Thirty-one years ago, the fabric of America’s legal and policy landscape changed dramatically for people with disabilities in the United States when the Americans with Disabilities Act, or ADA, was signed into law by President George H. W. Bush, on July 26, 1990. But, as far we’ve come these past thirty-plus years, we still have incredibly far to go. Even prior to the COVID-19 pandemic, disabled people in the United States—who make up one in four Americans—were roughly twice as likely to live in poverty and two to three times more likely to be unemployed. Now, as federal policymakers work to “build back better,” the United States has the opportunity to take another set of historic steps towards achieving the ADA’s promise of equal opportunity, community integration, and participation in American life for people with disabilities—a promise that remains as-yet unfulfilled.
For this special relaunch episode of Off-Kilter, Rebecca talks with four of the disabled women leaders who’ve been making history on the front-lines of the ongoing fight for disability economic justice: Rep. Ayanna Pressley (MA-7); Judy Heumann, whose historic activism jumpstarted the disability rights movement over forty years ago; Rebecca Cokley, a lifelong disability advocate and program officer at the Ford Foundation, where she heads the first U.S. disability rights program at any major foundation in the country; and Mia Ives-Rublee, the director of the Disability Justice Initiative at the Center for American Progress.
- To take action on home and community-based services and SSI: Text SIGN PXPBNX to 50409
- Check out Crip Camp: A Disability Revolution for more on Judy Heumann’s activism and the origins of the disability rights movement at cripcamp.com
[bright theme music]
Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas.
Thirty-one years ago, the fabric of America’s legal and policy landscape changed dramatically for people with disabilities in the U.S. when the Americans with Disabilities Act, or ADA as it’s better known, was signed into law by President George H.W. Bush on July 26th, 1990. Members of the ADA Generation, as my dear friend and lifelong disability activist Rebecca Cokley calls it, have grown up with civil rights laws on the books that have made things possible that their forebears in the disability rights movement could only have dreamed of. This is thanks not only to the ADA, which is without question the best-known set of disability protections in the U.S., but also to a constellation of other watershed disability rights laws and regulations such as the Individuals with Disabilities Education Act, IDEA, and Section 504 of the Rehabilitation Act, which we’ll be hearing lots more about in this episode.
But on the flip side, as far as we’ve come these past 30 years, we still have incredibly far to go. Even prior to a global pandemic that’s hit the disability community especially hard, more than 31 years after the signing of the ADA, disabled people in the U.S.—who make up one in four Americans today—were roughly twice as likely to live in poverty, two to three times more likely to be unemployed, and face labor force participation rates that are just a fraction of their non-disabled counterparts. And now, as federal policymakers work to Build Back Better from the COVID-19 pandemic, the U.S. has the opportunity to take another set of historic steps forward towards achieving the ADA’s promise of equal opportunity, community integration, and participation in American life for people with disabilities, a promise that remains as-yet unfulfilled.
The decades-long fight to make Home and Community-Based Services a right, so that disabled people can access the supports that they need to live independently instead of in isolating and dangerous institutions, has given way to a once-in-a-generation opportunity as Congress now debates whether to include President Biden’s proposed $400 billion investment in Home and Community-Based Services in Democrats’ Build Back Better reconciliation package. What’s at stake? Whether disabled people and seniors no longer languish on years-long waiting lists for permission to participate fully in public life.
Meanwhile, we’re seeing lawmakers finally push to bring Supplemental Security Income, a critical but long-forgotten part of the nation’s Social Security system that provides essential income support to nearly eight million disabled and older Americans, into the 21st century to finally realize President Biden’s pledge that no disabled people and no seniors should ever have to live in poverty in America.
The intersection of poverty, inequality, and disability have long been close to my heart as someone who lives with an invisible disability, as a former legal aid lawyer who represented low-income people with disabilities who’d been failed by an inadequate and inaccessible disability benefits system, and as someone who’s long fought to break down silos in the public policy world, because every issue is a disability issue. And that’s especially true when it comes to poverty. That’s why it’s fitting that as Off-Kilter relaunches with a new home here at The Century Foundation, our first episode is focused on the ongoing fight for disability economic justice more than 31 years after the ADA, and the face of the modern-day disability rights movement, now that the ADA Generation is who’s in the driver’s seat. And I am honored to be joined for this incredibly special relaunch episode by four of the phenomenal disabled women who’ve been making history along the way.
Judy Heumann is an international disability rights advocate whose activism jumpstarted the disability rights movement over 40 years ago and paved the way for disability civil rights legislation, including Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. Listeners may be familiar with her historic activism from the Oscar-nominated documentary Crip Camp, released last year.
Rebecca Cokley is a lifelong disability advocate who currently serves as a program officer at the Ford Foundation, where she heads up the first U.S. disability rights portfolio at any major foundation in the United States. And Mia Ives-Rublee is the director of the Disability Justice Initiative at the Center for American Progress, the first dedicated disability project at a U.S. think tank, which was launched a little over three years ago by Rebecca Cokley in partnership with yours truly.
But first, I had the great pleasure of sitting down with Congresswoman Ayanna Pressley, who represents Massachusetts 7th Congressional District and has become one of the leading champions for the disability community in Congress since opening up about living with alopecia herself. Let’s take a listen.
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VALLAS: Congresswoman, thank you so much for making time for this. And I have to say, it’s an incredible honor to have you as part of this incredibly special relaunch episode for the pod.
REP. AYANNA PRESSLEY: I’m thrilled to be here. Thank you for creating a space where we can reflect, we can rejoice, we can organize, we can mobilize, and speak the truth.
VALLAS: I think we might have to steal that as a new tagline for this show, because that is exactly what we try to do here with Off-Kilter. I would be remiss if I didn’t kick this conversation off by noting that the disability justice fight is a personal one for you. You went public early last year, actually just a few months before the start of the pandemic, about the fact that you live with a condition called alopecia. Talk, if you would, just a little bit about how you come to this work and how you came to the decision to go public about being not just a member of Congress who cares deeply about disability issues, but that you’re also a member of the disability community yourself as well. You gave an exclusive interview at the time to The Root where you talked a lot about how it had a lot to do with the power of representation.
PRESSLEY: Sure. Well, first, I wanna say thank you to the disability community for the warm embrace that I was given upon my alopecia reveal, which is an autoimmune disease where your immune system attacks your hair follicles. There are several forms of alopecia. I have alopecia universalis or totalis and really went through a transformative change on a public stage in real time in basically a five-week period where I went bald and lost my eyebrows and eyelashes and all of that stuff. And it was a transformation not of my choosing, but one that I wanted to stand in fully and do it in the way that I felt the most authentic representation for me. I don’t think I’m especially brave because I’m not wearing a wig. Other people living with traumatic hair loss because of autoimmune diseases or cancer treatment or for whatever reason, in particular women, because of the stigma that we face in that being a bald woman navigating the world or a woman living with traumatic hair loss challenges and disrupts those societal and cultural norms about what is beautiful, what is acceptable, what is professional. So, everyone’s walk is different. And for me, I decided that for my walk that I was electing not to wear hairpieces and wigs, although I did do that very briefly.
