Internalized Ableism is Real, People

(As you can probably tell from this super evocative title, this will be an article about showers!)

In the fall of 2016, an occupational therapist visited my apartment to lend me mobility equipment to help me with my daily life. She brought a floor-to-ceiling pole to attach next to my bed, so it would be easier for me to pole-dance get up from my bed. She also brought four blocks to put under the feet of my couch, so it’s raised higher and it, again, makes it easier for me to get up (I forget they’re there until I sit on somebody else’s couch and it takes me about three entire minutes, seven tries and a whole ab workout to pry myself out of it).

And she brought a shower chair.

Remember, this was 2016, I had just started using a rollator a few months previous, was still getting used to being visibly permanently physically disabled. The blocks under my couch were fine, I barely realized they were there, and right from the start I could see how they helped. The pole was acceptable; I still tried to kid myself that I could ignore it if I didn’t want to use it (spoiler alert: I could absolutely not). But my mind drew a line at the shower chair. I could still shower standing up, I didn’t need to sit down! Only old people need to sit while showering, not me! I’m not that disabled!

So I made them take the chair back.

The thing with a degenerative disease, though, is that it degenerates. What is true one day might not be a week, a month, a year down the road. The day I refused a shower chair, it was true that I didn’t need one. I could still shower standing up from start to finish with relatively few issues; a shower chair at that point would have been nothing but a hindrance.

As my ataxia and spasticity continued to evolve, slowly but surely, I began to lose some abilities, most of the time not even being aware of it. At some point it became too difficult to do things two-handed while standing on my two feet in the middle of the tub (like shampooing or rinsing my hair), so I had to either hold onto a grab bar and manage with one hand, or lean my butt against the wall, feet carefully braced so I wouldn’t slip.

Eventually it became impossible for me to bend far enough to wash my lower legs and feet, as well as much too dangerous to stand on one foot and raise the other. So I started having to sit down on the floor of the tub to wash my body. That implied positioning my body so I was certain I wouldn’t slip and break my tailbone as I sat down. And, later, I’d have to swing my legs over the lip of the tub and pull myself out using the grab bars.

In other words, little by little, I was adding time and effort to my showers. It happened so slowly, so incrementally over the years that I barely noticed that my time in the shower had basically doubled in four years. I knew forty-minute showers were ridiculously long, but I blamed it on daydreaming—after all, I’m a writer, and we all know writers get their best ideas in the shower, right?

Then, this February, I moved to a new apartment. It’s lovely for many reasons, one of which is the nice clean bathroom (with plugs!!). Problem: the bathtub is high. Like, high. More than knee-high. I couldn’t raise my legs high enough to get in normally, so I experimented by sliding in from sitting on the toilet. Then, once inside, I tried sitting down and getting back up and out again. I tried twice, and both times I had to sit and catch my breath for a few minutes afterwards because I’d exhausted myself. And keep in mind that this was clothed in a dry tub; imagine, naked and wet, I probably would have broken a few limbs by the time I left the shower.

So I had to resign myself to getting a shower chair, there was no way I could get around it this time. When an occupational therapist came to visit the place a few days after I’d moved in, I asked her to recommend a chair to me. She advised me to get a board instead, something that is placed on top of the tub and goes from one side to the other. I can use it to sit on and swing myself in or out, and have enough room to stand up and sit down when I need.

Guys, this thing has changed my life. I stand up to get wet and rinse, but sit down to shampoo and soap. My shower time has literally been cut in half, and I’m not doing anything less: twenty minutes, and I’m clean and out of the shower. I no longer need to block a whole hour on days I need to wash, or plan my entire day around the time I’ll need to shower.

I now realise that the time I used to spend just leaning against the wall with warm water running over me was not daydreaming, but my body needing to pause, to recuperate some energy I hadn’t even noticed losing or getting mentally ready for my next big move. Now that I don’t need those moments of rest, everything goes so much quicker. I still daydream, but now I do it while washing, since my brain is no longer busy trying to keep me vertical at those times!

What does that have to do with internalized ableism, you ask?

Mobility aids and such devices were designed specifically to help disabled people, people who might need them, people like me. I go through the same cycle every time I start to use a new one: first, I recoil in horror, “that’s for old people, I don’t need that, I can still function!”; second, I don’t have a choice anymore and have to integrate it into my life for my own safety; third, I fall in love with it, am amazed at how much it actually helps, and chastise myself for not trying it before. Lather rinse repeat.

It happened with the walker. The first time they wanted me to try one, I burst into tears and wouldn’t even touch it. Years later, using one daily for the first time, I was amazed that I could walk without staring at my feet to make sure I wasn’t going to trip on anything. I could look at the person I was talking to, how cool was that? My first time in a wheelchair I was so embarrassed that I wouldn’t raise my eyes and risk anyone seeing me. Now, when I need to use one, I sit down in it with relief at being able to move around freely without having to force my legs to do something unnatural for them: walking.

Those thoughts, that those aids are just for seniors or for people who are broken (“more broken than you”), are ableist. We hear them so much from ableds (in fact when I typed “mobility aids” in Google just now, the first suggestion was “mobility aids for seniors”…) that we start thinking them ourselves as disabled people.

So my challenge for the next aid that is offered to me will be to not be repulsed, and instead think of it with an open mind, of what it can bring to me rather than of what others will think of me if I have it.