Woman’s Voice: From DisArt Productions, it’s DIStopia.
[Rock music continues to play and then fade into the background]
BBC = British Broadcasting Corporation
IMDb = Internet Movie Database
UK = United Kingdom
US = United States
CS: Hi everybody, welcome back to a special episode of DIStopia. I’m your host Christopher Smit. We’re breaking our normal episode release schedule to bring you some thoughts about a new film that’s come out that’s ruffling the feathers all over social media and not in the good way. We are talking today about the just released MGM film Me Before You (in a whiny voice), a sweet little tale of love and suicide. Yes, you heard me. The film, based on the novel of the same name by Jojo Moyes, stars Emilia Clarke, or Mother of Dragons from Game of Thrones, and Sam Claflin from the Hunger Games movies. Claflin plays the unbelievably wealthy Will Traynor, a perfect specimen of a man who gets hit by a motorcycle on his way to climbing Mount Everest or whatever… He becomes…da da dum… wheelchair-bound. Emilia Clarke plays an awkward small town gal who answers an ad to be a caregiver for Capt. mountain climber turned party pooper, and romance and hilarity ensues. Here’s how MGM (Studios) describes the film on the website IMDb: A girl in a small town forms an unlikely bond with a recently-paralyzed man she's taking care of. Now look, as if it wasn’t insulting enough to use the word “unlikely” to describe the relationship between the disabled man and an able-bodied woman, the summary also leaves out the fact that the woman helps kill the guy because he can’t stand being disabled (no pun intended). So, look, why do we care so much about a stupid movie? Why do we give a shit? Well here’s the thing… These movies do a lot of “work” in our everyday lives… Even when we don’t think they do. You know, we’re at the theater, we’re eating popcorn, we’re holding the hand of our girlfriend or our boyfriend. Look, these films are indicating a sort of reality that ends up mixing around in our consciousness. And in the case of Me Before You, the insidious suggestion that being dead is better than being disabled is mixed in with romantic comedy. You’re laughing, you’re crying, and then you feel good when the son of a bitch kills himself. It’s tough stuff. But in its darkness, it’s absolutely ridiculous.
So today on the show we have a couple interviews that help us get to the bottom of this cinematic predicament. Three conversations, three different vantage points. We talked to a very famous disabled actor and activist, we talked to spouses of disabled men, and a disabled filmmaker from Oregon. We’re going to take a look at things from all angles to try to get a balanced view, but I should warn you… In the end, just like for poor Will, things don’t turn out that good.
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First up. We reached out to a friend from London, the actress, comedian, artist Liz Carr. Among other accolades, Carr has been one of the few disabled actors in the entire world, mind you, to be a regular cast member of the hit show, Silent Witness, an ongoing serial drama much like a Law and Order here in the United States. She’s a hilarious comedian, currently working on…okay, wait for it… a musical comedy called Assisted Suicide, the Musical, hmm, which will premiere in London this fall, and then I’m sure it’s going to be all over the world. Liz and I get the giggles when we talk and so I just left it in there. I didn’t edit it out. But we had a great time talking about her very successful protest of Me Before You last week in London on the Red Carpet with her group Not Dead Yet. Enjoy.
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Christopher Smit = CS (interviewer)
Liz Carr = LC (interviewee)
CS: So, walk me through…Okay. So, the movie comes out. We all know it’s coming out and it’s like a tornado approaching and we all know to take shelter but then we all are…when I say we, all of us who take attention to this stuff, pay attention to, you know, what’s coming up the sort of imagination train for people and this movie pops up. The book’s been out for awhile. It was on the New York Times best sellers for, I don’t know, like a whole year…
LC: 5 years.
CS: 5 years?! Good lord.
LC: It wasn’t. I’m lying. I think it was 12 weeks.
CS: You said 7, 5 years… (laughs)
CS: So, we know it’s coming but then how does everything get organized, how does…what tips the boat for you guys?
LC: So what happened…it was John Kelly in Boston from Second Thoughts and from Not Dead Yet and he contacted me over the weekend so the protest is on a Wednesday. He contacts me the Saturday or the Sunday and he’s like, “Uh, we’re going to do stuff for Me Before You, whatcha reckon?” And we started to chat. We’ve chatted before. We’ve worked together on protests internationally and it was kind of like, I said, “You know I’ve thought about doing the Red Carpet thing” but it was on Wednesday. Really we had no chance of doing anything. Then begins the conversation. He’s going, “We’ve never thought about doing the Red Carpet. When’s the Red Carpet?” Oh, it’s on Monday. (CS and LC laugh) It’s in two days…it’s tomorrow. And so all systems…it was just this, this avalanche of yes, we were all aware of it. Yes, I think particularly Not Dead Yet in the US were planning on doing something. And it was much more on their agenda. I knew about it, but I’ve been working and it’s just really funny…we’ve chatted about it, we have a secret facebook group where we organize stuff. We had kind of been talking about it, but not really. And then, I suddenly got a bit of time. Essentially, I didn’t have any time. I had stuff I had to do that I didn’t want to do so I thought, “I know what. Let’s give this a little bit of weight” and before we know it John’s off trying to organize a protest and trying to get from Boston to New York overnight, essentially, so he can be there for the Monday; this is now Sunday. And we’re trying to get a protest out for the Wednesday for the Red Carpet and it’s going to be in central London. I live in central London and so then callout went firstly with a sort of an email group of people and then into the message that the facebook group and it was kind of like, “Whatch you reckon?” Because I needed critical mass. I wasn’t brave enough that I was just going to do it just on my own but, really, critical mass I needed numbers to make it possible was like three. I thought, “Three’s fine.”
CS: Three’s fine! (laughs) Three is critical mass with disabled…(laughs)
LC: With crips it’s an onslaught. The weather’s not been great so it was quite cold, it was an evening, there was no notice. You know, the logistics of getting our bodies with transport and PAs and assistance out and motivated in this short space of time. Chris, you have to get excited about 3 people in the same space. You know, don’t you think.