And I’ve always seen this work as intersectional because inequity, disparity, injustice, and that oppression and marginalization has been legislated, not naturally occurring. It’s been precise, and it has been intersectional. And so, that’s the way that I seek to organize to movement build, and that’s also the way that I seek to legislate. Disability justice is not about just one bucket of policy; it’s really a critical lens that we have to bring to every policymaking table. And so, that’s why I remain focused on those policies that we need to advance true justice as we take on these fights in the reconciliation process.
VALLAS: And we’ll get a little bit into the reconciliation process because that has, there’s a lot going on in that very public debate right now around really important disability justice priorities that have been sought for quite some time by the community. But you just, you mentioned there right out of the gate—and it’s no surprise because this is often how you talk about disability justice—but you brought up intersectionality. And in so many ways, that isn’t how disability has generally been talked about in the decades leading up to this moment that we find ourselves in now. Some have described the disability community and its leadership of prior years as “pale, stale, and male.” Some people have said, “It’s been a lot of white dudes in wheelchairs.” But you and other leaders in this moment are increasingly centering race in a conversation about disability justice, along with class. Talk a little bit about the importance of having the conversation that way and some of what you’re seeking to do by shifting that conversation and that narrative.
PRESSLEY: Well, I think the fact of the matter is that people do not live in big, checked boxes. As a voter, it has always really stoked my ire that policymakers and elected officials would often single issue a constituency and come to you in the hopes of earning your support by speaking to that one big issue that they deem the most relevant to you. And it gives policymakers a pass. It does a disservice to the reality of our lived experience, which is that we don’t live in these big, checked boxes. We live in complexity, we live in intersectionality, we live in nuance.
And so, I’ve been doing work for a decade-plus to dismantle the school-to-confinement pipeline, which disproportionately is impacted or is bore by Black and brown students and increasingly the criminalization of Black girls. But there was a part of that narrative that was not being amplified enough, and that was the disparate number of students with disabilities who were experiencing greater discipline, suspension, and being on a pathway to confinement or incarceration. And so, the disability community in America has faced systemic disenfranchisement in the form of what I would characterize as policy violence for generations. It’s been happening in public [chuckles], but it has often been ignored, sidelined, marginalized, so, whether you’re talking about from unconscionable barriers to healthcare to income limits for those seeking accessible housing to barriers to marry who you love, or whether you’re talking about disparate impact on school discipline.
So, when we find ourselves in the midst of a so-called national reckoning on racial injustice, this is the inflection point to affirm that disability justice must be part of that intersectional conversation. And we have to affirm that Black disabled lives matter. When nearly half of those murdered by police have a disability, we know that our systems are deeply broken. And so, together we have to legislate healing and justice and accountability in the same way that we have seen hurt and harm legislated, resulting in these inequities and these disparities. And so, it all begins with honest conversation about where we stand, and then intentional legislation has to follow.
VALLAS: And we’re in a moment right now where there is a great deal of legislation that is being drafted, that is actually being moved. It’s not one of those moments where we have lots of bills being introduced that are so-called message bills that are kind of opportunities to start a conversation. We’re in a moment right now where we’ve got huge and potentially historic legislation actually being moved in the form of what’s called this Build Back Better package. Some of the terms get wonky, like budget reconciliation, which now is a term that folks are using almost sort of as a household term because of it being so much at the core of the legislation that’s coming together right now around Build Back Better.
But you started to reference before that there are some incredibly important and actually historic opportunities that Congress has before it right now as lawmakers, and particularly Democrats, who are the ones shaping this reconciliation package. It’s a strategy for getting something done without needing Republican votes. Democrats are debating whether to include, and how much to include of, key priorities like Home and Community-Based Services, something that has been a fight and a push from the disability community for many, many decades, as we’ll actually hear later in this conversation from Judy Heumann and Rebecca Cokley, as well as a set of improvements to a critical but long-forgotten program called SSI, Supplemental Security Income, something that Congress enacted in 1972 and basically forgot about ever since and left beneficiaries to wither on the vine as a result. You are seeing all of this with a very up close and personal front row seat. What do you see as the significance of this moment when it comes to these kinds of very real opportunities that the disability community has been seeking, in many cases, for decades?
PRESSLEY: That’s right. And I wanna again thank those advocates and those everyday folks who have quite literally laid their bodies on the line time and time again affirming their own dignity in the face of many indignities and seeking to have their humanity seen and affirmed fully. Their work has been so critical. Your work has been so critical. And it’s really a testament to the power of representation and the power of organizing. Everyone speaks about how the pandemic has laid bare these inequities and disparities. I know that’s true in the Commonwealth and across the nation. We’ve experienced so many deep and painful losses, and we fought back against deadly and discriminatory policies that would limit access to care for people with disabilities. Every time we have been able to alleviate the suffering, to mitigate the hardship, to advance the humanity, the dignity, and the rights of the disability community, it’s because of the power of organizing and the strength of the movement. And so, our work isn’t over.
In this critical moment where the people have given Democrats the White House, the Senate, the House, I think we have both the majority, and we have a mandate. We have the majority, and we have a mandate. And the Democrats having the House, the Senate, and the White House and being in the majority, it must be more than a talking point. This is the moment to advance critical, long overdue policy change. And I reject the pundits’ false binary choices. Having served on a municipal body before I was elected to Congress, I served on the City Council for eight years, and I was often confronted with these false binary budgetary choices. It’s $400 billion for Home and Community-Based Services and critical SSI reform. It’s housing justice that centers the disability community and free public transit that is accessible. So, in this moment, we have to be bold, and that means rejecting these false binary choices. I don’t believe that there is a deficit of resources, but there is a deficit of empathy. And I don’t believe that anyone is voiceless. But I do believe that there are many people that are unheard. And so, I’m just gonna continue to set this table and set many chairs at it to ensure that more voices are heard and that collective amplification results in systemic, transformative change.
VALLAS: Later in this episode, we’ll hear my conversation with Rebecca Cokley and Judy Heumann and Mia Ives-Rublee about what Rebecca Cokley, our dear mutual friend, calls the ADA Generation: folks who, like Cokley, like Mia, like me, came of age in an era when the ADA, as well as other incredibly important disability civil rights laws and policies, were already in place. And in many ways, you don’t just represent the ADA Generation. You are yourself also part of the ADA Generation in Congress. How do you approach the incredibly important role that you’re playing as a leader of the ADA Generation and of the modern-day disability justice movement who’s inside the room where it happens, as some might put it?
PRESSLEY: Yeah. Well, certainly, I mean, the ADA, that was a sore victory. And here we find ourselves 31 years later. We celebrate the contributions of our non-binary siblings, of our foremothers, of our forefathers. We celebrate that moment and affirm that the fight still is not over. And often, many people don’t know this, but Dr. Martin Luther King Jr. and Coretta Scott King actually met in my district. They met in the Massachusetts 7th. They met in Boston. They met in a historic Black neighborhood called Roxbury at a church, a storefront church, called Twelfth Baptist. Coretta Scott was a student at the Boston Conservatory, and Dr. King was a student in Theology at the time. And so, I quote her often because I don’t think we give her enough oxygen. And she says that, “Freedom is never really won. You earn it, and you win it in every generation.” And so, that’s the work that we have to continue to do.
