Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

I NEVER WISHED I didn’t have a disability.

IF I‘D BEEN born just ten years earlier and become disabled in Germany, it is almost certain that the German doctor would also have advised that I be institutionalized. The difference is that instead of growing up being fed by nurses in a small room with white walls and a roommate, I would have been taken to a special clinic, and at that special clinic, I would have been killed.

Hitler’s pilot project for what would ultimately become mass genocide started with disabled children.

They had learned what happens when hatred and inhumanity are accepted. Both my father and my mother were brave people who lived by their values. They had personally experienced what happens when an entire country chooses not to see something simply because it is not what they wish to see. As a result, they never accepted anything at face value.

SOME PEOPLE SAY that what I did changed the world. But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.

I must say right up front, though,

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.

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.

The day-to-day work of fighting fell on my mother, which I take as a sign. Because if the universe really hadn’t wanted me to go to school, it wouldn’t have made Ilse Heumann my mother.

I couldn’t go to this school, I couldn’t go to that school. I couldn’t do this, I couldn’t do that, I couldn’t walk up the stairs, I couldn’t open doors, I couldn’t even cross the street. 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. Sick people stayed home in bed. They didn’t go out to play, or go to school. They weren’t expected to go outside, to be a part of things, to be a part of the world. I wasn’t expected to be a part of the world.

I was a butterfly, becoming a caterpillar.

Being put on a waiting list and evaluated for my ability to attend a public school in the United States should have been illegal, but that was overlooked by the Board of Education.

School is how we pass knowledge, skills, and values on to children—for the good of society. In America, school is considered so important, that, since 1918, it has been compulsory. For everyone except us.

Not only were we not required to participate in the American system of education; we were actually blocked from it and hidden away in the basement.

Although “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.

My mother straddled a fine line between fighting to not have me excluded and worrying that she’d pushed so hard for inclusion that I’d end up excluded.

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.

We accepted that our inclusion was dependent on someone else being “nice.”

Because the reality is, 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.

In retrospect I see that this was inhibiting to my natural extroversion—I probably would have been much more outgoing at that time if I hadn’t been so reliant on favors. As it was, I had to push myself into situations where I would be forced to interact with new people.

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?

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.

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?

Later I would learn that Section 504 was the stealthy work of a few of our champion senators who’d asked some of their senior staff to figure out how to quietly insert civil rights provisions into a bill primarily focused on employment for disabled people—without having to amend the Civil Rights Act.

I played a role in helping to develop the Education for All Handicapped Children’s Act legislation that would eventually become the Individuals with Disabilities Education Act (known as IDEA), ensuring that disabled children are learning in the least restrictive environment possible, shutting down segregated schools, and creating accountability for delivering quality education to disabled students.

The problem was that the stealthy way Section 504 had come about meant that none of the universities, hospitals, or other institutions that would be affected by the regulations had really paid attention to it until the Ford administration had issued the draft regulations for comment. Then, when they’d read them and begun to understand the implications, they were not happy.

In general, institutions don’t like change because change takes time and can entail costs. In particular, the institutions didn’t see the need for spending resources to adapt their buildings, programs, or classrooms for disabled people. It would be too costly, they argued, an unfair financial burden—and how many disabled people really went to university, or participated in x, y, or z specific activity, anyway?

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.

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.

A true democracy values the ability of citizens to hold government accountable.

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.

Frank Bowe stood up. Thirty years old, with intense brown eyes, Frank had an innocent air about him. He looked directly into Senator Cranston’s eyes. Then he started signing, while Lynette Taylor translated. “Senator, we’re not even second-class citizens.” Frank paused. His face showed weariness. “We’re third-class citizens.”

Finally, in a subtle and indirect way, Eizenstat made it clear that he believed it was time for the administration to act.

The West Coast leadership team was almost all women. Would we have been considered too confrontational and unwilling to compromise if we were men? I knew that was one of the underlying issues. Too strong and we were “aggressive”; too passive and we were “ineffective.” I was very annoyed, but I didn’t say it. I didn’t want to create any more divisiveness. We needed to stay together. Fighting among ourselves was a sure way to fail.

Gradually it dawned on me. They were refusing to allow us in. Not everyone. Us. They must have been under specific orders to watch out for people in wheelchairs trying to get into the building.

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.

It was Thursday, April 28, the twenty-fourth day of the sit-in.

Getting a law passed doesn’t necessarily make it happen.

The American Public Transit Association put out a letter saying it was going to cost much too much money to make the bus system accessible. So we geared up for a big fight and discovered that it cost the same amount of money to put air conditioning in a bus as it did to put in a wheelchair lift. The bus association’s financial model had been erroneously based on the idea that most disabled people wouldn’t use the bus, which was a huge presumption. Yes, I was fearful when I first started using the bus, because I didn’t know how a city bus would work with my wheelchair, but once I practiced I got comfortable and started using it all the time.

The truth is, the status quo loves to say no.

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.

People with disabilities also have to work to overcome the feeling that asking for an equal opportunity is asking for too much.

Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether to housing, health, education, or employment, looks different for someone like me and the hundreds of thousands of us who cannot do things the same way, than it does for the majority of people who can. It involves ramps, wider doorways, bars, sign language interpreters, captioning, accessible technology, audio descriptions, documents in Braille, and personal assistance for those with physical disabilities, as well as those with intellectual disabilities. When this is not understood, we get framed as “complaining” and “selfish,” even though we’re simply asking for the same rights as everyone else. This especially happens to women. We’re called “demanding,” and if we refuse to back down, we’re “relentless.” But labeling us “demanding” and “relentless” is just a different way of trying to make us “submit.”

Just as there were people who didn’t want the race divide to end, there were people who didn’t want the disability divide to end. Frankly, many people don’t necessarily see racial or disability segregation as having an adverse effect on their communities or schools. In fact, some people don’t want to live in communities where everyone is included.