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The Equal Rights Review The Equal Rights Review Promoting equality as a fundamental human right and a basic principle of social justice In this issue: ■ Special: The meaning of health equality ■ Disability equality in Europe, South Africa and the UK ■ Gender-based discriminatory ill-treatment in Moldova ■ The "floating" Uyghurs in China ■ Testimony from Bedouin women from Israel Biannual publication of The Equal Rights Trust Volume Six (2011) Contents 5 Editorial A Right to Health Equality: What Does This Mean, Exactly? Articles 11 Jarlath Clifford The UN Disability Convention and its Impact on European Equality Law 26 Olga Manole Discriminatory Ill-Treatment of Women in Moldova 44 M. Rayila The Pain of a Nation: The Invisibility of Uyghurs in China Proper Special 61 Gillian MacNaughton Healthcare Systems and Equality Rights 83 Nick O’Brien Law and “The Good Life”: Learning Disability, Equality and Healthcare in the UK 99 Jonathan Burns The Mental Health Gap in South Africa – A Human Rights Issue Testimony 117 The Women of the Negev: Testimony from representatives of a Bedouin Women’s Organisation Interview 127 Health Justice, Equality and Fairness: Perspectives from Health Policy and Human Rights Law: ERT talks with Norman Daniels and Paul Hunt Activities 141 The Equal Rights Trust Advocacy 148 Amal De Chickera Protecting the Human Rights of Stateless Persons: and Jim Fitzgerald Event Report 153 Update on Current ERT Projects 164 ERT Work Itinerary: July – December 2010 4 The Equal Rights Review is published biannually by The Equal Rights Trust. The opinions expressed in authored materials are not necessarily those of The Equal Rights Trust. Editor: Dimitrina Petrova Assistant Editor: Libby Clarke Advisory Editorial Board: Sandra Fredman, Colin Gonsalves, Bob Hepple, Claire L’Heureux-Dubé, Christopher McCrudden, Bob Niven, Kate O’Regan, Michael Rubenstein, David Ruebain, Sylvia Tamale Design and layout: Daina Gueorguieva © February 2011 The Equal Rights Trust Printed in the UK by Prontaprint Bayswater ISSN: 1757-1650 All rights reserved. No part of this publication may be translated, reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of the publisher, or a licence for restricted copying from the Copyright Licensing Agency Ltd., UK, or the Copyright Clearance Center, USA. Support the cause of equality The Equal Rights Trust is a charity relying on the support of the public. To make a donation online, please visit www.equalrightstrust.org, or send a cheque to the ofice address below. For donations by bank transfer, The Equal Rights Trust’s account number with Coutts Bank (UK) is: 07130988; IBAN GB43COUT18000207130988; Bank address: Coutts & Co., 440 Strand, London WC2R 0QS The Equal Rights Trust 126 North End Road London W14 9PP United Kingdom Tel.: +44 (0)207 610 2786 Fax: +44 (0)203 441 7436 [email protected] www.equalrightstrust.org The Equal Rights Trust is a company limited by guarantee incorporated in England and a registered charity. Company number 5559173. Charity number 1113288. The Equal Rights Review, Vol. Six (2011) 5 Editorial A Right to Health Equality: What Does This Mean, Exactly? If equality is understood as a fundamental health condition should not be – as a general human right and a basic principle of social rule – a ground of discrimination in areas justice (this is how it is described in the ERT such as employment. For example, in Hoff- mission statement), what does it mean in re- man v S. A. Airways (2000) the South African spect to health? How is health equality think- Constitutional Court found that an airline, able? In this issue of The Equal Rights Review, by maintaining a policy not to employ HIV- ERT searches for answers to this question. positive persons, was guilty of unfair dis- crimination on grounds of HIV/AIDS status. In a double interview published inside this is- In the second sense, a person should not be sue, two remarkable experts in health rights discriminated against on a protected ground (Paul Hunt) and health policy (Norman Dan- such as race, gender, or religion, in the area of iels) give us a taste of the legal, moral and health. For example, a hospital which ignores political complexities surrounding this ques- a call to send an ambulance to an ethnic mi- tion. To the extent that the issue of health nority neighbourhood, while it normally equality does not fall within any “discipline”, sends ambulances to other areas of the city it has become a professional ield in its own for the same emergencies, would be guilty right that has attracted researchers and prac- of race discrimination in the area of health. titioners coming from many different angles: A service providing treatment for HIV/AIDS health policy experts, medics, philosophers, which is not as accessible to homosexuals as lawyers, economists, political scientists, etc. it is to heterosexuals prima facie