Priya Lalvani Master_withcap === Priya Lalvani: The irony of segregating children in order to allow them to belong is absurd, right? We're gonna remove the kid from their natural place of belonging because they don't belong. And so we're gonna segregate kids to help them find community. And never once was there a discussion about, well, well, how can we make those places, places of belonging? Your removing the child who doesn't belong instead of addressing why the space is rendered that way. Um, and what could be done to change that? That conversation was never had. Tim Villegas: Hello friends. Welcome to Think Inclusive. I am Tim Villegas, and that was our amazing guest this week, Dr. Priya Lalvani. She's a professor of disability studies at Montclair State University and coordinates their inclusive education graduate programs with a PhD in developmental psychology from CUNY and a Master's of Arts in Special Education from Columbia. Priya has spent 14 years working with young adults with disabilities in New York City. Her research shines a light on ableism and the segregation of students with disabilities in schools. She's published over 20 research articles and co-authored the book, undoing Ableism. We're thrilled to have you here, whether you're listening to or watching, think Inclusive. MCIE's podcast that brings you conversations with people doing the work of inclusion in the real world. In today's episode, Priya shares some powerful stories about how parents navigate the special education system and become fierce advocates for inclusive education. We'll also take a trip down memory lane exploring the history of parent advocacy in special education. Priya sheds light on the resistance parents face when pushing for inclusive education and the disparities based on a family's privilege. One of the most striking parts of our conversation is Priya's recent research on battle fatigue among parents. She explains the toll that constant advocacy takes and institutional ableism they encounter. But don't worry, we don't just admire the problem. Priya also offers practical solutions and policy recommendations to improve the system and to support inclusive education better. Now, before we get into my conversation with Priya. I wanted to tell you about our sponsor for this season. I-X-L. I-X-L is a fantastic all-in-one platform designed for K 12 education. It helps boost student achievement, empowers teachers, and tracks progress seamlessly. Imagine having a tool that simplifies what usually requires dozens of different resources. Well, that's IXL. As students practice, IXL adapts to their individual needs, ensuring they're both supported and challenged. Plus, each learner receives a personalized learning plan to effectively address any knowledge gaps. Interested in learning more, visit I xl.com/inclusive. That's ixl.com/inclusive. All right, after a short break, we'll jump into my conversation with Dr. Priya Lalvani, catch you on the other side. Dr. Priya Lalvani, welcome to the Think Inclusive Podcast. Priya Lalvani: Thank you. So excited to be here. Tim Villegas: Uh, Priya, I know you as a, as a researcher, um, and, and so I'd like to start there if that's okay. Um, from what I know about you, you've been conducting research for, uh, over a decade with parents of children with disabilities for two decades, for decades. Um, so you've been conducting your research with parents with, uh, of children with disabilities and their experiences with. Uh, IEPs. So I'd like to start there and talk to you about some of the things you found out about, like the experience that families have with navigating this kind of system. Is there a common theme or anything that, that jumps out? Priya Lalvani: Sure. Um, yeah, I'd love to talk about that. So, yeah, I have been conducting research starting from when I was a doctoral student, actually two decades ago. Um, and actually my beginnings were, um, my interest was not as much in the, um, the educational experiences. It's, this is where it's gotten to now, but I started with, uh, mothers of children with Down syndrome and their experience of the birth of their child, um, in the context of a medical discourse, a societal discourse that devalues their children. And I was interested in how these mothers, um, constructed there. Identities as mothers in the context of the, in the face of this barrage of negative, um, information. Mm-hmm. They were getting, so that, so those were my beginnings just to, to sort of give it a, a start. And then over the, that first decade, um, I got increasingly interested in parents and their educational experiences navigating the special ed system. As I started to speak to people, I realized that if we want to understand parents of children with disabilities, um, this is a big part. Their, their navigations of their children's education, uh, is a unique part of their parenting experience. And so I became very interested in that. Um, and so I've done a few studies with parents on that, and so you asked me, I. I will give you a very ge I'll start with the very general and then Sure, Tim Villegas: yeah, yeah, yeah. We Priya Lalvani: can talk about all the nuances and specifics, but one, really, one thing that hits you is that this is a group of parents who, who identify as advocates. And that became clear to me, um, very quickly in this game, um, that advocacy, um, on behalf of their children in, in order for their children to get specific services or certain kinds of resources, and most importantly, certain kinds of educational placements. Um, this is a group of parents that believe that their advocacy, um, is needed. It's not a choice that it will be required, um, and that you better get tough. Pretty quick. Hmm. So that was one overarching, um, this idea of parent as advocate, parent as educator. And, and I just wanna put that very quickly for our listeners, um, or viewers, what have you, um, in a historical context, because sometimes I do hear people say, or people or my students say to me, um, you know, so this, this whole parent as being really, really involved, this is like a new thing in our schools. And I just wanna say, I, I like to say no parent advocacy has a rich history. Um, in fact, in this, in in the world of Special ed, there is a historical context. It was in fact families of children with disabilities who worked alongside disabled activists in the fifties and sixties, um, who lobbied for their children with disabilities to have rights to an access to a public education at all. Prior to that, there, there wasn't. Right. Um, so I, I'd like to start any discussion about this group of families with that grounding in a historical context of who, who this group is and what is the, the history of their advocacy. So that actually led to the passing of some landmark legislation as we know. Um, those efforts led to the passing of public law 94-142, which is now we has gone through many iterations and now is IDEA. Um, so those were some hard won gains. But what's interesting in the research today is that it's been 50 years since that, but parents of children with disabilities continue to view themselves in exactly the same way. They continue to believe that without, their advocacy in the context of special education, their children are simply not, um, going to get the kinds of services or access to their rights. But when