16 March 2011

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.

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!


  1. "While being without ichthyosis would be more convenient, the side effects are too high." This quote resonated with me, because I have heard so many patients say the same thing not about ichthyosis per say but about illness/disease.

    I've really enjoyed reading these 2 entries Carly it's great to hear it from your perspective. I've had such a good response to my blog entry about Japan and a soldier's story of World War II. It just gos to show how important it is to use words, and have people hear your story - one learns! :) :) :)

  2. I think surgery for deformities/disfigurements can be amazing. I had an incredible, huge team of doctors around me the entire time I grew up until I was about 18 years old when it was reduced to just two specialists. They didn't tell me to have the surgery because it was necessary or that it would solve all of my problems. Sure, it made things easier for me medically (to eat, talk for long periods, etc) when they moved my jaw forward because it was essentially non-existent, but I could've gone through life with my original jaw and face if I wanted. But I didn't want to and I asked the doctors to do it even earlier than they wanted to. I didn't have the self-confidence Carly may have had as a teenager after getting teased by guys up to four years my senior numerous times a day at school and the surgery helped me a lot to become comfortable in who I am. I look far from "normal" now and still get stared at and such on a daily basis, but my doctors and parents were fantastic and prepared me for the surgery to not be a "perfect cure" for all my life's problems. But these things I can cope with now and I can look in the mirror on my good days and think I look good. I could never, ever do that before.

    Of course, I had three cleft palate repairs which is also considered plastic surgery. But somehow this is deemed okay by people because they think it's necessary. Technically it's not. My parents could've chosen for me to be fed through a tube my whole life. But those repairs, again, helped me to be able to do things everyone else took for granted - eat, swallow, suck. Same with my ear canal reconstructions, also called "unnecessary cosmetic surgery". I could've just had bone-conduction hearing aids (worn as a big headband around my head or implanted inside my skull) but I wanted to get those operations done, despite them not being deemed necessary. They improved my hearing significantly. Again, this is thought of as okay while my face surgery is not by a lot of people. All of these operations were mine and my parents' choice and none of them were medically necessary to save my life (although my face surgery probably did save my life). Yet there is a judgement on my face and jaw surgery that is never on my other operations. What's the difference? Eating 'normally' and better hearing is more important than my non-existent self-esteem?

    Just my thoughts. Great entry, especially about Changing Faces because what they do is such an incredible inspiration to me.

  3. The second video is really powerful:)

    Have a great day.

  4. Sometimes I don't think people realise that having surgery can't always make you "normal" anyway. After 12 operations I look more "normal" than I did before. I can also eat more comfortably, breathe more comfortably, and no longer have pain in my jaw. If I want, I can have more surgery to keep trying to look more "normal", with a very small chance of success. But really, I'm happy with my appearance, and my body now does everything it was meant to do with relative ease. I don't need anymore fixing, and I certainly don't want it. :)

  5. Hi Carly,
    I can relate to video 2a similar experience happened to me at a supermarket where the woman behind me commented on my and said I must have done something severe to my back to be the way that I am, gobsmacked I remained slient. I have a condition called Fibro dysplasia ossificans progressiva or fop for short, basically my body is growing another skeleton it's something I'm born with but I don't think I will get used to the stares received from some people.
    Love your work Carly, keep it up

  6. Glad the videos came out well :)

    This is such an interesting topic. There is a fine line between vanity, using what is commonly perceived as "attractive" to achieve practical goals and simply being healthy.

    A lot of conditions affecting physical appearance also cause pain or fatigue or a number of other inconvenient health problems, and while I wouldn't want physical appearance to be the first priority of any doctor, a cure for the underlying health problem wouldn't always be a bad thing.

    That said, if you had a cure that would fix health problems, but changing your appearance was optional, which option would you take?

    Would it be worth looking "normal" to end all the ignorant comments and harassment?

    Is "normal" boring? Standing out can work to your advantage. People compete to be remembered by employers or social groups all the time and a unique appearance can help with that.

