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.
Ingrid Tischer on the day of her kindergarten graduation in Greece, New York, circa 1970. She is wearing a rainbow vest and skirt sewn by her mom. Note the clutching of the diploma and school-bestowed book-bag, and anxious expression — all indicate a future in literary fiction writing and nonprofit fundraising.
If the grand success of the 20th century was the rise of disability as an accepted political identity, we intend for the 21st century to be the time when disability is recognized as the constant but hidden variable in nearly all formulas for global human rights. Including disability as a given factor in most people’s lives is essential to successfully advancing the rights of people who are members of minority communities, survivors of violence and/conflict zones, and veterans; people who live with chronic ailments and have survived catastrophic illness, people who are young and old; male, female, and anywhere on the gender spectrum. While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”
As you sit sweating under an increasingly sweltering sun this day, feeling the inevitable effects of a wasteful attitude toward natural resources, you may not be thinking of another type of catastrophic loss caused by another type of massive denial. I speak of almost no one’s favorite topic: Disability. How denying disability’s central role in just about every human life relegates significant chunks of our lives — and worse still, people-sized chunks — to the rubbish heap. It may be that “disabled” doesn’t feel like a word that fits who you are. Fine. Have you ever felt vulnerable? Think of “vulnerable” as a gateway word to a chronic case of disability-speak.