Tracey MacCharles, who has a son with special needs, knows what it’s like to advocate for a child and be forced to use person resources to find help.Fred Lum/The Globe and Mail
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Tracy MacCharles broke down in the legislature last week, struggling for words and fighting back tears. It was an unusual display for a cabinet minister, especially Ms. MacCharles, Ontario's Children and Youth Services Minister, who is usually so matter-of-fact.
But it was an unusually heated Question Period. Parents of children with autism, seated in the public galleries above the chamber, were shouting down at the government bench – "liars" and "shame on you." They were – and still are – angry over the Wynne government's decision to adopt a new autism program that they say will deny their children essential therapy.
As the minister responsible for delivering this program, Ms. MacCharles is at the centre of a hugely emotional debate in the province. And to these parents, she is the bad guy.
Ironically, however, she knows what they're going through – which, in part, explains the tears.
"I'm human," she says.
Ms. MacCharles, 52, is the mother of a son with special needs. "Certainly, it was very relatable for me," she says about the tense Question Period. "We all want the same thing for them – to reach their full potential."
Her son is a young adult now and doing well. He is a twin. He and his sister were born prematurely, and there were some complications. Ms. MacCharles fiercely guards their privacy, and will not say how old they are or give their names.
She knows, however, what it's like to advocate for a child, to search for information, to have a child on a waiting list and then be kicked off, and to have to use personal financial resources to try to help.
"I've been there. I've done that," she says.
Much of Ms. MacCharles's life has been like that.
When she was 17, she was diagnosed with the same kind of bone cancer as Terry Fox. Ms. MacCharles was just hours away from having her left leg amputated – that was the treatment then – when she was sent to Philadelphia for a new surgery that saved the limb.
Her surgeon at Toronto's Hospital for Sick Children knew an American surgeon whose treatment involved rebuilding the leg with stainless steel parts. She was told the metal "probably wouldn't last forever."
Back in Canada, she remembers Terry Fox "literally running down University Avenue [where SickKids is located] when I was doing chemo." More than 30 years later, just after she was first elected to the Ontario Legislature in 2011, representing a Toronto area riding, the metal in her leg snapped in two. For a time, she was left navigating the corridors of Queen's Park in a wheelchair and "on ridiculously high doses of painkillers" as doctors figured out what to do.
Finally, the metal parts were replaced at Mount Sinai Hospital – across the street from SickKids – and she now walks with the use of a cane.
But that's not all. A year before she was elected, she was diagnosed with breast cancer.
"It's probably just bad luck, bad luck," she says about the cancers.
After a 10-year career as a provincial public servant, and several years working in the private sector in the human resources field, Ms. MacCharles decided she wanted more flexible work hours to be able to be at home with her children. She established a consultancy practice and got involved in volunteering in her community in areas around disabilities and inclusion.
When the MPP in her riding retired, Ms. MacCharles, who knew how government worked but was not a political person, became intrigued and decided to seek the nomination. It was contested, and competitive. She was recovering from her breast cancer treatment – and she won.
"In my career, I don't plan it, but doors open and I walk through them," she says.
Ms. MacCharles defends the government decision to meld two therapies for autistic children – Intensive Behavioural Intervention (IBI) and Applied Behaviour Analysis (ABA) – into the Ontario Autism Program. The waiting list to access IBI, for example, was on average more than two years.
"We are dealing with an unsustainable situation," she says. The new program will reduce the list to six months by 2021, the government has said.
Kristen Ellison, meanwhile, was in the public gallery during that emotional Question Period. She didn't feel Ms. MacCharles's tears were sincere.
Ms. Ellison is a single mother from Cobourg, east of Toronto, and her five-year-old son Carter is autistic, still wears diapers and barely speaks. After being on the waiting list for IBI therapy for more than three years, her son finally started it this week. But it's not clear how long he will be able to continue because of the changes.
"It feels like I am mourning a death. I dream about my kid talking and what his voice might sound like," she says. "Now we are getting the therapy … Now I am going to get to see how well it works and be terminated prematurely."