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Stakeholders' Reactions to the Atlas-ID

Plenary session

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Presenters

Chairperson

Introduction

  • Patrick Lennon is here on behalf of Jean Christophe Pascale, who was unable to attend. He represents L’Arche community. He has been working for about 36 years with persons with intellectual disability.

Reaction of NGOs to the Atlas-ID

  • Patrick Lennon

    I only found out about a week ago that I was coming to Bangkok, and it’s been rather flurried. I want to thank this conference for inviting L’Arche to come and speak. I represent Jean Christophe Pascale, our International Coordinator.

    First, I’ll get two things out of the way, because I don’t want to focus on them for too long When I looked at the agenda before I came, I experienced a certain sadness. And the sadness was that the people that we’re speaking about are not represented at this meeting. And I think the second thing that struck me today was that people are having to speak in English, that we don’t have the facilities for people to speak in their mother tongue. To speak in their mother tongue and to be understood nad to understand through interpretation. And it struck me this afternoon as rather odd, if we can’t be sensitive to being inclusive with each other, how can we be inclusive with people who often have no voice at all? I think it’s something to reflect upon.

    And I have to say that I find that, because the language is English, and English can be a language of imperialism, and that strikes me, because sometimes, with all of our technology, we can be a bit imperialistic with the men and women that we’re supposed to be serving, so I had to get those things off my chest, otherwise they’d be niggling away and they’d be coming out sort of sideways as I was speaking.

    I actually find the Atlas quite amazing. Certainly, I didn’t need the information inside to know that the lives of people with intellectual disabilities are difficult. I come from a wealthy jurisdiction, the province of Alberta in Canada, where two years ago we had an eight billion dollar surplus. And services for people with an intellectual disability were cut back. I have friends who live independently who are well below the poverty line. My friends aren’t even on the government agenda. I attended a protest a couple of years ago against the provincial government, protesting the cutbacks. There was a man with Down Syndrome who was in front of me and he was angry. I thought he summed it up best when the politicians were speaking. He said “I don’t believe you. You’re a liar. I don’t believe you. You’re a liar.” Because they were justifying the cutbacks, and he knew what was going on.

    So when we talk about human rights, very clearly I could say that my brothers and sisters are deeply affected by the interpretation of public policy today, and how it applies, not only to people with intellectual disabilities, but all those people who live on the margins or on the frontiers of our culture.

    At the same time, I find this is an amazing time. Amazing, because the Atlas has brought us together, and we’re meeting each other for the first time as an international group. I find this so hopeful. As I’m speaking about it, right now, I get goose bumps. As I look out and I look at us, this is really, really remarkable. We’re coming together. Certainly, it’s people with intellectual disabilities that have brought us together. But I believe that there are some underlying values about us being together. Values that are more important than profit, materialism, or militarism. And it’s the value that people, particularly the weakest in our societies, the most vulnerable, belong to the human community. They belong, and by the very fact of their humanness, of their person-hood, they belong. And that in many ways, my brothers and sisters are an essential component to the human community. And I’ll go on and speak about that.

    I think the Atlas also tells us something about ourselves. Certainly it shows shortfalls but I think also it tells us as we share with each other about hopes and dreams that something can change and shift. It tells us something about ourselves and our desire to labour, to create a world that is just and compassionate. Justice without compassion is simply the law. And while laws are necessary, it’s the compassion that draws us together. It’s our desire for a world where we can be accepted for who we are. Today we may be at the pinnacle of our professional career, tomorrow, hopefully, we’ll have a network of people who will be supporting us. But our value will not have diminished and our desire for a world that accepts us for who we are, and not for our accomplishments.

    And I think the Atlas is a first step, and that’s all it is, a first step in creating a wider consciousness because it’s brought us together. It’s a way of seeing beyond our differences and I think therein lies the hope. It’s a dream that what binds us together is far greater than that which can separate us. And what binds us together is our humanity and I believe that is the absolute gift of men and women with intellectual disabilities. The gift that they have for us today is that they have the capacity to bring us together, and that’s what they have done! It’s because of them that we’ve come together. This is an amazing gift. I propose to you that men and women with an intellectual disability are our gurus, are our leaders, on how we can come together.

