Diana Pastora Carson:
Hi there. Thank you so much for joining me today. Before we get started with our amazing guest, I wanna tell you about a brand new disability awareness educators guide that I am so excited to announce. It's published through National Professional Resources Inc. And it's a trifold laminated Beyond Disability Awareness: An Educators Guide that really takes everything that you will find in my books and on the podcast, and just gives you...It's kind of like Cliff's Notes of disability awareness in a way that's respectful and founded in research and a social justice lens. So if you're interested in checking it out, you can go to DianaPastoraCarson.com/store, and you'll find a link there. Now, let's get started.
Diana Pastora Carson:
Welcome to the Beyond Awareness: Disability Awareness That Matters podcast. Here you will find a safe space to learn and grow with leaders in education, disability studies, disability advocacy, and diversity, equity and inclusion conversations. Specifically, we look at how disability fits into diversity, equity, and inclusion, and how to frame disability awareness in the context of educating K through 12 communities. This podcast serves educators, parents and community members who strive to learn and or teach about disability in a research-based and respectful way, moving beyond simple awareness and diving into inclusive and socially responsive conversations. Thank you for joining us today. Now let's go beyond awareness.
New Speaker:
Hello everyone, and welcome back to Beyond Awareness Disability Awareness That Matters. Today, I'm excited to welcome Shubha Bala, the author of Keira Gets a Talker, as well as the creator of Shubhazine, which is full of resources. I just love it, all of the listings that they have on there are exactly what I wanna have in my home and in my classroom. So, beautiful job. Also, Shubha, you are a parent who is passionately learning through this journey of parenthood. So Shubha, welcome to the Beyond Awareness Podcast, and thank you so much for being here.
Shubha Bala:
Thank you. I'm excited to be here.
Diana Pastora Carson:
Can you please share with us a little bit about your journey and your work and how your world has shifted after having a child who experiences disability?
Shubha Bala:
Yeah, I think a little bit of my whole life has led to this. So a lot of my day job is around social justice work, racial justice work, and I work for a movement organization, so I work for an organization called Media Justice. Amazing organization. And we work at the intersection of how technology surveillance impacts Black and Brown communities in the country. And a lot of different work that I've done, unpaid and paid, has been in the social justice sort of realm. Totally by coincidence, and actually before my son was diagnosed as autistic, I got this job at Media Justice. And one of the things that was on my plate to own is the disability justice component of our work and making sure the organization already really centers disability justice, but there's always more work to do, right?
Shubha Bala:
Like, I think there's a lifetime work worth of work to do. So part of my job has actually been at work to continue the learning in the organization that we all have, both for internally, how we treat each other, but also, you know, when you're showing up and trying to create a future where you're all free, it's really important to center disability justice. So, you know, the pandemic hit, I think, I think this is relevant to my son. So pandemic hit still did not know that I had an autistic kid. Um, and something at the beginning of the pandemic just, I see these, I can read my old journals, and I really felt like there is this wisdom, you know, I saw a new Disability Justice, sort of like, have read a few things, read some Sins Invalid stuff. But I really felt like, okay, the wisdom that disabled people hold that is what I need to seek right now.
Shubha Bala:
Like, that seems really critical to how I'm existing in this pandemic. Um, so I already like, I sort of put together all these resources. I was like, here's my book list. It was early pandemic, so I was like, great, I have so much time. I had a kid that wasn't even walking yet, you know, it was like that great time where your kid just sits there and like, you can read and do whatever you need to do. Um, so I was already like getting into that. And then our son, when he was 18 months old, was diagnosed as autistic. And I didn't know anything about that. Like I, I just knew the stereotypes. But maybe because of the work that I had done, like my partner and I, we within two days we were like, okay, we don't know anything about autism.
Shubha Bala:
We better look it up. And I remember like within one day we already read that Autism Speaks was like a hate group. We were like, okay, not, not gonna listen to them. Um, and then found like a lot of autistic voices. So I think that really, really helped us in, you know, setting the path. And then I think how my world has shifted is, what I can say is that maybe on an intellectual level, I understood a little bit about disability justice. You know, I sort of intellectually got like, this is what I should be thinking or reading or doing. And although it is not me, who's disabled, I'm the caregiver to someone who's disabled, I feel the ableism now, even in my body. Like, I don't, obviously, I don't feel it the way that I would if I was disabled, but having gone through the systems that we have had to navigate in just a year and a half, it's gone from something intellectual to something like really, like in my body that I can feel just how he is treated already. And he is only three years old.
Diana Pastora Carson:
Mmm. I feel that too. I know exactly what you're talking about, Shubha.
