S03E15: Verstandelijke beperking in media - Van eugenetica tot Rain Man

In deze aflevering bespreken PhD student Lesley Verbeek (Open Universiteit) en co-onderzoeker en ervaringsdeskundige Daniëlle Amelsbeek (Eemhart) hoe zij op inclusieve wijze onderzoek doen naar stereotypes en stigma's in films over mensen met een verstandelijke beperking. 

In this episode, PhD student Lesley Verbeek (Open University) and co-researcher and expert by experience Daniëlle Amelsbeek (Eemhart) discuss how they conduct inclusive research on stereotypes and stigmas in films about people with intellectual disabilities. 

This episode is recorded in Dutch. Please find the English transcript at https://www.rmes.nl/rmes-podcast-talk-media-to-me-s03e15/ 

Transcript

Transcript of Talk Media To Me S03E15: Intellectual disability in media - from eugenics to Rain Man

Lesley: Welcome and nice of you to listen to Talk Media To Me. My name is Lesley Verbeek, I am a member of the PhD council of RMeS and I am doing my PhD at the Open University on media representation of people with intellectual disabilities. That PhD was funded with an NWO Starting Grant as part of a broader research project on this topic by Dr. Bregt Lameris, who is also my supervisor. 

In this episode, a conversation follows between myself and my co-researcher Daniëlle Amelsbeek, partly about the way in which the stereotypes and stigmas we encounter in the films we watch may or may not be recognizable in our own lives and partly about the common thread of, for example, eugenics that runs through our research. We do this in Dutch, because it is more accessible to Daniëlle. And I also come back twice in the recording with a voice-over to explain some things that we mention, but don't quite explain. But first Daniëlle's introduction.

Daniëlle: Yes, hello. Daniëlle Amelsbeek. I am an expert by experience at Eemhart. I have been doing this for about six to seven years, with great pleasure. I myself have a number of physical, mental and visual disabilities. I affectionately call myself "the IKEA closet", because a few things have gone differently than I actually wanted in my body. Nothing to do about it. And at one point I wanted to do something with the injustice that people with disabilities have, you know? You always have a position that is not always convenient. At the age of 18 and you receive a Wajong benefit, you are expected, "well, that's it". And then you sit at home, follow daytime activities. And I had a lot of ideas, but I couldn't get them alone. So then I became an experience expert at Eemhart. And I really liked that.

As an experience expert, I start from my experience of having an intellectual disability in particular. What am I up against? How do you deal with guidance? How does guidance deal with us? How can media do a little more? For example, with museums, is that accessible or not accessible? And not long ago Lesley spoke to me. I got to know Lesley in another study, on a different subject. And then Lesley told me that she was also doing another study on media representation. And then I thought, "ooh, that seems really cool!" 

Because I had an interest in media from an early age because of my brother, who has also been working in the media for a long time. Or has worked. And I actually always found that the image that there is on TV is always a bit, well, not always friendly. It's like people with Down syndrome who have a wish. They are cute, they are cuddly. And well, I'm a lot of myself, but I don't think of myself as cuddly and cute. Rather not. I just want to tell it like it is. And you often don't see that. So when Lesley asked this, I thought, "nice, that seems really cool." And well, that's how we do it. That was too long an intro.

Lesley: Yes, thank you. A very good, really good intro. I will tell a little more about myself. I have become interested in the subject of media representation of intellectual disabilities, or disabilities at all, and now very specifically intellectual disabilities, because I am a close relative. I am sibling of a brother with severe multiple disabilities. And I just noticed at one point during my bachelor's degree that.... well, I studied Art, Culture and Media in Groningen, which was a very good program. But there was some representation of disability missing here and there. I just thought, "where is my brother in this whole picture of media and art and culture?"

And then I actually started researching a bit more myself: How are people actually represented in film - and specifically film, that was part of what I was studying. And that is my interest. And also because I thought of film has a lot... I think film has a lot of impact on society's potential. Because it is... Of course, it can confront you with certain things that you might see a little less in real life. Like someone with a disability. You see them a little less in the streets. Especially intellectual disability. And certainly severe multiple disabilities. For many people, film or other forms of media is actually the only way to come into contact with someone with a disability. And then that has to be done properly, of course, that representation. Because otherwise you will of course get a distorted picture.

