Grech, Grue and Thomas for Online Symposia December 2023

Recording: Shaun Grech, Jan Grue and Gareth Thomas
Passcode: u2!85q@Q

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Critical Disability Studies: contesting ‘development’ in the global South.
Shaun Grech (he/him)
Honorary Associate Professor in the Department of Health and Rehabilitation Sciences, University of Cape Town
Email: S.Grech@criticalinstitute.org

To reference this paper: Grech, S. (2023). Critical Disability Studies: contesting ‘development’ in the global South. In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield.  

Bio: Shaun Grech is Senior Academic Consultant in Disability Inclusive Disaster Risk Reduction (DIDRR) with Christian Blind Mission (CBM); Honorary Associate Professor in the Department of Health and Rehabilitation Sciences, University of Cape Town; and Affiliate Associate Professor, Department of International Relations, University of Malta. He is also Editor in Chief of the International Journal Disability and the Global South.

For the past 20 or so years, I have been researching the space between disability, poverty, development and more recently humanitarian action as an academic and a consultant. Through that, came the inevitable encounter with decolonial studies as (like a few others) I questioned the problematic space that is the development sector (Escobar, 1995), the coloniality of knowledge and power (Quijano, 2000), the insensitive, unresponsive and disabling interventions that perpetually reframe an Other in need of some or other ‘illuminated’ intervention… a Southern subject that it seems, remains inept, incapable of survival, wrapped in a colonial lexicon of lack, maintaining deep geopolitical and historical asymmetries (Grech, 2015). 

Over the past years, I have been working more closely with International NGOs in research and at the fringes of academia looking at disaster risk reduction and humanitarian action more closely and how persons with disabilities are positioned, framed, forgotten… left to die, including by these same organisations paying me to presumably help them understand what is not working and what they can do better (see Grech, 2023). But many organisations are not very good at change, especially one that challenges fixities in their own thinking and practices. Maintaining the status quo and organising complex life in yet another logframe by an unknowing technical ‘expert’ in a distant European office is the way to go. Asking for more to be done and differently becomes idealistic, probe any further and the binary card is pulled out- ‘you are an academic… practice is different and you cannot dilute things enough for practitioners on the ground’.   

Like much of my academic work and life, a lot has been accidental, and so was my encounter with Critical Disability Studies, which I came to via development studies. But I really am no expert in anything, CDS included. Critical Disability Studies has provided me with a language to question the various margins, intersections, constructions and power in sectors and areas (disability and development; and disability inclusive disaster risk reduction and humanitarian action) that are often hardly theoretical and where difficult questions are perceived to be problematic, stall the flow, go against strategy, or are a plain nuisance. CDS, more than anything, has provided me with a positioning, transdisciplinary at its core, with porous borders, to be able to articulate the multiple problems that I see in my work as I traverse the uncomfortable space of academia and practice to understand disability in its complexity and heterogeneity in very poor spaces in the global from the margins. But more than anything, CDS gave me a phantom ‘field’ under which to ask my naughty questions. That I come from CDS, somehow gave me a ‘free pass’ to blurt them out in workshops, meetings, conferences, in organisational premises. Issues of power, representation, disablism (in our practices and in the name of ‘development’), identity and identification (who speaks for who and can they?), disability as historical and political, the ableism within a neoliberal development premised on able-bodiedness, a development evidently not for every body (Grech, 2011, 2021) (see also Nguyen, 2018 and Bezzina, 2020). In particular, it provided me with a very important space to critique and challenge some basic tenets of more ‘fundamentalist’ segments of disability studies and related concepts developed in the global North as these travelled across space and place, seeking to simplify, contain, generalize, homogenize and export the disability experience everywhere (see Grech, 2009, 2015a). While these concepts may be important political tools, their exportation does little to shift their hegemonic force, the colonial baggage that frames and legitimises them as superior ‘knowledge’, and the epistemic violence that ensues when concepts and much theory from the global South is hardly ever read (see Alatas, 2003; Collyer and Dufoix, 2022). I am still to see a global South disability studies and theory consumed and becoming legitimate everywhere, without authors having to qualify and explain the countries they write from. CDS to me is about (self)reflection, including on our own simplifications as we seek some or other escape from epistemic violence too…the tentative remedying often imbued with the same traps. This perhaps includes emerging decolonial perspectives in disability, which to me, have been stuck in an impasse for a while now…will merely complaining that disability discourse and theory is co-opted by the global North for the 1000^th time cut it? Will calling for global South academics only to speak about the global South, genuinely ‘decolonize’ discourse? Do academics in urban spaces of privilege in the global South always know what is happening in the impoverished rural areas of their own country or continent, let alone a geopolitical space filled with complex historicity? Do we need to look at a collaborative process of knowledge generation, to move towards levelled and inclusive epistemic and practice justice and alliances? Do we run the risk of disqualifying thinking on the basis of identity and locational politics? Is there anything to learn and draw from spaces of privilege too? Can/should we move beyond this limited ‘insider-outsider’ binary? (see Dror, 2022). Importantly, how can critical research reflect, disrupt and act? 

