Protecting Rights and Building Capacities: Challenges to Global Mental Health Policy in Light of the Convention on the Rights of Persons with Disabilities
Restricted accessResearch articleFirst published online April, 2013
Protecting Rights and Building Capacities: Challenges to Global Mental Health Policy in Light of the Convention on the Rights of Persons with Disabilities
Convention on the Rights of Persons with Disabilities, December 13, 2006, 46 ILM 433, UN Doc A/RES/61/106 [hereinafter cited as CRPD].
2.
Id., at Art. 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.”).
3.
This is the case particularly in the areas of legal capacity and enabling community inclusion.
4.
See, e.g., MégretF., “The Disabilities Convention: Towards a Holistic Concept of Rights,”International Journal of Human Rights12, no. 2 (2008): 261–278; LordJ. E. and BrownR., “The Role of Reasonable Accommodation in Securing Substantive Equality for Persons with Disabilities: The UN Convention on the Rights of Persons with Disabilities,” in RiouxM.BasserL. A., and JonesM., eds., Critical Perspectives on Human Rights and Disability Law (Boston: Martinus Nijhoff, 2011): 273–307, at 277, 281 [hereinafter cited as “The Role of Reasonable Accommodation”]; LordJ. E., “Global Health Governance: Lessons from the Experience of the U.N. Convention on the Rights of Persons with Disabilities: Addressing the Democratic Deficit in Global Health Governance,”Journal of Law, Medicine & Ethics38, no. 3 (2010): 564–579, at 569 [hereinafter “Global Health Governance”]; QuinnG., “The United Nations Convention on the Rights of Persons with Disabilities: Toward a New International Politics of Disability,”Texas Journal on Civil Liberties & Civil Rights15, no. 1 (2009): 33–52, at 42–46 [hereinafter cited as “Toward a New International Politics of Disability”].
5.
The importance of this shift from object status to subject status has been often noted in discussions of Article 12 and of the CRPD more generally. See, e.g., QuinnG., “Personhood & Legal Capacity: Perspectives on the Paradigm Shift of Article 12 CRPD,” paper presented at Conference on Disability and Legal Capacity under the CRPD, Harvard Law School, Boston, February 20, 2010, available through <http://www.nuigalway.ie/cdlp/staff/gerard_quinn.html> at 3–5 (last visited March 1, 2013) [hereinafter cited as “Personhood and Legal Capacity”].
6.
The prevalence of intellectual disabilities has received less attention. The Association of Intellectual and Developmental Disabilities (AAIDD) has issued guidelines whereby diagnosis of intellectual disability requires assessment in three areas: cognitive functioning, adaptive behavior, and support needs. See LuckassonR., Mental Retardation: Definition, Classification and Systems of Support, 10th ed. (Washington, D.C.: American Association on Intellectual and Developmental Disability, 2002). On global incidence, see MaulikP. K., “Prevalence of Intellectual Disability: A Meta-Analysis of Population-Based Studies,”Research in Developmental Disabilities32, no. 2 (2011): 419–436. For critical analysis of the social and medical constructs of intellectual disability, see CarlsonL., The Faces of Intellectual Disability: Philosophical Reflections (Bloomington, IN: Indiana University Press, 2010).
7.
World Health Organization, The Global Burden of Disease: 2004 Update (Geneva: WHO Press, 2008) [hereinafter cited as Global Burden of Disease]. I note critiques of the construct of the global burden of disease, and in particular disability adjusted life years, below.
8.
See mhGAP Mental Health Gap Action Programme: Scaling Up Care for Mental, Neurological, and Substance Use Disorders (Geneva: WHO, 2010) [hereinafter cited as mhGAP Mental Health Gap Action Programme]: at 4.
9.
The Global Burden of Disease ranks unipolar depression as third highest contributor to the global burden of disease, at 4.3% of the total, and estimates that this condition will rise to top contributor by 2030. Moreover, it identifies “[m]ental disorders such as depression, alcohol use disorders and psychoses (e.g., bipolar disorder and schizophrenia)…among the 20 leading causes of disability.” (See supra note 7, at 34, and also Table 9 at 35).
10.
This analysis is said to reflect, inter alia, the role of mental disorders in depleting “labour, capital and other factors [relevant] to production levels in a country” (BloomD. E., The Global Economic Burden of Noncommunicable Diseases (Geneva: World Economic Forum, 2011) [hereinafter The Global Economic Burden of Noncommunicable Diseases]: at 14.
11.
Id. “Three distinct approaches are used to compute the economic burden: (1) the standard cost of illness method; (2) macroeconomic simulation and (3) the value of a statistical life” (at 6). The third approach places an economic value on health that “reflects a population's willingness to pay to reduce the risk of disability or death associated with NCDs” (at 14). The report is prefaced by the comment: “This evaluation takes place in the context of enormous global health spending, serious concerns about already strained public finances and worries about lacklustre economic growth. The report also tries to capture the thinking of the business community about the impact of NCDs on their enterprises” (at 6).
12.
See WHO Executive Board Resolution on Mental Health, “Global burden of mental disorders and the need for a comprehensive, coordinated response from health and social sectors at the country level,” EB130.R8, January 20, 2012, [hereinafter cited as WHO EB Resolution (2012)], relying upon The Global Economic Burden of Noncommunicable Diseases, supra note 10 at 5. In introducing this figure, the resolution states: “Mental health conditions frequently lead individuals and families into poverty and hinder economic development at the national level.” The statement indicates that these conditions are causal factors for poverty and impeded economic development (not vice versa). But see the comments below on the WHO's acknowledgement elsewhere of the “bi-directionality” of mental health and harms to human rights (including social and economic rights). See also GreenbergP. E., “The Economic Burden of Anxiety Disorders in the 1990s,”Journal of Clinical Psychiatry60, no. 7 (1999): 427–435 (estimating the economic costs imposed by anxiety disorders in the U.S. during the 1990s, including treatments for somatic illness associated with these conditions, as 42.3 billion dollars annually).
13.
World Report on Disability (Geneva: WHO, 2011): at 62 [hereinafter cited as World Report on Disability].
14.
A large multicountry survey supported by WHO showed that between 35% and 50% of people with serious mental disorders in developed countries, and between 76% and 85% in developing countries, received no treatment in the year before the study. A meta-analysis of 37 epidemiological studies across 32 developed and developing countries uncovered a median treatment gap between 32% and 78% for a range of mental health conditions including schizophrenia, mood disorders, anxiety disorders, and alcohol abuse or dependence. (citations and references omitted).
15.
Mental Health Atlas (2011) (Geneva: WHO, 2011) at 26–29 [hereinafter cited as Mental Health Atlas (2011)]. The data indicate that “[g]lobally, spending on mental health is less than two US dollars per person, per year and less than 25 cents in low income countries” (at 10).
16.
Id., at 10, 26.
17.
Id., at 63 (“Median expenditures on medicines for mental and behavioural disorders in upper-middle and high income counties is approximately 340 times greater than median expenditures in low and lower-middle income countries”).
18.
Id., at 72; World Report on Disability, supra note 13, at 71, 95–96, 103–106. See mhGAP Mental Health Gap Action Programme, supra note 8, at 8. Laws, policies, and practices directed at the support of persons with intellectual disabilities are addressed in the WHO Atlas: Global Resources for Persons with Mental Disabilities (Geneva: WHO, 2007). And see LecomteJ. and MercierC., “The WHO Atlas on Global Resources for Persons with Intellectual Disabilities: A Right to Health Perspective,”Salud Publica de Mexico50, Supp. 2 (2008): s160–s166.
19.
These are the WHO Mental Health Gap Action Programme (mhGAP) and WHO MIND (Mental Health Improvements for Nations Development). See mhGAP Mental Health Gap Action Programme, supra note 8, and the WHO MIND report, FunkM., Mental Health and Development: Targeting People with Mental Health Conditions as a Vulnerable Group (Geneva: WHO Press, 2010) [hereinafter cited as Mental Health and Development].
20.
See PatelV., “The Movement for Global Mental Health,”British Journal of Psychiatry198, no. 2 (2011): 88–90, and CollinsP. Y., “Grand Challenges in Global Mental Health,”Nature475, no. 7354 (2011): 27–30 [hereinafter “Grand Challenges”]. Also see the website: <www.globalmentalhealth.org> (last visited February 1, 2013). For a critique of “The Movement” as dismissive of alternative cultural approaches and as overly focused on pharmaceutical interventions, see GombosG., “Global Movement for Mental Health: A Well-Paved Road to Hell?” September 3, 2008, available at <http://gabor-in-india.blogspot.ca/2008/09/global-movement-for-mental-health-well.html> (last visited February 1, 2013). Mr. Gombos was elected to a two-year term on the UN Committee on the Rights of Persons with Disabilities in September 2010 (commencing January 1, 2011).
21.
See World Health Organization, mhGAP Intervention Guide for Mental, Neurological and Substance Abuse Disorders in Non-Specialized Health Settings (Geneva: WHO, 2010) [hereinafter cited as mhGAP Intervention Guide].
22.
See id., at 10–30 and mhGAP Mental Health Gap Action Programme, supra note 8, at 11–12. See also Early Psychosis Declaration: An International Consensus Statement about Early Intervention and Recovery for Young People with Early Psychosis (jointly issued by the World Health Organization and International Early Psychosis Association), available at <http://www.iris-initiative.org.uk/silo/files/early-psychosis-declaration.pdf> (last visited February 1, 2013). And see ChallengesGrand, supra note 19, at 28–29.
23.
See, e.g., mhGAP Mental Health Gap Action Programme, supra note 8, at 11–21.
See Global Burden of Disease, supra note 7, at 34.
26.
See World Report on Disability supra note 13, at 267; What Is Disability? UN Convention on the Rights of Persons with Disability, Eligibility Criteria and the International Classification of Functioning Disability and Health (proceedings from a conference in Rome, Italy, April 2010), BMC Public Health11, Supp. 4 (2011); MontD., Measuring Disability Prevalence (Disability & Development Team, HDNSP -The World Bank, 2007) available at <http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf> (last visited February 1, 2013).
27.
