#33 The What, Why and How of Inclusive Education with Marilyn Dolmage

Published by Genia Stephen on

You can listen to this podcast episode on iTunes or Spotify. You can read the transcript here.

This week’s podcast episode is the first of a series on the topic of inclusive education.  In the Fall, this week’s guest, Marilyn Dolmage, and I will be offering a course on the topic.Belonging In School: the What, Why and How of Inclusive Education” takes a strengths-based approach to combating discrimination against children with disabilities, building confidence in parents and educators about inclusive education and their capacity to move towards the vision of inclusive education and to help people to become effective members of the school team.  

Marilyn Dolmage has worked alongside people with disabilities, their families and communities to end segregation and create new supports and relationships for over 50 years. Marilyn didn’t want others to suffer like her brother Robert, who was sent away at birth because he was quickly diagnosed with Down syndrome.  

Marilyn Dolmage - inclusive education expert

Her family struggled to ensure that all three of her own kids attended school together and to assist her older son who had significant disabilities to have the education, medical treatment, employment, and community life that he wanted. Matthew’s sudden death in 2004 at the age of 29 has heightened her resolve to improve policy, promote effective inclusion, and strengthened families, schools, and communities.  

Marilyn and I discuss the what, why and how of inclusive education.  

As an inclusive education consultant, Marilyn assists schools and families to work together to improve education. She communicates with a broad network of allies across Ontario, Canada concerning the law, provincial policies, educational practices, and advocacy strategies. She is an associate of Inclusive Education Canada, the national inclusive education network. Marilyn was project coordinator for the Ontario Coalition for Inclusive Education and its members associations.

And since 1995, she’s been inspiring school communities to work for change to welcome, accommodate and celebrate individual differences among their students, assisting families to improve individual educational planning so that their sons and daughters get the support they need to learn as members of regular classrooms in their neighborhood schools, connecting special education advisory committee representatives to promote effective inclusive education in their school boards, gathering information from across Canada about innovative career development for students with disabilities leaving high school, and leading research funded by the Ministry of Education in conjunction with the Faculty of Education at Western University. 

This research supports an extensive body of literature about what inclusive education is and why it must happen. It considers how to sustain and enhance secondary school inclusion, especially from the perspectives of the school staff directly involved. And she’s created a community living Ontario resource kit for parents about effective inclusive education – what, why and how.

Transcript

Genia:          Welcome to the good things in life podcast, the podcast that helps parents of kids with intellectual disabilities to build good, inclusive lives in their community. I’m your host Genia Stephen. I’m an imperfect parent with a perfectly clear vision of where my son and other people with disabilities belong, right in the heart of community with everyone else. I’m stoked to announce the beginning of a series of episodes called Belonging in School. You will hear the stories of parents, mentors and thought leaders on the topic of inclusive education. The very first episode in the Belonging in School series is with Marilyn Dolmage. Marilyn has worked alongside people with disabilities, their families and communities to end segregation and create new supports and relationships for over 50 years. Marilyn didn’t want others to suffer like her brother Robert, who was sent away at birth because he was quickly diagnosed with Down syndrome.

Genia:          As an inclusive education consultant, Marilyn assists schools and families to work together to improve education. She communicates with a broad network of allies across Ontario, Canada concerning the law, provincial policies, educational practices, and advocacy strategies. She is an associate of Inclusive Education Canada, the national inclusive education network. Marilyn was project coordinator for the Ontario Coalition for Inclusive Education and its members associations. And since 1995, she’s been inspiring school communities to work for change to welcome, accommodate and celebrate individual differences among their students, assisting families to improve individual educational planning so that their sons and daughters get the support they need to learn as members of regular classrooms in their neighborhood schools, connecting special education advisory committee representatives to promote effective inclusive education in their school boards, gathering information from across Canada about innovative career development for students with disabilities leaving high school, and leading research funded by the Ministry of Education in conjunction with the Faculty of Education at Western University.

