Last week, I had the opportunity to interview Dan Habib, a former photojournalist who made a documentary about his son Samuel, now 8, who has cerebral palsy, and his family's efforts to ensure Samuel is fully included in school and home life. At right, you can see Dan and Samuel in a 2006 tee-ball game; Samuel is using a special walker to get around the bases.
From humble beginnings, Including Samuel has now been viewed by packed crowds around the country since its release last fall. The film bypasses some of the ponderous language that surrounds special education, and boils the issue down to its essentials: What is the right thing to do for this one child?
And, though the movie is just an hour long, Habib includes other voices, like a student for whom the regular school environment was not the right choice, and a teacher who candidly said that she felt that she lacked the right training to have students with disabilities in her classroom.
I wrote a column for Education Week about a nonprofit organization that is translating the documentary into Arabic to be shown to youth with disabilities in Iraq. But I also wanted to share some of Habib's thoughts on inclusion and education.
What are your feelings about full inclusion?
I feel full inclusion is vital not only for Samuel but for our society. Several years ago, my wife, Betsy, and I attended 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.
I want people to get to know Samuel for all his wonderful and complex personality traits--not just as "the kid in the wheelchair." That will happen only if Samuel is fully included in our school, community--in everything we do. My hope is that this film will inspire the public, especially anyone connected to education, to talk about inclusion in a more informed and innovative way.
In the film, inclusion is handled differently by everyone who encounters it. Do you think this is a good thing, or should the process be more standardized?
Today, inclusion is still happening inconsistently throughout the country. It varies state to state, town to town and classroom to classroom.
Joe Petner of the Haggerty School (featured in the film) says we should not have to reinvent inclusion every time we try it; that for inclusion to be successful, it has to be a transferable model, not dependent on extraordinary leadership or funding. He says the most important factor in making inclusion work well is a community's commitment to the spirit of inclusion; the details will fall into place if that overall commitment is there. Administrators need to set the tone that inclusion is always the preferred path--it is written that way in [the Individuals with Disabilities in Education Act].
But inclusion can only work well if teachers and students have the proper supports in place to do it well. That includes training, technology, well-trained paraprofessionals, and planning time.
What kind of response did you get from Samuel's educators when you expressed your desire for him to be fully included in school life? Did you find universal acceptance or did it require a bit of "pushing" on the part of your family?
We don't expect Samuel's teachers to have all the answers. And we know it won't always go smoothly. We just want them to say, "let's work together to figure this out." So far, all of Samuel's teachers have really wanted to make it work, and they understood that inclusion is the right thing for all children. Like us, they believe all kids benefit from inclusion, because it teaches them that the real world has people of all abilities, and that disability is part of the natural diversity of our society. And they have told us that it has made them better teachers, because they've honed the skills they need to reach every child.
When we pushed to have Samuel's therapy (physical, occupational, speech) integrated into the class activities so that Samuel would not be pulled out of the classroom, some of the therapists were surprised, but not resistant. They said, "We haven't done that before, but we can try." That is what we ask for: that they try to the best of their ability..
I empathize with teachers and specialists that don't have support from the administrators. That makes it almost impossible to do inclusion well.
3-year-old Samuel with a friend in his preschool classroom.
What kind of advice would you give to parents so that they can also learn how to advocate appropriately for their children?
First, decide what you want most for your child. Then map out a path to get there. We have a magnet on our refrigerator that says, "The purpose of our lives is to be happy." We believe that Samuel's happiness is directly tied to his acceptance and involvement in our community. And the school is the hub of the community. If he is not fully included there, how can he be fully included in community? Because the neighborhood kids go to school with Samuel, they know the subtle ways he communicates, and they feel comfortable playing with him in our neighborhood. That makes him happy and feel accepted by his peers. That builds up his self-esteem, which all kids need--especially those with disabilities.
I'd also tell parents that the IEP (individualized education program) is a very powerful legal document. Play an active role in crafting that document so that it contains everything you believe sets up your child--and his/her teachers and therapists--for success in school. Then, stay involved to make sure the IEP is implemented.
We try hard to be team players with the school staff, and avoid antagonist relationships whenever possible. We try to get involved in other volunteer aspects of our school. But a parent recently sat next to me on a panel and said, "I will never apologize for advocating for my child. I get one shot at doing this right." That was powerful.
What advice would you offer principals and teachers when they are working with parents of students with disabilities? I hear so often about "pushy" parents or uncaring staff members, and it just seems like there has to be a way to get everyone on the same page.
Creating an IEP can be a traumatic and emotional process for parents, because it details all of the obstacles your child faces. Be empathetic to the pain this process can cause a parent.
Come into the relationship as a sincere problem-solver. Show that you see the child as a child, and not a case to manage. Get to know that child's strengths and personality traits. Make it clear that you presume competence, regardless of that child's "label." If you show that you genuinely want to include and teach the child, most parents will respond with a collaborative approach.
As the child gets older, offer to involve him/her in the IEP process. Samuel is almost 9 and we expect to have him attending some or all IEP meetings before long (though he would probably rather be hanging out with his friends). Most of what makes for a successful parent/school relationship is not about money or technology. It is about mutual respect, communication and a shared belief in the child.
And it never hurts when we bring cookies to the IEP meeting.