2014: Year In Review

It's New Year's Eve, so I thought I'd do a year-in-review post.

2014 got very eventful very quickly. Before I could think of what to do for the year, I was being approached with advocacy opportunities. A few, such as attending the CORD conference and speaking to the Rare Disorders Network Parent 2 Parent group, I've written about here. Others, like having my story shared in a blog written by the mother of two little boys with Joubert, I'll write about in a later post, one I get permission. For now, I'll just say it was a great experience.

February, 2014 goes down as the moment when I got my first paying job!

After many years of trying, I finally landed paid employment with a call centre. It only lasted a few months, but it was a major first and very rewarding.

Later in February, I got proactive with writing and advocacy by staring this very blog.

The next major event of 2014 was the Canadian Organization of Rare Disorders (CORD) conference in March. I participated in discussions about genetics, policy and advocacy, and spoke to politicians on behalf of the Joubert Syndrome community.

With May came my second year going solo to the Toronto Comics Art Fest (TCAF) for a weekend in Toronto. I took a train from here to there, got to stay in a suite (which was awesome!), had great weather to walk around, and got the complete series of Bone, a comic I read when I was younger. I even met the creator, Jeff Smith, who signed it for me!

Major fanboy moment!

 Summer was here, there, and everywhere. I went down and stayed with my grandmother for a few days, spent a lot of time at my family's cabin, attended Ribfest for the first time, and went to my first outdoor rock concert: Sam Roberts and Collective Soul at Ottawa Bluesfest!



 

 

 

With Fall, I decided to get pro-active. I started looking for another job, this time using a service provider who specialises in helping people with disabilities look for employment. Nothing yet, but it's been going steadily. I also set up some speaking opportunities for 2015, but more on those later.

Overall, it's been a good year. Cheers to 2015.



Merry Christmas

Wishing everyone Merry Christmas and a Happy New Year from The Rare Writer.




Every Christmas needs a little Rudolph

Transitioning Tuesday: Getting Out

Transitioning to Adulthood with a Disability: Getting Out Into the Community

 

Mobility issues, bad weather, social anxiety, or any number of other reasons can make it so easy for someone with a disability to become complacent and just stay home, watching TV all day. This is why it is so important to find a way to get out into the community. There are many different ways to do this, including working, volunteering, or just getting out.

 

Work

 

Paid employment can be tricky for anyone to come by. For those with disabilities, it can be harder still. It took me until just this year to find my first paying job. It was with a call centre that luckily specialized in hiring people with disabilities. The job was also done online, so I was able to work from home. This was more accommodating for me, even though I wasn’t in a social workplace setting.

 I was let go after only a few months (no harm no foul, it was just after a probationary period). Almost immediately, I looked into an employment services program for people with disabilities. I met with a service provider who could help me look for work. Some of the services they’ve provided for me so far have included polishing my résumé and e-mailing me job ads. I haven’t found work yet, but since I’ve been with my service provider I’ve been to a couple job/networking events, had a few interviews (which I’ve done on my own), and I’ve found that I actually have motivation to look for work. Like other things I’ve written about, it’s a long process but it’ll come.

 

Volunteering

 Another, and possibly easier, way for disabled people to get out into their community is to volunteer. Volunteering is a great way to get out, meet people, and contribute to an organization without having to worry about factors such as liabilities and finances. It can also be a lot easier to come by than paid employment.

 For over a year now, I’ve been volunteering in the foundation office of the Ottawa Children’s Treatment Centre. I used to be a client of the centre, so they seemed like a good fit. I’m there about once a week, doing mostly data-entry and research for their annual fundraising campaign. I’m not going to lie, every once in a while it can seem repetitive. However, it is fun and rewarding. Plus, I’m out in an office setting among other people which is great.

 

Just Get Out

 One way to get out into the community is to literally just get out. Go for a coffee, have lunch, hang out with friends, join a gym, become part of a group or club. Whatever. Just do it. Explore your community, test your limits, and find places you’re comfortable going to. Then, it’s just a matter of having the courage to go to those places and enjoy yourself. It’s a great way to gain some independence and be social at the same time.

Sticks and Stones and Stares

A friend recently posted about a young disabled girl, and how she was being bullied at school. After a while, other parents of children with disabilities commented with their own experiences. As I was reading this conversation, I got to thinking about my own experiences with bullying and people's reactions to my disability.


The Worst of It:

It's happened incredibly rarely (thankfully), but I have been bullied. The worst of it happened when I was in elementary school, at about ten years old. A group of boys (one of whom had been a friend) kept picking on me for a few months and even cornered me on the playground. It stopped, due to parent and teacher intervention, but looking back, I really think it caused me to be less social with people for a while. One positive thing to come out of this was that a few years ago, the former friend reached out to me online, wanting to catch up on what we'd been doing since leaving high school.

Speaking of high school, it wasn't nearly as bad, but in hindsight I realise that I was picked on there as well. This one guy would occasionally talk down to me like I was slow. Nothing awful, just stupid stuff I shrugged off. I think he did it because I talked to his girlfriend once. That part's actually kind of funny when I think about it now.


