For Philanthropy to Succeed, All Strategies Must Address Disability

“There is no issue in the social justice space that we will ever be able to remedy as long as disability is not at the table.” – Rebecca Cokley, Program Officer, Ford Foundation

Addressing issues related to disability and access are often cordoned off within the social sector and philanthropy. Disability is often deemed as “separate” from issue-specific systems change work, such as education, climate, economic mobility, or health equity. Funders supporting causes like these may think that their focus does not require including disability, or that addressing disability may make things “too complex” and “out of scope” for their issue-focused grantmaking efforts.

This exclusion of disability from the wide spectrum of grantmaking has its own reverse multiplier effect. Instead of scaling change to reduce inequity and create the conditions for more people to thrive, excluding disability means that change only addresses a subset of people while overlooking communities deeply affected by systemic inequity.

For example, any funder wishing to end income inequality and support economic mobility in America will find it challenging to achieve their goals if they are not factoring in the impact of the subminimum wage as well as current policies that prevent disabled Americans from wealth-building, including getting or staying married. Embedding disability into the fight to end poverty can shift a funder’s strategy from “some population change” to “true population-wide change.”

In this podcast episode, we talk with a group of philanthropic leaders who are each dedicated to advancing disability justice. We discuss why addressing disability is imperative for all grantmaking to be successful, and how funders can embed disability across all of their philanthropic work.

Featuring:

• Miya Cain, Associate Director, FSG (Moderator)
• Rebecca Cokley, Program Officer of U.S. Disability Rights, Ford Foundation
• Ryan Easterly, Executive Director, WITH Foundation
• Sandy Ho, formerly Program Director, Disability Inclusion Fund, Borealis Philanthropy, and currently Executive Director, Disability & Philanthropy Forum

Ways to listen: You can listen below or on your preferred podcast streaming service, including Apple Podcasts, Spotify, Simplecast, iHeartRadio, Amazon, and other podcast apps.

Please find a transcript of this talk further down this page.

Resources and Footnotes

• Disability Rights at Ford Foundation
• Disability Inclusion Fund at Borealis Philanthropy
• WITH Foundation
• Disability & Philanthropy Forum
• Sins Invalid
• Disability Visibility Project
• Ramp Your Voice
• The Curb-Cut Effect
• Imani Barbarin: Creating Accessible Spaces for Belonging

More on Collective Impact

• Infographic: What is Collective Impact?
• Resource List: Getting Started in Collective Impact

Music

The Intro music, entitled “Running,” was composed by Rafael Krux, and can be found here and is licensed under CC: By 4.0.

The outro music, entitled “Deliberate Thought,” was composed by Kevin Macleod. Licensed under CC: By.

Listen to Past Episodes: You can listen and subscribe via Apple Podcasts, Spotify, Simplecast, iHeartRadio, Amazon, and other podcast apps.

Podcast Transcript

(Intro) Welcome to the Collective Impact Forum podcast, here to share resources to support social change makers working on cross-sector collaboration.

The Collective Impact Forum is a nonprofit field-building initiative that is co-hosted in partnership by the nonprofit consulting firm FSG and the Aspen Institute Forum for Community Solutions.

In this episode, we’re discussing why it’s critical to include disability across all philanthropy and grant-making. Disability is innately connected to every social issue, but for some reason disability is often deemed as “separate” from issue-specific philanthropy, such as supporting education, climate, economic mobility, or health equity.

This exclusion of disability from the wide spectrum of grantmaking has its own reverse multiplier effect. Instead of scaling change to reduce inequity and create the conditions for more people to thrive, excluding disability means that change only addresses a subset of people while overlooking communities deeply affected by systemic inequity.

To explore this important topic, we talk with three philanthropic leaders who are each dedicated to advancing disability justice. We discuss why addressing disability is imperative for all grantmaking to be successful, and how funders can embed disability across all of their philanthropic work.

Joining this conversation are Rebecca Cokley, who is program officer of U.S. Disability Rights at the Ford Foundation; Ryan Easterly who is executive director at WITH Foundation, and Sandy Ho who, as of recording this discussion, was program director at the Disability Inclusion Fund at Borealis Philanthropy. As we release this episode, we share our congratulations to Sandy who is now the new Executive Director at the Disability and Philanthropy Forum. Moderating this discussion is my colleague Miya Cain who is Associate Director at FSG. Let’s tune in.

Miya Cain: Hello, everyone. My name is Miya Cain. I’m an associate director at FSG. I’ll be your host for today’s episode of the Collective Impact Forum podcast.

I’m very excited about the conversation we’re about to have. In a way it feels like a continuation of a conversation I hosted last year with disability activists and speaker Imani Barbarin where we talked about what it means to create accessible spaces for everyone to belong. In that talk, Imani mentioned that one of the most important things needed to create accessible spaces for everyone is our own imagination, to imagine what is possible and to imagine the variety of possibilities that can exist at one time. I think it’s in that radical imagining of multiple possibilities at once that we start to build an environment that is inviting and flexible to the multiple and varied needs that we all have.

We will dive into some of these possibilities in our conversation today. Disability justice work is critical to collective impact work because disability is woven into all the social issues that collaboratives are working on across the country, including education, health, workforce, climate, and community development. Because disability touches so much of our work it’s critical to factor in disability as we build and implement our collaboratives to ensure that disability justice is a foundational part of the equitable outcomes we are all working towards together.

I’m truly honored to be talking with three exceptional leaders who are each dedicated to disability justice and work to promote disability justice through their roles in philanthropy. Please let me welcome to the conversation Rebecca Cokley, program officer of U.S. Disability Rights at the Ford Foundation, Ryan Easterly who is executive director at WITH Foundation, and Sandy Ho who is program director at the Disability Inclusion Fund at Borealis Philanthropy.

