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Heredity research and counselling at the Clarke School, 1930–1960
Marion Andrea Schmidt

From the 1930s to the 1960s, the Clarke School heredity division worked with leading figures of eugenics and medical genetics, e.g. geneticist Madge Macklin, or the NIH. During this time, the school became a leading centre of hereditary deafness research – a position it would lose by the 1960s, when genetics became part of large, laboratory biomedicine. Even though it was part of larger developments in eugenics and genetics, the school retained its unique small-school character of heredity research and counselling. Education, medicine, and eugenics intertwined in its mission to turn deaf children into normal, productive, and responsible citizens – which also meant discouraging them from marrying a deaf partner. While in the 1930s and 1940s, eugenicists and oralist educators could agree on this, by the 1950s and 1960s, geneticists became more confident about predicting reproductive outcomes, and believed that such decisions should be left to the individual.

in Eradicating deafness?
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From Bell to biodiversity
Marion Andrea Schmidt

Looking at genetic deafness research from the late nineteenth into the early twenty-first century, in a way, we have come full circle. After a century of professionals urging deaf people to be aware of their genetic make-up, Deaf activists and scholars indeed do so – and have replaced the notion of defective genes with the more inclusive message of biodiversity. Linguists, social scientists, historians, architects, biologists, and educators have made the case for Deaf gain, the idea that deafness is not a deficit, but a positive trait that has enabled its bearers to make valuable contributions to culture and art, linguistics and architecture. Genetics and theories of evolution play an important role in these claims, and Deaf identity has come to be defined as an ethnocultural identity based also on shared genes. Comparing genetic deafness research to other medical-technological ‘solutions’ for deafness (e.g. cochlear implants), the conclusion offers an analysis of current debates over diversity and an explanation of why some people see the potential eradication of deafness as medical progress and others see it as a threat to their culture, language, and community.

in Eradicating deafness?
Genetics, pathology, and diversity in twentieth-century America

Is deafness a disability to be prevented or the uniting trait of a cultural community to be preserved? Combining the history of eugenics and genetics with deaf and disability history, this book traces how American heredity researchers moved from trying to eradicate deafness to embracing it as a valuable cultural diversity. It looks at how deafness came to be seen as a hereditary phenomenon in the first place, how eugenics became part of progressive reform at schools for the deaf, and what this meant for early genetic counselling. Not least, this is a story of how deaf people’s perspectives were pushed out of science, and how they gradually reemerged from the 1950s onwards in new cooperative projects between professionals and local signing deaf communities. It thus sheds light on the early history of culturally sensitive health care services for minorities in the US, and on the role of the psycho-sciences in developing a sociocultural minority model of deafness. For scholars and students of deaf and disability studies and history, as well as health care professionals and activists, this book offers new insight to changing ideas about medical ethics, reproductive rights, and the meaning of scientific progress. Finally, it shows how genetics came to be part of recent arguments about deafness as a form of biocultural diversity.

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Of races and genocides
Marion Andrea Schmidt

In the 1880s, Alexander Graham Bell feared that deaf people’s intermarriage might lead to a deaf race. In the early 2000s, geneticist Walter Nance feared, on the contrary, that genetic technology might be genocidal for Deaf culture. These two figures mark the beginning and the end point of this cultural history of hereditary deafness research. In the century between, scientists made immense progress in identifying the genetic mechanisms underlying the inheritance of deafness. They uncovered that there were not only one or two responsible genes, but hundreds of different forms and syndromes. Yet there is a twist in this simple story of progress. What it means to carry one of the genes for deafness, and what should be done about it, differed and differs greatly. What has influenced these perceptions during the past century and what is at stake in researching genetic deafness? How, during the past century, have ideas about disability, difference, and citizenship changed, where did eugenics end, and, perhaps, neo-eugenics begin, and what do genes mean for our identity?

in Eradicating deafness?
Psychogenetic counselling at the New York State Psychiatric Institute, 1955–1969
Marion Andrea Schmidt

The first specialized psychiatric and genetic counselling services for deaf people, offered partially in sign language, were established at the New York State Psychiatric Institute in the late 1950s. They were part of a larger mental health care project for deaf people, led by psychiatric geneticist Franz Kallmann. The project was a collaboration with local deaf communities that makes visible a surprising confluence of eugenic traditions and minority movements, science, and activism. It was a turning point in the treatment and perception of deafness in the US, redefining it as a ‘stress-inducing’ psychological condition, and the deaf as a neglected social minority. Tying together the history of psychiatry, psychology, and genetics, this chapter shows how Kallmann and his co-workers reframed older eugenic paradigms in the language of 1960s health and civil rights activism, reframing family and genetic counselling as a health service to which deaf people were entitled.