you look at parents of, uh, parents who are seeking inclusive education, particularly as a subset of that group, the story is, is different also. Um, this is a group that, that reports across a number of studies, certainly including mine, um, but not exclusive to mine, that this is a group that experiences a great deal of institutional resistance. Um, they, they talk about how their efforts to get inclusive services or placements for their children are blocked or denied. Um, and when you look at this group disaggregating by, um. By ethnicity, by socioeconomic status, right? The story looks even more different. There is a disproportionate placement of students of color in segregated classrooms. And so the experiences of those families also, when you talk to them, look very different. And also when you disaggregate by disability type parents who have kids with certain disability labels or classifications, and those are, um, among those are, I should say, um, intellectual disability, multiple disabilities, autism or, and or, uh, non-verbal, non-speaking students, children, um, and any child or student who needs extensive levels of support in schools. That is a group of students who find themselves disproportionately placed in self-contained or segregated placement. And the experience of those parents to answer your question and whole story ending there, um, is a very unique one is, is very, very interesting. So I've come that done the broad and, and come to this narrow group that I'm very interested in families of children with, um, extensive support needs, um, or, or certain disabilities that are associated with high level supports and their experiences of navigating inclusive education particularly. And, and I'll say one more thing if you are asking me what is a common theme? Mm-hmm. Um, inclusive education as parent driven almost 50 years. After the passing of laws that explicitly outlines a preference for students with disabilities to be learning alongside their non-disabled peers. That is codified in our federal law. 50 years after that, or almost 50 years after that, pretty much all, if not most of the literature on this shows us that inclusive education continues to be parent driven. Tim Villegas: Hmm. So we have a law that if it wasn't for parents, we wouldn't have. Right. Right. Um, and in that law, the, the assumption or the spirit of IDEA is for inclusive education. Um. Yet 50 years, nearly 50 years since the passage of that law. It, it seems, or there's certainly, certainly a argument, argument to be made that, uh, the biggest advocates for inclusive education are not educators, but parents. Priya Lalvani: I, I think it's fair to say that, um, I should just, uh, correct one thing, Tim. I, I, I would be remiss to say, I wouldn't say that the, the, that we have the laws because of the efforts of parents alone, parents did not act alone. They worked alongside disabled activists. Um, so I, I sh I think that should be honored. Absolutely. Tim Villegas: Yeah. Yeah, yeah. Um, Priya Lalvani: but yes, that, that is, yes, exactly. Yeah. Tim Villegas: Yeah. Priya Lalvani: And that's why, and that is what's interesting about this. Tim Villegas: That is interesting. Um. So, um, while you were, while you were talking, I, I was thinking about if you, if you take, uh, imagine, imagine, you know, parent like the, the, a subset of parents, right? You have, you have a group of parents, um, who have children with disabilities and, and so a, a smaller subset of that group are parents of children with extensive support needs, right? And then a, even a smaller subset of that, you have parents with extensive support needs who are advocating for inclusive education. Because when you take the whole group of parents, not everyone is as focused or as passionate. Um, even though the law. Even though the law assumes that a learner should be included in, in, you know, general education mm-hmm. Further their in, um mm-hmm. That, that's, it's an assumption that is made. And, um, even though that is, that happens, not everyone is as focused or passionate about advocating for inclusive practices. So given that that's the case, I wonder I'm, uh, it's really not a question. It's more of a, it's more of a comment. Priya Lalvani: Yeah. Um, so, and I, I encountered this, this idea a lot. Um, you know, you're saying inclusive education, this and that, but you know, a lot of parents. Before their kids to be in self-contained classrooms. Mm-hmm. Yeah. I, I get that. I, I know dozens of parents, um, who, who have made that decision. I, I think it should be made clear it's not the parents, or rather, how can I say this? I understand why parents make difficult choices that they make, right. But we have to ask ourselves, in what context was that choice made? First of all, choice should be in, in quotation marks. Sure. Because it's, it's, it's put out there as a choice that some parents make, but a choice is only a choice when it's an informed choice, first of all. So I like to ask if, and I do, and I do in my work. It turns out half the parents that I've spoken to, I've just made up that number. But a great number of parents of this subgroup, particularly when they have children with intellectual disabilities or autism or and such, are not fully informed that the kinds of things that they desire for their children can actually be made available in general education classrooms. Yeah. So of course they would make the choices they make if a they, they don't know. And why would a parent know we, we don't have our children and go to a special ed, you know, class to learn these things. Right? Uh, so a parent is not, it's, it's is not obliged to know these things. An educator is obliged to know these things and to educate the parent about what is available, um, what is mandated by law. And so for and, and what are the research benefits of inclusive education? Tim Villegas: Right. Well, that's a, that's a great point. That is a great point. And I don't think, you know, uh, being a former, um, special educator and it have been in, I don't know how many IEP meetings, um, research about inclusive education, uh, rarely it's the top. It gets brought up rarely unless it is by the parent. And the parent is like, well, the research says, you know, that outcomes are better. Um, you know, more instructional minutes is better. And you have all these, all, all, all of these facts that are, are set at a meeting and, uh, typically that is met with, um. Well, you know, thank you for that information. Priya Lalvani: Bingo. Bingo. Understand Tim? Yes. Um, I, I have been to dozens, if not hundreds of IEP meetings. Um, I should also say to folks who are listening to me right now that I'm also a parent of, uh, a young woman now, a young lady of 22, but went through the system. She has Down syndrome, um, and, uh, was in general education classrooms since the day she was two and a half. So of course I've, I've been on the other side of that IEP table as a parent, but I've also been on the other side of that IEP table as a parent support for dozens, if not over a hundred. Mm-hmm. Other families and have interviewed God knows how many families. And you're right, uh, not rarely Tim, but never once has an educator ever corrected a parent and said. Now, let me tell you actually why inclusive education would actually be a better choice for your