Personally, I spent an age in denial about my illness. My prognosis was always uncertain and as such, I assumed that it was a matter of time and effort - positive thinking, careful attention to diet, exercise and rest - before I entered a permanent and complete remission. Everyone around me was only too pleased to support this idea and even after I had been ill for years and the situation had in fact deteriorated, my attempts to talk frankly of this were met with pleas that I must not give up hope!
I’ve seen parents with children with impairment admit that for most of the first ten years after diagnosis:
“I just went to sleep every night and prayed that when I woke up in the morning, they would be ‘normal.’”
That puts expectations on the kid that are next to impossible, not to mention effort by the parent that should have included acceptance of the kid as is, and searching for support systems so both the kid and themselves don’t go bonkers…
Eventually, I noticed that my courageous outlook, my heroic refusal to admit defeat, was actually putting my life on hold. Meanwhile, I had to live with my spectacular failure to will myself back to good health. It took a different kind of courage to face facts and get on with life as it was. Recognising myself as disabled was a big part of that; recognising the difference between my uncontrollable limitations and the limitations that I could actually do something about.
In the comments to Dave's post about a wheelchair-user who declared that he was not disabled, Chris Page wrote:
It's an awkward situation, granted - coming to terms must be difficult - but I wonder whether some newly-disabled people understand how insulting such sentiments are to those of us who were born with "impairments"? Do they think they're too good to be Disabled?I wouldn't have said so had I been asked at the time, but I suppose there was an extent to which I saw disability as some sort of surrender. Whilst there is sometimes a preference for words other than disabled or disability, there is also the belief that our particular shared experiences shouldn't incur any label at all. When Adam Hills railed against the term disability he concluded;
Here's what I think. I think there is an easy and foolproof way to determine whether or not someone has a genuine disability. Simply ask them whether or not they consider themselves to be disabled. If they think they are, they're probably not.It's not that Adam thinks that he is better than other disabled people, but that disability is about inadequacy, an excuse for someone's personal failings. According to this definition of disability, he is undeniably too good to be disabled and indeed, most of us are. I'm sure that at one point, I might have agreed with him.
These days, I'm afraid I think of the scene from the film Brokeback Mountain where having fallen in love and vigorously consummated their passion, our two heroes insist to one another that they are not queer. Where queer is a carries wholly negative connotations, people who would be classified as such by others are inclined to resist the label. However, where queerness or disability is understood as a social and political status as opposed to something that's wrong with an individual, there is no longer any shame attached.
Seahorse wrote an excellent post about this last month in Daring to Disagree where a friend took issue with her describing herself as disabled, as if this was a sign of despair. Readers may also be heartened to read the outcome to that particular incident.
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