{"id":49607,"date":"2026-08-08T13:02:28","date_gmt":"2026-08-08T20:02:28","guid":{"rendered":"https:\/\/occupysf.net\/?p=49607"},"modified":"2026-08-08T13:02:29","modified_gmt":"2026-08-08T20:02:29","slug":"judy-heumann-tenacious-symbol","status":"publish","type":"post","link":"https:\/\/occupysf.net\/index.php\/2026\/08\/08\/judy-heumann-tenacious-symbol\/","title":{"rendered":"Judy Heumann: Tenacious Symbol"},"content":{"rendered":"\n
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Credit: Illustration by Lyndon Hayes for The American Prospect<\/figcaption><\/figure>\n\n\n\n

Posted in Health and Social Policy<\/a><\/strong><\/p>\n\n\n\n

The disability rights activist carried forward the demands of those who didn\u2019t get to live to see the movement\u2019s triumphs.<\/p>\n\n\n\n

\"\"by\u00a0Nathan Tankus<\/a><\/strong> August 7, 2026 (Prospect.org)<\/p>\n\n\n\n

This article appears in the August 2026<\/a> issue of<\/em> The American Prospect magazine.<\/em> If you\u2019d like to receive our next issue in your mailbox, please subscribe here<\/a>.<\/em><\/p>\n\n\n\n

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The last time I saw Judy Heumann alive was on February 5, 2020, at the Museum of Modern Art\u2019s premiere<\/a> of the documentary Crip Camp<\/em>. 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\u2014the right \u201csafe space,\u201d if you will\u2014can birth activism that changes the world.<\/p>\n\n\n\n

More from Nathan Tankus<\/a><\/em><\/strong><\/p>\n\n\n\n

I\u2019ve 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<\/a>, 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<\/a>.<\/p>\n\n\n\n

In 1970, Heumann successfully sued her way into becoming the first wheelchair user to teach in New York City\u2019s public schools. My aunt had previously successfully fought to become the first wheelchair user to live in New York University\u2019s 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<\/a> from complications related to spinal surgery that attempted to correct curvature caused by muscular dystrophy.<\/p>\n\n\n\n

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With her characteristic forceful personality, Heumann paved the way for herself as a disability rights activist to enter the halls of power.<\/p>\n<\/blockquote>\n\n\n\n

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\u2019s first veto<\/a> 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\u2019s 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.<\/p>\n\n\n\n

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 \u201cthe world wasn\u2019t built for us.\u201d<\/p>\n\n\n\n

You can\u2019t get credit for the things you didn\u2019t 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\u2019s closest colleagues lived to see their sixties, let alone age 75, the age at which she died in March 2023. Her label as the \u201cmother\u201d 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.<\/p>\n\n\n\n

IN THIS SENSE, HEUMANN HAS BECOME<\/strong> a symbol in disability rights, analogous to Martin Luther King Jr.\u2019s 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\u2019s \u201cmoment\u201d 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.<\/p>\n\n\n\n

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Heumann in 1982. Credit: John Duricka\/AP Photo<\/figcaption><\/figure>\n\n\n\n

The attacks on \u201cDEI\u201d from the right have inevitably involved dismantling the already-meager protections disabled people have, and Robert F. Kennedy Jr.\u2019s 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 \u201crolling in her grave\u201d at these Trump administration attacks on the disability movement (and beyond).<\/p>\n\n\n\n

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\u2019s 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\u2019 unflinching and fully devoted support to the 1977 occupation of a U.S. Department of Health, Education, and Welfare building in San Francisco.<\/p>\n\n\n\n

The occupation was motivated by the department\u2019s refusal to engage in \u201cregulatory rulemaking\u201d 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 \u201cSection 504\u201d 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 \u201cexpertise.\u201d 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\u2019t have to worry as much about public scrutiny.<\/p>\n\n\n\n

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<\/a> financial regulatory reform, among other things. The 504 occupation successfully compelled President Carter\u2019s 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.<\/p>\n\n\n\n

These encampments, led by Heumann and lasting for 28 days, remain the longest nonviolent occupation of a federal building in American history.<\/p>\n\n\n\n

