Long before I became a fundraiser with muscular dystrophy, I became a sibling to two nondisabled brothers. Stuff I Know: Access to funding is an equity issue. If it’s an honor for kids with disabilities to fund their own health care, then let’s have all kids be poster children. Also: While my lizard brain loves the BS that I, the disabled child, “taught my parents what love *really* is,” MDA telling siblings this during the Telethon is a lousy thing to do. As fundraisers and humans.
Stuff I Know I Know As a Fundraiser Who Has Muscular Dystrophy
With thanks to everyone’s brilliance in the 10/17/20 #EndTheTelethon Twitter protest and to Dominick Evans for leading our response, which you can get in on until October 24, 2020, the day of the Muscular Dystrophy Association’s MDA Kevin Hart Kids Telethon. There’s lots of great writing about problems with the Telethon’s charity model but this post is from the fundraiser’s point of view, as much as it is from a community member’s.
1. The Past is Prologue
I’ve had more than one person angrily ask how I dare criticize this year’s Telethon when it hasn’t even happened yet. Here’s how:
I know that part of every well-run fundraising event is what’s called its “post-mortem.” The team examines what worked, what went wrong, and (most importantly) how to keep the problems from reoccurring.
I’m worried because early promotion of this year’s Telethon indicates that their last post-mortem missed – or didn’t care about – one of their biggest problems: Jerry Lewis and his legacy of alienating the very people he claimed to serve.
Like most of fundraising, this ain’t rocket science: The best predictor of future behavior is past behavior and we have nearly 50 years of insults and stereotypes at the Telethon that were sanctioned by MDA’s culture and leadership.
This screenshot shows they’re clearly ok with Jerry Lewis’ misconduct.
Promoting the MDA Kevin Hart Kids Telethon by promising to “fondly remember the classic moments from the Jerry’s Kids Telethon,” and include “nostalgic footage” indicates that MDA’s fundraising culture has not really reckoned with its internal ableism.
2. Children – including disabled children – are people. (Again – not rocket science.)
CripTip: Don’t bring children on stage and talk about them in the 3rd-person and how they could die at any time. Please note this is equally bad regardless of whether you know that you’re telling the truth or lying about this PERSON.
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:
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.
“Stigma-busting tales of bringing our disabilities, chronic illnesses, and aging to our work in philanthropy and fundraising”
FAQs for Field Allies
What’s the purpose of the Disabled in Development Project?
Founded in 2019 by Ingrid Tischer, the purpose of the Disabled in Development (DiD) Project is to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities.
What do you want from Field Allies?
Field allies of the Disabled in Development Project (DiD) are friends and supporters who help share DiD with potential storytellers and other like-minded allies.
In choosing to let me list your name and a blurb about you as a Field Ally, you show solidarity with DiD’s efforts to dismantle structural ableism and advance representational leadership in philanthropy and fundraising.
You might be a connector — someone who isn’t a DiD story-teller yourself – who knows people who might want to be storytellers.
Or you’re with an organization that wants to stand with DiD in saying,
“Disability inclusion, equity, and representation are essential to powerful philanthropy and fundraising, and centering more disabled people from multiply-marginalized communities is the way to go.”
Or you’re both!
You help encourage your community to participate and share their stories. You also publicize this campaign among your professional and informal social networks.
Here are some general guidelines:
Please let me know if you’d like to help get the word out. If you would, please email me and let me know if I can list you or your organization as one of our Field Allies.
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