We Can’t Hold Our Breath Until Philips Respironics Takes Real Action On Its Recalled Equipment

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.

Take Action
  1. 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.
  2. Share this letter with your friends and family, elected representatives, and any media outlets who may not be aware of the recall.
  3. 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

My FEDup™Rant: The Top 5 Reasons Girl Scouts Are Better at Fundraising Than the Muscular Dystrophy Association’s (MDA) Telethon

FED UP TM Ideas worth ranting about

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.

2 Girl Scout cookies that say I Am A Go Getter and I Am a Leader

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

This #NDEAM, Let’s #Consent to #EndTheTelethon and Dismantle the Charity Model – Again

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

Telethon screenshot. Lewis has his hand grabbing a young girl's knee. "that we are about to present and it's for her and a million other of my kids"

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.”
Past KFC/MDA print ad saying, "On May 24th, show this child you care," with an explanation of why buying KFC will help kids. Lewis has his arm wrapped around a small boy in a wheelchair

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

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Zzzave the Date! The 2nd Annual Nap-a-thon for Disability Rights is Coming on March 12, 2021, World Sleep Day

Photo collage of 17 naptivists, including adults, children, dogs, and cats. Described in post below. Text: 1st Annual Nap-a-thon for Disability Rights March 13-15, 2020 talesfromthecrip.org 3 Days, 38 Naptivists #TiredOfAbleism $1740 in Donations 100% to dredf.org Thank You for Your Naptivism!

All Photos courtesy of Naptivists

Well, the glorious 1st Annual Nap-a-thon for Disability Rights was all of 6 months ago. In news that will shock absolutely no one, I’m tired again. As I bet you are, too.
So – when the waking gets rough, the sloths plan naptivism.  And that means…

Sloth photo. Zzzave the Date! March 12, 2021, World Sleep Day. The 2nd Annual Napa-a-thon for Disability Rights #TiredOfAbleism Naptivists stay tuned at talesfromthecrip.org

Zzzave the Date! March 12, 2012, World Sleep Day

Summon your inner naptivist sloth and stay tuned for more info on how to be part of the
2nd Annual Nap-a-thon for Disability Rights!

My FEDup™Rant: I Adjusted to Wearing a Face-Mask By Wearing a Face-Mask

FED UP TM Ideas worth ranting about

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.

Ingrid wearing a colorful cloth face-mask, sitting next to a fuschia orchid

Photo credit: Christopher Egusa

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