This week, Off-Kilter is taking a break from our ongoing series about self-care as political warfare to honor the life and legacy of Judy Heumann, an iconic civil rights leader and the godmother of the disability rights movement. Judy passed away on March 4, 2023, at age 75.
It was especially important to the Off-Kilter team and to many of us at The Century Foundation to do a tribute to Judy for this week’s episode of the podcast because she was a mentor, friend, and an inspiration to so many of us personally, as is true for nearly everyone involved with the movement for disability rights and justice. Those of us engaged in disability rights advocacy and activism today simply wouldn’t be doing this work if not for the trail Judy blazed.
Meanwhile, TCF’s Disability Economic Justice Collaborative, which works across dozens of advocacy organizations to bring a disability lens across all policymaking in the United States, is the direct outgrowth of not just Judy’s work but also her teachings. As Judy often put it, speaking of advances like Section 504 of the Rehabilitation Act and the Americans with Disabilities Act—the landmark public policies that first created civil rights protections for people with disabilities in the United States in the latter part of the twentieth century—“none of these things can be done by any one group.”
There was a lot that was magical about Judy Heumann. Her courage. Her perseverance. Her refusal to take no for an answer in the face of a society that simply wasn’t built for disabled people. But one theme rang like a throughline throughout the celebration of Judy’s life held earlier this week, and that’s that Judy knew the power of connection, and collaboration was her default. This was a teaching she modeled and passed on to so many of us as a key principle when it comes to how to be an effective advocate.
So it is with a heavy heart, balanced out with immeasurable gratitude and love, that we dedicate this week’s episode of Off-Kilter to celebrating the life of Judy Heumann. Rebecca was joined for this special tribute by several members of TCF’s Disability Economic Justice Team: Kim Knackstedt, Kings Floyd, and Emily Ladau.
JUDY HEUMANN: I’m a 73-year-old disabled woman who had polio in 1949. And I came into this work because I’m a 73-year-old post-polio, [laughing] had polio in 1949! And discrimination was something that existed then, and I learned from my mother and my father that advocacy was something that I had to learn to do in order to be able to help create a society that I wanted to live in. And along the way, I really recognized that I love working with other people and that I really loved being with other disabled people who were experiencing similar types of discrimination and had a vision of how we wanted to change the world!
[bright theme music]
REBECCA VALLAS (HOST): Welcome to Off-Kilter, a podcast about the fight for economic liberation and what it will take to set us all free, powered by The Century Foundation. I’m Rebecca Vallas. Every week I talk with visionary leaders working to disrupt the off-kilter imbalance of power in the U.S. to build a society where everyone can thrive and experience the shared abundance we all deserve.
And this week, Off-Kilter’s taking a break from our ongoing series about self-care as political warfare to honor the life and legacy of Judy Heumann, an iconic civil rights leader and the godmother of the disability rights movement. Judy passed away on March 4th, 2023, at age 75. It was especially important to me and many others at The Century Foundation to do a tribute to Judy for this week’s episode of the podcast because she was a mentor, a friend, and an inspiration to so many of us personally, as is true for nearly everyone involved with the movement for disability rights and justice. Those of us engaged in disability rights advocacy and activism today simply wouldn’t be doing this work if not for the trail Judy blazed. And so much of the work leaders across the community have done over the years to advance disability rights and justice doesn’t just stand on the shoulders of Judy’s pioneering work over the decades. In many cases, she directly facilitated it.
Meanwhile, The Century Foundation’s Disability Economic Justice Collaborative, which brings together dozens of advocacy organizations to work in tandem to bring a disability lens across all policymaking in the U.S., is the direct outgrowth of not just Judy’s work, but her teachings. As Judy often put it, speaking of advances like Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which afforded the first civil rights protections to people with disabilities in the U.S. in the latter part of the 20th century, none of these things can be done by any one group.
There was a lot that was magical about Judy Heumann: her courage, her perseverance, her refusal to take “no” for an answer in the face of a society that simply wasn’t built for disabled people. But one theme rang like a throughline throughout the celebration of Judy’s life held earlier this week. And that’s that Judy knew the power of connection, and collaboration was her default. This was a teaching she modeled and passed on to many of us as a key principle when it comes to how to be an effective advocate. So, it is with a heavy heart, balanced out with immeasurable gratitude and love that we dedicate this week’s episode of Off-Kilter to celebrating the life of Judy Heumann.
And it feels like the right place to start is to let Judy speak for herself. So, first, we’ll turn to an excerpt of a conversation I had with Judy the last time she was a guest on this podcast in September of last year. She talks about what it was like for her and other disabled children growing up in the U.S. before there were disability civil rights protections. And she tells the story of what came to be known as the 504 sit-ins, the longest takeover of a federal building in American history, which led to the enactment of Section 504 of the Rehabilitation Act and eventually the Americans with Disabilities Act itself. This was part of a conversation that also featured Rebecca Cokley and Mia Ives-Rublee, who now leads CAP’s Disability Justice Initiative, both of whom you’ll hear referenced in the recording. Let’s take a listen.
JUDY HEUMANN: For children that acquire their disabilities, the ability for parents to see their children who have one or more types of disabilities as being deserving of obtaining the same opportunities as their non-disabled children or non-disabled neighbors or family, whatever, is really very critical. Because like any family, the people that are helping raise the children really set an example. And so, that’s why I was saying earlier my parents really did not allow “no” to be something that they would just accept.
