I spoke at the 2020 Sacramento Women’s March about disability justice.
Below is video (by Denice Ristau) and the transcript.
Is there power in standing up?
That was a trick question.
Is there power in sitting down?
I’m disabled whether I’m standing or sitting. And I’m powerful both ways!
So, let’s change this phrasing: is there power in showing up?
Let me tell you about Rosa.
Rosa May Billinghurst would ram her wheelchair into police during protests in the early 1900s. She continued using her wheelchair to make a path for herself even after being violently thrown out of her chair intentionally damaged by police.
Rosa was called “the cripple suffragette.”
Rosa claimed her space and she made it known she would be counted as a disabled woman and nothing less.
Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.
In September, I had the honor and privilege of giving a TEDx talk just two weeks after my father died from Ankylosing Spondylitis, a disease I inherited from him. I am so grateful for having this platform to share via the Sacramento TEDx Changemakers series.
I hope you’ll watch and share this video to raise awareness about living with chronic illness, but I also hope you’ll take something away for your own journey.
I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me. This walk felt like something else to fill up space on my calendar. I could be doing…something else.
It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.
I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”
It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.