Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

For any story of changing the world is always the story of many. Many ideas, many arguments; many discussions; many late-night, punchy, falling-apart-laughing brainstorms; many believers; many friendships; many failures; many times of almost giving up; and many, many, many people.

For me, a curb was the Great Wall of China.

It didn’t occur to me then to think it unusual that I joined in all the kids’ games in my wheelchair. Because there was never a question of whether or not I would play, too—we all figured out a way for me to do whatever everyone was doing. Even when we jumped rope or roller-skated, we figured it out. We’d put roller skates over my shoes and I would pretend to be skating in my chair, or I’d turn the rope for the jumpers, or play in some other way. I didn’t know anything different. Now I know that this was the way it was because we were kids, and kids are problem solvers. But it taught me, at a very early age, that most things are possible when you assume problems can be solved.

I saw myself through his eyes, and the light around me shifted. Shadows emerged from the corners of my mind; previously submerged words, thoughts, and half-heard conversations tumbled into the glare of a spotlight.

I was different. But I’d always known that. It wasn’t that. It was the world and how it saw me. The world thought I was sick.

We were learning that despite what society might be telling us, we all had something to contribute:

“disability culture” is really just a term for a culture that has learned to value the humanity in all people, without dismissing anyone for looking, thinking, believing, or acting differently.

We were drunk on the freedom of not feeling like a burden, a feeling that was a constant companion in our lives outside of camp.

But the bottom line is this: My mother worried when my needs became a burden. So I thought of myself and my needs as a burden too. I just kind of accepted it.

the parents needed us kids to adjust and accept not participating—and we learned to do this. We accepted that our inclusion was dependent on someone else being “nice.”

asking people to do something for you when you’re not paying them or they’re not required to do it in some way means that you are asking someone for a favor. And doing favors for someone gets old. Favors mean that someone has to stop what they’re doing, whatever it is, in order to help you with what you’re doing, which always feels like an interruption, an intrusion.

At camp I didn’t have to worry about what I needed, or how much help I could ask for at one time. I didn’t have to secretly rank what I needed in order of importance so as not to ask for too much at once. I didn’t have to feel that bad feeling I got when something was inaccessible and someone said no to something I knew I could have done myself if my whole world had been accessible. Camp, I thought, was what it would feel like if society included us.

When kids looked at me, I felt like all they saw was my wheelchair. Nothing else. They weren’t even ignoring me; I could tell by the way they looked right through me. They just didn’t even register my presence. It was as if they unconsciously categorized me as a nonentity.

Even though I was used to asking for help, I didn’t like asking for help. I always felt as though asking for help meant that I wasn’t doing something well enough for myself, even though I was physically unable to push myself to class or up a step.

I did a lot of planning, thinking about what I would drink, who would be around to assist me if I had to go to the bathroom, and whether they had a test or something else that made them unavailable. In fact, I still do a certain level of this today to be sure I don’t get caught out with no way to go to the bathroom,

I recognize now that exclusion, especially at the level and frequency at which I experienced it, is traumatic.

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?

Yes, I missed being on campus, but there was something freeing about being able to connect with people and participate in class without having to constantly worry about asking for the favor of a push or help to the bathroom.

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.

What would you say to prepare someone for the fact that they would always be treated as an object of disease? As something less than human?

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.

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.

the government would not take any responsibility—unless we made it impossible for them to ignore us.

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 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.

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.

The Center for Independent Living (CIL) was the first of its kind in the world, Ed explained. Like Disabled in Action, it was focused on empowerment but it combined its work with policies and services that allowed disabled people to live independently.

The State of California provided financial support for disabled people to hire personal assistance, so they didn’t have to be dependent on roommates and friends, as I was in New York. And the Center for Independent Living represented a community that could help me figure out how to access everything I needed to be on my own—like how to find an accessible apartment, where to repair my wheelchair if necessary, and how to actually advertise for and hire a personal assistant, which I’d never done before.

