The Christmas Post

This year's Christmas post coming a couple of days early this year because I'm flying out to Nova Scotia tomorrow evening for a couple days to spend Christmas with much of my family. Should be fun!

Haven't been feeling the Christmas spirit all that much, but it should find me before the big day.

I'll try and post some things when I get back so, until then, Merry Christmas to everyone!

Cheers!

Well, This Sure Hasn't Been Fun

Getting shingles isn't my idea of a good time.

I noticed them about a week ago, and didn't know what they were. Saw the doctor Monday, it took her all of two seconds to diagnose.

Got medication for the virus, some sort of hot pepper cream for the pain, and some Advil for the killer headache caused by the shingles hitting a nerve.

I attempted work on Tuesday, which I shouldn't have. Hard to sit, headache non-stop, and terminally-watery eyes from the aforementioned head issues. At least I got a free breakfast that morning!

Stayed home the next day, which I was able to book off at work today, thanks to some new benefits (new adult stuff, yay!!).

I finally had a full night's sleep for the first time in about three days last night. Not sure if the sores are better or if I just found that one small part of my mid-section sans discomfort.

A much better day at work today, and that brings me to right now.

It never fails that this time of the year, mid-October to early December, something with me goes wonky, health-wise. A cold, surgery to get ear tubes replaced, or shingles now, apparently. Oh well.

Seems like the worst may be over (fingers crossed!)

Cheers

Pre-winter Preemptive Strike

Well, the snow is back in Ottawa.

It happened yesterday during the wee hours of the morning, continued as a mini-blizzard later on (perfect timing for the ride to work), and ended early in the afternoon.

I knew it was coming, having replaced my sandals with boots the night before just in case, but it still deflated me just a little.

Before conditions get too bad, or I get too mopey, I’ve come up with a plan to stave off most of the winter blues.

I’ve decided, and cleared with my manager, to work every second Friday until Christmas to make up a couple days I took of earlier in the fall. The alternating Fridays, if I’ve got nothing going on, I’ll take as a reading day, booking Para Transpo to a nearby spot to just get out and relax for a bit. I may continue the reading days into the New Year, too, just for something to do.

Seemed to work last year.

Cheers!

2019 JS Board Retreat

This past weekend was the Joubert Foundation’s annual Board retreat, held this year in Chicago, at the same hotel where they had their conference in 2015.

Like last year, my Dad went with me, which I grateful for, especially after foolishly thinking I could maybe go it solo. 

We left early on Friday, and landed in Billy Bishop airport later that morning. Very nice! Smaller, very accessible. None of the insanity of Pearson, where I've flown out of before. 

From the gate, we were taken directly to a lounge for US departures. After two hours, which was exactly long enough to enjoy a snack and finish a sizable comic book, we left for Chicago.

Midway in Chicago was a little bigger, but still pretty easy to get around. A very long Uber ride later, and we were at our hotel. Upon entering, memories of the Chicago conference 4 years ago started flowing back: the entrance a young friend eagerly followed me into on the first day, the hallway where my mother lost it after seeing one too many little guys like me, and the auditorium where I first physically met, and spoke alongside, another older guy with JS!

Anyway, back to the present. After getting to our room, I immediately went to the hotel’s shop and bought a massive bag-full of American junk food to enjoy over the weekend! A couple hours of unwinding, then I met the rest of the Board for our first meeting to discuss the weekend’s events and what people were doing. I described my idea for a fun way to profile adults with Joubert syndrome, which everyone liked. After that, we went out for dinner.

This being Chicago, dinner meant deep dish pizza! The restaurant, Giordano’s, was across the street from the hotel. Fellow Board members were quick to offer assistance with hills and curbs and other uneven bits of terrain along the way. My Dad arrived shortly after we got there.

So good!

Four years ago, I barely made it through one slice of Giordano’s deep dish pizza and a couple one-bite appetizers. This time, I enthusiastically devoured a small portion of salad, a slice of a very good thin-crust Bruschetta-style pizza, and a whole deep dish piece of the best meat-lovers pizza I have ever had! Good conversations were had, plenty of leftovers were divided among various Board members, and then we proceeded to leave, with food comas causing several of us to call it a night.

Saturday was the big work day. It started with a good breakfast and gifts of a comfortable JS pull-over and a new travel mug.

The day’s events were guided by a team of facilitators, who organized several activities to help us define visions, goals, and tasks for the next years of our respective tenures, and for the Foundation in the years beyond that.

Throughout the day, we each got to have our pictures taken, for professional headshots. A very interesting experience! When everyone was done, we gathered for a group photo, which turned out nicely.

