It’s been a very long road, but the focus is now ‘functioning’ rather than ‘fixing’. Nowadays, we promote the idea of the best life possible being the best medicine for people with cerebral palsy.
Who is Dr Peter Rosenbaum?
Dr Peter Rosenbaum is a developmental pediatrician. Simply, this means he’s interested in the way impairments and chronic health conditions impact the development of children and their families.
He’s been in this field a long time now, and has both witnessed and influenced substantial changes in how children with cerebral palsy and other disabilities are treated.
But this story began when a much younger Peter Rosenbaum followed his soon-to-be wife from Canada to England. It was London-town that introduced him to developmental pediatrics, which – at the time – was a relatively untapped field of clinical work or science.
He graduated from a world class program in this field, and returned to Canada where he was recruited as a clinician and teacher by the Department of Pediatrics, Faculty of Health Sciences, at McMaster University in Ontario .
It was 1973
“Two things happened there (at McMaster). One was that after the first three or four years of my work, I started listening to what I was saying to parents, and what I was teaching, and realized that I wasn’t actually sure about the things I was saying!” Dr Rosenbaum reflects.
“I wasn’t trying to pull the wool over anybody’s eyes, but I was less convinced that what I had been taught actually made sense.
“The second part of this story is that I was in a place where it was OK to ask questions and to be academically and intellectually challenging. So, I began to think about what it was we were doing and whether we could study some of it.”
From here, Dr Rosenbaum went on to look at a wide variety of aspects of childhood disability. He met and worked with a group of highly intelligent and extremely talented professionals in the field.
Founded in 1989, CanChild grew out of the relationships he made along the way.
CanChild is housed within the School of Rehabilitation Science at McMaster University and is the hub in an academic network of international scientists that conduct applied clinical and health services research about children and youth with a variety of developmental conditions.
So, what has changed in how we treat children with cerebral palsy?
“In the past, and certainly in the late twentieth century, not only were you getting lots of therapy, but we wanted you to learn to walk and talk nicely and ‘normally’,” says Dr Rosenbaum.
“Normal is a dumb idea,” the usually light-hearted but now very serious Dr Rosenbaum declares.
He says that the tradition and culture of medicine, and in fact all parts of healthcare in the Western world during the twentieth century, was bio-medicine.
Biomedicine suggests that healthcare professionals will do all the right tests, make the right diagnosis and find the right treatment. And if they can’t, then they haven’t done something right along the way.
“When I lecture on this, I always say something along the following lines:” says Dr Rosenbaum.
“I’m standing here talking to you and suddenly I have chest pain. I would like you to get me to the nearest casualty room as quickly as possible where people will check my blood pressure, do an E.C.G and a few other tests to very quickly figure out whether my chest pain – which came on suddenly – is cardiac, or related to my digestive system, or to anxiety, or to a broken rib.
“And it’s going to matter very much what the diagnosis is, because for each of those four possibilities, there are very specific – and in some cases life-saving – treatments.”
Dr Rosenbaum uses this example to demonstrate that there is a very real, and very important, connection between diagnosis and treatment.
However, his point is that healthcare professionals have imported this framework into childhood disability, and many other areas of chronic care, where the details of diagnosis have some importance but don’t tell you what to do.
“The diagnosis is important because it tells you that you’re not a hypochondriac, but on the other hand it doesn’t tell you what you have to do,” he says.
“So much of the twentieth century approach was focused on having made the diagnosis and following it up with lots of treatment.
“For people living with cerebral palsy, this meant subjecting them to various kinds of therapies, based on the assumption that if we could fix or improve what was wrong with the body, then people could pick up their bed and walk.”
While in his judgment this was misguided, Dr Rosenbaum says that this approach came from a place of good intentions.
“We had the assumption that we needed to provide lots of treatment, and if the kids weren’t functioning better, it was obviously because either the treatment didn’t work or because we weren’t doing enough of it,” he says.
In the late 1990s, the World Health Organization came up with the current international classification framework for health – the International Classification of Functioning, Disability and Health (ICF), published in 2001.
“This new framework starts off thinking about any health condition (diabetes, cerebral palsy, autism, Alzheimer’s, vision impairment) in terms of manifestations in ‘body structure and function’,” says Dr Rosenbaum.
