Disabled & Dating (Or Not)

This is one of those topics that I know can be iffy for some, and it’s one I’ve held off on writing about even though I’ve been asked about it more than a few times, both by parents and other disabled individuals. I’m not getting into sexuality or anything overly personal like that, just my experiences and some friendly advice. And I’m not really sure how to ease into it, so I’m just going for it.

I, like a lot of young men, like women. I’ve had, and have, friends who are girls, but I’ve never had a girlfriend.

Had a few crushes in junior high and high school that my parents helped me with, advice-wise. Nothing more than that, really. Maybe the odd slow dance at a school dance but, honestly, I was usually too nervous to even speak to most of the girls I liked.

Further into adulthood, as I got more comfortable with being social, I would occasionally meet (girl) friends for coffee, lunch, or one time, thanks to a poorly attended event, dinner. Some people might call those dates if they wanted to, but they were just innocent socializing (to me, anyway).

I’ve thought about dating, going so far as to join a singles group for nerds in my area. Nice idea, but the only thing that came of it was a group screening of the last Star Trek movie.

Honestly, with the disability and everything associated with it, I’m a little hesitant to date. First, what woman in her 30’s is going to want to come back to her boyfriend’s parent’s basement? Then there’s the potential scenario of me being out with a woman and having a Para Transpo driver walk in and yelling “Pick up for MacLellan!” just as things get comfortable. Sounds real romantic, doesn’t it?

This might sound self-deprecating and even a little rude but, at the moment, I’ve got too many of my own issues to deal with. I don’t want to add any more or put someone else through any of it. I may think about dating again in the future but, for now, I’m in no rush. I’m happy just being single and gaining at least some form of independence.

Cheers!

Can't Is Okay

Around the Internet, especially in those corners devoted to disability awareness, there’s a huge prevalence of things to do with “Can’t/Can Do”. One I find very odd is the statement “There’s no such thing as Can’t.”

I don’t mean to sound rude, but there definitely IS such a thing as “Can’t”!

For example, I CAN’T breathe on more than 75% of lung capacity. I CAN’T run or jump. I CAN’T walk or stand for long periods of time. And so on and so forth. Some of those things I’ve learned a way around, like taking breaks if I’m going any great distance. Others, I just don’t bother with. 

There's nothing wrong with not being able to do something. And sometimes pushing yourself to do that certain something can just be a big waste of time and energy. It’s kind of like a line from an episode of ALF: “Find out what you don’t do well, then don’t do it.”

A wise Melmacian

A lot of what I do now came from not being able to do things growing up. Like, with the running and jumping. That led to, obviously, not being cut out for a lot of sports and more physical activities. Sure it sucked when I was younger, but as I got older, I got into comics, writing, computers, and other current passions!

Don't lose sleep over stuff you can't do. Find things you can.

Cheers

Genomics on the Hill

Last week, Tuesday and Wednesday evenings, I had the pleasure of being asked to participate in the Genomics on the Hill event, organized by Genome Canada.

Roughly a month ago, I had an appointment with my geneticist, Dr. Kym Boycott, who told me about it and asked if I’d be interested in attending as her guest and a patient. Of course, I agreed.

The experience started with a dinner held Tuesday night, with my family in tow, where I met with people from Genome Canada, as well as other participants.

Very interesting group! In addition to health care, there were projects represented that involved growing better kinds of wheat and tomatoes, monitoring caribou herds, and identifying invasive species. While some may have found this a little dry, I was hanging on to quite a lot of it. I became positive that in a former life I must have been a scientist of some kind.

The end of the meal, I coordinated with Dr. Boycott and others about what I’d be doing the following day for the main event.

The next day, after taking a cab from work, I arrived at Parliament Hill, location for Canada’s federal government, for the Genomics on the Hill reception. Since I was early, I sat and waited in one of the building’s rotundas.

I went back to the room just as they were finishing setting up the room. I met people from the previous night, as well as some new people, found where I was supposed to be, and casually took a few photos of the room.

We were conveniently, and thankfully, right next to the bar!

Because science!

