#043 Dave Hasbury on the capacity of community to accept people with disabilities.

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Dave Hasbury is a storyteller, a facilitator and an advocate.

For more than 30 years he has been committed to engaging the power of CoCreation —people gathering together to creatively shape the world around them.

In 2008 Dave began working for Neighbours Inc. and Neighbours International. Davecollaborates with Patti Scott (Neighbours C.E.O.), his wife and partner, in supporting people with disabilities, families, communities, organizations, and governments in making it possible to live as contributing citizens and community members, where all can make a difference.

Dave has worked extensively with diverse groups, large and small (6-1000) interested in youth, people with disabilities, community development, cultural diversity, the arts, inclusive education, literacy, health and social services, social planning, coalition building, and community economic development.

people with disabilities

In this interview, Dave and I discuss the capacity of the community to welcome people with disabilities. Dave weaves the stories of many people that he has known into our conversation to beautifully illustrate his points.

Here are a few landmarks in the discussion.

  • [32:35] Schools are designed for exclusion and stratification of society.
  • [35:40] The history of inclusion versus integration.
  • [47:24] Parents have a choice. Amplifying the good or focusing on the problems.
  • [1:08:27] How we show up determines the likelihood of being accepted in the community. Identifying, fostering and sharing gifts is a powerful, positive way to find places of belonging and relationship.


Genia:            Welcome to the Good Things in Life Podcast. I’m your host Genia Stephen. Today on the podcast I’m speaking with David Hasbury. Dave and I have known each other for frankly longer than I care to admit. Uh, Dave has been a, um, for more than 30 years, he’s been committed to engaging the power of co-creation, which is people gathering together to creatively shape the world around them. In 2008, Dave began working for Neighbors Inc and Neighbors International and this is a collaboration with Patti Scott, who’s the Neighbor’s, um, CEO, his wife and partner and they support people with disabilities, their families, communities, organizations and governments in making it possible to live as contributing citizens and community members where all can make a difference. Dave’s worked with diverse groups, extensively large and small, interested in youth, people with disabilities, community development, cultural diversity, the arts, inclusive education, literacy, health and social services, social planning, coalition building and community economic development.

Genia:            Dave and I worked together long before Dave was, um, involved with Neighbors for an organization called People First of Ontario. And I think we actually worked together in People First of Canada as well. And People First, if you’re not familiar as an organization of adults with intellectual disabilities who are advocating on behalf of the rights and interests of adults with intellectual disabilities. So Dave and I have long been circling and within the same communities and today we had a really great conversation that was really important to me around this idea of how community happens, how to create opportunity in community and how we, where we start from, where does our introduction and our thought start from. And Dave talks really compellingly about starting with the idea of gifts and the idea that people with disabilities have gifts to give, but that there are only truly gifts if we find a way for them to be received. Anyway, I won’t take any more time. Let’s get right into the conversation with David Hasbury.

Genia:            Welcome to the Good Things in Life Podcast. Dave Hasbury, I’m really, really grateful that you have agreed to speak with me today about the capacity of community for, um, accepting and, um, and being a place of belonging for people with disabilities. We have known each other for many, many years and first met when we worked together at People First and that was 20 years ago?

Dave:             Yeah, it was. It was more than that now. Yeah, 22 years ago.

Genia:            So a long time. So, Dave, I wonder if you could start by introducing yourself and talking about, um, your relationship with people with disabilities and their families.

Dave:             Sure. So it all started when I was born and that’s kind of a joke, but it’s kind of not. The year that I was born, my cousin, um, her name is Joanne, um, was born three months before me. And Joanne was born with cerebral palsy and, uh, she had a brother John, who also was born with cerebral palsy. Um, John unfortunately passed away when he was about five years old, but Joanne, um, grew up and she required a lot of, um, a lot of attention because she wasn’t able to walk. She wasn’t able to speak. Um, but that was born in 1958 and, um, the world was such that very early on, um, the conversations with the medical profession and my aunt and uncle were all about how it wasn’t going to be good for them, for Joanne to stay living with them. And they were grappling with great struggle about that.

Dave:             I, I come from a, a large dysfunctional Irish Catholic family. Um, uh, but, uh, the importance for large, dysfunctional Irish fat Catholic families is this family, um, and the idea that Joanne would be sent away to an institution, um, was heart wrenching and it was heart wrenching for the whole family. I think. Um, there was always a hole that was left. So somewhere around the age of nine or 10, Joanne was sent away to an institution in, uh, um, in, and I believe was great in hers. Um, and at the time, uh, I don’t know what it was like for you, but, um, we just didn’t drive far. Um, it wasn’t, so when you’re that far away, it was, you know, two, two and a half hours away from where we lived, um, she was disconnected from our family in the regular gatherings and all of that kind of stuff.

Dave:             So I just watched that. So I say that I started when I was born. I noticed that as a child growing up, I noticed this gap. Um, and um, and then when I was a, I hope this isn’t too much detail, but it actually relates, um, when I was a teenager I actually started reading the writings of John Benyei. Um, and, um, I had also been volunteering. I, uh, I was an athlete at school and my football coach, um, asked if I would volunteer our school had a swimming pool in it. Um, and the, the School for the Retarded, that was the title at the time

Genia:            Yup.

Dave:             um, came to our school for swimming, not swimming classes, there was a lot of teaching going on, [inaudible] splashes so it was more what it was like.

Genia:            Yeah.

Dave:             And my coach asked me if I would volunteer to be in that and I was probably 16 years old at the time. And I remember going into the pool and, um, and there cavernous these buildings in the sound kind of as this, and there were all kinds of sounds that were going on. There were laughter and grunts and, and vocalizations and, and there was a young woman running down the deck and her top was partly fallen off and there were, you know, people sitting on the edge just rocking and all that kind of stuff. And when I was struck by, and that was, here I was, I was a, um, an athlete and that’s all come I was there, I was chosen from my coach. Um, I did well in school, I socially got along, I had lots of relationships with people, um, all that kind of stuff. And yet I looked at the people that I was with and I kind of went, “Wow, they are so transparent.” Because I knew that there’s a lot of stuff you do as a teenager to kind of fit in. Um, and um, even if you’re not feeling all that stuff inside, it’s kind of a survival mechanism. You just do what you can with your group of people that kind of, um, they just were who they were.

Dave:             Um, and it struck me that not necessarily a conscious courage, but it’s not an easy thing to just be who you are.

Genia:            Right.

Dave:             Um, so anyway, I was really struck by that. Um, went off to study school, came out of school and started working, uh, at Surrey Place Centre in Downtown Toronto, um, on my behavioral unit, um, with, uh, doing what I would consider to be not so great things for kids who are hurting themselves really badly. Um, a young boy named Tony that I spent my time with, a 12 year old boy. He was hitting himself in every part of his body. And my job was to try to figure out how to stop him to do that, which was, I would not say anyone should do. Um, but was to intervene with his hitting and kind of, I had these incredible charts of, of tracking how much hitting he was doing.

Dave:             And while I would agree that as time went on, he was hitting himself less and less. I, I kind of just felt like there’s something crazy about this. First of all, Tony came from an Italian family and that family is everything. Um, and uh, we were in downtown Toronto for anybody who doesn’t know Surrey Place Centre is located among government buildings in the University of Toronto, um, in Downtown Toronto. And that was his, he was supposed to be there for six weeks. And when I met him, he was there for two and a half years.

