by Megan E. Doherty
Although disability is a natural part of the human experience, our cultures and institutions—including philanthropy—have long stigmatized and excluded the disability community. But with leadership from disabled advocates, philanthropy is beginning to recognize that disability is a normal part of human diversity, and we cannot hope to achieve social justice without fully incorporating disability into our day-to-day operations and grantmaking.
“Too often, disability is considered a niche funding area, and people with disabilities are viewed as being in need of ‘fixing’ or pity,” said Emily Harris, Executive Director of the Disability & Philanthropy Forum. The Forum is bringing together foundations and philanthropy-serving organizations to shift from this disempowering charity-based lens to one that centers the perspectives and experiences of disabled people.
Offering a Roadmap
In 2021, the Forum announced the Disability Inclusion Pledge, now signed by more than 60 philanthropic organizations. “We developed the Pledge because we learned from philanthropic organizations that they want to commit to disability inclusion, but so often are not sure where to begin,” Harris shared. The first of its kind in philanthropy, the Pledge offers a roadmap for beginning to implement systemic change within foundations and philanthropy-serving organizations to combat ableism.
“When we center disability, it becomes clear that the history and lineage of the charity model has been problematic,” said Kiyomi Fujikawa, co-director of Third Wave Fund.
As a Pledge signatory, Third Wave Fund is signaling their commitment to integrating a disability lens across their work, and challenging their peers to join in the effort to change philanthropy as a whole. The Pledge highlights eight “action areas” that offer concrete ways funders can go beyond the bare minimum of what is legally required, in favor of policies and practices that proactively uplift disability as an essential component of advancing equity.
“Signing the Pledge is a vital starting point for philanthropy to hold ourselves accountable in our work towards inclusion and equity for all,” Harris said.
Philanthropy Urgently Needs Disability Inclusion
“We are painfully aware that the promise of justice in our country has not been met,” said Lisa Schroeder, president and CEO of Pittsburgh Foundation, which signed the Pledge in April 2021.
Sixty-one million Americans are disabled, and more than a quarter live in poverty. Disability intersects with all identities and forms of oppression, and disabled people are disproportionately impacted by public health and economic crises, racial injustice, and rollbacks to civil rights. To achieve social justice, disability inclusion cannot be an afterthought; rather, it must be central to the work of all philanthropic organizations.
And yet, in 2018, grants supporting people with disabilities accounted for only 2.4 percent of funding given by the largest U.S. foundations. Further, data from the Human Rights Funders Network and Candid found a 14 percent decline in international human rights funding for disabled people between 2017 and 2018, despite an overall 13 percent increase in total dollars for global human rights over the same time period.
“If you look at dollars directed to the disability community, it’s not so impressive,” said Judy Belk, president and CEO of California Wellness, a signatory of the Pledge. “Disability has been invisible within the philanthropic sector. It’s almost as if people talk about social justice and racial justice, and then disability comes later,” she said.
“Unless and until we adjust the way that societies, and philanthropy in particular, has marginalized the disability community, we will fail to meet our goals of equity and inclusion,” said John Palfrey, president of the John D. and Catherine T. MacArthur Foundation.
MacArthur Foundation has had a long-standing policy against signing pledges, but they made a rare exception for this one. “In the last couple years, it’s become more clear that collective action is important,” Palfrey said. “Some of this was to bind ourselves to try to do better in an area where I thought we really had much more room to grow.”
Filling the Disability Knowledge Gap
Presently, it’s hard for the philanthropic sector to determine where the stress-points are, because the data on disability and philanthropy is sparse. The Disability & Philanthropy Forum hopes to help fill this knowledge gap. Upon signing the Pledge, each signatory is asked to complete a survey to establish a baseline and track progress for both internal operations and external funding practices. Ninety percent of the initial signatories responded to the survey at the end of 2021.
Encouragingly, more than a quarter of survey respondents shared that they already had written guidance in place for including people with disabilities in community engagement and advisory roles, while more than half indicated they are exploring the possibility of instituting such guidance. Yet more than 40 percent have no current plans to increase the share of their annual grantmaking that focuses on or incorporates people with disabilities, and only one-third currently track disability metrics. And while half of respondents said they include accommodations language in event invitations, only 20 percent were leveraging their event sponsorships to increase accessibility and inclusion.
“There’s much work left to do, but all progress is necessary progress, whatever part of the journey you’re on,” said Emily Ladau, Digital Content and Community Manager of the Disability & Philanthropy Forum and author of Demystifying Disability: What to Know, What to Say, and How to be an Ally. Signing the Disability Inclusion Pledge is only the beginning of a learning process that centers the perspectives of disabled people.
