What are the ‘F-words’ of childhood disability?

TVO.org speaks with two doctors about how changing the way medical professionals talk can improve the lives of children with physical and neurological disabilities
By Daniel Kitts - Published on Feb 18, 2020
The Ontario Brain Institute will host a public talk on the “F-words” of childhood disability in Hamilton on February 19, at 6:30 p.m. (CanChild)

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Medical researchers have become increasingly aware of the fact that coming up with the best possible treatments doesn’t just involve cutting-edge work in a lab. It can sometimes involve changing the way they think about those they’re trying to help.

That insight was the inspiration for “F-Words in Childhood Disability,” a 2011 paper by Peter Rosenbaum of McMaster University and Jan Willem Gorter of McMaster Children’s Hospital. Rosenbaum and Gorter identify six words, all starting with the letter “F,” that they believe can help health professionals do a better job of improving the lives of kids with neurological and physical challenges.

Rosenbaum and Gorter will participate in a public talk about these “F-words” hosted by the Ontario Brain Institute in Hamilton on Wednesday, February 19, at 6:30 p.m. In advance of the event, TVO.org spoke to the two researchers about how they think changing perceptions can help children with disabilities. 

Let’s start with the most basic question: What are the F-words?

Jan Willem Gorter: Function, family, fitness, fun, friends, and future.

And what’s the purpose of those words?

Gorter: They are really to help people who work with children with disabilities and their families to understand the real-life issues. That is often forgotten when we get into more clinical ways of helping children and families.

Peter Rosenbaum: What we’re trying to do is to help people see that, in addition to the medical dimensions of a problem that interfere with a child’s behaviour, development, and functioning, there’s a whole other range of things that we should be thinking about.

Let’s talk about these words. What do you mean by “function?”

Rosenbaum: We’ve traditionally thought about children with disabilities as needing to function nicely and normally. “Normal” is a dumb idea. For example, there was a time when left-handed people were forced to change and use their right hand — an idea that is entirely stupid. And it speaks to the tyranny of a particular way of looking at the world. So we’re arguing and promoting the idea that if you can do what you need to do — like the three of us in this conversation being able to see with our glasses — that’s okay. And nobody’s going to get after your mother or my mother because they didn’t make us try harder to see well.

Another of the F-words is “family.” Isn’t family an obvious part of a child’s life?

Rosenbaum: We [as clinicians] have all been trained in child health. [But] we’ve both been at this for a long time, and neither of us has ever had a three-year-old come in on her own and say “Doc, you got to help me; my behaviour sucks. I don’t talk good. I’m not learning.” So our central relationship in child health is with families. And we’ve not paid nearly enough attention to that beyond lip service.

The next word is “fitness.” What do you mean by that?

Gorter: We know, in general, that children with chronic conditions and disabilities often have lower physical-activity levels because of the nature of their physical disability or other reasons, like pain. So we have often missed out addressing being physically active, as we all need to be physically active. There was a time not so long ago — 10, 20 years ago — that physical activity was considered bad [for children with certain disabilities]. Not only did we not promote it, but we considered it dangerous. That has been proven wrong.

Another F-word is “fun.” Why do you want to emphasize that?

Rosenbaum: If we want a child to pursue certain activities — intellectual, social, physical, or whatever — if we build it around what’s fun for them, then it isn’t work. An easy example would be a child who likes the water. If we have a child with cerebral palsy or Down’s syndrome who likes the water, we can build in a variety of activities that you or I might call therapy, but for the child is fun.

Another F-word raises something we typically take for granted as part of a child's life: "friends."

Rosenbaum: One of the sad aspects of having a disability is that it's often harder to have and to keep friends. But that's partly, at least, I think, because of lack of exposure. Because we haven't valued friendship as highly [in medicine], we don't necessarily think about ways to expose kids to other kids. Again, it's one of those things that is too easy to take for granted, but by identifying it in this way, we just bring it to people's attention. 

The last F-word is "future." Why is that so important? 

Gorter: We expect people with cerebral palsy, for example, to have almost an average life expectancy. The picture was very different 20 years ago, as it was for other chronic conditions. It’s still not well-known that these children have to be prepared for adult life, including perhaps living on their own, developing relationships, employment, and so forth.

Rosenbaum: The conditions in which we’re interested — cerebral palsy, Down’s syndrome, autism, and so on — all show up early in childhood. So they are the traditionally the focus of child-health professionals. But guess what? All these children grow up and become adults with the same conditions. We don’t cure them; they don’t die; they don’t go away. So we’re just beginning actively and systematically to look at the adult lives of people who used to be children with these conditions. It’s a whole direction that hasn’t been paid attention to, even though it’s always been there.

What do you hope audience members will get out of the public talk on Wednesday?

Gorter: We truly hope people will think in a strength-based approach — what a child can do versus what they cannot do. And people will work in meaningful ways with the child and the family to help them to live a life as they want it, not necessarily the way we think they should want it.

This interview has been condensed and edited for length and clarity.

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