Convenor: Tim Shriver, Special Olympics International
- Loretta Claiborne, Special Olympics International
- Matthew Williams, Special Olympics International
- Nureddin Amro, Siraj al-Quds School
- Shantha Rau Barriga, Disability Rights Program, Human Rights Watch
SHRIVER: My name’s Tim Shriver. I want to start by saying that in 34 years of professional life I have never attended a professional gathering that has this level of representation from people with intellectual differences. And, and that goes for a lot of gatherings, except for those that are explicitly organized for that purpose. So this is the most inclusive gathering of people with intellectual differences in my lifetime. And I want to thank Kim [Samuel], and Synergos, and the team for being so open to having the presence of this kind of diversity in the room.
There’s all kinds of diversity, not one is better than the other, but this one is almost never in the room. And it is here so I just want to recognize that, and applaud, and be grateful for it. We’re coming at the end of lots of panels and discussions so we had our pre-brief and here’s what we decided that I would say: each of these four people are experts, leaders, and global figures. Each of them has a story that includes experiences of profound isolation, incredible grit, and courage, and determination, applying that grit to making a difference, and finding themselves included and on a team.
And none of them are going to tell those stories, so you just got…
…you just got the summary of the line of change that each of them has experienced.
We decided not because their stories aren’t important but because we felt like we’re maybe at a pivot point in this meeting where we want to shift a little bit from narrative to solution, a little bit from personal to collective, a little bit from one’s own experience to the implications for a collective action. And so we’ve challenged ourselves just recently over lunch to think how could we run this panel in a way that would do that as opposed to telling necessarily just our stories.
So, Loretta, again, I won’t introduce everybody except to say that there’s something distinctive about each person here.
Matthew is the first person in history to have an intellectual challenge and commit himself to being a professional personal trainer for people with intellectual differences. To our knowledge no such human being exists anywhere on the planet. So that’s one of his distinctive qualities.
Shantha is the first person to bring the idea of disability right to the field of human rights, Human Rights Watch, and to bring that as a brand new position within the global human rights community that the disability rights community belongs there now and forever, the first person to do that. Loretta, as you may have heard, grew up one of many siblings, a person with an intellectual difference and yet is the first person in her family ever to own a home, and to own her own home.
And Nureddin is the first person in, as he would say, Palestinian Jerusalem to create an inclusive school.
So you have here people who have extraordinary distinctions in powerful, and personal, and meaningful ways that they’ll share with you. The challenge that we’ve given to them and that we’re going to give to you and your tables is this: Loretta said there was a time when Martin Luther King gave his “I Have a Dream” speech and the world pivoted… the world changed.
So when we get to the breakouts we’re going to ask you at your tables to shape your own “I Have a Dream” speeches and to focus not just on the destination but on what you would do to get there. And so we’ve asked, I’m going to ask our panel to, to speak briefly, each of them, and to echo the words of Dr. King. Each of them refuses to believe that the bank of justice is bankrupt. Each of them believes in the fierce urgency of now. Each of them knows that we cannot walk alone. Each of them is convinced that we will not wallow in the valley of despair. And each of them has a dream. With that I will start with Nureddin.
AMRO: Okay, thank you.
AMRO: No, that’s okay.
SHRIVER: I just changed it. Are you okay with starting? We had a batting order and I’ve just messed it up. Are you okay with starting, Nureddin, or would you like Matthew to start?
AMRO: No problem.
From isolation to social inclusion. For me, personally, I lived a life of isolation for many years.
And then I started to think about how to overcome that isolation and get connected to society, to people, and to community. And I started from education as I believe that education is powerful, and good platform, and that can connect me to people, and that can help many others like me to be connected to community members and to their peers in the society.
So education can be used as a place as a pluralistic environment that bring together people with different disabilities, with different problems. An environments that fosters the sense of understanding, fosters the sense of mutual respect, the sense of reciprocity. And through education we could generate new people with new thoughts. And education can have a very positive impact on the lives of special needs and isolated, as an, as isolated persons who suffered a lot from that condition that they used to live in because it will have as well a positive impact on their families, and the perspectives of people in the community.
