Welcome to Episode 57 of the Think UDL podcast: Neurodiversity and Public Relations with Jess Nerren! Jess is a full time Lecturer in Communication Studies at California State University, San Bernardino and also a full time doctoral student in educational leadership. In addition, she is a parent of an individual with Autism. Jess brings a wealth of Public Relations experience in the private sector before transitioning into academia, and she combines that with her lived experience as a parent to a neurodiverse son to better her teaching, her Public Relations work, and her current dissertation topic. In today’s episode we talk about the PR makeover that neurodiversity needs and is getting with UDL and the continued shift we need to make in higher education and in the workforce to better serve all of our students, clients, and our world. I met Jess serendipitously on social media when we both were offering a colleague some ideas to help neurodiverse students in the classroom and I was immediately impressed by her generous and thoughtful answer. In subsequent conversations, I learned how she is researching and doing the work right now that I think we need to be doing to flip the script on how universities and the public see learner variability, neurodiversity, and difference in general. It was my absolute pleasure to speak with Jess and I am so glad to bring this conversation to the Think UDL listeners. And I want to thank you for listening and I think you’ll enjoy this discussion on UDL, neurodiversity, and Public Relations.
Resources
Contact Jess Nerren at:
- LinkedIn at Jess Block Nerren
- Email: jessica.nerren@csusb.edu
- Twitter: @JessBPhoto
- ResearchGate: Jess_Nerren
Jess mentions these resources:
AEJMC Kopenhaver Fellowship and the AEJMC (Association for Education in Journalism and Mass Communication)
Scholar Erica Ciszek expanding PR into critical spaces: See Erica Ciszek’s Researchgate profile here
The Miracle Project and the documentaries about The Miracle Project: Autism the Musical and Autism the Sequel
Jess mentions a few acronyms and we wanted to make sure you knew what they were:
HSI: Hispanic-Serving Institution
IEP: Individualized Education Plan
IDEA (full text): Individuals with Disabilities Education Improvement Act of 2004
IRB: Institutional Review Board
And here are a few more resources if you would like to find out about the Northwest Center and Nepantla (2 resources): Nepantla: Writing (from) the In- Between and Nepantla: Making a Space for Discomfort in an Elementary School Classroom (This resource refers to K-12, but is appropriate for understanding in higher education)
Lillian mentions Communication First’s short film Listen in talking about listening to and portraying those with autism in a way that comes from and is directed by individuals with autism.
Transcript
Lillian Nave 00:00
Welcome to think UDL, the universal design for learning podcast where we hear from the people who are designing and implementing strategies with learner variability in mind. I’m your host, Lillian Nave. And I’m interested in not just what you’re teaching, learning, guiding and facilitating, but how you design and implement it and why it even matters. Welcome to Episode 57 of the think UDL podcast, neuro diversity and public relations with Jess and neron. Jess is a full time lecturer in Communication Studies at California State University, San Bernardino, and also a full time doctoral student in Educational Leadership. In addition, she is a parent of an individual with autism just brings a wealth of public relations experience in the private sector before transitioning into academia. And she combines that with her lived experience as a parent to a neurodiverse son to better her teaching her public relations work and her current dissertation topic. In today’s episode, we talk about the PR makeover that neuro diversity needs and is getting with UDL. And the continued shift we need to make in higher education and in the workforce to better serve all of our students, clients and our world. I met just serendipitously on social media when we both were offering a colleague some ideas to help neurodiverse students in the classroom. And I was immediately impressed by her generous and thoughtful answer. In subsequent conversations. I learned how she is researching and doing the work right now that I think we need to be doing to flip the script on how universities and the public see learner variability, neurodiversity, and difference in general. It was my absolute pleasure to speak with Jess, and I am so glad to bring this conversation to the think UDL listeners. And I want to thank you for listening. And I think you’ll enjoy this discussion on UDL, neuro diversity, and public relations. I’d like to welcome to the podcast, a new friend that I met through social media actually, when I saw her answer a question so expertly that I said, I have to meet whoever this person is. And so this is Jess, block narron, from California State University at San Bernardino. And I wanted to say thank you, Jessica, for joining me on the podcast today. Thanks for like taking an hour.
Jess Nerren 02:59
Thank you so much for having me. I really appreciate the opportunity to be here.
Lillian Nave 03:03
Yeah. So when I saw your answer on this higher ed posts that has, you know, 1000s and 1000s of people that talk about shop, really and in teaching in higher ed and you expertly handled a question about how to really reach all your students, and what are some ways that one could creatively teach. I thought, Oh, boy, this is a smart person that I need to find out a lot more about. And so thank you for letting me somewhat stalk you on. And answering me, because it turns out, you have a lot to offer, as both a full time lecturer in Communication Studies at Cal State University in San Bernardino, but also a full time doctoral student in educational leadership. And we’re also going to get there a parent of an individual with autism, that all of those things have really shaped your way of thinking. And I wanted to talk about actually all of those things today.
Jess Nerren 04:07
Great. Great. Great. So
Lillian Nave 04:09
I want to start out with the question I asked all my guests, and that is what makes you a different kind of learner.
Jess Nerren 04:16
Well, you definitely touched on some really important elements to the answer to that question. Right. So I am a parent of a 15 year old, who is an individual with autism. And so not only have I been his primary caregiver for the last 15 years, but I’ve also been his primary advocate for the last 15 years, helping him navigate an educational system that is not always necessarily designed for him, or designed in a way to include him and so not only has that shaped his life that’s also shaped my life and my perspective, right. And and the way that I learned and the things that I want to learn more about, I mean ever Every day in my personal life, I wonder, Well, why is it like this? Right? Where did this come from? What does it mean? You know, when this thing happens or when nothing happens, and and I love that so many people in education are so eager to learn and so receptive to having conversations, right? I’ve been asked so many great questions. But also, you know, just like many things in diversity, equity inclusion, that’s also a burden on the family and on the individual, right, like, not only to go through life with whatever your unique struggles may be, but also to be like, educating and informing everywhere you go all the time, a lot, you know. And so as, as a learner, I think about what unique stuff could I bring to make it better in the future? Right, and my journey has been, how can I go from this being a struggle to something that I love that I feel like maybe 10 years from now, or 20 years from now, or when I have conversations with my son, about 100 years from now, it will be better, it will be different, right? It won’t be like this in your lifetime, you’ll see something different than I think about like, okay, as my journey, you know, as a person, as a learner as an educator, what can I do to contribute to that, you know, what do I have that in my unique skill set, you know, formerly as a publicist, right, in particular, surrounding topics of behavioral health and autism and special needs within my work in the private sector, you know, before it was an educator, what can I do to bring that into a translation of education, inclusion, and bringing people like my son, and the many people that share things in common with my son into the fold a little bit more, right, and maybe that there’s relics of the past of exclusion that still need to be kind of cracked open a little bit and looked at, so that we can put them on a shelf and put them aside and bring something better for, you know, today, tomorrow, the next generation, etc.
