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When you have a visible difference or a disability, you may spend a lot of time noticing how society reacts to you looking different to the masses. There’s curiosity, exclusion, horror, patronisation, encouragement, inclusion, rudeness, surprise, honesty, fear, ridicule, and great compassion and kindness. I think I’ve experienced the full range of human reaction living with my visible difference – a rare and severe genetic skin condition called Ichthyosis, meaning scaly red skin.

While it is so important for awareness about disabilities to be raised, the media often doesn’t present visible difference and disability in a positive way. We are the villains (think Two Face in Batman or Freddy Kruger), a person to be ridiculed (remember the short statured person, repeatedly described as a dwarf by the media, who was hired for entertainment then set alight by a footballer on Mad Monday?) or described as “wheelchair bound”. People without disabilities play us on TV – there’s Artie in Glee and Dustin Hoffman in Rain Man, and prime ministers have been known to pat people with disabilities on the head - maybe through condescension or misplaced kindness?

Social media can be just as bad as the mainstream media – with the heroifying and ridicule of people with disabilities. I can think of a lot of social media memes that picture people with disabilities playing sport, and an accompanying caption “the only disability is a bad attitude”. There is also the audience reaction that is no longer limited to discussion in the privacy of one’s own home – I cringe when I see people clicking and commenting on photos of sick babies on Facebook - there’s a sense of naivety that a click for a prayer will donate money for a cure, and also the cruel reactions to the pictures.

I have a great problem with not being in control of my story. That’s why I write and speak my own. I want it told in a respectful, non sensationalised, non patronising way. And I don’t want my condition to be labeled exploitatively by the media just to draw in readers. Since I’ve had my blog, it’s given me more confidence to tell my story across a range of publications and on a community TV program called No Limits, and also for me to consider approaches from the media to tell my story. In July 2013 I was verbally abused by a taxi driver – and I wrote about this on my blog and for Daily Life. It was also reported (very fairly and sensitively by a journalist on News.com.au.) I found it interesting that when I have told my own story, the readers’ responses have been far more empathetic than when a story was written about me.

And that brings me to participation in disability related media when you’re not in control of your own story.

Last year Carly discussed how the TV program The Undateables had moved her and restored her faith in humanity. At that stage I had not watched it – I was reluctant to do so because of the way I feel about Embarrassing Bodies (I have a big problem with the title and viewers’ gross out reactions to Embarrassing Bodies, but after reading Carly’s thoughts on it and asking me what I thought. I watched The Undateables on iView.

The Undateables shows the stories of people with visible differences and disabilities trying to find love. They sign up to a dating agency and are matched with potentially compatible dates. The program highlights the struggle people with visible differences and disabilities face with self-esteem, being accepted and also the discomfort that society sometimes has around being in the company of a person who looks different.

I found it very similar to Beauty and the Beast – The Ugly Face of Prejudice which pairs up self obsessed, vain beauties with people born with disabilities or acquired disfigurements, and helps the ‘beauty’ do away with the importance placed on image. The premise of both The Undateables and Beauty and the Beast is to showcase the reality (if a reality TV show can be deemed a reality) of the prejudices faced by people with disabilities and disfigurements, and change peoples’ perceptions and value of appearance. Both programs were very sensitive, allowing the viewer to feel empathy with the participants (I think anyone could relate to the situations of the participants – both those with visible difference and disabilities and those without), and I felt like they invited less ridicule than Embarrassing Bodies.

However, I completely disagree with the term ‘beast’ or ‘undateable’ used about someone’s appearance. It is these labels that create negative perceptions and exclusion towards people with visible differences and disabilities. Twenty one complaints were made to the British Advertising Standards Board after the ad for The Undateables was aired. Complainants said the title was offensive and derogatory towards people with disabilities, suggesting they were “inevitably dateless and incapable of having a personal relationship”.

Raymond Johnson, a participant in The Undateables, told The Guardian that he has received a great response from strangers since appearing on the program (he feels like a celebrity!), and he believes the program has helped change attitudes towards people with disabilities. “It was done really impressively, apart from the title,” Johnson said. “If there is going to be a third series, they should change the title”, he told The Guardian. A friend of mine, Nelly, also with Ichthyosis, has written on my blog about the positive experience she had on Beauty and the Beast. “[Beauty and the Beast] helped me to get more confidence and I wanted to show people what I had to do keep my self healthy and alive”, Nelly said.

It is a relief to me that both Raymond and Nelly have had positive experiences participating in these TV programs. Their experience and watching the programs also shown me that just like with meeting people with a visible difference or disability and forming an initial judgement based on appearance or a label, I need to get to know the program by watching it rather than judging it by title alone. And I encourage people without visible differences and disabilities to watch these shows with an open mind too.

The UK’s Channel 4 has made a commitment to disability programming - and these programs have filtered to ABC in Australia. I hope the Australian media has the same level of commitment to disability programming in the not too distant future.

Carly Findlay is an award-winning writer, speaker, TV presenter and appearance activist. She likes food, travel and Darren Hayes. Carly blogs about all of her loves as well as what it’s like to live with a visible difference at  Carly Findlay