Listen to Berkeley Talks episode #154: Judith Heumann on the long fight for inclusion.
[Music: “Silver Lanyard” by Blue Dot Sessions]
Intro: This is Berkeley Talks, a Berkeley News podcast from the Office of Communications and Public Affairs that features lectures and conversations at UC Berkeley. You can subscribe on Spotify, Apple Podcasts or wherever you listen. New episodes come out every other Friday.
Chris Tomlins: Good afternoon, everyone. And I am going to start with the most boring, tiresome, but necessary request. If you would ensure that your phones are switched off or silenced, muted so that the broadcast is not interrupted. Thank you very much.
Good afternoon, and welcome. Welcome to our fall semester Jefferson Lecture. My name is Chris Tomlins. I am a professor of law here at Berkeley. I am the current chair of the Jefferson Memorial Lectures Committee. Now, all Jefferson Memorial Lectures are special occasions, so please come back to more of them. But this lecture is a particularly special occasion for at least three reasons.
First, after a hiatus of two and a half years caused by, you know what, we are resuming our lecture schedule, and that is cause for celebration all by itself.
Secondly, in the spirit of innovation, we are today adopting a distinct format suggested by our Jefferson lecturer herself. Today’s lecture will take place in the form of a discussion or conversation between our lecturer and an interlocutor. So I have two introductions to perform rather than the customary one.
Third, and most important, I think this occasion is special because of our lecturer herself, because it’s an occasion for her to return to the Berkeley, where some time ago she was a graduate student. And so on behalf of the Jefferson Lectures Committee, on behalf of Berkeley’s Graduate Council and the Graduate Division, it’s my very great pleasure to welcome Judy Heumann, today’s lecturer back to Berkeley.
Now, the Jefferson Memorial Lectures were established in 1944 through a bequest from Elizabeth Bonestell and her husband, Cutler Bonestell. The Bonestells were a prominent San Francisco couple who cared deeply for history and who had hoped that the lectures would encourage students, faculty, scholars and members of the extended Berkeley community, town and gown to study the legacy of Thomas Jefferson, and in particular, to explore the values inherent in American democracy. That was their charge. Never one might observe has that hope been more important than in the times in which we find ourselves these days.
The role of past lecturers stretches back nearly 60 years. Senator Alan Simpson, Representative Thomas Foley, Senator Elizabeth Warren, Walter LaFeber, Archibald Cox, Annette Gordon-Reed, these are just some of the figures who have performed this lecture in past years.
As the lecture series has matured over six decades, the range of lecture topics has matured with it. Our lecturers have spoken naturally enough on the subject of Thomas Jefferson himself, on early American history, but they’ve also ranged far and wide on American institutions, policy, politics, economics, education and law.
I’m delighted and the committee is delighted that Judy Heumann has accepted our invitation and allowed us to add her name to this list. Judy, as we all know, I am sure, is a disability rights activist. She’s been fighting for inclusion for over six decades in ways that have been instrumental in transforming legal and societal understandings of equality. Her lifelong experience has included co-founding the organization Disabled in Action, working on Capitol Hill to shape landmark disability rights laws, co-organizing protest and advocacy efforts to spur the implementation of disability rights and advising presidential administrations and the World Bank on disability issues. Her memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, co-authored with Kristin Joyner was published two years ago in 2020.
She’s also featured in what was the Oscar nominated documentary Crip Camp: A Disability Revolution, which I’m sure many of us have seen. It’s directed by James LeBrecht and Nicole Newnham. And it’s available through Netflix and YouTube for those of us who haven’t yet experienced it. It’s an extraordinary film. Judy also produces a podcast, The Human Perspective, which features a variety of members from the disability community. She serves on a number of nonprofit boards, the American Association of People with Disabilities, for example, the Disability Rights Education and Defense Fund, Humanity and Inclusion, Human Rights Watch. She has 20 years of nonprofit experience working with various disability organizations. She’s a founding member of the Berkeley Center for Independent Living. She’s served in the Clinton and the Obama administrations.
Judy is joined today in conversation with Karen Tani. Karen Tani is the Seaman Family University Professor at the University of Pennsylvania, where she’s jointly appointed in the law faculty and the history department. She’s a scholar of U.S. legal history with broad interests in social welfare law, disability law, administrative agencies and the role of rights in the modern American state. She’s the author of States of Dependency: Welfare Rights and American Governance 1935 to ’72, published by Cambridge University Press in 2016. Her prize-winning scholarship has also appeared in such journals as the Yale Law Journal, the Law and History Review, the California Law Review, Disability Studies Quarterly and any number of other leading law journals and reviews.
Professor Tani began her teaching career in our law school here at Berkeley. She developed her interest in the history of disability law and the disability rights movement while a professor at Berkeley. And whilst at Berkeley, she was also a member of the Jefferson Memorial Lectures Committee. And so we have a fourth reason to make this a special occasion by welcoming both Judy Heumann and Karen Tani back to Berkeley.
Karen Tani: Thank you for that really lovely introduction. And it’s just an honor to be here in conversation with Judy Heumann. Chris mentioned how much the benefactors of this lecture cared for history, and I’m a historian, so I want to begin by situating you in historical context and actually asking you some questions about how you think of your own history.
You’re, of course, well-known for your prominent role and prominent battles for disability rights. Something that wasn’t mentioned but is important, I think for many people is your role in surfacing the phenomenon of disability based discrimination in employment. So I’m thinking of your 1970 lawsuit against the New York City Board of Education. You sued them for denying you a teaching license solely on the basis of disability. You and your lawyers were so clearly in the right that the board quickly settled the case and gave you your license. But in the meantime, you drew media attention to this important and underappreciated issue.
Even more prominent, I think is your role in the Section 504 protests, probably, again, very familiar to this audience. But for those who don’t know, section 504 is of course a landmark disability rights law. It’s the predecessor to the better known Americans with Disabilities Act. And this law was enacted in 1973.
But going into the spring of 1977, here’s where we’ll get to the protests, the regulations implementing that landmark law had yet to be issued. They were essentially languishing in the Department of Health, Education and Welfare where they were ready to go and the secretary of that agency would not sign them. So you were part of a coalition that staged sit-ins at various regional outposts of this agency. The sit-in that you took part in is famous for lasting a remarkable 26 days, and you were a part of a small contingent that at some point during that period flew to Washington DC to negotiate with the officials there to kind of ramp up the pressure. And low and behold, that seemed to work. The secretary signed these regulations into law in late April 1977.
