Born with cerebral palsy, but a boy like any other

There is a moment in the documentary "Including Samuel" in which grade-schooler Isaiah Habib playfully rough-houses with his little brother, rolling over young Samuel, who has cerebral palsy.

The boys' father, Daniel Habib, witnesses the entire incident. But rather than separate the siblings, he films them, letting boys be boys -- even if one of his sons spends much of his time in a wheelchair.

Samuel slurs his words, but his beaming smile says everything.

And so does the title of this 55-minute documentary, which will be shown for free at the Best Buy corporate auditorium in Richfield, on the evening of Jan. 9.

Daniel Habib, an award-winning photojournalist, and disability rights activist Keith Jones will present "Including Samuel" and lead a discussion about the benefits and challenges of including children with disabilities in typical schools and classrooms. Then on Jan. 10, Habib and Jones will lead a daylong training session for 300 staff members of the Anoka-Hennepin School District.

"There's a phrase, 'the dignity of risk,'" Daniel Habib said from Concord, N.H., where he is a filmmaker-in-residence at the Institute on Disability at the University of New Hampshire.

"Do we let Samuel have the experiences peers have?"

The questions were very different when Samuel, now 8, was 7 months old. Habib and his wife, Betsy McNamara, were "at a place where something's wrong, something really bad, something serious" with their infant son.

Samuel wasn't rolling over, wasn't sitting up, wasn't doing many of the things that older brother Isaiah had done four years before, at the same age, Habib said. The odyssey had begun -- not Samuel's journey, but his parents' journey as well. If "Including Samuel" is about growing up, it is as much about parents' strides as it is about a child's progress.

Samuel's parents bounced around, from neurologist to neurologist. One offered a number of diagnoses, including disorders, most completely foreign to the Habibs. Daniel researched one on the Internet and was stopped cold by the word "fatal."

"It turns out this neurologist didn't know what was wrong with Samuel, but all that mattered at the time was keeping Samuel alive," Habib said. "I can handle anything short of that."

At one point, after Samuel was given the diagnosis of cerebral palsy, his mother wondered: How he could play kickball if he couldn't run? How could he go to college if he couldn't hold a pencil?

Cerebral palsy is caused by abnormalities in parts of the brain that control muscle movement. It's genetic, but Habib says that he and his wife "beat ourselves up" wondering if they did something wrong to create a disability that can't be cured, but can be treated to help children overcome developmental disabilities.

Eventually Habib and his wife reached this revelation: "Our family can have an incredible life as long as society keeps up with Samuel."

In 1989, Habib was a new staff photographer with the Concord Monitor. He worked on a story about a 6-year-old boy with cerebral palsy who was a student at the Beaver Meadow Elementary School there. Among the school's missions was mainstreaming kids with disabilities in regular classrooms.

"It seemed like the right thing," Habib recalled.

And now that cerebral palsy had entered his family's lives, it seemed like the only thing.

"We want Samuel to be completely accepted by our community. How can he possibly feel that way if he's not part of school?"

Overcoming prejudice

So when Samuel, a third-grader, expressed interest in karate, his parents supported him -- being turned away from three karate studios before one welcomed him.

Through the rejections, fears and questions that a viewer shares in watching this beautiful documentary, there is Samuel's intoxicating smile. That smile may not melt away every bias that hovers over people with disabilities, but it constantly presents the "aha" moment that defines Habib's documentary.

"I hope after people watch this, they'll think, 'I never knew disabled people could lead such full lives,'" Habib said. "Or maybe they'll think, 'I didn't realize inclusion could mean so much.'

But first you have to get beyond that killer smile.