Director's Cut

>> Her pregnancy was absolutely normal, no problems. The delivery was absolutely normal. The doctor said she's a fine, healthy little girl. They never said anything. The nurses never said anything. >> Devastated when they found out. I know my dad was. My mom said she knew immediately after Mary was born that there was a problem, she just didn't know what it was. My dad kept out hope that everything was perfect, because it would be. His other two children were, so why wouldn't Mary be? >> Hi, and welcome to Director's Cut. I'm Charles Monroe-Kane. That was a clip from the documentary "This Is My Sister." The documentary chronicles the life of a woman with Down Syndrome named Mary, and how her life connects with her sisters. We're joined today by Frank Caruso. He wrote, directed, produced, edited and even did the camera work for the film. Thank you very much for joining us today. >> Thanks for having me, Charles. >> I was curious watching this film. This isn't your sister. Mary's not your sister. Why did you make this film? >> Well, two years ago, my daughter was on her way to college, and I had kept journals of both my daughters. My eldest was on her way, so I sat her down and started reading my journal, things that she had said and done through the years. We got back down to the ninth grade, and on that particular day, I was heading off, I was doing a segment for Oregon Cable Access. I was in a school. And that was a day where they celebrate Laura Ingalls Wilder Day. So they're making pancakes, maple syrup. In this particular room, they were quilting. I went in there to film the quilting. There were four women sitting. The teacher introduced all of them but one. That one was Mary. Immediately, a woman stood and said, "And this is my sister Mary, and she'll be joining us today." So that's how it started. I recognized that Kathy, who stood, Mary's sister-- They're in their 50s now-- She stood, protecting her at that point, and I thought there's a story here. I wanted to do a story on sisters, because I see the relationship between my two daughters. That was the impetus for starting the film. >> Of course, the film is about Mary who has Down Syndrome. >> It is about Mary. >> But it's also about two other people, Kathy and Nora, who are Mary's sisters. Can you tell me about them? >> Yeah, you know, and it really harkens back to the parents, Mr. and Mrs. Fischer. Kathy and Nora are the-- Kathy is the eldest of the sisters. Nora is the second eldest, and then Mary. They have taken care of Mary through the years, after the parents have passed. Kathy and Nora have done everything possible to make Mary's life as comfortable and enjoyable as it can be. Mary lives on her own, with a roommate, but she is on her own, basically. She works two jobs. >> Why do you think the sisters let you make this film? Why did they let you? It seems very intimate. >> Well, back to the journal, I had an asterisk in the journal, and I had that day when I went in, and I had the names of the people that were quilting. So I called them. I met with them the next day and I told them what had happened in school. They didn't even recall it. But I said I want to do a story on sisters. I think hearing our conversation over lunch, which was over an hour, they entrusted me with their story. They wanted to tell the story. They had never told it before. They're very guarded, as you will see in the film, and very protective of Mary, and their parents who are no longer with us, and their story. >> We're going to see a clip from your film, and we're going to come back and talk more about this. This is a great clip, which kind of takes us back to when Mary was born. >> My mother said she's quite sure that her doctor knew, but felt bad and didn't know how to tell her until they kept going to other doctors to get a diagnosis. >> Her doctor, never did he give any indication of what was wrong. In fact, he almost led her to believe it probably was a muscle problem, perhaps a spinal problem. My father would go like, no, don't say anything's wrong with her. We're going to take care of it. >> Did my parents express fears for Mary's future? Yes. And probably all of her life. In 1957, children with a disability were taken to an institution. Your family doctor says do this, because you'll harm the rest of the family. This child will never, I mean, they were told, she will never know you. She'll never walk. She'll never talk. She'll never have feelings. She'll never