Rebecca, Ryan, and Sandy, thank you so much for joining me today for this conversation. Let’s start out by getting to know a little bit more about you. What has brought each of you to your current role working to promote disability justice?

Rebecca Cokley: This is Rebecca. I can jump in. For me, working in the disability rights space was really the family business. My mom was a disability student services director at a community college, which is a person whose job it is to help people get accommodations, and she entered that work because when she was a student at the same college the person in charge of accommodations was completely terrible. My mom made a career of revenge, basically, and was like, “I am going to go to school to get this job to take it away from this woman who’s completely terrible.” My dad ran the Center for Independent Living which is a grassroots disability rights organization led by people with disabilities. I was born in the movement spaces. I grew up surrounded by a multitude of amazing people with disabilities in all different types of professions with all types of different backgrounds.

For me what really solidified it was when I was in middle school and I had a good friend who grew up over in Fairfield in the Bay Area. He was bullied one day and thrown into a dumpster. They didn’t find him until late in the evening because he couldn’t get out of the dumpster, and they assumed that he had gone to after-school activities. The next day when he went back to school he brought like a little T-bat with him to defend himself from the bullies and he was expelled for harboring a weapon. I was in high school, and I remember just being completely shocked because that’s not how I was treated in my school district, and my parents had the real come-to-Jesus conversation with me that this is actually how most kids with disabilities are treated, and subjected to harsh and discriminatory discipline policies. Sort of at the moment in my life I was like this is f-ed up and this is not OK and if I can do something about it, I want to be able to be in a position where I can.

Miya Cain: Thank you so much for sharing that. Sandy, go ahead.

Sandy Ho: This is Sandy speaking. When I think about how I was brought into the community and it really starts with when I was in kindergarten, it was the year the 1990 the Americans with Disabilities Act passed, and I say thanks to Rebecca, who coined the term “the ADAgeneration.” I worked hard and since then I haven’t known a society in the world where disabilities rights have not existed. That being said, as somebody who grew up poor, working class, and a child of immigrants and refugees, my parents did not speak the language and had to navigate our overly complex medical care system and I watched and learned from their advocacy and how they worked together with other non-English-speaking parents and families and communities.

And so, even though I didn’t have the language or know about disability justice or rights, learning about them later on in my career has always resonated and I come to this work as a community organizer under the Disability & Intersectionality Summit. Prior to my role in philanthropy I was a disability policy researcher at the Community Living Policy Center, and so having the privilege of a career where I actually have worked in disability spaces, it wasn’t until recently that I realized, oh, that’s not actually how most folks maybe come to this work.

The way that I see disability justice still is like this has aways been about the politics of building power and collective movement, and so since I did come across the work of Sins Invalid, Alice Wong, Vilissa Thompson, and others, that has just remained central to the work that I continue to do.

Miya Cain: Thank you, Sandy. Ryan?

Ryan Easterly: Similar to Rebecca and Sandy, I think I come to this work largely due to lived experience. I was born with an apparent disability of cerebral palsy. I later acquired a nonapparent disability of a mental health diagnosis.

I think similar to many other people with disabilities my first foray into the work began as working with my family to advocate for myself, then realizing later on that I could also use my skills and my understanding and knowledge to help benefit those around me that also had disabilities. Once I felt comfortable in the ways I was able to advocate for myself, I expanded that to begin to advocate for others and started several advocacy organizations in Alabama. That’s where I grew up and thus the accent that you may hear. Then from there I did a number of different advocacy-related things including within state government and nonprofit organizations and then eventually came to, I spent a short amount working in the federal sector and then transitioned into working in philanthropy and to be frank with you, when I got my first job in philanthropy, because of the way I grew up, I did not realize that you could have a job giving away money. So it was something new to me. But then, once I realized what the job actually was and how rare it was for someone with my lived experience to have an opportunity to influence decisions and to shape grantmaking, I’ve been hooked ever since.

I did take a short break and worked for a tech company, but what brought me back to working in philanthropy was I had the privilege and honor of serving on the board of WITH Foundation with Alice Wong and Stacey Milbern who are pioneers in lots of different ways but especially in regards to disability justice. Eventually I transitioned to actually working for the foundation in the role of executive director and in that time, I have helped move the foundation from being more around the medical model and increasingly advancing disability justice within the health care sector itself.

Miya Cain: Wonderful. Thank you so much each of you for sharing. I’m really hearing this theme running through of early lived experience and then also compassion for others who might not have had the supports or resources that you found yourselves having. And also just how important it is to have people with lived experience in the field making these decisions about where money goes and how programs are designed.

Before I get too deep, we often like to share definitions with our audience to really help ground the conversation. I’d like to ask, what does disability justice mean to you?

Sandy Ho: This is Sandy. I’ll hop in here. I want to start by saying and this is perhaps a little bit of the academia hat in me so I feel like I can but for audience members listening in, if you had not already, please do some of your own homework too, and look up the work of Patty Berne from Sins Invalid, Alice Wong, Vilissa Thompson, PeoplesHub and others that I know both Becca and Ryan will name as well.

But for me, disability justice is a framework, that it is made up of 10 principles to guide collective struggle and to be liberated from able-bodied and White supremacy. When I think about what it means to me and how it shows up in whether it’s my day-to-day life or in the work of the Disability Inclusion Fund, it’s really to help identify and understand where power is held, particularly in the work of dismantling ableism which we also know is reinforced by anti-Blackness and other systems that oppress and exploit Black and Brown disabled bodies.

This is I think a really helpful place to start especially because we have already seen ways in which disability justice and this terminology being collected including in spaces in philanthropy, so I appreciate that this is where we’re starting the conversation.

