welcome to inclusive occupations, sharing stories of not just being invited to the party but dancing. I'm your host Savitha Sundar, I'm a school based occupational therapist. This podcast is a space for OTs and others who work with children and youth in education to be informed, inspired, and empowered to create an inclusive community for the students they serve.
Welcome fellow OTs and educators to season three of inclusive occupations. Our first guest of the season is Diana pastoral Carson, a seasoned educator, a passionate advocate for inclusion and a fellow podcaster. I first listened to Diana's interview on the think inclusive podcast, got intrigued, Googled her up and fell in love with her work. I then listened to every single episode of our podcast, took her course online and decided that she must be invited to inclusive occupations. I am so thrilled to share her with you all as our special guest
Diana, thank you so much for being here in our podcast today, taking the time. I would like for you to introduce yourself about what you do to our audience and share a favorite quote that has been a guidepost in your life.
Hi, Savita, thank you so much for having me. So my name is Diana Pastora Carson or the Deeana Pastora Carson depending on your code, we can switch codes anytime. I am an educator of 30 years, elementary educator, I also teach co teach a disability studies course at San Diego State University. I am disability rights advocate. I'm a consultant and speaker, keynote speaker specializing on inclusion and diversity as it relates to disability. I really credit my advocacy Oh, and I forgot to say I'm also a podcaster. And an author. I've written two books. One is beyond awareness, bringing disability into diversity work in K 12 schools and communities, as well as a children's book called Ed Roberts champion of disability rights. And, um, my podcast is called beyond awareness, disability awareness that matters. And what I was going to say is that I really credit my passion for this work, to my experience with my brother, co advocating with him to have he actually was institutionalized for 15 years of his life total. And, you know, before that he was in a segregated classroom. He was one of the children who finally got to go to school in 1975, when pl 94 142 was passed, or idea was passed. And so, you know, he got to go to school, but and he had a classroom to go to, but it was behind this big metal fence, you know, and I didn't get to play with him on the playground, I didn't get to invite him to my playground or play on his playground and his friends, my friends didn't get to meet and it was just a very confusing time for me as his sister to see that finally, my brother got to go to school, but he didn't get to belong. He didn't actually get to have a place in our school community, except behind that big metal fence or at least it looked like a big metal fence to me. And, you know, then when he didn't fit in there, even in the special education classroom that was designed supposedly to meet his needs. And he was essentially kicked out of that school and a new school was developed for students on the autism spectrum, or autistic students at that time. And he, he went to this non public school, where there was a lot of aversive conditioning that took place such as squirting students in the face with water bottles, squirting them in the mouth with vinegar. Timeout rooms, had down procedures where they were restrained for extended periods of time. It was not a quality educational experience. It was a horrific experience for my brother, and when he was 17 and weighed 200 pounds Isn't was six feet tall, it took five people to hold him down to restrain him. And, you know, not that they should have been, they shouldn't have been restraining him to begin with. And he had no reliable means of communication and nobody working on helping him to communicate. He had, you know, his body, autism wasn't seen as a movement difference back then. And so whenever his body needed to move, it was seen as defiance, and he was punished for it. And so, um, you know, after 10 years at the school, it came to a point where he, my parents were told they were given an ultimatum that if they did not medicate Joaquin, my brother, and by the way, while king gives me his consent to share our story, and that's really important, because, you know, I want everybody to see my brother with the dignity and respect that he deserves.
Yeah, and I want to extend my thanks to Joaquin for using his life as a big stepping stone for all of us as a society, yes, to towards greater awareness and a better world. Thank you.
