Collaboration-Cooperation

My hero, Judy Heumann turns 75 on Dec 18th. Happy Birthday Judy!!

Back in 2019 I had the opportunity to interview the legendary disability civil rights activist, Judy Heumann, for UC Berkeley's "The Daily Californian". 

What an amazing conversation it was too. I prepared for the interview by reading up everything on her online, including the 466 pages of oral interviews archives of the Disability Rights Movement in UC Berkeley's Bancroft Library. 

Of course with any newspaper article, there is a word limit, so any writeup goes through multiple rounds of edits and reorganization of material and focusing on just a few things, so a lot of the conversation ends up getting left out. But Judy had so much advise for us disabled folks. So here is my longer early uncut/unedited draft of our conversation (with a lot of her original quotes) so we can continue to learn from her.

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Collaboration-Cooperation: A conversation with Judy Heumann

When I entered UC Berkeley as one of the first two non speaking autistics, I knew that Berkeley had been a key city in the Disability Rights Movement (DRM), though I was a little fuzzy about the details. Growing up, you are only exposed to a little slice of your world of disability and the issues surrounding your specific disability. I had of course heard of the Individuals with Disabilities Education Act (IDEA), as it had dominated much of my school years. Though at times flawed in its implementation, IDEA was this wonderful law that gave children with disabilities like me the legal right to a free and appropriate education in the public school system in the least restrictive environment. Prior to its 1975 precursor, The Education for All Handicapped Children Act, children like me were denied the right to schooling. But I did not know a lot more, for I do not remember disability history being highlighted in any of my high school history textbooks. 

It was my Disability Studies classes here on campus that opened my eyes to the rich history of the efforts made to ensure civil rights for this often marginalized and overlooked minority. Over the summer, I also had the opportunity to attend the Autistic Self Advocacy Network’s (ASAN) campus inclusion leadership program to learn more about autistic identity and disability justice. It led me to wonder -  if I as a disabled person knew so little, how then could others without a disability know about the issues surrounding disability and become our allies in the struggle for our civil rights.

It was therefore a privilege to interview UC Berkeley alumna Judy Heumann, a lifelong civil rights advocate for people with disabilities and a leader in the DRM. It was a pleasure discussing these issues with her as it not only improved my own knowledge but also make me think and kept me on my toes, as she would at times turn the questions back on me, and ask me for my thoughts.

Any introduction to Huemann cannot do justice to her accomplishments. An incomplete list follows. Heumann became a wheelchair user due to childhood polio, and has challenged the system at every turn from a young age. She had been denied access to her school as she was considered a fire hazard. She sued and won the right to a teaching license from the New York Board of Education. She was involved in the United Nations Convention of the Rights of People with Disabilities and in the passing of important disability legislations in the US like IDEA, Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. She has worked in key roles for the Clinton and Obama administrations, the World Bank and is a senior fellow at the Ford Foundation. 

 Closer to home, she helped set up the first Center for Independent Living (CIL), here in Berkeley and served as its Deputy Director from 1975-82. She co-founded the World Institute of Disability (WID) in 1983 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 US history, lasting 28 days, at the San Francisco federal building housing the Department of Health, Education and Welfare (HEW), memorialized in Drunk History. The list just goes on.

We started the conversation on when disability rights “solidified” into an actual movement. According to Heumann, the movement had started in the late 1940s itself but just became more prominent after World War II. But in terms of impact, given the CDC numbers of 56 million people with disabilities and 1 billion worldwide, Heumann feels the movement has far from solidified, is still emerging and very much in a developmental period.

Heumann confirmed what I’d heard mentioned or implied in my Disability Studies classes on campus that Berkeley’s DRM history tended to be chauvinistic. “Many women in the movement are not getting the credit they should,” both in Berkeley and nationally, said Heumann. She attributed it in part to the way the women’s movement itself had been evolving, with the women’s movement itself not appropriately represented by women with disabilities. But she felt the situation has changed in the last 30-40 years with disabled women taking on more positions of prominence. 

She drew attention to some women with disabilities in leadership positions that came to her mind at both national and international levels. At the national level were the late Martha Bristo , Rebecca Cokley, Maria Town, Katherine Perez, Sandy Ho, Haben Girma, and Julia Bascom. At the International level were Rosangela Berman Bieler, Ola Abu Alghaib, and Yetnebersh Nigussie. She was quick to point out that her list was both small and incomplete as there were so many people at this point.

We then discussed what had changed between the DRM in its earlier days and now. She pointed out though the DRM had been around for fifty to sixty years, initially cross-disability groups worked separately. She attributed one of the big changes to the “recognition we needed to be able to come together [cross-disability] on important pieces of legislation started in the late sixties, seventies and resulted in many things including our ability to get the ADA passed,” It was the realization that they were not going to get the support of elected bodies like state legislature and the congress unless they came together. A larger group also meant more sophistication and the ability to have a wider agenda like the “inclusion of disability related issues outside of the disability community,” said Heumann. 

“Recognition we needed to be able to come together [cross-disability] on important pieces of legislation ... resulted in many things including our ability to get the ADA passed." 

