Monday 30 September 2019

October is Everything Month


There are way too many good things happening this October, and it's only just the first day!

The two big events, the ones most important to this blog are Joubert Syndrome Awareness Month and Blogtober 2019.

Like the previous two years, I'm going to try to at least work on something blog-related every day this month. I've made myself a list of prompts as well as a few specific posts I have in mind. In keeping with JS Month, a lot will be related to that but this time I'm not aiming for a specific amount of posts. I tried to go further than 2017's 13 posts last year and found myself struggling, so this year it's quality over quantity

I've got a retreat coming up later in the month with the JS Board, so there'll be a post on that.

Tons of fun stuff too, like a Grilled Cheese Fest here in Ottawa this coming weekend, which should be delicious. This Fall's Ottawa International Writer's Fest looks to have some great events, so I may try and get out to a couple of those (if I can successfully traverse the construction nightmare to get tickets...). And a nice Autumn weekend at the cabin for Thanksgiving in a couple weeks. Can't forget Halloween too!

All this plus several of my favourite shows returning to television, just in time to ignore football!

Cheers

Sunday 29 September 2019

Riding The Rail



This afternoon, my Dad and I took Ottawa's new light-rail (LRT) from one end of its two lines to the other and back.

After many delays, the new system opened to the public a couple weeks ago. Since it will be replacing certain bus routes in Ottawa's downtown area, including the one I use frequently, I wanted to try it out, with assistance, before that takes effect.

We got the regular bus down to the new, very accessible station (complete with stairs, escalators, AND elevators), waited for a few minutes, then boarded one of the cars. Very easy to get on and off of! This was one of the things I was curious about, having had issues boarding and exiting other light-rail systems before, but the entrances are level, the train itself is fairly slow and not jerky at all.

The ride itself was nice and smooth. I kind of wanted it to go a little faster, but that's really just a nitpick. The stop I would be getting off at if I wanted to go downtown is just about a block away from where the bus currently stops, so walking won't be an issue.

We could have stopped there, but we wanted to see the rest of the route. We stopped at a station with one of the largest escalators in a light-rail station, so I definitely WILL NOT be using that! Closer to the line's end, one of the stops was at a shopping complex called Silver City, which contains a major movie theatre my family and I would often go to when it was more convenient to travel that way. With this new light-rail route, that might be possible again.

Dad and I made it to the end of the line and went all the way back. It was an enjoyable trip, and one that I'm confident I could do on my own next time.

Cheers!

Friday 27 September 2019

Back to School: My College Experience



For my last Back to School post, I want to write about one of the achievements I get the most compliments for and questions about: going to college.

I've already written a couple articles about college and accessibility and some of the services I got, so for this post I want to stick to the experience itself, specifically during my first two years.

My college experience started in 2003 when I got accepted into Algonquin College's General Arts and Sciences - Pre-Media & Communications program!

With that done, I needed to find a place to live. At the time, we lived in a small town about 45 minutes from Ottawa, so I got into Algonquin College Residence, right next to the school. My parents were still able to come in to help me if I really needed it, and the residence had an attendant service program for disabled residents, but except for a roommate, I was living on my own. And that took a lot of getting used to!

In the first week and a half alone, I slagged a pot of rice when I put it in the microwave with no water, stinking up the apartment, drenched my clothes after failing to adjust a shower nozzle, and locked myself out of my room. Lessons were quickly learnt.

On the bright side, living mostly on my own meant I had my own TV, could stay up later (when classes permitted), and eventually, got used to spending longer periods of time away from my family.

College classes were an interesting experience. Algonquin's General Arts and Sciences was kind of like going to university without actually going to university. I took classes like Creative Writing, Psychology, Film Studies, and Presentation Skills, all of which were fun, and most of which, in hindsight, came in handy much later than they probably could have.

Socially, I got along great with my first two roommates, who I had met at summer camp years earlier, a couple mutual friends who came over periodically, and a few people I knew from high school. No immediate class friends though for most of the first year, just people-watching and lots of books and DVDs bought at the campus stores. During my second year, I started to relax and be friendlier. A Group Dynamics class made me some friends and lead to my first outing in Ottawa without my parents. It was to a bookstore, and I still talk about it every time I go by the place!

The end of that year was my first time on a bus and in a bar. My roommate and I decided to go see a movie one weekend, so we took the bus. He was in a wheelchair, so the driver thought I was his attendant and let me on for free! Later, I went to a bar in downtown Ottawa for a grad party. Fun time, but wasn't really my thing.

I think that pretty well covers everything! In the past few years, I've heard more and more of the older families and individuals I know within the Joubert community talk about how they or their kid is going to college, applying to college, or thinking about college, and it's honestly one of the topics I like hearing about the most, because I know what an impact those two years, and subsequent stints, had on me. I seriously hope, going forward, that more young adults, not just the ones I know, can have that same experience.

Cheers!

Sunday 22 September 2019

Back to School: Making Friends (or Not)


In my early school days, I had several friends. We'd play at recess, go to each other's houses, and celebrate birthdays.

But, when I was in the fifth grade, around ten or eleven years old, I was bullied pretty badly. Suddenly, the socializing stopped. I was still sociable, but I didn't have any friends.

Aides and even my parents would push me to be social, saying things like "Just go play!", or scolding me for reading a book during recess, or even making sure I was sitting with someone at lunch. This just annoyed me, and made me want to withdraw myself even more. I know they had the best of intentions, but it still bugs me, thinking back.

