TRANSCRIPT
Filip: And he told me that he can cut my small fingers from feet and put it on my left hand to have this kind of, er...
Vicky: Like something to hold things? Like a claw?
Filip: Something to hold, yeah.
Filip: And I was like,
Vicky: [laughs]
Filip: “Man, I don't have one hand, and you want to just destroy my feet?”
Vicky: Hey everyone, I'm Vicky and this is our podcast Freaks No More!.
We tackle myths about visible and invisible disabilities and neurodivergent brains, and we show you how you can be a good ally to people who just experience the world differently.
So how did it all start really? Freaks No More! has been our dream project for a while now. We just felt that there isn't enough visibility in the media for people with disabilities and a real space where people can come to share their personal stories with authenticity and without shame.
Our first guest here is Filip Pawlak.
Filip: Hello, Vicky.
Vicky: Hi, very nice to have you here in our studio and in our first very episode of the show.
Filip: I'm super happy to be your guest, and to be the first guest, oh God!
Vicky: So Filip, you're from Poland and you're a performance artist, and you're also an activist for people with disabilities.
Filip: Yeah, for, I would say more for artists with disabilities.
Vicky: You stand kind of inbetween two worlds. On the one hand, you talk a lot about disability and your work related to disability, but also on the other hand, queerness. So what it is like to be queer. And you call yourself a “gay crip”. Some people might find that offensive. So I was wondering what's your relationship between these two words, “disability” and “crip”?
Filip: I'm trying to live with my identities, like, close to them, as a queer person, as a gay person, as a Polish person, but also as a disabled person. And I was looking for something that is connected with the pride that I know from the queer movement.
Vicky: It's kind of like the title of the show Freaks No More!, we try to reclaim that word 'freak' that might seem a bit, like, offensive to people, and a bit not in the right place, but we try to use it in a positive way to describe a group of people.
Filip: Yeah, you know, I'm not sure it is a positive. I think it's provocative.
Vicky: It’s a little bit provocative. Yeah, exactly.
Filip: Yeah, and that for me, it's fine, it's good, I'm trying to work with the people's emotions and with their, er, reactions to a lot of things. So, like, having any option to, to push them a bit, to put a question mark like “Oh, why are you calling yourself ‘crip’?”
Vicky: For the people who are just listening, er, can you describe your disability?
Filip: The length of my arm is my disability. It's from my birth, so, all my life. I'm a ginger, but that's, I hope, not a disability, still. I'm HIV-positive, which I know in a few countries is also considered a disability. Ah, so that's the new identity I just, I just got.
Vicky: Okay. Thank you for revealing it to us!
Filip: New, new.
Vicky: What was it like for you growing up in Poland, er, in terms of perceptions on disability? Do people understand it? Ah, have you encountered, like, people being rude?
Filip: I would say that my childhood was great. But when I dig a bit more into that, it's, of course, more complicated. It was a childhood without a disability at all, so it was hidden. It was of course always on display because I never used a prosthesis, or I was not hiding it, uh, but I was also never talking about it. It was never named.
Vicky: So no one really mention- like no one really approached you...
Filip: Yes, that was there, but...
Vicky: It's kind of a bit, like, a touchy subject maybe for some people that don't wanna approach you, don't wanna ask you...
Filip: Yeah, exactly. So it was, er, I think the main goal for my parents was to raise me as the normal kid. And I'm not saying that it was wrong. I think that was the best that they could do in the moment.
It was, of course, covered, and really covered in shame, that I can discover now. And I can rethink my childhood memories of why I was, for example, not doing certain things and why I was doing something.
Like when I was a bit older, a teenager, why I was making fun out of me, how I was hiding this feeling of shame or this, like, this small thing, that something is not right. I'm a bit different. I have friends, I'm popular, uh...
Vicky: But there's something that we don't talk about that is there, and I feel like a little bit uncomfortable that maybe…
Filip: I think that that's the one thing, but maybe it's also normal when you are a kid that you have, like, all of us probably have something that you are not sure if it's good or not, as a kid. That's how our identities are growing and how we are growing. But I think something that was different, was this fear of possibility of being excluded.
So, like, this constant fear that if I do something wrong and I have no guidance on how to do it, that this constant fear that there is something I could do wrong and then it's all gonna be closed, over. It's going to collapse.
Vicky: All the opportunities...
Filip: All the opportunities. So that's the reason I was a bit too ambitious, you know, I was doing a bit too much.
Vicky: How has it changed from back then when you were a kid, probably, like, there was a bit of shame, there was a bit of this sense of uncomfortableness around, erm, talking about disability or acknowledging it.
And now you're very open, you're very vocal about it, it's part of your identity. So how did that transition happen?
