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What You Need to Know to Advocate for Disability Justice | The Neurodiverging Podcast

Dr. Bibi Pirayesh has spent the last 15 years working with hundreds of children, parents, teachers, and schools as an educational therapist to enhance the lives of children with learning disabilities. While the emphasis of her work is on remediating learning disabilities in a one-on-one setting, she is also a sought after community advocate for children and families around learning rights. In 2020, Dr. Pirayesh launched The Difference is Not Deficit Project to help promote the importance of seeing learning disability as a social justice issue.

In today’s interview, we’re covering:

  • what an educational therapist does and how they support students
  • how Dr. Pirayesh uses her background in neuroscience to helps students succeed
  • the ableist nature of the education system and the need for systemic change to make it more inclusive
  • the normalization of shame around difference and disability

 

Want to listen? This post is based off of Episode 68 of the Neurodiverging Podcast! Listen on Apple PodcastsGoogle Podcasts | Spotify | Youtube

 


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Show Notes:


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Transcript of Episode 68: What You Need to Know to Advocate for Disability Justice

Our gratitude to n. henderson for their work on this transcription.

DANIELLE: Hello, and welcome back to The Neurodiverging Podcast. My name is Danielle Sullivan and I am your host. Today, I am so happy to welcome an amazing guest to the program. we have DR. BIBI Pirayesh, who is an educational therapist and learning rights advocate based in Los Angeles, California. She’s spent the last 15 years working with hundreds of children, parents, teachers, and schools to enhance the lives of children with learning disabilities.

She also regularly speaks on neurodiversity, educational therapy, and learning disability as a social justice issue on podcasts and stages and as a university lecturer, so I’m so thrilled to have her today.

Dr. Bibi is a first-generation immigrant and English language learner, and she draws on a unique multicultural perspective, as well as years of specialized education on these topics, and over a decade of community experience and advocacy. She also holds a bachelor’s degree in neuroscience and education from the University of Pittsburgh, as well as her master’s degree in Developmental Psychology from Columbia, and she has worked as a learning specialist and an educational therapist in private practice for over a decade, and in her Master’s her work focused primarily on children’s development of mathematical thinking and cognitive neuroscience. And, if you are a listener of the podcast, you know that I have a significant interest in neuroscience although I am not a professional, and so I was very excited to talk to her about that today as well!

Today on the podcast we’re talking about what a learning disability is, both kind of practically from our lived, everyday experience, as well as from a system’s perspective what it’s legally or educationally defined as. We’re also talking about what an educational therapist does and what Dr. Bibi does in her practice and why it’s so needed, and then we’re spending a good amount of time on talking about the social justice aspects of a learning disability. Why is learning disability a social justice issue, and how can we advocate on the ground as neurodiversity advocates, as social justice advocates, to redistribute equity in our educational system? We had just a fascinating talk and I’m just so excited for you to hear it.

Right before we dive in I just want to say a huge thank you to my Patrons over at patreon.com/neurodiverging. Patrons throw in a couple of bucks a month to support this podcast, and in return get perks like ad-free podcast downloads, coaching resources and coaching videos, group coaching videos, access to all of our educational webinar recordings, and lots of other cool stuff. So if you’re ever interested in becoming a Patron and supporting this podcast, please check out patreon.com/nerodiverging. Thank you so much to everybody who supports this podcast, we couldn’t do it without out. And now without further ado, here’s my conversation with Dr. Bibi Pariyesh.

Thank you so much for joining us on The Neurodiverging Podcast Dr. Bibi, how are you doing today?

DR. BIBI: I’m doing well, thank you so much for having me.

DANIELLE: I’m, as I was just saying, so excited you’re here. I know you have been in the field of educational therapy for learning disabilities for a very long time and have done a ton of advocacy work, so thank you so much for being on Neurodiverging!

I was hoping to get started, for just the purposes of this conversation we’ve talked about learning disabilities on the program in other contexts, but for the purposes of what you do would you be willing to give us kind of a working definition of learning disability in terms of the kids you work with?