Shortly thereafter, people started coming in, including Parliamentarians and representatives from other genetics groups. Dr. Boycott was in a meeting, so I was CHEO/Care4Rare’s point of contact for the first half hour of the event! I thought I handled myself pretty well, speaking to people about CHEO’s Genetics clinic, Care4Rare Solve, a new initiative to provide better diagnoses for patients with rare disorders, Joubert syndrome, and the Joubert Foundation.

Care4Rare poster

Dr. Boycott arrived just as things got really busy. She was soon followed by others from CHEO, including the CEO of the CHEO Research Institute and other doctors and employees of the Genetics clinic. A great relief for me, since I was starting to get tongue-tied.

Halfway through the event, heads of Genome Canada spoke and briefly gave shout-outs to the presenters around the room. Then, ministers responsible for science, innovation, and other areas spoke about Canada’s current political climate, in relation to topics presented at the event. Not as fascinating to me as the science, but still pretty interesting.

What followed was more visits by people interested in Dr. Boycott and/or myself. Highlights included an older gentleman who had approached us earlier in the evening, had to leave in order to vote on an issue, then came back to hear more about Dr. Boycott’s research and my life experiences, as well as a young woman interested in genetics who was also very interested in reading my blog!

Before leaving, I got a photo taken in a photo booth set up for the event. Very fun!

Genomics on the Hill was an absolutely great event. Very glad to have been invited and given the opportunity to represent both CHEO and the Joubert Foundation, get the word out, and put a human face to what both organizations continue to do!

Cheers

Branching Out

I’ve been thinking about expanding my social media presence, both personally and as The Rare Writer.

Shortly after the CORD conference in March, I was made aware of a similar event and organization, HealtheVoices. HealtheVoices puts on a conference focused on storytelling and social media as they relate to health and advocacy. It looks like something within my wheel-house. One thing they recommend, almost require, is that applicants have a strong social media presence.

I created a rough social media plan to sort out what I’ve got already and what more I could do.

I have the blog, several articles floating around the Internet, and am active on Facebook with the blog, Joubert syndrome stuff and, of course, my own page. I want to go bigger, though! I’ve been debating with myself for the past while whether or not to create a Twitter account for the blog. I’m leaning towards “Yes”, and recent events have made me think I should get back on there myself, though it’s been a good few years.

HealtheVoices also likes applicant to submit videos when applying, something I have zero experience with myself. Recently, the Global Genes website has started an initiative asking people within the rare disorder community to upload short videos of themselves. This might be good practice for later!

There are other platforms to explore, but for now I’ll stick to what I just wrote until I’m comfortable with everything. As always, I’ll be sure to write more if and when things develop.

Cheers!

Bucket List

Been going through some writing prompts today. Thought I'd post this one.

We all have our bucket lists, a list of things we absolutely want to do before we, well, can't do them anymore. (I could've said 'die', but that would've just been depressing)

Here's mine!

1. Visit prehistoric locations

Specifically the Royal Tyrell Museum and Badlands in Alberta, as well the George C Page Museum and La Brea tar pits in California. I've mentioned before that I'm a nut when it comes to dinosaurs and all things prehistoric, so this is a major desire and probably the most achievable item on this list.

2. Attend a major comic convention

San Diego would be the ideal, but I'd settle for New York, Chicago, or any other big con.

3. African Safari

This is the big one! I've always wanted to do this. Any place would do, but I've heard there's a preserve in South Africa that's located right between Cape Town and a World Heritage Site that's said to contain the highest number of discovered remains of human ancestors, so that would be awesome!

4. A Tour of England

Maybe the whole UK, but England for sure. I'd love to see Stonehenge, the Globe Theatre, the British Museum and Museum of Natural History and as weird as it sounds, walk through Whitechapel (location of the Jack the Ripper murders) and/or the real Sherwood forest (Robin Hood).

Cheers!

Part of the Audience

I speak about my disability quite a lot. I enjoy relating stories of when I was younger and helping or encouraging others.

Within the last few years, I’ve found myself playing audience member while other people, mostly within the Joubert community, speak and share their stories.

I’ve written about speaking alongside my friend Noldon at the 2015 JS conference in Chicago, and unfortunately missing out on seeing Abby, a young woman I’ve known for some time now, get up with her parents and speak at the conference in Phoenix.

