Including Samuel
BY DAN HABIB
Published: Tuesday, October 30, 2007
Three years ago, I sat at my son Samuel’s hospital bedside at Dartmouth Hitchcock Medical Center as he lay in a medically-induced coma. He was four years old and had developed pneumonia from complications following surgery. Samuel’s neurologist, Dr. James Filiano, encouraged me to be a photojournalist in the midst of my fear. “You should document this,” he said.
That moment pushed me in a new professional, and personal, direction.
I began working on “Including Samuel.” The 55-minute documentary film will be released nationally this fall. Making this film helped me face my fears and biases head-on, both as a director and as a father. The film became my outlet for processing this new reality in our lives.
Samuel has cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair and it is difficult for him to talk.
When Samuel was about a year old, 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 also have an older son, Isaiah, 10, but Samuel’s disability tested our parenting skills in new ways. “How could he get a full education and go to college when he can’t hold a pencil?” Betsy wondered.
“Including Samuel” is built on our family’s efforts to include him in our school, our community, our family - in every aspect of our lives. Samuel’s life is the central thread throughout the film, and I want viewers to get to know 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.
But Samuel is only 7, and including him will probably be more and more challenging. So I also made this film to learn from the experiences of other people with disabilities who can look back on the choices they made - and those their parents made - and how these choices affected their lives. “Including Samuel” also documents the experiences of four other subjects: Keith Jones, Alana Malfy, Nathaniel Orellana, and Emily Huff. The film chronicles the impact of inclusion, not only on them, but also their families, educators, other students, and their communities as a whole.This story really starts 20 years ago. As a newbie staff photographer with the Concord Monitor, I shot a story on Beaver Meadow Elementary School in Concord, one of the first elementary schools in New Hampshire to include kids with disabilities in mainstream classes.
Now Samuel is in second grade at Beaver Meadow, and I think about inclusion every day.
Having Samuel forced me to look at my own prejudice. 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. 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 more about being effective advocates for Samuel. We heard from disability rights advocates like Norman Kunc, who spoke about his “right to be disabled.” Norman said if offered a pill to cure his cerebral palsy, he would not take it. “If suddenly I got cured, I would have to start my identity all over again,” Norman 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 - but just one part - of who he is.My hope is that the film will inspire the public, especially anyone connected to education, to talk about inclusion in a more informed and innovative way. And help them get to know Samuel at the same time.
Making this film has helped me picture the full life we want and expect for Samuel. We have a supportive network of teachers, therapists, relatives and friends who help us work towards that vision 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. And it came with a lot 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 love? Will he get a job that he likes?
I don’t know the answers to those questions right now. But I know that Samuel loves life. He loves to laugh and he loves the Red Sox. He wants to keep up with his brother, and be a part of everything that we do. He will teach a lot of people, which is good because the world has a lot to learn.
For information about “Including Samuel,” and to sign up for updates about the film, go to www.includingsamuel.com.Dan Habib, a University of Michigan graduate, is the photography editor of the Concord (NH) Monitor. In 2006 he was named the national Photography Editor of the Year for papers under 100,000 circulation, and he has been named New Hampshire Photographer of the Year six times. His freelance work has appeared in numerous publications, including Time, Newsweek, Yankee, Life, Boston Magazine, Mother Jones and the New York Times. He has been a judge of Pictures of the Year, Best of Photojournalism and is a member of the White House News Photographer’s Association, and is on the visiting faculty of the Poynter Institute and the Atlanta Seminar.