And my mother, may she rest in peace and power, made sure I knew early on in life that to be Black is a beautiful thing, something I should be proud of, but that I was being born into a struggle. And that she had an expectation that I would do my, play my part, assume my role in that struggle for justice and liberation, not only for Black folks, but for all marginalized people. And so, I think to my siblings in the disability justice movement, it’s very similar also being born into this shared struggle for our civil rights, humanity, and dignity.
I’ll just share a quick story. When I was doing some work around transit equity and justice on the Boston City Council, I asked someone from the Boston Center for Independent Living who was in a wheelchair, Diana, to ride the public transit with me because I wanted to have that empathy about what her experience is like every day. And I remember saying to her, “How long have you been doing this work?” And she said, “Well, I’m 25.” And I didn’t catch it at first, but I said, “Right.” Just as my mother told me, I was born into a struggle. So, she has been doing this work her entire life because she had no choice. And I cried during that tour because it was a demoralizing experience. Every elevator was broken. People seemed insensitive when we approached them, those that were supposed to be helping us. And what should’ve been a 30-minute ride to get to school, to get to work, to have a social life, to get to a medical appointment was a two-and-a-half-hour commute. And I cried. And I cried, and I felt ashamed that my siblings had been suffering in broad daylight, and we had turned a blind eye. That we had not seen their hurt, and we had not been intentional in building a movement that was inclusive and that saw their struggles as our own. And that was a marked shift for me. So, a long story, but an important inflection point in my own movement work.
VALLAS: Well, in the final moments that I have with you—and we’re gonna have to let you go to continue to do everything that the House is doing right now to try to make some of those elements of legislation that we were talking about before actually happened and to take the steps that all of you need to take to do the legislating—but in the final moment that I have with you, one of the truisms that I and many others have been saying for quite some time that finally is now really starting to have its moment to be socialized, to become something that the broader public is aware of in greater numbers, is that every issue is a disability issue. Every policy conversation is the disability policy conversation.
PRESSLEY: That’s right.
VALLAS: And that’s, of course, because with one in four Americans living with disabilities, we’re talking about an us, right, not a them. And you mentioned transportation. You’ve mentioned housing. I mean, even just in the course of our conversation that we’ve had today, you’ve already hit on several of the many intersections that don’t get nearly enough airtime. Yet you are one of the growing number—and I’m glad that it is a growing number at this point—but you are one of the growing number of members of Congress who is approaching your work that way and who’s approaching your agenda that you’re seeking to advance and how you work with movement in that way. Would you talk a little bit about, in our final couple of minutes, what advice you might have or any insights that you have now from the years that you have been in Congress, the insights that you now have around how to do that right and how Congress can make a point of doing that right as we look ahead to the next three-plus decades of this disability justice fight.
PRESSLEY: Well, again, it’s a mantra and a practice that I believe that the people closest to the pain should be the closest to the power driving and informing the policy making. I seek to do cooperative governing. I do not write a bill—and I’ve introduced 91 in three years—I do not co-sponsor a bill, I do not cast a vote on a bill without going to those that are in proximity and closest to the pain. And that is so that I can better understand the nuance, the complexity, the intersectionality, but it’s also so that I can harness the innovation. It’s also so that I have the data points and the storytelling to make me a more effective steward and advocate.
And policy is my love language. And the reason why policy is my love language is because when we talk about things like disability poverty and benefit cliffs, these things are not naturally occurring. These are hurts that have been inflicted through policy violence. How is it that SSI’s maximum monthly benefit in 2021 is just $794 per month? That won’t even cover rent and groceries in my district. That benefit is drastically below the poverty line. So, this is a…. The fact that this hasn’t been updated since the early ‘70s is just cruel and long overdue. So, policy is my love language. If we can legislate hurt and harm, inequity disparity, injustice, then we can legislate equity. We can legislate justice. We can legislate healing. And that’s the work that I seek to do every day in solidarity with movement and in partnership with those closest to the pain.
VALLAS: I can’t think of a better place to end this conversation or a better note to end it on. It’s all a political choice, it’s all a policy choice, and it always has been. And you are one of the voices in Congress and in our public arena helping to remind your colleagues of that, because some of them do often need that reminding.
I’ve been speaking with Congresswoman Ayanna Pressley. She represents Massachusetts 7th Congressional District, where until recently, my parents were actually your constituents! And they have a lot of love for you, too. So, I’m gonna get a lot of nerding out when I debrief with them about this conversation, on a personal note.
PRESSLEY: [laughs] Oh, that’s kind. I’m so grateful for the invitation to be with you. And I’d be remiss if I did not say, since September is Alopecia Awareness Month, Happy Alopecia Awareness Month to my fellow alopecians, of which we are 7 million strong.
VALLAS: I love it. I love it. And we are so grateful to you for your incredible leadership, for your voice, and for your partnership with the movement. Thank you from the bottom of my heart and many others of folks who I know are listening. It means a great deal to us to have you in Congress and doing the work that you do, the way that you do it. Congresswoman, thank you so much for making the time.
PRESSLEY: Thank you.
[upbeat music break]
VALLAS: Welcome back to Off-Kilter. I’m Rebecca Vallas. For part two of Off-Kilter’s special relaunch episode, I sat down with three amazing disabled women leaders, all of whom I’m proud to call dear friends, who’ve been at the forefront of the fight for disability justice for decades. Judy Heumann is an international disability rights activist who’s widely considered to be the godmother of the disability rights movement. Her historic activism was featured in the Oscar-nominated documentary Crip Camp, released last year. Rebecca Cokley, better known in disability circles just as Cokley, is a lifelong disability advocate who now serves as a program officer at the Ford Foundation, where she oversees the first U.S. disability rights portfolio at any major foundation in the U.S. And Mia Ives-Rublee leads the Disability Justice Initiative at the Center for American Progress in Washington, D.C., the first dedicated disability project at a U.S. think tank.
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VALLAS: Judy, Cokley, Mia, thank you so much for taking the time to join us for Off-Kilter’s relaunch with The Century Foundation. I have to say it is a total honor to get to sit down with each of you today. I only wish we were doing this in person, but this little virtual studio, I guess, will have to do.
JUDY HEUMANN: Great to be with you.
REBECCA COKLEY: Thank you so much, Val.
MIA IVES-RUBLEE: Super, super excited to be here.
VALLAS: There is so much that I know we want to talk about and probably way more than we’ll ever actually be able to squeeze into an hour. But before we dig in, I’d like to open it up to each of you to introduce yourselves briefly to our listeners and to say a few words about how you come to this work. And, Judy, let’s start with you.
HEUMANN: So, 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, [chuckles] 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.
VALLAS: We’re gonna get into lots of how you have changed the world, and immensely, in just a few minutes, but I wanna turn to Rebecca Cokley next. And just to say “Cokley” and “Vallas” is how we often refer to each other when we’re in the same orbit, because otherwise we’ve got a lot of Rebeccas. So, Cokley, let’s go to you next.
COKLEY: Thank you so much, Vallas. I grew up in the disability rights movement. I’m part of the 20 percent of people with disabilities that grow up in families with people like them, as opposed to the 80 percent who don’t. I have achondroplastic dwarfism, which is the most common form of dwarfism and which both of my parents have. And both of them were the only people in their families that carried the dwarfism gene. And so, I came along about, let’s see, I guess six years into their marriage. And my dad at the time was running a Center for Independent Living, and my mom went back to school to eventually be able to run a disabled student center at a community college. So, I joke that I literally sort of rode into the back, rode into the disability rights movement on the back of a mix of my dad’s wheelchair and my godmother, Ann Cupolo Freeman, who’s a dear friend of Judy’s chairs. And growing up in the Bay Area at the height of the AIDS epidemic in the early 1980s, my parents were very much focused on the notion that we have to show up for each other in movement spaces, across movement spaces, and then doing this work.
