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The inclusive Education Series: On parental perspectives Dr. Lydia Ocasio-Stoutenburg · DiveIn: Diving into Special Education's Most Complex and Pressing Debates

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From the Division of Research of the Council for Exceptional Children.
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This is Dive in, the podcast where we ask difficult
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questions about the education of students with disabilities and occasionally we
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pretend we have the answers. I'm your host, Federico Vitolo,
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professor at the University of Filano, Chicago. So are you ready?
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Let's dive in. Welcome,
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welcome, welcome, welcome, welcome. Welcome to another episode of Dive In.
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We're continuing our inclusive education series.
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At this point we have covered quite a bit of a crowd. We started with
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David Connor helping us to think about inclusion through disability studies
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and disability rights. Then Doug Fuchs challenged some of the arguments
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for full inclusion and pushed us to think about evidence intensive instruction and where students
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should learn. Mel Ainsco took us around the wall and remind us that
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inclusion is an ongoing process of identifying and moving barriers.
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Valentina Miglarini brought race, immigration, disability and intersectionality into the
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conversation. And most recently Jamie Bashan helped us to move from
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concept to practice and consider how universal design for learning can help us to move
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to design inclusive classrooms. So we have here from
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researchers, we have here theories, evidence, instructional design.
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Today we're going to try something different. We gonna listen
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from parents. And there is something interesting about parenting
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more generally. The moment you become a parent, apparently everyone else become an
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expert on how to raise your children. Your relatives, your brother in law,
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your neighbor, your person behind the supermarket cashier,
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someone on Instagram who has known about your child for apparently 40
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seconds. Everybody is an expert except
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apparently the parent. Now in particular, in my case,
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that may be right. That may be the case in point. I'm currently recording a
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podcast instead of parenting. As I speak, my children are being watched by a babysitter
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I found online whose profile simply pray with children. No references,
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cash only. Is it okay if I smoke in your house? And I thought,
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good enough. I need to make this podcast. Parenting is about trust,
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so let's go for it. But for parents of students with disabilities,
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this question of who gets to be considered the expert
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becomes much more consequential. Because now the
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people giving advice are not only your relatives or random strangers.
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They may be teachers, psychologists, administrators, doctors,
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therapists, people with various degrees, peoples with acronyms after
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their names and we don't know even what they mean. People who may have enormous
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influence over what happened to your child. And that raises
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one central question in this whose knowledge counts?
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My guest today is Dr. Lydia Ocasio Stoutenberg,
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associate professor at Penn State. Lydia brings
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a particular interest perspective because she's just not a scholar or researcher.
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She's also an advocate and A mother of students with a disability,
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her work focuses on families, advocacy, inclusion, and experiences
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of parents navigating special education systems, especially those
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families who may not always be centered in the conversation and what is best for
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their children. Our conversation complicates some of the ways we talk
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about parents in debates over inclusive education. Because academics,
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including myself, can sometimes discuss inclusion as
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a philosophical question. Should students be included?
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Is segregator ever justified? What does authentic inclusion mean?
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But parents do not necessarily wake up in the morning thinking, what is
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my theoretical position regarding the continuum of placement?
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They may be thinking, is my child safe? Is my
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child learning? Does my child have friends? Does the teacher understand
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my child? Is my child happy going to school? And perhaps
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the most ambitious question of all, will somebody answer
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my email? That means parents can believe deeply in inclusion while also making
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very pragmatic decisions. A parent may
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want an inclusive environment, but what happens when the inclusive school does not provide the
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support the child needs? What happens when their child is being bullied?
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What happens when another setting appears to offer better service,
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greater safety, stronger relationships, or simply a place
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where the child seems happier? If that parent chooses the
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separate setting, that does mean they have rejected inclusion,
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or are they making the best possible decision within the options the
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system has actually given to them?
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Lydia and I wrestling with these tensions. We also
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talk about who gets here when parents advocate, because not
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every family enters the IEP meeting with the same resources. Some parents
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know the language of special education. Some have flexible jobs,
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some know exactly what questions to ask, and some can hire advocates,
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attorneys. Others may be working multiple jobs,
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navigating childcare and transportation, communicating a language other than English,
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or simply trying to understand a system that sometimes appeared to
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have been designed by somebody who really, really, really, really liked paperwork and
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acronyms. And yet we often interpret
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those differences as differences in how much parents care.
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So Lydia pushes back to think more carefully about genuine collaborations with
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family. And because Lydia brings both scholarships and
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her own experience as a mother, we also discuss what happens
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when the researcher starting these systems becomes the parent who has to navigate
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them. So today we're not going to be asking, what should inclusion
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education look like? We're asking, what does inclusive education look
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like from the other side of the IEP table. And maybe, just maybe,
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we will make it through the entire episode without my babysitter not burning
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my apartment with cigarettes. Are you ready?
