Speaker 0 00:00:03 Welcome to freewheeling with carton. This podcast, cheers stories of people with various disabilities and shines a new light on accessibility topics. Our goal is to knock down barriers so we can roll through life a little easier and build a community to do this together. Please rate and follow this podcast protects cart at (470) 588-1215. With comments and suggestions. We welcome you on your journey towards inclusion for all. And now your host card and white cop global disability advocate and wheelchair warrior
Speaker 1 00:00:35 Edward Pace, and has directed over 200 commercials all over the world. He has directed feature films that have gained worldwide distribution in the horror genre as well as two feature-length documentaries, his newest film being the documentary. Our friend, John, before John Hernandez passed away due to complications stemming from sickle cell anemia. He was writing a horror film. He wanted to make with his friends, um, Han his untimely death, his friends, all of whom have disabilities decide to make the film in John's honor, even though they have no clue where to start. This is that story. The film is monumental because it gives true disability representation in the industry, real people with disabilities and not actors playing a role of a character with a disability. Edward mentions in the episode that less than 2% of films have true disability representation, and this film helps to bridge this gap.
Speaker 1 00:01:35 You can find the documentary, our friend, John streaming on Amazon prime and on Vimeo demand. I welcome you with the director, Edward pasen. Welcome back to another episode of free, willing with carton. I have Edward paisan here, who is the director of a disability centric, film, our friend, John. Welcome Edward. Thanks for having me. And I'm so excited to have you in here because I really wanted to talk about disabilities in the media, especially in film because I don't think there's a lot of representation. And when you filled out my request form, I was like, this is a great topic to talk about. So tell me a little bit about the inspiration behind the video and just how you ended up turning it into a whole production.
Speaker 0 00:02:29 Sure. So back in 2013, Jonathan Hernandez had lived with my brother and he was really close to my family. So when I moved to California, Jonathan, who had sickle cell anemia and needed somewhere to stay because he was medically fragile and his mother, mother wasn't capable of handling all the, you know, risks that were associated with sickle cell anemia. So he needed like in home care, my mother being a registered nurse, decided to him in, and he took my old room. So him and my brother became very, very close, very, very quickly. My brother, who also has a disability, he, um, has, was born with spina bifida. He kind of, you know, growing up, we always had a giant family. We five of us, my brother being the second oldest, however, because he was essentially a mobile in a wheelchair as far as friendships go. Most of the friends that he had were friends that he made through us that would come to the house and he'd become friends with them.
Speaker 0 00:03:32 So later in life, when, you know, we all moved on, moved out of the house, went to college, et cetera. My brother was kind of left alone with, you know, all these people not coming over anymore. And he was kinda depressed for a little while, but luckily the state of New Hampshire has a program called living innovations. And it's a state run program where people with disabilities are welcome to come together and it's completely state funded where they have different AIDS that will help them go out into the community, whether that is, you know, finding a job, whether that is going to different, you know, functions or meeting people with similar interests or other people with disabilities and talking about their disabilities. So through that, my brother and John became friends as well as their whole group of friends. And it was really the first, you know, friendships.
Speaker 0 00:04:28 They actually had like the real friends that were just seeing, you know, formed organically. And then, um, Jonathan happened to pass away, unfortunately in later 2013 and I'm announced to me, apparently he was writing a script for a horror film that he wanted to make with his friends. And I didn't know anything about this until three months after he passed, my mother was talking to his mother and he was like, Oh, you know, John was writing this script. And um, some of the boys have approached me about it and I wanted to know what your son had to say about it. So she immediately contacted me and was like, the boys want to make this film, you know, can you help them? And it kind of, the whole thing started from there.
Speaker 1 00:05:12 Interesting that New Hampshire has this program, essentially. It's kind of like a workforce development, but also a life development program. Does it, do I understand that they help to place drawn into a home so that he could be helped with his disability?
Speaker 0 00:05:33 Yeah, it kind of is different for each case depending on the disability and depending on honestly what the client wants, but for the most part, it's people that are over 18 years old who are medically fragile or their parents just, you know, aren't capable of, of giving them the attention they need for their disability. So some people for instance, will just need housing. Um, another boy in the, in the documentary, he would live in other people's homes just so they could get him to work and get him to appointments on time and stuff because his parents have younger kids that they were dealing with and they can't, you know, devote time to bring an adult around to different places. So it kind of all depends on that, but there's also a good incentive as well for the hosts as well. Because basically if you bring a, you know, a child into your home, or I should say a young adult into your home, the state recognizes that. And you know, you, you obviously get some compensation for that and it's also completely tax-free et cetera. So there's kind of an incentive for more people to allow, you know, these people that need homes into their homes.
