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Policies & Resources

Plenary session

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Keynote Speech

Chairperson

  • Céline Mercier, Director, Research and Education, Gabrielle-Major, Lisette-Dupras and West Montreal Readaptation Centres for Persons with Intellectual Disabilities, and Professor, University of Montreal (Canada)

Introduction

  • Céline Mercier

    I think it's quite appropriate to start this second day about Resources with a speech by Diane Richler, because she is a wonderful resource in our field. I am really glad that she agreed to be with us. As you know, Diane is the President of Inclusion International. In November 2006, Inclusion International published a report, entitled Hear Our Voices, that is about persons with intellectual disabilities, their families, poverty and exclusion. The report is on the Inclusion International website, and also on the conference website, if you want to access it.

    Diane has served as a Director of the Roeher Institute, Executive Vice-President for the Canadian Associate for Community Living, Policy Advisor to the Canadian Minister of Human Resources Development, and as a consultant to the World Bank, Inter-American Development Bank, UNESCO, Organisation for Economic Co-operation and Development (OECD). She has also served as a member of the UN panel of experts on Human Rights. In 2004, she was awarded the Order of Canada, in recognition of her extraordinary contribution to advancing the human rights and inclusion of persons with intellectual disabilities in Canada.

    It's always a privilege to listen to Diane, because she is always quite stimulating, and she always opens new horizons. And today, she is going to talk with us about her visions of the future. It's really an honour to have you share that with us this morning.

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Policies and Resources: A World Perspective

  • Diane Richler

    Merci beaucoup. Good morning, everybody. It really is a pleasure to be here today. It was not a difficult decision to decide to accept this invitation, and I really want to thank the Government of Thailand and the World Health Organization, and especially our friends in Montreal, for the work that they've done in putting the issue of intellectual disability onto the World Health Organization's agenda. That's really the reason I'm here, in appreciation for all the work that has been done.

    I also want to say thank you to the organizers for being so open to involving Inclusion International in the planning of this meeting, for ensuring that self advocates and families from every other region of the world have been able to be here, and also for your sensitivity in the title for the conference.

    The “slash” was very important to us, and I checked with Céline before mentioning it this morning, but we had been invited to co-sponsor this event, and the invitation was taken very seriously by our council, because we do regard any invitation from the World Health Organization as being a real reaching out to civil society, and its not often we get those kinds of invitations. But we had to say no, because of the words after the “slash”. Our organization, which is basically an organization of families, and increasingly of people who themselves have lived with many labels, has been fighting very hard to get away from labels. And so we're very happy that now there are words before the slash, and we hope that when we come to the next conference, we’ll be here as co-sponsors, and the words after the “slash” won't be here.

    Céline has already given a plug to the study that we completed last year, and I am going to talk about that this morning. I'm also going to say a few words about how it compares to the Atlas-ID that was released last night. And then I'm going to talk a little bit about a common way for those of us involved in putting together our document, and those involved in the Atlas, how we can work together.

    The title of my talk this morning is “Policies and Resources: A World Perspective”, and I think the word perspective is important, because it recognizes that there's more than one way to look at any issue. And in thinking about different perspectives, I came across a couple of quotes. One from Frederick Nietzsche, who said about sacrifice and the offering of sacrifices: “Sacrificial animals think quite differently from those who look on, but they have never been allowed to have their say”. A similar quote from George Bernard Shaw: “When a man wants to murder a tiger, it's called sport. When the tiger wants to murder him, it's called ferocity”.

    And then I found a story that I thought was very appropriate, because it comes from a Buddhist text, apparently from the second century before the Common Era, and it's the legend of the blind man and the elephant. Do some of you know that story? Yes, the people who live in this region, and people who are familiar with Buddhist text.

    It's about a community of blind people who found out that an elephant had been brought to a neighbouring village. They heard about it, but they wanted to know more about it. So they sent three men to go and learn more about the elephant, and to come back and tell them about it. So these three blind men went to the village, and they all got up close to the elephant. One person touched the leg, another person touched the truck, and another person touched the ear. They spent some time feeling this elephant, and then they went back to their village and they said “We now understand what an elephant is”.

