The Art of Advocacy: Charmaine Thaner on Building Inclusive Schools ~ 1009

Tim Villegas
Okay, real quick before we get into our interview with our wonderful friend and inclusion advocate, Charmaine Thaner. How’s everybody doing? It was election day in the United States on Tuesday. And let’s be honest, it has been a little bit stressful. But I’ve got a quick fix. Hey Siri. Call 707-873-7862.

SIRI
Calling plus 1-707-873-7862.

Tim Villegas
OK, check this out.

Child Voice
Hi. Welcome to pep talk, a public art project by Westside school [Spanish]. Please listen to the following options for encouraging messages.

Tim Villegas
All right.

Child Voice
If you’re feeling mad, frustrated or nervous, press one.

Tim Villegas
Mmmm, that one.

Child Voice
When you’re feeling mad, you should take three deep breaths and think of things that make you happy. The thing that makes me happy is when I think of happy things will happen in the future, like going to a friend’s house or a cousin’s house, bye. If you’re frustrated, just take five minutes off. You’re frustrated, you can always go to your bedroom, punch a pillow or cry on it, and just go scream outside.

Tim Villegas
[Laughing]

Child Voice
If you’re nervous, go get your wallet and spend it on ice cream and shoes.

Tim Villegas
Yes!

Child Voice
If you feel mad or frustrated, you can do what you want to do best. Or you can do flips on the trampoline. If you feel mad, please just do something that you like, do something inspires you do something to make you feel better.

Tim Villegas
And what makes me feel better is knowing that you can go ahead and call that number and get your own pep talk from a kindergartener.

My name is Tim Villegas from the Maryland Coalition for Inclusive Education and you are listening to Think Inclusive, a show where with every conversation, we tried to build bridges between families, educators and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. You can learn more about who we are and what we do at mcie.org.

For this episode, I speak with Charmaine Thaner, inclusion advocate, extraordinaire, founder of Collaborative Special Education Advocacy, and host of the longtime Facebook Live series, The Art of Advocacy. We talk about her journey from being a self-contained special education teacher to an inclusion advocate, including her son with Down syndrome, in school, from preschool to college, and in her view, the secret to successful advocacy. Thank you so much for listening. And now, my interview with Charmaine Thaner.

Welcome to the Think Inclusive podcast.

Charmaine Thaner
Thank you for having me, Tim. I’ve been a listener of yours. And so it’s a privilege to be able to be on and talk with you.

Tim Villegas
For those of our audience who maybe don’t know you, or your work, would you tell them about yourself and why you started Collaborative Special Education Advocacy.

Charmaine Thaner
When I think back when I was 18, I had moved 21 times. So I grew up with change. And change to me was quite the typical activity that happened. So when I look at myself now, I see myself as that change maker. And now I’ve been looking at inclusive education, Universal Design for Learning, co-teaching, all of those aspects, and that is the change that I’m hoping that we can bring about quickly in our public education system.

But if I go back a little bit further from when my husband and I were in college, we went to Slippery Rock State College in Slippery Rock, Pennsylvania. And at that time, it was back in the 70s and we had to have an elementary or secondary endorsement along with special ed. It’s funny because I see so many colleges these days trying to go to that dual certification. And little did I know that Slippery Rock was leading the way in the 70s by having all our students be general ed teachers first, and then special education teachers.

After graduation, my husband and I got married, we packed up my blue Plymouth Duster with a car top carrier. And we drove to Colorado, because we figured Colorado would be a wonderful state to live in. It took me a little bit to find a special ed teaching job in Colorado, because back in the 70s, there weren’t that many students in public schools with disabilities. So they were still pretty much all in segregated classes. But my first teaching job came when there was a segregated school that decided to start transitioning students from the segregated school to an elementary building. So I was hired to be that first special ed teacher in the elementary building.

It was completely self-contained. My students were with me all day, unless they went to lunch and recess. That’s when they could be with general ed students. They weren’t even included for music, art, library, PE—those kinds of special classes. So it’s interesting when I look back on my career that I started in that self-contained classroom.