I'm sure he'll appreciate that when he listens to this. So my parents had this ultimatum either put him on psychotropic medications, or he's going to be kicked out. And the only other place he could go, if he were kicked out would be to a developmental center as which is a euphemism for a state hospital or an institution to two hours away from our family's community. And so my parents resisted and resisted, because my mother, you know, last time Joaquin had been on medications when he was little, he got in her mind her Spanish, big Spanish accent, he was too skinny. You know, she didn't want him to lose so much weight and be unhealthy and be a zombie. So they resisted. And it got to a point where they were given that ultimatum, you either put them on psychotropic medications, or he will not have a school to go to. And so they did. And within several days, Fokin who loves to ride bikes, loves to run, swim, very active, very fun loving. He was on the floor, having convulsions, he started having seizures. And when my parents who didn't have Facebook and they didn't have quick access to medical professionals who could help them with titrating them off of those medications. He was on three different men, he was unhealed all Thorazine mellaril very, you know, potent medications. And they tied tried to titrate him quickly because he was having seizures. He they never seen their son have seizures. And when they did that, he started he became psychotic. He was so not himself, and very destructive. And I remember the day that my father, I came home from high school, and my mother was on the sofa crying. And my father was straddled over Joaquin. And he was dripping sweat. He was restraining Joaquin hands and legs. And he was dripping sweat from his face down to Joaquin's already dripping sweat body. And my dad was crying. And I never seen my dad cry. And my dad said to me, Diana, I need you to go into the garage, and I need you to go get a rope. And I was horrified yet at the same time I didn't know which was worse seeing my daddy cry and seeing my brother in this condition or giving my dad a break with the rope. And so my dad I went and got a rope, one that wouldn't hurt Joaquin too much. And one that wouldn't be the you know, that would withstand his restraint, his his strength. And I brought it to my dad and he proceeded to tie Watkins hands and his feet together. So he could get a break. And so he could call Joaquin social worker. And my brother my father was told the gentleman on the other end of the phone cried with my father. And he said Mr. Carson, I'm so sorry, but I have to call Child Protective Services. And you have to take your son to a state hospital first thing in the morning. And so that's what our family did in the next morning. We all Joaquin loves going for rides in any kind of vehicle. So we drove two hours to Orange County, we're in San Diego, and we drove to Orange County, which is about two hours away on a good day and left Joaquin at this institution and Joaquin spent 15 years of his life at that institution. 15 years he twice he was They're once for eight years. And then the other time for seven years, and both times were a result of psychotropic medications, anti psychotic meds. And we, we went to see him every weekend, we drive two hours there, two hours back, two to three hours there and two to three hours back. And we'd spend the entire day with him every weekend, all of those 15 years, except for one weekend when I had the flu. And my mother was ill, and they couldn't make it. So we were always committed to Joaquin always wanted him to come back home. But it was there was so much about the environments that he was placed in, that did not create did not meet his access needs. And at the end of that 15 year, well, the last three years of his 15 years in the institution, we decided we were going to get him out. And we ended up having to go to court with our social services system, which is in California, it's the regional center system. And after one and a half years, we lost, they said he was a danger to himself and others. And we went back again. And we then one. And so Joaquin now lives as my next door neighbor. We have eight out eight acres in a rural area of San Diego, and we converted a barn into a really cool apartment for Joaquin. And it meets his access needs. And he has 24 hour staff and he has good days, and he has really bad days, too. You know, we're still working on the communication. We're still working on. musi... in music therapy, where he's working on being in control of his body, you know, acknowledging his body's limits and, and just healing he has a lot of healing to do. Yesterday, he turned 53 years old.
Wow. So many years of trauma.
Yes. Yes. And he gets to experience at all with people around him who love Him and embrace Him. And, and he embraces us to you know, he's forgiven us for not knowing. So that's me in a nutshell. And that leads me to sorry, I get emotional when I talk about this. Don't worry about me, I'm okay. Oh,
no, every since I heard your story before, but I wanted my listeners to hear from you firsthand in this particular podcast. And I think this is a very powerful story. And it's going to appeal to all of us educators. I want to say that me in my past life has had kids with extremely challenging, extremely challenging behaviors that we didn't know how to how to, you know, understand and, and handle in that educational environment. And we have talked among ourselves, oh, this kid needs to be on medication. Right? I'm not saying that medication is not going to help anyone at all. Right? There's so much more than that. And we have all. I mean, this is a very powerful story, Diana, thank you. Thank you for sharing this with us.
You're welcome. So I just want to complete that introduction with your you requested that I share a quote a favorite quote. And so this applies not only to Joaquin, and me, but also to what you just spoke of, and your listeners as well. And it's Maya Angelou, who said, Do the best you can until you know better. And then when you know better, do better.
I love that too. I love that quote. And I think we all have a responsibility to pursue knowing how to do better. Yeah, being complacent that we know it. All right.
