How Funders Can Make Incapacity Seen

(Photo courtesy of the Ford Foundation)

COVID-19 has laid bare what the disability community has been telling us all along: current systems have failed people with disabilities because they were not created with disabled people in mind.1 As the new UN Special Rapporteur for Persons with Disabilities Gerard Quinn noted at the Human Rights Council’s 46th session, “The COVID-19 pandemic has painfully shown that … persons with disabilities are treated as if they are invisible … invisibility can create inequality, and unequal treatment can itself lead to, or reinforce, invisibility.”

One in five Americans have a disability, one in every three families has a household member with a disability, and more than one in three of us globally will eventually join the community. And yet a CEP report on equity in philanthropy notes that just 9 percent of foundations reported an increase of funding related to people with disabilities since the pandemic began, and not one explicitly mentioned disability in any of their interviews. Funding for disability policy, advocacy, and rights is paltry, with just six foundations investing over $1 million in 2018, while, globally, just $57 million of grantmaking included persons with disabilities (even more dismal given that more than 80 percent of persons with disabilities live in the Global South).

In 2016, disability leaders called the Ford Foundation out for excluding disability in the foundation’s then new mission to combat inequality. This humbling moment pushed us to make a comprehensive effort toward disability inclusion in both our grantmaking and operations.

Disability leaders have been teaching us that addressing inequality means understanding and investing in disability work. Disability not only intersects but profoundly exacerbates the very inequality that social justice philanthropy is committed to addressing. On the one hand, poverty causes disability in a myriad of ways, from lack of access to healthcare and proper nutrition to a greater likelihood of living and working in dangerous environments. On the other, disability also causes poverty, given the outsized expenses of healthcare, discrimination in employment, and public policies which are designed to limit many disabled people to subminimum wages. Disabled people are three times as likely to be denied healthcare—and twice as likely as non-disabled people to die from lack of basic care—while up to 50 percent of use-of-force incidents with the police involve a person who is disabled. Girls and young women with disabilities experience gender-based violence at rates up to 10 times more than those without disabilities.

Disability is a relatively untapped area of investment for philanthropy, but one that offers promise of change and multiple avenues for donor impact. We hope that by sharing the steps we have taken, and our lessons learned, other funders can build a roadmap toward disability inclusion.

1. Understand Frameworks of Disability and Recognize Ableism in Philanthropy

Traditionally, many equate disability with a medical impairment or diagnosis, relegating the issue to medical professionals who seek cures and parents who seek therapies. However, disability is also an identity rooted in a long history of power, discrimination, and community. Disability has a culture; indeed, it has many cultures. Without recognizing disability as a political identity grounded in community and pride, we cannot fully understand why disability is fundamental to social justice (or why social justice is fundamental to dismantling ableism.)

“A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity,” as Talila A. Lewis defines it, ableism defaults and prioritizes non-disabled bodies. It perpetuates stereotypes and discriminatory practices deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism.

Only by challenging these socially constructed norms can we create truly inclusive communities and workplaces. And philanthropy too often reinforces ableism through inaccessible grantmaking processes and communications, failure to include disability in diversity, equity, and inclusion (DEI) efforts, and starkly insufficient funding. For years, the disability community has knocked on our doors, tried to pitch to our funding priorities, but most donors are unable to see the work of disability organizations as “fitting” within donor strategies. We hold inaccessible events or maintain exclusionary grant portals, sending inadvertent messages of exclusivity, all the while aspiring to be inclusive.

2. ‘Nothing About Us Without Us’

First used by South African disability rights advocates in the 1980’s, “nothing about us without us” invokes not only dignity and respect but the political power disabled people demand in knowing what is best for ourselves and our community. It rejects the notions that medical experts, parents, or philanthropists can or should speak on behalf of disabled people. But while “nothing about us without us” might begin with access and participation, it ultimately implies the leadership by those most affected, particularly disabled people who are queer, trans, gender non-conforming, women, Black, indigenous, people of color (BIPOC), and immigrants. How each of us experiences disability is deeply affected by these other identities and therefore the most effective ways to address ableism and oppression must involve these groups.