Genia:          This research supports an extensive body of literature about what inclusive education is and why it must happen. It considers how to sustain and enhance secondary school inclusion, especially from the perspectives of the school staff directly involved. And she’s created a community living Ontario resource kit for parents about effective inclusive education – what, why, and how. Marilyn has received the Ontario Federation for Cerebral Palsy Leadership and Education Award, the Integration Action for Inclusion in School and Community Hyde Prince Award, the Family Alliance Ontario Family Leadership Award, and the Canadian Association for Community Living Inclusive Education Award. Marilyn says she’s learned most from her three children whose insights have given her hope for the future. Her family struggled to ensure that all three kids attended school together and to assist her older son to have the education, medical treatment, employment, and community life that he wanted. Matthew’s sudden death in 2004 at the age of 29 has heightened her resolve to improve policy, promote effective inclusion, and strengthened families, schools, and communities. I’m sure you understand why I’m excited to have Marilyn on the podcast. And at the end of the podcast we talk about an upcoming additional resource that will be available in fall 2019 to assist families and educators build foundations for inclusive education. Let’s start the conversation.

Genia:          Marilyn, thank you so much for joining me today on the Good Things in Life Podcast. I’m really glad and grateful that you are here. We have known each other, I was trying to figure it out. I think that you and I met because your daughter and I are friends, and that friendship started I think before our first year of university, so more than 20 years ago now. And during that time, you have, you know, before that time, and since then you’ve continued to work tirelessly around promoting and supporting inclusive education for students with disabilities. And I’m so glad that you’ve come on the podcast today to share your story with the audience around, you know, the what, why and how’s of inclusive education. But more specifically, your story and why you believe it’s important. So, I’d like to just sort of turn it over to you with a question around how did you start on this path? How did you start on this journey?

Marilyn:      Well, I could start by saying that education is really the heart of the whole community and it’s how you grow up and who you know, who knows you. So, I mean I go way back when I was four and my brother was born with Down syndrome and was lost to me, was sent to an institution eventually where he died. And I always was curious. I always wanted a connection with him and with other people with disabilities just to, it was just what is happening over there, where people are sent and how can that be? It’s just wrong. It felt wrong. And so, I went to work at a government institution as soon as I finished university and I was very aware of segregation. I also worked in a preschool, one of the first community preschools for segregated, for kids with developmental disabilities.

Marilyn:      I worked in an institution while I was in university in the summer. So, after I’d worked five years at Huronia Regional Center Orillia, I left to have my own family and my oldest son, Matthew, who was born with considerable disability. That was, our struggles were mostly medical in those days, to make sure he was respected well, which, you know, the system really didn’t respect him. And as our other children were born, it seemed very important that he would have a brother and a sister and that they would grow up together. And our earliest, his earliest experience is with preschool was a segregated preschool where people were really supportive, but he was losing connection with this community. So, first I worked to get support in our neighborhood co-op nursery school, which was just amazing. It was so wonderful for all three of our children to be part of the community and to be into some extra support for everyone really was available and more, more knowledge of diversity.

Marilyn:      And so, after he started school, we actually started with the segregated school. And that was, it was very wrong right from the beginning. It was wrong for him to go on a bus every day and leave our community of Gravenhurst to go to the next town. We didn’t know what was happening there. When we asked questions, there was a lot of defensiveness and that was a really big alarm. So, we fought to get him out of there. And our first goal was that all three of our children would attend school together. This is back in the early eighties, and we really didn’t know what that would look like, but it was absolutely necessary first to get all three children in the same school. We didn’t know that support could come to the regular class. But in that journey, we had two years of legal action before we actually had to move to a community where they all could go to the neighborhood school.

Marilyn:      Matthew was still in a segregated class. But his first, his response to being included was just so amazing. He started just doing things for himself that would have been torturous to try to make him do. He just started to say I’m here and I can do things and I want to be part of the, it was just, it was the change in him. Plus the questions our other kids asked were really important. Why would he not go to school with them? It was just completely, they really questioned our decision to have sent him to that segregated school in the first place. And then we did after that. But, so we moved to a community where they all could go to the same school. We’d gained information about what that, what it could look like for him to be in regular class.

Marilyn:      At first, I’d been so used to dealing with the medical system that I approached the school system by telling them the problem, all of his medical, you know. Just, like what, why did I do that? I’ve been taught to do that. So, I knew that wasn’t the way to go. And so, his brother and sister really encouraged us and then all the other kids in the neighborhood school, their response and his response. And he just started surprising us because once he belonged, the motivation was there. It wasn’t some adult telling him what to do, which is like no go for him. It was I want to be part of the world and I am and I’m really keen about this. And also very proud of who he was and very, not at all negative, much more negative in segregated situations where everything was a struggle. So, our kids really taught us that this could happen. We started seeing these huge academic gains for Matthew as well, which we hadn’t really expected. Everybody in those days was saying, well, social gains might be made by the student with a disability. But, we saw that everyone was gaining. And now that, you know, all these years later, almost 40 years later, we know that the research was there 40 years ago proving both social and educational gains.

