Storytelling and advocating for the rights of people with mental disabilities are one in the same for New York-based Allan Goldstein, who became the primary caretaker for his mentally disabled brother Fred in 1998 after both their parents had passed away. By then, Fred had already spent most of his life in institutions. “It was stunning when Fred and I slept under the same roof for the first time in 35 years,” says Allan.

“As Fred’s link to the ‘typical’ world, I had a lot to learn—about Fred; about the bureaucracy surrounding him; about being a big brother and guardian,” explains Allan. “I did a great deal of reading about intellectual and developmental disabilities—what they are; why they exist; society’s changing attitudes; and the groundbreaking heroes. I then wrote to understand.”

In his piece in our “My Life So Far” project, “An Unanticipated Love,” Allan writes about the romance between Fred and a mentally disabled woman named Michele, and Allan’s struggle to understand what romantic love means to Fred in light of his cognitive limitations.

Read more about the brothers on Allan’s Finding Fred blog, and check out Allan’s responses to SMITH’s six questions, below.

How did you become an advocate for people with mental disabilities?
Until the recent emergence of self-advocacy, people with disabilities were without a voice. As Eunice Kennedy Shriver often said, sometimes people get lost in the system set-up to serve them.
Just as passion has no taste, fury has no boundaries. Severe mismanagement of Fred’s medical history made me realize I needed to be involved.

When did you begin writing?
Having thoughts I wanted to explore about Dad’s death ten years earlier, I signed up for a New School writing class in 1997. I had been a “looking-for-work” actor for twenty-plus years (under a professional name). Seeing that I could work every day as a writer, I never auditioned again. Unlike theater agents and casting directors, I was pleased that decision-makers in the writing world at least responded, if only to say no.

How does your writing life fit in with the rest of your life?
I wrote an 80,000-word memoir about reuniting with Fred, which dovetailed with my teaching responsibilities as Assistant Director of the Writing Program at NYU-Poly and an instructor of English and ESL. I couldn’t teach without writing scheduled into my day; it centers me.

What surprised you most when you became Fred’s caretaker?
Dad had been dead ten years when Mom died. I went to tell Fred, and his immediate reaction was to say that he was next. I was surprised by his ability for abstract thought. My wife, a psychoanalyst, insisted that there was a great deal of ability within Fred.

Earlier this month, a short documentary film about you and your brother, Finding Fred, was featured at the Sprout Film Festival in New York. Tell us a little bit about the film?
The film is about the love, admiration and enormous devotion between two brothers once separated by the Willowbrook State School for the Retarded. In ten minutes viewers learn of our lives before, during and after institutional years, including Fred’s present life in lower Manhattan working and volunteering with the AHRC Walter and Evelyn Redfield Adult Day program and contentedly living in an AABR group home.

Finally, Allan Goldstein, what’s your Six-Word Memoir?
Finding another leads to discovering oneself.