S9E14 – The Intersections of Disability, Race, and Segregation

S9E14 - The Intersections of Disability, Race, and Segregation

Andrew: Welcome to the Integrated Schools Podcast. I'm Andrew, a White dad from Denver.

Dr. Val: And I'm Val, a Black mom from North Carolina.

Andrew: And this is The Intersections of Disability, Race, and Segregation.

Dr. Val: So I have to let our listeners know I was unable to attend this interview and I'm so sad that I missed it.

Andrew: It was good, right?

Dr. Val: It is so good!

Andrew: Scheduling was tricky with this one. But you were definitely missed in the conversation. I tried to channel my inner Val as best I could.

Dr. Val: It is so good.

Um, now before we get into the conversation, had you thought a lot about the intersections between race and disability and segregation?

Andrew: I, I mean, I had, I had not. You know, I think. I, I always get nervous before we put on an episode, but this one in particular I, like, feel it. I'm nervous about this conversation. Going into it, I was nervous because I just have such little experience and practice talking about things like disability.

And so, I was very grateful that our guests were, were kind and generous but no, yeah, I hadn't, I hadn't thought nearly enough about it. How about you?

Dr. Val: Same. And you know, as a, as an educator, you know, I've probably thought about it more than you have just from my professional practice. And it's still not nearly enough. And so, the conversation, really opened my eyes and I'm, I'm leaving with a lot, but let's not get too far away.

You wanna introduce who are we talking to today?

Andrew: So, we have two incredible guests today. Joyner Emrick, who is a disabled adult with two disabled kids who has been advocating for disability rights and disability justice for a long time. And actually just recently won a seat on the school board in Minneapolis.

And then Shubha Balabaer, who is not disabled herself, but has a disabled son. And the two of them have, both thought about this topic so deeply for so long, and, uh, have really great insights to share.

Dr. Val: Yeah. So one thing that you'll hear in the conversation is a reference to Sins Invalid’s 10 Principles of Disability Justice. And this really stood out to me, for several reasons, but one that I think connects to our work. And they all connect to our work. But the last one just kind of left me speechless.

Collective liberation: No body or mind can be left behind. Only moving together can we accomplish the revolution we require.

And listening to their conversation and thinking about the ways in which we need to make sure our movement is intersectional, just really stood out to me and I, I will not forget that moving forward.

I'm challenging you not to forget it either, buddy.

Andrew: I will not, I will not. Yeah. I think, you know, the other thing just to kind of set up the conversation, there's so much nuance in this. So, even in referring to Joyner as a disabled adult, there's this question of identity-first or person-first language, right? Like, identity-first is a disabled person, person-first language is a person with a disability and, I…certainly where, where my mind was before this conversation was on person first language. A person with disabilities, a person with autism. And both Joyner and Shubha on behalf of her kid prefers identity-first language, which is really interesting to me.

And I actually went, and so I, so I was like, oh, well this, this feels new and I better learn some more about this. And I actually found a study and we'll, we'll have a link to it in the show notes. But they studied a bunch of autistic people and then people who care for autistic people and asked them about this question of identity-first versus person-first language. And they found that the caregivers for autistic people tended to lean towards person-first language. So “This is a person with autism.” And the autistic people themselves preferred identity-first language, in general. So, you know, it, it was, it was a revelation to me and I think reminded me of something that Dr. Faircloth said, you know, when we were talking about Indigenous and Indian and that, like, what you really need to do is just ask somebody. How do they, how do they prefer to identify?

Dr. Val: And to your point, being comfortable having the conversation will just make us better at it. Right? And so, feeling comfortable to say “What type of language do you prefer?” is something that we can do. And again, with the practice, we'll get better at it.

Andrew: The only thing I, other thing I just wanna name before we, we jump into the conversation, there, there are so many parallels, like you said, like every bit of this ties into racial justice work. Ties into school, you know, work. This is all super relevant and those, those parallels feel really interesting and get my mind going in all sorts of interesting ways. And I just wanna make sure that we are also holding space for the, the ways that disability and racial justice are different. And we should care about disability justice, in and of itself, for its own purposes. Not just in the ways that it, kind of, informs our understanding of racial justice.

Dr. Val: Agree. And I think our, our guests did a fantastic job of making sure we didn't forget it and we did not forget other marginalized identities as well. Fantastic models. I wanna hear from them already!

Andrew: All right. Let's take a listen.

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Joyner Emrick: My name is Joyner Emrick and I use any pronouns and I am a disabled person. And I mean that as sort of like, there's a cultural identity aspect to it, and then also a, I'm systems involved as a disabled person. So I receive home and community-based services using state and federal funding through Medicaid.

And, you know, have both the privilege of, of receiving those services and sort of the hyper-surveillance and compliance experiences that come with being “governmentally systems involved” in that way.

And then I also am the parent of two kids. Both my kids have diagnoses and identify as, as disabled. My younger child has significant disability-related needs that sort of touch every domain of his life and is also systems involved as a disabled person. So we have this multi-generational disabled household, which is really culturally neat.

Andrew: Mm

Joyner Emrick: It's a significant strength, I think, as we experience it in our household. There's challenges of course, as well, but, and I've been advocating for myself and my kids for, you know, my whole life. Their whole lives. And that, that did eventually lead me to run for a school board in Minneapolis where I live and where my younger child is an enrolled student.

And so, I was elected to the school board last fall and just started.

Andrew: Congratulations!

Joyner Emrick: Thank you. And just started that work.

Andrew: Or maybe, or maybe! I'm sorry.

[Andrew laughs]

Joyner Emrick: No, it's honestly, I mean the work is certainly hard and complex and, and fraught in a lot of ways, but I, I can't, the blessing of having the opportunity to serve my city and communities that I'm a part of that are marginalized and communities that I'm not part of that are marginalized, is, I mean, getting to do something on a large scale that helps and supports children is, just feels like a blessing to me.

So, I'm not mad. I'm not mad at it at all!

Andrew: That's beautiful! That's beautiful. There's so much in that I wanna, I wanna come back to but first, Shubha, could you introduce yourself?

Shubha Balabaer: Yeah, my name's Shuba Balabaer. I am a non-disabled parent to, to a disabled toddler. So, my kid is three and a half years old and he's autistic. He's non-speaking or minimally speaking. And at the moment he has high support needs. So, I come at this not as a disabled person.

I am an Indo-Canadian, so I'm Brown. My son is Black, my partner's White. We have a multiracial household. And in my life I've been more involved in the racial justice side. Even before my son, I knew disability justice. I've read some of the major, sort of, writings by Sins Invalid and some of the other folks who have really been uplifting the disability justice movement.

But my primary framework for looking at the world was around racial justice. In my day job, I work for an organization called Media Justice, which is an organization that networks across the country to center Black and Brown marginalized voices when it comes to the future of media and technology.

So, I knew when I had a kid who was Black, I already knew, like, “Great, identity is gonna be a big thing that I have to think about and figure out how I as a non-Black parent am going to center his Black identity.” But it was a, it was an awakening moment. And that actually is how I knew about Integrated Schools.

So I knew about the Integrated Schools organization before I knew that my son was disabled. I was like, “Great!” And then, I had a very different experience of the school system than anyone had ever prepared me for. So, a lot of my understanding, my self-learning (and learning from those that inspire me, like Joyner) is relating what the experience of my son is, to everything I know about racial justice and White supremacy, and how it shows up.

So I think it was an easy transition for me to say this way in which our society dehumanizes certain people is even more so when you add on race and disability as sort of an intersection. And I have experienced it firsthand in the school system, which I think is where a lot of people first experience this.

Andrew: Right. Hmm!There, there's so much here! I'm so, I'm so excited to, to dig into all this and just feeling, like, a deep sense of gratitude to both of you for, for being here and, and engaging in this. I wonder if we start with just, sort of, language check. We talk about disability, talk about disability justice. You know, able-bodied, ableism.

I'm wondering if you can help kind of ground us in the language that, Joyner that helps you feel seen. Shubha, you know, recognizes and acknowledges the humanity of, of your child.

What, what language works best for you when talking about disabilities?