After a number of years, I transferred and applied for a job in the district where we lived, because I wanted to contribute to our hometown school district. I was a resource teacher there for a number of years. I look at all the times I sat in IEP meetings, giving teachers tips on how they could include students. And it was like, I don’t know, I have never been a general ed teacher. Is all this inclusion stuff really possible? So I decided I would like to transfer to the general ed classroom for at least a couple of years, see if indeed inclusion was possible.

I did that, and I love the community of a classroom. Instead of just being a general ed teacher for a couple of years, I was a general ed teacher in elementary school for 15 years. And yes, inclusive education is possible, and co-teaching and all of those good things. So it really helped me see that what I had been advocating for was possible.

In the late 80s, our third child Dylan was born. Dylan has Down syndrome. That took us on a whole other journey. Both my husband and I had been special ed teachers. So we knew the law; we knew what was supposed to happen. But to experience the side of the IEP table where you’re a parent is really different. I know one of the things I said when Dylan was young is when we were walking in for an IEP meeting, I would always look and see if there was a box of Kleenex because I knew I was going to probably need it sometime in the meeting.

As a parent, we started that journey, advocating for Dylan to be included. When he turned three, unfortunately, we had a disagreement with the school district about what would be the least restrictive environment for preschool. We wound up filing for due process because we wanted Dylan to be able to go to a community preschool and not the special ed preschool. Luckily, we were able to settle that in mediation. Dylan went to the community preschool; the district paid his tuition. Not that we couldn’t afford the tuition, but we wanted that part of the settlement because we wanted to set that precedent that other parents could be offered the option of their child going to community preschool at no cost. The district also had an early childhood teacher come once a week to the community preschool and touch base and make sure things went well.

As a parent, I know the reality of sitting at that table and being in disagreement about whether or not your child is worthy enough to be included. After I retired from teaching, I thought I would really retire, but that didn’t happen. Within a few months, I was doing some contract work. Then I was employed by PEAK Parent Center in Colorado, which is Colorado’s Parent Training and Information Center.

I worked at PEAK as an education specialist, which I love, because we got to go around the state when you still did in-person trainings, and do workshops for parents and teachers. Part of my job also was to help with the parent advising part of PEAK services. What I found is we did an excellent job with how we walked through the IEP process with parents that would call in. We could send them resources and articles. We would give them suggestions on good questions to ask at the meeting, like “show me the data.”

Parents were really thankful. But sometimes parents would call us back and say, “I had my IEP meeting yesterday. I said, ‘Show me the data.’ And they showed it to me, and it didn’t make any sense.” There were colored lines and dotted lines. I kept thinking, we need to be able to have people that can actually go with the parents to the meetings. So when they need to ask a follow-up question, if they’re unsure, another person being with them could help.

So I started my own advocacy business. At the time, it was called Visions and Voices Together. When I moved to Idaho about nine years ago or so, I thought, Visions and Voices Together—I love the name, but it doesn’t really say what I do. So I changed it to Collaborative Special Education Advocacy. My goal is to always bring my perspective as a parent, but also my professional experience of being an educator for 30 years, and blend those perspectives to help parents advocate for their kids. So I think that was a long answer. How did I get started with this?

Tim Villegas
Oh, that was a great answer. Hearing your story, you have a very big view of inclusive education, from many different perspectives—a parent, an educator, and an advocate. Was there any point where you said to yourself, I don’t know if this is the right thing? I don’t know if me advocating for inclusive education is the right thing.

Charmaine Thaner
I would say it crossed my mind several times throughout Dylan’s education. The first time was when he was three and we filed for due process. It was emotionally draining. It was an impact on our family because I was crabby and irritable. I remember talking to my friend Kathy Snow, the author of Disability is Natural. She lived in the same hometown as I did, and she would go to meetings with me as support, and I would go to meetings with her. I remember vividly standing on the front porch of our house, talking to Kathy, and saying, “Kathy, I don’t know if I can keep doing this. I really don’t know if I can do this.” She said, “No, Charmaine, this is right. This is what you believe and keep going, keep going.”

I was also lucky because I was going through Colorado’s Partners in Leadership Program. I was hearing speakers like Norman Kunc and Judith Snow—people that made me think, yes, this is the right path. This is what we need to be doing.