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Let's dive in to my conversation with Lydia Oscasio Stangenberg.
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Hi, Lydia. Thank you so much for being with us in
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the show. Thank you for having me yeah, this is great.
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It's great. I'm excited to have you here. You know, one of the reasons that
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I invite you over is because we're talking
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about inclusive education. And you have such an advantage point
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because you do work with parents of students with disabilities,
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but you're also a parent, so you have that double vantage point
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that I think it will give us maybe different insights from those that
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we have had so far. So I thank you that. So I'm going to start
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with the same question that I started all the series
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on inclusive education. That is, what does inclusive education
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mean to you? I really appreciate you starting
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with this question because this is actually a question that I asked my pre service
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teachers at the beginning of our class, before we've
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had any engagement with materials, content, before I start lecturing,
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I start teaching, I just ask them what their thoughts are. And I
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think it's important to hear what people's perspectives are about it.
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And then I ask them at the end, like when all is said and done,
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and not only is this pedagogical for me, but it's
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also reflexive. Right. It allows me to continue to ask myself the question,
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what is inclusive education? As I continue to go on
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as a scholar and as a mother. And I would say my first response is
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that it isn't a setting, although it could be. It could be a
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place or a placement. But I think beyond the place and placement is
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to think about the attitudes, beliefs,
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behaviors that are inclusive. Right. Any place could be inclusive.
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Or even as we narrowly define inclusive spaces,
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those can also be exclusive to some students. So I think
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just breaking down our expectations in our rehearsed
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logics around what inclusivity is, I think it's
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important to keep thinking about that as you see and witness the
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world as you go into classrooms is how can
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an exclusive, how can an inclusive place be
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exclusive for another student? Or how could we redesign places
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to be more inclusive in the way that we're talking about it?
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And I think fundamentally is giving students the best opportunities,
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no matter their needs for support, no matter their racialized
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identity, no matter their socioeconomic experiences,
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no matter their presentations, is to be able to give our very best.
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And if we can, then we'll find ways to do that. So I think it
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invites us to keep pushing back and know that it's not
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an arrival point, but it's something we need to be progressing towards.
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Yeah, that has been definitely a theme through the series.
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The idea that you don't achieve inclusive education,
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you don't arrive, but it's actually interactive processes of always
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looking at the margins, always looking about who is being included or excluded,
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even with our best intentions and effort to include
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a student. And I wonder, I mean, how these ideas of
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inclusive education that you have been shaped also as you
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being a mother, right. And engaging with schools and dealing with schools
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and your own desires for your child. Was that different
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when you started with being
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a mother and fighting for those services in schools?
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Well, I think I'm glad you asked this question, because we're still in special education
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in a field that still, in 2026,
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really devalues lived experience and stories and real and
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sees these things as anecdotal or unimportant.
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But for me, it is really knowledge creation.
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And I will not undermine knowledge that is
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intuitive, that has been shaped by me navigating bureaucratic
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systems, that has been shaped by just knowledge of my child
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and what he has taught me. And I think those are important because
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stories like this get at the underpinnings, the things that are
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uncomfortable for people to look at. You know, what stories
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don't people want to share? You know, we're really good at talking
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about did the intervention work or not? But we're not really good at talking about
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how or who didn't work for and why,
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who wasn't included, who wasn't eligible to be in a particular
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study. But I'll say, just being
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on all sides of the proverbial table,
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it has also, no matter what, it has still been emotionally
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evocative. Whether I'm supporting a family as an advocate,
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it hurts me, right? It hurts me. I go home and I'm like,
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oh, we didn't win, you know, And I. And I take it personally because
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I think about my own child in that particular experience. And it's painful
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when you still have people who are stuck and
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not imagining a different opportunity or
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not really thinking like, you know, my hands are tied. I can't do anything
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else. But. But really not thinking, what else could we do beyond what
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we have in front of us? How could we reimagine the iep? Who else
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can we bring in as a key expert?
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But I will say, even as a mother, it's challenged my beliefs. It's challenged
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my belief system really coming in. And again, speaking about cultural norms,
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I was also raised that the person who
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has the most authority in the room is the person with the power. You need
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to listen to them. They know the best decision to
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make in this particular situation. And I was taught to defer
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to the person with power. I wasn't socialized to push
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back or to ask questions, or I just accepted and
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I can think about in my own experience, that has held me back from a
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lot of opportunities. So, for example, with my son,
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I was noticing some things about him. Yes, he was. He had
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this down syndrome label, of course, and that has a genetic etiology,
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right? That's clear. But when I noticed sometimes, you know, he was stimming
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or looking at ceiling fans or that his, his language, his expressive language had
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disappeared, I mention it to a developmental pediatrician and he
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says, well, Lydia, why do you want to add another label to him?
