In this podcast, CNAC Director of Learning Petra Eperjesi sits down with facilitator Margaret Fraser, who is also the co-founder of Metalude, a Montréal-based play and inclusion consultancy. They discuss accessibility and inclusion in the Forest/Nature School context. Margaret challenges us to reflect on our relationships with disability and internalized ableism, how we think about disability, and the language we use to talk about it. We explore the differences between adaptation and inclusion, and Margaret shares concrete examples from her urban outdoor play program, The Lion and the Mouse, about building trust with disabled children and their families, and co-creating more inclusive programming.
In this podcast, CNAC Director of Learning Petra Eperjesi sits down with facilitator Margaret Fraser, who is also the co-founder of Metalude, a Montréal-based play and inclusion consultancy. They discuss accessibility and inclusion in the Forest/Nature School context. Margaret challenges us to reflect on our relationships with disability and internalized ableism, how we think about disability, and the language we use to talk about it. We explore the differences between adaptation and inclusion, and Margaret shares concrete examples from her urban outdoor play program, The Lion and the Mouse, about building trust with disabled children and their families, and co-creating more inclusive programming.
S4E1
Tue, Apr 25, 2023 2:53PM • 33:26
SUMMARY KEYWORDS
disability, children, support, person, people, inclusion, diagnosis, important, disabled, program, parents, learning, kids, access, group, conversation, experience, brains, world, activity
SPEAKERS
Margaret, Petra
00:22
Hi everyone, you're listening to the child and Nature Alliance of Canada Podcast. Today you'll be hearing Petra, our director of learning here at Siena speaking about disability and forced nature school. Petra was joined today by Margaret Fraser, a facilitator at sea dock.
Petra 00:40
Good morning, Margaret. Thanks for joining us. Can we start off with just introduce yourself and tell us about all the different hats that you wear?
Margaret 00:50
Good morning. My name is Margaret Fraser. I use she her pronouns. speaking to you today from - also known as Montreal, I have so many hats. Some days, I just don't know where to start. I will start with the hat I'm wearing most today. In this moment. I am the mother of a six year old and eight year olds, they both have a number of neurodevelopmental differences. I like to say we're a neurodivergent household. We don't we don't know what it is to be so called normal. Whether or not that exists. That's one hat that I wear often. I am also co founder co director of an organization called meta loop, where we facilitate children's participation in public life through consulting children's participatory projects, working directly with children through supporting freeplay projects, working with adults on on their posture in that context, as well as in supporting the development of child friendly and family friendly policies for cities. Yes, that's my very professional hat. I'm also a facilitator with Scenic for the forest school course, just how I come to know her lovely Petra here. And I'm also a part time student. I'm mad at you cam, which is the University of Quebec at Montreal scuttling disability and death studies.
Petra 02:23
Yes. And so this conversation came about, because several months ago, we were chatting and you mentioned some of the ideas that you're working with through that program. And as a mother, well, and as we were, we were talking, I was like, Margaret, we record a podcast because you are a wealth of information about accessibility and inclusion, particularly in outdoor learning environments. Because I met you when you were leading the young elastography the line in my house in Montreal, is that program still happening? Tell us a little bit of
Margaret 03:04
it's in a bit of a transition. The pandemic unfortunately, has not been kind with all the ups and downs. But one of the things I really appreciate and they work there is we found that there were already when we started, there were so many children and families who would say to us, like I feel great here, and I don't feel great in other places. And often we would get to know these kids. And over time parents might share with us, oh, well, my child has such and such diagnosis or my child is being evaluated, would you fill out this form, would you and they're the kinds of things where over time, we realized that such a large portion of our long time families are neurodivergent or have neurodivergent children. And to be clear, neurodivergent is that positive way to be able to say that your brain doesn't fit the so called norm. People are often perhaps more accustomed to referring to a specific diagnosis, neuro divergence, the movement that brings together all the different kinds of developmental diagnosis you can have and says these are part of, you know, just as we have biodiversity, amongst, you know, our living species on this planet. We have neurodiversity. So brains do come in all shapes and sizes. And that's a richness that we live with. Anyway, small parenthesis so that you could follow me here. But we know we started to see how many kids were neurodivergent how many access needs we were just in our daily work supporting and then did work with in our community and with our partners to be able to bring in place a shadow program so that those kids who were needing more supports while we were able to have another person present in the group, so that those supports could be more intentional or complete. And also a little Bit more invisible. Sometimes when neurodivergent children are without a support, well, the support need expresses itself as behavioral challenges. And that's a difficult stigma to break. Once that happens. Nobody wants to be the kid who hid. Nobody wants to be the kid who fights and we recognize that some often these behaviors come from frustration, because there's needs that aren't seen, there's needs that aren't being met in this context. And I'm seeing, particularly when you have had children and those young ages. And so having a shadow program that is bring another person into the group, who can specifically be working not just with the nerve with the children who have additional access and support needs, but also with the other children. To say, together, we will make this an inclusive space. And that's a that's a challenging work. I don't think anyone ever gets it 100%, right. But to have someone who can be there saying, I'm not in the ratio of hair right now. I'm the extra person who is here specifically to be looking at how is this group fitting together and making space for everyone. And that was a really rich experience we had that bear the shadow program for a number of years where I was at the line in the mouse. And it's something that started in part because well, like our children were in those programs and had those needs. And we it wasn't it wasn't created by me for them. But I could say they were amongst that cohort of kids who were so committed to being there. And who even on their best days did need support beyond what we were able to handle as an organization without extra resources. And so we got more resources.
