Want in on the conversation about ableism? Check out what disabled advocates, civil and human rights activists, and philanthropic leaders had to say at the Twitter chat on 10/12/18 about philanthropy and inclusion. Then make your voice heard at #FundDisAdvocacy.

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Foundation funding for disability advocacy dropped 23% between 2011-2015. Disabled people were the only group to see a decrease. Most funders are “aware” of disability but do they see ableism and structural discrimination? How do we make funders see disability civil and human rights as areas of actionable, urgent advocacy? A first step is recognizing disability as a constant but hidden set of variables in nearly all formulas for civil and human rights. 

I’m writing to you in my capacity as a community organizer – which is another name for a social justice fundraiser.

I believe you and I share common ground on the importance of advocacy:

We know that the great civil and human rights gains of the last century, envisioned and organized by the grassroots, were built to last through the courts and legislation, and they will continue to be the battlefields for preserving them.

I’m writing because disability civil and human rights advocacy is missing from your funding portfolios.

The first step in changing that is frank communication.

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When you do not explicitly say “disability” in funding advocacy, you send a message to us: Deny, disown, and downplay your disability identity. That denies all marginalized communities access to our hard-won legal tools and, worse yet, our expertise in using them.

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You may understand this letter, at first, as pertaining to a discrete group: disabled people. But it is a fundamental mistake to think that civil and human rights for any community can be fully achieved if we neglect, forget, or disregard such a basic human condition as disability and allow it to be the “natural” cause of poverty and abuse. If we are not safe or free to be vulnerable, then we cannot call ourselves safe or free. Our society is not safe or free.

Disability is still not is recognized as the constant but hidden variable in nearly all formulas for US civil rights and global human rights.

Including disability as a given factor in most people’s lives is essential to successfully advancing the human rights of people who are members of minority communities; survivors of violence in the home, the school, and the street, and/conflict zones, and veterans; immigrant and refugees held in detention, incarcerated people, people coerced into institutionalization; people who live with chronic ailments and have survived catastrophic illness, neurodiverse people; people who are young and old; male, female, and anywhere on the gender spectrum.

While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”

Refusing to Name Disability Is a Message of Exclusion

Connecting my own disability to civil rights was an awakening I owe to the brown and black, and queer leaders, predominately lesbian, who I worked with through the 90s in a women’s free clinic on Haight Street in San Francisco.

This was long before the term “ableism” came into use. It was my Chicanx boss and Black CEO who talked me into applying for, and then funded my work in, the Women’s Health Leadership program where I developed our agency’s first inservice on the politics of disability in 1996.

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I’ve never encountered a foundation that lacked a basic understanding of how sexism results in structural gender discrimination, and how that discrimination creates the need for actionable, urgent advocacy. But when it comes to advocacy funding for disabled people, decision-makers in foundations too often seem to lack an understanding of how ableism results in structural discrimination, however “aware” of disability they are.

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If there are darn few politicized disabled fundraisers like me, there are even fewer who are also people of color, have invisible disabilities, have not been shut out of places like college, and are not forced into poverty by a lack of accessible workplaces and/or restrictive public benefits.

I have the rare privilege of being safely “out” at work as a significantly disabled employee and in having achieving a major career goal in 2011 when I finally landed a job that focused on disability civil and human rights advocacy. Today I’m using my privilege to speak directly to you.

As allies in social justice and equality advocacy, where I see us not opposed, but sadly distant, is in our understanding of disability as an advocacy area that is worthy of your funding.

If you told me that your advocacy funding does, in fact, benefit disabled people, I wouldn’t wholly disagree. Communities overlap as disability is inherently intersectional. But you do not name us.

By not naming disabled people as the intended focus of funding, funders keep disabled advocates marginalized even within civil and human rights circles that understand the value of legal defense and policy advocacy.

When you do not explicitly say “disability” in funding advocacy, you send a message to us: Deny, disown, and downplay your disability identity.

That denies all marginalized communities access to our hard-won legal tools and, worse yet, our expertise in using them.

The Distance Between Us is Not a Gap. It’s a Canyon.