    I think the way people work so hard to fit the "perfect appearance" model is quite disturbing. It's as though they're all trying very hard to stand out in the same way as everyone else! It's human instinct I think; the need to conform, to belong belong to the homogenous group, and I think that's why a lot people struggle to understand that a different appearance doesn't have to be a bad thing.

    Then again, there is no denying that the world is nicer to "attractive" people. Fitting the mold can certainly make life easier; getting served first at the bar, people being more likely to help you up if you trip in the street, etc ...

    Regardless of all that though, the work of Changing Faces appears to be on a fantastic track. You can't go wrong with building self esteem and promoting inclusion!

  7. Such a great post, thankyou, I'm really enjoying the discussion being generated around this post series. The Changing Faces campaign sounds terrific and very necessary... the experiences you so candidly write about (like the one in that second sketch) show there is much "schooling" of the public that needs to be done. And empowering kids with self esteem first...SO important!

    The cures discussion is a very interesting one indeed, one I’ve been thinking about a lot lately. Is it vanity for someone with a disfigurement to undergo surgery? I guess the answer to that all comes down to MOTIVATION. I think everyone with a disability or disfigurement who would like to change that part of themselves (and I am in that category) should contemplate first WHY they want to change their appearance and/or ability: for physical comfort(my reason), or to alter the way OTHERS respond to us and relieve them of the "burden" of our difference?

    Only the individual can answer that question, I guess.

    And Re: “normal” beauty ideals… I stopped buying certain glossy mags(i.e. catalogues you PAY for) long ago because of the inherent lookism/ablism and sometimes racism within these kind of publications. I found I could not relate to the images and just didn't want to buy into the value system and ideals of what "beauty" supposedly is, that these kinds of publications, by their nature, promote. Today I choose to support publications and businesses that aren't afraid to show and celebrate a bit of diversity. It's a great way to empower oneself against the relentless onslaught of "beauty" ideals that wash over us in advertisements and via the media everyday.

    Just imagine if all people of conscience chose to do the same... if we used our collective consumer power to say "actually, there are MANY kinds of beautiful", and rewarded those in the media and in business that celebrated that? Now that would be great...

  8. This hit me girl "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."

    Please don't let those people bring you down, just try to remember, we all looks the same on the eyes of God. No one is beautiful or ugly because he made us just like him. But you can seek the help of Plastic surgeon Los Angeles. This is the only place where I got my very first surgery and actually they really made a good job.

  9. Very interesting post. Thought provoking. Thoughts which I am struggling to articulate. I really think more should be done in schools to promote tolerance - clearly, look at all the bullying issue. But I doubt that many schools would touch upon THIS sort of tolerance and prejudice.
    I feel funny saying "tolerance" - I don't mean tolerance of how people who deviate from the norm look, just tolerance in general. Acceptance and love and AWARENESS that there is more than the norm out there. And that uniqueness is what makes people beautiful.
    I do feel a change in how people are trying to learn to deviate away from the "thin ideal", and being aware that magazines alter images and promoting body love at all shapes (although there is still a long way to go!). But not much is being done to promote love for other kinds of appearances, besides body shape. But, your work helps to show people this. It is so necessary. You're really making a difference. We need more people like you in the world.
    Heidi xo

  10. I work with special needs kids and it astounds me that even amongst them the most popular kids are the ones that look the most 'normal'.

    Anything considered out of the ordinary is not dealt with well. I'm 5'7 in flats which means I'm a giant in heels and I've been called 'ridiculous' and asked 'how is that supposed to make your boyfriend feel?'. Or else people just stare and say 'You're so tall!'. Yeah thanks Captain Obvious.

    It's utterly ridiculous those two scenarios. Particularly the 'I couldn't look like you' one. I'd rather look like you than think like her. How are people taught to be so rude?

    There are so many reasons for people with disabilities to not have surgery - side effects, costs, recovery times.

    It's insulting. I also think it's always okay to ask people about their disabilites and not be embarrassed. The more people understand about differently abled people, the less stupid comments they are likely to get from idiots.

    Go on and do your good thing.



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