Behind the DiD Project: One Story About Secrecy, Silence, and Stigma at Work in Fundraising and Philanthropy

Underwater photo view of iceberg with beautiful transparent sea on background

Those of us who can tell our stories openly about disability, chronic illness, and aging in philanthropy and fundraising are the tip of the iceberg. Our numbers are small compared to those who feel compelled to keep that aspect of who they are hidden under the water-line. Photo credit: Ales Utovko

I’m not sure when I started to notice the pattern.

I’d raise some disability access issue at work and, not long after, a colleague would tell me privately that they had a disability and/or a chronic illness. They didn’t feel safe disclosing it and, therefore, couldn’t ask for any accommodations for it.

These kind of workplace stories are a big part of what’s behind the Disabled in Development Project and how, when viewed collectively, they add up to system failures and structural ableism that is well beyond any individual’s ability to “overcome.” While DiD’s also about sharing stories of the significant progress toward inclusion being made in philanthropy and fundraising, giving space to testify openly about ableism in our own sector is essential for context. 


The situation would be making doing their job harder and they appreciated being able to vent to me. Would I please keep it a secret? Of course I would. And I did. Even when having more numbers on my side would have helped me argue that this-or-that barrier solution should be a priority, despite time and money limitations.
I remember this happening as far back as the late 90s and the confiding confessions continue to this day, socially and at meetings and conferences, though not in my current workplace, DREDF.

I’ll describe one particular situation but keep identifying details out as best I can. This whole episode still bothers me:


Multi-colored hexagonsI worked with a fundraising teammate who had a different but complementary skill-set from mine. They were very good at what they did, from the outset.
We had a superior, also newish, who was a toucher. As in, a touch on your arm for emphasis, that kind of thing. My teammate told them early on that they did not like to be touched and please don’t ever do it, it was very upsetting to them. (I witnessed this.)
Our superior kept right on touchin’.

Part of any system is access to the system. If access is blocked by stigma, that is itself a system problem.


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Reclaim Labor Day When the First DiD Stories Go Live on 9/2/19

Coming Soon!

The first DiD stories will go live on Monday, September 2, 2019.

Why that day? Because Labor Day has many wonderful traditions and history associated with it. But one of them wasn’t so great for disabled people or fundraising:

For decades, the MDA Labor Day Telethon was where Jerry Lewis spread such damaging messages about disabled people as, “My kids cannot go into the workplace.”

Yes, that’s the past and name-checked just those of us with muscular dystrophy. But the charity model it came from is still all-too alive and well in fundraising and philanthropy.

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An Open Letter to Advocacy Funders: #FundDisAdvocacy Because Disability + Ableism = Structural Discrimination

 

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.


A Crip in PhilanthropyFoundation 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.

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.


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.

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