On this episode, the gang sits down with Julie Salih-Worth to talk about her experiences as a teacher with disabilities and how the education system could do more to meet the needs of students and educators with disabilities alike. Then we’re joined by Allyson Matthews, a student who is advocating for herself in the IEP process, and her mother Melisa.

Full transcript available at https://www.ndrn.org/resource/panda-pod-september-23/

Michelle Bishop:

Hey everyone, welcome back to our podcast. I am one of your lovely hosts, Michelle Bishop, Voter Access and Engagement Manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, one of our public policy analysts at NDRN. And I have not had enough coffee this morning, because I managed to spill it all over myself. It’s been one of those days, but things are going to get better.

Michelle Bishop:

Well, everyone prefers that over Stephanie having too much coffee.

Stephanie Flynt:

Except for Stephanie.

Michelle Bishop:

Stephanie with a lot of coffee is a lot. Sorry, Raquel, take it away.

Raquel Rosa:

Hey everyone, this is Raquel, I am the Community Relations Specialist at NDRN, and I am super excited about today’s episode.

Michelle Bishop:

This is a big one, because it’s September, so this is our back to school special, love it. Who are the guests that we have on tap today?

Jack Rosen:

Do I not even get a shout-out anymore? I hosted this… [inaudible 00:00:53] of the interview, I hosted this episode.

Stephanie Flynt:

It was Michelle’s turn.

Michelle Bishop:

The level of beef that is brewing between me and our phenomenal producer, Jack Rosen, rose every single month when I do not introduce him. Our producer, Jack Rosen, please take it away, introduce yourself, and maybe tell the people what we’ve got going for the back to school special episode.

Jack Rosen:

Hi, this is producer Jack Rosen. Thank you for that lovely intro, Michelle. Today our main guest is Julie Salih-Worth, she is a teacher with cerebral palsy. And she spoke to us about her experiences navigating the education system, both as someone who is aspiring to become an educator, and what it’s like for her now as a educator with disabilities, and how we could do more to ensure an inclusive environment for both educators and students alike. And Stephanie, do you want to tell the people about our spotlight story today?

Stephanie Flynt:

Yeah, definitely looking forward to the multiple perspectives that are going to be represented throughout this episode. So today for our spotlight story, we are super excited to have Melisa and Allyson Matthews, they are a mother-daughter duo. Melisa has a background as a teacher of the visually impaired, or as some people refer to them as TBIs. And Allyson is her daughter, who also happens to be blind or low vision, and super excited to hear about the way that her mom helps approach age appropriate self-advocacy with Allyson. Allison is… I want to say she’s around 11 or 12, definitely in the preteen years. So again, super excited to hear about that. And let me tell you, I feel like for me, if I had learned age appropriate self-advocacy prior to high school and started learning younger, I feel like it would’ve been of course more ingrained. And while as an adult, it’s something that of course I have begun to learn, the sooner you start to learn, the more comfortable you get, the more confident you get. And so I’m so excited for you guys to hear about that perspective today.

Michelle Bishop:

If I had learned age appropriate anything in high school, the world would certainly be a better place. So I can’t argue that… Why would I say that publicly? That was a bad idea. Oh, I hope my mom [inaudible 00:03:33].

Stephanie Flynt:

Reverse.

Michelle Bishop:

Mom, go back to not listening to the podcast. Okay, so let’s jump right into it this month, and I will be over here drafting the public apology that I’m going to have to issue to Jack because I refuse to ever acknowledge his contributions to this podcast.

Stephanie Flynt:

Can you sing it or write it in a haiku format?

Michelle Bishop:

First of all, don’t threaten me with a good time. If you want a one woman production of a musical of my apology, I’m ready.

Stephanie Flynt:

Let’s do it next episode.

Michelle Bishop:

All right, let’s get into our first guest this month.

Raquel Rosa:

Okay, let’s get into it everyone, today we are joined by Julie Salih-Worth. Julie, thank you for joining us today.

Julie Salih-Worth:

Thank you for having me, I’m glad to be here.

