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In this episode we connect with Christine Fugate, producer and director of the documentary film Queen Moorea which follows Moorea Howson as she balances between special needs and “normal” teenager. The film explores what “normal” means spending six years with Moorea, born with an incurable genetic condition, and her family. Christine discusses the joys and challenges of shooting this movie, including the entire world shutting down during Covid19.
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Christine Fugate is an award-winning producer and director whose work has been screened in theaters and broadcast on channels around the world. She has produced pilots and programming for networks including Discovery, VH1, Disney, A&E, Sundance, Travel Channel, PBS, and HBO. She has also spent time interviewing celebrities such as Johnny Depp, Tom Hanks, Julie Andrews, and Anne Hathaway. For her unscripted work, she was named one of Showbiz's Top 100 Directors. She is currently an Assistant Professor in Documentary and Narrative Film at Chapman University.
"Everybody has a public persona. Even if you're not famous, you have a way that you present yourself to the world. Then you have a private persona that's inside your home. I found that actually, with families with children with disabilities or difficulties, there's another world going on there that I wanted to show, but it was going to take time for the family to trust me."
Engaging the World: Leading the Conversation on Health Equity is a series of interviews with activists, artists, educators, historians, and journalists about accessibility, cost, prejudice, and the human experience of healthcare in America.
Guest: Christine Fugate
Host: Jon-Barrett Ingels
Produced by Past Forward in partnership with Wilkinson College of Arts, Humanities, and Social Sciences at Chapman University.
[00:00:03] Christine Fugate: You can imagine, as a mom and a dad, you have your young adult go off to this job training, and then they come home depressed. It's like, "What did you do today?" "Well, I picked weeds and potted a few cacti." Then it wasn't even really even helping her move forward in any way. To me, that was a really big frustration. I wanted to end the movie with where she's in a good place, like she's at a nursing home working or in a hospital and the gift shop, but it's like wasn't going to happen.
[00:00:43] Host: Chapman University's Wilkinson College of Arts, Humanities and Social Sciences and Past Forward present, Engaging the World: Leading the Conversation on Health Equity. In this series, we explore the historical, cultural, social, and economic disparities that interfere with the access to health and healthcare, and examine how these challenges can exist in one of the most wealthy and technologically advanced nations in the world. We engage with journalists, historians, artists, activists, and educators to look at accessibility, cost, prejudice, and the human experience of healthcare in America as we look for the pathways to health equity.
In this episode, we connect with Christine Fugate, director and producer of the documentary Queen Moorea, which follows Moorea Howson who was born with Williams Syndrome, a rare and incurable genetic condition, as she moves from teenager into young adulthood. Here is Christine Fugate.
[00:01:47] Host: Let's start at the beginning. I'll have you tell us about the creation of this project. Was it an idea of creating something, a documentary about disabilities or was it the introduction of Moorea and wanting to tell her story specifically?
“Somehow she has captured the hearts of all of these people to win it for high school, to vote for her to be homecoming queen. She dropped to the ground as is in the film and kissed it.”
[00:02:10] Christine: I knew Moorea Howson actually through my daughter's soccer team. Her sister played on the same team. We would go to the games on Saturday. During part of that time, I was going through breast cancer and I was completely involved and dealing with that. Moorea would come up to me and talk to me. Everyone's so kind, but Moorea was always just talking to me, just, “how's it going?” regular person. We just became friends.
I guess maybe three years later, I was at the high school homecoming as my daughter was dancing there in Laguna Beach, and Moorea was nominated for homecoming queen. I was standing near her parents because I knew them from soccer, and all of a sudden, she wins. We're all crying and I turn around and the whole stadium is on their feet. This whole group of people are on their feet, clapping and crying. I was so overwhelmed by it and I thought, this woman's story deserves to be told.
I knew her through soccer and as a friend, but I didn't-- I was like, "Who is she?" Somehow she has captured the hearts of all of these people to win it for high school, to vote for her to be homecoming queen. She dropped to the ground as is in the film and kissed it. Sure enough, there were tons of people filming, and by the time I went to go get the footage from the high school, it somehow had all been erased. The only thing that we had was the mom's phone footage.
That was something that we struggled with in the film is how do we work with that? Anyway, I said to the mom, I said, "I want to make a film about her." That's how it started. It didn't really start-- That was my entree into the world of rare disease, into Williams Syndrome. I just started spending time with the family, talking to them about it. One of the big things of documentaries is gaining access and trust.
