2017 Year In Review

2017 was a pretty good year for me. Lots of potentially good connections made, the blog saw a lot of action, and I had one of the best vacations ever!

2017 was pretty good to me in terms of professionalism. I got a lot more help with looking for work and even had a couple interviews. Nothing yet, so hopefully next year will be better employment-wise!

Lots of advocacy and networking opportunities this year. In the winter I spoke as part of a panel to social work students at one of the local universities, I attended quite a few Ottawa-based events for networking and public speaking, and in the summer I accepted a spot on the Joubert Syndrome and Related Disorders Foundation's Board of Directors.

This year had me writing. A lot! I managed to crank out over fifty posts here on the blog, the most since I started four years ago. A lot of that was because of Blogtober, a wacky idea I had this past October, which happily coincided with Joubert Syndrome Awareness Month.

The best part of the year was definitely the JS conference in Phoenix, Arizona! Not only was Arizona one of the nicest places I've been to (and am currently missing thanks to snow and polar temperatures here at home), the conference was a blast! New opportunities (like the Board position), good friends, and a great hotel made it one of the best vacations I've been on in quite a while!

And that's about it. Looking forward to whatever next year brings.

Cheers and Happy New Year!

Merry Christmas!

Given my last post about wanting to be someplace warm for the holidays, that image seemed appropriate.

Wishing everyone a safe, fun, and hopefully not-too-chilly Merry Christmas!

Cheers

My Christmas For A Beach

Sorry for sounding like a Grinch, but I'm just not feeling it this Christmas.

Maybe it's the extra long annoying wait for Para Transpo this afternoon, but right now, I'd give up the vast majority of presents I may get to be anywhere else, preferably someplace warm where, within reason, I can come and go without worrying about things like ice, snow, or Para Transpo.

Ideally with a swim-up bar and free Coke, like here!

Like back to Montego Bay, Jamaica. What a great Christmas that was!

No snow, no obligations. Just relaxing.

This was our view outside:

This was our Christmas dinner:

No boring old turkey and spuds here!

Even Santa was a change of pace!

Just feeling nostalgic and complainy, I guess. I'm sure I'll get over it in time for next Monday.

Cheers

Homes

Here's a wacky idea that will probably never happen, but I wanted to write about anyway: Why don't we modify some senior's complexes to accommodate individuals with disabilities.

Get rid of the concept and stigmas of nursing homes, group homes, and the like, and just create facilities for anyone that requires extra assistance and wants to live relatively independently.

I've been thinking about this for a little while now. My grandmother is getting older and getting to the point where she can't live independently. My mother has told her about a few places, including one close to us. Upon hearing about the services offered at these various locations, my grandmother was hesitant, not wanting to leave her house. I, on the other hand, would've jumped at the chance if I was the right age. These places had home care, recreational facilities, individual apartments, and the one by us was right next to a major shopping centre (complete with restaurants, a bus station, and movie theatre!)

I've also read quite a few stories about young adults with disabilities winding up in senior's facilities because there are no other age-appropriate options, and often resorting to filing human rights complaints to try and get some assistance.

That's what made me think. What if that age-appropriate environment was already there?

We build all these different facilities for disabled people, some of which can be run-down and require the individual to go through lots of red tape and waiting before getting in. We also create service organizations for those people, yet put a ridiculous amount of requirements and restrictions on those services in order for one to obtain them (speaking from some experience here.)

Wouldn't it be great if everything was in one place, and everyone was able to get the help they need and enjoy their lives in the process?

I know it'll never, ever happen, but wouldn't this be something awesome?

I can only dream, I guess.

Cheers!

A Volunteer Opportunity Appears!

Very fortuitous that I logged into my email yesterday. Not only did I find out an Amazon order I had placed shipped a little early, but I got a request for an interview for a volunteer opportunity I had applied to.

A little while ago, one of the people I'm seeing for employment help suggested looking into volunteer opportunities, both for experience and to keep my resume current. Initially I had been hesitant, since I was adamant on looking for paid employment, but I decided to go for it anyway. Almost immediately after creating a profile with a local volunteer website, I found a part-time position with an organization that promotes sailing for people with disabilities. I applied, and just heard back from them. They sound interested and would like to meet some time this week!