This time, I want to share a presentation (click link, please! )from a much younger individual with JS*.

As part of a Joubert syndrome Awareness day put on by her school for JS Awareness Month, Leyla Swenson gave a presentation to her Grade 4 class about Joubert syndrome, talking about the syndrome, how it affects her, and about the conferences and some of the friends she’s made through them. I’ve known Leyla and her family since attending the JS conference in Minneapolis in 2013, and I really enjoyed this video. She did a great job and has an awesome perspective on her disability at that age!

Speaking will always be fun, and I appreciate the fact that people still want to hear from me, but I’m starting to like being a listener myself and sharing the wealth. The more, the merrier, right?

*Thanks to Leyla’s mom Jenni for letting me include her video

Cheers!

Disability on YouTube

I'm on YouTube a lot!

Mostly, I enjoy live music, video game walkthroughs, and uploads of older documentary series and cartoons.

Sometimes though, I like searching for videos related to disability. Over the years I've found loads, including a small but awesome number of videos related to Joubert syndrome (one or two of which I'm in). I've recently started subscribing to certain channels which I enjoy, learn from, and can often relate to.

TED Talks

While not specifically focused on disability, TED Talks has had a few interesting videos by disabled and able-bodied speakers about communication, inclusion, technology, and even futurism that have included bits about various disabilities.

Invisible I

This channel was created by a young woman from the UK on the autism spectrum, and I follow it regularly. Unlike other disability videos and channels that go too far one way or another into the inspirational or controversial realms, this woman talks about issues and topics like travel, working, attending conferences, or just posts vlogs about various different quirks and traits she has. Things I can actually relate to and which have inspired a couple blog posts!

Special Books for Special Kids

Created by a special ed. teacher Chris Ulmer, Special Books features Mr. Chris interviewing individuals of all ages with a number of diagnoses from autism and cerebral palsy to cancer and Huntington's disease to Alzheimer's and PTSD. He's even met a couple people with Joubert syndrome! (sadly though, no videos as of yet)

The videos of the little kids are some of the best. Most of them are very cute and steal the show, and Chris is great with interacting with them.

Some of the older individual's interviews have hit home pretty hard and I've actually reached out to comment on a video or connect to an interviewee on more than one occasion, whether it's been to encourage a young guy wanting to pursue a future in Paleontology (which I considered at one point) or to quickly say hello to a young woman and fellow advocate who wanted to hear from people.

Another frequently watched site!

I'm currently debating whether I want to make a video or two of my own. A lot of nerves associated with it, and I'll write about it all later. Maybe I could find some inspiration re-watching some of those videos from above?

Cheers

Haven't Done This In A While

That's a stock photo up there, but it sums up what I was up to this afternoon.

For the first time in many months, I was back in my favourite coffee spot in downtown Ottawa, enjoying an iced coffee and banana bread, writing in the blog.

With work, I had to stop these regular writing days. I meant to start scheduling the odd one here and there to just get out, but never got around to it.

Feels so good to do this again.

Cheers!

The Week of Much Bussing

I probably could've wrote this post last week, but with the holiday weekend, it just slipped my mind.

Last week set a record for the amount of times I've been on a city bus in a week. Three trips, one both ways and, as a bonus, most were during rush hour! One of those trips was intentional, another regrettably necessary, and a third was spur of the moment.

The first outing was just a typical trip to downtown Ottawa and back, making the most of a day off with nice weather.

The second trip, later in the week, was an unfortunate necessity because of a screw up by Para Transpo. This turned into a three-hour tour of a bus trip home, preceded by a cab ride from work, and nearly two hours waiting outside work before that. Also, it was raining, because things had to suck just a little bit more at that point!

The last and best of the week's bus-related experiences happened on Thursday afternoon. Ottawa had been graced with some unusually summer-like weather and, still seething from my last foray, I decided to cancel my ride home that afternoon, push home care back about an hour, and get a cab downtown for a few hours to enjoy the late afternoon. I even experimented with a slightly different route which stopped right inside my subdivision, so I had a shorter walk home than usual.

Just a unique, fun and, at one point unfortunately, nutso experience I felt needed to be written about.

Cheers!

Here Be Dragons

“Here be dragons.”