    And the first man said “An elephant is like a pillar, except that it's somewhat rough and somewhat soft”. And the second man, who had touched the tusk, said “No, no, no. An elephant is very smooth and hard, like a pole”. And the third man, who had touched the ear, said “Well, it is somewhat soft and somewhat hard, but it is very big and soft, like a piece of leather”. To some extent, each one was right, but they had each just seen a part of the elephant.

    And to some extent, I think, comparing the work that we did in putting together Hear Our Voices, and the work that was done on the Atlas, these were two different views of the same elephant, and we can only understand the whole elephant if we put the two pieces together.

    We started our process of examining the link between poverty and disability because, like the people involved in the Atlas, we were very concerned that issues facing people with an intellectual disability and their families had been invisible. Over the last number of years, there have been a number of major changes, both internationally and nationally, in laws that supposedly have given more rights and more benefits to people with disabilities, and yet what we saw on the ground was that very little was changing in the lives of people with intellectual disabilities. And when we went knocking on the doors of many multilateral institutions like the World Bank and the Regional Development Bank, what we heard was “We've got other priorities. Our priorities are education. Our priorities are poverty. Our priorities are gender issues”. And we said but those are our priorities. Our priorities are education.Our priorities are poverty. Our priorities are gender issues. But they didn't understand.

    And so we decided that we would develop a strategic plan, based on the Millennium Development Goals. Now, the Millennium Development Goals are a set of targets that were established by the UN in 2000 that set some very measurable targets for reducing poverty. And so we decided that we needed to use the language that those people who said they were trying to address our issues, were using in order to convince them. And so we adopted a strategic plan based on the Millennium Development Goals, and then we conducted a three year study. It involved 80 countries, and we involved families of people with disabilities, many of whom are in the room right now, doing research on a regional basis, then we brought people together on a regional basis, and they each developed a report for their region, and then we compiled all of those regional reports into a global report. And I'll talk a little bit about our goals and what we found.

    The first goal is to eradicate extreme poverty for people with disabilities in their families, so that by 2015, people with intellectual disabilities in their families will live free of poverty and discrimination. Some facts. Estimates that as many as one in five of the poorest people in the world have a disability. That 26 million people with an intellectual disability, and their families, live on less than one dollar a day. That's almost the population of the country that I live in, Canada. For others, individual and household incomes are well below the poverty line.

    At the national level, we saw some data that in Brazil, disabled workers earned 45% less than non-disabled workers. In Moldova, one third of the households that have a child with disabilities fall into the lowest income quintile. In Romania, households with children with disabilities have 65% per capita income of other families. In Hungary, household income with a child with a disability is less than 80% of average income , the same stories from Estonia, from the Middle-East, from El Salvador. These kept being repeated over and over again. Similarly, in Canada we found that over 70% of working age adults with intellectual disabilities are either unemployed, or not in the labour force. In Europe, 78% of people with severe disabilities are outside the labour force, compared to 27% without disabilities.

    In this story, what was important was that the cost of disability was being born by the individuals and by families. Even in countries with a lot of social programmes, there were a lot of un-reimbursed costs of care giving, whether it was health care, medication, technical aids and devices. And the largest un-reimbursed cost is the care-giving provided by families. In Mexico, we found that 80% of the care to people with intellectual disabilities in the country was being offered by families. And this support by families itself has a cost. Ill health, lost opportunity to earn income on the part of the family, and increased family debt. In fact, one study in the UK turned this into an equation, showing that the extra cost of disability, plus the inability to work, led to poverty and debt.

    There was also the issue of discrimination. I'd like to read you a quote from our Zambia country report. This describes the people who were going door to door, gathering information. “Progress was slow, because the disabled persons were being searched for. Facilitators went door to door, asking for directions. Makalulu has a lot of illiterate people who are very superstitious. In most cases, the facilitators were suspected to be Satanists, enlisting future victims or intended victims. So in many occasions, the facilitators were rejected or threatened with violence if they visited again. The facilitators were informed that some people had been stoned when conducting similar activities. Some did not want to respond because they claimed that many people had conducted similar activities before, without any tangible results. They felt that they were being used and cheated. Facilitators failed to capture some disabled persons, because they were not found at their respective homes most of the times they were visited.” And that kind of story was repeated over and over again.

