The Book II: Abridged Intro part 1 - How it All Started

Because I recently realized a chapter in a book needs to be a lot longer than a blog post, I'm going to break up the introduction I said I'd post into two abridged parts. Plus, writing an abridged version now might make it a lot easier when I start to write the full thing.

*Note: This is just a rough version for the blog, and not exactly what I'm putting in the book.


The first part is basically about how I got to this point in regards to speaking, writing, and advocacy.

It started in 2003 when I was Youth Representative for Easter Seals' district council, North Dundas. They had asked me to be part of The Leaders of Tomorrow, a group of teens and young adults who would speak about disability and accessibility awareness on Easter Seals' behalf.

I was part of the first two incarnations of the Leaders of Tomorrow, and did several speaking engagements during that time. Highlights include being asked to speak to an accessibility committee when my town's hospital was being redone and updated, promoting Easter Seals in a commercial that played on the Jumbo-tron at an Ottawa 67's hockey game, and speaking to classes at high schools and universities.

Shortly after my run with the second group of Leaders ended, I took time off from speaking because of college. I did the odd engagement, like speaking to campers at Camp Merrywood, but that was about it. I did however, write an article about transitioning to adulthood with a disability for a website called Door2Adulthood. The site took stories and testimonials from disabled youth across Ontario and it was a fun experience.

After my most recent tenure at college a few years ago, I wasn't really doing anything and was getting kind of bored. Out of that boredom came the articles I wrote for the Support for Special Needs website. Topics included post-secondary education, looking for housing, and going into adult healthcare. They were really well-received, and it was a great motivator knowing that people were getting something from what I was doing.

Next came the Joubert conference in Minneapolis. During one small Q&A session with a few of the doctors who were in attendance, I found that I had nothing to ask and not much to say. So with nothing better to add, I talked about speaking and writing. Several people, including another adult with Joubert, thought it was great that I was doing this and suggested maybe going further with it. Several more people at the conference expressed the same opinion after I gave a presentation about my life.

After the conference, I was mentioned in a couple of blogs. This inspired me to finally create a blog of my own, to share more about my life and further my passion for disability/accessibility awareness.

Writing in the blog inspired me to get back into advocacy and, with help, I set up to opportunities. First, I attended a conference for the Canadian Organization for Rare Disorders (CORD), where I met others in the rare disease community and spoke to several politicians. Second, I spoke to a parent group about growing up and being diagnosed with Joubert syndrome and the effect it's had on my family.

And that brings us to the Joubert syndrome conference in Chicago, where I was asked to speak again and where I got the idea to write a book.

Enough Already! *Rant-ish post*

Yesterday, I was unfortunate enough to have clicked on an article about Donald Trump making fun of a physically disabled reporter. Honestly, I saw "Trump" and "disability" in a blurb together and clicked it, holding onto hope that it might have been something positive. Alas, I was very wrong.

I'm not going to go into detail about the incident because A) I didn't really read much about it, and B) I think that sharing even the slightest detail does a disservice to the reporter and gives Trump too much added attention. Bottom line: it was wrong!

I'm not political, and I'll never condemn someone for their own personal leanings, but I think we can all agree that the leaders and potential leaders of our world need to have more class than what was displayed in this situation.

Seriously, if an average person on the street displayed that kind of lack of respect, they'd either be severely chastised (best case) or have the snot kicked out of them (worst case).

In an age where we're so focused on acceptance, tolerance, and fair play, we need to stop making excuses for certain people and call them for what they are, bullies.

Maybe then we'll all get along that much better.


Cheers!

The Book - This Is Seriously Happening Now

I've been sitting on this for a couple months now, and posted about it on here more than once, and now I think it's finally time to start writing this book!

It's going to be about transitioning to adulthood with a disability, but focusing more on the "softer" side of things. This means that I've decided not to write a lot about healthcare, pensions, and other things that would be technical or really person or location-specific.

Instead, I'm going to write about topics that are kind of more universal. Some of the things I'm including for sure are subjects I've already written about on here, like bullying, getting out on your own (work, volunteering, or whatever) and feeling comfortable with your disability. I'm just maybe going to expand on them a bit.

I'm mulling over other topics like dealing with family, using social media, and possibly something about being diagnosed at an older age. Probably going to post some of these on here first to see what people think.

I'm planning on posting a sample intro on here hopefully by the end of the month, and as usual I'll post updates as things happen.

And now I've actually committed to this. Gotta say, I'm nervous but super-excited to start writing!

Cheers