Luckily Dylan was fully included in elementary school. I didn’t have as many doubts because the staff was amazing. They had just written a grant to Colorado to get some waivers on the special ed process. What they did—this was in the early 1990s at Columbine Elementary—was they took staff and looked at how to change roles, not just looking at lists like “a speech and language therapist” and “Claudia’s the gifted and talented teacher,” but how can we use our staff and support kids in classrooms without doing pullout. That was an amazing experience for Dylan to be in our neighborhood elementary school, and that our neighborhood elementary school was being so innovative back in the 90s.

The middle school years—I didn’t have any doubts about inclusion being the right thing. It was a little bit harder in middle school because they hadn’t experienced supporting many students in the classroom with disabilities. Their model was that you spend most of your time in this resource room. I knew inclusion was still the way we wanted to go. It was just that in middle school, we had to ramp up our advocacy again.

In high school, I didn’t have any doubts about inclusion because I had seen other things that Dylan experienced throughout his years in the district. He felt like he was really welcome, that he really belonged. I’d say in the early years sometimes there were moments where I wondered, is this really the right way to go?

Tim Villegas
Yeah, I wanted your perspective, because a lot of parents are asking that question and wondering if it’s the right thing. And like your story, they’ve gone through considerable emotional stress. Financial stress, right. And they’re going, is this worth it? So thank you for sharing that.

It seems like in the 90s, there was momentum around inclusive education. You had a bunch of people spending lots of money, including the Federal Government, on inclusive education initiatives. Then right around late 90s, early 2000s, it kind of—I don’t know what happened. I didn’t start teaching until 2003. I came in on the “inclusion? No, Tim, we tried that. We tried that, it didn’t work.” I’m curious as to your perspective—did you see that? The investment in inclusive education initiatives in the 90s, and then it just kind of petered out in the 2000s?

Charmaine Thaner
I didn’t realize that until much later. When I look back, it’s like, how come we were able to have Dylan fully included from preschool—and actually through college—and why isn’t it still happening today? When I was advocating for Dylan when he was younger, that was the right path. Those were our values. It seemed like there was a group of supporters cheering us on, and mentors I could look to for help.

Now, I look and see more classrooms where students on paper are included for 80% of the time, and yet they’re sitting at a back table with a para doing totally separate work. Those images of Michael Giangreco’s “island in the mainstream”—how can this be 2022 and we are seeing this eruption of islands in the mainstream? We already went through that; we know that wasn’t appropriate services for kids.

At the time, I don’t think I realized it. But now, yes, I can definitely see that upturn. I talk to other parents of adult children, and they have similar stories—that we caught that inclusion wave and rode it out for years and years.

All along, Dylan graduated from high school in 2007. Ever since third grade, he talked about going to college. I always thought in my head, “Yeah, Dylan, like that’s going to happen.” We had college savings for his brother and sister. We had no college savings for Dylan. Look at that—what message are we sending there?

As he got older and his brother and sister were talking about visiting colleges and what they wanted to do, Dylan’s goal of going to college became stronger and stronger. I remember saying to him in high school, “Dylan, I don’t know if we can find a college that will have somebody with Down syndrome go to their college.” But Dylan has this kind of magical way of setting goals and achieving them.

When he was a junior, Dylan went on a tour of Pikes Peak Community College where Kathy’s son Benjamin was going. Benjamin, in his wheelchair, took Dylan around the community college and talked about different things. We also had a college tour set up for the University of Colorado at Colorado Springs. Dylan had a female tour guide for that college tour. After those two tours, I said, “So what do you think? Would you like to go to Pikes Peak with Benjamin, or would you like to go to UCCS?” He said, “No, I want UCCS. I liked the girls there.” Little did I know, my husband picked a college that had better enrollment of females to males—the ratio was higher. I thought, “Uh huh, Dylan, this is how you choose colleges.”

That was during his junior year. I started making phone calls. I thought, I’m just going to call the college and not say he has Down syndrome; I’m just going to say my son wants to come here. We started the conversation with the Disability Studies Office, with the registrar’s office, and of course, eventually, I had to say he does have Down syndrome, but he really has this goal. Everyone we talked to said, “No, we don’t have kids with Down syndrome come to the university. He could check out the community college; that would be better.”