Genia:            Oh wow.

Dave:             And uh, and that, so that became his neighborhood. So here we are walking in the streets of Toronto with nobody to connect to that he would have any relationship with. Um, and Tony wearing a helmet and arm pads and knee pads and you know, trying to smack himself in the head with his knees and all this kind of stuff. And we had no context. He was totally out of context. And so the idea that he would just be discovered as somebody who had something to offer was just crazy thing. Um, and around the same time, I left that job and I started working for a social justice youth organization in Toronto with the Catholic church. Um, and uh, in that time, um, a man by the name of Peter Dill came to visit. Um, and Peter, uh, who was a friend of the dirt. You know, the person who founded, um, uh, Youth Core was the name of the organization, um, was a priest and Peter knew Tom MacKillop and came to visit our team. And what he was doing and visiting our team was introducing a woman by the name of Judith Snow who, um, for those of you who don’t know, Judith was a brilliant, is a brilliant woman because her ideas to live on.

Dave:             Um, but she, uh, she grew up with muscular dystrophy, muscular atrophy I believe. Um, and when I met Judith, she had the use of her voice. She could speak, she could think, um, and she could control her wheelchair with her thumb, um, at the time. And Peter introduced this person, um, to me and, and their team and was saying, she’s looking for somebody to be a personal attendant. And so I decided to take on that role. And through that I learned incredible things and met incredible people, including Peter Dill, um, who I then went on to work with later on, um, who was a director of the central region community services for, um, the Metro Association for the Mentally Retarded, which was the largest service provider in North America, I believe at the time.

Dave:             And um, and through that working with Judith, what I learned was about listening and about listening for what messages somebody is speaking and how can you be respectful of that and provide support in a way that, um, is about what the person is indicating. And you know, I learned over time that it was much better for Judith, that she didn’t have to say it, um, because it’s a pain in the butt to have to always be instructing, but you had to listen to her enough to kind of know. So I learned a lot about that. And of course I also got to accompany her to many places and listened to her speak and watch her interactions where I learned really, she really did have a lot to say about giftedness and about the giftedness of, of people. Um, and that needs to be our focus.

Genia:            I didn’t know that you worked with Judith. Um, so From Behind the Piano, am I remembering the name of her book correctly?

Dave:             Yeah. Yeah With Jack Pearpoint. Yeah.

Genia:            Yup. So that, From Behind the Piano, uh, sorry, I’m pulling this, I’m pulling this detail from the, through recesses of my brain, but from the, from behind the, she, she wrote a lot. So if people are interested in, in reading what, um, um, some of Judith’s work, um, there, there are lots of opportunities, but I think From Behind the Piano was her story. Was it not?

Dave:             It was a story. Yes. It was her story with Jack Pearpoint who was a part of Judith’s support circle.

Genia:            Right. Yeah. So, um, if people are interested, I will, uh, put a link to that [inaudible]

Dave:             Yeah, inclusion.com is where you can get all of the writings of Judith Snow. So, um, uh, they, From Behind the Piano was one of the early works that she did with Jack, which by the way, Jack, Judith had lived. She had gotten to, just a brief thing about Judith, just so we can kind of put the context on all this. Um, uh, Judith grew up in a family in, uh, Ajax I believe, um, and uh, or Scarborough and um, she, her family made sure that she went to school, um, and she again, um, while her muscles didn’t work or brain was active and alive all the time. Um, and she was quite brilliant and ended up going off to university at York University where at the time, um, you could, uh, get support for attending care and other needs for people with disabilities through vocational rehabilitation services.

Dave:             Um, which was the idea of, uh, supporting people to become trained so that they can be employable in the workforce and all that kind of stuff. And so she went there and as in doing that, she was able to live on campus. Um, or in an apartment near campus and, uh, live there and got two university degrees. She got a bachelor’s degree in a master’s degree in clinical psychology. And then she, and then she was also a part of the Center for, um, Students with Disabilities at York university where she worked. Um, and, um, when she was done her studies according to vocational rehabilitation services, um, she was no longer in the, um, under their auspices because they were only working with people who were in preparation for work. So she had actually found work. And what happened was, is that the government says, well, if you’ve already become employed then the only place that we offer services was in a chronic care hospital.

Dave:             Um, and so she went to live in a chronic care hospital and eventually what happened, she, while she was working at York University, she got to know Peter Dill and they became quite strong allies with each other and collaborators and work and all kinds of things. Um, and uh, one day she rolled into Peter’s office and stop talking, which was very unlike Judith. And so Peter contacted Marsha Forest, who was also one of the people at York university that, um, Marsha was working in education, um, uh, who was an ally of Judith and said, “Judith not talking and we’ve got to do something.” And she wasn’t talking because in some ways nobody was listening. Um, she was actually becoming malnourished because she would go off to work in the daytime and then come home in the evening and either have missed the dinner hour, um, which that’s it.

Dave:             Like if you’re not in the schedule at a certain time, you’re not getting fed. Um, and then put into the rotation for who’s going to bed and you’re either going to bed at seven o’clock or you’re going to bed at nine o’clock, but you’re going to bed in between this window of time and you’re not in control of it. And so she had stopped talking. And so they, um, Marsha and Peter decided to find a way to have Judith come together at Marsha’s house with Jack Pearpoint, who was Marsha’s husband and, um, they called people who were friends and allies of Judith to say we have to do something. And that group of people who rallied around Judith by the invitation of Peter and, and Marsha, um, uh, eventually became known as the Joshua Committee because you look, um, referenced them as that, as the group that kind of surrounded the city to bring down the walls.

Dave:             Um, and, uh, and Peter Dill was one of those people. So that’s how I met Peter was because he was a member of the Joshua Committee and that, and then through that in my work with Judith, um, has her attended, um, you know, I would share lots of ideas that I had at the time as well. And Marsha Forest was the person who was, um, the liaison from the Joshua Committee with the personal attendance. And, um, Marsha was working at the National Institute on Mental Retardation, the [inaudible] later on. Um, and, um, and her job was to put the idea of the inclusion of children with disabilities in education, um, in the regular system of education on the map to make this, why the importance of that was, uh, and eventually what happened is Marsha asked me to come and work with her at the national Institute, um, and uh, company her as she was trying to work with the education system.

Dave:             And through that I met a lot of, um, mighty parents who were committed, um, including your mom, uh, and um, others, uh, um, through that era, uh, who were committed to the idea that if our children were born into our family and we know they are members of our family and they bring something to our family, then they should be able to go to school with their brothers and sisters and their neighbors and the people who are nearby. And we should learn how to actually be together. And through that process, um, uh, we began developing person centered planning tools for that purpose, um, with kids in school. Cause if you’re going to include kids in school, it’s not about the principal just saying the kid’s going to be in school. It means that the kids have to be engaged in that whole dynamic.

Genia:            Yeah.

Dave:             Um, so that’s a, that’s where we started, um, on that process and spent probably about five, six years with them. Um, uh, working in that capacity. And as I said, met this incredible group of parents because this was not too long after really the first law in education came into place, which actually said that children with developmental disabilities actually had a right to go to school.

