Niet meer over het hoofd gezien: Cheryl Marie Wade, een artiest die weigerde zich te verbergen

Niet meer over het hoofd gezien: Cheryl Marie Wade, een artiest die weigerde zich te verbergen

augustus 25, 2020 0 Door admin

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Going public with her disability helped her cope with the pain and hardship she felt.

Credit…Joegh Bullock

Overlooked is a series of obituaries about remarkable people whose deaths, beginning in 1851, went unreported in The Times. This latest installment is part of a series exploring how the Americans With Disabilities Act has shaped modern life for disabled people. Share your stories or email us at ada@nytimes.com.

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For as long as there have been people with disabilities, the able-bodied world has made clear to them, in ways subtle and not-at-all subtle, that it prefers them to be unseen, except for the occasional feel-good photo op, and that it definitely prefers them to be unheard.

Cheryl Marie Wade was having none of that.

Beginning in the mid-1980s in the San Francisco Bay Area, Wade turned her experiences as a woman with severe rheumatoid arthritis into performance poetry, one-woman shows and films that were funny, moving, startling and, above all, unsparing.

Her work explored subjects few people thought about if they thought about people with disabilities at all: body image, sexuality, depression, invasive medical procedures, isolation. “The queen mother of gnarly,” she called herself, a sensibility embodied in her poem “Hands,” which when she performed it featured her arthritis-distorted hands front and center:

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!

“She embodied and modeled disability pride before it was a thing,” Judith Smith, who worked with her in two Bay Area performance groups, Wry Crips and Axis Dance Company, said by email. “Cheryl was unapologetic, proud, complex and loud.”

Wade was 65 when she died of complications of rheumatoid arthritis in 2013 in Berkeley, Calif. 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.”

Wade was born in Vallejo, Calif., on March 4, 1948. Her mother was a bookkeeper, and her father was a salesman. Money was tight in their household, but her father was a bit of a raconteur, and she apparently learned that skill remarkably early.

“My mother would always tell this story about my brother’s first word and how it happened,” she said in an oral history recorded in 2003 for the Disability Rights and Independent Living Movement Oral History Project in Berkeley. “He was sitting at the table with my grandma, and he looked out the window and he pointed out and he said, ‘bird.’ And that was his first word. And I would say, ‘What was my first word?’ My mother would always say, ‘You didn’t have one. You just had a first monologue.’”

She had plenty of hardship as a child — her parents drank too much, she said, and she has mentioned often being sexually abused by her father. At 10, rheumatoid arthritis manifested itself intensely.

“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 she 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 tried attending the College of Marin, a community college in Marin County, Calif., but gave it up after a short while, weighed down by both physical and emotional difficulties. She entered what she described as a bleak period of isolation that lasted almost a decade.

But she fought through it, and when a doctor who had performed surgery on her knees introduced her to an electric wheelchair, that “changed my life,” as she put it. In 1974 she gave the College of Marin another try and found that there was now a community of students with disabilities there.

“The only time I had ever been around crips was at hospitals,” she said. She plunged into work with the Disabled Student’s Union; eventually she became its president and a member of the student government.

And she learned about a resident program for students with disabilities at the University of California, Berkeley, one that provided support for them to live on their own, something she had never been able to do.

Image
Credit…Brenda Prager

She earned a master’s degree in psychology at Berkeley, and she began writing essays and short stories, along with the occasional poem. But few of these pieces were about disability or her experiences with it. That changed when 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 addition to finding her writing voice, she 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.”

“Sassy Girl: Memoirs of a Poster Child Gone Awry” was the name of a solo theater piece she developed, one of several she performed in the Bay Area and beyond over the years. In the late 1980s she also was a founder of Axis, a dance troupe made up of artists with disabilities.

Wade also made short films. “Here,” a collage of her poetry performances, includes a scathing section on medical indignities visited upon her. “Disability Culture Rap”is more political, racing through disability history and name-checking issues like assisted suicide, something Wade 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 Electric Edge, the web edition of 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 favorite restaurant, we insist on sharing your classroom, your workplace, your theater, 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.”

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