DR. BIBI: You know, the way that we define learning disability really has a lot to do with the way that it is defined under the law because so much of the work that we have to do has to do with the types of services that children are able to get in the school system. So, obviously, the way that it is defined is a significant discrepancy between intelligence and ability and a specific skill.

I don’t necessarily, myself, define it in that way. I really see a learning disability as anything that has to do with our learning that gets in the way of our functionality, but unfortunately, that’s not really the way that we define it under the law, and so there are a lot of people that I feel would fall under that category who don’t necessarily qualify for the diagnosis, which leads to this sort of large portion of the population that fall under a grey area.

So, students, children, and some adults who really do struggle in terms of their functioning but don’t quite even qualify. But yeah, for me it really has to do with everyday functioning, but the way that we’ve defined it in the DSM or under IDEA, obviously, is different from that.

DANIELLE: Thanks so much. That’s really helpful right away to just get there’s sort of two definitions straight off; The kind of educational system’s definition or the legal definition, versus sort of the practical, on-the-ground definition of, “Can we do what we want to do,” (laughs) “effectively and access the things we want to access without significant barriers?” So, thank you so much.

And so, I know you’re an educational therapist. I don’t think we’ve had any educational therapists on our program before, so thank you so much for joining us. And I feel like this is a relatively — well maybe you can tell us. When I was a kid, I’m a late-diagnosed autistic, so I wasn’t identified ’til I was in my 30s, and I am certainly, along with many of our listeners, one of those people who maybe could have used support in school but didn’t “function” poorly enough, masked very highly, and so were there even learning therapists in the 1990s? How did this field — you don’t have to be a historian in this field, but from your knowledge when did this sort of start becoming a thing, and what are some of the things you do to help students, like, access their education?

DR. BIBI: Sure. I mean educational therapy — I had never heard of educational therapy until I, sort of, was outside grad school. Was kind of — I really fell into it by accident. So, you know, it is actually an older field, so there are people kind of like the founding members, it’s a field that came over from Europe to the US and has been around for a long time. However, it’s very different, it’s very different than, for example, a speech-language pathologist or an occupational therapist. Fields that are very clearly defined based on state licensing, et cetera.

It’s a very different field. It’s one of the reasons I think that I like it so much, is that there’s so much more flexibility, but — (stammers) so, I’m sure there were educational therapists back in the 90s, whether they were identified as such I’m not sure. Certainly in the public school system we don’t have anything called an educational therapist. In a lot of private schools now you tend to see — I mean, in certain areas, so there’s certain areas where I feel like the field is more well-known, like West Los Angeles where I have my practice, and then there are many, many areas where people have never even heard the term.

I’ve heard it used sort of somewhat interchangeably with the term learning specialist. Some people use that term, but an educational therapist is essentially, or should be, a person who has training in different types of learning differences and learning disabilities and understands how the learning process is impacted, and can therefore teach explicitly to those differences.

I think that probably something that is somewhat similar, I would not call it equivalent but somewhat similar in the public school system, is maybe a special education professional. But I definitely think that one of the things that we see that I believe is somewhat problematic in our public education system is that most of the work is centered around accommodations and modifications, whereas educational therapy is really based around remediation in the places where remediation is possible.

I mean, obviously, there’s also accommodations, modifications, advocacy, all of that, but I think one of the reasons that people seek out an educational therapist is that they’re not able to get the kind of targeted, expert intervention for children in the school system, and so we sort of created — unfortunately, I think it’s a problem, we’ve created a private economy around that. That tends to be what happens a lot in the US so (stammers) — I would love to see more of a merging of the fields, but currently, it’s sort of its own very separate field, and it’s not covered by most insurance, which is another reason why a lot of people may not have heard of it and may not know that there is something like this that they can access.

