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เนื้อหาจัดทำโดย Erin Croyle เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก Erin Croyle หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal
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Are Inclusive Schools Even Possible? Part 1

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เนื้อหาจัดทำโดย Erin Croyle เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก Erin Croyle หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal

Imagine being treated as a guest in your own school.

For many students, not only is that their reality - it's by design.

In part 1 of this 2 part episode, Erin Croyle and special education teacher Trina Allen break down what needs to be done to create meaningful inclusion in academics, throughout our school communities, and beyond.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Talia A. Lewis' Working Definiciton of Ableism.

How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done.

What is the Affordable Care Act?

National Center for Education Statistics releases various annual reports and as well as topical studies.

More on the Ithaca City School District.

Inclusion benefits EVERYone.

Learn more about the Individuals with Disabilities Education Act (IDEA).

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's partnership for People with Disabilities.

01:00:39:04 - 01:01:08:18

Erin Croyle

This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability can be. But we tackle the tough stuff too. Inclusion could be one of the most complex. As guest Trina Allen points out, students with disabilities are often treated as guests in their own schools. Trina should know.

01:01:08:20 - 01:01:28:22

Erin Croyle

She's a special education teacher who moved all the way across the country with her family to work at one of the few school districts she could find that is striving toward meaningful inclusion. Trina, thank you so much for joining me.

01:01:28:24 - 01:01:38:13

Erin Croyle

Champions for inclusion are real life superheroes, and superheroes typically have some great origin stories. So let's start with yours. How did you get to this place?

01:01:38:16 - 01:01:59:07

Trina Allen

Well, first off, it's an honor to be here. So thank you. And I've always worked with kids. I worked in group homes and transitional living programs, and I did hotline services and things like that. And it was it was what I intended to do. I tended to be a therapist and I went to school and got my bachelor's in psychology and was going to move on.

01:01:59:07 - 01:02:22:07

Trina Allen

And then the art therapy, I wanted to be an art therapist and the art therapy program I was assisting in was shut down. And it was for a group of students that had really intensive trauma and really needed that. Therapy is a heartbreaking thing, but they offered me at the school to work and the program for autistic students.

01:02:22:09 - 01:02:48:19

Trina Allen

And so I, I said, Yeah, sure. And within a month they offered me a teaching position and I was in no way prepared or qualified any fashion for that. And I jumped in right away and eventually got my master's in special education. And, and it was at the most secluded, the most restricted, most segregated placement for students who had been forcibly exited from the general public education.

01:02:48:19 - 01:03:20:16

Trina Allen

And I didn't know that I didn't know anything at the time. I didn't know anything about histories of disability and resistance and pressure for inclusion. And so I left there when I realized I couldn't. I was there for years. It was very painful to see students who could not get what they need and who needed so much. Their support needs were being routinely denied and I did my very best in making this space as loving as it possibly could within the context of extreme deprivation.

01:03:20:18 - 01:03:38:24

Trina Allen

It was terrible. And so I went to the district thinking that it would be better and I loved it, and it was still segregated and I did a lot of things to force that to change. As I understood more and more what my students needed and also listened to people listen to it. Disabled adults who were like, This is what needs to happen.

01:03:39:03 - 01:04:16:08

Trina Allen

And the best that I could do was harm reduction. I had a reverse inclusion program and I thought that by proving it could work and it did, that it would make the systemic inclusion of my students easier. Like, Look, the kids are already in, I already did it. We got it. Let me let's now make it institutionalized as opposed to like just this thing that we tagged ragtag together and there was literally no fat, no willingness, nothing, not even an ideological concern, no disabled people making any of the decisions.

01:04:16:10 - 01:04:40:06

Trina Allen

And I realized, okay, like I'm getting paid to segregate kids and I got to go. And so I we looked across the country and had like five states. We were thinking about an ethical city school district said, hey, inclusion. And then it's actually done for students with high support needs. And I was like, okay, this might be just the website.

01:04:40:08 - 01:05:06:15

Trina Allen

What happens if we move there? It isn't like that. And I have been glad to say that. Well, there's so, so, so much work to be done. It's a possibility. It's a possibility. Whereas everywhere I worked in the past I haven't been and that's where I am now. And I would say that my continued journey is really understanding my own neurodivergent and moving in the ways in which I want the world to look and listening to disabled voices.

01:05:06:15 - 01:05:08:20

Trina Allen

That's sort of where I'm.

01:05:08:22 - 01:05:20:06

Erin Croyle

Trying to tell me more about the search for inclusive school districts. When you were searching, how many were out there that even talked about having inclusive practices?

01:05:20:08 - 01:06:06:22

Trina Allen

Well, like all things that get co-opted sort of by general rhetoric and they become meaningless. And so the word inclusion, the word diversity equity starts out as a rallying cry for changing systemic oppression, and it gets whitewashed into something that's just up towards a system that looks a little bit nicer, if that makes sense. And so it was very hard to be honest when District said inclusion, and what they could have meant was they have a nice bench for kids to sit out together and not think their their curriculum and their program instruction and their general ethos and the way in which they provide space for folks with disabilities to lead to be their own

01:06:06:22 - 01:06:31:07

Trina Allen

heroes. Right. And I think that is almost nothing you can find on the website. So it was really difficult. I did look up several writers that I liked. I looked up several districts that were talking about doing cohort inclusion, and we just hoped, you know, we just really felt there was a lot of this looks like the best.

01:06:31:09 - 01:06:39:20

Trina Allen

And I don't know that it is. I mean, honestly, the district we chose looks like the best that I could find from that sort of research.

01:06:39:22 - 01:07:06:23

Erin Croyle

Meaningful inclusion is rare and doing it well is an investment in both time and resources. It's not something that our flawed system of public education is set up to handle. According to the National Center for Education Statistics, elementary and Secondary, public school revenues across the country total more than $950 billion during the 2020 and 2021 school year, which is the most recent data available.

01:07:07:00 - 01:07:51:18

Erin Croyle

The Federal government contributed 11%, 46% came from state funds and 44% of that 950 billion plus dollars came from local sources, most often property taxes. This set up often pits school districts who are dealing with teacher shortages, aging buildings and students with diverse needs against the communities they serve. And it's frustrating, especially because the Individuals with Disabilities Education Act, also known as ID a OR idea, which was enacted nearly 50 years ago, was supposed to provide funds for students with disabilities to have access to a free and appropriate public education, also known as faith.

01:07:51:20 - 01:08:10:04

Erin Croyle

But it has yet to be fully funded. I can't remember the exact number off the top of my head. It's it's obscenely low. So. Trina Well, I find that figure, which I'll also put in the show notes. Tell me, how is it even possible to do meaningful inclusion when you don't have the funds to support it?

01:08:10:06 - 01:08:52:00

Trina Allen

The idea comes out of honestly, radical liberatory work of disabled activist who pushed and pushed their who risked their lives and risked their their freedom to be able to create a space in which the children that they knew would come after them would benefit from it. And that is the history of resistance in this country. And I think the funding of that and the ways in which we as a culture gate keep those things is it's we don't want to sound like we're anti that, so we just don't fund it, right?

01:08:52:02 - 01:09:24:09

Trina Allen

It is by design. It's not an accidental not funding and I would say that goes for all education. I do not as a teacher and I love being a teacher and I will continue to work under these conditions regardless. But public education is bleeding. It is not it is not just inclusion. It is everything. It is the level of deep need of our students for connectivity, for learning, for presence, and for emotional stability in a world that's provide that.

01:09:24:09 - 01:10:01:01

Trina Allen

And I think when it comes to civically, then you already have an open wound and now you're trying to treat it with 25 different. There needs to be I mean, every kid needs an IEP, right? Every kid needs an IEP, right? There should be no special in education. That should absolutely be that. And and because it's not and because the system is set, the false ideas of what human ability and production should look like, we need to find specifically inclusion, what we should be funding universal design.

01:10:01:03 - 01:10:11:01

Trina Allen

We should be funding universal design for everybody. And folks with higher support needs, whatever that looks like in whatever area they might have, that should be centered.

01:10:11:03 - 01:10:31:15

Erin Croyle

Right on screen. A universal design for living and learning needs to be embedded in everything we do, not just our schools. Circling back to idea funding. When it was enacted in 1975, it was supposed to cover 40% of costs for students with IEPs. Currently it's 14.7%.

01:10:31:20 - 01:10:32:05

Trina Allen

That right?

01:10:32:08 - 01:10:56:03

Erin Croyle

Schools can and do build Medicaid for the services their higher needs students receive. For folks who might not know children with disabilities that are significant enough to require lifelong support and care can apply for and receive what are known as Medicaid waivers that support home and community based living rather than institutionalization. Now, on the surface, this sounds like the perfect workaround, but it too is problematic.

01:10:56:05 - 01:11:21:01

Erin Croyle

So much so that the details deserve a podcast of their own. The short of it as we know, health care in this country is not particularly stable. The Affordable Care Act removed lifetime caps on Medicaid, but there's no guarantee those caps won't be introduced. Based on our election cycles, some might think that these concerns are alarmist or unlikely, but unfortunately they are not.

01:11:21:03 - 01:11:43:00

Erin Croyle

A good example. My son was born in 2010, just not that long ago. It's the same year that the Affordable Care Act was enacted, and had it not been, my son would have likely been denied medical coverage because he was born with Down syndrome, which is considered to be a preexisting condition. In addition to that, my son's medical complexities are many.

01:11:43:05 - 01:12:07:20

Erin Croyle

He gets medications that are thousands of dollars a month, and thankfully, our insurance and his Medicaid pay for that. But thinking about lifetime caps and what he's going to need over a lifetime, I don't want to ever think about what would happen if there was a cap on his medical coverage. As far as Medicaid payback laws, I very much get the why behind them.

01:12:07:22 - 01:12:27:17

Erin Croyle

But Medicaid doesn't take into account the money lost by families hiring lawyers to assist with the copious amounts of paperwork it can take to set up accounts in trust for your child. Because it really is that complicated. And then there's the lost income that comes with caregiving, and that's not a small amount. Trust me, I know this from experience.

01:12:27:19 - 01:12:57:14

Erin Croyle

There is nothing simple about any of this. It's complex. And as you mentioned, it's systemic. It's not just our schools. It's across all parts of society. It's intermingled. So much so that we have to look at the bigger picture to truly understand it. And a lot of our school administrators don't really see that. And all of this is harming children and it's causing undue hardship for their families, and it's further marginalizing people with disabilities.

01:12:57:19 - 01:12:59:21

Erin Croyle

From day one.

01:12:59:23 - 01:13:32:24

Trina Allen

100%, 100%, there should be for the things that you need for survival. And I would say belonging is certainly part of that. But just for the material of life, shelter, food, medical, that should be provided because we exist and it should be provided to the level of need. Right. So it is absurd to think about worrying about how much your child will cost and whether you can afford to save them.

01:13:33:01 - 01:14:00:19

Trina Allen

That is not a position in an ethical country. That is not a position in an ethical society. It's not. And yet it is something that we think about all the time, or whether with their life will look like when we're gone. I ruminate on that, and part of that is because there aren't the safety nets and it's it's a hard place to be, but it's also a place to move from because in my opinion, this never there's never an end to a laboratory struggle.

01:14:00:19 - 01:14:01:22

Trina Allen

Right. So.

01:14:01:24 - 01:14:31:13

Erin Croyle

Right. And I think that especially with folks, aging disability is something that impacts everyone's life. One in four Americans have a disability that impacts their daily life. And when you think about that, that means either you or someone you love or someone close to you will have a disability in your lifetime. And so for me, that didn't happen until my son came into my life, not in a meaningful way.

01:14:31:13 - 01:14:52:16

Erin Croyle

And so I think that's part of why I find origin stories so interesting, because I don't even know who I was before that happened. I would probably be embarrassed if I talked to 30 year old me about what people with disabilities need because I probably knew nothing. And that's why I think it's important to have these conversations.

01:14:52:18 - 01:15:20:02

Trina Allen

But so I think there are several things with that. One, we live in a society that intentionally teaches us not that by segregating children right? If you notice, if you watch the segregation progression, disabled people are sort of sheltered and loved in this very paternal, rustic, patronizing way when they are small children. Everyone loves the headstart that has, again, pro headstart.

01:15:20:04 - 01:15:39:16

Trina Allen

But, you know, that shows the video of the little boy with his new gait trainer. And it's just this thing and makes people feel good and great. And and he's included in the classroom in kindergarten and then he gets to be in third grade and the curriculum starts to change. And we'll he has a really great teacher of fourth grade, so it works.

01:15:39:18 - 01:16:01:03

Trina Allen

And then sixth grade happens. And that switch that you just see, maybe it's that teacher that just doesn't understand. And then pretty soon in seventh grade, in eighth grade, and then by the beginning of high school, he's alone in a room. It's just like segregation. But by the time he's 25, where in society is this man with this intellectual disability?

01:16:01:05 - 01:16:32:05

Trina Allen

And how is he included? And the answer is, you don't even know him. He has been so significantly excluded. The kids will remember back to him in preschool, but would have no consideration of how they would work with him at a job. Right. Right. They're gone. And then at 50. At 60, it's institutionalization. And that is a boy.

01:16:32:07 - 01:16:59:14

Trina Allen

It's a boy. It is a society based on eugenics. The idea that there is only one way to look. That there is only one way to be. And there's only one way to produce for a society that's all about production, exploitation and consumerism. Right. I suggest that if you don't produce, then you are not productive. That means if you don't produce for that system, because we all know, folks, we all produce, right?