So with that on the table, I actually want to ask you if you could talk about some lesser known facets of your life that you think are important to your journey, maybe important to the movement for disability rights and disability justice? So tell us something that we don’t know about you.
Judy Heumann: Well, I’d like to say, first of all, Karen has been great to work with. So we’ve had numerous discussions, so this is not the first time that we’re meeting. So it’s been wonderful to really get to know you and to be able to have discussions really about both of our lives and work that we’ve been doing. So it’s been a real benefit for me too. I want to say one thing, and that is my ability to get my teaching license could have been very different had we not had Constance Baker Motley as our judge. So many of you will know Constance Baker Motley was mentioned during the hearings for Justice Jackson, and she was the first African American woman to serve on a federal bench. And she was the judge that our case was assigned to.
But as I have reflected over the years, it could have easily been another judge who would’ve thought that someone in a wheelchair couldn’t teach. And the reason I say that is when I was considering becoming a teacher, I had contacted the ACLU who initially had said, “Well, go through school. Do what you need to do. And if there’s a problem, call us.” So after I passed my written exam, after I passed my oral exam and I was failed on my medical exam, I did call the ACLU and I said, “Like to come in for a meeting.” And they called me back and said, “No need for a meeting. This was not discrimination.” I was denied my job specifically paralysis of both lower extremities, sequelae poliomyelitis.
And when I spoke to the gentleman on the phone, I said, “Of course this is discrimination.” So it could have easily been one of the ACLU lawyers who was a judge who would’ve said, “No, this is not discrimination.” And the question I think you asked me is very important, things that people don’t know about me. I think we all go through similar changes in our lives when they’re things that we’re trying to advance. So in the case of the lawsuit for teaching, it wasn’t that I was automatically, okay, I knew I was going to get denied, so therefore I’m going to go ahead with it. I was not sure what I was going to do. And it was a combination of not knowing because I didn’t know any lawyers. I had one cousin who was a lawyer, but he did something completely differently. I never knew anybody directly who had sued anybody.
And then, of course, I think the big issue was whether or not I felt I would be a good teacher because it was complete exposure. I had not done student teaching because I couldn’t major in education. The agency that would’ve paid for me to study wouldn’t have paid for me to study in a field where I couldn’t show them somebody else who used a wheelchair who was a teacher. And so that’s why I majored in speech and I minored in education. So I think in a lot of the exposure of things that I’ve done, people think that I’m this really, really, really strong person, which I am. But also when you look at the film Crip Camp and you see when I’m speaking to the gentleman who was sent to the hearings in-
And who was sent to the hearings in the building. He was shaking his head. My voice is cracking and my voice is cracking because frequently I’m very much stuck in being so angry and so upset that I’m trying not to cry. It’s this real combination and it happens a lot. It’s happened a number of times this week just here on campus talking to students who are having problems that I just find unconscionable that these same issues are going on. So I would say that that would be one thing that people wouldn’t necessarily think about for me. But also when we started in New York, here in the Bay Area, it was also I defined it as kind of going into a candy store because there’s so many issues, there was like no wrong issue. But then what we had to learn to do was to be selective in what we were going to choose to fight for.
And we were very early on learning that we had to move from very broad issues like 504, which ultimately when implemented and the ADA focuses in on very specific issues. Buses have to made accessible. Well, how do you make a bus accessible? And when people are arguing it’s going to cost too much money, what data do you have to show that they’re wrong? Do you allow people to get into cost benefit analysis when this is a civil rights issue? And the answer is no.
But even if you don’t, you nonetheless still have to be able to argue dollars and cents. So really being able to help people recognize that universities were really important, which is why it was great for me to come here because there were a lot of disabled students who were studying in so many areas. And that’s ultimately I think where we are continuing to move forward having the knowledgeable people who can really sit at the tables of power, both as external people and internal people to really be able to take issues and be able to give them the right focus and be able to fight against people who, in many cases, are saying no without any substance.
It’s kind of a reflex. No, no, you can’t have an accessible bus. Today, in younger generation, they don’t have any idea what it’s like that there are no accessible buses. When you think about BART, there’s elevators. Most people have no idea that those elevators came about because of a lawsuit, the same as Metro, on and on. So today, men and women with baby carriages expect those elevators to be working and can get equally pissed off as we are if the elevator doesn’t work. But they have no idea what it took to get those elevators in there.
So all these, I think very critical issues, and we’ll get into this, but Karen was also talking about the issue of universal design. And so in reality, I think the disability community has been one of the leading communities, even if we haven’t used that word all the time of the importance of universal design. Because one of the premises is anyone in the community can acquire a temporary or permanent disability at any time. And if we are thinking about not just the built environment, but we can think about that for a minute. If the built environment is really done from a universal perspective, it means that people don’t have to think about not moving into a certain place, being able to live in a certain place and stay in place, having people come over and visit, on and on. But if we don’t think about it as universal design and we think about it as something for you and something for you and you, three of you out of this room, then of course the costs go up. The benefit is not the benefit that I think we think it should be.
Karen Tani: One of the things I think is so interesting about that answer is I think you’re talking about strategy and intentionality, but also happenstance and luck. So I think something that’s interesting to me as a historian about your lawsuit, for example, in addition to the judge, the lawyer that eventually helps you, Roy Lucas, he pops up later in U.S. legal history of course for his role in Roe vs. Wade, right? And we’ll talk maybe later about the disability and reproductive rights intersection, but I think again, sort of a mix of intentionality and happenstance is really interesting. I want to ask a question that now invites you to actually kind of look backwards at your life, rather than remembering how you lived it at the time. And this actually connects to your book, which I have here. And I wanted to ask you a question about the choices that you made in narrating your life story and why it was important to you to write this book in the first place.
And just as an entry point, I’ll flag one thing that I’ve noticed as an outsider to disability rights and the disability community is even as an outsider, I think I can see that sometimes disabled lives get narrated in a particular way. So there are tropes that the media likes, and there are tropes of a person who tries hard, overcomes the obstacles, maybe even overcomes the impairment themselves to live the able bodied norm. So I think the story we’ve all seen some version of would be the person with a mobility impairment that on their wedding day will rise above it and walk down the aisle. And I’m sure that people have been tempted to frame your life in those terms well, but overcoming obstacles, working hard, persevering, you win the lawsuit. And so I wanted to ask you, as you had a chance to narrate your own life, what are some of the choices that you made? And again, why did you think it was important to write this book?