Genia:            Right. Yeah.

Dave:             And so this group was saying not only do they have a right to go to school, but they have a right to go to the school where their brothers and sisters go to school and which at the time all the education system was designed as a segregated, um, center based kind of. So people were bused in from all over to go to the special school and the special classes.

Genia:            Yeah. Yeah.

Dave:             You can stop me at any time cause I could go on and on.

Genia:            Yeah. Well, I mean I, there are a number of things that, um, that you’ve said that I think could be full conversations on their own. I really do want to come back to the education piece, but I know now you are not in Ontario and your work is with neighbors and I do want to, um, I do want to hear about that as well.

Dave:             Yeah, sure. So, um, in a, I, I got to know and then fall in love with somebody, um, who, whose name is Patti Scott. And Patti, um, in 1995, 94, 95, um, had been working in the field of developmental disabilities providing um, uh, traditional services at the time, which in New Jersey largely that meant, um, six person group homes. Um, she was also responsible for a respite group home, um, connected with lots and she had grown, started from the role as a direct support person in a house, a group home with a bunch of men, uh, that live there and eventually moved her way through. So in 15 years she had become the co-executive director. And, um, again, this, uh, everything with me is about a story. So, um, what had happened was, um, well there were people who would show up in these crisis group, of these crisis respite houses who were people that were just in, um, a traumatic experience and needed some place to go. Um, and so this house and, and through that process, um, a woman named Janine, um, uh, came to live there for a short period of time and she had been living with her father. Um, both of them were the Italian descent, um, and, uh, you know, boisterous and passionate and all of that kind of stuff that goes along and they loved each other dearly.

Dave:             Um, but they actually, uh, would come to blows with each other a lot. And, um, to the point, Janine was around the same age as Patti at the time and her mid thirties. And, um, Janine tried to kill herself. And that’s how she ended up in this. And she got to know Patti because they were two women around the same age, they would talk about things that were, they wanted in their lives. And they wanted to have their own home and they wanted to, you know, meet men and they wanted to get a job and work and they want, you know, they wanted all these kinds of things. So Patti recognize all the things that Janine wanted. And then one Friday evening, um, the people from the state, and they had actually done a plan because Patti had learned a lot about person centered planning from people like Marsha Forest and Jack Pearpoint and John O’Brien.

Dave:             And, um, they’d actually done a plan of how she could actually do this, um, with the money available from the state. How could she actually do this? And they’d put this forward as proposal forward to the government for how she could leave the crisis respite home and move out into her own place, um, with various kinds of support. And, uh, on a Friday evening, late in the afternoon, um, uh, they got a phone call or she got a phone call from the government, the developmental disabilities division, um, saying that she couldn’t do that and that Janine would not be able to do that. And the reason cited was that, um, uh, neighbor, or not neighbors, the organization that, um, Patti was the executive director for, um, actually had beds available in their various residential options. And um, from the government perspective, as long as there was an empty bed, then that was the option for you need to take.

Dave:             And uh, so this was incredibly frustrating and um, painful for Janine and her father and um, the, and they said that Janine has two choices. She can go home with her dad or she can go into one of your beds. Um, so at that point, Patti, um, made a decision that there has to be another way. And um, so she just started to imagine what would it be like to actually run an organization that from the get go, we take people one at a time and imagine what they’re trying to see in their lives and find a way to put all those resources together. So in 1995, she established some organization called Neighbors, Inc that was built on this idea. One person at a time pay attention to what they’re looking for in their lives and how can you find the resources to allow them.

Dave:             And she was able to make some relationships. She had established some good working relationships with some people within the state mechanism who made it possible for her to start that. So she started Neighbors. And then in 2009 throughout that period, um, particularly from the late nineties, um, to 2009, 2008, um, Patti had, what she was doing was actually quite a radical, um, mode of operating here in the United States. There weren’t many people that were doing organizations on this kind of one person at a time mode. And, um, so people contact her, do conversations, conferences and all that kind of stuff. By 2008, um, it became clear that that was a, um, something that was being called for. And it also was something to do. And I had known Patti through that period of time and, um, uh, we had made a decision that I would come and join her in that work.

Dave:             Um, because she was being invited all over the world. It wasn’t just in the United States and in various states. It was actually in the UK and in Australia. And um, she had done some stuff in India. Um, so we joined together and, um, for the last 10 years have been, um, working with people who are struggling and trying to figure out how does, how does support happen in communities so that people can, um, and we work with, uh, governments that are trying to figure it out cause it’s not all bad folks in government. Some people would like to, they’re just restricted so much by the forces that go on. But we also work with, um, community organizations and parents and, um, uh, service providers, um, trying to figure it out because it, it really is contrast to the way the world is designed for people with disabilities. We’re not designed to think of one person at a time.

Genia:            And the services aren’t designed that way anyway.

Dave:             You know, the education system isn’t either. So, um,

Genia:            Yeah. Yeah, that’s true. Yeah.

Dave:             So from the entire age, any intervention from government, um, is pretty much, um, not individualized. Um, and then the medical profession most often is actually not as much focused on the individual as a whole person, but their medical concerns.

Genia:            Right.

Dave:             And therefore you’re really not dealing with a person in that way either. So all systems that are interventions actually are really not paying attention to what it take for this person to live in a happy, healthy life.

Genia:            Yeah.

Dave:             As a member of the community, so

Genia:            So what happened to Janine?

Dave:              Well, unfortunately, um, Janine did end up going into one of those, uh, um, uh, group homes, um, and she did live there. Um, and they figured out a way to support her. Um, uh, and her father and her still had their time together. But, um, over time, Janine left the organization that Patti was with at the time and went to another organization. Um, over time they did lose touch. Um, uh, you know, part of it is that, uh, uh, families, and this is probably still true to this day, that, you know, Janine’s father probably didn’t have a wide network of support, um, for what he was trying to do and be as apparent. He was not prepared for facing all of these systems and you know, fighting and all of that kind of stuff. And um, and so if you’re alone in that front, eventually the system does take over.

Genia:            Yes, it does.

Dave:             You know, people are handed over to, um, places where, and decisions are taken out of the hands of individuals a lot of the time and they become those broad base decisions. So it’s really a part of that is, is that in order to, to face this kind of challenge of a system that is, that really doesn’t recognize that there’s a place for people, um, it means that those who love that person need to have a network of people who can be with them to figure out how to navigate that all the time. And if they don’t, then the system is much bigger than they are.

Genia:            Well, that’s a nice segue into what I hope that we would talk about today, which is the capacity.

Dave:             [inaudible]

Genia:            Well, I think, I think just your introduction is, um, it really speaks to the topic. Um, so, you know, when, when we were, before we started recording and when we were preparing, I was saying that I, I have heard from a lot of parents lately who have, um, who believe that really people will not come to accept, um, their son or daughter, that the community is not a place of belonging. Um, that really the relationship between the parents and the child is the only, um, possible or likely freely given unpaid relationship. And that, and those parents, um, are, um, really looking to the service system as being the, the sort of infrastructure that will keep that person safe, um, outside, you know, outside of what the parents can do and when the parents no longer can.

