Monday, 11 September 2017

New Things

A couple new things I wanted to share!

First, I've found a medical-themed website called You and Me that takes story submissions. The site takes articles and stories with a personal twist. I've decided to combine ideas from several blog posts I've written into a story about finding other adults with Joubert syndrome, and how that lead to things like the Youth and Adults Facebook group and the discussion groups I've lead at past conferences. If they accept, I could even get paid for it!

Next, I'm currently in the middle of switching service providers in order to help out my search for work. I'd been with one, Distinct Programmes, for a few years. The people there were friendly and fairly proactive, helping me get a few interviews and the placement I did last summer, but I just felt like a change. Another group, Live Work Play, was recommended to me. It's a fairly large organization that caters to adults with intellectual disabilities. While my disability is more developmental, a few of the organizations staff seem to think I would be a good fit and are interested in meeting me to discuss employment. Just waiting to get through some red tape, which is a pain...

I've also decided to join Live Work Play as a member. They do a lot within the city, the social opportunities couldn't hurt, and I could even try to get some advocacy out of it. Plus, they seem to organize a yearly trip down south. Can't really argue with that!

I'd be lying if I said the thought of doing all of these things didn't scare me, but for the sake of money, work, and getting out, I can easily suck it up.


Wednesday, 30 August 2017

Bad Thoughts About The Good Doctor

I've been seeing lots of previews for The Good Doctor, an upcoming TV show about a young man with autism who becomes a surgeon. While it's good to see programming featuring characters with disabilities, this one scares and offends me.

The trailers show that the lead character is chosen by a group of doctors to be a surgeon because he can see how things are. He isn't a student, doesn't seem to have any experience, it just looks like he's a guy off the streets who visualizes body parts and organs.

I know it's fiction but, as a disabled adult who's coming to terms with things like realism and looking for employment, and also speaking to youth and parents about those topics, the whole premise of this show is deeply disturbing. One, it's patronizing. The lead seems to be little more than a pet project thrown between two groups of doctors, one who have to prove he can do it, and another who are the nay-sayers, and will undoubtedly come off as bullies (there's already a clip of another surgeon telling the lead he "doesn't belong here" while they're operating).

Two, it's insanely unrealistic. Again, it's fiction, I get it. But, my primary beef is with the concept of the lead becoming a surgeon just because he can see things. With that logic, I should've been over-qualified to be a paleontologist because I can picture dinosaurs and other prehistoric creatures, never mind the math, accessibility, and other issues.

I'm just concerned because I can imagine parents or disabled individuals watching this, and maybe being mislead a little. I'm not saying a person with a disability can't be a surgeon or something similar, it's just the way the show portrays it seems ridiculous.

And of course the network it's on is labeling the show as inspirational, because disabilities. Sorry, but nope. A man instantly becoming a surgeon just because of savant-like qualities is not inspirational. You want inspiration, be a little more realistic. Have a character train and go through the process first, like a med student or nurses assistant, but don't give me a character like the lead in The Good Doctor.

All due respect to the show's cast and crew, but I won't be watching The Good Doctor when it premieres next moth and I sort of hope it doesn't last long on the air. If it does, however, I hope viewers are smart enough to see it for what it is: fiction, and only that.


Tuesday, 29 August 2017

Writing About Writing

I'm in a coffee shop downtown and in a random sort of mood, so today I'm going to write about writing. Specifically my writing history and how I started writing about disability issues.

This is sort of inspired by a conversation I had in Phoenix with a friend's mother. She liked reading my blog posts and asked me what made me get into writing. I told her about wanting to write comics, and getting into Scriptwriting, then pitching my own story a few years later. I remembered the brief conversation the other day, and got thinking about just how far back my interest in writing, both fiction and non, has gone.

For me, writing started way, way back when I was six years old and in the first grade. We had to write in journals each day, and because of my disability, I got to use a computer. While the other students were certainly writing about sports, friends, or their pets, I (of course) was writing about adventures involving superheroes and a number of strange creatures.

Later on in high school, I got my first computer and, between school assignments, started writing again. Same mix of heroes and creatures, only the stories had expanded and matured a little.

In college, I took a creative writing class and started to write non-fiction. Stories of dragons and two-headed tigers were replaced by mini essays about my disability or attending Easter Seals Camp Merrywood when I was younger.

