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”

Slide 5

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

Slide 7

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

Slide 9

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

Slide 41

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


	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”


	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


	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


	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


	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


	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”


	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


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


	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”


	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


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


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


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


	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


	“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


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?


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


	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


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


	“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.


	“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.


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


	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


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)


	“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?


	“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


	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.


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


	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


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