CS: (laughs) It’s a Herculean effort, man.
LC: You see...You know it’s exactly what we’re saying and it’s exactly what the film doesn’t get so once I had a couple of confirmed people and I knew Jo, my partner, would be there come hell or high water. It was like, “Okay, let’s do it.” And then we have an amazing guy in Not Dead Yet UK, Brian Hilton who takes images and just creates a lot of images around what we’re doing and another guy, Martin Paykol , who’s a great campaigner. Going back 20-30 years has been at the forefront of the UK crip movement and the three of us just went, “Let’s create some images.” Martin said, “Let’s have a flier. I’m going to write it tonight.” He did it. I think I got the email about 4/5 in the morning. Brian, in the meantime, had taken the image of the film and he was creating stuff around what Martin had written and, before you know it, we had text and what was amazing is that Brian had the vision, really, to make a name of it for twitter and social media that was kind of, “You know, this isn’t a romance, this is a snuff film that says that we’re better dead than disabled” using their own imagery and then people were coming out with the hashtag. Like use their hashtag, #liveboldly which we were insulted by. But also somebody came up with...I think it was Brian who came up with the “Me Before You no Me Before Euthanasia”. It was incredible and very exciting actually; wealth of ideas and creativity and passion and anger and collectivism and that was it. And before you know it, we’ve got three people, then it’s four people, then it’s five people. We’ve got Dominick Evans who’s starting to tweet the name to all people around the world and it takes on this momentus kind of, yeah, just a momentum. And two things happen that haven’t happened I don’t think in a long time, if ever, is that we had a pretty high profile protest backed up with social media.
CS: That’s right.
LC: A torrent of social media. This wasn’t just people on social media having a go. There was a very real thing to pin it on that got it in the press. But the press just had to go on twitter and they had their stories written. Some people’s stories had nothing, hardly anything to do with the protest; it was all about what people were saying on twitter. So we now have this international protest where we’re all on the same page and we’re all angry at the same thing. You know, I don’t know that anything’s done that before. It feels like it’s the final straw for lots of us. Where whether you’re angry that the character, the wheelchair using guy, not terminally ill, just disabled decides to end his life at an assisted suicide clinic in Switzerland at Dignitas. Whether you’re at that or just angry at the pity party and the bad representation of the whole film, it’s brought people together at different levels of politics, at different levels of understanding and it (inaudible…).
CS: Well, what I find really...I went to Live Boldly and I was laughing and a little bit emotional because you have all this bullshit celebrity fuckin’ gossip. Like, “Oh here’s whats her face from Game of Thrones, you know, the Queen Teneris or whatever the hell. And here she is with a bathing suit and (high pitched voice - “oh, that’s great”) And the guy and all the (high pitched voice - “oh and isn’t he cute”). But then pinched into that river of crap or floating in the river of crap is a bunch of us saying, (in a projected voice) “This fucking sucks…get the hell.” That’s just beautiful.” I was laughing and then I was just astonished by the power of new media and what it allows us to do. (laughs) And it doesn’t seem to me...I guess...I’ll give a nod to whoever’s running that, they’re not taking us out of it, they’re not editing it at all so, you know, whatever.
LC: The problem with the protest. So you know, the New York one just couldn’t happen in time because it was overnight and it didn’t. But the online protest did and now what’s happening is the film came out on general release the 3rd, which is today. But in (Inaudible)…there’ve been all sorts of special previews, but also today that’s it. In Australia it’s in two weeks time and so, because the general release people, particularly in the states, but not just but mainly in the states are going to their local cinemas, they’ve all got the same banner, “Not Dead Yet” in the US to support of people to buy the banner, to get a leaflet printed, or not, but just to go there in pairs or more and sit outside and generate discussion and talk to people about this message. And like I say, in Australia they’re going to do the same in two weeks. I have never ever, I mean I’m overwhelmed, I’m proud. Yeah, it’s just…it’s a phenomenon and I am so…I’ve never felt so kind of part of this mass community before and social media has allowed that to happen.
CS: Now, on your BBC documentary project did you go to the place in Switzerland that he’s talking about? You went there?
LC: So I did a documentary on BBC called
It’s called the Little Blue House on an industrial estate on carriage way and across the road there is, I shit you not, there is an archery shooting area. And we’re just like, “there’s all these targets”. It couldn’t be more beautiful. But it’s a horrific place and I know people who have seen the film who said it glamorizes it being this beautiful chalet.
LC: Maybe to just talk for a minute as well about the protest itself. So it was really cold and there was about 4 people who turned up.
CS: Oh…even bigger than critical mass! (laughs)
LC: (laughs) It was, it was. But we did have a lot of press and, again, press were coming in via twitter. So, again, people had been hearing about it. So I go up with Jo (Liz’s partner) to the area where it’s happening. So the Red Carpet has all these fans and, of course, there’s massive fans because she, Emilia Clarke, is from Game of Thrones, whatever he’s called Sam blahdeblah, he is in The Hunger Games so you’ve got all these kind of (screeches) “eahhhhhhh” going on and then you’ve got us, right. So I wheel up and there’s the “cripple pen” behind all the fences where the disabled fans are allowed. So, I’m like, (in a curiously sweet voice) “Oh hi. Oh, what’s happening here?”
