The Harvard Law Review remembers and honors the life and legacy of Judith Ellen Heumann, internationally renowned leader in the movement for disability rights. You can read Professor Michael Ashley Stein’s tribute here.
Judy Heumann, a preeminent and internationally acclaimed activist, died on March 4, 2023, at age 75. Widely regarded as the “mother of the disability rights movement,” Judy, a visionary and tireless activist, committed her life to advancing the rights of people with disabilities in the United States and abroad. As a disabled woman and disability scholar, I have been profoundly impacted by Judy, both personally and professionally. More, she was a friend and mentor whom I was privileged to know.
Judy, who became disabled at age two because of polio, was acutely aware of the pervasiveness of ableism in society. In 1952, at age five, her local public school denied her entry, claiming she was a “fire hazard” because she used a wheelchair. Eventually, because of her parents’ advocacy, she was allowed to attend school. Years later, after graduating from college, the New York City Board of Education denied Judy’s application for a teaching license, asserting that her disability hindered her ability to keep students safe, noting concerns about what she would do in the event of a fire. Judy filed a disability-based discrimination lawsuit. A few months later, the City settled, and she was awarded her license and began teaching at a local school.
These early experiences ignited Judy’s decades-long efforts to secure the rights of all disabled people, making an indelible imprint on disability law. In the early 1970s, she co-founded Disabled in Action, a grassroots organization modeled on the work of civil rights activists and the women’s movement. In 1972, she led a protest against President Nixon’s veto of an earlier version of the Rehabilitation Act, halting traffic in New York City. A year later, the Rehabilitation Act of 1973 was passed.
Judy is best known for helping to organize and participate in a 26-day sit-in in 1977 after the federal government failed to issue regulations for Section 504 of the Rehabilitation Act. At a Congressional hearing concerning the regulations, Judy passionately and with conviction avowed, “We will no longer allow the government to oppress disabled individuals. We want the law enforced. . . . We will accept no more discussion of segregation.” Weeks later, the Carter Administration signed the regulations.
But Judy’s work was not done. In fact, it was just beginning. Judy played critical roles in the development and implementation of major federal disability rights laws under the Clinton and Obama Administrations, including the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). Globally, she was also instrumental in drafting and advocating for the U.N. Convention on the Rights of Persons with Disabilities, which the U.S. has yet to ratify. She also co-founded the Berkeley Center for Independent Living and the World Institute on Disability.
Disability rights would not exist as they do today without Judy’s unwavering activism. My life would also be significantly different. Judy’s crusade for disability rights opened countless doors for me—both literally and figuratively. Born only nine years before the ADA was passed, I have enjoyed wide-ranging rights most of my life, including attending school, participating in my community, and attaining employment as a law professor. Because of the ADA, discrimination based on my disability is unlawful, and places must be accessible to me. My successes are a direct result of Judy and her tireless activism.
But beyond securing these incredible rights, Judy should also be celebrated for instilling on disabled people the importance of disability pride. Others often tell people with disabilities that we are not our disabilities. They tell us they do not see our disabilities. They remark on our ability to “overcome” our disabilities. However well-intended these statements may be, they convey the belief that disability is a misfortunate and something to be avoided whenever possible. These messages are harmful. Worse, they place the onus on us, not society, to remedy the injustices we experience.
Judy once told the Washington Post: “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives . . . .” As scholars have posited, and Judy knew, claiming disability and being proud of that identity is necessary to radically transform society and achieve equity for disabled people. Being unapologetically proud of your disability allows someone to celebrate who they are. It also emphasizes the need for society, not disabled people, to become accessible and inclusive. In other words, disability pride reinforces the understanding that it is not someone’s disability that limits them but rather society’s failures. Correctable failures. Similar to Judy, disability is also part of who I am. My disability has influenced every facet of my life—and that is something I am proud of!
Moreover, Judy’s momentous life and immeasurable achievements are important reminders of the disability rights movement’s remarkable and rich history. A history that is so often overlooked. To truly understand and appreciate disability law, it is critical to appreciate the evolution of disability rights. We must recognize how our laws came to be and the struggles endured to get them. We must understand the countless sacrifices made by activists like Judy to secure these rights, and we must pay homage to them. For these and numerous other reasons, I assign Crip Camp, a 2020 movie featuring Judy and other activists, to my Disability Law students during the first week of classes every semester. Providing students with this essential foundation allows them to recognize and appreciate the context in which the laws and regulations they learn emerged. And predictably, every semester, at least one student (usually more) describes Judy as a “badass.” It is safe to say she has countless fans, even amongst the next generation.
Yet, despite the disability rights movement’s countless successes, Judy knew there was much more work to be done. Close to half of the people killed by police are disabled, especially disabled people of color. People with disabilities are enduring disproportionately high rates of COVID-19 exposure, infections, and deaths. Disabled people are twice as likely as nondisabled people to live in poverty. States continue to terminate the parental rights of disabled people at strikingly high rates. These are only a few of the many areas warranting the swift attention of activists, scholars, legal professionals, and policymakers.
Judy believed that justice could be realized for disabled people. She also understood that the fight would be arduous at times but showed that change is achievable. As she writes in her memoir, Being Heumann, “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.” To honor Judy’s legacy, we must keep rolling (or marching) toward progress.
Judy taught us what it means to be a visionary. She showed us what it means to be a friend and mentor. She demonstrated to us what it means to be a changemaker. And above all, she imparted on us what it means to be a good human. Thank you, Judy.