The sick role and critical disability studies: Making invisible work visible

Jan Grue (he/him), University of Oslo

Jan Grue is Professor of Sociology at the University of Oslo. He is currently PI of the research project “The Politics of Disability Identity”, which investigates the contemporary social and cultural preconditions of disability inclusion. His memoir “I Live a Life Like Yours” (2021) is published by Pushkin Press in the UK.

For the video recording of this presentation, please see the online symposia page.

Thank you for the opportunity to speak here today. I should first note the question I was asked to address: How my area of research, theory, and scholarship is transformed by an engagement with critical disability studies. Really, my main area of research is critical disability studies, but I work in a department of sociology, partly teaching and research the sociology of health and illness – and the intersection of these disciplines (Grue, 2011, 2016; Grue et al., 2015). 

Formerly, that field was mostly known as medical sociology, and the difference is telling. The perspectives of clinical medicine were dominant for a long time, and medical sociology very much put the medical professions at the center of inquiry.

Over time, attention has shifted to the perspectives of patients. But arguably, health has remained the norm, illness has remained the exception, and disability has remained at the margins. 

As an example, the classical sociological account of the sick role proposed that being sick, in a socially legitimate way, was a matter of submitting to a doctor’s care in order to be given an exception from the obligation to work. In the ideal-type scenario, the patient follows a treatment regimen and returns to health; normality is restored.

Critical disability studies has several questions to ask about this scenario (Grue, 2021). 

First, and most directly: What happens when people do not get well? What social roles are available, beyond those of, one the one hand, “healthy, abled-bodied worker” and on the other, “temporarily ill patient”? 

Second, and more subtly: How do social norms about health, illness, and productivity structure the everyday experiences of people with long-term or permanent health conditions and impairments?

*

Answering these questions requires a cognitive shift. Etymologically, “patient” derives from the Latin word for “suffering”, but the word also connotes waiting and passivity. One of the key findings in critical disability studies thoroughly subverts this meaning. 

Occupying the “patient role”, whether because of illness or impairment, means work. The logistical work of negotiating medical bureaucracy, the emotional work of interacting with everyone involved, and the sheer physical work of living in the world with reduced capacities. 

These efforts are encapsulated by another sociological concept, that of invisible work, which describes work that is neither recognized nor remunerated as such. 

Here, critical disability studies establishes an analytical link between multiple domains, and provides a new perspective on an old dynamic. In order to achieve social legitimacy as patients, people have to work at the patient role. They need to expend effort in order to be perceived as sick in the right way – not as shirkers or malingerers. 

In order to be perceived as good workers and productive citizens, they need to expend effort in order to conform to norms of productivity that presuppose good health. 

If you’ll forgive me another etymological observation, this constitutes a dilemma, a choice between unfavorable alternatives. And for each alternative, the pathway to social legitimacy, to avoiding stigma in some measure, requires invisible work. 

Feminist sociologists like Arlene Kaplan Daniels, who first developed the concept of invisible work (Daniels, 1987), suggested that it was socially encoded as the sort of thing a person is expected to do, or has to do, normatively speaking, for example because of their gender. 

Similarly, the invisible work associated with impairments and long-term health conditions are tasks that are simply go with the territory, they are part of how the world operates. Negotiating hostile environments, spending twice the money and three times the effort in order to access services, compromising your health through invisible work so that you can secure some form of visible, paid work – all this is natural.

Of course, making the culturally, socially, and historically contingent seem natural is part of how ideology operates. 

The “critical” part of critical disability studies has many meanings, but I’ll argue that at least one of them draws a connection to the Frankfurt school, and ultimately to a Kantian notion of critique. Here, the point of critique is to expose the contingences, preconditions and presuppositions of a particular worldview. To show that the supposedly natural is in fact a human construct. 

In the sociology of health and illness, then, the potentially transformative contribution of critical disability studies is to point out how closely a concept like health is keyed to the ability to work under particular conditions, that is, to an externally defined benchmark of productivity

*

For this series of talks, I was told that the contribution should be provocative. I am not sure I have lived up to this expectation thus far, so let me attempt a brief thought experiment. Drawing on the concept of invisible work, we might ask: What would a strike in this field look like?

There is some precedent for this thought experiment, not least in Arlene Kaplan Daniels’ point that invisible work is a gendered support system for visible, paid work. Without the invisible work of women, in the home, men would not be in a position to go to work. 

And in a 2003 issue of the feminist periodical Off Our Backs, the issue of disabled women’s participation in the Global Women’s Strike was raised (Kalyna & Glasman, 2003). The authors pointed out that “women with disabilities don’t escape the work all women do; [they] also care for partners, relatives and friends, raise children and do the housework – meeting people’s needs while coping [with] disability”. 

This is an intersectional point, in the sense developed by Kimberlé Crenshaw (Crenshaw, 1989). Intersectionality provides a lens through which networks of power and oppression become more clearly delineated. 

A strike against the invisible work of disability, then, might make more visible how this work ultimately functions to support both an oppressive labor market and a view of health as a means to the end of formally recognized work. 

It might make more visible how illness must be performed in a particular way in order to be perceived as socially legitimate. 

It might make more visible the nexus of norms and values surround health in which paid employment is at the center.

Such a strike might not shake the foundations of late capitalism. It would be more akin to a hunger strike, a moral action that inflicts incalculably greater damage on those striking than against the system that surrounds them. 

But it is very much conceivable, and it would, perhaps, make the invisible visible. 

References

Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. u. Chi. Legal f., 139.

Daniels, A. K. (1987). Invisible work. Social problems, 34(5), 403–415.

Grue, J. (2011). Disability and discourse analysis: Some topics and issues. Discourse & Society, 22(5), 1–15.

Grue, J. (2016). The social meaning of disability: A reflection on categorisation, stigma and identity. Sociology of Health and Illness, 38(6). https://doi.org/10.1111/1467-9566.12417

Grue, J. (2021). The double bind of social legitimacy: On disability, the sick role, and invisible work. Sociology of Health & Illness, n/a(n/a). https://doi.org/10.1111/1467-9566.13692

Grue, J., Johannessen, L. E. F., & Rasmussen, E. F. (2015). Prestige rankings of chronic diseases and disabilities. A survey among professionals in the disability field. Social Science & Medicine, 124(1), 180–186. https://doi.org/10.1016/j.socscimed.2014.11.044

Kalyna, M., & Glasman, C. (2003). Women With Disabilities Go On Strike! off our backs, 33(1/2), 41–43.