I'm still going to look for paid work, that's priority one, but I've been looking for a year now, trying to find the perfect thing to fit both my interests and needs, which is really, really, hard. So at this point, I'll take whatever I can get. The position's within the overall disability field I'm interested in, it's something to do, and could get me out of the house for at least a little while.

For now, an opportunity is an opportunity.

Cheers!

The Boy With The Beard

Surly, hirsute, teenage goodness. 

I've always been pretty short for my age. It's partly to do with my disability (something about limbs, growth, and mobility). Over the years, especially in adulthood, it's resulted in quite a few funny and strange encounters with people.

For the record, I have no problem with people asking me things related to my disability, or having people look at me. Little kids seem to do it a lot. It can be a little creepy, but mostly it's just funny.

In my mid-teens, I decided to grow a beard. Guys in my classes were doing it, and I kind of wanted to fit in a bit and look "cool." My mother was never too keen on it. Looking back, it's almost awesome to think that, with all the issues and differences, I still managed to do something in my teens that one of my parents wasn't exactly impressed with.

Anyway, one day I was walking around town, running some errands. I walked by a little boy and his mother. As I walked past, I heard the boy turn to his mother and say "Mommy, that little boy has a beard!" When I was out of earshot, I laughed out loud. I could've been embarrassed but, fifteen years old, 4'9", and hairy is a pretty weird combination, so I couldn't fault the kid. Still a funny story.

These days, I'm a little taller and a lot less bearded, but that doesn't stop the looks (even more so from kids) or the odd question. Recently, I was actually asked by a guy if I was a "giant dwarf". Yeah! Part of me was kind of offended, but then I realized that what he called me made absolutely no sense and was a total oxymoron anyway. I just said no, and moved on. Some people are just strange, I guess.

I know there are a lot of parents and individuals in the disability community who don't like being asked questions and who are uncomfortable with stares, and that's totally okay, but these stories have kind of shown me that most people are less rude, and more curious or weird. Rather than being upset, I choose to indulge the former and ignore the latter.

Cheers!

The Good Doctor Is Pretty Good, I Guess

A while ago, I wrote about my rather negative opinion of new show The Good Doctor.

After reading a pretty nasty opinion piece on an other disability website that made mine look absolutely glowing, I decided to give The Good Doctor a second chance and watched an episode.

While it's not something I'd get invested in, the show was pretty good. The autism stuff is a unique hook and Freddie Highmore comes off as a  pretty good actor. In general, it's a decent medical drama.

I think what got me so riled up in the first place were the previews and initial reviews. The previews seemed to focus too much on the lead's autism and reviews were kind of sappy, going on too much (in my opinion) about inspiration. Too many bad disability cliches.

The truth is The Good Doctor is just a show and I jumped the gun and was maybe too quick to judge.

Kind of glad I was wrong.

Cheers!

The Waiting Game

They say "All good things come to those who wait." Well, whoever those people are, they obviously have never had to deal with accessible transit, housing wait lists, or any other service for disabled people.

Example: Today, I met a friend to see the new Justice League movie. The pick-up to the theatre was fine (pretty early, but there was a Starbucks within walking distance so no big deal), and the movie was awesome! It was the return trip that was the problem.

I phoned Para Transpo after the movie to check the drivers ETA and was told about 25 minutes. Para Transpo comes with a grace period of half-an-hour on either end, which I understand. And normally, I'd be okay with waiting around, but not this time. My friend needed to catch a bus (most people I know understand Para and will occasionally wait, but I'm also understanding when they need to leave), it was getting cold (November in Canada, eh), and I didn't want to stand outside a theatre for nearly 30 minutes looking weird. Thankfully, I only live about ten minutes away, and my Dad was able to pick me up.

But this has happened before, only with no response from Para and no family nearby (cabs and a disability pension can be a pretty good combination in a jam.) Luckily, this kind of scenario hasn't happened too often.

Whether things work out or not, it's still a waiting game and it sucks. One of the reasons I carry a novel everywhere I go.

