Closing Remarks and Adjournment
Closing Address
-
Paul Young, Young and Associates (Canada)
Next Steps: A Perspective from a “Labelled” Person
Closing Remarks
-
Dr. Gaston Harnois, Director, Montreal WHO Collaborating Centre for Research and Training in Mental Health (Canada)
Chairperson
-
Yves Lachapelle, Université du Québec à Trois-Rivières (Canada)
Introduction
-
Yves Lachapelle
Dear distinguished guests, I would like to present to you this gentleman. Paul Young is an internationally recognized keynote and motivational speaker. He also has considerable experience as a panellist, seminar participant, group leader, and consultant on disability issues. Paul is the former chair of the Council of Canadians with Disabilities. He founded People First of Nova Scotia, and was a founding member of People First of Canada, and a former president of a national organization. Life is his podium.
During his youth, Paul Young was labelled mentally challenged. He spent the early part of his adult life in a sheltered workshop. Thanks to his determination and with the support of key people, Paul advanced from a part time position at a private radio station to a full time career with the Canadian Broadcasting Corporation as an audio-technician. Since then, he married, bought and paid for his home, learned to drive, and has completed his high school education at night. Paul left the CBC in 1998 and started Young and Associates. He lives in Sydney, Nova Scotia, with his wife Marilyn. His signature story is based on his life experience.
More recently, Paul received an honorary diploma from the Nova Scotia Community College, in recognition of his work on disability rights, which is the highest recognition one can receive from the college for representing their vision. Mr. Young has given talks at national and international levels across Canada, several USA cities, in Brazil, the Netherlands, and now Thailand.
On a more personal basis, I had the privilege to be seated next to him at the first International Conference that was held in Montreal in 2004. Then he accepted my invitation as a keynote speaker at the International Summit for the Alliance on Social Inclusion, and addressed 1200 participants from 27 different countries. Paul's wisdom touched me, and I am honoured and privileged to have the chance to introduce him, and pay this humble tribute to his work. Dear distinguished guests, Mr. Paul Young.
Next Steps: A Perspective From a “Labelled” Person
-
Paul Young
Thank you, Yves. It's always amazing to hear that introduction, because as you might remember the other day, according to the resources that were available to my parents at the time, this was not possible. It was not going to be possible that I could become this person that speaks internationally. To imagine that I would be here in Bangkok Thailand, that I would be here as a speaker, and not only a speaker, but having the closing address, is really amazing to me. And here's why. Oops, that's my commercial, forget about that. That was my website, you can check that out, for those of you who have my business cards. But, let's get serious for a moment.
I've heard many things over the past few days, all based on the Atlas. And the Atlas shows the resources that are available now. And the Atlas talks about the disability, it talks about the disease or the condition, it talks about facts and figures about persons who have developmental disabilities. But I want to quickly review my life. Here I am, at nine years of age, in 1953. I was born in 1944, which makes me 63 years of age. And I was brought home to die. Someone just talked about dying and about parents, and I could share stories about that, but I was supposed to die. I was not supposed to live past four years of age. So, on top of that, the concern was what was going to happen to me and my younger brother, who was going to look after us when my parents died, what were they going to do about this person who has a developmental disability?
Now, to make a long story short, we lived in a small town at that time, and then we moved to a bigger city, the other Sydney. Trevor comes from the big Sydney, I come from the little Sydney, in Canada, in Nova Scotia. So when I moved there, I entered a sheltered environment. I entered the segregated classroom for people with developmental disabilities. And that's when I learned who I was. Because my father told me that I was handicapped, that I was not like other children. And that's when I learned that I was this person with a developmental disability.
In those days, of course, we were known as “retards”. In this newspaper article in the Cape Breton Post, in 1964, it describes what the local service group is doing, the Kinsmen, they called themselves at that time, and they were starting a sheltered workshop, so that people with my history would have somewhere to go, or something to do. The article went on to say, as I cut it out and only showed the picture, the article went on to say how “retards” would never work, they would never be able to do anything real, but we're giving them a place to go to pass the time away.
