And see, having the experience of both
that kind of disability/difference and one which HAS no real up side...
I consider my DD's "disability" to be almost entirely "disabling" in the sense that it NEVER seems to provide advantage, but continuous disadvantages. It alters
everything about your lifestyle, and this is often not at all obvious to outsiders, but it is nonetheless true. I'd also consider diabetes and seizure disorders to be like this.
It is not just physical disabilities that present that way, though-- not too many people would argue that depression, schizo-affective disorder, or crippling OCD is "sometimes positive."
I really do think that this may be what separates "differences that come with certain challenges" from "disability" in the conventional sense.
I'd characterize my PG child's cognitive capacity as the former. In some settings intended for NT individuals, she faces challenges that they do not. It certainly isn't much of a social bonus for a young adolescent girl. On the other hand, in OTHER situations, she is at a significant advantage over her more typical peers.
I'm unsure that it is correct to group "natural ways of being different" in with those differences which, in an earlier age, would have had PROFOUND consequences in terms of survival.
KWIM?
I can certainly see how ADD/ADHD is a way of being "different" which presents some significant challenges in some settings, and likewise, how being on the autism spectrum might or being blind, too. I can't see how having diabetes, a primary immune deficiency, or a severe mental illness is in that category. I don't think that severe, brittle asthma confers ANY advantages under any conditions.
Anyway. I do agree that destigmatizing
all ways of being "human" is ultimately the goal. Maybe that involves no longer categorizing those conditions which are NOT universally "limits" more properly as challenges in some settings and advantages in others, and recognizing what is meant by "major life activities."
Understand, though, that this runs the very real risk of "ranking" things which are "really" disabling and those which are... er... well, "not real" and that is
NOT what I am suggesting at all. I'm very definitely NOT suggesting that having ASD isn't a limitation in very real, very painful, and very significant ways. But I think that recognizing that it can also be a STRENGTH is a good thing.
On the flip side, considering more carefully how other hidden disabilities may come with NO real advantages is perhaps bundled with a greater perception/inclusive awareness of what is meant by "difference" or "disabling" to start with.
JRA-- disabling, no real "up" side. ASD-- advantage in some ways, disability in others.
In the latter, perhaps it is up to families/individuals to decide whether or not to "treat" the condition in order to gain greater normalcy. Much like cochlear implants are somewhat controversial in the deaf community-- the experience of difference
and of disability are irretrievably intertwined and highly idiosyncratic by individual circumstance.
I'm sure there was a point to this ramble, but anyway... I seem to have lost that particular thread.
OH-- I know! Greater awareness in general. Greater compassion and tolerance for all of the ways of being different. Wouldn't that be awesome?? I don't see it happening anytime soon, of course... but it would sure be awesome. Wouldn't it be great to have this conversation?
My child is/has {difference.}-- Can you tell me about what that means for your child in this setting?
Yes-- I'd be happy to!
Maybe we just need for all of the 'experts' in the world (both instant and credentialed) to finally grasp that INDIVIDUALS who live with various conditions/differences
become experts in those conditions/differences. We
are the best source of information about what it signifies in most settings. I wish that this was recognized. Advocacy would be so much easier if we didn't have to fight just to be heard.