Well, we are now doing research on that together and I can remember from interviewing you for that other research that I just noticed that you also had an opinion about many other things. And then I thought, "you know what, I think I just have to have her, I think we'll work it out together." You really have a good strong opinion, but at the same time it is also open to many new things. And I also noticed then, "oh you are also very critical of society", and that is of course also useful in a researcher. And yes, I think it's going well so far.

Daniëlle: It's certainly going very well. I also think it's a very nice collaboration. In which, I think we have been on the road for a little over a year now, in our journey towards inclusion. 

Lesley: We started together in August last year and I started the PhD two years ago. 

Daniëlle: Of course, we have watched a lot of films in the meantime, together and separately. 

Lesley: Yes, definitely. And how many were there again?

Daniëlle: I think there were about 80. Well no, we are now at 80, because of course we had to watch a few of those eugenics movies again, unfortunately.

Lesley: Yes, that's right, so we're around 90 now, I think? 90 movies?

Daniëlle: Yes, 90 films. Some short, some long, some good, some less good. Maybe we can tell you more about that?

Lesley: Yes, we can elaborate on that a bit, perhaps. I'm thinking about a bit of the angle of equality, whether or not it is present. And whether anything has changed in the past year. Because of course we had an evaluation in which you also had something to say. And maybe we can talk about that progress for a while. And also just that story of how I will soon have a title and you won't.

Daniëlle: Yes, let's name the most annoying thing first?

Lesley: I would say, fire away.

Daniëlle: No, it is of course a fact that Lesley does indeed have a title after this, a very nice title, which she has of course earned immensely. And I'm done after this and of course I have an incredibly beautiful experience with hopefully one day maybe another extra research that can result from this, but otherwise that's just it. And every now and then, yes, that shoe pinches a bit every now and then. On the other hand, yes, I just don't have that title, unfortunately I didn't reach that level of education... Should we talk about my school by the way? Is that interesting?

Lesley: Yes, I think so.

Daniëlle: Okay, can I do that right now?

Lesley: yes, throw it in.

Daniëlle: Yes, no, I followed special education. And I got VMBO-TL there in six years. That school was incredibly nice. Really just fun. Beautiful people. But very, very protected. I always jokingly call it "the Disney pond" because everything there is lovely and cute. If you have a conflict with each other, then you are actually expected, we will solve that during English, so to speak, because that has to be resolved. Keep having fun with each other, that's important. It's fun and the classes were fun too, the subjects went well. Some, that is also something that happens to everyone, that one goes better than the other. But what struck me most is that it is mainly very protective. And, yes, turning on the kettle, that was not allowed, so to speak, because we could burn our fingers. And cutting apples, well, rather not, don't. You are not allowed to leave the school grounds. The school was in a forest. On the other side was a heath and there on the other side was a highway. Yes, quite dangerous, with people in wheelchairs. 

So it was protective and when I finished my VMBO-TL, then I and not only I, but other people also had to go to the ROC, because I now had my VMBO-TL. And there it was a very hard school all at once. That was hard, a lot. The courses were not too bad, but it was especially difficult to deal with people who did not have a disability, who talk about other themes at once. I had no experience with Twilight with me at all, to take an example. I didn't know that, because we didn't have that, we didn't discuss that. We did UNO in conversations during music. So I just had to get used to that, also to the social aspect, but also that I had to go there like that. 

Lessons were also in one go, one lesson was from 10 to 2 and the other lesson was from 9 to 5. I had never experienced that before. Yes, my lessons were just from 9 to a quarter past 3. And I was picked up by a taxi van and taken home by a taxi van. From top to end, everything was just directed and arranged. And now all at once I had to do it myself. I also had the misfortune on my own side that I got sick. Just before my final exams. Which actually put me 2-0 behind when I started at the ROC. And yes, then finally I really tried it with MBO 4 and also eventually, hopefully come up even further. But I just ran into too many struggles. As a result, I eventually ended up at MBO 2.

