Shortly after my son was born in November 2019, I began experiencing pain in my knees, with the stiffness being particularly bad in the mornings. It was something I shrugged off as being low on my list of worries at the time: recovering from an emergency caesarean, difficulties breastfeeding due to my son’s tongue tie, trying to get enough sleep… But then I woke up one morning and the pain had spread to my wrists. I struggled with the simplest tasks: lifting my son out of his cot, undoing the poppers on his bodysuits, trying to open jars and chop food. I started to get worried. Due to COVID-19 there were no face-to-face appointments at my GP surgery and I was offered a telephone consultation instead. The practice nurse I spoke to was far from helpful. Did she think the pain in my knees and the pain in my wrists was in anyway related? No she didn’t. What should I do to try and alleviate the pain? Wear wrist supports. I felt utterly deflated.
Over the next couple of months the pain got worse and worse. It got so bad that I struggled to walk up and down the stairs. My mental health deteriorated rapidly. I was constantly snapping at my husband, I felt tearful on a regular basis and crippled by apathy. In desperation I contacted my GP surgery again, and to my relief I wasn’t fobbed off this time. The doctor I spoke to was very sympathetic. He referred me to a physiotherapist and ordered blood tests to check for signs of inflammation. The blood tests showed my haemoglobin levels were a little on the low side, but were otherwise clear, and the physiotherapist prescribed me strengthening exercises for my joints. They seemed to work initially, but when progress stalled some weeks later, he became concerned. More blood tests were ordered and I was referred to the rheumatology department of my local hospital. This time the blood tests did show high levels of inflammation. At the hospital they did ultrasounds of my wrists. The consultant gave me my diagnosis: rheumatoid arthritis.
I wanted to cry, but managed to hold it together until I got outside. I walked home on auto-pilot, eyes blurred with tears. I was in such a daze that I discovered the next morning that I had left my keys in the lock of the front door. Thank God we weren’t burgled! The diagnosis was something I expected and dreaded, but somehow it still came as a surprise to have it confirmed. Hearing the words said aloud made it real all of a sudden. After the initial shock had worn off I started to feel more positive. I’m a stubborn woman and refuse to be defined by my condition. Although that’s obviously not to say I don’t have bad days, when the pain is particularly acute and I despair of ever feeling ‘normal’ again. Which is why I find it inspiring reading about disabled women activists who have rejected the notions that disabled individuals are inferior, in need of saving, or victims that should be pitied. I have chosen Cheryl Marie Wade as the subject of my sixth blog post because she offers an alternative model of disability activism. Rather than protesting or seeking policy reform, Cheryl combatted the stigmas of women’s disabled bodies and challenged stereotypes of disability through her performance poetry.
Cheryl was born in Vallejo, California, on March 4, 1948. Her mother was a bookkeeper, and her father was a salesman. Cheryl suffered plenty of hardship as a child — money in the household was tight, her parents drank too much, and she was sexually abused by her father. At age 10, Cheryl was diagnosed with juvenile rheumatoid arthritis:
“Big toe, thumbs, wrists, and then everywhere just started hurting, all the joints started hurting,” she said. “Wrists particularly, wrists and thumbs and knees.”
By 16 Cheryl was using a wheelchair, first some of the time, but soon all of the time. She graduated from the high school at Stanford Children’s Hospital and briefly attended a community college in Marin County, but gave it up due to physical and emotional difficulties. She entered what she described as a bleak period of isolation that lasted almost a decade, until a doctor who had performed surgery on her knees introduced her to an electric wheelchair, that “changed my life”. In 1974 she gave the College of Marin another try and found that there was now a community of students with disabilities there. She soon became involved in working with the Disabled Student’s Union; eventually becoming its president and a member of the student government.
Cheryl then went to study at the University of California, Berkeley, after discovering there was a resident program for students with disabilities, which supported them to live on their own, something she had previously been unable to do. She earned a master’s degree in psychology and began writing essays, short stories and poems. But few of these pieces were about disability or her experiences with it, until a friend brought her into Wry Crips, a Berkeley writing and performance group made up of women with disabilities, in 1985.
“What was fabulous about it,” she said, “was the feeling of being free to have a voice as a cripple woman, being free to sort of experiment with what I wanted to say about it, because I had no thoughts of saying anything about it until I joined them.”