    Among the causes of poverty for people with disabilities in their families are not just the kinds of causes related to loss of income, or lack of education, or the fact that parents sometimes can't work, but there's also the issue of families who have a member with a disability not having the time to invest in building the social networks that they need to really be a part of the community. And this is one of the major causes for the weakness of many of our associations around the world. So often, families are struggling so much simply to manage the day to day needs of their sons and daughters, or other family members that it's impossible for them to invest the time in building up associations and lobbying for change.

    Regarding inclusive education, our goal is that by 2015, all children with intellectual disabilities will receive good quality, inclusive education, with appropriate supports to ensure that each child reaches their highest potential. Now, we were a bit surprised when we started writing up our final report, to realize how little information we had on education. Finally it dawned on us why. It's because our children are not in schools. In fact, fewer than 5% of children in most countries are now completing primary education. The exclusion starts early, and often the exclusion is mandated in the sense that the Ministry of Education is not even responsible for educating children with intellectual disabilities. This happens in countries in Africa, where the Minister of Social Affairs may be responsible for the education of children with disabilities. It's happening now in Romania, for children who are leaving institutions, and so there's no hope for those children to get to school.

    The issue of gender equality is extremely critical. Labour market participation rates. Women with disabilities are working much less than men. Mothers or sisters are often responsible for care. Women are often blamed for having a child with a disability, and what we found is, very often abandoned by their husbands. And there's also a huge problem of vulnerability and sexual abuse, which has been found in research to be 40 to 70% of women with intellectual disabilities have been sexually abused. Forty to seventy percent.

    The issue of child mortality. Even in countries where the child mortality rate is improving, the numbers of children with disabilities dying is staying at a very high rate. Sometimes four times as high.

    The rights of children and families. To us that means that the rights of children with disabilities will be respected, that mothers will receive adequate pre- and postnatal health care, and that families will get the help they need.

    The issue of combating Human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). We met in Africa a couple of years ago, and realized the impact that AIDS is having on families in the region and on communities, and yet how much people with disabilities are being left out of the process. Often, education programmes about HIV and AIDS are not targeted at people who have a disability, and because there's little data on the prevalence rates of HIV and AIDS among people with a disability, again it's an invisible problem and it is not being looked at.

    So, there are a number of issues. The prevalence rate, the fact that existing strategies don't touch people. In Burkina Faso, for example, a lot of humour was being used in ads on the radio to teach people about AIDS prevention, and the kind of humour that was being used was not accessible to most people with an intellectual disability, so they were being just completely missed.

    Then there's the impact of multiple discrimination for people with an intellectual disability living with HIV and AIDS, and also the huge problem of children with disabilities orphaned by AIDS when other family members weren't able to care for the child.

    The issue of environmental sustainability. The outcome of extreme poverty faced by people with disabilities is often compounded by unsanitary living conditions, such as living on the streets, or living in some of the poorest neighbourhoods worldwide. The OECD is doing some research now on children with disabilities, both in and out of schools, and they've just completed a test in Ethiopia, in Addis Ababa and they found out that the single best predictor of intellectual disability in Addis Ababa was the quality of drinking water, and yet usually that's not an issue that's thought of in terms of intellectual disability.

    And finally, related to the last Millennium Development Goal, which is to develop a global partnership for development, increasingly international donor agencies are developing policies on disability. The Norwegians have done it with North American Aerospace Defense Command (NORAD) , the United States has a disability policy in United States Agency for International Development (USAID). The Swedish SIDA have a policy. But overall development initiatives do not take into account the issues facing people with an intellectual disability.

    So overall, what have we learned? The link between poverty and disability is social exclusion. That poverty for people with intellectual disabilities and their families is not only about money, it's about being excluded. That limited access to education, health care and vocational training, plus an undervaluing of abilities, that's what Paul talked about yesterday, means fewer opportunities to work and be part of the community. There are increased medical and disability-related costs that impact on families and individuals, and this is true in high income countries as well as low income countries. Even in the highest income countries, having a family member with a disability has a financial impact on the family. Responsibility of care-giving falls disproportionately on women, and the day to day needs of getting by, results in fewer and fewer informal supports.

