Inclusion Matters Because Community Matters, with Diane Richler

Speaker 1 (00:05):
Welcome to The Good Things In Life podcast, committed to bringing world-class ideas, conversations, voices, and thought leaders to parents and educators. So kids with intellectual disabilities will have the support they need to build positive inclusive lives at the heart of community. Here’s your host sister, mom, researcher, writer, speaker, and perpetually curious, Genia Stephen.

Genia (00:38):
Diane Richler. Thank you so much for joining me on The Good Things In Life podcast today. I know that you are incredibly busy and you have tremendous responsibilities and well really all over the place. So I’m very, very grateful for your time and that you’ve, you’ve carved out, um, the opportunity to, to be with me today. Thank you so much.

Diane (00:59):
It’s a pleasure. And I think this also gives me an opportunity for reflection, which is always important.

Genia (01:05):
It is, it is. I wonder, Diane, if you could begin by just introducing yourself and talking about how you were involved with people with disabilities and their families. I know it’s a, it’s a rich, long story, really?

Diane (01:19):
Uh, well, mostly, uh, it’s definitely long, um, because, um, I really took my first job in, um, supporting people with intellectual disabilities in their families in, uh, the fall of 1971. So it’s been 50 years. And, um, you know, when I reflect back, I decided to look for work because after I completed a Bachelor’s Degree in Psychology, um, I really didn’t know what I wanted to do. Um, I knew that clinical work, uh, one-to-one work wasn’t for me because, um, I didn’t think that I could separate myself and move from one situation to another. Um, but in, I guess, growing up, um, being born right after the second world war being Jewish, I was very aware of the impact of discrimination. And of course, during the holocaust, uh, the first people to have, uh, been killed by the Nazis were people with disabilities and then people, um, uh, and then, and then the Jews.

Diane (02:39):
So I was involved in human rights organizations and, um, then studied psychology to show how long ago it was. My, uh, one course that touched on disability was called Abnormal Psychology. And, uh, we learned how, um, people with different sexual orientations, people with disabilities and, uh, prisoners were all deviants and different. And, uh, there was somehow in my brain, something that, uh, some cognitive dissonance that human rights people get discriminated against. These people are different and we have to think about them differently. So, um, there’s a lot of serendipity involved because, um, we had just moved to Toronto for my husband to go to law school. And, uh, we were living on our campus. There was a job advertised at a place and excuse my language, but this was the language, the time at the National Institute On Mental Retardation, which was sponsored by the Canadian Association for The Mentally Retarded, now Inclusion Canada.

Diane (03:56):
Um, and the job was to be a research assistant to Dr. Wolf Wolfensberger and a Wolf had come to Canada for two years as a visiting scholar. Uh, he had been working in Omaha, Nebraska, where they had developed, um, a really comprehensive system of supports for people with intellectual disability disabilities in the community. The objective was to get people out of institutions and to say that there was no more need for institutions. And, uh, so I mean, I was hired because there was no one else qualified for the job. There really was not a field of community supports in Canada yet. Um, families had the choice of sending their child to an institution or just coping on their own. And, you know, the first families that I started to work with were often families, mostly mothers whose children were living in institutions and who had landed there because the mother’s health was, I had just broken down because of caring for a child with no support.

Diane (05:05):
Um, and so, um, and then, and they were committed to the fact that other families shouldn’t go through the same thing. And there were the families who were trying to prevent that. So, you know, when, when I think back I was, um, 21 years old. I had very long, straight hair. I had wire rim and blue glasses, and I walked into rooms of psychiatrists who were at that time running the, um, institutions and the services for people with intellectual disabilities in the province of Ontario at the time. And I said, everything you’re doing is wrong. And they looked at me and said, you know, like, what do you know, little girl, um, and then I would go home and cry and I’d go and do it again. But, you know, I was, it just, it just made sense. I mean, it just made intuitive sense that, um, people, regardless of their disabilities should be able to live with their families and just be part of the regular community.

Diane (06:16):
And Wolf had been influenced by work in Scandinavia which at that time was called normalization and that’s, um, somewhat frightened now. But, um, you know, the idea was that people should be able to live regular ordinary lives. And so that, wasn’t a big leap for me to, to think that that made sense. And, um, so I worked with Wolf for two years, and then I stayed with the association, um, initially running the programs that supported our, uh, local and provincial associations across the country, then heading, um, the Institute, which became the ROAR Institute. And now as [inaudible] and then as Executive Vice President of what is now Inclusion Canada. And in the early seventies, Mondays, I guess 73, 74 or the first attempts were being made in Toronto to include kids with intellectual disabilities and including multiple disabilities in regular classes. And I was visiting those schools. And then I guess it continued cause my first son was born in 1975.

