Sociology of Health & Illness Vol. 29 No. 1 2007 ISSN 01419889, pp. 6681 doi: 10.1111/j.1467-9566.2007.00518.

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Pamela The O 1 medical 29Blackwell and linear riginal Fisher and Ltd Goodley 0141-9889of HealthDanmodel Sociology Publishing& Ltd/Editorial Board SHIL UK PublishingIllness of disability 2006 Oxford, Article Blackwell

The linear medical model of disability: mothers of disabled babies resist with counter-narratives Pamela Fisher and Dan Goodley
Department of Educational Studies, School of Education, University of Shefeld

Abstract

This paper draws on the narratives of parents of disabled babies in order to conceptualise notions of enabling care. This analysis emerges from the Shefeld site of an ESRC research project Parents, Professionals and Disabled Babies: Identifying Enabling Care, which brings together the Universities of Shefeld and Newcastle-upon-Tyne. The linear heroic narrative is a dominant theme within Western culture. It is competitive and individualistic and tends to be futureorientated in that actions conducted in the present are evaluated according to later outcomes. This linear narrative places much store on modernist interventions such as medicine, and tends to uphold professional boundaries and hierarchies. In the lifeworlds of parents, usually mothers, of disabled babies, this narrative can reinforce disempowering interpretations of disability and impairment. On the basis of 25 in-depth interviews, accompanying stories and ethnographic data, this paper suggests that parents are developing counternarratives which, at times, resist linear life models and free parents to enjoy their children as they are. If life is perceived as an open book rather than as a concluding chapter, parents are able to develop stories that are neither linear nor heroic but present and becoming.

Keywords: disability, narratives, counter-narratives, resistance, enabling care

Introduction The linear life narrative constitutes a dominant trope within Western culture (Ezzy 2000). Its roots lie in the Enlightenment programme of the late eighteenth century and therefore it is closely connected to the birth of modernism (Coulby and Jones 1996). Both Enlightenment thinking and modernist traditions promoted the view that history could be regarded in terms of cumulative, linear progression, achieved through the application of reason, and the exercise of science and of expert knowledge. Actions in the present came to be assessed in terms of the efciency of means in achieving ends (Siegel 1988: 130) and progress was to be achieved by rugged individuals who sought certainty and strove to become architects of their own futures (Dudley-Marling 2004: 489). Notions of individualism and progress, combined with a conviction that science was the key to human betterment and would provide a total explanation, gave rise to life being conceptualised in increasingly linear terms (Ezzy 2000). Within this thinking, the convergence of expert opinion came to be considered desirable as it was held that this would lead to the establishment of rational consensus around the truth (Parker 1997).
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Linear modernist medical discourses, which gave rise to the bio-medical model of disability in the 19th and 20th centuries (Bury 2001) have been primarily based around rehabilitation and restitution (Gough 2005). With experts protected by the establishment of professional boundaries in their quest for rational consensus, narratives that did not subscribe to linearity, progress, scientism (particularly in the interests of restoring normality) have typically been discouraged in the delivery of health care. The role of patients own narratives has often tended to be reduced to a process of eliciting information regarding specic symptoms of disease or of abnormality (see McKeever and Miller 2004, McLaughlin 2005). The task of the doctor has been interpreted as linking these pieces of information into a denitive diagnosis that was attributed to specic biological causes (Bury 2001). A growing preoccupation with normality meant that illness and disability became separated from everyday life and were constructed as forms of individual pathology. In this process the medical profession came to exert almost complete jurisdiction over the denitions of normality and abnormality (Lawrence 1994). This constituted part of the development whereby key aspects of everyday life were lifted into professional spheres under the conditions of modernity (Giddens 1991). Mothers and children inhabit these professional spheres. In this paper we use the term mother in place of the gender neutral term parent that tends to obscure the fact that it is overwhelmingly, although not always, mothers who are the primary carers of children, and this is more the case when the children are disabled (see Read 2000, Traustadottir 1991, 1995). We suspect that mothers and children are subjected to frameworks of meaningmaking which make use of the linear narrative and encourage them to seek some form of normality. Mother and child face struggles; anticipate key developmental stages; work together to overcome decits; seek some form of normality. Versions of childhood are ascribed; developmental stages are used and assigned and clearly dened markers of normality are constructed against which children are judged (Burman 1994). Our research attends to some of the implications of engaging with such meaning-making.

