"I couldn't handle looking like you" - Appearance Matters speech

Here is my speech for the Appearance Matters conference that I gave earlier today. The professor at the Centre for Appearance Research said my story gives the centre incentive to keep researching in the field of visible difference.

My name is Carly Findlay. I have Ichthyosis form erythroderma - a severe skin condition that is genetic and to date, no cure. The doctors didnt expect me to live long - but at 30 years, I am still here! It affects my skin, my eyes, ears, temperature regulation and digestive system. I get itchy and am susceptible to infections. It is extremely painful most of the time I cannot describe the pain. I spend a lot of time at the hospital - in waiting rooms mostly - seeing dermatologists and other specialists, and receiving treatment on the ward when I get very sore. While it is medically challenging, the social challenges can be far more difficult.

I get stared at, commented on, ridiculed and asked questions about my appearance every day. It was particularly hard at school - I just wanted to fit in and look like everyone else. In recent years, I've been told to leave a store because the store owner thought my Vaseline would ruin the second hand clothes she was selling. I've been called ugly and disgusting, been told I should be dead, and been photographed by youths on a train. It's tough, but makes for great writing material!

Often when people see me, they ask me what's wrong with me. Whether there is a cure or an operation. Sometimes they state they couldn't handle looking the way I do.

They assume that my life must be much worse than theirs.

I have just handed in my thesis for my Masters of Communication at RMIT University. My thesis was on the way blogging helps those with a chronic illness form a sense of identity. One of the texts I studied in my research was Pride Against Prejudice by Jenny Morris. Jenny Morris writes about the experience of being different.

Jenny examines the way physical difference “gives non-disabled people the right to invade our privacy and make judgments about our lives”.

She outlines some of the assumptions and prejudices that society makes about those with disabilities and physical differences. These assumptions and prejudices that apply most to me include “That we crave to be normal and whole”, “that we are naïve and lead sheltered lives”, “that we constantly suffer and that any suffering is nasty”, that we can't ever really accept our condition, and if we appear to be leading a full and contented life, or are simply cheerful, we are 'just putting a good face on it'', and “that if we are particularly gifted, successful or attractive...our fate is infinitely more tragic than if we were none of these things”

There is a degree of pity people place on me and others with physical difference. Just this morning a lovely lady on the train patted me and said "I wish you a speedy recovery". I didn't know how to respond so I thanked her and said "I won't recover from my illness". While she meant well, the pity she had for me made the situation awkwards.

The truth is, my life is pretty damn great. I work full time for the government as a communicator and events planner - I guess you could say that I have been a face of my organisation - organising events, meeting and greeting senior staff and community guests, and giving speeches for diversity initiatives.

My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand.

I am a successful blogger, mainly focusing on the challenges and triumphs of living with a chronic illness and a visibly different appearance. My blog has given me a respected voice that I may not have found in real life. Unlike the trolling that happens online, my blog has been the source of love and respect that I often don't get walking down the street. My blog has been my vehicle to tell my own story in my own words. As I blogged:

"This blog has allowed me to tell my story about ichthyosis. It means I can tell the world what it's like from a personal perspective, without sensationalism, and with honesty. With a view to educate people and enable them empathy. I admit, some of the things I've written about and pictures I've posted may have been a little confronting, and even I get a bit sad reading them over. But I've always maintained that I'd like to keep this blog honest.”

“I think it's really important to raise awareness of conditions such as mine. But other than through a blog and public speaking events, I am not sure how it can be done without sensationalising the topic, or the journalist telling a different story to the one the person with the condition has told them. When I see articles or TV programs featuring sensationalised stories about illnesses, I cringe and worry about the damage it will do the the person affected.”

“This is the way I want my story to be told. In my own words. Without editing or sensationalism. It's only fair when so many assumptions are made about the way I look before I even open my mouth or tap my keyboard.”

I have formed friendships with other bloggers, and the confidence that bloggers and readers have given me is amazing. The stories I've shared on my blog has helped people understand what it's like to look so visibly different. I receive emails and comments from people with ichthyosis who have never known anyone else with the condition. I have received emails from people who have told me I have helped them seek help with a dermatologist or counsellor (two people with skin conditions told me they were either self harming or wanting to end their life until they read my blog - my experiences gave them hope). I have also received emails from people who have read my blog to their children to teach them about diversity. And the wife of my favourite celebrity emailed me to tell me she reads my blog - quite awkward considering I have mentioned I love him on several occasions!

I was named a finalist in The Best Australian Blogs competition, run by the Sydney Writers Centre, for two years running (this year there were 31 finalists out of 1024 entrants, and in my category of personal blogs, there were 8 finalists). I am also a successful freelance writer, particularly in the area of disability and chronic illness - I have written for the ABC's Ramp Up website, the Victorian State Government's Divine website, Mamamia, The Hoopla and News Limited.

I also present on Channel 31's disability program, talking about some of my own experiences as well as interviewing people in the disability community.

