Filmmaker Interview

POV: What is your motivation as a filmmaker? What inspired you to make Refrigerator Mothers?

Hanley: Powerful documentary inspires my interest, and I believe the best documentaries are those which expose the poignancy in the lives of real people faced with tough challenges—often through something as simple as the wave of a hand or a pause between words.

I was inspired to make Refrigerator Mothers after my personal experience with mother blame just a few years ago. My family's pediatrician told me that my three-year-old son's failure to speak and strange, self-isolating social behaviors were a reaction to what the doctor described as my over-anxious, over-bearing mothering. The doctor advised me to leave my son alone and that he would be just fine. Nine months later, my son was diagnosed with pervasive developmental disorder/autism. One of the few books on autism at my local library was The Empty Fortress, by Bruno Bettelheim. Upon reading it, I realized that I had experienced the legacy of the mother blame theory. I wondered, What must it have been like to raise an autistic child in the '50s and '60s when blaming mothers was all the rage? How did it feel to be burdened, not only with one's own feelings of natural guilt, but to wear a shroud of blame from an entire professional community, for having caused this mystifying — sometimes terrifying — disorder in one's own child? So I decided to make a documentary about "refrigerator mothers."

Quinn: When J. J. first approached me about her idea to tell the stories of the "refrigerator mothers" in a documentary film I knew that it was a project that Kartemquin Films had to be involved in. I had been at the University of Chicago as an Undergrad during the end to the Bettelheim years and had known mothers of autistic children who had been labeled refrigerator mothers. Starting with my first film "Home for Life" that dealt with a home for the aged I had been interested in the roles and responsibilities of experts, particularly those in the medical profession. Here was an opportunity to show the human consequences of experts who were not only wrong, but also for many years were not listening to the very people who were caring for the disabled children that the experts claimed to understand.

Kartemquin's mission has always been to tell stories from the point of view of the people and families that are confronted by the challenges of life in our American democracy. These challenges can come from growing old or just growing up, from having children or having dreams of success in sports, business, justice, education and the arts. The story of how these mothers overcame someone else's mistake is an inspiration and lesson for us all.

Simpson: In my filmmaking, I am often moved to investigate and document the courage of people at those moments when their artistic, spiritual or political journeys lead into uncharted waters. What drew me to work on Refrigerator Mothers was the sense that these women harbored stories of unfathomable sorrow and strength. The fact that so many parents did survive the blame, the guilt and the grief, and came out alive on the other side, is a testimonial to their strength and to the nearly unbreakable bond at the heart of familial love.

POV: Why did you choose documentary in this case?

Hanley: Early in my research for Refrigerator Mothers I was advised by several people to write a book or a feature story for a magazine rather than make a documentary about the subject. But I knew that anything written about autism would remain largely confined to the autism community and I felt that this story went beyond autism, offering lessons for society at large. In addition, autism as described in books, is hard to visualize and in real life people with autism usually look perfectly normal. I wanted the general public to get a sense of what the disorder looks like— how autistic people behave and react to a world that is confusing and over-stimulating to them— and I felt that could only be achieved through film.

POV: What was the most surprising thing to you in making Refrigerator Mothers?

Hanley: As I got to know the many mothers who contributed to the film — both on and off-screen, younger and older — I found it harder and harder to believe that anyone, anywhere, at anytime could ever have accused such courageous women of doing such a terrible thing to their children. So I guess I would say I was surprised at the outright stupidity of so-called professionals for not seeing such a ridiculous theory for what it was — especially when the evidence was right in front of them.

POV: What were your goals in making Refrigerator Mothers? And what would you like to see happen with it?

Hanley: Through Refrigerator Mothers, I hope to honor a generation of mothers who truly went it alone and whose children had little or no access to treatments that have assured my child a bright and productive future. I hope to recognize the contributions made by that generation of mothers, many of whom laid the groundwork for activism and advocacy in autism today. Finally, I hope this film helps to raise awareness of this growing disorder and reminds us of the beauty and humanity of autistic people.

Quinn: I hope that it can reach a wide audience. Particularly those in the medical and social service professions who could learn from the film and of course the parents of children with disabilities who hopefully will be supported in valuing their unique understanding of their child.

Simpson: We live in a different time today; one in which the doctor is no longer a god in a white coat. Still, I hope that the film will remind medical practitioners how important humility is in their art. The beginning of the Hippocratic Oath says: "First, do no harm." Here is a case in which major harm was inflicted on plenty of people because the medical field, when confronted by a disorder with a mysterious etiology, lacked the courage simply to say, "I don't know."

Likewise, my hope is that those patients (all of us) who see the film will feel further empowered to treat experts as resources rather than authority figures, and to take into our hands important decisions regarding our families' health, education, religion, etc.

POV: What are you currently working on or what would you like to be working on?

Hanley: I am developing two follow-up projects to Refrigerator Mothers. The first is a two-part documentary series for public television about the crisis in long-term care for developmentally disabled adults and how that affects the individual and reflects upon our society. The second is a journalistic series that takes a closer look at autism today, focusing on the current state of affairs and the heated debate about autism: the controversy about cause, the myriad of unproven treatments, the financial and emotional toll autism takes on families and the question of epidemic rates in diagnosis of the disorder.

Quinn: Kartemquin has just finished a film Stevie, about a troubled rural family, and we are finishing a six-part PBS series on immigration called The New Americans. On The New Americans I'm working on the Palestinian story.

Simpson: I am currently working on The New Americans, a multi-part series about immigration, produced by Kartemquin Educational Films and coming to PBS in 2003.