The point is made by Peter Cohen in connection with prevalence estimation of problem drug use: CohenP. D., “The Relationship between Drug Use Prevalence Estimation and Policy Interests,” in Estimating the Prevalence of Problem Drug Use in Europe (Luexembourg: Council of Europe, 1997): At 27.
28.
“Some people reject [the descriptor 'disability'] because they do not accept that anything about their mental health problem makes them less able than others. Others reject the disability label because their mental health problem is a fluctuating and not a permanent state.” (HarrisonK., “Disability and Mental Health Law,” in CooperJeremy, ed., Law, Rights and Disability [London: Jessica Kingsley Publishers, 2000]: 193–215, at 193).
29.
A positive interpretive framework is encouraged by the organization Intervoice (The International Community for Hearing Voices): “Our research shows that to hear voices is not the consequence of a diseased brain, but more akin to a variation in human behaviour, like being left-handed. It is not so much the voices that are the problem, but the difficulties that some people have in coping with them.” See <http://www.intervoiceonline.org> (last visited February 1, 2013).
30.
On the thesis that cultural context may affect both symptomology and prognosis, see TranulisC.CorinE., and KirmayerL. J., “Insight and Psychosis: Comparing the Perspectives of Patient, Entourage and Clinician,”International Journal of Social Psychiatry54, no. 3 (2008): 225–241, at 229. On the socio-cultural embeddedness of mental health problems, specifically as this relates to the mental health of indigenous peoples, see CohenA., The Mental Health of Indigenous Peoples: An International Overview (Geneva: Dept. of Mental Health, WHO, 1999): At 11–15. While warning against an extreme cultural relativism that would deny the possibility of any cross-cultural evaluation of health or mental health, Cohen adopts from Kleinman the idea of culture-specific “idioms of distress” (KleinmanA., Rethinking Psychiatry: Cultural Category to Personal Experience [New York: The Free Press, 1988]), to argue that “when assessing the mental health of indigenous peoples, it is necessary to remember that the distinctness of their cultures and how they express distress and conceptualize well-being may challenge many universalist notions in psychiatry.” (Cohen, id., at 15).
31.
Allan Frances, who was Chair of the task force that produced the DSM-IV, uses the phrase “the ever-shrinking domain of the normal” to describe the rapid expansion of diagnoses proposed for the DSM-V; FrancesA., “It's Not Too Late to Save ‘Normal’: Psychiatry's Latest DSM Goes Too Far in Creating Mental Disorders,”Los Angeles Times, March 1, 2010, available at <http://articles.latimes.com/2010/mar/01/opinion/la-oe-frances1-2010mar01> (last visited February 1, 2013).
32.
See WattersE., “The Americanization of Mental Illness,”New York Times, January 8, 2010, and WattersE., Crazy Like Us: The Globalization of the American Psyche (New York: Free Press, 2010).
33.
The mode of calculation of Disability Adjusted Life Years, and a critique from a public health perspective, is articulated by GrosseScott D. as follows: “DALYs are composed of two components: (1) years of life lost due to premature death and (2) years lived with disability (YLD) associated with nonfatal injuries and disease…YLD is calculated as the discounted present value of years lived in a condition multiplied by a disability or severity weight for that condition assigned on a scale from 0 (representing perfect health) to 1 (representing death). Weights closer to 1 imply that a year spent in that condition is perceived as being more equivalent to death than to a state of health.” The authors raise the following critique: “Because YLD is based on perceived desirability rather than measures of activity limitations, we do not believe the DALY meaningfully measures disability.” GrosseS. D., “Disability and Disability-Adjusted Life Years: Not the Same,”Public Health Reports124, no. 2 (2009): 197–202, at 197.
34.
Id.
35.
Note however that the language of human rights law also constructs as “burdens” the accommodations required to enable the participation of disabled persons. See KayessR. and FrenchP., “Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities,”Human Rights Law Review8, no. 1 (2008): 1–34, at 15 [hereinafter cited as “Out of Darkness into Light?”.].
36.
The efficacy of anti-depressive medications has been widely disputed. See KirschI., “Initial Severity and Antidepressant Benefits: A Meta-Analysis of Data Submitted to the Food and Drug Administration,”PLoS Medicine5, no. 2 (2008): E45 260–268; FountoulakisK. A. and MollerH. J., “Efficacy of Antidepressants: A Re-Analysis and Re-Interpretation of the Kirsch Data,”International Journal of Neuropsychopharmacology14, no. 3 (2011): 405–412.
37.
Judging the efficacy of anti-psychotics is complex, and the leading studies typically give little if any close attention to subjective experience. Some studies of antipsychotic treatment of first-episode psychosis show up to 90% efficacy rates by 12 months, judged in terms of symptom reduction (LiebermanJ. A., “Time Course and Biologic Correlates of Treatment Response in First Episode Schizophrenia,”Archives of General Psychiatry50, no. 5 (1993): 369–376). However, rates of discontinuation of medication – whether due to intolerability of effects or inefficacy in satisfactorily altering symptoms or other reasons – are as high as 50% (CottonS. M., “Gender Differences in Premorbid, Entry, Treatment, and Outcome Characteristics in a Treated Epidemiological Sample of 661 Patients with First Episode Psychosis,”Schizophrenia Research114, No. 1-3 [2009]: 17–24; CrossleyN. A., “Efficacy of Atypical v. Typical Antipsychotics in the Treatment of Early Psychosis: Meta-Analysis,”British Journal of Psychiatry196, no. 6 [2010]: 434–439, at 434). Moreover, antipsychotics have fewer symptom reducing effects among persons with chronic conditions, and discontinuation rates are even higher among this population (LiebermanJ. A., “Effectiveness of Antipsychotic Drugs in Patients with Chronic Schizophrenia,”New England Journal of Medicine353, no. 12 (2005): 1209–1223). On the lack of clear advances in efficacy among new generation (atypical) antipsychotics, see McDonaghM., Drug Class Review: Atypical Antipsychotic Drugs: Final Update 3 Report (Portland, OR: Oregon Health & Science University, 2010) (original report January 2005; Update 1 April 2006; Update 2 May 2008; Update 3 July 2010), available at <http://derp.ohsu.edu/about/final-document-display.cfm> (last visited February 1, 2013) [hereinafter cited as Drug Class Review].
38.
On the side effects of psychiatric medications more generally, see AronsonJ. K., Meyler's Side Effects of Psychiatric Drugs (Amsterdam: Elsevier, 2009) [hereinafter cited as Meyler's Side Effects]. On widespread under-reporting of inefficacy data from clinical trials, see GhaemiNassir S., “Publication Bias and the Pharmaceutical Industry: The Case of Lamotrigine in Bipolar Disorder,”Medscape Journal of Medicine10, no. 9 (2008): 211; McGauranN., “Reporting Bias in Medical Research: A Narrative Review,”Trials11 (2010): 37.
39.
See Crossley, id.; Lieberman, id.
40.
See Drug Class Review, supra note 35; Meyler's Side Effects, supra note 35.
41.
On the tendency for medico-legal reliance on the concept of “insight” despite the scientific inspecificity of this term, see DiesfeldK., “Insights on ‘Insight’: The Impact of Extra-Legislative Factors on Decisions to Discharge Detained Patients,” in DiesfeldK. and FreckeltonI., eds., Involuntary Detention and Therapeutic Jurisprudence: International Perspectives on Civil Commitment (Aldershot: Ashgate, 2003). Valuable background to the concept is provided in MarkovaI.S., Insight in Psychiatry (Cambridge, NY: Cambridge University Press, 2005).
42.
On recriminatory societal attitudes toward persons who discontinue psychiatric (in particular, anti-psychotic) medications, and sensitive discussion of the bases on which discontinuance may be chosen, see the Report of the Fatality Inquiry into the Death of Howard Hyde, (Report, pursuant to the Fatality Investigations Act, prepared by Nova Scotia Provincial Court Judge DerrickAnne S. [Halifax, NS: November 30, 2010]): at 304–307.
43.
I return to this point at the end of this section, on turning to the socio-economic determinants of mental health.
American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text revision (Arlington, VA: American Psychiatric Association, 2000).
46.
World Health Organization, ICD-10 Classifications of Mental and Behavioural Disorder: Clinical Descriptions and Diagnostic Guidelines (Geneva: World Health Organization, 1992).
47.
See HurstR., “The International Disability Rights Movement and the ICF,”Disability and Rehabilitation25, nos. 11–12 (2003): 572–576; BickenbachJ., “Monitoring the United Nations Convention on the Rights of Persons with Disabilities: Data and the International Classification of Functioning, Disability and Health,”BMC Public Health11, Supp. 4 (2011): S8. See also Lord, “Global Health Governance,”supra note 4, at 574. For a positive evaluation of the ICF's application to cross-cultural analysis of mental disability, see VromanK. and ArthanatS., “ICF and Mental Functions: Applied to Cross Cultural Case Studies of Schizophrenia,” in StoneJ. H. and BlouinM., eds., International Encyclopedia of Rehabilitation, available at <http://cirrie.buffalo.edu/encyclopedia/> (last visited February 1, 2013).
48.
AlvarezzA. S., “The Application of the International Classification of Functioning, Disability and Health in Psychiatry: Possible Reasons for Lack of Implementation,”American Journal of Physical Medicine & Rehabilitation91, no. 13, Supp. 1 (2012): S69–S73; see also HelanderE. (Former Chief Medical Officer Rehabilitation Programme, WHO), “A Critical Review of the 'International Classification of Functioning, Disability and Health (ICF)” (Presentation at a conference in Bucharest, Romania, 2003), available at <http://www.einarhelander.com/critical-review-ICF.pdf> (last visited February 1, 2013).
49.