Diane (07:36):
So I was starting to visit and learn more about including kids in regular education as my kids were growing up. And what struck me was that the classes that I was visiting, were the kinds of classes that I wanted my kids to be in. It didn’t matter that they had been designed that way in order to be able to include kids with disabilities. Um, but they were fun. Everybody looked happy, everybody looked busy, they were noisy. Um, but desks weren’t arranged in rows. Um, the teachers were there laughing, the teachers were hugging the kids, you know, they were just wonderful places. And so my commitment to inclusive education, which is where I’ve been spending most of my time in the last few years really started a long time ago, um, without a lot of, um, without a lot to see, without a lot to develop, but just with a strong belief.

Diane (08:40):
And I guess maybe one message when I reflect back on, on my career is that holding onto beliefs of what could be possible, even if I had no idea how to make it possible, um, was worth doing. And that the, the search was to find people who could help make it possible. So that was, um, you know, that was an important step in my, in my work at, um, Inclusion Canada, Um, we were part of an international network, uh, of similar associations. And I was invited to a meeting of, um, the, The Parent Organizations, it from the Americas that was taking place in Chile in 1990. I think I remember that actually. And, um, I was, I had no interest in going, I didn’t speak Spanish. I, Canada was not yet a member of the organization of American States. Everything that we did internationally focused on Europe, it was either the US or Europe.

Diane (09:59):
And I really knew very little about the Latin America, what I had done in my grade for a project on Peru. So, um, but anyway, convince the government of Canada to pay for me to go. And I couldn’t say no to that. And so I went and I met , um, parents from Argentina, from Chile, from Nicaragua, from Guatemala. Those countries had all recently, um, remove their dictators and we’re transforming to, um, democracies. And in Canada, we had just adopted the charter of rights and freedom where disability was of course included as yeah, uh, protected grounds against discrimination. And when I listened to these other parents talking, I realized that they were really like, they were poor countries. They weren’t thinking about services, but they were thinking about where their sons and daughters fit into the democratization of their countries. You know, where did they fit in as citizens?

Diane (11:13):
Um, how could they be protected from discrimination? And that really clicked a switch for me to start thinking, not so much about what’s the range of services and supports that you need in a community. And just how do you changed from having an institution to, how do you have, um, uh, at that time we were thinking, you know, group homes and sheltered workshops, those were the ideals. How do you switch from that to thinking about what it means for someone to be a citizen of their country, to be able to make their own decisions about their future. Um, and to just be part of everything that was regular, not to be part of anything that was separate and special. And the more I got to know people in Latin America, the more, um, first of all, that, that frame shaped my own thinking and the more I became interested in.

Diane (12:13):
Well, what were the pressures that were causing the current system to exist? You know, when I started out, uh, the psychiatrist in white coats were the bad guys. But I started to realize that in fact, what we were fighting against in order to promote different kinds of lives in the community, was much bigger than that. That in fact policies were being shaped by global institutions. I mean, I’d heard of the World Bank before, but I never really considered the place it had in people’s lives, but in most of the world, uh, you know, at that time, the World Bank decided to make educating girls a priority. So all of their resources were going towards educating girls. And when we went to see people at the World Bank and said, when you support countries, you have to make sure they include people with disabilities. They said, well, after, you know, we’ll do that later.

Diane (13:17):
First, first we have to get the regular kids into school and then, then we’ll come to that. So I started to, to see how the organizations like the World Bank, um, the UN agencies, UNESCO, UNICEF, um, we’re, we’re really having a major impact. And even though Canada is not a recipient of those, um, of money from those institutions, we sit on their boards, we control what they do. And in being part of those processes, we were both imposing this view on other countries, but we were so being influenced it because our Minister of Finance would go to a meeting at the World Bank and hear that this is what you’re supposed to do and would come home and think, gee, we’re doing it great. So I started to really be much more interested in that. And, um, you know, one of the lessons I learned from one of my predecessors was if you’re working for a voluntary board, you should always quit before they decided to, to fire you.