At the end of the day, as we were wrapping things up, one of the facilitators, who incorporates art into her work, did up a video for us, sort of a visual representation of the day’s events and accomplishments. 

Very cool to watch!

That night’s meal was out to a fancier Italian place, which was followed by some socializing, outside because the weather was amazing!, then hugs and handshakes goodbye when we were all tired.

Another quick couple flights Sunday, and we were home.

I had such a great weekend. The retreat made me feel like I was making a contribution and that I was a genuine part of something. As always, thank you to my fellow board members for including me, helping me out, and including my Dad in the nightly activities. Looking forward to keeping up the momentum built over the weekend and doing it all again next year.

Cheers!

What Inspires Me

I’ve been called an inspiration, or something similar, more times than I can count by people within the Joubert community. In six years, it’s never gotten old.

What people may not know; however, is how much these same folks, and/or their kids, inspire me.

I love going on social media and seeing photos, videos, and posts from people, whether it’s parents or individuals sharing their personal stories, major milestones of kids and older individuals, or just the everyday, random goofiness that’s good for a laugh.

I enjoy seeing the young kids doing things for the first time, including feats that I wasn’t able to accomplish until much later in my life or still can’t do, like cartwheels, running a mini-marathon, or even walking up a flight of stairs without holding on to the railing.

With the older individuals, especially those who I’ve come to know personally, it’s news of independence that I look forward to. School photos and updates, travels and outings, advocating for themselves, or even things about their own families are personal favourites.

These all inspire me and motivate me to continue to do what I’m doing.

Cheers!

Platypus

Here's a fun, random story I often tell when speaking, perfect for JS Awareness Month.

My very first word was platypus.  Not dog, cat, Mama, or Dada. Platypus!

It took me longer to speak. Sign language was used a lot, but no words.

 When I was little, I would often need chest physio and/or a nebulizer mask to help with breathing issues. Doctors had told my parents to get into a regular routine with this, so they decided to do it while watching nature programs like Nova or National Geographic.

Even though I couldn't speak, my memory and other cognitive abilities were fine, so after routinely being exposed to TV shows about animals, out came "platypus" one day, at random! At least, that's how the doctors figured it happened.

Just something I thought people might enjoy.

Cheers!

My Own Worst Critic

Last night, I watched the video of the presentation (this one) I gave at the Joubert conference in Minneapolis six years ago.

It was my first time watching it in quite a few years and, right away, I had serious thoughts.

First thing I noticed was the sound of my voice. I've never liked hearing it! In this particular video, it sounded so nasally and, frankly, kind of whiny. I actually had to ask my mother (my parents were watching it too) if I really sounded like that.

With the self-deprecation out of the way, there were a lot more positive things I picked up on.

Watching this video, six years later, I noticed how much my speaking has improved overall. There are a lot less umms and uhs, I don't ramble as much, and I can now properly end a speech/presentation. I don't apologize when I mess something up, and I've learned to tone down the corny jokes.

I also picked up on several of my favourite topics that would feature prominently in future speeches and blog posts, like comics, college, taekwondo, and Easter Seals Camp Merrywood.

My presentation ended then it was time for questions, and there were a lot of them! In response to one about when I started speaking, I got to share what I'm now calling the platypus story for the first time, how that was my first word after being exposed to nature shows for so long, which was fun.

In the midst of questions, I was also payed a very nice compliment by a young woman with JS I had met earlier that morning when she and her mom joined my Dad and I for breakfast. I had forgotten all about that, so it was very nice to hear again!

It was interesting to watch myself, even if I was a little too critical of myself at times, and would be a fun exercise to do in the future should I ever be recorded again.

Cheers!

My Why

Why am I involved with all this Joubert syndrome stuff (conferences, the board, writing/speaking, etc.)? That was one of the questions posted during the countdown to JS Awareness Month.

When I was diagnosed eight years ago, I really didn't care for Joubert syndrome all that much. In fact, after doing some research, I was kind of scared off by the fact that there were so many kids who were so different and so much younger than me.

Over the next two years, I linked in with the JS Foundation and joined the online community, but I still did my best to avoid things related to the syndrome.

It wasn't until the summer of 2013, when I was asked to attend and speak at the Joubert conference in Minneapolis, Minnesota, that my opinions about JS started to improve. A huge part of that was actually physically meeting families and individuals with Joubert syndrome. I heard their stories, and shared mine, and suddenly I was noticing similarities and things became more personal. Then that led to social interactions, which led to people asking me to become more involved in the community, which led to me wanting to be involved!

This brings me back to "Why?" I'm involved with the JS community for the social interaction, experiences, and the opportunities to give back to people like me.