Filip: I think it's really connected with art. I'm just working as an artist and just staying close to this world of ideas, of dreams, of feelings, was really a way to discover myself again. The first artists with disabilities I met, they showed me that you can be proud of it.
Vicky: And it's okay. And-
Filip: That’s okay. That's even better than okay, that you can use it. And this is unique. This is something extraordinary.
Vicky: Would you say you're proud of your disability?
Filip: I would say that I'm, ah, conscious about how unique this disability is, or, like, how special it could be. And I'm not thinking about particularly my body, but what point of view this experience of being disabled is giving me to comment on the world as an artist.
Vicky: We talk a lot about how you perceive yourself and your identity, pride or shame or, like, the evolution of your identities. But, you know, in this show we have something special as you can see on the camera.
Maybe people are curious, like, what do we have behind us? For the people that are listening, we have this colorful spinning wheel that has a lot of colors on it, and each segment of the spinning wheel corresponds to a statement that we found on the internet, online, um, about people with disabilities.
Some of these things are true. Some of these things are definitely not true. Some of these things are myths. So we're just gonna spin it and talk about it.
Vicky: Go for it!
Filip: Ah!
Vicky: Oh! Yellow!
Filip: It’s yellow.
Vicky: What does it say?
Filip: Very few people in the world have a disability.
Vicky: Do you think that's true?
Filip: Of course.
Vicky: Yeah? [laughs]
Filip: It's only ten of us, everywhere. And we just want to rule the world. No, of course I'm joking. It’s er, yeah, that's pretty common. And that's exactly the feeling I had when I was a kid.
And a lot of people who I now meet who are crip, or with disabilities, or deaf people, that they are the only person in their neighborhood who is disabled, that there are only few of them and that we don't know where we are, where they are, where is the community? There is no community.
And this feeling of being alone in the world I think is really common.
Vicky: On the one hand, you have your perception of it. You know, you felt that there are very few people like you and probably there wasn't a community. But, actually, statistically over 1 billion people in the world, that's 15% of the world's population, live with some form of disability.
It's actually one of the largest minority groups. And when you say it like this, statistically, it makes all the difference because you see there are so many people, but maybe it's stigmatized. Maybe in some countries it's not talked about. Maybe there's a lack of community in some places. Maybe from an individual experience, it really doesn't look like that many people. Um-
Filip: I think like all of this, sadly still in a lot of places, it's about excluding the people with disabilities from the normal social life, for example, the casual school…
Vicky: School system, yeah.
Filip: The school system, the offices, the hospitals, so on. But I think that was also a decision of my parents. They decided against the advices from the doctors. Because, of course, when I was born, that was 90s in Poland, they told them, “Oh, you have to put Filip in the facility because he will be blind and deaf and, like, will not function.” And they said “No [laughs]. Why?-
Vicky: Why would we?
Filip: “He only doesn't have hand.” And these first twenty years of my life, they were refusing to connect me anyhow to this community. Because this community is existing there.
Vicky: Yeah.
Filip: But, uh, so that's something I lost. That maybe the people who are in the second parallel system, the disabled system, they are not conscious that they could create the identity.
Vicky: And their own communities, as well.
Filip: Exactly. That it is not only a community about health. Mostly they are taught only about their medical conditions.
Vicky: Yeah.
Filip: And that's the reason that there is this feeling of being alone.
Vicky: It's the same, same where I'm from in Bulgaria. Like, not so long ago, like, a lot of people would put their children in institutions if a child is born at least with a visible disability.
Unfortunately people think, like, “Oh no, I don't know what kind of opportunities my child can get.” And so they make these decisions that, ah, possibly wouldn't affect the child in a very good way when they grow up.
Filip: From the statistics we know that the problems with access to art is, everywhere, the same.
Vicky: So people are not given enough opportunities.
Filip: Not given enough opportunities, exactly. Because of course, like, they maybe have more opportunities to be independent, but not enough to do something that stupid as art. Because who would tell the disabled kid that he or she...
Vicky: You can be an actor, you can be a painter.
Filip: You can be an actor, exactly.
Vicky: You can be a star. You could be in movies-
Filip: Exactly, so that, that's something that in Europe is everywhere the same. As the disabled or a deaf artist, usually you cannot go to a regular acting school or dance school. Er, you have this inclusive theater or something like that, the programs that are around the social issues, but not to the normal art universities.
Vicky: And we can talk more about that, but, ah, let's spin the wheel again.
Vicky: Red!
Filip: “You can always see when someone has a disability.”
Vicky: But a lot of people actually, erm, have a disability that you'll never guess. I myself have ADHD and some people consider ADHD, or Attention Deficit Hyperactivity Disorder, as a disability. And you can't see it. You don't know, like, if I have ADHD. Like, someone has to ask me “Are you diagnosed?” for example, to know.
