Paving the Way for Equity, Inclusion, and Diversity in Curriculums

Big changes don’t happen overnight. Instead, it takes little day-to-day actions to bring forth change in massive ways. Dr. Gail Chodron is on a mission to bring forth change by improving access to integrated systems for children with an autism spectrum disorder. She is the training director for the Wisconsin LEND and the coordinator of community training and technical assistance. She’s also a parent of a young autistic adult and has a passion for applied research and training as it relates to her mission. 

Today, Jeiri chats with Gail about what motivates her to incorporate equity, inclusion, and diversity into training curriculums. Gail also shares an important truth on why it isn’t the job of marginalized individuals to bring to light what others are excluding. However, she also discusses the importance of sharing lived experiences when it comes to advocacy and self-advocacy work.

Their discussion taps into the importance of interdisciplinary skills when it comes to fighting for change between the medical and social models. Gail shares the two changes that she believes are important when it comes to improving LEND programs, including bringing together a set of different disciplines.

If you’re a trailblazer and change-maker within your own space, this episode with Gail will inspire you with small but actionable steps that you can take in your own life to move the needle forward. Tune in to this important discussion about change, advocacy, and diversity.


View all episodes and transcripts at http://www.aucd.org/podcast


This episode was funded in part by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.

This podcast episode is provided in partial fulfillment of tasks outlined in a cooperative agreement (#UA5MC11068) between AUCD and the Maternal and Child Health Bureau (MCHB). The contents do not necessarily reflect the views or policies of MCHB, the Health Resources Services Administration, U.S. Department of Health and Human Services, or the U.S. Government.

Produced by Adode Media; a full-service podcast production agency.

Transcript

Welcome to AUCD network narratives, where we share real stories from our members. I'm your host, Jeiri Flores advocacy specialist at the strong center for developmental disabilities, and the co-chair for the council on leadership and advocacy. Join us as we hear from inspiringly within our network working to make a change.

Jeiri Flores: We are here today with Dr. Gail Chodron, who is the training director for the Wisconsin LEND and the coordinator of community training and technical assistance for the UCEDD, she's a parent of a young autistic adult and has a passion for applied research in training aimed at improving access to integrated systems for children with autism spectrum disorder. Thank you for being here today with us. 

Dr. Gail Chodron: Yeah. Good to be with you, JD.  

Jeiri Flores: So today I really wanted to talk to you about the work that you did to really incorporate equity, diversity, and inclusion into training curriculums. What are some of your motivations to make that happen? 

Dr. Gail Chodron: Gosh, well, it feels really personal to me actually right from the get-go. So, you know, the first thing that comes to my mind is being a trainee. It was about 14 years ago. I entered the LEND pro. I was a parent trainee and I also happened to have training in public health. So I could relate to the, I don't know, I could have been in the professional identity too, I guess, but I came in as a parent trainee and I noticed right away that, you know, the LEND program sort of designed thinking that it's healthcare professionals and other professionals. So a lot of the language was around as if you were going to be a professional, right. And work with people in a certain way. And you know, that's a small way, right at the beginning that I felt like, gosh, I don't entirely feel like I belong here. And no one meant it. No one was kind of being like, you don't belong, but it just seemed like it wasn't necessary Per-say. I started on the staff pretty quickly after doing the training. So right away, I wanted to take a look at the training program in terms of how do we just make sure that everyone who's around that table feels like they belong around that table and it's about them, right? That's one thing right from the beginning. And that's about inclusion. It's about inclusion as a coming in with a particular identity of the parent, you know, and then later we incorporated that for self-advocates who were coming in as trainees, but that's part of what made it personal for me. And there's also a spirit in that that I think is easy to then carry that spirit to other or issues, right. Or other identities and say, this, we want everyone to step in and feel like they have that same sense of I'm meant to be here. And I can see that I belong here and it's not my responsibility to change the words and adjust the things and think through for myself how this might apply to me. Can we make the program, so it applies to everyone right away. 

