How To Dance In OhioHow To Dance In Ohio

Interview with Alexandra Shiva

  • What made you want to tell this story?

  • I have a friend with a 16-year-old daughter who I've known since she was 4. She's on the autism spectrum and happens to be nonverbal. It's a very different story, but I was interested in her coming of age. There tends to be a focus on little kids on the spectrum and on diagnosis, cause and cure. I was like, "What's happening to the people who are growing up? Where are they going to live and work?" I wanted to explore that process.

  • How did you meet Dr. Amigo?

  • I was at a conference in Newark and met a woman on the autism spectrum who said, "You have to come meet my doctor in Columbus, Ohio." I went to meet Dr. Amigo and to see a play they were doing, 'Law and Order: Fairy Tale Unit.' It was amazing.

    Dr. Amigo was very excited about the upcoming prom and told me they were spending three months in group therapy preparing for it. That's where it really crystalized; I thought that was the perfect way to tell the story because it's so relatable. Everyone knows what it's like to be scared of a dance or a date.

  • How did you select the three young women who are your focus?

  • First, we had to work with Dr. Amigo to make sure we didn't impact treatment negatively. He talked to his clients about who wanted to participate and there were different levels; people who were fine in groups, people who wanted to be interviewed, people who said, "You could come home with us," and people who didn't want to be in it at all.

    During filming, we followed four boys as well. Eventually we decided the strongest way to tell the story with through these three girls of different ages. Marideth represented being in high school. Caroline is just entering college. Jessica is trying to
    enter the workforce. It was a good cross-section of the group.

  • How many people did you interview?

  • It was very important to me that everyone who wanted to be interviewed got represented in some way. So much of why I wanted to make the movie was this idea of these people speaking for themselves; a lot of times you have
    the doctor or parents speak. The strength for me was that they could talk about their own experience

  • What was challenging and rewarding for you about interviewing this
    group?

  • Marideth was the most challenging and the most rewarding for me. She was incredible. One of the things that Dr. Amigo always said was that anytime anyone wanted to turn the camera off, they should just say it. She did that a lot.

    Before she would do an interview, she would insist on having coffee together. She would just rattle off questions: "Where have you been in the world? Do you know bulldogs have C-sections? Do you think babies are ugly?" My personal favorite: "Do
    jowls run in your family?"

    There's no filter and there's something so refreshing about being with people who are honest all the time. It was a really fascinating, fantastic experience every day.

  • What surprised you about working with the group?

  • People say, "It doesn't seem like they're affected by the camera." There are a couple of reasons for that. First, it was a much more collaborative process than I've ever had making a documentary. It started with a town hall
    meeting where everyone asked questions. Everything was up for discussion. The whole first week, my team would sit in a room with four to five clients at a time and we would all explain what we do. They would touch the camera and inspect it. I
    think they got comfortable.

    The second piece is that I don't think the presence of the camera added the same kind of self-consciousness that it would add for someone not on the spectrum. The presence of another person already brings that anxiety; they were more aware of us than the camera. In an interesting way, the staff was more self-conscious than the clients.

  • How did you balance the girls' victories and struggles?

  • We started the edit with the dance. That moment when Jessica was crowned, we were all sobbing. We wanted you to feel as connected to Jessica as we were and to distill the experience with all of its ups and downs so that it culminated -- as it did for us and them -- with the dance.

  • What was the mood like at the dance?

  • The staff was quite nervous because there was a walkthrough the week before and only three people showed up. I think Dr. Amigo was concerned that was what the dance was going to look like. The day of the dance, everybody arrived
    45 minutes early with their parents. Only Marideth's mom was allowed to come in because she was helping as a volunteer. All the other parents had to leave, which was fantastic for everybody.

    Some people had a hard time. There were definitely two or three who had meltdowns and had to go outside or into the quiet room. But everyone interacted and it was an achievement for everybody in their own way. It was really important for us that by the time you get to that dance, you realize that for Marideth to walk up and say "hi," means something.

  • Have you kept in touch with the three girls?

  • I've been texting with them all morning! They're great. We had the Columbus premiere two weeks ago and they were so incredible and happy. All of their friends and family came. Marideth even said, "I've come so far from back then." Caroline and Jessica got up on a panel and did a Q&A.

    Dr. Amigo always maintained that he was going to use the presence of the camera as a therapeutic tool. The actual film has created a sense of pride and self-esteem for them. In the same way the dance did, the film is just further giving them a sense of self.