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Right? And I didn't want to add another label to
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him. I didn't. It's. That wasn't my goal, but my goal was,
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I guess intuitively I was thinking about how
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someone might misunderstand him down the road, right. Being a
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black child with down syndrome who isn't fitting into
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these narrow, prescribed norms about what down syndrome
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is, could he be misunderstood? And could that potentially
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put him in danger? And so those are the questions that I have about.
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I guess some theorists might say, well, is that very inclusive of
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you to be thinking like that? Right. To be saying, am I still
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label seeking by asking those questions, but not understanding
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it does allow us to reimagine boundaries,
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right? Boundaries even within these 13 federal categories,
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that there's overlap, right? There's not just. It's just.
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It's this or it's that. But I think that's part of inclusive education,
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too. And so, so tell me a little
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bit more about. About that. You mentioned, I think, something, something very interesting that as
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having a child with down syndrome who also is black,
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you, you. He may be in you. You were afraid that his
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behaviors may have been read in ways that he may be in danger. Can,
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can you speak a little bit about that? I think there's always this.
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And really talked about the tenacity and entanglement
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between racism and ableism, right? How they work together,
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how they're inseparable. And so just
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as you have so many disability rights scholars who've said, you know, once you've met
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one person with autism, you met one person with autism. Well, yeah, but once you've
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also met a black child with autism, right. Then the behaviors
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are really flagged differently. Now you're perceived not just as, oh, yeah, well,
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that's a behavior that's consistent with autism, but now it's like, oh,
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that's dangerous now because of the endurance of anti blackness.
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Right. And so we're seeing that play out in so Many different stories.
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We're seeing that in over discipline. We're seeing that in so
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many opportunities that our students are not being offered as compared
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with their peers who are, who are not black or who are non disabled.
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And it's clear that there is some concern
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that a parent might have there if that is not well
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understood. And that's not saying that the system is also perfect in responding
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to that. But I think we would be remiss if we don't acknowledge
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where it sometimes places us if we don't have that
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level of understanding of an intersectional understanding. We need to
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understand how intersectionality is operationalized even
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with, in our schools, with teachers with best
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intentions, with school leaders, with personnel,
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even families with best intentions. You know, it's still a reality.
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Yeah. And can you take us that
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thinking, can you help us to bridge that to education and the experiences
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you have with your child, particularly when you were fighting for services, were you
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looking for certain services maybe that the school was not providing that may have
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helped with that situation? I think I
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can talk about coming into my doctoral program, starting my,
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starting my doctoral program. I at the same time received
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my son's IQ scores. And I talked about,
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you know, leaving class, but also sitting in the parking lot with
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this document and reading where they had assessed his IQ scores and just
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crying. Right. And so my husband didn't understand.
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He's like, it's just a number. I don't understand why he's so upset.
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And I said I was trying to explain to him, like,
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this is almost like a sentence, like you're almost saying
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that from here on, I'm going to decide where this child belongs.
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Right? And so we did the things that
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we said were prescribed, like went to a better school district. Right.
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And so. But I could see how he
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experienced segregation even within so called
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inclusive environments. So everyone else is having reading time
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and circle time, and my son is in the back on a water table.
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Right. That's why isn't he entitled to early
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literacy experiences that can enhance his learning and reading? Why is
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he now all of a sudden not positioned as a learner?
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And I think about those experiences. I remember going to the principal and asking,
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you know, this is what's happening? And she
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cried, and she cried for 45 minutes.
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And she said, I'm so sorry, I can't
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offer you anything beyond that at this school. And I said, this is supposed
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to be a top school. This is where early intervention recommended we
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go, what do you want me to do right now?
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What should I do? And I Didn't know what to do with her tears either
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because I wasn't crying, but I was hurt and angry,
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but I just didn't know what to do with her response.
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And it didn't help me. It wasn't actionable, it wasn't here's
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what you need to do next. It wasn't empowering, it wasn't uplifting,
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it wasn't materializing in anything that I could use. So I
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say that to say, like even people with really good intentions
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I think have failed me at
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giving my child the supports he could use to
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achieve or opportunities or you
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know, high leverage practice, like all that stuff he was never
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given. And I take that with me. Right. I take that with
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me into my work and I understand how now to
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speak to my pre service teachers and to prepare them for these things.
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Yeah, I mean those experiences that parents have, sometimes they put them,
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and I've been saying this in the series, they put
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them in very almost impossible situations. Meaning you get
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to choose all the choices in front of you are none of the choices that
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you want to choose. Yeah, but you have to choose one. Right?
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And so I'm thinking, I mean, you've been working with Beth, Harry, you work
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with Harry, which is, you know, we can name it like the empress, the queen
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of, you know, multicultural special ed. I mean she's been one of the first
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big names on the field in that environment on that area.