Jeiri Flores: It makes me think of my experience as a LEND trainee because I definitely felt like I was going to have some sort of conflict. I'm like, what am I doing here? You know, I'm not a doctor, you know, I only have a bachelor's I'm like these people are pursuing master's PhDs and all of these things. I'm like, what do I know? What am I doing in this space? And it was really hard to find your footing and like, all right, well, this is what I bring to the table and this is why they keep me around. And the research component was really hard for me, cause I was like, I don't know any of this. Like I would show up and I would just be like, I don't and I studied sociology. So like, what I cared about was not what the doctors in the room were looking for, you know, to me, race, class, gender are the top things and that wasn't you know, their goal. So for me, it was really a struggle the first year and even the second year, but I really have always been like, okay, well I'm just going to be really truthful and you could take it or you could leave it. And then however that works for this program, hopefully, it does. Cause even originally when they asked me to come back as a second year, our LEND director at the time, was like, can I speak to you after class? And I was like, oh man, I messed up. Like, I was like, oh man, I did it. I knew I was going to mess this up. I knew I did something. And so it was like, so worrisome. And so he goes I think depending on how the funding works, I think we're going to bring you back for another year. And I was like, oh, oh, so this is okay, this feels better. But I think that what you're saying makes so much sense and it rings true to my experience. I think even now I've been in our LEND program for maybe eight years and I still feel sometimes out of place depending on the conversation. But I think one of the pieces that you said that was really important is that it's not my job to bring to light what they don't know. And I think that we struggle with that across the network, not just in the LEND programs, I would say as a self-advocate, I think sometimes people think it is our job to kind of bring that to light because we're in the room. 

Dr. Gail Chodron: It's your job and it's not your job, right? Because it's like, when it's your job, when everyone puts that burden on us, for whatever identity we're coming to the table with, like it's so much work over and over and over again, it's your job. And it's like, can you also just have the right to be in a leadership training program where you are getting the rest of what everyone else is getting? I'm a member of the LGBT community. My autistic child is a member of the LGBT community. I get that there are things I experience from this identity where I feel not included or a microaggression or whatever it might be. And I have to realize, I don't want it to be my work all the time to say, hey, but at the same time, I'm like, okay, if I don't in certain instances like you're not going to think different. You're not going to know different. So, it is a weird thing, isn't it? 

Jeiri Flores: It's such a conundrum, right? Because you also want to be protective of the other fellows in the room. so, for me, in particular, I can remember times where our programs are predominantly white. So, when there are other people of color, I'm a little more protective. And when we are talking about cultural humility and other things like that, I'm like, okay, what you won't do is ask the people of color in the room to give you examples of how racism works for them. You know what I mean? Like what you won't do is approach the only black woman in the room and ask like, you know what I mean? And so, I struggle with that because now you're butting heads with some of the faculty members, because you're like, that was wrong. I overpour so that my fellows don't over-pour. And so that, especially in the advocacy realm, because some of the other fellows really lean on the family advocate and the self-advocate for that personal lived experience, depending on what we're talking about, I'm like, okay, it's, you know, I have to pinch-hit because I don't want my fellows to feel like they have to over pour. But something that I had to do, I had to have a conversation with our LEND director. Like, listen, I don't think you're acknowledging how much more the advocacy discipline has to overpour emotionally in this space and how taxing it is for us to come here every Friday and have to stand up and say something because if we don't, then where is that LEND experience being populated from, we're not talking about research articles, we're talking about real life and how this really feels. And if we don't share how we ensuring that our fellows are actually learning from us is to be better providers. But then it's always back to, if not you, then who?  

Dr. Gail Chodron: Part of what we talk about in terms of interdisciplinary. When we think about gaining interdisciplinary skills, we think about the fact that you might be an OT, but you kind of understand what your psychologist colleague or your parent leader colleague is, what they care about, what their scope of work is, what they would be thinking about. And so like to me, I think about LEND as all these disciplines, including family and self-advocate. And like we have that onus on us to understand our teammates, their discipline, their perspective, and what they might be concerned about or thinking about too, hopefully, in LEND, we are really advancing that spirit of just understanding that so people could leave the people who were in the training cohort with you could walk away and say, oh, I hear JD in my head. She would say, what we should be thinking about, I'm going to bring it. I am going to bring it. 

