Erin Kyan, Monsters

Every two months or so I receive an email from a TV production company or tabloid magazine – the type that run stories on people with rare medical conditions, ridiculing them for the way they look.

The TV shows set the tone with their titles – Embarrassing Bodies, Body Bizarre, Born Different, The Undateables and so on.

You don’t need to watch these shows to understand the type of public gaze they attract. Asking a person with a visible difference or disability to appear on a show with such titles, for other people’s entertainment, is insulting and predatory.

While I haven’t watched full episodes of all of these shows, I have observed that the subject of the show never tells their own story.

It’s narrated – I expect by a non-disabled person – with a camera zooming in on the most unusual part of the subject’s appearance, and it’s highly medicalised. For awareness raising. And entertainment. 

And yes, that’s right – I don’t watch the programs but I have an opinion about them. I’ve taken some flak for that. But when people with disabilities, facial differences and rare diseases (sometimes the same type as mine) are featured on these shows, I can have an opinion. 

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Because I live with the stares, the sniggers and ridicule from strangers, and the expectation to educate people, every day. 

I also live with the intimate parts of my illness – the shedding skin, the infections, the screams of pain. I don’t need to televise this, or invite an audience to get their Embarrassing Bodies fix.

Regular viewers can’t understand my disdain from these programs, chiding me for being outspoken about them. When my skin condition is featured on these shows, I always get messages from well-meaning friends telling me the show is on. 

They’re excited to see someone like me on TV! 

Strangers I meet tell me they’ve seen ichthyosis on these shows too.

They often claim to know more about the condition than I do, detailing how long it takes the people featured to bathe and scrub their skin. 

I guess I can thank these shows that I don’t have to discuss my (much quicker) shower routine with a stranger, though!

A producer who invited me on to a show told me, “I must stress that the name does not reflect the sensitive nature of the program. The title is more of an ‘attention grabber’ and not indicative of the human nature of the stories we cover”.

But the titles are abhorrent. They’re not sensitive or empathetic. 

Just like I don’t want to be labelled embarrassing, I don’t want my condition to be labelled as bizarre either. 

And yet I am asked to take part in this tabloid media to “raise awareness”. 

The pay offered is very low, $150 to $250. But the reach is wide – with regularly repeated worldwide broadcasts, and online shares.

In my early days of writing online, just as I was starting to get media interest, I sold my story to a UK-based tabloid – I was a bit dazzled by a media offer.

They assured me it would be tasteful, and that I would have control of my story. 

They interviewed me over the phone, and said they could run the story by me over the phone, but not via email. They paid me a pittance.

When the magazine was published, I was horrified. 

The headline screamed, “I always look sunburnt!” It was full of woe and pity. They got my dad’s name wrong too. 

I’m not proud of that decision.

I’ve been in tabloid magazines since, but I’ve written my own story, in third person, to have some control over how my story is told.

In 2016, an American casting director contacted me about a show he thought I’d be suitable for.

While I usually say no to these, it sounded interesting and I’d just experienced a microaggression – so I thought that maybe, just maybe, my appearance might help change the thinking of people who are scared of my (and others’) appearance. 

We talked on the phone a few hours later.

We had an interview via Skype to discuss my potential involvement in the show. 

It was on a cold Saturday morning in April. My husband, Adam, was not home. 

The director asked me a few questions, and it was clear he knew very little about disability politics or pride. The questions were quite pitying. 

I talked to him about Stella Young and inspiration porn (see Chapter 2) and said I didn’t want my potential appearance on the show to be about that. I told him I often worried about the intrusiveness of journalists, explaining that was why I rarely engage in these interviews.

He told me I could make a lot of money if I was cast, but not if I was difficult. (I guess he sensed from our chat that I can be outspoken.)

About 40 minutes in, maybe less – I don’t have a recording – he told me we were wrapping up and asked if there was anything I wanted to tell him.

“I got married a month ago,” I said.

“Yeah, I was wondering …” he said, scratching his stubbly chin. 

I saw him on the computer screen, leaning back casually, his entitlement to my story just beginning to show.

I thought he might be about to ask me about my dress, or even an awkward question about Adam looking past my ichthyosis.

Nope.

“What does intercourse feel like?” he asked.

He asked what sex feels like. He sat through the interview, thinking that the whole time.

