Disability Research Today

International Perspectives

Tom Shakespeare, Tom Shakespeare

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317750949
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Disabilità in sociologia

Grouped around four central themes – illness and impairment, disabling processes, care and control, and communication and representations – this collection offers a fresh perspective on disability research, showing how theory and data can be brought together in new and exciting ways.

Disability Research Today starts by showing how engaging with issues around illness and impairment is vital to a multidisciplinary understanding of disability as a social process. The second section explores factors that affect disabled people, such as homelessness, violence and unemployment. The third section turns to social care, and how disabled people are prevented from living with independence and dignity. Finally, the last section examines how different imagery and technology impacts our understandings of disability and deafness.

Showcasing empirical work from a range of countries, including Japan, Norway, Italy, Australia, India, the UK, Turkey, Finland and Iceland, this collection shows how disability studies can be simultaneously sophisticated, accessible and policy-relevant. Disability Research Today is suitable for students and researchers in disability studies, sociology, social policy, social work, nursing and health studies.

PART I

Illness and impairment

1

SOCIAL EXPERIENCES OF PHYSICAL REHABILITATION

The role of the family

Dikmen Bezmez and Sibel Yardımcı

Introduction

This chapter is part of a larger ethnographic study conducted in one of the leading Turkish rehabilitation hospitals in Istanbul during 2013 to explore social constructions of disability and the experiences of disabled people themselves with these constructions. The fieldwork highlighted the role of the family in rehabilitation and in the social construction of disability during rehabilitation, which is the main focus of this chapter.

Semi-structured interviews were conducted with 42 people including seven doctors, two nurses, two physiotherapists, one social worker, one non-medical personnel, 20 patients staying in the hospital, and nine former patients who now live in their homes: seven of these 29 disabled people were women. The interviewees were all more than 20 years old and had acquired physical disabilities through traumatic injury or illnesses. For the sake of anonymity, we use numbers for participants, together with the letters D for the doctors, PT for physiotherapists, N for nurses, SW for social workers and P for current and former patients.

The literature on the family and disability often concentrates on the difficulties families have to cope with when raising disabled children (Dowling and Dolan 2001; Al-Krewani et al. 2011; Stevens 2010; Lowell and Mason 2012; Ryan and Runswick-Cole 2008) and their coping mechanisms (Rao 2001; Blum 2007; Avery 1999). Discussions of the family as an agent actively participating in the social construction of disability during rehabilitation are rare. Yet in Turkey, the health care system generally and physical rehabilitation specifically are inherently based on the assumption that the patient/disabled person enters the system with a carer (refakatçi), who is often a family member. The presence of the refakatçi is such a given that in several interviews the medical personnel (interviews with D1, D2, PT1, PT2) mentioned the family as one of the prime determinants of ‘success’ in rehabilitation. Family members’ taken-for-granted responsibilities include continuing the exercises learnt from the physical therapist, supplying medication, promoting hygiene, and psychological support. Rehabilitation, as a concept and as a process, assumes the presence of the family to such an extent that any consideration of social construction of disability needs to put the family’s role centre stage. This chapter will do just that, by engaging with questions such as: What is the role that families play in the social construction of disability during rehabilitation? How do disabled people experience such constructions? Do they internalize/negotiate/resist? How does family presence affect their lives in the long run, years after the initial rehabilitation?

This chapter combines a multiplicity of theoretical approaches to disability. Disability studies began with the shift from a medical model to a social model, based on the dichotomy between (social) disability and (physical) impairment. Next, this dichotomy was rejected and impairment itself was conceived as a socially constructed category (Tremain 2005; Davis 2006). Finally, it was argued that the social constructionist approach had been ignoring the reality of the body (Siebers 2006), the importance of subjective experience of living with a disability and the agency of disabled people (Hughes 2005). Consequently, emphasis was drawn on the concepts such as embodiment and everyday life (Moser 2005; Watson 2002; Zitzelsberger 2005) and phenomenological approaches (Hughes 2005): all of these studies put the subjective lived experience of disability centre stage. Finally, many argued for a multiplicity approach, combining analyses of social structures with processes of social construction and the everyday experience of living with disability (Thomas 2007; Turner 1995; Siebers 2008; Gareth 2005; Shakespeare 2006; Papadimitriou 2008; Zitzelsberger 2005). This chapter applies a similar approach by analysing both processes of social construction of disability and disabled people’s experiences with such constructions: we refrain from arguing that families are either ‘good’ or ‘bad’. Different disability constructions can come to the fore at different stages of rehabilitation and such constructions are not always mutually exclusive: they can take place concomitantly. The chapter opens with a review of the literature on social construction of disability and embodiment in rehabilitation, as well as family and disability. Next, we elaborate on the discourses summarized above using numerous examples from the field, before drawing some conclusions.

