CONCORD, N.H - In 1989, when Dan Habib was a new staff photographer with the Concord Monitor, he shot a story about a 6-year-old boy with cerebral palsy who was a student at Beaver Meadow Elementary School in Concord. The school was at the forefront of the mainstreaming movement to integrate kids with disabilities in regular classrooms.
Habib remembers how much he loved seeing, and documenting, the interaction between the children with and without disabilities. "It just seemed like the right thing to do for kids with disabilities," he recalls. "I think it made truly moving photos."
What he never anticipated was that the story of mainstreaming - now more commonly called "inclusion" - would become his own family's story, and that he'd return to Beaver Meadow years later as a father and photojournalist. This time the little boy with cerebral palsy in the classroom would be his own.
"Including Samuel" is Habib's 55-minute documentary about his second son, Samuel, who will turn 8 this week. It's the story of his family's efforts to include him in his school, family, and community, and that of other families with a range of experiences with inclusion, both positive and negative. It will premiere in Boston tomorrow at a sold-out screening hosted by the Institute for Community Inclusion at the University of Massachu setts-Boston.
But it's also, says Habib, "the story of my own transition as a person."
When Samuel was diagnosed with cerebral palsy, which disrupts the brain's ability to coordinate body and muscle movement, Habib and his wife, Betsy McNamara, reacted with a flurry of different feelings - love, fear, grief, worry, and ultimately hope and acceptance. How would they educate him? Who would be his friends? Because his cerebral palsy was caused by an unknown underlying health condition that also makes his health more fragile, he has been hospitalized several times.
Three and a half years ago, during one hospital stay for severe pneumonia, a neurologist suggested to Habib that he should document the family's experiences. "He thought it would be helpful to others," Habib says. "It's very hard to understand what it's like to have a child with a disability unless you have a child with a disability."
Habib, who has received numerous regional and national awards, has a particular interest in issues related to children and education. In the mid-1990s he documented the lives of eight young people, through photographs and interviews, in a project about teen sexuality, which was shown at free public screenings throughout New Hampshire.
The doctor's suggestion immediately appealed to him, not as a journalist but as a father. He thought it would help take his mind off his son's health issues. "Also, I thought maybe it will help me process this whole reality that our son will have a lifelong disability," he says.
The idea did not immediately appeal to his wife, Betsy McNamara.
"My first thought was: "What?" said McNamara, a fund-raising consultant. "He's always got a camera around, but this was more personal than I wanted it to be."
Eventually she came around - though, she says, "I'm still a little weirded out by such an intimate portrait of our family." Over the course of three years he took more than 12,000 photographs and 60 hours of video, no small feat since this was his first experience shooting video, other than typical home videos. He borrowed a friend's mini video camera and used a simple on-camera microphone. "I did it on a wing and a prayer," he says. "I've applied everything I've learned as a journalist to do this."
He's learned, for example, never to oversimplify a story. He acknowledges in the film, which he narrates, that the process of making "Including Samuel" forced him to confront some of his own early prejudices about people with disabilities.
"When I saw people who didn't look like me, or talk like me, you know what crept into my head?" he says in the film. "I don't like to admit it, but I often saw them as less smart, less capable, and not worth getting to know." He adds: "I hate to think that's how people see Samuel."
As his wife had anticipated, the film turned out deeply personal. It deals not only with inclusion in school and the community but with the challenges of successfully including a child with severe disabilities in family life.
Though Habib appears on screen less than other members of the family, he conveys how taxing it can be to raise a child with a disability. Samuel uses a wheelchair, an eating chair, and walkers at home and at school. The family spends hours each week preparing medicine, doing paperwork, and taking him to appointments. But Habib reveals his frustration with people who, he believes, see his bright-eyed son as merely a one-dimensional disabled person. "When Samuel was drooling, or struggling to say a word, I wanted to say, 'That's not who he is. He's really intelligent and funny and caring.' "
"There were periods when Samuel's health was so shaky and bad that we couldn't go anywhere as a family," Betsy says in the film. "We missed a lot of family gatherings. We missed a lot of holiday celebrations. We just found ourselves feeling isolated."
Samuel's 11-year-old brother, Isaiah, also talks candidly, and poignantly, about life with his brother. "I know that he needs a lot of attention, and I try to face that. Like when he's sick, he gets . . . a really lot of attention. And . . . it just feels like you guys don't care about me. Like, 'Hey, I'm over here also. I'm right here!' "
Yet the documentary reflects the joy of family life with Samuel, who, with assistance from his father, is involved in such activities as T-ball and basketball, and who roughhouses with his brother just like any other sibling. It takes us into Samuel's classroom at Beaver Meadow Elementary School, where, with the help of a supportive teacher and aides, inclusion keeps Samuel involved, learning, and upbeat. The other children see him as just another second grader who likes spaceships and hot dogs and the color yellow, and wait patiently for him as he answers questions.
"The film taught me a lot," Habib says. "It taught me what it takes to make inclusion work, such as a lot of support in the classroom. On a professional level, it taught me how to make a film."
"And on a personal level," he says, "Samuel has taught me patience, and how to listen to people, and how not to judge them so quickly. And that extends to anyone from new immigrants to people who are aging and are moving and talking more slowly."
He acknowledges he learned some of these lessons just by being Samuel's father. But he learned much of it from recording Samuel's life. "I think the film helped me pay closer attention to what I was experiencing," Habib says. "It helped me document and collect my feelings in a more cohesive way."
For information about future screenings of "Including Samuel," visit includingsamuel.com.
