There’s No Cure for Gretchen Lowe: I Could Be Taken From You

There's No Cure for Gretchen Lowe
Gretchen Lowe, age 35 at the 90’s midpoint, was not dying, as she was at pains to point out more frequently than she would have wished. She had muscular dystrophy, a distinction often lost on those who equated strength with muscle mass, consciousness with cognition, and worth with productivity. A growing chorus assumed this would be her preference, death before disability, rather than the indignity of grappling with that terminal condition from which the chorus-members, themselves imperfect, suffered: life that is both enviable and bleak, and always, always unfair in distribution of the same.
Like so many of her friends, Gretchen had swapped one coast for the other after college and she left DC, a city of increasingly impossible winters, lawyers, and three years of an uninteresting technical proofreader job, and moved to San Francisco, a city of manageable weather, bike messengers instead of lawyers, and apparently no editorial jobs. Five years in, she was the administrative director of a small free clinic for women and had cycled through four shared flats before the Recluse, her boyfriend, gave up his Pacific Heights studio and moved in, more or less, to Gretchen’s two-bedroom flat on a quiet street in Cole Valley.
Like ancient Rome, San Francisco was a city of hills and, with few exceptions, honored its dead by housing them firmly and in perpetuity outside its official boundaries. Gretchen lived and worked firmly within those boundaries, mostly because taking public transportation to and from work everyday took what limited energy she had. She did have an increasingly hard time breathing and walking, her grip was undeniably poor, her fingers lacking in dexterity, but she had an even harder time imagining herself dead, or wanting to be dead.
But she had no master plan, no Disability for Dummies to be her guide, just a lifetime of experience in a body that was weak, breathless, and clumsy, and getting more so year by year. So Gretchen did what was practical and what made life – her life, none other’s – worth living. She kept to the flatter parts of town, used the bathroom before she left home and work, and thought more about her next meal than eternity. In this last concern she had the unwavering support of her family; Gretchen did know how to find a decent restaurant.
She needed this particular skill on this particular evening because her mother, Alice, had flown in. Festive feelings aside, Gretchen had serious misgivings to broach, misgivings that were about a clinical research opportunity that divided them called “Genetic Reparative Therapy.”
When Alice had first excitedly called her daughter months before about GRT, Gretchen couldn’t bring herself to say a hard, “No.” She herself didn’t know exactly why she was flat-out rejecting this “cure” — or why she couldn’t tell Alice no. She’d certainly done it before.
It wasn’t until she burst into tears after half-watching an old Sally Field movie about a mother not leaving her daughter that the feelings coalesced within her as a single as-yet-unspoken fear: “I could be taken from you and you would never get me back.”
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#WSPD2018: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

2018 UPDATE: STILL ALIVE

STILL OPPOSED TO EUPHEMIZING DISABLED PEOPLE BY NORMALIZING OUR SUICIDES THROUGH LANGUAGE

I’m still disabled, still degenerating, and still filled with joie de crip, but even if I weren’t, I still wouldn’t be buying the double-speak that calls my suicide “a rational choice,” “death with dignity,” and “ending my life on my own terms,” while a (seemingly) nondisabled person’s suicide is “a public health problem.”

The terms we use in talking about an issue set the terms of the debate. Suicide is a public health problem. Distorting that through sophistry marketing language feeds suicide contagion.


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

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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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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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?

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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NotPeople Magazine Presents: Star Trek: The Next Intervention

NotPeople Magazine cover with a picture of a pleading Captain Jean-Luc Picard from Star Trek: The Next Generation. Top reads: "The Assisted Suicide Policy Intervention Issue!" Side-by-side with photos text: "Captain Picard Intervenes & It's Patrick Stewart HOT!"Captain’s Log: Stardate 20150808.naptime. The Enterprise is en route after refueling at Carnitas in the Al-Pastor system, but before reaching the Reflux Cluster, we’ve picked up a warning call from the Federation ship Ventilator. The decoded message tells us that a pro-assisted suicide ship, The Good Death, is in the vicinity. We’ve sent them the standard response, U-1st, but The Good Death remains as quiet as a tomb. Then it suddenly appeared on the Bridge’s screen.
Captain Picard on the bridge looking toward the screen.“Tell me what I’m looking at on the screen and how that man can STILL be so damnably handsome.”

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The NotPeople Magazine Rationalest Man Alive Interview: Peter Singer Gets Notpersonal With A Respironics Bi-Pap S/T

Parody People magazine cover announcing NotPeople's Rationalest Man Alive! Peter SingerAs part of Tales From the Crip’s new series, 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. These fascis — fascinating ideas are just the tip of the iceberg of why Peter Singer is gracing the cover of NotPeople magazine as the Rationalest Man Alive! 

RBPS/T:  Welcome to the United States, Dr. Peter Singer, and all Bruces from Australia.

PS: G’day.

RBPS/T: We’re going to have a rational discussion!

PS: Rational.

RBPS/T:  Rational.

PS: Rational.

RBPS/T:  You’ve been named NotPeople’s Rationalest Man Alive 2015. How does this make you feel?

PS: Rational.

RBPS/T:  Any plans for keeping the title in 2016?

PS: I don’t make plans more than 28 days ahead.

Coming Up in the Interview! 

Peter Singer as you’ve never heard him!  

“Your bizarre stereotypes about Australian people are getting in the way of me explaining why infanticide is the rational choice for parents of disabled infants!”

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