    Now, there are some regional trends that become evident, and I'm just going to touch on some of them briefly. In Africa, the cultural and social conception of disability was extremely important, and the fact that disability was not being considered in poverty reduction strategies, coupled with the weakness of civil society. In Europe, where there's been such a strong emphasis on social inclusion, people with disabilities have not been included in the social inclusion agenda. It seems somewhat ironic that there's a whole agenda on social inclusion, but it continues to leave out the most marginalized. There's also a question of the role that the so-called welfare state has played in terms of creating a reliance on services, which have sometimes worked to keep people out of participating in their communities. And in fact, has kept the people within those services poor, in terms of their limited ability to expand their lives.

    In Middle-East North African region, there is still a very very strong social concept of disability based on a medical model. There are large numbers of people with intellectual disability, but less awareness about it. There is very strong professional control of the voluntary sector, and real difficulty with community groups promoting human rights. Thinking about disability as a human rights issue is often seen as a cover for other political activities and is problematic.

    In Asia-Pacific, which, of course, is such a huge region, there are wide differences between different countries. And while there's a very strong regional disability movement and decade, people with intellectual disabilities and their families have really been marginalized. In the Americas, we found that poverty again was about exclusion, that there were structural causes, and that inclusion and the recognition of rights is not deeply rooted in countries that have relatively new democracies.

    So, what's the difference between what we found, and what came out of the Atlas? I think, really, our starting points were somewhat different. The Atlas looks at services and resources. We started by looking at poverty and the Millennium Development Goals. Because of the focus on services, the Atlas looks at special disability programmes, while we tended to focus much more on generic and mainstream programmes, and why people with disabilities are not being included. The Atlas focuses on what exists, we focused on what's missing, and on who's excluded.

    They are different perspectives, but I think that we can come together around a common agenda, and I think that a lot of hope for the future comes from the new Convention on the Rights of Persons with Disability, because it offers both a human rights framework, and an opportunity for development. And if any of you haven't read the Convention yet, I really strongly suggest that you just take a few minutes and read it, from beginning to end, because it's a wonderful twenty-first century view of the rights of people with disabilities, and how they can be included.

    I think that there are specific messages in the Convention that are very important for the World Health Organization, and I'm just going to highlight a few Articles that I think are particularly relevant. First of all, we fought very hard to have families included, and they're included in the preamble. The preamble now recognizes the family as the natural and fundamental group unit of society, entitled to protection by society and the State.

    And most of you probably cannot imagine what a struggle it was to get those words into the Convention, because for many people with other disabilities, families have been seen as part of the problem more than part of the solution. That families have been the ones who have been paternalistic, who have kept people down, who have not recognized people's rights, and there was a very strong movement on the part of other disability advocates not to recognize the family. But I think that when families of people with significant disabilities started coming to the UN and started to show the importance of their role in the lives of their sons and daughters, who might not use traditional speech to be able to advocate for themselves, we were successful.

    An Article on the right to life. Reaffirming that every human being has the inherent right to life, and shall take all necessary measures to ensure its effective enjoyment. This is probably the Article that is most important to the self-advocates who are on our council, and the reason for that is that they feel threatened. They feel very concerned by language about preventing the existence of people with intellectual disabilities, and they are very concerned about moves to end the lives of people with intellectual disabilities, by not giving them the same quality health care as others.

    The right to legal capacity. We heard an excellent example yesterday of someone meaningfully being asked if he wanted to donate a kidney. Unfortunately, that does not always happen, and especially in the case where substitute decision-makers or guardians are in place, the person with the disability generally has little opportunity to actually have their own will expressed.

    Liberty and security of the person. There is a focus in the Atlas on asylum-type institutions. We would take that further, and say that many people with intellectual disabilities are now deprived of liberty because of where they are being forced to live.