Petra 06:43
Yeah. Okay, so this brings out so a number of questions actually, that just in this first answer that you've given, one is, I noticed that you said your children have neuro developmental differences. disability, and I've been learning I consider myself like very much at access and inclusion. 101 really at the beginning of my learning journey. And one thing that I've learned is that we shouldn't shy away from the using the word disability and that we don't need to use euphemisms because that implies this negativity about disability. So can you explain why in this situation, you said differences and not disability?
Margaret 07:33
I think the reason so in my, in my daily life, I would say I most often say neurodevelopmental disabilities. In this context, I chose to say differences, because I know not everyone who could be regrouped in this category of brains that diverge from a so called normal identifies with the word disability. So for example, I know a number of children who have a formal ADHD diagnosis, their families would not necessarily use the word disability to describe what's happening. And the word using the word disability, I completely agree it's really important not to use euphemisms not to shy away, you know, this disability is not a dirty word, I see that on T shirt like it very much something for us to understand here. And it's important to understand that how individuals use the word disability is in many ways. It's a personal decision. It's also a political one where we can get into it is so for example, the difference between saying, well I have disabled children and I have children with disabilities. For me, I would I have that same I have my two disabled children or I have two children. Sometimes it gets complicated to make the phrase in the exact way. But um, so that's two kinds of language, we have person first which is a person with a disability. And then you can have affirmative language, which is a disabled person or identity like identity first language, which is often considered affirmative in the sense where we're saying that that disability is such a fundamental part of who that person is that it can't be separated from them. So for example, you know, me as a white heterosis woman, I'm not going to say, I am a person with white skin. I'm a white person that changes everything about how I get to move through this world. And my kids are autistic kids, and that changes everything about how they move through this world. And so that's why in our context, we choose to put to use that identity first language because the autism and the person can't be separated, nor should they be In the way that we understand and experience autism, not everyone uses that same kind of language. And it's something that is really important to understand is that parents often have their own process they're going through and what their relationship is to disability, what their child's relationship is to it. And that when people who are not, it's a, you know, when you're first initiated into this world of disability, it's often by healthcare and school professionals who are there to help in a way that is about improving working on the capacity of the individual. And so that's where you end up in language that's related to diagnosis, you know, we're here to help this person develop social skills, we're here to help this person develop fine motor skills. So they have very clear diagnosis, that corresponds to what you'd call an impairment or a deficit in the person. So this person struggles with x, therefore I do Y. And that's how I interact with that person, that model. It's one that seeks to change the person, there may be situations where people feel that ultimately, there is something that bothers them that they do want to work on changing, I have a child who's now really proud to be able to write numbers that other people can read. So having support for developing a direct skill has been really important to him. And it mattered because it was a skill he wanted to develop in that moment. And not because somebody looked at him and said, your fine motor skills are terrible, therefore you must get better. He used an iPad to write and communicate up until he suddenly cared about being to write being able to write numbers on his imaginary Avengers spaceship, cardboard box creation. And now here we are. But that model of this is the list of things that are wrong with your child is often how we're brought into this as parents, and often how we first communicate about it with teachers, things like that. It's often starting from a deficit standpoint. But of course, as you get to know kids, every, every person is different. And no matter what diagnosis, someone may or may not have been given, we all have the parts of us that come alive in different contexts. And so another way that you can understand disability, and this is where we get more into this access, and inclusion is we can say, Well, under