This article appears in the August 2026 issue of The American Prospect magazine. If you’d like to receive our next issue in your mailbox, please subscribe here.
The last time I saw Judy Heumann alive was on February 5, 2020, at the Museum of Modern Art’s premiere of the documentary Crip Camp. The movie tells the story of Camp Jened, a summer camp in upstate New York that created a beautiful alternative world for disabled children at a time when disability had virtually no accommodations in wider society. The story of Camp Jened is, however, not simply a heartwarming tale about children. It is the story of how in particular times and places the right community—the right “safe space,” if you will—can birth activism that changes the world.
I’ve known about Camp Jened and the organization Heumann was co-founding president of, Disabled in Action, all my life. This is because the co-founding vice president and childhood best friend of Heumann was my aunt Frieda Tankus. Disabled in Action seemed to be all around me. The apartment building I moved into when I was four years old is in the Penn South limited-equity co-op complex. As my parents settled in, they noticed a wheelchair user named Carr Massi. It quickly came up that she was, at the time, the current president of Disabled in Action. Carr is still my neighbor and still going strong with her manual wheelchair at the extraordinary age of 95.
In 1970, Heumann successfully sued her way into becoming the first wheelchair user to teach in New York City’s public schools. My aunt had previously successfully fought to become the first wheelchair user to live in New York University’s dorms in 1968. In this way, their individual efforts mirrored each other and reflected how much they shared: first and foremost, their drive to fight. Unfortunately, my aunt tragically died at age 22 from complications related to spinal surgery that attempted to correct curvature caused by muscular dystrophy.
With her characteristic forceful personality, Heumann paved the way for herself as a disability rights activist to enter the halls of power.
Disabled in Action went on to do a series of famous actions not long after my aunt died. They famously shut down Manhattan rush-hour traffic in November 1972 in response to President Nixon’s first veto of the Rehabilitation Act, focused on improving funding for disability services and tying them to disability rights. Nixon would veto the bill a second time in March before ultimately signing a weaker version in the fall of 1973. They also organized infamous protests where they used their wheelchairs to stop city buses to demand the installation of wheelchair lifts. Heumann’s experience as a disability rights leader and spokesperson in the early 1970s led her to play a significant role in basically all disability rights legislation in the United States.
Heumann carried forward the labor and efforts of far too many underrecognized people, including those like my aunt who died well before they were able to fully realize their potential. A particularly cruel thing about the fight for disability rights is that disablement leads to early death so often. There is a reason that disability rights are suffused with statements like “the world wasn’t built for us.”
You can’t get credit for the things you didn’t do, even if you were capable of doing them if you had lived. We hold no celebrations for the accomplishments not done in an extraordinary 50-year career that never happened. To be a veteran disability rights activist like Heumann, then, means living with a lot of death. So few of Heumann’s closest colleagues lived to see their sixties, let alone age 75, the age at which she died in March 2023. Her label as the “mother” of the disability rights movement is thus as much about creating some kind of representation for all those unrepresented, tireless ordinary people who fought the good fight as it is about Heumann herself.
IN THIS SENSE, HEUMANN HAS BECOME a symbol in disability rights, analogous to Martin Luther King Jr.’s status in the civil rights movement. Yet, at the same time, this analogy breaks down because Heumann has not gotten the sustained focus and attention that a comparison to King implies. Indeed, Heumann’s “moment” was disrupted by the pandemic in multiple senses. In the most basic sense, it was disrupted because of the lack of in-person gathering that typifies the honoring of people and movements. In the wider sense, it disrupted her moment by creating a societal-wide conflict over infection and disease that illustrated how little disability is taken seriously in the United States.
The attacks on “DEI” from the right have inevitably involved dismantling the already-meager protections disabled people have, and Robert F. Kennedy Jr.’s insertion as secretary of health and human services is a direct rebuke to her legacy. Heumann contracted polio in 1949 when she was one and a half years old. The intentional spread of mass disablement and death by discouraging vaccination and medical research would have absolutely horrified her. Her brother, Rick Heumann, told me in an interview that Judy is “rolling in her grave” at these Trump administration attacks on the disability movement (and beyond).
The attack on protections against racial discrimination is also an enormous symbolic blow to disability rights. In the 1970s, after all, disability activists were inspired by the civil rights movement and modeled their activism around its example. It’s hard to imagine a world where the Voting Rights Act can get repealed but the gains of the disability rights movement remain unscathed. In turn, nothing has become more legendary in the history of the disability rights movement than the Black Panthers’ unflinching and fully devoted support to the 1977 occupation of a U.S. Department of Health, Education, and Welfare building in San Francisco.
The occupation was motivated by the department’s refusal to engage in “regulatory rulemaking” to meaningfully implement the anti-discrimination section of the 1973 Rehabilitation Act Heumann had fought so hard to see passed. That section was known as “Section 504” and has subsequently become the name of the protests and occupation. When Congress passes laws, it typically leaves the details of implementation to agencies and their “expertise.” This process can often favor industries that could be adversely affected by regulation, since they can afford to devote resources for technocratic lobbying and don’t have to worry as much about public scrutiny.
Thirty-five years later, I would engage in similar, though less dramatic, fights as part of the Occupy Wall Street working groups Alternative Banking and Occupy the SEC to push for the implementation of the Dodd-Frank financial regulatory reform, among other things. The 504 occupation successfully compelled President Carter’s health secretary Joseph Califano to sign new regulations, the first real advance for disability rights in the United States. The signature legislative accomplishment of the movement would have to wait for the Americans with Disabilities Act (ADA) in 1990.
