#IAmaPreexistingCondition Says NO to #AHCA and YES to Protecting People Not Profits

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.”
Transcript:
My name is Ingrid Tischer and I live in California.
My pre-existing condition is muscular dystrophy with chronic respiratory failure.
Without healthcare coverage for preexisting conditions, I wouldn’t have a machine called a Bi-PAP S/T and I would have died in my sleep a long time ago from carbon dioxide narcosis. 
I wouldn’t have been able to keep walking for as long as I did because I wouldn’t have had orthotics. 
I wouldn’t have been able to transition to a wheelchair when I finally needed to.
Because of this, I would tell my senators to vote NO on the AHCA and against any legislation that protects profits over people.
Including people with preexisting conditions.
I am a preexisting condition.

Thank you, Rooted in Rights and National Council on Independent Living (NCIL)!

The Crip Sense: “I See Women and Girls With Disabilities. In Your Organizations.”

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.

Color photo of a fortune cookie that reads,

Why This Workshop, Why Now

In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.

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#CripLit Chapter 2: Funktionslust

 

"...—a word
  for what a sailboat knows, running before the wind—"
Charles Harper Webb, Funktionslust
 

Color photo of a Milwaukee back-brace.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.”

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Before I Resist and Persist, I Must Exist: Bioethical Choice, Living “Like That,” and Working the Early Shift of Cleaning Up Ableist Narratives

filmdis-feb-18-1I 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.

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RespectAbility, Class and Race Privilege, and Leveling the Erring Field

 The post shows a picture of George H. W. Bush and links to a news story of him saying he will vote for Clinton. Mizrahi wrote: If Hillary wins it will because of white voters who care about people with disabilities. BTW, this is NOT a partisan thing. The same is true of Republican Sen. Richard Burr in NC who is running as the pro-PwDs candidate there.. THE POWER OF VOTERS WITH DISABILITIES WILL DETERMINE THE OUTCOME OF THE 2016 ELECTION! Remember that George H.W. Bush signed the ADA!

Screenshot of Mizrahi’s September 2016 Facebook post.

I have now been witness to The Mistake by RespectAbility’s President, Jennifer Laszlo Mizrahi; the unpleased reactions by disabled women of color; some thoughtful initial responses; a cringe-worthy apology-type product; the official statement; and now (I’m guessing), The Great Moving On from uncomfortable conversations about ableism,  racism and disabled people of color within the disability rights community.

Part of me — the part that’s still polite to boundary-busting missionaries — initially wanted to say, “I’ve done this kind of racist shit myself. Sadly.” Then I remembered that much of that shit was when I was near the start of my career 25 years ago. When I would have lost my job — and Bi-Pap-providing health insurance — if I kept that shit up in our very progressive free clinic for gyn care. And how I had no safety net if I lost that job.

Everyone makes mistakes but the erring field is far from equal.

Depending on your class, Repercussions, Consequences, & Accountability are either the Three Furies that dog you even when you haven’t screwed up, or they’re the crisis PR firm you consider for damage control.

When you’re poor, unemployed, a woman, a person of color, a disabled person, or all or most of the above, making mistakes is far more likely to lead to words like “unqualified.” You are threatened with unemployment, fired, and/or are cut off from public benefits. In the worst case scenario, you haven’t made a mistake at all but are questioned, blamed, violated, beaten, shot, killed for being the person you are in public, in school, on the road, and at home.

When you’re affluent or “comfortable,” employed, a man, white, not disabled, or all or most of the above, making mistakes is more likely to lead to words like “executive coaching,” and “Let’s bring our communications person in to help.” In the worst case scenario, you “transition out” to what is often a better-paid job, aka “failing up.” If you are in a position to be a volunteer who has significant authority, the usual checks and balances on your behavior can be even weaker.

That’s when I first realized how integral money, class privilege, and power are to this recent incident. I haven’t seen any real repercussions, consequences, or accountability for Mizrahi — except for a bump to her prestige — and that’s just one infuriating aspect of how race and class insulate those with power.


Then I reread the official statement and I hit a whole new level of disturbed. Continue reading

And Now a Word From the FuckAbilityTM Research Council on the Series #Speechless

FuckAbility™ Research Council to Speechless: You Had Us At “Trash Ramp”

Matt Damon calls on Speechless producers to be more inclusive of nondisabled white male actors

Frankly, the Speechless pilot could end with Minnie Driver’s character pulling a Divine and it would simply convey the amount of shit people with disabilities and their families are expected to eat every day.

