"She doesn't think of herself as disabled," hostile stare at me, "and that's as it should be."
OK.
I was told.
We were all set up to do a consultation when the parent who arrived informed us all the ways that his foster daughter wasn't appropriate for our service. No behaviour problem. No sexuality problem. No intellectual disability.
Yep, he's right, that puts her right out of our mandate. All she was, he said, was a kid with a physical disability who had questions about sexuality. I told him that I could give him a list of resources for kids with physical disabilities and he looked at me and said, "I think I could find those as quickly as you could."
OK, why the hostility? I understand that this was a wasted trip for him - we don't provide the service he asking for, but we've apologized, offered other assistance and he won't stop. Then he figures we need to hear her history of coming into care with him as a foster father. Sure. Why not. I love a story.
But it wasn't much of one. She came into care. He is a miraculous kind of foster dad who brought her out of herself and now you wouldn't believe she's the same girl. We smiled and nodded. He mentioned that she liked looking things up on the web.
I thought, "Why not" and told him to get her to take a look at the OUCH website. I know I write for OUCH and an biased but I think it's one of the best disability sites on the web. I told him it was about disability pride and disability community and she'd probably have fun with their quizzes and their humour.
He leveled his gaze at me and hit me with, "She doesn't see herself as disabled ..." Followed by an icy cold stare and "which is as it should be."
OK, then.
I glanced out and saw her. A nice looking 15 year old girl in a wheelchair. We hadn't met her because he hadn't allowed it. He wanted to check us out first, our service was found wanting, and now they were leaving.
OK, then.
Their early departure allowed me almost 40 minutes to sit back, close my eyes, and sream at him, have the outright fight and debate with him, ultimately tell him that I thought he was a smug over controlling guy who needed to get his own act together before he guided his child in any direction at all.
OK, then.
That done. I thought about it. Have I really gone off the rails? Why is it 'as it should be' that a person with a disability doesn't see themselves as having a disability. Particularly when they do. My friend Susan sees herself as a woman - I know because she was there with me and I asked her. Why is it good and healthy and desireable for everyone else to see themselves as who they are. Gay people see themselves as gay. Black people see themselves as black. Even Shriners see themselves and Shriners for heaven's sake. Self acceptance is part of the package for everyone else and self denial is what's left on the plate for those with disabiliteis.
What would be wrong with a 15 year old girl thinking about herself as a disabled girl? Oh and don't go giving me that 'person first language stuff'. I've never heard anyone say about themselves to themselves, I am a person who's a woman, I'm a person who's gay, I'm a person who's black, I'm a person who's Christian. Disabilities it seems has to go second, after person, because somehow the personhood is supposed to lessen the impact of the word disabled.
Warning, don't ever call me 'a person who's disabled' cause I'm a disabled guy. That's it.
Anyways, back to ranting here. I think it's neglect to have a disabled child and to parent them in such a manner that they spend a lot of time and energy into denying disability ...
"I'm just like you." This doesn't sound like a statement of pride it's like begging you to not notice or comment on my disability so you in your superiority and pity can let me go about the day with my delusion intact and you have your vaulted status reinforced.
Of course people with disabilities are different. Different doesn't mean LESS THAN it just mean difference. And the disability community isn't a step down ... it can't be ... we're not good with steps.
I shook myself, I always win the arguments I have with others in my own head so I felt cleansed by my indignation.
OK, then ... NEXT.
9 comments:
Glad to see you're allowing anonymous comments here again -- I had been getting frustrated because I wanted to leave comments but for some reason could not make the other means of posting comments work for me AT ALL (though I did really try). Though I did understand your rationale for that choice.
Anyway:
It appears that denial of a child's disability can be especially common when the child is hard of hearing. In other words, disabled, but in a way that can be "easy' (in a certain sense of the word) for everyone to cover up. So easy, in fact, that a hard of hearing person can sometimes fool not only others but themselves as well, for years at a time.
Some parents apparently don't even TELL their child that they're hard of hearing. When the child misses things or misunderstands things, they find other ways of excusing it to the child--all trying very hard to make sure the child never, ever suspects there is anything "different" about him/herself, or "wrong" with the way his/her ears work, maybe at most there's something just a little "off" about them in the way that everyone has something just a little bit "off" about themselves--but not, ya know, in a way that makes you disabled or whatever.
But the trouble is, a hard of hearing child IS still different. They're NOT like everyone else. (None of us is, whether or not we have a disability.) Sooner or later they start to notice just how much they're missing out. And just how often they have to "fake it" in order to keep up the pretense of everything being completely "fine" and "normal" the way their parents have oh so very clearly conveyed to them (all without ever saying a word) they're supposed to do. Even when the pretense makes them miserable. So when they miss the entire conversation because the bar is so danged noisy, instead of suggesting they move to another venue where they have more of a chance of hearing or resorting to gestures or writing to smooth things over, they just smile and nod and pretend things are "fine" and all the while they're wondering what's wrong with them, are they a freak or stupid or what, for not being able to do AT ALL what seems to come so easily to everyone else. And they're feeling disconnected, cut off from the group.
So when they grow older and discover their "secret" for the first time, there can be this real mingling of anger, devastation, and relief. Anger and devastation because their parents lied to them by pretending they were "normal' when they actually weren't, and relief because finally they have a NAME to put on the thing about themselves that they always secretly knew was "different" without understanding why. Now that they finally have a name and a reason, they are able, finally, to separate themselves from the problem -- "I'm okay, I'm not weird or a freak or stupid or incompetent, I'm just hard of hearing, and there's nothing wrong with that."
