There’s No Cure for Gretchen Lowe: The List of Lives That Suck

“I’m not really looking to change, Mom.”

“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”

Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”

Alice continued. “I can’t believe you would even consider not being part of this study.”

“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
Silence.
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”

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My FEDup™Rant: I Want to Be Envied

FED UP TM Ideas worth ranting aboutI’m FEDup with aiming way too low.
I realized this after Congress voted this week to deny me the pleasure of peeing like non-disabled people do, which is to say, without having to do any kind of math, scheduling, or general advance planning when going out to public places.
But by being denied the minimum, I’ve learned to want everything.
You know what would be great? If I could be envied by non-disabled people.
Yes – envy’s bad! I shouldn’t want to be envied. I should want inclusion. Justice. Equality. I should want respect, love, acceptance.
Of course I want all that. But I want more.
I want to be envied by non-disabled people. Not admired. Envied.
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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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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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#WSPD2016: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

September 10 is World Suicide Prevention Day. But for a disabled person like me,  it’s just not my day.

Increasingly:

What would be a “threat of self-harm” for you, is a “personal choice” for me.

What calls for an intervention for you, calls for a pre-suicide party for me.

Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.

When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”

But I want a great pre-end of life. I want to live on my own terms.Ingrid posing with her Respironics Bi-Pap S/T

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HEY! YOU! MEDIA!: Let’s Make Suicide Awareness Month and World Suicide Prevention Day Inclusive of People With Disabilities

5.  Why is suicide being presented as a solution, rather than a problem, when the people involved have disabilities?

September is Suicide Awareness Month and September 10 is World Suicide Prevention Day. I’m writing this because media coverage over the past year alone seems to warrant an explicit reminder that:

  • We don’t lack awareness of people with disabilities committing suicide; we do allow vulnerable people to feel shame over chronic pain and depression.
  • Our suicides deserve prevention, not encouragement and cultural misrepresentation, as in films such as Me Before You.

What’s the context beyond the medical? What are the underlying attitudes guiding how the media’s coverage of people with disabilities who have committed suicide or who are planning to do so?

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