Everybody has a public persona. Even if you're not famous, you have a way that you present yourself to the world. Then you have a private persona that's inside your home. I found that actually, with families with children with disabilities or difficulties, there's another world going on there that I wanted to show, but it was going to take time for the family to trust me. I completely understand that.
I spent time with them and we talked about it, and why did I want to make the film. The family, especially the father, was very interested in the film because he wanted to give other families hope because as you can see through-- when she was born, the doctor said she's going to die, and handed them the baby. They did Moorea's baptism. They've been through a lot, the family, and he wanted to give people hope.
Then they finally agreed to the filming and that's when I started. I actually filmed for six years. It doesn't necessarily show because Moorea doesn't age very much. I was done with the film, with shooting, except for two scenes before COVID happened. She was working actually through this program at Saddleback. She was working at a nursing home and she really liked it. This seemed like this would be a good path for her. I was going to go film there. Then they shut down immediately. There was no filming.
Then I had to be careful filming. I couldn't film Moorea. She's immune compromised. I have a couple of weird photos where I'm all dressed up in all this hazmat gear and tried to tell the family, here's how you film da, da, da, but it didn't work. It didn't really work because I had a certain way that I was filming, and I did a lot of the filming myself, which I'm not a huge fan of, but I learned how to do when I made the movie The Girl Next Door. I went into an intimate setting and really, they only wanted one person and it was a woman.
On The Girl Next Door, I pulled out the manual. How do you operate this camera? I talked to my director of photography who said, "Hold the camera still and count to 10." Like 1, 2, 3 to 10. "Don't do any pans," she said, "because you will mess it up." I don't do pans. I was the one who shot a lot. Now, for the bigger events, I had other crew come in and stuff. Also, I didn't bring a lot of crew in the beginning because that's overwhelming to a family too. It also reminds them, you're being filmed.
[00:07:49] Host: I think it's important that we give a background. I had never heard of Williams Syndrome before watching your film. Were you familiar with it at all before doing your research and getting to know the Howson family?
[00:08:05] Christine: Well, I knew that Moorea had Williams Syndrome, and I knew that she had very high emotional intelligence, higher than a lot of people actually, but I didn't know that it was a deletion of chromosome 7. I didn't really know all of the things that were behind it. I didn't know that she was not going to be able to drive. When I met her, I believe she was 16, she didn't necessarily have the motor skills to drive. It does affect some physical aspects.
Also, even though she's incredibly smart and she can read and write, it does affect some intellectual-- I don't know what the right word is to say, but intellectual skills maybe. Her writing, it's hard for her to write. She reads well, but it's hard for her to write because of the motor skills. She was in an incredible program in the high school. Had a wonderful teacher that taught her a lot of things.
No, I was not familiar with Williams Syndrome. I was not familiar with muscular apraxia, which is what her best friend has, Arianna. I knew some about autism, which her boyfriend, Jordan, has. I really learned a lot about the rare disease world and living with Williams Syndrome and what that meant to Moorea and really what it meant to the family. I think I just had no idea the worry that it is of raising a child with a disability.
[00:09:50] Host: As a parent myself, it was challenging to watch the actual medical experiences that she had to go through of getting stents installed in her heart. Then watching the parents. That moment of having to separate as your child's crying, that broke my heart. There was this other element that your movie captured beautifully, and it's this dichotomy of Moorea's hopes and dreams and what she wants, and this challenging role her parents have to play of tempering expectations. That was the moment where, as a parent, I was like-- I can't even imagine. How do you say, "I don't know if that's possible?"
[00:10:51] Christine: How do you say, "You can't be a cardiologist"? That was a heartbreaking moment, honestly. Her teacher works with her, but as you see, when she goes to the state homecoming queen, she writes down on the form, "What do you want to do?" she said, "I want to be a cardiologist." The mom was like, "I'm not going to say no right there," but they did have talks with her, "You're going to need to probably pursue another pathway."
For me, that's why it was so heartbreaking when she's taken to a bookstore and the woman's teaching her how to sweep. Not teaching her, of course, she knew how to sweep and clean a window. She was capable of so much more, pulling weeds. I was really shocked about that. I do have to say that there was-- the movie did pivot. When I started filming, Betsy DeVos was in charge of the-- what was she? She was a Secretary of Education? I can't remember what Trump appointed her to. I think it was education.
[00:11:54] Host: That was it, the Secretary of Education.
