History
This chapter outlines the ways in which our understanding of normal health can shift according to measurement technologies and explains the historiographical and conceptual background to this research. Moving through an outline of each chapter of the book, this introduction argues that our desire for single numbers and quantifiable data has shaped our understanding of the normal as dichotomous to the abnormal. The idea of normalcy is historicised and explained in the context of an era that was overwhelmingly concerned with degeneration and disability and ways of quantifying these deviant attributes through either direct or indirect measurements. The idea that numerical measurable data has privileged (and powerful) epistemological significance is highlighted through explication of the comparison between hearing and breathing, which is characterised by extreme diversity in personal experience which eludes fixed representation. The impetus behind the reduction of these multidimensional sensorial qualities stemmed from powerful bureaucratic forces for whom numerical classification was especially important, namely, the British Post Office and the Medical Research Council, and this chapter details the importance of these two bodies to British society during the interwar years and explains the drive behind their standardisation of normalcy.
Moving on from Chapter 6’s analysis of the difficulties surrounding classification of individual respiratory disability, this chapter explores how those so classified lived with this disability in the interwar period. By discussing technologies designed to enable breathing, this chapter highlights user modification of respiratory technologies and particularly highlights the case of the Bragg–Paul pulsator. The pulsator was originally designed in collaboration between a user and an engineer. Yet the embodied knowledge that was used to create this mechanical respirator was not accepted by the medical establishment. Physiotherapists disputed its viability and questioned the health benefits of the principles by which the pulsator operated, and this dispute led to the MRC directing an intervention to decide on a ‘standard’ breathing machine. However, these inimitable breathing machines proved to be remarkably difficult to standardise.
This chapter explores how the drive to translate breathlessness into quantifiable, scalable measures was influenced by historical interactions between medical expertise, industrial interests and compensation schemes. Considering these interactions highlights the related processes by which we have variously decided which groups count as medically distinguishable populations. Tracking the changing normal values used in spirometry values through the prism of two groups considered to be significant categories at different points in the twentieth century – women and miners – highlights the interactions between race, class and gender in spirometry. Considering the first group, women, demonstrates how difference in lung function between men and women was established, and the varying extent to which such differences were attributed to biological or societal causes. Similarly, analysing the efforts to define normal lung function for miners highlights the way in which abnormal lung function was attributed to the essential nature of the miner’s body, and underlines the impact of politics on the classification of respiratory disability. In this way, Chapter 5 uses historical case studies to argue that the selection of healthy subjects to create a standard of normalcy worked as a powerful way to manipulate the categorisation of disability as well as to obscure its true causes.
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.
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.
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.
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?
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.
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.