And as a fast forward 42 years, having served in presidential administrations and think tanks and worked for a member of Congress and Victoria’s Secret [chuckles] and now at the Ford Foundation, really being able to have this sort of longitudinal perspective of what we’ve done and really where we have to go. And seeing myself in a position of walking in the tread that, you know, the treaded path that Judy has worn down and now helping clear brush for Mia and those that come behind us.
VALLAS: And Mia, over to you next.
IVES-RUBLEE: Thank you so much. I’m so glad to be on here. I am a…. I live a lot of different intersections, but would describe myself as a disabled transracial adoptee who came from South Korea and was adopted into the U.S. And I have osteogenesis imperfecta, which is better known as brittle bone disease, and I grew up in a large family with a very vocal mother who was very, very adamant about making sure that I got the services that I needed. I had very vocal parents who were instrumental in making sure that I got the services that I needed. And I was super lucky to have come at a time and start growing up in a time when the ADA was already passed and that the IDEA was already passed, and the Rehab Act was already passed. And so, I guess I would fall under the ADA Generation, the term that Cokley coined.
And, you know, growing up, my mom was very adamant about making sure that I got the services that I needed. And I remember very clearly a couple of different experiences that really sort of fused a sense of that I had specific rights and that I needed the, that I deserved the same ability to be a part of my community and be able to get an education, get a job, be able to go off to college, etc. And so, I think that really built a lot of the building blocks that I needed to be able to start advocating on my own. And went off to college and was very active in the wheelchair sports community, which helped develop my sense of who I was and the fact that my disability was a part of who I was and that it wasn’t a negative thing in my life. And after that, I worked in a couple of different places, including Vocational Rehabilitation Services, and worked also doing research into mental health at UNC Chapel Hill. But really sort of was working locally and kind of accidentally stepped into the national stage when I got involved in the Women’s March. And that sort of launched my sort of work nationally on disability rights.
VALLAS: And my hope is that we’re gonna get to get into each of those different pieces of each of your paths. But it’s actually a really, really great segue into some of the history, which is really, I think, where we need to start before we get to present day and some of the current fights and the current agenda.
So, Judy, to kick us off, I’d like to bring you in to start us off with some of that key history, some of which the documentary Crip Camp, which I mentioned up top, got into and put on the silver screen for the first time. It wasn’t that long ago that there simply weren’t any civil rights protections at all for people with disabilities in the United States. And both Cokley and Mia are describing having grown up in a time when that was not the case for them as children, but it was for you. Paint a picture for us of what things looked like before we had the ADA, the Americans with Disabilities Act, before we had any other anti-discrimination laws on the books. You were growing up in East Flatbush, New York at the time. What was the picture for you and other Americans with disabilities at that time?
HEUMANN: So, we have to make sure that you say, “East Flatbush, Brooklyn,” because it just wasn’t any place in New York. But I’d like to pick up on something that Mia and Becca Cokley and I were saying, which is very relevant to the questions that you’ve asked. And that is the role of families. I think while I did not grow up in a time when there were any of the laws that Becca and Mia were discussing, the three of us have all talked about the importance of our parents. And I think that’s really in particular 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: And I would encourage anyone who’s listening and saying, man, I wanna hear more where this came from. I wanna know more about this history. I wanna know more about the legendary sit-ins that ended up bringing us Section 504 of the Rehabilitation Act, sit-ins that include such kind of dramatic moments as 50 people in wheelchairs shutting down one street that effectively shut an entire city down to try to get the attention of the media and the public and policymakers. There’s so much more where all of this came from. So, I would suggest—
HEUMANN: That was Disabled in Action. That was our group, yes.
VALLAS: There are so many stories that folks, I think, would just love to hear. And so, I would encourage anyone who wants to know a little more about this history and to be introduced to some of the amazing activism from that era to watch Crip Camp, that documentary that we’ve now referenced a few times, on Netflix. Easy to find. And it just it has so much there from you and many of the other leaders who were paving the way.
But with that as some of where the ADA and Section 504 came from, as well as the rise of the disability rights movement that started to bring us what is now kind of the status quo, Cokley, I’d like to bring you in next, because you identify as a member of what you call the ADA Generation, which as Mia mentioned before is a term that you coined for the generation of people with disabilities in the U.S. who grew up with the ADA in place. Talk a little bit about, if you would, the significance of coming of age as a member of the ADA Generation.
COKLEY: Thanks, Val. It’s Cokley. I think, so, when we talk about the ADA Generation, it’s not just about the ADA. It’s, to me, the thing, and a key part of the definition of what makes someone a member of the ADA Generation is that you’ve come of age at the time that the ADA was passed with IDEA, the Individuals with Disabilities Education Act preceding it. So, you’ve grown up mainstreamed or integrated into the K through 12 public school system, and you’ve started the beginning stages of transition planning. You’ve actually been asked for the first time, in many young people’s cases, “What do you wanna be when you grow up?” Which is a powerful thing because that question wasn’t a thing for people with disabilities. It was a thing disabled people talked to each other about late at night, like when you’d have sleepovers with your friends, or you’d be in the children’s ward of a hospital awaiting your latest surgery and talking to your friends after your parents had fallen asleep, or if your parents weren’t staying there, had gone home for the evening. And just the ability to answer that question, “What do you wanna be when you grow up,” and have the sort of intersection of K through 12 public education rights meet the rights embedded in the ADA—the right to public accommodations, the right to protections against discrimination in employment—that was radical.
And I remember, you know, and I think honestly, since then, probably the most important piece of legislation was the Affordable Care Act that allowed people insurance protections without facing discrimination as it related to preexisting conditions ‘cause it actually allowed you to be able to switch your jobs. But I remember as a kid keeping track of my godmother’s activism and looking for news stories about the protests that she and Judy and their contemporaries would get. And I remember riding on the back of her wheelchair to rallies in Berkeley and really, in so many ways, having my eyes opened up. Having the luxury of growing up around people with all different types of disabilities: intellectual/developmental disabilities, mental health disabilities.
I remember my mom had a student, when she was teaching at the College of San Mateo, who had CP, and her mom ran a daycare. And she worked at the daycare, and she taught all the kids to walk. And they used to call, the babies used to call her the Mother Duck, because she had a big old-school power chair. And the little kids would learn to walk by holding onto the back of her power chair, and then they would hold onto each other. And so, it was Ida and like five or six kids all learning to walk by touching the back of her power chair. And Ida talking about how important it was for her to live in the U.S. because she was from Turkey, and she would’ve been institutionalized. But her parents came to the States because they wanted their daughter to get an education. And the fact that she was able to move out and about in society and go on dates and go to parties in college. And like these were the folks that I was raised around.