It was around this time that I had started to get more serious about public speaking, with focus on transitioning to adulthood with a disability. While I was coming up with ideas, I had found a website that accepted stories from young adults with disabilities. On a whim, I turned one of my presentations into an article and submitted it. The site posted it and I liked seeing my work online.

Shortly after, I applied to Scriptwriting, got in, and went in that direction, pitching comics and one-act plays for a while. I kept at it for about a year or two after graduating, then hit a wall. In a moment of boredom, I found the transitioning article that had been published. It inspired me to find a website, Support for Special Needs, that was interested in similar articles. The one article turned into a short series which I kept at for another couple years.

Then came the Joubert diagnosis, which led to more speaking, which led to this blog.

Future plans include a book and probably more submitted articles but, for now, that's the future.

And now my drink's gone and my ride's probably nearby, so I think that about wraps this one up.


Thursday, 17 August 2017

Amazing Arizona

Me and a cactus

Now that all the conference stuff is out of the way, here's the touristy, family vacation part of my Arizona experience!

I said before that the flight down was a little rough, but at least I got to see things like Utah's Great Salt lake and the Grand Canyon on the way down.

As soon as we landed in Phoenix, I was floored by how beautiful, and different, Arizona was. Cacti, palm trees, mesas, adobe houses that looked like they were from the Flintstones. And that was just during the Uber ride to the hotel! If someone had asked me to picture the furthest thing I could from Ottawa, that would've been it. The only negative was the desert heat which, contrary to what a lot of people say, wasn't all that dry.

One of the first things my family and I did on our first night in Scottsdale was to take advantage of American junk food. My sister had been to an In 'n Out Burger on a trip to California and told the rest of us how good it was, so late on our first night, we stopped at one and brought a bunch of food back to our rooms. And it was good! Also, because it was the States, I immediately went for the Fritos Twists and sweet tea.

Throughout the week, when nothing was going on at the conference, we periodically toured around the city.

One day we went to Old town Scottsdale and did some shopping. Very Western-y. Like Prince Edward Island, they had their own dirt shirts, dyed from red-brown clay. I got one of those and a Mexican Coca Cola, which I had been told about by the guy who drove us to the hotel.

It was made with real brown sugar, so it was sweeter and less carbonated than the usual stuff. Very good!

After the conference, we stayed in Arizona a couple extra days so we could really play tourist. Originally, we had planned to take a day and visit Sedona, Winslow (Eagles fans, remember?), and Flagstaff. We left early and headed out from Scottsdale. Just the scenery during the drive was worth the trip!

We stopped at a rest stop and were advised not to go to Winslow. For just a statue, a flat-bed Ford, and some music, it didn't seem worth it and would've been out of our way. Instead, we went to Montezuma's Castle, an ancient, allegedly Aztec settlement dug into a cliff in the desert.

I'm a fan of anything and everything ancient or prehistoric so, to me, this was a lot better than some Eagles thing. The weather was prefect for the short but decent walk around the site. We browsed around the place's gift shop where I got a pretty interesting book. We also got prickly pear jam which tasted great on a peanut butter sandwich!

Afterwards, we made our way to Sedona. First, we stopped at a look-out and took loads of photos of the scenery and approaching storm clouds.

Closest I could get to any kind of Arizona wildlife, javelinas (wild pigs!)

We made it back to our car just as the storm came in. Now, we were in Arizona during their storm season, and it poured every day for at least a little while so we were used to it at this point, but this storm was pretty nasty. We had lightning strike right in front of our car! The sky eventually cleared up a bit and we continued on to Sedona while we could.

In a way, it was lucky for us because the rain had made Sedona's red rock look even redder and we got even more photos.

Waterfall that, according to locals, almost never happens.
We didn't make it to Flagstaff due to flood warnings, but it was still a great day!

For our last day in Arizona, my family went to a place for brunch to celebrate my mother's birthday, spent a long time lounging in the hotel's pool and then went to Hole in the Rock, Papago Park to watch the sunset. Hole in the Rock is a natural lookout point people can walk up to, climb through, and get a really good look at the surrounding landscape.

While my mother and sister went up there, I chose to stay closer to the ground, where I found a Flinstones couch to sit on.

Then, as the sun was setting, my Dad got, in my opinion, one of the best photos of the whole trip.