Genia:            And I think that, and, and it just makes me very, very sad. Um, I think that parents are not wrong, that the world is, you know, not a friendly place that’s designed, um, and, and really kind of, it’s not designed to be easy to be accepted and to belong in our society. And it’s not something that, um, gets taught or really thought about despite a lot of the kind of rhetoric that, that we have in, in North America. Good rhetoric, I think, but still rhetoric around, you know, accepting differences and, um, and that kind of thing. I think there’s still, um, not a lot of really good practical, um, encouragement around how do, you know, how do you do it? So I don’t think the parents are wrong in their recognition of that, but I do think that they are mistaken to believe that there is no potential within community to find places of belonging and, and relationship, um, in the lives of people with disabilities. And, um, so that’s what, that’s, you know, what I want to talk about today is the capacity for community and the capacity or the capacity of community, sorry, in the capacity, um, for relationship in the lives of people with disabilities.

Dave:             Right. Well, that’s great and I totally agree with you. It’s not about parents being wrong. It is absolutely true that the way that our society has, um, has structured itself is, um, by design exclusive. Um, and I learned a lot of this when I was, um, working in the education system with Marcia forest and we were bringing this radical notion, um, of children going to school together. Um, but the, the truth of the matter was, is that the education system, um, was not designed for those children to be there because the education system in fact was designed to stratify society. Um, it was designed to figure out who were the kind of academic folks of a certain type of learning, who were the workers, who were the laborers and who were going to be the, the, the discardable unemployed. Um, I mean it, that’s just the way the system has a whole, was structured in the, in fact, the whole idea behind IQ testing was to create that stratification and to determine which strand you are going to be a part of and then to educate you accordingly.

Dave:             And a lot of people that were in the strand that was below even the unemployable discardables. Um, and that’s, that’s where developmental disabilities fell in a lot of the time. We know. I mean this, that whole mode of operating, which still exists a lower is just not, so the fact that that’s the case, um, the fact that the medical profession focused on the, I mean, the problem with medicine is that it’s actually not the study of health. It’s actually this study of disease. So it actually knows very little about health, um, because it pays attention to the disease part of stuff. But as a human being, the way the, as a biological being, the way that our bodies work is the things that work, enhancing the things that work in our bodies actually helps the things that don’t work. So, but the medical system was focused on all of this stuff about, you know, specialized problems and we get it narrowed down to which, which particular syndrome, which particular pool, all that kind of stuff. I’m getting someplace, but stop me if I’m going too far off on.

Genia:            It’s okay.

Dave:             But the, the point of all this was that the education system and the medical system, we’re actually not designed for this idea of community and to be apart. And what Marsha was doing was saying that, and along with the allies of those parents were saying that this school, this classroom could be better if we could welcome and include child. The whole class would be better.

Genia:            Yeah.

Dave:             Um, as a result, because they, we would be forced not to look at a category, but to actually look at a child as a individual being who had all kinds of things, strengths, capacities, gifts and needs that needed to be attended to. But we could be intended. And so I’m going to bring it to, it always strikes me as an interesting thing. During the mid 1980s on the education system, what Marsha was working on was the notion of integration. That was the language that was being used at the time. Thus, the integration action group was formed, this group of parents. Um, in the late 1980s, we discovered that there were problems with that within the United States because integration was being quoted, segregation and segregation had this painful history in the United States of busing and black, white. It was a very tremendous, tumultuous times. So a group of people gathered at Frontier College where Jack Pearpoint was the president of the college and John O’Brien, uh, in, uh, was a part of this, um, and invited a bunch of people who are all influential in their writings, um, to come together and talk about new language.

Dave:             And in August of 1988 at this meeting, it was a bit of a conspiracy to decide from this day forward, we will all use the language of inclusion and not integration. And John, who is a brilliant philosopher, um, writer reader, all kinds of stuff brought in the etymology of the word inclusion, which actually comes from Latin roots, which means to close the door behind you. So to actually allow people in to close the door, which meant then now what do we do? How do we figure out how to make this work? And that was the idea of inclusion was this idea that we would all be together. And then for our own both, not only survival, but for our own growth, which, you know, teachers were inspired to do, was to help children to grow. How are we going to make it so that all of these children could grow?

Dave:             Um, that was really the, for the teachers that got it for the principals and the educators that got that, how are we going to make everybody possible for everybody to grow? And that’s where these planning processes of bringing the children together to figure out, and the children always found a way to find out the value in the other children. Um, it wasn’t there. So, so part of it is, is that, that, that you have to be all together in order to figure this out.

Genia:            Right. Yeah.

Dave:             Um, but the other part is, is that the children never focused on the problems. They focused on what the children had to offer. Um, and I’ll tell you two stories that relate to that one that I was involved with. Um, and it was about the, about looking for the gifts, which I think children inherently do that. Children are not into this kind of stratification thing. They just see another kid and they’re kind of figuring out, well, how do I relate to this kid? You know? Um, and, uh, so, um, one of them for me was, uh, I, uh, a grade 8 classroom in Lindsay, Ontario and, um, they were the Catholic school board there was trying to figure out how to do inclusion, how could they make it possible for kids to go to school. And up until that point they hadn’t been, they had had some center based stuff. Um, and in this classroom there was, uh, uh, well prior to the classroom there was a young boy of grade 8 age, um, named John David who, um, has cerebral palsy, didn’t speak much, um, could walk, but had to wear a helmet because he also had seizures, but he would also fall.

Dave:             Um, his gait was such that he would fall. So, um, he was coming to a regular grade 8 classroom for the first time in his life. And a teacher who had never had it, kid like this in his class and a school that had never had business class. And we worked with the school. And John David had an incredible spirit. Um, he had a great big smile most of the time. Um, he was enthusiastic. Um, he wanted to relate with the kids in the classroom in spite of all the barriers. And that wasn’t his thing. And over time, the teachers started to recognize this, that, um, John David had a lot of gifts and he started to notice that his class was a better place because John David was there. Um, and part of it was, is that it changed the focus for the kids in the class. Um, they were less, they were starting to shift in their focus.

Dave:             And one of the examples was a young boy named Mike. And Mike was in a, a family that had gone through divorce. Um, and so he would spend his weekends going to one or the other parents, like you’d be at one house with the other. And often when he went to one of his parents and, um, I think it was his father’s, um, he would come back on Monday morning and he would just be distraught and, um, you could feel kind of angst that he had. And you know, it’s hard to know exactly what that was, you know, all that. But it was a kind of pattern. He would show up this way. And when after John David became a part of the classroom and really became someone in the class, the kids had really gotten to accept as a, as a cool kid.

Dave:             Um, what the teacher noticed was that every Monday morning after this experience of going to his dad’s, Mike just naturally gravitated to spend time with John David. And it kind of eased Mike back into life in the classroom. And, um, so I learned that the reason why that was, was that John David had shown up, but what he brought forward was not as problems. You know, he would fall all the time, but he would get himself up, um, and he would smile and he would want to be your friend. And, um, so the way he showed up and the way the teacher embraced that, um, and therefore the kids in the class also embraced that idea. The focus now was not about John David’s problems. It was about we’re glad he’s here. What does John David need to be able to do what we’re trying to do? Um, so does that make sense?

Genia:            Yeah, it does. Yeah, it does.

