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AD HOC COMMITTEE ON
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| Documents and contributions |
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Working Group : Compilation of Elements
Contribution by |
Persons with disabilities have the right to make decisions based on their own feelings and values, and to not have their decisions interfered with by others. This is what is meant by a right to autonomy and self-determination. Some people understand autonomy to refer to a desirable quality of life that is attained when one has the freedom and the necessary resources to exercise self-determination by making affirmative choices in one's own life. Some persons with disabilities may need assistance in understanding information necessary to make a decision, or in advocating for themselves based on their decision. Similarly people without disabilities may face decisions where they need assistance. Such needs for assistance do not make the person incapable of making a decision, and do not justify taking away the person's right to make his or her own decision.
In respect of medical interventions or other types of interventions intended to correct or improve impairments, persons with disabilities have the right to decide whether an impairment is actual or only perceived and whether or not it should be corrected or improved. This right protects diversity and the right to be different, as well as autonomy and self-determination. It is also an application of the right to be free from torture and other cruel, inhuman or degrading treatment or punishment, and the right to mental and bodily integrity, in the context of disability.
Autonomy and self-determination are dependent on having sufficient access to resources so that economic and social coercion do not lead to decision-making that does not reflect the person's own values and feelings. An adequate standard of living, including community life and independent living, and access to all kinds of civil, social, economic, political, and cultural opportunities, are necessary in order that these rights not be treated as privileges for which people can bargain away their autonomy and self-determination. This is a statement of the interdependence and inter-relatedness of rights, and also a reiteration of article 22 of the Universal Declaration of Human Rights, which recognizes that economic, social and cultural rights are necessary to the free and full development of the personality.
Autonomy and self-determination are also dependent on the existence of meaningful alternatives related to the particular decision at issue. Organizations of persons with disabilities must be involved in policymaking processes to direct resources towards programs that empower persons with disabilities and create equalization of opportunities in all areas of life.
Access to information is also crucial. Without information about the possible choices, autonomy and self-determination are unjustly limited.
One way that autonomy and self-determination are deprived to persons with disabilities is involuntary detention, imprisonment or confinement. Sometimes this takes place in "treatment" facilities for the purpose of coercive interventions. It also takes place in private homes, religious temples and public institutions that do not attempt to provide treatment. Involuntary detention based on disability discriminates against disabled people in our ways of living and expression of being. Disabled people who break criminal laws should face the consequences, as long as those criminal laws are not aimed at disabled people per se and do not otherwise violate human rights.
Everyone has the right not to be subjected to forced or coerced interventions of a medical nature or otherwise, aimed at correcting, improving, or alleviating any actual or perceived impairment.
Medical, health care and social care interventions shall not be used on persons with disabilities for purposes such as coercion, intimidation, punishment, obtaining information or a confession, or for any reason based on discrimination of any kind.
Medical, health care, social care and educational interventions shall not be used on persons with disabilities that have the purpose or effect of interfering with the free and full development of the personality or freedom of thought or expression of any individual.
These rights apply without exception to all persons, including children and including persons confined or residing in any institutional facility for any reason, including criminal justice system detainees and convicted prisoners.
Persons with disabilities have the right to have access to services which are acceptable to them, and to personally authorize each service provided to them. The right to have access to a service may not be made dependent on accepting any other service (no bundling).
No person shall be detained, interned or confined involuntarily on account of actual or perceived disability.
Disabled persons who are suspected, accused or convicted of crimes shall have the benefit of all national and international standards of due process, as well as accessibility rights enumerated in this convention and the right to supportive services and rehabilitation while serving a sentence.
Persons with disabilities have the right to choose their way of life, such as where to live, with whom to live or to live alone, or to have their own families, and to the necessary financial and other support in order to effect this choice. This includes the right not to reside in an institutional facility.
Everyone, including all persons with disabilities, has the right to recognition everywhere as a person before the law, with full legal capacity.
Persons with disabilities who experience difficulty in asserting their rights, understanding information presented to them or articulating or communicating their choices have a right to be provided with advocacy assistance and other reasonable accommodation with the aim of giving effect to the person's own decisions.
Persons with disabilities and their associates have the right to have a safe place to go for respite when their social relationships become difficult. Such respite shall be provided on a voluntary basis without any coercive detention or interventions. States undertake to collaborate with organizations of persons with disabilities to establish respite centers and staff them with individuals who have experience and training in disability-affirmative support for persons experiencing crisis.
Persons with disabilities have the right to self-directed rehabilitation, support and assistance.
The right to be free from detention based on disability is a fundamental right protecting the person and cannot be limited or its deprivation justified. Imprisonment based on a discriminatory category or classification is inherently arbitrary and no procedural guarantees can make it fair, nor can any substantive standard make it anything but a punishment for being disabled or for being perceived as disabled.