Diane (14:24):
And, um, at that good point, I think I’d been executive vice president of, uh, Inclusion Canada for 14 years, years. I loved my job, but clearly I was much more or drawn to the international work at that point. It just seemed to be much more right for change. And, and I felt that I sort of given all the fresh ideas I had at the Canadian level. So I took a chance and, um, I ran for the Presidency of Inclusion International, which is the Global Federation to which Inclusion Canada belongs. So anyone listening to this podcast in Canada, if you’re a member of a local association for community living, whatever it’s called now, um, you’re part of Inclusion Canada, and you’re part of Inclusion International. Yeah. And so I had, um, two years as president elect and then eight years as president. Um, and the timing was very fortuitous for me in terms of a learning opportunity, because it was when the negotiation started for the convention on the rights of persons with disabilities.

Diane (15:39):
And, um, when I first heard that the, um, convention was, was being proposed, I was very skeptical. I was skeptical because I was worried about where intellectual disability would fit into a treaty, protecting the rights of persons with disabilities. Because I knew that most of the other organizations of people with disabilities had very different perspectives on the changes that needed to be made. For many people with disabilities, the main challenge is access and reducing physical and sensory barriers. Um, for us, the issue is systems change. Um, it’s not, no. I went to my first meeting with the leaders of other, the other big disability organizations. And they want to know, well, what’s your list of what the convention has to have for people with intellectual disabilities. We know for people with physical disabilities, we need to have ramps. We need to have accessible transportation. We need to have accessible toilets.

Diane (16:55):
We need to have accessible schools, um, for people, uh, who are blind, we need to have access to braille. We need to have, you know, audio on, um, on descriptions, a video for people who were deaf, we need to have access to, to sign. For us, we couldn’t come up with a list. We didn’t want to come up with a list. What we wanted was for systems to not discriminate against people with intellectual disabilities and to be set up in ways that would make it possible for them to participate. And, um, my first meeting actually was extremely unpleasant. Yeah. Because I was called into a meeting of some of the other leaders, and I was told two things. First of all, the name of our organization Inclusion International was offensive, because people didn’t want to be, be included. Um, and yeah, secondly, because many people, for example, in education, uh, the World Federation of The Blind, the world, uh, the sorry, the World Blind Union, The World Federation of The Deaf wanted to protect their special schools.

Diane (18:11):
So they didn’t want to be included in regular education. And secondly, I had no right to be there because I didn’t have with disability. So, um, I went home thinking, boy, it’s going to be fun to be part of this club with all of these other, these other leaders. But what happened over the six years that the convention was, um, developed was that we got to know each other. Um, you know, I would sit with the President of The World Blind Union and type while she dictated, um, the World Federation of The Deaf President would push someone in a wheelchair chair. You know, we all just learn to, to help each other. And there were, uh, Inclusion International work, very hard to bring people with intellectual disease abilities, to the process and to participate. So when the topic of education came up, we had a young woman from Lebanon speak.

Diane (19:15):
Uh, she has down syndrome and, uh, her, she, uh, speaks English. Her family speaks French at home, so she speaks some French and she speaks some Arabic. So she spoke on our behalf on Inclusive Education and talked about how, uh, she was rejected from a school, uh, because she had down syndrome. When she was the only one who, uh, that I’m aware of during the negotiations who spoken all three languages during her presentation. So, you know, we were educating people through our, through our, um, through our actions. Um, and we, we got partway, I think, I mean, I was actually quite amazed that we got, as far as we did with the convention, the things that we fought for most, um, we wanted recognition of families. And the only, um, thing that we were able to do was to get a recognition of families in the preamble, which says that families require support in order to be able to promote the rights of their family members, uh, who have a disability.

Diane (20:35):
Um, but because the, uh, the treaty was being written to give rights to people with disabilities, um, that was the most we could do. But we did get a commitment in education to, um, a, uh, that states have to provide a fully inclusive system at all levels, but it wasn’t spelled out. We got a commitment, we couldn’t get a commitment to no institution, but we got a commitment to people have the right to choose where they live and with whom. And we had a commitment to support a decision-making and to the fact that people are entitled and the state has to provide supports in order for people to be able to make their own decisions with supports. So, uh, we were successful in the main things that, that we wanted to have done. Um, so the, this is a very long introduction, but a long time,

Genia (21:36):
Diane, sorry, I just need to, I just need to pause. I, I have to go help my son for a second.