The Forum provides information and resources to support organizations in their disability inclusion journeys. Its articles and videos about disability history and culture, accessibility best-practices, and starting-points for inclusive grantmaking make it easy to take action. By sharing insights from fellow Pledge signatories, it also provides examples of what disability inclusion looks like and a sense of shared purpose.
“We could do this work and feel like maybe we’re doing it in a silo,” said Third Wave’s Fujikawa. “But I can see that my colleagues at other organizations are also a part of this.”
Disability Inclusion in Action
The Disability Inclusion Pledge can help all foundations, whether they are learning about disability inclusion for the first time, or looking to implement ideas that have long been percolating. It can both provide new action-items and resources, as well as solidify and augment prior resolve.
Signing the Pledge helped Third Wave Fund codify practices already in place, or that they were thinking about. “We’re constantly evaluating our own internal practices and our grantmaking practices, such as making sure there are more accessible ways to apply for grants—whether that’s by taking applications through a written form, by video, or over the phone,” said fund co-director Ana Conner. They’re currently rebuilding their website to make sure it is fully compliant with the latest accessibility standards, the Web Content Accessibility Guidelines (WCAG), and they’re planning to launch a long-planned fund for disability justice later this year.
In 2020, the Pittsburgh Foundation joined the Disability and Access Initiative, a regional effort created by two other Pittsburgh-based Pledge signatories, FISA Foundation and The Heinz Endowments. Since then, they revised the demographic section of their grant application to include disability-specific questions. They further examined their organizational and grantmaking practices and worked with FISA to identify organizations that serve the disability community. This resulted in an additional 14 grants totaling $788,000 that directly benefit people with disabilities in the arts, education, workforce, and criminal justice fields.
“We all feel this huge sense of humility,” noted Schroeder.
On the West Coast, California Wellness has continued to improve their website by ensuring that font, color, and contrast are legible for screen readers and providing alt text and a caption for each photo. To build internal capacity, they are working with The California Endowment and Weingart Foundation—two other Pledge signatories—to better understand the disability justice landscape in California. Belk has identified disability as a priority for her president’s discretionary fund, and will use it to support disability-inclusive efforts around the state. As a member of the Presidents’ Council on Disability Inclusion in Philanthropy, California Wellness contributed $800,000 over four years from their Advancing Wellness budget to the Disability Inclusion Fund at Borealis Philanthropy.
Since signing the Pledge, MacArthur Foundation has expanded upon its prior work increasing the accessibility of its website. They’re planning an audit of their grantmaking system and will also improve how they collect grantee demographic data to include disability-specific information. “Disability inclusion has been overlooked by most foundations. I think most of us are trying to catch up fast,” said Palfrey.
Shifting the Power
Many of the signatories have noted that true disability inclusion cannot come without including disabled people in positions of real power within foundations themselves.
“The Pledge makes clear the importance of including disabled folks in both grantmaking and also in positions of leadership and decision-making power within our institutions,” Third Wave’s Conner said, noting their staff is majority-disabled or chronically ill.
Belk agrees. “Who makes decisions is important. Philanthropy has an uneven record of having members of the disability community on our governing boards and in staff positions,” she said. “Historically, there has not been that type of commitment in hiring throughout the sector, and philanthropy needs to change that.”
MacArthur is poised to start making those changes. In addition to hosting a disability training for an upcoming Board meeting, they have also had explicit discussions about intentionally recruiting disabled people to their Board—a crucial and necessary step toward healing the long-standing power imbalance in philanthropy.
Take the Pledge
The challenge—and the opportunity—for the philanthropic sector, said Schroeder, is to use its power to elevate disability as a key component in the fight for justice. “We all must use our financial and reputational capital to normalize and embrace disability, not only in terms of making disability more visible, but also investing accordingly,” she said. “Change occurs when people in organizations recognize the need to grow. So philanthropy needs to recognize its need to grow.”
Foundations and grantmaking organizations (where grants constitute at least 30 percent of the budget), grantmaker affinity groups, philanthropy-serving organizations, and donor collaboratives, are encouraged to join their peers in signing the Pledge.
“There are other foundations out there that, like us, have had a presumption against these joint statements,” said MacArthur’s Palfrey. “This is one to consider making an exception for.”
About the author: Megan E. Doherty is a freelance writer and photographer. She was a 2021 Fellow at Disability Lead.