The Right to Decide
Liberty and autonomy are cornerstones of modern society. They are also core to personhood and human flourishing. However, a large portion of the population is denied the right to make decisions on the basis of cognitive disability. People with intellectual disabilities are frequently put under guardianship or subject to denial of decision-making under laws such as the England and Wales Mental Capacity Act 2005. People with mental health disabilities are routinely detained and forcibly treated. People with dementia and Alzheimer’s are often kept in locked facilities and have been denied both informal daily decision-making, as well as longer term choices about their care and finances.
Some argue that cognitive disabilities is a legitimate basis for an individual to be denied the right to make decisions. They argue that, intellectual disability, mental health disability, acquired brain injury, dementia, and other forms of cognitive disability, inherently include some form of cognitive impairment and therefore individuals affected by such disabilities can legitimately have their decision making removed. While, at first blush, this may seem like a sound argument, it fails to take into consideration a number of key issues.
This argument assumes that cognition plays a key role in decision-making. Research is emerging that challenges this notion. In fact, emotion and instincts appear to play a large role in decision-making and cognition may play a much smaller role than is commonly believed. Therefore, even if you accept the argument that people with cognitive disabilities are inherently lacking cognition, this fact alone would not necessarily make an individual a poorer decision-maker than any other person.
Even if it could be shown that cognition is central to decision-making, the above argument fails to consider that people with cognitive disabilities may not have a cognitive disability that affects cognition or impairs decision-making. It also fails to recognise that people without cognitive disabilities may very well have decision-making impairments for a variety of environmental, social, medical, and other reasons. In this way, a blanket assumption that people with a cognitive disability may be poor decision-makers, or should be subject to a test to prove that they are not poor decision-makers, is both under and over inclusive. It makes unfair assumptions about these people and fails to consider all those without cognitive disabilities that may need decision-making support.
Finally, the argument presents a challenge to the human right to legal capacity. In 1966, the International Covenant of Civil and Political Rights was ratified by the United Nations General Assembly. It creates an individual right to equal recognition before the law (Article 16). Forty years later, in 2006, the Convention on the Rights of Persons with Disabilities was ratified. It specifically enumerates the right to equal recognition before the law as including a right to legal capacity. It makes it clear that people with disabilities have a right to legal capacity – the legal recognition of an individual’s decision-making – on an equal basis with others in all areas of life (Article 12). This applies to people with cognitive disabilities as well as physical disabilities. At a minimum, this requires that where an individual’s legal capacity is denied, it must be done on an equal basis for people with and without disabilities. This includes an equal basis in both purpose and effect, in line with the definition of discrimination in Article 5 of the same convention. This means that any denial of legal capacity has to be both disability neutral in its purpose and cannot have the unequal affect of disproportionately being applied to people with disabilities.
An individual’s personality is developed through the decisions that she or he makes on a daily basis. Our role in society is shaped by where our decision-making power lies. For these reasons, and many others, liberty and autonomy have been upheld as the foundations of law and government. We have had painful history lessons resulting from the denial of the right to decide – liberty and autonomy – to minority groups such women, people of colour, and religious minorities. History is repeating itself through the on-going denial of these rights to people with cognitive disabilities. Law and policy reform in this area may not always be easy, but – for the sake of equality – it is time to try.
Read Anna Arstein-Kerslake’s book: Restoring Voice to People with Cognitive Disabilities.