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On the personal and political dimensions of

studying disability history

Paul Longmore

When I was a boy, I was taught that the way to deal with the not just physical but social consequences
of my disability was through personal overcoming of the limitations that were inherent in my
disability, or inherently a result of it. I was supposed to manfully, cheerfully--that was especially
important--transcend, triumph over the adversity that had befallen me. It was an individual

I was also supposed to do this by keeping my distance from other people with disabilities. If you want
to be socially legitimate, the last thing you want to do is be identified with or seen with the people that
are stigmatized, who you want to escape. None of the members of my family had a disability, I didn't
know any people with disabilities except the other kids in the hospital, and once I got out of the
hospital, since the last place I wanted to be was anyplace like the hospital, for a very long time I tried to
stay away from places where there were other people with disabilities, except of course I was--when I
finally got back to school, I was put in a special education class for several grades. So that sort of
defeated my desire to distance myself.

At the end of sixth grade, the special education program in our town ended, there was no special ed
classes beyond sixth grade, so the conversation was should I be bussed to another school district, to go
to a special ed junior high school. Ms. Gustavson, my special ed teacher, and my parents didn't want
that to happen; they wanted me to go to the junior high school that was a block from my home, so Ms.
Gustavson, who had been teaching in the district for years, used her influence, and the junior high
school reluctantly agreed to let me come to enroll there. They didn't really want me. They had allowed
one other boy with a physical disability to go through the junior high two years earlier. His name was

And one day at the end of sixth grade, Miss Gustavson called me over to her desk, and she said, "Paul,
you and Mike have got to succeed. If you don't, they won't give these other children a chance." I already
knew what she was talking about. I've told that to some people, who thought what a hideous burden to
inflict on an eleven-year-old. But it didn't feel like a burden; it felt like the truth. It was the reality that I
was already aware of. Everything I did was going to have

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ramifications for other people with disabilities. And the fact was that from then on, most of the time
through the remaining years of my education and all through my professional career, I was typically
the first and often the only person with a disability in those places, so everything I did was sort of a
precedent that would have implications for people who might follow after me if they got the chance.

I told that to my parents. My poor parents. Nobody taught them how to raise a kid with a disability.
Nobody explained to them what I was really up against. They were told it was all physical stuff, you
know, how to dress yourself, how to feed yourself. Nobody told them that the biggest problems were
going to be problems of prejudice and discrimination. So when I said things like, you know, "So-and-
so's prejudiced against me," my parents said, "Oh, no. No. You're too critical. People are nicer than
that." I think the reality was my parents understood that that was the reality, they just didn't know
what to do about it. They knew they couldn't protect me from it. They came from outside the
experience, although in a way they were inducted into the disability experience in their own way, the
way that family members often are, and they--they were just bewildered, they didn't know how to fight
this. Of course, what I needed them to say was, "We'll fight it together. We don't know what we're going
to do, but we'll be in it together." But they didn't say that. They just said, "You're wrong."One of the
other things that happened at about the age of eleven was I began to realize what I had sensed
underneath the surface for--well, ever since I got polio--that there was a deep stigma attached to my
being a person with a disability, that I was encountering a great deal of devaluation and prejudice, that
adults were treating me as though I were fragile. I remember at the age of about twelve thinking,
"You're treating me like I'm fragile? I've been through more in my life already than you'll probably ever
go through." They didn't criticize my work, so I didn't get honest feedback, and I came to understand
this all as a form of prejudice. I didn't have that word yet, but within a couple of years, by the time I
was into my teens, that was the word that I latched on to. That was the term that described my
experience; I was encountering prejudice because of my disability. I was being discriminated against.

And it was literally decades before I met anyone who told me I was right, and one day I met someone,
and I said, "I think people are prejudice against me because of my disability," and she said, "You're
right." She was the first person in my life who ever said it. And I said, "I don't know if I can endure it,"
and she said, "You might not be able to." And that's when I knew I could, because somebody confirmed
the validity, the accuracy of my perception, and I wasn't alone.

Starting at about the age of eleven, something else happened. For some strange reason that I didn't
understand at that point, I got very interested in what African Americans were doing in the civil rights
movement. I started following that movement avidly. I identified very strongly with it. Come to find
out years later that many disability rights activists had earlier belonged to other movements or been
supporters of other movements, the women's movement, supporters of the civil rights movement, the
antiwar movement. We all sort of cut our teeth on other movements, because there was no place for us
to go. Nobody was yet talking about our issues, what we were experiencing. It wasn't legitimate yet,
there was no--there were no sites where we could analyze these things together. We had no
communities, really, most of us. Most of us were like me, isolated, separated.
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I continued to encounter prejudice and discrimination when I was a senior in college. One of my
professors told me to forget about going to graduate school in history, because he said, "No one will
ever hire you as a college teacher." When I was working on my master's degree, the chairman of the
history department said, "You'll do well in graduate school, because you're not bitter like most cripples.
But forget about graduate school. Nobody's ever going to hire you."

At the end of my first year of my Ph.D., I applied for a fellowship from the history department at my
school. I was turned down. I asked for a meeting with the committee. I knew why they had turned me
down. I wanted them to have to say it to my face. They did, unhesitatingly: "No one's ever going to hire
you." Basically, they said, "We don't want to waste any money on you. We think you should go into
archival work." I said, "Archival work is more physical than teaching." Maybe they just wanted me out
of sight. I don't know.

I said, "Look. I want to teach, and I'm going to do it whether you support me financially or not." And
they said, "Oh, well, we're sure you'll succeed, because we really admire your courage." I didn't have the
temerity at that point in my life to say, "You know what you can do with your admiration? I need your
money." But they were right about one thing: Nobody wanted to hire me, not for a long, long time. And
still, I didn't have contact with other people with disabilities.