Since the Minneapolis conference, I've met loads of other adults with Joubert syndrome, some of whom have become good friends, and a couple I've had the pleasure of meeting in person thanks to other conferences, which is a big deal when you're in Ottawa, Canada, and they're around places like Phoenix, Denver, and Cleveland.

Though it doesn't necessarily have to do with the syndrome itself, the conferences and my position on the Board have allowed me to travel to many great places I never would have ever thought of going to otherwise, like Dallas, Phoenix, and Chicago.

With travel, good food comes too.

I want to go back!

And maybe most importantly, being involved in the Joubert community has given me the chance to advocate for people like myself. I've spoken at other conferences, attended events here at home, led discussion groups for youth and other adults with JS, started this blog, and I'm now a member of the Joubert Foundation's Board of Directors.

So that's my Why, and also Blogtober 2019's first official post.

* If you'd like to learn more about Joubert syndrome, visit the Foundation's website at jsrdf.org

Cheers!

October is Everything Month

There are way too many good things happening this October, and it's only just the first day!

The two big events, the ones most important to this blog are Joubert Syndrome Awareness Month and Blogtober 2019.

Like the previous two years, I'm going to try to at least work on something blog-related every day this month. I've made myself a list of prompts as well as a few specific posts I have in mind. In keeping with JS Month, a lot will be related to that but this time I'm not aiming for a specific amount of posts. I tried to go further than 2017's 13 posts last year and found myself struggling, so this year it's quality over quantity

I've got a retreat coming up later in the month with the JS Board, so there'll be a post on that.

Tons of fun stuff too, like a Grilled Cheese Fest here in Ottawa this coming weekend, which should be delicious. This Fall's Ottawa International Writer's Fest looks to have some great events, so I may try and get out to a couple of those (if I can successfully traverse the construction nightmare to get tickets...). And a nice Autumn weekend at the cabin for Thanksgiving in a couple weeks. Can't forget Halloween too!

All this plus several of my favourite shows returning to television, just in time to ignore football!

Cheers

Riding The Rail

This afternoon, my Dad and I took Ottawa's new light-rail (LRT) from one end of its two lines to the other and back.

After many delays, the new system opened to the public a couple weeks ago. Since it will be replacing certain bus routes in Ottawa's downtown area, including the one I use frequently, I wanted to try it out, with assistance, before that takes effect.

We got the regular bus down to the new, very accessible station (complete with stairs, escalators, AND elevators), waited for a few minutes, then boarded one of the cars. Very easy to get on and off of! This was one of the things I was curious about, having had issues boarding and exiting other light-rail systems before, but the entrances are level, the train itself is fairly slow and not jerky at all.

The ride itself was nice and smooth. I kind of wanted it to go a little faster, but that's really just a nitpick. The stop I would be getting off at if I wanted to go downtown is just about a block away from where the bus currently stops, so walking won't be an issue.

We could have stopped there, but we wanted to see the rest of the route. We stopped at a station with one of the largest escalators in a light-rail station, so I definitely WILL NOT be using that! Closer to the line's end, one of the stops was at a shopping complex called Silver City, which contains a major movie theatre my family and I would often go to when it was more convenient to travel that way. With this new light-rail route, that might be possible again.

Dad and I made it to the end of the line and went all the way back. It was an enjoyable trip, and one that I'm confident I could do on my own next time.

Cheers!

Back to School: My College Experience

For my last Back to School post, I want to write about one of the achievements I get the most compliments for and questions about: going to college.

I've already written a couple articles about college and accessibility and some of the services I got, so for this post I want to stick to the experience itself, specifically during my first two years.

My college experience started in 2003 when I got accepted into Algonquin College's General Arts and Sciences - Pre-Media & Communications program!

With that done, I needed to find a place to live. At the time, we lived in a small town about 45 minutes from Ottawa, so I got into Algonquin College Residence, right next to the school. My parents were still able to come in to help me if I really needed it, and the residence had an attendant service program for disabled residents, but except for a roommate, I was living on my own. And that took a lot of getting used to!

In the first week and a half alone, I slagged a pot of rice when I put it in the microwave with no water, stinking up the apartment, drenched my clothes after failing to adjust a shower nozzle, and locked myself out of my room. Lessons were quickly learnt.

On the bright side, living mostly on my own meant I had my own TV, could stay up later (when classes permitted), and eventually, got used to spending longer periods of time away from my family.

College classes were an interesting experience. Algonquin's General Arts and Sciences was kind of like going to university without actually going to university. I took classes like Creative Writing, Psychology, Film Studies, and Presentation Skills, all of which were fun, and most of which, in hindsight, came in handy much later than they probably could have.

