New Books in Disability Studies

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