For most of her life, Susan silently carried around a dark family secret. That secret was her brother, Alan, who has autism and intellectual impairment. Alan was born less than a decade after the emergence of the refrigerator mother theory — a time when cognitive disability was associated with shame.
When doctors recommended that Alan be placed in an institution, his and Susan’s mother and father spent years searching for alternatives, to no avail. “The system,” explains Susan, “offered not a minute’s worth of help in caring for or teaching him.” In 1958 their parents reluctantly heeded the advice of the medical establishment, and eight-year-old Alan was sent to live in a state-run facility. Susan remembers the occasion as “wrenching.” And from then on, the family seldom mentioned his name.
One day, however, when her mother received a flier from AHRC announcing a sibling support group, Susan’s life changed. For the next three years, she spent one Sunday each month engaging in intense discussion with siblings of people who had cognitive disabilities. With the encouragement of these new friends, Susan began driving up alone to the forbidding gates of the institution and asking an often sleepy security guard if she could please see her brother. The connection between Susan and Alan, and subsequently their parents, was revived. Susan’s award-winning film, Without Apology, charts her steadfast journey of rediscovery, anger, tears — and, ultimately, love.
Susan says about the moment Alan was sent away:
“From that day on, any mention of Alan by our parents was suddenly
and strangely taboo. Although we paid him a monthly visit, a strange
ritual with strict, unspoken rules, it was as though he were no longer
a member of our family.”
“In Without Apology,” says Susan, “I attempted to lift the veil of the silence that enshrouded us, and in the process I learned some startling facts. One of the most stunning was that my mother had been accused of having caused Alan’s autism. She had come of age just as the idea of the refrigerator mother was gaining currency. She’d never mentioned this, and I could only imagine what that pronouncement must have felt like. But as I dug into Alan’s past, I was to come across other equally devastating moments in the history of intellectual disability.”
The making of Without Apology was part of the healing process for Susan. “It was perhaps the most significant effort of my life, in which the tangle of family shame and social history could be examined, and in the process, brought into the light for me and the many others who shared our story,” she says.
The path to restoration, however, wasn’t without obstruction. Even after the institution closed and Alan went to live in a group home, there were problems. Alan was kept on several medications — tranquilizers and so-called mood stabilizers — that subdued him and made him drowsy. Susan realized that the drugs were for the benefit of those charged with caring for Alan. After her parents died she took up a long battle with the state, appealing up and down the chain of command until, finally, the medications were eliminated from his regime. During this period Susan willingly became Alan’s legal guardian.
Seeking non-medical ways of calming her brother, Susan discovered the power of music. Two years ago, shortly after Alan turned 60, she hired a music therapist, who now comes regularly to give him lessons on all kinds of instruments as well as movement. Once deemed incapable of any kind of engagement, Alan has shown a deep passion for drumming, and even dancing. Susan is working on a follow-up to Without Apology in which she chronicles Alan’s exciting progress as a result of this newfound interest.
“In the eight years since I’ve been his advocate,” says Susan, “I can feel our similarities, our genetic bond. I put on my favorite radio station when we’re driving around, and he listens with every fiber of his being. I’ll look over at him and realize that tooling around together on the quiet roads, we’re in sync. And I wonder whether this isn’t a perfect moment.”
Additional Information and Links
Without Apology screened nationally and internationally, winning the Best Feature Documentary award at the BAC International Film Festival and second-place Audience Award at the Hearts and Minds Film Festival.
Susan has been writing about Alan’s experiences on her blog, jazzrman.blogspot.com. In addition to the sequel to Without Apology, she’s developing a film titled Mama Sue’s Garden (mamasuesgarden.com), about four survivors of Hurricane Katrina. The work-in-progress screened at the New Orleans Human Rights Watch Film Festival (April, 2008); the completed film is due out in spring 2013.
Susan lives in Brooklyn, NY, with her husband and teaches documentary studies at New School University.