Shubha Bala:
I feel it in my body now. Maybe that's why you're asking too. Like, I feel the way that, um, the way that it upsets me, not just intellectually to see how people treat him, you know? And I think like that's the only thing that's been hard. Like, I wanna make really clear, and I'm not saying, you know, every person's different, every caregiver's different, every experience is different. And I do not wanna minimize anyone else's experience. But I think for us, something that I, I want people to know is like, nothing has been hard except for the systems. Like, other than that he's like, if this was like a video, not an audio podcast, and you saw him, you would love him. And maybe I'll send you a video cuz you will love him. Mm-hmm. . But he, so yeah. So I think that is what's been, um, that's what's been hard. But it's been, you know, it's not, it's a new experience to me, but it's not a new experience to all of the people that have this wisdom. So I think it's just really helped me to connect a lot of what I was reading or hearing and like actually connect it to the day-to-day lived experience that my son is going to go through, you know, and that we're going through sort of as a proxy to him right now. Yeah.
Diana Pastora Carson:
You know, I just, there's a lot of listeners who are parents and some who are educators. And you know, I really got what you're saying with Joaquin, with my brother, you know, there are some difficult times. There is a lot of times. And, you know, after 53 years, I can reflect as a child the difficult times that my parents had. And when he was a teenager, it was difficult for everybody involved, and of course him, you know,as an individual. But I have to point out, yes, like you said, you don't wanna minimize different people's experiences. And I know that some people have some really traumatic experiences with their loved one that they love and they wanna protect, right? They wanna help, they wanna support. And yet what makes the whole experience so much more traumatic is that you're alone sometimes, or that you feel judged in the world, or that you're secluded, isolated within the school system.
Diana Pastora Carson:
Mm-hmm. There is this constant need to advocate and a constant need to fight and constantly being rejected, and those are the things that are like sucker punches, right? So not only are you trying to support the medical and mental health needs of your loved one, um, and the behavior support needs and the communication support needs of your loved one, but you're also dealing with, battling with sometimes, these societal barriers that can make it so much more difficult. So I just wanted to say that. And you know, I'm just so glad that, that your experience with your child has been wonderful in that from that you're able to see, wow, people already have this preexisting assumption about him and they treat him a certain way based on that.
Shubha Bala:
Yeah. Yeah. And he's like, and yeah, the reason I also don't wanna minimize it is he's only three, but like every parent, no parent is like, maybe a couple of parents are like my three-year-old's so easy, but , that's not typically what we think of when we think of raising a toddler, you know? Right. So yeah, I'm sure there's gonna be a future where there's gonna be different challenges for us that I think will be much harder than other parents. But at this point, all of my friends with three year olds, it's different challenges, but it's not easy for anybody . Right. So it feels, it feels, you're right, extra hard when I've got, you know, and I'm sure we'll get to this later or I can now, but our whole experience with the school system has been traumatic for us and for him. And I can share more about that story. It was short-lived because it was just so horrible that we've been like, how do we never do have to deal with this again?
Diana Pastora Carson:
Tell us about that Shubha. Tell us about that.
Shubha Bala:
Yeah, yeah. Let me tell you about, let me tell you about my trauma. Okay. And I think to your point of being alone, I don't think most people know that this is what happens. Cuz I didn't know. So, you know, we were in early intervention with him and then in New York City, I don't know how much of this is true for other places. When you turn three, that's when you get moved into the Department of Education here and out of early intervention. So early intervention's supposed to be about supporting the family and the kid. And then once you went to the Department of Ed, uh, it becomes, in my opinion, a capitalist machine now that is just trying to move through and produce good workers. And, um, so, you know, we did these evAuluations. So we, you know, it was sort of the end of the pandemic.
Shubha Bala:
So we were able to do in-person evAuluations. And first of all, those were horrible. Um, my son is, I guess would be considered a sort of kid with high support needs, but this is on the tail end of the pandemic. So he had never been in another building other than our home for, since he was six months old, he had never been around other people. And on three days we had to go in person to this school building, big school building, had to force him to go inside the building, um, to interact with evAuluators. He wouldn't let them, he just cried and cried and cried. I wasn't there cuz they would only let my partner be there. And, um, my son was apparently just really distraught, wanted to leave. It was probably the first and only time in our lives where my partner had to say no.
Shubha Bala:
Like, even though I see that you are completely dysregulated right now, I'm gonna ignore your needs. Like, I'm gonna ignore what is not a tantrum. It is a complete like dysregulation of your body. I'm gonna force you to stay in this building. Um, the evAuluator, thankfully, um, none of the evAuluators forced themselves to stay in the room with my son. So they, so what seems comical is that my son and my partner are in a room with a door shut. My son is crying and crying and crying and crying. The evAuluator is outside of the door asking questions to my partner. That could have been done on Zoom. Like there was no reason for this to happen. And we had to go back three days in a row. And to this day, we don't know if this was the cause, but after the evAuluations, my son spent about a month or two months where everywhere when we went outside, like if we were going to the park, which my son used to love, like he would love going to the park, my son would stay in the stroller.