Lillian Nave 07:14
Wow. And I can tell, I get a chance to interview people and I see their faces, and the entire time you’re talking, you have the brightest smile and so interested in energized by doing this. And I, I, I hope that everybody can hear that in your voice too. Because I definitely saw it with your energy and your vibrancy and just answering a question on social media. And so appreciated that. So I know I part of the reason why we started think UDL was to get the chatter up in higher ed. And beyond that more people are thinking about neurodiversity. More people are thinking about universal design for learning strategies in a way that is more than just accommodation or accessibility. But really, you know about that educating the public and really letting people in on this diversity and wide variety of awesomeness, right? And how we can value that and leverage that to make the whole learning environment better that it’s, you know, it’s better when we have everybody participating in the way that they can participate. And we’re better for
Jess Nerren 08:24
it. Absolutely. Yeah. I mean, and it’s interesting, because there’s, when, when you were saying what you were saying, I think about, there’s kind of two roads that that conversation can go in, right. And there’s the you should, you know, find your extra time that you don’t have, and you should do this with it. And then there’s the, let’s elevate this opportunity that we have to make it easier and better and more meaningful for all of us, you know, and Where, where, where something happens, what’s happening upstream, that we can really look at and make better and easier and more productive and more meaningful and more fulfilling, right? I mean, if as an educator, if I reach more people in my class, I go home happier. Right? It’s made to be a win win. Not a all of a sudden, you have to do a lot more work. On top of the lot of work you’re already doing. Right, exactly. It’s
Lillian Nave 09:27
a flip the script, right? It’s not just here’s what you have to it’s, here’s what I get to do. That was a big change for me.
09:34
Yeah, yeah.
Lillian Nave 09:37
So okay, so you’re both of Okay, you’re you must have a lot of energy because you’re both a full time instructor and a full time student. And so I’m interested in in your perspective and both roles. So as a communications instructor, and it’s in strategic communication, concentration, I believe, right. That was sort of like public relations. Okay. at Cal State University in San Bernardino, how do you incorporate universal design for learning principles to expand the role of public relations efforts into the space for the public? Good? I’ve never talked to anybody about that specifically,
Jess Nerren 10:16
yet. So and this is related to a lot of the work that I’m trying to do. Right. So I’m Kathy San Bernardino is an HSI, it’s a Hispanic serving institution, we serve almost almost 80% first gen learners, over 60% of students who are Latino, Latina, Latin x. And so we have unique learners, who are law, you know, with many different kinds of unique learners on our campus. And so I go into my role every day thinking, not everyone is going to learn the way I learned, right? I’m an old school, give me a great lecture, and I’m good to go, right. And I cannot bring that into my classroom. Because, you know, people’s eyes are gonna glaze over, they’re gonna be done. And it just makes everything even worse. Right. And so, um, you know, there’s some really great scholarship coming out. And for instance, out of a JMC, one of the early career copenhaver fellows for this year, and a lot of the great conversations within our field have been about PR is more about more than, you know, making a fortune 500 company money, right? And how can we dabble in the idea that maybe PR and strategic communication has some tools, not only to exam, right? Because in education, a lot of times we’re thinking about examining perception, what’s the perception done, it’s static, that’s it, that this is the perception. Here you go, that’s the end of my study. Right? PR and strategic communication sometimes is about how can we change and shape perception into that next round of perception, which then leads to action, which then leads to different outcomes? And so if we can use some of the tools of public relations, for opportunities, like maybe having that different, that change of perception about UDL, or maybe, you know, having a change in perception about you in the classroom, and about education in general, right like that, maybe that idea of going from there’s one right answer, and you have to figure out what I picture in my mind, too. There’s lots of great answers, and you just need to defend your great answer, and you’re going to become a better scholar along the way, you know, and you’re gonna bring your cultural stuff into this opportunity to shape your education for etc. And so there’s just some great opportunities there to say, No, no, what we’re doing. And it’s scary, right? Because PR for a long time, PR has its own dark history. But there’s an opportunity to step into something that can serve both areas and saying, PR and advocacy play nicely together, PR and changing perception play nicely together. So what can we use that for? So that in an educational environment, we can we can take all these great perception studies and take them that one step farther and take them that one step farther, and help guide people into a perception that might motivate them to do even more UDL or might motivate learners in the classroom. To access you know, I tell my students in the classroom, you’ve got a buffet of options, right? We’re learning online, you got a buffet, if you’re going to the buffet hungry, right? I don’t, whatever you take from the buffet, you need to take something, right, and then you’ll leave the buffet full. So you might take the word adanya, you might take the turkey leg, you might take the vegetarian platter, each one of those will help you accomplish your objective of leading the buffet for as long as you take one of them, but each one will guide you towards the learning objective of what it is that we’re doing here. So the I keep trying to articulate that same concept in these different areas that I’m working on. Because at the end of the day, all of us access information differently, you know, and some of your other podcasts, guests. They talked about that so articulately about, you know, if we’re privileging one kind of learner, we might be privileging an already privileged learner. And so we need to think about how we can make that access. more universal. Yes,
Lillian Nave 14:42
yeah. So it’s already you’re telling me how much you value your students and their differences that might be cultural, it might be linguistic, and it might be any number it might be neuro diversity, all of those things and knowing that you’re you Whichever way you learn best, or that you’ve always done, it may not be exactly yeah, what your students need and providing that buffet Oh, I, I’ve used that analogy, you know what that is, it’s so good, you know, to be able to go in and choose the method that’s going to help you the best. And what I’ve told my kids, especially when they’re younger is like, Okay, take all you want, but eat what you take, right? So yeah, and if you’re gonna go with the turkey leg, you need to work on the turkey leg, right? You need, you need to do that thing. And so some criticism that that I get all a lot of the times about universal design for learning is it might be softening, or, you know, dumbing down or making it easier or releasing the rigor. But when you’re saying, you know, if you take whatever it is from the buffet, but you have to do it right, you’re still going to need to go through the steps of the process, I’m here to help you. But you need to, you know, go forward with whichever that option is, but you’re providing options.