Now, this entire environment, all this talk about disability and developmental disability and categorization and whatever else you can come up with describes only one kind of thing to me, and I describe it as I do in my lectures in community colleges, and that's the cocoon of impossibility. Where I am a problem, where I am a disease, where I am some sort of a medical problem to study, where I am someone who will never do anything, where in this cocoon, as you can see, there is a shadow of someone with their head down and their hands on their knees. It doesn't describe who they are, it describes what they can't do, what they will never do. That's what it describes, and that was my Atlas of resources, and do we want to create more of that, or do we want to look beyond the disability, and look to the humanity, the commonality of people?
I belong to it, that's why we call it People First of Canada, it's about being people. Not a specimen. Not something to study. Society doesn't want to hear about disability. I know there are some people here, and I have some friends with disabilities across Canada, who like to wave the disability flag. I have a disability. Well, quite frankly, ladies and gentlemen, society doesn't want to hear about that. They don't care whether we have rights. We have some rights. What have rights done for us? Thirty five to forty years later, we're still talking about disability. People want to hear what you can do. People want to know that you have something in common with them. The cocoon of impossibility doesn't do any of that. It just perpetuates the fear and the disbelief of people, and that, “My God, I'm glad I'm not them, because I wouldn't want to have a disability”. And people don't. If I had a life to go over again, would I want to be labelled? No way.
Now, the gentleman earlier talked about relationships. I found two people in my life through relationships that took me out of my situation that took me out of my cocoon of impossibility. Their names are Jay and Walter, and I spoke about them the other day. And briefly again, they had a common interest with me, not on my disability, not on the fact that I couldn't dress myself until I was 21, when I learned how to tie a pair of shoes, not on the fact that I took seizures until I was 11 years of age, no, on the fact that I had an interest in radio, an interest in all kinds of music. That's where they came from. They saw my love of music, they saw my love of broadcasting, and they wanted to help me as a person, not as a person who was retarded, not as a person who has cerebral palsy, but as a person who knew music and knew popular radio in North America.
Now, this gentleman here, and we're talking about professionals and doctors, this gentleman is a doctor. He was an ear, nose and throat doctor, and I happened to have some problems with my nose bleeding all the time. And I went to him, and we got talking about what he was up to. He owned a radio station. My other friend Jay told me to get a job with this gentleman. I went to him. I asked him for a job. He gave me a job as a record librarian, looking after things and running errands. And I spent three years there. And when Walter met me, he trained me how to become an audio technician.
These people saw something in me. They didn't see a disability. In fact, they didn't even know about a disability, Jay and Walter. The doctor knew, but he had other things in mind. He looked beyond my medical condition, and in a documentary which this shot was taken from, he described my inabilities but he also said what I could do. Then I met another man, who came into my life. This man happened to be the manager of the CBC, the national local radio station of the Canadian Broadcasting Corporation. He believed in me as well. He said, we're going to get you a job here at CBC, and you're going to become an audio technician. And he believed in me, not because of my cerebral palsy, but because I had an interest in broadcasting and in music.
There I am at work, operating what we call analogue equipment, tape machines and that. Now we're into digital, we don't use any of this anymore. And even saying that I left the CBC, well the CBC left me because technology changed and then they downsized. There I am an audio technician. Not a person with a developmental disability. Nobody at that station, after two years, knew who I was. All they knew was that I was Paul Young, an audio technician. They didn't know that I had cerebral palsy. They didn't know that I was mentally retarded. They didn't know anything about that. All they saw was this man who was a technician.
Of course, I did everything that everybody else does. I got married. I got married 23 years ago, and I married somebody in the workshop. I didn't marry someone who was able-bodied, I married another person who was labelled. And we're still together after 23 years. I earned money, became the owner of a house. I bought a home with my brother and my wife. We owned a home up until about a year ago, when I sold it and we went our separate ways, and my wife and I live in an apartment, but I was a homeowner, not a person with a developmental disability, I was a homeowner. A tax payer, I paid a mortgage, I bought furniture, I paid interest on furniture, I contributed. I learned how to drive a car, because of my ability operating equipment at the CBC. That's another thing that I never thought I could do, based on resources that said I have a developmental disability.
I have friends, I have some very good friends, and I think that Patrick, I think it's Patrick, where are you? Forgive me for not remembering your name. Patrick said that relationships are important. Well, they certainly are important. They're the most important thing that's in my life. Whether doctors and psychologists and psychiatrists, they may be important at a certain point in time, but these are the people who mean the most to me, these people here.
