Tuesday, 11 July 2017

Countdown to Phoenix

One more week until the Joubert conference in Phoenix and, despite tales of super-hot temperatures, I'm officially excited!

The whole family's going again, and we fly out early, early next Tuesday. First to Calgary, then southward. We're going early and flying out later so we can enjoy both the conference and Arizona itself. Shopping, Mexican food, lounging by the hotel's amazing-looking pool, and photos in Winslow (because we're Eagles fans and also stereotypical tourists) are all on the vacation agenda.

This will be my first conference not speaking, but I'll still have lots to do! I've been asked to lead another discussion group for the older youth in attendance, so that'll be interesting. I've also helped plan a casual meet-up for the adults who are going. Way more than previous conferences, two of whom are already pretty good friends, so this should definitely be a highlight of the week!

Add to that the Facebook friends I finally get to meet in person, and the usual cast of characters, and there'll be no shortage of good times next week.

I've also been presented with a great opportunity this conference that could lead to lots of advocacy, but more on this later.

Like Chicago two years ago, expect a huge post detailing all the great times when I return!

Until then, cheers!

Disability Stuff

The last few weeks have been a pretty mixed bag, disability-wise. A few weeks ago, I met with a caseworker in regards to the disability pension I receive. She was very nice, and gave my father and I some pretty good information, but was pretty upfront when it came to questions about getting more money (not likely going to happen). Not her fault though. At least she was sympathetic to what we were going through.

Later that same week, my parents and I met with a local politician to discuss issues I've been having trying to be more independent, and what might be done on his end to help matters not just for me, but for others. Roughly the same outcome as the caseworker: sympathetic, a few ideas but, ultimately, not much in terms of results. I'm currently drafting a letter to a few other local representatives to see what kind of assistance they could offer.

The next week brought housing headaches. During the meeting the previous week, I had been told about a new housing development I could look into. I did, but their prices were too unrealistic for the money I currently get. This was the straw that broke the camel's back. For the first time in about two years, I lost it. I didn't get angry or freak out like usual, I just sobbed for a good couple minutes. Thankfully there was a comic jam that night, and a mix of friends, book recommendations, and Chinese food put me back in good spirits.

And now comes more job searching. I've written before about how the service provider I'm currently with seems way more proactive, but it's been three years and I'm contemplating a change. Several months ago, I heard from another provider, and they think I would be a good candidate for their employment program. I've contacted their rep and pending a reply, should have things figured out when I return from vacation in a couple weeks.

In the meantime, I just applied to a few part-time jobs and got accepted for a position that could turn into a great advocacy opportunity (can't give specifics just yet), so those are wins!


Thursday, 22 June 2017

Accepting Help

When it comes to asking for help, I can be pretty stubborn at times.

Sometimes it's just regular thick-headedness, and sometimes it's about trying to do too much on my own because I think asking for help will make me look weak or less independent.

The stubbornness reached its worst point during one stint of college. Rather than being smart and asking for help when I should have, I took on too much, failed a couple classes, and dug myself into a deeper hole trying to get out of the one I was already in. It ended up costing me money, independence, and a bit of trust from people who cared about me and would've been more than willing to help me if I'd asked them to.

A year of doing next to nothing in a very small town made me see the error of my ways, and when I got accepted into Scriptwriting, I was smart enough to take it slow and ask for help immediately.

Seeking more independence the last couple years through employment, housing, and home care has been exceptionally tough, and there have been plenty of times I've tried to look for solutions on my own (or at least with just my parents), but the assistance I've received from social workers, employment agencies, and others has been a big help and has made things much less stressful.

It might not seem like it at first, but admitting you need help when there's something you can't do doesn't make you look weak, and people won't think less of you for it. In fact, accepting help shows a sense of responsibility and makes you more independent, freeing up time and energy to devote to other things.

Accepting help for yourself also helps others. For one, those around you won't have to worry about whether or not you're in dire straits. Additionally, it shows respect towards the person(s) offering it.

I know first hand what not accepting help can lead to, and I've seen others in the same situation. I don't ever want to go down that road again *knocks on wood*, and I really hope that, in reading this, people will avoid doing the same.


Saturday, 17 June 2017

The City

Seven years ago tonight, I became a permanent resident of the city of Ottawa. Technically I'd been living in the city for months prior because of college, but on that day it became official!

It was a night that changed my life, for the better, forever. Up until then, I'd been living in a small, rural town called Winchester, about forty minutes outside of Ottawa. I'd lived there since the age of eight. It was a nice place to grow up in but the more time I was spending away at college, the more restless I was getting to leave. The truth is, it may have been a nice place to grow up in, but it wasn't exactly the most ideal place for a physically disabled adult looking for some form of independence.

Moving to Ottawa permanently allowed me to branch out in so many different ways and become more independent almost immediately!

There's a lot about Winchester I look back on fondly, like our house, the pool we had, and the sense of security a small town vibe gave, but some of the experiences I've had here have made it a worthwhile trade-off and I'm still so thankful that my parents decided to make the move.

Just something I wanted to share.


