REFLECTIONS
Who's Not Yet Here?
American Disability History
Susan Burch and Ian Sutherland
In 1919 one Deaf man advised other Deaf people, "By and by maybe society
will recognize the fact that deafness is neither a crime nor a mental defect
which separates those so handicapped from the rest of mankind. But society
is a good deal self-contained and probably we will have to put up with the
snub until by gradual education society becomes enlightened."
~"Bide the Time," 1919
As with the experiences of many minorities in America, the story of disabled people in America
has remained, until recently, in the margins- one might even say in the locked wards of academic inquiry.
Beginning in earnest in the 1980s, Disability Studies emerged with and from the Disability civil rights
movement. The scholarship of Disability Studies reflects and responds to other social histories. In
America, race, class, and gender have been the dominant models for studying social history since the
19505. This classic interpretive troika has enabled scholars to produce invaluable materials and
methodologies, Their conspicuous impact can be seen in American history classes across the nation;
today, thankfully, it is inconceivable to write American history textbooks without including the important
ole of ethnic minorities, the working class, or women, Disability history is a natural extension of these
models, and it offers new analytical tools for exploring issues of identity.
In 2003, Cathy Kudlick, a historian at the University of California at Davis,
published a review article titled "Why We Need Another 'Other,'" partially as a response to critics of
social history and Disability history. Kudlick argued that Disability history "helps historians ask and
attempt to answer the overarching questions central to our mission as scholars and teachers in the
humanistic disciplines: what does it mean to be human? How can we respond ethically to difference?
What is the value of a human life? Who decides these questions, and what do the answers reveal?")
Disability history provokes these questions and more, as well as ideas for answering them. Indeed, this
essay intends to demonstrate that as a model of interpretation, Disability history represents the next-and a
necessary - dimension of historical scholarship.
Disability history offers provocative insights into the experiences of Americans and America. By
incorporating, expanding, and sometimes challenging traditional social models of interpretation in their
work, scholars of Disability examine the meaning of such fundamental concepts as identity, community,
citizenship, and normalcy from a cultural perspective. In the past two decades, interest in Disability
Studies, and within it Disability history, has taken root. Today, numerous universities in the United States
offer individual classes, undergraduate majors and minors programs, and even doctoral programs in
Disability Studies or history. The purpose of this essay is to outline the evolution of American Disability
history as a field of study, discuss its contributions to the discipline of history, and touch on some of the
challenges it poses and faces. How scholars study the past, and how we express our understanding of it,
tells us as much about who we are today as about the past itself.'
Until the 1980s, historical assessment of disability carne almost exclusively from outsiders:
educators, doctors, and policy makers. Most adhered to what we now call a medical model of disability.3
Simply put, this interpretation regards disability exclusively or primarily as pathology. Advocates of this
method examine and express disability as a defect or sickness that requires medical intervention in order
to cure the problem. A related approach has been the "rehabilitation model:' which views disability as a
deficiency that could be alleviated by professional, rehabilitative assistance.
4
In both of these paradigms,
disabilities, and all complications related to them, reside within the individual. They imply or state
explicitly that if an individual's disabilities could be cured, all related problems would also be cured. This
has
oad implications, to wit, disabled people are seen as dependent on the authority of the medical
profession--not just to "get better" but also to "be better."
The rehabilitation and medical interpretations by their very nature generally overlook the lived
experience of Disability and avoid very real factors. By focusing on the deficiency of disabled people,
medical interpretations view important issues like relationships to work, family, political participation,
and education mainly in terms of the condition of the person, generally neglecting the role of social, legal,
economic, religious, and political factors that affect the success or quality of life for
disabled individuals. Yet even while neglecting these social factors, many medical and rehabilitation
analyses about disability are themselves strongly influenced by them. What qualifies as disability? What
are appropriate accommodations for disabled individuals? What are reasonable expectations of disabled
people? Throughout our history, social values and cultural perceptions have strongly framed what
qualifies as a disability and have influenced the responses.