Diane (21:41):
No problem. Okay. Just let me know when you’re back. Yep.

Genia (21:49):
Sorry about that, Diane. So you were talking about, um, where you ended up, uh, or where we collectively, I guess, ended up with the convention.

Diane (22:00):
Um, I, after the convention on the Rights of Persons With Disabilities came into force, um, I had served eight years as President of inclusion International. Uh, the first person to have served two consecutive terms, and I was elected at that point to be the chair of the International Disability Alliance, which, um, is the grouping together of all of the major global disability organizations. Um, so The World Federation of The Deaf, The World Blind Union, The World Network of Users and Survivors of Psychiatry, uh, more recently Down Syndrome International and a number of regional organizations. And, um, that was another learning experience for me because, um, the main role of, uh, the International Disability Alliance or IDA is to represent the global, uh, disability movement at the global level. So with the UN and UN agencies. So our first office was in Geneva, which is where the Human Rights, um, organs of the UN are located.

Diane (23:27):
And then, um, we opened an office in New York, uh, which is where many of the development agencies are, are headquartered like UNICEF. Um, and, uh, so my work over the next, uh, three years, I guess it was, um, was really representing the global disability movement with, um, the various international agencies. And that was a personal challenge because, um, I needed to make sure that I was really representing what those groups wanted me to say. I couldn’t represent my perspective or the Inclusion International perspective, but often we were a little bit at odds, um, you know, say around inclusive education. Uh, we had some real debates with The World Network of Users and Survivors of Psychiatry over the concept of supportive decision making, um, because their members are so concerned about families, um, having control. Um, we still have major debates about education with, especially with The World Federation of The Deaf.

Diane (24:47):
Um, but my commitment during those years was to work with them and just try to come up with, um, kind of, um, joint position. And one principle that we adopted that I thought was really important was that in, in global settings, none of us would put forward positions that another group would see as harmful for them. So we would have to be careful that we were putting forward positions for people with intellectual disabilities. And that we weren’t saying, this is what people who are deaf should do, or this is what people who are blind should do. And, um, you know, that process again, um, brought me closer to some of the global agencies, uh, to learn about how they work and to try to figure out how, how to, um, lever, um, the various, uh, you know, op uh, tools, um, in order to, to change their policies.

Diane (25:56):
Um, and I have to say that there’s been a huge, huge, um, transformation in the position of the UN and its agencies in terms of promoting The Rights of Persons With Disabilities. But, um, all the global reports, uh, whether it’s The World Health Organization, World bank report on the status of prisons with disabilities, or whether it’s The Global Education monitoring report of UNESCO, they all consistently say the people who are most left out and most discriminated against are people with intellectual disabilities. And so that brings me back to the commitment that I made in the early seventies, when I first started working in this area and recognize that systems that can include people with intellectual can include anybody, right. And, you know, that’s sort of where I am today.

Genia (26:57):
If you’re unsure how effective your child’s school is at offering an implementing inclusive education, you can download a free PDF. It’s called How Inclusive Is This School? 14 questions Every Parent Should Ask. You can access it at goodthingsinlife.org/14 questions. That’s 14 questions. And if you feel like you need to build your strong foundation in inclusive education, then keep your eyes and ears open because we’ll be opening up the foundations course. The what, why and how of inclusive education on July 22nd, you can’t register yet, but it’s coming.

Genia (27:44):
And today, what is your work with Inclusion International?

Diane (27:49):
Um, a couple of years ago? Uh, well, first of all, I guess just a reminder that as in Canada, most parents organizations around the world started because kids were not admitted to school. So, often it was to start schools, um, and you know, often in informal settings and it was, it was only, um, in, uh, the seventies that in Ontario, the province of Ontario took over the schools for children with intellectual disability. So it’s a pretty recent history. And in the rest of the world, um, people haven’t made as much progress, but in most places, um, organizations have parents started because their kids couldn’t go to school. So education has always been high on the priority list. And, you know, it was certainly one of the focus areas of our concern during the negotiations of the convention. But despite the fact that we, we saw changes in policy in many places and even changes in law in many places, the reality around the world is that most kids with intellectual disabilities either don’t go to school.