discrimi- Reframed in the terms of human rights law, nates on grounds of sexual orientation in the the question is what kind of an enforceable area of health. right to equality related to health is con- ferred to persons by the laws – as they are, or But some dificult questions arise in relation as they should be. to both types of discrimination. Regarding health status (as well as the related category At minimum, a right to health equality in- of disability) as a protected ground, surely cludes a right to non-discrimination in re- employers, service providers and others lation to health. This can be understood in can’t be required to treat persons with dif- two senses: that health status is a protected ferent health conditions identically in all ground of discrimination, or that discrimi- cases. A job may require an employee to have nation on a protected ground (which can also a health status that rules out certain condi- be, incidentally, health status) is prohibited tions, be they of a sensory, physical or men- in the area of health. In the irst sense, one’s tal health nature. Still, there are rules to be The Equal Rights Review, Vol. Six (2011) 6 followed to ensure that different treatment an ICD (implantable cardiac deibrillator) at which is unavoidable is not discriminatory. a cost of $40,000 as any other patient with In recent years disability equality law, as the same risk? Or would the denial of ICD be shown in Jarlath Clifford’s article in this is- discrimination on ground of disability? sue, has developed progressive approaches to answering this type of questions, and has From the unitary human rights perspective introduced the critical concept of reasonable on equality, as expressed, inter alia, in the accommodation as part of the right to equal- 2008 Declaration of Principles on Equality, ity. the right to health equality is “bigger” than the right to non-discrimination on the ground Many moral and political puzzles exist also or in the area of health. It includes an entitle- in respect of the right to non-discrimination ment to such healthcare which enables the in the area of health, including in the nar- person to participate on an equal basis with rower area of healthcare – the services of- others in economic, social, cultural, civil and fering diagnostic, preventive, therapeutic political life, as required by Principle 1 of the or rehabilitative interventions. It may seem Declaration of Principles on Equality. It also easy and unproblematic to ensure that such implies a duty of the authorities to develop services do not discriminate on grounds of a healthcare system aimed at realising this race, gender or religion, but problematic it right. If health is not (just) a tradable com- is, as a closer look would reveal. For exam- modity but a matter of rights and a public ple, should the accommodating of religious sector duty, it appears that equality in health needs in hospitals (special diet, religious or is best promoted through a publicly funded spiritual counsel, or expensive drugs, e.g. the heath care system, as recommended by the genetically engineered version of Factor VII WHO Commission on Social Determinants which is effective in causing rapid blood clot- of Health. And while it may be futile to try to ting and is required by a Jehovah’s Witness translate general principles on equality into awaiting serious surgery) be paid for out of more speciic health policies and practices, public funds or should it be the responsibil- the latter should be consistent with general ity of those concerned? It is even more chal- principles on equality. lenging to determine what would amount to discrimination in healthcare on the grounds Among the central issues of healthcare equal- of disability or age, or indeed on the ground ity, in particular related to equal access to of health status! As early as 1984, Aaron and healthcare, is the process of setting priorities Schwartz showed that in the National Health in the distribution of healthcare resources, Service (NHS) in Britain, there was no formal also known as healthcare “rationing”. The rationing rule about dialysis but an informal term is controversial partly as a result of the “understanding” that patients over 65 would continuing denial by many stakeholders that not be given dialysis, and patients over 55 rationing exists. It is easy to deny the exist- whose kidney failure was related to heart ence of rationing as in the most part it is in- disease and diabetes would be ineligible. Was visible: there is no public scrutiny and those the NHS in this case discriminating on the who make rationing decisions are rarely, if ground of age? To take a more extreme case, ever, accountable for the health consequenc- is a person in a permanent vegetative state, es for individuals as well as segments of the or a person in stage 4 of Alzheimer, who is at population.
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