A UBC expert says attitudes toward people with intellectual disabilities are improving but underlying discrimination exists
The Special Olympics Canada 2014 Summer Games take place at UBC’s Vancouver campus July 8-12. Ahead of the games, UBC Professor Tim Stainton, director of the Centre for Inclusion and Citizenship discusses the challenges facing people with intellectual disabilities and their families.
What are the biggest issues facing people with intellectual disabilities?
Transition is one of the biggest issues. Children with intellectual disabilities receive support and services until they turn 19 and then it drops off. There are long waiting lists for adult services and families say it’s like falling off a cliff. But the biggest impact is on the person with the intellectual disability. When school ends that person essentially disappears. They face huge problems with isolation, which can exacerbate other problems.
We need to address issues like post-secondary education and employment. The employment rate for people with intellectual disabilities is only 21 per cent. The Centre for Inclusion and Citizenship works on several employment projects. One involves creating an interactive map where people with intellectual disabilities can post videos or comments about their positive experiences and search for other posts from their region.
How have attitudes toward people with intellectual disabilities changed over time?
In the 1970s and ‘80s we saw rapid progress for people with intellectual disabilities. We began to recognize their rights and focused on inclusion instead of segregation. While we’ve made a lot of progress, an undercurrent of discrimination still exists.
Society tends to think of disability as suffering. Around 90 per cent of babies with Down syndrome are terminated during pregnancy but many parents of children with Down syndrome will tell you that their child is not suffering. This reflects a feeling of unease about disability and a tension between the movement toward inclusion and our underlying attitudes.
This is also reflected in the current debate on assisted suicide, which many people involved in the disability movement oppose. Reports often suggest there is no risk and no slippery slope but there certainly is a slippery slope when it comes to people with disabilties. The concern is that we’re not curing disability; we’re just getting rid of people with disability.
What are the experiences of families of children with disabilities?
One of the first studies I did in 1992 asked parents about the positive impacts of having a child with an intellectual disability. No one had asked that before and the responses just kept pouring out. One couple said that having a child with a disability made them the people they always wanted to be.
Families face many challenges but most are structural and they will all say that their child has had a profound impact on the family in a very positive way. People with intellectual disabilities help you appreciate the world in a different way. Parents tell you that their other children are more tolerant and compassionate.
What issues around people with intellectual disabilities need to be explored further?
I think it will be the recognition that disability does not dominate a person’s personality. People are very complex. We held a series of community workshops this year that focused on underrepresented populations. We held workshops about immigrants and refugees, LGBTQ people, and Aboriginal people with intellectual disabilities.
Some people in this field said it was the first time in 30 years they had talked about these things. No one knows, for example, how many Aboriginal people have intellectual disabilities or where they live. We learned that one of the biggest challenges for Aboriginal people is that they have to leave reserves to access services, which are provided by the provincial government. This can mean leaving their support system and important cultural parts of their life behind.
Tim Stainton is a professor in UBC’s School of Social Work and director of the Centre for Inclusion and Citizenship.