The Right to Health

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Key note speech

• The Right to Health, The UN Disability Rights Convention and Persons with Intellectual Disabilities
  Helena Nygren-Krug, Health and Human Rights Adviser, World Health Organization
  

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Discussants

• The United Nations Perspective:
  Simon Walker, Advisor, Human Rights and Disability, Office of the United Nations High Commissioner for Human Rights

• The NGO's Perspective:
  Elizabeth Bauer, Secretary, Board of Directors, Mental Disability Rights International

• An Academic Perspective:
  Eric Emerson, Professor of Disability and Health Research, Lancaster University and Visiting Professor, University of Sydney (Australia)

Chairperson

• Jocelin Lecomte, Information and Research Counsellor, Gabrielle-Major, Lisette-Dupras and West Montreal Readaptation Centres for Persons with Intellectual Disabilities, (Canada)

Introduction

• Jocelin Lecomte

  The topic of the conference’s first keynote speech pertains to the right to health, the UN Disability Rights Convention, and persons with intellectual disabilities. Over 50 years ago, the constitution of the World Health Organization projected a vision of health as a state of complete physical, mental and social well-being. A definition of health that is more relevant today than ever. It recognized that the enjoyment of the highest attainable standard of health was one of the fundamental rights of every human being, and that governments have a responsibility for the health of their peoples, which can only be fulfilled through the provision of adequate health and social measures.

  But what is the link between health and human rights? Well, Jonathan Mann expressed it best when he said that human rights can dramatically affect health. Health can be dramatically worsened when human rights are ignored, and health and human rights can act in synergy with each other for global human betterment. And thus health and human rights are natural allies, in the quest to improve, in the fight to improve human conditions globally. This is very important, in light of the fact that persons with intellectual disabilities are known to experience some of the most difficult living conditions in the world, regardless of country income level, and are very often denied their right to health.

  So, we are very fortunate to have with us today Mrs. Helena Nygren-Krug, from the World Health Organization. Mrs. Nygren-Krug is the Health and Human Rights Advisor at World Health Organization (WHO). She is one of the leading experts and, might I say, advocates of the right to health. She’s Swedish by birth, Anglo-American by education. Mrs. Nygren-Krug trained as a lawyer at the London School of Economics, and did a Masters degree in human rights, then moved to Harvard to continue studying in human rights law. Before joining WHO, she worked at the Office of the High Commissioner for Human Rights, and the Carter Centre. She has carried numerous field assignments, most notably in Haiti and in Tanzania, following the Rwanda genocide. And so, it is with great pleasure that I give the floor to Mrs. Helena Nygren-Krug.

Key Note Speech: The Right to Health, The UN Disability Rights Convention and Persons with Intellectual Disabilities

• Helena Nygren-Krug

  Thank you very much, Jocelin. It’s a real honour and pleasure to be here with you.

  First, I would like to thank the organizers, the WHO Montreal Collaborating Centre. I’d also like to thank the Rajanukul Institute here in Thailand. And last but not least, the WHO Department of Mental Health and Substance Abuse, and particularly the Director there, and his excellent coordinators teams. Any of them could have spoken on this topic today; the Department has a very strong human rights focus, and that’s why I’m particularly delighted that I got the opportunity to give this presentation.

  I work as human rights advisor at WHO, in a department called the Department of Ethics, Equity,Trade, and Human Rights. I work on human rights across the organization and not only on mental health issues. So this is a great opportunity for me, and thank you very much for having me here.

  I wanted to give you an overview of the right to health, and I have an hour, but rest assured I won't take an hour, I will take less. I’m going to lay out some of the basics of human rights in the convention. But first, I want to say a few words about why WHO is working on health and human rights. Well, we do see it as an opportunity. We’re dealing with health in a very broad context these days, health in the context of development, in the context of poverty reduction, and we’re trying to work more cross-sectorily. So talking about health as a human right means that you can work across the government, because it’s an obligation of the government as a whole. We also have the opportunity to engage with a wide range of stakeholders, civil society groups such as many of those in the room, national human rights institutions, the Office of the High Commissioner for Human Rights, which is here, and others.

  We also see it as a need. We have one hundred and ninety three Member States, and all of our Member Sates have ratified at least one international human rights treaty that recognizes the right to health and/or other health-related human rights. Our job in WHO is to support our Member States and give them public health guidance that is consistent with their human rights obligations, or even better, promotes or reinforces their human rights obligations. And with the new convention coming up, obviously everything we do needs to be consistent and promote and reinforce the new Convention on the Rights of Persons with Disabilities.

  And the other reason why we are working on human rights in WHO is because we actually have to. We have an obligation to. We are a UN specialized agency, we’re part of the United Nations system, and the UN as a whole has the promotion and protection of human rights as one of the main purposes of why we exist in the first place.

  So, what are human rights? This is probably familiar to all of you, but Jocelin suggested that I go over the framework at this session, and then you will all be operationalizing these principles which you already do in your work and in your presentations. Basically, it’s important for us, at least in WHO, as we deal with Member States, to be very clear to these governments that it’s not us inventing these rights. It’s actually the governments that are generating these norms and principles through international standard-setting processes. It took a long time to negotiate the Convention on the Rights of the Child, it was shorter to negotiate the Convention on the Rights of Persons with Disabilities. But it was a process of negotiation, and that's something that's important to remember when we deal with governments, that it's them who have generated these norms and principles.

  The aim of human rights is really to protect the inherent dignity of every human being. All human beings are born free and equal, and this is the aim of human rights. Every human rights treaty has it in its preamble. That is the purpose of human rights. It's human dignity. And all human rights are universal. It means they apply to everyone, everywhere. They are inalienable and indivisible. That means that human rights are your birthright, whether you're born with intellectual disabilities or not. They are your birthright. Now, the environment in which you are born may determine your enjoyment of these rights. And that's the important thing, that this convention is making that distinction. Human rights are there, and it's the environment that needs to make it possible for you to enjoy your full human rights.

  All human rights are interrelated and interdependent. That means you can't separate one set of rights from another. To enjoy human dignity, you need not only the right to education, the right to work, the right to express yourself. You need all sets of rights. Civil, cultural, political, economic, and social. Human rights are primarily about the relationship between the government and the individual, that's the traditional paradigm of human rights. And so for us working in public health, that's a very useful paradigm, because public health is about creating those conditions in which people can lead healthy lives. And human rights also look at the relationship between governments and the people.

  Now, just going back historically a little bit. The human rights movement is relatively young. And the Universal Declaration of Human Rights is the first instrument that set out all the different human rights in an international document. That was in 1948, it was after the Second World War, where governments were shaken and realized that in fact we do need to have some global framework that sets out the relationship between people and governments, and governments can't always be trusted. We need to have some universal norms and standards upon which their performance should be measured.

  A declaration is a non-binding instrument. Most declarations like the Convention on Disabilities, were preceded by various declarations before. The Convention on the Rights of the Child was preceded by a Declaration on the Rights of the Child. But rather than moving towards a universal treaty on human rights, we had the Cold War, which overshadowed international relations, so rather than having a universal treaty on human rights, with civil, cultural, economic and social rights all set out on the same footing, we ended up having two separate treaties, one on economic and social rights, e.g. right to health, right to education, right to housing, right to work, and one on civil and political rights, e.g. freedom of expression, freedom from torture, right to vote, etc.

  And that dichotomy is still there today. When I talk to you about the right to health, you'll see it's not as mature and as clear as many civil and political rights. There have been very strong human rights movements, born in the west, such as Human Rights Watch, Amnesty International, that made a lot of noise around civil and political rights. When people hear human rights, a lot of people around the world still think about civil and political rights issues, and they think less about the right to food, the right to health care, and the right to education.

  Now, over time, other international human rights treaties were adopted, often responding to pressing human rights crises of the time. You had the International Convention on the Elimination of Racial Discrimination in 1965, the Convention on the Elimination of All Forms of Discrimination Against Women, adopted in 1979. That is a convention that is widely ratified, but has the most reservations. So a government can say “I'll be party to this treaty, but I don't like this Article and I don't like this Article”, and they can put reservations. Now there are limits to these reservations, but you need to look carefully to see what governments put in terms of these reservations to clearly see what they're bound by.

  The Convention on the Rights of the Child is the most widely ratified human rights treaty. The Convention on the Rights of Migrant Workers is another convention. Only some sending countries have ratified no receiving countries of migrant workers yet. And important today, we have the Convention on the Rights of Persons with Disabilities that was adopted last year, and has not yet entered into force. It needs to have 20 ratifications to enter into force.