Shubha Bala:
And it was like probably four to eight weeks of just him staying in the stroller when we pushed him around in the park. And I think that it was because of the trauma of, of these evAuluations. And they don't care. Like nobody has asked us about that. Like at no point did the evAuluators sort of say hey, I don't think this is working for your son. Like maybe we should figure out a less traumatic way to do this. And then they go through, you know, they do the evAuluation, he scores very low on all the neurotypical things. And um, then our next problem is that the Department of Education, so again, in New York City, we're supposed to work as a unit apparently. I don't know, that is not what happened to us. They just had the evAuluation form, you know, they had whatever his, I don't even wanna say what they were like, but they were like, this is his equivalent age in months .
Shubha Bala:
And, um, and so then they just recommended to us the most segregated class. And that was basically it. Um, there was no discussion. We, we were very clear. We don't want that for a variety of reasons, um, including that in New York City, the school that would've been closest to us would've been about a 90 minute bus ride each way. My son is three, my partner is not working full-time. So, so we don't have to. They said there's no part-time option for him. If he was in a less restricted class, he could have gone part-time. But based on what they were recommending to him, he had to go full-time. You know, that's an hour and a half on the bus every day. No, sorry, three hours on the bus every day. , um, after the pandemic. Like, and we don't, we also don't believe in segregation. But I think we didn't know, we didn't know, we didn't believe in segregation.
Shubha Bala:
This was our first time experiencing this because we had no idea what was happening.
Diana Pastora Carson:
You didn't know it existed still!
Shubha Bala:
We didn't know it existed still, but it felt like we were just on this phone call with this woman who was looking at a piece of paper about our son and insisting that she knew that what he needed was to be in this school. And, and first of all, no one needs segregation, I now know that. But on top of it, all of his therapists wrote letters saying that that is not what he needs. Like we were saying it, like, so then we had to go through mediation, we had to get a lawyer, we had to fight. Um, and he was two and a half when all of this was happening and we were like, wow, he's not even, he's not even three yet.
Shubha Bala:
And this is what we have to go through. And, and on a side, to add insult to injury, just cuz I know we're gonna talk about Keira Gets a Talker too. Our person would not put his digital AAC in his IEP. He had been using it for a year and she was like, well he didn't get a formal evAuluation, so I think that he should use picture cards. And we were like,
Diana Pastora Carson:
Oh my goodness.
Shubha Bala:
He'd literally been using it for a full year. His, our speech therapist livid. She was just like, what? Like that is like saying, I know your kid's been in a wheelchair for a year, but since we didn't approve the wheelchair, we're just gonna have your kid sit motionless on the ground for the year that it takes for us to, to evAuluate whether or not they need a wheelchair. Like we were like, this is so ridiculous. We had to fight that as well. Um, yeah, there was a lot of fighting that happened and it was very, it was like very traumatizing for him and we were just like, how do we never have him do an evAuluation ever again?
Diana Pastora Carson:
I'm, I'm so sorry that that happened. Yeah. We still have so far to go.
Shubha Bala:
Yeah.
Diana Pastora Carson:
So you mentioned Keira Gets a Talker. What is Keira Gets a Talker for those who don't know and why did you create it?
Shubha Bala:
Yeah, so Keira Gets a Talker was, is just this like tiny PDF book that I made and then was like, let me share this with some people on the internet. And then it ends up people really, really liked it. So, and in retrospect, if I had known that it was gonna be so big, I probably would've named it something different. But so my son uses the digital AAC device, um, that we call a talker. We started him on it before he was even two years old. So we started him on it really, really young. Um, he still uses it in what I would call atypical ways. He uses it in very autistic ways, but not ways that maybe a neurotypical person would think you're supposed to use it . Um, he is also a gestalt processor. Should I define what that is?
Shubha Bala:
Yes, please. Yes. Okay. Um, so a gestalt processor is just like a different way of learning language that it's felt that most autistic people and some non-autistic people are. And a gestalt processor, instead of learning like individual words and then being like, oh, this is what a dog is. Now I'm gonna combine it with dog eat, you know, cuz this is what eat is. A gestalt processor is first gonna learn phrases in a context, and then over time we'll like learn to break up those phrases. So dog eats might mean something totally different than, um, what a typical or an analytical processor might think dog eats. So a lot of gestalt processors just like learn, develop language the same way as anybody does, and they don't need speech therapy and it's not a bad thing and it's not broken. So the reason this is important is because the way a Gestalt processor uses a talker might look really different.
Shubha Bala:
It might look like phrases, um, um, songs, you know, things like that. And the way a gestalt processor communicates, even if they use their mouth, um, would also sound very different. So when I wrote Keira Gets a Talker, the reason I did was because there was another family, um, very amazing family that blogged about their kids' AAC journey, the Neider family. And there's a lot of us out there that found their blog, and then basically used that blog to teach our kids' AAC and where, our family was one of those, although, although we then realized that that family's kid was not a Gestalt processor. So the way they wrote a Curious George Gets a Talker PDF that is available online, anyone can find that too. Really great that they wrote that. And you know, it uses Curious George Images. Um, I think they got like sued by Curious George or something, but anyway, but , it's still out there.