Shubha Balabaer: From what I've learned from disabled folks, I say my son is autistic. I use identity-first language. That is not what everybody wants. But I go that route because I think the younger generation is using that and, you know, the younger generation always, they're always ahead of the rest of us! So I'm like, “Hey, if the younger generation's gonna do that, that's what I'm gonna do for my kid.”

I proudly say that he is disabled. It took me a while. You know, there was internal ableism that I had to work through to get to that point.

And then, I was gonna just mention that the use of “disability justice.” I am very wary. I know a lot of people are very wary about it getting used. It can often be conflated with disability rights. Disability justice comes from a very specific framework that centers the intersection of race and disability. And specifically the way that capitalism is used to treat bodies (All bodies! My body, your body, Joyner's body) as expendable. And how do we exploit the most as we possibly can from people. And as we know, there's a very strong intersection there around race.

And then some disabled bodies are considered expendable, cuz they aren't considered being able to contribute to capitalism. So when I use disability justice, I mean a very specific thing that is different from disability rights.

Andrew: Mmm. Thank you for that. That feels like a very powerful framing. Joyner, what do you want to add to that?

Joyner Emrick: Yeah, absolutely. I agree with everything that Shubha just said, and I think Shubha had mentioned before Sins Invalid, which is an organization that's existed for 20, almost 25 years maybe? And so, they host and, and crafted the 10 Principles of Disability Justice, which is kind of the heart of the framework that she was speaking about.

That really did recognize that, you know, disability rights movement made some really important strides. But by and large, the disability rights movement (which was sort of a part of the civil rights movement) was kind of about getting equal access for disabled people to the systems of exploitation that exist under capitalism.

And really focused on that access for a narrow group of disabled people. The people who would be most likely to be able to comply with what's required by capitalism. Because they were White, or because they had certain types of disabilities, or because they were cisgender and heterosexual, or because they were not in poverty, or because they were not immigrants, or because they spoke English in the United States.

You know, like, myriad different, sort of, pieces of identity that were sort of excluded from that quest for equal access, which is why it was more about equal access than about equity, you know?

And, and then there was this recognition where disabled folks of color, largely queer and trans disabled folks of color. So people, you know, navigating and living a really intersectional experience were like, “But this isn't, this isn't for us. This is not to help us live our lives. And this is not something that's moving us towards liberation.” Right? So I, I consider disability justice to very much be a movement based in liberation.

Andrew: Mm-hmm.

Joyner Emrick: And as, as far as as language, I use disabled and I use non-disabled usually to describe people who aren't disabled. There's a lot of variability in terms of preference for language and, you know, like we say about many communities, a disability community is not a monolith, right? And there are a lot of folks who have different kinds, or sort of categories of disability, who have different cultures within disability culture who sometimes have very different stances on how language is used and how disability is described.

And then, I also think that there are different ethnic cultures, racial cultures, faith cultures, geographical cultures, use different language for purposes that are, are really a part of a larger cultural and experiential framework.

When I think about that, one thing that I think about a lot is how, you know, disabled to me is a noun, an identity. Something that I, you know, that I am and a descriptor, right?

But it's also something that you can experience externally, right? Something can be disabling to you. And I think when we get into, like, intersections of disability and race, something that's, that's really important to be thoughtful about (and really digging into) is how being a Black, Indigenous or person of color in this country, the United States, can be disabling in and of itself depending on what systems a person is interacting with.

Andrew: Mm. Mm-hmm.

Joyner Emrick: And then, something as a, a White disabled person of White disabled kids that I'm having to, sort of, think a lot about to be effective in my work is, you know, how am I not imposing standards based on my experience as a White disabled person (who is not disabled by my race), onto folks who have a really different, like, different dimensions of that experience.

That, that I cannot view my, sort of, take as the, the one correct or accurate take. Right? So, those are some of my thoughts there.

Andrew: Yeah, yeah. That's, that's, that's really powerful because I feel like I have lots of fluency and comfort around with racial identity that, that all Black people do not think about things like school integration in the same way, right? But that the disabled community, obviously (when you say it, it’s obvious), but like, is also not monolithic.

And, and one of the things that was super interesting to me in preparing for this interview is, one of these places where the disabled community does not have a monolithic view is the difference between the medical and the social model of disability. This is something I had no framework around before preparing for this interview, but I'm wondering if you can help us, kind of, un unpack that this difference between the medical and the social model of disability.

Shubha Balabaer: Sure. So this is as a person who's newly had to learn about disability and learn about these models from people like Joyner. The medical model of disability, is something exclusively in your body that should be fixed, if possible. Just like, you know, I don't know if, if this is actually right, Joyner you can correct me! But, if I have a cold, my goal is to not have a cold anymore. I don't wanna have a cold. It's, it's a bad thing going on in my body. It's not an identity, probably. I wouldn't identify as person with cold. It is an illness. You know, it's something to be, to be fixed.

My understanding is that the social model of disability says two things, I think. One is a disability is an identity with a culture, or many cultures as, you know, culture tends to be. And also as Joyner said, it's something that changes based on society. Society has created a disability for me.

So an easy way to think about it is, if you're deaf and everybody around you is deaf, or you live in a country where a hundred percent of people are deaf, is deafness now a disability? Or is it only a disability when everybody else around you is not deaf?

So the social model, I think, is coming from that perspective of, like, society has created and imposed a disability on you. I think, (the part that I don't wanna get wrong) I think there are some people and some people with certain disabilities who say, “It is medical to me. You could change society all you want, and I would still have this disability.” And there are other people who are like, “It's, it's social for me,” you know. And there are people that are like, “It's a little bit of both!” So I hope I, I reflected that properly.

Joyner Emrick: Yeah. I mean, I don't think there's an easy answer. I think the complexity of, you know, “Are some disabilities medical?” Okay. So I have, one of my diagnoses is generalized anxiety disorder. And like, you can take it. You can kill it with fire. Like, I don't want it! I have no cultural identity around it. It doesn't, like, give me a sense of belonging that I wouldn't otherwise have. It's not something that I hold, you know, close to me as like an integral part of who I am. It's something that's incredibly limiting for me. And it's really hard to find workarounds to create the access for that one in a way that it's not necessarily as difficult to come up with innovative ways to create access for some of my other disabilities.

So, you know, I, I do think it, it depends on the condition and then it, it depends on the experience of the condition.

Andrew: Right. There’s, there’s nuance here, right?. Both that there are elements of a disability that may actually be medical in nature, and other elements, that are, I guess experienced more culturally. But also, I guess that part of the nuance comes from our ability as a society to, like, create spaces where certain conditions may feel more or less like a disability, right? Like, ways that are really more about society disabling someone, rather than someone being disabled.

And I guess this makes me wonder about our education system, right? I feel like, correct me if I’m wrong, but I feel like we take more of a medical model approach when we think about things like, special education services in schools. Is that right?

Joyner Emrick: Yep. This is what we see happening with special education where we've created an educational system based on a medical model of disability, which is “We'll fix this disabled student who comes in so that they can participate normally in education,” right?

“And if there's something about them that we can't fix, or we can't fix it fast enough, then we'll retrofit education to the smallest extent possible,” right, “so that this student can participate while we're fixing them. Until they're all the way fixed.” And then if you have a kid like my kid and, and I think like Shubah's kid, where you look at the kid and you're like, “There's nothing we can do to, or for this child to make them appear like a not disabled child,” right?

Then the system just gives up. It gives up very early. And not only does it give up on providing a meaningful and high quality educational experience, but it gives up on providing safety. Physical safety.

Whereas in a social model of disability overlaid on education, we would, we would say, “Okay, well we're refreshing the furniture in this classroom. What are all of the potential needs for seating that we can possibly imagine, even if those kids aren't here now?

Andrew: Right.

Joyner Emrick: And let's, let's put a diversity of adaptive seating in the classroom.” Or, or, “What are the different assistive tech tools that a student might need to participate in classroom routines?”

“Let's not wait until we have a student with a particular IEP that says they need a pencil grip, or they need headphones, or they need a desk slant. Let's just put those materials into the classroom and the kids who need them can use them.”