Socially, I got along great with my first two roommates, who I had met at summer camp years earlier, a couple mutual friends who came over periodically, and a few people I knew from high school. No immediate class friends though for most of the first year, just people-watching and lots of books and DVDs bought at the campus stores. During my second year, I started to relax and be friendlier. A Group Dynamics class made me some friends and lead to my first outing in Ottawa without my parents. It was to a bookstore, and I still talk about it every time I go by the place!

The end of that year was my first time on a bus and in a bar. My roommate and I decided to go see a movie one weekend, so we took the bus. He was in a wheelchair, so the driver thought I was his attendant and let me on for free! Later, I went to a bar in downtown Ottawa for a grad party. Fun time, but wasn't really my thing.

I think that pretty well covers everything! In the past few years, I've heard more and more of the older families and individuals I know within the Joubert community talk about how they or their kid is going to college, applying to college, or thinking about college, and it's honestly one of the topics I like hearing about the most, because I know what an impact those two years, and subsequent stints, had on me. I seriously hope, going forward, that more young adults, not just the ones I know, can have that same experience.

Cheers!

Back to School: Making Friends (or Not)

In my early school days, I had several friends. We'd play at recess, go to each other's houses, and celebrate birthdays.

But, when I was in the fifth grade, around ten or eleven years old, I was bullied pretty badly. Suddenly, the socializing stopped. I was still sociable, but I didn't have any friends.

Aides and even my parents would push me to be social, saying things like "Just go play!", or scolding me for reading a book during recess, or even making sure I was sitting with someone at lunch. This just annoyed me, and made me want to withdraw myself even more. I know they had the best of intentions, but it still bugs me, thinking back.

Over the next couple years, I stuck to myself a lot in school and at home. This was when I started getting into comics, writing, drawing, and other passions. And, even though I wasn't very social in school, I still did things outside of that environment.

The year I was bullied was my first year of Easter Seals Camp Merrywood. It was also around the time I really started to like Taekwondo. A few years later, I would start playing sledge hockey and going to a couple teen groups organized by the children's hospital I went to. The bonds I formed through these groups have lasted WAY longer than those made with anyone I ever went to school with!

As I got further into high school, the interests and hobbies I had picked up while not having friends were what helped me meet people who liked the same sort of things I did. The ability to pick my own courses during my senior years was a big help too, for much of the same reasons!

It's great to be social and have friends but, if you find yourself struggling at some point, it's not the end of the world. Find what you like to do, and eventually you'll meet people you fit in with, and who want to fit in with you!

Cheers

My Bucket List Redux

A while back, I posted my bucket list. A lot of great ideas, but I've come to realize that some items may not be realistic.

See, I don't really have the "constitution" to go on flights longer than three hours or that go higher than a certain altitude.

This considered, I've decided to revise my bucket list to make it more continental.

I still want to see the La Brea tar pits and attend a major comic con like San Diego, but I think attending the Stratford Shakespeare Festival here in my own province of Ontario would be a lot nicer on my wallet and other parts of my body than flying all the way to England to see the Globe theatre.

New additions to the list include the following:

L'anse Aux Meadows, Newfoundland

The first and only Viking settlement in North America. I love history, really like Vikings and that whole time period, and I've never been to Newfoundland, so could be fun!

A week touring The Smithsonian

During the JS conference in Baltimore, I went with the family to DC for an afternoon and walked by several buildings within The Smithsonian's campus. Unfortunately, lines were well out the doors, so we couldn't go inside. I'd love to go back, take a week, and see as much as I can, especially the Natural History building, which now has a Deep Time exhibit dedicated to prehistoric life.

Eat my way through a State Fair

What you see there is a pickle-brat, a bratwurst, stuffed in a pickle, then deep-fried like a corn dog. Next to that is deep-fried Coke. I want them both.

Maybe I've been watching too many shows like Carnival Eats and Bizarre Foods, but for the last little while I've had the urge to eat my way through a state fair (most likely Syracuse, New York, since it's only a few hours away.) No rides, maybe the odd attraction, but definitely all the food!

Cheers!

Back to School: Inclusion and Exclusion

All through school, teachers did their best to make sure I was included.

I took French until the tenth grade. In Grade 6, it was common for students to go on a trip called Ecole du Neige (that's Snow School in English), a couple-day retreat to a camp where students spoke French, stayed overnight in cabins, and participated in outdoor, Wintry activities.

During the first parent-teacher meeting about the event, my parents, aide, and a couple other teachers were nervous about me going, but my French teacher, who was also leading the trip, advocated for my inclusion and said he'd find ways to accommodate me. I went, and most activities like game nights and snow fort building contests I did with everyone like normal, but for things I just couldn't do, like snowshoeing, I got to go snowmobiling, with my French teacher driving (he just wanted to do it, and I was his convenient excuse!)

