Since she was born in 1947, Judy Heumann has defined what it is to be a disability rights advocate. She contracted polio at 18 months, and her mother fought for her to go to school. When she grew up, Heumann fought to be allowed to teach and won a ground-breaking lawsuit to do so. Then she fought for Section 504 regula­tions by taking part in the famous 1977 sit-in. She co-founded the World Institute on Disability, did a stint with the World Bank, served in two presidential administrations and, along with co-author Kristen Joiner, recently wrote a must-read memoir, Being Heumann, that we will publish an excerpt of in the near future. She’s also our inaugural interview for our new “Big Ideas In” column, where we ask leaders to share their Big Ideas for our community.

Expand the Movement, Fight For Everyone’s Equality

Judith HeumannNM: The ADA turns 30 this year. Did you think we’d be further along by now, and where do you think we’ll be when the ADA turns, say, 50?

JH: Quite frankly in the beginning I wasn’t thinking that far into the future. I didn’t think there would be this much advancement in this period of time because it felt like we were so far behind other movements in so many different ways. We were looking at the need to create organizations and develop principles like cross-disability, intergenerational, independent living, community integration … those were issues I thought about most prominently, not where we would be in 10, 20, 30 years.

Looking at that question today, I have a number of thoughts.

First, change takes a long time. On some level that’s kind of a trite thought, but when I think about the amount of work that has been done in my lifetime to advance the movement, we’ve made important progress but are still very far behind other movements. In part this is because other movements by and large don’t see us as a part of their movements.

Judy with Senator Tom Harkin

Judy with Senator Tom Harkin

We’ve seen progress, not excellent, but good to very good, in physical access. But then you see New York City building subway stations that are not accessible and airline travel becoming more difficult, not less difficult.

Disabled students receiving quality education in integrated settings so they can participate in their community and not be marginalized is, in my view, pivotal. And employment is another critical issue. We need to ensure that people get the education they need to work in the work force of today and tomorrow.

It’s not just about today. If we’re not part of discussions about the future, we will lag behind. When you think of autonomous vehicles, if not for the fact we started getting involved early, I doubt there would even be a discussion about our issues, and we’re still not where we need to be.

We must be part of discussions about global warming so we can play a more meaningful role in the policies and practices that are being developed. It’s also important that disabled people be running for office in greater numbers.

NM: That is quite a comprehensive list of issues, and they’re all vital to our continued success. But if you were forced to pick one, where should we put our focus?

JH: Organizing. Expanding the movement. Getting people who don’t identify as disabled to understand that they have a disability and why it’s important for them to identify. Giving people the tools they need to effectively work with elected representatives and influence policy.

It’s important to allow disabled people opportunities to work with other people so they can grow a network that is fighting for equality. And not with just any one group, but to be able to fight for the rights of people across the board.

And we need to ask our own organizations, “Are you truly reflective of the breadth of people with disabilities from all backgrounds? How are you working collaboratively with other groups on the issues that are most important to you? Like a report card, how reflective is your board of directors and your staff of those you work with?”

We must work across disability, and being part of broader movements is so important. What’s important for nondisabled people is important for disabled people. We need to talk more effectively for others to see us supportive of the broader agenda of equality for all, and also demand that others see us as part of their movement.