CS: This looks interesting…
LC: “Is there room? Would there be room?” “Hold on, let me see if there’s any more wristbands.” So he nips into the theater, comes out, “I’ve got you a wristband.” So I was 004. That’s my code name now. I’m 004. And I said, “Well, you know what, I need the loo” because we were meeting everyone down…”
CS: (laughs) The bathroom comes to the rescue…
LC: (laughs) Always, always. Oh my goodness and they know we’re going to be hours so you can get away with not just nipping in. I had run to the theater the day before and the theater was fairly inaccessible. “If you come, the lift is broken to get in, but we can put a ramp in but we need 30 minutes notice.” So, it’s a really inaccessible cinema. So I go back down to this coffee shop where we were all meeting and a couple more people have come and a lot of the press are there. And we already have somebody from The Guardian come and join us and Baroness Jane Campbell who is in the House of Lords, a disabled peer and one who set up Not Dead Yet in the UK. She’s the Diane Coleman, if we’ve got an equivalent, in the UK. So she came down, she’d been working in parliament. She came down. so she was sort of orchestrating the press. But, she’s my god, you just look at her with a cold breeze and she’s got a chest infection.
LC: You know, we’re on delicate ground here and then whenever anyone, another wheelie turned up we’d kind of go and send them, “Go and have a sort of wrecky.” So, at this point we have no idea what we’re doing. We had leaflets. We had a banner. We had a 2 meter banner. And I guess my fantasy was that we rush onto the red carpet, three of us. We just needed 3 wheelies and you hold the banner and that would be it. It doesn’t matter that you’re only there for 30 seconds…
CS: Yeah, because you get the picture. Fuck it, right. Yeah, yeah, yeah.
LC: It’s not about longevity. But then we were like, “Yeah, but we’ve got these wristbands and some of us had got in the pen.” So we decided because basically the pen was on one side and all the press were on the other. And all the stars...we were on the Red Carpet, all the stars come and shake your hand. So we all get in the pen. Most of us do. Jane Campbell stays outside to talk to people and do press and so she can leave and whatever. But there’s like, we’ve got 6 of us and there’s 3 crips in the pen with us who are like hardened, they always go to the premiers. That’s always hard because you’ve got, “Oh, what if the media comes over” and we don’t even know he’s in the film at this point really (CS laughs) and we had our flyers and our flyers kind of looked like the press for them and they were handing out free books and stripey stockings because apparently she has these stripey stockings. So they’re handing out all that and there’s like “It’s so exciting” (said in a high pitched voice) and they all start to come. So now we’re in the pen and we’ve got a metal fence so we’re like, “Hmmm...it’s going to be really hard to run but what if we just start chanting when the big stars come?” because the press is exactly opposite. We’ve got the show.
CS: Yeah, yeah, yeah…
LC: We’ve got the banner, okay, but we don’t know how long they’re going to let us stay there. So this is what happens. So, I think Emilia came, Emilia Clarke, so the lead woman and then we started to think, “In a way, you know, it’s not about her. Do we wait for the big stars or,” at the same time the author, Jojo Moyes was coming and we were like, this is how ramshackle it was, we were like, “That’s who we need to get.”
CS: Yeah, she’s the one. Yeah.
LC: It’s the director or the author and really it’s the author and the screenwriter, Jojo. So, this is what happened. I felt sick for 24 hours beforehand. I felt so ill knowing that we had to do it. I put myself out there saying I’d do it, but these things make me feel a bitly anxious…I don’t want to do it, I don’t want to leave the house,. I said to Jo, “I don’t want to go. I don’t want to go. I don’t want to go out” and now we’re at the point. So she comes out…so she starts at the end and her PA (PA = Public Affairs) and PR (PR = Public Relations) person is kind of like, “Jojo, there’s live news, Jojo, live news.” And, however, the PA also makes eye contact with me and she says, “It’s terribly cold. You okay?” And I was like, “yeah, yeah” but we made this little…we have this little connection.
LC: So, as soon as Jojo..she’s at the next person...I’m freaking out, “What do I, what am I going to ask them? What’s the question? What’s the number 1 question?” Oh, I don’t know. I don’t even know what (inaudible) anymore. (CS laughs) And she’s coming up and she’s like, “Nope, Jojo, we’ve got to take you over to the live press”. So just before she gets to us she gets taken away. But, her PR person looks back and says, “Don’t worry. I’ll bring her back.”
CS: (emphatically) Yes!
LC: But that sort of 3 minutes when she was off doing that interview, was the most...I thought I was going to die.
CS: So like, what’s in your head? (scattered nervous talk) Do I just say “fuck off” or do I “ah ah ah…”
LC: Feeling all those sensations, I’m getting anxiety. I’m having a panic attack. I sit down, stand up. I don’t know what I’m doing. I’ve got to stand up because I’m more comfortable. Oh God, I’ve got a rush of adrenaline. I’m not going to be able to do it. It’s over. (mumbles nervously) I’m just a wreck. I’m a wreck. But I’ve got...Alan Clifford is with me and Anna Lidzey and great campaigners and so we just like, “Right. Let’s get her over, let’s get her to sign the flier...which made us laugh (CS and LC laugh) and let’s just engage her in conversation. Let’s see what happens”. And then when we’ve gone as far we can we will start chanting and we will put the banner out and we’ve got the photo shoot. We’ve done it. So that was it. So she comes over and it was like, “Oh thanks, Jojo” all politeness. “Thanks, Jojo. Alright, do you know that disabled people all over the world are really offended by your book and film? And ah (laughs). She says, “No, have you read it?” and I was like, “Yes, absolutely.” And she goes, “Well, I’m really surprised because in the four years since the book came out nobody’s ever complained or said that.”
CS: (laughs) She’s so full of shit.
LC: (laughs) Really?! Well, you know I’m surprised at that because people on social media are so angry and upset. We believe that your film gives the message, “Better dead than disabled.” And she’s shaking her head and the PR woman, oh my God, the woman that I’ve made this connection with is now looking at me as if, I’m sorry to be cras, but as if I’ve just shat in her mouth.
