Wednesday, September 13, 2006
Quality of Life for People with Disabilities
A wheelchair user in Tasmania with a mobility impairment wrote on the web that, until he was able to get a wheelchair, he had no life. Now that he has a wheelchair, he has a business and a family and can join in life like everyone else.
The young man in the photo is giving a wheelchair mobility skills clinic in Romania to teach others how to get around in wheelchairs.
Unlike other populations, people with disabilities can only advocate for themselves when they have what they need, whether it be equipment, personal assistance or technology.
This has been a huge barrier in making progress since the very people who need to tell society what they need cannot do so since they don't have what they need. This paradox makes members of the disabled community extremely vulnerable.
It has also contributed to the myth that there is either no quality of life or a low quality of life if you are disabled. The truth is that quality of life is not reported as greatly diminished by those with disabilities in most medical studies. This is true across the board, whether it is an acquired disability or one from birth.
So are dealing with a non-issue? No, that's not true either.
We still face enormous obstacles trying to get the proper resources for ourselves and others so we can have quality of life. For example, I need my wheelchair and my special computer in order to work. Without those pieces of equipment, I would be unable to be productive and my quality of life would suffer greatly. So, I might add, would Stephen Hawking's quality of life be nil without those same things.
So it is true that one can argue that I would have less quality of life if I did not have that equipment. But that's a different issue than saying that I would inherently have no quality of life because I am disabled.
I think that what confuses people in this quality of life discussion is that they try to define it according to able bodied standards. They take the lowest common denominator of a person confined to bed or without adequate care and then argue that it would be cruel to ask someone to live like that.
This argument does two things: it promotes stereotypes of what it is like to live with a disability and it also condones depriving people with disabilities from receiving the equipment or care they need to have a quality life.
To break out of these stereotypes we need to think outside the box. We need to remember that improvements in equipment and technology and care now allow people with disabilities to live in ways never dreamt of before. We need to set aside our assumptions that requiring care of any kind diminishes us or our quality of life. It is a different, but not inferior, way to live.
If we reframe our assumptions, we can move past the negative portrayals and images drawn by those who argue that those with disabilities have no quality of life and emerge on the other side with new paradigms for lives of dignity.
It is the lack of access to equipment and care, housing and employment, church and society, that results in a lower quality of life. It is not the disability.
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2 comments:
Good points. If we don't have equipment, we're not mobile. It's true that the reason we havent been able to advocate as a group is that some of us don't have any way to do it, which is the exact reason the rest of us need to speak up.
There are many stereotypes still out there and the more severe the disability, the more people think you have no quality of life. But it's the person's attitude toward the disability that is the biggest factor.
Bill
Amputee
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