Now, let's talk about other people. Let's really talk about this. All right, some of you are going to say, well wait a minute here. Somebody made a huge mistake. He's not developmentally disabled. He's not retarded. Someone made a big mistake. I'm here to tell you that I really believed and still believe in certain cases that there are some things that my mind can't handle. I'm no good with figures. I can't remember things very well, I have to be told and told and told about it before it sinks in. And I'll stand up here and someone will say, “Well how can you speak about other people who have specific disability needs?” Well, I have experienced everything that they have experienced , disbelief, doubt, and just disregard for myself as human being.
This is my brother Tony. This is my brother Tony in an institution. And I, because of my involvement with People First Canada, which believes that institutions should close, got him a home in a group home. He lives in a small option, as we call it, in Nova Scotia, with three other people. And here is the transition. There is my brother Tony now. Incidentally, he loves music. He loves going for a drive. He loves to eat. Boy can he eat. And he can feed himself a bit.
I have another friend in Ontario Canada. His name is Rob. Rob is a person with specific disabilities as well. He can't walk very well. He needs support to walk. He needs personal care, 24 hour care. His family is helping him. He has met friends. He had a job in a place and he started a friendship with this person where he worked, and they're still friends today. In fact, when I called the other day on Skype, his mother told me he was out with his friend. Now, Rob was institutionalized for a while but he got out and he came home. Rob should be there. So what right do I have to speak for other people? Because I have experienced the same thing, only my disability wasn't as significant as theirs. And they need support as well. But they need to be seen as human beings as well.
Yesterday, we had a meeting of what you call self-advocates, but what I call people with my history. And we talked about how we felt about the conference, and if I can recall correctly and read some of this, we felt that there should be more people with developmental disabilities attending the conference. There were, I think, four countries represented by people that had disabilities. We would like to see the World Health have more people involved, more people come, and that sits well with me because I don't always need to be the star.
We want the World Health to help promote self-advocacy, to help, quite frankly, the People First movement to grow. It is very fragile, it's a bit strong in Canada, it's strong in the United States, and it's strong in England, I believe, but in other countries it's weak. We would like to see the World Health Organization promote self-advocacy, or the People First movement. And we want to see more things in plain language, or I call it clear language, other people call it plain language. And that's a whole other topic I could talk about for another hour. So there we are. Now, some of you have been talking about the cost of things. Well, I don't know if you can see that. Yves, would you mind reading that?
-
Yves Lachapelle:
Yes. It says that prior to 1979, Paul cost the provincial government $38,000 in 1970 dollars. From 1980 to 1998, Paul made approximately $498,000, and contributed approximately $150,000 to the national and provincial economy, through taxation in 1998 dollars.
-
Paul Young
So, if we're going to talk business, folks, let's talk business. What's wrong with this picture? Here I am, costing $38,000, and then I contributed $498,000. What else have I contributed? My views, my life experience, my commonality with other people, my sense of concern for other people. I have to tell you that I am the luckiest man on the face of this earth, because I should be still in a workshop in Sydney, Nova Scotia, Canada. I met a doctor, I met Walter and Jay, and then the whole thing snowballed into something that no-one, especially me, expected. I never expected to be where I am today. It wasn't set into my mind that I was going to be an international speaker, speaking in Bangkok Thailand, in 2007 for the World Health Organization (WHO). That was the furthest thing from my mind, and the furthest thing from anybody else's mind.
And what I worry about is the other people who I went to the workshop with and who are still there, and all the potential and all the waste, the waste of humanity sitting in the resources that we talk about, the resources that say that we can only do mundane things. Mundane things like washing dishes. As I remember, I think I told you on Tuesday that the guy in the workshop in Toronto Ontario, Canada, said that I wouldn't be able to work in radio, but I could wash dishes in a restaurant. Well, how wrong was he? So, we have to get our mindset out of resources about disability, and into resources about humanity, and being human.