  Now, this was another response to a pressing human rights emergency, where there was a sense that people with intellectual disabilities remained invisible on the human rights agenda, although all human rights treaties applied to them. The issue was neglected, it remains neglected, and this is a way to move the agenda forward, and also to see specifically what people with disabilities require in terms of measures to be taken by governments, so the Convention is tailored around the specific needs of people with disabilities. As we heard this morning, it doesn't necessarily create new rights, but it elaborates on various rights, such as the right to health.

  And so, as I think Dr. Bertolote was saying this morning, with the international classification system that we use in WHO in terms of classifying disabilities and diseases, that's moving forward, that's evolving. In the same way, I think, the human rights framework is moving forward and evolving and responding to needs that haven't been addressed, and is becoming more inclusive. And I think that, although human rights are in many ways, idealistic, they are also human created, they have their shortfalls. I think the fact that people with disabilities have been invisible for too long on the human rights agenda has been a serious flaw of the human rights system.

  So, of course human rights are not just up there on the international level in terms of various treaties and conventions. You also have regional human rights instruments. In the African Region, you have the African Charter on Human and People's Rights, as an example. We have many African participants here today. In various regions, there are regional human rights instruments, and there are specific treaties and instruments relating to disabilities at the regional level. And importantly, human rights should start at home, so the national constitution hopefully should enshrine the right to health, and should enshrine freedom from discrimination on the basis of disability and on the basis of other grounds such as sex, ethnicity, etc. We've looked at national constitutions at the WHO and we've found over 100 today that enshrine health as a human right, so this is promising.

  Now, in an ideal world, there would be consistency between this international human rights legal framework, the national constitution, the laws and state policies that are set, state practice, and you would have people who are healthy and happy. And, the arrows go the other way as well, because the whole idea of human rights is about participation and democracy, and inclusiveness, that people would influence state practice, influence national laws and policies, influence the national constitution, and be part of the development of international human rights law. I think that the Convention was quite ground-breaking in terms of the strong voice and leadership of the organizations working in this area, non-governmental organizations, civil society organizations, many of which are here today, that really led the process to get this Convention off the ground.

  Now, I'm going to talk about the right to health, but before I do so, I just want to make the point that Jocelin just did, that health is connected to everything else, all human rights. That's why it is difficult to talk about health and human rights, so that's why I'm very happy to narrow in on this. We talked about health as not merely the absence of disease, but social well-being. If you want to have social well-being, the right to work is essential for people with disabilities, for rehabilitation, but there are so many other rights that are essential, so I think every single human right is crucial for us to talk about human dignity in the context of intellectual disability. So that is why before going into the right to health, I just wanted to look at the list of the range of rights.

  At the bottom right, we've got the right to association. We can associate. We're here today, we can talk about these issues. When we think of groups of users, of family members that have organized themselves to push the agenda forward, where would we be if we didn't have the right to association in this area? The right to education is obvious. The right to an identity is there, on the right side, and that's explicitly mentioned in the Convention as a crucial issue in the context of the rights of children to preserve their identity. So, there are a whole host of human rights that are key when we talk about intellectual disabilities and the right to health.

  And why do we like human rights? Well, because they give rise to obligations, and obligations can be divided into three categories. The obligation to respect, the obligation to protect, and the obligation to fulfil. So, the right gives rise to an obligation, and behind the obligation is the duty-bearer. And the obligation to respect means basically "do no harm", "hands off", refrain from interfering with the enjoyment of the right to health. If people with intellectual disabilities are enjoying their rights, then the government should not be interfering and imposing measures that would interfere with their ability to enjoy their human rights.

  The obligation to protect is about regulating non-state actors, so the government has an obligation to ensure that non-state actors, the private sector and other non-state actors, are not interfering with people's enjoyment of their human rights. For example, in the field of intellectual disabilities, we heard about issues around insurance. There are a lot of private health insurance companies out there, and they need to be regulated to ensure that they aren't discriminating. The obligation to fulfil is the government's obligation to move forward, to put in place concrete measures, to put in place legislation, policies, budgetary measures, and to move forward in a substantive way.

  So, as Jocelin put it: Very importantly, we have the right to health in our WHO Constitution of 1946, and this was the first time that health was articulated as a human right in an international instrument. Our Constitution set out the enjoyment of the highest attainable standard of health as a fundamental right of every human being without distinction of race, religion, political belief, economic or social condition. And then our Constitution of WHO defined health very broadly, as Jocelin has said, not just about the absence of disease or infirmity, but a state of complete physical, mental, and social well-being.

  Now, just to go through chronologically, as I mentioned, we had the Universal Declaration of Human Rights, which was the birth of the human rights movement in 1948, and it reiterated health as a human right. And then there was the Cold War, and we ended up having two separate treaties. One on economic and social rights, one on civil and political rights. And as I mentioned before, civil and political rights moved forward on the human rights agenda very strongly, and economic and social rights were sort of left there on the side, and are now trying to move forward after the end of the Cold War, where governments have recognized that all human rights are interrelated. But there's still a lot of catching up to do in the field of economic, social and cultural rights.

  Now, we did have in WHO, the Declaration of Alma Ata, which recognized the right to health and the World Health Declaration. But in the field of international human rights law, there had not been a real "massaging out" what it meant, so it was more of an advocacy slogan that we were using. Everyone has the right to health, health is a human right. But it wasn't completely clear what people can expect, and what governments are supposed to do. That changed with the end of the Cold War, where in the international human rights system, you saw economic and social rights moving forward.

  In 2000, we had, importantly, the development of something called the General Comment on the Right to Health, and it was the Committee on Economic, Social and Cultural Rights, which monitors states' compliance with the International Covenant on Economic, Social and Cultural Rights, which sat down and WHO participated, and many non-governmental organizations (NGOs) and governments and others, to set out more clearly what do we mean by the right to health. And I'm going to talk more about that in a minute.

  And then we had mechanisms appointed by the UN Commission on Human Rights, which is now called the UN Human Rights Council. Importantly there was a Special Rapporteur on the right to health appointed in 2002. In 2005, he did a report on the Human Rights of Persons with Mental Disabilities, and presented that to the General Assembly and to the UN Human Rights Commission. And so, he's moved forward the right to health agenda very concretely as well. So, a lot of things have been happening since the end of the Cold War, in terms of moving forward health as a human right.

  Now, the Covenant on Economic, Social and Cultural Rights. What does it say? This was in 1966, and it said that state parties recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. Then they gave an example of steps to be taken. They talked about the healthy development of children under A, they talked about environmental and industrial hygiene in B, they talk about prevention and treatment and control of diseases in C, and then they talked about creation of conditions to ensure to everyone medical service and medical attention in the event of sickness in D.

  In 2000, the General Comment was issued which elaborated on this in a more up-to-date fashion. What does the right to health mean, in 2000? This General Comment sent some clear messages. The right to health is not just about health care, it's also about underlying determinants. It's about access to water, sanitation, food and nutrition, housing, healthy occupational environmental conditions, education, information, and it even said explicitly sexual reproductive health issues. So, it set out quite a broad framework to consider when we talk about health as a human right.

  And then it said that, in terms of government steps they need to take to realize this right to health, we need to look through this prism of AAAQ: availability, accessibility, acceptability and quality. What does that mean? It means that the health facilities, goods and services, and also the underlying determinants should be available. That includes trained health professionals. They should not only be available, they should also be accessible. And accessibility was broken down in four dimensions. The first of these was economic accessibility, affordability. The second one was non-discrimination. That there should be access to health facilities, goods and services, and underlying determinants on the basis of non-discrimination such as on the grounds of sex, race, ethnicity, disability, etc. There should be physical accessibility. That related both to urban and rural, but also people with disabilities accessing facilities. And fourthly, access was about information accessibility.

  So they broke down accessibility in these four dimensions. And it's interesting, because when we look at the Atlas that we are launching, it also analyzed accessibility through this prism, and saw what some of the key barriers to accessibility were. Affordability, non-discrimination, ethnicity was there, and also the whole dimension of urban/rural and geographical access.

  A third dimension of the right to health was acceptability. And that relates to life-cycle requirements, to gender sensitivity, to cultural sensitivity. And the last one was quality. Obviously, health facilities, goods and services have to be of good quality. So that was the prism. When governments are reporting, they need to be showing how the health system is moving forward under this AAAQ framework.

  Now, as we heard, the Convention elaborates more on the right to health in terms of the specific needs and rights of people with disabilities. Article 25 sets out “that states' parties recognize that persons with disabilities have the right to enjoyment of the highest attainable standards of health without discrimination on the basis of disability.” And it says “states' parties shall take appropriate measures to ensure access to persons with disabilities to health services which are gender sensitive, including health related rehabilitation. In particular, state parties shall, and then it gives a list of things. And the first one it talks about free or affordable health care of same range quality and standards as other parts of the population. That's A, but B talks about specific health services that may be required by persons with disabilities. So it states that there should be the same access to general services, but there may also be specific services which are needed.