Genia:          Really?

Marilyn:      Yes. It was just being withheld from us and it’s still withheld.

Genia:          Yeah. That shocks me that the research was even there 40 years ago. I didn’t know that. I mean, I know it exists now and I know that the research supports the benefits of inclusive education for students at all degree of disability and also for students not identified as having disabilities. But I didn’t know that it existed 40 years ago.

Marilyn:      You know, the social gains we saw, we saw the social gains for all the kids. So, we saw that because our kids were all part of the community. Matthew went to Beavers and Cubs and Scouts and what was part was a volunteer at the Y. We did all those things. Again, it was our, you know, basic belief that he should be part of the community and that he really was an important part of the community. So, we saw other kids gaining socially from knowing him and him gaining socially by being part of things. We were very surprised by the academic gains he made because we’d been, you know, our expectations had been lowered. But now we know that he wasn’t holding anybody else back academically by making those gains himself. He, you know, important for other kids to read to kids. And he was actually, his friends in an elementary school told us his strengths, told us that he could read very well and that he spelled really well and that he, you know, that he was better than that on some things. So, they saw his contributions and then it helped us be committed that way as well, that we saw his strengths and he definitely saw his own strengths and that was amazing.

Genia:          So, when did your work transition from advocating for Matthew to being involved with other families and in inclusive education, advocacy and promotion in general?

Marilyn:      Yeah. Well, my work, I started to be paid for it in 1995.

Genia:          That helps.

Marilyn:      Yes. Before that, I am a social worker. I have a master’s degree. I, during those years of difficult struggle for our family, I went back to school and got a Master’s in Social Work and my thesis is on the ethical responsibility of social workers to advocate for inclusive education for, you know, for kids with significant disabilities. And it was a very big challenge to have people in the university see that that was something worth advocating for.

Genia:          Yeah.

Marilyn:      So, I did that and I also went back to work. I was chief social worker to close the government institution. So, a lot of those threads went together and during the time that I, the five years that I was, four years that I was chief social workers is very big job. Matthew was in high school and things were going much, much better in school for him. So, I, my volunteer work was around education and my social work was around in closing institutions. In 1995, that switched. So, my work became, I was project coordinator for the building inclusive schools project, which was a product of many years of advocacy that I was involved in through, I think there were at one point as many as 10 organizations in that coalition. And the government had started to use the word integration only started in 1995. We use the word inclusion then we went much further than that.

Genia:          Yeah.

Marilyn:      So, we had a project, there was a project to, where schools would come to the advocates and ask for help to become more inclusive. So, they had to meet our conditions. They had to want to work with us, which was like pretty incredible.

Genia:          Yeah.

Marilyn:      Any school would really say please, you know, come in and help us make some plans. And we connected them. There’s lots of collaboration that went on. So, 1995 that, it was a ministry funded project. We had that clout that the ministry was talking about, you know, because of us using the word inclusion. And we had sort of two sides of that. One was the project itself, but because we were already getting together around the project, we could do also do some political advocacy through the Ontario Coalition for Inclusive Education, which is the same groups working together. So then I, you know, I’m not a teacher. Jim, my husband Jim was a teacher for 31 years, so I don’t come at this as a teacher.

Marilyn:      I come as a community organizer. So, really putting people and ideas together. And so, some of the people that were involved were people that hadn’t been involved in school leadership before, that is students with and without disability labels, People First Ontario, self advocates who themselves have been labeled with developmental disabilities, parent groups and we did eventually have the connection with faculties of education and other professional groups. So, we, that brought together for me the personal and the professional. So, there was validity in talking about my own situation as a way to sort of connect with people. But there was a lot more information that I was gaining and that other people were gaining because we were working together. And we were on top of policy issues because we had the political side of things happening and we had the partnership with the ministry.

Marilyn:      We were able to generate a number of other projects out of that one. And we, you know, part of it was to pull together the knowledge base, the information base around inclusion, which came from, you know, not from me, but I gained from the partners that we met along the way. And still, a lot of it was around kids with intellectual disabilities. We had to be really careful. We actually, I was thinking last night, we let some schools go that didn’t see that way. It had to be about all kids. It had to be with kids with developmental disabilities. So, it was automatically a curriculum challenge. You know, how do you deal with, how do you, how are you a part of a classroom community when what your academic goals are not the same. All the kids are not the same, which was actually very rich and we learned a huge amount from the schools we’re working with who are dealing with other kinds of diversity, particularly people new to the country.