Andrew: Whether they have a official diagnosis, whether it's written in a plan, the kid for whom that is going to be helpful, let's give that to them so that they can thrive.

Joyner Emrick: Yep. And we have this idea that assistive technology - and assistive technology isn't just like a high tech, like a computer or an iPad or a, you know? Like, my sunglasses are assistive technology, right?

I'm wearing sunglasses right now and I wear them most of the time and they're assistive technology because they modulate my experience of light.

And so, we have this idea that this is like a, a special privilege. Like a prize that a person can earn, but only if we've exhausted every way that a person could do something without the support of assistive technology. Right?

And the reason that this is important is because the reason that we don't put tech like that in classrooms is because we're afraid that kids that won't need it will use it. “They'll take advantage.” Right? As though this is something that is such a, a privilege to be able to have something to support your access.

Andrew: Mmm. Mmm, right.

Joyner Emrick: That, like, “it would be abused by children.” The reality is that, you know, kids might be curious and they might wanna explore and try things out, but once they kinda get a feel for what's there and, and what they need, kids don't use it if they don't need it.

You know? Like, they don't wanna make things harder for themselves.

Andrew: Yeah. I mean I can imagine certainly like, you know, assistive devices around communication, how might we tap into the creativity of all sorts of students who may not technically need it, but could find new and different ways to communicate if they were exposed to these, these other tools?

Shubha Balabaer: Yeah. What Joyner just said, reminded me too, again, I link everything to capitalism. My pessimistic view is that the education system is saying, “Who can we turn into a productive worker? and if we can’t turn you into a productive worker, we're going to, you know, figure out a way to have you be to the side,” right? Which obviously, even as I say it, I'm thinking disability, but this is true for racial segregation as well, right?

An interesting thing that's happened for me (and I know we're focusing on school, but some of the listeners might be interested in this), I also am Director of Operations, like I said, for my nonprofit. A lot of what I'm learning in my journey, I'm applying to my work. So, an example is that we've actually started to have a list of accessibility platforms. Things like speech to text, text to speech, things for folks with ADHD that we just offer to all of our staff. You don't need a diagnosis! You know, a lot of people benefit from some of the tools that folks with ADHD might need.

We have far to go in the workplace. I would not say anyone could show up at my work and work, but we are trying to figure out how do we embody what it means to be truly inclusive without needing, like an ADA diagnosis that you go to HR and you say like, whatever.

And it's hard. It is. It's hard. But we're trying our best.

Andrew: Both of you are now trying to raise children with disabilities in a school system, and that comes with all sorts of challenges, I'm sure. How did you kind of find yourself digging into that Shubha?

Shubha Balabaer: I'm excited to tell this just cuz I think almost no one knows this happens, cuz I did not know this happens. So my son's only three and a half, so I actually don't have the experience Joyner has of actually grappling with the public school system.

I'll just share what my story was. Okay! So I got, got a son. He's awesome, he's great. Around 18 months. He was an early intervention already.

Andrew: What's Early intervention?

Shubha Balabaer: Oh yes. Early intervention, I think it's across the country. It's a free service up until the age of three years old where your child can get speech therapy, occupational therapy, physical therapy. I don't think you need a diagnosis, you just need a delay.

Andrew: The idea is you go to your six month, your nine month checkup, your one year checkup. There's some sort of delay, and then based on that, either through a referral from your pediatrician or because you are given this information, then you look for these additional services.

Shubha Balabaer: Yes. Yeah, basically. Our doctor was just like, I noticed this you should get some services. We did. In New York, again, I don't know much as much about other places. When you turn three, that's when it switches from Department of Health to Department of Education, and that's when everything gets bad.

So once you make the switch, you get evaluated. Now some people consider this great, but in New York there are preschool placements that are, what I call segregated, but folks would call either specialized or self-contained for disabled kids. So certainly there is a great aspect, which is if you need free childcare, you get free childcare, right? But the free childcare comes at this cost of, you know, them being in this placement.

So he got his evaluation. And then we got told by the administrator based on the scores of his evaluation that he would be placed in a segregated classroom. So, I already knew, ethically just the idea of someone telling me “We're segregating your Black kid.” I was already like, “No you're not! No, you're not.” But later also found out that there's decades of research showing that being integrated benefits everybody, including non-disabled students. And it benefits the most disabled students the most. So if you were someone like my son, you will benefit the most from being included.

And unlike other parents who could choose, right? Again, at least in New York, if you're a parent of a non-disabled kid, you could be like, “Oh, do I want my kid to go to like that school that focuses on play-based learning? Or that school that's really diverse racially? Or maybe that school where there's a lot of gay parents?”

For us, we had one choice. It was the disabled preschool that's a 90 minute bus ride away! Like, “Do you wanna go to that school?” We ended up saying no. And we're basically probably gonna be unschooling because I'm stuck in a situation where I do not want my kid to be in a system that is segregating him, especially as a Black disabled boy.

And the interesting (or the infuriating) thing about the New York system and the way it segregates is once you start to draw lines, you have to draw a lot of lines, right?

So once you start to say, “Disabled kids and non-disabled kids need different things, we're gonna put them in different schools.” Then you say, “Oh, but this disabled kid, and that disabled kid needs different things. Okay, boom. We're gonna create a third school.” We, in New York, we have a system where there’s, it's comical in a sad way, watching parents really scramble to be like, “Would this school take my kid?” Oh no. That school takes disabled kids who are non-speaking but don't have behavioral issues. That other school takes, disabled kids that are speaking, but also are good with emotional regulation.

And, and then if you think about it (as I often do), how you're disabled can change over time. A non-disabled kid can become disabled tomorrow. Right? I, I can become disabled. I probably will become disabled at some point in my life, right?

That is very difficult. And where race plays into it, is that we did first put our son into an Afrocentric preschool. That was really important to us. We then ended up being stuck in this position where we wanted a school that was explicitly neurodivergent affirming. What I mean by neurodivergent affirming is that they see autism as an identity. They know the latest research around how to support sensory needs. We started my son using a high-tech device, very young. So you know, a school that has the resources to know about it or to at least learn from us.

We ended up having this really difficult situation where we basically gave up on the public schools. So I'm even talking about private schools. We basically could choose schools that were primarily Black, but don't have the funding to be able to put in that time to support him. Or schools that are primarily White, but did have the teacher to student ratio and the time and the funding to support our son. We ended up having to choose an almost entirely White school, which was the exact opposite of everything we've ever wanted for him! Yeah, so that was, like, very difficult. So I think race has been very integral to this as well. Mm-hmm.

Andrew: Ah, yeah, it's, it's disheartening, I'm sure. You have lived with it, but just, you know, sort of hearing that, there is, there, there isn't a good choice. You have no good options. You are picking between options that are ignoring some piece of, of your child's identity and having to pick, like, which part of your kid's identity are you willing to sacrifice in this phase? That’s hard. I’m sorry.

Shubha Balabaer: Yeah, yeah! Yeah. No, it is. I do wanna be clear about this part is that, cuz I think people don't get it. There are things called integrated schools. We were not allowed to put our son in those integrated schools that we would've had to sue the Department of Education.

And I say that because many parents have said to me, “Oh, what about this school? It's an integrated school!” And I'm like, “Not for my son!” Nope. Like, for your kid. Not for my kid. So, yeah.

Andrew: Yeah. And I just also think about the resources and education and time that you have to dedicate to this, and still the challenges. And think about all the, the people who don't even have that kind of, you know, level of attention to it to give as well. Yeah. We're failing a lot of kids.

Yeah. Joyner, tell us, tell us your schooling story. I'd love to hear a little bit about, I don't know, what, what school was like for you, if you're willing to share. And then, and then how you've been navigating it for your own children.

Joyner Emrick: Yeah, well, I, school was awful. There were a few, there were a few cool things. One, one thing that I, as a school board director, I tour a lot of buildings, right?

And I'm a graduate of the school district where I now serve. So I have been in some buildings where I was a student. And it's wild, because when I went to my elementary school I was like, oh, I remember all of this.