Rehabilitation, family and embodiment

An overview of the disability studies literature on encounters with health and rehabilitation services highlights three main categories of disability construction: the disabled body is constructed as dependent, docile and subservient (Thomas 2001; Sullivan 2005); as invested with the possibility of a ‘second chance’ to ‘fit back’ into society (Barnes and Mercer 2003: 82) and as a ‘self-reliant client’ (Abberley 2004), in the sense that it should take responsibility in its ‘treatment’. The literature also highlights the roles that disabling ideologies play in facilitating such constructions (Swain and French 2008) such as the ‘personal tragedy’ approach (Hughes 1999), the conception of the disabled body as some sort of an ‘abnormality’ in need of ‘fixation’ (Thomas 2001) and as an ‘economic burden’ (Berger 2005).

Although there are few discussions of the role of the family in rehabilitation, there is work on the relationship between the family member and the disabled person. For example, there is work that explores how mothers become representatives of disabling ideologies: in a social context where disability is often devalued, mothers might seek to increase their own and their disabled child’s social value by positioning themselves as ‘good mothers’, who are ‘remarkable’ caretakers (Traustadottir 1991; Todd and Jones 2003; McKeever and Miller 2004; Knight 2013; McLaughlin and Goodley 2008). Similarly, Blum refers to work which argues that ‘to defend their valor, mothers reinforce the ‘natural’ gendering of care’ (Litt 2004; Malacrida 2003; Singh 2004; Blum 2007). This can lead to overprotection and a reinforcement of relationships of dependence. Second, parents, absorbing medical language due to their frequent encounters with health professionals, could internalize and promote a medical approach to disability at home (Avery 1999), where concepts of ‘normalcy’ (Avery 1999; Darling 2003) or ‘dependency’ (Veck 2002) might dominate their approach to their children. Another axis in this literature highlights the ‘mother-blaming’ tendency in some of the arguments above and draws attention to some of the structural factors that could underlie such relationships.¹ Here, factors such as the role of the ‘heightened public stinginess’ in exacerbating ideas of ‘economic burden’ (Blum 2007: 203) and thus the social devaluation of the disabled body, the isolation and discriminatory attitudes that mothers experience along with their disabled children (Blum 2007; Ryan and Runswick-Cole 2008: 202) are highlighted and a need for caution in approaches to mothering a disabled child is underlined.

The embodiment literature explores the mechanisms through which disabled people try to resituate themselves in their social setting: first, disabled people re-evaluate and renegotiate their interests and abilities in the past in their effort of embodiment (Papadimitriou 2008: 699). They ‘redefine, re-examine or modify past experiences, abilities, lifestyles and habits in their efforts towards re-embodiment’ (ibid: 691). Second, there is also a constant negotiation with the outside world, in the sense that the social forces within which the disabled person finds herself/himself determine the process of embodiment significantly (Thomas 1999: 48; Watson 2002: 519). Papadimitriou calls this a ‘situated accomplishment’ (ibid.: 697, 699). Whether workplaces, public spaces are accessible (ibid.: 701), whether the status of being a ‘wheelchair user’ is socially devaluing (ibid.: 699), whether one is exposed to disability activism (Thomas 1999: 53) will all have an effect on the embodiment process.

Others have looked at the outcome of the embodiment process, where normality appears as a key dimension: Moser (2005) explains this through the example of Jarle who emphasized ‘that he is a competent, normal subject’ (2005: 672); Watson talks about a ‘disembodied’ (2002: 515) disabled identity, not as a denial of impairment, but so that any difference between disabled/non-disabled is conceived as an outcome of ‘discrimination and prejudice’ rather than ‘physicality’ (ibid.: 514). Similarly, Swain and Cameron explain how some people with hidden impairments try to pass as non-disabled (1999: 76) and thus ‘reject disability as a social identity’ (ibid: 75) in order to avoid the perceived stigma.