Raquel Rosa:

So getting started, could you share with us a little bit about yourself?

Julie Salih-Worth:

Yes. So my name is Julie Salih-Worth, and I am an elementary and middle school Spanish teacher. I also teach English as a second language to adult learners. If you count all of the years I’ve been an educator, this is probably year 18, but I’ve been teaching for seven in a classroom. And like I said, I work with elementary and middle school students at a Montessori school here in St. Louis, Missouri. I also have cerebral palsy and a visual impairment, and just a fun fact about me, I am a classically trained musician.

Raquel Rosa:

What instrument do you play?

Julie Salih-Worth:

I play piano. I have not played in quite a while, I’m probably a little rusty at this point. But I play piano and I sing.

Raquel Rosa:

Fantastic, thank you so much.

Jack Rosen:

Funny enough, you and I have talked about this before when you joined us a couple years ago for a get out the vote video. But I was wondering for those who haven’t seen it, or don’t remember since 2020 was so long ago, can you talk to us a bit about some of the barriers that you’ve faced as an educator with a disability?

Julie Salih-Worth:

I could talk for a really long time about that. So I knew since I was 15 years old that I wanted to be a Spanish teacher. I absolutely loved my Spanish class in high school, and decided when I got to college that I would study it, and major in it, and eventually ended up with a degree in Spanish. And so the issue was not that I didn’t know what I was doing, or that I wasn’t good at what I wanted to do, the issue, one of many that I had, is that I was told that because I have a physical disability, a noticeable physical disability, that I would not be able to teach. And I attended a traditional four-year university program, where I studied Spanish and education. I successfully completed the program, made it all the way through. And then when I got to student teaching, which is a requirement in the state of Missouri, first of all, I was placed in a school that was incredibly far away from my house. Which is important to the story, because I don’t drive, I can’t drive, it’s not an option for me.

And so transportation right there is already a barrier to me physically being able to get there. But I worked that out, ended up hiring a driver. And then I was essentially told, after having worked in this particular classroom for six to seven weeks, I was told, “If you have your own classroom within a year, I don’t think…” And this came from the teacher who was supervising me, she said, “I don’t think you’ll be able to manage it.” She said, “You have good relationships with students and good rapport with them, and they listen to you, but you have horrible organizational skills. You don’t know how to plan anything, you look exhausted all the time, and I don’t think you’ll be able to do this.” And quite frankly, those were some very, very crushing words. And I later received a phone call that evening stating that the university had decided to remove me from my student teaching placement, and therefore I would not complete my degree as I had originally planned, I would not complete student teaching, at least not at that point in time.

And I was to come to the university the next morning for a meeting to discuss my options. At which point at said meeting they offered me a minor in education, and told me that that was essentially my option unless I wanted to stay at the university for another year and redo the whole thing again. To which I said, “No, thank you, I don’t understand quite what went wrong here. I mean, there are so many reasons why I can’t stay here another year, but I don’t want to, to be quite honest.”

And so after that happened, first of all, I guess I should say, it took me a long time to really unravel that. And it took me a lot of talking myself out of thinking that I was a horrible teacher, and knowing that I was supposed to be an educator, but I didn’t feel like I was. And I felt like that option had basically been ripped away from me. And I eventually did go back to school, and it worked out. But the message that I want people to take away and to understand, is that that took me 10 years. That took me 10 years to be able to say, “I’m going to do this, and I’m going to try again. And that these voices are not going to tell me what I can and can’t do.”

Jack Rosen:

I think that really speaks to one of the big issues here. I mean, we’ll get to some of the issues with the bureaucracy and the IEP process in a moment. But the truth of the matter is also that there are all these barriers to people with disabilities becoming teachers. So we have students who need accommodations, there is that perspective of people with disabilities on the other side of it can be missing, because it is hard for people with disabilities to become educators. So I’m wondering how we could support people who want to be teachers with disabilities, what can we do to make the education system on the teaching side more inclusive?

