Disability, Pop Culture, and Higher Education – with Kyle Romano

Episode Transcript

Keith Casebonne (00:00):

Want to talk about innovative ways to educate about disability and discuss pop culture at the same time? There's a Disability Deep Dive for that. Hello, listeners, we are really glad you are here. I'm Keith.

Jodi Beckstine (00:36):

And I'm Jodi. We're thrilled to bring you this first episode of our rebranded podcast Disability Deep Dive.

Keith Casebonne (00:42):

Indeed, we are. In case you're not aware, our podcast used to be called You First, the Disability Rights Florida podcast. So if you are a regular listener that explains the change in your podcast feed. I've been here since the beginning.

Jodi Beckstine (00:56):

And I'm the new voice on the mic, but I'm thrilled to be part of this next chapter. We're building on a foundation of great conversations and taking things even deeper. Make sure to subscribe wherever you get your podcasts so you don't miss an episode.

Keith Casebonne (01:09):

Speaking of great content, after each interview, we have a new segment called This Week's Deep Cut, where we'll spotlight a film, book, show, or song that adds even more depth to the episode theme.

Jodi Beckstine (01:21):

Yeah. So make sure you stay tuned after each interview for that.

Keith Casebonne (01:25):

I do want to give a quick shout out to Maddie, our previous host for all the great work she'd done to help get you first on the podcast map. Thanks, Maddie. We know you're out there doing great things for folks in the disability community.

Jodi Beckstine (01:38):

Yeah. Maddie brought real insight and heart to the show. I'm honored to pick up the mic and keep the conversation going.

Keith Casebonne (01:44):

Yeah. And we're just getting started. Same mission, new Energy.

Jodi Beckstine (01:47):

Well, in this first episode, we talked to Kyle Romano. Kyle is a member of our board at Disability Rights Florida. He's also a professor at the University of South Florida where he teaches a course on disability and pop culture. His approach to the class is really unique and you're going to really enjoy hearing him talk about it.

Keith Casebonne (02:05):

Yeah, it's a great discussion. And then after that, we'll talk about the Hulu show, Ramy, and how it incorporates disability throughout each season. So let's dive in.

(02:20):

All right. Hey, Kyle, thanks so much for joining us today for this kind of inaugural episode of our rebranded Disability Deep Dive podcast. We're really glad to have you here, and if you would give us a little brief introduction for us.

Kyle Romano (02:34):

Yeah, thanks for having me as always. Yeah, so I've been on the board of Directors for Disability Rights Florida for... Oh geez, I don't even know how long now. Maybe a year, couple of years, something like that. It's been a while, but I do a couple of other things. I work for a complex rehab technology provider called Custom Mobility located in Largo, Florida. We specialize in custom wheelchairs and wheelchair accessible vehicles, that kind of thing. I do their marketing. I do a lot of public speaking. I do a lot of education specifically about disability, talk to a lot of OT and PT programs, kind of stuff like that. So that's what I do for Custom Mobility.

(03:15):

And then the other job that I have is I am newly a professor at University of South Florida. I teach a class in the Honors college there called Representation of Disability and pop Culture. Where I go through different instances of pop culture, different pieces of BDF. Sorry, my dogs are barking in the background.

Keith Casebonne (03:35):

It's all good.

Kyle Romano (03:36):

But we look at TV shows, comics, video games, movies, books, all of that kind of stuff, representation of disability in those things. And I really encourage my students to be reflective about those things. A lot of them don't have very much experience in the realm of disability, and so my course is kind of a crash course for them. I have to treat it as if it's kind of a disability, 1000 level course where it's an intro to disability. But I'm also applying that knowledge in pop culture and stuff like that. So it's really interesting and I really, really enjoyed it a lot.

Jodi Beckstine (04:19):

Yeah, that sounds fantastic. What inspired you to create the course?

Kyle Romano (04:23):

So I didn't create it. I inherited it from my friend Adam Davidson, who works over in the Honors College as well. And he is married to my boss, Dr. Lindy Davidson. Her and I actually went to grad school together. And she started teaching at the Honors College, and now she is the associate dean of the Honors College. Associate dean, assistant dean, something like that. And so I've spoken with her over the years. We kept in contact with her pretty close friends. And like I said, I'm also friends with Adam and I know their family and stuff like that. And so she has actually been begging me for years to get back into teaching, and I just didn't take the bait on that.

(05:04):

And then I sat on a panel for one of the projects that they have where it's a group... I can't remember what the name of the project is called, but it's a group of students. Well, groups of students are encouraged to create a solution, whether that be an app or a piece of technology or a community kind of outreach program that would help the disabled community in one way or another. And so, I sat on that panel and then got a tour of the brand new Honors college building. And I was like, oh, this seems pretty nice. I might enjoy coming and teaching again.

(05:42):

And she looked at me and she goes, "Well, you know that offer's on the table, right?" And I was like, "Oh, no, I didn't." And so then the rest is history. So I talked to Adam about the course. He was like, "Hey..." He approached me specifically and was like, "Hey, I'm teaching this class, but I think that you would be able to take it to the next level where it should actually be at." So he was like, "I want to surrender the course to you, improve upon the syllabus or whatever it is that you're going to do." And so I inherited the class and I just wrapped on my second semester of teaching it and it went really well.