Jeiri Flores: And I think that that also brings up the age-old debate of the medical model versus the social model. Because when we're trying to create these changes, we are fighting against the medical model that is built into the training of an OT of a PT of a speech pathologist. And so how do we push that? So like for me, I push like evaluations. I'm like be careful about the words that you say, how you write these evaluations because they live so long in the lives of people with disabilities. And we don't have any control over this. if you don't learn anything else for me understand that, the words you say and how you say them matter, you know, it's that constant struggle. they are like, well, okay, I got to do my job though, JD. So I got to, you know, I have to get what they need, so how do I do that, but also respect them? And so then, you know, it becomes a whole other conversation, especially as you're trying to just really get them to understand like the real-life experience. Because not that I I'm like the poster child for it, but you know, I have some experience. And so how can you learn from me in that way? I think it's just a constant give and take like push-pull type of thing. And it also depends on the cohort. I think the foundational reasons as to why LEND exist are very important. And I wouldn't want to minimize that. What do you think some of your challenges have been? 

Dr. Gail Chodron: Two things come to my mind. One is something that I really think we can do immediately, no matter what, in any of our LEND programs, it's something that I try to live by. The other is more looking at examples where we can press integrating diversity inclusion and equity more. So, okay, The first one. So for one thing, I feel like it's very valuable to view the LEND program as bringing together a set of different disciplines, a set of different emerging leaders around a table. I tell them, once you sit down at this table that is LEND, whether it's your small team or the big LEND team, you are equal, you are one person with one set of expertise, lived experience, and knowledge who is here. Because you care about the lives of children with disabilities, adults with disabilities, and their families. And you can play a role in making sure that they have meaningful lives, right? and that they have health and wellbeing in the way that matters to them. When I set the table in that way, everyone's equal, everyone is doing that same job. It just happens to be that one person comes with a toolkit that is genetic counseling. And maybe they're also a sibling of someone with a disability. The next person comes to the table with a toolkit of lived experience as a parent, some of our parent trainees are community health workers. And they bring that in their toolkit. You have someone else who is learning to be an OT, someone else who's a working psychiatrist. So you know, we've got differences in terms of lived experience. We've got differences in terms of discipline. We've got differences in terms of people who are a first-year master student versus they're already a professional in the community. And I say, fine, bring it, put it in your toolkit though, It doesn't make anyone better than anybody else. And so come to this program with the spirit that you are at the table for the same reason, and then I'm going to switch analogies, and then it becomes stone soup. I love the stone soup analogy. And then it's just, we are making this soup together. We're making this situation, which is a world in which children and adults with disabilities and their families have what they need in the way that they won't need it. And that definition has to come from them. And we're all just here to help be part of that team. I think that immediately equalizes immediately raises everybody up. immediately puts the focus off of any one of the disciplines of the medical model versus social model and says, we're working on this together, right? We can take the tools of the medical field. We can take the tools of the social model and learn from them. And then when you come back to that example that you said about, you were talking about the push in the pull and the language, right. And the language that lives it, then it becomes a different issue. because you're saying, Hey, one of the problems that exist, one of the challenges is there is medicalized language. And when that language enters this kind of field or a document, it has a long-lasting impact, Right? And then you say, I know that because I've seen that from my experience. And then your teammate, your partner in this joint endeavor can say, wow, that's good to know. And I'm in a pickle because I have to use a certain language because of billing. And so let's think about this together. What are ways where we could make a difference? So they're able to inform us, Hey, I can't actually change that language I'm forced to use it. You can say, well, gee, that is a pickle. You know, well, let's say, you know, what if you talk about it in a certain way to them, what if you explained it in a certain way? What if you go talk to your health administrators to say, Hey, does it actually have to be this language, and let's change this policy, right? You can just work together to say what's changeable and what's not. So the second thing I think is critical is that's not a panacea, that doesn't fix everything. That's not enough in itself, right? That there are ways in which we need to focus on. Are we promoting a diverse trainee cohort? Do we have diverse faculty? Are we bringing in curriculum and materials that are developed by a diversity of voices and perspectives? Once we have diversity tackled or at least we're working on it, are we inclusive? Just cause there's a diverse cohort doesn't mean that people feel included. And then it's in terms of curriculum, it's like the content are we bringing in content that's developed by a range of voices from a range of perspectives that challenges people in different ways. Are we addressing racism, ableism head-on, right? Are we introducing the social model? Are we bringing in data around equity and failures to achieve health equity? And again, are we bringing in diverse voices on how we're failing to do that or how we're succeeding? So that part to me is hard in a state like Wisconsin, which is, you know, very white. 