Julie Salih-Worth:

So if we think about schools of education and education teacher preparation programs, and how can those programs better cater to educators with disabilities? How can schools better cater to educators with disabilities? We need to realize that we are encountering capable, competent people who come from a culture of experience oppression that has a historical background. Most people never learn about the disability rights movement from what I’ve been able to tell. And if we shift our focus from thinking of disability as this medical condition that needs to be fixed, cured, taken away, removed, “Oh, we’ll just remove the barrier and then the person will be able to function just fine.” Yes, that might be true, but we also need to realize that disability is a strong part of a person’s identity that informs who that person is, and it does inform in positive ways. And I would not be the same teacher if I didn’t have a disability, because I have a different perspective.

I don’t have an able-bodied person’s perspective, I can’t. So when my perspective is different, which it is, then the message that I’m able to deliver to my students is also different. It’s equally as valid, it’s one that they need to hear, it’s one that they need to know, and it’s one that needs to be enfolded into the fabric of our educational system. What I’m trying to say is that the voices of folks with disabilities need to be part of the fold of the pedagogy that makes up how we think about education. I’ve always said when I was in school, and I was in school for a long time, I have two degrees, three certificates, and during my 20 something years there I did not have one teacher with a physical visible disability. So we tell educators in their teacher preparation programs that as they’re working with students, and as they’re planning curriculum, and as they’re envisioning their future classrooms, that they need to think about who their students are.

They need to think about students of color, they need to think about students from different socioeconomic backgrounds, they need to think about A, B, and C. And they need to make sure that those students, those voices, those faces, those experiences are represented in their classrooms, in their literature, in their lessons, in their work that they plan, or take home, or what have you. But I said, “I don’t remember anyone thinking that way for me, I was educated by all able-bodied people.” And so I think what needs to happen is we need to reframe how we look at expectations from the educator side, we need to reframe how we look at the expectations for the teacher prep programs, we need to reframe how we look at disability. Is it just a one class and we’re done, or is it something that we’re going to weave into everything that we think about because we need to make sure that that representation is there?

Jack Rosen:

I think that’s a great way to put it, Julie, that it is not enough to just say, “We support students with disabilities, or we support educators with disabilities.” But it needs to be putting in the actual work to do that.

Raquel Rosa:

So Julie, you have a wealth of experience, and I think it is just beyond all of us to relate to the different perspectives and hats you wear, and the history that you have experienced. So I wanted to touch back on something you were discussing earlier, which is the IEP, and I think there’s a lot to unpack with the IEP process. Specifically for this question, I would like to know… A lot of families, parents, legal guardians, they unfortunately come into these IEP meetings unfortunately with an us versus them kind of tone. And it really isn’t supposed to be that way, we really want to make sure that these are student-centered collaborative discussions where the student is at the center of it, and their success is contingent on everybody’s creativity and buy-in. So I was wondering if you could talk to us about how each member of the IEP team can work together to achieve the ultimate mutual goal of academic, social, and all the other attributes of success that a student has in the classroom.

Julie Salih-Worth:

So first of all, I think that communication is key when you’re working on an IEP team, I think that recognizing your role on that team is also super important. And so one of the things that I want to point out is that parents and legal guardians have a huge seat at the table, and so does the student. And so many times I’ve heard people say… Including teachers that I’ve spoken with, they’ll say, “Well, it could be traumatizing to have the student there, because they won’t understand what we’re talking about, they won’t know how to respond. They are too young, blah, blah, blah, blah.” And I’m like, “Okay, so you’re going to have a meeting about someone, you’re going to talk about a 20-page document that has all kinds of things about that person written in it, and they’re not allowed to be in the meeting, is that okay? Would you like it if someone did that to you?”

And so I think that first of all, the student can have a role, even if they’re five years old, they can go to the meeting, they can introduce themselves, they can present something about themselves that they want that team to know. It could be something that they like, a hobby that they have, it can be something that they recognize is difficult for them that they acknowledge they want to work on. And this can be something that the whole team pulls together on and makes sure that that student, however old they are, is at the table for their meeting, even if it’s just for five minutes. Do they have to be there for the nitty-gritty of all the stuff that might go on for two hours? Probably not, but we need to be able to give them the agency to speak up for themselves at a meeting that determines their educational future in large part, that’s all about them.

