Disability as Method

By Arseli Dokumaci, University of Copenhagen

How do people with different forms of disabilities live the everyday? How do you dress, undress, cut your food or shake people’s hands when you have rheumatoid arthritis? How do you figure out where to get on or off the bus or pay for something at the cash when you are blind? How do you move about when your balance is affected by a painful illness? What possibilities emerge for living, sensing, thinking, and performing the everyday differently when disability enters the stage? These are the questions that drive my research and ethnographic curiosities. I am fascinated by the questions brought up by the experiencing of disabilities, and in how disability allows us to examine the taken-for-granted ‘uses’ that we have made of things, objects, and places. Along with many other scholars of disability, I consider disability – contra its traditional assumptions as loss and tragedy – as a form of resourcefulness and an opening for remaking the world in otherwise unimaginable ways. And as a visual ethnographer, and a video-maker, I take up the offerings of visual media to explore these openings and possibilities.

While I work within the intersections of disability and performance studies, my research does not remain wedded to any particular discipline or field. I theorize from the actual, day-to-day living with disabilities, and I take up any theory, any approach or framework that the ethnographies of disability take me to – be it from anthropology, performance, ecology or sociology. I call this process of moving, sensing and thinking alongside with disability as “disability as method”, and this remains central to my research.

As part of my dissertation, for example, which was – to put it paradoxically – a visual ethnography of invisible disabilities, I collaborated with individuals who have invisible disabilities related to rheumatoid arthritis. During my fieldwork in Turkey and Quebec, I visited my participants at their homes, interviewed and filmed them as they performed ‘simple’ daily tasks, such as buttoning a shirt, tying shoelaces or preparing food. In the process, I came to witness an incredible heterogeneity of techniques that my participants came up with in order to get through the everyday, not despite, but because of living with a chronic, painful, disabling illness. Thinking through these encounters, and adopting “disability as method”, I then found myself within the field of ecological psychology, engaging with James Gibson’s theory of affordances (1979) – a theory, the origins of which has nothing to do with disease or disability. Finding Gibson’s work an extremely productive place to think through the creative acts I encountered in the field, I then came up with a renewed reading of affordances. In its original conception, affordance refers to the possibilities of action emerging from the coupling of organism-environment relations. My own reading of the concept through the critical lens of disability goes as follows: A disabled person, upon facing the limits of her environment, may begin moving, sensing and behaving in such particular ways that through these improvisations, she gets to exteriorize her bodily pain and discomforts, and express her corporeal singularities in the form of an otherwise unimaginable affordance. These “micro-activist affordances”, as I term them, go beyond the limits of what has already been actualized in the environment, and let us see the very same materiality in ways that we could not have otherwise seen or imagined. By “micro-activist affordances”, I mean how disabled individuals might transform the very materiality of the environment through the most mundane and micro of their performances. In this regard, the term describes the material agency emerging through the experiencing of a disability.

I expanded on my theorization of affordances in a postdoctoral project, again by using visual ethnography, but this time in the context of different kinds of sensory and physical disabilities. During a yearlong fieldwork, I collaborated with three differently disabled individuals living in Montreal, and filmed their differential mobilities within this highly inaccessible city. The ethnographic video that emerged out of this research compares and contrasts the ways two differently disabled individuals move through the same city, and the kinds of micro-activist affordances they come up with, highlighting how variegated disability and access needs can be, and what these variegations could mean for city planning, policy-making and design.

After having explored lived experiences of disease and disability, I shifted my focus to how ‘subjective’ experiences of disability are quantified and turned into a form of ‘objective’ knowledge in medicine. Currently, I am working as part of a fascinating collaborative ethnography project, called “the Vitality of Disease – Quality of Life in the Making” (PI Ayo Wahlberg). As the VITAL team, we are four ethnographers, exploring the current uses and manifestations of Quality of Life in various health care contexts. My own project in this collaboration focuses on Quality of Life (QoL) measures in cancer, how they are being developed and put to use. To explain it briefly, QoL measures are a series of questionnaires, scales and indices that are used to assess treatment outcomes by asking you to score, say, how easily or independently you perform your daily activities, how much pain you feel, your mood or how well you manage your social interactions. What interests me most in this knowledge practice is the day-to-day work that goes into the development of a QoL measure, and the work that the instrument itself does in various settings, including clinical trials, clinical practice, and performance assessments of healthcare programs. For this, I am currently conducting a multi-sited fieldwork in Europe, collaborating with scientists, healthcare practitioners, groups and organisations specializing on QoL instruments.

References:

Dokumaci, A. (2014) “Misfires that Matter: Habitus of the Disabled Body,” in M. Blažević and L. Feldman (Eds) Misperformance: Essays in Shifting Perspectives, Ljubljana: Maska Publishing, p. 108.

Dokumaci, A. (2016) “Mikro-aktivistische Affordanzen: Critical Disability als Methode zur Untersuchung medialer Praktiken,” in B. Ochsner and R. Stock (Eds) senseAbility: Mediale Praktiken des Sehens und Hörens. Bielefeld: Transcript, pp. 257-80.

Dokumaci, A. (2017) “Vital Affordances / Occupying Niches: An Ecological Approach to Disability and Performance,” RiDE: The Journal of Applied Theatre and Performance,

Dokumaci, A. (forthcoming) “Disability as Method: Critical Investigations of the Everyday”.