Remaking Human Rights
User/Survivor Advocacy on the Disability Convention

"By Tina Minkowitz"
By Tina Minkowitz
Photos by Tom Olin

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”

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

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

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

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

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”

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

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

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”

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

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

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

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

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

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 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

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?

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

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

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

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 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.

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.

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

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

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)

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?

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 one’s own disability

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.

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

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

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

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

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

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

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

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

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

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

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

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