Judy Heumann: I didn’t. For many years people had talked to me about writing a book and I was like… So that’s the truth. I guess that’s another thing I discussed, but I knew that I couldn’t write it by myself. And I really didn’t know if people would be interested in the story. And for many years people would say, “Oh, you’ve got to write a book. Oh, you’ve got to write a book, you’ve got to tell these stories, you’ve got to write a book.” And I thought about it, but then I was too busy.
But then I was working in the Obama administration and I knew what my job was going to be in the Clinton administration. And then of course she lost. So around that exact time, I was contacted by a company that someone had told somebody to call me because they had an interesting story and they asked me if I would be interested in writing a book. And I said, “Well, I can’t do it by myself.” I’ll think about it.
And so the agent got me a number of names of people, and I interviewed Kristen Joiner and decided that we could make a go of it. But I wanted this story to be very personal and very clear. So that’s why a lot of the book is really focusing on significant details because I wanted both disabled people and non-disabled people to be able to get a better understanding of the types of things that I, but not just me, many of us had to do. And I wanted anyone who’s reading the book to be able to identify with experiences that I was going through and to also see that many of those experiences are the same kinds of experiences other people go through. But then it was obviously important that it had to be enabling people to see the impact of discrimination and why I was motivated to get more engaged.
Partly because my parents obviously. Partly because of being without disabled people. Partly because of the civil rights movement, which I think has played an extraordinary role in my life and so many other people’s lives because some of you are old enough to remember that television was new at some point. Some of you may not have televisions anymore, but television was very important at that time because we were reading about what was going on in the south. But it was very different to be able to watch what was happening, to be able to hear what people were saying, and to see it and hear it at the same time. So that’s what I wanted the book to do, to really be able to go through a certain part of my life and to also understand how for me networking is so important. That it’s never one person.
And basically, I mean really one of the reasons I loved Berkeley outside of CIL, is I had an amazing professor, Dr. Henrik Blum at the School of Public Health. And he was the first person to legitimize my expanse of what needed to happen. He didn’t say to me, “You’ve got to pick one thing and only work on one thing.” He saw the one thing as public policy reform. He understood the importance of organizing. So that was really great to be able to learn from so many people. But fundamentally it was we need to change the systems. And there are many different ways of doing that.
I wanted people to read the book and leave the book and say, I related to myself in this because I think in any area of discrimination, and I certainly have heard it in the last couple of days, if people feel that they are being told not to tell their story, don’t tell people you have a disability, particularly for people with invisible disabilities and you’re hiding a dirty secret, then it’s very difficult to engage in fighting in the bigger movement because not that everybody who’s fighting for change is going to benefit the same way, but in reality, I think all of us working for equality, all of us benefit.
And so, that’s really I hope what the book in part is showing that the circle keeps getting bigger and bigger. And that’s what it means to be. It needs to be collaborative. And we need to throw our stories in there because our stories… I think our stories are not only valuable for us as individuals to tell our stories, but telling the same stories not even planned, but throw a group of 10 people together in the area of disability, and I’m sure can be any other area and put certain questions forward. The same types of things will be said over and over again. And maybe that helps legitimize for others the discrimination, the barriers that exist and maybe allows people to open the door a little bit and say, we need to look at change.
Karen Tani: I will say the book is very clear and very accessible. I also like that it’s complex and that you describe characters in complex ways. And that your life, it has an arc, but it’s not a pure triumph story. So something that really stuck out to me was at one point in the book, you talk about a complicated relationship with another prominent figure in the disability rights movement or later when you’re at the World Bank, you talk about an incident of what I would describe as… I think you describe as workplace bullying and how even late in your career you would encounter that. So I found that, again, complex and relatable.
Judy Heumann: And something that other people can relate to.
Karen Tani: Exactly.
Judy Heumann: It wasn’t just a disability issue.
Karen Tani: Exactly. A theme in the book and something that you touched on, and of course the title of this lecture, it comes from the book and it’s this quote where you say, “The status quo loves to say no.” And so, I wanted to ask you a question that is about various institutions that you’ve either been outside of or you’ve been inside of that are being asked to change. People are saying the status quo at this institution needs to change for various reasons.
Often in your writing, it’s about inclusion and equity. And these institutions could be schools, businesses, government agencies. They could be advocacy organizations. So the question is, in your experience, what are some of the most common ways that institutions say no to people seeking inclusion and access? Are there particular examples that come to mind for you? And of course the question after this will be ideas that you have about how do you get beyond the no instinct?
Judy Heumann: I mean, I think… It depends on the institution. So at a university for example, students are only there for a short period of time and faculty hopefully are there for a longer period of time. But even for faculty who are being judged and are looking for tenure, the ability to necessarily speak up and out can be hampered by the fear of recrimination. And for students, I think in… Well, when I look at a university, I think it’s about leadership. And what frequently happens is that universities are not really looking at the issue of inclusivity in the area of disability as many of us would like it to be. So we wind up dealing with issues around physical accessibility, accommodations, and not focusing as much as we should on the issue of academia and disability. And not just disability studies courses, but the inclusion of disability in all academic areas where appropriate.
And I think the leadership changes at universities, deans change, faculty do change. And if there isn’t someone or some leadership team that really has a clear, not only understanding of what the issues are, but a commitment to the change, that things may change for a while. They make it a little better for a while, but then they falter. And when they falter, who is there to really pick it up and move it forward? It winds up again with the students who are really not in a position of power or authority, nor should they have to be dealing with these issues because they’re there as students. They’re paying to come to the school, whatever it may be.
And so, I think that’s really one of the issues that is very problematic. We can see in areas like buses where finally the standard was developed requirement that all new buses are accessible and basically all new buses are accessible. And after 2010, almost 100% of buses across the United States are accessible. Pretty much true for the trains. But even in New York, where they weren’t doing what they were supposed to be doing, they’ve been sued and they’re having to spend a huge amount of money to repair things that should have been done right away. But in the area of primary secondary education, higher education, employment, it’s not something which is just material, physical. You have to have teachers who are knowledgeable about inclusive education.