I attended the UN ceremony on disabilities in 1998, and remember the article in the Cape Breton Post, about establishing a sheltered workshop in Sydney for the “retards”? This is a newspaper article on the front page of the Cape Breton Post. It doesn't say a Sydney “retard”, it says a Sydney man attends UN ceremony, a Sydney man. Incidentally not from Australia. And you might recognize this other gentleman here. And this article, I believe was in the Montreal Gazette. I don't remember if it was on the first page or not, but it was in the paper. And I was part of that conference on the Declaration. And there was Yves and I.
And this was the anniversary of Anne Frank's death 60 years ago, and Anne Frank was involved with the Holocaust, and I'm sure you know who Anne Frank was, and there is me, representing the Nova Scotia Human Rights history. There I am a person who was not supposed to do anything. And this is why I was chosen, 9 years ago, last August, I spoke at the 12th annual conference of Inclusion International, and I opened up with those remarks. Yves, can you read them, please?
-
Yves Lachapelle
Sure. We are so ruled by what people tell us we must be, that we have forgotten who we are. I was told I was mentally handicapped and intellectual challenged. I have been labelled everything that I can think of in my life, but what I forgot is that I am Paul Young.
-
Paul Young
Thank you, Yves. I just was reminded of something, and thank you Andre. Andre has been supporting me to put my presentations together, because, this doesn't just happen, just because I'm dressed up in a nice suit. It happens because people support me in how to understand, what to talk about and what to do, because I don't write very well or read very well.
So, what we don't want to happen here in low to mid-income countries is what happened in North America. We've got lots of programmes, we've got huge group homes, big institutions, we're so programmed that we don't know what we're doing. We have people who couldn't come to help sign cheques when I worked for People First in Nova Scotia. They said they couldn't come sign my cheque because they had to do their wash on Tuesday morning. They couldn't wait until Wednesday or Tuesday afternoon, the programme said that we have to do it now.
And what I'm getting at is that we don't need big programmes. We need individual help, we need building of relationships. It won't cost as much as it does in Canada now. In Canada right now, there was an opportunity a couple of years ago to change all that, and all they told the government of Canada was that they wanted more of the same. More group homes, more large things, and they missed the boat. It doesn't have to cost a lot. It doesn't have to cost a lot at all.
Now, I showed this group picture, because this was taken when I received my honorary diploma from the Nova Scotia Community College, a year ago June. And I show this because these people were not there because they studied my Atlas and studied that I was retarded. They're there because they have an interest in me, they have caring. Walter is there on the far left, because he trained me, he believed in me. He was a radio technician, he knew what I believed in, and he knew music like I did. And there's other people who are there, a couple of them are instructors in there, and they saw my potential as an instructor in community colleges. They're there because they believed in what my talents are, and what my skills are to give to society and the community.
Now, the late Marcia Forrest came up with this diagram, and it's an inclusion diagram. And one day I'm going to get a new one, because I believe the people with my history don't have this. In the centre, Yves, can you read this?
-
Yves Lachapelle
Yes. Intimate relationships, just a few people. Then close friends and family, church group, work group organization. And then you have, paid to be in your life, doctors, lawyers and counsellors.
-
Paul Young
Yes. Anyway, I believe that for people with my history, it's the opposite way. That the professionals and the caregivers are in the centre, and that the loved ones and the intimate people are way the heck out on the edge. And I want to change that. And the only way we can do that is to stop labelling. And someone just said, don't worry, we'll change we'll get rid of the “r” word. Well, it can't come soon enough for me.
Now, I don't stand here as a proud Canadian, because I'm disappointed in our society, because the Canadian government doesn't have a strategy to bring relationships and to bring people forward with their talents. They still have the promotion of the disability. They want inclusion, but operate big large institutions. They recognize the Convention on Disability from the UN, but they have not ratified and they won't ratify. And one of the reasons why, is that we have ten other governments in Canada, and if the ten other governments, provincial governments in Canada won't accept it, the Canadian government won't accept it. Back to the cocoon for a second.
This is what prevented me, and this is what prevents other people with my history, from becoming full citizens, not only of their country, but of the world. And to give to the world.