LC: Just, just…the look on their faces when they realize and all the while she’s signing this leaflet that’s our Not Dead Yet protest leaflet. And she says, “That wasn’t the message I intended to give” and she’s being taken away and I’m saying, “We believe what we want is rights, not charity. Rights not charity. Rights not charity.” And away we go hurridly. The people behind me who were part of the protest were pushing the banner over the metal banner so they could be seen and away we go. The worst people, the biggest fights, were with the other people in the pen. So the guy, the husband, or the partner of the disabled woman next to me was like, “Get that banner out of her face. She’s here to see the stars”. And she’s even complained about me on social media, that woman. What you don’t see from the protest is that she stood up from her wheelchair and was up on her feet most of the time and blocked my way. So she’s mad at me. But we stayed there for the entire duration chanting.
CS: Oh, that’s beautiful.
LC: We threw the leaflets. Many of the leaflets; we threw them onto the red carpet.
LC: And they were steered. Everybody was steered away from us but we were at the end where all the cars drop people off so everyone had to pass us so you had Jane Campbell basically talking to them about what this was about. Then you’d have them come in and we would be chanting. John Kelly came up with the lovely, “He dies, you cry, it’s all a lie.”
CS: Oh nice, nice.
LC: Really nice…”We’re not your pity porn. Me before euthanasia. Assisted to live, not to die. Some of those as well.” And so we kept that up for the next hour. And they didn’t get rid of us. You know, you were saying that. They didn’t take a stand in anyway which I think is a great thing. We’ve been allowed to have this space.
CS: Yeah, that’s right.
LC: And that’s good. I’m not asking them to be censored, you know, I just want them to think about what they’re doing and how powerful... You know, people are going, “It’s only fiction. Oh, it’s only one person’s choice and one person’s story.” “No, it’s about all of those. Yeah, it’s about all of those because of the power that it has.”
CS: Exactly and that’s the whole thing. I hear some people bringing up, “Well, what do you want, do you want to censor art?” “No, but we have to be good stewards of imagination, right? Like we have to be thoughtful about what these films do because so many people love them and they go and they cry and they love and the next time they see me in McDonald’s or wherever they’re going to be like, “He probably wants mmmhmmm… yeah, we should pay for his hamburger.”
LC: You might have read this but Penny Pepper, disabled writer she went to watch it so that she could review it for The Guardian and she said she felt so self conscious in there and coming out it was all very awkward because essentially this guy had a much less worse deal than she’s got in life, in a way, because she’s lived for 50 odd years as a crip. (CS laughs) Crap, he’s only had 18 months of it and he wants to ….You know, she’s lived it, not him. But just that...it does change relations and it’s powerful. You know, they know what they’re doing. They put tissues on the seats on the cinema for the premier…
CS: Like, you know what I love is that there is a seriousness to this but there’s also just some real joy in all this as well and obviously that’s really one of the reasons I wanted to talk to you. Not only cause you were there but because you’ve done both the serious with your work...because I think the work you did with the BBC. It’s phenomenally good but, then, (begins laughing until the end of this thought) you’re working on the musical. The musical Assisted Suicide, right?! Or, ‘Assisted Suicide: The Musical’. So there’s something quite dark and twisted and brilliant and lovely and sad about all this stuff, you know.
LC: But it also, you know. It’s helpful...it’s funny that so much stuff is coming together because when the musical comes out, I will get slagged off that I’m being irreverent about something that’s so sensitive, possibly. And people, you know, this is a serious subject and suffering people don’t want people to suffer. There will be the usual things that are claimed against those of us who oppose the legalization of assisted suicide. However, I’ve been a serious campaigner and I’ve not just stepped up because it’s funny. I’ve not just stepped up because it’s the current thing. I’ve been doing this work. I’ve got a really sound grounding and I’m very supported by a community of activists. So, I’m not just somebody who wants to make a funny thing because it’s the thing to do. In a way it’s there because I’m angry at stuff like this.
CS: Right. That’s right.
LC: …And so the path is here and I’m playing with it, tell some truths and get out some anger and, you know, I think the whole piece is going to be one giant hour and a half of catharsis for me.
CS: (laughs) Right, right. Exactly. Well, that’s what art should be. You know it’s all about catharsis but…(CS and LC laugh)
LC: I know what you mean but because you’re arty I thought I’d better throw that in….
CS: We’re really arty here. But there is this sort of release that we need and I think the heaviness of the topic and the heaviness of life being stopped is so absurd that with enough context there are these moments that I think are so vibrantly important because I always see them as invitations into the conversation. You know, because somebody’s going to look…you know, there was this Frontline documentary called the “Suicidal Tourist” ...
LC: Oh yeah.
CS: ...and I think it’s about that. I think he goes to Dignitas, doesn’t he?
LC: I have a song in the musical called “Suicide Tourist” (laughs)
CS: Oh, okay, good, good, good…(laughs)…so some people look at that and, “Oh I’m turned off by that. I can’t think about it. It’s terrible.” But somebody comes to your musical or somebody reads an article online that’s got a little twist to it and it’s like, “Oh, okay.” So, if it’s an invitation that people are attracted to then you get more people thinking, right? Yeah, it’s amazing.
