Sunday, July 28, 2013

Disability Chic

After living on my own for a year and half, and periodically have to call my dad to come rescue me after I fall down, I’ve finally bit the bullet and got a medical alarm installed. I’ve delayed up until now, because there was still a part of me that wasn’t ready to admit I needed one. Even so I was totally confused when both my doctor and the lady who came around to install it, told me very firmly “But you must actually wear it!” Why would I go to the trouble of getting one, if I wasn’t going to wear it? And then I realised what they meant. All the time, not just at home when I’m alone. All the time, out in public.

Wasn’t it bad enough that I’d swapped pretty bracelets for a medic-alert; high heels for crocs; and already had a number of “disability accessories” like Molly Stick and wrist splints? Now I had to add a giant hunk of plastic hanging around my neck as well?

I get why it’s necessary to wear it all the time, and after a moment of feeling sorry for myself I put away my vanity and got over it. I even started coming up with jokes about it, for if anyone asked what it was. But then I wondered if that was the right response.

A few weeks ago, I found myself crying over some posts about crocs made on a public page. I was really annoyed at myself, partly because it was such a shallow thing for me to get upset about, but also because I’m usually pretty good at ignoring silly comments on the internet. I’ve posted before about my reactions to the irrational amount of rage and nastiness directed towards crocs, but this time it was a bit different. The gist of the posts this time: No one will ever find you attractive if you wear crocs; you must have given up on ever having sex; you make other people feel nauseous. It was honestly like having someone take the worst things I’ve ever felt about myself, in my darkest moments, and post them on facebook for me to read.

I didn’t respond to any of the comments on the page, one because people on the internet are crazy, and two because I knew exactly what the response would be. “Geez, it was just a joke!” or “Have a sense of humour.” And if I explained that actually sometimes there are people in my situation, who are allergic to the glue used in shoe production, and/or live with chronic pain and disability, I would get irritated responses that “that’s not what this post is about” and “God, some people have to get offended by everything”.

The thing is, I do have a sense of humour. You have to if you’re in my situation, but I feel like these comments crossed over the line from good-natured teasing to self-esteem destroying. Even when comments don’t cross that line, sometimes I don’t want to have to have sense of humour about how I look. Sometimes I just want to feel like I look “okay” or "nice" even, not “okay, despite...”

When I posted about crocs before, I heard from several women living with chronic pain that they had also been brought to tears by nasty comments made in person about their footwear, or felt shunned by other women in places such as school pick ups because of it. I had a job interview recently and found myself seriously considering which of wearing crocs, or wearing shoes that would make me hobble and want to scratch the entire time, would make a worse first-impression. These comments might be “just a joke” but they have a knock on effect, to people’s self-esteem and to what other people think are appropriate comments and behaviour in real life, not just on the internet.

The day after all this, a complete stranger came up to me and told me she liked my shoes, and I almost dismissed the compliment because I was sure it must be a joke. Then I realised that I have actually had a number of genuine compliments about my shoes in the past. I’ve had people who really dislike crocs comment that bright purple shoes with black tights do look cute, and there were a number of people who said that they wished their feet were small enough for the pink butterfly ones.

The other day, one of my friends commented that she liked my necklace, without knowing it was a medical alarm. So I’m not going to feel bad about having to wear it, and I’m not going to make jokes about it either, because ultimately it feeds into that feeling of having to laugh off: “I would look okay, if it wasn’t for...” The lady who installed the alarm for me told me to make it trendy, and that’s what I’m going to do. If that makes you think no one will ever find me attractive, then for god’s sake keep that to yourself, because that is your issue. Not mine.

Thanks for reading,

Little Miss Autoimmune