Judith Snow: Advocate for inclusion  was ‘a visionary’

JAMES CULLINGHAM

Special to The Globe and Mail

Published Tuesday, Jun. 30, 2015 7:59PM EDT

Although Judith Snow suffered from a condition that eventually denied her all movement below the neck, she had a full life as a writer, actor, artist, Communist, educator, nature enthusiast and an internationally renowned champion for inclusion.

Her friend Jack Pearpoint, publisher of Inclusion Press and former president of Frontier College, believes her life itself was an inspiration. “She was officially dead for 35 years according to the medical profession. She had been told she couldn’t live past 30. She blew them all out of the water.”

Ms. Snow, who suffered from spinal muscular atrophy, disliked the word “disability” so much that she once told a journalist she preferred the word “freak” to “disabled.” Her objection to the D-word arose from the belief that we all have limitations – even those who are not “disabled” – nevertheless, we all have gifts and contributions to make.

Ms. Snow died of a heart attack at the age of 65 in her Toronto apartment on May 31. Just an hour earlier, she had been working at her computer. The night before, she had been out attending a friend’s 65th birthday party, then stayed up until 4 a.m. playing cards with her attendant.

Judith Snow was born in Oshawa, Ont., on Oct. 29, 1949, to Rita (née Lock) and Edwin Randolph Snow. She was the third of four children. Her parents convinced a local school to accept Judith, who as a child was not able to walk, in a system that once insisted it had no place for someone like her.

That was the first act of defiance for a woman whose advocacy would eventually mean so much to others. Ms. Snow’s father told her that once upon a time someone like her would have been strangled in the rural British village where he came from because she would have been unable to do farm work. Ms. Snow says she asked him why he hadn’t strangled her. He replied that perhaps the point of her life was to find out.

Though Ms. Snow had lost all remaining, limited use of her limbs following spinal surgery in 1972, she completed a master’s degree in clinical psychology at Toronto’s York University in 1976. After graduation, her mobility deteriorated further and by 1978 she was operating her wheelchair with her thumb. She was relegated to a nursing home, but it could not meet the needs of the ambitious and peripatetic Ms. Snow, who was still running a centre for handicapped students that she had started at university.

In 1979, with her health and spirits failing, Ms. Snow revolted. She refused to return to the nursing home, taking refuge first with friends in university housing and then at the home of Jack Pearpoint and Marsha Forest, a married couple who would become close friends. The couple created the first “Joshua Committee,” a circle of friends dedicated to enabling Ms. Snow to live independently. The name came from Ms. Snow’s assertion that they would blow down walls. Through concerted political pressure they managed to obtain an Ontario Order-in-Council, providing a modicum of support for Ms. Snow to live on her own and continue her work.

Mr. Pearpoint said that Ms. Snow’s determination, “infinitely broadened the range of choices available to someone like her.” He said that opportunities for individual care – a focus of her campaign – are “dramatically improved and [have] many miles to go.”

The actions of the Joshua Committee were a launching pad for Ms. Snow’s career as an activist and educator. Through her association with the Toronto Summer Institute on Inclusion, Community and Diversity, based originally at McGill University, in Montreal, and now in Toronto, as well as the Asset-Based Community Development Institute of Northwestern University, in Chicago, Ms. Snow became a leader in a movement bent on creating opportunity. The work took her across Canada, Europe, the United States and the Caribbean.

In the summer of 1982, she met Mother Teresa at a Toronto event to promote world peace and nuclear disarmament.

On several visits to Denver, Ms. Snow met with 10-year-old Annie Green, a girl afflicted with an organic brain syndrome. The girl’s father, Mike Green, a community organizer, said that Ms. Snow helped him to see his daughter as a person, “who could have her own dream for her life” rather than someone suffering from limitations. Ms. Snow became Annie’s godmother.

Mr. Pearpoint summed up Ms. Snow’s method: “She believed everyone had a gift. What we have to do is figure out what the gift is and how to assist that person in making a contribution. Her gifts and capacities existed in a whole different frame because they came out of the mouth of someone who wasn’t supposed to be there.”

Doris McWhorter, director of the Education Research and Evaluation Strategy Branch at Ontario’s Ministry of Education, who met Ms. Snow in the 1980s, claimed, “When Judith told the story of her life, it was transformational. She had the gift of speech and the ability to communicate with a wide range of people. She was a visionary.”

Ms. Snow was interested in all spiritual expressions of love and inclusive community. Mr. Green said she was enthralled to learn more about the culture of the Navajo, whose communities they visited. Ms. Snow was also a member of the Communist Party of Canada (Marxist-Leninist) and stood as a party candidate in both federal and provincial elections. She was never elected.

Ms. Snow was a curious, demanding, generous, humorous and adventurous person. Ms. McWhorter said, “she sometimes took risks that scared the rest of us.” Ms. Snow canoed on the Madawaska and St. Lawrence Rivers in Ontario while strapped to a thwart, explored the Colorado Rockies while being transported in a hammock strung between poles – a contraption Ms. Snow dubbed her “Cleopatra chair” – and was once tugged up to the very top of a climbing wall aboard a cruise ship to espy the horizon. Ms. Snow’s friend Sandy Gray, now retired after a career in community work in Canada and abroad, said “Judith played all the odds and won.” The slide show presented at Ms. Snow’s funeral portrayed her wearing a variety of wigs and costumes and toking on a joint.

Ms. Snow assisted playwright Michael Rubenfeld in staging the 2009 play The Book of Judith, which was presented as a mock revival show with a chorus in a tent outside the Canadian Mental Health Association in Toronto. Mr. Rubenfeld conceived the work while struggling to respond to a question posed by one of Ms. Snow’s attendants: “Can you find Judith a lover?” In his discomfort with the question, Mr. Rubenfeld determined he could not find a lover, but he would write a play that addressed prejudice about the so-called disabled. Ms. Snow appeared in the acclaimed production.

Ms. Snow’s influence also extended to technology when she participated in experiments for the creation of devices to assist people like her. As an adult she lost the ability to move her right thumb to control her chair. She participated in the development of a “sip and puff” system that allows quadriplegics to command a chair by emitting Morse code through a mouth tube. She also helped form the Laser Eagles Art Guild, which assists those without the physical capacity to hold a brush to paint by laser. In 2011, the Royal Ontario Museum held an exhibition of Ms. Snow’s paintings.

“Judith wanted to explore her artistic life,” Ms. McWhorter said, “She wanted to evolve.” Mr. Pearpoint added, “She always knew she was an artist, but she had been told her whole life she couldn’t be. She discovered, ‘of course I can.’”

Mr. Green said, “Judith didn’t work on disability, she worked on community.”

Ms. Snow leaves her siblings: Ian Randolph Snow, Rosemary Anne Malo and James (Jim) Edwin Snow.