Methodology and framing analysis Through focusing on the perspectives of mothers with disabled babies and young children, this paper contributes to recent impulses to question professional hierarchies and boundaries, including those in the medical sphere, in late-modern cultures. It also hopes to add to a plethora of research into disability and family that aims to unpick the disabling practices and enabling becomings that affect mothers (e.g. Read 1991, 2000, Traustadottir 1991). This study is primarily based on eldwork conducted in 2004 and 2005 by researchers from the University of Shefeld for an ESRC research project Parents, Professionals and Babies with Special Care Needs: Identifying Enabling Care (http://www.shef.ac.uk/inclusive-education/ disabledbabies/), which has been undertaken collaboratively with the University of Shefeld and Newcastle-upon-Tyne. The research has a number of aims: to identify enabling principles of care, primarily from the perspective of parents of disabled babies alongside a consideration of professional perspectives; to critically examine professional-client relationships in terms of the ways in which parents are empowered to take an active role in the care of their children; to investigate how meanings of impairment and disability are negotiated and constructed, and to consider how these meanings impact on the provision of care,
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perceptions of the disabled baby and the resultant understanding of parenting and professional practice. To date, in-depth interviews have been conducted with 25 families with babies and young children with special care needs. The families have been divided into two groups. The rst group of participants provide retrospective accounts of their experiences, including those of medical and social care services, since the birth of their child. The second group involves families who have children up to two-and-a-half years of age at the start of the project. These participants have a long-term involvement in the research project and provide a longitudinal perspective through participating in a number of interviews conducted over a period of up to 18 months. There is also a strong ethnographic component to the methodology, involving: (i) the observation of mothers, children and professionals in a variety of clinical, social services and social-service and home settings and (ii) immersion within the wider support networks of parents. Finally, focus groups have been conducted to include the perspectives of a range of medical and social care professionals working with the families. Based on an epistemology of interpretation, the starting point of this study is that there is a . . . hermeneutic relationship between experience and story, in which experience elicits the story, and the story articulates and thereby modies experience. (Widdershoven 1993: 9). While gathering the data for the study, we encouraged the participants to go beyond a merely descriptive approach, and to place their own interpretation on events and situations. The intention was to excavate the experiences and perspectives of a group of people who might otherwise have remained hidden. Insofar as it is based on a commitment to conduct research from below, the study owed much to the spirit of feminist oral historians (Anderson and Jack 1991, Oakley 1993) and to critical or postmodern narrative researchers (for example, Bertaux 1981, Thompson 1988, Goodley et al. 2004). Narrative analysis tends to be intertwined with a consideration of the temporal nature of peoples lifeworlds and self-understandings (Mattingly 1994, Davies 1997, Ezzy 2000). We have therefore drawn on Daviess (1997: 567) interpretation of time . . . as the platform from which we live our lives and the means by which control over its course can be exercised. The linear narrative, with its roots in the Enlightenment and modernism, is associated with a teleological view that encourages people to seek out expert help to ensure favourable outcomes in the future. In this paper, we argue that mothers are challenging the linear narrative through the construction of a narrative of challenge that is also future-orientated, and also through the construction of a temporal worldview, which abandons linearity in favour of what we have termed the philosophy of the present and becoming. Within this narrative, linearity yields to an appreciation of the present, and mothers enjoy their children whilst accommodating uncertainty with a sense of hopefulness that enables them to place less value on diagnosis and labels. This insight inuenced our engagement with the research participants and encouraged us to be less concerned that the interviews should address concrete hopes and fears whilst making us more interested in gaining a more intricate and enriched understanding of the present. We found that, for many mothers, the linear narrative that aims for the certainty of diagnosis was experienced as restrictive and liable to block the development of alternative thinking as well as the imagining of more empowering ways of being.

