Time to refuel your tank

Including Samuel

By Dan Habib

When Samuel was four years old, I sat at his hospital bedside as he lay in a medically-induced coma. He 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.

Samuel is now seven. He has cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair and it is difficult for him to talk. "Including Samuel", the 58-minute documentary film his doctor inspired me to create, is being released nationally this fall.

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, 11, 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.

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. I began to wonder: is that how the world sees Samuel?

"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 through the film, and I want 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.

My experience is that parents of children with disabilities face a different balancing act. One big struggle is balancing time spent supporting a child with a disability vs. the family's other child(ren). Others include marshaling the time, energy and financial resources needed to manage a child's medical care and therapy, and the scarce resources left for yourself, your relationship with your spouse, and your work.

Samuel is only seven, and including him will probably be more and more challenging as he grows up. 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 their parents made, and how these choices affected their lives. "Including Samuel" also documents the experiences of Keith Jones, Alana Malfy, Nathaniel Orellana, and Emily Huff. The film chronicles the impact inclusion has not only on them, but also their families, educators, other students, and their communities as a whole.

Samuel brought the disability rights movement into our living room. Every day it brings new questions and explodes traditional conceptions of work/family balance. As Samuel grows up, what can we do to make sure that people see cerebral palsy as only one part of who he is? Can we continue to fully include him as he goes to middle and high school? What about the times when inclusion has to take a back seat, as Samuel misses weeks of school to get through another health crisis?

I don't know the answers to those questions right now. But I know that Samuel loves life. He's got a great smile and he's a die-hard Red Sox fan. 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.

My hope over time is that the film will inspire the public, especially anyone connected to education, to work towards inclusion in a more informed, balanced and innovative way. My hope today is that you will tell me about your perspective on, or experience with, "balancing" your life with a disability.