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?
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.
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.