Just wow!
Leaving for the airport the next day, I was kind of surprised by how sad I was to leave. Had to come to an end eventually, I guess.

That evening, we had a lay-over in Calgary. We met my Uncle Bryan for dinner, who took us on a tour of the city afterwards.

We got home the following evening, and that was it.

Between the state itself and the conference, Arizona was one of the best vacations I've been on in a while. I would go back in a heartbeat, though maybe in the winter when it's not so hot!


Tuesday, 15 August 2017

Phoenix conference Reflections - Feelings of Adultishness*

Turns out I had to put more thought into this one than I expected.

Even though I'm 32 and have done quite a bit, there are times when I still feel like a kid. Case in point, just over a month ago I had gone through a week of what seemed like non-stop disappointments regarding income, housing, and employment. It got to a point where I just broke down and felt incredibly small. Even now, as I'm looking for work again and considering some fairly big changes, insecurities are periodically coming to the surface. But that's why I felt the Joubert conference in Phoenix happened at just the right time. It gave me a massive confidence boost and made me feel like an adult!

Becoming a member of the Board seemed to play a big part in that. First off, I received so many compliments and congratulations because of it, even from people I had met before, but never really interacted with. I also feel the Board membership allowed for a more even playing-field when it came to interacting with the parents who attended.

Speaking of the parents, the conference's Dad's Night was another great adult moment. I'm not a Dad, but it was a fun night socializing with other guys who were my age or older, getting more compliments, listening to goofy stories, and even talking about comics!

Best of all for contributing to the adult vibe was the chance to socialize with other older adults with Joubert syndrome. I've met many adults with JS online and have interacted with several at past conferences, but this time felt different. Like I was with friends. It was a blast just hanging out and, despite several differences, I actually came to admire a few of them for what they're doing, or planning to do in the near future.

As I get back further into routines, daily grinds, and independence-searching, it's good to know I can look back on this year's conference, through memories, photos, or blog posts, and have something so positive to think about if and probably when those insecurities I mentioned start getting too bad.


*Yes, I know that's not a real word but, really, it kind of looks like it should be.

Friday, 4 August 2017

Joubert conference - Phoenix 2017

After a slightly extended vacation due to technical difficulties, I can finally get to writing a post about this summer's JS conference in Phoenix.

This year, we flew out a couple days early, so we wouldn't feel rushed when we got to Phoenix. The flight down was an adventure in itself. Our first flight to Calgary showed me that high altitudes, early mornings, and respiratory issues are not a good combination, but I managed. A brief lay-over in Calgary turned out to be quite fun. Because of accessibility issues, my family and I were able to take a trolley through the airport, which seemed like we were on a tour bus! For the first time ever, I got "randomly selected" and received the full security treatment (yay??). Friendly agents, though. Then, while waiting for our flight to Phoenix, we ended up meeting a younger family from BC who were also heading to the Joubert conference!

We landed in Phoenix that afternoon, and I was blown away by the scenery and how different it was to Ottawa (I'll save all the tourist stuff for another post).

We got to our hotel, The Scottsdale Resort at McCormick Ranch, which was spectacular, and were greeted by friendly faces right away!

That evening, after dinner with our new friends the Willows (the family from BC), we registered for the conference. Again, we were surrounded by good friends who were eager to greet us and congratulate me on becoming the newest board member of the Joubert Foundation (yep, that happened!) And my family got our first official conference photo.

One thing I immediately noticed was how much more social and independent the kids were, especially the older youth. During registration, three teenagers who I've known since the Minneapolis conference weren't the least bit shy about coming up to me and saying hi!

The next day was the first day of the conference. We spent the afternoon shopping to prepare for the rest of the vacation. Unfortunately, I missed the first speaker, one of the teens I mentioned earlier. I did catch up with her and her family later though, and congratulated them. They, in turn, talked me up to a couple other new families which I was grateful for.

Waiting for dinner that evening was a blast, as it meant seeing everyone who had made it in throughout the day.

Seeing all those people was great, but I was most excited to meet and reunite with a couple other affected adults who are pretty good friends, Noldon and Kaci. I had known Noldon since the Chicago conference, and Kaci and I met through the Youth and Adults with JS group I created on Facebook. They had both gotten in touch with me before the conference and it was great to see them and their families!

