New Books in Disability Studies

The routinization of non-invasive prenatal genetic testing (NIPT) raises urgent questions about disability rights and reproductive justice. Supporters defend NIPT on the grounds that genetic information about the fetus helps would-be parents make better family planning choices. Prenatal Genetic Testing, Abortion, and Disability Justice challenges that assessment by exploring how NIPT can actually constrain pregnant women's options. Prospective parents mustbalance a complicated array of factors, including the familial, social, and financial support they can reasonably expect to receive if they choose to carry a disabled fetus to term and raise after birth, causing many pregnant women to “choose” termination.Focusing on the US, the book explores the intent and effects of prenatal screening in connection to women's bodily autonomy and disability rights, addressing themes at the intersection of genetic medicine, policymaking, critical disabilities studies, and political theory. Knight and Miller shift debates about reprogenetics from bioethics to political practice, as well as thoroughly critiquing the neoliberal state and the eugenic technologies that support it. Providing concrete suggestions for reforming medical practice, welfare policy, and cultural norms surrounding disability, this book highlights sites of necessary reform to envision how prospective parents can make truly free choices about prenatal genetic testing and selection abortion.Amber Knight, Associate Professor of Political Science and Public Administration, University of North Carolina at Charlotte. Joshua Miller, Assistant Teaching Professor of Political Science and Public Administration, University of North Carolina at Charlotte.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

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

The word "glitch" implies an incidental error, as easy to patch up as it is to identify. But what if racism, sexism, and ableism aren't just bugs in mostly functional machinery--what if they're coded into the system itself? In the vein of heavy hitters such as Safiya Umoja Noble, Cathy O'Neil, and Ruha Benjamin, Meredith Broussard demonstrates in More than a Glitch: Confronting Race, Gender, and Ability Bias in Tech (MIT Press, 2023) how neutrality in tech is a myth and why algorithms need to be held accountable.Broussard, a data scientist and one of the few Black female researchers in artificial intelligence, masterfully synthesizes concepts from computer science and sociology. She explores a range of examples: from facial recognition technology trained only to recognize lighter skin tones, to mortgage-approval algorithms that encourage discriminatory lending, to the dangerous feedback loops that arise when medical diagnostic algorithms are trained on insufficiently diverse data. Even when such technologies are designed with good intentions, Broussard shows, fallible humans develop programs that can result in devastating consequences.Broussard argues that the solution isn't to make omnipresent tech more inclusive, but to root out the algorithms that target certain demographics as "other" to begin with. With sweeping implications for fields ranging from jurisprudence to medicine, the ground-breaking insights of More Than a Glitch are essential reading for anyone invested in building a more equitable future. Learn more about your ad choices. Visit megaphone.fm/adchoices

Anna Ott died in the Wisconsin State Hospital for the Insane in 1893. She had enjoyed status and financial success first as a physician's wife and then as the only female doctor in Madison. Throughout her first marriage, attempts to divorce her abusive second husband, and twenty years of institutionalization, Ott determinedly shaped her own life.Kim E. Nielsen explores a life at once irregular and unexceptional. Historical and institutional structures, like her whiteness and laws that liberalized divorce and women's ability to control their property, opened up uncommon possibilities for Ott. Other structures, from domestic violence in the home to rampant sexism and ableism outside of it, remained a part of even affluent women's lives. Money, Marriage, and Madness: The Life of Anna Ott (U Illinois Press, 2020) tells a forgotten story of how the legal and medical cultures of the time shaped one woman--and what her life tells us about power and society in nineteenth century America. Learn more about your ad choices. Visit megaphone.fm/adchoices

Disability activism has fundamentally changed American society for the better--and along with it, the views and practices of many clinical professionals. After 1945, disability self-advocates and family advocates pushed for the inclusion of more positive, inclusive, and sociopolitical perspectives on disability in clinical research, training, and practice. In Disability Dialogues: Advocacy, Science, and Prestige in Postwar Clinical Professions (Johns Hopkins UP, 2022), Andrew J. Hogan highlights the contributions of disabled people--along with their family members and other allies--in changing clinical understandings and approaches to disability.Hogan examines the evolving medical, social, and political engagement of three postwar professions--clinical psychology, pediatrics, and genetic counseling--with disability and disability-related advocacy. Professionals in these fields historically resisted adopting a more inclusive and accepting perspective on people with disabilities primarily due to concerns about professional role, identity, and prestige. In response to the work of disability activists, however, these attitudes gradually began to change.Disability Dialogues provides an important contribution to historical, sociological, and bioethical accounts of disability and clinical professionalization. Moving beyond advocacy alone, Hogan makes the case for why present-day clinical professional fields need to better recruit and support disabled practitioners. Disabled clinicians are uniquely positioned to combine biomedical expertise with their lived experiences of disability and encourage greater tolerance for disabilities among their colleagues, students, and institutions. Learn more about your ad choices. Visit megaphone.fm/adchoices