And I always think in particular, I mean, my godmother is my favorite person on the face of the planet. And yes, Judy, even before you ask, I’m overdue for giving her a phone call. So, that’s a note to myself. But I remember as a young woman with a physical disability going to visit her, visit Annie in Berkeley, and she had like the coolest single woman’s apartment on the face of the planet. She had a piano and a giant poster. And I’m four feet tall, and Annie’s shorter than I am. And this poster easily was six feet tall of Phantom of the Opera, which she loved. And we would go to the co-op for grocery shopping. And we would go down Telegraph Avenue, and I would buy cool earrings from the hippies and listen to Bobo sing about losing his purple cow. And just for me, as a young woman with a disability, seeing that that could be my future was revolutionary. And even growing up in a family of people with the same disability like me, having that exposure a) to radicalism at a really young age, and b) seeing people do that work for a living really planted a seed in my mind, probably by the time that I was like five or six, that I needed to be in this work doing this. That there was, in fact, sort of a calling in that space.
VALLAS: And Cokley, I’m gonna stay with you for just a moment because it also feels like it would be incredibly helpful before we get too far along in this conversation to back up just a moment and talk about something that’s pretty fundamental, which is the question of who is part of the U.S. disability community, and what counts as a disability? How do we define that? The statistic that one in four Americans are people with disabilities gets thrown around, but help us understand a little bit about who we’re talking about here and why it’s so important how we define disability and who’s included.
COKLEY: This is Cokley again. I think the beautiful thing about the ADA is that it’s not a checklist. It talks about any mental, a person who has experienced a mental or physical impairment which impacts activities of daily living, a history, or a record of such impairment. And so, the beautiful thing about that is it can be different. Those activities of daily living can mean different things for different people. I’ve sat down with activists from other movements who’ve said things like, “Well, I have depression, but I don’t consider it a disability.” And they meant it really from sort of an internalized hierarchy of disability sense, meaning that they didn’t feel that because they didn’t need a mobility device or they didn’t use Braille or other accommodations, that their depression was not sort of on par with what they were witnessing in the disability rights movement.
And I remember saying to people like, “So, does it impact what you wear?” And this person looked at me and said, “I’ve been wearing”—and this is pre-pandemic, so I need to make that clarification because we’re in a different time now—but she had said, “I wear soft, I’ve worn nothing but soft pants for the last two weeks.” And I was like, “All right.” And I was like, “Does it impact what you eat?” And she said, “My significant other can tell when I’m depressed because I’ll order a five-pound bag of Gummy Bears, and I’ll munch off of it for a couple of weeks.” And I said, “Does it impact how you engage with your loved ones?” And she showed me her phone, and she had had about 25 missed calls from her mom and was like, “Hey, yeah. So, I’m not taking my mom’s calls right now because my mom’s calling me about finding a new therapist, and I haven’t found one yet.” And I really wanted to jump up and ring a bell, something saying, “We have a winner!” And I said, you know, “Those are all activities of daily life, and they impact you as an activist in the spaces that you inhabit. And so, yes, you are a part of the community.”
And I had a conversation today with someone that I have known for most of my entire life. And they said to me, “I just now realize that I have a learning disability.” And they’re like, “I’m in my 60s, and I’ve never talked about it.” And they’ve worked in tangentially connected to disability. But they’re like, “Would I be a poser? Would I be a faker? Would I be accepted if I came out now?” And what I said to him is what I say on Twitter anytime somebody discloses to me, which is, “Welcome to the community. We’ve been waiting for you. Our community is infinitely stronger and better and more prepared for the fights ahead because of your very presence.”
And I think for so many people with disabilities, even if they’re not, if they haven’t invited us in—to use a phrase that David Johns uses instead of coming out—if they haven’t invited us into their truth, you know, there is this feeling that disability continues to be something that’s shameful. And to instead welcome people and talk about it from the assets that it brings. And I wanna be really clear that that doesn’t mean that—and this sort of plays into the conversation around social model and medical model—that disability is all sunshine and dancing flowers from the ‘90s because it’s not. I think a lot of times people look at me as a Little Person and see my dwarfism as my most quote-unquote “disabling condition.” But they don’t realize that it’s my migraines that’ll keep me in bed for a day or days. And that if you offered me a magic wand, which I have been offered to cure my dwarfism, and I am very quick to decline, but if you told me that X procedure would wipe my migraines, I would cut in front of lines. I would play the Little Person card to cut in front of everybody to wipe my headaches out because of the impact that they have on my life.
But I do think it’s a very important conversation. It’s a powerful conversation. I mean, the definition of disability is big enough to include the kids in Flint, Michigan, who are 4,000 days out without clean drinking water. They’re big enough to include Black women with postpartum depression that don’t receive equitable post-maternal health care. And it’s big enough to include the 10 million people who are newly disabled as a result of long-haul COVID. And that’s a powerful thing.
VALLAS: And on a personal note, Cokley, you were the person who welcomed me into the community, and it was at a time where I didn’t really know how chronic illness fit in with a conversation about disability that, to my experience prior to you, had been much less inclusive and much more narrow in its parameters. But you helped me understand, no, “Living with gastroparesis, your body doesn’t digest food normally. It impacts your life in all these ways.” You welcomed me in. And so, everything you’re saying really, I think, lands for me in a very personal way as well.
I wanna switch gears a hair and fast forward us a little bit from some of the history we started with to present day. Here we are, three-plus decades out from the Americans with Disabilities Act, the ADA, as well as a ways out from several of the other landmark civil rights laws that you each have been mentioning. Yet, as I mentioned up top, as far as we’ve come, we still have quite a ways to go before the promise of each of these important pieces of civil rights legislation for people with disabilities is actually realized. And I’m gonna offer a few examples to sort of make the case here.
Particularly on the economic front, persistent and gaping disparities make incredibly clear, painfully clear one might say, that despite our progress as a nation, disability remains a cause as well as a consequence of poverty and economic insecurity. So, for example, pre-pandemic, disabled people were already twice as likely to live in poverty in the U.S., two to three times more likely to be unemployed, and are far more likely—and already were pre-pandemic—far more likely to have dropped out of the workforce altogether compared with people without disabilities. And according to some estimates, workers with disabilities earn just 63 cents or so on the dollar on average compared to their non-disabled counterparts. I’ve got words of Judy’s ringing in my ears as we kind of think about some of these realities of the status quo.
Judy, you once famously put it, “If I have to be thankful for an accessible bathroom, when am I ever going to be equal in the community?” So, with those examples as just a few snapshots of how much farther we have left to go more than three decades after the ADA, I’d love to hear from each of you what some of the key priorities and unfinished business are to break the link between disability and poverty, several of which are actually facing historic opportunities right now as part of the Build Back Better debate. And it’s hard not to lead off with Home and Community-Based Services, given that this is just such an incredibly important national conversation right now. Judy, I don’t know if you wanna kick off with that, given that in many ways, the push for Home and Community-Based Services investments right now at a historic scale really kind of feels like it harkens back to the work you opened us up by talking about.
HEUMANN: Yeah, but I wanna say one thing first, continuing on something you and Cokley were discussing. It is really important that people with invisible disabilities are learning more about why it is important for them, you, to really, on your own, become more inquisitive about the disability community. The media has to be much more open and appropriate in really allowing people to learn about both those of us with visible and invisible disabilities. But when we talk about 60 million disabled people in the U.S., one billion people around the world, a very large percentage of those people have invisible disabilities. So, I wanna say that to me, it’s one of the critical issues that you can’t legislate. We need more investments to be able to have the disability community be talking more to people with invisible disabilities, learning about why they’re afraid to disclose, recognizing that there’s a broader community out there for them. So, I need to say that.
