People with disabilities can be taken to represent the cutting edge on what it may mean for everyone to live in a more integrated and democratic society- one that is able to work with and accept difference (Anne Yeatman, 1996)
This chapter will explain and analyse how theories and discourses of disability can influence policy decisions. The political nature of discourses of disability is explored further and it is argued that disability is a disputed concept and framed by discourses that have the power to exacerbate the marginalisation of people with disabilities. Traditional discourses of disability are contrasted with contemporary rights models and the implications for policy influenced by different models are explored.
In 1996 Professor Anna Yeatman released a report, Getting Real: The Interim Report of the Commonwealth/ State Disability Agreement (1996) for the Commonwealth, State and Territory Governments that reviewed the Commonwealth State Disability Agreement CSDA), a five year programme of service provision for people with disabilities that began in 1991 and which was jointly -funded by the Commonwealth and State Governments. The review by Yeatman is used in this thesis to provide empirical data of disability as well as provide critical insights of disability.
There are more than 3 million people with a disability in Australia. Together, they form a significant part of the community (Yeatman, 1996, 38). However, it is dangerous to view people with disabilities as a homogenous group. They comprise a number of disparate groups. The strongest distinction between policy decisions made in recent years and earlier policy is the focus on removing negative dependency stereotypes of disability (Lindsay, 1996, 3). Arguably, since 1992 many government policies have incorporated a rights discourse for people with a disability that places an emphasis on the independent status of people with disabilities (Bourke, 1996).
Defining disability is a problematic and contentious issue. It is complicated by definitions linked to individual eligibility criteria for program and financial assistance (Lindsay, 1996, 7). For this reason greater emphasis in this study is placed on theorising social constructions of disability as detailed in the following section. It is useful however to form a conceptual framework which accounts for nuances in terminology and disparities among different levels of disability.
Addressing the issue of terminology, there are three commonly accepted terms used which assist legislators in policy. They are often used interchangeably but as the following definitions indicate, they have subtle differences:
Impairment is thus considered to occur at the level of the organ or system function, while disability is concerned with functional performance or activity of a person and handicap reflects the interaction with, and adaption to, the person's surroundings (Yeatman, 1996, 37).
Fulcher and others are critical of technical distinctions as they tend to blur the political implications by normative assumptions. The assumptions are informed by a medical discourse that emphasises dependency and loss as defined by professionals (See Fulcher, 1989; Newell, 1998). However technical definitions are useful as a frame of reference as long as the political implications are not ignored. From applying the above terminology, handicaps are social and environmental disadvantages which result from impairment. Social and environmental Handicaps can be reduced by social, medical and technical adaptations which also reduce a personal disability. The only variable that cannot change is impairment. A man who loses a leg in an accident but is supplied with an artificial one still only has one biological leg. However, his handicap and disability may be significantly reduced. Yeatman criticises the confusion over terminology by governments and community groups and blames it for a dysfunctional approach to disability services:
The way that these terms are used within government and the disability community indicates clearly that understanding of the complexity of relationships between impairment, disability and handicap, of the need for support and assistance, and of ways in which priority for government intervention to provide this support or assistance might be determined, is not well developed in the disability services system....The bottom line is that as long as impairment is used as a descriptor in discussing need (emphasis added) for disability services, it will be difficult to develop a genuinely functional approach to the design and provision of such services. This confusion is also evident in arguments on unmet needs and relative priority (Yeatman, 1996, 39).
Yeatman observes that confusion in disability policies arises from inadequate definitions. The confusion casts doubt on the reliability of data about levels of demand for services both met and unmet. Many definitions are based on clinical descriptions of disability instead of emphasising the functional aspects which offer greater operational value in delivering services (43). Functional definitions of disability identify systemic environmental barriers faced by people with impairments. Reliance by policy makers on clinical definitions of disability, which lay emphasis on individual impairment, may lead to assistance programmes that overcompensate one group of individuals based on physiological impairment criteria and undercompensate others who have multiple or difficult to classify conditions. However, the person in the second, more problematic category, may face greater environmental barriers and require more targeted aid than those in the first (41).
As Yeatman observes people with a substantially reduced capacity for communication, learning or mobility may not easily translate into single clinical impairment categories. Her comments are relevant to debates that address equitable access to telecommunications services for people with disabilities and indicate some of the complexities faced by policy makers. Reliance on clinical definitions of disability alone to assess need and eligibility may omit or obscure some groups from policy considerations. Consequently, Yeatman argues for an holistic approach to disability that incorporates the complex interrelationships between people and their environments:
... a need for continuing support in one or more areas of life does not directly relate to any particular category or level of impairment, disability or handicap. The need for support arises from a complex and individual interaction between the impairment, any reduced capacity, the person's environment and personal circumstances (1996, 40).
