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Words by Julie - Living Life With Paralysis

x6 3

I took this picture Thursday after I got out of the shower. Why (other than to show you my beautiful shower)? Because I timed how long it takes me to get out of my bathing suit (after swimming in my wonderful pool). How long does it take you to get out of yours? Let’s say, 30 seconds, max? Well it took me three minutes.

What a stunning shower! And it’s about to get better because I just picked up my custom build padded shower bench which will be added to the wall on the left.

How long does it take you to pee? Say a minute and 15 seconds (not including handwashing time – of course)? Me? Five minutes – and that is if I am trying to be quick, wearing stretchy yoga pants and don’t get them caught under the toilet seat. (Happens all the time.) Why do I know this? Because I had an OT at my house last week and she timed how long I was gone for (because I had to excuse myself multiple times during the three hour insurers exam I was being subjected to). My point is coming, be patient, please.

If you pay attention to my FB feed you may know that I am at the Abilities Expo in Toronto at the International Centre. This is the “trade show” that is open to the public, free of charge, where people can come and attend workshops, visit equipment vendors to try cool (read: expensive) things out, learn about new technology and meet people from all the different not-for-profits whose goal is to try to make people’s lives better.

This (these?) is the Keeogo Exoskeleton. The “next generation” of walking assistance.
This is one of those “hunt and find” photos. How many things can you find wrong with this “accessible” washroom?

I’m about to deliver two ironies here.

  1. The hotel where I am staying (Hilton Garden Inn) in the accessible king bed room is where I got trapped on the toilet tonight. Yep. What you can’t see in the photo is the slope of the floor leading to the drain. Too much slope – to the point where there are only three of my wheels touching the floor. So, as I try to lift myself back into my chair (notice also the incorrect grab bar (45 degree angle) that is too far away from the toilet), it slides away about eight inches. And the toilet is TOO LOW. So yes, stuck on the toilet, in the accessible suite.
  2. The International Centre has crappy bathrooms. Pun or not, I’m not sure, but IRONIC? Yes. Tomorrow I am going to hunt down the powers that be and shame them for choosing this building to host their show, or for not MAKING them improve their bathrooms. Now, having said that, they did make larger curtained stalls for people who have caregivers with them, but still – all it would take is taking off old grab bars, installing proper L-bars and D-handles on the inside of the door. Not much. Oh, and lowering the mirrors. Big deal – even one in each washroom would help.

I’m not telling you this because I want to hear “Oh Julie, I’m so sorry that happened” or “Oh that sucks”. I’m telling you because I want it to stop happening and the only way is for you all to learn about it and talk about it EVERYWHERE YOU GO. Yep. EVERYWHERE. If it’s good – say so. If it sucks – tell them. Twice today I gently reminded people that the word “handicapped” is not a word that we use anymore. Once to the guy helping park cars and once to the guy with the MICROPHONE IN HIS HAND and a certain popular news channel (ahemCTV) stitched on his equipment bag (NOT the super supportive Southwestern Ontario CTV guy we all know and love). I guess that is irony number three.

So when you spend the whole day trying to figure out how to pee and get dressed and undressed it’s a wonder anything gets accomplished. I spent six hours at the show today, half (maybe) looking at/talking about equipement. The other half? Talking to people about how to make things better. Education. It’s the only way. And when postsecondary institutions don’t have guest speaker, let alone one course, in a whole program of architecture or construction it’s no wonder it’s not being done right!

How am I supposed to do that when I have to spend 50 minutes of my day just peeing! Could you do your day x6 everyday?

Sorry for all the yelling. I’m blogging out my frustrations. I used to go for a run, now I let my fingers run for me while the tears of frustration run down my cheeks.

P.S. I hear you asking “How did she get off the toilet?” Answer: I called Theo. On the phone. And we problem solved until I did it. On my own. No, he did not drive down here and rescue me. But I was ready for a rescue. And I’d have him rescue me any day. I know. Sappy. But true.

3 comments

  • Barn Hood says:

    Of course you called Theo. Reminded me of something a few years ago.My husband Clare was in Nicaragua one January when our water pipes froze.Of course I phoned him! ..not truly comparable but similar.
    Take good care of yourself Julie.

  • Barb Hood says:

    Of course you called Theo. Reminded me of something a few years ago.My husband Clare was in Nicaragua one January when our water pipes froze.Of course I phoned him! ..not truly comparable but similar.
    Take good care of yourself Julie.

  • Patti says:

    The things that I take for granted with the upmost ease is a nightmare for anyone with accessibility issues. I feel that when hotels advertise accessibility room they should ask the advice of someone with said issues before the construction begins. Julie you are an amazing advocate to insure awareness and to make recommendations and change .💕

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