A Western professor’s research findings indicate some very serious flaws in rehabilitation models for children with disabilities, and why they need to be corrected.
Gail Teachman, professor of occupational therapy, says it’s still true today that most of the focus in children’s rehabilitation tends to be on addressing impairment and helping kids with disabilities be as ‘normal’ as possible.
Her research shows, though well-intentioned, rehabilitation in this form can actually be detrimental to a child with disabilities.
“This is one of the key findings in most of my projects. Some ways of practising can actually be quite harmful for children, especially as they become older and begin to see the social stigma and difficulties faced by individuals who are different,” Teachman said.
Societally, the research shows, disability is often seen as tragic, or the source of burden for others.
Teachman’s work takes an entirely different view.
“What would happen if we changed some of these values so there’s more room for somebody to be different – not the ‘perfect, ideal citizen’ our neoliberal society puts up as the one ‘right’ way to be?” asked Teachman.
“Wouldn’t it be better if we thought of ways to address impairment, but at the same time be a force, socially, to reduce stigma and promote what we call positive disability identities?”
A recent study conducted by Teachman and her team involved learning directly from individuals about their experiences in children’s rehab. The participants included children living with cerebral palsy and blindness, as well as individuals with an acquired brain injury.
“They told us some of the things that happened to them, despite the fact they were almost always well-intended, made them feel like they were just a project to be worked on, or that they felt disembodied, like they were up on the ceiling watching the things other people did to them,” she said.
In other words, they weren’t an integral part of the experience, and weren’t able to share with health-care professionals their thoughts, feelings and preferences. They weren’t given agency in the process, and were largely left out of the discussion about their own health care and their own bodies. The same is experienced beyond the health-care setting – in schooling, employment and beyond. Teachman believes the reasons are two-fold.
“Children in our society haven’t really been talked to directly. They’ve been felt to be incompetent and unable to share anything valuable about their own experiences.” – Gail Teachman, professor of occupational therapy
“And then there are a lot of assumptions that ‘the professionals know best,’” which leads to parents, who want the best for their children, feeling pressure to honour the ‘experts’.
Teachman challenges these assumptions and pressures and has been doing so – both clinically and in a research context – for more than three decades. Before she joined Western’s Faculty of Health Sciences in 2018, she’d spent 24 years as an occupational therapist at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
Through her research, Teachman promotes “social inclusion and equity for children and youth with disabilities” – in all areas of life. The name of her lab, Childhood Rehabilitation Ethics and Disability (CRED) encapsulates her program of research.
“My work is really focused on getting at those assumptions and challenging us all to try and think a bit differently,” said Teachman. “It’s not about throwing out all the good things, but rather focusing on how we might make some shifts that could honour a more positive disability identity – and the knowledge we have from disability scholars.”
The term ‘disability’ itself is one to be challenged. Is an individual who is blind disabled? Or is their blindness an impairment? What is the proper term – an autistic person or a person with autism? Sometimes, person-first language is preferred. Sometimes, it’s not.
Teachman says that an individual’s impairment is just that – an impairment, and not a disability. Disability, rather, is the “experience or phenomena that gets produced out in the social world.” Some groups, including many disability activists, prefer to use terms such as ‘disabled child’ or ‘disabled person’ to signal that disability is produced at the level of society and is not a ‘deficit’ located within individuals.
“In the deaf community, for example, people have pushed back to say, ‘No, this isn’t a difference that needs fixing. We’re fine the way we are. We can develop our own deaf culture,’” said Teachman.
“But these are ongoing debates. I’m not suggesting there’s one right answer, and I think that’s another clear message in my research. Some people prefer to say, ‘I’m a disabled person.’ With autism, some people like to say, ‘I’m autistic. It’s part of my identity. It’s who I am, I don’t want to change it.’”
Teachman says the key takeaway is about asking what the individual wants – not just around terminology, but about everything involving inclusion and equity.
“We can learn more from people who get labelled and who experience disability, and we need to be much more tuned in to their views and preferences.”