The editors of Disability Studies Quarterly have given me, as the winner of SDS's 2015 Senior Scholars Award, an opportunity to publish just about any relevant thing I want to say in the journal. I was very pleased to receive the Society's award, and I am also very pleased to have this opportunity, because I do have something I want to say, with some feeling of urgency, to the dedicated readers of this journal.
To some extent, what I have to say repeats, while broadening, the message I have in mind every time I address an SDS event, whether as a commentator at sessions at annual meetings, or in my acceptance remarks in 2015, when I received the award in Atlanta. That is, Keep doing what you're doing!, because the world always needs the deconstruction of what is deemed the normal, and the most important place to start is the deconstruction of ideas about the normal body and mind. Why "most important?" Because of the many tyrannies that can overtake daily life and ruin our hopes and dreams, none is more insidious and devastating than being thrown aside, because there is a consensus somehow that the way we look, or think, or move or don't move, or hear or don't hear, or see or don't see, etc., should destine us to be discounted human beings.
But that oppression is, at its core, part of a larger problem: how people who think they know what should be have come to that understanding, and why they persist in believing as they do. That such criteria for devaluing people and creating an Other are often completely taken for granted proves just how insidious they are, and hence how radical, as in getting to the root of things, is the work of those of us advancing the study of disability.
I cannot say that I have been any more enlightened than any other unknowing person in this regard, but the source of my present understandings is worth noting, because it speaks to the radical nature and emancipatory character of the study of disability. For years, as an American immigration and ethnic historian, I took the logic of the immigration laws in regard to exclusions for disabilities at face value, while at the same time objecting strongly to the racial and gender exclusions and qualifications in the laws and reading every work I could, from history and critical legal studies, that provided analysis of the racialization of immigration law. So did my colleagues in the field. We marked race, but rarely, if ever, reflected on disability. It seemed perfectly apparent that excluding people who could not lead an independent social and economic life and support themselves was not simply a prerogative of the state, but a duty. Then Douglas Baynton came along, and brilliantly observed, in effect: What a minute! Who were the people at both ends of those diagnoses and policy and legal proscriptions? What were the intellectual, cultural, and social foundations of those acting in behalf of the state to exclude prospective immigrants deemed defective, and hence unfit to live in the United States? Who and what guided and controlled them? If someone was rightly seen by an immigration officer at Ellis Island or elsewhere as, in the context of the past, 'likely to become a public charge,' was this a comment on that excluded individual, or on the functioning of narrowly stereotypical expectations and of discrimination in labor markets? What became of those deemed unfit who were ordered sent back to the places from which they had come? 1
The list of questions suggested by Baynton's skeptical reading of the laws, guided by his analysis of the profound influence of eugenics in the early twentieth century, I had unthinkingly accepted as reasonable grew longer and longer. Finally I realized not only that I didn't understand those laws, but, in addition, at an all too revealing level I didn't really understand those who were writing them, or the society they lived in and the culture that guided them. (The reader can take it for granted that I certainly had no understanding of the immigrants with disabilities caught up in these administrative processes.) It was at that moment that I began to the transformed into an historian of disability. The capacity of our subject to raise searching questions about the world at large and about what most people take completely for granted, as normal, captured my imagination, and the field became a kind of moral obligation for me to the extent I aspired to think effectively and critically about the world.
When skepticism is a general feature of culture, assumptions about the normal body and mind enter into serious, critical public discourse and changes in social practices are thus demanded, we tend to find disability broadly and deeply addressed. Of course, we may not approve of the ways in which, intellectually and from policy perspectives, the European Enlightenment bent science in the direction of cures and of protective segregation that led to exclusion and destructive therapies. But what is nonetheless at work in that history is a striving after not simply doing something differently, but acting on a radical impulse to correct what had come to be understood, after centuries of unquestioned obedience to norms and conventions, as inadequate or wrong. The study of disability was given life by a climate of skepticism striving after better understandings of the ways in which bodies and minds function. In turn, it greatly enhanced that skepticism, making it broader and deeper, and hence impacting the general history of society, culture, and politics. That is why so many outstanding and thoughtful people in the eighteenth century were involved in asking questions about bodies and minds. We are passing through another period of radical skepticism at this time. Doubts about all sorts of conventional wisdom are transforming our understanding of human beings and the conditions that limit them needlessly. Again, rethinking disability is not merely an artifact of that transformation, but, I believe, one significant cause of it.