Speaker 1 00:06:41 That's awesome. I wish every state had that. Um, or maybe there's some version, but probably not to the extent of what it sounds like New Hampshire has. Um, and I kind of want to talk a little bit of before we really dive into the, into the movie is you obviously had a brother Garrett who also was in the video. He was also in the film I should say. And he has fun of it. What was it like being a brother and growing up with that,
Speaker 0 00:07:12 You know, living in a place like New Hampshire, you know, this is the other side of New Hampshire is it's a very old place, a lot of old buildings. And you know, the biggest thing growing up was just how many places are not handicapped accessible. And they kind of escape around the idea like, Oh, we're, we're an old building. So we don't have to be up to code and things like that and things where certain measures could be, could be done just to mitigate like most of my brothers just being uncomfortable in a situation. For instance, he graduated from high school and he graduated from Pinkerton Academy in Derry, New Hampshire. And they have the, this tradition where there's these like, you know, hundred-year-old steps or something like that, where everybody goes to accept their diploma. And they basically told my brother like, Oh, we don't have the time or money to set up a ramp.
Speaker 0 00:08:05 So we're just going to call your name and we're going to go deliver your diploma in the crowd to you rather than having you come up on stage and stuff. You know, luckily some big kids on the football team picked up his wheelchair and brought it onto the stage. So, you know, that was really cool, but like just little things like that. And then even like, as, uh, as, um, recent, as when I went back home, you know, in December we had all gone out to a restaurant pub in New Hampshire and like, you know, the waitress didn't even think about it just sat us at a high top table when my brother, his eyes just, you know, in his wheelchair just barely went over the table. Like how can we sit here? Like, you know, and they of course look at us with no answers. And it's like, well, you know, so it's just as basic, basic things that you wouldn't even think about. Yeah, I
Speaker 1 00:08:56 Totally can relate to that. I use a wheelchair as well. And so disability etiquette in training is something that's so needed in the community. And just little things like that for waitresses and other staff just in the service industry is they lack the training or someone just never taught them how to assist a guest with a disability. And what were some of those other challenges that you face with him growing up? Anything else?
Speaker 0 00:09:29 Yeah, I mean, a lot of, a lot of times too, it was hard to place him in classes and, and people just assume that because he had a physical disability that he had a mental disability as well. So they would put him in classes in high school with developmentally disabled people. And he was, you know, he would just sit there bored all day because they, you know, they were going through certain things that like he learned years ago in elementary school. And then all of also, like travel's always been a problem. He can't really travel long distances on a plane or anything like that. Because as you probably know, there's not really any handicap accessible bathrooms on planes whatsoever. So it's either be uncomfortable and basically have nowhere to use the restroom for hours at a time or, you know, sit and suffer through it, you know, the whole plane ride, things like that. But yeah, I mean, those, those are the biggest things that I can tell you about growing up that I saw, you know, even from just being his brother.
Speaker 1 00:10:27 Yeah. Thank you so much for sharing, because it's always interesting to hear what other siblings say about their sibling, because they also experienced the disability to some degree, right. Because you're with them and you have now this awareness when you're going everywhere, right. I'm sure you probably think about elevators and curve Rams and other high top tables and stuff like that when you're out and about. And so kind of jumping into the film. So John was writing this script. How long did it take for you to figure out or be looped into the discussion that you were going to meet the director of this film?
Speaker 0 00:11:14 Uh, so to begin with, I didn't even know we were going to be doing a documentary. My, my goal was to kind of help them make the short film. So the documentary thing kind came, you know, after the fact when I was like, okay, well, you know, this pro we had the first like kind of phone meeting with the boys. And, um, you know, there was a lot of laughing between all of them. And I was like, this would be a great thing to document, you know? So then not only do we have this film in John's honor, we also have kind of a tribute from his friends and to see kind of the work that went into them, making this film and because a lot of them are, or I should say all of them really had not ever made anything outside. Maybe Nick who made one YouTube video or something in the past, this was kind of their, you know, first take at making any kind of film, even holding a camera or anything. It was kind of a trial by fire, so to speak because they were kind of learning everything on the go. And I mean, you saw the film, I think from the beginning of the film, to the end of the film, you can see the real growth that they had as filmmakers as well. And I think we were able to capture that on camera, which I'm very happy.