Making sense of stories: nodes Each of the parents, mainly mothers, stories are, or will be written up into narratives. These include life stories, biographies, vignettes, composite narratives and ethnographic
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tales (see Goodley et al. 2004). The stories are not left there. Our aim is to look, with our narrators, into the meanings and practices that are alluded to and to oppose any conservative readings of their accounts that could potentially be offered by other readers (BertauxWiame 1981). We aim, therefore, to think of ways of understanding what Bertaux (1981) terms the wider socio-cultural and historical horizons on which stories are often founded. Such approaches have the potential to develop new ways of conceptualising disability and to expose pregiven understandings in ways that leave them open to other ways of knowing and being. In engaging with our research participants, we make it clear that we are working from a social model of disability and that our study seeks to identify empowering understandings and discourses around disability. Having stated this, we leave the content and the direction of the interview largely in the hands of the interviewee. The approach is conversational, and our prompts arise as we respond spontaneously to our interviewees accounts. Nevertheless, we view ourselves as co-producing such accounts although we nd it difcult to gauge the extent of our involvement in their production. Given the dominance of medicalised models of disability, we do not consider our open espousal of the social model of disability problematic, although we acknowledge that it may open up more possibilities for our research participants to nd the space to conceptualise alternatives. We see the research participants as not simply uid and reactive, but also as architects of their own identity constructions, which may or may not follow dominating societally-formed plots, scripts and stories. Our intention is not to bring research participants to new understandings, but we note that in-depth interviews, conducted according to feminist approaches, can provide the opportunity for research participants reexively to explore their understandings in new ways (see Birch and Miller 2000). We acknowledge that this raises certain ethical challenges. While the interview may, as Birch and Miller (2000) point out, provide the opportunity for a therapeutic encounter in which the research participants may reconstruct painful life events into more positive and enabling narratives, this means that the boundaries between research and therapy are inevitably blurred. Whilst respecting issues of anonymity and condentiality, we have been mindful of our ethical responsibilities which arise out of this situation. We have, for instance, helped some research participants to develop informal and supportive networks by enabling them to contact people in similar circumstances, if all parties have expressed a desire to do so. Mothers are particularly interested in meeting other people whose children have the same condition. We have also continued to provide support by making ourselves accessible by email and through telephone contact. We also feel that our ethnographic work has been helpful to many of the research participants. In some cases, mothers have told us that they consider that their children have enjoyed a higher level of care, in particular by being referred more rapidly for required interventions, as a result of being accompanied to appointments by a researcher. Often, though, mothers simply comment that they feel supported by the presence of a researcher when they attend medical appointments with their children. When presented with our narratives, we have become increasingly aware that our research aims overlap, particularly when we consider the meanings that underpin discourses of enabling care, empowered parents and meanings of impairment and disability. Parental stories and ethnographic encounters have therefore been questioned by us through a process of developing what we call analytical nodes. We are encouraged to consider an occasion, a disclosure, an observation and a commentary as practices that may well reect underpinning meanings associated with parenting a disabled child. Thus, analysis starts early, proactively responding to emergent issues and is a relational process in which we debate theoretical possibilities. Analytical nodes are often provisional thoughts, bringing together data and literature, that:
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construct data collection and analysis as one integrated process, thereby breaking down barriers between eldwork and analysis and exposing the dialectics of data and theory; this allows us to consider the possibilities for mapping our ethnographic and interview material into possible/provisional points of analysis; reveal the complexities of the cultures we are investigating; display the inter-connected nature of people within these cultures; identify elements of the culture to (re) investigate where to do ethnography next; impose theory and/or foreground data; crucially, raise further questions.

In this paper, we tentatively present three recurring, inter-linked and, at times, contradictory nodes or narratives within the mothers stories. We have called these the linear narrative, the narrative of challenge (that bears certain similarities to the narrative of quest, described by Frank (1995: 115) in relation to people living with long-term illnesses), and, borrowing from Daviess (1997) and Ezzys (2000) analysis and the work of Deleuze and Guattari (1987), the philosophy of the present and becoming. We argue that the linear narrative is more closely associated with the individual model of disability: of adjustment, (delayed) development and individual growth (see Oliver 1996). In contrast, and sharing aims with many proponents of social perspectives on disability (e.g. Barnes and Mercer 1997), the narrative of challenge is helpful in developing parents agency to resist normative and oppressive interpretations of disability. The nal narrative, the philosophy of the present and becoming, permits mothers to embrace uncertainty with a sense of optimism and hopefulness. This nal narrative is of particular interest. We are not arguing that the mothers embody a particular narrative. Instead, we conceive human beings as storytellers (homo narrans) and view life as story put into practice. People are therefore seen as complex texts, with many a twist and turn.

