Call, email, use social media to tell your Senators to vote NO on the AHCA:
Sample Script: “My name is ________________, and I’m calling to tell you that I oppose, and expect you to oppose, the American Health Care Act. We’re not going back to a pre – ACA era where insurers could ignore the needs of people with disabilities and pre – existing conditions and everyone was one medical emergency away from bankruptcy. If you value the health and well – being of your constituents, you must speak and vote against the AHCA.”
I was really excited about closing out Women’s History Month this year by developing and delivering an interactive workshop, “Building Your Organization’s Capacity to Ally With Girls Who Have Disabilities: Principles to Practices” for fellow (sister?) Alliance for Girls members, as part of my work at DREDF. (To the members who attended — you were GREAT participants!) Based on issues I’d recently written about, I wanted to call it “The Crip Sense or ‘I See Women and Girls With Disabilities. In Your Organizations.’” (Scroll down for 3 “posters” of workshop content.)
I said that part of having The Crip Sense is seeing things that are painful:
- Disability human and civil rights violations. Way too many of them.
- Violence against disabled children and adults – especially people of color (PoC) with invisible disabilities — even by caregivers, school personnel, and law enforcement officers, and that such violence at home, in school, and on the street is excused or rationalized.
- Girls who have internalized stigma that makes it feel “normal” to disown, downplay, or deny having a disability.
- Girls who hear – even from some disabled people – that “initiative” and “personal responsibility” can defeat systemic barriers born of — and well-maintained by — prejudice, and that they’ve failed if they’re defeated by rigged systems.
Why This Workshop, Why Now
In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.
From Ima Notkidding’s Powerful Testimony in Support of California’s Beginning of Life Option Act:
“She never wanted to live like that.“
“I’ll never forget what one of her doctors from one of those really horrible countries said to my sister, ‘It’s like you want what the women in my country already have, this ‘medical care’ that isn’t really medical care at all. How very strange.’ It IS really strange. We just want to not have what a lot of women in way poorer nations already don’t have and here we have to fight to not have it! …Fortunately, Choices & Compassion has been there for me and together we got my representative, Joe King, to sponsor a bill here in California that gives pregnant women the right to prescriptions that will hasten their births. To use when WE know it’s time. Just the knowledge that I’ve got the drugs should I want them gives me incredible peace of mind. And just the knowledge that he has no liability, no matter the outcome of my using his prescription to hasten my birth which no medical provider was required to attend, gives my doctor even more peace of mind.”
As of today, April 1, 2017, Tales From the Crip is proud to announce its full opposition to opposition to so-called “physician-assisted birth” that gives a woman who is suffering from pregnancy the right to birth naturally and when she is ready.
- We believe that physicians should be legally permitted to prescribe medication that will be self-administered to induce labor when a woman has been diagnosed as being within 6 months of birthing.
- We feel SUPER about a law that does not state that a prescribing doctor — or any medical personnel — attend a woman who has self-administered their prescribed drug to hasten birth.
- We feel super-DUPER about a law that shields prescribing physicians from…complicated outcomes of such births by lowering the acceptable practice standard to the “good faith” level. For just this one area of care.
"...—a word for what a sailboat knows, running before the wind—" Charles Harper Webb, Funktionslust
Alice was a tidy packer but there was no way she had fit all that into the one suitcase. Accepting the coffee her mother handed her, Gretchen waved off questions about her sore throat, eyes glued to the three objects lined up on the couch next to the sleeping Phoenicia. She rocked thoughtfully as Alice fretted about her being too ill for the clinic visit later in the day.
“Will you please relax, Mom? You’re looming. I’m fine.”
Alice tossed her the second gift, a dark blue paperback that landed on top of Dolly in Gretchen’s lap, making her gasp with laughter and ask, “Where did you find this?” But it was the third, the final gift, that made her sit back and say, “Oh good god.”
I represented DREDF in this conversation but it’s stirred up a big case of the feels about “choice” and being a liberal woman writer with a congenital disability, and the context this establishes for storytelling, and resisting and persisting. I continue, after 30 years of adult activism, to feel like I have an early shift of ableism — prepping the world to accept that I exist — while my nondisabled fellow human resisters and persisters get to sleep in. And if I weren’t white, conventionally educated, cis gendered, unthreateningly queer, and had all sorts of middle-class, married advantages, I’d probably never sleep at all. Image courtesy of the Disability Visibility Project.
Step 1: I Exist!
As many people who know me know — all too well — I’ve been writing a novel* for the past 400 years or so. The novel, The Cure for Gretchen Lowe, is the exploration of a what-if premise: What if a congenitally disabled woman were offered an experimental therapy that would cure her? The cure itself, Genetic Reparative Therapy (GRT), was never the point of the story because biomedical research, real or invented, never seemed like the most interesting part of the story. What I’ve been stuck on, like an oyster (or barnacle), since the idea first irritated my imagination was how I saw that my character’s situation began as a will-she-or-won’t-she question. From what I’ve observed in 50+ years of congenitally disabled life, that question isn’t typically a question to The Average Reader. “Well, of course a person like that would want GRT!”
I’ve considered that point of view quite a bit — 400 years allows for that — and much more seriously than I make it sound here. But that assumption also irritated me mightily: As a lifelong like-that-ter, I’ve run up against a lot of nonconsensual of-coursing when it comes to my bioethical choices. Simply opening my story — which I refer to as being “CripLit” — with a genuine choice, not a pro forma one, felt like I wrote in letters across the sky: I EXIST.
60 Minutes Came to the Bay Area, birthplace of the Independent Living movement — a largely unknown chapter of US civil rights history — for footage for a piece about the 25th anniversary of the Americans with Disabilities Act (ADA).
They filmed me, moving about the Ed Roberts Campus (ERC), where I work at Disability Rights Education & Defense Fund (DREDF), an ERC founding partner.
They filmed other members of the cross-disability community.
And they used that footage to undermine and dishonor the law that made me — a woman with a disability — a full citizen in 1990.
60 Minutes came to OUR house, used us, and told the world people with disabilities are either dupes, greedy, or both.
Top 5 Notes to Anderson Cooper Regarding His 60 Minutes Hit Piece That I Shot B-Roll For Once Upon a Time When It Was Going To Be About the ADA’s 25th
Segment also provides excellent instruction in “How to add insult to injury” by failing to caption its online streaming video
for Belma González
When Gretchen landed in the hospital again with pneumonia in 1993 she learned she had something called sleep apnea, plus chronic respiratory failure and minor heart damage that she, only 27, could expect to heal with proper treatment. At the first Wednesday morning meeting following her return to work a few weeks later, the West-Hesperidan women’s free clinic staff apologized to her. Even with her cane, Gretchen couldn’t stand long enough for fourteen women to express remorse so everyone stayed seated instead of making a circle around her. The gist was that while they knew Gretchen had muscular dystrophy, they still hadn’t thought of her “like that.” They said they were sorry for not respecting that Gretchen had a disability and for assuming that she had been lazy and napping at her desk when she was, in fact, semi-conscious and unconscious, depending on the time of day.