be anything more than a vegetable. You know, why put any effort into her? You have two children. Don't worry about it. And they considered that point of view, because they didn't know anything else. So, I know they looked into places. They were horrified by some. Some were, oh, man, in 1957, the institutions were ugly. They couldn't do that. If she had been institutionalized, she'd be different. But if you put a normal person, as a baby, in an institution, I don't think that they could come out and be okay, either. It's just if you don't have love and support, you can't become the person who you were meant to be. >> A powerful clip from "This Is My Sister." You know, when I look at that clip, I think-- You were talking about you have two daughters, and that's one of the reasons you made this film. Can you imagine? You must have thought about it while making this film. >> I thought about it deeply at times, sitting behind the camera. You know, I'm recording history, someone's personal history, and they've invited me into that world. When I think of the father, because I'm a father. And Mr. Fischer finding out for sure when he came to Madison that Mary had Down Syndrome, when he cried, and he did cry, he cried not because Mary had Down Syndrome, necessarily. But I felt that he cried because he knew how cruel the world was in 1957. >> Sure. >> We've come a long way since then, accepting of others. But in 1957, it was a cruel world out there for people with disabilities. >> I was curious. We're going to see some more clips of Mary. But what was it like for you, speaking of intimacy, and you had the camera, what was it like to interview Mary? What was it like the first time you sat down with her? >> The very first time, when I was alone with her, she was very relaxed with me. By that time, I had come in, and you know, she's really living in the 1950s, Rock Hudson, Doris Day musicals. So we would sing a little bit and start to just talk. She was really becoming relaxed with me. I have a closeness with Mary, you know, that I wouldn't have hadn't done this. >> Let me ask you a filmmaker question, because I think it's important, or interesting for people who may be interested in this. You don't just show up with a camera in front of your face when you meet an adult woman with Down Syndrome. You must have met with her many times alone first. >> Yeah, I brought the equipment, of course, because you never know when you want to start. But we sat and talked. We just talked, just like we're doing here, just Mary, tell me about your life. Why do you dress like this? Mary always wears dresses, rings, jewelry. What are your dreams? What are your hopes? What do you like about your work? Who are your friends? What do you like to eat? I love eating. We talked about food a lot. Mary loves eating. So, it just started moving like that. We became friends, so she was comfortable and just started talking about her life. >> Then you introduced the camera? >> Then I introduced the camera. She was fascinated by it, really, because my camera, I can flip it and she can see herself. She really never saw herself. She'd seen herself in photographs, but she's moving, her audio's there. So she could see herself. Actually, there's probably clips where she's leaning in and looking into the camera and seeing herself, her beautiful luminous face. So that was fascinating to her. >> I can imagine. We're going to see another clip. This one is actually one of my favorite ones, because it really shows intimacy. This is Mary's schedule. Can you set this up for us a little bit? >> I believe this is the morning, coming in in the morning. I came in that morning, I wanted to get there early. The night before, I said, Mary, I'm just going to come in long before you wake up, and sit here until you're ready to wake up. We'll see her, she uses a CPAP machine, because she has sleep apnea. She actually, Charles, loves to have that. It makes her feel special, that it's something unique. Her sisters don't have it. She has it. She uses it. It helps her breathe. It helps her sleep. She actually can't sleep without it, just the sound of it relaxes her, which is odd, because it makes a heck of a lot of noise. So the morning, I said, Mary, I'm going to get you waking up, and this is it, let's see your day. >> Let's see your day. It's interesting. We're going to share that clip. Then we'll come back and talk a little bit more about Mary. Here's another clip from "This Is My Sister."