Speaker 1 00:12:22 Oh, tremendously. And it was really interesting to see how the film was not only a memoir to John, but also just a learning journey for his friends that were doing this in his honor and his memory to also learn this newfound skill of how to produce a movie. And then at the end you saw the eight minute short film, which was really cool when you first sent it to me, I thought I was going to be watching an entire horror film, but then I slowly realized that it was a tribute to him and his honor. And that was really cool. What was the idea behind that?
Speaker 0 00:13:10 I think, I think because when we were showing, if we were to just just show the film, people wouldn't really know the story behind it or the story behind John, or really get to meet John through the film. So it was one thing just to have it, but that would kind of be like an inside thing for them. Cause they knew that it was for John, but anybody who just, you know, off the street where to watch it on YouTube or whatnot, would not know that it was something to do with John or who Joan was. So we wanted to definitely have a balance between, you know, um, kind of showing, you know, cause so some people see like a short film and like, Oh, well lots of people make short films, but we wanted to show kind of the struggle that they had to make this film and kind of the effort they put in and kind of, you know, what it took for them. You know, it took over a year for them to create the film from start to finish and then also have a kind of tribute to the friendship between John and the boys beforehand, just to show kind of what John meant to them and what friendship means to these boys.
Speaker 1 00:14:13 Yeah. And it totally showed to see the friendship and how they each developed and how much Sean meant to him. I thought that was really awesome. Um, one thing that I saw was incredibly awesome was all of the producers, even the actors had some relationship to disability, whether they had a disability themselves, it was like high functioning, autism, spinal bifida, and so on. And then even some of the actors, you know, had siblings or friends with disabilities or just wanting to do something for a good cause. How would you describe, or how would you see that is different in the film industry?
Speaker 0 00:15:01 Uh, well I think the film industry has a lot of problems when it comes to, you know, representation as far as disabilities go for the most part because, you know, when was the last time you saw someone with an actual disability portray someone with a disability? No, it's always, it's always an, a list actor who's acting and, and, or a script that, um, the script that I, that comes to mind is the one with Amelia Clark me before you, I think it was, and it kind of made like, you know, rather than a woman just falling in love with someone in a wheelchair, it was like, Oh, this is what's wrong with that woman. That's why she fell in love with someone in a wheelchair rather than just like a love story. There had to be kind of a preface to it. And I think that's like really wrong and like gross, honestly.
Speaker 1 00:15:49 Yeah, totally. And the only other representation that I can really think of vividly is Allie stroker and glee. I don't know if you know of her, but she actually does use a wheelchair. And she is a notable actress who plays, act like plays roles with disabilities because she has a disability. So I think it was just really cool to see how, especially the producers who have autism and are on the spectrum, they were able to create such an incredible film, but also the audience was really taken aback in a good way, by how great they produced a film. What was it like or what were some of those other comments that you got from when you went into the premiere? Just either about disabilities or in general?
Speaker 0 00:16:46 The feedback has been pretty, pretty incredible. Um, not only did we have the premier in New Hampshire, we premiered at a snob film festival, which is the, it sounds pretentious, but it's somewhat North of Boston film festival in Concord, New Hampshire. And that was mostly like friends and family for the most part. So, you know, obviously they were going to give their congrats and all that kind of thing, but it wasn't until we kind of went to film festivals where we didn't know anybody and we still got the same reaction where it was really like, Oh wow. We, you know, we made a good film here. You know, we played, you know, whether it was a Las Vegas audience or a Texas audience or an Alabama audience, we were all getting like in Texas grown men and in, and cowboy hats crying by the end of the film. And, uh, yeah, so we, the response was just incredible. Um, we went to a bunch of film festivals, won a, a lot of awards. I think we won like 13 or 14 best documentaries and then a few best infests and that kind of thing.