BayliesC., “Disability and the Notion of Human Development: Questions of rights and capabilities,”Disability & Society17, no. 7 (2002): 725–739, at 728–30. (“In practice, although a social context to disability has been conceded, the actual classification remains grounded in western scientific concepts and formulations”) (at 729). However, Baylies considers the ICF “an important exercise in moving towards a broader agenda of rights and participation” (at 730). Also see HemmingssonH. and JonssonH., “The Issue Is: An Occupational Perspective on the Concept of Participation in the International Classification of Functioning, Disability and Health – Some Critical Remarks,”American Journal of Occupational Therapy59 (2005): 569–576 (the ICF insufficiently reflects the individual's subjective perception of autonomy and participation). For a call for increased concordance as between the ICF and the disease-modeled ICD, see BaronS. and LindenM., “The Role of the ‘International Classification of Functioning, Disability and Health’ in the Description and Classification of Mental Disorders,”European Archives of Psychiatry and Clinical Neuroscience258, Supp. 5 (2008): 81–85. An alternative model for monitoring human rights as they relate to disability, developed by Disability Rights Promotion International, explicitly aims to empower persons with disabilities through the data-gathering process; see PintoP. C., “Monitoring Human Rights: A Holistic Approach,” in RiouxM. H., eds., Critical Perspectives on Human Rights and Disability Law (Boston: Martinus Nijhoff Publishers, 2010): At 451–478.
50.
Kayess and French, supra note 34 (“Out of Darkness into Light?”) discuss the rejection of the ICF as a data-gathering tool by the International Disability Caucus [IDC], a group of disabled persons' organizations that played an important role in negotiations. “The IDC vehemently opposed reference to the ICF on the basis that it reflected a medical model of disability. From the IDC's point of view, the ICF was part of the human rights problem faced by persons with disability that the CRPD was to overcome through its exposition of the social model of disability” (at 25).
51.
For an applied critique of the use of ICF-based analysis to shape social policy, see d'AllessioS., Inclusive Education in Italy: A Critical Analysis of the Policy of Integrazione Scolastica (Studies in Inclusive Education, Vol 10) (Rotterdam: Sense Publishers, 2011): at Chapter 6: “Deconstructing Integrazione Scolastica,” at 107–127.
52.
See JollyD., “A Tale of Two Models,” on the website of the UK-based Disabled People Against the Cuts, available at <http://www.dpac.uk.net/2012/04/a-tale-of-two-models-disabled-people-vs-unum-atos-government-and-disability-charities-debbie-jolly/> (last visited February 1, 2013). Jolly observes that the ICF originates in “a theory that seeks to broaden the perspective on illness, by taking into account not only the biological, but also psychological and social factors which may have an influence on sickness, and consequently on the course that healing takes.” However, the approach has been strategically deployed by public and private actors to disentitle disability claimants from social benefits, on the thesis that subjective attitudes rather than unsurmountable obstacles (internal or external) are to blame for their unemployment.
53.
On the historical loss and then tentative rediscovery of human rights at the WHO (in particular, of a human right to the social determinants of health), see MeierB., “Global Health Governance and the Contentious Politics of Human Rights: Mainstreaming the Right to Health for Public Health Advancement,”Stanford Journal of International Law46, no. 1 (2010): 1–50.
54.
See Mental Health and Development, supra note 18.
55.
Id., at 8–26, 28–31. See also United Nations Economic and Social Council, Mainstreaming Disability in the Development Agenda (Report for the Commission for Social Development, 46th Session 6–15 February 2008, ref E/CN.5/2008/6, 23 November 2007), available at <www.undp.org/mdg/basics.shtml> (last visited March 4, 2013); GostinL. O., “Human Rights of Persons With Mental Disabilities: The European Convention of Human Rights,”International Journal of Law and Psychiatry23, no. 2 (2000): 125–159, at 127–28 [hereinafter “Human Rights of Persons With Mental Disabilities”]; PatelV. and KleinmanA., “Poverty and common mental disorders in developing countries,”Bulletin of the World Health Organization81 (2003): 609–615; see World Report on Disability, supra note 13, at 10.
56.
See Mental Health and Development, supra note 18, at xv, xxv, 10; World Report on Disability, supra note 13, at 59.
57.
See Mental Health and Development, supra note 18, at 28–31.
58.
See PickettK. and WilkinsonG., “Inequality: An Underacknowledged Source of Mental Illness and Distress,”British Journal of Psychiatry197, no. 6 (2010): 426–428. See also WHO Fact Sheet, “Gender and Women's Mental Health” available at <http://www.who.int/mental_health/prevention/genderwomen/en/> (last visited February 1, 2013); Garcia-MorenoC., “Prevalence of Intimate Partner Violence: Findings from the WHO Multi-Country Study on Women's Health and Domestic Violence,”The Lancet368, no. 9543 (2006): 1260–1269; PatelV., “Gender Disadvantage and Reproductive Health Risk Factors for Common Mental Disorders in Women: A Community Survey in India,”Archives of General Psychiatry63, no. 4 (2006): 404–413; KuehnerC., “Gender Differences in Unipolar Depression: An Update of Epidemiological Findings and Possible Explanations,”Acta Psychiatrica Scandinavcia108, no. 3 (2003): 163–174; PrinceM., “No Health without Mental Health,”The Lancet370, no. 9590 (2007): 859–877. The complexity of the interaction of race and mental health status is addressed in WilliamsD. and EarlT., “Commentary: Race and Mental Health – More Questions Than Answers,”International Journal of Epidemiology36, no. 4 (2007): 758–760. The authors affirm that, as with gender, socio-economic determinants rather than biological or genetic factors account for differences in prevalence.
59.
The holistic conception of mental health orienting contemporary WHO mental health policy is stated as follows: “Mental health is a state of well-being in which an individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community. In this positive sense, mental health is the foundation for individual well-being and the effective functioning of a community.” (“Mental Health: A State of Well-Being,”WHO2011, available at <http://www.who.int/features/factfiles/mental_health/en/index.html> [last visited February 1, 2013]).
60.
WHO Resource book on mental health, human rights and legislation (Geneva: World Health Organization, 2005).
61.
The Mental Health Atlas (2011), supra note 14 at 22, indicates that dedicated mental health legislation is in place in just 38.5% of low income nations, as compared with 77.1% of high income nations. It is important to note, however, that the dedicated mental health laws in place in some nations may themselves be in conflict with human rights norms. Moreover, questions may be raised about the adequacy of institutional practice to existing laws whether in high-, middle- or low-income nations. See BartlettP., “Thinking about the Rest of the World: Mental Health and Rights Outside the ‘First World,’” in McSherryB. and WellerP., eds., Rethinking Rights-Based Mental Health Laws (Oxford: Hart, 2010): 397–418, at 410 [hereinafter “Thinking About the Rest of the World”] (procedural protections in central European nations “are often in form only”). For a critique of the legality of institutional practices in Canada, see BayM. (former Chair of Ontario's Consent and Capacity Board), “Making the Law Match the Reality; Making the Reality Match the Law,”Journal of Ethics in Mental Health1, no. 1 (2006): 1–5.
62.
See BartlettP., “Thinking about the Rest of the World,”id., at 403–408; BartlettP. and HamzicV., Reforming Mental Disability Law in Africa: Practical Tips and Suggestions (Nottingham: University of Nottingham Human Rights Law Centre, 2010). [hereinafter Reforming Mental Disability Law in Africa].
63.
This is discussed below with reference to legal controversies arising under the CRPD. For pre-CRPD critique of the WHO Resource Book, see The World Network of Users and Survivors of Psychiatry [WNUSP], “Comments on the Draft WHO Manual on Mental Health Legislation (July 12, 2001),” in PerlinM., International Human Rights and Comparative Mental Disability Law (Durham, NC: Carolina Academic Press, 2006): At 891–894 [hereinafter cited as International Human Rights and Comparative Mental Disability Law].
64.
From UPIAS, Fundamental Principles of Disability; Reprinted in edited form in OliverM., Understanding Disability: From Theory to Practice (Basingstoke, Hampshire, UK: Palgrave Macmillan, 1996): at 33 [hereinafter cited as Understanding Disability: From Theory to Practice]. Oliver provides background to and elaboration upon the Fundamental Principles at 19–29. Also see FinkelsteinV., “The Social Model Repossessed,” Manchester Coalition of Disabled People – December 1, 2001, available at <http://www.leeds.ac.uk/disability-studies/archiveuk/finkelstein/soc%20mod%20repossessed.pdf> (last visited February 1, 2013) [hereinafter “The Social Model Repossessed”]. Finkelstein distinguishes the historical materialist critique launched by the UPIAS from a “legalistic” or human rights-based approach, which he characterizes as vindicating an individualized model of impairment, along with individuated rights to health or well-being, and ignoring the central role of capitalist market systems in the production and reproduction of disability. Careful attention to a variety of “social models” is provided in KaiserH. A., “Canadian Mental Health Law: The Slow Process of Redirecting the Ship of State,”Health Law Journal17 (2009): 139–194, at 155, ftn. 73 [hereinafter “Redirecting the Ship of State”].
65.
See Understanding Disability: From Theory to Practice, supra note 61, at 32; RiouxM. H. and ValentineF., “Does Theory Matter? Exploring the Nexus between Disability, Human Rights, and Public Policy,” in PothierD. and DevlinR., eds., Critical Disability Theory: Essays in Philosophy, Politics, Policy and Law (Vancouver: UBC Press, 2006): 47–69, at 50–51 (distinguishing “biomedical” from “functional” approaches, both of which are grounded in the idea of individual pathology (or incapacity) and position “disability as a field of professional expertise”) [hereinafter Critical Disability Theory]. For description of the medical model as it applies in the mental health context specifically, see KaiserH. A., id., at 153–54 (“the physician becomes the authority figure and decision maker, wielding the wide discretionary powers provided by legislation, to ensure that ill individuals, once several preconditions are present, can be forcibly assessed, hospitalized, and treated.”).
66.
But see SamahaA. M., “What Good Is the Social Model of Disability?”University of Chicago Law Review74, no. 4 (2007): 1251–1308, at 1308 (“a causal account of disadvantage, however insightful, is no substitute for norms.”) Samaha argues that the social model may potentially inform a set of alternative political and policy approaches, including utilitarianism and libertarianism, in addition to one or another form of egalitarianism.
67.
On the historical materialist critique, see “The Social Model Repossessed,”supra note 61. On the postmodern or poststructuralist critique, see TremainS., “On the Government of Disability: Foucault, Power, and the Subject of Impairment,” in DavisL., ed., The Disability Studies Reader, 2nd ed. (New York: Routledge, 2006): 185–196. Also see generally, “Out of Darkness into Light?”supra note 34, at 5–8, 21–22.
68.