01:16:59:14 - 01:17:19:24

Trina Allen

We are. We are the production of ourselves. Right? But if you don't produce in a very particular capitalistic kind of way, you're excised from society and I don't think I knew that at 25. I don't think I knew that at 15. And why? Why didn't you? And I know that when we were young, it's because they were stolen from us.

01:17:20:04 - 01:17:38:23

Trina Allen

And that's why inclusion is the primary most important thing that we should be fighting for, even when public education is a wound that we're like, my gosh, we're there to get. It's not the thing that we can let go of. It's the thing we have to fight for, especially in these cases.

01:17:39:00 - 01:17:59:20

Erin Croyle

I mean, everything you just said, I, I hope that I can maintain with my own neurodiversity my focus on this question, because I want to say, you know, what you said about the example of the child and how everyone loves him when he's young. I see it in my own son. He was little kid, cute and everyone loved him.

01:17:59:22 - 01:18:24:05

Erin Croyle

And I slowly, as he got older, saw that change from stares with smiles to stares with, not smiles, not welcoming, stares at stores in places. And you know, the tics and the quirks and the stimming that he does not as welcomed and I think about that. I think about our generation and how we were never exposed to anyone different.

01:18:24:07 - 01:18:52:12

Erin Croyle

And even currently, I think that we like to think that inclusion is happening. But when you look at the statistics, right, in 2022, more than two thirds of students served under IDF with the following disabilities. They spent 80% or more of their time during the school day in gen ed classes. So speech and language impairments was 89% specific and learning disabilities 76% other health impairments 71%.

01:18:52:14 - 01:19:26:00

Erin Croyle

Development mental delays 70% visual impairments 69%. But when you look at more significant disabilities, deaf blindness, that percentage drops to 31%. Intellectual disabilities 21% and multiple disabilities 16%. So inclusion is happening in a positive way. But when we look at students who are more different than typical and I say in quotes, typical because what is typical? What is normal?

01:19:26:06 - 01:19:37:21

Erin Croyle

What is it? We don't even what those words are so ridiculous. And I want to acknowledge that. But people who are different from the conforming are less included.

01:19:37:23 - 01:20:08:18

Trina Allen

So is 100% related to support need and it's 100% related to an ideology as the education has an expected outcome. And both of those are problematic. And based on a white supremacist standard, when you specifically talk about that, it is so hard because in my previous classroom, the majority of my students were mostly disabled. And I think there is this really big misunderstanding.

01:20:08:19 - 01:20:58:14

Trina Allen

You know, the presume competence campaign is super important. And that is because when people have communication challenges, whether that be from a motor issue or whether that be from an intellectual disability issue or a multitude of those factors push together. It changes everything. And the ways in which my students with higher support needs and multiple modes of multiple disabilities really the way in which they have been treated, the way in which they have been infantilized, the way in which they have been segregated, the way in which they have been treated as a guest in their own school is honestly feel the 3000 mile move.

01:20:58:15 - 01:21:27:18

Trina Allen

I couldn't do it anymore. And it sounds terrible because it's like second area trauma is a real thing. And I acknowledge that I'm a human being and I love them. But it's not about me. Right? But at some point I'm getting paid for it to be about me and the look on a face of a child who a particular instance and this is one of those horror stories where it's not or to anybody who doesn't understand is a misunderstanding to most people, but a horror story to the person living it.

01:21:27:19 - 01:21:46:11

Trina Allen

And I had a student who used a AC and we were on campus high school, and he took his AC with them. They were going out to walk the track for just like a quick break before we had between reading and math. And he saw a ball because they were doing soccer or something that the class wasn't interrupting.

01:21:46:11 - 01:22:06:03

Trina Allen

You just grab the extra ball when he was playing with it. And the PE teacher on campus who should have known him, right. Should have known him, but didn't try to take the ball back and says that's not yours. And of course, he had set his AC down because he had run to go grab the ball, which he wanted to throw up and play with.

01:22:06:04 - 01:22:29:24

Trina Allen

Right. So he has AC on the ground and he grabbed it back. It was like not, you know, like I'm playing with it. You have your turn for sharing that, like with his sister. And she said some things to him. And luckily one of the students that it was in my reverse inclusion program, she ran over there and explained, his AC is right there.

01:22:30:00 - 01:23:00:04

Trina Allen

Hold on. And she said in front of him, What? He can't even talk. so this is like a now a very difficult situation for multiple reasons. My student, I have seen him cry once before. His knee came out of socket and he exploded in tears. That's the only time I've heard him cry. But all of a sudden and my door comes open and it's about 2 minutes before they're supposed to be back anyway.

01:23:00:06 - 01:23:25:20

Trina Allen

And the student is in tears hysterically. And I'm like, my God, his knee is okay. I'm in the cosmos. And luckily the reverse inclusion student had been there to tell me what had really happened because while these are amazing, he probably wouldn't have been able to locate like this teacher dehumanized me. And she said to him, according to my my student, you have your own balls in your own classroom.

01:23:25:20 - 01:23:28:18

Trina Allen

You can play with us. You don't need to play with arms.

01:23:28:20 - 01:23:30:15

Erin Croyle

Are you serious?

01:23:30:17 - 01:24:05:19

Trina Allen

Yo, I'm a lover most of the time. But you know, she needed to get some help. I was so mad. I was so livid. And of course, you know, my focus is on the students and also my other student who tried to navigate this. She herself has a disability, which is more on the like flash reactive aggression. And she kept it together instead of popping the teacher what she easily could have done and wanted to make that very clear, which I quite frankly understood.

01:24:05:19 - 01:24:25:07

Trina Allen

Yeah, but then it got him back to me because he was the primary concern. And of course I called his mom. I called everybody in the book, I called my supervisor, I called her directly. It was like, don't you ever, you know, that whole thing. And can I tell you all that happened? Nothing.

01:24:25:09 - 01:24:26:16

Erin Croyle

Of course.

01:24:26:18 - 01:24:46:02

Trina Allen

Nothing. Just misunderstanding. She didn't. She didn't know. And again, like, how do we live in a society where it's a I didn't know to treat you like a human being.

01:24:46:04 - 01:25:08:09

Erin Croyle

And this this is the problem I have when we talk about I work. Yeah, because the inclusion and that work, it doesn't include disabilities. Because if that was a student of color, it would be a completely different reaction. I mean, if the student had a disability and was a student of color, it wouldn't matter. It would still have happened.

01:25:08:09 - 01:25:18:22

Erin Croyle

What I'm saying is it was a non-disabled student of color. Let me be clear. Yes, I am. I don't feel like that was necessarily happen, especially the comment about you have your own balls.

01:25:18:24 - 01:25:52:17

Trina Allen

Right? Yes. The segregation piece. I think that when we look back on histories of resistance, right. We can look back on segregation and go, when was it ever good? Right? When was segregation ever for beneficial for the segregated party? And that is never there's something to be said about safe space. All right. That's real. That's different. That is led by and for people in an oppressed group making space for themselves.

01:25:52:17 - 01:26:29:15

Trina Allen

Right. That's different than a segregation and force by a societal hierarchy. You can see exactly what you're talking about is racial segregation was abhorrent. Disability embolism, segregation is abhorrent. And there is no place that we just allow it. Like in school, we don't allow direct segregation besides ability. We do it 100%. We do it 100%. In our intention and our focus, we segregate children all the time based on race and the ways in which it plays out in school.

01:26:29:21 - 01:26:57:11

Trina Allen

And I wish I could be more articulate about that. But it's the backdrop of everything. But it's not legally written down, right? It's not legally written down. It's legally written down for intellectually disabled students. We can give you percentages on when they are segregated and then it is absolutely, absolutely black disabled students are provided the absolute least inclusion.

01:26:57:13 - 01:27:20:17

Trina Allen

And that is based on the idea. The anti-Blackness and Abel ism is really the same thing is really the same thing. I really follow the working definition of Abel ism by T.L. Lewis, and if you ever look that up, it's quite beautiful and terrifying and terrible, but it's a good explanation of the linkages there, and we just accept it.

01:27:20:17 - 01:27:24:01

Trina Allen

And then they reframe the situation by saying it's in their best interest.

01:27:24:02 - 01:27:24:20

Erin Croyle

Exactly.

01:27:25:01 - 01:27:28:00

Trina Allen

And you're like, It is, but it's not.

01:27:28:02 - 01:28:11:23

Erin Croyle

Well, it's not. And also, I find that because of the generation of parents being raised in even more segregated areas, we question whether our instincts are right to fight, to have our child included, because our minds are still stuck in other areas. The working definition by Talia Lewis is that it wasn't. This was last updated and I'll put it in the show notes in 2020 to have January a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence and fitness.

01:28:12:00 - 01:28:44:08

Erin Croyle

These construct ideas are deeply rooted in eugenics, anti-blackness, misogyny, colonialism, imperialism and capitalism. This systemic oppression leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, health, wellness, and or their ability to satisfactorily, literally reproduce, excel and behave. You do not have to be disabled to experience ableism. Yes.

01:28:44:10 - 01:29:13:08

Trina Allen

It's about behavior. Do you behave and can you produce and being a teacher? Of course. Of like, do I want my students to behave? my God, yes. Can we be nice? Yes. That's different. Between being nice and producing an expected behavior. A lot of what we talk about to students we tell them to do and when we redirect them Head doesn't have a lot with being nice, right?

01:29:13:08 - 01:29:39:03

Trina Allen

Being kind. It has a lot to do with being in control. And we need to be focused more on what actual kindness and inclusion and reaching the kid, rooting out that hand right When we start focusing on some more of those values and making sure that all students have with it the support level that they need in different areas, that's universal as I move, Right?

01:29:39:06 - 01:29:47:20

Trina Allen

That's that's making it safe and welcoming, loving space for everyone involved. And we don't have that right now. We don't have that society.

01:29:47:22 - 01:30:08:22

Erin Croyle

We don't. And I hope we have time to get to this discussion about universal design for living and learning. And it might be a separate one. We'll see about time. What I do want to want to kind of focus on is what can we do now? What does inclusion look like? And I want to start with early, so and I'll share my own story.

01:30:08:22 - 01:30:39:05

Erin Croyle

You know, my son, again is just 1014 when we lived in the D.C. area, the school, our community school, I really wanted him to go to. So I advocated for that for kindergarten. And he was going in. For anyone who doesn't know, reverse inclusion is when you have a classroom pretty much designed for students with disabilities, but you bring in typical non-disabled peers and it's a great model because it should be inclusive, but it's just not.

01:30:39:05 - 01:30:41:19

Erin Croyle

Would you say that's right in your experience?

01:30:41:21 - 01:31:04:12

Trina Allen

Yes. So it is harm reduction. So for my last several years, they made up a class that was sort of no credit, no credit. And those students were either funneled in because they had a free period and they needed a place to get somewhere, or the students genuinely wanted to take my class. And there was 8 to 10 students per period and they would change every quarter.

01:31:04:18 - 01:31:24:04

Trina Allen

And at first it's very like school like, but then it becomes like family, like. And then I'm like, Dude, you haven't been in my class for two years. What are you doing? You didn't go, did you go to math class? Because like what? So it becomes very familial in a way that I wish school was their birthday get celebrated.

01:31:24:04 - 01:31:52:07

Trina Allen

They get to go on field trips with us. It becomes a benefit for them and a benefit for my students. While that family loving aspect was, I would say, the best part of my teaching career so far, it is cultivated by personality, right? And this particular set up in this particular moment, and it does not allow for any systemic change.

01:31:52:09 - 01:32:18:23

Trina Allen

In some ways it is limiting even more than not doing it at all. Its benefit, I would say absolutely to do it, but it sort of makes everyone around feel good about the scenario without actually changing it, right? So that when we went to dances and we went to the Disneyland trip, we did all this, my, my students had peers and knew them that we were cool.

01:32:18:24 - 01:32:36:13

Trina Allen

It was a fun classroom to be. And then it becomes that and it becomes like a sibling relationship and it's beautiful and it's gorgeous and it's not sustainable. And doesn't go anywhere because it only happens because I chose to do it. I'm not there at that school anymore and there's not a single to any of the segregated classrooms anymore.

01:32:36:15 - 01:32:48:04

Trina Allen

So it's not replicated, but it is harm reduction that you do temporarily while you work for systemic change. It's more segregated now than it was before I started.

01:32:48:06 - 01:33:13:18

Erin Croyle

Yeah, I think I think that's exactly what the problem is. We're kind of waiting for systemic change. And in my experience, those of us who are working towards that change are also parents or caregivers of kids with disabilities. And so we cannot fully dedicate ourselves because of the systems working against us as caregivers.

01:33:13:20 - 01:33:37:23

Trina Allen

And the fact that they don't know. Do you know how many times how many papers I have been in? I'm like, You're plainly lying. And as I got tenure, that's right. As I got tenured in my position became solid, I started getting I would say my classroom was lovely, right for us and lovely as a segregated table as design could be, right?

01:33:37:23 - 01:34:11:01

Trina Allen

Yeah. And I started getting the parents that were, quote, challenging, which means lawyered up because my high school, the high school, they realize nothing I say matters, but my lawyer says how it does. And that's that's real talk. That's real talk. And so that's what ended up happening. And as I started realizing, I learned I learned more about educational law through the lawyers of my parents than I ever did in school.

