Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

But the remarkable thing was this: Not one word was said about what had happened to the Jews. Even when they took us to my father’s old house and showed us pictures of my father and his brothers. Even when they showed us the site where the synagogue had been burned down.

What a pervasive influence silence and avoidance have had on my life.

We weren’t ashamed of who we were and what we needed and we were no longer willing to let charity organizations, focused on finding a “cure,” speak for us. Each working in our own respective countries, together we pushed to change the conversation to one of equality and rights instead of cures.

Right away, 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.

What was different about the US, on the other hand, was the level of advocacy. People in the States, disabled or not, just seemed much more driven to advocate for change. My feeling was that we saw our role with government very differently than people in other countries. We spent enormous time and energy trying to influence policy.

For the first time we started to talk about aging in terms of what people wanted their future to look like if they acquired a disability, because everyone wants autonomy, regardless of age.

SECTION 504 HAD REDEFINED DISABILITY. Instead of looking at disability as a medical issue, it had made disability a question of civil—and human—rights.

People have asked me, “Were you angry?” Was I angry about all the barriers, all the violations, all the mistreatment I’ve lived through? Is that what fueled my activism? I feel sometimes that that question is tinged with an unspoken judgment. 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.

Growing up, I lived two truths: My mother was a fighter. And my mother deferred to my father.

At the same time, as a man, Ed could get things wrong, repeat himself, and make promises he couldn’t keep. And Ed would still be in charge. 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.

As disabled women, we didn’t have help from the women’s movement. We were always pushing to have our issues considered and supported by the women’s movement, but we were largely ignored.

But, is this anger wrong? Is it unladylike and selfish, as we were taught to believe when I was young? I believe not. Our anger was a fury sparked by profound injustices. Wrongs that deserved ire. And with that rage we ripped a hole in the status quo.

It’s hard for us now to imagine Republicans and Democrats coming together to solve a major societal issue, but this is exactly what happened with the ADA.

You must know that despite all our advances, actually asking disabled people what they wanted and talking about disability as a civil rights issue was still a radical concept at that time.

IN APRIL 1988 the first version of the Americans with Disabilities Act was introduced to Congress by Republican senator Lowell Weicker and Democratic congressman Tony Coelho.

Justin took his appointment as an opportunity to unify the disability movement by making diverse appointments to the task force, including people who were HIV-positive. This was controversial. “We should not have representatives of people with AIDS,” he was told. “People with AIDS will die.” To which Justin responded, “Of course they will die. So will you and I. We are not into perpetuating paternalism.”5

The bill was radical and would produce critical change. Its wording mandated that within two years of passage, everything would have to be accessible. Everything.

Finally, on September 7, 1989, the ADA passed the Senate. But then it got stuck in committee hearings in the House of Representatives. For months. Six months.

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.

To reach the Capitol’s main entrance there are eighty-three marble steps to climb. It was in front of those steps, on an unseasonably hot day in early spring, that the protesters who had come to Washington assembled. Pushing themselves out of their wheelchairs, dropping their crutches to the side, leaving any other mobility assistance behind, they began to climb the steps. Some landed softly with help from friends; while others fell out of their chairs directly onto the bottom step.

One was a little girl named Jennifer Keelan. Jennifer, who had cerebral palsy, had come all the way to DC from Arizona after being denied service in a restaurant. “No one wants to watch you all eat,” a waitress had told her. She’d become an activist and was determined to join the protest on the Capitol’s marble steps.7

It could take all night for her and the rest of the protesters to get to the top. Over sixty people climbed the steps.

The next day the Los Angeles Times reported on the event and quoted Representative Patricia Schroeder: What we did for civil rights in the 1960s we forgot to do for people with disabilities.

JULY 26, 1990, was a glorious summer day in Washington, DC. The trees were lush, the sun was out, and the sky was blue. Three thousand people were gathered on the South Lawn of the White House. In front, standing on a platform, was President George H. W. Bush, with Justin Dart at his side.

After nearly twenty years of protesting—from one coast to the other, under five presidents, Republican and Democratic—we had created what I believe to be the strongest, most comprehensive civil rights legislation for disability in the world.