See LewisBradley, “A Mad Fight: Psychiatry and Disability Activism,” in The Disability Studies Reader, id., at 339–352.
69.
See ChamberlinJ., On Our Own: Patient Controlled Alternatives to the Mental Health System (New York: Hawthorn, 1978); ChamberlinJ., “The Ex-Patients Movement: Where We've Been and Where We're Going,”Journal of Mind and Behaviour11, nos. 3 & 4 (1990): 323–336 [hereinafter cited as “The Ex-Patients' Movement”]; ChamberlinJ., “Citizenship Rights and Psychiatric Disability,”Psychiatric Rehabilitation Journal21, no. 4 (1998): 405–408. Also see CookJ. and JonikasJ., “Self-Determination among Mental Health Consumers/Survivors: Using Lessons from the Past to Guide the Future,”Journal of Disability Policy Studies13, no. 2 (2002): 87–95.
70.
See, e.g., From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (Washington, D.C.: National Council on Disability, 2000).
71.
See, e.g., SzaszT., Ideology and Insanity: Essays on the Psychiatric Dehumanization of Man (Syracuse, NY: Syracuse University Press, 1991 [1971]).
72.
See, e.g., BurstowB. and WeitzD., eds., Shrink Resistant: The Struggle Against Psychiatry in Canada (Vancouver: New Star Books, 1988). Also see EstroffS., “Subject/Subjectivities in Dispute: The Politics and Poetics of First Person Narratives of Schizophrenia,” in BarrettR. and JenkinsJ., eds., The Edge of Experience: Schizophrenia, Culture, and Subjectivity (Cambridge: Cambridge University Press, 2004): 282–302.
The Mental Disability Advocacy Centre [MDAC] and Mental Disability Rights International [MDRI] are two examples of active non-governmental investigative and advocacy bodies. See, e.g., MDAC, Cage Beds: Inhuman and Degrading Treatment or Punishment in Four EU Accession Countries (2003), available at <http://mdac.info/sites/mdac.info/files/English_Cage_Beds.pdf> (last visited March 1, 2013); MDRI, Human Rights & Mental Health: Uruguay (1995), available at <http://www.mdri.org/PDFs/reports/uruguay%20report%20spanish%20and%20english.pdf> (last visited February 1, 2013); MDRI, Human Rights & Mental Health: Hungary (1997), available at <http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/Hungary.pdf> (last visited March 1, 2013). Also see LordJ. E., “Shared Understanding or Consensus-Masked Disagreement? The Anti-Torture Framework in the Convention on the Rights of Persons with Disabilities,”Loyola of Los Angeles International & Comparative Law Review33, no. 1 (2010): 27–81, at 29–32 [hereinafter “The Anti-Torture Framework”].
75.
The precedent instruments (and key decisions thereunder) are described and subject to critical analysis in GostinL. O., “Human Rights of Persons with Mental Disabilities,”supra note 52, at 128–131; GostinL. O. and GableL., “The Human Rights of Persons with Mental Disabilities: A Global Perspective on the Application of Human Rights Principles to Mental Health,”Maryland Law Review63, no. 1 (2004): 20–121 [hereinafter cited as “The Human Rights of Persons with Mental Disabilities: A Global Perspective”]; International Human Rights and Comparative Mental Disability Law, supra note 60, at 927–934, 938–939; PerlinM., International Human Rights and Mental Disability Law: When the Silenced Are Heard (Oxford: Oxford University Press, 2012): At 21–33, 46 [hereinafter When the Silenced Are Heard]. See also “Global Health Governance,” supra note 4, at 566–567; Kaiser, “Redirecting the Ship of State,”supra note 61, at 159–160; DhirA., “Human Rights Treaty Drafting through the Lens of Mental Disability,”Stanford Journal of International Law41, no. 2 (2005): 181–216, at 184–189 [hereinafter cited as “Human Rights Treaty Drafting”].
76.
See the sources cited and discussed in When the Silenced Are Heard, id., at 21–27.
77.
See “Human Rights Treaty Drafting,”supra note 72, at 186; RosenthalE. and SundramC. J., “International Human Rights in Mental Health Legislation,”New York Law School Journal of International and Comparative Law21, no. 3 (2002): 469–536, at 474 [hereinafter cited as “International Human Rights in Mental Health Legislation”].
78.
For examples of institutional abuses, see the MDAC and MDRI reports cited in supra note 71; LewisO., “Mental Disability Law in Central and Eastern Europe: Paper, Practice, Promise,”Journal of Mental Health Law8 (December 2002): 293–303; Reforming Mental Disability Law in Africa: Practical Tips and Suggestions, supra note 59; SailasE. and WahlbeckK., “Restraint and Seclusion in Psychiatric Inpatient Wards,”Current Opinion in Psychiatry18, no. 5 (2005): 555–559; When the Silenced Are Heard, supra note 72, at 89–95, and from the same volume, Chapter 6, “The Use of Mental Disability Law to Suppress Political Dissent,” at 59–80; the Bulgarian Helsinki Committee, Submission to the Human Rights Committee Regarding the Consideration of the Third Periodic Report of Bulgaria 102nd session (11 -29 July 2011), Geneva, at 22–24 [hereinafter Bulgarian Helsinki Committee Submission 2011], available at <http://www2.ohchr.org/english/bodies/hrc/docs/ngo/BHC_Bulgaria_HRC102.pdf> (last visited February 1, 2013).
79.
See When the Silenced Are Heard, supra note 72, at 93–95.
80.
See BartlettP., “Thinking about the Rest of the World,”supra note 58, at 410 (discussing imposition of “plenary guardianship almost as a matter of routine” in cases of involuntary psychiatric hospitalization in much of central Europe); and see the Bulgarian Helsinki Committee Submission2011, supra note 75, at 17–18.
81.
See, e.g., “Global Health Governance,”supra note 4, at 566–567; “International Human Rights in Mental Health Legislation,”supra note 74, at 476–477. On the “hardening” of soft law into customary international law or domestic legal regimes, see When the Silenced Are Heard, supra note 72, at 29–30.
82.
See “International Human Rights in Mental Health Legislation,”supra note 74, at 475; “Human Rights Treaty Drafting” supra note 72, at 186–189. On controversy among interpretations of the MI Principles as rights-promoting or rights-eroding, see “Out of Darkness into Light?” supra note 34, at 15. At 16, Kayess and French note criticism of the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities for reflecting a medical model of disability rather than one based in acknowledgement of human diversity (GA Res. 48/96, 20 December 1993, A/RES/48/96, Supp No. 49, Annex at 202&11, available at <http://www.un.org/documents/ga/res/48/a48r096.htm> [last visited February 1, 2013]).
83.
On the European Convention on Human Rights as it applies to persons with mental disabilities, see “Human Rights of Persons with Mental Disabilities,”supra note 52, at 136–149; and BartlettP., Mental Disability and the European Convention on Human Rights (Leiden: Martinus Nijhoff, 2007). Criticism of Article 5(1)(e) (which contemplates deprivation of liberty on the basis of “unsound mind” subject to certain safeguards) is noted by Amnesty International Ireland, “Annex 1 – Is the Existence of a Separate Mental Health Act Inherently Discriminatory? – Discussion” in Mental Health Act 2011: A Review) (March 22, 2011), available at <http://www.amnesty.ie/sites/default/files/MENTAL%20HEALTH%20ACT%20REVIEW.pdf> (last visited February 1, 2013) [hereinafter Mental Health Act 2011: A Review]. For a critical appraisal critique of developments under the African Charter on Human and Peoples' Rights (in particular the decision in Purohit and Moore v. The Gambia, Communication No. 241/2000 (2003), AHRLR 96), see Reforming Mental Disability Law in Africa, supra note 59, at 4 and 8–9; and “The Role of Reasonable Accommodation,” supra note 4, at 293–297. For discussion of some important advances under the Inter-American Convention on Human Rights, see International Human Rights and Comparative Mental Disability Law, supra note 60, at 932–933; “The Human Rights of Persons with Mental Disabilities: A Global Perspective,” supra note 72, at 516–518.
84.
See When the Silenced Are Heard, supra note 72, at 46–56.
85.
See “Human Rights Treaty Drafting,”supra note 72, at 189; “Toward a New International Politics of Disability,”supra note 4, at 37–39.
86.
For discussion of systemic effects of litigation brought under the Inter-American Convention of Human Rights in Paraguay and in Brazil, see When the Silenced are Heard, supra note 72, at 53–54. The Paraguay settlement discussed by Perlin is also noted in the World Report on Disability, supra note 13, at 144 (Box 5.3). Also of note is the recent decision of the European Court of Human Rights in the case Stanev v. Bulgaria, (Grand Chamber judgment, Strasbourg, January 17, 2012), finding violations of Arts. 3 & 5 of the ECHR and so confirming the entitlement of residents of Bulgarian social care homes to certain procedural safeguards. For critical discussion of the decision from an intervener in the case, Interights, see <http://www.interights.org/stanev/index.html> (last visited February 1, 2013).
87.
See the sources cited at notes 71–80, above. International legal recognition of the rights of persons with disabilities, in particular the right to non-discrimination, carries the potential to spur domestic legal reforms as well as the potential to inform and strengthen the application of these rights in legal regimes in which they are already acknowledged. On advances in and limitations of anti-discrimination approaches to disability in Canada, see PothierD., “Appendix: Legal Developments in the Supreme Court of Canada Regarding Disability,” in Critical Disability Theory, supra note 62, at 305–317. (“Although decisions in the Supreme Court of Canada in the last two decades have involved significant advances for persons with disabilities, there is much to be done to achieve substantive equality” [at 316]). For analysis of the U.S. Americans with Disabilities Act, emphasizing the implications for workers with mental disabilities, see StefanS., “You'd Have to be Crazy to Work Here: Worker Stress, the Abusive Workplace, and Title I of the ADA,”Loyola of Los Angeles Law Review31, no. 3 (1998): 795–846; StefanS., Unequal Rights: Discrimination against People with Mental Disabilities and the Americans with Disabilities Act (Washington, D.C.: American Psychological Association Press, 2001). See also QuinnG. and FlynnE., “Transatlantic Borrowings: The Past and Future of EU Non-Discrimination Law and Policy on the Ground of Disability,”American Journal of Comparative Law60, no. 1 (2012): 23–48; International Human Rights and Comparative Mental Disability Law, supra note 60, at 924–926; and DegenerT., “Disability Discrimination Law: A Global Comparative Approach,” in LawsonA. and GoodingC., eds., Disability Rights in Europe: From Theory to Practice (Oxford: Hart, 2005): At 87–106.