01:34:11:03 - 01:34:32:13

Trina Allen

And also from our own district lawyer who was also lied to. I mean, it's just why you have no idea. There's so much to talk about that that sidestepped it. But because of the fact that you have to fight and you have to have money and power behind you, like it's not just a matter of, we're tired.

01:34:32:13 - 01:35:09:24

Trina Allen

It's a matter of actual resources and knowledge. They're told that's not available, that's not true. You just did it for another parent who had a lawyer. It's like a literal literal. It could be IEP back to back and in one that one is unavailable. And in the next, if you did a cross section of race and class regarding support services and dis services like speech therapy and things like that, who get speech services within a multiply disabled classroom.

01:35:10:01 - 01:35:34:15

Trina Allen

And of course there's a separate problem of then over pathologizing black children for sure. I'm not talking about that. That's a separate issue that we can absolutely talk about. But the issue of black children who absolutely need speech language services, who have an actual speech language, disability and need an AC, and do they have that and what are their services like?

01:35:34:17 - 01:36:12:03

Trina Allen

Is it 30 minutes in a group group therapy once a week, twice a month? Because that's appropriate. It's not you know, it's not it's not appropriate at all. And yet, if you did that longitudinal study of the rates of support services based upon race and class, we would tell ourselves it is unbelievable. Parents who don't have power, money behind their name and social capital for whatever reason, cannot affect change in the same way the people who do can't.

01:36:12:05 - 01:36:16:12

Trina Allen

It doesn't matter if you fight day in, day out does matter.

01:36:16:14 - 01:36:24:20

Erin Croyle

And that actually circles back to what I've seen in my own experience and exactly where I want to go to next, which is.

01:36:24:22 - 01:36:25:11

Trina Allen

Given.

01:36:25:11 - 01:37:08:01

Erin Croyle

The flaws in the system. Right. What can we do right now? So I'm, for example, and not loaded yet, but I am a strong advocate who has a level of privilege and so I can take the time to read and understand how to advocate for my son and for other children with disabilities. So when he was leaving his reverse Inclusion preschool, which was the model that they used in the district that we lived in in Northern Virginia, flawed as it may be, until we can have universal pre-K in our public schools, it was pretty great considering, especially since the private preschools in the area were expensive and the ones that would actually help my son

01:37:08:01 - 01:37:18:01

Erin Croyle

and let him attend, their school ended up just putting him in a special classroom. They're like, Why am I paying for this? Yes, I'm not going to pay for this.

01:37:18:03 - 01:37:20:09

Trina Allen

Okay? You're not going to have I'm.

01:37:20:09 - 01:37:25:02

Erin Croyle

Not going to pay for what he's going to get regardless. I thought I would do better. So by.

01:37:25:07 - 01:37:25:20

Trina Allen

Right.

01:37:25:22 - 01:37:54:15

Erin Croyle

It's infuriating. So when we had our transition meeting to get him into kindergarten and I've written about this, but it's it's heartbreaking. I had to fight for my son to be included in a general education classroom in kindergarten. And he got in and he was the first kid with Down syndrome with that significant of a disability, if you will, to be in a general ed classroom at that school.

01:37:54:15 - 01:37:58:09

Erin Croyle

Yes. Is that the 2010?

01:37:58:11 - 01:38:26:22

Trina Allen

I know, I know. I know. It's so painful. You know, I remember and this is not exactly comparable, but it's similar. I had a student to one of the to my class that reversed include a kid who really wanted to take one of my students is mostly disabled with a cognitive disability and quadriplegia. She uses an eye gaze, a C right high tech and her math is obsolete.

01:38:27:00 - 01:38:58:12

Trina Allen

We can talk a lot about the misplacing of her in my class and also my decision to not focus on that because she wanted to stay. So I will focus on her decision. That kid wanted to take her to the math class as an inclusion day. Just just math one math class. And the math teacher was like, okay, okay, you know, like it.

01:38:58:14 - 01:39:16:08

Trina Allen

And they did. And of course, it went totally well and she had a blast and it was great. And, you know, everything was fine. And she showed off and she does very, very much that personality type. And it wasn't a fight to get her there. It wasn't like we were going to fight for her to be in the math class or anything.

01:39:16:10 - 01:39:39:02

Trina Allen

But it was one day and when I had broached the subject of it being more, it's about it already worked. But no. And so and pre-K, you can fight right in K you can fight, but by high school you need like five layers. It's not even a platform. You can quit. It's not even a platform to quit.

01:39:39:04 - 01:39:57:12

Erin Croyle

Well, in some cases too, though, Trina I share my personal experiences because I think it's important. I do talk to my son about sharing this and he's okay with it. And the question of that being okay is another question for a whole other podcast. You know, consent and what that means.

01:39:57:14 - 01:39:59:08

Trina Allen

Yeah, but I totally hear you.

01:39:59:10 - 01:40:21:04

Erin Croyle

But here's the problem that I am running into. It was a fight in elementary school to keep him in a speech therapist I still like. Yes, I only talk about PTSD. I still remember the calls I would get and I could feel at that school. The evidence, the way they were trying to stack up, how he didn't belong.

01:40:21:06 - 01:40:26:19

Trina Allen

They were making their case. They're making the case They're making their case that they're their service was to make the case that he doesn't.

01:40:26:19 - 01:41:01:16

Erin Croyle

Right. And then I have friends and also other parents and caregivers that I have helped and other people I know through our networks. Because when you have a kid with a disability, you just know other people and you get what you say time and time again. Ah, you know, the psychological testing of people using IQ to place kids in classrooms or multiple disabilities classrooms when we know that IQ testing and the stuff that they say is not IQ testing but really is is antiquated and is not a measure of our children's intellect, it.

01:41:01:16 - 01:41:22:23

Trina Allen

Is based on a system that is able at its base for them to fail. The whole point is the standard deviation of norm. Yeah, I know. It's literally I always say, I know you have to legally do this for my daughter's IEP, right? I know you have to legally do this, but I had no interest in talking.

01:41:23:00 - 01:41:49:03

Erin Croyle

I refused to allow the schools. I had my son tested by a doctor at Johns Hopkins, which is one of the best medical places in the country. And the number that was presented to me after that and the analysis that she gave me, this doctor, highly regarded, I just wanted to burn it because I knew that it was not a measure or a reflection of who my son was.

01:41:49:05 - 01:41:55:15

Erin Croyle

And in my conversation with her, I was I just thought, how are you a professional in this field?

01:41:55:17 - 01:42:16:20

Trina Allen

Thank you. And they really believe it. They believe being as I know your son, right? Yeah, I can. 300,000 times tell you that what he is and how he is and the ways in which he is and the ways in which he's going to become and the ways in which he is becoming. We'll never look on that test.

01:42:17:00 - 01:42:47:10

Trina Allen

And the reason why is because that test was not decided for him to become that test was excited for him to go away. Right. Was to backtrack. It was to push him out. He is amazing. And whatever that test said was not trying to capture that. Luckily, again, it's nice to work in the same school that your child will be assessed at.

01:42:47:12 - 01:43:03:23

Trina Allen

Right to say that. So I know the tester of my child who also has Down syndrome. I was like, girl, play with her, have a good time. But please understand that when you come back with not testable, I'm going to be like saying, Yeah, you did your job right?

01:43:04:00 - 01:43:30:05

Erin Croyle

And I anyone listening to this who is in a similar situation, I want you to hear Chinas words because to me, what you said about my son. Because to me, that's every every kid who was subjected to three, 3%. Right. And I want you to hold close to yourself and remember that students without disabilities are never subjected to the testing and the scrutiny and the microscope that our children are put under.

01:43:30:07 - 01:43:45:19

Erin Croyle

And it breaks my heart that we have to put them through this. And I refuse every single test possible because of that. He does not deserve to be analyzed like some experiment, and none of our kids do.

01:43:45:21 - 01:44:14:07

Trina Allen

No, they really don't. And there is nothing wrong with saying this is where he is when it comes to literacy. This is what he is doing. When it comes to social skills. It's fine to talk about what a kid is doing right. There's nothing wrong with that. I want to know those things. I want to know if when you asked him last time if he wanted peanut butter and jelly and he said yes, whether that actually reflected what he wanted, I want to meet his needs.

01:44:14:09 - 01:44:37:15

Trina Allen

Right. Right. That's different than assessing where he is on a scale that's meant to make him an outlier. It's just a very different thing. The purpose is different, right? Is the purpose to meet his need? No, this assessment shows us that this would work. And what? No, You know that that's not what you're doing. Not looking for something?

01:44:37:17 - 01:44:49:16

Erin Croyle

No. Some of the testing is to try to get a picture of who they are and what their needs are. For one thing that I've experienced in the district we're both in now, I don't think happens many other places.

01:44:49:18 - 01:44:50:00

Trina Allen

Yeah.

01:44:50:06 - 01:45:00:14

Erin Croyle

Is in honesty from educators that the stuff that they have to do and they have to show us is not a reflection of who he really is. And they recognize that.

01:45:00:19 - 01:45:01:01

Trina Allen

Yeah.

01:45:01:07 - 01:45:09:07

Erin Croyle

The other thing that I have experienced is I have had occupational therapist and speech language pathologists for those listening.

01:45:09:07 - 01:45:10:04

Trina Allen

So that's a.

01:45:10:06 - 01:45:39:04

Erin Croyle

Right. We all know the acronyms, but not everyone does. I have had my son's educators take the time to do the assessment as needed with the rules and the time constraints, but then take the time to give my child the adaptations, the time that he needs for those standardized tests and the information they come back even surprised me when they gave him what he needed to show what he knows.

01:45:39:06 - 01:45:47:01

Erin Croyle

He knows way more than even I as his biggest champion, realize. Yes, but that rarely happens.

01:45:47:03 - 01:46:18:09

Trina Allen

So that's why we're really lucky. And I'm going to say this like I've worked now in the field since 2005, so that makes me really old. So within that time, the discrepancies services provided it and the district that we're working in or working with or whatever is far, far better. So I will tell you, I had to for my daughter and I'm a teacher within the district in my previous district, the teacher within the district power, a lot of power to be honest.

01:46:18:12 - 01:46:47:05

Trina Allen

And within that framework I had to fight to get her a half an hour of speech and language a week, and then two additional sessions of groups I had to fight. It's not like I just got that. I went through the channels. Love you. I respect your report. I appreciate the time you put into it. I'm just going to go ahead and let you know that I looked at the recommendations and I'm going to request independent evaluation.

01:46:47:05 - 01:47:10:02

Trina Allen

And you had to fight and had to do that. You know, And she got it and she still didn't get it out. And I will say that's why I do believe it's possible. And so when we talk about systemic problems, I think it's really important to understand how bad it really is, because I don't think people understand how bad our culture really is in regards to able I and how deeply ableist and eugenic everything just based on eugenics.

01:47:10:04 - 01:47:26:22

Trina Allen

And that's really a dark landscape to go from. But where do we go moving forward? And I think this is one of those ways in which you disrupt. I have to follow the teaching, right? I mean, I got to do my test. I know how to do it. I can do it. You know, I'm going to make it fun, though.

01:47:26:22 - 01:47:48:06

Trina Allen

You know, any kid that I'm forced to subject to a standardized test is going to have a real good time with me. And I think that you can disrupt those ways by making the actual lived experience better. You can disrupt by what you're doing, saying no until you absolutely have to for this particular thing. Right. You can talk about how they're invalid measures.

01:47:48:06 - 01:48:06:03

Trina Allen

I think that's important. But I think more than anything it's about the ways in which you treat the people in front of you. Yeah, you're not going to work within the system and change it without having to follow the things you don't like. That's why I love being outside of the system, quite frankly, and I love being a disruptor in the community.

01:48:06:03 - 01:48:29:07

Trina Allen

I love being a protester or an activist. That's great. But I also need jobs. So and I think that those ways, like what you just talked about, the speech pathology, doing what they need to do, but then say, let me show you a list of everything he said. He knows this, this and this. Let me tell you a story about what he did.

01:48:29:09 - 01:48:59:20

Trina Allen

Let me show you a video, a picture about something he is proud of. Let me teach him how he can show you. I think the more that we can find in ways in which we interact with the individuals in front of us in a humanistic and loving and equal nonhierarchical way is one important and then two, as advocates, there is that superhero aspect of it's my job to fight, and that's my job to fight.

01:48:59:20 - 01:49:33:04

Trina Allen

Absolutely. As an ally, Yes. As a person with power. As a person of privilege. Yes. Yes. Yes. 100%. As a teacher, I am in power over you by design. I will absolutely fight for you. And the ways in which we can shift that focus because children don't always need to hear hero. They need to be the hero ways in which they can do that and the disruption of that, that teaching them that these systems are wrong as opposed to you are wrong.

01:49:33:06 - 01:49:42:11

Trina Allen

Telling them outright took us all the time. I don't believe in this. Yeah I think that that matters.

01:49:42:13 - 01:50:01:21

Erin Croyle

One, I think too I mean, there's so much here, Trina, even as parents, because we've been raised in such a segregated, ablest world, even as parents, even as someone who loves someone and thinks of our children with disabilities as the best thing in the world and thinks that they think.

01:50:01:23 - 01:50:02:20

Trina Allen

Yes.

01:50:02:22 - 01:50:23:08

Erin Croyle

The best of them, I sometimes underestimate my son. And I have to remind myself, right, so to speak, to him like a 14 year old, because his expressive language is not there. But my gosh, his receptive language is is there. Yes. And he gets it and they get it and they want to know.

01:50:23:10 - 01:50:24:22

Trina Allen

brilliant. Yeah. Yes.