But do you know what is harder and more daunting than the prospect of managing four hundred staff and ten billion dollars under the eyes of a country made up of two hundred sixty three million people and a bicameral Congress? Finding an accessible three-bedroom apartment and personal assistance in Washington, DC.

I wanted to make damn sure that we gave disabled people a real voice in government, and my team needed to reflect that.

We wanted people to understand that we didn’t just want their quality work but also their ideas.

Because really? You’re the director of the National Institute on Disability and Rehabilitation Services and have sixty staff, but you can only talk to them for the two hours you’ve booked a sign language interpreter three days ago? Or, you’re in the elevator and run into an important member of Congress you’ve been trying to connect with for weeks about something, but, darn it, no sign language interpreter?

We had about a billion dollars to allocate, which in US government terms is not that much money—just to put it in perspective, the US was spending somewhere over $500 billion on education annually at that time—but still it is a great deal of money. I took that responsibility very seriously.

Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.

It wasn’t until we got into the thick, hot air outside the airport, among the masses of people, cars hurtling by, dust rising, that we saw the men and women who crawled in the streets. The crawlers, they were called. Disabled people without wheelchairs, forced to crawl through the streets. Many of the crawlers had had polio. The thought struck me: That could have been me.

Who gets to decide who is worthy of life?

Over eighty percent of women with disabilities will be sexually abused in our lifetimes, which is about four times the rate among nondisabled women. What is even worse is that people don’t believe us when it happens—they use our inability to speak or our developmental disabilities as reasons not to believe us.

I knew that a moving object, seeming to move by itself, could certainly be frightening. I’d experienced many adults and children who had never seen a motorized wheelchair, frequently staring. But the fear of this strange object that actually helps disabled persons was also a testament to the lack of support for disability and independence.

The Adviser on Disability and Development’s job was to get disability on the radar for the staff, to integrate a disability lens across the institution. This was complicated and challenging, not only because institutional change is hard, especially in organizations straddling multiple countries and cultures, but also because people all over the world, no matter where they work, have biases.

Victor Pineda.

He is the same very smart and very outgoing person I was first introduced to, but we would never have known what he could do if we had assumed that we knew his needs better than he knew them himself.

Bullies often choose people they perceive as the most isolated and marginalized—and the stereotype of disabled people fits that description, which makes us a target.

I knew Hillary Clinton from when we were both members of the American delegation to the World Conference on Women in Beijing in 1995, when she was First Lady, and I liked her.

Lives Worth Living, a documentary about the US disability rights movement. It told the story of everything we’d done, from just after World War II to passage of the ADA.

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.

You drop a petal in the water and it has a ripple effect.

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.

The US generally does not like to ratify UN treaties. We often think we can go it alone instead. But whether or not we can go it alone is not really the right question. The better question is, who do we want to be? I know we’re a nation that cares about the most vulnerable and marginalized people. What side of history do we want to be on?

President Obama protected the ADA. His administration had a very strong domestic agenda for people with disabilities. In particular, he targeted our next frontiers. Curb cuts and ramps are essential, but if you put in a ramp and nothing else happens, then no one will go up the ramp. Obama hired people with disabilities to work in the White House and appointed people with disabilities throughout the government. He hired people with knowledge and vision, and focused on education and employment for disabled people. Although much progress had been made, significantly lower numbers of us were going to college than were nondisabled peers, we were also much more likely to be unemployed, and we were much more likely to live in poverty than nondisabled people. Obama recommended increased funding for IDEA, the educational act for children with disabilities that I had worked on. He recommitted the US government to hiring one hundred thousand people with disabilities, convened gatherings with the leading designers of autonomous vehicles and disabled people to ensure disability would be taken into account in their development, and did a number of other important things in this vein.

But the biggest thing he did was to get the Affordable Care Act, known as Obamacare, passed. The Affordable Care Act allowed disabled people, who were getting denied health insurance because of preexisting conditions, to get insurance; it also made health insurance more affordable; and expanded Medicaid, a federal program that covered healthcare for children and those who are low income, elderly, or disabled.

Disability is seen as a burden, a tragedy. But what if it wasn’t?

In my own mind, there were no barriers to what I could learn or what I could achieve. All the barriers came from outside of me.