TRANSCRIPT
Vicky: "You will fracture at the slightest touch or hug."
Leonard: It depends on the person. My body breaks easier than others. You feel all the eyes watching you. I know they don't only watch my acting, they watch my body that looks so different than others.
Vicky: Non-disabled actors play disabled roles. Don't they get a huge backlash?
Leonard: That's my question: Where's the backlash?
Vicky: Hey everyone, I am Vicky and this is Freaks No More! For those of you who have already listened to the show, you know the drill. We tackle myths about visible and invisible disabilities, and we show you how you can be a bit more kind and compassionate to people who just experience the world differently.
Today in the studio, I'm joined by someone who is many things. He's an actor, he's a director, and he's a screenwriter. He has also been a host of a show, kind of like me, on a YouTube show called "100% Me". He also lives in a condition called osteogenesis imperfecta or brittle bones. And we're going to talk more about that.
But for now, I'm happy to introduce Leonard Grobien here in our studio. Hi, Leonard, super nice for you to be here!
Leonard: Hey, thanks!
Vicky: When we talked on the phone the first time, you said like, oh, almost no one has heard of what osteogenesis imperfecta is really. So how do you describe it? What is it?
Leonard: It's a genetic disease that makes it impossible for your bones to grow in density and to grow strength, really. Also to grow in in length. So that's why I'm shorter and my bones break easier.
Vicky: What was it like growing up when you were a kid?
Leonard: It's always more fragile. I watch my step in my wheelchair very carefully and I always scan my environment for possible danger to my to my body, actually. And I, yeah, try to avoid risk at any point and be aware. For example, crowded areas could be dangerous topic for me more than for others.
Vicky: I guess I'm going to want to ask you more about how you experience living with osteogenisis imperfecta, but you're also a filmmaker. Do you feel this kind of pressure maybe that you have to represent people with disabilities in a way, either in your films or as an actor?
Leonard: Yeah, especially for me, working from both sides of the camera at the same time, I feel the mission. But at the same time I feel the need coming from me, coming from the inside of me, because I really want to represent the true image, authentic image of our population.
Vicky: Do you think there's enough of it now? In German media, let's say?
Leonard: Definitely not. No, there's still a way to go.
Vicky: So what exactly has changed? Like, I mean, you've probably seen it evolve, you know, over the years as you've gone through your filmmaking career. Has it changed in a good direction?
Leonard: Yeah, definitely. Yeah. I think you can be optimistic about it. I know some people have different opinions on that, but I think most people now have heard about the movement or heard about a change or heard about the need. We want to represent everybody here.
Vicky: And so when you started, you know, as a filmmaker, when you started doing movies and when you started getting interested in cinema, did you encounter... not so nice people? Like people who are not inclusive, not accepting, who didn't really see that need to represent people with disabilities well?
Leonard: I think I never stood in front of them, but I heard from decisions having an impact on me. Yeah, it's always painful to see that somebody's deciding, OK, we can go inclusive or exclusive and: let's go exclusive. And that's still something in my brain that...why? All the time I'm not getting asked to play a part or anybody with a visible disability.
Vicky: So, in the beginning you don't even get asked like it's just...
Leonard: It starts there.
Vicky: ...exclusion from the very beginning.
Leonard: It starts there. So it's a devastating silence, obviously for every actor, that has another meaning to it. So there's that silence. But when there's a discussion about a role, for example, I experienced an issue with insurance as well.
Vicky: In what way? What...?
Leonard: My body breaks easier than others and the insurance didn't want to cover my work in one movie at all.
Vicky: How do you deal with that? Like what do you say to them? Like, hey, sorry, but I need to be insured. Like, come on.
Leonard: The problem was there weren't willing to have any kind of insurance. They didn't want to talk about it at all. They just declined.
Vicky: I guess you also meet some assumptions of people? Like they assume that you can't do things or they assume that you can do certain things but not so well. What are the worst assumptions that you've encountered over the years?