And I rolled into the daytime activity world a bit. Whether or not by my own choice. But yes. I did experience beautiful things there. But that made the school path go in a different direction. And a PhD is very far for me. Very far away. So joining someone else's PhD, which I still have a very warm heart for, is very nice. But long story short. It sometimes pinches that Lesley gets a title next to her name after this. And I don't. Anyway, no one will ever take away from the experience. And watching movies will never be seen differently since I know Lesley.

Lesley: Yes, that's really inevitable. If you start watching movies analytically, you can no longer watch them normally or relaxed. 

Daniëlle: Then you do indeed look at even a good Harry Potter movie or Disney movie very critically in one go. Then you see stigmas and stereotypes everywhere. And now I sometimes bother my fellow man or family members, acquaintances with "look at that stereotype in that movie", "what a stereotypical character trait in Dirty Dancing that is". 

Lesley: Yes, so that's really very recognizable. 

Daniëlle: Or, "that's the gaze, which I see there."

Lesley: Ha, the gaze, g-a-z-e. 

Daniëlle: Yes, yes.

Lesley: Let's think, I had another question. Oh yes, do you sometimes think it's a shame that you can only look at something very critically? Or can you also lose yourself in a movie?

Daniëlle: Sometimes I think it's a shame, because it's a bit sometimes of, yes, that you almost always hear that I'm always working, for example. Instead of relaxing watching a movie. But it has also brought me something so beautiful. And it is also another talent that I now have again. And what I can also teach people. So that's really such a superpower. No supercrip.

Lesley: No supercrip, yes. 

Danielle: No supercrip. Just a nice power. And just something nice that I discovered. And with museums I have also discovered that power in the meantime. And sometimes it faded out a bit. So it is not always present.

Lesley: We've already mentioned two academic terms. The gaze and the supercrip. So maybe we can pivot a little bit to that now.

Daniëlle: Yes.

Lesley: And maybe say something about the content of our research together. And how we see that reflected in our own lives. Because of course it all runs very parallel. It's also kind of what you just said, that the road to a PhD might be a bit closed for you.

Daniëlle: Because of physical and mental limitations.

Lesley: That and of course the barriers that are thrown at your feet.

Daniëlle: Yes, that's right. Personally, I would really like to go a little further. And I still sometimes, very occasionally I think, "I'm going to get my MBO 3. And then I'm just going to climb that whole summit again myself." But then the question I also ask myself is, "who am I actually doing it for?" Do I do it to meet the standard that everyone still expects from me? Like, look at me, I can do it anyway. What do I achieve with that at the moment? I am also 32 years old now and of course I am never old to learn... 

Lesley: No, definitely not. 

Daniëlle: But I do gradually think of "yes, that part is going to be difficult". Also because I still have to take into account the fact that my body sometimes just works well. And other times it doesn't work as well. 

I have learned through our research that I can work hybrid very well. I can now work from home, I have now discovered that, whether or not by you, also because of the distance where we are of course both... In which we both live in other cities. That I can actually work very well from home. And then I do have something that I well, that I can possibly take with me if I ever start looking for a paid job, of, gosh, I have worked really hybrid these past three years - can also put it on a resume - several days a week, and I can do that just fine now.

Lesley: yes it does give some extra accessibility.

Daniëlle: yes yes yes definitely, I do think that through our research I have started to believe more in myself and also in my value, so...

Lesley: I think that's very nice to hear too. And I think it's ... It's a shame that... Suppose we were to try to do something official about a title, then it can never actually be something official. So then it is an unofficial kind of certificate. And we both think that's a bit belittling.

Daniëlle: Yes, I don't really believe in a certificate of participation. Or that a title is made up that is not there. Because it is not legally valid, in the end. When push comes to shove. Then the OU might be able to say, "nice job." But when I do knock on the door of another organization, it's, "nice that they said that, but it's not legally valid." It would just be cool if it is more than just a nice certificate of participation. Or another cliché title like "the tough researcher" or something, so to speak, another cringe title that really disgusts me.