And if waiting for Para Transpo is annoying, then the waiting game for housing is downright painful! I first went on a waiting list for accessible housing in Ottawa in 2009, just after I was accepted into Scriptwriting. When my family and I were settled in the city, I went on another list for more locations. That's almost eight years, the better part a A DECADE, waiting on a list! Once a year, I phone in to check my status, usually to no avail. Every two years, I get asked to update or confirm my interest so they can keep my account active. The average wait time is about twelve years, so at least I know I may get an answer before I turn 40...

As with Para, it sucks but at least I've got my family who are willing to help and help me look for alternatives.

I understand waiting for medical things (consults, procedures, etc.) can be a pain too, but I haven't had much experience in that are, so I can't really go there.

So yeah, waiting sucks royally. There are a lot of screwed up systems and services out there. But, there are also some things I'd rather have than not so, with varying amounts of patience, I'll just keep waiting, looking for any alternatives I can, and always with my nose in a book.

Cheers

So. Many. Ideas!

I've been on a bit of a self-imposed blogging break since last month's Blogtober, focusing on looking for work and trying a couple new social things.

Now I'm trying to write again and I've got SO MANY IDEAS!

Really. At the moment, there are about four drafts on here, each with five sentences or less. I found a website full of fun, quick writing prompts which, hopefully, should give me enough creative juice to sift through at least a few post ideas and get them on here.

So, many posts will hopefully be on here at some point in the near future.

Trudging onward.

Cheers!

A Misdiagnosis Is Still A Diagnosis

Having been diagnosed well into adulthood, it can be easy for people to assume that I went almost 26 years with no answers regarding my health and disability.

While it's true that the Joubert syndrome went unnoticed for that long, even when it was noted on an MRI, I did still have an answer.

For 26 years, I had cerebral palsy or some form of it. It's what doctors noted on my files, what teachers and school staff heard in IEP meetings, and what I used to get various services and participate in disability-related activities. In hindsight, it wasn't an accurate diagnosis, but it was one that fit and made sense at the time.

Yes, there were things that didn't mesh with a traditional cerebral palsy diagnosis, but most of those things were either fixed (extra finger, crossed eyes), or just dealt with as best as possible (frustration, leaning). The important things is everything was handled, regardless of what I was diagnosed with at the time.

So, while finally getting the Joubert diagnosis was great and has made a huge difference, going 26 years without it wasn't all that bad, either.

Cheers!

JS Awareness Month/Blogtober - Looking Back

Well, Joubert Awareness Month and Blogtober are officially over, and I'd say they were both huge successes!

JS Awareness Month went over very well, with many people contributing in their own way.

The Joubert Foundation surpassed their fundraising goal of $31 000 in 31 days! Some people shared daily facts, photos, or stories about their children. One friend of mine, whose little girl has JS, collected and shared 65 stories/photos of affected individuals, myself included.

For my part, I was able to crank out 13 posts on the blog this month thanks to Blogtober, with 2145 views in total. 1543 of those views went to Joubert and disability-related posts!

Blogtober proved to be a pretty good experiment and kept me busy for most of the month. Definitely something to do again next year.

Cheers!

JS Awareness Month - Friends

I post a lot about adults with Joubert syndrome. There are many reasons for that, the most obvious one being I am one. And as an adult with Joubert syndrome, I feel it's important to make it known that there are many other adults like myself out there with this rare disorder.

I've connected with quite a few of those adults over the years, but I wanted to save this final post of Joubert syndrome Awareness Month to show off some of those folks who I feel have become friends and were awesome enough to let me include them in a post.

*Photos and inclusion used with people's permission*

Johan, from Sweden. Johan was one of the first adults I connected with shortly after I was diagnosed. A pretty big movie fan, he's currently going for his Masters in Internet Security.

Crystal, from Washington State. Crystal and I met shortly after she was diagnosed with JS, when her mother reached out to people on social media. My father told her about me, then she and I connected. Within minutes of that, Crystal and I were chatting and quickly became friends!

