Warm Flavours

 

Winter has arrived in Ottawa once again. Temperatures hit freezing last week, and snow fell on the weekend, with a major dumping between today and tomorrow.

Readers know very well by now what I think of this season. 

So it's a good thing that I've found myself enjoying many of my favourite southern flavours recently.

 I've been on a ginger beer kick, enjoying it straight or mixed with green tea or ginger ale (both very good!) and found some Mexican Cola the other day. My parents randomly found a guy selling churros (best!) at a market over the weekend. And a new find, Spicy Tropical Fusion Doritos, tasting of pineapple, jerk spice, and cilantro, get two thumbs way up! Also, I still have some real Mexican hot chocolate left from a vacation my parents took.

Maybe it's been a subconscious thing, my brain providing me with a way to cope with the cold and hated precipitation. Either way, I'm enjoying it.

Cheers!

Speaking About Work

 

This guy again

Earlier this week, I spoke as a panelist with others from LiveWorkPlay for a presentation called "Learning From Our Mistakes: Moving Towards Real Inclusive Employment" for the Disability and Work in Canada virtual conference.

I'd been invited to be a speaker a few months ago when I attended LiveWorkPlay's end-of-summer barbecue. 

Over the past month, I'd been in touch with people from LiveWorkPlay, learning more about the event and what they wanted me to talk about, then doing a practice run last week. The practice went well, with the only critique being that I could include more about my background and work history.

The day of the event, there were nerves, but not as much as with past presentations (the virtual format helped a little). There were also technical difficulties with Zoom, which were a little annoying. But, everything settled and corrected itself just in time for the panel to start.

The first presenter was one of the leads of LiveWorkPlay's employment program, and spoke a little about their history, practices, and the relationship between clients, employers, and the organization in respect to accommodations. Very interesting and informative, and nice to hear as a client.

I was up next. 

I was asked to give some examples of times during my employment journey when I've received help from LiveWorkPlay and the job coaches. I spoke about wanting help to ask for more hours with PSPC, landing the job with CanNor, and how LiveWorkPlay helped me get my contract extended to CanNor's Communications branch, emphasizing how much I enjoy the position, and how it is a much better fit with my talents and background. 

As soon as I was done speaking, I immediately thought of something I should've lead with, but that happens...

Other panelists spoke about accommodations, hiring processes, and moving towards better inclusion. Afterwards, there was a brief Q&A with some pretty interesting questions.

The following day at work, I learnt that my manager sent a couple notices about the presentation around CanNor, catching the welcome attention of several senior staff members, which I thought was nice. I was also able to brag a little on a team meeting later in the morning.

A couple little bumps, but things went really well for my first time speaking in almost five years. A huge thanks to the folks at LiveWorkPlay for inviting me to share.

Cheers! 

Harvey X

 

This summer, Marvel Comics relaunched their X-Men titles after a massively successful (and pretty fun) "era" that spanned the last few years. The first issues launched bi-weekly, so for about a month and a half, I bought as many "number 1's" as I could to see what I liked, eventually whittling them down to a couple series.

One of the two or three titles that made the cut was The Uncanny X-Men by Gail Simone. Simone's Secret Six and Birds of Prey for DC were awesome. That and the use of Wolverine, Rogue, Gambit, and Nightcrawler, my four favourite X-Men characters, and sometimes favourite Marvel heroes in general, made Uncanny an easy top choice.

I bought it and started to read. The art was good, a nice continuation from the previous stories, and the first third of the book was a fight between three quarters of the group and a giant dragon, which you can't really go wrong with. The middle of the issue is what got me though.

After a page where a young mutant gets kidnapped by a mysterious figure, the setting shifts to a children's hospital. The X-Men have been asked to meet a young twelve-year-old boy with terminal cancer. He's a massive fan, calls himself Harvey X, and might be a mutant with very low psychic abilities. 

They enter the room, and Harvey is in bed, surrounded by action figures of several Marvel heroes and a poster of Giant-Size X-Men #1 (very meta). He's bolt-upright and super-excited! 

Between panels of Harvey calling Rogue hot and Nightcrawler giving the boy an official X-Men jacket (yay!), Wolverine silently asks Harvey's doctor if he's on a monitor. She say's he's in no danger, but Wolverine, who has superhuman senses, isn't so sure and suggests she call his parents, quickly. At this, I'm just like "No..." and silently pleading for things to be okay. 

Rogue holds the boy's hand which she says feels cold (she can absorb life-force), Wolverine urges the doctor to order a Code: Blue, Harvey goes into a major seizure, blood spurting from his mouth, and the tears start running down my face! The next page, the doctor silently confirms Harvey X's death. The heroes lose it, and so do I. 