Lesley: Okay, let's make a bridge to those stereotypes. Because then we can also talk about the supercrip. Because that's of course that inspiration porn. Just to throw those terms out. Stereotypes is a very large part of our research. Because of course we look at how people are represented in the media. For example, do you recognize yourself in that? Or I my brother? Or if a loved one plays in a film that I recognize myself in it? And there are an insane number of stereotypes that are used. And which have been used as a medium for people with disabilities since the beginning of film. And supercrip is one of them. Maybe you want to explain in your words what that is. And of course we also have a somewhat broader definition of it with examples. 

Daniëlle: Well, if I understood him correctly. A supercrip is someone with a disability who has a super talent and who can do something very well. And therefore can transcend such a limitation. Look at Rain Man who can count cigarette lighters in no time. 

Lesley: Ja, matches, lucifers.

Danielle: Matches, thank you, can count or Forrest Gump who literally runs out of his disability. And there are some films like that someone can box very well and only then is seen by his father or mother as worthy. It's a term that doesn't make me very happy, because you're worth something no matter what you can or can't do. I mean, why should you value super talent? You just create a very unrealistic image, because some people don't live up to that. They can't have that image. They don't have the supercuteness factor or something. They can't box very well, despite limitations. They're just normal, you know? 

If you have a disability, then it is quite often expected, then you have to meet a certain standard to become one. If you can do that, then you belong. Even at the school I attended. It was very much emphasized that if you had achieved VMBO level, then you mattered. And I also noticed how arrogant – oh, people are not going to like this - my classmates sometimes became almost like, "look, VMBO is coming." As if we were some kind of royalty.

Lesley: As Stella Young said… Stella Young is a disability activist and she gave a very nice TED talk in which she talks about inspiration porn. And she calls it that because, as an example, she uses a top athlete who uses leg prostheses, for example. That he was used in a kind of advertisement, I believe. And then it was very much about if he can do it, you can do it too. There are no limits. As long as you just work hard enough or run hard enough, whatever. And she says, "that's actually very objectifying," so hence the term inspiration porn, because of course that's also an objectifying medium usually. 

And she also says she used a wheelchair herself and she got an award at one point, when she was in high school, for that, I don't know,  just exist, or something. Or just participate. And then she said, "gosh, I just get a prize because I manage to get dressed and go out the door in the morning." She hadn't done anything special at that moment in her life. And so that's what she did that TED talk about, to make a kind of indictment of that.

Daniëlle: Yes, I think it was also something that she was waiting for her to say something inspiring. She went to another school, to a high school to teach. Then there was a certain child or something who asked when will there be something inspiring or something, your inspiring text or your quote. 

Lesley: Yes, because he only had her in the context, or he had only seen people with disabilities in the context of them coming to tell something inspiring. While she just came to tell something about her own field. Let's think, because we still have so many stereotypes that we can discuss, but are there a few that stand out for us?

Daniëlle: I think especially the childlike. It also gets very bad, as a child you are put down, that you can't do anything. And that is unfortunately, I live in a residential group myself, which I also see, high terms are used against people with disabilities. 

Lesley: High-pitched voices. 

Daniëlle: High-pitched voices, "are you going to do something fun on your bike? Good job! Yes, good that you got up with your bike!" High terms, diminutives, children's music. I know, a few years back, we were cheered up. It was of course corona, lockdown. A very nice person came to cheer things up. And that person already came in with high-pitched voices that he used: "And put your hands up. Yes, good job." And then in combination with Dutch classics. Well, there's nothing wrong with that. I'm also an André Hazes fan. All nice. Or the folk repertoire. But the combination is often of, If you have an intellectual disability, it is often in Dutch. Folk. Diminutives. And high-pitched voices, which people put on. And then I think, "that's a bit of a nasty combination". Because then you are seen as a child, instead of as a person. And I find that very disturbing. Because, you know, every person, at some point you are no longer a child. At some point you reach a certain age and then you are no longer a child. And I once gave a lesson about this as an experience expert, that a supervisor said, "yes, yes, well now that you mention it, yes even those people who can't say it would probably think so." Yes, they probably think too, "dude, talk normally for a while. Do you talk like that to your neighbor?" 

