"Tell the truth," I was challenged, "there are times that you wish you weren't disabled."
I had been trying to explain the concept of 'disability pride' to someone who was determined not to understand. I kept getting hit with things like, "What about Fetal Alcohol Syndrome? Are you supposed to be proud that your mother was a drunk?" Beyond the offensive nature of that statement and others that followed, I'd somehow been sucked into a conversation I didn't want with some one I didn't like and ended without an exit ramp from the topic.
Finally, after explaining, for was I had determined to be the very last time, that being proud of a community, proud of overcoming history, proud of the 'fully incorporated me' ... I was hit with the big question that lingers around in the minds of others - about all minorities. "I'll bet black people sometimes wish they were white, don't they? I"ll bet gay people sometimes with they were straight, don't they? I'll bet women sometimes wish they were men, don't they?" It's the trump question that doesn't get asked as often as it's thought. I was stunned by the question and angered by the flash of 'Ah, ha! I've got him,' in her eyes.
I sat back in my wheelchair to decide if I'd continue or just say 'to hell with it' and return to my tea. But, the gauntlet had been thrown. I said, evenly, not wanted to sound as angry as I was. "Yes, of course, I've wished to be different than I am. I've wished to be without disability, without any difference at all. I've wished away my birth into the life of diversity that I've lived almost since my first cry. And those wishes are meaningless. I would never have wished away my 'sissy ways' if I hadn't been subject to brutality. I would never have wished away my 'attractions' if I hadn't been in fear for my life and livelihood. I would never have wished away my disability if I hadn't been constantly subject to pitying stares and withering glances. It takes time, you see, to understand that I was wishing away the wrong thing. I should have been wishing away bigotry and hatred and self righteousness. I should have been wishing away conversations like this one - that tell me that pride in myself is a foolish idea. I should have been wishing away a lifetime of discrimination. I wished away, not who I was, but how others reacted to who I was. I wished away, not selfhood, but the actions of hoodlums. I wished away pain inflected, not identity experienced."
And let's be honest. I've wished away a lot of stuff over the years. I've wished away the need to work for a living. I've wished away parents who weren't born royal. I've wished away cars that didn't start on cold mornings. I've wished away the concept of calories in cakes. I've wished it all away. Isn't that part of human nature. Isn't that what it is to respond to frustrations. Let's be clear a moments wishing, an instant of imagining isn't real - it's just what it is, a safety valve. A place for rage to go. A place for a moments rest in a difficult world. A place, visited only for an instant, and then fled from. Though I sometimes wish to be different than different, I don't desire it. I don't long for it. I don't dream of it at night.
She left feeling that she had offended me. And, indeed she had. I think partly because I know that she thinks of me as wishing that I could walk out that door like she does, that she thinks I spend my life wishing to be more like her ... when in fact ...
I'll let you finish that yourself.
22 comments:
I think you have every reason to be proud. For one, you rock. And these "don't you wish you were like me" type of questions are the epitome of arrogance.
"And if 'ifs' and 'ands' were pots and pans, there'd be no work for tinkers!"
Often, when I answer that question with: "Actually? No. Not really..." I get dirty looks. As if I have a fatal moral failing ... As if, by not spending my hours working and longing for a cure (which doesn't exist), I'm somehow taking joy in being a burden on society. When what I really wish for is a society where I have equal opportunity to contribute...
What a great post and so utterly clear.
I love this post! That is exactly how I feel and I didn't realize it until I saw it written out. You are such a wise man!
"....I was wishing away the wrong thing. I should have been wishing away bigotry and hatred and self righteousness. I should have been wishing away conversations like this one - that tell me that pride in myself is a foolish idea...." A-frickin'-men!
(P.S.: Finally figured out my Google account, so goodbye Kris S.--hello kstableford henceforth.)
. . . you wish you had been in conversation with someone else???
...I wish away "normopaths".
And I wish that some people would not find pleasure in bigger TVs, more video games, more money, more technology, more holiday time used for extreme sports, when all they do is acting ecoistically towards other people around them.
In some familys you just have to have a house a car and a child. And than the child is cared for by a daycare mother while the mother or father sit at home on the sofa watching TV. My godmother is a daycare mom, sometimes the children get there in their stroller with two handys and a pack of cigaretts lying beside them.
I wish away with people who are that selfish and consuming.
Julia
Love it, by far one of my recent favourites. Well put....well done!! Cheers to you!!