child. Um, but, but going back to your issue of parents choosing, right? So it's, it's not even just that Tim, that, that a parent, first of all is, is making a choice based not on maybe all the information we have about what, what is, what inclusive education even is. But the second that, there's three things. The second thing is that parent might say, well, we tried it. I really wanted it. We, you, you've probably heard this sentiment a hundred times. We really tried it, but it didn't work. And I want out and I get it. I sympathize. I'm a mom. Right? I get it. Tim Villegas: Yeah. Priya Lalvani: But, but, but is it that inclusive education didn't work? Or is it that inclusive education was never really tried, you know, putting a kid in a, in a gen ed room and saying that you tried inclusive ed. But you didn't give them all the supports, all the access technologies, all the means to communicate, all the supports, to make friendships, all the content and the curriculum modified. If you didn't do all those things and you put them in there and then three months later you said, see, we tried it. And the child legitimately is saying, I, I'm having a terrible time here. Um, so that's reason number two. Yeah. And the third thing, and I'll talk about that a little bit more, Tim, because I'm hoping you'll ask me about my, my latest research, um, is, is that not only do parents not know about the benefits of inclusive education, but in fact they are explicitly informed by their child study teams that self-contained classrooms and environments are actually better. Yes, they are. So, so what parent in their right mind who doesn't know otherwise. I would not trust the information given by a trusted expert, supposedly expert in the field. Tim Villegas: Right? Yeah. Yeah. And, and you know, Priya, that was my experience as well as an educator, is being the expert and being on teams where the recommendation, you know, is a segregated placement and, and certain, you know, um, I don't know. I, uh, I don't know if this because you, your, you're research focused on families, so, um, I don't know if you had a chance to talk to educators and the reasons why they felt, or the perception that a segregated placement was better, but I. Uh, my impression is that when educators say this, that this idea, right, that it's in the best interest of the child for then to be in a disability specific program or a special education classroom where only students with disabilities are, are educated. Um, they really believe it. Like it's not, it, it's not that you have all of these educators who are trying, uh, to derail, um, a student's trajectory. Um, they really believe that it is better despite the evidence. Uh, but still they, they believe it. Is that, is that been your experience as well? Priya Lalvani: It, it's been a hundred percent. I mean, um. I, I am a researcher that works with families, but I think, um, it should also be noted that I'm a teacher educator. I spend all my days with, with teachers. I, um, I'm a professor of, of inclusive ed, and, um, I work with already in service teachers. So I have access, uh, a ready flow of access to teachers as part of my life. But I've also actually done, this was some years ago. Um, I have a piece out on teachers' perceptions of inclusive education. And, and to your question, I was indeed exactly interested in what you just were, were talking about. And I wanted to understand because, because I, I know and I know that the vast majority of teachers are, are well-meaning and, and great. I spend my days with them and these are genuinely. Terrific people. I have to say, you know, when I think about my students, I have nothing but like, I'm in awe of them. But when it comes down to these beliefs, so I wanted to understand, I did a study on that and I had a, a sample of general education and special ed teachers, and that is exactly what I found. Um, every last one of them said that they were all for inclusive education. That, so that's interesting. Wait a minute. Mm-hmm. So that's the start of the study. Like I'm all for, I docu and like did like a little analysis of the, the discourse is like all in onboard. A hundred percent All means all I'm in all kids. Okay. Okay. As, as the interviews unfold. Now, if I stopped there, and I'm a qualitative researcher, but if I was a quantitative researcher and I just had a survey and I just asked them that. The results of that study. And there are studies like that would say a hundred percent of teachers support inclusive education for all kids, which would've been fake data, as we like to say in the research world. That recent statistics show that 42% of all data is fake. Get it? Tim Villegas: Oh, no, I did not know that. No, that's, that's a joke. 42. Oh, Priya Lalvani: made that up, Tim. Get that. Tim Villegas: That's hilarious. Priya Lalvani: Right? Recent, recent, recent. 42% of all statistics are fake. So, so, so if I had stopped that study right there, it would have, the findings would legitimately have been a hundred percent of teachers in New Jersey that was, that were interviewed, believed. That inclusive education was for all kids. But I didn't stop there. I wanted to probe. And so I did. And I asked them, well, what about this? And what about that and what about this and what about that? And as I'm talking and as we are talking, it turns out, well, they didn't mean this kid. They didn't mean that kid. They certainly didn't mean kids with autism for sure. They didn't mean kids with Down syndrome, or they definitely didn't mean intellectual disability. Oh, by the way, they didn't mean any behavioral challenges. They also didn't mean non-speaking kids. You get the idea. Tim Villegas: Yeah, yeah. Priya Lalvani: So it took, and so yeah, genuinely, genuinely believed from the goodness, Tim Villegas: right, of what Priya Lalvani: we believe that for those kids, a self-contained classroom is of course. The most logical. So all means all except for those that are not in the all. Tim Villegas: Yeah. Oh, well. So, um, I, I do wanna get to your research, the battle fatigue research, but I think this is a really interesting, um, little, little rabbit hole we're going down because, um, because another thing I hear is that all means all, um, and for those kids, right? For the other kids, for the kids with autism, intellectual disability, that inclusion for them means a segregated placement. Mm-hmm. And I don't know if it's just, I mean, we're just kind of playing around with words, right? Um, uh, and, but I find that argument more and more that people are making that more and more. Mm-hmm. Like inclusion for everyone and inclusion for you means mm-hmm. A special segregated placement. Mm-hmm. And inclusion for you means a general education classroom and inclusion for you means so like Priya Lalvani: Yeah. Tim Villegas: The word inclu, it just doesn't mean anything anymore. Priya Lalvani: Exactly. Yeah. Now that's, that's a really interesting thing you pointed out, and I, I do see that, but I think you're right. If we are using the word in that way, then of course we believe in everyone being included. Yeah. And in fact, I, I'm thinking now as you mention it, I was in an IEP meeting like three months ago with a parent, and I did say that I, you've just reminded me of this. I said, but you said that, that she, her kid could get the inclusion. And