Marilyn:      And I guess that that’s the major area. Some also some indigenous communities where, you know, we weren’t that far away from residential schools and kids were being sent.

Genia:          Right.

Marilyn:      We’ll, Bradford for example, the community didn’t know well. So, we, it was a fascinating, wonderful time of having some resources to bring people together. And that the last piece of that really was a research project, again funded by the Ministry of Education about high school inclusion, which we worked with two schools and just had the great, we, our partners were, our main partner was the faculty of Education at Western University who helped us with the technical aspects of it. And again, though some of the resources that we pulled together for the research for things that we’ve been, that have been in our toolbox all along, not necessarily new at all, but just a new willingness to pick up the tools that were already there.

Marilyn:      And that’s what I feel now. There are tools already there, there just to be that willingness. And I certainly see families moving in the opposite direction that brothers and sisters are being separated. And the kinds of the intensive therapy stuff that Matthew absolutely rejected, you know, so the risk was he looked like a failure of therapy because he absolutely refused. There was once that someone thought that he couldn’t bend his knees because he just would not, so he was failing all those kinds of therapeutic goals because he had his own goals to the community and to pitch in and bring other people forward and, you know, improve the belonging of everyone around him, I believe.

Genia:          So, you mentioned, well I would love to talk about that. Just the idea of where therapy goals actually get achieved when, you know, people are embedded in rich community life. But I think that’s a topic for another conversation. You mentioned the research that was done during that time and the collecting of research that has been sort of an ongoing part of your professional life. And I wonder if you could talk in sort of broad strokes about the conclusions of the existing body of research on inclusive education. Obviously that’s, you know, there’s lots of valuable detail that will get missed in this, but just sort of in general, what does the research say?

Marilyn:      Well, I think the research shows that including people of all abilities in a classroom actually enriches education for everyone. And, you know, it was hard for me, I guess I’ll skip to personal for a sec, who’s hard to meet because I grew up in a school situation that was very rigid, you know. I remember sitting in you had, you couldn’t turn the page until everyone had read the page and being really frustrated with that. That sounds familiar to you.

Genia:          No, it doesn’t sound at all familiar. Sounds terrible. Whose idea? Like that’s just funny. Like when you think about it now, you’re like, who thought that was a good idea? Even factory worker preparation, right.

Marilyn:      But we have remnants of that even in kids, in students all reading the same material in a high school English class because who says there’s only one play about young love, you know. That everyone asks me Romeo and Juliet, like we’d all be in. And this are things that I learned by the teamwork with the schools. That we’d all be richer if the material was diverse and the approach to it was diverse. And for example, just a simple thing, but that some kids learn best by reading aloud. So, by having someone in their class who needs to be read to, that’s, it’s an opportunity that they wouldn’t normally have had. So, those are things that I learned along the way, which certainly, you know, I’d seen that personally, but to then to find that, we did a literature review for the Ministry of Education, high school research project, a brief one. We didn’t have a lot of money to do that. We didn’t have money to create our own research tools and we found them from University of New Hampshire. Like we just, I’d been carrying around and looked at. There was, there were, and we found the basis for that. So, we were able to plug in a lot of existing material. But the awful thing was that there was a lot of existing material, but people still debate it.

Marilyn:      They sort of, it was more like an attitudinal issue. There was one research study out of Queens actually in the, probably around 2010 or 2008 perhaps that surveyed people in Eastern Ontario about whether or not they thought inclusive education was a good idea. And so, it started, we used there, we sort of piggybacked on their literature review because all the literature said yes, it was. It was a good idea. It was effective, you know. But then what they did was ask people what they thought and no surprise. People thought it would work.

Genia:          Right.

Marilyn:      You know, we were able to jump in on the background to that study, which was very solidly pro inclusive education and say, let’s not ask people what they think, let’s actually do it.

Genia:          Right.

