How Western ideas about success fail disabled youth
By Louise Kinross
Much has been written about how using normal development as a rehab benchmark sets disabled kids up to fail and devalues different ways of being in the world.
Now a new study looks at how Western ideas that equate adulthood with independence, work and education marginalize young adults with developmental disabilities—and their parents.
“When transition policies and practices for disabled youth are shaped on achieving this ‘normal’ adulthood, how does that disadvantage youth who aren’t able to participate in valued ways?” asks Yani Hamdani, an occupational therapist who won first prize in the 2017 Bloorview Research Institute Pursuit Awards for her PhD research.
Yani analyzed three Ontario policies aimed at moving youth with disabilities into adulthood, and interviewed the parents of 13 young adults with disabilities like autism, cerebral palsy and Down syndrome. All of the young adults had an intellectual disability and some also had physical disabilities.
One of the most interesting findings of her research is that parents neglect their own lives and health to coordinate meaningful things for their adult children to do.
“We put this expectation on parents to raise this ‘ideal’ adult, but we don’t have anything in the policies to address what happens if the young person doesn’t get there,” Yani says. “These parents are so busy trying to create community life for their children that they don’t spend time with their friends, they don’t do things for fun, and they can’t retire when they want to, because they have to pay for programs and supports. Services are so incomplete that when children leave school the family has to run a five-day program to replace it.”
Yani says she became interested in her research because she used to develop transition programs for youth at Holland Bloorview. “We were starting to do a really good job of transferring clients to adult health care, but many parents I’d collaborated with later talked about the significant challenges they faced in creating a life for their child when they left high school” and services dried up.
Yani’s study used a critical policy analysis approach to “identify and unpack taken-for-granted ideas about disability and what constitutes a ‘proper’ adulthood, and how these shape policies and practices.”
What she found in Ontario policies and interviews with parents were implicit assumptions about a normal adulthood that position disabled teens as problems in need of intervention, Yani says.
The transition policies—one from the world of rehab, one from education and one from developmental services—“place emphasis on normal ways of being, becoming and acting like an adult,” Yani says. For example, the education one “focused on the idea that almost all students will transition to work, further education or community living.”
These policies are well-intended and help some disabled youth set and reach goals for moving out on their own, going to university or working, Yani says.
But they exclude and marginalize those who can’t. “What is the experience of hearing that you need to be fixed for your whole life?” Yani asks. “How do you internalize that, in terms of who you are in society and what people think about you? While these policies aim to help, they perpetuate ideas about who is valued and who is not.”
One policy attempts to convey diverse ways of living as an adult, but refers to the goal of active citizenship. “What does active citizenship actually look like if a person is not physically or intellectually able to participate?” Yani says. “Is being inactive or passive less valued, and to be prevented?”
For young people who don’t develop typically, we need to think beyond the transition to adult services to health and wellbeing over a lifetime, Yani says. “We need policies and interventions that promote health and diverse ways of living a good life, and that recognize that the Western ideal of adulthood isn't possible or desired by everyone.”
In thinking back to her time working with families on transition Yani says, “I needed more education and training on what a good life could look like if a person wasn’t going to go to work or college. And I needed to be able to talk about these possibilities in a way that didn’t imply they were less valuable than traditional paths.”
Yani says clinicians need to start talking with families about unconventional futures for their children. “We need to talk to families about a variety of ways of living well, and what they might look like.”
Yani says her findings need to be shared with policy makers and to be part of the dialogue at the beginning of research on transition.
Instead of looking at disability as a problem that needs to be fixed, Yani says we need to embrace diverse ways of living, and view disability as a kind of difference, like we do race, gender or sexual orientation. “We need to free people from social ways of thinking that, left unquestioned, marginalize or disadvantage them.”
Yani was surprised that despite the extraordinary efforts of parents in her study to support their adult children, they didn’t describe this unpaid work as onerous. “There’s a social pressure for these parents to create these lives for their children and to take on the stress, almost without complaint. Our policies are silent on the mental health and social consequences of that for parents.”
Yani notes that some parents did use the word “burden” when describing their fears about care for their disabled child falling to a sibling. “It’s not proper for a parent to say that they feel burdened with this situation, but they do talk about not wanting to burden another child. I found that really, really interesting.”
For youth with developmental disabilities, Yani says we need funding and services that focus on family wellbeing over the lifespan. “Not all parents and youth want the same things, so there isn’t one answer. That’s why we need very flexible policies and supports.”
Yani Hamdani (below left with scientist Amy McPherson) completed her PhD in Social and Behavioural Health Sciences in 2016 at the Dalla Lana School of Public Health at the University of Toronto.
