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.

My teammate repeated their request. Our superior – the fundraiser who said they were great with people – treated it as if it were a joke.
At that point, I wanted my teammate to hear someone, even if it was just a peer, speak up. I said to the toucher that they should take it seriously. They said it was really hard to remember and that it was just who they were. A toucher. A senior staff-person happened to observe this and they mildly admonished the toucher who, again, laughed in response.
My teammate asked if we could talk confidentially.  Over a series of conversations during which I mostly listened, they explained that they’d long had [a profoundly stigmatized disability] and, despite now having the tools and support to re-enter the workforce, our superior’s touching was causing them to lose ground, coping-wise, even outside of work.
The senior staff-person had not sought them out after witnessing what was going on and they interpreted that as a coded message to not bother them about it.

I’m pausing here to be clear:

I understood then and I understand now why going to our most senior management was just not an option for them: Stigma.
I don’t like it. But I get it. My teammate was suffering the effects of a most basic violation of boundaries by a superior at work. If that could be tolerated by senior staff, why should they have trust with regard to disclosing their highly stigmatized disability?
Of course our organization had policies and systems for dealing with unwanted touching. Complying with workplace law was a given. But there was here a gap between disability inclusion principle and practice, similar to the disconnect with policies and practices related to gendered issues like parental leave, as I learned while working as a fundraiser for Equal Rights Advocates.
Also:  Stigma is a complex dynamic that has a foundation in reality. Disabled people are trained by our culture to reject disability, to view it as the enemy, the stranger within. One of the most insidious things about stigma is that its pain is blunted by you rejecting your own disability as a legitimate part of who you are. Disabled people who have made progress in integrating their disability into a healthy sense of self become the people who feel stigma’s effects more keenly. Internalized stigma dangles less pain in front of you – an understandable temptation – in exchange for you foregoing an integrated sense of self. In other words, disabled people are set up to forgo what is objectively defined as “mental health” or self-actualization. In my opinion.

But back to the story:

Multi-colored hexagonsMy teammate told me that our senior staff’s lack of follow-up indicated to them that our workplace simply wasn’t prepared for them to be there.  Someone with a visible, less-stigmatized disability like me – sure. But not them. Which was dead-on right, all around. It wasn’t their being unprepared, it was our organization’s. I told them that having that insight alone made them wicked impressive as a fellow disabled colleague, in addition to their fundraising skills.
And then they quit.
One day they were gone. I have no idea where they are. I consider them to have been forced out of their fundraising job. They had skills that, in my experience, aren’t the easiest to find. Maybe they found a better place to build a successful career. But maybe not.
The toucher left soon after for a more lucrative gig. You could argue that it’s sad my teammate didn’t stay, because their problem would have been gone. But I don’t think that’s true because “the” problem wasn’t the toucher.
The problem was that our organization’s systems failed to protect my disabled teammate’s right to a safe workplace and disrupted – at minimum – their career. For all I know, this could have affected their long-term ability to earn a living.

But the organization’s systems could have protected my teammate, right? Why didn’t they use them?

Yes, in the US there are both federal and state laws and regulations that protect our disability rights in the workplace. Essential, hard-won, and valued by me. But while they’re the backbone of an organization’s systems, they’re not the entirety of it.
If you can’t disclose your need of this system  – because of fear, for example –  the strongest system can’t protect you. As it couldn’t protect my teammate, who didn’t feel safe disclosing their disability in order to get senior staff to take their situation more seriously.
Disability stigma was blocking their access to our organization’s system for such a complaint. Part of any system is access to the system. If access is blocked by stigma, that is itself a system problem.
This is not “a flaw in the law.” It’s a foreseeable problem. If an organization can’t see it, that’s a flaw in their systems they should at least be aware of.
A better system in an organization is one that proactively addresses the built-in barrier that secrecy, silence, and stigma present to disclosure and requests for accommodation.
This could involve developing and maintaining an organizational culture where disability is normalized and respected both as a “private medical matter” and an “anti-ableism civil rights matter.”
It’s not in one person or department’s domain, which is good, because that can allow for checks and balances. As I’ve said elsewhere, “Systems are stronger and more trustworthy than the best-intentioned individual.”

Want to do some stigma-busting around disability, chronic illness, and aging in fundraising and philanthropy? Contact me to become a DiD Storyteller:

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

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