By failing to define disability holistically using functional definitions in preference to clinical perspectives, Yeatman argues that disparity in the distribution of funds and services among people with a disability has occurred in service provision programmes and policies (Yeatman, 1996, 39-43).
The above discussion identifies confusion in definitions of disability which consequently problematise: a)policy priorities; and b) the delivery of limited resources to those that best qualify for aid. It is also significant that by using the above definition of disability (not impairment), it can be reduced by technical assistance and adapted environments. Similarly, telecommunications aids can reduce disabilities and handicaps. For example a woman with sight impairment can reduce her disability with a finger guide (raised point) on the ``5'' button on her telephone (Review of Standard Telephone Service (RSTS), 1996, 133). Finger guides are now provided on standard telephones. Arguably her handicap is removed in this instance as she is able to engage in a social role with a friend in conversation similarly to other telephone users. In this context the importance of universal service provisions becomes apparent.
Instead of assisting a person with a disability, accessible and affordable telecommunications services may remove in some instances a handicap or disability while s/he is performing certain functions. Consequently, concepts of disability are transformed from physiological impairment descriptors into environmental disadvantages that result from poor design (Newell, 1998, 151 - 168).
This section has examined various terms used to define disability. It suggests that instead of overemphasising clinical attributes of impairments, disability policy should address functional definitions of disability that identify problematic environments, such as telecommunications, which exacerbate a disability.
This section analyses the social discourses of disability and how they influence policy related to people with a disability. Essentially there are two main approaches to social theories of disability (See Fulcher, 1989; Yeatman, 1996, 7). The first approach positions people with a disability as welfare recipients in need of care. In contrast the second approach views people with disability as individuals with civil rights of access and equity which should be recognised. The first approach lays an emphasis on dependency in contrast to the second which stresses independency (Fulcher, 1989, 26). Historically, society has taken the former view, but there is evidence to suggest that a change is taking place due, in part, to changes in legislation (See Disability Services Act, 1986; Disability Discrimination Act, 1992).
The HREOC inquiry to which reference has already been made, describes an example of people with disabilities using legislation to secure their rights of access and equity to telecommunications services. Consequently, it will be argued that: a)changed material conditions, in this situation new legislation; and b) new discourses, had a mutually constitutive effect on telecommunications policy that led to changes which benefited many people with disabilities.
Theories of disability abound and are informed by the political and ideological positions of those that form them (See Fulcher, 1989, 21-41). There is general agreement that an intrinsic link exists between people with a disability and their regulation by a welfare state. What that regulatory link is or to what it should be applied is still a point of contention:
...disability is a category which is central to how welfare states regulate an increasing proportion of their citizens. In this sense and context, it is a political and social construct used to regulate an increasing proportion of their citizens. There are competing claims about this regulation and its effects. One claim is that the welfare state has been organised to ‘provide for the needy', including those with disabilities. In the US, this view is held by Stone (1984) and in Britain by Blaxter(1976), for example. In this view disability denotes ‘need', help and privilege. In contrast others claim that disability is a category of oppression...These opposing concepts are starting points for opposing theories of disability. (Fulcher, 1989, 21)
Positions that construct disability as a category of need or oppression inevitably influence policy decisions differently. The opposing positions inform the way that people with a disability are socially and politically constructed by policy makers and society in general. It is not difficult to see the relevance of social constructs in relation to the debate over universal service obligations. While obligation issues are linked to the whims of welfare provisions for the needy, there is no explicit appreciation of the individual rights of a citizen.
A number of issues interest policy makers in a welfare state as they plan to provide services, assistance and subsidies for people with disabilities. Making policy for people with disabilities requires that they be socially constructed as a group and, by administrative necessity, that they are put into a category. (Fulcher, 1989, 24; Yeatman, 1996).
Fulcher identifies three discursive practices which have informed policy makers in constructing people with disabilities. According to Fulcher disability is:
Arguably, the three discursive issues surrounding disability may determine the status and rights of people with disabilities in society. Each practice influences policy makers when defining and legislating for people with a disability. Disability is a disputed category because it describes human conditions which involve categorising the degrees of disability and deciding who is eligible for help. Fulcher identifies such questions as: is this a disability? If so, how much, how disabled? Is this person feigning disability? Is the doctor making an unbiased judgement? (Fulcher, 1989, 24). These issues undergo investigation at the point of policy and likely influence the outcome. One possible scenario is that policy makers are more sympathetic to aiding visible and/or easily diagnosed disabilities with benefits rather than those less easily proved. The ‘invisible disability' of mental illness has a long history of disputed welfare recognition (Bourke, 1996). However, Yeatman observes that people with intellectual illnesses receive a disproportionate higher level of accommodation assistance than other similar population segments of people with disabilities (1996, 40).
