I read an article about the perceptions of disability by Cam from CurlyPops last week. The article is about how we can forget we have a disability because we get so used to living with it and it’s when we encounter curious people that we remember there’s something ‘wrong’ with us. She pondered how people perceive her.
While I am used to the chronic illness component of my disability, and only notice half the stares and comments, it is often my friends who notice it more than me. And I guess it’s then I am reminded I am so visibly different. When my friend and I went to Jebediah she asked me in a serious tone “when we are out tonight do you mind if I just let loose and give someone a serve?”. I was puzzled at this, thinking she had a behavioural problem I was not aware of. I asked what she meant. She said she’d heard some guys making comments about me in the restaurant. I had not noticed. The night didn’t ensue a chance for her to give anyone a serve. Maybe next time!
Since doing work in the disability community, I do notice the way people stare at my friends. Actually, before that, I was fiercely protective of a colleague I am close to at work – a number of people were asking me about her illness. I realised that this is probably what people who know me may experience. I mentioned this to my colleague, and she said that so many people ask her about me too! We had a laugh. I digress. When I am with my friends with disabilities, I notice the stares, the parting of the crowds, the condescending ways in which others speak to us, the pity faces, the low expectations of us, and the assumptions made.
I wonder whether people warn others about their friends with disabilities – to quell their surprise and to mitigate questions. Perhaps.
I went out with a friend recently – she used a wheelchair. We met one of my friends out, one she had not met before. When my friend in a wheelchair left, my other friend said to me “so, is she always like that?”, making a hand gesture. “Like what?” I asked. “In a wheelchair”, he said. I was a bit surprised he felt the need to ask. There was no malice in his question, just curiosity. “No”, I replied, and left it at that. I wondered why he needed to know, why was it important? And why did he ask about her wheelchair when he’s never been concerned about my appearance (to my face).
Cam made a great point in her article. She saw someone else with a similar disability to hers, and wrote “Then I had my most ridiculous thought. I was sad that someone so young had to live like that.” While I haven’t thought this about people with disabilities, I once said to my Dad that I thought it was sad that Muslim women in Australia felt the need to wear hijabs or niqabs. He told me that they are so lucky they live in a country that allows them the freedom to dress how they want.
This wisdom has stuck with me and I think it can be applied to people with disabilities too. We’re in a society where disability isn’t something to be ashamed of, or to take pity on. When I meet someone tells me it’s a shame I look the way I do, I tell them that I am not dying from my illness, I am living with it the best way I can.