Far from "helpless": How the Disability Rights Movement saved my life

Everyone seemed to think that polio survivors like me were powerless. Discovering the opposite changed my life

Published September 8, 2019 6:00PM (EDT)

Protestors from ADAPT, a grass-roots community that organizes disability rights activists to engage in nonviolent direct action, block the intersection of 15th Street and Pennsylvania Avenue NW near the White House for nearly four hours September 20, 2010 in Washington, DC. (Chip Somodevilla/Getty Images)
Protestors from ADAPT, a grass-roots community that organizes disability rights activists to engage in nonviolent direct action, block the intersection of 15th Street and Pennsylvania Avenue NW near the White House for nearly four hours September 20, 2010 in Washington, DC. (Chip Somodevilla/Getty Images)

Adapted from "Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride" by Nadina LaSpina. Copyright 2019 New Village Press.

In the summer of 1971 I made a phone call that saved my life.

I had decided to reach out to some disabled friends, after a long period of lethargy and hopelessness, which followed the suicide of my best friend, Audrey. I had met Audrey at the Hospital for Special Surgery, when we were both thirteen, right after my father succeeded in bringing me and my mother from our native Sicily to the U.S. His hope was that here I would get the medical care I needed, since I had contracted polio as a baby.

Though Audrey’s disability — spina bifida — was different than mine, the effects of our disabilities on our bodies were much the same. So were the negative messages that came from all around us. Our lives were seen as tragedies, our futures held no promise of happiness, because of our disabilities, we weren’t considered “real” women, we would never know love… “Such pretty girls, what a shame,” they said, and Audrey swallowed their lies — together with sixty Seconals.

At the time, though, I didn’t know those were lies. For quite a while I thought she had done the right thing.

I must have been looking for a lifeline, without even realizing it, when I reached out to disabled friends I knew from various hospitals. Most of our conversations were brief; I made no effort to see any of them. But the call to my old friend Susie — who, like me, had had polio — was different. She told me about a meeting of disabled people she was planning to attend. I had never even heard of disabled people having meetings. Susie said the name of the organization holding the meeting was PRIDE, which was an acronym—it stood for “People for the Rehabilitation and the Independence of the Disabled through Education.” A mouthful. I liked the acronym better than the full name. What was this meeting about? Getting special parking permits, Susie told me, so we could park where other people couldn't, like in "No Parking Anytime" zones.

“Far out,” I said.

I remembered Audrey parking her bright blue Mustang anywhere she pleased, even in bus stops. Her wealthy parents didn’t mind paying the tickets she always got. My immigrant, hard-working parents could not have afforded to pay for parking tickets. So I tried very hard not to get any. My car was a second-hand Mercury of an unappealing brownish color, but I felt lucky to be among the privileged—whose level of disability and of resources allowed us the freedom to get out on our own. Public transportation was totally inaccessible. So, many were stuck at home—or, much worse, in institutions.

Lately, I hadn't been getting out much. Most days, I couldn’t even manage to drag myself out of bed, to my parents’ profound concern. On those occasions, when I ventured out to keep an appointment with the psychologist I saw reluctantly to appease my parents, or to the library to return an overdue book, I often got so disgusted waiting and going around the block trying to find a parking spot, I just went back home and back to bed.

I had managed to graduate from St. John’s University, shortly after Audrey’s suicide; and I was supposedly looking for a job. But I had no expectations of finding one. No one wanted to hire a girl who wobbled at a snail's pace with ugly long leg braces and crutches. “Come back when you can walk better,” I’d been told more than once.

It was hard to silence Audrey’s voice in my head saying “why even try, what’s the use.” But at times, I would get dressed in loose pants that hid my braces, wash and brush the tangles out of my long wavy hair, and drive to a job interview, scheduled for me by the college placement office. I knew I had to give myself an extra hour to find parking.

"I’d like a special permit," I now said to Susie. "And I’d love to see you."

"There’ll be other people you know, and Judy Heumann will be there."

Judy Heumann. The name rang a somewhat rusted bell. Susie reminded me that she was the young woman who sued the Board of Education when she was denied her license to teach because she used a wheelchair. She had won her case, Susie said, or settled or something, and was teaching now.

After I hung up, I looked at the newspaper clipping, which I had scotch-taped to the wall above my desk over a year ago. It was starting to turn yellow. The headline read: “You can Be President, not Teacher, with Polio.” The reference was to FDR, the president who had contracted polio. I stood, leaning my hip on the desk, and read through the entire article. I remembered how excited I had been when I’d called Audrey to tell her about this young woman who, instead of going home and crying her eyes out like we would have done, believed in her right to pursue her chosen career, and decided to fight back. Audrey had not responded at all. A few weeks later she was gone.

