Gettin' Out: The 2017 edition

I really hope I'm not jinxing myself, but I think it's safe to say that the worst of winter weather is finally behind Ottawa.

As such, I've decided to take advantage of that decent weather, get out regularly a couple days a week, and do some stuff. I've even made use of Para Transpo and set up a regular schedule for extra motivation.

One day a week, I spend the afternoon downtown. This day, I've set up for anything. If the weather's good, I go for a walk, browse through my local comic shop, and get some lunch. If, like today, the weather's not-so-good, I pick a spot inside the coffee shop I get dropped off at and either read, write, or follow up on work-related things.

Later in the week, I get dropped off at another coffee shop (one that's slightly closer to home), and blog. I've been wanting to try and use my laptop outside my home for a while now, and last week was my first attempt. Went pretty well!

This was all to find something to do a couple days a week, mostly to occupy my mind from all that employment stuff I wrote about in my last post so I don't fall into a rut. It's also a good way to get back into a routine of sorts. Oh, and it's pretty fun so far.

Cheers!

Job Insecurities

Something here I have to vent about.

I've been spending a good portion of the day doing employment-related things: following up on resumes, following up with service providers, and think about new places to contact for potential work. During this process, I've developed the opinion that looking for work sucks, and I'm starting to get annoyed and a little scared.

In a recent exchange with some of the people who have offered to help me, they brought up the idea of volunteer work. Now, several years ago this would've been a totally acceptable suggestion, but as I've spent the last three to four years of my life volunteering for one group or another, the recommendation bugged me. For the first time ever, I felt the need to speak up and be forceful (not rude!) with a service provider. I guess, like I said with Para Transpo, employment assistance for those with disabilities is just another broken system.

I know the job market for anyone, not just individuals with disabilities, is hectic right now. I also know that, realistically, I come with several different accommodations and limitations. But there has to be SOMETHING out there, right??

I've decided to go back through organizations I've looked into or sent applications off to in the past, and see if there's any potential employment opportunities around. Maybe with the experience I've gained in the last few years from the placement, treatment centre, and call centre, I might actually get lucky.

But all this process is starting to scare me. My parents are reaching retirement and have things they want to do, and I want to be more self-sufficient and get out more in order to let them do those things, but I can't if I'm stuck volunteering, living off just a disability pension.

Oh well, for now I have a plan. I'll just have to be patient and see how this one works.

Cheers

Adults with Joubert syndrome

One of the topics I get asked about the most, or that people bring up my name in relation to, is Joubert syndrome and adulthood. What's it like being an adult with JS? What does the future hold for my child? Are there any people with JS out there over X age?

I can relate to their curiosity, since this was what I was most interested in finding out upon being diagnosed with Joubert syndrome.

That may sound strange coming from someone who was diagnosed at 25, but it's true. I had no real interest in issues like genetics, and felt confident that my doctors were handling the medical aspects of the syndrome, so the first research I did was to try and find others like myself.

Being a rare disorder, it took a little while, but eventually I started to find other adults out there with Joubert syndrome.

Since being diagnosed, I have met many adults with JS of all different ages and ability levels from all over the world (thanks Facebook!). Some have gone to college or university, some work or are otherwise involved in their communities, some live on their own, have travelled internationally, and a few have families of their own.

Over the last couple years, several of those adults have even become pretty good friends! (Again, thank you Facebook). This is one of the reasons why I enjoy attending the Joubert Foundation's conferences every couple of years. It's probably the only time and place where I can meet others like myself in person.

So, yep, there are loads of adults with Joubert syndrome out there who all seem to be doing the best with what they've got. As for what the future holds for younger kids with the syndrome? Well, that's up to the individual and those around them. Fortunately, there are many good examples out there to draw from.

Cheers!

Networking & (possible) Nominations

Last night I attended Entrepreneurs in Action, another networking event, and it went pretty well.  I didn't make many new connections, mostly just reaffirmed existing ones, like with the great folks of Ability First Ottawa, a disability organization I considered volunteering with last summer. Actually, I saw quite a few people I'd met at the last event I went to, so that definitely helped to ease me into things.

I could've been more talkative, but I did better than last time, so that's an improvement. A Jiu jitsu demonstration by a local school proved to be a great conversation starter when I learnt that a man who I met at the previous networking event had attended the same Taekwondo school I had years ago.

The most interesting part of the evening though came when I was informed by a friend that she had seen my name on the list of nominees for the Best Blogger category of last year's Faces of Ottawa awards. Right now, this is unconfirmed. I did some research on it last night and plan on contacting the group in charge early next week to get some clarification but if it's true, it's pretty awesome and means that at least someone here in the city is acknowledging my blog! Will definitely be posting more on this when/if I learn more.

So, all in all another productive and interesting event under my belt and, with the weather we've been having here recently, just a good opportunity to get out, period.

Cheers!

Broken Systems

Over the past few weeks, I've heard the term "broken systems" in conjunction with disability-related issues more than a few times. The latest was this morning, in reference to an article in our paper about a woman complaining about the poor quality of services provided by Para Transpo, Ottawa's accessible transportation service. Her complaints focused on the exceptionally long wait time to book Para Transpo over the phone (45 minutes, in this case). Having waited for almost two hours on multiple occasions, I can understand her frustration.

That, at least in my experience, isn't the worst of it with Para Transpo. There are many issues I've faced with the service that have contributed to a lack of independence on my part. These have included:

• Only being able to book a day in advance. Not very helpful when you have a spontaneous outing, or possibly have to reschedule an appointment on very short notice.
• The chance that you many not even get your trip booked at all. I know the company has a lot of customers and only so many drivers/vehicles, but it really is a pain when you have something important to do, like go to a job interview.
• Para Transpo has a policy of a thirty-minute window, which means they could be a half hour (or more) early for you, or a half hour (or more) late. Not fun when you're waiting for a pick-up at night, in downtown Ottawa I can assure you.

Now, I have the utmost respect and patience for the drivers, schedulers, and people answering the phones, but Para Transpo is a seriously broken system. If the average hold time is 45 minutes, then one could assume that having a few more open phone lines might be a good idea to decrease that number? Or extend the window of opportunity for booking. Either way, something seriously needs to be fixed. Maybe even offer a "Top Three" type of service, so customers can get to certain destinations quicker.

Unfortunately, if this morning's article is any indication, that's unlikely to happen from the company's end as a representative from Para Transpo, when questioned, seemed to think that 45 minutes is an acceptable time to be on hold. To this individual, I would offer a challenge: Get up early every day for a week (including Sunday), sit by your phone for forty-five minutes or longer (while knowing you have other things to do during that time), and pray you get your desired booking. And for added effect, do it in the middle of Winter, without access to other means of transportation. Maybe after a few days, this person will understand what Para Transpo's customers are complaining about.

In the meantime, I know there are lobby groups in and around Ottawa and I'm thinking it's about time to get involved with one.   


Cheers