But in the time that I was growing up, because there weren’t any laws, and there was an organization called the March of Dimes. But as my mother learned pretty early on when I was like in the 7th or 8th grade, the March of Dimes raised money for research but did not get involved politically. And what that basically meant was when I was denied the right to go to school because the Principal said I was a fire hazard, and I had a teacher who was sent by the Board of Ed of New York City for only two and a half hours a week for basically 1st, 2nd, 3rd, and half of the 4th grade. And then I went to these special classes where, at that point, children stayed till they were 21, although we were in a regular school building, and kids left in the 6th grade if they didn’t have a disability. My mother and other mothers learned that if you had a child with a disability who couldn’t get up and down steps or walk up and down steps in a high school, that there were no high schools that were accessible. And so, kids were going back to home instruction. So, my mom and other mothers organized with the Board of Ed and were able to get some of the schools made accessible. So, that meant I was the first student in my HC21 class to actually go to a high school. All of those things, I think, were very important.
And, you know, I had the opportunity, both when I was going to segregated classes where I wasn’t learning very much, but I was meeting kids who had different types of disabilities. And we were very much seeing that our expectations and our families’ expectations, by and large, were not at all in line with what the Board of Ed or the employer or anyone else was really thinking about for us. So, that really started me and others at a young age beginning to think about what were the barriers.
And for those of you who’ve watched Crip Camp, I think you’ll see this group of disabled young people who were speaking up about what we wanted in our lives. And I think that’s really what happened. We began to learn from the Civil Rights movement, the women’s rights movement, the anti-war movement, the aging movement, the Gray Panthers movement about how other people were organizing.
And I think one of the problems that we face, and in many ways still face today, although social media, I think, is being very helpful in this regard, is the ability to come together to work together, to organize together. And I think that’s something that we worked on reasonably successfully over the last number of decades. So, all those types of activities that really were putting us on a path of wanting to be able to be a part of the general society. And we could talk about this stuff for days. But I think basically, for the audience to understand, there was a real opportunity in the 1970s and ‘80s and 1990 where there were many things that were coming into alignment. The disability community, both for those of us with disabilities, were creating our own organizations. But there were other organizations like United Cerebral Palsy and the ARC, which works with people who have intellectual and developmental disabilities, and various veterans organizations that were beginning to come together and really working on creating many major pieces of legislation: the Individuals with Disabilities Education being one of the major ones that came about in December of 1975 and Section 5 of the Rehabilitation Act of 1973 as amended, which had, amongst other provisions, Section 504, which made it illegal to discriminate against someone with a disability if, in fact, they were receiving money from the federal government.
When the Civil Rights Act was passed in 1964, disability was not a part of that legislation. So, it took really until 1990, between 504 and other provisions and the Americans with Disabilities Act, for disabled people to have somewhat of an equivalent protection in legislation. But along that 20-year trail, we did see a maturing of the disability community of the recognition that we as disabled people needed to be spokespersons. We needed to learn the legislative process, which I think we’ve been doing a much better job on than we were in like the late-’60s and early-’70s. Now, there are many people in the disability community who are very knowledgeable, very sophisticated about how to work the legislative system at the federal and state and local level. I mean, I would say that right now, the big issues that we’re needing to work on are implementation of existing laws, and we will get into discussing some of the other issues like Home and Community-Based Services.
VALLAS: And, Judy, staying with you for just a moment, because I feel like it’s worth continuing the history lesson here just a little bit before we get into closer to present day. You were a major driving force, as were several others that you’re referencing, who went to the legendary summer camp called Camp Jened, which is featured in Crip Camp, the documentary that you and I have both referenced. You all were a major driving force behind the ultimate passage of key civil rights laws and regulations for people with disabilities. But these were much harder fought victories than I think a lot of folks may be aware who don’t know that history. Talk a little bit about how you all came to kickstart what became the disability rights movement. If I understand correctly, it actually started in earnest with the launch of an organization that you led called DIA, Disabled in Action, and a lawsuit against a horrifically inhumane institution for disabled kids called Willowbrook.
HEUMANN: So, the Willowbrook lawsuit was not one that Disabled in Action was involved with. Basically, there were a number of pieces of litigation that had started in the ‘60s and ‘70s. And Willowbrook really got broken open by Geraldo Rivera when he did an exposé because Bill Bronston and another doctor named Michael Somebody (I can’t remember his last name) gave Rivera the keys to one of the wards in Willowbrook, and he came in unannounced. There were other pieces of, there were other laws. There’s Painters lawsuit and a number of others that other lawyers had brought in the 1960s and continued to bring even through today on these institutions.
Disabled in Action was one of the major organizations in New York City that organized the demonstrations when President Nixon vetoed the Rehabilitation Act in 1972. And I think it was kind of a precursor to what was gonna happen later on in the Bay Area in California with the takeover of the federal building. I think what’s really important to understand is there were many moving parts, and the importance of the disability community beginning to organize and create our own voice was very important as we were moving forward with these pieces of legislation. And Section 504 and the regulations, I think people understand you can have a law, and then you get regulations which are put forward to help people learn about what the law requires and what the law doesn’t require. So, really, when Section 504 finally was signed into law as a part of the Rehab Act in 1973, it was a 42-word piece of legislation that had no definition of what was a disability, what were you gonna do with all this inaccessibility?
And so, there were a number of years where the Department of Justice—I’m sorry, at that point it was the Department of Health, Education, and Welfare—really began to work across the country to understand more of what was discrimination, and what were the kinds of remedies that could, in fact, be put forward. For example, there wasn’t gonna be a way that you were gonna say like, within one year, every public school and every hospital and every university that got money from the federal government was gonna have to be accessible. So, if you look at the regulations, you’ll see that they say things like anything new that’s gonna be built has to be accessible. Anything that’s being modified is gonna have to be accessible. Then they also look at the totality of programs to look at what would have to happen in a school district, for example, to make sure that disabled kids would not have to go to segregated settings in order to be able to receive an education.
