I’m FEDup with the Muscular Dystrophy Association’s (MDA) Telethon. Unlike other disability groups, it’s still teaching children with neuromuscular diseases (NMDs) that their role in fundraising is to perform their disabilities and/or be treated as passive props in an ableist play. There are better ways to involve all children. Example: The Girl Scouts’ cookie sales.
If these were MDA cookies, they’d say, “I’m half a person,” and “I wish I weren’t me.”
The Top 5 Reasons Girl Scouts Are Better at Fundraising Than the Muscular Dystrophy Association’s (MDA) Telethon
5. Selling cookies was an age-appropriate fundraising activity for me as an 8 year old Girl Scout. Versus MDA putting even younger children on television to have their medical status be talked about and possibly misrepresented. Continue reading
I’m FEDup with “debates” about my sexuality, my reproductive choices, my existence. There is so much to love about social media and one of those reasons is the experience of going on Twitter to
quickly check my popularity see what I can do to better the world and finding an objective discussion underway regarding whether someone like me should be “allowed” to reproduce. The person who asked the question may not even understand that, by placing my reproductive choices and existence within the frame of public approval, they’ve reinforced bias against me, a woman with a congenital disability who lives “like that.” Check out another guy who asks rational questions just like you did.
I’m not answering on Twitter because — unlike when I was in my 20s, 30s, 40’s — I no longer feel required to justify my existence just because somebody decided to have an “objective” “discussion” about whether I’m really worth the hassle.
Yup, even when your purpose is ostensibly positive, how you frame the conversation matters. Growing up with muscular dystrophy means I’ve heard more times than you can imagine that my particular disability places me — of course! — on The List of Lives That Suck. What’s newer or less personal to you is very different to me as a woman with a congenital disability. So here’s an excerpt from a longer past post that elucidates where I’m coming from. Continue reading