(Highway, Heaven) After a cruel, cruel summer that included When Khaleesi Met Romanticide and a profoundly fucked up little number called Don’t Breathe, the autumn winds are blowing our sad, tragic little skirts right up with Speechless.

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Pride and Prejudice: Part Two of Why I Oppose Assisted Suicide Legislation

It is a truth universally acknowledged that a woman in possession of a neurodegenerative disease must be in want of an early death.

 My dear Miss Cripple,mr. darcy

Madam, in vain I have struggled. It will not do. My feelings will not be repressed. You must allow me to tell you how ardently I pity you and plead you to accept my assistance  in hastening your death.

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From Recipes for Inclusive Education, Chapter 6, “Braises and Roasts”

Far from protesting, many an Infirm Child’s eyes shine with an Inner Light at mention of this most noble purpose their otherwise wasted bodies can serve. There are Disabled Children not as wholly selfish as their Disabled brethren who would demand survival, even education and employment, at the expense of their Normal brothers. But good it is to look upon the Infirm Child going cheerfully to the cook-pot to feed the strength of the Normal Child whose rude health is testament to his good character and his Creator’s Pleasure in him.
Color photo of Betsy DeVos, an older white woman, talking animatedly, her excitement presumably over the prospect of destroying the federal civil rights of students with disabilities without even understanding how laws work.

UPDATE: (Salem Village, Massachussetts Bay Colony, January 18, 1617,) Goody DeVos, beloved of GOD as evidenced by her billions, testifying before Congress about the importance of parents being able to choose their disabled children’s schools without mentioning either that: 1) some parents would choose such things as a ducking stool to see if their child’s disability is a “real” one; or 2) choosing that charter dame school the next colony over means they lose their due process rights if the charter school beats their kid for not being able to read his horn book or whatever. Photo courtefy of Salon.

Nature and her master THE LORD have blessed the Educator with ease in beginning any recipe for inclusion, ‘Step One of How to Cook a Disabled Child: Catch a disabled child.’ Truly, the Infirm Child’s emfeeblement makes him an ideal choice for the inexperienced Educator new to his twin masters Efficiency and Economy.

When you have your specimen, consider your various cooking options as well as how many Normal Children you have to feed. Is the Infirm Child plump and well-larded? If this be the case, wrap the lad’s loin with the finest bacon and roast in a hot oven, a dish fit to serve at term’s end to celebrate the holiday.

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Dignity Has Never Been So Disposable

San Francisco had recently become the first county in the country to officially give up on the idea of clean, accessible public bathrooms, available to all in need without regard to payment. The unpropertied in SF were just beginning to walk around with bulgy seats now that all General Assistance recipients were issued a box of generic diapers along with directions to the city shelters, a pamphlet explaining abstinence (UCSF had a grant pending to study the effect of Adult Diaper Dispensation (ADD) on homeless people’s adoption of condom use versus abstinence-only), and $6.95 to get them through the month. The Dignity concession was doing a brisk trade at Pier 39 for unprepared tourists on a budget; a one-day Fun-Pak went for 8.99 but did include two Maxi’s, a plastic Dungeness crab key-ring and a coupon for one Buena Vista Irish Coffee. Dignity Has Never Been So Disposable. A virgin diaper was going for five American Spirits on Sixth Street. The Sheriff’s Department had to fight for, but got, toilets in their renovated facility.

Bureaucrats who may or may not have been wearing a small pin on their lapels, a pin in the shape of a diaper, a stars-and-stripes-waving flag-type diaper almost wing-like from a distance, may or may not have attended a conference in the Caymans to sit in the louvered sunlight of a hotel’s banquet room, listening to presentations such as “Contained Defecation for the Economically Disenfranchised: A Cost-Benefit Analysis.” One of them may or may not have been on the board of a small clinic in San Francisco. None of the conference participants gave any thought to the number of cups of coffee s/he consumed. The conference center had plenty of restrooms. No extra charge. All fees underwritten by the Dignity Foundation, a charitable organization dedicated to community development, medical research, and K-12 education. Please take an annual report. Dignity Has Never Been So Within Our Reach. Earnest modern alchemy, how to make the base substance into cold cash. Magicians, start your engines.

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Tales From the Crip Proudly Announces We Support the Beginning of Life Option Act

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.

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HEY! YOU! MEDIA! 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

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

1. If an access violation is so obvious it can be found through Google’s aerial view, then, yeah, I expect a business owner to be able to find it.

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Sorrow, Bright-Eyed Now, After Meeting Her Death

for Belma González
I

BIPAPSTWhen 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.

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