Shubha Bala:
Um, but we, I had two concerns for giving it to my son's preschool. One was that our son is a Gestalt processor and a multimodal communicator. So I felt like with the Curious George Gets a Talker book, it was really focused on here's someone that cannot communicate and then they get a talker and then they can communicate. In our son's case, he communicates really, really well, just not using mouth words, but he communicates really well through gestures, through facial expression, like in all sorts of ways. Um, so, and using his talker, he communicates again in ways that like might be sort of atypical. So I wanted a book that better reflected, not like you couldn't communicate and then you can, but more like there's like a lot of ways that he's communicating and then also he like gets a talker. Um, so that was number one.
Shubha Bala:
And then two, this is very specific to us, but there was a racial element. So with, um, a lot of your listeners, if your listeners are Black or otherwise, we'll know that like there's a big racial com element of comparing Black people to monkeys. Our son is Black and so there's like a racist history behind that. And on top of it for a lot of reasons, our son is now in a mostly white school, so my partner and I are not Black. And we were like, we don't want to send this book to his school that centers a monkey using a talker . Which, you know, I think we're being like maybe a little too sensitive, but still, we were like, that could be, that could be, you know, just to invite a lot of like, not purposeful racist thinking, but just to like absorb if you're a child that, oh, here's this monkey using a talker. Here's the Black kid in my class using a talker. Okay. That just felt wrong to us. So I don't know. So I was like, yeah, let me just make a book for his preschool that was, and then the audience is his preschool that features a Black child who's a gestalt processor, multimodal communicator. And then I'll share it for free so other preschools, um, can use it as well. And I've made an editable version as well so people could edit it if they want to as well.
Diana Pastora Carson:
Wow, that is such a great contribution to educators and families. Thank you so much for taking the time to do that. I ordered my hard copies. I have two of them personally and I have the downloadable as well and I've shared it with all of my listserv and I'll probably do it again repeatedly just because I think it's so, so important. Now your son has what kind of a talker? What does he use?
Shubha Bala:
He has an iPad and then the app on it is called Speak for Yourself.
Diana Pastora Carson:
Okay. Great. Thank you. Thank you. Yeah. Oh wow, that's wonderful. Thank you again for bringing that about. Now tell us a little bit about Shubhazine.
Shubha Bala:
Um, yeah, so I l it's really just a one-time zine that I made and I like that you're calling it Shubhazine. I don't know, it's just a zine. Uh, I think I called it "That Was Fun, But Now We're Done" because that is one of my son's first gestalts on his talker that he loves to say. He says it all the time on his talker.
Diana Pastora Carson:
What does he say?
Shubha Bala:
That was fun, but now we're done. Okay, it's from a Daniel Tiger song. It goes, "that was fun, but now we're done."
Diana Pastora Carson:
Okay. .
Shubha Bala:
And it was probably the first time we realized the power of music. I'm trying to think if we even had a speech therapist at this point, but my son, you know, we would watch the computer and then we would stop and then he'd get upset, like every kid does. And then one day we were like, what if we sing, "That was fun, but now we're done." And so we did and literally we sang it and he just shut the laptop himself and he went and put it in a drawer and we were like, wow, what is this magic of gestalt processing? We didn't know about gestalt processing at that point, but now we realize that was the, the reason. Um, but that was the, that's what I decided to call the zine, sort of as a tongue in cheek thing. And so, which will make sense in a second.
Shubha Bala:
It's a really, really long zine. And the reason I made it was cuz I was so full of rage from the systems that I described to you the experience I described to you, but a lot more experiences than just that. So full of rage at how, at how much he was not being seen as a human, as like a kid, a little kid, like as a one year old or a two year old that needs the exact same thing that every other one and two year old needs, which is like love, joy. And, and I was like, I need to channel my rage somewhere and I need people to know what we're going through. And so I wrote the zine and literally I was like, if no one reads this other than my parents, that's even, that's great cuz I, I just, as long as my parents know what we're going through, like that's what I want.
Shubha Bala:
But it ended up being, you know, a lot of small articles. It's a bunch of small articles, some of it talk about our experiences, some of it talk about the joy that we have. Um, you know, some of it is like what you and I were saying earlier, which is like, he's three and so, or he was two at the time that I wrote it. We have a lot of joy and we have a lot of challenges just like every parent parenting a two year old and ours are slightly different. So I write about some of that. I write about some of the AAC device as well and the history of that. Um, and then I write about what disability justice means to me, um, and sort of maybe a plea for other parents of, uh, I think I give like one really specific advice on like if you are a parent to a kid, um, and it's probably a different podcast episode, but like I was like, if you're a parent to a kid, disability justice is not like just reading them books about how there are disabled people.