Now in People First, we have a vision. And the way forward for me is this vision. This is a mountain top, a mountain top of freedom that we came up with as a leader, instructing leaders of People First what we're talking about. And People First is a self-advocacy group who believes that we're people before we're our labels. And there's a road, and you think of the Atlas-ID. Mostly, when I think of an Atlas, it describes a road or a map, a way. And this is the way. We're down here with our heart, and everybody loving us and everybody protecting us, and the barriers are the disability, the attitudes and all the other things that prevent us from climbing up the mountain. I was lucky, I got to the mountain top. I have seen what can happen. I have been there. I have travelled. I am travelling. I have friends. I am allowed to associate. Other people don't have that. People who live in group homes, who live in shelter workshops, who are controlled by the services that are supposed to support them, will never have this.
And it's up the WHO to take a lead, to do away with these kinds of things and to promote individuality, to promote a person first and citizenship, to contribute to society, to give to their countries, to give to the world, and not be wasted away in forty years of training. Lawyers and doctors take five, six, seven, eight years to be trained. A person with a developmental disability takes 40 years to be trained. One of my friends who was in that first picture with me in the establishment of the shelter workshop is still doing what I did with him 40 years ago. There's something wrong with this, because he can do more than what people are saying he can, and I absolutely believe that.
Now, Yves, can you read this please?
-
Yves Lachapelle
Yes. In our African language, we say that a person is a person through other persons. I would not know how to be a human at all, except that I learned this through other human beings. We are made for a delicate network of relationships of interdependence. We are meant to compliment each other. All kinds of things go horribly wrong when we break that fundamental law of our being. Desmond Tutu.
-
Paul Young
I learned from other people. I didn't learn from my medical condition or my disability. I learned from Walter and Jay. I learned from newscasters. I learned from people who are out in the world. I never learned a thing except that I couldn't do something in the cocoon of impossibility. And here I am today. What's the difference between the little client and what I call the so-called professional? Because as I said the other day, when I become a professional, I'm part of the problem. Now what is the difference?
You think about that.
I think that the difference is that people saw me, and not my disability, and that's why I developed into, or transitioned into, the person I am today. Because Walter Purdy told me, the technician that trained me, that I was not that person. I carried my head between my shoulders, I wouldn't look people in the eye. One evening as he was training me as an audio technician, he put a book on my head and made me walk across the control room floor, because I wouldn't look up. Well, today I'm looking up. Others need to look up. The attitude of the cocoon of impossibility is demeaning, it puts you into a very doubtful situation. It was mentioned about psychology or psychiatry. When you're depressed, you don't believe in yourself. And the resources and the focus on disability do not help anyone become mentally fit to face the world that we live in.
And with that, I thank the WHO for giving me this opportunity to speak to you and tell you about my life experience, and say that it's fine to have me here and I've been successful. And I don't want to be the only story, I don't want to hear that I'm the luckiest guy here, I want more people, regardless of their development, to be recognized as persons, and live in the world where everybody else is.
Thank you very much.
-
Yves Lachapelle
After hearing you and talking with my new friends David and Joel this week, I would like to take a few seconds and share with you a comment and come with a proposal.
Throughout the week, and just like many of you, I did feel uncomfortable with the MR words, not only on that banner, but deep within. Moreover, I am uncomfortable with the word disabilities in the plural form. By using the plural form, we still put the focus or emphasis on the persons. I believe there are no such things as intellectual disabilities, but a general condition describing a person's needs, strengths and challenges. We should name intellectual disability, in the singular form.
By doing so, the focus would be put, not on the person, but on the condition. No more labelling of the person, but the specific condition that best fits their needs. This is an example of the debates, thinking, discussions that we are undergoing at the American Association on Intellectual and Developmental Disabilities (AAIDD) terminology and classification committee. Maybe it is time for all of us to have an international terminology and classification committee, with representatives of the world's leading authorities on this matter. Would there be any comments or questions briefly that we would like to ask our speaker?
Thank you very much.
Closing remarks
-
Dr. Gaston Harnois
Brave ladies and gentlemen, it is nearly 6:00. It is my duty and honour to have the last word at this meeting and I propose to be rather brief. My colleague, Dr. Chakrabhand is unable to be with me on the stage tonight, therefore I will attempt to fulfill his role as well.
