Holly Zhuang's brother Andrew (above left) died in September. Holly spoke for him and 300,000 Ontario children with special needs at a meeting held Tuesday by the Provincial Advocate for Children and Youth to explore ways to make youth with disabilities better seen and heard.
Holly described how Andrew's severe cerebral palsy gave him "little to no control" over his body, yet he developed a unique method of moving his tongue to communicate yes or no. "It was his outlet, his voice," she told a room of professionals who were gathered to brainstorm ways to raise the visibility of youth living with disability in Ontario.
Yet while Andrew's family understood his language, Holly told the story of one doctor who didn't take the time to decipher it.
Andrew "battled many illnesses," she said. In November, 2012, he had surgery to reduce his tight muscles.
Because of his spasticity, the stitches ruptured post-surgery. A medical resident "decided independently to stitch up his wound without anesthetic," Holly said, a total of seven stitches.
Andrew couldn't verbally protest this barbaric treatment the way other youth could.
"...I realized this nightmare occurred not because the intern didn't have enough time or didn't have a choice, but because my brother didn't have a voice."
Holly said she was excited to be part of the Provincial Advocate's efforts "to elevate the voices of non-verbal children."
She sang a song she wrote called Angel Breathe to describe her emotions when her brother suffered.
"I'm howling at the moon
Pouring my sorrow all to you
That's the only way I know how to numb myself."
Holly spoke of Andrew's "strength and courage and unbreakable will to live... To me he is my brother and our life was normal."
Now a music therapy student at Wilfred Laurier University, Holly said: "Andrew helped me become who I am."
BLOOM will report on the recommendations that come out of the Provincial Advocate's work.