By Lucy Series
Independent living is often misunderstood as being about ‘life skills’, or a particular service model where support is purchased separately from housing, or imposing upon a person a life which looks ‘normal’. Decades of campaigning and scholarship tell us that this is not what independent living is about. It is – as the title of this blog so eloquently puts it – about authoring one’s own life. This right to self-determination is embedded in the right to independent living in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which reads: ‘Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’. One important determinant of being able to choose one’s place of residence, and where and with whom one lives, is ‘legal capacity’.
Legal capacity basically means one’s decisions being treated as legally binding in the usual way. So if you enter into a contract, you have to uphold your end of the bargain, and if you say no to some offer of treatment or care and support, you cannot be forced to accept it. In England and Wales, the Mental Capacity Act 2005 (MCA) says that people can exercise legal capacity only if they have ‘mental capacity’. Mental capacity means being able to understand the information relevant to a decision, to retain and use and weigh that information in order to make a decision, and being able to communicate it. Incapacity is not supposed to mean making ‘unwise decisions’, but it can be extremely difficult to tell these apart. A person should be presumed to have capacity, but if it is shown that they ‘lack capacity’ then others can make best interests decisions on their behalf. Those making best interests decisions should consider – but are not bound to choose – the least restrictive option.
The MCA is often described as being about empowerment, but ultimately it is still a tool which legislates for others to author a person’s life, in their best interests. Article 12 CRPD says that people with disabilities should be able to enjoy legal capacity on an equal basis with others and that people should be offered support to make decisions for themselves. Examples of support are wide ranging. It might involve a person being able to appoint a third party to be legally recognized as a supporter, so they can have access to the information they need to help a person make a decision for themselves and communicate that decision to others (e.g. British Columbia, a new Bill in Ireland). For people with impairments which make it hard to discern any decision at all, Bach and Kerzner have been developing an approach to legal capacity which is based upon a person’s life narrative, with those who know them best taking a leading role in interpreting it. Supported decision making projects in Sweden (doc) and South Australia have been delivering resounding results in enabling people to author their own lives.
It is increasingly thought – even amongst the judiciary – that the MCA may violate Article 12 CRPD as it offers few mechanisms which put supported decisions on a legal footing and it may also be discriminatory.
Despite this, however, lots of people are using the MCA in progressive and empowering ways, supporting a person to make decisions or making ‘best interests’ decisions which accord with the person’s own will and preference. The Court of Protection has delivered some excellent rulings in this regard, emphasizing that people with disabilities should be able to make risky or unwise decisions just like everybody else (CC v KK; A Local Authority v TZ) and asking ‘What good is it making someone safer if it merely makes them miserable?’ The ruling in Neary v Hillingdon sent out a resounding message about the importance of listening to what the person themselves wants, and honoring the relationships and lives where they thrive.
But disability campaigners and scholars need to start thinking more critically about the MCA, and start taking seriously the criticisms leveled at it from the CRPD. They need to shed arrogant assumptions that the MCA is world leading in progressive legal capacity legislation and start looking at what is happening elsewhere. Not all Court of Protection judgments are such a resounding endorsement of authoring one’s own life, and some even use ‘independent living’ as a justification to impose upon people choices which they do not want. A person’s own will and preference is an important factor in a ‘best interests’ decision, but it is not paramount.
A recently constituted House of Lords Select Committee on the MCA has heard from every single witness that whilst they think the MCA is an empowering piece of legislation, it is not well implemented and the ‘culture change’ has not happened. Let us think about what this means for a minute. If the MCA was a product on Amazon and every single review said “I bought this product because I wanted to be empowered, but when I got it home it didn’t work”, would you buy it? No. You would look around for something else.
The universal praise for the MCA may tell us something else: that the MCA is a two-faced piece of legislation. On the one hand it is committed to ‘empowerment’, ‘autonomy’ and ‘self-determination’ through clauses intended to limit loss of legal capacity and consider a person’s own views. On the other hand it is committed to paternalism, through providing a legal tool to override that person’s choices in their best interests. The concepts of ‘capacity’ and ‘best interests’ are so nebulous, fluid and open to interpretation that when we look at the MCA we see what we think ‘mental capacity’ and best interests look like. If others construct those differently we think there is a problem with their interpretation not the Act itself. It is like a Rorschach test: we project onto it what we want to see, and so everybody goes home happy, having seen different things in it. But is this ‘empowerment’, if the legislation is only as autonomy-promoting as the person operating it? What realistic recourse does a person have if they are denied the opportunity to author their own life?
About the author
Lucy Series is a research associate at Cardiff Law School. Her research interests include legal capacity and community care law. She is currently working on a project funded by the Nuffield Foundation about the Court of Protection. She writes The Small Places blog.