Permission to shine - my time with Rick Guidotti

Rick Guidotti brings so much joy into this world. I spent five days with him, and have been wowed by his purpose, intellect and his ability to make people feel special.  His new motto is
"Change how you see. See how you change". He does this through photographing people with genetic differences, just like he would photograph supermodels. The photos enable viewers to see the person, not the condition.

When Rick Guidotti was a fashion photographer, he was always told what was was beautiful. He photographed the supermodels known by their first name only - Cindy, Claudia, Naomi, Christy. But he didn't only see beauty on the covers of magazines. In the late 1990s, Rick saw a beautiful girl outside of his New York apartment. She had long white hair and pale skin, radiating beauty. She had albinism. Rick did some research on albinism, looking at medical text books. He was heartbroken by what he saw - the people featured in the texts were just medical specimens - their eyes and genitals blocked out. The people photographed looked sad, sick, and Rick described them as "defined by their disease". They were not photographed to show their personality, they were photographed to show their condition. (When I was a child, I spent many hours in a cold hospital room being photographed for similar text books.) He also saw negative representations of people with albinism in movies and on the internet. Rick wanted to change the way people with albinism were represented in medical text books, as well as in society, and so he contacted the albinism association, asking if he could work in partnership with them, taking photographs for text books - "showing the world the beauty of albinism". At first the association was reluctant, concerned about sensationalism and exploitation. But then he put forward the idea of a genetic support group with the association, and suggested they could oversee his work.

His first photographic project was with a young girl called Christine - he said she was just beautiful, but afraid to hold her head up high. She had no self esteem as a result of being teased about her appearance every day. His studio was set up from the day before, when he photographed Cindy Crawford. He treated her just as he treated Cindy, holding up a mirror to her and convinced she was beautiful. He said that at the end of the session, she held her head up high, working the room, and had the confidence to change the way society viewed her. In 1998, Rick's work was featured in Life Magazine, showcasing a range of people with albinism.

Since then, Rick has been helping many people feel more confident through sharing their lives through images, and for the world to "see the beauty in all differences". He set up Positive Exposure with the view to change the way society views people with a wide range of genetic differences and medical conditions. He attends medical conferences where he meets people with many conditions, taking their photos. When presenting, he knows everyone he has photographed by name, referring to them as his good friends. Although he is an artist, he demonstrates great fluency in medical terminology, and he told me that he picks this up through spending time at these conferences and working in hospitals. He also holds exhibitions of his work - one is coming up in Grand Central Station, New York, in October. Below Rick stands in front of part of his Melbourne exhibition.

He wants to show the world that people with differences are children, having fun, full of personality. Rick has done so much good work that you need to know about. You need to see him in action, because he is larger than life, so vivacious. You can watch his TED talk to see why I am so in awe of him.

Rick knows my dermatology geneticist and she told me about him just before I went overseas. They have done some work together and she said she uses his Positive Exposure images in her teaching work at university. When I was told Rick was having an exhibition at The Other Film Festival, where I was a judge, I was very excited, introducing myself to him by email. I was lucky enough to spend a considerable amount of time with Rick when he was in Melbourne for The Other Film Festival. We featured in The Age, watched films, discussed beauty and genetics, and he took some photos of me. We bonded when we met at The Age interview. 

And then again at opening night.

On Saturday morning we had coffee (hot chocolate) with my dermatology geneticist, and we discussed genetic difference and beauty. We talked about the way I can become a change ambassador here in Melbourne. I felt like I was valued for my academia and experience. It was a good meeting.

Rick has the ability to make me feel like I am the most important person in the world when he spoke to me. And it wasn't just me who felt this - he had time for EVERYBODY he met at the festival, and he especially made those he photographed feel like a supermodel. Just like those supermodels are known by their fist name only, the people he photographs are known by their first name. And he is so passionate about his work. I interviewed him for No Limits, his eyes were lighting up,  and he got more and more excited sharing stories of the young people whose lives he has changed through photography.