And, and by the time I was at my junior high school, I was like, I know that I went here for a couple of years, but I'm, I, I think I blocked most of it out! Cuz I have, it's, it's actually like, I'm, I'm laughing about it, but it's actually been, you know, a little traumatizing to be back in some of those spaces.

And to realize how much I don't remember. And I, I didn't know that I, that I didn't remember so much.

So, I was receiving medical services was related to my disabilities as a youth, but I didn't have an accurate diagnosis until 11 years ago.

Like, I had hospitalizations as a student in behavioral health units, but I never had an accurate diagnosis and was never identified for special education. So I, I just di, had divested. I divested from schooling very, very early. And I just decided that if, if it was actually important to get an education, people would be educating me.

You know? So, so I think that I was just really aware, really from like upper elementary school, from, like, probably fifth grade or so, that like, this can't be as important as everyone is saying it is. Because if it was actually important, people would be noticing that they weren't reaching me. People would be noticing that I am, kind of, fading away from education.

I liked choir. And so, as long as I could be participating in a choir, I did okay. I think some kids have the, the, that sort of connection with athletics. But you know, that was, that was about it for me. And by high school, when I didn't get into choir and then I was like, “Well, that's it,” you know?

Andrew: “I don't belong here anymore.”

Joyner Emrick: Yeah. That was my experience. And I do think even though it, it feel, it feels kind of boring to me to talk about, I think it does really inform, I mean, so my older child is 19. So, they've graduated, they're done with K-12 education, and they did not attend public school one day in their life.

They went from a private preschool to a charter school to homeschooling for six years. Then back to a private school for junior high and high school. And really small, non-traditional schools they were in. Because I was like, I'm not making you do that. Like, they did that to me! We're not. Mm-mm. You know what I mean?

So even as a single parent in acute poverty, housing insecurity, food insecurity, we found, I found a way to not put my kid in public school. Which I don't use as, like, a rubric, but I just say to, like, demonstrate how important it was to me to try- this was the trauma that I was trying to protect my child from experiencing, you know?

And then when it comes to my younger child, you know, we entered public education similarly to, to Shubha in that we started with early intervention. It's federally legislated, it's part of the IDEA, the Individuals with Disabilities Act is that zero to three early intervention programming. It's free to any family whose child qualifies.

So, my child is autistic as well. It's very typical for a family to be offered or recommended to a treatment program for a child as young as one or two years old that is 25 to 40 hours a week of center-based treatment. That is something that (and I'm gonna be really clear, this is my opinion, but it's also an opinion that's, that's pretty well held by the disability justice community and the, the folks that I'm aligned with), this is a service that is supposed to make a child learn through compliance-based operating conditioning to perform as non-disabled.

Andrew: Mmm! Mmm. Say that again. That's powerful.

Joyner Emrick: It's a, a service that's offered for the purpose of teaching a child through compliance-based operant conditioning to perform as non-disabled.

Andrew: Right.

Joyner Emrick: Right.

Andrew: Right. This is the, the medical model of disability. This is saying there's something broken with this kid, but if we get them early enough, we can train them to behave as if they are not disabled.

Joyner Emrick: Yep. Yeah, it's incredibly predatory. It uses scare tactics on parents and caregivers in really unethical ways. It's a, it's a private industry that's incredibly lucrative. So these people are making a ton of money. So, you know, it's, it's, it's pretty sinister kind of no matter what angle you look at it from.

And as somebody whose child, my younger child was recommended 25 to 40 hours of this treatment at age two by our county. So, by the government. Okay? Who is, who is overseeing these services. So there's a, like, a surveillance and compliance. So we weren't told that, that we would be required to do this. Right? But, my family's in poverty. We live in section eight housing. Right? We always have to be aware that, you know, if, if the county says “You should do this for your child,” and you don't do it, and later you have a problem, right? Later there is a 911 calling a behavioral crisis or something like that, and they can go back through this paperwork and say, “We told you and we would've paid for it.”

And it was documented, you know. So it's, it's, there's a, there's a lot of layers to sort of the risks that you take in trying to protect your child from this harm. Right?

And, and I can't speak experientially from the specific risks that families of color have to consider. Okay? Particularly families where the children are Black have to consider when weighing the risks and benefits of complying with this or doing this. Families who are trying to find a way to minimize the harm. And I think this, this really ties into what Shuba was saying about their experience with their child in early intervention. There is not the expectation in families like ours that we are going to be able to prevent all harm to our children. There is only the expectation that we are going to basically give up everything else in our lives to try to prevent the most amount of harm possible. Right? My, my wife had to leave her job at the beginning of the pandemic as a bus driver. You know, it was a union job. We had a pension, we were gonna be homeowners one day.

I will die never owning a house now because what we had to trade off to have enough grownups here to keep my child safe (right?) is a financial security in the future. Right?

Andrew: Mmm. that's tough. That feels like an impossible choice. I’m sorry you had to make it. So we have this program, early intervention, it's free. It's required by the federal government. And I guess it sounds like maybe it’s a bit of a mixed bag, right? It’s good that it is providing supports to anyone who needs it, but also some of those supports are maybe somewhat problematic versions of what it means to actually provide help, right?

And then, you, you transfer from this universal program, early intervention, into a more traditional K-12 phase. And I’m wondering what that transition was like, Joyner, for you and your family.

Joyner Emrick: So we self-referred to early intervention when, when my child was two. And then went through the next sort of phase, which is kindergarten to 12+. And, you know, each of those transitions you're transitioning to a new team.

And, you know what, what I found is that the educators that we worked with (and so I'm talking about the licensed special educators, the general educators. Also the related service providers, so the speech therapist, occupational therapists, school psychologists. You know, people who are really doing on-the-ground work) were generally pretty great to work with.

Now, through their own admittance, they had different levels of knowledge but pretty much everybody was gay/great/gain. And what I noticed was that the system itself did not resource these educators to be able to maximize their ability and even their willingness to serve my child in this way.

So, for instance, my child has a homebound placement which means that his educators come to our, our home to provide his educational services. He can't leave our home, so he can't go to a school building at this time. And I was in an IEP meeting and talking and, one of the supervisors there said, “You know, he's a, a child who has difficulty engaging.” And I, I interrupted her and I said, “My child doesn't have difficulty engaging.” Right? He's very easy to engage. He's ex, like, he– Ask, ask the speech therapist who's sitting right here, who comes to our house an hour a week, you know, how easy he is to engage.

If our way of teaching isn't engaging to him, that's a problem with our instruction. That's not a problem with my child. Right? But when you think about how these problems with our education system will be put onto a little child, right? That is, like, a systems embodiment of that medical model. “The problem isn't the way that we provide instruction.

The problem is your kid,” right? “And if your kid could just do a better job at performing as non-disabled, then maybe we could teach them,” you know? And I think that this is this sort of, like, assimilation and compliance that along with, you know, capitalism and productivity that Shubha mentioned before, I see our, our whole school system being built on.

There's this idea that our, our students will conform culturally in terms of their embodiment, in terms of how they learn, and what it looks like, right? They will conform to a norm based in White supremacy and ableism, and settler colonialism. Right? And that if they are deviating from performing that norm, the job of school is to get them through usually compliance, punishment, under duress, right? To, to comply with performing those norms. And if we try to get them to comply to performing those norms, and they, they fail at doing that over enough time, then we throw them away. Then they're disposable.

Andrew: Then “they have failed.” Not “We have failed them,” but then they have failed.

Joyner Emrick: Yep. And the, the problem as I see it, and, and I experience this as a, as a parent in trying to get people to see my kid, is that number one, the number of children that actually can consistently perform this very narrow norm is small. This is, this is not a system that's working for very many, if any, students.

Right? And number two, trying to strip students' cultural identities down to the way they move their bodies, in order for them to earn a public education is violent. It is violent! It's not even just, like, wrong or unethical. It is an act of violence and one, it is being done in this systemized way, specifically to children of color, specifically to disabled children.

It is an act of racial violence. It is an act of ableist violence, right? This is part of systemic oppression. And it is not something that we are doing in some administrative process somewhere. It is something that we are physically doing to the bodies of children every day.