Thanks to CDS, I have employed theory from many places, from my roots in rural development and agricultural economics to psychology, sociology and Latin American decolonial studies, because in truth I am still confused, even after all these years. Perhaps, what CDS has contributed most to my research, theory and scholarship is comfort with not knowing, where this not knowing may also be productive, perpetually going back to the drawing board and raising more questions. For me, it has been a process of trying to understand what life is like in rural poverty, in different spaces and places, precarious livelihoods in informal economies, living with no social protection, the agricultural cycle, drought, the fictitious $2 a day construct, the impossibilities of accessing health care... days lived in dramatic pain, pain that is talked about but drowned out by urban DPOs; where individual rights may have little to no currency in close knit communities and where policies are often not worth the paper they are written on…can they eat ‘rights’? It has been about trying to understand the (im)possibilities of living life on the brink of survival every single day…in uncertainty and through disasters, only with and through agentic disabled families and to look at the spaces for change, including in contradictions, to embrace what Anzaldua (1987) would call multiplicity, including of subjectivities. My area of research and my thinking have been transformed not so much by the theoretical developments of CDS per se or by theory, but instead by the belief that life is really shit for many disabled people in such contexts, that we need to, we MUST do better, and how asking difficult questions, uncomfortable questions, is a necessary and mere start, but never an end.  

References

Alatas, S.F. (2003). Academic Dependency and the Global Division of Labour in the Social Sciences. Current Sociology, 51 (6), p. 599-613.

Anzaldua, G. (1987). Borderlands/La Frontera: The New Mestiza. 2nd Ed. San Francisco: Aut Lute Books

Bezzina, L. (2020) Disability and Development in Burkina Faso: Critical Perspectives. London: Palgrave

Collyer, F. and Dufoix, S. (2022) Rethinking the Epistemic Compass. Revue D'histoire des Sciences Humaines, 41, 41.

Escobar, A. (1995) Encountering Development: the making and unmaking of the third world. Princeton: Princeton University Press. 

Grech, S. (2011). Recolonising debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education, 15(1), 87-100.

Grech, S. (2015) Decolonising Eurocentric disability studies: Why colonialism matters in the disability and global South debate. Social Identities: Journal for the Study of Race, Nation and Culture, 21(1), 6-21.

Grech, S. (2015). Disability and Poverty in the Global South: Renegotiating Development in Guatemala. London: Palgrave Macmillan

Grech, S. (2021). Critical thinking on disability and development in the global South. In Brown, R., Maroto, M. and Pettinicchio (Eds.), The Oxford Handbook of the Sociology of Disability. New York: Oxford University Press.  

Grech, S. (2023) Mainstreaming Disability Inclusive Disaster Risk Reduction in Community Based Inclusive Development: A Situation Analysis. Germany: CBM and University of Cape Town. 

Dror, L. (2022) Is there an epistemic advantage to being oppressed? Noûs, 57(3), 618-640

Nguyen, X.T. (2018) Critical disability studies at the edge of global development: Why do we need to engage with Southern theory? Canadian Journal of Disability Studies, 7(1), 1-25.

Quijano, A. (2000). Coloniality of Power, Eurocentrism, and Latin America. Nepantla, 1(3), 533-580.
 

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The sick role and critical disability studies: Making invisible work visible.
Jan Grue (he/him)
University of Oslo
E-mail: jan.grue@sosgeo.uio.no

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.