Having labelled the condition, the process begins to identify what people can do (‘activity’ or ‘-ing’ words) and how they engage in life (‘participation’) in the context of personal and environmental factors that influence activity and participation.
Dr Rosenbaum and his colleagues would go on to simplify these ideas further in a paper on the ‘F-words’ associated with the conceptualization of childhood disability.
The original ‘F-word’ was ‘fix’
“We now have the opportunity to see our classic intervention strategies and therapies in a different light,” he says. “We don’t fix most chronic conditions: we don’t fix diabetes; people who wear glasses haven’t had their eyes fixed, but they’ve had their function improved.”
Here is where the penny drops that the shift to focusing on ‘function’ really has happened.
“We now think about functioning in the context of what you as a child or an adult want to do. How can medical, and therapy, and environmental, and other services support you to do what you want to do, to be what you want to be?” asks Dr Rosenbaum.
“Basically, we’ve got to say it’s not just you kiddo, it’s your environment. And it’s all this other stuff around you.”
Talking about an Armenian family he met at a workshop in India a few years back, Dr Rosenbaum tells the following story:
“The family had a six-year old with spinal muscular atrophy. Now that’s a condition where kids are weak and have limited ability to move independently. We quickly established that the child’s weakness was one we just don’t know how to fix.
“So, I asked the mother if her child went to school. She told me no. I asked her if her child had a wheelchair. She told me no. I simply suggested she get him a wheelchair so he could go to school. The family liked this idea very much! This simple ‘environmental’ intervention had never been considered!” says Dr Rosenbaum.
What do we still need to do?
From here, Dr Rosenbaum tells us it’s all about education and awareness. But we also have to think about things from a life-course perspective.
He is very clear when he says he thinks we need to change how we think, talk and act about childhood disability and childhood difference.
The language around childhood disability has already changed to a great degree and, thankfully, is continuing to change. “We used to talk about you having a handicap. Then we talked about you having a disability,” he says.
“And now we talk about you having a difference, or an impairment – something that isn’t quite right and which cannot be completely rectified but hopefully can be accommodated to allow you to do what’s important to you. That’s what glasses or a hearing aid accomplish!”
“You’d like to go get a job but you’re in a wheelchair and the boss says: we don’t hire people in wheelchairs. Well you know you’re ready and capable of doing the job, and now you have an environmental factor, in this case a human factor, an attitudinal factor, which is interfering with your ability to do things.”
“That is seeing the potential mismatch between a person’s interests, and capabilities, and the environments with the so-called affordances – if the environment is accessible we can do it,” says Dr Rosenbaum.
“So, there’s all that kind of work that still needs to be done to help people realize that people like us are what some people refer to as the ‘temporarily able-bodied’,” he says.
“You know, another of those things I cringe at now, was for years and years when parents asked about how to parent their child with an impairment, I would tell them to just do with their children what they’d done with their older ones.
“It was well-intentioned but in fact hollow advice, because we don’t recognize how much the child brings to the dance (of parenting) until we’re stepping on their toes and realizing that they don’t dance very well.
“We need to help parents understand those kinds of things. You don’t have to expect things to be done nicely and normally and typically. You can reinforce the effort and the success (of the children) even if it is done differently,” says Dr Rosenbaum.
“We have to start looking at more of what is similar, rather than what is different. We have to start to expect more of kids.”
“We have to relate what we’re talking about to regular life, when we’re proposing what we’re advocating for children with a disability. Relate it to wearing glasses, wearing a brace, using a cane, using a wheelchair.
“And we need to stop using language like ‘confined to a wheelchair’. You’re only confined when your wheelchair’s broken.”
- Read more about Dr Rosenbaum’s work on the CanChild website.
- World CP Day has collaborated with Dr Rosenbaum, CanChild and its F-Words research group (including some very active parents) to create a set of popular Cerebral Palsy: My F(avourite) Words posters, in multiple languages. They are free to download and use.
- More resources can be found on CanChild’s F-Words Knowledge Hub.
- Full text of the original F-Words article by Peter Rosenbaum and Jan Willem Gorter is free to download: The F-Words in childhood disability: I swear this is how we should think’