And time is of the essence for teachers, there’s never enough of it to get the 99.9 million things that need to be done in a day actually done. And I understand that, because I don’t teach one level I teach 14 different classes in first through eighth grade, I get it. And if I’m asked to be on an IEP team, I will be on the IEP team, and I will make sure that that kid gets their accommodations. That means communicating with the special ed teacher, it means asking questions, never think that any question is stupid. We have a tendency… And education schools breed this, we have a tendency to want to be perfect at everything. We think that everything needs to be just so, we think that the lessons need to be just right, the kids need to be engaged 100% of the time. This needs to happen this way, the paper needs to be cut perfectly, yes and no.

If you don’t know something, ask a question. Don’t be afraid to say, “I don’t know how to work with this student, and I need guidance, and I need support, and I have ideas but I need to know if they are feasible.” Don’t be afraid to say you don’t know. I think that if a team of know-it-alls comes together, and everybody comes to the table as an expert, like, “I know this, and you know this, but you don’t know that.” We are all at this table to serve the interest of the child, we are at this table to collaborate.

We are not at this table to get into a battle about services and supports, and ideas about how to make those happen. Because truth be told, the services and supports and all of that, to be quite frank, are going to go away at some point in the child’s life. And the child may not remember that, but what they might remember is the sense that they got when they felt like they were not included in those meetings, or the traumatized feeling that they felt when they realized that this whole meeting was going on about things that they didn’t even know about because they weren’t invited. And so when everyone comes to the table and there’s that us versus them, the first thing we need to do is establish, who are we there for? We’re there for this child.

Raquel Rosa:

So I was hoping to wrap us up, if you could give us one takeaway what students, families, and educators can do to more strongly advocate on a systemic level, what advice do you have?

Julie Salih-Worth:

I think the most important thing that you can do is choose your issue wisely, know that you’re not going to solve the whole thing overnight, because education is a broken system. So choose your issue wisely and determine, who is with you in that thing? Who feels the same way you do? Who can you talk to about this? Who is having the same problem? Who sees it the same way you do? Or who can offer you a perspective that might compliment yours? And talk to people, form a group, get with each other to figure out how to, for lack of better words, solve the system, because you’re not going to do it alone. And to go back to the question about the IEP and the us versus them mentality, we often come to those meetings feeling like we are fighting a battle all by ourselves, and we’re not.

There’s always someone somewhere who probably has the same issue, or feels the same way, and might be afraid to say that. And so this is the piece of advice that I would give. If you can find that person or group of people and get with them, talk to them, get to know them, and strategize around your issue. Learn about it, learn about its history, learn about who did what and how far has it grown, how far has it come from where it is now, and strategize and make a plan for how to solve it. But recognize that you’re not going to do that by yourself, and it might be a really long process, and that we have to do it in collaboration with others. Small victories count, choose your battles wisely. And don’t be afraid to say, “I don’t know, I don’t get it, and this is really frustrating.”

No one is a warrior all by themselves. In the disability community we are taught that you have to pull yourself up by your bootstraps and you have to figure it out, you have to be independent, you have to do it all by yourself. Okay, no, you don’t. I did not get myself to work this morning, I got in a car with someone who drove that car to work. So independence is really an interdependent thing, we all work together whether we’re solving the problem of how to get to work, or whether we’re solving the problem of bias in test scores. And so if you as an individual can figure out what is that one thing in this broken system that you care strongly enough about to fix, get with your people, get with your community and figure out who they are. And then target, who is the person who can help you get what it is that you want to get done? And realize that might take a while. And keep going and say, “Well, that didn’t work, but what else can we do? Well that didn’t work, what else can we do?”