Luckily, Christi Kasa was working at UCCS—and she still does. She became a crucial ally. We got an appointment with the Vice Chancellor of the University. So Dylan, my husband and I, and Christi went and talked to the Vice Chancellor about Dylan being able to come to the university. I’ll never forget some of his words. He said, “Dylan, we are a public university. We’re here to serve the public and the community, and you’re part of our community.” He said, “I don’t want you to be a mascot at the university.” Dylan asked, “What’s a mascot?” I think what he meant was, we don’t want him to be a token—“Oh, look, aren’t we great, we have this kid with Down syndrome on our campus.” He said, “No, Dylan. I want you to go to class. I want you to do the work. I want you to be a student that’s going to be learning here.” Dylan said, “Yes, this is what I want.”

With the Vice Chancellor’s support, Dylan was able to audit classes for four years. He wasn’t fully admitted, but in 2007, those were the baby steps we were taking at that time. For Dylan’s Transition Plan, he was not going to go back to high school as a super senior, which is what many of our kids did in the district—some high school classes in the morning, then community work or job shadowing. Dylan wanted to go to college. So for his transition plan, the district provided transportation down the mountain to the university. They provided a para who went to classes with Dylan, especially at the beginning of the semester, and then she faded. What we found was she was really there more to help the professor feel comfortable.

Those were his transition services. He worked for graduation, didn’t take the diploma. We’ve looked at all of his education and how it’s been inclusive. It’s really disappointing when I work with families now and I don’t see those options and opportunities. It looks like we’ve reversed in our ways of educating people instead of continuing to make progress.

Tim Villegas
What—if you don’t mind me asking—what is Dylan doing now, now that he’s post-college?

Charmaine Thaner
Good question. He’s renting a house with two other gentlemen that have disabilities. He receives staff support. The staff can drive them to the grocery store. Where Dylan lives, there’s no city bus transportation. He was working as a host at a Red Robin restaurant before COVID, and he loved that.

The other thing I find with adulthood is it’s really a second, another whole battle for inclusive activities. The staff hired by an agency provide different activities—like a cooking class or an art class—but they’re all segregated activities. This was so foreign to Dylan, because that wasn’t his experience in school. It gets even harder as Dylan gets older—now he’s 33, and most 33-year-olds are married with kids, have a life. It’s not as easy to make connections and friendships. That’s another frontier for inclusive communities.

Tim Villegas
Yeah, it’s the extension of what we want for our kids through schooling, and then to have the community being inclusive. It’s the whole life—a lifetime of inclusion. Right.

Charmaine Thaner
Right. And that’s the thing. Now there are so many more postsecondary opportunities for disabled students. I think that came from parents seeing the success of inclusion during pre-K through senior year, and then wanting more after high school. Ever since 1975 or before that, you saw grassroots parent advocacy with disability organizations, and that collective advocacy made huge changes.

I think that’s what we continue to see now. What’s different is it’s not just parents and disability organizations—it’s self-advocates. Their voice is now at the table. It’s also educators. There are so many educators around the country who are proponents of inclusive education. We have the opportunity to widen our circle of allies and bring all those voices to the table to make change. That’s my hope—that our group can continue to make changes in public education and in our communities.

Tim Villegas
I see what you’re seeing. I see dedicated and committed parents who are advocating for inclusive education. And I know a lot of educators who are speaking out that they want inclusive education to be the expectation in the United States. What do you think is the next step in this journey?

Charmaine Thaner
I think it’s continued conversations and continued building relationships. One of the things that I said a long time ago was the three R’s of advocacy are relationships, relationships, relationships. As parents, when we look at our kids and we want them to have relationships with classmates—the importance of getting to know each other—that is the first step of building relationships.

As parents, we also have to look at our relationships with staff as really critical. That’s going to start with the same baby steps of getting to know the staff. I think of things that might sound like silly little things, but it’s talking to the teacher and finding things out like, “Oh, you have the same favorite restaurant in town,” or “I can’t believe that your sister and my brother—their sister—went to high school together,” or whatever. Those little pieces of information that help you know that teacher as a person make a huge difference. When the teacher gets to know your family as a family, I think teachers put even a little bit more extra effort into the families that they’re connected with.

