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.

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.

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.

“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.

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.

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.

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

It was, I felt, no longer about me. It was about all the people. Yes, I did want to be a teacher, but in my mind, it was about all the stories I’d heard about someone’s brother or sister, or their father, their mother, their cousin, or they themselves—and how they had this problem or that problem and no one was listening and things weren’t happening. A dam had broken. After all this time, all the years of being ignored and dismissed, I felt like we had an opportunity to call attention and start to make it right. We could do something.

The symbolism of the moment hit me. I was actually bringing a legal case against the New York City Board of Education and on the bench was the first black woman ever to be appointed a federal judge.

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.

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.

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.

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.

If you believe in something, do whatever you have to do to get your point across.

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.

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. But for the first time we were discussing civil rights, and no other civil rights issue has ever been questioned because of the cost.

The nature of antidiscrimination laws is that they only get enforced when someone makes a complaint. In other words, if an institution doesn’t voluntarily comply with the law and violates your civil right, the only way to address it is to submit a complaint. And submitting a complaint, fighting a court case, looking someone in the eye and saying, “You’re wrong,” is intimidating. We struggle with the assumption that institutions know more than we do, because that is what we’re taught.

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 “demandin...

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. There’s a “Not in my neighborhood, not in my school, not in my restaurant” kind of sentiment. Until fairly recently, different cities had “ugly laws” on the books that prohibited disabled people from begging; it was called “unsightly begging,” that is, it exposed their “diseased, maimed, mutilated, or . . . deformed” body in public for profit.1

This is one of the things about me. I persist. I insist on speaking. On being heard.

it was the countries with universal healthcare that impressed me the most, the way their concept of healthcare extended far beyond our idea of healthcare. For example, they included personal assistance under the concept of healthcare, with the thought that help getting dressed, going shopping, cooking, and so forth was an essential part of someone’s well-being and should be covered. But it didn’t stop there. In some countries, housing authorities received money to work with people to modify their houses or apartments and make them accessible, whether they rented or owned.

As women, we are taught that anger is somehow wrong.

The truth was, I didn’t push myself forward in the same way Ed did. Ed did it naturally. He presumed things would open up, that he would be welcomed. He presumed privilege. For me, it was something I had to work on. I never felt like I could presume acceptance of my ideas, of myself. I found myself being deferential to men, even when I didn’t mean to be. When I was growing up, men were expected to be the head of the household.

As women, we could say all the right things, do a thousand things correctly, and follow through on all our commitments. We could lead a hundred and fifty people to take over the Federal Building in San Francisco and change the laws for disabled people. But we were not in charge. People called me pushy. People never called Ed pushy.

Because the whole point of a democratic government is to create laws and processes that allow some specific people to govern everyone else according to a previously-agreed-upon set of contracts, so that we can live peaceably together in large groups, meaningfully pursuing our lives—instead of living like Vikings, marauding and pillaging, with the strongest tribe in charge. In order to work, a democracy needs checks and balances, thoughtful deliberations, analysis, negotiation, and compromise. This is what helps to prevent the people in whom we have invested power from pulling fast ones, or simply making hasty bad decisions.

The basic logic goes something like this: People with disabilities won’t benefit as much from x, or y, or z, as people without disabilities, which means, therefore, that x, or y, or z, is not essential. They should accept the idea of going without. The same goes for other issues, like transportation and employment. But what kind of logic is this? The underlying assumption is that people with disabilities have less potential to learn, less ability to contribute, are less capable. That we are less equal. Do we really believe this?

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.

Have you ever noticed how some words are just words—until you really see or hear how something feels? Like hatred. Or discrimination. Or human rights. We underappreciate our human rights in America. But human rights are like salamanders: you don’t notice they’re disappearing until suddenly you realize they’ve gone. In Nazi Germany, as my father would write many years after the fact, no one in his village noticed what was happening until it was too late.

SOMETIMES HOLLYWOOD TRIES to tell our story. You’ve seen the movie. A woman acquires a disability, and wants to die, and then convinces a loved one to kill her. Million Dollar Baby. A man acquires a disability, wants to die, but then falls in love with his personal attendant. To “save” her from a lifetime with a disabled man he kills himself. Me Before You. A man acquires a disability and turns villainous in the face of the agony. Star Wars‘ Darth Vader. Disability is seen as a burden, a tragedy. But what if it wasn’t? What if someone’s story began with the words: “I never wished I didn’t have a disability.”

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?

Donald Trump’s actions are good examples of how attacks on civil rights can happen. These kinds of attacks don’t always come through the front door; often they slide stealthily through any crack they can find. Shutting down the ADA pages on the White House website, ordering staff “to alleviate unnecessary regulatory burdens,” hiring senior staff who neither know the legislation they are mandated to enforce nor believe in what the law requires, or not hiring staff at all are stealthy, slippery snakes looking for the cracks in the civil rights laws. Under the management of DeVos, seventy-two policy guidelines that interpreted and explained the rights of students with disabilities under IDEA disappeared from the government website. It is guidelines like these, documents that clarify and explain laws and policies, that can make the difference in people’s ability to know and advocate for their rights. If someone violates your civil rights, your main recourse involves making a complaint. But if you don’t know or you don’t fully understand the laws and regulations, how do you know to make a complaint? It’s a slippery slope. When laws and policies get less visible, it becomes more and more difficult to know whether an action is even considered a violation of your civil rights.

Not only is it outrageous to blame the needs of disabled children for the problems of the American school system, but also Sessions was clearly implying that the education of children with disabilities was not of equal priority with the education of other children. In other words, he didn’t support the law of the country. And this is the leader whom President Trump had selected to be the country’s highest-ranking legal official, responsible for enforcing the law.

Including everyone’s voice, ensuring the protection of the marginalized, representing the diversity of our country—all this requires a democracy to look deeply into issues, have multiple discussions and committee meetings, and follow the types of checks and balances that take time. Decision-making takes time. Above all, we want a government that is able to examine the facts, be reasonably objective, and make people feel they’re being heard.

We—all of us, and especially marginalized people—need to work together. In the broader civil rights movements disability was and still is absent. Visible and invisible disabilities cut across all minorities. We are African American, Latino, Asian, Native American, gay, straight, transgender, middle class, wealthy, poor, Jewish, Hindu, Christian, Muslim. We can’t be selective about which marginalized group moves forward. At the end of the day, we all need to be moving forward together, taking care of our families and the planet.

For we are our leaders of inclusiveness and community, of love, equity, and justice.