New Books in Disability Studies: Recent Episodes
New Books Network
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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 @JaneRichardsHKLearn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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). 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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). 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
"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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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). Learn more about your ad choices. Visit megaphone.fm/adchoices
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... Learn more about your ad choices. Visit megaphone.fm/adchoices
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). Learn more about your ad choices. Visit megaphone.fm/adchoices
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),... Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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, Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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... Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Jérôme 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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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). Learn more about your ad choices. Visit megaphone.fm/adchoices
“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. Learn more about your ad choices. Visit megaphone.fm/adchoices
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. Learn more about your ad choices. Visit megaphone.fm/adchoices