Rick took some photos of my friend Jess and the shoot truly made her day. She commented later that after years of hating her body, and having people comment negatively on it, she felt like Rick saw her true beauty and made her feel special.

He told me about the way showcasing external beauty in people with genetic differences helps individuals develop confidence. Positive Exposure has an equation: "Self acceptance = self awareness = self advocacy". He said, like Jess, one girl came to the realisation after a photo shoot that while society will always stare, the thing that has changed is that she no longer hates the way she looks.

Many of the people he has photographed have become ambassadors for change, educating their fellow school students, and even setting up branches of Positive Exposure across the world. Rick said "We need to come up with the opportunity for people to meet you through our photographs". And his photographs do just that, moving away from traditional medical images and showing people having fun in a more natural environment.

Rick Guidotti wants to "make the idea of living with difference relevant, and to celebrate difference every day, not just on International Day of People with Disability or Diversity Week". For someone like me, the reality is, looking different is every day. It doesn't come and go. Every day I am faced with judgment, staring, assumptions and people looking away, because their comfort zone is challenged by my appearance. Every day, when I step outside the house, or even on the internet, I have no choice but to make people think differently about people with genetic differences. That we are people with good lives and intelligence too. It loathes me to say "just like everybody else", but people like me are just like everybody else. There is a perception in society, the media and the medical profession that people with genetic differences don't want to be photographed, that we don't want to stand out any more than we already do. That we don't have a right to beauty, because our appearance defines us.

And while there is more to life than external beauty, it is a part of life, and people with differences have just as much right to feel and be told they're beautiful as "everybody else". it's not about vanity or conforming to images on magazines. It's being acknowledged for our beauty.

I have been asked why, when I am not keen on people staring at me, that I am so into fashion and love being photographed. The answer is this. Because I like to look the best I can. I heard Rick say "sometimes looking away is worse than staring". Yes. It is. I see people in the street, busy in conversation, and then the catch a glimpse of me and look away in disgust. This hurts. When I dress up in something fabulous, I want people to look at me and think I am beautiful, not look at me in disgust. I want them to look at my face and see my smile and my eyes and my redness and see that I am living. I am happy.

Rick took some photographs of me when I interviewed him for No Limits. I was photographed with vaseline smears and scale in my scalp. But that's ok - I was photographed as me. No airbrushing, no holding my tummy in. Just happiness, confidence and laughter.

He used this photo in his presentation on Sunday afternoon. The audience cheered, knowing me from working at the Other Film Festival.

He certainly made me feel like a supermodel, throwing in the "work its" and "slink over to mes". He said, on a number of occasions, "see how beautiful you look Carly". And I did. Rick gave me permission to shine.Through him photographing me, I felt beautiful, and proud to feel so. Apart from when I have severe infection on my face, I am never one to duck my head so not to face the world. It is ok to want to feel beautiful, and want others to see you are beautiful, even when you don't fit the traditional mould of beauty. Because as Lady Gaga sings,

"There's nothin' wrong with lovin' who you are

She said, 'cause He made you perfect, babe
So hold your head up, girl and you you'll go far."

I ended my interview with Rick by asking him whether he believes someone with a genetic difference will be on the cover of Vogue magazine. He doesn't think so, but he believes that the media needs to recognise that beauty is diverse. Magazines need to recognise the beauty in people with genetic differences.

I was a little sad when he left. But he said, "don't worry Carly, we are family now". I think I just met my hero. Thank you Rick for making me feel so special. You have brightened my world.

More about Rick's project can be found at Positive Exposure

If you can't say anything nice...

I was recently at an event with my parents, not knowing many other guests there, surrounded by pretty young things wearing gorgeous dresses. I glammed up for the occasion too - my pink Cinderella skirt from St Frock, and my silver jacket and floral top that I wore to the AusBlogCon (though I always seem to feel really overdressed due to the amount of layers I need to wear!).

While I was talking in hushed tones with my Mum about how beautifully dressed some of the girls were, it turned out some of those beautifully dressed girls were talking in hushed tones about me too.

