Lessons from the Experience of U.N. Convention on the Rights of Persons with Disabilities: Addressing the Democratic Deficit in Global Health Governance

Convention on the Rights of Persons with Disabilities, G.A Res. 61/106, U.N. Doc. A/Res/61/106 (Dec. 13, 2006) [hereinafter CRPD]. An Optional Protocol was adopted at the same time, Optional Protocol to the Convention on the Rights of Persons with Disabilities, G.A Res. 61/106, U.N. Doc. A/Res/61/106 (December 13, 2006) [hereinafter Optional Protocol]. The CRPD text, along with its drafting history, resolutions, and updated list of signatories and States Parties is posted on the United Nations Enable website, available at <http://www.un.org/esa/socdev/enable/rights/convtexte.htm> (last visited July 2, 2010).

Arbour L. , “Statement on the Ad Hoc Committee's Adoption of the International Convention on the Rights of Persons with Disabilities,” December 5, 2006, available at <http://www.ohchr.org/English/issues/disability/docs/statementhcdec06.doc> (last visited July 2, 2010).

See generally Metts R. L. , Disability Issues, Trends and Recommendations for the World Bank , World Bank, February 2000, at 1–9.

See United Nations Enable, “Fact Sheet on Persons with Disabilities,” available at <http://www.un.org/disabilities/default.asp?id=1474> (last visited July 2, 2010); see generally Helander E. , “Prejudice and Dignity: An Introduction to Community Based Rehabilitation,” 2nd World Bank, 1992.

Id.

World Health Professions Alliance, “Fact Sheet,” available at <http://www.whpaorg/factptsafetymedsage.htm> (last visited July 2, 2010).

Mont D. , “Measuring Disability Prevalence,” World Bank Social Protection Discussion Paper No. 0706 (March 2007): At 1.

Elwan A , “Poverty and Disability: A Survey of Literature,” World Bank Social Protection Discussion Paper No. 9932 (1999): At iv.

Lord J. (principal author), National Council on Disability White Paper on Understanding the Role of an International Convention on the Human Rights of People with Disabilities, June 12, 2002 [hereinafter National Council on Disability].

See Elwan , supra note 8, at iv.

Groce N. , “HIV and Disability: Capturing Hidden Voices,” World Bank and Yale University Survey, 2004, at 10, available through <http://globalsurvey.med.yale.edu/> (last visited July 2, 2010).

Id.

Id.

See Lord J. , “Human Rights YES! Action and Advocacy on the Rights of People with Disabilities,” University of Minnesota Human Rights Resource Center, 2007.

See Elwan , supra note 8, at 10–15.

Id.

See Metts , supra note 3, at 26–27.

Id., at 28.

Disability Rights Advocates, “Health Access Project,” available at <http://www.dralegal.org/projects/health_access/index.php> (last visited July 2, 2010).

Declaration on the Rights of Mentally Retarded Persons, G.A Res. 2856 (XXVI), 26 U.N. GAOR Supp. (No. 29), at 93, U.N. Doc. A/8429 (Dec. 20, 1971).

Declaration on the Rights of Disabled Persons, G.A Res. 3447 (XXX), 30 U.N. GAOR Supp. (No. 34), at 88, U.N. Doc. A/10034 (December 9, 1975).

For more on the medical model of disability, see generally, Oliver M. , Understanding Disability: From Theory to Practice (London: Palgrave Macmillan, 1996).

Stein M. Lord J. , “Jacobus TenBroek, Participatory Justice and the UN Convention on the Rights of Persons with Disabilities,” Texas Journal Civil liberties and Civil Rights 13, (Spring 2007): 167–185, at 170.

Oliver M. Sapey B. , Social Work with Disabled People (London: Basingstoke Macmillans, 1983): At 23.

See Declaration on the Rights of Mentally Retarded Persons, supra note 21, at art. 1.

Id., at Preamble.

World Programme of Action Concerning Disabled Persons, G.A Res. 37/52, 37th Sess., Supp. No. 51, UN. Doc. A/37/51 (December 3, 1982).

Principles for the Protection of Persons with Mental Illnesses and the Improvement of Mental Health Care, G.A Res. 119, U.N. GAOR, 46th Sess., Supp. No. 49, Annex at 188–192, U.N. Doc. A/46/49 (December 17, 1991).

See generally Rosenthal E. Rubenstein L. , “International Human Rights Advocacy under the ‘Principles for the Protection of Persons with Mental Illness,’” International Journal of Law & Psychiatry 16, no. 6 (1993): 546–557, at 557.

