What We Have Done

An Oral History of the Disability Rights Movement

Fred Pelka

• Publisher: University of Massachusetts Press
• Year: 2013
• ISBN:
  9781613762363
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Nothing about us without us has been a core principle of American disability rights activists for more than half a century. It represents a response by people with disabilities to being treated with scorn and abuse or as objects of pity, and to having the most fundamental decisions relating to their lives—where they would live; if and how they would be educated; if they would be allowed to marry or have families; indeed, if they would be permitted to live at all—made by those who were, in the parlance of the movement, "temporarily able-bodied."In What We Have Done: An Oral History of the Disability Rights Movement, Fred Pelka takes that slogan at face value. He presents the voices of disability rights activists who, in the period from 1950 to 1990, transformed how society views people with disabilities, and recounts how the various streams of the movement came together to push through the Americans with Disabilities Act of 1990, the most sweeping civil rights legislation since passage of the Civil Rights Act of 1964. Beginning with the stories of those who grew up with disabilities in the 1940s and '50s, the book traces how disability came to be seen as a political issue, and how people with disabilities—often isolated, institutionalized, and marginalized—forged a movement analogous to the civil rights, women's rights, and gay rights movements, and fought for full and equal participation in American society.

1
Childhood

THE IDEA THAT DISABILITY IS A TAINT, A STATEMENT ABOUT THE inherent worth or character of the person with the disability, works itself out most painfully on children with disabilities who absorb, often without knowing, this prevalent but generally unspoken judgment. It can be manifest in everything from schools with names such as “The Industrial School for Crippled and Deformed Children”¹ to run-ins on the street with complete strangers wanting to know “what’s wrong with you?” to a popular culture that routinely uses disability to denote wickedness (think of Captain Hook, Doctor Strangelove, and every malevolent fictional character sporting an eye patch, prosthetic, or facial scars).² This harsh social environment is then used to justify segregated education and even institutionalization, as when parents are told that their child needs to be “protected” from society, and will be “better off with her own kind.”

Disability has in fact often been considered so shameful, so deviant, that even to talk about it has been perceived as distasteful or demeaning. In interview after interview many of the major figures in the disability rights movement of the 1970s and ‘80s describe how their parents “never talked about” their disability. Neil Jacobson’s parents went a step further. Jacobson spent hours a day doing physical therapy in a vain effort to get him to walk. “I never had a wheelchair until I was in high school.… My father built a dog house for the wheelchair, because he didn’t want the wheelchair in the house. To him, the wheelchair was a symbol of disability. A symbol of pity.”³

Add to this the fact that many of these children needed (or were told they needed) surgeries or other treatment, sometimes painful, often requiring hospitalization or extended separation from parents and home. The result was that some children came to see themselves as essentially powerless, flawed, even unworthy of the love that “normal” children generally take for granted.

Of course, every child’s experience is different, and this isn’t to say that every person with a disability who grew up prior to 1970 lived a life of abject misery. (Nor does it mean that the advent of the disability rights movement has set everything right). But any understanding of the disability rights movement—why it was necessary, what it has meant, and why it took so long to happen—has to incorporate an understanding of how destructive these all-pervading social messages have been. Almost every activist with a congenital disability, or one acquired early in childhood, recalls both the insidious effect of this cultural environment, and the epiphany that came with understanding, finally, that the problem was out there—in society—and not in here, in his or her own character. For some, this realization would not come until they were well into adulthood. For many, it wouldn’t come at all until participation in some action—for instance the Section 504 demonstrations of 1977, or an ADAPT blockade of the late-1980s.

One response to this realization has been the development of “disability pride”—even what some describe as “disability chic.” Another response has been a sense of anger that has empowered many movement activists through much of their political lives.

“People talk about how some of us are very angry,” Ed Roberts told film maker Billy Golfus in 1997. “Of course we’re angry. We’ve been through the worst kind of atrocities, attitudes toward us that see us as vegetables, that see us as sick and unable and having no future. I mean that’s got to piss you off. And to me, anger is one of the best things we’ve got going in this movement. Because when you’re angry, that gives you a tremendous amount of energy.”⁴

Lee Kitchens
“The only little people that you saw anything about besides in the movies were circus performers.”

