05 August 2010

How do I deal?

This has been on my mind for a few days, and I have wanted to write about it. I haven't had much time to do so, and I was also concerned about how I'd write it. So here goes.

Last weekend I wrote about doing actual and metaphorical forward rolls. The gist of the blog entry was that I did an actual forward roll to prove I could do one, but through life I do metaphorical forward rolls in the form of striving to achieve to prove that I am more than a red face. You can find that blog entry here.

Then I posted that same blog entry over at The Ability in Disability blog. I contribute to that blog sometimes. My posts aren't ever written especially for that blog, rather they are ones I did here and I've deemed them appropriate for that blog. The other contributors usually write posts especially for The Ability in Disability.

Anyhow, I received a few wonderfully supportive comments on that blog entry here, and one comment on the entry over there. I get that blogging opens us up to all sorts of comments. Some nice, some critical, some bewildering and some downright nasty. Fortunately most of the comments I've received have been really nice and supportive. I've had a couple of critical ones - six in total, and three of those have been on my Rob Thomas concert review - passionate fans! And touch wood, I've not had a nasty comment yet - even though I probably expose myself to potentially more strangers than I may see on the street each day. (I do fear that my picture is going to appear on one of those freakshow-type pages one day, though. I know you'll be there to support me should that day come.) Never have I received a bewildering comment until I reposted my forward roll entry on The Ability in Disability.

Here is the comment.

I can not do a forward roll, and jusdging by the inevitable pain, I don't think I want to.

I have a disability, that is not always clearly obvious when people look at me, but it affects my ability to function, and it certainly impacts how people perceive me and relate to me.

I would be one of the people who reacts to you in the way that upsets you so much. So if we ever do encounter each other. I apologise in advance. As a culture, as a person, I just do not know the right way to approach you, and how not to offend you, and the effort to not offend you, would inevitably cause offense.

I have a stunningly beautiful friend who I shall refer to as Bella. She has a sever cleft palate and her face is more of a Picaso than a DaVinci, and because I didn't know how to approach her, because many people with a "percieved disability" also have a preconcieved notion about how people will treat them and don't give you much of a chance. As fate would have it, I did get to have a lengthy conversation with her one night, and we are both the richer for it, and our continued friendship.

Without causing offence, I honestly, would like to know... HOW would I approach you? Unfortunatly, physical appearance is the first thing you notice about someone, and something you can't help but notice, I guess that's why the cosmetic and fashion industries are such multimillion dollar industries. However, I would not like to think that your offence at my initial reaction to your appearance and my reaction itself would mean that I would not encounter you beyond our initial reactions... I don't know that I have expressed myself clearly, but I hope you can understand my question...

I am sure the comment was well intended. And I thank her for taking the time to read and comment. It's another confirmation that I'm helping to educate about diversity, disability and chronic illness. While the comment wasn't rude, it really struck me as blatantly ignorant. While there wasn't a preconceived idea about me, there was a preconceived idea about the commenter's own reaction to me, should she meet me. She didn't want to cause offence. And she didn't. It just left me saying 'what the???'

My responses were:

Hi I think you could start by saying hello, being friendly and treating me in a way you would treat any other person you would encounter. Not patronising. Not in a judgmental way. And without fear.
Of course physical appearance is the first thing we notice. But it is the inside person that counts.
PS - I encourage you to have a read of my blog - http://carlyfindlay.blogspot.com if you haven't already. You will see stories of the ignorance and rudeness of the way people have reacted to my appearance, and hopefully come to understand why I wrote this particular blog entry.

In my opinion, it would be appropriate to question how you may approach someone who's going through troubled times - like worrying about what to say to someone whose relative died, for example. But I don't think there should ever be a question about the way you should treat someone because of their appearance. Just treat everyone how you'd want to be treated, and hopefully that is nicely, respectfully and on an equal plane.

Her comment got me thinking about a few things.

She was brave to ask these questions. Yes my reaction was 'what the???'. But by asking these questions, she's been educated, and better prepared for encountering people with a disability.

I have put myself out there on this blog. Strangers have gotten to know me. And they haven't judged me from what I've told the world via my blog about my chronic illness. It's not like the reaction I receive from some strangers in real life. That feels nice. Thank you.

When I walk down the street, I can see the way people look at me. They often stop, mid sentence or action to stare. Last week I saw a woman come towards me in busy Swanston Street, she saw me, and it was as though her face moved in slow motion. She screwed up her face and looked back at me, shocked. Before she noticed me, she was deep in conversation. There are other times, when I meet someone, I see them looking a bit surprised, and then it's like they remember they have to be professional, and suddenly snap out of their daze! Being stared at has in turn made me more observant of others.

