By Luke Walker
Since my diagnosis with Crohn’s disease in autumn 2015, the central challenge has been finding ways to perform invisible disability. There is much to say sociologically about a willingness to be seen, yet the semiotics of body politics and performance in favour of being seen has been most explicit in university. The purpose of this blog post, an exploration of the ways chronic illness is made visible, I approach from this idea that it has to be performed. I argue that invisible illnesses are qualitatively unique, in that they require a performance of authentic disability. Made available by predetermined forms, it is performed to either fellow students or in more formal environments and bureaucratic structures of the university. I term this dualism a ‘performance of, and for university’. Whilst there is a tension between these modalities of performing, I argue that humour has been a form for performing in formal environments, and is used to reposition the disabled body in these spaces.
Crohn’s disease belongs to a collection of inflammatory bowel diseases, involving a series of debilitating effects such as diarrhea, rectal blading, ulcerations, joint pain and fatigue. However, it can often show no visible symptoms, and like other invisible illnesses we usually go unnoticed in daily life. In the case of university, the avenue that I pursue making invisible illnesses visible is through a performance to both students and the formal environments in university spaces. When engaging with these forms, this has ramifications beyond the performance itself, by reflecting the wider politics of disability.
A performance of is a symbolic representation of the experiences of disability by a student or worker for themselves, while a performance for is a representation that is used by the university for its own purposes. For instance, a performance of chronic illness can make visible invisible illnesses in student societies, political campaigns, and the friendship networks that you develop. Whether using my story to advance and extend the political direction of a student campaign, or an exploration of illness and body politics more generally in the performance arts, I am free to make chronic illness visible on this terrain.
I find that student campaigns actively seek the student experience, because my illness is relevant. For example, campaigns are able to use my story as an example of the failures of the university to provide quality, accessible, and affordable housing to students in need. I can thus utilise my voice to provoke awareness of chronic illness generally, whilst fighting for social issues. From this perspective, a performance of is creative, because it allows me to express myself in various ways, unfettered by the politics of the university itself.
A performance for university is realised when you engage in the university structures – be it student services or participating in everyday lectures and seminars. While student services may have your best interests at heart, the performance of invisible disability must be aimed at providing sufficient evidence that you qualify as ‘disabled’, so that they can provide you with support. Thus, the purpose of performance is not to reflect the everyday realities of chronic illness, but to demonstrate and provide sufficient evidence for the authenticity of your disability. Similarly, the ability for invisible illness to be performed in seminars is limited because it has to be relevant to the aim of that seminar.
While the performance may be limited by its regulations, I have found humour to be effective for demonstrating the realities of invisible illness. For instance, I have often joked about not being able to leave the house because I need to be near a toilet at all times as an excuse for why I have not done the requires preparations for class. It has also been an attempt to normalise chronic illness and speak about the sociological dimensions of disability more generally. James Scott famously deploys the idea of everyday resistance, as part of an elaboration and critique of traditional theories of resistance. He talks of “symbolic resistance – a social space in which the definitions and performances imposed by domination do not prevail”, as a way to show that acts of resistance do not have to be conscious or planned.
In a related way, I have found myself using humour as an ‘everyday form’ through which to talk about the most uncomfortable aspects of Crohn’s disease. I have used humour in more formal university environments to first express frustration at not being seen, and to critique narrow syllabus structures. The type of syllabus I am talking about here is the failure of traditional social science to cross-examine the insights made in disability studies with that of social science, especially in regards to theories of protest, power, and resistance. Here, I have found a way to make invisible disability visible, because I abide by the forms that are deemed acceptable demonstrations in seminar environments. By using my personal experience to question the ontological parameters of various perspectives on power and resistance, I am able to simultaneously make people aware of chronic illnesses whilst maintaining a commitment to the class discussion. There are other ways in which making the invisible visible can be pursued, but I have chosen humour as a gateway to do this.
Luke Walker is an anthropology and international development undergraduate student at The University of Sussex. While on exchange at the University of Copenhagen, he is writing about how his experiences of living with Crohn’s disease speak to themes in the social sciences.