Remembering the Mother of the Disability Rights Movement

I called up Sandy Ho and asked her to tell me everything she could about one of her favorite people, a woman she knew as Bubbie, even though they weren’t related at all. Sandy’s bubbie had a proper name: Judy Heumann. And Judy died at age 75 a few days back. Sandy recalls hearing of Judy’s death: “That was a tough moment. All of a sudden my phone was absolutely blowing up with text messages. It was just such a shock. I could not wrap my mind around it because it was only, like, two or three weeks ago that I was talking with her over the phone.”

Sandy and Judy met because both of them used wheelchairs, and both of them focused the bulk of their time on fighting for disability awareness and inclusion. After decades as an activist, Judy eventually advised two presidential administrations. She was known as the “mother of the disability rights movement.” Sandy was just starting out—organizing mentorship programs for young people like her. She first met Judy in 2015, when they were put on a panel together at a White House function for Champions of Change.

Judy and Sandy seemed to both need each other. After that first meeting, they talked a lot. Sometimes, Judy would ring Sandy up in the middle of the night, when she was fast asleep. “She would still call, and there were many voicemail messages from her that would say, ‘Sandela, it’s you’re Bubbie calling. Call me back, please.’ Of course, I would always call her back.”

The way Sandy remembers Judy now? She calls her a “community ancestor.” On Monday’s episode of What Next, I spoke with Sandy about how Judy Heumann insisted on being seen—and accommodated—changing the world around her forever. And how people she mentored, people like Sandy, want to carry that legacy forward. Our conversation has been condensed and edited for clarity.

Mary Harris: Judy Heumann was diagnosed with polio when she was 18 months old, and she spent three months in an iron lung. When she was well again, she needed a wheelchair to get around her neighborhood in Brooklyn. She described her early life to Trevor Noah back in 2020, when she was promoting her memoir.

Judy says the first time she realized how other people saw her was when she was about 8 years old. Another kid walked up to her and asked, “Are you sick?” Judy felt normal. But it was clear that the rest of the world didn’t see her that way. She realized that all over again when it came time to go to school. The way Judy told it, from the beginning, her life was a fight. Sandy Ho says that for people with disabilities, that is not unusual. Even now.

Sandy Ho: She would describe it as very much isolation. We shared that in common. What stood out to me when she talked about growing up is how alienated people with disabilities felt, because our society’s systems and the policies kept disabled people out of public schools and public life and visibility.

It seems to me for both of you your families were really important.

I viscerally remember my mom storming into my elementary school because in my first kindergarten school photo they had covered the back of my wheelchair with a gray blanket and her being like, “This is never going to happen again.”

They covered it with a blanket so you couldn’t see you were in a wheelchair?

Yes. And this was 1990, in a suburb of Massachusetts that is well-resourced in special education programs and public school access, and still the presumption that my physical visible disability could not be a part of me at 5 years old was decided for me. When I told Judy this story, it was one of the first moments when I realized that this was not a unique experience to just me. That was what the public school system did. It was not just about exclusion but also the fact that they actively hid it from view, because that was seen as not acceptable.

Eventually, Judy Heumann tried to become a New York City school teacher, and at the time, to get into the classroom, there was a written test and an oral test and a medical test. It was the medical test that bounced her from becoming a teacher originally. And the doctor asked her such invasive questions. Eventually, she decided to sue over it. 

Not only was she going to prove you wrong and the entire system wrong, but—and this was always a part of her advocacy and her legacy—she wasn’t just doing it for herself. She understood that in that classroom where she wanted to be a teacher, there could be a student with a disability. There could be other folks in that school that need to know that disabled people could be teachers, and that in fact it was necessary for disabled people to be teachers in the public school system.

And after this lawsuit, basically, Judy Heumann became this person who appeared at almost every disability rights protest and event imaginable. She led sit-ins in San Francisco demanding that government buildings accommodate people with disabilities and shut down traffic outside Nixon’s office. What happened in the early ’70s was really kind of the creation of disability rights. Judy Heumann made that happen. Talk a little bit about those protests, why they happened, what Judy was protesting in the first place.

So President Nixon had signed what’s known as the Rehabilitation Act of 1973.

It seems like a huge deal. 

This was a foundational piece of civil rights law in the disability movement. But what was also a part of this key civil rights law was the lack of enforceability at the time. And so while it was written onto this piece of paper, there was no real entity that was saying, “Hey, the government actually needs to uphold this.” And so Judy basically took over federal buildings in such a way that she was saying, “You actually can’t ignore us, and we will not be ignored.”