Rebecca Cokley: This is Rebecca. I would jump on the last point that Sandy made so perfectly, which is disability justice is not a philanthropic value. It can’t be because disability justice in its very framing is anticapitalist. Unless the benefactors of the various entities that we work with are suddenly going to open up the money bin and start handing it out to everyone on the street, and even then, that wouldn’t come close to restorative framing for the significant harm that philanthropy has done to the disability community.

The very funding of the eugenics movement has its roots in the person who founded the building that I work in every day. Henry Ford was one of the biggest advocates for eradicating people like the three of us on this podcast, or actually, all of us on this podcast if I’m being technical. I think philanthropy can’t operate from a place of disability justice because we would have to simply, spontaneously combust to be able to do so, but we can use those values as guiding principles to inform the grantmaking, the groups that we work with and how we do our work. But we can’t objectively claim to be disability-justice centered just by the very fact that we exist.

Ryan Easterly: I would only echo what Becca and Sandy have said, but I think to add to add to it. I think for me when I hear disability justice and the disability justice framework, I do think that it is specifically centering the experiences and the needs of people of color as well as queer, gender-nonconforming, disabled people, and it acknowledges and supports how we’re interdependent and the principles of collective access for everyone.

And when I think about it in terms of the work within philanthropy as Becca says, there are things that as a funder there’s friction when it comes to truly embodying and truly advancing disability justice but as a funder, I think none of us that are on this podcast today were envisioned to be part of philanthropy. The roots of philanthropy none of us were envisioned to be in decision making positions, and I think part of the work of disability justice is there are ways that each of us working in philanthropy can still advance the principles of disability justice within our institutions and can still work to support the organizations that can fully embody the principles of disability justice and we do owe it to ourselves and to our communities and to those with lived experiences, especially those with multi-marginalized experiences to find the ways that we can advance this work in as many ways as possible.

Miya Cain: Thank you so much. I really love how you all are highlighting how important it is to identify and understand where power is held and that disability justice is also about addressing these interlocking oppressive systems like capitalism, like anti-Blackness, and really being able to center experiences and needs of people of color and queer and nonconforming disabled folks and also that this point that you made, Rebecca, about we can’t be disability justice centered by the fact that philanthropy exists because of how it’s the result of capitalism, but disability justice can provide some guiding principles to inform our grantmaking on the path to dismantling the systems.

As we talk about what it means to help shift philanthropy and foundations towards using these guiding principles of disability justice in their grantmaking and also in organizational cultures. Can you just share a little bit more about why you think this shift is so important to happen in the philanthropy field?

Rebecca Cokley: I can jump in. This is Rebecca. To me, there is no issue in the social justice space that we will ever be able to remedy as long as disability is not at the table. For example, let’s talk about the racial wealth gap. The racial wealth gap will never be remediated as long as the sub-minimum wage exists, whether it’s in the public sector or it’s in carceral settings. The fact that it is legal to pay people as little as $2.15 a week and we don’t include that in the conversation around closing the wealth gap, means we’re never going to close the wealth gap.

If we’re talking about gender-based violence, the fact that 80 percent of girls with Down’s Syndrome are raped or sexually assaulted before they reach the age of 18, and the rate’s even higher if you’re a girl of color. You can’t end gender-based violence unless disability is at the table, and even then, it doesn’t acknowledge the fact that you can become disabled as a result of gender-based violence through trauma whether it’s physical or psychological.

So for me, I think the key point that I tend to make in philanthropic spaces is that this is a tool to also make your work more effective. You will not achieve your goals as long as you’re leaving out the community that is the most disproportionately represented in every other marginalized community.

Sandy Ho: To build off of what Rebecca has started off with hereis to say that even today in 2024 when there are still funders telling us that we don’t do disability when for generations and historically philanthropy has poured investments into democracy, journalism, leadership development, community development and all that, right? The presumption there being the ableist bias there that I hear is, oh, you all don’t think that disabled people in our community are already in the work that you’re doingand are not meant to be part of that work in the future.

And so at the Disability Inclusion Fund we state for these reasons that our fund valued our aligning with disability justice and inclusion which is to say that everything from the way that our team is stacked and led to the decision making around our grants is directly informed by self-advocates and disabled people.

And I would just add that we cannot also solely just morally justify our way to liberation in more than just correcting the wrongs that have happened but also when we look at the scale of the inequities in investment, to inform the philanthropy perceiving disability in medical research or direct services, we cannot just say that those are not necessary but when we look at the work that is resourced in some of the disabled-led organizations, that’s where we’re seeing the gaps. And so for philanthropy and foundations’ role in social justice and in that democratizing society and all of those values, to not have this be part of the analysis is why it’s so important.

Ryan Easterly: As Rebecca and Sandy have touched on there is the data aspect. More than the 61 million Americans that experience a disability, of those we know that one in four are Black Americans that experience disability. There is the data side of things. By supporting disability justice it also acknowledges the ways in which all communities are interconnected and ultimately supports cross-solidarity work, which is critical in ultimately helping all communities be able to survive and thrive and achieve an equitable society. I think it’s a critical part of the work and I sometimes when talking to other funders and other peers in the space, I say by embracing disability justice principles it does help everyone. There’s the dollars of it but also you start to see changes within the culture of your organizations.

One of the simplest concrete examples I can provide is at WITH Foundation we try to advance the principles of disability justice in as many ways as possible, and one of those is when we have meetings, we start with access check-ins and inclusive introductions. In inclusive introductions we provide a brief description of ourselves and then the access check-in any member of the meeting is allowed to say what they need to be able to fully participate, fully engage within that meeting at that time. And people’s needs can change, but one of the things we always see is that even though some folks may think of it as, oh, if you have a disability you have an access need, but we also see people that may have child care concerns or other issues that they’re facing for the day, feel comfortable and say, hey, folks, here’s what I need to help me fully participate in the meeting. I think that’s a concrete, a simple example of not only does it foster an equitable society, but it can make changes in the cultures that we’re working in in small and large ways.