Lesley: yes or maybe you feel it or something? I also had one time: my brother had a physiotherapist for a while at one point and he came to our house and was a terribly nice person, so I'm not going to say anything bad about that, but it was a bit in her system to talk to him very loudly. He doesn't talk, he understands a few words here and there, because he's heard it all his life, but basically he has no language. And then it's like, "he's not deaf, he just doesn't speak a language. So there's no point in talking to him very loudly."

Daniëlle: That is also such a weird thing indeed, that people think that right away. 

Lesley: But it is perhaps a bit similar to what you sometimes experience, that people talk over you. Or that people are talking to someone else instead of you. While you are just there.

Daniëlle: Yes, no. That my boyfriend is seen as my care worker. Or when we once did something together during an investigation, that they talk completely to you and that they just ignore me. Stand with their backs to me. Or the most horrible thing I always find is: "what does she actually have?" While I think, "dude, hello. I'm just sitting here..."

Lesley: You're just there, yes. 

Daniëlle: "I can just talk. Hello, hello." I find that very disturbing. 

Lesley: I think that's interesting that it is indeed labeled as the stereotype "childlike." You see that very often in movies too. But then I think: you also have something like child studies and that is actually a field that also looks at how do we actually treat children? And is that actually completely okay? Should you talk to children in such a high-pitched voice or should you just treat them like people? Because you can make contact with children. You can have very good conversations, often with children. And by actually belittling them in that way. Yes, that is also, that is also a bit dehumanizing. And that is then extended indeed to ordinary adults with intellectual disabilities. Yes. But you shouldn't necessarily approach children that way either. 

Daniëlle: Quite weird anyway, because I've been on the bus with, well then I'm in it myself, then there is also someone with Down syndrome, a fellow resident, then he is also on the bus, for example. To me they react a bit grumpy, "well, I have to check your tickets." And then that person with Down syndrome is talked to very high-pitched like "hey, show me your card, yes. You're on the bus here for the first time? How nice to have you here!"

Lesley: Oh gosh…

Daniëlle: And then I think, as soon as I would unmask myself in quotation marks, would that term also be used with me? Will that expose you like that all at once? And I had something so crazy yesterday, I was sitting yesterday I went to the Christmas market with a friend and I was in my wheelchair because I can't walk that long and I was apparently in the way. And then a woman said to me: "Yes, I'm going to put you aside for a moment." Instead of, "girl, can you just roll the other way?" 

Lesley: Yes, she just took your wheelchair?

Daniëlle: Yes, she just took the wheelchair. And he pushed me aside. And then I really thought, "what is happening here all at once?" 

Lesley: That's really not OK. 

Daniëlle: That's really not OK. It was very strange. Yes, very strange experience. That I think, I can basically get up. That you don't know that, that's possible. There is also a very big prejudice about that. If you are in a wheelchair, you can no longer walk. A weird prejudice that, the ambulatory wheelchair user, does not exist in a lot of people's brains.

Lesley: Yes, of course, that you stand up and then shout "I'm healed."

Daniëlle: "I'm cured, hello!" Yes, I have some nice stories about that too. Indeed. But no, the alternative of "girl, can you just move aside with your wheelchair?" Yes, I can't see through everything either. It's not like dude, I was just on my phone, I was just doing something. I didn't realize that there were people there, that there were wheelchair users in the garden center at once. And that someone just picks up my wheelchair and wants to push me aside and then completely ignores the fact that I'm in it, I found very, very weird.

Lesley: yes, but at that point I think also of your wheelchair at that moment, when you sit in it and use it, it's kind of an extension of your body. So it's like someone grabs you by the shoulders.

Daniëlle: Well, and then I get put aside for a moment. yes, you know, I feel like the kind of shelving unit that she pushed aside instead of... Yes, very weird.

Lesley: Maybe we can also focus on the common thread of this research. We haven't done that yet. Well, that is of course eugenics.

Daniëlle: Yes, cozy. 

Lesley: That's a bit more difficult subject, but I've been working on it myself for a long time. I think since 2019. I think at some point I... Yes, I had read an article at one point. I don't remember how I came up with it. But in the end I had made the link a bit of old eugenics propaganda. Maybe I should explain very briefly what that means...

Daniëlle: I would.

