How Foundations Can Lead on Disability-Inclusive Grantmaking

(Photo by iStock/FG Trade)

Youth activist Greta Thunberg prefers not to call her autism a gift, but “under the right circumstances,” she has said, “it can be a superpower.” Since she began her weekly protests outside the Swedish parliament in August 2018, Thunberg has inspired over 1.4 million students to take part in youth strikes in more than 100 countries. She has always been clear that her activism and autism are connected. “It makes me see things from outside the box,” she has said. “If I would’ve been like everyone else, I wouldn’t have started this school strike.”

Her proud claim of a disabled identity is rooted in generations of activists in the disability rights and justice movements asserting that disabled people are powerful. Yet, many obstacles still stand against disabled people’s full participation in civil society, not least lack of knowledge, stigma, and prejudice by the non-disabled majority population, an attitude sometimes referred to as “systemic ableism.”

In 2017, the Open Society Foundations started reflecting on how we could intentionally and systematically support young and emerging disabled activists, especially those who are intellectually and developmentally disabled (who are often excluded even from programs specifically targeting disabled people). We learned a great deal from the experience of awarding two Community Youth Fellowships to young, autistic self-advocates—as part of a wider cohort of youth fellows—that we want to share with other organizations, not only those that are beginning to include young disabled people in their programs, but with all who work with young people. If your organization is not already working to include young disabled people, we would ask “why not?”

We are two white philanthropic professionals (not ourselves disabled but with disabled family members), and we had a commitment to inclusion. But putting this commitment into practice forced us to re-assess our standards. What some have called the “supercrip” narrative highlights and celebrates individuals who achieve great things despite their disability, like running an Iron Man triathlon or winning a competitive math prize. Yet this perspective leaves out the many disabled people who don’t see their disability as an obstacle to be overcome, who have different ways of achieving, and whose abilities to connect have to be understood using different standards of measurement.

To reach and build relationships with neurodiverse grantees, we had to make fundamental changes to the grantmaking process, which typically values speed, efficiency, and very particular ways of being "eloquent." We had to make adjustments to the application materials themselves to make them more inclusive and accessible, as we describe below. But we also had to move more slowly, not only to accommodate grantees’ access needs, different styles of communicating, and ways of being in the world, but also to accommodate our own relative inexperience. We had to go against some norms of pacing commonly held within traditional workplace culture. It was worth it.             

Inclusive Applications

Our Community Youth Fellowships support emerging leaders between 18 and 25 who are advancing democratic principles in their communities in the US. To make sure we included intellectually and developmentally disabled fellows, we used a “twin-track” application approach. The first call for applications was generic but designed to be accessible and inclusive; it was followed by a second call aimed specifically at young disabled people already active in their communities but with limited leadership experience.

"We came to understand that many applicants with relevant skills and abilities had no experience with our way of presenting proposals, our grant-making procedures, or our expectations."

In addition to ensuring that young disabled activists would apply, we also wanted to create conditions for their inclusion as full participants. To do this, we made the application materials available in English, Spanish, and in Easy-to-Read, a format that conveys information in short sentences with words that are widely used and easily understood together with images. We also removed formal education requirements from the application criteria, since barriers to their participation prevent most intellectually and developmentally disabled people from attending a higher education institution. And at the outset, we only asked for a letter of intent, rather than a full proposal, since that requires more time and effort and might have deterred and excluded some potential applicants. Only short-listed candidates were subsequently required to present a full proposal, for which we provided specific guidelines to assist the intellectually and developmentally disabled applicants. We also allowed candidates to submit parts of their proposals in video or audio format, in case they found that easier to handle than a written proposal.

Despite our efforts, we were surprised that a majority of the applicants to our first call did not identify as disabled. Why were intellectually and developmentally disabled activists not applying? In accordance with the disability movement’s principle of “nothing about us without us,” we had already asked the Autistic Self Advocacy Network, one of our grantees, to help us disseminate the call to their contacts and to ensure it was inclusive and accessible. But when we re-opened the call to attract more disabled applicants, we engaged a neurodiverse consultant as well as another who was familiar with the intellectually and developmentally disabled community. They helped us reach out to networks unfamiliar to us, such as progressive disability provider organizations working with young people on independent living and employment inclusion. We also did direct outreach to community colleges, community centers, and networks of grantees working with and for disabled people. We used social media geo-targeting strategies to ensure the call reached geographic locations underrepresented in the original application pool. We hosted open webinars in English and Spanish and offered Computer Access Real-Time Transcription (CART) to better enable information access.

