Ford Foundation’s Rebecca Cokley on the Infrastructure Bill and the State of the Disability Rights Movement

CARL SIGMOND, HOST: From KVMR Nevada City and in partnership with FREED, welcome to Disability Rap. I’m Carl Sigmond with Carly Pacheco.

Today on the show, we’re joined again by Rebecca Cokley. Disability Rap listeners may remember that we had Rebecca on the show one year ago, right before the November 2020 Presidential Election. At that time, Rebecca was a senior fellow at the Center for American Progress Action Fund. She is now a Program Officer in the President’s Office at the Ford Foundation, developing the US disability rights program strategy for the Foundation. She is the first person to hold this position.

CARLY PACHECO, HOST: Previously, Rebecca served as the executive director of the National Council on Disability, an independent agency charged with advising Congress and the White House on issues of national disability public policy. She also served in the Obama administration for four years, including time at the Department of Education and the Department of Health and Human Services, as well as a successful stint at the White House where she oversaw diversity and inclusion efforts. Rebecca got her feet wet in advocacy while working at the Institute for Educational Leadership, where she built a number of tools and resources designed to empower and educate youth with disabilities and their adult allies. Rebecca is a California native, growing up in the Bay Area during the heart of the Independent Living Movement.

SIGMOND: Rebecca Cokley, welcome back to Disability Rap. Last time we had you on, as we mentioned, it was right before the election, and we started by asking you: Where are we as a disability rights movement? Now it’s almost a year into the Biden Administration. Congress is very actively negotiating the Build Back Better package, which we will get into more in a bit, but I want to begin by asking you the same question: Where are we now as a movement, and how did we get here?

REBECCA COKLEY: Thank you so much, Carl. That is a great question. So, a year ago, when we last talked, there was a – you know… We were having a very deep conversation about what were we thinking was coming around the corner. It was the tail end of the last administration. When I think about where we are today, we are still unpacking the significant harms that were done to the disability community. We know that our community is always the canary in the coal mine. If they’re going to start experimenting on some group, if they’re going to implement a new radical policy idea, it’s going to start with disability.

And the last four years, we’ve seen just about everything. We saw deregulation of nursing home standards around infection controls, which really seeded the ground for a pandemic. We saw the institution or the initiation of a public charge on immigration, which prevented people with disabilities or people who had disabled people in their families from immigrating to the country and becoming citizens. We saw 72 pieces of guidance around special education pulled back. We saw that two-thirds of the folks that died from the coronavirus – at least two-thirds – were people from our community. We actually don’t even have the data still that we need to be able to tell us how widespread the impact was.

But at the same time, we’re in a different place right now. And I think it’s important to acknowledge that the feeling of impending doom is not quite so prevalent as it was a year ago. I think that we are starting to see what this new administration is really looking like, and given my perspective from having served in the Obama White House and running the National Council on Disability, I’m pleased so far. Is it perfect? No, but nobody was going to be able to come in with a clean slate and start hitting balls out of the park given the amount of damage that was done to our democracy.

And so, to watch the fact that we have really good people that have been brought on in the administration, both Emily Vorde in the Office of Public Engagement [and] Kim Naxted, who had served on the Hill with Patty Murray for a number of years. In the Domestic Policy Council, we’ve been asking for a Domestic Policy Council full-time position for multiple presidential administrations, and this is the first time that we have one. And she is incredibly qualified and so good at what she does. And it’s been really exciting to see.

We also are watching this administration actually release data on disability hiring, which previously we’ve never seen. I tried to get that data released during the Obama Administration and received significant pushback. And to actually see data released. I give a lot of props to my colleague Adam Raghavan in the Presidential Personnel Office, who texts me every time data is about ready to come out, and be like: Data’s coming! Are you excited? Are you excited? Like: Teaser – it’s coming. It’s good.

And it’s really exciting to see because you can’t see what you can’t measure, and to actually see that the administration is counting our folks means that it matters, means that someone’s being held accountable for the presence of the disability community. And the fact that, in addition to seeing some disability specific things being done, we’re also really seeing an attitude that disability needs to be weaved into all parts of the administration’s priorities. And being from the community that pioneered the term inclusion, that’s pretty dang exciting.

