Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

After all the nos, all the people who’d said, “No, Judy’s not welcome here,” and all the fighting, I was finally graduating from high school and had been accepted at Long Island University.

Wait a minute. Just leave Judy down here in the front row. She doesn’t need to be onstage.”

It was obvious. The principal did not want me on the stage. I felt nauseated.

“I am going to take Judy up the stairs and put her on the stage,” he told the principal, enunciating every word slowly with a deathly calm. “So she can receive her award on the stage. With all the other kids.” I froze and looked at the principal. What would he say?

“You are not going home. You are going to stay here. You are going to sit on the stage and receive your award. You worked hard. It is your award and you deserve it.” He climbed the rest of the steps to the stage and pushed me to a spot on the stage.

He might be acquiescing to my father, but he wanted me in the back. He did not want me to be seen.

“I belong here,” I repeated to myself silently.

Friends had warned me about Rehab’s take on what they considered realistic careers to be for disabled people.

Preemptively I called the American Civil Liberties Union. “I’m

I had already spent years commuting to elementary, middle, and high school, which was partly what contributed to my feeling so alienated from my fellow students in high school—I did not want that again in college.

I was confused and heart-wrenchingly sad to the point of numbness. I just couldn’t understand what I had to do to be seen as an ordinary person.

I recognize now that exclusion, especially at the level and frequency at which I experienced it, is traumatic. Although at the time it didn’t feel out of the bounds of my normal, everyday experience—I can see that constantly coping with it definitely impacted me and it never stopped being painful. Interestingly, though, my reaction to being left out was not to become angry or aggressive toward people, which is a common reaction to feeling excluded, especially when you feel you lack control over your life. Perhaps this was due to the fact that because I didn’t accept my lack of control, I didn’t accept the idea that we couldn’t change things. Nor did I internalize the exclusion and attribute it to an internal deficiency on my part. I just didn’t at all accept feeling permanently left out of the world.

We were beginning to see our lack of access as a problem with society, rather than our individual problem. From our perspective, disability was something that could happen to anyone at any time, and frequently did, so it was right for society to design its infrastructure and systems around this fact of life.

Wasn’t it the government’s responsibility to ensure that everyone could participate equally in our society?

I just couldn’t bring myself to believe that I’d be treated fairly. Nothing about school had ever been simple or routine for me.

Years of managing my feelings in the face of bold stares and invasive personal questions had honed my ability to keep a calm front.

I was past tears. Fury churned in my chest. I’d worried that something bad might happen, called the ACLU, tried to plan for every possible outcome, but had never thought of anything like this. This was beyond what I ever could have even imagined. I was shocked and disgusted. I felt totally alone. She could do anything she wanted to me, say anything she wanted to me, and there was nothing I could do about it. There were no rules. No boundaries. This was what discrimination felt like.

Three months later, the letter arrived in the mail: the New York City Board of Education had determined that I was unable to teach. It wasn’t a surprise. The reason: “Paralysis of both lower extremities, sequela of poliomyelitis.” I was officially considered a danger to children because I couldn’t walk. I wasn’t contagious, but somehow I’d been deemed a contaminant. It didn’t matter how smart or capable I was, or how good my grades were, or how much experience I had. None of that mattered to the Board of Ed. Because I couldn’t walk, I wasn’t considered qualified teach second graders.

I KNEW I HAD TO FIGHT THE BOARD OF ED, but I was insecure and uncertain what to do.

Could I really stand up and publicly demand the right to do something I’d never done before? Did I have the right? So many people would be watching me, wondering—could a woman in a wheelchair teach? What if I won this fight and then turned out to be a lousy teacher? I’d fail in front of everyone. If I wasn’t successful at teaching, would people think that no one with a disability could teach? Would that ruin it for everyone? If there were thousands of us teaching, no one would notice one bad teacher, but if I was the only one and if I failed—what would that do to people’s perception of disabled people? Thinking about it made me feel sick.

We’d been expecting that I might be denied my license, and as soon as it happened my friends encouraged me to fight. We knew my case could be an example. It could raise awareness of our issues. I believed all this, but just because you believe something is right doesn’t make it any easier to do. Knowing what I should do didn’t mitigate the intense fear I felt in my body every time I thought about it. But if I didn’t fight, who would?

I racked my brain for a way to convince the ACLU representative. The problem was, I had no recourse. Disability wasn’t covered at all in the Civil Rights Act of 1964. The Civil Rights Act was intended to end discrimination on the basis of race, color, religion, and national origin, but made no mention of disability. There was no law I could quote or legal precedent to cite. If I’d been covered under the Civil Rights Act, I could have hung up and called the Equal Opportunity Employment Commission, which had been created by the act. But there were no disability rights organizations. My only option was to try to persuade the man that discrimination against disabled people existed. I was so frustrated I wanted to cry. Instead, I forced myself to get very calm. He had to listen to me.