It's Not All Bad:

Some people's reaction to me have been pretty funny. I started shaving in my early teens, and had a beard by my senior years of high school.

Beard!

This coupled with my short stature, got some interesting reactions. I was going for a walk one day, when I passed a little boy and his mother. As I passed them, the boy stared at me. I couple seconds later, I heard him say to his mother, "Mommy, mommy, that little boy has a beard!" I almost burst out laughing. My parents did too when I told them later.


Sharing My Experiences (and Learning From Them, Too):

A few years ago, I was asked to speak to some of the campers at Easter Seals Camp Merrywood. I had finished my presentation, and was taking questions. One camper asked me if I had ever been laughed at, specifically in college. The question was totally unexpected, and I had to pause for a couple seconds to think about it.

I told him two things. First, in my case it was the opposite. Classmates were actually interested in my disability, and a few people who had relatives or friends with disabilities took it as common ground. Second, I told him that if anyone at a college/university level is laughing because someone's disabled, they're the one with the serious problem.

I'm sure my response helped the camper out, but in a way it helped me out, too. The question, and my response, helped me remember the experiences I mentioned earlier and allowed me to get past them.


It Happens:

Bullying happens. People stare, and say rude things. It sucks, but it's the truth.  It happens to everyone. For people with disabilities it can be worse because, in some cases, they can't physically stand up to it.

The best courses of action, in my opinion are education and positivity. Talk to people about your disability first, so they understand you better. If that doesn't work, find people who can see past the disability and just accept you.


Cheers!

Transitioning Tuesday

Starting a new thing here on the blog. You've heard of Throwback Thursdays, and maybe Feel-good Fridays? Well, get ready for Transitioning Tuesdays.

I've posted about the "Transitioning to Adulthood with a Disability" articles I've written (linked here) and how I recently had to stop due to other things going on in my life. Now, I've decided to continue on with some of the ideas I never got to use, and post them on here. I'm choosing the first Tuesday of every month (starting next month) because 1) it keeps me to a schedule, and 2) Transitioning Tuesday was the closest I could come to thinking of a catchy title.

Stay tuned...

Getting this whole thing figured out.

And by "thing" I mean the advocacy stuff.

The blog's going great, though I think I'm going to start posting on here more often. And, I may have some speaking-type opportunities lined up for this summer (not really set in stone yet, more on this in the new year).

What I'm trying to figure out is how to take it further; be more pro-active. Well, I've been mulling it all over for the last couple days, and I think I've got a plan figured out.

First thing, plan more speaking. It was suggested to me that it might be easier to make motivational speaking the priority in regards to advocacy, with the writing coming as a natural second. Seems like a good idea.

Second, do some research. Over the last week, I've been going through things like my résumé, past speeches, and even old Facebook posts to look back on what I did previously, and look for any past contacts who may be able to offer some help.

Third, and probably the most important, look for another job. The service provider I'm with has proven very useful and proactive at helping me look for work. Right now, I'm waiting to hear back from a few places, one of which looks very promising.

All this, plus one or two other ideas I'm kicking around should prove to be effective, or at the very least, keep me busy.

Cheers until next time.

And Here We Go Again...

Warning: This post may become rant-like.

This week marked that truly awesome biannual event I like to call My Housing and Home Support Headache. Five years ago, I filled out some forms to get put on a wait list for accessible housing in Ottawa. Twice a year, I phone in and check on my status, and two things always happen:

1. My status never really changes
2. I get angry

A fairly accurate depiction of me during these times.

It's usually around this time that I also look into home support and attendant care. Around the same time I received forms for housing, I also got a package with information about disability support services in and around the city from a rehab centre I occasionally got to. I've contacted several organizations and providers over the past several years, and it's always the same thing:

1. The lead doesn't pan out
2. I get angry (Noticing a theme here yet?)

I've been denied various services for various reasons: I'm not disabled enough, I'm too disabled, I'm too young, I'm too old etc. There's usually always a runaround, too. I'll phone service A, who will tell me to phone service B. Then service B will send me back to service A, and so on. At this point, I'm seriously half-expecting to be told to do the Hokey-Pokey and turn myself around.

A few days ago, I asked about getting some updated supports info (the original package is from '08), and got the runaround again. This time, the department I got the original information from said I would have to get a referral from one on my doctors at the rehab centre first. So, I was transferred to what I thought was the doctor's clinic, only it was the centre's main desk. From there, I was connected to the right clinic, but was told I would actually need to see the doctor herself to get a referral. Finally, I was transferred to my doctor's secretary who told me she'd look into getting me a referral.

 So now I wait. And while I'm waiting, I'm starting to think it might be time to look at some other options. Maybe it's time to go a few steps above the service providers and talk to my alderman about what I can do, or maybe Ottawa's just too big and I need to look into a smaller city. Decisions, decisions.

Anyway, I've done pretty much all I can do for right now. Just hoping for the best.