Current research into disability, and the problems raised for those with a disability are centring more closely upon the individualised accounts of those involved. Such an approach realigns the personalised experience as valid and important. Medical and social models have been utilised at various points in research methodology as a means of explicating the issues disability studies can raise. However, these modes of knowledge formation have tended to become “ossified and exaggerated into a set of crude dichotomies” (Shakespeare 2006, p13). Tom Shakespeare does not completely dismiss the social model which was for some an improvement that enabled disability campaigners to adopt new terms of reference, but he advocates flexibility and giving individuals the right to define themselves rather than having it done for them. As he observes, “disability identity politics has been very powerful, but also contradictory… This may derive from the heterogeneity of disabled people’s experience” (Shakespeare 2006, p76). In avoiding any stance that is too narrow, some critical thinkers have sought to open up debate and utilise other theories to inform disability studies and policy suggestions.
Feminist thought is recognised by some as having validity due to the similar nature of women’s oppression within a paternalistic culture that may ostensibly practice equal rights but still maintains an inequality of power through a variety of means that remain invisible due to their uncontested nature and the dominance of a normalising process in society. Such theorising observes that “the body… is a medium of culture” (Bordo 1989, p13). Ethnography, as a method of social research is instrumental in identifying the lived experiences of those with a disability as it observes the real life problems of individuals from within their particular set of circumstances. Ethnography can be informed by different approaches but collectively it “is a special kind of social inquiry… in which… members create and maintain a sense of… intelligibility” (Ten Have 2004, p14). This privileging of the individual experience of exclusions and social barriers recognises that a greater expression of emotion and personal narrative is needed in the social sciences. It helps to “give room to the… struggles of people whose illusions of prediction and control have been interrupted by illness” (Ellis & Bocher quoted in Gwyn 2003, p222). The study of personal accounts and lived experiences can facilitate a “narrative… as an ideal way of forging the kind of borderline writing poised between literature and ethnography” (Gwyn 2003, p222). In practising an ethnographic study of disability, the production of research that is based in the “everyday experiences of disabled people… deconstructs ableist ideologies” (Erevelles 2002, p8). Below, the experiences of one woman with a degenerative disability are observed using informal interviews and open ended conversation to evoke the everyday struggle for independence in a society that can treat disability as a deviation from the norm.
Alice (not real name), who has mobility problems due to multiple sclerosis faces the daily problems of living with her condition; in a recent consultation with her specialist, she describes how she tried to explain to him that “every step felt as though I was wading through treacle whilst standing on jelly fish”. But, “I felt as though he wasn’t listening and just wanted me out of the room as quickly as possible”. She has consistently found consultations to be brief and hurried and her support has mainly come from meeting with other MS sufferers. A sense of being misunderstood when in public also occurs, as she is relatively young and does not look obviously disabled; passers by can become frustrated with her slow gait. Recently she has started to use a walking stick, “I don’t really need one, but it makes me feel less self-conscious”; Alice felt that using one helped explain to others why she was walking slowly. She recounted an incident where she parked in a disabled space and then walked (without her stick) to the nearby shop. “Some people in a car beeped at me and pointed to the disabled parking sign, they thought I wasn’t disabled”. Thus, constructions of disability are diverse and understood differently by individuals, it was after this encounter that Alice started to use her stick more often. She finds the problems of coping in public difficult and the attitude of many unhelpful in a social realm where the perfect body is idealised.
The defining of one’s condition and sense of self should be in the hands of the individual rather than through other’s assumptions about them and an ethnography that uncovers the complexity of living with disability can enable and inform.
“With the evolution of an increasingly… visual culture we are all, to an extent, invited to be… participant observers in a mass mediated ethnographic exercise”. (Coupland & Gwyn 2003, pp3-4)
If this observation seeks out abnormality then it denies the selfhood of the individual with a disability, however, it can be turned into an advantage if it makes one of its tasks a reversal of “the hegemony of the normal” (Davis 1997, p26) and raises awareness of being differently abled. Alice’s experience of having some mobility but also periods of weakness gives her an ambivalent status, she may appear well but the sense of muscle fatigue and discomfort which slow down her pace can place her at a disadvantage. She attempted to keep working as a teacher for a while but found this to be “miserable, no one was prepared to give me enough extra time to get around the school, and I was expected to stay late for meetings, I left before they kicked me out”. She felt the loss of the social aspects of working but ultimately found the intolerance from her work colleagues depressing, isolating and too hard to tolerate. It has been her experience of being different and regarded as weak and too ill to be in public that has most upset her, despite her own desire to remain a social being. “I feel like the only people that have time for me are the MS people I meet up with each week, they know what I’m going through and help me know I’m not going mad. It seems like everybody else is too busy to care. I had no idea I could feel so lonely sometimes but I know it’s not my fault it’s just the way life is”.