Shubha Bala:
Um, and I, and the suggestion that I have is for families to just practice normalizing talking about needs in your house and to do it like every morning or every dinner. And like that to me is what it means to infuse disability justice into your household. It's normalizing that every single one of you actually have bodies. Um, yeah, I mean yes, like teach people about disabled people, et cetera, but like that's teaching someone that disabled people exist. That's not dis disability justice. Teaching your kids that we all have needs, that, that sort of is my advice. So, but I talk a lot about that and I talk about where I learned about that, um, where I've seen it be really powerful and, you know, and, and I think obviously I think the reason I connected with you so much is because you fight for inclusion.
Shubha Bala:
And I think that's a thing that is missing in our current segregation education system because we have segregation, nobody, including the kids that are in the general education class, um, get, get that opportunity to learn that they're a person with needs, right? Mm-hmm. instead, you're not a person with needs. You either, either person that goes into a gen ed class, which means you don't have needs, you have to fit in here, or you're a person that goes to a segregated class, in which case you have needs as defined by some checklist that the DOE has decided on. So, um, but anyway, so those are some of the things I like share in my zine and I'm still really, really proud of it. And, um, I wish it got more views than Keira Gets a Talker, honestly. like I, like, I feel like it's more powerful than Keira Gets a Talker, but it's not for preschoolers.
Diana Pastora Carson:
So no, it's not for preschoolers, but it's certainly, it's, it's a nice template of resources for somebody who wants to start understanding what disability justice is. You know, so often, and even myself included, you know, I thought it was just like another, it was part of the evolution of the disability rights movement and really it's distinct. It's, it's a distinct conversation. Um, and of course disability rights are so important, and disability justice is another movement, um mm-hmm that, that I think educators and families need to strive to understand. And you did a really nice job of putting together lots of resources that can help us to start understanding. So again, a great contribution to this community and I hope that my listeners will check it out. Where can they find the shubhazine? I call it shubhazine because it says shubhazine on it, by the way!
Shubha Bala:
I know it does say it does say that. Yeah. So it's https://linktr.ee/shubhazine, but the specific actual zine, which is like a 56 page pdf, um, is like the fourth link down. It says, I need to organize this better, but it says "I also made a zine." And so if you click on that, you can download the PDF, um, and if you prefer a snail mail version, there is a forum where I say, gimme your address and I am happy to just mail it to you.
Diana Pastora Carson:
Wow.
Shubha Bala:
Cause I like some snail mail.
Diana Pastora Carson:
Yes. It's the fifth link down. Yes. And it has a lot of great stuff in it.
Shubha Bala:
Yeah.
Diana Pastora Carson:
Awesome. I'll put the link in the show notes as well.
Shubha Bala:
Okay, perfect.
Diana Pastora Carson:
Okay, so you talked about, you know, the barriers that you've had with Aulu. And now do you have any examples of moments of actual inclusion or of access intimacy?
Shubha Bala:
Yes. Um, so in all of my rage there have, I have learned the most like beautiful things. I've had the most beautiful experiences and, um, I feel like it's so important to share them. So first I wanna share, um, last summer, sometime last year, someone contacted me through the interwebs in some mysterious, faded way, how people come together. Um, their name is Sam and they co-run a group called All neurotypes.com, I think, but All Neurotypes is the name of the org. Um, and I, I think you would love, uh, Sam by the way. Um, but so Sam contacted me for some mysterious reason that, I don't know, I think, I think they thought something different of me. Anyway, it was a very, very amazing connection. We still stay in contact, but one of the things that they do is they run a, uh, summer camp called the All Neurotypes summer camp.
Shubha Bala:
Um, and Sam is autistic, Sam's son is also autistic and higher support needs, um, similar to Aulu a little bit older. Uh, and then it's co-run with an autistic OT and a speech therapist. And so, okay, so they we're running this summer camp and it's in Durham cuz that's where they live. I live in New York City, but by total coincidence, we were going to Durham even though I've never been there before, uh, for the month, for the week. We were going for a month and for the time that the summer camp was on. Um, and I don't know that I was spiritual by the way before the past year and a half, but I like really believe in the universe now. And I'll share in my next story too, like just the way fate has come together. So never been to Durham before, happened to go there at the same time as the All Neurotypes summer camp.
Shubha Bala:
And so we decided to go for one day because we didn't wanna spend our whole vacation there, but we decided to go for one day. And I, it, it was like inclusion in a way that I have never seen before. But what it actually was, was a disability-centered camp run by disabled people. Um, and the, for the week before the camp, they have volunteers and we had to attend the volunteer training as well because we were gonna accompany our sons since he was very young. And so everyone had to attend these, the training and the, it was like a week long intensive trainings. They were so amazing. They covered everything from gestalt processing to meltdowns to autistic play to, yeah, just these really amazing things. Okay. So we're like, this is incredible. I actually sent some of the recordings to my parents too cuz I was like you have to watch these.