    This morning and this afternoon we’ve been speaking at the global level. And at about 2:30 or 3:00, my oxygen mask gave out, and I needed to come and land, and I was glad for the break. I want to share with you the next few minutes about life as a NGO, as a human being, at the local level, because that’s where I live, and that’s where L’Arche communities live. We number some 130 communities in 27 countries around the world. We share our life together with men and women with intellectual disabilities and we build community. The whole purpose of taking down the barriers that can be there between, for example, staff and clients, and if you were to go into one of our communities in Bangalor in India, or Manila in the Philippines, or Sydney in Australia, or my own home community in Lethbridge Alberta, it would be pretty much the same. People who are sharing life together, at a simple yet profound level.

    My life has been radically intertwined with men and women with an intellectual disability since 1972. And over those years, we’ve shared meals and dishes together, we’ve taken holidays and days away together. We’ve laughed together, eventually over misunderstandings once we sort of got some plain speaking off our chests with each other. We’ve cried together over deaths, wept over the fact that one will not be married and have children. We’ve cut the grass together, and we’ve killed the household plants together. And I’ve seen John, a man with Down Syndrome, transform the sales staff of one of the snootiest mens store in Calgary. He had four sales people eating out of his hand, and they showed him 22 jackets before he decided on the one that he wanted. I’d never get that service. John was just being himself.

    I’ve listened to Duncan, and his anger, as he yelled at the fact that he had been fired from a job that he loved because he couldn’t work fast enough. There’s no answer. Because I’m handicapped.

    And what I’ve received from my brothers and sisters with intellectual disability is the profound gift of relationship. And that really is what L’Arche is all about, relationship. Everything begins and ends in relationship. And we know that. You know that. You know that in your own lives. You know that in the network of friends that you have. And it’s through relationship that transformation occurs. Each person is valued for who they are, and respected for who they are. L’Arche is a community where we learn to belong together to each other. And we take the beautiful words of inclusion and rights, and we begin to live that together, around the table. We learn how to live with our enemies. No greater love has a brother and sister than you pass the salt and pepper with love, instead of flinging it across the table. And I don’t know about you, but my enemy list changes every day.

    I want to close by telling you a story about John. I helped John do his laundry every Wednesday night for five years. It took five hours to gather, sort, wash and dry two average loads of laundry. During the previous week, John would fold his dirty clothes and put them back into the dresser drawer, or hang them up in the closet, and he couldn’t understand why he had to go through all this unfolding to put them into the laundry basket. When the laundry was finished, clothes put away and the machines wiped down, John would lay his head on my chest, a cigarette dangling out of the corner of his mouth, fold his arms around me, and give me a hug and say “Patrick, you’re one right fine fella.” Every Wednesday night for five years. Even though John learned how to do his clothes somewhat independently, he couldn’t care less. What he wanted was to spend time with me, and the laundry became the medium for building a friendship, that led us into a deep enduring relationship where we were mutually concerned for one another.

    The gift I brought to Wednesday laundry was my ability to organize and teach, gifts of the head. And the gift that John brought to Wednesday’s laundry was his desire for relationship. His gift of the heart. I would propose to you that the leaders of transformational change are the men and women with intellectual disabilities. People with intellectual disabilities have a gift that the world is yearning for, and it’s the gift of relationship. Our role as professionals is to create a safe environment where that gift can be given. My relationship with John taught me that the head is always at the service of the heart. And when we allow our hearts to be touched, we have the possibility of becoming vulnerable and transparent. And all those transformational words that are used in the Charter of Rights, they all start to become real. And our hearts are touched when we enter into a relationship with someone that’s more vulnerable than ourselves. And we in turn discover, I in turn discover, that I am just as vulnerable as the person that I thought I was serving.

    Thank you.

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  • Armando Vasquez

    Paul Young is the former chair of the Council of Canadians for Disability. He founded People First of Nova Scotia, and was a founding member of People First of Canada, and the former president of the national organization. You can read Paul’s biography in the brochure of the conference, it is an excellent biography.

