Disability Digest #10 (March 19–25)

Al Etmanski
6 min readMar 15, 2021

--

Power of Disability Digest
Photograph of the infinity mirror room reflecting hundreds of glowing orbs
Yayoi Kusama’s Infinity Mirror Room, Nov 2019 in NYC

Dear Reader

This issue of the Disability Digest highlights Valerie Rose the daughter of singer Phoebe Snow, actor and playwright James Sanders, Chinese poet sensation Yu Xiuhua, and the most popular artist in the world, Yayoi Kusama.

The world would be a less vibrant place without their presence and contributions don’t you agree?

Thanks — Al

This week in history …

On March 19th Phoebe Snow’s daughter Valerie Rose died (2007). Valerie Rose was born in 1975, the same year her mother’s debut album turned gold. It included the song Poetry Man. The popular perception was that Snow threw her singing career away to care for her daughter. She may have left the fast track but she never stopped recording. “I have to do my career and I have to be a mother,” Snow said. “These are my two responsibilities. Of course the baby comes first.”

Snow refused the advice of doctors to place her daughter in an institution. “Out of the question. I would never do that. All I know is the moment I saw my daughter I fell in love with her,” she said. Snow told her daughter’s story at every concert. “Tonight, and every night for the rest of my life, I will dedicate every show to my daughter Valerie Rose.“ You’re My Girl off her 2003 album Natural Wonder was written for Valerie Rose who predeceased her Mom by 3 years.

Snow’s eulogy for her daughter included the following: “She loved dolphins and whales, classical music, swimming pools, flirting shamelessly, colourful t-shirts, rice pudding, popcorn and spaghetti. She was an outstanding, joyfully sloppy eater…She woke up singing every day. She laughed out loud during love scenes in movies. She laughed right out loud at the punch line of dirty jokes…”

head shot of a smiling middle aged man dressed in a blue jean jacket

March 20th is the birthday of actor, writer, and theatre impresario James Sanders (1970). During his third semester in theatre school, Sanders became quadriplegic as the result of a spinal cord injury. After a year of rehab, he returned to school to complete his training. Sanders believes the attitudinal barriers towards a person with a disability are more difficult to navigate than the physical barriers. He is the founding Artistic Director of Realwheels Theatre. In 2007 he wrote and starred in the award winning SKYDIVE a unique theatrical presentation in which Sanders and his non-disabled co-star literally took to the air soaring above the stage floor for the entire play.

Sanders makes sure that people with disabilities and their challenges are authentically portrayed in all his shows. He views disability as, “the landscape upon which universal issues are discussed — questions of identity and questions of what’s real. It just so happens that we have characters with disabilities telling sections of the story.”

Sanders can be seen currently on the Vancouver-shot Apple TV+ series Home Before Dark.

6 members of Drag Syndrome colourfully dressed and wearing jewellery seated and looking at the camera

March 21st is World Down syndrome Day. For a different take on a disability that affects five and a half million people worldwide check out Drag Syndrome. They are a boundary pushing, British art collective comprised of professional entertainers with Down syndrome. “What’s wrong with being confident,” says Davina Starr pictured above, seated on your right.

A 6 minute film about Drag Syndrome won Jess Kohl best Director at the 2021 Fashion Film Festival Milano.

For an original jazz track by Sting starring people with Down syndrome check out this new music video.

woman with drak hair, wearing glasses and smiling at the camera

On March 22nd Chinese poet Yu Xiuhua was born (1976). Her poem, Crossing Half of China to Sleep with You made her an overnight sensation and the voice of a rising feminist movement in her country. Yu Xiuhua says the title was a joke and the poem’s deeper meaning was about expressing her emotions and desires. Here is an excerpt:

“Across China, everything is happening: volcanoes erupting, rivers running dry, prisoners and exiles are abandoned, elk and red-crowned cranes are under fire.
I brave a hail of bullets to sleep with you. I compress countless dark nights into one dawn to sleep with you.”

Yu Xiuhua has a reputation for not backing down from a fight. Whether it is against being labelled a peasant poet because she lives in rural China. Or a disabled poet because she has cerebral palsy.

Yu Xiuhua’s arranged marriage was loveless. She began writing poetry at 27 saying she needed to do something to keep her spirits up. Once she became famous she used her book royalties to buy her husband a separate house and then divorce him.

Still Tomorrow is a documentary about her rise to fame and her refusal to live a life without love. Poetry, says Yu Xiuhua, is her spiritual walking stick when she is stumbling around in life. “Without poetry, life is empty…poems give me peace and tranquility.”

elderly woman with red hair, with white polka dotted red dress red dress

March 22 is the birthday of artist, sculptor and designer Yayoi Kusama (1929). She was an integral part of the 1960s avant-garde scene in New York. The painter Georgia O’Keeffe was her business adviser. She became friends with Andy Warhol and influenced his painting style. In the early 70s the hallucinations that she had experienced since childhood increased in intensity. She returned home to Tokyo and checked herself into a psychiatric hospital where she still lives. The art world forgot about her for decades.

Today she is the most popular artist in the world, as calculated by the number of people who attend her installations in museums and art galleries. Kusama is called the “priestess of polka dots” because she paints polka dots on everything. She says it is her response to the waves of infinity and nothingness that threaten to dissolve her. Her most famous installation is the mirrored Infinity Room. Inside the room the individual appears to be surrounded by floating orbs of every size, glowing and constantly changing colours. Kusama wants us to feel humbled. “Our earth is only one polka dot among million of stars in the cosmos,” she said. “Forget yourself. Become one with eternity. Far beyond the reaches of the universe, infinity is trying to communicate with us.”

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Twitter


Facebook


Linkedin

Originally published at Al Etmanski.

--

--

Al Etmanski

1. community organizer/social entrepreneur/writer 2. Family member, disability movement 3. Blog www.aletmanski.com 4. Latest book #impact6