I have been a mentor at the Royal Children's Hospital's chronic illness peer support program for young people with chronic illnesses and disabilities aged 12-26.

In 2010 I received a Yooralla Media Award for best online commentary for a body of work I wrote for DiVine, in 2011 I received a public service Australia Day Medal for my work around diversity in the government, as well as in the wider community. In 2012 I received a Layne Beachley scholarship to help me further my writing and speaking career in the appearance activism field. This scholarship, along with generous funding from The Royal Melbourne Hospital, has helped me to come to England, to present this speech at The Appearance Matters Conference run by The Centre for Appearance Research. I will also be doing some work experience at Changing Faces. After that I will be going to New York for a blogging conference.

I could choose to retreat because of my appearance. I could choose not to face the world. A customer at the department store I worked at for four years told me "it's great someone like you is out there working and not locked away somewhere". A number of people I know with ichthyosis are afraid to seek work because of their appearances. One woman even told me that I only got my jobs because people felt sorry for me. I choose not to retreat because frankly I can't afford not to work (though some government assistance for us employed people with chronic illnesses wouldn't hurt!), I'd get bored of daytime tv and I would miss personal interaction. I also choose not to retreat because I believe in normalising difference. I want the world to see that I am capable, articulate, educated, beautiful, contributing to the economy and making a difference in society. I want them to see that people like me enjoy fashion and food and live music and having fun - just like the rest of them.

The choices I have made in my life have not been without the encouragement and love from important people in my life. They have taught me resilience and self belief. My parents have encouraged me to get a good education, to work hard and that it's ok to be an individual. My team at the Royal Melbourne Hospital look after my physical and emotional well being. I have wonderful mentors in my managers at work - Viv and Donna have helped me grow and believe in what I want to do outside of my day job. And my friends - while it's taken me a while to form strong friendships - never treat me as Carly with the red skin, but understand my needs as Carly with the red skin. They are fiercely protective of me.

Resilience has also been self taught. The ability to laugh at myself and this often shitty situation has helped. I laugh at how slippery I make things and how my mum didn't pass on her good skin genes to me. The question "how's your skin?" is so common in my life that last Christmas, over a plate of roast duck and leg ham, dad asked, "how's your skin?" I replied, "yeah a bit sore, the infection is improving but I'll be ok with some trifle on the couch with my legs up." He was asking about the crispy duck skin! I also have to laugh at the stupid things people say and do in reaction to my appearance. Like"I know exactly how you feel, I have my eyebrows waxed every month". Or when my lovely manager had cancer and I told her how annoyed I got at people asking me why she has no hair, and she said people ask her what's wrong with me too!

The stares, comments and ridicule received has helped me to achieve my goals and awards. I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial difference, chronic illnesses and disabilities. While it is difficult for me, and the hurtful things people say stick, my facial difference is also a positive. My appearance is a talking point – sometimes for the worst, but so often for the better. As mentioned - my appearance is now my brand.

The Centre for Appearance Research asked me about what I'd like to see and do around appearance activism.

Ultimately I'd like to set up a Changing Faces in Australia. My work experience there in London will give me more insight into what they do. I want to help young people with facial differences and disfigurements to become more confident about the way they look, and to help them develop the skills to cope - with view to reduce self loathing and self harm and suicidal thoughts. I want to educate the wider society that it's ok to look different and facial differences and disfigurement is nothing to stare or laugh at.

I would like there to be a greater representation of diversity in the media, so we can normalise difference. Body image and diversity is so much more than fat and thin, and it's so good that powerful women in the media like Mia Freedman, Wendy Harmer, Francesca Martinez and Stella Young are bringing diversity into the mainstream. (Last Month I featured on Mia Freedman's website modelling my favourite outfits. The comments I received were incredible - and none were about how red my face is.) i also think blogging is at the forefront of diversity in the media- showcasing all types of people - their image and stories. I'd like girls to know that it is ok to be interested in fashion and taking pride in their appearance even though they have a facial difference or disability. I'd like wider society to see beauty in those who look different.

Hopefully we'll see a person with a disability on the front cover of a magazine. Hopefully the Nobel Prize Winner will be as popular as Miss Universe. Hopefully we'll aspire to be as smart or as kind as a celebrity, rather than aspiring to be as thin or as flawless as they look. Hopefully there will be less judgment and pressure about our appearance - being kind, open-minded and compassionate (and living a great life) is so much more important than looking good.

Finally I'd like people with facial differences, chronic illnesses and disabilities to want to reach for the stars and achieve anything they want, even if it exceeds the mediocre expectations of society. And I want the mediocre expectations of society to change - I want them to know that people like me, people like my friends in wheelchairs or with mental illness or terminal illnesses can become school captain or CEO or Prime Minister. I want our voices to be heard and for people not to look disgusted when they see us. I'd like people to stop thinking our lives are worse than theirs because of the way we look.