Reaction of Self Advocates Atlas-ID

  • Paul Young

    Thank you very much. I’ve only got a few minutes, so basically I have been labelled with a developmental disability, and one of the reasons I’m here is because I was in Montreal in 2004, when we did the Montreal Declaration on developmental disabilities. Then in May of 2006, I was invited back. They must love me. At that time, we talked about social inclusion and I just want to say that I am, as I said before, a person who has been labelled. I have been President of People First Canada, who speaks on behalf of those who have been labelled with developmental disability, so I feel I’m qualified to be here. I know that the organizers in the World Health Organization feel the same way, and I thank them for that.

    I want to get to the heart of the matter, but before I get to that, I want to congratulate the World Health Organization on the Atlas-ID. It’s a lot of work and research. It’s a first step. But I want to talk about resources. It’s titled World Atlas: Global Resources for Persons with Intellectual Disabilities, and I want to talk about resources. Resources based on what? Based on a label? In 1961, I was labelled that I was a mentally retarded person. Based on what? Based on the fact that I couldn’t dress myself? Based on the fact that someone had to look after me? Based on the fact that I had cerebral palsy, or I took seizures, I had epilepsy? Some people said I had a disease, some people said I had a condition. All based on the fact of medical needs and medical models. No one told me who I was, not even my parents told me who I was. They said that I had a handicap, and was not like everyone else. They said I would never do anything, and here I am in Bangkok Thailand in 2007, and when I was supposed to be dead at five years old.

    So let’s talk about resources. Resources said that I was this person, this person who attended a shelter workshop in Sydney, Nova Scotia. Incidentally, it’s spelled the same way as the big Sydney in Australia. And it was established that I was a person with a developmental disability. Anyway, there I am, a person with a developmental disability. The resources said that I had a developmental disability. Suppose that the World Health Organization came up with resources then, and the resources were based on attitude. The attitude that these people in this article have, that you see here, will never work.

    Now, what I call this resource is the cocoon of impossibility. Based on my disease, based on my disability, based on the fact that people have an attitude, that these poor unfortunate people only can get gifts, only can get gifts of kindness, only can get gifts of loving. We can give gifts of ideas, we can give gifts of belonging, and making you feel as belonged as we want to belong. In the cocoon of impossibility, I was told by resources at the Hiring Employment Training Centre, which was a Shelter Workshop in Toronto Ontario Canada, that I would never work in radio. Resources said I couldn’t do it. My parents believed those resources, and they said I couldn’t do it.

    Then I met these two gentlemen, who had nothing to do with medical models or resources or people with developmental disabilities. All they had were resources in music and radio. One was an announcer, a radio announcer Mr. Jay Bedford, with the glasses and tie on. The other was Walter. Walter was an audio technician who knew how to record great music. And they both said that I could do this. They realized that I was a person who had an extreme interest in music and in radio. They believed in me; never saw my disability, never saw my developmental disability or never saw my cerebral palsy. Doctors and professionals and health people had put this out to me, but they didn’t notice. All they saw was this guy who wanted to be in radio, all they saw was a guy who knew music inside and out.

    So, what did this do for me? It gave me a belief, the belief that I could do something. I was the chair of two national organizations for disability rights, and I proved that I have some ideas on how people should be treated. I teach in community colleges, in my home province in Canada, in Nova Scotia, and I got an honorary diploma in 2006, in June. Never did I ever think I would get an honorary diploma. I noticed today there were a lot of doctors introduced. Well, I’m not a doctor, but you never know. I’m not dead yet.

    So here I am, receiving an honorary diploma from the community college of my hometown in Nova Scotia. It was quite an honour, and quite disbelief, because I still believe some of the things they said about me. Now here I am, years later, a so-called professional, a consultant, and I think that that can be even a disability, because the worst thing you can be is a professional, or an expert, because the minute you become an expert, you become the problem.