88.
See, e.g., DhandaA., “Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future?”Syracuse Journal of International Law & Commerce34, no. 2 (2007): 429–462 [hereinafter cited as “Legal Capacity in the Disability Rights Convention”]; MelishT., “The UN Disability Convention: Historic Process, Strong Prospects, and Why the U.S. Should Ratify,”Human Rights Brief14, no. 2 (2007): 37–47, at 43–47; “Global Health Governance,” supra note 4, at 567–569; TromelS., “A Personal Perspective on the Drafting History of the United Nations Convention on the Rights of Persons with Disabilities,” in QuinnG. and WaddingtonL., eds., European Yearbook of Disability Law, vol. I (Portland: Intersentia, 2009): At 115 [hereinafter cited as “A Personal Perspective”]; “Out of Darkness into Light?” supra note 34, at 17–32.
89.
The decision of August 1, 2002 stated: “That representatives from non-governmental organizations accredited to the Ad Hoc Committee may participate in the work of the Ad Hoc Committee by:.
90.
i. Attending any public meeting of the Ad Hoc Committee;.
91.
ii. Making statements, given the availability of time, in accordance with current United Nations practice;.
92.
iii. When time is limited, selecting from among themselves spokespersons, on a balanced and transparent basis, taking into account equitable geographical representation and the diversity of non-governmental organizations;.
93.
iv. Receiving copies of the official documents, as well as making written or other presentations. Written presentations shall not be issued as official documents except in accordance with Economic and Social Council resolution 1996/31 of 25 July 1996. Furthermore, non-governmental organizations may make their material available to delegations in accessible areas designated by the Secretariat.
94.
See Part IV of the Report of the First Session of the Ad Hoc Committee” (A/57/357).
95.
The decision of the ad hoc committee is found at item 15 of the Report of the Second Session of the Ad Hoc Committee (New York, June 16–27, 2003), available at <http://www.un.org/esa/socdev/enable/rights/a_58_118_e.htm> (last visited February 1, 2013).
A 2003 WNUSP submission to the ad hoc committee stated that it then had over 70 organizational members based in 30 countries, in addition to individual memberships. WNUSP is further described as having grown “out of users' and survivors' demands for recognition and representation.” The terms “user” and “survivor” are explained as follows: “A user or survivor of psychiatry is self-defined as a person who has experienced madness and/or mental health problems and/or has used or survived psychiatry/mental health services. We say ‘survive’ in recognition that the experience of confinement and imposition of forced treatments is harmful and life-threatening,” available at <http://www.un.org/esa/socdev/enable/rights/contrib-wnusp.htm> (last visited February 1, 2013).
98.
ReinaM. V., “How the International Disability Caucus worked during negotiations for a UN Human Rights Convention on Disability,” February 6, 2008, available at <http://globalag.igc.org/agingwatch/events/CSD/2008/maria.htm> (last visited February 1, 2013). See also “Global Health Governance,” supra note 4, at 567. Lord relates that the unprecedented inclusion of DPO delegates occurred in part because “the gallery space was inaccessible for people using wheel-chairs, and a move to an alternative conference room was not viable because of equally inaccessible gallery space. As a result, disability activists were forced onto the floor of the committee itself, allowing these activists the unintended advantage of heightened access to government delegates and participation in the negotiations.”.
99.
See the record of opening comments at the 5th session of the Ad Hoc Committee, on January 27, 2005:.
100.
The Coordinator reminded the delegates about the last three days' process. Expertise from disability organizations has been lacking, and as a result the discussion of Article 9 [the draft Article on equal legal capacity] was unbalanced. He suggested that, from time to time, disability organizations be invited to speak. He will propose that the Chairman set up a plenary meeting this afternoon because NGOs are allowed to speak at plenaries. This should be a short session led by Ambassador Luis Gallegos after which the Committee would resume informal sessions. Available at <http://www.un.org/esa/socdev/enable/rights/ahc5sum27jan.htm> (last visited February 1, 2013). Following this, a process was adopted whereby state and regional representatives typically held the floor in the mornings and DPOs were given the chance to make comments in formal plenary sessions in the afternoons.
101.
See “List of NGO Representatives Registered for the Sixth Session,”available at <http://www.un.org/esa/socdev/enable/rights/ahc6ngorepslist.htm> (last visited February 1, 2013). See also “Global Health Governance,”supra note 4, at 568: “[G]roups falling outside the membership of the international disability rights community – such as mainstream human rights organizations, public health organizations and health care professional associations – were secondary and relatively inactive participants in the process, although by the end of the negotiations…more than 800 representatives of DPOs and NGOs were registered to participate in the Ad Hoc Committee process.”.
102.
There were 59 participating organizations listed in a document submitted by the IDC on the right to equal legal capacity, submitted during the seventh session of the Ad Hoc Committee: available at <http://www.un.org/esa/socdev/enable/rights/ahc7docs/ahc7idcchairamend1.doc> (last visited February 1, 2013).
103.
Support Coalition International was described in an article written in the late 1990s as “a non-profit alliance of over 70 grassroots groups in eleven countries, advocating for human rights and alternatives in the ‘mental health’ system.” FonerJ., “Support Coalition International: Advocating for Human Rights and Alternatives in the ‘Mental Health’ System,”available at <http://www.power2u.org/articles/empower/support_coal.html> (last visited February 1, 2013). In 2005, the organization changed its name to MindFreedom International, recently described as “a nonprofit organization that unites 100 sponsor and affiliate grassroots groups with thousands of individual members to win human rights and alternatives for people labeled with psychiatric disabilities.” See <http://www.mindfreedom.org/about-us> (last visited January 1, 2013).
104.
The mission statement of the CACL states that it is “a family-based association assisting people with intellectual disabilities and their families to lead the way in advancing inclusion in their own lives and in their communities.” It adds: “We do this in Canada and around the world by sharing information, fostering leadership for inclusion, engaging community leaders and policy makers, seeding innovation and supporting research. We are dedicated to attaining full participation in community life, ending exclusion and discrimination on the basis of intellectual disability, promoting respect for diversity and advancing human rights to ensure equality for all Canadians,” available at <http://www.cacl.ca/about-us> (last visited February 1, 2013).
105.
This organization is described as “a global federation of family-based organizations advocating for the human rights of people with intellectual disabilities worldwide. For over forty years Inclusion International has been committed to the promotion of these human rights and our organization now represents over 200 member federations in 115 countries throughout five regions including the Middle East and North Africa, Europe, Africa and the Indian Ocean, the Americas, and Asia Pacific,” available at <http://www.inclusion-international.org/about-us/who-we-are/> (last visited February 1, 2013).
On contestation regarding the definition of disability, see “A Personal Perspective,”supra note 85, at 117–121; “Out of Darkness into Light,”supra note 34, at 23.
108.
See CRPD, supra note 2, Preamble, sub-Article (e). See also Article 1 (Purpose).
109.
These tensions are examined by Kayess and French in “Out of Darkness into Light,”supra note 34, at 21–25.
110.
The full set of overarching principles of the CRPD, as stated in Article 3, are:.
111.
“(a) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;.
112.
(b) Non-discrimination;.
113.
(c) Full and effective participation and inclusion in society;.
114.
(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;.
115.
(e) Equality of opportunity;.
116.
(f) Accessibility;.
117.
(g) Equality between men and women;.
118.
(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.”.
119.
For further examination of the substantive rights included in the CRPD, see “Out of Darkness into Light,”supra note 34, at 22–33; “Toward a New International Politics of Disability”supra note 4, at 41–46; “The Role of Reasonable Accommodation”supra note 4, at 273–281; and “Redirecting the Ship of State” supra note 61, at 161–164.
120.
Kayess and French note that such elaborations in the CRPD text often “transform formerly essentially non-interference based rights (or ‘negative’ rights) into positive state obligations.” See “Out of Darkness into Light,”supra note 34, at 33.
121.
This point is brought out carefully, with a particular focus on substantive equality and the attendant duty of reasonable accommodation, in “The Role of Reasonable Accommodation,”supra note 4, at 274–275, 277, 281: “The CRPD serves to re-conceptualize and unite civil and political rights and economic, social and cultural rights in the realization of equality for persons with disabilities by requiring reasonable accommodation through positive measures in all areas of life” (at 281).
122.
For analysis of the CRPD provisions relating to monitoring, see LordJ. E. and SteinM., “Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Potential and Future Opportunities,”Human Rights Quarterly32, no. 3 (2010): 689–728. Also see “Global Health Governance” supra note 4, at 569–571; and LewisO., “The Expressive, Educational and Proactive Roles of Human Rights: An Analysis of the United Nations Convention on the Rights of Persons with Disabilities,” in McSherryB. and WellerP., Rethinking Rights-Based Mental Health Laws (Oxford: Hart, 2010): 97–128, at 113–126. [Hereinafter cited as “The Expressive, Educational and Proactive Roles of Human Rights”].
123.
On the constitution of the committee, see Articles 34(1)-(3).
124.
Kayess and French note that “under the Optional Protocol all CRPD rights are potentially justiciable, not just its civil and political rights”: see “Out of Darkness into Light,”supra note 34, at 33. However, as Janet Lord and Rebecca Brown point out, “In many countries, many or all economic, social and cultural rights are not recognized or enforceable by law, leaving people with little hope of any remedy.” (See “The Role of Reasonable Accommodation,”supra note 4, at 305.).
125.
The implications of this obligation are examined by Oliver Lewis in “The Expressive, Educational and Proactive Roles of Human Rights,”supra note 105, at 115.
126.
Oliver Lewis elucidates the importance of this aspect of the convention, describing it as an “audacious constitutional masterstroke,”id., at 124.
127.
