Glasby (2007) highlights a variety of issues which cause disabled people’s social rights to be compromised. Disabled people are less likely to be employed than non disabled people. Where disabled people are employed there income is significantly less than non disabled people. In education, disabled people are less likely to have basic qualifications and are unlikely to progress onto higher education. Housing, access to the built environment and transport also prove to be a significant barrier to the participation of disabled people in society. The segregation of disabled people into day care services and specialist services also perpetuates their exclusion. These factors all point towards a denial of the standards of living commonly enjoyed by non disabled people (Oliver, 1996).
Central to the denial of disabled people’s citizenship rights has been the medical model of disability which has informed policy and practice impacting upon every aspect of disabled people’s lives. Also referred to as the ‘individual’ model, the medical model locates disability within the individual, resulting in interventions focusing on the individual’s impairment (Oliver, 1996). As a result of this model and a ‘personal tragedy’ approach, disabled people have experienced segregation, disadvantage and a lack of choice and control. The medical model is deeply embedded in society and ideas about disability and dependency have become common sense and hard to shift (Oliver, 1990). Disabled people consequently experience discrimination and have systematically been denied the citizenship rights commonly enjoyed by non disabled citizens.
The social model of disability moves away from an individual model and draws attention to policy, practices and social and economic structures which marginalise and disable people (Handley, 2003). The social model thus presents a challenge to the medical model and locates disability within society not the individual. It is acknowledged that impairment can be accompanied by certain physical and psychological constraints but “the quality of life enjoyed by disabled citizens is determined by a society’s reaction to impairment” (Williams, 1995 cited in Dwyer, 2004:115). The term disability therefore refers to the failure of social structures to accommodate the needs of people with impairments to participate fully in mainstream society (Hahn, 1986 cited in Dwyer, 2004).
Goble (2004) argues that the key way in understanding the marginalised experience of disabled people lies in the way disabled people have been constructed as dependent, with dependency being defined as problematic. Blomberg (2003) therefore argues that the most critical issue when it comes to citizenship is that of full participation in society. The failure of social structures to accommodate disabled people and the obstacles to achieving this such as professional domination in services, lack of comprehensive civil rights legislation and lack of disabled people in positions of power results in disabled people having little influence over the issues which affect their lives. The empowerment of disabled people to have choice and control is therefore essential for their access to citizenship.
Independent living has been built upon the concept of citizenship and that disabled people should have the right to the same standards of living in society as everyone else (Blomberg, 2003). The independent living movement, in line with the social model of disability argues for equal rights and embodies the most powerful challenge to the oppression disabled people experience. When considering disabled people’s experiences alongside non disabled people, disabled people have considerably less choice and control in their lives and struggle for full and accessible citizenship (Lister, 2007). For this reason, independent living has been central to disabled peoples campaigns (Mercer, 2004). The essence of independent living is the empowerment of disabled people to exert choice and control over their lives, rejecting the passive acceptance of social care and rehabilitation as well as challenging the underlying caused of social exclusion (Goble, 2004: Hasler, 2004).
There is however often a disparity between the way in which professionals act and how disabled people view independence which causes tensions. The medicalisation of disability has lead to increasing professional power over the lives of disabled people and is still deeply engrained in health and social care settings (Glasby, 2007). Professionals, driven by welfare policy which promotes independence become locked in a cycle which in fact creates dependency by focusing on ‘curing’ disabled people. Incidentally, disability is defined using the International Classification of Impairments, Disabilities and Handicaps which focuses on individual’s impairments and deviance from ‘normal’ functioning. This results in interventions being based upon such deficits with the target being to restore as close to normal functioning as possible. Disabled people thus become passive recipients to professional decisions about ‘what is best’ regarding the services they receive (Goble, 2004). This is a significant barrier to enabling disabled people to be full citizens (Glasby, 2007).
Disabled people use the term independence “not to mean someone who can do everything for themselves, but to indicate someone who has taken control of their life and is choosing how that life is lead” (Brisenden, 1986 cited in Mercer, 2004:177). Morris (2005) describes this as ‘self determination’. Goble (2004) argues that dependency is created by policies and social systems that segregate disabled people and deny access to education, work and other opportunities. To be independent from this perspective argues for rights to ensure access to society and control rather than the capacity to wash and dress. This ‘citizenship’ approach seeks to change the relationship between disabled people and the welfare state (Glasby, 2007).
Looking to the policy context, as a result of campaigns by disabled people and their organisations, the Direct Payment Act (1996) provided the possibility for independent living and a major restructure of the organisation of welfare as the act provides the opportunity for disabled people to have choice and control over the services they use. Cash sums would be available for disabled people to purchase their own services, which has now become mandatory for local authorities (Glasby, 2007).
Analysis regarding the benefits of Direct Payments points towards greater control, choice and satisfaction with services alongside a decline in the unmet need as a result of the direct payment scheme. However there is still, over a decade after the introduction of the act, a persistently low take up rate (especially amongst those with learning difficulties) and inconsistency in the support, information and promotion of direct payments amongst local authorities. There is also still strict means testing and a lack of transparency with funding (Glasby, 2007).
Recent developments such as Individual Budgets and ‘In Control’, offer a greater deal of transparency to that of direct payments, as individuals are placed into a cost band initially. From here, the resources available are made known and the individual with support can decide how best to spend the money allocated allowing creativity and flexibility. As resources are spent more efficiently substantial amounts of money were saved as a result of the projects (Glasby, 2007).
Hasler (2004) points out the way in people with a learning difficulty encounter problems, as they have been constructed as a risk to themselves and of needing to be controlled as well as cared for, which has mounted a critique on the use of direct payments in this instance. Professionals view people with learning difficulties as ‘unsuitable’, ‘vulnerable’ and not responsible enough to arrange their own services.
The ‘Care Standards Act’ (2000) illustrates the tensions between vulnerability and independence. Anyone using personal domiciliary care is defined as a ‘vulnerable’ adult. However the act states that service users need to be enabled to make choices about their care to maintain independence. This link to vulnerability however aligns enabling control with risk and undermines the notion of independence (Hasler, 2004).
It is also important to note some of the limitations to the concept of citizenship and disabled people. The central aspect of citizenship for New Labour is ‘no rights without responsibilities, the condition being engaging in paid work. Disabled people are however notoriously excluded from the labour market which then forces them to rely on state welfare and services which relegates them to a 2nd class citizen status (Gilbert et al, 2005). This concentration on responsibility undermines disabled people’s welfare rights (Alcock, 1989). The promotion of ‘active citizenship’ also presents a problem for disabled people as they become recipients of non disabled people demonstrating active citizenship rather than being active themselves (Balloch, 2007: Gilbert at al, 2005). This maintains the second class citizenship status of disabled people.
In conclusion, it becomes apparent that although policy rhetoric focuses on the independence, rights, choice and control, ‘common sense’ ideas about disability and links to vulnerability and risk are still ‘disabling’ people. Although disabled people use the concept of citizenship to argue for equal rights and full access to mainstream society there is still a lack of recognition of its validity across the spectrum of disability.
The concept of citizenship helps us to understand the experiences of disabled people by drawing attention to the barriers faced to full participation in society in comparison to non disabled people. The majority of attention is focused on the welfare and services disabled people receive, however to achieve citizenship requires not only action in health and social care services but across the board in education, housing, transport, employment and leisure facilities (Hasler, 2004). Zarb (2003, cited in Hasler 2004) argues that the lack of action in the removal of barriers is a matter of finance as it widely regarded as ‘too expensive’ but without improvement in these other areas the achievements and progress made in health and social care settings as a result of the campaigns by disabled people will continue to be thwarted.
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