Disability Studies and Mad Studies
This working group in disability studies and mad studies provides a forum for scholars from around the world and in a number of different disciplines to come together to share their work. It is also meant to provide people who are new to the fields with an entry point into key work in the fields. The group is open to specialists and non-specialists, and interested students. The group will discuss works in progress and published works, and it will provide a forum for specialists to lead seminars and give lectures in their area of expertise. The history of science, technology, and medicine is critically important in disability studies and mad studies, but students and scholars from those areas of study rarely have the opportunity to engage with one another’s work in ways that are both meaningful and lasting. This working group will begin to remedy that situation by providing a virtual forum for students and scholars to come together to share their work and have conversations with one another.
Closed Captioning for the Working Group on Disability Studies and Mad Studies is made possible by the generous co-sponsorship of the Center for Disability Studies at the University at Buffalo.
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Tuesday, December 12, 2023 12:00 pm to 1:30 pm EST
Emily Herrington, Touch Hunger: The story of hand transplants (Introduction)
No one knows more about the value of human touch and human hands than a person who has lost a hand, or both their hands, and received a hand transplant. In the Introduction to Touch Hunger: The story of hand transplants, the personal problem of hand loss and the hypothetical promise of hand transplantation are introduced through the story of Rich Edwards, a chiropractor who lost the use of both his hands in a fire and sought experimental double hand transplantation as a last grasp at restoring his vocation and relational quality of life. Based on oral history interviews with hand transplant patients and their caregivers and romantic partners, TOUCH HUNGER explores the possibilities and limitations of life with transplant hands compared to life with one or no hands following catastrophic injury or amputation. What is it like to undergo such dramatic experimental surgery, in favor of existing reconstruction or prosthetic options? Are hand transplants successful from patients' point of view, especially patients like Rich Edwards, who deeply valued his sense of touch? How do partners and family members of hand transplant patients feel about their loved ones' donated hands, or their role in maintaining a successful outcome for transplant?
In alternating chapters with oral history accounts, TOUCH HUNGER tells the story of hand transplants as a global medical experiment. Being the first organ transplants performed to improve a patient’s quality of life, rather than to save it, experimental hand transplants in 1998 and 1999 created a new medical field bridging plastic surgery and transplant immunology: reconstructive transplantation. The backstory of institutional-political dynamics giving rise to new hand transplant programs and therapies helps widen the frame of the book and in many cases, gives context to hand transplant patients’ grounded observations and sense impressions. The chapter closes by presenting the structure of the book, its methods and its rationale.
Emily Herrington is a writer, artist and teacher living in Pittsburgh with her partner Paul and a cat named Iggy. She has a BA in English from Bellarmine University in Louisville, Kentucky and a MS in Science Writing from MIT, and she worked several years as a science writer and communications officer before moving to Pittsburgh where she earned a PhD in Communication and a MA in Bioethics in 2019. Emily’s oral history research with hand transplant patients inspires her work in health policy advocacy, most notably with the Reconstructive Transplant Peer Network, a group of hand and face transplant patients and their partners who meet monthly and work with surgeons to help shape policy and processes for reconstructive transplant patients.
Tuesday, January 9, 2024 12:00 pm to 1:30 pm EST
Tuesday, February 13, 2024 12:00 pm to 1:30 pm EST
Tuesday, March 12, 2024 12:00 pm to 1:30 pm EDT
Tuesday, April 9, 2024 12:00 pm to 1:30 pm EDT
Tuesday, May 14, 2024 12:00 pm to 1:30 pm EDT
September 12, 2023
THIS EVENT HAS BEEN CANCELED. WE WILL ATTEMPT TO RESCHEDULE.
Tuesday, September 12
12 PM - 1:30 PM Eastern
Christopher Thomas Goodwin, "What Difference Does a (Disabled) Husband Make? Disabled Veterans, Women, and the Limits of Population Policy in the Third Reich.
