By Philippa Wiseman
My impetus to embark upon PhD research was very much bound up with my own experiences as a disabled person. As a disabled person I saw it as a privilege to attend mainstream school, I went to University, and for the most part felt included. I thought about whether this level of inclusion was unique to my experience or whether disabled people of my generation had achieved greater inclusion and participation as a result of the revolutionary achievements made by older generations of disabled people in securing anti-discrimination and equality legislation. I wanted, initially, to focus on what rights meant to young disabled people and in what ways they felt most or least included. The aim of my PhD study was to look at how young disabled people feel about their rights in their everyday lives and over time this grew to look at citizenship as an everyday embodied experience. This entry will try to give a brief outline of my PhD research and some of the key research findings.
The body is the fleshy substance of citizenship. However, the Sociology of the Body and Citizenship Studies remain two seemingly unrelated paradigms with limited intersection. Citizenship has traditionally been associated with the ‘public’ sphere and the body with the ‘private’ sphere resulting in the distancing of the body from citizenship. This demarcation has resulted in the exclusion of particular groups of people from being able to achieve full citizenship based on corporeal difference (Lister 2003).
I found that Citizenship studies was heavily focused on more traditional notions of what citizenship means and typically founded on T.H Marshall’s (1950) models of citizenship. I began to see that citizenship discourse within Disability Studies mirrored the model of citizenship that posited the citizen firmly within the ‘public’ sphere, making disability a ‘public’ matter and impairment, or the body, a ‘private’ one. Disability Studies routinely reproduced the kind of dualistic thinking that has led to inequality and exclusion (Hughes 2012). I argued that the separation of the ‘public’ and ‘private’ spheres perpetuates the marginalisation of disabled people. Utilising and building upon the concept of embodied citizenship (Bacci & Beasley 2000, 2002) offers a useful lens through which to view the experiences of disabled young people’s everyday lives and to bring into focus the comingling of the ‘private’ and public’ spheres. Further, through exploring the feminist dictum ‘the personal is political’ I aimed to understand the ways in which seemingly ‘private’ experiences were political ones.
Using data gathered from interviews with 18 disabled young people, with physical impairments, in Scotland, my research explored the ways in which disabled young people negotiate their everyday lives. The data found that participants’ inclusion and participation in the ‘public’ sphere were explicitly bound to the ‘private’ sphere and that they experiences were always already embodied (Csordas 1994, see also Merleau-Ponty 1969). Participants’ greatest feelings of exclusion were felt around everyday experiences often associated with the ‘private’ sphere such as intimate relationships, sex and toileting, for example. This left some participants feeling insecure and uncertain about whether they were capable of having a sexual relationship based on popular and educational norms around penetrative heteronormative presentations of sex. Exclusion from these areas of social life resulted in negative impacts for participants’ sense of self and psycho-emotional wellbeing.
The everyday negotiation of feelings of ‘sameness’ and ‘difference’ were found to be important in understanding how participants felt about themselves in relation to their everyday citizenship. Families and friends were instrumental in promoting feelings of ‘sameness’ whilst feelings of ‘difference’ emerged in relation to inaccessible toilets, sexual health clinics, clothes shops and through negative interactions with non-disabled others. Citizenship and inclusion were invalidated where participants were made to feel ‘out of place’ because of corporeal difference. For example, Ruby (26) talked about her feelings towards inaccessible toilets:
R: If you’re going to a bar…the bar may be on the ground floor but the toilets might be downstairs. Or sometimes if they do have a disabled toilet it will be full of all the cleaning supplies and stuff and I get so frustrated sometimes. Obviously you’ll know yourself but I hate it when you have to go to the disabled toilet and it says that you have to go and get a key and you have to go somewhere miles away to get the key and then go back…
Ruby’s narrative forms just one example of the intersection between disability, the body and citizenship. Similarly participants, and particularly disabled women, spoke candidly about feeling excluded from information around pregnancy and parenting. The lack of information, visibility and recognition (Honneth 1995, see also Shakespeare 2000) of disabled women having children led to the internalisation of this invisibility resulting in many of the women feeling that they were not capable of having children or, in some cases, that they should not have children (Thomas 1999).
In sum, the analysis of participants’ experiences of everyday citizenship revealed a complex interaction between embodied sense of self and inclusion and exclusion. My PhD research concluded that a more holistic representation and understanding of disabled people’s everyday citizenship can be achieved through the reconciliation of the ‘public’ and ‘private’ spheres. The frontiers of disabled people’s citizenship exist in those seemingly ‘private’ aspects of everyday life and are intrinsically bound to social and political relations.
Bacci, C. & Beasley, C. (2000) ‘Citizen Bodies: embodying citizens – a feminist analysis’, International Feminist Journal of Politics, 2: 3, 337-358
Bacci, C. & Beasley, C. (2002) Citizen bodies: is embodied citizenship a contradiction in terms? Critical Social Policy 2002 22: 324
Csordas, T (1994) Embodiment and Experience: the existential ground of culture and self (Cambridge University Press, Cambridge)
Honneth A (1995) The Struggle for Recognition: the moral grammar of social conflicts (Cambridge, Polity)
Hughes, B. (2012) ‘Fear, pity and disgust: emotions in the non-disabled imaginary’ In Watson, N., Roulstone,A., & Thomas, C. (ed.) Routledge Handbook of Disability Studies (Routledge)
Lister, R. (2003) Citizenship: Feminist Perspectives (Basingstoke, Palgrave Macmillan)
Merleau- Ponty, M. (1962) Phenomenology of Perception (Routledge Classics, London)
Shakespeare, T. (2000) Disabled Sexuality: Towards Rights and Recognition. Sexuality and Disability, Vol 18 No. 3, 2000
Thomas, C (1999) Female Forms: Experiencing and Understanding Disability (Open University Press, Buckingham)
Wiseman, P (2014) Reconciling the ‘Private and ‘Public’: Disabled Young People’s Experiences of Everyday Embodied Citizenship. Thesis submitted to the University of Glasgow.
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Phillippa Wiseman has just passed her PhD in Sociology looking at the everyday embodied citizenship of disabled young people in Scotland. She did her PhD in the Strathclyde Centre for Disability Research (SCDR) in the Sociology subject area. Phillippa has also worked as a Research Associate in the SCDR and the Institute of Health and Wellbeing at the University of Glasgow. She is interested in the intersection between the body, disability and citizenship and future research interests include embodiment and toilets as a site of inequality. You can reach Phillippa via email at email@example.com or on Twitter at @PhillyWiseman