Identifying narratives Mothers in search of linear narratives Whenever stories are framed within the linear narrative, mothers often construct their childs disability within a medical framework which identies a separation between the normal and the pathological. This is often accompanied by a tendency to place a high value on diagnosis, as this is held as being an important factor in deciding future development and progression (see Goodley and Tregaskis forthcoming). As Varenne and McDermott (1999: 11) have observed, there is often a tendency to assume that disability is somehow hardwired in the body of the child. Hopes are often placed in medical expertise as the linear life model is associated with concrete hope (see Ezzy 2000), that is hope for recovery, for a return to normality. Linear narratives are therefore premised on what we term a modernist worldview and its belief in progress and science. The fact that all-explaining theories or transcendental signiers are rarely adequate to account for the complexities of human conditions tends to be overlooked (Eagleton 1996). Rachel (all the names of the research participants and their children have been anonymised), for instance, was desperate to have a diagnosis that would put a name to her babys condition. She said that the feeling of not knowing was one of the hardest things to bear. Above all she felt she had to know what her childs prognosis would be and what the future would hold. She explained that . . . you only get the right information if you ask the right questions but most mothers are inexperienced and dont know the right questions to
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ask. At the time of her sons birth and in the following months, Rachel had a sense that she was being fobbed off by professionals who, she felt, had expert knowledge that they were reluctant to share with her. Gradually, over months and numerous consultations, the diagnosis of Charge, a very rare syndrome, was made. Rachels reaction was highly ambivalent in that she described it as . . . a relief to know but also like the nal nail in the cofn. Rachels hopes for normality and for a certain type of future for her son were dashed by the diagnosis. While her efforts until that point had been xed on obtaining a diagnosis, when she achieved this she found that the path she had hoped her sons life would follow seemed blocked forever. The realisation that the desired outcome is unobtainable can, for some mothers, lead to a form of hopelessness and self-imposed isolation. Social interaction is sometimes avoided, since it may reinforce negative self-concepts. Rebecca, the mother of a baby with severe epilepsy and other complex needs, explained her difculties in coming to terms with a child who did not conform to conventional ideals: It really does detach you from life. [ . . . ] I wanted to take my baby out and show him off to the world. But, as much as he is absolutely beautiful, hes still got problems and hes not normal. It probably sounds totally self-centred. I wanted to take him to the supermarket and wanted him to be doing normal baby things. [ . . . ] But you feel very conscious about the way he is. [ . . . ] I cant stand to think of people thinking, whats up with that child? [ . . . ] Some people arent bothered about disability. As a child, I was scared of children with disabilities. If one of those special buses came past when I was little Id be frightened. Theres this whole stigma, isnt there? and then because Thomas is as he is, it makes me feel like a freak. [ . . . ] I know where people are coming from because I think like that myself. Thats not very good is it? Such feelings reect parental responses to the construction of disabled people as invalidated strangers (Hughes 2002). On the other hand, mothers may respond to disappointment by constructing alternative linear narratives aimed at achieving more modest targets than those set for the normal child. A great deal of faith is invested in interventions that will help their children to achieve their potential. If a child of pre-nursery age is assessed and monitored according to the targets set out on his or her educational plan, this is perceived as enabling and supportive. Consistent with a linear narrative worldview, mothers may invest a huge amount of effort in accessing services aimed at addressing what they perceive as physical, emotional, intellectual and behavioural decits and, while progress is often achieved, the failures and struggles involved in reaching the identied targets may undermine both mothers and childrens self-esteem. As Nunkoosing (2000: 53) puts it, The socially constructed self-esteem is then measured and new procedures to improve self-esteem postulated. A worldview limited to a linear narrative risks creating high-pressure situations in which never-ending professional assessments lead to children and mothers constantly striving towards superhuman criteria (Goodley et al. 2004: 187). The challenging parent While the narrative of challenge is also linear in that it is future-orientated and tends to identify the way forward, it nevertheless diverts from a modernist emphasis on the certainty provided by explanations of individual pathology in favour of a poststructuralist approach that locates disability in the context of complex social interactions and practices (Gergen 1990, Laclau and Mouffe 1985: 127, Corker and Shakespeare 2001). From this perspective, denitions and meanings are always open to be contested and are never
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permanently xed. Constructing meanings within a narrative of challenge, mothers tend to question conventional notions of normality and are less likely to locate disability in a pathological category. Biological notions of disability tend to be replaced by ones that are more emergent in character and depend on social circumstances and societal reaction. Such an approach is in line with what has been termed social model thinking developed by disability (and parent) activist organisations (see Murray and Penman 1996, Murray 2003, Goodley and Tregaskis forthcoming). As would be expected, the narrative of challenge is associated with less deferential views towards professional expertise. In the extract below, Olivia objects to what she perceives as the over-use of the term normal: PF: Olivia: You said you hated that word normal? It gets used so much because even therapists use it and its well a normal child and you think well why is he not normal just because what is normal? Theres no denition. I dont know, its perhaps me being a bit sad that. But I mean I just think . . . PF: No, not at all, I think its a very good point. Olivia: Even with the nurse. Jeff (husband): The words thrown around a bit too much. Olivia: Yeah, it does get thrown around a lot. PF: Yeah. Olivia: [ . . . ], but what gives somebody the right to say whats normal and whats not? The narrative of challenge also appears to provide a more critical lens for viewing apparently humanistic social-care practices. Mothers may be suspicious of the motives underpinning professional help and may challenge its legitimacy. Some mothers have explained that they have been deterred from seeking counselling for themselves as they were afraid that they could be seen as posing a potential risk to their children. Professionals are regarded as policing the family (see Peckover 2002) and mothers may view the surveillance in a threatening light. One parent, Sylvia, who is a wheel-chair user, explained that she was careful in her presentation of information to professionals. After the birth of her child, the nursing staff in the hospital had expressed scepticism about her ability to cope with a newborn baby. A home visit was arranged to assess her capabilities and the suitability of her home. Sylvia felt that, as a disabled person, the expectation was held that she would be unable to provide an adequate standard of living for her child. This in itself raises interesting questions about the social and economic marginalisation of disabled people. Sylvias house, however, is comfortable, clean and well ordered. Nevertheless, she felt obliged to spend hours preparing it for inspection. Her fear was that any negative observation could potentially result in her child being regarded as at risk. These heightened expectations have been widely reported in literature on disabled mothers (see for example, Booth and Booth 1994, 1998). The assessment of risk was, in Sylvias view, based on normalising discourses of motherhood (Phoenix 1991, Phoenix et al. 1991), a perspective that resonates with Foucaults (1977) concept of disciplinary power; that is, the process by which professionals develop regimes of truth to observe and regulate people, who form the objects of their gaze. As a disabled mother with a disabled child, Sylvia no doubt felt doubly disadvantaged, although the policing of parenting has been widely discussed in relation to other marginalised groups, in particular teenage mothers (Lister 1999 and Smith 1999, Young 2002).
