"I guess it's all in the attitude," she said sounding completely disbelieving.
My cousin is coming to Toronto for some medical tests and we are talking on the phone. I haven't seen her in years and, as we aren't a really close family, catching up a bit. I asked her if she knew if I was in a wheelchair and her breath caught in her throat as she said, "Oh, no, I'm sorry."
I explained to her that there was nothing much to be sorry about. My life was a bit more complex than it was before, but that I hadn't been affected that much by my disability. I still have a job, still live in my home, still do what I've always done. Being fat my whole life meant that I wasn't the 'runner, jogger, let's climb a mountain' type ... I was a let's go to a dinner and a movie type - things that are well suited to a life on wheels.
As we talked I could hear the absolute disbelief in her voice. I could almost see her 'imaginings' of life in a wheelchair - and what it would mean to her. But this wasn't about her, this is about me. After a few minutes of trying to convince her that everything really was OK, she sighed again and again congratulated me on my 'attitude'.
I'm optimistic, I've said that here before, but optimistic doesn't mean dim-witted as many seem to think. It doesn't mean that I don't notice how the world really operates, it just defines how I operate within that world. What frustrates me is this 'disbelief' that my life could have as much value now as it did then. This patronizing, "Good on you for holding on to hope in the light of such distressing circumstances" attitude I sometimes get from the non-disabled and more distressingly from some with disabilities as well.
Much of what I believe to be disability prejudice (and, of course. disability self hatred) comes from the belief that a disabled life is a life 'less than' a typical life. We just watched 'Over There' a box set of the television programme set in the present day Iraq war which focuses on a group of young military officers. Near the end of the series they talk about a young man who had lost his leg to a bomb. This guy is back home, living with his wife and child, engaging in incredible acts of physical bravery ... but none of them know that, they are out of contact with him. They all say that they believe in 'death over dismemberment'. They'd rather be dead than a member of the disabled classes.
Now, I don't think that my cousin's sigh meant all that. But I do think that the attitude of 'oh no' that the idea that a wheelchair (or walker or cane or other enabling devise) is a symbol of ultimate humiliation and defeat is a frightening one. Sorry, I don't buy it. Never have.
But I will say that in my cousin's sigh was all that I want to fight against.
Beyond prejudice we need to fight presumption.
One of the most irritating things that I hear is that I "candy coat" this life of mine - I have a wonderful daughter who has had a whole heap of medical issues, and has T21 with a little autism mixed in just for the heck of it...
Our life is incredibly full, rich, and wonderful. We still do all the same things "normal" families do - and we often do them with a vibrant joy that I don't observe in other families.
We aren't to be pitied or held up as heros - we are just living our lives gloriously the way they were intended to be lived.
One day I got a curious remark from a very special elderly woman I know well. One of the things I am sure of, is her complete honesty.She has a daughter with some disability and one day she said about it: "Well, being the mother of such a child is something that's not given to everybody."
She used the word "given"! She didn't say it was sth. cruel inflicted on her. She also tried, wih a lot of hesitation in order to find the accurate words, to explain to me in what way the love for this child was sth. very particular: it was a more intense form of love than for her other children. It brought her pain and happiness, in fact pain and happiness walking hand in hand, as these so often do in life.
I am glad she was so open to me, in the same way that I am glad with what you write about yourself Dave.
Presumptions cause all kinds of problems in life - whether you have a disability or not - but people do seem to go in overdrive on presumptions/assumptions when a disability is in sight.
I remember one woman, a member of the church we attended at the time our son with DS was born, who insisted I was going to be mad at God for giving me a son with a disability because she was mad God because her son had a cleft palate.
It's been ten years now, and I've gotten pretty mad at some people who haven't treated my son respectfully, but, so far, I haven't had any anger issues with God.
She said I would, so I guess it's yet to come ... :-)
Sometimes we just don't know what to say. Sometimes it's nothing more or less than that, ya know? What do you say to someone whose life has changed in a way in which you have no personal experience to draw on to say the right thing? It's the same when people without children are confronted with the "reality" that kids aren't always easy or clean or happy. It's the same when going through a divorce. Unless you've been there, sometimes the automatic response is pretty inane. That's no excuse, though.
The thing is, though, that with some people it's more than "not knowing what to say." What actually seems to happen is that they get this notion stuck in their head that disability is automatically a tragedy and the correct response is sympathy--or, worse, pity. And if the other person doesn't follow the script then THEY (the other person) are doing something wrong or are somehow weird and not normal or they're in "denial" about how much the disability actually bothers them. Or else they're incredibly "brave" for "dealing so well." So they're making all kinds of insulting and offensive assumptions that don't usually get made in the same way about parenting or divorce or whatever. So what Dave is bothered by is not simply people who don't know what to say but who seem incapable of parsing the idea that maybe a sympathetic response isn't even what's needed to begin with. And, further, seem incapable of grasping that too much of the wrong kind of sympathy in the wrong place can even become offensive, even if it wasn't meant to be.
I remember when Gabe was less than six months old...I was in a baby clothing store, and for some odd reason I brought up his upcoming surgery and that he has Down syndrome. (I think I was looking for sleepers without snaps going up the front...anyway...)
The first thing that the sales associate vocalized was, "Awwwww." and then, "I'm sorry". Just as quickly I said, "There's nothing to be sorry about." Obviously, she made presumptions right off the hop.
Anyway, I think most people react in a knee-jerk action to presume a disabiltiy is all-life-ending. It infuriates me beyond belief.
I wish the sales associate could see Gabe now. He knows his alphabet, counts to five on one hand, but knows his numbers up to 10, knows his colors, and signs more than 150 words! He's only 32 months old. My kid rocks at life. The only disability is the short-sightedness from some strangers.
Fascinating thoughts. Thank you. Elizabeth's post over at Ouch is an interesting counterpoint to this, and you're both making me think today. Perhaps I'll even write, too...
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