One of the critical things that you also have to have is an awareness that no child or adult can be denied the right to an education based on your belief that they can’t succeed. And if you believe that they can’t succeed and there’s no one there telling you, “No, you cannot exclude that child from learning,” things don’t change. And I think we see over and over again in disparities in education, not just in the area of disability, but where communities change and the teachers change or the teachers don’t change, but the population changes and people don’t understand cultural diversity and frictions and tensions that evolve.
Those are issues that I think leadership needs to be on top of. I mean, some of the things I was hearing today, quite frankly, from students who were saying that they were being told not to disclose their disabilities and that they were in certain positions here on campus as RAs or whatever they’re called, not in the dorms, but TAs. That if other TAs didn’t know that they had a disability, then they were numbers of cases saying things to them not knowing that they had a disability about how people don’t really have a disability, how they’re asking for things that they don’t really need, on and on.
So, this culture of lack of accountability or I think it’s even worse than that. I think it’s really people have to know this is going on. Students are afraid of discussing it. And I think that’s a pattern that leadership needs to be addressing. And I think one of the things I was doing here is going to the disability cultural center, and I was there yesterday and today and it was really exciting to hear the students coming together and some of them, not for the first time clearly, but some of them for the first time, and really listening to other students. And coming in and talking about a student not being able to get a book that they needed in the beginning of the semester until almost the end of the semester. Things like that should not be going on.
Karen Tani: So, it sounds like part of what you’re describing is a stickiness of certain beliefs that is preventing the status quo from changing. Something that we talked about earlier that you mentioned earlier was also these cost arguments. I know that’s something that you’ve grappled with throughout the different struggles you’ve been involved with. And as a historian, I see that a lot when I look at the materials. So what has been your response to arguments that say, oh, we would like to do this or that. We’d like to have this center that you’re asking for, but it is just too expensive. Resources are scarce and we can’t do it.
Judy Heumann: I mean, legally looking at some of these issues, things that are legally required. Now cultural centers are not legally required, but many universities around the country are committing for whatever the reason to set up these cultural centers. But so frequently the disability community is being told we don’t have the money for disability cultural center. So my answer to that is in the beginning when you’re looking at cultural centers as an example, you look at all of the cultural centers you need to have and you don’t say, “Oh, disability cultural center, we don’t have enough money.” So we’ll go through developing every other cultural center who may also be complaining if they don’t get enough money. But the disability cultural center is coming in really late. And so if you’re integrating, whether it’s gender, LGBTQI, race, disability, you need to be putting forth and budgeting in a way that allows all the groups to equally be served.
Everybody can be fighting for a second staff person, a third staff person, whatever it may be. But people have to believe across the board that each group is considered equally valuable. And that from an academic perspective, these are things that we want to do to have an enriched university. Now, this is only one issue, but it goes on and on and on. When you look at affinity groups and you look at companies that have more and more affinity groups, so very frequently the disability affinity group is like one of the last, if not the last. And the other issue is that when looking at affinity groups in many companies, they’re looking at the issue of accessibility.
Now, certainly at the universities, the issue of accessibility is also one of the big issues because it hasn’t necessarily been done the way it’s supposed to be. But my point when I’m speaking with people is we need to be moving beyond accessibility because if we’re only thinking about accessibility, then we don’t get into many of the critical issues that need to be addressed.
So the need to have sign language interpreters and captioning is something that needs to be built in. And if it’s being built in, that’s the way it needs to be. If it’s not built in, then it’s also considered more of a burden.
If you budget appropriately, like organizations like the World Institute on Disability, the Center for Independent Living, they have a priority to hire disabled people. And in their budgeting, just like phone costs, accessibility is built in. If it’s not built in and then it’s like, “Oh, I never thought of it.” But that’s not the case of what should be happening in so many places. It needs to consciously be a part. And then we need to be looking at as we’re developing whatever it may be, putting a disability lens on how disability and all these other issues, how do we ensure that in our development that it’s going to meet the needs of these constituencies? How do we decide what we’re going to construct? Who is going to be giving input? Basic things that companies think about on a regular basis, but in the area of disability too frequently are still not looking at disability as an equal issue.
Karen Tani: So, this actually leads nicely to the next question, which was going to be about tools for achieving change while understanding how institutions tend to function. And so, I think your budgeting example is a really nice one of a tool that can be deployed in the right context. I wonder if you have other tools that you’ve used in your career that you think work well for particular situations, or do you have advice about how and when to, for example… Litigation is a particular tool that we’ve talked about, or social media campaigns are another tool. Boycotts, street protests, right? There are all these things that could be in the arsenal of changemakers.
So, I wondered if you had any thoughts about how and when you have thought about using these different tools and which ones have tended to work well, and maybe less well, in particular context.
Judy Heumann: I’ll start with a simple example, which I can discuss, but… So, I’m on the board of Human Rights Watch, and I got on the board in 2021, ’20. And they had a big meeting in France a couple of weeks ago, and I wasn’t on the board when they selected it. And it turned out that where it was was not going to be very accessible, and I ultimately didn’t go to the meeting.
But they were great because they were learning with me as we were going along. And they basically passed a motion as the board that they will not convening meetings that are not held in accessible places. Now, that’s important to me. A, I’ve been on boards that focus on disability forever, but I’m also on the Save the Children Board. And so, those two boards, the first time that… I don’t know if it’s the first time they’ve ever had anyone with a disability, but it’s the first time that they ever consciously brought someone on with a disability whose partial purpose was to address issues around how the organization’s working in this area.
So, I would say it’s from what one might think is a simple area, but clearly isn’t. Its board is diversifying themselves. And that, again, is not just a disability issue, but it’s across the board, moving all white boards to be more reflective of the communities. And again, disabled people are frequently disabled people who understand the issues, as opposed to having a disability because of whatever.
So, I think looking from the inside out, who is making the policy? Same in government. It’s really ensuring that people in leadership positions represent the constituencies that are supposed to be covered. And if disabled people from diverse backgrounds are not included in this, that’s an issue.
