Disability Teaching a Lesson?
The next Disability Blog Carnival is at Barriers, Bridges and Books. On that blog, Terri recently posted a reminder about the blog carnival, in which she said:
"What have you learned or become that you might not have without and encounter with disability? Have you become a medical expert, education specialist, behavioral manager, mechanic, efficiency expert, law specialist, problem-solver, activist, interpreter, ambassador, poet? Or something else that I haven't thought of....Has your faith, creativity, determination, efficiency, patience, impatience, techno-savviness, assertiveness, connectedness, sensitivity, sense of humor or some other trait grown or been changed? Any of the above? All of the above? None of the above, but something else entirely??"
That question assumes that disability is something that entered your life at some point, changing your life from previously not involving disability, or not to that degree. As such, it is profoundly inapplicable to someone like me.
What if you never had a life without disability?
It reminds me of this video, in which Amanda Baggs says:
"One of the things you mentioned was that there was an advantage in being disabled from birth in that you're doing all your adjustment as you grow. I'd actually take it farther than that -- being disabled from birth, there is nothing to adjust to."
It is this adjustment from a nondisabled life to a disabled life (and I'm using this to apply to those with disabled loved ones as well) that brings those kind of 'lessons' that are relatively easy to name and describe.
Whereas for me, I know things I would not have known if I was neurotypical, but I can't really name them as things I have 'learned since before disability' because there never was any 'before disability'. I was born the way I am. I may have regressed somewhat at 18 months, but even if that was something I'd have perceived as an unexpected and significant change in me (rather than just growing up or reacting to my circumstances) I can't remember that far back. I didn't have the experience of growing up as a standard person, fitting in with others and our society so fundamentally and identifying with the standard tale' of how people in our society live and what they are like. Instead I grew up with others treating me like I should be or should have been the standard person, but I wasn't.
"What have you learned or become that you might not have without and encounter with disability? Have you become a medical expert, education specialist, behavioral manager, mechanic, efficiency expert, law specialist, problem-solver, activist, interpreter, ambassador, poet? Or something else that I haven't thought of....Has your faith, creativity, determination, efficiency, patience, impatience, techno-savviness, assertiveness, connectedness, sensitivity, sense of humor or some other trait grown or been changed? Any of the above? All of the above? None of the above, but something else entirely??"
That question assumes that disability is something that entered your life at some point, changing your life from previously not involving disability, or not to that degree. As such, it is profoundly inapplicable to someone like me.
What if you never had a life without disability?
It reminds me of this video, in which Amanda Baggs says:
"One of the things you mentioned was that there was an advantage in being disabled from birth in that you're doing all your adjustment as you grow. I'd actually take it farther than that -- being disabled from birth, there is nothing to adjust to."
It is this adjustment from a nondisabled life to a disabled life (and I'm using this to apply to those with disabled loved ones as well) that brings those kind of 'lessons' that are relatively easy to name and describe.
Whereas for me, I know things I would not have known if I was neurotypical, but I can't really name them as things I have 'learned since before disability' because there never was any 'before disability'. I was born the way I am. I may have regressed somewhat at 18 months, but even if that was something I'd have perceived as an unexpected and significant change in me (rather than just growing up or reacting to my circumstances) I can't remember that far back. I didn't have the experience of growing up as a standard person, fitting in with others and our society so fundamentally and identifying with the standard tale' of how people in our society live and what they are like. Instead I grew up with others treating me like I should be or should have been the standard person, but I wasn't.
Labels: assumptions, autism, normal parents
posted by Ettina at 2:30 PM
4 Comments:
Interesting. I always feel like, in some ways, i have aspects of both the "born disabled" and the "acquired impairment" perspectives, because i lived undiagnosed until the age of 22, and thus for me there is quite a long list of things that identifying as (as opposed to "becoming") a disabled person enabled me to understand, and perspectives that changed as a result of it - yet, on the other hand, i've had my actual neurological differences all my life, and have never known what it's like to be neurotypical.
"Instead I grew up with others treating me like I should be or should have been the standard person, but I wasn't."
Same here - this is the main reason i think the experience of autistic (or otherwise neurodiverse) people who grew up undiagnosed has so many parallels with that of queer/trans people (not that people can't be both, obviously - indeed i think that the overlap is much greater than would be expected just by multiplying probabilities, and there's probably a correlation).
Sort of like the fairytale of the ugly duckling - except i think i'd have preferred that story to have ended up with hir being proud to be an "ugly" duck...
A very good point. However, don't you feel that having to react (or not) to other's perceptions of you, may have made you grow up differently?
Not sure if you're asking that question to me or Ettina - but, for me, yes, absolutely, in very many ways, and discovering disability identity made *enormous* numbers of things from the whole of my life up to that point make sense for the first time.
I still think i am a very different person from who i might have been if circumstances in my life had not led to that self-identification, tho...
Speaking as a person who has been deaf since birth (and also had ADD, though that was not diagnosed until I was 26), I agree that a person growing up with a disability doesn't really need to "adjust" in the same way that a person does if they "acquire" the same disability much later in life.
However, the fact that I was growing up deaf in a hearing world I think did still shape my life experiences very differently than I would have experienced them if I had been growing up hearing. There were specific skills I learned, such as sign language, that I probably wouldn't have been taught if I had been born hearing instead.
And I think I am probably a lot more tuned in to what discriminatory behavior "looks like" than I would be otherwise, particularly when discrimination is subtle or covert or even unintended. I probably have a somewhat better "bullshit detector" than I might have acquired as a hearing person -- i.e., the ability to tell if a person really means it when they say they will do something (such as making sure you have the disability-related accommodations you really need to have).
So, I don't see the question of "what lessons you've learned from your disability" as being only relevant to people who've become disabled later in life. I think it's pertinent for those of us who've grown up with a disability too (whether diagnosed from early on, or identified later on). The main difference being that we may have to exercise our imaginations more actively.
Andrea Shettle, MSW
wecando.wordpress.com
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