Wednesday, April 21, 2021
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Egan: Justin Clark, gentle giant of disabled advocacy, dies at 58

Egan: Justin Clark, gentle giant of disabled advocacy, dies at 58
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” ‘I go forward’ was a phrase he often used, a kind of life motto.”

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Though Justin Clark struggled to communicate with any ease in life, his legacy is how clearly he was heard.

A pioneer in the struggle for the disabled to be accepted as fully human, Clark died at the General campus of The Ottawa Hospital early Thursday morning. He was 58.

“I just fell in love with the wonderful soul that he was,” said friend Robbie Giles, who first met Clark when he was a 10-year-old boy living at Rideau Regional Centre in Smiths Falls — the 1960s version of where the severely disabled belonged.

“You just knew, there is something going on behind those eyes.”

Born in 1962 with cerebral palsy, unable to walk or talk, he spent his childhood in that sprawling institution and, upon turning 18, was shortly after at the centre of a nationally covered court case to take charge of his own affairs. (It began, of all things, over his desire to go on a supervised camping trip, which his parents opposed.)

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By winning the landmark decision in 1982 — Clark testified with such great effort, he was left sweating on the stand — he helped change the societal convention that the disabled should be “put away” and not integrated into the daily life of a community.

He was not a “mentally retarded” man who could not learn, the court found. He was a “gentle, trusting, believing spirit” and “very much a thinking human being,” the judge ruled, giving him control of his own affairs.

Though his body was badly twisted, Clark learned to communicate with a pallet containing letters and symbols — the early blissboards —  which evolved into a computer screen that would activate a synthesized voice.

For most of his adult life, he lived in a group home called Ottawa Foyers Partage in suburban Ottawa. Despite having to use a heavy motorized wheelchair, he travelled all over Canada and the world — trips that usually had a hiccup or two.

He was a frequent speaker at conferences or church groups, using a combination of video and audio to tell his story. Remarkably, he was not bitter about his station in life or the way he’d been separated from his family as a child.

“I know he was a happy person,” said Giles, noting that Justin liked the odd rum and coke. “I think he had to struggle with what he was dealt with. But I think of the trips we went on, the hilarity. He loved being with people, experiencing everything that life could give him.”

“He did nothing but give of himself,” a friend said of Justin Clark, seen in 2014.
“He did nothing but give of himself,” a friend said of Justin Clark, seen in 2014. Photo by James Park /Ottawa Citizen

In fact, “I go forward” was a phrase he often used, a kind of life motto.

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“You couldn’t keep him down. He wanted to visit Jean Vanier in Europe. He wanted to go on a Caribbean cruise, he wanted to be with his siblings.”

He is survived by three sisters, Alexis, Maura and Noelle, two brothers, Kerry and John, and eight nieces and nephews. Inasmuch as the trial was a distressing experience for the family, “they came to have their brother back,” said Giles.

Indeed, in interviews with writers over the years, he was careful not to say anything negative about his parents and spoke of how much he cherished the time with his siblings.

I once spent about an hour in a room alone with Justin at his workshop, ComputerWise on Eccles Street, where he made, among other things, custom greeting cards and calendars. There was, indeed, much going on behind those eyes.

It was an unnerving experience. It took five or 10 minutes for him to type out a short answer, a process that appeared painful and laborious. But he smiled a good deal, despite all the shaking. Later, of course, the lesson was learned: he was accustomed to teaching the abled world — reporters included — to be more patient and accepting, while at the same time reconsidering what we collectively mean by “disabled.”

“He did nothing but give of himself,” said Giles. “I never heard an angry word or a judgment on anybody from him.”

He is to be buried beside his parents, Ruth and Ronald. A memorial celebration will be held later. Rideau Regional, which once housed as many as 2,650 in a complex of buildings, closed in 2009.

“Many of Justin’s friends have been in his life for decades and have made the journey with him from Rideau Regional,” the family wrote in his death notice.

“They have loved Justin, supported him, and made so many things possible for him. The family is profoundly grateful for their presence in his life.”

To contact Kelly Egan, please call 613-291-6265 or email kegan@postmedia.com

Twitter.com/kellyegancolumn

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