Speaker 1 00:17:50 Wow. That's incredible. And it's truly one of a kind, because you just, like you said, there's not a lot of representation for disabilities in the film industry, as you're a director. Do you feel like the films that you want to be a part of now have some sort of disability representation going forward? How has this film changed your mindset?
Speaker 0 00:18:18 I mean, yes. Especially, you know, I've done a lot of podcasts now that deal with disability, I've done a, we did the disability, a few disability film festivals, and just hearing kind of the same stories from, from different people that are involved in the film industry that have disabilities. Like there's not enough representation. So I would like to definitely involve more people with disabilities in my films. Um, I think like when I looked at the stats, it was like only 2% of films have, you know, someone with a disability in them. It's like by far the lowest you percentage when you're looking out there at all the major groups and it's like, you know, why there's, there's definitely actors out there that are, you know, talented that have disabilities, but they just seem to always be passed up for the alias actor that can sell the film, do it by name recognition. So not a lot of people are giving them, you know, a shot.
Speaker 1 00:19:14 How do you go about finding actors with disabilities? Do you like put on a casting call? Like must have a disability? Like how does that work?
Speaker 0 00:19:26 I mean, I haven't done that, but I think that when you post certain roles and you put the back character is disabled, I think depending on where you are, you know, what state you are, where you're casting, you will probably get some people with that disability coming into addition or putting their resume forward on a casting website or something like that. So I think people just have to be more open minded and kind of roll roll with that. Like, because you know, the more diverse, yeah. Even like in 2000, 2020 at this point, like even in 2019, we, weren't seeing the level of diversity in all aspects as we are now in 2020, uh, everybody's just kind of opening up to the idea of like, you know, now we're seeing more, more African Americans represented in film. We're seeing more Asian people represented in film. We're seeing movies being made off of like popular franchises where it's not being completely whitewashed with, with like, you know, American actors playing, you know, people in Egypt and things like that. So I think the only next logical way to go is, is for disabilities as well, to me to be included in that.
Speaker 1 00:20:41 I so agree because I think it also just builds an inclusive in world. And when I see movies and I don't see myself represented in them, you kind of just lose interest in wanting to watch movies. Right. And I'm sure a lot of other minority groups face that same way. Did you know John much?
Speaker 0 00:21:10 Uh, I, I had brief encounters with John. I didn't know him very well, but I would say the time that we did spend together was pretty genuine. Um, so I came home for Christmas break in 2012 and he was already living in my, in my room at that point. And I was taking in a long gated Christmas break. So I was home from like December to February. And then from there I was going on a, a movie shoot in, in Florida. So I was kind of just taking a long break with the family. And, um, you know, I kind of knew what John was all about. You know, he was kind of like a jokester prankster and, and really, really funny. He was always joking. I can tell you a story where the first morning I woke up, I was sleeping in my brother's room.
Speaker 0 00:21:53 He had an extra bed in there and I woke up to John throwing a, what I thought was his live scorpion on me, but it had just passed. It had passed away the night before apparently. So I thought he was throwing a live scorpion on me while I was sleeping, but it had passed away and he's just sitting there laughing and he thought it was hysterical. But in those two, in that two month time, um, you know, the next morning was completely different. The next morning I was woken up to my mom saying, help me, help me. You have to turn John over. He's having a seizure. So I had to run out, you know, I'm out there in my boxer shorts, just like trying to, you know, flip John over, you know, so it could happen at any point in time. And then, um, you know, the cool thing about that two months was he was really, really into what I was doing filmmaking wise.
Speaker 0 00:22:44 Cause I was gearing up to do this movie. I was just coming off of another movie and I was having calls pretty much every other day or so, you know, with different producers and things like that. And he was always, how does this work? How does that work? He even helped me shoot some B roll for my previous film. And he just came on set was like a camera operator for a little bit and stuff. So I didn't know until after he passed that, you know, I made such a big impact on him. Cause I didn't know he was writing the script. I didn't know that he was making a horror film. So that was all huge surprise to me. And you know, it's, it's incredible. I guess like you don't even know that the impact you have on people.
Speaker 1 00:23:22 Yeah. Well, that's so nice that you got to be able to do this for him as well. Cause he seemed to have such a great, he kind of probably looked at you like a big brother almost.
