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World Network of Users and Survivors of Psychiatry
Position Paper for the 3rd Meeting of the Ad Hoc Committee

WNUSP supports the basic structure of the draft text, the purposes and principles stated in articles 1 and 2. WNUSP also supports international cooperation as a necessary means of achieving the aims of this treaty.

WNUSP applauds the approach taken to issues of individual self-determination as reflected in articles 9-11 and 15, in particular. Articles 9-11 support the three main elements of our own advocacy for individual self-determination: recognition of the right of people with disabilities to make our own decisions; prohibition of deprivation of liberty based on disability; and prohibition of forced interventions to correct, improve or alleviate an impairment (“forced treatment”).*

We reject any suggestion that procedural safeguards may suffice to mitigate the human rights violations consisting of deprivation of liberty based on disability or forced interventions. It is time to bring people with disabilities into full social equality and inclusion by eliminating these discriminatory and harmful practices. We cannot build an inclusive society if human rights law itself endorses discrimination or ill treatment.

In the same vein, WNUSP calls for the deletion of paragraph 3 of article 7 on guarantees of equality and non-discrimination. People with disabilities cannot and should not accept an inferior standard compared with other socially marginalized groups protected by human rights treaties. Paragraph 3, by providing a broad exception to the category of practices that might be considered discrimination, would limit the potential uses of this treaty, contrary to the mandate of the General Assembly to negotiate a “comprehensive and integral” convention. Please see the annexed paper (Annex 1) for a more complete analysis of paragraph 3.

WNUSP has made comments on the draft text and suggested changes, in addition to the deletion of paragraph 3 of article 7, mentioned above. Please see our commented version of the text (Annex 3) for details.

In addition, we would like to raise certain issues for discussion that have not yet been adequately addressed in the draft text and issues that may need special attention in national implementation and monitoring. Please see the annexed paper (Annex 2) for details.

Annex 1: Non-discrimination in the Draft Text
Annex 2: Issues for Consideration
Annex 3: WNUSP Commented Text

Annex 1
Non-discrimination in the Draft Text

References:

Working Group Draft Text,
http://www.un.org/esa/socdev/enable/rights/ahcwgreportax1.htm

International Covenant on Civil and Political Rights,
http://www.unhchr.ch/html/menu3/b/a_ccpr.htm

Human Rights Committee General Comment 18,
http://www1.umn.edu/humanrts/gencomm/hrcom18.htm

At the Working Group meeting there was considerable discussion about whether to include an "escape clause" allowing certain practices that might otherwise be considered discrimination, to be justified by a State Party.

Originally such a provision was proposed to be limited to "indirect discrimination." Some members felt that distinguishing between direct and indirect discrimination was not always feasible. Some wanted no escape clause, and some wanted an escape clause to apply to all forms of discrimination. (See the daily summaries, http://www.rightsforall.org/updates2004.php, which should provide some documentation of this.)

The end result reflected some people's understanding of a General Comment by the UN Human Rights Committee, which monitors the International Covenant on Civil and Political Rights (see below). However, a careful reading of the language shows that the provision in the draft text is of much broader scope than the General Comment, and is dangerous to all of us who are concerned about deprivation of human rights based on disability.

Consider first the language in HRC General Comment 18:

13. Finally, the Committee observes that not every differentiation of treatment will constitute discrimination, if the criteria for such differentiation are reasonable and objective and if the aim is to achieve a purpose which is legitimate under the Covenant.

This paragraph comes at the end of the General Comment, which declares that the definition of discrimination contained in the International Convention on the Elimination of All Forms of Racial Discrimination and the Convention on the Elimination of All Forms of Discrimination Against Women also applies to the other grounds of discrimination mentioned in ICCPR Article 2.**

Here is the Human Rights Committee's definition of discrimination in General Comment 18:

7. While these conventions deal only with cases of discrimination on specific grounds, the Committee believes that the term "discrimination" as used in the Covenant should be understood to imply any distinction, exclusion, restriction or preference which is based on any ground such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status, and which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights and freedoms.

Since disability is now understood to be included as part of "any other status" it is clear that the Human Rights Committee intends discrimination based on disability to be defined in the same way, and does not contemplate second-class guarantees of non-discrimination.

Consider again the language in paragraph 13 which suggests that some differential treatment might not constitute discrimination:

13. Finally, the Committee observes that not every differentiation of treatment will constitute discrimination, if the criteria for such differentiation are reasonable and objective and if the aim is to achieve a purpose which is legitimate under the Covenant.

