12 March 2013

Tips for having a conversation with a person with a visible difference or disability.

(This picture was found on one of the Ichthyosis Facebook communities I belong to.)
I know I keep banging on about the comments I get about my appearance. The assumptions that I'm sunburnt or burnt. And the way that people just ask me about my appearance before they even say hello. Believe me, I'm not exaggerating, it does happen. And while some may believe these commenters are just curious or concerned, or get the impression that I am forever defensive, it's bloody tiring. (But it does make for good writing fodder.) How many of you are asked why you look the way you do before you're asked how you are?

The other night I went on the Footscray Rickshaw Run. I went on my own, and I have no problems making conversation or friends with strangers. There were about 20 people who attended. A couple were at a bench with me as we were served oysters. I said hello, mentioned how great the food tour will be.

The man's response to my food tour enthusiasm was "been in an accident, have you?". He couldn't even say hello or follow up the conversation I'd started. Rude. So the whole time I was standing there he was wondering why my face was red, and felt the need to ask.

I replied "no, I was born with a skin condition", and went back to eating my oysters. I thought that may settle the conversation. He didn't need to know more about me, he hadn't even taken the time to say hello!

But then! "What happens when you're in the sun?", he asked.

It's been particularly hot in Melbourne lately. A heat wave, you could say. It's been over 30 degrees for more than two weeks. And when it's sunny and hot, more people stare, assume I'm sunburnt and ask me questions about my face. So I thought I'd take the piss a little:

"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?".

Sigh. I answered quickly and then left the bench. I understand curiosity, but I didn't want to be the topic of his conversation for much longer. There was food to appreciate. I didn't want to be his lesson in diversity. I particularly hated that his curiosity was placed before the decent manners of a "hello, how are you?". I always marvel how having a visible difference has meant what's so personal to me has become publicly commentable.

I read an article about a mother who took a long time to get to love her son who was born with a severely disfigured face. The article states:

'Advocates say that honest stories like theirs help others to accept the disabled.

"Being surrounded or having contact with people with disabilities could have made the transition easier her," said Lawrence Carter-Long, spokesman for the National Council on Disability. "Part of the problem is [the disabled] are segregated, if not by institutions, then by attitudes. We don't see them in the work place or in school, so the fears and the worries are more pronounced. It's not an issue of malice, but of proximity."'

Lawrence Carter-Long is right. The disabled are segregated by institutions and attitudes. A fear remains, and intrusive curiousity seems acceptable.

I remember a few years ago just after I started this blog, a reader told me that she didn't know how to approach someone with a disability or a visible difference if she saw them in the street. She told me that if it wasn't for getting to know me through my blog, she wouldn't know how to react to me if she encountered me in person. "You'd talk to me like you would anyone else you meet", I suggested. I guess I'd make her nervous. She may not know where to look, and I may make her uncomfortable just by being someone she wasn't used to seeing. I was pretty disappointed and felt that I hadn't done my job in breaking down stigmas through writing here. Because my story wasn't enough, she was still afraid of disability, and how to react on encountering a disabled person, due to her lack of exposure.

And that's the thing. 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 awful 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 - 'spacking up' as Stella Young puts it. (Just writing that term has put the Fleetwood Mac song You Can Go Your Own Way in my head forever.) We just don't see enough real disabilities and visible differences (without scar makeup, I mean) in the media, so there's no fair representation of disability in society.

And that makes it hard for people to know how to act around people who are different, perhaps because normal interactions with the disabled and visible different are rarely depicted in the media. We are people too - getting out to do the shopping, going to work, spending time with friends, and even enjoying a rickshaw ride in Footscray.

So while some of you, your family and friends 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.

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. Yes I will probably answer your questions, with limits, but I won't be impressed if "fuck you're sunburnt" is the first thing you say to me. 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 happens to have Cerebral Palsy, told me 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 when he's taught a university class. The assumptions about his intelligence are quite 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 "oh, 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?

And similarly, don't assume chronic illness or disability only affects older people, and look surprised when you meet a young person living with a condition. Michelle says "With the cane most think I have a sport injury, "too young" is the usual. When I explain [I have Dysautonomia] they mostly look uncomfortable. People always seem shocked that you can get really ill so young, like there's a 'sick' age."