Now, as far as Home and Community-Based Services are concerned, obviously, let’s first say what that means. So, I, as I mentioned a couple of times before, had polio, but I also use a motorized wheelchair. And I also am unable to go to the bathroom by myself, and I’m unable to get dressed and undressed by myself. And I’m unable to cook my meals and do the dishes and all those things. Home and Community-Based Services enable a person like myself to be able to hire someone who can help me do all these things, as well as also, if you need support at the worksite. And there are many different programs around the United States, which is part of the problem: many different Medicaid programs, many different ways of becoming eligible. But the bottom line is there is not enough money that’s been invested into enabling even people who are on Medicaid to be able to get the services they need. The Biden administration has really been pushing forward on putting $400 billion into Home and Community-Based Services, which is very important that we get rid of waiting lists, allow people not to have to move into nursing homes, get people out of nursing homes. Although Home and Community-Based Services is only a part of what’s needed in getting people out of nursing homes, because we also need people to be able to have affordable housing. And that’s a whole additional discussion.
But I think we’re all pushing for legislation that will enable people to get the supports they need to live in the community. And it can be very, very expensive to pay for personal assistance services, which is why they need to be able to get additional funding from the federal government so that workers are getting paid the wages that they deserve.
And for me, it goes beyond wages and benefits. I think one of the really critical problems is people do not respect and value people who are doing this type of work. It is seen as demeaning work. It is seen, even frequently by the people doing the work, as something that they can’t speak up about a lot. Helping somebody going to the bathroom, helping somebody get dressed and undressed, helping somebody eat, these are things that in the United States we don’t like to discuss. Everybody goes to the bathroom, but nobody wants to talk about people who need help going to the bathroom. And I think really, when we look at Home and Community-Based Services as a critical issue, we’ve got to get the average person to understand they someday may need this. They know people today that may need it. People who are unable to get it are winding up in segregated, restricted environments or in their homes. And other people are being, I call it indentured servitude when there is an expectation that a family member will provide unpaid personal assistance services for a child or a sibling or a spouse because they should, too, also be able to be paid for their work.
VALLAS: And the push right now for what would be literally, although the word does feel somewhat clichéd these days ‘cause it’s being used so much, but it would be an historic investment that President Biden has committed to in Home and Community-Based Services to finally end those years-long waiting lists that people can languish on while waiting for access to those kinds of personal care services that you’re describing. So, just an immense amount at stake right now in the context of that quote-unquote “Build Back Better” reconciliation package that is coming together on the Hill and being actively debated as we speak.
Mia, another huge push going on right now—
HEUMANN: And I wanna just say one thing. Sorry, Vallas.
HEUMANN: One sentence. And that is the money that’s currently being fought for, which I hope we win, at least a large portion of it, only covers people who are Medicaid-eligible. And that’s another issue that needs to be discussed.
VALLAS: I feel like we’re gonna need to do three episodes to get through everything we want to in this conversation with each of you ‘cause you’re so right. That’s just another incredibly important piece of the conversation that’s not really happening in the mainstream media digest. But putting a pin in that as something to definitely come back to and for folks to understand that it’s not everything that the disability community would want. It’s not the panacea, but yet would be an immense step forward in terms of access to Home and Community-Based Services.
Mia, I’d love to bring you in next, because another huge push that’s going on right now in the context of that same debate, the Build Back Better debate, relates to income assistance for disabled people who are unable to do substantial work. And that comes in the form of a debate around a long-forgotten part of our Social Security system that’s known as SSI or Supplemental Security Income. This is a program that you’ve been advocating to improve as well as have lived experience of relying on. Talk a little bit about how that is showing up in the current debate as well.
IVES-RUBLEE: Yeah, this is Mia. SSI was essential for me growing up. I remember as I was leaving high school and just sort of wondering, I unfortunately didn’t have the same great sort of people to look up to. When I was growing up, I didn’t have family, adults around me who were also disabled. So, I didn’t know what it would look like to have a job as a disabled person. And so, I knew that I had to go and get an education in order to even have a chance at getting employed, because there was no way that I was going to be able to work at the local ice cream shop or go work at a specific retail place just due to the fact that I was in a wheelchair, and I knew sort of the landscape of how people viewed me and my abilities. And so, being able to get SSI allowed me to have a chance at finding a career and getting to where I am today, and it helped to springboard me.
And the program, unfortunately, while it’s been so essential for so many low-income disabled people, it’s not enough, unfortunately. And as you were saying, it’s been languishing that, you know, the rates that people are receiving benefits is literally below the poverty line. And I remember when I was getting it back in the early-2000s or the mid-2000s, I was getting about 600, a little over $600 a month, and now individuals receive about $794. And that doesn’t even cover the average rent in any of the states across the country. And this is a program that is supposed to help keep people sort of, you know, off the streets, and it’s been like the main driver to keep disabled people out of poverty. But they also, unfortunately, because it’s been languishing for so long, has kept disabled people in poverty.
So, the talks right now are a couple of, a variety of different changes that individuals would like to see that would actually help expand the program, make sure that it actually keeps the promises that it was meant to keep, which was to get, to keep disabled people out of poverty. And that includes increasing the maximum payment to at least the poverty line. We’re not asking for a lot. It’s literally to get people at the poverty line. Being able to allow people to actually save some money so that maybe they can eventually get out of poverty is another big issue. I remember on SSI being so vigilant about my accounts, making sure that I didn’t go over the savings allotment. And so, right now, the current asset limit is $2,000 for an individual and $4,000 for a couple. And that means that an individual could lose their benefits if they go above that. And so many people, particularly now during the pandemic, during economic insecure times, they tell people to save. But how can you save if you’re not allowed to on this program that’s been essential, that helps individuals not only have an income, but also access Medicaid? Because single individuals who need health insurance don’t qualify for Medicaid unless they’re on SSI. And that’s just like an essential thing. And if they lose the SSI benefits, they are at risk of losing their Medicaid. So, that’s another area that’s very, very specific in that we would like to at least raise the asset limit, if not get rid of it.
And then another part of it that we, that’s in conversation, is getting rid of in-kind assistance provision. So, right now, individuals who are on the program, if they receive any assistance, whether it’s a bag of groceries, if it’s a couch to sleep on, can put an individual at risk for losing their current benefits. And so, we wanna try and get rid of that, in part because it restricts disabled people’s ability to get married, which a lot of people don’t understand is actually, we don’t have marriage equality because of specific programs that hinder us from being able to have a partner, have a family member that has income that is helping us.
VALLAS: And each of the things—
HEUMANN: In many ways, I think, what Mia is talking about is laws that theoretically are there to help you also keep people in poverty. And so, I think when we look at Home and Community-Based Services and the discussion that Mia was just having around other benefit programs, disabled people—not all disabled people, but some disabled people—will need additional funding because of accessibility and needing to be able to live near transportation or additional costs for housing or other kinds of supports. But given what Mia’s been explaining about the cliff and not being able to earn more than a certain amount of money and not being able to get married and on and on and on, these are things that, in fact, are part of what keeps disabled people in poverty.