they say, yes, we mean we go out in the community. We take them for walks, we take them to the parks, anything but letting them interact with the non-disabled kids at their own school. Like, we have to go to some other park in town instead of just letting them have recess, um, at the same time. Tim Villegas: Oh yeah. That's, that's wild. That is wild. Yes. Okay. Um, well, there's a lot, there's a lot to discuss and unpack about that. But I do wanna get to, uh, one of your, um, recent research articles, and it's called Battle Fatigue Parents in Institutionalized Ableism and The Fight for Inclusive Education. So, uh, can you talk about what led you to do this particular research? Um, and then, um, well, you talk about whatever you want, but I know that, you know, uh. In the article you talk about barriers, so, um, I'll, I'll just let you take it from here. Priya Lalvani: Okay. Thank you. Um, so yeah, so what led me to do the research briefly is all the things we've talked about. Um, I've been doing interviews with families for a long time, but as I said before, I became increasingly interested in a particular subset of families whereas before, and I've certainly done, um, research with, with the full breadth of all kinds of experiences, my interest and passion actually is families of children with disabilities. But, um, and I had done a, a, a similar sort of research about 10 years ago about IEP experiences, not with this small subset of families. And I, I found, uh, the things that I had talked about earlier where, where parents felt that without their advocacy. Their children would not be getting the services or the placements that they had wanted for their children and so forth. But I started to think in the last couple of years, you know, time, like a decade has gone by since I did that. Um, and you know, people say to me, yeah, well, you know, but things are changing and now we have this line. You know, now we have inclusive education everywhere. Um, and you know, things have changed in New Jersey. So I was interested, um, particularly because I reside in New Jersey and work in New Jersey and train New Jersey's teachers. Um, and I don't know if folks who are listening are familiar, but New Jersey ranks particularly poorly on its record, on least restrictive environment and inclusive education. In fact, I. I mean, as a nation, we're not doing that great. But New Jersey lags further behind, um, than the national average. In fact, uh, we rank number 50 out of 50 states. By the way. Uh, I'll, I'll give you a little handy statistic, which I like to keep in mind this before right here. Tim Villegas: Okay. Oh yeah. We love statistics. Yeah. You like especially is especially the fake ones. Priya Lalvani: Okay. Yeah, exactly. Well, from this one, this Tim Villegas: is not fake though. Priya Lalvani: Okay. But this one is from the you, the US Department of Education page. Um, and they, they yearly reports, but, um, so currently we have 66 ish percent of our students, um, in inclusive education, which is defined as 80% or more of their time in a general ed classroom. So the national is about 66% of K 12 students. Um, are being educated inclusively by that definition. Um, but in New Jersey it's only 45, so there's a big difference between the national, which is also not very good. If you ask me 63, Tim Villegas: it no, it's not, it's not right. Yeah. Mm-hmm. Um, you Priya Lalvani: guys are doing a little bit better. I just looked up Maryland right before we got on it. Um, Tim Villegas: I should know, I should know this. I, I feel like it's in the upper seventies, but Priya Lalvani: it's 70 right now. It's 70. Okay. Yeah. So lower seventies, so Wow. I'm jealous, but, okay. Because we are 45, but, okay. So, so your question about my research, so I was interested in Okay. Just how far have we come as a state. Um, I'm, I'm very invested in New Jersey and inclusive education, and so that led me to redo the whole research. Um, I, mm-hmm. I did it with my colleague, Dr. Eileen Osieja. And this time we, we zoned in on a particular group of parents and they were those who, who specifically sought inclusive or wanted inclusive education. So I wanted to remove without any judgment, but I wanted to remove parents who themselves had asked for self-contained placement. For whatever reason, I've already said I get it. Um, I wanted to see what happens if a parent is only asking for what is in fact that child's entitlement not for something that is not, they're not asking for a private school placement. They're not asking the district to do something other than what is federally required to do. That was interesting. Like if a parent simply says, this is what is the federal law, this is all I'm asking for, what happens to them? What is the story? Especially if their child has a class, is classified under intellectual disability, has a condition like down syndrome, or is autistic, or is nonverbal or has extensive support needs. So, so that, so those were the parents we recruited. Um, and so I'll just give you eight of the main findings if I may. Um, okay. So the first thing that comes sweepingly across, um, the, the, the study is that, I'd like to say every parent, if not every, then all but one. But I'm gonna say all parents in the study said that a general education environment was never a serious consideration for their child unless they brought it up. Okay, so let's just digest that in the context of a federal law that is already there, that explicitly states that a general education environment is in fact the first consideration and the where the discussion must begin. Right? And in fact says that a, a child should only be removed, and I paraphrase this from, directly from the law, that a student can only be removed from a quote unquote regular, um, classroom if education in that classroom cannot be achieved even with the use of supplementary aids and services. Tim Villegas: Mm-hmm. Priya Lalvani: But in, so that's why, so I'm juxtaposing this so that our listeners can understand this is what the law is saying. But here, every parent says, never in the beginning was it suggested for their child with extensive support needs. That a gen, and if it was mentioned, it was mentioned in the context of sort of a, a very generic general education classroom cannot be considered because mm-hmm. It is not appropriate for your child right now. Tim Villegas: Mm-hmm. Priya Lalvani: It's sort of a sweeping boom right there. Right. So their initial placements, the vast majority of the parents said, even coming in at preschool, you've got 3-year-old child who we've never tried, who's never set foot in a general education classroom with their peers. We're being told this child is going to start out in a self-contained classroom. So that was one extremely broad finding. Um, so then the par, many parents, if not most, said that they brought up at some point. Inclusive education themselves. Like they had to initiate the conversation. They had to say, well, I've heard about the, some of them didn't bring it up at first. They brought it up four years later. Each one had a different story. Right. Um, a great number of their children started out and had spent many years in self-contained classrooms. Parents had heard about it through the buzz. They went to a conference, they spoke to a friend, they learned about it, and they bring