Now, when looking at different tactics… So, if you’ve seen Crip Camp, you see that there were many layers in the work that was being done. And you don’t really, really get that much information, but you can tell because there are rallies outside, people who were speaking. So, we had labor unions involved, the religious community, the anti-war community, the Black Panthers, Safeway. Safeway didn’t get mentioned in the film, but Safeway also was helping. Black Panthers were there every day.
But it was very interesting to see the breadth of the support. And I think one of the reasons we had that support was a conscious effort all the time to reach out to many different groups. And it was, in part, this theme of we want other people to see that disability is a natural, normal part of life, and therefore people need to be engaged in helping to support people who are working for change. And if they also engage with it, that’s great. And that’s what we saw with 504. That’s what we saw with the Americans with Disabilities Act. That’s what people have seen in California and other states when the governor’s office maybe trying to cut a program or support a program and you need to work collaboratively together.
So, groups like the Gray Panthers and CIL and some of the legal rights organizations who were doing work together in the late ’60s and early ’70s, pretty much this theme of, how broad can we make our circle? But I think that’s essential in strategies of how do we develop a campaign.
When I was talking to the students today, some of them were raising certain issues. And to one of the people, I said… She was upset about a particular thing, and in the context of what she was trying to do, I said, “Well, for me, whatever this one issue was, I really wouldn’t focus on it. It may make you really upset, but at this point, there are many bigger things you want to be able to do.”
So, looking at how to prioritize. Even though it’s something you really may be angry about, maybe it needs to be put off to the side. But I think the ability for people to come together, to be strategizing, to develop plans of action, goals and timelines, measuring, keep going is very important I think for all of us who are involved in any kind of rights-based work.
What we’ve definitely learned over time is getting the best law possible doesn’t guarantee implementation. And there are many reasons for that. So, it’s this consistent need to be able to keep people engaged. And I think equally importantly, allow people to understand the processes that we have to go through.
The elections coming up in a couple of weeks, I think are frightening for many of us. And for me, one of the big issues is many people don’t understand… For me, I don’t think anybody is perfect. Our legislators are not perfect. And in a different world, there may be certain people I wouldn’t support, but when I measure A against B, I’m taking A, not B. And allowing people to, or helping people learn about how are judges appointed? What is a state judge? What is a federal judge? What are things that are important to you? And do you know anything about these people are going to be appointed and who’s going to be doing the appointing? I think children need to be learning this. Adults need to be learning this so there’s more of an accountability system. And in part, what we’re learning is life isn’t perfect, but we want to do the best we can.
Karen Tani: Yeah, it’s so interesting because one of the things that I find striking about the Section 504 protests is that you and your colleagues really understood the mechanics of government, actually. You understood the administrative state and the administrative process. So, when you say people need to better understand how things work to be able to play this longer game, it’s really interesting.
I wanted to ask you a question that relates to what you were saying about networks and the breadth of the networks. In our previous conversations, you had mentioned to me that when you think about the disability rights movement, you think about it as a work in progress. And part of what is in progress about it is relates to this idea that it’s kind of… Disability is this umbrella concept, and disability, in some ways, is that that umbrella concept is the glue that can bring a lot of people in and that can give the movement power, but it also can make for a very complex organizing experience because of the diversity within disability and the way in which…
For many people, disability is just one component of an identity and there’s a risk that if you overemphasize the disability part of the experience, are you missing out on the way that people experience race and class and gender, sexual identity, just other lived experiences that intersect for them with disability.
So, I wondered if you could speak to… This is I think for other people in the room who are organizers and who think about disability, maybe people who are part of other movements and are thinking about how could they make disability more salient within the context of what they’re doing, what insights do you have, or what advice do you have to offer?
Judy Heumann: I think your point is very important. And over the last number of decades, as states like California have become much more diverse, the issue of what do we need to do to consciously make sure that voices are being included? And there are many different ways. And I think one of them really is to help support the development of organizations that are being run and are focusing on BIPOC disabled individuals, as an example, and the ability to work together.
It’s also really to support the increasing numbers of people who have invisible disabilities. And disability is interesting because the numbers keep growing, and many of the disabilities are invisible. And living in societies, it’s not just the U.S., where stigma of disability is so extreme and where communities that people come from, stigma may be more extreme depending on the culture of the family.
And so, being able to keep all these balls up in the air and making sure you can’t avoid race, religion, gender and disability in many cases because they do play such an important role, which is why I talk about the need for disability from an academic perspective, to be integrated, so people can actually understand if they’re studying social work, what are some of the unique issues? They’re maybe not even unique. It’s the wrong word, but what are some of the issues that they should be learning about, so that if they are working with x family, that they have an understanding of what some of the cultural issues may be.
And it’s not going to be in every family, but it’s having a broad enough understanding and not assuming that everything. There’s such richness of what we need to be looking at in the area of disability, which is why I said earlier, the issue of accessibility should be something that’s in place, we know how to deal with it, so that we really can be focusing on, who are the people that we are producing in whatever field?
There have been a series of articles in the last month on doctors not wanting to serve disabled people. That’s a big deal. I mean, that’s focus groups done with reliable information. When I worked in the Clinton administration, we did six focus groups. I was interested in getting a better understanding of what employers thought about hiring disabled people.
So, we hired a company. We did two focus groups in Baltimore, two focus groups in St. Louis, and two focus groups in San Francisco. And I attended most of them, but not visibly. In other words, I was behind a one-way mirror. And we had a leader for the focus groups. And people were invited to come to have a discussion on employment policy and companies. And it was large companies, moderately sized companies and smaller companies.
And the first 20 minutes of the discussion was about what the policies were, around hiring people from diverse backgrounds, and then the discussion focused in on disability. And of course, with the focus group, you’re basically saying you’re not sharing the information. And it was amazing, to hear things that people were saying because they trusted that the discussions were confidential.
In Baltimore, there must have been some campaign going on that was focusing on helping deaf people get jobs. And we didn’t know this before the focus groups, but in these two discussions, there were no deaf people, but a couple of these people said, “Oh, we’ve been getting these resumes from deaf people.” And one person said, “And of course we’re going to interview them, but we will never hire.”
