Here’s a quote from the film Sleepless in Seattle, it’s said by Tom Hanks after his wife dies:
‘Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out.’
It’s a quote about grief and loss, despair and hopelessness. But it is a situation that I think many of us with long term illnesses and disabilities can identify with. Every day is a challenge when you are disabled.
A few years ago, there was a comedy show called Little Britain it had a character in it who leapt out of his wheelchair whenever no one was looking. I know many people think that is true of a lot of disabled people. As if wheelchairs were a desirable choice. This comes from a misunderstanding of disability. Being a wheelchair user does not always mean a person cannot walk or stand. Wheelchairs can be aids to enable people to travel further when their legs give out.
Wheelchairs can be used on days when someone’s legs are not working, but that they be able may walk a little on a day they feel better. Even some paraplegics have a little use of their legs and occasionally are able to stand or at least move their legs. This does not make such wheelchair users frauds, rather it means that they use a chair because most of the time they cannot use their legs. They use a wheelchair because their legs do not function properly and reliably.
When an illness causes someone’s body to stop working normally, they need to use aids to walk or even use a wheelchair. When they are in a good spell they don’t. I remember when I was first ill and yet still able to walk a little, but struggling to do so. I resisted using a wheelchair for a long time because I didn’t want people staring at me. Instead I stayed at home in a chair for days on end, only being able to go out for very short walks about once every two weeks. Eventually, my very sensible wife said to me, ‘think of them as go further wheels,’ I did that and it was so helpful. Of course, things have changed, I can no longer walk at all. But years ago, when I could, I had to accept that a wheelchair made distance achievable. Distance in that case being anything over 25 yards.
If you have never experienced the massive extension of distance that comes from illness then let me try and describe it. When I first couldn’t walk many steps, I would sit in my chair then I would need a wee. The chair was 5 yards maximum from the toilet. I would look down the short hall at the toilet door and it felt like I was staring at a mountain. I would have the same feeling about making that distance as you would feel about climbing a mountain. When I finally managed to get there and back I used to think there should be the same national celebration Edmund Hillary got when he climbed Everest. OK, I jest, but you get the point.
Someone with a nervous system that is failing can have a good day where they are able to stand or walk short distances. But their long-term prognosis is still the same. Someone with damage to their spine can have intermittent use of their legs. Comedies like Little Britain may have been very funny, but they gave people the idea that disability is a choice. You choose if you use a wheelchair and you only do it when people are looking. Sort of a sympathy and benefit seeking idea; what rubbish! No one in their right mind would choose to limit their life to a wheelchair. The world is designed for legs not wheelchairs; life shuts down in a wheelchair.
Disability is actually much more like a curse; it certainly is not a choice. Don’t criticise and doubt disabled people. Instead, if you meet a disabled person who happens to be positive and happy then they are brilliant people. If you see a wheelchair user managing to walk a few steps, rejoice with them in their short bit of freedom.
Any time a disabled person gets through a day, they are overcomers, they are to be applauded. They should be congratulated on finding the good in their situation and making the best of the good days, not criticised if they ever look bright or well or are able to ever leave their wheelchair. Don’t condemn them to more limitations than they already have. Rejoice with their triumphs and be with them in their sadness. Disability is a curse, but shared and understood it can be overcome to a degree the limitations can be managed. Not totally and not all the time. There will always be that element of: ‘Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out.’ It’s a challenge, but one that can be overcome. Be a support and encouragement that is what disabled people need.
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