  The third, C, talks about the importance of community based services, saying that community services must be as close as possible to communities. Then D talks specifically about the role of health professionals, and urges health professionals to provide same-quality care, including on the basis of free and informed consent, and also talks about the importance of health professionals raising awareness of human rights for people with disabilities. And I know that Simon Walker will talk about this particular issue of free and informed consent, so I won't go into that.

  Then, it talks about prohibiting discrimination in the provision of health and life insurance. And lastly it talks about preventing discriminatory denial of health care or food. So it does take the whole framework of the right to health, but signals some important markers for this area of disabilities.

  Now, of course these human rights cannot be realized overnight, and so there is an important concept of progressive realization, and that's to make it realistic and pragmatic. That when governments ratify these treaties, it's not like, “Tomorrow we're going to change everything in our country, and everyone will be healthy and happy.” No, it is a commitment to take steps, individually and through international assistance and cooperation. And the principle of progressive realization recognizes resources. It says “states must move forward with the maximum available resources, with a view to achieving progressively, the realization of these rights”. So, the point is to be pragmatic, and recognize that of course these are standards that we need to strive towards, but the steps taken do have resource implications.

  But it doesn't mean that governments can say “We don't have the resources. Too bad”. There is a commitment to show deliberate, concrete and measurable steps. So when the governments come before the committees, the Committee on the Rights of the Child, or the Committee on the Rights of Persons with Disabilities, when this is set up, they are going to have to show what those deliberate, concrete targeted steps are.

  It is important to distinguish between government incapacity and government unwillingness. You can have a government that is very poor, that has a debt burden, that has structured adjustment programmes imposed upon it, and has very few resources but is very committed and is really trying, with its meagre resources, to make a difference. That's a government that has an incapacity problem, but is really willing. And then you have governments that are very rich, and could do a lot, but are not really committed, that have other priorities such as investing in defense, or the tourism sector, or something else. That's a government that is unwilling, not a government that is incapable, so it is important to distinguish between the two, and it's not a question of being a rich government, in terms of realizing the right to health.

  And so the importance of statistics and data collection is important when we are talking about monitoring governments' performance, and the Convention on the Rights of Persons with Disabilities really signals this in a whole provision. I think that here the Atlas really is a starting point, to move this forward in a way so we can monitor what governments are doing when the Committee is set up and governments put forward their reports. And then it's important to use indicators, and this is something that is being used more and more when it comes to human rights monitoring, and different types of indicators.

  In the human rights treaty bodies, they're talking about different types of indicators, structural, process, outcome indicators. Structural indicators are about what type of legislation, what type of policies, what type of institutional mechanisms need to be in place. Process indicators are the steps needed to realize the desired outcomes, the services that are available, and the outcomes or the results, and we need to look at all these pieces. The structural piece is very important when it comes to showing that governments are doing their best, because that is where they clearly have a role to set policies and legislation and put institutional mechanisms in place.

  So, it is important to measure the steps. Now, all this human rights talk gets Ministries of Health a bit jumpy because it sounds very much like we're going to monitor and we're going to look at their performance. The whole right to health framework can also help Ministries of Health. As we know, Ministries of Health are often under-resourced at government level, and if you talk about health as a human right, it can put health higher on the political agenda of the government. It can leverage attention and perhaps even resources.

  Human rights have been recognized as the first priority of governments. The World Conference on Human Rights of 1993 set this out that human rights are the first priority of governments. There are other priorities, security and everything, but human rights are the first priority. Right to education, right to health, right to housing, freedom of expression, etc. It provides a robust framework, especially for WHO dealing with 193 member states. Governments come and go, so it provides a robust and long-term framework for us to link our work when we are dealing with health systems, and to say that this is enshrined in international and national law, there are certain markers, this is what you are under obligation to do, and let's move in this direction.

  The right to health means it's an obligation of the government as a whole, it is not just on the shoulders of the Ministry of Health. The Ministry of Finance, the Ministry of Planning, they are all accountable under the right to health. So when it comes to a question of resources, which it always does, the point to make is that the Convention on the Rights of Persons with Disabilities is also the obligation of the Ministry of Finance and the Ministry of Planning, not just the Ministry of Health, and so let's move forward together and make it happen.

  There is the obligation to protect, which I talked about. Respect, protect and fulfil, and as we're dealing with health, we find there are so many actors, today, in health, in this globalized world. There are so many we hardly know who's around at country level these days. But it does give a stewardship role to government. The government is the primary duty-bearer, and the government must regulate to ensure that non-state actors act in conformity with health rights.

  Another way which can help Ministries of Health, is that there are these monitoring mechanisms to enhance accountability. So that the government can say, “We need to move at national level because we're actually going to go up for our report to the Committee on the Rights of Persons with Disabilities, and we need to make sure that we're actually making progress.” That can actually help the Ministry of Health to move forward.

  Regarding the monitoring process, I just wanted to mention that all these UN Human Rights Treaties have monitoring bodies. This is true for the Convention on the Rights of the Child, and the Convention of Elimination of Discrimination Against Women. When the Convention on the Rights of Persons with Disabilities enters into force, a committee will be set up shortly. And it will be this type of process where you have a cycle of monitoring, and there will be an initial report by the government once it has ratified, but then every few years it will have to submit a report, so that's the box on the top left. Submitting a state party report. And then it will be reviewed by relevant bodies. WHO can provide input. Specialized Agencies are even explicitly mentioned in the Convention. Civil society groups can provide shadow reports and other types of information to reflect what the government reports, as well as additional information, or even have contradicting information.

  And then there is a plenary session. There on the right hand side in the middle. Constructive dialogue, it's called, between the treaty body and the government, where there is an exchange, and the committee will look at the provisions of the Convention, it will look at the laws and the policies and the practices that the government presents, and say “This is where we see discrepancies or need for improvement.”. And then at the end there are concluding observations that are issued, where the committee says “Next time, when you come back in four years time, we would really like to see progress in this and this and this.” Then there will be follow-up to the recommendations by the government at the country level. There are also WHO and NGOs and other UN agencies have a role to support the government. That's usually WHO's role, to work to support the government in implementing recommendations. And the cycle commences again. We have to prepare the state report, submit the state party report, and it keeps going like this.

  And I think that it's a great opportunity for all of us, when the Convention comes into force, to bring forward information, to bring forward good practices, model legislation, whatever we think works in countries, and share with the Committee to really make this a dynamic process.

  Now, key, in terms of enjoying the right to health, is the whole notion of non-discrimination and equality. And equality and non-discrimination are two sides of the same coin. But I wanted to just disentangle some of the terminology that we use, and that are mentioned in the Convention on the Rights of Persons with Disabilities.

  In public health practice, we use the term "stigma" a lot. Now, stigma is about prejudice. It's about what we carry in our heads, for all sorts of reasons. Whether it's our upbringing, or whatever, there's stigma in the heads of everybody. Equality is what the Convention talks about, which means that everybody is equal before the law, and are entitled to equal protection of the law. And discrimination is articulated as, “Any distinction, exclusion, or restriction or preference, based on ...", and then there are various grounds, but disability is a key one for the Convention on the Rights of Persons with Disability. There's also race, sex, religion, political affiliation, etc. “Which has the purpose or effect of nullifying or impairing the enjoyment of rights.” So, it's not any measure. It's those measures that actually are detrimental to the enjoyment of rights. It also talks about reasonable accommodation, and that's at the individual level, ensuring that steps are taken that are necessary and appropriate, to modify and adjust the environment, to ensure that persons with intellectual disabilities can enjoy their full human rights.

  And then, beyond that, the Convention talks about special measures to ensure de facto equality, so equality cannot just be formal, in terms of what the law says. We really want equality in practice, and special measures will need to be taken to ensure that there is full enjoyment of equality. So these are some of the terms that are in the Convention, all aimed towards ensuring full equality.

  Now, my last message I want to send is on the whole notion of a human rights based approach. The UN system has been mandated to ensure human rights mainstreaming across the UN system. And it was really in the UN reform programme, led by Kofi Annan when it was made clear that human rights is not just for lawyers, sitting in some part of the UN. It is part of peace and security, development, humanitarian affairs, etc.” And so this whole talk about a human rights based approach took off.

  And in the UN system, we have come to some understanding of this, and of course there are many human rights based approaches. When you ground your work on human rights, you are using a human rights based approach. But when it comes to programming by the UN system, we came up with these three pillars of what we mean by human rights based approach. And they were set out as 1) outcome, 2) process, and 3) capacity building.