So through education you could generate new generations, new people with new thoughts, and ideas, and attitudes. And you could change the negative perspective of those people towards people with disabilities in general.
And of course such a strategy should be also accompanied or side by side with changing policy because if you launch such a project, or if you launch such a strategy in a community and the strategy encounters some policy problems, or some policy rules that prevent it from being implemented, then it would not be successful in the way that you need it.
So there should be concentration on different dimension that will bring about the solution to such a problem, including the policy change, the educational strategies, the perspective of people and that could be also achieved through awareness campaigns in the community to change the way people deal with or look tothose people who are isolated, or who, who are eliminated, or those people whose role is simply eliminated and they are excluded from life.
As we said here today and yesterday, isolation has many dangerous outcomes and many negative impacts on the lives of people in the community as this could bring about, let’s say, or bring about lack of trust between people and conflict at all levels in the community, and it hinders the development of communities, and the social advancement.
So each one of us, each one of you, and everybody in the community can be an ambassador for change, for getting away and releasing people from that isolation, and tell people to be connected with each other, and too, you could think about, you could think about the potential, the great potential and the great positive values that those isolated persons have and possess and that would contribute to the, to the community development if they are given the opportunity to do that.
SHRIVER: Thank you, Nureddin. Thank you.
So education, public awareness, policy change, and attitude change—a good mandate. Just keep in mind, you are going to get your time — I’m talking to the audience now –and you’re going to be asked to report out so be thinking on your own “I Have a Dream” speeches. Let’s go next to Matthew, shall we?
WILLIAMS: My dream is for everyone, not just people with disabilities, but everyone in society to feel valued and to know that different doesn’t have to be a negative thing. It can be a positive thing, an advantage for us to move forward in the world.
I think in society we’re told we have to act a certain way, talk a certain way, “Do this, do that, you can’t do it that way, that’s not correct.” I think we gotta get away from that and look at being different as a skill. I think if we were all the same life would be boring. You know, it’s unique and in this room, you know, I heard amazing stories from people from South Africa, from everywhere around the world and everyone’s different and that is so exciting. So I think we gotta embrace that as a society and look how can we use that to move forward and make this world a better place.
I think how we gotta get people to realize that it is okay to be different is we gotta get it in a curriculum setting early in education. I don’t think we should be waiting ’til people are in their 20s, 30s and, and then finding out, you know, about these different problems and people with disabilities and their challenges. I think if we can get it early in the school system I think it will be a positive change. And I think we also have got to look at team involvement.
And I don’t mean team just from being on a sports team. I think, you know, in school you can be on a chess team, a debate team. There’s so many ways you can be involved as a team. And I think if we all bound together as an inclusive team integrating people both with disabilities and people without I think we can really create a positive change. And my favorite thing when I hear the word “team” if we do it together everyone will achieve more.
SHRIVER: Well done.
Thank you, Matthew. Shantha, are you ready?
BARRIGA: I’m regretting offering to go after Matthew now, right [CHUCKLES]. Really.
Well, thank you, Tim, for your very kind introduction. I must say that I’m very fortunate to be the first person to work on disability rights. But it was really the result of a lot of advocates, including some people in the room, and people with disabilities like those, like Matthew, who really pushed our organization, Human Rights Watch, to, to see this issue as a, an important human rights issue that we need to be really addressing.
So I want to give credit to that. And I wanted to raise two points and two strategies. Tim challenged us at lunch to, — and we all had to rewrite our little presentations — to think about how, how let’s take the next step forward. How would we move from the, these feelings of isolation toward having a greater sense of community and connectedness? And I was thinking about this and had sort of two thoughts to share.
One is I think the idea of partnerships and how, you know, this, even just listening to the Gogo Grannies about the partnership between the government, the communities, the families, the children, and, and how that is so critical to engaging and connecting.
And I wanted to share an example from our work in Croatia. So people with both intellectual and mental disabilities, as in many countries, are often locked up in institutions, isolated and segregated from their communities, from their families, often times since birth. And so what’s interesting in Croatia is they decided actually to really step up their efforts and begin moving people out of these institutions and into their own apartments in the community as in other countries like in the United States, and in Canada, and even other countries around the world.
