Remaking Human Rights

User/Survivor Advocacy on the Disability Convention

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/adhoc

com.html• www.icrpd.net/en/toolkit/index.html