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.
(source)Britain has a wonderful initiative called Changing Faces Campaign. Its website states:
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.
“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.
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!