My FEDup™ Rant: I Have Feelings About My Body Being Regarded As a Tear-Down in Your Genetic Gentrification Scheme

A composite image of a color photo of the author at 5 years old: a blonde, white girl in a rainbow skirt and vest, and a purple sash with INGRID in gold glitter, clutching a diploma and bookbag. Above her is a CONDEMNED banner graphic. To her left, a sign reading Danger, Biological Hazard; to her right, a vintage sign of a strong man on a field, Only HEALTHY Seed Must Be Sown! Check the Seeds of Hereditary Disease and Unfitness By Eugenics

 

I’m FEDup with feeling like my feelings aren’t really essential components of conversations about bioethics.
About a year ago, in the midst of a cross-disability Human Genetic Engineering webinar that I was a support staff person for, one (not all) of the panelists named several disabilities, some congenital, as examples where you’d want HGE to be available. One of the conditions named was muscular dystrophy, the umbrella term that my own unnamed disorder falls under. I took the panelist’s choice to name each to mean that they were conditions that are particularly undesirable. There was a vague mention of parents opting out of children who have these specific conditions. (I’m in favor of enthusiastic consent for all parenting, including the parenting of disabled children. It’s the singling out of only certain children that needs to be addressed very carefully.)  
I had some feelings about that, which I have since translated into the image of the tear-down in the gentrifying neighborhood. I explained my feelings in the Q&A – though I didn’t have questions, really — and then I felt afterwards like I’d made it weird. It was a murky boundary thing; if the panelist had mentioned his own disability rather than mine, I might have disagreed but I wouldn’t have had such an emotional reaction.
It may not be a terribly marketable skill but exploring and describing the emotional landscape of being my particular type of disabled person is what I know how to do, though I usually think fiction — #criplit, specifically — is better suited to the task than anything expository. There is emotional terrain in the development of bioethical and other disability policy, law, and research — as there is in the policy, the legal analyses, the studies, and all of the work-product items — and it deserves representation. That’s what I’m trying to do here.
I can do it because of privilege: I’m white, have a college degree, and the time/money to write this; this all adds up to a baseline expectation that the world will agree my feelings matter. I also grew up in a family that, however messed up, was an oasis from ableist BS and — most importantly — treated my feelings as valuable and in need of care.

But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied.


One of the webinar folks sought me out at another event subsequently and was kind enough to say that my comment had value. But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied. I was simply not prepared to get hauled into a disability justice-branded webinar as Disaster Exhibit A while I was sitting at my DREDF desk.
If I could respond to the panelist, here’s what I’d say: “To be very clear: Difference in emotional reactions is a good thing, I’m not pleading for conformity here. But I have a problem when feelings aren’t identified as such. I get it — muscular dystrophy is frightening or repugnant or whatever to you. Some folks with MD hate it. But it’s not a given. It’s a feeling. And you presented your feeling as a fact. You’re regarded as a bioethics expert, plus you’re disabled yourself. That’s why you harrowed up my feelings so deeply.”
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My FEDup™ Rant: Oh, Goody, a Debate About Whether I Should Be Allowed to Breed

FED UP TM Ideas worth ranting about

 

I’m FEDup with “debates” about my sexuality, my reproductive choices, my existence.  There is so much to love about social media and one of those reasons is the experience of going on Twitter to quickly check my popularity see what I can do to better the world and finding an objective discussion underway regarding whether someone like me should be “allowed” to reproduce. The person who asked the question may not even understand that, by placing my reproductive choices and existence within the frame of public approval, they’ve reinforced bias against me, a woman with a congenital disability who lives “like that.” Check out another guy who asks rational questions just like you did.


Screenshot of "Should disabled people be allowed to have children even if there is a risk of passing on a medical condition? Discuss. 1:41 AM - 21 Fed 2019


I’m not answering on Twitter because — unlike when I was in my 20s, 30s, 40’s — I no longer feel required to justify my existence just because somebody decided to have an “objective” “discussion” about whether I’m really worth the hassle.

Yup, even when your purpose is ostensibly positive, how you frame the conversation matters. Growing up with muscular dystrophy means I’ve heard more times than you can imagine that my particular disability places me — of course! — on The List of Lives That Suck. What’s newer or less personal to you is very different to me as a woman with a congenital disability. So here’s an excerpt from a longer past post that elucidates where I’m coming from. Continue reading

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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There’s No Cure for Gretchen Lowe: Whoever Wrote the Regs Was a Frigging Genius

When the new Beetles came out, Gretchen had kicked around the idea of ditching all of the cab business and getting a car. Since cars came with lots of options but none that made the car driveable by her, she and the Recluse realized the car would have to be modified. Gretchen heard that lots of disabled people got financial help for such things through Voc-Rehab.


Look. You work. You’re not really eligible to be disabled. Air-quotes.


One sleepy post-lunch hour in her clinic office, she gave in to an impulse and looked up the number. When no one picked up at the main number, she worked her way through the extensions until a deep, annoyed voice said hello. That one call into the San Francisco office of Voc-Rehab pretty much cured any hope she had of even minimal financial assistance. The call also showed how employment was a universal solvent on the human stain of disability, at least where government agencies were concerned.

The counselor had more to say, nasally, on the overall lack of money available and went on to say that he himself was legally blind and had been waiting five years for a computer he could use. To do his job. Voc-rehabbing people who were legally blind, for example. So complaining to him was not really something he would be real open to hearing. If she didn’t mind.

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There’s No Cure for Gretchen Lowe: Dignity Is No Accident(s)

Another Excerpt From There's No Cure for Gretchen Lowe a novelThere was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.

Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
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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)!