Marilyn:      And found the teachers who were really, really positive. So, some of the things that I, and I should say that, I mean through all that, all those years from at that point, that was 1995 when the project began to 2009 when the research ended, I have been a source of support for lots of families around the province. Partly because when I was paid, I could piggyback other roles and you know, connect again, connect people, find someone who could talk to someone, which is so great. It doesn’t cost much. And so, I’ve met with lots of families who were struggling and we developed strategies like, you know, write a letter to your child’s school if they won’t listen to you about their strengths and they won’t put that in the IEP, write a letter. And then we were sitting down and focus groups with high school teachers who said the best thing that ever happened was when a student wrote a letter, well she got support to write a letter, but she told me about herself and based on strengths and interests and what she’d done in the summer, who she knew, like all those things that we’d known for years

Genia:          Yeah.

Marilyn:      in the inclusion movement, but we hadn’t heard them from educators. And so, it was just a privilege to be there when those things were said and to be able to take note of them. I am frustrated that the ministry just filed our report away and very little attention has been paid to it over all these years, since 10 years.

Genia:          Well, that’s so often the case, right? Is that the really amazing resources and reports get created and then they collect dust on the shelf. But what I might take away really is that for parents and educators who are interested in inclusive education, the two things, the research supports that that’s a good thing to be interested in doing that it benefits everybody. And that while the ministry may not have done much with that research and that report, that it exists and it’s available for educators and it’s available for parents and so are many, many really high quality resources and tools that can help people to make inclusion work.

Marilyn:      Yeah, and I’ll add that our research study that was published in 2009 is about students with significant intellectual disabilities. Now we don’t like using those terms. We wanted to be clear that this is about students who are not anywhere near grade level in terms for the tasks they can do. It was intentionally set up that way because we wanted to see where the gap was really wide and whether that mattered.

Genia:          Yeah.

Marilyn:      And that’s, so that’s what’s really, really valuable about it.

Genia:          Yeah, that’s really, really exciting because there is still, as you referenced with the research from Queens about what people think about it, there’s still conversation. And I know this is sort of been a source of frustration for me. You know, I grew up in the disability community, so I’ve been watching advocacy for 40 years.

Marilyn:      Yeah.

Genia:          And I know that Leah, your daughter, my friend and I have expressed this as well. It’s incredibly frustrating how, that we’re still, as adults now, we’re still having the conversations that our parents were having when our sister and brother were young. And this is, despite the fact that, you know, there’s not really a question about whether inclusion, inclusive education and life in the community is good for people with disabilities and for schools and communities and …

Marilyn:      And there’s also plenty of research I think that shows that segregation is wrong and harmful.

Genia:          Yes, yes.

Marilyn:      And not only in terms of skills, but in terms of abuse and loneliness and all kinds of things that we just never get your childhood pack.

Genia:          Yeah.

Marilyn:      You never, I mean there certainly a lot of the other work I’ve done in terms of having, helping people leave institution and dealing with class action for those who are harmed. There are ways certainly to make people more part of things and better control of their lives. But you suffer so much from having been isolated as a child and having people focus on your negatives. Everything that’s wrong about, that’s everything that’s wrong about how to raise people, you know?

Genia:          Yeah.

Marilyn:      It’s just, it’s just wrong. And so there, I think that has been ignored that this, the research showing the harms of segregation has been ignored. And the research showing the positives of inclusion again though where it’s properly supported. But even then, I’ll say that certainly what Matthew was experiencing when he first spent time in a regular school wasn’t what we call inclusion at all. There were huge gains in his self esteem. Unbelievable gains. Like I was thinking of the story the other day where he, the first week he started to go to a segregated program in a room of the school. And he was walking through the halls with his crutches and meeting kids who were in trouble, who were, you know, were out in the hall.

Genia:          … in the hallway. Yeah.

Marilyn:      Oh, yeah. The first week of that, he started to do things around the house that he had never shown any interest in doing. He just, you know, crawled in the kitchen, climbed up on the cupboard and took the potato masher from my hand. And like, I can do that. I was like, “What?” This is a kid who would, you know, just averse to doing anything like that before. Well, how do you possibly explain? You know.

Genia:          Yeah.

Marilyn:      It’s just like coming from a dark cave into the world know.

Genia:          Yeah. Yeah.

Marilyn:      And so, you know, we had all the therapy programs. We weren’t very good at them, I don’t think. But people all told us these are the things, you know, behavior management and all this stuff we should be doing. When it was all about self esteem and we know that, you know, we know that about human beings.

Genia:          Right.

Marilyn:      We just forget, like the common sense is forgotten when there’s a disability label.

Genia:          That’s so true.

Marilyn:      It’s just complete and utter prejudice discrimination. It’s like you’re not really human being.