I was reminded of the radical potential of disability to open knowledge of the world through oral history interviews I did in the Buffalo, New York area several years ago for an ongoing project, in which Michael Rembis and his doctoral student Kathryn Lawton and I have been engaged, that seeks to study the closing of the West Seneca Development Center (WSDC). 2 WSDC was a vast New York State residential facility and training center intended officially for people diagnosed as developmentally disabled. Located on the edge of farm country in an outer suburb of Buffalo, it was built to take pressure off an older state facility, the J.N. Adam Memorial Hospital, a repurposed tuberculosis sanitarium in nearby Perrysburg, New York, which could not handle the rapid increase in its resident population in the immediate post-World War II decades. Construction on WSDC began in 1958, and the complex of 33 buildings on 400 sylvan acres was opened in December, 1961. At its height in 1971, WSDC accommodated approximately 1700 residents. Its steady decline as a residential facility started in the late 1970s, when residents began being relocated to the community to live in group homes or independently, and the buildings came to be used increasingly for daytime programs and administrative offices, and then accelerated in 1990s. It formally closed in 2011, and at this time only two or three buildings on the vast campus are occupied, used as administrative centers by the Western New York Developmental Disability Services Office. 3
We are all aware of the broad outlines of this history, as they are commonly understood today. The fiscal crises of American state governments in the late twentieth century, as the American economy suffered frequent recessions and a general contraction, combined with shocking scandals about neglect and abuse at institutions, symbolized by New York State's Willowbrook, to produce questioning of the costs and purposes of such institutions. At best, the search began for humane and proactive alternatives; at worst, by contrast, the former residents were consigned to the care of families lacking the resources to assist them. That's the story we think we know. While the fiscal crisis of New York State is hardly irrelevant, WSDC never would experience the disgraceful conditions that had been revealed at Willowbrook. It functioned largely without repeated and serious scandal. From time to time, it's true, allegations were made of neglect or poor treatment of residents, and a 1990 state audit, which was done at a time when the institution was rapidly losing its purposes, formally revealed such conditions and for a time eligibility for federal funding was threatened. In general, however, WSDC was efficiently and professionally run within the great limitations that we have come to know its mission possessed. When WSDC was finally closed, it was not because it alone had failed. It was, in fact, hardly alone in experiencing that fate; it was one of 11 residential development disability institutions that were closing, and four others were scheduled to close soon thereafter.
WSDC did not close because those who ran it failed miserably in the execution of their responsibilities. New York State did indeed find such places too expensive to maintain, but I would argue that a more complete rendering of the story of the failure of WSDC must add that many of the professionals who worked in them, and were responsible for making them function lost confidence in them. They came to the belief on the basis of what they observed daily in trying to do their jobs responsibly, that the model of care, the large residential institution removed from the community-at-large, they represented was built on incorrect assumptions that were derived from both poor science and trust in the wrong authorities. They worked, more or less behind the scenes, to seek and establish alternatives, and while they all believe to this day that the work they did as individuals was valuable, none of them lament the passing of the institution. To tell that story in all of its dimensions, I believe, speaks to the tremendous capacity of disability to illuminate the past far beyond disability itself. Moreover, that story speaks not simply of disability being shaped by the world, but of our understanding of the shaping of disability as a vital element in the shaping of the world.
While Michael Rembis and his doctoral student Kathryn Lawton have been interviewing former residents on their paths out of the institution, with an emphasis on their advocacy in their own behalf, and the activists who supported them, the task I assigned to myself was quite different. I identified for in-depth, oral history interviews eleven salaried, professional employees, all retired or near retirement, who worked at WSDC during the years when it was scaling back its mission as a residential, 24-hour institution and becoming a daytime facility and administrative center. These men and women served as, for example, program administrators, recreation directors, occupational and physical therapists, teachers, and counselors. They were university-educated, and had M.A. degrees in special education, rehabilitation, and other relevant fields that they had obtained in the years between the late 1960s and early 1980s. I found them to be cooperative, articulate, critically-minded, and eager to be interviewed, rarely wary and never refusing the answer a question, even when challenged. They were eager to tell their stories, and believed their experience in working in the institution was significant, even if the institution was slowly dying and needed to be terminated during their employment in it.
