Including Samuel

By Harry van Versendaal

Big shocks change perceptions. Shortly after he became a father for the second time, New Hampshire resident Dan Habib falsely received a near-death diagnosis for his newborn child, Samuel. No surprise, little seemed the same after that.

Samuel, now 11, was eventually found to suffer from cerebral palsy, a neurological disorder that makes it very difficult for him to control his muscles. Apart from being a very supportive father, or maybe because of it, Habib, a professional photojournalist, reacted to the news by doing what he knows best. He made a film about the family’s efforts to include their mobility-challenged son in every aspect of life — including a regular school.

The result is a 58-minute documentary advocating the merits of inclusive education, i.e. incorporating children with disabilities in typical schools and classrooms. “Including Samuel,” which has already been screened on a number of national television networks, at universities as well as in theaters across the United States, will be shown next week at the “How I Am: Challenging Perceptions” section of the Thessaloniki Documentary Festival.

“Samuel brought the disability rights movement into our own home,” Habib said in an interview with Kathimerini English Edition.

Apart from providing snapshots of Samuel’s experiences over a span of four years, the film also features enlightening interviews with teachers, pupils, therapists and parents. Habib does not shy from the hard stuff. Including Samuel is a process that involves small, everyday triumphs as well as painfully sobering setbacks. But the overall message comes across strong: Inclusive education is worth striving for.

A beaming boy with emphatic eyes, Samuel moves around on a power-assist wheelchair and his speech is labored. He loves baseball and, like many kids of his age, wants to become an astronaut.

In spite of the daunting challenges for everyone involved, Habib never tires to point out that inclusive education is not a zero-sum equation. “Samuel will never tie his shoes or make a sandwich,” he said. “But people have told me he’s made a bigger impact on them that anyone else they’ve ever met in their life.”

How did you get the idea to make this documentary?

When Samuel was 3, he got very sick: He had a tonsillectomy and aspirated blood and developed pneumonia. I’d started taking some photos in the hospital and his doctor knew I was a photojournalist and said, “Why not tell the story of what it’s like to be the parent of a child with a disability?” It was cathartic — to have something to do other than worry. And then I was showing my still photographs to a group of high school students and they said, “We like your pictures, but without seeing video we can’t connect.” That’s when I started to do a film.

What did you aspire to achieve with this film? What has been the reception of the movie so far?

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 Samuel at the same time.

By honestly portraying a story I had intimate access to — our own – I hoped that Samuel would open hearts and minds to see a larger truth: disability is a natural part of the diversity of our society.

When I was making it, my public hope was that it would have a big impact in New Hampshire, and my secret hope was that it would have an impact nationally. The impact has far exceeded anything I hoped for. It’s been broadcast on national public television, shown at film festivals around the world and translated into 17 languages. I’ve given over 200 presentations in 30 states and several countries.

“Including Samuel” is sparking action around disability rights and inclusion from Miami to Maui and Australia to Iraq. The DVD and viewers’ guide are being used in thousands of hospitals, schools, nonprofits, parent groups and state agencies to spark system change in communities nationally and internationally. It’s been an amazing journey.

What were your main challenges in shooting this film?

Making this film forced me to look at my own prejudices. Before I had Samuel, 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 if that how the world sees Samuel.

Also, I really work hard in the film and my presentations not to blame teachers. A lot of teachers, once they try inclusion, are astounded that it’s not as hard as they think it’s going to be and they believe they become better teachers as a result. Some teachers have told me this is the most rewarding experience they’ve had. But it only happens with supportive leadership, so that if a teacher is struggling, they get the training or supports they need. Universal Design for Learning curriculum and technology are important.

Lastly, I continually had to decide when to pick up the camera and film, and when to pick up a baseball mitt and “just be Dad.”

What has been the impact of the whole experience on your family and you personally?

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 toward 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 NASCAR racing. He’s determined to keep up with his brother and to be a part of everything that we do.

Has your experience over the years strengthened or shifted your views on inclusive education?

Our belief in inclusive education grows stronger all the time. When we thought about what we hoped for Samuel, it was that that he’d be a participating and fully welcomed member of our community. That meant attending his local school.

From a personal point of view, school is the hub of our community. If the school is truly welcoming, as they should be to every neighborhood child, then a child can be successful in any environment with the right supports, which is what the law says in the US.

Attending the local school has a major social impact. Because Samuel goes to school with his friends, they’re over at our house every day, they know his DynaVox voice device, they know he plays baseball, they know he loves NASCAR and dinosaurs and volcanoes. He’s not the kid in the wheelchair. Everybody knows him and they talk to him and with him.

From an educational perspective, every piece of research we’ve been able to find shows better academic achievement for kids in inclusive settings. And we’re seeing that for kids without disabilities as well. At the University of Wisconsin, they’re working on a study that shows that kids without disabilities become much more engaged in the curriculum and retain more when they’re working in partnership with kids who need some support or mentoring. They also find behavior is better because kids become more patient and compassionate. When you’re in a truly diverse environment — not just ethnicities, but socioeconomic backgrounds and abilities — that’s how you develop social and emotional skills.

When I talk to audiences I ask them to think back to when they were at school: “What played a greater role in who you are as a person today — relationships or academics?” One-hundred percent say relationships. That’s a good thing to remind educators. A lot of school is about social-emotional development.

I’ve learned inclusion usually succeeds — not necessarily because of money or technology, although they help — but because of leadership from the top administrators in a district and attitude. And the attitude being that all kids deserve to be in a general education classroom and can benefit from it — and that all kids can achieve. It’s an amazing thing how many educators don’t believe that — how many teachers in regular ed and special ed don’t have high expectations for kids with disabilities. When inclusion doesn’t work, we blame it on the kids. It’s because of this kid’s particular qualities. In the US, the law is that you are in the least restrictive environment with the proper support.

You show me any kid who you say can’t be included, and I’ll show you a kid with similar characteristics being included somewhere else. It’s about the environment, not the kid.

I believe life skills are best learned when a kid is living life with his or her peers. You can’t sit and teach a kid life skills in an artificial environment. If we’re focused on getting a kid to tie his shoes and brush his teeth, we’re placing the bar too low. Samuel will never tie his shoes or make a sandwich, but people have told me he’s made a bigger impact on them than anyone else they’ve ever met in their life.

What is the situation now in the United States? Is there a momentum toward inclusive educational practices?

Definitely. Every year more and more children are fully included in typical schools and classrooms, and the current leadership in Washington seems supportive of this momentum. I think there will come a time when we look back on the segregation of kids with disabilities like we do now on segregation by race. It doesn’t make any sense. It’s very strange and artificial. Some people ask me, “’What are the limits of inclusion?” We haven’t even tested that theory yet. We’re doing such a bad job of it in most places in the US and internationally. Parents have to make tough choices. They’re often forced to accept a segregated setting. I’ve never met a parent who said, “My first choice is not to have my child be part of the community school.”

How is Samuel doing at the moment?

He’s 11 and in the 5th grade at the same school. Throughout elementary school, inclusion has worked really well for Samuel. Samuel is doing theater. One of his friends suggested that Samuel would be able to drum. So he’s doing drumming in music at school. He played baseball in the spring and went skiing this winter. He’s done karate and judo and rides an adapted bike. He loves video games, PlayStation and YouTube. In most ways, he’s a pretty typical 11-year-old.

For more information about the movie visit http://www.includingsamuel.com

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