LC: I think, yeah. Really the film has been a gift to us because it’s really not very complicated. It’s very simple. I mean, it’s a bad film. It’s a bad film in terms of gender; in terms of class. You know, it’s dreadful actually. It’s tragically written and it’s not much better as a film, apparently. So, in lots of ways, it’s appalling. However, you’ve got a disabled guy who has everything. Arguably he’s very wealthy so he has everything he needs. He’s very wealthy and well to do but he’s disabled. He’s not terminally ill and he wants to end. It makes it very easy for us fight (dog claws on hardwood floor in the background) this one because in the past we get told, “You’re disabled not terminal.” This is about terminally ill people who are about to die. This is about Brittany Maynard. This about people like that. We can really emote with them. No, this film helps us go, “This is why a whole community are scared of this legislation. This is why it is about us because when you go and watch that film you don’t see any difference between somebody who’s terminally ill and does (end their life) and the crossover and the link between us in negligible anyway. There is no difference. This IS about us …. And this film has absolutely helped us nail that. One thing that’s happened for us, and it must be happening in the states too, is it has gotten the Not Dead Yet name and what we do out there. Absolutely. More than, more than...we fought against a bill being legalized in the UK. Forget that. Nobody knew who Not Dead Yet was. They all thought the opponents; we were religious people…it must be people who think suicide is a sin. It couldn’t possibly be, you know, everyone’s gotten to be pro-life, it couldn’t be disabled people who are still pro-choice. But it is us and this has actually allowed us to get our name and our arguments out there. It has been a gift; a gift and there are very few things that come in a generation where you can go, “Actually, this is it. This is a page turner and things are gonna change as a result of this.” And I think they are. There’s new people coming on board, engaging with the debates. Disabled people finding a voice. I’ve never seen so many blogs and pieces of incredible writing on politics, on this topic from different perspectives but all from the perspective of a disabled identity. I mean, what else has done that?
CS: And that’s the thing that I guess we have to remember, right?! That some of the best gifts are wrapped in shit, you know, so (laughs)
LC: … I know what to do to yours for Christmas (CS and LC laugh)….Chris, you weren’t at my birthday….(CS and LC laugh)
CS: Hey, thanks a lot for talking, man. It’s great to hear your voice.
LC: You too. You too. We’ll see you for the musical in November, yeah?!
CS: Yes, we’ll be there. Bye.
[musical transition, 31:17 - 31:23]
CS: So much fun talking to Liz Carr… She is a very wonderful way of mixing the darkness and comedy of these peculiar things that happened in the world. Up next, we wanted to talk to the spouses of disabled men, these women who are somehow able to look past the horrors of disability (kidding)… My brother Randy, a guy in a wheelchair just like me, and I. We have some fierce women in our lives… Our wives. And here’s what I did… I didn’t want to get in the way; I didn’t want to be that guy so I just asked my wife Of 20 years, Elizabeth Van Arragon, and my brothers wife of 25 years, Jill Smit, just to sit and talk about this film, it’s premise that death is better than disability, and the assumption the film makes about relationships between men and women when disability’s around… Here’s what they had to say.
[music transition - 32:13 - 32:19]
Lisa VanArragon = EVA
Jill Smit = JS
EVA: So it strikes me that the film is not nearly as funny as the circumstances of our lives are nor is it also as...You know it doesn’t develop some of the intensity and challenges that we live with as well and it’s partly because the film takes place over a shorter amount of time. Chris and I have been married almost 20 years and you guys…
JS: 25 years this summer
EVA: So we have also had this duration of experience with a disabled partner, but, one of the sides is just that a film is never going to capture sort of the “everydayness” of living with a disabled partner and some of the everyday ridiculously funny stuff of living with a disabled partner. (laughs) So, when I think of some of the experiences we’ve had together. One of the funny things that I always remember is when we shared that hotel room in Tulsa and Randy was calling for you in the night and because we have this pattern, Chris will also call for me to roll him because he can’t roll himself. (laughs)
JS: I forgot about this, oh yeah.
EVA: And you didn’t hear Randy and so he was calling you for a good 3 or 4 minutes.
JS: Several times, he was calling me, yeah. Yes, called my name, yes.
EVA: For awhile and Chris just said really quietly, “Hey Jill” and you woke up.
JS: I said, “Yeah, what?”
EVA: We have repeated that story so many times. It’s just so ridiculous and it’s not funny to anybody else but there’s just this sort of humor that’s built into our life that wouldn’t be there if it wasn’t for the strange circumstances of how we live.
JS: Exactly. That was the same wedding that both the service dogs were in the room and we wanted to go party with everybody and we get a call from the groom’s dad that these dogs are going wild. And here they’re service dogs; the best trained dogs you can ever have and they’re barking up a storm and we have to go back to the hotel.
EVA: And this 10 story hotel is complaining about the mad dogs.
EVA: We did have to leave, didn’t we?
JS: But, again. We had been married for awhile by then so we had good senses of humor but you cultivate that and you keep cultivating that because funny goes a long way. Laughter goes a long way.
EVA: Yeah, yeah.
EVA: And so part of what is unclear or part of what I can’t identify within the film is, I think, the story seems to kind of be based on this idea of this beautiful, albeit eccentric woman who, you know, sort of becomes involved with this disabled man. Like that this is an attraction of this unlikely pairing and that was not my experience. I was attracted to Chris because he was funny and smart, cool, a rebel. Like it wasn’t actually that unlikely for one thing. So it seems like that part of this Hollywood story. Like, “who could imagine that these two people would ever get together?” “How could she ever let her life become entangled with this angry bitter disabled man?” (EVA and JS laugh)
JS: Well, that’s true. And I think the context around meeting…you know, I met Randy at college. You met Chris at college. You know, everybody knew him. He was the man. There was a big draw to him. He was funny and charming and sexy and, you know, you were just drawn to him and it was a very natural thing and then you have your wider group of friends so you have this really great way of really getting to know each but in this bigger group. So I think sometimes that, if I look back, that made it more normal even. It just felt completely natural.
EVA: That’s right. That’s right. This is a person who functions entirely independently and as a whole person. And so…
JS: …and he’s going to college just like I am, yeah. Absolutely.
EVA: The question of a relationship was not around disabled and nondisabled.
JS: In fact, when I first met Randy it was through a friend and he thought I was too quiet and I thought he was completely arrogant. (EJV laughs) And I tell that story because it wasn’t like, “Wow, he’s in a wheelchair.” I thought, “Wow, that guy is full of himself.” (EVA and JS laugh)
EVA: And I thought Chris was very overbearing. (EVA and JS laugh louder)
JS: And all of these things are true.
