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.” Continue reading →
“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.”
“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.”