But a handful of issues later, Harvey X gets a happier ending. In Uncanny X-Men 5, Rogue is near death after a fight with issue 1's mysterious figure. Unconscious, she's visited by Harvey X who's revealed to be way more powerful than everyone thought he was, with enhanced future sight and healing abilities. He heals Rogue enough to regain consciousness and win the battle, dying for good shortly after, but not before earning the official title of an X-Man. 

Cue some more tears. Happy ones, though!

In almost thirty years of reading comic books, I've never been affected by anything like the story of Harvey X. 

The fact that he's a sickly, pre-teen, superhero fan obviously hit very close to home. But also, Harvey X's story adds one thing I think has been missing from comics lately, especially those from Marvel and DC: genuine heart. 

In my opinion, there's a bit too much focus on making things cinematic lately (NOT a WB or Disney-hater, honestly!), which leads to a lot of emotionless action. Not that action is bad, it's just refreshing to read such a nice, heartfelt couple of character moments, and I sincerely hope the Uncanny team keeps it up going forward.

Cheers!

In Defense of DEI

 

I've wanted to write something like this for a little while now, and since I'm speaking on LiveWorkPlay's virtual panel at a disability and employment conference next week (headshot pictured above!), the timing seems right.

Initiatives related to Diversity, Equity, and Inclusion are a bit of a controversial topic lately, though I personally don't know why?

Programs that fall under the DEI umbrella have helped me for most of my life. 

When I was younger, Easter Seals gave me many opportunities. Their summer camp program allowed me to go to Camp Merrywood, where I was able to spend a couple weeks away from my family, participating in activities like archery, sailing, and whitewater rafting, which I may not have been able to do under other circumstances. Camp also enabled me to meet other disabled youth like myself, some of whom became friends.

When I got accepted to Algonquin College, I linked in with their Centre for Students with Disabilities, setting up accommodations that made post-secondary education easier. I also received help from an attendant services program while in residence, making it possible to live independently.

More recently, I've relied on employment providers like LiveWorkPlay and others that have made it easier to get work, and thus more freedom and financial independence. 

I'm not trying to be political or anything, it's just that many people have been inspired by all the things I've described in this post. These accomplishments have given them hope for what their children, or they themselves, could do some day, and it would be an awful shame if that wasn't able to happen.

Cheers.

A Little Rusty

 

The last time I spoke in any kind of professional manner was about almost four years ago when a medical website was looking to interview someone with Joubert syndrome.

Last week, I presented to my team at work, and saying my speaking skills were lacking would be an understatement. I made out okay, but I was all over the place. I was totally nervous, stammered a lot, and was somewhat forgetful.

I've been asked to speak with LiveWorkPlay later this month as part of a panel on disability and employment. It's just a brief Q&A from the sound of it, but I'm definitely going to need to synch back up with that part of my brain if I want to do well.

Cheers!

A Spooky Story

 

*This is just for fun. Tongue-in-cheek, no offense meant to anyone.*
 
X-Files has always been one of my all-time favourite shows, and a few years ago I started getting it on DVD, partly as motivation for weight-loss/exercise.
 
Halfway through the first season is the episode “Young at Heart.” It involves agents Mulder and Scully investigating a murder in a prison. This eventually leads them to the National Institute of Health and the case of a doctor who, years earlier, had been performing illegal, genetic experiments on children with Progeria in an attempt to reverse the aging process.
 
In and of itself, it's not a very scary episode. However, I was watching this early in 2016, mere months after the Joubert syndrome conference in Chicago. The National Institute of Health (NIH) is a major centre for research of Joubert syndrome and several specialists are regular conference guests. Many individuals, including myself, have been seen or monitored by someone from NIH at the conferences, with some going to the facility for testing. 

While watching the episode, I heard "rare disorder", "children" and "testing", and horror scenarios started playing in my head, involving myself or others I'd only just gotten to know getting microchips, symbiotes, or some other kind of nefarious implant. I stopped the episode immediately and haven't been able to watch it since! Scarier to me than "Home", the infamous inbred hillbilly episode.

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So, I know nothing like this would ever happen in real life. No doctor I've ever met is going "mad scientist" on anyone with JS. It's just the disabled and geeky parts of my brain coming together in a twisted way, and a story I've wanted to share for many years, but haven't had the guts to.

Cheers! 

Awareness at the Office

 

With my manager's approval, I've been using a slightly modified version of the above image as a background for virtual meetings at work this month for Joubert Syndrome Awareness Month. 

I've already had fellow team members ask about it and have been curious about my story, and my manager asked if she could use the image for herself in additional meetings to spread the awareness further to other employees.

Just a quick something worth sharing.

Cheers!