That night was spent socializing with multiple people in and around the hotel's awesome pool.

Bright and early the next morning, my friend Whitney wanted to get an updated photo of me and her daughter Mackenzie.

 After dinner, the conference hosted a group of researchers who focused on Joubert syndrome and cilia, a major part of the body associated with JS. I was asked to attend as an adult, but was also introduced as a new board member by the Foundation's current and former presidents! It was pretty interesting to learn more about the science and genetics and I liked being able to represent the Foundation and others like myself. In turn, the researchers enjoyed being able to meet affected individuals who could be impacted by their studies.

When the cilia fair ended, I attended the Dad's night. I'm not a father, but a lot of the dads there were around my age and we had things in common. It was a fun night and I received a lot of great compliments!

The following afternoon, I was asked to lead a discussion group for the teens and younger adults similar to the one I did in Chicago. This time was different though. First, I had help. Members of the organizing committee asked Kaci to lead the group alongside me. The attendees really liked hearing about her kids and my inclusion on the board. Also, there was a lot more participation and discussion this time around! Topics like bullying and challenges were thrown around, this time without upset. Some people even brought up questions related to Joubert syndrome, like life expectancy, success rates, and the likelihood of having kids with JS. Gave me some ideas for suggestions for the next conference! We finished the discussion off with several random, fun questions like "favourite colour" and "favourite animal".

Afterwards, many of the teens and younger adults came up to both of us to say thanks, ask other question, and give hugs, handshakes, and high fives. When they all left for their next activity, Kaci and I got a chance to socialize for a bit.

Speaking of socializing, that night there was an adult meet-up at the hotel's bar for adults with JS. I had the idea for it, and the organizing committee okay-ed it. Unfortunately, not many people attended. Some went to the Mom's night instead, others were doing things on their own. Great idea, but I've made suggestions for maybe something a little more formal for next time.

The final day of the conference started with my first board meeting. It felt a bit intimidating at first, but by the end I felt way more enthusiastic and I'm looking forward to contributing to the organization and advocating for others with Joubert syndrome.

The conference ended with the dinner and dance. During the dinner, a video called I Am Joubert, featuring many of the kids and adults (including myself) played. Very well done and great idea!

For my help with the teens and adults, I got a thermos mug and a journal as a thank-you from the organizing committee.

After dinner came the dance and tons of photos.

First up were the official family photos.

Not sure what I'm looking at in these, but it's definitely not the same thing as the rest of my family.

Then came photos with our fellow Canadians.

Martine, the woman beside me in black and white, has been following my blog and other exploits for a while and wanted to get a photo of me and her son, Kayden.

Next up were some photos with fellow affected adults.

Kaci and me. We were both more than a little popular throughout the week, and joked that we felt like celebrities.

The two of us with Meghan, a young woman whose mother was one of the first people I met during my first conference in Minneapolis.

Updated photo with Noldon, who quickly got back to cuttin' a rug on the dance floor.

Was so great to have the opportunity to socialize and become friends with other older adults with Joubert syndrome. Highlight of the conference for sure!

I've written about socializing more with some of the younger parents during the week, so I made it a point to get a few photos with some of them, especially the ones who've been so encouraging with my writing and advocacy.

I may not know much about outfit coordination, but these are still some of my fave photos of the week. Also, Lane (little dude front and centre)!
I was informed this could look like a double date but really, it's just friends.
It also wouldn't be a proper Joubert conference without goofing around with some of the younger folks.

 I met these two cool dudes, Devin and Jaden, along with their parents, at the last conference. Tried to get some photos then but it just wasn't happening. The top photo is the nice one, the bottom's our "fart faces".

More pretty awesome young guys, Sam and Xaviar.

The final photo went to my friend Amanda, who eagerly ran over to get a selfie the second she saw me and Kaci.

I've known Amanda on Facebook for a while, and always enjoy seeing updates on her little girl Karison, who has JS and is super cute! Amanda considered meeting Kaci and me to be one of the highlights of her conference experience, and that is probably one of my favourite photos from the night.

And that was it. The next conference is in Washington DC, 2019 and I've already made tentative plans to see everyone again!

I've decided to do two more posts on Phoenix following this one. One on my many personal thoughts and opinions of the conference, then one for just the general Arizona vacation, so those will be coming very soon.

Until then, cheers!

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!