What impressed me most about these interviews was the skepticism each of the interviewees expressed about the purposes of the institution, and the pride often expressed in the part they played in overseeing, often through facilitating the processes of placement in the community, the undoing of the institutional order their educations had encouraged them to maintain. They had learned hard lessons at work over the years, butting their heads against an institutional order they ceased, through witnessing its failures and its larger inhumanity, to believe in.
Most of them had been educated, with service in just such a place in mind, in graduate programs in which the dominant ethos was certainly one that did not question either the usefulness of such institutions, or their benign role in society in protecting those whom it was believed, mostly unquestioningly, needed protection from themselves and from society. Yet over the course of their careers each of them had come to strongly question not only the utility but the fairness of such places, the medical and legal paths by which the residents had been led to live in them, and to some extent the very concept of developmental disability itself. They became advocates of independent living and group homes, and above all else, residence in the community, as a part of the community. That questioning mostly came about in intimate and personal ways, through interaction with the residents, in all of their individuality and diversity, and knowledge of the random ways in which the population of residents was social and medically selected. Two of my interviewees told me an anecdote, which may well be legend rather than literal truth that symbolized for them the injustices that often arose out of those selections, with their fateful consequences for the individuals who would spend their lives at WSDC. The story had an old fashioned family physician examining a young child for cognitive delays, based on the suspicions of anxious parents or concerned teachers. By whatever random method the doctor employs over the course of a few minutes, he finds the child "slow" and somehow unlikely to ever catch up, so he takes out his prescription pad, and writes "Admit this child to West Seneca." The unknowing parents act on the doctor's recommendation, because…well, because he's a doctor; and we weren't questioning doctors at that time.
As the story suggests, at its foundations, the evolving mentality represented by the interviewees was one that came to be characterized by skepticism for and eventually opposition to the claims of scientific and medical authority that had created developmental disability as an inflexible diagnostic category, and to the political elites and state administrators, such as judges and social workers, who translated science and medicine into public policy, committing people to segregated facilities removed from the world, where they might remain until they died. Other stories heard in the interviews reflected on a social selection process, overseen by local courts and juvenile authorities, by which poor children, orphans, or children from disorganized and socially isolated families were simply dumped at WSDC for want of any other place to place them. My interviewees told me that, in fact, only one of the residential buildings at WSDC housed profoundly disabled people who were unable to see to any of their own ordinary and basic needs. The rest of the resident population was a mix of people of a number of backgrounds and conditions, some of them actually with no diagnosed cognitive impairments at all, but physical disabilities such as spina bifida.
Those schooled in the hegemony of that institutional order came by this route to work for its undermining, which was not what was anticipated by the professors instructing them in graduate school. Several of them told me, with evident pleasure in their boldness, how they and their colleagues quietly packed community meetings held to discuss the placement of group homes in the neighborhood. The purpose was to see to it that there would be at least some people in the audience who could answer, from a carefully guarded position of professional knowledge, the frequently expressed fears of parents that a group home placement would inevitably lead to its residents being in a position to sexually abuse their young children or to engage in other types of criminality, such as home break-ins. In one way or another, all of the interviewees facilitated the process of deinstitutionalization: finding good locations for group homes or independent living, choosing individuals for relocation and working with them to prepare them for life in the community, and keeping in touch with them thereafter. Considering them friends, a former recreation director told me that he invited several of the residents of WSDC to his wedding. There were a number of such stories of friendships formed and maintained.
Of course, the professionals were not alone in losing confidence in and undermining this institutional order. Their evolving skeptical and eventually oppositional mentality was complemented by the evolving mentalities of new generations of parents of children diagnosed as developmentally disabled, who no longer accepted unquestioningly the views of overreaching physicians or social workers or judges; self-advocating people bearing the diagnosis and wanting to live in the community; politicians, sometimes with disabled family members, who came to be advocates for shifting public resources to the support of community living; muckraking journalists, such as Geraldo Rivera who broke the story of Willowbrook, exposing the actual living conditions of all too many people who were institutionalized; and disability activists who have led what would have been deemed in, say, 1960 , the most improbable of emancipatory civil rights insurgencies organized in the United States, and yet one of the most successful.