That’s what ancient sailors and explorers would write on maps and tell others when faced with uncharted territory. Any location they were unsure of undoubtedly contained monsters.

This is the point I’ve reached now with work. This week marks the longest I’ve ever been in a job or vocational environment, like the placement I did a couple years ago! I was volunteering with the treatment centre for three years, but I’ve never actually worked longer than three months.

I won’t be running into any sea rhinos, manticores, or other great beasts over the next several months and beyond, if and when I get my contract renewed, there will more than likely be a fair amount of challenges like schedule adjustments, winter weather, and of course issues with Para Transpo (all of which I’m working on already!)

But I can tame those dragons when they show up. For now, I’m just impressed that I’ve made it this far.

Cheers!

What I'm Thankful For

This weekend is Thanksgiving here in Canada and, this year, I have a lot to be thankful for.

Today specifically, I'm thankful for the premieres of Doctor Who and The Walking Dead so I can avoid football.

On a more serious note, I'm thankful for a (so far) busy year. That includes, first and foremost, a job. Then comes conferences, comic conventions, book clubs, volunteering, home care, and the list goes on and on. Wow!

Nothing more to say, really. Just felt like writing this down.

Cheers

Mutant and Proud

I am a mutant.

Not that kind of mutant, the fun kind, but I am one just the same.

I can't read people's minds, fly, or control the weather, but I can curl my tongue, rhyme off semi-useful information about dinosaurs and Star Wars characters (no small feat, I assure you), and I used to be able to do this:

As mutants go, I'm pretty average-looking. No fur (though I am kind of hairy), blue skin, scales or spikes. Mainly just a bump on my left hand left over from a sixth finger.

Not as cool as a set of Adamantium claws, but still a decent conversation starter

I do share one thing with those other mutants though.

Shortly after learning about my "gift" seven years ago, I was welcomed into a group of others with similar mutations.

I haven't yet battled any giant robots, jetted off to the Savage Land, or been played by Hugh Jackman on the silver screen, but I did meet a whole bunch of folks similar in age to me while at a resort in Arizona last summer, so that's pretty awesome.

This mutation is something I was born with. I think I've done a pretty decent job living with it for thirty-three years now and, like those other Marvelous mutants, I'm using my gifts to help others like me understand theirs a little better, and provide a positive image for all the "normals" out there who might not understand.

Cheers

Toastmasters

This afternoon, I attended a Toastmasters meeting on my lunch break at work.

I'd been planning on checking out Toastmasters for a couple years now, to see if I can upgrade my public speaking skills.

I saw a poster advertising the club couple weeks ago at work and decided to email the guy in charge. He told me a little about this chapter and encouraged me to attend a meeting.

I got a reminder about it in my email this morning and was lucky that it synced up nicely with my lunch.

This particular meeting consisted of only four people, counting me, so it was nice and informal. After asking me about my background, both with speaking and with work, the head Toastmaster told a few jokes to get people comfortable and asked one of the attendees to pick a "word of the week."

After that, there were "Table Topics", an informal speaking round where each person in attendance talks for a minute or two about a specific topic or question. This meeting's was "Talk about a memorable city you've visited." I chose Scottsdale, Arizona and talked about being wowed by it's deserts, complete opposite environment to Ottawa, and sites like Montezuma's Castle. After listening to the other attendee's answers, which were very entertaining and informative, the head Toastmaster delivered his speech as part of the meeting's main speaking portion. It was a little longer, more detailed, and had many good visual aides to it. When he was done, he asked others to critique his speech, then he did the same for the rest of us.

It was definitely worth it to attend. They were a friendly and encouraging bunch and I'm looking forward to doing so again in two weeks, when they next meet. 

Cheers!

It Begins!

This year's Joubert Syndrome Awareness Month Facebook frame

It's October 1st, which means both Joubert Syndrome Awareness Month and Blogtober have begun again!

Along with regular posting whenever I can, I've decided to try and schedule a writing day for at least one day of every weekend this month in order to compensate for working and to keep to my goal of at least sixteen posts by the 31st.

I'm also planning to use this month as an excuse to expand my social media presence, something I've been considering for a while now and will probably write about later on.

And that day one done!

Cheers