Diane (29:02):
And if they do go to school, they go to a segregated school or a segregated class. And so we knew something had to change. And so as a result of that, um, inclusion international launched a, what we call The Catalyst for Inclusive Education, which I chair. And the objective is to support the members of Inclusion International, to be able to be more effective in bringing about change in their countries. So, you know, we still try to influence UNESCO. We still try to influence UNICEF. We still, uh, try to influence the donors, but our main is to try to strengthen the organizations of parents and families. Together with people with intellectual disabilities in order to, um, achieve inclusive education

Genia (29:54):
And Diane, why? I mean, I understand why I think I understand what inclusive education so important, but let’s break it down. So it’s obvious that parents who had no acts whose kids had no access to education would join together in order to, um, advocate for education for their kids, but why inclusive education?

Diane (30:20):
So I, I think it’s worth, um, remembering that when we first started talking about kids with intellectual disabilities in regular classes and regular schools, we were talking about integration and really, we were just hoping that kids would get into classes. We hadn’t yet realized that those classes need to be transformed, but let, let me start with the first one. Um, I mean, I don’t have to tell you, you’re a mother with two kids. Um, like I had three kids growing up. The worst thing is when your kids go to different schools, when you have three different parent teacher meeting days, when you have to, you know, you have to check on the snow days in which schools are closed in which schools are open. And you have to figure out what’s the transportation, if that’s needed. And you know, it’s, it’s just horrible. Um, it just makes so much sense as a family, for your kids to be in one school for them to know each other’s brothers and sisters.

Diane (31:31):
So the brothers and sisters of one kid are in the class with the brothers and sisters of the other kid. And so you meet the parents of those kids and, you know, you’re part of that school community. As soon as a child with an intellectual disability is forced to go to a different school, you break all of those community ties. The other kids in the neighborhood don’t know them. I mean, I still, I remember we had a kid. I mean, I keep saying the kid, I mean, that girl, uh, who had down syndrome, who lived on the street where I grew up and when she reached kindergarten age, she disappeared and I never saw her again. And her brothers kept going to her school. And as a kid, I don’t know if I ever asked where she was. She was a couple of years younger than me, but, you know, if, even if it hasn’t been that dramatic for all families, for children to actually leave their family home, um, just not being part of the same school community is terrible.

Diane (32:40):
And then the next thing is being part of a regular class. And, um, I remember being at a hearing in New Brunswick about whether they should revise their policy on inclusive education and a mother spoke and said, she thought that inclusive education was good for both of her kids. For her child who had an intellectual disability, because he would learn to get along with the others. And for a son who didn’t have a disability and his friends. Because she remembered when her son with a disability was born, she’d never met a person with a disability before. And she knew that her kid’s classmates would never have, would never have that experience. So, so, you know, the first move was for integration for just being there for just being able to form the relationships. But as we learned more about including kids in, in regular classes, we recognized that it wasn’t, I guess, that, that the things that would help children with intellectual disabilities learn would be good for other students too.

Diane (33:54):
Right. And I guess that brings me back to my passion for inclusive education is that I don’t think it’s just good for kids with intellectual disabilities. I think it’s just good quality education. And, you know, especially in today’s world where we don’t have to focus so much on memorization, you know, if you don’t remember what the capital of Tanzania is, you just ask your computer and you know what right away. So kids need to learn different things at school. They need to learn how to be inquisitive. They need to learn how to be problem solvers. They need to learn how to find information. They need to learn how to get along with others. I mean, that’s one of the big things that we’re finding out is that success in life, isn’t so much that you were able to get a hundred on a math test, but if you’re going to be a boss that doesn’t know how to relate to your colleagues, you’re not, you’re not going to be a success.

Diane (35:00):
So, um, and I think also that, you know, so often the special programs have focused on life skills for people with intellectual disabilities. So, I mean, someone could be learning to make an ed for 10 years to make good hospital corners. I don’t come and look at my bed. Um, you know, my hospital corners are terrible. Um, I don’t even try. So, um, but there, there became such a, like a myopic focus on gaining perfection at certain skills before you could enter the world. And the reality is that the world is ready and open for, for everybody and classes are ready and open for everybody. And, you know, I think back, I don’t know if anyone’s told this story yet, um, on your podcasts, but I remember when Becky Till who had been, um, you know, a student in, at a regular school, her family had had to opt for a, uh, Catholic school board because the public board, uh, fought, uh, against her.

