New Books in Disability Studies

Danielle Bainbridge, "Currencies of Cruelty: Slavery, Freak Shows, and the Performance Archive" (NYU Press, 2026)

Fri, 03 Apr 2026 08:00:00 -0000

Currencies of Cruelty: Slavery, Freak Shows, and the Performance Archive (NYU Press, 2026) is a bold and incisive reconsideration of the relationship between enslavement, disability, and performance in 19th- and early 20th-century America; a time when transition from slavery to legal freedom became entangled with the spectacle of the freak show stage, where disabled and racialized performers became lucrative attractions.

At the heart of this powerful study are conjoined twins Millie Christine McKoy, born into slavery and later emancipated, and the so-called “original Siamese Twins,” Chang and Eng Bunker, who navigated the freak show circuit not only as performers but also as enslavers. Their stories reveal how archival practices surrounding enslavement and performance labor worked in tandem, creating a system where unfree and newly freed bodies were simultaneously valued and devalued—exploited for their spectacle yet rendered abject within traditional labor economies.

Blending historical analysis with innovative archival theory, Currencies of Cruelty challenges conventional narratives of labor, freedom, and human worth. A gripping exploration of race, commerce, and bodily spectacle, this book sheds crucial light on how histories of subjugation continue to shape our understanding of value and visibility today.

Author Danielle Bainbridge is an Assistant Professor of Theatre at Northwestern University, where she also holds courtesy appointments in Performance Studies and Black Studies. You can find her at the Northwestern University website, on Instagram, and on Bluesky.

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Katherine Harvey, "The Medieval Guide to Healthy Living" (Reaktion, 2026)

Wed, 01 Apr 2026 08:00:00 -0000

We often think of medieval medicine as strange, unhygienic and unscientific, but The Medieval Guide to Healthy Living (Reaktion, 2026) by Dr. Katherine Harvey reveals a far richer story. Long before modern wellness trends, people in the Middle Ages were actively thinking about how to live well. They followed detailed health regimens, balanced diet with exercise, considered the effects of emotions and sought to avoid illness through environmental awareness and routine care. This book sheds light on the practical and surprisingly relatable ways medieval individuals cared for body and mind. Drawing from historical sources that echo today’s wellness concerns, it offers a fresh, thoughtful view of a misunderstood era. In understanding their world, we might see our own in a new, more connected light.

This interview was conducted by Dr. Miranda Melcher whose book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars. You can find Miranda’s interviews on New Books with Miranda Melcher, wherever you get your podcasts.

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Doug Crandell, "Twenty-Two Cents an Hour: Disability Rights and the Fight to End Subminimum Wages" (Cornell UP, 2022)

Sat, 21 Mar 2026 08:00:00 -0000

In Twenty-Two Cents an Hour: Disability Rights and the Fight to End Subminimum Wages (Cornell UP, 2022), Doug Crandell uncovers the harsh reality of people with disabilities in the United States who are forced to work in unethical conditions for subminimum wages with little or no opportunity to advocate for themselves, while wealthy CEOs grow even wealthier as a direct result. As recently as 2016, the United States Congress enacted bipartisan legislation which continued to allow workers with disabilities to legally be paid far lower than the federal minimum wage. Drawing on ongoing federal Department of Justice lawsuits, the horrifying story of Henry's Turkey Farm in Iowa, and more, Crandell shows the history of the policies that have led to these unjust outcomes, examines who benefits from this legislation, and asks important questions about the rise of a disability industrial complex. Exposing this complex—which is rooted in profit, lobbying, and playing on the emotions of workers' parents and families, as well as the public—Crandell challenges readers to reexamine how we treat some of our most vulnerable fellow citizens. Twenty-Two Cents an Hour forces the reader to face the reality of this exploitation, and builds the framework needed for reform.

Doug Crandell is Public Service Faculty at the Institute on Human Development and Disability at the University of Georgia. For more than thirty years he has worked in disability advocacy, specifically the intersection of employment, economic justice, and much-needed systems change. Doug Crandell is the author of several book and novels, inlcuding most recently "They're Calling You Home."

My co-producer for this episode is Shea Tripp, a graduate student in the Department of Communication, Journalism and Public Relations at Oakland University.

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Susannah B. Mintz, "Hypochondria: In Sickness and in Story" (Reaktion, 2026)

Sun, 15 Mar 2026 08:00:00 -0000

Hypochondria: In Sickness and in Story (Reaktion, 2026) proposes a bold reimagining of a frequently dismissed condition. Dr. Susannah B. Mintz reframes health anxiety not as a pathology but as a site of creative potential – exploring hypochondria as a form of communication, a reorientation to time, a convergence of personal and communal identity, a declaration of bodymind needs and an embrace of ageing’s transformations. Far-ranging in its attention to historical periods, national literatures, philosophical thought and medical discourse, the book challenges the containment of suffering within narratives of professional authority. In doing so, it seeks to dispel shame and stigma, opening space for new forms of connection and understanding through a deeper attentiveness to the experience of illness.

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Podcast Intellectuals Podcast Panel #1 with Benjamen Walker and Fanny Gribenski

Thu, 12 Mar 2026 08:00:00 -0000

This is a special edition of the New York Institute for the Humanities’ Vault podcast. On October 10, 2025, NYU’s Journalism Institute hosted a day-long conference titled Podcast Intellectuals: Producing Original Scholarship with Audio. Over the course of three panels, scholars, podcasters, and journalists discuss how academics might employ the techniques of narrative audio as part of their research.

In the first panel, podcaster Benjamen Walker discusses his work with NYU media studies professor Mara Mills as they produce Tuning Time, a podcast about the politics of time stretching technology. Professor Mills is an interdisciplinary scholar in the fields of disability studies, Science and Technology Studies, and sound studies. She teaches in the Department of Media, Culture, and Communication and is Director of the NYU Center for Disability Studies. Her work on “disability and media” spans disability arts and technoscience, with a focus on the history, politics, and cultures of electronics and digital media. Benjamen Walker is a radio writer and producer. He is one of the co-founders of the podcast network Radiotopia from PRX, and for a decade hosted and produced his award winning program Benjamen Walker’s Theory of Everything.

The first panel concluded with a presentation by NYU musicologist Fanny Gribenski in which she discusses her current project, The Elephant in the Piano: Music, Ecology, Empire. The book, and podcast, is an investigation of the 19th century piano through a material history of its primary components: ivory, wood, felt, and metal. Professor Gribenski is a historical musicologist who specializes in the history of musical and sonic practices. Her first book, L'Église comme lieu de concert. Pratiques musicales et usages de l'espace (Paris, 1830–1905) analyzes the role of music in the production of sacred spaces. Tuning the World: The Rise of 440 Hertz in Music, Science, and Politics, 1859-1955 (University of Chicago, 2023) traces the rocky path towards international pitch standardization.

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A Light in the Tower: A New Reckoning with Mental Health in Higher Education

Thu, 26 Feb 2026 09:00:00 -0000

A Light in the Tower argues that excellent education and radical support for mental health struggles can coexist, and provides detailed advice for how to do so. Dr. Katie Rose Guest Pryal debunks claims that supporting student mental health harms educational rigor (coining the term “rigor angst” to discuss the fear that rigor is declining). She outlines actionable steps professors and administrators can take, including abandoning ableist and exclusionary campus culture; replacing “bad-hard” work that creates unnecessary logistical difficulties for students in favor of “good-hard” work that challenges them intellectually; providing an easy path to disability accommodations; and teaching accessibly for neurodivergent students.

Dr. Pryal examines the anxiety that plagues campuses as a result of exploited and overworked contingent faculty and students, the systemic and institutional burnout that affects higher education at every level, and the market-driven culture of toxic overwork. Addressing the stigma that haunts mental disability on campus, the ableism that hounds our teaching, and the cascade of mental health struggles that far too many faculty and students face, Dr. Pryal provides straightforward solutions to complex challenges.

Our guest is: Dr. Katie Rose Guest Pryal, who is an author, neurodiversity expert, and adjunct professor of law at the University of North Carolina at Chapel Hill. She is the author of A Light in the Tower, and other works including the award-winning Even If You’re Broken: Bodies, Boundaries, and Mental Health.

Our host is: Dr. Christina Gessler, who is an academic writing coach and editor. She is the producer and creator of the Academic Life podcast.

Playlist:

Welcome to Academic Life, the podcast for your academic journey—and beyond! Please join us again to learn from more experts inside and outside the academy, and around the world. Missed any of the 300+ Academic Life episodes? Find them here. And thank you for listening!

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J. Logan Smilges, "Crip Negativity" (U of Minnesota Press, 2023)

Fri, 09 Jan 2026 09:00:00 -0000

In the thirty years since the Americans with Disabilities Act was signed into law, the lives of disabled people have not improved nearly as much as activists and politicians had hoped. In Crip Negativity (U of Minnesota Press, 2023), J. Logan Smilges shows us what’s gone wrong and what we can do to fix it.

Leveling a strong critique of the category of disability and liberal disability politics, Smilges asks and imagines what horizons might exist for the liberation of those oppressed by ableism—beyond access and inclusion. Inspired by models of negativity in queer studies, Black studies, and crip theory, Smilges proposes that bad crip feelings might help all of us to care gently for one another, even as we demand more from the world than we currently believe to be possible.

J. Logan Smilges (they/them) is assistant professor of English language and literatures at the University of British Columbia and author of Queer Silence: On Disability and Rhetorical Absence (Minnesota, 2022).

Clayton Jarrard is a Research Project Coordinator at the University of Kansas Center for Research, contributing to initiatives at the nexus of research, policy implementation, and community efforts. His scholarly engagement spans the subject areas of Cultural Anthropology, Queer Studies, Disability Studies, Mad Studies, and Religious Studies. Clayton is also a host for the Un/Livable Cultures podcast.

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Arseli Dokumaci, "Activist Affordances: How Disabled People Improvise More Habitable Worlds" (Duke UP, 2023)

Sun, 04 Jan 2026 09:00:00 -0000

For people who are living with disability, including various forms of chronic diseases and chronic pain, daily tasks like lifting a glass of water or taking off clothes can be difficult if not impossible. In Activist Affordances: How Disabled People Improvise More Habitable Worlds (Duke UP, 2023), Arseli Dokumacı draws on ethnographic work with differently disabled people whose ingenuity, labor, and artfulness allow them to achieve these seemingly simple tasks. Dokumacı shows how they use improvisation to imagine and bring into being more habitable worlds through the smallest of actions and the most fleeting of movements---what she calls “activist affordances.” Even as an environment shrinks to a set of constraints rather than opportunities, the improvisatory space of performance opens up to allow disabled people to imagine that same environment otherwise. Dokumacı shows how disabled people’s activist affordances present the potential for a more liveable and accessible world for all of us.

Dr. Arseli Dokumaci, PhD is Assistant Professor of Communication Studies, Canada Research Chair in Critical Disability Studies and Media Technologies, and Director of the Access in the Making (AIM) Lab

A [full transcript of the interview](link) is available for accessibility purposes.

Clayton Jarrard is a Research Project Coordinator at the University of Kansas Center for Research, contributing to initiatives at the nexus of research, policy implementation, and community efforts

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Gracen Brilmyer and Lydia Tang eds., "Preserving Disability: Disability and the Archival Profession" (Library Juice Press, 2024)

Sat, 22 Nov 2025 09:00:00 -0000

A transcript of this interview is available [here]

Preserving Disability: Disability and the Archival Profession (Library Juice Press, 2024) weaves together first-person narratives and case studies contributed from disabled archivists and disabled archives users, bringing critical perspectives and approaches to the archival profession. Contributed chapters span topics such as accessibility of archives and first-person experiences researching disability collections for disabled archives users; disclosure and accommodations and self-advocacy of disabled archivists; and processing and stewarding disability-related collections. Collectively, these works address the nuances of both disability and archives-critically drawing attention to the histories, present experiences, and future possibilities of the archival profession.

Dr. Gracen Brilmyer is an Assistant Professor in the School of Information Studies at McGill University and the Director of the Disability Archives Lab. Their research lies at the intersection of feminist disability studies, archival studies, and the history of science, where they investigate the erasure of disabled people in archives primarily within the history of natural history museums and colonial histories. This historical-archival research is complemented by empirical research on how living disabled people use and experience archives today. Their work has been featured in publications such as The Journal of Feminist Scholarship, Archival Science, and First Monday. Their research is shaped by their experiences as a white, Disabled, non-binary person. For more: here

Dr. Lydia Tang is an Outreach and Engagement Coordinator for LYRASIS. Previously, she held archivist positions at Michigan State University, the Library of Congress, and numerous graduate positions at the University of Illinois, where she received her MLIS and Doctor of Musical Arts degree. Passionate about accessibility and disability representation in archives, she served on the Task Force to Revise the Best Practices on Accessible Archives for People with Disabilities and spearheaded founding the Society of American Archivists’ (SAA) Accessibility & Disability Section (ADS). She is the 2020 recipient of SAA’s Mark A. Greene Emerging Leader Awardand was recognized in three SAA Council resolutions as a co-founder of the Archival Workers Emergency Fund, for spearheading the Accessibility & Disability Section’s“Archivists at Home” document, and for the “Guidelines for Accessible Archives for People with Disabilities.” In addition to her professional service with SAA, she has contributed to accessibility initiatives within DLF Digital Accessibility Working Group and the ArchivesSpace open source software and community by leading the Staff Interface Enhancement Working Group, Development Prioritization subteam, founding the Usability subteam, and chairing the Users Advisory Council.

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Eli Clare, "Unfurl: Survivals, Sorrows, and Dreaming" (Duke UP, 2025)

Fri, 21 Nov 2025 09:00:00 -0000

A transcript of this interview is available [here]

A queer disabled love song to trees and beavers, tremors and dreams, Unfurl: Survivals, Sorrows, and Dreaming (Duke UP, 2025) explores the pulsing core and porous edges of survival, sorrow, and dreaming. Blending poetry and creative nonfiction, emotion and activist thinking, Eli Clare invites us to unfurl ourselves into the lovely multitude of genders beyond the binary of woman and man, the fierceness of street protest, and the long slow time of granite. He sings to aquifers. Wrestles with the aftermath of child abuse and his family’s legacy as white settlers occupying Dakota homelands. He leans into history. Calls the names of the living and the dead. Connects his own tremoring body to a world full of tremors—earthquakes, jackhammers, quaking aspens. Unfurl reveals deep queer kinships between human and more-than-human, sentient and nonsentient. At every juncture, these poems and essays embrace porousness and the power of dreaming. Ultimately, Unfurl is an invitation to rebellion and joy.

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Vanessa Warne, "By Touch Alone: Blindness and Reading in Nineteenth-Century Culture" (U Michigan Press, 2025)

Sat, 27 Sep 2025 08:00:00 -0000

By Touch Alone: Blindness and Reading in Nineteenth-Century Culture (U Michigan Press, 2025) by Dr. Vanessa Warne demonstrates how reading by touch not only changed the lives of nineteenth-century blind people, but also challenged longstanding perceptions about blindness and reading. Over the course of the nineteenth century, thousands of blind people learned how to read by touch. Using fiction, essays, letters, and speeches authored by blind readers, By Touch Alone traces the ways in which literacy changed blind people's experiences of education, leisure, spirituality, and social engagement. Analyzing records of activism and innovation as well as frustration, this study documents the development of an inkless book culture shaped by blind readers’ preferences and needs.

While By Touch Alone features the writing and ideas of an understudied community of nineteenth-century blind authors, innovators, and activists, it also engages the work of sighted authors such as George Eliot and Rudyard Kipling to explore the culture-wide effects of reading by touch. The emergence of a new category of readers who did not rely on sight to read prompted sighted people to reimagine blindness and adopt more progressive attitudes toward blind people. In our own era, one characterized by the increasing digitization of our reading lives, Vanessa Warne’s exploration positions scholars and blind readers to navigate present-day developments and shape the future of their reading lives. A carefully contextualized study of how reading by touch shaped Victorian culture, By Touch Alone adds new chapters to the history of disability and reading.

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Leon J. Hilton, "Counter-Cartographies: Neurodivergence and the Errancies of Performance" (U Minnesota Press, 2025)

Tue, 02 Sep 2025 08:00:00 -0000

What if we embraced neurodivergent ways of being not as deviations to be corrected but as vital ways of inhabiting the world? What new realities might emerge? Bringing a much-needed humanistic perspective to the study of autism and other forms of neurodivergence, Counter-Cartographies: Neurodivergence and the Errancies of Performance (U Minnesota Press, 2025) offers a bold reimagining of neurological difference, moving beyond rigid diagnostic frameworks to uncover more expansive, generative modes of existence.

Engaging the work of Fernand Deligny to trace how modern taxonomies of neurodivergence have hardened over time, Leon J. Hilton questions how these categories might instead serve as tools for remapping the world with neurodivergence at its center. At the heart of Counter-Cartographies is an exploration of performance and performativity that reveals how the norm of neurotypical reality is continually reinforced through acts of doing, redoing, and undoing.

Charting the historical shift away from “mind” and toward “brain” and moving fluidly across disciplines—from digital art and documentary cinema to cybernetics and radical mental health movements—Hilton illuminates the deep interconnections between performance, perception, and the historical construction of the “neurotypical.” Through close readings of works by William Pope.L, Mel Baggs, Wu Tsang, and others, Hilton also examines how neurodivergence has been represented, embodied, and materialized in contemporary art and media. Restless, engrossing, and persistently attuned to moments of rupture when the neurotypical order falters, Counter-cartographies charts a path toward a more capacious, imaginative world.

Leon J. Hilton is assistant professor of theatre arts and performance studies and co-convener of the Disability Studies Working Group at Brown University. He is a member of the editorial collective of the journal Social Text and on the advisory board of Spectrum Theatre Ensemble, a neurodiverse theatre company based in Providence, Rhode Island.

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Stacia Kalinoski, "Racing Uphill: Confronting a Life with Epilepsy" (U Minnesota Press, 2025)

Wed, 20 Aug 2025 08:00:00 -0000

The book, Racing Uphill: Confronting a Life with Epilepsy (U of Minnesota Press, 2025), is a memoir and an educational resource, which tells the story of an Emmy Award-winning TV news Journalist, Stacia Kalinoski. The author's aim is beyond giving an account of her experience of epilepsy, her goal is to sensitize readers and inspire epileptic patients and other people battling with ailments that carry social stigma, emphasizing the importance of taking control of one's health. In the book, Stacia Kalinoski recounts her experience of visual distortions and feelings of déjà vu and jamais vujamais vu, which are auras that often precede more severe seizures. She discusses the physical injuries and memory loss resulting from her condition, particularly from temporal lobe seizures.

Stacia's narrative underscores the complexities of living with epilepsy and the potential for personal growth and empowerment through adversity. She highlights the effects of frequent episodes of seizure on maintenance of social relationships and the ability to reminisce about the past. Relating her experience, Stacia dwells on the importance of confronting the reality of living with epilepsy, she emphasizes the significance of understanding seizures to combat the stigma and fear surrounding the condition, and how surgery can improve memory loss and allow People Living with Epilepsy reconnect with their past.

Mariam Olugbodi is a university teacher and a writer, she is the author of the monograph titled Stylistic Features in the 2011 and 2012 Final Matches Commentaries in the UEFA Champions League, published by Grin Verlag. Mariam’s greatest dream is seeing a world where knowledge is accessible to all. She does this through her volunteering roles on open knowledge platforms as a host and an editor. As part of her effort to maintain inclusion and diversity in knowledge transmission, she volunteers as a teacher in crises contexts. Learn more and connect with Mariam through her social links @ (22) Olugbodi Mariam | LinkedIn, Mariam Olugbodi (0000-0001-5027-6644) - ORCID and User:Margob28 - Meta

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The Social Impact of Automating Translation

Sun, 03 Aug 2025 08:00:00 -0000

In this episode of the Language on the Move Podcast, Tazin Abdullah speaks with Dr. Esther Monzó-Nebot, Associate Professor in Translation and Interpreting Studies at Universitat Jaume I in Catalunya. They talk about Dr. Monzó-Nebot's new book The Social Impact of Automating Translation: An Ethics of Care Perspective on Machine Translation.

The conversation delves into ideological issues involved in the widespread use of machine translation and the real-life impact for those who may rely on machine translations in various situations. Esther’s research and the wide variety of contributions to the book highlight the need to open a discussion about instilling an ‘ethics of care’ perspective into the use of technology to make AI-generated translations more inclusive and relevant for the communities using them.

For additional resources, show notes, and transcripts, go here.

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Ela Przybylo, "Ungendering Menstruation" (U Minnesota Press, 2025)

Mon, 21 Jul 2025 08:00:00 -0000

Ungendering Menstruation by Ela Przybyło discusses why and how menstrual pain needs to be incorporated into discussions of gender, embodiment, and disability. Honing a "cranky" approach to being a menstruating body expected to accept and embrace trauma, Ungendering Menstruation examines menstrual suppression, toxicity, and the cooptation of menstrual positivity rhetoric. Drawing on their own experiences as a toxic shock survivor and a menstrual pain and period dysphoria sufferer, Ela Przybyło questions why, on what terms, and for whom menstruation has been fixed around experiences of pain. Instead, they present a vision for menstrual justice that refuses the womaning of bleeding and the further erasure, dismissal, and denial of menstrual pain as real pain. If menstruating is framed as somatechnically elective, Przybyło contends, it provides avenues for both celebrating and appreciating cultures of bleeding as well as for remaining critical of the ways in which bleeding has been used as a transphobic and sexist tool to fix gender in place.

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Fadi Zaghmout, "The Man of Middling Height" (Syracuse UP, 2025)

Tue, 08 Jul 2025 08:00:00 -0000

What if our society’s deepest prejudices weren’t about race, gender, or sexuality—but height? In his groundbreaking allegorical novel, acclaimed Jordanian author and activist Fadi Zaghmout imagines just such a world, crafting a powerful meditation on discrimination and desire that speaks directly to our contemporary debates about identity and inclusion.

The Man of Middling Height (Syracuse University Press, 2025) follows a short dressmaker whose life is upended when she meets Tallan, a man whose middle height places him outside the rigid tall/short binary that governs their society. As their forbidden romance blossoms, they must navigate a world where height determines everything from social status to romantic possibilities. Through their story and those of surrounding characters—including a short person in a polyamorous relationship with two tall partners, and a tall activist who scandalously loves another tall person—Zaghmout deftly reframes contemporary discussions about gender identity and sexuality through the lens of height discrimination.

Fadi Zaghmout is a Jordanian author and sexual freedoms and body rights advocate. He has published five novels, including The Bride of Amman, Heaven on Earth, Laila, and Hope on Earth.

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Improving Quality of Care for Patients with Limited English

Wed, 25 Jun 2025 08:00:00 -0000

In this episode of the Language on the Move Podcast, Brynn Quick speaks with Dr. Leah Karliner. Dr. Karliner is Professor in Residence in the Division of General Internal Medicine, Department of Medicine at the University of California, San Francisco in the United States. She is Director of the Center for Aging in Diverse Communities and Director of the Multiethnic Health Equity Research Center. She is both a practicing general internist and a health services researcher, with expertise in practice-based and communication research. An important aspect of her scholarly work centres on improving quality of care for patients with limited English proficiency, and the goal of her research agenda is aimed at achieving health equity through improved communication and clinical outcomes.

In this episode, Brynn and Leah discuss a 2024 paper that Leah co-authored entitled “Language Access Systems Improvement initiative: impact on professional interpreter utilisation, a natural experiment”. The paper details a study that investigated two ways of improving the quality of clinical care for limited English proficiency (LEP) patients in English-dominant healthcare contexts, by:

Certifying bilingual clinicians to use their non-English language skills directly with patients; and

Simultaneously increasing easy access to professional interpreters by instituting on-demand remote video interpretation.

Brynn and Leah talk about the results of this study and what they mean for improved communication with LEP patients in healthcare.

For additional resources, show notes, and transcripts, go here.

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Marc Sapir, "I'll Fly Away: Stories About Amazing Disabled Elders" (2025)

Sat, 21 Jun 2025 08:00:00 -0000

We all hope to grow old with dignity and some joyfulness. The intimate narratives of 40 extraordinary elders shared in I'll Fly Away: Stories About Amazing Disabled Elders explore both the challenges of aging and the joys and vibrancy that often persist in the twilight years. Poignant observations of the patients and families by a team of health professionals intersecting daily at the Center for Elders' Independence in Oakland, California, reveal the complexities of aging, identity, amid the assertive persistence of the human spirit.

From a couple's summer drive across the Arizona desert to a family's struggle with mental illness to patients' romantic escapades, each tale offers a unique glimpse into the resilience of individuals facing profound transitions and prompts questions about our collective responsibility to our elders.

Though this book is valuable for medical and public health professionals, it especially offers families kinship, support, and inspiration. For patients and readers in general, I'll Fly Away champions the idea that every one of us is a unique person with needs, wants, and a voice that is discoverable and deserves to be heard. It embodies the notion that every life is a story, and every voice matters.

Marc Sapir, a retired primary care, geriatric and public health physician, is an essayist and political activist. He was first Medical Director of the Center for Elders' Independence for disabled elders for 9 years. He is author of five plays, and also writes fiction, poetry, and music. He lives in Berkeley, CA.

Caleb Zakarin is editor of the New Books Network.

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Luanjiao Hu, "Inclusion, Exclusion, Agency, and Advocacy: Experiences of Women With Physical Disabilities in China, With Worldwide Implications" (IAP, 2024)

Sun, 25 May 2025 08:00:00 -0000

Inclusion, Exclusion, Agency, and Advocacy: Experiences of Women With Physical Disabilities in China, With Worldwide Implications (IAP, 2024) explores the lived experiences of six women, including the author herself, with physical disabilities in China. The book provides in-depth descriptions of each woman's experiences in different aspects and analyze the commonalities and differences in their experiences through their life courses. The book explores answers to some of these questions: How do physically disabled women make sense of their experiences? What are some of the empowering and/or disempowering moments/events in their lives, if any? What are disabled women's experiences in terms of education, employment, relationships, family life, and social activism? How does some of the disabled women in the book become motivated and mobilized to work on disability issues?

This book serves to amplify Chinese disabled women's stories and make their presence more visible. Too often, dominant narratives and depictions of disability are written by people without disabilities, while disabled people's voices are either invisible or secondary. Sadly, this phenomenon is not new and disability advocates have been faced with these types of narratives for quite some years. To have one's own voice and speak up is to claim subjectivity, agency, and power. Different stories told by women with disabilities themselves can enrich our understanding of disability and gender. These stories have the potential to challenge dominant and oppressive narratives prevalent in our ableist societies.

The stories included in this book could provide space and potential to connect with disabled people (people with either visible or invisible disabilities) elsewhere. Women's empowering experiences and encounters shown in this book could inspire relevant stakeholders to think of ways to better understand and support disabled women in their environments. This book will have wide implications for readers not only in China, but also in other parts of the world. Many disability stories of exclusion and/or empowerment of the world are still hidden and not reflected upon. The author invites readers to reflect on their own experiences and how societies have impacted the life courses of individuals with or without disabilities in their respective social, political, economic, and cultural environments. Cultural and social change around disability can start with anyone who are touched by genuine stories of vulnerability and reflexivity, as the ones to be shared in this book.

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Erin Pritchard, "Midgetism: The Exploitation and Discrimination of People with Dwarfism" (Routledge, 2023)

Fri, 23 May 2025 08:00:00 -0000

There exist problematic attitudes and beliefs about dwarfism that have rarely been challenged, but continue to construct people with dwarfism as an inferior group within society. Midgetism: The Exploitation and Discrimination of People with Dwarfism (Routledge, 2023) introduces the critical term 'midgetism', which the author has coined, to demonstrate that the socio-cultural discrimination people with dwarfism experience is influenced by both heightism and disablism.

As a result, it unpacks and challenges the problematic social assumptions that reinforce midgetism within society, including the acceptability of 'midget entertainment' and 'non-normate space', to demonstrate how particular spaces can either aid in reinforcing or challenge midgetism.

Drawing on the tripartite model of disability, this book demonstrates how midget entertainment is framed as a non-normative positivism, which makes it an acceptable form of employment. Using autocritical discourse analysis, the book exposes, examines and responds to excuses that are used to reinforce midgetism, thus critiquing the numerous beliefs influenced by cultural representations of dwarfism, such as people with dwarfism being acceptable figures of entertainment.

It will be of interest to all scholars and students of disability studies, social history, sociology and cultural geography.

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David Serlin, "Window Shopping with Helen Keller: Architecture and Disability in Modern Culture" (U Chicago Press, 2025)

Mon, 12 May 2025 08:00:00 -0000

Window Shopping with Helen Keller: Architecture and Disability in Modern Culture (U Chicago Press, 2025) offers a history of how encounters between architects and people with disabilities transformed modern culture.

Window Shopping with Helen Keller recovers a series of influential moments when architects and designers engaged the embodied experiences of people with disabilities. David Serlin reveals how people with sensory and physical impairments navigated urban spaces and helped to shape modern culture. Through four case studies--the lives of Joseph Merrick (aka "The Elephant Man") and Helen Keller, the projects of the Works Progress Administration, and the design of the Illinois Regional Library for the Blind and Physically Handicapped--Serlin offers a new history of modernity's entanglements with disability.

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Terry Baxter and Libby Coyner-Tsosie, "Stories on Skin: A Librarian's Guide to Tattoos as Personal Archives" (Bloomsbury, 2025)

Mon, 28 Apr 2025 08:00:00 -0000

Tattoos are not merely decorative; they contain deep meaning for individuals and communities. They document their wearers' personal histories and position in families or society, and they engage with a communal understanding of symbols.
Stories on Skin: A Librarian's Guide to Tattoos as Personal Archives (Bloomsbury, 2025) by Terry Baxter & Libby Coyner-Tsosie makes the case that archivists who want to preserve as full a human story as possible must recognize the rich documentation provided by tattoos. It also argues, in a broader sense, that traditional archives are not representative of the ways human beings transmit information through time and that they must be augmented by other types of storytelling to provide a more complete record of our species.
Baxter and Coyner-Tsosie touch on timely topics such as historical narratives, storytelling, cultural traditions, the body as a text, social control, and memorialization by considering tattoos as a personal and community archive. Discussing tattoos as a storytelling tool, the authors also challenge how history is kept and who gets included. Stories on Skin is committed to the rights of communities to tell their stories in their own way and to the power that right brings.

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The Case for ASL Instruction for Hearing Heritage Signers

Sun, 27 Apr 2025 08:00:00 -0000

In this episode of the Language on the Move Podcast, Emily Pacheco speaks with Associate Professor Su Kyong Isakson (Community College of Baltimore County, USA) about her 2018 paper, The Case for Heritage ASL Instruction for Hearing Heritage Signers. The conversation focuses on heritage signers, differentiated instruction, and sign language interpreter education.

For additional resources, show notes, and transcripts, go here.

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Jina B. Kim, "Care at the End of the World: Dreaming of Infrastructure in Crip-Of-Color Writing" (Duke UP, 2025)

Sat, 12 Apr 2025 08:00:00 -0000

In Care at the End of the World: Dreaming of Infrastructure in Crip-Of-Color Writing (Duke UP, 2025), Jina B. Kim develops what she calls crip-of-color critique, bringing a disability lens to bear on feminist- and queer-of-color literature in the aftermath of 1996 US welfare reform and the subsequent evisceration of social safety nets. She examines literature by contemporary feminist, queer, and disabled writers of color such as Jesmyn Ward, Octavia Butler, Karen Tei Yamashita, Samuel Delany, and Aurora Levins Morales, who each bring disability and dependency to the forefront of their literary freedom dreaming. Kim shows that in their writing, liberation does not take the shape of the unfettered individual or hinge on achieving independence. Instead, liberation emerges by recuperating dependency, cultivating radical interdependency, and recognizing the numerous support systems upon which survival depends. At the same time, Kim demonstrates how theories and narratives of disability can intervene into state-authored myths of resource parasitism, such as the welfare queen. In so doing, she highlights the alternate structures of care these writers envision and their dreams of life organized around reciprocity and mutual support.

Duke University Press Scholars of Color First Book Award

Jina B. Kim is Assistant Professor of English and the Study of Women, Gender, and Sexuality at Smith College. Kim is a scholar, writer, and educator of feminist disability studies, queer-of-color critique, and contemporary multi-ethnic U.S. literature.

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Mara Mills et al., "How to Be Disabled in a Pandemic" (NYU Press, 2025)

Fri, 28 Mar 2025 08:00:00 -0000

How to Be Disabled in a Pandemic is the first book to document the experiences of those hardest hit by the COVID-19 pandemic in New York City—disabled people. Diverse disability communities across the five boroughs have been disproportionately impacted by city and national policies, work and housing conditions, stigma, racism, and violence—as much as by the virus itself. Disabled and chronically-ill activists have protested plans for medical rationing and refuted the eugenic logic of mainstream politicians and journalists who “reassure” audiences that only older people and those with disabilities continue to die from COVID-19. At the same time, as exemplified by the viral hashtag #DisabledPeopleToldYou, disability expertise has become widely recognized in practices such as accessible remote work and education, quarantine, and distributed networks of support and mutual aid.

How to Be Disabled in a Pandemic (NYU Press, 2025) charts the legacies of this “mass disabling event” for uncertain viral futures, exploring the dialectic between disproportionate risk and the creativity of a disability justice response. How to Be Disabled in a Pandemic includes contributions by wide-ranging disability scholars, writers, and activists whose research and lived experiences chronicle the pandemic’s impacts in prisons, migrant detention centers, Chinatown senior centers, hospitals in Queens and the Bronx, working from bed in Brooklyn, subways, schools, housing shelters, social media, and other locations of public and private life. By focusing on New York City over the course of three years, the book reveals key themes of the pandemic, including hierarchies of disability vulnerability, the deployment of disability as a tool of population management, and innovative crip pandemic cultural production. How to Be Disabled in a Pandemic honors those lost, as well as those who survived, by calling for just policies and caring infrastructures, not only in times of crisis but for the long haul.

A full transcript of this interview is available at the link here

Mara Mills is Associate Professor in the Department of Media, Culture, and Communication at New York University. Mills is cofounder of the NYU Center for Disability Studies and coeditor of Crip Authorship: Disability as Method.

Harris Kornstein is Assistant Professor of Public and Applied Humanities at the University of Arizona. They have published research and essays in Surveillance & Society, Curriculum Inquiry, Wired, and others.

Faye Ginsburg is Kriser Professor of Anthropology at New York University. Ginsburg is cofounder of the NYU Center for Disability Studies and author of Contested Lives: The Abortion Debate in an American Community and coauthor of Disability Worlds.

Rayna Rapp is Professor Emerita in the Department of Anthropology at New York University, and the author of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America and coauthor of Disability Worlds.

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Alisha Ali et al., "Mad Studies Reader: Interdisciplinary Innovations in Mental Health" (Routledge, 2024)

Wed, 26 Mar 2025 08:00:00 -0000

The last few years have brought increased writings from activists, artists, scholars, and concerned clinicians that cast a critical and constructive eye on psychiatry, mental health care, and the cultural relations of mental difference. With particular focus on accounts of lived experience and readings that cover issues of epistemic and social injustice in mental health discourse, the Mad Studies Reader: Interdisciplinary Innovations in Mental Health (Routledge, 2024) brings together voices that advance anti-sanist approaches to scholarship, practice, art, and activism in this realm. Beyond offering a theoretical and historical overview of mad studies, this Reader draws on the perspectives, voices, and experiences of artists, mad pride activists, humanities and social science scholars, and critical clinicians to explore the complexity of mental life and mental difference.

Voices from these groups confront and challenge standard approaches to mental difference. They advance new structures of meaning and practice that are inclusive of those who have been systematically subjugated and promote anti-sanist approaches to counter inequalities, prejudices, and discrimination. Confronting modes of psychological oppression and the power of a few to interpret and define difference for so many, the Mad Studies Reader asks the critical question of how these approaches may be reconsidered, resisted, and reclaimed. This collection will be of interest to mental health clinicians; students and scholars of the arts, humanities and social sciences; and anyone who has been affected by mental difference, directly or indirectly, who is curious to explore new perspectives.

Bradley Lewis is a psychiatrist and psychotherapist with a background in the arts and humanities. He is Associate Professor at New York University’s Gallatin School of Individualized Study and he is on the editorial board of the Journal of Medical Humanities. His books include Moving Beyond Prozac, DSM, and the New Psychiatry: The Birth of Postpsychiatry; Narrative Psychiatry: How Stories Can Shape Clinical Encounters; and Experiencing Epiphanies in Literature, Cinema, and Everyday Life (forthcoming).

Alisha Ali is Associate Professor in the Department of Applied Psychology at New York University. Her research focuses on the mental health effects of oppression, including violence, racism, discrimination, and trauma. She is the co-editor of the book Silencing the Self Across Cultures (Oxford University Press) as well as the co-editor of The Crisis of Connection (NYU Press).

Jazmine Russell is the co-founder of the Institute for the Development of Human Arts (IDHA), a transformative mental health training institute, and host of Depth Work: A Holistic Mental Health Podcast. She is an interdisciplinary scholar of mad studies, critical psychology, and neuroscience, with experience working both within and outside the mental health system.

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The Audiobook's Century-Long Overnight Success

Mon, 24 Mar 2025 08:00:00 -0000

Today we present the first episode of a miniseries on audiobooks by getting into the history and theory of the medium. Audiobooks are having a moment—and it only took them over a century to get here. Dr. Matthew Rubery, a Harvard PhD and Professor of Modern Literature at Queen Mary University of London, pioneered the study of the audiobook, its history, and its affordances.

Among his other works, Dr. Rubery is the author of The Untold Story of the Talking Book (2016, Harvard University Press). He’s also the editor of Audiobooks, Literature, and Sound Studies (2011, Routledge). Matt’s latest book is titled Reader’s Block: A History of Reading Differences (2022, Stanford University Press).

In this fascinating conversation, we discuss the long history of recorded literature; the weird shame around audiobook reading and its cultural roots; the interplay between disability, neurodivergence, and alternate forms of reading; and what an audiobook criticism might look like.

And for our patrons, we’ll have our What’s Good segment at the end of the show, where Matt will tell us something good to read, something good to listen to. Something good to do. You can become a patron of the show at patreon.com/phantompower.