In the same way that when a child doesn’t understand something the first time, if you are a good educator, you don’t just walk away from that child and say, “Well, oh well, you didn’t get it, so therefore I’m done teaching you.” You work with what you have, and sometimes that means that you build a plan to start over, or you build a plan with more people or more resources. But you never, or try to never think that you are in this broken system all by yourself, groping at straws, trying to figure out which way is up. Because I guarantee that there is someone there who knows something that you may not know, who can piece together along with your knowledge the information that’s missing. So always find your people, focus on whatever your goal is, define it, and then figure out who can get you where it is that you want to go on that educational trajectory. Who can get you there? What is it going to take?

Jack Rosen:

I think that’s so true, Julie, that at the end of the day, we need parents, educators, administrators, and of course these students to come together for what’s in the best interest of students with disabilities. Ideally, it shouldn’t be two sides fighting it out, it should be all of them working together towards the ultimate goal of making sure students with disabilities receive the education they are entitled to.

Julie Salih-Worth:

Exactly.

Jack Rosen:

Thank you so much for coming on today, it was great getting to reconnect with you. And I think you shared a great perspective on what it’s like both as someone who’s been a student with a disability, and now someone who’s an educator with a disability and is fighting for their students. So it was great to have you on and thank you so much for joining us.

Julie Salih-Worth:

Thank you again for having me.

Jack Rosen:

All right, so today on the podcast we have on Melisa and Ally Matthews. Ally is a student who has been advocating for herself in the IEP process, and Melisa is her mother. And we’re going to talk to them about self-advocacy and how students can stand up for themselves and get the accommodations they are entitled to. Thank you for joining us today.

Melisa Matthews:

Thank you for having us.

Jack Rosen:

All right, so our first question, Melisa, could you tell us a bit more about you and Ally’s journey, particularly as it pertains to self-advocacy?

Melisa Matthews:

Absolutely. Ally has oculocutaneous albinism, and we have been advocating… Even when she was in early intervention, we did not have a teacher for visually impaired who supported us. And I was constantly asking that question, whether it was the ability, could she physically do that or not do that, or could she see it or not see what they were asking her to do? So even at a very young age, just asking a lot of questions, and even beginning to model some of that for her. So she’s 11 now, and we continue to navigate advocating not just in schools, but outside of school settings.

Raquel Rosa:

Can you tell us a story when you had to advocate for yourself and how you went about doing that?

Allyson Matthews:

Sure. So one of the first times I had to advocate was in preschool when one of the teachers was sharing a book and reading it out loud, and I couldn’t see the pages or the pictures, so I had to ask to move up and see them. And the teacher said yes, so I was able to now see the book, see the words, and see the pictures.

Raquel Rosa:

Thank you so much. So my next question is for the both of you, I was wondering if you could talk to us about what educators can do to be more open and encouraging about self-advocacy from both a parent perspective and a student perspective.

Melisa Matthews:

Yeah, so absolutely. I think as a parent, it’s very important for you to be able to share successes and struggles that your child is having outside of the classroom. And really looking at your child as a whole, being honest at that IEP table. And also as a parent, but also as an educator, trying to really understand the impact of education and access to education, and especially with all the technology being open. And again, what are they doing outside of the classroom? And as educators sitting in the IEP table, really listening to parents and understanding what that child is like outside of the school. Because outside the classroom is a lot of times just as important as inside the classrooms, understanding how they’re accessing their education, or their social life, or curricular activities, as well as just how are they growing and developing as kids? So I would encourage not only parents, but educators all sitting at the IEP table really looking at from the time the child is awake to the time the child goes to sleep, what occurs during the day? And take all of that.

Jack Rosen:

So I’ve been through the IEP process myself when I was a kid, and I know it can be hard to advocate for yourself. Do you have any advice to other kids and students about how to advocate for themselves and the accommodations they need?

Allyson Matthews:

Yeah, I actually do. When you’re talking [inaudible 00:30:36] say what you need to say. Because sometimes you can get super nervous if the teacher is projecting up on a TV screen and you can’t see it, sometimes people can get super nervous when they’re asking. And just the thing is, you have to really come across straight and just say what you mean.