SIGMOND: Thank you, and I just want to dig in a bit more. Before we get into the substance of the bills that are being negotiated right now – and I should mention that we are recording this on October 25, so a lot could happen before this interview airs next week – but before we get into the policy conversation, homecare is part of the national conversation. Expanding Medicare is part of the national conversation. Home and Community Based Services are now being talked about on mainstream media. Wow! How did we get here?

COKLEY: We got here because of the blood, sweat, and tears of hundreds of disabled activists, some of whom aren’t still alive with us today, who’ve given their lives, put their bodies on the line to make home and community-based services a priority. This is not a new fight for the disability community. This has been the fight since we started being liberated from institution and congregate settings decades ago. The fight for home and community-based services is the most basic of fights for the disability community. And while people are waking up to it, and while other parties are getting a lot of attention around this fight, I will be damned if people forget that we pioneered this fight. This fight originated in the disability community because we demanded the basic right to live in our homes and our communities and not be segregated away, not be hidden in basements, not be locked up in hospitals against our will. This is our fight because this is our lives.

And I think that that’s really important to note: I think we also got here because of coming off of the 2020 election and the unprecedented level of political engagement that we saw the disability community subjected to by the multitude of candidates that were running. Carl, you and I talked about this a year ago. The fact that we had candidates actively courting the disability community, which had never happened before. It tends to be a unique opportunity when you start the field with 25 candidates running for president. Everyone was looking for their own constituency that hadn’t been tapped yet, that hadn’t gotten to the point of being jaded about being asked about politics. And I think it really was lightning in a bottle for the disability community.

And the 2020 election – you know… I also think, given the fact that two-thirds of the folks that have died because of coronavirus come from our community and specifically coming from congregate settings… I mean, I would love to see man on the street interviews of baby boomers and stop them and be like: Hi, given the fact that the coronavirus exploded in nursing homes and congregate settings, what’s your retirement plan? Are you going into a nursing home? Because I would bet the majority of non-disabled people are terrified of the notion of going into a nursing home now. And so, there’s a little bit of vanity at play, too. People don’t want to end up in those places. We’ve always said they sucked, but it’s nice that non-disabled people are finally listening to us after tens of millions of people have died.

But I also do think that the fact that the coronavirus has resulted in at least 10 million newly disabled people, because of long-haul Covid, has people that are key stakeholders or policy makers really looking to the disability community for answers, where previously we wouldn’t have frankly even been able to access the rooms or the tables that the conversations are happening.

PACHECO: Thanks, Rebecca. So, thinking about this sort of new opportunity [with] Build Back Better on the table [and] all of this unprecedented funding for home and community-based services, what would it mean for our nation? What does that look like? What does that mean for our future and what does it say about the strength of our movement?

COKLEY: You know, to me, coming from the Ford Foundation, where a key focus of our grant making is economic justice right now, this is economic. This is long-awaited economic justice for the disability community. We’re talking about clearing state level waiting lists. We’re talking about the fact that families aren’t going to have to have the conversation with their children that their dad has to go live in a nursing home because he can’t get the hours of home care that he needs.

And this is huge, but I think that it’s also really important to look at this among the broader set of proposals, too. So, we have HCBS, which is talking about being funded in unprecedented levels. The president proposed $400 billion. We’re still waiting to see where that lands in Congress. We were also talking about significant reforms to Supplemental Security Income inside of the reconciliation package because you can actually make tweaks to SSI inside of a budget reconciliation.

And things that are being proposed are things that we’ve asked for for a long time, including but not limited to the elimination of asset limits or extreme raising of asset limits. We keep talking about the elimination of subminimum wage. It does no good to get rid of subminimum wage if you can’t have more than two thousand dollars in your checking account. Let’s be real. You have to do it together. It has to be a package. And so, seeing the significant raising and in some cases elimination of asset limits for certain means tested programs is a big deal.

Another piece that I think really matters is the removal of the in-kind support rule, which is also being proposed as part of reconciliation. If you’re disabled and you have to live on your mom’s couch in the basement because you can’t afford a home, in certain states that counts against your assets. So, your parents actually have to push you out, make you homeless, in order for you to get your health care. Like, that’s blackmail. That should be illegal, and yet it isn’t. And so, I think that the HCBS piece is really important. It really matters. It’s a huge deal.