* * *

The meeting was in the living room of somebody's house. I recognized a few faces when I walked in with my braces and crutches. There weren't many people there, I counted eleven; someone else might have come after me. Six were in wheelchairs. I was glad I wasn’t; there wouldn’t have been room for another one. I sat in a high-back dining chair. There were newspapers piled up on the table. Rather than listening to what was being said, I kept looking around me—dark heavy furniture, some pushed against the walls. I stared at a pretty girl with blond hair sitting across from me in a wheelchair. I wondered if Audrey would have attended this meeting. Why couldn't I stop thinking about Audrey? How could I make my mind stop wandering and start paying attention?

I recognized Judy Heumann from her picture in the paper. But I had expected her to look more formidable, like someone capable of taking on the Board of Ed. Instead, she was cute, bright-eyed, and small. Maybe she looked small because her wheelchair was big. She wore a fashionable peasant style dress with short puffy sleeves.

When the meeting was over, I decided to introduce myself to Judy.

"It's a pleasure to meet you!" She gave me a sparkling smile and held out her hand.

Standing with my braced legs far apart for maximum balance, I slid the crutch out from under my right arm, and grabbed it with my left hand, tightening the muscles of my left forearm to keep the other crutch secure under it. I was able to bend down just enough to give Judy's hand a hearty shake.

I wanted to ask: How did you muster the strength to fight back? How did you arrive at the realization that being denied a license to teach was an act of discrimination, when the rest of us accepted such verdicts as the inevitable outcome of being disabled?

But I didn't ask those questions. We talked about what had been discussed. The Department of Motor Vehicles only agreed to issue us permits to park in front of our schools or places of work. They didn't think we should have any desire for frivolous activities such as going to a movie or a restaurant. I told Judy I agreed with the people who argued in favor of holding a demonstration in front of the DMV.

“Then you should come to meetings of my organization. It’s called ‘Disabled In Action.’ We hold demos and do civil disobedience.”

“Okay!” I exclaimed.

I started going to meetings, both of PRIDE and of Disabled In Action. I liked DIA more than I liked PRIDE, which in spite of the great acronym seemed a bit tame. DIA meetings were often held in Brooklyn. But it was worth the drive. I listened in awe to Judy.

"It is not our disability that handicaps us, it is society that handicaps us. . . Disability only becomes a tragedy for us when society fails to provide the things we need to lead our lives. It’s a tragedy when we’re discriminated against, kept out, treated as inferior.” She spoke the most amazing truths in such a sweet-sounding, girlish voice. She was a true revolutionary, our Angela Davis.

I thought my parents would be happy I was going out, rather than staying in bed all day. But I could tell they weren't so enthusiastic about my interest in disability activism. Once, back from a meeting, when I started talking about Judy and some other disabled people I admired, my father interrupted me.

"I wish you'd make normal friends.”

His words felt like knives stabbing me. I went into my room slamming the door, threw myself on the bed and cried.

My mother knocked after a few minutes. I didn't say "come in" but she did anyway. She sat on the bed and stroked my shoulders. "Your father didn't mean it."

"Didn't mean what?"

"He didn't mean to imply you weren't normal."

I sat up in bed and yelled: "I don't care! Maybe I don't even want to be normal! Maybe I don't even like normal people!"

She put her arm around me and I shrunk away from her. "It's just that having handicapped friends makes it harder for you to get over... to forget..."

I turned around to look her in the eyes. "Forget what? Forget who?"

She said her name in a whisper. "Audrey."

I yelled even louder: "I don't want to forget about Audrey, I never want to forget about Audrey!"

* * *

My parents were really tickled though, when my picture, taken at the demonstration in front of the DMV, was in The Daily News. My father must have gone around to every local store and newsstand. Every relative, every friend, in the US and in Italy, got a newspaper clipping. In the picture I was standing with my crutches holding a sign I’d made the night before the demo.

I was very proud of my sign. Some had made fancy ones, using boards and markers of different colors, drawing pictures of cars. Mine was simple: block letters in black magic marker on white board. It read:





Susie couldn't stop laughing. She thought "man!" was funny. "Sooooo hippie," she kept murmuring, shaking her head.

But, hey, it rhymed. Others criticized my sign for being too general.