For developments on this front, see Survey of National Human Rights Institutions on Article 33.2 of the Convention on the Rights of Persons with Disabilities (Prepared for the International Coordinating Committee of National Institutions for the Promotion and Protection of Human Rights by the Canadian Human Rights Commission, August 2011), available at <http://www.nuigalway.ie/cdlp/documents/publications/ICC%20SurveyReport33.2.pdf> (last visited February 4, 2013).
128.
See Lewis's discussion of these tripartite functions: “The Expressive, Educational and Proactive Roles of Human Rights,”supra note 105, at 117–121.
129.
This was suggested by Uganda near the end of the negotiations, at the Seventh Session of the Ad Hoc Committee (January 27, 2006), to which the Chair responded that “a consultation provision had been included but was moved to Article 4(3) on General Obligations,” available at <http://www.un.org/esa/socdev/enable/rights/ahc7sum27jan.htm> (last visited February 4, 2013).
130.
The CRPD also specifies a forum for such cooperation: the Conference of States Parties, to be held at least every two years, at which states parties are to discuss matters relating to CRPD implementation (Art 41(1)). Lewis indicates that these conferences have so far been inclusive of NGOs (supra note 105 at 123–24). See <http://www.internationaldisabilityalliance.org/en/conference-of-states-parties> (last visited February 4, 2013).
131.
Various human rights scholars have commented upon the “expressive” (also “communicative”, “educative” and “proactive”) function of human rights. Oliver Lewis is my direct precedent in explicitly applying this approach in an analysis of the CRPD. See “The Expressive, Educational and Proactive Roles of Human Rights,” supra note 105, at 98–100, 105. Lewis in turn draws on FredmanS., Human Rights Transformed: Positive Rights and Positive Duties (Oxford: Oxford University Press, 2008): see esp. 32–33; van der BurgW., “The Expressive and Communicative Functions of Law, Especially with Regard to Moral Issues,”Law and Philosophy20, no. 1 (2001): 31–59 [hereinafter cited as “The Expressive and Communicative Functions of Law”]; and GeisingerA. and SteinM. A., “A Theory of Expressive International Law,”Vanderbilt Law Review60, no. 1 (2007): 77–131.
“The Expressive and Communicative Functions of Law,”supra note 114, at 33.
135.
“The Expressive, Educational and Proactive Roles of Human Rights,”supra note 105, at 105, citing “The Expressive and Communicative Functions of Law,”supra note 114, at 41.
136.
“The Expressive and Communicative Functions of Law,”id.
137.
“The Expressive, Educational and Proactive Roles of Human Rights,”supra note 105, at 98.
138.
Tina Minkowitz argues that involuntary psychiatric interventions breach not only Article 17, but also Articles 12 (equal legal capacity), 15 (the right to be free from torture and cruel, inhuman or degrading treatment or punishment), and 25 (the right to health care provided “on the basis of free and informed consent”): “The United Nations Convention on the Rights of Persons with Disabilities and the Right to be Free from Nonconsensual Psychiatric Interventions,”Syracuse Journal of International Law & Commerce34, no. 2 (2007): 405–428. See also MinkowitzT., “Abolishing Mental Health Laws to Comply with the CRPD,” in McSherryB. and WellerP., eds., Rethinking Rights-Based Mental Health Laws (Oxford: Hart, 2010): 397–418, at 151–177 [hereinafter cited as “Abolishing Mental Health Laws to Comply with the CRPD”]. On the scope of Article 15, see also “The Anti-Torture Framework,”supra note 71.
See the comments from the representatives of Japan and Uganda in the notes from January 26, 2005, id.
141.
See the comments from the representatives of Mexico and Thailand in the notes from January 26, 2005, id.
142.
See the comments from representatives of the IDC in the notes of discussions at the Fifth Session of the Ad Hoc Committee from Jan 27 2005, available at <http://www.un.org/esa/socdev/enable/rights/ahc5sum27jan.htm> (last visited February 4, 2013): “It was said yesterday that disability itself is not a justification for deprivation of liberty, but together with something else disability can be a basis of deprivation of liberty. Any adjective and addition to this paragraph such as ‘solely’ or ‘exclusively’ based on disability is a threat to human rights.”.
143.
See “Abolishing Mental Health Laws to Comply with the CRPD,”supra note 121, at 412–413; “Out of Darkness into Light?”supra note 34, at 30.
144.
However, the importance of this Article should not be diminished. Kayess and French note that this is “the first time the concept of ‘integrity of the person’ has been included as a standalone Article in a core United Nations human rights treaty.” See supra note 34, at 29. See also the discussion of Article 17 in McSherryB., “Protecting the Integrity of the Person: Developing Limitations on Involuntary Treatment,” in McSherryB., ed., International Trends in Mental Health Laws (Annandale: Federation Press, 2008): Special edition Volume 26, no. 2 of Law in Context: At 111–124.
Janet Lord states: “Accordingly, Article 17 provides no guidance whatsoever on the regulation of forced treatment that is practiced often with sweeping abandon and with little or no due process protection in many parts of the world.” (See “The Anti-Torture Framwework,”supra note 71, at 55.) The point is also made by Kayess and French, supra note 34, at 30: “The IDC and WNUSP sought the ultimate goal of the CRPD ‘outlawing’ all forms of compulsory assistance, but, when this proved impossible to achieve, they adopted the alternative lobbying stance that there ought to be no reference to compulsory treatment in the CRPD as this would provide it with legitimacy. Ultimately, this was the outcome of the Ad Hoc Committee's deliberations, although this appeared to be more to avoid conflict with the IDC and WNUSP, than because of any underlying commitment to the principle on which this opposition was based. The result is that one of the most critical areas of human rights violation for persons with disability – the use of coercive State power for the purpose of ‘treatment’ – remains without any specific regulation.”.
147.
Terry Carney makes the point that “neither silence nor ambiguous drafting displaces prior explicit language in previous international instruments”: “Guardianship, ‘Social’ Citizenship and Theorizing Substitute Decision-Making Law,” in DoronI. and SodonA., eds., Beyond Elder Law: New Directions in Law and Aging (Berlin: Springer-Verlag, 2012):1–17, at 5, footnote 6 (hereinafter cited as “Guardianship, ‘Social’ Citizenship and Theorizing Substitute Decision-Making Law”). There remains room for debate on how explicit contemplation of involuntary hospitalization or substitute decision-making in, for instance, a regional instrument such as the ECHR or in soft law at the international level stacks up against arguments based in purposive interpretation of the CRPD.
148.
See “Abolishing Mental Health Laws to Comply with the CRPD,”supra note 121, esp. at 167–168.
149.
See MorseS., “A Preference for Liberty: The Case Against Involuntary Commitment of the Mentally Disordered,”California Law Review70, no. 1 (1982): 54–106 [hereinafter cited as “A Preference for Liberty”]; and Morse's modified position (still in favor of abolishing involuntary civil commitment) in “Rationality and Responsibility,”Southern California Law Review74 (2000): 251–268, at 266–267.
150.
See “A Preference for Liberty,”id., at 93–98. On the lack of correlation of most mental disorders (including schizophrenia) with increased risk of violent behavior, absent other factors such as substance abuse, see MonahanJ., Rethinking Risk Assessment: The MacArthur Study of Mental Disorder and Violence (New York: Oxford University Press, 2001).
151.
See Kaiser, “Redirecting the Ship of State,”supra note 61, at 154 (“People subject to mental health law are too readily depicted as being incapable of making decisions and dangerous to themselves or others owing to their supposed individual pathologies”). WNUSP argued (successfully) for specific mention of informed consent as an aspect of the right to health. See the report of WNUSP commentary at the 6th session, August 8, 2005, available at <http://www.un.org/esa/socdev/enable/rights/ahc6sum8aug.htm> (last visited February 4, 2013).
152.
“Abolishing Mental Health Laws to Comply with the CRPD” supra note 121 at 168. Also see the WNUSP submissions on then-Article 15 (now Article 19), arguing that persons with disabilities should not be subject to involuntary hospitalization but, rather, should be offered supports to enable community inclusion. WNUSP makes the further point that access to community services should not be contingent upon acceptance of medication or other constraints upon fundamental liberties. (Sixth Session of the Ad Hoc Committee, August 1, 2005, available at <http://www.un.org/esa/socdev/enable/rights/ahc6sum1Aug.htm> [last visited March 4, 2013].).
153.
The main focus of the declaration is Article 17 (physical and psychological integrity): “Australia recognizes that every person with disability has a right to respect for his or her physical and mental integrity on an equal basis with others. Australia further declares its understanding that the Convention allows for compulsory assistance or treatment of persons, including measures taken for the treatment of mental disability, where such treatment is necessary, as a last resort and subject to safeguards.” This is one of a set of reservations, including one (noted below) on the right to equal legal capacity.
154.
Annual Report of the United Nations High Commissioner for Human Rights and Reports of the Office of the High Commissioner and the Secretary-General: Thematic Study by the Office of the United Nations High Commissioner for Human Rights on Enhancing Awareness and Understanding of the Convention on the Rights of Persons with Disabilities, UN Doc. A/HRC/10/48 (January 26, 2009) [hereinafter cited as the OHCHR Thematic Report 2009]: at para. 48.
155.
Id. The Special Rapporteur on Torture has also indicated that involuntary treatment and confinement are contrary to Articles 14 and 15 of the CRPD. (Interim Report of the Special Rapporteur on Torture and other Cruel, Inhuman and Degrading Treatment or Punishment, July 28, 2008, UN Doc A/63/175, at para. 44).
156.
See Committee on the Rights of Persons with Disabilities, Consideration of Reports Submitted by States Parties under Article 35 of the Convention: Concluding Observations of the Committee on the Rights of Persons with Disabilities (Tunisia), CRPD/C/TUN/CO/1, 5th sess. (May 13, 2011) para. 25 (recommending that Tunisia “repeal legislative provisions which allow for the deprivation of liberty on the basis of disability, including a psychosocial or intellectual disability”). And see Committee on the Rights of Persons with Disabilities, Consideration of Reports Submitted by States Parties under Article 35 of the Convention: Concluding Observations of the Committee on the Rights of Persons with Disabilities (Spain), CRPD/C/ESP/CO/1, 6th sess. (October 19, 2011), para. 36 (stating that Spain must “repeal provisions that authorize involuntary internment linked to an apparent or diagnosed disability; and adopt measures to ensure that health-care services, including all mental-health-care services, are based on the informed consent of the person concerned”).
