20 November 2013

On 'normal' and cures and pride.

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 blogging acquaintance 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 I guess? 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.



  1. Well said, Carly. I appreciate your honesty and your sharing. I feel I always come away from reading your blog with a new perspective.

  2. So well written Carly. You should get a national award for your writing! Oh, wait... (Yay again!)

  3. Love it. So well written Carly. You should get a national award for your writing! Oh, wait... (yay again!)

  4. When someone says they don’t see your disability/difference they are denying part of your identity. ‘They're not wanting to associate you with belonging to the other category that they are not comfortable with.’ YES! Also they think disability is just imaging (from a space influenced by stereotypes/fear and assumptions) that they can imagine what it is like to live your identity, in all its complexity, just by thinking ‘if my skin was that itchy, I’d feel like X or if I was in a wheelchair it would be so hard because of X reasons’ and that is where they feel the right to say our lives must not be worth living. I had a guy come up to me in the street once and tell me if he was me he’d go home and kill himself and then walk away. People feel that they have an intuitive knowledge of what it must be like and it must be horrible but what the non-disabled often fail to step back and think about is that these feelings are coming from an ablest culture and is very simplistic. Life and living with difference is very complex. We know things from living in a different body, there is pride here, but pride that comes with practice and an assertion that we are not wrong the way we are. We are living full lives, loving and being loved, just as we are.

    1. yes, exactly, there's a lot that the so called able-bodied don't understand from not living in a disabled/ different body :) sad to think about this sometimes, because they probably never will.

  5. This is a great post Carly. If I understand what you are saying I hope that treatments can be found for your condition that lessen the pain - the focus is not on being 'normal', but on living more comfortably as an individual (who in your case has Ichthyosis, but that neither defines you, nor is something to be wished away). The best way I relate is with our infertility - it was not visible on my face but was such a part of me for so long (still is really, even though I'm passing the fertile years). I did feel branded, even if others couldn't see it. Now we have our two children from China they live with looking different (especially from us, their parents). My daughter is beautiful in every, and any, sense of the word (although Chinese people might have her be 'whiter'). Those looks are skin deep, of greater importance is her innate dance ability, and of even greater importance is her empathy for others, her resilience - and these things I hope and trust that we have instilled in her.

  6. * Applause * love your writing. I am Mum to just-turned Miss18 who has down syndrome. Do a "find and replace" on your article using down syndrome that that's what she gets too. But only sometimes. Right now she is driving me absolutely bonkers with dramatic emotions and why life is unfair, but that's just teenage shite, I wouldn't change her for the world! Actually, what I would like is for the world to change. She does just fine as she is, but the world is pretty harsh sometimes.

  7. Normal can be a very sensitive word. I remember spending an evening with two friends of mine when one of them raised a question addressed to all of us: "What would you do if you were normal?" I immediately said I WAS normal (in spite of my severe form of ichthyosis). It took me a while to realise that I not only killed an innocent topic of sharing our unfulfilled dreams but also hurt feelings of two other guys as both of them were struggling with psychiatric issues. Of course I didn't mean to.
    Thanks for yet another inspiring blog Carly.

  8. The 'dryer setting' brought much needed laughter today, thank you.
    Normal is subjective, it is what we believe ourselves to be, not as we look/act/think in the eyes of the world. Carly, I think that those of us that face this issue are truly living as honest and forthright as any human possibly can. We face discrimination, whether it be brought on by an outright (easily seen) 'abnormality', or an invisible dis-Ability which must be nearly 'proved' to others so they may begin to understand us. In the end, I constantly remind myself during reflection, positive thinking, prayer and introspection, that it is not others that define me (nor is it my shortcomings-- physical or otherwise) for we all see through our own unique filter. The only filter other than my own that I deem worthy is that of the truly caring, loving, non-judgmental, tolerant and open-minded.
    I am always aware that misfortune may befall anyone, at anytime....let us continue to share our positive outlook as examples for others. And sometimes when we are not quite as positive as we 'normally' are, well, that is an example too. After all, we are all just trying to make it everyday, despite our challenges, the same as those who consider themselves as normal as can be.
    You rock!

  9. Of everything you have mentioned above, it is always your pain that worries me most. You know, SM is an amazing tool - I like to think my kids are exposed to so many people with so many differences in their lives to ours (including appearance differences) than they would have been without the internet. We talk often about these things, although they are still pretty sheltered, being bush kids. I do hope their minds (and mine) are 'stretched' enough from 'our normal' to embrace all kinds of people into our lives.

  10. I love the part about the woman who said she'd rather have someone say they see her color and that it is beautiful. What I get a lot is, "Your skin is looking better Gina!" When I was in high school a lot of people thought I was weird. I took it so hard, it really hurt my feelings because all I ever wanted was for people to treat me like I don't have Ichthyosis, to see that there is more to me. Now that I am in my early 20's, it's a mix really. I want people to recognize that Ichthyosis is a part of me that has shaped who I am in a lot of ways, that I am unique. But I still want people to see that there is more to me than my skin. I want them to see not just that my skin is beautiful, but that it has contributed to the parts of me as a human being which I think are beautiful like my ability to have compassion for others or my ability to express myself really well through writing. Personally, I just want to be perceived by others as not just "the girl with Ichthyosis." I want people to see me as other things like, "the girl with the pretty hair" or "the girl with the sense of humor that is awkward but makes everyone laugh." Haha. Sorry if I went kind of off topic, but that's what reading this got me thinking about xD

  11. I love this piece Carly - the girl who writes amazingly well and gets all of us to start to understand.

  12. "Othering" is easy to do and if one isn't used to being "other'ed" their self then it takes a lot of empathy and self-awareness to catch oneself from excluding someone through one's words and actions. Although, as someone who's pretty much a "normal" I can conceptually try to understand what someone whose appearance exists outside of my own cultural norm might feel when they hear "don't you want to look more like other people." I can get that, that would be obnoxious to hear all the time and can become quite oppressive. What I cannot grasp though is people who are against normalizing senses and physical traits. As a hearing person I cannot grasp why a profoundly deaf person would _not_ want to be able to hear. I cannot understand how a person who suffers from chronic pain would _not_ want a treatment that brought relief from constant irritation, pain, etc. -- I'm not trying to pretend to understand your exact situation, quite the opposite. And I do appreciate what I've read on your blog so far. -- Thanks.


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