Definition in Opposition

There was another thing that struck me in the New York Times’ Patient Voices feature. What struck me was George’s story, in particular the part where he talks about practicing doing certain things over and over again in order to "appear normal". It struck another of those tender places, because what do you do when you can't? How do you get a positive sense of body image when nothing about you is normal?

Last time I looked close to what constitutes normal I was probably around 11 - there were some signs of the RA, mostly in my hands, but I could pass. Since then, in the other 36 years of my life, I've been Different. And no matter what the people who love me say, women with disabilities are most definitely not considered beautiful. When I interviewed Louisa Summerfield and asked about the models on her website, she said "[s]ome people have written to me complaining that I don't have genuine disabled girls because all of them look so hot, they are shocked when I tell them all are in a chair except for the lingerie model." I did not have time then to ask why not the lingerie model, but will skip over that today, because the point is that women with disabilities cannot be hot.

I've written before about that knife’s edge of objectification and how, as a woman with a disability, it can feel quite nice to be ogled for a change. Because although men who have disabilities may be allowed the idea of being attractive and even sexual, women are not. I was a teenage girl in a wheelchair without role models of sexual identity and positive body image, I was a young adult and then a somewhat older adult woman and still, the only women I saw using wheelchairs were in disease-of-the-week movies (where they usually died bravely), in the odd commercial for home care and none of that felt anything like me.

I used to say I was a brain in a jar, because my brain, my personality was all anyone ever wanted. I used to hate my body because it was Different, because the world around me never showed women like me, except as a tragic plot point and when you cannot “appear normal” and when the world defines beauty as everything that isn’t you, what does that do to your ability to see yourself in a positive light?

Every now and again, the media up here talks about the lack of an identifiable Canadian identity, how we tend to identify ourselves as Not-American (I’m pretty sure that’s not altogether true). The same can be said for women with disabilities, who must find a way to identify themselves while existing in opposition to the norm, largely invisible, entirely asexual and definitely never beautiful. I can't remember the last time I saw a positive image of an attractive disabled woman in any form or media, except for Louisa Summerfield's website. We are, in the brilliant words of Holly Norris, photographer of Jes Sachse in the American Able exhibit, "invisibilized" and denied the right to sexuality, to such a point that a disabled woman posing in photos that would be considered sexy had the model been ablebodied and conformed to the mainstream idea of beauty. Instead, people have talked about their "shock value".

I used to hate my body. For its lack of everything that means something in this world of ours - ability, dexterity, strength, sexiness, grace, symmetry. And because it had never been, could never be Same, would always be Different, I shut it out, ignored it, pretended it wasn't there, identified myself solely by my personality and intelligence, became the brain in a jar.

Last week, some of you told me I am beautiful. It was really good for my ego and wonderful to hear and here's the thing… I know. Not every day - I bet even Angelina Jolie has low self-esteem days - but yes, I know. Which is pretty much the single most un-Danish and un-Canadian thing I've ever said and I'm more than a little surprised that the universe didn't just implode with a giant thwump.

Before I could see myself as someone who could be beautiful, I had to get old enough to realize that wrinkles, stretch marks and emotional strength are what make you beautiful and I had to almost lose everything, be razed down to the ground before I figured it out. Life experiences, being there, getting through is what matters, not flawless skin, a flat stomach or the ability to move gracefully. That it is what is different - even Different - that brings true beauty and perhaps it is embracing it, rather than seeing it as not-something that can finally bring peace, acceptance and maybe, as a bonus, mess around with the accepted norm of what constitutes beauty.

Last week, Laurie posted about her search for a swimsuit and how it brought her up against the struggle to accept her body the way it is after her mastectomy. She doesn't like wearing a prosthesis and I can only begin to imagine the courage it takes to go about the world without one. Or posting a picture of yourself in your new swimsuit on the Internet. But I think she is beautiful, because her body shows signs of having been through hell and living anyway. In posting about her Differentness, she's finding a way to define herself not in opposition to the norm, but as herself, living anyway and doing so in joy.

Like Laurie, I’ve struggled – still am, whenever I’m not gazing at my incredible beauty in the mirror, y’know – with finding a solid sense of myself uninformed by the norms and stereotypes around me. And I’m getting there. In these past five years, I have come to see my scars, the marks of RA on my joints as badges of honour, signs that I have lived through something hard, proof that I kept going. I look at my body and I see the imperfections, the Different, but now I see a body that works so hard supporting me to live, to grow, to feel, a body that shows up, gets through and allows me to live the life I love so much. And because of this, I'm grateful to my body and that gratitude has helped me shatter the jar, integrate my brain and my body as one and finally see myself as beautiful. Not despite my physical differences, but because of them.

And because of women like Laurie and Jes, maybe someday, girls and women who are different will feel beautiful from the get-go.