Not long after Darren Walker became president of the Ford Foundation in 2013, he set a bold social justice agenda for the grantmaker, challenging “inequality in all its forms.” At the time, Rebecca Cokley was executive director at the National Council on Disability.
“When he laid out that platform, it talked about racial justice; it talked about gender justice; it talked about LGBT justice; it talked about immigrant justice; it talked about economic justice. It was what we in the disability community call ‘A, B, D — all but disability,’” said Cokley. “And we, those of us in the community, pushed back very loudly, very vocally on social media.”
To their surprise, Walker listened.
“I give him so much credit for this,” said Cokley. “Because this is not how things typically go for people with disabilities. He invited us in. He engaged in thoughtful dialogue and conversation… Darren came to realize that both his own personal learning journey in the space, but also the institutional learning journey in the space, demonstrated that philanthropy has really neglected the disability community. It has acted as though we aren’t there. It has told us, quite literally in some places, to go beg the government for money or go ask the March of Dimes. It’s very much a Dickensian model of engagement with the disability community.”
After Walker’s consciousness-raising, he consulted with renowned disability activists like Judy Heumann, who featured prominently in the 2020 documentary, “Crip Camp,” and philanthropic leader Catherine Hyde Townsend, now a disability inclusion advisor at the Ford Foundation. Walker then made significant changes to foundation accommodations policies, and to provide state-of-the-art accessibility at Ford’s New York headquarters, on its website and during its events. Walker also conducted an audit of Ford’s hiring practices, and then launched an effort to recruit disabled job candidates.
Along with Rich Besser, president and CEO of the Robert Wood Johnson Foundation, Walker established the Presidents’ Council on Disability Inclusion and Philanthropy, a coalition of 17 other foundation presidents committed to increasing hiring of disabled philanthropy professionals and expanding grantmaking to disability organizations.
But beyond institutional reforms, Ford also set out to formalize disability rights in its grantmaking. That’s where Cokley came in.
In 2021, Walker hired Cokley, by then co-director of the Disability Justice Initiative at the Center for American Progress (CAP), and a three-time presidential appointee, to serve as Ford’s first-ever program officer of the foundation’s U.S. Disability Rights Program. In that capacity, Cokley, who now has a $10 million annual budget, is responsible for “strengthening the field, building a pipeline of diverse leadership, promoting disability pride, and mobilizing resources toward disability rights work.” She also functions as the foundation’s liaison to the Presidents’ Council for Disability Inclusion in Philanthropy.
Cokley’s portfolio is “the first of its kind at any major national philanthropic entity to center on the disability rights movement,” she said. Significantly, Ford’s focus on disabilities is not limited to grants made by Cokley’s program. Walker pledged to use a “disability lens” in every one of the foundation’s seven funding areas.
All of that makes Cokley perhaps the most prominent and powerful philanthropy professional working on the cause, although recruiting allies and building partnerships remain core to her work. Most recently, Ford, in partnership with The Century Foundation’s Disability Economic Justice Team, launched the Disability Economic Justice Collaborative, a unique coalition of two-dozen organizations “committed to breaking the persistent link between disability and poverty.”
Listening to those who aren’t listened to
Since arriving at Ford, Cokley has been doing a lot of listening. Knowing it was critical to have input from members of the disability community, she worked with Ford’s Office of Strategy and Learning to organize a series of listening and brainstorming sessions with disabled people from all sectors and their families and allies.
“We talked to people who use augmentative communication boards to talk, people who are often seen as unable to participate in these conversations. It was imperative for us to do this work right, that we sit down with people who aren’t listened to, that we sit down with the deaf blind community, that we sit down with the autistic community and with others to say, ‘If you were to design a funding strategy that could help our community, what would it look like?’ The resounding message was, we have to demolish this relationship between disability and poverty because it impacts everything,” said Cokley. “It impacts your healthcare and impacts your education. It impacts the choices you make, whether it be, can you get married? What college?”
To make her point, Cokley shared the story of a young disabled man from Chicago who interned for her years ago. In Chicago, the man was entitled to the 14 hours of daily home care he required to manage activities of daily living such as dressing, grooming, meal preparation, feeding and transportation. The man was accepted to Harvard Law School but had to turn down the opportunity because in Massachusetts, where Harvard is located, he was only entitled to six hours of homecare.
“What does it mean when your life’s choices are not determined by your opportunity, are not determined by your academic prowess, but by these arbitrary rules and laws and systems that have been in place since the New Deal, if not before?” Cokley asked. Such rules, laws and systems ordain that disabled people stay poor, she said.
Attaining economic justice, Cokley said, means raising or eliminating asset limits and other rules related to disability that limit recipients’ potential. People with disabilities, for example, can’t have over $2,000 in the bank without losing health insurance if they’re on Supplemental Security Income (SSI). People on SSI can’t get married, or may even need to get divorced, in order to keep their health care. An 80-year-old law intended to be temporary even allows employers to pay people with disabilities below federal minimum wage.
“Economic self-sufficiency, full participation, equality of opportunity, and independent living — you can’t achieve those as long as our people live in a state of codified poverty,” Cokley said.
New leaders, new narratives
She believes one way to realize the goal of economic justice for the 1 in 4 Americans with disabilities is through field-building — the development of disability community leaders. Cokley sees the establishment of trade associations as one way to do that.