Jess Nerren 16:01
Yeah, absolutely. I mean, there’s still evaluation and assessment, right? I mean, there’s, it’s not do nothing. And I’ll give you a pat on the back and tell you that job. I mean, that’s not what we’re talking about here. I mean, there’s still Cause if you leave the buffet without getting a plate of food, you’re still going to be hungry, and there’s still countability for that you’re going to leave hungry. And you know, you’re going to be aware of that, you know, to keep going with the the metaphor, but I always try to stay really connected to, you know, both in my research, the research questions, and in my teaching and the learning objective, making sure that all roads will lead to that idea. And as long as you know, and I’m really lucky in the Kathy, it’s right, I’m given, you know, as a full time lecture, I’m given the opportunity to build my classes and make my course preps. You know, as a student, I’m able to go where my interests go. So I’m given a lot of academic opportunity. And I’m very, very thankful for that. That’s something amazing about Kelsey. But within that, you know, I always want to make sure that I can defend my choices, right. So I make very calculated choices about does this road lead to the same thing as this road as this road as this road? Right. And and it’s how you did the intro about the response on social media raised was similar, it aligns with that where someone was asking, How can I modify this assessment? And so that was the question I asked myself, even in that response, right? Well, how might they be able to show that same thing verbally? How might they be able to show that same thing visually? If they can show that they can show it as long as it’s going back to that objective or research question? So there’s lots of different ways to get at the same thing, right.
Lillian Nave 17:51
Yeah. Always having to know what your goal is, and, and being specific about that goal. And so there might be many ways to reach it. But it’s the same goal each time.
Jess Nerren 18:00
Yes, but I loved one of your podcast guests they were talking about you can’t you still can’t please everyone all the time. That was very liberating for me. In a room full of 32 people, not a, you know, maybe the buffet is not everyone’s favorite.
18:19
eaters,
Jess Nerren 18:20
right? You still have picky eaters, or you know, maybe they only like one thing or you know, whatnot, but that’s okay, too, right? If I get 20 here, and 20 here and 20 here and there’s 30 in my room, then we’re still gonna overlap in some kind of way that has the opportunity for success. So it’s not I’m trying to hit 100% satisfaction on on everything. It’s giving multiple opportunities. I mean, to me, that’s
Lillian Nave 18:48
absolutely great. Yeah. Okay, so I’ve got more questions about you know, the other parts of gestionnaire and we’re gonna find out about and as a doctoral student, you are doing some, I think, really interesting things and your dissertation topic is the public relations of inclusion, a critical reframing of autism inclusion with professors of teacher credentialing programs. And you’ve described it to me as a multi disciplinary study, weaving together elements of disability studies, communication theories, public relations, advocacy, deficit thinking, critical theory, special education, general education, Teacher Education and more. Wow, that is awesome and a lot so why did you pursue this as a topic because this is a monster and so needed?
Jess Nerren 19:42
It is a monster and needed I agree with you, um, I I’ve learned a lot about what it means to do a multidisciplinary dissertation. Yes. You know, and and things just kept getting added because They were important along the way. And I also pay for the price for that right? My first three chapters are over 300 pages long right now, no.
Lillian Nave 20:12
justification advisor loves you, I’m sure, yeah,
Jess Nerren 20:15
my proposal defense never mentioned length ever. But um, you know, one of the reasons of course, is this is motivated, inspired by my son, my son is one of the readers on my dissertation is motivated, inspired by current events, and challenges that individuals face. This is kind of an intense story. So trigger warning. But my acknowledgments include the Kenneth French story, Kenneth French was, is my next door neighbor, was my next door neighbor, the French family are my next door neighbors. And he was an individual with learning differences and behavioral differences, who was who was shot at Costco at our neighborhood Costco, and it was a really terrible situation based on our lack of understanding of individuals with differences within our own community, right. I mean, my son, he refuses to go to Costco now. He’s like, I don’t want to get shot, like my next door neighbor got shot, and you
Lillian Nave 21:23
know, really intense,
Jess Nerren 21:25
it is super intense. And so, you know, these things were happening in my personal life, as I was, you know, working on my research and on my dissertation and thinking about social justice and thinking about how do we do this population, right in our world? And how do we do this population wrong in our world? And then what can I do about that? Right? And so thinking about, if there’s challenges at the individual level, what are some of the challenges at the institutional level? Right, and and how do we not put this as much on the individual anymore? And how can we keep going upstream to look at what those institutional opportunities are for improvement? And so, at first, I was looking at teachers, and I’m very thankful to my amazing dissertation chair. And she was like, well, what’s upstream? from teachers? You know, right. Teacher Preparation is upstream from teachers, let’s know, can we look at that? Can we look at the individuals teaching teachers? Can we find out more about where this conversation lives within the curriculum, right, and how it lives within the curriculum, and what opportunities there might be coming from these other various areas of interest to, you know, if someone’s going into that and saying, you know, oh, it’s a lot to take this on, right? Then what might be opportunities for percept? perception shift, right, using things like educational ideas around clinical models using things in communication around framing theory, and reframing? And just kind of content, you know, looking at Teacher Credentialing and the teaching standards within our state of California, looking at neighboring institutions in our own institution and seeing, does the word inclusion come up in any of the course names? Or in any of the descriptions of within the bulletin? And what does it mean, if it does or doesn’t, which, by the way, is 0% of our institutions in Southern California? And to me, I have no doubt that the inclusion and an autism inclusion is discussed. But why why is it not then written? You know,
Lillian Nave 23:45
how are we going to know?
