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Remembering the ‘mother of the disability rights movement’: Judy Heumann’s legacy at Princeton and beyond


Naomi Hess with Judy Heumann in Washington, D.C. 

Courtesy of Naomi Hess. 

“There was a deep poise about her,” Rabbi Gil Steinlauf ’91 said of Judy Heumann. “She had a deep sense of mission and purpose, grounded in her own experience for justice.”

Judith “Judy” Heumann, a lifelong disability rights advocate, passed away on March 4, 2023, in Washington, D.C. Her activism, organizing, and policy leadership spanned decades, with career highlights including her contribution to the passage of Section 504, the Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA). As the country and the larger world process Heumann’s passing and celebrate her memory, The Daily Princetonian reached out to Princeton community members with a personal connection to Heumann. 


Heumann, considered by many to be “‘the mother’ of the disability rights movement,” was born in Philadelphia in 1947. She was raised in Brooklyn and contracted polio in 1949 and had used a wheelchair since. Heumann rose to prominence as an activist in the 1970s for her advocacy for Section 504. 

Naomi Hess ’22 recalled meeting Heumann in the summer of 2020 when she participated in an internship program with the American Association of People with Disabilities (AAPD). Heumann spoke with Hess and her co-workers via Zoom — an experience and memory that followed Hess back to campus in the fall. 

Two years prior, Hess had brought the idea of celebrating Jewish Disability Awareness and Inclusion Month to Rabbi Ira Dounn, suggesting that she could plan a specialized Shabbat at the Center for Jewish Life (CJL). For the event’s third year, Hess had the idea to invite Heumann.  

“I was able to use my contacts from [the AAPD] to get in touch with her,” Hess recalled, “and personally asked her if she would be interested in doing [a Jewish Disability Awareness and Inclusion month] Shabbat.” 

Hess served as an associate News editor at the ‘Prince’ and is currently a Young Alumni Trustee.

After months of planning on the part of Hess and her co-organizer Katie Heinzer ’22, in early March 2021, the CJL hosted Heumann virtually in partnership with Hillel@Home, Hillel International’s People with Disabilities Employee Resource Group, the Office of the Dean of Undergraduate Students, Undergraduate Student Government Projects Board, and the AccessAbility Center. Over 150 individuals from the University community and beyond attended the event. Heumann spoke on topics of intersectionality, Jewish community, and media representation of individuals with disabilities.


Heinzer previously served as a podcast editor for the ‘Prince.’ 

According to Hess, who co-moderated the event with Heinzer, the event “focused on disability inclusion within and outside of Jewish spaces.” 

“She did talk about her attitude towards disability … Whenever she came up to barriers, she would just forcibly remove [them], and then use [them] to teach others to show the fact that disability is not a bad word,” Heinzer said about the event.

Dounn, a Senior Jewish Educator at the CJL, commented on the impact of the event. “Judy was her extraordinary, sharp, witty self,” he said.

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“[She was someone] who could compassionately speak truth to power, who could tell someone with love that they were doing something terribly wrong, and that we should change and accommodate people who weren’t being accommodated and include people who were being excluded,” Dounn continued.

Dounn attended Heumann’s memorial service, which took place in March both in-person and over Zoom.

“The thing about Judy is that she made everyone into family,” Dounn elaborated. 

“What was so moving about the funeral was everybody considered themselves a sibling of Judy’s or family. Here’s this person who’s doing this advocacy work trying to get society to change in a meaningful way. But she’s doing it through love, she’s doing [it] through community, and connection and human interaction in the most pure and beautiful way,” Dounn said.

Heinzer also attended Heumann’s memorial service.

“I was having a lot of difficulty in the couple of days before, understanding that she wasn’t here anymore, because she has just such a gregarious personality … every single person in that room had those stories of Judy,” Heinzer said. “Everybody [at the service] carried that intimate piece of her in our lives and out to the rest of the world. She had such an impact on everyone who she spoke with, even once, that her memory is not lost on anyone.”

Rabbi Gil Steinlauf ’91, who currently serves as the CJL Executive Director and Jewish Chaplain at Princeton University, shared his own memories of Heumann. Steinlauf led Adas Israel Congregation in Washington, D.C. from 2008–2018, where Heumann was a member.

“She was a force. She was unstoppable,” Steinlauf said. “She had an exquisite sense of what is right and what is just, and would not depart from her commitment to, what we call in Judaism, tzedek, which means justice.”

Steinlauf added, “I use that term because she was deeply grounded in her Jewish tradition as well and drew a lot of strength and a lot of courage from the Judaism that she cherished in her life.”

Steinlauf also attested to his experience with Heumann’s devotion to cross movement solidarity — a core tenet of disability justice.

“[When I first came out,] she was one of the first people who reached out to me, one of the first people I talked to,” he said. “Every time I shared my experiences or my struggles, she just nodded and you could tell that there was something about her that fundamentally understood the intersection between the disability community and the struggle of LGBTQ people.” 

