Part of the Audience

I speak about my disability quite a lot. I enjoy relating stories of when I was younger and helping or encouraging others.

Within the last few years, I’ve found myself playing audience member while other people, mostly within the Joubert community, speak and share their stories.

I’ve written about speaking alongside my friend Noldon at the 2015 JS conference in Chicago, and unfortunately missing out on seeing Abby, a young woman I’ve known for some time now, get up with her parents and speak at the conference in Phoenix.

This time, I want to share a presentation (click link, please! )from a much younger individual with JS*.

As part of a Joubert syndrome Awareness day put on by her school for JS Awareness Month, Leyla Swenson gave a presentation to her Grade 4 class about Joubert syndrome, talking about the syndrome, how it affects her, and about the conferences and some of the friends she’s made through them. I’ve known Leyla and her family since attending the JS conference in Minneapolis in 2013, and I really enjoyed this video. She did a great job and has an awesome perspective on her disability at that age!

Speaking will always be fun, and I appreciate the fact that people still want to hear from me, but I’m starting to like being a listener myself and sharing the wealth. The more, the merrier, right?

*Thanks to Leyla’s mom Jenni for letting me include her video

Cheers!