These protests revolved around one part of the Rehabilitation Act: Section 504. Section 504 says that any organization getting federal funds cannot exclude people with disabilities. That has all kinds of implications: buildings need to be accessible, have ramps and curb cuts. But years after the Rehabilitation Act passed, many still didn’t.

What became known as the 504 sit-ins are still today the longest federal sit-in and takeover of a federal building. This was happening not just in San Francisco, where Judy was, but all across the country, and I think that is so revolutionary, particularly in the ’70s. Because again, there was no presumption of access. Just hopping onto a plane or a bus or a train and showing up with a throng of your disabled friends who were using wheelchairs, who were blind, who were deaf, and just saying, “We are here together and this network of disabled people is not just a silo anymore.”

And Judy Heumann testified in front of Congress. She took a break from the sit-in and went and said, “We will no longer allow the government to oppress disabled individuals.” Her language is so strong. 

This rule that was originally just about federal buildings eventually turned into the Americans With Disabilities Act, which was much broader. You were in kindergarten when the ADA was passed. You’ve called yourself part of the ADA generation. What does that mean to you?

We came of age with not just civil rights protection, but the presumption and right to claim our own humanity and self-determination. When my teacher asked, “What do you want to be when you grow up?”—being able to ask that and to know that there were people in my classroom who knew that this was a possibility for me.

Section 504 and the ADA were not the ceiling for the disability rights movement but a place to move forward from.

It was 1990 when President George H.W. Bush signed the Americans With Disabilities Act—more than a decade after Judy and other activists had staged their dramatic protests. Sandy Ho says this legislation was only possible because of the way Judy Heumann and others refused to settle for anything less than full access to civilian life. Even now, the language of the ADA seems pretty radical. 

The ADA does not conceptualize disability as just a manifestation of disease, of illness, of a physical ailment. But it also explicitly says that if you’re experiencing a condition, and I’m paraphrasing here, that impacts one or more major life activities, then you have access and the right to reasonable accommodations and protections under federal law.

It doesn’t say you’re broken. It says the world needs to accommodate you.

Yes. It says what disabled people experience, which is the discrimination—the experience of ableism, essentially—is not the fault of the person. It’s in the ways our policies, our public life are structured. And as a result, the reasonable accommodations that we have access to not only need to exist, but consequentially people like public officials who should be upholding the ADA need to be educated about this. This was—and continues to be—the shortfall of the ADA and its use. Not enough people know what exactly this piece of civil rights law actually does, what it provides, how it should be used.

Why do you think that is?

We don’t have disabled people in positions of government, in positions of power, that can make decisions, that can help implement laws of disability civil rights. We have, again, this document that doesn’t necessarily have an enforcement entity either. Somebody in the community who can’t get into a building does not just call up the 1-800-ADA hotline to file a complaint

You still have to sue.

Not only that, folks have to know what and which administration and office to file that complaint to. And then that person within that government entity has to know what are the next steps that are taken, and what are the responsibilities of their particular area and administration. So there are all of these domino pieces that need to happen in order for the ADA to be enforced in the way that it was written and intended to continue to be the gaps, and as a result, again it falls on the disability community to do what folks like Judy and others from the beginning have had to do, which is not just advocate on your own but if you’re lucky advocate with a powerful entourage and crew of your closest disabled friends.

If you could ask Judy for one more thing, one more bit of wisdom, what would you ask her?

Actually, she was the person who was always asking me if I’m happy, what I cared about, and if I am fulfilled in my life and in my job and in my personal relationships. I would take a moment to ask her the same question. I want to know if she felt that same reflection of love back from our community. And where she thought our next advocacy priority should be. And I have a sense of what she would say.

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What do you think she would say?

That she had the privilege of not just becoming an elder in movement but becoming an elder in movement who lived in her own home and not in an institution is remarkable. Because of what she did, who she was, what was expected of her, and in this moment of an ongoing three-year pandemic where we are seeing Congress potentially defunding access to home and community-based care for disabled people. This is where she would prioritize, and there is no more crucial moment right now or issue than to provide access to home and community-based care.

Not enough disabled people have the right to grow old in the ways that she has—on her own terms, in her own home, surrounded by people who loved her dearly. If that is not the goal of self-determination, and what a country and a society that has democratic ideals should be about, then I’m not sure.