Avant d'aller plus loin, j'aimerais dire quelques mots dans ma langue maternelle au sujet de tous mes collègues qui sont ici et qui ont participés d'une façon très active à la rédaction de l'Atlas en Déficiences Intellectuelles. Nous avons fait cet Atlas largement en français, mais nous avons dû travailler dans la langue anglaise, évidemment la langue internationale, qui n'est pas nécessairement la notre. Donc si on a fait des erreurs d'interprétation, on s'en excuse, mais je pense qu'on s'en est tiré relativement bien.
I think it would have been very much more appropriate to ask Trevor Parmenter to say the closing remarks. In fact, he gave it all to us this morning in his masterful presentation. I would like to offer just a few personal reactions to the three days event rather than attempt to summarize what took place. You will easily understand that this would be an impossible task. I myself have two hearing aids in my ears, and during the past few days I have suffered a little bit because I could not hear everything that was being said. To complicate matters, things are worse when it is a woman that speaking. But c'est la vie. Nonetheless, I very much enjoyed of course the three days. I have five points that impressed me the most, and I would just like to say a few personal comments about each of them.
First, about conceptual issues, I think that we had rich exchanges throughout the three days that have contributed in a way, and advanced probably our conceptualization about intellectual disability, and I think that this is good. I nonetheless ascribe to the ideas presented by Trevor this morning, and by Professor Carulla, about the need to focus on adaptive and social competence, and I would say literally on empowerment as Paul has just proven to us, rather than on IQ as part of a very important part of the conceptual issue.
I also note with great pleasure that, I don't know whether we would call it conceptual but at least nomenclature, that there seems to be quite a wide agreement about replacing the term mental retardation with that of intellectual disability. And I would hope that by the time that the next international conference comes about, we hear it as a conference on intellectual disability without necessarily having to put the dash and include mental retardation.
My second point is human rights. We have heard a lot about human rights and it is of course the fact that the persons with intellectual disability are hardly there and after hearing Paul, human rights, remains and must remain the raison d’être of all of our efforts. This is probably easier said than done, but it remains very much true. I think that notwithstanding the usefulness of international declarations like the UN, like our own Montreal Declaration and so on, the true measure of the respect of the rights of persons with disability is, as we heard, in the cultural and in the human context. I take that to mean in the day to day activities of the individual himself or herself. The impact on the quality of life of these individuals is really the true test to go about, and one of the things that we should keep wondering about is if we are really asking them what they think. Very often, we professionals have a tendency to pretend that we know what they think, but I think that there is nothing that will replace asking him or her “What is it that you feel your needs are?” And they will tell us straight in the face. It is very good. And there were several instruments that were presented during the poster session that were helpful in that context, and we are very grateful to those who presented them and brought them forward.
As part of the human rights, I'd like to include the issue of stigmatization. We've heard from Paul, again, and during the meeting, of the obligation to label, and of the numerous dangers in labelling persons. I sincerely think that we will have to continue to reflect on that.
About stigmatization, I would like to share with you an event that impressed me very much. About 10 years ago, I was doing an enquiry in Montréal, and there was a chain of work that was producing book bindings, there was a young lady with an intellectual disability that was working there. I used to always ask the same question, so I asked her “Do you have any problems in your work?”, and she said “Yes, I have a problem, doctor.” And her answer amazed me immensely. She said “I'm paid too much.” I could hardly believe my ears , so she had completely internalized the stigma that much of society had against her condition, and she was convinced that she was not worthy of being paid 11 dollars an hour for the very good job that she was doing. So I felt that there is really something wrong in a society where you find that as a result.
Another aspect of rights is, as we heard this afternoon and yesterday, the rights to adequate health services. Of course, I fully subscribe to that, but I would like to say just a word about the right to access to work. In my estimation, the best rehabilitation tool that's been invented is to give someone a paid job. I think that if you can do that, it goes a very long way to help every facet of human functioning, and yet we heard that 70% of persons with intellectual disability are unemployed. My suspicion is that it's even higher than that. And yet we know that in the workplace, our colleagues with disabilities are fantastic employees. The problem is how we get their foot into the door. And so we have to work considerably more on that aspect.