“When you think about the power of those organizations for professional development, for exposure to mentors, we don’t have that. And so our folks don’t move up in the field.”
She said Ford plans to initiate several trade associations in the near future. Earlier this year, she oversaw the launch of the Disabled Journalist Association.
It is critical to change the narrative of disability, said Cokley, and media, she maintains, has a significant role to play in reshaping it. She pointed to Ford’s $150,000 grant to the New York Times funding a new disability journalism fellowship; its partnership with the Washington Post to present “Disability in America,” a live conversation about how disability drives innovation; and the work of the Inevitable Foundation, a Ford grantee, that supports disabled screenwriters.
Coakley also stressed the importance of viewing disability as it intersects with race. For example, Ford funded an organization called Crushing Colonialism, which is the first Native American-led disability justice organization, Cokley said.
Other recent grantees include the ACLU’s Disability Rights and Education Program; the Civil Rights and Disability Justice Clinic at New York Law School; CommunicationFIRST, which supports the rights of people who are non-verbal; and the Nexus Project, led by theorist, methodologist and empirical researcher Dr. Kate Caldwell at the University of Illinois, Chicago.
“I feel spoiled in this work because for so long, the fight in the disability community was, ‘We would really like to do X thing, but we don’t have the funding to do it,’” Cokley said. “To now be in a position where the funding isn’t the problem is truly exciting.”
“It can’t just be Ford”
Even so, Cokley is adamant about the need for other foundations to support disability organizations. “It’s going to take more than $10 million a year to uplift what was 64 million people prior to long COVID. It can’t just be Ford.”
Rebecca Vallas, a senior fellow at The Century Foundation (TCF), a progressive independent think tank supported by Ford, and Cokley’s former colleague at CAP agrees.
“It’s going to take a real consensus commitment across philanthropy that people with disabilities can no longer be sidelined in their grantmaking,” said Vallas.
Before coming to TCF, she and Cokley helped to create CAP’s Disability Justice Initiative — the first disability policy project at a U.S. think tank. Vallas recalled conversations she and Cokley had with funders during their days at CAP.
“We kept hearing, ‘Yeah, but we don’t fund disability.’ That was the direct quote we would hear all the time,” said Vallas. “And we would say, ‘OK, well, at the time it was 1 in 5 American adults; now it’s 1 in 4 American adults that live with disabilities.’ There just was a complete lack of awareness that every issue is a disability issue just because of the sheer scale of disability in this country and the number of people who live with disabilities. So we started to realize we needed to educate the philanthropic sector on why every issue is a disability issue and why economic policy is a disability issue.”
Vallas and Cokley’s realization led them to host a series of funder roundtables to educate philanthropists about how all their funding areas — education, healthcare, criminal justice, etc., needed to be viewed through a disability lens.
“One of the outgrowths of those roundtables was that the Ford Foundation decided to become a leader within philanthropic organizations,” said Vallas. “They became the anchor funder, the first funder at the Center for American Progress to anchor the Disability Justice Initiative.”
After Cokley left CAP for Ford and Vallas left CAP for TCF, Mia Ives-Rublee, disability activist and founder of the Women’s March Disability Caucus, took over CAP’s Disability Justice Initiative. Ives-Rublee believes education is a critical component of creating better disability policy and encouraging more funders to follow Ford’s lead. In fact, she created a toolkit on disability inclusion for the Ford Foundation that preceded Cokley’s hiring.
Ives-Rublee thinks that people remain ignorant about the need for disability policy and philanthropy because of “ableism and paternalism. Unfortunately, a lot of people don’t understand that disabled people have their own lives. A lot of times it’s assumed that they’re being taken care of by somebody else. And so they have a care provider who is making all their decisions and helping them access services. A lot of times, the focus was on the care providers, or it was focused on specific health issues and not thinking about, oh, disabled people actually go and get employed. Disabled people want to vote. Disabled people want a say in politics.”
Ives-Rublee has found that policy organizations and funders tend to “bundle disability” in with other program areas. “[They’ll say] ‘it kind of fits in with racism’; ‘It kind of fits in with women’s issues’; ‘it’s part of our healthcare package’; or ‘it’s part of our diversity and inclusion work,’” Ives-Rublee said.
“Most people view disability through a medical lens, not understanding that there’s tons of disabled people who don’t have healthcare needs. We need to understand and recommit to understanding that disability is more than just a medical issue. If we look through more of a social lens, we understand how disability impacts so many other issues. Just because you’ve solved the medical issue doesn’t mean that the individual isn’t going to face other issues within their community.”
Ives-Rublee said that kind of thinking frequently puts disability “on the back burner where it’s not fully addressed.”
In March 2022, TCF announced the formation of the Disability Economic Justice Collaborative, with Ford as a partner. The collaborative will convene approximately 25 disability organizations, Washington D.C.-based think tanks and research organizations that will “learn from each other, benefit from each other’s expertise, and work together to center the perspectives of disabled people in economic policymaking,” Vallas said.
“The collaborative is a very compelling opportunity and has the ability to push some really bold reforms,” said Cokley. “It is so exciting to be in a space where, if the table is not a table that everybody can come to, we can redesign it and build something better… and to use the privilege that I have in this moment, working at the Ford Foundation with all the bells and whistles that come with this job, to ensure that the field of social justice, for the first time, will truly be reflective of who is the most impacted, who is the most hurt, who is the least listened to. It is truly a phenomenal privilege.”