Disability Studies and Mad Studies

Cripping Ecorelationality and Ecorelational Pleasure 
 
In my recent research, I have been interested in productive intersections between environmental studies and disability studies, in other words, the research area that may be called green or environmental disability studies. I have been studying how concepts developed in this field find a reflection in cultural production and, more specifically, in what I call cripped ecorelational aesthetics. I define it as a form of aesthetics which creates a space for meaningful encounters between the human and the non-human, accentuating the essential vulnerability of all human and nonhuman beings and promoting an ethics of (inter)dependence and care. A key question that I would like to address in my presentation concerns the role of pleasure in this aesthetics. To this aim, I will introduce the concept of ecosexual pleasure and examine how this campy subversive intimate queer concept of pleasure manifests itself in works of disabled female artists – Riva Lehrer, Claire Cunnngham (in her audioworks created in collaboration with academic Julia Watts Belser) and Nomi Lamm (in a song performed as part of We Love Like Barnacles by Sins Invalid). As presented in these paintings, recordings, and a performance, erotic ecorelational pleasure promotes more care-ful and ethical ways of living on Earth as well as challenging ableist presumptions about the bodyminds that can give and receive or experience such pleasure.
 
Bio: Katarzyna Ojrzyńska is assistant professor at the Department of English Studies in Drama, Theatre and Film (Institute of English Studies, University of Łódź, Poland). Her research interests mostly oscillate around cultural disability studies. She collaborates with the Theatre 21 Foundation and Warsaw’s Downtown Centre of Inclusive Art. She has translated Rosemarie Garland-Thomson’s book Staring: How We Look into Polish (Gapienie się, czyli o tym, jak patrzymy i jak pokazujemy siebie innym, Fundacja Teatr 21, 2020) and co-edited (together with Maciej Wieczorek) a collection of essays entitled Disability and Dissensus: Strategies of Disability Representation and Inclusion in Contemporary Culture (Brill, 2020).
 

TBA

Clocks and Temporalities of Parental Care for Persons with Disabilities
The parent provides care 24/7…
I’m very strict and I followed a very strict routine – even now we’re constantly on various strict routines.
Good care by contemporary families with children with disabilities prolongs their lives, which raises a series of other questions: What happens after they turn 18, how do we care for these young people and their families after they turn 25, 35 or even 50, what happens after we are no longer around?
 
These words of Galya Koycheva, parent of a person with multiple disabilities, activist and psychosocial support specialist can be often heard in biographical interviews and public discussion on life with disability in Bulgaria (and most probably in talks on the topic of any other parents all over the world). They draw attention to specific timing and temporal horizons, which significantly differ from public calendars and timetables, from model biographies and expectations for personal and professional growth. It is no coincidence that the period after the first encounter with the diagnosis of the disability is experienced as “going out of rhythm” and “going out of the society” – of the society of normal, active and productive individuals. However, this experience does not presuppose entering ahistorical mode. On the opposite, the social changes and generational crisis severely affect the life trajectories and catalyze various deficits and lacks – of financial stability, job opportunities, of adequate health care and public support, which make mothers like Galya Koycheva fear for the future of their children.
What does it mean to live with disability in terms of experience of biographical and social time? Where do the life projects of parents, caring for children with disabilities in Bulgaria intersect or diverge with common work routines, agendas of national institutions or NGOs, and with cultural timing norms in general? What are the chronoholitics and generational contexts that underpin or confront them?
More generally, whether the specific dynamic of the parental care for life with disability (in Bulgaria) can be considered as trigger for the construction of and the adherence to alternative social timings and cultural life protocols, which evinces a strong critical potential for evaluating the social and historical frames of „normality“ and “personal development”.
 
Bio:
Assoc. Prof. Dr. Galina Goncharova is a lecturer at the Department of History and Theory of Culture at Sofia University “St. Kliment Ohridski”. Her research interests are in the field of Bulgarian cultural history, oral history, anthropology of religion and culture of care. She has published on death and dying in (post)socialism, generational discourses, religious identities and practices, care for life with disability, etc. Together with Ina Dimitrova, she is co-editor of the thematic issue “Disability, Care, Postsocialism”, Critique & Humanism Journal 55 (3), 2022 (In English and in Bulgarian).
 
There is no paper to read ahead of the presentation.
 

Emily Herrington, Touch Hunger: The story of hand transplants (Introduction)
 
Abstract:
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.
 
Bio:
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.

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.
 

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.
 
 

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.
 
 

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.
 

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. 
 

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.