But the attribution of responsibility for undermining the institutional order is less the point I want to make than the larger meanings of this particular story for our ability to know the past and the paths by which the past becomes the present. I found in the evolving understandings of these professionals, as they were narrated in their interviews, more than a challenge to conventional thinking about developmental disability. Their testimonies illuminated the larger intellectual processes by which in the late twentieth century America one cultural orthodoxy about bodies and minds after another, whether involving sexuality, gender, or ability and disability, endowed with legitimacy through science and medicine and enforced by law and policy at midcentury, came to be questioned and then overturned. To be sure, this required a lot of struggle and the achievements are hardly complete, and some are quite tentative. But consider how worthwhile the path of this transformation has been for provoking needed change. Our expectations and aspirations have been greatly advanced, and imaginations and ambitions find possibilities that my parents, mid-twentieth century people, could never have imagined. Women work highway construction, train as astronauts, and go into combat. Gays marry, and raise children. Transgendered people are definitely "out," and their civil rights are coming to be protected. Men are "stay at home dads," while their wives advance their careers. Barrier-free environments and accessible transportation are the expectation and the right of people with disabilities. And all kinds of people have moved proactively to take as much control as is prudent of their healthcare by informing themselves, and changing how they choose to live.
The hegemony of science and medicine took hits from other directions as well – for example, drug regimes that caused fatal conditions, but were slow to be removed from the market; therapies that misfired and created tragic circumstances for those who had hopefully embarked on them; self-interested profit-taking by giant drug companies; and diagnostic categorizations that ultimately were found to rest on weak intellectual and empirical foundations. But what is important for me in this essay lies in the larger interpretive meanings of these developments. Historians who want to understand the tremendous shifts in cultural authority that characterized American society in the late twentieth century, by which people not only questioned authority but became empowered to actively challenge it and to live differently, need to start their inquiries, among other places, by looking at the revolution in our understanding of disability and the effect of that understanding on Americans' understandings of things beyond disability. That so much of that change was prompted in diverse ways, from public activism to simply living in the community, by people with disabilities themselves is self-evidently of the greatest importance to prompting that rethinking. I can't think of a better answer to the question, "Why do we need another 'Other'?" Catherine Kudlick asked some years ago, in her plea to the historical profession to understand the power for historians that lay within in disability as an analytical category. 4
But Kudlick's question is also a challenge to disability researchers. In urging us to be insistent on asking that question and providing answers to it for our skeptical colleagues outside the disability field, she also invites us to join an argument that connects us to larger conversations. In these conversations, we are also part of a larger community of scholars and intellectuals arguing about big problems in pursuit of knowing the world beyond disability itself. I want to see disability in the middle of those arguments, not ghettoized at their fringes, and that means each of us should seek not only to talk to one another, which is the easy part, but to find a place for ourselves commensurate with our ambitions to be central to the making and remaking of the world of ideas.
Baynton's essays and conference papers have become, Defectives in the Land: Disability and Immigration in the Age of Eugenics (Chicago: University of Chicago Press, 2016). https://doi.org/10.7208/chicago/9780226364339.001.0001
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The digital audio recordings of these interviews, part of an IRB-approved project (Michael Rembis, project director) at the University at Buffalo (SUNY), are available through the Center for Disability Studies at the University at Buffalo. All but one of my interviewees gave permission for their interview to be made public.
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Kathryn Lawton generously shared her research on WSDC with me as I wrote this essay. Her doctoral dissertation, "Deinstitutionalization and Disability Rights: Policy and Activism in New York State," done under Michael Rembis's direction for the History Department at the University at Buffalo, will be defended in the spring of 2017. Also see, Kathryn Lawton, "The West Seneca Development Center," (2013), an unpublished paper in the possession of David Gerber; and Denise Jewell Gee, "A Place One Called Home," Buffalo News, October 16, 2011, at http://www.buffalonews.com/city/article502101.ece.
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Catherine Kudlick, "Disability History: Why We Need Another 'Other'," American Historical Review, 108, n.3 (June, 2003), 763-93. https://doi.org/10.1086/529597
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