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The Goldfish | 10:39 UK time, Wednesday, 1 August 2007

This is subject raised by Dave's post Password, and Imfunnytoo in her recent post . Imfunnytoo writes:

I鈥檝e seen parents with children with impairment admit that for most of the first ten years after diagnosis:

鈥淚 just went to sleep every night and prayed that when I woke up in the morning, they would be 鈥榥ormal.鈥欌

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鈥檛 go bonkers鈥

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!

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 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 to that particular incident.

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Comments

  • 1.
  • At 01:12 PM on 01 Aug 2007, Dave Hingsburger wrote:

Goldfish, this is a lovely post and one that raises the issue of self identity along with identity politics. Being gay, in an odd way, prepared me for being disabled. Coming out to myself as the first part of self acceptance, I learned that acknowledging who you are is way more powerful than denying it. So, too, with disability. I have a disability - disability defines me it doesn't confine me - and that's all ok.

  • 2.
  • At 01:18 PM on 01 Aug 2007, Dave Hingsburger wrote:

Goldfish, this is a lovely post and one that raises the issue of self identity along with identity politics. Being gay, in an odd way, prepared me for being disabled. Coming out to myself as the first part of self acceptance, I learned that acknowledging who you are is way more powerful than denying it. So, too, with disability. I have a disability - disability defines me it doesn't confine me - and that's all ok.

  • 3.
  • At 02:29 PM on 01 Aug 2007, Steve Hedger wrote:

I find myself stuck somewhere in the middle here. On the autistic spectrum I have mainstream science telling me I'm disabled and cutting me adrift - there just isn't anything after diagnosis for an adult except a reference to the National Autistic Society. What use is a social club for people with a difficulty in social situations?

On the other side you have the self-advocacy groups, or whatever you'd like to call them, saying that autism is just another way of thinking, and they're no more disabled than people with ginger hair, or people who are good at maths.

At least with a wheelchair you can choose whether or not you like the terminology that goes with your condition - I'm still trying to decide if I have a condition at all.

  • 4.
  • At 05:56 AM on 03 Aug 2007, Glenda Lee wrote:

Something I have noticed over the past few years is that when people are in the middle of a crisis, illness, or other "negative" experience such as disability they say "I just want to get back to my life". Or in the case of people who are caring for someone they say "I have put my life on hold" or "she sacrificed her job to look after him.." and so it goes on. I mostly laugh when I hear this sort of comment. Where do people get these strange ideas?

There is no "getting back" or "putting on hold" I say to these dopey people THIS IS YOUR LIFE right now. It is not some sort of hiatus where time has stopped.

Everything that happens in life and everything we do is part of life including all of the good, bad and ugly. The human race insists on deluding itself by believing that life is supposed to be one big long happy easy party. Denial of anything that is 'bad or ugly' is certainly popular and is the reason why we are rejected.

People have to reject us because we are a real reminder that some people don't ever get their previous "lives" back. And also there are those of us with life long disabilities who obviously never have had a life!!!

But what we know is that we do have lives and often they are more rewarding and useful than other so called non-disabled lives.

cheers
Glee

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