    So, I just want to say that it’s fine to develop an Atlas, and its fine to talk about resources, but are the resources based on humanely, are the resources based on inclusion and social inclusion where someone can give to the community, and not give a hug but give by teaching, give by earning money, give by working and contributing to society? And I hope that I have. And I know that many of my colleagues, and in People First Canada, and in the People First movement around the world are trying to do that. But the labels get in the way. The labels define us. So if you’re going to use labels for resources, forget about it. Get to the person, because Walter and Jay got to the person and they discovered that I didn’t have a disease. That I had ideas. There’s only one thing important when it comes to people with my history. To recognize that they are human beings and human beings need certain things.

    I won’t rhyme them off today, because I’m speaking again on Thursday and I’ll elaborate with a lot more time, I hope. I’m going to make a public announcement that they have assured me that I will have a half hour to speak to you, and I’m holding them to it. So with that, I will leave you to think about resources, because resources are based, as I said, on attitude. The attitude is that we’ve got to protect these dear people, or protect them from society because they’ve got a disease and the Atlas won’t work.

    Thank you very much.

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  • Armando Vasquez

    Thank you Paul, for your very interesting testimony.

    Now, let me introduce Mrs. Zuhy Sayeed. She's the President of the Canadian Association for Community Living, and past president for the Alberta Association for Community Living. She's involved in the UN Working Group on the Rights of Children with Disability, and she represented Inclusion International for the implementation and monitoring process for the UN Standard Rule on Equalization of Opportunity for People with Disability. She acted as co-chair of the Disability Caucus of the Child's Right Network during the UN review of the Convention on the Right of the Child. She has received various rewards and recognition for her contribution to community. She represents the family, and we want to hear your reaction.

Reaction of Families to the Atlas-ID

  • Zuhy Sayeed

    Thank you very much. I first want to let you know that I have been very nervous about the fact that I was going to follow Paul’s presentation, and listening to him speak has just increased my nervousness a whole lot more, so Paul, thank you. It’s always very difficult to follow you, and you certainly have made some amazing points that I think it will do well for all of us to continue to think about and reflect over as we are together.

    Just as a beginning, the Canadian Association for Community Living is a national organization in Canada that is made up of a provincial and territorial organization in each of the 10 provinces and the three territories. And we’re made up of about 420, and growing every day, local organizations that provide family support, services, and advocacy in local communities.

    I must agree with my colleague, Patrick, who talked about this being a very exciting time. Paul, who talked about the fact that we are together here, has presented us with some very critical things to think about. But I too must say, as a family member and as a mother, yes, we are at that very exciting time. All over the world in many countries, and certainly in many communities in Canada, we have now had young people with disabilities, with intellectual disabilities, being included in every aspect of community life, today more than ever before. And it is these young people, and their families, who will change the way of how we look at intellectual disability, how we look at supports and services in our communities, and as the Canadian association moves toward 2008, when we will celebrate our 50th anniversary, I do agree that we are at a very exciting threshold.

    I think, certainly, many of our sons and daughters have turned the service industry and the service programmes upside down on their heads, and as we continue to do bigger and newer things, and I hope that there will be many countries in the world that will start to look at and put in place the number of new experiences and the new supports that are available for families.

    So, to the Atlas, and I must thank the organizers for inviting me here. Certainly the Canadian Association with all of its members and our families are very excited at the fact that the Atlas actually brings us together, as we have heard, but it also gives us a first time forum for a discussion on intellectual disability. And for us, in our movement, it is wonderful that we have this kind of global forum and global discussion. So, yes, the Atlas has that as one of its strengths, and certainly it not only brings us together but it brings international attention to the issues. We found the Atlas to be very comprehensive in the range of issues discussed, and we are very pleased to see that there is a progressive agenda, that can continue to be built on. We hope that the Atlas, at least in its section on the Way Forward, can continue to be a living document that we can revisit as the years go by. And, of course, being a rights-based framework is something that we need to celebrate in today’s world.

    While there are strengths, I must be honest, as well, and share our concerns with you. We agree that this is a very important and impressive document that it has the agenda, but as families we need to challenge the starting points, and I’ve laid out the four starting points for you.

