Wednesday, May 23, 2007

What is inclusion?

What does it mean to be in an inclusive or community environment?

I think of some classrooms I've seen, where there might be 15 typical kids and one or two with "special needs." The teacher is confused about how to handle the child, the other kids get upset that the child with special needs gets different privileges ("why does X get to go sit on the beanbags?"). When I was a para in this sort of classroom, a lot of my effort went to making the integration process happen, not helping the child gain meaningful things from the lesson. (i.e. making sure there were no tantrums so that the social studies teacher wouldn't kick us out).

Community based intervention is the same way -- I feel like that I often go "crash the normal party" with a teenager with autism or who ever I am working with. We would go to the park, he'd run back and forth on his play structure or on the swings and scare the preschoolers. That isn't really his peer group. This isn't really social interaction for him.

I sometimes feel like that being the one person with a serious developmental disability in a crowd is more for the typical people in the crowd and not for the person with the disability. I've explained autism to a lot of people in the park.

I think about the respite retreats I've been on for my work -- 15 or so people with developmental disabilities, 9 or so staff members. The retreaters are ages 4 and up, with a concentration of young adults. The staff is also heavily made up of young adults. There are some people who would call this a segregated environment, and maybe it is. Everyone has a disability. There are some who would shudder at this. Segregation. Warehousing. etc.

But my boss is amazingly awesome. EVERYONE is expected to be on their best behavior and do what he or she is capable of. There is no hierarchy of those with more cognitive involvement vs those with more physical involvement. Everyone just works together. Some of the young adults with mild impairments are put to work loading and unloading the van, or watching the younger retreaters. People are asked to fetch things for others. No mercy is shown anyone at the Playstation 2. The young teenage boys squabble over who gets to push the wheelchairs and tease the young staff members mercilessly.

I remember watching everyone playing at the tennis courts the last retreat. Two staff members and a young man in an electric wheelchair played basketball. A young adult pitches a wiffle ball to a teenager in a wheelchair. The guy in his late 30s with autism sings and dribbles a ball. A young adult and staff member help two of the younger kids blow bubbles. A bubble hits the young man in a wheelchair who is non-verbal and non-mobile and he squeals. A respite retreat seems like segregation to some people, but when I think of that moment at the tennis court, I realized that it was integration at its best. Everyone was equally valued. The people with less severe disabilities do not think they are better than the people with more. I love M. because she has that same attitude.

I've met with people on the borderline of intellectual disability who are angry they've been grouped with people with lower skills. I've met parents who have fear and hate toward other people with disabilities who are lower functioning than their kids, afraid that the lower IQ scores will rub off on their kids if they have to sit together.

When it comes down to it, the rest of the world doesn't care who is first chair violin and who is second. They don't discriminate in discriminating. I understand how parents want the best for their children, but the point shouldn't be that their child is too good for the treatment that other children are getting. The point should be that all children have the right to appropriate placement, no matter what that placement is. You can argue your child would learn better in a typical classroom, but it breaks my heart to hear parents argue this point by pointing out what the children in the segregated classroom aren't capable of.

Inclusive settings are where everyone is valued for his or her contributions and is expected to make contributions. I believe it has nothing to do with the ratio of people with disabilities to people without.

In fact, when I do a training soon, I'm going to present that my definition of institutionalization is to live in an environment where one is not allowed or expected to participate in the choices and responsibilities of daily living. Institutions are not about buildings or staff ratios. A community based waiver can be an institution. A good large living situation can not be. Just as a weekend camp of people with disabilities can be more inclusive than putting one kid with a disability in a room full of people without.

It's all attitude.
Not numbers.

Unfortunately, attitude does not show up on pie charts.

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