Good afternoon members of the Committee. I am honored to participate in this discussion to share Human Rights Watch’s perspectives on article 19 of the Convention on the Rights of Persons with Disabilities (CRPD)—the right of persons with disabilities to live independently and be included in the community. Over the last several years, we have addressed violations of this right in a number of places including: Croatia, Ghana, India, Indonesia, Russia, Serbia and Somaliland.
Effective implementation of article 19 is strongly interlinked with a number of other rights enshrined in the CRPD, particularly article 12 (equal recognition before the law) and article 14 (liberty and security of the person). We hope the Committee will address these inseparable aspects of the right to live independently and be included in the community in its General Comment:
- The right to legal capacity and supported decision-making;
- The right to liberty and security of the person, and the right to informed consent;
- The right to live in the community extends beyond the right to leave an institution; and
- Inclusion of persons with high-support needs.
Legal capacity
Human Rights Watch has documented many situations in which legal capacity and guardianship laws or practices prevent people with disabilities from having the opportunity to choose their place of residence, and where and with whom they live.
For example, in Croatia, persons with disabilities who have been deprived of their legal capacity can be placed and kept in institutions without their consent or any means of challenging their placement.
Vildana, 44, who has an intellectual disability and lives in an institution in Zagreb, told us: “I don’t want to live here. I want to live in a house on my own or with my mother. My mother does not allow me to live on my own.”
Ghana, Indonesia, India, Serbia and Somaliland have similar practices, where men and women with disabilities do not retain the ability to make their own choices on where to live, which impacts their right to live in the community.
To address this issue, we urge the Committee to provide guidance to governments to assist them to ensure that each individual, without exception, has the right to legal capacity and the right to receive the support they need to make their own choices, including those affecting their right to live independently and to be included in the community. Indeed, the very right to choose where and with whom to live is inextricably linked to recognizing one’s legal capacity and respect their decisions.
Right to Liberty and Informed Consent
Human Rights Watch has documented numerous instances where involuntary hospitalization and forced treatment has disrupted the right to live in the community, along with many other rights.
For example, in India, persons with psychosocial or intellectual disabilities can be institutionalized based on perceptions of their disability.
Deepali, a 46-year-old woman who is perceived as having a psychosocial disability, told us how she had a panic attack and was forcibly picked up by the police and taken to a mental hospital in Delhi:
Ten male and female cops surrounded me, started kicking me against my shin with their boots and they were laughing when they pushed me into the police van. They took my phone and purse and wouldn’t tell me why I was being picked up. …I later found out that my father had got my husband to sign my commitment papers. … They kept me sedated for two weeks.
Similar laws allow for involuntary detention and provide few meaningful chances for persons with psychosocial disabilities to challenge their detention in Croatia, Ghana, India, Serbia and Russia.
Mansur, 39, was diagnosed with psychosis and detained for 10 months in a rehabilitation center in Somaliland. He told Human Rights Watch that, “My father ordered my brother to bring me here. They told me I’m mad but I do not want to be here and I do not like to be here.”
We encourage the Committee to make specific reference to the impact involuntary hospitalization and forced treatment of persons with disabilities have on the right of persons with psychosocial disabilities to live independently and be included in the community.
Life beyond the institution
It is important to recognize that the right to live in the community is more than the right not to live in an institution—it also involves the ability to go to school, access health care, secure employment, and enjoy leisure activities on an equal basis with other people. People with disabilities may be isolated in various ways even when physically present in the community.
Human Rights Watch has documented many situations in which community living is compromised for persons with disabilities even if they live in the community.
For instance, throughout Russia many areas of the community, including public transportation services, housing and healthcare facilities, are inaccessible to people with disabilities. In some cases, the situation effectively keeps persons with disabilities largely confined to their homes. If persons with disabilities are to truly participate in all aspects of community life, these barriers need to be removed.
In Indonesia, we documented how people with psychosocial disabilities are shackled in chains, wooden stocks or even animal pens – denied interaction with the community in large part because of the lack of mental health services and widespread misconceptions about mental health.
Inclusion of persons with high support needs
Finally, we urge the Committee to enshrine the principle of leaving no one behind and provide guidance to governments on the support and assistance needed to fulfill the right of people with high support needs to live in the community. We have seen in Croatia, for example, that people with high support needs are usually the ones who spend most of their lives in an institution. Unfortunately, they are also the last people to be given an opportunity to leave. High-support need is no justification for institutionalization.The right to live independently and be included in the community is a right that every person, without exception, should enjoy and have respected.