Right? I mean, we are physically doing it. When we demand bodily compliance and physical performance of a specific norm. We, we call it behavior, we call it Positive Behavior Intervention and Supports. Right? Okay. But we are also doing it to disabled children and, and extremely disproportionately to disabled children of color when we use restrictive procedures like restraint and seclusion.

So in my state, Minnesota, 15,000 incidences of restraint and seclusion were documented to have been used last year in schools. On just– 15,000. And those are the ones that were correctly reported.

Andrew: That were reported. Ugh! Yeah.

Joyner Emrick: Okay. So when we think of, like, the, the, the physical danger. Like, when I, when I'm afraid of the day that my kid can leave our home and go to a, a school building, I haven't even gotten to like, “Is he gonna get good literacy education? Is he gonna get good numeracy education?” Right? Like, I care deeply about those things. Like those are passions of mine! But I'm like, is he going to be sexually assaulted? Is he going to get murdered? Is he going to be abused?

Is he going to be in a room with people who will be able to say if something bad happens to him? Because we know that what keeps students who have limited communication ability safe at school, is to be in a space with people who can report, but there's no power differential, right?

Because, and I love educators and, and so I hope educators, if they hear this, will, will take this correctly in the spirit that it is given. Statistically, educators will protect each other.

You know? So, we need, we need integration first and foremost for our students, because being with peers who can communicate is the number one thing to keep them safe at school from some of these horrors that we have to consider.

Andrew: Right.

Shubha Balabaer: Two things that I feel, like, are really important Joyner just said that (and I wanna hammer this home though) in terms of people understanding how this works.

So, the purpose of these special education classrooms (the one they recommended to my son) is supposedly to teach him, you know, certain skills so that when he does the assessment next time, he meets enough skills to be put in a less segregated classroom. So, for a three year old on the list are things like Joyner said, like, “Does he engage in this particular way? Does he stack blocks? When you say farm animals, does he point to them,” you know, all of these things. So that next time they'll do an assessment again and be like, “Is he more typical? Has he become a little bit more typical to go into a regular classroom?”

And this is what I mean when I say I constantly compare all of this to racial justice. I'm Indian, so I'm gonna use me. Imagine we did that to Indian immigrants, kids. So when they come to America, we put them in specialized classrooms and we say “Once your accent is not as detectable, and if you could eat less smelly food, then you can only,” I can say that! Cuz I'm Indian! “If you could eat less smelly food, then you'll meet enough boxes for us to allow you to be in a classroom–

Andrew: –Take you out of the Indian school.

Shubha Balabaer: –with the non-Indians!” Exactly! “You could go to the White people's school! Wouldn't that be awesome? You can go there. You could speak like the White people. You could eat like the White people! So much better.” And it's obviously ridiculous, but we allow this to happen and not that many people that I know of (outside of Joyner and a few other people) are as enraged as we should be for what is an obviously enraging thing.

And I wanted to go back to something Joyer said, cuz I think this relates to, like, why integration and I, and from what I know of Integrated Schools, why all of us want integration. So Joyner was talking about that fear, which I also have too, that one day my kid is gonna be taken away from me and force, forcefully institutionalized because he does something that others perceive as threatening due to his disability and his race.

He's only three and a half. He looks five. He's very big for his age. And I should say I live in a neighborhood that is gentrifying. So we have a lot of privileged White people in my neighborhood. I am starting to see the thing where other kids look at my son. They're confused by him. They're confused about why he's not, like, responding to them or interacting with, with them. It's going okay so far cuz, everyone's under the age of five, you know?

So it's not like this–

Andrew: The stakes are low right now.

Shubha Balabaer: The stakes are low. And I, every time it happens, I think to myself, “If only he could be in school with them.” Like, if only they, they could be like, “Oh, that kid, that kid's a lot like, you know, Johnny who's in my class!” And then what happens when he's 10? And then 15? What would it be like if any of the non-disabled people in my neighborhood knew Johnny in their class who is like my son. And then when they see my son, they don't see a threat! They see a peer, they see a community member.

So to me, I think that the impact of segregation, both in the schools (like Joyer said), but outside of the schools in the community, where my son literally lives! We are members of the community. If he was integrated just the way we wanna integrate our White gentrifiers and our Black folks who've been in the neighborhood, what would people see?

Andrew: Ooh. That, yeah. That is such a powerful idea because, you know, it's easy for me to think about the ways that that exposure would benefit a kid like mine, right? It's easy to think about their world being expanded through finding their shared humanity with a kid like your kid, Shubha. Right? But what you're saying is that (talk about different stakes, right?), but this act that we often talk about - finding each other's shared humanity - that, that it’s possibly, like, a life and death situation for your kid, right? That, that could be the difference between someone seeing your kid as a kid versus a threat. That's . . . yeah. That's heavy.

And then, so then when we think about this idea of segregating disabled kids, like, the, the stakes feel really high, right? And, and my guess is that, that we don’t segregate disabled kids proportionately. Is that right?

Shubha Balabaer: Yeah. In preparation for this podcast, I did some research on a few different states to find out are Black disabled kids statistically more likely to get segregated? Because in theory, the federal law is behind us, but the way the federal law is implemented, we still get a lot of kids like mine and Joyner's kid being segregated, even though we're supposed to be in the least restrictive environment. And yeah, the answer (not shockingly), White kids are more likely to get a disability classification in ways that benefit them, that allows them for accommodations, in the general education classroom or to be put in the integrated classroom that I was talking about.

White kids are way more statistically likely to get that as a proportion of their population. And Black kids and Latinx kids are way more likely to get fully segregated placements like my son was offered.

So that means that, again, the White folks and the Asian folks actually as well,who are in the community, who are making decisions about when to call the police. Who are, who are making the decisions about, “Do I feel harmed by this person?” They're in the community with folks that they've just never seen before. You know, specifically the Black disabled kids that are getting segregated at a higher proportion than their White disabled peers. So that, you know, that to me is a big deal.

And on the positive, like, my son is awesome! And I, it makes me sad that no one is getting to see him. He, if you met him, you would love him! He is so cool! I'm like, I want other kids to get to know my awesome son, you know? And have that joy and privilege of getting to know such an awesome kid.

Andrew: Yeah. I mean, you talked about your example of, of newly arriving immigrants from India. Like, you can see the kind of preposterousness. We don't do nearly enough, but there is broad cultural acceptance around the need for, you know, ramps, for elevators, for access for physical disabilities. And I would attribute that, I'm sure to, the kind of disability rights movement, the ADA, like, there, there's a way that we've kind of planted seeds around physical access to spaces that, again, we don't live up to the way we should, but, no one would expect that, “Okay, until you can walk up these stairs, you can't come to this school.” We would see that as obviously a, a problematic thing.

I'm, I'm wondering, you know, the link to less visible forms of disability. Probably most people have seen somebody in a wheelchair. Most people have not had any meaningful interaction with someone who is non-verbal. That speaks a bit to what you were talking about too, right? The power of being in a truly integrated environment is that you, you gain those experiences. But, I don't know if you have any sort of thoughts either, either of you on that kind of, you know, what would it mean to create a society where we viewed the less visible forms of disability in the same way that we think about, oh, that person needs a wheelchair, or, oh, that person needs crutches.

Shubha Balabaer: I will say that for my son, his disability is very visible. He has a visible disability. My hunch is that it's, it's the difference of how I've been saying, like, how far you are from typical. So like, yeah, she's in a wheelchair, she talks the same way other people talk! She thinks, like, the same way other people think. She, like, she is very proximate to typical, except she's in a wheelchair! So she can thrive in, in a typical education system if she's given a ramp.

So I do, I pro–it's a lot of work from the disability rights advocates. My son interacts and communicates and takes in the world in ways that are totally different and very visibly different. And so, like Joyer said, the way that someone would need to teach him and engage, you would have to be creative.

And there's a, there's an interesting line, quote I heard from someone (but I don't remember who) that was, like, in response basically to all these people saying like, “Well, I've never dealt with a kid with a feeding tube, so I can't teach your son.” I, like, none of us did either as parents! We learned how to! I didn't get a master's degree in how to deal with this. And I engage my son really well. Like, we, he learns a ton from me.