But if you look at the broader package, if you’re talking about increased funding for HCBS, you’re talking about SSI reform. You’re talking about continued conversations around the elimination of subminimum wage. If that’s going to be in there or not. All of these pieces matter and they should really be done in conjunction, in a package. Otherwise, we’re just going to end up in another situation where we have these systems that should all be coordinated really running at each other with contradicting, metrics contradicting definitions, contradicting qualifications. And we’re not going to get the kind of change that we need.

PACHECO: So, Rebecca. Your new role at the Ford Foundation. They have a huge new disability priority platform that they’re rolling out under your leadership. You talked about really economic justice being kind of the keystone of that. Could you share with us a little bit about what’s going on at Ford and some of the work you guys are doing?

COKLEY: I would love to share with you all about this. It is so unbelievably exciting. So, I came to the Ford Foundation in January after being at the Center for American Progress for the previous several years, and to actually be at a place where we can no longer say in this moment – you know, I’m sure we can always say this – but the lack of funding is the biggest problem to getting really good things done. And that’s not saying that our funding is the end-all be-all of all things. But to actually work for a funder who says – there is no justice without disability, and holistically as a field, philanthropy has to spend some time examining both our personal biases against disability and our institutional biases against disability – is absolutely incredible.

So, one of the first things we did, because we really do want to live the mantra of “nothing about us, without us.” And let’s acknowledge where that came from, because that’s not a US-based mantra. That mantra came from South Africa and from disabled advocates in South Africa that were fighting against apartheid. I think it’s been sanitized. People have thrown white out on it. It has been so often frequently adopted by US activists that we forget the people that were saying that were being subjected to apartheid, abject segregation, physical, social, economic, and they were at the nexus of race and disability at a time that it was horrific to be African with a disability living in South Africa at that point in time. And that’s really important for us to not forget the legacy of that phrasing.

But to be in a position where for the first several months, my job was just reading, and thinking, and getting to write, and sitting there and saying: You know, if this were a magic wand that we could start doing some really good things with, where do we start? What does our focus need to be? And so, we started by listening to disabled folks. We hosted a series of sort of disability community strategy sessions, pulling in people with disabilities from all over the country, with all different types of expertise: Disabled folks that work in disability organizations, disabled folks that got pissed off at disability organizations and left and went and worked in progressive organizations. We pulled in family members. We pulled in people who started family organizations because, we know that so much of the roots of the disability movement really started with parents and families before we were able to start up our own organizations. And [we] just listened to people and said: What’s worked? What hasn’t worked? What are things we should be focused on? Where should we not be focused on?

And it was really interesting to hear what came up. Obviously, everything is messed up, which is not going to be a surprise to either of you, Carl and Carly. Like, it’s all screwed. But to actually say: What if we were to make some targeted investments? Could we have a real impact?

And the focus of this fund is US-based. And so, the number of times I’ve had folks call and be like: Hey, I want you to pay for this event in Japan. Or: Hey, can we get money to do x, y, and z over in Europe? And I’ve had to sit there and say: Hey, no, this is a US-based fund. It’s the first fund of its kind. It’s based in the president’s office. It’s $10 million a year. And that sounds like so much money because our community has never gotten any money from philanthropy really until the last probably five years. And to Ford’s credit, really because of Ford and our CEO Darren Walker’s commitment to this work. And in addition to obviously this fund… This is one pool, but across Ford’s 10 plus lines of work, there still remains a commitment in each of those lines of work to continue funding disability as it relates to the themes that they work on. So, this is not being done as a substitute for its current existing grant making.

And I said at the top of the hour that our real focus is going to be on economic justice and field building. And the reality is, we don’t have a well-funded field, and part of it is because of a lack of economic justice. If you can’t have more than two thousand dollars in a checking account, you can’t open up a non-profit. We know that one-third of GoFundMes – one-third of all GoFundMes – are helmed by people with disabilities or families of a person with a disability to fundraise for something that is an uninsured expense. And it could be a new wheelchair, because let’s be real. Medicaid will only give you a wheelchair that’ll work if you need one in your home, and you have to wait five plus years or so to get a new one. So, what does it say when you’re a teenager and the wheelchair you’re given at 11 doesn’t work for you at 14, because you’ve had two growth spurts in between now and then? Sorry, you still have to sit in an 11 year old wheelchair with ponies and puppies on the side of it. Really?

