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
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.
I remember being a young kid, maybe 6-7 years old, and going on live TV in front of thousands of people. I remember by parents saying on TV that I was ‘dying’ – and I remember how painful that was because that was honestly news to me.#EndTheTelethon #TurnOffPity— Olivia (@BagofSilly) October 17, 2020
3. Literally de-facing the people you’re fundraising for sends the message that they’re headless props and not people with equal rights.
CripTip: Giant “GIVE NOW” banners shouldn’t be positioned in the lower half of a screen, where they will completely cover a wheelchair-using kid’s face. As MDA really ought to know.
4. Events, like all fundraising, should foster a culture of philanthropy that advances the mission and never undermines it. (See more on this at #5 and #10).
CripTip: Thinking critically about fundraising practices is good. Dare to ask questions about whether the Telethon’s fundraising messages and tactics advance or undermine the mission when they spread misinformation about neuro-muscular diseases (NMDs), reinforce stereotypes, and lower baseline expectations for a high quality of life.
Events are opportunities to model your organization’s values and build relationships that create a culture of philanthropy vs the Telethon’s transactional revenue generating.
5. How you raise money says a lot about the cause you want to fund.
If MDA uses children as props and hurts their feelings, that behavior communicates that they don’t actually care about the cause of improving our lives. That puts MDA’s fundraising in conflict with its mission. (If fundraising were rocket science, this would be like aiming your missile squarely at mission control.) ( Or if you’re this rocket scientist, whose allegiance is ruled by expedience, and who says that your attitude should be one of gratitude.)
6. Representation matters in fundraising just as much as it does in program work.
If MDA‘s staff, leadership, and board are largely nondisabled and/or white, that defies, “No funding about us without us.” And – no surprise – this correlates with a lack of diverse representation in programs.
7. You can’t buy back respect.
Which is what the poor schlimazels doing MDA’s advocacy are tasked with, using these undefined grants, now that the schlemiels on the fundraising side have messed up again.
8. Credibility is everything in advocacy work. The Telethon is a disaster for MDA’s advocacy team.
My program colleagues doing advocacy work shouldn’t have to deal with negative attention drawn by my fundraising tactics and or worry about it impugning their credibility. I use to work for Equal Rights Advocates and, I promise you, if my fundraiser Luncheon’s messaging had included a keynote speaker who said, “My girls cannot go into the workplace,” (as Lewis said of his (sic) Kids) I would have been out of that particular workplace before the event ended.
9. You’re honest about what you do with donors’ money and what the organization does.
→ MDA has allegedly not abided by donors’ restrictions. This is…bad.
“Also alarming to the watchdog was the MDA’s self-reporting that it had borrowed from donor-restricted funds to cover operating costs.” –The Hollywood Reporter
CripTip: Donors will leave you when they find out you haven’t been a trustworthy steward of their gifts.
→ Most of what MDA currently does is promote access to research participation and diagnosis. This is…not the impression the Telethon will give you, regarding its clinical services.
MDA’s “health access” work is really more about clinical researchers having access to people like me. Which is fine – but MDA needs to be clear with the public that they don’t provide medical care, per se, supports, or equipment, and have not for decades. To some people with NMDs, this also raises questions of judgement in setting priorities.
Donors also want candor: MDA should tell them they provide diagnoses but referrals only for care, treatment, services, and equipment.
When it came down to it, MDA was no where to be found when we needed help. They never assisted with a wheelchair purchase. Their specialist clinic provided no benefit to my health, no information on medical devices or community programs. #EndTheTelethon #TurnOffPity #ShameOnMDA— Kendra Scalia (@kendra_scalia) October 17, 2020
10. Money is not more important than mission.
Fundraisers need to understand that money is the measure, not the goal, of our work. Advancing the mission is our goal. “The end justifies the means” is a substandard fundraising strategy that requires accountability beyond counting the money. Especially when the means include frightening children and allowing others to be excluded by the organization.
CripTip: Build systems of accountability for fundraising practices into your organizational culture, like compensated leadership groups with authority instead of advisory groups that are expected to provide unpaid labor and denied decision-making power.
BONUS! Stuff I Ask As a Fundraiser With Muscular Dystrophy (and go here to read why Girls Scouts are better fundraisers)
→ Are any adults with NMD leading the decision-making regarding MDA’s fundraising culture and the Telethon, in particular?
→ Is having children do the Telethon’s fundraising labor again this year MDA’s nod to National Disability Employment Access Month (NDEAM)? Because if so, it’s right in line with Jerry Lewis claiming, “My kids cannot go into the workplace,” on LABOR DAY.