VALLAS: I couldn’t agree more. And it’s also, it’s just such a cautionary tale of what happens when you create a well-intentioned program and then put it on the shelf and then forget about it, which is what Congress has done for almost the entire 50 years that the SSI program has existed. It was actually signed into law by President Nixon in 1972, right in the middle of all of the history that you were offering before, Judy, right, as this huge step forward. The intent behind the program of Congress at the time was actually to ensure that no disabled people and no seniors would have to live on sub-poverty-level incomes. But because the program has been left to wither, and even basic elements of it, as Mia was describing, haven’t been adjusted for inflation in some cases ever, and in some cases over the course of decades, the program instead ensures the opposite and actually traps people in deep and enduring poverty. So, I so appreciate, Mia, your describing all of the elements of what’s being talked about on the Hill right now, given that these kinds of issues are just so incredibly high stakes for the disability community and yet aren’t really getting all that much mainstream media coverage, given that this Build Back Better debate is mostly happening behind closed doors and not something that nearly enough people are able to get insight into the developments of as it progresses.
So, I’d like to switch gears just a little bit and actually bring each of you into this next piece of the conversation, which is that one of the things that the three of you have in common is that each of you has spent a significant portion of your careers bringing disability leadership and disability voices into the halls of power to make change from within as a counterpart to the kinds of outside activism and advocacy that, Judy, you were sharing with us before in terms of the sit-ins and so forth that were so incredibly important many decades ago and which have still been incredibly important as tactics that are still used today.
And Cokley, I wanna bring you in next on this point, because a big part of your work over the years has really been exactly what I’m describing: making change from within establishment structures, whether it’s government, whether it’s think tanks. Now you’re a leader within philanthropic circles. Talk a little bit about the story behind the Disability Justice Initiative, which you and I worked together to launch at the Center for American Progress, and Mia’s now picked up the baton and is now leading, but as really just such an example of that type of theory of change and which now, you’re really very much carrying on at the Ford Foundation.
COKLEY: Vallas, I would be remiss if we didn’t acknowledge all of the haters when we started or even proposed the idea of the Disability Justice Initiative at the Center for American Progress. When we proposed, I will never forget you giving me a call because I had left the National Council on Disability, and I took a summer off because I haven’t had a summer break since probably I was in high school at that point, ‘cause I usually worked most summers through college. And I was sitting at home watching Law and Order reruns and marathons and devouring the stacks of comic books that I had left unread for probably at least two to three years at that point. And you called me and said, “Hey, so, I know you’re thinking about what you wanna do next, and I know you have a couple of offers on the table. I just talked to Neera Tanden, and she’s down. And so, we want to invite you to come over to CAP and start as a consultant or start out as a contractor, and let’s build out a disability project over here.” And everyone we talked to told us it was going to be impossible. Everyone we talked to said, “The progressive movement is not ready for that yet.” Everybody we talked to said, “Nobody’s gonna fund that or fund two women running it.” And just the intense hater-ade that we frankly got from almost everyone we talked to about the idea, with few exceptions, actually. And I wanna call in Judy, because Judy was actually one of the people that was like, “Heck yeah, you need to do this.”
And getting over to CAP and being there and being part of the pushback to attack after attack after attack by the Trump administration and just the real power of being able to have access to tools and resources that, in a lot of spaces, the disability community doesn’t have access to. I remember feeling spoiled about the fact we had a radio station, and we had a green room, you know, green screen that you could use if you were doing interviews. Or we could video PSAs in the office. Having a big conference room or a public space for us to host events. Having somebody whose job it was, shout out to Constance Torian, to manage our event logistics. Because all of those things felt decadent in the disability space because we were so used to operating off of popsicle sticks and duct tape on the average day and being told to be thankful for the popsicle sticks and duct tape. And sometimes we were using used duct tape, it felt like. And really being able to build out, within a broader progressive organization, a resistance strategy and ensure that we were at the table, whether it be pushing back on Supreme Court nominations, such as Kavanaugh and Amy Coney Barrett, to working to ensure that conversations around paid family medical leave included people with disabilities, both as parents and also as people receiving care in those conversations.
And I think you and I sort of joked about what was going to come first as we headed into the 2020 election. And what kind of blew my mind is I remember walking through the airport. And I don’t remember where you were, Vallas, at the time, but I remember I was definitely walking through an airport. And my phone rang, and I answered it. And it was now-Vice President Harris’s campaign saying, “Hey, we’re really interested in the economic agenda for workers with disabilities that’s come out of the Disability Justice Initiative at CAP. We wanna make that the cornerstone of” then-Senator, now-Vice President, “Harris’s disability policy agenda.” And I remember just being, like stopping on the moving sidewalk and being like, “OK, sure! Let’s have this conversation.” And from there, it really blowing up.
And I think in so many ways, I thought that what was going to happen was we would build the relationships on the Hill, in the House, and the Senate, and then that would lead up to broader change across a field of presidential candidates. And it really was the opposite, I mean, from the call with Harris’s staff. And I would be remiss to not specifically shout out the leadership of Black women in the 2020 campaign who really held the door open for the disability community. Whether folks like Maya Rupert, who was campaign manager for Julián Castro, who managed to get the candidate to take multiple calls with the community to engage in Twitter chats, to develop a platform, to the tremendous work of Molly Doris-Pierce on Elizabeth Warren and then President Biden’s campaign, who worked to not just make sure that we had a seat at the table, but that our voices were heard throughout the campaign. We wouldn’t have had the wins we had if it wasn’t for them.
And following that, we’ve seen Congress follow suit. I remember getting phone calls from members’ offices saying, “We heard that you helped inform Senator Warren’s disability policy agenda. We don’t have a disability agenda for our office. And we have, you know, 30 percent of the residents of our district have disabilities. Can you come and sit down with us and help tell us what to do?” And I still pinch myself. I mean, I think of all the accomplishments that we’ve had over the years. 2020 will always have a very special place in my heart because we did what we were told was impossible, and we did it in a way that had never been done before. We did it bringing folks to the table, representing the various intersections of the disability community. We, in the middle of a pandemic, we got face time, even if it was virtual, with a number of candidates who really saw the disability community as core to their campaigns’ agenda and core to the kind of progress that they wanted to make in the country. And that was unprecedented.
VALLAS: And I’m just gonna jump in and say that part of what I think you’re referring to when you say “doing the undoable” was that 2020 ends up going down in history as an historic presidential campaign because it was the first campaign cycle where every single Democratic candidate—and we’d love to see the Republican candidates follow suit down the road—but where every single Democratic candidate released a disability plan, which was something that has never happened before in American presidential politics. So, that call that you got from then-Senator, now-Vice President, Harris’s team saying, “We wanna put out a disability plan,” that wasn’t just something that happened as a matter of course when people ran for president in the U.S. until 2020, when all of a sudden, the bar really got raised.