Jess Nerren 23:47
Right, it’s like an IEP, it all becomes optional. If it’s not written in the IEP, right? It just becomes like, oh, by the way, if you could do me a favor, right? Um, and or maybe it does, or maybe it’s, it’s left, um, you know, with a little bit more flexibility. And so looking at where is this institutionalized? Where could it be institutionalized more, and then after its institutionalization or not, what’s actually happening within that perception and action and work product and all the good things for professors who are teaching our teacher candidates and our future teachers, specifically within general education, So, k 12, multiple and single subject credential programs, and within professors of all ranks, so anything from someone who is an adjunct who teaches one class a year to someone that has been at an institution for, you know, 40 years has been doing this a really, really long time. And so getting information across these different areas About what are these conversations? What are these perceptions? What is the outcome of these perceptions and conversations? And how might there be an opportunity for social construction, you know, disability studies, to have the opportunity to, for that social construction to be done by individuals themselves, right. And so I know we might talk about that a little bit more later. But if we are talking about how to be of service to a population, and there are a you know, and I will repeat this till I’m blue in the face, there’s no doubt in my mind that every single person I’m going to find this part of the study wants to do this work. This is not like a gotcha thing. There’s no doubt in my mind that every single person is like, yes, yes, yes, this is important, I want to do it, I am all about it. Like we need to be better in these areas. I that’s what I think I’m going to, I believe in my heart, I’m going to find that. And I’m looking for that, right. I’m not looking for the converse of that. But I also want to provide and see what happens that I provide more opportunities for social construction alongside and with the population that is actually, you know, there’s social construction happening in those moments where we’re teaching about people with autism. So can we bring people with autism into that conversation while that social construction is happening? And then what is the outcome of that?
Lillian Nave 26:28
Wow, I’m so glad that somebody you with a history of public relations and PR, that’s your background is now going into how to help our teacher education programs, really rethink redesign, how we are teaching our teacher educators, right, and then our future teachers, right through k 12. And what also makes me think about too, is how many courses I had to become a college professor as far as how to teach and those amounts to zero, right? And how in the professor it right or in instructors, lectures, full professor, associate professors, many of those who’ve been teaching for a while didn’t have a how to teach course. Right? So we’re, we don’t have a how are you going to teach all of your students? How are you going to include all of your students think about the variety of your students, we just haven’t had that now, recently, I know, there are many graduate programs who are now adding, you know, pedagogy classes, you know, if you’re getting your PhD, you’re going to also learn how to teach. But that is not the majority, as far as I know. So I, I really appreciate that you are working so hard and uncovering what is available, and creating inroads to help in the pedagogy of how to teach teacher educators. Right. And then, and starting this ball rolling and changing these perceptions. And, you know, I of course, want to see it in all levels. And in all things, whether you’re teaching teachers, or you’re teaching biology, or history, or art history, or whatever, that we are teaching the whole student and the whole class and on all of those involved, I couldn’t think actually, I can’t think of a better person besides a PR person tackling this problem, so I’m really glad you are that this is something that’s important to you and your years, on your way. So I’m gonna keep you I’m gonna keep asking you about it over the years, you know,
Jess Nerren 28:35
ya know, and I’m really excited about it. And and it’s interesting, right? And it’s like, that’s why early on, I mentioned, like, it starts with that idea of expanding our idea of what PR is good for, right? If PR is only good to make a rich guy richer. Yeah, we can’t have this conversation. So we have to start bigger than that. And then we can go bigger than that, and then we can keep building on it. Um, and and I hear you about teacher preparation. Right. And that was one of the things that led me to this study as well. You know, and yes, I, I, you know, think, right. I’m a university instructor and, and my background is not in pedagogy. My background is not in classroom management. My background is not in grading for equity, or B.
Lillian Nave 29:23
None of that, none of it.
Jess Nerren 29:24
I had to pick all that up along the way. And we’re very fortunate, there’s a lot of professional development opportunities. You know, and so, I’m so thankful for the fact that that is there. But um, you know, a lot of the research that I was encountering in regards to teacher Ed and teacher preparation was that teachers in general education, they don’t always necessarily feel prepared to be of service to unique learners. And they feel like sometimes they want to do it again, like our teachers. You know, I come from private industry like I am. I’m like this. Every teacher I know is like a kinder, nicer, better person than me. And I’m very thankful for the amazing composition of lifelong educators. And I learned from them every single day. And, and I understand that, just like for anyone, if we don’t feel like that is our area of specialty. I mean, how many times a day do we refer someone? Oh, you know, that’s not what I research. But I know someone who does, like, let me send you let me send you an introduction email, right. And so our teachers and our new teachers in the classroom, if they feel like they’re not prepared for something, that’s a legitimate feeling. And then they might feel like that doesn’t live in their classroom, maybe that lives in special ed or BB that lives, you know, and then we start creating a system that then follows through beyond the school doors and beyond the school day, right? Yeah, my son was in middle school, I used to run a Autism Awareness Week, it is Middle School, very big places like 1000 1500 kids, whatnot. And the principal, the coolest human ever, he was like, you can just whatever you want to do during lunch, you can just do it, you know, here’s an area, just do the thing, you’re gonna have all 500 of this grade level at lunch all the way Oh, my God, yeah, I bring in my friends who are performers with autism, I would bring in these like full sensory experiences that have been developed by my ot friends who serve individuals with autism and collaboration with people with autism, I would bring in service animals. And we would have these really fun opportunities, you know, and and, and we would also have very informative opportunity. So a person with learning differences, he would bring in a disability timeline. And I learned from him, he was like, 19, at the time, he was a very young adult who was doing some amazing advocacy work. And it was a person who is a person of color as well. So he and he would put up the entire history in a kid friendly way of disability challenges, disability successes, disability breakthroughs, and milestones within that disability studies history, and engage with 500 students at once. And it was so interesting, because I would have, you know, my son and his friends there, and they’d be doing this thing. And so would people who are not identified or maybe an identified everyone, right, we’re all there together talking about this. And one of the most powerful conversations that would come up was, I would say, hey, do you know that there’s, there’s people with autism at your school? Do you know that you might