Photo courtesy of Dom Kelly
“When I asked if I could create a disability council at Fair Fight Action, I was given enthusiastic support and encouragement.“
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.
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.
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.
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
Photo courtesy of Catherine Hyde Townsend
“Developing relationships between community leaders and philanthropic staff is essential. These social networks not only inform grant-making decisions, but also help reinforce learning and understanding of the disability community. It’s also one of the hardest things to do.” 
Photo courtesy of Alex Tabony
“Employers are often focused on obtaining the ‘best and the brightest’ and have defined that, in part, as having a profile that typically PWD (people with disabilities) do not have because of missed developmental opportunities and/or non-traditional backgrounds for the position.“
Photo courtesy of Emily Ladau
“Currently, it seems a lot of organizations are beginning to recognize disability as an area for funding, but it’s time to move beyond a charity perspective. “
Photo courtesy TEDX
“My most positive experience was working at The Ford Foundation when they wanted to learn about barriers we face and what Ford needed to do to become more educated and inclusive.”
Photo courtesy of the Disabled and Proud Conference
“It’s hard to work in this sector and to be asking mostly people with disabilities for money. People with disabilities are disproportionately low income, and the system keeps us poor… And if foundations aren’t interested in funding disability rights and individual donors just can’t give enough, where does that leave us?”
Photo courtesy of Tiffany Yu
“I look to other movements for best practices and learnings that we can bring back to the disability community. I also acknowledge that we are still working on making all of our movements more intersectional.”
Photo courtesy of Marsha Saxton
“I would like younger leaders, women and people with disabilities, to not have to go through the tokenization that I experienced as a younger person. I submitted to this because I didn’t really recognize what was happening to me at the time, and was afraid, and made to feel grateful to have a meeting or participate in conference with philanthropy.” 
Photo courtesy of Alice Wong.
“The philanthropic field has a lot of work to do to learn and reflect on systemic ableism, and take concrete steps (not just lip service) on how their actions and policies reflect their commitment to anti-ableism.“
Disabled In Development 