Wednesday, May 6, 2015

How the tyranny of 'normal' hinders rehab

By Louise Kinross

In 2012, 25 scientists from six countries came to the University of Toronto to talk about new ways of looking at rehabilitation for children and adults. The result is
Rethinking Rehabilitation: Theory and Practice, a book co-edited by Holland Bloorview scientist Barbara Gibson.

BLOOM: Why is there a need for this book?

Barbara Gibson: Much of what we do in rehab is about helping people to thrive in their lives—sometimes as they are. But because what we do comes from a medical tradition, there’s an assumption that disability is a 'problem' that needs to be solved. Much of what we're doing in research is still trying to 'fix' impairments. This assumption structures what we do and how it’s funded. Even though we talk about how we’re interested in quality of life, participation and inclusion, rehab is mostly thought of as a branch of medicine and funded largely by government ministries of health. The message we unintentionally send in rehab is that the child or adult needs to change, and maybe that’s not always the right message. We'd like to help people to thrive or flourish or live well—something that’s central to the goals of rehab programs—by expanding our thinking beyond the underpinning of medicalization.

BLOOM: What would be a medical assumption underlying rehab?

Barbara Gibson: In one of the chapters, the author, who has spina bifida, talks about needing a hip replacement for hip pain. Over and over again, she had to fill out questionnaires that asked how difficult it was for her to carry groceries or to climb the stairs without a railing. These are standardized assessments we use all the time in rehab that assess physical function. She used a wheelchair and she said 'None of these questions apply to my life, why am I filling these out?' And the assumption is that your quality of life is lower if you have trouble walking up stairs, or if you use a cane. We're not trying to get rid of the medical, but to be reflective about how we use it.

BLOOM: It must be demoralizing to be constantly compared against a norm that doesn't make any sense for you.

Barbara Gibson: 'Normal development' is an underlying principle that's ingrained in children's rehab. The way we provide therapy is to help children approximate the normal developmental trajectory as much as possible. Having said that, we know most of the kids we work with won't be able to do that. We know from the beginning that they won’t achieve ‘normal’ functioning and yet we test them against these parameters all the time and send them to therapy and say your goal is to do 'X.' In the end the child and parents know that they didn’t reach these goals, that they ‘failed’ according to the tests. By comparing children to those normal milestones we set up children to not be successful and to internalize those ideas. And parents, too. What parent doesn't look to see if their child is following the milestones and not feel disappointed if they're not?

BLOOM: What would be a different way of looking at rehab?

Barbara Gibson: The last chapter is about how we teach people with new spinal cord injuries to use wheelchairs. It explains that this is more than learning a skill—it’s adopting a new way of understanding their body, and by extension, themselves. The authors ask you to imagine if you were in an accident and you emerged as a different gender, or a different race. What kind of therapy would you need to learn to become a new kind of person, while still having elements of the old person?

BLOOM: I read that chapter and it was interesting because they likened learning how to use a wheelchair to making it a part of your body. So the wheelchair is more than something mechanical?

Barbara Gibson: Wheelchair users tell us ‘it’s just part of me. I can’t imagine myself without it.’ And often they don’t like it when someone touches their chair because it feels like they’re touching their body. It's a different way of doing things and ‘being.’ It's about how you incorporate the wheelchair into how you feel about yourself. Someone with a congenital impairment has the same process. They grow up figuring out who they are, how they think about themselves, and the rehab intervention they get shapes that. We need to do a better job of helping people have a positive sense of who they are in the world.

BLOOM: I think our overfocus on independence often works against that.

Barbara Gibson: A new way of looking at things is the notion of assemblages, which I write about elsewhere. Instead of talking about independence we talk about 'what are the dependencies that can help people live well?’ We talk about a conglomeration of elements—the person, the wheelchair, their speech generating device, their mom, a house that's designed for them. So we look at whether this assemblage of elements enables practices or disables them. We don't analyze whether the person is independent, but whether their dependencies are enabling. The idea is basically that it's completely okay to use whatever you need to use.

BLOOM: How is the book structured?

Barbara Gibson: There are three sections. The first sets the stage with where we are right now in rehab and where we came from. One of the chapters is about the history of rehab, starting at World War II. The second part is about how we apply these ideas in relation to particular populations or topics, like identity. For example, one of the chapters is about whether the setting you're in makes a difference to recovery.

BLOOM: What kind of things would be different in settings?

Barbara Gibson: We talk about therapeutic landscapes and the messaging in the environment. For example, is it a place for 'sick people' or does it enable you to think about what's new in your life and to think about your identity in new and different ways? Does it repress emotion? Sometimes patients are made to feel that they can only express positive emotions with professionals. You know, 'we're all cheerleaders here.'

BLOOM: There is sometimes that pressure to remain positive no matter how you're really feeling and that's exhausting.

Barbara Gibson: Setting is not just about the physical, but also how the environment is structured and how scheduling works. The last section of the book is about if we take this seriously, what would we do? If we rethink rehab, what might it look like?

Rethinking Rehabilitation can be borrowed from the Holland Bloorview library. It’s targeted to researchers, clinicians and students, but will also be of interest to families. The Canadian Institutes of Health Research and the Health Research Council of New Zealand funded the event at the University of Toronto that brought the 25 researchers together.


Thanks Louise and Barbara, for this conversation. It has huge ramifications for the medical community as well as the consumer.

You probably bring this up in the book, which I haven't read, that funding for therapies is often discontinued for children that don't "make progress." But for children with progressively debilitating disorders, maintaining a certain level of function is tremendous "progress" in light of the potential for deterioration. The energy that goes into fighting the funding cuts could certainly be better spent elsewhere.

Thanks again for sharing a thought-provoking interview.