Later on in the night, after a few wines, I went to the toilet, and got talking to a girl I met on the way. We talked through the toilet walls, small talk - that we liked the food, that the event was a great one, that our shoes were killing us.

Then, out under the fluorescent lights as we washed our hands, the girl turned to me, looked closely, and said "so what happened?". What happened to my face, she meant? "I was born this way", I told her. "And what happened", she asked again. Drunk people can be hard to reason with. "I was born like this, that's what happened", I told her, again.

She asked me if it was a skin condition, I said yes, and I told her the name. Drunk people are also quite honest. "I thought it was a skin condition", she said. And then she added "The people I am with were arguing about whether it was a burn, or sunburn all day".

Right. So while I was probably complimenting some of those girls, they were discussing my appearance.

I know this happens. People ask me all the time. People stare. People ask friends or family or colleagues what is "wrong" with me. it's curiosity. But I didn't even think people would be spending more than a few seconds thinking or commenting about my appearance or discussing appearance in general in a negative way. Certainly not when there's so much beauty and fabulous personalities and wonderful acts of kindness to compliment. And I thought about the shallowness of being so image focused.

I went back into the room happily laughing with the girl I met in the toilet. We went on to discuss the cute boys in the room, arms linked like old friends. She wasn't meaning harm. But it our toilet discussion left me feeling a little self conscious, and got me thinking.

Is it ever appropriate to negatively comment on someone's appearance (how they look or dress, or their race or disability)?

When I think about my own behaviour, I can guiltily admit that there has been times when I've said quietly to a friend "what is she wearing??", or even made a comment about someone's weight. I know. I shouldn't. But it is rare. And the comments never turn into a conversation. It's an instant reaction, and I wouldn't then give their appearance a second thought. And I'd certainly never make judgment about someone's face, disability or race. Never.

My Twitter friends gave me their opinion about the appropriateness of commenting on appearance (and their opinions made me proud):
@mscurlypops: my motto is that if you can't say something nice then say nothing at all!

@KITsDad: No. Unless they're a hipster, then go for it.

@keepcatebusy: don't undrstd why any1 would ever want 2 say something nasty abt some1 else. Ppl only do that 2 make themselves feel superior
 
@_jaime_: when they're wearing socks and thongs -yes. :)

@rhiannoncra: No. Have your opinion, but don't voice it - if you don't have anything nice to say, don't say anything at all!

@Aneets1: Never. It seems a lot of people lack basic manners. x

@pomegranitaa: If their fly is undone or tag hanging out = yes. If you don't like their shoes or think they look slutty = no.

@Denwise1: never appropriate. Ever. "if you can't say anything nice don't say anything at all is old maxim" So hope not 2 u

I tweeted to Sydney Shop Girl "Seriously, when did negatively discussing someone's appearance outside of gossip mags become a valid topic of conversation??"

Glossy mags thrive on the way celebrities look. They criticise, point out 'flaws' and persuade readers to aspire to an ideal. Too thin, too fat, too much cellulite, acne scars, best diets, beauty treatments are the secret to happiness. Hell, even my appearance was (positively) highlighted in a women's mag. Image sells.

I was thinking about the way we encourage positive body image in the media. The National Body Image Advisory Group, chaired by Mia Freedman, is an Australian Government initiative, "committed to tackling negative body image from a national perspective, by helping young Australians to build confidence and resilience against the body image pressures that they face.”. The group recently launched new initiatives to promote healthy body image in Australia. These initiatives include the establishment of a voluntary code of conduct for the fashion, media and advertising industries.

The discussion of my appearance at this event made me wonder how far the media has come with portraying a diverse range of people realistically. And wondered whether the media is still giving the public permission to discuss and criticise peoples' flaws. Like the colour of my skin.

It's never ok to negatively comment on the way someone looks. Even telling someone they look tired may be taken as criticism. If you are going to comment on someone's appearance, tell them they look beautiful. Compliments are fare nicer to give people. And I think it's about time the media starts paying more compliments to celebrities' appearances, instead of criticising them. Perhaps this act by the media will mean every day people will be less critical of those who look different.