  Whatever we do in the field of development or health, should be about realizing human rights, realizing the right to health, realizing the right to education, realizing the right to work, to housing, etc. So, that's the outcome, and it's not just about the outcome, it's also about the process. That human rights principles should guide us in the process towards realizing our development outcomes in the UN. And key principles in the Convention on the Rights of Persons with Disabilities include full and effective participation, inclusion, equality and non-discrimination, respect for differences and acceptance of persons, etc.

  So there are principles that need to be there every step of the way as we are trying to reach the outcomes. And this becomes quite process oriented, recognizing that process is equally as important as outcome. And that's tough for us, because we're always under pressure from donors to show concrete quick results with cost effective interventions. And it's moving toward saying, well actually, the whole process is important, and we should also have indicators to show how effective participation is. And so this is a bit of a paradigm shift, I think, for us.

  The third pillar is about capacity building. What we do in development corporation or public health, should be about building the capacity of rights holders to claim their rights, and duty bearers to fulfil their obligations. So, in terms of human rights programming in the UN system, and examples of methodologies, I'll stop here. It's still work in progress. But the whole idea is to look at the underlying, immediate and root causes of some of the issues we're dealing with, and not just addressing them upstream.

  So, for example, the Atlas identifies services that are sometimes available but they're too far or unaffordable. I think this is the start in terms of what are the issues, and doing the causal analysis of why this happening. Those are some of the immediate causes. What is underlying that? Is it a lack of commitment by government, what are the root causes, is it poverty? Is it structural causes? Is it underlying discrimination?

  And then, importantly, I think, the Atlas also says that there are a whole range of actors. That's very good. And that's a potential opportunity. But there's also a lack of clarity in terms of “Who is responsible for what?” And so the whole issue of role/obligation analysis, and analyzing who are the rights holders, and who are the duty bearers in order to address the issue at stake. And identifying their corresponding entitlements, and their obligations.

  The human rights based approach is always putting the individual at the centre as the rights holder, and then looking at who are the various rights holders and duty bearers that can effectuate change. This may be different depending on the issue one is dealing with, but often we have the family close to the individual, and the family is often both a rights holder and a duty bearer.

  And then the third pillar of the human rights based approach, the whole issue of capacity development, starts with a capacity gap analysis. Looking at what the issue is, looking at the claims and duties at stake, and then considering what are their resources: financial, technical, and human. Are there risks arising for the rights-holders in terms of making claims? Are there risks for the duty bearers, in terms of fulfilling their obligations? What are the duty bearers authority? Do they have the authority to do things? Maybe there is goodwill but they don't have the authority. Do they have the right attitude and motivation?

  This is just work in progress in terms of trying to operationalize rights in programming to analyze issues, to look at who are rights holders, who are duty bearers, and to move forward to fill capacity gaps. And I think the overall understanding is that the human rights approach leads to a deeper, most robust analysis of power relationships.

  And then, at the end, we're talking about capacity development. We want the individual, the person with intellectual disabilities, that we're talking about today, to be at the centre. And that there are capacities for that person to be empowered, and for families and other people who are advocating and promoting the rights of persons with disabilities to be empowered and capacities for duty bearers to be accountable. And that's where WHO works very much with the duty bearers, with the member states, with the governments to ensure that their capacity is there to be accountable, in terms of fulfilling their obligations, and also raising awareness among rights holders to claim and exercise their rights, so that we can have the right to health and other health-related human rights realized.

  So, at the end, I just wanted to give you the value-added. It sounds maybe a bit instrumental, but I want to underscore the value-added of a human rights based approach. As I said before, we're dealing with 193 member states in terms of WHO. They're all very diverse, in terms of culture, religion, approaches to issues, and so it is helpful to have universally recognized values enshrined in international law. And so I think the Convention is going to be a very powerful framework to ensure that we move forward more consistently together and that way, we're stronger when we actually can amplify each others' message in a consistent way.

  I think that the rights based approach also shifts and recognizes persons with intellectual disabilities as rights holders, which many already have a long time ago, but it does give it the status of international law, and that is an empowering strategy for health. It moves away from charity or needs based to rights that need to be recognized, and operationalized. We're far behind in terms of moving this agenda, as I said before on the human rights agenda.

  Rights give rise to entitlements, generate corresponding obligations, and there are monitoring and enforcement mechanisms. There are the committees that monitor the compliance of governments at the international level, there are regional mechanisms, and increasingly at the national level. There are national human rights institutions in over 100 countries around the world, and with the Convention, they also need to become a lot more active on disability rights. And this does help accountability. I think that all of us working in public health do feel that the whole issue of lack of accountability is a major stumbling block to make things happen.

  So I think it's a tool, human rights, there are many tools, but it's one important tool in our toolbox to generate systemic change in law, policy and practice, and to ensure that people with intellectual disabilities enjoy their full human rights. Thank you.

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• Jocelin Lecomte

  Well, thank you very much, Helena, for a great overview of the right to health, UN convention, as well as WHO’s work on this issue. I agree that, as you stressed, the human rights based approach, which also was referred to in the Way Forward in the Atlas, must be present in the development of all policies and plans regarding persons with intellectual disabilities.

  Of course, we have the pleasure today to have a panel to react to and discuss this subject. Actually, we have three discussants. Each discussant will be commenting on Helena’s address from a different perspective. The first perspective will be that of the UN High Commissioner’s Office, followed by an NGO active in the field of human rights and mental disabilities. And last but not least, we will have a perspective from an academic researcher, who has a strong interest in low income countries but who has also been involved greatly with research involving persons with intellectual disabilities, children, families, and so on.

  Each discussant will have 15 minutes to react to this keynote address, and hopefully we will have a little bit of time to take some comments from the floor. Our first discussant is Simon Walker, who is Advisor on Human Rights and Disability, at the United Nations Office of the High Commissioner for Human Rights in Geneva. The focus of Simon’s position is specifically on the promotion of the Convention on the Rights of Persons with Disabilities, among states, and within the United Nations, civil society organizations, and national human rights institutions.

  Prior to working as the Human Rights and Disability Advisor, Simon has worked within the United Nations since 1997, on a range of human rights issues including legal protection of economic, social and cultural rights, human rights in business, and human rights and globalization. Simon, I give you the floor.

The United Nations Perspective

• Simon Walker

  Good morning, everyone, and thank you for giving me this opportunity to speak about the UN perspective on the right to health of persons with intellectual disabilities. And the UN perspective on the right to health immediately takes me to the Convention on the Rights of Persons with Disabilities. As you know, this opened for signature on the 30th of March this year; it was adopted in December last year. It attracted the highest level of signatures on the first day of opening for signature of any UN treaty. We now have 118 signatures, which means that we also have 118 countries who are very eager to understand the complexities of the Convention and how to implement it. In fact, some countries, I think many countries are struggling with some of the issues, and obviously the right to health is among them.

  As you know, persons with intellectual disabilities quite often suffer grave and severe breaches of their right to health, being subject to deplorable conditions in institutions at times, insanitary and inhuman institutions as well, confinement sometimes against their will, taking medication and sedation rather than being offered counselling services, and forced idleness at times. This is coupled with other problems such as lack of family support, lack of community services, lack of access to schooling, abusive guardianship, and other issues which really highlight the importance of respecting the right to health of persons with intellectual disabilities.

  The Convention on the Rights of Persons with Disabilities seeks to provide a comprehensive approach to dealing with this issue. Helena’s gone to great lengths to do an excellent job, I think, in describing and setting out the right to health, including the right to health as described in the Convention. I really just want to pick up on one point she raised, and I think it’s a very important point. What’s the shift? What does the right to health change, what does considering health as a human right, the right to health of persons with intellectual disabilities, what does this change? And Helena said it, and I’ll emphasize it, I think it’s really changing the focus, it’s shifting a focus onto the individual, onto the person. And a person who has a right to live a life in dignity.

  And I think that this really reflects the overall scheme on the Convention on the Rights of Persons with Disability. We often say that the Convention is a paradigm shift, and what we mean by this is it’s a shift in approach to disability. It’s moving from a medical approach, where persons with disabilities are seen as objects, objects of medical treatment, or a social welfare approach, where persons with disabilities are seen as objects of social welfare or of charity, to a rights based approach. And that rights based approach really puts the individual in the centre, in focus.

  It moves away from disability, to the individual. The focus becomes the individual. And in fact disability is seen under the Convention much more as a question of the environment, of society. Disability can in fact come from disabling attitudes in society, negative attitudes about disability in society. And it can come from environments, which block access of persons with disabilities to society. And importantly, it changes relationships. It moves relationships to focus on the individual, so it changes relationships of doctor and patient, it changes relationships of guardian and ward, and it changes relationships of government and individual government citizens.