Disputed disability categories have interesting implications for equity issues which could arise from hypotheticals such as what telecommunications service provisions should be made for people with intellectual impairments? Decision makers face a myriad of complex value judgements when planning and legislating policies for people with disabilities.
Another aspect of disability that Fulcher observes is that disability has a feared status and therefore affects the way that it is socially constructed.(Fulcher, 1989, 25) Again this has implications for policy makers in that those working in unrelated fields from health such as telecommunications may avoid where possible the complex political and psychological issues encountered in legislating for disability.The segregation of many people with disabilities placed in institutions until 1984 (Lindsay, 1996, 14) alienated them from society and further reinforced fears and prejudices due largely to ignorance. A CTN policy adviser observed that senior Telstra management displayed uneasiness around members of the Deaf community and people in wheelchairs (pers. comm. CTNPA, 1997).
Disability has also been regarded as a personal trouble rather than a public issue as discussed in the previous section. Perhaps more so than any other current issue the growing legislative recognition of the collective rights of people with disabilities is changing their political status. (See Commonwealth/State Disability Agreements (CSDA) 1986, 1992; Disability Discrimination Act (DDA), 1992; Disability Services Act (DSA), 1986).
The above issues associated with the construction of disability - its contentious nature, feared status, and appearance as a personal trouble are acted on by a number of discourses. As a number of scholars have observed, discourses are never innocent, but are value laden and political in nature ( See Ham & Hill, 1983; Davis et al, 1990; Fulcher, 1989).
Fulcher identifies four main discourses on disability: medical, lay, charity and rights. (Fulcher, 1989, 26). Of these, the rights discourse is the most recent to evolve and holds the most relevance for this thesis. Arguably, the first three embody a worldview which constructs disability around notions of disputed degrees of impairment, feared status and perceptions of disability as a personal issue rather than a public responsibility (Fulcher, 1989, 26). All three undermine the status of people with a disability and support notions of dependency (Newell, 1998).
The medical discourse has a theme of professionalism which creates an expert who always knows what is best for the patient . To understand how the medical discourse creates the notion of the expert, it is useful to briefly consider the role of doctors in Western industrial societies and the way they achieved their social status.
Michel Foucault undertook an extensive analysis of the interrelationships of eighteenth century discourses of power, health and medicine in Power, /Knowledge: Selected Interviews and Other Writings, 1972-1977 (Foucault in Rabinow, 1991, 273-289). According to Foucault, concerns for public health were politicised and organised in Europe to a degree that had never existed before. The reasons for the more central role of health policies are essentially based on industrial economic imperatives and the need to sustain a large ``labor force'' (Foucault in Rabinow, 1991, 278). Also aligned with labour supply imperatives are related concerns of controlling rapidly growing urban populations and attention to family health. Foucault introduces the mutually constitutive effect of material conditions and discourse on policy which is a dominant theme in this thesis. Also of interest is the way in which the medical profession and related disciplines were transformed in terms of power and authority:
Medicine, as a general technique of health even more than as a service to the sick or an art of cures, assumes an increasingly important place in the administrative place in the machinery of power- a role which is constantly widened and strengthened throughout the eighteenth century (Foucault in Rabinow, 1991, 283).
One of the first ways the transformation was realised was in relation to the responsibilities placed upon families toward health. Parents and children alike were organised individually and collectively into what Foucault called the, ``medicalised and medicalizing family'' (1991, 282). Increased attention to personal hygiene, an aerated living space and the health of children informed a number of essays written throughout the century. In addition, a long campaign of inoculation and vaccination of children prepared the family to re-orient life around medical concerns.
Foucault also observes at this time that the institutionalised protection of the doctor-patient relationship occurred (1996, 282). However, it was a focus on personal, family and community hygiene which elevated the doctors' role. Civic leaders often gave them authoritative power in declaring the need for civic attention to disease breeding grounds such as, ``prisons; harbour installations and hospitals'' (283). By isolating problem areas within the urban community, the doctor became both a personal and social authority in issues of disease and accordingly was given the power to institute change by political authorities. However, Foucault insists that attention to noso-politics was not the result of a vertical policy towards health by monarchies or politicians. Rather it was both an economic imperative and a reflection of community attitudinal social change (275, 283).