Keith Casebonne (06:17):

That's awesome. Well, so I personally love pop culture, and I think the idea of a class where disability and pop culture are sort of looked at together. I mean, we've done a lot of episodes on different types of media and movies and film and disability representation that is there, or more often than not, unfortunately not there. So just learning about this class was really fascinating to us and something that we definitely wanted to talk to you more about. So how do you think that pop culture influences public perception of disability? Whether it's maybe examples for the better and also for the worse?

Kyle Romano (06:53):

So, the answer to this question is two pronged. Pop culture influences everything that people understand about anything, right? And it flies under the radar. People don't realize how influential pop culture is to them, and that's kind of the point of it, right? And the other part that people don't realize as well that plays into that is that legislation and the political side of disability rights, also cyclically influences pop culture representation as well. So we saw the, in terms of like historically speaking within the United States, at least after the passage of the ADA, by and large, there was an adoption of person first language, and that was written into legislation and stuff like that. But that bled into pop culture as well.

(07:46):

And so these are how people are learning about disability. Like I said, a lot of my students who have very little to no experience with disability and they see a disabled character in a TV show. And that is their one point of reference. And so that becomes the totality of what disability means to them. And a lot of people don't realize that disability is not just this giant encapsulating thing where no matter the diagnosis, we're all the same and we go through the same things. That obviously is very not the case at all. Me being a quad amputee, I have a very, very different experience than somebody who is paraplegic or somebody who is on the autism spectrum. I do have ADHD, so I can relate to the ADHD and people on the spectrum of things like that really well.

(08:43):

Yeah, it's this misconception that there was this just one monolith of representation, and it's much more nuanced than that. But again, like I was saying, the way that a lot of pop culture is designed is it's designed to have viewership, its audience to kind of make that false definition for themselves, I guess, if you will. And so really encouraging students to go through and being like, okay, let's sit down. Let's think about this representation. Let's not just be spoon-fed what we're seeing here. What is the say about the intentionality of the directors? What is their goal? But then what are the potential ideas that audience members can create from looking at this?

(09:35):

And then the other part that people don't think about as well is that what may seem like a tiny little thing gets exacerbated over time, right? This tiny little one piece of representation, if that's the only thing that a person sees. Like if they only see one character in a wheelchair, like I'll use Artie from Glee. If your only idea about disability or about wheelchair users is from just that one character in that one show, it polarizes the way that individual sees disability, like by and large. So taking those themes apart and really picking apart how all of that influences the way that people come to know... I think the term is ontology. I can't remember exactly what it's, but how we know what we know essentially.

Keith Casebonne (10:23):

Yeah.

Jodi Beckstine (10:25):

Okay. Wow. I would love to have a class like that when I went to school.

Kyle Romano (10:28):

If you're ever in the Tampa area and you want to sit on the class, you're more than welcome to.

Jodi Beckstine (10:33):

Absolutely. Absolutely. That'd be wonderful.

Keith Casebonne (10:36):

Wow, cool all right.

Jodi Beckstine (10:37):

Has there been any moments where it was just so eye-opening for your students or that you could see the light bulb go off where they made the connection in your class?

Kyle Romano (10:47):

Yeah. So I try to do as many, for lack of a better term, hands-on experiences with my students, because that really engages them, right? Engages their bodies and their minds and the activity. This semester, I had the absolute privilege of having I think four guest lectures. I had a really good friend of mine who is a disability attorney, who drove all the way from Venice out to Tampa to sit in for a guest lecture. I had my friend Angel Miranda, who is the owner of a nonprofit called Gamers on the Edge. He came in and talked about video game accessibility and the importance of community.

(11:28):

And then I had my friend Willow, who is an artist, they are disabled as well. And so came in and we did a simulated experience where we tried our best with very obviously limited resources to recreate disabling experiences for our students who did not have disabilities, to show them what it would be like to create art as a person who has those specific kind of limitations.

(11:53):

So like for example, we taped some students' fingers together. I bought Eclipse glasses and we poked little pinholes in them to replicate people who have pinhole vision. I had one person try to draw paint with their mouth, that kind of stuff. And then the really other big eye-opener for them was I, for the last two semesters have had somebody from my work at Custom Mobility come out and bring a bunch of mobility devices. And I tasked my students with getting in either a manual chair, a power chair or a Walker Gate trainer and navigate our building from the seed of that device. And that is always something that really resonates with the students a lot. At first, they're really excited and they kind of treat them like toys. And so I kind of have had to go back and be like, "Hey, you're sitting in a $40,000 power chair, pull your jets."

Keith Casebonne (12:54):

It's more expensive than your car, dude, come on.

Kyle Romano (12:56):

Yes, quite literally. But that experience really resonates with them a lot, and they do a lot of things that I didn't initially ask them to do. So one of the things that they did, for example, was one of the students was like, "Hey, let me see what it would be like to try and get into the bathroom.