Lesley: At the end of the 19th, beginning of the 20th century, there was a movement in many Western countries. It started in England. And America, and of course has had its peak in Germany, in Nazi Germany. Where eugenics became a kind of popular movement. That was the idea that man is very malleable. And that we ourselves could actually make a better person by removing bad genes and keeping the good genes. A kind of übermensch. And a group that is often overlooked or does not get enough attention is of course people with disabilities. People with intellectual disabilities. 

You also had the T4 program in Germany at the time. And that meant that in the end about 300,000 people with disabilities were murdered. Because they would spread bad genes. Very nice this. And that's what propaganda films were made for. And so the same stereotypes occur in those propaganda films. Which we were just talking about. And which are still used in films today. And that is kind of the common thread that we follow. Because it also reflects on the way people are still treated in society. As you just said. There is still belittling. And you are actually only appreciated if you can do something extraordinary and that is actually a fact the same as not being appreciated if you can't do anything and of course we see that very much in now cuts in healthcare, exclusion...

Daniëlle: Yes, you actually cost money a lot, actually. And what we see of course is, a very nasty movie too, that's such a very nasty eugenics movie, that those Germans were making a table, of "this is what it costs" and "that's what it costs" and that "is going to cost the state", or "after 100 years this is it" and blah blah blah. And that sounds very intense and people say "yes, we don't think that anymore," but yes in principle, the cuts that are indeed there, refusing to adjust things - that all costs money - refusing to make inclusive education, because it also costs money, money, money, money, money. Anything to counteract that inclusion is what we are still experiencing with unfortunately budget cuts and everything that surrounds it. So yes, money still plays that role. And that's what it played in the 30s, 40s and that's actually still the case.

Lesley: Yes, of course we don't make a one-on-one comparison with the heyday of eugenics. But there are many disability academics and activists who just constantly draw that comparison and who say, not one-on-one, but of these are the kind of remnants, the remnants of it. So that philosophy is still very much alive. In practice it looks different, but that philosophy of inferiority is very much alive. And we see that in movies as well. Maybe we can make a comparison between Ich Klage An, because of course we saw it together, and Me Before You. 

Well, here's a voice-over to briefly summarize the films we just mentioned. Because Ich Klage An, that's a Nazi propaganda film from 1941. And it was commissioned by Karl Brandt. And that was Hitler's personal doctor. And also by Joseph Goebbels. And that was, of course, the minister of propaganda. And in this film, a woman with MS is helped by her husband, who is a doctor, in her choice for euthanasia, after other doctors refuse because it is not legal. And therefore, the spouse must defend himself in a court case where he argues that euthanasia is the human and morally right thing to do and that refusing this option is a cruelty against humanity. 

And in Me Before You, which is a 2016 rom-com based on a book, the protagonist has an accident that leaves him paralyzed. I think it's called Tetraplegia. And he is convinced that he has also lost his masculinity and his value. And the happiness and success he once had now seems forever unattainable to him. And for that reason, he convinces his partner and parents to take him to Switzerland, because euthanasia is legal there. And in the United Kingdom where he lives, that is not yet the case. Because I make that comparison between those two films, it must of course be said that Daniëlle and I both believe that euthanasia is or should be a right. But in Ich Klage An,  what would normally be a very legitimate argument for self-determination is being abused to get public permission for that T4 program we mentioned earlier. And about Me Before You there is now a short explanation in that context. 

At one point at Me Before You, there were a lot of disability activists who boycotted that film. They have called it a "disability snuff" movie. For example, the slogan was Me Before Euthanasia. Give us adequate health care first before you offer us that path to euthanasia. That reminds me of a political comic I once saw. That was an image of someone in a wheelchair. There were two doors with a step. One was health care and the other was euthanasia. And the euthanasia door was wheelchair accessible and the health care system had a staircase. 

Daniëlle: Oh gosh yes. 

Lesley: Yes, I found that very appealing. 

Here again from the voice-over a short explanation of that comic, because instead of health care there is "suicide prevention program" written above the inaccessible door. And that same comic has been adapted into a Tim Steenton article and then there is assisted living opposite that accessible door with the text assisted suicide. That original comic is by Amy Hasbrook of the organization Not Dead Yet in the United States. The slogan Me Before Euthanasia is also from the same organization. 