    Freedom from torture. Cruel or inhuman, degrading treatment. Again, many people being punished or treated cruelly in institutional settings, but also being subjects of medical or scientific experimentation. We had a situation a few years ago in Canada, where a prominent medical school was found to be using the residents of the local institution as subjects for the medical students to learn how to do rectal examinations. People who were completely healthy, who did not need a check-up, were being brought in and were being used as subjects for the medical school students. And I'm sure that if this was going on in one of the most prestigious medical schools in Canada, it's going on somewhere else as well.

    Protecting the integrity of the person. Again, issues of sterilization come to mind. Living independently and being included in the community. The Convention protects the right to choose a place of residence, and where and with whom the person lives.

    The right to health. Enjoyment of the highest attainable standard of health without discrimination. Is there anyone here who hasn't heard of the case of the Ashley treatment in the United States? Where a young girl was forced to undergo medical treatment. The hospital has now acknowledged that they erred in the case. But, her parents decided that she should not be allowed to physically mature because it would be easier to care for her. Other situations of being denied life-saving surgery because of having an intellectual disability, or of families being told in the hospital, well, almost being told that having pneumonia is a blessing, because now if we don't do anything, we can let this person die without taking active measures rather than offering the same kind of medical treatment that would be offered to someone else.

    There are a number of steps that we can take together. I think we need much better and comparable data on disability for each of the Millennium Development Goals. We've put together a lot of anecdotal information, coupled with the information that we were able to glean from other existing resources, but we need more. We need tools for governments and civil society to participate in policy development and implementation, that take into account the issues facing people with disabilities and their families. And this is something that we hope the Convention will provide a mechanism for. We need monitoring mechanisms for the Millennium Development Goals as well as for the Convention. And we also need to create the capacity to link the knowledge and expertise of people with disabilities, their families and organizations to decision-making processes, and we hope that this event is an occasion for building those kinds of links. Together we think that we can help to build a better world, and together, we think that we can get a better picture of what that elephant looks like.

    Céline mentioned that our document is available on our website. The address is here, for those who would like to look at it. And I'd like to end by showing you a two minute DVD of some of the pictures that tell the story.

    Despite our best efforts, the pictures won't work, so you're going to have to take a look at the documentation on our website, or we'll have a few copies available at the poster session.

    There's just one more thing that I realized that I had here but forgot to plug, which I really wanted to do. In the area of legal capacity, which is one of the most important issues for people with intellectual disabilities in the Convention, our organization Inclusion International, at our general assembly, adopted the Montreal Declaration as our policy in terms of what we would promote as a way to ensure protection for people. We want people to have access to support, to make their decisions, but we also think that there has to be protection for those situations when substitute decision-making is required, and we really commend the Montreal Declaration as the way to do that. So with that, I'll turn it back to Céline.

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  • Céline Mercier

    Thanks a lot, Diane. And since we cannot watch the video right now, we invite you to go to the website. Now, we will open to the floor. So, if you have any questions, comments, please come to the microphones.

  • Question

    Is it appropriate for this session to actually recommend that the words “mental retardation” be removed from the WHO language? Thank you.

  • Céline Mercier

    I think that there was surely openness from Dr. Jose Bertolote yesterday, and maybe it's really a great opportunity since we are all here, many stakeholders, eight international associations, so it's time to be strategic, and consult, and make recommendations.

  • Question: Roy McConkey

    Roy McConkey from Ireland. Diane, thank you very much for a very succinct overview. A group you didn't mention were professionals, doctors, nurses, therapists. Have we contributed to the social exclusion, and if so, what do we need to do about that, so that we can align ourselves with the goals you talked about?

  • Diane Richler

    I'm trying to think of how to answer that. Certainly, I don't think that as a group, professionals should be tarred and feathered. I think that everyone is a product of their own training and experience, and just talking, there are very few people in this room who weren't involved in something earlier in their careers that they wouldn't want to repeat right now. So, I believe in development, and I think that professionals can learn, too.

    I think the secret is to form true partnerships with families, and to recognize that professionals come and go in the lives of a person with an intellectual disability. Families can be there forever. Sometimes the bond is broken, often because of emergent situations when there are no options for families. When parents are told, as Zuhy said yesterday, forget about this child, and place this child in an institution. Countless of our members have been told that by professionals. From the Mid-East region, we saw how much professionals still really control many so-called family organizations, and it's a very fine balance to know how to support families, and not to replace their role.