Jodi Beckstine (13:14):

Absolutely.

Kyle Romano (13:15):

And so they went and tried and they were, I think a manual chair user. And the doors are weighted super heavy. This also might be like, this is a shot at the Honors College building, but not a shot at the Honors college building because they have a lot of improvements that they need to make to the accessibility. And I'm coming at that from an instructor standpoint, not even from a student standpoint. But so they were marked about how it was difficult for them. And then the stall door for the handicap stall opens outwards instead of inwards, so they can't shut it correctly.

(13:50):

And then I have other students who have difficulty getting into offices and classrooms because the doors are weighted so heavily. Currently there is not an accessible bathroom that has an automatic opener on it either. They're in the process of getting that done, but it's a public university and all the red tape that goes on with that. But it's been really nice, and it's also really good too, because I have some of my colleagues from Custom Mobility there, and they explain the intricacies of the equipment. And we show pictures of some clients and things like that about how they utilize their wheelchairs, because everybody uses their mobility equipment in a different way, in a slightly different.

(14:31):

And then of course, a lot of them don't understand about pressure relief. And so the power chairs that have the power tilt and recline functions and stuff, they'll start messing with that and be like, "Oh my God, this is nice." And I'm like, "Well, yeah, it's nice and it feels really relaxing and stuff." But then I go through and me and my colleagues or me and my boss from Custom will explain, people use this technology because imagine if you couldn't get pressure relief and so then I... That opens the door as well to talk about health and talk about the importance of pressure relief. And the development of skin abrasion and pressure sores. And the importance of even standing for kidney function.

(15:13):

And so it's this one tiny little thing that you look at it from the outside and it's like, oh, these students are just riding around wheelchairs all day. But it really opens up this just amalgamous web of discussion that can take place regarding so many facets of disability. And then they can take that experience and apply it to the representation that they're seeing in pop culture and say, "Hey, now I can see from me using this wheelchair, this wasn't done properly. Or this was great." So it gives them a frame of reference when they did not have a frame of reference to begin with. Which in my opinion is probably one of the most powerful things that that particular lecture could do for them as students.

Keith Casebonne (16:05):

I mean, the course itself is fascinating. I mean by the syllabus, essentially looking at what you guys will be talking about. But I think the way you teach the class is just as interesting, if not in some ways, more so that you're doing this hands-on stuff. And it's really one of the things that makes your class, I'm sure, far more unique than other university classes that talk about disability is that you're including that aspect. So I think that's really fascinating, and again, makes the class unique and people learn.

(16:37):

Of course, when you start talking about it, one of the first things I think about is when you're in grade school or middle school and someone's doing a "disability sensitivity" training. And you were talking about nine and 10 year olds, who to them it's a game. Do they really learn anything? Does any of it really sink in? But I think doing what you're doing with college age students of the more mature, more open to the world around them and understanding of people's experiences and so on. It probably the impact I'm sure is very different and people come out of it with an actual learned experience, more so than the traditional things that we've seen in other schools do with younger kids and that sort of thing. Do you kind of get that same impression?

Kyle Romano (17:23):

Yeah. It's funny you mentioned that because I actually designed the course with that in mind. So there's a concept that I borrow from women's studies called Materiality. There's a specific subsect of women's studies called material feminism. But the concept of materiality is talking about bringing the real biological factors of the body back into the discussion about women's rights, right? And so that's really applicable to talking about disability and disability rights as well. Bringing the discussion of the body back into our articulation about what we... The way that we think about the way that we think about disability, right? So it's very nuanced.

(18:13):

And so my goal for all of that is to kind of show the students, yeah, it's really nice to have this kind of overall general understanding about what we think disability may or may not be. But when we sit down and we talk about like the practicality about it. We sit down and talk about the real lived experiences of disabled people. It's really important to me that when I present that to them, that they get the materiality of disability really kind of ingrained in their minds. And so, a lot of that also involves a lot of talking about disability on the ground, so to speak, in terms... like using an academic term where it's a very grassroots thing, right?

(19:01):

But I mean the disability rights movement in and of itself in America has been a very grassroots kind of movement. And so I wanted to also parallel that with the way that my students learn about disability. So we talk a lot about the body. One of my favorite things to talk about is the concept of embodiment. So for example, somebody who uses a mobility device incorporating that mobility device into their identity, into their body. Like one thing that wheelchair users understand, but non-wheelchair users don't understand is I'll tell them, "I can tell when somebody is actually touching my wheelchair, even the back of my wheelchair, I can steal it." I don't know if my spidey sense or whatever going off, but I can absolutely tell.

(19:48):

And so this concept of embodiment is a real tangible thing that disabled people experience. So bringing concepts of the body back into that discussion. And we can get roped into a lot of this kind of head in the clouds stuff, especially because we deal a lot with talking about disability rights. And a lot of legislation to the typical person seems very flowery and over the top. And it's written also in legalese, and a lot of people have difficulty reading legalese and understanding it. A lot of disabled people have limitations that prevent them from reading legalese and understanding it.