While these adjustments were initially made to attract young people with disabilities, feedback from the other fellows suggesting that adopting Universal Design principles benefitted everyone. But our consultants also helped us learn to see differently, to look differently at applications that we had initially seen as not “polished,” and to focus our attention on what was original and engaging about the applicants’ projects, disregarding language or presentation. We came to understand that many applicants with relevant skills and abilities had no experience with our way of presenting proposals, our grant-making procedures, or our expectations.

When it came to the interview stage, we were mindful of research findings suggesting that interviewers tend to select people they perceive to be culturally similar to themselves. We therefore had two intellectually and developmentally disabled colleagues brief us before the interviews to put us at ease with some of the communication methods of non-speaking autistic and neurodiverse candidates. They instructed us always to address the candidate (never their personal support worker), to avoid judging social cues such as lack of eye contact, to ask concrete questions, and to allow more time for answers. As we came to recognize, the whole interview environment needs to change in order to become more receptive to different communication styles and different needs.

Accessible Events

Two autistic self-advocates were among our six inaugural fellows. One was working to advance LGBTQ rights in Kentucky, the other to promote the rights of non-speaking autistics across the US. As we began to work with them, we implemented guidelines for holding inclusive events: asking everyone for any accommodations they may need to be made for them, making sure the meeting was scent-free, welcoming people who might be moving around the room or “stimming” (movements many autistic people make to process sensory overload), and preparing name tags and color communication badges (green, orange, and red) so that participants could signal the extent to which they wanted to talk to others. We circulated a list of questions to be asked at the meeting, in advance, to avoid putting anyone on the spot, reduced the number of icebreakers, and avoided activities that involve touching, looking each other in the eyes, or expressing feelings on the spot.

At the start of our first event for all fellows, every participant shared one fact that would help the group understand how best to interact and communicate with them, helping nondisabled fellows reflect that everyone has particular communication styles and preferences. Accessibility considerations included Communication Access Real-time Translation (CART) and Spanish interpretation, more relaxed pacing (50-minute sessions followed by 10-minute breaks), and large font documents. To describe what participants should expect from the flight, hotel, and event agenda, we used Social Stories, a communication tool used to exchange information with autistic people.

During the tenure of the fellowships, we continued to advance inclusive and accessible principles by providing accessible grant requirements, inclusive cohort meetings, and professional development opportunities. Fellows were also given a budget to hire a support person. Each fellow had a formal or informal host organization and a mentor to support them. The creation and implementation of the fellowships was a team effort: We were the “engine,” but the work involved building relationships across Open Society Foundations, with colleagues from other programs to operational units like IT and facilities, who supported us in setting up accessible technology for events

Conclusion

Self-advocacy means disabled people speaking up for themselves and taking control of their own lives. Engaging disabled people as consultants from the start was crucial to our ability to attract and select two extraordinary disabled self-advocates. But we still have a long way to go.

In retrospect, after meeting and becoming more familiar with the work of disability justice organizations and activists in the US—organizations like Detroit Disability Power, Sins Invalid, and disability justice activists like Leah Lakshmi Piepzna-Samarasinha and Patty Berne —we recognized that we could and should have adopted a disability justice framework that examines how disability and ableism relate to other forms of oppression and identity: race, class, gender, sexuality, citizenship, incarceration. We could and should have been more proactive in identifying and including disabled Black, Indigenous, People of Color (BIPOC) activists. The disability justice movement specifically aims to center queer people of color with disabilities, and we recognize this as an important next step for us.

We made an important start. But there will always be more to do. The inclusion of disabled people in an organization is not about “helping” them come on board while leaving the organization unchanged. It is about recognizing and valuing—and growing, as an organization, to include—the very distinctive skills, perspectives, and experiences that disabled people bring.

Read more stories by Rachele Tardi & Zachary Turk.