01:50:24:24 - 01:50:46:02

Erin Croyle

You're working for them and you're on their side and they want to be taught things. I mean, I see people. Yeah. Because my son doesn't speak. And by the way, I talk about my son as an example, but I'm speaking for all kids. I do this podcast for every one. I want to change for everyone, but I'm not going to give examples of other kids because it's not okay.

01:50:46:02 - 01:50:58:23

Erin Croyle

Yeah. So I think that's so important to point out to folks, This is not about me making the world better, so my son gets what he needs. This is about using the examples so we can all work together to make the world a better period.

01:50:59:00 - 01:51:03:19

Trina Allen

And that's the only way it's going to be better for your son. Our liberation. We're tied together. Yeah. Yeah.

01:51:03:21 - 01:51:24:08

Erin Croyle

Exactly. We talk around our kids like they're not there because they don't speak as much or they communicate differently. And I think that that is one of the main many, many, many reasons inclusion is so important because they just need to know that they're part of it. They're part of the conversation representation being at the table. Yeah, they get that.

01:51:24:10 - 01:51:50:00

Trina Allen

I totally agree. It's so hard too, because I think once we start letting go of this idea of what a person should look like should be like, I get upset on this age appropriateness sometimes when people say, I'm going to talk to him like he's 14. And then when you're talking about someone who has really high support needs right, everyone is like, well, that doesn't work.

01:51:50:04 - 01:52:11:08

Trina Allen

And it's like, No, wait, I'm going to talk to him, who he is, where he is. I'm going to have joint attention with him. I'm going to figure out the ways in which he communicates and I'm going to mirror that back to him and I'm going to take his lead on that. And I'm going to presume competence. And if I don't know if he understands a concept or not, I'm an error on the side.

01:52:11:08 - 01:52:39:09

Trina Allen

He does. That's the presumption of competence. And if my conversation doesn't benefit in any way, I'm going to continue to figure out what his responses are or his initiations of conversation are so that wherever he's at and whatever he wants to talk about, that's centered because the initial assumption by most people is it doesn't pertain to him because we've segregated.

01:52:39:11 - 01:53:11:11

Trina Allen

So he's not even part of the conversation. And then the first part is placement. Like, we'll let you sit at our table, we'll let you yeah, we'll let you. And then it's going to be like, Well, yeah, and I guess you'll need a few books to sit on so you can reach the, you know, whatever until we understand that that table has been built to deny him access, that he has to be the one to build his seat at that table that fits him, build his seat at that table, that helps support everyone else around him.

01:53:11:13 - 01:53:36:23

Trina Allen

That's where it's at. It's not just placement. And it's not just presumption of competence. It's all of those things together with and understanding that he is belonging. That's so hard to produce when like your hands are tied and the tools or whatever, but the least that's the least we can do is the least we can do is listen.

01:53:37:00 - 01:53:38:24

Trina Allen

Right. Listen to him.

01:53:39:01 - 01:53:43:00

Erin Croyle

Yeah. And take the time to listen. Because you.

01:53:43:00 - 01:53:44:23

Trina Allen

Have forgotten. God.

01:53:45:00 - 01:53:58:21

Erin Croyle

You have to listen differently and just use a different set of skills because it's it's a different conversation. You have to connect with a lot of people before you can learn how to listen to them.

01:53:58:23 - 01:54:22:20

Trina Allen

Yes, I totally agree. Everything is so based on speaking like the verbal ability. Right. That's what we think. That's what we believe. But realistically, we do so much other language and communication. So much of the ways in which we interact are not anything about that. But we forget that we're we're talking to disabled folks who are not speaking, right.

01:54:22:22 - 01:54:45:17

Trina Allen

It's like we all of a sudden assume that the words aren't there, that the expressively isn't there. It's like we can't have this interaction. And you're like, what? Like 90% of what we do isn't even that big, so why would it matter so much? But it does. And so that deep listening and that deep understanding and trial and error try five different language systems.

01:54:45:17 - 01:54:50:06

Trina Allen

And if they don't work you trying. But it's not giving up.

01:54:50:08 - 01:55:10:05

Erin Croyle

It's not. And I think too, you know, so often we say behavior as communication and yeah it is except that what is behind the communication and what else is going on. Right. When we think about what our kids are up against and the able is that they experience I think in a good example is in the medical community.

01:55:10:11 - 01:55:10:20

Trina Allen

Yeah.

01:55:10:20 - 01:55:17:20

Erin Croyle

You know just finding an eye doctor. Right. That will actually take the time.

01:55:17:22 - 01:55:18:06

Trina Allen

yeah.

01:55:18:07 - 01:55:40:19

Erin Croyle

They could be related to the fact that even though they have glasses, maybe their eye doctor really wasn't doing due diligence to treat them right. Or the fact that like again, my son has had hearing loss, but it went undetected because the first audiologist was ablest and said it's okay if you could hear out of one ear and was willing to just let you.

01:55:40:21 - 01:55:41:03

Trina Allen

Right.

01:55:41:05 - 01:55:53:10

Erin Croyle

And then the school before he even had a hearing aids, the school back in Northern Virginia claimed that they didn't use FM systems, which I don't know, a school that would not use those extra things.

01:55:53:10 - 01:56:16:13

Trina Allen

They didn't have them, they hadn't done it yet. Means they can't they Right. I just I every single one of those I can say Yes. My daughter, I wasn't there. Thank God. But my partner took my daughter to an audiologist who refused to speak to her. But totally talked to my partner. And Erin was like, you know, you could ask her.

01:56:16:17 - 01:56:35:10

Trina Allen

At first it was like, I'm going to gently lead you to this. Clearly you've been raised in the segregated society. And then it was like, I don't know, ask her, you know, like, I don't know. Ask her. I don't know. Ask her. I don't know. Ask her. And the fact that you couldn't take that, you know, like is just painful in itself.

01:56:35:12 - 01:56:59:07

Trina Allen

And then when to get real, like when are they doing it? Okay, well, this is more than just this is more than just ignoring her. He's being made at this point. He doesn't want to he doesn't want to start knowing when those things happen and then knowing if that audiology report was any good. And now medical decisions are being made off of whether she has surgery or not.

01:56:59:09 - 01:57:07:21

Trina Allen

Right. Then we could talk about what all the ablest things in regards to that, because she has to be in a hospital and have surgery, you know, all the all the things. Right.

01:57:07:23 - 01:57:09:24

Erin Croyle

But it is all related.

01:57:10:01 - 01:57:33:21

Trina Allen

It's all related. It's all related and every single one of those things that you just mentioned is same. And it cannot be recapitulated over and over and over and over and over again unless that's the way it's meant to be. Right? We couldn't live in a racist society where all these things keep happening, keep happening, keep happening unless that was by design, Able is and doesn't accidentally happen because of bad players.

01:57:33:23 - 01:57:50:11

Trina Allen

There are bad players, there are bad apples. There are many people we can talk about that. That's a very small percentage of what is actually happening, right? It's by design. That audiology report is really expensive if he gets what he needs. Yeah.

01:57:50:13 - 01:58:02:05

Erin Croyle

It is. It is. But getting back getting back to inclusion in schools, I think it's important to note that, yeah, you know, behaviors, communication, but we really have to push.

01:58:02:07 - 01:58:02:21

Trina Allen

Out to.

01:58:02:21 - 01:58:08:15

Erin Croyle

Understand the root of the behavior before we just assume that it is something. Yes.

01:58:08:15 - 01:58:39:22

Trina Allen

Thank you, behaviorists. And again, my early career I believed in ABA because I thought that was the standard. That's what I was told. I got out and then after about a few dozen, I better try harder. I learned very quickly that wanting that wanting someone's behavior to tell me what was in their soul, to tell me what support they needed is so wrong.

01:58:39:24 - 01:59:06:17

Trina Allen

And it would be so wrong to suggest that what I do is a direct relation of who I am right with all these constraints around me. And I think that finding out the why and finding out the need, if you look at a kid that has a behavior that you might not want to see, like fighting or something that is challenging to deal with, and you're only looking at it as a way to get them to stop biting.

01:59:06:17 - 01:59:28:07

Trina Allen

You are truly, truly, truly misguided. So the first step is trying to figure out what they're trying to tell you or whatever the communication piece that more than anything is why? Like what you're talking about, why is there that need in the first place? Is this environment super overstimulated or is it they're lonely or is it like that real human need?

01:59:28:07 - 01:59:41:21

Trina Allen

And the assumption, though, is that both, especially folks with intellectual disabilities, folks, don't give them access to human emotion. It's not just presumption of competence, it's presumption of humanity.

01:59:41:23 - 02:00:07:20

Erin Croyle

Yeah, I want to take this part of the conversation and go back to grade levels and inclusion because COVID aside, the pandemic and how that was for students with disabilities, I feel like inclusion is far easier in grade school. What I notice in my own experience and what I've heard from some of their peers is that when you enter middle school, it changes.

02:00:07:20 - 02:00:37:16

Erin Croyle

And that's what I saw with my own son in that you don't have one teacher. The classrooms are different. It's harder. And between that, my son experienced anxiety so extreme this past school year that he refused to go to classrooms and we were having him do General Ed. And what's interesting in the school district that Trina and I are both in is you can have your child participate in Gen Z if you advocate with the IEP to do that.

02:00:37:18 - 02:01:01:21

Erin Croyle

But there is one school that has something that's called a community based classroom, and it is it is more of like a cohort model that, you know, you have students with more significant needs who have to basically say, we're going to go off the standard diploma track to go into this classroom, which is a whole other can of worms that is just ablest and gut wrenching.

02:01:01:21 - 02:01:02:16

Erin Croyle

But anyway.

02:01:02:17 - 02:01:06:14

Trina Allen

Yeah, it's illegal. It's a legal play. That sucks.

02:01:06:16 - 02:01:12:17

Erin Croyle

It sucks, right? Because it's basically saying that I'm going to lower my expectations because I see my child's needs now.

02:01:12:18 - 02:01:30:01

Trina Allen

Yeah. It basically suggests that folks who with an intellectual disability don't deserve a diploma, Right? Which means it means that a diploma is based on a very specific ideology of understanding and cognition, and that is inherently able.

02:01:30:03 - 02:01:31:02

Erin Croyle

Yes.

02:01:31:04 - 02:01:33:22

Trina Allen

And to sign that document, I.

02:01:33:24 - 02:02:06:12

Erin Croyle

Know it's hard and it's I get it makes me cry every time, because the systems force us as parents to take opportunities away from our children, to give them what they need in the moment. Yes, I think so many people go through this. I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track.

02:02:06:12 - 02:02:11:22

Erin Croyle

Yeah, I tried to help my son since he was two.

02:02:11:22 - 02:02:12:24

Trina Allen

With yeah, reading.

02:02:12:24 - 02:02:20:04

Erin Croyle

Programs, all sorts of things. The thing is, there's no cookie cutter like a kid with Down's syndrome is one kid with Down's syndrome.

02:02:20:06 - 02:02:21:06

Trina Allen

Thank you. Right.

02:02:21:12 - 02:02:45:23

Erin Croyle

Who is one kid with autism? Is CP. Like, he's. He's brilliant and he wants to learn. So what I experience this year is not only did he have extreme anxiety, not only do I know that probably a lot of his non-disabled peers in Gen Ed stared at him, and I know that some kids are nice, but I do know that other kids are not.

02:02:45:23 - 02:03:22:05

Erin Croyle

And Arlo has a 1 to 1, so at least I know that he was protected. But Arlo also is a human being who wants to feel successful and proud of himself. And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is, I find myself blaming myself when I think that our schools, once we get to a certain level, it's not parents failing, but it's our schools not offering enough options for kids with more significant needs.

02:03:22:05 - 02:03:38:13

Erin Croyle

Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that they reach a certain age and there's no choice anymore. There's no other option anymore.

02:03:38:15 - 02:04:06:00

Trina Allen

Right. Okay. So first off, I specifically in this situation, I want to commend you for doing the deep listening that your child with. It is so important that we do that. So while we're on the fight for inclusion, it cannot be on the back of our individual child. And listening to what he needs in the moment, listening to him is the biggest fight of Abel's that you will ever do with him.

02:04:06:04 - 02:04:35:02

Trina Allen

He told you what he needed. You listened so good. Good for you. That is what a mom does. And the issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things, that math class needs to be structured. These are the standards and every single kid in it is at a different place and it needs to be supported in that way.

02:04:35:04 - 02:04:56:24

Trina Allen

Do I think it can be done? my God, Math is like the easiest. You know, it becomes a more complicated in like history and English, but it doesn't have to be if the design is universal. Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son.

02:04:57:01 - 02:05:20:22

Trina Allen

That curriculum needs to be created within and created with the kid at a different level and created with a kid at the different level. And it created with a kid in a different level. And it needs to be individualized. And that is doable with time and space.

02:05:20:24 - 02:05:50:05

Erin Croyle

I want to stop right there so you listener can let those words resonate. Listening to your child is the most important thing you can do to combat ableism. I learned so much from this interview about inclusion, about ableism, about what we can do to effect change, and about myself. That's why this episo de needed a sequel. I didn't want to leave anything on the cutting room floor.

02:05:50:07 - 02:06:16:10

Erin Croyle

In part two, Trina breaks down how schools can create inclusive curriculum. The able As I am, we experience from other parents and how we can help shift mindsets and the equally important fight of inclusion outside of academics. You don't want to miss it, so be sure to share subscribed, like follow or whatever it is you need so you get a ping when this show drops.

