Episode 4: Albinism and the Entertainment World

Esther Rosi-Kessel: For many people, media, like movies and TV shows are a major way that people learn about experiences different from their own, and also to see their own experiences reflected in the stories they see on screen. But how can we make sure that the experiences portrayed on screen actually reflect the stories that they are depicting?

Hello, and welcome back to Albinism More Than Meets The Eye, a podcast that explores the realities and lived experiences of people with albinism. I'm your host, Esther Rosi-Kessel. Today I'm talking to Dennis Hurley, an actor and comedian with albinism . He's the creator of the short film, the Albino Code, which satirizes the albinism representation in Dan Brown's 2003 novel, the Da Vinci Code, as well as the 2006 film of the same name.

For those who don't know, the antagonist of the Da Vinci Code is Silas, an albino monk and assassin, played by Paul Bettany in the film adaptation . Dennis also played Roger in several episodes of NBC' s Superstore, and he was featured in the music video for Justin Timberlake's . Can't Stop the Feeling. In this episode, we'll go into albinism representation in the media and how representation affects the public's perception of albinism.

And now let's go to Dennis Hurley. 

Welcome to the podcast. Can you start by telling the audience a little bit about yourself? 

Dennis Hurley: Absolutely. I'm Dennis Hurley. I'm an actor, writer, producer. I grew up in South Shore Mass and I've worked in both the Los Angeles and New York markets on stage, television, and film.

Esther Rosi-Kessel: Great. Can you tell me a little bit what it's like to be in the film and theater world as an actor with albinism? 

Dennis Hurley: Absolutely. We, I have such a distinctive look. I'm a Caucasian person with albinism and I have been at many auditions where through my headshot, through the picture. Some people think that I'm older than I am , Just because of the, the white hair. But once I'm in the room auditioning in person or I send them a tape, uh, a link to a video, then they know, they know that I'm not as old as they thought I was. And I would also say being an actor, um, especially early in my twenties when I was in New York City, it's very overwhelming because it's, it's, it's a stressful schedule and.

There's lots of things that need to change on a dime and very quickly. So it's such a fly by your seat of your pants crazy schedule that sometimes I just forgot that I had albinism and I, and it took some people a minute to catch up cuz they didn't know what that was, what the condition meant. And if they were curious, it was like, oh yeah, I can tell you about that.

But, uh, especially then in my twenties in New York, I was just, Busy and so focused that I just forgot even that I had albinism. 

Esther Rosi-Kessel: Yeah, that makes sense. So Hollywood likes to have a certain idea of what albinism or you know, what an albino is. Can you talk a little bit about what is Hollywood's perception of albinism as of the past, I don't know how many years? 

Dennis Hurley: When I made my parody of the Da Vinci Code, the Albino Code, my sort of comedy Mel Brooks take on the DaVinci code. I did even more research into it and I was already aware that that a lot of albinos played mythical creatures and a lot of times evil. But I found it, it usually fell into three categories in terms of albinism representation in movies. One, the creepy loner, two, the evil, sometimes magical villain . Or three, the butt of a joke or a punchline, as in Me , Myself , and Irene.

Esther Rosi-Kessel: Yeah. So the Da Vinci Code has a character who is a monk, who is also a sharp shooter, which, if you know anything about albinism, you know that we can't see very well, and that just wouldn't work very well. I tried watching the Da Vinci Code as part of my research for this project.

I just couldn't really get through it. Um, but you did a parody of the Da Vinci Code . In 2006 called the Albino Code, which kind of played off of the, uh, stereotypical idea of Silas, the character from the Da Vinci Code, but adding in the actual real life things about albinism, like the vision and getting sunburned, not being able to drive 

Dennis Hurley: exactly.

It almost wrote itself, I will say, because when I read the book, I was reading the book and, and um, I was like, oh, I could be up for that rule someday. Who the heck knows. And I was reading and he was like driving at night and he didn't even have glasses or any kind of visual aid, and I was like, oh my gosh, this is already funny to me.

So I wanna make my own like Mel Brooks style, uh, comedy version of this, cuz it's, it's, it just lend itself so easily and yeah. He was portrayed kind of as the, the creepy villain and the shadows. So, and I was like, wow, this has been done a lot as, as I look. 

Esther Rosi-Kessel: Mm-hmm. So how do you think the media representation of albinism like impacts, uh, the general public's view of albinism?

Dennis Hurley: I will say it's just like people don't know a lot about it cuz it's like the statistics are, your odds of getting albinism are, are like one in 10,000 or something like that. 

Esther Rosi-Kessel: I think it's closer to one in 20,000. 

Dennis Hurley: Oh it is? Oh wow. Yeah. 

Esther Rosi-Kessel: Well, also depends on the country. 