This does not say that a practice that "has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights and freedoms" can be justified by showing that it was reasonable and necessary to achieve a legitimate aim. It merely points out that some "differentiation of treatment" will not constitute discrimination, as already defined, i.e. that it will not have "the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights and freedoms."

Compare with the draft text of the Working Group, which would write into the text of the treaty itself a limitations clause that would apply to discrimination based on disability.

From Draft Article 7, Equality and Non-discrimination:

3. Discrimination does not include a provision, criterion or practice that is objectively and demonstrably justified by the State Party by a legitimate aim and the means of achieving that aim are reasonable and necessary.

This paragraph comes after a paragraph defining discrimination in the standard way adopted by the Human Rights Committee.

The provision could be interpreted as meaning that deprivation of human rights and fundamental freedoms of people with disabilities will not be recognized as discrimination if a State Party can justify it by a legitimate aim achieved by reasonable and necessary means.

Those of us preparing this Convention know that perpetrators of discrimination have often attempted to justify deprivation of our most precious rights (such as life, liberty, mental and bodily integrity, right to vote) by devaluing the existence and humanity of people with disabilities compared with non-disabled people.

To give governments a loophole like the one presented in the draft text is simply unacceptable since it will push us backwards from rights and interpretations of rights that we already have.

Annex 2
Issues for Consideration

Institutionalization

Should the Convention define institutionalization and obligate States parties to take steps to end institutionalization of people with disabilities?

If so, institutionalization should be defined with reference to both separation from non-disabled people and deprivation of liberty and/or autonomy. Boarding schools for Deaf, blind and deafblind students, which are desired by those groups as a means of promoting acquisition of language skills and/or culture, should not be considered institutionalization.

It should be noted that institutionalization can occur in work environments (such as “sheltered workshops”) as well as residential institutions. Institutionalization can occur in small facilities as well as large ones, and in places of short-term detention where the detention is based on disability, as well as long-term facilities. Institutionalization can occur without an intentional deprivation of liberty.

Seclusion and restraint and other punitive practices

Should the Convention prohibit seclusion, restraint, aversive behavior modification, use of medical or quasi-medical interventions to control behavior, and similar types of ill treatment commonly used against persons with disabilities?

If so, it may be appropriate to add a paragraph to this effect in article 11 on freedom from torture and cruel, inhuman or degrading treatment or punishment.

Rights of children with disabilities

Should the Convention as a whole apply to children as well as adults, except for provisions dealing with rights that are understood to pertain only to adults, such as the right to vote?

If so, there are two possible approaches. Each article can specify whether it applies to adults with disabilities, children with disabilities or both. Alternatively, the article dealing with rights of children can indicate which provisions of the Convention apply to children with disabilities.

In addition, it may be wise to affirm the principle of individual autonomy as it pertains to children. One approach is as declared in article 12 of the Convention on the Rights of the Child, i.e. the freedom to state his or her views and for those views to be given due weight in accordance with the child’s age and maturity, in matters concerning the child.

Unbundling of services

Should the Convention explicitly prohibit intentional or unintentional economic coercion of persons with disabilities to accept unwanted services?

It is common to “bundle” services provided to people with disabilities, for example housing and support services or personal assistance, or social insurance and rehabilitation. This effectively deprives people with disabilities of autonomy in decision-making when they depend on a wanted service and are forced to accept an unwanted service in return.

The Convention might include provisions in both article 21 and article 23 guaranteeing to persons with disabilities the freedom to choose with respect to each service or treatment that may be provided to them, by directly prohibiting economic coercion to accept any service or treatment, or by prohibiting the practices of making provision of any service contingent on accepting any other service.

Provisions might also be included in articles 17 and 22 prohibiting schools and employers from requiring students or workers, respectively, to undergo any medical treatment or intervention to correct, improve or alleviate any impairment as a condition of attendance or job retention.

Accessibility, reasonable accommodation and economic/social/cultural rights

People with psychosocial disabilities and our allies have worked on articulating our needs in relation to accessibility and types of reasonable accommodation. More discussion is needed, and international cooperation would be valuable for this purpose. Some issues might be:

- a social and information environment that is not overly complicated and that is user-friendly and respectful towards individuals
- flexibility in scheduling of work, education or appointments
- accommodation of the episodic nature of the disability (for many people) by allowing leaves from work or school and for support to be provided as needed, with times of more intense and less intense needs
- modification of supervision, such as more or less than usual feedback
- modification of physical arrangements to allow for privacy when carrying out usual tasks
- attention should be paid to eliminating harassment and hate crimes in the work and school environment and in society as a whole

For people with psychosocial disabilities, the opportunity to work at freely chosen and accepted employment, and other opportunities for economic empowerment, are crucial to building a life of self-determination and valued participation in the community. Such opportunities are often denied to us. Too often people with psychosocial disabilities are stuck in dead-end jobs, especially in the “food, filth and filing” service sectors when they are interested in contributing to society in other ways. Programs supporting the employment of people with psychosocial disabilities can be beneficial to allow people to enter or re-enter paid employment; such programs should ensure opportunities for career development on an equal basis with others.

