Nothing Without Us . . . For a Reason

(Re-)Learning that my perception of accessibility isn't everyone's. But especially not able-bodied people.

Image description: The corner of a beige wall, with two signs posted vertically, one on top of the other. The top is copper-colored, and says in black type, "Staff will relocate furniture upon request EXT 5321". Under it is a smaller gold rectangle sign that says, "Automatic drapery control switch" above two cream-colored light switches.

I am a week late, but summer and July and whatever. In light of that, I might even be early! In any case, here I am. I’m having a weird moment because my disability appears to be progressing, which is unspeakably irritating and a little bit scary. I am starting new physio after we get back from the beach next weekend, and I am hiring care nurses for the first time for when Michael starts teaching in September, and I am trying to move forward. Mostly I don’t want to exhaust Super Spouse’s ability to show up when I need him most, and also I need to practice for next summer, when Michael will be traveling for a week and I will be staying here. If July was any indication, I won’t be able to stay alone safely, and so . . . (I mean, I could stay alone, but I think I would end up starving and dehydrated, lying helpless on the floor in my own filth for a week. And that feels far too 19th-century-asylum-horror-DOJ-Olmstead-memo, and anyway, we all know that I have no capacity for discomfort.)

But enough of that.

We went to Toronto last week, for the week, and it was great. We’d been there in January and it was such a good time. Going back, it was . . . interesting.

I'm Sorry This Is Late

I mean, Toronto is fantastic. The temperature isn’t terribly hot—I can manage it. The art museum is very cool, and we discovered a second favorite restaurant, Alder, and went back to my very favorite restaurant, Lucie. But I was having weird accessibility experiences all week, and in complaining about it to my mother, I realized that it’s all illustrative of “Nothing About Us Without Us.”

For those playing catch-up, that phrase is a key element of the disability-justice movement, and being in Toronto last week reminded me of why. The phrase is pretty self-explanatory: Don’t do shit for us before checking with us, because you might do it wrong, or do an unnecessary thing, or whatever. Basically, please do be helpful but also maybe ask us what we need and include us in the plans you make for us.

One of my pet peeves is heavy doors. Usually the doors into public bathrooms. This is pretty typical all around the world. For my more able-bodied readers, imagine this: If you have to tug it open or push it hard—as someone who stands upright, with all the leverage and strength that affords (and which probably you take for granted, I know I did)—think how much harder it must be to do this from the seated position, where you have to lean over and then move the chair out of the way, all with (likely) diminished strength to begin with. It sucks. But it’s generally easy to deal with; people like to hold the door for you, and usually that’s enough and you don’t also need them to help wheel you inside. (THAT happens with the all-too-familiar heavy door plus tight angle to get in. Also fun.)

So lots of heavy bathroom doors around Toronto. Okay, whatever, it’s annoying. Our accessible room had a very cool push-button on both the inside and outside of the room, with its own key-reader, which meant I could get in and out of our room super-easily, alone. And the shower was roll-in, though we did have to move rooms initially because the first allegedly accessible shower was a bathtub, and there was no conceivable way to use it as a disabled person. (For more on what makes a bathtub a usable feature for folks in wheelchairs, check out Wheelchair Travel’s great piece about his unfortunate, shower-free experience in his honeymoon suite[!!] in St. Louis.) And the wall-mounted shampoo and conditioner were reachable from the shower seat, which is not always the case. So overall the room was fine.

Less cool? The hotel fire alarm went off TWICE over two days, and was awful and loud. More awful, though? The announcements that interrupted the alarm, which all said the same thing: “The system has detected what may be a fire. The elevators have been shut off. Please await further instruction.” As a wheelchair-user on the sixth floor, I couldn’t help but wonder if the further instruction would be that the firefighters would come get any disabled people first and carry us to safety. I suspect not. It would be cool if they included a sentence, though, about what disabled people should do. Even if it’s just, Close your eyes and think of England.

Image description: A brown cartoon dog with black ears and a fedora, sitting at a kitchen table while the room around him is in flames. He has a speech-bubble saying, "This is fine."

I was a bit baffled, too, by the accessible bathroom in the lobby, which admittedly was a disability stall inside of a larger bathroom, but STILL. I usually do okay with disability stalls, and some are downright fantastic. (I’m thinking of you, second rest-stop on the Merritt Parkway southbound from Connecticut.) But this one had only one grab bar, and it was horizontal behind the toilet. I mean, what? I can’t even think of the disabled person for whom this one bar might be useful. Maybe a grown (tall) man who can stand while peeing but has an unfortunate habit of tipping forward and so needs to brace against the back wall? (And if you exist, Tall Tippy Guy, I can recommend a toilet or two for you in Canada.) It was useless for me, as someone who uses grab bars to help push myself up to standing, or to guide myself from standing onto the toilet. Obviously this was a non-starter since I am not an acrobat, and frankly, if I could stand while bending backward and not holding onto anything else, I probably wouldn’t be all that disabled, now would I? I meant to take a picture but the door was too heavy for me to get back in. Sorry.

A single grab bar behind the toilet is not ADA-compliant, but of course Toronto is not bound by the ADA. And there are people out there for whom “behind the toilet” is a necessary thing in conjunction with another bar somewhere. I am not one of them, but again, this is why it’s so important to talk to disabled people about design, because we are different, and you really should try to hit the lowest common denominator for all of us, which is, I think, at least two bars.

Of course, where those bars are is another whole thing, and something I ran into a few times. Toronto seems to be really fond of the diagonal grab-bar close to the toilet, as opposed to horizontal next to it. This means that the bar starts at toilet height and slants upwards at a 45-degree angle. This isn’t ideal for me, since I use the bars to push myself up to standing in order to transfer onto my chair, and I do it that way because I still have a bit of residual strength in my legs and can bear weight on them. But if you can’t? I’m not sure how you could use the slant to transfer to your chair. Especially in the stall where the slanted bar started a foot in front of the toilet, which (if you’re picturing this in your head) would mean someone needing it would have to lean forward while sitting, and then pull themselves forward and up from a disadvantaged angle. (In that instance, I actually did use the bar behind the toilet, and the thankfully secure toilet-paper holder, to push myself up. Yay!)

So I was bitching about this to my mother, and she at first thought I was happy about the bars, and when I got to the part where I wasn’t, she said, “Oh wow, that would never have occurred to me!” And I was reminded then as now that this is why you really need those of us living in disabled bodies to weigh in on the accessibility changes you’re thinking of making. Because, yeah, if your legs work so well that you don’t even think about it, then the bars being anywhere and any which way is probably great. The tricky part is when one of us who needs help tries to use it, and it fails. So to conclude, here is a short list of things I would love to see in disability-accessible places, like hotel rooms and bathrooms:

• Signs like the one above in a different hotel, which offered to remove any room furniture that might get in the way of your wheelchair or mobility device;

• Shampoo and conditioner bottles wall-mounted within reach of the shower bench, instead of on the other side of the shower;

• Grab bars horizontal on the wall beside the toilet and maybe a fold-down arm on the other side, so that those of us who use them have bars on both sides, and those who need a clear space to transfer can fold the arm back up;

• A sign or SOMETHING in an accessible room that says how the staff plans to help you if the hotel catches fire. Or at least a very nice Scotch (maybe behind “break-in-case-of-emergency” glass) and an apology.

I feel like this isn’t too much to ask.