I’ve been a fundraiser for over 25 years and money is the measure of my work so I sought the measure of the distance between us in percentages of advocacy funding, worldwide. What I found confirmed my anecdotal experience: We are growing farther apart.

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Our program officer said the board was a small group who simply was not familiar with, and did not understand, disability civil rights.

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Foundation funding for disability advocacy dropped 23% between 2011-2015 and disabled people were the only group to see a decrease.

By contrast, advocacy funding for women and girls, the focus of much of my past work since the early 90s, increased by 43% over those same years. By my reckoning, a 66% point difference is no longer a gap but a canyon.

I’ve never encountered a foundation that lacked a basic understanding of how sexism results in structural gender discrimination, and how that discrimination creates the need for actionable, urgent advocacy.  But when it comes to advocacy funding for disabled people, decision-makers in foundations too often seem to lack an understanding of how ableism results in structural discrimination, however “aware” of disability they are. You may find a singular disabled person inspirational but that will not lessen the distance between us.

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Disability advocacy is about fighting injustice that kills or injures disabled people with bullets from police, restraints in schools and facilities; violence in the home, on the street, in institutions and prisons; and through denial of basic healthcare and supports, and the housing crisis and homelessness.

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That will only change when my saying the word “disability” to advocacy funders no longer seems to trigger an immediate, unstoppable association with clinical or quality of life projects that effectively “disables” any conversation about advocacy or, even worse, unleashes the trope that disability = charity.

The trajectory of one proposal is emblematic of the canyon separating advocacy funders from disability advocates.

We had made a strong connection with a program officer who said we were an excellent program fit. Then our proposal was declined.

Our program officer said the board was a small group who simply was not familiar with, and did not understand, disability civil rights.

The foundation, who focuses on youth education issues, funds organizations that serve foster youth, but who don’t use the word “disabled.” Considering that at least 30-40% of foster youth have disabilities that make them eligible for special education, funding advocates who are experts on both disability and special education rights and responsibilities seems like an effective strategy.

Disability advocacy is not just about the very real barriers faced by people like me – white, cis-gendered wheelchair users — as it has long been increasingly about the injustice faced by disabled black and brown people, very much including immigrants; people who are trans; people who are neurodiverse; people who have invisible disabilities, traumatic histories, and untreated mental health issues.

Disability advocacy is about fighting injustice that kills or injures disabled people with bullets from police, restraints in schools and facilities; violence in the home, on the street, in institutions and prisons; and through denial of basic healthcare and supports, and the housing crisis and homelessness.

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I had simply lost my grit for trying to get beyond the courteous finality of, “Sorry, we just don’t do disability,” from civil and human rights funders. That failure’s on me. I stopped being an activist.

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It’s incomprehensible to me how the constant of disability discrimination can be so underfunded when it presents such urgent and actionable areas for advocacy. I jokingly say that I have “the crip sense” because I see disabled people. Everywhere.

I see us in the migrant children who have been traumatized by being stolen from their immigrant parents. I see us in the lead-poisoned children of Flint, Michigan. I see us in the refugees, injured by wars and climate change. I see us in the children, women, and men who live with effects of sexual assault and harassment. I see futures that require powerful advocacy now if these disabled people have any possibility of healthcare and education access, to name just two needs.

Disability Advocacy Remains Underfunded in the  Birthplace of Disability Civil Rights

Global funding numbers aside, I informally explored the terrain closer to home and reviewed the grantees lists for three advocacy funders in the Bay Area, the birthplace of disability civil rights.

• One, following a thoughtful process of narrowing their grantees list, had not funded a single disability advocacy group within the past 18 months.

• The second, a funder I had gone to in the past for support for gender rights, had not funded any disability advocacy organizations within the past 2 years. A cordial call said disability was not an area of interest.

• The third, a public foundation, had abruptly dropped disability rights from their social justice agenda some years ago. No disability rights groups were listed in their 2017 grantees list nor did the word “disability” appear once in the descriptions of the projects that were funded in 2017.

