Thursday, November 4, 2010

Inclusion is 'about the environment, not the kid'

Dan Habib (second from right) is a photojournalist and creator of Including Samuel, a documentary that chronicles his family’s efforts to include his son Samuel (second from left), who has cerebral palsy, in every part of their lives. The film also captures the experiences of four other children and adults with disabilities and their families. I talked with Dan about what he learned about inclusion during filming. And on a related note, check out this World Radio Switzerland story today: Debate sparked on disabled children in regular classrooms.

BLOOM: How did the film Including Samuel come to be?

Dan Habib: When Samuel was about two, my wife went through the NH Leadership Series at the University of New Hampshire's Institute on Disability. The IOD is one of 67 centres for disability studies around the U.S. They brought in national experts and self-advocates. She realized it was an incredible way to learn about the education, health-care and legal systems. We wanted to be on the same page, so I took the program and it had a profound effect on me and how I saw Samuel's future. It gave me a vision for his future beyond what I could have imagined. Suddenly, instead of thinking of all the limitations, I was thinking about possibilities. I was meeting role models who were doing incredible things in the world. It got me thinking about inclusion. When Samuel was three, 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 a 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 photography 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. I did it while I was still a full-time photo editor. After it came out and gained momentum I pitched the idea of a job as a filmmaker in residence to the Institute.

BLOOM: Why does inclusion matter?

Dan Habib: From a personal point of view, school is the hub of our community. 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. If the school is truly welcoming, as they should be to every neighbourhood child, then a child can be successful in any environment with the right supports, which is what the law says in the U.S. 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 behaviour is better because kids become more patient and compassionate. When you're in a truly diverse environment – not just ethnicities, but socio-economic 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.

BLOOM: What did you personally learn about inclusion while working on the film?

Dan Habib: 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 U.S., the law is that you are in the least restrictive environment with the proper supports. 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. Universal design is curriculum designed for all kinds of learners, whether they learn best from auditory, experiential or tactile experiences, or through reading. Universal design uses multi-media and technology like smart boards. A complaint of teachers is that they have to constantly modify curriculum, but universal-design curriculum comes in already modified. And even kids who have one learning style learn better when they see the information presented in a couple of different ways.

BLOOM: Is inclusion more possible for kids with certain types of disabilities?

Dan Habib: 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.

BLOOM: I'm frustrated that there are no options for my son other than a life-skills program, when I feel he could still be making academic gains.

Dan Habib: I believe life skills are best learned when a kid is living life with 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 aiming the bar 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. I heard Amanda Baggs, the autism rights advocate, in an interview and she said: "I can't tie my shoes, but I get paid thousands of dollars to give a speech. I can pay someone else to tie my shoes." That said, it can be scary for some parents to include their child in a regular-ed classroom. They may fear that their child will be bullied or fall behind. Or they’re afraid their child may lose the supports they need to succeed. It’s really important to understand the parents' perspective, and talk about what it's like for a parent to navigate the system and try to advocate for their child.

BLOOM: Is inclusion harder for children with intellectual disabilities?

Dan Habib: Inclusion is possible for everyone, but our society does have stigmas around certain types of disabilities. If a child has an intellectual disability there are lower expectations for that child. If a child has behavioural or emotional issues they're seen as scary or dangerous. A child with a physical disability may not be able to get into his or her school. I think there's a particular stigma against kids who are non-verbal. In our society, if someone can't talk, we associate them with having less intelligence, lower our expectations and don't work as hard to include them.

BLOOM: Is inclusion easier in the younger years?

Dan Habib: Generally people see inclusion becoming more difficult as the curriculum becomes more demanding. But 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. 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. 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."

BLOOM: Are there times when a specialized, segregated program makes more sense?

Dan Habib: If a school is very supportive and inclusion is still not working, there are a couple of things to keep in mind. One, just because a child leaves a school for a certain amount of time, doesn't mean they can't come back. And two, there are alternative settings – not typical mainstream classrooms but not self-contained classes. Many kids can benefit from more creative, alternative settings. There are times when there's a level of crisis in a child's life that makes inclusion difficult – a mental-health crisis or physical crisis – so we need some specialized programs. But there are far too many of them.