Dennis Hurley: Oh, right. That's, that's. Interesting statistic, and but to, to answer your question, I, I f I feel as if there's not a huge spotlight on it.

So when, when people meet me, it's, it's almost like, oh, but you don't have red eyes. And it's like, well, that is true for some, but it's a, there's a huge spectrum of pigmentation and, and different afflictions. I will say that it, it kind of has shifted a little bit. I, I feel like, like, uh, Ryan Murphy cast, uh, Sir Maejor as a bodyguard in American Horror Story, and he, he didn't really fall into those categories of, that I said earlier.

So, I mean, who knows? I, I don't see the shift coming from those three stereotypes in a big way, but I kind of see it in small ways. Yeah. 

Esther Rosi-Kessel: There's also some issues with like, uh, not casting actors with albinism as characters with albinism. Like, for example, the Greatest Showman. Those characters aren't, from what I could tell, they aren't necessarily any sort of like stereotype. They're kind of background characters, but the fact that they're played by normally pigmented actors just is a little weird to me, right? 

Dennis Hurley: It, and it's become stranger these days. It's, it's become more the norm that, that representation is important, which is a great thing. But back when I was making the Albino code, it wasn't thought about as much the, the representation.

Like, I remember Paul Bettany was on like a late night talk show, and, and he was like, oh yes. Um, last month I was playing in albino and uh, and, you know, no, no one thought anything of it. And I remember when I. My parody and. This was like 06, so before YouTube, but like people were just starting to watch more like video comedy videos online.

And there there was a Paul Bettany fan forum and they're like, oh, he's just jealous. He's just jealous of Paul Bettany cuz he wanted to role and he didn't get it. And, and then they quickly realized, they quickly realized, like, da Then the comments further down were just like, oh no, he's just having fun.

He's doing like a a Peter Seller's. Like Austin Powers type sendup. It's all, and it was, and it was, it was all in good fun. Like I, I, I had, I mean, I had my own thoughts about the movie itself, but I was just like, I, I'm just having fun here. I think it's like really important that the shift is happening, that people are realizing that you need to have representation by the people who it's about.

Esther Rosi-Kessel: I've found a lot of the media that I've been using to research for this project, the good representation comes from people who have experience with albinism instead of, you know, people who might just know the word albino and think pale person with red eyes. So I think another thing that, I'm not sure if you've seen this, but that I've, um, got the impression is that people might see like an albino character and they think, That is an albino. And then if they meet someone in real life with albinism, they don't really get that. That's like the same thing. There's sort of a disconnect there. 

Dennis Hurley: Yeah, definitely. Uh, like most people when I meet them and get to know them, like I don't, I never thought of you as, as albino and like, like I said earlier, like cuz of the red eyes thing, that's like one of the key things that people thought that all albinos had red eyes and it's not.

I find, yeah, a lot of people said like, oh, I just thought you were like Norwegian or, or Eastern European. 

Esther Rosi-Kessel: I have like darker hair. So most people have this idea that albinism is always like pure white hair. And so like, there's also, there's a teacher at my school who has albinism and so like when I was talking to my mentor who's like helping me with this project, when I told her I had albinism, she was like, oh, I never would've thought, cuz you don't look like anything like this other person.

I have no issues with that. But also, This is something that I think people need to realize that it doesn't, it's not just one look. And I think that when films and TV shows show just one thing, people aren't gonna understand that it's more than that. 

Dennis Hurley: It's true. And that was, that was another, I mean, my main goal with my parody film was to make people laugh.

Of course, that was like goal number one, but it was also like, Hey, we're over here too and we can be silly and we, we don't all look this one certain way. Yeah. Yeah. 

Esther Rosi-Kessel: Have you seen change happening since you've been in the film and theater world in how. albinism is Portrayed in media, even with your own roles?

Dennis Hurley: I've seen, I've seen really small changes here and there.

Like I said, uh, Sir Maejor playing the Bodyguard, American Horror Story. There's a movie called Disturbing Behavior where the, again, he's like a creepy loner, but I, I do think that he was albino. Not a hundred percent sure about that as I did the research a long time ago. But no, and then I saw there was an episode of what would you do on ABC, where they had an actual actor with albinism and that show they, they tried to like point out bullying with, with hidden cameras and stuff.

So it was just like, and he was an actual albino. So it was, it's good to see that. Um, so I see it in small ways with myself. I mean, I've always felt having albinism as a, as a performer, especially an actor, is a double-edged sword. Like, on one hand, you know, I'm never gonna fit that mold of like, he's a leading man, he's a Ryan Gosling, but on the other hand it's like, oh, he's, he doesn't look like everybody else.

So it's like he is striking because it's so different from, from anyone else that, um, Assume that maybe sometimes I've been cast because of that. Because it's like, I mean, it's different. So what I, what I think of, I, I think of an old story about how when Danny DeVito was starting out, when he was starting out in theater, like a lot of people just said like, he doesn't, he, he's just such a, Strange looking person that I don't know what will ever cast him in.

