Human Rights

Turning the personal into the legal – Alison Tarrant

Every undergraduate at a law school in the UK will be aware of the difficulties of drafting legislation in the British tradition. Statute in England and Wales aims to be definitive, expressing complex ideas in a way that eliminates confusion but remains comprehensible. Even simple rules can become complicated when they are set down in writing in such a way that incorrect interpretations are removed.

The notion of drafting a legal right to ‘independent living’ has recently been raised again by disabled people in the UK, following a High Court (and now Court of Appeal) case in which this phrase was under discussion (R (Davey) v Oxfordshire County Council). Independent living is a concept that was developed by the disabled people’s movement (both in the UK and internationally). It refers to the ability and opportunity for disabled people to have a full and free life, in the community, participating in ordinary activities (having a job, having a home, having a family) alongside and on an equal basis with other people. If that were to appear in statute, how could it be expressed?

My PhD research examines how the idea of independent living is translated into policy and law in the UK, and considers whether the models found in policy and law are the same as that produced by the disabled people’s movement. Looking at a number of academic, discussion and informal texts produced by the disabled people’s movement I was struck again by the richness of the concept of independent living, and how difficult it is to render it into a set of legal principles. When independent living is talked about, people tend to use the phrase ‘choice and control’ to refer to the importance of self-determination. But what exactly is meant by those ideas? For disabled people choice is (among other things) choice over one’s own life and the decisions one makes, over the support people need to live that life and who provides that support. So when each idea integral to independent living is taken in turn – choice, control, inclusion, participation, equality, community life (to name but a few), expressing them in legal terms without losing that richness (or meaning something else) is a complicated process.

A form of independent living is protected as a right under Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Currently, that right is intended to be covered in UK law (at least in part) by the duties to promote a person’s wellbeing that form a core part of both the Care Act 2014 (in England) and the Social Services and Well-being (Wales) Act 2014 (in Wales). The difficulty that the Davey case highlighted is that people understand different things by independent living (and in particular by independence). For disabled people, the ‘independence’ in independent living is about self-determination. But independence also means ‘self-reliance’ or living by oneself. What I’m finding in my PhD is that those ideas tend to get conflated. For example, paragraph 1.19 of the guidance under the Care Act 2014 says:

“The wellbeing principle is intended to cover the key components of independent living, as expressed in the UN Convention on the Rights of People with Disabilities (in particular, Article 19 of the Convention). Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act.”

That seems to mean two different things: ‘Independent living’ covers the idea of self-determination, but ‘living as independently as possible for as long as possible’ suggests instead the idea of self-reliance, or not needing support – so different ideas are expressed in the same language.

Following the Davey case, it seems that some clearer and more emphatic answer is needed if it is considered desirable to bring independent living – as it is understood by the disabled people’s movement – more fully into UK legislation. Independent living is, essentially, about nothing less than a disabled person’s quality of life. But independence can mean any number of things. Enshrining something so personal and fundamental in statute – particularly when there are different understandings of its central vocabulary – is a very particular legal challenge. Governments (in both Westminster and Cardiff) have not suggested that they are likely to take this challenge up. But if they do, it will be fascinating to see how it is attempted.