New Books in Disability Studies

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