Yesterday I went to my high school where I delivered a speech and was inducted onto the wall of honour. I never liked school. I liked the learning part, but I hated the exclusion. And so I talked to the students (and their parents and the teachers) about this, and what they can do to include their peers. I really wished those who gave me a hard time could have been there to hear it too. Maybe they’ll read this. My parents and a friend came to watch, and I had some friends in the audience – teachers, parents and people I went to school with.
When I arrived, I felt a little nervous, because those memories of school have stuck. But it was so good to see the teachers 15 years on. I commented to one teacher that I had never seen her wearing anything other than her sports gear – today she looked fabulous in a sleek dress! She told me she’s grown up too! Another teacher told me that I look exactly the same as when I left high school. I know. And then I got to watch the young people receive their awards – all so smart and accomplished (and there were subjects spoken of that I want to do! Sweet endings (cooking) and paddock to plate (food growing) sound right up my alley.
I gave the speech – started off nervously, but then it was exhilarating. And I am so glad I did it. Richard, the school principal, left me this message last night:
“Your speech was truly inspiring, I know that certain members of staff had tears in their eyes and I know that many students will have been affected in the most positive way by your wise words and quotes.
“Hi Carly, I was lucky enough to hear you speak today. It was a truly wonderful speech and I wish someone had given me the same one back when I was at school. I’m sure it made an impact on the students that were listening today.”
A special thanks to Mr Woodman, Ms Valeri and Ms Coombes for organising my induction.
(with Mr Schell and Mr Woodman)
Here’s my speech.
Thank you for having me speak today, and also thank you for inducting me in the Murray High School wall of honour – it’s really lovely. I must be the least sporty person in it.
Firstly, a big congratulations to all the award winners today. You’re all so hard working and accomplished for your short lives.
Like you young people probably do, I find meaning in song lyrics. I’m going to use some of them in my speech – I hope you will relate, despite the vintage of some of the songs.
I’ll start with Lady Gaga. She sang: “I’m on the right track, baby, I was born this way, Don’t hide yourself in regret, Just love yourself and you’re set.” These lyrics set the tone for this talk.
Yes, I was born this way. I was born with a rare, severe genetic skin condition called Ichthyosis. 20 people per million have the condition and there’s over 20 variations – I’ve got one of the severe types. It means scaly red skin. The doctors didn’t think I would live this long.
And like Gaga, I also love myself – not in the up myself way – but in an “I’m proud of who I am” way, despite what others expect.
My condition means that my skin is inflamed, scaly, itchy and sore. It affects my eyes, ears, metabolism and temperature regulation. Every day – twice a day – I cover my whole body with a cream that’s similar to Vaseline. Sometimes I get so sore I need to go into the hospital for intravenous antibiotics and to be bandaged up like an Egyptian mummy. But like anything, there are upsides, one of which is that my skin renews itself so quickly I look like I’ve just finished high school. Most of the time it’s pretty good – but I always look red (that varies from chipolata sausage red to fire engine red) and there’s always an element of pain.
The next lyric is from a band I listened a lot to when I was at school. Savage Garden. Many of you weren’t born when they were at their peak, but I loved them and still listen to them now. I knew their lyrics off by heart during my HSC, but wasn’t really good at maths.
The lyric goes: “I wonder if you know the pain to want the one thing that you haven’t got?” I experienced the pain of wanting friendship for a long time.
When I was at school, I had very few friends. There were a few people I called friends, but only one that I hung out with after school for about three years. I hardly went to any parties.
People are afraid of the different especially when they’re egged on by their mates to make fun of and exclude the different. I just wanted to look normal, to fit in.
Most of my lunchtimes were spent in the library, alone. When the library wasn’t open, I’d hang around the school office. I was called names but the isolation was the worst. I can’t imagine getting up on stage making this speech when I went to school – I’d be afraid no one would clap or they’d snigger and whisper amongst themselves. So thank you for giving me the time today.
Even now people stare and comment and can’t get past the way I look. I can see their minds tick over when they see me, they stop what they’re saying when they see me, wondering how I got so sunburnt. Sometimes they laugh, other times they comment on my appearance – to their friends or to me directly. I’ve been prayed for, offered all sorts of cures (there is no cure) and told how ugly I look. Teenagers have taken photos of me on their phones, probably sharing them with their friends on social media. It is tiring, but then it’s also a way to meet really interesting and lovely people. For every awful person I meet, I encounter at least 10 wonderful ones. And I get recognised a lot, even by celebrities.
Fortunately I found my tribe. I found it outside of school – when I started working at Kmart in year 12, and then when I went to university and when I moved to Melbourne, in the blogging and disability community. I finally have real friends! So many that I’m finding it hard to narrow down my wedding invites! And many of those friends are different in some way – like me. It’s wonderful.
There was no one like me at me at school. No one else looked different, no one that I knew of had a disability. I didn’t even identify with having a disability – I thought it was a negative thing.
I know there are young people in this assembly today feeling like I did. Alone, different, like things will never get better. You might not have a skin condition but you might have a learning disability or a physical disability. You might be a different size or shape to what you think is normal. You might identify as a lesbian, gay, bi, trans or intersex. You might follow a different faith to your friends. Or you might come from a diverse cultural background.
