When Diana Braun and Kathy Conour met 38 years ago in a foster home, they never imagined their lives would intertwine and later be documented on film. Now, living in their own home in Springfield, IL, Diana is not only Kathy’s personal assistant, but also her companion and lifelong friend.
Here, they answer questions about their lives and their experiences in the making of the short documentary, Body & Soul: Diana & Kathy. Diana answers some questions for herself, and others as Kathy’s interpreter. Filmmaker, Alice Elliott, also weighs in. Her previous doc, The Collector of Bedford Street was nominated for a 2002 Academy Award. Simone Pero, Elliott’s producer, conducts the interview.
Simone: When did you first become activists?
Diana: In 1980. Our landlord at the time did not want to rent apartments to people with disabilities. We knew he was playing games with us. So, we called a lawyer to help us stop the discrimination. Kathy was lucky to have her parents, a good lawyer and money. This experience inspired us to keep fighting for the rights of people with disabilities. Later, Kathy worked as the advocacy coordinator at the Center for Independent Living, writing articles and networking.
Simone: In the documentary, audiences see you both at political rallies as well as when you are lobbying your legislators. Do you think conditions are improving for people with disabilities in this country?
Diana & Kathy: We have more rights for people with disabilities today because of the ADA. So, they can now get around on buses. We are also glad about a 1999 Supreme Court decision, which allowed people with disabilities to live in the least restrictive environment. But, there is still a long way to go.
Simone: What are the big issues today facing people with disabilities?
Diana & Kathy: We want more jobs for people with disabilities. We want better communities, better housing and a better life. Money and funding should support a person’s choice of where and how they want to live.
Simone: What advice do you have for others who want to live outside institutions?
Diana & Kathy: They should make sure they get backup up Personal Assistants (PAs). PAs don’t make much money. We need to pay them. It is not easy to find good PAs. The main ingredient is more support.
Simone: How did you meet Alice?
Diana & Kathy: At a Columbus, OH, screening of her film, The Collector of Bedford Street.
Diana: After the film was over, Kathy poked me and asked me to tell her about Alice. We waited outside until she came out. After that, Kathy kept emailing her.
Simone: What has it been like for you to have someone filming you?
Diana & Kathy: It felt good. We want people to see us, so they can have a similar, good life. We want them to see that we have the same experiences they do. The more we do that the better.
Diana: Sometimes it was hard to be filmed. But we kept going.
Simone: Does anything surprise you when you attend screenings of the film?
Diana: A lot of people have tears come out of their eyes. Kathy didn’t expect a great response from audiences, but I expected a great response.
Simone: What have you been doing with the film?
Diana: We are traveling with it. Recently, we went to Seattle and Atlanta to accept awards for the film. Next summer, we’re going to Kankakee, IL, to show the film and talk about it afterwards.
Simone: Kathy, how have you been feeling lately?
Kathy: I’m feeling better now, but I’m old. I’m getting a new chair soon and I hope it will be better. In this one, my hip moves and the seat doesn’t mold to me. I also have to pay a private nurse now. It’s not right I have to pay. Medicare doesn’t like to buy new chairs. They want people to use manual wheelchairs, but it doesn’t make sense for people who can’t use their limbs. Medicare rules need to change.
Simone: Alice, what are your hopes for the film?
Alice: I want everyone in the country to see this film, because many people are uninformed about the simple challenges people with disabilities face every day. Having the film shown on public TV will be a step towards achieving our goal. This is an exciting time because it’s an election year. Lobbying and advocacy can make a real difference. We believe the lobbying Diana and Kathy did in the film has influenced Senator Obama’s policy on employment and disability. This is democracy in action. His campaign recently came out with a statement that he wants to change the Medicare laws so people don’t lose their benefits if they leave their homes. The current law states that people who receive medicare home health care are only allowed to go to the doctor, to church and to the beauty or barbershop.
As legislators become more informed, we will see large, unsafe institutions close and people become more integrated into their communities. Kathy McGinley from the Disability Law Center says that people want the right to live, work and play in their own communities. I hope that’s what Body & Soul: Diana & Kathy will show. I hope this film will help breakdown barriers to full participation. We want every building, bus, plane and transportation vehicle accessible for all people.
Simone: Alice, what about Diana and Kathy’s story did you find compelling?
Alice: The way Diana and Kathy go after something they want motivates me to do the same. The fact that they journeyed to Washington DC and spoke up for their rights, made me committed to telling their story in the most honest way I could. After they asked me to make a documentary about them, they got into my brain and my heart; they changed my life.
Simone: Where are you headed with the film?
Alice: We plan to screen it before Congress in 2008 and to go to states where there is a chance to influence legislation and change policy. There are disability awareness and history of disability rights curricula being written, and we are hoping to make Body & Soul; Diana & Kathy a part of that national curriculum. Their lives span the Disability Rights movement from living in institutions to living independently. For us, this is part of a multi-year public outreach and advocacy plan.
Simone: Were there challenges with the making of Body & Soul: Diana & Kathy?
Alice: I was concerned about Kathy’s health, and never knew how she would feel when I arrived to tape. Sometimes we would all go off to the hospital together. However, I did not want the film to be just about illness, because Diana and Kathy have so much more going on in their lives. The filmmaking process includes a time of focusing on the question, “What is the story?” Along with their activism, we wanted to include the story of a large Illinois institution for people with developmental disabilities that was trying to reorganize. We also pursued Diana’s search for her mother, which was a storyline that brought her childhood to closure. Diana, Kathy and I became close because of all the things we’ve been through over the five years that we filmed.
Simone: How did you become involved in making films about people with disabilities?
Alice: My first film, The Collector of Bedford Street, was about my neighbor, Larry Selman who has an intellectual disability. When I started that project, I began to learn about the challenges he faces. I also discovered that there were hundreds of people who were interested in his story. A community of self-advocates, caregivers, administrators and individuals have embraced my work. Sustaining these relationships brings me new projects.
Simone: What’s next on the horizon for you?
Alice: I’m making a film about a couple with Down’s syndrome called 2 Weddings and a Future. One family is Christian, the other Hindu. He’s a musician and she’s a teacher’s aide. When the couple got married they were optimistic about how their worlds would blend; now they’re working out the details of independent living and self-determination.
Simone: What drives you as a filmmaker?
Alice: I’m creating change in the world by telling stories that might not otherwise get told. I like being an artist and an activist. Exploring the ability to use art for change gives me a purpose to get up every morning. How many people can say that?