Saturday, May 1, 2010
To Tell or Not to Tell
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 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.