Friday, 16 June 2017


Just a small sample of what I currently own
Just a random, fun Friday post.

I have a confession: I'm a massive bookworm, liking most things, but preferring science fiction, fantasy and, of course, comic books!

As soon as I learned to read, my parents encouraged my love of books, and I've never stopped. I've almost always got a new novel on hand to dive into which, these days, can be very convenient for when things are going slowly with Para Transpo!

In elementary school, when other kids were playing soccer or fooling around on recess equipment, I was often the kid sitting in a corner, reading about Norse mythology, dinosaurs, or some other interesting topic! I read so much that I think some teachers thought I was a little weird. Now, don't take that as something sad. I wasn't doing it because I felt left out or anything, I was a reader by choice. Much easier and safer than running around a baseball diamond or interacting with kids who were bullies, if you ask me.

In my early teens, I discovered comic books and my life was forever changed and improved! The earliest memories I have of doing something on my own involve entering a comic shop and using what allowance money I had saved to purchase the latest issues of Avengers and Thunderbolts!

In high school, I was exposed to the classics. I had an English teacher who noticed my almost stubborn reluctance to read any book that didn't have a dragon, alien, or superbeing in it so, one day, she lent me a stack of books that included titles like 1984, War of the Worlds, and The Hobbit. Still within my wheelhouse, but a little more advanced than the latest installment of Animorphs.

My love of reading soon led to career ideas. I knew for a while that I wanted to do something with comic books, so this took me down several paths, including animation and public relations, before finally realising my passion for writing and applying to Scriptwriting! That led to quite a few successes including social ones, but never really produced anything financially viable, so comics were relegated to the status of a really awesome hobby and interest while I pursued advocacy. Doesn't mean I'm any less of a book nerd, though!

In an age of Netflix, the Internet, iPads and other distractions, it can be way too easy for people of all ages to get hooked on "screens." It can also be too easy for people to adopt the "wildhood" mentality as a remedy, and become very outdoorsy. While both screentime and wildhoods have their advantages, why not pick up a good old fashioned, paper-and-ink book and let your mind wander for a while. It might just lead to a passion or even a career.


Sunday, 11 June 2017


Today is the CHEO (Children's Hospital of Eastern Ontario) Telethon. I've already made my yearly donation and now I want to share why it's so important for me to do that.

Growing up, I spent a lot of time at both CHEO and OCTC (Ottawa Children's Treatment Centre), which recently merged. Between the two places, I had at least five regular doctors and a whole host of others who saw me over the course of twelve years.  Lots of routine appointments and a few scary surgeries and hospital stays, but some good times too.

OCTC was where my parents first learned about both Tae E Lee's Taekwondo and Easter Seals Camp Merrywood, still two of the best experiences I've ever had! It was also through the Treatment Centre's Teens First program that I got to meet and befriend many other youth with physical disabilities.

When I hit my late teens and my time at these institutions was nearing an end, it was a bittersweet experience. On the plus side, it was a sign that I was reaching adulthood. On the downside, the transition, in some cases, left much to be desired. Those few issues resolved themselves though, and I moved into adult healthcare. However, it turned out that neither CHEO or OCTC were done with me.

As I've written about a few times, I was in the middle of a routine appointment with my family doctor in 2011, when she brought up Joubert syndrome. Genetic testing was recommended, and that brought me right back to CHEO, a good eight years after my last appointment, to their Genetics clinic. And, we know how that turned out (new diagnosis, rare disorder, speaking/writing, tons of friends, etc.)!

My return to OCTC came a little later. In a moment of combined boredom and ambition during the winter of 2013, I decided to volunteer with OCTC's Foundation office, doing fundraising, data entry, research, and other small jobs. I had originally only planned on doing it for a short while, but I liked it so much I kept at it for the next three years!

I've been fortunate enough to be able to finds different ways to give back to these institutions, without whom I literally would not be alive today, and will continue to do so in the future.


Tuesday, 30 May 2017

Much Ado About Spray-paint

I recently read an article where disability advocates were lobbying to get the symbol for accessibility changed from the one pictured above, to this:

A part of me understands why this new symbol would appeal to advocates and activists. It portrays the individual represented by the image as being active and doing something independently.

However, I have two major issues with it. First off, the current image in use (seen at the top of the post) is a universal symbol, similar to a red cross on white representing hospitals and healthcare, or the various male and female symbols that signify public washrooms. Anyone from Toronto to Tokyo can see symbols like these and, within reason, know what they are.

Additionally, the newer symbol looks a lot like someone in a race chair, an athlete. Compare this to the current one, which could represent any number of individuals, from those in electric wheelchairs, to people in manual ones, to simply someone who's broken their leg and needs a wheelchair for temporary assistance. Suddenly, the new image doesn't seem very inclusive. And isn't that what most advocates and activists are striving for?

I get that people with disabilities want society to see them as more independent and capable, but I also believe that people who are so up in arms over this symbol need to realize it's ultimately just a spray-painted image, one that everyone recognizes worldwide, and start concentrating their efforts towards bigger, more important issues.