Remembering Judy, the Capitol Crawl, and Other Health News
In writing this edition of the newsletter, I realized just how much I was trying to pack in here - and that it would make this super text heavy. I wanted to dedicate some time and space to focusing more on health stuff and remembering Judy Heumann, so I’ve cut this edition in half and will be sending the other half in the next day or so. That one will be focused most on anti-LGBTQ+ efforts, so buckle up.
Remembering Judy
Activist Judy Heumann led a reimagining of what it means to be disabled, and that’s frankly an understatement. Her feistiness, fire, and love helped change the United States and quite literally the world:
In 1993, President Bill Clinton named Heumann — the woman who had once been declared a fire hazard too dangerous to be a student or a teacher — as assistant secretary of education, in charge of all of the nation's federal education programs for students with disabilities.
Later, in the Obama administration, she worked as a special assistant to Secretary of State Hillary Clinton, in charge of spreading ideas about civil rights across the world.
Rebecca Cokley, another amazing disability activist, recently sat down for an interview with WBUR about Judy’s life and legacy. There’s so much good in there, but perhaps the quote that hits me the hardest is this:
Watching my children look at her and have the understanding that every day that they go to school, it was because Auntie Judy and her friends fought to make that happen. It has trained them and really planted a seed that when they see intolerance, when they see discrimination, even as children in elementary and middle school, not only should they say something, they have a responsibility to say something.
On Wednesday, at her memorial service, those leading Judy's service invited folks "to please rise in spirit or body if able.” This was language Judy helped inspire in these leaders, members of her synagogue. All throughout the service, there were reminders that disability was being centered, from the speakers to logistics of advising folks that those with wheelchairs or scooters should be the first in line to follow the family’s vehicles to the cemetery. Just as she did in life, Judy continues to inspire mindfulness and change in death.
I couldn’t be prouder to have her as a member of our disability family.
The Capitol Crawl
Today is the anniversary of the Capitol Crawl, a major event in the disability history of the United States.
You can read the poem I wrote in commemoration here.
COVID-19
Almost 7 million children and teens are at risk of losing their health coverage when the COVID-19 public health emergency ends in May. In other COVID-related news there is finally a combination test for that and the flu available in the US. Other countries have had these for a while, but they are hard to access here. Many people with long-COVID symptoms are not only dealing with health issues but with a society that just has not pulled together any real infrastructure to support them, from the SSI/SSDI process to insurance denying claims. While we wait for the Biden Administration to IDK do something here, many of us will continue to push for better awareness, inclusion, and mindfulness.
Don’t forget to check out the People’s CDC and their most recent COVID-19 weather report.
Insulin + Diabetes
Speaking of the administration, Biden’s recently released budget would cap monthly insulin prices at $35 for people on private insurance (AKA uninsured people are still fucked when this drug should be free). This comes after Eli Lilly, one of the pharma companies that produces a ton of insulin, announced that it would cap out-of-pocket costs for those using their insulin at $35 a month as well. Their non-branded insulin is predicted to go down to $25 a vial.
These price caps are great AND there is still more work to be done, as more BIPOC and especially Black folks lack insurance and would be SOL with regard to price caps. That doesn’t even address the issues of getting diagnosed properly or accessing a healthier diet, as many of these same folks live in food deserts. Race can also play a huge role in how people are perceived when seeking medical care, leading many Black folks to adjust everything from their looks to how they act to even speaking up when something harmful is said - all to help ensure that doctors take them seriously. This could be resolved with continuing education or actually adjusting how students interact with race in medical school.
The FDA, FBI, Chronic Pain, Reproductive Rights, and Your Data
Did you know that cancer can be more difficult to detect in dense chest tissue? The FDA is establishing a new rule for mammogram providers to allow their patients to make better-informed decisions about seeking further testing if they have dense tissue.
The FBI recently arrested Laura Perryman, the CEO Stimwave, an implant that was supposed to help folks manage chronic pain. Their white stylet, an FDA-approved device, was non-functional and literally just a piece of plastic. Speaking of things that don’t work for chronic pain, antidepressants basically do nothing. If you’re a patient whose provider has suggested you go on one for pain, you’re probably screaming “DUH” at this newsletter, but there is finally research to back this up - especially for tricyclic antidepressants.
BetterHelp, an online mental health platform, is finding itself in hot water again after sharing customer data that they promised was private with advertisers. Even more, they pushed people into doing so. The FTC is banning them from doing so, obviously. Possibly even more alarming is that app or platforms you use to track or treat mental health often do this in surprisingly legal ways.