Abstract: The close of 1942 brought a grisly milestone for the Nazi regime: over one million soldiers had died since the war began. Anxieties flared among top leaders who began to weigh war’s supposed rejuvenating effects on the nation against the tremendous loss of valuable genetic material. One group of men survived, however. Over 100,000 strong by December 1942, disabled veterans had proven themselves as the masculine ideal. However, Nazi leaders believed, their missing limbs and maimed faces would drive off potential spouses and their hereditary lines would be lost forever. Marriage mediation arose as the answer to this problem, and as a potential solution to the vexing problem of managing the German population along racial lines. The Nazi regime used state-run marriage mediation of disabled veterans to align women’s marital choices with the Nazi goal of raising the German birthrate. Marriage centers were intended as a gateway to wider acceptance of population policy and to the eventual abandonment of the marriage “free marketplace” in favor of demographic management to create collective outcomes of hereditary fitness. This involved creating new marital and reproductive duties among Germans and channeling this social responsibility to convince Germans to willingly participate in marriage mediation for the greater good. Yet, individual desire and self-reliance in the broader marketplace almost always trumped Nazi policy.
Bio: Christopher Thomas Goodwin is a doctoral candidate in the history department at the University of Illinois, Urbana-Champaign. He is currently completing his dissertation on the cultural, ideological, and legal construction of disabled veterans in the Third Reich during the Second World War entitled “Broken Supermen: Disabled Veterans and Soldiers in Nazi Germany, 1939-1951.
May 9, 2023
Blind in Early Modern Japan: Disability, Medicine, and Identity
Presentation: This presentation, which is partly based on his 1st book, will discuss a broad methodological question: What questions do/should we ask when we study disability history? Historical sources, if they mention disability at all, do not reveal everything about disability. It is up to the historian to probe the context of those sources, and the context of those times, to find illuminating clues. I will discuss how early modern Japanese sources and later sources can be productively examined to piece together fragments of evidence on historical ideas about blindness and, more generally, disability.
Bio: Wei Yu Wayne Tan is Associate Professor of History at Hope College. He is the author of Blind in Early Modern Japan: Disability, Medicine, and Identity (University of Michigan Press, 2022). He is interested in disability studies/history, especially in the intersection of disability history and the history of science, technology, and medicine in early modern and modern East Asia.
April 11, 2023
Title: Alluring Stimulant: Poison, the Body, and a Reinterpretation of Side Effects
Abstract: Patient experience has been an important topic in disability studies. How do we interpret varied sensations that reveal the condition of a patient’s body and suggest approach to healing? This talk tries to address the question by interrogating the concept of “side effects.” Going beyond the Western biomedical framework, the talk presents a case study of an arsenic drug named Five-Stone Powder (Wushi San), one of the most craved medicines in medieval China due to its perceived power to enhance the body and illuminate the mind. Mismanaged, however, the powder could trigger devastating effects on the body, even death. By examining the popular yet controversial drug and the debates surrounding it among physicians and scholars, this talk highlights the central role of bodily sensations in administering the stimulant and more broadly, the dynamic and processual characteristic of drug therapy in Chinese healing culture that challenges the prevailing view of “side effects” in biomedicine today.
Bio: Yan Liu is an associate professor in History at SUNY, Buffalo. He specializes in the history of medicine and healing in premodern China, with a focus on material practices of medicine, religious healing, the history of the senses, and the global circulation of medical knowledge. His first book, Healing with Poisons: Potent Medicines in Medieval China, was published by the University of Washington Press in 2021 (open access available). His second book project explores the circulation of aromatic medicines and olfactory knowledge along the Silk Roads from the 7th to 13th century.
March 14, 2023
Symptoms of Insurrection: Contagion, Disease, and Social Disorder in Maria Edgeworth's Ennui
Central to the biopolitics of Edgeworth’s novels and her conception of society is a model of health that can be attributed to or shared with her physician brother-in-law, Thomas Beddoes. In his Hygëia; Or, Essays Moral and Medical, on the Causes Affecting the Personal State of our Middling and Affluent Classes (1802), Beddoes lays out a view of health primarily ‘an object of regulation’. Understanding the doctor to function as a sort of moral guardian, Beddoes’s conception of health ‘promote[s] activities that lead people toward healthy, cohesive experiences, and to suppress those that have the unhealthy effect of dissolving the relations he holds to be vital to physical, ethical, and social health. The greatest threat to the healthy society, therefore, is any kind of dissolution of the static order of relations into fluidity melting the hierarchical alignment of social members. This conception of health not only establishes the parallels between moral and physiological health that shape the critique and representation of society in Ennui, but, more importantly, it enacts the type of social surveillance that Edgeworth sees as key to maintaining the social health of the body politic. Drawing on the biopolitics of Beddoes, Edgeworth’s novel uses the language of infection and contagion to describe the threat of rebellion and insurrection amongst the broader body politic, associating it specifically with an ‘improper’ body, in order to underscore the need for a biopolitical regime that surveys and manages these potential feverish outbreaks.
