A neglected human rights crisis: persons with intellectual disabilities are still stigmatised and excluded[14/09/09] People with intellectual disabilities tend to be among the most marginalised. Even today their treatment is clearly inhuman in country after country, even in Europe. They have limited possibilities to make themselves heard and this has contributed to making their situation a hidden human rights crisis. It is time for political decision makers to stop ignoring these vulnerable citizens.
Before policies are designed, it is necessary to be clear about different kinds of disabilities and apply the relevant terminology. A distinction is necessary between persons with psychiatric problems (e.g. schizophrenia and bipolar disorder) and those with intellectual disabilities (e.g. a limitation caused by, among others, Down’s syndrome).
Though there are some people with intellectual disabilities who also have mental health problems, the two kinds of impairment are different; they have different causes and effects and, therefore, define different needs.
Though persons with any of these disabilities suffer human rights abuses, I am focusing here on those with intellectual disabilities. What is common for them is a reduced level of intellectual functioning which may affect learning and language capacity as well as social skills.
It is, however, stressed by experts on disability and health that the degree of impairment differs greatly between individuals and that generalisations should therefore be avoided. The response has to be individual.
The key point is that persons with intellectual disabilities, as for other human beings, are entitled to basic human rights and fundamental freedoms. This was also the simple request formulated at a remarkable WHO conference in Montreal five years ago. Among the participants were persons with intellectual disabilities, their representatives, families, service providers and other specialists1.
The adopted “Montreal Declaration on Intellectual Disabilities” made points which should not have to be raised, but had remained ignored until then and, in fact, are still not taken seriously enough.
The declaration called upon governments to implement the agreed human rights norms for persons with intellectual disabilities; to consult with them on relevant laws, policies and plans; and to take steps to ensure their full inclusion and right to participate in society.
Furthermore, it asked governments to allocate sufficient resources and to provide the necessary support to persons with intellectual disabilities and their families; to strengthen their organisations; and to develop education, training and information programs for them.
These proposals are realised only to a limited extent. During missions to Council of Europe member states I have had to conclude that persons with intellectual disabilities are still stigmatised and marginalised; that they are rarely consulted or even listened to; that a great number of them continue to be kept in old-style, inhuman institutions; and that moves to provide housing and other services in community-based settings have met obstacles and been delayed.
Conditions in some of the “social care homes” are appalling in many countries across Europe. In these segregated institutions very little, if any, rehabilitation is provided. Not infrequently, persons with intellectual disabilities are placed together with persons having psychiatric problems and unnecessarily given sedatives against their will. They are in some cases deprived of their liberty and treated as if they were dangerous.
Many are cut off from the outside world. Intellectual disabilities – like other disabilities – carry a stigma, and many people have been abandoned by their families through shame and lack of alternatives.
Staff at these institutions are almost always underpaid. However, I have met many dedicated and caring employees who try to do their very best with extremely limited budgets. Almost without exception they stress the need for more political support and resources at a more reasonable level. Though many governments have adopted Plans of Action in this field, these have not been sufficiently funded. Many have also not been monitored appropriately, so that plans often drop out of political attention and there is no follow-through.
The call for de-institutionalisation has, however, not gone unheard. In Albania, for instance, I noticed that the process of moving persons to community and family-based housing had already had some satisfactory results. In the “former Yugoslav Republic of Macedonia” an ambitious strategy was adopted, and strong efforts were also being made in Serbia – though some families were unable to receive their relatives back home.
More efforts are obviously needed to prepare such moves and to develop adequate services at the local level – in consultation with organisations protecting persons with disabilities. It has to be recognised that life in the broader community may not be easy, even for those who have not been heavily institutionalised. Prejudices against persons with intellectual disabilities are widespread.
Some progress has been made in the case of children in the process of de-institutionalisation, therapy and rehabilitation. The infamous collective homes for disadvantaged children are being slowly phased out, in eastern European countries as well, where they were common. Every European government has recognised that such institutions are not good for children.
However, it has also been learnt that closure of these homes must be done with some care to avoid institutionalised children being further damaged. Furthermore, there is a need to take measures to create alternatives, which include efforts to build support to families, to establish a child-friendly foster care system and to monitor their functioning.
In spite of some progress during recent years for the rights of the child
in general, too little is done to ensure that children who show symptoms
of intellectual disability are given sufficient attention, care and
support. Efforts to diagnose problems at an early stage in order to
facilitate early intervention are not given sufficient priority.
1. The meeting was organised by WHO and Pan-American Health
Organisation, 5-6 October 2004; The declaration can be found on
This Viewpoint can be re-published in newspapers or on the internet without our prior consent, provided that the text is not modified and the original source is indicated in the following way: "Also available at the Commissioner's website at www.commissioner.coe.int"