And as we were learning, there were more groups being created. When I went out to Berkeley, it was both to go to graduate school and to get involved with an organization called the Center for Independent Living. Today there are more than 500 Centers across the United States. And in 1975 there was a short-lived organization called the American Coalition of Citizens with Disabilities. Unfortunately, it only lived from ‘75 to ‘82, but—and I mention this in particular because of what you’ve asked Becca—and that is that this organization, it was a cross-disability organization that, for the first time, was a national group. Their executive director was Deaf. The president of the Board was a blind woman, and people with other forms of disabilities were on the Board. And this organization being in D.C. was really the leading group that when the 504 regulations were not signed by the Ford administration, and then when the Carter administration was dragging their feet, it was this organization that did a call around the country for the members of ACCD to have demonstrations in the regional offices of the federal government.
Now, the Bay Area was the most well organized. And Becca was really, Cokley, was referencing the Bay Area earlier. And again, not for today, but there were many reasons why the Bay Area was really a pivotal point because there were a number of Centers for Independent Living already in 1977, and there’d been a great deal of work between the Centers and labor unions in the women’s community and others, which really enabled us to have this demonstration, which lasted for like 26, 27 days and is the longest takeover of a federal building in the United States history and resulted in the 504 regulations being signed in the form that we felt were appropriate. And I think those activities really helped very much begin to empower disabled people to recognize that we could do things that we felt in the past we couldn’t.
Now, would those demonstrations have been as successful in other cities? I don’t know. But we did have the right environment overall in the Bay Area. So, the Black Panthers helped with food. Major organizations were supportive, and the mayor himself was very supportive, mayor of San Francisco, Moscone, who was very supportive. So, it was kind of the right time, and I think really, has been a critical part of the work that’s gone on around the country. But the ADA and 504, none of these things could’ve been done by any one group. And I think that’s what’s really important. You know, it’s that there are a lot of cogs, and they have to be rotating at the same time in sync. And that’s why I think we’re moving to where we are today, which is in a much better direction.
VALLAS: You can find the full conversation with Judy, Rebecca Cokley, Mia Ives-Rublee, and Congresswoman Ayanna Pressley in our show notes for this episode or by scrolling back in our episode archive. The title of that episode is The Ongoing Fight For Disability Economic Justice 32 Years After the ADA.
Many people discovered Judy Heumann thanks to the 2020 film Crip Camp, which is well worth the watch if you still haven’t seen it. But Judy has long been a legend to disabled people around the globe and a mentor to nearly everyone in the movement for disability rights and justice. As was said in the celebration of her life earlier this week, while Judy may not have had any children of her own, at the same time, she had hundreds of children. And all of us who are part of The Century Foundation’s Disability Economic Justice team and the Disability Economic Justice Collaborative are proud to be Judy’s children. So, as we continue this tribute to the life and legacy of Judy Heumann, after the service on Wednesday of this week, I sat down with several members of The Century Foundation’s Disability Economic Justice Team to share our favorite memories of Judy, what we learned from her, how she inspired our work and careers, and to reflect on how the team and the collaborative literally wouldn’t exist without the trail she blazed for all of us. Let’s take a listen.
King’s, Emily, Kim, it is super, super fun to get to sit down with all of you and honor Judy’s legacy. And I wish I were spending time with all of you under better circumstances. But I have to say, it’s been really meaningful getting to spend this day with you and in community with so many folks across the disability community. So, for context, we just came from the service at the synagogue with I don’t even know how many people were there. It was like overflow room after overflow room. The world came to celebrate Judy’s life, as was what needed to happen. But we all felt like the right thing to do was to take some time ourselves to really share some stories about Judy, to share some personal memories, given that she really has been and was a mentor to each of us and in different ways. I think it’s fair to say none of us would be doing this work today, and none of us would know each other, and none of us would be in the roles that we’re in if not for Judy Heumann. So, I know she’s with us in spirit for this conversation, and she’s probably laughing at us and probably already has some kind of a criticism to offer about something I’ve said! [laughs] She’s shaking a finger somewhere up there.
But I’m gonna kick this conversation off by asking each of you to introduce yourselves so that folks can hear your voices. And then I’m really looking forward to getting into this conversation. So, Kings, you are the newest of the bunch to come on Off-Kilter. You’ve been, you’re no stranger to the show because these days you’re one of the producers of Off-Kilter behind the scenes. But I’m really excited to have you on the airwaves. So, share a little bit about who you are and how you come to this work.
KINGS FLOYD: Yeah, absolutely. So, hi, everyone. My name is Kings Floyd. My pronouns are she/her. I have the absolute pleasure of working with everyone around the table at The Century Foundation as part of the Disability Economic Justice Collaborative. And I met Judy when I first moved to D.C. in 2016, but I had heard many, many wonderful things about her from 14 years on and even before, without just recognizing that she was the force behind the power.
VALLAS: I love that. And so much of this conversation, I think, is gonna bring in how we knew her and our various memories of her. So, let’s add that into the introductions here, how you first met Judy or how you first remember meeting Judy.
Emily, you were just on Off-Kilter a few weeks ago. It’s lovely to have you back. Again, I wish the circumstances were better, but I know Judy meant a lot to you as well. So, remind Off-Kilter’s listeners a little bit about who you are, and maybe if you wanna invoke the first time you remember meeting Judy.
EMILY LADAU: Yeah, I am really happy to be back in spite of the circumstances. I think that this is a good opportunity to be celebratory. And as for who I am, quick reminder, I am the editor of the Voices of Disability Economic Justice Project. And so, yes, I was on just a few weeks ago to talk about that project and the way that we shared and amplified stories and will continue to do so. And I think that that’s probably the perfect segue to how I knew of Judy first was by reading her story and learning about her because I was trying to research and understand more about the disability community and more about my own identity. And so, I think I felt like I knew Judy before I actually knew Judy!