Today’s show was edited by Mack Hagood. Transcription by Katelyn Phan. Music by Graeme Gibson

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Shahd Alshammari, "Confetti and Ashes" (2025)

Sun, 16 Mar 2025 08:00:00 -0000

Shahd Alshammari’s Confetti and Ashes: Reflections on Wellness (Literary Mentor Words for Wellness, 2025) is a speculative memoir that questions what it means to live a good life. Blending personal experiences with the voices of ghosts and a seductive Qareen, this is a meditative exploration of consciousness and the liminal spaces we exist in.

As a passionate Squash player, the narrator delves into the transformative power of sports. This lyrical narrative is genre-defying, refusing to adhere to conventional ways of narrating stories we carry within our bodies. Multi-layered and in many voices, this is a narrative of memory, disability, and movement.

In this episode, Ibrahim Fawzy interviews Shahd Alshammari about her creative process, her personal journey with multiple sclerosis, as well as how her writings explore illness, wellness, and the search for meaning.

Ibrahim Fawzy is a literary translator and writer based in Boston. His interests include translation studies, Arabic literature, ecocriticism, disability studies, and migration literature.

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Zhiying Ma, "Between Families and Institutions: Mental Health and Biopolitical Paternalism in Contemporary China" (Duke UP, 2025)

Fri, 14 Mar 2025 08:00:00 -0000

In contemporary China, people diagnosed with serious mental illnesses have long been placed under the guardianship of close relatives who decide on their hospitalization and treatment. Despite attempts at reforms to ensure patient rights, the 2013 Mental Health Law reinforced the family's rights and responsibilities.

In Between Families and Institutions, Zhiying Ma examines how ideological, institutional, and technological processes shape families' complicated involvement in psychiatric care. Drawing on extensive ethnographic fieldwork in psychiatric hospitals, community mental health teams, social work centers, and family support groups as well as interviews with policymakers and activists, Ma maps the workings of what she calls "biopolitical paternalism"--a mode of governance that sees vulnerable individuals as sources of risk, frames risk management as the state's paternalistic intervention, and shifts responsibilities for care and management onto families. Ma outlines the ethical tensions, intimate vulnerabilities in households, and health disparities across the population that biopolitical paternalism produces. By exploring these implications, Ma demonstrates the myriad ways biopower enables, inhibits, and transforms medical care in China.

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Alexandra F. Morris, "Disability in Ptolemaic Egypt and the Hellenistic World: Plato’s Stepchildren" (Routledge, 2024)

Sun, 09 Mar 2025 08:00:00 -0000

Through a thoughtful investigation, Disability in Ptolemaic Egypt and the Hellenistic World: Plato’s Stepchildren (Routledge, 2024) reveals often-overlooked narratives of disability within Ptolemaic Egypt and the larger Hellenistic world (332 BCE to 30 BCE). Chapters explore evidence of physical and intellectual disability, ranging from named individuals; representations of people and mythological figures with dwarfism, blindness and vision impairments; cerebral palsy; mobility impairments; spinal disability; and medicine, healing, and prosthetics. Morris examines the historiographical ways in which disability has been approached, and how ancient disability histories are (mis)represented in various contemporary spaces. It uses terminology informed by the disability community and offers guidance for disability inclusivity in curatorial and pedagogical museum and university contexts, as well as prioritizing disability as an essential area of research in ancient world studies and assisting readers with the identification of ancient disability artefacts.

The first-book length treatment of the subject, Disability in Ptolemaic Egypt and the Hellenistic World provides a much-needed resource for students and scholars of ancient Egypt, Egyptology, Classics, Classical Studies, and disability in the ancient world. It is also suitable for researchers in Disability Studies, practitioners in broader Ancient World Studies, and museum and heritage professionals. It is accessible to disabled people curious about their own history, as well as nondisabled people interested in disability history and those interested in a more accurate view of ancient Egyptian history.

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Michael Rembis, "Writing Mad Lives in the Age of the Asylum" (Oxford UP, 2025)

Sun, 09 Feb 2025 09:00:00 -0000

The asylum--at once a place of refuge, incarceration, and abuse--touched the lives of many Americans living between 1830 and 1950. What began as a few scattered institutions in the mid-eighteenth century grew to 579 public and private asylums by the 1940s. About one out of every 280 Americans was an inmate in an asylum at an annual cost to taxpayers of approximately $200 million.

Using the writing of former asylum inmates, as well as other sources, Writing Mad Lives in the Age of the Asylum (Oxford UP, 2025) reveals a history of madness and the asylum that has remained hidden by a focus on doctors, diagnoses, and other interventions into mad people's lives. Although those details are present in this story, its focus is the hundreds of inmates who spoke out or published pamphlets, memorials, memoirs, and articles about their experiences. They recalled physical beatings and prolonged restraint and isolation. They described what it felt like to be gawked at like animals by visitors and the hardships they faced re-entering the community. Many inmates argued that asylums were more akin to prisons than medical facilities and testified before state legislatures and the US Congress, lobbying for reforms to what became popularly known as "lunacy laws."

Michael Rembis demonstrates how their stories influenced popular, legal, and medical conceptualizations of madness and the asylum at a time when most Americans seemed to be groping toward a more modern understanding of the many different forms of "insanity." The result is a clearer sense of the role of mad people and their allies in shaping one of the largest state expenditures in the nineteenth and early twentieth centuries--and, at the same time, a recovery of the social and political agency of these vibrant and dynamic "mad writers."

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Mary Zaborskis, "Queer Childhoods: Institutional Futures of Indigeneity, Race, and Disability" (NYU Press, 2024)

Wed, 05 Feb 2025 09:00:00 -0000

Queer Childhoods: Institutional Futures of Indigeneity, Race, and Disability (NYU Press, 2024) explores how the institutional management of children's sexualities in boarding schools affected children's future social, political, and economic opportunities

Tracing the US's investment in disciplining minoritarian sexualities since the late nineteenth century, Mary Zaborskis focuses on a ubiquitous but understudied figure: the queer child. Queer Childhoods examines the lived and literary experiences of children who attended reform schools, schools for the blind, African American industrial schools, and Native American boarding schools. In mapping the institutional terrain of queer childhoods in educational settings of the late nineteenth- and twentieth-century, the book offers an original archive of children's sexual and embodied experiences.

Zaborskis argues that these boarding schools--designed to segregate racialized, criminalized, and disabled children from mainstream culture--produced new forms of childhood. These childhoods have secured American futures in which institutionalized children (and the adults they become) have not been considered full-fledged citizens or participants. By locating this queerness in state archives and institutions, Queer Childhoods exposes a queer social history entangled with genocide, eugenics, and racialized violence.

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Whitney Dirks, "Monstrosity, Bodies, and Knowledge in Early Modern England" (Amsterdam UP, 2024)

Mon, 03 Feb 2025 09:00:00 -0000

Whitney Dirks joins Jana Byars to talk about her new book, Monstrosity, Bodies, and Knowledge in Early Modern England: Curiosity to See and Behold (Amsterdam University Press, 2024). In 1680, the poor cottager Mary Herring gave birth to conjoined twins. At two weeks of age, they were kidnapped to be shown for money, and their deaths shortly thereafter gave rise to a four-year legal battle over ownership and income. The Herring twins' microhistory weaves throughout this book, as the chapter structure alternates between the family's ordeal and the broader cultural context of how so-called 'monstrous births' (a contemporary term for deformed humans and animals) were discussed in cheap print, exhibited in London's pubs and coffeehouses, examined by the Royal Society, portrayed in visual culture, and litigated in London's legal courts. This book ties together social and medical history, Disability Studies, and Monster Studies to argue that people discussed unusual bodies in early modern England because they provided newsworthy entertainment, revealed the will of God, and demonstrated the internal workings of Nature.

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Disability and the History of Science (Osiris, Vol 36)

Sat, 18 Jan 2025 09:00:00 -0000

This volume of Osiris places disability history and the history of science in conversation to foreground disability epistemologies, disabled scientists, and disability sciencing (engagement with scientific tools and processes). Looking beyond paradigms of medicalization and industrialization, the volume authors also examine knowledge production about disability from the ancient world to the present in fields ranging from mathematics to the social sciences, resulting in groundbreaking histories of taken-for-granted terms such as impairment, infirmity, epidemics, and shōgai.

Some contributors trace the disabling impacts of scientific theories and practices in the contexts of war, factory labor, insurance, and colonialism; others excavate racial and settler ableism in the history of scientific facts, protocols, and collections; still others query the boundaries between scientific, lay, and disability expertise. Contending that disability alters method, authors bring new sources and interpretation techniques to the history of science, overturn familiar narratives, apply disability analyses to established terms and archives, and discuss accessibility issues for disabled historians. The resulting volume announces a disability history of science.

Jaipreet Virdi is a historian of medicine, technology and disability. Her research and teaching interests include the history of medicine, the history of science, disability history, disability technologies and material/visual culture studies. She received her Ph.D. from the Institute for the History and Philosophy of Science and Technology at the University of Toronto (2014).

Mara Mills is Associate Professor and Ph.D. Director in the Department of Media, Culture, and Communication at New York University. She is cofounder and Director of the NYU Center for Disability Studies; a founding editor of the award-winning journal Catalyst: Feminism, Theory, Technoscience; and a founding member of the steering committees for the NYU cross-school minors in Science and Society and Disability Studies.

Sarah Rose is an associate professor of history at the University of Texas at Arlington, where she founded and directs the Minor in Disability Studies. There are more than 120 Disability Studies graduates from UTA now. She also co-founded and serves as faculty advisor for UTA Libraries’ Texas Disability History Collection, for which she and Trevor Engel co-curated the Building a Barrier-Free Campus traveling and digitized exhibit. Her book, No Right to Be Idle: The Invention of Disability, 1840s-1930s, was published by University of North Carolina Press in 2017 and was awarded the 2018 Philip Taft Prize in Labor and Working Class History and the 2018 Disability History Association Outstanding Book Award, among other awards. She has also published with Dr. Joshua Salzmann in LABOR on how baseball players and teams have managed health and fitness and in the Journal of Policy History on disabled veterans’ access to the GI bill and higher education after World War II.

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Voices Part 3: Dork-O-Phonics

Mon, 16 Dec 2024 09:00:00 -0000

Jonathan Sterne is one of the most influential scholars working on sound and listening. His 2003 book, The Audible Past: Cultural Origins of Sound Reproduction, had a formative influence on the then-nascent field of sound studies. His 2012 book, MP3: The Meaning of a Format, was both a fascinating cultural history and a deep meditation on the purpose of compression technology in capitalism. Today, Sterne talks to Phantom Power about his new book, Diminished Faculties: A Political Phenomenology of Impairment (Duke UP 2022). Specifically, he tells the story of the “Dork-o-phone,” a vocal amplifier he wears to give talks or communicate in loud spaces. Jonathan explains why he wears the Dork-o-phone, what it’s taught him about voice, technology, and disability, and how his experience informs Diminished Faculties’ “phenomenology of impairment.”

This is the third and final part of our series, Voices. Although you don’t need to listen to the other episodes first to enjoy this one, here are the links to part one and part two.

All of this episode’s sound art and music are performed by Jonathan Sterne and/or groups he appears in:

Cancerscapes: Recordings made during Sterne’s thyroid cancer treatment
Volte: An instrumental post rock band
The Buddha Curtain: solo electronic music

Jonathan Sterne is Professor and James McGill Chair in Culture and Technology at McGill University. He does research in sound studies; media theory and historiography; science and technology studies; new media; disability studies; music; and cultural studies.

You can read Jonathan Sterne’s cancer diaries at https://www.cancerscapes.ca.

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Disabled Ecologies: Lessons From a Wounded Desert

Wed, 27 Nov 2024 09:00:00 -0000

Deep below the ground in Tucson, Arizona, lies an aquifer forever altered by the detritus of a postwar Superfund site. Disabled Ecologies: Lessons From a Wounded Desert (U California Press, 2024) by Dr. Sunaura Taylor, tells the story of this contamination and its ripple effects through the largely Mexican-American community living above. Drawing on her own complex relationship to this long-ago injured landscape, Dr. Taylor takes us with her to follow the site's disabled ecology—the networks of disability, both human and wild, that are created when ecosystems are corrupted and profoundly altered. What Taylor finds is a story of entanglements that reach far beyond the Sonoran Desert. These stories tell of debilitating and sometimes life-ending injuries, but they also map out alternative modes of connection, solidarity, and resistance—an environmentalism of the injured. An original and deeply personal reflection on what disability means in an era of increasing multispecies disablement, Disabled Ecologies is a powerful call to reflect on the kinds of care, treatment, and assistance this age of disability requires.

Our guest is: Dr. Sunaura Taylor, who is Assistant Professor of Environmental Science, Policy, and Management at the University of California, Berkeley, and author of the American Book Award–winning Beasts of Burden: Animal and Disability Liberation.

Our host is: Dr. Christina Gessler, the producer of the Academic Life podcast. She holds a PhD in history, which she uses to explore what stories we tell and what happens to those we never tell.

Playlist for listeners:

Welcome to Academic Life, the podcast for your academic journey—and beyond! You can support the show by posting, assigning or sharing episodes. Join us again to learn from more experts inside and outside the academy, and around the world. Missed any of the 225+ Academic Life episodes? You’ll find them all archived here.

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Rachael Litherland and Philly Hare, "People with Dementia at the Heart of Research: Co-Producing Research through The Dementia Enquirers Model" (Jessica Kingsley, 2024)

Sat, 16 Nov 2024 09:00:00 -0000

People with dementia are uniquely qualified to discuss the challenges of their condition and the features of effective support, but their voices are all too often drowned out in research and debates about policy. According to People with Dementia at the Heart of Research: Co-Producing Research through The Dementia Enquirers Model (Jessica Kingsley Publishers, 2024) by Rachael Litherland & Philly Hare, it's time for that to change.

Dementia Enquirers is an ambitious and novel programme of work which has tested out what it means for people with dementia to lead research and has developed a new 'driving seat' approach to co-research.

This ground-breaking book features 26 research projects led by groups of people with dementia, supported by group facilitators and academics, to make their voices heard. Topics include giving up driving, GP dementia reviews, living alone with dementia, and using AI platforms such as smart speakers. The book also describes how people with dementia shaped the entire programme, and addressed head-on issues such as ethics approval processes and complex research language. The book is a key read for anyone involved in dementia support, this research brings the voices of people with dementia to the fore to explore their experiences of researching the condition.

This interview was conducted by Dr. Miranda Melcher whose new book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.

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Johanna Hedva, "How to Tell When We Will Die: On Pain, Disability, and Doom" (Zando-Hillman Grad Books, 2024)

Sun, 27 Oct 2024 08:00:00 -0000

The long-awaited essay collection from one of the most influential voices in disability activism that detonates a bomb in our collective understanding of care and illness, showing us that sickness is a fact of life.

In the wake of the 2014 Ferguson riots, and sick with a chronic condition that rendered them housebound, Johanna Hedva turned to the page to ask: How do you throw a brick through the window of a bank if you can't get out of bed? It was not long before this essay, "Sick Woman Theory", became a seminal work on disability, because in reframing illness as not just a biological experience but a social one, Hedva argues that under capitalism--a system that limits our worth to the productivity of our bodies--we must reach for the revolutionary act of caring for ourselves and others.

How to Tell When We Will Die: On Pain, Disability, and Doom (Zando-Hillman Grad Books, 2024) expands upon Hedva's paradigm-shifting perspective in a series of slyly subversive and razor-sharp essays that range from the theoretical to the personal--from Deborah Levy and Susan Sontag to wrestling, kink, mysticism, death, and the color yellow. Drawing from their experiences with America's byzantine healthcare system, and considering archetypes they call The Psychotic Woman, The Freak, and The Hag in Charge, Hedva offers a bracing indictment of the politics that exploit sickness--relying on and fueling ableism--to the detriment of us all.

With the insight of Anne Boyer's The Undying and Leslie Jamison's The Empathy Exams, and the wit of Samantha Irby, Hedva's debut collection upends our collective understanding of disability. In their radical reimagining of a world where care and pain are symbiotic, and our bodies are allowed to live free and well, Hedva implores us to remember that illness is neither an inconvenience or inevitability, but an enlivening and elemental part of being alive.

Johanna Hedva (they/them) is a Korean American writer, artist, and musician from Los Angeles. Hedva is the author of the essay collection How To Tell When We Will Die: On Pain, Disability, and Doom, published September 2024, by Hillman Grad Books. They are also the author of the novels Your Love Is Not Good and On Hell, as well as Minerva the Miscarriage of the Brain, a collection of poems, performances, and essays. Their albums are Black Moon Lilith in Pisces in the 4th House and The Sun and the Moon. Their work has been shown in Berlin at Gropius Bau, Haus der Kulturen der Welt, Klosterruine, and Institute of Cultural Inquiry; in Los Angeles at JOAN, HRLA, in the Getty’s Pacific Standard Time, and the LA Architecture and Design Museum; The Institute of Contemporary Arts in London; Performance Space New York; Buk-Seoul Museum of Art and Gyeongnam Art Museum in South Korea; the 14th Shanghai Biennial; Migros Museum für Gegenwartskunst in Zürich; Modern Art Oxford; Museum of Modern and Contemporary Art of Bolzano; the Museum of Contemporary Art on the Moon; and in the Transmediale, Unsound, Rewire, and Creepy Teepee Festivals. Their writing has appeared in Triple Canopy, frieze, The White Review, Topical Cream, Spike, Die Zeit, and is anthologized in Whitechapel: Documents of Contemporary Art. Their essay “Sick Woman Theory,” published in 2016, has been translated into 11 languages.

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Kids Across the Spectrums: Growing Up Autistic in the Digital Age

Mon, 21 Oct 2024 08:00:00 -0000

Peoples & Things host, Lee Vinsel, talks with Meryl Alper, Associate Professor of Communication Studies at Northeastern University, about her recent book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age (MIT Press, 2023). In addition to being a professor, Alper is also an educational researcher who has worked over the past 20 years to make inclusive and accessible learning products with media organizations such as Sesame Workshop, Nickelodeon, and PBS KIDS. Vinsel and Alper talk about disability studies, the nature of Alper’s empirical work, the arc of Alper’s career, including her future projects.

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Lois Peters Agnew, "Fitter, Happier: The Eugenic Strain in Twentieth-Century Cancer Rhetoric" (U Alabama Press, 2024)

Sat, 19 Oct 2024 08:00:00 -0000

Fitter, Happier: The Eugenic Strain in Twentieth-Century Cancer Rhetoric (U Alabama Press, 2024) is a thought-provoking exploration of the relationship between cancer rhetoric, American ideals, and eugenic influences in the twentieth century. This groundbreaking work delves into the paradoxical interplay between acknowledging the genuine threat of cancer and the ingrained American ethos of confidence and control.

Agnew's meticulous research traces the topic's historical context, unveiling how cancer discourses evolved from a hushed personal concern to a public issue thanks to the rise of cancer research centers and advocacy organizations. However, she unearths a troubling dimension to these discussions--subtle yet persistent eugenic ideologies that taint cancer arguments and advocacy groups. By dissecting prevailing cancer narratives, Agnew brings into focus how ideals rooted in eliminating imperfections and embracing progress converge with concerns for safeguarding societal fitness.

Fitter, Happier scrutinizes the military origins and metaphors that permeate government policies and medical research, the transformation of cancer's association with melancholy into a rallying cry for a positive outlook, and the nuanced implications of prevention-focused dialogues. Reflecting on the varied experiences of actual cancer patients, Agnew resists the neat assimilation of these stories into a eugenic framework. Agnew's insights prompt readers to contemplate the societal meanings of disease and disability as well as how language constructs our shared reality.

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Raquel Velho on Disability, Infrastructure, and London's Public Transport System

Mon, 09 Sep 2024 08:00:00 -0000

Peoples & Things host, Lee Vinsel, talks to Raquel Velho, Associate Professor of Science and Technology Studies at Rensselaer Polytechnic Institute, about her recent book, Hacking the Underground: Disability, Infrastructure, and London's Public Transport System (U Washington Press, 2023). Hacking the Underground provides a fascinating ethnographic investigation of how disabled people navigate a transportation system that is far from accessible.

Velho finds disabled passengers constantly hacking and finding workarounds, including lots of fix-y maintenance tasks, to get from one place to another. While these workarounds involve obvious creativity, they are also the products of an unequal system and the failure to enact a more-thoroughgoing and radically-transformative redesigning of public transportation systems in the name of accessibility. Vinsel and Velho also touch on a wide range of other topics, including issues of theory and method, and they talk about what Velho is up to next.

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Jess Whatcott, "Menace to the Future: A Disability and Queer History of Carceral Eugenics" (Duke UP, 2024)

Sat, 07 Sep 2024 08:00:00 -0000

In Menace to the Future: A Disability and Queer History of Carceral Eugenics (Duke UP, 2024), Jess Whatcott traces the link between US disability institutions and early twentieth-century eugenicist ideology, demonstrating how the legacy of those ideas continues to shape incarceration and detention today. Whatcott focuses on California, examining records from state institutions and reform organizations, newspapers, and state hospital museum exhibits. They reveal that state confinement, coercive treatment, care neglect, and forced sterilization were done out of the belief that the perceived unfitness of disabled, mad, and neurodivergent people was hereditary and thus posed a biological threat—a so-called menace to the future.

Whatcott uncovers a history of disabled resistance to these institutions that predates disability rights movements, builds a genealogy of resistance, and tells a history of eugenics from below. Theorizing how what they call “carceral eugenics” informed state treatment of disabled, mad, and neurodivergent people a century ago, Whatcott shows not only how that same logic still exists in secure treatment facilities, state prisons, and immigration detention centers, but also why it must continue to be resisted.

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Elizabeth A. Wahler and Sarah C. Johnson, "Creating a Person-Centered Library: Best Practices for Supporting High-Needs Patrons (Bloomsbury, 2023)

Wed, 28 Aug 2024 08:00:00 -0000

Creating a Person-Centered Library: Best Practices for Supporting High-Needs Patrons (Bloomsbury, 2023) provides a comprehensive overview of various services, programs, and collaborations to help libraries serve high-needs patrons as well as strategies for supporting staff working with these individuals. While public libraries are struggling to address growing numbers of high-needs patrons experiencing homelessness, food insecurity, mental health problems, substance abuse, and poverty-related needs, this book will help librarians build or contribute to library services that will best address patrons' psychosocial needs. Beth Wahler and Sarah C. Johnson, experienced in both library and social work, begin by providing an overview of patrons' psychosocial needs, structural and societal reasons for the shift in these needs, and how these changes impact libraries and library staff. Chapters focus on best practices for libraries providing person-centered services and share lessons learned, including information about special considerations for certain patron populations that might be served by individual libraries. The book concludes with information about how library organizations can support public library staff. Librarians and library students who are concerned about both patrons and library staff will find the practical advice in this book invaluable.

NBN can get 20% off Creating a Person-Centered Library by using the discount code NBN20 on the Blooomsbury.com US website.

Beth Wahler, PhD, MSW is founder and principal consultant at Beth Wahler Consulting, LLC and affiliated research faculty and previous director of the School of Social Work at the University of North Carolina- Charlotte. Dr. Wahler is a social work consultant, researcher, and experienced administrator whose primary focus is trauma-informed librarianship, library strategies for addressing patrons’ or community psychosocial needs, supporting library staff with serving high-needs patrons and reducing work-related stress/trauma, and various kinds of collaborations, services, and programs to meet patron, staff, or community needs. She has also published and presented internationally on library patron and staff needs, trauma-informed librarianship, and library/social work collaborations.

Sarah C. Johnson, MLIS, LMSW, is an Adjunct Lecturer at the School of Information Sciences at the University of Illinois at Urbana-Champaign where she teaches a graduate course on Library Social Work. As a researcher and educator, Sarah is the creator and host of the Library Social Work podcast which aims to inform the public about interdisciplinary collaborations between social service providers and public libraries.

Dr. Michael LaMagna is the Information Literacy Program & Library Services Coordinator and Professor of Library Services at Delaware County Community College.

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Heather Murray, "Asylum Ways of Seeing: Psychiatric Patients, American Thought and Culture" (U Pennsylvania Press, 2022)

Tue, 13 Aug 2024 08:00:00 -0000

Asylum Ways of Seeing: Psychiatric Patients, American Thought and Culture (University of Pennsylvania Press, 2021) by Dr. Heather Murray is a cultural and intellectual history of people with mental illnesses in the twentieth-century United States. While acknowledging the fraught, and often violent, histories of American psychiatric hospitals, Heather Murray also suggests that it is in these hospitals that patients became more intense observers: they gave more conscious consideration to institutional and broader kinds of citizenship, to the nature and needs of communities versus those of individuals, to scientific modernity, and to human rights and solidarities among the suffering. All of these ideas have animated twentieth-century America, and, as Dr. Murray shows, have not just flowed into psychiatric hospitals but outward from them as well. These themes are especially clear within patients' intimate, creative, and political correspondence, writings, and drawings, as well as in hospital publications and films.

This way of thinking and imagining contrasts with more common images of the patient—as passive, resigned, and absented from the world in the cloistered setting of the hospital—that have animated psychiatry over the course of the twentieth century. Asylum Ways of Seeing traces how it is that patient resignation went from being interpreted as wisdom in the early twentieth century, to being understood as a capitulation in scientific and political sources by mid-century, to being seen as a profound violation of selfhood and individual rights by the century's end. In so doing, it makes a call to reconsider the philosophical possibilities within resignation.

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Yoga, Disability, and Animism, with Theo Wildcroft

Sun, 11 Aug 2024 08:00:00 -0000

In this episode, Dr Pierce Salguero sits down with Dr Theodora Wildcroft, a researcher, anthropologist, and long-time teacher of what she calls “post-lineage yoga.” We discuss Theo's ethnographic research on yoga in the UK, focusing on its connections with animism, paganism, and other somatic practices. We also dive into Theo’s personal approach to yoga as a liberatory practice that allows diverse bodies and minds to thrive. Along the way, we touch on disability, neuro-divergence, cultural appropriation, and the inescapable influence of colonialism for contemporary yogis.

Remember, if you want to hear from more experts on Buddhism, Asian medicine, and embodied spirituality, subscribe to Blue Beryl for monthly episodes. Please enjoy!

Resources mentioned in this episode:

Pierce Salguero is a transdisciplinary scholar of health humanities who is fascinated by historical and contemporary intersections between Buddhism, medicine, and crosscultural exchange. He has a Ph.D. in History of Medicine from the Johns Hopkins School of Medicine (2010), and teaches Asian history, medicine, and religion at Penn State University’s Abington College, located near Philadelphia. www.piercesalguero.com.

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Ella Houston, "Advertising Disability" (Routledge, 2024)

Sat, 10 Aug 2024 08:00:00 -0000

Ella Houston's book Advertising Disability (Routledge, 2024) invites Cultural Disability Studies to consider how advertising, as one of the most ubiquitous forms of popular culture, shapes attitudes towards disability.

The research presented in the book provides a much-needed examination of the ways in which disability and mental health issues are depicted in different types of advertising, including charity 'sadvertisements', direct-to-consumer pharmaceutical advertisements and 'pro-diversity' brand campaigns. Textual analyses of advertisements from the eighteenth century onwards reveal how advertising reinforces barriers facing disabled people, such as stigmatising attitudes, ableist beauty 'ideals', inclusionism and the unstable crutch of charity.

As well as investigating how socio-cultural meanings associated with disability are influenced by multimodal forms of communication in advertising, insights from empirical research conducted with disabled women in the United Kingdom and the United States are provided. Moving beyond traditional textual approaches to analysing cultural representations, the book emphasises how disabled people and activists develop counternarratives informed by their personal experiences of disability, challenging ableist messages promoted by advertisements. From start to finish, activist concepts developed by the Disabled People's Movement and individuals' embodied knowledge surrounding disability, impairments and mental health issues inform critiques of advertisements.

Its critically informed approach to analysing portrayals of disability is relevant to advertisers, scholars and students in advertising studies and media studies who are interested in portraying diversity in marketing and promotional materials as well as scholars and students of disability studies and sociology more broadly.

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Sign Language Brokering in Deaf-Hearing Families

Mon, 29 Jul 2024 08:00:00 -0000

Emily Pacheco speaks with Professor Jemina Napier (Heriot-Watt University, Scotland) about her book, Sign Language Brokering in Deaf-Hearing Families (Palgrave Macmillan, 2021). The conversation focuses on child and sign language brokering, the innovative methodology Dr. Napier employed in her study, and the impacts of researching sign language brokering as a languaging practice.

For additional resources, show notes, and transcripts, go here.

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Fella Benabed, "Applied Global Health Humanities: Readings in the Global Anglophone Novel" (de Gruyter, 2024)

Sat, 27 Jul 2024 08:00:00 -0000

Fella Benabed's book Applied Global Health Humanities: Readings in the Global Anglophone Novel (de Gruyter, 2024) highlights the importance of global Anglophone literature in global health humanities, shaping perceptions of health issues in the Global South and among minorities in the Global North. Using twelve novels, it explores the historical, political, sociocultural, ethical, and environmental aspects of health by analyzing the experiences of characters who suffer from infectious diseases, mental disorders, or disabilities, and who seek holistic healing practices.

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Patrick McKelvey, "Disability Works: Performance After Rehabilitation" (NYU Press, 2024)

Tue, 23 Jul 2024 08:00:00 -0000

In 1967, the US government funded the National Theatre of the Deaf, a groundbreaking rehabilitation initiative employing deaf actors. This project aligned with the postwar belief that transforming bodies, minds, aesthetics, and institutions could liberate disabled Americans from economic reliance on the state, and demonstrated the growing belief that performance could provide job opportunities for people with disabilities.

Disability Works: Performance After Rehabilitation (NYU Press, 2024) offers an original cultural history of disability and performance in modern America, exploring rehabilitation’s competing legacies. The book highlights an unexpected alliance of rehabilitation professionals, deaf teachers, policy makers, disability activists, queer artists, and religious leaders who championed performance’s rehabilitative potential. At the same time, some disabled artists imagined a different political itinerary for theatrical practice. Rather than acquiescing to the terms of productive citizenship, these artists recuperated rehabilitation as a creative resource for imagining and building a world beyond work.

Using previously unexplored archives, Disability Works portrays the history of disabled Americans’ performance labor as both a national aspiration and a national problem. The book reveals how disabled artists and activists ingeniously used rehabilitative resources to fuel their performance practices, breaking free from the grasp of rehabilitation and fostering more just institutions. From state-funded “sign-mime” to Black modern dance, community theatre to Stanislavskian actor training, speculative infrastructures to epistolary performance, Disability Works recovers an expansive repertoire of aesthetic and infrastructural investigations into the terms of how disability works in modern American culture.

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Sasha Warren, "Storming Bedlam: Madness, Mental Health, and Revolt" (Common Notions, 2024)

Wed, 10 Jul 2024 08:00:00 -0000

Mental health care and its radical possibilities reimagined in the context of its global development under capitalism.

The contemporary world is oversaturated with psychiatric programs, methods, and reforms promising to address any number of "crises" in mental health care. When these fail, alternatives to the alternatives simply pile up and seem to lead nowhere.

In an original and compelling account of radical experimentation in psychiatry, Warren traces a double movement in the global development of mental health services throughout the 20th century: a radical current pushing totalizing and idealistic visions of care to their practical limits and a reactionary one content with managing or eliminating chronically idle surplus populations.

Moral treatment is read in light of the utopian socialist movement; the theory of communication in the French Institutional Psychotherapy of Félix Guattari is put into conversation with the Brazilian art therapy of Nise da Silveira; the Mexican anti-psychiatry movement's reflections on violence are thought together with theories of violence developed in Argentinian psychoanalysis and Frantz Fanon's anticolonial therapeutic practice; the social form of the Italian Democratic Psychiatry and Brazilian anti-institutional movements are contrasted with the anti-psychiatry factions of the 1960s-70s North American counterculture.

Storming Bedlam: Madness, Mental Health, and Revolt (Common Notions, 2024) subverts the divisions between social and biological approaches to mental health or between psychiatry and anti-psychiatry. By exploring the history of psychiatry in the context of revolution, war, and economic development, Warren outlines a minor history of approaches to mental health care grounded in common struggles against conditions of scarcity, poverty, isolation, and exploitation.

Sasha Warren is a writer based in Minneapolis. His experiences within the psychiatric system and commitment to radical politics led him to cofound the group Hearing Voices Twin Cities, which provides an alternative social space for individuals to discuss often stigmatized extreme experiences and network with one-another. Following the George Floyd Uprising in 2020, he founded the project Of Unsound Mind to trace the histories of psychiatry, social work, and public health's connections to policing, prisons, and various disciplinary and managerial technologies.

Resources:

North American Networks of Alternatives to Psychiatry altpsy.net
Of Unsound Mind Substack

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Catherine Tan, "Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge" (Columbia UP, 2024)

Sat, 06 Jul 2024 08:00:00 -0000

Movements that take issue with conventional understandings of autism spectrum disorder, a developmental disability, have become increasingly visible. Drawing on more than three years of ethnographic fieldwork and interviews with participants, Dr. Catherine Tan investigates two autism-focused movements, shedding new light on how members contest expert authority. Examining their separate struggles to gain legitimacy and represent autistic people, she develops a new account of the importance of social movements as spaces for constructing knowledge that aims to challenge dominant frameworks.

Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge (Columbia University Press, 2024) examines the autistic rights and alternative biomedical movements, which reimagine autism in different and conflicting ways: as a difference to be accepted or as a sickness to treat. Both, however, provide a window into how ideas that conflict with dominant beliefs develop, take hold, and persist. The autistic rights movement is composed primarily of autistic adults who contend that autism is a natural human variation, not a disorder, and advocate for social and cultural inclusion and policy changes. The alternative biomedical movement, in contrast, is dominated by parents and practitioners who believe in the disproven idea that vaccines trigger autism and seek to reverse it with scientifically unsupported treatments. Both movements position themselves in opposition to researchers, professionals, and parents outside their communities. Spaces on the Spectrum offers timely insights into the roles of shared identity and communal networks in movements that question scientific and medical authority.

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John Thomas Maier, "The Disabled Will: A Theory of Addiction" (Routledge, 2024)

Wed, 26 Jun 2024 08:00:00 -0000

John T. Maier's The Disabled Will: A Theory of Addiction (Routledge Press, 2024) defends a comprehensive new vision of what addiction is and how people with addictions should be treated. The author argues that, in addition to physical and intellectual disabilities, there are volitional disabilities - disabilities of the will - and that addiction is best understood as a species of volitional disability. This theory serves to illuminate long-standing philosophical and psychological perplexities about addiction and addictive motivation. It articulates a normative framework within which to understand prohibition, harm reduction, and other strategies that aim to address addiction. The argument of this book is that these should ultimately be evaluated in terms of reasonable accommodations for addicted people and that the priority of addiction policy should be the provision of such accommodations. What makes this book distinctive is that it understands addiction as a fundamentally political problem, an understanding that is suggested by standard legal approaches to addiction, but which has not received a sustained defense in the previous philosophical or psychological literature. This text marks a significant advance in the theory of addiction, one which should reshape our understanding of addiction policy and its proper aims.

Jeff Adler is an ex-linguist and occasional contributor to New Books Network!

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Slava Greenberg, "Animated Film and Disability: Cripping Spectatorship" (Indiana UP, 2023)

Fri, 21 Jun 2024 08:00:00 -0000

While many live-action films portray disability as a spectacle, "crip animation" (a genre of animated films that celebrates disabled people's lived experiences) uses a variety of techniques like clay animation, puppets, pixilation, and computer-generated animation to represent the inner worlds of people with disabilities. Crip animation has the potential to challenge the ableist gaze and immerse viewers in an alternative bodily experience.

In Animated Film and Disability: Cripping Spectatorship (Indiana University Press, 2023), Dr. Slava Greenberg analyses over 30 animated works about disabilities, including Rocks in My Pockets, An Eyeful of Sound, and A Shift in Perception. He considers the ableism of live-action cinematography, the involvement of filmmakers with disabilities in the production process, and the evocation of the spectators' senses of sight and hearing, consequently subverting traditional spectatorship and listenership hierarchies. In addition, Dr. Greenberg explores physical and sensory accessibility in theatres and suggests new ways to accommodate cinematic screenings.

Offering an introduction to disability studies and crip theory for film, media, and animation scholars, Animated Film and Disability demonstrates that crip animation has the power to breach the spectator's comfort, evoking awareness of their own bodies and, in certain cases, their social privileges.

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Dasha Kiper, "Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain" (Random House, 2023)

Tue, 18 Jun 2024 08:00:00 -0000

If you’ve ever worked with dementia patients before, you know how unique and bizarre the experience can be, and how little the stereotypes actually hold up to the experience. Even knowing about the diagnosis often does little to help us in caring for people, and many caregivers find themselves getting sucked into behavioral loops of their own. This is because your brain is not wired to deal with the altered form of reality that dementia patients inhabit. Evolution has not equipped us to deal with these dynamics.

Unpacking all this is our guest today, Dasha Kiper in her book Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain (Random House, 2023). Having both worked with dementia patients and run support groups for caregivers, she’s seen patterns play out over countless situations, and has mapped the cognitive landscape of people working to take care of those afflicted with the disease. In a series of engaging and provocative essays, she’s able to elucidate our limitations, the various neurological traps we are often tempted to fall into, hopefully offering caregivers some clarity on themselves and just how far from reality this work often takes them.

Dasha Kiper is the consulting clinical director of support groups at an Alzheimer’s organization, and holds an MA in clinical psychology from Columbia University.

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Test Subjects

Mon, 17 Jun 2024 08:00:00 -0000

Season Two erupts in our ears with a film-noir soundscape—an eerie voice utters strange and disjointed phrases and echoing footsteps lead to sirens and gunshots. What on Earth are we listening to? We unravel the mystery with NYU media professor Mara Mills who studies the historical relationship between disability and media technologies.

In Episode 8, “Test Subjects,” we examine the strange and obscure history of sound’s use as a psychological diagnostic tool. In the late 20th century, while many disabilities were eliminated through medical interventions, a host of new disabilities were invented, especially within the realm of psychology. Mills’s historical work in the audio archives of American Foundation for the Blind reveals how auditory projective testing was used to diagnose blind people with additional psychological disabilities. As we listen to these strange archival sounds, we learn how culture and technology shape the history of human ability and disability.

Read Mara Mill’s article on auditory projective tests, “Evocative Object: Auditory Inkblot” and visit NYU’s Center for Disability Studies, which she co-directs with Faye Ginsburg. Thanks to archivist Helen Selsdon and the American Foundation for the Blind for the use of the auditory projective tests.