And so we’ve been following this process in Croatia and what it’s meant to the people who’ve been through this process, and, you know, I’m honored to be able to share their voices here is, is freedom. One woman we met who was, whose name was Jeletsa, she’s 58 years old and she lived in an institution for the last 17 years. And she told us, “I felt like I was in prison, like I was being punished in some way. And now I regained by dignity. I feel like a human being.”
That’s what I think the, the partnership in Croatia between the government and communities is really moving people. Matthew and I had a really lovely discussion during our dialogue walk today about the fact that, you know, to his point that everyone is human and they need to be, they need to feel as if they’re part of our human diversity.
The other point I wanted to make was about listening and how that is a strategy. And it’s something that I, we’ve tried to [do]. I’ve learned a lot, including from Diane who’s here from Inclusion International, about the importance of listening and consulting with the populations whom you want to benefit, whom you’re working with, and how that consultation and that listening helps develop programs, and policies, and systems that are tailored to what they need and what they want.
And I think in the case of people with mental or intellectual disabilities there’s often this sense of, “We know what you want. We know what’s best for you.” And so whether that’s family members, or whether that’s schools, or whether that’s governments that are often making those decisions for them, or doctors, but instead by engaging and consulting with people then it would go a long way in addressing the isolation that they experience and bringing them more into the community.
CLAIBORNE: Thank you.
Tim, I have to say how do you know where you’re going if you don’t know where you come from?
If you listen to the people today you heard about the indigenous people and their history. Well, I’m going to take you a little bit back on my history. My mother, when she had us I could tell my mother was very depressed but she always, she had this big heart and yes, she was a big woman. We followed under her.
But I can remember the time when my mother passed away. She was very depressed. And you know what happens when you get depressed and you feel isolated. It’s not good because from depression and isolation comes the danger of other consequences. And then when she had me she knew it was going to be a long road. And of course I was isolated. I didn’t know what depression meant as a child. But just seeing my life as I went through did I have a dream? Did I have anything to look forward to?
And if you looked at society I was supposed to be one of those people who supposed to be institutionalized. But as time went by my mother’s dream was for her daughter to graduate from high school and not just handed a piece of paper and say, “She’s attended.” I completed my studies just like my other sisters and brothers. That was my mother’s dream.
But I had dreams, too. I wanted to give back. Could I give back as a person with intellectual disability because society viewed us as nobodies, not even supposed to live here? Would I have that opportunity? I had things against me — color of my skin, being a woman, being a woman with intellectual disability were all no-no’s.
That wasn’t going to happen until I met some people along the way, people outside of my community. At the time our country was in the strife of blacks and whites not even getting along. It was a little white lady that took me and showed me how to knit… on two pencils.
There was another woman that showed me how to count money. It was a man.
And then the third woman became an advocate for me and she taught me how to go forward and looked at what isolated me and what depressed me. And what the most I got from her was no money involved. It wasn’t the way I lived. It wasn’t because I was poor, but what I got from her when I seen her actions that she was able to give back, and I admired how she was able to go to the community, even though it wasn’t her community, and make meals to help her church.
And I would look and say, “Miss Janet, can I help do that?” It was that person who made a difference. And now when I look at myself my dream is becoming a reality. I can give back and I volunteer in my community.
That breaks my isolation. As the days get short people call me all the time, “Would you speak at my school?” I don’t get paid for 90% of the schools that I speak at. But if I can change the life and the mind of one child that as how he or she thinks about somebody else… my dream will become a reality. Volunteering, giving back, you can start with yourself. Yes, a lot of people with intellectual disability are told what they can’t do. But if you have your persons and you get out there and show them or put them in the community people get to know you — that’s a good feeling and that breaks down the isolation, and that breaks down the depression and what it causes. I know this whole session was based on isolation, and stigma, and poverty. But everyone has something to give.
And when you’re able to give to your community starting with yourself, or to show somebody as a child or a person with intellectual disability that they are valued then your dream becomes a reality. Thank you.