I gave the following speech for the City of Port Phillip’s International Women’s Day event last night. It was a fabulous event – I spoke alongside writer and activist Celeste Liddle and radio star Jo Stanley – two women I admire greatly. Celeste talked about Aboriginal people use social media for connecting and change; and Jo said she is unapologetically loud in male dominated media.
Louise Crawford, the actor and councillor was there too – we’ve become friends on Twitter.
A women’s choir called The Decibelles also performed – they were fantastic. My fave was Who Run the World?! I bumped into a few of them after the show – they happen to be members of the Chat 10 Looks 3 Facebook group an recognised me as a fellow Chatter!
I want to tell you this about what happened after the event before you read my speech.
A woman at the event came up to me as I chatted to some newly made friends after the speeches were done.
“Nice talk”, she said, as she touched my arm – rubbing it up and down.
“Do you want me to have a scratch?”
Horrified. I am not a cat scratching post.
“No thanks” I said, turning quickly.
A man also mansplained me.
“You’re the first person I’ve met whose face is the subject of her writing.
At least on your book tour people [who attend] will know what to expect and won’t get surprised.”
I am so grateful for this writing fodder, but I don’t stop being shocked at the audacity of some people. And these speaking events are now is my workplace.
I told the organisers and the councillors who were equally horrified.
Celeste said her otherness wasn’t pointed out by guests, and I suspect Jo’s wasn’t either.
I had spoken about the exploitation and medicalisation of people with ichthyosis and how I tell my story on my own terms; and then I got those comments! Were they even listening? I can talk about disability rights and my achievements, and have intelligent discussions about the media and feminism, yet my body is still thought of as someone else’s property to medicalise. My body is mine, to be touched and discussed on my own terms.
Just some food for thought. And even though these things happened, the night was wonderful and I made some wonderful new friends. I am so fortunate to be able to speak at events like this, and to meet so many interesting people.
Anyway, here’s my speech. Thanks for having me, City of Port Phillip.
Press for Progress – 1 March 2018
I’d like to recognise the Aboriginal elders past present and future. I’d also like to acknowledge the disability activists who have and are still paving the way for equity today.
I saw a tweet the other day from Queer Xicano Chisme, saying
“Twitter, at its best, sometimes allows marginalized folks the connections to create (and be compensated for it) at scales unavailable to us otherwise.”
And this got me thinking about tonight’s talk, and press for change.
Firstly, I identify as a proud disabled woman. Disability and disabled are not dirty words. It’s ok to say the word and see my disability. It’s a part of my identity. Just don’t wave your hands around your face while talking to me – that’s the international language of “I don’t know what to say about your face, but I’ll comment in gestures anyway”.
The theme for International Women’s Day (IWD) is Press for Progress. I’m a writer and aim to change the way disability and facial difference is seen both in the media and in society.
But the way the media reports on and includes disabled people is poor.
We are either tragic victims, undeserving dole bludgers or heroes. We aren’t afforded the same privacy or dignity as some other people are.
The language in media reports about disability is disempowering – terms like suffers from, wheelchair bound, and inspiring are used. This morning I tweeted a radio station offering them advice on how to report on disability. I do this regularly. Every time I read an article about Ichthyosis – the skin condition I have – that’s not written by me, I see kids and adults dehumanised, likened to reptiles or mermaids.
We are overly medicalised – our physical conditions zoomed in on and ridiculed in shows like Body Bizarre and Embarrassing Bodies – the type of awareness raising that never benefits the subject. We are sold the glamour of being on a show like Embarrassing Bodies for $250 and the pleasure of making others more aware and enabling them to snigger while tweeting about the show.
The recent biggest box office movies like The Greatest Showman and 3 Billboards Outside Ebbing Missouri are applauded by audiences and the industry but contain such horrendous ableism but barely anyone speaks up. The Greatest Showman was about a freakshow and audiences said their hearts were warmed. With the absence of disabled cast and filmmakers, and disabled characters existing solely to inspire and satisfy the curiosity of a non disabled audience, 2017’s The Greatest Showman film is no better than the freak show of the 1800s. In 3 Billboards, Peter Dinklage’s character was the butt of the joke in each scene he was in. Peter Dinklage has dwarfism. And the audience in the cinema I was in laughed every time he was called a disability slur.
Can you believe that in some news stories about disability, disabled people aren’t even interviewed? We aren’t even centered. What happened to nothing about us without us? I am forever grateful for non disabled writers passing on opportunities to me, or for editors commissioning work from me. I’m even more grateful when outlets like the abc asks me to write and speak on issues that aren’t even disability related, showing that I’ve got a rich and diverse life.
