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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#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)!

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