  And I’d just like to quote the words of Mary Robertson, ex-president of Ireland, also a former High Commissioner of Human Rights, my former boss, and I think her words put it quite well. “The most important tool in tackling inequality is to enable those experiencing it to remedy the power relationship, to take some control. This is a concept of rights that requires those furthest from the cabinet table to own the rights that are owed to them by virtue solely of their humanity. Ownership of this kind enables them to describe their situation, then to challenge it, then to ensure that any decisions taken in the organization and the ordering of their lives are made by and with them, not about and for them.” And I think that quite well describes this shift from a medical/social model to a human rights model.

  I just want to describe this through one aspect of the right to health in the Convention. Helena laid out the Article on the right to health in the Convention, and as she noted, one aspect of this is the right to free and informed consent for medical treatment. What does this mean for persons with intellectual disabilities? And I think it goes back to what I was saying, it’s a shift, it demonstrates the shift that we’re trying to achieve through the Convention, to focus on the individual. And I think that this is important, because obviously there have been abuses in the past through medical treatment, of the right to health of persons with intellectual disabilities.

  But I don’t want to underestimate the complexities of this. For example, how can a medical practitioner ensure that free and informed consent has been achieved? How does a medical practitioner ensure that this happens, for example, for someone with a severe intellectual disability? Similarly, another complexity is it forces us to reconsider terminology. Terminology such as involuntary treatment, or non-consensual treatment, often used, now have to be questioned in light of the new Convention.

  Importantly, however, the Convention does give us some guidance on this. I’m looking for guidance not in the Article on right to health, but in another part of the Convention, and this is a part of the Convention which reaffirms that everyone with disabilities has legal capacity, and also has the right to support, including support for decision-making. Here I’m talking about support for decisions on free and informed consent for medical treatment. What is supported decision making? Supported decision making challenges old views of how decisions could be made, particularly the old view of guardianship, where a right to take decisions was taken away from a person with a disability and given to the guardian. Now obviously, the guardian might be acting in the best interests of the person, and maybe it might not necessarily lead to a breach of human rights, but in other situations this has actually led to quite some severe problems.

  With supported decision making, the presumption is always in favour of the person with the disability, even though that person might need some support in making that decision because of the particular situation. At times, an individual might be in such a situation where he or she requires total support in order to make a decision. And in some ways I guess this is almost approaching the old system of guardianship. Where someone really has to assist the person to totally make the decision. But there is still a difference, and the difference is that the focus is always on the individual.

  If I could just give one example, a recent report issued by UNESCO, the United Nations organization dealing with education, science and culture, on free and informed consent, gives the example of a teacher called Susan who developed Alzheimer ’s disease late in life. Susan was a teacher for most of her life, and the school wanted to run a programme raising awareness of Alzheimer ’s disease, and part of this was to use video footage that the family had of her life. Susan was in such a state where it was impossible for her to make decisions, and so they were faced with the problem of how to find consent from her for use of this video material. What happened was a family member built up a picture of her life, her life as a teacher, her life as someone who wanted to inform people about important issues for them, and they convinced the school that she would have wanted the school to use this video footage. And, in fact, this is what happened, and the footage was very useful.

  Now, of course this is not dealing with medical treatment, but it does give an example of this shift, if you like. It wasn’t a question of the family member coming and saying, “Well OK, I give permission to use it.” The family member really had to focus the decision on whether to give consent to use this material on the wishes of Susan, in this case.

  It’s clear that this is very challenging. I certainly don’t want to underestimate the challenging nature of this, and I’ll just identify three challenges. First of all, there is a current lack of legislative and policy framework around the world that states can rely on when they’re trying to implement this aspect of the Convention. There are some good examples, but very few. I’ll give the example of British Columbia in Canada, which actually has a framework, but there are very few countries in the world who do, and so there’s great work to be done, at the level of law and policy in order to develop frameworks for this to be effective.

  Another challenge is of course the need to gather and to share good practice on freedom from consent for medical treatment in the area of rights of people with intellectual disabilities. A third is a developmental issue. Many of the models that do exist tend to come from North America or from Europe, and I think there’s a challenge to move those models into different countries, countries which might have different levels of development, which might have different levels of poverty, which might have different cultures.

  On a positive side, countries that have a strong community base actually already have their own community structures to make supported decision making more effective. I think each country really has to work on those aspects already in the culture and in the country to make these aspects work.

  Also, as Helena said, the Convention realizes how things don’t happen overnight, and there is this principle that is the understanding of progressive realization of human rights. And so it’s not necessary that we have to have a perfect world tomorrow, but we have to start planning tomorrow, so that progressively over time we can get to a stage where the enjoyment of human rights is actually fulfilled. This might take a period of time. We have to plan steps to ensure that this does in fact happen, that we are going in the right direction.

  So, I just wanted to give that one example of this shift, as I say, from disability to the individual. The importance of placing the individual at the centre of how we look at disabilities and that individual as a person who has a right to live in dignity, a right to be free from discrimination, and a right to equality. As I say, I think there are many challenges, developing legal and policy frameworks, gathering good practices, sharing good practices, and also looking at different levels of development and what implementing the Convention and the right to health in the Convention means for different countries.

  On this level, I’m pleased to say that the office I work for, the United Nations Human Rights Office is planning early next year to start work with the WHO on monitoring psychiatric institutions and monitoring the right to health of persons with intellectual disabilities and psychosocial disabilities. And hopefully this will be one way to assist in making this more easily implementable.

  I think we’re very much at the beginning of a process, and so I think slowly we will gather the practice to make this realizable. So I’d like to conclude by thanking the organizers for giving me this chance to be here as a human rights practitioner, talking to you as health practitioners, as government representatives, and as people working in health policy. I really think that you are the people who can take this process forward, and realize and help lead to the implementation of the Convention.

  Thank you very much.

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• Jocelin Lecomte

  Thank you very much, Simon. Our next discussant is going to offer a perspective from an NGO active in the field of human rights. We have the pleasure to have with us today Elizabeth Bauer, who is Secretary of MDRI, Mental Disability Rights International, which is a human rights organization dedicated to the international recognition and the enforcement of the rights of persons with mental disabilities.

  Mrs. Bauer has been involved many, many years in this field, and has trained activists in more than 18 countries in Latin America and Europe, on behalf of MDRI. She has co-authored reports on the rights of persons with mental disabilities, pertaining to Hungary, Russia, Turkey, and Romania. She has advocated the legal and human rights of all persons, especially of persons with disabilities, for over four decades. But most importantly, Mrs. Bauer is the mother of four children, each of whom has experienced disability, and one of whom is a recipient of public mental health services in Michigan, United States. Mrs. Bauer?

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The NGO's Perspective

• Elizabeth Bauer

  Well, thank you very much. It’s wonderful to be here and thank you to all who worked so hard to organize this marvellous meeting of people from all the WHO regions. I think together we can make an incredible difference.

  The new Convention is a complement, as we heard earlier this morning, to existing human rights laws. In addition to Article 25 which deals with access to affordable, available, accessible quality health care, there is a provision that calls for civil society, and people with disabilities in particular, and their families, to participate fully in all aspects of the development and implementation of policies, programmes and legislation to implement the Convention.

  Every person in this room has a huge assignment to organize and advocate for the full implementation of this remarkable document that has been developed, not to provide, as you heard earlier, new rights for people, but to articulate and say in very clear words, how the human rights apply to people who have been labelled as having a disability.

  As I said, I’ve been around for a long time, and I really have come to believe that disability is just a social construct. It’s something we make up to make it easier to sort and categorize people, and we could organize our world to make it accessible to every single human being if we chose to do so. It’s within our power to make a difference, and these documents, the international documents, the Declaration of Human Rights, the Convention on Civil Political Rights, all of these are incremental steps toward realizing that we are in fact one human race, whether our cultures differ, our languages differ, our countries of origin differ, we are really one, and so we need to see people as people first and we need to do whatever it takes to support them to fully participate in society.

  Access to health care is hugely important. Our status of our health enables us to be full participants in daily life. And when our health is impaired in one way or another, we as a society can remove those barriers, we can make physical environments accessible to people, we can use technology to help people to communicate. There is much we can do to give everybody equal opportunity to participate in society and to have full rights and membership.

  With all that being said, all during my life, I’ve tried one way or another to make that happen, and for the last 10 years or so I’ve been working with Mental Disability Rights International, which is an organization dedicated to the human rights of all people, in particular to realizing the rights of people who have been labelled with mental illness or intellectual disability. The organization was founded by Eric Rosenthal in 1993, and I got to know him early on and have served on his board since. He sends his regards. He was actually supposed to be here, but he’s getting ready to release a report we’ve been working on, on conditions in Serbia, and so was unable to attend. That’s why I am here instead.