Lee Kitchens was a brilliant engineer who developed the first hand-held calculator for Texas Instruments in the early 1970s. He was also a little person—someone the general public back then would commonly call a “midget”—a label which is seen by little people themselves as a term of derision.

Born in 1930, Kitchens joined Little People of America (LPA) soon after its founding in 1957, and in the 1970s was a founding member of the Texas Coalition of Citizens with Disabilities. Kitchens died in May 2003.

In the thirties, short stature was a rare situation—as it is today—and you didn’t find many people of short stature out in public. Other people, other kids, adults, whatever, would make fun of you, make remarks, things of that sort. However, in 1930, when I was born, the treasurer of the state of Texas was a little person and my mother had a newspaper clipping about him. He was her role model, if you will. She never met him, didn’t know any other people of short stature, or any other parents that had a child of short stature. I never saw another little person until I was about sixteen.

Society pretty much had the idea that people of short stature could only make a living in some form of show business or the circus, and were essentially second class citizens. That was the perception and perception was reality. Many little people had been denied proper education and there-fore were either unemployed or unemployable.

In my immediate family they had a much broader outlook. My grandmother had a college education, so did one of my aunts and one of my uncles, and my mother had a year and a half of college. They understood that education was the key to the future, and so academic excellence was a requirement and you did what you had to do. You made “A’s” and anything less than an “A” was goofing off. You could get by with a few “B’s,” but a “C” was like an “F” and you just made sure that that never happened. I had an uncle that was injured in World War I, and he had to be supported by the family because he was unable to work in a physical way and did not have the education. So there was a good example of what happens if you’re not prepared to compete with your head.

My life in school wasn’t all that great. There was a lot of teasing, but I had a good friend who interceded for me whenever it was necessary. I guess the kids finally got used to you and unless you became a real worrywart or something, they would tolerate you. Things were a little better in college because there you had a better segment of the population, which were more likely to accept you for what you did, as opposed to what they saw. Then in the workplace you were measured by what you produced. They didn’t care whether you had three heads as long as you could do what’s needed. The younger years are the toughest and the teenage years are the hardest. That’s true for any kid.

I didn’t date until I was twenty-one and first started meeting other little people. A couple of times I attempted to and got turned down, and so you don’t put yourself in that position to be rejected, you just avoid it. I didn’t participate in the senior prom or anything of that sort. That’s not true today. In our little people’s organization some families would import another little person to be able to accompany a person to the senior prom. And of course at our national conference at least for one week out of the year you’re on parity with everyone else. An average sized person can feel very out of place at one of our meetings. That’s their problem, not ours.

People talk about self-image. I never gave it a lot of thought. I was always interested in things, you know, model airplanes, and wasn’t necessarily a people person. I guess that’s what led me into engineering. I knew I was different and there wasn’t anything I was going to be able to do about it. I just learned to live with it.

There was a guy about my age playing in the band in another high school, who was the first little person I met. But I didn’t meet him until I was eighteen. It was a cold reception because that guy—who I got to know later on—was the macho type in that he did his own thing in spite of his size. Initially I don’t guess he was very comfortable with me. Maybe it was like what it was like for a lot of little people, seeing yourself in the mirror for the first time. Later on I got to know him and we got the little people’s organization going and he married one of the little people. But still, I don’t think he really ever had his act together and later on he committed suicide. So I don’t think he ever really was able to accept himself for what he was.

There was some poor advice from the medical profession, ideas about putting me in casts for whatever reason. But you have to under-stand the medical profession didn’t have much exposure to short stature. They couldn’t even distinguish between one type or another, even though I was seen at the Mayo Clinic as an infant for a cleft palate, for which I had two surgeries. Still, the best advice from the family doctor was, “Take him home and treat him like you would any other child.” My parents did the best they could in that regard but still I didn’t get to do things at the same age as my sister did. I never drove a car until I was twenty-one because my dad assumed it couldn’t be done, and I had to force the issue, when I was in a position to equip a car and drive it whether they liked it or not. But that was at age twenty-one.

The only little people that you saw anything about besides in the movies were circus performers. When I went to college I did some research on the term “midget,” which was the only term I’d ever heard. The term “dwarf” came up, but there was painfully little information in the literature.

