Episode 61: Being Heumann with Judy Heumann

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Nahanni Rous: Hi, it’s Nahanni Rous. Welcome back to Can We Talk?, the podcast of the Jewish Women’s Archive, where gender, history, and Jewish culture meet.

Judy Heumann: There needs to be a direct way of looking at how to bring the stories of people with invisible and visible disabilities forward. And because of the stigma that still exists so much around disabilities, many people, even those with visible disabilities don't necessarily really identify or speak up about them. 

Nahanni: Judy Heumann is a legend in the disability rights movement. The fruits of her labor are everywhere—sidewalk curb cuts, accessible public transportation, equal access to public services. Judy is a lifelong activist—from fighting for the right to live in her college dorm, to leading major initiatives at the World Bank and State Department. Judy’s activism often includes telling her own story. Her book is called Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Judy was born in Brooklyn in 1947. She got polio when she was 18 months old, and it left her unable to walk. We spoke over Zoom about her activism and her early years, growing up in a world she had to fight to be included in. She told me about the time when she first realized that people saw her differently.

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Judy: It was an incident that happened when I was about eight years old in my neighborhood. And at that point there were no motorized wheelchairs. So that's why people were having to push me and my next door neighbor, Arlene and I were going to the store, to the candy store and, uh, on our way to the candy store, some boy came over and asked me if I was sick. And that incident, um, really made me feel quite undressed in as much as I really had not seen myself until that moment as being consciously different from other people. And the word that this boy used with me was, are you sick? And so the use of the word sick still today, um, and now we're talking 60 some years later, is still, I think, a prominent word that people think about and use.

Nahanni: Back in the 1950s, Judy’s mother had to fight hard to get Judy into school. The Brooklyn Board of Education wouldn’t let her attend. They claimed she was a fire hazard. Her mother asked the head of a local yeshiva if she could go to school there. He said she could, if she learned Hebrew first, which she did.. and then he rescinded the offer. But her mother didn’t give up, and when Judy was in fourth grade, she got a spot in a school for disabled kids. Judy says that in part because of her disability, her parents strongly emphasized the importance of her education.

Judy: Yeah. I mean, my mother said to me one day, um, You know, you don't know if you're going to get married and you have to be able to support yourself. So you have to study hard. College was something that was always discussed and it was just at that period, you know, where girls young women were not yet going to universities to the degree that they are today. So I always really, you know, later on I appreciated the fact that my parents really pushed education as they did for my brothers, of course, but it, it did mean something additional for me because they've talked about it as you may have to be the breadwinner for yourself and not depend on someone else to help with the breadwinning.

Nahanni: Your parents were both holocaust survivors, I’m wondering how that influenced their parenting and their advocacy on your behalf?

Judy: We never had a lot of discussions about my parents in Germany. They were obviously very much influenced by losing their family. And there was a doctor when I was two years old, who suggested that my parents institutionalize me and I believe that was something that they didn't tell me until I was 36 that that was even something that had been discussed. So it was clearly something that was not on their table. I think very much their belief in the need to have children and have strong families and really supporting our growth and development was related to the Holocaust in as much as they lost so many family. And so yes I think as Jews surviving the Holocaust, I think it very much strengthened them and gave them a fortitude. 

Nahanni: Judy’s parents not only advocated for her classroom education. They also sent her to a summer camp for disabled kids in upstate New York. She and other campers experienced a transformative kind of fun there. For the first time, they were living in a world that was built for them. Judy spent nine summers at the camp, including as a counselor, and built relationships with people she would go on to work with on disability rights.  Judy went to college at Long Island University. That’s where her activism started-- fighting for the right to live in a dorm. She and other students set up a disability services office and founded Disabled Students in Action, which still exists today as the civil rights organization Disabled in Action. Judy served in student government. She graduated in 1969, and started applying for jobs. 

Judy: When I applied for a job as a social worker, I had, um, done an interview on the phone and it was really a good interview and. The woman all, but offered me the job and said I needed to come in and meet with people. So I set up a time to do that and then realized I had forgotten to ask where the wheelchair accessible entrance was or whether there were steps in the building. So when I called back to tell her this, um, she called me back and basically told me I didn't need to come in for the interview. So they wouldn't know laws at that point.

Nahanni: Rejections like this kept happening. Judy applied for a teaching license, and the New York Board of Education denied her application. The denial was because of paralysis of both lower extremities, sequela air poliomyelitis.

