Words by Julie - Living Life With Paralysis

Uncomfortable Conversations 3

I do not intend for this to be a book, but it may end up book-length. Please, do your best to stay with me, and make it to the end, and then share the shit out of it. It is also not my intention to “publicly shame” the parties involved, which is why I do not name the location or the hotel. I had excellent customer service – my complaint is with the process (and obviously the end result) not the people. They are cogs in a machine that is mightier than us all.

I have just come home from a two-day conference at the University of Guelph. It was the Open-Ed Accessibility Conference and I left with a much greater appreciation and understanding of the efforts and technology that go into making digital communication accessible. Not that I didn’t appreciate it before attending, I just “get it” now. I was there representing the Rick Hansen Foundation as an Ambassador of the RHFAC (Rick Hansen Foundation Accessibility Certification) Program.

Because the conference was over two days, and all the way in Guelph, I decided to stay overnight. What do you do when you need overnight accommodations away from home? You stay at a friend or relative’s home, right? Maybe an Airbnb? Now what if you can’t get in through the door of either of those options?? You check into a hotel, which is what I did.

Accessibility is a crapshoot. You never know what you are going to get until you get there. You always have to have a back-up plan and there is a minimum standard that is different for everyone. I know people who use a wheelchair but don’t need grab bars to get on or off the toilet. (I also know a guy with quadriplegia who has ridden roller coasters with his hands taped to the holy-shit bar so he didn’t fly out of the seat). I, however, need a grab bar. Just one will do, and it has to be in a location that can be reached from a seated position. That is my minimum – because I could get on the toilet – but not off and back into my wheelchair.

I can go without showering (because it’s a tub with no seat or a seat too far to reach the controls). I can go without seeing in the mirror (because it’s mounted too high). I can roll on thickly under padded carpet and I can push my way through heavy doors. I can squeeze my chair between two queen size beds (and back up the same way).

Last night in Guelph I had a new experience – turning off the lights with the switch at the door and getting to bed with my phone flashlight. Really? (I can hear you saying it.) Yup, I know, how can that be when there are always lights beside the bed? Well when all those lights are on a three-way switch which also controls the pot lights in the ceiling and those can only be turned off with a main switch, you have to be able to reach it. I needed a 5-ft reaching stick to get the switch located on the wall beside the bed. I don’t own a 5-ft reaching stick. And, as I was travelling alone, I had no one to shut off the overhead lights for me. So I made do. In the dark.

The switch is on the wall under the framed art. The path between the wall and the bed is too narrow for my chair so I have to get into bed on the other side.

I knew I was going to a 10-year old hotel, pre-2015 Ontario Building Code updates, so I cut them some slack. But I really just wanted to lay in bed, read my book and then turn out the light. Nope. Sure I could have laid in bed, read, then gotten back up into my chair, rolled over the thick carpet back to the door, turned out the light and then rolled in the dark back to bed. Or I could have rolled my body over the bed (likely three log rolls) put my feet on the floor and reached to the switch on the wall. I chose not to. Those kind of frivolous energy tokens are not available at the end of a day, especially a conference kind of day.

Would you be able to reach? The shower controls are too far away to be operated from the shower bench – you would have to activate the controls and then put the spraying shower head…somewhere?

The bathroom setup in Guelph was not great (no shower this morning – couldn’t reach the controls from the shower bench – see photo) but I could get myself off the toilet (even though angled grab bars are not safe and are not helpful to anyone) – I have learned and gotten strong enough to make it work. I do travel with a portable grab bar (with super strength suction cups) but it only works if it is a smooth, painted finish. All hotel bathrooms seem to have textured wallpaper, therefore the suction does not work.

This grab bar, although on an angle, is at a height that makes it sort of useable.

The Guelph hotel staff even did their best to help make things better by cutting blocks of wood to put under the legs of the desk so I could get my knees under it. When I checked out the next day and explained the issues I had had, the front desk staff was very gracious, took notes and gave me extra “points”. They also said that no one had ever given them this kind of feedback, about accessibility in the hotel, not in 10 years. Really??

Blocks of wood under table legs. Easy fix.

I managed in Guelph. No harm, no foul. So what’s this rant all about, anyway?

This was just night one.

My second night was to be in another city where I had planned meetings and was attending an appointment to help out someone I love. The city and hotel will remain nameless, because as it stands, I received excellent customer service and they did all they could to try to make it right. They have also promised to investigate and make changes. I will also follow up to make sure that something happens. Here are some pictures and and an explanation of what was so wrong that I decided that I could not stay the night.

Base of the grab bar is located 90 cm off the floor. Toilet roll is totally in the way anyway. Rear grab bar is also way to high. One good thing is the height of the toilet and the type of toilet seat. Napkin disposal is in an okay, but high, location.

I can’t go 24 hrs without using the toilet.

Sure, I have stayed places where I could not use the toilet in the actual hotel room, but there was always a public accessible restroom that I could use (off the lobby or in the restaurant attached to the hotel). But not this one. What’s wrong is the grab bar – height and angle (and the placement of the toilet roll holder in the public restroom) makes it all completely useless. For sure it’s useless to me and likely it’s useless to a lot of other people, too. The base of that bar is 90 cm off the floor. Get out your measuring tape (I travel with one in my backpack at all times) and stand up and see how high 90 cm is.

I am beyond annoyed. Frustration is not even the right word. Confused and sad too. I hear you say “But surely, Julie, you have seen so much that you shouldn’t be surprised?” But yet, I am. Why? Because this hotel was brand new and the code from 2015 should have applied, and even if not, some sort of code should have? You would have to be standing in order to use the grab bar. That’s not logical, is it?

This is a MASSIVE hotel chain, and I’m sure that it was built by a MASSIVE construction company who had architects that should have known better. Someone seriously dropped the ball here and now they are going to have to invest serious coin in making changes to a brand new building. In four years of being open, no one has said anything to that hotel about their bathrooms. Or so I was told.

Please don’t read this and think that Julie just goes to hotels (or anywhere else) so that she can then rant and rave about how inaccessible they are. Because I don’t. I was planning on staying the night and working for hours on my book (about building an accessible home) and getting up the next day, having a breakfast meeting, lunch meeting and going to that appointment. But instead I used up all my free time talking to the manager of the hotel and then driving home (to my wonderfully accessible home) and then writing this blog instead of my book.

Why do I even leave home, I wonder?

Now, I see it as my job. I seem to be the only one talking about it. Which I am sure is not true, but today, that is how I feel.

And I totally get it. I takes a lot of energy, and sacrifice of personal dignity, to sit down with a complete stranger and explain why a bathroom does not meet one’s needs. It is not a comfortable conversation to have (on either side). But uncomfortable conversation or not, it needs to be had. If we don’t, we won’t see change happen. And then we never would leave the house.


  • Ruth Claessens says:

    Brava. Keep having these discussions.

  • Betty Shaw says:

    Thanks Julie for sharing the many frustrations of accessibility and doing something about it. Everyone needs an advocate to address the problems and you are making a difference in the lives of those who can’t speak for themselves.

  • Julia Leary (Nind) says:

    It was nice running into you at the conference, Julie, even if we didn’t have much time to talk. Your experiences sound very frustrating, but I applaud the time and energy you expend trying to make the world a bit better.

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