Talking to someone with a disability

Carly Findlay with her friend, Paul De Gelder.

Carly Findlay with her friend, Paul De Gelder. Photo: Carly Findlay

I recently signed up for a gourmet food tour in Melbourne. I went on my own -- I have no problems making friends (or sharing delicious food) with strangers. A couple sat next to me as the oysters were served. I said hello, and commented on how great the food tour was going to be.

The man's response to my enthusiasm was, "Been in an accident, have you?" He didn’t say hello or follow up the conversation I'd started. So the whole time I was standing there, he must’ve been wondering why my face was red, and felt the need to ask. "No, I was born with a skin condition", and continued eating my oysters. I thought that may settle the conversation. But the questions continued: "What happens when you're in the sun?”

I’ve always marvelled at how having a visible difference makes me public property to be commented on. You see, I was born with a severe skin condition called Ichthyosis which makes my skin red, painful and itchy, and can be socially challenging. (Detailed information about my condition can be found on the Foundation for Ichthyosis and Related Skin Types (FIRST) website.)

When it’s sunny and hot, more people tend to stare, assume I'm sunburnt and ask me questions about my face. So I thought I'd take the piss a little: "Well, more people assume I'm sunburnt and ask me questions about my red face", I quipped with a smile.

Crickets. He didn't find me funny. 

"No, what happens when you're in the sun? Does it hurt more?"

I answered quickly and then left the couple. I understand curiosity, but I didn't want to be the topic of conversation for much longer. I didn't want to be his lesson in diversity. I particularly hated that his curiosity was placed before decent manners of a "Hello, how are you?" 

Disability and visible difference can be confronting because people are not used to seeing and experiencing relationships with disabled and visibly different people. They see visible difference and disability in the media and assume hero status, or a life to be pitied (Like in those Facebook ‘one like = one prayer’ memes), or worse – a villain status (think Harvey Dent's disfigurement in The Dark Knight).

And too often, people without disabilities are playing characters with disabilities (like Kevin McHale who plays Artie Abrams in Glee) – 'spacking up' as Stella Young puts it. The lack of real disabilities and visible differences, and depictions of normal interactions with these people in the media means there's no fair representation of disability in society.

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While some of you may be curious about people who have a visible difference or a disability, and there may be a certain level of discomfort when you encounter us - for the fear of the unknown - please don't forget your manners when you interact with us. Talk to us like you would talk to those 'normal' people. This is how I'd like to be spoken to:

1. If we say hello, say hello back

Our initiation of a friendly conversation does not give you a right to launch into commenting on our appearance or asking why we look the way we do. I will probably answer your questions – to a limited extent. We don't have to tell you the most personal things about our lives during our first encounter. Don't initiate conversation about our appearance before we do.

2. Don't assume intellectual disability

Don't talk slower or raise your voice or worse, assume the person with a disability or visible difference cannot communicate. My friend Todd Winther, a PhD candidate in politics who also has Cerebral Palsy, says one of the things he dislikes about the first encounter with a stranger is being automatically treated like he has an intellectual disability. Todd has written about the way he has been treated by students before teaching a university class. The assumptions about his intelligence are degrading. 

3. Don't give us a platitude

Don't say: "At least it's not [insert any illness here]", "It's great to see you out and about", or "You're lucky you look normal". And certainly don't tell us you couldn't handle having our condition. Often when I tell people I am not sunburnt but was born with a severe skin condition, they say, "Phew! At least it's not sunburn, I was worried you got yourself so burnt". There's no comprehension (or apology for their initial question) that my condition has any impacts on my health other than the cosmetic appearance. 

Shelley, one of my No Limits mates, has Dissociative Identity Disorder. She hates being told "But...you can't have a mental illness or a disability - you look normal!” "I'm still not sure what I'm supposed to look like?", she says.

Normal is just a cycle on the washing machine, right? 

 4. Don't be offended if we aren't always polite in answering your question about our disability or visible difference - especially WHEN WE HAVE ONLY JUST MET YOU! 