It’s funny when you hear in public, “Hey Momma, look at the little—!” and that’s all you hear because they’ve clamped their hands over the child’s mouth. But that goes on all the time. It’s human nature. I’ll never forget my son staring at a person in a wheelchair [who] just had one leg. I felt, “Golly, he’s been around so many little people!” But he hadn’t been around any people in a wheelchair with one leg. So it’s human nature and one of the things little people have to learn is that, Hey, people are naturally curious. Some are rude about it but some are just naturally curious. Some are discreet, some are not.

Corbett O’Toole
“The neck-up thing.”

Corbett O’Toole was raised in a large, working class, Roman Catholic family in Boston, Massachusetts, and experienced what she describes as the “separate realities” often experienced by children with disabilities. On the one hand she was viscerally aware of what polio had done to her body, and of the day-to-day realities of living with a disability. But she was also aware of what she called “a gentleman’s agreement” at home and at school to pretend that her disability didn’t exist. Of course, this “agreement” didn’t change anything about her body, nor the way the world at large responded to her as a girl who was “different” and “crippled.”

After finishing college she decided to move to California for the climate, a fairly common consideration for anyone who has had to manage crutches or a wheelchair in the snow and ice of a northeastern winter. She arrived in Berkeley in 1973, and soon became involved in “women’s stuff”—feminist consciousness raising and activism—and the nascent independent living movement.

Corbett O’Toole continues to live in California, where she remains active in the Disabled Women’s Alliance and the Society for Disability Studies.

I was born in August of ‘51 and by September of 1952 I had polio. I was paralyzed from my neck down. They put me in a full body cast that had slits on the side and my mother would take me out twice a day and exercise my muscles and then put me back in it. So I laid flat on my back or flat on my stomach from my neck to my toes in a cast from the age of one to the age of two and a half.

When I was two and a half they sent me away to a rehab center for six months. And what they did was to limit family visits to thirty minutes once a week. My parents could come to visit on Sunday afternoons. Otherwise they couldn’t come.

But it was where I learned to walk, where I got my first braces. I had two full steel leg braces and I got the trunk support with a corset. Then when I was three-ish, I was walking well enough that I could come home. I came home with crutches, braces, a corset, and night casts. By then my brother had been born and my mother was pregnant with my sister Patricia. So that’s the background of how it was growing up with my family—with some of the physical context.

My parents—my mother, particularly—really thought a lot about the options that I was going to have as a disabled kid. There were two different public elementary schools within walking distance. In Boston, another option was to send me to a school called the Industrial School for Crippled Children—that was the official name of it. It was across town. They bused kids in from the larger Boston metropolitan area. Basically it was a warehouse for kids that the local schools were refusing to accommodate. It wasn’t a public school in the sense that it didn’t have a quality education, it didn’t have science labs. It was a quasi-institutional environment. My mother decided that she was going to send me to public school. She called the local public school and they told her in the spring to come register for the fall. So she registered. She called them and said, “My daughter has polio, she walks with crutches.”

At that time the kindergarten classroom was in the basement with [the] mentally retarded classrooms. The other classrooms were upstairs. The kindergarten teacher freaked out about having a handicapped child in a regular classroom. She went off to Tufts University, which was a local educational institution, and took a class over the summer called “A Handicapped Child in a Regular Classroom”—probably in those days it was called in a “normal” classroom—to prepare for my arrival. So, I show up quite unknown to all of this stuff—doing okay. My mother had really worked hard with me on independence and I was totally taking care of myself—could go to the bathroom by myself, take a bath by myself, put my clothes on and off—you know, the kind of stuff that you need to know in order to survive. So I went to school and I was functioning pretty independently.

When the kindergarten year was ending, the principal went to my mother and said that I was not going to be allowed to continue in public school because there were stairs. You had to go upstairs to the first floor to get to the first and second grades. They had decided it was too dangerous for me to do that, and that it was inappropriate for me to be in public school anyway. They felt they didn’t have to accommodate a disabled kid, and that there was the Industrial School for Crippled Children if my mother really thought that having an education was important.

So my mother went home an...