Before I begin, I want to acknowledge that “disabled” is a word that makes a lot of people uncomfortable. There are a great many disabled people in the fibre and textile community who will not or cannot use the word to describe themselves, and that’s okay. We all make our individual choices to use a label or not. I also want to mention that while this essay is about my experience with my set of challenges, there are an infinite number of other ways to be disabled. No one disability is more or less than any other.
My tools of the trade. Using compression gloves and specialized splints to support my hands and wrists means I knit slower, but I can still keep knitting.
I learned to knit in 1983 and from the minute I picked up those needles, I was hardly ever seen without a project in my hands. Knitting led me to spinning, and spinning led me to weaving, but I always circled back to knitting. I was one of those “never not knitting ” people—it kept me focused and it kept me sane. When I knitted, I was calm and happy.
Then, in early 2013 I started having pain and stiffness in my hands. My wrists swelled up every time I knitted. I was knitting less and less because it hurt. A lot. Over the course of the summer, I developed more joint pain, then other symptoms, and that fall I was diagnosed with symmetric psoriatic arthritis.
My rheumatologist advised me to continue knitting to keep my joints moving and the tendons and ligaments in my hands limber, so I kept knitting. But it was no longer enjoyable. I knitted grimly, with a clenched jaw, until I ruptured a tendon under my thumb. I stopped knitting in early 2015.
Psoriatic arthritis is an autoimmune disease that causes joint and tendon pain, skin lesions, and fatigue. It is associated with metabolic syndrome, cardiovascular disease, and depression. The common treatment is a cocktail of fairly intense medications that come with a lot of side effects. Very few of the symptoms are visible, and the symptoms are constantly shifting, meaning my ability to function is always changing.
It was 2016 when a doctor first used the word disabled to describe me. It was a shock—I didn’t think of myself as disabled. I resisted that word for a long time.
Disability is often defined as a condition that interferes with or prevents a person’s participation in an activity, and I had decided it was my condition that was preventing me from knitting. But if you really think about it, disability is always defined by context. If you meet an expected set of standards for participation, you are able. If you cannot meet those standards, you become disabled. Sometimes the world around us sets those standards and sometimes we set them within ourselves. Realizing this changed everything for me.
I took me some time to determine that a large part of my problem with knitting was that I was holding onto a set of participation standards that I could no longer meet. But what if I simplified those standards, or set new ones? So, I tried a simple garter stitch shawl with minimal shaping. I knit slowly and deliberately, adjusting how I tensioned and threw the yarn, stopping when my hands started to hurt. It took me three months to knit that simple garter stitch shawl, but I had knit something.
Knitting simple garter shawls is my favourite form of self-care. Knitting within the limits of my disability serves as both physical therapy for my hands and wrists and as much needed mental health care. Knitting keeps me grounded in my craft and my community.
All images courtesy of Michelle Boyd.