study every day with people with autism at your school? middle school student? Yeah. And they’d go, yeah, I think I know that. I’m like, cool, great. I’m like, Where do you think that you see them? And they would say, oh, in that room over there, they’re all in that room over there. And that was the the county Ed room, they were like, that’s the only place where they are. And and it was so fascinating, because there would be people in that conversation, who stood next to that, they’d be like, their shoulder partner in a classroom. Yeah. Right. And they’re like, Oh, they don’t know, you know, they don’t know that I’m here. They don’t see the whole me. And, and of course, I mean, all confidentiality was honored. But at the same time, it was eye opening for me, right? Because our unique learners are not just the people over there, our unique learners are carrying on alongside us as we go through life every step of the way. And sometimes they don’t have the opportunity to feel completely seen, right. And so there’s just such an amazing opportunity to help like the population, you know, just to help the entire system, because if we’re not, that same system then gets replicated outside of that educational environment, which sadly, we see to Yes,
Lillian Nave 34:03
yeah. Oh, I love everything about your Autism Awareness Week. And I have learned to in my job, you know, interviewing people, and in my deep dive in UDL, also about disability studies, and how instructive that is for all of us. Yeah, and how that has influenced my teaching practice as well. And when you’re saying, you know, students not even recognizing their shoulder partner, I like that somebody who they’ve been working with is on the autism spectrum or a different learner. And they might not have realized that the giftedness that they saw, right, so some of those qualities about Oh, yeah, he always remembers these dates that I can never, you know, remember right. Hmm, wow, I kind of want him on my team. Because of these, you know, extra abilities are these things that I can point out are things that I don’t have that I would like to write that that this difference is such an attribute Right, right.
35:01
So it’s like, um, you know, because some people could argue, oh, true inclusion is not knowing, you know, that’s great. That’s a sign of success, you know, not knowing of the deficit. But you could also make an argument and take it much farther than that and say, you know, a lot of people who experienced the world in unique ways, you might just know, just by by looking at them, right. And then there’s this whole universe of hidden disabilities. And so you might not know, but assuming that it’s better not to know also assumes that it’s only a deficit, when really, there’s these amazing assets, too, right? I mean, my my son is, in addition to being a person with autism, he’s a cancer survivor. And he went through pediatric cancer with a smile on his face, he wanted to like laugh his way through the entire experience. And he brought out this amazing self talk where, you know, if only we could all pep talk ourselves through challenges the way that he did through that challenge. And, you know, that’s an asset, knowing that is an asset. It’s not a concealing of a deficit, right? That’s our own social construct. That’s our data. But no, saying, hey, you’re really good at, you know, remembering something, or you’ve got this wild knowledge of presidential history or whatever it might be, because of the unique person you are. And sometimes that can be especially powerful, right? And so that way, you know, the neurotypical peers don’t go through life thing, I never had contact with a person with autism, I did have contact with a person with autism, and they were really cool. And they helped me get an A!
Lillian Nave 36:38
we worked really well together, and I want
Jess Nerren 36:40
them on my team. And then when I’m on a hiring committee, one day, maybe I’ll think about that, or, you know, when I’m conducting a job interview, or thinking about internships, or whatever it might be, right, I mean, all these things. Yeah, they keep replicating. So it’s like, thinking about that upstream process, right? Where does that replication start? And how can I be of service to that, so that it might have these downstream effects?
Lillian Nave 37:05
Right. And I’ve been also interested in that, like hiring committees, like what are big companies to are finding that if they hire somebody with autism, and they do have to change hiring practices that are not interview dependent on how socially awkward or socially anxiety provoking an interview process is, but if it’s a different interview process that might take longer, and it might be over kind of competency playing with robotics, or something like that. And then they find that they get incredibly good team member candidates, who are excellent at things like pattern recognition, attention to detail, things that a neurotypical person, it passes by, you know, and finding out that there are really people who are incredibly good at certain jobs, but because our hiring practices are based on this social construct of Oh, this looks like a good guy or a good girl to work with. We miss a lot of what we need to know about and need to uncover and value. I love that you said assuming it’s better not to know means assuming it is a deficit. And that’s one of we need a PR whole campaign. Jessica. I’m ready for it. We’re gonna work on that. Yeah,
Jess Nerren 38:22
yeah. No, and, and it’s interesting. So there’s, um, there’s a particular industry that really shaped my perspective on this. They’re called the Northwest center. They’re a huge provider of in the Seattle and beyond area, they’ve now just recently expanded into Idaho. They’re a multi million dollar business across various service sectors, who actually practice like UDL and inclusion in the workspace, and they look at everything from birth to working adulthood, for unique individuals and their, their typical co workers, colleagues, students, etc. And we had the opportunity, you know, back in my publicist days, one of my clients was the keynote speaker for them. So we got to tour all their facilities there. I was like walking the shop floor and like, wow, looking at their hospitality and their childcare and all the things, we did the whole thing. And their biggest idea was, this is a representation of mutuality, that this is actually better and not just like in a Oh, look at us, we did the things. This is a good kind of way. We’re saying this is not a bolt on, this is a baked in. And it was it was a profound experience for me, that really shaped and formed my perspective because it really was for them. And it was it was unbelievable. So we met this one individual has the most chance, and they did all the packing for the Starbucks gift packs that year. They’re making this huge production line. They were making these whole you know, the things you see at Starbucks and the before time and You know, and at the very end, the person doing the product control was a person profoundly affected by autism. And he was checking hundreds of 1000s of these gift packs one by one by one for perfection. And the Northwest center was the only vendor who ever delivered every single gift path to actual perfection, 100% accuracy. And so Starbucks went back to them. They said, no one’s ever done this, like, in our mind, that’s not even possible, like, yeah, how, what was your secret? What did you do, and, you know, it’s like, big speed, feel, touch to talk about it, but they were like, it’s chance, you know, because he has an ability that’s stronger than anyone else, you could possibly do this. And that’s just such a beautiful thing. And it’s important, you know, it’s not that it’s not that we all are trying to be one thing, it’s that each one of us has something to bring if we give folks the opportunity. And so it’s really amazing. I,
Lillian Nave 41:05
thank you so much for sharing that story. And we will put in our resources for this episode about Northwest center. So people can find out more about it, and I didn’t know they exist. So I will be following up and finding out more.