This episode’s theme music is by Mack Hagood with additional music by Graeme Gibson, Blue Dot Sessions, Claude Debussy, and Duke Ellington. The show was edited by Craig Eley and Mack Hagood.

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Jessica Leigh Kirkness, "The House with All the Lights on: Three Generations, One Roof, a Language of Light" (Allen & Unwin, 2023)

Fri, 31 May 2024 08:00:00 -0000

Emily Pacheco speaks with writer and researcher Jessica Kirkness about her memoir, The House with All the Lights on: Three Generations, One Roof, a Language of Light (Allen & Unwin, 2023). Jessica has published in Meanjin and The Conversation, as well as other outlets. Her PhD focused on the ‘hearing line’: the invisible boundary between Deaf and hearing cultures. She is also a teacher of nonfiction writing at Macquarie University in Sydney, Australia.

The House With All The Lights On explores linguistic and cultural dynamics within Deaf-hearing families. Jessica shares her experience having Deaf grandparents and navigating the cultural borderline between Deaf and hearing cultures. It is a wonderful memoir about family, the complexities of identity, and linguistic diversity.

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Faye Ginsburg and Rayna Rapp, "Disability Worlds" (Duke UP, 2024)

Thu, 30 May 2024 08:00:00 -0000

In Disability Worlds (Duke UP, 2024), Faye Ginsburg and Rayna Rapp chronicle and theorize two decades of immersion in New York City’s wide-ranging disability worlds as parents, activists, anthropologists, and disability studies scholars. They situate their disabled children’s lives among the experiences of advocates, families, experts, activists, and artists in larger struggles for recognition and rights. Disability consciousness, they show, emerges in everyday politics, practices, and frictions. Chapters consider dilemmas of genetic testing and neuroscientific research, reimagining kinship and community, the challenges of “special education,” and the perils of transitioning from high school. They also highlight the vitality of neurodiversity activism, disability arts, politics, and public culture.

Disability Worlds reflects the authors’ anthropological commitments to recognizing the significance of this fundamental form of human difference. Ginsburg and Rapp’s conversations with diverse New Yorkers reveal the bureaucratic constraints and paradoxes established in response to the disability rights movement, as well as the remarkable creativity of disabled people and their allies who are opening pathways into both disability justice and disability futures.

A transcript of this discussion is available here.

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Premilla Nadasen, "Care: The Highest Stage of Capitalism" (Haymarket Books, 2023)

Sat, 25 May 2024 08:00:00 -0000

During the COVID pandemic, billions of dollars in relief aid was sent out to help us ride out the storm, although many people who struggled through it might scratch their heads at such a number, having seen little of it make any concrete impact in their own lives. This discrepancy is indicative of the underlying problem with the contemporary care economy, a series of federal and state programs, healthcare facilities and NGO’s, all trying to bend the needs of those under their care to the mechanisms and incentives laid out by capitalism. The result is a massive apparatus that regularly fails to fulfill its supposed intentions, leaving workers and those in need of help in precarious and often dangerous situations.

This apparatus is untangled and explained in clear detail by Premilla Nadasen in her book Care: The Highest Stage of Capitalism (Haymarket Books, 2023). Informed by both her work as a historian and as a political activist, she manages to untangle and explain why the massive apparatus regularly fails to fulfill its purpose. She also outlines offramps, forms of resistance that workers and activists have taken to develop alternative anticapitalist forms of care that might someday allow us to truly flourish together.

Premilla Nadasen is a professor of history at Barnard College, Columbia University. She is the co-director of the Barnard Center for Research on Women. She is also the author of Welfare Warriors: The Welfare Rights Movement in the United States and Household Workers Unite: The Untold Story of African American Women Who Built a Movement.

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Building a More Inclusive Society: Disability and Work in Timor-Leste

Sat, 25 May 2024 08:00:00 -0000

What does an inclusive society look like? And what are the challenges and opportunities when the society in question, Timor-Leste, is one of the most resource-constrained in Southeast Asia? My guest today is interested in these questions of inclusion and participation, and argues that people with a disability are a key component of a truly inclusive society – and that employment can be a key policy lever for inclusion. With Timor-Leste recently ratifying the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), now is the time, she says, for building an evidence base for employment as a foundational right that has transformational potential not only for people with disability but for the broader community.

Dr Kim Bulkeley from the Faculty of Medicine and Health joins Dr Natali Pearson to share the work she is doing ion disability and work in Timor-Leste. Dr Kim Bulkeley is a Co-head of the WHO Collaborating Centre for strengthening rehabilitation capacity in health systems, senior lecturer in the Sydney School of Health Sciences and a stream leader in the Centre for Disability Research and Policy.

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Sunaura Taylor, "Disabled Ecologies: Lessons from a Wounded Desert" (U California Press, 2024)

Tue, 21 May 2024 08:00:00 -0000

A powerful analysis and call to action that reveals disability as one of the defining features of environmental devastation and resistance.

Deep below the ground in Tucson, Arizona, lies an aquifer forever altered by the detritus of a postwar Superfund site. Disabled Ecologies: Lessons from a Wounded Desert (U California Press, 2024) tells the story of this contamination and its ripple effects through the largely Mexican American community living above. Drawing on her own complex relationship to this long-ago injured landscape, Sunaura Taylor takes us with her to follow the site's disabled ecology—the networks of disability, both human and wild, that are created when ecosystems are corrupted and profoundly altered.

What Taylor finds is a story of entanglements that reach far beyond the Sonoran Desert. These stories tell of debilitating and sometimes life-ending injuries, but they also map out alternative modes of connection, solidarity, and resistance—an environmentalism of the injured. An original and deeply personal reflection on what disability means in an era of increasing multispecies disablement, Disabled Ecologies is a powerful call to reflect on the kinds of care, treatment, and assistance this age of disability requires.

A full transcript of the interview is available for accessibility.

Sunaura Taylor is an Assistant Professor in the Division of Society and Environment at the University of California, Berkeley. Taylor is a scholar and artist who works at the intersection of disability studies, environmental humanities, animal studies, environmental justice, feminist science studies, and art practice.

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Sony Coráñez Bolton, "Crip Colony: Mestizaje, US Imperialism, and the Queer Politics of Disability in the Philippines" (Duke UP, 2023)

Tue, 14 May 2024 08:00:00 -0000

In Crip Colony: Mestizaje, US Imperialism, and the Queer Politics of Disability in the Philippines (Duke UP, 2023), Sony Coráñez Bolton examines the racial politics of disability, mestizaje, and sexuality in the Philippines. Drawing on literature, poetry, colonial records, political essays, travel narratives, and visual culture, Coráñez Bolton traces how disability politics colluded with notions of Philippine mestizaje. He demonstrates that Filipino mestizo writers in the late nineteenth and early twentieth centuries used mestizaje as a racial ideology of ability that marked Indigenous inhabitants of the Philippines as lacking in civilization and in need of uplift and rehabilitation. Heteronormative, able-bodied, and able-minded mixed-race Filipinos offered a model and path for assimilation into the US empire. In this way, mestizaje allowed for supposedly superior mixed-race subjects to govern the archipelago in collusion with American imperialism. By bringing disability studies together with studies of colonialism and queer-of-color critique, Coráñez Bolton extends theorizations of mestizaje beyond the United States and Latin America while considering how Filipinx and Filipinx American thought fundamentally enhances understandings of the colonial body and the racial histories of disability.

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Coreen McGuire, "Measuring Difference, Numbering Normal: Setting the Standards for Disability in the Interwar Period" (Manchester UP, 2020)

Sat, 20 Apr 2024 08:00:00 -0000

Measurements, and their manipulation, have been underestimated as crucial historical forces motivating and guiding the way we think about disability.

Using measurement technology as a lens, and examining in particular the measurement of hearing and breathing, Coreen McGuire's book Measuring Difference, Numbering Normal: Setting the Standards for Disability in the Interwar Period (Manchester UP, 2020) draws together several existing discussions on disability, phenomenology, healthcare, medical practice, big data, embodiment, and emerging medical and scientific technologies around the turn of the twentieth century. These are popular topics of scholarly attention but have not, until now, been considered as interconnected topics within a single book. As such, this work connects several important, and usually separate academic subject areas and historical specialisms. The standards embedded in instrumentation created strict, but, ultimately arbitrary thresholds of what is categorised as normal and abnormal. Considering these standards from a long historical perspective reveals how these dividing lines shifted when pushed.

This book is available open access here.

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Margaret Price, "Crip Spacetime: Access, Failure, and Accountability in Academic Life" (Duke UP, 2024)

Wed, 03 Apr 2024 08:00:00 -0000

In Crip Spacetime: Access, Failure, and Accountability in Academic Life (Duke University Press, 2024), Margaret Price intervenes in the competitive, productivity-focused realm of academia by sharing the everyday experiences of disabled academics. Drawing on more than three hundred interviews and survey responses, Price demonstrates that individual accommodations--the primary way universities address accessibility--actually impede access rather than enhance it. She argues that the pains and injustices encountered by academia's disabled workers result in their living and working in realities different from nondisabled colleagues: a unique experience of space, time, and being that Price theorizes as "crip spacetime." She explores how disability factors into the exclusionary practices found in universities, with multiply marginalized academics facing the greatest harms. Highlighting the knowledge that disabled academics already possess about how to achieve sustainable forms of access, Price boldly calls for the university to move away from individualized models of accommodation and toward a new system of collective accountability and care.

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Mimi Khúc, "dear elia: Letters from the Asian American Abyss" (Duke UP, 2023)

Sun, 03 Mar 2024 09:00:00 -0000

Mimi Khúc is a PhD, writer, scholar, and teacher of things unwell. She is currently the Co-Editor of The Asian American Literary Review and an adjunct lecturer in Disability Studies at Georgetown University. Her work includes Open in Emergency, a hybrid book-arts project decolonizing Asian American mental health; the Asian American Tarot, a reimagined deck of tarot cards; and the Open in Emergency Initiative, an ongoing national project developing mental health arts programming with universities and community spaces.

Her new creative-critical, genre-bending book on mental health and a pedagogy of unwellness, dear elia: Letters from the Asian American Abyss (Duke University Press, 2024), is a journey into the depths of Asian American unwellness at the intersections of ableism, model minoritization, and the university, and an exploration of new approaches to building collective care.

Julia H. Lee is professor of Asian American Studies at the University of California, Irvine. She is the author of three books: Interracial Encounters: Reciprocal Representations in African and Asian American Literatures, 1896-1937 (New York University Press, 2011), Understanding Maxine Hong Kingston (University of South Carolina Press, 2018), and The Racial Railroad (New York University Press, 2022). With Professor Josephine Lee, she is co-editor of Asian American Literature in Transition, 1850-1930 (Cambridge University Press, 2021), a Choice Outstanding Academic Title for 2022. You can find her on Instagram @julia.x.lee.

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Marchella Ward, "Blindness and Spectatorship in Ancient and Modern Theatres: Towards New Ways of Looking and Looking Back" (Cambridge UP, 2023)

Fri, 01 Mar 2024 09:00:00 -0000

The use of disability as a metaphor is ubiquitous in popular culture – nowhere more so than in the myths, stereotypes and tropes around blindness. To be 'blind' has never referred solely to the inability to see. Instead blindness has been used as shorthand for, among other things, a lack of understanding, immorality, closeness to death, special insight or second sight. Although these 'meanings' attached to blindness were established as early as antiquity, readers, receivers and spectators into the present have been implicated in the stereotypes, which persist because audiences can be relied on to perpetuate them.

Marchella Ward's book Blindness and Spectatorship in Ancient and Modern Theatres: Towards New Ways of Looking and Looking Back (Cambridge UP, 2023) argues for a new way of seeing – and of understanding classical reception - by offering assemblage-thinking as an alternative to the presumed passivity of classical influence. And the theatre, which has been (incorrectly) assumed to be principally a visual medium, is the ideal space in which to investigate new ways of seeing.

Corinne Doria is a historian specializing in the social history of medicine. She is a lecturer at the Chinese University of Hong Kong in Shenzhen and teaches Disability Studies at Sciences-Po (Paris). Her work focuses on the history of ophthalmology and visual impairment in the West.

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Aaron J. Jackson, "Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities" (U California Press, 2021)

Sun, 25 Feb 2024 09:00:00 -0000

Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities (U California Press, 2021) undertakes an exploration of how men shape their identities in the context of caregiving. Anthropologist Aaron J. Jackson fuses ethnographic research and creative nonfiction to offer an evocative account of what is required for men to create habitable worlds and find some kind of “normal” when their circumstances are anything but. Combining stories from his fieldwork in North America with reflections on his own experience caring for his severely disabled son, Jackson argues that care has the potential to transform our understanding of who we are and how we relate to others.

Aaron J. Jackson is a Lecturer in Anthropology at Victoria University. His research focuses on fatherhood, care, and disability.

Alize Arıcan is a Postdoctoral Associate at Rutgers University's Center for Cultural Analysis. She is an anthropologist whose research focuses on urban renewal, futurity, care, and migration in Istanbul, Turkey. Her work has been featured in Current Anthropology, City & Society, Radical Housing Journal, and entanglements: experiments in multimodal ethnography.

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Matthew Rubery, "Reader's Block: A History of Reading Differences" (Stanford UP, 2022)

Sun, 28 Jan 2024 09:00:00 -0000

Matthew Rubery's book Reader’s Block: A History of Reading Differences (Stanford UP, 2022) explores the influence neurodivergence has on the ways individuals read. This alternative history of reading is one of the few books which tells the stories of "atypical" readers and the impact had on their lives by neurological conditions affecting their ability to make sense of the printed word: from dyslexia, hyperlexia, and alexia to synesthesia, hallucinations, and dementia. Rubery's focus on neurodiversity aims to transform our understanding of the very concept of reading. Drawing on personal testimonies gathered from literature, film, life writing, social media, medical case studies, and other sources to express how cognitive differences have shaped people's experiences both on and off the page, Rubery contends that there is no single activity known as reading. Instead, there are multiple ways of reading (and, for that matter, not reading) despite the ease with which we use the term. Pushing us to rethink what it means to read; Reader's Block moves toward an understanding of reading as a spectrum that is capacious enough to accommodate the full range of activities documented in this fascinating and highly original book.

Matthew Rubery is Professor of Modern Literature at Queen Mary University of London. His earlier books include The Novelty of Newspapers: Victorian Fiction after the Invention of the News (Oxford, 2009) and The Untold Story of the Talking Book (Harvard University Press, 2016). He has also edited or co-edited Audiobooks, Literature, and Sound Studies (Routledge, 2011), Secret Commissions: An Anthology of Victorian Investigative Journalism (Broadview, 2012), and Further Reading (Oxford, 2020). Currently, he is working on a history of “projected reading”, a form of assisted reading that involves projecting books on ceilings which a patient can read while lying in bed. This was first used to help World War 2 soldiers injured on duty who could not read conventionally. Matthew also likes to collaborate with charities and other organisations to think about ways of reading more suited to people with disabilities or neurodivergent readers.

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Kate Annett-Hitchcock, "The Intersection of Fashion and Disability: A Historical Analysis" (Bloomsbury Visual Arts, 2023)

Fri, 26 Jan 2024 09:00:00 -0000

The history of the fashion industry has been well written as it relates to people who conform to certain physical norms and cultural stereotypes, whereas the inequality in access to the world of fashion has been largely ignored. Despite this lack of coverage, much work has taken place over the centuries to enable people who live with disability to participate in fashionable culture. This book tells that story via perspectives of notable historical figures, events and movements, and continues the discourse with a look at some of the contemporary developments in clothing and fashion.

The Intersection of Fashion and Disability: A Historical Analysis (Bloomsbury, 2023) by Dr. Kate Annett-Hitchcock takes the long view, from early attempts to conceal 'unsightly' bodies of royalty and nobility via creative innovation through growing contemporary awareness of inclusive fashion and how future work can be driven by technology and cultural acceptance.

This interview was conducted by Dr. Miranda Melcher whose forthcoming book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.

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Skylar Bayer and Gabriela Serrato Marks, "Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias" (Columbia UP, 2023)

Mon, 18 Dec 2023 09:00:00 -0000

People with disabilities are underrepresented in STEM fields, and all too often, they face isolation and ableism in academia. Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias (Columbia UP, 2023) is a collection of powerful first-person stories by current and former scientists with disabilities or chronic conditions who have faced changes in their careers, including both successes and challenges, because of their health. It gives voice to common experiences that are frequently overlooked or left unspoken. These deeply personal accounts describe not only health challenges but also the joys, sorrows, humor, and wonder of science and scientists.

With a breadth of perspectives on being disabled or chronically ill, these stories highlight the intersectionality of minoritized identities with the disability community. Uncharted features essays by contributors who are d/Deaf, blind, neurodivergent, wheelchair users, have experienced traumatic brain injuries, have blood sugar disorders, have rare medical diagnoses, or have received psychiatric diagnoses, among many others. In many cases, the scientific field is not fully accessible to them, and they frankly describe struggling as well as thriving alongside their conditions.

Skylar Bayer is a marine ecologist and science communicator. Currently a marine habitat resource specialist in the NOAA Fisheries Alaska Regional Office, she received her Ph.D. from the University of Maine’s School of Marine Sciences for research on the sex lives of scallops and is a producer for the Story Collider.

Gabi Serrato Marks is a geochemist turned writer. She received her PhD in the MIT-WHOI Joint Program in Oceanography and is now a partner at the scientist-focused PR firm Stellate Communications. Her work has been published in Scientific American and Audubon and on the PBS Eons YouTube Channel

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Isaac Soon, "A Disabled Apostle: Impairment and Disability in the Letters of Paul" (Oxford UP, 2023)

Sat, 16 Dec 2023 09:00:00 -0000

For generations, Pauline scholars have responded in different ways to the Apostle’s “thorn in the flesh” (2 Cor. 12:7), our clearest indication that Paul was disabled—some with clinical diagnoses along biomedical lines, more with reticence and agnosticism as to the specifics of Paul’s disability, and others with doubts that Paul could have accomplished his apostolic work had he been physically impaired.

On this episode, Isaac T. Soon joined the New Books Network to discuss his paradigm-pushing study A Disabled Apostle: Impairment and Disability in the Letters of Paul (Oxford UP, 2023), a revision of his recent Durham Ph.D. dissertation with the same title, which employs the insights of disability studies and “biographical criticism” not simply to exegete Paul’s enigmatic “thorn in the flesh” but to reflect more broadly on the Apostle’s rhetoric of disability and impairment in its ancient context. Simultaneously, Soon contends that by an awareness of embodied language in Paul’s letters and concepts of bodily normativity contemporaneous to him, we can know three of Paul’s disabilities: (1) inhabitation by a demonic/malevolent force, (2) penile circumcision, and (3) short stature. Meticulously researched, methodologically grounded, and robustly argued, this study offers thought-provoking resources for adherents of Paul, students of the ancient world, and Neutestamentlers alike to consider the impact of Paul’s physical body on the message that he was compelled to share among the first-century Gentile world.

Isaac T. Soon (Ph.D., Durham University, 2021) is Assistant Professor of Religious Studies at Crandall University in Moncton, New Brunswick, Canada. Dr. Soon’s research focuses on the intersection of New Testament and early Christian texts with disability studies, including a current project on conceptions of bodily normativity and the portrayal of early Christian figures in ancient literature. Previous work of Isaac’s has been published in forums such as the Journal of Biblical Literature, New Testament Studies, Novum Testamentum, Vigiliae Christianae, the Journal for the Study of Judaism, Religions, Early Christianity, the Journal for the Study of the Pseudepigrapha, and the Journal for the Jesus Movement in its Jewish Setting.

Rob Heaton (Ph.D., University of Denver, 2019) hosts Biblical Studies conversations for New Books in Religion and teaches New Testament, Christian origins, and early Christianity at Anderson University in Indiana. He recently authored The Shepherd of Hermas as Scriptura Non Grata: From Popularity in Early Christianity to Exclusion from the New Testament Canon (Lexington Books, 2023). For more about Rob and his work, or to offer feedback related to this episode, please visit his website at https://www.robheaton.com.

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Julia Watts Belser, "Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole" (Beacon Press, 2023)

Tue, 12 Dec 2023 09:00:00 -0000

A transformative spiritual companion and deep dive into disability politics that reimagines disability in the Bible and contemporary culture.

"What's wrong with you?"

Scholar, activist, and rabbi Julia Watts Belser is all too familiar with this question. What's wrong isn't her wheelchair, though--it's exclusion, objectification, pity, and disdain.

Our attitudes about disability have such deep cultural roots that we almost forget their sources. But open the Bible and disability is everywhere. Moses believes his stutter renders him unable to answer God's call. Jacob's encounter with an angel leaves him changed not just spiritually but physically: he gains a limp. For centuries, these stories have been told and retold in ways that treat disability as a metaphor for spiritual incapacity or as a challenge to be overcome.

Through fresh and unexpected readings of the Bible, Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole (Beacon Press, 2023) instead paints a luminous portrait of what it means to be disabled and one of God's beloved. Belser delves deep into sacred literature, braiding the insights of disabled, feminist, Black, and queer thinkers with her own experiences as a queer disabled Jewish feminist. She talks back to biblical commentators who traffic in disability stigma and shame. What unfolds is a profound gift of disability wisdom, a radical act of spiritual imagination that can guide us all toward a powerful reckoning with each other and with our bodies.

Loving Our Own Bones invites readers to claim the power and promise of spiritual dissent, and to nourish their own souls through the revolutionary art of radical self-love.

Ilana Maymind is a lecturer at the Religious Studies Department at Chapman University.

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Leontina Hormel, "Trailer Park America: Reimagining Working-Class Communities" (Rutgers UP, 2023)

Fri, 24 Nov 2023 09:00:00 -0000

In rural northern Idaho in the winter of 2013-2014, Syringa Mobile Home Park’s water system was contaminated by sewage, resulting in residents’ water being shut off for 93 days. By summer 2018 Syringa had closed, forcing residents to relocate or face homelessness.

In Trailer Park America: Reimagining Working-Class Communities (Rutgers UP, 2023), Dr. Leontina Hormel chronicles how residents dealt with regulatory agencies, frequent boil order notices, threats of closure, and class-based social stigma over this period. Despite all this, what was seen as a dysfunctional, ‘disorderly’ community by outsiders was instead a refuge where veterans, women heads of households, and people with disabilities or substance use disorders were supported and understood. The embattled Syringa community also organized to defend the rights and dignity of residents and served as a site for negotiating with local government, culminating in a class-action lawsuit that reached the federal level. The experiences Syringa residents faced in this conservative, predominately white region of the United States are emblematic of the growing national and global crisis in affordable housing and home ownership, with declining work conditions and incomes for the working-class.

Michael O. Johnston, Ph.D. is a Assistant Professor of Sociology at William Penn University. He is the author of The Social Construction of a Cultural Spectacle: Floatzilla (Lexington Books, 2023) and Community Media Representations of Place and Identity at Tug Fest: Reconstructing the Mississippi River (Lexington Books, 2022). His general area of study is about the construction of identity and place. He is currently conducting research for his next project that looks at nightlife and the emotional labor that is performed by bouncers at bars and nightclubs. To learn more about Michael O. Johnston you can go to his website, Google Scholar, Twitter @ProfessorJohnst, or by email at johnstonmo@wmpenn.edu.

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SSEAC Timor Leste Field School: Disability and Work

Thu, 23 Nov 2023 09:00:00 -0000

In the fourth of five special podcasts about from the recent SSEAC field schools to Southeast Asia, we will be hearing from students and staff from the field school to Timor Leste, which looked at disability and work. This field school was offered to students from health sciences, psychology, and social work. Leader Natali Pearson is joined by co-leader, Kim Bulkeley, and two University of Sydney students – Rosie and Alana.

The students consider many of the important aspects of their experience including: what it’s like to meet a head of state, the value of learning transdisciplinary research methods, managing cultural differences, and gaining insights into their own educational experience and culture by moving outside their usual environment.

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Meghan Henning, "Hell Hath No Fury: Gender, Disability, and the Invention of Damned Bodies in Early Christian Literature" (Yale UP, 2021)

Fri, 17 Nov 2023 09:00:00 -0000

In her book Hell Hath No Fury: Gender, Disability, and the Invention of Damned Bodies in Early Christian Literature (Yale University Press, 2021), Meghan Henning illuminates how the bodies that populate hell in early Christian literature are punished after death in spaces that mirror real carceral spaces, effectually criminalizing those bodies on Earth. Contextualizing the apocalypses alongside ancient medical texts, inscriptions, philosophy, and patristic writings, this book demonstrates the ways that Christian depictions of hell intensified and preserved ancient notions of gender and bodily normativity that continue to inform Christian identity.

Meghan R. Henning is associate professor of Christian origins at the University of Dayton.

Schneur Zalman Newfield is an Associate Professor of Sociology and Jewish Studies at Hunter College, City University of New York, and the author of Degrees of Separation: Identity Formation While Leaving Ultra-Orthodox Judaism (Temple University Press, 2020). Visit him online at ZalmanNewfield.com.

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Kay Wilson, "Mental Health Law: Abolish Or Reform?" (Oxford UP, 2021)

Sat, 11 Nov 2023 09:00:00 -0000

The debate about whether mental health law should be abolished or reformed is one that is highly charged and to which there are no easy solutions. In Mental Health Law: Abolish Or Reform? (Oxford UP, 2021), Dr Kay Wilson does not shy away from these controversial debates. Examining the work that dignity can do, she makes the case for an holistic interpretation of the Convention on the Rights of Persons with Disabilities. In thinking about mental health reform, she provides a core framework which may guide support and intervention in a way that compels respect for the dignity of the person. This book makes an important contribution to the literature. Its nuanced approach and fearlessness in delving into the hard issues should be required reading for policy makers, lawyers and mental health practitioners.

Dr Kay Wilson is a postdoctoral fellow at the convenor of The Disability Law Network at Melbourne Law School, University of Melbourne. She is also a co-editor of The Future of Mental Health, Disability and Criminal Law, (Routledge, 2023).

Jane Richards is a Lecturer in Law at York Law School, UK.

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Autism in Children's Literature: A Discussion with Jen Malia

Wed, 01 Nov 2023 08:00:00 -0000

An autistic mom of three autistic kids, Dr. Jen Malia is the author of the children’s chapter book series The Infinity Rainbow Club and the picture book Too Sticky! Sensory Issues with Autism. Jen is Professor of English and Creative Writing Coordinator at Norfolk State University. She has a Ph.D. in English from the University of Southern California. We talk about her books, and her advocacy to discuss neurodivergence in children's literature.

Mel Rosenberg is a professor emeritus of microbiology (Tel Aviv University, emeritus) who fell in love with children's books as a small child and now writes his own. He is co-founder of Ourboox, a web platform with some 240,000 ebooks that allows anyone to create and share flipbooks comprising text, pictures and videos.

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Margaret K. Nelson, "Keeping Family Secrets: Shame and Silence in Memoirs from the 1950s" (NYU Press, 2022)

Tue, 24 Oct 2023 08:00:00 -0000

All families have secrets but the facts requiring secrecy change with time. Nowadays A lesbian partnership, a “bastard” son, an aunt who is a prostitute, or a criminal grandfather might be of little or no consequence but could have unravelled a family at an earlier moment in history. In Keeping Family Secrets: Shame and Silence in Memoirs from the 1950s (NYU Press, 2023), Dr. Margaret K. Nelson is interested in how families keep secrets from each other and from outsiders when to do otherwise would risk eliciting not only embarrassment or discomfort, but profound shame and, in some cases, danger. Drawing on over 150 memoirs describing childhoods in the period between the aftermath of World War II and the 1960s, Dr. Nelson highlights the importance of history in creating family secrets and demonstrates the use of personal stories to understand how people make sense of themselves and their social worlds.

Keeping Family Secrets uncovers hidden stories of same-sex attraction among boys, unwed pregnancies among teenage girls, the institutionalisation of children with mental and physical disabilities, participation in left-wing political activities, adoption, and Jewish ancestry. The members of ordinary families kept these issues secret to hide the disconnect between the reality of their own family and the prevailing ideals of what a family should be. Personal accounts reveal the costs associated with keeping family secrets, as family members lie, hurl epithets, inflict abuse, and even deny family membership to protect themselves from the shame and danger of public knowledge. Keeping Family Secrets sheds light not only on decades-old secrets but pushes us to confront what secrets our families keep today.

This interview was conducted by Dr. Miranda Melcher whose doctoral work focused on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.

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Alexandre Baril, "Undoing Suicidism: A Trans, Queer, Crip Approach to Rethinking (Assisted) Suicide" (Temple UP, 2023)

Fri, 20 Oct 2023 08:00:00 -0000

Note: This episode contains a discussion of suicide. A list of resources is available below.

In Undoing Suicidism: A Trans, Queer, Crip Approach to Rethinking (Assisted) Suicide (Temple UP, 2023), Alexandre Baril argues that suicidal people are oppressed by what he calls structural suicidism, a hidden oppression that, until now, has been unnamed and under-theorized. Each year, suicidism and its preventionist script and strategies reproduce violence and cause additional harm and death among suicidal people through forms of criminalization, incarceration, discrimination, stigmatization, and pathologization. This is particularly true for marginalized groups experiencing multiple oppressions, including queer, trans, disabled, or Mad people.

Undoing Suicidism questions the belief that the best way to help suicidal people is through the logic of prevention. Alexandre Baril presents the thought-provoking argument that supporting assisted suicide for suicidal people could better prevent unnecessary deaths. Offering a new queercrip model of (assisted) suicide, he invites us to imagine what could happen if we started thinking about (assisted) suicide from an anti-suicidist and intersectional framework. Baril provides a radical reconceptualization of (assisted) suicide and invaluable reflections for academics, activists, practitioners, and policymakers.

An open access edition of Undoing Suicidism, made available by the Faculty of Social Sciences at the University of Ottawa, is available here.

Alexandre Baril (abaril@uOttawa.ca) is Associate Professor at the University of Ottawa. His work is situated at the crossroads of gender, queer, trans, disability/crip/Mad studies, critical gerontology and critical suicidology. His commitment to equity has earned him awards for his involvement in queer, trans and disabled communities, including the Canadian Disability Studies Association Tanis Doe Francophone Award, and the Equity, Diversity and Inclusion President’s Award at the University of Ottawa. A prolific author who won the Young Researcher Award from the Faculty of Social Sciences at the University of Ottawa (2023), he has given over 200 presentations at the international level and has over 80 publications.

Resources:

SAFE HOTLINES and ONLINE SUPPORT GROUPS:

Trans LifeLine (trans/non-binary): 1-877-330-6366 (Canada) and 1-877-565-8860 (USA)
Autisme Soutien: Online support for autistic people (French Canada)
BlackLine (BIPOC): 1-800-604-5841 (USA)

REGULAR HOTLINES (might trace your call and contact emergency services):

Talk Suicide Canada: 1-833-456-4566
Suicide.ca (Québec): 1-866-APPELLE
The Hope for Wellness Helpline (Indigenous people in Canada): 1-855-242-3310
The Samaritains (USA): 1-212-673-3000

A full transcript of the interview is available for accessibility.

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Eric B. Elbogen and Nico Verykoukis, "Violence and Mental Illness: Rethinking Risk Factors and Enhancing Public Safety" (NYU Press, 2023)

Sun, 08 Oct 2023 08:00:00 -0000

Mass shootings have become a defining issue of our time. Whenever the latest act of newsworthy violence occurs, mental illness is inevitably cited as a preeminent cause by members of the news media and political sphere alike. Eric B. Elbogen and Nico Verykoukis's book Violence and Mental Illness: Rethinking Risk Factors and Enhancing Public Safety (NYU Press, 2023) exposes how mental illness is vastly overemphasized in popular discussion of mass violence, which in turn makes us all less safe.

The recurring and intense focus on mental illness in the wake of violent tragedy is fueled by social stigma and cognitive bias, strengthening an exaggerated link between violence and mental illness. Yet as Elbogen and Verykoukis clearly and compellingly demonstrate in this book, a wide array of empirical data show that this link is much weaker than commonly believed-numerous other risk factors have been proven to be stronger predictors of violence. In particular, the authors argue that overweighting mental illness means underweighting more robust risk factors, which are external (e.g., poverty, financial strain, inadequate social support), internal (e.g., younger age, anger, substance abuse), or violence-defining (e.g., lacking empathy, gun access, hate group membership). These risk factors need to be incorporated more fully into public policies around public safety. These risk factors need to be taken into consideration when crafting policies that concern public safety, with emphasis on strategies for reducing the viability and acceptability of violence as a choice.

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Mara Mills and Rebecca Sanchez, eds., "Crip Authorship: Disability as Method" (NYU Press, 2023)

Fri, 06 Oct 2023 08:00:00 -0000

A full transcript of the interview is available for accessibility.

Mara Mills and Rebecca Sanchez's Crip Authorship: Disability as Method (NYU Press, 2023)is an expansive volume presenting the multidisciplinary methods brought into being by disability studies and activism. Mara Mills and Rebecca Sanchez have convened leading scholars, artists, and activists to explore the ways disability shapes authorship, transforming cultural production, aesthetics, and media.

Starting from the premise that disability is plural and authorship spans composition, affect, and publishing, this collection of thirty-five compact essays asks how knowledge about disability is produced and shared in disability studies. Disability alters, generates, and dismantles method. Crip authorship takes place within and beyond the commodity version of authorship, in books, on social media, and in creative works that will never be published.

The chapters draw on the expertise of international researchers and activists in the humanities, social sciences, education, arts, and design. Across five sections—Writing, Research, Genre/Form, Publishing, Media—contributors consider disability as method for creative work: practices of writing and other forms of composition; research methods and collaboration; crip aesthetics; media formats and hacks; and the capital, access, legal standing, and care networks required to publish. Designed to be accessible and engaging for students, Crip Authorship also provides theoretically sophisticated arguments in a condensed form that will make the text a key resource for disability studies scholars.

Mara Mills is Associate Professor in the Department of Media, Culture, and Communication at New York University, where she co-founded and co-directs the Center for Disability Studies.

Rebecca Sanchez is Professor of English and director of the disability studies program at Fordham University.

An open access version of Crip Authorship can be found at Open Square of NYU Press.

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Janice Rieger, "Design, Disability and Embodiment: Spatial Justice and Perspectives of Power" (Routledge, 2023)

Wed, 04 Oct 2023 08:00:00 -0000

Janice Rieger's book Design, Disability and Embodiment: Spatial Justice and Perspectives of Power (Routledge, 2023) explores the spatial and social injustices within our streets, malls, schools, and public institutions. Taken-for-granted acts like going for a walk, seeing an exhibition with a friend, and going to school are, for people with disabilities, conditional or precluded acts due to exclusion by design.

This book stimulates debate and discussion about current practice and studies in spatial design in the context of disability and the growing need for inclusive design globally. Case studies of inclusive design in spaces like museums, malls, galleries and universities are presented to challenge and expose the perspectives of power and spatial injustices that still exist within these spaces today. The international case studies presented purposely privilege the voices and perspectives of people with disabilities, to expose the multisensorial perspectives of spatial justice in order to understand inclusion more holistically through embodiment.

If you are an architect, designer, arts educator, curator or museum professional or just want a world where spatial justice is possible, then this book will provide you with a new perspective of spatial design through critical disability studies, allyship and codesign, where tangible approaches and practices for inclusive design are explored.

Shu Wan is currently matriculated as a doctoral student in history at the University at Buffalo. As a digital and disability historian, he serves in the editorial team of Digital Humanities Quarterly and Nursing Clio. On Twitter: @slissw.

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Jessica Lowell Mason and Nicole Crevar, "Madwomen in Social Justice Movements, Literatures, and Art" (Vernon Press, 2023)

Tue, 26 Sep 2023 08:00:00 -0000

Jessica Lowell Mason and Nicole Crevar's Madwomen in Social Justice Movements, Literatures, and Art (Vernon Press, 2023) boldly reasserts the importance of the Madwoman more than four decades after the publication of Sandra Gilbert and Susan Gubar's seminal work in feminist literary criticism, 'The Madwoman in the Attic'. Since Gilbert and Gubar's work was published, the Madwoman has reemerged to do important work, rock the academic boat, and ignite social justice agency inside and outside of academic spaces, moving beyond the literary context that defined the Madwoman in the late 20th century.

In this dynamic collection of essays, scholars, creative writers, and Mad activists come together to (re)define the Madwoman in pluralistic and expansive ways and to realize new potential in Mad agency. This collection blazes new directions of thinking through Madness as a gendered category, comprised of a combination of creative works that (re)imagine the figure of the Madwoman, speeches in which Mad-identifying artists and writers reclaim the label of "Madwoman," and scholarly essays that articulate ambitious theories of the Madwoman.

The collection is an interdisciplinary scholarly resource that will appeal to multiple academic fields, including literary studies, disability studies, feminist studies, and Mad studies. Additionally, the work contributes to the countermovement against colonial, sanist, patriarchal, and institutional social practices that continue to silence women and confine them to the metaphorical attic. Appealing to a broad audience of readers, 'Madwomen in Social Justice Movements, Literatures, and Art' is a cutting-edge inquiry into the implications of Madness as a theoretical tool in which dissenting, deviant, and abnormal women and gender non-conforming writers, artists, and activists open the door to Mad futurities.

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Scott Selberg, "Mediating Alzheimer's: Cognition and Personhood" (U Minnesota Press, 2022)

Thu, 21 Sep 2023 08:00:00 -0000

With no known cause or cure despite a century of research, Alzheimer's disease is a true medical mystery. In Mediating Alzheimer's: Cognition and Personhood (U Minnesota Press, 2022), Scott Selberg examines the nature of this enduring national health crisis by looking at the disease's relationship to media and representation. He shows how collective investments in different kinds of media have historically shaped how we understand, treat, and live with this disease.

Selberg demonstrates how the cognitive abilities that Alzheimer's threatens--memory, for example--are integrated into the operations of representational technologies, from Polaroid photographs to Post-its to digital artificial intelligence. Focusing on a wide variety of media technologies, such as neuroimaging, art therapy, virtual reality, and social media, he shows how these cognitively oriented media ultimately help define personhood for people with Alzheimer's. Media have changed the practices of successful aging in the United States, and Selberg takes us deep into how technologies like digital brain-training and online care networks shape ideas of cognition and healthy aging.

