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Understanding Disability-Inclusive Grantmaking in a Broader Social Justice Context

What do funders need to know about how disability connects with their primary funding areas (e.g. health equity, racial equity, social justice, education, the arts)?

Disability is both an event and an identity in people’s lives. I would like you to, for the most part, regard disability as an array of diverse populations and not a problem itself. Disability itself is a fluid variable. Sometimes disability is a medical condition, for example, that is itself a problem but one that is exacerbated by health inequity caused by inaccessible medical services, and amplified by structural racism.

If you fund work that addresses human beings, disabled people are already in your primary funding area. You’re simply regarding them through the lens of another identity.

If your foundation’s objective is to make the world a safer place for vulnerable people in almost any way, a focus on disability and ableism will connect your objective to people in the most marginalized communities with needs that are the most unmet.

You will be homing in on the people in almost every community who are expected to live in poverty, to be homeless, to be the target of violence and abuse, and whose premature deaths are considered expected, natural, and a function of who they are, not a function of our society’s response to them.

Aging, illness, trauma, mental health, pregnancy, addiction, violence, domestic abuse, employment, education, health, transportation, housing, incarceration, juvenile justice, prison reform, immigration, war, the effects of climate change – are all exacerbated and/or caused by ableism. Chances are that means disabled people are a significant portion of your target population.

Disability-inclusive grantmaking means you will begin to make more progress toward your grantmaking objectives as a whole when the unmet needs caused by ableism are no longer dragging the rest of your work down.

As a development director for a disability-focused organization, what do you most want funders to understand?

Disability-related work is about culture change, not just applying technical assistance. For 25 years I’ve been wracking my brain over how to get the right kind of technical assistance to funders, the right information that would be so compelling they will prioritize disability rights and access. I’ve responded instantly to requests for help. I certainly haven’t been alone in this. I would describe this dynamic as taking place in a culture of compliance. Meaningful culture change in the funding world is about leveling up from a culture of compliance to a culture of access.

A culture of access is one that treats me as an essential co-conspirator in social justice work. I belong. My absence is not an option. I have something to give. The change I bring benefits everyone. We relate as people who both want to belong.

Creating a culture of access requires technical expertise in fundraising and grantmaking as much as it does leadership in advancing disability culture. If you do not prioritize this, it will conflict with your overall efforts to center disability inclusion. Instead, you’ll be tacitly condoning philanthropic behavior that perpetuates objectification of disabled people in the name of raising money and then expecting our gratitude.

I would rather we struggle to ask the right questions than get fast but superficial answers. This takes courage because sometimes it means you will have to know something must be done differently but not have a clear picture yet of what that would look like.

I’ve long known intellectually what a disabled fundraiser is up against in the profession. But, like many other marginalized people, I still felt responsible for producing results – or failing to – while coping with three areas of structural ableism in grantmaking itself that reinforce each other:

• Barriers (both structural and attitudinal) that limit relationship-building and career progression
• Silence on ableist tropes and norms that continue to define philanthropy’s work through the charity model
• Invisibility in funding portfolios, as a population and issue area

I would like you to hear how profoundly emotional my career in development is and has been. In many respects fundraising for a disability rights organization requires me to produce results while constantly being in close proximity to the stereotypes, tropes, and practices that dehumanize me. Putting that aside in order to get on with the work has taken a toll.

This work is not just about information exchange. It’s about candid conversations and a reworked power dynamic between grantor and seeker. What I question is whether information without relationship-building and informed critique can generate the necessary peer-to-peer pressure on a values level that produces real systems change.

What questions should funders be asking themselves to ensure their work is meaningfully disability-inclusive?

In terms of your grant metrics: Are your indicators of success inclusive? Here are some specific examples:

• If education is an issue area, do your benchmarks reflect the meaningful achievements of students with disabilities, some of whom are not college-bound and/or face barriers to such basics as literacy in their schools? When it comes to meaningful change are you aiming for behavior change on the part of schools and districts as much as you are on student performance?
• If healthcare is an issue area, are your desired outcomes focused solely on changing disabled people or do you include changes in healthcare systems and facilities as evidence of change?
• If asset building is a program area, are your benchmarks based on experience with the structural income inequality/poverty required by most public benefits systems? Will you commit your foundation’s clout and material resources to dismantling systemic barriers that no amount of financial literacy or bootstrapping could surmount?

In terms of your foundation’s own data collection: Do you collect disability data in your own grantee reports?

And in terms of your foundation’s commitment to representation: Do you require that disability-related work be led by disabled advocates, that disability organizations be governed by disabled people, and that they are fairly compensated?

What do we need to create truly transformational change within the philanthropic sector?

• Trust: Eliminating the norms of distance and deference between disabled fundraisers and funders because more equitable relationships will support the transfer of knowledge of how ableism operates in grantmaking, fundraising, and other philanthropic practices
• Justice: Continued decoupling of individual wealth and high social status from presumed decision-making positions of authority and agenda-setting in foundations, particularly at the board level
• Integrity: Instituting a philanthropic-sector code of conduct and watchdog systems to responsibly critique unethical and dehumanizing fundraising practices

Social justice philanthropy and fundraising are careers that are underappreciated as viable paths to leadership and power for disabled people but there are still too many barriers and too few role models. Another issue I consider part of my brief as a disabled fundraiser is advancing the idea, No funding about us without us.

But there are real challenges. Many of the answers I’ve given to grantmakers’ questions about access and terminology amount to, “Talk it through with disabled colleagues or activists.” And that’s a conundrum when there’s such a lack of representation and relationship-building. How does a funder have knowledgeable people who they can feel comfortable going to? How do you even know who’s out there and how they’re regarded?

Given that, and when there’s only an estimated 2% of people in philanthropy who identify as disabled, and disability cultural fluency is prized, it’s time for funders to build relationships with disabled fundraisers who work for disability organizations. Trust that we’ll value the relationship – and the work – enough not to pitch you inappropriately.

When we talk about what transformation + philanthropy is, I feel we must frame others’ understanding of it by talking about it much more as radically redefining an ethos, rewriting a narrative, and breaking the charity model than as the comparatively straightforward discussions about access how-to’s, inclusion, and compliance. It’s about finding ways disabled fundraisers can contribute to transforming grantmaking with you as trusted sources for informed critique and values gut-checking for the betterment of all.

Efforts to hear disabled voices, see us, and do the sometimes-daunting work of learning about issues, terminology, and access are laudable. But there’s a deeper layer in philanthropy that involves coming to terms with its history of the charity model, core power dynamics, and relationship with poverty and consent. That’s an uncomfortable thing to grapple with. Intentionally involving the very people who know the terrain as few do – personally and professionally – would be deeply meaningful.

For more insights on how philanthropy can move forward, be sure to read part one of our conversation with Ingrid.

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