“Why Did You Turn the Subtitles On?”

As you know, I am the proud owner of a mystery version of ataxia. We know it’s genetically recessive, we know it comes with a lot of spasticity, we know it’s none of the known types, but we don’t know much else.

This means that I can take everything that’s wrong with my body and, without any proof of the contrary, blame it on my disability.

The thick and unbecoming calluses on my feet? A lovely gift from spasticity. My inability to type on my phone with my thumbs like a normal Millenial? I blame ataxia. The pimple on my face I haven’t been able to get rid of for weeks?

Well, okay, I probably can’t blame that one on my disease. But spastic ataxia is a neuromuscular disease, and as there are over 600 muscles in the human bodies, that is 600 ways in which my human body can let me down.

Human ears also have a number of muscles, so now that they have begun causing problems for me, I am blaming my disability.

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.

Handy Problems

Once, in a high school English class, our teacher asked us to describe something that annoyed us. For some reason, the thing that I felt the need to mention to my friends was the moment when, having just woken up, you make a fist and your fingers feel so weak you can’t force them closed.

My friends just stared at me. Blinked. “That’s not a thing, Elise.”

I laughed. I thought they were messing with me, that clearly everybody had the same muscle weakness when they woke up. For years afterwards, every time I thought about that (no idea why I’ve never forgotten it…), I still thought they’d been messing with me.

Until I got diagnosed with ataxia and thought… maybe that isn’t normal after all! Maybe this early-morning fist-making-refusal was my fingers showing their very first signs of ataxia. My muscles taking their sweet time to wake up in the morning.

So who knows. Maybe it was ataxia, maybe it wasn’t. All I know is, it still happens—I couldn’t punch anybody upon waking to save my life. And it’s still a thing that annoys me.

The Tightrope Act That Is Looking for an Apartment as a Disabled Person

If there’s one thing I really missed during these sixty-seven months of 2020, it’s sunlight, fresh air and vitamin D. And grass. I think I literally haven’t touched grass in over a year. In other normal years, in the summer months, I went to see friends, I travelled a bit, sometimes I grabbed a book and went to hang out at a neighbourhood park for a few hours. But this summer, I could go no further than my teeny-tiny balcony.

Why couldn’t I go walk outside, you ask? Well, under normal circumstances, walking as poorly as I do with a walker for any distance is tiring. Add to that my building’s inaccessibility—there are three non-automatic doors and four steps separating me from the street—and I’d be exhausted before even getting off the property. If this place had so much as a single ramp, I could have bought a wheelchair and gone outside this summer without exhausting myself, but no, instead I had to sit on my minuscule balcony and stare with envy at my neighbour’s dog frolicking in the grass.

(There is another exit, but there’s a literal tree growing in the middle of the path there. I wish I was kidding.)

That settled it for me: I’ve had it up to here living in an inaccessible building. I want—I need—to live in a place I can move in fully (and also ideally with soundproofing that doesn’t make me feel like my upstairs neighbour is about to crash through the ceiling…)

Do you have any idea how difficult it is to find a place as a disabled person, even a mildly disabled person that doesn’t even have that many requirements?

Very.

September Photo Challenge: Part II

September was muscular dystrophy awareness month. Ataxia is a form of muscular dystrophy, so hi, we’re in that too! In fact, September 25^th is specifically Ataxia Awareness Day.

Someone launched a photo challenge two months ago, putting up a prompt a day for us to talk about our lives. I was too lazy to do it in September, of course, so I thought I’d do it now, bunching up a few prompts together to make a full article. I picked the most relevant prompts, those having to do with disability itself, since I doubt you care that my first pet was a hamster named Pompon or that I still sometimes sleep with a stuffed dog named Penny.

The first five prompts are over here, and here is the next batch!

September Photo Challenge: Part I

Last month was muscular dystrophy awareness month. Ataxia is a form of muscular dystrophy, so hi, we’re in that too! In fact, September 25^th is specifically #AtaxiaAwareness Day.

Someone launched a photo challenge last month, putting up a prompt a day for us to talk about our lives. I was too lazy to do it in September, of course, so I thought I’d do it now, bunching up a few prompts together to make a full article. I picked the most relevant prompts, those having to do with disability itself, since I doubt you care about my favourite dessert (chocolate mousse) or the fact that my desk is an absolute mess right now.

So here goes with the first five prompts!

More Buildings

In keeping with the theme of my last article, I thought I’d write another one on the annoying architecture of some buildings I’ve had to frequent for a time; namely, schools.

I’ve attended nine schools in my life, and I realized the other day that with the exception of the last three (one of which is online so it shouldn’t even really count…), none of them were built in an accessible way. In other words, had I been “disabled enough” to use mobility aids from childhood, I could literally not have attended any of the schools I went to.

The Office That Tried Its Best to Be Accessible

Once upon a time, I left my house every day to go to work—an actual desk job in an actual office. It should not come as a surprise to any of you who live in today’s society that this building was not accessible. It was not the day I started the job, April 27, 2015, and it was not on the day I left, September 13, 2019. “But it was so much better then!” my abled coworkers would protest. “See, we installed an accessible toilet!”

As you will see in this article, that wasn’t enough.

Finding a Balance Between Ease and Necessity

Every so often, I lower my hand next to the chair I’m sitting on and wiggle my fingers in the general direction of my cat. Most of the time she comes running, excited for the free scritches I’m offering. But sometimes I get nothing, so I look over at her, and I can just see her weighing her options while she stares at me. Are my pets worth getting up and leaving her comfortable napping spot for?

And I can relate with that feeling so much. Sometimes it feels like living with ataxia is a constant game of balance (both literally and figuratively), of weighing costs and benefits. Do I really need to get up and pee or can I wait for my alarm clock to go off in two hours? Am I thirsty enough to go get a drink now or do I wait for lunch? If I just sat down at the table and realize I forgot my fork in the kitchen, I seriously consider whether or not I can manage with just a knife and my hands before getting up and getting my fork.

How Ataxia Killed My Dream of Becoming a Biologist

Okay fine, I’m being dramatic, ataxia didn’t actually kill anything. After many years of studying science, up to a bachelor’s degree in biology, with the goal of becoming an ethologist (animal behaviourist) I decided, in the third and last year of my degree, that it wasn’t for me and applied to a diploma in translation instead of the master’s program in ethology I’d had my eye on.

That switch in career paths happened in 2010, still over a year away from my diagnosis as an ataxian, but I think you can still fairly say ataxia, or at least disability as a general concept, was the reason for that change. Now, I do not regret at all having made it, I love what I do, but I don’t regret either all the time I spent studying science and biology. Yes, even microbiology. However, I am also quite certain that if ataxia had never entered my life I would have pursued the career I’d dreamed of. Maybe I would have ended up making the same career decision and switched to languages sooner or later, or maybe I’d have spent my whole life working in a zoo or animal sanctuary somewhere. I’ll never know.

Let us explore how ataxia threw a wrench in my carefully laid life plans, shall we?