So, I think that part of it is like what we need to do (and maybe why I'm so passionate about kids like my son and Joyner's son being integrated) is what we've been doing so far (and by “we,” I mean the systems). we're like, “Here's normal, let's move a little bit outside of normal and then integrate this group.”

Great, okay! And lately I've been comparing it in the racial justice sector to the way that the, the country explicitly “created” the Asians to be model minorities in an explicit attempt to say, “We are not racist!

We, and so you Black people stop complaining. Look at all the Asians we got here!” I am one of the people that that benefited from that.

Andrew: “Autistic people stop complaining. We have ramps. We care about disability justice. Look at, we put those ramps in, so, so look, we do inclusion. What are you complaining about?”

Shubha Balabaer: Exactly, or even “We've got a fidget toy here and we've got a trampoline you can jump on.” That's not gonna cut it for my son. You can't hand him a fidget toy and then be like, “Great. Done.”

Someone who both Joyner and I love named Shelly Moore. She has this video called, like, Special Education and Bowling. Why is special education like bowling? And I share it with everybody cuz she basically says the way you knock down all the pins is you aim for the two pins on the side. You don't aim for the middle pins or the pins just to the side of the middle. You go for the, the pins on the two ends. And once you do that, all of the pins are knocked down.

I mean, we're not trying to knock down kids, but hopefully the analogy works!

[Laughter]

Like all, you know? You win the game! Right? You know? Great. Yeah.

Joyner Emrick: Yeah. What I hope people will come to understand is that, I know in my district, about 18% of students receive special education services. So it's not actually, like, a very small group. It's a really significant number of students. But I think that if you haven't had personal experience with special education, either yourself or your child, or a close family member. Or maybe you're an educator who works in that realm. You know, it seems very, it's very separate. And that's on purpose, right? It's very siloed on purpose.

So I think when I advocate for special education, I fear sometimes that I lose people because they might be working off the assumption that number one, this is very separate from everything else. And number two, it's, it's only a very small number of people who are impacted, right? And, and neither, neither of those assumptions are true, but, but what is even more sort of profound and important is exactly what Shubha was talking about with Shelly Moore's “outside pins” metaphor, which is that if we can figure out how to effectively teach and include, and I, I mean really holistic. I'm talking about academics. I'm also talking about culture culturally sustaining practices. I'm talking about mental health and, and wellbeing, right? Like, if we can really figure out how to meaningfully educate our kids who have the educational needs that are furthest from sort of what we've normed, okay? Then we've captured everybody. Then, then we've devised something that, that is expansive enough to catch every student in an entire district or city or state or country or system.

And so I think we have to be looking at our learners who have the most divergent needs.

Andrew: Right - that the education system we would build that would actually serve the kids most in need, would actually do a better job of serving all kids.

Joyner Emrick: Yeah. And then the other thing that I will say, kind of going off of your sort of commentary, Andrew, about ramps and, and physical disabilities and sort of like we, “We got that far and then where's the, sort of, the next, the next place that we need to go.”

I still maintain that really all of our systemic forms of oppression, like, come to a head and “Will you bodily comply when I tell you to?” Right? There is an authority, whether that authority is a teacher or law enforcement or government or whatever. The boss. “When I tell you, you do this thing with your body, are you going to do it or not?” Right?

When I talk about disability justice being a movement toward liberty, right? The furthest a person can be from liberty is not owning your own body, right? This is what was experienced by enslaved people, right? And it, it was not only a crime to pursue the liberty of owning your own body as an enslaved person, it was considered a mental illness.

It was considered a disability that the only thing that would cause an enslaved person to seek ownership of their own body, that liberty, would be if they were mentally ill. Whereas a White person wanting liberty for their own body, not a disability, not a mental illness, not something that's wrong in the medical model with somebody, right?

So we see how as these forms of oppression have developed, they've developed in an entwined way, which is why they have to be dismantled together. And so I think, you know, people who have physical disabilities may not have bodies that can comply. Right? But they also have an understanding of that compliance. And there may be, like, attempts to comply. And when we see people with intellectual or developmental disabilities that impact their ability to physically comply when directed, right? It's not that they are resisting, it's not that they are choosing not to, it's that they cannot. Right? Those people are “dangerous.”

Now we've decided that those people are dangerous. The thing is that if you can't get someone to comply physically with your direction, right? Which all parents give their kids directions and expect some amount of like, “Go get your shoes, we're running late!”

That's, but if, if someone can't do that, then what are the conditions that have to be created for safety? Well, I know what they are. Shubha knows what they are. We've created them. It is possible, right? To create conditions for safety that, you know, are pretty effective. But we would have to completely transform the way that we do school if we were going to allow people to express the embodiment of their identities and keep everybody safe.

And we'd have to let disabled people look disabled. And we'd have to let folks of non-White races have their racial embodiment. And folks who are, you know, newcomers not from the United States, have their embodied cultural experiences, right? Like, we'd have to stop policing bodies. But policing bodies, right, is what gets us to the state sanctioned murder of Black men in this country, right?

Like it goes all the way to the top. It's who we are as a nation.

Andrew: But if we did, that benefits everyone, right? Like my White cisgender daughters are, are better off in an environment that is created to allow the embodiment of everybody. Even if they could conform, they are quite good at conforming to the norms that society has for them, because those norms were built with them in mind, right?

But, like, there is still a cost to them. It's, it's obviously in no way the same cost that it is to either of your kids, but there is a cost to them, right? They lose out. What, what kind of creative people could they become in an environment which allowed –I mean, it's part of the reason that they're in the schools that they are in and not in White segregating schools is because there is more, not not enough, but more breadth of who you can be. Breadth of possibility for them to, to explore and kind of live in, live into.

And I think if we had a, an education system that was designed for the outside pins, that is designed in the most inclusive way possible, like, it lifts all boats. That's not at a cost to anyone. That actually benefits everyone.

Joyner Emrick: That's right.

Andrew: Mmm. Okay, so we clearly have a lot of work to do in the education system. And that’s gonna take time. But if we want to help our kids do a better job so that they can be better prepared to create better systems, what advice do you have for parents, caregivers who, who care about disability justice?

Shubha Balabaer: Yeah. I've thought a lot about what it would mean if I was a family that did not have my kid, but wanted to raise my kids in a disability justice framework.

And, and I think it's really simple. I don't think it's read books so that your kids know that they're disabled people. I mean, do that. Great.

Andrew: Yes, do that. But don’t only do that.

Shubha Balabaer: But that's disability awareness. Do that. Don't only do that! I think the thing that I aspire for the next generation to do (thinking of your daughters, or like my White cis male partner, you know, and like what he, what the cost was to him) is to normalize asking once a day in your household, “What do you need? What do you need right now? What does your body need?” Normalize that literally every single body has needs, not just my son, the, and that the needs change. And normalize that that's okay. And there's a phrase, if your needs are being met, you say, “My needs are being met.”

You don't say, I don't have any needs right now. We all have needs! Like, you know, maybe your need is to be able to sit on a chair, but you got a chair! Great! You had needs. They're being met. Yeah. But I feel like that is my, my aspiration for the next generation. It's not that they sit there and they see my son as a disabled person.

Great, “We're accepting you as a disabled person.” But is that there's a total revamp of just like, literally all of us have bodies! All of us have needs. Sometimes our needs are met very easily because our bodies tend to have needs that are normalized.

Andrew: Because our society is set up to meet those needs, right? Like, the society has been crafted to meet those needs in ways that it is not to craft others.

Shubha Balabaer: Yeah, exactly. Exactly. So it's been a practice for us. I will say as a, as a person in my forties and my partner's in his fifties, we've really been trained to pretend that we don't have needs.

And it's a practice that I think we can do with our kids of, like, everyone has needs. And then when my son shows up in a place, oh, it's another person with needs. Just like me. Great. Yeah.

So that, that's my advice to parents if they want, you know, an easy way to like, change that framework.