EVA: Exactly. Exactly. Yes, that’s exactly right and I think in filmic representations of disabled and nondisabled partnerships the disability is the big hurdle…
JS: Right. Oh exactly, exactly.
EVA: ...rather than any of the other dimensions of a relationship that can be complicated. So there were a few things that came to mind when thinking about the film and then how it might compare or not really fit with experience and one is just the idea that a nondisabled person getting involved with a disabled person is limiting their life somehow. (laughs) In my experience that has so not been the case. And partly because my partner is such a determined driven person. I think there are lots of places in my life I wouldn’t have gotten career-wise and in other kinds of situations if it wasn’t for his drive. And also we’ve just done the things I would have wanted to do like we were talking earlier about travel and we’ve traveled a lot and the kinds of traveling that I would have wanted to do anyway. So it hasn’t been this sort of limiting experience at all.
[Music transition - 38:17 - 38:25]
(Fades in with laughter)
JS: But you were saying that those two characters really don’t become real people but that’s also Hollywood.
EVA: Yes, that’s right. That’s true in every...that’s exactly right.
JS: I was reading about some of the outrage about this film thinking, “Well, how bad is this?” I mean it’s Hollywood. We don’t..we’re not getting everything we need from Hollywood, right?
JS: But then I thought further about this assisted suicide and then it becomes about life and death and we had talked a little about...Fortunately, Randy’s never been hospitalized. But I think if he was I think I would feel like I have to be there. Even though he can speak for himself, I would want to be there every minute to make sure nobody’s putting their own definition of well-being or quality of life in there.
EVA: Yeah, yeah. The question of value of a life.
JS: Yeah, definitely.
EVA: Yeah, I think I became more aware of that this Spring than I ever had been before and that was Chris’s first time being hospitalized as an adult, at least. And the first time he was so sick he couldn’t really speak for himself to describe how he was feeling or the process of the illness and I think that was the first time that I had really recognized the vulnerability of disabled people in those kinds of situations. And that there’s a lot of assessment and judgment just about the value of another person’s life and then if you consider the possibility that someone just is nonverbal that might not be able to speak or...that’s really haunting to me. I mean who, who are any of us to judge the value of the life of another person simply because they don’t have our same capacities?
JS: Right. So then if you have these media messages out there right confirming that yes, indeed, they do have less value I started to understand how deep this really went.
EVA: Especially someone as handsome and wealthy as the character…
JS: ...The ablebodied person playing the disabled person
EVA: Yeah, yeah, yeah… All of that (laughs)
JS: I think that’s a fair point that has to be made at some point. Wealthy disabled people live a very different life than anybody who doesn’t have the money they need. You know, we’re somewhere in the middle.
EVA: Yeah. Well see, this is one of the things I would only be able to truly answer this if I saw the film but from the reviews I read, I think she gives him his medication and that’s as much as she did. She’s beautiful. She is a whole person. Say she did have to help him use the bathroom. Would that be it? That would be it. Their relationship would be over right then and there. (EVA and JS laugh). I mean it didn’t go that way for us but, you know, it’s complicated. Or, would she be…there are other people who are really turned on by the idea of a disabled person. There are some disabled people who have no trouble finding lovers. Long-term relationship, a little bit different story, but there’s a kind of fetishizing of the different body as well which is a totally different question. It’s such a huge spectrum of interaction I just think…the story sort of talks about something that is actually pretty gritty but it does it in such an idealized way. I think that is problematic…
JS: It doesn’t actually get to the true grit of…
EVA: I don’t, I don’t think so. I don’t think it does.
JS: I don’t know. I applaud anybody who’s doing advocacy work for the disabled because I feel like Randy and I have our story and that’s as far as I can speak to.
EVA: That’s exactly right.
JS: And everybody else has their own. Like we were talking about the Smits and my side of the family have very healthy senses of humor (EVA laughs) and that has…and so do you and so does your side of the family and that has carried us so far in so many ways and so without that I’m not sure what this would look like.
EVA: I know. I know. Yeah, that’s essential otherwise, I think, otherwise you can’t adapt to the complications...
JS: And I would think that would be essential in any marriage, right? You have to adapt to so many things to begin with…
EVA: Absolutely. Absolutely.
JS: But, you know one of the other things we talked about is how our life just sort of rises and falls if we have good caregivers or not.
JS: And then as soon as I as the wife have to step in and fill that gap, things start to feel different and they get off balance pretty quickly.
EVA: Yeah. The stress level goes up right away. That does make a huge difference or if there’s a bad caregiver. (EVA laughs)
JS: Right. Yes, yes. We have really good caregivers right now and so just talking to you is feeling lighthearted. But I think if we didn’t have that right now that it might feel a little bit like…
EVA: Oh no, it’s painful. That is, that is exactly right. I think that’s one of the complications as well and that, too, no one…I don’t talk to people about it particularly but I think the extent to which Chris’s care or his needs can overtake my own needs. That can happen really quickly…
JS: Really quickly, yeah…
EVA: ..when we don’t have good carers. And then I find myself, you know. The way I think of it is he becomes less disabled because I’m in his life and I actually become kind of disabled. It’s not exactly the same thing but my life gets narrower and narrower in terms of what I’m able to do for myself because I’m increasing what he’s able to do for himself. And that is a complication. Yeah, a movie’s not going to show…I don’t know how, I don’t even know how to talk about that most of the time let alone think of how that could ever be represented in a way that would get at the fact that that’s only one small part of our relationship.
JS: Right, right.
EVA: It would become the whole, then you have your tragedy. (laughs)
JS: Yes…comedy tragedy Shakespeare, yes.