She also drew attention to my being able to work for the Daily Californian as an excellent example of laws like IDEA and ADA at work. She pointed out that before 1975 at least 1 million disabled children were not allowed in schools. “A very important part of what is slowly happening in the US is students, including students with more significant disabilities are going to school and like you have gotten into Berkeley, a highly prestigious school and I presume you are getting accommodations at school and you are obviously feeling more a part of the school because you are going out for things like writing for the newspaper. So I think that’s slowly what’s changing,” said Heumann.

“A very important part of what is slowly happening in the US 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.”

The other positive thing she highlighted is that a growing number of disabled people are feeling proud of who they were and not hiding their disability and attributed this to the growth of the independent living movement. She added that parents of children with disabilities are also organizing more.

The conversation then turned to the current pressing issues in the DRM. Heumann could not overstress discrimination, which can come through lack of awareness, the ramification being “denying us opportunities.” One barrier is that many who are disabled are not identifying as disabled, so part of the challenge was to help people become stronger and see that discrimination was wrong regardless of who it was impacting in the disabled community. 

“I think when we feel we are being discriminated against, we need to talk about it as such,” said Heumann. People also needed to feel like they are a part of their own community and not stigmatized for being disabled in that community.

“I think when we feel we are being discriminated against, we need to talk about it as such,”

Cross-disability was another issue according to Heumann. The DRM needed to help people across various forms of disabilities to feel they are part of a single movement so that we can better articulate legislative measures needs for the entire community as in the case of employment. 

"Employers need to look at disability like they are looking at other diversity communities"

Heumann would like to see more legislative policy changes so that “employers are looking at disability like they are looking at other diversity communities.” She did not want to hear continual stories of people like her friend, turn down good jobs that they are well qualified for, due to a fear of losing state health benefits and personal attendant services. Heumann underlined that the area of employment needed to be looked at very closely. There is currently a huge disincentive for people with more significant disabilities on Medi-Cal and Social Security benefits from being productively employed.

There is currently a huge disincentive for people with more significant disabilities on Medi-Cal and Social Security benefits from being productively employed.

Heumann felt that much more attention should 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 felt a critical issue in the autism arena is to help ensure that people with communication disabilities (whether it is autism or other disability like deafness) 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,” said Heumann. She pointed to the new non-profit Communication First, of which she is a director, working to advance the civil rights for people with communication disabilities.

“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,”

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 stressed during my week with the ASAN program - that we can help the whole community by supporting the needs of the most vulnerable group amongst us.

Heumann also thought the message being given to families of children with autism at the time of a child’s diagnosis depends on “people’s perceptions of what we are or are not able to do.” So she encourages families to interact more with organizations like ASAN and spend more time with adult autistics so that families have a better understanding of the richness of the community. Autistics need to spend time with other autistics and have available a variety of mentorship programs (ASAN program being an example), but on a regular basis, to get a positive understanding of what is possible.

Heumann laughingly credited her Brooklyn origins to her personal qualities quoting the saying, ”New York City - if you can make it here, you can make it anywhere.” On a more serious note she pointed to fortitude as a personal strength as, “at some point I really had to make a decision as to whether or not I was going to allow discrimination to adversely affect me without fighting for change.“ She added that networking is also important to her as she likes to work with other people and stressed that for networking “it’s important to also have friends from diverse communities.”

“At some point I really had to make a decision as to whether or not I was going to allow discrimination to adversely affect me without fighting for change.“

What Heumann would like to be remembered for is her belief that “we need to be fighting for an end to discrimination for all people [and for] collaboration cooperation.” She explained that change itself may take time, but in the meantime we cannot accept no, and need to be pushing as hard as possible when fighting for our rights. She would also like to be remembered for talking to college students like me and others - a reason she does interviews like the current one is because she enjoys the two way interactive flow where, “you’re getting information from me and I’m getting it from you.”

Change itself may take time, but in the meantime we cannot accept no... We need to be fighting for an end to discrimination for all people and for collaboration- cooperation.”

Even as she continues to work in other areas, Huemann recently investigated the representation (or lack thereof) of disability in the media culminating in a detailed report. Essentially, she found that disability is being left out of the conversation even as the changing face of media now is 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 “still only learning a little bit about us, that’s because disabled people are not playing prominent enough roles...The absence of disability in the media continues to result in stigma and discrimination.” In addition there has to be authentic representation, that it, disabled characters have to be played by actors with disabilities and not by non-disabled actors. Equally important is the fact that people with disabilities are adversely affected if they don’t see themselves represented in TV, movies and documentaries. Heumann discusses these issues and more in her new memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.”

The conversation then turned closer to home, to her time in Berkeley and the Bay Area. Heumann had needed to do a masters after suing the New York Board of Education for a teaching license and had been accepted into Columbia. Heumann stated that she may not have joined UC Berkeley if Ed Roberts had not reached out initially and sparked her interest. They had not known each other before then. Roberts had been calling to identify emerging leaders and asked if she would be interested in two campus departments - Public Health and City & Regional Planning - that were then recruiting students with disabilities. With the help of the late Prof. Henrick Blum, who later became her faculty advisor, she joined the School of Public Health in 1975.