  The importance of this Convention, and the optional protocol, is that it is an articulation of the human rights as they apply to people with disabilities. And, this is another job for you, to advocate with your states, not only to ratify the convention, but also the optional protocol, because it will give a complaint mechanism. There are two ways that that mechanism can come into being. There’ll be a committee that can hear complaints, and that committee can also initiate and inquire into conditions in a member state, or a party to the treaty. A right without a remedy is no right at all. You have to have some way to enforce rights. They can be monitored by the powers that be, they can make recommendations, as Helena was showing us, in the four year process for monitoring and enforcement, and recommending steps for implementation. But you really need to have some right in law or policy, and some means of enforcement, to really move the system forward.

  And this is certainly my experience in my own country, that while as parents we organized, we advocated, we ultimately got laws in place, it wasn’t until we engaged lawyers to help us enforce the laws that we actually saw a transformation of our service system. And that’s what Mental Disability Rights International is doing, on an international basis. Eric wanted to see these kinds of enforcement mechanisms that we were enjoying in the United States disseminated throughout the whole world, because people were experiencing the same kind of isolation, incarceration in institutions, and absence of programmes, absence of health care, absence of status. In many cases, even today, we have found children who have no identity papers, in institutions that are not on the record of the Ministry of Health. So if the institution does not exist, and the children within do not exist, how can anyone do anything about them unless you stumble across them accidentally, as we did?

  The framework that supports Mental Disability Rights International’s investigations and advocacy is the Universal Declaration of Human Rights, which is regarded today as international common law. The International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social, and Cultural Rights, that’s the framework. We are hoping that with the ratification and putting the Convention on the Rights of Persons with Disabilities in force, that this will give us yet another tool which is really powerful in terms of its articulation of rights.

  To transform a system, and this is the methodology MDRI uses, you have to have knowledge of the framework. That’s that international law that I just mentioned, plus all the other documents that I didn’t articulate here, but in our reports you can see them referenced in the footnotes. You have to have the facts of the current situation. That means you have to go and look and see what really is happening to whom, by whom, what the resources are. You cannot make a change just on anecdotes or on exaggeration. People will say “That’s such a terrible situation”. No. You must describe facts, you must be precise. Facts are powerful. You don’t need adjectives to draw emphasis to them, because the facts when people’s rights are violated are significant enough in themselves.

  You have to have a vision of a preferred future. It doesn’t help to say how terrible something is, what do you want instead? What is your vision? What is your plan? So, that has to be in place. There needs to be a will to act. And think now of the powers that you all have given to you in this Convention with the involvement of civil society. People working together can make a huge difference. There needs to be an investment of financial and human resources and capital, both money and people, and people and time. Sometimes you don’t need so much money as you do person-power. Organizers coming together with a vision and a plan. And you have to have hope, and you have to have courage, because it’s not easy work. When you challenge the establishment, it often responds in a punitive way. Establishments, governments, whatever kind of establishments don’t like to be told that they should be doing business a different way.

  So, that’s why the facts are powerful, because it’s not personal, it’s about facts. And so, find the facts, document the findings, demonstrate how those observed conditions violate the national law, human rights, and then you report those findings to state officials. The real report will contain within it recommendations for change, what would be instead of institutions where people are given electric shock without anaesthesia, and the other patients are told to hold down the patient while this happens. What would you have instead? You would have access to treatment, to health care, that’s appropriate, that’s acceptable, that’s accessible, that’s adequate, that is of high quality.

  We at Mental Disability Rights International documented this kind of electro-convulsive shock treatment in Turkey without anaesthesia. As a consequence, the government has banned that practice, and an organization of individuals with psychiatric disabilities has been formed, and it is now monitoring the psychiatric hospitals in Turkey to ensure that that practice is not reinstated. People can make a huge difference, and if you notice I indicated it’s the people who use the service who are the most powerful monitors of a service.

  Helena showed her diagram with the individual in the centre. The individual is in the centre, not alone, not unsupported by the community and all stakeholders, but the individual must be at the centre. All people are created equal in dignity and rights, and that means all people. Not just some.

  I talked a little bit about transforming systems of care. I think that I will save the rest and let you ask me questions about the different countries. We have worked in 22 different countries. Most of the ones I’ve worked in have been in Eastern Europe, although I’ve done training of families in Peru, to organize and advocate for changes in their system. The biggest thing that I can say is that you are powerful, you have wonderful tools to work with, the new Convention is important, Article 25 is at the heart of it. If you don’t have health, what have you? So let’s go forward with hope and courage, and a plan.

  Thank you.

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• Jocelin Lecomte

  Thank you very much, Elizabeth.

  Our next presenter will be presenting an academic researcher perspective. We have the pleasure to have with us today Dr. Eric Emerson, who is Professor of Disability and Health Research at the Institute for Health Research at Lancaster University, and Visiting Professor at the Faculty of Health Sciences at the University of Sydney. Dr. Emerson has been a member of the English Department of Health Task Force, monitoring policies and practices for persons with intellectual disabilities. He was a member of the external working group for the development of a national service framework for children, young people and maternity services.

  He has written extensively, several books and more than 140 articles in academic and professional journals on issues related to emotional and behavioural needs of persons with intellectual disabilities, and costs and benefits of social care services. Most of his work has addressed the health and social inequities faced by children and adults with intellectual disabilities.

  So, Dr. Emerson, you have the floor.

An Academic Perspective

• Eric Emerson

  Thank you to the organizers, for the opportunity to talk to you. And thank you to Helena, for such a clear overview of both the case for paying attention to the right to health for people with intellectual disability, and the instruments and processes that might help us along the way.

  Even though I’m an academic, I’m not going to talk for very long, so you can relax. What I really want to do is just to pick up briefly on some issues around the types of activities, at both the international and national level, that may be important in helping us fulfil the right to health of people with intellectual disabilities.

  I want you to think back to one of the slides that Helena showed. The title was “Right to Health”, and on the left hand side, there was a list of the underlying determinants of health, and on the right hand side, there was a list of activities around health care provision. The point I want to make is actually fairly simple. And it’s this. In the intellectual disability world, we have focused almost exclusively on the right hand side of that slide. If we look at emerging policy and practice, if we look at the research which has been undertaken into the health of people with disabilities, we have obsessively focused on addressing the right to health care and the provision of effective health care services.

  There are, of course, good reasons for focusing upon the right to good health care services for people with intellectual disability. To do so can make a profound difference to people’s life expectancy. I think it’s quite clear that the marked changes in the life expectancies with Down syndrome, which we have witnessed in the world’s rich countries in the 20th century, was primarily driven by access to better health care for infants with Down syndrome.

  But I think we have a problem, because if we contrast policy and practice in this area, particularly in the world’s rich countries, with knowledge about the determinants of health, then we have a rather uneasy discrepancy between what we know about the key determinants of health and emerging policy and practice. Because if you take that broad overview, then I think there’s an inescapable conclusion. That focusing on the health care provision will not be addressing the key determinants of the poor health of people with intellectual disabilities.

  That’s a broad statement to make, and what evidence? The question to be asked is what evidence do we have for this? Well, actually we have centuries of evidence. The key determinants of health in a population are not access to health care provision and health care services, but are the conditions under which people live their lives. Between the mid 19th century and the mid 20th century, we saw massive increases in the life expectancies of people in the world’s rich countries. Changes not driven by better health care, but by better water, better sanitation, better labour conditions.

  We’re currently living in a world in which health is remarkably inequitably distributed. But it’s not distributed simply on the basis of investment in health care. If it were that simple, then answer me this question. Why, according to the 2006 World Development Report, is life expectancy at birth in the United States lower than the life expectancy at birth in Chile? Chile has a GDP per capita one quarter of the US, and spends less than 50% proportionally, of its GDP per capita, on health, yet people live longer.

  There are no easy relationships between health care, investment in health care, and provision of health services, and health of populations. It’s that growing understanding of the important determinants of health, and inequalities in health, which have, of course, driven the World Health Organization’s establishment of the Commission on the Social Determinants of Health, which we'll be reporting next year.

  What does this have to do with people with intellectual disabilities? Well, it has quite a lot to do with people with intellectual disabilities, because people with intellectual disabilities are much more likely to be exposed to the social and living conditions which do not promote good health. Poverty is probably worldwide the leading cause of intellectual disability. And intellectual disability, because of the cost of supporting and the impact it might have on unsupported families, is a major cause of poverty. People with intellectual disabilities are more likely to be exposed to low social status, poverty, and discrimination. The causes of the causes of unequal health, worldwide.

  But maybe, just maybe, people with intellectual disabilities are immune from these things. You know, because of their intellectual disability they're not susceptible to the impact that poverty and deprivation may have upon their health. That point has been made, rather forcefully, often by my medical colleagues. There is no evidence to support that assertion. The evidence which we do have, which we are currently gathering in Australia and the UK, suggests the opposite. That, to the extent that there’s a difference in the impact of these social determinants of health, (poverty, low social status), it has a greater impact for people with intellectual disability than for other children.

