New Books in Disability Studies

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of his or her own body and fate to the greatest extent possible and with the least intrusion by either the state or “outdated” social mores?But there is a dark side to expressive individualism when one enters the realm of public bioethics.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

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

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

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.eduSteven 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