International Human Rights for Individuals with Disabilities Sherrie Brown LSJ/CHID 434 January 28, 2009

Topics for Review and Discussion A question at the heart of the matter History of the UN actions concerning discrimination on the basis of disability Convention on the Rights of Persons with Disabilities (CRPD) America and disability rights Does CRPD-or will it-make a difference? 2

Who Qualifies for Rights?* What is it about disability that makes some people with this characteristic less worthy of the power to make independent decisions and exercise rights like other adults? * Title of book by Judith Failer 3

Is the source of all discrimination the label of disability? “The nondisabled world sees powerlessness as the natural product of dependence and dependence as the natural product of our needs.” Harriet McBryde Johnson Disabled individuals considered objects of not subjects of rights. Historically, racial minorities, women, immigrants all denied citizenship, or access to full panoply or rights, on the basis of “disability.” Douglas Baynton “The core problem is the “invisibility” of people with disabilities in the system of freedom.” Quinn & Degener 4

5 United Nations and Disability 1940s-50s, UN actively promotes rights through social welfare activities—e.g., disability prevention and rehabilitation by training personnel and establishing rehabilitation centers. 1960s, revamped policy to call for full participation in society. 1970s, concept of human rights for people with disabilities and equal opportunity for them.

6 International Decade of Disabled Persons Designated Year of Disabled persons 1982 – General Assembly adopted the World Programme of Action (WPA) 1987 – Global Meeting of Experts recommended that GA begin process of drafting convention 1993 – Standard Rules developed

7 World Programme of Action A global strategy to enhance disability prevention, rehabilitation and equalization of opportunities, which pertains to full participation of persons with disabilities in social life and national development. Emphasizes need to approach from a human rights perspective 3 Prongs: Analysis of principles, concepts and definitions relating to disabilities Overview of the world situation Recommendations for action at national, regional and international levels.

8 Equalization of Opportunities Central Theme of WPA Idea that issues concerning disabled persons should not be treated in isolation Achieve primarily through political and social action National human rights legislation is one approach

9 UN Declarations Declaration on Rights of Mentally Retarded Persons General Assembly adopts in 1971 Declaration on the Rights of Disabled Persons Adopted in 1975 People with disabilities should have equal civil and political rights.

10 UN Guidelines Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health (1991) Standard Rules for the Equalization of Opportunities for Persons with Disabilities (1993)

11 Standard Rules Main UN Rules guiding action at national level prior to UN Convention Purpose is to ensure that girls, boys, men and women with disabilities, as members of their societies, may exercise the same rights and obligations as others.

12 Rules Cover Precondition for equal participation Target areas for equal participation Implementation measures Monitoring mechanism (Special Rapporteur on Disability)

13 How successful? Some dimensions of disability policy have not been treated sufficiently. This is true concerning children with disabilities, in the gender dimension and for certain groups, mainly persons with developmental and psychiatric disabilities. It has been pointed out that the Rules do not include a strategy for improving living conditions of disabled people in regions with extreme poverty. Disabled persons in refugee or emergency situations are other areas that have not been dealt with. [T]he whole area of housing has not been included. Among other things this means that there is no guidance concerning the handling of the institutions where a great number of persons with disabilities still spend their whole lives under miserable circumstances.* * Second Report (2000) of Special Rapporteur

14 Development of the Convention Efforts beginning in 1980s but concentrated during with 8 sessions of Ad Hoc Committee appointed by General Assembly. Modeled after CEDAW, CRC, CERD 13 December 2006 adopted by UN; opened for signature 30 March 2007; entered into force 3 May Status of treaty and optional protocol (January 2010) 143 signatories/77 ratifications to Convention 88 signatories/48 ratifications to Optional Protocol

15 Visual Snapshot of Status

16 8 General Principles Respect for the inherent dignity, autonomy, freedom to make one’s own decision, independence Non-discrimination Full and effective participation; inclusion in society Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity Equality of opportunity Accessibility Equality between men and women Respect for the evolving capacities of children.

Why a Convention? A response to a development challenge—10% of the world’s population are defined as disabled; 80% living in developing countries. Although other UN treaties include people with disabilities, these treaties were not used to ensure access to rights. CRPD mandates state parties take action; does not create new rights. So is it a hybrid—development document and human rights treaty? 17

Purpose (Article 1) To promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. 18

19 Disability Definition Preamble: “Disability is an evolving concept, and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others.” Article 1: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

20 Discrimination Any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.

21 Reasonable Accommodation Carrying out, when necessary, appropriate modifications and adjustments, which do not impose a disproportional or undue burden, so that persons with disabilities can enjoy their human rights and fundamental freedoms on an equal basis with others (Article 2).

Equal Recognition Before Law Reflects the debates in the Ad Hoc Committees on “legal capacity” and “capacity to act.” Paradigm shift from assumption of incapacity (exclusion) to one of capacity (inclusion)? Not all human beings have the same capabilities but all can develop capacity with support. (Amita Dhanda) Does not preclude substituted decision making/judgment but also read in conjunction with other articles that support universal capacity (legal capacity and capacity to act). 22

States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. 23 Article 12

Article 12 and Ashley X Ashley is a 10 year old severely disabled (cognitively and physically) girl who was given large amounts of hormones, a hysterectomy and other surgeries at age 6, to limit her growth and prevent menstruation and other changes related to female maturation. Her parents worked with the physicians and the ethics board at Children’s Hospital in designing this “new treatment.” You are a disability rights lawyer and are arguing that her rights under Article 12 have been violated. How? 24

25 Optional Protocol Individual communications: Committee considers communications from individuals or group claiming to be victims of a violation of the CRPD. Inquiries: Committee member may conduct an inquiry on a SP, following information received indicating grave or systemic violations of the CRPD.

Does it or will it make a difference? Pros/cons of a separate human rights treaty? What does it do that Standard Rules don’t? Does it make disabled people more “visible?” Optional Protocols allow some redress for some individuals … but what consequence for violators? 26

From my perspective… Disability discrimination is ultimately based on power differential—largely due to fear of “being like that.” Powerlessness (label of incompetency) results in learned helplessness and self- fulfilling behavior. To the extent the CRPD changes those dynamics, it will be instrumental. 27

But the Elephants in the Room are Impairment – what will we ask of society in terms of changes to structural barriers? Reasonable accommodations/modifications Universal design? Mental capacity – what do we do with the legal standards of competency and surrogate decision making (universal capacity)? Parens Patrie Supported Decision Making? 28

Should the US sign/ratify? Does it add anything to our national nondiscrimination and civil rights laws? Compare purposes of ADA and CRPD Covered individuals What is considered discrimination Concept of universal capacity 29

Will we sign and/or ratify? Obama made campaign commitment to sign and urge ratification. He signed the Convention in July A commitment to the new treaty “merely to appear deferential to the needs of individuals with disabilities would be disastrous.” (Justesens) 30