Miya Cain: Yes, Ryan, what I’m hearing you share about this work reminds of the curb cut effect and how ramps and sidewalks were created initially for wheelchair access, but now, people with strollers and people with skateboards and people with rolling suitcases are benefiting from these changes. It’s so important to think about how creating an inclusive culture really does help everyone in that culture to thrive.

Rebecca and Sandy, also just want to reflect back when you were saying about the fact that especially as we’re talking to our audience members in philanthropy and funding, you can’t achieve your goals as long as you leave out the groups that are most disproportionately represented in the challenges that they’re trying to address. It is just so important to make sure that this conversation is happening.

Sandy and Ryan, you both started to bring up some of the ways that your foundations are actually making a shift towards prioritizing disability justice. Sandy, you mentioned that your team staffing and leadership and grant decision making is all directly informed by disabled people, and Ryan, you were telling us about how you start your meetings with access check-ins and inclusive introductions, and I’m wondering if you all can share a little bit more for our foundation partners about what it might look—what does it look like for your foundations to prioritize these principles of disability justice in grantmaking and also in how the organizations themselves operate?

Sandy Ho: This is Sandy. So when we consider the waysthat historically that both Rebecca and Ryan have shared previously that disabled folk are not included in this space and certainly not as decision makers, so the Disability Inclusion Fund as at Borealis Philanthropy which is an intermediary, when the fund was first established and launched in late 2019, early 2020, by the President’s Council with credit to Ford Foundation, Robert Wood Johnson, and WITH, that included in the funding structure is participatory grantmaking.

This idea that the mantra of the disability rights and independent living movement wrote nothing about it without us is explicitly part of how we do our day-to-day work, and so each round of our funding, it is not the expertise of myself or our program officer, Nikki Brown Booker, or other members of our team but we said we’re not the ones who necessarily have all of the expertise. We might facilitate and guide the process but really it is those who are closest to injustice and ableism especially who have the best solution and ideas and should be the ones who are leading us forward in this work so this is why our fund is committed to participatory grantmaking, and we have a committee of self-advocates who review our proposals.

So each year of our open funding we’ve received anywhere between 125 toover 200 proposals, and our committee reviews and has challenging discussion and questions about where are the groups, what are the priorities as we’re looking at movement and this incredible breadth and the depth of the proposals that are coming in.

And the other piece around this that I would say too is when we change the conditions to which movement is accessing funding, that is a part of this work as well, and making sure that grant applications are as accessible as possible is fundamental and very key to this work. While the Disability Inclusion Fundhas done some of this, we ourselves are constantly improving our own accessible grantmaking processes so having alternative formats, easy, plain-languagematerials, whether it’s Microsoft Word or some other format, that’s something where I think our peer grantmakers in this space are challenged by because so much of philanthropy rests on, well, this is the way it’s been done and this is just how it’s always been and so why should we change, and many think some of the work that we’re doing together is challenging some of that.

Ryan Easterly: In terms of WITH Foundation, I do want to acknowledge that the roots of the foundation—we’ve existed since 2002, and the roots of the foundation are actually as a family foundation but how I began working with the foundation was as a board member in a community member slot meaning that I am not a member of the family, and I acknowledge that some of what has helped me advance this work and help create the shift was put in place prior to me becoming involved with the foundation so it is a privilege and a luxury in some ways that when the foundation was established, they knew they wanted to give to disability but they also understood the value of having folks with lived experience on the board being able to make decisions.

So the fact that that was already set up allowed me to join the board and to continue to enhance the work. I also as a board member helped reinvigorate their community participatory model. In 2014 was the first time the foundation began using a community participatory model in that we have a self-advocate advisory committee that acts as co-decision makers in our grantmaking.

That first committee was actually started by Stacey Milbern, and then in 2016 helped enhance the model, and we’ve used this approach ever since then, and as I said, the advisory committee are really co-decision makers in our grantmaking, and we are very intentional in making sure that folks with lived experience of intellectual and developmental disabilities are present in all aspects of our operations so that also includes the vendors we use as well as within our decision making and grantmaking.

But for the organizations out there, obviously you’re going to hear from us all today, we want philanthropy to hire more folks with disabilities in general into decision-making positions but there are other ways that you can further this work that can enhance the hiring you’re doing, and it’s as simple as thinking about disability in the questions you’re asking to applicants and your existing grantees. It’s are you asking your partners to say how are you intentionally addressing the needs of folks with disabilities. How are you specifically addressing the needs of people of color with disabilities?

We know as funders that the questions we ask can shape things so from my perspective, yes, please hire folks. Please be intentional in the dollars you’re providing but also start just by asking the questions. We all have application processes. We all have conversations with applicants with our existing grantees, ask them how they’re intentionally addressing the experiences and the needs of people of color and people with disabilities.

Rebecca Cokley: I would add on to what Ryan said and share that at the Ford Foundation we’ve been successful in implementing that very thing. Every applicant or every organization that submits a proposal to the Ford Foundation has to submit certain information, demographic data, on the leadership of the organization and of the board of directors, and we specifically ask how many people with disabilities are part of your executive leadership team, and how many people with disabilities are on your board of directors.

One thing I think it’s important to note is that there may be people with disabilities working at an organization, they just don’t feel safe publicly self-identifying either for demographic capture, for leadership, for frankly the ableism that they undoubtedly suspect that they would face if they self-identified. I mean I always joke that if I’m in a job for over six months which I like to say I typically have lasted over six months in a job, not a Scaramucci over here at all, it takes about six months until people start coming to my office or to my cube and self-identifying to me, and being like, yeah, I have ADHD or I live with a substance abuse disorder or I have a chronic condition.

