23 May 2011

Perceptions of disability

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.


  1. Good post Carly. I think it's natural for people to be curious about anything that makes a person different to them. Whether it be their accent, the way they look or their mode of transport. We like to have answers for everything. Everything. I think the more people that ask questions then the wider the understanding becomes. If more people understood that not all people in wheelchairs need them 24/7 then people would be less likely to hurl abuse at someone parked in a disabled car park without a wheelchair - except for the guy jogging bag to his ute with a carton of smokes. And my friend that uses a wheelchair would stop using his "oooh, look I can walk, it's a miracle" trick in niteclubs. I guess sometimes people think it's more polite to ask questions behind someone's back. And kindness can be mistaken for condescension. But assumption is so common and pretty stupid yeah? Assumption comes from ignorance. Although I can't relate to having a disability, I can relate to assumptions. I can also relate to the feeling of wanting to give someone a serve for treating a friend poorly. for whatever reason. Not because they are disabled but because they are our friends.

  2. Great post, Carly! When I have to go out in my wheelie, I generally turn my blinkers on and pay little attention to who is looking at me, other than to smile if I happen to accidentally catch someone's eye. I am not at all offended if somebody wants to ask questions about my condition, but don't like to be looked at like I'm a sideshow. I don't need people to take pity on me, but I often need their understanding to be able to go out when wheelchair bound. It's a hard balance to find.

    I think society can learn to walk the line between ignorance and understanding basic elements that can help a disabled person in a public place; such as recognising that a seated person can't see past a wall of standing people, or that a person uses crutches or a cane might need a seat in a situation where there are few available. All that takes is for people to exercise a little common sense. Rather than asking something vague like "is the person always like that?", someone could just as easily ask "do you mind if I ask about your friend's disability?". The first comes across as fairly rude and vague, but the second implies a caring curiosity and also an opportunity for learning.

    Overall, people with disabilities are no more alike than people without them. I think it's only fair to approach everyone that comes into our lives with a kind and fresh slate, rather than indulging any assumptions about their appearance, or race, or age, or gender, or intelligence, or sexuality....

  3. I'm sorry you and your friends have to go through crap like that. As you say, to an extent it's understandable. As people we are naturally curious about others (particularly kids, who are just honest!). But some people can be cruel or just rude. I honestly don't know how you deal with that on a daily basis. I must say that when I first met you, I noticed your skin for a split second (but I'd read your blog so it wasn't like I had 20 questions or anything.). And then I didn't notice any more, because you were so clever and funny and articulate. You're one cool chick.

  4. I find I get quite offended if people come straight up to me and say "What happened to your face?", or things like that. When I was younger I used to make up sarcastic stories to answer the questions with (eg. I was bitten by a baby shark), which possibly wasn't the best response. Not so many people ask anymore, and I don't get quite as offended as I used to (unless the people are really rude of course).

    I do find I get incredibly protective of my boyfriend's Auntie though - she has Down's Syndrome. I have bitten heads off quite a few people who have said mean things about her when we go shopping together!

  5. I don't mind at all when people ask me questions directly. What I don't like, is when they make assumptions... such as "Do you have..... (insert ridiculous medical diagnosis here)"?

  6. I find this whole conversation really fascinating...

    I remember introducing my best mate who I'd known forever to a friend that I'd met in another circle, and after my best mate left the other friend said:

    "Why didn't you tell me?"

    "Tell you what?" I asked, genuinely puzzled by the question.

    "That she was in a wheelchair"

    Seriously taken aback, I had to think about it - why HADN'T I mentioned it. Eventually what I came up with was this:

    It was the least interesting thing about her, and it didn't matter, so there was no reason for me to mention it.

    For every person out there who is an ignorant twat, there must be someone who just doesn't see your disability - who only sees the person that you are, your personality, your sense of humour, the kindness and love you have to share, your shocking taste in music, your fabulous taste in clothes, your questionable taste in men.

  7. Honestly---- I think people should be cut some slack. We are wired to recognize things (and people) that are different than our norm. It is a evolutionary tool used to protect ourselves. And it isn't easy to turn off. I don't think it is often meant with malice.... just curiosity triggered by a need for safety.

    And the reason people ask behind the person's back is because they feel guilty for their question. That's them trying to overcome their natural interest....

    I wouldn't call people "ignorant twats" (as the previous comment) there are areas where everyone is somewhat ignorant. Instead I would try and use those opportunities to educate them.

    As for the negative comments. Well those people are horrendous for doing that--- and there is no excusing it......

  8. I think that it's natural for people to be curious about something or someone who is different. However, this doesn't give them the right to be rude or ask 21 questions. Most people wait until the person is out of earshot because they don't want to seem or offend the person that they are curious about.

  9. Carly, another great post!
    My kids are quite young (3 and 6) and when they see someone in a wheelchair they do stare and often the 3yr old will loudly ask why that person is in a chair with wheels. I tend to be truthful with them instead of telling them to be quiet. I often wonder if i am doing the right thing? Kids are naturally curious, which is great but I also want to teach them they we all come in such different shapes and sizes and looks!

  10. @Belinda in my personal opinion, you are doing exactly the right thing. It only takes a couple of sentences to explain to a child that a person in a wheelchair, or who looks different, isn't a monster, just somebody who has been injured or might have been born that way. One thing that I find frustrating is when parents quickly turn their kids heads away, or admonish them for staring, but don't offer the child any sort of explanation to satisfy their curiosity. I think your efforts to give your kids the truth are commendable :)

  11. I don't think that {most} people mean any harm by being curious about peoples disabilities. I for one would want to know if I was going to be meeting someone who was in a wheelchair or something. That way if any special accommodations are needed we could do so before hand instead of trying to figure it out in front of the person and risking them feeling awkward.

  12. Thanks @Hayley! Being a parent is such a hard job lol but i know i want to bring up my kids to have manners, kindness and to accept everyone the way they are.

  13. @ Alexis of NorthOnHarper

    "I wouldn't call people "ignorant twats" (as the previous comment) there are areas where everyone is somewhat ignorant. Instead I would try and use those opportunities to educate them.

    As for the negative comments. Well those people are horrendous for doing that--- and there is no excusing it......"

    "Ignorant twat" is my way of describing the people who make negative, rude and assume that disability = less than somehow.

    I don't have any issue with people who don't know - or are polite in their enquiries. Not knowing is one thing - ignorance is quite another.


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