Mallory Pigage didn’t hesitate when the Yukon Human Rights Commission asked her to be in a film about how she completed a college class and lives independently, despite having intellectual and physical disabilities.
She even has a speech prepared for when Aren’t You Supposed to Be Doing Something? shows at the Old Fire Hall on Dec. 7 at noon.
Pigage graduated from Yukon College this past May with a skills for employment certificate. The course taught her how to write a resume, basic math skills, and what’s expected in the workplace.
Still, she said she knows her disabilities will make it harder for her to get a job in the “real” community.
But the 22-year-old isn’t so sure college was harder for her than it was for other students. As she says in her speech, because she doesn’t wear her hearing aids at night, the noise in the residence didn’t bother her.
And she got to live at the college, even though her family lives in town. Many of her classmates had to travel to school. That made it harder for them, she said.
“So you think your life was easier?” Her mother, Lynn, asked, sitting across from Mallory in her daughter`s living room.
“Yeah.”
“Even though it was harder for you to figure out the answers?”
“Yeah.”
“Interesting, hmm.” She paused. “I think that’s good, if that’s what you think.”
In some ways, Mallory’s life has always been harder. She was born with CHARGE syndrome, what she calls “an intellectual disability with letters I don’t understand.” CHARGE is a genetic disorder, its name an acronym for commonly-affected areas. It can cause heart problems, intellectual delays, result in underdeveloped genitals, and hearing and vision problems. According to information from the Canadian Helen Keller Centre, it affects one in every 10,000 live births. It leaves many people deaf-blind, unable to use both their sight and hearing as reliable sources of communication.
She couldn’t breathe when she was born and had a loonie-sized hole in her heart. The hole healed on its own, but she needed surgery so she could breathe. She was medevaced to Edmonton in an incubator while her mother stayed in Whitehorse General Hospital’s maternity ward with a Polaroid picture of her daughter. Lynn spent another night at home before heading to Edmonton to be with Mallory.
But as Lynn related these details, her daughter gazed at her iPhone 3S.
Mallory functions at a much higher level than many people with intellectual disabilities, her mother said. She reads, for pleasure, at a Grade 6 level, but her social skills are more comparable to a 14-year-old, she said.
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She uses hearing aids in both her ears and doesn’t have depth perception since she can only look out one eye at a time. Mallory didn’t walk until she was three. She began using sign language at the same age. She started talking between Grades 1 and 3, and rarely signs anymore. She entered kindergarten wearing diapers.
School was always a challenge for her, especially math, said Mallory. She attended classes in a regular classroom until Grade 4 at Jack Holland Elementary School, before switching to a segregated class at Takhini Elementary. She stayed in segregated classes until she completed high school at Porter Creek Secondary School.
She wanted to go to university, just like her older brother did. When she mentioned this to her mother, Lynn’s response was: “Good luck.”
She knew her daughter wouldn’t meet the academic requirements for university. But after speaking with officials at Yukon College, Mallory was allowed to enroll in the skills for employment class.
The Pigages have always been realistic with their daughter about what she can and can’t do, said Lynn. “We don’t mince words with her, and I think it’s been better than giving her false hope about, ‘You know, oh yeah, I think if you try really hard, you’ll get to go to university.’ Um, no. It’s hard to explain. It makes me sound like a really bad person, but for her, I think it was the best approach,” she said.
Disability can be a hard thing to approach.
“We have a saying that we use in disability training and that’s, ‘The person with a disability doesn’t have a handicap until they face a barrier,” said Rick Goodfellow, executive director of Challenge, a not-for-profit that provides job training for people with disabilities.
But there are barriers to removing barriers. Goodfellow worked on the UN Convention on the Rights of Persons with Disabilities, which was adopted in 2006. Canada ratified it in 2010. But compliance is voluntary, and there’s no system to ensure the country is following the convention, he said.
And federal cuts in the social sector have permanently changed how national boards work, he said. That’s partly why he recently stepped down from the national boards of the Active Living Alliance and Independent Living Canada.
He also recently stepped down from the Yukon Human Rights Commission, “for personal reasons,” he said.
While the territory has a reputation for supporting people with disabilities, there’s still a lot more that can be done, he said. There’s no accessible public transportation outside of Whitehorse, and even Whitehorse’s system has limitations. It can be hard to get to the stops in the winter, said Goodfellow, who uses a wheelchair. And safe, affordable housing remains a main concern for many people, he said.
Right now, that isn’t a concern for Mallory Pigage. She moved into her own apartment this past spring because “she wanted to escape from her parents,” she said. She’s taking a correspondence course about how to use Microsoft Word, and works at Challenge.
But she knows things are different for her.
The “R” in CHARGE stands for “the dreadful R-word,” said Lynn.
“Retarded,” Mallory interjected.
“Thank you, Mallory,” her mother responded.
Mallory’s not concerned about what people will think after they see the film.
“Because it’s just me, and everybody knows me,” she said.
Lynn Pigage agrees.
“She’s embraced her disability and run with it,” she said.
Aren’t You Supposed to be Doing Something? is showing as part of Disability Awareness week, which runs from Dec. 2 to 8. The International Day of Persons with Disabilities is Dec. 3.
Contact Meagan Gillmore at
mgillmore@yukon-news.com