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While the narrative of challenge is often steeped in suspicion and defensiveness, it can lead to active resistance against oppressive and normative values. Cheryl, for instance, was the parent of a child with autism. She perceived the outside world as hostile and judgmental and spoke at length of the difculties she encountered when dealing with her childs behavioural problems in public. This, she explained, is particularly problematic if the child looks normal. Cheryl explained, for instance, that outings to the supermarket were often a nightmare because of the reactions of some members of the public. It was not uncommon, she explained, for her son to be rebuked by other people on account of his abnormal behaviour. Cheryl was furious at what she perceived as the unjustied hostility of members of the public. While Cheryl nds her journeys into the world challenging, she, nevertheless, constructed them as being ultimately worthwhile on the basis that they would contribute towards changing intolerance within society. This is how the world can be changed, she explained, we need to change peoples thinking around disability. The notion of being a ghter for a change in societal values appears as a dominant gure of speech within narratives of challenge. Sue, for instance, who has a two-year-old daughter, Kylie, with Downs Syndrome, described herself as a ghter, but was adamant that one day Kylie would present the news on TV. Her ght is for her people to recognise the potential within Kylie of which she herself is convinced. Sue explained how she had recently been obliged to appear before a tribunal when her application for Disability Living Allowance had been rejected. She experienced the tribunal as a degrading experience, in which she had been subjected to an unjustied cross-examination that had touched on very personal issues. The atmosphere in court had, she explained, been formal and bureaucratic and Sue had been indignant at how her daughter had been spoken of as though she were a number. As an act of resistance, Sue had pulled out a photograph of Kylie and placed it in front of the judges demanding that they speak about her as a person. Her appeal for Disability Living Allowance was rejected but Sue, undeterred, announced that she would not give up. Her subsequent application was successful which may suggest that Sues assertive approach had possibly been the right one to take under the circumstances. The narrative of challenge may be empowering as it can provide mothers with a strong sense of their own agency. Soa, for example, is a woman of Pakistani origin who has twins, one of whom has cerebral palsy. Soa spoke warmly of the nursing staff who had attended to her in the maternity wing, explaining how kindly she was treated. She felt that this was a consequence of her own positive behaviour, in particular her civility towards the staff and the practical efforts she made to take care of her babies. She was, for instance, proud of the fact that she had persevered and breastfed both twins and she was proud that, on a return visit to the maternity wing, these efforts were remembered and acknowledged by the staff. Soa also believed that part of the reason why Ahmed (her son with cerebral palsy) was always so popular People see the boy, not the label is because they take their cue from her. They pick up on her positive attitude towards him and also the fact that she will ensure that he is treated as an equal. The thing with me is that I dont like halfmeasures. If I do something, I do it wholeheartedly and I want the full impact. Seen from this perspective, the narrative of challenge is more enabling and empowering than the linear narrative that tends to obstruct alternative perspectives. When constructing their stories within the narrative of challenge, mothers resist dominant and oppressive notions of normality and regain a sense of their own agency. There is, however, a danger that a strong sense of agency may lead some mothers to an exaggerated sense of their own responsibility, whilst failing to take account of oppressive narratives and practices that clearly act to curb their freedom. Soas sense of agency resonates with Giddenss (1991) notion of the autotelic self, that is the individual who has the ability to respond to
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uncertainties and to translate potential threats into rewarding challenges. If individuals are constructed as holding the power within them to escape from present circumstances, there is a risk that they may also be held personally responsible for adverse circumstances related to structural disadvantage. While the narrative of challenge enables mothers to identify and resist oppressive interpretations and practices it remains bound up with the notion of a master story, a characteristic it shares with linear narratives. The planning motif (Addelson 1994: 45) remains intact and meaningfulness is created as the narrative moves towards a climax or telos (MacIntyre 1981: 202). The agents are therefore people who are able to adopt a life plan and carry it through. However, whereas linear narratives tend to dene and direct progress by an array of experts and specialised forms of knowledge, the narrative of challenge tends to question these. Its continued insistence on a unied and coherent story can, however, be hard to reconcile with the normal complexities, contingencies and experiences of human life, and be harder for some lives than for others. As Walker (1998) puts it: When I try to imagine maximal integration I nd myself imagining something either desperately simple or intolerably suffocating. I picture tired stories being dutifully tended and maintained because they are integral to an existing plot. I picture something especially onerous for those who feel that others have had a disproportionate hand in writing stories for them that are limiting, cruel, oppressive, or alienating to some things they sense but do not (yet) have stories available to express. I picture frustration for ones whose stories have withered or blown up or grown painfully strained, and who need quite new ones. These are at least reason to be suspicious of