Jeiri Flores: I was just thinking that, but I didn't want to say I was like, that sounds like a lot to bring in. I live in diversity, so it's a little, but I think of often of Wisconsin and like Vermont and I'm like, these are like really, really white spots. And so like to hear you're actively working for all this diversity and like where she's finding it. I mean, cause even here in Rochester, our programs are predominantly white. Like our fellows are predominantly and the people who come in terms of guest speaking and stuff like that, sometimes are also predominantly white. So like there's only very much those sprinkles of people who happen to not be part of the majority. And I think even disability-wise like I think that sometimes God would love to have someone with a cognitive disability by my fellow one year. But I know that my program is not prepared to do them justice. You know, I'm not prepared to subject someone, you know, to be my Guinea pig. Like until I feel like we can really provide the support they will need to really appreciate and not just complete, but to thrive in this program. So I just feel like that sounds like a lot of work.  

Dr. Gail Chodron: I think it's going to be the work for them, I figure I'll be here another 19 years. I mean, I think it'll be perpetually ongoing. I think I approach it in the way of not have we failed or have we succeeded? You know, it's not a binary. It's not like, got it, Don't got it. it's like, this is the work. It'll be the work forever. What can I do today to advance this? What can I do in this domain to advance this? And then the world changes around us. I'll tell on myself here, which is, you know, I may be more of an elder at this point in the LGBT community. Or just old and outdated. But when I was younger it was LGB you know, and then more letters got added and more and more letters. And so, you know, I see the LGBTQIA+, you know, initially, I was like, oh my gosh, these young people, how many letters you are going to, I can't keep up. I'm part of the community and I'm older. And so it's new to me and that's learning for me. What do these mean? What do these mean to people? What is this about? What am I missing? So there's not an endpoint. We always have to be learning. right? So I think that keeps me going. And so one of the other things JD is let's say that we get more diversity in the presenters. So we worked on that. Well then some of our advisory group, gave us feedback and said, Hey, you got to be careful because you can't just be bringing in people of color as the people who are the service recipients, but all the expert presenters are the white faculty or something. And you're like, ah, good point and then it's, well, we clearly haven't done the work to go find the folks who are the expert voices in diverse communities and a broader of communities that communities themselves are not diverse or individuals not diverse. So then you do that work, right? And you just say, how are we doing now? We've increased the diversity of our trainee cohort, this year it is far less diverse, but last year was our, probably our best ever. And we had a cohort that was just committed across the board to social justice and wanting to dig into that and do that work. instead of pointing at the moment too, were we successful or not at getting a diverse training cohort, I want to point to something different, which is once we have the most diverse cohort we did, I'm talking to trainees and saying, well, okay, what's working well and what's not? what else could we be doing? Who do you think we're missing in terms of recruiting for the program? What do you see us missing in terms of the presenters and everything else? So to me, trainees, grads are right there as people who should be informing how's this working, how could we shape this in the future? What could we be doing? Help us shape the program, in that way, every step you make and when you have a little success or a big success, use that as the next launching board. But I think we find ourselves in particular contexts and settings and spaces and programs, and the work will always be the same. Given this context, these resources, these constraints, how do we move it forward? Because the end place is everybody, no matter who you are, can bring what you have to the stone soup, right? And say, we're going to work on this together. every day we assess, how are we failing to make that a possibility.

