Last month I wrote some advice you might like to consider when approached by the media to tell your story about your rare medical condition/disability/facial difference. The blog post was received really well - with friends noting down the questions for the next time they're asked to appear in the media. You can read that here.
For my own amusement, I put my own advice to the test when I received yet another invite to take part in a documentary about rare medical conditions. I think the producer just expected me to say yes, of course I'll be exploited by a voyeuristic program.
I emailed the producer the questions I stated in my post. I was frank with her - explaining my concerns about how they portray disability. I wonder if she's ever had such rigorous, assertive questioning before?
The producer surprisingly emailed me back, addressing my concerns. She did so empathetically and comprehensively, I admit. She reassured me they will not have exclusive rights to my story, and they will not use the disempowering language like "suffers from".
But the show fails. Epically.
It's called Body Bizarre. The sensational title is a drawcard. The producer said "I must stress that the name does not reflect the sensitive nature of the programme. The title is more of an "attention grabber" and not indicative of the human nature of the stories we cover." The fact different appearances and sensational titles attracts viewers is mawkish. The title is abhorrent. It's not sensitive nor empathetic. Just like I don't want to be labeled embarrassing, I don't want my condition to be labeled as bizarre either.
The production company will offer me "a $200 inconvenience fee". What. A. Joke. I know my worth. And I suspect the company is making a hell of a lot more money than to scrimp on compensating their subjects.
The producer provided a link to one of the episodes, detailing a friend with harlequin Ichthyosis. The narrator uses phrases including "suffers from" and "normal skin" - very othering, pitying language. In the first minute and a half, the camera zoomed in on my friend washing her face, creaming her body and cutting thick skin off her feet . And I ask myself, why is it ok to broadcast these private bathroom moments in the name of medical information? I didn't watch any further.
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?!
Well. 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 money maker (for a $200 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.
The public gaze has moved from the human spectacle of The Lifestyle Channel to our social media feeds now - with smartphones allowing for social media paparazzi. This new wave of paparazzi are creating inspiration porn for likes and shares. Karin Hitselberger who blogs at Claiming Crip recently wrote:
"Disabled people are not tourist attractions, science exhibits or zoo animals. You cannot photograph us or stare at us because we exist in public spaces...
I thought of the difficult situation of being disabled in public in the modern world.
People have always stared, but now staring has gone viral."
And it's programs like Body Bizarre that encourage this social media paparazzi. People think it's ok to stare and capture their curiosity through their smart phones. The focus on people with disabilities doing every day things, existing to inspire and remind viewers their lives aren't so bad after all perpetuates the need to photograph someone with a disability doing something ordinary in public, upload and inspire.
During our Quippings - Disability Unleashed shows at the Melbourne Fringe Festival, we formed a conga line - inviting stares and staring back. While our audience is progressive and assumably not the type to stare at people with disabilities, it felt good to pretend I was turning around the staring I receive regularly. During the last show, when I felt my most relaxed and uninhibited, I pointed at someone and let out a cackling laugh. It was for all those who've done it to me. It felt so good.
Kath Duncan, co-producer of this year’s Quippings Fringe shows believes the uniqueness and power of our performance is because "we, the diverse and disabled performers, are in control of the space." Kath said:
"Quippings was born because the opportunities for Deaf and disabled people to present our stories our way were limited. We formed to produce, write, direct and present edgy and intimate stories, working our own bodies as creative disability pride in action. Defying how others see us. We are over-examined and over-written with weird or negative assumptions pretty much every day so this year we fully embraced that tension of seeing and being seen by circling the audience every night as performers and disabled people, staring at them and inviting them to look at us. It was very powerful and a real ice-breaker for us and for the audience, examining them like we so often experience, while showing them it was ok to look at us just as we are, without mediation by some non-disabled commentator or editor."
The Conversation wrote of disabled performers at the 2015 Melbourne Fringe Festival - asking "where did all these artists with disability come from, and why are they suddenly visible?" The article describes the move from performances where "the disabled are the passive subjects of the "able" gaze, within forms of performance designed by and for "able" artists" to "disempowered or marginalised communities... progressively claim[ing] the right not just to be visible in the cultural landscape, but to tell their own stories."
Body Bizarre has created passive subjects as objects for public scrutiny, whose stories are narrated to evoke pity - a concept The Conversarion described. But through people telling our own stories through blogging and performances and YouTube channels and standup (sitdown?) comedy and podcasts and mainstream media is taking back that power - inviting the public gaze in a much less gawkish way.
When we invite the public gaze in on our own terms, it's very empowering. We are choosing how we want to be portrayed - taking on the tabloid and social media paparazzi predators.
I'm still not here for your entertainment (or infotainment) unless I invite it.