Exactly. Yeah. Yeah. Yeah. It's not just about you. It's not just about, you know, being woowoo. And, you know, saying it, it's about the effect the impact that you're going to have on so many students, if you do that. Yes,
yes. So, Diana, how would you explain authentic inclusion to our listeners? Now you have experienced the whole gamut of being completely Segregated, your brother being completely segregated to now being included in his community. So if you were to describe authentic inclusion, how would you describe it?
Yeah. So when I think of authentic inclusion, it's when inclusivity is not an afterthought. You know, when Joaquin was included in School when he finally had the right to public education in the quote unquote, least restrictive environment, it was an afterthought. We already had this educational system in place, we already had lesson plans. You know, some teachers had their lesson plans laminated for 20 years and never changed. You know, they were inflexible. This is what we teach. This is how we teach it right? Authentic inclusion is when it's not an afterthought, or a way to retroactively fit people into our, our already created environments and systems. Authentic inclusion is when we truly value diverse voices, and diverse experiences, diverse ways of thinking and being and moving and talking in the world. And we embrace everyone's access needs. Once we hear those voices, once we observe those, the way people move, the way people feel a sense of belonging, we embrace everyone's access needs from the beginning. And, you know, you can have, you can have access without inclusion, but you can't have inclusion without access. And I think you, you actually took my my course. And you describe to me what I had said. That's really good. So, so you share what you got out of that.
Definitely. So I have taken everybody listening to this, I have taken Diana's course, which I think is a steal. It's such a powerful course. And she has it in her website. And I listened to the section and which really stood out to me how she talks about access and inclusion, and you talk about it being like twins, they go hand in hand, right, and you can have access but not inclusion, and you share this example of a bank having a wheelchair ramp. And without the end people can get into can access getting into the bank. But without an inclusive mindset. People will not think about bringing the services down to their level, when the bench has been the teller counters are way up high there. And without an inclusive mindset. The tailors will not be catering to the needs of those individuals in a wheelchair. So you can have access, but that nests that does not necessarily become inclusive.
Yeah. And it's not Yes, that's good.
That was your work. And I was just going, I was just going to extrapolate from that and apply to our classrooms, right, we have oh, he needs access to general education classroom, and we talk about having our students in general education classroom for so and so periods without actually making sure that they feel they belong, and that they have a purpose in that place. Right. So that is having access, but not that inclusivity where the peers have no knowledge on how to make those relationships and friendships with kids with communication challenges, not everybody understands their, their AACs. So that is, I think, such an important concept for us to understand.
So yes, exactly. And teachers, the educators we model that inclusive mindset, if we proceed, if we have a student who's, quote, unquote, gotten access to our classroom, they're supposedly being included, but yet, we perceive it as a drain on our resources, if we feel that that child does an imposition, now, you know, the educational, I mean, the behavioral dysregulation that may occur and having to, to stop the, the lesson in order to provide access for all the students. You know, we're impatient. And not only that, we are stressed out, because we've got these tests coming up these standardized tests, and we have to get these children ready. Because if our standardized test, don't compare, don't, you know, favorably to the rest of the school standardized test results, then we're going to look bad, we're going to look like we're not a good teacher. We're not doing our job. And so we have, not only we're, we're stressed out, and we're we become impatient. We take that out on our students and our non disabled students pick up on that. Right. And so they also are impatient with their friends who experience life in a different way. And so it's really important that we understand that part of that inclusivity comes by way of our attitudes, when we become aware of ableism. And we become anti, like purposefully in a committed way, reflective of where we are being ableist, or discriminatory towards our students who have disabilities, and learning to be gracious with ourselves, as educators, and with our students who have now gained access to our general education, classroom and curriculum, and with the rest of the class as well, because you don't have to have a diagnosed disability to need a more inclusive model in order to have a better educational experience.