But there is a national organization, it’s called the Association of Educational Therapists. It’s a really good way to try to find an ET if you’re looking for one. But yeah, it’s kind of in a lot of areas an unknown field.

DANIELLE: Yeah. Thank you, that’s so helpful. I’ll put the link to the educational therapists website, national organization, down below so folks can check it out. I just have a follow-up question around the turn remediation. So, when you offer that to the students you work with and their families, what are some — is it skill-building? Or what are some of the more specific, I guess, areas or interventions that you’re going to be using to offer that?

DR. BIBI: I came to educational therapy from sort of a science background. I was always interested in how learning happens in the brain, so I sort of came from that neuroscience background, and I was also very interested in how that translates to teaching. Which I know is like a big — it’s been sort of like a buzz, trendy thing for a long time now, but I’m not sure that we really have any real connection between neuroscience research and education, yet.

DANIELLE: Yeah.

DR. BIBI: However, I would say that that is the one place, so when we talk about remediation, that is the one place where you can really begin to see this connection. So, I think we have to be careful about the word remediation because the point is never to remediate, or fix, or cure the disability, however, there are ways, because the brain is plastic, to help build new neuronal pathways that can really help with that functionality that I mentioned earlier. So, you know, a really sort of more simple example that people can usually visualize or think about is the example of a specific learning disability in reading or something that falls under the larger kind of umbrella term of dyslexia.

So, you know, I have students who come to me with that diagnosis, or some without the diagnosis but just unable to read, without really the type of targeted reading intervention that could be really, really beneficial to them. So that type of intervention would be an example of remediation. So you can do a lot of, like, drill and kill because that’s what’s required to build new neuronal pathways, but all the different neurodevelopmental constructs, so the underlying skills that we have to have in place for learning to be able to occur in the ways that we expect it in a classroom setting, those are the areas that a lot of students are struggling with, but those are things that you can remediate.

So you can increase digit span, you can build memory pathways, you can train the brain to be able to tell apart the sounds of speech if it doesn’t naturally do so, so the kind of work that you would do to create those pathways is what I would consider remediation.

DANIELLE: Thank you, that’s so helpful. I really appreciate that. So it sounds like you have to have specialist knowledge in a lot of different areas in order to create, like, a learning plan for a child, or you’re working with a ton of different professionals to access all that. So, you must be very busy (laughs) —

DR. BIBI: (laughs)

DANIELLE: …with each client you have.

DR. BIBI: Yes, I would say you have to do all of those things. I take a very, I don’t know, somewhat I would call it like a boutique approach, because I am a big believer that you can’t just — and you know this is not just for educational therapy, I think this is true for all therapy, and I think this is true for all education, you can’t just sort of isolate a student in a one hour or 50-minute session in your week and expect to have profound changes. I really believe that you have to get to know that student and you have to get to know that student’s school environment, their family environment, their, you know, like social, emotional relationships because we know all those things impact learning.

So, for each of my clients, I would say maybe they take like one or two hours of my time in terms of actual client sessions, but they take a lot more of my brain space, I think, when I sort of take on the whole family. So as a result, I do have a very small practice. I only work with a limited number of students. I have people who also work with me, for me, but generally speaking, I keep it small because my approach is so, I guess you could say, thorough.

It’s sort of just my philosophy of education (laughs), so that’s the way that I keep it. Not everyone does it that way and it’s not to say that other types, you know, other approaches don’t work, but I’ve found that this is what works best. And then of course within that, you do, you have to have — and this is part of the work of educational therapy in my opinion, so you have to have active conversations and an ongoing relationship with other professionals who are in that child’s life like their therapist for example, their teacher, their coach, whoever plays a role in their life.

And so the educational therapist in my opinion sort of plays the role of someone who’s sort of like the leader of the hub, and they’re the one that’s in contact with everyone and really manages. There’s a lot of case management I think that goes, because, yeah, children are not — they don’t grow up in a bubble, they grow up in (laughs) a real world, and so you have to be actively involved in the real world.