maximal integration as a uniform ideal. Furthermore, the unied, coherent narrative of challenge often relies upon an individualistic ideal of independence: of mothers embodying the ghter as solitary entities. Following Reindall (1999) and Goodley and Rapley (2001), forms of disability activism that simply situate independence as the necessary opposite of dependency, risk recreating false notions of autonomy. Narratives of challenge, then, often ignore the interdependent and relational qualities of storytelling, living, being and becoming. Life is not simply one or ones story. In our research we have found that mothers have devised other stories that are less reliant on a unied plot of independence towards future goals, but, stories that are exible, open to uncertainties and adaptable to a whole host of contingencies. It is to these narratives, that we have termed the philosophy of the present and becoming, that we now turn. Mothers as philosophers of the present and becoming The philosophy of the present is an expression taken from Davies (1997) and Ezzy (2000) who describes it as a liberation from a need to ght for the future, thereby freeing a person to enjoy the present for what it is. It is characterised by overlaid and interwoven values that are applied to interpret uncertainty as an opportunity to focus on the quality of life in the present. This is the register of the active and always becoming storyteller. Ezzy (2000) rejects the view that inaction and powerlessness are the consequences of seeing the future as uncontrollable. Instead, acknowledging that the future is not always amenable to control can provide further insights. To view ones own life as relational and ongoing, rather than as a project that is autonomously directed under ones control, opens us up to recognise how other peoples lives are inuenced by our actions. This type of awareness may result in empathy and a strong sense of responsibility towards others. As life is not conceptualised in terms of linear progression, but more in terms of a book that can be opened at any
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point, it creates opportunities for a range of stories that are neither linear nor reliant on the unied plot of a solitary and heroic individual. In a recent article on the experience of ageing Leach (2005: 19) suggests the usefulness of other textual forms such as patchworks; hybrids; heterotopias; hypertexts . . .. This open-ended uncertainty of the narrative of the present can replace concrete hope with transcendent hope (Marcel 1962 cited in Ezzy 2000: 607). Hope is not focused on achieving a concrete goal. The hopeful person, rather than being dened by particular wishes, is continually open to the possibility that reality will disclose as yet unknown sources of meaning and value (Barnard 1995: 48, cited in Ezzy 2000: 607). Such sources are, of course, to be found in relationships with others. We can identify numerous examples of the philosophy of the present within the mothers narratives. Soa, discussed above in relation to the narrative of challenge, provided us with narratives of the philosophy of the present. Soa, who is a practising Moslem, explained that according to Islamic teachings a disabled child was considered a gift that brings goodness and mercy. Yet, Soa pointed out that the everyday cultural practices of some Moslems were, as with other religious groups, sometimes inconsistent with religious teachings. Nevertheless, in her own case, Soa linked her perspectives on disability strongly to her religious convictions. She explained how her son Ahmed had enriched her life and the lives of many people he had come into contact with. She felt he was special and was blessed with the ability to reach out and touch people and bring people together in new ways. Soa expressed an interest in using the experience and knowledge she has acquired in her role as mother/carer to work in the area of special care needs. This is an ambition shared by several interviewees. Describing her two autistic children, another interviewee, Linda, stated that she would be happy to have another autistic child as They are lovely kids. Theyve really taught me something. Theyve taught me to look at people in different ways. She also explained that she had become far more tolerant of other people and of diversity generally. She observed that when she goes to her daughters special school she sees mothers who have children with severe impairments. Nevertheless, these mothers are often laughing and smiling and seem to really enjoy their children. Linda explained how her views had changed in the sense that she was now able to live in the moment. She took genuine pleasure in her children and would not wish them to be any different, her only concern being that they were happy. While she had all sorts of difculties, for instance, getting her children to co-operate when she wanted to get them dressed, she said, Theres always a lot of fun, theres always a lot of laughter. I try to make everything into a game and you nd that they work a lot better with you that way, rather than shouting. Although the philosophy of the present can be a joyful narrative, we are not attempting to portray disabled children as special cases who, through their impairment, enable others around them to become better people. Such a view would smack, yet again, of emphasising them as different and, solely, in terms of their impairments. On the other hand, the overwhelmingly positive picture painted by mothers such as Linda and Soa could be interpreted as evidence that they are simply subscribing to normative notions of good mothering (see Miller 2005). As mothering tends to be constructed in essentialist terms as a natural ability, a woman who fails either to cope or to view it as anything other than entirely positive risks inviting moral sanction. As Miller (2005: 110) puts it: Narratives of early mothering, [ . . . ] draw on, and are shaped by, dominant moral discourses of maternal responsibilities and intensive mothering, and representations of childrens needs, which must be met. [ . . . ] So, if normal difculties are voiced it is always in the context of things now being better, fabulous and under control.
