How Function and Disability are Socially-Constructed

COMMENTARY

Author: Shaun Cleaver

While working as a physiotherapist for a non-governmental organization (NGO) in rural Haiti, I met many people who were “old” and could not walk. Interestingly (to me), neither these people nor their families sought out my services to remediate the condition of non-walking. Conversely, it was I who found these “old people” through community needs assessments (1): I was looking for people with functional difficulties and made this search concrete by requesting to meet “people who cannot walk.” In talking to “old people” and their families I gradually learned that my needs assessments had an unforeseen internal paradox: my search for people with functional difficulties had identified people who were functioning exactly how they were expected to. True, the “old people” could not walk. But why would they need to when family members carry them everywhere?

Gaining insight in unexpected places

The purpose of my work in Haiti was to provide services and build a basic rehabilitation program (2,3). At the same time, my experience of immersion offered me a comparative perspective, illuminating taken for granted assumptions (4) that I did not even realize that I held, and allowing me to see my own culture differently. My experiences with “old people” – who I will refer to as elders from this point forward – were informative during the development of a rehabilitation program in rural Haiti. These experiences also provided insight into how I thought about life course stages (5), function, dis/ability, and ultimately rehabilitation. Given that rehabilitation’s roots have primarily developed according to dominant Western European and North American cultural beliefs (6), a comparative perspective can be valuable in questioning rehabilitation in productive ways in order to expand its possibilities.

Coming to see new and different things in a different culture

From my initial vantage point, Haitian elders’ inability to walk was of concern. According to my societal and professional acculturation, independence across the life span was important and often achievable. In particular, it was widely understood that rehabilitation could help people maintain their independence as they age (7), and was therefore worth significant investment (8). Because of these beliefs, I was not surprised to see the walking capacity of Haitian elders improve in the instances that I worked with them for that purpose. Yet gait training, exercises, assistive devices, and environmental adaptations seemed to be amusing activities of little consequence for Haitian elders and their families. When I had the chance to follow up with the elders, I would typically find that the treatment gains had subsequently been lost.

Looking back on my experience in Haiti, I realize that I must have appeared strange to the elders, their families, and their communities. Here was this ‘guy’ from a place that could only be imagined, with mundane solutions for a non-problem (the walking capacity of elders). If I were to reverse the roles and imagine being on the receiving end of such a visitor, it would be as if someone parachuted from the sky to my grandparents’ nursing home in order to assess their capacity to develop web applications; offering “treatment” to all of the residents who could not do this well.

Connecting dots to reveal socially-constructed categories

From community needs assessments, individual patient assessments, and treatment sessions, I was able to identify a few dots that might connect. First, it seemed widely accepted that Haitian elders would live sedentary lives with their families. Since elders were not expected to walk, it is possible that their walking performance could have declined, which may have eventually led to a real reduction in their capacity (9). In effect, it seemed that the life course stage of elder was a more important determinant of walking capacity decline than was any “natural” aging process.

Life course stages are related to aging, but more importantly, are socially-constructed categories. In Western societies (like Canada), the dominant life course stages have been identified as childhood/schooling, employment, and retirement (5). There are, of course, blurred lines and many exceptions to those stages, but these do not discount the power of the dominant norm. One perspective on these stages is that they are constructed from a general valuing of independence and productivity (5), even if few of us recognize that we hold these values. It seems consistent with this perspective that older Canadians would want to maintain their independence. It is also consistent to name that final life course stage relative to work (i.e., retired), even though we often use the term senior citizen as a synonymous substitute. By contrast, in rural Haiti, people do not seem concerned about independence in their final life course stage. These different value systems seem to be reflected in language. When speaking English, I never call a Canadian person old; I can think of few Canadians who are happy about aging and its consequences therefore it feels insulting to identify a person as old. Meanwhile, I regularly used the term equivalent to old when speaking Creole and referring to Haitians. There, aging was neither dreaded nor stigmatized. It is only when I translate my Creole speech to English that it feels awkward and uncomfortable to speak of “old people.”

Socially-constructed life stages affect function, but function is not synonymous with disability

Presuming that the dots connect, and becoming an elder in rural Haiti really does lead to the inability to walk, why does it matter? I propose that the most important insight is the relation between life course stage and disability. People in rural Haiti most definitely recognized the phenomenon of disability – the Creole slang term translates directly as “crooked body” and is derogatory – but no one thought of the non-walking elders as disabled.

In one sense, the situation in rural Haiti shares a commonality with the situation in Canada: few would argue that the social meaning of limited walking capacity is constant across life course stages. Of course the social meaning of limited walking capacity is (usually) not the same for an 80-year-old retiree as it is for a 40-year-old adult. Yet the statistical research that drives Canadian health policies presents a disability prevalence that rises with age (10), a conclusion that is premised upon measures of physical capacity that are generally inconsiderate of life course stage. Do our survey measures, where we ask people at all life course stages about difficulties “walking on a flat surface for 15 minutes without resting” (11) fully align with our social meanings? Could our survey measures even be one of the factors that influence our social meanings, causing us to think primarily about a person’s independence and productivity? Through this mechanism, might we be creating problems without being completely cognizant of the reasoning for doing so?

Conclusion

In my role developing basic rehabilitation services in rural Haiti, I did not recommend that my organization focus on helping elders maintain their independence. That said, it is important to recognize that no culture remains locked in time, so I hope that the organization re-visits that recommendation regularly. Nonetheless, the observations that I accumulated in rural Haiti led to insights that were more far-reaching: they revealed the tremendous impact of socially-constructed categories and concerns. Many of the foundational premises upon which rehabilitation is built – function, dis/ability, and to a different degree, life course stage – are socially-constructed. But to what degree do we recognize these as such? As practitioners and scientists, do we allow ourselves to take these for granted, inadvertently seeing them as permanent and fixed? Or do we recognize these as malleable, constantly (re)created by societies with real-world effects?

It is true that many of us see the substantial need for rehabilitation services, and consequently devote ourselves to developing more and “better” rehabilitation strategies. In this environment, where the value of rehabilitation is taken for granted, thinking about the socially-constructed origins of many of our foundational premises might seem like a philosophical distraction. I get that. But recognizing the socially-constructed origins of many of our foundational premises creates opportunities for us to see things differently – opening new doors to innovative approaches and valuable different outcomes.

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References

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