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>> Good morning! Good morning, rise and shine. Hi, Mary. Did you sleep good last night? >> Mary has sleep apnea and uses a CPAP machine to help her get quality sleep. >> That feels good, doesn't it? Whatcha gonna do today? >> Today is to be with Kathy. >> I have to keep telling myself it's Mary's life. It's not a sad life. You look at Mary, and she's full of joy. She's full of life. She's full of energy. She's always talking about all the friends in her life, and who she's mad at. She receives 24/7 support. She's at work Monday through Friday,

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30. Other than that, when she's at home, she has somebody with her. The reason for that is not that she would do anything destructive, but she would not know how to take care of herself if an emergency arose. So, her life, to her, is full. In her eyes, she's beautiful. No one's going to dispute it, because she is beautiful. >> That was a very intimate clip. I found it very intimate that they would let you just come in and film her. They must have really trusted you. >> They did trust me. And it was intimate coming in and seeing her, you know, in her pajamas. >> Wow. They're guarded people from a small town in America, in Wisconsin. I would assume their ideas of a filmmaker could be exploitive, invasive. How did you, not only achieve that, but then you must have felt some responsibility, right? >> A great responsibility. At times, you know, I felt like a guard, a guardian to Mary, especially as the film went on and I got to know Mary more, got to know the sisters more. You know, they have their first family, which is Mary and Mr. and Mrs. Fischer, and Nora, and then their families. A lot of time goes into Mary. A lot of time goes into making her life better, taking care of her, being there emotionally, physically, moving her, you know, the things that go on in normal life with "normal people." >> There's this powerful moment in the film. It's powerful in its simplicity. You are alone with Mary in her bedroom, and she is showing you her jewelry. She's a woman who wears a lot of jewelry. >> Yes. >> A lot of necklaces, and bracelets, and rings, and vests, and dresses. She's giving you a tour of her clothing, of her stuff, which I think probably, from the way she was telling it, no one has ever asked her before. Will you take us to that moment, what it was like to be alone with her, getting a tour. >> Yeah, I went in. She will not wear pants unless she absolutely has to. And only in one of her jobs she has to wear pants. Otherwise, she's in a dress. She's in a nice shirt. She loves these vests that she has. I think she has like 37 vests. She wears one every day. It may be two every day. She wears a ring on every finger. She wears two or three necklaces. It really brings her back to a time when life was more glamorous, when women dressed. She goes back to that time. She feels beautiful, as her sister said, because she is beautiful. It was a touching moment for me. This clip that we'll see gets me, because I was with her. I was in her room. This is an adult woman with Down Syndrome. She's showing me her beautiful wardrobe, and she's proud of it. It was a very moving moment for me. >> How do you--? You have a beautiful moment. You have the camera. You capture it. You're in the editing room, playing that music, the narration. You have a lot of tools. How do you not go saccharin, not go over emotional, and also not be exploitive? How do you do that without self-editing yourself, you know, and ruin what you're trying to do? >> Yeah, you know, with this, Charles, I tried to be as careful as possible, not to over dramatize Mary's life, to show it, like I said, recording history. I wanted to take what came in the camera when that shutter opened and put it on the editor. Of course, I manipulated with some black and white footage, to go back in time, to show when they were small, adding music to the piece. People are very used to that, but I was very sensitive not to over dramatize her life. She has an everyday life. She gets up every day, goes to work every day, works two jobs. It is an emotional time, having a child that has Down Syndrome. I'm a father, so I'm thinking of my daughters and the perils they go through, just as normal kids. I'm constantly thinking of Mr. and Mrs. Fischer, and handing the ball to Kathy and Nora, and to their extended family. >> We're going to show another clip from the film. This one, I found very powerful. You were talking about in the 1950s, how cruel people could be. People are still cruel today. >> They are cruel today. >> We'll let this clip speak for itself. Let's roll that clip. >> What TV show did you watch when you danced, do you remember? >> He whirled me around. >> He whirled you around? >> Mm-hmm. >> What TV show were we watching when we danced? >> Lawrence Welk. >> Lawrence Welk, every Saturday night. >> Every Saturday night. >> What would we do on Saturday night, do