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.
This is a graphic illustration by Haley Brown with a bright cobalt blue background. There are black lungs filled with dark gray puffy clouds. In the left lung is a yellow canary bird with a red eye in a mid-flight attack pose. In the right lung there is a red circle. Around the lungs there is clear white tubing that is entwined. Above this graphic the white text reads: #SuckYouPhilips
The full text of the group’s press release follows. Continue reading
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
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
→ In 2020, we need to critique this 2010 image from the Muscular Dystrophy Association (MDA) Telethon in terms of consent as much as we do its infantilizing attitude and fundraising tactics that use disabled people as charity props.
→ MDA needs to be held accountable for their broader transactional narrative in which disabled children are expected to allow strangers to touch their bodies as part of obtaining money for their health care.
→ The “new” Telethon is being held on Oct. 24, during National Disability Employment Awareness Month (NDEAM). There is a connection between the MDA Telethon and employment. What we learn as children is carried into adulthood. The lesson here can too easily become, “I need my paycheck so I have to put up with my boss touching me.”
MDA, Jerry Lewis, KFC, and a bucket of reasons why disabled children shouldn’t be used as props in cause marketing charity campaigns.
BONUS! Go here for “Stuff I Know As a Fundraiser Who Has Muscular Dystrophy and Why It’s (Past) Time for MDA to #EndTheTelethon”
BUT WAIT – WE’VE GOT EVEN MORE BONUS! Go here to read why Girls Scouts are better fundraisers than MDA’s executives
I’m FEDup with people saying they can’t adjust to wearing masks even though they help protect lives during a pandemic.
If you have access to a mask but won’t wear it, take a #CripTip: Shift your narrative from, “I CAN’T ADJUST!” to “I will adjust and it will take time.”
I get it. Masks feel strange and uncomfortable. But unless you’re one of the relatively few who truly cannot physically tolerate wearing a mask, face shield, or other face covering, it’s not about whether you can. It’s about whether you want to.
Since you presumably want to save lives during a pandemic, the first step is dealing with what you’re telling yourself about wearing a mask and then, as needed, unpacking that typically messy box where emotions and physical feelings are stored in a jumble.
Note: I’m not addressing this to the, “But I shouldn’t HAVE to wear a mask and I won’t!” crowd. I have many skills but Fixing Selfish Magical Thinking isn’t one of them.
Photo credit: Christopher Egusa
Welcome to Behind the Trailer, where we at the FuckAbility™ Research Council tiptoe into the seriously shady trailers of movies and tv shows to explore whether you’d want to waste more than three minutes on them.
First up – the trailer for SEE, an all-caps Alec-Baldwin-free Apple TV series about being blind while doing some post-apocalyptic camping. The premise: The world’s been destroyed and nobody can SEE but blind actors still aren’t getting cast even in roles for characters who can’t SEE.
On the plus side, Jason Momoa is back in his finest Kal Drogo kit and there’s some lovely styling of rustic interiors that may push me into finally buying a fake-fur throw for our futon couch. Also: Good to see actors of color in lead roles. Continue reading