DANIELLE: Yeah. There’s a lot of the community aspect to raising kids, not just with the, kind of, parenting piece or the teaching piece, but that we need all these people to be talking to each other, and especially with a kiddo with any kind of neurodivergence or challenges or learning disability, so. That’s amazing.

So, I know you do a lot of work, and you referred to it earlier, around sort of the social justice issues in how our culture, educational system, legal system, all the systems (laughs softly) approach kids who need anything different, I guess, than the standard, conventional education system, which I would argue is, like, a lot of children (laughs) and maybe even most children.

And for your reference, I have a 8 and 10-year-old who are ADHD-autistic who we actually started homeschooling during the pandemic, so we’ve talked about that on the program before. In part because — and we’re like not rich-rich, but rich enough white people in a very liberal area in Colorado with very good school systems and really — teachers who actually have a good amount of support and funds at their disposal, and it was still really challenging to get resources and support that actually worked for my kids. And so we ended up homeschooling.

Which I’m very happy about, but also makes me very frustrated on a larger level because it does feel like you’re pulling the white person card of instead of, you know, staying with the system and trying to make the system better just yanking them out of it, but at the same time, the system was like actively harming, like you could see it in my kids’ personalities.
And so, I feel like when I talk to home — homeschooling is pretty popular in Colorado, and there’s a lot of neurodivergent families and families with kids with disabilities who end up homeschooling, and I hear that repeated a lot, that we don’t actually want to necessarily be homeschooling, and we also can’t figure out how to, like, make the system better for our kids.

And we know that we are leaving the system even more inequitable, because as you said it creates this privatized, a bunch of privatized resources instead of it all being of equal access to everybody.

So, I would love to hear (laughs) — I know you’ve worked in this area for a lot longer than I have, I would love to hear any advice you have or suggestions you have around how to advocate for kids with learning disabilities within the school system, or how to help push the legal system and the — all the systems, they’re all integrated, right? To be more inclusive and to make all the pushing we do as parents actually worth something. Because I feel like so many of us have experienced just pouring ourselves into the IEP meetings, and the counselor visits, and all the therapy visits and just not really getting much back.

DR. BIBI: Yeah, I mean (laughs) that’s a million-dollar question.

DANIELLE: I know, I know! But I figured if anyone has ideas, you know? (laughs)

DR. BIBI: Well, you know, I really think that the first step has to be just, kind of, recognizing, acknowledging, and labeling the system for what it is. And I think that one of the places in which people maybe get a little confused is that we tend to think that our education system is based on these, you know, sort of democratic ideals, and a lot of us who come up against these types of issues think, “Oh, well maybe it’s me,” or, “It’s just not working for my child,” or whatever it is, but the fact of the matter is that the system is ableist from the ground up. And the reason for that is that our ideologies, the ideologies that the system is built on and reflects are quite ableist.

And I say that because the way that our education system is created is that we sort of put, we’ve sort of said, “This is what it means to be educated,” or, “This is what it means to be,” like, let’s say an A-student, or, “This is what a curriculum should look like,” so there’s sort of this idealized version of things, and then anything that doesn’t fit that is othered and kind of pushed out. And so what we have is not an education system that is a reflection of what actually exists, which, like you said, is, you know, many people who don’t learn in that very specific way, but rather this very rigid, very narrow way of thinking about education and learning.

So, as a result of that, everything that we do in special education, it’s almost like charity, right? So, what are the different ways that we can help these poor people who don’t quite fit into this? As opposed to acknowledging the fact that, no, those people are part of the majority and our education system should be reflective of everyone. So, I really am of the belief that the most important thing that all of us have to do is to be politically conscious and politically active because the decisions are political decisions. It’s basically, you know, who we are voting for, how we are writing our laws.