To make a bridge to the next topic. After this we discuss the gaze that is often present in movies. And then briefly the American non-profit organization Sproutflex. This is a database of films that are made inclusively where people with intellectual disabilities are both in the cast and in the crew. 

That's a term coined by Rosemary Garland Thompson. She is a disability scholar and she, or at least, the "gaze" is of course by Laura Mulvey. But Rosemary Carlin Thompson has applied that to disability. And that means that people, or the gaze and the stare, that people look a lot at people with disabilities through a certain lens. That you are stared at, of course you have that too. That you do experience that. 

Daniëlle: Definitely, definitely. The staring looks.

Lesley: yes, and that you have different kinds of going to look, that people sometimes stare out of curiosity... out of a kind of fascination, out of fear.

Daniëlle: Yes.

Lesley: Because, for example, they don't understand what they see. And that, of course, makes you a...

Daniëlle: Yes, that's right.

Lesley: an object perhaps.

Daniëlle: Yes, then I just feel more like that kind of shopping cart... instead of myself.

Lesley: That if someone pushes you aside, yes.

Daniëlle: Yes, if someone pushes me aside or stares at me. And I'd rather they ask, "oh, what's going on?" and then ask me instead of you, so to speak. Because that is still... But, yes, in those movies you also see in a number of them, especially in those eugenics movies, that there is a lot of staring. Or you have to... 

Lesley: There is staring by people, there is staring by the camera of course, and by the audience...

Daniëlle: Yes, by doing such an intense zoom-in session with dramatic music still underneath, that it gets worse, yes, very sad to see. You can just make something your own by applying information techniques, camera techniques and sound techniques. Then you can adjust an entire narrative, because you want a very nice person, for example, who is not wrong, to be portrayed as a kind of monster at once. 

Lesley: Exactly. Yes, and at one point I called that the eugenics gaze. That we actually still look at people with disabilities through that lens of those eugenic ideas in mind. Of course, we don't realize that self-consciously. But that you automatically look through a certain lens with which you grew up in this culture. That someone with a disability is worth less. Or is only worth something if he can do something great. Or that he is childlike. Or pathetic. Or a burden to his family. Of course, we also see that very often in films. 

There is hope, because of course a lot of beautiful things are being made. And certainly in the inclusive atmosphere. Where people are very actively looking for real stories and real emotions. And more realistic images of what it is like to live with a disability. And Sproutflix is a very good example of that, that they make a lot of short films that do something with that. There are also many amateur films on it. So those are really people who make that from their passion to tell that story.

Daniëlle: Yes, maybe film-technically not very strong, as you have said before, but where the story just stands very strong. And that they are really people with a passion for the profession, with a passion for the story. And who apparently really know how it works instead of that kind of cinematic Hollywood-like story, which may be very beautifully filmed and with beautiful music, but yes, raw emotion also works. Then you only hear the clicking of the camera, it's just the way it is. The emotion does come into its own better, even in amateur films.

Lesley: But we may also see a bit of the class difference or the economic difference in that, that amateur film is usually not just someone who has a lot of money or connections. And those are not the stories and films that reach the wider public. Sproutflix is also not known to the general public. Hollywood is of course something that reaches the general public. So that's why we look at it a lot. That's just something that probably influences a lot of people's mind. Because it is so accessible. It's everywhere. It keeps repeating. Everyone knows Rain Man. Even if it is from the eighties. And there are still people who suffer from that stereotype of autism. So I know someone who was diagnosed with autism later in life. Because for that just a lot of people... Well, her psychiatrist said to her at one point, "but you don't look like Rain Man at all."

Daniëlle: Yes, what it really is the blueprint of the autism spectrum. Yes, that's really bizarre to hear.

Lesley: That quite recently someone who is in that profession is so guided by such an old-fashioned, such an old image of the eighties. 

Daniëlle: Yes, gosh.

Lesley: That it is so deeply interwoven.

Daniëlle: Yes.

Lesley: But one film that we both really like is of course... 

Daniëlle: A little extra something. 

Lesley: And it came out last year.