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We also had on the show on the first season. So for our
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audience to check that podcast at that episode.
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But one of the things you say it's with Beth is
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that you should meet families where they are. And I was thinking
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about just the story you tell me. But one
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of the things that I have encountered in my research and also
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have been discussing in this inclusive education series that
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parents may not simply want inclusion, sometimes may just
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want their child to be safe, to be happy,
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to learn to be with peers like themselves
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so they can develop meaningful relationships which may be
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going against for what we understand about inclusive education.
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Right. Because the parent may want a segregated
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environment because they wanted to hang out maybe at a high school level.
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And I have had this conversation with parents. They want to have them in
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a classroom with peers like them because they wanted to revolve relationships and deep
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friendships with people that like them. So how
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do we make sense sense of this? How, how do, how do overcome this idea
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that we want clits included but parents sometimes may want
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something different.
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First of all, I agree with you about Beth. She's. I call her the goat
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and she always have to explain to her what I mean, I told her she's
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the greatest of all time. I mean, in terms of what she's
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brought to the field and also in shaping qualitative
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research so methodologically as well, her set with her to
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understand the value of qualitative research and why we do
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stories with families. I mean, I really have learned so much just sitting
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next to her and speaking with parents alongside her and just
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watching the questions that she asks. But I think one of the things that our
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work has done is uplift some of those stories that you're talking
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about is how are we defining inclusive education
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and why a family might not want that for their child.
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And you know, in our, in our case study book, like we didn't know
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what we were going to get. We just let families, I mean, we had
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our interview protocol, but we just let families share with the family to share.
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But we had one particular mother who she
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identified, she self identified as a white Latina mother.
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She also said that she could navigate the school
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system. Like she knew this like the back of her hand. She worked in the
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healthcare field, so she knew all the things. So what was
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striking is that she had a son with autism and
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she showed up the iep, so she did all the things. But during the summertime,
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they decided to change her child's placement to an
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inclusive setting while she wasn't present. So they
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called a meeting while she was working. She couldn't be there. Her husband went and
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they just asked him to sign the document. I mean, he doesn't know what he's
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signing. He's just like, okay, you know, whatever you said, if you already have this
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meeting. But what happened was they deliberately went against her placement
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because they were arguing that, oh, look at this child's academic scores.
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We want him to stay in a gen ed kindergarten.
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She said, I don't want that because I want him to feel
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safe, I want him to feel loved, I want him to feel valued.
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I want him to be around other children who are receiving the same
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supports that he's receiving. I want teachers in Paris who
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understand his support needs. This is what I want. And there was a big contention
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like they were really could not wrap their mind
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around why she wanted that. I mean, just couldn't understand why
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would anyone want that. And it really is sending
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a message about how we frame special education. Right?
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Is that's the thing that people are trying to avoid and that inclusive,
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you know, general education spaces are up here. Right? That's what we always
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want. But not understanding that families have the autonomy to choose and
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why they might choose that I can even say for myself as
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a proponent of inclusive education, why I had to make the decision
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to pull my child out of public school. And I did. After feeling
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him segregated in all those so called inclusive spaces,
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that I can feel what was happening to him. And I made the decision to
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pull him out. And I'll tell you what, from those segregated
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environments, he had friends, he was included in
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plays and productions, he had a job to do,
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he had expectations. We pivoted over to
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zoom, they adapted. I mean it really was a
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place that felt like family. And I had never had that experience before in
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my life. And this was again a self contained school,
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mostly kids with down syndrome, mostly black and brown children.
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Someplace where people might say I'd never send my child. There was
24:28
ultimately the most wonderful place for him. So again
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I say it's not a location, but it's.
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It may be a location, but it may be a space where you feel
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children are valued, loved, feel made to feel worthy,
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protected, and that there are high expectations of him.
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Because there were very high expectations of him.
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Well, that makes me think why the other place doesn't have those qualities,
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right? Because if you are, if you are looking at this different place
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because you're earn, you're yearning for, you know, safety and
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love, I mean and sense of belonging and friendships and
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high standards learning, that means that the other
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place historically doesn't have offer you that right.
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We can go back in history and just look at how special
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education came about and how we had
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to fight for free and appropriate public education. I mean it
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came because that wasn't so that wasn't the model for public education.
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That wasn't the model for schooling. It wasn't
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as much as we can argue the 14th Amendment right. That wasn't
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the reality for so many families. And so their advocacy came
25:43
from being excluded. And sure, at the front of
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those advocacy stories for white and middle class families,
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but the cases are black and brown students.