You know we, again, like to think of special education in general, or the way that we talk about our IDEA and all of that, as this amazing legislation that grew out of the Civil Rights Movement, et cetera. And of course, it’s maybe better now than it was in some ways before, however, we need to also understand that the law is very specifically written to put the burden on the parents, which means that parents of means or parents with resources are going to be able to provide things for their children that parents without can’t, and that is at its very core, obviously, a social justice issue.

But you know, I think even outside of that, I’m really glad that you mentioned that even having all of these resources you’re finding it difficult. I certainly face that. So I work in a very wealthy part of — one of, maybe, the wealthiest parts of the nation, and I’m able to see parents with every imaginable resource have their children regularly fail in their schooling experiences. So what that really shows us is that it’s not really about money, it really is about ideology. It’s about the way that we see and frame difference, and until we can shift that I don’t really see much else shifting.

So that’s really the reason that I always encourage people to try to get to the roots of it, and then try to push back in those places. One way, for example, when I talk to groups of teachers and educators and educational therapists, other people like me, I always ask them to think about when you’re advocating for a child or you think you’re advocating for a child, are you really advocating for the child or are you advocating for the system? Are you advocating for upholding the system and asking it to please just allow this child to somehow access or fit in? And to recognize that shifting that, and sort of taking the burden off the student and putting it back on the system is really the most important step that we all have to take.

And that’s a political step. Not necessarily political in terms of like, “We’re gonna go out —”

DANIELLE: Marching.

DR. BIBI: …although I wish we would, but just political in terms of our own consciousness and our own way of thinking about it. And I think the more of us are able to do that and the more we’re able to help students recognize that, because students naturally assume that it’s them, it must be them, and not the systems in which they’re trying to live. The more we do that, the better the chances of a different kind of future will be.

I know that that’s not very (stammers) like a very, “Here’s step one, two, three,” but I really do think that it has to begin with that political consciousness building.

DANIELLE: Yeah. And that sort of awareness building or (stammers) — I’m trying to think of the feminist term for it, the consciousness-raising, right? The figuring out that you’re not by yourself but that you are within a system that’s being experienced by all these people is, as you said maybe not a one, two, three, but I think it’s one of the most important processes in just our general individual wellbeing too. Is knowing what we’re responsible for and what is — how do I want to say?

Maybe just that in my work with families and neurodivergent adults I see a lot of shaping themselves or internalized ableism around things that are not really anything they can control but are, as you said, the system working exactly as it should be working, and thus putting a burden where we can’t shift it ourselves independently or individually, yeah.

DR. BIBI: Right, and our school system… Maybe we don’t talk about this maybe as much as we should, but our school system is the primary place in which we teach and normalize that shame. So it’s the place in which we teach children that some people are in the in-group and some people are in the out-group and that there is a hierarchy and this is your place in it, and these are the negative feelings that are associated with that. As opposed to, “No, everybody has a right to exist in whatever sort of capacity they exist in.”

So, I think one of the reasons that we see so much pushback from our school system is that one of its primary functions is to teach and normalize the shame that goes around difference. And I think that oftentimes just recognizing that is a really important paradigm shift for people.

DANIELLE: Yeah. Yeah, that’s really interesting, thank you. So on one level the effort to diversify schools and school leadership and educate teachers and, you know — I work sometimes as an educational trainer and give presentations around, like, you know, inclusivity for, say, autistic peoples. Or teaching teachers some basic knowledge about autism and ADHD so that they can approach their students with more kindness, honestly, but to some extent it sounds like that the school system can’t coexist. This sort of liberal ideal of the diversified school system that accepts all difference and promotes difference can’t coexist with the foundational paradigm of, you know, “We’re gonna do it this one ideal way,” as you say.

DR. BIBI: (laughs) Yeah. I mean, listen, I do think that the small steps that we take help, they help. But I also think that we need to recognize that unless we’re willing to interrogate what I would say are the epistemological roots of our systems, we’re essentially a lot of times just changing, like, the window dressing.