    We need to continue to talk about how we define intellectual disability. We must acknowledge that in the Atlas there are assumptions of “burden of intellectual disability” to families and to society. We need to talk about the framing of prevention as a public health issue. We need to think about how family support is conceptualized. All of the approaches on page 100 of the Atlas are all based on the notion that intellectual disability is a deficit and a problem. In fact, it is a statistical effect of the normal curve, and in this case, and through many of our personal experiences, it does present unique development paths.

    As an early childhood educator and as a mother, I know that all children have unique developmental paths. In fact, my personal experience that I will bring to you, not in as much detail as I would have hoped to, but our son with intellectual disability or developmental disability, which are the two terms that we use in Canada, was born almost 26 years ago, and twenty-six years ago we were told to completely discount his birth, that he would never walk or talk, that he would never add any value to society. That in fact, the resources would be wasted on him, and that we shouldn’t worry about putting him into school and using the school’s precious resources. “Put him in an institution, and just forget about him and just concentrate on our oldest son” was the advice we were given at that time.

    We were also told when he was three years old, that he would never get past grade three, grade five at the most if we were ‘really lucky’, because we were really starting to push the school system at that time for regular education and a regular classroom for our son. Today, he has earned a diploma in post-secondary education, which means he has gone through the education system in Canada. He is pursuing his dreams of one day owning a hotel. None of this would have been possible without the kind of support that both the Association for Community Living and the community gave us, and without the kind of work and the following of a unique developmental path that we actually forced people to look at 26 years ago.

    In Canada, our work for all of these years, and particularly the last few months, has really resulted in major discussion as to how we would continue to bring disability forward onto the agendas of the decision-makers, and particularly in Canada, the politicians as we know it. We need to see disability as a natural part of human diversity. Our understandings of human genetic diversity have to include people with disabilities. And once we start doing that, the way becomes quite clear and fairly straightforward.

    We need to be able to look at the systems of classification that we use, and there are lots of examples in the Atlas. Actually, even the input that has come from all of the countries has proof that the systems of classification and assessment continue to reinforce the idea that there is only one way to develop, one way to communicate, and one way to function. As families and as parents, we need to continue to challenge this idea, because it creates societal expectations that will harm our children. In fact, I was at a forum in Canada just a few days ago, and I wasn’t able to get hold of the actual statistic in order for me to present, but I do know that research shows us that the cost of not including people with disabilities in every single aspect of society, as productive citizens, actually has a huge cost, and most of the time we do not take into consideration that cost of what it means to segregate people, of what it means to not let them meet their potential and what it does mean to actually allow people to grow, thrive, live and work in our communities.

    We need an approach to assessment that recognizes the unique developmental path, that establishes the self-reference kinds of approaches to goals and accomplishments, that the indicators that we use aren’t indicators that have been decided for people, that a person must be able to decide that indicator and how they grow and thrive in their abilities based on their individual needs.

    Regarding the “burden”, or the assumption of intellectual disability: on page 72 of the Atlas, in recognizing the role of families, there is a statement there that ‘the care of children with disabilities by productive adults represents a substantial burden to society’. The focus of family support is seen as enabling adults to remain as productive members of society.

    Caring for children with disabilities is not unproductive. We have recognized that early childhood development and that family support is essential to maximize a child’s potential. This is true for children without disabilities, as well as for those with disabilities. I cannot emphasize that any more, I wish that there was a little more time to do that.

    Children with disabilities do not cause a burden. What causes the burden is the stress to the families, and as one of the previous speakers this afternoon talked about, is the interaction between a child or an adult with a disability, and the environment in which they live. It is the constant barriers that we, as families, face that continues to constitute the burden, whether it is lack of financial support, whether it is lack of family support, or lack of community welcoming, and the attitude of people.

    Intellectual disability as a public health issue is the third point I wanted to discuss and I’ll do this very quickly. It suggests as a way forward to us and to me, as a family member, as a mother, that public health strategy for people with intellectual disability should focus on prevention. In fact, many of our public health offices in many countries do focus on prevention. We need public health strategies and public health thinking to build healthy families, healthy inclusive schools, and healthy communities, and workplaces that would account for and support the diversity that intellectual disability brings.