Diane (36:27):
But after her graduation, the school hired her and they hired her as an English Assistant and had the young kids reading to her. And, you know, those young kids who had reading problems were happy to read to someone who never corrected them and didn’t care if it took them a long time to sound out a word. And, but they were getting to know Becky, and Becky was part of their world. So, um, I just think that, you know, that’s, that’s so important. And I also think that there’s been such an underestimation of what students who have intellectual disabilities can do in school. Um, my own god son has autism. Um, he, he says a few words, but mostly he communicates in sign. Um, but he was in a regular class from nursery, right through high school. Um, and he made friends at school. Uh, he made friends who came to his household after school and who invited him to their house.

Diane (37:46):
Um, he made friends who, um, taught him how to ski and how to water ski. Um, he made friends who asked permission of his mother to take him shopping so that they could buy him trendy clothes instead of, you know, what his mother thought was trendy. Um, those things are all important, but he also learned to read, I mean, he’s, he’s a fabulous reader. And, um, he, you know, never would have, he never would have done that if he had been in a school for kids with autism, um, his, and, you know, I, I don’t even want to think about what kind of a person he would be. Uh, I mean, he, he’s a gentle guy now with a great sense of humor and he doesn’t need to be able to speak. He can show his humor through gestures and, um, you know, he can just be who he is.

Diane (38:56):
And I think that was only possible because of being at school. And I should mention that, although he doesn’t speak a lot, he started to speak a lot more when he went to high school. Because when he was in elementary school, the kids all knew him so well that they could read his mind. Um, you know, they, they knew what he needed or what he wanted when he got to high school and had to move from class to class. And the kids didn’t know him so well, he managed to learn some key words so that he could make himself understood and, and get by in school. So, you know, that personal experience was real vindication of, of the benefits of, of being included. Hmm.

Genia (39:44):
Um, so, uh, Linda tell Becky’s mom has been a guest on the podcast if people are interested in hearing Becky’s story. Which actually really follows the timelines that you’ve been talking about from institutionalization to inclusive education and benefits, um, after, you know, the high school years, um, people can find that at goodthingsinlife.org/010. And, um, yeah, I think d d Diane, I want to move, not move, but I want to talk about, as I said to you before we started, I am ongoingly distressed by what parents are told about the benefits of segregated education. Um, very often it’s, that’s where the supports are going to be available, lower teacher, student ratios, and the access to specialized while specialists and special specialized instruction. And yet we’ve got an international organization, um, and coalitions that are focused, not on making sure that kids with intellectual disabilities have access to more special education, but access to the same, um, education that kids without disabilities access.

Genia (41:11):
And the reason for that is that it’s higher quality education. I guess it’s a little bit of a, it’s not a little bit, it’s, it’s a significant, um, misrepresentation of what kids get in special education or segregated education does to name those, you know, well, they’ll be better support and they have lower teacher student ratios. And I wonder if you could speak to, I mean, you’ve already talked a little bit about it, but the outcomes for people, you know, like why, why inclusion, as far as the, um, how segregated education and inclusive education turns out for people in the long run.

Diane (41:56):
Well, I mean, first of all, just going back to some of what I said about getting to know the people in your community, um, how do most people get jobs? Um, you know, how many people find a job through the newspaper. And how many people get a job because, um, your friend knows somebody or somebody’s parents need somebody. And whether that job is mowing a lawn or working in a store or working in a restaurant or working in a law office, or, you know, any one of a number of jobs, most of those jobs are found by personal connection and people make their connections at school. And that’s important on both sides because, you know, it’s important for the graduate who has an intellectual disability to know people and for people to be comfortable with them. Um, but it’s also important for people who are employers to not be frightened by disability. To not think that well, because that person doesn’t talk or doesn’t speak clearly, or has jerky movements or uses a wheelchair or whatever, that they’re not going to fit in.

Diane (43:26):
If you’ve been in a class and you’ve been with kids like that all your life and with different kids who have different issues, it’s really not such a big deal. Um, you know, in the same way that it is, that it is for families. Um, when we hear self advocates speak, I mean, they are of one voice, self advocates say, I hated not being able to go to school with my brothers and sisters. I hated going to the school that people called the retarded school. Um, I wanted to be in school with, with others. So, I mean, if we’re going to listen to people with intellectual disabilities, like there’s no, there’s no equivocation. They, those who were in segregated, uh, education regret, it feel that they lost a lot and don’t want that to happen to anyone, um, in the future. Um, you know, that’s not to say that having gone through a regular education provides a bed of roses.

