Philanthropy Often Overlooks Disability Rights. Can a Coalition of Major Funders Close the Gap?

Lack of disability equity is one of the many societal imbalances the pandemic is exacerbating. A new $10 million, five-year funding collaborative, the Disability Inclusion Fund (DIF), recently gave $210,000 in rapid-response grants to address the compounded challenges now faced by people with disabilities. The fund, housed at Borealis Philanthropy and backed by some of the largest foundations in the country, is also running a new round of giving to organizations working for disability inclusion, rights and justice (accepting applications through Sept. 16, 2020).

DIF is a project of the Presidents’ Council on Disability Inclusion in Philanthropy, which the presidents of the Ford and Robert Wood Johnson foundations created in 2019 by convening 16 leaders to advance disability inclusion in philanthropy. This endeavor aligns with a foundation-wide 2018 effort at Ford seeking to make its grantmaking and operations fully inclusive of people with disabilities, and to encourage similar strides in the sector.

Thirty years after the passage of the Americans With Disabilities Act (ADA), people with disabilities face a wide range of barriers and dangers, many of which have been worsened by COVID-19. Many people with mobility challenges or who rely on others for services are struggling to receive care while maintaining social distance. The potential for exclusionary medical rationing, lack of safety and PPP in group homes, and remote education access for students with disabilities are just a few other concerns.

“Throughout our lives, all of us will experience some form of disability, whether temporary or permanent,” says Ford President Darren Walker, via email interview. “Disability is a normal part of life, and what disabled people advocate for ultimately benefits everyone… [yet] disabled people continue to fight for equal access to healthcare, education and employment, to be included in policy discussions that directly impact them, and to live a life with opportunity and dignity.”

Donors to the council include the California Endowment, Chicago Community Trust, Open Society Foundations and Heinz Endowments, as well as the Andrew W. Mellon, Craig H. Neilsen, Doris Duke Charitable, John D. and Catherine T. MacArthur, Kresge, New York Women’s, NoVo, Ruderman Family, Weingart, and WITH Foundation. All of these grantmakers have supported programming for people with disabilities in the past. We’ve covered many endeavors in this realm, including programs focused on access to employment, financial empowerment, environmental justice and more. Another leader in this field is the Disability Rights Fund, which started as a project at the Tides Center and became an independent outfit in 2012.

Plenty of Room for Growth

As with most funding for a specific minority group, funding for people with disabilities—the largest minority in the world—is disproportionately low. According to a search of Foundation Center data carried out in August 2020, grants that served people with disabilities between 2008 and 2018 totaled about $22 billion, or about 3.5% of the $623 billion foundations gave out in that time frame. If the search is altered from populations served to funding subject areas that explicitly prioritize people with disabilities, the percentage is lower—about $4.7 billion in total, or 0.75% of foundation grants.

That reveals a considerable funding gap, given that one in four U.S. adults has a disability that impacts their major life activities. These can include learning, mental health, physical or sensory disabilities, chronic illness, and other conditions, which are unique to each individual and change over time.

A study released by the nonprofit RespectAbility in 2019 found less than 20% of nonprofits and funders are fully accessible to people with disabilities. Only about 24% of the organizations surveyed had a board member with a disability.

“[Grantmaking] simply cannot afford to overlook people with disabilities a moment longer,” says Dr. Angel Love Miles, healthcare/home and community based services policy analyst at Access Living of Metropolitan Chicago. She’s a disability rights scholar and activist who often focuses on social justice in regard to women and people of color with disabilities, and she’s a member of DIF’s participatory grantmaking committee.

Disability Funding as a Standard Lens and Social Justice Component

One of the council’s core tenets is that all areas of nonprofit and philanthropic spheres are disability-related, and that funding strategies that center and benefit disabled communities should be a standard practice, not a niche focus. “People with disabilities are a diverse group, who are a part of every community. There is no grantmaking topic that does not impact people with disabilities in some way,” Miles says.

This funding collaborative embraces a social, rather than medical, model of disabilities, framing them less as a problem to be fixed and more as a “natural part of the human experience.” The social model of disability places the onus for change and accommodation on society at large, not on those with disabilities.

A related and especially timely aspect of the Presidents’ Council’s philosophy is a focus on social and racial justice. Its long-term vision is for the funding sector to “seamlessly” integrate disability rights into a broad social agenda.

Walker considers disability inclusion to be just the “first step toward justice.” He says, “The rest of the work is addressing the root causes of injustice at the intersection of race, gender, class, age and sexuality. The compounding effects of racism, gender and economic inequality, and now, COVID-19, have given further urgency to listen to and learn from disabled people, particularly women, LGBT, Black, Indigenous and people of color.”

Miles also speaks of intersectionality, and she points out that more people of color and women have disabilities, and that people with disabilities have high rates of poverty.

Like the pandemic, the contemporary racial justice movement and the institutional racism it addresses intersect with disability rights. Sandra Bland, Eric Garner and Freddie Gray: all killed by police, all Black Americans with disabilities. From 2015 to 2020, 1,250 people shot and killed by police (22%) were known to have a mental illness (just one of many kinds of disabilities). More than half of Black people in the U.S. with disabilities will be arrested by the time they reach their late 20s, a 2017 study found.

The Presidents’ Council’s Goals

The council aims to create resources, change narratives and improve accessibility in philanthropy for disabled communities. It intends to increase the number of people working in philanthropy who identify as having a disability and track funding in disability-inclusive and -specific grantmaking.

Its main funding venture, the DIF, wants to strengthen the disability movement by building the power and capacity of representative organizations, and connecting disability justice groups to one another and to “mainstream” groups, among other objectives. Its values include cross-movement solidarity and a “radically” inclusive approach to center those most affected by intersecting identities.

Not surprisingly, this council aims to be participatory and accountable—the popular activist motto, “Nothing about us without us,” was first used in the disability justice movement. DIF uses a participatory grantmaking model driven by a committee of advocates, including Miles.

The Need for a Wider Funding Base

Mizrahi of RespectAbility says the Presidents’ Council is a great thing, and that she is “thrilled for it.” But, she adds, some funders use the existence of the group “as an excuse to do nothing.” According to Mizrahi, there are grantmakers who think that if major players are now taking up disability funding, the issue is sufficiently covered. Some funding rejections for disability organizations during the pandemic have been accompanied by a note directing groups to DIF.

Mizrahi says funders of all sizes can center disability in their work and ensure grantees are inclusive. “A funder does not have to give money to a disability group to help people with disabilities. They just have to ask their grantees if and how they are serving and including people with disabilities in their work.”

She says the DIF’s new RFP is a positive development, as is Ford’s commitment to “putting disability into all their regular grants.” She also says, “Now, to get the highest rating on GuideStar, a group needs to say if they have people with disabilities on their staff and board. This is a huge help.”

A Community of Learning

RespectAbility offers free online training on disability inclusion for nonprofits and foundations, which more than 700 leaders have completed. And the Presidents’ Council on Disability Inclusion in Philanthropy website, the Disability Philanthropy Forum, offers a variety of sector-specific resources, as well. It provides recommendations for disability-inclusive grantmaking strategies during the pandemic, such as flexibility, targeted rapid-response funding and accessible grant applications.

Walker cites challenges for the council, saying that “disability inclusion is new to philanthropy,” and that each member is on a different stage of their journey. He says these factors have made learning a core part of the council’s work. “The joy of this work comes from the learning process itself and the intrepid disabled leaders who teach and guide us, and shape our inclusion transformation.”

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