Carly's guide to top beauty survival products (part 2)

Yesterday I shared the beauty survival products I use in the shower, for my hair and skin. Today I am sharing the products I use when I am sore, and the 'luxury' ones.

The list is a modified challenge set by My Favourite Things.

Note - these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

Soreness

When I am sore I usually have a bath. I use a combination of these three products - all from the supermarket. Olive oil and table salt, or bleach.

I keep my olive oil in a pretty ceramic decanter in the bathroom. I use about a cup each of oil and salt to a bath two thirds full of water.

Bleach baths are not scary. They reduce inflammation and infection, and actually moisturise. I use half a cup of bleach to a bath two thirds full of water. Bleach baths were recommended by my top dermatologist. And he knows his shit. I even splash the water on my face.

When I first had a bleach bath, I did it at my parents' place in case things went wrong and they had to rush me to hospital. Nothing went wrong. It did reduce the inflammation on my face and Dad kept singing Michael Jackson's Black or White. It was funny.

I also soak chux cloths in salt water and use them as face and body compresses when I am sore.

I use these creams (on my body only) when it's sore. Silvazine cream and Diprasone ointment.

Usually these are last resort options - when I am almost dead or in hospital.

Silvazine is a burns treatment. I use this with bandages like a mummy. Like this. (Except never Silvazine on my face.)

Diprasone is used on my body too. Maybe on my face, but I think it's more likely to be Sigmacort.

Both have side effects. Silvazine can be absorbed into the body. I fear I will end up like the guy who turned blue from absorbing silver.

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I probably won't turn blue. It's too expensive for me to stock up, and the PBS does not prescribe a great amount anyway. But turning blue would be exciting for me! Silvazine also dirties clothes.

Diprasone is a cortisone and thins my skin so I can end up with sore patches after a week of use.

Fortunately I don't use these frequently.

There are other creams I've been prescribed but the combination of cost and side effects leave me choosing the ones I really need/can afford.

Luxury items

I guess these are my real beauty products. Luxury items!

I only use Calvin Klein Eternity perfume and Lucas paw paw ointment each day.

I love the subtle smell of Eternity. Sometimes I use Estee Lauder Beyond Paradise or the Body Shop's vanilla oil. I either spray the perfume on my clothes or dot the oil on cotton wool, roll it so the oil is on the inside of the cotton wool and won't touch my skin, and stick it down my bra. 

Paw paw ointment is used on my lips and hands during the day. Vaseline doesn't moisturise my lips like paw paw does. 

The other products are 'sometimes products'. For special occasions.

Body Shop Brazil nut define and no frizz hair cream is brilliant for softness and curl.

Lush American Cream conditioner is good as a leave-in styling product. It creates tight ringlets and smells good. As a real rinse out conditioner, it leaves my hair with the Pantene effect - siliconey and a very scaly scalp. Beware though, if it rains, it may run down your face. I had the experience of a rainy night on Lush-styled hair and it made my face infected :(

I sometimes use L'Occitane shea butter on my lips and hands. It smells of rice pudding, and is so gentle. There used to be shea butter lip tints sold in Australia, and I liked the bright red one. Sadly the store does not stock them anymore.

Speaking of lips, lipstick (or gloss, whatever it is called) and nailpolish is the only true makeup I use. I use lipstick about twice a year. I got some freebies last year and here I am wearing some, on set at No Limits.

I hate removing nailpolish so I usually only wear it on my toes.

It was fun compiling and writing this extensive list.

I hope you found my list interesting and of course, useful. I am particularly keen on hearing back from people with ichthyosis. There is nothing glamourous about my beauty survival regime. It's relatively cheap, but I only wish more of it was listed on the PBS for the Medicare Safety Net. Please remember, these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

Carly's guide to top beauty survival products (part 1)

After my first vanity, beauty and prejudice piece I wrote last week, who would have thought I'd be writing a blog entry devoted to beauty products? And who the hell thought I'd NEED such products?!