I think this is something that we really saw happen for example with the whole DEI, the Diversity Equity Inclusion movement that suddenly, like, became really big after George Floyd protests and all that, and then all of a sudden corporate America has all this like DEI training and this, that, and the other.

Does that mean that it’s completely useless? No. I mean bringing these things to the forefront of our consciousness, sure, is good, but can you really have diversity, equity, inclusion in like a corporate setting? No. I think a lot of it is — and now it’s created this whole other industry, a private industry, a, you know, capitalist industry now around something that’s like a social justice concept which is almost laughable.

But that tends to be what happens, and I think that it’s something that we have to be really aware of because I do think that we’re currently going —There’s revolutionary things happening, I mean even around the concept of neurodivergence and neurodiversity and people really stepping out and thinking about their experiences. There’re big shifts happening, and I think we have to be really careful to make sure that all of that doesn’t then just get engulfed by the larger dominant system and essentially just become like a rebranding of the old thing in a way.

So it’s important that we remain diligent and critical, and don’t just sort of fall into, “Oh, well now we have these terms,” (laughs), “so everything is okay.” Because again, coming back to this question of functionality, the question always has to be how does this translate into the material differences of people’s lives? To what extent has it changed that or is it changing that? And if we’re still in a world in which people feel like they need to pull their children out of the school system, then we haven’t made the changes (laughs).

DANIELLE: Yeah, yeah. Thank you, that’s fantastic. I really appreciate that. I want to make sure we have time to talk — because you have done this project that is maybe its own kind of consciousness-raising, the Difference not Deficit Project, I know I saw it on your website. So I’d love it if you could tell the audience just a little bit about that, how it came about, what the purpose is.

DR. BIBI: It’s something that grew out of the pandemic, but it really goes back to my belief about the importance and value of people’s personal stories and their lived experiences. You know, when you asked me what are some important steps that we can take in terms of changing our political lives in many ways, I really think it goes back to our personal stories because the personal is political. And this is really an initiative to encourage people to share their personal stories of how they have experienced ableism, of how they come up. Either in ways in which they’re able to fight or ways in which they feel very much defeated by, because all of the stories matter, not just stories of triumph.

Just in terms of how are we experiencing, for example, the education system? Whether you’re a student or a parent, or a teacher or an advocate, however it is that you’re coming across that. Because I think that the more we hear each other’s stories the more we remember that we are the system, we are the most powerful components of the system, and the more shared stories we have the more we know that the system is not working for us and so it needs to change.

So that’s really the goal of that initiative, and it did grow out of the isolation that I felt everybody was feeling while we were in the pandemic. Which in many ways lifted the veil on the struggles that people really have, but were not really able to voice before the pandemic.

DANIELLE: How could people find out more about you if they would, say, like to book a training with you or learn more about your services?

DR. BIBI: Sure, so probably my website is sort of the place that has the most information. It’s www.oneofonekids.org and my speaking page is on that, our community page is on that, all of the social media and everything. I also tend to be pretty active on LinkedIn. It’s sort of where — I sort of treat it maybe the way that a of people use Twitter, where I engage with a lot of what’s happening in the larger culture around education and special education, so that’s also a really good way to find me.

DANIELLE: Great. Thank you so much, Dr. Bibi. We really appreciate you being here, today.

DR. BIBI: Thank you so much for having me, and thank you for this platform.

DANIELLE: Thanks so much for joining us on the podcast, today. I hope that this conversation was inspiring and enlightening for you. If you enjoyed please hit the subscribe or the like to let us know, it really helps us out. Please also check out Dr. Pirayesh’s social. Her LinkedIn and her website are down below, as well as her Difference is Not Deficit Project, which is an amazing community effort to promote the importance of seeing learning disability as a social justice issue. I hope you will join me in participating in that.

All the links are down below as well as the link to our Patreon, again, is patreon.com/neurodiverging. We could not do this podcast without you Patrons, thank you so much for your support. Until next time, please be well, and please remember that we are all in this together.

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