    But I think trying to recognize that ideally, the person who has the disability needs to be supported to live his or her own life, and the role of the professional should be to support that to happen, and to support the family to make that happen, and to help them all. And I think that if professionals can help people dream, then they are performing the best service they can perform.

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  • Question

    Good morning, ladies and gentlemen. I am from Zambia, Africa, and I am a self-advocate. At my local level, I am the Vice-General Secretary of the Association in Zambia. At a global level, I am a member for Inclusion International. At a regional level, I am facilitating the self-advocacy workshops.

    The beauty of the United Nations Convention is that it fully participated with the self-advocates, and this is also why I am here attending this conference today. I want to thank Inclusion International, and the WHO Atlas, for making it possible for some of the self-advocates to be in this room. However, our main concern as self-advocates, whatever the platform, is getting respect, choice, participation, and independence. Thank you.

  • Question : Vijay Chandra

    I am Vijay Chandra, from India, and I speak here as an individual, not as a Regional Advisor in the South-East Asia Regional Office. I work with governments a lot, and I work with organizations a lot, and what I hear from governments is that every organization is pleading with them for a prioritization. You know, there's an Alzheimer's Association, the Multiple Sclerosis Society, the Disability Association, and everyone is pleading for the same pool of money.

    And what motivates a planner most of all is the cost of doing things, and how he or she can save costs by implementing programmes. So that is one approach which you may choose to consider in your presentations. How services for the disabled will actually save the government money. Going out on a humanitarian ground and seeking support out of charity and mercy and goodness of your heart doesn't really work with a planner. Thank you.

  • Diane Richler

    That's certainly true, and we've certainly had that experience in talking to people at the World Bank. For example, I think one of the difficulties is that there is so little data available on people with intellectual disabilities. You can see by the responses that came into the Atlas, who responded even. There wasn't always someone in a country who would have that information at their fingertips. And there's nowhere in the world that has really solid data on people with intellectual disabilities, and on the costs as well. What we're trying to do, and we're collaborating with the Bank and the OECD on this is, is not just to look at the costs of various services, but at the costs of exclusion, and what the benefits are. And, what we're seeing is that inclusive programmes certainly can save, when you're looking at the macro level.

    The other issue that I think is very important is looking at government spending overall. If you have a country where 40% of the children are out of school, and you need to build up your education system, it's going to cost more. And when you recognize that about a third of the children out of school right now are children with disabilities, then there is going to be a cost to include those children, there's no way around it. But if governments are really committed to educating all children, they're going to have to pay for it. And they're going to have to take the money out they're going to have to reduce corruption, they're going to have to have fewer wars, they're going to have to have smaller armies. I mean, they're going to have to make a lot of choices, but those are choices that voters can vote for, and I think that we haven't been good about making our case.

    The other thing that I think is important about what we're asking for is that generally, we're not asking for special programmes for people with intellectual disabilities. There would not be enough money to build special separate schools for every child with an intellectual disability who is not in school now. There would not.

    There would be enough money to make existing school systems inclusive, and to make the schools that are being built now inclusive, and the teachers who are being trained now to teach them to be able to teach all students. There's no reason to be building schools now that have steps so that a child in a wheelchair can't get in. And then saying that the child with the disability can't go to this school, we need a separate school for children with disabilities.

    So, there are some things that are just common sense, and if you look at inclusive policy, then schools should be available to all children. Other programmes should be available to all people. And if they are, then there aren't extra costs for every separate group, asking for a separate programme.

  • Céline Mercier

    It's too bad that we have to stop here. I want to thank you very much, and in closing, I want to be just a little anecdotal.

    The first time the Montreal group met with Diane was five years ago, in Rimouski, Quebec, by the St. Lawrence River. At that time, you Diane, were starting to work on “Hear Our Voices”, and on our side, we were thinking of having something like a Declaration on Intellectual Disabilities. We even thought about having an Atlas specific to ID. All of this happened in five years. So just imagine and dream about what could happen in the next five years! So once again, thank you, Diane.

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