Andrew: A next step. Yeah. I I really like that. I really like that. Yeah. Joyner, what, what do you have for, you know, parents who are listening who may be not in this moment having either themselves or a child with a disability, but care about disability justice? What steps can we take?

Joyner Emrick: I was actually just musing about this the other day and what I wanted to ask in terms of like an allyship step, you know, number one, have conversations about special education, right? Be, be the person who is at the school open house or at the school picnic or, you know, at the student placement office or whatever. And, and work in like, “Hey, so when kids have disabilities, how does this work for them?”

But beyond that, whenever you get the opportunity, ask if disabled people are a part of designing special education services. Because I think this is, this is this, this next piece that feels really important for me.

We know collectively (right?) that if we want to know if we are doing well by a group of students, we need to be looking to the adults and the community that share culture with that group of students as our, our metric. Our rubric, our leadership. You know, if we wanna know if we are serving Black students, well, we need to hear from Black adults. That might be the parents of those students. That might be Black educators, that might be community partners, but they're gonna know better than I, as a White person, am gonna know. Right?

And I think that we, we see this because race is largely passed down generationally in families. And a lot of family cultures (right?) are passed down, faith and, and those types of things. Disability is not always passed down. And historically our movement first centered doctors, medical professionals who treated disabled people, and then centered parents and caregivers of disabled people. And we are just getting to the beginning of the part in our legacy and our story where we view disabled people as the authority on how we educate disabled children.

And so I think collectively, we don't think disabled people hold the capability to be able, “We can't ask them. They're disabled. We'll ask their parents or we'll ask their doctor. We'll ask that,” you know what I mean? Disabled people do have the capability and are the only group with the lived experience, subject matter, expertise, to bring forth what is really needed for disabled children.

And so, if a school district or a school site or a group is trying to work on special education, and they are not intentionally, consistently, purposefully taking leadership. Going and finding disabled adults. And there are so many amazing disabled thought leaders of color who’s often very generously share their work in this country that we can learn from.

We need to be doing that work, but disabled voices have to be leading conversations about special education. And better yet, if we can, you know, offer the mic to disabled students who themselves are receiving special education, because they're gonna be like, at the core, right?

But, but that's, that's what I would, that's what I would ask is that folks are really thinking about, did disabled people help design this special education programming? What do they think about it?

Andrew: Yep. Yeah. That, yeah, that again, like, the, the tie to, to racial justice. I have lots of comfort with the idea that I have no business creating a, you know, Black history curriculum. The voices of Black teachers and educators and parents should be centered in that. And so, obviously, why wouldn't it also be the case that to figure out how to best serve students with disabilities would be done by those with disabilities.

This is, this has been so powerful. There's been so much (hopefully!) hope. I mean, lots of disappointment in the systems that we've created and the work that we still have to do, but I'm also so grateful for the work that you were both doing in, in moving it forward.

I'm wondering just if we could go back, Shubha, you had mentioned what, you know, what a, what a treat your son is. I think it's easy to hear about the challenges that you go through and not tap into the joy of being a parent, which I think you probably also share. I'm wondering if you could just sort of share you know, share some, some fun story, some joyful moment, something that has, has brought you joy from parenting the child that you get to parent.

Shubha Balabaer: Yeah, I mean he, so he is what's called the Gestalt processor. He's, he's minimally speaking, so when he does speak, it's these phrases. And he's really, really into this one phrase right now, which is “Pretty cool, huh?” And he says it all the time. It's whenever he's like pushing a bus around. And so, today I just got a picture from my partner my kid is, like, sitting in this field of, like, buttercup weeds or something, like eating butter cups and then pushing a bus around saying “Pretty cool, huh?!” So that is, yeah, he's great.

Andrew: Oh, that's amazing! And Joyner I know we, you know, we started, you first mentioned the, the the real, like, strength that you, you feel from being a household with autism in it. Wondering if you can kind of, yeah. Give us a, give us a taste of some of the joy that comes from that as well.

Joyner Emrick: Well, I mean, I'm a hot mess. I have, my sensory needs are really big compared with, with both of my kids, actually. But, my seven year old he– sometimes I say he is the most “Virgo-ist” Virgo who ever Virgoed. He is, like, he clearly has a lot of patience for the fact that he's living in a house full of amateurs.

[Andrew laughs]

And so, he's very precise in how he uses materials and interacts with the objects around him. And if I try to, you know, play with him by like, moving his little dolls around, or his blocks. Switching them up and you know, like, interacting with him through those materials, he will just stop. And wait. And look away. And breathe deeply. And wait for me to be done with my shenanigans!

Andrew: “Give me enough patience to deal with this.”

Joyner Emrick: Right! He, he knows, he knows what his job is on this earth. And it is, you know, to to teach us.

This is actually, it gets a little deep because I felt this really my, my whole parenting experience with him. He teaches us so much just through the practice of his self-determination being so unshakable, but so grounded, right?

Like, he will get what he needs and he will wait. It's fine. He'll wait.

Andrew: Mm. That's beautiful. Thank you so much, both of you. This is, I'm so grateful for this conversation. For you taking the time, for you sharing such deeply personal and, and important stories. I feel much richer for having heard them and I'm so grateful for the work that you both do.

And we'll share lots and lots of resources in the show notes. Just deeply grateful to you both for coming on.

Joyner Emrick: Thanks so much for having us. This is great.

Shubha Balabaer: Thank you so much. Yeah.

----------------------------

Andrew: So Val, what'd you think?

Dr. Val: I missed one interview.

[Andrew laughs]

And you all tackle disability justice, capitalism, racism,

Andrew: Yeah.

Dr. Val: School systems! I mean, literally talked about all of the really important things. And, you know, I'm looking at my notes now about where to start and I, I think I wanna start with what I'm taking away as my action. So what do you need right now, friend?

Andrew: Mm, that's a good one. Yes. Um, my body, honestly, right now, my body needs sleep. Uh, it, I have not had nearly enough lately.

Dr. Val: Mm-hmm.

Andrew: And a little more coffee. Um, but, but otherwise, most of my needs feel like they're met right now. How about you?

Dr. Val: Yeah. I, I feel like my needs are met right now and I think in just a few hours, I'm gonna need somebody to cook dinner for me!

Andrew: Yep!

[Laughter]

Dr. Val: But I, I started there because we usually don't start with action items, but they feel so important to normalize. And to start practicing immediately so that does become something that's in our spirit. That we recognize that each body has needs, and that becomes something normal for how we interact with everyone.

Andrew: Yeah. The normalizing and the practicing in, in talking about it. And having the conversations just from the grace that, that Shubha and Joyner had in the conversation with me, I feel so much more competent in having conversations about disability.

And I think that, you know, having the conversations, practicing asking people what they need, normalizing that, as a conversation that we have is, is a really important action step.

Dr. Val: Yeah. And so, if we just (in our homes and all of our interactions) can give people the options of having things that their body might need, in that moment.

Shubha said it's highly likely that they will be disabled at some point in their life. Right? Which is something that if we are fortunate enough to live to old age, there will be some disability involved in all of our lives. Right? And so creating a culture now, starting with our young people in a way that honors their bodies and what they need, really will make it better for each of us.

Andrew: Yeah. I mean, I think even even the idea of disabled as, like, a category, you know, one of the things that Shubha talked about was, like, once you start drawing lines, you start to draw all sorts of lines and you know, like, “Are you disabled or not?” feels like a really kind of black and white distinction that is not actually accurate, right? Like, everybody has needs and some people have more needs than others, and some people's needs are more easily met than others. And some people live in a society that prioritizes their needs, and so meets those well. We're putting artificial boundaries around this idea of ability.

Dr. Val: Yeah, for sure. You know, I, I think I've talked about it before on the show, just my internalized ableism when it comes to my hypertension, right? I want it to be typical. I want it to be more typical.

Andrew: Mm-hmm.

Dr. Val: And I want it to fix myself! Right? And so, when they talk about, like, schools being places where they try to fix students, and make them more typical, because then you'll get more access if you're more typical. And if you don't, there's really no plan for you. There's only exclusion for you. You know, as a educator, um, that broke me.