Genia:          Yeah, absolutely. Absolutely. I couldn’t agree with you more. And I, you know, I really just want to highlight one of the important points that you just made, which is even when inclusion is not done well, it can still yield very positive results. And that that fact doesn’t mean that people can’t be harmed in an inclusive environment. You know, if people are going to be abusive or neglectful, then that of course can occur in an inclusive environment. I’m just really aware of these sort of like either or dichotomous thinking that you sometimes hear from people. Well, you know, some bad things can happen in inclusive education settings and absolutely, of course that’s true. But the fact that that’s true doesn’t rule out that even imperfect inclusion can yield benefits. And that’s certainly been my son’s experience. You know, when there’s like some even just basic effort to keep Will in the class even when the team and I have been struggling or in conflict, you know, at different times over his school career, that he has still yielded very, very significant benefits from being …

Marilyn:      Yeah. When bad is bad, the bad things can happen to anybody anywhere.

Genia:          That’s right. Yeah.

Marilyn:      And that’s risk. You know.

Genia:          Yeah.

Marilyn:      You’re taking a chance on some of those things like you’re, so many times more likely to hear about it if there were other kids around, I mean, that’s one thing with the other kids. And again, I think that’s what good teachers have always told us is that the, it’s the other kids that are, it’s kids teaching each other that’s really what education is all about. And so, the teacher who can make that community happen in the classroom is, and other kids keep each other safe to some extent. So, if no one can speak, if everybody’s hidden away, those are the problems.

Genia:          Yes. Yeah.

Marilyn:      And segregated school, that’s what we caught. You know, we, the minute I said, well, I’ll come in and observe, then everybody’s back was up and then you really have to wonder why. So, but yeah, I mean kids, kids teach each other. So, there was something else you said. I can’t, I’m just trying to think what it was. But anyway, Matthew taught us those things on a personal level, but they fit with everything else that I knew on a professional level. You know, right back to my own brother dying in institution to what I saw when I worked in an institution to why it was important to close them. And it was about the, I think the conditions for inclusion. I should say, yeah, what I was going to say is that that inclusion isn’t inclusion. You know, so

Genia:          It’s so important.

Marilyn:      If it’s done badly, if students don’t feel they belong, if people are not safe, if it’s not, you know, that if there isn’t that sort of richness of learning among students, then it won’t happen. But it is an inclusion. And so, things that go wrong there went wrong because there was something missing. So, inclusion is sort of an aspirational thing. I mean, there are all these things we hope for. Nobody’s life is perfect. They’re not always there.

Genia:          Right. Yeah.

Marilyn:      But to think part, the big piece for families is to say, and everybody I’ve met, you know, over 50 plus years of social work, scary as that is, knows first what they don’t want. That small scale. Like they know, they don’t know what they want. It’s hard to say, here’s my list of all the things that must exist in a school situation for my child or in a recreation or whatever. But we know we don’t want. And so, if we start with that, I mean that’s our first thing was we didn’t want our three children separated.

Genia:          Yeah.

Marilyn:      That that was wrong. And so, we were going to start, we were going to stop that and we were going to turn it into something else. We didn’t know what that other thing was, but it just had stopped. So, it’s, and you know, it’s adulting. You know, it’s being a parent. It’s being able to say I will not send my child to that situation where he’s being hurt. And some people are, you know, for many reasons, it’s hard to do that.

Genia:          Yeah.

Marilyn:      Hard to say because then you’re stuck, you know, what else is there? But it’s all about finding people who will help you find another way.

Genia:          Right?

Marilyn:      And those stories are out there.

Genia:          Yeah.

Marilyn:      You’ll just be able to share them better. But it’s, you know, there are lots of reasons why that’s hard, but everybody in society should be helping people stop having bad things happen to their kids. It should be our shared responsibility. So, you know, for us it was really, Matthew cannot ever go back to that segregated school. It has to stop. We don’t know what’s next, but it’s not that. And two years of limbo now, nobody should have to ensure that. Now that was four years ago. So, we have networks and we have ways of sharing a lot more information.

Genia:          Well, this is perhaps a good time to introduce the course that you and I are going to be offering in the fall of 2019 called Belonging In School: the What, Why and How of Inclusive Education. And really our aim, and I’m going to hand this over to you in a second, but our aim is to really provide a solid foundation for parents and educators who are interested in inclusive education. Perhaps they’ve been, you know, experiencing segregation or experiencing integration which I would, perhaps in this context argue is, you know, if you’ve got your kid in a regular school but you’re not really seeing good inclusion, it’s probably at best described as integration. You know, maybe things have been kind of middling along or maybe you are really, as you experienced, rejecting a system of segregated education that’s been really harmful to your child and you’re looking for a solid foundation by which to understand what is inclusive education, what does it look like?