Speaker 0 00:23:34 Yeah. And he definitely looked at my brother as a brother. So, um, just seeing that and being able to, you know, to this day, my brother and his friends still talk about it. They still have this huge boost from, from making the film and kind of, no, they think they're like the top dogs they're producers now. So I think it really changed how they think of themselves as well.
Speaker 1 00:23:56 I love that. No, keep expanding on that because I think especially people with disabilities and high functioning autism, that's a lot of praise there.
Speaker 0 00:24:08 Yeah. I think, um, so yeah, after the film, Nick went on to get an internship at a local news station and then he also is going to college for communications and filmmaking. And he's been trying to cast a new short film, the other boys that are talking about making Rose store too.
Speaker 1 00:24:30 Oh, great
Speaker 0 00:24:32 To fruition yet because, uh, you don't have to give a spoiler away. But the, the wounds that my brother dealt with in the documentary, he's still kind of dealing with to this day because he's in a wheelchair and because the wound is underneath him on his lower thigh, it just keeps opening back up. So just recently two weeks ago he got plastic surgery on the wound and now is hoping that it's finally closed for sure. And then he won't get any more infections or anything like that. So knock on wood.
Speaker 1 00:25:02 Yeah. Because I remember how serious it was presented and in the film where it had multiple surgeries and was hospitalized for, I think it was six months, very long time. So what were, or what was it like working with people with autism?
Speaker 0 00:25:26 Uh, well I think for me it was a little bit easier just because I've kind of been around people with disabilities my entire life, you know, kind of, you know, some of my brother's friends growing up, unfortunately some of them have passed away because they had different disabilities that kind of shorten their life span. But, um, I had been around a lot of classes and stuff that Garrett was in and gone to his Easter seals, programs and stuff. So I think I, I kind of always, you know, because of that, I've been very, very patient and we kind of had like kind of a rule going into the film that we weren't going to help them unless they ask for help, but this was kind of their project. And in case they kind of needed help, then we wouldn't, we wouldn't step in or anything like that. So everything that you see in the film is a hundred percent what their vision was.
Speaker 1 00:26:20 That's awesome. And I think because you have that experience of having a brother with a disability, you are more empathetic of others who are different. So that's really nice to have, did you ever see much of John's other than the seizure, other issues that he had with sickle cell? Cause I know showed him and out of the hospital and some other complications. Do you know much of the other things that happen with sickle cell specifically?
Speaker 0 00:26:52 Yes. There was a lot of times where he would get like a simple cold and because of the sickle cell, it would go into like something that was life threatening when that be like very, very high temperatures, high fevers times where he would fall and break bones because he had all his bones were more brittle, lots of things like that. But the thing with John that I think is a very admirable as well is like he, he never complained or he never, he never made it about him. He was always trying to raise money for sickle cell, but it was never for himself. It was for other people dealing with sickle cell. And in that short two month period, I was actually able to film a video of him kind of doing a crowdfunding campaign for sickle cell anemia. And unfortunately that's like the last video of John is that video of him trying to, so even like, you know, until his death, he was trying to raise money to help people live better lives.
Speaker 1 00:27:50 Wow. That's awesome. And so how can we help John and give back to him?
Speaker 0 00:27:58 I would say for most people look to your local, um, whether it be sickle cell anemia or any disability, um, awareness groups in your state or town or wherever you are across the world and kind of just donate whether that be time or if you can afford money, donate to those because those programs really mean the world to some people and you know, every little cent or one hour of your time matters. And the only thing I can look back on is like just a few conversations with John made him want to be a filmmaker. So like, you know, just your time can, can, can change people's lives.
Speaker 1 00:28:37 Additionally, you can watch the movie and tell us where we can find the movie.
Speaker 0 00:28:46 Sure. The biggest place right now it's on Amazon prime. So if you have an Amazon prime account, you can watch it for free and is on Vimeo on demand. I believe it's like two 99. It'll surely be on to be in a bunch of other platforms. But if you just search our friend, John on Amazon, it'll come right up. J O N not J O H N
Speaker 1 00:29:06 J O N our friend J O N. Yes. Well, thank you so much, Edward, for sharing everything about the film and just talking about disability representation and your experience with disabilities and beyond. So I really appreciate it. Thank you so much for having me. All right. Hope you have a great one.
Speaker 0 00:29:30 Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.