The importance of context: what are our assumptions about childhood disability?

As readers of, and contributors to, this journal we are clinicians, researchers, leaders in the field of childhood disability, teachers, and knowledge brokers to others.1 These many roles provide us with opportunities to try to influence people about our understanding of the issues, including families of children with impairments, colleagues in other disciplines, citizens in the broader community, policy makers, and people whose roles and activities do – or might – have an impact on the lives of children with impairments and their families. To be successful in these roles several elements must line up including, of course, being clear about our ideas, and having receptive listeners. What may be less obvious is how important it is for us to know how others think about childhood disability so we can blend our ideas with theirs. This requires us to be explicit about the context of our thinking and theirs. Two recent experiences led me to consider these issues. One concerns the work of one of my doctoral students who is interviewing parents of children with cerebral palsy in a low-income country and sorting their concerns into the categories of the WHO's International Classification of Functioning, Disability and Health (ICF).2 It is very clear that these parents have an almost-complete preoccupation with their children's ‘body structure and function’; this of course reflects the focus of the clinicians with whom those children and families are working. The second insight relates to my regular travels to many parts of the world in which, again, the concerns in the professional community appear to be almost exclusively with treatment (often based on prescriptive schools of therapy), with the strong emphasis on remediating impairments. There seems to be a significant effort to try to fix things, with less evident awareness of the important potential downstream effects on child and family development, community engagement, participation, and life-course perspectives. Consider this question: How do we think about childhood disability? The answer depends, at least in part, on who we are and where in the world we work. For example, in the western world in the 21st century there has been a growing interest in the concepts of the ICF framework, with a particular emphasis on ‘participation’.3 This is illustrated by a colleague's recent PubMed search of the terms ‘children, disability, participation’ that shows an exponential growth of interest in this idea. Between 1980 and 1990, the average per year was 3.4 articles; between 1991 and 2000 the average more than doubled to 8.6 per year; in the first decade after the ICF appeared the number grew to 35 per year; and between 2011 and 2014 the average was already at 93 articles per year! For me the lesson from these (admittedly anecdotal) observations is simply this: to the extent that we want to improve the world for children with impairments and their families, we must first articulate the assumptions under which we work in order to recognize the context of our thinking. My interest in participation and quality of life of children with impairments probably sounds like a foreign language to people focusing on treating impairments with sustained and intensive developmental therapies; while this very strong emphasis on therapy is, to my current way of thinking, missing the boat! It is not that one approach is right and the other wrong – it is simply that communication among people singing from very different song sheets will likely end in discord and failure. What do our many (and certainly varied) perspectives on childhood disability have in common? We all want children to be the best they can be – to function well and be engaged in their family and community to the greatest extent possible. We are simply approaching the issues from different vantage points and our failure to be explicit in setting the stage certainly leads to non-communication and frustration on all sides. Thus we need to start our conversations with others about childhood disability by asking them how they understand this idea and what they think are the right ways to proceed. My personal understanding is that the ICF framework allows everyone's ideas to be situated somewhere in the discussion. With this shared structure as a starting point we can discuss and negotiate variations on the theme of how best we might be able to be helpful to children with impairments and their families – and in the process enrich their lives and the communities in which they grow and develop. This is a challenge to which we can and must all direct our energies.

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