By Allison Flynn
Tara Flanagan, Assistant Professor in the Dept. of Educational and Counselling Psychology, and her team focus on easing the transition from high school into the “real world” for people with developmental disabilities. With a PhD in social cognition and autism under her belt, she came to McGill in 2008. What led her down this road, however, began when she was an undergrad one icy morning in Winnipeg….
Tell me about your research.
I direct a research group called SPARC, which stands for Social Policy, Advocacy, Research & Community. A lot of the work I do is around self-determination and trying to promote social inclusion among people with developmental disabilities (like autism and Down’s Syndrome) – one of the most disadvantaged groups, in a lot of ways, because of stigma and low expectations.
What led you down this path?
I got my start in Winnipeg. I was doing an undergrad in psychology and was working at a gas station, pumping gas in -40°C weather. Around the corner from the station was a group home for adults with developmental disabilities. They would come by every morning on their way to work to get a coffee for the bus ride. Over time we developed a friendship. Eventually, I got up the courage to ask if they needed staff in the home and it turned out they needed to fill a spot. So, I obsessed over how I could make this happen because I had one thing on my c.v. and that was: gas-station attendant. When I went to the home for my interview, I got six hugs when I got to the front door [from the six residents]. I did actually have an interview, but it was a token one.
That job really shaped a lot of what I do now. I’m also really glad that I started off working with adults. Everyone there was in their mid-40s, but they were still working on self-development and lifelong learning. For example, I worked with a woman with autism who wanted to have better phone skills so she could call her family, but she also wanted to learn how to line dance, so, we did both together. If I had begun working with children, I wouldn’t have the same view that I have now.
The hardest part of that job was leaving it. I couldn’t have asked for a better start.
What are some of the things you’re working on now?
I do a lot of “action-research” kinds of projects. I have two currently running on the South Shore. One is for a group of [impoverished] at-risk youth that focuses on self-determination, empowerment, providing choices, getting students to know their strengths … The eventual goal is to get them to stay in school. The other is for young adults with developmental disabilities. It’s a post-secondary inclusive program called “Friendship and Community Ties.”
One of the biggest barriers is addressing the need for transition and for preparing for it. We have a lot of research on young children with developmental disabilities, early intervention programs in the school system and all these kinds of things. But we rarely prepare these kids to leave school. There’s social isolation, very few job opportunities and so they’re left with overall poor outcomes and quality of life.
How is this fixed?
We need to start much earlier with an eye toward the future. The opportunities [right now] are pretty minimal. It’s important to be working in conjunction with employers after high school.
Then we need to directly address the stigma, particularly around autism, because there’s a lot of info out there that’s misleading.
Quality of life is also an area that is under-researched. There are only two published articles on quality of life among people with autism in the world. To put it in context, there are more articles on the quality of life of their helper dogs than there are on people with autism.
Have these individuals gone through high school in the regular stream?
Some have. One of the things that my research group is involved with is a small support group for individuals on the autism spectrum here at the University. That’s just getting started.
Certainly at higher education institutions, people are starting to recognize this as an emerging population and they’re starting to prepare for it. More and more, you’re going to see individuals on the autism spectrum coming in from the regular school system to universities and colleges.
This emerging population is only being recognized now?
There are much better tools to access the nuances of behaviour and communication. So, you’re seeing more individuals on the spectrum than before. In the past, maybe they would have been considered in another category or just missed altogether. But then, there’s also the acceptance and promotion of an inclusive model of education so people are definitely going through the regular system more.
Does your work influence policy?
We have initial funding from the Max Bell Foundation, my colleague Dr. Aparna Nadig and I, to launch a program that may hopefully then translate into policy. And two weeks ago I became the Chair of McGill’s Joint Board-Senate Sub-Committee on People with Disabilities. I’ll be in this role until 2014. In this setting, the mandate is to influence policy at the University level around disability.
What about field work?
Also in line with self-determination and empowerment, I went to Chile this past summer to set up disability services at the University of Bío-Bío. I worked on an advocacy program for students with disabilities at the University. There were 12 students. I worked with their professors on universal design and on reducing stigma so that they could access the needs of all their students regardless of ability. It was a great success and it challenged me in a lot of ways.
And community building?
It’s part of SPARC’s name. I think it’s really important to create community and also bring disparate communities together. I’ve worked with McGill’s Institute for Health and Social Policy and co-hosted the International Day for People with Disabilities – a big gala that brought together the disability community, researchers, practitioners and the general public. I think this is a step toward reducing stigma and promoting inclusion. Groups that rarely talk to each other are in the same room. It was a celebration of the strengths of the disability community – so we had artists and speakers and musicians who had significant disabilities. There was nothing about intervention or remediation of any kind. It was simply a celebration and it was a huge success.
Your lab has new digs?
Yes, my team, Dr. Jacob Burack’s, (who was my PhD supervisor) and Dr. Steven Shaw’s teams share a new space called the McGill Developmental Research Group (MDRG). The interesting thing is that we are all so different but we share common values on developmental research. Collectively, our work covers the entire lifespan. Dr. Shaw looks at younger children and his research involves more of the physical components and genetic issues. Dr. Burack looks at attentional research, mostly with adolescents. I tend to focus mostly on adolescents and adulthood. Bringing the three of us together is a good idea to get a broad spectrum of research out with a common core.
And if that bus hadn’t come by the gas station for coffee?
I can’t imagine. Maybe I’d still be at the gas station.