you remember? >> I liked to polka. >> You liked to polka with dad? >> Yeah, and waltzes. >> And do waltzes with dad. >> Yeah. >> Did dad teach you to play some games? >> We played games. >> Do you remember what he built for you in the basement? >> Jumping. >> Yep, a trampoline for jumping. >> A hula hoop. >> And a hula hoop. >> Mm-hmm. >> Sometimes when we're out together, like at the zoo, at a store, and you'll say to me, "How come he's staring at me?" >> Yeah. >> How does that make you feel, when people look at you? >> I feel sad. >> You feel sad? Do you think they're looking at you because they don't like you? Or why do you think they're staring at you? >> They like to stare at Connie. >> They like to stare at Connie, too, you're roommate? >> Yeah. >> Why do you think that is? >> I don't know. >> But it makes you feel sad? >> Well, I love Connie a lot. >> You don't think they're people that like you? >> I don't think so. >> You don't think they like you? Do you think they're afraid of you? >> I'm afraid. >> You're afraid, huh? Do you think they're going to say something mean to you? >> It is a cruel world, sometimes. You were saying while we were watching that clip that she doesn't want to talk about that. >> She wouldn't talk about anything negative. Mary would not broach that subject, that people are cruel. You know, she loves babies. She'll go up to babies. Some mothers are, you know, you see someone like Mary, because people don't know any better or have any knowledge of people with Down Syndrome or a disability, and they're afraid, you know, instead of inviting them. Mary's a very gentle, kind person. >> We're afraid of what we don't know. >> Right. >> It's interesting. There's this moment in the film, I thought, a really intense moment where Kathy, one of Mary's sisters, states, I hope she dies before we do, you know, she hopes she dies before her sisters, her and Nora. That was her great wish for her, I hope she dies before we do. When you're a filmmaker, and the way she says it you can tell she was about to break down. >> They did. >> And they did afterwards. What do you do? Do you keep filming? Do you shut the camera off and give her a hug? I'm just curious, what do you do? >> I never shut it off, Charles, I never shut it off, because you never know what you're going to get. I kept it rolling. I asked her at the end, do you want me to air this. And she goes, this is the way it is. This is the way it is. Mr. and Mrs. Fischer wanted Mary to pass before they did, and that wasn't going to happen. Typically, people with Down Syndrome do die earlier because of their cell tissue. That's even heart wrenching, again, as a human, but as a father, to think that I would want to wish my daughter's death before mine. >> Yeah, but she didn't mean it in a cruel way. >> No, not in a cruel way. >> It would be a great thing for her if that would happen. >> It would be a great thing. Again, and maybe too much, the protection, the overbearingness to protect your child, as every parent does. But they more so, because again, 1957 and in the 1960s, the world's a cruel place to live in, and you want to protect them. Maybe a little too much, as we see 30 years later in the great film "Monica & David," where Monica and David were assimilated into society and they have a life. Not that Mary doesn't have a life, but maybe in hindsight for me as a filmmaker, it could've been different. >> There's a flip side of intimacy. You have this piece of intimacy, where you have someone breaking down and saying they wish that this woman passes away. And then the other flip side, there's an amazing moment where you must be in a small car, and Mary is singing, which she does every day. >> Every day. >> An Andy Williams song. You must have been right in her face with the camera. >> Right in the back seat. >> Tell me how that happened. >> At the end of the day, you know, I spent several days/weeks with them. But on this day, at the end of the day, this was the first day I was with them toward the end of the day. So at a very particular spot, Mr. William's song is about 2-1/2 minutes, so they play it at that spot. When they pull up to the door, it ends. She's been doing this for nearly all her adult life. >> Oh, the joy in that car! And you're right in there, you can tell. It's really awesome. >> She's singing it. She was a little apprehensive, because that was actually the first time she had sung aloud to me, in front of me. >> She kicked it. >> With the camera rolling, that is. >> We're going to show another clip. This one's very intense. I think this one goes to an issue that until I heard about it, I didn't even consider it. This is Mary when she becomes a woman, which for someone with Down Syndrome, happens later in life, hitting puberty. We're going to play this clip and talk a little bit more about that. Here's another clip from "This Is My Sister." >> My parents' expectation for Mary and love was something that horrified them. They were so fearful that she