  So, I think we have a problem. I think we have two problems, actually. I think we have a problem in that the intellectual disability community, both the research community and the policy and practice community, have focused almost exclusively on one area, or one set of actions to promote health for people with intellectual disabilities. And there's been scant regard to the underlying determinants of health. The evidence suggests that paying regard to the underlying determinants of health is probably, in the long run, significantly more important than focusing upon access to health care.

  So, within the intellectual disability world, there's a disregard for our concerns for the social determinants of health. We've got another problem, though, because within the social determinants of health world, there is a disregard for disability. The interim statement on the Commission on the Social Determinants of Health makes no mention at all of disability anywhere in its document. It's a disregard apparently within the work of the Commission, and its a disregard within the broader academic community which feeds into this debate. So we have a problem here, we have a real problem.

  What I'd like to end with is a plea to two constituencies. One plea is to everybody here, that over the next few days as we begin to think about what we should be doing both internationally, at the national level, within the organizations we work for, in order to promote the right to health of people with intellectual disabilities, we think more broadly.

  The second plea is more specific, because as we were informed this morning, we have the heavyweights from the World Health Organization with us over the next few days. I guess it's a plea to the World Health Organization to ensure that the excellent work currently being done in promoting this broader view of health, in increasing the focus on the social determinants of health, embraces disability within its work.

  Thank you.

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• Jocelin Lecomte

  Thank you very much, Eric.

  So basically, one of the objectives of this conference was to allow you the participants to engage with presenters, and also to network. Well, I think you're taking care of the networking part yourself, but now it's time to engage.

  We have set up microphones on the floor, if you have questions or comments on the keynote address or on the presentations that were done this morning. I would ask only two things. First of all, that you identify yourself, your name and where you come from, and also that you be a little bit brief to allow a response from the panel. If you want to indicate to which person you're addressing the question, so much the better. Thank you.

Questions/Answers

• Penny Robertson

  I'll start since I'm closest to the microphone. I'm Penny Robertson, and I'm from Down Syndrome International, and I'm the Principal of the Australian International Schools of Indonesia. We're the only international school which accepts students with special needs. My question is to Helena. Firstly, I did attend the UN to witness the signing of the Human Rights Declaration on People with Intellectual Disabilities. It was wonderful to actually witness that , however, to find yet that we don't have the 20 countries signed up for ratification of that treaty is somewhat disconcerting, given what a highlight event it was.

  Firstly, could you just tell me where're we're at, in terms of the number of countries that have ratified the treaty, and how we go about getting the 20. Secondly, living in Indonesia, listening to the comments about the right to health, it's something that comes up very frequently, where we actually have stories in the newspaper about children who have to leave hospitals because their parents can't pay for their treatment. Yes, we all agree with the right to health and treatment, but who is to pay?

  Thanks.

• Simon Walker

  It's true that the Convention has not yet come into force. I don't see that as a negative thing at all. To explain the process of how a Convention comes into force, very briefly, it does change from country to country, but generally, once a convention is adopted, then three months later or so, it's open for signature, and countries sign it. As I said, we have 118 countries that have signed the Convention, and 67 countries that have signed the optional Protocol. The idea is that that shows a good will on behalf of the government, first to respect the rights in the Convention, and also to start a national process to change laws, to change policies, to set a programme of change in place, for the full realization of the Treaty. And that leads to the next step, which is ratification, and once a country ratifies a convention, then it is legally bound by that convention.

  So, at the moment, as I said, we have 118 countries who have signed the Convention, we have 7 countries that have ratified the Convention. For the Convention to come into force, we need 20 ratifications. I certainly see the high level of signatures as a positive thing in the Convention. There is certainly good will on the part of many governments to take the Convention on board. And I think the relatively slow ratification process is also positive, because I think that that means that countries hopefully are taking the ratification process seriously.

  Remember the ratification is a moment, it's an event of reform, at least of law reform. Obviously, implementation comes after law reform. Once it's ratified, that momentum is lost, the event has passed. So, if a country ratifies too quickly, then that event of law reform is lost. Immediate ratification can also be a lost opportunity, so it's important to remember that.

  The other thing is that the Convention was open since March, we're now in November, that's nine months. That's actually a very short space of time for a Convention to come into force. The Convention on the Rights of the Child, which as Helena said, has almost universal ratification, took 10 months to come into force. So, we're not at the 10 month mark yet. The International Day of Disabled Persons is the 3rd of December, that's possibly another time where we'll have more ratifications. So, I don't think it will happen this year, I think it will probably happen early next year. But I don't see this as a lack of interest on behalf of states. I think generally so far the process is quite positive.

• Helena Nygren-Krug

  There is always the sense that, when we talk about the right to health, this is expensive, this requires a lot of resources, and it raises the issue of who is to pay. I tried in my presentation to look across the range of rights. There is a strong recognition, for example, that everyone has the right to a fair trial, and it would be outrageous if somebody was picked off the street and accused of a crime, and they didn't have a chance to defend themselves. Practically everyone accepts that as a right. And in fact, if you think about how expensive that right to fair trial is to a government, you need to have trained judges and lawyers, to have defence for the indigent, you need to have a rule of law, you need to have the whole apparatus of the justice system. That's hugely expensive, and we haven't done a study on it, but I think the right to health is far cheaper than the right to a fair trial.

  But there is a sense that the right to health is an economic and social right, and it requires a lot of resources. Yes, there are resources that are required, but I think that Dr. Emerson also made the point that there are a lot of steps that need to be taken around underlying determinants of health, that are perhaps not as a expensive as secondary, or tertiary health care. Safe and potable water is one of the most cost effective interventions to improve the health of poor people, nutrition, and so on.

  But then things like tackling inequalities and non-discrimination require leadership, require a government that is going to raise awareness, and exercise leadership. This may not cost so much, but it may require leadership. Breaking down stigma, taboo, and advocating for inclusion in a society. These may be things that are not so expensive, but can do a lot for health.

  Also, when you talk about the right to health, there is something called a core content to the right to health. When you look at the general comment, it gives some basic markers. For example, when a government is moving forward, there are some basic things which should be there, like primary health-care, sanitation and water. And, as I tried to demonstrate, it is about taking steps and moving forward progressively. So in terms of performance, if there are situations where people are paying out of pocket for health care, that is not appropriate in terms of the right to health, because we have evidence to show that that significantly impacts poor people's access to health, and it very much reinforces inequalities.

  So, when we look at performance under the right to health, we're looking at structural indicators. One of the indicators being proposed now for the treaty monitoring bodies is comparing, for example, expenditure on military vs. the health sector. That's proposed as one structural indicator to monitor government commitment. So that may say something in terms of priorities. And then in terms of systems, WHO is working around that issue, in terms of how can you enforce the principle of solidarity for health care expenditure, ensure that health insurance is in place. It's something that we're working on, even with low income countries, to see how that can function.

  I hope that I made the point that there are things that can be done to move forward the right to health, that don't require significant resources. There are issues that can be done just when there is strong leadership and awareness in a society, and that it is something that has to be progressively realized. It can't happen overnight. Thank you.

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• Jocelin Lecomte

  Thank you, Helena. I think that Helena touched upon a very important point. That the right to health does not mean the creation of a parallel, special health system for persons with disabilities which would be more endowed than the regular population. This is to be looked upon country by country, and not to think of it as asking for more for people with disabilities than for a regular citizen. It's more linked to the country that we're looking at. Are there any other comments or questions?

• Elizabeth Bauer

  I just wanted to add that my experience, in my country, was that medical care professionals had not had exposure to people with disability characteristics during their pre-service training. In fact, paediatricians, during the 1960's, only had two hours of exposure to the concept of disability. Of course, if you slept through that class, you didn't have any exposure to the concept of disability. So when they became doctors, nurses, whatever, this was a field that was foreign to them, and they really couldn't advise me as a parent on what to do for my own children. I had a lot of opinions about that, until I understood that they had absolutely no pre-service training. And we've advocated for them to have more. I think it's up to eight hours now, it's not a lot. But these are things that really don't cost more money. If they would have internships or exposure, then they would have more understanding, more willingness to serve.

• Pat Lennon

  Pat Lennon, L'Arche International from Lethbridge Alberta, Canada. I have a question to the panel as a whole. The right to health care when one becomes a senior, and when one becomes a senior, the right to be able to die with dignity. I'd be interested in your comments.

• Jocelin Lecomte

  You're talking about people with intellectual disabilities, when they become seniors? And the right to die, for persons with intellectual disabilities?