Dave:             So, that’s just one story. The other story was a story that, um, uh, uh, Patti shares of a guy named George in the United Kingdom, um, with Patti’s previous husband had, uh, uh, Ken Job had been doing some work with families over there and, um, uh, George was somebody not unlike Judith who could only sit still. Um, and in his later school years they were trying to figure out, “So what can George do when he leaves here?” And he didn’t speak. Um, and um, so they had a circle gathering to plan for, you know, “What are some ideas about what George can do when he leaves here?” And, um, so they put this to the parents, you know, “What are, what do you think are George’s strongest gift?” And the parents were really struggling because for them, most of the time George was not moving, he wasn’t speaking and all this kinds of stuff.

Dave:             And they, the group of that included some educators and others were there and they were, all the adults were a little stumped. And then finally one of the kids in the school, um, piped in and they said, “Well, you know, George sits still better than anyone I know. He actually just sit still.” And adults are gone, “Of course he’s, you know, he’s, you know, he’s quadriplegic. Of course he’d sit still.” And they said, “Well, what could he do?” Well, artists often had people model for them. And sitting still is a real gift for an artist to have a model that stays still. Um, and so they started to get George involved in that. And George became a model for artists who were painting and sketching. And then as time went on, they discovered that the, that George also had the softest hands cause you couldn’t use them.

Genia:            Right.

Dave:             Um, he had the softest hands and he wouldn’t move. So George became a model for Kamay soap and his hands were on billboards around the country holding the bar of soap because he had these beautiful soft hands with this bar of soap. but the point of that story for me is it’s all about how you look at it. Um, and everything has the potential for, um, being a gift. But it’s only when we see it in that way and we then can actually find the right place that this, that this works. So, so tell me more that you want to know so I can figure out what next to talk about.

Genia:            I want to talk about. I want you to talk about what, where parents can focus their attention in order to sort of bring forth the capacity of community to be a place of belonging for their son or daughter.

Dave:             Well, the, the first thing is, you know, one of the difficulties for parents who have a child that’s born with all the anticipation of somebody coming into their life and then all of a sudden or gradually over time, they start to discover that things don’t work the same as what I was expecting. And the world starts to respond to their child differently than they were hoping or imagining. And it’s a pretty scary place to have this feeling like there isn’t a place for me. So it’s, it’s a really painful experience for parents to be disillusioned, um, in those early, very early moments in years. Um, to discover that what I would hope is that my child could be loved as I love this being who I don’t even know yet. Uh, I don’t know what they will become. I don’t know who they’ll become, but I loved them, you know, as the starting place. Um, to then start to be disillusioned by the fact that prejudgment shows up really quickly in their lives and it’s really a painful story for parents.

Dave:             Um, I think the parents that I’ve come to know over time who have done best with that are the ones who realize that there are two ways, um, to see and one is to see the gift that is coming to their life and kind of want to grow and amplify all that is good. And the other is to focus on the problems that show up and follow that path on my problems. Now there is a bridge where the, the parents who survive best are the ones that use the resources of the problems. I had to actually support the, the gift and capacity side, but you do have to realize that there is a kind of set of choices that are made to you early on. And mostly their choices of attention. Where am I going to focus my attention? And we all have limited amount of time and so we’re always being called, our attention as being called all over the place. And the medical profession in the education system and the service system all are calling our attention in a certain way to focus on this problem element of life. And a parent has to always have to say, has to find a way to listen to that.

Dave:             To the degree it sounds like there’s something valid in it to actually always bring their attention back to this thing over here, which is this life, this potential, this gift that is the person that I love and how do I actually bring forward that gift into the world? How do I help my child actually find their place? Not by looking for their support, but by actually bringing forward what they have. And John McKnight, you know, many 25, 30 years ago was the one who um, really introduced this kind of framing to me with his, again, the video is available through inclusion.com – the Inclusion Press. Um, everyone has a gift and assists this idea that in community what your problems are aren’t worth anything in community. The only thing that’s valuable is what do you bring. And that’s what a parent, if a parent is imagining that there’s a time down the road where their son or daughter is going to be on their own steam forming relationships, the focus has to be from the time they were born.

Dave:             What do they have to bring? What do you have that others will find valuable? So you have to show up and you have to show up in a way that you’re bringing forward what you have to offer. The role of a parent and the role of people who end up in a supportive nature is how do we help people to actually find what they have to offer? And to think about where, what they have to offer or bring value to others in life. And that’s a radical shift. That’s just, you know, many, many parents I know because their attention has been called by the education system and by the medical system, uh, and the service system, their attention is just gone to, well, what do I have to do to get these resources right. And that system, which is really probably one of the most criminal and painful stories is that in order to get resources to support our children, we have to describe them in the most fundamentally awful ways. Otherwise they’re not worthy of [inaudible].

Genia:            They’re not eligible. Yeah. Yeah. I have, yeah. I have a few thoughts, um, very quickly just that idea that you’re talking about, uh, that there are two paths. One is sort of needs based and deficit based and one is gifts and contribution based. Um, but that there is a bridge. I think that’s really powerful because it, it, um, it’s a, it’s a great, um, accurate kind of visual, um, model really for, for this. And I, I think, you know, it doesn’t, there’s no denying that there are needs that need to be met, um, and support that is required. And, um, and that, you know, like, I’m really glad that, that the, um, doctors and teachers and therapists are, you know, figuring out some of the things that they’re figuring out because that benefits my son, you know, like the being able to say, “Okay, great, now we know how to, how to help with that”, benefits my son.

Genia:            But the question for parents is, um, the, there is whether, you know what or not there, parents are deciding what’s the point? And is the point, the deficit pathway and the needs pathway or is the point, um, the gifts and contributions in life and community? And then the, um, you know, the attention paid to, to the, um, needs and, and deficits really is, is as a tool in order to serve the actual point, which is a life of belonging and community. And then the other thing that I was thinking about was just, um, when Will, my son was, um, young in his first six years in particular. He still has, um, lots of medical complexities, but he was really unwell a lot of the time in his first six years. And when he was, um, in his first two years, I remember, well, first of all, he was, he was sick all the time.

Genia:            He was, um, he slept a lot because he was sick all the time. Um, he was really limp. Um, you know, he had both low tone and also just felt terrible all the time. So he was really limp. Um, you know, he couldn’t, he couldn’t do any of the things that, that, um, other, uh, you know, his, his peers could do. He couldn’t sit up. He couldn’t hold his head up for very long. He couldn’t do any of those things. Um, he couldn’t easily play with the toys or, you know, do any of those things. And, um, and I spent a lot of my time during that period of his life keeping him alive. Sure. And, um, and that, you know, we’re talking about parents making a choice here. Just want to acknowledge the, the focus on keeping him alive was required in order to keep him alive. Right?

Genia:            But I, I vividly remember my sister dragging me to the early years center to these mom and baby, you know, things. And I hated them because, um, because I could feel everybody’s sort of observation that I, you know, here I was with my sort of limp noodle, um, son who was really, you know, not, not able to do all of the those things. And I was exhausted and I was, um, you know, like just, it was hard and being placed in the center of community, um, of our sort of peer group of moms and babies didn’t feel good to me. Um, and uh, and it made it, and it highlighted for me, I remember so clearly that the feelings of being there, um, highlighted so clearly the, the sort of deficits. And then later in Will’s life, um, I was putting together photos, uh, you know, because I certainly wasn’t putting together photos at that stage in life.

