I’m “That” guy on Facebook: Disability Edition

I think we can all share a collective eye roll and groan at facebook arguments.  But, today, I’m “that” guy that started it.  I couldn’t help myself with this one.  Something about the framing  this issue  as if it’s ethical really grossed me out  I had to respond.  I climbed up on my (high) horse and jumped in.  I felt I needed to share it with you.

Here’s a “screenshot” of the fb post.  It’s not really a screenshot, because the button wasn’t working on my computer.  So instead you get a second hand photo of it from my phone.  If you can’t read it, it says “A nice piece about what seems like it’s on the horizon, but is actually starting us in the face.”
And the article is here at this link:
http://www.salon.com/2015/11/28/moving_the_dial_on_whats_possible_when_it_comes_to_extremely_premature_infants_what_we_can_and_what_we_should_do_are_not_always_the_same/?utm_source=facebook&utm_medium=socialflow
fbfeud.png
And here’s what I had to say:

This piece is not nice at all. This piece is ableist garbage. It’s so funny (not really) how ethics when it comes to disability always focuses on the question of when it’s ethical to kill someone who has a disability. I know another word for that concept: Eugenics.

This article reeked of idea that disability is something that is awful, something to be ashamed of, undesirable. Notice the language of the piece “
Unfortunately, at this point in history, most extremely premature infants grow into children who experience a lifetime of cognitive or physical disability” and “…the fetus is defective” as well as “ …sometimes horrible defects slip through…” referring to people who are born with disabilities. All of these sentiments indicate that living with a disability is a fate worse than death! Literally, the argument is that someone is better of dead than having a disability!! There is even garbage in this article trying to essentialize and naturalize this cultural idea of what “healthy” and “normal” bodies are (which as we (should) know is a socially constructed concept) when the author writes “Miscarriage…is one of nature’s mechanisms for stacking the odds in favor of healthy children” even though later in the next paragraph Tarico writes a totally contradicting statement “…sometimes a healthy fetus gets rejected from a healthy mother…” So it seems that nature “rejects” all sorts of different fetuses- no matter if they are “healthy” or not.
This article is awful. Absolutely awful.

Let’s instead think about how to develop social supports for families of kids with disabilities. How to make sure that people with disabilities will always have the services they need like PCAs, PTs, OTs, etc… Let’s focus as well on how to adapt the environment better so it fits all types of bodies not just ones that are considered “normal” and “healthy”. Because it’s not bodies and minds that are disabled, really, it’s environments that cannot accommodate them.

I‘ll leave you with some Rosemaire Garland-Thomson, because she’s really a lot more eloquent than I am and right on the mark with how to consider disability/medical ethics.

The emphasis on cure reduces the culture tolerance for human variation and vulnerability by locating disability in bodies imagined as flawed rather than social systems in need of fixing…..preventing illness, suffering, and injury is humane social objective. Eliminating the range of unacceptable and devalued bodily forms and functions the dominant order calls disabled is, on the other hand, a eugenic undertaking.” (Rosemarie Garland-Thomson)

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