12 July 2013

Front page news. On not being meek and mild.

It's weird when you're featured on the front page of Australia's national, most read news website two days in a row. Who even decides what's news anyway?

(Don't read the comments on this one either)

It's strange when you're deemed the top news story, above a national talk show host, Kanye West and The Ashes. At one point, my story was placed above one about Australia's Prime Minister Kevin Rudd. A friend asked me what it feels like to see my byline on the front page of a(nother) national news site. I said it feels great. Something I've aspired to.

But when a story is told about me - fairly, sensitively and with all good intentions - it feels weird. I'm not the spokesperson and so I want to jump in and add things or direct readers to aspects of my broader life. Aspects where I'm having fun and laughing and my skin isn't the focus (even though it always is that shadow I'll carry around). I wanted them to see me laughing with a toy panda the size of me in the afternoon before I got into that taxi. But I guess, with standing up for your rights comes the perception that you're uptight, entitled, a trouble maker, angry, over reacting. I'm not.

The support has been overwhelmingly positive. I've had texts from friends and emails from people in my home town, and people I don't know, just to say "great job". The majority are glad I spoke out. So much love. I've done a news story for my hometown TV station - where I did work experience in 1997. And I did a radio interview with Chrissie Swan and Jane Hall (so much love!). I've received some valuable mentoring from my friend Meshel Laurie. The media coverage has certainly got people talking about visible difference and disability, which is what I've wanted.

But there's the dark side. This week's been tough. (And not just because I was front page news. I felt all of the emotions this week. I've had a cry. I was so relieved to see my 'real life' friends this week, those ones who know me three dimensionally, that can have a laugh with me, and just get it.)

I've been criticised because of the way I reacted to the taxi driver. Apparently swearing is not justification for someone else's rudeness. This condition is so rare that of course people are entitled to ask, they're entitled to be afraid! Of course.

The nasty comments from News Limited have come over to my blog. For the first time in almost four years I stopped anonymous comments here and have been moderating the comments I don't want to publish. (If you want to comment and don't have a gmail account, use this contact form.) But even with moderation, I still see them. I still saw that I was called an "Ugly Ugly Ugly bitch" and that I was "swearing like a whore". I still saw that people are demanding to know what's wrong with people like me because as Mick of a country full of handouts said, "We the Australian people have the right to know now we have to pay your way don't we? Pay your own way and we wont ask.." Well, Mick, I've never received a handout in my adult life, and when I did, I was fully entitled. Nobody has the right to know or to demand an explanation aboit a stranger's (or customer's) disability The othering shown in the comments section is disrespectful. I've also learnt that the comments on news articles are so much easier to read when mocked by friends!

While I generally respond to peoples' questions and comments with good manners and good humour, I will be rude back to those who are rude to me. I feel that some people (those who don't know me, don't see peoples' reaction to my appearance, haven't experienced peoples' horrified or rude reactions to their own appearance) think I should just lay down and take it. Meekly, mildly. Certainly not vocally.

I don't have to put up with, rise above, toughen up, quieten down, justify my reaction, be a perfect role model (I'll be a real role model, thank you very much), explain the way I look, be a lesson or remain polite every minute of every day. Because just like everyone else, everyone else without a visible difference or disability, I am human too. I'll get upset, I'll get tired, I'll get angry. Because for every question, comment or rude remark someone gives me, I've been received five before that. I'm not going to behave in a way that people condescendingly expect me to.

My blog had over 10,000 hits in a day (according to Blogger). Ten thousand. I can't even. (And never have I been more relieved to see a drop in page views - it meant I was old news.)

It's a little narcissistic but I love looking at my blog statistics. On Tuesday, my blog had more than twice as many hits as my previous biggest day - which was last Friday. Pleasingly, the readers from News Limited stuck around, reading my archives. They read my backstory. My What is Ichthyosis? page has been one of the most visited this week. That's a hell of a lot more people now informed, firsthand, about what it's like living with a visible difference. That is a great outcome.

There's definitely a difference in the level of empathy when someone else has told my story. As Tash reminded me this week, there's been a handful of nasty comments compared to the "bazillion" lovely ones. Like this from Jessie Taylor, a refugee activist and lawyer who I respect so much.

And when things get me down, when I doubt myself, I think of the friends I have around me, and of little Corbin. Corbin is a six year old boy who made me a video. His Mum has been reading my blog for a little while now. Corbin has a visible difference - lymphatic malformation of the face. He thanked me for making a difference. He's a reason I keep telling my story.

Watch Corbin's video here.

Baring my soul and using my face as activism sometimes makes me vulnerable. But boy, does it make people take notice of issues that need to be brought to light.

Thank you for all your support this week. Thank you.



  1. This post was awesome - literally, awe-inspiring! Sharing on Facebook and reTweeting!

  2. So glad to see you making such a difference for those living with visual differences. I love reading your blog! I appreciate your honesty and openness. I admire your ability to take a hurtful situation as use it as an opportunity to educate. I hope my son is able to be as bold as you in life! Thank you for sharing!

  3. Oh the joys of news.com.au commenters. The basest of low-brow, bigoted idiocy.

  4. I learned the hard way too. Never read the comments.

    When I saw myself labelled on national news as a "blind activist" I did a double take. I was what now? All I did was stand up for my rights and say no, it's not OK.

    What you do, with all the public speaking and awareness, is amazing. You shouldn't have to fight for basic rights like a taxi ride home with a respectful driver. And you definitely shouldn't have to deal with the tossers who comment with such ignorance and malice.

    And go Corbin :)

  5. I love your attitude and that you find inspiration to keep telling your story.....which then gives others inspiration.
    Those that are negative back at you are in a sad lonely darkness and I know they will not stop your light from shining.
    Your light is getting brighter all the time,spreading far so we can see life lessons,we can grow and we can all help bring positive change.x

  6. Maybe the taxi driver thought you were wearing face makeup that would get on his seats...or is that wishful thinking?...

  7. Great post, Carly. Anyone who says your reaction was over-the-top or that you're a trouble-maker obviously didn't bother to read your post about the incident, or any other part of this blog.

  8. You are such an amazing woman, Carly (and writer!). I wish I knew you in real life.

  9. I've had the displeasure of News commenters many times and I feel your pain. But as you point out, for every bigoted, ugly type, there are loads of supportive, reasonable types. I'm glad they found you. x

  10. You are inspirational, Carly! I saw you the other they and wanted to say hello, but you were just about to hop on the tram, so I didn't want to stop you, given the amount of stuff you had to deal with this week. You are amazing, inspirational and super super brave :) xx

  11. There's only one thing more brutal than the anonymous commenter, and that's the anonymous commenter on a website. Well done Carly. xx

  12. Carly, you are an amazing woman. And Corbin is an amazing young man. There's really nothing else to say, because you can't put into words the positive change you are making in the lives of everyone you reach x

  13. Amazing, beautiful, uplifting post. I can understand what you're going through-- everyone feels entitled to give an opinion on a free, public, anonymous forum. The problem with them is that, while they would certainly be affronted if a stranger stopped and confronted them with questions about THEIR personal lives, it's somehow perceived as "okay" to confront (yes, CONFRONT!) a person with a disability or perceived "difference," because THEY are entitled to know, and WE are not entitled to our privacy.

    I won't tarnish your awesome blog post by going into details as to what I would tell them. All I will do is virtually hug you, Carly, and tell you that the bigger the sense of entitlement, the smaller the person. LOVE YOU!!!

  14. Love reading your posts and wish you all the best! !!!! :) you're a strong woman! !!


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