(20:26):

And what was really nice about this semester in particular is that I had a number of disabled students actually take the class. And to hear them say that this class taught them a lot about disability and a lot about themselves and a lot about their own bodily experiences and things like that is pretty much the best compliment that I could possibly get, in terms of that kind of stuff, right? And then giving them the tools and the information so that then they can make their own kind of informed decision, rather than just going off of, oh, I saw Artie in Glee, and this is now the totality of what I understand about disability kind of thing.

Jodi Beckstine (21:10):

Yeah. You had touched on something earlier about how and just now how the totality of someone's disability is what they're seeing in the media. I was very popular. I have dwarfism and I was very popular when a Game of Thrones was out. I did a lot of teaching because of Tyrion, the character. So it's interesting how people are very siloed into what they believe disability is. And I'm interested to see if there's something that is a go-to for you when you're including into your syllabus. Is there an example that you like to return to for media that kind of encompasses what you're trying to teach them?

Kyle Romano (21:52):

Yeah. So I have a couple of benchmark things that I always do. I start the semester by having my class watch the documentary Crip Camp in class. We watched the totality of Crip Camp, and then we unpack that together. And as both of you know, I'm sure, that is a very powerful film, and a lot of these individuals... I feel bad kind of, and then I don't because I'm kind of just throwing them to the wolves, right? Because that's the first thing that we do. We talk about disability history, and then...

(22:28):

So I give them a piece by the author William Steiker, I think, where it's a global history of disabilities and anthropologists. But then we show Crip Camp in class to show them the American history of the disability rights movement here and all of that kind of stuff. And there's always students who are just in tears watching that film. And their reaction is always, "I had no idea." And then there's guilt that sets in with them too. And so we spend a lot of time unpacking, look, there's no reason to feel guilty about something that you had no idea about. The important thing is to learn and to move on. And again, this is why studying history is important. We learned from what we did in the past, and then we're able to move on from that, right?

(23:18):

And so Crip Camp is definitely one of those things that I show at the beginning of every semester. And then another just piece that I show because I'm an anime nerd, I'm a video game nerd. And so, one of my favorite anime of all time is called Fullmetal Alchemist. And I show a clip from that. I don't want to go too in the weeds about what that is because it's kind of hard to explain what it is for people who don't get it. Yeah.

(23:43):

But essentially the story is two brothers who are very, very young, and they witnessed their mother passing away. And they learn this science/magic system called Alchemy. And they do that in order to try to resurrect their mother. And they learn that in order to do that, there's a law of equivalent exchange. And so when they go to try to bring their mother's soul back, it doesn't work. And they experience what's called a rebound, where they actually end up having bodily harm to themselves. Because the alchemy follows what's called the Law of Equivalent Exchange, which matter can neither be created nor destroyed, is one of those kinds of things. And so the point in the anime that the anime and the manga make is that there's nothing that can compensate for the creation of a soul.

(24:42):

And so what ends up happening is one of the brothers ends up losing the entirety of his body, and the other brother ends up losing a leg, I believe. And so in order to get his brother's soul back, the one brother Ed offers up every piece of his body to bring his brother's soul back, which he binds to a suit of armor. So Ed becomes a double amputee. He's missing an arm and a leg, and his brother becomes what I end up calling a full body amputee. Which we don't have the technology to experience yet. But he's essentially a brain in a prosthetic is what it is. And so I always show the clip, and it's a graphic clip because it shows some gory stuff about losing body parts, and that kind of thing. And so I preface them about that.

(25:34):

But I think that that's a very, very important thing to show because again, anime people think that it's like a cartoon. Think that it's like this really lighthearted stuff. And there are a lot of really heavy things that transpire in anime. But in particular, there are a lot of really important social critique that go on within anime. And so within Fullmetal Alchemist, there's this really interesting conversation about the body that takes place. And also this is written by a Japanese woman. And so the idea about disability is very different to a Japanese person than it is to an American person, right? And there's a lot of their own history involved in that.

(26:18):

And so we see glimpses about what Japanese culture thinks about disabled bodies. And so, the whole point of bringing all of this up is that the entire purpose of the anime is that the disabilities of Ed and Alphonse Elric act as actual visual markers of the sin that they committed. In the anime, they call it a sin, which is really important because that ties back into disability history. Like a lot of times back in Greco-Roman times, it was thought that a person or a child became disabled because their parents or their ancestors sinned. And then we see that also in Judaistic text in the Torah, and also in Christian texts, in different books in the Bible and things like that as well. Things kind of change.

(27:08):

But it's a critique on that, where disability is viewed as a marker of sin. And so the entire plot of the anime is Ed and Alphonse Elric trying to get their "original bodies" back. And so what is that say for disabled viewers that watch that? It makes people, myself included, feel like the disabled body is this transient entity that we should never be okay with. We should always strive to transcend our disabled limitations. And the author of Fullmetal Alchemist doesn't do that in terms of like, "Hey, yes, all disabled people should do this and this is the right way to go."

