Hey! Here in the back. ScarJo here. I’m FED UP with the lack of respect, okay?
Look, I’m a long, faintly pink line that starts just the above the shoulder blades and ends above the ass-crack. Yeah I’m real sorry about offending your delicate sensibilities. I moved in when my landlady was about 13 and had had a spinal fusion cause her scoliosis was out. of. control. Whereas I held things together.
I was a lot more colorful in those days. A lot more sensitive. Cut nerves I can handle though. But I’m supposed to accept I’m shameful? I’m not exactly blaming my landlady, who was a teenager at the time, for trying to find bathing suits and a prom dress that would hide as much of me as possible. She was a new driver still looking for an unmarked exit off the Bullshit Highway.
“Would you prefer unblemished and dead?”
Remember, all I am is a pink line, with the tiniest smidge of a ridge, on a person’s back. We’re not talking about a sucking chest wound. Or pus. Or whatever’s wrong with Steve Bannon’s complexion. I’m not asking to be a big deal, I’m not asking for attention, for cripes sakes. It’d just be nice to get out and get some freaking fresh air once in a while, you know?
But nooooooo, I’m a SCAR and I must be hidden. Continue reading
Join Our National Call To Repair Or Replace Recalled Breathing Devices
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.
- If you are affected by the recall and want to sign on to this open letter and/or speak to the media, complete this short form.
- Share this letter with your friends and family, elected representatives, and any media outlets who may not be aware of the recall.
- If you use social media, share your experiences with hashtag #SuckYouPhilips.
The full text of the group’s press release follows. Continue reading
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
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!
Hands-OFF Fundraising in 2020: Consent, Consent, Consent