2018 Joubert Foundation Board Retreat

This weekend, September 21st to the 23rd, I had the pleasure of attending the Joubert Syndrome & Related Disorders' annual board retreat, this time in Dallas, Texas.

It was my first retreat with the board, and my first business trip period, so it was definitely a big deal for me.

I left with my Dad, who I was super-lucky to have with me, especially in the various airports I needed to traverse, Friday morning. We were originally supposed to leave Ottawa for Toronto at 9 am but got there early and were able to board an 8 o'clock flight. Lucky, since we later learnt that the original flight was delayed.

Fun-ish fact: This weekend I learnt that it takes less time to fly from Ottawa to Toronto than it does to go from my home to work via Para Transpo.

Anyway, got to Toronto with extra time, took several elevators and golf carts to get to US customs (where an agent was very curious about Joubert syndrome and the Board!), got a bite to eat, and left for Dallas. Props to Air Canada for having free Avengers movies as part of their in-flight entertainment selection!

My first impressions if Dallas were that is was greener than I expected, incredibly humid and, at the time, very wet. That said, it was my first time in Texas which was pretty cool. Also, very friendly people!

Our hotel was very nice and, after checking in and saying a quick hello to a couple fellow board members, I took some time to chill in our room.

We met everyone at dinner, then the Board met for a round table which consisted of me bragging about work, listening to cute, funny, and interesting back-to-school stories,  and joining the discussion about what we wanted to accomplish over the weekend. Afterwards, we retired to the hotel lobby for some socializing.

Saturday was the big work day! While my Dad took some time to site-see, I was with the Board discussing many issues, including what everyone accomplished over the year, Joubert-wise and what we'd like to achieve going forward. For my part, everyone liked my ideas for a scholarship to benefit individuals with JS who would like to go onto college, university, work, or other similar programs, as well as a sort of blog/profile project showcasing adults with the syndrome. I also got a couple really nice Joubert-related t-shirts.

Before the day ended we got a group photo.

I also participated my my first live Facebook video showing everyone what the Board does which was very fun to do.

The day ended with dinner, more socializing and, for my part, enjoying some American junk food!

We had breakfast with several board members who were around Sunday morning, said goodbyes, relaxed in the room for a bit longer, and left for a long day of airports and flights home.

Like most things I've done involving the JS community, the retreat was a great experience, made me feel a little more adult-like, and was pretty fun. Now to get to work on all those fun ideas I came up with.

Cheers!

Blogtober 2018

-TOBER!

A year ago, I did a major writing month which I called Blogtober based on Inktober, where some of my artist friends try to complete and post a drawing per day for the entire month.

Last year, I managed to publish 13 post, with over 2000 views in total. This year, I'm planning for at least 16 posts.

Taking another hint from Inktober, I've tried to make this year go a little smoother with a list of prompts for topics to write about, including something nerdy, a rave, and a few posts to tie in to Joubert Syndrome Awareness Month, also this October.

Should be interesting now that I'm working, but I'm sure I can do it.

Cheers!

Actions Speak Louder Than Your Disability

When I first went to Live, Work , Play for help looking for work, I was afraid that being associated with an organization catering to individuals with intellectual disabilities would cause potential employers to view me differently. When I started this new job, I had the same fears about how my coworkers would treat me.

Now, more than two months in, I realize how stupid it was of me to think like that!

Sure, some people have talked to me in the stereotypical “kid-gloves” way often associated with people with disabilities, and for a while it bugged me, but now it either doesn’t happen or I really don’t care if and when it does. At this point, it’s the work that matters.

My manager always has good feedback for me when I meet with her, coworkers are impressed with the work I’ve been doing, I’m getting asked to do more and more, and there may just be a possibility of getting my contract extended beyond December.

I know some people will see me differently because I’m disabled, and even just a year ago this would have really mattered to me and caused me to hold myself back. What really matters now is that I’m working, people like what I’m doing, and I’m even getting paid for it.

Cheers

Nike and Inclusion

There’s already been enough said about Nike’s new ad campaign to fill volumes, but I wanted to quickly add my perspective.

I’ve seen both the print ads and the new commercial and I have to say I was impressed. The print ad offers a great slogan and message, which is what Nike is sort of known for. The commercial though, to me, was something else. The focus on including people of all different backgrounds is always good to see, but what really caught my eye was the way people with disabilities were portrayed.

Often, (at least to me) ad campaigns spotlighting athletes with disabilities seem to go the sappy, inspiration porn, “Hey, these people are getting out and doing things, isn’t that fun and wonderful?!” route (read this with a sarcastic tone for full effect, please/thank you). Nike’s new commercial shows these individuals, to use the company’s own phrasing, just doing it. And looking pretty cool too. I mean, if you haven’t seen it yet, watch for the bad-ass little wrestler and you’ll see what I mean!

I’m sure Nike could have picked a slightly less-controversial spokesperson than Colin Kaepernick, but they had their reasons and we shouldn’t let people’s Twitter tantrums or videos of burning Nike merchandise distract from what is a truly good, inclusive ad that, in my opinion, is the kind of thing we need right now.

Cheers!

Putting It All Together

I'm almost two months into this job now.

Work itself is going great! I'm doing more, I recently adjusted my schedule with Para Transpo to avoid rush-hour traffic, and just the other day, a chart I created was used in a team meeting (which I was a part of too).

The past couple months though, I've felt like I've been going non-stop. Getting into new routines, setting up stuff like home care and Para Transpo, constantly making sure those things are working out properly and getting on them when they're not. Even shopping for work clothes, which is super-fun when you're short and have issues with zippers, snaps, and buttons. (Tip: find a good tailor/seamstress and be very, VERY, nice to them!) I basically took all of July off just to get things straight.

But, after a couple of months, things seem to be pretty stable. With slightly adjusted hours, I've cut travel time on Para Transpo down from two hours to one, home care is going pretty well, and I've started getting back to joining in previous social activities. So, worth it I guess?

Cheers!