We had someone in a company here that said they used this… The policy was used in restricting Black people from moving up within the company. And if you had a disability, it was the same policy. I remember this was like 1996, 1997, but they were saying things that they would never say in a public way, or we will only allow people with certain disabilities to work in certain areas. We won’t let them be in the front, or someone who said… She was the executive to the head of, executive assistant to the head of this company and she had another woman who worked for her. And one day the woman had her Dilantin on her desk, and Dilantin is for epilepsy. And when the woman saw the Dilantin, she called the consulting company or the contractor who they had gotten this woman from who had worked there for quite a while, had no problems. And she told them that they needed to move the woman somewhere else, because if her boss ever knew that they had someone on staff who had epilepsy, she’d get fired.
We had two people that almost got into a fisticuff, literally. One was a headhunter for a small company and one was a headhunter with a big company. And the smaller company said, “If we sent disabled people out for interviews, they would never call us again.” And the other company said, “You have to. It’s a violation of the law.” This other woman jumped up and said, “Don’t tell me what I have to do. I know it will happen to my company.” It was amazing. However, while things may have changed a little bit today, there are still those exact issues going on. What you’re not seeing, what is happening, where the internal structure of these organizations will allow it to happen, because that’s what’s happening.
Karen Tani: I have so many more questions, but I think we’re probably at the point where we should open it up to the audience. So, I’ll save my questions for now, and I think that Jane Fink is going to pass around a mic to those who may want to ask Judy Heumann a question.
Jane Fink: Raise your hand if you have a question, and I’ll come to you. I’m going to move around the room.
Audience 1: Thank you so much. I first want to thank you both so much for the work that you’re doing.
Judy Heumann: Can you hear her in the back?
Audience 1: Very good. Thank you. My question is about travel, about the need to get places if you want to advocate, and how… Just two main questions. Airplane travel, you go to Britain, and every taxi just has a ramp they just roll out. Why? Why are these not here in the states? Why systemically is this so difficult to make happen? Thank you.
Judy Heumann: So, why in London? Actually, I’m not sure if that’s still true in London. I think it is still true, the black cabs are accessible, but I think Ubers have been a problem. And I’m not sure where they are right now, whether or not they have the same access, because some places, they’ve been not allowed in or certain things have been required.
But I think in London, obviously, there was a law that was passed, and they all used the same kind of vehicles. And so, the drivers there also get three years of training and all types of things that don’t happen here. But I think the biggest point that you’re making is around travel itself and how travel is, in some ways, becoming more difficult, particularly with airline travel, for people who use wheelchairs and certain types of wheelchairs, because there isn’t… There’s a lot of work going on with a number of disability rights organizations, in part working to get legislation passed, which would allow individuals to file lawsuits against airlines. Right now, that can’t be done, whether or not…
We’ll see what goes on with the Congress, but they’ve got 54 sponsors for this bill, all Democrats. They weren’t able to get a single Republican on. But the issue with airline travel is smaller planes can’t safely put certain wheelchairs on the planes. The airlines are reducing changing their fleets so that in some airports, they’re not flying in the bigger planes. So, a chair like mine will not fit on certain planes. And my chair, it’s not a particularly big chair. And you are seeing people who are not traveling because of these issues. And there’s no regulations. Like Boeing in particular has planes where the cargo pits, you can’t get the wheelchair and the door doesn’t open up the right way. Airbuses are better. I’m not a designer, but those are things that I’ve had to learn. But I think the bigger point is, why is it that we are 32 years after the ADA, 1973 with 504, that were still dealing with basic issues?
So, I would say bus travel, good, but takes a long time, and you can’t take a bus across the Atlantic Ocean or Pacific. And it speaks to the fact that our movement is still not strong enough, and other non-disabled people are not looking at what… Karen, can you hand me the water?
Karen Tani: Yes.
Judy Heumann: Thanks, Karen. Excuse me.
And now, we’re discussing this morning around universal design, because if universal design was something that was the premise, then we wouldn’t be seeing new airplanes still being constructed, and they last much longer than buses. But I’m not saying this to say, “Woe is us.” I am really saying it because we need to be looking much more at what do we need, not just as a disability community, but as others to really look at what we need to do.
How do we put our demands forward? How do we use the different strategies, which Karen was discussing, everything from letter writing to, is the media covering these issues? On the doctor issue, there’s been a series of these articles. Now, what comes after it? We’ll see. And airline travel, there’ve been some more pieces about the problems of airline travel, but the question is, what do we do once the problems are more exposed? Who’s out there really pushing the change?
Sabine: Thank you. Thanks so much for the talk, Judy, I study in…
Judy Heumann: What’s your name?
Sabine: My name is Sabine. I study in the College of Environmental Design. And so this question is related to universal design. And you mentioned how you didn’t attend a meeting at the board meeting because of a lack of accessibility. And I think in architecture, it often focuses on just compliance for accessibility in a building, so you often see side entrances or machinery that needs to be operated by a secondary person in order to gain access.
And I just wanted to know if you could talk about maybe an experience that you’ve had in built environment where you felt truly celebrated and inclusive in that space and what that type of accessibility feels like when it’s not just compliance-based.
Judy Heumann: I mean, I think if you look at the Ed Roberts campus, which is right here, that’s a great example. And Joan Leon was one of the people integrally involved in the design of the center. Although, I have to say, I was in there the other day, and in the bathroom, there are definitely things I would like to put in there, but it’s got a great ramp, it’s got electric doors, it’s got all kinds of things that make it really very valuable. And it was a building that was designed with the input of so many disabled people with all types of disabilities. So, I think that was something that really is a model. But also, the Ford Foundation did a renovation of its building, and I would say it did a very good job, not a perfect job, but a very good job. And again, the company they worked with had a history of doing good work in the area of design and speaking with the community on and on.
So, I think there are a lot more examples out there of how to do it right. And that’s in part what you’re asking about, right? How to do it right?
Sabine: And what it feels like.
Judy Heumann: And what?
Sabine: What it feels like personally.
Judy Heumann: It feels seamless, right? So, I don’t know how to relate it to how a walking person feels, but I’d like to design the buildings for walking people, and then let them answer the question, how does it feel? My fantasy has been that we throw strings out windows and we make people climb up to the second floor by hoisting themselves up, or that… Another fantasy I have is no toilets on airplanes. That’s my fantasy. I’d probably better yet shut the toilets off in the airplane so that people get it. It’s like, how do you make people… I was on a committee for a short period of time that was looking at airplanes or narrow body planes, and the issue of toilets came up, and I raised the point of needing accessible toilets. And people kind of laughed. And I said… They did.
