Regional Workshop towards a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities
Bangkok, Thailand, 14-17 October 2003

Contribution by WNUSP

(World Network of Users and Survivors of Psychiatry)

Principal issues in drafting the convention

1. a)      The convention should not allow restrictions on self-determination.
2. b)     The convention should not separate out psychiatric/psychosocial disability from other disabilities or mental health from other health issues.
3. c)     We need specific protection for self-determination, no internment based on disability, no imposition of unwanted medical interventions, no conditioning of services on acceptance of obligations with respect to other services (the unbundling of services).
4. d)    All articles should be written in language that is valid cross-disability.

Specific recommendations for the Bangkok October 2003 meeting

Preamble

1)      MI Principles should not be included in the preamble, because it does not have the support of the representative organizations of the women and men whose human rights it is supposed to protect and because it is an outdated medical model instrument that supports human rights violations.  It removes self-determination – a principle behind the Bangkok recommendations – and is based on paternalistic welfare approaches rather than rights.

Principles and objectives

2)      The convention’s supremacy over pre-existing instruments should be established so that conflicting interpretations can be avoided.   Rights articulated in the convention should not be susceptible of loopholes or legalistic interpretations that defeat their spirit and purpose.

Definitions and scope

3)      We agree with the approach to the definition of disability in paragraph 16 of the Bangkok recommendations.  Definition of disability should not imply that impairment is objectively valid or a manifestation of physical pathology; impairment may be entirely socially constructed – impairment as well as disability may be perceived.  Disability may also exist without any impairment.   Episodic impairment must be also be included.

4)      Use the term “psychosocial” as a parallel to “intellectual,” “sensory,” etc., rather than “psychiatric”.  The definition is not necessarily intended to reflect women’s, men’s, girls’ or boys’ personal and group identities. 

5)      We agree with a definition of access incorporating the concept of liberty, as proposed by the ESCAP meeting of women with disabilities.

Guarantees of equality and non-discrimination

6)      Users and survivors of psychiatry identify a greater need for strong guarantees of protection against intentional discrimination, in comparison with other groups of people with disabilities.  This should be taken into consideration in ensuring that all forms of discrimination are adequately dealt with in the convention.

7)      The use of coercive public health powers based on disability should be understood to constitute discrimination.

8)      Positive measures to guarantee the rights of people with disabilities should not be considered discrimination against non-disabled people.   However, people with disabilities should not be prevented from claiming that positive measures intended to guarantee our rights actually have a discriminatory effect, for example by perpetuating segregation or stereotypes.

9)      Positive measures should be dealt with in a human rights framework, as being necessary to fulfill rights.  This might fit better under general state obligations, rather than under equality and non-discrimination.   Consider reference to UDHR article 22, which connects economic, social and cultural rights with dignity and the free development of the personality  - this supports our view that self-determination cannot legitimately be deprived in the name of fulfilling economic, social and cultural rights.  It is a distortion of those rights to use them to justify coercion or deprivation of other rights.

10)  The concept of liberty, as well as being incorporated into access, should also be incorporated into positive measures.  Positive measures could be seen as a means to achieve access, as defined by the ESCAP meeting of women with disabilities.

General state obligations

11)  Organizations of women, men, girls and boys with disabilities need to be assured priority over any other interested parties in all consultative processes on disability.

12)  Survivor assistance should be included under state obligations, in keeping with proposed UN guidelines on state responsibility for reparations (see UN Doc. E/CN.4/2000/62, 18 January 2000).

Specific human rights guarantees

A. Forced interventions and involuntary internment

13)  Prohibitions of forced interventions and involuntary internment based in whole or in part on disability should be absolute and not subject to any restrictions, limitations, or procedural analysis.

14)  Forced interventions should be prohibited whether for the purposes of treatment or otherwise.  Consider using language that tracks the prohibited purposes of the UN Convention Against Torture and forbids medical interventions or interventions related to health or social care against people with disabilities for those purposes, in addition to a general prohibition of forced/coerced/unwanted medical or related interventions and recognition of the right to accept or refuse treatment.  The person’s own expressed wishes must be determinative.  The guarantees against forced interventions should be clearly an application of the right to be free from torture and other ill treatment and the right to bodily and mental integrity, so that other treaty monitoring bodies which interpret these rights may accept the provisions as guidance.

15)  Forced interventions of a medical, health or social care nature are not a permissible response to conduct that violates others’ rights or that violates any laws.  Such interventions should be off-limits to law enforcement and criminal justice personnel, as is other conduct constituting torture or other cruel, inhuman or degrading treatment or punishment.

