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Monday 8 March 2010


Today in class we discussed disability after reading the memoir 'The Diving Bell and The Butterfly' by Dominque Bauby. Many points came up about how people react to disabilities and it is true that many people see the disability rather than the person. And then there is the flip side where the person must be a hero for coping with such a terrible disability - they are so brave, courageous etc.

As someone with an invisible disability (M.E./C.F.S.) I often feel that I fit into neither group - I am not someone who is judged by my disability but nor am I a completely 'normal' person who can do all the same things as anyone else. I think that for me this has to be the worst situation because I am also having to defend my disability. People tend to believe that because there is no physical proof that I am unable to do something, then I must be making it up. I feel guilty every time I get the lift because I know I look like I could walk up the stairs but the truth is I simply can't (unlike some of the people I know who use the life anyway).

But my teacher brought up an interesting point that perhaps the reason people don't believe me is due partly to the grief scenario - shock, disbelief, denial, anger, acceptance. I go through them all every day but to those who only partial know me I can see how it would be easier for them to disbelieve me, it is a way of protecting themselves from the truth. Because frankly, the truth stinks and my life is hard. So I'll try not to judge them for keeping themselves safe from the truth but I still believe that knowledge gives us answers and perhaps the reason so many people are still suffering from many illnesses and disabilities is simply because people turn away from finding the knowledge and so we will never find the answers.

I'm not sure I've managed to make much sense in this post but I wanted to share some of my opinions with you, however jumbled and confusing they may seem.


Julie P said...

Interesting post, Bethany, especially you're comments and thoughts on 'hidden' disability. I personally think that a persons disabilities are no-one else's nusiness but their own. People make snap judgements on people's capabilities and just because someone looks 'okay' on the outside - ie they don't use a wheelchair or walking stick etc it doesn't mean they are so on the inside - people can be so rude can't they? If you can't do something, you can't do something and that's that. It's not laziness!

Julie xx

Unknown said...

Thank you so much for you comment Julie - I get labelled as lazy all the time (and even if I'm not then it can feel like that's what people really think because of reactions in the past) so really appreciate you making it a point that I am not.