Judy: So one can presume because basically I was denied my license because I couldn't walk and I used a wheelchair. So I called the American Civil Liberties Union, told them what had happened, asked to come in for an appointment. And they called me back and said, no, no need to come in for an appointment. It wasn't discrimination. I was denied the job for medical reasons. 

Nahanni: Without the ACLU’s help, Judy decided to sue the board of education for discrimination. And she won the case!

Judy: We were very fortunate. Constance Baker Motley was our judge and she was the first African-American woman to serve on the federal bench. She was a civil rights lawyer before she became a judge. And it was very clear that she did not support what the board of ed was doing and basically encouraged them to do another medical review, which they did, and then I got my license and then I couldn't get a job. Principals didn't want to hire me. Many of the schools were not accessible. I ultimately did get a job, um, teaching in the same segregated classes that I had gone to school in, in Brooklyn. I taught disabled children one year, and then I taught non-disabled children two subsequent years. I taught for three years then went to Berkeley to go to graduate school and never got back to teaching elementary school again.

Nahanni: In Berkeley, California, Judy’s activism took off. In 1977, she and other activists got organized around an important piece of federal legislation: Section 504 of the Rehabilitation Act. 

[Archival Clip: Chanting “Sign 504, sign 504…”]

Nahanni: Section 504 would be the first federal law to protect the rights of people with disabilities, and would guarantee access to all federally funded programs. President Carter had campaigned on a promise to sign Section 504. But now in office, his administration was stalling, claiming it would be too expensive. To draw attention to the cause, Judy and 150 other activists occupied the federal building in San Francisco. 

[Archival clip: Demonstrators chanting and singing: “Sign or resign, sign or resign,” and “We Shall Overcome.”]

[Archival news clip: Man’s voice: It all started this morning here at the old federal building at 50 Fulton when an incident took place outside. Immediately after that demonstration this morning the handicapped started to invade the building. It’s the old federal building which is now the HEW headquarters. They spent most of the day in the office of the regional director here.]

[Archival news clip: Man’s voice: The sit-in in San Francisco’s HEW headquarters now is in its third day and 125 disabled and handicapped are pledging they’ll continue the sit-in through tomorrow night, if not longer.]

[Archival news clip: Woman’s voice: It is nearing two weeks now since 150 handicapped people moved into the HEW offices, and it was today in response to that occupation that a special Congressional hearing convened.]

Nahanni: Here’s Judy, speaking at that hearing.

[Archival clip of Judy speaking at the hearing: Every time you raise issues of separate but equal the outrage of disabled individuals across this country is going to continue, it is going to be ignited, there will be more takeovers of buildings until finally you understand our position. 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. And I would appreciate if you would stop shaking your head in agreement when I don’t think you understand what we are talking about.]

[Applause]

Nahanni: The protesters occupied the building for 26 days. They succeeded in pressuring the Carter administration to sign. Section 504 set a precedent for legislation to come, like the Americans with Disabilities Act, which Judy was also active in fighting for. Here are some excerpts of Judy testifying before Congress in 1988, two years before the ADA was passed.

[Archival clip of Judy testifying before Congress: All too many incidences of discrimination have gone by undefended because of lack of protection under the law. As a teenager I could not travel with my friends on the bus because it was not accessible. At my graduation from HS the principal attempted to prevent me from accepting an award in a ceremony on stage simply because I was in a wheelchair. In 1981 an attempt was made to forcibly remove me and a friend from an auction house because we were “disgusting to look at.” You have all heard our testimony today but you have also been aware of these stories for many years. As elected representatives you must act without delay to end these reprehensible acts of discrimination. To do any less is immoral. Thank you.]

[Applause]

Nahanni: In your book, you talked about a generational divide. Your parents' generation saw disability as a problem to overcome and you and your peers saw the problem with society and the fight was to make society more accessible. And I’m wondering if you could talk about the changes in society that influenced your thinking and your activism?