But one of my very distinct earlier memories was that she reached out to me to get lunch in New York City. And so, we met up to just talk and chat, and we were in Bryant Park. And we came across a hot dog stand, and she was so excited! And I hate hot dogs, but she said, “I have to get a New York frankfurter! I just, I have to get one.” And so, the first picture that I have with just Judy, she has the New York frankfurter sitting proudly on her lap in the photo, and she just is so happy about it.
LADAU: And I don’t know if she was happier to eat the hot dog or to see me, but I’d like to think that that was a positive moment and that I was associated with hot dogs in her mind. And she loves hot dogs.
VALLAS: It certainly can’t have hurt.
VALLAS and LADAU: [laugh]
VALLAS: I have to say, there were many stories about Judy that were shared that I had heard. There were many that I had not heard as part of the service. She had family and friends and a lot of folks sharing stories. And the frankfurters came up as actually one of her favorite things in the world, right? The frankfurter with sauerkraut and mustard and all of that. So, it was important enough to her to make it into the eulogy.
LADAU: [delighted laugh]
VALLAS: So, I’d say it was probably helpful that that was involved in your first meeting. And Kim, you’ve been on the show before as well.
KIM KNACKSTEDT: Mmhmm.
VALLAS: And Judy has been important to you as well. And we’re all, I should say, members of the ADA generation. Literally none of us would be in the roles that we’re in if not for Judy. Do you wanna talk a little bit about how you come to this work and how you first met Judy?
KNACKSTEDT: Yeah! And yes, hello again, everyone. Glad to be back. So, again, as a reminder, as others did, Kim Knackstedt. And I have the pleasure of working with everyone around the table as well and lead our Disability Economic Justice team. I’m director of the Disability Economic Justice Collaborative, which we got to see so many friends from the Collaborative and friends from the community today despite the sad circumstances. But in true Judy fashion, I feel like that’s what she would’ve wanted, is the coming together of everyone. And even though it’s not Judy’s doing specifically, getting to take over the restaurant today for lunch, I feel like is exactly what Judy would’ve wanted, and the toasts that were occurring. So—
VALLAS: Just to say for context—
KNACKSTEDT: Yeah. [laughs]
VALLAS: —we walked out of the service, and it was like, okay, well, we gotta, everyone’s starving.
VALLAS: We gotta have lunch. And we found a nearby restaurant that was fully accessible ‘cause we had a group that some people we’re walking in, some people were rolling in, and we needed it to be a fully accessible restaurant.
VALLAS: And we found this Thai restaurant.
KNACKSTEDT: Delicious, by the way.
VALLAS: Accidentally turned out to be one of Judy’s restaurants that she used to go to ‘cause, of course, it’s right around the corner from her synagogue. We only found that out after we got in there. The entire place was all people who’d been in the service. And so, it was like an extension of the service.
KNACKSTEDT: It really was.
VALLAS: And she was there in spirit, and we all became friends with literally all the other tables, which is exactly how Judy would’ve wanted it to be.
KNACKSTEDT: Pushed some tables together. Yeah.
VALLAS: Creating community even in her passing. But keep going. I just had to add the context.
KNACKSTEDT: Yeah. It was a lovely moment. I think that may’ve been my favorite part of the day even. Yeah! So, Judy was instrumental to me, not more on the getting to know her through my professional capacity versus personal, which I think so many folks shared today. I remember her most as typically scolding me, even the first time I met her, for not texting her enough. I’m like, “I’m just meeting you. You’re Judy Heumann!” You’re this mother of the entire disability rights movement, and you’re sitting here scolding me for not texting you when I don’t even have your number the first time! Which is very classic. And then that continued throughout the entire time I’ve known her. But yeah, I think that’s, that also just is Judy. And so, I know we’ll share more about how she’s impacted our work, but I feel like that also is just exactly who she is. Even if you are just starting to build a relationship with her, she’s telling you, “Well, why didn’t you know me sooner?” [laughs]
VALLAS: Yeah, yeah, yeah. It’s well put. And just to say, right, I mean, this is gonna be a conversation that’s gonna have probably just as much laughter as it has sadness in it. Because Judy wanted and was very specific in her request for how she wanted her service to go and wanted her passing to be acknowledged, she wanted it to be a celebration of life. And so, I think we’re gonna take that seriously and take that forward into this conversation. And Judy brought a lot of laughter to a lot of people over the years. So, it’s hard not to bring that in as we each remember her.
So, Kings, I’m gonna bring you back in and bring this next question to you, which is to talk a little bit about what Judy’s leadership and her role as really the mother of the disability rights movement, what that has meant for you in your life. One of the quotes that—there were many that were incredibly powerful at the service shared by family, friends, others, the rabbis at the synagogue, it was just, it was powerful speaker after powerful speaker—but one of the moments that really resonated deeply for me was one of her family members noted that her lived experience made it impossible for people to think disability was a tragedy. Talk a little bit about what Judy’s pioneering of the disability rights movement as it’s evolved meant for you growing up.
FLOYD: Sure. So, I will be very upfront. I did not have disabled female role models in my life up until I was about 14. And I met a few people, some of whom I’m in touch with now, but many of whom were just in so drastically different places in their lives that mentorship and engagement was important, but I wouldn’t say was the priority for all of the work that was going forward. And as we saw at the Thai restaurant today, Judy was part of the Disability Mentoring Coalition and just strongly believed in mentorship. So, I think I had met her twice or three times, and she said, “Great! Why aren’t you coming to this event?” And it was like an AUCD conference, or it was something. And I was like, “Well, Judy, it’s X amount of money. I don’t have a ticket.” She was like, “Oh.” And she got on her phone, sent a couple text messages, and she’s like, “You need to be there at 6:00.” And I was like, “Oh! Okay, cool. That’s fine. Yep! Just gonna redo my schedule a little bit.”
