In our September Studio Hours session, to mark Arthritis Awareness Month, we shared a conversation about disability and craft. Our speaker was Michelle Boyd, a master spinner and prolific teacher. She shared her personal journey with arthritis and how it has affected her life and craft.
Arthritis is the most common disability in the world; it is estimated that twenty per cent of Canadians are affected by some form of arthritis. Arthritis is not just an “old person’s disease;” it can strike at any age. Michelle’s first personal exposure was her mum, who, at age fifty, developed knee trouble. Michelle first thought of this as just “getting older.” Then her child, at nine years old, developed debilitating arthritis (her child is now twenty-seven and their arthritis is in remission).
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In 2013, Michelle was diagnosed with psoriatic arthritis, an inflammatory autoimmune disease similar to lupus and rheumatoid arthritis. After a sudden onset of the disease, she went from having a busy travelling and teaching load to not being able to get out of bed, hold a glass of water—or treadle her spinning wheel, a huge part of her life!
Chronic illness has changed how she approaches craft, teaching, and communicating with people. She has realized that everybody has something—a weak spot, something that makes them hurt, that slows them down. Chronic illness is not the end of the world. It has meant a changing of lanes, a changing of how she lives her life.
She embraces the word “disabled” in its social definition where, as she says, “society cannot meet the needs that I have [for me] to function in it.” I found her examples very clear: Her ability to navigate a space may have been hampered or removed by building design choices that place elevators back in the receiving bay, or by room lighting that causes her to develop a migraine.
“People are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.” – scope.org.uk/about-us/social-model-of-disability/
This distinction of the definition of disability spawned some discussion in the chat about the different terms that people use, like differently abled, special needs, or differently capable. Michelle shared that these terms can be seen as minimizing. Disabled says it like it is: an inability to do something. She shared the example of wearing glasses: I cannot see without glasses, I am not able to see, so I am disabled, and the glasses are my disability aid.
After sharing her diagnosis and treatment journey, she then went on to talk about some of her personal challenges and solutions. Her biggest impairment is in her wrists and hands. She wears metal splints on some fingers, some of which appear decorative while also being functional. She has waterproof neoprene splints that she uses while washing fibre. She finds that compression helps and regularly uses compression gloves and socks
She sometimes uses elastic therapeutic tape (also called KT tape or kinesiology tape) that pulls the skin away from tissues below, compressing or decompressing fascia, muscles, and other connective tissues, and altering pain signals to the brain. Michelle finds that the tape provides improved blood flow and mobility—plus she relishes the bright colours!
Michelle rests her hands, elbows, and shoulders frequently and showed us a recently purchased wool pillow from Long Way Homestead that she uses to rest her hands and elbows on while knitting.
She works in short spurts and doesn’t push through projects. Finishing those last few rows before bed may mean that she’s not able to brush her teeth! She follows a schedule of 15–20 minutes of work followed by 10 minutes of rest. She acknowledges that she’ll never win a sheep-to-shawl speed competition again, but these measures will allow her to keep being a crafter.
One large challenge has been starting to carry and use a cane; this was a difficult change in her life, and she says that ninety per cent of the battle has been mental. She’s had to adjust routines and learn how to carry a cup of tea with just one hand! And she has also learned to ask for help when she needs it, and that it’s okay to say she’s not okay.
Accepting her disability means that she has also changed how she teaches and writes about yarn and has made her a kinder and more patient teacher. I loved her expression that teaching has become “a conversation instead of pedagogy.” While working with a student, she’s more responsive to why they are holding their hands in a certain way while they work and works with the student to see whether it’s an adaptive method because of pain, or a learned method, perhaps from a grandmother who did it that way because of arthritis in her hands.
A member asked Michelle what she chooses to make now, given her limited time and energy. Michelle answered that she knits for herself and, when not knitting up swatches from her experiments, knits things that make her feel cozy, especially simple socks and shawls from patterns she knows well. This led into a discussion of some of the neurological challenges that come with chronic pain, including depression and “brain fog” (psoriatic arthritis is associated with increased rates of both). We shared tips and methods to help stay on track, including making lots of lists and using lots of sticky notes.
We spent some time discussing our use of language, recognizing that we have choices that are more accessible and less hurtful. Rather than calling something a “crazy pattern,” we can use more precise, less stigmatizing language, perhaps referring to it as “difficult” or “convoluted.” We talk about “crazy” amounts of stash and “addiction” to knitting or blame things on “OCD” or “ADHD” without realizing the impact that those words may have. The casual use of these words is unsettling and minimizing of the reality that many people live.
Many members expressed appreciation for the articles in Digits & Threads that bring accessibility issues to light. As Michelle said early in her presentation, we all have, or will have, something that slows us down or that challenges us. The fibre arts community has many members with varied disabilities. Eliminating the competitiveness and allowing for a more “you do you” attitude creates a safer space for everyone. As Michelle said, “The more people that come to play, the more fun we will have.” Having an awareness of these issues, and the appropriate language to talk about them, helps us all live in a better, safer space.