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While it is likely that the narrative of the present owes much to dominant discourses of mothering, we contend that there is a fundamental difference for mothers whose situations, according to dominant discourses, are constantly being labelled either tragic or heroic (McClaughlin 2005, Read 1991, 2000). The fact that the mothers of disabled babies and children choose to draw on what may be viewed as unrealistically positive models of motherhood, in the same way as many other mothers do (see Miller 2005), can itself be interpreted as an act of resistance against linear medicalised models that tend to promote the notion that it is essentially tragic to be the parent of a disabled child. It is important to recognise such developments. After all, there is a tendency to dismiss such mothers as having not taken on board the reality of their childs impairment. Below, a healthcare professional expresses a view in relation to this: I still seem to have parents who are getting on quite nicely and adapting to this, and I have it said to me by other people involved, oh its because they havent taken it on board. Now, they have very much taken it on board, but you cant live your life being worse case scenario. [ . . . ] We dont have any right to take away people hopes [ . . . ] and why shouldnt they get pleasure out of the baby? We believe that mothers in our study have drawn our attention to the ways in which certain aspects of a childs difference and uniqueness enable mothers to embrace alternative and positive frameworks of meaning (Vincent 1998) in the here and now, as well as to engage in a form of reection that challenges hegemonic values (see Fisher forthcoming). Miller (2005) suggests that self-reexivity may be enhanced through certain life events. She identies transition to rst time motherhood as such an event. We suggest that this may be particularly the case for the research participants in this study who enter a new world of parenthood under especially challenging circumstances. It is important to stress that the narrative of the present does not eclipse alternative understandings. In many stories, all three narratives we have identied thus far interweave in a sometimes contradictory fashion that dees any attempt towards a rigid categorisation. Interwoven and multi-layered narratives reect complex lifeworlds and suggest that mothers understandings of their childs disability are constantly open to renegotiation and ux. Meanings seem to form into temporary nodes of understanding (see Laclau and Mouffe 1985) that are constantly being contested. In the extract below, the interviewee begins by expressing views consistent with a linear narrative before moving towards a philosophy of the present: Every second of his day, I was trying to teach him something. Everything had got a target about it. [ . . . ] but, recently Ive thought just love him. I cant keep chasing that normal, normal. I feel Ive done so much to try and make him normal. I just cant keep that up. I need to accept him as he is and enjoy him as he is. Another complementary way of understanding mothers engagement with the philosophy of the present is located in Deleuze and Guattaris (1987) understanding of becoming. By this, we are not referring to how the human being is constructed (Lawlor 1998) but to how subjects transcend the given (Buchanan 1997): to become or to engage with places of immanence. For many of our mothers, their reections have sometimes taken place as if they lacked the conceptual frameworks through which to describe their experiences. One take on this would be that they lack a reexive vocabulary which allows them to talk of themselves as subjects, as mothers, as mothers of disabled children. In other cases, as we
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describe above, it could be argued that some mothers apparently contentedly reect on the present, with seemingly scant regard for past and future. An alternative reading is provided by Deleuze and Guattari (1987). They suggest that natural history and social science is based, in part, on genealogical understandings of progression that tend to think in terms of relationships (between A and B). Instead, they posit, thinking should be and actually is enacted in terms of production (from A to Z). Here then, becoming is not based around relational binaries (becoming a good parent rather than a bad parent) nor is it about constructing a particular human subject (the good mother). Instead, becoming produces nothing other than itself. What is real is becoming embracing the becoming of parent/ing (Deleuze and Guattari 1987: 263): Becoming is a rhizome, not a classicatory or genealogical tree. Becoming is certainly not imitating, or identifying with someone; neither is it regressing-progressing . . . bands, human or animal, proliferate by contagion, epidemics, battleelds and catastrophes (1987: 2656). Such a position is captured by Cheryl: Im coping. I do one thing at a time, one day at a time. I dont make huge plans, I dont expect certain things. If we overcome a hurdle then great but therell be something else around the corner (Cheryl Smith, mother of Alex who has been labelled as having autism). Here being is best understood as pure difference or becoming. Bogard (1998) suggests that we should stop looking for order, get rid of the identity logic that