And the idea that a fiery disabled woman that not only didn’t take “no” for an answer but didn’t ask the question to get “no” to begin with was incredibly influential because it suggested that I didn’t have to ask permission for things that I wanted to be or identities that I wanted to embody in my life. And I had never had a disabled, female disabled role model that was so confident in who they were and so unapologetic with the help that they needed. It really allowed me to advocate personally for what I needed in my day-to-day life from a personal care perspective, which has been invaluable to me throughout my life.
VALLAS: I love that story. And Emily, it’s a great segue into bringing you back in. I feel like a lot of what we heard this morning at the service, and a lot of what we all know in our bones, is Judy is someone who, she created community with everything that she did. She didn’t ever seek to do anything by herself. She was always bringing other folks along. Even if you thought you barely knew her, she was calling you up and saying, “Why don’t you call me more,” right? And that certainly was my experience right after I had thought, I thought we just met. But apparently, we were gonna be friends, and that was what she had decided. Talk a little bit about what Judy’s leadership in this movement meant to you and anything you wanna pull on from what Kings just shared.
LADAU: I think it’s very interesting to consider the fact that I did grow up with someone who I considered a disabled role model, my mom. And my mom was younger than Judy, but they still grew up around the same time. And yet my mom was not really connected with the burgeoning disability rights movement at the time, and so that wasn’t something that she was able to really pass on to me. And she always says that she taught me how to advocate, but I really taught her about disability pride. And that pride came from learning about people like Judy and understanding that I was part of a broader community, and I wasn’t just someone out on the sidelines who had no history, who had no identity.
And also, I am a disabled Jewish New York female, right? And Judy is a disabled Jewish New Yorker! And so, I think that I saw myself in her. And originally, I wanted to be a teacher, too, and I ran into accessibility issues also. And so, I think that really just resonated with me when I realized that there was somebody who came before me who was paving that pathway for me, and I wasn’t alone. And I was somebody who had a culture behind me. I don’t think I really had that concept when I was growing up. But as I started learning about the disability community, I realized, wow! I’m part of something that is so much bigger than myself, and that’s incredible to me.
And Judy wasn’t the type of person who ever treated you like you didn’t belong within the community. There was no hierarchy in the way that she treated anyone. Everybody was welcome in the way that she engaged. And when I first started talking to her, I was like, oh my goodness, I’m talking to disability royalty. But she didn’t make you feel that way. And she really cared about people. I mean, a few summers ago, I had a freak accident, and I broke my leg. And I have a voicemail that I saved from her. And all it says is, “Girl, oh, my God. Call me.” You know? And it was like two days after I was in the hospital. And when I didn’t call her back because I was in the hospital, then she got my mom’s number and started calling my mother! And that was Judy. She just cared about you. And it didn’t matter how busy she was. She wanted to know how you were doing. And I think that was when I realized you don’t need to look at someone like Judy as royalty. She’s human like all of us.
VALLAS: In so many meanings of the word.
LADAU: Yes, yes!
VALLAS: I love that story. And I think all of us and everyone who knew her has some version and many versions of the story of getting phone calls from her weird hours, whether that was 11:00 PM or 4:00 AM or something in between. And just she’d go straight into what she wanted to talk to you about. And we learned in the service this morning, apparently, that started early in life for her. Her brother was sharing that she apparently got in trouble all the time for going way over on their phone bills, growing up as kids, which I have to say, does not surprise me.
VALLAS: But it was because she wanted to be in people’s lives, and she wanted to be in connection all the time.
Kim, I wanna bring you next, and I’m gonna invoke some words from a dear friend and colleague of all of ours, and that’s Rebecca Cokley, who is also very much here in spirit in this conversation. And also, her voice is heard elsewhere in this episode, so, Cokley, you’re with us today! And it was great being with her at the service earlier. Rebecca Cokley wrote an op ed memorializing Judy’s legacy in CNN. And there’s a particular line I wanna share from that op ed that I think is a great segue in to bring you back in, Kim. And that’s that, “her work,” Judy’s work “started outside the system, but then she decided to be an infiltrator. She understood the importance of changing structures from the inside and from the outside.” And Kim, that describes beautifully the very model of change that the team, the Disability Economic Justice team at The Century Foundation, holds dear. It’s also the theory of change of the Disability Economic Justice Collaborative. But it also really describes your own work experience as a leader within the disability rights and justice movement yourself. And you’ve spent a lot of your time inside government just like you’ve spent time outside. Talk a little bit about what Judy’s model has brought for you in terms of inspiring your own leadership in this work.
KNACKSTEDT: Yeah, that quote really resonated with me when I read it, and I thought Cokley did such a nice job of summarizing that. That piece, as well, I think is one of the best written pieces about sort of a tribute to Judy. Yeah. Throughout the last few days, I really reflected on sort of my career and what Judy has meant to me. And even the position I held in the White House, the director of disability policy for the Domestic Policy Council, that idea of that position would not have existed had it not have been for Judy Heumann.
VALLAS: And it didn’t exist before you!
KNACKSTEDT: Right, right. But I mean, that position, that they brought me in to be the first person. But the idea of that position, even acknowledging that disability, one, is a policy area, but even like, even saying the words that we should have a person to direct disability policy across all domestic policy is so meaningful. And it just wouldn’t have existed without people like Judy. And so, I think that is a really big testament to sort of her work and her movement over the years.