This introduces a more complex perspective: if Disability is socially constructed, how is it also a
lived experience? As Joan Wallach Scott demonstrated with the category and analytical tool of gender, the
two are not mutually exclusive. What it means to be Disabled in our society is understood through the lens
of the social category, and through the social construction, which is not less powerful and has no less
impact on Disabled people than if the parameters of the construct were true. The social construction
imposes its own set of meanings on Disability that affect the lived experience of the Disabled; it is also a
limited and prejudiced understanding of what a Disabled life can or cannot be, one that must be
challenged and
oadened by the lived experience. For example, what is the meaning of being blind? It is
society's constructed concept of Disability (and more specifically, of blindness) that gives a social
meaning to that experience, both limiting it and in some cases pushing its meaning well beyond the simple
condition of not being able to see. But the blind person acting in the world will confront time and again
the idea of blindness, the idea of disability, which becomes the nexus of the lived experience and the
social construction. It is our job as historians to understand how those meanings have evolved.
Inspired by the academic and sociopolitical trends of the civil rights era, a new generation of
historians began to look at the lives of disabled people and the factors that inform the meaning of
disability. Disability scholars argue that disability is a social construction, and some have summarized it
this way: disability is often less about physical or mental impairments than it is about how society
esponds to impairments. This is important for moving disability from what has been called the
"unglamorous backwaters primarily of interest to people in rehabilitation, special education, and other
applied professional fields."5 The social model of Disability in fact rejects the notion that people with
disabilities are inherently "defective" and solely in need of rehabilitation; rather, Disability is seen as a
common factor in life.
Demographics bear this out. According to the U.S. census in 1997, roughly one out of every five
Americans qualified as disabled. That is 55 million people; 33 million people qualified as severely
disabled. The numbers are probably much higher than this. And as Americans live longer, their chances of
eing at least temporarily disabled rise significantly. Yet the irony of disability is that it is both present
and absent. As Doug Baynton eloquently expresses it: "Disability is everywhere in history, once you begin
looking for it, but conspicuously absent in the histories we
write."6 Among the readers of this article, all of you likely have or had some kind of disability yourselves,
know someone who has a disability, or-and you are not going to like this-will become disabled at some
point in your life.
Using Disability as an analytical framework reveals much about our past. It challenges as
incomplete the classic American na
ative of self-reliance, individualism, of unlimited possibility for those
with skill and motivation. How can you "pull yourself up by your bootstraps" if you are unable to walk in
the first place? The question of how much responsibility the community has for those with a disability
speaks to the tension between charity and individualism, the relative roles of religion, community, family,
and government in caring for those who need care, and the problems of determining who needs care, who
provides it, and who determines how much and what kind. This also reveals more about the tensions
among local, state, and federal responsibility in social issues. A related question asks how to handle a
social benefit like education: who provides it, who pays for it, who decides what it should consist of? It
also confronts the ideal of the citizen: citizenship is predicated on the idea of rights and duties, but if
Disabled people cannot serve in the army, perhaps not pay taxes, or contribute [equally] to the economic
output of the nation, and perhaps cannot engage fully in the political discourse of the nation, does this alter
our view of their status, or our assumptions about full citizenship?
As a subfield, Disability history is still quite young. In its earliest phase, historical scholarship on
people with disabilities followed the path of women's and African American history; they were primarily
cele
atory and compensatory. Gerda Lerner once called it "add and stir history."7 Books like No Pity and
Deaf Heritage gave a human face to disabled populations, and they remain popular community histories.
8
Some of the works from the first generation depended heavily on documenting discrimination and
presented people with disabilities mostly as victims of oppression.
9
A look at the historiography reveals a
apid evolution to deeper and more provocative analyses.
lO
Case studies of specific populations of the disabled have been the bedrock of Disability history.
One especially provocative work is Steven Noll's Feebleminded in Our Midst: Institutions for the
Mentally Retarded in the South, XXXXXXXXXX°11 Noll uncovers the ambivalent expectations of cure versus
care fix institutions serving the mentally retarded. Asylums originally sought to aid mildly retarded
people, to help them become contributing citizens. Yet society at large also expected asylums to control
inmates, shielding it from their presence and supervising their behavior. Noll argues that the