Setting Your Own Standard: Disabled Makers
There are as many disabilities as there are disabled or chronically ill people. There are nearly 50 million of us in the United States alone so chances are good that you know someone who has at least some disability, whether it be temporary or long-term. We live with limitations that non-disabled people don’t generally even THINK about. Some of us are homebound, some of us get sick really easily, some of us need constant help just to live–but why are so many disabled and chronically ill people makers?
I’m one of those 50 million. I was diagnosed with Fibromyalgia in August of 2013 and a whole host of other diagnoses followed as we got some symptoms under control and others reared their heads. My 3 main diagnoses are Fibromyalgia, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). All that to say I have constant pain somewhere in my body, I can’t stand upright and still for longer than a few minutes without getting faint and risking a fall, and I’m always tired.
“There are as many disabilities as there are disabled or chronically ill people.”
The impact this has had on my life is profound. I used to hike, swim, and dance. I loved road trips and working in the hot summer sun, planting and maintaining a garden. My life was expansive and an endless opportunity to explore the world. Then I got sick and my world got smaller and smaller.
My experience is quite different from a lot of chronically ill people. I knew what I had when the symptoms really hit me hard, because my mother had been diagnosed with Fibromyalgia. Her experience was more typical of other patients: she was seeing doctors of all sorts (sleep specialists, endocrinologists, epilepsy specialists, neurologists, rheumatologists, pain specialists) and still took about 15 years to get a diagnosis. She went through doctors not believing her symptoms, thinking she had epilepsy (turns out it was a fibromyalgia sensitivity and reaction to benzoate preservatives in her food making her neck spasm), and eventually finding someone who believed her lived experience–but only after she spent years being gaslit by the medical establishment.
“The calculus of choosing to put ourselves out in the world is completely different for disabled folks. So we look for other ways to expand our horizons.”
In my time as a chronically ill person I’ve learned that this world isn’t built for us. The “accommodations” that need to occur for us to do “normal” things isolate us. A non-disabled person going to a concert only has to buy tickets and plan what to wear.A disabled person has to make sure they have wheelchair access, or that they get seats near an elevator. We have to make sure we have all the meds or apparatuses that we need to go to the bathroom, to sit comfortably for a few hours, or protect our suppressed immune systems from the germs that people carry nonchalantly but that could kill us. We might have to buy a second ticket to ensure that we have help on hand in case something goes wrong. This is all to say nothing of the energy required to deal with people staring at you as you get off that elevator, or dealing with people asking you very personal questions about your health as easily as they ask your name (sometimes before even asking your name or introducing themselves).
The calculus of choosing to put ourselves out in the world is completely different for disabled folks. So we look for other ways to expand our horizons; ways that don’t rely on others so heavily and don’t take quite so much from us. Standing in a queue for 15 min can cause me pain lasting 3 days, eating at a restaurant can be tricky when you have food triggers, and being near someone who is smoking will cause me an asthma attack that takes a week to fully recover from. We are constantly asked to justify our existence in a society that values humans as resources and places productivity and earning potential as top priorities. We long for community just like everyone else, and we want to be valued members of that community.
“Making allows us to explore in ways that honor our limitations.”
I come by my making honestly. My mother sewed clothing for my elder siblings and halloween costumes most years. My father did woodworking in his spare time, and I have siblings who paint and draw, but I’m the textile nerd. I sew clothing, I do leatherwork, I quilt, I weave, I knit, I crochet, I embroider, and a whole host of other textile arts. I started in the making world before I was sick, with self-published knitting patterns on my own website in 2004, when knitting blogs were the beginning of this community and blog rings were how you found new makers to follow. One thing has been consistent throughout those years; there are an extraordinary portion of makers who have autoimmune diseases, physical disabilities, or chronic illnesses. Some people come to making as a form of physical therapy, some people come to making during an injury when they need to let their bodies heal. This community seems to draw in people who have limitations.
Making allows us to explore in ways that honor our limitations. We get to feel accomplishment on our own terms, learning on our own terms, and exploration on our own terms. Making can serve as a distraction from our pain, our uncertainty, and even our own mortality. And we can give that joy and experience back to our community to be seen and valued despite our limitations. We can read about Estonian culture and knit an Estonian shawl, we can research Peruvian textile culture and weave traditional patterns. While our bodies may require us to shrink our worlds and our access, we can expand our minds through our making. And we can do it all from our beds between naps. We are so often overlooked or underestimated in society, but making helps us value ourselves and our abilities.