I've used the photo at the beginning of this post several times before, but they're pretty great people so it's being used again. Left to right, we have Alex, from Florida. Met him at the conference in Chicago after my presentation. We connected on social media soon after and like a lot of the same movies and TV shows. On the other side of me is Noldon from Ohio, who I've mentioned a few times on here already. Then there's Erika from Saskatchewan. Erika's one of the few Canadians I've met with Joubert syndrome, is always a good source of encouragement and a quick chat, and has recently started an internship.

Kaci, from Arizona. Kaci and I connected through the Youth and Adults with JS group I created on Facebook and quickly became friends, often chatting about books or whatever. We met in person at the Phoenix conference, where we led a discussion group for the teens and younger adults in attendance.

When I was diagnosed, I knew Joubert syndrome was rare enough that the chances of meeting someone like myself would be few and far between, and I was okay with that. That's why getting to know these awesome people, and others like them, is always so great!

Many thanks to each of them again for allowing me to include them in this post.

Cheers!

Life Below Ground

This past August, my grandmother came to visit for a while. Since she's not well, my mother thought it would be best for her to stay in my room. It's on the same floor as my parents and sister, close to a bathroom, and the stairs are easier to climb. That meant I was able to stay in our basement.

I did this for a little while last Christmas, and it was pretty fun. Had my own space and was able to do things after my grandmother went to bed. That lasted for just under a month.

This time around, my grandmother stayed for about two weeks. Originally, I was going to move back to my room a day after she left, but my father wanted to go to our cabin that weekend so I stayed for a couple more days. Then a couple days became another week. That turned into a month and now, as of this week, I'll have been staying in our basement for three whole months!

It's a pretty nice space. It's furnished, with a living room area and TV. We sectioned off part of the area to make a small bedroom which is nice too.

Mostly, I just like the feeling of having my own space that's far enough away from the rest of my family, without actually leaving home.

I may move back to my room soon, especially with the colder weather coming. On the other hand, my grandmother's going to be here for Christmas, so I may just stick it out until the new year!

Cheers

Enough With The Nazis

No way was I using that other symbol

I've tried to think of a nicer way to spin the following post, but I can't. Deepest apologies if it upsets anyone. Here goes...

Why can't humanity get it that the Nazis weren't a good thing?!

I can't and won't begin to understand the political climates of other countries. I also realize that people are entitled to their own beliefs. However, I can not get over the seemingly global current obsession with a group that did so much evil!

As someone with a disability, it's a little sickening to see the resurgence of a belief system that ultimately lead to people like myself being thrown in gas chambers.

On the one side, you've got people openly wearing and carrying around swastikas like it's no big deal. On the other side, you have any group or individual who does something remotely hateful being labelled as Hitler or a Nazi. While that may seem like an appropriate comparison to some, it's still a pretty big stretch given the things the Nazis actually did. Also, it just creates more Nazis, so stop it. Just ignore them, and they'll hopefully go away!

It's not my place to totally understand what's going on in the world, but can we all please just show each other a little more respect and kindness?

Cheers!

JS Awareness Month - Rare Writers

No, that's not a typo up there.

With this being Joubert syndrome awareness month, I wanted to put some other JS-related blogs in the spotlight. Many of them have been kind enough to mention me, so it only seems right to do the same for them!

Mack's Mom by Whitney Steele

Whitney started Mack's Mom in 2011, shortly after her daughter Mackenzie was diagnosed with Ocular Motor Apraxia (OMA) and continued it when Mackenzie was diagnosed with Joubert syndrome the following year. In 2013, Whitney attended my presentation at the Joubert syndrome conference in Minneapolis, connecting with me shortly after. That fall, a video of my presentation was included in a post Whitney wrote about the conference. Mack's Mom continued until earlier this year, with Whitney hoping that someday, Mackenzie might tell her own story.

The Unexpected Journey by Anna Dietzen

I first heard about The Unexpected Journey in 2014, when Anna was looking to share the stories of people within the JS community. I sent her an email and she posted my story. Since then, I've been an avid follower of Anna's blog, which focuses on her family and the lives of her boys Parker and Lane, who both have Joubert syndrome.