02:06:16:12 - 02:06:23:13

Erin Croyle

This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

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เนื้อหาจัดทำโดย Erin Croyle เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก Erin Croyle หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal

Imagine being treated as a guest in your own school.

For many students, not only is that their reality - it's by design.

In part 1 of this 2 part episode, Erin Croyle and special education teacher Trina Allen break down what needs to be done to create meaningful inclusion in academics, throughout our school communities, and beyond.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Talia A. Lewis' Working Definiciton of Ableism.

How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done.

What is the Affordable Care Act?

National Center for Education Statistics releases various annual reports and as well as topical studies.

More on the Ithaca City School District.

Inclusion benefits EVERYone.

Learn more about the Individuals with Disabilities Education Act (IDEA).

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's partnership for People with Disabilities.

01:00:39:04 - 01:01:08:18

Erin Croyle

This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability can be. But we tackle the tough stuff too. Inclusion could be one of the most complex. As guest Trina Allen points out, students with disabilities are often treated as guests in their own schools. Trina should know.

01:01:08:20 - 01:01:28:22

Erin Croyle

She's a special education teacher who moved all the way across the country with her family to work at one of the few school districts she could find that is striving toward meaningful inclusion. Trina, thank you so much for joining me.

01:01:28:24 - 01:01:38:13

Erin Croyle

Champions for inclusion are real life superheroes, and superheroes typically have some great origin stories. So let's start with yours. How did you get to this place?

01:01:38:16 - 01:01:59:07

Trina Allen

Well, first off, it's an honor to be here. So thank you. And I've always worked with kids. I worked in group homes and transitional living programs, and I did hotline services and things like that. And it was it was what I intended to do. I tended to be a therapist and I went to school and got my bachelor's in psychology and was going to move on.

01:01:59:07 - 01:02:22:07

Trina Allen

And then the art therapy, I wanted to be an art therapist and the art therapy program I was assisting in was shut down. And it was for a group of students that had really intensive trauma and really needed that. Therapy is a heartbreaking thing, but they offered me at the school to work and the program for autistic students.

01:02:22:09 - 01:02:48:19

Trina Allen

And so I, I said, Yeah, sure. And within a month they offered me a teaching position and I was in no way prepared or qualified any fashion for that. And I jumped in right away and eventually got my master's in special education. And, and it was at the most secluded, the most restricted, most segregated placement for students who had been forcibly exited from the general public education.

01:02:48:19 - 01:03:20:16

Trina Allen

And I didn't know that I didn't know anything at the time. I didn't know anything about histories of disability and resistance and pressure for inclusion. And so I left there when I realized I couldn't. I was there for years. It was very painful to see students who could not get what they need and who needed so much. Their support needs were being routinely denied and I did my very best in making this space as loving as it possibly could within the context of extreme deprivation.

01:03:20:18 - 01:03:38:24

Trina Allen

It was terrible. And so I went to the district thinking that it would be better and I loved it, and it was still segregated and I did a lot of things to force that to change. As I understood more and more what my students needed and also listened to people listen to it. Disabled adults who were like, This is what needs to happen.

01:03:39:03 - 01:04:16:08

Trina Allen

And the best that I could do was harm reduction. I had a reverse inclusion program and I thought that by proving it could work and it did, that it would make the systemic inclusion of my students easier. Like, Look, the kids are already in, I already did it. We got it. Let me let's now make it institutionalized as opposed to like just this thing that we tagged ragtag together and there was literally no fat, no willingness, nothing, not even an ideological concern, no disabled people making any of the decisions.

01:04:16:10 - 01:04:40:06

Trina Allen

And I realized, okay, like I'm getting paid to segregate kids and I got to go. And so I we looked across the country and had like five states. We were thinking about an ethical city school district said, hey, inclusion. And then it's actually done for students with high support needs. And I was like, okay, this might be just the website.

01:04:40:08 - 01:05:06:15

Trina Allen

What happens if we move there? It isn't like that. And I have been glad to say that. Well, there's so, so, so much work to be done. It's a possibility. It's a possibility. Whereas everywhere I worked in the past I haven't been and that's where I am now. And I would say that my continued journey is really understanding my own neurodivergent and moving in the ways in which I want the world to look and listening to disabled voices.

01:05:06:15 - 01:05:08:20

Trina Allen

That's sort of where I'm.

01:05:08:22 - 01:05:20:06

Erin Croyle

Trying to tell me more about the search for inclusive school districts. When you were searching, how many were out there that even talked about having inclusive practices?

01:05:20:08 - 01:06:06:22

Trina Allen

Well, like all things that get co-opted sort of by general rhetoric and they become meaningless. And so the word inclusion, the word diversity equity starts out as a rallying cry for changing systemic oppression, and it gets whitewashed into something that's just up towards a system that looks a little bit nicer, if that makes sense. And so it was very hard to be honest when District said inclusion, and what they could have meant was they have a nice bench for kids to sit out together and not think their their curriculum and their program instruction and their general ethos and the way in which they provide space for folks with disabilities to lead to be their own

01:06:06:22 - 01:06:31:07

Trina Allen

heroes. Right. And I think that is almost nothing you can find on the website. So it was really difficult. I did look up several writers that I liked. I looked up several districts that were talking about doing cohort inclusion, and we just hoped, you know, we just really felt there was a lot of this looks like the best.

01:06:31:09 - 01:06:39:20

Trina Allen

And I don't know that it is. I mean, honestly, the district we chose looks like the best that I could find from that sort of research.

01:06:39:22 - 01:07:06:23

Erin Croyle

Meaningful inclusion is rare and doing it well is an investment in both time and resources. It's not something that our flawed system of public education is set up to handle. According to the National Center for Education Statistics, elementary and Secondary, public school revenues across the country total more than $950 billion during the 2020 and 2021 school year, which is the most recent data available.

01:07:07:00 - 01:07:51:18

Erin Croyle

The Federal government contributed 11%, 46% came from state funds and 44% of that 950 billion plus dollars came from local sources, most often property taxes. This set up often pits school districts who are dealing with teacher shortages, aging buildings and students with diverse needs against the communities they serve. And it's frustrating, especially because the Individuals with Disabilities Education Act, also known as ID a OR idea, which was enacted nearly 50 years ago, was supposed to provide funds for students with disabilities to have access to a free and appropriate public education, also known as faith.

01:07:51:20 - 01:08:10:04

Erin Croyle

But it has yet to be fully funded. I can't remember the exact number off the top of my head. It's it's obscenely low. So. Trina Well, I find that figure, which I'll also put in the show notes. Tell me, how is it even possible to do meaningful inclusion when you don't have the funds to support it?

01:08:10:06 - 01:08:52:00

Trina Allen

The idea comes out of honestly, radical liberatory work of disabled activist who pushed and pushed their who risked their lives and risked their their freedom to be able to create a space in which the children that they knew would come after them would benefit from it. And that is the history of resistance in this country. And I think the funding of that and the ways in which we as a culture gate keep those things is it's we don't want to sound like we're anti that, so we just don't fund it, right?

01:08:52:02 - 01:09:24:09

Trina Allen

It is by design. It's not an accidental not funding and I would say that goes for all education. I do not as a teacher and I love being a teacher and I will continue to work under these conditions regardless. But public education is bleeding. It is not it is not just inclusion. It is everything. It is the level of deep need of our students for connectivity, for learning, for presence, and for emotional stability in a world that's provide that.

01:09:24:09 - 01:10:01:01

Trina Allen

And I think when it comes to civically, then you already have an open wound and now you're trying to treat it with 25 different. There needs to be I mean, every kid needs an IEP, right? Every kid needs an IEP, right? There should be no special in education. That should absolutely be that. And and because it's not and because the system is set, the false ideas of what human ability and production should look like, we need to find specifically inclusion, what we should be funding universal design.

01:10:01:03 - 01:10:11:01

Trina Allen

We should be funding universal design for everybody. And folks with higher support needs, whatever that looks like in whatever area they might have, that should be centered.

01:10:11:03 - 01:10:31:15

Erin Croyle

Right on screen. A universal design for living and learning needs to be embedded in everything we do, not just our schools. Circling back to idea funding. When it was enacted in 1975, it was supposed to cover 40% of costs for students with IEPs. Currently it's 14.7%.

01:10:31:20 - 01:10:32:05

Trina Allen

That right?

01:10:32:08 - 01:10:56:03

Erin Croyle

Schools can and do build Medicaid for the services their higher needs students receive. For folks who might not know children with disabilities that are significant enough to require lifelong support and care can apply for and receive what are known as Medicaid waivers that support home and community based living rather than institutionalization. Now, on the surface, this sounds like the perfect workaround, but it too is problematic.

01:10:56:05 - 01:11:21:01

Erin Croyle

So much so that the details deserve a podcast of their own. The short of it as we know, health care in this country is not particularly stable. The Affordable Care Act removed lifetime caps on Medicaid, but there's no guarantee those caps won't be introduced. Based on our election cycles, some might think that these concerns are alarmist or unlikely, but unfortunately they are not.

01:11:21:03 - 01:11:43:00

Erin Croyle

A good example. My son was born in 2010, just not that long ago. It's the same year that the Affordable Care Act was enacted, and had it not been, my son would have likely been denied medical coverage because he was born with Down syndrome, which is considered to be a preexisting condition. In addition to that, my son's medical complexities are many.

01:11:43:05 - 01:12:07:20

Erin Croyle

He gets medications that are thousands of dollars a month, and thankfully, our insurance and his Medicaid pay for that. But thinking about lifetime caps and what he's going to need over a lifetime, I don't want to ever think about what would happen if there was a cap on his medical coverage. As far as Medicaid payback laws, I very much get the why behind them.

01:12:07:22 - 01:12:27:17

Erin Croyle

But Medicaid doesn't take into account the money lost by families hiring lawyers to assist with the copious amounts of paperwork it can take to set up accounts in trust for your child. Because it really is that complicated. And then there's the lost income that comes with caregiving, and that's not a small amount. Trust me, I know this from experience.

01:12:27:19 - 01:12:57:14

Erin Croyle

There is nothing simple about any of this. It's complex. And as you mentioned, it's systemic. It's not just our schools. It's across all parts of society. It's intermingled. So much so that we have to look at the bigger picture to truly understand it. And a lot of our school administrators don't really see that. And all of this is harming children and it's causing undue hardship for their families, and it's further marginalizing people with disabilities.

01:12:57:19 - 01:12:59:21

Erin Croyle

From day one.

01:12:59:23 - 01:13:32:24

Trina Allen

100%, 100%, there should be for the things that you need for survival. And I would say belonging is certainly part of that. But just for the material of life, shelter, food, medical, that should be provided because we exist and it should be provided to the level of need. Right. So it is absurd to think about worrying about how much your child will cost and whether you can afford to save them.

01:13:33:01 - 01:14:00:19

Trina Allen

That is not a position in an ethical country. That is not a position in an ethical society. It's not. And yet it is something that we think about all the time, or whether with their life will look like when we're gone. I ruminate on that, and part of that is because there aren't the safety nets and it's it's a hard place to be, but it's also a place to move from because in my opinion, this never there's never an end to a laboratory struggle.

01:14:00:19 - 01:14:01:22

Trina Allen

Right. So.

01:14:01:24 - 01:14:31:13

Erin Croyle

Right. And I think that especially with folks, aging disability is something that impacts everyone's life. One in four Americans have a disability that impacts their daily life. And when you think about that, that means either you or someone you love or someone close to you will have a disability in your lifetime. And so for me, that didn't happen until my son came into my life, not in a meaningful way.

01:14:31:13 - 01:14:52:16

Erin Croyle

And so I think that's part of why I find origin stories so interesting, because I don't even know who I was before that happened. I would probably be embarrassed if I talked to 30 year old me about what people with disabilities need because I probably knew nothing. And that's why I think it's important to have these conversations.

01:14:52:18 - 01:15:20:02

Trina Allen

But so I think there are several things with that. One, we live in a society that intentionally teaches us not that by segregating children right? If you notice, if you watch the segregation progression, disabled people are sort of sheltered and loved in this very paternal, rustic, patronizing way when they are small children. Everyone loves the headstart that has, again, pro headstart.

01:15:20:04 - 01:15:39:16

Trina Allen

But, you know, that shows the video of the little boy with his new gait trainer. And it's just this thing and makes people feel good and great. And and he's included in the classroom in kindergarten and then he gets to be in third grade and the curriculum starts to change. And we'll he has a really great teacher of fourth grade, so it works.

01:15:39:18 - 01:16:01:03

Trina Allen

And then sixth grade happens. And that switch that you just see, maybe it's that teacher that just doesn't understand. And then pretty soon in seventh grade, in eighth grade, and then by the beginning of high school, he's alone in a room. It's just like segregation. But by the time he's 25, where in society is this man with this intellectual disability?

01:16:01:05 - 01:16:32:05

Trina Allen

And how is he included? And the answer is, you don't even know him. He has been so significantly excluded. The kids will remember back to him in preschool, but would have no consideration of how they would work with him at a job. Right. Right. They're gone. And then at 50. At 60, it's institutionalization. And that is a boy.

01:16:32:07 - 01:16:59:14

Trina Allen

It's a boy. It is a society based on eugenics. The idea that there is only one way to look. That there is only one way to be. And there's only one way to produce for a society that's all about production, exploitation and consumerism. Right. I suggest that if you don't produce, then you are not productive. That means if you don't produce for that system, because we all know, folks, we all produce, right?