The increased social status of doctors is evidenced by a number of factors. The expert status of doctors was reflected by their increased representation in the academies and learned societies; their contributions of medical knowledge to encyclopaedias; their presence as counsellors to representatives of power; their qualification to recommend authoritarian measures; and, their frequent roles as social or political reformers became increasingly evident in the late eighteenth century (282-283). Consequently, the role of doctors changed from one of personal therapist to one of social authority as an integral contributor to the health of society as a whole:
The doctor becomes the great adviser and expert, if not in the art of governing at least in that of observing, correcting, and improving the social ‘body' and maintaining it in a permanent state of health . And it is the doctor's function as hygienist, rather than his prestige as a therapist, that assures him this politically privileged position in the eighteenth century, prior to his accumulation of economic and social privileges in the nineteenth century (283-284).
From a historical setting the current medical discourse which creates the doctor as expert appears to have its social roots to attitudinal changes towards hygiene in Western societies. By creating a medical social expert, a dependent patient and society is also fashioned. In other realms where experts operate, they contribute to informing a client of issues outside the self eg lawyers and accountants. However medicine relates to personal issues that reflect and construct oneself. Therefore any perception of dependency has an impact on self-identity and positioning within society. For this reason many people with disabilities reject medical discourses which arguably have both a negative personal and social construction of dependency.
The Charity discourse defines people with disabilities as those needing help, objects of pity, personally tragic, dependent, eternal children and low achievers by ideal standards. It is centred around an institutional framework that often reaches into the corporate sector. According to Fulcher, it is descended from ‘middle class philanthropy which was a feature of the Victorian Age' (Fulcher, 1989, 28). Arguably, welfare provisions for people with disabilities have traditionally been based on medical and charity discourses of disability as they provided for the needy and disadvantaged. As will be discussed later, in 1983 Don Grimes challenged charity discourses of disability with his policy reforms to social welfare departments, although clinical medical discourses were retained - arguably for administrative necessity in the specialised welfare departments. Due to its holistic nature, it would probably require a coordinated interdepartmental effort for a rights discourse to dominate all government policy environments.
The charity discourse appears to be the predominant model in policies that are formulated in an environment which reduces state welfare provisions. Deregulation policies eventually appear to reduce the state sector, including welfare departments and will be discussed later. Arguably, the charity discourse continues to be a major threat to equitable access to services for people with disabilities. The HREOC inquiry can be described as a conflict between charity and rights discourses as will be discussed later.
The lay discourse of disability emphasises the ‘otherness' of disability in that bodies ‘disabled' are unfavourably contrasted against the ‘able-bodied' (Fulcher, 1989, 29). Arguably lay discourses are linked to issues of fear that people have of disability and the discomfort felt around perceived ‘abnormal' physical appearances.
The Rights discourse provides the most political opportunity for people with disability. It is based on principles of empowering people with disabilities and guaranteeing their right to equitable access of services enjoyed by mainstream society. It is defined by themes such as self-reliance, independence, consumer wants (rather than needs). It is concerned with issues of discrimination, exclusion oppression (Fulcher, 1989, 30; Newell, 1998). The discourse has been seminal to legislative recognition as evidenced by two major Commonwealth Acts over the last decade and a number of public awareness campaigns (See Lindsay, 1996). As Fulcher observes it is ‘overtly political' (Fulcher, 1989, 30). Discrimination against people with disabilities in relation to service provision and employment opportunities is now illegal (See DDA, 1992; DSA, 1986). However it is difficult to prosecute as the onus is on the plaintiff to prove the guilt of the defendant rather than a third party such as the police or public prosecutor to pursue the matter in the courts. Therefore the plaintiff is often required to finance the legal complaint and all the associated costs. As few people with disability are in a position to carry court costs few cases of discrimination are tried (See Lindsay, 1996, 39).
However while the rights discourse at present has resulted in questionable legal power, it is obvious that it has been successful in achieving a strengthened collective political power base which identifies with the larger claims of citizenship:
It presents an overtly political position which contrasts with the covert hierarchical politics of the other three discourses. Its themes are equality of citizenship and its strategy is one of confrontation and demand... the rights discourse is seen as the most progressive and obvious strategy for those excluded from full citizenship in modern welfare states, including those called disabled. This theme underlies most equal opportunity legislation (Fulcher, 1989, 31).