Genia:            Plus he was the second kid and they never get a good thing, never get a good baby book. Um, but I was, I was pulling some photos. It was actually for a, for advocacy project that I was doing it because I was trying to convince the doctors at, at the pediatric hospital that they shouldn’t keep offering me to let them die. So that’s why I was actually pulling the photos together. But what was really profound for me when I pulled those photos together was how many photos I had of Will during his first two years with clear focus in his eyes, you know, like really present with what was going on and how few of my memories of those first two years include that version of Will. You know, and so, uh, I don’t know how or whether I could have shown up differently in his life during that time in, in the same way that I don’t know that I, you know, I, I don’t feel like I have a solution for parents who are showing up in that way for their kids throughout their life.

Genia:            You know, I don’t have any commentary on that. I don’t know how or if I could have done differently or better, but, um, I know for sure that Will didn’t show up in those playgroups the way he could have if I was showing a, if I was seeing him, um, in, in all of, uh, seeing the version of him where he, he was really, um, there and had something to, to offer with those, you know, soft blue eyes with his big long lashes and, and his, um, the great effort he made during that time when he was so very ill, uh, to, to really be fully present with us and, and with the other kids and with what was going on around him and, and to be learning and growing as, you know, in these little slivers of time when that was possible for him. Like I, he missed out because, um, because I could only see at that time that one version, um, of him, even though that version is real.

Dave:             Yeah, yeah. Yeah. So that’s it. It strikes me as a really interesting thing. Um, at any point, um, a parent has to try to come to a focus, which is how do I use resources to benefit my vision of my child and the life that I would hope they could lead. Um, versus how do I get used by or consumed, consumed by a system that’s designed for all of this. So when you’re in crisis, which will was in crisis, I mean, staying alive is the thing, right? That’s like, it’s got your attention. Um, and yours as a parent, the struggle is where do I go to find a way to stay alive and then, well, this is not my lifelong vision for this is like we’re in crisis at this moment. Issue is what do we do now for this moment and how do I use the resources available to that end.

Genia:            Yeah.

Dave:             What happens though is for a lot of parents that I’ve seen is that, um, the attention becomes so much on the, the resource like, and what do I have to do to get it? What do I have to do to relate to it? What do I have to do to kind of interact with it that we actually missed. The fundamental story that’s going on at the same time is that there is this person, this child, Will, who is actually having to survive with Herculean effort on his own. Like what is he doing to actually survive and adapt to the circumstance? And what happens is we actually see our children sometimes as being helpless, but they actually aren’t.

Genia:            Yeah.

Dave:             We’ll have to do stuff in order so he becomes lethargic and all that kind of stuff because that’s what he needs to do to actually survive at that time. And so the lens of, there’s still, even in the worst of circumstances, what I have learned from people and that was that classroom in those swimming pool too, was that these people are who they are and they have resilience to get through each day in spite of what’s thrown at them. And that I’m just going to talk to them now because as I had my, my thinking is right here is that this is the love story of Linda till and Becky Till. Becky, who at the time was 10 years old, um, and to any observer would have been seen to be malnourished and her growth severely stunted, um, at that point.

Genia:            Yeah. And in fact she just, uh, she was severely malnourished. Like it wasn’t just a perception. It was that [inaudible]

Dave:             Anybody who saw her would know that.

Genia:            Right. Yes. Yup.

Dave:             And she would, um, and so, and so she’s 10 years old surviving in those conditions before she meets Linda Till. So already she has 10 years of surviving an incredible amount of things, including the loss of family. You know, she doesn’t have family, um, uh, that she’s experienced in relationship with and she’s a child, but 10 years old, she’s, and still in her eye is that survivor. And not only that survivor, but this beautiful soul that Linda Till can see, not simply because she has compassion for Becky because she actually had compassion. Linda had compassion for all the children. She didn’t fall in love with all of the children. Like she did with Becky Till, um, to the point that she wanted Becky to come and live with her and her family. But that was on Becky’s steam, that that love was made possible because Becky, in spite of all that had come our way, could still exude this life force within her. And that’s the people that we have to look to and kind of say, “My God, in terms of survival, if you want to learn about survival, meet somebody who’s had to endure all of these things.” That’s where you want to learn about survival. Um, so.

Genia:            Yeah. And um, and not, I also think, you know, it’s, it’s not about, um, it’s not just about survival. Like it’s not that people, you know, people are not just, um, surviving or not just wanting to survive and be resilient just to in fact be biologically alive. But people are seeking, um, seeking to be connected to other people, you know?

Dave:             [inaudible]

Genia:            Yeah. That’s the, that’s the, uh, that’s the drive. And just for people who, um, don’t know, we, um, Linda Till, that Linda Till and Becky Till’s story is, um, episode 10 and 11 of the podcast. If people want to go back and listen to that remarkable story. So, um, Dave, where have you seen or experienced, um, about the potential for community? So, you know, we’ve talked about, um, things in sort of a, almost like a theoretical kind of kind of way, but, um, you know, parents are experiencing, um, parents are experiencing the reality of rejection, um, and coming to the conclusion sometimes that really, um, it’s not, it’s not possible that people with disabilities don’t find belonging in community and they don’t find relationships in community. Um, and I’m wondering if you can just speak to your experiences of people, in fact finding that they are, they do find places of belonging and relationships.

Dave:             Well. Um, I just have to say at this point, I’m spending less time with young families now and, um, not because I don’t want to, but just most of the work is that, um, where would people who are at past that 21 year old, um, space stage in life. Um, but, in general

Genia:            Can I interrupt you there and just comment on, on that in particular. There’s so often a crisis after the age of 21, I think directly as a result of what you were saying earlier about the focus of the medical system and the education system. Um, because people are basically sluiced from the time they’re born into the medical system and the education system, um, which isn’t broken. It works exactly the way it was supposed to and kind of pushes people out the other end. But if you’ve only, if you only start thinking about this after your child’s, um, the kinds of things we’re talking about now, after your child has graduated from high school or left high, then you are usually you’re doing that because you’ve discovered they have no life. Like there’s nothing going on for them. And you’re trying to figure out, you know, how does this, how does this person meaningfully spend their time, which is one of one of my most powerful drivers for encouraging families to, to start thinking about, you know, who is your child and where are the places of belonging and where are the possibilities for relationship in their life during childhood? And not waiting until you discover it 21 that things are terrible.

Dave:             So, yeah, no, no, absolutely. Um, I think the thing, the problem for, here’s another one of those decision points for families. Um, if you’re going out into the community looking for support, it’s going to be a challenge because the assumption of looking for support is that I’ve got a problem that I need support with.

Genia:            Right.

Dave:             So right from the very beginning, I’m presenting myself as a problem.

Genia:            As a problem. Yeah.

Dave:             Does that makes sense?

Genia:            Yeah.