Shubha Bala:
Like, it just explained everything so clearly and in a non-judgmental way, like in a very open way. Um, and so then we go to this camp and this, this is what I have never seen anywhere since. Here's what was amazing. We go to the camp, we walk in and no kid is playing with each other and there is no pressure, there is no judgment. Like it was just like, yeah, you don't have to play with each other. That's fine. If you wanna play with adults, that's fine. If you wanna play alone, that's fine. And I feel like so far in my experience, even places that are very neurodivergent-affirming or they claim to be, social skills is like the one thing that is still like, you know, we're gonna be affirming, but you better learn to play with each other. And this camp was like, we get it.
Shubha Bala:
Like we get it. Other people can suck or whatever. I mean, I don't know, I don't know what was going through the minds of people that didn't wanna play with other people, but whatever it is, you know, like you don't have to be friends with everybody. Yeah. Um, and yeah, and then like, so that was like, to me that was the most mind-blowing thing. But also like Sam created a book of disability rights and disability justice heroes. So multiple races, genders, ages, and so it was laminated. And, that to me, you know, as like a little bit of an aside, here is my rant on the difference between segregation and like, identity based spaces. So our son is Black. Before we knew he was autistic, we sent him to an Afrocentric school. And the difference to me between an Afrocentric school, which is not a place of segregation, it is a place run by Black people who have identified a need to bring up the self-esteem and like self-awareness of Black people, that is different than a, than a segregated school that my son is being forced into that is not run by disabled people.
Shubha Bala:
And the goal of it is to try to make my son meet as many neurotypical check boxes as possible to eventually get him into a gen-ed classroom, right? Like that's the goal of those. But in the Afrocentric school, and this is what the summer camp reminded me of, um, you know, the curriculum for this two-year-old, his two-year-old preschool class was like, learn about Marcus Garvey, you know, learn about two Black musicians. Like these were the month-to-month curriculum. Um, and so I, when I went to this, this camp, I was like, this is literally in my zine. One of the things I write about is that a true like disabled centered school would be celebrating, uh, disabled activists and disabled heroes. And it would be bringing in disabled musicians just like the Afrocentric school was bringing in, you know, Black drummers and Black dancers. So in this case, like yeah, bring in, um, you know, like, some of the folks that you've interviewed on your podcast, so Keith Jones, Leroy Moore, bring in people that are like disabled to be like, yeah, it's amazing that we're all here and we're all disabled and we have art and we have culture and we have all of these things. So that summer camp was a really, really moving experience. And I think it set the bar so high for me that it is very hard now for people.
Diana Pastora Carson:
Uh-oh! .
Shubha Bala:
But you know, like quickly too, the thing that I, I do wanna share cuz there might be other parents here through a hell of a lot of work and really good luck, we found an incredible, um, private, unfortunately, but private preschool to send our son to. So, you know, going back the DOE was saying he has to be in a segregated school. We called and toured probably 10 different preschools. We live in Brooklyn, so it's not like the weird, you know, Manhattan preschools where you have to apply or I don't know, it's not like the stuff on TV where you're like, it's so hard to get into these preschools. They're all just like, if you can pay, you can come to this preschool. Um, but we interviewed a bunch of them and the, and the responses ranged from like, when we didn't sugarcoat, you know, that my son has high support needs, we were very honest about that.
Shubha Bala:
We were honest about what that means. Um, and even the schools that like so-called specialized in like autistic kids or they specialized in kids with IEPs, they were like, well, we'll have to see. Like, I don't know, I don't know if he can come here, but we'll see. Um, and then we also had a lot of folks who were positive, but um, they would say, we didn't realize this was bad until we spoke to the current preschool, but we would explain, you know, our son's autistic, here's some of his needs. And they would say, oh yeah, for our autistic kids we do blah, blah, blah, blah. Right? So they had an answer to like how they treat autistic kids. And sure, that sounded great. What was amazing about the preschool that he's now in and so telling about their inclusion mindset is that when we toured with them, they were basically like, well, we can't tell you what we would do under blank circumstance cause we've never met your son before.
Shubha Bala:
And literally for every question, it was almost a joke. Like, we would be like, you know, okay, he runs when we're in the park or something, like, he might run away. How would you handle that? And their answer would be like, well, it depends on your son. And then we were like, whoa, this is mind-blowing. You're saying that you would treat our son like a individual person and not like a diagnosis? No one that we spoke to had done that before. And so it, it was just mind-blowing and it was mind-blowing how much we had been conditioned to believe that in the school environment, what's first and foremost is his diagnosis. Mm-hmm. . And they were like, they were like, you know, okay, we wanna, you know, we wanna look out for his health and safety. They've never had a high support needs student in, I mean, they're a pretty new preschool, but they hadn't had a high support needs student.