Yeah, I love this. Diana, when you talk about, you don't have to have a disability to have that inclusive mindset. But I feel like including individuals with those striking differences, those which are technically quote unquote, challenging behaviors or challenging inclusion initiatives. When we do that we're actually strengthening those parts of our our muscles, I would say that those parts of our brain to start including all right, include the ones on the edges, then we probably can include the ones who are closer to the center. Yeah, yeah, I think I think you make a really good point there. Yeah. So that actually segues into our next question. Now, schools have traditionally separated those who do not act and learn like the majority, right, we have, we have come far in including individuals with disabilities in the past few decades, yet, we have a long way to go. Now in the serve in the in the in the name of supports and services, you know, we have always justified having students with disabilities in segregated Class mode, he needs all the therapy, he needs, all the services and supports, she needs to have a place to, you know, get extra help, whatever. So we have all these reasons. But then, the segregation has happened to a point where they miss out on being part of everyday societal occupations, right in the names of services. So the idea of least restrictive environment is also changing as we work on redefining our systems. What was least restrictive environment, say, even five years ago, is retaught off right now is this really least, you know, they bringing somebody into the school community was considered least restrictive. Now we're talking about bringing students with disabilities into the same classroom, with their peers without disabilities. Any thoughts on that?
There's a lot in that. So you know, I do, I do feel like they're, the thing is our default setting, within our system, our current educational system is pull out, you know, we're gonna, and not just pull out, but exclusion to begin with segregated, siloed special education classrooms for one as one of the least restrictive environment options. And then we have pullout. Now, I do believe that, you know, it shouldn't be our default setting, it should be our default setting that everybody is included in general education. And when a certain need arises, for a particular reason. It's for that because that student is actually what that student needs in order to grow, that maybe there is some pull out, and maybe there's some inclusive pull out where they're with their non disabled peers as they're working on speech therapy, or their occupational therapy, or whatever the adaptive physical education,
and those therapies can be so much more meaningful when it's actually implemented with their peers.
Yes, absolutely. Absolutely. And, you know, I certainly do hope that our understanding of least restrictive environment is changing. Unfortunately, in some school systems, we still see antiquated views of what is possible through inclusive classrooms and schools. We've done such a disservice to so many students for decades in how we understand or don't have vision for what is actually possible for students. And, you know, if we believe that all students belong Long and we are willing to transform our completely transform our, our educational systems and environments, then we can create systems and environments that do work for all students. And then we'd have less restrictive, hence more inclusive settings for students who think and move differently. But how we judge what is least restrictive, is based on assessments that only measure one part of a child's abilities, and often measure them incorrectly, because they're biased assessments, or because the child has no way of reliably expressing or communicating what it is that they are able to understand or do. And we also base, that least restrictive environment on levels of performance when compared to students in less flexible settings. So we we say, well, they can do that in a general education, setting the way that their peers do it in a general education setting, which happens to be very inflexible in nature. But if we, if we totally changed how classrooms exist, and how they look and how they're designed, and they were more flexible, then that child probably could perform well on those assessments. So, you know, so often at the administrative level, we have very little commitment, or very little will to make systems change toward inclusive environments and attitudes. And that completely dictates what least restrictive environment means. And it really affects students.
Yeah. Yeah, that's so true. We are working in very antiquated systems. And it's going to take time, and hopefully, with all the sharing that you do, and I do, we can accelerate the process, I
hope. Yes. Let's keep doing this.
Keep doing it. Yes. So our audience here are primarily educators, school based OTs and other related service providers. And we see a variety of students on the disability spectrum. And including all in Gen Ed may sound daunting to many.
You have been a teacher for 30 years, and how did you see inclusion happening over the years? And what are the challenges that you faced personally, as you tried to make shifts in your school community? And just asking this question, because I feel I know, we kind of looked at it in a broader sense, but just to kind of learn some, you know, practical steps or challenges and, and how you navigated that, I think, would be helpful, like what has been effective in making those shifts for students, especially those with extensive support needs?