Even the ACLU was a closed door to me. Why was I constantly being forced to knock on doors where I wasn’t welcome?

THE ACLU‘S REACTION cemented my decision to fight. If even the ACLU couldn’t understand how the Board of Ed’s actions were discriminatory, then we had to blow my story up. We had to use my case to make it crystal clear that the barriers we faced to education, employment, transportation, to just living our lives, were not one-off problems. They were not medical problems to rehabilitate. We were not medical problems. I was never going to undo the damage polio had done to my nerve cells and walk again, nor was this my goal. The disabled veterans coming home from the Vietnam War were never going to grow their limbs back or heal their spinal cords and walk again. My friends with muscular dystrophy were never going to not have been born with muscular dystrophy. Accidents, illnesses, genetic conditions, neurological disorders, and aging are facts of the human condition, just as much as race or sex. So allowing schools and employers and city councils to design policies or buildings or buses in such a way that we couldn’t participate was a violation of our civil rights. Which the government had a responsibility to protect. But it wouldn’t happen—the government would not take any responsibility—unless we made it impossible for them to ignore us.

But I was beginning to learn something very important: when institutions don’t want to do something, to claim that something is a “safety” issue is an easy argument to fall back on. It sounds so benign and protective. How could caring about safety possibly be wrong or discriminatory? It’s hard to argue against “safety.” Everyone wants to feel safe; it’s a basic human need.

WHEN I GOT OLDER, I learned how truly lucky I was to have had Constance Baker Motley as the judge on my case. At the time I had no idea of the role she’d played in the civil rights movement. The first black woman to graduate from Columbia Law School, Constance Baker Motley, in 1950, prepared the draft complaint for what would become Brown v. Board of Education. She was the only woman on the NAACP legal team for Brown. She’d also represented the freedom riders, who were integrating public transportation in the Deep South, and numerous plaintiffs who were integrating whites-only colleges. And she was the first black woman to be elected to the New York State Senate, after which she became the first black woman appointed to a federal court, which is when I met her.

When I think back, I am in awe at how differently things could have gone if I had given in to my fear and insecurity. What if I’d just let the issue go because I didn’t want to make a fuss? To begin with, I never would have known whether I was able to teach. Even more important, I would have been accepting what the system was telling me about who I was and what I could do. Even if I’d lost the court case, just bringing the case would still have changed my life because I stood up and told the system that it was wrong about me. I was fighting for what I believed in. The fact that I did win validated my perspective on our issues, which was that people with disabilities do face discrimination, and if we take the time to fight, we may win. Later, the State of New York passed legislation to ensure that people who are blind or physically disabled are not prevented from teaching. The other thing that happened in the aftermath of the court case was that my friends and I decided to organize a civil rights organization: an organization run by and for disabled people.

When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with.

No otherwise qualified handicapped individual in the United States, as defined in section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.

Someone in Congress finally understood what we’d been saying: that our being denied entrance to school, or teaching credentials, or any of the thousands of other barriers we regularly hit, could not, should not, be dismissed as medical issues.

What if I had never had to experience being denied entry into school? What if I’d never had all this self-doubt planted in my brain? From some buried place inside me, tiny tendrils of confusion, hurt, and shame loosened, rising to the surface—the feelings that lingered from my childhood, that came from never being able to understand why. Why couldn’t I go to school with my brother and my friends? It had never made sense to me. This was the why. This discrimination, that people always insisted didn’t exist, that people tried to wash away by saying they didn’t mean it, they didn’t understand, they didn’t know what to do.

health and quality of life could not just be about medical care, but needed to include the vast array of needs required to lead a healthy life—accessibility, housing, education, employment.

One of my contributions to the board was to introduce the idea that disability was a natural part of the aging process; thus, the fact that people acquire disabilities as they age should be accommodated, so people can remain active in the community.

The law would have no teeth without enabling regulations that would instruct the other federal agencies and institutions how Section 504 was to be interpreted and enforced.

“Close down special-ed schools and get disabled students into regular classrooms!” I advocated. “What can we do to make sure that disabled students will actually be expected to learn?” I was smack in the middle of the action and it was becoming increasingly clear that my background and activism gave me knowledge and expertise that others didn’t have.

Of course I was also doing a lot of the kind of daily grunt work you do in those jobs, such as answering letters and prepping materials. But my thoughts and opinions were being valued, and this shifted the ground beneath my feet.