The Journey Ahead by Stephen Mack

Though I've only just started following this blog, I've known Stephen and his family for quite some time now. Most posts in The Journey Ahead are about Stephen's family, especially his daughter Isabella, who has Joubert syndrome. Looking forward to following this one.

Embrace Positivity by Noldon Starks

Those who've followed my conference posts will be familiar with Noldon as a friend and fellow adult with JS. I started following Noldon's blog two years ago after we mentioned each other in posts about the Joubert conference in Chicago. Since then, I've followed his many posts, which are about a number of subjects and usually end with a very positive message.

Thanks to the author's for allowing me to share glimpses into their various stories. 

Cheers

Review: Defying Doomsday

It's not too often disability collides with my various geeky interests but when it does, it's always exciting!

I heard about this book a few months ago and ordered it the second I was able to. Defying Doomsday is "an anthology of apocalypse fiction featuring disabled and chronically ill protagonists, proving that it's not always the fittest who survive."

I have to admit, when I saw the words disabled and apocalypse in the same sentence, my first thought was "The Walking Dead with wheelchairs. Cool." While that in and of itself would've been enough to pique my interest, I was surprised when the book contained nothing like that at all!

Instead, the stories in Defying Doomsday feature individuals with a wide variety of impairments like spina bifida and hydrocephalus, arthritis, autism, and schizophrenia, and look at how they cope in equally varied apocalypse and post-apocalypse scenarios such as alien invasions, acid rain, extreme drought, and even a world besieged by giant spiders!

The story that I feel showcases both disability and the apocalyptic setting the best would be the book's first, And The Rest of Us Wait, about a former pop star with spina bifida and hydrocephalus who's forced into a bunker with her family and others when part of Europe is threatened by an asteroid strike. When the impact happens, she forms a band to entertain the bunker's other occupants, while dealing with pain caused by a lack of access to medication and implants (the future!) made useless by a power-out, and facing other's concerns that her disability will hinder her should they ever return to the surface.

Probably the best part of the anthology, in my opinion, is a story featuring a war correspondent with cerebral palsy, who has a communication device implanted in her skull (seriously, the future!), protecting a fleeing spaceship from hostile aliens. Just writing that is amazing!

Not every story in Defying Doomsday is so uplifting though. Some can be pretty dark. Like one about a family afflicted with cystic fibrosis travelling through a nuclear war-ravaged landscape to a hospital hoping for a lung transplant for one of their daughters, only to find out on arrival that the
hospital was shelled. Or a story about a woman with autism whose lack of social skills, fixation on her cat, and strict adherence to routines cause her to let a former bully die in a downpour of acid rain.

Overall, Defying Doomsday was a great book to read, and I'd definitely recommend it.

Cheers!

Life After 24

Several days ago, I was writing my "story" for a Joubert Awareness month thing. While doing so, I had made a comment on social media that writing your story is pretty hard when there's 32 years of it. A friend of mine directed me to something he had written for help. It wasn't quite the same as what I was doing, but it did get me thinking.

The piece my friend had written was called "Life Begins at 30". As I was reading it, I realized how much my life really took off at the age of 24.

When I speak and write, people are always amazed by how independent I am and by how much I've done but, the more I look back, the more I realize that I never really started doing things on my own until age 24. Sure, I had been in college but beyond going to the occasional movie or class function, I never really went out and did anything. Even when I did, it was usually always there and back, no lingering or extra socializing, and God forbid I be out after 11 pm! Even within the area of the college and residence, I never really strayed that far. Ten minute walks in either direction, either to the grocery store or to a McDonald's. Beyond college, my sphere extended almost exclusively to my family and what they were doing.

It was only at 24 that I started to branch out and try things on my own. The summer after my 24th birthday was the first time I even thought about travelling anywhere on my own, booking a flight to spend a few days with my grandmother.

That was also the year I went back to college for Scriptwriting. Maybe I had been emboldened by my solo trip to the Maritimes, or maybe it was the people in my class, but in Scriptwriting I was 100% more sociable. Rather than stocking up on books and dvds and hiding in my room, I was frequently participating in group activities, going out more, and even staying out late! My geographical reach expanded too. I got Para Transpo and made good use of it when I could, and started to walk far beyond my previous comfort zone.