For more on how disability advocates shaped and in some instances substantially narrowed the debate around issues of compulsory treatment during the negotiations, see Kayess R. French P. , “Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities,” Human Rights Law Review 8, no. 1 (2008): 1–34, at 30; see also Lord J. , “Mirror, Mirror on the Wall: Voice Accountability and NGOs in Human Rights Standard Setting,” Seton Hall Journal of Diplomacy and International Relations 5 (2004): 93–110.

See UN Standard Rules, UN Standard Rules for the Equalization of Opportunities for Persons with Disabilities, 85th Plenary Meeting, para 1, Part IV, A/Res/48/96 (December 20, 1993).

Id., at ¶ 1, Part IV.

For more on these efforts, see generally, Lindqvist B. , “Standard Rules in the Disability Field,” in Degener T. Koster-Dreese Y. , eds., Human Rights and Disabled Persons: Essays and Relevant Human Rights Instruments (Boston: Martinus Nijhoff Publishers, 1995): At 64–65.

World Conference against Racism, Racial Discrimination, Xenophobia and Related Intolerance Durban, August 31-September 8, 2001, at para 179, available at <http://www.un.org/WCAR/aconf189_12.pdf> (last visited August 16, 2010).

Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, Third Committee, 56 Sess., Agenda Item 119(b), U.N. Doc. A/C.3/56/L.67/Rev.1 (Nov. 28, 2001).

Accreditation and Participation of Non-governmental Organizations in the Ad Hoc Committee to Consider Proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, UN GA Res. 56/168, U.N. Doc. A/RES/56/510 (December 19, 2001).

Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Decision on the Modalities of the Participation of Accredited Non-Governmental Organizations, U.N. Doc. A/57/357, at Part IV (August 2, 2002).

See generally, Lord J. , “Forging an International Advocacy Network on Disability Rights,” in Bob C. , ed., New “Rights” on the Rise (Philadelphia: University of Pennsylvania, 2008). See also Lord J. , “A Participatory Framework for NGO Engagement in the International Legal Process,” Proceedings of the American Society of International Law, 2001.

Quinn G. Degener T. , Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability , HR/PUB/02/1 (New York & Geneva: United Nations, 2002): At 1.

See generally, Lord , supra note 38.

For a book invoking this expression within the social model framework, see Charlton J. I. , Nothing about Us without Us: Disability, Oppression and Empowerment (Berkeley: University of California Press, 1998).

See generally, Lord , supra note 17.

UN Enable, List of NGOs Accredited to the Eighth Ad Hoc Committee, available at <http://www.un.org/esa/socdev/enable/rights/ahc8ngolistpart.htm> (last visited July 2, 2010).

For the composition of the Working Group, see Report of the Working Group to the Ad Hoc Committee, Annex 1, Draft comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities, UN Doc. A/AC.265/2004/WG/CRP.4 (2004) available at <http://www.un.org/esa/socdev/enable/rights/ahcwgreporta25.htm> (last visited July 2, 2010) [hereinafter Working Group report].

See Kayess French , supra note 30, at 30.

Id.

See CRPD, supra note 1, at art. 19.

Id., at art. 12.

Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, infra, note 50; see also “Frequently Asked Questions Regarding the Convention on the Rights of Persons with Disabilities,” available at <http://www.un.org/esa/socdev/enable/faqs.htm> (last visited August 17, 2010).

Convention on the Rights of the Child, G.A Res. 44/25, U.N. GAOR, 44th Sess., Supp. No. 49, at 161, U.N. Doc. A/44/49 (November 20, 1989) [hereinafter CRC].

See CRPD, supra note 1, at arts. 10–30.

Id., at preamble, arts. 1–2 and arts. 3–9.

Id., at arts. 31–40.

Id., at arts. 41–50.

See Optional Protocol, supra note 1.

See CRPD, supra note 1, at preamble (k) (expressing concern that in spite of soft laws “persons with disabilities continue to face barriers in their participation as equal members of society.”).

See id., at preamble (m) (acknowledging that “full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty”) and art. 4(3)

See id., at art. 1; id., at preamble (e) (describing disability as a condition arising from “interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” instead of inherent limitations). For a helpful overview of traditional models of disability, see Williams G. , “Theorizing Disability,” in Albrecht G. Seelman K. Bury M. , eds., Disability Studies (Thousand Oaks, CA: Sage Publications, 2001): At 123. On the medial model of disability specifically and its underlying assumptions, see French S. , What Is in On Equal Terms - Working with Disabled People (Boston: Butterworth-Heinemann, 1994): At 157–176.