4) Don't be offended if we aren't as 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 arent always saintly. We swear, we are rude and we get angry. Frankly, if you're the sixth person to tell me I'm sunburt today, I will be feeling pretty over it. 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.

Don't expect me to be your lesson in diversity.

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 maybe thank us for taking the time to tell you about ourselves, don't just say "I thought you were [sunburnt is the word that I usually get]" and then walk off.

I was hanging out in Bondi with my friend Paul De Gelder last weekend (see below). He has a bionic arm and leg, as a result of a shark attack. The receptionist at the pub's front desk asked him whether he had a bionic arm, sometime after we got talking to her on our sign-in. She was polite, and he told her a little about it. No big deal. Paul and I got talking 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 peoples' appearance too. But I don't ask. There's a girl I see around the cafe I frequent, she has a facial disfigurement. I smile at her, she smiles at me. 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.


Related reading: Our disabilities do not inconvenience you.



  1. I can't believe how rude that man was to you! Good manners get you a long way in life - at least this is what I am teaching my kids.
    And what is normal?
    I am so glad that I have found you blog!

    1. Aww thanks Sam :) I'm glad you've found me too.

  2. To add a bit to my Twitter comment. People have a right to be curious. They don't have a right to have their curiosity satisfied. People in any minority group are not obligated to be poster children. A long time ago, in a galaxy far, far away (sorry, can never resist that!) I felt obligated to put people's minds at ease. No more. If I'm fine walking around looking like this, they need to be fine with it too. And seriously, if something as minor as seeing ichthyosis throws you or a loop, you need to get out more. When I finally saw ichthyosis on another person (I was 21) I was shocked at how 'normal' it looked. THIS is what people were banging on about? Up until that point I had only myself to go on and I was convinced that I must look like the Creature from the Black Lagoon. Anyway if I did look like that, it would be fine too.

    1. I love your comment Carolyn! People really are shocked by difference, and perhaps it's because we've become conditioned to the airbrushed perfection the media perpetuates as well as lack of healthy discussion about diversity in the family unit.
      Thank you for your contribution - I appreciate it a lot :)

  3. I fully appreciate whereyou are coming from Carly but are you aware that even so-called normal people are the object of prejudice? I was the only child with glasses at my school. That made me a four eyes. Then it was the braces. Have you ever offered commiseration to a teenager suffering the pain of them or do you simply ignore them. One of my daughter's friends who is an absolutely beautiful (not skinny but bonnie) was recently asked when her next baby was due. She has suffered all her life from a large tummy and just been diagnosed with goiter. Undoubtedly she will have to explain to her friends and others what that means because not all of us know. I am aware of unusual clothing or buildings or ways a tree grows. Should I not also be aware of the diversity amongst my fellow humans and be interested in that? I don't know well how to communicate with people. That in itself is an anomaly for which I have suffered most of my life and see my children suffering from even now. In fact their teachers used to pick on them for not asking enough questions. Please don't immediately label others as rude or uncaring for not knowing the correct way to approach you. Most of us don't know how to approach others correctly and fumble our way through life trying to reach the inner person. I hope you have a lovely day. Cherrie

    1. I take issue with what you've written here, Cherrie ~ as I don't think others should have to shoulder your inability to communicate in a respectful manner. This is clearly something problematic that you're aware of (as you say you've suffered from it for most of your life), so how have you gotten to adulthood and not addressed it?!

      You seem to be completely missing and overlooking the poignant concerns that Carly has raised in this fantastic blog. You state that you're aware of "unusual clothing or buildings or ways a tree grows" so should you not be aware of the diversity with "fellow humans" and be interested in that? Ummm... Not quite sure how inanimate objects are comparable to humans and their emotions... But I would say an unequivocal "YES!" to being aware of diversity ~ and within that, you should also be aware of respect. It's not that hard.

      And if a person can just blatantly make a comment about one's personal appearance - without any social context or initial politeness/niceties - then yes, they should be labelled as rude and uncaring. Depending on the extent of their rudeness, some occasions would warrant them being called obnoxious morons.