Filip: About disability, I usually believe in the self, er, identity. If you are self-identifying yourself as a “disabled” or “crip” or how you prefer, that's enough for me.
Vicky: Mhm.
Filip: I don't need a list of medical conditions you have. I think that's the reason you should be more, er, sensitive or, like, conscious about that a lot of disabilities are not visible. It’s-
Vicky: But also not be ashamed of it and not,
Filip: Yeah, yeah.
Vicky: Like, be you know, “I don't know how talk about this person, how do I approach this subject? Like, be sensitive, but, you know kind of keep it quiet.” We also shouldn't be ashamed to talk to people, really.
Filip: I, yeah, with this it's problematic, because there are two worlds that we are living on the same time. The world of promise, of dreams, where we shouldn't be ashamed of something.
Vicky: And the real world.
Filip: And the real world. Because we are excluded. The, the shame is there. We have a lot of really hard feelings to process.
Vicky: Do you think we're moving in a good direction, let's say, as a society?
Filip: There is much, much more media coverage than there was when I was a kid. We are talking about it. I, we, are here. You know, this is a change that we can track and we can say, okay, it's here.
The problematic part of it for me, is, ah, that all this discussion and all this process can lead us to the point where we see that everyone is disabled, or no one is disabled. That disability is like a normal thing. It's paradox, like, we want to be treated as every person in the world, but on the other hand, we want to stay with our unique experience...
Vicky: And identity and community.
Filip: And identity, and a community.
Vicky: And on that note, I want you to spin the wheel again.
Filip: OK. I will try to do it. Lower-
Vicky: Yeah! That's the first one!
Filip: “People with a missing arm can't use a phone.”
Vicky: [Laughs]
Filip: Yeah, tell my Instagram followers about it. I can even, at the same time, use phone, drive a car and smoke a cigarette.
Vicky: [Laughs] At the same time, all three at once.
Filip: At the same time. I shouldn't [laughs] but, um, I can. Now with the technology, like, not having an arm or a leg or any part of your body, it doesn't change a lot.
Vicky: Yeah. And talking about technology, actually, I was really wondering, have you tried to use a prosthetic arm?
Filip: I never had my own prosthesis. I have only one that, er, the Polish health system gave me, that was super ugly and looked like, you know, the leg of the pig because it was like with this heavy plastic with the hairs painted with the black paint. And-
Vicky: And I guess as a kid you wouldn't want to wear that, you know?
Filip: Of course I'd give it to the dog as a toy. So that was the only experience I had. Okay one more. When I went to the doctor to check if they, if I can have the transplant from a dead person. And he told me that no, but he can cut my small fingers from feet and put it on my left hand to have this kind of, er...
Vicky: Like something to hold things? Like a claw?
Filip: Something to hold, yeah.
Filip: And I was like,
Vicky: [Laughs]
Filip: “Man, I don't have one hand and you want to just destroy my feet?” Like, how would I look like at the swimming pool! Like, it’s, it’s, I was so surprised. I was 12 years old, and I was really like, “Ah no!” But to be honest that was one of the first moment when I thought about myself as a disabled person. I come back with parents after this visit, and that was the first moment when I have cried that I want to be normal kid.
Vicky: Oh, wow.
Filip: Then I felt that okay, something is different with my body.
Vicky: We talked about you and your identity and, kind of, a little bit about you being an artist, but I want you to tell me more. Tell me, how did performance art find you? Did you find it? What’s that story?
Filip: I think as a kid, I was just looking for a place where I can feel comfortable and safe. Where I can feel accepted. And I think also now art and theater has this promise of being inclusive, accepting, diverse. Probably because of no other options, I went to, the, some art classes as a kid and then to the theater and I just started doing it.
After trying to be a professional for the first time, so going to the art school after the high school, it turns out that the art world is not that welcoming, that it's not that nice. I got declined to the theater school because of my disability. And it took me a moment to just trust, again, the art world, that I will try again.
Vicky: So it was because of your disability? That must’ve felt, like, pretty-.
Filip: I didn't know what to do that time, you know?
Vicky: Rough.
Filip: It was rough but I probably, I just hide it. I won some competition for the actors, as the high school student. And I won it. And they told me at the end after they gave me a prize, “Yeah, you speak nice, but you will never be an actor.” That was hard. The last project we did, it's called 'Freak Show'.
Vicky: That's what I wanted to ask you about, your project 'Freak Show'. We're going to talk a bit more about it later. I want to keep it as a little bit of a surprise. I mean, as you might have noticed, our show is named Freaks No More!. And to learn more about the history of freak shows, we have with us a time machine. Ah, [laughs] literally, it's a button.
