“This is my life now.”
That’s how Luciano Contini describes his role as parent and advocate for his six-year-old son, Peter.
The self-employed Human Resources Consultant and Vice President of Community Living Ontario says his son’s birth has brought many joys and challenges to the family, which includes eight-year-old son, John, and wife, Julie.
Luciano became involved with Community Living Ontario as a prior presenter on advocacy at the Confederation’s Conference and AGM; he recently completed his first full year on the Board. He says the organization’s mandate “matches my vision of inclusion for my son.”
“I want him to live the life that he wants to live and not have his life or his environment dictated to him; not having him forced into a template because he is challenged. Inclusion is all about having him in the community as a participating member of society, living the life the way he wants to live it,” he adds.
The Continis know travelling the path toward full inclusion is a lifelong and often frustrating process, but they are undaunted.
For example, finding a fully-inclusive school environment for Peter in the public or Catholic school systems in their hometown of Sudbury was not possible. The public system wasn’t ready for him, says Luciano, and the Catholic board said Peter could attend a regular class, but any time he would require personal care, Luciano or Julie would have to leave work and assist him themselves.
“That flies in the face of respect, dignity, human rights and the rights of the individual. He’s entitled to be in a class with his peers.”
He knows their choice to enrol Peter in a Montessori school, which they believe is built on inclusion, is not an option for many parents, but there’s a stark difference between the traditional school boards in Sudbury and Montessori.
At his son’s school, “I call myself Peter’s dad, because when kids see Peter they don’t see a kid with Down syndrome; whereas in the public system they see a kid that looks different and possibly expectations are that they should be segregated because the kids who look different are segregated in schools. [The children at Montessori] don’t see Peter at all that way. This is human nature. Peter is a friend. They replicate the behaviour being modelled by the educators – compassion, patience, and they redirect Peter correctly because they have learned to do so correctly.”
Still, the Continis haven’t given up on the public school system.
“We’re not there yet, but that is kind of in the plan. We’ve put them on notice that Peter is coming. None of them said they are prepared for Peter. None of them said ‘we are ready to go with Peter today.’ But they know that we are going to see them again and that Peter is on his way in. They have time to prepare.”
Luciano says other parents who are trying to have their child accommodated in a regular classroom have told them that the public school board knows “‘about you guys and they know you are coming.’ If they didn’t have a good feeling about us, I’m not sure they would have said that. I think they know we are advocating and to expect Peter because he belongs in a class with his peers.”
Peter’s parents say he is enjoying the life they want for him, because of the environment he is in right now.
“I’m not sure that in a segregated school system how many children with special needs can say they get up to 20 kids to a birthday party, because he is included and he has that many friends, and that’s what we want to see.”
Luciano and Julie are actively engaged with Community Living Ontario because they know how the organization is advocating for Peter and people with an intellectual disability across Ontario.
“Younger families like ours should get involved because it’s just as important to guarantee inclusion for adults as it is for children. For me, it is critical for the sustainability of inclusion to start with children.”
The attitudes of many today toward people with an intellectual disability are still negative, he acknowledges.
“Instead of seeing what people are capable of, we slide into caretaker mode and say ‘they can’t take care of themselves’ and ‘they are a burden on society’ and ‘let’s just make sure they are safe and that’s good enough.’ I think a lot of Community Living associations will say ‘we are great at keeping people safe and fed’ but we need to do more. We need to help these people live the lives they want to live, the good life.”
But the couple says this is a path they are walking, not just for their son, but for other families and that young families “need to understand that working for full inclusion is a lifelong process.”
Advocating for full inclusion is one of the battles that Community Living Ontario needs to continue, they say. As Luciano notes, “That’s an area where Community Living Ontario should be more than happy to work itself out of a job. Get society to a point where we don’t need to convince people of inclusion anymore because it is obvious.”
Julie, who works in human resources, labour relations and recruitment at Health Sciences North in their city, is a member of Community Living and President of the Down Syndrome Association of Sudbury.
“As a member, I like to hear about what’s happening now and what’s going to happen in the future,” she says.
“The wealth of information you can get through Community Living – you can’t get that anywhere else. It is knowledge; it helps you in whatever barriers you are trying to overcome now regardless of how old Peter is. It is helping in preparation for his future, and knowledge is helpful. It is nice to know it is there. It is nice to know the services. It is nice to know what fight they are fighting, and what battle they are going after. And it is great to know all the successes that have been happening for decades.”
– Viv Snead, Community Living Ontario
A Message from the President
A vital donation to Community Living Ontario 2015 Holiday Appeal will help Community Living Ontario provide enhanced programming and greater advocacy to ensure people with an intellectual disability and their families have a true sense of belonging, equality and acceptance in their communities.
There a more than 12,000 people with an intellectual disability and their families who rely on the generosity of supporters like you. With your help, we will continue to draw attention to the needs of thousands of families across Ontario.
As Luciano says, “It’s time to focus on what’s right and to include. We’re not there yet but if we don’t have that as our goal, we are never going to improve.”
We thank you for your continued support and commitment to advocate, promote and facilitate the full participation, inclusion and citizenship of people with an intellectual disability – and that includes boys like Peter.