Leonard: That I'm not a good actor because I have a disability. There was a theatre head that wrote in an email that wasn't sent to me, wasn't meant to be read by me, that it's nice to watch him, blah blah blah, but he's not an actor.
Vicky: Oh, God.
Leonard: And I don't know what else I was in her opinion, but I participated in that play and that might be the...the worst.
Vicky: And I mean, we talk about worst assumptions, but have there been cases where you've, I mean, probably like a lot of people compliment you on your acting on like your films and so on? Like what are the let's say I don't know, good assumptions?
Leonard: Because of my disability, people see me in the wheelchair and they assume that I'm smarter than others, and that's plain stigma. I don't know. That's just, yeah...
Vicky: I was talking the other day to an audience about representations of autistic people in the media and this one film, Rain Man, where like Rain Man is like a genius and I can count cards in poker and can calculate numbers really fast, which is, of course, a ridiculous assumption that all people are like this, autistic people are like this. So I guess it's kind of similar.
Leonard: Yeah.
Vicky: People... Yeah... It's an image that has been ingrained into our heads from movies, TV shows and so on.
Leonard: Yeah, and it's so dangerous when that's being Rain Man, the only form of representation for autism.
Vicky: Yeah, and it's valid for, yeah, all sorts of disabilities, not just like autistic people, but...
Vicky: ...but yeah, how they represent them on screen and how that affects...
Leonard: Yeah.
Vicky: ...people's perception over the years. Talking about assumptions, though, behind me we have a spinning wheel. And for people that listen to us and and watch us, they will know about it. So, every colour corresponds to something. In this case, usually we do only myths, but in this case there will be both myths and some truths about osteogenesis imperfecta. So whenever you're ready, spin it and we see where we land!
Leonard: OK, let's go! Let's do this.
Vicky: OK, this is something that me and you talked about when we first met: "You will fracture at the slightest touch or hug."
Leonard: It depends on the person, but me personally, no
Vicky: Do people, do you often like think that people like, Oh my God, because they hear the name glass bones or brittle bones, they think like, Oh no, you got to be more careful.
Leonard: Yeah, and especially in German, it is literally "glass bones". People are more careful to hug me or to shake my hand or they assume...
Vicky: Yeah.
Leonard: ...things in my life. And sometimes I hear that through questions or something.
Vicky: Let's spin it again and see where we land! OK, this time light blue: "It's a childhood disorder and people grow out of it", so only kids can have it.
Leonard: No, not only kids can have it. It's a genetic disease, so it stays with you, but it really changes when you grow up. My bones gained a lot of stability after the age of 18 probably.
Vicky: So when you were a kid, I don't know, it's interesting to me, were your parents ever overprotective or careful? Or if you had any siblings...I don't know if you have any siblings.
Leonard: Yeah, I do.
Vicky: If they if they're also quite, you know, careful and when you were growing up.
Leonard: My siblings and me, we really learnt that together by trying. And with brittle bones it can be painful sometimes. But my parents, yeah, were always careful and very caring. Yeah, most of the time, not overprotective. Sometimes when I started to go out at night with 16, 15...
Vicky: Like every parent I guess would be worried, but especially, I guess...
Leonard: Exactly, it was a different discussion then and I had the feeling I sometimes have to fight more than others and I couldn't understand the arguments because by then I knew my limits pretty well and I knew my skills with arranging with the environment and getting from A to B.
Vicky: Let's go back to your filmmaking because I really want to talk about you as an artist. So when we spoke before, you said, OK, being a filmmaker is part of my identity and having brittle bones is also part of my identity. How do you combine these two? Do they ever... are these two sides ever in conflict with each other or are they complementing each other?
Leonard: The good thing is that most of the time there's no big conflict between them and it's always part of my identity, both. So it will be a part of my stories. Not with the name of brittle bones, or with a wheelchair, or with a visible disability all the time through all the stories or characters. But obviously my perspective is different.
Vicky: I mean, as a writer, I guess you're very attached to anything that you produce, but do you have any particular favorite characters that you've written?