I moved into the city the following year, which helped me maintain my newfound independence and drive. I started to go further into the city on my own, first with Para Transpo, then with a regular city bus. One-way trips, driving home with my parents quickly evolved into two-way trips on my own when I got comfortable. Socially, I was quick to find opportunities through my frequent visits to local comic shops, attending game nights, group events, and conventions.

I continued to fly down to visit my grandmother during the summers, but soon I was looking for something else. After much planning, my parents were comfortable with me traveling on my own, by train, to Toronto and staying through the weekend for the Toronto Comics Art Fest.

It's only been relatively recently, too, that I've started staying on my own for longer periods!

So, I guess the message here is not to worry if you don't feel independent or like your not doing things right out of the gate. Do things at your own pace, don't worry about what others are doing, and be proud of whatever it is you're able to do whenever you can do it.

Cheers!

Been Busy

Blogtober took a bit of a hiatus for about a week due to a lot of different things happening all at once here.

Aside from some fun and travels over the Thanksgiving long weekend, I also had an appointment with my ophthalmologist. Went well and I actually made it out under the three-hour mark (yay!)

This past week, I finally met with a job coach from Live Work Play, the organization I recently switched to for help looking for work. It was promising. Together, we filled out profile (closest thing I can think of) for myself, which listed my skills, experience, what people seem to like about me, and any specific accommodations that would make employment easier for me, which was something new.

Overall, the process and Live Work Play's approach are quite different to what I've experienced before, but made me feel more at ease. Instead of sending me job ads, or applying to them on my behalf, the organization has someone who works with employers to actually create jobs. Then, that person meets the job coaches, and jobs are matched with appropriate clients. Like I said, very different. But, if it gets me a job, then I'm more than okay with it.

And I recently found a sci-fi/fantasy book club here in Ottawa. I just stumbled upon it one night after deciding that I wanted to do something to get out more and meet people. I've already RSVP'd to a couple meetings, so hopefully it'll turn into something fun!

And now, Blogtober marches onward.

Cheers

JS Awareness Month - The Faces

In my last post, I wrote about the causes and typical characteristics of Joubert syndrome. While that helps promote awareness, it's just a part of the picture. Reading about cilia, low muscle tone, and the like can only tell a person so much. And sometimes that information can make things look a lot darker than they might actually be.

When I was first diagnosed with Joubert syndrome, the things I was told and looked up for myself both confused and frightened me. It wasn't until I met people with JS, and their families, in the flesh that I started to grow comfortable with the new diagnosis.

This is why I believe that, to promote awareness for a syndrome like JS, or any syndrome, disability, or impairment for that matter, it's important for people to see the faces along with the facts. With that said, I want to use the rest of this post to show some of those faces, of people big and small, affected and not, who I've had the pleasure of meeting over the last few years.

*All photos in this post were used previously and ok'd by the folks in them and/or their parents*

Cheers!

Thanksgiving Break

That week of posts didn't quite work out as planned. Continuing on with more JS awareness next week.

It's Thanksgiving here in Canada this weekend, and I'm heading up to the family cabin for a Thanksgiving picnic, then down to the US for some American junk food and Dinosaur Barbecue!


Cheers!

JS Awareness Month - The Facts

Joubert Foundation's logo

Describing Joubert syndrome, medically, can be daunting, so for this post I'll quote the Joubert Syndrome & Related Disorders Foundation's website, adding in the occasional photo or point for context:

Joubert syndrome is a rare genetic disorder characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing patterns and intellectual disability. These issues are due to abnormal brain development, resulting in decreased size of the cerebellar vermis and other brain abnormalities that appear as the “molar tooth sign” on a brain MRI.

Molar tooth in MRI

Although rare, several hundred individuals with Joubert syndrome have been reported in the medical literature. Mutations in at least 22 genes cause Joubert syndrome, accounting for ~60% of patients. (My causative gene is still unknown.) Subsets of individuals with Joubert syndrome can also have polydactyly (extra fingers or toes) , as well as retinal, kidney and liver disease requiring medical intervention.