In the late 1980s, Cheryl was also one of the founders of AXIS, a dance troupe made up of artists with disabilities. Judith Smith, a co-founder of AXIS Dance Company, was in Wry Crips with Wade during its early years. Judith says Cheryl was a powerhouse in the group and influenced many young women with disabilities: “She was an incredible mentor for the young women who came through Wry Crips.”
In addition to finding her writing voice, Cheryl discovered the liberating power of performing.
“Being so sassy, and so out there, and so in your face that you can’t deny me — that only came by the safety of the spotlight,” she said. “I know that sounds crazy to people who’ve never been onstage, but it was years of doing that onstage before I ever felt comfortable doing it in life. The more I played the sassy girl, the more I was her as a cripple.”
In 1989, Cheryl left Wry Crips to purse a solo career. She created and performed in two solo shows, A Woman with Juice, and Sassy Girl: Memoirs of a Poster Child Gone Awry. Sassy Girl was showcased at the prestigious Mark Taper Forum’s New Works Festival. Cheryl was one of the first disabled performers to make effective use of video, producing many award-winning videos, including Here, Body Talk, and Disability Culture Rap — which won best of festival at the Superfest International Film Festival. “Here,” a collage of her poetry performances, included a scathing section on medical indignities visited upon her, whilst “Disability Culture Rap” was more political, exploring disability history and issues like assisted suicide, something she viewed as a threat to people with disabilities that was masked in soothing terms like “death with dignity.” In 1997 she wrote an essay on the subject for the disability journal Ragged Edge, arguing that the “death with dignity” movement sprang from the idea that only perfect bodies were worthy bodies and was a response to the increased visibility of people like her in society:
“Instead of trying to fade into the nooks and crannies as good cripples of the past were taught to do,” she wrote, “we blast down the main streets in full view, we sit slobbering at the table of your favourite restaurant, we insist on sharing your classroom, your workplace, your theatre, your everything. The comfort of keeping us out of sight and out of mind behind institutional walls is being taken away. And because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape.”
Cheryl was 65 when she died of complications of rheumatoid arthritis in 2013 in Berkeley. But she had her own definition of death:
“Shame is the big killer of us,” she told a conference in 2000. “Shame and isolation, not our particular disability.”
Cheryl is such a wonderful role model because, in the words of her friend Judith Smith, “She embodied and modelled disability pride before it was a thing.” Another friend, Leroy Moore, agrees: “She’s one of the people that gave us a sense of pride and culture through her art.” Both friends feel it is important that Cheryl’s work is remembered, with Judith saying “I hope everybody in the disability community and disability arts will keep her name alive, because it’s important work — historically and culturally important.” So it seems fitting to end this post about the self-proclaimed “queen mother of gnarly,” with her poem “Hands,” which Cheryl used to perform with her arthritis-distorted hands front and centre:
Hands
Mine are the hands of your bad dreams.
Booga booga from behind the black curtain.
Claw hands.
The ivory girl’s hands after a decade of roughing it.
Crinkled, puckered, sweaty, scarred,
a young woman’s dwarf knobby hands
that ache for moonlight — that tremble, that struggle.
Hands that make your eyes tear.
My hands. My hands. My hands
that could grace your brow, your thigh.
My hands! Yeah!
Bibliography
Boatman, Mark. “Cheryl Marie Wade — 1948-2013.” New Mobility. 2013. https://www.newmobility.com/2013/09/cheryl-marie-wade-1948-2013/ [Accessed 25 February 2021]
Genzlinger, Neil. “Overlooked No More: Cheryl Marie Wade, a Performer Who Refused to Hide.” The New York Times. 2020. https://www.nytimes.com/2020/07/23/obituaries/cheryl-marie-wade-overlooked.html [Accessed 25 February 2021]
Lew James, Whitney. “Women's Disability Activism: A Timeline.” 2017. http://whitneylewjames.com/disability-activism/ [Accessed 25 February 2021].
Marie Wade, Cheryl. “Thoughts on the 'Right to Die with Dignity”. Ragged Edge. 1997. http://www.raggededgemagazine.com/archive/onedge.htm [Accessed 25 February 2021]
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