Genia:          How do we know when we’ve arrived, you know, why again, in more depth than we’ve talked about in this podcast episode. Although I think you’ve given an excellent overview of why inclusion matters so much and then some basics around house so that people have some basic but critical tools for understanding how to move towards that vision of inclusive education. And then where to go for additional resources and teaching. And as we’ve already said, those tools and resources exist and they are available. And so, we are aiming to kind of get people feeling confident and ready to sort of move forward, but then also provide, you know, a network and community forums so that people can be, you know, engaging with each other collaboratively on this journey. And so, you know, that’s sort of the what we’re doing and a little bit of the why, but I wonder if you wanted to speak just a little bit about why is this still needed? Like after all of these years, why do we, you and I are, I mean speak, you can speak for me if you would like, you can speak for the royal us and the royal we or you can just be for yourself. But after all of this time, why do you still need to do this work? And why is it still important that we continue to provide resources like this course to parents and educators?

Marilyn:      Well, I suppose the big, deep answer is because there’s huge discrimination against people with disabilities, but why is that? You know, that’s reinforced by segregating, separating people. So, I don’t know. I think one of the things is the pecking order around disability, the sense that some disabilities are better than others and that some people are more likely to be salvaged. You know, so in a system that, where we struggle around disability, it would be better not to have one, you know. So, and some of it is people making money on this that there’s this idea that if you sign onto this particular program or you get this many hours of support or whatever, you can change somebody, you can change behavior. You could just look at the symptoms of the problem, which is the behavior and change it and then everything would be fine. And maybe there are a few people for whom that works. But when you believe that, you’re kind of putting everybody else out of the picture and you’re saying, well, if you don’t, if you still have a disability after x number of hours of support or therapists or surgeries or whatever it might be, then too bad, you know. So, there’s that dream, I mean, it would, given that disability is treated badly in society, it would be better not to have one.

Marilyn:      And that’s the sort of quick idea that people think that they could get, mind you that go to huge lengths to try to get it, you know, to isolate children for years. So, in some ways some of our early work was around those with more significant disabilities that everyone else had written off. And what kind of bothers me is, well, if it benefits kids with significant, you know, who are farther away from the skill levels, why wouldn’t it benefit those who are closer to the skill level?

Genia:          Right. Yeah.

Marilyn:      So, yeah, I don’t know. The prejudice and discrimination persist. Well, all we want is for schools to do their job. So, when we know that their job is done best, when students of all abilities are learning together, then that gives us more confidence I think to just ask them to do it.

Genia:          Right.

Marilyn:      To just expect more.

Genia:          Yeah.

Marilyn:      Expect more of the school rather than expect more of the child.

Genia:          Yeah.

Marilyn:      You know, that the child has to come up to a certain level in order to get in. No, that’s not good for anybody. Having the confidence as a parent to say, my child is not taking away from anybody else that I, you know, when I just start a little discussion today makes me remember how important that is. If you know that the research shows that all kids benefit from the proper conditions. And the other thing is that all of the definitions that I’ve worked with over the years end up being not about disability at all.

Genia:          The definitions of what? Sorry.

Marilyn:      The definitions of inclusion. So, when we talk about belonging, we talk about strengths, focus. We talk about going to your neighborhood school, getting help when you need it. You know, just very generally. That’s not a disability specific thing, that’s about all kids. So, the things that we define as inclusion, cause I guess there’s always this sense that if we believe the world has a finite amount of resources around children, then some kids need more and maybe some people are afraid to ask. But if you believe that actually your child is an asset to the classroom, that’s a whole different mindset.

Genia:          Yes.

Marilyn:      And, but not what people are learning through therapy programs. They’re learning that the problem resides in their child and that it’s only that child that needs to change. And once that happens, everything would be fine. But the thing is, what I learned was kids don’t change under those circumstances. Very rarely really change under those circumstances. Kids changed by being part of the group. And by the, because kids, you know, it’s just the human nature. Everyone learns when we focus on your strengths. Everyone learns where we connect them with friends and make them part of things.

