Four years ago, one of my sons lay in a medically induced coma. Samuel was four years old and had developed pneumonia from complications following a tonsillectomy. As I waited by his bedside, one of his doctors, Dr. James Filiano, encouraged me to photograph the experience, perhaps as a way of managing my fear. That was the moment I began to move towards documentary filmmaking, which was a new direction for me professionally and personally.

Soon after, I began working on Including Samuel, a 58-minute documentary that was released last year. As a father and as a director, my experience with the project helped to calm my fears, while pushing me to examine my biases. The film became my outlet for processing a new reality in our lives: We had a child with a disability.

When Samuel was about one, we found out that he had cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair, and it’s difficult for him to talk.

My wife Betsy and I would stay up nights, comparing notes: What did Samuel do better that day? What did he do worse? We weren’t new parents; we had an older son, Isaiah, who was then four. But our youngest child’s disability tested us in new ways.

“How can he get a full education and go to college when he can’t hold a pencil?” Betsy wondered aloud.

Maybe Samuel’s inability to hold a pencil wouldn’t be such a big deal. What if his condition were simply considered another version of “normal”? What if he participated in everything that everybody else did?

I made Including Samuel to chronicle our family’s efforts to mainstream our son into our neighborhood school, into social activities intrinsic to our community and into the daily routines of our family—every aspect of life. This central thread runs through the film.

I wanted audiences to get to know Samuel, who wrestles with his brother, loves t-ball and wants to be an astronaut when he grows up. Yet he is only eight, and relies on others to continue to include him. This will likely become more and more challenging as he gets older.

I also made the film to learn from the choices other people with disabilities and their parents have made. I wanted to see how these choices have shaped their lives. So Including Samuel also documents the experiences of Keith Jones, Alana Malfy, Nathaniel Orellana and Emily Huff, along with their families, educators and their communities as a whole.

This tale began 20 years ago when, as a newbie staff photographer for the Concord (NH) Monitor, I photographed a story at one of the first local elementary schools to include kids with disabilities in mainstream classes. I cared about the topic, but it didn’t have much relevance to me at the time. Today, Samuel is in second grade at this school, Beaver Meadow, and I think about inclusion every day.

As Samuel’s dad, I am forced to look at my own prejudices. In years past, when I saw people who couldn’t walk or talk, I often assumed that they weren’t as smart, as capable or as worthy of getting to know as others who did not have these disabilities. Now I wonder Is that how the world sees my Samuel?

Recently, Betsy and I decided to attend the Disability Leadership Series at the University of New Hampshire Institute to learn how we could be more effective advocates for Samuel. We heard from disability rights leaders such as Norman Kunc, who spoke about his “right to be disabled.” He told us that if he were offered a pill to cure his cerebral palsy, he wouldn’t take it. “I would have to create my identity all over again,” he said. “I like who I am, I like the work I do.” The Leadership Series helped us to see Samuel’s disability as an intrinsic part of who he is.

My hope is that my film will inspire the public—especially anyone connected to education—to talk about inclusion in a more informed and innovative way. I also hope they will get to know my son at the same time.

Making this film helped me envision the life we want and expect for Samuel. We have a supportive network of teachers, therapists, relatives and friends who help us work towards that goal every day. And there is Samuel himself whose smile and persistence make clear his own vision of happiness.

Samuel brought the disability rights movement into our home. It came with lots of questions: Will his middle and high schools continue to fully include him? What about the times when illness forces Samuel to miss weeks or months of school? As an adult, will he find a mate? Will he get a job that fulfills him? Only time will reveal the answers. But for now, I know that Samuel loves life, he loves to laugh and he loves the Red Sox.

Ultimately, I am certain that my son will teach a lot of people, which is a good thing because the world has a lot to learn.

by Dan Habib

For a film trailer and more info, visit: www.includingsamuel.com

Habib Family

ABILITY Magazine
Other articles in the Herschel Walker issue include Green Pages—An Old Fashion Clothesline; Faucet Aerators;Pate—Winter Sports Clinic Highlights; Humor Therapy; Man’s New Best Friend; Headlines—Splel Chceker, Drum Therapy, HBO Film and more; George Covington—Nobody Walks In Texas; Ouch!—Relief for Fibromyalgia; Best Practices—Sprint Has Your Number; A Place Called Home—Disability Legal Rights Center; UCP—A Ride to Raise Funds and Awareness; Ability on Assignment—Qatar, Shafallah Forum; Essay—Spread Respect; ABILITY's Crossword Puzzle; Events and Conferences...subscribe