|by Dan Habib
A CASE FOR INCLUSIVE EDUCATION: Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. His award winning documentary film, "Including Samuel," chronicles the Habib family's efforts to include Samuel in every facet of their lives. The film honestly portrays his family's hopes and struggles as well as the experiences of four other individuals with disabilities and their families. Currently airing on Public TV nationwide, "Including Samuel" is his very personal effort to inspire the public -- especially anyone connected to education -- to talk about inclusion in a more informed and innovative way. Here he shares his story, his passion and a wealth of resources with (it) magazine.
Four years ago, my son, Samuel, lay in a medically induced coma. He was four years old and had developed pneumonia from complications following a tonsillectomy surgery. 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. It was the moment that I began to move towards filmmaking, a new direction for me both professionally and personally.
I began working on Including Samuel, a 58-minute documentary that was released nationally late last year. As a director and as a father, my experience with making the film not only helped me face my fears, but also my biases. The project became my outlet for processing this 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 is difficult for him to talk.
My wife Betsy and I would stay up at night, 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, 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.
I made Including Samuel to chronicle our family's efforts to include him in our neighborhood school, in the sports programs and social activities intrinsic to our community, in the daily routines of our family -- every aspect of our lives. Samuel's journey is the central thread through the film, and I wanted viewers to learn a lot about him beyond the fact that he has a disability:
He wrestles with his brother. He loves t-ball. He wants to be an astronaut when he grows up. Yet Samuel is only nine, and including him will likely become more and more challenging as he grows up. So I also made this film to learn from the experiences of other people with disabilities who can look back on the choices they and their parents have made, and to see how these choices have shaped their lives.
Including Samuel also documents the experiences of four other subjects: Keith Jones, Alana Malfy, Nathaniel Orellana, and Emily Huff, along with their families, educators, other students and their communities as a whole.
ECHOES OF A PAST STORY
Today, Samuel is in fourth grade at this school, Beaver Meadow, and I think about inclusion every day.
Being Samuel's dad has forced me to look at my own prejudices. When I saw people who couldn't walk or talk, what crept into my head? It's painful to admit, but I often saw them as less smart, less capable, and not worth getting to know. Now I wonder Is that how the world sees Samuel?
Betsy and I decided to attend the University of New Hampshire Institute on Disability Leadership Series 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. Norman said that if he were offered a pill to cure his cerebral palsy, he wouldn't take it.
"I would have to start 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.
GETTING TO INCLUSION
I also hope they will get to know Samuel 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: Can we continue to fully include Samuel as he goes to middle and high school? What about the times when illnesses force Samuel to miss weeks or months of school? As an adult, will he find a mate? Will he get a job that he likes?
I don't know the answers to those questions right now. But I do know that Samuel loves life. He loves to laugh and he loves the Red Sox. He's determined to keep up with his brother, and to be a part of everything that we do.
I know that he will teach a lot of people, which is good because the world has a lot to learn.
(it): How did you find your passion and turn your particular life situation into national work on this issue?
DH: My parents are activists. They modeled that through their work (my dad is a retired professor and my mom a retired social worker) and through their activism (I probably went to 4 major rallies in D.C. before I was 13). They passed on their values to their 3 children: primarily a belief that we are here to make a difference in this world. Making "Including Samuel" is consistent with what I've tried to do my whole career: take a complex -- and often controversial -- issue, and try to tell the story in a way that is a catalyst for informed discussion. Often, that leads to social change. In the past, I didn't care so much where the discussion led -- my passion was providing our readers with a more in-depth perspective through my journalism.
"Including Samuel" is a far more personal project than I had ever done before. As a photojournalist, I had always pointed the camera at other people. Documenting my own family's story was different. As I launched this project in 2008, I felt so strongly about inclusion that I left journalism and became an advocate as well as a documentarian. I couldn't be an advocate while in journalism, and didn't aspire to become one. It was when this issue hit me so personally that I realized it was ok to tell people how I felt as a father, and where I hope the world evolves in terms of disability rights and inclusion.
- (it) -
CALL TO ACTION! Learn more about inclusion and how you can find ways to support disability rights by going to www.includingsamuel.com or go to the Make It Happen page now for easy action steps and informative resources.
Dan Habib directed, produced and shot the award-winning "Including Samuel". Habib is the filmmaker in residence at the Institute on Disability at the University of New Hampshire. Until April 2008, he was the photography editor of the Concord Monitor. In 2006 he was named national Photography Editor of the Year for papers with circulations of 100,000 or less. His freelance work, including extensive documentary work in China, has appeared in numerous publications, including Time, Newsweek and The New York Times. He and his family live in Concord, NH.