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Those are the cases, Those are the cases that led to idea,
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right? Those are the cases that led to Brown vs Board of Education that are
26:05
really there. And so why don't we have what
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I'm thinking about, what we're theorizing about what exists in, in some
26:15
private schools, right? Why don't we have that in public schools
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that are supposed to offer that by law? And that's because we
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haven't changed the structure fundamentally, we haven't changed the culture of
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it. There's still Somehow the expectation
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that this is what we've outlined for you,
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if you don't like it, you need to take an adversarial
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stance. You need to follow due process. I mean there is no built
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in mechanism for relationship building and
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there is no built in relationship for could we negotiate and think
26:51
of something else. If you don't follow school based rubrics,
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if you don't follow what school personnel are dictated the
27:00
way that you should follow it. And I think that's the hidden
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rubrics of it, that's the part we don't talk about is
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what are the expectations of parents in these particular spaces
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and why don't we have it? And that's not to say that teachers don't have
27:16
good intentions. They're sometimes subjected
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to the same pressures. They're under systems too.
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There are lots of caring counter examples I can present.
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But we also know they are also part of the system too. So how do
27:33
we change not pointing at particular individuals or schools,
27:36
but how do we change this system?
27:39
Yeah. And teachers are also bounded
27:44
by their own expertise. And if we university programs or alternative
27:49
programs are not preparing them with the dispositions,
27:52
capacities, skills, attitudes to
27:56
include students with disabilities, they come totally
28:00
unprepared. And of course the response is going to be well,
28:04
this is what I do. And if you cannot fit within the parameters of
28:08
what I can do, you are better off finding
28:12
that somewhere else on the educational market, to put it some way. Absolutely.
28:17
Which you know,
28:20
take me to another question that what
28:25
counts as engaged parent and we were talking
28:29
about these parents. We were having this conversation about how
28:34
sometimes we don't listen to the stories of parents and the narrative that
28:38
come with them. So I
28:41
know you have done some work on parent
28:47
engagement advocacy.
28:50
How do you think schools think of and
28:56
define or expect a parent engagement?
29:00
I think that is part of the problem is that the expectations
29:04
of engagement are often based on non disabled
29:08
students or a certain type of disabled
29:13
student because we have to acknowledge disability hierarchy.
29:18
Right. We think of students that we people would love
29:22
to support and then say okay, I want to be a teacher of
29:26
these particular students, but I don't want to deal with those students.
29:29
Right, Those. That's too much. That's too much support.
29:33
I think those are included in what we think
29:37
about meaningful and I think that extends to parents.
29:41
There's been a lot of work on what we
29:45
think about associative stigma. And Irving Goffman talked about
29:49
the stigma from children extending to parents.
29:53
And so parents who are going to battle
29:57
for children are also stigmatized. And so there's a
30:01
lot of, like, I mean, old perceptions, like back to refrigerator
30:06
mothers and things like that, but also perceptions of black
30:09
and brown parents as they. They don't care. They're uninvolved. They're. They're not
30:14
invested because they're working and can't come
30:18
to your 2:30 meeting. Right. Because they have a job or
30:22
because they're not presenting in a way that you expect
30:26
them to. And there's so much surveillance, the way that they're dressing, the way that
30:30
they're speaking, or your school is not providing an interpreter.
30:34
So for multilingual families, you know the language,
30:38
which is already at about 11th grade, they're not even accessing
30:42
this. Right. And so those things are hidden behind that. But they.
30:46
But the families who have this intuitive knowledge,
30:49
I feel, are very devalued. And I can
30:53
think of, in my work, we have a protester, but her name is Althea.
30:56
And Althea, for me was hands down the most amazing
31:00
advocate. I mean, not that I'm ranking any of them, because I don't think we
31:04
need to do that. We don't need to rank families like, oh, you have this
31:08
and you don't have that. Because we often think of those,
31:12
like, powerhouse advocates as the ones who've paid
31:16
for training and who have knowledge of the law and who are on all these
31:20
organization boards. And sure, they. They get it done,
31:24
and they have a particular way of engaging and
31:28
they have a way of pushing back, but we often don't look at the
31:32
parents we don't expect. Now, Thea is a black woman,
31:35
head of household, raising her child and her daughter
31:39
and her granddaughter, doing the best she can for her son,
31:43
David. And she has been asking for David
31:47
to have some other means of supporting his speech.
31:52
She's been asking for that for the longest. She asked for speech
31:57
services to be beyond 30 minutes one time a week,
32:01
and to have some other support in place. Now,
32:04
okay, go back to the law. Ida says that
32:09
assistive technology should be considered, right. And so
32:12
the school team should provide whatever they could.
32:15
So in order to meet the compliance, the district
32:18
said, here, here you go. And they gave her a
32:23
communication board. Federico, when I say a communication board
32:27
was a piece of paper that somebody printed out, you know, somebody in the
32:31
office printed out. They put it in one of those clear envelopes.
32:35
The envelope was cracked, wasn't even laminated. Okay, you could. They could
32:39
have at least laminated it, but it was put in a clear folder, and they
32:43
said, here, here's a communication board and it had a grid, which was
32:47
mostly. I mean, it was just filled with. It was confusing.