It wasn’t like a raucous laugh, but it was like a haha. And I said, “Well…” I thought the answer would be that there should be no toilets on the airplanes. And there was this dead silence. And somebody said, “Really?” I said, “Yeah, why do you get to go to the bathroom? I don’t. Why do I have to wear a diaper on an airplane and worry about not drinking for one or two days so that I can fly on an airplane?
If I’m going to fly overseas, what do I do? So, I think your question is a really good one, but I think in what you’re studying, there needs to be real examples of what do you have that I don’t have, and what would it feel like… because I don’t know what it feels like to be able to use a bathroom on an airplane. I mean, I do know what it feels like when buildings were not accessible and where they are. I’ve got a good story.
So, there was a movie theater in Oakland that… This is after 504, but remember, ADA wasn’t around then. And Mary Lou Breslin and Kitty Cone and myself and some others… The owner of the movie theater, like what’s happening all across the country, was saying that if you used a wheelchair, you could not sit in your wheelchair. You were a fire hazard. You got to transfer. But of course, people couldn’t transfer. And of course, we really would be a fire hazard if we got put in a chair and didn’t have our wheelchair. If there really was a fire, how the hell were we getting going to get out? And so, we planned that the three of us went, and we brought a number of non-disabled looking people, and we planted them — we all bought tickets, of course — and put them in different parts of the theater and decided that what we would do is try to go in, and if there was an issue…
So, we went to buy our tickets, and they weren’t going to sell them because we weren’t going to get out of our wheelchairs. And they said they’re going to call the fire department. And we said, “Please do. But sell us our tickets. We’ll go in, and when the fire department comes, we’ll go out.” And so, they sold us the tickets. The fire department came, and the people that we had planted in the audience started going, “Shh, shh.” They were interrupting the movie. And we had our cards, and we gave them our cards, and we said we’d be happy to meet them at CIL. And of course, they left, and we watched the rest of the movie.
And the owner of the theater or manager took seats out. And that’s before ADA. But those are some of the things that, what is the equivalent? And I think the only way to think about it is, what would your equivalent be for what we have to deal with? And that’s why I say things like pull yourself up on a string, have no bathrooms, have all these things that people take for granted. I mean, you’re designing and designing for yourself. So, that’s my answer to your question.
Audience 2: All right. Hi, Judy. As I was just kind of reflecting on everything you and your community has accomplished, you were really a part of an era of transformational change with the Section 504 and the ADA. And as we look today in 2022, I feel like we’re in a similar era of we’re in the midst of transformational change, or that will be coming, and a lot of us are in institutions where we’re trying to make change. Or maybe we’re on the outside and we’re like, “Oh, we want to make a big change” for disabled people or maybe for BIPOC people, whatever area you’re focused.
Judy Heumann: Or BIPOC disabled people.
Audience 2: Exactly, or the intersections thereof of those communities. And I’m curious what advice you might have for people who are organizing and trying to make that transformational change, as someone who was able to do that in your career.
Judy Heumann: I mean, I did it with so many other people, and it’s consciously being done. And the times change. And so, what I think needs to be looked at is, where are you trying to make the change? Is it a local change? For example, there were lawsuits that CIL brought against the county of Alameda when it was buying inaccessible buses and legal action, stopping traffic, various things. But then with Alameda County, there was a consortia that was put together of all the nonprofits that were getting money from the county board. And we worked together, and we worked in a way that was intended not to throw any one of the groups down the toilet when the budgeting was being done. So, that meant that we had to work together.
I don’t know if those things still go on, but they did while I was working over at CIL. And those are very valuable because we were learning about each other’s issues at the same time that we were really also encouraging other groups to be serving disabled people and understanding, at that point, the emerging approach of looking not at charity, disability as charity, but as a rights-based issue. And the stories vary, right? But it’s the same as in any effective organizing approaches. It’s what are we trying to change? What are the laws that need to be changed? Is it implementation? Is it training? Is it bringing more people out, getting their stories told? How do we band together with a reasonable similar objective that we can continue to work on?
I was a senior fellow at the Ford Foundation. And Darren Walker, who was the president then and still is now, really began to take on the issue of inclusion. And if you look at the work that they’ve done, it’s been really very different than most others because they really made a commitment to making changes from within, so training of staff, looking at how their money was being spent, how disability was being included. It’s not where it needs to be now, but it’s way ahead of where it was a few years ago.
And he very much recognized that it was beyond just the Ford Foundation, so he convened a meeting of other foundations to learn about what they were doing. And now they’ve set up this President’s Council of about 15 or 16 moderate to large foundations who have committed to two things: putting money into a fund now that’s handled by the Borealis Foundation, which is focusing on disability with an emphasis on underrepresented populations of disabled people, and also those foundations have made the commitment to working on inclusion of disability within their organizations, not just within personnel but in the way they’re giving their grant money.
So I think for me, it’s always put a disability lens on what’s going on or whatever lens you want to put on, or a multifaceted lens, but really require that… I mean, Darren really holds people accountable. And that’s why I think it’s so very important that it’s got to be the senior leadership of whatever the entity is. And you see it at Microsoft, and you see it at Google, and you see it at smaller companies also. But it is something that we are seeing some important changes in, not at all where it needs to be, but much more than it was.
Audience 3: Hi, Judy. Thank you so much for speaking. I have to say that Crip Camp and your book Being Heumann are revelatory to someone who is able-bodied. And I would like to say that I wish I had known more about the disability rights movement growing up and learning about it in school, but I don’t think I was sufficiently educated about it. I was wondering, do you think that primary and secondary education does a sufficient job in educating students about the disability rights movement? And what do you think can be improved?
Judy Heumann: Obviously, the answer is no. If it was yes, I wouldn’t be here probably. I think California is one of a few states that does require disability to be included in some of the teaching going on in elementary school and high school. There are a number of other states, not that many. But it’s still insufficient because the teachers who are being taught how they teach social studies or any history and other important areas of learning, media representation, etc., really are not being taught about the importance of including disability in their teaching. And so, subsequently, many people are coming into the classroom where they don’t have the tools, nor are they being directed to do this.