Judy: So for me and many of my friends and you see this both in the book and in Crip Camp, it was really a recognition of the fact that we had the power to make a difference. And we were learning that by really learning more about the civil rights movement, watching it on TV, reading about it, hearing about it on the radio, seeing what was going on in our communities and recognizing that it wasn't just individual people's stories, but it really was the need to be able to bring many voices together, not just to discuss a problem, but to also put forth a solution. And so that really is significantly what was happening. Many of us were no longer willing to accept discrimination without using the word discrimination. And organizations like Muscular Dystrophy Association, United Cerebral Palsy, March of Dimes, all of these groups… You know, they were looking to raise money to cure. And we did not buy into the issue of cure. We were living today and we believed that society had to change and that it was not our fault, you know, that we wanted to make contributions. And we were feeling empowered by being together and being able to go beyond this is the problem we were moving towards. There are solutions. 

Nahanni: Can you talk about the role of anger in activism? 

Judy: I believe getting angry is a completely appropriate emotion and, uh, we have rights to be angry because of the discrimination that we've experienced. For me, I always feel that taking that anger and turning it into something which is productive, uh, which can help resolve the problem is where I try to go. It is not my role to wait for other people to change their views towards disabled people. The reason why I feel so strongly about laws is that we need laws that clearly define what discrimination is. So that when discrimination occurs, there is something that we can do about it.

Nahanni: In the 1990s, Judy moved from fighting for legislation to helping to draft it. She worked in Washington DC city government, in the Clinton Administration, and at the World Bank. In 2010, President Barack Obama appointed her as the first Special Advisor on International Disability Rights for the US State Department, a position that was eliminated under President Trump. 

Nahanni: Judy has had a long career in activism, and recently, a broad focus on the rights of hundreds of millions of disabled people around the world. I asked her to reflect on the work that still has to be done within the Jewish community. 

Judy: Being Jewish to me is something which is very important. And what's been happening over the last ten years in, in large degree, I think that some of the work that the Ruderman Foundation in Massachusetts had been doing and has been doing, but really bringing forward a discussion on what is actually going on within our community. How are disabled people being included or not, um, has really enabled many of the synagogues around the United States to begin to have some kind of a discussion committees that are being set up. We need to really address the discrimination that exists within our communities. And we need to go beyond, uh, physical accessibility. It's not just not putting a stumbling block in front of someone. Let's open the door and really look at what are the barriers. What are we doing in our day-to-day lives to address these issues? So as Jews, I think, you know, it's really our responsibility to look at and listen, you know, what are Jews with disabilities saying within our communities, what are families saying, who are trying to get their kids in and, you know, preschools and day programs, et cetera. 

Nahanni: In the Jewish community, true diversity requires a shift in thinking, just as it does in the wider world.

Judy: What are the words that people think about when they think about someone having a disability, you know, do they think about sickness and weakness, as opposed to seeing it as a normal part of life. And I think people need to recognize that it is likely that one could acquire a disability and, you know, I think we as a society need to recognize that we are able to make contributions with and without disabilities. It's the barriers that are put before people that really reduce our ability to contribute and feel valued. You know, we're one billion disabled people, at least, worldwide. And, um, as we're able to continue to advance, I think ultimately we make the world a better place for all.

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Nahanni: Judy Heumann’s memoir is called Being Heumann, an Unrepentant Memoir of a Disability Rights Activist. Judy appears in a recent documentary called Crip Camp and her story is being added to JWA’s updated Shalvi/Hyman Encyclopedia of Jewish Women, to be unveiled in late June. Thank you for joining us for Can We Talk?, the podcast of the Jewish Women’s Archive. This episode is sponsored in part by a new podcast called Just Leading. What is fundamental to good leadership, and what needs to change? To answer this question, three leaders in the Jewish non-profit space, Elana Wien, Gali Cooks, and llana Kaufman, team up in Just Leading to uncover the crucibles of leadership, and how to lead with equity and inclusion. From CEOs to Rabbis to Congresswomen, on Just Leading you will hear nuanced and thought-provoking perspectives on how to best delegate, set boundaries, and lead with compassion. Just Leading is the leadership guidebook we’ve been waiting for. Subscribe, and follow Just Leading wherever you get your podcasts. We had help on this episode of Can We Talk? from Ariella Markowitz and Carol Zall. Our team also includes Judith Rosenbaum and Becky Long. Our theme music is by Girls in Trouble. Some of the audio you heard in this episode was provided by the Disability Rights Education & Defense Fund. Visit their website at D-R-E-D-F dot o-r-g. You can find Can We Talk online at jwa.org/canwetalk, and anywhere you get your podcasts. I’m your host, Nahanni Rous. Until next time.

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