To reference this paper: Grue, J. (2023). The sick role and critical disability studies: Making invisible work visible. In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

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?

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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

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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.

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How is my area of research, theory and scholarship transformed by an engagement with critical disability studies?
Gareth M. Thomas (he/him)
Cardiff University
Email: thomasg23@cf.ac.uk

Gareth M. Thomas is a Reader in the School of Social Sciences at Cardiff University, UK. He is a sociologist interested in disability, health/illness, medicine and reproduction.

To reference this paper: Thomas, G. (2023). How is my area of research, theory and scholarship transformed by an engagement with critical disability studies? In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

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I am a sociologist by background, with a history of working within – and at the intersections of – medical sociology. Medical sociology, broadly conceived, applies the theories and methods of sociological thinking to the study of (among other things) the social organisation of medicine and health care, the social determinants of health, and the life-worlds of ill and/or disabled people.

My first substantive engagement with critical disability studies (CDS) began several years ago. I had previously dabbled fleetingly in its scholarship, specifically when carrying out a study on prenatal screening and testing. Yet, it was only later – during an interview-based study with parents of children with learning disabilities – that I delved deeper into scholarship which counted itself as being within the broad church of CDS.

Previous research on this topic was somewhat ample, focusing on, for example, how parents (and particularly mothers) were cast as heroic and selfless trailblazers, how parents were perceived as complicit in their child’s oppression (e.g. hindering development and/or promoting an impairment-focused understanding of disability), and how parents dismantled deficit narratives of parenting disabled children. Others used the concept of ‘stigma’, citing Erving Goffman’s (1963) book on this very topic, to understand parents’ experiences. This work, often drawing upon Goffman’s concept of ‘courtesy stigma’ (how stigma extends to close affiliations of people who are stigmatised), examined how public encounters can be tense and troublesome for parents (see: Gray 2002; Green 2003; Koro-Ljungberg and Bussing 2009).

In my own work, I intended to examine – among other things – if parents told alternative stories. I wanted, in turn, to see whether, and if so how, parents deviated from tragic and pitiful (and, yet, popular) representations of disability. During interviews, parents talked about their lives in positive terms. Their children were a source of both celebration and pride. Parents’ lives were valuable and, for some, ordinary. They lived with, not despite, disability. The principles and sentiments of CDS helped me to make (greater) sense of such experiences. With ‘stigma’ seeming to be an inadequate descriptor for their lives, CDS provided me with an appropriate language to understand parents’ reflections. Specifically, they said their children: are part of the wide diversity of the human condition; disrupted normative and ableist assumptions about what is ‘normal’, and; countered popular orthodoxies and discourses of deficit. In short, parents ‘cripped’ (Kafer 2013; McRuer 2006) understandings of parenting disabled children; they disassembled normative scripts assuming a life of misery and misfortune.

Nonetheless, parents did not always tell such rosy stories. They told me, at length, about their experiences of navigating institutions, and the exhaustion and stress caused by constantly having to – in their words – ‘fight’ and ‘battle’ to secure resources for their children. Parents lamented the constant need to navigate, frequently with considerable difficulty, what they collectively referred to as ‘the system’. As shown elsewhere (e.g. Blum 2015; Runswick-Cole and Ryan 2019), parents competed for scarce resources ‘in fragmented systems that often do not seem to value their children as people’ (Green et al. 2016).

I made sense of such experiences with reference to two bodies of scholarship. First, I read recent contributions on rethinking the sociology of stigma, which recognises the need to reconsider stigma through a lens of power, structure, and inequality (e.g. Scambler 2018; Tyler 2020). Second, I engaged with CDS scholarship to analyse parents’ stories that located their troubles not in their children’s bodies, but in the societies in which they live. One mother crisply summarised this position to me during an interview: ‘[my son] doesn’t drive me nuts. It’s those things around him that drives you nuts’. The experiences of parents were a product of the conditions of ‘disablism’ (i.e. the social, political, and cultural exclusion of people with physical, sensory, and/or cognitive impairments) and ‘ableism’ (i.e. the ideologies upon which the able-bodied, individual, and productive citizen are based – see here). One concept from CDS that I found very helpful here was ‘neoliberal-ableism’ (Goodley 2014), where disabled people and their parents (particularly mothers) see their rights eroded under neoliberal regimes and belt-tightening. It reminded me of Katherine Runswick-Cole and Sara Ryan’s (2019: 1129) claim:

Mothers are forced to meet these challenges as they try to weave, ease, negotiate or batter a path for their children to lead flourishing lives. At times it can feel like being in the trenches with strong binoculars, scanning the terrain ahead with fear and horror. Many mothers quickly learn that it is not their children who need fixing but the world around them.