(27:54):

Again, it's a very nuanced conversation. The anime is very nuanced, and so it's very much a critique of that idea. But I have not really ran across another example in pop culture that is that in your face about how society... And not just American society globally, this is how a lot of people in a lot of cultures think about disability. There is still this conception that disability is like a marker of sin. I tell people all the time that we went from being locked in literal basements to now we're kind of locked in figurative basements. And so, pieces of literature and media like Fullmetal Alchemist Brotherhood really take that and again, shove it in viewers faces. And encourage people to think about, okay, what do we think about what makes it a good body, a good body? What makes a bad body a bad body? What does functionality mean? How does that contribute to our conception of what makes a good or bad body, a good or bad body? So that's another go-to that I absolutely show every semester.

(29:09):

And then another anime is called a Sign of Detection that I like to show as well. It's a female disabled protagonist who is deaf, and it's about her navigating social sphere, but also love interests. But obviously she uses sign language to talk, and it's really, really cool because I don't know if they've done Mocap or what it is. But the sign language within the anime is actually real, like Japanese sign language.

Keith Casebonne (29:43):

Oh wow.

Kyle Romano (29:44):

So if you speak Japanese sign language, you can watch it and not read the subtitles and you can understand what the characters are saying.

Keith Casebonne (29:51):

Oh, that's cool.

Kyle Romano (29:51):

Which is a really cool attention to detail. Then I think more and more creators and producers and things like that are starting to do things similar to that. Which is very promising to me in thinking about what the future can hold for disability representation.

Keith Casebonne (30:09):

Wow.

Jodi Beckstine (30:10):

Absolutely. Wow.

Keith Casebonne (30:11):

Yeah, for sure, that's incredible. I had heard of Fullmetal Alchemist, but I have not seen it, so I'm sort of making a mental playlist in my head of things to catch up on like that.

Kyle Romano (30:23):

Watch Brotherhood, don't watch the regular one. Because Brotherhood actually follows the manga, which is what the Canon. And then the original anime wet off the rails, and as a result of that, there were important main characters that weren't even in the original Fullmetal Alchemist.

Keith Casebonne (30:42):

Got you.

Kyle Romano (30:42):

If anybody's watching as well and listening, watch Fullmetal Alchemist Brotherhood. Don't watch the original or read the Manga one of the two.

Keith Casebonne (30:49):

Yeah. I'm glad you mentioned that. I'll definitely make sure to do that. And for those people that think anime is just cartoons as you put it, I mean, there's a whole world of very amazing anime out there. So if you're listening and you've really never given it a shot, you should

Jodi Beckstine (31:05):

Absolutely.

Kyle Romano (31:06):

Yeah, 1000% agree.

Keith Casebonne (31:08):

Yeah, for sure. And I think you've touched on this a little bit throughout, but tell us a little bit about how you see your role as both an educator and someone with lived experience. And how that shapes your work and your teaching style.

Kyle Romano (31:25):

Yeah, so part of the reason why my friend Adam asked me to teach the class, him and Lindy have a disabled child, and so he has that experience. But for him in particular, his whole thing was that he wanted somebody with the lived experience to be teaching that class, right? He told me in his mind that the more he thought about it, the more that it just made sense to kind of like, not surrender the class, but to give the class to somebody with that direct lived experience, right?

(32:03):

And so the really awesome thing about my lived experience as an instructor is that I've gone and I've done legislative activist work with Disability Rights Florida. But also with Custom Mobility and also with the National Coalition for System and Rehab Technology. I've gone to the Capitol in Tallahassee. I've also gone to the Capitol in D.C. And so I have a lot of lived experience with activist work that way. Also, my day-to-day experience with Custom Mobility working for their marketing team, also going in and having these discussions with OT and PT programs. About what the actual lived experience is for disabled people.

(32:46):

And I think that's something really, really important in the conversation that unfortunately has been really lacking in a lot of areas. Academia being just one of them, but as a direct offshoot to that medicine in general. People will a lot of times just go around Robin's barn and make a lot of assumptions and then create something. And be like, "Hey, I think that this is really great." When all that they should have done was just approach disabled people and ask us what we think needs to be done. Because again, we are the people that live those experiences, right?

Jodi Beckstine (33:19):

Right.

Kyle Romano (33:20):

And so the other part about that has been really, really nice is that I have been able to take my lived experience with my network that I have fostered and developed over the years and provide that to my students. I'm giving my students access to resources that took me 20 years to accumulate. It took me that long to go to get my masters to then start working at Custom Mobility to then go off on my own way. I have my own podcast for a little bit where I unpack disability stuff as well. And then going and teaching and things like that. And so I really feel like everything that I've experienced up to now in my life has really led me to becoming an educator.

(34:17):

The other reality that I tell my students as well is I'm like, "Hey, okay, you all opted to take this class. I don't know why you did." So we go around and we figure out why. And of course some people take it to just fill a credit or whatever. But a lot of the students end up taking it because they want to learn more. And so giving them really the ability to kind of, I guess dictate what the pace is. Well, I mean, I do a little bit because I'm the teacher and I'm like, "You're going to do this or else you're going to get a bad grade." But really, I try to give them the opportunity to drive the class as much as they can.

