The Boy With The Beard

Surly, hirsute, teenage goodness. 

I've always been pretty short for my age. It's partly to do with my disability (something about limbs, growth, and mobility). Over the years, especially in adulthood, it's resulted in quite a few funny and strange encounters with people.

For the record, I have no problem with people asking me things related to my disability, or having people look at me. Little kids seem to do it a lot. It can be a little creepy, but mostly it's just funny.

In my mid-teens, I decided to grow a beard. Guys in my classes were doing it, and I kind of wanted to fit in a bit and look "cool." My mother was never too keen on it. Looking back, it's almost awesome to think that, with all the issues and differences, I still managed to do something in my teens that one of my parents wasn't exactly impressed with.

Anyway, one day I was walking around town, running some errands. I walked by a little boy and his mother. As I walked past, I heard the boy turn to his mother and say "Mommy, that little boy has a beard!" When I was out of earshot, I laughed out loud. I could've been embarrassed but, fifteen years old, 4'9", and hairy is a pretty weird combination, so I couldn't fault the kid. Still a funny story.

These days, I'm a little taller and a lot less bearded, but that doesn't stop the looks (even more so from kids) or the odd question. Recently, I was actually asked by a guy if I was a "giant dwarf". Yeah! Part of me was kind of offended, but then I realized that what he called me made absolutely no sense and was a total oxymoron anyway. I just said no, and moved on. Some people are just strange, I guess.

I know there are a lot of parents and individuals in the disability community who don't like being asked questions and who are uncomfortable with stares, and that's totally okay, but these stories have kind of shown me that most people are less rude, and more curious or weird. Rather than being upset, I choose to indulge the former and ignore the latter.

Cheers!

The Good Doctor Is Pretty Good, I Guess

A while ago, I wrote about my rather negative opinion of new show The Good Doctor.

After reading a pretty nasty opinion piece on an other disability website that made mine look absolutely glowing, I decided to give The Good Doctor a second chance and watched an episode.

While it's not something I'd get invested in, the show was pretty good. The autism stuff is a unique hook and Freddie Highmore comes off as a  pretty good actor. In general, it's a decent medical drama.

I think what got me so riled up in the first place were the previews and initial reviews. The previews seemed to focus too much on the lead's autism and reviews were kind of sappy, going on too much (in my opinion) about inspiration. Too many bad disability cliches.

The truth is The Good Doctor is just a show and I jumped the gun and was maybe too quick to judge.

Kind of glad I was wrong.

Cheers!

The Waiting Game

They say "All good things come to those who wait." Well, whoever those people are, they obviously have never had to deal with accessible transit, housing wait lists, or any other service for disabled people.

Example: Today, I met a friend to see the new Justice League movie. The pick-up to the theatre was fine (pretty early, but there was a Starbucks within walking distance so no big deal), and the movie was awesome! It was the return trip that was the problem.

I phoned Para Transpo after the movie to check the drivers ETA and was told about 25 minutes. Para Transpo comes with a grace period of half-an-hour on either end, which I understand. And normally, I'd be okay with waiting around, but not this time. My friend needed to catch a bus (most people I know understand Para and will occasionally wait, but I'm also understanding when they need to leave), it was getting cold (November in Canada, eh), and I didn't want to stand outside a theatre for nearly 30 minutes looking weird. Thankfully, I only live about ten minutes away, and my Dad was able to pick me up.

But this has happened before, only with no response from Para and no family nearby (cabs and a disability pension can be a pretty good combination in a jam.) Luckily, this kind of scenario hasn't happened too often.

Whether things work out or not, it's still a waiting game and it sucks. One of the reasons I carry a novel everywhere I go.

And if waiting for Para Transpo is annoying, then the waiting game for housing is downright painful! I first went on a waiting list for accessible housing in Ottawa in 2009, just after I was accepted into Scriptwriting. When my family and I were settled in the city, I went on another list for more locations. That's almost eight years, the better part a A DECADE, waiting on a list! Once a year, I phone in to check my status, usually to no avail. Every two years, I get asked to update or confirm my interest so they can keep my account active. The average wait time is about twelve years, so at least I know I may get an answer before I turn 40...

As with Para, it sucks but at least I've got my family who are willing to help and help me look for alternatives.

I understand waiting for medical things (consults, procedures, etc.) can be a pain too, but I haven't had much experience in that are, so I can't really go there.

So yeah, waiting sucks royally. There are a lot of screwed up systems and services out there. But, there are also some things I'd rather have than not so, with varying amounts of patience, I'll just keep waiting, looking for any alternatives I can, and always with my nose in a book.

Cheers

So. Many. Ideas!

I've been on a bit of a self-imposed blogging break since last month's Blogtober, focusing on looking for work and trying a couple new social things.

Now I'm trying to write again and I've got SO MANY IDEAS!

Really. At the moment, there are about four drafts on here, each with five sentences or less. I found a website full of fun, quick writing prompts which, hopefully, should give me enough creative juice to sift through at least a few post ideas and get them on here.

So, many posts will hopefully be on here at some point in the near future.

Trudging onward.

Cheers!

A Misdiagnosis Is Still A Diagnosis

Having been diagnosed well into adulthood, it can be easy for people to assume that I went almost 26 years with no answers regarding my health and disability.

While it's true that the Joubert syndrome went unnoticed for that long, even when it was noted on an MRI, I did still have an answer.

For 26 years, I had cerebral palsy or some form of it. It's what doctors noted on my files, what teachers and school staff heard in IEP meetings, and what I used to get various services and participate in disability-related activities. In hindsight, it wasn't an accurate diagnosis, but it was one that fit and made sense at the time.

Yes, there were things that didn't mesh with a traditional cerebral palsy diagnosis, but most of those things were either fixed (extra finger, crossed eyes), or just dealt with as best as possible (frustration, leaning). The important things is everything was handled, regardless of what I was diagnosed with at the time.

So, while finally getting the Joubert diagnosis was great and has made a huge difference, going 26 years without it wasn't all that bad, either.

Cheers!

JS Awareness Month/Blogtober - Looking Back

Well, Joubert Awareness Month and Blogtober are officially over, and I'd say they were both huge successes!

JS Awareness Month went over very well, with many people contributing in their own way.

The Joubert Foundation surpassed their fundraising goal of $31 000 in 31 days! Some people shared daily facts, photos, or stories about their children. One friend of mine, whose little girl has JS, collected and shared 65 stories/photos of affected individuals, myself included.

For my part, I was able to crank out 13 posts on the blog this month thanks to Blogtober, with 2145 views in total. 1543 of those views went to Joubert and disability-related posts!

Blogtober proved to be a pretty good experiment and kept me busy for most of the month. Definitely something to do again next year.

Cheers!