RETHINKING CHRONIC ILLNESS AND ETHNOGRAPHY
Since my diagnosis with Crohn’s disease in 2015, I have started to re-think the relationship between chronic illness, disability, and protest in a series of blogs. Recently however, I find myself akin to the same existential crisis occupied by most anthropologists; whether my interpretation of what is a still misunderstood illness holds any truth. The motivation for my pursuing this as an anthropological area of interest, is because it offered me the only way I know how to make sense of the nuances and abstract realities that I am faced with every day, and am still making sense of. I have argued that because people with invisible illnesses such as my own oscillate between moments of visibility and invisibility, it offers the body an opportunity to perform modes of resistance.
The kind of resistance I am invoking here is mainly symbolic, and as of yet to be realised materially as a focal node of social movements. Theoretically, it is a combination of the nuances of the subtle unconscious everyday forms of resistance that James Scott talks about in ‘Weapons of the weak’, and the conscious reconfiguration of unperforming the hegemonic body identities that Judith Butler talks about in ‘Undoing Gender’. Persons with inflammatory bowel disease (IBD) have emphasised their physical heterogeneity to physically functional bodies by visually altering the bodies form through digitised techniques. For example, my friend Adam took some pictures of me and together we used different photographic designs and methods to visually highlight in red the pain I feel in my stomach. There is also an increase in featuring toilets and IBD in the performance arts, such as the play ‘Gutted’, where invisible illnesses are performed. People affected with this kind of invisible illnesses also wish to downplay their difference by reworking the environment that structures their difference. For example, the ‘accessible toilet campaigns’ are challenging the unique status that qualifies what disability is and isn’t. These campaigns reclaim the right to use accessible toilets, and are specifically about having access as a disabled person to the comforts of a private bathroom. A major achievement of these campaigns is that it has replaced the disability symbol of someone in a wheelchair to including the figure of a man and women beside them with the caption ‘not all disabilities are visible’. I myself find that I can blend in with socially functional bodies without being sentenced to treatment as physically less able, as I have written for the Sociological Review.
This performance however is negotiated between these states of visibility and the degree to which the body has control over sustaining these states. I now understand that the extent of this realisation requires interrogating the interpolation between the physical ability to perform resistance, a willingness to resist, and its functional sustainability. In my blogs, I have weaved these insights by rethinking my own experiences with Crohn’s disease. But I would like to take the moment for reflexivity, and to question whether such an interrogation is even possible with my chosen method – autoethnography. This comes from an uneasy admission that I have, up until recently, been denying; that I do not always feel disabled.
To qualify for disability is itself an interesting avenue one could explore anthropologically. It assumes that disability is itself a category to be fought for and over. But it is not to society that I have being trying to prove my illness too, it is my fellow sufferers. I often feel like a fraud when I read about other people’s stories and the horrific battles they have endlessly endured. This disconnection from other people with IBD, has been crafted by my only access to other sufferers: social media. These virtual sites and support groups function to allow sufferers to share and exchange stories, look for support and advice, and to participate in awareness campaigns. While many of these groups are private and off limits to the public eye, the main Facebook sites that are accessible is ‘Crohn’s and Colitis UK’ and ‘The Toilet me & IBD’. Two themes stand out in these virtual fora: the consistency of images depicting graphic recoveries from surgery, and the stories about the different cocktails of medication and other techniques that contour the body, such as ‘how to change a colostomy bag’. I myself have no experiences with this. Rather, my understanding has been entirely shaped by the stories that these anonymous faces share online. I feel fake and alienated from my condition, because I have been unable to experience what I have identified to be the real Crohn’s disease. This narrative of what constitutes this illness has caused me to recast this form of disability into myself and has become the source of my own anxieties. After all, what right do I have to complain if I have yet to experience what Crohn’s disease really does. Does visibility require conformity to certain ways of behaving and practising the disabled body? If so, maybe it is not so free to resist as I once imagined.
My understanding of ethnography has been formed through the perspectives outlined in Tim Ingold’s (2017) essay. In this, he argues that ethnography is not a means to anthropological ends. The opening line reads; “Ethnography aims to describe life as it is lived and experienced, by a people, somewhere, sometime” (Ingold: 2017: 21), shortly followed by the contrast with anthropology as “an inquiry into the conditions and possibilities of human life in the world” (ibid: 21). What Ingold is trying to indicate is that if we are to avoid returning to colonial legacies, we must study with people. I believe this to be a commitment to a form of practising anthropology that is able to enrich the discipline in its endeavour to understand the many conditions and possibilities of human life. In maintaining loyalty to this form, I had chosen autoethnography as my way to study with people. My encounter with autoethnography had been given to me after a fascinating two day ‘Voicing Experience: The 4th British Conference of Autoethnography’ at Sussex university. I had thought that making myself the object of my research would avoid making studies of people because it does not speak on behalf of others, but directly about my own illness.
Yet, the feeling of disconnection and alienation from other sufferers brought me to re-visit the objectives of my writings, as I am unable to relate to the many experiences other people have of the illness. I am also deliberately steering the focus of my discussions – and of my illness – to a consideration of theory, particularly towards a theorisation of the disabled body. I have questioned if my commitment to theory is a way to unintentionally distance myself from IBD sufferers. I am anxious that they will find my theoretical arguments too distant from their reality. Curious that this seemingly esoteric agenda that I have managed to craft, I started to question whether autoethnography really gave my work empirical substance and theoretical backbone. In a piece I recently wrote for ‘Kula Kula’ – a student anthropology journal at the University of Bergen – I argue that autoethnography is able to get close to the lived reality of chronic illness without falling into an empirical over identification. Yet, I still dwell over this, and continue to ask myself whether other ethnographic forms are more equipped to deal with these issues. It’s an ongoing project to say the least.
Putting this debate to the side for a moment, I recall a turning point in my story. Partly because of the aforementioned anxieties stated above, but also for a longing for connection, I began to reach out. I have seen many people on social media give each other support and advice, but I have always steered clear of being involved in this. I had always wanted to talk to someone, but I never knew what to say. Like I’ve said, I feel like I am falsely wearing the ‘chronic illness’ badge at times. But the need to find solace in my condition for what it was for me because too much so despite my reservations, I reached out anyway. I contacted a well-known face on social media, Chris through Facebook. Chris suffers from Ulcerative Colitis [the other main form of IBD], and is a key figure in the plight to making invisible illnesses, visible. During our brief conversations, we talked about our conditions respectively and commented on the use of social media as a platform for awareness. Chris explained that his frequent use of social media began when he started working with the Colostomy Association Charity, where he began pursuing the production of educational videos. However, after an illness in May 2016, and realising the seriousness of this life-threatening illness, social media became a way to also understand his own illness. There is a sense of passion and commitment that I could gather from the way Chris spoke that resonated with me for days after. I had found a connection with a fellow sufferer. Someone who had also found a way to make sense of his illness. What stuck with me days after this conversation, was a feeling that I was somehow part of the family. It had taken away some of my anxieties, and has allowed me to continue rethinking the anthropological parameters of a still misunderstood illness. Invisible illness and the disabled body is a much more complex phenomenon and, as this discipline teaches, it is important to consider how these things can be interpreted and experienced differently.