Some people with psychosocial disabilities are unable to work for short or long periods of time. They should not face prejudice or discrimination on account of not being able to be economically productive. Society should recognize the inherent worth and dignity of each human being, which does not depend on economic values. Social insurance and social assistance should be provided to those who need it without any onerous criteria or qualifications. Society should also respect interdependence in communities and the fact that people who are not economically productive may still be contributing as caregivers, friends and family members, artistic workers, community workers, and in other ways that have not been assigned an economic value.

An adequate standard of living should be assured for people with psychosocial disabilities, and in fulfilling this right the principle of autonomy must be respected. Institutionalization is not a legitimate means of ensuring an adequate standard of living. In providing shelter to people with disabilities, choice and equal participation in the community must be respected.

Housing is an important concern for people with psychosocial disabilities, who are often excluded from public and private housing due to discrimination. Economic accessibility of housing is a major consideration, since people with psychosocial disabilities are still among the poorest of the poor and have the highest percentages of unemployment. This could be accomplished by means such as earmarking percentages of public housing in numbers sufficient to the population that needs it, establishing a national housing policy that ensures sufficient housing to meet the needs of all people with disabilities, and ensuring that private housing does not discriminate against persons with disabilities and that reasonable accommodation is provided in the housing context.

Peer support and places of safe respite

For people with psychosocial disabilities, development of peer support networks often makes the difference between a life of disablement and a life of empowerment. Peer support, or mutual support provided by people with disabilities for one another, might be explicitly referred to in article 21(d).

The phrase “places of safe respite, for use on a voluntary basis” in article 21(d) refers to crisis hostels and similar services that people with psychosocial disabilities have found beneficial as an alternative to medically-oriented hospitalization. It is important that such services be available for use on a voluntary (noncoercive) basis, not contingent on accepting other services, and that respect for individual autonomy and choice is preserved throughout. WNUSP expects to provide more information on places of safe respite/crisis hostels during the Ad Hoc Committee meeting.

Freedom of thought

Should the Convention address freedom of thought as well as freedom of expression and opinion?

Freedom of thought is potentially broader than freedom of opinion, and article 18(2) of the ICCPR prohibits coercion that would impair a person’s freedom to have or adopt a belief of his or her choice. Some of the interventions used on people with disabilities fall into this category.

International Monitoring

People with disabilities require an effective monitoring mechanism comparable to those attached to other human rights treaties. Any committee which is charged with the responsibility of monitoring this Convention must be composed of at least a majority of persons with disabilities, with the chair being a person with a disability, and assuring representation of people with the major categories of disabilities. Family members should also be included. Members of the committee should be persons of high moral standing and competence in the human rights issues affecting people with disabilities.

Annex 3
WNUSP COMMENTS

NOTE: WNUSP additions and deletions are noted in the text and explained at the end of each article, prefaced by “WNUSP COMMENT”.

Draft Article 3

WNUSP Comment: While it may not be necessary to define “disability” or “persons with disabilities,” it is important to state in a binding part of the convention that the convention applies to people with disabilities of the major categories including people with psychosocial disabilities.

Draft Article 4

WNUSP COMMENT: It should be noted that paragraph 2 does not replicate article 18 paragraph c, and that they are complementary. Provisions requiring the involvement of people with disabilities in policymaking and programmatic action are also included in specific issue areas, in article 5(2)(d), article 6(c), and article 21(m). The Ad Hoc Committee may wish to consider whether any other issue areas require particular emphasis on the obligation to consult with people with disabilities and their representative organizations.

Draft Article 6

In order to formulate and implement appropriate policies to protect and promote the rights of persons with disabilities, States Parties should encourage the collection, analysis, and codification of statistics and information on [ DELETE: disabilities and] on the effective enjoyment of human rights by persons with disabilities. The process of collecting and maintaining this information should:...