I think one of the things that I’ve definitely seen in my tenure in philanthropy, especially in the last year or so, I’ve watched a number of senior leaders at the Ford Foundation start to self-identify who have been at the organization since way before I got there but for the first time actually felt safe talking about it and talking about it publicly, and it’s been really fascinating watching the ramifications of that so I would actually argue that if you’re the leader of a foundation or if you’re in the leadership of a foundation and you’re keeping your disability to yourself which is your right, and you have the right to identify at any point in time and to ask for accommodations at any point in time but think about what that says to the other people with disabilities who don’t feel safe self-identifying in your organization. You’re perpetuating a culture of fear and of stigma, and what would it mean if you chose to publicly self-identify? Would it actually make a more equitable workplace because the people that are at sort of lower rungs of the ladder within your organization would actually know that they could strive to attain a leadership role, and that that might be open to them, that the organization would be more supportive of somebody getting accommodations so they could fulfill the essential functions of their job.

That would be my charge which is if you’re listening to this and you’re in the leadership of a foundation or a philanthropy-serving organization and you don’t self-identify, what would it take for you to be in a position where you would feel safe and supported doing so?

Miya Cain: So glad you raised that, Rebecca, because it really starts with the organization, it starts with the leadership. Instead of perpetuating fear and stigma, we can be perpetuating inclusion and courage.

You also just made me think about myself. I deal with a physical disability, neurodivergence, and I think in my space it felt easier to talk about the physical aspects, and being in consulting and being in a field where part of what we’re working on with our clients is using our mind, I felt afraid of sharing my own neurodivergence or judgment or how that would impact teams. What would my team think about me, and I think once more people start sharing and talking about it, it really does take down that fear, and actually, like you said, once I started sharing, more people started coming to me to share their own experiences that they might not have been comfortable sharing, and I think it’s contagious, that openness and that demonstration that it’s OK to be yourself.

Rebecca Cokley: Hey, Miya, welcome. We’ve been waiting for you. Our community is infinitely strengthened by your presence, and we’re thrilled to have you here.

Miya Cain: Thank you so much. Thank you, Rebecca.

I also wanted to kind of reflect back some of the other ideas that you all lifted up about what foundations can be doing so you were talking about the process itself. What do these grant applications look like, accessibility, accessible formats, plain language, the decision-making process, and the participatory grantmaking, and then also making sure that the decision-making positions are filled with people who have disabilities who are self-advocates and self-identified, and then, Ryan, you started to talk a little bit about the way that funders can use their influence and their position to advance and expand disability justice beyond your organization.

So one example that you shared was you can ask partners questions and the questions you ask shape things so you can ask questions about how are you intentionally addressing needs of disabilities or addressing needs of people of color with disabilities, and then that means that all of these organizations are now thinking about that, articulating that. If they’re not doing it, it’s kind of a signal to say, hey, maybe this is something we need to start doing, and funders just have a really large amount of influence and leverage to shift the system in that way. You could say that you’re supporting disability access for all grantee programs and projects and have that multiplier effect.

So I’m just curious if you can talk a little bit more about how funders can use their influence and position to expand disability justice beyond their own organizations.

Ryan Easterly: I will start. I think in regards to the questions and our process, the process that the funders use. Like I said, it’s by asking those intentional questions to your partners, and I’d also add as an example of a question in terms of WITH’s process, we formally ask every organization that advances to the final stage of consideration, how does this project address a disability justice framework, and then we go on to define what we mean by disability justice framework, and we ask them to speak to how it’s specifically addressing the experiences of queer and gender-non-conforming people as well as people of color with disabilities. We actually ask that.

We also ask if the materials developed through projects are 508 compliant. Section 508 of the Rehabilitation Act establishes that things should be electronically accessible for folks with disabilities so that’s another way you can talk to the partners, and by asking the questions, help them shape their work.

And then beyond the questions, and I know we’re all going to touch on this, fund the efforts to make things accessible. Fund disabled-led work. Fund organizations that are led by disabled people of color. At the end of the day we know that you see more of what is funded if we as funders decide we like seeing certain models, seeing certain programs, the fact that they’re funded will mean that there’s a proliferation of those types of projects. In addition to the questions we ask being able to shape the work, our funding decisions also shape the work in large ways, so I know we’re all going to continue to touch on this but fund disabled-led work, fund work that’s being led by disabled people of color.

Rebecca Cokley: I would just jump in and say I agree with Ryan a hundred percent, and if we’re truly considering that the work that we’re striving to do needs to be grounded in disability justice, it also means that we can’t be afraid to talk about race.

I’ve had a number of instances in the last couple of years where we’ve dealt with grantees that are grounded in structural White supremacy that have come to us and said, well, we have this amazing disability project, and then they turn around and say something blatantly racist or they’ve said we would like you to give us 20 million dollars to fund police training so that police stop killing autistic kids, and the reality was the way the conversation was grounded, it was grounded in cute, White, disabled kids, and there was no explicit racial justice lens on the work.

If we’re saying we are being guided by the principles of DJ, as a funder we have to start peeling the onion and saying what does the work specifically look like as it relates to Black and Brown disabled kids? Well, this isn’t a race thing. No, but if you’re actually going to say that this is the work that you’re going to do and claim that it’s grounded in these values, it has to explicitly address race.

So being unafraid to have those conversations, especially in moments where philanthropy is largely afraid of having any conversations, I find to be an imperative of the work that we have to do as funders. And don’t call me and ask me to fund cops because I don’t fund cops.