How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of--and find renewed hope in--surprising expressions of selfhood despite the challenges of cognitive decline.In Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer's Disease (Johns Hopkins University Press, 2022), Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:- understanding the experience of dementia- noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"- perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers- how to communicate optimally and use language effectively- the value of art, poetry, symbols, personalized music, and nature in revealing self-identity- the value of trained "dementia companion" dogsAt a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.Stephen G. Post is the director of the Center for Medical Humanities, Compassionate Care, and Bioethics at the Renaissance School of Medicine at Stony Brook University.Caleb Zakarin is the Assistant Editor of the New Books Network. Learn more about your ad choices. Visit megaphone.fm/adchoices

“Three generations of imbeciles are enough” were the infamous words U.S. Supreme Court Justice Oliver Wendell Holmes Jr. wrote in 1927. In Buck v. Bell, an almost unanimous Court upheld a Virginia law allowing the sterilization of people the state found to be “socially inadequate” and “feebleminded.” This landmark decision allowed the eugenics movement to take full effect, with multiple states passing similar laws. In Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell (Johns Hopkins UP, 2022), Dr. Paul Lombardo unpacks the case of an individual – Carrie Buck – to argue that the case not only represents the collective power of the eugenics movement in the early 20th century but an individual miscarriage of justice. Using extensive archival sources, Dr. Lombardo demonstrates that Carrie Buck was neither a “moral degenerate” or “feeble-minded.” She was a rape victim of sound mind. Her sterilization was based on fraudulent evidence. The powerful eugenics lobby manufactured a case – and a sympathetic court gave them a precedent that justified Carrie Buck’s sterilization – and over 60,000 sterilizations in the following decades.Three Generations, No Imbeciles frames the history of sterilization as essential to understanding contemporary legal fights over birth control and abortion. Does the constitution’s promise of “liberty” include the right to become pregnant or end a pregnancy? Dr. Lombardo’s epilogue and afterward outlines the connections between Buck and modern cases involving abortion, disability rights, and reparations for those sterilized. Originally published in 2008, the book has been updated in 2022 with a terrific epilogue and afterward with an eye towards contemporary events in reproductive politics.Dr. Paul A. Lombardo is Regents’ Professor and Bobby Lee Cook Professor of Law at the Center for Law, Health & Society at Georgia State University. He has published extensively on topics in health law, medico-legal history, and bioethics and is best known for his work on the legal history of the American eugenics movement. His website houses the images and all documents discussed in the podcast including the petition for rehearing created by the National Council of Catholic Men.Daniela Campos served as the editorial assistant for this podcast.Susan Liebell is Dirk Warren '50 Professor of Political Science at Saint Joseph’s University in Philadelphia. Learn more about your ad choices. Visit megaphone.fm/adchoices

Today I talked to Ninon Dubourg about her new book Disabled Clerics in the Late Middle Ages: Un/Suitable for Divine Service? (Amsterdam UP, 2023).The petitions received and the letters sent by the Papal Chancery during the Late Middle Ages attest to the recognition of disability at the highest levels of the medieval Church. These documents acknowledge the existence of physical and/or mental impairments, with the papacy issuing dispensations allowing some supplicants to adapt their clerical missions according to their abilities. A disease, impairment, or old age could prevent both secular and regular clerics from fulfilling the duties of their divine office. Such conditions can, thus, be understood as forms of disability. In these cases, the Papal Chancery bore the responsibility for determining if disabled people were suitable to serve as clerics, with all the rights and duties of divine services. Whilst some petitioners were allowed to enter the clergy, or - in the case of currently serving churchmen - to stay more or less active in their work, others were compelled to resign their position and leave the clergy entirely. Petitions and papal letters lie at intersection of authorized, institutional policy and practical sources chronicling the lived experiences of disabled people in the Middle Ages. As such, they constitute an excellent analytical laboratory in which to study medieval disability in its relation to the papacy as an institution, alongside the impact of official ecclesiastical judgments on disabled lives.A transcript of this interview is available here.Shu Wan is currently matriculated as a doctoral student in history at the University at Buffalo. As a digital and disability historian, he serves in the editorial team of Digital Humanities Quarterly and Nursing Clio. Learn more about your ad choices. Visit megaphone.fm/adchoices

Between 1902 and 1934, the United States confined hundreds of adults and children from dozens of Native nations at the Canton Asylum for Insane Indians, a federal psychiatric hospital in South Dakota. But detention at the Indian Asylum, as families experienced it, was not the beginning or end of the story. For them, Canton Asylum was one of many places of imposed removal and confinement, including reservations, boarding schools, orphanages, and prison-hospitals. Despite the long reach of institutionalization for those forcibly held at the Asylum, the tenacity of relationships extended within and beyond institutional walls.In Committed: Remembering Native Kinship in and Beyond Institutions (UNC Press, 2021), Susan Burch tells the story of the Indigenous people—families, communities, and nations, across generations to the present day—who have experienced the impact of this history. Drawing on oral history interviews, correspondence, material objects, and archival sources, Burch reframes the histories of institutionalized people and the places that held them. Committed expands the boundaries of Native American history, disability studies, and U.S. social and cultural history generally.Susan Burch is a professor of American Studies. Before joining the Middlebury faculty in 2009, she taught at Gallaudet University, King’s College (University of Aberdeen, Scotland), and the Ohio State University. Professor Burch also has worked as a research associate at the Smithsonian National Museum of American History. She earned her BA degree in history and Soviet Studies from Colorado College and her MA and PhD in American and Soviet history from Georgetown University.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

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