The Harvard Law Review remembers and honors the life and legacy of Judith Ellen Heumann, internationally renowned leader in the movement for disability rights. Judy passed away in Washington, D.C. on March 4, 2023. Read Professor Robyn Powell’s accompanying tribute here.
Simply put, Judy Heumann was the world’s most significant disability rights champion. A force of nature, Judy was at the epicenter—if not the precipitator—of a cascade of American and international disability rights laws and policies.
Judy was a founding mother of the U.S. disability rights movement, having co-founded the grassroots disability civil rights organization Disabled in Action; the Berkeley-based Center for Independent Living, whose model has spread internationally; and the World Institute on Disability, which provides technical information and support globally on disability-related services. She was a frontline protester: cutting her activist teeth when shutting down traffic in New York City after President Richard Nixon vetoed a predecessor version of the Rehabilitation Act and driving a nearly month-long sit-in to force the Carter Administration to issue regulations for Section 504 of that Act. She was a gifted communicator: powerfully testifying at the hearings, and thereby contributing to the Findings of the Americans with Disabilities Act (ADA), a landmark national-level disabilities rights law; and impactfully participating in the negotiation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), the first international human rights treaty to acknowledge disability rights. She was a deft policymaker: invigorating the Individuals with Disabilities Education Act via regulations while Under-Secretary of Education in the Clinton Administration, reshaping the World Bank’s disability-related policies as its first disability point person, and strengthening U.S. international aid while serving as the Department of State’s first disability advisor in the Obama Administration. The list goes on. Each accomplishment was sufficient to justify a career, but Judy never rested on her laurels.
Ultimately and thoroughly, Judy was a teacher. Completely fearless, she eagerly approached anyone at any time whenever she spied a “teachable moment.” Judy would speed up to them in her power wheelchair and insist, “Excuse me, can we talk for a minute?” What followed was invariably a polite, concise, but direct lesson on how that individual could alter their behavior to be more equitable, if not disability-empowering, in similar circumstances in the future. “Next time, when you . . .” No one was exempt from receiving her sagacious advice. This is my thirtieth year of teaching disability rights, law, and policy across several disciplines (domestic law, human rights, government, bioethics, and others) having originated courses at Harvard, N.Y.U., Stanford, and William & Mary law schools, among others. Judy regularly quizzed me about the substance of what I taught and the methods I employed. She approved of my bringing disability rights advocates from diverse backgrounds to class, and scrupulously checked that I was doing enough to sensitize and encourage the next generation of leaders and allies.
Judy was scheduled to attend my Disability Rights Law class as a guest lecturer on March 6th, but it was not to be. She passed away on March 4th, dramatically too early in her significant life, and also in a temporal irony—she frequently exhorted advocates to “march forth” and keep fighting. We were friends and colleagues for over three decades, and her absence is keenly felt. Judy was born in 1948, I was born in 1963, and we each had to mediate a world without disability-related civil rights, let alone basic access, until well within our adulthoods. Despite the gap in our ages, we experienced countless common expressions of ableism. We were told that we could not attend our respective schools, were incapable of performing college-level work, and that we were fire hazards in public places due to our wheelchairs. Neither of us could access public buildings or public transportation because no “special” provisions had been made. We encountered resistence to flying on our own. And we were told we were inappropriate choices for professional positions despite being more than duly qualified.
These experiences, shared globally by generations of other individuals with a multitude of heterogeneous disabilities, bonded us together in lived experience as well as dedication to making the world better for all persons with disabilities. So although our own lives improved in a post-ADA U.S. where now mostly everyone can board a bus, use a library, or even finally access Congress, we were mindful that similar rights remain aspirations for the vast majority of the globe’s more than one billion persons with disabilities. Accordingly, Judy was incredibly supportive of the work we perform daily, pro bono, at the Harvard Law School Project on Disability (HPOD), especially on behalf of self-advocates with intellectual and developmental disabilities. With her advice and blessing, this work has extended to over 44 countries. Just within Massachusetts, our activities include supporting a self-advocate task force on supported decision-making, promoting inclusive research and scholarship, and pressing to get a special commission on state institutions up and running. Her great compliment, forever cherished, was that we “got it” when it came to representation and inclusion.
Many colleagues in the disability rights movement referred to Judy as their sister. I thought of her more as an aunt—the person who would call after 10:00 PM on a Saturday night and begin by asking, “Did I wake you?,” only to say shortly thereafter, “Can I put you on hold for a minute?,” and be able to do so with an irresistibly guileless charm that engendered neither refusal nor ire. Conversations inevitably began with her asking after the well-being of my family (she loved children), followed by a seamless pivot to talking tachlis (brass tacks), raising an issue that disturbed her, and then bluntly concluding with the question: “So what should we do about it?” We, in this context, meant me and/or my HPOD colleagues.
We shared many things in common, which made for an easy and long-term friendship. Judy was born and raised in Brooklyn not far from where my father was likewise born and raised, and we reminisced about the “old neighborhood.” Her parents were Shoah survivors, as was my mother, among other family members who somehow survived that horror. We were each supported by loving parents who encouraged us to follow our dreams, and we appreciated the role played by households in enabling individuals with disabilities. We both observed Jewish holidays and traditional practices and took pride in this mutual heritage. We both loved musical theater. She unabashadely sang and danced, especially to Motown hits and ABBA; I loved watching her do so. She managed to be thoroughly resolute and dedicated, to both the disability rights movement and to her family and friends—a lesson I try to emulate. Judy’s last words to me on the phone from the hospital were: “I have to take another call. Love you. Bye.”
Throughout our friendship, we often spoke of seeking unity within the disability rights movement, and allyship between the disability rights movement and other social justice movements, as the best way forward. This is especially true in view of the current global rise of illiberalism and its attacks on voting rights; women’s rights; LGBTQI rights; multicultural recognition; acknowledgment of the U.S.’s history of slavery, genocide, and apartheid; and the rise in anti-Semitism and other retrogressive pursuits. Judy would point out that the coalition of people who supported the Section 504 sit-ins by persons with disabilities included the Black Panthers, LGBT organizations, the local Catholic Diocese, and others who recognized that disability rights are civil and human rights. I would note that the International Disability Caucus (IDC) helped foment the CRPD through the aphorism of “nothing about us, without us.” Although imperfect in its representation, the IDC spoke with one voice on behalf of the world’s one-billion-plus persons with disabilities. When Judy and I talked during the years that Professor Bill Alford and I laid the foundation of HPOD—itself inspired by the CRPD negotiations and “nothing about us, without us”—we agreed that HPOD’s cross-disability, transnational model was essential and one that needed broader emulation. Hence, we both were encouraged by the post-CRPD inclusion of disability in the programming and staffing conducted by organizations that previously had not included disability. Notable among these entities are Human Rights Watch, the Ford Foundation, the American Civil Liberties Union, and the Legal Defense Fund. And we were ever mindful of the gaps and challenges that remained.
So what would Judy have us to do to honor her iconic legacy? The short answer is that we must continue to march forth and keep fighting until every law, policy, program, organization, and activity not only acknowledges but meaningfully includes disability at every level and in every area of life. For Judy, meaningful inclusion meant much, much more than inserting “persons with disabilities” in a long list of marginalized groups. And by every level, Judy meant every level, from the highest decision-makers to the individuals with whom persons with disabilities interface every day. And every area of life meant not stopping at ensuring that every school is accessible and every teacher trained, but also that persons with disabilities are centered in existential issues, such as climate action. Like the best kind of mindful aunt, she would expect more of all of us.