Personal-assistant work was respected in Berkeley, and it wasn’t difficult to find people. It was a strange and amazing feeling to be able to interview and hire people whose explicit job was to help me in the specific ways and at the specific times I needed it. I hired someone to come in the morning and the evening, and then I had someone to act as backup if my regular person didn’t show up on a Friday or Saturday night. As a result, I got to decide when I wanted to get up, when and what I wanted to eat, and when I wanted to go to sleep. I could go out on Saturday nights without worrying about how I’d get to bed! The fact that Berkeley was a small, compact city gave me the freedom to move around by myself.

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.

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.

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.

Both of us had had the experience of being ignored many times in our lives. We knew how it worked. 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.

Sometimes I marveled at the ease with which other people navigated curbs like they were nothing, whereas, to me, a simple twelve-inch curb was a complete dead end.

Our whole lives we are told what we can and cannot do. But know this now: what we are trying to do here is possible. “Only we decide what is right for us.”

We who had come of age under the influence of Rosa Parks and Dr. Martin Luther King Jr., not to mention Gloria Steinem and the United Farm Workers, knew we were a band of underdogs fighting powerful institutions. If we didn’t speak as one voice we’d never win.

People had to get out of the habit of thinking “I can’t get up the steps because I can’t walk” and get used to thinking “I can’t get up the steps because they’re not accessible.”

The most remarkable thing about our buildingwide meetings wasn’t their length, however, but the culture of listening that developed. No matter how long it took for someone to talk, we listened. Every one of the now one hundred and fifty protesters would listen in a perfect and beautiful silence. When Hale Zukas pointed out one letter at a time on his board with the makeshift pointer stick attached to his head, the room swelled with a gracious quiet. We treasured the ability to create our own space, where our communication needs, and their slower pacing, were respected.

Camp was the one other time in our lives when we’d lived in a world that worked for us and our needs. Where we didn’t have to feel inferior for being slow or different. For being a burden. Where we could be ourselves without apology. In the building, just as at camp, we could easily visit each other and spend time together without having to rely on a family member, or a friend, or unreliable public transportation. The inaccessibility of the outside world, which so often left us isolated, felt very far away.

Califano’s power rested in his ability to ignore us. The only way we were going to change anything was if we became impossible to ignore. My feeling is that when you’re addressing power you have to do whatever you can to get their attention, as long as it isn’t violent.

The regulations were not yet signed, and I refused to give up until they were. Almost there is not there.

How many times had I been blocked from going somewhere? Told I couldn’t get in? Told “No, not you”? Buses, planes, schools, restaurants, theaters, offices, friends’ houses flashed through my mind. I was sick of being blocked. I didn’t care if it was a guard, a bus driver, a pilot, a principal, a manager, or a step. It was all the same. They were all the same.

When someone ignores you, it’s an intentional display of power. They’re essentially acting like you don’t exist, and they do it because they can. They believe that nothing will happen to them. Ignoring silences people. It intentionally avoids resolution or compromise. It ignites your worst fears of unworthiness because it makes you feel that you deserve to be ignored. Inevitably, being

ignored puts you in the position of having to choose between making a fuss or accepting the silent treatment. If you stand up to the ignorer and get in their face, you break the norms of polite behavior and end up feeling worse, diminished, demeaned.

“Instead of seeing myself as a weak person, I found my strength reinforced by others like me,”

The truth is, the status quo loves to say no. It is the easiest thing in the world to say no, especially in the world of business and finance.

We had to challenge the nos by working on solutions. When ridiculous statements were made, we had to respond. We needed to help people see that when the barriers were removed, everyone would benefit. This meant that we had to anticipate what the nos were going to be, develop arguments against them, and create answers that people couldn’t say no to.

One of the simplest arguments against change is to say that something is too expensive, unsafe, or impossible. Saying something is expensive, unsafe, or impossible pushes you down a rabbit warren of arguments. It forces you to discuss various interpretations of multiple financial and safety scenarios—and it distracts from the issue that when something is a civil right we must have ingenuity. People need to assume that it is possible to figure things out, that we can problem-solve and act.

We—the disability activists—had to do what we could to be prepared to provide technical assistance, to speak with and, when necessary, argue with the engineers and financial analysts. As a result, activists started to pursue their ...