WNUSP COMMENT: This article has been the subject of much controversy. One of our member organizations suggests that the appropriate role of governments in collection of data is to support organizations of persons with disabilities which would themselves perform this function. If the article is retained in its present form, we urge the deletion of the term “disabilities” in the chapeau, as indicated. Collection of data on disabilities, as opposed to enjoyment of human rights by people with disabilities, is more in keeping with a medical model of disability that objectifies disability and separates it from its social context. While collection of such information may be useful in some circumstances, it also has great potential for misuse, by encouraging classification of people according to their disabilities.

Draft Article 7

3. [DELETE: Discrimination does not include a provision, criterion or practice that is objectively and demonstrably justified by the State Party by a legitimate aim and the means of achieving that aim are reasonable and necessary.]

4. In order to secure the right to equality for persons with disabilities, states parties undertake to take all appropriate steps, including by legislation, to provide reasonable accommodation, defined as necessary and appropriate modification and adjustments to guarantee to persons with disabilities the enjoyment or exercise on an equal footing of all human rights and fundamental freedoms [DELETE: , unless such measures would impose a disproportionate burden].

WNUSP COMMENT: Paragraph 3 should be deleted, as argued elsewhere in more detail. Briefly, the commentary in footnote 26 is inaccurate when it states that General Comment 18 of the Human Rights Committee has included this identical language. The Human Rights Committee stated that not all “differential treatment” will constitute discrimination, if its purpose is legitimate under the ICCPR, and if “the criteria for such differentiation are reasonable and objective.” This is very different from defining discrimination as deprivation of human rights or fundamental freedoms based on disability, and then creating an exception that would allow some instances of such deprivation to continue.

Paragraph 4 should be amended to delete the phrase “unless such measures would impose a disproportionate burden,” for a similar reason. In national legislation, reasonable accommodation may be defined in ways that make it less onerous to balance the needs of people with disabilities with economic cost of our accommodations. However, if reasonable accommodation is defined as that which is necessary to ensure our enjoyment of human rights and fundamental freedoms on an equal footing with others, such language is inappropriate and represents a retreat from the standard articulated in ICCPR article 2(1) and ICESCR article 2(2), which guarantee the equal exercise of civil, political, economic, social and cultural rights without discrimination of any kind.

Draft Article 9

WNUSP COMMENT: WNUSP supports the language in paragraph b recognizing the legal capacity of all people with disabilities on an equal footing with others, and the language in paragraph c guaranteeing that any assistance provided in exercising legal capacity will not interfere with the legal capacity, rights and freedoms of the person.

We are concerned that the concept of “assistance to exercise legal capacity” may be inadvertently turned back to substituted decision-making if the fundamental nature of the freedom to make one’s own decisions is not adequately understood. We would like to see explicit recognition that assistance should never be imposed on a person who objects to it, and that the person who is being assisted retains the ultimate decision-making authority in his or her own life.

We expect to present information during the Ad Hoc Committee meeting that may help delegates to better understand this issue.

Draft Article 10

2. States Parties shall ensure that [DELETE: if persons with disabilities are deprived of their liberty, they are:

(a) treated with humanity and respect for the inherent dignity of the human person, and in a manner that takes into account the needs they have because of their disabilities;

(b) provided with adequate information in accessible formats as to the reasons for their deprivation of liberty;

(c) provided with prompt access to legal and other appropriate assistance to;

(i) challenge the lawfulness of the deprivation of their liberty before a court or other competent, independent and impartial authority (in which case, they shall be provided with a prompt decision on any such action);

(ii) seek regular review of the deprivation of their liberty;

(d) ] ADD: persons with disabilities are provided with compensation in the case of unlawful deprivation of liberty, or deprivation of liberty based on disability, contrary to this Convention.

WNUSP COMMENT: Paragraph 2(c)(i) articulates a lower standard than that found in ICCPR article 9(4) which requires the opportunity to challenge in a court the lawfulness of any official detention. The Human Rights Committee has reiterated in General Comment 8 that “court control of the detention must be available.”

The remainder of paragraph 2(a)-(c) is confusing and inadequate, considering that detention based on disability is prohibited in paragraph 1(b) and thus the focus needs to be shifted to the situations faced by persons with disabilities subject to criminal arrest and detention or other forms of detention unrelated to disability itself. Paragraph 2(c)(ii) is only relevant in situations where there is an indefinite term of detention and has been developed particularly in the context of detention based on disability. This provision should be analyzed in comparison with international human rights norms addressing detention in general, to determine whether it is necessary given the prohibition of detention based on disability.

Subparagraph a is too vague to be of much use. Reference to the “needs” of people with disabilities is unclear as to how such “needs” may be determined or who decides what is needed. Standards should be articulated for systemic accessibility of detention facilities and programs offered within them, disability-related services that must be provided in order to ensure the well-being of persons with disabilities under detention, and reasonable accommodation to cover individualized requirements in an interactive manner without forcing any person to accept an accommodation.

