Real Equity Means Including People With Disabilities in Philanthropy

Eric Petersen for The Chronicle

This year, the United States will celebrate 29 years of civil-rights progress under the Americans With Disabilities Act. And yet the more than 56 million Americans with physical, sensory, mental, cognitive, or intellectual disabilities — as well as those living with a chronic illness — continue to experience deep and persistent inequality.

According to the U.S. Census and the Labor Department, people with disabilities are half as likely to have a bachelor’s degree and twice as likely to be unemployed. They are also twice as likely not to receive medical care due to costs, according to the Centers for Disease Control and Prevention, and four times as likely to have a cardiovascular disease.

How have most philanthropies taken on the inequities behind these shocking statistics? We haven’t. In fact, both of our foundations have recently faced criticism from disability-rights groups — and rightly so — for being a part of the problem: Too long, philanthropy has operated under the premise that “disability is a worthy cause, but it isn’t ours.” But relegating disability-related issues to a niche grant-making area or, worse, ignoring people with disabilities completely is no longer acceptable in philanthropy.

The facts are clear: Living with a disability means facing yet another form of inequality that intersects with everything philanthropies do, including issues as disparate as poverty alleviation, voting rights, criminal justice, and access to quality health care. Issues of disability affect people of every race, class, and gender identity, which means that ignoring those issues only compounds structural racism and class and gender discrimination.

True Equity

The good news is, many of the challenges people with disabilities face are the result of structural policies and practices that we can change. That’s why we are proud to be co-chairs of the new Presidents’ Council on Disability Inclusion in Philanthropy. As part of our leadership of this group, and as leaders of the Ford Foundation and the Robert Wood Johnson Foundation, we have joined with 13 other foundation executives to champion inclusion of people with disabilities in our own institutions and within all of philanthropy.

As a first step, council members have collectively agreed to commit $10 million over five years to this work — and to ensure that it’s guided by activists who have been at the forefront of the disability movement. We know that there’s much more to do and that our commitment must be thoughtful and long term.

To be sure, the members of this group are at different stages of the journey toward true inclusion, but we’re united in the knowledge that we can and must do better. We believe philanthropy can help spur a cultural shift, going beyond compliance and access and aiming squarely at true equity in collaboration with movement leaders. We welcome our colleagues across philanthropy to join us by taking a closer look at how their own foundations can be more open to people with disabilities in both their grant making and their operations. Subscribing to the Disability and Philanthropy Forum, an online hub of resources and information on disability inclusion, is a good place to start.

Listening and Responding

As leaders of foundations ourselves, we know that identifying the intersections between disability rights and our existing grant-making programs may be difficult. For one thing, many of us are not well informed on the issues or don’t have staff members who are disabled.

And over all, there is not nearly enough conversation about the full spectrum of disability (after all, some disabilities are invisible) or the stigma that self-identifying as disabled may bring, particularly at work. But lack of expertise does not excuse us from listening and responding to the experiences of people with disabilities who are among the people our grants seek to serve and who should be involved in grant-making decisions.

At its core, this focus on disability is not a departure from our work, even if some of us have further to go than others; it’s an extension of it. Disability rights are analogous to, and intertwined with, many of the movements philanthropy has long supported. Philanthropy is already focusing on better ways to collaborate with people of color, indigenous people, undocumented families, and others with diverse experiences. People with disabilities are often part of those groups and in any case are no different from others whose lives we hope to improve with our grant making.

As we commit to full inclusion of people with disabilities in our work, we need also take the time to appreciate the dynamic, resilient activism of the disability movement. The history and culture of disability activists and the pride such leaders take in their work are extraordinary, and every philanthropic organization can learn from their example. We must work together to learn about their priorities, connect those organizations to new funding, and use our own voices to push for changes in philanthropy to be more open to people with disabilities.

Together we can help create a world where all individuals, regardless of who they are or what challenges they face, have a fair and just opportunity to be as healthy and free as possible. But we’ll never get there without first taking a cue from the disability movement’s mantra, “Nothing about us without us.”

Rich Besser heads the Robert Wood Johnson Foundation and Darren Walker leads the Ford Foundation.