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- User/Survivor Advocacy on the Disability Convention
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- By Tina Minkowitz
- Photos by Tom Olin
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- Negotiated in NY; “Ad Hoc Committee” of UN General Assembly
- Began in 2002
- High degree of openness to NGO participation, mainly organized through
International Disability Caucus of international, regional and national
organizations of PWD and allied NGOs
- Leadership of DPOs, “Nothing about us without us”
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- 8th core HR treaty in UN system
- Binding treaty supersedes previous international declarations on
disability
- Treaty monitoring bodies
- OHCHR, Human Rights Council, Special Rapporteurs
- NGO participation
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- Social model of disability as lens to focus non-discriminatory
application of existing human rights
- World Network of Users and Survivors of Psychiatry (WNUSP) part of
International Disability Alliance (IDA)
- Formed IDC, steering committee
- 2004 Working Group composed of 27 governments, 12 NGOs chosen by IDC, 1
NHRI
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- International team: Hungary,
Peru, Ghana, Guinea, Uganda, India, Denmark, Sweden, USA, Canada, New
Zealand, Japan (attending AHC); more involved nationally and through
Internet
- WNUSP, MF/SCI, People Who, Venture House, others
- NZ govt delegation
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- Established new norms in human rights
- Raised awareness of user/survivor human rights issues on global scale
- Educated government decision-makers and disability community
- User/survivor movement gained experience in human rights advocacy
- Human rights focus of new national and regional groups
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- Legal capacity equal with others
- Passive rights and capacity to act
- Free and informed consent on equal basis with others
- Liberty without discrimination
- “in no case shall the existence of a disability justify a deprivation
of liberty”
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- Right to respect for integrity on an equal basis with others
- Relationship with torture and with free and informed consent
- Non-discrimination and equal protection
- Peer support and right to live in community
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- Users and survivors of psychiatry covered by the Convention
- PWD “includes” those with long term mental impairment
- “mental” distinguished from “intellectual”
- Impossible to predict duration
- Psychiatric diagnosis as both environmental barrier and imputed
disability
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- Legal capacity + free and informed consent = no forced psychiatry
- Liberty should be read in context as non-discrimination, no separate
standards or procedures are permitted for PWD such as “danger to self or
others”
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- From restrictive to enabling
- Not euphemism but actual equality of rights
- Repeal coercion-based MH laws and replace with laws on right to
supportive services
- Opportunity for programmatic development and policy support for the
kinds of services that people want
- Ensure that MH policy is treated as “disability” matter obligating DPO
consultation
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- Need for further advocacy to ensure forced psychiatry is dealt with as
torture
- Criminalized
- Grave human rights violation, victims and survivors entitled to
reparations
- Not only individual compensation but assurance of non-repetition,
honoring memory, restoring previously held status and rights
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- Need to ensure that “long term” does not limit coverage
- Is imputed disability “long term” if it affects our lives
significantly?
- Reject medical model implications of addressing disability primarily in
terms of “long term” impairment
- Important area for advocacy since it emerged late in negotiations
process
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- Article as a whole:
- Legal personality - recognition of personhood
- Legal capacity - capacity to act
- Access to support to exercise capacity
- Safeguards on measures related to exercise of capacity
- Prevent abuse
- Respect the rights, will and preferences of the person
- Subject to regular review, proportional to degree to which measures
affect rights and interests
- International human rights law
- Financial rights
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- Equal legal capacity - not only presumption
- Every human being has a will and can express it
- Poor judgment, lack of insight, perceived deficiencies in capability are
irrelevant
- Need for support is interactive, not objective determination
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- “legal capacity on an equal basis with others in all aspects of life”
- Repeal/reform of guardianship laws
- Guardianship cannot be imposed against a person’s will
- Guardianship transformed into support relationship with fiduciary
obligations but no coercive effect
- No restriction permissible - partnership not substitution
- Legal independence of persons
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- Repeal/ reform mental health laws
- Repeal all laws permitting and regulating coercive measures in MH
- Consider whether advisable from strategic or policy point of view to
create positive obligations to provide wanted services
- Is there a role for mental health laws without coercion?
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- Mental health laws based on incapacity as well as quasi-criminal
“dangerousness” and “public health” standards
- Neither of them valid under Convention
- “Dangerousness” falls to non-discrimination
- “Public health” justification for MH coercion amounts to systemic
discrimination regarding free and informed consent
- based on biological classification of human beings according to their
behavior, and use of behavior control methods that violate prohibition
against torture
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- Contract law: what is fair play in disability context?
- Civil rights: right to vote, right to marry
- Need analysis of legal framework to determine other implications
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- Equal responsibilities: abolish insanity defense
- Mental element of crime all that is needed to ensure fairness in
assigning criminal responsibility
- Disability may be relevant as a circumstance mitigating the seriousness
of the crime
- Reasonable accommodation required in all aspects of arrest, trial and
detention
- Should not impose punishment that is disproportionately harsh because
of interaction with disability
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- “Measures related to the exercise”
- Read together with other provisions, this must refer to support and not
to restrictive measures
- With equal legal capacity, and the obligation to respect the rights,
will and preferences of the person, support cannot be imposed against a
person’s will
- Safeguards should be understood to refer to wide range of support, and
tailored appropriately - need to ensure that PWD using support are not
over-protected compared with non-PWD using similar support.