We need to make sure that’s happening with all the families, and not just the families that have the time and the education, and maybe the cultural competencies and privileges that white middle class people like myself have. I’m really looking at how we can develop relationships between families and educators, and also look at other marginalized students and families in that classroom and in the building, and what we can do to develop those relationships.

I think it’s conversations, it’s relationships, it’s looking at examples like the school districts that the Maryland Coalition for Inclusive Education has been working with to show people what’s really possible.

Tim Villegas
Thanks for the plug. I swear, I didn’t pay her to say that.

Charmaine Thaner
You can send a check to—no.

Tim Villegas
Do you ever think that advocacy can cross a line? I’m hearing you talk about relationships. But I’m not hearing you talk about being adversarial or shouting people down, or shaming. I don’t know if you have an example—it’s fine if you don’t.

Charmaine Thaner
I look at myself—there’ve been times in IEP meetings, especially when I was first beginning advocacy, where I was shouting with the special ed director. I have behaviors and examples when I was not that stellar collaborative person. That happens.

As an advocate, I really only get parents calling me when communication has broken down, when trust has broken down. That is another challenge because I’m coming into a situation where there’s been a lot of tension, a lot of arguing before meetings. I’m thinking, okay, so how are we going to be collaborative? It’s hard because parents expect when they hire an advocate that the advocate is going to be a pretty assertive person. That’s not what needs to happen every time.

On the other hand, I also help parents write state complaints and go to mediation with them. I know it can get to the point where we’re not going to do this collaboratively; we’re going to have to look at other options for dispute resolution. Parents are emotionally involved because it’s their own child. I rarely see what I would say is crossing the line from parents. I see it as being persistent with their advocacy.

All of that happens during IEP meetings when there’s such a misalignment between values. That’s something that takes a lot of time. As parents looking at your children, you don’t have a lot of time for systemic change to kick in. So you have to be really persistent throughout each school year.

Tim Villegas
When would you tell a family to ask for help?

Charmaine Thaner
When you begin doing as much as you can and you’re still not getting the results and the outcome that you want for your child, then it’s time to do something different. Sometimes that means bringing someone with you to the meeting—not necessarily a professional advocate. It can be a neighbor that comes with you. You can tap into resources at your Parent Training and Information Centers and talk to parent advisors there. A lot of local ARCs have advocates that parents can use.

When you see you’re not making progress with what you’ve been trying, then, like anything else, we have to switch up what we’re trying and try a different strategy. I offer parents a 30-minute phone consultation, and sometimes I can give some ideas and they can run with it. Other times, it’s “No, we really want you to be with us at the meeting. We really want you to be reading the IEPs and giving us feedback if something needs to be changed.”

Most parents can’t afford an advocate. We have to look at that point of view. That’s one of the reasons I started my weekly Facebook Live shows—to provide free advice and strategies for families and educators, so that financial burden isn’t there and they can still get help and resources.

Tim Villegas
Yeah, I’m glad you brought that up. Tell us—it’s every Thursday, right? Rarely do you miss. What time is that?

Charmaine Thaner
It’s at noon, Mountain Time. I always give Mountain Time first because usually we think of Eastern Time setting the standard, but no—I’m here to speak up for the Mountain States.

Tim Villegas
I like it.

Charmaine Thaner
Some people don’t even know there’s a Mountain Time timezone. So yeah, noon Mountain Time. That makes it two o’clock Eastern Time, 11 o’clock Pacific. I tried to pick a time around lunches, so some people could use that as their lunch time as a way to access it. When I first started, I was doing it in the evening, but evenings are hard for families. We’ve had 223 shows.

Tim Villegas
Oh my gosh. Wow. Wow.

Charmaine Thaner
I’ve been doing a weekly show for a while.

Tim Villegas
That is impressive. Congratulations on that. Hopefully we’ll keep on going—keep on going. You have a wide variety of guests. I was looking back at your Facebook feed and thought, wow, you have educators, you have disabled advocates, sometimes you fly solo, right?

Charmaine Thaner
Right.

Tim Villegas
So, I’m clapping.