“Ma’am, you’re under arrest. Please leave your seat.” They looked and sounded very serious. But all I could think was, Wow!! This is amazing! Finally, they’re going to arrest me and we’ll be able to do something with this to show another example of discrimination! So they took me off the plane. Once we were in the airport, they asked for my ID. I didn’t have a regular ID because I didn’t drive, so I gave them my credit card—which was new, by the way, since women couldn’t apply for their own credit in the US until that very year, 1975. When they said that wasn’t good enough, I gave them my Senate ID card. As soon as they saw my Senate ID, they paused. “You work in the Senate?” “Yes, I do.” They exchanged a glance. “Who do you work for?” “Senator Harrison Williams.” Their faces shifted; they no longer looked threatening. “Harrison Williams from New Jersey?” “Yes.” They were Port Authority police, which meant they worked for both the State of New York and the State of New Jersey. “Well, ma’am, we’re going to let you go this time.”

I brought a case against the airlines. When we went to court, the judge said I had a history of being litigious and I’d set everything up intentionally. He basically threw the case out, saying it wasn’t discrimination. Of course I had no recourse. We appealed, but the case was remanded back to the first judge. He said that the case wasn’t worth more than $500, although at the end of the day we settled out of court for a lot more.

Right there was our catch-22: Because the country was so inaccessible, disabled people had a hard time getting out and doing things—which made us invisible. So we were easy to discount and ignore. Until institutions were forced to accommodate us we would remain locked out and invisible—and as long as we were locked out and invisible, no one would see our true force and would dismiss us.

The government could be very good at placating and pretending to be acting, when they were actually just stalling until the public eye got distracted.

We needed something short and catchy. Kitty had an X-Acto knife that she was using to cut little plastic letters out of a mold. But how do you boil a complex issue down into a few words that will get people to come out and protest? We were totally cracking up, just losing it. Is this how change actually happens? Does everything start at someone’s kitchen table, brainstorming slogans at midnight, cutting rickety little plastic letters out of a mold?

was quite happy to see we had a cross section of disability and a good degree of racial representation. The Reverend Cecil Williams, who was African American and the cofounder of Glide Memorial Church, had spoken first and the other speakers were following one by one: Tom Hayden, a civil rights leader who would later become a congressman; feminist Sylvia Bernstein; a representative from the Black Panthers—each building on the energy of the next. I loved that our work supporting the causes of African Americans, feminists, unions, the gay community, and other civil rights groups was paying off, and they were now supporting us in return.

“When they are signed, the regulations for Section 504 will be an historic and monumental first step toward knocking down the walls that stop us, people with disabilities, from being full and equal participants in society. “For the past few years”—I choked up, paused and looked down; the crowd was utterly silent—“we have played by the rules.” I took a breath, trying to get ahold of myself. “We created the American Coalition of Citizens with Disabilities. We attended meetings in Washington, commented on drafts, and spoke with institutions all over the country. We were told Jimmy Carter’s administration would sign the regulations, unchanged. We believed him. “Now Secretary Califano is dragging his feet. We have no reason to trust him. We are here to say enough is enough. “For too long, we have believed that if we played by the rules and did what we were told, we would be included in the American Dream. “We have waited too long, made too many compromises, and been too patient. “We will no longer be patient. There will be no more compromise. “We will accept no more discrimination.”

“So I come before you now as an artichoke, prickly on the outside with a big heart on the inside,”

Maldonado leaned back uneasily in his chair, with a guarded look. His light-colored suit was tight across his shoulders, a white polka dot tie resting on his chest. Behind me, more demonstrators packed themselves into the office. The room hushed with attention. “What is Section 504?” he asked.

I explained again. Exasperation slipped into my voice. Joe Quinn stood behind me, interpreting in sign language. The entire floor listened. But it was true. Neither Maldonado nor his staff had any clue what I was talking about.

Hot fury consumed my body. This might just be a job to Maldonado, but his job affected people—every single person in his office and millions more. Did he not understand that? With an icy calm, I bombarded Maldonado with question after question, asking why they were watering down the regulations, what changes were being proposed, why the department wasn’t involving the community in the changes, when the regulations were coming out.

Maldonado looked at us. Perhaps he looked at us and saw a room full of people he could dismiss if he stared us down long enough. Then he got up and walked out of the office.

“We need you to stay with us in the building until the government signs the regulations for 504!” I told the crowd. “Please consider staying. We belong here.”

For people with disabilities, a sleepover is not as simple as tossing some sandwiches and a toothbrush into a backpack. In addition to personal assistance, a fairly high number of us also require various types of daily medications and have things like catheters that need to be changed, or the need to get turned at night to avoid bedsores. Many people, of course, had come without a personal attendant, any kind of food, or even a toothbrush.