Bio: Matthew L. Reznicek is Associate Professor of English and Medical Humanities at Creighton University, where he holds joint appointments in the College of Arts and Sciences and in the School of Medicine. He has published widely on the relationship between gender, illness, and citizenship in early nineteenth-century fiction. His teaching draws on the capacity of literature to reveal developments in medicine and politics, as well as the capacity to represent the social determinants of health. He is Associate Editor of The Journal of Philosophy, Ethics, and Humanities in Medicine and serves as the Vice President of the American Conference for Irish Studies. Today's seminar comes from research for his second monograph, Healing the Nation: Gender and Medicine in the Romantic National Tale.
February 14, 2023
Title: “Carthorses, Jades, and Equine Disability”
Abstract: This chapter explores eighteenth-century definitions of ‘disability,’ ‘disabled,’ and ‘deformity’ as multi-species and historical concepts. In doing so, this chapter thinks about these terms in relation to equines while analysing other labels common to ableist discourse that conflate equine and human under a broad system of oppression. As this chapter argues, this system was highly gendered, constructing mares as naturally lesser, weaker, and deformed. Such constructions, in turn, created and promoted ideas of who is ‘good to mistreat’ or ‘good to be good to,’ while actively painting such treatment as a naturalized language based on period medical and moral knowledge. Thus, as this chapter shows, during the eighteenth century not only is equine disability gendered, but such gendering, and the ableist systems that support it, is directly connected to widespread equine suffering and the widespread acceptance of such suffering during the most sentimental of centuries.
Bio: Monica Mattfeld: is Assistant Professor of English and History at the University of Northern British Columbia. She has written on the history of animal and human disability in “Animal” (Bloosmbury, 2021) and on horse-human relationships and performances of gender in Becoming Centaur: Eighteenth-Century Masculinity and English Horsemanship (Penn State 2017). In collaboration with Kristen Guest she has edited Horse Breeds and Human Society: Purity, Identity, and the Making of the Modern Horse (Routledge 2020), Equestrian Cultures: Horses, Human Society, and the Discourse of Modernity (University of Chicago Press 2019), and a special issue of Humanimalia focusing on breed as a category of identity. Mattfeld is currently interested in questions of animal disability and agency; breed, type and purity in the seventeenth and eighteenth centuries; along with questions relating to equine performance and Romantic hippodrama.
January 10, 2023
Beth Linker, University of Pennsylvania
Title: Disability and the Making of the Posture Sciences
Abstract: On the eve of World War I, a new health threat gripped the United States. The first report of it ran in the New York Times, just weeks before the U.S. officially declared war on Germany in the spring of 1917. A Boston physician conducting physical exams on freshman entering Harvard University found a distressing number of students with poor body alignment. The study, known as the “Harvard Slouch” report, would become the baseline for subsequent population studies on posture health for much of the century to come. In those years, Americans from all walks of life—immigrants, military draftees, school children, educators, and industrial workers—would undergo posture examinations, with public health officials reporting that approximately 80 percent of U.S. citizens suffered from postural defects. These studies would continue for nearly the entire twentieth century, forming the basis for a national health epidemic geared toward bodily surveillance and disability prevention.
My forthcoming book Slouch focuses on this consequential but often overlooked episode in U.S. history with an eye toward revealing how notions of ableness along with a pervasive fear of disability fueled the creation of and preoccupation with the poor posture epidemic. The first chapter of the book “Disability and the Making of the Posture Sciences” explores how poor posture came to be construed as a disability in the first place, largely through the work of paleoanthropolgists and physicians.
Bio: Beth Linker is the Samuel H. Preston Endowed Term Associate Professor at the University of Pennsylvania in the Department of the History and Sociology of Science. She is the author of War’s Waste: Rehabilitation in World War I America (Chicago, 2011) and co-editor of Civil Disabilities: Citizenship, Membership, and Belonging (Penn Press, 2014). Her book, Slouch: Posture Panic and the Making of an Epidemic is forthcoming from Princeton University Press.