it up at an IEP meeting. Okay. Um, and to your earlier point, they're talking about, well, I've heard about this research and the benefits and so forth. Then the findings show that when they requested it, that's when the, the, the roadblock starts to hit. Um, and they are told it's great. It's, it's great that you've heard about this stuff, but, but it's not for your kid. And then so, and some parents left it at that. Mm-hmm. Some parents asked for, for a reasoning because they had learned that a reason was supposed to be documented on the IEP. They were, that, that's the really interesting part of this study. They were informed. Any number of things ranging from this, you've probably heard, um, the general education classroom is too loud, too vague, too overwhelming, too crowded, too noisy, too fast, too academic. It's just not gonna be a good idea. Tim Villegas: Yep. Priya Lalvani: Other parents were told, so there were different categories in the paper. I sort of outlined it much better than I, I might be doing right now, but I've sort of laid out the different categories of reasoning. Uh, another category was the child's characteristics. So it's either the characteristic of the general ed class, it's too loud, it's too noisy, it's too fast. I don't know why any kid goes there, quite frankly. Right? It sounds like an awful place. Um, nobody can learn there. Um, but, but the second category was the characteristic of the child. The child isn't ready because they don't speak, they don't write, they're not potty trained, or they're not academically, um, able to keep up with the curriculum. They are, they don't have certainly supposedly prerequisite skills. Their behaviors, their non-speaking, um, make it, make them not a candidate for the general education classroom. Um, and so there's this. Idea in IDEA, um, if that's not a sort of funny way to say it, um, that this idea of burden of proof and, and federal law makes it clear that burden of proof lies on a district to, to explain why a child is removed from a classroom. In other words, it is assumed that a child is with a, a child with a disability is in a general education classroom, the burden of proof, like in our legal system right, is upon, uh, the person making the case to remove the child. The burden of proof is never on anyone to make a case for why a child should be yet. The study shows that every of these parents said that at some point they were made to believe that they had to make a case. Some parents made recordings of their child at home. Some parents wrote. Elaborate narratives about what their child could do and why they thought other parents have researched the benefits of inclusive education. I'm like, what? What? Why are we expecting parents to be doing these things? Right? Um, and then, and the another thing that was really disturbing actually, was that some parents were told that their children will not make friends and will be teased or bullied or not fit in, in a general education class. This idea, you know, they're just not going to fit in there. But in a, but in this other class, it's small, it's loving. They're gonna feel like they belong, um, and they'll find community there. It's, you know, it's sort of, to me, a little bit morally problematic. Because I'm a mom and I can, and I'm a psychologist. Um, and I can see how that plays right into our deepest fears as mothers of children with disabilities. Do you know what, what hits at the core? The idea that my friend won't, my child, my child won't have friends, that my child will be teased or bullied and not belong. And that goes for, that goes right to the core of the issue of your earlier question as to why some parents felt, you know what? Well, then of course this space is much better. The irony of the people who were saying this, I mean, I don't know how this didn't hit anyone, but the irony of segregating children in order to allow them to belong is, is absurd, right? We're gonna remove the kid. From their natural place of belonging and we're gonna, because they don't belong. And so we're gonna segregate kids to help them find community. And, and never once was there a discussion about, well, well, how can we make those places, places of belonging? You're removing the child who doesn't belong, instead of addressing why the place, the space, why the space is, is rendered that way. Um, and what could be done to change that, that conversation was never had. And um, so you've heard of the steering practices of, I guess people talk about real estate steering practices. Um, I've coined this concept of the steering practices of special education. Um, because this, this thing comes up a lot, uh, not just in my research, but across the literature where parents are told, um, the benefits of self-contained classrooms and the general ed classroom is downplayed. So in this study, every single parent pretty much said that the bells and whistles of the self-contained classrooms were outlined to them in great detail. They were explicitly told here in this self-contained class, it's, it's this beautiful haven. There's only five kids, there's all these teachers. There's so much support. You can have an individualized education here for any child. You can have, um, materials that are correct for them. You can have a special education teacher. That classroom. Remember? Too loud, too fast paced, your, your kid's gonna get lost. So it's almost like self-contained classrooms were, were marketed and packaged. And I used those words because parents used, I, I do like a discourse analysis in my studies and I, I look at the words that come up and words like sold came up a lot. So they sold it to me and I bought it. This line came up. So what did I know? Um, they sold it to me. I was sold, I bought it. And that's why I use the language of packaging and marketing, um, of certain spaces as better than others. Um, so those are some of the key findings that came out. Um, I wanna make sure that listeners understand that parents. Um, are not a passive group because it sounds from everything I'm saying is that they were like barraged by this, this information and, um, but in fact the parents in my study pushed back, right? Uh, most of them, if not all at some point attempted to push back. Um, and but here is where it becomes problematic because pushing back requires a certain level of privilege. Yes. A certain, like who gets to push back, who, which parent? And then the discrepancies in, in, in family backgrounds, circumstance, um, language, uh, families of, you know, linguistically diverse families, um, those from lower socioeconomic backgrounds. Those who simply do not have the ability to take on an institutional system, right? So pushback becomes problematic, whereas many pushed back and some were successful, not all in, in getting their children out of a self-contained space and into an inclusive one. To my earlier point about inclusive education being parent driven, I mean some, the last I checked are still struggling and, and engaged in this so-called fight, um, to get their children included. I, Tim Villegas: uh, this is, uh, this is heartbreaking, honestly, um, uh, uh, because I, as you, as you were giving all those reasons, I. Specific instances came to mind of families when I was in the school system. And it, it just, like every single, every single example you gave, I