01:16:59:14 - 01:17:19:24

Trina Allen

We are. We are the production of ourselves. Right? But if you don't produce in a very particular capitalistic kind of way, you're excised from society and I don't think I knew that at 25. I don't think I knew that at 15. And why? Why didn't you? And I know that when we were young, it's because they were stolen from us.

01:17:20:04 - 01:17:38:23

Trina Allen

And that's why inclusion is the primary most important thing that we should be fighting for, even when public education is a wound that we're like, my gosh, we're there to get. It's not the thing that we can let go of. It's the thing we have to fight for, especially in these cases.

01:17:39:00 - 01:17:59:20

Erin Croyle

I mean, everything you just said, I, I hope that I can maintain with my own neurodiversity my focus on this question, because I want to say, you know, what you said about the example of the child and how everyone loves him when he's young. I see it in my own son. He was little kid, cute and everyone loved him.

01:17:59:22 - 01:18:24:05

Erin Croyle

And I slowly, as he got older, saw that change from stares with smiles to stares with, not smiles, not welcoming, stares at stores in places. And you know, the tics and the quirks and the stimming that he does not as welcomed and I think about that. I think about our generation and how we were never exposed to anyone different.

01:18:24:07 - 01:18:52:12

Erin Croyle

And even currently, I think that we like to think that inclusion is happening. But when you look at the statistics, right, in 2022, more than two thirds of students served under IDF with the following disabilities. They spent 80% or more of their time during the school day in gen ed classes. So speech and language impairments was 89% specific and learning disabilities 76% other health impairments 71%.

01:18:52:14 - 01:19:26:00

Erin Croyle

Development mental delays 70% visual impairments 69%. But when you look at more significant disabilities, deaf blindness, that percentage drops to 31%. Intellectual disabilities 21% and multiple disabilities 16%. So inclusion is happening in a positive way. But when we look at students who are more different than typical and I say in quotes, typical because what is typical? What is normal?

01:19:26:06 - 01:19:37:21

Erin Croyle

What is it? We don't even what those words are so ridiculous. And I want to acknowledge that. But people who are different from the conforming are less included.

01:19:37:23 - 01:20:08:18

Trina Allen

So is 100% related to support need and it's 100% related to an ideology as the education has an expected outcome. And both of those are problematic. And based on a white supremacist standard, when you specifically talk about that, it is so hard because in my previous classroom, the majority of my students were mostly disabled. And I think there is this really big misunderstanding.

01:20:08:19 - 01:20:58:14

Trina Allen

You know, the presume competence campaign is super important. And that is because when people have communication challenges, whether that be from a motor issue or whether that be from an intellectual disability issue or a multitude of those factors push together. It changes everything. And the ways in which my students with higher support needs and multiple modes of multiple disabilities really the way in which they have been treated, the way in which they have been infantilized, the way in which they have been segregated, the way in which they have been treated as a guest in their own school is honestly feel the 3000 mile move.

01:20:58:15 - 01:21:27:18

Trina Allen

I couldn't do it anymore. And it sounds terrible because it's like second area trauma is a real thing. And I acknowledge that I'm a human being and I love them. But it's not about me. Right? But at some point I'm getting paid for it to be about me and the look on a face of a child who a particular instance and this is one of those horror stories where it's not or to anybody who doesn't understand is a misunderstanding to most people, but a horror story to the person living it.

01:21:27:19 - 01:21:46:11

Trina Allen

And I had a student who used a AC and we were on campus high school, and he took his AC with them. They were going out to walk the track for just like a quick break before we had between reading and math. And he saw a ball because they were doing soccer or something that the class wasn't interrupting.

01:21:46:11 - 01:22:06:03

Trina Allen

You just grab the extra ball when he was playing with it. And the PE teacher on campus who should have known him, right. Should have known him, but didn't try to take the ball back and says that's not yours. And of course, he had set his AC down because he had run to go grab the ball, which he wanted to throw up and play with.

01:22:06:04 - 01:22:29:24

Trina Allen

Right. So he has AC on the ground and he grabbed it back. It was like not, you know, like I'm playing with it. You have your turn for sharing that, like with his sister. And she said some things to him. And luckily one of the students that it was in my reverse inclusion program, she ran over there and explained, his AC is right there.

01:22:30:00 - 01:23:00:04

Trina Allen

Hold on. And she said in front of him, What? He can't even talk. so this is like a now a very difficult situation for multiple reasons. My student, I have seen him cry once before. His knee came out of socket and he exploded in tears. That's the only time I've heard him cry. But all of a sudden and my door comes open and it's about 2 minutes before they're supposed to be back anyway.

01:23:00:06 - 01:23:25:20

Trina Allen

And the student is in tears hysterically. And I'm like, my God, his knee is okay. I'm in the cosmos. And luckily the reverse inclusion student had been there to tell me what had really happened because while these are amazing, he probably wouldn't have been able to locate like this teacher dehumanized me. And she said to him, according to my my student, you have your own balls in your own classroom.

01:23:25:20 - 01:23:28:18

Trina Allen

You can play with us. You don't need to play with arms.

01:23:28:20 - 01:23:30:15

Erin Croyle

Are you serious?

01:23:30:17 - 01:24:05:19

Trina Allen

Yo, I'm a lover most of the time. But you know, she needed to get some help. I was so mad. I was so livid. And of course, you know, my focus is on the students and also my other student who tried to navigate this. She herself has a disability, which is more on the like flash reactive aggression. And she kept it together instead of popping the teacher what she easily could have done and wanted to make that very clear, which I quite frankly understood.

01:24:05:19 - 01:24:25:07

Trina Allen

Yeah, but then it got him back to me because he was the primary concern. And of course I called his mom. I called everybody in the book, I called my supervisor, I called her directly. It was like, don't you ever, you know, that whole thing. And can I tell you all that happened? Nothing.

01:24:25:09 - 01:24:26:16

Erin Croyle

Of course.

01:24:26:18 - 01:24:46:02

Trina Allen

Nothing. Just misunderstanding. She didn't. She didn't know. And again, like, how do we live in a society where it's a I didn't know to treat you like a human being.

01:24:46:04 - 01:25:08:09

Erin Croyle

And this this is the problem I have when we talk about I work. Yeah, because the inclusion and that work, it doesn't include disabilities. Because if that was a student of color, it would be a completely different reaction. I mean, if the student had a disability and was a student of color, it wouldn't matter. It would still have happened.

01:25:08:09 - 01:25:18:22

Erin Croyle

What I'm saying is it was a non-disabled student of color. Let me be clear. Yes, I am. I don't feel like that was necessarily happen, especially the comment about you have your own balls.

01:25:18:24 - 01:25:52:17

Trina Allen

Right? Yes. The segregation piece. I think that when we look back on histories of resistance, right. We can look back on segregation and go, when was it ever good? Right? When was segregation ever for beneficial for the segregated party? And that is never there's something to be said about safe space. All right. That's real. That's different. That is led by and for people in an oppressed group making space for themselves.

01:25:52:17 - 01:26:29:15

Trina Allen

Right. That's different than a segregation and force by a societal hierarchy. You can see exactly what you're talking about is racial segregation was abhorrent. Disability embolism, segregation is abhorrent. And there is no place that we just allow it. Like in school, we don't allow direct segregation besides ability. We do it 100%. We do it 100%. In our intention and our focus, we segregate children all the time based on race and the ways in which it plays out in school.

01:26:29:21 - 01:26:57:11

Trina Allen

And I wish I could be more articulate about that. But it's the backdrop of everything. But it's not legally written down, right? It's not legally written down. It's legally written down for intellectually disabled students. We can give you percentages on when they are segregated and then it is absolutely, absolutely black disabled students are provided the absolute least inclusion.

01:26:57:13 - 01:27:20:17

Trina Allen

And that is based on the idea. The anti-Blackness and Abel ism is really the same thing is really the same thing. I really follow the working definition of Abel ism by T.L. Lewis, and if you ever look that up, it's quite beautiful and terrifying and terrible, but it's a good explanation of the linkages there, and we just accept it.

01:27:20:17 - 01:27:24:01

Trina Allen

And then they reframe the situation by saying it's in their best interest.

01:27:24:02 - 01:27:24:20

Erin Croyle

Exactly.

01:27:25:01 - 01:27:28:00

Trina Allen

And you're like, It is, but it's not.

01:27:28:02 - 01:28:11:23

Erin Croyle

Well, it's not. And also, I find that because of the generation of parents being raised in even more segregated areas, we question whether our instincts are right to fight, to have our child included, because our minds are still stuck in other areas. The working definition by Talia Lewis is that it wasn't. This was last updated and I'll put it in the show notes in 2020 to have January a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence and fitness.

01:28:12:00 - 01:28:44:08

Erin Croyle

These construct ideas are deeply rooted in eugenics, anti-blackness, misogyny, colonialism, imperialism and capitalism. This systemic oppression leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, health, wellness, and or their ability to satisfactorily, literally reproduce, excel and behave. You do not have to be disabled to experience ableism. Yes.

01:28:44:10 - 01:29:13:08

Trina Allen

It's about behavior. Do you behave and can you produce and being a teacher? Of course. Of like, do I want my students to behave? my God, yes. Can we be nice? Yes. That's different. Between being nice and producing an expected behavior. A lot of what we talk about to students we tell them to do and when we redirect them Head doesn't have a lot with being nice, right?

01:29:13:08 - 01:29:39:03

Trina Allen

Being kind. It has a lot to do with being in control. And we need to be focused more on what actual kindness and inclusion and reaching the kid, rooting out that hand right When we start focusing on some more of those values and making sure that all students have with it the support level that they need in different areas, that's universal as I move, Right?

01:29:39:06 - 01:29:47:20

Trina Allen

That's that's making it safe and welcoming, loving space for everyone involved. And we don't have that right now. We don't have that society.

01:29:47:22 - 01:30:08:22

Erin Croyle

We don't. And I hope we have time to get to this discussion about universal design for living and learning. And it might be a separate one. We'll see about time. What I do want to want to kind of focus on is what can we do now? What does inclusion look like? And I want to start with early, so and I'll share my own story.

01:30:08:22 - 01:30:39:05

Erin Croyle

You know, my son, again is just 1014 when we lived in the D.C. area, the school, our community school, I really wanted him to go to. So I advocated for that for kindergarten. And he was going in. For anyone who doesn't know, reverse inclusion is when you have a classroom pretty much designed for students with disabilities, but you bring in typical non-disabled peers and it's a great model because it should be inclusive, but it's just not.

01:30:39:05 - 01:30:41:19

Erin Croyle

Would you say that's right in your experience?

01:30:41:21 - 01:31:04:12

Trina Allen

Yes. So it is harm reduction. So for my last several years, they made up a class that was sort of no credit, no credit. And those students were either funneled in because they had a free period and they needed a place to get somewhere, or the students genuinely wanted to take my class. And there was 8 to 10 students per period and they would change every quarter.

01:31:04:18 - 01:31:24:04

Trina Allen

And at first it's very like school like, but then it becomes like family, like. And then I'm like, Dude, you haven't been in my class for two years. What are you doing? You didn't go, did you go to math class? Because like what? So it becomes very familial in a way that I wish school was their birthday get celebrated.

01:31:24:04 - 01:31:52:07

Trina Allen

They get to go on field trips with us. It becomes a benefit for them and a benefit for my students. While that family loving aspect was, I would say, the best part of my teaching career so far, it is cultivated by personality, right? And this particular set up in this particular moment, and it does not allow for any systemic change.

01:31:52:09 - 01:32:18:23

Trina Allen

In some ways it is limiting even more than not doing it at all. Its benefit, I would say absolutely to do it, but it sort of makes everyone around feel good about the scenario without actually changing it, right? So that when we went to dances and we went to the Disneyland trip, we did all this, my, my students had peers and knew them that we were cool.

01:32:18:24 - 01:32:36:13

Trina Allen

It was a fun classroom to be. And then it becomes that and it becomes like a sibling relationship and it's beautiful and it's gorgeous and it's not sustainable. And doesn't go anywhere because it only happens because I chose to do it. I'm not there at that school anymore and there's not a single to any of the segregated classrooms anymore.

01:32:36:15 - 01:32:48:04

Trina Allen

So it's not replicated, but it is harm reduction that you do temporarily while you work for systemic change. It's more segregated now than it was before I started.

01:32:48:06 - 01:33:13:18

Erin Croyle

Yeah, I think I think that's exactly what the problem is. We're kind of waiting for systemic change. And in my experience, those of us who are working towards that change are also parents or caregivers of kids with disabilities. And so we cannot fully dedicate ourselves because of the systems working against us as caregivers.

01:33:13:20 - 01:33:37:23

Trina Allen

And the fact that they don't know. Do you know how many times how many papers I have been in? I'm like, You're plainly lying. And as I got tenure, that's right. As I got tenured in my position became solid, I started getting I would say my classroom was lovely, right for us and lovely as a segregated table as design could be, right?

01:33:37:23 - 01:34:11:01

Trina Allen

Yeah. And I started getting the parents that were, quote, challenging, which means lawyered up because my high school, the high school, they realize nothing I say matters, but my lawyer says how it does. And that's that's real talk. That's real talk. And so that's what ended up happening. And as I started realizing, I learned I learned more about educational law through the lawyers of my parents than I ever did in school.

01:34:11:03 - 01:34:32:13

Trina Allen

And also from our own district lawyer who was also lied to. I mean, it's just why you have no idea. There's so much to talk about that that sidestepped it. But because of the fact that you have to fight and you have to have money and power behind you, like it's not just a matter of, we're tired.

