Mental illness tinges brothers’ bond

By GABBY TEMPLET of the Hampshire Gazette
Wednesday, March 20, 2002

While making 16 movies over two decades, Larry Hott had always hired someone else to do the filming. For his latest work, though, Hott looked through a digital video camera viewfinder and quickly realized the new technology would bring him closer than ever to his newest subject: a portrait of the relationship between two brothers, one of whom is mentally ill.

Given the intimacy of his project with Jay and Robert Neugeboren, the closeness counted.

"When I'm taping Jay and Robert they relate directly to me without anyone else being involved," says Hott.

"Imagining Robert: My Brother, Madness and Survival," the latest documentary for Hott's Florentine Films/Hott Productions, Inc., is inspired by former University of Massachusetts professor Jay Neugeboren's acclaimed book of the same name, published by William Morrow and Company Inc. in 1997.

Using the book as a guide, Hott set out in 1997 to capture the story of Neugeboren's younger brother, Robert, and his four-decade battle with mental illness. Robert Neugeboren suffers from schizophrenia and manic depression.

The one-hour film will premier in a free showing in Northampton on April 28. It tells the story of a family's struggle to come to terms with a member's devastating and dislocating mental illness. Both Neugeborens will attend the 7:30 p.m. screening and join a discussion later in Wright Hall at Smith College.

The film, Jay Neugeboren says, captures what such an illness means inside a family. It's a portrait, he says, "of two brothers that personifies and exemplifies the pain and joy a family goes through."

He has said that his brother is a kind of walking archaeological dig of mental health treatment in the 20th century. Since his first episode with mental illness in 1962 as a college freshman, Robert Neugeboren has been hospitalized more than 50 times, lived in a variety of institutional settings and endured treatments that have included gas inhalation, restraints and an abundance of psychotropic drugs. "The very history of the ways in which our mental health system has dealt with the mentally ill has been passing through my brother's mind and body," Neugeboren says.

The story comes to life

Though Hott and Jay Neugeboren had known one another for years, Hott says he hadn't seen the possibility of a film project.

"Every once in a while Jay would mention this brother he had," says Hott.

It wasn't until 1997, though, when Neugeboren read from "Imagining Robert" at their synagogue in Northampton, that the brothers' story came to life for the filmmaker. Hott says he was astonished by the way Jay Neugeboren, an accomplished fiction writer, so vividly articulated the relationship with his brother.

"The idea of brothers," Hott says, "is poignant and universal."

In the Neugeborens' case, it was a relationship that at times meant Jay getting calls from the police at 3 a.m., with Robert in their custody. It meant Jay wrangling with the New York City mental health system and watching Robert's health suffer with the administration of medications like Lithium and Thorazine.

Hott says he saw that any film should be not just about Robert, but also about Jay - an author who at the time was a UMass writer in residence. "Parentheses: An Autobiographical Journey" and "An Orphan's Tale" are among his best-known works.

His book "Transforming Madness: New Lives for People Living with Mental Illness," released after Hott began making the film, has brought him national acclaim.

Hott realized the potential for the project when he heard the questions and comments from the audience at the synagogue. "Everyone had a connection to this issue. They said things like 'I have a brother, I have a sister dealing with this,' " Hott recalls.

The National Institute of Mental Health estimates that 17 million Americans have family members suffering severe, long-term mental illnesses.

Collaboration began

Hott approached Neugeboren, who expressed concern that his brother not be embarrassed by any work created. For his part, Robert Neugeboren says he wanted only the guarantee that his privacy be respected. "I wanted to make sure nothing personal got out," he said.

Hott and Neugeboren began collaborating and Hott worked on fund raising, enduring the usual rejections. Months passed before the project received any financial support. Then, in 1999 Hott was awarded a $10,000 grant from the Massachusetts Foundation for the Humanities for "Imagining Robert."

"It was incredible what we did on those two years on that budget," Hott said. "We barely had anything."

Hott and Diane Garey, his wife, who is a film editor, received subsequent grants from the Rosalynn Carter Fellowship for Mental Health Journalism, the Animating Democracy Initiative of Americans for Arts and an additional grant from the Massachusetts Foundation for the Humanities.

In all, Florentine Films received $92,000, roughly half the intended budget.

Venture south

In 1997, aboard Hott's old Volvo station wagon, the filmmaker and Jay Neugeboren traveled down Interstate Highway 91 toward Staten Island, N.Y., to meet up with Robert at the South Beach Psychiatric Center, where he was living.