      You're bound to reach the "inner person" with a certain level of depth if you approach them with respect, maturity, decency and social etiquette. Just as you would expect in return. Once again, it's not that hard.

      I hope you have a lovely day, too.

      P.S. And Carly, I absolutely love your work!

    2. Hi NB Thanks for your thoughts on my comment. Quite possibly, like me, you have found in life that most adults do not care or are unable to take in the full picture of where another person is coming from and judge their speech and actions by their own experiences and ways of thinking formed by their own life experiences. They tend to always negatively judge others rather than have a good think about what the other people might really mean. Today that is just what you did. Sometimes I also feel that is what Carly is doing. She wrote a great post on what not to do but did not include anything positive about what we should do. If people wish us not to act the way we do then maybe we need to be taught positive behaviour. I also get offended sometimes when people with obvious differences presume that they are the only ones to suffer from prejudice. While you may have full understanding for where Carly is coming from do you have any understanding for me. I guess not by your response to my mention of shyness. You have obviously never lived in the shoes of such people and presume that it is an easy problem to solve. All I really wished to point out by my comment was that prejudice goes both ways and further. People everywhere are hurting each other by their lack of maturity but it is only a small minority who are politically correct in saying anything about it. Sorry if I have upset you Carly or sounded critical of you. I highly respect you, always enjoy your perspective but do believe that you may need to look at why others act as they do in order to make a real difference in their behaviour.
      PS I would also have found that man's abrupt manner to be upsetting but may just have thought that that is the way he treats all people and not seen it as evidence of prejudice. Cherrie

    3. Thanks Cherrie for your comments.
      As a regular reader of my blog you will see the strong friendships I've formed (particularly with your friend Ms CulyPops) with bloggers, offline friends and the positive networks I have created in my life. While this post may have seemed judgemental of this man's actions, it was a reflection of his behaviours at the time. I commented to Rod below that I didn't mention positive encounters because of my skin - see that comment. A positive encounter because of my skin would also have to be my friendship with Paul De Gelder - I met him because of my writing and speaking work.
      Thanks again

    4. And furthermore Cherrie, while I didn't provide many concert examples of how to "react", I always emphasised politeness. Which is what you'd expect from someone you just met, isn't it?

  4. I have a slight issue with your belief that you think people 'don't have the right to have their curiosity satisfied'. We are all curious, as you mentioned you are too. Curiosity is the learning aspect of our lives. Its a form of teaching/understanding. If we weren't curious we would all be ignorant and intolerant to those around you. By this blog it appears you do want people to understand. Certainly there is a wrong and right way to approach curiosity and I do hear you, but I do think we need to satisfy those that are curious, otherwise they will never learn.

    1. What I've gotten from reading Carly's wonderful blog is not that people aren't able to have their curiosity satisfied, but they need to be aware of *what* they say and *how* they say it.

      "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 maybe thank us for taking the time to tell you about ourselves, don't just say "I thought you were [sunburnt is the word that I usually get]" and then walk off. "

      Curiosity can be an invasive, uninvited and demeaning aspect of socialising for a person. And I completely agree with Carly that manners play a pivotal role. Far too many adults are not aware that what you say to a person and how you engage with them speaks volumes about the respect you extend to them.

      You can downplay the curiosity aspect, but it's actually NOT Carly's sole purpose to be a preacher or teacher when it comes to educating others about diversity, acceptance, manners and respect. I can't even imagine how fatiguing and exhausting it must be to have to contend with stares, whispers, comments and reactions when you're out and about just living your life (fabulously, I might add). It's a privilege that you can state you "have a slight issue" with Carly's statement re. curiosity ~ but don't disregard the bigger message of what she's saying.

    2. Hi Rod
      Thank you for your comment. I agree - curiosity is the key to education, and as I wrote, if a person shows curiosity politely I am happy to answer their questions about my appearance. But I also reserve the right to hold back from telling a stranger everything about me or even not telling them at all if they ask me rudely (like some of the examples I mentioned). It is a tricky balance.
      I haven't seen you comment here before so perhaps you're a newcomer to my blog - if you read some of my previous entries you will notice that the questions and comments and assumptions about my appearance and condition happen regularly and do get tedious. So it's understandable when I experience a certain level of fatigue from explaining how I look to strangers, or receiving stares and comments from onlookers.
      I didn't mention in this post but I have done previously - see the 'conversations in a cab' post - many interactions about my appearance are positive because the person asking the question is not rude. They haven't launched in without a hello to ask why I'm red.
      Thanks again for your comment - I appreciate the food for thought.