Uh, it's a button that when we press together, it's going to take us back in time and we're going to learn more about what freak shows were in the past.
Together/Both: Three, two, one.
Vicky: In the 19th and 20th centuries, freak shows were a popular form of public entertainment. People with missing limbs or unusual bodies were exhibited as freaks or curiosities.
The 19th century saw freak shows boom with P.T. Barnum's traveling circus called 'The Greatest Show on Earth'. Participants were people like Annie Jones, the bearded lady; Charles Tripp, the armless wonder; James Morris, the man with elastic skin; and many more.
In January 1899, the performers staged a protest demanding that the word "freak" should not be used to describe them. In 1932, the classic film "Freaks" came out. It had a cast including real performers like Johnny Eck, "the half boy", who was born without lower legs; Prince Randian, the living torso, who had no arms or legs and performed everyday tasks with his mouth.
Of course, as the disability rights movement gained traction after the Second World War, freak shows were increasingly seen as dehumanizing and unethical. These shows treated disability as spectacle and not as an identity.
Vicky: So we're back in the real world [laughs].
Filip: That was also the real world!
Vicky: The real world back, back in time. But I promised that we will talk about 'Freak Show', your show.
Filip: The main idea, uh, behind the 'Freak Show' was to create a group of artists with disabilities. Me and my friends, er, artists with disabilities and deaf artists, uh, usually used to work alone. And then we thought that we want to do something together just to try out, just to build together this movement.
Vicky: And was that with artists from Poland?
Filip: Yes, that group of artists from Poland. Nadia Markiewicz, Daniel Kotowski, Babcia, Agata Wąsik and a co-director who is not disabled, Łukasz Ronduda. Ah, and I am the director as well. We were looking for the symbols in the past, or, like, any history that could connect us. And then we found the freak show.
Vicky: Freak shows, yeah.
Filip: Which for us was, of course, the symbol of oppression and of objectifying the disability. But on the same time, that was also a community. That's the reason we chose it, and we decided to create our own freak show again. But this time we are owning it, we are ruling, we are directing it, we know it because we want it.
Vicky: And also reclaiming in a way, the word "freak", because it's kind of like "queer", you know, like the word "queer" was used like as a, as a derogatory term. Now it's, like, it’s reclaimed, and queer people are using it with pride. You know, I'm queer and I call myself queer. Freak, the word freak, still has these connotations in a lot of people's minds.
Vicky: But you're trying to-
Filip: We, we-
Vicky: Reclaim it in a way.
Filip: We are trying to play around it,
Vicky: Yeah
Filip: Reclaim it as well, but also reclaim the space in the art.
Vicky: What do you think else needs to change in the art world to be more inclusive for disabled artists?
Filip: Hmm. The presence of people with disabilities, on stage and in art, is new, and we don't know how to work with it. Me neither. I have no idea. I'm trying and making a lot of mistakes. I know that sometimes it's boring, that sometimes it's hard to communicate what I want to say. It's not the traditional art, and for me, it's the resource. I think it's great, but it’s hard. The audience, er usually used to have the high profile professional art, for example in dance, like, having the perfect bodies… like the-
Vicky: Sculpted and, like, trained.
Filip: Exactly, they are perfect.
Filip: And we want to see them, how people are perfect on the stage. And, then, when you put the disabled dancer, like, to the professional ballet dancer, the audience will say, “Yeah, but I would prefer to see the ballet, because they are much more skilled.”
Vicky: How can a person that is able-bodied, that perhaps has not heard of, like, theater performances that include disabled people, how can they be an ally? How can they support people with disabilities? How can they be more inclusive? People that probably haven't read much about disability, haven't met people with disabilities, maybe. What can they do?
Filip: Ah, I think something that maybe is helpful is just to be curious and open, and that's, for me what art is for. This presence of disability on a stage, it’s really bringing something unknown, something uncomfortable, something that is undermining the norm.
Vicky: And on that message, I want to thank you [laughs] for being our guest. So, my conclusion would be to just be curious. Be more curious, and be more open. And approach things-, maybe sometimes things are unknown, but approach them with curiosity.
Vicky: Approach them with interest and see what comes out of it in the end.
Filip: Yes.
Vicky: Thank you so much, Filip, for being here.
Filip: Thank you very much!
Vicky: What did you learn in this episode and was there anything surprising?
If you're tuning in on the audio-only version, I suggest you check out our YouTube video. You'll be surprised at how colorful it is. And if you have any questions, comments, or have any ideas of who you want us to invite next, you can write us an email at freaks@dw.com.
Bye from me, and remember: be kind, be patient and be understanding!