Yeah. So, you know, my personal journey in my particular school district is not the guiding light. For people who want to make that shift, of course, in because in my district inclusion seemed to be an option, as long as it was permitted by my local administrators, my school administrators, who by the way, always supported me when I wanted to be inclusive and invite students from the special education classrooms to be part of my classroom. But I often heard from district personnel. We quote unquote, we are not an inclusion district. Yeah, I know. There was definitely a clash in my values of inclusion for all students and our districts value of standard procedures. But there I just did an a podcast interview with a school district to here in San Diego, Poway Unified School District. Megan Gross and Nancy, Brendrett, were, you know, they're they're leading the charge in their school district. But the difference is they have a superintendent who supports it, and district administrators who fully support it. And they are not just me. They're not recreating the wheel. They're looking at time schools models, they're looking at swift schools models. They're working with agencies in California that are helping to support them to move in a systematic way to completely change and educate educators about how to be effective in implementing systems change within our schools toward inclusivity. You asked, So what has been effective in making those shifts and getting students with extensive support needs known and understood by their peers and others in the school community? Since I couldn't change into the politics of my district. And once I knew more about disability from a social model perspective, once I started teaching disability studies, at the college level, I started to recognize, oh my gosh, there's so much that we need to understand, we need to shift from a medical or deficit model of disability over to a social model of disability. And instead of having disability awareness, we need access awareness. That's where our focus needs to be. And so I began leading what I call beyond awareness events on my campus, which by the way, were applauded by district administrators. And this was my way of planting a seed in the hearts and minds of students and staff and administration, about ableism, about access, and inclusion, about assistive technology, and disability history, disability rights, disability justice, and respectful language. So the way that I did that was not by me teaching all these things to my school, but by inviting individuals with lived disability experiences, to come and share about their lives and their passions, and how any of those previously mentioned topics related to their journeys. So that's, that was my work around, that's how I had an impact in my district, in terms of mindset, and, you know, hopefully, with repetition, and those children being the adults that are coming in as teachers and administrators in the near future, then we'll you know, we'll have that shift like other districts are having those shifts over to inclusion. Yeah,
I totally believe that these seeds that you have sown along the way, will will bear its fruit and your time. And I think what you're doing right now, I think inclusion doesn't happen. It's a journey, right? Inclusion is a journey. And while we're all aspiring to get to that fully, authentically included society. And we have come for I think, in the last five years, the amount of talk and action oriented grants and stuff that are happening is quite something that we have to recognize and appreciate. And I feel like this growth is going to be exponential, as we all realize, and really understand this is so essential. For a happy society. Right? Everybody's happiness.
Yes. life quality. Yeah. For everybody.
And, yeah. So do you have a story to share of the change that happened because of your disability awareness initiatives?
Oh, yes, I do. Let's see, well, every year after our annual events, I received emails and cards and testimonials from teachers and students and volunteer speakers, the like, everyone felt enlivened, and excited for their new learnings and their opportunities. And parents have expressed to you that years later that now their children are adults, they've never forgotten the lessons that they learned from our speakers who came in and shared with them. And they feel culturally competent. And they have inclusive mindsets. Now, as adults and community workers. My principal, even told me that her son who's an EMT, felt felt very comfortable working with people in the field with disabilities. You know, and that's not always the case for people. So I'm, I'm really glad about that. But one particular incident, I recently retired from teaching elementary school due to my own disability experience. And I supported one of my colleagues and Draya to continue our school's 20 year tradition of holding an annual beyond Awareness Celebration. And she was so excited. The day after the event, the event was amazing. And she was so excited. She sent me a text that read in the morning, the next morning, I woke up and the sun was shining brighter than I'd ever noticed before. Thank you. So that that is you know, that is a sense of empowerment and the knowing that your work will matter. You know,
yeah. The Journey carries on you you you haven't ended, you know, you have left something that's going to continue after you. Yes, but
really nice and after her, you know, she did it. She did it this time. And so it's not about it's not about me it you know, it's a out. And I know you didn't mean it that way. It's about the people who came and shared at the event who shared their journeys, you know, they deserve all the credit for all the time and energy they put into it. And and then about her taking that risk, and doing something she'd never done before, and not feeling like an expert, but knowing that what she was about to do was going to make a long term, have a long term impact on all those students, and just being committed to doing that, and changing the culture of our campus.
So any final words of wisdom for our listeners?
Well, yeah, so if you're going to do disability awareness, be sure to do it right. You know, don't rely on outdated simulation activities. Don't speak for people with disabilities, invite people with actual lived experience, to do the speaking and follow the guidelines that I set forth, you know, that are based in a social model, not in a medical or deficit model of disability, people can check out my free resource called the five keys to going beyond awareness and that can be found at go beyond awareness.com/keys. And listen to my podcast as well as yours saveetha. It's called beyond awareness, disability awareness that matters. Those two things will really help guide you in knowing what what the topics what the content should be. For any disability awareness event, just just don't rely on our old outdated things. Let's move forward towards access awareness and move beyond disability awareness. Thank you. And
I'm definitely going to post all the links to your TED Talk, to your website and to your podcast. And I think they are a must listen for whoever wants to take on this role of being agents of inclusion in their community.