Friday, December 7, 2012

Let's rethink 'normal' in children's rehab

















By Barbara Gibson

Rehab professionals want to help improve the lives of children with disabilities. But they sometimes struggle with two conflicting visions of how to do that.

Is their role to "normalize" bodies that are impaired, or to promote acceptance of diverse bodies and abilities?

As a physiotherapist and child disability researcher, I know that “normal” is often taken for granted as a benchmark to assess quality of life. To rate life quality, we often measure the amount of help a person requires to carry out daily activities. Our questionnaires assume that the more you do on your own, the better life will be. So walking independently gets a higher score than walking with a cane. And walking with a cane rates higher than using a wheelchair.

By assessing physical abilities alone – and ignoring social influences on wellbeing like relationships, security and expectations – these measures reproduce cultural biases about what constitutes a good life and inadvertently reinforce exclusion. On these measures children with disabilities are marked as “other” and in need of intervention.

Of course cultural values about disability don’t originate in rehab. They reflect societal values.

Developmental psychology is largely responsible for the concept of the “normal child.” Bodies which can’t be fixed through surgery, therapy or medications fall outside the limits of normal development and bear the stigma of pathology.

New parents are a good barometer of mainstream ideas about disability. Many parents of infants with disabilities come to rehab with high hopes that surgery, drugs and intense physio will cure their child – or dramatically reduce differences – and the willingness to “do whatever it takes.”

Because of the value placed on normality, parents – particularly mothers – find themselves caught between pushing for intervention and defending their child’s worth. They are put in the paradoxical position of saying to their child “I love you as you are” and “I would do anything to change you.”

When parents have unrealistic expectations, rehab therapists struggle with how to support these families while not destroying their hope.

Walking is an example of a rehab goal that is a taken-for-granted good in children’s rehab. Intense walking training is built into the system in a way that largely precludes parent decision-making about whether or not to have treatment. In Canada, preschool children routinely receive intensive publicly funded standing and walking therapy two to three times per week. Use of walkers and powered wheelchairs may be discouraged until other options have been exhausted. Many parents seek out additional private therapies – often at great monetary and time costs.

The focus on walking (from formal therapy to home and community programs to conductive education camp) can fill up days – leaving children little time to just be kids.

Because their bodies have been identified as in need of fixing, children themselves come to understand that they fall outside an accepted norm. In our culture, in addition to conveying mobility, walking and “standing on your own two feet” symbolize a whole set of moral virtues – including dignity and autonomy. The drive to walk can create an overfocus on bodies and therapy.

And even with intense therapy, some children won’t ever become walkers or will use wheelchairs to get around some or all of the time. (As they age, we are better able to predict the walking abilities of children.)

Studies with self-reports from children show they are keenly aware of how others stigmatize them. Interestingly the same studies find children don’t necessarily internalize this stigma or identify themselves as disabled. This may suggest that children are less concerned with walking and more concerned with being able to get around.

A study of adult wheelchair-users revealed a distinction between the way they viewed their wheelchair positively as children, and the negative views their parents held of the wheelchair. Many stopped associating “not walking” with a medical condition. Wheeling became a normal mode of movement. This shift in attitude helped wheelchair users gain a positive identity and achieve life goals in spite of the stigma attached to wheelchair use.

In my own research with children with cerebral palsy, children were conflicted and ambivalent about the value of walking. When choosing whether to walk, crawl or wheel, they considered the amount of energy needed, the activity, the environment and their preferences. They resisted negative views of disability by expressing pride in the speed, colour or features of their devices and in identifying themselves as wheelchair users.

However, children over the age of 11 expressed that it was important to be identified among peers as “someone who can walk.” These findings help demonstrate how children are socialized to divide the world into walkers and non-walkers. They learn a dominant message, reinforced by years of rehabilitation, that non-walking and non-walkers are problems to be fixed.

Promoting acceptance of diversity and difference are given short shrift in rehab compared to the amount of time, energy and money spent on achieving, or moving closer to “normal:” normal bodies, normal behaviours, normal movement, normal activities.

There is positive change in the way the rehab world views intervention. The introduction of the World Health Organization’s International Classification of Functioning, Disability and Health puts the rehab focus on social participation rather than fixing bodies, and acknowledges that function results from many influences.

But the politics of disability are still largely absent in rehab talk.