Jess Nerren 41:20
Generally check them out. It’s really cool. And they have like models of how it’s economically benefit, you know, because people say, oh, but it’s gonna cost us money, or it’s gonna take us time, or it’s gonna, you know, be this logistical nightmare. And it’s like, No, no, it’s, it can actually be good business. Like, in addition to it being all these good things, it can actually just be good business. So then why would we not do this thing? That’s good. And all these other ways and good business? Yeah. Like it, you know, then we can defend it to our shareholders, we can defend it to our board, we can, you know, we can move it forward, not as this little like side project.
Lillian Nave 41:53
Right. And that’s why it’s a PR hurdle, isn’t it? We have for so long, considered difference as lesser? And how do we change that to difference is an asset. And you know, neuro neuro diversity is a strength as one of the previous episodes talking about that. And it’s something I I’m hoping that in higher ed, we are slowly, and I would love it to be quicker, but moving that needle to Whoa, look at what we can accomplish. We could we could have this 100% perfection that Starbucks never thought was even possible. And it makes me want to say you bet your cookies, you didn’t think it was possible because you weren’t thinking in this different model. Right? That, yeah, we have so many amazing people. And let’s leverage that diversity. And in our office, let’s leverage it in our classroom, let’s leverage it in our university. So it’s not this office over here for accommodation, or disability. It’s, this is who we are. And we value our students, and they’ve got amazing things to show us and to teach us and to provide in our academic community. Let’s all let’s all get on board.
Jess Nerren 43:14
Well, and it’s interesting, right? I mean, I was recently talking with a faculty member who’s an identified person with autism. And he was sharing with me that he has a dream of having like a student center, like just like how there are students centers for various groups on campus having Student Center for students identified on campus, right, you know, and the students, Associated Students center on the theme. And I thought, What a powerful idea and what an unmet need, right? I mean, I would love for folks to not you know, I, my son is 15. Right? He’s looking at colleges right now. So I would love for him not to feel alone when he goes to school, like, oh, everyone has their community except me. Like, I don’t want them to feel that I want them to feel like everyone has their community. And so do I. Yeah. And so just these ideas of like, well, how can that infrastructure exists? Is is important, and and UDL plays a huge role in that, right? Because if there’s only one kind of person, if there’s only one kind of learner, then my son’s never going to be that person. Right? If there’s lots of different kinds of people, and there’s lots of different kinds of learners, then he’s going to be among those lots of different kinds of people and learners.
Lillian Nave 44:24
Yes. And he’ll be able to share his his awesomeness with theirs and and everybody can learn from each other.
44:30
It’s great, great.
Lillian Nave 44:31
So okay, so you have a lot of great ideas. I’m going to try to get to some of them too, about how UDL how does that figure into your findings and recommendations for Gen Ed, Teacher Education and credentialing?
Jess Nerren 44:43
Yes. So um, this was part of kind of connecting this back to the you know, the problem of practice the theory and then the the practical like, Well, here’s why you need this anyways, right. This is part of the argument of you have to show UDL To be a teacher in the state of California, there are learning of there’s a free, there’s credentialing standards, and they have got like an alphabet soup of things. But there’s credentialing standards about UDL planning and about UDL execution within the teacher credentialing standards for gen ed teachers within the state of California. And so that’s the hook. That’s the tie in, right. There’s not a credentialing standard for Gen Ed, teacher for autism inclusion, right? Because what does that mean? each teacher is different, each classroom is different. That might be a lot of different things, a lot of different ways. But there are UDL requirements when you’re planning your courses. And when you’re executing your courses, you have to show you the outline, you have to defend it. And so the UDL is part of a critical tie in between the idea that autism inclusion, and looking at how that gets taught to our teacher candidates, and why it matters and why it might lead to success rates in credentialing and why it has to be in the curriculum because of the credential standards, and then how that might play out downstream. Right? Because it’s like, you could probably do it as an abstraction, but you could also do it in collaboration with with people who live this life every single day. And so the UDL part is because it’s in the credentialing standards. The entire thing honestly hinges on UDL. If the UDL standard wasn’t there, then we would get back to the bolt on right. Oh, it would be nice. It has to be there. You can’t be a teacher without UDL. So here’s a way to help make life easier for the folks delivering that UDL standard, hopefully. Great.
Lillian Nave 46:51
Oh, wow, that sounds fantastic. I’m so glad you’re you’re doing this research. You’re doing so much with the data you’re collecting now. So I wanted to know if you can tell me a little bit about that data and the self, that you’re collecting self representation in social constructs around ability and disability and who you’re working with and what you are finding out?
