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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Depression and Suicide Do Not Come Standard With the Progressive Disability Package

A few weeks ago, Alice Wong asked me, a fellow person living with a progressive neuromuscular disease (NMD), how I would respond to someone with an NMD who was saying they wanted to commit suicide.  This was my answer.

Depression is not a standard feature of living with a neuromuscular disease (NMD) or other progressive disability.Depression & Suicide Do Not Come Standard With the Progressive Disability Package Depression is not a standard feature of living with a neuromuscular disease (NMD) or other progressive disability. Do people living with disabilities also experience depression? Yes. Anyone can have depression and you are no different in deserving treatment and relief for it. Thinking that you alone can help yourself with your depression through suicide is a tragic form of “overcoming.” If finding the right treatment for your depression proves difficult, it’s not proof that your disability makes you different from other people. It’s not proof that, for you, suicide is a rational choice. No. It’s proof that depression is difficult to treat for vast numbers of people. Like you. It's free and confidential to contact the National Suicide Prevention Lifeline anytime. You are not a medical prognosis or a checklist of functional abilities. You're a person. Who is in terrible pain now and deserves relief. Like everybody else. If you're in crisis: 1-800-273-TALK (8255), 1-800-799-4TTY (4889) https://www.facebook.com/800273talk/ @800273TALK © 2016 talesfromthecripblog.com

Do people living with disabilities also experience depression? Yes. Anyone can have depression and you are no different in deserving treatment and relief for it. Thinking that you alone can help yourself with your depression through suicide is a tragic form of “overcoming.

If finding the right treatment for your depression proves difficult, it’s not proof that your disability makes you different from other people.

It’s not proof that, for you, suicide is a rational choice. No. It’s proof that depression is difficult to treat for vast numbers of people. Like you.

It’s free and confidential to contact the National Suicide Prevention Lifeline anytime. You are not a medical prognosis or a checklist of functional abilities. You’re a person. Who is in terrible pain now and deserves relief.

If you’re in crisis:

1-800-273-TALK (8255) , 1-800-799-4TTY (4889)
@800273TALK
 

#CripLit Excerpt from “The Copier God Unleashes the Flood Waters”

Another Excerpt From There's No Cure for Gretchen Lowe a novelAs the West-Hesperidan Free Clinic’s Administrative Manager, Gretchen was the closest thing they had to fundraising staff now that their Director was on stress leave. She was supposed to represent the clinic at these house party things but here she was wandering on the edges, again, frankly worn out just from hauling herself in the door. Here was a question: Why does philanthropy so often require climbing stairs?

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Better the Rights I Know: Part 1 of Why I Oppose Assisted Suicide Legislation

All of us know that our healthcare options are limited by the boundaries set by a for-profit healthcare industry. I’m justifiably skeptical of proposed assisted suicide legislation that was written and supported by the healthcare industry. Particularly when they are marketing it as a civil right that just happens to be the $300 alternative to more costly options.

Assisted suicide legislation, modeled on Oregon’s law, is once again up for a vote in the state where I live. I look at assisted suicide legislation as a public health issue that will affect thousands of people in the state of California alone. Consider just three factors in combination:

1) California’s fastest growing demographic is people age 60 and up.

2) Elder abuse is on the rise while investigating agencies such as Adult Protective Services (APS) caseworkers are already dealing with unmanageable caseloads.

3) A physician is not required to be present when assisted suicide drugs are taken but an heir may be present and help administer them. (“Self-administer” is a term that does, in fact, allow for assistance in taking the drugs.)

This is the real-world context where proposed assisted suicide legislation would be implemented. All of us know that our healthcare options are limited by the boundaries set by a for-profit healthcare  Continue reading

I Want Them to Want Me Because I Will Need Them to Need Me But If That’s Not Going to Work, I Want a Lawyer.

There's No Cure for Gretchen Lowe

Every time Gretchen saw the forms on her desk at home, a wave of resentment rose. How did she know what it was like to use a feeding tube? Or a ventilator? Or have minimal brain function, for god’s sake? It was like asking an eight year-old to sign up for – or against – puberty.
Oh sure, she fumed in the dark, awake and annoyed. Tomorrow, Dr. Gabriel would repeat the official line: She could choose all medical interventions. She could elect to have whatever she wanted.
Oh, that was such bullshit. It wasn’t really her choice at all. The problem wasn’t too much extraordinary medical treatment, it was the limits of ordinary medicine to worry about, mostly financial. She didn’t have a problem being kept alive through artificial means now – she’d never seen a dollar bill push out of the dirt in spring – so she didn’t see any reason to assume she would resent it later on.

“Dear Valued Healthcare Provider,

“I’m glad everybody’s so concerned about honoring my choices. I choose to have my medical care continue regardless of ability to pay or insurance coverage, deductibles, prescription benefits, or other cost issues….”


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