I was lucky to have been born unmistakably deaf. I could (and do) still hear some things, but not ever nearly enough to totally fake it full time the way that a hard of hearing person could if they wanted to -- or if they felt they were "expected" or required to. So I never grew up with those self-doubts about my being deaf. It was just there, a natural part of me and who I am without ever being ALL of me or ever being the thing that defines me. But I've read a bit about some of the experiences that some hard of hearing people can have, and it's really no picnic when people deny their disability instead of just accepting it and helping them deal with it head on, too.
Andrea
wecando.wordpress.com
reunifygally.wordpress.com
Six years ago, when my son was just a wee one and i was still figuring out how to be a parent to a child that the whole world saw as disabled, I met a woman whose teenaged daughter, who also had Down syndrome, had recently died. As she was decribing to me her daughter's life, and all the wonderful things she did, how she was included in school and so on (it did sound like she had had a wonderful life), the Mom said "I don't think she ever knew she had Down syndrome."
This has always seemed really odd to me...my seven year old knows he has down syndrome, his classmates know it, it's not something we talk about alot, but it's certainly not taboo. But for years this woman's words bumbled around in my head and i kept trying to figure out how you could deceive someone for that long...she had just graduated from high school, was in school plays, so it couldn't have been a cognitive "she just doesn't grasp that" kind of thing.
Perhaps the daughter knew, but didn't want her Mom to find out!
In Britain, not so long ago, the polite thing to when one met a black person was to *pretend one hadn't noticed he was black*, and steer away from any subjects of discussion which might bring the colour of his skin into embarrassing relief. Rather as if one was pretending one hadn't noticed he had egg on his tie, or a wet stain at his crotch.
"She doesn't think of herself as disabled" made me think of that.
Now, it's not my business to make a todo about the colour of someone's skin, the fact that he has wheels instead of legs, or even his choice of attire. But neither is it my business to make sure those things are invisible - because they damn' well aren't!! (I win most of the arguments in my head, too.)
Gee Dave, I'm not sure that I agree with you. I'm sure that my son knows that he is disabled though I've never specifically asked him. But I would prefer that he sees himself as a person first and then a person with a disability second. Funny, reading your post reminded me of this piece that I read (http://paradigmoz.wordpress.com/2007/07/23/laughing-at-the-disabled-power-perception-and-prejudice/#more-203) where the author thought that there wasn't even a "disabled community". It seemed like far too effort to even tell him that he was wrong.
AMEN! i'm so glad you posted this... a lot of times our community wants to prioritize advocacy over other things (yes it is important) but so many disabled people are having trouble with their identity that it seems like we should be organizing more around building community and things like pride and culture.
i'm so happy to run across another disabled queer blogger who "gets it" :)
It was the father speaking, not the daughter, so we will never know what she thought. That is disablist. He is a man who chose to parent a child with an impairment, for whatever his reasons were. His unconscious reasons. He is acting out something of himself, through the child he fostered. She had no choice in being parented by that man, and his attitudes. She is silent in this exchange ?
Rant away, you are right !
I guess it was the week for people asserting that they are not disabled - I just had a similar experience with a Deaf guy online: Not disabled?.
Like you, I always win the conversations I have in my head, but I wound up writing to him and telling him how uncomfortable his words had made me feel. He wrote back semi-acknowledging the issue, but on the whole, I think he's just young and hasn't thought it through yet.
Greetings from Phil Schwarz, a friend of Amanda Baggs's, who recounted meeting you in person at long last in a sort of mutual fan-appreciation-fest :-).
We in the autistic community have been un-enamored of the "person first" nonsense for a long time. Another friend of mine, Jim Sinclair, wrote eloquently about it here: http://www.jimsinclair.org/person_first.htm
What I wanna know is, when non-disabled people who insist on using person-first language to us and about us, and who often insist on making *us* do so too, all against our will, claim that all the rest of the disability community, *besides* autistic people, uses and endorses person-first language, what do they base that claim upon? Are there really sectors of the *disabled* population (seemingly as different an entity from the "disability community" as the *autistic* population is from the "autism community", which consists overwhelmingly of non-autistic parents, professionals and clinicians) who use and endorse person-first language under their own initiative?
-- Phil Schwarz (a Jewish Aspie man, who I suppose in some circles is required to describe himself as a person with Asperger's syndrome, Judaism, and masculinity; father of a wonderful autistic teenage son and a wonderful teenage daughter in the broader autism phenotype, and spouse of a patient and loving nonautistic woman, the family's token neurotypical)
Hello,
I'm John from Brisbane, I wrote the Paradigm Oz article mentioned above where, apparently I deny that there is a disability community.
http://paradigmoz.wordpress.com/2007/07/23/laughing-at-the-disabled-power-perception-and-prejudice/
This is not quite what I said, but it is close.
I said the disability community is created and defined by disability workers and it describes their industrial experiences and issues, not the infinite and heterogeneous lives of their clients.
There is a very big difference between denying the existance of disability and rejecting stereotypes of disability.
This article was written in the context of Brisbane political activists claiming the support of "the disability community" to attack a movie that profoundly challenges stereotypes of disability.
Here is an update of the Brisbane "Laughing at the disabled" controversy if anyone has been following it.
http://paradigmoz.wordpress.com/2007/08/31/laughing-at-the-%e2%80%9cdisabled%e2%80%9d-michael-noonan-exposes-his-naughty-bits/
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