See Kayess French , supra note 30.

See CRPD, supra note 1, at art. 4.

See CRPD, supra note 1, at arts. 10–30.

See, e.g., WHO Framework Convention on Tobacco Control, UN Doc. A56/8. Geneva: WHO, February 27, 2005, at art. 3, available at <http://www.who.int/tobacco/framework/WHO_FCTC_english.pdf> (last visited August 17, 2010); see also Taylor A , “Governing the Globalization of Public Health,” Journal of Law Medicine & Ethics 32, no. 3 (2004): 500–508, at 500.

For more on the CRPD's monitoring mechanisms, see generally Stein M. Lord J. , “Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential” Human Rights Quarterly 32 (2009): 689–728; Lord J. Stein M. , “The United Nations Convention on the Rights of Persons with Disabilities as a Vehicle for Social Transformation,” in National Monitoring Mechanisms of the Convention on the Rights of Persons with Disabilities, Comisión Nacional de los Derechos Humanos de México, Network of the Americas & Office of the United Nations High Commissioner for Human Rights, 2008, at 109.

Id.

See CRPD, supra note 1, at art. 33(1).

Id., at art. 33(1).

Id., at art. 33(2).

Id., at art. 33(3).

Taylor Allyn L. , “Addressing the Global Tragedy of Needless Pain: Rethinking the UN Single Convention on Narcotic Drugs,” Journal of Law, Medicine and Ethics 556 2008.

Lord J. Guernsey K. , Monitoring Symposium: A Contribution to the Formulation of Proposals for Monitoring a United Nations Convention on the Rights of People with Disabilities Report , U.S. National Council on Disability, American University, School of International Service & Mental Disability Rights International (2005): At 4–5.

Id.

Id.

See CRPD, supra note 1, at art. 35.

Id., at arts. 34, 1.

See id., at arts. 35, 36, 37, 38(b), 39.

See Optional Protocol, supra note 1, at art. 6.

Schachter O. , “The UN Legal Order: An Overview,” in Joyner C. , ed., The United Nations and International Law (Cambridge, England: Cambridge University Press, 1997): At 1, 13.

See CRPD, supra note 1, at arts. 25 Preamble, 25(a).

See, e.g., Committee on Economic, Social and Cultural Rights, General Comment 5, 11th Sess., U.N. Doc. E/1995/22 (September 12, 1994), available at <http://www1.umn.edu/humanrts/gencomm/epcomm5e.htm> (last visited August 16, 2010).

Committee on Economic, Social and Cultural Rights, General Comment 14, 22nd Sess., U.N. Doc. E/C.12/2000/4 (August 11, 2000), available at <http://www.unhchr.ch/tbs/doc.nsf/0/40d009901358b0e2c1256915005090be?Opendocument> (last visited July 2, 2010).

See CRPD, supra note 1, at art. 9.

Id., at art. 25.

See Groce , supra note 13.

Id.

See CRPD, supra note 1, at art. 3. Article 3 sets forth the following additional general principles: Respect for individual dignity, autonomy, and independence; respect for difference and acceptance of disability as human diversity; equal opportunity; complete and meaningful participation; accessibility; sexual equality; and respect for children's rights and support of their evolving capabilities. CRPD art. 3.

See CRPD, supra note 1, at art. 5.

Id., at art. 2.

Id., at Preamble(x), art. 23.

See Kayess French , supra note 30, at 29. Kayess and French suggest that this omission, along with the failure of the CRD to address other salient bioethical issues, “may come to be regarded as [the Convention's] greatest failing.” Id.

International Covenant on Civil and Political Rights, G.A Res. 2200A (XXI), U. N. GAOR, Supp. No. 16 at 52, U.N. Doc. A/6316 (Dec. 16, 1966) [hereinafter ICCPR].

The Working Group text, by contrast, sought to specifically address and ban institutionalization and involuntary treatment.

See ICCPR, supra note 90, at art. 7.

See generally, Annas G. Grodin M. , eds., The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (New York: Oxford University Press, 1992); Dickens B. , “Editor's Introduction to Research on Human Populations: National and International Ethical Guidelines,” Law Medicine & Health Care 19, no. 3–4 (1991): 157–161, at 157.