thought of somebody. Mm-hmm. Um, and let's just, I, I just wanna bring up what, what you talked about, about having families, having a certain, a certain amount of privilege to be even able to fight. Right. Um, and I, and I'm specifically thinking about, uh, those families who speak in other language and other than English and how those steering practices, like, like you said, it's, it's just so, um, compelling. For a family who already is at, is at a disadvantage because information is going through an interpreter or maybe even not an interpreter at all. Maybe it's, or maybe it's a sibling that can speak both languages. Mm-hmm. Right. It's just so, it's, it's so deceptive. Um, absolutely. That the family will say, we'll just go along with it and be like, yeah. Yeah. And so if there's no one else saying anything, no educator no, nobody else giving another option to provide services or, you know, a placement. Um, then it's, you know, you could have a hundred IEPs like that and all of them would go to, to a segregated and self-contained environment. Priya Lalvani: Exactly. And, and, and for that reason, parent advocacy itself should be problematized. I invite parents to think about the ways in which our parent advocacy actually hurts the system a little bit because of one, what we just said. It's only certain parents who are even able to be at the table to advocate, right? Um, the parents in my study, the kinds of things Tim, that parents do is, is jaw dropping, right? These parents talked about, I mean, certainly they go to conferences, they join organizations, they go to workshops to learn how to, uh, they learn about special ed law. I had parents in my study. Um, I will tell you three of them. You know, joined nonprofit organizations and took leadership roles. One established a new nonprofit organization to educate others. Four parents in my study went back to grad school just to be able to be a better advocate. Um, 22 of them, 22 of them hired a special ed advocate. Nine of them hired an attorney, five of them relocated their family to a different district. So, okay, look at all these things that they're doing that requires some level of, again, the word is privileged to be able to do these things. Uh, you need a little bit of first, you need time, you need energy. It's exhausting, right? Um, and what else do I need? I need, I need a little bit of capital to do these things. Mm-hmm. So when, when the parents who are able to do these things, do them, and I don't fall to them for doing it. But it leaves the kids of those who cannot further marginalized. Okay. So we're actually feeding into the inequalities in a way. And, and the bigger issue is when we deal with the situation on a case by case level, we leave the system unchanged. We are just fishing kids out of the water one by one. Yes. Mm-hmm. And I implicate myself in, in the problem of advocacy because when we are sort of metaphorically fishing child out of the water one by one, we're not dealing with the person who's throwing them into the water, if you will, in the first place. Yeah. Yeah. Right? Tim Villegas: Yeah. Priya Lalvani: So, yeah, and, and I saw that over and over in my study. These parents were invested in trying to get access for their child. To an inclusive setting. Tim Villegas: Uh, Priya, you used the words battle and fight in relation to, uh, well, I mean, it's the title of your research, um, but as it relates to parents and inclusive education, um, and both, believe me, I've actually, I I remember, I'm gonna tell you this really quick story 'cause I think it, it matters. Like, I invited as an educator, I invited a parent and, um, and a student to come speak to, to educators at, at a particular school I was supporting. And this, uh, this learner, um, uh, was on the autism spectrum. And he told his story about being included and then also the parent. And in that talk they talked about fighting for inclusive education. And at the end, one of my special education supervisors. Came to me and said, that was great. We really enjoyed having this student talk about his experience. But did they really have to say fight? Did they, did they really ha It just, it sounds so combative and it just, it's sounds so, you know, that's not the message that we wanna send. So I'm just gonna, I'll ask you why use those words, uh, is there a reason for those particular words, uh, when, you know, in this discussion? Priya Lalvani: Yeah. Um, yeah, thanks Tim. I also do get asked that, um, several of my pieces have the word fight or battle in it. I just wanna say outright, it is not my word. As a researcher, I use, I try to, uh, bring the essence of my participants to the forefront and I, and not just my work. But if you do an analysis of words used in parent narratives as they are talking about their experiences with inclusive ed and or, or navigating special education. Um, and I'm not the only, and actually there's a researcher, I think, um, Miller did some actual analysis of just that. Um, but the, the battle related metaphors are extremely prolific in their stories across all narratives. You find words like, um, you know, so we brought out the guns. We had to put on our armor. We're getting ready for battle. Um, bring on the war page, bring on, I mean, and parents don't want it to be a fight. They experience it as battle fatigue. They are tired, they are exhausted, they've. They've had to take time off of work. I had parents in my study who've had to take time off work who've had to take leave in order to engage in this. They don't want to fight, but I would be remiss to not to put out there that this is how it is being experienced. Tim Villegas: Yeah. And it, it, it shouldn't be that way. Priya Lalvani: Absolutely not. Especially, especially since what they are battling for was already won in 1975, the battle was won. Tim Villegas: The battle was one Priya Lalvani: we need to send everyone home. Tim Villegas: Oh my goodness. Oh, okay. Okay. Uh, uh, this has been such a, a fascinating and, um, really enlightening discussion. I. I, I would like to know, I would like to turn to finding some solutions for our audience because I know, um, the people that listen to this podcast are passionately, uh, involved with advocating for inclusive education, whether they are educators, whether they are, uh, family members, uh, or both. So what, in your perspective, are some things that we can do, um, that are, you know, solution oriented towards, um, towards this discussion? Priya Lalvani: So, I mean, the biggest problem that I see, and I work with teachers and, and we have this discussion where the teachers I work with tell me, you know, like there is gatekeeping going on. Okay. At that, at that child study team level, at an IEP and as a, my teacher is telling me as a teacher, like there's that much I can do, but this, this term gatekeeper has come up a lot. So I think what we need, perhaps if you are an administrator listening or school professional, I think we need maybe, uh, a little more professional development for child study team because a lot of it is, I mean, look, I'm, I'm getting at it from the, from the teacher level. I'm a teacher educator. Um, I'm not sure how much professional development on inclusive education and particularly inclusive education as a civil right is, uh, is out there, is being provided to child study team