Sandy Ho: This is Sandy and just like for some accessibility and access too, if you are an audience member and you are just listening to what Rebecca was sharing in terms of the example of funding more training for cops, all of ourfaces on this podcast were just completely disgusted and baffled, and so if you’re faced with not doing similar, you know, mind blow reactions, then you’re part of the problem, and glad to have you with us.

So I want to answer this question in two different ways because both Rebecca and Ryan are part of organizations structured a little differently in this philanthropy space so, again, because the Disability Inclusion Fund is housed at Borealis, we get an intermediary so at Borealis, we do not have our own endowment to be spending down. We are raising funds ourselves to move the grant dollars directly to disabled-led organizations.

So in terms of how when we use our influence in that way. I can give two different examples so one is as I am in conversations with peer grantmakers who are coming along in their learning journey in this work, modeling how this is being done, that we all start somewhere, for example, when we’re doing cross-fund work, that it is not just the Disability Inclusion Fund at Borealis but it’s always taking on ableism and disability justice but that the responsibility of this work is across all of the funds at Borealis is one example of how we model for other grantmakers and how this can be prioritized internally.

The second thing is for our grantee partners, what I have learned over the course of the two or so years that I’ve been here is that the way the Disability Inclusion Fund team shows up is also giving I don’t want to say permission but is facilitating more ways of being in relationship to the work for our grantee partners. For example, when we had our winter restorative break, we all had out-of-office messages in our emails that named that rest is important, and then when we came back at the start of the year, so many of our grantees wrote back to us and said, hey, because you did this, we’re actually now reflecting on how we can prioritize rest and reflection and pause for our own teams so I think these are ways that—it doesn’t have to be complicated but just how we are showing up with each other and in community is also saying a lot.

Miya Cain: Yeah, so really this idea of modeling expands beyond modeling within your organization for staff but also that modeling ends up influencing your grantee partners as well, and just yes to needing to explicitly talk about and address race and be unafraid to have these conversations if we’re going to have a disability justice lens, there also needs to be a racial justice lens, and it needs to be overlapping, intersecting, happening at the same time because they reinforce each other.

Let’s talk a little bit about the challenges when doing this work because I’m sure there’s a lot of people listening who are on board, they’re excited, they have been trying to do this work but then they’re also just running into different barriers. Can you share a little bit more about what some of those barriers have been and how you are working through them?

Ryan Easterly: I will start. I think first and foremost, as we’ve touched on when looking in the philanthropic sector as a whole, there is still a permeation of the thought of we don’t do disability. So that in itself I think is a challenge.

I do want to acknowledge that all of us that are part of this podcast today are trying to be a part of the solution as well as all those that are part of the Disability & Philanthropy Forum and the President’s Council and the Disability Inclusion signatories are all coming together and ultimately hoping to change that within the philanthropic sector itself but that is a problem, that still when I reach out to peers in philanthropy to have conversations even sometimes with other health care funders, their initial reaction is, oh, we don’t do disability so I think that’s the problem.

It is also a larger societal issue that sometimes when people think about disability and disability justice, they don’t understand that the framework centers the perspectives and experiences of people of color with disabilities. Disability sometimes gains more traction if the can imagine the cute kids who are oftentimes White when we know the data shows that when we look at the disability community or disability communities as a whole, the communities of color are disproportionately impacted so getting beyond those and having folks understand that when you’re thinking about disability, it does touch on all aspects of life, all aspects of lived experience but disproportionately impacts communities of color.

I would also, as we’ve touched on, just acknowledge that sometimes as funders we love research and we love to kind of know the plans before we start on the journey, and I hope you hear me today when I say that you can still support disability justice without being able to embody all the principles. As Becca and Sandy have alluded to, there’s always going to be some amount of friction but there are organizations right now that are doing the work, and we should still do what we can to actually support the work, meet them where they are, make sure that our processes cause as least amount of burden as possible so that they can continue to do the work that is impacting communities that need it the most.

I would just underline that I know sometimes we let the perfect be the enemy of the good but start this work now, start having conversations with organizations like those on this call or organizations that are part of the Disability & Philanthropy Forum to help you in your learning, but no one does this perfect. WITH Foundation is acknowledged to be a pioneer in regards to disability justice funding and we have been at it a while but there are ways in which our advisory committee continues to educate me and continues to shape our process. We’re still learning. Everyone is learning so just start now and please, please, please, don’t be another funder, don’t be another organization that says, oh, we don’t do disability.

Miya Cain: I just want to emphasize that this is a journey, so we don’t have to have everything be perfect and in place, and just want to reinforce that it’s important to bring that growth and learning mindset and that humility, like you said. With is a pioneer in the field and your advisory committee is teaching you and you’re learning from them all the time and iterating together along the way so really great point.

Sandy Ho: So There are so many challenges. I think there could be a whole podcast series on just where are the challenges. That being said I think one that comes to mind for the Disability Inclusion Fund is when we are talking about participatory grantmaking and trusting folks who are most impacted with the solution, we know for a fact as members of the community that so much of the barriers to access funding has meant most have had to pilot and experiment and try things before, you know, just to get it off the ground before being able to come back to funders, to us and say, hey, you know, this is what we tried, this is what happened. It may not have been successful in the way that we thought it would but would you be interested? That takes a lot of risk and I think for a funder to come to this work, understanding that, as Miya, you said, with humility to learn and really to ask yourself what is so scary about trusting community to lead us forward. What are we leading as philanthropy, as grantmakers, when we say to community, yes, you have the lived experience and you’re doing the work and we’re here to amplify and resource and to lift up the models and programs that work.