 

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Hold on, keep reading. It's all relevant!


My Favourite Things has set a list challenge that I'd thought would be both fun and informative to do on my blog. I have modified the list to categories that are relevant to my own life.

I don't use any make up or many off the shelf body products. I wanted to share my usual beauty product routine with you though. Or survival product routine as I call it. It may be useful for you if you have sensitive skin or ichthyosis.


Note - these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

Shower

I shower twice a day.

For about 10 minutes.

The morning is laborious: wet hair, leave in shampoo/condition, scrub nails (with gentle soap and nailbrush) wet ears, wash face and ears, wash body, comb scalp, rinse hair.

Night is easier: Wash face, wash body, scrub nails, stand under hot water.

I wash my face with a facecloth and plain water.

I wash my body with simple products. Hamilton Gentle Wash (or QV, whichever is cheaper) and sometimes bath oil (again, sometimes Hamilton or QV).

 

I only use these products on my body, never my face.

I have also used Cetaphil Restoraderm body wash recently, which has been good for the fatter parts of my body but makes things sore in places where the skin easily rubs off (particularly chest and feet). And it's expensive too. But can be used as a shampoo.

If I am sore (with infection) I will use Microshield handwash in the shower, particularly when I am in hospital.

Moisturiser

My moisturising regime is also plain and simple. Cheap. And very greasy.

 

It's good old customised (by the chemist) and prescribed (by the doctor) vaseline. I call it cream.

70 percent soft white paraffin and 30 percent liquid paraffin. In the cooler months the ratio is changed to 60/40 for easier application.

It comes in 500 gram tubs - I get about five kilos every month.

For easy transport in my handbag I use little jars of vaseline brought from the supermarket.

I apply this all over my body after my showers, twice a day, and then when needed.

Everything I touch is greasy. Everything.

Don't give me the 'vaseline is polluting your body' lecture. Particularly when you're smoking.

Sometimes I use Elidel in addition to my cream to reduce the redness on my face before a big event.

I can't use sunscreen so I cover my body up and wear a hat.

I also drink a lot of water to keep my skin hydrated - perhaps three to four litres a day.

Hair

I have been a recent convert to sulphate free shampoos. I used to use 'gentle' ones, or medicated ones. But these irritated my scalp, leaving it itchy, scaly and at worst, hairless. I have finally found shampoos that wash my hair well and are gentle on my scalp.

I generally wash every second day and condition every day - all during my morning shower.

For the past few years I've been alternating between Dermaveen and Alchemy products

I started using Alchemy gentle shampoo and macadamia and wheat conditioner about five years ago, and it was like a miracle - all the scale was easily removed from the front of my scalp.

My dermatologists did advise against using plant based products because specialists can't predict how the ingredients will react with my skin. But Alchemy has been great for me.

Dermaveen shampoo and conditioner is, I guess, a more medicated product. It's quite thick and leaves my hair ringlety. It is also good for my scalp.

Recently I was recommended Modern Organic Products shampoo and conditioner. They are sulphate free.

They wash and condition my hair well - leaving it soft and silky, and my hair styles well when it dries. Pricey though! I spent $53 on these.

Every day I comb the scale out of my hair during and (in more detail) after my shower. It can get messy but has to be done. Once, a former manager pulled some skin from my hair at work. Ooops.

I always towel dry and style with my fingers. Sometimes I will use a hairdryer. A straightener will probably do damage to my hair or worse, catch on fire from my cream.

My form of ichthyosis means my hair breaks off at the scalp. So I try to avoid pinning or tying it, or using harsh styling products. When I was 15, it turned into an undercut, and I had big patches without hair - very bloody and itchy and scaly. Really difficult. It is prone to small patches now, usually caused by comb nicks.

When my scalp is extra scaly, and because I have inherited my Mum's African hair in the form of my Dad's loose curls, I use an occasional treatment of olive oil or Sorbolene through my hair and scalp overnight.

