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

Published online by Cambridge University Press:  01 January 2021

Janet E. Lord ,
David Suozzi  and
Allyn L. Taylor
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Extract

The United Nations Convention on the Rights of Persons with Disabilities (the CRPD or the Convention), adopted on December 13, 2006, and entered into force on May 3, 2008, constitutes a key landmark in the emerging field of global health law and a critical milestone in the development of international law on the rights of persons with disabilities. At the time of its adoption, the U.N. High Commissioner for Human Rights heralded the CRPD as a rejection of the understanding of persons with disabilities “as objects of charity, medical treatment and social protection” and an embrace of disabled people as “subjects of rights.”

The text of the Convention itself, and the highly participatory process by which it was negotiated, signal a definitive break from previous international approaches that focused on disability within a medical model framework. In contrast to traditional approaches, the CRPD embraces a social model of disability, concentrating the disability experience not in individual deficiency, but in the socially constructed environment and the barriers that impede the participation of persons with disabilities in society.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 38 , Issue 3 , Fall 2010 , pp. 564 - 579
Copyright
Copyright © American Society of Law, Medicine and Ethics 2010

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References

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).+(last+visited+July+2,+2010).>Google Scholar
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).Google Scholar
See generally Metts, R. L., Disability Issues, Trends and Recommendations for the World Bank, World Bank, February 2000, at 1–9.Google Scholar
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.Google Scholar
Id.Google Scholar
World Health Professions Alliance, “Fact Sheet,” available at <http://www.whpaorg/factptsafetymedsage.htm> (last visited July 2, 2010).+(last+visited+July+2,+2010).>Google Scholar
Mont, D., “Measuring Disability Prevalence,” World Bank Social Protection Discussion Paper No. 0706 (March 2007): At 1.Google Scholar
Elwan, A, “Poverty and Disability: A Survey of Literature,” World Bank Social Protection Discussion Paper No. 9932 (1999): At iv.Google Scholar
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].Google Scholar
See Elwan, , supra note 8, at iv.Google Scholar
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).Google Scholar
Id.Google Scholar
Id.Google Scholar
See Lord, J. et al., “Human Rights YES! Action and Advocacy on the Rights of People with Disabilities,” University of Minnesota Human Rights Resource Center, 2007.Google Scholar
See Elwan, , supra note 8, at 10–15.Google Scholar
Id.Google Scholar
See Metts, , supra note 3, at 26–27.Google Scholar
Id., at 28.Google Scholar
Disability Rights Advocates, “Health Access Project,” available at <http://www.dralegal.org/projects/health_access/index.php> (last visited July 2, 2010).+(last+visited+July+2,+2010).>Google Scholar
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).Google Scholar
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).Google Scholar
For more on the medical model of disability, see generally, Oliver, M., Understanding Disability: From Theory to Practice (London: Palgrave Macmillan, 1996).CrossRefGoogle Scholar
Stein, M. and 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.Google Scholar
Oliver, M. and Sapey, B., Social Work with Disabled People (London: Basingstoke Macmillans, 1983): At 23.CrossRefGoogle Scholar
See Declaration on the Rights of Mentally Retarded Persons, supra note 21, at art. 1.Google Scholar
Id., at Preamble.Google Scholar
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).Google Scholar
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).Google Scholar
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.CrossRefGoogle Scholar
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. and 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.CrossRefGoogle Scholar
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).Google Scholar
Id., at ¶ 1, Part IV.Google Scholar
For more on these efforts, see generally, Lindqvist, B., “Standard Rules in the Disability Field,” in Degener, T. and Koster-Dreese, Y., eds., Human Rights and Disabled Persons: Essays and Relevant Human Rights Instruments (Boston: Martinus Nijhoff Publishers, 1995): At 64–65.Google Scholar
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).+(last+visited+August+16,+2010).>Google Scholar
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).Google Scholar
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).Google Scholar
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).Google Scholar
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.Google Scholar
Quinn, G. and 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.Google Scholar
See generally, Lord, , supra note 38.Google Scholar
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).Google Scholar
See generally, Lord, , supra note 17.Google Scholar
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).+(last+visited+July+2,+2010).>Google Scholar
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].+(last+visited+July+2,+2010)+[hereinafter+Working+Group+report].>Google Scholar
See Kayess, and French, , supra note 30, at 30.Google Scholar
Id.Google Scholar