Jeiri Flores: For sure. I mean, that makes sense. to me, I think of, you know, the ways in which I tried to push to change my program and to push the way the conversations were happening. And the first time we had a session on just advocacy, I was super excited. I was like, oh, we're going to make this work. I found this YouTube video that was like a Ted Talk. And I was like, I'm going to build off this Ted talk. Don't worry about it. I'm going to figure this out. And then I reached out to some folks who I had admired from the community who were doing advocacy work and I'll pay them out of my pocket cause you know, some programs don't have money and they didn't know how to do it. And I was like, I just want them, so I'm going to make it work. And they came in and they did an amazing job. And so now this has become like a fixture in our program. And, and so then last year I was like, you know what? Advocacy happens everywhere. It doesn't just happen in the DD realm. I called all these different advocates that like weren't related to disability at all. So I reached out to a teacher who worked in social justice and she did restorative justice practices. And so she came in and I reached out to a guy who worked in the schools and did mediations. And I was like, Ooh, you're an advocate, This works. And then I reached out to another woman who owned a restaurant and who at the time was really pushing because the laws were so stringent and then like they were losing money because they were a small business, but the state was treating them like a huge franchise. And so they're like, you know, I'm not going to survive the pandemic with this. So, they had been really vocal all over the place. She was also a woman-owned business. So she had started a nonprofit for other women-owned businesses. I'm like, this is advocacy in the midst. And so I brought all these folks in to do a panel and I'm like, well, this is what our advocacy also looks like all over the place. So I think that you're right, we continue to grow and change the ways that we do business, you know, in this space as we learn. So I guess my last question to you really would be, what's something that you would pass on to someone who is trying to blaze a trail in their own right, In their own space, in their own LEND program. 

Dr. Gail Chodron: I think if I had to say one thing, I would go back to what I said about viewing the LEND program as this single table where you're inviting everyone and really setting that tone that we're in this together and adopting that yourself. I think that's really critical. I think another thing I wish everyone understood, I wish every individual understood that there are perspectives that we bring that are limited and limiting and I mean perspectives, not in an individual level, but that at a more disciplined level or institutional level. there is what you might call a medical is right. Or a medical perspective, a medical worldview. And there are other worldviews, right. Other gazes. And that those, they're all limited and they impose some of their limitations on others. So when I came into LEND as a parent, I came into a program that felt like it had a very clinical and medical gaze. That's how it felt to me. And it had limits that kind of constrained what I could contribute or what I thought was possible. And I think the nature of that gaze or perspective is that we're not always aware of what we're bringing. It's like fish swim in the water, and they don't realize they're in the water, right. Or whatever that analogy is as that metaphor. We're not necessarily cognizant of the water we're swimming in or the air we're breathing in. So I think it's just so critical for people to understand that there are these limited perspectives, whether it is heteronormative or white-dominated perspective or a more elite or educated perspective or versus just everyday community knowledge, whatever it is, there are all these perspectives. And I don't think it's possible to get to a place where you're free of those entirely. So I think it's necessary. I have concluded it's necessary to commit to the work of always challenging yourself in terms and your program in terms of the perspective that you're bringing and what is it shaped by. What are the limits that it is espousing? What are the limits it's imposing and are they helping or not? Are they getting in the way, how are they getting in the way? So first make a commitment to everyone's around the table and we're making this stone soup period end of the story. And then committing to getting rid of anything, being willing to get rid of anything that's not helping do that. Being committed to challenging anything that gets in the way of me, that's the best we can do. Maybe I'm wrong. I might in five years come back and say, oh, JD, get rid of everything I said. I got it. I got it now, this isn't necessary. Not sufficient but necessary and maybe the best we can ever do. 

Jeiri Flores: I mean, I think it's a big task. So I think that we won't ever have all the answers anyway. So I think that that's great. And thank you so much for being with us here today and we appreciate you telling us a piece of your journey and sharing that with us.  

Dr. Gail Chodron: It's great to be with you, JD. Thank you for doing this. 

Thank you for tuning in to AUCD network narratives. If this story has inspired you to make a change at your center or program, use the link in our show notes for resources and tools to help you lead on. We'd love to connect with you. So visit the AUCD website and click on the submit your story button at the top. We hope to hear from you soon.