157.
See DawsonJ. and SzmuklerG., “Fusion of Mental Health and Incapacity Legislation,”British Journal of Psychiatry188 (2006): 505–509.
158.
Id.
159.
Id., at 505: “This […] might permit earlier intervention, in both physical and mental illness, because intervention would be authorised as soon as the patient lacked capacity to determine treatment, whether or not there was an imminent threat of harm. That approach is likely to find support with many patients' families.”.
160.
Under Article 12(4), states parties must ensure “that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards,” specifically requiring “that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body.” Additionally, “The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests.”.
161.
Article 12(5) provides: “Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.”.
162.
See for instance my home jurisdiction's guardianship statute, Nova Scotia's Incompetent Persons Act, RSNS1989, c 218.
163.
See for instance Ontario's Health Care Consent Act, 1996, SO 1996, c 2, Sch A, and Substitute Decisions Act, 1992, SO 1992, c 30.
164.
For discussion of this and the other types of existing legal capacity standards, see “Legal Capacity in the Disability Rights Convention,”supra note 85, at 431–433.
165.
Again see Ontario's Health Care Consent Act, supra note 145, at s. 4(1). These (and other) common legal criteria informed the design of the influential clinical model of Appelbaum and Grisso, the MacCAT-T (consisting of four parameters: the ability to understand relevant information; the ability to reason about options; the ability to appreciate one's situation and the consequences of the choice; and the ability to express a choice.) See GrissoP. T., “The MacCAT-T: A Clinical Tool to Assess Patients' Capacities to Make Treatment Decisions,”Psychiatric Services48, no. 11 (1997): 1415–1419.
166.
See “Legal Capacity in the Disability Rights Convention,”supra note 85, at 431–433 (discussing this and the other conventional standards for assigning legal [in]capacity). This standard might also describe an illicit capacity assessment practice (i.e., substituting an outcome-based standard in practice where a functional standard is formally required).
167.
See Saskatchewan's The Adult Guardianship and Co-decision-making Act, SS 2000, c A-5.3, ss. 14(1)(a), 15, 16(1), 17(1)&(2).
168.
See British Columbia's Representation Agreement Act, RSBC1996, c 405. Under this statute, a person may appoint someone to help one make decisions, or to make decisions on one's behalf (s. 7). Capacity to make a representation agreement is adjudged on a different, more flexible standard than other forms of legal capacity (s. 8). However, this is not a comprehensive alternative to traditional forms of legal incapacity and substitute decision-making; B.C. also features more traditional guardianship and substitute decision-making laws. Moreover, under s.11, a representative cannot refuse involuntary psychiatric hospitalization and treatment authorized under the province's Mental Health Act, RSBC1996, c 288.
169.
The negotiations concerning Article 12 are explored in detail by Amita Dhanda in “Legal Capacity in the Disability Rights Convention,”supra note 85.
170.
See “Abolishing Mental Health Laws,”supra note 121, at 160.
171.
See the daily summary from January 27, 2005 (Fifth Session of the Ad Hoc Committee): “The International Disability Caucus (IDC) emphasized the need to address the legal capacity issue in the context of history. PWD [Persons with disabilities] have, over centuries, been perceived as lacking capacity. The notion of disqualification persists in existing legal norms across jurisdictions and is a result of social prejudices,” available at <http://www.un.org/esa/socdev/enable/rights/ahc5sum27jan.htm> (last visited February 4, 2013).
172.
The daily summary from January 18, 2006 (7th session of the Ad Hoc Committee) reflects an exchange between the discussion facilitator and an IDC representative, in which the facilitator asks if guardianship has any place in the model endorsed by IDC. The response is recorded as: “The IDC goal is to not legitimize guardianship. The point is that a need for 100% support will become 99% and then 98% if we are talking about supported decision making and this would not be possible in a guardianship situation,” available at <http://www.un.org/esa/socdev/enable/rights/ahc7sum17jan.htm> (last visited February 4, 2013).
173.
The IDC's “Explanatory Note on Legal Capacity and Forced Interventions,”available at <www.un.org/esa/socdev/enable/rights/ahc8contngos.htm> [last visited February 4, 2013]) states: “The support model acknowledges that there are times when other people make decisions for us, such as when a person is unconscious. Support continues to be provided to encourage the person to begin exercising legal capacity, while urgent needs are taken care of.” See also MinkowitzT., “Abolishing Mental Health Laws,”supra note 121, at 157–58.
174.
See “Legal Capacity in the Disability Rights Convention,”supra note 85, at 444–446.
175.
Exploration of the conditions that may support decision-making are proliferating in the wake of the CRPD. See, e.g., BachM. and KerznerL., A New Paradigm for Protecting Autonomy and the Right to Legal Capacity, report prepared for the Law Commission of Ontario, October 2010, at 72–82 [hereinafter cited as A New Paradigm for Protecting Autonomy and the Right to Legal Capacity]; McDaidS. and DelaneyS., “A Social Approach to Decision-Making Capacity: Exploratory Research with People with Experience of Mental Health Treatment,”Disability & Society26, no. 6 (2011): 729–742 [hereinafter cited as “A Social Approach to Decision-Making Capacity”]; MinkowitzT., “Abolishing Mental Health Laws to Comply with the CRPD,”supra note 121, at 160–166; WildemanS., “Insight Revisited: Relationality and Psychiatric Treatment Decision-Making Capacity,” in DownieJ. and LlewellynJ., eds., Being Relational: Reflections on Relational Theory and Health Law (Vancouver: UBC Press, 2011): 255, at 268–277.
176.
Of course, one practical alternative (contrary to the values of the CRPD) would be to rely on coercive institutional responses making non-compliance so awful that compliance is effectively compelled.
177.
WNUSP Implementation Manual for the United Nations Convention on the Rights of Persons with Disabilities (Feb 2008), available at <http://www.wnusp.net/documents/WNUSP_CRPD_Manual.pdf> [last visited March 1, 2013]. Similarly, the IDC is reported to have stated in the negotiations: “Seeking support in exercising legal capacity does not diminish or negate one's independence and capacity. Human interdependence is a fact that should be recognized as a legal principle.” (Daily summary from January 27, 2005 [Fifth Session of the Ad Hoc Committee], available at <http://www.un.org/esa/socdev/enable/rights/ahc5sum27jan.htm> [last visited February 4, 2013]).
178.
The daily summary of discussions from the Fifth Session of the Ad Hoc Committee (Feb 3, 2005) reflects the following statement from an IDC representative: “Non-disabled people take for granted their right to make bad decisions. PWD [persons with disabilities] deserve the same right,”available at <http://www.un.org/esa/socdev/enable/rights/ahc5sum3feb.htm> (last visited February 4, 2013). See also Koch (Re), (1997) 33 OR (3d) 485 (Gen. Div.) at 521, cited in Starson v. Swayze, 2003 SCC 32, [2003] 1 S.C.R. 722 at para. 76.
179.
This is the “endorsement constraint” propounded by Ronald Dworkin: the idea that “our lives do not go better when led from the outside,” even if this means we will make mistakes. See DworkinR., Sovereign Virtue: The Theory and Practice of Equality (Cambridge, MA: Harvard University Press, 2000): at 216–18, and KymlickaW., Liberalism, Community and Culture, (Oxford: Clarendon, 1989): at 12–13.
180.
Gerard Quinn states that “at the bottom of the debate” about legal capacity are “conceptions – sometimes competing conceptions – of personhood.” See QuinnG., “Personhood & Legal Capacity: Perspectives on the Paradigm Shift of Article 12 CRPD,” paper presented at Conference on Disability and Legal Capacity under the CRPD, Harvard Law School, Boston, February 20, 2010, at 5–6, available at <www.inclusionireland.ie/documents/HarvardLegalCapacitygqdraft2.doc> (last visited February 4, 2013).
181.
Michael Bach and Lana Kerzner (A New Paradigm for Protecting Autonomy and the Right to Legal Capacity, supra note 157) ground their approach to legal capacity in part in the capacities of support-persons to interpret expressions of will in light of a broader understanding of a person's “life narrative” (at 60–61).
182.
BuchananAllen and BrockDan W. argue that the ability to “express a choice” does not qualify as a standard of decision-making capacity at all. BuchananA. E. and BrockD. W., Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge: Cambridge University Press, 1989): at 49. But this would appear to be precisely the point of the radical model: to explode the concept of legal capacity and start fresh from the idea of mutual supports.
183.
See Bach and Kerzner, in A New Paradigm for Protecting Autonomy and the Right to Legal Capacity, supra note 157, construct a highly nuanced model of legal capacity. They propose three types of decision-making status – independent, supported, and facilitated – reflecting distinct functional abilities and supports. The standard applicable to independent decision-making is similar to existing functional standards, despite a different theoretical frame. In contrast, supported decision-making status is attracted where one is able to express one's intention, with supports (intention being a clearer indication of preference than will), or alternatively, to express one's will or to have support persons discern one's will in light of their familiarity with one's wider “life narrative.” Facilitated decision-making status (which requires recourse to a form of substitute decision-making) is reserved for situations in which no one can discern a person's contemporaneous will or intent, although the support person must remain vigilant for expressions of will.
“Australia recognizes that persons with disability enjoy legal capacity on an equal basis with others in all aspects of life. Australia declares its understanding that the Convention allows for fully supported or substituted decision-making arrangements, which provide for decisions to be made on behalf of a person, only where such arrangements are necessary, as a last resort and subject to safeguards” (registered upon Australia's accession to the Convention, July 17, 2008). Available at <http://treaties.un.org/Pages/ViewDetails.aspx?mtdsg_no=IV-15&chapter=4&lang=en> (last visited March 1, 2013).
186.
Declarations on point were made by Egypt and the Syrian Arab Republic. Iran declared that it does not consider itself bound by any of the terms of the Convention inconsistent with its existing rules. Declarations are available at <http://treaties.un.org/Pages/ViewDetails.aspx?mtdsg_no=IV-15&chapter=4&lang=en> (last visited March 1, 2013). For discussion of the asserted distinction between “capacity for rights” and “capacity to act,” see Background Conference Document Prepared by the Office of the United Nations High Commissioner for Human Rights: Legal Capacity, available at <www.un.org/esa/socdev/enable/rights/ahc6documents.htm> (last visited February 4, 2013); “Abolishing Mental Health Laws to Comply with the CRPD,”supra note 121, at 159–160; “Legal Capacity in the Disability Rights Convention,”supra note 85, at 442–445, 453–455.
