A Disability in the Family
Tuesday, November 13, 2007
When Dan Habib's toddler son, Samuel, was diagnosed with cerebral palsy, he and his wife were devastated, afraid -- and worried about his future.
"How could he run around on the playground and play kickball when he couldn't run?" asks Betsy McNamara, Samuel's mother. "How could he yak on the phone with his teenage friends when he has trouble talking? How could he get a full education and go to college when he can't hold a pencil?"
Habib, a photojournalist based in Concord, N.H., got behind his camera to answer some of those questions. He shot video and still photos to create a documentary film, "Including Samuel," which premieres in Washington on Thursday night at the Avalon Theatre.
In the film, we learn that in many ways, Samuel is much like any other 7-year-old. He likes hot dogs and tee ball, and is debating between careers as an astronaut or a race car driver. Like a good New Englander, Samuel roots for the Boston Red Sox, and he loves watching games with his big brother, Isaiah, 11.
Doctors still don't know what caused Samuel's condition, even after countless tests and mapping his DNA. Cerebral palsy disrupts the brain's ability to control muscle movement. Samuel's most visible symptoms are that he uses a wheelchair and slurs his words.
And he is especially vulnerable to illnesses. In 2004, he caught pneumonia after getting his tonsils removed, and doctors had to induce a coma to stabilize him and insert a breathing tube.
It was there, at Samuel's hospital bedside, that Habib decided to make the film. Samuel's neurologist suggested Habib use his photojournalism skills to show what life is like for parents of a disabled child. The film gave Habib a project other than worrying about his son. "I realized it might help me get through this," he says.
Habib, 42, the photo editor of the Concord Monitor, made a documentary about teen sexuality in the mid-'90s. While making "Including Samuel," he struggled to balance the roles of filmmaker and father. He says he always erred on the side of being a dad, not that he had much choice: Samuel and Isaiah were quick to tell him when to drop the camera and play baseball.
In the film, Habib interviews disability rights advocates including Keith Jones, a hip-hop artist with cerebral palsy who, at a young age, told his teachers that he wasn't interested in doing arts and crafts all day and that he'd rather do math assignments.
As for Samuel's education, Habib is pro-inclusion, meaning that he wants Samuel to attend the same types of schools that Isaiah does. Samuel is in second grade at Beaver Meadow Elementary School, which started including students with disabilities in mainstream classes about 20 years ago. (Isaiah also attended Beaver Meadow; he's now in middle school.)
Habib's views presented a challenge for him as a journalist, because he wanted to show both sides of the inclusion issue. An emotional interview with Carol Ward, a horticulture teacher at a public high school, reveals the strain that the policy can have on teachers.
"I did not have any formal or informal training to have these students in my class," Ward says in the film. "I have cried many times about this year. I don't know what to do. I don't want another year like this year."
He also introduces Emily, a young woman with schizophrenia who has attended both public schools and more-specialized schools, moving around to different learning environments to fit her needs.
"Every parent makes the decision they feel is best for their child," Habib says. "I would not judge any parent for their decision."
The film had its world premiere in Concord last week. At the screening, Isaiah reveled in signing autographs for fans. Samuel said his favorite part of the movie was sitting next to Jacob, his friend from school, McNamara says.
"He's excited mostly about his friends," Habib says. "That's where he's at and where he should be at." ¿
"Including Samuel" plays Thursday at 5:30 and 8 p.m., though the late show is full. Avalon Theatre, 5612 Connecticut Ave. NW. Free. 202-966-6000. The DVD is available for purchase athttp:/