Packed with startlingly fresh insights, Mediating Alzheimer's contributes to debates around bioethics, the labor of caregiving, and a national economy increasingly invested in communication and digital media. Probing the very technologies that promise to save and understand our brains, it gives us new ways of understanding Alzheimer's disease and aging in America.

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Molly Ladd-Taylor, "Fixing the Poor: Eugenic Sterilization and Child Welfare in the Twentieth Century" (Johns Hopkins UP, 2020)

Wed, 20 Sep 2023 08:00:00 -0000

Between 1907 and 1937, thirty-two states legalized the sterilization of more than 63,000 Americans. In Fixing the Poor: Eugenic Sterilization and Child Welfare in the Twentieth Century (Johns Hopkins UP, 2020), Molly Ladd-Taylor tells the story of these state-run eugenic sterilization programs. She focuses on one such program in Minnesota, where surgical sterilization was legally voluntary and administered within a progressive child welfare system.

Tracing Minnesota's eugenics program from its conceptual origins in the 1880s to its official end in the 1970s, Ladd-Taylor argues that state sterilization policies reflected a wider variety of worldviews and political agendas than previously understood. She describes how, after 1920, people endorsed sterilization and its alternative, institutionalization, as the best way to aid dependent children without helping the "undeserving" poor. She also sheds new light on how the policy gained acceptance and why coerced sterilizations persisted long after eugenics lost its prestige. In Ladd-Taylor's provocative study, eugenic sterilization appears less like a deliberate effort to improve the gene pool than a complicated but sadly familiar tale of troubled families, fiscal and administrative politics, and deep-felt cultural attitudes about disability, dependency, sexuality, and gender.

Drawing on institutional and medical records, court cases, newspapers, and professional journals, Ladd-Taylor reconstructs the tragic stories of the welfare-dependent, sexually delinquent, and disabled people who were labeled "feebleminded" and targeted for sterilization. She chronicles the routine operation of Minnesota's three-step policy of eugenic commitment, institutionalization, and sterilization in the 1920s and 1930s and shows how surgery became the "price of freedom" from a state institution. Combining innovative political analysis with a compelling social history of those caught up in Minnesota's welfare system, Fixing the Poor is a powerful reinterpretation of eugenic sterilization.

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Valentina Capurri, "Not Good Enough for Canada: Canadian Public Discourse Around Issues of Inadmissibility for Potential Immigrants with Diseases And/Or Disabilities" (U Toronto Press, 2020)

Wed, 20 Sep 2023 08:00:00 -0000

Valentina Capurri's book Not Good Enough for Canada: Canadian Public Discourse Around Issues of Inadmissibility for Potential Immigrants with Diseases And/Or Disabilities (U Toronto Press, 2020) investigates the development of Canadian immigration policy with respect to persons with a disease or disability throughout the twentieth century. With an emphasis on social history, this book examines the way the state operates through legislation to achieve its goals of self-preservation even when such legislation contradicts state commitments to equality rights.

Looking at the ways federal politicians, mainstream media, and the judicial system have perceived persons with disabilities, specifically immigrant applicants with disabilities, this book reveals how Canadian immigration policy has systematically omitted any reference to this group, rendering them socially invisible.

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A Better Way to Buy Books

Tue, 12 Sep 2023 08:00:00 -0000

Bookshop.org is an online book retailer that donates more than 80% of its profits to independent bookstores. Launched in 2020, Bookshop.org has already raised more than $27,000,000. In this interview, Andy Hunter, founder and CEO discusses his journey to creating one of the most revolutionary new organizations in the book world. Bookshop has found a way to retain the convenience of online book shopping while also supporting independent bookstores that are the backbones of many local communities.

Andy Hunter is CEO and Founder of Bookshop.org. He also co-created Literary Hub.

Caleb Zakarin is the Assistant Editor of the New Books Network.

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Aleksandra Nicole Pfau, "Medieval Communities and the Mad: Narratives of Crime and Mental Illness in Late Medieval France" (Amsterdam UP, 2020)

Mon, 11 Sep 2023 08:00:00 -0000

The concept of madness as a challenge to communities lies at the core of legal sources. Aleksandra Pfau, Medieval Communities and the Mad: Narratives of Crime and Mental Illness in Late Medieval France (Amsterdam University Press, 2020) considers how communal networks, ranging from the locale to the realm, responded to people who were considered mad. The madness of individuals played a role in engaging communities with legal mechanisms and proto-national identity constructs, as petitioners sought the king’s mercy as an alternative to local justice. The resulting narratives about the mentally ill in late medieval France constructed madness as an inability to live according to communal rules. Although such texts defined madness through acts that threatened social bonds, those ties were reaffirmed through the medium of the remission letter. The composers of the letters presented madness as a communal concern, situating the mad within the household, where care could be provided. Those considered mad were usually not expelled but integrated, often through pilgrimage, surveillance, or chains, into their kin and communal relationships.

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Teresa Michals, "Lame Captains and Left-Handed Admirals: Amputee Officers in Nelson's Navy" (U Virginia Press, 2021)

Sat, 09 Sep 2023 08:00:00 -0000

The well-known Admiral Horatio Nelson fought all of his most historically significant battles after he lost his right arm and the sight in one eye. With this notable exception, however, disabled members of the military on active duty remain largely invisible.

Teresa Michals' book Lame Captains and Left-Handed Admirals: Amputee Officers in Nelson's Navy (U Virginia Press, 2021) reveals that at least twenty-four other Royal Navy officers reached the rank of Commander or higher through continued service after the loss of a limb. It focuses on the lives and careers of three particularly distinguished amputee officers: Admiral Sir Michael Seymour, Admiral Sir Watkin Owen Pell, and Admiral Sir James Alexander Gordon.

Given that the number of talented and ambitious naval officers far exceeded the number of ships the Royal Navy had to give them throughout the Revolutionary and Napoleonic Wars, we might expect that contracting any physical impairment would disqualify an officer from further command positions and promotion. Instead, it seems that losing a limb in battle could become a mark of honor, one that a successful officer and his friends could use to increase his chances of winning so-called "hero promotion" and additional employment at sea. Bringing together military disability and the social history of the Royal Navy, Teresa Michals examines how active-duty amputee officers attended to the difference between ideals of masculinity and military heroism, on the one hand, and the complex and changeable realities of military service, on the other.

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Gerald O'Brien, "Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession" (Oxford UP, 2023)

Tue, 05 Sep 2023 08:00:00 -0000

Gerald O'Brien's book Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession (Oxford UP, 2023) focuses on the conceptual relationship between the American eugenic movement of the early 1900s and contemporary genetic research, policy and practices, and their relevance for social work and related professions. While the expansion of pre-natal testing and other genetic innovations are often couched as a form of "new eugenics," this description is only partially correct. This book provides the first in-depth exploration of the relationship between the emerging social work profession and the eugenic movement during the first quarter of the twentieth century and considers the historical importance of this for the profession today.

Social workers played a particularly important role in the movement of eugenic policies from targeting persons with disabilities to limiting procreation among "welfare" recipients, especially minority women. As the profession attempts to come to terms with this problematic history, it also needs to understand the dual "faces" it displays to persons with disabilities. Often purported as supporters of such persons, social workers' continued embracement of the medical model of disabilities keeps them from being accepted by many as true allies in the fight for social justice related to disability inclusion.

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Johanna Dobrich, "Working with Survivor Siblings in Psychoanalysis: Ability and Disability in Clinical Process" (Routledge, 2021)

Tue, 05 Sep 2023 08:00:00 -0000

Johanna Dobrich, author of Working with Survivor Siblings in Psychoanalysis: Ability and Disability in Clinical Process (Routledge, 2021), is the recipient of the 2023 Sandor Ferenczi Award. The award is given for the best published work in the realm of psychoanalysis related to trauma and dissociation in adults and/or children. Survivor Siblings in Psychoanalysis: (Ability and Disability in Clinical Process is the first book to address the topic of relational trauma within the families of a child with severe disabilities.

Working with Survivor Siblings in Psychoanalysis: Ability and Disability in Clinical Process explores a previously neglected area in the field of psychoanalysis, addressing undertheorized concepts on siblings, disabilities, and psychic survivorship, and broadening our conceptualization of the enduring effects of lateral relations on human development.

What happens to a person’s sense of self both personally and professionally when they grow up alongside a severely disabled sibling? Through a series of qualitative interviews held between the author and a sample of psychoanalysts, this book examines both the unconscious experience and the interpersonal field of survivor siblings. Through a trauma-informed contemporary psychoanalytic lens, Dobrich combines data analysis, theory-building, memoir, and clinical storytelling to explore and explicate the impact of lateral survivorship on the clinical moment, making room for a contemporary and nuanced appreciation of siblings in psychoanalysis.

Working with Survivor Siblings in Psychoanalysis: Ability and Disability in Clinical Process will be of immense interest and value to psychoanalysts and other mental health professionals, and for all therapists who work with and treat patients that are themselves survivor siblings. Uniquely integrating both academic and memoir writing, this book will also engage those building theory around the implications of the analyst’s subjectivity on clinical processes.

Johanna Dobrich is a Licensed Clinical Social Worker and Psychoanalyst with a private practice in New York City that specializes in the treatment of dissociative disorders, among other conditions. Johanna has a master’s degree in political science from Rutgers University and an MSW from New York University. Johanna teaches courses in relational psychoanalysis and its intersection with traumatology and supervises post-graduate psychoanalytic candidates-in-training at the Institute for Contemporary Psychotherapy and at the Psychoanalytic Psychotherapy Study Center. Johanna enjoys writing, supervising, engaging and coming together with those who share an interest in understanding the complexities, joys and pains of human connection and expression.

Judith Tanen, MA LP CANDIDATE. Email: judithtanen@gmail.com

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Ben Mattlin, "Disability Pride: Dispatches from a Post-ADA World" (Beacon, 2022)

Sat, 02 Sep 2023 08:00:00 -0000

In Disability Pride: Dispatches from a Post-ADA World (Beacon, 2022), disabled journalist Ben Mattlin weaves together interviews and reportage to introduce a cavalcade of individuals, ideas, and events in engaging, fast-paced prose. He traces the generation that came of age after the ADA reshaped America, and how it is influencing the future. He documents how autistic self-advocacy and the neurodiversity movement upended views of those whose brains work differently. He lifts the veil on a thriving disability culture--from social media to high fashion, Hollywood to Broadway--showing how the politics of beauty for those with marginalized body types and facial features is sparking widespread change.

He also explores the movement's shortcomings, particularly the erasure of nonwhite and LGBTQIA+ people that helped give rise to Disability Justice. He delves into systemic ableism in health care, the right-to-die movement, institutionalization, and the scourge of subminimum-wage labor that some call legalized slavery. And he finds glimmers of hope in how disabled people never give up their fight for parity and fair play.

Beautifully written, without anger or pity, Disability Pride is a revealing account of an often misunderstood movement and identity, an inclusive reexamination of society's treatment of those it deems different.

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Jonathan Ablard, "Madness in Buenos Aires: Patients, Psychiatrists, and the Argentine State, 1880-1983" (Ohio UP, 2008)

Fri, 01 Sep 2023 04:00:00 -0000

Madness in Buenos Aires: Patients, Psychiatrists, and the Argentine State, 1880-1983 (Ohio UP, 2008) examines the interactions between psychiatrists, patients and their families, and the national state in modern Argentina. This book offers a fresh interpretation of the Argentine state's relationship to modernity and social change during the twentieth century, while also examining the often contentious place of psychiatry in modern Argentina.

Drawing on a number of previously untapped archival sources, author Jonathan Ablard uses the experience of psychiatric patients as a case study of how the Argentine state developed and functioned over the last century and of how Argentines interacted with it. Ablard argues that the capacity of the state to provide social services and professional opportunities and to control the populace was often constrained to an extent not previously recognized in scholarly literature. These limitations, including a shortage of hospitals, insufficient budgets, and political and economic instability, shaped the experiences of patients, their families, and doctors and also influenced medical and lay ideas about the nature and significance of mental illness. Furthermore, these experiences, and the institutional framework in which they were imbedded, had a profound impact on how Argentine psychiatrists discussed not only mental illness but also a host of related themes including immigration, poverty, and the role of the state in mitigating social problems.

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Beverley Clough and Jonathan Herring, "Disability, Care and Family Law" (Routledge, 2021)

Wed, 23 Aug 2023 08:00:00 -0000

Disability, Care and Family Law (Routledge 2021) examines the issues at the intersection of disability, care and family law. Professors Beverley Clough and Jonathan Herring challenge dominant narratives in family law, which disadvantage people with disabilities. The book enables the questioning of structural norms in policy and society which situates disability as private familial concern. It calls to the forefront marginalised voices to unveil complexities in seemingly neutral laws when applied to people with disabilities. The book engages with highly topical issues - for example, mothering a child who is in prison and is disabled, children who care for their disabled parents, deprivations of liberty of children with disabilities, and more. By bringing these complex issues together, the book moves beyond the dyad between care and disability relations in the context of family law. This is an important book for disability lawyers, family lawyers and scholars of vulnerability, care theory and relational theory. It will have significant implications for policy makers and practitioners.

Professor Beverley Clough is a Professor of Law and Social Justice at Manchester Metropolitan University. She is also the author of The Spaces of Mental Capacity Law: Moving Beyond Binaries.

Professor Jonathan Herring is the DM Wolfe-Clarendon Fellow in Law, Exeter College, University of Oxford. He is the author of several monographs, including The Right To Be Protected From Committing Suicide.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Erin Raffety, "From Inclusion to Justice: Disability, Ministry, and Congregational Leadership" (Baylor UP, 2022)

Tue, 22 Aug 2023 08:00:00 -0000

American Christianity tends to view disabled persons as problems to be solved rather than people with experiences and gifts that enrich the church. Churches have generated policies, programs, and curricula geared toward "including" disabled people while still maintaining "able-bodied" theologies, ministries, care, and leadership. Ableism―not a lack of ramps, finances, or accessible worship―is the biggest obstacle for disabled ministry in America.

In From Inclusion to Justice: Disability, Ministry, and Congregational Leadership (Baylor UP, 2022), Erin Raffety argues that what our churches need is not more programs for disabled people but rather the pastoral tools to repent of able-bodied theologies and practices, listen to people with disabilities, lament ableism and injustice, and be transformed by God’s ministry through disabled leadership. Without a paradigm shift from ministries of inclusion to ministries of justice, our practical theology falls short.

Drawing on ethnographic research with congregations and families, pastoral experience with disabled people, teaching in theological education, and parenting a disabled child, Raffety, an able-bodied Christian writing to able-bodied churches, confesses her struggle to repent from ableism in hopes of convincing others to do the same. At the same time, Raffety draws on her interactions with disabled Christian leaders to testify to what God is still doing in the pews and the pulpit, uplifting and amplifying the ministry and leadership of people with disabilities as a vision toward justice in the kingdom of God.

Bingwan Tian is a Ph.D. student at the University at Buffalo interested in the study of special education and citizenship education.

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Keith A. Mayes, "The Unteachables: Disability Rights and the Invention of Black Special Education" (U Minnesota Press, 2023)

Sun, 13 Aug 2023 08:00:00 -0000

The Unteachables: Disability Rights and the Invention of Black Special Education (U Minnesota Press, 2023) examines the overrepresentation of Black students in special education over the course of the twentieth century. As African American children integrated predominantly white schools, many were disproportionately labeled educable mentally retarded (EMR), learning disabled (LD), and emotionally behavioral disordered (EBD). Keith A. Mayes charts the evolution of disability categories and how these labels kept Black learners segregated in American classrooms.

The civil rights and the educational disability rights movements, Mayes shows, have both collaborated and worked at cross-purposes since the beginning of school desegregation. Disability rights advocates built upon the opportunity provided by the civil rights movement to make claims about student invisibility at the level of intellectual and cognitive disabilities. Although special education ostensibly included children from all racial groups, educational disability rights advocates focused on the needs of white disabled students, while school systems used disability discourses to malign and marginalize Black students.

From the 1940s to the present, social science researchers, policymakers, school administrators, and teachers have each contributed to the overrepresentation of Black students in special education. Excavating the deep-seated racism embedded in both the public school system and public policy, The Unteachables explores the discriminatory labeling of Black students, and how it indelibly contributed to special education disproportionality, to student discipline and push-out practices, and to the school-to-prison pipeline effect.

Joao Souto-Maior is a postdoc at the New York University’s Institute of Human Development and Social Change.

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Aleksandra Nicole Pfau, "Medieval Communities and the Mad: Narratives of Crime and Mental Illness in Late Medieval France" (Amsterdam UP, 2020)

Fri, 11 Aug 2023 08:00:00 -0000

The concept of madness as a challenge to communities lies at the core of legal sources. Aleksandra Nicole Pfau's book Medieval Communities and the Mad: Narratives of Crime and Mental Illness in Late Medieval France (Amsterdam UP, 2020) considers how communal networks, ranging from the locale to the realm, responded to people who were considered mad. The madness of individuals played a role in engaging communities with legal mechanisms and proto-national identity constructs, as petitioners sought the king's mercy as an alternative to local justice.

The resulting narratives about the mentally ill in late medieval France constructed madness as an inability to live according to communal rules. Although such texts defined madness through acts that threatened social bonds, those ties were reaffirmed through the medium of the remission letter. The composers of the letters presented madness as a communal concern, situating the mad within the household, where care could be provided. Those considered mad were usually not expelled but integrated, often through pilgrimage, surveillance, or chains, into their kin and communal relationships.

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Tony McCaffrey, "Giving and Taking Voice in Learning Disabled Theatre" (Routledge, 2023)

Sat, 05 Aug 2023 08:00:00 -0000

Giving and Taking Voice in Learning Disabled Theatre (Routledge, 2023) offers unique insight into the question of 'voice' in learning disabled theatre and what is gained and lost in making performance. It is grounded in the author's 18 years of making theatre with Different Light Theatre company in Christchurch, New Zealand, and includes contributions from the artists themselves.

This book draws on an extensive archive of performer interviews, recordings of rehearsal processes, and informal logs of travelling together and sharing experience. These accounts engage with the practical aesthetics of theatre-making as well as their much wider ethical and political implications, relevant to any collaborative process seeking to represent the under- or un-represented. Giving and Taking Voice in Learning Disabled Theatre asks how care and support can be tempered with artistic challenge and rigour and presents a case for how listening learning disabled artists to speech encourages attunement to indigenous knowledge and the cries of the planet in the current socio-ecological crisis.

This is a vital and valuable book for anyone interested in learning disabled theatre, either as a performer, director, dramaturg, critic, or spectator.

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Heidi Hausse, "The Malleable Body: Surgeons, Artisans, and Amputees in Early Modern Germany" (Manchester UP, 2023)

Fri, 21 Jul 2023 08:00:00 -0000

Heide Hausse's book The Malleable Body: Surgeons, Artisans, and Amputees in Early Modern Germany (Manchester University Press, 2023) uses amputation and prostheses to tell a new story about medicine and embodied knowledge-making in early modern Europe. It draws on the writings of craft surgeons and learned physicians to follow the heated debates that arose from changing practices of removing limbs, uncovering tense moments in which decisions to operate were made. Importantly, it teases out surgeons' ideas about the body embedded in their technical instructions. This unique study also explores the material culture of mechanical hands that amputees commissioned locksmiths, clockmakers, and other artisans to create, revealing their roles in developing a new prosthetic technology. Over two centuries of surgical and artisanal interventions emerged a growing perception, fundamental to biomedicine today, that humans could alter the body - that it was malleable.

Jana Byars is an independent scholar located in Amsterdam.

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Eileen V. Wallis, "California and the Politics of Disability, 1850–1970" (Palgrave Macmillan, 2023)

Wed, 28 Jun 2023 08:00:00 -0000

Eileen V. Wallis' book California and the Politics of Disability, 1850–1970 (Palgrave Macmillan, 2023) explores the political, legal, medical, and social battles that led to the widespread institutionalization of Californians with disabilities from the gold rush to the 1970s. By the early twentieth century, most American states had specialized facilities dedicated to both the care and the control of individuals with disabilities. Institutions reflect the lived historical experience of many Americans with disabilities in this era. Yet we know relatively little about how such state institutions fit into specific regional, state, or local contexts west of the Mississippi River; how those contexts shaped how institutions evolved over time; or how regional institutions fit into the USA's contentious history of care and control of Americans with mental and developmental disabilities.

This book examines how medical, social, and political arguments that individuals with disabilities needed to be institutionalized became enshrined in state law in California through the creation of a "bureaucracy of disability." Using Los Angeles County as a case study, the book also considers how the friction between state and county policy in turn influenced the treatment of individuals within such facilities. Furthermore, the book tracks how the mission and methods of such institutions evolved over time, culminating in the 1960s with the birth of the disability rights movement and the complete rewriting of California's laws on the treatment and rights of Californians with disabilities. This book is a must-read for those interested in the history of California and the American West and for anyone interested in how the intersections of disability, politics, and activism shaped our historical understanding of life for Americans with disabilities.

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Yoshiko Okuyama, "Tōjisha Manga: Japan’s Graphic Memoirs of Brain and Mental Health" (Palgrave Macmillan, 2022)

Sat, 10 Jun 2023 08:00:00 -0000

Yoshiko Okuyama's book Tōjisha Manga: Japan’s Graphic Memoirs of Brain and Mental Health (Palgrave Macmillan, 2022) defines tōjisha manga as Japan’s autobiographical comics in which the author recounts the experience of a mental or neurological condition in a unique medium of text and image. Yoshiko Okuyama argues that tōjisha manga illuminate otherwise “faceless” individuals and humanize their invisible tribulations because the first-person narrative makes their lived experience more authentic and relatable to the reader. Part I introduces the evolution of the term tōjisha, the tōjisha movements, and other relevant social phenomena and concepts. Part II analyzes five representative titles to demonstrate the humanizing power of tōjisha manga, drawing on interviews with the authors of these manga and examining how psychological or brain-related symptoms are artistically depicted in approximately 40 drawings. This book is highly recommended to not only scholars of disability studies and comic studies but also global fans of manga who are interested in the graphic memoirs of serious social issues.

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Joshua St. Pierre, "Cheap Talk: Disability and the Politics of Communication" (U MIchigan Press, 2022)

Fri, 09 Jun 2023 08:00:00 -0000

In Cheap Talk: Disability and the Politics of Communication (U Michigan Press, 2022), Joshua St. Pierre flips the script on communication disability, positioning the unruly, disabled speaker at the center of analysis to challenge the belief that more communication is unquestionably good. Working with Gilles Deleuze's suggestion that "[w]e don't suffer these days from any lack of communication, but rather from all the forces making us say things when we've nothing much to say," St. Pierre brings together the unlikely trio of the dysfluent speaker, the talking head, and the troll to show how speech is made cheap--and produced and repaired within human bodies--to meet the inhuman needs of capital. The book explores how technologies, like social media and the field of speech-language pathology, create smooth sites of contact that are exclusionary for disabled speakers and looks to the political possibilities of disabled voices to "de-face" the power of speech now entwined with capital.

Shu Wan is currently matriculated as a doctoral student in history at the University at Buffalo.

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James Kyung-Jin Lee, "Pedagogies of Woundedness: Illness, Memoir, and the Ends of the Model Minority" (Temple UP, 2021)

Thu, 08 Jun 2023 08:00:00 -0000

The pressures Asian Americans feel to be socially and economically exceptional include an unspoken mandate to always be healthy. Nowhere is this more evident than in the expectation for Asian Americans to enter the field of medicine, principally as providers of care rather than those who require care. Pedagogies of Woundedness: Illness, Memoir, and the Ends of the Model Minority (Temple UP, 2021) explores what happens when those considered model minorities critically engage with illness and medicine whether as patients or physicians.

James Kyung-Jin Lee considers how popular culture often positions Asian Americans as medical authorities and what that racial characterization means. Addressing the recent trend of writing about sickness, disability, and death, Lee shows how this investment in Asian American health via the model minority is itself a response to older racial forms that characterize Asian American bodies as diseased. Moreover, he pays attention to what happens when academics get sick and how illness becomes both methodology and an archive for scholars.

Pedagogies of Woundedness also explores the limits of biomedical “care,” the rise of physician chaplaincy, and the impact of COVID. Throughout his book and these case studies, Lee shows the social, ethical, and political consequences of these common (mis)conceptions that often define Asian Americans in regard to health and illness.

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Amanda Apgar, "The Disabled Child: Memoirs of a Normal Future" (U Michigan Press, 2023)

Tue, 06 Jun 2023 08:00:00 -0000

When children are born with disabilities or become disabled in childhood, parents often experience bewilderment: they find themselves unexpectedly in another world, without a roadmap, without community, and without narratives to make sense of their experiences.

Amanda Apgar's book The Disabled Child: Memoirs of a Normal Future (U Michigan Press, 2023) tracks the narratives that have emerged from the community of parent-memoirists who, since the 1980s, have written in resistance of their children's exclusion from culture. Though the disabilities represented in the genre are diverse, the memoirs share a number of remarkable similarities; they are generally written by white, heterosexual, middle or upper-middle class, ablebodied parents, and they depict narratives in which the disabled child overcomes barriers to a normal childhood and adulthood. Apgar demonstrates that in the process of telling these stories, which recuperate their children as productive members of society, parental memoirists write their children into dominant cultural narratives about gender, race, and class. By reinforcing and buying into these norms, Apgar argues, "special needs" parental memoirs reinforce ableism at the same time that they're writing against it.

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Philip Kirby and Margaret J. Snowling, "Dyslexia: A History" (McGill-Queen's UP, 2022)

Sat, 03 Jun 2023 08:00:00 -0000

In 1896 the British physician William Pringle Morgan published an account of “Percy,” a “bright and intelligent boy, quick at games, and in no way inferior to others of his age.” Yet, in spite of his intelligence, Percy had great difficulty learning to read. Percy was one of the first children to be described as having word-blindness, better known today as dyslexia.

In Dyslexia: A History (McGill-Queen's UP, 2022), Philip Kirby and Margaret Snowling chart a journey that begins with Victorian medicine and continues to dyslexia’s current status as the most globally recognized specific learning difficulty. In an engaging narrative style, Kirby and Snowling tell the story of dyslexia, examining its origins and revealing the many scientists, teachers, and campaigners who put it on the map. Through this history they explain current debates over the diagnosis of dyslexia and its impact on learning.For those who have lived experience of dyslexia, professionals who have supported them, and scholars of social history, education, psychology, and childhood studies, Dyslexia reflects on the place of literacy in society – whom it has benefited, and whom it has left behind.

Philip Kirby is lecturer in social science, King’s College London. Margaret J. Snowling is professor of psychology, University of Oxford, and president of St John’s College.

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Amber Knight and Joshua Miller, "Prenatal Genetic Testing, Abortion, and Disability Justice" (Oxford UP, 2023)

Thu, 01 Jun 2023 08:00:00 -0000

The routinization of non-invasive prenatal genetic testing (NIPT) raises urgent questions about disability rights and reproductive justice. Supporters defend NIPT on the grounds that genetic information about the fetus helps would-be parents make better family planning choices. Prenatal Genetic Testing, Abortion, and Disability Justice challenges that assessment by exploring how NIPT can actually constrain pregnant women's options. Prospective parents must

balance a complicated array of factors, including the familial, social, and financial support they can reasonably expect to receive if they choose to carry a disabled fetus to term and raise after birth, causing many pregnant women to “choose” termination.

Focusing on the US, the book explores the intent and effects of prenatal screening in connection to women's bodily autonomy and disability rights, addressing themes at the intersection of genetic medicine, policymaking, critical disabilities studies, and political theory. Knight and Miller shift debates about reprogenetics from bioethics to political practice, as well as thoroughly critiquing the neoliberal state and the eugenic technologies that support it. Providing concrete suggestions for reforming medical practice, welfare policy, and cultural norms surrounding disability, this book highlights sites of necessary reform to envision how prospective parents can make truly free choices about prenatal genetic testing and selection abortion.

Amber Knight, Associate Professor of Political Science and Public Administration, University of North Carolina at Charlotte. Joshua Miller, Assistant Teaching Professor of Political Science and Public Administration, University of North Carolina at Charlotte.

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Esme Cleall, "Colonising Disability: Impairment and Otherness Across Britain and Its Empire, c. 1800-1914" (Cambridge UP, 2022)

Fri, 19 May 2023 08:00:00 -0000

Colonising Disability: Impairment and Otherness Across Britain and Its Empire, c. 1800-1914 (Cambridge UP, 2022) explores the construction and treatment of disability across Britain and its empire from the nineteenth to the early twentieth century. Drawing on a wide range of sources, Esme Cleall explores how disability increasingly became associated with 'difference' and argues that it did so through intersecting with other categories of otherness such as race. Philanthropic, legal, literary, religious, medical, educational, eugenistic and parliamentary texts are examined to unpick representations of disability that, overtime, became pervasive with significant ramifications for disabled people. Cleall also uses multiple examples to show how disabled people navigated a wide range of experiences from 'freak shows' in Britain, to missions in India, to immigration systems in Australia, including exploring how they mobilised to resist discrimination and constitute their own identities. By assessing the intersection between disability and race, Dr Cleall opens up questions about 'normalcy' and the making of the imperial self.

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Meredith Broussard, "More than a Glitch: Confronting Race, Gender, and Ability Bias in Tech" (MIT Press, 2023)

Thu, 18 May 2023 08:00:00 -0000

The word "glitch" implies an incidental error, as easy to patch up as it is to identify. But what if racism, sexism, and ableism aren't just bugs in mostly functional machinery--what if they're coded into the system itself? In the vein of heavy hitters such as Safiya Umoja Noble, Cathy O'Neil, and Ruha Benjamin, Meredith Broussard demonstrates in More than a Glitch: Confronting Race, Gender, and Ability Bias in Tech (MIT Press, 2023) how neutrality in tech is a myth and why algorithms need to be held accountable.

Broussard, a data scientist and one of the few Black female researchers in artificial intelligence, masterfully synthesizes concepts from computer science and sociology. She explores a range of examples: from facial recognition technology trained only to recognize lighter skin tones, to mortgage-approval algorithms that encourage discriminatory lending, to the dangerous feedback loops that arise when medical diagnostic algorithms are trained on insufficiently diverse data. Even when such technologies are designed with good intentions, Broussard shows, fallible humans develop programs that can result in devastating consequences.

Broussard argues that the solution isn't to make omnipresent tech more inclusive, but to root out the algorithms that target certain demographics as "other" to begin with. With sweeping implications for fields ranging from jurisprudence to medicine, the ground-breaking insights of More Than a Glitch are essential reading for anyone invested in building a more equitable future.

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Andrew J. Hogan, "Disability Dialogues: Advocacy, Science, and Prestige in Postwar Clinical Professions" (Johns Hopkins UP, 2022)

Sun, 14 May 2023 08:00:00 -0000

Disability activism has fundamentally changed American society for the better--and along with it, the views and practices of many clinical professionals. After 1945, disability self-advocates and family advocates pushed for the inclusion of more positive, inclusive, and sociopolitical perspectives on disability in clinical research, training, and practice. In Disability Dialogues: Advocacy, Science, and Prestige in Postwar Clinical Professions (Johns Hopkins UP, 2022), Andrew J. Hogan highlights the contributions of disabled people--along with their family members and other allies--in changing clinical understandings and approaches to disability.

Hogan examines the evolving medical, social, and political engagement of three postwar professions--clinical psychology, pediatrics, and genetic counseling--with disability and disability-related advocacy. Professionals in these fields historically resisted adopting a more inclusive and accepting perspective on people with disabilities primarily due to concerns about professional role, identity, and prestige. In response to the work of disability activists, however, these attitudes gradually began to change.

Disability Dialogues provides an important contribution to historical, sociological, and bioethical accounts of disability and clinical professionalization. Moving beyond advocacy alone, Hogan makes the case for why present-day clinical professional fields need to better recruit and support disabled practitioners. Disabled clinicians are uniquely positioned to combine biomedical expertise with their lived experiences of disability and encourage greater tolerance for disabilities among their colleagues, students, and institutions.

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Kim E. Nielsen, "Money, Marriage, and Madness: The Life of Anna Ott" (U Illinois Press, 2020)

Sun, 14 May 2023 08:00:00 -0000

Anna Ott died in the Wisconsin State Hospital for the Insane in 1893. She had enjoyed status and financial success first as a physician's wife and then as the only female doctor in Madison. Throughout her first marriage, attempts to divorce her abusive second husband, and twenty years of institutionalization, Ott determinedly shaped her own life.

Kim E. Nielsen explores a life at once irregular and unexceptional. Historical and institutional structures, like her whiteness and laws that liberalized divorce and women's ability to control their property, opened up uncommon possibilities for Ott. Other structures, from domestic violence in the home to rampant sexism and ableism outside of it, remained a part of even affluent women's lives. Money, Marriage, and Madness: The Life of Anna Ott (U Illinois Press, 2020) tells a forgotten story of how the legal and medical cultures of the time shaped one woman--and what her life tells us about power and society in nineteenth century America.

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Stephen G. Post, "Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer's Disease" (Johns Hopkins UP, 2022)

Sun, 07 May 2023 08:00:00 -0000

How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of--and find renewed hope in--surprising expressions of selfhood despite the challenges of cognitive decline.

In Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer's Disease (Johns Hopkins University Press, 2022), Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:

- understanding the experience of dementia

- noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"

- perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers

- how to communicate optimally and use language effectively

- the value of art, poetry, symbols, personalized music, and nature in revealing self-identity

- the value of trained "dementia companion" dogs

At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.

Stephen G. Post is the director of the Center for Medical Humanities, Compassionate Care, and Bioethics at the Renaissance School of Medicine at Stony Brook University.

Caleb Zakarin is the Assistant Editor of the New Books Network.

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Paul A. Lombardo, "Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell" (Johns Hopkins UP, 2022)

Mon, 24 Apr 2023 08:00:00 -0000

“Three generations of imbeciles are enough” were the infamous words U.S. Supreme Court Justice Oliver Wendell Holmes Jr. wrote in 1927. In Buck v. Bell, an almost unanimous Court upheld a Virginia law allowing the sterilization of people the state found to be “socially inadequate” and “feebleminded.” This landmark decision allowed the eugenics movement to take full effect, with multiple states passing similar laws.

In Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell (Johns Hopkins UP, 2022), Dr. Paul Lombardo unpacks the case of an individual – Carrie Buck – to argue that the case not only represents the collective power of the eugenics movement in the early 20th century but an individual miscarriage of justice. Using extensive archival sources, Dr. Lombardo demonstrates that Carrie Buck was neither a “moral degenerate” or “feeble-minded.” She was a rape victim of sound mind. Her sterilization was based on fraudulent evidence. The powerful eugenics lobby manufactured a case – and a sympathetic court gave them a precedent that justified Carrie Buck’s sterilization – and over 60,000 sterilizations in the following decades.

Three Generations, No Imbeciles frames the history of sterilization as essential to understanding contemporary legal fights over birth control and abortion. Does the constitution’s promise of “liberty” include the right to become pregnant or end a pregnancy? Dr. Lombardo’s epilogue and afterward outlines the connections between Buck and modern cases involving abortion, disability rights, and reparations for those sterilized. Originally published in 2008, the book has been updated in 2022 with a terrific epilogue and afterward with an eye towards contemporary events in reproductive politics.

Dr. Paul A. Lombardo is Regents’ Professor and Bobby Lee Cook Professor of Law at the Center for Law, Health & Society at Georgia State University. He has published extensively on topics in health law, medico-legal history, and bioethics and is best known for his work on the legal history of the American eugenics movement. His website houses the images and all documents discussed in the podcast including the petition for rehearing created by the National Council of Catholic Men.

Daniela Campos served as the editorial assistant for this podcast.

Susan Liebell is Dirk Warren '50 Professor of Political Science at Saint Joseph’s University in Philadelphia.

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Ninon Dubourg, "Disabled Clerics in the Late Middle Ages: Un/Suitable for Divine Service?" (Amsterdam UP, 2023)

Sat, 22 Apr 2023 08:00:00 -0000

Today I talked to Ninon Dubourg about her new book Disabled Clerics in the Late Middle Ages: Un/Suitable for Divine Service? (Amsterdam UP, 2023).

The petitions received and the letters sent by the Papal Chancery during the Late Middle Ages attest to the recognition of disability at the highest levels of the medieval Church. These documents acknowledge the existence of physical and/or mental impairments, with the papacy issuing dispensations allowing some supplicants to adapt their clerical missions according to their abilities. A disease, impairment, or old age could prevent both secular and regular clerics from fulfilling the duties of their divine office. Such conditions can, thus, be understood as forms of disability.

In these cases, the Papal Chancery bore the responsibility for determining if disabled people were suitable to serve as clerics, with all the rights and duties of divine services. Whilst some petitioners were allowed to enter the clergy, or - in the case of currently serving churchmen - to stay more or less active in their work, others were compelled to resign their position and leave the clergy entirely. Petitions and papal letters lie at intersection of authorized, institutional policy and practical sources chronicling the lived experiences of disabled people in the Middle Ages. As such, they constitute an excellent analytical laboratory in which to study medieval disability in its relation to the papacy as an institution, alongside the impact of official ecclesiastical judgments on disabled lives.

A transcript of this interview is available here.

Shu Wan is currently matriculated as a doctoral student in history at the University at Buffalo. As a digital and disability historian, he serves in the editorial team of Digital Humanities Quarterly and Nursing Clio.

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Susan Burch, "Committed: Remembering Native Kinship in and Beyond Institutions" (UNC Press, 2021)

Fri, 14 Apr 2023 08:00:00 -0000

Between 1902 and 1934, the United States confined hundreds of adults and children from dozens of Native nations at the Canton Asylum for Insane Indians, a federal psychiatric hospital in South Dakota. But detention at the Indian Asylum, as families experienced it, was not the beginning or end of the story. For them, Canton Asylum was one of many places of imposed removal and confinement, including reservations, boarding schools, orphanages, and prison-hospitals. Despite the long reach of institutionalization for those forcibly held at the Asylum, the tenacity of relationships extended within and beyond institutional walls.

In Committed: Remembering Native Kinship in and Beyond Institutions (UNC Press, 2021), Susan Burch tells the story of the Indigenous people—families, communities, and nations, across generations to the present day—who have experienced the impact of this history. Drawing on oral history interviews, correspondence, material objects, and archival sources, Burch reframes the histories of institutionalized people and the places that held them. Committed expands the boundaries of Native American history, disability studies, and U.S. social and cultural history generally.

