Remaking Human Rights

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Remaking Human Rights

• User/Survivor Advocacy on the Disability
  Convention

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• By Tina Minkowitz
• Photos by Tom Olin

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Convention on the Rights of Persons with
Disabilities

• 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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Human Rights

• 8th core HR treaty in UN system
• Binding treaty supersedes previous international
  declarations on disability
• Treaty monitoring bodies
• Committees of experts
• OHCHR, Human Rights Council, Special Rapporteurs
• NGO participation

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User/Survivor Participation

• 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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User/Survivor Participation

• 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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What did we accomplish?

• 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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New norms

• 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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New norms

• 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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New norms

• 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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What it means

• 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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Opportunity to change MH

• 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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What it means

• 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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What it means

• 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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More on Legal Capacity

• 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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Paradigm shift

• 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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Capacity to act - Implications

• legal capacity on an equal basis with others in
  all aspects of life
• Repeal/reform of guardianship laws
• Guardianship cannot be imposed against a persons
  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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Capacity to act - Implications

• 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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Interaction with other norms

• 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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Capacity to act - Implications

• 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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Capacity to act - Implications

• 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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Safeguards

• 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
  persons 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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Safeguards

• 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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More on Legal Capacity

• 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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More on Liberty

• 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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More on Liberty

• 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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More on Integrity

• 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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More on Integrity

• 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 ones
  own disability

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More on Integrity

• 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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More on Integrity

• 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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Other Important Features

• 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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Other Important Features

• 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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Implementation and Monitoring

• 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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Implementation and Monitoring

• 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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Implementation and Monitoring

• 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. and the Convention

• 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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U.S. and the Convention

• 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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U.S. and the Convention

• 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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Envisioning the Future

• 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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Envisioning the Future

• Awareness raising media, cultural materials
• Mad pride
• Human rights allies
• Building the movement with victories

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Nothing About Us Without Us

• 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