And also having a plan if that teacher or parent says no, because sometimes I ask for things and people say no. So I have to make sure I have a plan for my mom to figure out, or me to figure out. And when this does happen, when a teacher says no, I usually go home and tell my mom, she emails the school, and we get it solved. Or I might just come to the teacher and say, “Hey, I need this and this.” And they might just fix it then and there. And also when you’re talking to a teacher, make sure you get your point across, because sometimes that can be nerve-racking and that happens to me too. But when that does happen, you just have to get your point across, get it fixed, and then you’re good to go.

Jack Rosen:

I think that’s such good advice, never take no for an answer when advocating for your right. Melisa and Ally, thank you so much for coming on today and sharing your perspective. I think it’s really valuable for teachers, students, and parents alike to hear about just how important self-advocacy is. Thank you for joining us today, it was great having you on.

Allyson Matthews:

You’re welcome.

Michelle Bishop:

Well, thank you to all of our guests, and it is September. So Stephanie, I’m guessing you have a themed back to school joke for us.

Stephanie Flynt:

A themed back to school joke for everyone, it’s actually kind of a triple-decker joke.

Michelle Bishop:

Why are all your jokes so long? But go on.

Stephanie Flynt:

Okay, I couldn’t help it for this one. I literally laughed for half an hour because it’s so funny.

Michelle Bishop:

Oh, no, I’m so worried.

Stephanie Flynt:

So what is a cave student’s favorite class?

Michelle Bishop:

A what student?

Stephanie Flynt:

A cave student.

Michelle Bishop:

A cave?

Stephanie Flynt:

A cave.

Jack Rosen:

A cave student?

Stephanie Flynt:

A cave, C-A-V-E, someone who lives in a cave.

Michelle Bishop:

Jack, do you know a lot about cave people?

Jack Rosen:

I haven’t met any.

Michelle Bishop:

I haven’t either, but we can come up with an answer to this. Okay, a cave person’s favorite class?

Jack Rosen:

Michelle, do you want to just explain what happened?

Michelle Bishop:

Nala the service dog jumped on me. I think Nala doesn’t like it when I insult your jokes.

Stephanie Flynt:

Yeah, she doesn’t, she’s very joke protective.

Michelle Bishop:

All right, we don’t have an answer, we got nothing.

Stephanie Flynt:

Gem class, get it?

Michelle Bishop:

Gem, G-E-M?

Stephanie Flynt:

Yeah, G-E-M.

Jack Rosen:

Because they’re in a cave, so maybe there’s gems there.

Michelle Bishop:

So there’s gemstones because they form in rock.

Stephanie Flynt:

Right. Oh, so speaking of which, did y’all know the kids now apparently have walkout songs? Instead of first day of school photos, they now do walkout songs or whatever.

Michelle Bishop:

I respect it.

Stephanie Flynt:

Yeah, so what do you think this cave student’s favorite [inaudible 00:33:45]?

Michelle Bishop:

Oh, no, this is going into another joke.

Stephanie Flynt:

Of course.

Michelle Bishop:

I wasn’t ready for this.

Jack Rosen:

Okay cave student… Wait, I think I got it.

Stephanie Flynt:

Remember the band.

Michelle Bishop:

The Rolling Stones?

Stephanie Flynt:

Yes, [inaudible 00:34:00].

Michelle Bishop:

Oh, I hate it when I know the answer to these. Oh, what’s happening?

Stephanie Flynt:

I think you need to go and watch some Schoolhouse Rock.

Michelle Bishop:

Wow, she’s doing a victory dance y’all.

Stephanie Flynt:

Of course I am.

Michelle Bishop:

As always, you can reach us at podcast@ndrn.org. Jack, how can they follow us on social media?

Jack Rosen:

You can follow us on Twitter, Facebook, and Instagram at NDRN Advocates, we’re also just National Disability Rights Network on LinkedIn. All right, until next time folks.

Stephanie Flynt:

Isn’t it X now?

Jack Rosen:

We’re not doing that. Until next time.