Community remembers humble fighter for disability rights

·4 min read
In 1982, Justin Clark battled his family in court for the right to leave the institution he was placed in at age two.  (David Gutnick/CBC - image credit)
In 1982, Justin Clark battled his family in court for the right to leave the institution he was placed in at age two. (David Gutnick/CBC - image credit)

An Ottawa man is being remembered for his contributions to disability rights, his fight for recognition and his strong desire to be with the family he was isolated from at a young age.

Justin Clark, born with cerebral palsy, won a landmark case in 1982 to live independently. He died last week at The Ottawa Hospital at 58 years old.

Born in 1962, Clark was institutionalized at the now-defunct Rideau Regional Centre located in Smiths Falls, Ont., by age two at the recommendation of doctors.

While Clark fought his parents in court when he was 20, lifelong friend and former caretaker Normand Pellerin said Clark's journey began, in part, with a deep desire to be closer with his family.

Pellerin held Clark's hand when he passed away on Thursday.

A court sketch from Clark's landmark case in 1982 to live independently.
A court sketch from Clark's landmark case in 1982 to live independently.(Submitted by David Baker)

"He was not afraid at all. It was a peaceful, peaceful departure," he said. "What we had chatted [about beforehand] is that he [will] be dancing with his mom."

Pellerin said he'll miss his friend's humanity, humility and his ability to laugh at life.

Justin was a person who loved a lot of people, but he has been loved a lot too. - Normand Pellerin, Clark's friend and former caretaker

In 1982, Clark fought an application — ultimately taken to trial by his parents — to have him declared incompetent, incapable of making personal decisions.

The issue came to a head when Clark decided he wanted to leave the institution and live in a group home in Ottawa.

While Clark's parents were villainized at the time of the high-profile case, Pellerin said no one can know the burden felt by them, caring for five children already. They believed they were doing what was best for Clark, Pellerin said.

"Justin was wounded in that story, but the parents, too," he said.

"It was a societal mistake — not the Clarks'," he said. "With the court case, they have to carry that on their shoulders. They're dead and they're buried and they still have to carry that."

Justin Clark, right, found himself at the centre of a high-profile trial. It was considered a breakthrough in Canada. John Clark, his brother, is photographed on the left.
Justin Clark, right, found himself at the centre of a high-profile trial. It was considered a breakthrough in Canada. John Clark, his brother, is photographed on the left. (Submitted by John Clark)

Able to communicate with Blissymbolics — a board that allowed users to communicate by pointing at symbols — Clark retained lawyer David Baker to represent him in his bid to prove he was mentally competent and could make his own decisions.

The lawyer said if there's something he's proudest of, it's letting the young Clark tell his own story using Blissymbolics. It was the first time the symbols were used in testimony in a Canadian courtroom.

"His parents stood up and applauded his testimony," the lawyer said.

Melanie Panitch was in the courtroom for the six-day trial and later taught the case during her disability studies classes at Ryerson University.

"What's significant about this case is that it's history being told by Justin," she told CBC News, "by someone who has lived experience of disability."

Relationship a highlight of life, says brother

After Clark left Rideau Regional Centre, he began to explore life in every way he could — travelling the world and going on canoe trips — not letting cerebral palsy hold him back, said his brother John Clark.

He calls building upon his relationship with his younger brother a highlight of his life.

Clark went to "extraordinary efforts" to forge stronger bonds with family once he left the institution, John said by phone on Monday.

"I could imagine, if I were in his shoes, having been disconnected from my family for 18 years, it would be easy for resentment to build up," he said. "But it never did."

Justin Clark, left, known for his contributions to disability rights, died on Thursday. His brother is on the right.
Justin Clark, left, known for his contributions to disability rights, died on Thursday. His brother is on the right.(Submitted by John Clark)

While they once sat on opposite sides of the courtroom, John remembers his father saying the words, "Justin, my son," repeatedly at a private ceremony following the funeral of his wife.

And at the end of his life, Clark was joined — over FaceTime — by family members.

"Justin was a person who loved a lot of people, but he has been loved a lot too," Pellerin said.