I have two more categories that I will cover tomorrow.

I hope you found my list interesting and of course, useful. I am particularly keen on hearing back from people with ichthyosis.

There is nothing glamourous about my beauty survival regime. It's relatively cheap, but I only wish more of it was listed on the PBS for the Medicare Safety Net. Please remember, these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

On vanity, prejudice and beauty (part 2)

Thank you for the discussion around my first vanity, prejudice and beauty entry. Glad I got you thinking and talking about the issue.

Today's continuation of the topic is around the idea of cures. The desire for a cure often comes from someone without the disability or disfigurement.

There is an attitude that surgery is a quick and necessary fix for disabilities and disfigurements. I've had people tell me they couldn't possibly look like me, and would definitely have surgery if they did. Often surgery is not an option (or wanted) by the person with the disability or disfigurement. And the quick fix of surgery won't help change peoples' attitudes and prejudices. I actually regard this attitude as vanity.

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Britain has a wonderful initiative called Changing Faces Campaign. Its website states:

“It’s not just about surgery.”

Changing Faces is the leading UK charity that supports and represents people who have disfigurements to the face, hand or body from any cause.

We live in a culture where disfigurement is often seen as a medical “problem” that could/should be fixed by surgery or medical intervention. However, surgery alone cannot always remove a disfigurement and can sometimes lead to further complications. Changing Faces helps people to face the challenges of living with a disfigurement and equips them with the appropriate tools to build self-confidence and self-esteem.

The psychological effects of disfigurement whether acquired from birth, an accident, disease or the aftermath of surgery can last a lifetime if not dealt with early on.

Our work involves:
1. Providing support for children, young people, adults and their families through our counselling services to help with the psychological and social aspects of disfigurement.
2. Working with schools & employers to ensure a culture of inclusion, and with health and social care professionals to provide better psychological care for people with disfigurements.
3. Campaigning for better policies and practices that are inclusive of people with disfigurements and for social change by working with the media, government and opinion leaders.

The Changing Faces Campaign is so important in creating awareness. We've got to start talking more about reducing prejudice against appearance, and value diversity, and know that beauty isn't just  a perfect image.

I wrote and starred in a number of sketches for No Limits. They are all based on true situations that have happened to me. I am pretty proud of them. These two are about cures.


That first one is in reference to the faith 'healers' that have approached me, insisting they can cure me. Not having a bar of it. So many of them have told me how unfortunate it is that I look this way. Unfortunate for them, because it makes them uncomfortable? Or unfortunate for me because this illness can be really difficult?


And that second one is more about the expectation by others that we should conform to looking 'normal'. Yes, that really happened to me, in a lift at work, and yes, I was gobsmacked!!

I have noticed that some people get so uncomfortable when they notice me, and their own insecurities show. Lots of people see me and then quickly look away, or just blurt out blunders like in those sketches.

Personally, I don't want a cure. While being without ichthyosis would be more convenient, the side effects are too high. I can't speak for others with disabilities and disfigurements, but through discussions on the cures episode of No Limits, there were questions whether cures will leave us better off, and the judgement that our disabilities are a deficit.

I think the idea and desire for perfection - media, magazines, airbrushing, the cosmetic (surgery and makeup) industry - can make it very easy for people to judge those with disabilities and disfigurements. Media,  magazines, airbrushing, the cosmetic industry are all quick fixes to a perfect image. And so people think there should be a quick fix - cure or operation - for those who they regard as looking less perfect than the ideal.

I really hope you continue discussing this issue. I am so passionate about this - please spread the word! And stay tuned for the final part of this series. Thanks for reading!

On vanity, prejudice and beauty (part 1)

A friend recently asked me why I take so much pride in what I wear and love fashion so much when I dislike me and others being judged on appearances An interesting question.

As I wrote on DiVine, and then Mamamia, my dad once told me that I should always take pride in myself. He said I should always present myself in the best way possible. I should be well dressed and groomed. Walk with good posture. Always smile. Be a nice person. He told me this because he believed it would help people look past my confronting chronic illness.