While I acknowledge this is an issue for women in media as a whole, it can be a struggle to get paid as a disabled writer. It’s no wonder 45 percent of disabled people live on or below the poverty line. The news outlets I write for are excellent in paying me, and letting me write from bed, but I’ve had disability organisations pinch my work for their sites, and many outlets ask me to write for free. Just last week a progressive women’s site for diverse women offered me $10 for 800 words. It’s too much work to even reply with a refusal and linking them to an article about why I won’t work for free.
And disability is often forgotten in diversity discussions, in diversity organisations even. It’s always about diversity, but not our type of diversity. We’re too difficult
In a 2016 Screen Australia report on diversity in Australian TV drama, it was revealed that while an estimated 18% of Australians are disabled, only 4% of main characters in Australian TV dramas are disabled – and most are non disabled actors cripping up.
Fortunately social media means we can take control of our own stories.
Disabled people are making own media, we are our own voices, we are all over your social media. So get to know us.
So many of us are using social media to not only raise awareness, but to created and connect with communities, and find disability identity and pride. We’re using it for activism too.
A recent article in Time Magazine talked about how “How Donald Trump Inadvertently Sparked a New Disability Rights Movement“.
“Since disabled people often don’t have access to transportation and may not know others in their area who share their disability, many engage in activism through the Internet. Campaigns like #CripTheVote, started in 2016 by Beratan and activists Alice Wong and Andrew Pulrang, have encouraged disabled people to become politically active and sparked conversations about topics ranging from opioids and chronic pain to disability and identity under Trump.
“I didn’t know disability activism existed until I went on Twitter,” says Kayla Smith, a 20-year-old with autism in Winston-Salem, N.C. Smith joined Twitter just as the presidential primary season was heating up in 2015. “I remember asking why I’d heard about civil rights for African Americans and other groups but not for disabilities,” she recalls. Now Smith plans to start a disability club at her community college later this year. She frequently tweets about disability news, commenting on everything from disabled representation in pop culture to the latest Medicaid update.”
Writing online unfortunately comes with abuse. Women bear the brunt of it. I’ve received my fair share, and I suspect the women on the panel tonight have too. My friend Melissa Blake, who writes on disability rights issues, as well as on dating as a disabled woman and the pleasure she gets from watching hallmark movies, receives horrendous criticism to her CNN, Good Housekeeping and New York Times pieces. She’s an activist through her writing and on Twitter. Unfortunately trolls don’t critique her writing on these prominent websites, but her appearance. Earlier this week she received a tweet from a man, in response to her tweet about Donald Trump. “Holy shit, you are possibly the ugliest thing I’ve ever seen in my life”, he said. Nevertheless Melissa persisted. She’s unapologetic, tweeting
“Writers write about their life. They’re not going to apologize for it…”
On a personal note, I started writing my blog eight years ago, to change the way people with facial differences and disability were represented in the media. To tell my story on my own terms. We need more diverse writers and books. I’ve gone from blogging to writing for the mainstream media, and speaking, and now I’m writing a book.
I didn’t see myself in the media or in books when I was young. Characters with facial differences are often representations of evil. There are very few stories where the character that looks different is the hero of the story, and when they are, they’ve had to change their appearance.
There was no one in media or books who looked like me, or to tell me it’s ok to not want to change my appearance, and I didn’t know whether I’d find love – love with another or love for myself. It’s time to write that book. To be the person Little Carly needed.
I want to add my voice to the literary world – changing the way readers perceive disability. People with disability and facial difference are often portrayed as burdens, tragedies or super heroes, and I want to show that life with a disability is not a tragedy (or exceptional). I also want to show parents who have a child with disability and facial difference that there is no need to grieve a life lost – because their child is alive and can live a great life with love and support.
I hope my book will help readers find the courage to look the world in the eye when the world sometimes looks away, or looks too much. I hope readers finish the book with new perspective about people with facial differences and disability, and the realisation that disability pride is a wonderful thing.
Readers who have now become friends are grateful that because I’ve told my story of living with a rare skin condition, they’re more confident to tell someone about their skin – be it on public social media or their new partner. Some women who are much older than me have also told me that until they found my writing, they thought they were alone, and are relieved they’re not. New parents say seeing my work and life gives them hope for little ones born with Ichthyosis.
And this is why I write – even among all the mass of toxic abuse I have encountered. To create communities and form strong networks and friendships, to increase representation and to get paid.
This doodle was sent to Celeste, Jo and I on Twitter. What a beautiful summary of the event. It’s by April Seymore.
Has this piece helped you or made you think? Will you use it in the workplace or classroom? Please consider buying me a drink!