(35:01):

Because by involving them as much as I can, they will learn and remember that much more out of the experience. Than if I were to just get up there and, "In 1990 the ADA was passed, capital Crawl." They're not going to get that much from me just going up there and dictating that. Rather I can show them videos of people literally crawling up those steps, right, during Capital Crawl and things like that. And that has a real lasting meaningful impact, right? And so media can't be a bad thing, but it can also be a really good thing and it can be a really great teaching tool.

(35:44):

And so kind of reframing how I have thought about media, what I have thought about pop culture, and being like, "Okay, let's take a step back. Let's look at the nuance of disability and let's see how we can use pop culture as that entry way to help students feel comfortable enough to have discussions about disability. And to be quite frank, I have a lot of students who when I start the semester, are actually afraid to say the word disabled or disability.

Keith Casebonne (36:23):

Really.

Kyle Romano (36:23):

They have told me that specifically. And so I have to sit there and have a discussion with them because they also told me, "Well, I don't want to say that because I don't want to offend you." And so I tell them, I want us to have the potentially offensive conversations within the parameters of this class because this is a safe space. We're not going to jump down each other's throats. If somebody gets offended, we're going to unpack that. But nobody is going to come at you. Nobody is going to attack you.

(36:55):

The issue that we end up having is that people don't talk about disability. We need to talk about it. If our kind of, again, I use ableist terms of phrases all the time. If our knee-jerk reaction about disability is to not talk about it, we're going to fall back into this landslide of not including disabled people in the legislation that is going to afford us disability rights. We're going to exclude disabled people from weighing in on representation of disabled characters in the media. We're not going to have disabled people have the ability to talk about and open the conversation to have disabled bodies within commercials for Target and things like that as well.

(37:51):

And so people really, I guess part of what my goal is for the course is to understand that, again, it may just seem like a commercial to somebody, right? But really, again, like I mentioned, windows and doors, those commercials, those TV shows, those movies, video games, whatever the case may be, are windows and doors into a much more profound conversation. And at the base of that conversation is disability rights. And a lot of people also don't understand that disability rights are civil rights.

Jodi Beckstine (38:34):

Absolutely.

Kyle Romano (38:35):

And that is an inalienable, right, that all disabled people should be afforded. Again, this is an extremely important concept, and a lot of my students in the beginning of the semester don't even realize that that's a thing. So how do we educate people who are going to graduate and go on to be engineers, be doctors, who are going to have direct impact on the lives of disabled people without having any knowledge about disability? And again, it all comes back to early exposure, right? It's important for children to see children's shows in cartoons and things like that with disabled characters.

(39:22):

To get kids curious and not in an ableist way. To get them curious in a, oh, I never thought about that this way. Oh, Kyle looks different, and he uses a wheelchair. I never saw that before. Mommy, what is a wheelchair? We need to be having these conversations with everybody, especially at a young age. And so, I'll knock my soapbox about all that. But it's super important that people really take for granted how cyclical the communication is and how dire, I would say, every stage of that communication really becomes.

Jodi Beckstine (40:01):

Wow. Yeah. We're going to start wrapping it up, but I wanted to talk about a little segment that we are starting now with the new rebranding of the show. It's called The Deep Dive, and we're going to be taking some media, whether it be a film, TV show, book, musical artist, and really dive down deep into what that means for disability. And so I wanted to ask you, is there one piece of media film, show, book, whatever, that really flipped and changed how you thought about disability?

Kyle Romano (40:34):

That changed how I thought about disability. I don't think that already is good representation necessarily, but I think for me, probably Glee. Because I was so much younger at that time, and up to that point, I didn't remember seeing a wheelchair user as a main character in a show, ever. So that I think really got me curious. And then my initial idea for my master's thesis was actually to write about the representation of disability in the Fullmetal Alchemist manga. So that was the other thing that really pushed that for me, was Fullmetal Alchemist, how bodies are represented and talked about in that.

(41:28):

And then a little bit later, and again, I know I'm a weeb, so all anime and video games for me. But another one that was really, really pivotal to me as well is a romance anime called Fruits Basket, that really deals a lot with invisible disability trauma. How that ends up manifesting in anxiety, depression, PTSD, CPTSD. So that was another really powerful thing that kind of reshaped my reshape of reshaping the way that I thought about disability, if that makes any sense. So those are really the three.

(42:15):

And then of course, now, if I were to say the one current thing would be Crip Camp. About, if you don't have knowledge about the American Disability Rights Movement, that really kind of just forces you to recognize the atrocity that we've experienced throughout American history. And then hopefully gets you curious enough so that you start delving into American and global disability history. So those are the three things I would think.

Jodi Beckstine (42:47):

Fantastic.

Keith Casebonne (42:49):

Yeah. Wonderful. All right. Well, Kyle, it's been really great to have you here. I think you've talked about some really incredible things, and I love the aspect, the nature of this class and how you're teaching it and what makes it different from other classes. I think that's all really fascinating. So I really do appreciate your time with us today and allowing us to interview you.

Jodi Beckstine (43:10):

Absolutely. Thank you.