would be taken advantage of. They were so fearful when she started menstruating and becoming able to have children. There came a point in Mary's life, when she was living with them, when I believe those hormonal urges were coming to the surface. She wanted to leave home. She wanted to explore life. She wanted to have a family. She wanted to have a baby. They had no place to turn. They had only themselves to turn to, to make decisions for Mary's life. And as you can well imagine, they had no clue what to do with this, other than to be terrified and to watch her even more carefully. >> I'm sure that Mary probably feels some sadness about it, because she would see Kathy get married. I got married. Cousins got married. I mean, that's what you did. She knew that that's what you did. She would want that for herself, too. But we'd kind of dismiss her with, you have to take care of mom and dad. So, you know, there was always someone in the family grouping that had never gotten married, and that would stay with their parents. She kind of accepted that rationale that, yeah, mom and dad needed her, so she would sacrifice her own life to take care of them. >> Sacrificing her life for her mother and father. You were saying we lie to each other sometimes. >> We have to. >> What happened? Mary doesn't have children, did not get married. What decisions did they make? >> The parents made a big decision. When Mary was menstruating, where she could become pregnant, they decided to have her have a hysterectomy, and remove all doubt of her ever having children. >> Does Mary understand that? >> No, not that way. She does understand that after the hysterectomy, she knew she wasn't ever going to have children. Then her responsibilities in life, her personal responsibilities for herself became different. She still loves children, loves the idea of marriage. >> Right. >> You know, going back again through movies. You know, she knows marriage is romantic, beautiful. >> Right, watching 1950s movies. >> You get an idea, not a reality. Again, a decision that I would not want to make, and I wouldn't feel good about as a parent, making that decision, either way. It's a lose-lose decision, Charles. >> Yeah, you don't want those in life, the lose-lose decisions. >> It is. >> There's a moment, I can imagine, with you. I'm just picturing it right now. You're in your car and you're driving to their town. You have the final film with some of this really intense stuff in it, the way you've edited it, and you're going to show them the film, the three sisters. Maybe not at the same time. >> At the same time, we didn't. >> What was it like? >> With Kathy over my shoulder, showing her the clips of the film that I put together, kind of sitting there, wondering, is this okay. First off, even though everything was open, and this is what it was. It was very moving for them. It was very moving. They actually had their friends, the people who were in the quilting group come over and watch it. The responses from not just the family, but friends, they were very moved and touched, and amazed that they were able to tell their story with such clarity. >> Right. >> And do it. Very brave. They were very brave people. >> What did Mary think when she saw it? >> She loved it, seeing herself. She looks at things in a very idealistic way. So, the seriousness of the content behind there, and we know what that is, the hysterectomy, her dying before the parents and the sisters, those are kind of away. When she sees herself and sees her dressed in the beautiful clothes and the color, she loves it. >> We're going to have to wrap up, but I'm curious, you know, just in like one sentence, you personally. When you watched it for the first time alone, and knew it was done, what did you take away? >> I did watch it alone. I had to watch it alone. >> I would, too. >> I got it all together, and got it up there. And to me, Charles, if you're really paying attention as a filmmaker and you're looking at something, it has to affect you. Even as a human. But as a filmmaker, you're capturing someone's life, you're telling that story. It made me think about love, and it made me think that love is the great love of their life. Without it, the universe is an empty place. >> Wow, what a beautiful thing to learn. They did you a favor, as well. >> They did me a tremendous favor. >> Thank you very much for joining us today. We really appreciate it. It was a great film. >> Thanks, Charles. >> Thank you all for watching Director's Cut today. For more information on this film, "This Is My Sister," please go to www.wpt.org and click on Director's Cut. I'm your host, Charles Monroe-Kane. For absolutely everyone here at Director's Cut, thank you very much for joining us today. Check the gate. You're going to see Mary in pants. Mary never wears pants. She wears rings on every finger. She wears at least three bracelets and three necklaces. at all times. She is the height of fashion. And she's never dressed unless she has on a vest.