Daniëlle: It was released last year. A French film. Anyway, French film is pretty good. Because we have also seen Intouchables. That is also a film that was made with passion. But Un P'tit Truc En Plus, in my opinion it is - even the main character, who also plays, who is a kind of director, who came up with it, in my opinion. I think I read that. 

It's a very simple story, I have to say. Two bandits. They rob a bank or a jeweler. But of course they want to flee from the police. And what do they do? They enter a random bus of people with intellectual disabilities who are going on holiday. Coincidentally, one of them is still missing, who has to come later. So they pretend to be someone with an intellectual disability. The other pretends to be a care worker. Yes, and then they have to play that they have a disability. And yes, "you have to do it this way, you have to keep your tongue like this." And what is very special, the care worker doesn't notice anything, but the people with intellectual disabilities understand it flawlessly: "Yes, sorry, but you're acting, that's not right." And that's what is so strong about that film. They are real people. It's not fake. It looks a bit like they accidentally turned on the camera. And just have a good time. That's how it feels a bit. But with a nice budget and with the recognition it should get. That's a very strong thing about the film. That they are real stories, but also that it also raises problems.

Lesley: What I really like is that it also feels like they are very aware of that whole Hollywood thing of actors without disabilities, who play people with disabilities and often get Oscars for it. Because: what an achievement, you have played someone with an intellectual disability. I think they are ridiculing that very deliberately. By indeed at a certain point, so the characters with intellectual disabilities, having him learn that, of, "this is how you do convincing. That's how you play it." 

Daniëlle: That's how you play it and not otherwise. Very strong indeed. 

We actually just really hope that through this podcast, people have had a little more insight into what inclusive collaboration is like. And that it can also go hand in hand, regardless of the difference in education. And we actually hope very much, at least, I hope so, that there will be change in the media. That the media should also look a little differently at disabilities, and then intellectual disabilities. That you are more than just a nice cute face with a nice "inspiration porn"-like thing. But that's about a real person and that there are real stories behind it. 

And that a movie is fun, but not everything is a Hollywood movie. Not everything has to end with a happy ending. Or it very much has to end in death, like in Maybe Before You.

Lesley: Yes, exactly. There is more than happy and death.

Daniëlle: Yes, there is more than... Yes, exactly that, I think. 

Lesley: Yes, and I also wanted to say, I think this has also been a good practical example of how we work together. Because this is actually how we always talk through everything. When we talk about movies, it's always exactly the same. And we give each other insights that we might not have been able to have individually, because we have other lived experiences. 

Daniëlle: That's right. 

Lesley: And maybe also give each other other other ideas. And very occasionally they don't agree with each other, but most of the time they do.

Daniëlle: Yes, actually. Quite often we agree with each other, indeed. Yes it is.

Lesley: So that makes it easy again. But at the same time, I think we don't shy away from difficult subjects. The fact that we, as a person with disabilities and loved ones, recognize so many things in movies or can say "this doesn't make sense," or "this is unrealistic," or "this is exactly what I recognize," or "this could be better." That is actually the lived experience that we include in the film analyses.

What we also want to expand, of course, is with the focus groups that we do, in which we let more people with intellectual disabilities, different intellectual disabilities, have their say. Because that is of course a huge spectrum. So it's not like we're the voice on ... 

Daniëlle: No, I'd rather not. I am not everyone's voice and I don't want to be at all, because I have a completely different experience than, for example, my neighbor or my neighbor, or a colleague of mine. Don't just go for me at all, rather not. Because I also notice, maybe it is also nice to close myself off there, precisely because of this experience I have also expanded my school a bit, I have also learned a bit of smartness - yes, I don't know if smart is the word - but also a bit of a lot. Many words that were difficult in one instance, I now also know them through our collaboration.

Lesley: Yes, because of course it never necessarily stops.

Daniëlle: No, so I really like that.

Lesley: I really like to see that you are critical of your own words. So if you use the word smart, for example, you say, "oh no, that's a problematic word."

Daniëlle: Yes, exactly. No, so that's it... I also think that we just complement each other a lot.

Lesley: Okay, then that's it for this podcast. Then we will have a nice lunch.

Daniëlle: Yes, delicious oat cappuccino’s! 

Lesley: The end.

Daniëlle: The end.