#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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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

#CripTheVote: You Have Hillary Clinton to Blame for This Blog Post

For the first time in my 50 years on July 28, 2016, I heard my disabled childhood described through the civil rights lens by a presidential candidate, Hillary Clinton. She centered my childhood where I would have: on education and public schools.

It’s difficult to explain the magnitude of hearing my disability identity described in the language of equal rights and not special needs. As meaningful as it was to see a woman accepting the nomination, the tectonic shift I felt was in Clinton accepting me as I am: as a person who deserves respect and can serve the greater good. Not as a diagnosis who has nothing to give or a vote to cast. Certainly not as a target to mock whose vote is irrelevant. Because I have gained my right to an education, I gladly accept the responsibility that comes with answering these two questions:
What do I want to contribute to that is bigger than myself? What is it that I have to contribute?
In using the education that Hillary Clinton and other disability rights advocates fought for, I have a shot at becoming a role model who works together with others rather than being labeled an “inspiration” who is kept at a distance.
The story of childhood is the story of education. The access to and quality of education determines whether that story is one you want to retell over and over, or one that threatens to scare you into silence. The school-to-prison pipeline and the violence that students of color with disabilities experience in the name of “discipline” are the education issues that need urgent action today. I appreciate Clinton’s past work because I see potential in it for protecting the rights of more children and youth with disabilities.
B/w photo of a little boy and younger girl sitting. Both smile and the boy is giving the girl a mischievous sideways glance.

The author and her older brother. Hillary Clinton said, “Every kid with a disability has the right to go to school.” That was an idea – not the law – in 1967 when this photo was taken. Three years later, this little girl could not start first grade at the neighborhood school where her older brother went. The school had a pet rabbit named Pugsly. Inclusion: DENIED. An education: DENIED. A bunny to pet: DENIED.

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Announcing #ADA26 as The Year of #SassingBack, #CripLit-Style

 

Parody People magazine cover announcing NotPeople's Rationalest Man Alive! Peter Singer

Unlike Melania Trump, Tales From the Crip plagiarizes only its own material. In honor of the Americans with Disabilities Act’s 26th anniversary, TFtC is kicking off The Year of Sassing Back, #CripLit-Style by offering this gently-used excerpt from our first — and only! — NotPeople Magazine’s Imaginary Interviews With People Who We Wish Were Imaginary. Our own Respironics Bi-Pap S/T sat down with philosopher Dr. Peter Singer, Princeton’s Ira W. DeCamp Professor of Bioethics, whose anti-crip, pro-swine agenda argues that infanticide of babies with disabilities should be legal up until the 28th day after birth, that health care for people with disabilities should be rationed, and that the consciousness of some pigs doesn’t get enough respect. Happy ADA26! We’re not dead yet!

On the Love Secrets of the Utilitarian!

RBPS/T: Isn’t “No Rules, Just Rights” pretty much the mating call of the utilitarian?

PS: “If it feels good, do it,” is a much more rational mating call.

RBPS/T: What’s a common way for a utilitarian to get friend-zoned?

PS: A utilitarian could help a hot girl move and then she gets back together with her bass-player ex. Who’s a contemporary Continental phenomenologist.

RBPS/T: That sounds…nonhypothetical. And gender-biased. But hey, you are a philosopher.

PS: JUST BECAUSE WE’RE UTILITARIANS DOESN’T MEAN WE LIKE BEING USED.

RBPS/T: Hypothetically.

PS: It was a long time ago. I am completely and 110% over it. My happiness has never been more maximized. A random person might see me on this cover and think, “Wow, he is totally living the life he said he would and here I am, possibly married to but probably long-since-dumped by an untalented string player who distracted me from what my life could have been, and if something tragic happens like I get so horribly disfigured in an accident that I need expensive but ultimately futile treatments or I have an adorable but super sick baby — which wouldn’t be so unlikely if the weak genes of a contemporary Continental phenomenologist were involved in the uterine brew — I will most definitely not want societal resources wasted on prolonging our now-useless lives that are almost entirely composed of suffering moments that don’t include one single glimpse much less the infinitely tender touch of the brilliant moral pragmatist — pragmatic moralist? — I should have appreciated and who I secretly dream of providing me with his personal care and support at no cost to the public or to his individual liberty.” SHOW ME ONE TENURED “ARTIST,” SHEILA!

RBPS/T: No projection there.

PS: What’s projection?

What #CripLit Means To Me (and How It Differs From #DisLit)

What #CripLit Means To Me (and how it differs from #DisLit) 1. In #CripLit, at least one main character has a disability and the narrator is aware of its political dimension. 2. In #CripLit, living with a disability can be described through the narrator's point of view, not just the character's, and this can provide stylistic opportunities. 3. In #CripLit, a disabled character can be deeply flawed, unlikable, or foolish, and is not obligated to be an advocate, inspiration, or role model in fictional clothing. 4. In #CripLit, an anti-hero can have a disability that is integrated into their character. 5. In #CripLit, the story does not seek to educate the reader about the mechanics of living with a disability and does seek to describe a fullness of experience, whether wholly or partially imagined. © 2016 talesfromthecripblog.comWhat’s All This About #CripLit? I’ve been writing stories since the 80s and becoming progressively more disabled since 1965. I write what I know but I don’t want to know what I’m writing before I write it. To me, “CripLit” means characters who are disabled and embrace the politics of disability, its ethical and moral dimensions. “And with a little sex!” to quote Sullivan’s Travels. © 2016 talesfromthecripblog.comWithin the broader realm of literature featuring characters with disabilities — #DisLit and memoir — #CripLit presents an understanding of disability using the lens of the social model. It eschews disability as a narrative device and shortcut for conveying sentimentality, heroism, and disaster to readers.

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