folks. Um, I think that there needs to be more training about IDEA and its, and, and what its mandates are. Um, and. This whole idea of removal of a child only being considered when all of the supplementary aids and services have been considered and exhausted. Um, maybe some more training on that. Um, the addit, the other thing that I think folks need to understand, parents and educators alike, there is no readiness criteria for inclusive education. So if you're a parent who's listening, you need to know that you don't need to make a case. You, you, you don't have to demonstrate your child. Rather, I should rephrase that. Your child does not have to demonstrate readiness to be in his or her natural community of peers, right? So rather, again, we need more professional development for educators to understand that, um, that there, that there is no such thing and that assessments. Are conducted as part of the process. Right. But we also need to understand that assessments are only for the purpose of understanding the child and understanding how we can best support the child. Right? That's really what it is. Like when you think about it, what is the assessment for? It's to understand, gain an understanding of where this child is at, what's going on with this kid? How is this kid learning? What does this child, and based on the assessments, the discussion should be, so how can we support this child in a general education classroom? Yes. Instead, what's happening is that the assessments are being used mm-hmm. As a tool to see whether the child can be in an inclusive. Tim Villegas: Oh yeah. Or, or where, yeah. Or you know, which program, which program would be the most appropriate. Exactly. Let me give you an example. And, uh, I, I know, I know educators out there, um, that this, this will resonate. So I, I'm gonna be careful here 'cause I don't want, I'm, I'm really not trying to call out anybody. Um, but I know for, I know for sure that there are educators, um, in school systems who use rubrics, um, to help them. Maybe rubrics isn't a, isn't a good word. It's more of like a, um, a collection of assessments and data, uh, that are put together in a way so that the school team can say, okay, well based on their. Um, you know, uh, educational, uh, psychological evaluation, uh, based on their beha, you know, behavioral observation, uh, based on all of these different criteria, uh, that small group would be the most appropriate. And they have some sort of tool, a school team will use some sort of tool, um, to help. It's, it's supposed to be so that the team could help make a decision as opposed to, 'cause I, I remember the discussion, you know, in, in my previous roles was like, well, if we have a data tool that says that recommends this placement over another placement, then it's supposed to take the emotion out of the decision. I get the look on your face. Yeah. Uh, hopefully if you're watching on YouTube that you'll, you'll see, you'll see it. But it's, uh. It's, it is, it's wild. It is, yeah. It's wild. Because like, um, school teams that are already have the, the steering practices, like you said, right, that are already, that already have autism programs, intellectual disability programs, behavior programs, um, it's, it's just, it's baked into the system. You have a meeting and you're like, okay, well where does this kid go? Yeah. And if the parents have the, um, have the knowledge, have the, um, have the, uh, capacity, um, uh, capital, right. If they have, if they bring along a lawyer, if they bring along an advocate and they are advocating for inclusive education, maybe they get it. Priya Lalvani: Yeah. Tim Villegas: But for everyone else. Okay. Autism program, behavior program. Exactly. ID program, here you go. This is what, this is where, this is your best, your child is best served in blah, blah, blah. Priya Lalvani: Yeah. And, and the, and you're right. And the, and it's framed as if it's some sort of scientific, um, sort of calculation. And, and that's not even more damaging, is that it's, it's presented as if it's some kind of science that your child who is non-speaking should be in a room with other non-speaking kids. I don't know who came up with that idea. I, yeah. Tim Villegas: I don't know. Right. I don't know. I mean, yeah. Priya Lalvani: And you're right. And then they're clustered by, um, by disability type. Yeah. But you know what else is baked into the system? Tim? I, because you used that phrase, um, ableism. I. Okay. It's absolutely, it's, it's not only baked into the system, it's baked into the law, actually. Um, and IDEA, as progressive as it was at the time, um, and I, I, I, I must acknowledge that the law had progressive intent, had great intent, and was a landmark law that gave students what access to education they didn't have before at all. However, many, um, disability rights folks have actually critiqued the law itself and pointed out that it was written in a way with the loopholes baked in, if you will. Tim Villegas: Mm-hmm. Mm-hmm. Priya Lalvani: AKA, the LRE stipulation. Tim Villegas: Yeah. Priya Lalvani: The LRE stipulation is in fact the legal loophole that legitimizes state sanctioned segregation. Of children with disabilities as no other group of children in our country has state sanctioned segregation anymore, though we know that children are still segregated by race and socioeconomic status. Informally. Right. But not, but it is not a sanctioned segregation. Tim Villegas: Yeah. Priya Lalvani: Does that make any sense? Only students, absolutely. With disabilities, only students with disabilities are the group remaining whose segregation is legitimized by federal law because LRE is basically a device that is not asking whether all kids, whether kids can be segregated. It's asking what level of segregation is appropriate for each child, and that is problematic. I. Absolutely. And there are places that have done away with that. Italy, for example, completely did away with any such thing and, and rehauled their laws, I think in the seventies and, and went for a fully inclusive system, uh, without any, any of this gradation in place. Italy currently has, I'm sorry, yeah, 98 to 99% fully inclusive system. Tim Villegas: Yeah. Yes. Um, I don't remember the guest. I'm gonna have to search, but we did talk about Italy. Italy system, um, sometime. I don't know exactly when. Um, but I wanted Oh, we're, I had a, I had a thought it was, oh, I know what it was. Um, so what I'm hearing you say is, you know, I, I've asked this question a number of times to different guests about, you know, what. What we need to do with the law. Like does the law actually need to be reformed? Um, is it just a matter of us actually holding, uh, states accountable to follow the law? So, um, what, in, in your view, uh, what should happen should, is it really that we need a, a, another reauthorization to and really focus in on this LRE concept? Priya Lalvani: Um, I mean, you're asking me and, and, and yes, my answer is yes, it is not just my answer, but there are a number of folks, uh, who are, who are working, you know, toward this and mm-hmm. In, in this area, um, of, of sort of a, a radical restructuring as Italy did, um, yeah. Of its law. And of course that is, you know, not. That is not an easy task. Um, no. Nor do I think that's gonna happen, you know, that easily or anytime soon. But the short answer is, yeah, we need a radical and it can be done. It has been done before. First it was radical to have the law, public law, right? 