Kyle Romano (43:11):

Yeah. No, I'm super appreciative of you guys allowing me this platform to come on here. I love talking about this stuff. Technically, I do it for a living anyway. But also I would like to say too, I'd be more than happy to come back on the show, even if it's not acting as a guest, but even as an expert in this arena or that kind of thing, I'm more than happy to. I love DRF. I wouldn't be on the board if I didn't love it. So anything that you guys need from me, I'm more than happy to be here and be involved.

Keith Casebonne (43:46):

Wonderful.

Jodi Beckstine (43:47):

Wonderful. Thank you so much.

Keith Casebonne (43:48):

Yeah, thanks so much, Kyle. I appreciate it.

Kyle Romano (43:50):

Yeah, thank both of you very much.

Jodi Beckstine (44:06):

Before we get started, just a quick heads up. Ramy is a show for mature audiences. It contains content that may not be suitable for all listeners. Including topics about religion, sex, mental health, and disability. If you decide to watch Ramy, we recommend viewer discretion.

Keith Casebonne (44:23):

This week's Deep Cut takes us to Hulu's Ramy, an American comedy-drama television series that premiered on April 19th, 2019. Ramy is a semi-autobiographical series from comedian Ramy Youssef, that for three seasons explored faith, identity, and the messiness of being caught between cultures. But tucked within that narrative is something we don't see nearly enough on TV, a genuine disability representation.

Jodi Beckstine (44:51):

And that's where Steve Way, an American actor and comedian comes in. He plays Ramy's best friend on the show and lives with muscular dystrophy in real life. His role offers something rare, a disabled character played by a disabled actor. And in doing so, he does it with nuance, honesty, and humor.

Keith Casebonne (45:08):

There's a lot we could say about Steve Way's character, but let's start with the basics. Just watching him on screen, there's something that immediately feels different. So I'm going to ask you, Jodi, what stood out to you most about Steve Way's character in Ramy?

Jodi Beckstine (45:23):

What stood out to me about Steve's character is it's not written to inspire pity, or just applause. He's a person, he's funny, intense, and he pushes back. I feel like a lot of times characters that are disabled are usually just observers to the world around them, and he's not like that. He's center in what's going on in the story. And I think it's so different and so important.

Keith Casebonne (45:56):

Yeah, for sure. He's not filler, he's not the sympathy character or whatever, he's... Yeah, when he's on the show, he impacts the plot. I mean, he's an important character. So how does his portrayal challenge some of the typical disability tropes that we see on TV?

Jodi Beckstine (46:15):

I like to think his relationship with Ramy is more of a partnership. There's an interdependence with them, not just this disabled friend that's dependent on Ramy. I think they depend on each other, and that's an important part of the disability experience, and it usually doesn't get portrayed that way. It just feels really honest, and there's not this nobleness to their friendship that you see a lot.

Keith Casebonne (46:47):

Yeah. What I think helps with that too is that in real life, Steve and Ramy are great friends. They've been friends since, I forget, I think it was like fifth or sixth grade or something. They've been friends for a long time, so that certainly helps the authenticity.

Jodi Beckstine (47:04):

Absolutely. I think they hinted at it a little bit on the show, how they met. It kind of mirrors their real meeting, and the fact that they're still friends years later, I think it makes it so real that they're not just two people playing characters, they're really... it's their friendship just kind of showing up on screen.

Keith Casebonne (47:26):

Yeah. Yeah. So I mean, speaking of why is it important to have disabled actors play disabled characters?

Jodi Beckstine (47:34):

Because of the lived experience, I think. You can read about things. You can watch things, but unless you've lived something, it's really hard to really be honest and real in your representation. I think it's something we don't see a lot of, and it's something we really need to see more of, just so again, it doesn't become a trope. It's something real and honest.

Keith Casebonne (48:00):

Yeah, yeah, for sure. I mean, I feel like a lot of the storylines that involve Steve are these real like... They're portrayals for sure of aspects of disability that we do not see on TV. And as we mentioned before, it's an adult theme show, and some of the themes are very much adult themes, but they're real. They're real life things that to some degree, everyone struggles with. But then it shows how it's different in his case, because of his disability. And it's just, I don't know. Yeah, it's just real. That's the way I can think to put it, is it feels real.

Jodi Beckstine (48:39):

Yeah. I suffered sometimes from secondhand embarrassment, and there are a lot of times where I was, I would feel that because it is so real. And you understand it. It's something that for me as a disabled person, it's something I don't usually talk about. And to see things portrayed in such a real way, it does make you kind of go, "Oh, people may not understand that." I understand it, or someone with the lived experience understands it. But to kind of just see it out there sometimes could be a little shocking and a little... it makes you take a double take and go, "Oh."

Keith Casebonne (49:14):

Yeah. Oh, for sure. And then Steve also does a lot of other work advocacy type work behind the scenes. What do you think of some of that work that he does and how that adds to the whole conversation?