The role of research that promotes the rights of those with a disability has at times been complex, giving conflicting accounts of their intent and beliefs, in part this has been due to those doing the representing who may have chosen their own specific battles to fight. The act of defining disability is problematic as the experience of facing obstacles differs from person to person according to their own particular set of issues, and according to the values of the culture and society they live in. For Alice, the problems of daily life are multiple, supermarkets are daunting as people rush around them “I just can’t move fast enough or get out of the way in time”. Roads are hard to cross and Pelican crossings do not always give her enough time to cross, again, she has found using a stick gives people a visual cue as to her slowness. “I feel better going out now, it seems that people are kinder to me if I use the stick which is a shame but I guess it makes it easier for people to understand why I’m slow”. Alice felt that shops and disabled parking could be improved and that this would make her life easier, especially if “there where more chairs and the parking was closer to the door”, however, the built environment continues to place obstacles in the way of easy mobility.
Because a disabled person can walk with a stick they might be classed as having minor mobility problems and fail to be awarded adequate benefits, “poverty is the single most disabling social circumstance for people with disabilities” (Wendell 1996, p41). Lack of access to enough financial and material support can inhibit an individual’s participation in society leaving them isolated and further reducing the amount of people with disabilities who are able to negotiate their world with anything close to ease. Both Alice and her husband have disabilities, and are raising a teenage son between them, “we want to give him as ordinary a life as possible, but it’s hard when we both have to rest so much, I feel like an old woman with a young son”. She recognises her dependence on financial support as well as help from friends and family in keeping the house clean and tidy. “I worry because people have been so kind to us and we depend on it so much; what if we didn’t have all this help, I might lose my son”. Alice’s fears reveal her sense of vulnerability and this suggests a society in which weakness is not tolerated or allowed for, “disability is not simply a physical phenomenon but also… a sociocultural one” (Lupton & Seymour 2003, p248).
In light of this it is no wonder that disability becomes a much discussed and argued subject, due to problems created by unfair and unequal access to resources which result in embedding the social barriers inherent in society. Power resides sometimes silently and rests with those not classed as having a disability, giving them what some might recognise as the privilege to define the axis of power; “it is not the neutral, universal position… rather it is a category of people whose power and cultural capital keep them at the center” (Linton 1998, p32). For those with a disability, society can seem to be deeply frustrating and inhibiting, the built environment can be unhelpful in aiding mobility and attitudes from a variety of sources may further impede access to events and situations others take for granted. Full integration into society seems remote as yet for some individuals with a disability, so long as society tends towards viewing disability as an error and mishap of nature or circumstance. To view those with a disability as ‘other’ than mainstream society will only reinforce this barrier, when we ‘other’ people, we “group them together as the objects of our experience instead of regarding them as fellow subjects” (Wendell 1997, p271). For those facing unemployment, meagre benefits and isolation, life can be difficult, particularly if society as an ideal continues to model itself on “some universal, perhaps biologically or medically describable paradigm of human physical ability” (Wendell 1997, p263). Alice has continued as much as possible to participate in society, visiting town and taking part in her son’s social life, due to the problems of her mobility all this needs to be done with forethought. “I plan all my trips and need to rest for hours and do nothing when I get back”, with the support of friends and family she is able to remain positive and engaged but the reality for many is less optimistic, particularly if they lack the network of help and support Alice has. The place for a progressive means of disseminating understandings of disability may lie with ethnographies that express multiple ways of living, “in such a context… disability will be regarded as just another difference” (Erevelles 2002, p22). This attitude would make life easier for Alice and others with a disability in leading a more inclusive social life and sharing in an equal distribution of social and cultural benefits.