So I guess one example, we know that disability justice and disability rights are—we’ve been in communities that originated in California Bay Area and so even as I’m talking with California funders, they’re like mind blown that this is a part of their history. That aside though between 2020 and 2022 the Disability Inclusion Fund received from California grantee applicants alone over five million dollars in grant requests, and as a fund we were able to just meet less than (…) of them, and so one of the challenges is the scale of the requests and the movement and the insight and the innovation that is happening is not being met with urgency I would say among philanthropy, and as somebody who is just inherently impatient, I’m like, yeah, let’s go. We know the people, we know the network, we have folks like us on this podcast and others that we’re—if we introduce to you, let’s start talking and let’s do this work together.

Rebecca Cokley: Building on my counterparts said, I honestly didn’t know what I was going to say which is why I made them go first because I won the nose game. You guys didn’t see us, we were tapping noses.

This is Rebecca. Two things that I think a lot about in terms of challenges is teaching the community what to ask for, teaching our community, teaching disabled people how much to ask for. I quote my big sister and dear friend, Congresswomen Ayanna Pressley, who says we ask for scraps and then are told to be thankful for crumbs, and I think that’s so real for people with disabilities. There’s been a number of times that grantees or potential grantees have come to me with an amazing proposal and then I look at the budget and they’re like, we want $30,000, and I’m like, how the hell are you going to do this for $30,000? There’s no way in hell. How are you paying for people’s insurance? How are going to—that might cover cellphone bills maybe but let’s actually have the conversation—like add a zero, at least a zero.

I think for our community because philanthropy is so new to disability and also acknowledge disability is so new to philanthropy too, there’s some expectation management but it’s not about lowering expectations. It’s actually about raising the community’s expectations and understanding what something costs to do, and so I find myself spending a fair amount of time actually coaching folks new in the space about like, OK, let’s be realistic. What’s your salary? If you’re over 40 in the disability community and you apply for a grant from us, I’m going to ask you if you have retirement savings set up because so many of our elders don’t, and specifically for people on SSI, they’re actually not allowed to keep retirement savings in order to maintain Medicaid and so actually working with our folks to understand like what does it cost to run something and how much should you ask for.

The other piece is actually pushing back on ableism when we encounter it in philanthropy. I’ve sat there and watched funders say, well, of course I’m comfortable funding something that’s led by disabled veterans but not those people with intellectual or developmental disabilities because how are we going to trust them with money. What if they screw up? What if they cry? And I’m like no one caring is like Sargeant John Oates over there who’s a veteran sits and cries, why do you care about this person? Are we literally having this actual conversation in this moment, or I might be a funder saying I might be uncomfortable because the people leading the project don’t speak using verbal communication, and I’m like you read captions at home when you watch Law and Order, don’t you? Like you don’t? Then like what are you doing? You’re doing it wrong. So playing the hokey pokey with the curb cut effect, oh, you like accommodations but you don’t like the people that use them.

Ryan Easterly: And if I can just add to that, and thank you for going there, Rebecca, I think amongst the challenging things and perhaps challenging conversations that we need to have within philanthropy is conversations about whether or not we’re putting our dollars to the most effective ways of meeting our missions.

In the case of WITH Foundation we are a smaller foundation, so our corpus is around 15 million dollars, and when the foundation was established, it was established to exist 70 years so seven zero so amongst the challenging conversations that WITH Foundation had to have is we were thinking about are we putting our dollars to the most effective use in terms of our mission. We had to realize that in our case our typical grant size was $30,000 to $50,000 but to be the best partner that we can be to the organizations doing the work, we made the decision to sunset the foundation so that is ultimately going to enable us to triple the amount of funding that we’re able to provide organizations doing this work because at the end of the day, what’s the point in being a partner but not being as strong or as effective as a partner to just exist for 70 years. Yes, we’re going to close our doors at the end of 2028 but we’re able to support work being done now and especially as a health care funder, it may seem like a lot to say but we are losing lives now. We are losing people’s potential now. We are losing ripples that people with disabilities are able to create now so I think from my perspective it’s important that we as funders have the challenging conversations with ourselves to say are we really putting our money in the most effective ways possible.

I personally believe that many small to medium size foundations, they do need to have intentional conversations around sunsetting, but I do think even for large foundations, what would it look like to imagine, you know, what if we were to say rather than existing in perpetuity, just we’re going to exist for the next hundred years. We need to have these conversations.

Miya Cain: Yes, and just really having those honest and challenging conversations about what’s working, what’s not working. Our goal isn’t to just exist forever. The goal is to address these issues so prioritize disability, let go of the things that aren’t working, and really put the funds to where what is going to make a difference. I know we’re kind of coming towards the end of our time together.

I want to end with this question. Thinking about imagining new possibilities, imagining a different world, as you think about your own work in philanthropy, your partners in the philanthropic space, what is something you most want to see happen?

Ryan Easterly: I’ll start because I have a list. I like to dream a lot, but I think I want us to live in a world in which funders are no longer saying we don’t do disability. I want to live in a world where folks feel comfortable disclosing their disability, and I want to work in a philanthropic sector in which I see many people with disabilities, especially people of color in decision-making positions within philanthropy and also, I’d like to see people with lived experience of disability working in all types of funding. I myself am a Black, gay man raised in the South, was adopted, like I have a lot of different types of lived experiences. I have lots of different types of professional experiences. People with disabilities don’t just have to work in disability funding. I want to live in a world in which they’re doing many different types of funding. So I’ll stop at that.