And I was thinking even further back to being a teacher. And my students had an IEP. They had 504 plans. None of that, they wouldn’t have even been allowed in schools, like Judy, right? And so, I think back to literally every step of the way that I’ve had, not only in my professional capacity, but then in my personal capacity as well. You know, living, we all live with our own chronic illnesses, disabilities, having to navigate ourselves. But from just purely a professional standpoint, Judy has paved the way for everything I’ve done. And so, I think the idea of how she has, she knew she had to push the system, and she did it in a way that often was quite vocal! And she didn’t resist, that is for sure. But then she also knew that at some point, she had to go inside the system and make a change, and those relationships mattered. And then when she left the system, she knew who to call to keep pushing! And as, again, the time of day when she would call would be all hours, and she would just kind of keep calling and keep pushing. And so, she really knew how to navigate all sides of everything to just get the change that was needed. And it’s like, she was playing multilayer chess while we were all still playing checkers.
VALLAS: Yeah, I love that. And the understanding that she brought and that she taught to so many of us and so many of the current leaders of the movement whom she’s really passing the torch to now as she, as Alice Wong put it, becomes a disabled ancestor.
VALLAS: It was that inside/outside game that she so perfected and that was necessary to get to the point where you even had people who were part of an inside game at all who cared about these issues.
VALLAS: Emily, you wanted to get in as well.
LADAU: Yes. Because what Kim said really resonated with me. I know that there are many activists that I have encountered who feel that to be inside the system is to be a part of the oppression.
LADAU: And I really honor and understand that perspective. But as somebody who has also found myself inside many of these systems, I’ve come to realize that Judy really models what it’s like to balance that.
LADAU: And I feel like as someone who constantly grapples with being a part of the systems that do oppress us, I really worry that maybe sometimes it can cause more harm than good. But then I realize if we don’t have people who are willing to be those infiltrators in the first place, then we’re not going to change the systems because we’re not working within the systems. And so, that, to me, is a huge part of Judy’s legacy that I think we need to acknowledge. She showed us how to strike that balance.
VALLAS: I love that. And I have to say, just the word “infiltration,” it’s like it’s such a Judy word, right?
VALLAS: And it’s a word that I use regularly in describing my own understanding of how to bring disability into work that often leaves the community behind. To me the story that I feel like wants to come into this moment is the origin of the Disability Justice Initiative at the Center for American Progress. This was 2016, and Rebecca Cokley and I are scheming. I don’t know. I think we were at some bar in DuPont having glasses of cruddy liquor, being like, “What do we do?!” [laughs] “Everything’s like”—
KNACKSTEDT: It’s all terrible.
VALLAS: “—not where it should be,” right? I’m trying to save Troy from doing any bleeps here. And what we started to say was like, “Well, what would Judy advise us to do? How do we get there?” Because what we were running up against was we had all these organizations—and I don’t wanna single out the Center for American Progress. They weren’t the only one—we had all these organizations saying, “Yeah, but we don’t do disability.” And we had all these leaders in philanthropy saying, “We don’t fund disability.” And we were going, “How do we break through?” And we realized what we needed was infiltration. What we needed was instead of having folks banging on the door saying, “Let me in, and bring me to the table,” it was, well, how do we infiltrate these powerful institutions?
And so, Judy ended up actually becoming the reason we were able to launch the first-ever disability project at a U.S. think tank, which is what the Disability Justice initiative was, which is wild that in 2017, when it launched, it was the first. It should not have been possible to have taken that long. But Judy was the one who made it possible because she was then at the Ford Foundation. She believed in infiltration. And that’s what she said as we were talking with her. She got it immediately in that first phone call. She said, “Oh, this is infiltration, right? I know what we’re doing here. Yes, I will help you do this,” right? When nobody else, nobody else would say this is something to do. So, that word “infiltration” really rings in my head to this day as a core teaching of Judy’s that I have sought to carry forward and which really describes everything that we’re doing here and everything we do in the Collaborative.
KNACKSTEDT: Maybe that’s our next tattoo!
KNACKSTEDT: “Disabled infiltrators.”
VALLAS: I really like that idea. I like, yeah, before we started taping, for context, we were starting to talk about, you know, how do you honor Judy? And is it some kind of a tattoo that’s a little feisty?
VALLAS: So, we’ll see if that’s where that goes.
So, I wanna turn next to just sharing some of our favorite memories of working with Judy, of knowing Judy, of learning from Judy, maybe favorite stories. I know you guys have no shortage of these. One of the stories that I really, really enjoyed hearing in the service this morning that I did not know before was that she had, so, she was on a plane. And folks were being jerks and trying to get her off the plane. This was in like, it was not that long ago, relatively speaking, in American history, but it was long ago enough that she, as somebody who was in a chair and didn’t have a personal care attendant with her, they were trying to remove her from the plane, and she wouldn’t go. And then the folks on the plane, as the story went, started putting liquor bottles in front of her to make it seem like she’d been drinking, to make it easier to kick her off the plane. And then she said, “Well, you’re gonna have to arrest me.” And that law enforcement came in to remove her. But she, but the end of the story, which is just so classic Judy, is they asked her for ID. And so, she—
FLOYD: Well, she was arrested.
VALLAS: Right. She was. She was arrested. She was removed from the plane. And then they asked her for ID so they could know who she was. And she handed them her ID showing that she had Senate clearance because—
FLOYD: The floor, Senate floor clearance.
KNACKSTEDT: Which is a different level.
VALLAS: Which is, and you would know. You’ve worked in the Senate. And so, they all started backpedaling and going, “Oh, just kidding! We didn’t know who it was we were messing with,” right? So, it’s like a, it’s a classic Judy story. But I know you guys have no shortage of Judy stories. Kings, do you wanna, do you…. Emily, looks like wanna go next.
