Inclusion: The dream

A number of stories about inclusion have crossed my desk recently.

Filmmaker Dan Habib contacted me about his documentary Including Samuel. It's a beautiful account of how Dan's family strives to have his son Samuel, who has cerebral palsy, included in a regular classroom and community activities. We also meet other children and adults to hear about their experiences with neighbourhood and "special" or segregated schooling. Dan has agreed to do an interview with us about what he's learned as Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.

Including Samuel was hard for me to watch because it reminded me of all of the dreams I once held for having my son Ben (centre above) included in a school that was a mix of kids with and without disabilities. Over the years, we've had experience with a school for kids with physical disability, a self-contained classroom in a regular school, inclusion in an alternative school with mixed-grade classes, a school for the deaf, and now a high school for students with mild intellectual disability.

In Ben's early years, inclusion was promoted but wasn't backed up with the resources needed to allow a child to be a true participant in the class. Once we reached middle school, school board staff didn't even "pretend" that inclusion existed for kids with developmental or multiple disabilities. In a meeting to discuss my son's high-school placement I asked why all efforts for inclusion puttered out after elementary school. "So is Ben going to sit through a regular high school physics class?" I was asked.

How could I respond other than "no."

At that time we visited a self-contained class -- a model program, we were told -- for students with developmental disabilities in a local high school.

It was a windowless room in the basement, accessed from outside through the janitor's room. When we got lost finding it, none of the regular teachers we asked knew it existed. The high school was a noisy arts school in an old building with terrible accoustics, even though some of the kids in the self-contained class had hearing loss. I left seething at the injustice of these students being hidden away in a dark basement.

Yesterday, Lianna, at Life with Gabriel, posted a fascinating video about inclusion for people with developmental disabilities in Alberta's colleges and universities. I haven't had a chance to watch all of it, but it appears that all of the students are able to communicate verbally. I wonder about the opportunities for students with more complex disabilities.

Last year I interviewed Richard Ellenson, a New York ad executive who brought a voice device to market because he was so frustrated with the technology available to his son Tom. Richard and his family were the focus of a 2004 New York Times Magazine article – The Lessons of Classroom 506 – about inclusion.

"The thing I find most tragic is that we as a society have been unable to find effective inclusionary environments," Richard told me. "We haven't found an appropriate teaching model for children of different abilities, so students with special needs are often excluded from a general curriculum and put in a separate environment. Yet in every high school, one kid is going to go to Harvard and one is going to comunity college. Their experience is not so different from that of people who are typical or have special needs and yet we don't make that distinction."

Yesterday I saw this article in the New York Times about an investigation that's revealed 238 deaths of children with intellectual disabilities in state-run homes in Bulgaria over the last 10 years. Three-fourths of them were ruled avoidable. They include 84 from physical deterioration caused by neglect; 36 from exposure to cold or long-term immobility; 31 from malnutrition; 13 from infections caused by poor hygiene; and six from accidents.

"It's allowed to happen because these people don't count as people," said Judith Klein, director of the Open Society Mental Health Initiative in Budapest. "The government policy toward these children has been criminal," said Deputy Minister Valentina Simeonova, of the Ministry of Labor and Social Policy that oversees the homes.

And then I can't help looking at the photo of Ben at camp above this summer, and wondering: If inclusion can happen there, why not elsewhere?