Dave:             Um, so, so that’s a choice that families have in stepping into the world. Am I going up there expecting, I’m going to get something from this thing out here. And in that, that’s when people often experience a lot of rejection. And a lot of disappointment, right? I’m not getting what I actually need. Um, for the idea of social capital, um, and the idea of community, the starting place is actually getting to know your community. The starting place is actually knowing the world that you want your son or daughter to live in. And this again is one of those challenges and one of those decision making points for parents. How could I actually get to know the world that I want my child to live in when I’m spending so much time sucked into this thing about the service system, about the education system, about the medical system? I’m spending all my time there. I don’t have any time to get to know this place that I want my child to live in.

Genia:            Right.

Dave:             Let alone the other element of this, which is, um, this stage in history where we’ve actually decided to design our communities in such a ways that we actually don’t need to get to know each other. Um, there isn’t a reason for doing it apparent. It’s not, it’s not apparent. You have to go looking for it if you want to find it. The irony of that is that if you go looking for it, you’ll find it everywhere.

Genia:            Right.

Dave:             But you actually have to do that work. You have to get to know it because the starting point for bringing a gift into the community is to know the best place to bring the gift where it will be wanted and needed. And you can’t do that if you don’t know the places. Does that make sense?

Genia:            It does make sense. Can you, can you talk more about that?

Dave:             So if our, if our children are gifts, the first thing is apparent. First job as a parent is to get to know what that gift is. What is that gift? Because we’re the first people who get that experience, right? And every parent knows that each one of their children has a different gift. Like it’s just so obvious, right? That you could talk about each of them. So that’s the starting place. You’ve got to get to know your gift. But then if you’re looking to a world where your child is going to show up and be valued and be valuable, you need to figure out where in the world would that gift be valuable. Right? You know, in the John David’s story, it became very obvious that in that classroom, John David’s value showed up with Michael coming up the weekend. But you know, so you have to figure out that. But in order to do that, you actually have to know that other first. So that’s the starting place is actually coming to know that community that you want your child to be a part of. Um, and how do you do that? Well, you’ve got to figure out what, first of all, you’ve got fear of what that community is.

Genia:            Yeah.

Dave:             That is one of the challenges is that we don’t, we live in these suburban areas that have kind of like this wasteland of what is this?

Genia:            Yeah.

Dave:             I don’t know. There’s no identity to this place. It doesn’t, it looks like the same suburb in another, outside of another city. You know, it’s like, what is it? So you have to look for that in the first place to figure out that. And that most often means going first to find your connection in that community by finding the community that you would love, that you would love to bring something to. And it’s in that set of relationships that you’ll start to discover the other communities that are there. And as you discover those places, then you’ll discover where your child could show up and be valued because of what they’re bringing to this. So I’ll tell you a story in a whole, I’ll actually forward you too if you don’t know her yet.

Dave:             A woman by Jenny, by the name of Jenny Trot in the United Kingdom in Scotland, um, has started a, uh, um, a YouTube channel of podcasts that she’s done that both Patti and I have, um, done for her as well. But she has the story and you’ll find this on hers, um, her son, um, James, uh, has a, um, he requires a usable wheelchair. Uh, he doesn’t move much on his own. Um, but his father is a runner, like his father likes to go on these runs. And then they have these park runs throughout the country, um, throughout the United Kingdom. Um, and um, they, they have these volunteers that organize it and kind of hosted and do all the kind of stuff to take care of the runners and all this kinds of, this is [inaudible] event. It’s a Sunday park run. It’s all over the place that they do this kind of stuff.

Dave:             And his dad is an active runner. He actually loves to run. So first tip dad goes out to find the place that he wants to know about, you know, all that kind of stuff. And he discovers this park runs. And um, the family would often come to these park runs to kind of watch dad run and you know, be a part of the community that’s gathered around these runners, um, out there. And then at some point they’d take a look at this and kind of say, “So, how could James be a part of this?” And they, cause he loves being there. He loves seeing them. And they actually came to this place of deciding that James could be the person who is at the end of the run congratulating the runners as they come close to the finish line. And James can’t do a lot of movement on his own, but James will do a high five.

Dave:             So every runner coming through James is doing a high five with the runner coming through. And um, if you get a chance to see that there’s much better done. But the point is, is that what’s the community that me as a parent wants to come to know? And in that community, what’s the place that my son or daughter, what’s the best place to go for them within that community and what could they offer in that community? And you’ll hear actually, um, the runners talking about how inspirational was to have James at the end of the run because some of it actually is implicit in James’s circumstances of being in this big wheelchair and being 16 year old kid and um, or, uh, is the sense of teams has had to go through a lot to get to this place in life. So to have him there smiling and cheering us on is inspirational to them because even though he’s not running, um, he actually just to get through has had to do a lot to get there. And they recognize that in their effort that they’re exploring in their running and all that. And so his high five means something to them. Does that make sense?

Genia:            Yeah. Yeah it does. And I think

Dave:             But that can be different everywhere you choose because of where you as a parent decide to invest yourself in community.

Genia:            Yeah. I, I think, um, also the, the thing concepts can be applied to communities or to spaces that, um, don’t necessarily relate to you as a parent. If you’re clear about where the interest in the gifts are of your son and daughter. What I think is a really important takeaway, one of the really important takeaways from what you’re saying is that, um, you need, um, a gatekeeper to help with the entry into, into community. And so as a parent it, it might be you, um, so you’re getting involved in community and, and meeting those people, um, and, and understanding that little micro community. Um, and all of its rules and quirks and you know, so that you can help, um, your son or daughter to, to, um, truly belong, but it may be somebody else as well. So I know, you know, in Will’s life, the running is a great example.

Genia:            Um, so Will loves to move fast and he’s quite adventurous. Um, and pretty much anything at high speed is, is, you know, good for him. Not so much for me. Um, you know, I’m a, I’m a really unfit, middle-aged, overweight mom who spends more time in her head than she does really, you know, moving her body. And, um, so in order, so I’m not, I’m, I’m going to be really ineffective in any of those kinds of communities or spaces that, um, are kind of high speed, adventure kinds of spaces. Um, but, um, but we have used that, that knowledge, you know, that about how, about gatekeepers essentially. Okay. Who, but who is? You know, so Will, has received support from, um, uh, a few people in this regard. But, um, one, one story that, that particularly speaks to that is when, um, Doug who was a supporter of Will’s and is now a friend, um, decided that, um, he thought that Will would really enjoy soccer.

Genia:            And, um, so he submitted, um, on Will’s behalf just submitted the registration form, um, to the, uh, soccer league in our community. And a couple of days, and this was fairly last minute and a couple of days before the league was to start for the season, um, we got a call saying, “Ah, could you, would you mind coming in for a meeting? You know, we’re, we’re not, we’re not really sure. And so we, you know, we, we, Doug and I both went and, um, and Doug is an athlete. You know, he is a, um, the high level lacrosse player and he’s a power lifter and he plays hockey and he plays soccer. And, um, he, uh, and, and, and he’s really good at all of these things, you know. And so Doug accompanied me to this meeting and, um, the, the, there was a large group of people from the soccer league there and they were very afraid of a few things.

Genia:            They were very afraid they would say something wrong and offend me and that I would get upset and probably accused them of not being welcoming or something. They were very afraid that Will, we’d get hurt. Um, and they were afraid that the other children would get hurt or that there would be issues with the, with the other kids. And so they had devised a plan where, um, Will would play only, Will would basically have a zone on the soccer field and nobody would be allowed within 30 meters of him. And that the zone could, the zone could move. Now I know that’s not how soccer is played.