And then, you know, he just kind of became his own thing. So that's kind of what I think about sometimes. 

Esther Rosi-Kessel: Do you think that albinism should always be like a main part of characters? If you were playing a character, would you want them having albinism to be a focal point of their character, or do you want it to just be something about them?

Dennis Hurley: I, I would be open to either one of those, honestly. I actually like, kind of just disappearing into whatever character's on the page and whether, whether it points it out or not. Like I've played different roles, like, like when I was on Superstore on N B C that was written into the text. It was like, oh, we're gonna, we're gonna call this out. Like the first episode I did, when I just poured nacho cheese into a dumpster. That was, that was really the only joke of that. But the next episode I did, it was an HR meeting and the writers leaned into it, and they didn't ask me for my input, but they did, they did treat it with sensitivity, which I, which I did like, and so I, I'm happy either way, whether, whether I'm, whether my character specifically is, With, with albinism in mind or not, so either one.

Esther Rosi-Kessel: What do you think writers should consider when they're writing characters with albinism? 

Dennis Hurley: I mean, do your research. I mean, just cuz the, the Dan Brown thing was, was so. Easy for me to, to parody because it was just like, it's at night and he's, he's like, he's, he's an assassin with a gun. And it's like, wow.

Like I've met a lot of people with albinism in my day and, you know, not one you would ever pick to be like a, an assassin. Not that it's not possible, but, but it's not the first thing you go to. So, I mean, luckily, There's a lot of people out there making documentary films. There's a, there's a guy named Rick, Rick Guidotti , who you may have met.

He has a doc, a mini documentary. I don't know if you've seen it, about people with albinism. And he's showing it in, in different schools and medical facilities. Yeah, I think, I think that's, that's a step in the right direction. 

Esther Rosi-Kessel: My final question for you, which I'm asking everyone that I'm interviewing is, what is one thing you wish more people knew about life with albinism?

Dennis Hurley: That's such a great question. What I'd like them to know is, is that like with our particular affliction, it's, there's such an irony to it of being someone who's easily spottable from far away, but I can't see them. So on college campus, like I would be on the other side and I'd hear like, Hey Dennis.

And I'm just like, Hey, you person. It's like I, I want them to know, no, I'm not a jerk who just doesn't remember who you are. I'm like, I just. Can't see you from this far away. 

Esther Rosi-Kessel: A couple months ago I was in an airport with my mom and she was like, oh, there's a kid with albinism there. And I was like, oh cool.

But you can't point out a person with albinism to another person with albinism cuz we can't see them. And then she thought that was the funniest thing I would ever said. And this was like a little after the albinism conference. So I had just come from, you know, making that kind of joke all the time. Cuz I don't normally, I don't talk about albinism with my family just because it's like, you know, Always been a thing.

Dennis Hurley: Yeah. Yeah. Same here. I've got, I've got two brothers who have albinism and it's just, it's like an afterthought.

Esther Rosi-Kessel: Yeah. So when I made like an albino joke with my mom, she was like, you're hilarious. This is so funny. And I was like, okay. But yeah, no, that's, that's definitely, um, a big thing is that can't see each other even though we are recognizable.

Dennis Hurley: Yeah. And it's just like the, I don't. How quickly it can just get to like, people think I don't remember them because I'm a jerk. And I'm like, no, no. It's just, I don't, I don't see, I don't have a sharp eye, so I don't remember. And another thing is, no, I'm not, I'm not angry. I'm just squinting. 

Esther Rosi-Kessel: So I wear, um, transition lenses, which means that when I'm outside, no one can really tell what my eyes are doing.

But like, I think otherwise I would definitely. Visibly squinting everywhere. 

Dennis Hurley: Oh yeah. It's like that's, that's what I want people to take away. I'm like, if you ever not mad, just squinting. I'm not angry. I just have a furrowed brow cuz I'm trying to read something. Um, I didn't forget your name. I just can't see you from here.

And like another one is, no, I didn't, I didn't, I'm sorry. I didn't mean to cut you in line. I just didn't. There was a line, my, my, my death perception is not, um, on point. Yeah. 

Esther Rosi-Kessel: So thank you so much for coming on this episode and talking to me. Yeah. I hope my audience learned something new from this. 

Dennis Hurley: Thank you.

Esther Rosi-Kessel: I hope you enjoyed this episode of Albinism More Than Meets the Eye. Again, that was Dennis Hurley For more details about some of the topics we talked about in this. Or for a transcript of the episode, be sure to go to meetstheeyepodcast.com . If you like the episode, please leave me a comment or a review. I'd love to hear from you. Thank you for listening!