“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.

The Quest for Botulin

As disabled people go, I’m quite privileged. I was diagnosed relatively quickly with my rare disease by a renowned neurologist in the field. Through him, I got referred to and taken on by a rehab centre that offers all services to patients like me, from psychology to physiotherapy to wheelchair repairs.

Of course I’m also privileged by the fact that I was born and live in Canada, so all of the above has always been free for me.

Every time I hear a tale of the system failing for a fellow disabled person, I feel even more privileged, and wonder how and why I got so lucky. But now, I have a tale of my own to share, about the system breaking down around me, and leaving me to have to advocate for myself to get the most basic treatment! All I wanted were my usual Botox injections…

No Time Like the Future

You’re probably all familiar with Michael J. Fox, of Marty McFly fame. More than his acting, he’s been known lately for his activism and his foundation, the Michael J. Fox Foundation, whose goal is to help find a cure for Parkinson’s disease, which he was diagnosed with in 1991, at age 30.

My mom has been a fan of his since his Spin City days. She’s read a few of his books, and was really pushing this one on me, trying to get me to read it and review it here.

“It’s kind of written in the style you use for your blog articles…”

Okay, sounds cool.

“… only, you know, funnier and better, obviously.”

… Obviously.

Anyways, I read it, and now here is my review!

Why I Don’t Want COVID

“But ataxia and spasticity don’t affect the immune system, so it’s not like you’re particularly at risk, right?”

Well, yes and no. I am indeed not more or less likely to catch it than anybody else, because my immune system is chugging along just fine.

On the other hand, if I do catch it, ataxia apparently puts me at higher risk of developing severe respiratory symptoms, and the recovery period (you know, if I recover) can be longer.

Oh, the Places You Made Me Go

During my latest physiotherapist appointment, we found out that I can walk a grand total of 68 metres in five minutes. And then I need to take a break because my arms hurt. Yes, walking makes my arms hurt. That is a thing when you use a rollator, apparently.

I was diagnosed ten years ago, but have obviously been alive longer than that, so you can imagine it hasn’t always been like this. My parents enjoy walking and travelling, for example, and when I was younger, well, I had no choice but to go along with them. Today, I look at photos of those trips and marvel at how I was able to do all those things. Walk. Run. Climb stairs. And look how straight my legs were! Of course, knowing now that I’ve technically had ataxia brewing in me since my birth puts a whole new perspective on why I actually complained about all those things (except the straight legs—I loved that bit!)

Let’s Go for a Walk

As I think I mentioned in another article, the thing that bothered me the most about last summer’s pandemic reality was not being able to go outside. There were stairs all around my building, so I couldn’t leave easily, and while I could take my car to go somewhere … where would I go? Everything was closed, so it’s not even like I could go to the bathroom if I needed it. So staying on my balcony all summer it was.

But this summer, I was living in a new building with a ramp, and there is a park about half a block from my building where I could go hang out and read in the sunlight and fresh air. I rented a wheelchair for the season, thinking that in no time I’d be wheeling myself around the neighbourhood, enjoying the summer I’d missed last year.

Ha! No. Did you know wheelchairing is hard? I mean physically, of course, though that was the easy part. I already had strong arms, and I’ve been using wheelchairs occasionally for years, so I know how to maneuver. Except the times I used wheelchairs were inside buildings, or on carefully curated paths. I’m sure you’ll be surprised to learn that in real life, cities and sidewalks are not made with disabled people in mind. Shocking, I know.

Let me take you on a little picture tour of the obstacle course between my building and the park

Time for an Ad Break

I’m a weirdo who still likes watching TV live, with the commercials. I’m not riveted to the screen during them, obviously, but I catch them from the corner of my eye. And one thing I’ve noticed this year is that there has been a definite increase in the number of disabled people seen in commercials. And most of those aren’t even about disability, but there are still disabled people in them, living their lives, advertising whatever the commercial is for and showing watchers that disabled people are more than their disability.

Here are some of them, mostly from Canada, of course, since that is where my TV comes from:

Disability Pride Month

Did you know that the month of July is Disability Pride Month? If you didn’t, I will be very insulted.

…

Lol, just kidding. It’s not like we have a parade, or companies changing their logos to showcase our flag (yeah, we have a flag too!). It’s not like disabled people get pushed to the forefront of campaigns for a while, or their achievements get highlighted more than usual. It’s not like anyone who is not disabled cares, basically. I mean, I didn’t even know we had a disability pride month until I saw disability activists mention it on Twitter. So why would I expect anyone else to know about it?

The Americans with Disabilities Act was signed in July 1990 by President Bush. In 2015, for the ADA’s 25^th anniversary, New York Mayor Bill de Blasio declared the whole month of July to be Disability Pride Month. So it is by no means an official or international celebration, but activists around the world grabbed it and are running (or rolling) with it. Why shouldn’t we be allowed to celebrate who we are for a while too?

What does Pride mean to me, in the context of my disability? Let’s look at what the Antidote dictionary says about pride, shall we?

Words for Someone Newly Diagnosed

Today, another question from the September Photo Challenge which, let’s face it, we all knew I wasn’t going to finish in any reasonable time. But this question I found interesting, and had an answer for all ready, before procrastinating for months and never writing it.

So, what would I say to someone newly diagnosed (with any disability, not just ataxia)?

Surround yourself with other disabled people.

37 Seconds

37 Seconds is a Japanese movie I found on Netflix. It is the story of Yuma, a twenty-three-year-old manga artist with cerebral palsy. It stars Mei Kayama, an actor… with cerebral palsy!! Yuma lives with her overprotective mother and works for Sayaka, her childhood friend, now an influencer, blogger, and manga artist… publishing Yuma’s work under her name. It’s a “coming-of-age” story for this disabled woman, the tale of her creative, personal and sexual emancipation.

This is nothing like most movies about disability we see these days. For one thing, no cripping up, all the disabled characters are portrayed by disabled actors! But also, even though Yuma’s CP is quite central to the story, we are clearly shown that her disability is not all she is. We see her drawing, making phone calls, taking the bus, the train, going places, all independently, maneuvering her own electric wheelchair without help. Now, I’m told that Japan is far from the most accessible place to live, so I don’t know how realistic those situations are in the real world, but the point is we see a disabled woman living her life, rather than a disabled woman just being disabled.