Over the next couple years, I stuck to myself a lot in school and at home. This was when I started getting into comics, writing, drawing, and other passions. And, even though I wasn't very social in school, I still did things outside of that environment.

The year I was bullied was my first year of Easter Seals Camp Merrywood. It was also around the time I really started to like Taekwondo. A few years later, I would start playing sledge hockey and going to a couple teen groups organized by the children's hospital I went to. The bonds I formed through these groups have lasted WAY longer than those made with anyone I ever went to school with!

As I got further into high school, the interests and hobbies I had picked up while not having friends were what helped me meet people who liked the same sort of things I did. The ability to pick my own courses during my senior years was a big help too, for much of the same reasons!

It's great to be social and have friends but, if you find yourself struggling at some point, it's not the end of the world. Find what you like to do, and eventually you'll meet people you fit in with, and who want to fit in with you!

Cheers

Tuesday 17 September 2019

My Bucket List Redux



A while back, I posted my bucket list. A lot of great ideas, but I've come to realize that some items may not be realistic.

See, I don't really have the "constitution" to go on flights longer than three hours or that go higher than a certain altitude.

This considered, I've decided to revise my bucket list to make it more continental.

I still want to see the La Brea tar pits and attend a major comic con like San Diego, but I think attending the Stratford Shakespeare Festival here in my own province of Ontario would be a lot nicer on my wallet and other parts of my body than flying all the way to England to see the Globe theatre.

New additions to the list include the following:

L'anse Aux Meadows, Newfoundland


The first and only Viking settlement in North America. I love history, really like Vikings and that whole time period, and I've never been to Newfoundland, so could be fun!

A week touring The Smithsonian


During the JS conference in Baltimore, I went with the family to DC for an afternoon and walked by several buildings within The Smithsonian's campus. Unfortunately, lines were well out the doors, so we couldn't go inside. I'd love to go back, take a week, and see as much as I can, especially the Natural History building, which now has a Deep Time exhibit dedicated to prehistoric life.

Eat my way through a State Fair


What you see there is a pickle-brat, a bratwurst, stuffed in a pickle, then deep-fried like a corn dog. Next to that is deep-fried Coke. I want them both.

Maybe I've been watching too many shows like Carnival Eats and Bizarre Foods, but for the last little while I've had the urge to eat my way through a state fair (most likely Syracuse, New York, since it's only a few hours away.) No rides, maybe the odd attraction, but definitely all the food!

Cheers!

Back to School: Inclusion and Exclusion


All through school, teachers did their best to make sure I was included.

I took French until the tenth grade. In Grade 6, it was common for students to go on a trip called Ecole du Neige (that's Snow School in English), a couple-day retreat to a camp where students spoke French, stayed overnight in cabins, and participated in outdoor, Wintry activities.

During the first parent-teacher meeting about the event, my parents, aide, and a couple other teachers were nervous about me going, but my French teacher, who was also leading the trip, advocated for my inclusion and said he'd find ways to accommodate me. I went, and most activities like game nights and snow fort building contests I did with everyone like normal, but for things I just couldn't do, like snowshoeing, I got to go snowmobiling, with my French teacher driving (he just wanted to do it, and I was his convenient excuse!)

In the eighth grade, my Gym teacher and aide coached the Boys' basketball and three-pitch teams. Since those were two sports I needed a lot of accommodations in order to do, my teacher came up with a clever way of including me. With her and my aide, I would act as assistant coach of both of those teams. I was tested on rules, had to attend the same practices and events, and had to follow the same conduct as the other players. 

Sometimes though, especially when I got into high school, exclusion had more benefits than inclusion.

All the accommodations in the world weren't going to prevent me from getting a dodge ball to the side of the head because I couldn't move quick enough. Same thing for games like rugby or floor hockey. 

And when I started to do exams and in-class essays, it wouldn't  have been fair to the teachers and other students who were concentrating on their work to have to hear me dictating to my aide, so doing these things in a separate, quieter room made more sense. 

Inclusion and exclusion. Both have their advantages and disadvantages. It's all up to personal preference. 

Cheers!

Sunday 1 September 2019

Maybe Don't Call the Disabled Activist Disturbed?



I don't usually post about things in the news, but this was a story that caught my attention yesterday.

Greta Thunberg is a sixteen-year-old environmental activist from Sweden. She is also autistic.

Andrew Bolt is a conservative journalist for an Australian newspaper.

About a month ago, Bolt mocked Thunberg in a column, calling her disturbed, a reference to facial ticks and movements. She was immediately defended by autistic individuals, as well as disability organizations like The Mighty. Thunberg, to her credit, seemed to shrug off the insult.

A grown man insulting a young woman would be awful enough, but picking on her disability as well is just pathetic. And "disturbed?" Such an archaic term. He might as well have called her hysterical or possessed.

Another aspect of Thunberg's autism that was attacked, was the tendency for people with the disability to fixate on things. This was used to question her activism. First of all, another cheap shot. Second, If this girl is going to fixate something, I'd say environmental activism and climate change are pretty damn good things to fixate on. It's called being passionate about something. Maybe people should, I don't know, encourage her.

I'd encourage Bolt to stop, or the publication he works for to do something, but upon seeing an article from just a few days ago about "Thunberg's child army", I don't think that's going to happen.

Fortunately, Greta Thunberg is now in the US, still sticking up for what she believes in.

Cheers