In the eighth grade, my Gym teacher and aide coached the Boys' basketball and three-pitch teams. Since those were two sports I needed a lot of accommodations in order to do, my teacher came up with a clever way of including me. With her and my aide, I would act as assistant coach of both of those teams. I was tested on rules, had to attend the same practices and events, and had to follow the same conduct as the other players. 

Sometimes though, especially when I got into high school, exclusion had more benefits than inclusion.

All the accommodations in the world weren't going to prevent me from getting a dodge ball to the side of the head because I couldn't move quick enough. Same thing for games like rugby or floor hockey. 

And when I started to do exams and in-class essays, it wouldn't  have been fair to the teachers and other students who were concentrating on their work to have to hear me dictating to my aide, so doing these things in a separate, quieter room made more sense. 

Inclusion and exclusion. Both have their advantages and disadvantages. It's all up to personal preference. 

Cheers!

Maybe Don't Call the Disabled Activist Disturbed?

I don't usually post about things in the news, but this was a story that caught my attention yesterday.

Greta Thunberg is a sixteen-year-old environmental activist from Sweden. She is also autistic.

Andrew Bolt is a conservative journalist for an Australian newspaper.

About a month ago, Bolt mocked Thunberg in a column, calling her disturbed, a reference to facial ticks and movements. She was immediately defended by autistic individuals, as well as disability organizations like The Mighty. Thunberg, to her credit, seemed to shrug off the insult.

A grown man insulting a young woman would be awful enough, but picking on her disability as well is just pathetic. And "disturbed?" Such an archaic term. He might as well have called her hysterical or possessed.

Another aspect of Thunberg's autism that was attacked, was the tendency for people with the disability to fixate on things. This was used to question her activism. First of all, another cheap shot. Second, If this girl is going to fixate something, I'd say environmental activism and climate change are pretty damn good things to fixate on. It's called being passionate about something. Maybe people should, I don't know, encourage her.

I'd encourage Bolt to stop, or the publication he works for to do something, but upon seeing an article from just a few days ago about "Thunberg's child army", I don't think that's going to happen.

Fortunately, Greta Thunberg is now in the US, still sticking up for what she believes in.

Cheers

Back to School: Technology

I’m frequently fascinated by stories of individuals with disabilities using technology to further their education. Videos of valedictorians using assisted communication devices to deliver their grad speeches or university students using the same programs to defend theses leave me speechless.

Parents, and even younger individuals, often ask me what I used in school and share about their aides of choice. Things have definitely changed since I started school!

To assist with writing, I was trained on a computer from about six years old in the first grade. Each day, we had to write something in a journal. While everyone was writing in theirs, I would go to a computer lab with my aide and type mine. I’m not sure about the other kids, but my journal entries almost always detailed some fantastic story about monsters, prehistoric beasts, or cartoon and video game characters coming to life!

Case in point

Around Grade 5, I started using a computer for more serious work like book reports and other assignments. Two years later, in junior high school, I was given an electric type writer to assist with my work. I took it between school and home, and was responsible for getting my work printed before class. Failure to do so meant no work, which meant a detention, so I got in a habit very quick!

In high school, I was the first student in the area to be provided with a laptop (the Acer pictured above), which would help with homework and many essays. This was in 1999.

At the time, some people thought that would give me an unfair advantage. On one hand, being the only student in the entire area with such a device, I can sort of see where they were coming from. On the other, the laptop’s contents included Word, Excel, PowerPoint, an Encarta CD, Pac-man, and Dig Dug, and not much else, so it wasn’t like I was going to be able to hack into the school or anything.

I did receive a couple “upgrades” over the years, though: my Art and Comm-tech (think computer art/design) teachers convinced the school to provide me with Corel Draw, and as a reward for getting good grades one years, my parents bought me some Star Wars game demos! That’s right, DEMOS!

Later in college, I got my own laptop (with much more on it than the last). Many of my teachers used eLearing and uploaded notes, presentations, and documents to an online location, so I didn’t need to worry about writing all that much. I did experiment with Dragon Naturally Speaking, a program that converted my speech to text in a document. Fairly useful for assignments requiring info-dumping, but not for much else, at least in my experience.

That's the gist of my technology story. Pretty dated stuff by today's standards, but I guess I was a pioneer of sorts. If this was twenty to almost thirty years ago, it'll be interesting to see how much tech develops in the next couple decades.

Cheers!

Back to School: Aides

Looked up "Aide" in Google

Part one of the Back to School series, which will now include more posts, because more ideas!

Going through school, I needed a fair bit of assistance. Most of that assistance came in the form of an aide.