In applying these models to the current practices in Australia, Fulcher discovered that there is remarkable similarity to the construction of people with disabilities in Britain. Despite legislative change in both countries to recognise the rights of disabled citizens, an institutional hegemonic hold by the historical discourses persists. This hegemony tends to disempower disabled people (Fulcher, 1989, 31). She lists the institutional hegemonic characteristics from research published in 1986:
- poverty and dependence from inadequate benefits - indicative of individualistic charity model;
- dominance of professionals who ally with the welfare state (as employers of professionals) in the inequitable treatment of disabled people;
- people with a disability are devalued in the context of competitive values in the capitalist labour market and in the ideals of rehabilitation;
- tension surrounding dependency in capitalist societies;
- selectiveness of British authorities in deciding that some are more worthy for benefits than others- thereby creating a hierarchy in disability; (Borsay cited in Fulcher, 1989, 32)
Fulcher discovered a similar hegemony in Australia, where the medical and charity discourses have socially constructed disabled people and have placed an emphasis on dependency on experts rather than independency and self-determination. Assistance priorities have been selectively determined by professionals rather than from a recognition of individual rights:
As in Britain there is a hierarchy of disability and the welfare state responds selectively in its benefits according to the source of impairment. Impairment deriving from activity in the paid labour force and from war-related impairments have been consistently more highly rewarded than impairments acquired elsewhere. Australian welfare apparatus also responds selectively in disregarding a wide range of occupationally induced diseases. (Fulcher, 1989, 31).
These observations identify the social and practical effects which medical and charity discourses have on regulating policy for disabled people. An individual's rights are defined by the source and type of impairment instead of the rights of a citizen to access and equity in service provisions.
Arguably, one of the greatest challenges to historical discourses in Australia has come from the adoption of Wolfensburger's normalization theories by legislators. (See Yeatman, 1996; Lindsay, 13, 1996). The writings of Wolf Wolfensberger introduced the notion of normalization which is now known as social role valorization (SRV). His theories heavily influenced the deinstitutionalising programs of Governments around the world (See Wolfensberger, 1972;1985).
Essentially SRV is based on the principle that people with impairmments placed in institutions are devalued by their social and physical environments. Their self-esteem is negatively affected as well as their access to human and physical resources and rights which other citizens in a community enjoy. The negative social and physical environment continues to spiral the person into a devalued status in the community:
Devalued people will be better seen as individuals if they are not removed from the rest of the community and not grouped with other devalued people (Ziegler, 1989, 8)
Federal and State Governments were criticised for not adequately funding community services to implement the positive side of normalization- creating a social and physical environment that increases the self-worth of people (Yeatman, 1996, 17-18). Adopting normalization approaches were also seen to be politically opportunistic for Governments wishing to divest themselves of expensive institutional expenditures. However the governments attempted to address these criticisms with the funding mechanisms provided in the Commonwealth State Disability Agreements (CSDA, 1991). The CSDAs are joint arrangements between state and federal governments which demarcate responsibilities for providing services for people with disabilities. in addition they represented a joint governmental approach to ``policy, planning and funding for disability' (Yeatman, 1996, 2).
Informed by normalization theories which emphasised self-worth and social value, people with disabilities began to assert their rights as individuals. In addition government and community institutions reviewed the disempowering discourses which had informed many of their attitudes and actions toward disabled people. Normalization has been cited as a driving principle behind the reform of services:
By 1983 the scene was set for radical change to the organisation, provision and funding of disability services. A number of developments contributed to this. One of the most significant was the increasing influence in Australia, during the 1970s and 1980s, of the philosophy of ‘normalisation' which developed in Scandinavia and North America during the 1960s
Supporters of normalisation argued that people with disabilities should be assisted to establish patterns of life that were close to, or the same as those of society generally. the greater the adherence to this objective the greater the chances of enhancing the personal competence, presentation and self-image of the disabled person (Lindsay, 1996, 13)
From the above it is clear that the way people with disabilities have been constructed by social theories influences their self-esteem, community attitudes and the reasoning behind the provision of services. If people with disabilities are viewed as subservient to experts who know best then notions of independence are seriously restricted. The rights discourse informed by normalization theories constructs people with disabilities in a different way. Instead of accepting an allowed status for people with disabilities, it asserts the same status claimed by any other groups in society. However raised status can only be applied if legislation acts as guarantor of access and equity.
This section has analysed the political nature of discourses of disability. Arguably, medical, charity, lay and rights discourses are four social models that have differing effects on the status of people with a disability. Medical, charity and lay discourses emphasise an individual problematic dependence on others in contrast to rights-based models which emphasise collective rights and responsibilities of citizenship.