Sharing their experiences with others
Disability activist launches mentorship program to help people with cerebral palsy
Hannah MacLellan wants to help people with cerebral palsy and their families by starting a peer mentorship program.
“Growing up I was alone. I did not know many other kids with cerebral palsy,” said the 24-year-old, who is also the vice-president of the P.E.I. Cerebral Palsy Association. “I want to change that on P.E.I.”
Cerebral palsy affects MacLellan’s speech, balance and fine motor skills, but the biggest hurdle she faces is the lack of infrastructure and a discriminatory attitude from society.
She is passionate about this project because she did not have resources growing up, she said. Her goal is to be an advocate for the cerebral palsy community and help people to live a normal life, she added. About 400 people in P.E.I. have cerebral palsy.
MacLellan decided to start this program because she got a lot of inquiries, she said. Her objective is to create a community and bring people sdvice and guidance. The mentorship program involves people sharing their experience living with cerebral palsy or living with someone who has it and how to access the required resources, she said, adding the goal is social inclusion and community building.
“There was nothing like this when I was young. It would have been less lonely, if there was a community like this.”
MacLellan is currently in the first year of her master’s degree in social work at Carlton University in Ottawa. After finishing school, she plans to return to P.E.I. and work in the public service sector, regarding disability policies and social policies in general, she said, adding the mentorship program will launch this spring. So far, 10 people have already signed up, and she hopes more people will join.
“Although I experience physical obstacles, I believe that cerebral palsy has shaped my life for the better, by providing me with incredible opportunities, an advocacy platform and a professional direction,” said MacLellan.
SHARE EXPERIENCE
Colin MacPhail, a home builder, is a father to four, including his oldest son, Nick, who has cerebral palsy. MacPhail wants to help other parents and families in similar situations and share his experience and advice through the peer mentorship program.
Also a board member of the P.E.I. Cerebral Palsy Association, he has known MacLellan since she was a child and is glad to work with her on this project.
Nick needs complete physical care as he is in a wheelchair and is non-verbal. Colin and his wife, Helen, have taken care of him throughout his life, he said.
“There is no guidance available, so you have to rely on people around you and be an aggressive advocate for your child to get care,” said MacPhail, who added the nearest access to rehab centres is in Fredericton or Halifax.
He would like to see rehab facilities, physiotherapy clinics and fundings for equipment here in P.E.I. There should be infrastructure to also help the parents, he said.
In addition, he said some people, even health-care professionals, don't know how to approach individuals with cerebral palsy,
He wishes he had some form of guidance or a peer mentorship program while raising his son.
“It is very stressful. You suffer from, anxiety, depression. The government should hire professionals to guide them,” he added.
Having a child with a disability changed his attitude and outlook on life and made him a better person, he said.
“My advice to the other parents is, try to include your child in everything you do, try to get out, socialize, enjoy life, don’t let them be alone,” he said.
“Their milestones are different, but don’t treat them differently. It’s not the end of the world.”