16)  Involuntary internment and institutionalization are overlapping categories.   Institutionalization usually refers to living arrangements that deprive a woman, man, girl or boy of self-determination or of access to family and community, while involuntary internment is an intentional restriction of physical liberty that may be done for purposes not amounting to housing or living arrangements.  Both of these may be accomplished by various means including legal coercion, physical force, physical barriers, deprivation of mobility assistance, intimidation, economic coercion and social coercion.   Institutionalization needs to be defined if the term is used, and in any case restrictions of liberty for short periods and not intended as housing or living arrangements need to be prohibited as well as residential institutionalization.   Involuntary institutionalization that severely restricts autonomy in daily life should be considered a slavery-like practice. 

17)  Prohibition of involuntary internment or confinement on account of disability should be stated clearly, and should be applicable to all forms of such internment or confinement whether done under public or private auspices, including confinement in places of worship and private homes.

B. Equal treatment in legal proceedings

18)  In the criminal justice context, no one should be subjected to extra penalties, or to separate standards and processes in the determination of culpability, because of a disability.  In addition, reasonable accommodation should be provided from investigation and arrest through trial and imprisonment.  Reasonable accommodation may not be used to deprive the person of any rights or imposed against the person’s will.

19)  Parents with disabilities should not be subjected to discrimination in retaining custody of their children and other parental rights and responsibilities.

C. Right to access

20)  Rights to access need to include access to societal structures and processes as indicated in the definition of access proposed by the women’s meeting (not adequately covered by the distinct categories of physical environment and information and communications).  If specific types of accessibility are listed, cognitive simplicity and social ease of interactions including respectful communications should be included.

D. Rights to self-determination and independent living

21)  No adult woman or man should be deprived of the right to assert legal rights in his or her own behalf, or to make his or her own decisions in matters affecting himself or herself.  Assistance in advocacy should be provided without depriving the person of rights.  Self-determination of girls and boys needs to be addressed as well.  See our additional materials on the right to self-determination (in progress).

22)  Right to independent living should be defined in terms of access and self-determination and should exclude contingent services, i.e. conditioning of services on acceptance of obligations with respect to other services.

E. Right of access to basic economic resources/ right to survival

23)  Right of access to basic economic resources and right to survival should exclude institutionalization or contingent services, i.e. conditioning of services on acceptance of obligations with respect to other services, as means of fulfilling or guaranteeing those rights.

24)  Freedom from eugenics-related practices should be addressed in the convention, as part of the right to survival.  This is related to the “right to be different” identified by the UNESCO Declaration on Race and Racial Prejudice and also asserted by women and men with disabilities.  It would encompass the collective right to not be genetically engineered out of existence, and the individual right to not be killed or be forced to undergo violent medical practices aimed at eliminating disability.

F. Family and community support

25)  Family support should include educating families about self-determination of women, men, girls and boys with disabilities, disability cultural issues and rights.

26)  Right to rehabilitation, including community-based services should exclude contingent services, i.e. conditioning of services on acceptance of obligations with respect to other services.  Peer support and other non-pathologizing support should be made widely available throughout society, including in rural areas and to people who cannot afford to pay for services.

G. Early child intervention and rights of girls and boys with disabilities

27)  Early child identification and early intervention is problematic where identification involves labeling of behavior as a disability and interventions often medicalize social problems.  Recall that according to UDHR Article 26 “Education shall be directed towards the full development of the human personality” which is not possible where medical interventions interfere with that development.  Such interventions also conflict with the right of self-determination applicable to girls and boys, taking into account their developing maturity.

H. Employment rights

28)  Employment rights have to go beyond ILO 159 to ensure non-discrimination and availability of economic opportunities and opportunities to contribute to social and cultural development, opening occupations of all kinds to women and men with disabilities who desire training, use of reasonable accommodation and modifications on the individual level as well as systemic changes to ensure access to diverse types of occupations and work environments,  eliminating sheltered workshops that are a form of institutionalized control of women and men with disabilities.  Ensure equal pay for equal work and non-discrimination and reasonable accommodation in all aspects of employment and hiring, including collective bargaining arrangements.

Other State Obligations

29)  Data collection on disability should be done under conditions where there is no disincentive to identifying as a woman, man, girl or boy with a disability and where personal privacy and identity are respected.  A person should be free to identify or not identify as a person with a disability and to disclose as much or as little information as she or he chooses.  Planning and implementation of data collection needs to be done in consultation with self-representing groups of women and men with disabilities.  Data collection should focus on the equal effective enjoyment of human rights.

30)  International cooperation will need to be articulated in a way that maintains the integrity of a rights-based approach and the central role of women and men with disabilities and our representative organizations in consultative processes.  In particular, the dangers of eugenics-related practices and medicalizing of disability against the wishes of the disabled people concerned must be guarded against.

Follow-up and Monitoring

31)  A monitoring committee should be composed of at least a majority of women and men with disabilities, who have expertise in human rights and disability, and who could be leaders of national or international organizations.  These experts should be chosen for balance according to diversity of disability, geographic region, and gender.

32)  Non-disabled experts do not substitute for the need to have women and men with disabilities representing each of our diverse communities.

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