  5. Thank you for another wonderful glimpse into your unique perspective, Carly.

    The main thing I try to teach my children is to look for the similarities, not the differences. Differences between people are the mountains to explore once you've tackled all the common ground below.

    Um, I'm sure I phrase it much, much clearer when I'm talking to my kids... sure of it.


    1. Thank you so much Maxabella. What a lovely analogy - its important to explore and be curious about diversity (in a polite way) but its more important to build rapport first. I love what you're teaching your children.
      Thanks for taking the time to read and comment.

  6. It amazes me that people can be so rude! Would they ask the same sort of question to someone whose hair is messy? It's almost as though they think they're doing you a favour by asking such personal questions.

    If only these people realised that a little politeness goes a very long way.

  7. Hey Katie thanks for stoping by to read and to comment. You're right - would they comment on any other aspect of appearance in an impolite way? Probably not? I think people just shoot their mouth off without thinking it through.

    1. I've only just found your blog and I know it's a long time since you posted this but I felt a need to comment. You asked if people would comment on any other aspect of appearance impolitely....yes, from personal experience, people do not hesitate to comment rudely on morbid obesity, making assumptions about eating habits and lifestyle that may not be true and often being quite offensive.

      What a much better world it would be if everyone lived by the Golden Rule and treated others the way they would like to be treated.

  8. Amazing, insightful post. Thanks for sharing your experiences Carly x Just wish people had more bloody manners!

  9. I'm interested in any advice you may have about how to manage kids who have no problem asking tricky questions, loudly and in public. For example, the other day at the beach my four year old son shouted (they always shout!), 'Mummy, why does that man have robot legs?' about a bloke who had two prosthetic legs. Now, I totally want to instil good manners in my child (and he is normally very well mannered) but four year olds will be crass and they don't have an inner filter. At that moment, I simply said to him, 'Well, why don't you ask the man politely yourself?' and smiled apologetically at the bloke in question. My son, of course, was suddenly overcome with shyness at being put on the spot, then a big wave came and we were separated from the bloke, so I wasn't really able to resolve the situation, respectfully or otherwise. I'm interested in how people with disabilities manage young kids' forthright overtures and how they'd prefer parents to manage them. I mean - with young kids, we don't always get the opportunity to manage a situation as per your (excellent!) advice above! - Miranda

    1. Hey Miranda, thank you for stopping by and for your question. I'd much rather kids ask me about my appearance than their parents make something up or tell them off. Kids are much more polite (and cuter) than adults, and I don't mind answering them.
      Usually I say to them "I was born with a red face, like you were born with blue eyes". They are usually satisfied and their parents are too.
      If a kid is particularly rude, like says "yuck mum, look at her face" and points wildly, I just smile and keep walking.
      Stella Young (@stellajyoung on twitter) is great at responding to kids' curiosity - she used to work at a museum, and often tweets about the kids she's encountered.'
      I've never been comfortable with handling kids until recently - it brought back memories of being a kid myself. I wrote a little about encounters with kids last year actually - search the 2012 archives :)
      I hope this helps you! Thanks again and good luck.
      Just tell your son that everyone is different and difference is what makes people special.

    2. Oh Miranda, not sure if I can paste the blog links here from my iPad but search the February 2012'archives for 'engaging with children is nice' and 'engaging with children is funny'

  10. I'm interested in any advice you may have about how to manage kids who have no problem asking tricky questions, loudly and in public. For example, the other day at the beach my four year old son shouted (they always shout!), 'Mummy, why does that man have robot legs?' about a bloke who had two prosthetic legs. Now, I totally want to instil good manners in my child (and he is normally very well mannered) but four year olds will be crass and they don't have an inner filter. At that moment, I simply said to him, 'Well, why don't you ask the man politely yourself?' and smiled apologetically at the bloke in question. My son, of course, was suddenly overcome with shyness at being put on the spot, then a big wave came and we were separated from the bloke, so I wasn't really able to resolve the situation, respectfully or otherwise. I'm interested in how people with disabilities manage young kids' forthright overtures and how they'd prefer parents to manage them. I mean - with young kids, we don't always get the opportunity to manage a situation as per your (excellent!) advice above! - Miranda

  11. Dear Carly

    I have to say, you are significantly more tolerant than I would be if I were in your shoes. Your patience and grace in the face of such astounding rudeness is amazing.