December 13, 2022
“Ronald Reagan, Frank Lanterman, and the Shape(ing) of Deinstitutionalization in California”
This presentation is based on the last chapter of my book manuscript, California and the Politics of Disability, 1870-1970. In it I look at how the election of Ronald Reagan as governor in 1966 threw a curve ball into California’s plans for deinstitutionalizing the population of state hospitals in the 1960s. I focus on the political wrangling that took place at every level of government (local, county, and state) involved in the decision-making process in California about when, how, and why to close the majority of state institutions for the disabled and yet still provide at least some level of care. I also examine how the state’s original plans (embodied in State Assemblyman Frank Lanterman, who had led the charge in state government for a shift towards community care since the 1950s) were quickly subverted and altered by the arrival of a new conservative ethos in the form of Reagan’s gubernatorial administration, with lasting consequences for Californians with disabilities.
Eileen V. Wallis is a Professor of History at California State Polytechnic, Pomona. She specializes in gender history, the American West and California, public history, and disability history. She is the author of Earning Power: Women and Work in Los Angeles, 1880-1930 and of numerous scholarly articles on the history of California and the American West. Her current book project, “California and the Politics of Disability, 1850-1970,” uses Los Angeles County as a case study to understand how the interplay between state and county governments shaped the lived experiences of Californians deemed “mentally disordered” from the mid-nineteenth to the mid-twentieth century.
November 8, 2022
"Early Hollywood’s Mad Girls: Disability, Difference & Self-Destruction"
In 1918, Motion Picture Magazine reported that Fannie, “a country girl who was never taught anything,” wrote to Vitagraph studios vowing that, “To become a movie actress I could undergo all the tortures of the Inquisition of Spain.”
Availing herself of the new embellished language of media celebrity, the self-described “poor and melancholic dreamer” hints at an often-disregarded violence shadowing the auspicious rise of the US star system: her eager self-endangerment reveals that the economy of sacrifice and reward the early film industry affixed to Hollywood success particularly spoke to struggling moviegoers. The country girl’s readiness to endure unwarranted “tortures” in order to make it in Hollywood also exposes an intuitive awareness of the skewed power-dynamics and ruthless patriarchal elitism subtending the US film industry in the 1910s. Tellingly, the process Fannie offers to undergo is compared to a brutal moment of misogyny in Western history, where clergymen prosecuted women—many adolescent girls—for the crimes of heretic defiance. Such accusations, feminist scholars have shown, worked to justify a concerted institutional attack on women’s sororal communities and matrilineal knowledge. Published as an example of “movie-mad” girlhood, Fannie’s letter thus captures how a male-presided film industry responded to the advancement of a woman-centered film culture: by advertising the ambitions of young female fans as symptoms of broader pathologies.
This paper addresses the roles female fan suffering—from social alienation to disordered moods and generational strife—played in the reception and promotion of US cinema during World War I. I argue that by exploring first-person narratives found in private papers and the press, we gain insight into the yearning, grit, injury, and despair experienced by working, immigrant, and middle-class girls who hoped a star-driven industry would help them transcend the heterosexist strictures of white propriety, the grind of menial employment, the scarcity of rurality, and the segregation of urban life. Though easily read as artifacts of female failure, the suicide notes and criminal statements examined here emerge as testaments of queer film reception: a powerful nonnormative attachment to the pictures that willfully went against the grain of convention by instead embracing moral, social, and legal disobedience.
Bio: Diana W. Anselmo is a feminist film historian and a queer immigrant. Her work on female audiences has appeared in Screen, Camera Obscura, Film History, Feminist Media History, JCMS: Journal of Cinema and Media Studies, and Journal of Women’s History, among others. Her first book, A Queer Way of Feeling: Girl Fans and Personal Archives of Early Hollywood, is forthcoming with the University of California Press. She is currently an Assistant Professor of Film at California State University, Long Beach.
