TO WHAT EXTENT IS THE SOCIAL PROBLEM THAT IS DISABILITY A MATTER OF PRIVATE CONCERN FOR THE FAMILY?
Disability excites interest because disability is seen as a social problem i.e. it is seen either in terms of personal tragedy or of blame. Social problems generate public concern and private misery and call for collective action to remedy this (Worsley, 1972). Disability has been theorised in a number of different ways, most of which locate the problem in the individual rather than the broader social, political, and economic influences. This has implications for the location of the blame for social problems, such that they become depoliticised. The rise in the idea of the politics of minority groups is well documented and implies that in the case of people with disabilities who are unable to work the Government should provide a whole range of services.
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Because most Governments are unwilling to commit themselves this far, disability is again defined as a social problem, and often the burden of care lies with the family (Moore, 2002). This paper will give an account of definitions of disability and the ways in which they impact on disabled people. There will be an exploration of the concept and history of the family and its contemporary diverse forms, and an examination of the ways in which the ideology of the family has problematised the concept of care. The paper will then assess how the family has been implicated in both solving and defining the problem of disability and to what extent the social problem that is disability is a matter of private concern for families.
Models of Disability
The medical model of health is the most powerful in western society, doctors introduced a ‘curative’ model of health that concentrated on the body where the hospital became the space for such models were put into practice (Walsh et al, 2000). This model situates ill health in the individual and ignores the social circumstances that may give rise to ill health, furthermore it has impacted on government healthcare policy throughout the twentieth century. The situation is exacerbated by the medicalisation of many conditions making them into a problem that can only be addressed by experts, as Brisenden(1986) comments:
The problem … is that medical people tend to see all difficulties solely from the perspective of proposed treatments for a ‘patient’, without recognising that the individual has to weigh up whether this treatment fits into the overall economy of their life. In the past especially, doctors have been too willing to suggest medical treatment and hospitalisation, even when this would not necessarily improve the quality of life for the person concerned. Indeed, questions about the quality of life have sometimes been portrayed as something of an intrusion upon the purely medical equation. (Brisenden, 1986:176).
The medical model leads to the treatment of people with disabilities as passive objects of medical attention. This is oppressive of disabled people and spreads to other social relationships, it sees disability as pathological i.e. rooted in a person’s biology, and thus unchanging. Contained within this model is the perception of people with disabilities as problematic. Disability has also been theorized as a personal tragedy, resulting in individuals with a disability being seen as victims. This results in policy making whereby people with disabilities need compensating for their disability.
This model also affects social relationships. The view of disability as personal tragedy individualises disability so that it becomes depoliticised and the disabled person must make his or her adjustments to that disability as best they can (Dalley, 1990). In locating disability within the individual society denies any responsibility to cater for the diversity of their needs (Oliver, 1990). The third way in which disability has been theorized is in the social model of disability. This model is becoming increasingly dominant in research on disability. Vassey (1992) has described it thus:
redefining disability in terms of a disabling environment, repositioning disabled people as citizens with rights, and reconfiguring the responsibilities for creating, sustaining and overcoming disablism (Vassey, 1992:44)..
Here the person is disabled because of the refusal of society to provide for example suitable access for the wheelchair user. This model stresses that a disabling society leads to the exclusion of people with disabilities. Oliver (1996) contends that this notion has been politically empowering for disabled people, and has allowed a previously contested notion to develop an agenda that has influenced policy making. Some people see disability as entirely a result of social structures and processes while others feel that society compounds the difficulties that disabled people encounter. Disability is not a universal category, people have different types and degrees of impairment, some can function well with technical aids while still others are, to a greater or lesser degree, dependent on the care of other people (Dalley, 1988).
The Concept and History of the Family
Parsons (1955) argued that the family is the primary place of socialization and serves to introduce and instill the norms and values of society. Parsons model was what is commonly known as the nuclear family, i.e. parents and children living together to provide the mutual love and support that individuals need to be productive members of society (Giddens, 2001). Murdock (1949 cited in Giddens, 2001) maintains that traditional concepts of the family are a universal phenomenon. Others criticise the nuclear model for being too narrow and for neglecting the fact that not all family members experience life in the same way (Abbott and Wallace, 1997).
Whether the nuclear family is regarded as universal depends largely on how the family is defined, certainly it is no longer the norm in contemporary society. Gittins (1993) maintains that there are a wide variety of domestic relationships. Thus relationships may be universal but the forms they take can be infinitely variable. There are many single parent families, whether through death, divorce or choice, there are also second marriages that often result in reconstituted families. The nuclear model relates specifically to nineteenth and early twentieth century ideological views of the family (Giddens, 2001).
The Family and Ideology
Until the late seventeenth century there was little or no distinction between the public and the private sphere, families generally worked the land and they did this together. The rise of industrialization and the growth of the towns brought massive changes to what had constituted family life up until that time. Feminists argue that for centuries women have been the subordinate sex in society and this subordination is largely a result of the fact that they have been born women rather than men. This subordination increased with industrialisation and the separation between public and private spheres (Oakley 1982).
The coming of the factory meant that the family was replaced as the unit of production. The growing dependence of children, Oakley (1982) states, led to women’s increased dependence on men and their restriction to the private sphere. Throughout the nineteenth century there was a growing idealisation of the feminine. Women were regarded as both physically and emotionally weaker than men and unfit for the same roles.
Victorian ideology said that women were created to help men and should thus remain at home. This primarily affected the middle classes but as the century progressed the working class were also influenced by this ideology, locking women into the housewife role (Oakley, 1982). Murdock (1949 in Giddens, 2001) argued that gender roles are the natural result of the biological differences between men and women. Men’s superior strength and women’s childbearing capabilities make the sexual division of labour the most sensible way of organising society.