Heumann\u2019s 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<\/a> the creation of that legal center. Taking government money to fight the government was a tactic made famous<\/a> a decade earlier by Frances Fox Piven and Richard Cloward.<\/p>\n\n\n\n

She would later become the assistant secretary of the Office of Special Education and Rehabilitation Services in the Clinton administration, the first adviser on \u201cdisability and development\u201d 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.<\/p>\n\n\n\n

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 <\/a>Vanity Fair<\/em><\/a> piece about Palestinian genocide and Kamala Harris\u2019s run for president, there is an inherent contradiction between the activism of Black women like Fannie Lou Hamer and the \u201cpurveyor of mass violence\u201d 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<\/em> 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.<\/p>\n\n\n\n

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 \u201cher\u201d people.<\/p>\n\n\n\n

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Heumann\u2019s activism made the first real gains for people with disabilities; it was modeled on the example of the civil rights movement. Credit: HolLynn D’Lil\/Courtesy Judith Heumann LLC<\/figcaption><\/figure>\n\n\n\n
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Credit: National Museum of American History\/Judith E. Heumann Papers<\/figcaption><\/figure>\n\n\n\n

EIGHT YEARS AGO WHEN<\/strong> 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\u2019t 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.<\/p>\n\n\n\n

We caught up, and I ended up talking to her about a policy I\u2019m 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 \u201cnobody\u201d 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.<\/p>\n\n\n\n

Whether because of the warmth she still had for my aunt Frieda, or whether she was genuinely intrigued by what I was saying, I\u2019ll never know. But she was Judy Heumann, so she did what Judy Heumann does\u2014she 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, \u201cYes, Judy.\u201d You don\u2019t say no to Judy Heumann.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

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\u2019m 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\u2014in fact, I am writing a book that is (among other things) a work of history\u2014so 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 \u201cworked herself to death.\u201d 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.<\/p>\n\n\n\n

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\u2019 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\u2019ve had in the five years since.<\/p>\n\n\n\n

But this is a profile of Judy Heumann. Which means the setbacks aren\u2019t 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 \u201cforgotten\u201d 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.<\/p>\n\n\n\n

Before you go.<\/h3>\n\n\n\n

I hope that you found this article interesting and thought-provoking. The reason we\u2019re able to publish stories like this \u2014 free of programmatic ads and never behind a paywall \u2014 is because readers like you step up to support our work. <\/p>\n\n\n\n

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Independent, reader-supported journalism is critical at a time when the free press is under assault. <\/p>\n\n\n\n

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Donate Now<\/a><\/p>\n\n\n\n

\"David<\/figure>\n\n\n\n

David Dayen<\/strong>
Executive Editor<\/p>\n\n\n\n

This article appears in Aug 2026 issue<\/a>.<\/p>\n\n\n\n

Related<\/em><\/a><\/h3>\n\n\n\n

Another Bait and Switch on VA Care<\/a><\/h4>\n\n\n\n

June 18, 2026<\/a><\/p>\n\n\n\n

Turning Civil Rights Inside Out<\/a><\/h4>\n\n\n\n

May 1, 2026<\/a><\/p>\n\n\n\n

History Teaches: Reproductive Rights and Equality<\/a><\/h4>\n\n\n\n

May 5, 2026<\/a><\/p>\n\n\n\n

Nathan Tankus<\/a><\/h2>\n\n\n\n

Nathan Tankus is the president of the publication Notes on the Crises. More by Nathan Tankus<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Posted in Health and Social Policy The disability rights activist carried forward the demands of those who didn\u2019t get to live to see the movement\u2019s triumphs. by\u00a0Nathan Tankus August 7, 2026 (Prospect.org) This article appears in the August 2026 issue of The American Prospect magazine. If you\u2019d like to receive our next issue in your… Continue reading → <\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2312],"tags":[2349],"_links":{"self":[{"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/posts\/49607"}],"collection":[{"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/comments?post=49607"}],"version-history":[{"count":1,"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/posts\/49607\/revisions"}],"predecessor-version":[{"id":49608,"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/posts\/49607\/revisions\/49608"}],"wp:attachment":[{"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/media?parent=49607"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/categories?post=49607"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/occupysf.net\/index.php\/wp-json\/wp\/v2\/tags?post=49607"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}