32:51
They didn't reduce the field. He's supposed to use that. And they said,
32:55
here, check. We. We gave the at. We did,
32:59
you know, and I didn't know what Althea was going to do, but Althea
33:03
went to the district. She went to the district and she said,
33:06
I'm bypassing this school since none of you are responding to
33:10
me. And she went to the district and she said she was on the phone
33:14
on. Hold on, hold on, hold on. But to
33:18
me, yes, to me, that's advocacy.
33:23
Yeah. Like, you know what you need, you know what your child needs.
33:27
You know that this is wrong. She's not reading through pages and pages
33:31
of laws and regulations, procedural safeguards. She just knows that
33:36
is not acceptable. This piece of paper in
33:40
this piece of plastic that's cracked, unacceptable. And it's
33:45
a lack of value for that student and a family dedicated
33:49
enough time to provide the right tool. I mean, you may have a
33:53
low tech tool, but another thing is to present,
33:57
create a project very quickly
34:01
that symbols that you're just trying to check a box. Right. Trying to
34:05
comply. But that
34:09
story kind of. Oh, reminds me of, of the idea that
34:14
sometimes we complain that parents are not engaged, but if
34:18
they're too engaged, it's a little problematic. So. So schools,
34:22
I think, navigate this as a tension
34:26
or. Or dilemma by always wanting
34:30
parents to engage, but not so much. Not to the point
34:34
that they've been asking for so many things. We did. Did you have that experience?
34:37
I did. And you get perceived as the, you know,
34:41
that parent. You know, it's very coded language, but the problem parent.
34:45
Or so now in my IEP
34:50
meetings, the superintendent comes,
34:53
right? Because I'm faculty.
34:57
So now there's a different expectation. Right.
35:01
And you know, I asked the question, I was like, do you.
35:04
You come to all IEP meetings. She goes, sometimes, you know,
35:08
and it's not necessarily that she's being contentious
35:14
or not helpful at all, but I would imagine that
35:18
her presence there could be really intimidating to people. Right. Because it's
35:23
me by myself and there's all these district personnel. Right. And so.
35:26
And these are people who work for it who've never really
35:31
met your child and never interacted with them. And I understand how
35:36
power is being played. Like, let me leverage
35:41
the power here. By. And who am I? I'm just another
35:45
parent, right. But then I'm not. So it's,
35:49
you're asking for too much or you're Too descriptive on this
35:53
goals, and I'll send it right back. I'm like, let's fix this goal because let's
35:59
rewrite that to include other kinds of sensory support, things like that.
36:03
I mean, I'm not asking. I don't. Wouldn't consider myself being a pain,
36:07
but I would consider myself being knowledgeable. But I can see how that can
36:11
place parents in a very. In the position of being an adversary.
36:16
Right? Like you're, you're pushing back. We just want
36:20
you ultimately you're sending the message. You just want them to sign the document and
36:24
shut up and I never see you again until next year, next year and a
36:27
day after. And I think that message is being
36:31
sent to parents. I acknowledge my own affordances in that space.
36:35
But I know there are many families who don't have the ability to see what
36:39
is happening to them. And there's also the perception
36:43
of them shutting down sometimes and being silent in
36:47
those moments as they're disengaged. And I think sometimes they hold
36:52
silence to try and protect themselves or to
36:57
recompose themselves or to regulate themselves when they
37:01
may be screaming on the inside. You know, that's an interesting
37:05
point is how, how do professionals read parents?
37:09
Disengagement, right. And what is really behind the core tone of that
37:14
disengagement? It's like this. Read this engagement. Or it's like,
37:17
as you say, frustration,
37:20
disagreement,
37:24
the idea of like, damn, I have to fight again for all this.
37:27
Right. There is a moment also if you are in a constant fight
37:31
that you lose energy, you know, you lose steam. I mean,
37:34
how long can you sustain that across the years? Right.
37:38
Or resistance. It could be you're. Now you've
37:43
pushed me to the point where you get my resistance. So is this
37:47
ultimately this argument, right. Have we reached an
37:51
impasse? Right. And is this going to hurt my child?
37:55
And I think people don't realize there's again,
37:58
a way that people are socialized, is they think I'm entitled,
38:02
I can say whatever I want. And I expect us to still be in relationship
38:06
with each other. But a lot of our parents realize, like, if I
38:10
say something that's not, that's going to impact our relationship,
38:13
that could fall back on my child. Like, that could somehow be retaliation.
38:18
And I don't want that. And so sometimes you see families
38:22
hold back for that reason is because they know,
38:25
wow. I think that this is a battle. I'm going to have to pause
38:29
right here and we're going to have to redirect. We're going to have to re.