[00:11:57] Christine: She was going to get rid of the American Disabilities Act in a way, and this access to education for children with disabilities. That really hit a strong chord with me. I was very like, "This is outrageous." If you look at the first trailer I made with the film, it actually has clips from CNN and working with that. Then when she made the decision to go after the Special Olympics, that was the end of her. Trump shut it down, and she faded into the background.
I was relieved that the ADA was going to stay in place. Then I thought I was going to try to use Moorea's story as a point of how important this access to education and healthcare is or was. Then when she faded, I thought, "Oh, what am I going to do? What is my story now?" I kept filming, but I had to think about, "What am I filming? What is the story?" Then the family would ask me sometimes, "What is the story? What are you going for here?"
In the middle, I was like, "Please just trust me. I've been doing this for a while, and I will find the story. Right now, I just need to be filming. I promise I will do my best to bring hope to other families, to show how it's done." Then Moorea's life-- I started to realize, it's like, I've raised two kids. I've had teenagers, and it's like, wow, the same problems. Your boyfriend breaks up with you, you're upset, you need a new boyfriend, go on a date with him. She doesn't necessarily have friend issues, but she sits around and talks with her friends. "Do you want to get married?"
[00:13:58] Host: Talk about crushes.
“...for me, the movie really came about to mean that the love of family and friends sustains us through difficult times.”
[00:14:00] Christine: Yes, crushes. It's just like girls. Then also, she was on this crazy homecoming queen journey, which actually before was more present in the film because she goes from local-- I didn't even know there's like-- she goes from local homecoming queen to state homecoming queen, and then she gets invited to this huge national homecoming queen, which I spent a lot of money filming.
It was one of the bowl games. I don't know if it was Fiesta Bowl. We filmed that, and we had that as a structure of the film, but it didn't really work. It didn't really work to have these pageants because I thought it was so fascinating to see her in this pageant world. I thought these questions of like, "What is beauty? What is intelligence? What do we recognize as that when we have Williams-- Moorea in these pageants."
When we went to Memphis for the Bowl, she's dead center in the-- what's it called? I can't think. When they did the parade. She was dead center of the float, waving to people. We have that as a structure, but it really wasn't quite working and hitting home to the theme that I eventually figured is that, for me, the movie really came about to mean that the love of family and friends sustains us through difficult times.
[00:15:40] Host: Well it also covers this--
[00:15:41] Christine: Sorry, that was a really long answer.
[00:15:42] Host: No. I love that you're giving us a view into what's not necessarily seen, and into your creative process, which is great. There's also this element of what is normal? What is normalcy? What is a normal teen? What is a normal young woman? Also, the pursuit of happiness in life. What is it that makes us happy? What is it that makes us feel fulfilled? What does that look like for Moorea or somebody with Williams Syndrome? I thought that that was a beautiful-- you capture these intimate moments with her and her boyfriend Jordan talking about their future and challenges that a future may face to people with disabilities.
[00:16:40] Christine: Yes, thank you. Our tagline that we have on T-shirts and stickers is, "Being normal isn't easy," and then we crossed out normal. Moorea said that to me. For me, I'm so glad that you got that because, for me, that's one of the major things is, what is normal? What is normal? I don't really know anymore. I don't even know how to answer that question.
[00:17:07] Host: Right. I was going to ask, and I don't know if you have this answer, but she would love-- and she expresses this in the movie, she wants to be happy. She wants to have a job where she's able to help people, and she wants to have a family.
[00:17:24] Christine: She doesn't want to have kids. She wants to have a husband and three cats.
[00:17:27] Host: Was that because her parents told her she probably shouldn't, or was that her understanding of that?
[00:17:36] Christine: I think it's a mixture of both. The thing is that because she's gone through medical procedures all of her life, she's very interested in medicine. Actually, at the school, I wasn't able to film it because she'd already done it, but she did the EMT training that they had, and she's done any kind of medical training. Actually, when they were up at Hood River one time, somebody passed out from the heat and stuff. She was the first one helping the person, and then they got 911. She had on the gloves, and she's helping them, and she knows all the firemen and were going to be-- She knows a lot of the police.
During the summer, she goes down and helps the lifeguards. Not swimming out in the water, but keeping an eye on people. She wants to help in that field. She has a very strong interest in medicine. She wants to make people happy too.
[00:18:40] Host: In a perfect world, how do you create that happiness, not just for her, but for other people who have Williams Syndrome or have other challenges, learning disabilities? If there is this dream of wanting a family, what does that look like in the perfect world? Not necessarily in our reality now, but what needs to be in place for them to have a "normal life"?