94-192. Of course, we can hope. But yeah, that does need to happen. We need to get rid of a, a deeply ableist stipulation of separate but equal baked into our law. And of course, that can happen as it has happened for other groups in our country. Tim Villegas: Yeah. Yeah. Priya Lalvani: And, and I, yeah, Tim Villegas: go ahead. Priya Lalvani: You were asking about solutions and I, I, yeah. Wanna also make sure that I touch on some more, uh, practical things, not these mm-hmm. Not just these bigger. Right. Um, I think that a simple thing like, uh, policy change or policy directives at the, at the district level, so where. Let's say I'm sort of envisioning what if at IEP meetings, um, there was a directive where a parent were made aware of what supplementary aids and services are. First of all, what is the exhaustive list of all things that can be considered in a general ed classroom? And, and, and that would have to be a discussion at an IEP meeting and signed something as practical as that, something as practical as all parents being given information, clear information, not take, they get the booklet clear information about inclusive education, its benefits for all kids, the research including for children with extensive support needs, um, intellectual disabilities and so forth. Um, and they understood that that was indeed a available. As the vast majority of that group of parents that I've spoken to have said they did not know in the beginning that it was even a consideration for their child. So those kinds of policy directives could actually make a difference. Tim Villegas: I, yeah. Um, well, Priya, this has been, um, just an amazing conversation. Thank you so much for your time. Can I have you for just a couple more minutes so we can wrap up with the mystery question, because I feel like we need something light. Priya Lalvani: Okay. Yeah, yeah. I'm intrigued. Tim Villegas: Okay. And then, uh, as I'm picking out the card, um, we're going to make sure to put all of the, you know, the, uh, the research article, links to the research and links to whatever you'd like for. Um, our listeners to engage with, uh, your, your, um, your other writings. I know you have a book, um, but we'll just put everything in the show notes and then you can just let me know what what you want, but, um, uh, for us to list. Okay. Okay. Does that sound good? Okay. Okay. Here we go. You're Priya Lalvani: going to pick a question. Oh my God, I'm Tim Villegas: Okay. So the, yeah, these are all, I do not know the question. They've all been pre-screened, uh, to, to be, you know, um, I picked all the good ones out. So the, these all should be good, but we can always veto any question if, if it is no good. Okay. Okay, here we go. This is, this is an easy one. May maybe, uh, so this says, do you have a favorite thing you do for a girls slash guys night out? So basically, what do you do for fun? Um, okay. I, you know what, it sounds like, it sounds like you need a girl night out. Priya Lalvani: I do need a girl night out, and I do sometimes have girls night out. I mean, I, I don't do a lot of fancy things. Um, I just like hanging out with my friends and, and just hanging out and, and yeah, chatting and talking and, and I mean, the things that I like to do, I mean, I'm gonna sound like a bit of a nerd, but I, I like to read, um, in fact my, we like to joke that my husband's pickup line was, um, do you read so like far the most, uh, like sexy thing that anyone could have said Tim Villegas: to me, Hey, it's all good, all good. But, um, Priya Lalvani: like I, I just love being with my friends and like a fun thing that we would do is just get together and I. Have a glass of, I guess, bottle of wine and, and talk. Tim Villegas: Yeah. Priya Lalvani: Yeah. It's not that exciting. But, uh, Tim Villegas: yeah. Yeah. Um, so I, I recently, uh, I love that. And, uh, I, I recently had some friends over to watch a football game. I mean, I, I like, you know, I like sports. Um, I like to watch it. I typically watch it by myself. But, um, a couple weeks ago there was a Thursday night football game, um, and it was the Atlanta Falcon. I live in the Atlanta area. It was the Atlanta Falcons was on, um, a Thursday night. And I asked my wife, I'm like, Hey, do you mind if I have, you know, some friends over to watch the game? And she said, yeah, that's, that's fine. You know, and so I, I texted all of my, like, I'm like, who would wanna come? It's a Thursday night. Like, I'm not gonna get anyone to be able to come over. Um, I texted like 10 people, right? Figuring like, only one or two would say yes. All of them said yes, all of them. And so, and so, I'm like, I'm so sorry honey, but I have like 10 people coming over Thursday night to watch this football game. And she's like, are, are you kidding? Like, do we have enough food? Just order a pizza. So, uh, yeah. So I had, I had a bunch of guys over on Thursday night, um, uh, and we, it was a great game. The, the Falcons won. It was like at, at the very end. And uh, like we are all celebrating and my wife is like in, in the hallway, like videotaping us, like rejoicing. And uh, I just. I mean, not all the time, but I do enjoy getting together. It's just fun getting together with other people, you know? Priya Lalvani: That's it. That's, it's the thing I'm with. The thing I, I agree. Without the sports, I don't do, but to me, just be my, you know, girlfriends rule, my girlfriends rule, shout out to them. But to me, just spending an evening, you know, huddled with them and a bottle of wine, um, on the porch is like literally the best thing I can think of. Tim Villegas: That's, that's great. Um, well, I hope everyone who's listening is able to find some time with friends and enjoy each other's company. And, um, thanks to, uh, Dr. Priya Lalvani for, um, spending some time with us on the Think Inclusive Podcast. Thank you so much. Priya Lalvani: Thank you so much. It was actually super fun talking to you. I was a little anxious at first, but I, this was great. Thank you. Tim Villegas: That's a wrap for this episode of Think Inclusive. Now let's roll the credits. Think Inclusive is brought to you by the Maryland Coalition for Inclusive Education. I'm Tim Villegas, and I handle the writing, editing, design, mixing, and mastering. Our original music is by Miles Kredich, and we have additional tunes by Melod.ie. A big shout out to a sponsor IXL. Check them out at ixl.com/inclusive. We truly appreciate each and every one of you who tunes in. We'd love to hear how you're using these episodes. Are they part of your teaching toolkit? Are you sharing them with a school administrator? Drop me a line at tvillegas@mcie.org and let me know. That's T-V-I-L-L-E-G-A-S at M-C-I-E dot O-R-G. And hey, if you are still with us this far into the episode, it probably means that you love, think inclusive and the work that MCIE is doing. So can I ask a small favor? Help us keep the momentum going by donating at our website mcie.org. Just click the button at the top of the site and chip in $5, $10, $20. It would mean the world to us and the children in the schools and districts we partner with. Thanks for your time and attention. And remember, inclusion always works from MCIE.