Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

by Judith Heumann

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.

We were learning that despite what society might be telling us, we all had something to contribute: Steve was always a jokester; Neil was great in math; Nancy was a loving friend with a beautiful smile and a strong spirit. We shared similar goals, had similar struggles, and as we continued to grow in the future, we would come to support each other in our dreams of what we wanted our lives to become.

“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. At

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.”

We were beginning to see our lack of access as a problem with society, rather than our individual problem.

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.

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.

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.

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.

Who gets to decide who is worthy of life?

we would never have known what he could do if we had assumed that we knew his needs better than he knew them himself.

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.

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.

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.