x = x = not y and embrace the multiplicities of the social machine that produces x + y + z + a. Here we need to embrace Deleuze and Guatarris nomadic rhizomatic thought as the means through which to refute the urge to impose forms, order and subject: Write to the nth power, N-1, write with slogans: Form rhizomes and not roots, never plant! Dont sow, forage! Be neither a One nor a Many, but multiplicities! Form a line, never a point! Speed transforms the point into a line. Be fast, even while standing still! Line of chance, line of hips, line of ight. Dont arouse the General in yourself! Not an exact idea, but just an idea (1987: 27). Indeed, for Bogard, these ideas actually become sense: something that occurs not through relationships with different subject binaries but through the: . . . dualism within sensible, material things themselves, within Becoming itself, between that which conforms to the idea and that which doesnt; between the Becoming of limited and measurable things, and Becoming without measure, a veritable becoming-mad (1998: 60). This becoming-mad is not to be confused with the abnormal psychotic subject of capitalist discourse but as a necessary rhizomatic moment. When we become mad, the self collapses as a determined form and content and becomes a shifting composite of events not a unitary self housed in a single body, but multiple selves in multiple bodies (Bogard 1998: 60). Here we nd sense along the edge of becoming-mad: a discomforting sense, which is paradoxical and different. Here then parental narratives reject relationships between available subjects and in turn embrace becoming:
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For a while I really couldnt talk to people about the Downs Syndrome. Dont get me wrong, I wasnt ashamed of the fact that Ale had it and I wasnt particularly upset, I just didnt want him compared to other children. People would say, Oh this is what another child with Downs Syndrome can do at this age. I knew they were being positive but I didnt want to think about other peoples children. I just wanted to focus on Ale as a tiny baby and knowing that we had all that to come later on but just focus for the present (Jennifer Wood, parent of Ale). Becoming, becoming mad and becoming parent are the very stuff of sense and of being. Rather than looking for the nal thought, the end product, the bounded, unitary humanist subject, the end of the story; we are encouraged to work alongside the very resistant and ighty nature of becomings. Appraising the narratives While the three identied narratives may have been weighted differently in each mothers story, it was above all the philosophy of the present and becoming that all mothers have identied as being the helpful in their interactions with professionals. The most helpful interventions are those in which professionals acknowledge the childrens humanity and the fact that the children have much to offer in relationships of great mutual value. As one mother put it, At the childrens centre they treat him as a child, as a baby. He has a problem, so what? I love her [the physiotherapist] for that. She treats him as though hes a normal baby. Another spoke warmly of a consultant who treats her son like a child, not a label. He tries to get him laughing. He puts me on cloud nine. This was contrasted with other experiences when the consultant had concentrated merely on the syndrome and provided the bleakest of prognoses.

Key concluding points This paper has identied three dominant narratives within the stories told by mothers with babies and young children with special care needs. It has been argued that the linear narrative, the most closely associated with an individual model of disability can obstruct the development of positive discourses around disability. The linear narrative closes down future perspectives whilst offering little in their place. The narrative of challenge is also orientated towards future outcomes but it is more enabling in that it can promote mothers agency through supporting them to challenge conventions of normality in a way that will support the development of more inclusive discourses that set less store by the normal/abnormal dichotomy. The philosophy of the present and becoming was identied as one that enables mothers to enjoy their children in the present. Leading to a hopeful openness with regard to the uncertainty of the future, the philosophy of the present values children in ways that transcend categorisation of normality and abnormality. In this sense then we come back to where we started: narrative. We are encouraging, though, a recognition of the story that is always becoming and which might never be completed. Address for correspondence: Pamela Fisher, Informatics Collaboratory of the Social Sciences (ICOSS), University of Shefeld, 219 Portobello, Shefeld S1 4DP e-mail: p.l.sher@shefeld.ac.uk.
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Acknowledgements
Our colleagues at the University of Newcastle, Dr Janice McLaughlin and Dr Emma Clavering have provided invaluable support and feedback on this paper. Please see the project website for details of their publications and other dissemination that brings together analyses from both sites of the project: http://www.shef.ac.uk/inclusive-education/disabledbabies/ (ESRC project grant RES-000-23-0129)

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