BLOOM: What impact did you hope your film would have?

Dan Habib: 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 Canada. It's been an amazing journey.

BLOOM: Is your work at the Institute focused on promoting Including Samuel – or are you working on a new film?

Dan Habib: My work is all film-based. I'm still doing a lot of work with including Samuel – about two-thirds of my time. But while I was making that film, people kept saying "what about kids with emotional and behavioural challenges?" I'm working on a new film that will be out next year that looks at inclusion for these children. I've followed one young woman over the last year and documented her life and how she made her way through her senior year with the support of a lot of people after having lived homeless with a drug-addicted mother and selling drugs herself.

BLOOM: What advice would you give other parents as to how to pursue inclusion?

Dan Habib: The first thing is having a vision for your child. What do you want for your child? We want our child to be happy, to be a full member of the community, to learn a lot and to go to college, and that kept pointing to him being in a regular local school. It's about being involved in your kid's life and working hard to be a teammate with the school – to be a problem-solver and not to be antagonistic, but not to be a pushover. You need to be the squeaky wheel and be forceful, and you need to know the law as well as you can. One thing we've always done is tell teachers: "Don't be afraid to fail sometimes. We'd much rather you try and fail." We don't expect our teachers to be perfect.

BLOOM: Tell me a bit about Samuel now.

Dan Habib: He's 10 and in the 5th grade at the same school. Throughout elementary school, inclusion has worked really well for Samuel. It's not perfect, of course, but we've had a great time with a very problem-solving approach. We've had a lot of communication by e-mail and notebooks and meetings. We're all on the same page and it's a matter of working together to figure things out. Challenges have been logistical, but never out of ill intent. Samuel’s doing theatre. One of his friends suggested that Samuel would be able to drum. So he's doing drumming in music at school – whatever that may look like. He played baseball in the spring and will go 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 10-year-old.


It always depresses me to read such beautiful statements about inclusion, mainly because I've never been able to have it for my own daughter who is now fifteen. It's one of the greatest (and only) regrets I have that I didn't fight harder to have her included. While she is in a special day class in a normal high school, it's just not the same. I wish I had started earlier. Thank you for this wonderful interview.

Elizabeth -- I felt like crying after doing this interview, and racing out to "rescue" my son from segregation. But I know from everything that's been drilled in to me for years that they are not willing to offer us another option. It IS heartbreaking.

Don't beat yourselves up for not "fighting hard enough." We have too many school systems entrenched in segregated programs and the single screams of one family won't be enough to change that system...not in time for their own child, anyway. Instead, use your energy and creativity to scour your community for other opportunities that your kids can participate in and experience success. Are there volunteer programs, recreation and fitness options, 4-H, Scouting, continuing education classes, hobby and interest clubs, faith-based groups, etc.

My daughter (who has benefited exponentially from an inclusive school experience and is now a senior in high school) has volunteered at our local hospital, a preschool, our children's museum, a homeless shelter, a riding stable, and more. She has taken community art and recreation classes where she has met both youth and adults who have become friends. She did community summer rec programs and a Jewish-sponsored summer camp (we aren't Jewish, but it was incredibly inclusive in every way) all through her elementary and middle school years and had a blast. She also spent a summer volunteering at Camp Shalom after she aged out as a camper.

Dan's own sons are active in baseball and other community activities. School is a huge part of kids' days, but there are lots of hours outside school (especially in summer) when your kids can get involved in other activities. And ultimately they need to learn to be part of their communities now, while they are still young. Participating in these things can introduce them to whole new sets of people who can support and welcome them into activities long into adulthood. We know several young adults with dev. disabilities who were active in Scouts and 4-H as youth and now are volunteer leaders (and probably will be for life).

This could be a recurring them, I like the interview, have seen the trailer for the movie which I thought was absolutely great, but - I sure feel awful for not having tried harder with the school system here.

OK, Dimitri never would have been included, the system doesn't allow for it in Greece (with his diagnosis), but should I have been more insistent on a public school placement rather than opting for private?

The good thing about reading such stories is that it gives me some hope and "revives" me a little. It reminds me not become to numb to and accepting of, the current situation.