In this and other research projects, CDS has substantially transformed my scholarship. I am always reminded of, and inspired by, the mantra that we should start with disability, but never end with it (Goodley et al. 2019). My enthusiasm for the tenets and sensibilities of CDS is unlikely, though, to surprise those likely reading this essay.

However, I simultaneously push for an open engagement with other disciplines. I recently published an article, and co-edited a special issue in the journal Sociology of Heath and Illness, on the lack of dialogue between disability studies (broadly conceived) and medical sociology. My worry is that scholars will continue to buy into the worldview of a single discipline in ways that encourage insular scholarship (i.e. of preaching to the converted) and nourish silos. My research, included that outlined above, engages with concepts and ideas from CDS and from (medical) sociology, anthropology, and science and technology studies (STS). Similarly, in an upcoming talk at iHuman, I consider the possibilities for convergence between CDS and the work of Erving Goffman, whose scholarship (and especially on stigma [see above]) has been subject to intense scrutiny within disability studies. Drawing on an ethnography of a café run with people with learning disabilities, and bringing together Goffman’s (1956) notions of ‘deference’ and ‘demeanour’ with CDS-associated concepts (e.g. ‘crip time’; ‘disablism’), I show how interactions between people with learning disabilities and members of the public are organised and imbued with acts of dis/respect.

My point, here, is that I want to consider how CDS can enter into meaningful conversations with other disciplines. CDS must be wary of erecting rigid boundaries that leaves little room for collaboration. Both engaging with ideas from divergent sources and taking ideas from CDS into new circles is crucial. We might ask, then, how CDS can also be transformed by an engagement with research, theory, and scholarship from elsewhere.

References

• Blum, L.M. 2015. Raising Generation Rx: Mothering Kids with Invisible Disabilities in an Age of Inequality. New York: New York University Press.
• Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. New York: Penguin.
• Goodley, D. 2014. Dis/Ability Studies: Theorising Disablism and Ableism. London: Routledge.
• Goffman, E. 1956. The nature of deference and demeanour. American Anthropologist 58(3): 473–502.
• Goodley, D., Lawthom, R., Liddiard, K. and Runswick-Cole, K. 2019. Provocations for critical disability studies. Disability and Society 34(6): 972–997. 
• Gray, D.E. 2002. ‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness 24(6): 734–749.
• Green, S.E. 2003. “What do you mean ‘what's wrong with her?’”: stigma and the lives of families of children with disabilities. Social Science and Medicine 57(8): 1361–1374.
• Green, S.E., Darling, R.B. and Wilbers, L. 2016. Struggles and joys: a review of research on the social experience of parenting disabled children. In: Sociology Looking at Disability: What Did We Know and When Did We Know It. Green, S.E. and Barnartt, S.N. eds. Bingley: Emerald Publishing, pp. 261–285.
• Kafer, A. 2013. Feminist, Queer, Crip. Indiana: Indiana University Press.
• Koro-Ljungberg, M. and Bussing, R. 2009. The management of courtesy stigma in the lives of families with teenagers with ADHD. Journal of Family Issues 30(9): 1175–1200.
• McRuer, R. 2006. Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press.
• Runswick-Cole, K. and Ryan, S. 2019. Liminal still? Unmothering disabled children. Disability and Society 34(7–8): 1125–1139.
• Scambler, G. 2018. Heaping blame on shame: ‘weaponising stigma’ for neoliberal times. The Sociological Review 66(4): 766–782.
• Thomas, G.M. 2022. A legacy of silence: the intersections of medical sociology and disability studies. Medical Humanities 48(1): 123–132.
• Tyler, I. 2020. Stigma: The Machinery of Inequality. London: Zed Books.