Starting all the way back in Grade Primary, I had a full-time, one-on-one aide help me out through the school day. When I was little and couldn't do as much on my own, my aide did a lot, like helping me on and off the bus, do school work, and even assisted with walking. As I got older, the help became way less physical.

I had many aides throughout my schooling. My family still gets Christmas cards from my first. The aide I had the longest was from Grades Three to Seven. This woman went from literally holding my hand to walk when she started working with me to smirking after I'd have lunch with a girl in junior high.

In the eighth grade, my parents and I decide to go with a male aide because of things like gym class and other issues where having a woman with me would have been uncomfortable. Someone who was less of a "Mom" figure.

In high school, help from my aide came mostly in the forms of carrying books and scribing for me, since I tended to hold my breath after writing for long periods.

On the first day of my last year of high school, Grade 12, I ran into some issues. Just mere moments after getting to my locker, my aide told me that the school wanted him to assist full-time with a resource room, which meant I would be on my own. Not wanting this, I spoke with the school's senior guidance counselor about my situation.

One of the perks of being a disabled student was that over the summer, I was given an opportunity to organize my classes for the year, within reason, to avoid stress and over-excursion. I worked it out to each semester consisting of two heavier, more academic classes, a lighter class, and a free period. Going with this, I was able to work it out so that my aide was with me for the two academic classes, and would help me with extra things like exams or going on college/university tours later in the year. I would be on my own for the free period and other classes. By the middle of first period, the issue was fixed!

College was different when it came to personal help. I experimented with using a note-taker, and made use of assistance with exams when I had them but, ultimately, technology proved to be more useful and I was able to do much more on my own.

Cheers

Back to School Series

The Rare Writer is going back to school!

Not really, but to kick off the start of the school year, I want to write a couple of posts about some of the school-related things people have typically asked me about over the years, like having an aide, what subjects I liked and didn't, or about being included in classes and activities.

I also want to do an entire post about college. Not about everything, but about the experience of just being in college.

Looking forward to doing this over the next (hopefully) couple of weeks. Stay tuned!

Cheers.

Handicapped Space: Melora

A little while ago, I wrote a post about disabled characters in science fiction movies and programs, and why there's probably a lack of them.

I've recently started binge-watching Star Trek on Netflix. I'm up to Deep Space Nine, the franchise's third series and my favourite. About halfway through the first season, I found the episode that's inspiring this post: Melora.

The episode's title character is Melora Pazlar, a Starfleet ensign newly-assigned to Deep Space 9. Melora's species is from a low-gravity planet, meaning that in "standard" gravity, she's disabled and requires aides like crutches, a wheelchair, and walking-frame.

The episode starts with DS9's main crew ensuring that the station meet's Melora's needs. Ramps are being installed and barrier-free quarters are being set up. Apparently the Cardassians, the species in the show that built the space station, weren't big on accessibility.

During a quick brainstorming session, the crew even propose the idea of Melora beaming from place to place via the station's transporter (as in "Beam me up, Scotty") as a means of getting around. An idea that I, as a physically disabled Star Trek fan, would have died to see!

The rest of the episode mostly involves Melora trying to do things on her own, putting people at arm's length, then accepting help from members of the crew, including Dr. Bashir and Dax, the station's medical specialist and science officer. Melora and Bashir even form a relationship.

There are a lot of the same tropes and cliches associated with many disabled characters, like bitterness, ableism, and acceptance, but done with a sci-fi twist. The best part, in my opinion, was the transporter bit, but another stand-out scene was one where Bashir develops a treatment (cure) for Melora that would enable her to walk unassisted in standard gravity environments. She's excited at first, but eventually decides against it, saying that the cure would forbid her from ever returning to her home planet and would technically make her a whole separate species, not human, but also not her own.

Reading more about the character and episode online, I found a couple interesting little trivia bits:

•  The actress who played Melora prepared for the role by taking a wheelchair through a shopping mall
•  The writer who created the character was disabled, and drew on his own experiences during the process
• Although she only appears once on-screen, Melora figures more-prominently in Star Trek novels set after the TV shows and films

I've said repeatedly in this blog that whenever I find something that combines disability with my various geeky interests, there will probably be a post about it, and since Deep Space Nine is one of my all-time favourite shows, this was just plain fun to watch and write about.

Cheers!

Joubert Conference - Baltimore 2019

It's been just over a week since the 2019 JS conference in Baltimore. I would've posted sooner, but work and stuff.

It was a fun week, filled with family, friends, and lots of good American junk food!

Since Baltimore was within driving distance, my family left pretty early the Wednesday morning of the conference. After a decent nine-hour trip, we made it to the hotel, which was conveniently located in the middle of Camden Yards and Baltimore's Inner Harbour so there were plenty of things to see and do over the week!

