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.

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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.

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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.”

I know I’m not one of the experts. I don’t have a degree in anything disability related. I’m not a scholar or in academia. I’ve just lived with my degenerative condition for over 50 years and am now, through imagination and empathy exploring that experience as a member of one of the first generations to reach this age and beyond.

In a society in which “disability” is an increasingly professionalized construct/brand — whether in industry, academia, government, or non-profits both grassroots and institutional — even my capacity for an examined emotional life seems to not quite qualify me to be an authoritative voice on that life.

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I say this to make my experience heard. To be visible even though I’m an amateur crip. To claim a space for myself in bioethics, a field that often radically misjudges my quality of life.

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I know how to say, “I feel like a condemned building when my genetic identity – my blueprint – is carelessly equated with unbearable suffering by ‘experts.’  I don’t like how it feels to hear that it’s a given I should be demolished in a gentrified genetic future.” I’m clear on why I say it: So that I will have said it.

I say this to make my experience heard. To be visible even though I’m an amateur crip. To claim a space for myself in bioethics, a field that often radically misjudges my quality of life.

I don’t expect my feelings, as expressed, to be shared. I don’t expect them to be popular. I’m well-aware that my life is the offal menu item in a chicken nuggets world. But I do want bioethical experts to have access to information about how I feel because their own premises and conclusions are highly subjective, however well their insider jargon provides a cloak of seeming objectivity. My position of experiential insider/institutional outsider is a great counter-balance for bioethicists who spend much of their time interacting with a relatively small group of scholars and research professionals, and focusing on theory.

I don’t think my disabilities are in any way desirable or wholly constructed by prejudiced attitudes. Nope. If you threw me into some un-peopled realm, I’d still struggle to breathe and zip my pants up. I have real, genuine limitations. 

I also have real, genuine emotional reactions to hearing a stranger assign me and my disability to the list of lives that suck to such an obvious extent that simply saying the diagnostic name explains the full and horrifying scope of the suckage. I have feelings about being named as suckage ipsa loquitur, the suckage that speaks for itself.