• Then I played a bonus round and checked out another highly influential foundation that is allied with gender issues and agenda-setting. Disability was not included as an issue area nor were any disability rights organizations included on their most recent grantees list.

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If a foundation wants to transform the world with disabled people, its work must begin from the inside out, across the board, top to bottom. It must become a workplace where disabled employees are not blocked from entry, retention, and promotion by internal access barriers and external structural discrimination.  An inspirational speaker or even a siloed program is not going to get the job done in unlearning ableism. 

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Issue priorities come and go so I went back to the global 2011-2015 data. I considered the possibility that disabled people would at least be top recipients for healthcare advocacy funding, as health care is the area that many people assume disability is synonymous with.

Instead, disabled people ranked fourth in total global funding in 2015. Women and girls received about $20 million more in grants, with children and youth in the overall lead.

Unlearning Ableism Will Be a Transformational Cultural Shift in Philanthropy

I’ll be candid: I had gotten so demoralized in the past two years that I stopped expecting much in the way of foundation funding.

Despite established relationships with True North Foundation, Gill Foundation, Herb Block Foundation, The California Endowment, Special Hope Foundation (now WITH Foundation), and The Mayerson Foundation, I stopped expecting much in the way of foundation funding.

I had simply lost my grit for trying to get beyond the courteous finality of, “Sorry, we just don’t do disability,” from civil and human rights funders. That failure’s on me. I stopped being an activist.

But I slowly, skeptically, started to have some hope following the Ford Foundation’s still-recent evolutionary leap in acknowledging its own gap in funding for the fight for disability civil and human rights. When our organization was awarded its first Ford grant last year, it was a pivotal moment in our nearly 40-year history.

That said, Ford cannot single-handedly fill the sector’s gaps, much less its canyons. Just as you, the foundation funder, are wary of becoming my sole source funder, I am wary of Ford becoming your sole fix-it funder for the lack of disability rights advocacy. Ford’s action should be a lodestar you follow, not a signal flare that the work is done.

If a foundation wants to transform the world with disabled people, its work must begin from the inside out, across the board, top to bottom.

It must become a workplace where disabled employees are not blocked from entry, retention, and promotion by internal access barriers and external structural discrimination.

An inspirational speaker or even a siloed program is not going to get the job done in unlearning ableism.

This is about repositioning disabled advocates as leaders who bring assets, rather than only a collection of needs, to your foundation, to your philanthropic community.

These are the transformational changes I would like to see funders make within their own foundation community:

• Significantly increase funding for disability civil and human rights advocacy

• Create accessible entry points for hiring politicized disabled staff who reflect the diversity of the disabled population in areas that include class, income inequality, and experience with living on public benefits

• Compensate and credit the multiply-marginalized disabled people who contribute to your work, particularly disabled women of color

• Require that disability-related advocacy work you fund be led by disabled advocates and organizations governed by disabled leaders
  

• Require that disability-related advocacy work you fund be fundamentally intersectional in approach, not only when it’s considered politically “safe”

• Foundation metrics that are developed with disability as a factor and variable

• Increased disability cultural fluency in the philanthropic sector, in general, including the effects of structural poverty caused by benefits and their income limits

• Increased understanding of how damaging the charity model is to advancing disability rights

• Dismantling of barriers in the philanthropic sector itself that make it impossible for a disabled fundraiser to both succeed professionally and contribute disability cultural fluency

I don’t expect to have my funding requests granted. I do expect an equal opportunity to make my funding case for disability advocacy. The first step is understanding the disability community–and the activists who embody it–not as charity, personified, but as justice, denied. Partners. Social justice co-conspirators.

In solidarity,

Ingrid Tischer

Director of Development, Disability Rights Education & Defense Fund (DREDF)

Faculty, California Asset Based Community Development (former)

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A Crip in Philanthropy (CRIP) is an occasional column about the realities of working in the philanthropic sector as a white, disabled fundraiser for cross-disability advocacy and other social justice issues in community-based organizations. They are the author’s private opinions about physical and attitudinal barriers to success and opportunities to contribute disability cultural fluency.