What to consider when the media asks you for your story (about life with ichthyosis or facial differences or disabilities).

I receive emails from journalists and media makers asking me to tell my story about life with ichthyosis about once a month now. Most of these are for tabloid media, but some are for public media and well respected publications and programs. I've said yes to a few and no to more. My friends with ichthyosis and other facial differences and disabilities also receive media requests - some have taken opportunities up and that's great for them!

I've sold my story to two tabloid publications. I regret one of them because I had no control. It was sensationalist, they spelt my dad's name wrong and they hounded me doe the story. The other was far more respectful - letting me write a follow up article in third person, even. And I was paid well. I've been on radio many times, a couple of commercial TV programs and on many websites - and for the most part, I've had positive experiences.

I also write for a number of mainstream media publications - some of which could be classed as tabloid. But writing myself is different to being written about.

I blog to ensure I have control over the way my story is portrayed and how Ichthyosis is represented. This has led to me writing for mainstream media publications and speaking on radio and TV and some podcasts.

It's also led to me developing thick skin. Had it not been for my already developed online profile, I'd never give my story to anyone if I didn't have this resilience. I also have the benefit of a media degree and keen interest and a little knowledge of how the media works to help me make a decision. I have media contacts and prefer to pitch my story myself. As I've written previously, I prefer to write for publications that I read and respect, but sometimes I'll tell my story to those I don't, to help influence a new audience.

Tabloid journalists can be pushy. They can lurk in support groups, reading private discussions and then they pounce - assuring you your story is in good hands and will help others. They can prey on people at their most vulnerable, drawing out private details and photos through sneakily winning trust. (I'm cynical!)

Rare medical conditions such as Ichthyosis are not always portrayed in a positive way. Sensationalist, voyeuristic and othering language is used. Cameras zoom in on symptoms, dehumanising the subjects of the story,

Subjects of articles and programs are often portrayed as a victim or hero. Commenters can be brutal. (And even when you write your own story, there's a risk of the sub-editors sensationalising a headline.)

I shared Sarah's story in February. She wrote it for me. Sarah lost her eye as a result of domestic violence. I took great care in publishing it, Waiting six months after receiving it - she was safe from her ex husband then. I provided a trigger warning and links to support services. And an international tabloid wanted that story too. They asked me for her details and when I didn't pass them on, they tracked her down on Facebook. They pushed her when she was at her most vulnerable, convincing her to send graphic photos that she can no longer bear to look at. They didn't put a content warning nor link to support groups. She didn't know or read the publication when she was approached, and tells me she'd never read it now. She regrets it and wishes she'd listened to my advice.

Two friends - one with a facial difference and one with Ichthyosis - told me they sold their stories to media and regret it.

Jackie said:

"I [told my story to the media] and regretted it. Terrible article, made up scenarios and when I explicitly told them I didn't want it published after having a read through they said it was tough and was too late to pull it. I was distraught and there was nothing I could do. I was annoyed at myself too as I'm not naive when it comes to media, but at the same time wanted to set a positive example... can't win!"

Rebekah told me:

"I sold my story to a magazine here in NZ. I wish I had the opportunity to proof read it first ... they didn't really portray me the way I wanted them to. [I was portrayed] like I wanted everyone to feel sorry for me. I wanted to be portrayed more as someone who is out in society making a worthwhile contribution and making most of every opportunity".

But telling your story to the media might be a really positive, empowering thing too! A friend with quadriplegia told me that when a newspaper covered her story, she felt listened to because the journalists were genuinely interested. Your story might help many others, and it can open up some amazing opportunities like further media appearances and getting in touch with others who have your condition. A close friend got a cookbook deal after appearing on a tabloid news program. And the media outlet might be really awesome - I loved working on No Limits - as they allowed people with disabilities to be in control of our stories.

Last week a good friend contacted me for some media advice. A production company seems to be scouring the whole internet for people with Ichthyosis, wanting to make a film about patients with rare conditions meeting for the first time. I say scouring because two other friends have asked me if I know anything about this company. I don't know much, but I've also received three emails from them, asking for my involvement. I've turned them down. It seems they're preying on people with the condition.

I gave my friend the following advice:

It pays to do some research before saying yes. Here are some questions to ask yourself and the media representative.

• Would you or do you already watch the show or read the publication?
• What else has the film company or publication made?
• How sensationalist is the publication or the program?
• Will the title of the show be derogatory? (Think Embarrassing Bodies or The Biggest Loser.) What about the title of the article? (The Pick Me Up magazine article screamed I ALWAYS LOOK SUBNURNT!)
• What is the reach? Is it going to mainstream TV? A large publication? Is it tiny?
• Do you get paid? (You should!) Is it enough compensation to cover the instance that you'll be misrepresented?
• Can you tell your story to other publications or programs, or are you limited by an exclusivity clause?
• How much control will you have ever the story and filming and editing? Will they let you see the final draft and allow you to suggest edits?
• What language do they use? Is it disability positive? Do they use person-first language ("person with disability")? Do they use language that portrays disabilities as tragedies ("suffers from", "wheelchair bound")?
• Will the story be pitying? Will you be the hero of the story? (neither are good).
• Will it be inspiration porn?
• Can you handle the attention of being in the media - good and bad? Is there someone to support you?
• How will this benefit you? How will this benefit others?
• Will they represent you well - alter or edit quotes or even photoshop your image?
• Have you got permission to tell your child's story, if that's what the media has asked for? What will be the long term ramifications?
• Could you tell your story somewhere else - to a more reputable publication?
• Could you tell your story yourself? (Maybe start a blog or start a YouTube channel!)

It's ok to say no, and it's ok to say yes, but only if you're 100 percent comfortable with it. I'd be very careful about how Ichthyosis is portrayed. It can be so exciting to be approached by the media, but regretful if it goes wrong.

Further reading

A Guide to Reporting on Disability - People with Disability Australia

Face equality in the media - Changing Faces

Advice on disability language - Arts Access Australia

Have you told your story to the media? Was it positive or negative? What advice would you give?

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