Susan Burch is a professor of American Studies. Before joining the Middlebury faculty in 2009, she taught at Gallaudet University, King’s College (University of Aberdeen, Scotland), and the Ohio State University. Professor Burch also has worked as a research associate at the Smithsonian National Museum of American History. She earned her BA degree in history and Soviet Studies from Colorado College and her MA and PhD in American and Soviet history from Georgetown University.

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Erin Raffety, "Families We Need: Disability, Abandonment, and Foster Care's Resistance in Contemporary China" (Rutgers UP, 2022)

Tue, 21 Mar 2023 08:00:00 -0000

Set in the remote, mountainous Guangxi Autonomous Region and based on ethnographic fieldwork, Families We Need: Disability, Abandonment, and Foster Care's Resistance in Contemporary China (Rutgers UP, 2022) traces the movement of three Chinese foster children, Dengrong, Pei Pei, and Meili, from the state orphanage into the humble, foster homes of Auntie Li, Auntie Ma, and Auntie Huang. Traversing the geography of Guangxi, from the modern capital Nanning where Pei Pei and Meili reside, to the small farming village several hours away where Dengrong is placed, this ethnography details the hardships of social abandonment for disabled children and disenfranchised, older women in China, while also analyzing the state’s efforts to cope with such marginal populations and incorporate them into China’s modern future. The book argues that Chinese foster families perform necessary, invisible service to the Chinese state and intercountry adoption, yet the bonds they form also resist such forces, exposing the inequalities, privilege, and ableism at the heart of global family making.

Erin Raffety is a research fellow at the Center for Theological Inquiry, an empirical research consultant at Princeton Theological Seminary, and an associate research scholar at Princeton Seminary's Institute for Youth Ministry. Raffety researches and writes on disability, congregational ministry, and church leadership and is an advocate for disabled people.

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Measure for Measure Episode 6: IQ

Tue, 07 Mar 2023 09:00:00 -0000

The Intelligence Quotient is a measure of intelligence that has life-or-death consequences. Should we trust it?

GUEST

Alan Gouddis is a Partner with Sherman & Sterling. He was recognized by The Legal 500 as a “Leading Lawyer” in M&A Litigation Defense in 2021.

This episode was produced by Andrew Middleton and Liya Rechtman.

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Mary Crossley, "Embodied Injustice: Race, Disability, and Health" (Cambridge UP, 2022)

Sun, 26 Feb 2023 09:00:00 -0000

Black people and people with disabilities in the United States are distinctively disadvantaged in their encounters with the health care system. These groups also share harsh histories of medical experimentation, eugenic sterilizations, and health care discrimination. Yet the similarities in inequities experienced by Black people and disabled people and the harms endured by people who are both Black and disabled have been largely unexplored. To fill this gap, Embodied Injustice: Race, Disability, and Health (Cambridge UP, 2022) uses an interdisciplinary approach, weaving health research with social science, critical approaches, and personal stories to portray the devastating effects of health injustice in America.

Author Mary Crossley takes stock of the sometimes-vexed relationship between racial justice and disability rights advocates and interrogates how higher disability prevalence among Black Americans reflects unjust social structures. By suggesting reforms to advance health equity for disabled people, Black people, and disabled Black people, this book lays a crucial foundation for intersectional, cross-movement advocacy to advance health justice in America.

Rachel Pagones is an acupuncturist, educator, and author based in Cambridge, England.

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Terry M. Chase, "Spoke by Spoke: How a Broken Back and a Broken Back Led to a WholeHearted Life" (Push on Press, 2021)

Sun, 26 Feb 2023 09:00:00 -0000

In this episode of Queer Voices I talk to Dr. Terry Chase about her book Spoke by Spoke: How a Broken Back and a Broken Bike Led to a WholeHearted Life, released in November 2021 by Push On Press.

Spoke by Spoke takes the reader on one woman’s journey to reinvent herself following a hit and run accident which left her back broken, and her bike crumpled by a speeding motor vehicle. The stories Terry shares will take you from the depths of despair and edges of darkness to bringing you up with her amazing spirit of perseverance and resilience. This book is not a how-to manual for facing the challenges of life but rather an inspirational guide for living a whole-hearted life no matter what hand someone is dealt.

Terry Chase, ND, MA, RN, CEIP-Ed, is dedicated to health, growth & learning. She has a deep and multi-faceted background of advanced education and hands-on experience in healthcare, education, and professional development. A professional coach and speaker offering keynotes, experiential workshops and break-out sessions in communication, team skill and education practices, as well as coaching programs to develop extraordinary leaders. To learn more visit www.DrTerryChase.com.

Morris Ardoin is the author of Stone Motel – Memoirs of a Cajun Boy (2020, University Press of Mississippi), which has been optioned for TV/film development. He also writes about medicine and health care, immigration and asylum, and higher education. He lives in New York City. His blog, “Parenthetically Speaking,” which focuses on life as a writer, cook, and a bayou boy living in New York City, can be found at www.morrisardoin.com. Instagram: morrisardoin.

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Otherness, Disability, and Beauty: A Conversation with Pulitzer finalist Chloé Cooper Jones

Tue, 31 Jan 2023 09:00:00 -0000

This episode of How To Be Wrong is about humility, beauty and the ways in which our society dictates the nature and boundaries of what is deemed beautiful. We talk with philosophy professor and Pulitzer Prize finalist Chloé Cooper Jones about desirability and the ways in which difference is constrained through our social interactions, as well as her own experience as a disabled person. We also discuss some of the ideas in her superb book, Easy Beauty: A Memoir, published by Simon & Schuster in 2022.

John Kaag is Professor and Chair of Philosophy at UMass Lowell and External Professor at the Santa Fe Institute. John W. Traphagan, Ph.D. is Professor and Mitsubishi Heavy Industries Fellow in the Department of Religious Studies at the University of Texas at Austin, where he is also a professor in the Program in Human Dimensions of Organizations.

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Elizabeth Farfán-Santos, "Undocumented Motherhood: Conversations on Love, Trauma, and Border Crossing" (U Texas Press, 2022)

Tue, 24 Jan 2023 09:00:00 -0000

Claudia Garcia crossed the border because her toddler, Natalia, could not hear. Leaving behind everything she knew in Mexico, Claudia recounts the terror of migrating alone with her toddler and the incredible challenges she faced advocating for her daughter's health in the United States. When she arrived in Texas, Claudia discovered that being undocumented would mean more than just an immigration status—it would be a way of living, of mothering, and of being discarded by even those institutions we count on to care.

Elizabeth Farfán-Santos spent five years with Claudia. As she listened to Claudia's experiences, she recalled her own mother's story, another life molded by migration, the US-Mexico border, and the quest for a healthy future on either side. Witnessing Claudia's struggles with doctors and teachers, we see how the education and medical systems enforce undocumented status and perpetuate disability. At one point, in the midst of advocating for her daughter, Claudia suddenly finds herself struck by debilitating pain. Claudia is lifted up by her comadres, sent to the doctor, and reminded why she must care for herself.

A braided narrative that speaks to the power of stories for creating connection, Undocumented Motherhood: Conversations on Love, Trauma, and Border Crossing (University of Texas Press, 2022) reveals what remains undocumented in the motherhood of Mexican women who find themselves making impossible decisions and multiple sacrifices as they build a future for their families.

Elizabeth Farfán-Santos is a medical anthropologist and the author of Black Bodies, Black Rights: The Politics of Quilombolismo in Contemporary Brazil.

Reighan Gillam is Associate Professor in the Department of Anthropology at the University of Southern California. She is the author of Visualizing Black Lives: Ownership and Control in Afro-Brazilian Media (University of Illinois Press).

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Deafness “Cures” in History

Sun, 22 Jan 2023 09:00:00 -0000

Jaipreet Virdi talks about her book Hearing Happiness: Deafness Cures in History with Peoples & Things host Lee Vinsel. The book details the long history of attempts to “fix” deaf people, including a great deal of quackery. Towards the end of the conversation, Virdi and Vinsel also talk about what a world beyond solutionist fantasies that disability can be “cured” would look like.

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Sarah Imhoff, "The Lives of Jessie Sampter: Queer, Disabled, Zionist" (Duke UP, 2022)

Wed, 11 Jan 2023 09:00:00 -0000

In The Lives of Jessie Sampter: Queer, Disabled, Zionist (Duke UP, 2022), Sarah Imhoff tells the story of an individual full of contradictions. Jessie Sampter (1883-1938) was best known for her Course in Zionism (1915), an American primer for understanding support of a Jewish state in Palestine. In 1919, Sampter packed a trousseau, declared herself "married to Palestine," and immigrated there. Yet Sampter's own life and body hardly matched typical Zionist ideals. Although she identified with Judaism, Sampter took up and experimented with spiritual practices from various religions. While Zionism celebrated the strong and healthy body, she spoke of herself as "crippled" from polio and plagued by sickness her whole life. While Zionism applauded reproductive women's bodies, Sampter never married or bore children; in fact, she wrote of homoerotic longings and had same-sex relationships. By charting how Sampter's life did not neatly line up with her own religious and political ideals, Imhoff highlights the complicated and at times conflicting connections between the body, queerness, disability, religion, and nationalism.

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"Medical Assistance in Dying" (MAID) in Canada

Mon, 26 Dec 2022 09:00:00 -0000

Is medical assistance in dying, or MAID letting the government off the hook from providing what they should be providing? Should we respect people's choices on harm reduction grounds, even if those choices are severely constrained by an unjust social and political context? Should we give doctors this power over the mentally ill and disabled, given the racist and ableist nature of our crumbling health care system?

Gordon Katic debates this and more, with perspectives from either side. Professor Trudo Lemmens argues that MAID sends a disturbing message: disabled lives aren't worth living. Next, Dr. Derryk Smith (formerly of Dying with Dignity) says just the opposite: excluding certain people from this civil liberty is tantamount to stigmatization.

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Beverley Clough, "The Spaces of Mental Capacity Law: Moving Beyond Binaries" (Routledge, 2021)

Sat, 03 Dec 2022 09:00:00 -0000

This book cuts new ground, challenging the assumption of law as an objective concept. It draws out the way that binary frameworks situate and create the notion of the individual in law, delininating responsibilities and rights between concepts such as the state / individual, public / private, care / disability and capacity / incapacity. In The Spaces of Mental Capacity Law: Moving Beyond Binaries (Routledge, 2022) Dr. Beverley Clough draws into question spatial dynamics of law and disability. While she does so through the lens of analysis of the Mental Capacity Act 2005, this liminal work will be cause for broader application in all areas of law which function on "common-sense" understandings of autonomy and law. It will be useful for lawyers, policy makers, practitioners, and any person who wishes to understand the law and the way that it constructs subjectivity.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Wei Yu Wayne Tan, "Blind in Early Modern Japan: Disability, Medicine, and Identity" (U Michigan Press, 2022)

Tue, 29 Nov 2022 09:00:00 -0000

While the loss of sight—whether in early modern Japan or now—may be understood as a disability, blind people in the Tokugawa period (1600–1868) could thrive because of disability. The blind of the era were prominent across a wide range of professions, and through a strong guild structure were able to exert contractual monopolies over certain trades. Blind in Early Modern Japan: Disability, Medicine, and Identity (U Michigan Press, 2022) illustrates the breadth and depth of those occupations, the power and respect that accrued to the guild members, and the lasting legacy of the Tokugawa guilds into the current moment.

The book illustrates why disability must be assessed within a particular society’s social, political, and medical context, and also the importance of bringing medical history into conversation with cultural history. A Euro-American-centric disability studies perspective that focuses on disability and oppression, the author contends, risks overlooking the unique situation in a non-Western society like Japan in which disability was constructed to enhance blind people’s power. He explores what it meant to be blind in Japan at that time, and what it says about current frameworks for understanding disability.

Glossary of foreign words/names:

Zatōichi (a blind fictional hero)
Kyokutei Bakin (a writer/author)
Heike (a genre)
Biwa (a musical instrument)
Koto< (a musical instrument)
Shamisen (a musical instrument)
Ogino Chiichi (a blind musician)

Jingyi Li is a PhD Candidate in Japanese History at the University of Arizona. She researches about early modern Japan, literati, and commercial publishing.

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J. Logan Smilges, "Queer Silence: On Disability and Rhetorical Absence" (U Minnesota Press, 2022)

Thu, 24 Nov 2022 09:00:00 -0000

In queer culture, silence has been equated with voicelessness, complicity, and even death. Queer Silence: On Disability and Rhetorical Absence (U Minnesota Press, 2022) insists, however, that silence can be a generative and empowering mode of survival. Triangulating insights from queer studies, disability studies, and rhetorical studies, J. Logan Smilges explores what silence can mean for people whose bodyminds signify more powerfully than their words.

Queer Silence begins by historicizing silence’s negative reputation, beginning with the ways homophile activists rejected medical models pathologizing homosexuality as a disability, resulting in the silencing of disability itself. This silencing was redoubled by HIV/AIDS activism’s demand for “out, loud, and proud” rhetorical activities that saw silence as capitulation.

Reading a range of cultural artifacts whose relative silence has failed to attract queer attachment, from anonymous profiles on Grindr to ex-gays to belated gender transitions to disability performance art, Dr. Smilges argues for silence’s critical role in serving the needs of queers who are never named as such. Queer Silence urges queer activists and queer studies scholars to reconcile with their own ableism by acknowledging the liberatory potential of silence, a mode of engagement that disattached queers use every day for resistance, sociality, and survival.

J. Logan Smilges is Assistant Professor of English Language and Literatures at the University of British Columbia.

Sohini Chatterjee is a PhD Candidate in Gender, Sexuality, and Women's Studies at Western University, Canada. Her work has recently appeared in Women's Studies: An inter-disciplinary journal, South Asian Popular Culture and Fat Studies.

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Sarah Dauncey, "Disability in Contemporary China: Citizenship, Identity and Culture" (Cambridge UP, 2022)

Fri, 18 Nov 2022 09:00:00 -0000

In Disability in Contemporary China: Citizenship, Identity and Culture (Cambridge UP, 2022), Sarah Dauncey offers the first comprehensive exploration of disability and citizenship in Chinese society and culture from 1949 to the present. Through the analysis of a wide variety of Chinese sources, from film and documentary to literature and life writing, media and state documents, she sheds important new light on the ways in which disability and disabled identities have been represented and negotiated over this time. She exposes the standards against which disabled people have been held as the Chinese state has grappled with expectations of what makes the 'ideal' Chinese citizen. From this, she proposes an exciting new theoretical framework for understanding disabled citizenship in different societies - 'para-citizenship'. A far more dynamic relationship of identity and belonging than previously imagined, her new reading synthesises the often troubling contradictions of citizenship for disabled people - the perils of bodily and mental difference and the potential for personal and group empowerment.

Professor Sarah Dauncey is a China specialist with 30 years' experience in visiting and studying China. She joined the School of Sociology and Social Policy in 2016 at the University of Nottingham, having previously served as Deputy Head and Director of Teaching at the School of Contemporary Chinese Studies.

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Mary Dunn, "Where Paralytics Walk and the Blind See: Stories of Sickness and Disability at the Juncture of Worlds" (Princeton UP, 2022)

Thu, 17 Nov 2022 09:00:00 -0000

In our age of biomedicine, society often treats sickness and disability as problems in need of solution. Phenomena of embodied difference, however, have not always been seen in terms of lack and loss. Where Paralytics Walk and the Blind See: Stories of Sickness and Disability at the Juncture of Worlds (Princeton UP, 2022) explores the case of early modern Catholic Canada under French rule and shows it to be a period rich with alternative understandings of infirmity, disease, and death. Counternarratives to our contemporary assumptions, these early modern stories invite us to creatively imagine ways of living meaningfully with embodied difference today.

At the heart of Dunn's account are a range of historical sources: Jesuit stories of illness in New France, an account of Canada's first hospital, the hagiographic vita of Catherine de Saint-Augustin, and tales of miraculous healings wrought by a dead Franciscan friar. In an early modern world that subscribed to a Christian view of salvation, both sickness and disability held significance for more than the body, opening opportunities for virtue, charity, and even redemption. Dunn demonstrates that when these reflections collide with modern thinking, the effect is a certain kind of freedom to reimagine what sickness and disability might mean to us.

Reminding us that the meanings we make of embodied difference are historically conditioned, Where Paralytics Walk and the Blind See makes a forceful case for the role of history in broadening our imagination.

Brenna Moore teaches in the Department of Theology at Fordham University and works in the areas of Catholic Intellectual History, particularly in modern Europe.

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Therí Alyce Pickens, "Black Madness :: Mad Blackness" (Duke UP, 2019)

Mon, 14 Nov 2022 09:00:00 -0000

In Black Madness :: Mad Blackness (Duke UP, 2019), Therí Alyce Pickens rethinks the relationship between Blackness and disability, unsettling the common theorization that they are mutually constitutive. Pickens shows how Black speculative and science fiction authors such as Octavia Butler, Nalo Hopkinson, and Tananarive Due craft new worlds that reimagine the intersection of Blackness and madness. These creative writer-theorists formulate new parameters for thinking through Blackness and madness. Pickens considers Butler's Fledgling as an archive of Black madness that demonstrates how race and ability shape subjectivity while constructing the building blocks for antiracist and anti-ableist futures. She examines how Hopkinson's Midnight Robber theorizes mad Blackness and how Due's African Immortals series contests dominant definitions of the human. The theorizations of race and disability that emerge from these works, Pickens demonstrates, challenge the paradigms of subjectivity that white supremacy and ableism enforce, thereby pointing to the potential for new forms of radical politics.

Clayton Jarrard is a Research Project Coordinator at the University of Kansas Center for Research, contributing to initiatives that bridge research, policy, and community efforts. His scholarly engagement spans the subject areas of Cultural Anthropology, Queer Studies, Disability Studies, Mad Studies, and Religious Studies.

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Elizabeth Drame et al., "The Resistance, Persistence and Resilience of Black Families Raising Children with Autism" (Peter Lang, 2020)

Tue, 01 Nov 2022 08:00:00 -0000

The Resistance, Persistence and Resilience of Black Families Raising Children with Autism (Peter Lang, 2020) presents nuanced perspectives in the form of counternarratives of what Black families who have children with autism experience at the intersection of race, class, disability and gender. It intentionally centers the expertise of Black parents, challenging what is considered knowledge, whose knowledge counts, and how knowledge can be co-generated for learning, sharing and advocacy. The book speaks directly to Black parents on the autism journey.

To right systemic racial inequities and to cultivate culturally responsive practices, it is critical for practitioners and professionals to understand what is known about Black families' experiences with autism in general and how these experiences differ because of our intersecting identities. University faculty and students in programs involving medicine, speech and language pathology, occupational therapy, nursing, political science, school psychology, teaching, special education and leadership can benefit from the wisdom offered by these parents. This text is perfect for several courses, including those in departments of anthropology, women and gender studies, health sciences, psychology, special education, teacher education and administrative leadership. In addition, given the uniquely Black perspective presented in the text, this text is relevant to other fields, including ethnic studies, cultural studies, urban studies and African American studies. It is relevant to individuals who wish to better understand how issues of race and intra-racial differences shape lived experiences with disability in American society.

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Yoshiko Okuyama, "Reframing Disability in Manga" (U Hawaii Press, 2020)

Mon, 24 Oct 2022 08:00:00 -0000

Reframing Disability in Manga (University of Hawaii Press, 2020) analyzes popular Japanese manga published from the 1990s to the present that portray the everyday lives of adults and children with disabilities in an ableist society. It focuses on five representative conditions currently classified as shōgai (disabilities) in Japan―deafness, blindness, paraplegia, autism, and gender identity disorder―and explores the complexities and sociocultural issues surrounding each. Author Yoshiko Okuyama begins by looking at preindustrial understandings of difference in Japanese myths and legends before moving on to an overview of contemporary representations of disability in popular culture, uncovering socio-historical attitudes toward the physically, neurologically, or intellectually marked Other. She critiques how characters with disabilities have been represented in mass media, which has reinforced ableism in society and negatively influenced our understanding of human diversity in the past.

Okuyama then presents fifteen case studies, each centered on a manga or manga series, that showcase how careful depictions of such characters as differently abled, rather than disabled or impaired, can influence cultural constructions of shōgai and promote social change. Informed by numerous interviews with manga authors and disability activists, Okuyama reveals positive messages of diversity embedded in manga and argues that greater awareness of disability in Japan in the last two decades is due in part to the popularity of these works, the accessibility of the medium, and the authentic stories they tell.

Scholars and students in disability studies will find this book an invaluable resource as well as those with interests in Japanese cultural and media studies in general and manga and queer narrative and anti-normative discourse in Japan in particular.

Yoshiko Okuyama is Professor of Japanese studies at the University of Hawai’i at Hilo, USA. Her recent publications include Japanese Mythology in Film: A Semiotic Approach to Reading Japanese Film and Anime (2015) and Reframing Disability in Manga (2020).

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Lucy Series, "Deprivation of Liberty in the Shadows of the Institution" (Bristol UP, 2022)

Mon, 24 Oct 2022 08:00:00 -0000

Dr Lucy Series Deprivations of Liberty in The Shadows of the Institution (Bristol University Press, 2022) is one that I have long been looking forward to reading, and it did not disappoint. Series provides a rich historical and socio-legal context to bring new understanding of the post-carceral era, and the legacies of the institutions which continue to shape the contemporary era of social care detention. She provides an in-depth analysis of the very odd legal landscape that has been imported into the British care system, to draw out the specific logics, locus and temporality of a complex social problem, for which the legal solution has produced anomalous results. Her key concern goes beyond bringing new understanding of the ways that individuals are regulated and controlled. Crucially, Series delves into what we should be aiming for.

Dr Lucy Series is a lecturer in the school for policy studies at the University of Bristol. She also writes a fabulous blog, The Small Places.

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Elsa Sjunneson, "Being Seen: One Deafblind Woman's Fight to End Ableism" (Simon Element, 2021)

Thu, 20 Oct 2022 08:00:00 -0000

As a deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness--much to the confusion of the world around her. While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they're whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be.

As a media studies professor, she's also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the Deafblind experience, Being Seen: One Deafblind Woman's Fight to End Ableism (Simon Element, 2021) explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.

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Sami Schalk, "Black Disability Politics" (Duke UP, 2022)

Wed, 12 Oct 2022 08:00:00 -0000

In Black Disability Politics (Duke UP, 2022) Sami Schalk explores how issues of disability have been and continue to be central to Black activism from the 1970s to the present. Dr. Schalk shows how Black people have long engaged with disability as a political issue deeply tied to race and racism. She points out that this work has not been recognized as part of the legacy of disability justice and liberation because Black disability politics differ in language and approach from the mainstream white-dominant disability rights movement. Drawing on the archives of the Black Panther Party and the National Black Women’s Health Project alongside interviews with contemporary Black disabled cultural workers, Dr. Schalk identifies common qualities of Black disability politics, including the need to ground public health initiatives in the experience and expertise of marginalized disabled people so that they can work in antiracist, feminist, and anti-ableist ways. Prioritizing an understanding of disability within the context of white supremacy, Dr. Schalk demonstrates that the work of Black disability politics not only exists but is essential to the future of Black liberation movements.

Dr. Sami Schalk is Associate Professor of Gender and Women’s Studies at the University of Wisconsin-Madison and is the author of Bodymind Reimagined: Disability, Race, Gender in Black Women’s Speculative Fiction (Duke University Press, 2018).

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Merrick Daniel Pilling, "Queer and Trans Madness: Struggles for Social Justice" (Palgrave Macmillan, 2022)

Thu, 29 Sep 2022 08:00:00 -0000

In Queer and Trans Madness: Struggles for Social Justice (Palgrave Macmillan), Merrick D. Pilling urges those invested in social justice for 2SLGBTQ people to interrogate the biomedical model of mental illness beyond the diagnoses that specifically target gender and sexual dissidence. In this first comprehensive application of Mad Studies to queer and trans experiences of mental distress, Pilling advances a broad critique of the biomedical model of mental illness as it pertains to 2SLGBTQ people, arguing that Mad Studies is especially amenable to making sense of queer and trans madness. Based on empirical data from two qualitative research studies, this book includes analyses of inpatient chart documentation from a psychiatric hospital and interviews with those who have experienced distress. Using an intersectional lens, Pilling critically examines what constitutes mental health treatment and the impacts of medical strategies on mad queer and trans people.

Ultimately, Queer and Trans Madness: Struggles for Social Justice explores the emancipatory promise of queer and trans madness, advocating for more resources to respond to crisis and distress in ways that are non-coercive, non-carceral, and honour autonomy as well as interdependence within 2SLGBTQ communities.

Clayton Jarrard works at the University of Kansas Center for Research, contributing to initiatives that bridge research, policy, and community efforts. His scholarly engagement spans the subject areas of cultural anthropology, queer studies, disability studies, mad studies, and religious studies.

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Shani Orgad and Rosalind Gill, "Confidence Culture" (Duke UP, 2022)

Tue, 27 Sep 2022 21:04:00 -0000

In Confidence Culture (Duke UP, 2022), Shani Orgad and Rosalind Gill argue that imperatives directed at women to “love your body” and “believe in yourself” imply that psychological blocks rather than entrenched social injustices hold women back. Interrogating the prominence of confidence in contemporary discourse about body image, workplace, relationships, motherhood, and international development, Orgad and Gill draw on Foucault’s notion of technologies of self to demonstrate how “confidence culture” demands of women near-constant introspection and vigilance in the service of self-improvement. They argue that while confidence messaging may feel good, it does not address structural and systemic oppression. Rather, confidence culture suggests that women—along with people of color, the disabled, and other marginalized groups—are responsible for their own conditions. Rejecting confidence culture’s remaking of feminism along individualistic and neoliberal lines, Orgad and Gill explore alternative articulations of feminism that go beyond the confidence imperative.

Louisa Hann recently attained a PhD in English and American studies from the University of Manchester, specialising in the political economy of HIV/AIDS theatres. She has published work on the memorialisation of HIV/AIDS on the contemporary stage and the use of documentary theatre as a neoliberal harm reduction tool. She is currently working on a monograph based on her doctoral thesis. You can get in touch with her at louisahann92@gmail.com.

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Bruce J. Dierenfield and David A. Gerber, "Disability Rights and Religious Liberty in Education: The Story Behind Zobrest V. Catalina Foothills School District" (U Illinois Press, 2020)

Wed, 14 Sep 2022 08:00:00 -0000

In 1988, Sandi and Larry Zobrest sued a suburban Tucson, Arizona, school district that had denied their hearing-impaired son a taxpayer-funded interpreter in his Roman Catholic high school. The Catalina Foothills School District argued that providing a public resource for a private, religious school created an unlawful crossover between church and state. The Zobrests, however, claimed that the district had infringed on both their First Amendment right to freedom of religion and the Individuals with Disabilities Education Act (IDEA).

In Disability Rights and Religious Liberty in Education: The Story Behind Zobrest V. Catalina Foothills School District (U Illinois Press, 2020), Bruce J. Dierenfield and David A. Gerber use the Zobrests' story to examine the complex history and jurisprudence of disability accommodation and educational mainstreaming. They look at the family's effort to acquire educational resources for their son starting in early childhood and the choices the Zobrests made to prepare him for life in the hearing world rather than the deaf community. Dierenfield and Gerber also analyze the thorny church-state issues and legal controversies that informed the case, its journey to the U.S. Supreme Court, and the impact of the high court's ruling on the course of disability accommodation and religious liberty.

David A. Gerber taught American History at the University at Buffalo (SUNY) from 1971 to his retirement in 2012. He was founding Director of the Center for Disability Studies at UB, and served in that capacity from 2009 through 2012. His interests in History have been grown over the course of years to encompass manifestations of personal and social identity in a wide variety of groups and individuals including during the course of his career: African Americans; American Jews; American Catholics; European immigrants, and people with disabilities.

Bruce Dierenfield has long been interested in the history of American race relations, and has written a popular textbook on the civil rights movement and another on African-American leadership since enslavement. As Peter Canisius Distinguished Teaching Professor, Dierenfield organized the “African-American Experience,” led student trips to West Africa and the Deep South, and invited distinguished historians and many influential activists of the 1960s to speak on campus

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Joel Michael Reynolds, "The Life Worth Living: Disability, Pain, and Morality" (U Minnesota Press, 2022)

Fri, 09 Sep 2022 08:00:00 -0000

The Life Worth Living: Disability, Pain, and Morality (U Minnesota Press, 2022) investigates the exclusion of and discrimination against disabled people across the history of Western moral philosophy. Building on decades of activism and scholarship, Joel Michael Reynolds shows how longstanding views of disability are misguided and unjust, and he lays out a vision of what an anti-ableist moral future requires.

More than 2,000 years ago, Aristotle said: "let there be a law that no deformed child shall live." This idea is alive and well today. During the past century, Supreme Court Justice Oliver Wendell Holmes Jr. argued that the United States can forcibly sterilize intellectually disabled women and philosopher Peter Singer argued for the right of parents to euthanize certain cognitively disabled infants. The Life Worth Living explores how and why such arguments persist by investigating the exclusion of and discrimination against disabled people across the history of Western moral philosophy.

Joel Michael Reynolds argues that this history demonstrates a fundamental mischaracterization of the meaning of disability, thanks to the conflation of lived experiences of disability with those of pain and suffering. Building on decades of activism and scholarship in the field, Reynolds shows how longstanding views of disability are misguided and unjust, and he lays out a vision of what an anti-ableist moral future requires.

The Life Worth Living is the first sustained examination of disability through the lens of the history of moral philosophy and phenomenology, and it demonstrates how lived experiences of disability demand a far richer account of human flourishing, embodiment, community, and politics in philosophical inquiry and beyond.

Joel Michael Reynolds is an Assistant Professor of Philosophy and Disability Studies at Georgetown University, Senior Research Scholar in the Kennedy Institute of Ethics, Senior Bioethics Advisor to The Hastings Center, Faculty Scholar of The Greenwall Foundation, and core faculty in Georgetown’s Disability Studies Program. He is the founder of The Journal of Philosophy of Disability and co-founder of Oxford Studies in Disability, Ethics, and Society from Oxford University Press.

Dr. Reynolds’ work explores the relationship between bodies, values, and society. He is especially concerned with the meaning of disability, the issue of ableism, and how philosophical inquiry into each might improve the lives of people with disabilities and the justness of institutions ranging from medicine to politics. These concerns lead to research across a range of traditions and specialties, including philosophy of disability, applied ethics (especially biomedical ethics, public health ethics, tech/data ethics, and ELSI research in genomics), 20th c. European and American philosophy (with an emphasis on phenomenology and pragmatism as practiced in connection with the history of philosophy), and social epistemology (particularly issues of epistemic injustice as linked to social ontology).

Autumn Wilke works in higher education as an ADA coordinator and diversity officer and is also an author and doctoral candidate with research/topics related to disability and higher education.

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Christopher Krentz, "Elusive Kinship: Disability and Human Rights in Postcolonial Literature" (Temple UP, 2022)

Fri, 05 Aug 2022 08:00:00 -0000

Dr. Christopher Krentz is an Associate Professor at the University of Virginia, where he has a joint appointment with the departments of English and American Sign Language. He is also the author of Writing Deafness: The Hearing Line in Nineteenth-Century American Literature and editor of A Mighty Change: An Anthology of Deaf American Writing, 1816–1864, as well as numerous articles about disability in literature and culture. He is currently director of the University of Virginia’s Disability Studies Initiative and helped found their American Sign Language Program.

Characters with disabilities are often overlooked in fiction, but many occupy central places in literature by celebrated authors like Chinua Achebe, Salman Rushdie, J. M. Coetzee, Anita Desai, Jhumpa Lahiri, Edwidge Danticat, and others. These authors deploy disability to do important cultural work, writes Christopher Krentz in his innovative study, Elusive Kinship: Disability and Human Rights in Postcolonial Literature (Temple UP, 2022). Such representations not only relate to the millions of disabled people in the Global South, but also make more vivid such issues as the effects of colonialism, global capitalism, racism and sexism, war, and environmental disaster.

Krentz is the first to put the fields of postcolonial studies, studies of human rights and literature, and literary disability in conversation with each other in a book-length study. He enhances our appreciation of key texts of Anglophone postcolonial literature of the Global South, including Things Fall Apart and Midnight’s Children. In addition, he uncovers the myriad ways fiction gains energy, vitality, and metaphoric force from characters with extraordinary bodies or minds.

Depicting injustices faced by characters with disabilities is vital to raising awareness and achieving human rights. Elusive Kinship nudges us toward a fuller understanding of disability worldwide.

Autumn Wilke works in higher education as an ADA coordinator and diversity officer and is also an author and doctoral candidate with research/topics related to disability and higher education.

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Alison Macor, "Making The Best Years of Our Lives: The Hollywood Classic That Inspired a Nation" (U Texas Press, 2022)

Fri, 08 Jul 2022 08:00:00 -0000

Released in 1946, The Best Years of Our Lives became an immediate success. Life magazine called it “the first big, good movie of the post-war era” to tackle the “veterans problem.” Today we call that problem PTSD, but in the initial aftermath of World War II, the modern language of war trauma did not exist. The film earned the producer Samuel Goldwyn his only Best Picture Academy Award. It offered the injured director, William Wyler, a triumphant postwar return to Hollywood. And for Harold Russell, a double amputee who costarred with Fredric March and Dana Andrews, the film provided a surprising second act. Award-winning author Alison Macor illuminates the film’s journey from script to screen and describes how this authentic motion picture moved audiences worldwide. General Omar Bradley believed The Best Years of Our Lives would help “the American people to build an even better democracy” following the war, and the movie inspired broad reflection on reintegrating the walking wounded. But the film’s nuanced critique of American ideals also made it a target, and the picture and its creators were swept up in the anti-Communist witch hunts of the late 1940s. In Making The Best Years of Our Lives: The Hollywood Classic That Inspired a Nation (U Texas Press, 2022), Macor chronicles the making and meaning of a film that changed America.

Joel Tscherne is an Adjunct History Professor at Southern New Hampshire University. His Twitter handle is @JoelTscherne.

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Marga Vicedo, "Intelligent Love: The Story of Clara Park, Her Autistic Daughter, and the Myth of the Refrigerator Mother" (Beacon Press, 2021)

Fri, 17 Jun 2022 08:00:00 -0000

In the early 1960s, Massachusetts writer and homemaker Clara Park and her husband took their 3-year-old daughter, Jessy, to a specialist after noticing that she avoided connection with others. Following the conventional wisdom of the time, the psychiatrist diagnosed Jessy with autism and blamed Clara for Jessy's isolation. Experts claimed Clara was the prototypical "refrigerator mother," a cold, intellectual parent who starved her children of the natural affection they needed to develop properly.

Refusing to accept this, Clara decided to document her daughter's behaviors and the family's engagement with her. In 1967, she published her groundbreaking memoir challenging the refrigerator mother theory and carefully documenting Jessy's development. Clara's insights and advocacy encouraged other parents to seek education and support for their autistic children. Meanwhile, Jessy would work hard to expand her mother's world, and ours.

Drawing on previously unexamined archival sources and firsthand interviews, science historian Marga Vicedo illuminates the story of how Clara Park and other parents fought against medical and popular attitudes toward autism while presenting a rich account of major scientific developments in the history of autism in the US. Intelligent Love: The Story of Clara Park, Her Autistic Daughter, and the Myth of the Refrigerator Mother (Beacon Press, 2021) is a fierce defense of a mother's right to love intelligently, the value of parents' firsthand knowledge about their children, and an individual's right to be valued by society.

Galina Limorenko is a doctoral candidate in Neuroscience with a focus on biochemistry and molecular biology of neurodegenerative diseases at EPFL in Switzerland.

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Jennifer Natalya Fink, "All Our Families: Disability Lineage and the Future of Kinship" (Beacon Press, 2022)

Thu, 16 Jun 2022 08:00:00 -0000

Disability is often described as a tragedy, a crisis, or an aberration, though 1 in 5 people worldwide have a disability. Why is this common human experience rendered exceptional? In All Our Families: Disability Lineage and the Future of Kinship (Beacon Press, 2022), disability studies scholar Jennifer Natalya Fink argues that this originates in our families. When we cut a disabled member out of the family story, disability remains a trauma as opposed to a shared and ordinary experience. This makes disability and its diagnosis traumatic and exceptional.

Weaving together stories of members of her own family with sociohistorical research, Fink illustrates how the eradication of disabled people from family narratives is rooted in racist, misogynistic, and antisemitic sorting systems inherited from Nazis. By examining the rhetoric of genetic testing, she shows that a fear of disability begins before a child is even born and that a fear of disability is, fundamentally, a fear of care. Fink analyzes our racist and sexist care systems, exposing their inequities as a source of stigmatizing ableism.

Inspired by queer and critical race theory, Fink calls for a lineage of disability a reclamation of disability as a history, a culture, and an identity. Such a lineage offers a means of seeing disability in the context of a collective sense of belonging, as cause for celebration, and is a call for a radical reimagining of carework and kinship. All Our Families challenges us to re-lineate disability within the family as a means of repair toward a more inclusive and flexible structure of care and community.

Galina Limorenko is a doctoral candidate in Neuroscience with a focus on biochemistry and molecular biology of neurodegenerative diseases at EPFL in Switzerland.

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Danya Glabau, "Food Allergy Advocacy: Parenting and the Politics of Care" (U Minnesota Press, 2022)

Fri, 10 Jun 2022 08:00:00 -0000

A detailed exploration of parents' fight for a safe environment for their kids, interrogating how race, class, and gender shape health advocacy The success of food allergy activism in highlighting the dangers of foodborne allergens shows how illness communities can effectively advocate for the needs of their members.

In Food Allergy Advocacy: Parenting and the Politics of Care (U Minnesota Press, 2022), Danya Glabau follows parents and activists as they fight for allergen-free environments, accurate labeling, the fair application of disability law, and access to life-saving medications for food-allergic children in the United States. At the same time, she shows how this activism also reproduces the culturally dominant politics of personhood and responsibility, based on an idealized version of the American family, centered around white, middle-class, and heteronormative motherhood. By holding up the threat of food allergens to the white nuclear family to galvanize political and scientific action, Glabau shows, the movement excludes many, including Black women and disabled adults, whose families and health have too often been marginalized from public health and social safety net programs. Further, its strategies are founded on the assumption that market-based solutions will address issues of social exclusion and equal access to healthcare. Sharing the personal experiences of a wide spectrum of people, including parents, support group leaders, physicians, entrepreneurs, and scientists, Food Allergy Advocacy raises important questions about who controls illness activism. Using critical, intersectional feminism to interrogate how race, class, and gender shape activist priorities and platforms, it shows the way to new, justice-focused models of advocacy.