See generally Lord J. , “The Application of the Law concerning Genocide and Crimes against Humanity to People with Disabilities,” in Shelton D. , ed., Encyclopedia of Genocide and Crimes against Humanity (2004).

See CRPD, supra note 1, at art. 24–25

The only difference in the final formulation of the prohibition to the language in ICCPR is the addition of gender sensitive language - “or her” - regarding the need for free consent.

See Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine , Euro. Treaty Ser. 164, at art. 17 (January 12, 1999), available at <http://conventions.coe.int/Treaty/EN/Treaties/html/164.htm> (last visited July 2, 2010).

See CRPD, supra note 1, at art. 12.

See CRPD, supra note 1, at art. 12. For more on legal capacity, see generally Kayess French , supra note 30.

See CRPD, supra note 1, at art. 12.

Id., at art. 31(1).

Id., at art. 31(1)(a-b) (“The process of collecting and maintaining this information shall: (a) Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities; (b) Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics.”)

Taylor A , “The WHO Code of Practice on Health Worker Migration,” American Society of International Law Insight 12, no. 23 (December 2008), available at <http://www.asil.org/insights081111.cfm> (last visited July 2, 2010).

See CRPD, supra note 1, at art. 31.

For more on the issues surrounding variation in disability prevalence, see Mont D. , Measuring Disability Prevalence, SP Discussion Paper No. 0706 (2007), available at <http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf> (last visited July 2, 2010).

WHO, “International Classification of Functioning, Disability and Health,” 2001, available at <http://www.who.int/classifications/icf/en/> (last visited July 2, 2010).

Taylor A. L. , “International Law and Public Health Policy,” Encyclopedia, of Public Health vol. 3 (2008): At 667.

Milman-Sivan F. , “The Virtuous Cycle: A 110. New Paradigm for Democratizing Global Governance Through Deliberation,” Comparative Labor Law & Policy Journal 30, no. 4 (2009): 801–833, at 801–807.

Id.

Charnovitz S. , “Non-governmental Organizations and International Law,” American Journal of International Law 100, no. 2 (2006): 348–372, at 348. (Issue and page numbers?)

Mertus J. , “Considering Non-State Actors in the New Millennium: Towards Expanded Participation in Norm Generation and Norm Application,” New York University Journal of International Law & Policy 32, no. 2 (2000): 537–566, at 537.

For commentary on the legitimacy of United Nations action in the new world order and the problem of democratizing decision-making in international organizations, see generally, Reisman W. , “The Constitutional Crisis in the United Nations,” American Journal of International Law 87, no. 1 (1993): 83100, at 83. See also Alvarez J. , “The ‘Right to be Left Alone’ and the General Assembly,” Academic Council on the United Nations System 5, no. 5 (1994): 1–20, at 5; Alvarez J. , “The U.N. Security Council: Are There Checks to Provide Balances?” Law Quadrangle Notes 40 (Fall 1994); Gordon R. , “Article 2(7) Revisited: The Post-Cold War Security Council,” Academic Council on the United Nations System 5, no. 5 (1994): 21–36, at 21.

Kass N. , “An Ethics Framework for Public Health,” American Journal or Public Health 91, no. 11 (2001): 1776–1782, at 1776.

Thomas J. Sage M. Dillenberg J. Guillory V. , “A Code of Ethics for Public Health,” American Journal of Public Health 92, no. 7 (2002): 1057–1059

Taylor A. L. Sokol K. C. , “The Evolution of Global Health Law in a Globalized World,” in The Oxford University Global Community Yearbook of International Law & Jurisprudence ( Capaldao G. , ed., Ocena Publications, Oxford University Press, New York) 1, no. 1 (2007): 19–37.

WHO, Principles Governing Relations between the World Health Organization and Non-Governmental Organizations, available at <http://www.who.int/civilsociety/relations/principles/en/index.html> (last visited July 2, 2010).

Lanord C. , “A Study of WHO Official Relations with Nongovernmental Organizations,” CSIS Review Series, Civil Society Initiative 2002. Article on file with author (Taylor.)

See generally Taylor Sokol , supra note 115.

Gostin L. Taylor A. , “Global Health Law: A Definition and Grand Challenges,” Oxford Journal of Public Health Ethics 1, no. 1 (2008): 53–63.

See Working Group Report, supra note 44.

Id.

See MI Principles, supra note 39.

See Kayess French , supra note 30, at 23.

Id., at 22.

See World Programme of Action, supra note 27.