Being a chronically ill and disabled person is complicated and often means random bouts of not doing. That’s made being an advocate and activist really hard.
Recently, I’ve begun to find ways I can make a difference that speak to me. Some of them are creative, some of them not.
Nothing I do to help disability visibility and the furthering of education and empathy about the disabled experience is about me. It’s for me and others like me who have struggled with existing in a world that asks questions like, “Couldn’t you just try harder?” or “What about yoga?” and saying things like, “Just try another medication.” “I’ve heard about this new procedure…”
Often the collective we are told we must fit in an able-bodied world. Seldom do people consider creating space for us. We cannot bend, we cannot adjust, and honestly, we might not want to. So I want us to be heard.
I’m new to this, to finding my path in assisting us. But I’m trying. I’m lifting us up in the ways that I can.
I’m writing chronically ill characters into my novels as just people not tokens or objects. Read more about my thoughts on there here: Why I Wrote a Disabled Serial Killer.
I’ve gotten May to be declared as Ehlers-Danlos Syndromes and Hypermobility Syndrome Month in WA state.
I’ll also be teaching a course on writing disability at the Willamette Writer’s Conference in Portland, OR in August 2023.
I don’t list these things to brag. After all, I see them as but a jumping off point. I list them to show that even the smallest things done with intent can make a difference.
I hope to have so many things one day I just point you all to a non-profit I started, but until then, I’m moving forward step-by-step.
I hope you’ll join me in making a difference in the world. I’m not asking for you to stage a sit-in or write up a bill that revolutionizes the United States. Hell, I’m not even suggesting you becoming an advocate, let alone an activist. It isn’t for everyone. It isn’t for most people, really. But maybe you could find something that speaks to you and do something small. You don’t have to leave your house to set something beautiful in motion. Just consider doing one thing in your life that makes you say, wow, I did that.