LADAU: Yeah. For me, it’s definitely a personal one and not a professional one, but it’s a fun one. So, Judy was, I think to a lot of people, a very Jewish grandmotherly type, a Bubbe, we would call her.
VALLAS: Oh, yes!
LADAU: And so, she knew that I had been dating someone. And every time we got on the phone, every time we got on some kind of video chat, her first question was, “Are you engaged yet?” Every time! I think she asked me more than my own grandmothers asked me, [laughing] to be quite honest with you. And I guess now, it gets a little bit sad. I really wanted to tell her that I had started seeing somebody new. And no, I’m not engaged, but he’s a nice Jewish boy. I just wanted to tell her that. And time goes by, as it does, and so I didn’t get the chance to tell her. But I have a feeling that she’s probably up somewhere cracking up because she knows now that she’s in a lot of people’s heads about, “Oh, are you seeing someone? Are you getting married. Gimme the gossip.”
And I think that was what I appreciated so much about her was it didn’t feel like a professional relationship, even though that’s how it started. She really wanted to know what’s going on in your life in, honestly, a very nosy way! [laughs] But I think that was what made her so lovable and charming was she meant absolutely well when she wanted to ask you about your life. She did it because she was personally invested. And it always made me smile. So, no, Judy, I’m not engaged yet, but I am dating someone, just so you know, in case you’re listening.
VALLAS: And he’s a nice Jewish boy.
LADAU: A nice Jewish boy. She’d be kvelling.
VALLAS: When you look up the word “yenta” in the Yiddish dictionary, you see a picture of Judy.
LADAU: Yeah, just her face right there.
VALLAS: And that’s all they need.
VALLAS: My God, I love it. Kings, what Judy stories do wanna tell?
FLOYD: I have two that are my favorite. One is a professional and one is a personal. But actually, they’re both personal, I guess.
FLOYD: So, I’ll talk about first, the first time that I worked with Judy. I was finishing my fellowship at the National Council on Independent Living, and I was doing a project on disability pride. And disability pride is something that I struggle with a lot. As I’ve said, I didn’t have a lot of disabled role models growing up. And so, modeling behavior of strong, competent, feisty, independent in however you interpret that word didn’t exist for me. And I wanted to create this guide to talk with young people with disabilities about how to be proud about their identity, not actually saying that it was something that I was also working on for myself. And so, Kelly Buckland and Tim suggested I reach out to Judy, and Judy met me for coffee. And I was like, “So, Judy, what would be advice to someone you’d, what would be advice you would give to someone that was looking to learn and foster disability pride?” And she goes, “Well, what do you think would be life lessons to learn to foster disability pride?!”
FLOYD: And I was like, “Well, I don’t know. That’s why I’m asking you.” And so, we, you know, I guessed. I guessed a little bit here, I guessed a little bit there. And I went on to interview numerous people about what disability pride meant to them.
Fast forward about five years, and we are at Politics and Prose, and Judy is doing her book signing for Being Heumann. And I am raising my hand. The microphone gets passed to me, and it’s a question and answer portion. And I say, “Judy, what advice would you give to people in the movement that are looking to mentor other young people, to bring them in and help them feel a sense of empowerment in their community?” She goes, “Well, what would you do to make them feel a sense of empowerment in their community?!”
FLOYD: I’m like, “Judy! This is not my book signing. This is your book signing.”
VALLAS: Ah, but she knew what she was doing.
FLOYD: She knew. Yeah. And she always wanted to like, “What do you think?”
VALLAS: Yep, yep.
FLOYD: My other super short one is I am a very crafty person, as many people in this room know.
FLOYD: I love art supplies of any kind, and I loved pottery painting. I went pottery painting once. I was leaving the studio, and I almost literally ran into Judy.
FLOYD: And I was like, “Oh! Judy, hi! How’s it going?” And she’s like, “Oh, good. How are you?” And I’m like, “Good!” I’m like, “What are you doing here?” And she’s like, “Well, I live here.” And I was like, “I’m sorry, what?” And she’s like, “Yeah, my apartment is the second floor or third floor up.” And so, she was like, “What are you doing here?” And I was like, “Well, I’m painting pottery.” She’s like, “Oh! When are we doing that?” And I was like, “All right, whenever want to, Judy!” A year goes by, we finally get pottery on the books, and it is a table of 12 people. It was me and Judy and then two of our friends and then her friend and then their daughters.
FLOYD: And it turned into a party. And Judy is kind of making fun of herself a little bit in a joking way, because we’re all sitting there painting our pieces. And mine does not look anything better than a fourth grader, but Judy thinks hers looks even worse. And I’m like, “Judy, you are good at so many different things. Can you just give other people a small win to be good at something? Because you have really that whole area covered.” And she said, “Well, no! I’m not good at calling people within certain hours.”
FLOYD: And the whole table just looked around and cracked up.
VALLAS: Oh my God!
FLOYD: And I remember being like, all right. Well, Judy not only knows her strengths, but her weaknesses and/or her lovable characteristics that we engage with and endure because we love her. But it just it resonated with me that she was both continuously questioning and continuously humble in both of those, all of the experiences of when I…when she was here.
VALLAS: That’s an amazing story. Both of those stories are amazing, but just the fact that she had that level of self-awareness about the phone behavior and that that became such a part of what people know about her, right?
KNACKSTEDT: It’s so true.
VALLAS: And I feel like that is the…that was the laugh line in so many of the eulogies this morning.
KNACKSTEDT: Oh my gosh, so many.
VALLAS: That was it was all about the phone. It came back to the phone calls.