I am not going to be polite all the time. Us disabled people, we aren’t always saintly. We swear, we are rude and we get angry. And so if I'm rude back to you, it's probably because I'm gob-smacked at the audacity of people feeling like they can comment on a stranger's appearance.

My American Twitter friend Carolyn, who also has Ichthyosis, said "People have no business asking. I'll tell 'em what this is but won't answer questions beyond that. I'm 51, so over worrying about offending anyone." And I am too. 

5. If you have got to ask, do it politely. Teach your kids that too. 

If you ask, preface the question with "I hope you don't mind me asking..." or "Tell me if I'm being rude". Certainly leave this question until after polite hellos are exchanged. And thank us for taking the time to tell you about ourselves.

I was in Bondi with my friend Paul De Gelder. He has a bionic arm and leg as a result of a shark attack. The receptionist at the pub asked him whether he had a bionic arm sometime after we got talking to her. She was polite, and he told her a little about it. No big deal. Paul and I later talked about the questions people ask us, and he told me of a woman who wouldn't even get up off her seat to ask him about his arm and leg - she just yelled questions from afar. Not polite.

I know that sometimes you're just dying to know what's wrong with us. And as much as I hate that expression 'what's wrong with us', sometimes I'm curious about people’s appearance too. But I don't ask. There's a girl I see around, she has a facial disfigurement. I smile at her, she smiles back. We probably experience similar reactions as we walk down the street. But it doesn't matter to me that I don't know what's 'wrong' with her. Because, there's nothing wrong, and she doesn't want to be bothered by my question about her appearance. She's just getting on with her day too.

Carly Findlay is a writer, speaker, community TV presenter and appearance activist. She blogs at Carlyfindlay.blogspot.com.

25 comments

  • It's a fairly basic courtesy not to make remarks about another person's appearance or behaviour, I thought. I taught my son that, and explained all the reasons why, and he understood, but he was singular in not making comments about old people, and fat people and different people of every kind. Other parents seemed to struggle with the concept and often had to stop their children blurting "look at the (insert adjective here) person mummy!" but gave no reasonable explanation why it was wrong. Satisfying curiosity seemed to be more important than considering the feelings of others.
    There's nothing unusual about me that shows, but if someone DOES make a personal observation, courtesy be damned. I'll find something personal to ask or comment on about them.

    Commenter
    BC
    Date and time
    March 20, 2013, 12:48AM
    • I see having real empathy as a great central human trait, but it is a pity no one bothers teaching anyone how to best express it.

      Any person with a disability when it comes to children should be the ones to take the initiative. Kids are always questioning and curious of the world, so it is best to appear friendly and positive. Asking "what's wrong with you", or its variations, is quite obvious from their stares or looking. It is something they have one as babies where they are hard-wired to look at people's faces often to sort out relationships of their family from strangers.

      If you sit in a wheelchair, where you are at a similar height, explaining something like "I have sore legs" is usually enough to satisfy. (Anyway, I think they see wheelchairs as some kind of tricycle or child's amusement ride.) I will then often engage with the adult or parent something positive to reinforce the normality of the situation.

      The worst thing you can do is hush them up without explanation as they learn see difference means unacceptable behaviour. By taking initiative by disabled people, then help all others people with disability too. That should be encouraged and avoid many of these problems.

      Commenter
      ariane
      Location
      Sydney
      Date and time
      March 20, 2013, 5:22PM
  • Many years ago, I saw how — by accident — a bloke with a permanent disability who walked with the aid of crutches was pushed and fell to the ground. As nobody offered to help, I picked up one of the crutches, gave it to him, and then I held his arm to help him get up.

    But lo and hold, he got mad (!), yanked his arm away from my hand, and with an angry undertone told me, “I don’t need help, I can get up by myself !”. After seeing my startled reaction he added — still with a serious demeanour — “thanks anyway”.

    I didn’t know how to feel; I even felt guilty because I thought I had done something wrong. I tried to rationalize what happened by thinking that it must be hard for him to receive help, because it may wrongly lead others to believe that he is incapable of doings by himself, and that in turn must hurt his self-esteem.