Sandy Ho: This is Sandy. I’ll chime in to say that I want to be in a place where philanthropy is ready for disability features that is already here and in the now. When you look at all of—even prior to COVID, all of the accommodations or requests around remote access that folks have been asking for and using regularly, all of a sudden it was like, oh, COVID hit, because it now impacts the rest of the majority, we’ll jump on the bandwagon. What I want to go on record in saying this here and now is COVID is not over, and when we think about all the innovations that folks have been bringing including within philanthropy, right? The flexibility, the less burdensome applications, the reporting, being more responsive during crises, that these are all of the factors that are going to continue to be mass disabling, and so when we think about what is going to be happening in the field in the future, it’s like let’s not just be a sector that meets the urgency of now but also what does it look like to be on the other side of ableism and to be in real partnership with disabled folks in the future.

Rebecca Cokley: This is Rebecca. I just want to acknowledge that capitalism Columbused telework like, oh, look, there’s this thing parked over there, it is called Teleworks, it is amazing, we should all do this. Assholes, the disability community has been asking for Teleworks for decades and it’s so great that you’ve discovered it, and now conveniently forgotten it. So I just needed to say that. What do I most want to see? I want to be in a boardroom with a bunch of foundations where the excuse that they—for why they haven’t hired a person with a disability is not that, well, Becca, we can’t find a you, a Ryan, or a Sandy. I want the response to be we know we have qualified people with disabilities inside our institution and we have failed them, and so we are going to commit to transforming our organization and lifting up and empowering the voices of disabled people that already work here who we’re not providing—we’re not living up to our own high expectations when it comes to how we work with them.

Miya Cain: Thank you so much for each of those visions. I think it’s just really important to take that step back and think about what’s possible because these things are within reach, you know? Being more responsive, transforming our organizations, having it where people don’t feel uncomfortable sharing their own disability or having flexible and accessible workplaces. All of these things are possible, and like you pointed out, Rebecca, they are things that people were asking for that everyone said wasn’t possible and then suddenly when people needed it, when more people needed it, it was like, oh, wait, actually this is something that we can all do very easily and now everyone’s doing it so I think there’s something in all of this about being less afraid to try and to imagine something different and seeing what happens, and bringing back that spirit of being, you know, the humility and being willing to learn but also being honest about what is and isn’t working so that we can actually fix it, change it. So thank you for those visions.

My last question here is just based on our conversation today, is there anything else that you would like our listeners to think about, anything we might have missed or any just last thoughts that you want to leave people with as we wrap up?

Sandy Ho: This is Sandy. I will chime in to say I would be really remiss if I did not talk about the Disability Inclusion Fund’s Joy grant, and I’m looking exactly directly at Ryan right now as I say these words but there is a part of a possible future that again is not that far out of reach, the notion that we can support our community and organizations doing the work in ways that are not just because like we expect them to produce and to constantly up and grind of productivity, and so this notion of the Joy grant is really to support our organizations and their staff team that we know have—are not just a different line but have minimum capacity to come together to experience collective access to joy, that idea that disabled people can have joy is deeply politicized, and this is one way that our sector as grantmaker can be a little bit more creative and meet where folks are at so, yeah.

Miya Cain: Yes, we can all have joy. Thank you for that, Sandy.

Rebecca Cokley: This is Rebecca. I would say that I have a message to any CEO of any major foundation, we’re waiting for you to self-identify. We will throw you a party. We will have a DJ that only plays Beyonce and Prince if you want. We’re down for that. We need people in senior leadership of philanthropy to serve by example. We know you’re there. We promise we won’t yell at you. We may ask you why it took you that long, but we won’t ask that until we’re two or three years in and after a couple of margaritas but we’re here and we’re waiting for you. We will meet you where you are, and we will bring you along with us.

Ryan Easterly: And I guess I would add start funding now. Be a part of this journey now, not later. There are organizations within your communities, whether it be your local center for independent living or your university for excellence in developmental disability, there are organizations that will support you in your learning journey as it relates to disability inclusion and disability justice. Start the journey now, not later, and then for those of us working in philanthropy, know that the Disability & Philanthropy Forum exists. If you’re looking for a place to help support you in moving your organization, please look to the Disability & Philanthropy Forum. Also if you’re a staffer and you’re struggling with feeling comfortable in disclosing your disability, the Disability & Philanthropy Forum is another place where you can come and meet folks and figure out what works best for you and how you can put yourself on a path to feel like you can disclose so I’ll leave it at that.

Miya Cain: Thank you so much, Rebecca, Ryan, and Sandy. The three of you are doing such impactful work and this was such an inspiring conversation. Let’s just—after that call that we start now, that we don’t wait. The urgency for change is upon us, and there are real lives, people’s lives in the balance every day, and so by having this conversation, by doing this work, we are creating the world that we each want to see together so thank you so much.

(Outro) And this closes out this episode of the Collective Impact Forum podcast. If you are interested in learning more about what was discussed, you can find links to resources in the footnotes for this episode. And if you’re enjoying all that we share at the Collective Impact Forum podcast, we encourage you to rate us on your preferred podcast platform, and share your favorite episodes with colleagues.

We would like to acknowledge that this episode was produced and edited on the unceded, traditional lands of the Coast Salish people, including the Duwamish, Suquamish, Stillaguamish, and Muckleshoot tribes. We honor with gratitude the land itself and the past, present, and futures of these tribes.

The Intro music for this episode was composed by Rafael Krux and our outro music is composed by Kevin Macleod.

In Forum news, we’re excited to share that registration is now open for our upcoming Collective Impact Overview online training that will be held on August 22. This is an excellent foundation training and is specifically geared towards anyone who is new to doing collective impact work and is looking for an explanation of the approach. If you are interested, please visit the events section of collectiveimpactforum.org to learn more and register.

This is Tracy Timmons-Gray, Associate Director here at the Collective Impact Forum, and your podcast producer. I want to say thank you so much for listening, and we look forward to connecting with you more in our next episode. Until next time, let’s keep working towards collective impact.