5.01.2017

How to be a hypocrite: MS edition

The morning after a wild night out, I did what any proper party girl would, and sifted through the 4 million photos and selfies I’d taken the night before, deleting any that were blurry, where my hair looked weird, or where my lazy left eye made me look just a little too drunk. I am not a photo-realist. Then, I updated my social media with the most perfect pics of my glam and exciting life, all before brushing my teeth. 

The Banker and I had been to a gala event in the city with about 1900 of Toronto’s coolest and most cultured, art-gallery types. The requested attire was Steampunk, which I nailed, thanks to a crazy hat from my mom’s vintage collection. I knew I looked good and so did everyone else. I got loads of compliments from the beautiful people of the 6ix, of which, for that night, I was one.  

I know this for a fact because I was even paparazzi’d. I was delighted when a media photographer asked if he could shoot me, claiming the hat had caught his eye. This old thing? I immediately obliged, grabbing my cane and striking my sassiest pose after unceremoniously pushing Optimus Prime, my convertible rollator, off to the side and out of sight.

Wait, what?


Under a disco ball and the influence of more than one cucumber martini, for the sake of the photo, I pretended not to know, or need, my rollator. I didn’t think twice about my epic diss to Optimus until the next morning as I reflected back on the evening’s festivities. It went like this: happy memory, happy memory, uh-oh memory. You know, the one that shows up once you’ve sobered up and start scrolling through your mental inventory of the events of the previous night, scanning for shame? Who did you drunk text? Who did you wake up next to? Who did you offend?

Turns out I offended a robot, but that robot has a name and it’s Optimus Prime. We have a complicated relationship and maybe he’s kinda part of me and so maybe I kinda offended myself. 

WTF are you talking about? Are you still drunk?

Maybe.

Last year I wrote this piece in xojane about beauty and disability. I talked about how, as a society, we have trouble accepting that disability can be normal, and even beautiful, because we don’t ever see it represented that way in media and that has a powerful effect on what we collectively believe. Now, a year later, I had an opportunity to be represented in this very context, in a hip publication - to do the very thing I’ve been rallying for - and I totally fucking blew it.

Let’s be real. I’ve been shoving my rollator out of pictures since he arrived on my doorstep, and before that I was ditching my cane for pics that were private, never intended for a magazine or even a blog. In documenting my own life, I’m not trying to re-write history or deny my experience. We all struggle with how we look to the world. Selfies help us influence how we are perceived by others, but what about how we perceive ourselves?  

I don’t like what I imagine others will think when they see an image of me with a mobility aid. If a picture is worth 1000 words, it feels like almost all of them are negative when it comes to looking at disability. I’ve been brainwashed like everybody else into interpreting mobility aids as symbols of my own brokenness. 

But what if they are symbols of perseverance? Of resilience? Can’t I wear that proudly? 

Can’t I just get over myself?   

I want to contribute to the message that disability can be beautiful, I really do - for society’s sake but also for my own. I’d like to be someone who doesn’t have MS, who doesn’t need mobility aids. But I am. I know the best version of myself doesn’t hide this, but handles it with grace. I know this and yet, I can’t promise I won’t do it again. 


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14 comments :

  1. I find myself doing the same thing. I was looking over some pics from last year and saw one from the MS Mud Run where I hobbled up the hill to get a photo with my team at the finish line. It's a great shot of all of us, but if you look at the ground, you'll see my cane lying in the mud (poor guy). Funny that I threw it down at an event that was all about MS. Yet I still had the instinct to "hide" the fact that I use it. Didn't even think about it, just threw it down and posed for the picture.

    BTW, I just got my rollz (he's the same as OP, even in "cool grey") in preparation for my trip to Europe in July. We're still getting used to each other - he mostly sits in my room, waiting for me to take him on a stroll for now, but we'll get there...

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    1. Here is the photo https://twitter.com/jcgillis/status/798196211559763969 notice my cane in the lower right next to my photobombing daughter.

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    2. I'm so surprised at all the people I've heard from who hide their canes and rollators in pics. I don't know why I thought it was just me!
      Optimus was a game changer for me in Europe last year. We did more on that trip then we have in the last ten years of traveling. Oh, and we got into so many places for free! (Europe is cool like that) I hope you come up with a good name for your Rollz before your trip. It might help you bond.

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  2. Ardra, all your posts are so sharp, so well written, so touching, so close to what I go through with MS, you are the only one who writes about MS that make me feel good. I salute your intellectual honesty, that is in every post you write but it striked me particularly in this last one. Oh, and well, I confess, I shed a few tears. Best regards to you and to Optimus Prime.

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    1. Hi Marie,
      Thank you so much for these lovely words. It means a lot to me that others can relate to what can otherwise feel like a fairly lonely experience.

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  3. I look forward to seeing your beautiful self accompanied by Optimus Prime in a glitzy fashion rag. Great blog.

    JE

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  4. Love, love, your quick witted, sharp tongued, amazingly funny & beautiful you! Your reads never disappoint & always give me something good!��

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  5. Ardra - you are so not alone here. I've deleted photos I don't 'approve' of and have often been what
    seems to amount to outright shock at seeing a picture of me and my walker amidst a group of smiling, happy, fully functional people - I struggle to recognize THAT person and my response is never a good one. A judgement I would NEVER have if it had been a stranger - or a loved one! Amazing what we do to ourselves.
    Apparently these changes of 'ability' hit hard; even though like you - the walker has given me huge benefits, to shop, to drive by myself etc.
    Your posts are powerhouses of realism.

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    1. Thanks Barbara. You're so right about not judging others like this. In fact, quite the opposite. I feel so grateful when I see someone rocking this look.

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  6. It's only natural to want to appear perfect, or close to. Yet you really seem to dote on the affects MS has had on your appearance. You know, with this disease knocking you about, getting yourself out there, with your beautiful walker and your natural beauty is enough. The act itself is beautiful, let alone your appearance, which I am sure was lovely. Cut yourself some slack. Relax

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  7. Hi Adra! You have a stunning writing style and it awesome to see someone write about ms without having to include recipes, pictures of kittens some religious texts and a cure. I totally emphasise with what you said about your rollz and going into a wheelchair I read Xojane sometimes (JUST for the articles..) and sometimes msconnection too. Cheers! Tony

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    1. Hi Tony,

      Thanks for reaching out! Yes, kittens definitely suck.

      So glad you found me.
      A.

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