[00:19:11] Christine: To have a normal life, if she and Jordan got married, it was discussed that the families would help. They're not together right now. There's great love there, but I'm not-- they kind of grew apart a bit. They've gotten back together before, but I don't know if it'll happen again.
When it was being discussed, it was-- we could have them in an apartment, and each family would stop by and give support. Jordan is higher functioning than Moorea. The families felt that it would be all right. Also, Arianna, she has strengths that Moorea doesn't. Maria has strengths. Moorea gets Ariana out and doing things. There was also possibly talk of them living together as roommates.
There are places too that you can live where adults with disabilities live, but so far, the family hasn't found anything that they feel is right. It's very difficult. It's really challenging. Moorea does not want to have children because she does not want a child to go through what she went through. When maybe her parents had said, "There's a chance you could have a child with Williams Syndrome, this probably isn't a good idea." I never saw them say that to her.
I think where it really comes from Moorea, like she says in the movie, she doesn't want a child to be going to the doctor and having heart procedures. That I think makes her heart hurt to think of that. I think the thought of like, what does it mean to have a child and give birth and all that, I don't even think she's gotten that far with it. She doesn't want a child to go through that so that's why she wanted three cats. To her, that's a family and with her husband.
"You don't necessarily notice how much your kids grow every day. I have seen her mature more as adults do as you begin to realize that people die, life isn't always beautiful. I think she's begun to see the world outside of her own medical issues and the people that she's loved, and heartbreak is hard. She's had to learn how to cope with that."
[00:21:22] Host: In the years that you've known her, you said physically she's not necessarily growing, but how has she evolved and changed since you were first introduced?
[00:21:39] Christine: She has matured a lot, and I found that fascinating and I like to talk to her mom about it because sometimes I feel like the family doesn't necessarily see it as much. You don't necessarily notice how much your kids grow every day. I have seen her mature more as adults do as you begin to realize that people die, life isn't always beautiful. I think she's begun to see the world outside of her own medical issues and the people that she's loved, and heartbreak is hard. She's had to learn how to cope with that. Also, jobs, it's very clear now that she cannot be a doctor.
Maybe it's been said, but she's not in that program. She's not going to med school. She is in a college program, and right now, she's working with a job trainer. She's training for different jobs, trying to figure out what would be the best place for her. I would really love to see her work at Disneyland. I think she would be perfect, or possibly in a nursing home, possibly in a hospital setting.
She's very empathetic and she almost has a sixth sense. That was something that was really frustrating for me as a filmmaker is I couldn't capture that. I couldn't capture that sixth sense. I've had students make films about psychics or people. Somebody was going to do one on an animal psychic. You could say, "Well, this is what's wrong with your child or your pet." Then you could take it to a vet, and the vet would say-- but there was no way to really capture the sixth sense that Moorea had.
One day, I was filming this award ceremony that didn't end up in the film. Her family has a scholarship that they give every year in the high school. It's like the Mo gives back or something because she had such a wonderful experience there. Also, Moorea was receiving an award, but the school wouldn't tell me when. The award ceremony was like three hours. It's like the scholarship night.
I'd had a rough day. I always dress in black, pull my hair back and try to fade into wherever I'm filming. I just faded into the wall over on the left in this big auditorium. All of a sudden, Mo comes up to me and she touched my arm and she goes, "Are you doing okay?" She couldn't even really see my face. It wasn't like she could read my face because it was dark. She just always really had the sixth sense. She has it when she meets people. She knows where they are. I could never quite capture that.
“I filmed her with other people, and it was very interesting to see how long did it take for them to realize that she had a disability. She comes across as normal, and then she is very friendly. Then people get a little bit uncomfortable because as Americans, we're not used to over-friendly, very friendly.”
As a filmmaker, sometimes you have to let it go and say, "Well, I hope people realize that her spirit is empathetic," but it's hard. It was hard to capture. I filmed her with other people, and it was very interesting to see how long did it take for them to realize that she had a disability. She comes across as normal, and then she is very friendly. Then people get a little bit uncomfortable because as Americans, we're not used to over-friendly, very friendly.
I stood in line with her at many rides in Disneyland and she was talking to everybody in line. At first, it's like, fine, and then they're like, "Oh, she's very friendly." Then most people settle down and accommodate and talk to her. It was really interesting to watch that happen.
[00:25:45] Host: You mentioned a little bit about the complications of filming during COVID-19, but how did that social isolation affect Moorea?
