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.
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