Why is this person just lying here?

Hi. My name is Emily, and I am an artist with a disability. I'm here in the capacity I can be: horizontal!

I am now in year five of living with Long Covid. The Mayo Clinic has some helpful information to describe this condition, and a March 2024 article in the Guardian estimates that 17.6 million Americans currently lives with the condition. The global prevalence would, of course, be many millions more. I am one of those, and my usual symptoms are common among long-haulers: Postural Orthostatic Tachycardia Syndrome, Post Exertional Malaise, and viral flare-ups. What that means in my experience is that if I spend too much time and energy sitting upright, walking, or talking, I will have a "crash", where my muscles, nerves, skin, and certain organs will become inflamed. I will experience fever, nausea, blurred vision, dizziness, shortness of breath, and extreme pain, to name a few. If I don't rest when this happens, I may become unconscious. 

So why am I here, not just lying in bed at home? Millions of people do, in fact, stay home in bed with this condition, and I do most of the time, as well. But lying in bed at home is boring, depressing, and not a life that I want. Before Covid I had a life I loved: I parented my two wonderful kids, had an art career and was also an explorative art and wilderness educator. I loved singing and dancing, adventuring with groups of children and with my own children, and trying to change the course of capitalism with my art. Long Covid took all those things from me. But I find it helps me to attempt to continue with my life and career to the extent that I'm able. 

It wasn't easy for me to accept this new reality. The day my disabled parking tag arrived in the mail I felt defeated. And totally ashamed to use it. But over time, and through many conversations with other disabled people, I have come to realize that hiding from the world and from the word "disabled" is internalized ableism. It's not helping anybody, and I thrive on creating change. I can make more change by living in positivity than in regret.

So here I am!

I am able to be here sharing this wonderful space in the world we're all creating, together. And yes I can talk to you!

And yes, of course I made art about Long Covid. And of course it includes over 300 faces of others living with the condition. Because using art to represent people and create awareness is what I do in life, and Covid can't take that from me. 

I am here with enormous gratitude for not only the venue that has allowed me to lie here, but for the many many people who have supported my work and life over the past few years. Not least of all my partner, Markus, who is probably sitting beside me right now. The caregivers of people with disabilities are superheroes.

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