Disabled Sci-Art
On finding ways to see our symptoms, and a workshop offering
There’s a particular kind of frustration that comes with being sick, but looking “normal.” I’ve written about invisible illness in the past, described how getting diagnosed with a thyroid disease in my early 20s felt so jarring in part because nothing on the outside was different—but inside, my thyroid was disintegrating.
(As an ironic side note, I talked about goiters as being one of the visible manifestations of thyroid disease, but said I’d likely never have one. Fast-forward a few years on from that piece, and I did! It’s mostly gone now, back to being invisible to the human eye.)
There’s a certain amount of privilege in being able to “pass” for healthy and able-bodied, a privilege not afforded people with more visible disabilities. Nobody stops me in the street to ask what’s wrong with me, nobody stares when I get on the bus or go about my day. When my voice changed from spasmodic dysphonia, it was suddenly the most “visible” (technically audible) disability I had, but it was also the least difficult to manage. My voice doesn’t cause me pain or fatigue or brain fog or nausea. My other illnesses do.
I think that’s why I was so struck when I first saw the embroidery art of Lia Pas. The first piece I saw was an illustration of the trachea and bronchi, delicate white threads in an anatomical design while red thread spelled out poetry along the branches of the lungs. It was so beautiful and precise, a perfect combination of science and art.
I want to talk to her, was my first thought. I want to hear about how she makes these creations.
Lia was generous enough to spend some of her energy allotment on a video call with me, and from there we decided to host a workshop together. She would teach a short session on art and visualization, and I’d share a poetry exercise to help condense our words about symptoms in the most visceral way possible. We decided to call it “Seeing Symptoms.”
Though it’s taken months to plan, we always hoped to hold the event in May as part of ME Awareness month. Myalgic encephalomyelitis, sometimes called “chronic fatigue syndrome,” continues to be a poorly-understood condition with few resources available to those living with it. The hallmark of ME is a symptom called “post-exertional malaise” (PEM), which is when your body is even more depleted, and symptoms worsen, after most basic daily activities — showering, cooking, even eating. The disease is thought to affect somewhere between 15-30 million people worldwide, and it can often result in being homebound or entirely bed bound. One of the most striking graphics I’ve seen about the disease shows the quality of life with ME compared to living with other illnesses (including cancer).
The data for this chart comes from a paper by Michael Falk Hvidberg et. al., “The Health-Related Quality of Life for Patients with ME/CFS.”
Lia has ME, along with a handful of other diagnoses, and her embroidery art helped her make sense of her symptoms, in the same way that my writing allowed me to come to terms with my illnesses. And as it so happens, May is also Arthritis Awareness Month, which is in my wheelhouse.
So I’m excited to share that we’ll be hosting this virtual, free event Thursday May 28 at 12pmPST/1pmMST/2pmCST/3pmEST. You can sign up at the link here. You’ll need pen and paper and whatever other art supplies you’d like, plus anatomical prints, which can be downloaded for free from Wikimedia (because Gray’s Anatomy plates are in the public domain).
I hope we’ll see some of you there!