Diane (44:42):
There are a whole new set of challenges when you enter, uh, adulthood, uh, working world life, finding jobs, isn’t always easy. But, you know, generally the fact that people have been in regular education means that they’re much more adaptable to regular situations than people who have only been surrounded by others who have intellectual disabilities, and maybe who, um, you know, who, who didn’t know how to interact. They’ve never been around people who speak to them. Uh, you know, they, haven’t learned just the niceties of, of those kinds of interactions. So there’s all, there’s all of that. But generally the, the focus on academics in special programs is just not there. Um, it’s really, the model is a caring model, a therapeutic model, a rehabilitation model. And, um, you know, yes, people may need some, some therapies, but that doesn’t have to define their, their whole lives.

Diane (46:07):
And, but pressure is so enormous. And, you know, I remember a former Deputy Minister of Education in New Brunswick where they had moved to the most inclusive system we have in Canada. Um, he said that the teachers who were the most, um, opposed to inclusion were those who had the most experience with segregation or years. Someone worked in a segregated setting, the more, uh, they thought that that was the best option. And unfortunately in some parts of Canada, certainly in Ontario, um, there’s such a strongly entrenched, special education system where teachers and principals and others have worked for years. And, you know, they’re not evil people. They, they think that they’re doing something good for their students, but they’ve never been exposed to, to other options. And, you know, I really can understand, and I empathize with them, parents who are told, you know, we can for you this really protected system, um, with lots of specialists or you’re going to be thrown to the wolves. Yeah.

Genia (47:36):
That’s exactly what parents are told. Yeah.

Diane (47:38):
And very few parents want to throw their children to the wolves. Yeah.

Genia (47:43):
Yeah. And yeah, the parents who have pushed have found, um, the path not necessarily easy, but I think one of the, but they’ve uncovered that actually, it’s not that dichotomy. It’s not, you know, we’re not actually faced with those, you know, a protected system or throwing your kids to the wolves, but that is what they’re told.

Diane (48:08):
Oh, absolutely. Yeah. Well, first of all, I mean, there are a lot of studies of abuse in segregated systems, whether you know, everything from, in the transportation to those programs, or, you know, there’s nothing like being surrounded by people who don’t speak, uh, to, to make you vulnerable. So, um, that’s, you know, that’s, uh, a bottom line that parents don’t think of, and it’s certainly not something that the schools will, will advertise. Um, and you know, unfortunately, um, we’re just starting to get more research on good inclusive systems and what the ingredients are. Um, for a long time, we didn’t have that research. We have it now, but there’s not a lot of research showing how little is achieved in segregated settings. There’s just an assumption that they’ve been good. And I’ve yet to find someone to show me that, you know, here are the benefits of a segregated education.

Diane (49:25):
Um, the, the only examples that, that I’ve heard of are in very, very specialized programs for learners who are deaf or who are blind. So for example, in the US uh, Gallaudet University is a high quality university for deaf learners. So I will accept that it’s very unusual. And, uh, I don’t think that it’s, um, you know, the only option, but for learners with intellectual disabilities, I have not never seen research that says your child will get a better education and have a better outcome as an adult being in a segregated setting. Mm.

Genia (50:10):
But there is research that demonstrates that inclusive education settings lead to good outcomes.

Diane (50:17):
Absolutely. Yeah, absolutely. Yeah.

Genia (50:20):
I think that’s really helpful. Um, Diane, when, if people wanted to learn more about Inclusion International or Catalyst for Inclusive Education, where would they find that information?

Diane (50:32):
Okay. Um, the website, um, inclusion-international.org is where to go. And, um, I have to admit that we’re just going through a transformation of our website. So there’s not as much there on the catalyst part of the website as, uh, we’ll be there eventually. But there are, um, references to a number of important documents. And I think most importantly, just, um, you know, stories of, uh, individuals with intellectual disabilities and their families about the importance of inclusive education.

Genia (51:21):
Diane, thank you very, very much for your time and thank you for your dedication over the last 50 years, to supporting people with intellectual disabilities to build positive lives. I’m very grateful for your time.

Diane (51:36):
Thank you so much and good luck to all the parents out there and just keep up your strength. However you can. Thank you. [inaudible].

Speaker 1 (51:54):
Thank you so much for joining Genia on the podcast. We hope you enjoyed today’s episode. See you next time.