this medical model, where it's about the diagnosis and the skill that the person is developing, it's to say, well, how in the environment we're inviting this person to, and how are we bringing down the barriers. And so when we're talking about access and inclusion, it's about bringing down the barriers to participation, and saying, disability is not the problem of a disabled person, it is a societal problem. We all are participating in a world that's inaccessible in some way. And that's another way to look at it. As you know, we could say, well, if we're defining disability by by what, uh, you know, if you're looking at these deficits, this what what can the person do or not? Well, there's a school of thought that would say, well, a person in a wheelchair, if they're in an accessible environment where they're able to move around, then they may not be experiencing disability that day, because they're able to come to do all the things that they need and want to do in that day. However, as soon as that person is put in front of a set of stairs, they're in a position of disability. And that's where as people who are welcoming children and co workers into a space that will have access barriers, we can think about that as well. How much can and should belong to the person who's being invited into the space? And how much can I be mitigating access barriers ahead of time? Do we need to get to the top of the mountain in order for this to be a great experience? Maybe not. That's something I love and for school work is that when we focus on the process, well, then we can choose to be focusing on moving together, and how is this group participating together? Rather than saying, well, we need to keep the goals we always had, regardless of who's in this group, and regardless of what their access needs are, and then so that's the that's the sort of elements there and as we get to inclusion, we can go even beyond can the person show up even beyond can they get in the room? Can they understand the information? Because access is not just physical? It's also you know, are the are the is the information being given, being given in a clear way, step by step. Do we have visuals to support the words you know if someone if you have a deaf or some When with, with different hearing, do you have ways that you're communicating together all these these sorts of the access to the information, the access to the space to the activity, even once we consider that, that's where we can really dig into the inclusion is this a space where every person can be their full selves, where every person can really show up and participate and be part of that same group conversation. And I know sometimes the advice we're given is to adapt an activity that I really like to focus on instead of, you know, the difference between an adapted activity where we say, well, you know, today we're going up the mountain, for example, and this one child has motor difficulties. Therefore, they will have an adaptation, which is to take the bus up the top and meet us there because they can't walk. Well, yes, there is the moment where you're together at the top, but in the meantime, the adaptation has excluded that child from the group. So instead, we can look at okay, well, is that is the essential part of this activity getting access to the top of the mountain? Or is it living an experience of moving together of slow exploring of a group overcoming challenges and supporting each other, in which case, we can imagine a different way to frame it, that's more inclusive, that's we as a group are going into the woods today, let's see what happens. And having in your backpack, some tools that would be able to support this child, if they need some support, you know, sometimes there's wagons there's a there's even like, forced wheelchairs, there's, there's all kinds of things, it can be as simple sometimes as putting your slowest person at the front of the groups that said, they set the pace and they never get left behind. But to really when we get to that inclusion is to think how do we make this something where everyone truly has a part and is not, you know, we're not trying to fit a square peg in a round hole, because, well, the square peg should be involved somehow, you know, we say, or we just make a
Petra 17:04
I hear in this like a reframing where you started first talking about like this deficit model, or this medical model where something needs to be fixed, but some things only broke in, like you said, when the standard is making it seem broken, if the activity is getting up the stairs, then it becomes a problem, like you said, for the disabled person. But if we conceive of the activity, from the get go, as more universally accessible, and if we conceive of inclusion as thinking through the experience, so that everyone can participate from the get go, then it's a bit of a flip, isn't it? I feel like I'm not being nearly at all, as articulate as you are.