Danya Glabau is a medical anthropologist and science and technology studies scholar who researches patient activism, the political economy of the global pharmaceutical industry, and feminist cybercultures. She is a faculty member at the NYU Tandon School of Engineering and the Director of the Science and Technology Studies Program.

Autumn Wilke works in higher education as an ADA coordinator and diversity officer and am also an author and doctoral candidate with research/topics related to disability and higher education.

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Jonathan Sterne, "Diminished Faculties: A Political Phenomenology of Impairment" (Duke UP, 2022)

Tue, 17 May 2022 08:00:00 -0000

Diminished Faculties: A Political Phenomenology of Impairment (Duke UP, 2022) begins by calling into question a fundamental principle of orthodox phenomenology (and, for that matter, a great deal of humanities research): that of a fully self-aware unchanging subject who can provide a coherent account of its own experience, one which is commensurable and legible to others. Having foregrounded that instead ‘living means changing’, and that ‘everything in the narration of experience is a distortion’, Sterne suggests that attending to the realities of a world that is full of impairments helps one to more fully understand, and perhaps fight against, the expected norms that structure the social world. After laying out his case for an ‘impairment phenomenology’, Sterne turns to three kinds of impairment: vocal impairment, hearing loss, and fatigue - or as he puts it in our interview, ‘not speaking well, not hearing well, and not feeling well’. Through a careful analysis of the history, treatment, and highly varied sets of cultural attitudes toward these impairments, Sterne makes a compelling case for considering impairment as central to all human experience, raising vital political questions for accommodating bodily variety. Diminished Faculties is written in a range of registers – containing a detailed guide to an imagined exhibition of ‘new vocalities’, a User Guide to impairment theory, and a personal account of vocal paralysis – and synthesises cutting-edge theory from disability studies, sound studies, queer theory and much more. The book is written with generosity and a sense of humour, and will leave any reader thinking differently about how to understand issues of experience, agency and disability.

In our interview Jonathan mentions one of his favourite works ‘exhibited’ in the book’s imaginary exhibition, ‘Masque’ by Hodan Youssouf.

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Megan Birk, "The Fundamental Institution: Poverty, Social Welfare, and Agriculture in American Poor Farms" (U Illinois Press, 2022)

Fri, 22 Apr 2022 08:00:00 -0000

By the early 1900s, the poor farm had become a ubiquitous part of America's social welfare system. Megan Birk's history of this foundational but forgotten institution focuses on the connection between agriculture, provisions for the disadvantaged, and the daily realities of life at poor farms. Conceived as an inexpensive way to provide care for the indigent, poor farms in fact attracted wards that ranged from abused wives and the elderly to orphans, the disabled, and disaster victims. Most people arrived unable rather than unwilling to work, some because of physical problems, others due to a lack of skills or because a changing labor market had left them behind. Birk blends the personal stories of participants with institutional histories to reveal a loose-knit system that provided a measure of care to everyone without an overarching philosophy of reform or rehabilitation. In-depth and innovative, The Fundamental Institution: Poverty, Social Welfare, and Agriculture in American Poor Farms (U Illinois Press, 2022) offers an overdue portrait of rural social welfare in the United States.

Stephen Pimpare is director of the Public Service & Nonprofit Leadership program and Faculty Fellow at the Carsey School of Public Policy at the University of New Hampshire.

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A Conversation with Autumn Wilke about Disability in Higher Education

Fri, 15 Apr 2022 08:00:00 -0000

Today I talked to Autumn Wilke of Grinnell College about her book (co-authored with Nancy J. Evans, Ellen M. Broido, and Kirsten R. Brown) Disability in Higher Education: A Social Justice Approach (Jossey-Bass, 2017).

Disability in Higher Education examines how disability is conceptualized in higher education and ways in which students, faculty, and staff with disabilities are viewed and served on college campuses. Drawing on multiple theoretical frameworks, research, and experience creating inclusive campuses, this text offers a new framework for understanding disability using a social justice lens. Many institutions focus solely on legal access and accommodation, enabling a system of exclusion and oppression. However, using principles of universal design, social justice, and other inclusive practices, campus environments can be transformed into more inclusive and equitable settings for all constituents.

The authors consider the experiences of students, faculty, and staff with disabilities and offer strategies for addressing ableism within a variety of settings, including classrooms, residence halls, admissions and orientation, student organizations, career development, and counseling. They also expand traditional student affairs understandings of disability issues by including chapters on technology, law, theory, and disability services. Using social justice principles, the discussion spans the entire college experience of individuals with disabilities, and avoids any single-issue focus such as physical accessibility or classroom accommodations.

The book will help readers:

Consider issues in addition to access and accommodation
Use principles of universal design to benefit students and employees in academic, cocurricular, and employment settings
Understand how disability interacts with multiple aspects of identity and experience.

Despite their best intentions, college personnel frequently approach disability from the singular perspective of access to the exclusion of other important issues. This book provides strategies for addressing ableism in the assumptions, policies and practices, organizational structures, attitudes, and physical structures of higher education.

Marshall Poe is the founder and editor of the New Books Network. He can be reached at marshallpoe@newbooksnetwork.com.

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Jenifer L. Barclay, "The Mark of Slavery: Disability, Race, and Gender in Antebellum America" (U of Illinois Press, 2021)

Tue, 05 Apr 2022 08:00:00 -0000

Time and again, antebellum Americans justified slavery and white supremacy by linking blackness to disability, defectiveness, and dependency. In The Mark of Slavery: Disability, Race, and Gender in Antebellum America (University of Illinois Press, 2021), historian Jenifer L. Barclay examines the ubiquitous narratives that depicted black people with disabilities as pitiable, monstrous, or comical, narratives used not only to defend slavery but argue against it. As she shows, this relationship between ableism and racism impacted racial identities during the antebellum period and played an overlooked role in shaping American history afterward. Barclay also illuminates the everyday lives of the ten percent of enslaved people who lived with disabilities. Devalued by slaveholders as unsound and therefore worthless, these individuals nonetheless carved out an unusual autonomy. Their roles as caregivers, healers, and keepers of memory made them esteemed within their own communities and celebrated figures in song and folklore.

Prescient in its analysis and rich in detail, The Mark of Slavery is a powerful addition to the intertwined histories of disability, slavery, and race.

Jenifer L. Barclay is an Assistant Professor of History at SUNY Buffalo. Her research places African American history in conversation with the “new” disability history, a field that emphasizes disability as a lived human experience embedded in a set of socially constructed ideas that change over time, across cultures, and in relation to other categories of identity such as race, gender, class and sexuality. She earned her Ph.D. in African American History at Michigan State University.

Jerrad P. Pacatte is a Ph.D. candidate and School of Arts and Sciences Excellence Fellow in the Department of History at Rutgers University-New Brunswick. A social historian of gender, slavery, and emancipation in early America and the Atlantic World, Jerrad is currently completing his dissertation, entitled “The Work of Freedom: African American Women and the Ordeal of Emancipation in New England, 1740-1840” which examines the everyday lives, labors, and emancipation experiences of African-descended women in late-colonial and early republic New England. Jerrad is also increasingly interested in the history of slavery and disability in the context of early America; his research examining the lives and physically-disabling nature of enslavement in early New England will be published in two peer-reviewed anthologies - one of which is co-edited by Jenifer L. Barclay and Stefanie Hunt Kennedy - early next year.

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Ravi Malhotra and Benjamin Isitt, "Able to Lead: Disablement, Radicalism, and the Political Life of E. T. Kingsley" (U British Columbia Press, 2021)

Wed, 23 Mar 2022 08:00:00 -0000

People with disabilities have always struggled to make ends meet. Finding a job you can actually do, a housing situation you can afford that meets your needs, and simply going about the various daily tasks most of us take for granted all compound to make life under capitalism especially challenging. This makes the many disabled people who not only rise to meet their life-circumstances but go beyond them particularly inspiring.

One such figure in this category would be E.T. Kingsley, a socialist activist at the turn of the 20th century. After an injury working on railway lines in Montana left him a double-amputee, Kingsley traveled west, first to California and then eventually to British Columbia where he would work as a political speaker, candidate for office, editor and writer in the radical left.

His life is the focus of the book under discussion today, Able to Lead: Disablement, Radicalism, and the Political Life of E.T. Kingsley (U British Columbia Press, 2021) coauthored by Ravi Malhotra and Benjamin Isitt. Pooling their combined academic backgrounds and intellectual resources, the authors are able to tease out a number of quiet yet profound elements of Kingsley’s life and times, from the legal status of injuries and workers compensation to discussions around freedom of speech and the changing nature of the security-state. In all this contextual discussion, the authors still never allow Kingsley to disappear as a dynamic and passionate activist, one who managed to stand as a unique example of what it means to tirelessly fight for a better world. Drawing from a number of fields, the book will be of interest to a number of people, from labor historians and disability activists to legal scholars and political theorists, showing us that even as we are flung into circumstances not of our choosing, we can still rise above our circumstances and change the world.

Ravi Malhotra is a professor in the Faculty of Law at the University of Ottawa. Benjamin Isitt is a historian and legal scholar based in Victoria, British Columbia.

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Piers Gooding, "A New Era for Mental Health Law and Policy: Supported Decision-Making and the UN Convention on the Rights of Persons with Disabilities" (Cambridge UP, 2017)

Fri, 25 Feb 2022 09:00:00 -0000

This book cuts new ground by applying a human rights lens of analysis to domestic mental health laws. It makes a timely contribution into the discourse regarding mental health, supported decision-making and disability rights in the post CRPD era. In A New Era for Mental Health Law and Policy: Supported Decision-Making and the UN Convention on the Rights of Persons with Disabilities (Cambridge University Press, 2017) Research Fellow Dr Piers Gooding challenges law makers to bring domestic laws into compliance with the CRPD. At the same time, Gooding confronts the pragmatic concerns which continue to shape these same laws, such as the case where a person's mental impairment is perceived as a risk to self or others.

I had a great chat with Dr. Gooding in this hour; we spoke about arguments for and against coercive interventions, the right to and meaning of autonomy, tensions between rights based legalism and clinical governance, and more. We spoke about how domestic mental health laws have evolved since the 1980s, and especially since the introduction of the CRPD, and where to go from here.

Some of the scholarship mentioned in our conversation included that of Tina Minkowitz, John Fanning, and the collaborative work of Piers himself with Bernadette McSherry, Cath Roper, and Flick Grey.

Dr Piers Gooding is a Research Fellow at the Melbourne Social Equity Institute and Melbourne Law School, and is currently an Open Science Fellow at the Mozilla Foundation. His work focuses on the law and politics of disability and mental health, with a special interest in issues of legal capacity, decision-making, technology, and human rights.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Gaye T. Lansdell et al., "Neurodisability and the Criminal Justice System: Comparative and Therapeutic Responses" (Edward Elgar, 2021)

Wed, 23 Feb 2022 09:00:00 -0000

Neurodisability and the Criminal Justice System: Comparative and Therapeutic Responses (Edward Elgar Publishing, 2021) delves into an under-researched and little understood but extremely pertinent issue in law; the prevalence of neurodisability within criminal justice systems. Considering the challenges faced by both juveniles and adults with neuorodisabilities who come into contact with the criminal justice system, a host of interdisciplinary international scholars examine the issue from multiple perspectives; from that of lawyers, magistrates, and through the lens of therapeutic and legal analysis, this contribution offers suggestions for reform of both legislation and practice. The book makes the case that criminal justice systems lack the accommodations required both within the institution and the community to adequately support those with neurodisabilities who come into contact with the criminal justice system.

In this conversation, with one of the co-editors of the book, Anna Eriksson, we cover a broad range of ground - from the ways in which resources could be reallocated to better address issues of community safety, to how better with neurodisabilities may be better supported in a practical basis to bring more just, equitable and humane outcomes. This is an important book for criminal lawyers, policy makers, criminologists and members of the public who wish to understand and challenge the barriers that people with neurodisabilities face, not just as a result of the criminal justice system but on a day-to-day basis.

Gaye T. Lansdell is an Associate Professor in The Faculty of Law at Monash University.

Bernadette J Saunders is a Senior Lecturer in the Department of Medicine, Nursing and Health Sciences at Monash University.

Anna Eriksson is an Associate Professor in Criminology at Monash University.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Sydney A. Halpern, "Dangerous Medicine: The Story Behind Human Experiments with Hepatitis" (Yale UP, 2021)

Wed, 09 Feb 2022 05:00:00 -0000

From 1942 through 1972, American biomedical researchers deliberately infected people with hepatitis. Government-sponsored researchers were attempting to discover the basic features of the disease and the viruses causing it, and develop interventions that would quell recurring outbreaks. Drawing from extensive archival research and in-person interviews, Sydney Halpern traces the hepatitis program from its origins in World War II through its expansion during the initial Cold War years, to its demise in the early 1970s amid outcry over research abuse. The subjects in hepatitis studies were members of stigmatized groups--conscientious objectors, prison inmates, and developmentally disabled adults and children. Dangerous Medicine: The Story Behind Human Experiments with Hepatitis (Yale UP, 2021) reveals how researchers invoked military and scientific imperatives and the rhetoric of common good to win support for the experiments and access to potential recruits. Halpern examines consequences of participation for subjects' long-term health, and raises troubling questions about hazardous human experiments aimed at controlling today's epidemic diseases.

Claire Clark is a medical educator, historian of medicine, and associate professor in the University of Kentucky’s College of Medicine.

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Sarah and Larry Nannery, "What to Say Next: Successful Communication in Work, Life, and Love with Autism Spectrum Disorder" (Tiller Press, 2021)

Thu, 23 Dec 2021 09:00:00 -0000

Today I talked to Sarah and Larry Nannery about their new book What to Say Next: Successful Communication in Work, Life, and Love with Autism Spectrum Disorder (Tiller Press, 2021).

What’s it like to live a life where there’s a time delay as you process what others are saying, what it might mean, and how you feel in response? Sarah Nannery knows that experience intimately, gaining in ability over the years to navigate everything from office politics to her personal life more adeptly given her ASD Brain. As a “neurotypical brain” person, her husband Larry Nannery adds his “two-cents” perspective here in terms of observing and helping Sarah and himself navigate their experiences together. Highlights of this conversation include: what internalization means to Sarah in coping with being “bottled up inside” more than perhaps most people, and how one makes a “conversational sandwich” as a way of handling small talk when it looms large as a challenge.

Sarah Nannery is the director of development for Autism Initiatives at Drexel University. Larry Nannery is a technology consultant who focuses on organizational change and life-coaching.

Dan Hill, PhD, is the author of nine books and leads Sensory Logic, Inc. (https://www.sensorylogic.com). His new book is Blah, Blah, Blah: A Snarky Guide to Office Lingo. To check out his related “Dan Hill’s EQ Spotlight” blog, visit https://emotionswizard.com.

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Jan Nisbet and Nancy Weiss, "Pain and Shock in America: Politics, Advocacy, and the Controversial Treatment of People with Disabilities" (Brandeis UP, 2021)

Thu, 02 Dec 2021 09:00:00 -0000

Amid a string of fall 2021 news reports about past-due exonerations and (white) self-defense that document the limits of racial justice within the U.S. legal system, Pain and Shock in America: Politics, Advocacy, and the Controversial Treatment of People with Disabilities (Brandeis University Press, 2021) becomes an even more relevant and timely book. Dr. Jan Nisbet, who authored the book with contributions from Nancy Weiss, introduces it succinctly: “The story is long, complicated, and filled with questions about society and its ability to care about, protect, and support the most vulnerable citizens. It is a story that calls into question the degree to which people who do not have disabilities can separate themselves from those who do, allowing painful interventions that they themselves would not likely tolerate” (2021, p. 8). If justice is central to evaluations of the social policies and public institutions charged with administering it, disability–as core issue theorized in philosophies of justice–must be centered as well (Putnam et al., 2019).

To this end, Pain and Shock in America “intentionally highlights the hard-fought battles of disabled survivors like Jennifer Msumba and disabled-led advocacy organizations like the Autistic Self-Advocacy Network,” as “disabled self-advocates (who also happen to be lawyers)” (Nisbet 2021, p. vii-viii) Shain M. Neumeier and Lydia X.Z. Brown write in the Foreword––themselves appearing in the book as leaders with critical roles. The volume chronicles a nearly half-century saga involving the law, education, psychology, and medical fields as they converge in methods and culture of The Judge Rotenberg Center, a privately-run facility in Massachusetts which, despite six student deaths and consistent frequent citations for abuse and neglect, has been funded by taxpayers from about a dozen states and our nation’s capital as a placement for students with disabilities. Though its use of a self-made electric shock device makes the Judge Rotenberg Center unique in the country and perhaps the world, its institutional history provides a broader if extreme “lens through which we can understand the societal issues facing people with disabilities and their families” (Nisbet 2021, p. 10)

Jan Nisbet is professor emeritus at the University of New Hampshire, where she served for ten years as the senior vice provost for research. Before assuming that position, she was the founding director of the Institute on Disability and professor in the Department of Education. She has been principal investigator on many state- and nationally-funded projects related to children and adults with disabilities.

Nancy R. Weiss is a faculty member and the Director of the National Leadership Consortium on Developmental Disabilities at the University of Delaware. She is the former Executive Director of TASH, an international advocacy association committed to the full inclusion of people with disabilities. She has more than forty years of experience in the field of intellectual and developmental disabilities and has worked extensively providing community living and positive behavioral supports.

Christina A. Bosch is an assistant professor of special education in the Literacy, Early, Bilingual and Special Education Department of the Kremen School of Education and Human Development at California State University Fresno; on Twitter as @DocCABosch

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Michelle R. Nario-Redmond, "Ableism: The Causes and Consequences of Disability Prejudice" (John Wiley and Sons, 2019)

Mon, 22 Nov 2021 09:00:00 -0000

Of the dozens of juicy questions for future inquiry that Dr. Michelle Nario-Redmond provides at the end of Ableism: The Causes and Consequences of Disability Prejudice (Published by Wiley in 2021), the following stands out the most to me, in my various group-membership roles:

How do we build common ground between disadvantaged groups for effective cross-impairment coalitions?

Though it seemed impossible for this question to feel any more urgent after over a year and a half of COVID-19 and the parallel prominence of social movements to make Black Lives Matter, a recent article by my latest author crush unpacking a profoundly intersectional moment in the meme culture of what we should be calling (thanks to Neal Stephenson’s 30-year old book) Metaverse 1.0 – AKA social media, especially those platforms now owned by the maybe-monopoly formerly known as Facebook – reminded me again of the immense possibilities of disability as a political identity (see Annamma & Morrison, 2018, particularly the footnotes for more background on this). Nicole Froio’s article-that-should-become-a-book extrapolates from a celebrity’s (whack!) Instagram post as an exemplification of what the writer dubs the masculine “performativity of doing the least,” in which the “‘model’ heterosexual family consists of an all-sacrificing mother, a paternalistic father, and children free from disability.”

The timing of Froio’s deft analysis and the 34,000 likes it has garnered–compared to the upwards of 2 million bestowed upon the post in question—remind me of beloved if nuclear boomer Bill Maher’s synchronous editorial segment comparing “model citizen” Greta Thunburg (who is autistic), with 13 million followers, to the “model” (capitalist straight femme normate) Kylie Jenner, with 279 million.

Christina Anderson Bosch is an assistant professor of special education at the California State University, Fresno, also on Twitter @DocCABosch.

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Aaron J. Jackson, "Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities" (U California Press, 2021)

Thu, 18 Nov 2021 09:00:00 -0000

Aaron J. Jackson is a Lecturer in Anthropology at Victoria University. His research focuses on fatherhood, care, and disability.

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Julia Bahner, "Sexual Citizenship and Disability: Understanding Sexual Support in Policy, Practice and Theory" (Routledge, 2021)

Fri, 12 Nov 2021 09:00:00 -0000

What does ‘sexual citizenship’ mean in practice for people with mobility impairments who may need professional support to engage in sexual activity? Sexual Citizenship and Disability: Understanding Sexual Support in Policy, Practice and Theory (Routledge, 2021) explores this subject through empirical investigation based on case studies conducted in four countries – Sweden, England, Australia and the Netherlands – and develops the abstract notion of ‘sexual citizenship’ to make it practically relevant to disabled people, professionals in disability services and policy-makers. Through a cross-national approach, it demonstrates the variability of how sexual rights are understood and their culturally specific nature. It also shows how the personal is indeed political: states’ different policy approaches change the outcomes for disabled people in terms of support to explore and express their sexualities. By proposing a model of sexual facilitation that can be used in policy development, to better cater to disabled service users’ needs as well as furthering the theoretical understanding of sexual rights and sexual citizenship, this book will be of interest to professionals in disability services and policy-makers as well as academics and students working in the following subject areas: Disability Studies, Sociology, Social Policy, Sexuality Studies/Sexology, Social Work, Nursing, Occupational Therapy and Public Health.

Julia Bahner is a postdoctoral fellow at the School of Social Work, Lund University, Sweden, and was formerly Marie Curie Individual Fellow at the Centre for Disability Studies, School of Sociology, University of Leeds, UK. She holds a PhD in social work and has worked extensively with disabled people’s organisations, sexual rights organisations and disability service organisations to develop better policies and practices around sexuality, disability and support.

Sohini Chatterjee is a PhD Student in Gender, Sexuality, and Women's Studies at Western University, Canada. Her work has recently appeared in South Asian Popular Culture and Fat Studies.

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Luke Clements, "Clustered Injustice and The Level Green" (Legal Action Group, 2020)

Mon, 08 Nov 2021 09:00:00 -0000

In Clustered Injustice and The Level Green (Legal Action Group, 2020), Professor Luke Clements tackles the problem of the way in which "our legal system generates and exacerbates disadvantage." Examining the interconnectedness of disadvantage faced by many minorities - such as people who are homeless, Roma, Gypsies and Travelling people, disabled people, those within the criminal justice system, people who are chronically poor and more - he makes an argument that law segregates individuals' problems into isolated incidences, but rather than solving problems, this segregation exacerbates disadvantage. Injustice is clustered, it is interconnected and law, policy and bureaucracies' failure to recognise this keeps people in positions of relative disadvantage and limits their opportunities to flourish in their own conception of the good life.

However, it is not all bad news. building on a wealth of professional experience and theoretical insight, Luke offers a roadmap for reform. He seeks to imagine a better system which would be better not just for those who face disadvantage, but for all members of the community.

Luke is the Cerebra Professor of Law and Social Justice at the School of Law, Leeds University. He practised as a solicitor between 1981 and 2021 and in that capacity had conduct of a number of cases before the European Commission and Court of Human Rights. In 1996 he was the solicitor who took the first Roma case to reach the Strasbourg Court Buckley v. UK (1996)

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Anthony Ianni, "Centered: Autism, Basketball, and One Athlete's Dreams" (Red Lightning Books, 2021)

Tue, 02 Nov 2021 08:00:00 -0000

"They don't know me. They don't know what I'm capable of." Diagnosed with pervasive developmental disorder, a form of autism, as a toddler, Anthony Ianni wasn't expected to succeed in school or participate in sports, but he had other ideas. As a child, Ianni told anybody who would listen, including head coach Tom Izzo, that he would one day play for the Michigan State Spartans.

Centered: Autism, Basketball, and One Athlete's Dreams is the firsthand account of a young man's social, academic, and athletic struggles and his determination to reach his goals. In this remarkable memoir, Ianni reflects on his experiences with both basketball and the autism spectrum. Centered, an inspirational sports story in the vein of Rudy, reveals Ianni to be unflinching in his honesty, generous in his gratitude, and gracious in his compassion.

Sports fans will root for the underdog. Parents, teachers, and coaches will gain insight into the experience of an autistic child. And everyone will triumph in the achievements of Centered.

Galina Limorenko is a doctoral candidate in Neuroscience with a focus on biochemistry and molecular biology of neurodegenerative diseases at EPFL in Switzerland. To discuss and propose the book for an interview you can reach her at galina.limorenko@epfl.ch.

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Jacki Edry, "Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery, and Faith" (2021)

Fri, 22 Oct 2021 08:00:00 -0000

Jacki Edry's Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery, and Faith (2021) is a journey between the worlds of autism, neurodiversity, brain surgery recovery, and faith. It provides a rare glimpse into how sensory and neurological processing affect functioning and thought, through the eyes of a professional, parent, and woman who has experienced them firsthand.This book presents an informative, emotional, and empowering account of the challenges and struggles on the road to recovery ‒ as well as the search for understanding, meaning, and faith. It enables you to step into the shoes of someone who has endured the types of sensory irregularities common in people with neurodiversity; including autism, ADHD, dyslexia, Irlen Syndrome, Auditory Processing Disorder, and more, and to gain understanding as to how to cope with these challenges and to compensate for them.Moving forward will enlighten parents, professionals, and family members to better understand and assist the neurodivergent people whom they work with and love.

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Allyson Day, "The Political Economy of Stigma: HIV, Memoir, Medicine, and Crip Positionalities" (Ohio State UP, 2021)

Fri, 15 Oct 2021 08:00:00 -0000

In The Political Economy of Stigma: HIV, Memoir, Medicine, and Crip Positionalities (Ohio State UP, 2021), Ally Day offers a compelling critique of neoliberal medical practices in the US by coupling an analysis of HIV memoir with a critical examination of narrative medicine practice. Using insights from feminist disability studies and crip theory, Day argues that stories of illness and disability—such as HIV memoirs—operate within a political economy of stigma, which she defines as the formal and informal circulation of personal illness and disability narratives that benefits some while hindering others. On the one hand, this system decreases access to appropriate medical care for those with chronic conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives and circulate them for public consumption.

The political economy of stigma is theorized from three primary research sites: a reading group with women living with HIV, a reading group with AIDS service workers, and participant observation research and critical close reading of practices in narrative medicine. Ultimately, it is the women living with HIV who provide an alternative way to understand disability and illness narratives, a practice of differential reading that can challenge stigmatizing tropes and reconceptualize the creation, reception, and circulation of patient memoir.

Dr. Ally Day is Associate Professor in Disability Studies at the University of Toledo.

Sohini Chatterjee is a PhD Student in Gender, Sexuality, and Women's Studies at Western University, Canada. Her work has recently appeared in South Asian Popular Culture and Fat Studies.

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Linda Steele, "Disability, Criminal Justice and Law: Reconsidering Court Diversion" (Routledge, 2020)

Tue, 28 Sep 2021 08:00:00 -0000

With a focus on the court diversion of disabled people, Disability, Criminal Justice and Law: Reconsidering Court Diversion (Routledge 2020) undertakes a theoretical and empirical examination of how law is complicit in debilitating disabled people. In our post-institutionalisation era, diversion of disabled people from the court process is often assumed to be humane, therapeutic and socially just. However, in this work, Dr. Linda Steele draws on Foucauldian theory of biopolitics, critical legal and political theory, and critical disability theory to show that court diversion perpetuates oppression against disabled people. She shows how criminal law and mental health systems are complicit in the coercion and control of disabled bodies, of whom may not even be convicted. The normative function of court diversion is to reinforce boundaries which are at the core of jurisdiction, legal personhood and sovereignty. Steele critiques the United Nations Convention on the Rights of Persons with Disabilities to show that it does not deal with the complexities of court diversion, suggesting that the CRPD is of limited use in its abilities to challenge carceral control and legal and settler colonial violence.

Dr. Linda Steele is a Senior Lecturer in Law at the University of Technology, Sydney. She researches the intersections of disability, law and social justice. Prior to a career in academia, Dr. Steele was a solicitor with the Intellectual Disability Rights Service.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK.

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Daniel Gibbs, "A Tattoo on my Brain: A Neurologist's Personal Battle against Alzheimer's Disease" (Cambridge UP, 2021)

Wed, 22 Sep 2021 08:00:00 -0000

Dr Daniel Gibbs is one of 50 million people worldwide with an Alzheimer's disease diagnosis. Unlike most patients with Alzheimer's, however, Dr Gibbs worked as a neurologist for twenty-five years, caring for patients with the very disease now affecting him. Also unusual is that Dr Gibbs had begun to suspect he had Alzheimer's several years before any official diagnosis could be made. Forewarned by genetic testing showing he carried alleles that increased the risk of developing the disease, he noticed symptoms of mild cognitive impairment long before any tests would have alerted him. In A Tattoo on my Brain: A Neurologist's Personal Battle against Alzheimer's Disease (Cambridge UP, 2021), Dr Gibbs documents the effect his diagnosis has had on his life and explains his advocacy for improving early recognition of Alzheimer's. Weaving clinical knowledge from decades caring for dementia patients with his personal experience of the disease, this is an optimistic tale of one man's journey with early-stage Alzheimer's disease.

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Stephen Hinshaw, “Understanding ADHD” (Open Agenda, 2021)

Thu, 09 Sep 2021 08:00:00 -0000

Understanding ADHD is based on an in-depth, filmed conversation between Howard Burton and Stephen Hinshaw, Professor of Psychology at UC Berkeley. Stephen Hinshaw is an expert in the fields of clinical child and adolescent psychology and developmental psychopathology, as well as stigma, preventive interventions and dehumanization related to mental illness.

Howard Burton is the founder of the Ideas Roadshow, Ideas on Film and host of the Ideas Roadshow Podcast. He can be reached at howard@ideasroadshow.com.

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Roy Richard Grinker, "Nobody’s Normal: How Culture Created the Stigma of Mental Illness" (Norton, 2021)

Wed, 01 Sep 2021 08:00:00 -0000

Stigma about mental illness makes life doubly hard for people suffering from mental or emotional distress. In addition to dealing with their conditions, they must also contend with social shame and secrecy. But by examining how mental illness is conceived of and treated in other cultures, we can improve our own perspectives in the Western world. In his new book, Nobody’s Normal: How Culture Created the Stigma of Mental Illness (Norton, 2021), anthropologist Roy Richard Grinker offers a critique of our current mental health system based on cross-cultural observations as well as suggestions for improving upon it. In our interview, we talk about the impact of stigma on mental health treatment and his ideas about where it comes from. He also explains why he feels optimistic about recent trends in the way individuals speak about their mental health challenges.

Roy Richard Grinker is professor of anthropology and international affairs at George Washington University. His specialties include ethnicity, nationalism, and psychological anthropology, with topical expertise in autism, Korea, and sub-Saharan Africa. He is also the director of George Washington University’s Institute for Ethnographic Research and editor-in-chief of the journal Anthropological Quarterly. He is author of several books, including Unstrange Minds: Remapping the World of Autism. He lives in Washington, DC.

Eugenio Duarte, Ph.D. is a psychologist and psychoanalyst practicing in Miami. He treats individuals and couples, with specialties in gender and sexuality, eating and body image problems, and relationship issues. He is a graduate and faculty of William Alanson White Institute in Psychiatry, Psychoanalysis, and Psychology in New York City and former chair of their LGBTQ Study Group; and faculty at Florida Psychoanalytic Institute in Miami. He is also a contributing author to the book Introduction to Contemporary Psychoanalysis: Defining Terms and Building Bridges (2018, Routledge) and has published on issues of gender, sexuality, and sexual abuse.

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Jay Gargus, “Autism: A Genetic Perspective” (Open Agenda, 2021)

Tue, 24 Aug 2021 08:00:00 -0000

Autism: A Genetic Perspective is based on an in-depth filmed conversation between Howard Burton and Jay Gargus, Professor of Physiology, Biophysics and Pediatrics and Director of the Center for Autism Research and Translation at UC Irvine. This wide-ranging conversation examines the recent explosion in our genetic understanding and its implications for the future of medicine, together with the importance of understanding the underlying molecular mechanisms in order to successfully treat a wide range of genetic disorders. Prof. Gargus focuses on autism, dispelling myths associated with the condition, advocating why a treatment should be actively pursued, and illustrating what we can learn from the recent breakthrough in cystic fibrosis research.

Howard Burton is the founder of the Ideas Roadshow, Ideas on Film and host of the Ideas Roadshow Podcast. He can be reached at howard@ideasroadshow.com.

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Uta Frith, “Exploring Autism” (Open Agenda, 2021)

Mon, 23 Aug 2021 08:00:00 -0000

Exploring Autism is based on an in-depth filmed conversation between Howard Burton and one of the world’s leading experts on autism Uta Frith, Professor of Cognitive Development at University College London. Topics that are examined in this extensive conversation are what autism actually is, the reasons behind the increased number of diagnoses over the last few years, autism spectrum disorders, Asperger’s syndrome, mentalizing, brain imaging to research the cognitive and neurobiological bases of autism and much more.

Howard Burton is the founder of the Ideas Roadshow, Ideas on Film and host of the Ideas Roadshow Podcast. He can be reached at howard@ideasroadshow.com.

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Camillia Kong, "Mental Capacity in Relationship: Decision-Making, Dialogue, and Autonomy" (Cambridge UP, 2017)

Mon, 16 Aug 2021 08:00:00 -0000

Mental Capacity in Relationship: Decision-Making, Dialogue, and Autonomy (Cambridge University Press, 2017), challenges the current legal landscape of mental capacity law and human rights legislation, arguing that assessments of mental capacity should take account the role of relationships in the decision-making capacity of individuals with impairments and mental disorders. Dr. Camillia Kong's is an interdisciplinary exploration, combining philosophy, legal analysis on the law of England and Wales, the European Convention of Human Rights, and the UN Convention on the Rights of Persons with Disabilities. Kong defends a concept of mental capacity, but one which at times provides scope for justifiable interventions into disabling relationships. The implications of Kong's hypothesis are groundbreaking; she provides a framework which articulates the practice of capacity assessments to help to better situate, interpret, and understand the decisions and actions of people with impairments.

This monograph is the basis of another publication (co-written with Alex Ruck Keene) Overcoming Challenges in the Mental Capacity Act 2005: Practical Guidance for Working with Complex Issues (Jessica Kingsley, 2018). You can listen to that interview with Dr. Kong and Ruck-Keene here.

Dr Camillia Kong is a Senior Research Fellow at the Institute for Crime & Justice, Policy Research at Birkbeck, University of London. She is the Principal Investigator of Judging Values and Participation in Mental Capacity Law.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Anna Stenning et al., "Neurodiversity Studies: A New Critical Paradigm" (Routledge, 2020)

Wed, 21 Jul 2021 08:00:00 -0000

Building on work in feminist studies, queer studies and critical race theory, this volume challenges the universality of propositions about human nature, by questioning the boundaries between predominant neurotypes and 'others', including dyslexics, autistics and ADHDers.

Neurodiversity Studies: A New Critical Paradigm (Routledge, 2020) is the first work of its kind to bring cutting-edge research across disciplines to the concept of neurodiversity. It offers in-depth explorations of the themes of cure/prevention/eugenics; neurodivergent wellbeing; cross-neurotype communication; neurodiversity at work; and challenging brain-bound cognition. It analyses the role of neuro-normativity in theorising agency, and a proposal for a new alliance between the Hearing Voices Movement and neurodiversity. In doing so, we contribute to a cultural imperative to redefine what it means to be human. To this end, we propose a new field of enquiry that finds ways to support the inclusion of neurodivergent perspectives in knowledge production, and which questions the theoretical and mythological assumptions that produce the idea of the neurotypical.

Working at the crossroads between sociology, critical psychology, medical humanities, critical disability studies, and critical autism studies, and sharing theoretical ground with critical race studies and critical queer studies, the proposed new field - neurodiversity studies - will be of interest to people working in all these areas.

Christina Anderson Bosch is faculty at the California State University, Fresno. She is curious about + committed to public, inclusive education in pluralistic societies where critical perspectives on questions of social and ecological justice are valued enough to enact material dignity and metaphysical wellbeing on massive scales.

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Jane Gallop, "Sexuality, Disability, and Aging: Queer Temporalities of the Phallus" (Duke UP, 2019)

Mon, 28 Jun 2021 08:00:00 -0000

Drawing on her own experiences with late-onset disability and its impact on her sex life, along with her expertise as a cultural critic, Jane Gallop explores how disability and aging work to undermine one's sense of self. She challenges common conceptions that equate the decline of bodily potential and ability with a permanent and irretrievable loss, arguing that such a loss can be both temporary and positively transformative. With Sexuality, Disability, and Aging: Queer Temporalities of the Phallus (Duke UP, 2019), Gallop explores and celebrates how sexuality transforms and becomes more queer in the lives of the no longer young and the no longer able while at the same time demonstrating how disability can generate new forms of sexual fantasy and erotic possibility.

Jana Byars is the Academic Director of Netherlands: International Perspectives on Sexuality and Gender.

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George Szmukler, "Men in White Coats: Treatment Under Coercion" (Oxford UP, 2017)

Wed, 09 Jun 2021 08:00:00 -0000

The laws that govern psychiatric treatment under coercion have remain largely unchanged since the eighteenth century. But this is not because of their effectiveness, rather, these laws cling to outdated notions of disability, mental illness and mental disorder why deny the fundamental rights of this category of people on an equal basis with all others. In Men in White Coats: Treatment Under Coercion (Oxford University Press, 2017) Professor George Szmukler examines the violation of these rights, such as the right to autonomy, self-determination, liberty, and security and integrity of the person in the context of the domestic laws which themselves perpetuate ongoing discrimination against people with mental impairments.

Tracing first the history of the medical coercion and involuntary treatment of people with mental illnesses and mental disorders, Professor Szmukler offers a potential path which he argues would end discrimination against this category of people. He puts forward a legal framework which is non-discriminatory and is based on a person's decision-making abilities and best interests, as opposed to a diagnosis. Crucially, he argues that this law is generic, and would not apply by reason of a person's mental disorder. His solution - Fusion Law - would better support people's autonomy, better engage with the Convention on the Rights of Persons with Disabilities, and have significant social value by recognising the dignity and equality of people with mental health impairments. It would also have implications for the forensics system, in particular, with regards to defendants who have mental disorders.