You know who else is turning over your health data? Facebook and Google, especially if you have sought an abortion. In related news, Walgreens will not make abortion pills available in states seeking to ban abortion - even if that is a currently legal practice - as GOP attorneys in those states have threatened legal action. North Carolina recently backed down from trying to restrict mifeprisone after being sued for going beyond FDA restrictions. Texas is seeking to block access to websites discussing abortion, hoping to make it illegal to host or even provide domain registration for sites that help people in Texas obtain or pay for abortions. And, surprising no one, Utah Governor Spencer Cox is planning to sign a ban on abortion clinics despite saying last year that he was pleased with the laws Utah had already.
Medicare was initially set up for people who are older. That means that a lot of disabled folks who are in their childbearing years are finding it cheaper to get hysterectomies instead of birth control. This echoes of forced sterilization and eugenics, frankly. Did you know disabled folks can still be forcibly sterilized in 31 states and Washington, DC? The most recently laws allowing this were passed in 2019 in Iowa and Nevada.
Catch All
Sometimes I cut things from newsletters because I can’t figure out how to fit them into the larger narrative. Here are things that would’ve made the cutting room floor if I had kept the newsletter bigger.
The new AAP guidelines on childhood 'obesity’ are pretty harmful when it comes to perpetuating weight stigma.
The asthma inhaler albuterol is in short supply right now after Akorn Pharmaceuticals (one of the biggest suppliers) filed for chapter 7 bankruptcy in February. There are alternatives should you need them.
Norfolk Southern has agree to pay for folks in East Palestine, Ohio, to relocate during the clean-up of the site. No word yet on if they’re be assisting those in Pennsylvania or further down the river with literally anything (I won’t hold my breath).
Bindi Irwin, one of my favorite people on this planet and daughter to the late Crocodile Hunter Steve Irwin, recently started to openly talk about having endometriosis.
Plus, the Coalition for Trust in Health & Science - a coalition of nearly 50 organizations - just launched in an effort to fight medical misinformation.
Equity Issues
There have recently been a huge number of layoffs in diversity, equity, inclusion, and belonging (DEIB) work. Many companies began to hire DEIB experts in the wake of George Floyd’s very public murder. Now, it seems that many companies are seeing these roles as optional or less profitable. These same companies aren’t aware of how they are harming their business, employees, and bottom line.
The Minnesota House recently passed a measure to create nation’s first Office of Missing and Murdered African American Women. For those unfamiliar, Black women are three times more likely to be murdered in Minnesota - and to have their cases remain unsolved - than their white peers.
It’s no secret that the costs of education have gone up. Did you know that a decent chunk of students are selling blood plasma to pay for it??
More celebrities are being unapologetic about sharing their disabilities. Selma Blair is one example - and she’s now the QVC Brand Ambassador for Accessibility! That’s right - QVC is selling accessible things, and a lot of them are actually really cute!
Christina Applegate is the latest, coming out and talking about her disability. It’s not lost on me that both Selma and Christina has Multiple Sclerosis (MS). I hope that they’ve connected with each other and been able to support each other.
Did you miss the fun Twitter news this week? Elon Musk decided to mock a disabled employee that he laid off, saying Halli did ‘nothing’ at the company. Not only does this look like shit and could be illegal due to disclosing disability status of an employee, but Halli had negotiated a huge severance package. I honestly hope Musk is shitting his pants a bit.
DisabilitySoWhite is something that trends on social media from time to time, because it’s true. People tend to highlight white folks over BIPOC and especially Black folks. Here are 12 amazing Black disabled activists to check out! René over at Black Girl, Lost Keys has also collected an awesome list of neurodivergent resources for Black folks which is SO needed.
Speaking of neurodivergence, did you know those of us who are neurodivergent - that is, who have ADHD, autism, PTSD, or a number of similar conditions - have our own love languages? My friend Chels and I, along with their friend Rebecca Heimlich, recently crafted a piece about this.
Jobs
If you’re disabled, check out Inclusively. This FREE platform works to connect candidates with disabilities, mental health conditions, chronic illness, and neurodivergent people to inclusive employers. Employees can lead with their accommodations for work and even interviews. They also have a lot of educational information for job seekers, advocates, and employers alike on how to improve accessibility in the workplace.
PS: Savvy Cooperative is searching for a Project Manager/Market Research Coordinator.
If you have feedback or anything you’d like to share, feel free to reach out to me on social media or by email (all linked here).
Take care of you, lovebug <3
Grayson