Former sixth finger, now "bump" on my left hand

Joubert syndrome is one of a growing group of disorders called “ciliopathies” caused by dysfunction of a part of the cell called the cilium (Lower Right). The cilium functions as an antenna for many cell types, allowing cells to communicate with each other and sense their environment during the development and function of many organs. In fact, cilia are required to sense light in the eye, odors in the nose and fluid flow in the kidneys and liver. Disruption of cilium function likely explains the incidence of eye, kidney and liver problems in individuals with Joubert syndrome.

During this summer's JS conference in Phoenix, I attended a "science fair" with researchers studying cilia. Very interesting stuff, and the researchers were eager to meet individuals impacted by their studies.


Currently, Joubert syndrome affects an estimated 1 in 80 000 individuals worldwide and about 1000 families are known to the Foundation.

If you're interested in learning more, visit the Joubert Syndrome & Related Disorders Foundation's website at https://jsrdf.org/


Cheers!

Success Stories & Cinnamon Twists (Or, How a Doughnut Helped Me Become Independent)

I know I already posted today, but my mother just told me a story worth sharing.

She and a friend were out to brunch this morning, and their waitress recognized her. My mother told her she used to work in the bank in Winchester, the town my family lived in before moving to the city. The waitress then told my mom and her friend that she used to run a bakery across from the bank my mother worked at. Normally, the conversation would've ended there, but this was a pretty special bakery.

This particular bakery, my mother told the woman, was the very first place I was able to walk to on my own! It was about a three-minute walk from my house in Winchester to the bakery on Winchester's main street. In the summer, when I was about nine or ten years old and could finally walk with minimal assistance, a short stroll uptown with either of my parents (usually my mother) was a typical source of physio. Early on, the bakery was typically as far as I could go. As a reward, we would go inside (the building was easy to get in and out of) and I would be treated to one of their cinnamon twist doughnuts!

As I got a little older and my walking improved, I was able to make the trek on my own. Once I mastered the distance between home and the bakery, I was allowed to go further. First, another few minutes to the local pharmacy, one of the first places I got comic books from, then further still to the post office to get our mail, a major source of allowance for me at the time. Eventually, I was capable enough to traverse several blocks to the town's convenience and video stores, for the occasional movie and snack!

My mother shared this, with her friend, whose daughter is also disabled, chiming in, and had the waitress in tears, telling them how much the story made her day. Hearing about it, it kind of made mine, too!

Cheers

October is Joubert syndrome Awareness Month

This month is Joubert syndrome Awareness Month.

To promote this and spread awareness, and to keep up with my Blogtober project, I'll be taking the rest of the week to post about many different sides of JS, from the facts behind the syndrome itself, to many of the people I've met over the last few years, to how I feel about having the syndrome.

Until tomorrow then, cheers!

Blogtober

In your heads, remove "oct".

I was downtown this afternoon and halfway through the bus ride home, I had an idea.

October is Joubert syndrome Awareness month. For my artist friends, it's Inktober, where they try and complete one drawing per day.

Taking inspiration from both of those, I've decided to make this month Blogtober! 

Every day this month, I will dedicate at least some amount of time to the blog whether that means writing new posts, editing stuff, or updating older ones.

I'm sure I'll make it...

Cheers!

Inspiration

I get called an inspiration a lot. I know that word irks many people with disabilities but, honestly, I don't mind it.

Yes, I'm against "inspiration porn", when disabled individuals are considered inspirational solely based on being disabled. However, if someone thinks I'm an inspiration because of something I've done, like applied to a job, gone to college, or traveled to a comic convention on my own, and it gives them hope that, one day, their child just might be able to do something similar, then I'm flattered!

People with disabilities, like anyone else, should be respected for what they can do, not just for who they are. At the same time, as with other issues I've written about like freebies and symbols, I think this is one of those things people within the disability community just need to calm down about.

If someone is inspired by you in some way, that's a compliment. Whether you want to accept it or not, that's up to you, but just remember to be polite. There are way worse things people can say or do than praise you for something.

Cheers!

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.

Cheers!

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.

Cheers

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.

Cheers!

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!

Cheers