Detention based on disability has no place in a world that accepts the principles of autonomy and self-determination, full inclusion and equality of citizenship, and diversity and the right to be different as fundamental to the rights of persons with disabilities.
Autonomy and self-determination require that no person with a disability is coerced into accepting treatment for an impairment, and so detention for the purpose of imposing treatment is unwarranted. Diversity and the right to be different require that persons with disabilities have the right to act freely as they choose, and live life to its fullest, without having to worry about being deprived of their liberty unless they violate a criminal law applicable to all members of society. Equality of citizenship requires that persons with disabilities have the same responsibilities and rights as other citizens and are not subject to separate and unequal standards of law enforcement and criminal justice.
In a more general sense, autonomy and self-determination tell us that paternalism is not an acceptable justification for imposing differential treatment on persons with disabilities. Diversity and the right to be different tell us that acceptance of persons with disabilities means social and attitudinal adjustments as well as greater social solidarity and interdependence. Equality of citizenship reminds us that formal equality of rights and freedoms is necessary as the first step towards full inclusion that also requires equalization of opportunities.
Concern has been expressed as to whether states will have any recourse against persons with disabilities who threaten the public safety, if detention on the basis of disability is prohibited. The simple solution to this is that states have recourse to enforcement of criminal law against all persons under their jurisdiction, including persons with disabilities. There is no need for a separate punitive and incapacitating system differentiating persons with disabilities from persons without disabilities.
For these reasons the disability convention must guarantee the right to be free from any kind of detention, internment or confinement based on actual or perceived disability.
WNUSP has proposed the following text:
Right to be free from torture and other cruel, inhuman or degrading treatment or punishment
Everyone has the right to be free from forced or coerced interventions of a medical nature or otherwise, aimed at correcting, improving, or alleviating any actual or perceived impairment.
This paragraph should be included under the right to be free from torture and other cruel, inhuman or degrading treatment or punishment, as an important application of that right in the disability context. People with disabilities of all kinds are deprived of the right to be as they are, with their disabilities, and the right to make their own decisions about whether to seek or accept any kind of treatment. This may be of special concern to people with psychosocial disabilities, people with intellectual disabilities, people with sensory disabilities, and people with HIV/AIDS. The proposed text reflects the principle of autonomy and self-determination and the principle of diversity and the right to be different.
The text has a precedent in the Supplement to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities as proposed by former Special Rapporteur Bengt Lindqvist. Please see http://www.un.org/esa/socdev/enable/disecn520024e2.htm.
Paragraph 27 of the proposed Supplement includes this provision:
States should recognize that persons with disabilities have the same right to self-determination as other citizens, including the right to accept or refuse treatment.
Paragraph 33 provides:
States should ensure that medical facilities and personnel inform people with disabilities of their right to self-determination, including the requirement of informed consent, the right to refuse treatment and the right not to comply with forced admission to institutional facilities. States should also prevent unwanted medical and related interventions and/or corrective surgeries from being imposed on persons with disabilities.
WNUSPıs text is also supported by an analysis of forced interventions under article 7 of the International Covenant on Civil and Political rights. Human rights and disability experts Eric Rosenthal and Clarence J. Sundram argue that coerced interventions are prohibited by article 7 when they cause extreme suffering or degradation, and point out various factors that contribute to the intensity of suffering and degradation of persons undergoing this experience.
Excerpt from
The Role of International Human Rights in Domestic Mental Health Legislation
Submitted to the World Health Organization
By Eric Rosenthal & Clarence J. Sundram
http://www.mdac.info/documents/NYLaw-article.doc
While the second clause of Article 7 applies only to experimental treatment, the core protection against inhuman and degrading treatment in both the ICCPR and Article 5 of the UDHR may apply more generally to coercive treatment that is potentially dangerous or degrading. MI Principle 11 states that "no treatment shall be given to a patient without his or her informed consent..." but the MI Principles create many exceptions to this protection, and they do not recognize an affirmative right to refuse treatment. It is likely that Article 7 of the ICCPR provides greater protections. The exact protections of Article 7 with regard to non-experimental treatment have not been fully clarified by the UN Human Rights Committee, but coerced treatment would meet the general definition of inhuman and degrading treatment when it causes great suffering or degradation.
A particular treatment decision may be contrary to deeply held social, medical, political or religious values held by a person with a mental disability. Coerced treatment may violate an individualıs sense of control over his or her life, health, and body. When professionals override a personıs decisions about health care, treatment or services, this may strip a person of a sense that he or she is respected by medical or other public authorities. Once a person has been subjected to involuntary treatment in a mental health facility, he or she may never again feel safe or trusting of mental health or other government services. A person who is going through a period of great mental anguish and need may be particularly sensitive to feelings of this kind.