    Seiourslly though, how do you restrain yourself from telling these people how incredibly rude they are?


    1. Oh Evelyn thank you so much. Believe me, I don't always show restraint, and sometimes I am as rude as the commenters!
      Most of the time I don't notice the stares, but the comments and questions are hard to avoid.

  12. Do you understand how much good you do Carly? I hope so... each and every one of us have 'things' wrong with us. Some visible. Some not. Some evoking comment, some not (immediately). I hope that when I get to finally meet you that we hug and converse as friends would, who have met each other for the first time. I know I WILL probably look closely, and hope you are not hurting. I hope that same thing with most people I meet though, so don't go thinkin' you are special, okay?


  13. Such a great post Carly!! I really want everyone I know (and don't know) to read this! Don't mind me if I keep sharing this post over and over! As for the whole sunburnt thing, uhg that gets annoying. Especially the following remarks like "oh thank god it's not a sunburn". Ive gotten those too and they make me furious!!!! Keep educating those out there. You're doing a fab job!!!

  14. Great read, thank you for sharing.
    I live with bipolar, PTSD, DID and an autoimmune condition that gives me chronic pain, excessive tremor and sometimes makes me look 'drunk'. I am in my 30s and also get the 'but you're so young!' Or 'you can't be insane, you look normal' or my favourite 'what do you mean you have a disability? You are so intelligent'
    It is a shame people feel entitled to ask intrusive questions.

  15. HI Carly, thank you for this post. This is my first time commenting on your post but wanted to thank you for this.

    I wanted to comment from my perspective as a Mum of a gorgeous daughter who is quirky and definitely different. We still used her wheelchair, her speech not so clear and her behaviour could be very interesting. When I would go out and about I could see people staring and wondering about this kid. She would demand their attention so I often had the opportunity to talk to them and answer questions. Other children would come out with comments that would embarrass their parents no end but in actual fact I love that because it's honest and straightforward. For me it was the people that turned away or refused to answer her that I found the hardest.

    I certainly understand your fatigue at getting attention that you haven't asked for or initiated. It is tiring and certainly rude not to start with the general niceties of good manners. What a fine line it is though because a lot of peoples rudeness comes from being ignorant of something a bit different and uncomfortable with how to handle themselves. This doesn't absolve them of their behaviour at all. The more people know the more comfortable they become is what I hope for but am realistic enough to know that some will never.

    We lost her four months ago at just 5 1/2 years and I am shattered. We celebrated every single oddness that she had and she was never "less than". She has taught me to celebrate the differences in life and to love the quirky. Thank you for you post and for sharing with people what your life is like - the ups and the downs - and I pray that peoples eyes are opened to the bigger picture of what is important - we are.


    1. Hi Christine
      I am very sorry for the loss of your beautiful daughter - from what you've written, she seemed a joy, and taught people so much about diversity.You are right - it is a fine line between curiosity and rudeness. I would rather people ask questions than make assumptions and walk away uneducated, but I'd prefer they'd do it politely, engaging in an exchange of hellos at least.
      Thank you for taking the time to read and comment here - I am so touched you shared your extremely personal story.
      Kindest regards.

  16. You are making mountains out of molehills. Sure, some people are rude. Guess what? They are rude to lots of people, not just you. Some other people are being really straight with you and treating you informally, just like a friend. They are not intending to be rude. they just want to know so they can adjust their world view. Let them. This is a good thing. They also talk like this to people with toddlers, and old people with too many parcels, and others. They are not being rude to you. You are being foolish.

    1. Because calling someone foolish isn't rude in the least...


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