    This is not to say that there shouldn’t be teaching on good maternal health strategies, pre- and postnatal care, including programmes to educate women and educate communities about danger to their health from drinking and smoking and good maternal nutrition while they’re pregnant etc. We need to prevent the behaviours that we know are negative for women’s health.

    But in many cases, the prevention is based on preventing a disability, and the rationale for these programmes is because intellectual disability might be the result of not following this advice. That’s what it does suggest, and we really need to change that thinking.

    So, a combined approach of prevention of intellectual disability through genetic technologies and changing behaviours sends one message and only one message to society. “It would better if they were not born.”

    It is this belief that creates unhealthy, exclusionary communities, and promotes the kind of myths that we continue to hear about and the kinds of barriers that women face in bringing up their children. So, the detail of creating healthy communities need to be focused on helping children and families maximize developmental potential, helping communities establish inclusive environments, where children grow and develop into productive adults, and that families can then celebrate in their children, families can then revel in their son or daughter as they would for any son or daughter.

    What does this mean for family support? If we start from a different starting point, that intellectual disability, as Paul says, is not disease or impairment, but rather a natural part of human diversity, and that we need to consider the full range of social determinants of health, to be shaped to maximize everybody’s developmental potential, and that we have the public health strategies; then we might think about the need for family support in more expansive ways. We need to work with many stakeholders, plus we need to seriously look at a six point family support agenda, developed through the work of our organization, that looks at various dimensions for family support. I can talk about the details later and I can make a copy of my presentation available. I’m also willing to talk to any one of you about the six point agenda.

    But we really need to begin thinking about disability as that natural part of diversity, we need to stop equating disability with ill health, and we need to ensure the inclusion of intellectual disability in other efforts to advance healthy child development, education, and other social determinants. We need to stop making intellectual disability a rationale for prevention efforts, we cannot anymore equate families’ efforts to nurture and raise their children with intellectual disabilities as unproductive.

    I will leave you with one thought. That the challenge to World Health Organization (WHO), to the UN and to all of us is to create a proactive family agenda with broad understanding of issues, in collaboration with families who have family members with intellectual disabilities, individuals with intellectual disabilities, self-advocates, as our people prefer to be known, communities and governments. No question. We are at an exciting and critical threshold, but I must add a bit of urgency to that excitement. There is no time to lose. Our sons and daughters are depending on us.

    Thank you.

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  • Armando Vasquez

    Thank you, Zuhy.

    Now, the last speaker is Rob Greig. He is the National Director of Valuing People. He works alongside Nicola Smith. This means that he and Nicola lead the delivery of Valuing People at a national level. This work is about telling people in the country what the government is doing for people with learning disabilities, and telling the government what people with learning disabilities in the country want to see happen, supporting and encouraging new ways of working, so that people's lives improve. This involves working closely with the government offices on the disability issue, whose job is to make sure that all government departments are working together to make things better for disabled people.

Reactions of Governments to the Atlas-ID

  • Rob Greig

    I’m very aware I’m the last speaker of a long day, and that you, like me, might be suffering from jetlag. I’m also very aware that I’m following, with due respect to all the other speakers, probably the two most important presentations today, a presentation from a person who experiences the life we’re talking about, and from a family carer as well. So, I’ll try and be as brief as possible, but I’ve been asked to talk about a perspective from government. And, yes, some politicians might be liars, but some aren’t. We’ve got to find a way of working with governments, because governments are the ways in which change happens in public policy. So I’m going to try and just give a few thoughts on that.

    To introduce myself, very briefly, my name’s Rob Greig, and my job is the National Director for Learning Disabilities in England. About terminology and learning disabilities, I was wondering if I should say anything or not about it, but I’ve been almost invited to do so by so many other speakers I can’t not do it. Intellectual disabilities or mental retardation. In England, we have got a sort of democratic forum of people with learning disabilities, that’s the phrase we use, from all across the country, and when I told the chairs of that national forum that this report showed that “mental retardation” was the most commonly used term in the world, they asked me to tell you they are very offended about that. Yes I know there are issues about how words are translated, but if you’ll take it as not being a case of language imperialism, then speaking from England, the original home of English, I’d like to say that if people with learning disabilities or intellectual disabilities in England say that the term “mental retardation” is offensive, then picking up on the comment that the World Health Organization is the servant of national governments, then it seems to me that one of our first jobs after today is to all go back and tell our national governments when they next go to the World Health Organization meeting, they should tell them to stop using the term “mental retardation”.

