A right to Independent Living By Gerry Zarb  courtesy of SPECTRUM

This article looks at the significance of Independent Living to social inclusion, the links between Independent Living and the Social Model of Disability, and the barriers to Independent Living that Disabled People face. It also outlines the prospects for achieving legally enforceable rights to Independent Living for all Disabled People.

Why is Independent Living a rights issue?

The concept of Independent Living is a very simple one, and mirrors the essential principles of the Social Model. Basically, Independent Living means Disabled People having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. Any barriers to Independent Living can therefore be viewed as having a direct bearing on Disabled People’s freedom to exercise their human and civil rights. In other words, full participation and inclusion can and must be built on the foundation of Independent Living.

The essential principle of Independent Living – that Disabled People should have control over their own lives – was also central to the Social Model solutions to end exclusion and segregation originally proposed by the Union of the Physically Impaired Against Segregation (UPIAS) in the Fundamental Principles of Disability. Similarly, there have always been strong links between the political organisation of the Disability Movement, its re-definition of the ‘problem’ of disability and the collective challenge to discrimination.

But, there is little understanding (outside of the movement itself) however that Independent Living could, or should be, established as a basic universal human or civil right. Even in the UK where there has been considerable expansion in availability of resources like direct payments, access to Independent Living is still essentially granted on a discretionary, rather than mandatory basis. There are also considerable restrictions on both the levels of resources people can receive, and on the ways in which they are allowed to use these resources.

One of the main reasons for these restrictions is that removal of all of the barriers to Disabled People’s full social and economic participation requires practical action across a variety of social and economic sectors such as education, transport and employment. Public support systems on the other hand typically have great difficulty linking all of these actions together and, instead, tend to have different administrative functions to deal with them separately. So, for example, Disabled People might be eligible to receive services to enable them to access personal assistance at home, but not at work. Similarly, assistance with travel might be available for certain activities (going to school or to the shops, for example), but not for participation in social or leisure activities.

This almost universal problem is not just about the inefficiency of public support systems. More important still is the issue of controlling public expenditure and the negative impact this has on older and Disabled People. Put crudely, removing all of the barriers to Disabled People’s full social and economic participation is considered to be simply too expensive when compared to meeting the costs of other social and economic priorities.

Establishing Independent Living as a human or civil rights will of course mean much more than simply removing the barriers in existing support systems – although that objective remains absolutely crucial. Ultimately, even more fundamental rights of citizenship would need to be established in order to invert (or subvert) existing common sense understanding of Disabled People’s excluded and segregated position in society. The problematic nature of this challenge can be illustrated by consideration of how the concept of rights to Independent Living might compare to existing rights of citizenship, as these are commonly understood.

Existing debates about civil rights imply an important distinction between what might be called ‘essential’ and ‘conditional’ rights. Essential (or immutable) rights are those that relate to barriers which no reasonable person could view as acceptable as a normal condition of citizenship (such as the freedom to develop social relationships, and engage in family life). Conditional rights on the other hand relate to barriers which, potentially, all citizens might face at some point – albeit not necessarily as a consequence of disabling social structures, institutions, and attitudes. Examples include the restricted freedom of choice over type or location of housing or financial insecurity.

However, in reality, it is probably fair to say that very few rights of citizenship are unconditional in the sense that they are associated with guaranteed material outcomes. For example, the Human Rights Act 1998 states that all citizens have the right to work but in practice that only confers a right of opportunity to work (not a guarantee that work will always be available). In the context of the right to independent living, the implication is that there might be a distinction to be made between rights to services, resources and other entitlements that enable equality of opportunity and equality of access and those that would, if enforced, guarantee certain material outcomes.

People who are not convinced about the need for a right to Independent Living might argue that, by advocating the social model of disability, we sometimes stray over the line between equality of opportunity and guaranteed outcomes by advocating complete removal of barriers over and above those faced by all citizens. But, in some cases guaranteed material outcomes are essential precisely because of the fact that, without them, Disabled People cannot have equality of opportunity or access. Obviously we could argue that things like personal assistance, facilitated decision making and the removal of material access barriers fall in to this category. But something like the right to a completely secure living environment might be less clear-cut on the basis that, arguably, this is not something that any citizen can be guaranteed.

Such equivocation is potentially very dangerous as it opens up the possibility of Independent Living being seen as a conditional rather than an essential right of citizenship. Full inclusion cannot be achieved without the level playing field that establishing a right to Independent Living would create.



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