We’re gonna start running out of time, and I really wish that we had two hours with you guys instead of just one hour because there is so much more that I would love to get into. But as we start to wrap what has flown by as somehow an hour-long conversation that feels like about five minutes with you three amazing, amazing powerhouse ladies, I feel like the note to close on is that the COVID pandemic has brought the largest influx of new entrants into the disability community in modern history. And it feels like we would be remiss if we didn’t ask the question, what are the lessons that we should be taking away in this historic moment? And what is it that we need to see from policymakers to ensure that not just COVID long haulers, but the rest of the disability community who was already, as we’ve been discussing, facing an unacceptable status quo long before COVID was a household name, isn’t left behind as part of recovery efforts and as part of #BuildBackBetter.
Perhaps the most obvious COVID lesson that—and I put “COVID lesson” in large scare quotes—that anyone has been quote-unquote “learning” is what Judy referred to before around how dangerous institutions such as nursing homes and group housing places can be. This is something the disability community has been saying for years, long before COVID. But what are your hopes in this moment? And I’m gonna weave that together with a slightly more long-term, forward-looking question to give each of you a lightning round opportunity to close us out. And I’ll ask, what are your hopes for the future of the disability movement? And where do you hope that we’re gonna be in another 30 years, starting with this critical juncture following the COVID pandemic? And Mia, I’m gonna go to you with that question first.
IVES-RUBLEE: Yeah, thanks. I think just to try and sort of answer all your questions is that what COVID has shown particularly well is the cracks within our infrastructures and within our societies and how our social safety nets have large holes within them that leave out so many people and that really aren’t substantial enough to deal with a lot of the crises that we will likely have in the future with climate change, with the likelihood of more pandemics in the future. And I think that’s something that is very, very evident when we saw particularly people of color, disabled people of color, getting hit the hardest during this pandemic.
And the thing that gives me hope is seeing so much leadership and activism from disabled people of color and them finally getting a bit of a voice within the narrative around talking about disability. And I think of all the amazing folks that are on the ground doing the work. And given that we have gone from sort of a disability rights perspective to more of a disability justice perspective in understanding the intersections of people’s lives and that we don’t live just single-issue or single-identity lives. And I think that gives me a lot of hope to see that we do have a lot of work to do, but that there are a lot of amazing activists and advocates all across the board that are interested and passionate in doing the work.
VALLAS: And Judy, I’m gonna go to you next.
HEUMANN: Well, 30 years, I won’t be around anymore. But my hope is that we have learned about how disability is a normal part of life, that we as a community become more unified, and that the millions of people now who have disabilities see the value of becoming part of an ever-growing diverse community. I think also we have to recognize that the environment is an issue that we have to be talking about, not only because of how it causes disability, as we are seeing the adverse effects of our not taking care of our environment appropriately, but the reconstruction of things that are gonna have to be done as we see cities drowning and new construction needing to be done.
But I also, just for a minute, wanna get back to COVID. I think it’s very important that we look at polio. When I looked at how many survivors there were of polio in 1980, the number is between 10 and 20 million. Now, polio was eradicated in the United States in the early, I guess, 1960s, but was not eradicated and still is not completely eradicated around the world. So, I think we need to learn when we’re looking at long COVID, we need to bring that population of people who will be like you in many ways, Vallas: not seeing yourself as having a disability, not knowing about benefits programs that they may need, dropping out of the community as people in the HIV/AIDS community were originally doing because they didn’t know what was happening. We need to be reaching out to this community really rapidly. We need to make sure that our policies and practices and money is being put into helping make sure that this 10 million group of people, some of whom will have mild effect of long COVID, others who will not, and some who will change over time. But we really need to seriously look at this population as an example, not one that we will be dealing with separately, one we will be dealing with together and learning from what everybody has been saying today about benefit programs and other things like that.
VALLAS: And Cokley, you’re gonna get the last word.
COKLEY: [pause] Of course, this is the moment my children come marching in the doors.
HEUMANN: Love, love it! Yay!!!
VALLAS: Your children are always invited to this show, and you know that.
VALLAS: And they’ve been on it before, and they’ll be on it again. So, it’s kind of what I expected!
COKLEY: I was like, we made it to 6:27 without an intrusion from the Cokleyverse. You know, I think as I think about what moving forward looks like, it is how do we create a climate around policy and around policymakers where disability is not otherized anymore? And I think we’ve seen it slowly start to happen this last year, where sort of the next class of policymakers—folks like Representative Lamb, Representative Porter, Representative Pressley—have really been thoughtful about thinking about how every issue they tackle has an impact on the disability community. How it’s not just about ADA anniversary addresses and legal regulations as it relates to the height and width of ramps. But how does disability need to be addressed in bills tied to health equity and data collection? How does disability need to be connected as it relates to racial profiling or data around police violence? And that, to me, is a growing win.
I mean, I dream of a day where we don’t have to go up to the Hill and knock on doors and say, “Do you realize that poverty is a disability rights issue? And if you are addressing poverty in your legislation but you’re not explicitly talking about disability, then frankly, you’re not gonna be successful, and you’re going to be doing it wrong.” And that’s a conversation that I often have with non-disability grantees in philanthropy and also with other philanthropic organizations on a regular basis, which is, you can’t even dip your toes in funding work tied to inequality without being explicit in the inclusion of people with disabilities because it just won’t work. And so, I think when we think about the future, for me, it means how do we ensure that disability is included automatically across the board? And we’re starting to see it.
So, and I think one of the things that, I love our community, but one of the things that we don’t necessarily do well is honor when things are being done right. I think we’re very quick to point out when folks do things wrong and make them do the Cersei walk of shame, but much less likely to say, “Hey, this bill got introduced, and they didn’t have to include us, but they did. And that matters.” And that’s a win. And we should lift up the policymaker for doing the right thing. We should lift up the bill for being a model. And I do think that that is such a tremendous opportunity as we move forward, because Vallas, as you and I always say, and as many folks in the community have said over the last decades, if you’re not on the menu, or sorry, if you’re not at the table, you are, in fact on the menu.
VALLAS: And I can’t think of better words to end on. I appreciate all of you so much for joining us for this special launch episode, this relaunch episode of Off-Kilter now that we’ve moved over to The Century Foundation. And there is so much more that we could talk about. We could’ve done this is a two-parter, and I’m kicking myself that we didn’t do it that way. But I’ll just have to have each of you back on for us to continue this conversation down the road.
Rebecca Cokley is a lifelong disability advocate who currently serves as a program officer at the Ford Foundation, where she holds the first U.S. disability rights portfolio at a major foundation in the U.S. Mia Ives-Rublee is the director of the Disability Justice Initiative at the Center for American Progress, the first dedicated disability project of its kind at a U.S. think tank. And Judy Heumann is an internationally recognized disability rights advocate whose activism jumpstarted the disability rights movement over 40 years ago, paving the way for disability civil rights legislation that we’ve been talking about today like Section 504, like the ADA, and so much more. You can find lots more about many of the topics we’ve been discussing in our show notes, but we’re gonna have to leave it there. Judy, Cokley, and Mia, thank you so much for taking the time.
HEUMANN: Thank you for doing this.
IVES-RUBLEE: Thank you so much!
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VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abby Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts or wherever you get your pods. And for the superfans, you can find a full archive of all past episodes and show transcripts over at TCF.org/Off-Kilter. Got an idea for a topic you’d like to hear us unpack or a guest you’ve been wanting to hear on the show, send us a note at [email protected]. Or if social media is more your bag, give us a holler on Twitter @OffKilterShow. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. It really does help. Thanks again for listening and see you next week.