October 11, 2022
Dissertation Chapter: State-Level and Local Associations Led by Blind People in the Late-Nineteenth- and Early-Twentieth-Century United States
Abstract: This dissertation chapter draft explores the formation, activities, and legacies of state-level and local associations led by blind people in the late-nineteenth- and early-twentieth-century United States. These blind-led associations sought to challenge some of the ways in which the specific forms of ableism of their period marginalized many blind adults from full economic and social citizenship. The associations were founded and operated across the United States, though, in step with wider reform trends, they were most represented in the midwestern, northern, and western states. Leaders in the organizations tended to be (though were not always) blind women and men who were also middle-class and white. These American blind-led associations emerged from network connections related to the state residential schools for blind children which had been operating in the United States since the 1830s. The schools had channeled many of the social hierarchies of their regional and national contexts, which manifested in the exclusion or relegation within internal school hierarchies of Indigenous, Black, non-white immigrant, and poor blind people. These power dynamics in the schools were in turn reproduced when they and their alumni organizations became incubators of blind-led association-building after the American Civil War. While the blind-led associations emerged from the schools, they simultaneously represented a departure from and a challenge to the priorities of the schools and the superintendents who managed them. Unlike the schools, the associations explicitly valued blindness as a form of expertise in leadership. Furthermore, the associations primarily sought to serve blind adults rather than children. The chapter reconstructs the activities of these associations through archival research in collections related to blindness history, as well as through analysis of sources identified through keyword searches in digitized newspaper databases and other online corpora. It argues that the wider reform landscape of American “Progressive Era” organizing shaped the composition and trajectories of the blind-led associations. This context furthermore conditioned the associations’ achievements and their legacies, including the limitations of those achievements and legacies.
Madeline (Maddie) Williams is a PhD candidate in the History Department at Harvard University. She is working on her dissertation on the history of organizing led by blind people in the nineteenth- and twentieth-century United States. During the 2021-2022 academic year, she was a Dissertation Fellow at the CHSTM. For the Fall 2022 semester, she is teaching an undergraduate seminar on “Disability in American History” as a Stephen A. Walsh History Prize Instructor at Harvard.
May 10, 2022
Natalia Pamula, Work-in-progress (a book chapter draft)
This chapter analyzes a range of literary texts (non-fiction, young adult literature, disability memoirs) to examine representations of disability futures in post-socialist Poland. Although produced over the span of twenty-six years (1995–2021), these futures are quite uniform in that they are privatized and, more specifically, familialized. A disabled future is secured only by a family and only within a family. Polish post-1989 literary texts show that the family is the only place that can guarantee a future for a disabled subject. Without a family or a mother, a disabled subject is utterly alone, whereas to live as the mother of a child with disability is to never be alone. As a result, these texts testify to the binding of the bodies and futures of a mother and her disabled child. In other words, in post-1989 Polish literature, a disabled child is imagined as a mother’s child. The birth of a disabled child oftentimes signals the end of a mother’s normatively understood future. Or, to put it differently, a mother’s future becomes intimately interwoven and attached to her disabled child’s future. These bindings of bodies and futures generate what I call a “violent intimacy” between a mother and her disabled child.
BIO: Natalia Pamula is an assistant professor at the American Studies Center at the U of Warsaw. She works on disability discourses and representations in Polish socialist and post-socialist culture. Her work has appeared in Aspasia, East European Politics and Societies and Cultures, and Canadian Slavonic Papers.
Jenifer Barclay is an Associate Professor in the Department of History at the University at Buffalo, Associate Director of the university’s Center for Disability Studies, and Associate Editor for the Review of Disability Studies: An International Journal. She specializes in 19th century U.S. history, the history of slavery, the history of disability, race and global health.
Katherine Ott, Ph.D., is a curator in the Division of Medicine and Science at the Smithsonian's National Museum of American History. She is the author or co-editor of three books and has curated exhibitions and published on such topics as the history of disability, medicine, polio, HIV and AIDS, skin, LGBTQ+, and scrapbooks. She received the 2016 Society for Disability Studies Senior Scholar Award, is an OAH Distinguished Lecturer and teaches a graduate course in American Studies at the George Washington University. Ott tweets @amhistcurator about her work.
Pamula is Assistant Professor of Cultural Studies and Disability Studies at the University of Warsaw, Poland. She specializes in Polish literature, American literature, and gender.
Mike Rembis is an Associate Professor in the Department of History at the University at Buffalo and the Director of the university’s Center for Disability Studies. He specializes in 19th and 20th century U.S. history, the history of psychiatry, the history of institutions, the history of eugenics, the history of disability, and mad people's history.