Jess Nerren 47:16
Yes. Okay. So it’s a multi phase study, using focus groups as part of a intrinsic embedded case study design. And within that, the second focus group actually brings in adults with autism to be part of the conversation with our focus group participants. Okay, so I am in data collection now. I have completed IRB, I’m doing informed my informed consent right now and scheduling the first focus group. But when we get to the second focus group, what’s going to happen is, my friends at the miracle project, I was one of their founding board members, I love them, love them, love them. Alain Hall is like a giant in the world of the autism community. She was featured on two Emmy Award winning HBO documentaries. She herself is an autism parent. I met her a long, long, long ago at a conference and we said, Oh my gosh, we’re gonna do some cool stuff together. Like we knew there’s there. There’s like a simpatico there. And so when I reached out to her, and I said, Would you be willing, um, she jumped at the opportunity. So she’s involved in two ways. One way is that I talk with her about this, almost like as a autism community, IRB like touchstone, like the equivalent in like, tribal credit, like going to tribal council, right? Okay. Oh, hey, I made sure with my institution, that the institution’s fine with this, but I want to have a conversation with the community to make sure that this also feels like research with the community, not research on on the community, this needs to be beneficial. So for instance, you know, she can bring anyone to that meeting, they can ask any questions, if someone’s like, wait a minute, I got a problem with this, I will go back to IRB just for them to do edits accordingly. Even though it’ll, it’ll delay my degree, I will, I will do that. And it’s important to me to do because of exactly what we just talked about. So that’s the first role that she plays. And then the second role she plays in the in the second focus group, one of her social, I believe it’s an adult social skills class will come and hang out in the focus group. So they are not the study participants. They’re a an existing meeting group. That’s part of the miracle project, a little backstory on the miracle project. They’re Performing Arts, nonprofit for individuals with autism. So even my performers that with autism that came to my Autism Awareness Week that I was sharing with you there The Miracle project, there’s individuals I know who rap impeccably, and are less verbal, in words than they are in rapping, there are individuals that are part of the group, there’s like company troops, who are on primetime TV shows now and are picked up by major, you know, casting agencies to be self represented individuals with autism in shows on, you know, ABC and NBC. And so they have been working around self representation within the community, right, because I mean, there’s, there are individuals without disability that play individuals with disability every single day, on in entertainment, media, TV, etc. and that there’s opportunity there in the future as well. And the miracle project is about providing opportunities for individuals to see folks like themselves, you know, on the big screen and on the small screen, and about, including lots of people together, and about bringing forth the best in someone, whatever that might be, right. In addition to these amazing Performing Arts and Social skills, and they do like a, like a Jewish specific one, they do a million things. They’re amazing. I could go on about them forever. But I learned from Elena Elena is the coolest person ever, definitely look her up, I can provide you links for resources as well, we’ll
Lillian Nave 51:29
put it definitely in the resources,
Jess Nerren 51:31
awesome. Um, and so her pre existing group will just come and hang out in our focus group and share their hopes and dreams and aspirations. And part of it is connected to the idea, the scholarly idea of the potluck. And that folks, can there can be, you know, we’re okay, if anyone is capable of holding two ideas that conflict in our head at the same time, why not it be academia, right? Why not? It’d be academics. And so we could have someone who is profoundly disabled and profoundly talented. At the same time, we could have someone who needs extra assistance, and, you know, who, you know, has these incredible hopes and dreams and aspirations for the future and is working for them every single day. And so hearing the nuance of what, who a person is and having that conversation, and opening the door for that in a potluck is the purpose of that second focus group, and then having the opportunity to reflect within the focus group on what it was like to have those conversations?
Lillian Nave 52:35
Oh, that’s fantastic, wow, we are gonna list all of these resources, so people can find out a little bit more about each one that you’re talking about. And I know that’s ideas about who is playing characters on TV, especially neurodiverse characters has been I’ve seen it a lot, maybe my antenna is tuned to it, but especially about non speaking autistic people as well are people with autism and, and making, I think there was a celebrity who made a recent movie about it, but didn’t, didn’t do the kind of research you’re doing, which is talking to people to represent that. And so I will, I’ll put in the resources, I think some of the, the idea is to about people with autism, who are then creating their own, you know, creative projects. Because it’s, it’s, you know, it’s not, you can’t speak for us it’s speak, you know, we will speak for us don’t have anybody else speak for us that sort of idea.
Jess Nerren 53:40
Right. And I need to acknowledge that too, right. So I am a parent of an individual with autism. So I’m like a satellite on the periphery of a world that is not my world, right? Like, I am a supporting role to a person who is a member of that world. And so I always make it a point to acknowledge that, because, like, the communities, the sub communities within the autism community are very polarized, you know, individuals are stressed, there can be a lot of conflict. And so, I do what I can to acknowledge that I am not I, you know, I try not to say, autism parent. And I do everything I can to make it a point to stop and say, I am not a member of this community. I play a supporting role to a person that I love who is a member of this community.
Lillian Nave 54:31
Yeah. Right. And I appreciate that so much too. And, and even before we talked, you know, you get permission from your son to be, you know, can’t just be talking about somebody you want his input to, about, you know, what if you’re going to talk on the podcast, so I think that’s also you know, really important that we are taking our cues from the people who we’re working with and because we value their opinion and, and who they are as people
Jess Nerren 54:59
you Yes, yes, yes, yes. And interestingly, he, uh, not because of anything I did, but he wants to grow up to be a teacher, you know. And so, like, to him, he’s always like, yeah, go and have the conversations because it might make it better. And that would be great. And so absolutely right. I mean, we all have the right to be a participant in our own social construction. And that applies to him. I did get his permission before talking about him today. You know, we we joked about it. I was like, Oh, you know, well, we’ll talk about your dog, your best friend. So shout out to Kennedy. Yeah, absolutely. That That stuff is really important. I mean, it’s not, it’s not on or about him, either. It’s, it’s with him. It’s in collaboration with members of the community that my goal is to play a supporting role to bring something to in collaboration with.
Lillian Nave 55:56
Yeah, and you know, we’ve already talked about your son Royce, a good bit today. And one of the, I think, it still merits a question too, about, tell me about how amazing his cycling journey is what he’s doing now, because I have a small connection to ram and probably our listeners out east are not as familiar with RAM, which is our ATM race across America. If I’m saying that, right, yeah, yeah. But I had a good friend shout out to my friend Marshall Nord, who did it a few years ago, and he’s a filmmaker and did a film about you’re riding a bike a bazillion hours, and it’s a race. It’s like Cannonball Run, but on bikes. And your son is doing a similar thing. And he’s only 15 some sort of ridiculous amount of riding a bike that I could never, ever do.
