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'What I want is for them to see who I am and not the disability'

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Connor Beaton, left, Jacob Kudlak, Alannis McKee and Sasha Clouston are four of the trailblazers behind Voices for Youth: Northern Narratives on Disability. The publication features 12 youth from Yellowknife and across the NWT, telling their own stories of challenges, successes, hopes, dreams and their daily lives lived with a disability. Emelie Peacock/NNSL photo

Youth are often missing from the conversation on what it's like to live with a disability in the North, something a new book of narratives aims to change.

Twelve young people from Yellowknife and the communities of Hay River and Aklavik are sharing their stories for the first time in the publication Voices of Youth: Northern Narratives on Disability.

Publication founder Alannis McKee wants every MLA and every member of the Department of Health and Social Services and Department of Education, Culture and Employment to read it.

Connor Beaton, left, Jacob Kudlak, Alannis McKee and Sasha Clouston all met at St. Patrick High School's Best Buddies club. They shared stories of coming out of their shell and coming into their own while at high school, and are now sharing their stories of living with disability in a new publication called Voices of Youth. Emelie Peacock/NNSL photo

Sasha Clouston, a 21-year-old Yellowknifer living with cerebral palsy and right-handed hemiplegia – paralysis of one side of the body - said she was nervous at first to share her story with the world. Yet having gone through a move from the U.K., losing employment and facing challenges interacting with the community, she is motivated to spread understanding of who she is beyond the disability she lives with.

“A lot of people in my life do see the disability before they see the person and that's not what I want,” she said. “What I want is for them to see who I am and not the disability.”

McKee pointed to a lack of stories about NWT youth with disabilities because most often there is a focus on early childhood or the elderly.

The narratives, told in an question-and-answer format, illustrate some of the difficulties youth in the North face, such as finding employment, getting around, self-isolation and finding acceptance.

“What we need in our community is spaces for people to have genuine interactions with people that are open-minded and willing to be flexible and get to know people on a personal level,” said McKee.

Yet the young people sharing their stories in the book are also adamant the focus not be solely on doom and gloom, but also perseverance.

Connor Beaton, a 19-year-old living with autism, said he's faced a tough time learning and getting good grades, but wanted to tell his story about making the honour roll and finding employment after high school.

“One of the best things about putting ourselves out there is that it just shows we're not afraid to show what we went through in life and how much we've grown,” he said.

Conlan, left, and sister Alannis McKee. Alannis has dedicated her professional and personal life to giving space to the stories of youth with disabilities and she says it is all thanks to her brother Conlan. Despite not having the ability to communicate verbally, he is featured in the Voices for Youth book together with his twin brother Kyle. photo courtesy of Alannis McKee

Beaton, Clouston and Jacob Kudlak met through a club at St. Patrick High School called Best Buddies, and all went on to attend a transitional employment program at Olds College in Olds, Alta.

Kudlak, who has cerebral palsy, went first in 2015, and is now aiming for a career in IT management.

“If you live with a disability, don't let it slow you down,” he said. “Never give up on what you want to do.”

Beaton said his dream is to one day have a family. Clouston said she wants to work in office management.

For now, the three want this book to be widely read and to start a real conversation among those who know a lot and those who may know very little about youth with disabilities.

“The thing I want them to walk away with is the fact that yeah we are disabled but we still have a voice,” Beaton said. “And we're like everybody else.”