Margaret 18:07
No, but you absolutely got it, it's that flip to say, inclusion happens before, you know, it's it's planning that happens before people arrive. And it's a kind of dialog negotiation that happens as we are together. And something that I think is important to name in this is that there's rarely individuals and organizations and schools and you know, even like you're you're helping health professionals like OTs and things like that they're rarely 100% in one model of disability, but I think something that's really important is to think to yourself, Well, how am I looking at the situation of disability? And who's, you know, whose problem is that right now? And something I do often with my own kids, as we say, like, well, it's not really a problem, unless it's a problem for you, you know, for them as the people who are experiencing disability, if something feels like a problem for them, well, then it's a problem. And I know, for example, people, people who experience migraines, chronic pain, things like that, well, that, you know, the medical world has an important role to play for people who will say, Well, no, even if I don't have to go on stairs, even if everything is made, so that I'm allowed to rest in my day as I need to, as a person. You can also it's also very valid to say and I don't want to experience pain, and I do want a certain level of being fixed. You know, and, you know, I'm saying in quotation marks, but I do want assistance in those ways. And so that's where, say, relationship with disability is very, very personal. And it can contain that that political element. And I think, using language that we use, when we talk about disability, it's very personal and I think something we can normalize when we are speaking with children and families who have various experiences disability is to ask how do you talk about it? Just as we now ask people, their pronouns, say, Well, how do you, you know, how do you describe this situation? And and I've encountered parents who say, Well, my children aren't aware. And at which point, you know, then over time you start to realize, well, you know, they don't use the terminology of diagnosis, but they have their own ways of explaining things. I'm not sure if this phrase is used outside of Quebec, but it's used here a lot. Kids often describe ADHD as saying, my brain needs glasses, and they take a medication, that's glasses, and they, you know, they can
Petra 20:34
they? Well, that's because as you as I write, as an educator, in the classroom even more as a forest school educator, or any sort of outdoor educator, one of the ways that I can, one of the sort of concrete strategies I can adopt in being more inclusive is to be brave, maybe brave, my own discomfort and ask children and their families. How do you talk about this? What language would you like me to use? And I think I'll speak for myself. And I wonder if other people who think of themselves as being sort of early in this journey? I think the line between like, what am I allowed to ask about both in terms of like your needs, and how I can support them? How much am I allowed to ask about without sort of downloading emotional labor? And where else can I educate myself, to be prepared to receive a diversity of kind of ways of moving through the world, as you say, because I think there's an impulse to like, want to be prepared. And to think we need to know everything about how to support all different kinds of disabilities and needs. And then I think the the next step in that feeling is like, I don't know where to start. I don't know what
Margaret 22:07
Yeah, I hear that. I think so when, in my own work, preparing to welcome children with disabilities in outdoor programs, questions, I always ask that we have to sort of special specialized form. And actually, the first step was in our general registration form, it took us years to refine this, but to have a question that just says be the question says, Tell me about your child, because we would find there was lots of parents whose children ultimately would benefit from some kind of support, but weren't naming it because they were afraid it wasn't big enough, it wasn't real enough to merit intentional inclusion measures. So we started by in the general form, saying, Tell me about your child. And then from those responses, being able to say, it sounds like maybe your child might be someone who would benefit from additional supports, would you be interested to fill out this other form? And in the other forum, the first say, thinking back now I don't have it in front of me, but we'd say, you know, like, what does your child like to do? Like, how does your child play? So starting with that positive? And from there, so then being able to say, Does your child what support needs may allow your child to fully participate in this program? Or what, what additional supports? And that's a place where people walked in open up about, okay, well, they might need some social cues they might need, they may have hearing aids, they may have a mobility device, these are all sorts of little things that are come in there. And another question that we include in there as well, was to ask, if the child has any has experienced any situations of exclusion, we should be aware about going to the camp, going into the programs, so to know, does this child have past negative experiences that we can work through first. So in the sense where if there is, then it might be pertinent for us to discuss with the parents, how we can work together to ensure that those situations don't happen? Again, we don't want space spaces that are intending to be spaces of inclusion, to become spaces that ultimately perpetuate ongoing trauma. In the same way, as I think I think something that's important to recognize, and is that we all have some level of internalized ableism. I know many disability advocates and activists who will openly recognize that they themselves carry internalized ableism. And so what we want to do is to ensure that we've done the work that we can in ourselves and that we support the other children in the group and doing that work as well to challenge that ableism that we're steeping in every day, without it always is having to be the disabled person who's forcing that space taking that space, especially when it's a child who we have invited to be here. And so that's that. And of course in there, we also say, Is your child that before question, Is your child aware of their disability? How did they discuss it? And they've even gone so far as to say if your child wants to talk about it to the group? Is that okay with people, because in a school context, for example, will diagnosis and if you go into that terminology, what's considered confidential medical history, and so the adults aren't allowed to share it. But of course, sometimes kids talk about it. And in my personal, you know, my own family experience, one of my kids in kindergarten, came home from school one day and decided it just wasn't fair that the other kids in his class didn't know as much about autism. As he was learning about neurotypical socialization. neurotypical is a word we can use to describe people who have brains that are closer to that magic, elusive definition of normal. So he had been learning social skills, which we understand our neurotypical socialization forms, he was learning that so that he could get along well in class, but he thought, hey, it's not fair that they're not learning about how I work, either. And he went in, and he brought a book, and he did a little presentation, while he read, you read the book with his teacher, and they, they talked about it, and talked about autism. And then the next year in his class, he wanted the class to have the same information, but he didn't feel that same level of safety, to do it, to be involved himself. At that point, he asked that another adults do that when he's not at school, because his level of trust with that group wasn't established yet. And so that's where I think, knowing how that person talks about it is important, and also giving everyone the space to decide they want to lead that conversation themselves or not. It's also really important, because at the end of the day, disabled children aren't coming to programs to teach about what disability is, they're coming just to be there. And they should be allowed to just be there as other children. And that's where that inclusion comes in. And recognizing that what a person needs to feel included, is completely different, and how freely they're able to have that conversation with you as that person who's there for them that adults in the room? Well, it depends on the level of trust, you're able to build between you. And I mean, building trust with children is something that we aim to do with all the children,
Petra 27:40
that should be it's own podcast. Hey.
