A conversation with disability rights activist Judith Heumann

Illustration of Judith Heumann
Armaan Mumtaz/Staff

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When I entered UC Berkeley as one of its first two nonspeaking people with autism, I knew that Berkeley had been a key city in the Disability Rights Movement, though I was a little fuzzy about the details. My campus disability studies classes opened my eyes to the larger civil rights issues for this often marginalized and overlooked minority. Over the summer, I also had the opportunity to attend the Autism Campus Inclusion leadership program to learn more about autistic identity and disability justice — a program for college students by the Autistic Self Advocacy Network, or ASAN.

It was therefore a privilege to interview UC Berkeley alumna Judith Heumann, a lifelong civil rights visionary for people with disabilities and a leader in the Disability Rights Movement. In Bancroft Library’s Disability Rights and Independent Living Movement Oral History Project archives, more than 460 pages are dedicated to Heumann alone.

Any introduction to Heumann cannot do justice to her accomplishments. She has challenged the system at every turn after childhood polio led to her using a wheelchair. She was involved in the United Nations Convention on the Rights of Persons with Disabilities and in the passing of important disability legislation such as the Individuals with Disabilities Education Act, or IDEA, as well as the Americans with Disabilities Act, or ADA, and Section 504 of the Rehabilitation Act. Heumann has also worked in key roles for the Clinton and Obama administrations, as well as the World Bank. Her social media platforms — “The Heumann Perspective” on Facebook, Twitter and Instagram — explore intersectionality in disability rights.

Closer to home, Heumann helped set up the first Center for Independent Living, or CIL, in Berkeley and served as its deputy director from 1975-82. In 1983, she co-founded the World Institute on Disability, or WID, in Oakland with a focus on policy issues. Most famously, Heumann led 150 people with disabilities in the “504 Sit-in” — the longest sit-in in U.S. history, lasting 28 days at the San Francisco federal building and memorialized in “Drunk History.”

Any introduction to Heumann cannot do justice to her accomplishments. She has challenged the system at every turn after childhood polio led to her using a wheelchair.

According to Heumann, the disability rights movement started in the late 1940s, but became more prominent after World War II. Initially, groups representing different disabilities worked separately. She attributed one of the big changes to the “recognition we needed to be able to come together on important pieces of legislation … (which) resulted in many things, including our ability to get the ADA passed.” A larger single group meant both the support of elected bodies, such as state legislature and Congress, and the ability to have a wider agenda outside of the disability community.

A united front continues to be important to Heumann in order to articulate legislative needs such as in the area of employment. There is currently a huge legislative disincentive for people with more significant disabilities who depend on services — such as Medi-Cal health insurance, Social Security and personal attendant services — from being productively employed. She does not want to hear stories similar to that of her friend who had to turn down a job she was well qualified for because of the fear of losing these crucial services. She would also like to see legislative policy changes so that employers see disability as just another diversity category.

Heumann also confirmed what I’d heard mentioned or implied in my campus disability studies classes that the history of disability activism tended to be chauvinistic. “Many women in the movement are not getting the credit they should,” Heumann said. She attributed this partly to the women’s movement itself not appropriately represented by women with disabilities.

But Heumann  feels the situation has changed with a significant number of disabled women taking on more positions of prominence and drew attention to a small and incomplete list that came to mind: Julia Bascom,  Rebecca Cokley, Maria Town, Katherine Perez, Sandy Ho, Haben Girma, Keri Gray,  Rosangela Berman-Bieler, Ola Abu Alghaib, Yetnebersh Nigussie and Marca Bristo.

As (Heumann) points out, while change itself may take time, we cannot accept “no” in the meantime and need to be pushing as hard as possible when fighting for our rights.

Heumann points to fortitude as a personal strength. As she points out, while change itself may take time, we cannot accept “no” in the meantime and need to be pushing as hard as possible when fighting for our rights.  What she would like to be remembered for is her belief in fighting against discrimination and for “collaboration cooperation.”

Discrimination can come from a lack of awareness and ends up “denying us opportunities … I think when we feel we are being discriminated against, we need to talk about it as such,” Heumann said. People need to feel as though they are a part of their own community and not stigmatized for being disabled in that community. She is happy that a growing number of people are proud of their disability and not hiding it.

Heumann feels that much more attention should also be paid to poor families who are not able to devote the time and attention needed to obtain services for their children. As a result, those children are being adversely affected and not getting the appropriate services under IDEA.

From the viewpoint of an outsider, Heumann pointed out that a critical issue in the autism arena was ensuring that people with communication disabilities (whether autism or another disability) get mechanisms and technology in a timely manner with the presumption of competence.

“Whatever the cause of the different types of communication, we need to be working with children really, really early on and trying different mechanisms that can work,” Heumann stressed. She pointed to the new nonprofit Communication First, for which she is a director and board member, and how it’s working to advance the civil rights for people with communication disabilities.

“The absence of disability in the media continues to result in stigma and discrimination.” — Judith Heumann

In order for “vulnerable populations” to move up to education and employment, Heumann underscored how we need to be working more comprehensively with these populations. This was a concept that was highlighted during my week with the ASAN program — that we can help the whole disabled community by supporting the needs of the most vulnerable group among us.

Heumann believes the message given to families of children with autism at the time of a child’s diagnosis depends on perceptions of what that child is able or not able to do.  She encourages families and people with autism across the spectrum to spend time with adults with autism and organizations such as ASAN, so they have a better understanding of the richness of the community. People with autism also need a variety of mentorship programs (such as ASAN) on a regular basis to get a positive understanding of what is possible.

