Tonia LaRiviere turned her difference into positive change as she advises on issues of accessibility.
I was diagnosed with Juvenile Rheumatoid Arthritis when I was twelve years old – my life was turned upside down. It affected every joint in my body, including my jaw and neck. I was a normal, active kid, living a normal life, and within a couple of weeks, I was bedridden from pain, unable to move a finger by myself – my life would never be the same. At the time, I was angry, resentful, defiant, and stubborn. I didn’t want to be treated differently. Three weeks prior, I wasn’t different, I was able to go to school, be physically active, and play with my friends. Three weeks prior, I was able to get out of bed, get in a bathtub, and dress myself.
When I was eighteen, I was diagnosed with clinical depression; my biggest challenge yet. I was physically, emotionally, and now mentally depleted, but I managed to fight every excruciating minute of my days. I survived.
In those earlier years of my diagnosis, I experienced bullying, social exclusion, and lack of understanding with few supports, with the exception of medical supports. To date, I have had twenty surgeries, all a result of arthritis, and there will be more in my future.
I got involved with the Steadward Bears para-swim team. It was the scariest thing I have ever done. All of my intentions and achievements were in defiance of my disability, which served me well. I had worked in film, television, event planning, communications, and makeup artistry. This was different; I was changing my narrative. This experience was profound in my personal growth and self-awareness.
I now embrace my difference in a way I never have, I value my perspective, I am in a position to use it for positive change. I was a board member for the Arthritis Society and continue to share my story in an effort to educate others on the realities of arthritis. Currently, I am in my most meaningful role to date as the Chair of the Accessibility Advisory Committee with the City of Edmonton, advising City Council on issues of accessibility, and contributing to policy advancements and education… just don’t ask me to put on my socks.
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