Some of Heumann’s early activism involved protesting President Nixon’s original veto of the Rehabilitation Act of 1973, which prohibits federal agencies from discrimination on the basis of disability.

The act was eventually passed, but Section 504 of the Act, which specifically protected the rights of disabled people to access federally funded spaces such as libraries and schools through accommodations, did not take effect for several years.

Heumann and a group of over 100 protestors arrived at the San Francisco Health, Education, and Welfare office in April of 1977. After learning that the regional director had no idea what Section 504 was, they staged a sit-in that would become one of the longest occupations of a U.S. federal building. The sit-in was a collaborative effort between the disability activists and their allies, including members of the Black Panther Party who brought the protestors food during the occupation.

Following the 1977 sit-in, Heumann testified before members of Congress. One of the most prominent moments from her testimony involved Heumann directly addressing Eugene Eidenberg, who represented the Health, Education, and Welfare office at the hearing.

“We will no longer allow the government to oppress disabled individuals. We want the law enforced. We want no more segregation. We will accept no more discussion of segregation,” Heumann began. Looking at Eidenberg, she continued, “and I would appreciate it if you would stop shaking your head in agreement when I don’t think you understand what we are talking about.”

Later in her life, Heumann advised the Berkeley Center for Independent Living, worked with the Clinton administration’s Office of Special Education and Rehabilitative Services, and served during the Obama administration as special assistant to Secretary of State Hillary Clinton.

Heumann’s advocacy contributed to the passage of the Americans with Disabilities Act by former U.S. President George H. W. Bush in 1990.

During Hess’ time as a student at Princeton, she had the opportunity to profile Heumann for a journalism class. Hess recalled Heumann’s response to a question she asked relating to retirement.

“I asked her what she did now that she was retired. She corrected me immediately,” Hess recalled. “She jumped right in and said that she retired from the federal government, but she was not retired by any means. She always knew that there was more to be done. But at the same time, she cared so deeply about the people around her.”

Hess also recalled her last meeting with Heumann in January 2023.

“I went over to her apartment for dinner. Something that really stood out to me is that she was just so loving. As we parted ways that night, I didn’t know that it would be the last time, but we hugged each other. And when two people in wheelchairs hug it's difficult, and powerful,” Hess said. “I don't think I took it for granted that I have this really powerful disabled woman to look up to, who cared about me.”

Heumann gained additional prominence in 2020 with the publication of her memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” and with the release of the documentary film “Crip Camp: A Disability Revolution.” The film detailed the path of campers and counselors at Camp Jened, a summer camp for disabled youth, as they explored their identities and formed a community that led many of them to impactful disability activism.

“I’m glad that she was starting to get more recognition in the past couple of years,” Hess said. “She didn’t do all this for the recognition. But after such an amazing life of advocacy … just for her to know personally that people are seeing her, truly seeing her for all her work, I’m sure that really meant a lot,” Hess said.

On the theme of family and recognition, Dounn said, “[Heumann] was not in it for glory, or for ego. She was in it because it was the all in the family. It was relationships. It was ‘How could you let this happen to your sister, your brother, your child, your father, your mother, how could you let this happen to your family? Of course I’m going to fight for my family.’ Simple as that. It’s just so beautiful.”

Hess also noted the impact of her personal relationship with Heumann. “It’s really not often that you get to meet one of your heroes, let alone befriend them. I just feel so, so lucky to have known Judy these past couple years. The world is a better place because of her … seeing the outpouring of love for her after her passing from every corner of the world was really moving for me,” Hess said. “I just feel so fortunate to have gotten to know her and to be able to learn from her. She never hesitated to help others.”

Heinzer, who also participates in disability-related advocacy, echoed a similar sentiment: “It’s because of Judy that I see the value of my work. She wasn't just an untouchable figure … she was a wonderful person every day and talking to her just felt like the most comfortable, easy thing.”

Several community members noted that Heumann specifically sought to inspire the next generation of activists.

Steinlauf said, “She fundamentally understood the importance of inspiring the younger generation … she understood that standing up for disability rights is actually standing up for the rights of all marginalized peoples in this world. She wanted people to understand that there’s a fellowship and a kinship between all peoples who are struggling for a more just society and a more just world.”

“She lived truly to make the world a better and holier place, and the world is a more sacred place because she lived, and it’s an honor for me personally to have known her, but I think it’s a blessing to all of us that she was in this world,” Steinlauf said.

Dounn said, “there’s a whole generation of people now who have a different fight to fight. She’s bent the arc of history towards justice in such a way that we’re now on a different part of that arc.”

“She paved the way for future disabled leaders to really make an impact. Because of some of the laws that Judy helped to get passed, I had access to an amazing public education that really propelled me to Princeton,” Hess said. “Judy spent so much of her life back when she was a teacher herself, and then once she was in leadership in the Department of Education, really making sure that would be possible for people like me.” 

Sophie Glaser is a news staff writer and features assistant editor for the ‘Prince.’

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