Leonard: By now, that really can change quickly in a few weeks, but by now I think the main character of my first fantasy script.
Vicky: What is your fantasy script about, if you can reveal a little bit of it?
Leonard: I can. I mean, for me it's not a secret. I love to share it. It's not published yet. It's not even funded or shot yet. By now it's just a story written on pages. It's called "Elualara" and it's a mixture of her name, Elua, being the ultimate antihero for an epic saga, maybe a trilogy even...
Vicky: Cool! You're going to be directing a trilogy!
Leonard: If I'm allowed to, yeah, I would ask for that if that's possible. Yeah, that would be amazing. Unbelievable.
Vicky: I guess as a filmmaker, you always gotta, you know, make sure that you have enough support and enough funding to do a project. Let's say if money was not a problem, if it was not an issue. If you didn't have to, like, apply for all these places to get funding and support. What would be like the biggest dream project?
Leonard: I think it would be that trilogy, some Lord of the Rings-like franchise even. So that would build an entire world around that, not only movies, maybe video games and maybe comic books.
Vicky: I'm really looking forward to seeing the trilogy if like you know, hopefully, fingers crossed, it will happen... manifesting it. Talking about cinema, there is always this debate that I hear, probably our audience has heard of, that non-disabled actors play disabled roles.
Leonard: I witnessed that I'm emotional about that topic because when I see it, it feels super wrong. And just recently, two weeks ago, I visited an award, and there the actress who won the actors award, yeah, played someone in a wheelchair, and the role had the disability for the whole time of the movie.
Vicky: Oh...
Leonard: So the role didn't gain the disability through the story at some point.
Vicky: So when something like this happens, the director of the movie, the cast and so on, don't they get a huge backlash for basically casting someone that's non-disabled for a disabled role?
Leonard: That's my question: where's the backlash? Yeah...
Vicky: So there wasn't any for that particular...
Leonard: No. The movie won another award in that night. And that was kind of devastating to see... without being connected to any of the crew members, or the artists involved, but it just feels super wrong.
Vicky: In my work, I often talk to other journalists about how the media can do better in portraying people with disabilities. And oftentimes in news articles that talk about disability and so on, people don't even try to involve disabled voices.
I try to educate other journalists and say like, hey, I know that we're journalists and we're busy and sometimes you have... what, like, two hours to write an article and publish it. I know it's like hard to contact people and to ask for quotes, but always try to at least involve people with disabilities, if you're writing a story about a disability. Of course!
Leonard: Yeah. And that production also had the opportunity to ask a person with disability for advice like outside eye, something like that, on the script, on the production process and so on. And they did not do that as a fixed part of the crew. And that also could avoid such mistakes.
Vicky: You started acting, I think pretty young. Has that relationship with you being very present either on stage or as an actor in film... How has that relationship with you and your body evolved over the years?
Leonard: I started being in front of the camera on purpose when I was 13 years old, something like that, 14 years old maybe, for my own YouTube channel. Just talking in front of the camera or doing small bits, scenes, comedy stuff. Cringe, definitely.
Vicky: [Laughs] As always like a teenager trying to do YouTube...
Leonard: Yeah. I mean I can also have some kind of love for that, but I think the process started there. Acting, especially on stage, changed a lot.
Vicky: In what way?
Leonard: You feel all the eyes watching you and then I know they don't only watch my acting or listen to my voice, but they watch my body that looks so different than others. And probably very different to their own bodies.
Vicky: So where do you feel most vulnerable in a way like most exposed? Like in front of a camera or on stage?
Leonard: A true author would say writing at my laptop.
Vicky: Writing? Oh!
Leonard: But...because the truth finds the page there and that's all true me. But I don't want to be so pathetic right now.
Vicky: [Laughs]
Leonard: On stage would be the answer.
Vicky: On stage.
Leonard: Yeah, just on stage and if there are not a lot of other people involved. My first play was with just another person on stage. So yeah, I felt a really big constant focus on me. And through that, I learned to have a different relationship to my body.