Genia:          Yeah. Well it’s kind of like the idea of, you know, whether if you kind of think of children like any other organic being, if you isolate them in a laboratory and compare their growth to if you leave them in their habitat and you know, as part of a great rich ecosystem, then they’re far more likely to thrive than they are in the laboratory.

Marilyn:      And they learn a lot more about the habitat that works, right?

Genia:          Yes.

Marilyn:      That’s what inclusion teaches us. That this is good for everybody including and belonging. We need to understand that more than the disability. Is that, is it like parents shouldn’t have to understand everything about how to teach.

Genia:          Right? Yeah.

Marilyn:      We could be able to go to a school and say, yeah, you’re the teacher. You know how to teach. Unfortunately, when we’re in a struggle, we do have to push harder. We do have to maybe just to remind ourselves that we’re right.

Genia:          Yeah.

Marilyn:      That we’re going the right direction. We see it in our own kids. At least we did. We saw the benefit to Matthew immediately from being one of the group and we also saw the academic gains that we never thought he’d make with technology and things especially.

Genia:          Then, I think you’ve really covered some really important points around why we’re offering this course and what this course delivers. And essentially, what I’ve heard and what, you know, what we’re aiming to do with Belonging In School: the What, Why and How of Inclusive Education is that the course takes a strengths-based approach to combating discrimination against children with disabilities, building confidence in parents and educators about inclusive education and their capacity to move towards that vision of inclusive education and to help people to become effective members of the school team. Bringing in, you know, their contributions depending on the role that they fill.

Marilyn:      Yeah. And given how the fact that this is still difficult, I think, you know, I’ve been criticized for this sometimes, but I think in a course like this, the how to is important as well. So, it’s all of it, right? But not because parents need to be teachers or need to learn all the teachers.

Genia:          Right.

Marilyn:      But that, we know what we’re asking of teachers isn’t a big deal. Like by trying it ourselves, just trying it out. And so, I often look at a situation where for a child who’s not able to be part of everything everyone else is doing and look at a high school curriculum, piece of curriculum lesson and say, can this student participate like everyone else? If yes, go ahead and do it. If no, here are series of things to look at. And not because parents need to be doing that on a daily basis, but we need to know that what we’re asking teachers to do is really good education and that it’ll be better for everyone. And there’s lots of feedback loops in it where other students are participating. There’s lots of interaction, use of technology and ways ultimately that the student is contributing to the class. So, that’s an important piece of it because it’s not all the things you have to do for her, but all the things she can, her presence and belonging in that class creates learning opportunities. It’s learning opportunities, not just, you know, we’re all nice here together.

Genia:          Right. Yeah. Excellent.

Genia:          This episode of the Good Things in Life Podcast is sponsored by the upcoming course with Marilyn Domage Belonging In School: the What, Why and How of inclusive education. If you’re interested in learning more about Belonging In School, go to goodthingsinlife.org/bis for belonging in school. Our next week’s podcast you’ll hear from Gordon Porter. Gordon is the director of Inclusive Education Canada, an initiative of the Canadian Association for Community Living. He’s also a former chairperson of the new Brunswick Human Rights Commission. Dr. Porter is an internationally known expert on inclusive education, who’s consulted, lectured, and conducted training in numerous countries around the world. He was invited to make an expert presentation to the United Nations Human Rights Committee in Geneva and in August, 2009 Dr. Porter received an honorary doctorate from the National Pedagogical University of Peru in recognition of his work on inclusive education in that country. Porter has guided the development of policy on inclusive education in New Brunswick, Northwest Territories, Dubai and Nova Scotia. He’s edited two books and written numerous articles on inclusive education. In recognition of his long career of distinguished service, he was awarded the Order of Canada in 2010 and the Order of New Brunswick in 2013. You can look forward to an informative discussion about the how’s and the why’s of inclusive education next week on the Good Things in Life Podcast. Until then, I hope you have a wonderful week. Take care.

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Special thanks to Marilyn Dolmage for joining me this week. Until next time! 


Genia Stephen

Started young with a sister with a disability, amazing mentors and a strong mother with a vision. Now a mother to two sons, one of whom has a disability, a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. Genia’s a registered midwife, International Board Certified Lactation Consultant, MSc in Evidence-Based Health Care (student), Speaker, Presenter, Podcast host, and founder of Good Things in Life which offers resources, courses and networking opportunities for a community of parents with a shared vision of the good things in life for their children with disabilities.

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