Jodi Beckstine (49:28):

I think that it's so important that, I like to use this phrase, making sure everyone's at the table. I think it's so important that disabled representation happens behind the camera. They help shape the story, and they're not just filler. They're not just, let's put this here for the sake of doing it. I think by them being there, it shifts the presence and leadership. It shifts that narrative of what they're trying to say, and keeps it, again, we keep saying honest. It keeps it honest. It keeps it real.

Keith Casebonne (50:06):

Yeah. I mean, I think it's just the best words, honest and real.

Jodi Beckstine (50:09):

One of the things I wanted to talk about is Steve's character is one of the clearest portrayals of disability on the show. But Ramy and some of the other characters navigate some mental health issues in some pretty dramatic ways. How do you feel about how mental health was portrayed in the show?

Keith Casebonne (50:27):

Yeah. So in the second season, they talk about PTSD a lot. There's some really dark, powerful content related to that. And I think it's an important topic in and of itself. But even more throughout, it feels like Ramy and his sister Dina, are going through a lot of struggles, sort of dealing with family and identity. And how that sort of sometimes doesn't go in line with their faith, because they're Muslim. But they're in America and they're trying to sort of navigate all that.

(51:09):

Their parents are kind of old school when it comes to certain things. And they're obviously young adults in America having grown up in America. Their parents are immigrants, but they were born in America. And so there is that duality there that they struggle with. And I know that sounds like, oh, we all sort of struggle with things like that. But they really dive into it a lot. And it feels like these are some... It shows how these challenges are unique for them because of their cultural and religious differences and how they navigate that sort of day to day.

Jodi Beckstine (51:50):

Yeah. It was interesting how their family was supportive in some ways and dismissive in other ways. And that it's a big reflection on how complex the conversations are, especially in families, especially across generations and culturally. I really, really like that a lot.

Keith Casebonne (52:12):

Yeah, I did too. There's a great episode, and there's no spoilers here really. But there's a great episode that deals with Ramy's sister, Dina, getting counseling, seeing a therapist, and going to this group session and... But the problem is that this counselor's not culturally sensitive. It's a white Western person. They don't say this, but you assume a Christian or just a traditional stereotypical American.

(52:46):

And trying to provide therapy and group and role play, and it all just goes so wrong. Because honestly, this therapist, while maybe well-meaning doesn't have a clue about the cultural issues that really shape what's going on. And so I thought that it was a really powerful thing to bring up. And something that, I certainly don't think about it on a day-to-day basis. But it shows how much it matters.

Jodi Beckstine (53:19):

Absolutely. And each episode doesn't wrap up in this nice little bow where everything gets resolved and we moved on to the next thing. It's dragged through, it's messy, and it just keeps unfolding as the season goes by. And I really appreciate that because life doesn't wrap up in 60 minutes. And so I appreciate the fact that they just they went into it and stayed with it and just let it carry through.

Keith Casebonne (53:48):

Yeah, yeah, for sure. I mean, it shows the imperfections that, well, we all have. And like you said, it doesn't just like everything's solved at the end and everyone's happy. I mean, very often episodes end kind of tragically in some regards. But certainly without the protagonist of the episode feeling like they've really gotten anywhere, and if anything spun their gears and they're back to where they started, honestly-

Jodi Beckstine (54:21):

Absolutely.

Keith Casebonne (54:21):

... not sure really what the next step is.

Jodi Beckstine (54:24):

Yeah. I think those imperfections in the characters and in the story is what resonates with viewers. It resonated with me. They don't give you the answers, but they give you the space to kind of keep asking those questions. And questions you hadn't even thought of before, which was... I enjoyed that very, very much with the show.

Keith Casebonne (54:45):

Yeah. Yeah. Same. Well, before we wrap up this week's deep cut, just another reminder that Ramy is ready to TVMA, so it's definitely not for kids. The show dives into some heavy and complex themes, including sex, religion, mental health, so viewer discretion is advised.

Jodi Beckstine (55:03):

And if you're interested in learning more about Steve Way, the actor who plays Ramy's best friend and brings real life lived experience to the role, you could check out his work at www.thesteveway.com. You could find Ramy streaming now on Hulu.

Keith Casebonne (55:18):

Yeah. We hope this gave you a new lens on what representation can look like when disabled voices are truly part of the story. Well, that about wraps up our first episode of Disability Deep Dive. Thanks again to Kyle Romano for being our guest today.

Jodi Beckstine (55:38):

Absolutely. If you enjoy this episode, make sure to subscribe to Disability Deep Dive wherever you get your podcasts. You can also find us at disabilitydeepdive.org. If your podcast platform of choice allows for reviews, we'd love to hear from you there.

Keith Casebonne (55:53):

Yeah, we sure would. And we'll be back in two weeks with a new episode. See you then.

Announcer (55:59):

Disability Deep Dive is produced by Jodi Beckstine, Keith Casebonne, and Disability Rights Florida, Florida's protection and Advocacy Agency. You can learn more about the services we provide, explore a vast array of resources on a variety of disability related topics, and complete an online intake at disabilityrightsflorida.org. Any comments about the podcast can be sent to podcast@disabilityrightsflorida.org. Thank you for listening to Disability Deep Dive.