deathstyles of the rich & abled, end-of-life merch, male-pattern bs
Individuals who depend on recalled ventilators and other breathing devices manufactured by Philips Respironics have joined in a letter, along with over two dozen disability organizations, demanding that Philips repair or replace the devices. The recall was announced in June, stating that the devices were found to release potentially harmful particles and gasses, but offering little information and no timeline for corrective action.
I’m among the affected individuals and have been part of a small group of users organizing a response with the support of the New York Law School and its Civil Rights and Disability Justice Clinic. “Respiratory equipment is not like a car that’s faulty. You can stop driving the car, but you can’t just postpone breathing. So we were given a really ridiculous thing that they called a choice, which was use it or don’t,” I told The Verge.
Update: Philips announced a repair and replacement program for one of their recalled models, the DreamStation, on September 1, 2021.
The full text of the group’s press release follows. Continue reading
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.
This post is part of a blog-weekend protesting the re-emergence of the Muscular Dystrophy Association (MDA) Telethon. Sadly, Kevin Hart and MDA are bringing the charity model and Jerry Lewis back like Zombies of Ableism on October 24. We, the Not-Walking-Not-Dead-Yet, have to use our social capital to stop them in their tracks as the Hartless Crips we are.
I’m proud to be one of the disabled activists organized by disabled filmmaker, writer, and activist Dominick Evans to once again protest an event that perpetuates disability stereotypes, spreads misinformation about neuro-muscular diseases to increase donations, and utterly ignores structural ableism. In 2015, I wrote about the end of the Telethon that inexplicably ran every year on Labor Day and was presided over by the guy who claimed his “kids” could never go into the workplace.
This post revisits portions of it with an eye to the continuing issue of employment – if only because disabled children will once again be working at the Telethon for their health care, and potentially taking some very concerning lessons away from that experience about consent and power. Thank you, Dominick, for your leadership!