'Disability can have an upside'
By Peter White You and Yours |
Rabbi Lionel Blue can see the upside of his epilepsy |
Here's a conundrum for you. What do these people have in common; Rabbi Lionel Blue, commentator Murray Walker, writer and poet Gwyneth Lewis, rugby player Kenny Logan, comedienne Liz Carr and the Archbishop of Canterbury?
Tough one, eh!
Well they would all admit, more or less reluctantly, to having a disability.
If you had asked an equally diverse group 50 years ago, this almost certainly would not have been the case.
The idea of categorising such a disparate group of people as disabled is pretty new; it really starts in the late sixties, when a variety of activists began to campaign seriously for two things - more rights, and more money.
It was at this point that the more politically astute among them realised that numbers mean power.
Until then - if they had tried to make their voices heard at all - wheelchair users, blind people, people suffering from psychiatric problems, people who found it difficult to learn to read, had campaigned alone, as single-issue groups, to use the modern jargon.
Sense of solidarity
But whether driven by expediency or not, a definite sense of solidarity has been forged around disability over the past few decades, reinforced by the successes that have been achieved; anti-discrimination legislation, a commission to fight for your rights, an awareness in all political parties, companies, shops, utilities, that you ignore disability these days at your peril.
So, is the concept of disability a coherent one, and how similarly do people who accept it as a label look at life?
In the You and Yours series What Disability Means to Me, we have asked the people whose names appeared in our quiz at the top of this piece to think aloud for us about how disability has affected their lives, and perhaps formed, or changed the kind of people they are.
One of the most interesting results of this has been the almost universal reaction from our contributors that their "disability" has improved them in some ways: made them more perceptive, more "emotionally intelligent", as writer Gwyneth Lewis puts it, while not claiming that definition for herself.
Both the religious leaders we spoke to felt that their direct experiences potentially made them better at the pastoral side of their work.
Deaf in one ear
Dr Rowan Williams is totally deaf in one ear, and while recognising that this is a comparatively minor disability, feels that it has made him think about communication, and how disability can create tensions on both sides.
Dr Rowan Williams is deaf in one ear |
"When you are with people who have real challenges, deep disabilities, you are left being put in touch with your own vulnerability and your own uselessness, your own lack of omnipotence," he said.
With Lionel blue, who has epilepsy, the issue is not so much communication, as embarrassment; but being Rabbi Lionel Blue, he has tried, wherever possible, to see the funny side of life.
"I think I was grateful for epilepsy," he said.
"Although materially it has been an inconvenience, spiritually it has taught me a lot.
"For example, I know what it is like to be at the wrong end of the stick, to need help, to go through a difficult patch in life.
"And I don't suppose I could have got that knowledge very easily in any other way.
"I think without it I'd have been a much smugger person."
Form of attack
For Liz Carr, seeing the funny side of it has become her job.
I think about what do I want to do, what makes me happy - and I'm quite grateful for that Liz Carr |
Liz is a wheelchair user, and is happy to acknowledge that she has used humour both as a form of self-defence, and at times as a method of attack.
But she too has turned issues which many would only see as negatives, into real positives.
For instance, at 14 she was told that the muscle-wasting disease which meant that she had to use a wheelchair would mean she would be likely never to grow old.
She is not sure what effect newer developments will have had on that prognosis, but says the information dictated the way she subsequently lived her life
She said: "I do live everyday as if it could be the last because I'm always terrified, you know, I don't think about the future, I don't think about retirement and pension and buying a house and all that kind of thing.
"I think about what do I want to do, what makes me happy. And I'm quite grateful for that."
Bouts of depression
Not everyone taking part in the series necessarily accepts the word "disability" as an accurate description of them.
Gwyneth Lewis has periodic bouts of clinical depression, and realises that on the surface the debilitating effects of such attacks could well be seen as disabling.
But in tune with the determination of many of our interviewees to take pluses from their situation, she feels that if she listens properly to what her depression is telling her, it can be a real asset in helping her to live her life in a more constructive way.
She said: "Every time I feel a bout of depression approaching I feel frightened and appalled.
"But even with my dread of the disease and the horror I always feel at its approach I believe that depression has been a profound enabler in my life.
"Depression takes you out of the action of everyday life for a while and asks you what you are going to do about your circumstances."
Gwyneth Lewis also sets out one of the most clear-sighted descriptions of depression, a difficult concept for people like me who have never experienced it, that I have ever come across.
Note, this article first appeared on BBC Online in July.
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