So, one of the things that was said this morning, there was another quote that really stuck with me was that, “She made a friend on every corner, and she instilled a responsibility to every person she had a conversation with.” And I feel like that’s coming through with all of the stories that everyone’s sharing. She didn’t just have conversations with people. She gave you marching orders. She gave you a charge. And so, I feel like we would be remiss if we didn’t end this conversation by looking forward and by talking about what it looks like for us to carry forward her legacy and not just to think about what she was able to do and what work has already happened up until this point. Her family observed this morning during the service that she passed away on March the 4th. And so, one of her nieces noted in her eulogy that she’s asking, even in her passing, Judy is, she’s asking us, even in her passing to march forth, right? [laughs]
VALLAS: And to carry her work forward. And then her niece put a little edit on that and said, “Or maybe, as Judy would’ve put it, those who can march, march. Those who can roll, roll,” right? And so, I’d love to close by asking each of you to share any thoughts that you wanna offer about what it looks like to honor Judy’s legacy and memory by carrying forward the fight for disability rights and disability justice. And Emily, I don’t know if wanna kick us off there.
LADAU: Sure, I’m happy to. And I’ll share a quick story. On the way down to get here, my mom and I were in Penn Station in New York. We were just gathering ourselves before we were getting on Amtrak. And a man walks up to us, and he tries to hand us $5. And he says, “Do you all need help?” And we said, “No, thank you. No, we’re fine.” And we just kind of looked at each other and then looked at him. And then he looks over, and to the right of us is a gentleman who’s using a manual wheelchair. And he’s Black, and he presents as possibly being unhoused. And he says, “Well, at least you’re better off than that guy.” And then my mom and I were just like, oh, no! And then we just kind of stared at him again. And he said, “Oh, okay! Well, God bless you. God bless you.” And then he walked away. And I was like, wow! What a healthy dose of racism and ableism to start our trip!
And the reason I bring this up is because it’s a reminder that Judy changed the world for us. She is so much of the reason why we were even able to get ourselves to Penn Station, to Amtrak, to a train to get to D.C., right? I mean, the fight for access and the fight for our rights. But now in turn, it’s up to us to continue that fight, to change hearts and minds and attitudes so that we don’t continue to have encounters like that, so that we can be out and about because we are human beings like everybody else, and we belong here. And we should not be subjected to ableism simply for existing. And so, I think my call to action, if you will, is just to continue the work that Judy and so many others started and also, to recognize that now is the chance to make space for people, especially disabled people of color, especially LGBTQIA+ disabled people, right? Especially people of multiple religions who are also disabled. To recognize that what Judy started doesn’t mean that Judy ended.
LADAU: There’s so much more that we can do.
VALLAS: And need to do because we have not achieved the vision that she was carrying forward. We’ve just started to scratch the surface. Kim, do wanna pick up there?
KNACKSTEDT: Yeah, sure. And I think I’ll come in from like the policy side ‘cause you said so much, the rest of it so well, Emily. I think what Judy started is to try to change the structures. We talk about infiltrating. But the thing is, we do still have so much of our systems that aren’t working and need to change. And while I will say they are working for some, they’re not working for most. And so, we still need to make that change, and we still need to kind of carry on her legacy of not just saying, “Well, I guess it’s done” and we let it go, as I think you both said, Kings and Emily, that Judy didn’t take “no” for an answer. She didn’t even ask the question to allow “no.” And so, I think that’s sort of how we have to infiltrate the system and keep doing that to try to shape our policy as the work we’re trying to do is really bring disability to everything we’re doing. ‘Cause I think that’s sort of where Judy took it. She took disability rights around the world, and we’re just now trying to embed disability into everything since we know every issue is a disability issue. Now we just have to help everyone else realize that.
VALLAS: Judy often would issue the clarion call that has now become something that’s popularized enough that a lot of people don’t know that it was something that she really pioneered. And that’s the notion that disability rights are civil rights.
KNACKSTEDT: Mmhmm! Yep.
VALLAS: And we often say today, “Every issue is a disability issue.” But of course, this stands on the scaffolding that Judy pioneered.
Kings, what do you wanna offer in terms of what it looks like to carry forward Judy’s legacy and memory by doing disability rights work?
FLOYD: She was an educator. She was a connector. She was a change maker. And she did it all with this unfailing ability, no matter what you did, to say, “Hey, I love you. You’re doing really good work.” And so, to be able to not only have love for yourself but love for all of the people in the community that are doing the work around you and to be able to turn those loving moments into teachable moments. Because I think she did that so easily every day.
KNACKSTEDT: Mmhmm, mmhmm.
VALLAS: That’s beautifully said, and I feel like the right place to close this conversation, because honestly, there just aren’t really words that can do justice to a civil rights icon the level of which Judy was and has been in this lifetime. And I’m sure she’s got other lifetimes where she’s done amazing things, too, knowing Judy. But Rebecca Cokley wrote in that op ed that I mentioned before, which has so many beautiful words in it, that, “Judy, in her life, in her work, in her relationships and what she endured served as a reminder of where our community has been, but also a reminder of where we need to go.” And this is not a conversation we take lightly as we all have it. Judy is still very much with us and will be with the community for as long as all of us continue to do this work. And none of us, I’ll just repeat, literally would be here doing this work today if not for Judy’s leadership, and also, to your point, Kings, her mentorship. So, thank you, Judy, for everything that you…just for everything!
VALLAS: For everything! And for everything that you did in your time on this earth individually, for each of us and for the movement and the community that we all call home. We love you and we miss you already.
Those were the voices of Kings Floyd, Emily Ladau, and Kim Knackstedt, of The Century Foundation’s Disability Economic Justice Team. As we close out this special Off-Kilter tribute to the life of Judy Heumann, we’ve included a whole bunch of links in show notes for listeners who want to learn more about Judy’s life, her work, and how she changed the world for people with disabilities and for everyone else, too. We love you, Judy. Rest well. We miss you. [theme music plays]