While Neugeboren drove, Hott interviewed him in the car, recording the session. With camera rolling, they picked up Robert.

"He began talking immediately, reciting poetry he had written," Hott recalls.

Jay Neugeboren remembers his brother that afternoon as having a good day. Robert began playing to the camera, dancing in the parking lot and "acting very free" with the waitresses at the Mexican restaurant where they ate lunch.
"I found him utterly delightful and knew there was something he had that was valuable," Hott says. "He was very comfortable with the camera, as though he were a celebrity."

Jay Neugeboren recalls that when they were children, his brother would tap dance on street corners and in the local candy stores for money. In a phone interview from the Fountain House in New York, a day treatment program where he is enrolled this winter, Robert confirms that performance meant a lot to him. "I took tap-dancing lessons, ballet, choreography, oboe, a little accordion, a little piano," he said.
Jay Neugeboren adds that his brother was gifted at writing, singing and painting.

After returning home, Hott showed the material to Garey. She loved it, seeing in the film what Hott says he'd envisioned at the synagogue.

Soon after, Jay recovered some old movies and photographs of the brothers growing up and Hott was able to track their lives through these old documents, giving the film a long reach.

"I saw them at 4 and 8 and now seeing them at 57 and 61, still acting like brothers, still laughing at each other's jokes," Hott says.

Good timing

The timing was just right when the humanities grant came through in 1999 and filming could finally begin. It was a crucial point in Robert Neugeboren's life. With the help of publicity from Jay Neugeboren's book, and a letter critical of his brother's care at the Bronx Psychiatric Center, Jay was able to move his brother into Project Renewal, a halfway house in New York City.

Jay Neugeboren describes it as a welcome change from the "prison-like loony bin" Robert was in.

The move gave Hott an opportunity to advance the narrative. He could film Robert Neugeboren adjusting to living with far more independence - after having moved from one psychiatric center to another for most of his adult life.

It also allowed Hott to see the brothers going out around the city, Robert cooking his own meals and taking care of himself at Project Renewal.

Robert says the shooting was fun for him. "Larry and his wife gave me lots of gifts and bought me lunch all the time," he says. He also enjoyed meeting people on the film crew, he says. "I really liked the sound guys."

Revelations

During the filming, Hott says he made discoveries not only about the Neugeborens' lives, but about himself, as he viewed the story as cameraman.

The filming at Project Renewal was physically exhausting, Hott recalls. But in time, the camera "became an extension of my eye." Many times, Hott insisted on being with Robert apart from his brother. He built a relationship with him through the camera.

At one point, Hott reads sections of "Imagining Robert" aloud to him at Project Renewal. The film captures Robert's distress as he reads through a diary he had kept while living at a psychiatric hospital 30 years before. It is where he ended up after his first breakdown while a student at the City College of New York. Recollections of beatings and isolation emerge.
From behind the camera, Hott continually interviews both Neugeborens. "I never meant to be a character in the film," says Hott.

But this gives the film an added perspective, as Hott stands in for the viewer, asking questions and looking at things as a viewer might.

Throughout the filming, Hott says, he sought to evoke reactions in his subjects. In one of those instances, Jay Neugeboren and Hott went to the Florida nursing home where the Neugeborens' mother lives.

In the advanced stages of Alzheimer's disease, she is unresponsive and immobile.

Jay Neugeboren sits next to her bed and slowly recounts the story of the day his mother and father left Robert at a hospital in 1973. Hott pushes the camera in close to Neugeboren and his mother, creating an almost claustrophobic feeling for the viewer.

"We capture it on camera and then replay it to Robert. It is an extremely emotional scene," Hott says. "It's emotional, just talking about it."

New projects

Hott and Garey have moved on to other projects. Two-time Academy Award nominees and Emmy and Peabody award winners, they are now working on an environmental film about Alaska. Jay Neugeboren has retired from UMass and lives in New York City, where he is working on his next novel. Poems written by Robert Neugeboren are about to be published. "I am very excited," he say of that project.
After premiering in Northampton, the film will be shown on PBS stations. It will also be used in workshops with state chapters of the National Alliance for the Mentally Ill, local police departments, and mental health recovery programs, Hott says.

Having stepped behind the camera, Hott has a new perspective.

He says the project was liberating. Through it, he says, he discovered new ways to articulate a story on camera, even one as complex as the Neugeboren brothers' relationship. "This is the 17th professional film in my 23-year career," he says. "I realize I can still learn major things."