Delphy (1977) maintains that this results in sexual inequality. Gender differences are not innate but socially constructed to serve the interests of the socially dominant group. Delphy contends that women are a separate class because the categories of man and woman are political and economic, rather than eternal biological categories. Within the family particularly, women form a class who are exploited by men, as Delphy states:
While the wage-labourer sells his labour power, the marrie woman gives hers away; exclusivity and non-payment are intimately connected. To supply unpaid labour within the framework of a universal and personal relationship (marriage) constructs primarily a relationship of slavery (Delpy, 1977:15).
This relationship has been exploited by successive Governments and is implicit in many social policy initiatives.
The Family and the Welfare State
The post-war welfare state which promised universal welfare provision, was set up on the assumption of full employment and the notion that men would go out to work while women stayed home (Abbott and Wallace, 1997).. Moore (2002) maintains that this is an ideological view of the family and how it might function. In the late 1970s the Tories actively discouraged alternatives to the traditional family e.g. cohabitation and gay partnerships (Abbott and Wallace, 1997). Since the Thatcher Government public and policy debates on family life, parenting and health have centered around the idea of responsibility (Such and Walker 2004) Moore (2002) maintains that in the thinking of the seventies and also in Labour’s Third Way, family members have a duty to help each other as it is not the job of the state to look after them.
The state takes over when no-one else is around to share the burden. The fact that the State has had to intervene, it is argued, is one of the reasons why the traditional family is on the decline. In a good society members should help each other without regard to personal benefit. The State should be there to provide a safety net when there is no other help available. New Labour advocate a mixed economy of welfare where welfare is provided in part by the state and partly by private companies operating for profit.
The shift from public to private has received much publicity and contributed to social problems and to social exclusion. Previously highly subsidized, or universal, services have either become part of the private sector, or have been subject to means testing, some welfare provision has been handed over to voluntary organizations. This has increased the likelihood that welfare and caring are now a private rather than a public responsibility (Giddens, 2001). This tends to stigmatise further those who are forced to rely on benefits, e.g. the disabled and their carers, usually women.
The State and Women’s Caring Role
Marxist feminists e.g. Walby (1990) argue that the gender ideology that has filtered down to the working classes has affected their solidarity as a class and this makes them more easily controllable by the Capitalist system. While Marxism gives an explanation of exploitation by the capitalist system it does not explain the inequalities between women and men. Delphy (1977) maintains that gender and sexual inequality should be the fundamental categories of feminist analysis. Marxism alone does not explain for example why women are seen as responsible for household tasks. Capitalism could still profit if men stayed at home. The Community Care Act of 1990 has imposed further responsibilities on women in the role of informal carers.
Dalley (1988) argues that much Government’s policy making has been based on ideologies of caring with the assumptions behind the idea of community care being based on outmoded notions of the family. In practice this notion of caring disadvantages women carers and also many disabled or older dependent relatives. Within such an ideology, the caring that women do in the home is considered to be a natural part of women’s role within the family. Thus, her caring role become invisible and shouldering the burden increases the likelihood that women will themselves be in need of care (Graham, 1993).
This is borne out by the increasing number of women who suffer from disabilities and mental health problems. Women’s caring role is further undermined by the idea that any health care that matters is given by professionals. When this is accompanied by Government discourses of self-help, self-reliance and the responsibility of the family this adds to the social stigma that disabled people face. It focuses on the disability, not the person themselves, inevitably this places an added strain on families. The prevalence of the medical model of health and the ways in which families are kept under-informed regarding the disability of a family member, particularly a child, affects family relationships. Gregory (1991) maintains that when a person is diagnosed as ‘diabled’ this affects the ways in which society and the family respond to and deal with that person.
Families themselves can tend to see the disabled family member as ‘sick’ and different. Gregory (1991) found that having a disabled family member also affected the way in which mother’s viewed themselves because ideological images of motherhood focus on having an able child. Thus a woman may feel that she is somehow not a mother because of the ways in which society defines motherhood. Press reports on disabled children and their families usually present them in terms of sacrifice and heroism (Gregory, 1991). This can affect family members response to the disabled person, their forced reliance on the medical model, and the view of disability as a tragedy becomes universalized. This misses the individual’s personal needs and circumstances. It seems that increasingly the social problem of disability is becoming a matter of private concern for the family. The NHS appears to take this view. While doctors may diagnose a physical or learning disability families are often left to cope without either sufficient information or professional help. In a number of cases families have reported that hospitals have refused to admit non-emergency cases unless a parent or carer remains on site to provide additional support (http://www.cafamily.org.uk/rda-uk.html). A shortage of nursing staff and the increasing tendency to perform surgery on a day care basis means that many families are left with extra caring responsibilities once they take the disabled child or adult home. (http://www.cafamily.org.uk/rda-uk.html).
Ideologies of the family and the medical model of disability exacerbate the social problems of disability. Discourses of family responsibility place a much greater burden on many people, particularly women who bear the burden of responsibility of care. Such discourses tend to make women who find it difficult to cope feel that they are a failure. This in turn reflects back on the disabled person who may feel that they are a burden. Clearly current policies and debates over partnership between the Government and families and family responsibility is moving closer to the view that disability is no longer a public concern but a private family one. Dalley (1988) argue that some form of institutional care e.g. supported living should replace care in the family. While there are support structures in place for people with disabilities, the extent to which informal carers have access to such facilities is very limited (Baldwin and Twigg, 1990).. Perhaps supported living arrangements along with family involvement in personal care would, arguably, take some strain off of the family and give more independence to the person with disabilities thus making the social problem of disability a shared public and private concern rather than simply a concern for the family.
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