38:32
Strategize because this is, this is, we're not going to see beyond this.
38:37
And then, and then it's going to fall maybe in, in the,
38:40
in your child. Right? The, the consequences. Yes. I mean, it's such
38:44
a huge burden. Right. If we think about families who have just been a
38:48
parent, period. Right. It's just a lot of work.
38:52
You know, I love my children, but it's a lot of work.
38:56
It is, it is. And if you put on top
39:00
of that all the advocacy and
39:04
research and understanding of a new system. A new
39:08
system, meaning like all the policies and legislations
39:12
and rights, et cetera, and then the emotional burden
39:16
of how to do this over and over over again. It's, it's huge. I mean,
39:21
it's a huge backpack to carry through all,
39:24
you know, your years, high school or your schools.
39:28
I mean, there's a lot of interesting work lately on parents burden
39:33
and the emotional toll that
39:37
that takes on parents as they fight to get their
39:41
kids included. Have you seen something in your own experience or on the
39:45
parents that you have worked with? One of the things I'm looking at is
39:49
making the connection between the school and clinical spaces
39:54
because sometimes our practitioners assume that they're
39:58
the first time that a family's had to encounter
40:02
tension or advocate. And mind
40:06
you, children are coming in, in kindergarten, but they may
40:10
have had a long history way before that in clinical spaces
40:14
with practitioners, with healthcare practitioners. Some of my
40:19
work centers on children with down syndrome. And I just look at children with down
40:22
syndrome, it's like from the beginning have had to fight for their child
40:27
to exist. Right. Because of deficit and ableist perspectives
40:31
about children with down syndrome. And the pressure,
40:34
pressure, pressure, pressure. I could see pressure to pressure to terminate
40:38
and just really antiquated
40:42
ideas and ideologies about what children's
40:46
potential would be and just putting that into parents heads. And so I
40:50
think I have a participant,
40:53
Althea, who I mentioned before. She quotes scripture and
40:57
she says, you know, my hands were trained for battle. And it's like,
41:01
yes, from the beginning your hands are trained this way. I mean, your arms are
41:04
trained for battle. And should you have to be, should you have to be trained
41:08
for battle? And when do you, when do you get to put your battle armor
41:13
down? Or do you ever. Is this a lifelong battle? And yet
41:17
is that something that you take on once you are
41:21
a parent to a child with a disability and
41:25
especially a black or brown child with a disability?
41:28
Or is this something that our systems are continuously imposing upon
41:32
us as they overlap? I think that is
41:36
a question that I don't think that people acknowledge
41:40
very well. Yeah, no, they're totally right because parents do
41:45
face the same challenges that they face in school. They face it in
41:48
all in other environments, too, as you say, it's like on the healthcare system,
41:55
in out of school activities, I imagine, too.
41:59
How do you find out of school activities what you do in the summer?
42:04
There are so many different environments where they keep facing this.
42:08
And sometimes I wonder, it's like that row keeps pulling
42:12
and pulling. When does the rope break? And what happens
42:16
if the road breaks? And where are
42:20
emotional consequences and health consequences
42:25
for parents? Because this also, I think, has an
42:28
impact on parents health,
42:32
not just mental health, but health in general.
42:36
Absolutely. There's lots of data that shows racial battle fatigue.
42:40
You know, the fact that it's shortening people's life, the fact that, you know,
42:44
it's driving up, you know, every time you're engaged in these kinds of things,
42:48
it drives up your fight, flight or freeze. Like you're.
42:52
You're driving up cortisol levels and you're, you know, activating your
42:56
sympathetic nervous system in a way that, you know, it's impacting
43:00
your body. So. Yes. Yeah.
43:04
It also makes me think, you know, how in our
43:08
field, people even like us, that's work with parents and try
43:12
to elevate those stories. How sometimes
43:15
the celebration, or I don't say
43:20
celebration, acknowledgement of that, parents tirelessly fight.
43:25
Persistence, active engagement.
43:30
We elevate it. Right? We. We kind of.
43:36
I don't say romanticize it, but we. We elevate it to a point of
43:40
something that needs to be done. And I wonder how much of that
43:45
runs the risk of normalizing the system that is
43:49
actually demanding that kind of very courageous
43:54
engagement with schools. Because we are elevating
43:57
the actions of these fathers as the thing to do,
44:00
but by doing that, we are
44:04
acknowledging that the system is so broken that that
44:08
needs to happen for them to have basic education for the children.
44:13
Absolutely. Annette, I love that you use the word
44:16
romanticizing, because we are. We are romanticizing it. We're looking
44:20
at that as if you follow this pattern,
44:25
you will be successful. This is the model for doing it. And look at
44:29
these parents who are doing it. Right. Right. And we see parents all the time
44:32
sharing posts on social media of things that they've done, sharing posts of their
44:38
children. Unfortunately, you see teachers sharing posts about difficult
44:43
conversations that they've had with parents. I mean, violating all kinds of privacy rights,
44:47
to be honest with you. But you see this all the time.