This is where cross-pollination between rehab professionals and disability studies researchers is invaluable. Rehab researchers who are immersed in disability studies (like me!) are in a unique position to challenge rehab assumptions from within. We need to encourage our colleagues to think differently. And rehab professionals have a wealth of knowledge and experience to help children reach their full potential – knowledge that isn't always recognized or appreciated in the disability studies community.

Barbara Gibson is an associate professor in the Department of Physical Therapy at the University of Toronto, and a senior scientist in the Bloorview Research Institute.

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9 comments:

This is a great post. I never thought about it from a professional's point of view. As a parent - and this may sound odd - it makes me happy that they struggle with issues that are so similar to what we deal with on a regular basis.

Syona is young so our key indicator is really just her. That's not to say she loves all the hard work she does, but she has a very distinct way of telling us when she really is done and isn't enjoying the process anymore. At this point, my key driver is inspiring her to be HER best self (whatever that looks like) so I take my cues from her.

It will be interesting to see how this changes/is impacted as she gets older and she begins to identify with certain traits, abilities or groups.

Thank you for a thoughtful perspective. I have always thought that an emphasis on walking for so many people was strange. Getting from point A to point B, yes, obviously. But I would prefer to do that quickly, painlessly and whenever I felt like moving in space. Wouldn't most rational people (if they really thought about) prefer a power chair if walking was simply inefficient and unpleasant? Independence is overrated at best and a cruel fiction at its worst (for people with severe disabilities). As the writer indicates, often aspiring to independence at all costs simply leads to isolation.

Hi -- It's great to see all the comments here.

I wondered why we wouldn't create new benchmarks based on what could be expected with a certain type/degree of disability. So instead of comparing against "normal" why not have a different development chart (e.g. if my child has a certain type/degree of CP, we would expect their development to proceed in this way).

I'm thinking about the same thing with growth charts. Why do we use growth charts based on typical kids for children with genetic conditions and even dwarfism!

That's right, my son was diagnosed with "failure to thrive" as a toddler even though his body was in proportion and he wasn't skinny, and his condition is associated with short stature/dwarfism. Instead of assuming that this was natural for him given his condition, we were told to monitor and record everything that passed his lips, put him on a high fat diet of cream and butter, and generally become obsessed with his weight and growth -- to the point he was put on a g-tube and a trial of growth-hormone therapy (none of which worked!)

What is the point of charting a child with a rare genetic condition and dwarfism on typical growth charts? Of course they're going to be off the map.

Why aren't we tailoring benchmarks based on a child's condition???

Thanks Barb!

Thank you Dr. Gibson. I really appreciate your post.

I have sensed from some in the rehab/medical community that resources are better expended on a disabled child who can be rehabilitated to be almost "normal" than on a very disabled child who might make great personal strides but will never come close to having the abilities of other children.

It is great to encourage discussion in this area.

This comment has been removed by a blog administrator.

This post was originally posted on 3:37 pm on Monday, December 10th. Edited for spelling
Do we ever stop, and question our values'? Or should we?

Thank You Dr. Gibson for such an affluent post for the mind.

As a person with CP, I grew up receiving therapeutic interventions at 8 month of age. If there is anything that my parents and I will agree on is the reality that I missed out on a lot of "life" our debate frequently lands on the definition of "best interest". Although, I am not yet a parent myself, perhaps a moderately sufficient statement can be found in the product description on amazon for Andrew Solomon's newest novel: Far From the Tree: Parents, Children and the Search for Identity. In the description it states: " All parenting turns on a crucial question: to what extent parents should accept their children for who they are and to what extent they should help them become their best selves?”

While, I am not even going to attempt to answer that question!! What I am going pose is: aren’t the concepts of health and success conceive by our society? If so, I feel strongly that in order to shift paradigm we must become ever more cognizant of the fact that a child is developing regardless if they are receiving therapeutic interventions or not; therefore, a child's sense of self is shape while they are spending their time at physio. So is not whether is "right" or "wrong" is much more intricate… I feel is a matter of value entangled with personal beliefs’ and social pressures under societal influence. We all put our time, effort and money into people and things we value, and in return we hope to receive affirmation by the community at large (society). The question I always like to ask is why. I understand that it’s only natural for parents to want “the best” for their children, and there aren’t many arguments against it. Yet, what does “best” mean? What would it look like? As Dr. Gibson pointed out:

"World Health Organization’s International Classification of Functioning, Disability and Health puts the rehab focus on social participation rather than fixing bodies, and acknowledges that function results from many influences.