01:34:32:13 - 01:35:09:24

Trina Allen

It's a matter of actual resources and knowledge. They're told that's not available, that's not true. You just did it for another parent who had a lawyer. It's like a literal literal. It could be IEP back to back and in one that one is unavailable. And in the next, if you did a cross section of race and class regarding support services and dis services like speech therapy and things like that, who get speech services within a multiply disabled classroom.

01:35:10:01 - 01:35:34:15

Trina Allen

And of course there's a separate problem of then over pathologizing black children for sure. I'm not talking about that. That's a separate issue that we can absolutely talk about. But the issue of black children who absolutely need speech language services, who have an actual speech language, disability and need an AC, and do they have that and what are their services like?

01:35:34:17 - 01:36:12:03

Trina Allen

Is it 30 minutes in a group group therapy once a week, twice a month? Because that's appropriate. It's not you know, it's not it's not appropriate at all. And yet, if you did that longitudinal study of the rates of support services based upon race and class, we would tell ourselves it is unbelievable. Parents who don't have power, money behind their name and social capital for whatever reason, cannot affect change in the same way the people who do can't.

01:36:12:05 - 01:36:16:12

Trina Allen

It doesn't matter if you fight day in, day out does matter.

01:36:16:14 - 01:36:24:20

Erin Croyle

And that actually circles back to what I've seen in my own experience and exactly where I want to go to next, which is.

01:36:24:22 - 01:36:25:11

Trina Allen

Given.

01:36:25:11 - 01:37:08:01

Erin Croyle

The flaws in the system. Right. What can we do right now? So I'm, for example, and not loaded yet, but I am a strong advocate who has a level of privilege and so I can take the time to read and understand how to advocate for my son and for other children with disabilities. So when he was leaving his reverse Inclusion preschool, which was the model that they used in the district that we lived in in Northern Virginia, flawed as it may be, until we can have universal pre-K in our public schools, it was pretty great considering, especially since the private preschools in the area were expensive and the ones that would actually help my son

01:37:08:01 - 01:37:18:01

Erin Croyle

and let him attend, their school ended up just putting him in a special classroom. They're like, Why am I paying for this? Yes, I'm not going to pay for this.

01:37:18:03 - 01:37:20:09

Trina Allen

Okay? You're not going to have I'm.

01:37:20:09 - 01:37:25:02

Erin Croyle

Not going to pay for what he's going to get regardless. I thought I would do better. So by.

01:37:25:07 - 01:37:25:20

Trina Allen

Right.

01:37:25:22 - 01:37:54:15

Erin Croyle

It's infuriating. So when we had our transition meeting to get him into kindergarten and I've written about this, but it's it's heartbreaking. I had to fight for my son to be included in a general education classroom in kindergarten. And he got in and he was the first kid with Down syndrome with that significant of a disability, if you will, to be in a general ed classroom at that school.

01:37:54:15 - 01:37:58:09

Erin Croyle

Yes. Is that the 2010?

01:37:58:11 - 01:38:26:22

Trina Allen

I know, I know. I know. It's so painful. You know, I remember and this is not exactly comparable, but it's similar. I had a student to one of the to my class that reversed include a kid who really wanted to take one of my students is mostly disabled with a cognitive disability and quadriplegia. She uses an eye gaze, a C right high tech and her math is obsolete.

01:38:27:00 - 01:38:58:12

Trina Allen

We can talk a lot about the misplacing of her in my class and also my decision to not focus on that because she wanted to stay. So I will focus on her decision. That kid wanted to take her to the math class as an inclusion day. Just just math one math class. And the math teacher was like, okay, okay, you know, like it.

01:38:58:14 - 01:39:16:08

Trina Allen

And they did. And of course, it went totally well and she had a blast and it was great. And, you know, everything was fine. And she showed off and she does very, very much that personality type. And it wasn't a fight to get her there. It wasn't like we were going to fight for her to be in the math class or anything.

01:39:16:10 - 01:39:39:02

Trina Allen

But it was one day and when I had broached the subject of it being more, it's about it already worked. But no. And so and pre-K, you can fight right in K you can fight, but by high school you need like five layers. It's not even a platform. You can quit. It's not even a platform to quit.

01:39:39:04 - 01:39:57:12

Erin Croyle

Well, in some cases too, though, Trina I share my personal experiences because I think it's important. I do talk to my son about sharing this and he's okay with it. And the question of that being okay is another question for a whole other podcast. You know, consent and what that means.

01:39:57:14 - 01:39:59:08

Trina Allen

Yeah, but I totally hear you.

01:39:59:10 - 01:40:21:04

Erin Croyle

But here's the problem that I am running into. It was a fight in elementary school to keep him in a speech therapist I still like. Yes, I only talk about PTSD. I still remember the calls I would get and I could feel at that school. The evidence, the way they were trying to stack up, how he didn't belong.

01:40:21:06 - 01:40:26:19

Trina Allen

They were making their case. They're making the case They're making their case that they're their service was to make the case that he doesn't.

01:40:26:19 - 01:41:01:16

Erin Croyle

Right. And then I have friends and also other parents and caregivers that I have helped and other people I know through our networks. Because when you have a kid with a disability, you just know other people and you get what you say time and time again. Ah, you know, the psychological testing of people using IQ to place kids in classrooms or multiple disabilities classrooms when we know that IQ testing and the stuff that they say is not IQ testing but really is is antiquated and is not a measure of our children's intellect, it.

01:41:01:16 - 01:41:22:23

Trina Allen

Is based on a system that is able at its base for them to fail. The whole point is the standard deviation of norm. Yeah, I know. It's literally I always say, I know you have to legally do this for my daughter's IEP, right? I know you have to legally do this, but I had no interest in talking.

01:41:23:00 - 01:41:49:03

Erin Croyle

I refused to allow the schools. I had my son tested by a doctor at Johns Hopkins, which is one of the best medical places in the country. And the number that was presented to me after that and the analysis that she gave me, this doctor, highly regarded, I just wanted to burn it because I knew that it was not a measure or a reflection of who my son was.

01:41:49:05 - 01:41:55:15

Erin Croyle

And in my conversation with her, I was I just thought, how are you a professional in this field?

01:41:55:17 - 01:42:16:20

Trina Allen

Thank you. And they really believe it. They believe being as I know your son, right? Yeah, I can. 300,000 times tell you that what he is and how he is and the ways in which he is and the ways in which he's going to become and the ways in which he is becoming. We'll never look on that test.

01:42:17:00 - 01:42:47:10

Trina Allen

And the reason why is because that test was not decided for him to become that test was excited for him to go away. Right. Was to backtrack. It was to push him out. He is amazing. And whatever that test said was not trying to capture that. Luckily, again, it's nice to work in the same school that your child will be assessed at.

01:42:47:12 - 01:43:03:23

Trina Allen

Right to say that. So I know the tester of my child who also has Down syndrome. I was like, girl, play with her, have a good time. But please understand that when you come back with not testable, I'm going to be like saying, Yeah, you did your job right?

01:43:04:00 - 01:43:30:05

Erin Croyle

And I anyone listening to this who is in a similar situation, I want you to hear Chinas words because to me, what you said about my son. Because to me, that's every every kid who was subjected to three, 3%. Right. And I want you to hold close to yourself and remember that students without disabilities are never subjected to the testing and the scrutiny and the microscope that our children are put under.

01:43:30:07 - 01:43:45:19

Erin Croyle

And it breaks my heart that we have to put them through this. And I refuse every single test possible because of that. He does not deserve to be analyzed like some experiment, and none of our kids do.

01:43:45:21 - 01:44:14:07

Trina Allen

No, they really don't. And there is nothing wrong with saying this is where he is when it comes to literacy. This is what he is doing. When it comes to social skills. It's fine to talk about what a kid is doing right. There's nothing wrong with that. I want to know those things. I want to know if when you asked him last time if he wanted peanut butter and jelly and he said yes, whether that actually reflected what he wanted, I want to meet his needs.

01:44:14:09 - 01:44:37:15

Trina Allen

Right. Right. That's different than assessing where he is on a scale that's meant to make him an outlier. It's just a very different thing. The purpose is different, right? Is the purpose to meet his need? No, this assessment shows us that this would work. And what? No, You know that that's not what you're doing. Not looking for something?

01:44:37:17 - 01:44:49:16

Erin Croyle

No. Some of the testing is to try to get a picture of who they are and what their needs are. For one thing that I've experienced in the district we're both in now, I don't think happens many other places.

01:44:49:18 - 01:44:50:00

Trina Allen

Yeah.

01:44:50:06 - 01:45:00:14

Erin Croyle

Is in honesty from educators that the stuff that they have to do and they have to show us is not a reflection of who he really is. And they recognize that.

01:45:00:19 - 01:45:01:01

Trina Allen

Yeah.

01:45:01:07 - 01:45:09:07

Erin Croyle

The other thing that I have experienced is I have had occupational therapist and speech language pathologists for those listening.

01:45:09:07 - 01:45:10:04

Trina Allen

So that's a.

01:45:10:06 - 01:45:39:04

Erin Croyle

Right. We all know the acronyms, but not everyone does. I have had my son's educators take the time to do the assessment as needed with the rules and the time constraints, but then take the time to give my child the adaptations, the time that he needs for those standardized tests and the information they come back even surprised me when they gave him what he needed to show what he knows.

01:45:39:06 - 01:45:47:01

Erin Croyle

He knows way more than even I as his biggest champion, realize. Yes, but that rarely happens.

01:45:47:03 - 01:46:18:09

Trina Allen

So that's why we're really lucky. And I'm going to say this like I've worked now in the field since 2005, so that makes me really old. So within that time, the discrepancies services provided it and the district that we're working in or working with or whatever is far, far better. So I will tell you, I had to for my daughter and I'm a teacher within the district in my previous district, the teacher within the district power, a lot of power to be honest.

01:46:18:12 - 01:46:47:05

Trina Allen

And within that framework I had to fight to get her a half an hour of speech and language a week, and then two additional sessions of groups I had to fight. It's not like I just got that. I went through the channels. Love you. I respect your report. I appreciate the time you put into it. I'm just going to go ahead and let you know that I looked at the recommendations and I'm going to request independent evaluation.

01:46:47:05 - 01:47:10:02

Trina Allen

And you had to fight and had to do that. You know, And she got it and she still didn't get it out. And I will say that's why I do believe it's possible. And so when we talk about systemic problems, I think it's really important to understand how bad it really is, because I don't think people understand how bad our culture really is in regards to able I and how deeply ableist and eugenic everything just based on eugenics.

01:47:10:04 - 01:47:26:22

Trina Allen

And that's really a dark landscape to go from. But where do we go moving forward? And I think this is one of those ways in which you disrupt. I have to follow the teaching, right? I mean, I got to do my test. I know how to do it. I can do it. You know, I'm going to make it fun, though.

01:47:26:22 - 01:47:48:06

Trina Allen

You know, any kid that I'm forced to subject to a standardized test is going to have a real good time with me. And I think that you can disrupt those ways by making the actual lived experience better. You can disrupt by what you're doing, saying no until you absolutely have to for this particular thing. Right. You can talk about how they're invalid measures.

01:47:48:06 - 01:48:06:03

Trina Allen

I think that's important. But I think more than anything it's about the ways in which you treat the people in front of you. Yeah, you're not going to work within the system and change it without having to follow the things you don't like. That's why I love being outside of the system, quite frankly, and I love being a disruptor in the community.

01:48:06:03 - 01:48:29:07

Trina Allen

I love being a protester or an activist. That's great. But I also need jobs. So and I think that those ways, like what you just talked about, the speech pathology, doing what they need to do, but then say, let me show you a list of everything he said. He knows this, this and this. Let me tell you a story about what he did.

01:48:29:09 - 01:48:59:20

Trina Allen

Let me show you a video, a picture about something he is proud of. Let me teach him how he can show you. I think the more that we can find in ways in which we interact with the individuals in front of us in a humanistic and loving and equal nonhierarchical way is one important and then two, as advocates, there is that superhero aspect of it's my job to fight, and that's my job to fight.

01:48:59:20 - 01:49:33:04

Trina Allen

Absolutely. As an ally, Yes. As a person with power. As a person of privilege. Yes. Yes. Yes. 100%. As a teacher, I am in power over you by design. I will absolutely fight for you. And the ways in which we can shift that focus because children don't always need to hear hero. They need to be the hero ways in which they can do that and the disruption of that, that teaching them that these systems are wrong as opposed to you are wrong.

01:49:33:06 - 01:49:42:11

Trina Allen

Telling them outright took us all the time. I don't believe in this. Yeah I think that that matters.

01:49:42:13 - 01:50:01:21

Erin Croyle

One, I think too I mean, there's so much here, Trina, even as parents, because we've been raised in such a segregated, ablest world, even as parents, even as someone who loves someone and thinks of our children with disabilities as the best thing in the world and thinks that they think.

01:50:01:23 - 01:50:02:20

Trina Allen

Yes.

01:50:02:22 - 01:50:23:08

Erin Croyle

The best of them, I sometimes underestimate my son. And I have to remind myself, right, so to speak, to him like a 14 year old, because his expressive language is not there. But my gosh, his receptive language is is there. Yes. And he gets it and they get it and they want to know.

01:50:23:10 - 01:50:24:22

Trina Allen

brilliant. Yeah. Yes.