Margaret 27:43
Exactly, exactly. But in those situations, it's about that that relationship rather than about the specific diagnosis or disability. And and one last thing I'll say on that is absolutely no. Parents often are the ones who have a wealth of resources. As a parent myself, I appreciate when someone says, Do you have any specific resources that you find helpful you'd like to share, but also to know, going in and doing your own learning is great. And when you do go do your own learning, pay attention to who you're reading, and always prioritize listening to disabled people themselves. Always, always, always always, because they have that lived experience, and particularly around autism, you know, there's a number of organizations that still are very, very present who are in a let's fix autism, let's make it go away. But it's just a natural part of a natural way of being. But I would say absolutely, and to be honest, at this point, like sometimes there's associations, there's also sometimes like social media, I guess, influencers or whatever, but that's often a place where this Affirmative, this, yes, I can be disabled, and amazing. It's happening there. And it's often young people who are leading it. So that's a really amazing space to watch.
Petra 29:03
So you've provided a lot of really concrete first steps that look really different than what I thought they were gonna look like and look different than what listeners out there thought that you would say, you know, a lot of it has to do with reframing our understanding and reflecting on like, how am I thinking about disability? Am I thinking about it? You know, in terms of this deficit model, it's a lot of working through our own sort of nervousness or discomfort, doing our own educating and I'll look for some some resources and maybe you can suggest some resources after share in the shownotes as they say, my my last question just for today, because I think this would be a great conversation to keep going with it. is how can we show, for example, on a website or even before parents and families get to the form filling out stage? How can we signal or show that we're open? If not experts at receiving all sorts of disabilities? Or people with disabilities, I should say, disabled people? How can we signal that we're open to learning or open to working with you will build us we want to build a safe and trusting relationship with you.
Margaret 30:35
Yeah, I think a great way is simply to, you know, even at the end of a program description, to say, like, we aim to make our program as inclusive as possible, if you would like to discuss your child support needs, before they arrive, please feel free to reach out just to use that language to say, like, Hey, we're open to talking about support needs. And of course, having images of all kinds of children helps that it is as if you place where, because so many disabilities are invisible, we don't want to be in a position of saying, of trying to create an image that doesn't necessarily reflect the reality. And we don't want children with disabilities to become tokens and how we promote our activities. But I think naming that, that it's possible to talk about this, and that you're open to it is a great, great first step. I know many places will specify exactly how they're going to interact with pronoun choice. You know, that's something that you can also do in terms of your I've had parent handbooks that that state, clearly we will respect the pronoun choice that your child has, and we will respect the support needs that your child shares with us. You know, these are these are small ways to make it clear that you're open to that conversation, should it feel pertinent. And another thing I do even with Nick, in my in my team meetings as well, to really help people feel that is to demystify access needs, and include them in that, hey, I'm Margaret, I could have done this, Hey, I'm Margaret. I use she her pronouns. I speak English and French. And I'm neurodivergent. And all those are other ways to normalize within your own practices and break down that discomfort, so that you can feel centered and present in the conversation. When someone does say yes, I want to talk about a support knee.
Petra 32:35
That's all so helpful. I can't wait to go back and listen to this and sort of write down these strategies that have emerged in this conversation. And we have to do this again, Margaret, I want to talk more about the shadow program that you put in place at the line in the mouse and I know that there's so much more helpful information in in that mind of your so we'll stop here for today and look forward to recording another podcast soon. Thank you.
33:08
Thank you so much Petra!