Nonetheless, on my own, in my own kind of groping, struggling way, I was trying to figure out this stuff
out, trying to understand my experience, and I remember even saying to people in the late sixties,
"Some day people with disabilities are going to have a civil rights movement, too." Actually, there was
one. I just didn't know about it, because it wasn't getting enough, or a lot of attention. The guys here at
Berkeley were already doing it together. I was struggling alone down in L.A.

But finally, in the late seventies and early eighties, in Los Angeles, I did get involved with the local
disability community, with local disability rights activists, and I finally finished my Ph.D. in early
American history, and I ended up going to work at USC for a while, working with a political scientist
there, to develop disability studies. We didn't call it disability studies at that point, but that's what it
was, it was the beginning of disability studies. And I thought, "You know, I should apply my training as
a historian to understanding the history of disabilities." So I began to delve into that, and it's been one
of my main areas of work since.

I discovered some important things. One is that it's not a new thing, it's not a recent thing historically,
for people with disabilities of various kinds to bind themselves together, to join together collectively, to
try to alter our status in society, to try to get control of our social destinies. In fact, there's a fairly long
history in the modern era of that process, and one of the questions I started to ask was, as a historian,
"How did these movements emerge? What were the situations historically that made it possible for
people with disabilities to address the kinds of questions that we're addressing now?," that I had been
addressing individually and privately, personally, questions about identity, but also issues questions,
because one of the things I struggled with all through these years was how public policies, such as
S.S.I., in-home support services, all the things many people with disabilities struggle with--how do I
escape the trap that those policies have been

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designed to keep me in, to prevent me from becoming a productive member of society? It turns out
that people with disabilities had been dealing with both issues and identity for a very long time.

And the ways in which those movements had emerged were interesting. For the most part, people with
disabilities do not have the same kind of organic communities that have characterized--I'll say African
Americans. Like some other movements, people with disabilities had to come together consciously and
deliberately, except in our case, it was often not initiated by us, but by benefactors. So, for instance, in
the nineteenth century, residential schools were founded for deaf people and also slightly later for
blind people, and within those schools for the first time, people who were deaf or blind who otherwise
would not have had contact with one another were drawn together and formed into an educational
community. Now, it was definitely not the intent of these hearing or sighted educators and benefactors
to create these people to fashion them into some sort of political movement. They thought they were
helping, they thought they were going to make it possible for these people to--to be rehabilitated in a
way, so they could be assimilated into the larger society.

One unforeseen consequence, the major one, was that social networks of deaf and blind people formed
within these schools, and these individuals, these communities of schoolmates, decided when they
graduated they wanted to continue their friendships, their relationships, to continue their mutual
support. So they formed alumni associations and clubs and, in the case of deaf people, churches and
newspapers and publications that kept them in touch with one another. Gradually, over time, these
various kinds of social organizations began to take up political and policy issues, issues of how society
treated members of the group. They politicized themselves and they began to become activists about
lobbying, regarding legislation and public policies, and they began to address issues of prejudice and
discrimination collectively.

I helped to rediscover a forgotten group, a small group from New York City in the mid 1930s, the
League of the Physically Handicapped. They had a similar experience to the experiences of those
people in the schools for deaf and blind folks; they had been schoolmates in special education classes,
they socialized together at camps and at recreation centers, and out of these social networks they began
to develop among themselves oppositional consciousness; that is, their own distinct analyses of their

And in particular, the members of the League of the Physically Handicapped--most of them had polio--
began to address discrimination in the WPA in the depths of the great depression and militantly began
to contest policies that categorized them as unemployable and excluded them from WPA jobs. The
interesting thing is the associations of deaf people in the same era were contesting the same policies,
but the League of the Physically Handicapped and the deaf associations never joined forces. They
didn't identify with one another, and they apparently didn't want to be identified with one another. So
what we have is a series of histories of disabilities of specific groups. And we're talking about pivotal

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One of the major turning points came in the last quarter of the twentieth century, and that was the
growing sense among some activists that in fact these separate groups should not be lobbying in
competition with one another or separately from one another but that in fact there was a common, a
collective disability experience as a collective minority and that people with all sorts of disabilities
should join together in solidarity.

Now, one of the results of this is a kind of universalistic disability identity that does not obliterate but
in a way transcends at a different level the distinctive separate identities of different disability groups, I
don't think anybody would have predicted the emergence of this kind of cross-disability political
coalition-building or a sense of the universalistic disability identity and common interest. That's a
pivotal change, I think.

I want to touch on one other thing. I'm talking too long, but I'll just mention it briefly, and maybe we
can come back to it, because I think it's really significant.

This intriguing idea of commodification of identity definitely applies to people with disabilities. I'll just
say two--two short phrases: poster children and Christopher Reeve. People with disabilities in fact for a
very long time have been used as commodities to do several things. One, to promote the professional
interests of people in disability-related occupations; two, to be profitable. Especially the people in
those occupations and institutions, but more broadly, people with disabilities have been established as
literally embodiments of either certain kinds of values that the culture, the dominant culture, disdains
or that it wants to uphold. The poster child, as dependent, as helpless, is the epitome of the antithesis
of what an American ought to be, someone who's lost control of his or her destiny, whereas people with
disabilities who triumph, like F.D.R. or paraplegics who climb mountains--I'm waiting for a deaf/blind
quadriplegic to surfboard to Hawaii; that'll be a real triumph--they are the epitome of the American
myth that one can control one's own destiny despite the worst kind of adversity.

I'll stop here and we can open up the conversation.

About this text

Courtesy of The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000;
Title: Intersections of Civil Rights and Social Movements: Putting Disability in Its Place
Date: 2004 (issued)
Contributing Institution: The Bancroft Library. University of California, Berkeley. Berkeley, Calif.,
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