44:51
But what it does is it really reifies the thing. It really perpetuates
44:56
that this is the way it is. It doesn't push back on it at
45:00
all. It just says, you're lauded if you can do
45:04
this well, if you can do
45:08
lawyer speak, right. And if you can understand the legal jargon, if you can pay
45:13
the money to find an attorney, if you can find someone to come with you,
45:16
then you've done the thing well, done right. But it doesn't challenge
45:22
the system, that this is wrong to put families through this just
45:26
to get what their children need. And that's why we need
45:30
these counter stories. That's why we need the disruption of
45:35
the narrative. If families only understood the law,
45:38
if families only had somebody with them, if families only did
45:42
this, if families only came to the schools, well,
45:45
what if those assumptions are wrong? And I think
45:49
this is where we should encourage even us as researchers to revisit
45:53
our ethics. What are we saying? What do we want our research to do?
45:57
What do we want our research to extend? Do we want to
46:00
continue along the same story, the same deficit story of families?
46:04
Or do we want to tell a different story? And I think that's our opportunity
46:08
to do that. We can use those stories to challenge systems,
46:12
to challenge policies, and to challenge those structures.
46:16
Like it does not have to be. This is the way it is. These are
46:20
parents who are exemplars who have played it well.
46:23
What do parents do who are situated on the margins,
46:27
who are doing something else? And those are the stories don't
46:31
get elevated. Yeah, totally.
46:35
And as you say, if we get elevator, the piece that we're missing there is
46:40
like, what the school is not doing, right? What's the system, how the system
46:44
arranged in a way that demands that amount
46:48
of work and burden on parents, and how
46:53
when that happens, we elevate those stories that they do very well with
46:57
that. But also the other side of the coin there, that maybe
47:01
we're not saying, but it implies the deficit views of the
47:05
families who don't do it. Right. Because if this is the example
47:09
to follow and you're not following, well, you must be doing something
47:13
wrong. Looking at the parent, looking more at the
47:17
social arrangements and policies of the school. But I want to
47:21
finish with a little positive note,
47:25
and I ask all my participants, all my interviewees,
47:29
not my participants. That's such a research mentality. My participants.
47:33
It is. I think I've used it a couple of times in here, and I'm
47:37
like, why did I use that word? Yeah, yeah, yeah. It's Not.
47:40
Yeah. Participants in what?
47:43
Anyway, so many questions to ask about that word. But let's
47:48
dream a little. If you will have
47:52
to dream and hope about the teaching and learning students with disabilities, what would
47:56
you like to see in the next five to 10 years?
48:00
I'd hope to see us upend some of the bureaucracy.
48:05
I would like to see us, and I hope that
48:09
my work reclaims advocacy out
48:13
of this sort of legal battle. And what
48:17
are the norms of advocacy? I would hope it tells a counter story to that.
48:21
But I would like to see us reinvent our
48:25
schools as spaces where people actually can
48:29
thrive and have opportunities that are not minimized
48:34
because of their disability presentations, because of their
48:37
sensory needs, because they need support
48:42
with toileting, or if they need medications at certain times of
48:45
the day. I mean, I like to say the things because those
48:49
are the students that people tend to forget in special education.
48:54
I'd like to see affirmation. And I hope that very early
48:58
on students are affirmed in our classrooms are
49:03
places where teachers create cultures where they do belong.
49:06
You know, I think about work that you've done about how do we
49:10
affirm that very early on, where you're shaping
49:14
this identity like you have value, not in spite of
49:18
who you are, but because of who you are. Like, you contribute to
49:23
this classroom and this is what you bring to this classroom.
49:27
And it doesn't start in high school. I'm sorry, no offense to
49:31
best buddies, but it doesn't start in best buddies in high school.
49:34
It starts from very, very early on. How are you curating
49:38
those spaces? You're right. It starts with our knowledge, skills,
49:42
dispositions, all those things. But it also starts with our intentionality.
49:46
We need to intentionally build it in. We need to make sure that our ethics
49:50
are aligned with, again, supporting all of our learners and understand how
49:55
some of our learners are marginalized. What can we do to be creating
49:59
equitable spaces for them? That's what I'd love to see.
50:03
That's a great picture. We're going to leave it there. So we're asking more questions
50:07
and go on a negative side. So we'll leave it on a positive note.
50:10
And thank you so much, Lydia, for being with us. This was a pleasure.
50:13
You're so welcome. Thank you. Federico,
50:21
Thank you for listening to Dive In. I hope you learned
50:25
from this episode as much as I did. Please help us to spread the word
50:29
about the show. See you next time.