In the Bancroft Library’s Disability Rights and Independent Movement Oral History Project archives, containing 466 pages of interviews with Heumann- she had stated that “For some reason, in graduate school I didn't feel the same kind of fear around tests.” As a Berkeley student I just had to ask if that was due to being in 'Berkeley.' Heumann laughingly agreed that part of it had to do with being in Berkeley because “it was really very exciting to be able to be around so many disabled people that were fighting for the same thing, you know fighting to strengthen our movement and to remove barriers and it was also easier to socialize because you know Berkeley is much smaller so one could get around this city much easier.” She added that academically, graduate school was also more essays, class participation, discussions and smaller classes focused more narrowly on a field of study which made it easier.

Heumann felt that as more colleges are in compliance with Section 504 and becoming more accessible, life is becoming better for students with disabilities on campuses. This is in sharp contrast to the time when she had her School of Public Health classes in the old Warren Building way off Shattuck Ave. Since that building had inaccessible bathrooms, she would have to come all the way to the Disabled Students Program (DSP) on Bancroft Ave to get somebody to help her go to the bathroom. Then she would have to travel all the way back to Warren to get to class.

Heumann then spoke of her years in Berkeley with the CIL and the WID. Highlights for her was how they were learning to work together with other political organizations and different groups all fighting for equality. She stressed that they were doing work cross-age (from children through seniors), cross-race and cross-disability with organizations like the Asian Health Clinics to what used to be called the Over-Sixties Clinic (Collaboration-Cooperation). She also liked how the CIL was growing with a staff reaching 200 at one point.

This was also the time when they were “learning how to network effectively, establishing goals and timelines about when we want certain things to happen and living up to them,” said Heumann, which proved useful at the time of the 504 sit-ins. Heumann pointed out that much of what she had been saying during the course of this interview was an important part of what happened with 504.

The Rehabilitation Act had been passed in 1973 itself, 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. Section 504 is widely regarded as the first disability civil rights law in the United States. However. Secretary Joseph Califano was not signing off on the 504 regulations. A law without regulations to enforce its implementation essentially has no teeth. Heumann pointed to the cross-disability organization American Coalition of Citizens with Disabilities (ACCD), of which she was a member, leading the effort to get the regulations out of the Department of Health, Education and Welfare (HEW). The disability community had been growing increasingly unhappy with the stalling. ACCD finally issued a deadline ultimatum and followed through with demonstrations and sit-ins at eight HEW regional headquarters all over the country. The 28 day long San Francisco federal building sit-in at by 150 people with disabilities was crucial in swinging the momentum towards signing of the regulations by Califano.

Heumann felt a 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. By 1976, California had eight CILs versus one in Michigan and one in Massachusetts. As a result, “we were able to organize, we were able to work with labor unions we had good relationships with the media and I think all those things resulted in our ability to be successful with the 504 regulations,“ said Heumann.

She would like to remind disabled students and their allies to go online and look at the Power of 504, a video produced by the Defense Rights Education and Defense Fund (DREDF), Drunk History and her Ted Talk to learn more about 504. For Heumann, the 504 demonstrations underscore the importance of collaboration as they were supported not just by the disability community but by other groups like unions, church groups, farm workers, etc. The 504 regulations helped set the stage for the passage of the Americans with Disabilities Act.

I also asked Heumann what advice she would give for the younger generation?

How do they go about “articulating” needs and see opportunities, as civil rights seems such a huge term and a bit overwhelming? 

How could young people get involved to shape the movement? 

How could they build allies amongst the non-disabled population? 

And did she have any advice for both the disabled community and their non-disabled allies?

Heumann started off by telling students that working inter-generationally and cross-disability, “will strengthen our engagement [as] we have different levels of knowledge and expertise.” Its the power of collaboration-cooperation. She also pointed out that a major weakness of the disability movement is that it is not documented enough. Knowing “where we’ve been and where we are [helps us with] where we want to go.” So she advises students to know your history, for knowledge made you better equipped to play a meaningful role. Then, when you come across an opportunity or barrier that affects the community, you will know if its a tech issue or something else. The “where we want to go” part is also an important part of the intergenerational and cross-disability discussion.

Knowing “where we’ve been and where we are [helps us with] where we want to go.” 

She underlined that we also should understand the needs of others so that we can speak on each others behalf and call on each other for support. So communication was very important for Heumann who advised seeking out others on college campuses and high schools. She would like to see disability brought into the curricula, not just as a subject of disability studies, but integrated into academic work across the board.

“I know a disability cultural center is going to be happening” on campus, stated Heumann [note: UC Berkeley did get a Disability Cultural Center in 2021]. She added that disabled students should not just limit themselves to disability organizations but also consider joining or working with other cultural centers so that you can learn from each other. “Do not be fearful of speaking up and looking at creating change” said Heumann.

For students in other countries, Heumann advised looking up the growing number of disability organizations in those countries and seeing if you want to work with them. She also added that students should get involved in issues that the previous generation did not have to contend with like the impact of the environment and 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” said Heumann.

“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”

 

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