EVA: Because then the next week it gets better again. You hire a good one or they actually…yeah. Anyway…
JS: Yeah, I kind of, I kind of struggle with just wanting us to live our life. You know, years ago we had this discussion and Randy was talking about showing other people what it means to have a full abundant life as a disabled person. And I, I wasn’t so much there. I think you should just live your full abundant life. But, you know, is that enough? You want the story out there because there is this really full rich life going on and if everybody can’t see it and then you have these messages out there you’re never going to get that balance unless people are willing to share their stories.
EVA: Absolutely. I think that’s really true. I think that’s really true. Yeah, because I think… I wouldn’t have felt that way. I agree with you completely unless this film sort of put that light on it. Like the best she can do for him is help him get to the facility? (background acoustic guitar begins to play) What a sad sort of limited view of how two people can bless one another.
EVA: That’s it…..
[musical transition continues until 45:50]
CS: Some wisdom there from people living it with us. And it’s been an adventure for both couples and, yeah, it’s really cool to hear their voices. My love to them. Okay, to wrap things up we wanted to talk to a disabled filmmaker, someone who could offer us some ideas about alternatives to the formula being played out in Me Before You.
[Music transition - 46:16 - 46:21]
Christopher Smit = CS
Cheryl Green = CG
CS: Hi folks. On the line with Cheryl Green. Filmmaker, educator, advocate. The creator of Storyminders.com from Portland, Oregon. Cheryl, thanks for being with us.
CG: Yeah, thanks for having me on.
CS: This is wonderful, you know. We’re talking about this movie and you and I talked about it a couple weeks ago we were waiting for it to come and here it is and the shit has hit the proverbial fan (CS chuckles) and it’s just unbelievable the amount of attention this thing has gotten. You and I want to offer some alternatives, for crying out loud, because there’s more to live in the media world then...what do we say? “Media that doesn’t kill cripples.”
CG: That’s right. That’s right. And it’s quite a shitty fan at this point and I think, honestly, the fans are being pretty shitty too.
CS: Yeah that’s right.
CG: The fans of this movie...anytime a disabled person says, “Hey, I don’t like the message of this movie” they just get told they don’t know what they’re talking about.
CS: Yeah, that’s right. As if there’s no authority from the physical experiences that we have and what I love is the Live Boldly hashtag line on twitter. I don’t know if you’ve read that
CS: But Liz and I were talking; Liz Carr. And it’s a beautiful thing because you have all these people who are guffawing over these actors and all the wonderful things and how cute they are and then right in the middle of it are people like us “Stop launching this crap” and it’s amazing to see these voice but...so, you’re a media scholar, you’re an advocate, you’re an artist. You know, you run this awesome organization Storyminders and then your blog, which I really love, Who am I to stop it? It’s linked to your documentary but I was brought to your attention when I read Boo to me before you which you did. You know, you’ve done some thinking about this so you have a vested interest her. So what should we be watching instead of this drivle? What should we be looking at?
CG: Well, I think the first thing to consider is kind of abstract and conceptual. I think we should looking at things where disabled people are not encouraged to kill themselves.
CS: (laughs) Right.
CG: #1. So let’s find the non-suicide, non-cripple suicide media. And especially media that is made by nondisabled people that encourages people with disabilities to kill themselves. That would be the key thing that I’d be looking at if I had a menu in front of me, I just wouldn’t order that dish. But I have a lot of suggestions. Documentary tv, reality tv, fiction. For instance, A Christmas Carol. Hey that’s one we love to demonize and use Tiny Tim as a terrible example of media representation. But nobody tells him to kill himself so that’s an improvement, I’d say. So we could go back to the old times for that. Any documentary that is made by Niko von Glasow, top-notch. Just et in there. There’s another one I want to suggest. Another documentary, Murder Ball but I don’t want you to be confused by that title and, as a disabled person, you’re automatically confused by titles of movies (CS laughs) as we all are. But Murder Ball, surprisingly there’s no murder of wheelchair users in Murder Ball.
CS: No murder...
CG: Have you seen Murder Ball?
CS: I have. I love it. Yeah, it’s a great film. Yep.
CG: See, I’ve seen it twice which is very rare for me to do. I love that movie. In case anybody didn’t know about Murder Ball it’s about a form of super aggressive wheelchair basketball, wheelchair rugby and it’s super fabulous. Nobody’s encouraged to die there. Another one I might recommend, again a little bit ironic title for a disability rights documentary. It’s called Lives Worth Living. Ironic. (CS laughs) Let’s just start at square one. Lives-Worth-Living.
CS: That’s right. They’re not hiding anything in that title (laughs)
CG: No. There’s nothing to hide.
CS: That’s a great film. It does so much for...just to give people glimpses of real life not in this sort of romantic version of either too happy or too sad. It’s just real, yeah.
CG: Absolutely. And the fact that these are documentaries so they start hashtag #actuallydisabledpeople which is good to encourage non-disabled viewers that people with disabilities can star in films. I know it’s really a hard pill to swallow but it is true. You know, “Push Girls”. You brought that up the other day.
CS: Yeah. “Push Girls”…
CG: Hey...a bunch of wheelchair users who also are not encouraged to kill themselves.
CS: And they have a lot of sex which I think is always good. Of course, there’s all the trappings of reality television, right? There’s all this sort of, well, obviously it’s not real, a lot of these things are staged, etcetera etcetera. But, what I love about that one and the other one that’s really getting a lot of press is this “Born this Way” which is a reality television show about people living with down syndrome in LA. In California trying to make it all the various avenues of art or creatively or life in general. Yeah, there is a sort of contrived nature to these shows but in the end it’s real disabled people dealing with some real stuff and I love it. “Push Girls” sexualizes disability which is great and, of course, I think “Born this Way” humanizes Down syndrome in a way that I don’t think was ever...it was never done with Corky and “Life Goes On” in the 80s and that was terrible. But what this new show “Lady Dynamite” on Netflix? I know that both of us have been watching it a bit and there’s good stuff and bad stuff. What do you think about that show?