• Pat Lennon

  Given that people with intellectual disabilities often become seniors before the chronological age of 65, the right to be able to receive the often quite intense care that's required without always the necessary economic support to do that, except from family support or out-of-pocket support to do that. Often then, as the person becomes ill, and particularly people who have been unable to vocalize their own requests, their own wishes, how can they die with dignity? Have you given consideration to a discussion, or including that in the right to die with dignity?

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• Elizabeth Bauer

  I'll take a crack at it, from my experience as Executive Director of the Michigan Protection and Advocacy Service which is the federally mandated rights protection system in Michigan. We had a number of cases. Basically, our philosophy was that if we could not get informed consent, if the individual with the disability wasn't able to make their wishes clear, then we didn't do irreversible things to people without their consent. That guided our work in terms of preventing sterilization, preventing withdrawal of food and water, and things like that.

  Now, if the person said to us, I don't want extraordinary treatment, I want hospice care, and we did have clients that wanted that, we had to advocate for them to get hospice care because it wasn't forthcoming because of the prejudices. But we really tried to give the individual information in ways that they could understand it, and wait for their direction.

• Jocelin Lecomte

  I think you're touching a very important question regarding sustained decision making and of course legal capacity in consent, but also it's something that transcends intellectual disability, because it touches everybody, but at the same time the specific characteristics of a person with intellectual disability makes it much more acute. I think it's a very good point.

• Josephine Bakhita

  My name is Mama Josephine Bakhita from Tanzania. I am the only one from Tanzania at this conference. Mine is not a question, it is an appreciation of what has been said here. In my country, there is an awareness of the disabled, but this issue of mental or intellectual disabilities is not a priority. Therefore, for the rights which have been mentioned here, especially the right to education, and the right to health services, these rights are not implemented.

  For example, there is a family with five disabled children, and they are not known to their local government, or to their regional hospital, or to the health sector. The disabilities of these five children are not recognized, and so I appreciate what has been said, and what is being practiced in other countries.

• Question

  I'm from Sri Lanka. I have a question in the South-Asian context of the rights-based approach. In India, it's developing extremely quickly, so the people with disabilities themselves are really starting to lead the movement. In Sri Lanka, however, we're right at the beginning of this movement.

  What I'm concerned about is, we're talking about people with intellectual disabilities. Especially in India, the movement is being led, 99%, by physically disabled people. I'm really concerned, because even people in India who are leading the movement say, “Actually, we don't know how to include people with intellectual disabilities in the movement”. So how can we ensure that people with intellectual disabilities are really at the forefront and not marginalized even within disabilities?

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• Jayanthi Narayan

  I'm Jayanthi Narayan. I'm from India. I'm a special educator. I've been working for the Institute for the Mentally Handicapped. Now, the point made about the movement in India is partly right, because persons with physical disabilities are vocal, whereas our youngsters are not in a position to say what they want. But what is happening in India, really strong, is with the support from the National Institute for the Mentally Handicapped, where I was working. Later it took off on its own.

  All the parent organizations of persons with intellectual disabilities have formed a federation at the national level. So we have a federation of parent organizations in India with these parent organizations from all over the country as members into it. The parent organizations get registered, as a registered society, so that they become an authentic body, then they in turn register into the federation. So this federation is quite strong in lobbying and getting things done through the government. Where our youngsters are capable of voicing for themselves, because of slightly higher levels of intellectual functioning, they themselves are members.

  We also have conferences of youngsters with intellectual disabilities who are employed and earning, and every year there is a platform for them to come and be self-advocacates. It's a beautiful thing to see, the self-esteem that they have. So filling in the gaps is probably being done by the other disabilities. But the persons in focus, the groups with intellectual disabilities and the parents groups are definitely very active, and those who are capable of sharing what they have in mind, they are definitely very vocal. They also have a platform every year through NIMH too, and come from all over the country, hundreds of persons, like us, with the name tags and everything. You should see the pride on their faces.

  Helena talked about the persons with intellectual disabilities claiming their rights, and caregivers fulfilling obligations. When it comes to organ donations, this is an experience that we had. There was a youngster with intellectual disability, and his parents wanted to have the youngster's kidney to be donated to an elder brother, who was in need. The boy is ready but the surgeon is not willing to touch him because he is intellectually disabled.

  So when medical team members of our Institute asked the boy, “Are you willing to give?”, he said “Yes”. “What are you going to give?” “Kidney.” “Where is it?” “I don't know.” “How are you going to give it?” “I don't know.” When the doctors explained that he would have to go through a surgery, and all the steps involved, the young man refused.

  So, the point I am trying to make is that we should have a really strong manner in which informed consent is taken, and they are not exploited. And for those youngsters who are not in a position to understand because of their limited intellectual disabilities, who is the decision-maker? Even if it comes to his own health reasons for which invasive surgery may be a necessity. Who could be a decision-maker? This is a point that is bothering me. I'm sorry I used this forum when I came here to respond to something else, but I thought that this should also go across. Thank you.

• Question

  I am a clinical services manager for a deaf service in the UK. I am trying to find out what is actually being done in relation to intellectual disabilities, and deaf people, whether this is in Africa or other parts of the world. If the panel has any ideas or any work that is currently being carried out, with intellectual disabilities and deaf people.

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• Answer

  We have a Regional Advisor from the African region here, that's probably where the best information can be found on this.

• Jocelin Lecomte

  Agreed. I don't think there are any more comments. I 'd just like to brush across the panel here for some final comments on what you heard, questions that were asked, and some of the points that were not addressed. Very quickly, but to allow you to reflect and comment. So let's start maybe with Eric?

Final comments from the panel

• Eric Emerson

  I think that it's in response to the comment from the lady from Sri Lanka, emphasizing the importance of capacity building in this area, to ensure that this is not just a top-down exercise in promoting rights, but that we do invest in capacity building, to help people with intellectual disabilities claim their rights. And I do think we're in a much stronger position than we were a decade ago on how to do that.

  Through the organizations like Inclusion International, like a number of national examples, we have some pretty good idea now about what we need to do in order to enable people with intellectual disabilities to play an active role and start claiming their rights. And I think that's been a really exciting development.

• Elizabeth Bauer

  Just a couple of things. One thing that I didn't mention before that I wanted to is the importance of independent advocates and the nongovernmental organizations in advocating change, because while a nongovernmental organization is accountable to the society at large, they are free and independent to call governmental bodies and intergovernmental organizations to account. And so a strong nongovernmental sector is very very important. I encourage people to build that.

  The second point, I encourage you to build it in the most inclusive way possible. My experience in this field is that the early advocates get the biggest piece of pie. In the United States, the early advocates were the parents of the children with intellectual disabilities, and to this day the most funding goes to the smallest number of people because they organized early and created laws that support the human service system.

  People with mental illnesses, who are a much greater population, have been excluded up until recently. Even when we passed our Americans with Disabilities Act, the physical disability community and the intellectual disability community were more than willing to exclude the people with psychiatric labels, because they thought the law would get passed faster. It was very difficult to keep it inclusive of all disability characteristics and a generic definition which we did achieve. But I think it's really important to try to be as inclusive as possible from the very beginning, because once a law is in place, it's very hard to amend.

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• Simon Walker

  On the question from Sri Lanka, about consolidating and strengthening rights-based approaches, I think that the answer that I was going to give has already been given. Basically, don't forget international networks, although bottom-up is very important. There are also international NGO's who are here, even at this meeting and on this panel, who have experience and they can also provide experience from other places, so don't forget that element as well.

  And just on the example that was given on supported decision-making, and the kidney transplant, this is actually a very good example of supported decision-making. The presumption was in favour of the boy, and the doctors were sensitive enough to realize that the presumption should be in favour of the boy, and not necessarily what is said by others who claim to be speaking on behalf of the boy.

  It's also what I was referring to, the importance of gathering more experience. In some countries, support network groups are in existence, and this is one possibility. In some countries, there are legally appointed support networks, or a support person. There could be other models as well, but it's important to start building up these networks, and maintaining the fact that the presumption is always in favour of the individual and their decision.

• Helena Nygren-Krug

  Firstly, I would like to say thank you again. I think it's been a very rich discussion. I'm thinking more about WHO's role in disability rights, and I feel that there is so much experience and good practices when it comes to our link to the Committee on the Convention on the Rights of Persons with Disabilities, our role could certainly be to disseminate those good practices, and to amplify the voice of civil society, and to provide some leadership and a more convening role, I would hope. And so I'm really looking forward to the Committee being established and for WHO to play a strong role in the Committee on the Rights of Persons with Intellectual Disabilities. Thank you so much.

• Jocelin Lecomte

  Well, this concludes our Plenary Session of this morning. I think it sets the tone for the conference, and I want to thank Helena, Simon, Elizabeth, and Eric for taking part in this session. I also want to thank the participants, because this is your conference, and we want you to engage with each other and with the panellists.

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