Jess Nerren 56:50
Yes. So he is an endurance athlete. He likes what they call the pain cave and cycling. It’s like that moment where you can’t go on but you keep going on and then you just continue going on. And so that is his his specialty on the bike is. He’s like, I’m not a sprinter. The shorter the race, the worse I do, but the longer the race, I can keep going when everyone else can’t take it no more. And so he did the virtual race across the west. I mean, of course, right now, everything’s virtual. So he, he, he did it in an adjacent room in my house, with a screen, showing him writing in various locations. I was his support vehicle. So I was running to and from the kitchen, providing him food and drink. And he did. The race was 925 miles, that he had a technical glitch. So he had the pleasure of doing a couple bonus miles. So he didn’t 957 miles, 10 days. So every day, he would get up and do a century. And then the next day, he would get up and do a century again. And then the next day, he would do it again. And it was really cool to see. It was a it was funny, because the day after he finished he was like, hey, so let’s go for a bike ride.
Lillian Nave 58:16
You’re like, I’m tired from watching you.
Jess Nerren 58:18
Yeah, I’m like, I’ve just been doing labs like to and from the kitchen. And I’ve done Yeah, um, but he he did this amazing thing. I tell him he’s winning COVID he has some some cool stuff to show for it. I believe he was one of the youngest people to do something like that solo. It’s different in virtual than the in person one the in person ones way harder anyone doing it in person was it’s not even remotely the same. Like this is the virtual one was was raw light at but he just loves going for that long haul. And he’d been a cyclist, a competitive cyclist since he was nine. And His hair was still growing back in from chemo. And he was on the bike joining a bike team and on a cute little miniature road bike. And it’s just been something that’s been very empowering to him, no matter, you know, what might be his unique learning styles. A bike is very democratic, right? It’s what can you put out on the pedal? What can you leave out there on the road. And so he’s gotten a feeling of empowerment, and abilities through this activity that he does. And it’s been something really, really cool and really special. And the cycling itself does not always have a great history in terms of inclusion. In fact, it actually has a very exclusionary history. So he’s had the great pleasure of of helping to be part of the more inclusive conversation within the sport as well which has been great.
Lillian Nave 59:57
Wow, he’s already changing. perceptions to man. Having a mom who’s a PR person is really helpful. I think
Jess Nerren 1:00:06
I’m not a momager No, no, no, no, no. You’re not my client. He is my kid. And I love him. And I accept him. And I just want him to have his happiest best life, whatever that looks like,
Lillian Nave 1:00:18
that’s so great. That’s awesome. Yeah, I, the one small bit that I did to help somebody on that kind of race is staying up all night, following along in a car, on bike, you know, paths or, you know, on the road, in South Carolina, when I end this morning, my best friend’s husband, and I would do it for them. But then I thought, I will never do that. Again, that was a lot. And then I wasn’t even on a bike, I was a passenger, most of the time. We’re in the support vehicle. And so it’s incredible endurance, incredible endurance work for these athletes.
Jess Nerren 1:00:54
You cannot. And you know, his voice has been really lucky. He’s got had some great coaches and some great for the ultra endurance coach that he worked with. He actually helped the first solo hand cyclists do race across America. And he himself, he was a participant in Race Across America as a solo, as well. And so, um, there, there’s like these little pockets of people just kind of opening the door a little bit. And we’ve been lucky enough to connect with some of them. If anyone is is hearing this and going, wait, I want to know more, I’m happy to share across my contact, or to make any of these resources available as well. Because it just helps it helps to know that no matter, you know, what your unique experience of the world is that there’s, there’s a community for you, you know, I feel honored to be part of this podcast. And I feel like there’s more of a community for me in my research right now. You know, and same for my son, like he feels like there’s a community for him. And that that’s something that can guide someone through a more positive life, you know, even in times of hardship when you’re learning in the corner of your living room.
Lillian Nave 1:02:11
Yeah. Wow. So I am so glad you agreed to to talk to me about what you’re doing both as a professor as a lecturer at Cal State University, San Bernardino, and also your research as a doctoral student, and your connection to your personal connection that has brought a lot of insight to, to help all of us to understand, flip the script, and think about how we all can be better teachers. So thank you so much. I feel like there’s there’s a whole nother episode I need to talk to you about. And so I think maybe after you your dissertation, we’re gonna like do Part Two or something like that. I
Jess Nerren 1:02:51
think I would love that. That would be amazing.
Lillian Nave 1:02:54
Yeah. All right. Well, thank you so much, Jess, I am so glad I got a chance to find you. stalk you. Thanks for answering my questions in my emails.
Jess Nerren 1:03:05
Thank you for finding me on social media, I really appreciate it you have, you know, we were talking before the show, not every not every glimpse into the world of social media is always a positive one. So you made social even far more positive for music, communications, you know, person. So that’s something really special, I appreciate it. This is a bright side to say, you know what, I found people that share an interest with me through putting a post out there and putting myself out there. So that was a gift that you gave to me as well as inviting me onto your show. So thank you so, so much.
Lillian Nave 1:03:43
Thank you so much. And we’ll have all of the ways to contact you too. If people if something that our conversation has sparked in them, they can contact you and we’ll have that on our resources. And you might be hearing from some more folks who are interested in what you’re doing.
Jess Nerren 1:03:58
I would love that. That would be amazing.
Lillian Nave 1:04:01
Great, thanks.
1:04:02
Thank you.
Lillian Nave 1:04:15
You can follow the think UDL podcast on Facebook, Twitter and Instagram to find out when new episodes will be released, and also see transcripts and additional materials at the think udl.org website. The think UDL podcast is made possible by college star. The star stands for supporting transition, access and retention in post secondary settings, and the website provides free resources and instructional aides based on UDL principles. If you’d like to know more, go to the college star.org website. Additional support for the podcast is made possible by Appalachian State University where if you call it app elation. I’ll throw in Appalachia. The music on the podcast was performed by the Odyssey quartet comprised of Rex Shepherd, David Pdeficitate, Bill Folwell and Jose Coachez our sound engineer is Tanner Jones and I am your host, Lillian Nave. Thank you for joining us on the think UDL podcast.