And so, really getting at not just throwing money at fundraisers, which is not what we’re doing. We’re not funding individual charity. But what we are doing is saying: What are the systemic issues that have caused this set of circumstances for the disability community, and how can we fund the kind of change that needs to happen? And in doing so, also how do we build the field of US-based disability rights and justice activists and advocates to drive the kind of change we need to see? And so, it really is twofold.

In addition, there’s a third piece of our strategy that’s focused on narrative change. How do we change how people talk about disability? How do we change how disability is portrayed in the media? How do we build off the gains of 2020 to really change / flip the script on what it means to be disabled in this country? And what are the capabilities of the disability community?

And then, the last piece is continuing to think about how we drive this change, not just at Ford, but across the field of philanthropy, because it can’t just be Ford. We can’t fund everything. And as I said, my $10 million is groundbreaking for the disability community, but there are foundations that give out single grants in the millions. We’re not there yet in terms of this work, partially because our organizations don’t have the capacity to take on a grant that big, but also because if I was giving away million-dollar grants we’d have 10 grants and no field. And so, really being thoughtful about this work and how do we help spread it and grow it across the field of philanthropy.

SIGMOND: Following up on what you’re doing at Ford and where you’re going there, where do you see and hope our movement is going as a whole?

COKLEY: I would like to see the disability rights and justice movements – specifically disability rights, because I think disability justice is there – think really strategically about who counts as part of the community. I think it’s one of the most powerful gifts that we’ve had from any of our ancestors – and I give a lot of credit to Congressman Major Owens, who really spearheaded this in the drafting of the ADA – is how broad the definition of disability [is]. And we have grantees that are really excited to start really thinking about how we use that definition to welcome in the next generation of advocates and what that next generation looks like.

For example, we have colleagues in Chicago at Access Living. Candice Coleman and a bunch of other young people are helping organize survivors of gun violence, because nobody has organized people who have lived through gun violence and have acquired disabilities as a result of that as part of the core constituency of the disability rights community. I think that’s hugely powerful.

We’re funding #MEAction, which is an organization that works on issues of myalgic encephalomyelitis, otherwise more casually referred to often – incorrectly – as chronic fatigue syndrome, to help build up the advocacy of that community, and specifically their targeted work supporting and mentoring the growing number of people with long-haul Covid, because the symptoms very much mirror each other. To me, it’s imperative that we don’t waste time saying those people don’t count as part of our community, or as I’ve heard people say to me before: Well, it’s on them to find the disability community. It’s not our job to knock on doors and say: Hi, I’m from the disability community. Like, please come join us. And I feel like that’s a really privileged perspective to have. And that we have an opportunity to say: There are things that you are entitled to by law. We’ve been doing this for a really long time. Can we help make this transition easier?

I wake up every day excited to go to work, because I mean, how can you not be excited to pick up the phone and call people and say: Your work is really amazing. I know it’s gone unsupported for forever. I know your organization runs bake sales to support x program or has an auction at its annual conference to support this project that’s really important. Can I fund you? And can I fund you well and support your work so you can take some time to sit and think about it, so you can think about, like, what could we do differently? What could we do if funding wasn’t the issue? Could we bring on staff? Could we do a team retreat? Could we actually take some time to do strategic planning?

And it’s all of those things that are really exciting to me. And honestly, I look forward to coming back next year, because next year, I can even talk about more cool things we’re doing that are still in sort of the idea phase right now as we start to head into the end of 2021 and beginning to think about year two and what 2022’s funding is going to look like.

PACHECO: That was Rebecca Cokley of the Ford Foundation. To listen to our interview with Rebecca from one year ago, right before the 2020 Presidential Election, go to FREED.org/disabilityrap.

And that does it for this show, which was produced and edited by Carl Sigmond. Special thanks to Courtney Williams for her support. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap.