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.
Carly

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 :)