CG: I will say that it’s the kind of show that...I watched two episodes and I laughed out loud by myself. For me, laughter is very social so to laugh aloud when I’m alone is a big endorsement. It’s a shocking lack of...well, it’s a shocking number of white people and no people of color except for the one jilted boyfriend who shows up at one point. And it’s weird because she seems to have neighbors who are people of color but she has no friends who are people of color. But that part aside, it’s surreal and I love it when people with disabilities make surreal art because a lot of people think that all of our media has to be education. You know, statistics...how many people in this country have my disability and diagnosis and just educating about the features of a disability and she doesn’t do that. One thing that I really love about it is that she, Maria Bamford, is as much the butt of the joke as is her outpatient therapist in rehab. Her parents are the butt of the joke. So she’s not singled out in that way and it’s really fun.
CS: Yeah, it’s sort of an equalizer in that sense where the minority isn’t the butt of everything and there is this sort of activity of developing a character in a way that is trying to give us a kaleidoscopic view of what disability means; what disability feels like. So, Maria Bamford...she’s got, she deals with mental illness and is always been very upfront about that. What I love about the show is that in that surreal stuff that you’re talking about...what I love about it is that it feels to me like she’s offering a glimpse of what her thought process might be and does that in a way that is nonthreatening. Does that in a way that, to me, feels very expressionistic, that’s not a word, but very expression-filled and very artistic. And I love this idea that disabled people can be who they are and let that be the art. Isn’t that...that’s the goal. Right? That’s the goal.
CG: Absolutely. The other thing about that is she has this concept of the show and all the characters in the show are telling her, “No, don’t do this. Don’t put this one thing in your show” and she can still try to find a sneaky way around that and to me there’s this….it’s kind of an analogy for how….and it’s the same that’s happening for people who protest Me Before You. Non-disabled people swarm in and say, “No, no, no. You’re wrong.” We shouldn’t do it the way you want it done and she continues to assert herself in her agency and her desire through all of it. That’s another thing I enjoy about that show.
CS: It’s really fantastic. I hope people watch it. Let’s get back to this suicide thing.
CS: Here’s the deal. Suicide as you are obviously documenting in your movie, you’ve mentioned already that some people talk about it, it’s part of their decisions. I have issues with it because of how it’s enforced on people. But why don’t you just talk about that a little as we wrap up. The suicide, the role of suicide in the disabled life, and how that works with your work.
CG: Oh boy. That was a bunch of questions at once. Sorry. (laughs) Well, you know, my movie as I was thinking about Me Before You I was thinking about how much my documentary has mentions of suicide in it. #1 it’s actual disabled people talking about their own desires to commit suicide and their own attempts to commit suicide and they were unsuccessful attempts because they’re in the documentary. And, to me, that’s different. That’s them revealing their lived experience of acquiring disability from traumatic brain injury. The context around it is the loss of identity, a loss of skills, being abandoned by their friends, being isolated and humiliated and embarrassed. And those are things that are context around it. In the case of this fictionalized film, the context we’re given is from the non-disabled perspective, “Hey, I know what...Let’s have this really good looking guy who lives in a castle and has tons of money, let’s have him want to kill himself even though he gets a hot girlfriend too.” And it’s this idea that you see played out in people’s daily lives which is, “I would rather be dead than have to be in a wheelchair.” “Oh, I would kill myself if I were stuck like that.” “Oh, you’re so brave to want to live as a disabled person.” And there’s not enough balance and so that’s one of the big problems of it. I don’t have a hard...hmmm...let me just say this...I’m not a fan of assisted suicide the way it is because it is given as an option to people without a terminal illness because providers and lay people think that it would clearly be better to be dead than to be disabled. And I can’t support assisted suicide when it’s got that element to it and Jojo Moyes...her defense that “Well, no, this is a man being autonomous making a choice for himself.” (enunciates each word) Give-Me-A-Break. Not, not a reasonable defense again because there’s no balance. Until you also make a film where the disabled guy chooses something that’s not death.
CS: Yeah, yeah.
CG: Okay, then maybe I’ll take your defense.
CS: Yeah, that’s right. And I like…you know there have been other films that have quads in it that do it really well. I mean, I think that the French film Intouchables is one of those films that, you know, the guy is struggling. He can’t figure it out, he’s feeling down, he’s feeling down. He gets a friend who helps him to think out of it but then, in the end, he chooses to live. He chooses to love and be part of a community. So, okay, you put those two movies up together and some people will say, “Well, then, now you’ve got both versions.” But, I don’t think we need both version. I really don’t but...so, anyways some good ideas here for things to watch, for things to think about which, yeah, people aren’t asked to die. You know. Very good. Very good stuff. Cheryl, thanks for spending some time with us, man. It was great.
CS: Fantastic. We’ll have you on again and we’ll keep talking about media, okay.
CG: All right, thank you so much.
CS: Okay. See you soon.
[music transition - 59:39 - 59:52]
CS: Great to talk to Cheryl. I’m sure we’ll be talking to her again. Look. If you haven’t checked out her website, WhoAmIToStopIt.com, do so. It’s a smart blog, great podcast, really intelligent criticism from a very intelligent and funny person. So that’s our show. It’s your choice now. Do you want to go see this movie? Well, make up your mind or maybe let other people see it… Okay, thanks for listening. I want to thank our guests Liz Carr, Elizabeth Van Arragon, Jill Smit, and, of course, Cheryl Green. DIStopia’s a production of DisArt. For more information about DisArt and DisArt Festival, visit disartfestival.org. DIStopia’s produced by Liz Waid. Music is always from The New Midwest and David Molinari and we get help every week from DisArt’s Managing Director, Jill Vyn. I’m your host, Christopher Smit. Talk to you soon.
[Music plays louder and then fades into the background]
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