While it may be hard to quantify the subjective feelings of humiliation and degradation caused by coercive treatment, there is no doubt that these feelings may be very intense. Article 7's protections recognize the importance of mental as well as physical suffering and the context in which that suffering occurs.
Based on these materials it can be seen that we are not dealing with a new right but instead recognizing and giving effect to an emerging norm based on non-discriminatory interpretations of an existing right in respect of which persons with disabilities experience widespread and systematic violations. The disability convention must fully respect and guarantee our right to personal mental and bodily integrity which is embodied in the prohibition against torture and other cruel, inhuman or degrading treatment or punishment. Deprivation of mental and bodily integrity is the most painful kind of deprivation of autonomy and the right to be different, because it forces the person to experience an unwanted change in him or herself, not by accident or natural evolution but by the intervention of another personıs will. Persons with disabilities, as persons, have the same inherent dignity and worth as all other human beings, and we value our mental and bodily integrity equally if not more than others. For these reasons, WNUSPıs proposed text on freedom from forced or coerced interventions should be included in the treaty, under the heading of freedom from torture and other cruel, inhuman or degrading treatment or punishment.
Direct and indirect discrimination are both covered by the standard human rights definition of discrimination contained in CERD, CEDAW, and the Inter-American Convention on the Elimination of Discrimination Against Persons with Disabilities. The protection against discrimination is a fundamental norm and is not subject to limitations. Any definition that purports to allow justification of some practices that might constitute indirect discrimination would give us a substandard treaty.
Proposed text on discrimination
Discrimination
"Discrimination on the basis of disability" means any distinction, exclusion, restriction on the ground of disability which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise of human rights and fundamental freedoms in the political, economic, social, cultural, civil, or any other field. This applies to both direct and indirect forms of discrimination.
Reports concerning provisions which are not accepted
States parties shall send to the Committee, at appropriate intervals as requested by the Committee, reports relating to substantive provisions which they did not accept at the time of ratification or subsequent notification. The Committee shall determine from time to time in respect of which provisions such reports shall be requested and the form of the reports to be provided.
Persons with disabilities shall not be subjected to any form of detention or coercion based on separate or unequal standards compared with non-disabled persons.
Persons with disabilities who are in official custody for any reason retain the right to be free from forced or coerced interventions, seclusion, restraint or any other kind of confinement or physical, mental or sexual violence based on disability. Persons with disabilities also have the accessibility rights guaranteed in this convention, the right to rehabilitation and supportive services while in custody, and the right to conditions of detention that do not have a disproportionately harsh impact on persons with disabilities.
Children with disabilities have the right to make their own decisions about personal matters consistent with their maturity as it develops from birth to adulthood.
Children with disabilities are members of families and communities and have the right to be included as their families and communities are provided with information and education about how to support the child to lead his or her own independent life.
Children with disabilities have the right to be free from forced or coerced interventions of a medical nature or otherwise, aimed at correcting, improving or alleviating any actual or perceived impairment.
Children with disabilities have the right to be protected from mental, physical and sexual violence, including behavioral interventions that may cause mental or physical suffering or impairment, in family, school and community settings.
Everyone, including all persons with disabilities, has the right to recognition everywhere as a person before the law, with full legal capacity.
Persons with disabilities who experience difficulty in asserting their rights, understanding information or in communicating, have the right to use assistants for the purpose of assisting them to understand information presented to them and to express their decisions, choices and preferences.
Everyone has the right to be free from forced or coerced interventions of a medical nature or otherwise, aimed at correcting, improving, or alleviating any actual or perceived impairment.
No person shall be detained, interned or confined involuntarily on account of actual or perceived disability.
Disabled persons who are suspected, accused or convicted of crimes shall have the benefit of all national and international standards of due process, as well as accessibility rights enumerated in this convention and the right to supportive services and rehabilitation while in custody. Disabled persons under any form of detention have the right to be free from forced or coerced interventions and from seclusion or restraint based on a disability, and the right to be free from all other forms of mental, physical and sexual violence.
Persons with disabilities have the right to choose their way of life, such as where to live, with whom to live or to live alone, or to have their own families, and to the necessary financial and other support in order to effect this choice. This includes the right not to reside in an institutional facility. Persons with disabilities have the right to an adequate standard of living including a shelter of their choice.
Persons with disabilities have the right to have access to services which are acceptable to them, and to personally authorize each service provided to them. Access to any service provided to persons with disabilities shall not be made contingent on accepting any other service.
Children with disabilities have the right to make their own decisions about personal matters consistent with their maturity as it develops from birth to adulthood.
Children with disabilities have the right to be protected from mental, physical and sexual violence, including forced or coerced interventions to correct an impairment and medical interventions to change behavior, in family, school and community settings.