I want you to know that there’s no such thing as normal. Normal is just a setting on the washing machine. I want you to know that you that are not alone, and that if things are hard in school, there is a big world outside of school with many opportunities for you to find your tribe too. There are people out there who will get you, will share the same interests as you, and will love spending time with you. It gets better.
U2, a band probably before your time, but they tried to get into your iPhones recently, has a song called Stuck in a Moment. The song goes: “You’ve got yourself stuck in a moment. And you can’t get out of it.”
I reiterate, you aren’t alone, and there is help. If you find yourself stuck in a moment, reach out to a trusted family member or older friend, talk to a teacher you get along well with, or call the kids helpline.
And teachers, please act when a student comes to you feeling like they’re stuck in a moment. You might be one of the only people they can turn to at school.
So, with the all medical and social challenges I’ve had, and looking really different to most people, how have I come to love myself? It took a while, but I came to realise I will never look like most people do. And that’s ok.
I’ll give you another quote – again from Savage Garden. They sang: “I believe that beauty magazines create low self esteem”.
And, I believe this too. I gave up on reading trashy magazines long ago. I stopped comparing myself to the models in magazines, to the women I saw in the street, and started to believe in myself. I got to love fashion and take pride in how I looked, And I began create my own media – with a blog that now gets 70,000 views a month, I can tell my story in my own way – without the exploitation and sensationalism that you often see in stories about disabilities and rare illnesses in the media. If you’re feeling bad about the way you look, stop reading those magazines which place unrealistic body image pressures on us. You are not them, you are you. And kindness is more important than how you look.
So, Katy Perry sung in Roar: “I went from zero, to my own hero”.
I challenge you to be your own heroes too. In recent years, I’ve made my own path to be my own hero. I’ve made a difference that I am proud of.
Last year I was abused by a taxi driver, he told me my face would ruin his cab, and that I smell. I got out of the car, and into another cab, and then I tweeted the event – to my 5000 followers. I blogged about what happened, urging for better training for taxi drivers – to show them that disabilities are diverse. I lodged three official complaints – to the taxi company, the taxi commission and the Australian Human Rights Commission. I called on blog readers to participate in a training program for the taxi company, and they came, they told their stories of discrimination. And now a video has been made for Victorian taxi drivers, featuring my friends and my stories. And I hope less people with disabilities experience discrimination from taxi drivers because of what I experienced and my decision to speak up.
A year ago this week, my photo was misused on Reddit. I woke up to find 3000 hits to my blog, and found that they all came from Reddit. My photo was front page – with 300 comments ridiculing, dissecting and misdiagnosing my appearance. These keyboard warriors were sitting at their computers, making fun of a stranger on the internet. It was hateful. You know what I did? I didn’t cry. I posted a calm, informative response to the haters. I confirmed my identity, told them about Ichthyosis and what it means for me, told them about the great life I lead and directed them to my blog.
I’m pretty sure Taylor Swift wrote Shake It Off about me!
I blogged about it of course. And the next morning, I woke up to requests from News Limited, Mamamia and even CNN in America to share my story with them. My blog received 70,000 hits in two days. I went viral, international. The highlight – Charlie Pickering telling Australia about my writing skills that night on The Project. I took control of that bad situation, and turned the negative conversation around. Those 300 comments turned into over 500, most in support of me. I feared that my photo would one day be misused. My fear came true and I smashed it. I don’t advise that you take on keyboard warriors, especially without emotional support from people you trust and who know social media, but I do hope you can be your own hero and make a difference in your own worlds.
Be your own hero by being a leader. That’s my challenge to you when you leave this assembly, and for the rest of your life.
If you see people being mean to others, in person or online, call them out on their bad behaviour.
Don’t make fun of the way someone looks by posting a photo of them or commenting on a photo of them on the Internet. They may be watching. They will be hurt.
Don’t ridicule or exclude people who look different.
Include the people who are excluded. Welcome them into your lives, get to know them. Sometimes the best friends you make are those who are different to you.
Never be embarrassed to be seen with someone who looks different.
And if you are the person doing the bullying, stop.
When I left school 15 years ago, I never imagined I’d be living this great life. I never thought I’d fit in. I never thought I’d be a published writer in the publications that I read. I never thought I’d get to speak in Australia and overseas. And I never thought I’d be engaged to my wonderful Adam. Most of all, I never thought I’d be using my appearance – the thing I most wanted to change to fit in when I was in highschool – to my advantage.
And you can too. This is my final quote from Darren Hayes – that singer from Savage Garden. I have been a fan of his for so long, and now he reads my blog! I talked to him on his podcast earlier this year where he said to me and his listeners – “what sets you apart makes you a target, and what sets you apart unique.” Such true words.
Be proud of your uniqueness. Love yourself. Be proud of who you are. Use social media for good. Look out for and include others. Be your own hero. And congratulations on all of your hard work this year and beyond. Thank you.
Contact me if you’d like me to speak at your workplace, school or event.