Shubha Bala:
My partner, we were like, we don't see how our kid's gonna go to school if my partner doesn't go with him. And they were like, that's cool, you're fine. Like your partner can come. We were like, we don't think our kid can go at 9:00 AM because the, the influx of people is very overwhelming for our kid. And they were like, great, we'll we'll have him start at 10:00 AM and we'll have him leave an hour before everybody else. No problem. Um, we were like, okay, he doesn't wanna go in the classroom. He, he literally just spends the entire day on the grassy hill with the slide or you know, whatever. They have a grassy hill. He really loves it. Um, he likes drums. They were like, great. Bring, bring a set of drums in. That sounds perfect. Um, they printed out, we did a training on AAC for the school and gestalt processing, um, this school a they were so excited that they were like, from now on we're gonna look for gestalt processing for all of our kids,
Shubha Bala:
So that we can tell the parents. But they also put printouts of his AAC all over the classroom and they read, Keira Gets a Talker and now that's the kid's favorite book. All of the, sorry, the other kids. Mm-hmm. and the other kids apparently use the printouts of the AAC throughout the day. They just like run over to the AAC and use, use it. Um, it, it has been incredible! Our speech therapist, sorry, this is my last, there are like a billion examples of how this school has practiced inclusion even though they've never done it before. They're not a so-called inclusion school. They're just a school that was like, we don't discriminate. Like they were big on like, we don't discriminate through race, gender, et cetera. And they were like, yeah, I guess we're not gonna discriminate based on disability either, then like, we're gonna make sure we can figure this out.
Shubha Bala:
They're learning at the same time as we are. And so even, um, you know, uh, we, so, so a challenge is that he doesn't wanna go in the classroom and like, you know, we were sort of like, what do we do? And then our speech therapist was like, oh, well if he's playing on his own, why don't you take some of that time to, um, sit with the other kids and teach them how to communicate with Aulu? And we were like, cool, that's a great idea. So we now have this like team that a year and a half ago I was hating the entire system, but we now have a team that is looking at not, how does Aulu, yes, how does Aulu communicate with the other kids and how do the other kids learn how to communicate with Aulu and use the AAC device?
Shubha Bala:
Um, and now I'm talking to the school about like, like maybe, uh, are they interested in actually becoming an inclusive school? It they would only, they would be only the second inclusive school in all of New York City.
New Speaker:
Oh my gosh.
Shubha Bala:
Yeah. Oh, there's many that pretend to be inclusive, but they're not. But there's only one other private school in all of New York City and there's no public, there can't be a public school that's inclusive in New York City cuz of the system. But there's one private school that is, so I've been saying to them like, you meet all of the, you meet all the preconditions, right? Like you're saying Yes/And, you're open to learning, you're child-led. Like you believe in individuality of all kids, the ones with diagnoses and the ones that don't. So like, are you willing to really move forward and just become inclusive? So we're working. So I just talked to them about that like two weeks ago. Oh, that's, and we're gonna work on that. Yeah.
Diana Pastora Carson:
That's beautiful. So Shuba, I can hear already, I can hear in the minds of my educator colleagues saying, wait, he, so Aulu is just sitting outside by the slide in a patch of grass . Like, like how, when am I supposed to teach him? What, how am I going to teach this child? How is he gonna learn? Given I know granted he's three years old, he's
Shubha Bala:
Three ,
Diana Pastora Carson:
But like, I have to teach him the, you know, I need to teach him about sounds and letters and I need to teach him about numbers. And like, so how do you justify that to somebody who's stressing out as an educator going I don't know what to do? I don't know what to do with this child. I feel like I'm not doing my job.
Shubha Bala:
Yeah.
Diana Pastora Carson:
What do you want, what do you want educators to know and what do you want parents to know?
Shubha Bala:
Yeah, I mean maybe, maybe first that he's three is really, really relevant here. Maybe I want parents to know that too. Yeah. Like he's three and we've already decided that if the moment he decides he doesn't want to go to the school anymore, we're not gonna go. That's fine. He's three . So like, I think there is a big part about this that is like, you know, it, um, he doesn't need to learn all of these things right now because he's on his timeline and he's learning, you know, things in different ways, right? Like, how many kids can use an AAC device at three years old? Very few. He's very far ahead of other kids when it comes to AAC devices, . Um, so I think that is like one thing that I, especially for parents, I'm sure educators know it, but like there is so much pressure when you are a parent of a disabled kid but not a non-disabled kid.