in Eradicating deafness?
The changing meaning of Usher syndrome, 1960–1980
Marion Andrea Schmidt

Usher syndrome – congenital deafness and progressive vision loss – is often portrayed as one of the most tragic disabilities imaginable. This notion certainly drove psychologist McCayVernon, who in the late 1960s initiated a campaign to raise awareness with the goal of the eventual eugenic eradication via early screening, counselling, and, if necessary, ‘therapeutic’ abortion. Over the course of the 1970s and 1980s, the definition of Usher syndrome changed, not least because of the input and experiences of people living with it. In the 1960s, professionals defined it as a severe psycho-neurological disorder that caused psychiatric and emotional disturbances alongside the hearing and vision loss. Encounters with individuals with Usher syndrome who lived independently and were successful professionals challenged this paternalistic definition. Patient advocates shifted attention from eugenic prevention to improving quality of life, yet also used genetic motives to argue for their identity and worth. By the 1980s, both advocates and professionals focused on the emotional impact of living with deaf-blindness for the affected individuals and their families.

in Eradicating deafness?
Deaf people as objects of research, reform, and eugenics, 1900–1940
Marion Andrea Schmidt

Deaf people have long been the objects of religious salvation, of philanthropy, and educational reform. By the early twentieth century, science and medicine claimed to turn deaf people into productive, rational citizens. Eugenics, too, was part of these progressive reforms. Schools became the centres where these scientific, moral, and educational claims about normalizing deaf people came together, and no school embodied these ideals better than the Clarke School for the Deaf in Northampton, Massachusetts. Founded in 1867 as the first permanent oralist school in the US, it established, in 1928, a research department with divisions for psychological, audiological, and heredity research, all working towards the scientific management of deafness. Yet collaborating with scientists from other institutions, the school also had to engage with approaches to deafness that did not align with its own.

in Eradicating deafness?
Collaborating for culturally sensitive counselling, 1970–1990
Marion Andrea Schmidt

In 1984, the Gallaudet Genetic Services Center (GSC) opened its doors, offering ASL-based and Deaf culture-specific genetic counselling and evaluation. It was made possible through federal funding to remove barriers to genetic services for ethnocultural minorities. The three hearing geneticists who drove the GSC’s foundation – Walter Nance, Joann Boughman, and Kathleen Shaver Arnos – considered genetic research a collaborative enterprise with Deaf communities, creating, for example, ASL signs for genetic concepts. Combining non-directive with culturally sensitive counselling, they promoted genetics not as a means for preventing deafness, but as a way to gain self-knowledge. Acknowledging deafness as a normal, even desirable trait, the GSC helped prepare the notion of genetic awareness as an integral part of one’s identity and a tool of empowerment for Deaf activism.

in Eradicating deafness?
Martin D. Moore

This chapter explores the ways in which balance was configured in diabetes care between the 1900s and 1960s. The balance of diet and insulin sat at the heart of self-care programmes during this period. However, amid growing political and popular interest in affective life, clinicians and a novel patient organisation quickly connected bodily balance with psychological and emotional stability in new ways. Depression, complacency, denial, fear and optimism soon became subject to management in clinical spaces, mutual aid publications and long-term professional–patient interactions, in response to changing notions of health citizenship and self-discipline, and as certain states came to be considered dangerous or beneficial to physiological and political balance. The chapter begins to map out the extensive array of tools and agencies involved in constructing selves oriented towards balance.

in Balancing the self
Dorothy Porter

This chapter investigates questions about balance in Parkinson’s Disease by analysing historical shifts in debates about a predetermined behavioural model of a Parkinson’s Disease personality, its relationship to artistic creativity and implications for therapeutic equilibrium in clinical management. The aim of the chapter is to demonstrate that focusing on balance merely in terms of therapeutic dosage plans ignores broader dimensions of balancing cultural conflict surrounding ontological and emergent meanings of the disease and the transcendent metaphysics of creativity. In this way it addresses the contingent scientific and clinical normativities of physiological and psychological balance and their relationship to models of the self. Drawing out the historical determinants of contingently normative neo-humoralism threaded through the story of Parkinson’s Disease, this chapter also explores an alternative, and equally ancient, narrative of balance about the dualism of creative genius. Efforts to balance drug reception in the brain, it argues, are bound to the legacy of Enlightenment normative contingencies concerning madness and reason, genius and lunacy, creativity and manic compulsion.

in Balancing the self