Photographer Rick Guidotti with 'appearance activist' Carly Findlay who has a rare genetic condition that makes her skin red. Photo: Simon Schluter
I was born with a rare skin condition called Ichthyosis, which means having scaly red skin. Sometimes people compliment me when my skin looks paler than usual. It's as though I'm five shades closer to a white complexion. (Ichthyosis-less, my South African heritage would probably mean that I'd have pale brown skin.)
What they're not seeing (or feeling) is the pain on other parts of my body and the itching. And while these compliments are well meaning - and who doesn't want to be told they look great? - I can't help wondering whether looking paler is the path to being normal.
Normal. What's that?
It's as though the path to 'normal' is the expected path I should want to take. When people tell me that I'm normal just like everyone else or that I'm doing things that normal people do, they don't understand their good intentions are quite othering. 'Looking past' my face or coming to some sort of epiphany that I'm really quite 'normal' is naive and shallow. It's as though someone thinks they've done a good deed for not lumping me in the other category - the one where people are not 'normal'.
My friend Roni - a proud woman of colour - writes about the phrase "I don't see your colour". She writes: "When you tell me you don’t see my color, you are basically telling me that you don’t see a huge part of who I am and that doesn’t help me. What I want you to say is, 'I see your color. And it’s beautiful'." I identified with her post from a visible difference perspective. By someone saying they don't see colour they're saying they don't see your identity. They're not wanting to associate you with belonging to the other category that they are not comfortable with.
Earlier this year someone I had dinner with asked whether I'd want a cure, even just a treatment, to look more 'normal'. The conversation was uncomfortable; telling of their perceptions of a life lived looking different. They went on to say that by changing my appearance, it would be so much easier for me - fewer questions, comments and stares. I'd be being kinder on myself, they said. Their rationale, while not considering the pain aspect of Ichthyosis, was partly compassionate, and partly because they admitted not being able to cope looking like me. "I'd do myself in", were their exact words to me.
This conversation was full of beliefs and personal insecurities being pushed onto me. My dining partner may as well have been asking "wouldn't it easier to be straight?", or "use a little face whitening cream, it'd be kinder on yourself in this white society?".
Once I picked my jaw up off the floor after realising they'd alluded to the idea that a life like mine isn't worth living, I answered no. I wouldn't take a pill to cure or drastically treat my Ichthyosis. I have written a little about this before - during Ichthyosis Awareness Month and also my rant about pyramid selling - but since that question I have thought about it more deeply.
There's currently no cure for Ichthyosis. There are treatments to lessen the redness, scale, and pain. There have been since I've been alive. Retinoids, topical and oral steroids and infusions are the main ones that my doctors have recommended - treatments that will severely impair the quality of life that I currently have.
I see two sides to a cure: a medical cure and an appearance cure. I don't want either. A medical cure (or treatment, as things stand now) may hold worse side effects than Ichthyosis itself. And I think that an appearance cure is conforming to what society expects of me - the expectation that I would want to look 'normal' and de-identify with a condition that I've become accustomed to and accept. I see it as a bit vain, even.
This isn't to say I don't believe in cures, nor do I think striving for one is a bad thing. I can understand the yearning for a cure, especially if your life has been changed significantly by an acquired disability. You'd want a cure to get your previous life back, to be free of pain, to be ambulant, to live life 'normally'. I have a friend who is undergoing stem cell therapy to one day walk again - the work he puts into his rehab is admirable - and it's working for him.
When I was young, my family and I were in search of a cure. This was tiring - going to various skin specialists and herbal practitioners, the side effects were awful (not being able to go out into the sun, giant pieces of skin peeling off, lots of time off school, fatigue, weight gain, lack of sleep, the prospect of foetal defects...). I also met a number of adults with skin conditions who were also in search of a cure - they were tired too, and their conditions had not improved from the treatments they'd tried. And so of course I wondered why I had to visit another naturopath when these new acquaintances were not cured. In fact, they told me stories of how their skin was a little better, but their lives were impacted significantly, in a negative way.
Living with Ichthyosis has been tough. The pain is the worst. And then people's reactions. Those are two things I could do without. But it's also brought many good people and opportunities into my life, which I am very grateful for. And I'd be weighing up the impact on my capacity to live my life now versus the time spent and side effects of treatments.
Leah Hobson writes about being comfortable with her disability - not wanting to escape it. She mentioned the "faux compliments" people give her, telling her they could almost forget she's disabled. She doesn't want a cure for her blindness either - it has shaped her. There's an idea lurking behind them that everyone with a disability has the need to appear as non-disabled as possible." Leah writes that out of niceness, she's thanked people for their faux compliments. "I've actually thanked people for saying something that made me feel at best unintentionally devalued." She makes no apology for being comfortable of her disability.
Jax Brown also writes about the disempowerment that comes with de-normalising: "I am also routinely disempowered and disabled by a society which views my non-normative body as less than the ideal, the less then the so called normal." But like me she has pride. As Jenny Morris writes in Pride Against Prejudice, physical characteristics of disability or visible difference are seen as "not right and not admirable" and there's an expectation that "we wish to be normal or treated as we were".
But it's OK not to want a cure. And it's OK to be proud of having a visible difference or disability. This is who I am and this is what it is. It's not a life worth doing in, or a face to look past. I'm proud. This is my normal.
Carly Findlay is a Melbourne based writer, speaker and appearance activist. She blogs at carlyfindlay.blogspot.com