Shubha Bala:
If your kid's disabled, you've gotta get them started when they're two or one or, you know, whatever you do, you can't just like leave them. Um, I do think that there is a big part of inclusion that I have not learned about yet. And so, um, there is something about like, the fact that he's in the building doesn't count. And so we are trying to make sure that we're orienting ourselves towards the principles of inclusion where he's actually included. But I think that's another thing I would say to parents. Like, you can figure this out as you go along. And the fact that I'm me, I've got a teacher, I've got, um, a SEIT. I don't know if a SEIT is a word outside of New York City, but it's a special education instructor that he has for a few hours, and a speech therapist.
Shubha Bala:
Like we're all collectively figuring it out together, which is so exciting and so beautiful because it's not one size fits all. Um, and then lastly, like this part, this part's very practical for educators. I don't know how actually how this would like, um, play out, but they, we are trying to figure out how do we take the curriculum. So this particular school is very child led, so I think they already don't do like tabletop learning or whatever you might like, they're not like sitting there teaching the letters in that way. And so the kids came up with a curriculum for this year. The kids decided construction is what their goal, their thing is this year. So we are already figuring out a few things that Aulu likes. So we know he really likes to look at street signs. Like that's always been true.
Shubha Bala:
It might be that he's hypoxic, so when we're walking down the street, he looks at street signs. So when we heard that the theme is construction for a lot of the other kids, they're maybe focused a bit on building and pretend play. But those are two things Aulu doesn't do. So we're printing out like construction street signs and then like that we're gonna try to use that to help him learn literacy, things like that. So because Aulu isn't playing in a typical way, we have to sort of pick things and figure out new ways to do them. And then we do them out where he is. I say we, it's actually not me. My partner, let me shout out my partner. My partner literally is in school with him all day every day, um, . But so my partner and Aulu's SEIT teacher are figuring out these ways to incorporate like all of the lessons in different ways that accommodate Aulu and give Aulu autonomy, which I think is the most important thing for Aulu. He needs a lot of autonomy, but so does everybody, right? Yeah. But yeah, so I do too.
Diana Pastora Carson:
A sense of agency, a sense of self-determination and control over your life and meaningful connections to the world and to people around you...all that's so critical.
Shubha Bala:
I was gonna say the final note to parents maybe when you said about self-agency. So early on in our early intervention process, my partner and I like sat down and created seven words, which are, which now I don't remember, so I hope you don't ask them. But we were like, we need to create our vision for Aulu because what keeps happening is we meet therapists and therapists are like, what's your three-month goal and what's your one year goal? And we're like, we don't, we have like a 20 year goal. Like we, we know what we'd like for him when he grows up and can we take those vision statements and work backwards into like what does he need in this year? And so when you said that, I was like, oh yeah, one of the words we used, uh, was kujichgulia, which is the Swahili word for self-determination.
Shubha Bala:
Most the other words, we all did English, but for that one, we felt like his race was as relevant as his disability in what self-determination means to him as a Black man or a future Black man. Um, so that's what reminded me of it. But our other ones were joy, ease, and then a bunch of others. And I literally, . We literally took those words and then broke them down into what it means for him for this year. And then we shared that with his OT at the time and his speech therapist. So we were like, look, if we, if he wants to have ease when he's, you know, 20 , then it does seem like what he needs now is to learn, is to have regulation, right? So we weren't just like, let's not do anything because he just needs to have ease when he is 20.
Shubha Bala:
We were like, what actually do we need to do for him to have joy? And we were like, oh, I think one of the things we need to do for him to have joy is we need to learn more what his sensory needs are so we can give him those inputs that really give him joy. You know? So we made it really practical, but, um, but that's what I want. That's what I would wish for parents because this system really makes you think short-term. And we really lose sight of like, of what probably all of us envisioned when we had kids. We weren't like, here's I want my two-year-old to stack blocks. Yay. Can't wait to be a parent. We were like, I can't wait to have these beautiful moments cause they're with our future, you know, child. So yeah.
Diana Pastora Carson:
Oh, Shubha, this is awesome. Thank you so much. I love your 20-year goals, which I know are in alignment with Aulu's own goals. Like who doesn't wanna have ease and joy and self-determination or kujichagulia. So thank you so much. I I hope that our listeners will take that to heart as parents and also as educators. Thank you for being with us today.
Shubha Bala:
Thank you so much.
Diana Pastora Carson:
Thank you for tuning into this episode of Beyond Awareness: Disability Awareness That Matters. If this was helpful to you, be sure to subscribe, rate, and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me, Diana, on Instagram @DianaPastoraCarson and on Facebook at www.Facebook.com/GoBeyondAwareness. Or you can go to my website for more information at www.DianaPastoraCarson.com. My books include Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. They can both be found on Amazon. For your free Beyond Awareness resource called the "5 Keys to Going Beyond Awareness," simply go to www.GoBeyondAwareness.com/keys. This podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of Emmanuel Castro. Thank you again. Be well, be a lifelong learner, and let's be inclusive. See you next time.
