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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Welcome to the Disabled in Development (DiD) Project

Disability in Development (DiD) Project: Telling Our Truth to Transform Philanthropy

Connect. Belong. Succeed.

Access icon in blue and whiteThe 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.

HERE’S WHAT’S UP, ADVOCACY FUNDERS: You, as part of the incredibly influential philanthropic sector, need diverse disabled fundraisers who are activists fluent in disability culture, politics, and movement history if you are going to achieve inclusion. That means race, class, gender, and LGBTQ discrimination are ALWAYS part of your cross-disability work. A disability organization that says it’s not “strategic” to publicly confront racism or transphobia that devastates disabled lives is not fighting for disability justice. Period. Your first step is realizing that transformation begins within your own organization: ✪ Does your foundation have any “out,” disability culturally competent program staff? ✪ Are your disability-related messages still communicating “charity” instead of justice? ✪ Are your metrics for disability-related projects appropriate? ✪ Do you require fundees to be led by disabled experts in their field? ✪ Are disabled people leading and informing the foundation with regard to work being done in disabled people’s name? If you’re funding other civil and human rights groups, disability justice advocates should be in your portfolio. www.talesfromthecrip.org

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.

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The DiD Project Includes Disability, Chronic Illness, and Aging

Disabled, Chronically Ill, and Aging People’s Representation Matters in Philanthropy and Fundraising

Our expertise and our stories can transform philanthropy and fundraising 
Disabled people, chronically ill people, and aging people can be a powerful coalition in philanthropy. But stigma is also a powerful force that keeps us silent, invisible, and isolated from each other – some of us, for decades. I’ve been an openly disabled fundraiser in the Bay Area for 25 years and I want things to be better for the people coming up.
I want the many people who have quietly persisted in philanthropy and fundraising for years and decades to be included in the equity work happening now.
Telling the truth about work and life by telling our stories is how we connect, belong, and succeed in philanthropy and fundraising.

Do you work/volunteer in philanthropy, work as a development non-profit professional, or hold fundraising responsibilities in your non-profit senior-level position on the staff or board?

Do you also live with one or more disabilities, chronic illnesses, and/or aging-related issues? (The term “disability” need not be used by you but here is used as a catch-all word that includes learning differences, neuro-divergencies, addiction/recovery, and mental health issues.)

If so, philanthropy needs you! Your knowledge is an inside track for how to put disability inclusion principles into practice in the philanthropic sector, as a workplace and social justice force for ending ableism.

Connect. Belong. Succeed.


Contact me to become a DiD Storyteller: Ingrid@talesfomthecrip.org

How You Can Participate in the DiD Project

Here’s how you can share your expertise and experience through Disabled in Development:

First Steps:

  1. See if it’s for you: Check out the process (below), preview the questions.
  2. Send questions or confirm with me at ingrid@talesfromthecrip.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.
  3. 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.

Then:

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Compensation and Agreements Between You and the Disabled in Development Project

Agreements:

  • I’ll be grateful to you and, as a gesture of thanks for your time and expertise, I’m offering $40 to you through an Amazon gift card or a contribution in your honor to the organization of your choice.
  • None of your answers to the questions below will appear without your permission in anything I post publicly.  
  • You can participate anonymously and use general descriptions for Job Title and Organization, for example.
  • You’ll provide selected specifics at your discretion, rather than try to convey your entire history or the entire details of a situation.
  • You won’t share any information with me that’s connected to an administrative or legal case that you’re involved in and that’s open.

Preview Sample Questions

Want to see a sample of the DiD’s All About You and All About Your Experience sections? Of course you do!

REMINDER: You control what you share. We communicate privately and nothing goes public without your permission.


The ALL ABOUT YOU section gives context for your stories section. Most questions can be answered with Yes, No, N/a. Longer answers are welcome but not expected.
Name or Anonymous:

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