Judy Heumann is known as the mother of the disability rights movement — yet she is lesser known than many of the other civil rights activists of her time. Now, a new film seeks to change that.
Being Heumann, the latest movie from Oscar-winning director Sian Heder, tells the story of the young woman from Brooklyn who led the movement to win the first civil rights protections in the country for people with disabilities.
Before the Americans with Disabilities Act (ADA) was passed in 1990, there was Section 504 of the Rehabilitation Act of 1973. It was a single sentence, written into the law, promising people with disabilities the right to fair employment and access to public life without facing discrimination.
But for years, there were no rules or regulations making the federal government actually enforce those protections.
Until the spring of 1977, when a band of activists with disabilities decided to do something about it. Led by Heumann and Kitty Cone, activists took over the former Department of Health, Education and Welfare building in San Francisco for nearly a month — widely considered the longest sit-in of a federal building in U.S. history.
People across disability groups — from wheelchair users to people with intellectual and health-related disabilities — camped out, demanding, and eventually winning the passage of rules that made Section 504 enforceable. The protests paved the way for federally funded institutions like schools, libraries, city buildings and other entities to be made accessible for disabled people.
"Judy always said, 'disability only becomes a tragedy for me when society fails to provide the things we need to lead our lives' — job opportunities or barrier-free buildings, for example," says former NPR correspondent Joe Shapiro, who covered disability and was a friend of Heumann's until she died in 2023.
Regarding disability rights as basic civil rights was a novel concept at the time, but has remained core to the movement today.
Shapiro says Heumann was fueled by the idea of a generation of young disabled people who would come of age under the ADA: "They see the ADA as a floor, not a ceiling, and Judy loved that there's this new generation demanding more."
With the film having opened in theaters this month and now streaming on Apple TV, NPR sat down with some members of the ADA generation to talk about Heumann's legacy, and the threats they see today to the movement she helped launch.
"It is our job to carry on her legacy and keep that fire burning all these decades later," says Kaleigh Brendle, who started a disability rights organization called Judy's League to push back against the Trump administration's efforts to roll back protections attached to Section 504.
Last month, a federal judge dealt a blow to disability rights activists by agreeing to strip out mentions of "integration" of people with disabilities from Section 504 regulations. This erased some of the very language Heumann and her movement had helped win 50 years ago.
As she watched Being Heumann, Brendle says she "felt simultaneously sad that we're here again because I know she would be hurting to see so much of what she fought for at risk. But it also strengthened my resolve."
Brendle, who is blind and has other disabilities, held a watch party of Being Heumann with four other members of Judy's League. They spoke to NPR about their impressions.
These are excerpts from that conversation, edited for length and clarity.
On what stood out most about Being Heumann:
Liam Holland, 25, Philadelphia: The very first line of the movie is Judy chanting "[Sign 504]!" That gave me chills right away, because almost 50 years later, 504 is the exact reason we founded Judy's League. Seeing her lead the chant hit home because we are still fighting those exact same battles today.
Cricket Bidleman, 27, Baltimore: Like Liam said, seeing history come full circle was not particularly encouraging. But we did it once, so we can do it again. We can save 504.
Kaleigh Brendle, 23, Berkeley, Calif.: What I loved seeing over and over on display was just the unshakable resolve that Judy showed, that fire that would not be extinguished … And I think right now we're seeing relentless challenges to our rights from this administration, from every direction. ... It really gave me hope and renewed what I feel we need to be doing right now.
Ellana Crew, 30, Baltimore: I feel I've never seen so many real disabled people on screen in one place ... They are laughing, they are swearing, they're telling dirty jokes … That was one of my favorite things, honestly, it was just like, 'OK, wow, I didn't expect that to be in this movie.' They are not shying away from disabled people as sexual and romantic beings, which is rarely something that society lets us talk about. And ... it's remarkable how many of the sentiments in the movie, based on this time in the 1970s, still feel so relevant today.
On what parts of the disability rights movement back then still feel relevant:
Ellana Crew: A lot of attitudes expressed by non-disabled people [in the film] felt fairly indistinguishable from the attitudes I hear today. Like some of the same sentiments, some of the same opinions of pity, charity-based mindsets of like, "Oh, well we feel bad for you, but we can't do anything about it, it's just too hard." I think people would be amazed how often that still happens today, or maybe they wouldn't.
Cricket Bidleman: It's amazing to see how in some ways we've made so much progress. I mean, now we have computers and technology that work for us, and autonomous vehicles and things like that. But the discrimination hasn't really changed that much.
Kaleigh Brendle: What really moved me was hearing Judy lead the "Sign 504" chant because I, along with several other people in Judy's league ... we were in Austin, Texas on the Capitol steps this July. And all these years later we were having to chant "Hands off 504."
On how the legacy of Judy Heumann and other activists has shaped the disability rights movement today:
Liam Holland: Every week, I roll a mile and back [in my wheelchair] by myself to get chicken for my dinner puree. That trip has a lot of curb cuts. Before 504, sidewalks did not have ramps, which stopped disabled people's access to sidewalks. The [1977] sit-in forced the government to mandate public access. So every curb I go over is directly tied to that fight. ... The people at the deli see me come in every week by myself. They fist-bump me, get my card from my wallet, put it back ... And then I roll home over curb cuts listening to music. So what Judy means to me, quite simply, is independence and normalcy.
Leigh White, 30, Galloway, N.J.: Unfortunately, history rhymes. And we're not right back where we started, but we are in the crucible, if you will, where we're kind of being fired at on all sides. And it's important to remember her grit and her tenacity and her true dedication ... Disabled individuals are the largest minority group in the United States. And it crosses all genders and all races and everything. So by fighting for the rights of people with disabilities, it kind of raises all boats.Kaleigh Brendle: I always say to other people that don't understand the disability experience: If you broke your arm tomorrow, you would expect that the world would accommodate you. You would expect to have the accommodations that you needed as you navigated that temporary disability. Why is it wrong for us to expect what you would expect in that situation?
Cricket Bidleman: We've made so many advancements because of people like Judy and because of … all these activists and advocates who came before us. And although I do have to struggle with people to obtain access to media or textbooks or the standardized testing to get into various education, it's still nothing compared to some of the things we saw in the movie
Leigh White: Us being part of the 'ADA generation,' we're able to reap the benefits. And with hindsight we're really able to appreciate the work that she's done and then kind of carry the torch into the future. So that the struggles we're going through right now, hopefully the next generation of disabled youth don't have to go through the same things.
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