Charmaine Thaner
I know—it’s a commitment. I’ve found that a lot of people say how valuable it is, so I continue to do it. I try to mix things up—usually once a month we have a Q&A show. The parents and teachers who are viewers can decide on the topic that we talk about, and I can answer specific questions. I try to do at least one or two solo shows where I do a training on a topic that a lot of people are interested in at that time.

I’ve made a lot of connections and have mentors like Dr. Paula Kluth. We’ve had Ross Greene on our show—some big names—and also disability advocates that might not be known to everyone but have an important message. Stephen Hinkle has been on our show a couple of times. Cal Montgomery, who I recently had on as a guest, is an exceptional person for us to learn from—different people who continue to help me push my thinking, and for me to recognize where I’ve been ableist and had ableism conditioned. Now I feel like I’m trying to decondition a lot of that. I’m still evolving.

Tim Villegas
We all are. And I really appreciate you being so candid. That’s something that I relate to. I definitely have—in this whole discussion of anti-racism and anti-ableism—I recognize the racist and ableist thoughts that are inside of me, and we’re constantly trying to do better.

Charmaine Thaner
Right.

Tim Villegas
Yeah. All right. One last question before we sign off. I see you have a magic wand.

Charmaine Thaner
Yes.

Tim Villegas
So let’s get that magic wand out. Imagine you were advising the Secretary of Education, Miguel Cardona. What would you advise them to focus on if you were advising them?

Charmaine Thaner
This is such an interesting question. If you look at the United States Secretary of Education, they really can’t afford to just focus on one thing. I’m very pleased that we have a different Secretary of Education, and one that is more in line with the values and the beliefs of inclusive education. I think we have an excellent opportunity to make further advancements and have the Federal Department of Ed’s support.

I look at issues like ending seclusion and restraint. I just did a show about school boards and how we have to have this collective advocacy and what we can do at the school board level. I thought, I need to get back involved in the school district where I live. Without kids in the district, you feel a little more at the side. Speaking of seclusion and restraint—every time a school is built in my district, there’s a seclusion room in that plan and in that building. I thought, Charmaine, this is something that you need to be looking at and how I can start a group of parents to look at changing that. From a federal level, if we had more guidance and support to end seclusion and restraint, that would be exceptional.

Of course, I would like the Secretary to continue to look at things like Universal Design for Learning and how it’s written into some of the laws we have for education, but we don’t see it implemented with fidelity that much yet in our schools. I would like the Secretary to focus on how we can expand inclusive education to be a conversation that goes beyond special education, because there are so many marginalized students in our classrooms that we can’t keep seeing this as a special education issue. This is a general education initiative—we need systemic changes.

And I’d just love to have lunch with him and listen to him and hear his perspectives now that he’s on this federal level. As families and educators, it’s hard for us to know what happens on the federal level. But that’s also an important way to be policy advocates—when we get involved at that level. I wish him well. I should see if I could get him to be a guest on my show.

Tim Villegas
I was just thinking that.

Charmaine Thaner
Do you have any connections for me?

Tim Villegas
I wish, I wish. Charmaine Thaner, thank you so much for being on the Think Inclusive podcast. It was an absolute pleasure.

Charmaine Thaner
Thanks, Tim. It was great. I appreciate the support that you give your guests, because I felt like we were just having a conversation and it wasn’t something stressful, which I was worried about. Thank you for making my experience as a guest delightful, and I appreciate the work that you’re doing and that you continue to do, so it’s exciting.

Tim Villegas
Think Inclusive is written, edited and sound designed by Tim Villegas and is a production of MCIE. Original music by Mile Kredich. If you enjoyed today’s episode, here are some ways that you can help our podcast grow. Share it with your friends, family and colleagues. And if you haven’t already, give us a five star review on Apple Podcasts or Spotify. Special thanks to our patrons Melissa H., Sonya A., Pamela P., Mark C., Kathy B., Kathleen T., Jarett T., Gabby M., Erin P., and Paula W. for their support of Think Inclusive. For more information about inclusive education or to learn how MCIE can partner with you and your school or district, visit mcie.org. We will be back in a couple of weeks. Thanks for your time and attention. And remember, inclusion always works.