    In my role, I job share with a woman with a learning disability called Nicola Smith, who would be here today were she not in hospital. Although I do have to say she would be having difficulty in following the proceedings. I’m really sorry that you haven’t got a PowerPoint presentation from me. The technology didn’t work. All I can say is that my presentation was in an easy read English with pictures and graphics, to hopefully help people to follow it. Our role (Nicola and I) is to provide national leadership on the Valuing People policy, which is the policy in England. I need to explain our role, to help you understand why I’m perhaps saying some of the things that I’m going to say.

    There’s two bits to our role. The first is that we are there to represent government to people with learning disabilities and their families and organizations in the country of England. The second is that we are also there to represent the views of people with learning disabilities and their families back to government. That’s a wonderful conflict of two things, which explains why I’m not perhaps the world’s most typical government spokesperson, having been asked to speak about government - that and the fact that I’m not wearing a grey suit and tie today, of course. But I want to put myself a bit in the minds of some of my colleagues in government, and how they would react to this document. Bear in mind that in England, we’ve got a policy which is, or tries to be, very rights based, but still with all the problems that were described in that excellent session, just before lunch.

    In seeing this document from a government angle, I think the response would be that this is a good and interesting start, but where’s the detail, what does it tell us, and what do we do next? There are three main questions I think we’d get from governments that they would be interested in when looking at this document.

    Firstly, government will want to know how can it make sure that government policy will have an impact. There’s a problem with a lot of governments, and politicians in particular. They think that if they decide a policy and announce it, everybody will immediately hear about it, will immediately understand it, will immediately want to implement it, and then go away and do it. They’re completely wrong. I would suggest that for most government policies, most people with learning disabilities and families, probably don’t get to hear about the detail of it, people frequently don’t understand what the policy says, they probably won’t want to do it, particularly those powerful professionals who might lose out as a consequence of putting a new policy into action, and if they do want to do it, they might not know where to start. So my first set of questions around this document, is that I think the next stage is to help us understand what works, and what doesn’t work, in terms of putting policy into practice.

    So, for example, where has government policy had an impact, and things have changed for the better? For example, we’re putting in quite a bit of effort and money, into trying to promote self-advocacy and family leadership in England. Is that having an impact? Is government policy being delivered more effectively in a country that’s trying to do that, as opposed to countries that aren’t doing that? Or are we actually wasting our time and effort, because it isn’t working in that way? How can we learn more about the actual processes of change? And crucially, are things that are working in one country transferable to another country? These are questions that I think, as we look more closely at the detail of this report, it would be good to understand more.

    The second of the three questions I think government might have is about the priority of learning disabilities, and asking what strategies help to give it political priority from Government. Now, this is the one bit where I really need the PowerPoint slide to explain what I was going to talk about. But I would suggest to you that governments in different situations respond differently. They’re all different politically, they’re all different culturally, and so it’s impossible to have one answer to this question across the world. But there is something about the economic and social position of a country that will make it easier or more difficult for a government to want to give priority to marginalized and excluded sections of society. If a society is in trouble, for whatever reason, then it’s very easy to continue to put on the side and ignore people who’ve always had a raw deal. That’s why the rights-based agenda is so important, so we understand that it’s a matter of rights that people with learning disabilities should have access to work, and education, and support, as opposed to something that societies do and governments do when they can afford to, or when the political climate is right to do that.

    The third question is about the role of government. What should government get involved in doing, and what shouldn’t it? Whenever I talk with people with learning disabilities, they always say to me, in broad terms, that they want the same kind of things as non disabled people. They want a place to live, they want paid work, they want to be treated with respect, and they want to have relationships, including sexual relationships. They want the same thing as everybody else does.