How people react to diversity, and imperfection, disability, unpleasantness or whatever else is foreign to them may come down to culture. The comment I received showed this. In my experience, I get treated worse by certain cultures. Stared at more, I guess. Just because there is diversity in the world, doesn't mean the diverse appreciate and tolerate and understand diversity.

The thing I have been pondering the most is that should it really be such a big deal to encounter someone with a disability? Should you treat them any differently to how you'd treat your friend without one, or how you'd want to be treated? I wondered why the commenter asked me how I think she should treat me should she encounter me. And that she stated she'd probably treat me like the way I have been the examples I gave. Wasn't it obvious in that blog entry? That it'd be nice just to have my appearance looked past and be given a friendly, sincere greeting?

And just because I'm so confrontingly different, it does not mean I'm not deserving of being treated like every other 'normal' looking person. See the person, not the disability. Even if appearance is what we see first.

Anyhow. This blog entry I'm writing now is certainly not meant to humiliate or offend the commenter. I just found her comment very thought provoking.

There have been many occasions when I have encountered people with disabilities and been mindful of causing offence. Just because I have a chronic illness, doesn't mean I'm without ignorance to the disabled and chronically ill. Sometimes I've been too polite, or just avoided talking about the disability until the other person does (which I think is the polite thing to do). I recently assisted in giving some disability awareness training at work. It was interesting to think that some of the suggestions of how to treat a person with a disability aren't inherent in peoples' way of life.

One thing I've encouraged in my public speaking is not to be afraid of making jokes around people with disabilities. I'm not talking about really brutally inappropriate ones. Or making jokes if you don't know the person at all - like this one that was made to me, after I did a speech on International Day of People with Disability: 'I play a sport where our team colour is red. You can be our mascot'. I kid you not. A joke like that is not even funny, and I didn't know where to look. But I think, if the person with the disability or chronic illness is prepared to have a laugh at themselves, and you know them relatively well, have a laugh with them. I think it helps with the comfort factor.

The only appropriate punny title that I can think of for this blog entry is How Do I Deal? - a song by Jennifer Love Hewitt - the former Party of Five actor who now vajazzles. (Too much information?!?!) Tune into Radio Carly for how to deal with encountering someone with a disability or chronic illness. But not for vajazzling. I've never tried it. Perhaps if this chronic illness didn't restrict me from gluing diamantes to my skin, I would vajazzle.

PS: don't forget to tell me how you found my blog! There is a cute prize :)


  1. As always Carly, I thank you for contributing to The Ability in Disability. Although these types of conversations can sometimes be difficult and confronting these are the exact types I had hoped to generate in establishing the blog. Even though you are right in labelling the commenter as 'ignorant' I am proud of the fact that she felt comfortable enough to ask these difficult questions on the blog itself. I am sure like me you would rather people ask you these sorts of questions so you can answer them correctly, rather than them making wild and drastic assumptions.

    Also your response to the commenter shows a lot of dignity and class. I appreciate that it might have been difficult for you to respond in a calm and controlled fashion. Not only did your response do this, but hopefully it changed people's opinions and broke down a few barriers.

    Thanks again.

  2. Wow. I can't believe it wouldn't even occur to someone to just talk to you. You are a person too, right?

  3. I think the overly apprehensive fear of offending someone who has a different culture to yourself provides a really big block to engaging and talking with new people. In my experience most people understand that you won't know everything about a culture that is different to your own and that it's ok to make mistakes as long as you're respectful and not overtly rude.

  4. My opinion is more harsh, possibly because I don't feel beholden to tactfulness or diplomacy, or maybe because I'm just nowhere near as nice.

    The whole "I'm really a good person, I've had conversations with my good friend who has such and such a disability and I'm better for it but ..gasp, BUT I'd still probably act funny around you help me with this...because I'm enlightened and want to to the right thing" it's all a little too disingenuous.

    No it shouldn't be a big deal to encounter someone with a disability, the unfortunate reality is when someone does they are often only concerned with the way they are perceived.

  5. You write so well Carly, I'm always in awe! You've got my mind ticking for sure!

    And indeed - shouldn't we treat others as we would want to be treated? & if you don't have anything nice to say, don't say anything at all?

    Easy things to remember that all parents drill into our consciousness since a young age.

    Simply, respect.


  6. Carly you answered that persons question beautifully and with much dignity. I agree that the person is brave in asking such a question but there was an air of ignorance in it. I have one question though. What is HER disability? She mentioned it affected the way people relate to her and percieve her.. I wonder if it was a social disorder and that's why she asked the question in the first place? - Lucy

  7. Wonderful post, Carly. I am intrigued that you wrote "I get treated worse by certain cultures. Stared at more, I guess" because this is exactly the same as me. I've never known someone that doesn't look "normal" in my day to day life, so it was interesting that it's not just me that this happens to. I avoid explaining that aspect of the staring to people out of a bit of fear I am judging the particular cultures/races that stare at me much worse than others. But it's just a fact, really.