When I was teaching in the early ’70s, we had to teach Black history for a month [inaudible]. But what was great about it was we got a very thick book. And so, the book really explained what it was we were to do. It gave us lessons, gave us history so that you could get up and really be working with the students and feel knowledgeable about what you were supposed to do. But I’ve never seen that really in the area of disability. Maybe it does exist in California now, I don’t know. But I’ve never heard about it.
But the other good thing is I think more young people are also saying the same thing you are. And so, I’m hearing more schools that are looking at Crip Camp, reading different… my book, other people’s books, focusing on it. So, there’s slowly more work coming forward, more discussions and knowledge.
Jane Fink: Should we take one more question?
Judy Heumann: Somebody in the middle? Raise your hands higher, guys.
Emily: Hi, Judy. It’s Emily. And I’m not going to cry today. But my question is, what is your advice for someone who has a disability navigating an ableist system? For me, specifically, it’s academia, but I know it can apply to many corporate worlds, as well.
Judy Heumann: I think it’s important to align yourself with other people to get support, moral support in some cases. I presume, I don’t know, that maybe you’ve articulated what the issues are and you’re not feeling that things are being responded to appropriately. I mean, it’s one of the reasons why I really talk about all of the different groups that we have in race and gender, da, da, da, da, where disability is not included.
And I think Karen and I have been discussing this a little bit. I define myself as a disabled Jewish woman. So, I want the women’s group to know that disability is something they need to deal with. I want the Jewish group to know that disability is something they need to learn about, the Black group, the Asian group, the whatever they are. I don’t want people to see disability affinity groups or cultural groups as the only place these discussions need to go on because it may well be that ableism is part of what you’re dealing with. It may also be racism and sexism.
And I think another issue is… This is the way I describe it. When I went through the Jewish door, I didn’t go through it by myself because it was scary just to, by myself, be talking about why is [inaudible] not accessible? Why are we saying certain things, doing certain things? Why aren’t we discussing how to do things differently? But when we were able to get together over many, many years… Because that’s, in part, my experience, that these changes take many, many years. You’ve got to get people to first even acknowledge…
We need to be coming together to be making people see what is happening. They maybe don’t have to acknowledge that they agree with what we’re saying, but they do have to understand they have to change. And that’s why I keep talking about leadership. So, if you’re in a situation where there are multiple people and you keep going through different doors and feeling that you’re experiencing ableism… And what does that mean? What does it mean to experience ableism? And we each define it differently. But for me, it’s being looked at as “other.”
I was talking Karen today — over the last number of months, I’ve kind of noticed that in my neighborhood in Washington, D.C., and maybe it’s more… I guess because we’re in the house so much with COVID, but now that we’re out and about, many of the stores in my neighborhood, the doors are not… I can’t open them. So, people will be coming down the street, and I’ll be, “Excuse me, could you open the door?” And I’ll find sometimes that, “Excuse me, excuse me, excuse me,” trying to get them to listen to me. And I know that I don’t always have a loud voice, but I’ve learned to feel that if I can get them to listen to, “Will you open the door…” Because that doesn’t happen frequently. They’re just gone. If I can get them to hear, “Can you open the door?” they’ll kind of break out of a trance, literally, and the, “Oh, okay, sure, I’ll be happy to help you open the door.”
They’re avoiding me for some reason. It’s not just me. Then a couple of weeks ago, I was on some Zoom call with people I didn’t know. And this woman described exactly the same phenomena that I was describing. It’s kind of being there, but being invisible or a very blank face. You’re saying something, and they’re like… Have you ever experienced that with me, Kylie?
Kylie: Oh, yeah.
Judy Heumann: Yeah. Kylie and I work together. So, it’s getting people to understand that what is… That’s ableism. That’s like not believing that I’m actually saying something or something that would be worth listening to. Many of us experience it. But then it depends if you have an intellectual disability, whatever the disability may be, and the context of which the situation may be arising in where people are being disregarded, not listened to.
I think one comment that I’ve heard a lot from people watching Crip Camp is people listened to each other. We spent a lot of time listening to each other. And sometimes it was like, “Oh my God, it’s so early in the morning, we need to go to bed.” But it was very important to… It wasn’t really setting an example. It was saying that everyone’s voice mattered. Now we all know that we don’t… I don’t say equally great things all the time, very few. And none of us are always profound in what we’re saying. But nonetheless, you want to be heard. And I think that’s what this is a lot about, your ability with other people to figure out a way to be heard and to have something happen when you are heard.
And I think that’s what people need to understand is… And maybe that’s something going on, again, more at Berkeley, that people who feel maligned and that they’re not able to make benefit from the institution, because I think that’s another issue. And it could be a faculty person who isn’t able to contribute what they could contribute if they were able to get the same level of respect and/or accommodations. That’s an issue, or students who are afraid to speak up are not getting their accommodations or just are…
I mean, I’ve heard so many amazing stories as I do presentations, a lot on Zoom. Faculty and a couple of school kids were telling me that a professor would get up in front of other students and say, “You shouldn’t be a major in this, you can’t do this” because they had a disability. But I’ve heard it multiple times. It’s just astounding.
And for one of the kids, I met her in person, and I said, “So, when they said this to you, what did you do?” And she said, “I studied really hard, and I got an A in his class.” And she is majoring in this particular area. I said, “Did you ever go back to him and tell him,” it was a him, “Did you ever go back to him and say, ‘This is what you said to me, and this is the harm that you did to me, and this is how I had to deal with it’?” And she hadn’t. I think she was afraid of doing it. I said, “Well, write him a letter. Who sends a letter? Send him an email.”
But my friend Kitty, who passed away, I would call her, and I had this thing where I would say, “Am I a martian?” because I would be in a situation, mainly with non-disabled people, and something would happen. And I would emotionally drop out. I just didn’t want to deal anymore. So, I would call her and say, “Blah, blah, blah, this happened. Am I a martian?” meaning, why are people acting like that? And sometimes you just don’t have the energy to deal in each one of these situations. But I encourage you to speak to other people, get the support that you need, and do your very best. But know that you’re right.
[Music: “Silver Lanyard” by Blue Dot Sessions]
Outro: You’ve been listening to Berkeley Talks, a Berkeley News podcast from the Office of Communications and Public Affairs that features lectures and conversations at UC Berkeley. You can subscribe on Spotify, Apple Podcasts or wherever you listen. You can find all of our podcast episodes with transcripts and photos on Berkeley News at news.berkeley.edu/podcasts.