You know, because caregivers are not asking for too much for their children to be included in an integrated space–

Andrew: Yeah.

Dr. Val: –where their child can thrive and other children can thrive as well. Right?

The, the bowling analogy,

Andrew: Yeah.

Dr. Val: Really says a lot. And it's, and I haven't bowled in a while, but obviously I can picture when I, when I am lucky enough to hit more than two down, it's because I accidentally didn't roll into the gutter and hit one of those outside pins. And that is such a powerful analogy for us as caregivers and adults and, and specifically educators when we think about expanding access, widening that net. Knowing that we can collect all of our young people in a way that they get their needs met. They feel like they belong. They're not dehumanized that, you know!

Another thing that struck me, Joyner discussed how their first experience with dehumanization happened at school.

Andrew: Yeah. Yeah. And, and, and for her kid, right? Like, you know, you know, she says the IEP meeting and they say, “Your kid doesn't engage.” Like, “What do you mean? Like, I engage my kid.”

Dr. Val: Yeah. And, you know, like special education is considered a special area. And it shouldn't be! Like, we should all as educators be required to know everything that we need to know to make sure all of our students feel included. And work in collaboration with people who have additional expertise, right?

So it shouldn't be, “Oh, go to the, the special education class” or “Go to this isolated room.” There's really no reason, honestly, why we can't do this in a more collective fashion as educators.

Andrew: Yeah, I mean, you know, it starts to feel overwhelming when you think about like, how do we create spaces that, that actually serve all kids, and how do we ask more of teachers in this current climate. So, the answer is not to say, “Hey, teachers, you need to do better.”

Um, I mean, teachers can try, but I, I do think there is like a, a systemic thing that, that we as a society need to take ownership of. Because like they pointed out, like, everybody wins if you do that, right? Like, it's better for all kids. It's better for non-disabled kids. It's better for disabled kids. It's better for the most disabled kids. It's better for the, for the least disabled kids.

And here's where, like, the parallels to, to race and class, all come together, right? When, when you can create spaces that are full of diverse bodies, races, genders, socio-economic statuses, and they all feel included, then everybody benefits.

And we just have to, like, as a society, decide that that's something that we value, and then create the systems to do it. Because, people are figuring it out, right?

Like Joyner has figured out how to keep her kids safe and engaged in her home. It's possible. We just have to commit to doing it.

Dr. Val: Yeah. And I, if I can be honest with you, which I know I always can, I wanna make sure I'm keeping the same energy.

Andrew: Mm-hmm.

Dr. Val: Because I am expecting everybody out here to have some type of racial literacy. Period. Point blank. Like, the end. You know? And I, I, I feel like I can't expect that of others without the expectation that I am gonna be even a little bit fluent, you know, around other issues of oppression.

And so I'm holding myself accountable to that. Right? Um, Because I would be like, “What do you mean you don't know anything about race? Where you been?” You know?

Andrew: Right.

Dr. Val: So I'm trying to make sure that I am holding myself accountable to that same energy,

Andrew: I mean, I think, I think that's where the Sins Invalid 10 Principles of Disability Justice feels so powerful as like a, a place to ground ourselves.

Dr. Val: Much of my learning, um, about disability rights and disability justice, um, came much later in adulthood. When I had a chance to read Judy Human's book. Now, Judy Heumann just passed.

Judy had an intersectional movement, organized with the Black Panther Party, um, right?

And so, I am thankful for that introduction and I'm still like you, learning more just about the movement and how I can contribute as a human with needs.

And so the more that we have these conversations around this nuance, I think the better, I think the better will be.

Andrew: Yeah, I mean that, that nuance piece it shows up in all of our conversations, right?

Dr. Val: Mm-hmm.

Andrew: I'm, I'm sure that nobody is still listening who is expecting neat, tidy answers to–

Dr. Val: Are you sure?!

Andrew: –to any of these things! Cause, cuz we just don't ever end up there. But, but I mean, these things are complicated. If there were neat tidy simple solutions, we would've solved a lot of these problems before. But I think about even the kind of medical versus social model of disability, which was also a profound learning for me. It's not one or the other. It's not, you know, social versus medical. That some bits and pieces of, of a disability may be more medical in nature.

Some may be more social in nature. And, some of them may be society disabling someone. Not to say that all disabilities are society disabling somebody, and not to say the opposite either.

Dr. Val: Yeah. You know, I was thinking about Shubha’s choice–

Andrew: Yeah.

Dr. Val: –between the under-resourced Black school where her son could have his identity affirmed, versus the, uh, all White resource school where he could get what he needed for his disability–

Andrew: Yeah.

Dr. Val: –but was gonna be in an all White space. And they were forced to choose between one or the other, because of all of the lines and borders and things that were drawn by, by their school district.

Um, and you know, I, I regularly get a headache on this show.

[Val and Andrew laugh]

Andrew: White supremacy headache acting up again!

Dr. Val: Oh my gosh, yes! This white supremacy headache, for sure. Because, you know, as a, as a Black mom, again, knowing that in one more way, you know, Black children are being underserved, um, is just maddening. And, and I appreciate the, the passion and the frustration and the anger and the, that our guests displayed on the show.

Like, we should all be mad about this.

Andrew: Yeah. I mean, that, that part was heartbreaking, for sure.

Dr. Val: The idea of tradeoffs, right? Because Joyner also talks about a trade off. Joyner is like, “My wife had to–

Andrew: Quit a job.

Dr. Val: –quit a job. So now it's resources for my child, or financial stability.

Andrew: Or owning a house someday.

Dr. Val: Or owning a house someday.”

Andrew: Right.

Dr. Val: What are, what are we doing to people?

Andrew: Yeah. Yeah. I mean, it's, it's maddening and I think we all have to be committed to doing better. And I think we all have to be committed to doing better not, not just sort of on behalf of, but to go back to, you know, that, that last principle of disability justice, like, it's for our own sake, right?

Collective liberation is what we're after, and, and no one is free until everyone is free. And that includes disabled people.

So we started with, with an action step. But Shubha and Joyner each had an action step. And Shubha was this normalizing asking, “What does your body need right now?” And joiners was this question of are disabled people designing your special education curriculum.

Dr. Val: That's right. And so as caregivers, asking the simple question, you know, who is designing your special education curriculum? They're two takeaways. I'm take, I'm taking 'em away! Okay?

Andrew: Yep!

Dr. Val: There are two takeaways, I am taking away and applying immediately. And I'm excited about feeling some agency around this issue in a way that I, you know, just unsure how to enter.

Yeah.

Andrew: My other action step for, for, I mean, it's an action step for every episode. Because, not to like toot our own horns or anything, but like our show notes are, are pretty awesome.

Dr. Val: So good!

Andrew: And this episode in particular, there's so much. I mean, I think one of the things that I was also struck by in, in the conversation both was, you know, how much I still have to learn, but also how fortunate we are in this moment to have so many incredible activists who are sharing their thoughts on social media, on websites, on blogs. There's so much great, great material out there to deepen our own understandings, and there's a bunch of links to those in the show notes. Both Joyner and Shubha shared links, and we've got some more in there. So, definitely other action stuff today is check out the show notes.

Dr. Val: Yep. So when you listen and you share, make sure you share the show notes as well. Take this conversation. Again, you can make an actionable right away. Like we said, it's, it's great to read books to let your children know that disabled people exist, and how do we normalize having these conversations and making sure that everybody and every body get what they need?

Andrew: Absolutely.

And if you appreciate those show notes and appreciate the podcast, the conversations that we share here every other week, we would be grateful for your support. Come on over to patreon.com/integrated schools. Help us continue to make this podcast. We would be very grateful.

Dr. Val: I'm so sad I missed this one, friend.

Andrew: I know. Don't, don’t–

Dr. Val: I can listen again.

Andrew: –don’t let it happen again.

Dr. Val: I can listen again.

Andrew: I missed you in the conversation, but I'm glad you got to hear it. I'm glad we got to talk about it.

Dr. Val: That's right.

Andrew: Because as always, it is a deep pleasure, an honor, to be in this with you as I try to know better and do better.

Dr. Val: Until next time.