But the politics of disability are still largely absent in rehab talk".

Why? How come?

The World Health Organization is a "branch" of the United Nations Economic and Social Council in short is part of the UN which is no doubt an organization which, with an effort in attempt to present " global societal" values. So, what are truly our values? And do our decisions, regulation, and actions fully reflect, and align our values as a society?

As we continue to evolve, I hope it won't just be "a grind of the fittest" but also, a process of defining and fostering our humanity as well.

I want to conclude with a statement made by the current United States Secretary of States, and former First Lady, Hillary Rodham Clinton.

"Woman's rights are human rights"

Thus, I strongly feel: disability rights are also human rights.

I feel my role as a parent is to see what's good, great even in my children and do whatever I can to support those gifts. And bring them forward so others can appreciate them to.

Secondly, I try to make sure my kids do at least one thing each day that they absolutely love.

My son loves the water. I've always wanted him to learn to swim. But the number one priority is to preserve his enjoyment of the water. Even if he can't swim in the end, he can at least enjoy soaking in a hot tub at the end of the day.

What is life without joy?

I've had many comments on what great personalities my kids have. I don't think they would be as kind and empathetic if I was pushing them all the time.

This is a very well written piece that should make all pediatric therapists stop and think. As a pediatric physical therapist I like to focus on achieving functional skills rather than "normalizing" movement. I do try to include the child and of course the parents on each goal set to ensure that the child is motivated to achieve the functional goal.

I do think that standing and walking at a young age(not necessarily independent walking with or without an assistive device) is a crucial part of cognitive and social human development in addition to motor skill development.

I agree 100% that when walking is not a functional means of mobility one should explore manual or motorized wheelchairs.

I think the idea of different motor development charts for different diagnosis is an excellent idea although very hard to accomplish when we look at cerebral palsy which can present at so many varying degrees. There are charts like this available for children with Down Syndrome but most therapists do not use them. This most likely has to do with getting therapy costs covered - it is hard to get therapy covered if you do not score below a certain level.

I believe that as pediatric therapists we have to start this important discussion as to what are we trying to accomplish long term. With budgets getting tighter and tighter we need more research to indicate that we are making a difference and to some degree is it emotionally and socially beneficial for the child to receive years of therapy services?

Really interesting post and the responses highlight to me how differently we all think about the things that are important to us and our children.
My son, for example, has significant challenges because of his cerebral palsy, and he WANTS to walk, despite using what many would call an 'abnormal' pattern of movement and not being very efficient at it either! At age 7, his physiotherapists have never encouraged him to walk, yet he has always wanted to do it, and LOVES to do it (with our physical support or with a walker). It isn't functional, we are told, but whilst my sons few slow and very excited steps won't have an impact on our very dysfunctional family life :), they do give him a hard to beat feeling of independence that he may not experience as he gets older. I think independence is underrated, but like function, the criteria for achieving is set at very different levels depending on the individuals abilities and aspirations. We live in the UK by the way, but I don't really think that matters in this discussion. I would like to think that as a mum, I make decisions about my sons' therapies (when they are available!) based on how well I know him: does it actually reduce his quality of life or is he excercising his ever improving 'making choices' skills by telling me he would rather be doing something else?? As I would with his brother who doesn't have disabilities, I make decisions because he is 7 years old and can't make them for himself (or can but he would choose eating chips and chocolate and watching TV all day)and as a parent, I feel I am best placed to make decisions for him that may affect his future - independence, quality of life and general happiness.
I really think it is important that the discussion is kept central to the child and the family, because what I have heard from the other posts is that some people, who possibly have more potential or ability walking than my son does, don't necessarily want walking to be a focus of therapy, but may prefer a power wheelchair for speed and efficiency to keep up with their lifestyle. However, someone like my son, whose potential for independent walking is minimal, and his ability in walking is 'poor', benefits hugely from the enjoyment he gets from it. If resources are an issue, then as long as it doesn't put a person at risk, should we not direct therapies to those who want them, and/or who are in a position to decide whether they will improve their lives, rather than continuing to strive for 'normal' when a) no-one seems to be able to define it and b), if they can define it, they don't necessarily want/need it?? :)