[00:25:59] Christine: That's very hard on her, very hard. She is a very social person, and she is the definition of an extrovert who is energized by interactions with people. To not be able to interact with people was very difficult. She did do some Facetime, but she wasn't on Zoom. She wasn't having Zoom meetings or Zoom classes. I don't think that they even did any in Saddleback. She was at home a lot. I think that it put her into, I don't know clinically, but I would say I think it put her into a depression, like most of us.
It was especially very hard on her and on her family because she couldn't go out and I couldn't get in there to film. I couldn't even get in there to see her. We became close. We talked on the phone, but it was a really difficult time, really difficult.
[00:26:59] Host: Yes. You have her, I noticed, and this is where I was like, oh, this must have been shot during-- because when she's working at the farm, everyone's wearing masks. I was assuming that must have been right after everything opened up.
[00:27:14] Christine: This is another problem. When we talked about access to healthcare and education, a lot of the programs that are job training or for adults after they graduated from high school, they closed. Some of them lost their funding. There were not that many open after we were all allowed to go out into the public. The choices were few. The mom was able to find this program that was open. They did some job training. They would do little potted cactus succulents and go and sell them.
Then they worked in this garden, which was honestly such a shock for me when I heard we were going to film with a farm. I was like, "It's going to be lush and green. I heard there were going to be chickens there. Somebody said there's a peacock." I was like, "Okay, I'm going to be able to film her. It's going to be so interesting to have her in this beautiful lush garden and picking vegetables."
Then at the last minute, they're like, "Oh, we're filming in this other garden with barns." I was like, "Okay, well, there's going to be animals," because you have to figure out how are you going to film, and I didn't have access to go visit before. We show up and I'm like, "What is going on? [laughs] Where's the vegetable? Where's the lush garden that I'm going to film?" I will film this garden of this some kind of biblical metaphor I was going to try to create was not present at all.
I actually had somebody filming for me that day because I thought it was going to be this incredible garden, and I was like, "I want someone who can capture the lushness." We got there and there's just these little plants and they give them these buckets and said, "Go and pull out some weeds." I was like, oh, no. I didn't even know. I just said to the cameraman, "I guess go get some shots, make sure you get the hand from the weed into the bucket." There was actually some other adults with disabilities. It was very strange, the interaction, and it really was suppressing. [chuckles]
"I wanted to end the movie where she's in a good place. She's at a nursing home working or in a hospital, in the gift shop, but it wasn't going to happen. Maybe it's going to happen now, but I finished the movie a year ago and some."
[00:29:46] Host: It reflected in Moorea's whole energy of, this is the job.
[00:29:56] Christine: You can imagine as a mom and a dad, you have your young adult go off to this job training. Then they come home depressed, and it's like, "What did you do today?" "Well, I picked weeds and potted a few cacti." It wasn't even really even helping her move forward in any way. To me, that was a really big frustration.
I wanted to end the movie where she's in a good place. She's at a nursing home working or in a hospital, in the gift shop, but it wasn't going to happen. Maybe it's going to happen now, but I finished the movie a year ago and some. We were just ending our festival circuit now. That wasn't going to be the ending. I was like, "I can't keep filming for another five years to get this ending because I don't know if it's going to happen."
[00:30:55] Host: Right. Then you have her dad saying that. “We don't know what the ending looks like.”
[00:31:03] Christine: I've never made a movie like that where I didn't know the ending.
[00:31:06] Host: Is there a thought to revisit? Is there like 10 years down the line to see what a 30-year-old Maria looks like, what an adult entering middle age would look like with Williams Syndrome?
[00:31:25] Christine: Possibly. Yes, possibly. It would be interesting to do. I followed Stacy Baker Valentine as she went from being an Oklahoma housewife to an adult film star. Then after the movie came out, she actually retired from the business. People were like, "Well, you should go film her. What did she do afterwards, and how did that happen?" She married a penthouse executive and she moved to Sacramento. I think she's back to being a housewife.
I don't know. It's just going back doesn't always seem to work, but in this film, there wasn't an ending. I would like to put a coda on it 10 years later, and actually show her at her job. Yes, if she gets to a good place, I would be interested in doing that.
[00:32:28] Host: If you would like to continue the conversation, visit chapman.edu/wilkinson to learn more. To access recommended books from our guests for further learning, and for more socially conscious content, visit us at pastforward.org, or follow us at Apple, Spotify, or wherever you podcast.
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