Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

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.

Now I know that what we were all beginning to learn was what today might be called disability culture. 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. Like Buddhism. Or kid culture. Because we were kids doing what kids naturally do until they are taught otherwise: Slow down enough to listen and truly see each other. Ask questions. Connect. Find a way to have fun. Learn.

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.

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? 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.

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.

Remember what I told you about being given the implicit message that my needs were a burden to others? People with disabilities also have to work to overcome the feeling that asking for an equal opportunity is asking for too much.

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. 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.

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.

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.

Lack of exposure and lack of knowledge. These were the two biggest problems we faced with people. Not that unusual.

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.

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.

Six months after Jorge and I watched Donald Trump’s inauguration, people with disabilities were lying sprawled on the floor outside Senate Majority Leader Mitch McConnell’s office. It was a die-in, organized by ADAPT. In a full-blown attempt to repeal Obama’s Affordable Care Act, the Senate had developed an alternative healthcare plan, and it included deep cuts to Medicaid. Without the medical care and services funded by Medicaid, ten million disabled people faced the real possibility of having to live in institutions. This “die-in” was just one of the protests the disability activists had organized to fight the proposed changes.

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?

When whole groups of people become segregated from others in our society, it weakens the fabric of our democracy. Distance and segregation are breeding grounds for failures of understanding and empathy and ultimately injustice and the denial of others’ rights. If we allow ourselves slowly to become a country where we are simply unable to imagine ourselves in another’s shoes, we can’t understand the complexity of how discrimination occurs and how it feels. Lacking respect for those we don’t know or understand makes it easy to blame inequality and poverty on individuals—rather than on the system. Once we’re caught up in blaming each other, how can we possibly create a society that values equality?