187.
Committee on the Rights of Persons with Disabilities, Consideration of Reports Submitted by States Parties under Article 35 of the Convention: Concluding Observations of the Committee on the Rights of Persons with Disabilities: Spain (Sixth session, 19–23 September 2011), at para. 34. See also Committee on the Rights of Persons with Disabilities, Consideration of Reports Submitted by States Parties under Article 35 of the Convention: Concluding Observations of the Committee on the Rights of Persons with Disabilities: Tunisia (Fifth session, April 11–15, 2011), at para. 23; Committee on the Rights of Persons with Disabilities, Consideration of reports submitted by States Parties under Article 35 of the Convention: Concluding Observations of the Committee on the Rights of Persons with Disabilities: Peru (Seventh session, April16–20, 2012), at para. 25.
188.
The Special Rapporteur on Torture has stated: “States must adopt legislation that recognizes the legal capacity of persons with disabilities and must ensure that, where required, they are provided with the support needed to make informed decisions.” (Interim Report of the Special Rapporteur on Torture and other Cruel, Inhuman and Degrading Treatment or Punishment, July 28, 2008, UN Doc A/63/175, at para. 73.) Also see the Parliamentary Assembly of the Council of Europe, Resolution 1642 (2009) on access to rights for people with disabilities and their full and active participation in society, January 6, 2009, para. 7.
189.
“The Committee held days of general discussion on article 12 (Equal recognition before the law) of the Convention in 2009 and on article 9 (Accessibility) of the Convention in 2010 to support the formulation by the Committee of general comments on these issues. The days of general discussion were attended by representatives of States parties, civil society and others.” (“Status of the Convention on the Rights of Persons with Disabilities and the Optional Protocol thereto (Report of the Secretary-General,” July 7, 2011, Doc A/66/121, available at <www.un.org/disabilities/default.asp?id=712> (last visited February 4, 2013) [hereinafter cited as “Status of the Convention”]. And see MacAllumRon Chair, Committee on the Rights of Persons with Disabilities, “Call for Papers on the Practical and Theoretical Measures for the Implementation of Article 12 of the United Nations Convention on the Rights of Persons with Disabilities” (papers to be submitted by July 17, 2011), available at <www2.ohchr.org/SPdocs/CRPD/Call_for_papers_art12.doc> (last visited March 1, 2013).
190.
Kayess and French argue that uncritical assertions of the social model lie behind the IDC positions on decision-making capacity: “Ultimately, the CRPD has been most influenced by an uncritical, populist, understanding of the social model of disability. At times this understanding approaches a radical social constructionist view of disability, in which impairment has no underlying reality. While the central tenet of the social model – disability as social oppression – has not been superseded, it has been heavily nuanced and qualified by the last decade of critical disability studies, which has re-emphasised the realities of impairment as a dimension of the ontological and phenomenological experience of disability. If there is truly to be a shift to a coherent new disability rights paradigm in international law, it will be important that CRPD interpretation and implementation efforts penetrate beyond populist social model ideas to a more sophisticated understanding of impairment and disability in its social context.” See supra note 34, at 34.
191.
Some jurisdictions' supported decision-making mechanisms have attracted significant attention (for instance, B.C.'s regime under the Representation Agreement Act, supra note 150 (not a comprehensive alternative to guardianship laws, but rather a mechanism for individual appointment of a support person), and Sweden's regime of the “god-man”; see the World Report on Disability, supra note 13, at 138 (Box 5.1) (a form of ombudsperson assigned to offer persons with psychosocial disabilities a variety of supports). The arguments of the IDC for absolute displacement of guardianship or substitute decision-making went beyond any existing model. See “Abolishing Mental Health Laws to Comply with the CRPD,”supra note 121, at 160–166, esp. 161.
192.
Terry Carney observes, on the subject of evaluating options for reforming guardianship laws on the model of supported decision-making: “these are ultimately research questions which need to be settled in light of evidence about what is and is not helpful in the lived lives of people with impaired functional capacity, and with due regard to the hard lessons of past policies which demonstrate that policies often have unintended (and sometimes surprisingly disappointing) outcomes compared to those expected.” (“Guardianship, ‘Social’ Citizenship and Theorizing Substitute Decision-Making Law,” supra note 130, at 14) My point is that such research should also attend to the perspectives of those likely to be subject to, or vulnerable to, the laws under scrutiny.
193.
See, e.g., MackenzieC. and StoljarN., eds., Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self (Oxford: Oxford University Press, 2000) [hereinafter Relational Autonomy]; DownieJ. and LlewellynJ., eds., Being Relational: Reflections on Relational Theory and Health Law (Vancouver: UBC Press, 2011). See also Stefan'sSusan groundbreaking analysis of the power dimensions of incompetency determinations, “Silencing the Different Voice: Competence, Feminist Theory, and Law,”University of Miami Law Review47, no. 3 (1993): 763–815.
194.
See, e.g., McLeodC. and SherwinS., “Relational Autonomy, Self-Trust, and Health Care for Patients who are Oppressed,” in Relational Autonomy, id., at 259–279.
195.
I take this list of “philosophy's most cherished conceptions” from CarlsonL. and KittayE. F., “Introduction: Rethinking Philosophical Assumptions in Light of Cognitive Disability,” in CarlsonL. and KittayE. F., Cognitive Disability and Its Challenge to Moral Philosophy (Oxford: Wiley-Blackwell, 2010): 1–26.
196.
See Mental Health Act 2011: A Review, supra note 80, at 246.
197.
See also Janet Lord's discussion of the democratic deficit in global health governance (at and beyond the WHO), and the prospects of the CRPD's redressing this in some measure, in “Global Health Governance,”supra note 4, at 575–576.
198.
See RothmanS. M., “Health Advocacy Organizations and the Pharmaceutical Industry: An Analysis of Disclosure Practices,”American Journal of Public Health101, no. 4 (2011): 602–609.
199.
An account of recent implementation activities is given in the report “Status of the Convention,”supra note 171.
200.
See id. at paras. 23–24 for discussion of the activities of the Inter-Agency Support Group for the Convention on the Rights of Persons with Disabilities, and paras. 22–63 for a broader discussion of inter-agency activity as well as cooperation with states and civil society groups aimed at CRPD implementation. The document notes in particular that the WHO / World Bank World Report on Disability, supra note 13, “has been developed with the full participation of persons with disabilities and their organizations, and will help raise awareness of the rights of persons with disabilities” (para. 54).
201.
See “Status of the Convention”supra note 171, at paras. 15–20.
See “Status of the Convention,”supra note 171, at paras. 64–70. Also see “Multi-stakeholder partnerships,” at paras. 71–75.
204.
The cooperative capacity-building efforts of the Mental Disability Advocacy Centre are described at <http://mdac.info/en/what-we-do/capacity-building> (last visited February 4, 2013). Another striking example is Disabled Persons International's engagement in consultations with persons with disabilities and their representative organizations in Tunisia, in March 2011, in order to prepare a shadow report in the face of that nation's significant political instability during that period. Ultimately DPI prepared two shadow reports: available at <http://www.internationaldisabilityalliance.org/en/crpd-reports-0> (last visited February 4, 2013). On the role of the UN agency UNFPA (the United Nations Population Fund) in facilitating capacity-building among DPOs in Syria in December 2010, see “Status of the Convention,”supra note 171, at para. 62. Further UN efforts to build capacity among DPOs are described in the same document at paras. 55–63.
205.
World Report on Disability, supra note 13, at 138 (Box 5.1); GuernseyK., Convention on the Rights of Persons with Disabilities: Its Implementation and Relevance for the World Bank, Social Protection Discussion Paper No 0712 (The World Bank, June 2007), available at <http://siteresources.worldbank.org/SOCIALPROTECTION/Resources/SP-Discussion-papers/Disability-DP/0712.pdf> (last visited February 4, 2013). The latter report states (at 12–13):.
206.
Whilst Article 12 does not explicitly prohibit guardianship laws, it is anticipated that many States Parties will move away from traditional guardianship approaches, and/or utilize such procedures only in rare circumstances where an individual is in need of extensive or ‘one hundred percent support.’ It is therefore reasonable to expect that a number of client countries will need assistance in engaging in legislative reform initiatives to effect these changes, as well as assistance in developing programmes and policies to implement the obligation to provide supports to those requiring assistance to exercise their legal capacity.
207.
A rich example of such work is Shari McDaid and Sarah Delaney's “A Social Approach to Decision-Making Capacity,” supra note 157. In “Abolishing Mental Health Laws to Comply with the CRPD,” supra note 121, at 160–166, Tina Minkowitz discusses ongoing research into innovative supportive policies and practices, including an Indian study focused on traditional healing centres and the exploratory work of the U.K.-initiated Hearing Voices network, Intervoice (The International Community for Hearing Voices, available at <www.intervoiceonline.org/> [last visited February 4, 2013]). Also see the results of a broad-based consultation of persons with psychosocial disabilities concerning their opinions about and experiences of violation of CRPD rights, in DrewN., “Human Rights Violations of People with Mental and Psychosocial Disabilities: An Unresolved Global Crisis,”The Lancet378, no. 9803 (2011): 1664–1675. The article describes the WHO's QualityRights Project, which involves standardized assessment of human rights compliance in mental health facilities and social care homes.
208.
See ToppV., Lacking Insight – Involuntary Patient Experience of the Victorian Mental Health Review Board (The Mental Health Legal Centre Inc., October 2008), available at <www.communitylaw.org.au/mhlc/cb_pages/li_contents.php> (last visited February 4, 2013).
209.
The challenges raised by this imperative to the CRPD's status-based framework of rights and obligations are discussed in RibetB., “Emergent Disability and the Limits of Equality: A Critical Reading of the UN Convention on the Rights of Persons with Disabilities,”Yale Human Rights and Development Law Journal14, no. 1 (2011): 155–203, at 191–193.