Vicky: And you've won an award, I think, on the Cannes Short Indie Film Festival, no?
Leonard: Yeah. Yeah, exactly. I think that was my first award ever there.
Vicky: How did it feel? Just like I'm thinking like how I don't know if I was there, like I would be shitting myself [laughs] thinking like I don't, I don't know what to expect. I don't know if people would like it and like being screened on a huge film festival with a big audience.
Leonard: Yeah, same. I would have been. I wasn't there.
Vicky: Oh!
Leonard: Because the team wasn't invited.
Vicky: At all? Like you...
Leonard: Yeah, I still don't really understand those festivals. Those kind of festivals, especially. Because the movie won something and, yeah, I think our director was there, but nobody else.
Vicky: That's a shame. Like it would have been super nice to like see your own work on screen.
Leonard: Yeah, totally. I mean, I was allowed to witness that in Saarbrücken at the Max Ophüls Festival and in Hamburg and in Rochester, New York as well. So that that was epic to be invited there to take that long journey and that was really, really exciting.
Vicky: We have a time machine in the studio! Again, for the people that know us, know what it is. We go back in time and we explore a little bit about the history of disability and how language around disability has evolved and changed. OK, whenever you're ready, you press it. 3-2-1...
Vicky: Our first stop is ancient Egypt. In the beginning of the 20th century, archaeologist John Garstang uncovered a 3000-year-old mummy in a small sarcophagus in Beni Hassan, Egypt. He hadn't seen human bones like these before and thought it was the mummy of a monkey.
Decades later, X-rays revealed the truth. It was a small child with brittle bone disease.
We jump to the 9th century CE with a Viking twist. A legendary Norse leader, Ivar the Boneless, could not walk, but ruled armies. Modern reconstruction suggests that his bones were unusually flexible and that he might have had brittle bones.
And now we transport to the Arabian Peninsula with writings dating back to the 18th century. An Arab named Satib was described as having bones only in his head, neck and hands. The rest of his body could be "folded like a cloth". Texts read "He was carried where he liked, on a net made of palm tree branches".
And although some of these writings could not be confirmed, his story shows that brittle bone disease was recognized in various cultures.
In the 19th century, Dutch anatomist Willem Vrolik noticed that a baby's bones were imperfectly formed - and gave the condition the name osteogenesis imperfecta. Finally, people realize that it's not a curse, it's just biology.
Today, advances in genetics and medicine allow for precise diagnosis. And these ancient cases remind us that osteogenesis imperfecta may be rare, but its story is as old as civilization itself.
Vicky: So we're back now, back in the real world! After that, like little trip back in time, I want to ask you what kind of things still need changing in your world: in theater, in acting and in cinema.
Leonard: Sometimes I see the the fear of the unknown and I don't know how to change that. But I think when we are used to seeing people with all kind of different conditions and disabilities in media, in our day-to-day life, in our jobs, as our colleagues, friends and idols, then I think we have arrived. And then those prejudices and this big fear of coming closer is gone.
Vicky: And it shouldn't be just about, let's say, casting disabled actors for disabled roles, but also casting disabled actors for any sorts of roles.
Leonard: Exactly.
Vicky: Like not just to think about disability as like this separate thing that is just, you know, we have disabled actors portraying this particular disability in a film, in cinema, but actually casting them as just actors.
Leonard: Yeah. That's a really, really important part, yeah.
Vicky: It was a brilliant conversation. Thank you so much, Leonard.
Leonard: Thank you.
Vicky: It was great. Thanks.
Leonard: Thank you.
Vicky: I learned a lot from Leonard today and I hope you did too. If you're just listening to us but not watching us, check out our YouTube version. It's really cool. There's many colours, you're going to like it.
And if you have any questions or comments or questions towards Leonard even, we have an email inbox: freaks@dw.com. Write to us! Bye for me. And as always: be patient, be kind and be understanding!