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

And Now a Word from the FuckAbility™ Research Council on “The Upside”: For Your Condescension

A photo of a janky wheelchair overlaid with: FOR YOUR CONDESCENION, When it comes to the 2019 Palme d'Visage Award for "Most Half-Assed Casting in a Film Depicting a Disabled Character," the Choice is Clear....THE WHEELCHAIR in The Upside © 2019 talesfromthecrip.org

Going to see The Upside?

Don’t miss an opportunity to share your feelings about the film’s bold casting decisions. #CastBoldly

Print the graphic above and hand it out at the theater!

Sample messages for sharing your excitement:

Access icon in blue and white“I haven’t seen such bold half-assed casting like this since last year’s Palme d’Visage winner gave us A Pair of Raybans as the lead in Blind: Based on a Mall Store Called The Sun-Glass Hut by The Food Court.”

Access icon in blue and white“Do you think Streep could do what The Wheelchair did: Cradle Cranston’s ass while wordlessly conveying every stereotypical cliche about living with a disability? I scoff at that!”

Access icon in blue and whiteMatt Damon said it was okay!”

See you in beautiful downtown Switzerland in March for the Palme d’Visage Awards!


FuckAbility™ Research Council (FARC) is a piece of letterhead housed on the Tales From the Crip website. FARC’s mission is to raise awareness of hollywood’s lack of awareness that many disabled adults fuck in groups of one or more. All views expressed are subject to change and denial.

TryHarder™ Magazine: The Ally Issue

TryHarder™ Magazine: The Magazine for People Who Need to Try Harder, 2 cents

Issue No. 3: The Ally Issue

or You Can Lead a Nondisabled Ally to The Google But You Can’t Make Them Use a 100% Familiar Search Engine to Find Available Access Tools Themselves

In which Mx. Crip-Manners points out how good manners make good allies


“We’re super-excited you’ll connect us with disabled women for our project! We don’t know how to clean out a conference room though so can you take that on?” 

2 cents symbolYes, it really is that basic: Do you invite abled guests to muck out your space for your shared meeting or event? I’m guessing you don’t. You consider your space to be your responsibility.  Just as I, a wheelchair user, don’t expect my walking guests to bring their own chairs. But you expect your disabled invitees to either resolve your access barriers or teach you granular how-tos. I know this from decades in grassroots women’s organizations and philanthropy.
That’s not okay.
My considered position is the result of 20-plus years of waxy bummer build-up that comes from, first, being invited to be a partner or guest — and then being tasked with “the early shift of ableism” to clean up inaccessible messes.
Expecting this is just plain bad manners from you, otherwise decently-funded organizations, including foundations. Isolated requests for help, particularly under clearly difficult circumstances, are not the issue.

Did You Know?

Disabled people are not magical access specialists. We learned stuff. By learning. We are always learning new stuff. By learning. As Crip-Yoda says, “Learn you must.”  #CripTips


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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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An Open Letter to Advocacy Funders: #FundDisAdvocacy Because Disability + Ableism = Structural Discrimination

 

Want in on the conversation about ableism? Check out what disabled advocates, civil and human rights activists, and philanthropic leaders had to say at the Twitter chat on 10/12/18 about philanthropy and inclusion. Then make your voice heard at #FundDisAdvocacy.


A Crip in PhilanthropyFoundation funding for disability advocacy dropped 23% between 2011-2015. Disabled people were the only group to see a decrease. Most funders are “aware” of disability but do they see ableism and structural discrimination? How do we make funders see disability civil and human rights as areas of actionable, urgent advocacy? A first step is recognizing disability as a constant but hidden set of variables in nearly all formulas for civil and human rights. 

I’m writing to you in my capacity as a community organizer – which is another name for a social justice fundraiser.
I believe you and I share common ground on the importance of advocacy:
We know that the great civil and human rights gains of the last century, envisioned and organized by the grassroots, were built to last through the courts and legislation, and they will continue to be the battlefields for preserving them.
I’m writing because disability civil and human rights advocacy is missing from your funding portfolios.
The first step in changing that is frank communication.

When you do not explicitly say “disability” in funding advocacy, you send a message to us: Deny, disown, and downplay your disability identity. That denies all marginalized communities access to our hard-won legal tools and, worse yet, our expertise in using them.


You may understand this letter, at first, as pertaining to a discrete group: disabled people. But it is a fundamental mistake to think that civil and human rights for any community can be fully achieved if we neglect, forget, or disregard such a basic human condition as disability and allow it to be the “natural” cause of poverty and abuse. If we are not safe or free to be vulnerable, then we cannot call ourselves safe or free. Our society is not safe or free.

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TryHarder™ Magazine: The Takeaway on What I Learned From John Hockenberry’s #MeToo Essay, “Exile on Crip Street”

TryHarder™ Magazine: The Magazine for People Who Need to Try Harder, 2 cents

Issue No. 2: The Takeaway or Please, Take This Essay Away

In which The Crip shares 2¢ takeaways from John Hockenberry’s 7,000-word essay about the loss of a high-status career identity that was purchased and published by a pretty damn high-status periodical.


2 cents symbolTHE TAKEAWAY! Hockenberry says none of this is justification for offensive behavior toward women but it sure seems like he does:

“Being a misguided romantic, or being born at the wrong time, or taking the wrong cues from the sexual revolution of the Sixties, or having a disability that leaves one impotent at the age of nineteen—none of this is a justification for offensive behavior toward women. But is a life sentence of unemployment without possibility of furlough, the suffering of my children, and financial ruin an appropriate consequence? Does my being expunged from the profession in which I have worked for decades constitute a step on the road to true gender equality?”

2 cents symbolTHE TAKEAWAY!  Hockenberry thinks “unemployment” is the same thing as “not getting the same high-status work I once had and still want.”


Did You Know?

You may be working three jobs but those aren’t real jobs if they’re not prestigious. Take note of this, low-wage workers. #CripTips


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