I made it just in time to see the end of the My Life With JS presentation which, this year, was being done by two younger guys, one of whom's family I've known since the Minneapolis conference six years ago. Very well done, from what little I was able to sit in on.

After that, we met some people and had dinner with a few of the other Canadian families in attendance. We would make a point to stick with our fellow Canucks as much as possible throughout the rest of the conference.

After dinner, the family registered.

As you can see by those ribbons, I had lots to do during the week, acting and volunteering as a board member, and leading another discussion group for the older youth.

Speaking of those folks, after registering, I was asked if I wouldn't mind visiting the area set aside for the older JS individuals and socializing for a bit. Right away, I was greeted with lots of big hugs, high-fives and handshakes. Now, I've known most of these people (can't call them kids anymore!) for several years, and this conference I was impressed by how much more mature and sociable everyone was.

The conference's first full day started off with a group session about adults with JS led by my parents, with me attending as their visual aide and sounding board. It went very well. Lots of people, great discussions, and sharing of resources. I got a lot of nice complements over the next few days, even though some of those were directed at me and not them. Still though, I was very proud of them both!

When that was done, we had the rest of the day off, so we went out and toured around Baltimore's Inner Harbour. Very nice area!

There were lots of ships, including restored vessels and submarines that are now museums. There was an aquarium which was a big draw for a lot of the conference's attendees, and a really cool-looking Ripley's Believe It or Not. There wasn't enough time to see it all, but I would absolutely make a return trip for it.

We boarded a water taxi to take us to the other end of the harbour. There, we toured around and took some photos

Long before the trip, the one thing the family had agreed to do was crab, which is famous in Baltimore. So, while walking around, we found a small restaurant that served the city's delicacy.

I can't speak for my parents or sister, but my eyes were definitely bigger than my belly! They had everything. We got crab cakes, tater tots with crab dip, crab cake sandwiches, and I got a crab pretzel, a giant pretzel topped with crab dip, crab meat, and cheese!

Between the awesome food, Colonial-era building, and reggae music, I could've stayed there all day! But, we went back across the harbour and did some shopping. I got a couple shot glasses (which I collect), some chocolates from a fun little sweet shop, and what looks like a pretty cool book of Edgar Allan Poe stories.

The next day was my day to do stuff. After an early breakfast, I took the morning to relax. That afternoon, I led a discussion group for the teens and young adults with JS about successes and challenges. Like before, it was fun and lots of people participated, but this time everyone there seemed more engaged and the conversations were a bit deeper, with some people bringing up issues like dating, bullying, and feeling left out at school and with friends. One girl actually asked if everyone could talk about one thing that makes them sad, which is what led to the discussion about bullying and feeling left out. Such an awesome group. I was pretty floored, to be honest!

That evening was a Dad's night and Adult social, so my Dad and I got a bite to eat at the hotel's bar beforehand. There were a couple other families there, as well. While we were waiting for our meals, the young son of a friend of mine came over and showed me something he had just drawn. Being a fan of superheroes, he also wanted to talk to me about all the latest Marvel movies. He said he liked the usual popular heroes like Thor and Wolverine, but then surprised me by liking Shang-chi, a fairly lesser-known character set to appear in Marvel's next phase of movies. It was pretty cool!

After dinner, my Dad hooked up with some of the other fathers and went out. I went to the Adult social and met a few people, including a young woman I had met after my parent's session the day before. It was fun, and we connected at breakfast the next morning.

The last day of the conference began with various Board member duties. First a quick meeting where new members were introduced, then a general meeting where conference attendees got to meet the Board, learn what we've been doing, and ask questions or make suggestions.

After this, my family went to Washington, D.C. We drove a little and got a subway train to the city.

Honestly, the subway was probably my favourite part of the whole excursion.

We got to D.C. and walked around. It was incredibly hot that day and there was a lot of walking so admittedly, I wasn't in the best of moods. Still, we did see some pretty neat sites, like the US Capitol building, Washington Monument, the White House, and the Smithsonian, which I really want to go back and see, properly!

I WILL be back for you!

That evening was the dinner and dance. Beforehand, we got our family photo and one with many of the Canadian families.

A bit of dancing and a lot of socializing. My father introduced me to a group of young couples from Norway, Denmark and Estonia (he had met some of the guys during the Dad's Night). They were all super-friendly and talked about reading my blog. So, shout-out to any new European followers out there!

Said all the goodbyes, got a Pepsi and relaxed, and that was it.

The next conference is in Seattle, which would be great to attend but is already looking a little expensive, so we'll just have to see.

