Behind the DiD Project: One Story About Secrecy, Silence, and Stigma at Work in Fundraising and Philanthropy
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:
I 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.
Reclaim Labor Day When the First DiD Stories Go Live on 9/2/19
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.
Welcome to the Disabled in Development (DiD) Project
Disability in Development (DiD) Project: Telling Our Truth to Transform Philanthropy
Connect. Belong. Succeed.
The Disabled in Development (DiD) Project is seeking out non-profit staff who hold fundraising responsibilities, and development and philanthropic professionals already in the field – some for decades – for their constructive advice on how to put inclusion principles into practice.
DiD is our place to document advances in inclusion and to testify to ableist structural barriers that we encounter and that all-too often halt our career advancement or force us out. Your stories are important.
Quick Links to More Information
Philanthropy has been changing for the better over the past 2 years or so, when it comes to disability and inclusion. The numbers alone indicate dramatic need for change: Just 3% of philanthropy identifies as disabled and funding for global disability civil and human rights advocacy fell by 23% between 2011-2015.
Getting more openly disabled people at philanthropic tables is the right thing to do. But being at the table isn’t the goal. Our representation matters because of our wealth — of expertise, skills, and relationships. DiD’s goal is to make philanthropy more powerful.
We’re all stronger when we connect, belong, succeed.
To achieve that, DiD will help improve philanthropy’s understanding of what ableism is, and how it — not disability — causes exclusion and inequity. This will strengthen philanthropy’s capacity to fight ableism. Philanthropy needs disabled, chronically ill, and aging people in order to become a better, more powerful force for social change.
DiD provides an accessible outlet for making disability more visible and less stigmatized in the philanthropic sector, increasing the sector’s access to our profoundly marginalized expertise.
Our successes deserve to be known and built on. Our advice should be heard. The barriers that we deal with are often embarrassing, sometimes humiliating, and just as frequently, absurd and infuriating. They make great stories. This is our time to tell them.
How You Can Participate in the DiD Project
Here’s how you can share your expertise and experience through Disabled in Development:
See if it’s for you: Check out the process (below), preview the questions.
Send questions or confirm with me at firstname.lastname@example.org: 1) that you’d like to participate; 2) how you’d like to be compensated (info below); 3) your decision about anonymity; 4) that you accept the Agreements.
I email you a link to a Google doc that only you and I will have access to, where we’ll complete your interview/story.
An Open Letter to Advocacy Funders: #FundDisAdvocacy Because Disability + Ableism = Structural Discrimination