Wow... Whenever people say/imply that the disabled wish they weren't, I always think to myself, "You would NEVER say that a black person wishes to be white, that a gay person wishes to be straight, or that a woman wishes to be a man..." Looks like I was wrong. Somebody not only thinks it, but dares to say it aloud. Unbelievable. I'd have a hard time continuing the conversation from there. Their elitism clearly isn't limited to the disabled, but they believe that EVERYBODY wishes to be more like them.
If I lost everything I'd ever wished away in a capricious moment, I'd be without a job that I love, an education that I value, a family, friends, religion... Everything that matters to me would be gone.
I had this conversation with a friend once:
Her: You were in my dream last night! It was so crazy...
Me: Was I walking?
Her: Yeah! How did you know?
Me: Everybody seems to dream about me walking. I never have that dream, though, and I think it's weird that everyone else does.
Her: Well, isn't it nice knowing that we all want what's best for you?
I was caught off-guard, and I don't do well caught off-guard. I basically dropped the topic there, and I've been kicking myself ever since, for failing to respond better. I didn't feel upset with her, I just felt misunderstood. Wish I would have helped her to understand me better.
Dear Dave:
Well said! Thank you for putting into eloquent words what I have struggled to communicate.
Colleen
One question was not asked. How many have ever turned to the person asking a question like that and asked, Do you wish I wasn't disabled in your eyes, or is it that you cannot face your own disabilities as wel as mine?
Thank you for saying it so well.
Very well put.
Interesting post Dave.
I wish away my pain but I don't wish away the interesting places that my accident/disability has lead me.
Does that make me a hypocrite?
Excellent post - excellent conversation. You handled yourself very well - like always!
I like wishing away the calories in cake!!!! I'll join that club. But your conversation sounds like any conversation a parent might have with a child (guess which is which).
I've had (just a few) similar conversations about whether I wish my son did not have Down syndrome, and how I must regret the things I'll "never have". The most memorable was in a training session where a support worker insisted that I must regret that he would not give me grandchildren! I tried the "I would wish for other things" approach, got nowhere, and ended up telling her that I simply found her question offensive ... at which she was offended! HadI been her employer, I would have sacked her. She was paid to 'support' people with Down syndrome every day ... and obviously failed.
Jill
I love messing with people's minds when answering that question. Because without my disability, I wouldn't be who I am and I like who I am. It makes their minds melt.
I've had a long break from reading, and it's good to come back. You identify things so precisely.
I don't think the people who ask such things (or would, if they were less utterly obtuse than your interlocutor this time) grasp that even acquired disability can only be not-me for so long, and then it becomes, like a quirky sense of humour or thinking in one's native language, 'me' - and that 'me', even where it's inconvenient, is generally preferable to 'not-me'. When 'not-me' is preferable, it's generally because:
"I wished away, not who I was, but how others reacted to who I was. I wished away, not selfhood, but the actions of hoodlums. I wished away pain inflected, not identity experienced."
Nor that we are whole packages, not paper dolls to be assembled with different pieces.
Of all the things which are 'me', and not quite conventional, one I wish away most often; but rarely because it betrays principle, only because it betrays me to others' contempt and cruelty. (It's really not as it should be that one unconventional but largely harmless characteristic causes me more anguish than the occasional hideous lapses from principle.) Doing and being are such separate things.
So well put. I have wished away things, and really what I am wishing away when I feel like that is frustration, discrimination, lack of understanding e.t.c. At the same time, had it been possible, if given a choice I would have said no I don't want to be disabled. This is not of course possible and when it comes to conversations with the kinds of people you were having that conversation with I don't tell them that I would rather not be disabled because it seems to give them a sense of superiority. It seems they're not really asking "do you wish you weren't disabled?" but rather "Will you admit that I am a better human than you?"
I often wish things were different but not in the way 'they' think. I have done things Im not proud of, have been hurt and disappointed by people I wish had treated me better, but what is done is done. My experiences have made me who I am. If my son had been born 'normal' I would have gone back to full time work, he would have had been care for by others because I would have been busy. Because of his disability I have had time to enjoy him, to rejoice in his accomplisments, to share his tears. I will never be free of my caring role but with that role comes more love & joy than I would have experienced without it. I dont have the right to wish for a different life for my son. This is the one we have. My only real wish is that the world would see what I see.
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