We took our time coming home, so we could stop at Hershey, Pennsylvania. We used to have a Hershey's chocolate plant not too far from us, so it was really exciting to go.

Hershey's Chocolate World was nuts! For one, it was packed. Two, so much chocolate! I loaded up on all kinds of Reese Cups, as well as Payday bars which I can't get here in Canada.

The family went on a tour, which seemed pretty standard at first, but was actually an interactive amusement park-type ride with all sorts of characters. Very fun!

We took the next day to shop in Syracuse, New York, and made it home that night.

Once again, another great conference and vacation.

Cheers!

My Rare Disease Playlist

*Warning: This post contains course language. Song titles only, but still.*

I was reading a blog post the other day about a young woman’s rare disease playlist, uplifting music she listens to when she needs a “boost.” Mostly Top 40 songs by artists like Taylor Swift, mixed with a couple of Christian groups to reflect her faith.  

Nice stuff, and reasoning behind her selections, but the author’s tastes are definitely nowhere near my own.

When my disability, for whatever reason, is getting me down and I feel like listening to music, I don’t want anything light or inspirational. I prefer tunes that are either loud and hard or goofy and irreverent. Mild profanity is acceptable in either category!

With so much music to choose from, I thought I’d go through everything and combine the best dozen into my Rare Disease Playlist.

1. Anything by Pearl Jam

A constant favourite! All their stuff is good, but their early, grungier stuff is best for this list.

2. Anything by Nickelback

Specifically songs like “Never Again” and “Burn It to the Ground”, played loudly.

3. Yoda by Weird Al Yankovic

Star Wars song for a Star Wars geek.

4. Asshole by Denis Leary

Best song ever! And, no, the “handicap faces” line doesn’t bother me.

5. Iron Man by Black Sabbath

6. Fields of Athenry or The Warrior’s Code by Dropkick Murphys

7. Istanbul by They Might Be Giants

Funny, and best when it was done by Craig Ferguson

8. Dammit by Blink 182

9. Various cartoon and TV themes

Favourites include The Raccoons, Denver the Last Dinosaur, The Addams Family, and

DuckTales. 

10. Whisky in the Jar and/or Enter Sandman by Metallica

More loud stuff!

11. Hell’s Bells live by AC/DC

Mostly for the intro

12. The theme from the Mortal Kombat movie

Fight!

I could easily go on and do another dozen of these, but I think I'll stop with this selection.

Cheers!

One-Year Work Anniversary

Google Images rarely disappoints

Time for some bragging.

It just dawned on me that, as of today, I've been working for one full year!

At one point, I never thought I'd be able to say that.

There have been some really tough days, like today for example, but it's been a pretty enjoyable (and financially beneficial) experience with, overall, minimal hassles.

My contract's in the process of being renewed for at least another year, so it looks like I'll be keeping at this employment thing for a while longer.

Cheers

My Week As A Pin Cushion

What a week!

Along with the usual work/Para Transpo/home care routine, and a JS Board meeting, I had two doctor's appointments which ended with a total of three needles!

Monday, I had a follow-up with my geneticist. She was about 90% sure she had zeroed in on my causative gene (as related to the Joubert syndrome), but she wanted to clear up that last 10%.

One way of doing this was for me to give a skin sample through a biopsy. I've had people asking me to do this for the past six years at Joubert conferences, but have always refused. For no reason at all, I offered to do it this time.

The first needle of the week was to freeze part of my right arm, so a chunk of flesh could be cored out of my arm, then dropped into a sterilizing solution. With all the preparation for it, the biopsy was more tense than painful, but now I have a better understanding of the less-than-happy reactions of the younger kids to the procedure when it's done at the conferences.

The next needle was a blood draw that was part of a new test the Genetics clinic had begone to use. The test was fairly new (I was the first person to have it done), and involved them looking through RNA, rather than my DNA (<< major over-simplification). They needed two vials of blood from me that were then mixed with some kind of solution that turned it jet black. Hope to hear results soon.

The third and final needle was a pneumonia vaccine given to me at a respiratory check-up.

I hadn't seen my respiratory specialist in over a year, and in that time things had gotten bad. Part of it was from being sedentary at work, but a lot of it was just from me getting lazy and complacent. My breathing test this time was pretty bad, and my doctor was concerned, he put me on some medication but mostly told me to be more active. He also advised me to get a pneumonia vaccine. He's offered it to me before, and I've refused because I don't care for needles. But this time, because of a bout of pneumonia I had in the Fall, and a nasty bug going through my house, he pretty much told me to get it. Sort of like a flu shot. A little pinch and tenderness, but okay.

Very crazy few days, but no pain, no gain, I guess.

Cheers