    Commenter
    MainSail
    Date and time
    March 20, 2013, 8:08AM
    • You had all the best intentions in the world but you did make an assumption that he couldn't get up on his own. The better option would have been offering him your hand and asking, "Do you need a hand getting up?" and allowing him to accept it or not as he chose instead of grabbing hold of him and making the assumption that because he had a disability, he couldn't get up on his own.

      Commenter
      Kit
      Date and time
      March 20, 2013, 9:35AM
    • I had a similar situation on a bus. I asked a woman who was clearly having difficulty getting up if she "was ok?" She screamed back, "Of course I'm not f####g ok!" I guess it's important to word the question carefully.

      Commenter
      ramona
      Location
      paddington
      Date and time
      March 20, 2013, 10:55AM
    • @ Kit

      In a way you are right. But the reason I didn't ask was because whenever I tripped and somebody helped me to stand up, I never viewed it with any negative connotations.

      I suppose that for someone with a disability it must be (very) hard not to view it in such a light fashion — and it's perfectly understandable.

      Commenter
      MainSail
      Date and time
      March 20, 2013, 10:59AM
    • What you dont understand is, every single person, everyone i meet, wants to help me due to manual wheelchair. Most of the time i accept it because i cant be bothered to say no.

      Dont feel offended. He is just sick of people helping him. I get sick of it too. The constant offer of assistance makes people feel pathetic. (Certainly my opinion).

      Commenter
      Liam B
      Location
      Perth
      Date and time
      March 20, 2013, 1:01PM
    • Shit, Liam, now I feel bad - I helped a guy a few months ago who was (I thought) struggling to get up a hill in a manual wheelchair in the blistering heat of summer. My intentions were good, but you have made me realise that I never really thought his situation through, beyond "he's in a wheelchair - you should offer to help". Perhaps I was just doing it to make myself feel better.

      Thank you and Red Pony for your insightful comments, and Carly for her article. We (I) need to have more frank and fearless conversations around this issue! x

      Commenter
      Donna Joy
      Date and time
      March 20, 2013, 4:26PM
  • Thank you for this amazing article - you have summed it up so beautifully!

    I was born with a rare disease that translates to an obvious cosmetic disability, affecting the entirety of one limb. It has been an enormous blight to my lived experience, mainly because of the insensitivity of others. As a child, I remember once hearing a parent tell her child to "not touch" me, as what I had "could be catching" (it isn't, of course). It only got worse from there.

    What has been most irritating and hurtful across the years is the common situation where someone notices and points out my disability, and then when I've explained it to them, they attempt to reassure me by saying something like, "well, it's hardly noticeable". Ahhhh... seriously? You mean it's not noticeable despite the fact *YOU JUST NOTICED IT*? Why thank you. For a second there I was nearly getting paranoid.

    Girls I know will complain about tiny bruises or temporary imperfections to their skin, telling me they feel "so ugly" or "so self conscious", but then without batting an eye will tell me that my disability is "no big deal". Oh really? You're bitching about spending a couple of days with some minor injury, but my lifelong, painful and ugly disability is "all in my head"?

    Basically, if you know someone with a disability, never, EVER try to minimise it, pass it off or, worst of all, tell them they are lucky it isn't worse. (News flash - you're lucky you don't have it at all, so shut up!)

    If you must ask, do it politely and don't feel the need to follow it up with a pat response that makes the world just in your own mind.

    Commenter
    Red Pony
    Date and time
    March 20, 2013, 9:30AM
    • Exactly. Not saying this is the same thing, but I can sort of relate because I went through a period of severe hair loss and a friend could not stop telling me that my insecurity was all in my head and I looked just fine. Then when she started to get a few grey hairs she was telling everyone how she had to go and dye it! It's like she was saying that I just had to live with my cosmetic problem but she didn't deserve to have one herself. Not that I consider grey hair a cosmetic problem, btw.

      Commenter
      Kat
      Date and time
      March 20, 2013, 10:58AM

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