See CRPD, supra note 1, at art. 19.Google Scholar
Id., at art. 12.Google Scholar
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).+(last+visited+August+17,+2010).>Google Scholar
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].Google Scholar
See CRPD, supra note 1, at arts. 10–30.Google Scholar
Id., at preamble, arts. 1–2 and arts. 3–9.Google Scholar
Id., at arts. 31–40.Google Scholar
Id., at arts. 41–50.Google Scholar
See Optional Protocol, supra note 1.Google Scholar
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.”).Google Scholar
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)Google Scholar
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., and 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.Google Scholar
See Kayess, and French, , supra note 30.Google Scholar
See CRPD, supra note 1, at art. 4.Google Scholar
See CRPD, supra note 1, at arts. 10–30.Google Scholar
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.CrossRefGoogle Scholar
For more on the CRPD's monitoring mechanisms, see generally Stein, M. and 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. and 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.Google Scholar
Id.Google Scholar
See CRPD, supra note 1, at art. 33(1).Google Scholar
Id., at art. 33(1).Google Scholar
Id., at art. 33(2).Google Scholar
Id., at art. 33(3).Google Scholar
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.Google Scholar
Lord, J. and 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.Google Scholar
Id.Google Scholar
Id.Google Scholar
See CRPD, supra note 1, at art. 35.Google Scholar
Id., at arts. 34, 1.Google Scholar
See id., at arts. 35, 36, 37, 38(b), 39.Google Scholar
See Optional Protocol, supra note 1, at art. 6.Google Scholar
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.Google Scholar
See CRPD, supra note 1, at arts. 25 Preamble, 25(a).Google Scholar
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).+(last+visited+August+16,+2010).>Google Scholar
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).+(last+visited+July+2,+2010).>Google Scholar
See CRPD, supra note 1, at art. 9.Google Scholar
Id., at art. 25.Google Scholar
See Groce, , supra note 13.Google Scholar
Id.Google Scholar
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.Google Scholar
See CRPD, supra note 1, at art. 5.Google Scholar
Id., at art. 2.Google Scholar
Id., at Preamble(x), art. 23.Google Scholar
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.Google Scholar
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].Google Scholar
The Working Group text, by contrast, sought to specifically address and ban institutionalization and involuntary treatment.Google Scholar
See ICCPR, supra note 90, at art. 7.Google Scholar
See generally, Annas, G. and Grodin, M., eds., The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (New York: Oxford University Press, 1992); Dickens, B. et al., “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.Google Scholar
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).Google Scholar
See CRPD, supra note 1, at art. 24–25Google Scholar
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.Google Scholar
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).+(last+visited+July+2,+2010).>Google Scholar
See CRPD, supra note 1, at art. 12.Google Scholar
See CRPD, supra note 1, at art. 12. For more on legal capacity, see generally Kayess, and French, , supra note 30.Google Scholar
See CRPD, supra note 1, at art. 12.Google Scholar
Id., at art. 31(1).Google Scholar
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.”)Google Scholar
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).Google Scholar
See CRPD, supra note 1, at art. 31.Google Scholar
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).+(last+visited+July+2,+2010).>Google Scholar
WHO, “International Classification of Functioning, Disability and Health,” 2001, available at <http://www.who.int/classifications/icf/en/> (last visited July 2, 2010).+(last+visited+July+2,+2010).>Google Scholar
Taylor, A. L., “International Law and Public Health Policy,” Encyclopedia, of Public Health vol. 3 (2008): At 667.CrossRefGoogle Scholar
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.Google Scholar
Id.Google Scholar
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?)CrossRefGoogle Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
Kass, N., “An Ethics Framework for Public Health,” American Journal or Public Health 91, no. 11 (2001): 1776–1782, at 1776.CrossRefGoogle Scholar
Thomas, J., Sage, M., Dillenberg, J., and Guillory, V., “A Code of Ethics for Public Health,” American Journal of Public Health 92, no. 7 (2002): 1057–1059CrossRefGoogle Scholar
Taylor, A. L. and 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.Google Scholar
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).+(last+visited+July+2,+2010).>Google Scholar
Lanord, C., “A Study of WHO Official Relations with Nongovernmental Organizations,” CSIS Review Series, Civil Society Initiative 2002. Article on file with author (Taylor.)Google Scholar
See generally Taylor, and Sokol, , supra note 115.Google Scholar
Gostin, L. and Taylor, A., “Global Health Law: A Definition and Grand Challenges,” Oxford Journal of Public Health Ethics 1, no. 1 (2008): 53–63.CrossRefGoogle Scholar
See Working Group Report, supra note 44.Google Scholar
Id.Google Scholar
See MI Principles, supra note 39.Google Scholar
See Kayess, and French, , supra note 30, at 23.Google Scholar
Id., at 22.Google Scholar
See World Programme of Action, supra note 27.Google Scholar