Of course, I was shocked. I told him he had no right to ask that.

He told me he was doing his job. My mind was racing, furious. I had told him, during the Skype call, that I’ve spent a lot of time writing about intrusive questions – and now he’d just asked me one.

I recall him mentioning a woman with a severe facial disfigurement or disability who had never had sex, and that she wondered how it felt.

I ended the conversation politely.

Had the conversation been in person, I think I would have still been polite, though perhaps I’d have slammed the door on my way out.

I was shaking. I recall texting my best friend about it, telling her about the potential money and also that question. I don’t even think I told Adam. I felt so used. So intruded upon.

I was scared to speak out about this at the time. I didn’t want to be seen as difficult, and there was no proof on my end. This is how these types of men get away with it – it’s a form of sexual harassment.

I tweeted about it more than nine months later, naming him and the company he was attached to. And when I did, he threatened legal action, denying it all.

I deleted my tweets. (Now, with the #MeToo movement, I’d be much braver about speaking out about this slimebag and the people who stood by him.)

Would he have asked a woman without a disability about sex? Probably not. 

His actions proved what I’ve believed about this exploitative media – that the subjects are modern-day freak show exhibits, shown very little respect.

I’ve had enough of exploitative media outlets implying my appearance is hideous, and that my private life is available for questioning by inviting me onto these shows.

That’s why I make my own media – to show I’m proud of my difference, and I’m not an object to be ogled at or ridiculed on social media. And to set a positive example for others living with my skin condition.

I know some readers will think my stance on this exploitative media is an absolute contradiction. People have told me so. Pfft.

I blog, regularly write for the media, and quite enjoy having an audience. I am comfortable sharing my image across social media. I put myself out there. So I get it. Why wouldn’t I want extra media attention? Why would I criticise this method of ‘awareness raising’ when I do it via the media too? Aren’t I hypocritical?

I like to be able to tell my own story in my own words. I like to portray the condition realistically and positively (even the difficult things) with positive language.

I don’t want to be in the public gaze for voyeuristic entertainment. I don’t want to be someone else’s moneymaker (for a small inconvenience fee). I don’t want to be the subject of pity or inspiration, and I certainly don’t want to endure the ridicule from viewers. 

I want to tell my story on my terms, changing the disability media landscape. And I encourage others to do the same.

Whenever someone with my skin condition, a parent of a child with the condition, or another disability or visible difference, says yes to being on these TV shows or in a magazine article, they’re feeding the exploitation machine. They’re showing the world our conditions are ugly and embarrassing and implying that the best way to raise awareness is through doing this.

How are the kids whose parents put them on the show in the spirit of awareness raising going to feel? What happens when they read the comments?

How are people with rare conditions going to see themselves when this exploitative media is one of the only ways that people like themselves are represented?

How do you love yourself when people invite you to be laughed at on television and social media?

The commentary around shows like Embarrassing Bodies is like sniggering in the schoolyard. News columnists are calling it “the horror”. People are talking about it on social media. It’s TV that you binge on – excited at the prospect and then throwing up at the gory details.

I came across an audience analysis of what people were saying about Embarrassing Bodies online. Some described it as their guilty pleasure, and another said they “can’t wait to laugh at people then vomit”.

Evan, a child who I met in the USA, is the most delightful little boy. He loves Mickey Mouse and kangaroos. He has Harlequin ichthyosis – the most severe form of ichthyosis – and looks a lot like me. Evan was featured on a TV program in 2016, and the online comments were revolting.

While the media company prided themselves on their sensitive storytelling, they contradicted themselves when they let commenters spurt hate speech, debating Evan’s right to be alive, and making grotesque remarks about his appearance.

I hope he never has to read them.

This isn’t how I want my condition discussed. I don’t want ichthyosis to be gratuitous fodder for someone to laugh at in their living room.

And this isn’t how I want my friends’ disabilities discussed either.

I want to take back the power. I want disabled people telling our own stories, through blogging and performances and YouTube channels and stand-up (sit-down?) comedy and podcasts and even mainstream medias – inviting the public gaze in a much less gawkish way.

This is an edited extract from Say Hello by Carly Findlay, published by HarperCollins Australia and now available in all good bookstores and online. Carly Findlay will talk about her memoir at The Cube Wodonga on March 7, tickets available online.