Fundamental human rights have been protected globally for more than 70 years. So why, asks Simon Jarrett, are the rights of people with learning disabilities proving so problematic?
The purpose of rights is to protect and to empower people – to protect them from harm, such as violence or starvation, and to empower them to live good lives through freedom and opportunity.
There are therefore rights that confer “freedom from” and those that provide “freedom to”. Freedom from rights tend to protect individuals while freedom to rights tend to be enabling, according liberties to people that can carry risks. The fact that these two forms of rights can be contradictory – to achieve personal realisation, a person may sometimes have to shed some of their protective rights to employ their right to take risks – is at the heart of the struggle many people with learning disabilities experience in exercising their rights to live the lives they wish to live. However, as several contributors to this issue eloquently attest, other factors underlie the difficulties experienced by people with learning disabilities concerning their rights.
For Simon Duffy (page 10), human rights are not in themselves enough; they require inclusive communities to enable full and equal citizenship. Sally Warren and Jo Giles (pages 22-23) talk about the dissipation of rights in certain cultures and environments to the point where people struggle to retain them. Clare Palmer and Virginia Bovell (opposite page) attest to the difficulties of applying a universal set of rights (particularly freedom to rights) to people with the most profound disabilities. Political theorist Raymond Geuss (2001) has questioned the effectiveness and usefulness of documents such as the 1948 United Nations’ Universal Declaration of Human Rights and the 1975 Declaration of the Rights of Disabled Persons. Unless such rights are enforceable, with an effective method for enforcement, argues Geuss, they are only an expression of what we regard as desirable, a good idea that we would like to see happen.
“While rights are necessary, they are not sufficient to guarantee inclusion, protection and equality “
Worse, he suggests, such declarations can be positively harmful, creating an illusion of a world in which rights are respected. For the most powerless and isolated, the world is no such thing but, for those of us who are more powerful and connected, the illusion of rights for all is psychologically attractive and comforting.
Who counts as a person?
Where rights apply to “all people”, the question of what constitutes a “person” is paramount. The French Revolution’s 1789 Declaration of the Rights of Man did not include women. America’s Declaration of Independence in 1776 declared the equality of all “men” but this did not include black slaves. In both cases, women and slaves were not seen as fully human.
Today, questions around the full personhood of people with learning disabilities persist. Here in the UK, however much it is claimed that rights apply to all, enduring practices such as incarceration in assessment and treatment centres with little or no legal recourse, denial of the right to family life, education and work, inferior levels of health treatment, and abuse even within community-based services demonstrate that universal rights frameworks can be of little value if people are perceived as lacking full personhood. This is exemplified in the name of the movement campaigning to release people locked up in “specialist” institutions – #HumanToo.
The often unconsciously held belief that people with learning disabilities are not fully human derives in part from our notion of mental capacity. If we argue that a person does not fully belong because they lack the ability to reason, or read or write, or live independently, we are assigning them to a lower level of personhood than the rest of society. Rather than society adapting to whatever characteristics particular humans might have, we construct a society that excludes and withholds rights from people who lack certain “essential” capacities. None of this is to say that rights have no place in the lives of people with learning disabilities. Indeed, they are essential in modern societies where, without them, the risks of discrimination and abuse are extremely high.
However, rights must be enforceable and relate to real lives rather than be illusory ideas about people and the world in which they live. Moreover, it is important to remember that, while rights are necessary, they are not sufficient to guarantee inclusion, protection and equality. To reshape society, there must also be a change in social attitudes that creates a culture of interdependence rather than simple independence. Inclusion is based on but extends far beyond a set of rights.
Its starting point is the individual, their humanness, their right to belong and the adjustments and connections that can be made around them to enable belonging to exist.