Dave:             Yeah, that would be my thing.

Genia:            Yeah, that’s, I know that that’s not how soccer would be played, but, um, but I don’t, I’m not a soccer player, but Doug is. And so Doug was able to speak the language and he was able to, um, problem solve with them from the perspective of an insider. You know, and I can’t ever bring that.

Dave:             Yeah, absolutely.

Genia:            No, I can’t ever bring that to that community. Um, and um, anyway, so Will has been playing soccer without a zone now, um, for, for a few or a few years in our, in our, um, community soccer league and Andy beyond the getting through the, through the administrators and the coaches and the referees. Also having somebody who understands what it means to be a team member has been really, really important and um, and really effective at finding, um, belonging for Will as a soccer player. Um, and as a team member, even though physically he can’t, he can’t do most of the, if you made a list of all of the things that, you know, soccer players do, he can’t do most of them. But he still found that place of belonging, um, because he had the assistance of somebody who deeply understood what it meant to be a soccer player and a team member.

Dave:             Yeah. Well, it’s, a lot of this is about really taking a look at your intentions of what you’re trying to do and then figuring out who are the right people to show up in the right place at the right time with the right offering to actually make it. Like it just does, it just requires that kind of intentionality.

Genia:            Yeah.

Dave:             It was by design, it’s all designed to separate things out, right? So for you to do this, so as a parent, you’re trying to think of the right place, the right time, the right offering in this, but sometimes you have to think about the right person to be the one that’s going to make that intro into that particular world. But that’s why your world is so important [inaudible] that you know, are so important because you may not be expecting Doug to go all the time.

Genia:            Yeah.

Dave:             But it’s once a week that he goes to, you know what I’m saying? Like you find the right time for the right person in the right place. Um, and it just requires that you have to do work. And it’s, I’d say it’s unfortunate. And on the other hand, it’s actually what all of us have to do. If we want, if we want a meaningful life, we actually have to think about where are we going to spend our resources. Um, and cause otherwise we find ourselves somewhere down the road and you, the amount of information out there that is talking about loneliness is the next thing that’s killing us. That didn’t just happen. You know, the world is structured this way unless you take it differently. And, and that’s, your children are simply calling you to do what all of us must do.

Genia:            Yes.

Dave:             But in doing that, you are going to be stronger because you were going to have learned from your child what it takes to not only survive but thrive in this world. The lessons that you learned from Will are actually, if you apply them to yourself are going to make you richer and healthier and all of that stuff. And so it’s sometimes sounds like we’re expecting parents to take on an extra burden in addition to the education system, the medical system, the dealing with being afraid. My child’s going to die, all this kind of stuff, but all we’re, all we’re really saying is it’s the first version that you have to actually try to stay focused on, you know, and how do you do that in order for you to not only survive but for you to thrive and your son and daughter just do that too.

Genia:            Yeah. And you, by the first version, you mean the version of your child

Dave:             Of figuring the right person, the right place, the right, you think of your intention. What is my intention in life? And as I always remember, you know Rose Galati, a member of the integration action group who was an educator as well and was trying to have her two daughters included in the education system. She said, you know, if, if I want my child to end up down the road in the community, embraced by people around her offering things to the world, why in the world would I want to educate her separate from that world that she wants to be a part of? Like, you know, you have a vision of where you want ultimately this to be. And every parent has the vision of I want my child to be surrounded by people who love her, um, who love him.

Dave:             I want him to be valued for who he is down the road. You have to come back to that focus all the time and say, if that’s what I want, how do I use what is available to me? Not how do I get consumed by it, but how do I use it to actually make that possible? And that’s really the challenge and it is a huge challenge. Just like it is a challenge to be, um, a black man in the United States of America, you know? Um, you know, it’s like these are not disconnected things. Then, when the world is designed in such a way with prejudicial systems and all that kind of stuff, the survival and the actual resilience to make it through to a bigger and better life. It’s calling upon us all, but we need to see ourselves in that light though. We need to see ourselves as a part of a bigger societal change in our small way.

Genia:            Right. Right. As opposed to our experience of community as rejection, as a sort of place of rejection and not a place where belonging is possible. Our experience of that is not in fact a statement of fact, but more of an experience within a larger context of, of, you know, um, the, the space in place and time that we exist within our society. Um, but it doesn’t in fact prove that society or our communities, um, are not places where our children can, you know, find friendship and relationship and meaningful lives. Yeah.

Dave:             The, I mean, your children, in the right context, your children can build, I often say that all of us are born into a family, whatever that family is, but we spend the rest of our lives creating family. And your children have that same goal and purpose in mind is what’s it going to take for me to create the family down the road. And if we just stay focused on that, um, and realize that it’s there, you know, the, it will show up when we, when we bring ourselves forward in a certain way. And this is the challenge for parents who are exhausted from these other battles that goes on. How am I showing up in these other places? What am I bringing forward and what does that say about my son or daughter? Um, if I want them to be accepted, telling the world all the worst things about them isn’t gonna do it.

Genia:            Right.

Dave:             So we have, it’s part, it’s not the blame parents for this. It’s just that if your intention is for your child to be able to grow in relationship up there, then the relationship part, the only part that you have control over is what you have control over and how you, how you come forward and how you present yourself to the world is going to make a big difference.

Genia:            Yeah. In a recent episode of the podcast, Janet Klees was, one of the pieces of advice she had was make a list. Um, I think, I’m pretty sure it was, Janet said this, make a list of all of the really wonderful things about your child that you wish other people could see and then talk about them all the time.

Dave:             Yeah, yeah, absolutely. Yeah. But just last year at the Summer Institute, uh, John McKnight was there doing a little short conversation with people about something that, um, he was thinking that communities could do and they could do this kind of surveying of all their neighbors and they could go around and say, what is your gift? That’s the thing that your parents knew when you were born and they would still describe you as this. It’s the thing you’re born with. It’s the you, it’s the essence. What are the things that you’re really good at? Now, what are the things that you have skill and capacity to do? Um, what are the things that you’re actually good at enough that you could teach somebody else? And what are you passionate about? You know, I think if, if parents spent their time building that list for their children and um, having that list to go into the community, um, that would help them find a way. Because then what you’re looking for is not the place that’s going to support me, but the place where my son or daughter can bring forth something of value and then fall in love with people from that place.

Genia:            Yeah. Yeah. I think that is a perfect sort of message to end on.

Dave:             Great.

Genia:            Dave, thank you so much.

Dave:             Yeah, it’s great to be here.

Genia:            Thank you.

Dave:             All right, take care.

Genia:            Thank you so much for joining Dave and I in that really great conversation. If you want to continue the conversation, I’d love it if you would join us in the Good Things in Life Podcast Facebook group. It’s a closed group, but you can easily find it on Facebook by searching for Good Things in Life. Or you can head over to the website at goodthingsinlife.org and there is a link from there. Let’s keep talking. Until next time. I hope you have a fantastic week. Take care.

Thanks for Listening!

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Special thanks to Dave Hasbury for joining me this week. Until next time!

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.