MELISSA BLOCK, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Melissa Block.
MICHELE NORRIS, host:
And I'm Michele Norris.
When Dan Habib discovered that his youngest son has cerebral palsy, he decided that he would fight to make sure Samuel lived a full life. Sports, family vacations, Boston Red Sox games with his big brother, and the experience of being in a mainstream classroom despite severe disabilities that confined Samuel to a wheelchair and limited speech. Including Samuel in all aspects of life became a mission for the Habib family. It's also the name of a recent documentary by Samuel's dad, a staff photographer for the Concord Monitor. Samuel is now 7. He has bright eyes, a robust smile and a strong will.
Dan Habib decided to chronicle his son's story about three years ago during a rough patch.
Mr. DAN HABIB (Creator, "Including Samuel"): Samuel is 4 years old. He actually developed some serious health complications from a tonsillectomy, and he developed a severe case of pneumonia. And when we were in the hospital, his neurologist, James Filiano, actually said to me, you should document this. You should take your camera and you should show what it is to have a child with a serious health issue. So, that was when I started taking pictures a little more seriously, and soon after, started integrating video and with the idea of this film project.
NORRIS: Why do you think he wanted you to document that experience?
Mr. HABIB: You know, I think when you have a child with a disability, you kind of join this club that nobody really chooses to join. But it's a situation where parents who have kids with disabilities understand a lot of things about what the day-to-day life is like, the challenges, as well as some of the joyous things that you can anticipate. And I think he wanted me to share that with other people.
NORRIS: In the film, your wife talks about this important turning point.
(Soundbite of documentary "Including Samuel")
Ms. BETSY McNAMARA: For a long time, we would sit around after the kids went to bed and we'd compare notes on how Samuel did. He did better with this today. Oh, he wasn't as good with that today as he was the day before. And I've realized that if I do everything that all the therapists and teachers suggest that I do, then I'm working with him all the time on O.T., on P.T., on speech, on his education, on his stretching. And as I do all of those things every day, then I become his therapist, not his mother. And I just want to be his mother.
NORRIS: She just wants to be his mother.
Mr. HABIB: Yeah. I think we had to get to the point where we weren't just trying to fix Samuel. It's so hard to avoid thinking, I just want to get him to walk. I just want to get him to talk. And we've finally got to the point where we just said, Samuel's our son. He is who he is and we love him for who he is. We don't need to fix him. Of course, we want to support his health. We want to make sure he stays healthy. But if he uses a wheelchair for the rest of his life, that's fine. We just want to make sure he has a happy and fulfilling life.
NORRIS: Was the whole family in the boat on that decision? And also this decision to try to include him in everything that the family does?
Mr. HABIB: You know, one of the people I interviewed for the film, Doug Biklen, who's the dean of education at Syracuse, said, where does inclusion exist full-blown right now in society? His answer is it exists in the family. And a lot of families, inclusion is not an issue. You don't have dinner together, but have one child with a disability sit off on a different table, which is kind of parallel to what happens in a lot of schools. So I think our family has always accepted Samuel as Samuel. And he's a big part of our lives in every way.
NORRIS: You also, in this film, look at the lives of other older people with -living with disabilities. And if you look at that experience, it suggests that the road ahead might be very difficult. How much does that worry you?
Mr. HABIB: Well, it worries us. I mean, things are going well right now and we have no idea what the future will hold. So we're concerned, but we also have learned to really be team players with Samuel's teachers, his therapists and his administrators.
NORRIS: You actually talked to one of the teachers, a teacher, Carol Ward. And she talks about how difficult this experiment is. And in that school, there is one disabled student named Alana Malfy and she requires quite a bit of attention. She can be somewhat disruptive in a classroom setting. And this teacher, Carol Ward, was quite honest. She unburdened herself about just how difficult it can be.
(Soundbite of documentary "Including Samuel")
Ms. CAROL WARD (Teacher): I did not have any formal or informal training to have these students in my class. How am I going to reach the valedictorian and reach Alana at the same time? I don't know how to do that. I'm not even sure I reached the middle of the road this year. I had cried many times about this year. How is it done? I don't want nothing to do like this year.
Mr. HABIB: I didn't want to sugarcoat this issue. And I didn't want to make it simpler than it is. It's a very complicated issue. So by including Carol Ward's interview, I think I was representing the feelings of a lot of teachers. This is really hard. It can be hard to do inclusion well. But I think as a matter of human rights and civil rights and for the benefit of our society, it's the right choice.
NORRIS: You know, schools that are experimenting with inclusion seem to be doing this for all the right reasons. But how can you ensure that they get the right resources? Because in listening to the teachers, particularly in the older grades, they're really struggling with this.
Mr. HABIB: I don't know the answer to that. I don't know that you can ensure it. I think that that is something for our country to decide. You know, is this worth investing in? Is this worth making sure that schools have the resources and the time and the training to do this right? I think it is. But we've got a long way to go. I mean, I think if you look at inclusion nationally, it varies state to state, town to town, school to school and classroom to classroom. Even in my region - New Hampshire's a wonderful state overall for inclusion, but there are some districts where it's not working at all and some districts where it's working really well. And I think, in many cases, it comes from the leadership.
NORRIS: Dan Habib, thank you very much for coming in to talk to us.
Mr. HABIB: Thanks for having me.
NORRIS: That was Dan Habib. His film is called "Including Samuel."
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