Wednesday, December 4, 2013

A voice for Andrew

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.


Brilliant. And very moving -- thank you, Louise, for highlighting people like Holly. And please let Holly know how important her voice is, not just to people with disabilities, but to the siblings of those with disabilities.

Amazing sister. Thank you for highlighting her words. But hopefully Holly will also read these comments and know that her voice is important not only for others with disabilities but for siblings of those with disabilities as well. I wish her ll the luck with university I know she will go far. Perhaps one day I will get a chance to work with her

Thank you for this article. And thanks to Holly and all the wonderful young people out there who help raise the voices and profiles of their siblings!

What a fabulous initiative by the Provincial Child and Youth Advocate. Irwin Elman is the greatest!!!

Very saddened by the events described but so happy she was such a voice for her brother. Is there any way to hear the song she wrote? That would be great if she put it on YouTube and could share a link. Would just love to hear it. Holly, we're so very sorry for your loss.

Thank you BLOOM for writing such a beautiful piece for Andrew. Thank you for everyone's support. I will try to put my music on youtube :)

I loved this article reminds me of my son Bear♥♥♥ Your articles are amazing Louise what a sweet young lady so heartbreaking what happened to her brother Andrew.. Hope her family is doing the best they can prayers & hugs for them all...