Professor George Szmukler is a psychiatrist who started practising in the field as a trainee in 1972. He retired from clinical work in 2012, and is now an Emeritus Professor of Psychiatry and Society at the Institute of Psychiatry, Psychology and Neuroscience at King's college London. His major research now concerns methods of reducing compulsion and ’coercion’ in psychiatric care, for example, through the use of ’advance statements’. A related interest is mental health law, particularly the possibility of generic legislation centred on impaired decision-making capacity which would apply to all persons, regardless of the cause of the underlying disturbance of mental functioning.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Nate Holdren, "Injury Impoverished: Workplace Accidents, Capitalism, and Law in the Progressive Era" (Cambridge UP, 2020)

Thu, 03 Jun 2021 08:00:00 -0000

Nate Holdren is the author of Injury Impoverished: Workplace Accidents, Capitalism, and Law in the Progressive Era, published by Cambridge University Press in 2020. Injury Impoverished looks at the history of U.S. workplace injuries in the late-19th and early-20th Centuries. As the workers, employers, and reformers attempted to tackle the drastically high rates of workplace injuries and deaths, the nation passed a number of compensation laws that fundamentally changed how the law approached workplace injuries. Holdren, in examining this history illustrates the many shortcomings of these laws, and how laws meant to help employees were often used to do the exact opposite. At the heart of Holdren’s study is whether or not the economy and the legal system was interested in and able to do justice for a workers.

Dr. Holdren is an Assistant Professor at Drake University.

Derek Litvak is a PhD candidate at the University of Maryland—College Park. His dissertation, "The Specter of Black Citizens: Race, Slavery, and Citizenship in the Early United States," examines how citizenship was used to both bolster the institution of slavery and exclude Black Americans from the body politic.

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Jeanne Simons and Sabine Oishi, "Behind the Mirror: The Story of a Pioneer in Autism Treatment and Her Work with Children on the Spectrum" (Johns Hopkins UP, 2021)

Tue, 01 Jun 2021 08:00:00 -0000

Jeanne Simons devoted her career as a social worker and educator to the study, treatment, and care of children with autism. In 1955, she established the Linwood Children's Center in Ellicott City, Maryland, one of the first schools dedicated to children with autism. Her Linwood Model, developed there, was widely adopted and still forms the basis for a variety of autism intervention techniques. Incredibly—although unknown at the time—Jeanne was herself autistic.

Behind the Mirror: The Story of a Pioneer in Autism Treatment and Her Work with Children on the Spectrum (Johns Hopkins UP, 2021) reveals the remarkable tale of Simons. In this interview I speak with Dr. Sabine Oishi, who co-author this book with Simons and also the book, the hidden child.

Sabine Oishi, PhD, was educated first as a teacher and then as a child psychologist at the University of Geneva. She earned her PhD in child development and family therapy from the University of Maryland. She has worked as a teacher, researcher, and therapist both in Switzerland and the United States. With Jeanne Simons, she was the coauthor of The Hidden Child.

Dr. Yakir Englander is the National Director of Leadership programs at the Israeli-American Council. He also teaches at the AJR. He can be reached at: Yakir1212englander@gmail.com

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Lisa Waddington and Anna Lawson, "The UN Convention on the Rights of Persons with Disabilities in Practice" (Oxford UP, 2018)

Wed, 12 May 2021 08:00:00 -0000

The UN Convention on the Rights of Persons with Disabilities in Practice: A Comparative Analysis of the Role of Courts (Oxford UP, 2018) brings together an extraordinary collection of data and analysis which concerns how domestic courts interpret and apply the Convention on the Rights of Persons with Disabilities. It is the first thorough comparative collection of research which brings together the approaches to the interpretation and application of the CRPD in domestic courts across thirteen jurisdictions from around the world. In this groundbreaking book, leading global scholars in disability law, Professor Lisa Waddington and Professor Anna Lawson, give the reader unique insight into the influence that the CRPD is having in domestic courts. The first part of the book provides an extensive comparative analysis of the role of the courts in bringing about compliance with the Convention. The second half of the book brings together these findings, offering understandings into the implications for human rights law and theory, contextualised more broadly in international human rights law. This work will be the basis for extensive research into the uses and application of the CRPD, especially with regards to the function and limits of the role of the courts in disability rights enforcement.

The book is be an essential resource for any scholar or student of disability law, international law, and human rights.

Lisa Waddington is a Professor, and Endowed Chair of International and European Law in the faculty of law in Maastricht University in the Netherlands. She holds the European Disability Forum Chair in European Disability Law and her principal area of interest lies in European and comparative disability law, the UN Convention on the Rights of Persons with Disabilities, and European and comparative equality law.

Anna Lawson is a Professor in disability and law at the University of Leeds. She is the Joint Director of the University wide interdisciplinary Centre for Disability Studies and the Co-ordinator of the Disability Law Hub. She holds membership, trustee and advisory positions in a range of local, national and international disabled people’s and human rights organisations and regularly advises policy-makers, governments and intergovernmental organisations.

Jane Richards is a doctoral student at the University of Hong Kong. You can find her on twitter where she follows all things related to human rights and Hong Kong politics @JaneRichardsHK

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Michael D. Snediker, "Contingent Figure: Chronic Pain and Queer Embodiment" (U Minnesota Press, 2021)

Fri, 16 Apr 2021 08:00:00 -0000

In this episode, I interview Michael Snediker, professor of English at the University of Houston, about his book, Contingent Figure: Chronic Pain and Queer Embodiment, recently published by University of Minnesota Press. At the intersection of queer theory and disability studies, Snediker locates something unexpected: chronic pain. Starting from this paradigm-shifting insight, Snediker elaborates a bracing examination of the phenomenological peculiarity of disability, articulating a complex idiom of figuration as the lived substance of pain’s quotidian. This lexicon helps us differently inhabit both the theoretical and phenomenal dimensions of chronic pain and suffering by illuminating where these modes are least distinguishable.

Suffused with fastidious close readings, and girded by a remarkably complex understanding of phenomenal experience, Contingent Figure resides in the overlap between literary theory and lyric experiment. Snediker grounds his exploration of disability and chronic pain in dazzling close readings of Herman Melville, Emily Dickinson, Henry James, and many others. Its juxtaposition of these readings with candid autobiographical accounts makes Contingent Figure an exemplary instance of literary theory as a practice of lyric attention. Thoroughly rigorous and anything but predictable, this stirring inquiry leaves the reader with a rich critical vocabulary indebted to the likes of Maurice Blanchot, Gilles Deleuze, D. O. Winnicott, and Eve Kosofsky Sedgwick. A master class in close reading’s inseparability from the urgency of lived experience, this book is essential for students and scholars of disability studies, queer theory, formalism, aesthetics, and the radical challenge of Emersonian poetics across the long American nineteenth century.

Britt Edelen is a Ph.D. student in English at Duke University. He focuses on modernism and the relationship(s) between language, philosophy, and literature. You can find him on Twitter or send him an email.

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Dennis J. Frost, "More Than Medals: A History of the Paralympics and Disability Sports in Postwar Japan" (Cornell UP, 2021)

Mon, 29 Mar 2021 08:00:00 -0000

Dennis Frost’s More than Medals: A History of the Paralympics and Disability Sports in Postwar Japan is a history of disability sports in modern Japan. The 1964, 1998, and upcoming Paralympics are important case studies, but Frost’s interests go far beyond this pinnacle of international, competitive disability sports. More than Medals explores the history and development of disability sports, highlighting Japan as an international actor, Oita prefecture as a domestic and international disability sports mecca, and most of all the ongoing tension between two visions of the purpose of disability sports: one which is primarily rehabilitative and the other which emphasizes elite athletic competition. This, as Frost shows, is fundamental to understanding the dynamics of accessibility and inclusivity in disabled sports. More than Medals will appeal to readers interested in the history of Japan, sports, and mega-events such as the Paralympics, as well as to those interested in disability studies.

Nathan Hopson is an associate professor of Japanese and East Asian history in the Graduate School of Humanities, Nagoya University.

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Liat Ben-Moshe, "Decarcerating Disability: Deinstitutionalization and Prison Abolition" (U Minnesota Press, 2020)

Fri, 12 Mar 2021 09:00:00 -0000

Prison abolition and decarceration are increasingly debated, but it is often without taking into account the largest exodus of people from carceral facilities in the twentieth century: the closure of disability institutions and psychiatric hospitals. Decarcerating Disability (2020, University of Minnesota Press) provides a much-needed corrective, combining a genealogy of deinstitutionalization with critiques of the current prison system.

Liat Ben-Moshe (https://www.liatbenmoshe.com/) provides groundbreaking case studies that show how abolition is not an unattainable goal but rather a reality, and how it plays out in different arenas of incarceration—antipsychiatry, the field of intellectual disabilities, and the fight against the prison-industrial complex. Ben-Moshe discusses a range of topics, including why deinstitutionalization is often wrongly blamed for the rise in incarceration; who resists decarceration and deinstitutionalization, and the coalitions opposing such resistance; and how understanding deinstitutionalization as a form of residential integration makes visible intersections with racial desegregation. By connecting deinstitutionalization with prison abolition, Decarcerating Disability also illuminates some of the limitations of disability rights and inclusion discourses, as well as tactics such as litigation, in securing freedom.

Decarcerating Disability’s rich analysis of lived experience, history, and culture helps to chart a way out of a failing system of incarceration.

C.J. Valasek is a Ph.D. Candidate in Sociology & Science Studies at the University of California San Diego.

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C. L. Estes and N. B. DiCarlo, "Aging A-Z: Concepts Toward Emancipatory Gerontology" (Routledge, 2019)

Wed, 03 Mar 2021 09:00:00 -0000

It’s often said that the time in our lives can often pass without us noticing. Old age can come before we realize it, and it brings with it new elements to our own daily lives that we couldn’t have anticipated before. Observed from a distance and growing old can seem like a universal experience, but observed up close, it becomes clear that the different ways people age are as varied and unique as the people themselves, and these differences can come from within and without. Whether you get to live out your twilight years in a comfortable retirement home in the country, or an understaffed inner-city hospital, these experiences will be profoundly different, and likely had different paths that led to them. Viewed in this way, aging is seen not as some eternal experience that is the same for all people, but as a fundamental part of our politics and economic dynamics, for better and for worse. The COVID-crisis of the last year has brought to light how vulnerable our elderly are, how understaffed our care-facilities are, and how much needs to change to provide lives of safety, comfort and dignity to our elders, but in many ways all this crisis has done is exacerbated certain tensions and antagonisms that were already there, barely concealed by the relentless optimism of neoliberal technocrats. Changing these systems will mean rethinking the aging process, and connecting it with broader questions traditionally raised by the fields of critical theory and radical critiques of political economy.

Diving right into this project are my guests today, Carroll Estes and Nicholas DiCarlo, here to discuss their recent publication Aging A-Z: Concepts Toward Emancipatory Gerontology (Routledge 2019). Styled as a sort of dictionary, the book has entries for a number of terms you would expect a book like this to have: Ableism, Home Care and Retirement all make appearances. Readers will be surprised, however, by the number of entries that also make appearances: Climate Change, Colonialism, Epistemology, Leninist Strategy and Praxis all make appearances as well. This book then is incredibly broad in scope, and attempts to force readers to realize the ways in which aging is affected that go beyond one’s immediate concern, bringing a new layer of understanding to the phrase: ‘The personal is political.’ Speaking as someone who has spent the entirety of the COVID-crisis working in elderly care, this book was a joyful revelation to flip through, and should be considered critical reading by anyone impacted by aging.

Carroll Estes has a long and distinguished career in both academia and activism. She is professor emerita of Sociology at the University of California, San Francisco. It was there that she founded the Institute for Health and Aging. She has written numerous books and articles on the politics of aging, including the co-authored The Long Term Care Crisis, which was a 1994 Most Important Book (Choice Magazine). She is also the recipient of numerous academic honors, and is the former president of The Gerontological Society of America (GSA), the American Society on Aging (ASA) and the Association for Gerontology in Higher Education (AGHE).

Nicholas DiCarlo writes about aging and social policy at the Institute for Health and Aging at the University of California, San Francisco. They have a Masters of Social Work, and a private psychotherapy practice in Oakland.

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Leon S. Brenner, "The Autistic Subject: On the Threshold of Language" (Palgrave Macmillan, 2020)

Wed, 17 Feb 2021 09:00:00 -0000

Leon Brenner's The Autistic Subject: On the Threshold of Language (Palgrave Macmillan, 2020) makes a forceful case for the relevance of Lacanian psychoanalysis in the understanding and treatment of autism. Refusing both cognitive and identitarian approaches to the topic, Brenner rigorously theorizes autism as a unique mode of subjectivity and relation to language that sits alongside the classical Freudian structures of psychosis, neurosis, and perversion. In this interview, Brenner dispels misconceptions around psychoanalysis "blaming the mother," as we explore his conceptualisation of autistic subjectivity alongside clinical examples.

Jordan Osserman is a postdoctoral research fellow and psychoanalyst in training in London. He can be reached at jordan.osserman@gmail.com.

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Eben Kirksey, "The Mutant Project: Inside the Global Race to Genetically Modify Humans" (St. Martin's Press, 2020)

Wed, 23 Dec 2020 09:00:00 -0000

In The Mutant Project: Inside the Global Race to Genetically Modify Humans (St. Martin's Press, 2020), anthropologist Eben Kirksey visits the frontiers of genetics, medicine, and technology to ask: Whose values are guiding gene editing experiments? And what does this new era of scientific inquiry mean for the future of the human species?

At a conference in Hong Kong in November 2018, Dr. He Jiankui announced that he had created the first genetically modified babies—twin girls named Lulu and Nana—sending shockwaves around the world. A year later, a Chinese court sentenced Dr. He to three years in prison for “illegal medical practice.”

As scientists elsewhere start to catch up with China’s vast genetic research program, gene editing is fueling an innovation economy that threatens to widen racial and economic inequality. Fundamental questions about science, health, and social justice are at stake: Who gets access to gene editing technologies? As countries loosen regulations around the globe, from the U.S. to Indonesia, can we shape research agendas to promote an ethical and fair society?

Eben Kirksey takes us on a groundbreaking journey to meet the key scientists, lobbyists, and entrepreneurs who are bringing cutting-edge genetic engineering tools like CRISPR to your local clinic. He also ventures beyond the scientific echo chamber, talking to disabled scholars, doctors, hackers, chronically-ill patients, and activists who have alternative visions of a genetically modified future for humanity.

The Mutant Project empowers us to ask the right questions, uncover the truth, and navigate this brave new world.

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Salih Can Açıksöz, "Sacrificial Limbs: Masculinity, Disability, and Political Violence in Turkey" (U California Press, 2019)

Tue, 22 Dec 2020 09:00:00 -0000

Sacrificial Limbs: Masculinity, Disability, and Political Violence in Turkey (University of California Press, 2020) is an exploration of “the ways in which . . .veterans’ gendered and classed experiences of warfare and disability are hardened into politics . . .how self, community, and the world-making practices of disabled veterans get tangled up with ultranationalist politics in contemporary Turkey.” Drawing on extensive interviews and participant observations, anthropologist Salih Can Açıksöz traces the experiences of veterans of Turkey’s ongoing counter-guerilla warfare in the country’s predominantly Kurdish eastern region. In Turkey, military service is mandatory, part of a “heteropatriarchal contract” between men and the state. Injury in wartime confers on veterans the status of gazi, meaning both “wounded soldier” and “holy warrior.” Yet military “operations” in southeast Turkey are not officially recognized as war, and disabling injuries in Turkey’s “deeply ableist society” deny veterans the implicit rewards of their gendered contract with the state. Therefore, since the 1990s, disabled veterans have organized to demand the state honor its debts. In his book, Professor Açıksöz shows the different forms these organizations take, as well as the ways in which veterans' groups became drawn into far-right political movements during the early 2000s.

Reuben Silverman is a PhD candidate at University of California, San Diego

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Matthew J. Wolf-Meyer, "Unraveling: Remaking Personhood in a Neurodiverse Age" (U Minnesota Press, 2020)

Thu, 17 Dec 2020 09:00:00 -0000

Twentieth-century neuroscience fixed the brain as the basis of consciousness, the self, identity, individuality, even life itself, obscuring the fundamental relationships between bodies and the worlds that they inhabit. In Unraveling: Remaking Personhood in a Neurodiverse Age (University of Minnesota Press, 2020), Matthew J. Wolf-Meyer draws on narratives of family and individual experiences with neurological disorders, paired with texts by neuroscientists and psychiatrists, to decenter the brain and expose the ableist biases in the dominant thinking about personhood.

Unraveling articulates a novel cybernetic theory of subjectivity in which the nervous system is connected to the world it inhabits rather than being walled off inside the body, moving beyond neuroscientific, symbolic, and materialist approaches to the self to focus instead on such concepts as animation, modularity, and facilitation. It does so through close readings of memoirs by individuals who lost their hearing or developed trauma-induced aphasia, as well as family members of people diagnosed as autistic--texts that rethink modes of subjectivity through experiences with communication, caregiving, and the demands of everyday life.

Arguing for a radical antinormative bioethics, Unraveling shifts the discourse on neurological disorders from such value-laden concepts as "quality of life" to develop an inclusive model of personhood that honors disability experiences and reconceptualizes the category of the human in all of its social, technological, and environmental contexts.

Claire Clark is a medical educator, historian of medicine, and associate professor in the University of Kentucky’s College of Medicine. She teaches and writes about health behavior in historical context.

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O. Carter Snead, "What It Means to Be Human: The Case for the Body in Public Bioethics" (Harvard UP, 2020)

Wed, 09 Dec 2020 09:00:00 -0000

At first glance, the term “expressive individualism” seems benign enough. After all, people throughout the Western world value their personal freedom and the liberty to make crucial life decisions such as whether to have children and how and when they wish to die. What could possibly be wrong with the idea that everyone should be in control of his or her own body and fate to the greatest extent possible and with the least intrusion by either the state or “outdated” social mores?

But there is a dark side to expressive individualism when one enters the realm of public bioethics. In his 2020 book What It Means to Be Human: The Case for the Body in Public Bioethics (Harvard University Press, 2020), O. Carter Snead defines for us what the term “public bioethics” encompasses and provides a much-needed genealogy of the field.

He profiles key players in many of the most momentous bioethics-related developments of the post-WWII era from physicians such as Henry Knowles Beecher to jurists like Harry Blackmun and influential scholars in fields such as philosophy and sociology like Alasdair MacIntyre, Charles Taylor and Robert Bellah.

Snead chronicles how the field of bioethics came to be shaped by shocking revelations of cases of inhumanity many of which are well-known (such as the infamous Tuskegee Syphilis Study) but many of which are rarely discussed such as medical experiments performed on near-term alive aborted babies. Such cases shocked the public and led to legislation creating commissions and other bodies designed to prevent such horrors.

But Snead argues that much of the action on the public policy front failed for multiple reasons and left vulnerable groups (e.g., the aged, the cognitively disabled, the unborn) outside a legal regime built upon the precepts of expressive individualism. And even those who were supposedly able to express their wishes were often harmed by the expressive individualism paradigm and its legal framework. Snead gives examples of the many actors in the area of assisted reproduction and assisted suicide whose rights can be trampled in the name of a notion of personal liberty that does not account for changes of mind. He also demonstrates that regulation and oversight was often, for all intents and purposes, absent in many cases.

Snead’s book is a clarion call for what he calls “remembering the body.” This is an important book for anyone who may at some point become ill or disabled or who will end up caring for someone who is. That is, it is a book for everyone. It is by a leading scholar, but its readership is anyone with a body and who loves other people—or at least has some control over them.

Give a listen.

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Rebekah Taussig, "Sitting Pretty: The View from My Ordinary Resilient Disabled Body" (HarperOne, 2020)

Fri, 06 Nov 2020 09:00:00 -0000

A memoir-in-essays from disability advocate and creator of the Instagram account @sitting_pretty Rebekah Taussig, processing a lifetime of memories to paint a beautiful, nuanced portrait of a body that looks and moves differently than most. Growing up as a paralyzed girl during the 90s and early 2000s, Taussig only saw disability depicted as something monstrous (The Hunchback of Notre Dame), inspirational (Helen Keller), or angelic (Forrest Gump). None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.

Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life.

Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty: The View from My Ordinary Resilient Disabled Body (HarperOne, 2020) challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

Dr. Christina Gessler’s background is in American women’s history, and literature. She specializes in the diaries written by rural women in the 19th century. In seeking the extraordinary in the ordinary, Gessler writes the histories of largely unknown women, poems about small relatable moments, and takes many, many photos in nature.

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Stefanie Hunt-Kennedy, "Between Fitness and Death: Disability and Slavery in the Caribbean" (U Illinois Press, 2020)

Fri, 06 Nov 2020 09:00:00 -0000

Long before the English became involved in the African slave trade, they imagined Africans as monstrous and deformed beings. The English drew on pre-existing European ideas about monstrosity and deformity to argue that Africans were a monstrous race, suspended between human and animal, and as such only fit for servitude. Joining blackness to disability transformed English ideas about defective bodies and minds. It also influenced understandings of race and ability even as it shaped the embodied reality of people enslaved in the British Caribbean.

Dr. Stefanie Hunt-Kennedy provides a three-pronged analysis of disability in the context of Atlantic slavery. First, she examines the connections of enslavement and representations of disability and the parallel development of English anti-black racism. From there, she moves from realms of representation to reality in order to illuminate the physical, emotional, and psychological impairments inflicted by slavery and endured by the enslaved. Finally, she looks at slave law as a system of enforced disablement.

Audacious and powerful, Between Fitness and Death: Disability and Slavery in the Caribbean (University of Illinois Press, 2020) is a groundbreaking journey into the entwined histories of racism and ableism.

Adam McNeil is a third-year PhD Student in the Department of History at Rutgers University. McNeil regularly contributes to the academic blogs Black Perspectives and The Junto.

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David Davis, "Wheels of Courage: How Paralyzed Veterans from World War II Invented Wheelchair Sports" (Center Street, 2020)

Wed, 28 Oct 2020 08:00:00 -0000

Out of the carnage of World War II comes an unforgettable tale about defying the odds and finding hope in the most harrowing of circumstances.

Wheels of Courage: How Paralyzed Veterans from World War II Invented Wheelchair Sports, Fought for Disability Rights, and Inspired a Nation (Center Street, 2020) tells the stirring story of the soldiers, sailors, and marines who were paralyzed on the battlefield during World War II-at the Battle of the Bulge, on the island of Okinawa, inside Japanese POW camps-only to return to a world unused to dealing with their traumatic injuries. Doctors considered paraplegics to be "dead-enders" and "no-hopers," with the life expectancy of about a year. Societal stigma was so ingrained that playing sports was considered out-of-bounds for so-called "crippled bodies."

But servicemen like Johnny Winterholler, a standout athlete from Wyoming before he was captured on Corregidor, and Stan Den Adel, shot in the back just days before the peace treaty ending the war was signed, refused to waste away in their hospital beds. Thanks to medical advances and the dedication of innovative physicians and rehabilitation coaches, they asserted their right to a life without limitations. The paralyzed veterans formed the first wheelchair basketball teams, and soon the Rolling Devils, the Flying Wheels, and the Gizz Kids were barnstorming the nation and filling arenas with cheering, incredulous fans. The wounded-warriors-turned-playmakers were joined by their British counterparts, led by the indomitable Dr. Ludwig Guttmann. Together, they triggered the birth of the Paralympic Games and opened the gymnasium doors to those with other disabilities, including survivors of the polio epidemic in the 1950s.

Much as Jackie Robinson's breakthrough into the major leagues served as an opening salvo in the civil rights movement, these athletes helped jump-start a global movement about human adaptability. Their unlikely heroics on the court showed the world that it is ability, not disability, that matters most. Off the court, their push for equal rights led to dramatic changes in how civilized societies treat individuals with disabilities: from kneeling buses and curb cutouts to the Americans with Disabilities Act of 1990. Their saga is yet another lasting legacy of the Greatest Generation, one that has been long overlooked.

Drawing on the veterans' own words, stories, and memories about this pioneering era, David Davis has crafted a narrative of survival, resilience, and triumph for sports fans and athletes, history buffs and military veterans, and people with and without disabilities.

Paul Knepper was born and raised in New York and currently resides in Austin. His first book, The Knicks of the Nineties: Ewing, Oakley, Starks and the Brawlers Who Almost Won It All is available on Amazon and other sites. You can reach Paul at paulknepper@gmail.com and follow him on Twitter @paulieknep.

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Federico R. Waitoller, "Excluded by Choice: Urban Students with Disabilities in the Education Marketplace" (Teachers College Press, 2020)

Wed, 09 Sep 2020 08:00:00 -0000

In this episode, I speak with Federico R. Waitoller about his book, Excluded by Choice: Urban Students with Disabilities in the Education Marketplace (Teachers College Press). This book highlights the challenges faced by students of color who have special needs and their parents who evaluate their educational options.

We discuss the services to which students with disabilities are entitled, how they are manifested in neighborhood and charter schools, and how they may be in tension with practices sometimes found in schools marketing themselves based on high test scores and college enrollment numbers. You can follow him on Twitter at @Waitollerf.

His recommended books included the following:

Ghosts in the Schoolyard: Racism and School Closings on Chicago's South Side by Eve L. Ewing (University of Chicago Press, 2018)
Culturally Sustaining Pedagogies: Teaching and Learning for Justice in a Changing World by Djano Paris and H. Samy Alim (Teachers College Press, 2017)
Savage Inequalities: Children in America's Schools by Jonathan Kozol (Broadway Books, 2012)

Federico R. Waitoller is an associate professor in the department of special education at the University of Illinois at Chicago.

Trevor Mattea is an educational consultant and speaker. His areas of expertise include deeper learning, parent involvement, project-based learning, and technology integration. He can be reached by email at tsmattea@pm.me or on Twitter at @tsmattea.

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Natan M. Meir, "Stepchildren of the Shtetl" (Stanford UP, 2020)

Wed, 19 Aug 2020 08:00:00 -0000

Memoirs of Jewish life in the east European shtetl often recall the hekdesh (town poorhouse) and its residents: beggars, madmen and madwomen, disabled people, and poor orphans. Stepchildren of the Shtetl: The Destitute, Disabled, and Mad of Jewish Eastern Europe, 1800-1939 (Stanford University Press, 2020) tells the story of these marginalized figures from the dawn of modernity to the eve of the Holocaust.

Combining archival research with analysis of literary, cultural, and religious texts, Natan M. Meir recovers the lived experience of Jewish society's outcasts and reveals the central role that they came to play in the drama of modernization. Those on the margins were often made to bear the burden of the nation as a whole, whether as scapegoats in moments of crisis or as symbols of degeneration, ripe for transformation by reformers, philanthropists, and nationalists.

Shining a light into the darkest corners of Jewish society in eastern Europe―from the often squalid poorhouse of the shtetl to the slums and insane asylums of Warsaw and Odessa, from the conscription of poor orphans during the reign of Nicholas I to the cholera wedding, a magical ritual in which an epidemic was halted by marrying outcasts to each other in the town cemetery―Stepchildren of the Shtetl reconsiders the place of the lowliest members of an already stigmatized minority.

Natan M. Meir is the Lorry I. Lokey Professor of Judaic Studies in the Harold Schnitzer Family Program in Judaic Studies at Portland State University. He also serves as a museum consultant and leads study tours of Eastern Europe with Ayelet Tours.

503-828-5303, meir@pdx.edu

Steven Seegel is a Professor of History at the University of Northern Colorado

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Telory Arendell, "The Autistic Stage: How Cognitive Disability Changed 20th-Century Performance" (Sense Publishers, 2015)

Fri, 24 Jul 2020 08:00:00 -0000

In The Autistic Stage: How Cognitive Disability Changed 20th-Century Performance (Sense Publishers, 2015) (Sense Publishers, 2015), Telory Arendell creates a revolutionary fusion of disability studies and performance studies. Arendell touches on the work of autistic poet and librettist Christopher Knowles, portrayal of autism in film, and the use of theatre as a therapy for those on the autism spectrum. In so doing she overturns ableist assumptions about autistics’ inability to connect with others or communicate effectively, showing how an autistic sensibility can actually be deeply attuned to theatrical modes of play and storytelling.

Andy Boyd is a playwright based in Brooklyn, New York. He is a graduate of the playwriting MFA program at Columbia University, Harvard University, and the Arizona School for the Arts. His plays have been produced, developed, or presented at IRT, Pipeline Theatre Company, The Gingold Group, Dixon Place, Roundabout Theatre, Epic Theatre Company, Out Loud Theatre, Naked Theatre Company, Contemporary Theatre of Rhode Island, and The Trunk Space. He is currently working on a series of 50 plays about the 50 U.S. states. His website is AndyJBoyd.com, and he can be reached at andyjamesboyd@gmail.com.

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Recording Global Diplomacy: Contextualizing Perspectives

Wed, 15 Jul 2020 08:00:00 -0000

In 1999, the Organization of African Unity cited dissatisfaction with the solely “global” approach that the UN had applied in their International Decade for Disabled Persons (1983–1992), and declared an African Decade of Persons with Disabilities (1999–2009) to explore “local” approaches.

Was the UN’s approach truly detached from the ground reality? In this podcast, Sam De Schutter discusses his award-winning paper “A Global Approach to Local Problems? How to Write a Longer, Deeper, and Wider History of the International Year of Disabled Persons in Kenya” published in Brill’s Diplomatica, where he argues that to get to the truth historians must go beyond the global-local dichotomy. Sam de Schutter won the Brill/Diplomatica Mattingly Prize 2019 for this paper.

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Jay Timothy Dolmage, "Disabled Upon Arrival: Eugenics, Immigration, and the Construction of Race" (OSU Press, 2018)

Mon, 08 Jun 2020 08:00:00 -0000

On this episode of the New Books Network, Lee Pierce (s/t) interviews Jay Timothy Dolmage of the University of Waterloo on the new book Disabled Upon Arrival: Eugenics, Immigration, and the Construction of Race and Disability (Ohio State University Press, 2018), a compelling examination of the spaces, technologies, and discourses of immigration restriction during the peak period of North American immigration in the early twentieth century.

In North America, immigration has never been about immigration. That was true in the early twentieth century when anti-immigrant rhetoric led to draconian crackdowns on the movement of bodies, and it is true today as new measures seek to construct migrants as dangerous and undesirable.

Through careful archival research and consideration of the larger ideologies of racialization and xenophobia, Disabled Upon Arrival links anti-immigration rhetoric to eugenics—the flawed “science” of controlling human population based on racist and ableist ideas about bodily values. Dolmage casts an enlightening perspective on immigration restriction, showing how eugenic ideas about the value of bodies have never really gone away and revealed how such ideas and attitudes continue to cast groups and individuals as disabled upon arrival.

Thanks to OSU Press for providing disabled Upon Arrival for free through the OSU Knowledge Bank (may require in Institutional subscription). Click here to access a PDF of disabled upon arrival. You can also find an open access version of Jay’s previous book, Academic Ableism, courtesy of the University of Waterloo Arts Research Office. Click here to access Academic Ableism. Connect with Jay on Twitter @jaydolmage Connect with your host,

Lee Pierce, on Twitter, Instagram, and Facebook @rhetoriclee for interview previews, the best book selfies, and new episode alerts.

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Anna Arstein-Kerslake, "Restoring Voice to People with Cognitive Disabilities: Realizing the Right to Equal Recognition Before the Law" (Cambridge UP, 2017)

Mon, 06 Apr 2020 08:00:00 -0000

The right to decision making is important for all people. It allows us to choose how to we our lives – both on a daily basis, and also in terms of how we wish to express ourselves, to live in accordance with our values and desires.

However, the right to make decisions has been, and continues to be, routinely denied to people with disabilities – sometimes by family members and carers, or by institutions and courts.

In this conversation, Anna Arstein-Kerslake discusses situations where people with cognitive impairments are unjustifiably denied the right to make their own choices. She shares her own experiences to demonstrate how this unjustifiably and unnecessarily discriminates against people with disabilities.

But it need not be this way; both in Restoring Voice to the People with Cognitive Disabilities (Cambridge University Press, 2017), and in this episode, Anna takes us through examples of how bringing greater equality for people with cognitive impairments can be of benefit to the entire community. Her book provides a roadmap for the future to bring greater equality for all.

Jane Richards is a doctoral candidate in Human Rights Law at the University of Hong Kong. Her research interests include disability, equality and criminal law. You can find her on twitter @JaneRichardsHK where she avidly follows the Hong Kong protests.

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Elizabeth A. Wheeler, "HandiLand: The Crippest Place on Earth" (U Michigan Press, 2019)

Mon, 23 Mar 2020 08:00:00 -0000

Throughout her new book, HandiLand: The Crippest Place on Earth (University of Michigan Press 2019), Elizabeth A. Wheeler uses a fictional place called HandiLand as a yardstick for measuring how far American society has progressed toward social justice and how much remains to be done. In a rich array of chapters, Wheeler considers the new prominence of youth with disabilities in contemporary young adult and children’s literature. From these and other sources, she derives principles for understanding social justice from the everyday experiences of adults and families with disabilities, including her own. Wheeler intersperses literary analysis with personal memoir in an effort to fashion tool kits for those whose “work, ideas, and hands touch young people with disabilities,” which is all of us.

Carrie Lane is a Professor of American Studies at California State University, Fullerton and author of A Company of One: Insecurity, Independence, and the New World of White-Collar Unemployment. Her research concerns the changing nature of work in the contemporary U.S. She is currently writing a book on the professional organizing industry. To contact her or to suggest a recent title, email clane@fullerton.edu.

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Kimberly Dark, "Fat, Pretty, and Soon to Be Old: A Makeover for Self and Society" (AK Press, 2019)

Wed, 26 Feb 2020 09:00:00 -0000

In her new book Fat, Pretty, and Soon to Be Old: A Makeover for Self and Society (AK Press 2019), sociologist and storyteller Kimberly Dark considers what it means to look a certain way. Integrating memoir with cultural critique, Dark describes her experience navigating the world as a fat, queer, white-privileged, gender-conforming, eventually disabled, and inevitably aging “girl with a pretty face.” Her essays take on self-improvement, self-acceptance, sexual attraction, language, aging, queer visibility, fashion, family, femininity, feminism, yoga culture, airplane seats, and the vilifying of fatness in the name of good health, among other compelling topics. Along the way, Dark edges readers toward a deeper understanding of how privileged (and stigmatized) appearances function in everyday life, and how the architecture of the social world constrains us all.

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David Pettinicchio, "Politics of Empowerment: Disability Rights and the Cycle of American Policy Reform" (Stanford UP, 2019)

Thu, 26 Dec 2019 09:00:00 -0000

David Pettinicchio has written Politics of Empowerment: Disability Rights and the Cycle of American Policy Reform (Stanford University Press, 2019). He is assistant professor of sociology at the University of Toronto.

In Politics of Empowerment, David Pettinicchio offers a history of the political development of disability rights in the United States. Since the 1920s, policy makers have framed and re-framed the obligations of the federal government to those with disabilities. Over time, disability rights emerged, establishing a set of guarantees for public accommodations. At the same time, disability policies were challenged as too expensive and unfeasible, a new threat to the disability community. Pettinicchio follows these ebbs and flows by integrating sociological and political science theories on policy change, social movements, and interest groups.

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Sarah Handley-Cousins, "Bodies in Blue: Disability in the Civil War North" (U Georgia Press, 2019)

Thu, 05 Dec 2019 09:00:00 -0000

All wars, in a practical sense, center on the destruction of the human body, and in Bodies in Blue: Disability in the Civil War North (University of Georgia Press, 2019), Sarah Handley-Cousins, a clinical assistant professor at the University at Buffalo, shows how disability was a necessary by-product of the U.S. Civil War. Handley-Cousins argues that disability in the Civil War North extended far past amputations and highlights how wartime disability ranged from the temporary to the chronic, from disease to injury, and encompassed both physical and mental conditions. In Bodies in Blue, Handley-Cousins documents how the realities of living with a disability were at odds with the expectations of manhood. As a result, men who failed to perform the role of wounded warrior could be scrutinized for failing to live up to the ideal of martial masculinity. Importantly, Handley-Cousins challenges scholars to think about Civil War historiography in new ways. More specifically, by examining the lasting mental health implications of the conflict, Handley-Cousins forces us to face how soldiers had to reckon with the Civil War for the rest of their lives.

Chris Babits is an Andrew W. Mellon Engaged Scholar Initiative Postdoctoral Fellow at the University of Texas at Austin. He researches the intersecting histories of medicine, religion, and gender and sexuality and is currently working on his book manuscript about the history of conversion therapy in the United States.

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Zachary Kramer, "Outsiders: Why Difference is the Future of Civil Rights" (Oxford UP, 2019)

Mon, 27 May 2019 08:00:00 -0000

Outsiders: Why Difference is the Future of Civil Rights(Oxford University Press, 2019) by Zachary Kramer (Oxford University Press, 2019) sets forth an imaginative critique of the way that civil rights law currently fulfills its mission. Using stories that lucidly illustrate the gap between the aspiration of civil rights law and the lived reality, Professor Kramer proposes a new approach. Drawing on existing protections for disability and for religious practice, Professor Kramer outlines the way that a right to personality, combined with an accommodation-focused inquiry, could update and refresh our approach to civil rights.

Zachary Kramer is Associate Dean of Faculty, Professor of Law, and Willard H. Pedrick Distinguished Research Scholar at the Sandra Day O'Connor College of Law at Arizona State University.

Künga Tenje is an independent librarian in Virginia.

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Ralph James Savarese, "Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor" (Duke UP, 2018)

Fri, 29 Mar 2019 10:00:00 -0000

From the earliest days of medical research into autism, both psychologists and the general public have characterised those on the autism spectrum as literal-minded, unimaginative and lacking in empathy. While in recent years a fresh emphasis on neurodiversity has served to sweep aside this kind of reductive thinking, many people still view autistic readers as limited in their capacity to engage with literary texts. In his new book See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor (Duke University Press, 2018), educator and author Ralph James Savarese challenges the notion that autistic readers are unable to immerse themselves in figurative language or get lost in imaginative worlds. Instead, Savarese, himself the father of a young autistic man, explores the many diverse and illuminating ways in which neurodivergent readers can engage with literature. From a young reader who identifies with the cetacean “antagonist” of Moby Dick to a woman who provides stunning new insights into Philip K. Dick's Do Androids Dream of Electric Sheep?, See It Feelingly foregrounds the unique perspectives of autistic readers and highlights their inventive approaches to literary analysis. In this podcast, Professor Savarese speaks to Miranda Corcoran about the impetus for this project and his experience working with neurodivergent readers.