My third point has to do with organizational issues, organization of services. Well, I think we all agree that they have to be in the community, I think we should have a new model, which I would call, in the future, the Young Model, that favours the virtues of independent living, like Paul was telling us earlier. But, at least, not in institutions, and yet, we heard that asylum-type structures still exist in 50% of the countries, that are in the Atlas-ID. Well, this is a worrying situation, because more than likely it is the people the most affected by intellectual disability that find themselves in institutions. And, those that I have seen, as I mentioned earlier in the meeting, the needs of the intellectual disability portion, they're absolutely not taken into account in an asylum-like structure and programme. So we should pay quick attention to that and make sure that this is not the solution, and that we put these people in the communities as quickly as possible.
There is also unanimous concern over the lack of well identified accountable authority at all levels of government, including at the World Health Organization. I heard, very specifically, a wish that the administrative and the organizational structures of these levels adapt themselves to the reality of persons with intellectual disability, rather than the other way around.
We also heard with pleasure, of the essential role played by NGOs, even though most of them very often operate under extremely difficult financial circumstances. We should be cautious in considering them essential partners if we don't allow them to have the support that they need. And talking about partnerships, we should make the obligation to consult NGOs as rule rather than an exception.
We heard about several focuses on helping the helpers, and I think that we should do considerably more than we are doing. And we should, as we heard, worry about that fact that many of these helpers are aging very quickly.
This reminded me of a phenomenal programme that was conducted in Santa Lucia under the aegis of Professor Carulla who is with us. It had to do with a visionary man who decided that he would do something for people with disabilities. He created a factory where they were building very high quality furniture. He created an industry where he was employing around 75 people and probably half of them had intellectual disability problems. He also built a home, and he said to me, “When these people are in the factory, they are my employees but when they go home in the evening, they are my boss.”
But that was only part of his vision. He was also building a special unit for retired disabled employees, who worked in his factory for 10 or 15 years. He said, “They are getting aged and they will not have support, so I am building a retirement home right next to the factory that will lodge and look after the living needs of 45 people.” I had never seen that in my whole life and I was very impressed by it.
My fourth point is the Atlas itself. I think it is an important step that broadly describes what exists in the world today. It appears to be very well received. Ruth Luckasson from New Mexico told me that we will know the true impact of the Atlas only in a few years time. She feels that time will be needed to really measure its impact, but she also feels that it will definitely be positive.
The fact that it is an official WHO document, as the Director of the WHO Collaborating Centre, I interpret it to mean that the World Health Organization will give a higher priority to this important component of its mandate. And that it will translate into advocacy activities, into country recommendations, and so on and that from today, we could hope there will be more activities at the WHO headquarters in Geneva, and also at the regional levels.
We have heard today, regional maps, and regional plans of actions, and I think that this is really one of the outcomes of this conference. When we were planning the meeting, we had our qualms about the regional maps and the regional meetings. Well, they ended up being of a much higher quality than we expected, and we are very grateful to all of you for that. We also heard through the Atlas of the importance of research. I think we have to take all efforts to improve several facets of the intellectual disability world that needs to be researched, including of course the need for epidemiological data, which are very much in need, and the fact that getting funding for research of intellectual disability remains an issue.
My last and fifth point is what I wrote as going forward. I would just like to quote two persons who intervened, because I think that they said it all. Our colleague from the Eastern Mediterranean who said that we need a new culture where human rights are in the forefront and where the approach is inclusive. That was beautifully said. And this afternoon, Dr. Panpimol Lotrakul who is here, who is Director of the Rajanukul Institute, said that we have to adapt the models to local needs, and in her words, the following words were said “dignity, inclusive, barrier-free, cooperation, including international cooperation, and rights based”. I will finish by quoting three of the words which Paul had in his presentation, to which I suspect he attributes a goodly portion of his capacity today , opportunity, support and valued citizen.
So with these words, I thank you all for having lasted so long, and for having been here in the first place. I found it a very enriching meeting, and I think that what I would like to refer to as the international ID community is great. It is full of very interesting, very dedicated, very motivated people, and I hope some of you will undertake to have a third international conference somewhere. We have organized two conferences, and we are not promising that we will organize a third one, as it is quite a lot of work.
With this I would like to wish you a good evening, and a safe and healthy return to your home, wherever that is. And for those of you who have not had a chance to enjoy Bangkok, maybe you should take another day or two to do just that. That's what my wife and I intend to do. And I wish you a very sincere and good “Bon voyage de retour”. Thank you.