How is mental disability a human rights issue?

What do we mean by “mental disability”?

Mental disability is a generic term that includes both people with mental health problems and people with intellectual disabilities:

Mental health problems: (also described as “mental illness”) refers to a broad range of mental and emotional conditions and diagnoses, such as anxiety, depression, and schizophrenia, that affect the way a person feels or behaves.
Intellectual disabilities: (also described as “learning disabilities”, “developmental disabilities”, or “mental retardation”) refers to a lifelong condition, usually present from birth or that develops before the age of 18. It is characterised by lower than average intellectual ability and limitations in learning and understanding.

Although some individuals are diagnosed with both intellectual disabilities and mental health problems, there are significant differences between these conditions. However, in many countries, both groups of people face similar problems and serious human rights abuses, such as unjustified institutionalization, stigma, social exclusion, and lack of access to education and employment. Paul Hunt, the United Nations’ Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health (“the Special Rapporteur on the Right to Health”), has described people with mental disabilities as “one of the most marginalized and vulnerable groups in all countries.” 1

What are the key human rights issues for people with mental disabilities?

Unjustified Institutionalization

A significant human rights violation facing many children and adults with mental disabilities across the world is that they are segregated in long-stay institutions such as psychiatric facilities, social care homes, and orphanages where residents are unable to exercise their most basic human rights. Conditions in such institutions are often unacceptably poor, and residents are too often at risk of abuse and neglect.

The unjustified segregation of people with mental disabilities in long-stay institutions is in itself a human rights abuse. It places severe restrictions on their rights and freedoms by barring them from access to education and employment and denying them the right to choose where and how they live and with whom they associate. Furthermore, institutionalization reinforces the stigma and prejudice towards people with mental disabilities and perpetuates the misconception that they are incapable or unworthy of participating in community life. 2

In Central and Eastern Europe and the Newly Independent States the long-stay institutions are often situated in remote, rural areas. This means that residents rarely, if at all, receive visitors, and have little or no communication with the outside world, in many cases for the rest of their lives. Numerous reports have shown that residents of such institutions are subjected to serious and sustained human rights abuses ranging from inadequate food, heating and clothing to barbaric treatment such as the unmodified (without anaesthesia or muscle relaxants) use of electro-convulsive therapy or the use of cage beds, to sexual abuse and forced sterilisations. 3

Even in those countries that have become members of the European Union, new institutions for people with mental disabilities continue to be built in spite of European policies that seek to promote the social inclusion of people with disabilities.

Social Exclusion

The severe lack of community based alternative services in many countries means that even individuals who have not been placed in long-stay institutions face social exclusion because there is little or no support to facilitate their participation in community life. Ingrained societal prejudice also perpetuates social exclusion, as people with mental disabilities are often kept at home by their relatives, who may seek to protect them from potential abuse, or wish to avoid bringing shame on the family.

Abuse of Guardianship

Both the United Nations 4 and the Council of Europe 5 have highlighted concerns about the serious human rights violations connected with guardianship. Guardianship is a system in which a court appoints a person (‘the guardian’) to make decisions on behalf of someone who has been judged to be incapable of making decisions for him or herself (the ‘ward’). In many countries, a guardian has wide-ranging power and control over many aspects of a ward’s life. For example, it is common for a ward to be unable to exercise basic civil rights such as the right to marry, vote, or work. Guardianship is also often abused to deprive a ward of his or her property or to place a ward involuntarily into an institution.

Education and Employment

People with mental disabilities face major challenges in exercising their fundamental rights to education and employment. In Central and Eastern Europe and the former Soviet Union, thousands of children with mental disabilities are excluded from the educational system on the basis of their diagnoses alone, irrespective of their abilities. Those segregated in institutions often receive no form of education at all. This denial of education leads to lifelong dependency, poverty, and social exclusion.

Without access to adequate education, people with mental disabilities have little chance of securing employment or engaging in other meaningful activities that are crucial for every person’s dignity, independence, and inclusion in community life. Another barrier to employment is the stigma attached to mental disabilities. Employers are often unwilling either to employ people with mental disabilities or to provide necessary workplace accommodations.

What is a human rights approach to mental disability?

In recent years there has been a greater awareness of the need to protect and promote the rights of people with disabilities (including people with mental disabilities), leading to the adoption of the Convention on the Rights of Persons with Disabilities ("Disability Convention") by the United Nations General Assembly in December 2006. The Disability Convention applies to people with “long-term physical, mental, intellectual or sensory impairments,” and seeks to “ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities and to promote respect for their inherent dignity”. 6 It came into force on May 3, 2008. 7

The Disability Convention states that all people with disabilities have the right to live in the community as equal citizens. This is made clear in the Disability Convention. Article 19 refers to ‘living independently and being included in the community’. It recognizes:

‘…the equal right of all persons with disabilities to live in the community, with choices equal to others and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’.

Furthermore, Parties to the Disability Convention must ensure that:

People with disabilities have the “opportunity to choose their place of residence and where and with whom they live”
People with disabilities have access to a range of community support services, “including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”
Community services and facilities for the general population are “available on an equal basis to persons with disabilities and are responsive to their needs.”

The Special Rapporteur on the Right to Health has highlighted the importance of developing a range of community-based support services, “conducive to health, dignity and inclusion” as an alternative to institutional care 8 . He emphasizes that people with mental disabilities have a right to “community integration”:

“Deriving from the right to health and other human rights, the right to community integration has general application to all persons with mental disabilities. Community integration better supports their dignity, autonomy, equality, and participation in society. It helps prevent institutionalization, which can render persons with mental disabilities vulnerable to human rights abuses and to damage their health on account of the mental burdens of segregation and isolation. Community integration is also an important strategy in breaking down stigma and discrimination against persons with mental disabilities.” 9

The Special Rapporteur points out that even countries with very limited resources can take steps to protect the right to health of people with mental disabilities such as:

Include the recognition, care, and treatment of mental disabilities in training curricula for all health personnel
Promote public campaigns against stigma and discrimination of persons with mental disabilities
Formulate modern policies and programs on mental disabilities
Support the formation of civil society groups that are representative of mental health service users and their families
Downsize psychiatric hospitals and, as far as possible, extend community care.

Did you know?

Globally, there is a high prevalence of mental health problems:

One in four people will develop a mental health problem during their lifetime. 10
One in four families has at least one member currently suffering from a mental health problem. 11
Mental health problems are present at any point in time in about 10% of the adult population. 12

A large number of children and adults with mental disabilities are institutionalized:

UNICEF estimates that at least 317,000 children with disabilities live in institutions across Central and Eastern Europe and the Commonwealth of Independent States, often for life. 13
Across Europe over 1.2 million people with disabilities are living in residential establishments for 30 people or more. 14

Human rights violations are rife in long stay residential institutions. A 2004 study of residential institutions in France, Hungary, Poland, and Romania found:

“Residents often live lives characterized by hours of inactivity, boredom and isolation.”
“Contact with family, friends and community is limited,” and “[s]taff members are frequently too low to provide habilitation and therapy.”
Practices develop "such as keeping people in bed all day or the use of cage beds to confine people" exist. 15

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