"This way I can re-use it," I conceded, "I'm lazy. I’d rather not have to make a new sign every time we have a demonstration."

But really, I wanted my sign to do more than demand a parking permit. I wanted those few words on that twenty-four square inch board to present, in a nutshell, what I saw as the big picture, our common struggle.

It was amazing to discover how similar our experiences were, once we started comparing notes. Until then, we had all considered our disabilities to be the problem. We believed we were supposed to “cope” as best we could. As we talked, we realized the disability itself was not that big of a deal for us. We had all learned to accept our physical limitations. What made life difficult was not the disability but the lack of services and supports, the lack of accessibility, the unfair and stereotypical ways in which we were treated, the pity doled out for us all our lives. Often, after a meeting, I wrote my thoughts down in a notebook. It’s not my fault that I’m disabled, yet I’ve been made to feel that it is, I wrote. My polio never made me unhappy, people made me unhappy. Ever since I was a little girl, people have always made me feel I was no good because I was disabled. From the Sicilian women and the nuns to the doctors who couldn’t fix me, to my fellow students and prospective employers… and even my own parents. As I wrote, my tears fell and stained the pages—tears of anger, of relief, and of new hope.

I was thunderstruck by the realization that as a disabled person I had "rights." This was a time of movements. I’d been hearing and talking and getting excited about "rights," and never before had it dawned on me that the same arguments could apply to me, to us, disabled people. There were rights for black people, rights for women, rights for Native Americans, for immigrants, for workers, for gays, there were even animal rights... But I’d never before heard anybody talking about rights for disabled people. They talked about benefits and cures and charity for us, not rights.

I got so fired up at the mere notion of disabled people "fighting" — instead of asking pretty please, instead of begging, and of sitting around wishing and hoping and praying to be cured. The news that we weren't "helpless," as everyone seemed to believe and as everyone wanted us to believe, was one that I wanted to shout to the four corners of the earth. The best I could do for the time being was print it in big black letters on a white board.

I got to reuse my sign a few times. When we went on a march to the UN, I rolled in my wheelchair — I could not have walked so far on my crutches — with the sign hanging around my neck, hitting my chin or covering my face when I went over a bump or a pothole. And I used it in October, when we blocked Madison Avenue to protest Nixon’s veto of the Rehab Act. About 80 people took part in that demo. We were even joined by some disabled Vietnam vets. Judy and a few others got summonses from the police. My heart was beating fast, but I wasn’t nervous, with the police all around us, just excited.

At other demos I had attended — against the war in Vietnam, or for women’s reproductive rights — I was the only disabled person, except when Audrey went with me when she was alive, and had to endure the stares and the pats on the head, and the warnings to be careful, and the “so sorry!” and “thank you for being inspirational!” all reminding me that fighting for a common cause didn’t make my presence any less of an oddity. At “our” demos, among so many disabled like me, I felt right, I felt strong, and powerful. Here we were all together as one, finally fighting back.

I loved using the pronouns "we" and "us" in contrast with the pronouns "they" and "them." “They treat us as if we’re sick, as if we can’t do anything.” “We won’t take any more of their bullshit.”

"But who are they? Who are these bad guys?" my father asked. He’d never had any trouble naming bad guys — the fascists, the greedy idle rich, the mafiosi, the corrupt politicians... It bothered him that my use of the pronoun seemed to include everyone who wasn’t like me and my friends — who wasn’t disabled.

"What about your mother and me? Do you think we're bad guys?"

Judy liked to refer to “us” as a minority. Like members of other minorities, we were treated as inferior, kept in the margins of society, denied equal rights and opportunities. However, in most minorities the children resembled the parents. Being disabled, I was different than my own parents. That realization made me want to cry.

"Of course you’re not bad guys, you’re my parents!"

I wished I could explain my feelings to my father. But how could I when I didn’t fully understand them myself. What I knew for sure was that it felt good when "we" succeeded and made change happen. And it felt good to belong, to be part of something… I wasn't sure what that something was, but I knew I wanted to be part of it.

# # #

Adapted from "Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride" by Nadina LaSpina. Copyright 2019, New Village Press.

By Nadina LaSpina

Nadina LaSpina is a prominent activist in the disability rights movement and has been arrested countless times for civil disobedience. You can find her in the streets with Disabled In Action, ADAPT, the Disability Caucus, and other groups. After teaching Italian for many years, LaSpina created and taught courses in Disability Studies at The New School. She lives in New York City.

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