If these were MDA cookies, they’d say, “I’m half a person,” and “I wish I weren’t me.”

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.

5.  Selling cookies is an age-appropriate fundraising activity, just as it was 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.

4.  A cookie in hand is better than (more than) two decades of promises of cures in the indeterminate future.

3.  Girl Scouts tell people that cookie sales help girls go on camping trips that are about having fun with all different sorts of peers. MDA presents their camp as one week of certain children finally being with their own kind after 51 other weeks of a wretched existence and no future.

2.  Being a Girl Scout made me feel like I belonged with girls who weren’t necessarily like me – a girl in a Milwaukee back-brace who couldn’t walk much – whether it was by sharing the cookie sales or camping together.

1. Girl Scouts don’t say, “Please buy some cookies because being a girl makes me half a person,” or “Buy my cookies or I might die.” Continue reading →