Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

Before Auschwitz and Dachau, there were institutions where disabled children were eliminated. Hitler’s pilot project for what would ultimately become mass genocide started with disabled children. Doctors encouraged the parents to hand their young children over to specially designated pediatric clinics, where they were either intentionally starved or given a lethal injection. When the program expanded to include older children, the doctors experimented with gassing. Five thousand children were murdered in these institutions. The Nazis considered people with disabilities a genetic and financial burden on society. Life unworthy of life.

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.

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

But it taught me, at a very early age, that most things are possible when you assume problems can be solved.

I still remember the day I was five and my mother had taken me to register for kindergarten. My mother helped me put on a nice dress, pushed me to school, and pulled my wheelchair up the steps. But the principal refused to allow me to enter. “Judy is a fire hazard,” he said, explaining to my shocked mother how the school system saw wheelchairs as a dangerous obstruction. Children who used wheelchairs were not permitted to attend school. I would stay home.

I wasn’t expected to be a part of the world.

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.

This is something we would have naturally grown out of, like our nondisabled friends, but we live in an inaccessible world, so we have not. We loved our parents but we relished our freedom from them.

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 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.”

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.

No one expected me to date. I was “crippled” and was often told, whether explicitly and implicitly, that no boy would ever give me a second look. It was as if I was seen as a kind of non-sex.

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.

At a time when many women were encouraged to think about going to college only as a potential route to getting their “Mrs.” degree, that is, finding a spouse, the message I got was the opposite. I would not be able to count on getting married and having a husband who would take care of me. “You need to be able to support yourself, and you aren’t going to be able to support yourself on a high school degree, so you have to go to college,” my mother would tell me.

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.

Why was I constantly being forced to knock on doors where I wasn’t welcome?

A week later, the article, “Woman in Wheel Chair Sues to Become Teacher,” came out. It was 1970, and I was twenty-two years old.

The New York Daily News ran an article with the headline “You Can Be President, Not Teacher, with Polio.”

Maybe I’d get a job, but what I really wanted was to show people that there was absolutely no reason why wheelchair users couldn’t be teachers—couldn’t be whatever we decided we wanted to be.

When people recognize that they can’t make change by themselves, that’s when things really begin to happen.

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 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.

“The Black Panthers are forcing their way into the building!”

The Black Panthers, called by Brad Lomax, had pushed their way into the building with fried chicken and vegetables, walnuts, and almonds. They had brought food for all 125 of us.

The Black Panthers brought us food every night for the rest of the protest.

To be clear, “discomfort and anxiety was the order of our day-to-day existence,” as one demonstrator would later say.

“We will no longer allow the government to oppress disabled individuals. We want the law enforced! We want no more segregation! We will accept no more discussions of segregation and . . .”

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.

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.

We needed to help people see that when the barriers were removed, everyone would benefit.

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.

I refuse to give in to the pressure of the silence. This is one of the things about me. I persist. I insist on speaking. On being heard.

“Two centuries is long enough for people with disabilities to wait before the constitutional promise of justice is kept,” Justin had said at the rally, before the protesters started climbing.

Disability is a natural aspect of the human condition. As people live longer, as we fight more wars, as medical care continues to improve—more and more people who might have died in an earlier era will live. Perhaps with a disability. We should accept it. Plan for it. Build our society around it.

If you were to acquire a disability tomorrow it would be a change. But I can tell you this: it wouldn’t have to be a tragedy. We are all human. Why do we see disability differently from any other aspect of being human?

How we treat disabled people, how we treat minorities, boils down to our fundamental beliefs about humanity. Do we believe that we all have something to contribute, regardless of where we’re from, how we move or think, the language we speak, the color of our skin, the religion we choose, and the people we love? Do we believe in equality?