Another such framework through which the embodied experience of disability is explained relates to the concept of ‘fate’ (Moser 2005: 678–681). Through Siv’s example, Moser explains how Siv ‘enacts disability … as a fate to be accepted and lived with’ (2005: 679) and continues with a discussion on the kind of subject this acceptance of disability can lead to – e.g. this position’s potential relation with the concept of ‘normality’ and the way it works in the orderings of everyday practice. A different form of acceptance is found when Watson (2002) refers to a process of ‘the reconstruction of normality in constructions of self-identity’ (ibid.: 519). Accordingly disabled people ‘challenge the social construction of what it is to be normal’ (ibid.: 519) and in people’s everyday experience of embodiment, they perceive themselves as both different and normal, because ‘this difference has little or no consequence’ (ibid.: 520).

Alternatively, Watson refers to some disabled people – all women (ibid.: 522) – who describe themselves in negative terms. Watson describes a process where self-identity is being damaged, because people ‘attribute blame to the self for things that are the responsibility of others…’ (ibid.: 523), like the tendency to blame one’s disability in the case of an inaccessible building instead of the architect. Watson quotes an informant saying: ‘I think that I look terrible …’ (ibid.: 522) and another stating: ‘Well, you are so much trouble to people’ (ibid.: 523).

Finally, there is the category called ‘passion’ by Moser (2005, 681), where the author refers to those embodiment processes, in which disabled people are described as ‘being immersed in intimate interaction …, of being passionately taken and carried away by it and the bodily kick and transformation that comes with it’ (ibid.: 682). Moser exemplifies this experience by Vidar, one of her informants, who is an active performer of downhill wheelchair racing. She refers to both a kind of ‘agency and control’ delegated to the body (ibid.: 682) and yet also a process of being taken away by passion.

Situating the family in the context of rehabilitation: the Turkish example

In Turkey, we found that the family is not only the last resort to which a person turns when s/he discovers s/he has become disabled, but also a major stakeholder in rehabilitation processes, and quite generally, the determining actor of her/his remaining lifetime. This is clearly expressed in one interviewee’s statement that ‘when I first had the accident, what I was most scared of was the thought that my wife might leave me’ (P1), and another’s description of how life unfolds after disablement:

If the general public is not conscious and supportive, the family is an incredible support. Its love, respect and support mean everything to you. You live through and get over this tragedy with them […]. You help them overcome this trauma, and they help you. Without this [help] life would be intolerable. I know many cases, where people said they did not love their families, they did want to continue without them, and life has become very very difficult.

(P2)

Especially due to lack of investment in this hospital and the lack of medical personnel (especially physiotherapists) and cleaning staff, refakatçis have to undertake a range of responsibilities, from helping in physiotherapy exercises through cleaning rooms to giving psychological support. Except a few cases where paid refakatçis are present, spouses (P1, P3, P4, P5, P6, P7), siblings (P8, P9, P10, P11), mothers (P2, P12, P13, P14), children (P15, P16), nephews (P18), or a combination of those (P19) constitute the primary support for a person who has become disabled. Many interviewees made clear that ‘if they had made such an improvement, this was due to their spouse’s help’ (for example, P19). The role of the family does not end at the hospital however, and the majority of disabled people continue to live with their families, with a very limited social life, leading an interviewee to say, ‘there is no one left in my life except my wife’ (P5). For example, in Turkey, it is the whole family who are assessed for welfare benefits, not the individual (Yılmaz 2011). As a result, the family becomes a key determinant of how a disabled person experiences embodiment during and after rehabilitation.

Rehabilitation: a shared experience

The support of family members as refakatçis is so widespread and the organization of hospital life and treatment procedure are so firmly based on the family that rehabilitation may be described as an experience shared by the patient and the family. There are major gender differences: if a wife becomes disabled, in 70–80 per cent of the cases, the husband does not perform the care-giving tasks, but often either arranges a paid attendant or leaves his wife. Conversely, a wife rearranges her life in accordance with her disabled husband’s needs. If the newly disabled person is a child, then it is usually the mother who assumes the duties (SW1).

As one ...