Today I will be on a conference panel speaking about self-advocacy with regards to disclosure of disability, so that's been on my mind lately. I thought I would address the general topic for BADD as well.
While the concepts of "passing" and "having an invisible disability" have been useful to me in negotiating and feeling secure in my own identity as a disabled person (autistic with a side of various mental health stuff), there are limitations to these concepts. Chally and Amanda articulate many of these limitations very well. Some recent events in my own life have also prompted me to reconsider the definitions of disability (in)visibility and the utilities of disclosure.
For some non-autistic people who talk about disclosure, disclosure is this magical thing which will prompt all the non-autistic people to start becoming nice and accommodating towards us.* Most actual autistic people know better. Still, I do advocate disclosure, and not only for the potential accommodations/understanding (which is great, of course!) I've come to realize that being open about disability is also, in fact, a tool which fights internalized ableism, perhaps the most pernicious form of ableist oppression.
Six months ago or so, the idea of my being on a panel about autism and disclosure would have been laughable to me, and I doubt I would have agreed to do it at all. The idea of my being any kind of expert on disclosure still seems somewhat absurd to me, given how frequently I've mucked up disclosing in my own life. By and large I've tended to err in the direction of not disclosing, often waiting until some kind of disaster occurred. While I intellectually "knew" that there was nothing shameful in being autistic, my actions often belied this belief. I too often treated my diagnosis as a Secret (capital S) to be carefully guarded. Because, of course, being autistic did feel shameful to me, despite my pro-neurodiversity beliefs. I can do well passing most of the time, I told myself. So why bother disclosing unless I absolutely have to? Why take the risk?
As I began graduate school last fall, I embarked upon a new cycle of angst about disclosing. I constantly worried about if and when I should tell my new classmates and professors. Would they treat me with condescension, or outright discriminate against me? Would they not even believe me in the first place, because I can do a good job of pretending? The to-tell-or-not-to-tell question became a source of anxiety which equaled or even surpassed the stress of adjusting to graduate school in a new city itself.
I angsted in particular about disclosing to one person. Finally, around mid-January, I disclosed to this person. Only to be told that xe already knew, for a variety of reasons which included my own behavior and communication style. And I have generally thought of myself as being able to pass really well! But clearly, my "invisible" disability wasn't quite as invisible as I thought it was, to this person at least (who, by the way, is not a psychologist, neurologist, or anything of the sort).
This surprising turn of events was oddly liberating, and since then I've become significantly more relaxed about the whole thing. I'm realizing that the whole disclosure business doesn't have to be as much of a Big Deal (capital letters) as I once thought it to be. I'm more cognizant of the probability that a lot of the people I interact with are recognizing that something is different about me anyway. And that's okay. As is explicitly identifying myself as autistic.
I'm certainly not naive enough to think that disclosure will make everything better. In fact, it really bugs me when non-autistic autism "advocates" talk as though disclosure is some kind of magical panacea which will make everyone more understanding, as I mentioned before. I'm fortunate in that I have yet to receive any reactions to my disclosure which are downright insulting, but I know that probably won't always be the case. And that sucks, deeply. That's one of the reasons I'm deeply committed to eliminating ableism in our society.
But for most disabled people, fighting ableism begins with ourselves. We are implicitly and explicitly taught from birth to view disability as awful, tragic, and shameful. That's damned hard to undo. I'm still working on it with regards to my own disability, and I certainly still have a ways to go in terms of fully acknowledging and dealing with the privilege I have as a non-physically disabled person and as a kind-of-sort-of-"passing" person with neurological/mental impairments.
I don't think I'll ever get the whole disclosure business down perfectly or anywhere close to it. I doubt I'll ever know for sure when the "right" time to disclose is. As long as autism remains stigmatized, I'll probably always hesitate at least a little bit before disclosing. But I hope that over the upcoming months and years I will continue to be more forthcoming about my diagnosis than I have been in the past. Not just so other people will understand me better--though that would be great--but so that I can continue chipping away at my own internal ableism. Because being autistic (or having any other disability) should not be a shameful secret. It's bad enough that some people treat my neurology as shameful. I certainly don't need to.
*Yes, most "advocates" don't put it in those terms exactly, but I've read/heard far too many non-autistic people treat disclosure as a panacea, without acknowledging the potential discrimination we open ourselves up to when choosing to disclose.
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7 comments:
I suppose there one question people should ask themselves, does it cause anxiety to reveal?
If it does then you are not sufficiently confident about yourself and that doesn't make for a good advocate.
I am confident enough, but I don't go over board to the point of making it the first thing I say to a stranger. I don't hide it either.
If it is relevant it comes up, if it isn't well then it isn't.
The worst thing is when you get "the voice" and are spoken to as if you are a two year old or a puppy.
Great post!
I've always been a really open person about all of my "stuff" including the disability stuff. The way I look at it - not everyone can or wants to disclose these things, and since I feel comfortable doing it and like doing it, I see it as one form of activism I can readily partake in. I can *do* the educating part of activism that is so difficult or annoying for others to do.
So, yea, I would never tell someone else that it is up to them disclose and talk freely about their disabilities. But since it works for me to do it, I try to do it as often as possible. Because it does help to educate people and break down stereotypes and make people aware that "yes in fact this chick I know deals with XYZ and I don't think any less of her so I shouldn't of all these other people with XYZ", etc.
In short: Yes. This.
Yes, people can often "tell". They may not know what it is, may not have ever heard of autism, but they know they're seeing "something".
It's like how a lion can scan a huge herd of antelope, and pick out the one with an injured leg. If lions can do it, so can humans. It's worth noting that not all the humans who detect the difference are planning to attack. (Just those who have predatory motivations.)
Thanks. This is an issue that I have been struggling with a lot. It took me a long time just to admit to myself that something wasn't right... And I admire your bravery.
But for most disabled people, fighting ableism begins with ourselves. We are implicitly and explicitly taught from birth to view disability as awful, tragic, and shameful.
thank you.
Disclosure is tough, because the discrimination is real. But at the same time it's hard to fight the discrimination when people's stereotypes aren't questioned.
It's your choice. It should be your choice. As difficult as it may be for you to tell if the choice you're making is right or wrong, there's no one who can make a better choice for you. This is not to suggest that you would be looking to someone else to make that choice; but there will be others who try to tell you which choice is right at any given time.
Thanks for this post. I really mean that.
Also, I find this interesting because myself and a couple ASAN-OSU members gave a presentation at Multiple Perspectives last week (currently working in a blog write-up for the central Ohio blog... producing writing is more laborious lately). We were talking about disclosure, and Brenda Brueggemann was in the audience, and what she suggested during discussion really struck me -- that often, people think of disclosure as this "one-sided" thing that's solely the responsibility of people with disabilities. So, it's puts all the burden, pressure, negatives, etc., on us. But really, we can't control what others do with the info we provide, which is why disclosure can be such a trying thing.
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