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- “in accordance with international human rights law”
- Refer to treaties and not to disputed declarations that purport to set
lower standards for legal capacity of PWD
- CEDAW guarantees equal legal capacity to women (including women with
disabilities)
- All relevant provisions, including those in this Convention, addressing
prevention of abuse and exploitation and complementing the provision of
support.
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- Financial matters
- “subject to the provisions of this article”
- Read as reinforcing the obligation to provide access to support people
may need to exercise legal capacity
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- PWD cannot be deprived of liberty unless it is under disability-neutral
standards and procedures
- If deprived of liberty, entitled to same guarantees as others under
international human rights law, plus reasonable accommodation
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- Non-discrimination analysis caveat: distinctions that are reasonable and
objective, to achieve purposes that are legitimate under human rights
law (including Disability Convention) are not discrimination
- Psychiatric standards do not fit these criteria
- Not objective
- Not for legitimate purposes (violate principles and rights guaranteed
in this Convention)
- Not reasonable (disability profiling; collective punishment)
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- “physical and mental integrity of the person”
- Obligation underlying prohibition of torture and cruel, inhuman or
degrading treatment or punishment
- Independently guaranteed in regional HR conventions
- Does it help to get rid of forced psychiatry or establish that it is
violence?
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- “Forced interventions aimed at correcting, improving or alleviating any
actual or perceived impairment”
- Not in text but concept may be useful
- Disability dimension - intolerance of different ways of being human
- Autonomy and choice in matters relating to one’s own disability
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- Relationship with free and informed consent
- Not only about force, but also requires accurate information to make a
decision
- Civil/ political right, not subject to limitation
- As part of the right to health, free and informed consent was thought
to be subject to limitations (through general limitations clause in the
International Covenant on Economic, Social and Cultural Rights), but
this is inappropriate since consent is an individual freedom related to
important value of physical/mental integrity.
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- What does it cover?
- Different contexts in each regional treaty and in national legislations
- Universally applicable interpretation is as obligation underlying
International Covenant on Civil and Political Rights Article 7 (torture
and CIDT)
- Broad construction of Article 7, for example to prohibit corporal
punishment as disciplinary or educational measure
- Can be usable now to reinforce right to free and informed consent, and
begin to address medical intervention over objection as violence
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- Non-discrimination generally and with respect to work and adequate
standard of living
- Denial of reasonable accommodation is discrimination
- Right to live in community with choices equal to others; peer support
- Right to vote and stand for election
- Intersecting discrimination
- Gender
- Recognition of cultural identities
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- Children
- Evolving capacities, same rights as other children to express views and
have their views be given due weight in decisions about themselves
- Note early identification and intervention “as appropriate”
- Right to education not to be deprived on the basis of disability,
individualized support measures and reasonable accommodation
- Requiring children to be drugged as condition of admission to school
would violate this provision
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- “Close consultation” and “active involvement of” DPOs in legislation and
policies to implement convention or otherwise relating to pwd
- National monitoring by NHRI or equivalent - DPO involvement required
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- Committee of experts (TMB)
- “participation of experts with disabilities”
- Standard features including state reporting; individual and group
complaints and inquiry procedures in optional protocol
- Invites consultation with DPOs in nomination of experts and preparation
of state reports
- Committee may consult DPOs (included in “other competent bodies”) on
areas falling within their mandates, and transmit to them requests for
technical assistance
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- International cooperation obligations
- Inclusive development programs
- Capacity building and best practices
- Partnership with DPOs
- Caution: “cooperation in research and scientific and technical
knowledge”
- Conference of States Parties
- Mechanism to share information; in similar processes NGO participation
is assured
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- U.S. says it will not sign or ratify
- Disability community has not shown great interest, but could be
mobilized
- Highly developed u/s movement here
- Convention could give us the tools to win the long-standing battles
against coercion and for u/s-controlled and wanted services
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- What can be done:
- Begin to use Convention as framework for policy advocacy
- Work with local governments to accept Convention as relevant norm
- Work with other disability organizations for awareness-raising and
ratification
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- Additional areas for HR advocacy:
- Build awareness of disability in other HR mechanisms
- U.S. is party to ICCPR, CAT and CERD
- CERD report due in 2007
- Inter-American Commission on Human Rights
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- Convention belongs to all of us
- Needs collaborative study in grassroots groups to identify all its
potential
- International cooperation among u/s organizations, with other DPOs,
governments, development organizations
- User-survivor run collaborative centers to develop comprehensive
implementation models
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- Awareness raising: media, cultural materials
- Mad pride
- Human rights allies
- Building the movement with victories
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- More resources:
- www.wnusp.org
- www.un.org/socdev/enable
- www.un.org/socdev/enable/rights/adhoccom.html
- www.icrpd.net/en/toolkit/index.html
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