A recent investigation into the representation of disability in the media conducted by Heumann showed that disability was being left out of the conversation, even as the changing face of media has become all about diversity. She pointed out that we are learning so much more about people of color, sexual orientation and religious issues through the media, but learning very little about disability

“The absence of disability in the media continues to result in stigma and discrimination,” Heumann said.

According to Heumann, people with disabilities are adversely affected if they don’t see themselves represented in the media. Heumann also believes that disabled characters need to be portrayed by actors with disabilities in order for there to be an authentic representation. Her new book “Being Heumann” will come out early next year and discusses many of these issues.

The conversation then turned to her time in the Bay Area. Heumann needed to do a master’s program after suing the New York City Department of Education for a teaching license, and she was accepted into Columbia University. Heumann said she may not have joined UC Berkeley if Ed Roberts had not reached out initially and sparked her interest. Roberts, a UC Berkeley alumni, is best known for starting not just the Independent Living Movement but also the first Disabled Students’ Program, or DSP, among other significant accomplishments. Roberts had been calling to identify emerging leaders and asked if she would be interested in two campus departments — public health, and city and regional planning — that were then recruiting students with disabilities. With the help of former professor Henrik Blum, who later became her faculty adviser, Heumann joined the UC Berkeley School of Public Health.

Heumann feels that life is becoming better for students with disabilities on campuses and said these demonstrate IDEA and ADA at work and that people with disabilities were becoming less insular.

“A very important part of what is slowly happening in the U.S. is students, including students with more significant disabilities, are going to school and, like you, have gotten into Berkeley, a highly prestigious school. … You are obviously feeling more a part of the school because you are going out for things like writing for the newspaper,” Heumann said.

Heumann also recalled her years with the CIL and WID in Berkeley. She stressed that their work had been cross-age, cross-race and cross-disability.

This is in sharp contrast to her years on campus when going to the bathroom entailed a long journey to the other side of the campus. The School of Public Health held its classes at the old Warren Hall (site of the current Li Ka Shing building) and did not have accessible bathrooms. She had to travel to the nearest accessible bathroom at the DSP, which was located off campus on Durant Avenue between Telegraph Avenue and Bowditch Street, to find someone to help her go to the bathroom.

Heumann also recalled her years with the CIL and WID in Berkeley. She stressed that their work had been cross-age, cross-race and cross-disability. She also liked how the CIL has been growing, at one point employing a staff of 200.  “It was really very exciting to be around so many disabled people that were … fighting to strengthen our movement and to remove barriers … (We were) learning how to network effectively, establishing goals and timelines about when we want certain things to happen and living up to them,” all of which proved useful at the time of the “504 Sit-in,” Heumann said.

The Rehabilitation Act of 1973 was passed, with Section 504 of the law finally giving voice to the issue of discrimination by stating that any program that received federal funds could not discriminate against anyone with disabilities for any reason. The one-sentence long Section 504 is widely regarded as the first disability civil rights law in the United States. A law without regulations to enforce its implementation essentially has no teeth, but U.S. Secretary of Health, Education and Welfare Joseph Califano Jr. was not signing off on the 504 regulations. The American Coalition of Citizens with Disabilities, or ACCD, of which Heumann was a member, led the effort to get the regulations out of the U.S. Department of Health, Education and Welfare, or HEW.

When the deadline issued by the ACCD passed, demonstrations and sit-ins started at eight HEW regional headquarters around the country. Led by Heumann and Kitty Cone, more than 150 people with disabilities gathered for the sit-in at the San Francisco Federal Building that lasted 28 days — the longest sit-in at a federal building in U.S. history. This was crucial in swinging the momentum toward the signing of the 504 regulations by Califano, as well as setting the stage for the later ADA.

According to Heumann, one reason the Bay Area “504 Sit-in” was so successful was because the CILs played an important role, and California had way more CILs before any other state. She explained that by 1976, California had eight CILs versus just one in Michigan and one in Massachusetts. As a result, they were able to collaborate both within and outside the disability community and receive support from church groups, labor unions and farm workers.

“We had good relationships with the media, and I think all those things resulted in our ability to be successful,” Heumann reminisced. She urged disabled students and their allies to learn the importance of collaboration in activism from “The Power of 504,” “Drunk History” and her TED Talk.

(Heumann) advised students to know their history, which would help them correctly identify the type of barrier or opportunity they came across and thus know where we want to go.

In response to a “big ask” on advice for the current generation and their allies, Heumann stressed that working intergenerationally and cross-disability “will shape where we want to go … (and) strengthen our engagement, (as) we have different levels of knowledge and expertise.”  She also pointed out that a major weakness of the disability movement is that it was not documented enough. She advised students to know their history, which would help them correctly identify the type of barrier or opportunity they came across and thus know where we want to go. She would like to see disability brought into the academic curricula across the board and not just as a subject of disability studies.

Heumann added that disabled students should not just limit themselves to disability organizations but also consider joining or working with other groups such as other cultural centers so that they can learn from each other and speak on behalf of each other. Friends from diverse communities were important for networking and collaboration. Heumann stressed that students shouldn’t be scared of speaking up and creating change, urging students to get involved with issues her generation didn’t have to contend with such as climate change.

“Use social media more, reach out, speak to more groups and continue to work collaboratively and invite people in to speak so that we can be learning and talking together,” Heumann said.

“Being Heumann: An Unrepentant Memoir of a Disability Rights Activist” can be pre-ordered on Amazon.

Contact Hari Srinivasan at [email protected].

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