    I would suggest to you that quite a lot of those things are not the job of government to sort out. Government can have an influence, and there are some things where government does have a clear role, for example, in trying to ensure there’s a health service, that gives people good health care, in making sure there’s appropriate funding to support people in their daily lives. There are some other things that government has an influence over, for example, helping people to get jobs. But it isn’t the job of governments, I would suggest, certainly not in the society I live in, to actually provide jobs for people.

    So therefore, one of the key challenges is to learn from different strategies across the world, about what works, what helps governments do the things that governments should be doing, but not get in the way of positive things happening to people that are the job of other people in the society as a whole. It’s part of my view that one of the jobs of government is often to get out of the way, and let communities and societies get on with their lives. There’s a wonderful phrase that family carers of people with learning disabilities in England use quite a lot. And that is, that their challenge is to help their son or daughter to escape from “serviceland”. In other words, their sons’ or daughters’ lives are being controlled and determined by what services have decided they should do, rather than what the person and their families and their friends and their local communities want them to do.

    So those are the questions that I would suggest. Within the report, there’s lots of really important nuggets of information. I think that I would be interested in getting at the next level of information underneath it. One final example of why we should understand the detail. The way in which public policy is located in different departments in different countries is contained in the report. Does it matter? We have an attempted social inclusion agenda in England, but the lead Department that employs me is the Department of Health. So that makes it really difficult to get the Department for Work to think about employment for people with learning disabilities, and the Department for Education to think about education. Rather bizarrely, as the policy is located in the Department of Health, probably the worst public performance around people with learning disabilities in England is access to mainstream health care, so we don’t even get the good news we ought to get from being in that particular department.

    So my question is, does it matter which Government Department takes the lead, and if it’s located in different places in different countries, is there somewhere that helps, or is that just a pointless structural argument we’d be wasting our time with, and let’s get on with the job of supporting people to have better lives.

    So my concluding comment on this, from a government perspective, or my view of a government perspective as I said I’m not the world’s most typical government spokesperson, is that this is a good start. There are some good pieces of information in there, but let’s get into the detail. The key and most important question is what process is this starting, because it needs to start or to build on a process of supporting champions around learning disability or intellectual disability - to learn from each other and network across the country, network across the world. My parting comment on politics and government, from the six years I’ve been doing this job, Nicola and I report directly to the government Minister. We’ve reported to five government Ministers because they tend not to last very long, nothing to do with us. I would say that one of the Ministers has been really keen to do something about improving the lives of people with learning disabilities. One was quite happy to do so, if they could. The other three wanted to do what they needed to do to keep the learning disabled happy while they focused on other priorities. Politicians will not necessarily be pressing for change, so we’ve got to support the champions, who are almost certainly outside government, to hold their governments to account locally. If we can learn from this report on the best ways of doing that, then that would be a very good thing. Thanks for listening to me at the end of a long day.

  • Armando Vasquez

    We have a few minutes for questions or comments in order to complete the programme today. Does anyone want to ask the panel a question or make some comment? OK, everything is clear. I’m so happy, because this has been an excellent panel.

    The testimony of Paul is very useful for everybody, not only for persons with intellectual disabilities, but for all persons. The history of the life of the person with this experience demonstrates that everybody is capable to obtain what he or she really wants. For Patrick, I think it is very important to work together with all sectors, we have to work together with the persons with disabilities, their families, and their organizations. They are the main populations that we have to target for interventions through their quality of life.

    For the perspective from the family, I totally agreed with what Zuhy Sayeed said. It is important that the whole family is trained in the participation of the whole process. Not only in the rehabilitation process, the health process, but also in the participation process of the person in the community, in taking the responsibility and fighting for his right to health. Speaking of the right, we cannot forget that it is also the duty of the person. We have the right for maintaining good health, but I also have a responsibility for maintaining my health, for example. It is both a right and a duty.

    The final point was the perspective for the government. It’s very important to provide all kinds of information that help the person and the organization to participate and to include and integrate in the whole process related to rehabilitation, health, and what I have to do, in my family and my community. And also to promote my right and promote better quality of life for everybody.

    Thank you everybody, thank you to the panellists, thank you for the excellent presentations, and have a good evening.

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