Here’s how to start:

• Establish advisory groups: Like all communities, there is no monolithic “disability community” and we must be wary of depending on single advisors. Advisory groups have the advantage of building relationships between staff and disability leaders, fostering staff learning from members of the disability community, and gathering input directly from disabled people. While you might not be able to achieve everything all at once, it’s critical to listen and understand before choosing priorities. To help get you started, check out Ford’s guidance on creating disability advisory groups.
• Hire disabled people: Advisory groups and consultants are not the same as full-time staff. Philanthropy must urgently consider how it can recruit, hire, mentor, and grow disabled leadership, particularly by people of color with disabilities. Like any other DEI initiatives, disability hiring is not successful in isolation and must be tied to learning, cultural change, and leadership. Robust resources on inclusion practices already exist to support employers in this work.
• Ask grantees how they include people with disabilities: How do your grantees involve people with disabilities in decision-making, and designing and implementing projects? How is the work accountable to the disability community? Are activities accessible, and has the organization budgeted specifically for this? The strongest projects and organizations involve disabled people at the highest levels and not simply as constituencies to be targeted. When people with disabilities lead the work, and contribute to agenda-setting, this embodies “nothing about us with us.” Not only does leadership by people with disabilities provide legitimacy and build trust, it fosters attitudinal change and brings deep lived expertise to the work.

Participation is not simply a task to check off a list: ideally, it should be iterative and result in ongoing dialogue and mutual learning.

3. Establish Disability Inclusion Goals and Accountability Measures

What counts gets counted. Add disability to a list of communities you care about, with clear goals and action steps. Include disability in your next staff or board demographics survey.

At the onset of this work, Ford Foundation President Darren Walker and his team made an initial list of action steps and tracked progress against that list. Program leadership identified specific grantmaking benchmarks that we evaluate regularly. Every team identifies specific action steps, like learning related to natural resources and disability or changes in human resources practices and policy. Guiding our action steps are four principles that articulate Ford’s values in relation to disability inclusion: advancing a human rights and social justice approach, abiding by “nothing about us without us, emphasizing intersectionality, and embracing learning.

4. Chart a Path for Learning

Philanthropy has a lot to learn and unlearn. Charting an intentional path for learning helps us collectively discover areas for exploration to uncover ways that we work, which run counter to disability equity.

Ford’s learning journey continues today, and part of this work is acknowledging missteps. For example, after an institutional effort to document Ford’s DEI learning with our grantees on issues of discrimination and harassment, we realized that disability had not been included in our case studies. To rectify this, we developed the Funder Guidance and Case Studies for Disability Grantmaking, released last fall. The guide is part of the DEI suite of resources, but also distinct. It answers several questions, including “what does it mean to include disability in my social justice grantmaking?

Drawing from our own learning, the guide provides practical ways for donors to start integrating disability into their funding:

• Establish disability training: A common place to start is diversity training. Disability 101 training and staff orientations remain invaluable, sharing definitions of disability, exploring how inequality and disability relate to one another, and how our language and interactions can combat ableism. They open the door to learning and meet people where they are. At the same time, they are not sufficient; we also need steady and sustained peer dialogue and dialogue with diverse people with disabilities. At Ford, making disability visible has meant a stream of events, such as Disability Dish, where disabled community members share their personal experiences of ableism and disability culture and identity. It has also meant disseminating resources on disability advocacy and culture, such as the challenges around self-disclosure. Integral to our learning has been our relationships with the disability community (whether those are advisory groups, grantees, or critiques about our shortcomings).
• Establish a community of practice: In early 2020, Ford convened a Disability Learning Group that brings together program staff from the US and global regional offices to share grantmaking practices, challenges and approaches and inform our institutional efforts. The learning group cohort fosters peer learning around disability-inclusive strategies such as surveying grantees, issuing requests for proposals or charting field-specific learning agendas. It also connects our organizational goals to the priorities of program teams.
• Support grantee learning: Just as most donors are new to disability inclusion, our grantees also need support to build the knowledge and relationships to engage in strong disability rights and justice work. This an opportunity for donors to be vulnerable and learn together with grantees. Be transparent about your own learning process and recognize that while disability may be a new area for some, others may already have deep experience or expertise. For example, an honest conversation about disability between Ford’s Natural Resources and Climate Change team and Global Greengrants Fund has opened an opportunity to bridge environmental justice and disability.

Donors can also help by commissioning desk research to identify advocacy and funding opportunities. For example, a team at Ford funded Civic Engagement and People with Disabilities: A Way Forward Through Cross-Movement Building, a report that highlights the barriers that disabled people encounter when trying to make substantive change in their communities, and how philanthropy, disability rights groups, and civic engagement organizations can support disabled leadership. Ford has partnered with 16 other foundations that have taken steps toward disability inclusion, and together, we established the Presidents’ Council on Disability Inclusion in Philanthropy. While we are all at different stages of our journeys, we continue to learn from each other and share our insights to the wider sector via the Disability & Philanthropy Forum. We encourage you to explore the site, which includes information on disability history, culture and identity, accessible operations, and inclusive grantmaking.

1 We will use disabled people and people with disabilities interchangeably. While many still prefer “people-first” language, younger people and others in the disability community are increasingly embracing the “identity-first” language of “disabled people.”