Subparagraph b is unobjectionable but reads oddly as the only such elaboration of accessibility rights in the context of procedural justice. The Chair’s draft text (article 14 paragraphs 4 and 5), the Bangkok draft (article 13, paragraphs 4 and 5) and the Mexican proposal (article 10) provide a basis from which to develop further work.

Draft Article 12

WNUSP COMMENT: The Ad Hoc Committee may wish to explicitly mention forced labor and economic exploitation of persons with disabilities among the categories of violence and abuse, or to include a separate article addressing this violation of human rights under the ICCPR and other conventions against slavery and forced labor.

Draft Article 14

1. Persons with disabilities, including those living in institutions, shall not be subjected to ADD: discriminatory, arbitrary or unlawful interference with their privacy, and shall have the right to the protection of the law against such interference. States Parties to this Convention shall take effective measures to protect the privacy of the home, family, correspondence and medical records of persons with disabilities and their choice to take decisions on personal matters.

WNUSP COMMENT: WNUSP urges the addition of the term “discriminatory” in paragraph 1 addressing respect and protection of privacy. Particularly in institutions, interference with privacy may be rationalized based on management considerations and thus not considered arbitrary or unlawful, but it is discriminatory because people not relegated to living in institutions are not subjected to such interference. When the particular form of institutionalization disproportionately affects people with disabilities, such practices may also constitute discrimination based on disability.

Draft Article 15

WNUSP COMMENT: WNUSP questions the use of the term “residential” in paragraph c. Residential services, as contrasted with in-home services, suggest facilities that may actually be a type of institution depriving people with disabilities of their autonomy. Such facilities should not be promoted in the name of “living independently and in the community.”

Draft Article 18

States Parties recognise the political rights of persons with disabilities, without discrimination, and undertake to:
(a) actively promote an environment in which persons with disabilities can effectively and fully participate in political and public life, directly or through freely chosen representatives, including ADD: by guaranteeing the right and opportunity of citizens with disabilities to vote and be elected, and by ensuring that voting procedures and facilities:

WNUSP COMMENT: WNUSP urges the addition of the term “by guaranteeing” in paragraph (a), to ensure that the right of universal suffrage is protected for all people with disabilities. In many countries, this right is still deprived by law, and correction is imperative. See ICCPR article 25, and also the Mexican proposal of elements for a convention, article 11, which would require states to “guarantee exercise of the right to universal and secret suffrage of all persons with disabilities.”

Draft Article 21

(j) ensure that health and rehabilitation services provided to persons with disabilities, and the sharing of their personal health or rehabilitation information, occur only after the person concerned has given their free and informed consent ADD: with respect to each service offered , and that health and rehabilitation professionals inform persons with disabilities of their relevant rights;

WNUSP COMMENTS: The addition in paragraph (j) is necessary to prevent the practice of “bundling of services” which effectively deprives people with disabilities of the right to free and informed choice and protection from unwanted interventions.

Draft Article 23

1 (c) ensure access by persons with [DELETE: severe and multiple] disabilities, and their families, living in situations of poverty to assistance from the State to cover disability related expenses (including adequate training, counselling, financial assistance and respite care), which should not become a disincentive to develop themselves;

ADD: g) ensure that autonomy is preserved in the delivery of social services, including by prohibiting the bundling of services (making provision of any service contingent on acceptance of any other service).

WNUSP COMMENT: The additional paragraph is necessary to give effect to autonomy in decision-making, promote living independently, and protect against unwanted or forced interventions.

The deletion in paragraph (c) is suggested so as not to differentiate between people according to the extent of disability, which could be used in unpredictable ways.

Draft Article 25

WNUSP COMMENT: WNUSP urges the addition of a requirement that the national implementation framework and designation of a focal point for implementation of the convention be developed in close consultation with persons with disabilities and their representative organizations, conforming to the similar provision in article 4(2) for development of policies and legislation to implement this Convention.

Footnotes:

* Protection from forced and unwanted interventions also implies the unbundling of services, so that people with disabilities have the freedom to exercise choice with respect to each service offered.

** The Human Rights Committee considers that the grounds of discrimination enumerated in Article 2 apply to both Article 2, which deals with rights guaranteed by the ICCPR itself, and also to Article 26, which "provides in itself an autonomous right" to equality before the law and equal protection of the law without discrimination, and "prohibits discrimination in law or in fact in any field regulated and protected by public authorities."