I love fashion as much as the next girl. And I enjoy being photographed - you can probably tell from the amount of photos I post of myself here. I don't follow trends religiously, and know I'm not supercool, but I love flicking through fashion magazines and blogs, and shopping is my religion. Sometimes I plan my outfits like someone would plan an important project - I probably devote far too much time on thinking about clothes. But dressing well makes me feel good, and I also receive lots of compliments. And what woman doesn't want that? A pretty dress can take my mind off my scaly scalp. And wearing a nice outfit after a week of hanging in my trackies while off work sick is a great pick me up. And dressing well also makes me feel like others are looking past my redness - and seeing me for my personality, interests and creativity.

I don't think my interest in fashion and yearning to dress well is vanity. I hate that trait. To me, vanity is ugly.

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I hate the homogenisation of image, and the need to look perfect at all times - just like the models in magazines. People look the same - and fear difference. They associate bad looks with failure. But I think individuality is beautiful. Why would you want to look like everyone else?

When people start talking about how ugly they look in person or photos, or talk about their bad hair-day or minute pimple, I tune out. Boring. Superficiality is boring. As I wrote the other day, I hate the fishing for compliments when they post 'bad' pictures of themselves online. I regard it as self obsessed, insecure and disrespectful to greater issues. It's like they think their looks are the only thing they have going for them. Well, in some cases, it may well be...

Get this - I was once told that I wouldn't know what it's like to be teased because I'm beautiful. Because this woman was teased because she was beautiful. I know. Difficult times. Because it's not like I know what it's like to be teased because of my appearance. (And as karma would have it, the person who said this to me is in an extremely bad place now, a place I wouldn't wish on anyone.)

Call me harsh, but in all honesty I can't fathom the comparisons 'beautiful people' make between the ridicule they receive compared to the insults people with disabilities and disfigurements receive. It may be naive or small minded, or perhaps judgemental of me, but I don't get these comparisons. I don't get the desire to change image 'for the better' through surgery or cosmetic treatments. And perhaps by my commentary here, I am being judgemental towards those genetically blessed people.

I recently saw a video of the UK TV documentary/reality TV show Beauty and the Beast - The Ugly Face of Prejudice. While I completely disagree with the term 'beast' used about someone's appearance, I agree with the premise of the show, and need 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 changing peoples' perceptions and value of appearance.

Beauty and the Beast 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.

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Hosted by Adam Pearson, the show deals with the invisibility felt by people with disabilities or disfigurements, and discrimination experienced - surprisingly by both the pair. Discrimination due to image is just as difficult as discrimination due to inaccessibility. One of the most important statements in the show is "Imagine if I'd been turned away because I was black, or I simply just wasn't good looking enough? Where do you draw the line on discrimination by looks?"

There are no YouTube videos of the show that can be embedded on my blog, but you can watch the videos from here. I really felt moved by this video - the interaction between Leo and Yasmin.

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But there is a good vlog providing a commentary of Beauty and the Best that I want to share:

Great thoughts, Mike. And I can hear Savage Garden in the background!

While I haven't been obviously directly discriminated on due to my appearance, I'm sure it's happened. Maybe I didn't get a job because there was a perception I'd be too much of a liability. I have certainly been told that it's great I'm out in public and not locked away somewhere.

And of course, there's the staring and comments. Sometimes I position myself facing away from people - particularly kids - at cafes, just to avoid being stared and pointed at in public.

I often tire of peoples' vanity. I once told someone who didn't want a photo taken of themselves due to a bad hair day that "if I can be ok with my appearance after being called ugly by a group of five dwarfs in public, then you can be ok with yours".

Yep, I'm always telling it as it is. Hopefully to make people realise that looking good isn't everything.

There's more of this that I want to cover - but I've written heaps here, so look out for future blog entries continuing the topic.

I am so passionate about this topic - please spread the word!