These encampments, led by Heumann and lasting for 28 days, remain the longest nonviolent occupation of a federal building in American history.
Heumann’s story is, however, not simply one of activism. It is also the story of the long march through the institutions, for better or worse. She was already a legislative assistant in the U.S. Senate in 1974, where she helped develop what became the Individuals with Disabilities Education Act (IDEA). She was recruited by fellow activist Ed Roberts to Berkeley, California, in 1975 to become deputy director of the Center for Independent Living (CIL), an institution dedicated to facilitating disabled people to live in their own homes if they so chose. After the 504 occupation, CIL built a law center focused on compelling implementation of Section 504. In fact, it was a CETA grant (a 1970s direct job creation program) that funded the creation of that legal center. Taking government money to fight the government was a tactic made famous a decade earlier by Frances Fox Piven and Richard Cloward.
She would later become the assistant secretary of the Office of Special Education and Rehabilitation Services in the Clinton administration, the first adviser on “disability and development” to the World Bank, and special adviser on international disability rights for the State Department under President Barack Obama. Like many 1970s activists, Heumann sought to become an advocate in the institutions to build upon the victories that activism brought. She spent many exhausting years trying to get disability rights legislation passed, culminating in the ADA. The attraction of playing a role in enforcing that legislation, and expanding upon it, is obvious. Her increasing international focus in many ways culminated in the effort for the U.N. Convention on the Rights of Persons with Disabilities to establish disability rights on a global scale.
These kinds of roles are always fraught. While Heumann fought for disability rights at home and abroad, President Obama ordered drone strikes and other military horrors that caused mass disablement and death. As Ta-Nehisi Coates wrote about in a recent Vanity Fair piece about Palestinian genocide and Kamala Harris’s run for president, there is an inherent contradiction between the activism of Black women like Fannie Lou Hamer and the “purveyor of mass violence” role that being president of the United States so often entails. This is no less true for someone like Heumann who, with her characteristic forceful personality, paved the way for herself as a disability rights activist to enter the halls of power. She chose to accept certain things as the way things were to fight hard for change in what she saw as her domain.
I never got a chance to talk to Heumann about these contradictions. Yet I never doubted that what motivated her above all else was the condition of “her” people.
EIGHT YEARS AGO WHEN I was visiting D.C., I asked if it was possible to see her. Being the busy person she was, all she had was an 8 a.m. time slot. This was a struggle for a night owl like me, but I wasn’t about to miss my chance to see THE Judy Heumann. So I got myself out of bed and was so nervous about being late, I was ten minutes early.
We caught up, and I ended up talking to her about a policy I’m still an advocate of: a legally enforceable right to a job. Known as a Job Guarantee, it is (among other things) meant to set a minimum standard in the labor market, including on disability rights protections. Heumann listened to me intently, despite my young brashness and the fact that I was, realistically speaking, a “nobody” at that point. On paper, at least. Knowing about her involvement with CETA, I drew on it as an example when making my broader case for a Job Guarantee.
Whether because of the warmth she still had for my aunt Frieda, or whether she was genuinely intrigued by what I was saying, I’ll never know. But she was Judy Heumann, so she did what Judy Heumann does—she called a higher-up at the National Disability Institute and told that person that NDI was going to meet with me later that week. I could practically hear the resigned tone on the other end of the line saying, “Yes, Judy.” You don’t say no to Judy Heumann.
So a couple of days later, I again got myself up early and had an hour-long meeting with three higher-ups at NDI. They had some skepticism, as they should have because people outside of the disability rights movement regularly proffer schemes to help disabled people without the benefit of their expertise or concerns. Nevertheless, they also took me seriously. After all, Judy had sent me.
Heumann knew what power was and wielded it at all stages of her life. And no matter how high she got, she never deviated from the fight for disabled people. I’m from a generation that has seen the march through the institutions end in scorched earth and tears, so I have an instinctive suspicion of this approach. But I am also fascinated by history—in fact, I am writing a book that is (among other things) a work of history—so I know the attraction of the compromises she made. Few who have made those kinds of compromises have kept the tenacity and fire she showed to her very last moments on this Earth. According to her brother Rick, many of those closest to her believe she “worked herself to death.” Whenever any disabled person reached out to her with their problems, she instantly got on the phone to find the person to resolve it. No matter the different choices our generation makes, there are few predecessors we can learn more from than Heumann.
It was thrilling to see Camp Jened be put center stage at the Museum of Modern Art. It represented something new for the standing of the disability rights movement. At the same time, the laborious and ridiculous way Heumann and the other wheelchair users got onstage also represented the precariousness of this rise in status. There was no built-in ramp for them, or even a temporary ramp. They literally used a hand-cranked lift to bring them onstage, and the pace was excruciatingly slow. My father and I were relieved when someone in the audience spoke up to complain during the Q&A on our guests’ behalf. But it was still disturbing. That precariousness feels to me now like a premonition of the full impact of COVID and the setbacks we’ve had in the five years since.
But this is a profile of Judy Heumann. Which means the setbacks aren’t the point. The point is to relentlessly and ruthlessly demand your rights and the rights of others. It was her relentlessness that made her name a name to be remembered, with all that goes along with it. But through her, countless others are remembered as well. For me, of course, my aunt Frieda Tankus is the “forgotten” name Heumann represents. But there are so many others, and our job is to fight to the very last so we get the chance to finish the audacious project they all launched.
This article appears in Aug 2026 issue.
