Choices and rights, and the right to make right choices

Scope, which funds Disability Now, has announced some changes to, and closures of its residential care services. While this reflects a vision to show society the way to inclusion and greater independence, Jenny Morris points out the dichotomies at the heart of the moves.

A barrage of contradictory reactions have greeted Scope’s announcement that it is to close or ‘change significantly’ a third of its residential homes during the next three years. On the one hand, it is criticised for not going far enough in closing such homes. On the other hand, it is lambasted for making this decision without involving the people whose lives will be profoundly affected by it.

Yet it is this lack of involvement which illustrates how right the decision is. The way residential provision is organised (and funded) sets up an unequal power relationship and we have to confront the fact that it is this unequal power relationship which is yielded in order to make the decision to close the homes. If Scope seeks to be “true to the world we want to create” (as it says in its Strategic Direction 2013) it has to stop providing the kind of services which belong to the old world of segregation.

At the same time, it is important to confront the inevitable contradiction at the heart of Scope’s announcement. The organisation is motivated by the best of reasons – to promote disabled people’s right to autonomy, to self-determination, but the decision-making process itself denies such a right.

Crucially, we need to recognise that laudable aims do not necessarily lead to good outcomes. The parents who campaigned for education for children with cerebral palsy in the 1950s would have had little disagreement with Scope’s current vision. But whereas in the 1950s schools specifically for disabled children were seen as a means of achieving rights to an education, today Scope is criticised for running such schools.

Today, the organisation is criticised for not being run by disabled people. Yet its beginnings are to be found in parents’ dissatisfaction with the way disability organisations of the 1950s were dominated by professionals and were mainly concerned with research rather than disabled people’s opportunities.

While we may support the values behind Scope’s current decision, we cannot trust the outcome – particularly because there are two major barriers in the way of good outcomes for the individuals involved.

One is the context in which the changes are being made. As Scope itself points out, there is a social care crisis which currently means that almost 40 per cent of disabled people receiving social care support are not having their basic needs met including eating, washing, dressing or getting out of the house. And things are set to get worse. There is a very real danger that people will experience a reduction in the level of support they receive – being confined within the four walls of ‘independent’ housing with the bare minimum of support is not the outcome which anyone would want.

The second barrier is a stubborn lack of understanding about what ‘independent living’ means. It is not about living on your own, or about ‘doing things for yourself’. There is nothing more insulting to disabled people than to find that words like independence, choice and control are used as a disguise for the withdrawal of services.

Real independent living – as reflected in the UN Convention on the Rights of Persons with Disabilities – is about full citizenship, and is most fundamentally about self-determination. You cannot have self-determination if you cannot decide where you live, who you live with, and who provides you with daily living support. Self-determination – autonomy – is a fundamental human right. The segregation and exclusion currently faced by many disabled people is a direct result of others making decisions on their behalf.

Many of Scope’s service users have significant communication impairments and this can be an additional barrier to self-determination. If you do not have people in your life who understand how you communicate your preferences, then you cannot get anywhere near having self-determination. If good outcomes are to be achieved by the people affected by the closures, the housing and support which replaces the current residential provision has to be as a result of the choices made by them. And I did mean to say “achieved by the people affected” and not “on behalf of”.

The contradiction at the heart of Scope’s decision about its residential services means the decision is both right and wrong and at the same time, the only decision that could be made. This contradiction will only be resolved if what is put in place is underpinned by self-determination. And this goal has to be pursued for everyone.

Anyone can express a preference, whatever their level of communication or cognitive impairment – the responsibility is on us to find ways of understanding those preferences. Unless this fundamental human right is realised, the outcomes of today’s decisions will only be criticised in the same way that the outcomes of the decisions of 50 years are today.

Read Jenny Morris’s blog

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