01:50:24:24 - 01:50:46:02

Erin Croyle

You're working for them and you're on their side and they want to be taught things. I mean, I see people. Yeah. Because my son doesn't speak. And by the way, I talk about my son as an example, but I'm speaking for all kids. I do this podcast for every one. I want to change for everyone, but I'm not going to give examples of other kids because it's not okay.

01:50:46:02 - 01:50:58:23

Erin Croyle

Yeah. So I think that's so important to point out to folks, This is not about me making the world better, so my son gets what he needs. This is about using the examples so we can all work together to make the world a better period.

01:50:59:00 - 01:51:03:19

Trina Allen

And that's the only way it's going to be better for your son. Our liberation. We're tied together. Yeah. Yeah.

01:51:03:21 - 01:51:24:08

Erin Croyle

Exactly. We talk around our kids like they're not there because they don't speak as much or they communicate differently. And I think that that is one of the main many, many, many reasons inclusion is so important because they just need to know that they're part of it. They're part of the conversation representation being at the table. Yeah, they get that.

01:51:24:10 - 01:51:50:00

Trina Allen

I totally agree. It's so hard too, because I think once we start letting go of this idea of what a person should look like should be like, I get upset on this age appropriateness sometimes when people say, I'm going to talk to him like he's 14. And then when you're talking about someone who has really high support needs right, everyone is like, well, that doesn't work.

01:51:50:04 - 01:52:11:08

Trina Allen

And it's like, No, wait, I'm going to talk to him, who he is, where he is. I'm going to have joint attention with him. I'm going to figure out the ways in which he communicates and I'm going to mirror that back to him and I'm going to take his lead on that. And I'm going to presume competence. And if I don't know if he understands a concept or not, I'm an error on the side.

01:52:11:08 - 01:52:39:09

Trina Allen

He does. That's the presumption of competence. And if my conversation doesn't benefit in any way, I'm going to continue to figure out what his responses are or his initiations of conversation are so that wherever he's at and whatever he wants to talk about, that's centered because the initial assumption by most people is it doesn't pertain to him because we've segregated.

01:52:39:11 - 01:53:11:11

Trina Allen

So he's not even part of the conversation. And then the first part is placement. Like, we'll let you sit at our table, we'll let you yeah, we'll let you. And then it's going to be like, Well, yeah, and I guess you'll need a few books to sit on so you can reach the, you know, whatever until we understand that that table has been built to deny him access, that he has to be the one to build his seat at that table that fits him, build his seat at that table, that helps support everyone else around him.

01:53:11:13 - 01:53:36:23

Trina Allen

That's where it's at. It's not just placement. And it's not just presumption of competence. It's all of those things together with and understanding that he is belonging. That's so hard to produce when like your hands are tied and the tools or whatever, but the least that's the least we can do is the least we can do is listen.

01:53:37:00 - 01:53:38:24

Trina Allen

Right. Listen to him.

01:53:39:01 - 01:53:43:00

Erin Croyle

Yeah. And take the time to listen. Because you.

01:53:43:00 - 01:53:44:23

Trina Allen

Have forgotten. God.

01:53:45:00 - 01:53:58:21

Erin Croyle

You have to listen differently and just use a different set of skills because it's it's a different conversation. You have to connect with a lot of people before you can learn how to listen to them.

01:53:58:23 - 01:54:22:20

Trina Allen

Yes, I totally agree. Everything is so based on speaking like the verbal ability. Right. That's what we think. That's what we believe. But realistically, we do so much other language and communication. So much of the ways in which we interact are not anything about that. But we forget that we're we're talking to disabled folks who are not speaking, right.

01:54:22:22 - 01:54:45:17

Trina Allen

It's like we all of a sudden assume that the words aren't there, that the expressively isn't there. It's like we can't have this interaction. And you're like, what? Like 90% of what we do isn't even that big, so why would it matter so much? But it does. And so that deep listening and that deep understanding and trial and error try five different language systems.

01:54:45:17 - 01:54:50:06

Trina Allen

And if they don't work you trying. But it's not giving up.

01:54:50:08 - 01:55:10:05

Erin Croyle

It's not. And I think too, you know, so often we say behavior as communication and yeah it is except that what is behind the communication and what else is going on. Right. When we think about what our kids are up against and the able is that they experience I think in a good example is in the medical community.

01:55:10:11 - 01:55:10:20

Trina Allen

Yeah.

01:55:10:20 - 01:55:17:20

Erin Croyle

You know just finding an eye doctor. Right. That will actually take the time.

01:55:17:22 - 01:55:18:06

Trina Allen

yeah.

01:55:18:07 - 01:55:40:19

Erin Croyle

They could be related to the fact that even though they have glasses, maybe their eye doctor really wasn't doing due diligence to treat them right. Or the fact that like again, my son has had hearing loss, but it went undetected because the first audiologist was ablest and said it's okay if you could hear out of one ear and was willing to just let you.

01:55:40:21 - 01:55:41:03

Trina Allen

Right.

01:55:41:05 - 01:55:53:10

Erin Croyle

And then the school before he even had a hearing aids, the school back in Northern Virginia claimed that they didn't use FM systems, which I don't know, a school that would not use those extra things.

01:55:53:10 - 01:56:16:13

Trina Allen

They didn't have them, they hadn't done it yet. Means they can't they Right. I just I every single one of those I can say Yes. My daughter, I wasn't there. Thank God. But my partner took my daughter to an audiologist who refused to speak to her. But totally talked to my partner. And Erin was like, you know, you could ask her.

01:56:16:17 - 01:56:35:10

Trina Allen

At first it was like, I'm going to gently lead you to this. Clearly you've been raised in the segregated society. And then it was like, I don't know, ask her, you know, like, I don't know. Ask her. I don't know. Ask her. I don't know. Ask her. And the fact that you couldn't take that, you know, like is just painful in itself.

01:56:35:12 - 01:56:59:07

Trina Allen

And then when to get real, like when are they doing it? Okay, well, this is more than just this is more than just ignoring her. He's being made at this point. He doesn't want to he doesn't want to start knowing when those things happen and then knowing if that audiology report was any good. And now medical decisions are being made off of whether she has surgery or not.

01:56:59:09 - 01:57:07:21

Trina Allen

Right. Then we could talk about what all the ablest things in regards to that, because she has to be in a hospital and have surgery, you know, all the all the things. Right.

01:57:07:23 - 01:57:09:24

Erin Croyle

But it is all related.

01:57:10:01 - 01:57:33:21

Trina Allen

It's all related. It's all related and every single one of those things that you just mentioned is same. And it cannot be recapitulated over and over and over and over and over again unless that's the way it's meant to be. Right? We couldn't live in a racist society where all these things keep happening, keep happening, keep happening unless that was by design, Able is and doesn't accidentally happen because of bad players.

01:57:33:23 - 01:57:50:11

Trina Allen

There are bad players, there are bad apples. There are many people we can talk about that. That's a very small percentage of what is actually happening, right? It's by design. That audiology report is really expensive if he gets what he needs. Yeah.

01:57:50:13 - 01:58:02:05

Erin Croyle

It is. It is. But getting back getting back to inclusion in schools, I think it's important to note that, yeah, you know, behaviors, communication, but we really have to push.

01:58:02:07 - 01:58:02:21

Trina Allen

Out to.

01:58:02:21 - 01:58:08:15

Erin Croyle

Understand the root of the behavior before we just assume that it is something. Yes.

01:58:08:15 - 01:58:39:22

Trina Allen

Thank you, behaviorists. And again, my early career I believed in ABA because I thought that was the standard. That's what I was told. I got out and then after about a few dozen, I better try harder. I learned very quickly that wanting that wanting someone's behavior to tell me what was in their soul, to tell me what support they needed is so wrong.

01:58:39:24 - 01:59:06:17

Trina Allen

And it would be so wrong to suggest that what I do is a direct relation of who I am right with all these constraints around me. And I think that finding out the why and finding out the need, if you look at a kid that has a behavior that you might not want to see, like fighting or something that is challenging to deal with, and you're only looking at it as a way to get them to stop biting.

01:59:06:17 - 01:59:28:07

Trina Allen

You are truly, truly, truly misguided. So the first step is trying to figure out what they're trying to tell you or whatever the communication piece that more than anything is why? Like what you're talking about, why is there that need in the first place? Is this environment super overstimulated or is it they're lonely or is it like that real human need?

01:59:28:07 - 01:59:41:21

Trina Allen

And the assumption, though, is that both, especially folks with intellectual disabilities, folks, don't give them access to human emotion. It's not just presumption of competence, it's presumption of humanity.

01:59:41:23 - 02:00:07:20

Erin Croyle

Yeah, I want to take this part of the conversation and go back to grade levels and inclusion because COVID aside, the pandemic and how that was for students with disabilities, I feel like inclusion is far easier in grade school. What I notice in my own experience and what I've heard from some of their peers is that when you enter middle school, it changes.

02:00:07:20 - 02:00:37:16

Erin Croyle

And that's what I saw with my own son in that you don't have one teacher. The classrooms are different. It's harder. And between that, my son experienced anxiety so extreme this past school year that he refused to go to classrooms and we were having him do General Ed. And what's interesting in the school district that Trina and I are both in is you can have your child participate in Gen Z if you advocate with the IEP to do that.

02:00:37:18 - 02:01:01:21

Erin Croyle

But there is one school that has something that's called a community based classroom, and it is it is more of like a cohort model that, you know, you have students with more significant needs who have to basically say, we're going to go off the standard diploma track to go into this classroom, which is a whole other can of worms that is just ablest and gut wrenching.

02:01:01:21 - 02:01:02:16

Erin Croyle

But anyway.

02:01:02:17 - 02:01:06:14

Trina Allen

Yeah, it's illegal. It's a legal play. That sucks.

02:01:06:16 - 02:01:12:17

Erin Croyle

It sucks, right? Because it's basically saying that I'm going to lower my expectations because I see my child's needs now.

02:01:12:18 - 02:01:30:01

Trina Allen

Yeah. It basically suggests that folks who with an intellectual disability don't deserve a diploma, Right? Which means it means that a diploma is based on a very specific ideology of understanding and cognition, and that is inherently able.

02:01:30:03 - 02:01:31:02

Erin Croyle

Yes.

02:01:31:04 - 02:01:33:22

Trina Allen

And to sign that document, I.

02:01:33:24 - 02:02:06:12

Erin Croyle

Know it's hard and it's I get it makes me cry every time, because the systems force us as parents to take opportunities away from our children, to give them what they need in the moment. Yes, I think so many people go through this. I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track.

02:02:06:12 - 02:02:11:22

Erin Croyle

Yeah, I tried to help my son since he was two.

02:02:11:22 - 02:02:12:24

Trina Allen

With yeah, reading.

02:02:12:24 - 02:02:20:04

Erin Croyle

Programs, all sorts of things. The thing is, there's no cookie cutter like a kid with Down's syndrome is one kid with Down's syndrome.

02:02:20:06 - 02:02:21:06

Trina Allen

Thank you. Right.

02:02:21:12 - 02:02:45:23

Erin Croyle

Who is one kid with autism? Is CP. Like, he's. He's brilliant and he wants to learn. So what I experience this year is not only did he have extreme anxiety, not only do I know that probably a lot of his non-disabled peers in Gen Ed stared at him, and I know that some kids are nice, but I do know that other kids are not.

02:02:45:23 - 02:03:22:05

Erin Croyle

And Arlo has a 1 to 1, so at least I know that he was protected. But Arlo also is a human being who wants to feel successful and proud of himself. And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is, I find myself blaming myself when I think that our schools, once we get to a certain level, it's not parents failing, but it's our schools not offering enough options for kids with more significant needs.

02:03:22:05 - 02:03:38:13

Erin Croyle

Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that they reach a certain age and there's no choice anymore. There's no other option anymore.

02:03:38:15 - 02:04:06:00

Trina Allen

Right. Okay. So first off, I specifically in this situation, I want to commend you for doing the deep listening that your child with. It is so important that we do that. So while we're on the fight for inclusion, it cannot be on the back of our individual child. And listening to what he needs in the moment, listening to him is the biggest fight of Abel's that you will ever do with him.

02:04:06:04 - 02:04:35:02

Trina Allen

He told you what he needed. You listened so good. Good for you. That is what a mom does. And the issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things, that math class needs to be structured. These are the standards and every single kid in it is at a different place and it needs to be supported in that way.

02:04:35:04 - 02:04:56:24

Trina Allen

Do I think it can be done? my God, Math is like the easiest. You know, it becomes a more complicated in like history and English, but it doesn't have to be if the design is universal. Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son.

02:04:57:01 - 02:05:20:22

Trina Allen

That curriculum needs to be created within and created with the kid at a different level and created with a kid at the different level. And it created with a kid in a different level. And it needs to be individualized. And that is doable with time and space.

02:05:20:24 - 02:05:50:05

Erin Croyle

I want to stop right there so you listener can let those words resonate. Listening to your child is the most important thing you can do to combat ableism. I learned so much from this interview about inclusion, about ableism, about what we can do to effect change, and about myself. That's why this episo de needed a sequel. I didn't want to leave anything on the cutting room floor.

02:05:50:07 - 02:06:16:10

Erin Croyle

In part two, Trina breaks down how schools can create inclusive curriculum. The able As I am, we experience from other parents and how we can help shift mindsets and the equally important fight of inclusion outside of academics. You don't want to miss it, so be sure to share subscribed, like follow or whatever it is you need so you get a ping when this show drops.

02:06:16:12 - 02:06:23:13

Erin Croyle

This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

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