Miranda Corcoran is a lecturer in twenty-first-century literature in University College Cork. Her research focuses on Cold-War fiction, science fiction, horror and the gothic. She is currently writing a monograph on witchcraft and adolescence in popular culture. She is a regular contributor to Diabolique and blogs about popular culture here. You can follow her on Twitter @middleagedwitch

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Robin Wallace, "Hearing Beethoven: A Story of Musical Loss and Discovery" (UChicago Press, 2018)

Thu, 07 Feb 2019 22:32:00 -0000

Music lovers and researchers alike have long been fascinated by the story of Ludwig van Beethoven who became profoundly deaf as an adult and could not hear some of his most famous compositions including the Ninth Symphony. Many people have written about Beethoven’s deafness and speculated how he might have been able to compose despite his disability. Robin Wallace, however, is the first musicologist to write about Beethoven’s life and music who has had an intimate experience with deafness. Hearing Beethoven: A Story of Musical Loss and Discovery published by University of Chicago Press in 2018 pairs a new consideration of the effects of Beethoven’s deafness on his life and music with a loving memoir of the last years of Wallace’s first marriage after his wife, Barbara, suddenly lost her hearing. Written for a general audience as well as musicologists, in Hearing Beethoven, Wallace applies what he learned from Barbara’s experiences to Beethoven’s life. Wallace focuses on three main areas: Beethoven’s social life, the technology he used to help him hear speaking voices and music, and his compositional method and music. While providing new insights into Beethoven’s biography and compositions, Wallace also undermines some of the most enduring myths about Beethoven. He reminds us that neither Beethoven nor his wife Barbara overcame the challenges presented by their deafness, instead they strove to find “wholeness by learning to live within them.”

Robin Wallace is a Professor of Musicology in the School of Music at Baylor University. He has published widely on the critical reception of Beethoven’s music including his first book, Beethoven’s Critics: Aesthetic Dilemmas and Resolutions During the Composer’s Lifetime (University of Cambridge Press, 1986). In addition to his scholarly publications, Wallace is the author of an introductory music textbook from Oxford University Press titled Take Note: An Introduction to Music through Active Listening.

Kristen M. Turner, Ph.D. is a lecturer at North Carolina State University in the music department. Her work centers on American musical culture at the turn of the twentieth century and has been published in several journals and essay collections.

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Dagmar Herzog, "Unlearning Eugenics: Sexuality, Reproduction, and Disability in Post-Nazi Europe" (U Wisconsin Press, 2018)

Fri, 25 Jan 2019 11:00:00 -0000

In her new book, Unlearning Eugenics: Sexuality, Reproduction, and Disability in Post-Nazi Europe (University of Wisconsin Press, 2018), Dagmar Herzog examines the relationship between reproductive rights and disability rights in contemporary European history. In a study that appeared in the George L. Mosse Series in Modern European Cultural and Intellectual History, Herzog uncovers much that is unexpected. She analyzes Protestant and Catholic theologians that were pro-choice in the 1960s and 1970s; the ways in which some advocates of liberalized abortion access displayed hostility to the disabled; the current backlash against women’s reproductive rights in Europe fueled in part by activists presenting themselves as anti-eugenics and pro-disability; and the impressive advances in disability rights inspired by submerged, contrapuntal strands within psychoanalysis and Christianity alike. An outstanding contribution to the histories of religion, sexuality, and disability rights, this book is essential reading for anyone interested in post-1945 Europe.

Michael E. O’Sullivan is Associate Professor of History at Marist College where he teaches courses about Modern Europe. He published Disruptive Power: Catholic Women, Miracles, and Politics in Modern Germany, 1918-1965 with University of Toronto Press in 2018.

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Shelley Tremain, “Foucault and Feminist Philosophy of Disability” (U Michigan Press, 2017)

Tue, 11 Sep 2018 10:00:00 -0000

How should we understand disability? In Foucault and Feminist Philosophy of Disability (University of Michigan Press, 2017), Dr. Shelley Tremain explores this complex question from the perspective of feminist philosophy, using the work of Michel Foucault. The book is a fascinating critique of much contemporary philosophy and policy, providing a detailed, but easy to follow overview of key works in feminism and in Foucault’s thought. The book places these discussions in the context of inequalities within academic philosophy itself, drawing attention to the marginalisation of key questions of disability and gender from contemporary philosophy as it is currently organised. Overall the book is important reading not only for disability studies and philosophy, but anyone wanting to understand how society disadvantages difference. You can read more of Dr. Tremain’s work, and key debates on philosophy and disability as part of the Discrimination and Disadvantage blog.

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Julia Miele Rodas, “Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe” (U Michigan Press, 2018)

Mon, 03 Sep 2018 10:00:00 -0000

Ever since the first clinical account of autism was published by Dr. Leo Kanner in 1943, Western culture has tended to mythologise the disorder as impenetrable, non-verbal and characterised by silence. As such, in both medical literature and popular culture, autistic individuals are depicted as incomprehensible and Other, problems to be rectified or puzzles to be solved. In contrast to this view of autism as an inscrutable enigma, Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe (University of Michigan Press, 2018) by Julia Miele Rodas explores the expressive, creative potential of the autist by opening up a host of literary texts to the “possibilities of autism.” Autistic Disturbances is therefore a unique contribution to the growing field of disability studies as it does not simply explore autism from the standard clinical or biographical perspective. Instead, this insightful new study sets out to engage with autistic modes of expression from a literary, cultural and semiotic viewpoint.

Undertaking a comprehensive analysis of a wide range of texts, from Charlotte Bronte’s Villette and Mary Shelley’s Frankenstein to Andy Warhol’s autobiographical writings, Rodas unpacks the unique signifiers of autistic language and explores how autism can be articulated textually. In doing so, Autistic Disturbances seeks to uncover the autistic voice in familiar literary works, emphasising the often overlooked aesthetic and cultural value of autistic modes of communication. In this highly original analysis, Rodas maintains that the aesthetic qualities regularly praised by critics when they manifest in literary texts – repetition, cataloguing, highly-detailed description – are often found in autistic expression, where they are marginalised by clinicians and educators. Rodas, however, demonstrates that these features of autistic expression, these unique cognitive and communicative practices, have also played a major role in shaping some of Western culture’s most treasured literary artifacts.

Over the course of a fascinating interview, Professor Rodas speaks to me about the history of autism, the unique qualities of autistic expression and the intriguing manner in which these expressive forms have manifested in numerous canonical literary texts. Prof. Rodas also discusses the impetus for this revolutionary project and explains how working on this book has shaped not only her research, but also impacted her teaching practice.

Miranda Corcoran received her Ph.D. in 2016 from University College Cork, where she currently teaches American literature. Her research interests include Cold-War literature, genre fiction, literature and psychology, and popular culture. She has published articles on paranoia, literature, and Cold-War popular culture in The Boolean, Americana, and Transverse, and contributed a book chapter on transnational paranoia to the recently published book Atlantic Crossings: Archaeology, Literature, and Spatial Culture. She blogs about literature and popular culture HERE and can also be found on Twitter.

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Sami Schalk, “Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction” (Duke UP, 2018)

Tue, 12 Jun 2018 10:00:00 -0000

What do werewolves, enslaved women and immortal beings have in common? And how can they shed light on contemporary questions of ableism and police brutality? In Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction (Duke University Press, 2018), Sami Schalk argues that black women’s speculative fiction changes the rules of literary and textual interpretation by opening up productive spaces of conversation at the intersection of (dis)ability, race and gender. Schalk undertakes a close reading of a variety of genres of speculative fiction including science fiction and neo-slave narratives by authors such as Octavia Butler, Nalo Hopkinson and N.K. Jemisin. Her book shows the range of black women authors’ exploration and critique of marginalizing social and political structures and their visions for more just, equitable futures.

Sami Schalk is an Assistant Professor of Gender & Women’s Studies at University of Wisconsin-Madison. Her interdisciplinary research focuses broadly on disability, race, and gender in contemporary American literature and culture, especially African American literature, speculative fiction, and women’s literature. She has published on literature, film, and material culture in a variety of peer-reviewed humanities journals.

Annette Joseph-Gabriel is an Assistant Professor of French and Francophone Studies at the University of Michigan, Ann Arbor. Her forthcoming book, Decolonial Citizenship: Black Women’s Narratives of Resistance in the Francophone World examines Caribbean and African women’s literary and political contributions to anti-colonial movements.

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John J. Pitney, “The Politics of Autism: Navigating the Contested Spectrum” (Rowman and Littlefield, 2015)

Tue, 08 May 2018 10:00:00 -0000

Autism as a condition has received much focused attention recently, but less attention has been paid to its politics. It is a condition that necessitates significant accommodations and interventions, which can be difficult for people with autism and their loved ones to obtain, depending on the state of autism public policy. Sociologist John J. Pitney argues that political science needs to more rigorously study autism policy and politics, as he outlines in his book The Politics of Autism: Navigating the Contested Spectrum (Rowman & Littlefield, 2015). In our interview, we explore the evolution of our understanding of autism, how public policy impacts the lives of autistic individuals, and suggestions for future research. For anyone with autism or their loves ones, this interview offers suggestions for meeting important needs and hope for a better future.

John J. Pitney Jr., Ph.D. is the Roy P. Crocker Professor of American Politics at Claremont McKenna College. He is the author of The Art of Political Warfare and the coauthor of several books, including Epic Journey: The 2008 Elections and American Politics as well as After Hope and Change: The 2012 Election and American Politics. In addition to his scholarly work, he has held staff positions in the U.S. Congress and the New York State Legislature. He maintains several blogs, including Autism Policy and Politics.

Eugenio Duarte, Ph.D. is a psychologist and psychoanalyst practicing in New York City and Miami. He treats individuals and couples, with specialties in gender and sexuality, eating and body image, and relationship issues. He is a graduate of the psychoanalytic training program at William Alanson White Institute, where he also chairs their monthly LGBTQ Study Group. He is also a contributing author to the book Introduction to Contemporary Psychoanalysis: Defining Terms and Building Bridges (Routledge, 2018).

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David Wanczyk, “Beep: Inside the Unseen World of Baseball for the Blind” (Swallow Press, 2018)

Thu, 03 May 2018 10:00:00 -0000

We all know baseball as one of America’s fondest pastimes, but did you know there’s a version of the sport designed specifically for the blind? It’s called Beep Ball, and the players, with the exception of the pitcher, are all visually impaired. Founded by the National Beep Ball Association in...

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Aimi Hamraie, “Building Access: Universal Design and the Politics of Disability” (U Minnesota Press, 2017)

Wed, 25 Apr 2018 10:00:00 -0000

The Americans with Disability Act passed in 1990, but it was just one moment in ongoing efforts to craft the meaning and practice of “good design” that put people with disabilities at the center. In their new book, Building Access: Universal Design and the Politics of Disability (University of Minnesota Press, 2017), Aimi Hamraie takes a “sledgehammer to history” in the spirit of one guerrilla activist group that they track in the archives—among many other people, objects, and historical contexts. Hamraie focuses on work around “access-knowledge”—that is, the forms of expertise that were considered legitimate ways of knowing and responding to disability through design. What has counted as legitimate access-knowledge, Hamraie argues, indicates designers’ goals: Was the aim of design to make productive workers, liberal consumers, or structures that materialized a commitment to spacial belonging? Who were the imagined users and how could new political priorities materialize in worlds already built? Answers to these questions made—and continue to remake—our material world and its frictions. Hamraie brings their training in feminist epistemology to never-before-accessed archival materials, along with an array of historical images and documents. The result is a persuasive, beautiful, and intrepidly researched book. Building Access torques received wisdom in disability studies, history of science, and architectural design, and models how to attend to research, writing, and publishing as a material practice.

Hamraie is Assistant Professor at Vanderbilt University’s Center for Medicine, Health & Society, and Director of Vanderbilt’s Critical Design Lab.

This interview was a collective effort among Vanderbilt faculty and graduate students in the course New Approaches to STS. For more information about using NBN interviews as part of pedagogical practice, please email Laura Stark or see the essay “Can New Media Save the Book?” in Contexts (2015).

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Molly Ladd-Taylor, “Fixing the Poor: Eugenic Sterilization and Child Welfare in the Twentieth Century” (Johns Hopkins UP, 2017)

Wed, 28 Mar 2018 10:00:00 -0000

Eugenic sterilization is usually associated with Nazi horrors before and during World War II. But, as Dr. Molly Ladd-Taylor reminds us, it was also practiced in the United States. In her new book Fixing the Poor: Eugenic Sterilization and Child Welfare in the Twentieth Century (Johns Hopkins University Press, 2017),...

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Zoe Wool, “After War: The Weight of Life at Walter Reed” (Duke UP, 2015)

Mon, 29 Jan 2018 11:00:00 -0000

Zoe Wool‘s ethnography of rehabilitation After War: The Weight of Life at Walter Reed (Duke University Press, 2015) describes how soldiers injured in the war on terror are pulled towards a normal and idealized American life (Duke University Press, 2015). She describes how the iconic military hospital orients its patients (mostly men) towards normative masculine domestic ideals in an attempt to assimilate them to ordinary life. By closely following their lives in and out of rehabilitation (clinical and domestic), Wool shows us how impossible and fraught this “ordinary” is as the men subvert and are caught between multiple desires and realities: to be home, whole, ordinary fathers and husbands, heroes and symbols of exceptionalism. The weight of life is carried by these soldiers and veterans who are asked to do so much cultural work in the service of their nation on and off the battlefield.

Zoe Wool is Assistant Professor of Anthropology at Rice University, where her teaching and research includes queer theory, personhood and the body, critical disability studies, science and technology studies, and violence and care.

Dana Greenfield, PhD is a medical anthropologist and an MD candidate at the University of California, San Francisco. Next year, she will begin a residency in pediatrics. Reach her at dana.greenfield@ucsf.edu or on Twitter @DanaGfield.

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Sarah D. Phillips, “Disability and Mobile Citizenship in Postsocialist Ukraine” (Indiana UP, 2010)

Thu, 14 Dec 2017 16:48:00 -0000

In Disability and Mobile Citizenship in Postsocialist Ukraine (Indiana University Press, 2010), Sarah D. Phillips offers a compelling investigation of disability policies and movements in Ukraine after the disintegration of the Soviet Union. Scrupulously studied and researched, the data that the author presents reflect social and political changes that have been taking place in the country. Most importantly, this study is centered around people, around the lives of people who change our perception of life, love, and care and our understanding of self and other. In this regard, Sarah Phillips explores how official policies and informal movements, connected with the framing of the concept of disability, shape the ways people with physical impairments are integrated into social consciousness.

As Sarah Phillips’s study shows, the concept of disability in Ukraine has undergone considerable transformations which were conditioned and triggered by historical circumstances. A particular attention is given to the Soviet period when official terms for the defining of disability became part not only of the Soviet official language but also of Soviet mentality as well. “Invalid”—a term defining a person who has an impairment—was rather often understood as a social stigma, entailing detrimental consequences for the emotional and psychological health of the individual. This “labelling” contributed to the deepening of a gap, separating citizens without impairments and citizens with disabilities.

The current stage of the disability policies in Ukraine is to a large extent shaped by the challenges that were emerging during the Soviet period. As Sarah Phillips convincingly demonstrates, a number of profound changes in terms of the improvement of disability rights movement have taken place. Volunteering initiatives and individual endeavors to recover from injuries and find new ways of social activities considerably re-shaped the understanding of disability. This research recounts personal stories of people who discovered inner strength and stimuli to re-define their lives after severe injuries. When recovering, they do not have much to rely on; their will to rediscover joy and love is probably the most significant factor. In spite of positive changes, postsocialist Ukraine still has a number of problems that hinder an effective and productive re-integration of people with disabilities into society. Lack of equipment and accommodations that would facilitate access to public amenities is one of the factors that reduces physical mobility of people with disabilities.

Disability and Mobile Citizenship in Postsocialist Ukraine touches upon the question of how the individual develops their relations with the inside and outside worlds after traumatizing experiences that lead to physical impairments. Drawing attention to the issues and concerns that are central to people experiencing spinal injuries, Sarah Philips invites her readers to think about disability as a phenomenon that breaks boundaries. Of course, medical diagnoses matter and in many cases these are, so to speak, official documents that shape the relationships within communities. But what seems to be at stake is the development of individual and societal relations which are based on inclusiveness that marks the individuals endeavor to reach out to others. In this regards, the title itself—Disability and Mobile Citizenship in Postsocialist Ukraine—encodes a message: disability, in spite of stereotypes and prejudices,

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Leigh Straw, “After the War: Returned Soldiers and the Mental and Physical Scars of World War I” (UWA Publishing, 2017)

Fri, 13 Oct 2017 10:00:00 -0000

In her new book, After the War: Returned Soldiers and the Mental and Physical Scars of World War I (UWA Publishing, 2017), Leigh Straw, a Senior Lecturer in Aboriginal Studies and History at the University of Notre Dame, explores the history of repatriation and return of WWI soldiers to Western Australia. The soldiers’ physical and mental scars, including tuberculosis and what we today call PTSD, did not end with the armistice, as soldiers and their families struggled with the consequences of wartime trauma well into the 1920s.

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Gareth M. Thomas, “Down’s Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic” (Routledge, 2017)

Tue, 15 Aug 2017 10:00:00 -0000

Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Gareth M. Thomas‘ Down’s Syndrome and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic (Routledge, 2017) explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Downs Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Downs syndrome screening is downgraded and subsequently stabilised as a routine part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Downs syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood.

Nivedita Kar is a student at the University of Southern California, having graduated from UCLA with a double major in Anthropology and Statistics and a masters degree from Northwestern University in biostatistics and epidemiology. She is immersed in the realm of academia and medicine, she hopes to be one of the rare few who aim to bridge the gap between clinical literacy and statistical methods.

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Elizabeth Barnes, “The Minority Body: A Theory of Disability” (Oxford UP, 2016)

Tue, 03 Jan 2017 11:21:00 -0000

We are all familiar with the idea that some persons are disabled. But what is disability? What makes it such that a condition–physical, cognitive, psychological–is a disability, rather than, say, a disease or illness? Is disability always and intrinsically bad? Are disabilities things to be cured? Might disabilities be merely ways of being different? And what role should the testimony and experiences of disabled persons play in addressing these questions?

In The Minority Body: A Theory of Disability (Oxford University Press, 2016) Elizabeth Barnes argues that, at least for a range of physical conditions characterized as disabilities, disabilities are merely ways in which bodies can be different, not ways of their being intrinsically badly off. She argues that this view of disability as mere difference has important implications for broader moral and social issues concerning disabled persons; she also argues that her view is better able to respect the experiences and testimony of disabled persons.

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Claudia Malacrida, “A Special Hell: Institutional Life in Albertas Eugenic Years” (U of Toronto Press, 2015)

Thu, 29 Dec 2016 17:17:00 -0000

In A Special Hell: Institutional Life in Alberta’s Eugenic Years (University of Toronto Press, 2015), Claudia Malacrida explores the practices of the Michener Center in Red Deer, Northern Alberta, to uncover a close relationship between the institutionalization of persons with disabilities and eugenics. Canadian province of Alberta was infamous for its eugenics program, which lasted until the 1970s with a significant number of people being involuntary sterilized. Malacrida has opened many important questions including the normalization of eugenics, gender aspect of eugenics, social exclusion, dehumanization, violence, and loss of identity of the inmates. During this interview we have talked about ideological underpinnings of eugenics program, horror practices of the Michener Center, and about struggles of the inmates to cope with daily violence and neglect.

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Carol Gignoux, “Your Innovator Brain: The Truth About ADHD” (Balboa Press, 2016)

Fri, 26 Aug 2016 14:12:00 -0000

What exactly is ADHD, and is it time to update our ideas about it? In her new book, Your Innovator Brain: The Truth About ADHD (Balboa Press, 2016), Carol Gignoux turns our ideas about Attention Deficit Hyperactivity Disorder on their head and introduces a strengths-based rather than deficits-based perspective on this brain type.

In her forty-plus years coaching individuals with ADHD, Gignoux has witnessed how ADHD stigma stymies these individuals’ creativity and self-esteem. They often adopt views of themselves predominated by what they can’t do rather than what they can. But these “innovators,” as she calls them, have unique capacities for creative problem-solving and productive risk-taking that others often envy. Look no further than Steve Jobs, Pablo Picasso, and Jonas Salk–innovators whose unique brain type helped them make extraordinary contributions to modern society. To make best use of their gifts, innovators need help with their very real limitations and greater understanding and appreciation for their assets. As she explains in our interview, Gignoux has made it her mission to help innovators find such understanding and support. In her book, she advances a paradigm shift in our conceptions of ADHD and outlines specific strategies for dealing with day-to-day challenges. This celebratory and useful first book from a decades-long advocate is a long-awaited update to our long-standing ideas about these unique individuals.

I spoke with Gignoux about her book and her coaching experiences with individuals and their loved ones. I hope you enjoy the interview.

Eugenio Duarte, Ph.D. is a licensed psychologist and psychoanalyst practicing in New York City. He treats individuals and couples, with specialties in LGBTQ issues, eating and body image problems, and working with cultural minorities.

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John M. Kinder, “Paying with Their Bodies: American War and the Problem of the Disabled Veteran” (U of Chicago Press, 2015)

Fri, 18 Dec 2015 18:59:00 -0000

John Kinder brings to life the challenges and problems faced by the disabled veteran in American history from the Civil War to the current day in his evocative book, Paying with Their Bodies: American War and the Problem of the Disabled Veteran (University of Chicago Press, 2015). Considered by many...

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Katie Ellis, “Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance” (Ashgate, 2015)

Sun, 08 Nov 2015 20:13:00 -0000

Popular culture has been transformed in its attitudes towards disability, as representations across media forms continues to respond to the contemporary politics of disability. In Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance (Ashgate, 2015), Katie Ellis, a Senior Research Fellow at Curtin University, uses critical perspectives from disability studies to both challenge and celebrate the place of disability in popular culture. The book thinks through ideas of beauty, the role of children’s toys, representations in television and music, as well as science fiction and sport. Alongside the range of sites of disability and popular culture, the book closes with a case study of social media and the limits of inspirational images. The book is essential reading for cultural studies scholars, but raises important questions for a general readership.

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Andrea Louise Campbell, “Trapped in America’s Safety Net: One Family’s Struggle” (University of Chicago Press, 2014)

Mon, 13 Oct 2014 14:12:00 -0000

Andrea Louise Campbell is the author of Trapped in America’s Safety Net: One Family’s Struggle (University of Chicago Press, 2014). Campbell is professor of political science at the Massachusetts Institute of Technology.

Trapped in America’s Safety Net sheds light on the reality of means-tested programs in the United States. Following an accident that left her sister-in-law paralyzed, Campbell sees the vast array of federal and California state assistance programs up close. The book highlights the peculiar aspects of these programs, including the burden of asset tests that compel disabled Americans – and others receiving benefits – to liquidate assets and prevents them from saving for the future. The book is at once deeply personal, but also a great overview of how social policy actually works and often fails.

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David Wright, “Downs: The History of a Disability” (Oxford UP, 2011)

Tue, 30 Sep 2014 13:00:00 -0000

David Wright‘s 2011 book Downs: The History of a Disability (Oxford University Press, 2011), offers readers a history that stretches far beyond the strictly defined genetic disorder that is its namesake. Wright shows us how the condition that came to be known as Down’s syndrome has as much to do with the social history of what was called ‘idiocy’ in Early Modern times and reform movements to integrate the disabled beginning in the 1960s as it does with the rise of asylums or the disputed discovery of “trisomie vingt-et-un.” Even the legacy of the condition’s name is a telling narrative about the modernization of medicine, from the use of the term ‘mongoloid’ to justify the (progressive for the time) anthropological theory of racial reversion to debates over whether to rename the disease in honor of John Langdon Down or place it within a more rigid taxonomy of congenital mental disorders. On their own, all of these stories are compelling windows into different dimensions of medicine, and as a whole they comprise a book that shows readers just how contested the process of ‘medicalizing’ a condition has always been.

The book’s chapters progress both chronologically and thematically. We begin with the legal definition of idiocy in the English Common Law as a way for the state to regulate the inheritance of property, and a glance at different contemporary philosophical understandings of mental handicap. Then, Wright discusses John Langdon Down’s work at the Earlswood Asylum and the influence of both education reforms and genetic studies on the definition of mental handicap. Proceeding through JÃ©rÃ´me Lejeune’s disputed discovery of trisomy 21 and the role of genetic screening in abortion debates, the book concludes by discussing how social movements in the late twentieth century have profoundly affected the ethical and political dimensions of Down’s syndrome. Winner of the British Society for the History of Science’s 2013 Dingle Prize, awarded biennially to a book exemplifying critical focus and a novel perspective while remaining accessible to the public, Downs is a great read for specialists and non-specialists alike.

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Dale Maharidge, “Bringing Mulligan Home: The Other Side of the Good War” (Public Affairs, 2013)

Wed, 03 Jul 2013 12:24:00 -0000

Dale Maharidge‘s Bringing Mulligan Home: The Other Side of the Good War (PublicAffairs, 2013) is something of a departure from our regular offerings. Normally our authors are established academics specializing in the field of military history. Dale Maharidge, however, is an award-winning journalist who, prior to Bringing Mulligan Home, has had only limited exposure to the subject of the Pacific Theater in World War II. What he does bring however is a personal stake in the topic – his father Steve Maharidge served in the Sixth Marine Division, and took part in the assaults on Guam and Okinawa. As a child and then as a young man, Dale was both enthralled and frightened by his father’s regular accounts of the war – enthralled as a son learning more about his father’s experiences in combat; frightened by the storm of emotions and anger that often accompanied his stories. Inspired to learn more about his father’s service, Dale came to understand how Post-Traumatic Stress and Traumatic Brain Injury shaped his father’s post-war life, as well as that of the dozen other Marines he interviewed who served alongside him.

Though written in a journalistic style, Dale Maharidge reserves the bulk of the text for the personal testimony of his twelve interview subjects. The account they weave spares no word or emotion as it offers a harsh testimony of the power and violence of the Pacific War. The collected narratives present a visceral account of combat that rivals Eugene Sledge’s classic With the Old Breed, while also bearing witness to John Dower’s conclusions in his groundbreaking monograph, War Without Mercy. While the book does occasionally lag, caught up in inconsistencies and missed conclusions, in the larger perspective these flaws are minor. Bringing Mulligan Home captures the ugly, nightmarish side of the Pacific War, but never at the expense of the humanity of his father, or his compatriots (well, there is one exception – but more on that in the interview).

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Neil Smith, et al., “The Signs of a Savant: Language Against the Odds” (Cambridge UP, 2011)

Tue, 15 Nov 2011 18:10:00 -0000

“Every once in a while Nature gives us insight into the human condition by providing us with a unique case whose special properties illumine the species as a whole. Christopher is such an example.”

Christopher has a startling talent for language learning, thrown into sharper relief by his concurrent disabilities. Autistic, apraxic, visuo-spatially impaired, and with a severely low non-verbal IQ, he has been feeding his linguistic fascination by collecting languages and has now mastered more than twenty. Neil Smith and his colleagues have been working with Christopher for over twenty years, and The Signs of a Savant: Language Against the Odds (Cambridge University Press, 2011) is their second to detail their work and Christopher’s progress, following on from The Mind of a Savant, published in 1995.

The book documents Christopher’s experiences of learning British Sign Language. Like other languages, BSL has a full grammatical system on which its vocabulary hangs, but unlike spoken languages, it relies on physical coordination, and the integration of handshapes, arm movements, body postures and facial expressions, all of which pose problems for Christopher.

The results of Christopher’s BSL lessons are analyzed in detail, and the book culminates in a new insights into the nature of the mind and where language fits within the complex system of human cognition.

I talk with Neil Smith about savantism, about sign language and about the mind. He also tells me about his first (accidental) steps in linguistics, how they took him to Africa and back to London, and how he is the only author not only to have published a case study on his own son’s acquisition of languages, but also his grandson’s.

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Jeffrey Reznick, “John Galsworthy and the Disabled Soldiers of the Great War” (Manchester UP, 2009)

Tue, 18 May 2010 16:09:00 -0000

You may not know who John Galsworthy is, but you probably know his work. Who hasn’t seen some production of The Forsyte Saga? Galsworthy was one of the most popular and famous British writers of the early 20th century (the Edwardian Era). He left an enormous body of work, for which he was awarded the Nobel Prize in Literature in 1932. But Galsworthy was also what we might call a “public humanitarian,” that is, he used his high profile and influence in a great, good cause. The focus of his effort was disabled solders returning from World War I. We, of course, are well acquainted with the remarkable destructive power of modern weaponry. Not a week goes by (alas) in which we do not hear about a soldier being wounded by mines, grenades, artillery fire or bombs (often of the “roadside” variety). But we also have come to expect that soldier, no matter how grievously wounded, will receive medical treatment that will stand at least a fighting chance of saving their lives. And indeed, many wounded soldiers do survive incredibly severe injuries and return to our world. The generation that fought and suffered World War I–or as they called it “The Great War”–were really not familiar with any of this. Europeans and Americans of the nineteenth century were surely used to wars, but they were generally short and decided by pivotal battles (Waterloo, Gettysburg, Sedan). But the Great War was different. Millions of men lived for years at the “front” and under the shells. Many died there and many more were wounded. Thanks to advances in medical knowledge (and particularly the discovery of the germ theory of disease), a goodly proportion of the wounded survived. This presented a new problem: How to re-integrate wounded men into society? This became Galsworthy’s cause. The course of his efforts on the part of wounded soldiers is detailed with great skill and care by Jeffrey Reznick in his John Galsworthy and the Disabled Soldiers of the Great War (Manchester UP, 2009). Reznick shows us Galsworthy attempting to create the modern infrastructure of veterans’ care: special hospitals, rehabilitation programs, work-transition agencies and so on. And we get to read Galsworthy’s writing on the subject, both non-fiction and fiction. All this give us–or gave me–a new understanding of Galsworthy’s literary work. Galsworthy was a great man. But as it turned out he was greater than I knew. We should thank Jeff for bringing his good-works to our attention.

Please become a fan of “New Books in History” on Facebook if you haven’t already.

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New Books in Disability Studies

Danielle Bainbridge, "Currencies of Cruelty: Slavery, Freak Shows, and the Performance Archive" (NYU Press, 2026)

Katherine Harvey, "The Medieval Guide to Healthy Living" (Reaktion, 2026)

Doug Crandell, "Twenty-Two Cents an Hour: Disability Rights and the Fight to End Subminimum Wages" (Cornell UP, 2022)

Susannah B. Mintz, "Hypochondria: In Sickness and in Story" (Reaktion, 2026)

Podcast Intellectuals Podcast Panel #1 with Benjamen Walker and Fanny Gribenski

A Light in the Tower: A New Reckoning with Mental Health in Higher Education

J. Logan Smilges, "Crip Negativity" (U of Minnesota Press, 2023)

Arseli Dokumaci, "Activist Affordances: How Disabled People Improvise More Habitable Worlds" (Duke UP, 2023)

Gracen Brilmyer and Lydia Tang eds., "Preserving Disability: Disability and the Archival Profession" (Library Juice Press, 2024)

Eli Clare, "Unfurl: Survivals, Sorrows, and Dreaming" (Duke UP, 2025)

Vanessa Warne, "By Touch Alone: Blindness and Reading in Nineteenth-Century Culture" (U Michigan Press, 2025)

Leon J. Hilton, "Counter-Cartographies: Neurodivergence and the Errancies of Performance" (U Minnesota Press, 2025)

Stacia Kalinoski, "Racing Uphill: Confronting a Life with Epilepsy" ﻿(U Minnesota Press, 2025)

The Social Impact of Automating Translation

Ela Przybylo, "Ungendering Menstruation" (U Minnesota Press, 2025)

Fadi Zaghmout, "The Man of Middling Height" (Syracuse UP, 2025)

Improving Quality of Care for Patients with Limited English

Marc Sapir, "I'll Fly Away: Stories About Amazing Disabled Elders" (2025)

Luanjiao Hu, "Inclusion, Exclusion, Agency, and Advocacy: Experiences of Women With Physical Disabilities in China, With Worldwide Implications" (IAP, 2024)

Erin Pritchard, "Midgetism: The Exploitation and Discrimination of People with Dwarfism" (Routledge, 2023)

David Serlin, "Window Shopping with Helen Keller: Architecture and Disability in Modern Culture" (U Chicago Press, 2025)

Terry Baxter and Libby Coyner-Tsosie, "Stories on Skin: A Librarian's Guide to Tattoos as Personal Archives" (Bloomsbury, 2025)

The Case for ASL Instruction for Hearing Heritage Signers

Jina B. Kim, "Care at the End of the World: Dreaming of Infrastructure in Crip-Of-Color Writing" (Duke UP, 2025)

Mara Mills et al., "How to Be Disabled in a Pandemic" (NYU Press, 2025)

Alisha Ali et al., "Mad Studies Reader: Interdisciplinary Innovations in Mental Health" (Routledge, 2024)

The Audiobook's Century-Long Overnight Success

Shahd Alshammari, "Confetti and Ashes" (2025)

Zhiying Ma, "Between Families and Institutions: Mental Health and Biopolitical Paternalism in Contemporary China" (Duke UP, 2025)

Alexandra F. Morris, "Disability in Ptolemaic Egypt and the Hellenistic World: Plato’s Stepchildren" (Routledge, 2024)

Michael Rembis, "Writing Mad Lives in the Age of the Asylum" (Oxford UP, 2025)

Mary Zaborskis, "Queer Childhoods: Institutional Futures of Indigeneity, Race, and Disability" (NYU Press, 2024)

Whitney Dirks, "Monstrosity, Bodies, and Knowledge in Early Modern England" (Amsterdam UP, 2024)

Disability and the History of Science (Osiris, Vol 36)

Voices Part 3: Dork-O-Phonics

Disabled Ecologies: Lessons From a Wounded Desert

Rachael Litherland and Philly Hare, "People with Dementia at the Heart of Research: Co-Producing Research through The Dementia Enquirers Model" (Jessica Kingsley, 2024)

Johanna Hedva, "How to Tell When We Will Die: On Pain, Disability, and Doom" (Zando-Hillman Grad Books, 2024)

Kids Across the Spectrums: Growing Up Autistic in the Digital Age

Lois Peters Agnew, "Fitter, Happier: The Eugenic Strain in Twentieth-Century Cancer Rhetoric" (U Alabama Press, 2024)

Raquel Velho on Disability, Infrastructure, and London's Public Transport System

Jess Whatcott, "Menace to the Future: A Disability and Queer History of Carceral Eugenics" (Duke UP, 2024)

Elizabeth A. Wahler and Sarah C. Johnson, "Creating a Person-Centered Library: Best Practices for Supporting High-Needs Patrons (Bloomsbury, 2023)

Heather Murray, "Asylum Ways of Seeing: Psychiatric Patients, American Thought and Culture" (U Pennsylvania Press, 2022)

Yoga, Disability, and Animism, with Theo Wildcroft

Ella Houston, "Advertising Disability" (Routledge, 2024)

Sign Language Brokering in Deaf-Hearing Families

Fella Benabed, "Applied Global Health Humanities: Readings in the Global Anglophone Novel" (de Gruyter, 2024)

Patrick McKelvey, "Disability Works: Performance After Rehabilitation" (NYU Press, 2024)

Sasha Warren, "Storming Bedlam: Madness, Mental Health, and Revolt" (Common Notions, 2024)

Catherine Tan, "Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge" (Columbia UP, 2024)

John Thomas Maier, "The Disabled Will: A Theory of Addiction" (Routledge, 2024)

Slava Greenberg, "Animated Film and Disability: Cripping Spectatorship" (Indiana UP, 2023)

Dasha Kiper, "Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain" (Random House, 2023)

Test Subjects

Jessica Leigh Kirkness, "The House with All the Lights on: Three Generations, One Roof, a Language of Light" (Allen & Unwin, 2023)

Faye Ginsburg and Rayna Rapp, "Disability Worlds" (Duke UP, 2024)

Premilla Nadasen, "Care: The Highest Stage of Capitalism" (Haymarket Books, 2023)

Building a More Inclusive Society: Disability and Work in Timor-Leste

Sunaura Taylor, "Disabled Ecologies: Lessons from a Wounded Desert" (U California Press, 2024)

Sony Coráñez Bolton, "Crip Colony: Mestizaje, US Imperialism, and the Queer Politics of Disability in the Philippines" (Duke UP, 2023)

Coreen McGuire, "Measuring Difference, Numbering Normal: Setting the Standards for Disability in the Interwar Period" (Manchester UP, 2020)

Margaret Price, "Crip Spacetime: Access, Failure, and Accountability in Academic Life" (Duke UP, 2024)

Mimi Khúc, "dear elia: Letters from the Asian American Abyss" (Duke UP, 2023)

Marchella Ward, "Blindness and Spectatorship in Ancient and Modern Theatres: Towards New Ways of Looking and Looking Back" (Cambridge UP, 2023)

Aaron J. Jackson, "Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities" (U California Press, 2021)

Matthew Rubery, "Reader's Block: A History of Reading Differences" (Stanford UP, 2022)

Kate Annett-Hitchcock, "The Intersection of Fashion and Disability: A Historical Analysis" (Bloomsbury Visual Arts, 2023)

Skylar Bayer and Gabriela Serrato Marks, "Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias" (Columbia UP, 2023)

Isaac Soon, "A Disabled Apostle: Impairment and Disability in the Letters of Paul" (Oxford UP, 2023)

Julia Watts Belser, "Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole" (Beacon Press, 2023)

Leontina Hormel, "Trailer Park America: Reimagining Working-Class Communities" (Rutgers UP, 2023)

SSEAC Timor Leste Field School: Disability and Work

Meghan Henning, "Hell Hath No Fury: Gender, Disability, and the Invention of Damned Bodies in Early Christian Literature" (Yale UP, 2021)

Kay Wilson, "Mental Health Law: Abolish Or Reform?" (Oxford UP, 2021)

Autism in Children's Literature: A Discussion with Jen Malia

Margaret K. Nelson, "Keeping Family Secrets: Shame and Silence in Memoirs from the 1950s" (NYU Press, 2022)

Alexandre Baril, "Undoing Suicidism: A Trans, Queer, Crip Approach to Rethinking (Assisted) Suicide" (Temple UP, 2023)

Eric B. Elbogen and Nico Verykoukis, "Violence and Mental Illness: Rethinking Risk Factors and Enhancing Public Safety" (NYU Press, 2023)

Stacia Kalinoski, "Racing Uphill: Confronting a Life with Epilepsy" (U Minnesota Press, 2025)