    I'm confused about the commenter's bit about having a friend with a severe cleft palate. A cleft palate, no matter how severe, doesn't actually change your outward appearance unless you have associated craniofacial problems, so I don't understand why the person would've had an issue "approaching" Bella. Totally not the point of your post, but oh well. Haha :)

    Sometimes I feel like just saying, "My god, I'm just a normal person! The way I look is irrelvant."

  8. Your response was thoughtful, well-written, and just right on. I don't know, I simply cannot fathom why someone would consider any kind of physical issue an impediment to treating someone exactly the way they'd wish to be treated themselves. I mean, how much interaction do we typically have with strangers anyway? Maybe you hold the door open for someone and smile, say thank you if they hold the door for you, at most, a quick chat about the weather in line at the grocery store? Does a person's apparent physical disability or issue give someone else carte blanche to make it a topic of conversation? Come on. As you say, I am sure she meant well, but I guess I'm just as mystified as you are.

  9. okay so the post was great, but I'm going "what the ????" about the vajazzling...yes, way way too much information. I think if I saw you in the street I would run right up to you and say OH MY GOSH! I'm finally meeting someone else with ichthyosis! While I don't have ich, my daughter does, and we still haven't met someone with it, even a different type of ich. I think having an awareness that there are so many different types of disabilities helps when we meet the people who look different than the "norm".

  10. I have a generalised anxiety disorder and bipolar, and Alopaecia. Not a social disorder in the manner that was implied.

    Carly, I am sorry that I caused you offence and such bewilderment. It was not my intention.

    Bella has severe facial deformity with her cleft palate.

    I do not have an issue with people with disabilities, but I do have an instinctive reaction to people who are different, and find myself "looking" or "staring" for the millisecond unconsciously. Not just at "disabilities", but odd clothes, hairstyles, makeup etc. However, people deliberately chose those things to get attention, knowing the automatic human response to anything out of the ordinary.

    I know that many people with disabilities have been treated disrespectfully so often that they are inclined to be justifiably defensive, and that my initial, automatic reaction, may preclude me from further interaction and cause offence that was not intented. That is what I was referring to.

    My question came from a genuine interest in learning and in dealing better with something that is not generally talked about except to criticise when it is approached in the wrong way.

    At least I am honest about my ignorance I guess.


  11. As usual, your post hits very close to home. I often wondered how/why people would even have to stop and think about how to behave/react to the diverse. Maybe it's because I grew up thinking the diverse didn't even exist, because I was able to always look right past the facade, and because I've always been one too. I don't know. But I guess reading all that just opened my eyes to something I was completely oblivious to. I now, for the first time, am sitting here wondering whether perhaps some of the people who have kept me at a distance in my life, simply did it because they didn't know just how to approach me..

  12. Thank you for post Carly, beautifully written as always :) I can't completely relate to how you feel but I do know what it's like to have people stare at you or feel nervous or awkward around you or treat you differently because of how you look, so I empathise. I look forward to the day when things will be different :)

  13. I guess even people with a disability want to be treated equally. I do not have a disability, but I am very tall and instead of people oogling at me and tip toeing around me, I wish they'd just treat me as a normal human being!!


  14. I'm not entirely sure if a guy that works at the library I go to has the same disability you have, but he has very dry, red skin as well. Of course it's the first thing you notice because that's how appearances work, but I don't see any reason to let it affect the way I act around him.

    My only moment that I get a flash of terror that I'm going to offend him is when he's handing me my receipt. I have this terrible fear of upsetting other people. My blog probably doesn't read like it, but I get really upset when I think I've hurt someone's feelings unintentionally. So when he hands me my receipt, I'm always just worried that he's going to think I don't want to touch his hand even though I know in my head that I wouldn't be bothered by it.

    Is this a weird thing for me to feel bad about? Do you think that he actually thinks that at all when he's handing me my receipt or am I just reading way too much into things. I tend to do that a lot.

    My other fear for him is the kids who come in the library make a big deal about it. I've never seen it happen, but I know that kids can be pretty naive and say things that could really hurt people's feelings.

    Anyways, this is book-length so I'm done. And I like your blog, by the way. I got here from 20sb. : )

  15. Hi Carly! My computer is about to run out of "juice" so I'll make this quick. I came across your post after looking into ichthyosis--I'll be teaching a student with this condition and wanted to learn more about it. I'm impressed by you, Carly! Thank you for sharing. I also looked at your profile picture...what a striking smile! You're adorable...inside and out! :)


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