Decades of advocacy fosters greater understanding and inclusion
If actions speak louder than words, then Nina Pickburn’s love for her son is deafening.A trailblazer in the family movement in British Columbia, Nina has tirelessly advocated for her only child for most of his 44 years – and in doing so, fostered greater awareness, understanding and inclusion for people who have disabilities.
“They’re people who are a little different but they’re human beings,” Nina says, adding they have as much right to be part of the community as everyone else.
Admittedly there were times when the challenges to help her son seemed daunting and overwhelming, Nina says, but she always accepted her beloved Manuel, who has autism, epilepsy and mild Tourette syndrome, and strived to provide for him.
“I believe I was chosen to be his mother because I was going to do a good job of it,” Nina says.
Her wishes for Manuel, who was supported by posAbilities for 21 years, have centred on his safety and happiness. But Nina also wanted him to attend school and have other opportunities.
“The motivation all along was to see how to help him and prepare him the best I could to be able to function,” Nina says.
It was a great challenge 40 years ago when little was known about autism and few programs or services were available. Nina taught many things to her son herself.
At age three, the same year he was diagnosed with autism, Manuel became the youngest child supported at Laurel House, a provincial pilot project.
It was the first of many programs to help Manuel over the years.
It was also through Laurel House that Nina met other parents. They formed the Pacific Association for Autistic Citizens, which was the forerunner to the Autism Society of British Columbia.
Nina says the association networked with families as well as professionals from as far away as Europe and England.
“We just wanted to spread the word, as it were, and raise awareness of autism,” she says, noting there were likely many undiagnosed children at that time in need of help and support.
Education and awareness are key to change, says Nina, who notes the difference in support today and decades ago is “like night and day.”
“As you go along, you learn more and when you know better, you do better,” she says.
Other milestones were reached little by little, with his mother’s perseverance, as Manuel grew.
He attended a class in elementary school and later, was the first student who has special needs to have a personal assistant funded by the Vancouver School Board.
Nina was also instrumental in attaining religious education for her son so he could become a full-fledged member of his church. Today, VANSPEC (the Vancouver Special Catechetical Program) offers Catholic education instruction to children, teens and adults who have developmental disabilities, learning and intellectual challenges.
Currently, Nina is working for inclusive education in parochial schools so children who have disabilities can attend the same school as their siblings.
She’s also providing input to the Community Living Society’s Aging with Dignity project.
“We need to anticipate needs coming around the corner as people (who have disabilities) age,” Nina says, adding she believes they should be able to live at home, with support, for as long as possible.
Nina is also a director with the Jo Dickey Foundation. It provides small grants to enhance the quality of life of adults who have developmental disabilities which, Nina says, “is a joy to do.”
Asked what she would advise families today, Nina looks to the lessons of her past.
“You cannot wait for somebody else to do whatever it is that you want for your child. Don’t wait for it . . . you’ve got to do it yourself.
“And find support from other parents,” Nina says.
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