New Books in Disability Studies

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

The Intelligence Quotient is a measure of intelligence that has life-or-death consequences. Should we trust it?GUESTAlan Gouddis is a Partner with Sherman & Sterling. He was recognized by The Legal 500 as a “Leading Lawyer” in M&A Litigation Defense in 2021.  This episode was produced by Andrew Middleton  and Liya Rechtman. Learn more about your ad choices. Visit megaphone.fm/adchoices

Black people and people with disabilities in the United States are distinctively disadvantaged in their encounters with the health care system. These groups also share harsh histories of medical experimentation, eugenic sterilizations, and health care discrimination. Yet the similarities in inequities experienced by Black people and disabled people and the harms endured by people who are both Black and disabled have been largely unexplored. To fill this gap, Embodied Injustice: Race, Disability, and Health (Cambridge UP, 2022) uses an interdisciplinary approach, weaving health research with social science, critical approaches, and personal stories to portray the devastating effects of health injustice in America.Author Mary Crossley takes stock of the sometimes-vexed relationship between racial justice and disability rights advocates and interrogates how higher disability prevalence among Black Americans reflects unjust social structures. By suggesting reforms to advance health equity for disabled people, Black people, and disabled Black people, this book lays a crucial foundation for intersectional, cross-movement advocacy to advance health justice in America.Rachel Pagones is an acupuncturist, educator, and author based in Cambridge, England. Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of Queer Voices I talk to Dr. Terry Chase about her book Spoke by Spoke: How a Broken Back and a Broken Bike Led to a WholeHearted Life, released in November 2021 by Push On Press.Spoke by Spoke takes the reader on one woman’s journey to reinvent herself following a hit and run accident which left her back broken, and her bike crumpled by a speeding motor vehicle. The stories Terry shares will take you from the depths of despair and edges of darkness to bringing you up with her amazing spirit of perseverance and resilience. This book is not a how-to manual for facing the challenges of life but rather an inspirational guide for living a whole-hearted life no matter what hand someone is dealt.Terry Chase, ND, MA, RN, CEIP-Ed, is dedicated to health, growth & learning. She has a deep and multi-faceted background of advanced education and hands-on experience in healthcare, education, and professional development. A professional coach and speaker offering keynotes, experiential workshops and break-out sessions in communication, team skill and education practices, as well as coaching programs to develop extraordinary leaders. To learn more visit www.DrTerryChase.com.Morris Ardoin is the author of Stone Motel – Memoirs of a Cajun Boy (2020, University Press of Mississippi), which has been optioned for TV/film development. He also writes about medicine and health care, immigration and asylum, and higher education. He lives in New York City. His blog, “Parenthetically Speaking,” which focuses on life as a writer, cook, and a bayou boy living in New York City, can be found at www.morrisardoin.com. Instagram: morrisardoin. Learn more about your ad choices. Visit megaphone.fm/adchoices

This episode of How To Be Wrong is about humility, beauty and the ways in which our society dictates the nature and boundaries of what is deemed beautiful. We talk with philosophy professor and Pulitzer Prize finalist Chloé Cooper Jones about desirability and the ways in which difference is constrained through our social interactions, as well as her own experience as a disabled person. We also discuss some of the ideas in her superb book, Easy Beauty: A Memoir, published by Simon & Schuster in 2022.John Kaag is Professor and Chair of Philosophy at UMass Lowell and External Professor at the Santa Fe Institute. John W. Traphagan, Ph.D. is Professor and Mitsubishi Heavy Industries Fellow in the Department of Religious Studies at the University of Texas at Austin, where he is also a professor in the Program in Human Dimensions of Organizations. Learn more about your ad choices. Visit megaphone.fm/adchoices

Claudia Garcia crossed the border because her toddler, Natalia, could not hear. Leaving behind everything she knew in Mexico, Claudia recounts the terror of migrating alone with her toddler and the incredible challenges she faced advocating for her daughter's health in the United States. When she arrived in Texas, Claudia discovered that being undocumented would mean more than just an immigration status—it would be a way of living, of mothering, and of being discarded by even those institutions we count on to care.Elizabeth Farfán-Santos spent five years with Claudia. As she listened to Claudia's experiences, she recalled her own mother's story, another life molded by migration, the US-Mexico border, and the quest for a healthy future on either side. Witnessing Claudia's struggles with doctors and teachers, we see how the education and medical systems enforce undocumented status and perpetuate disability. At one point, in the midst of advocating for her daughter, Claudia suddenly finds herself struck by debilitating pain. Claudia is lifted up by her comadres, sent to the doctor, and reminded why she must care for herself.A braided narrative that speaks to the power of stories for creating connection, Undocumented Motherhood: Conversations on Love, Trauma, and Border Crossing (University of Texas Press, 2022) reveals what remains undocumented in the motherhood of Mexican women who find themselves making impossible decisions and multiple sacrifices as they build a future for their families.Elizabeth Farfán-Santos is a medical anthropologist and the author of Black Bodies, Black Rights: The Politics of Quilombolismo in Contemporary Brazil.Reighan Gillam is Associate Professor in the Department of Anthropology at the University of Southern California. She is the author of Visualizing Black Lives: Ownership and Control in Afro-Brazilian Media (University of Illinois Press). Learn more about your ad choices. Visit megaphone.fm/adchoices