When I started this blog over a year ago, I had only the faintest idea of what I wanted it to be. As always, it was much easier to define what it was not and I was very clear that I never wanted it to be a blog about disability, especially mine. [In the grand scheme of things, asthma isn't much of a disability... unless you can't breathe... then it's all that.] Perhaps I would have felt differently if I'd had asthma since childhood or if the adult onset crappola hadn't hit me like a ton of inhalers. Based on my experiences, my perspective going in was that so much of my life had NOT been about asthma, I didn't want to swing the pendulum the other way and have the blog ONLY be about living with asthma. There's so much more to life... you know?
As well, I didn't have any serious intention of discussing my daughter's disability in any detail, and certainly not my work at a disability agency. The fact that they have come up, I think is due to two things: volume of posts and my passionate response to current events. This post falls into the latter catagory...
Last week, Tammy posted about an experience her daughter had in school. It dealt with kids with disabilities being disruptive both in class and in the choir program. Tammy discussed it and asked her readers what they thought. She got a lot of feedback regarding kids with disabilities being mainstreamed into standard classes. Some of the comments I agreed with and some not so much. In closing, she asked me what I thought parents should be telling their children about accepting kids with disabilities. It's a tough subject for me to tackle but it's impossible not to address it. Bear with me as I'll need to share some stuff in order to make my case.
Not so long ago, kids with disabilities weren't "mainstreamed"... integrated into standard classrooms to learn along side other children. If they weren't institutionalized, they would have lived at home and if able, attended state schools for the disabled. Their socialization would have been hit and miss during those developmental years and they often would have been held to much lower standards because no one expected much. We have many clients with this background at my agency.
Even 15 years ago, after my daughter finished mobility therapy, attended speech therapy, motor skills therapy and all the other little therapies, the county (who hadn't paid for any of her therapies) wanted her to attend a "special preschool" to prepare her for special ed kindergarten. I turned them down, because after viewing it, I didn't think she'd learn the thing she needed most, social skills (adapting to large groups). And I knew if she didn't at least grow accustomed to normal kids and appropriate social situations, things were going to be difficult for her. Instead I enrolled her in a neighbor's home preschool where she'd be exposed to kids her age and learn to interact at their level. Little did I know that was my first act of "mainstreaming".
As she entered school, what I learned about mainstreaming is that school programs are set up to include children with disabilities as much as possible. At least in my district, there is not funding for this kind of disability and that kind of learning. There are few special ed teachers (sometimes none) and kids are taken out of class for specialized learning only as needed and that creates three things: a stressed out home room teacher who doesn't understand the special needs of that child, frustrated classmates who don't understand the kid with the disability and a stressed out kid with a disability who does not know how to work with that teacher and has little chance of fitting in with their classmates.
These conflicts continue throughout school... insert arguments with the district special ed manager, multiple instances of me in the classroom coaching the teacher as well as talking with the principle when my daughter assaulted on the playground because she's "different". As my daughter approaches graduation I can readily understand both sides. The teachers and classmates are frustrated by someone who learns and behaves differently and the child with a disability who, no matter how hard they try, cannot seem to get the hang of their peers, the work or how to interact.
Ironically, as badly as I've painted "Inclusion" and "mainstreaming", I'm still an advocate. Very simply, if there is no inclusion, then you have segregation. These kids who 'aren't right' will go over here and do their thing and these kids who 'are okay' don't have to see or think about them. By including kids with disabilities in mainstream classrooms, both sides have something to contribute to the other. The normal kids can learn patience, compassion and acceptance. The challenged kids can learn adaptation, socialization and belonging. And it's important that these interactions take place.
Look ahead to the adult years. If you get rid of inclusion and divide the populations, the kids that were segregated in pre school, grade school and high school leave the chute with few skills to help them adapt to the adult world. Their future, likely either institutionalization (depending on their disability), working in a sheltered workshop with other disabled folk away from society, or sitting at home for the rest of their lives watching TV. This is the reality of what we have now in our 40-50 year old clients with disabilities. That and a 70% unemployment rate. What a difference inclusion could have made in their lives...
As for answering the question of what I'd tell kids who are in class with kids with disabilities... I'd tell them the truth. That those kids not only learn differently, but that the classroom experience is vital to them being able to function at their peak as an adult. I'd talk to them about compassion and and acceptance because we're all different. And the big guns? That separating people because they're different, isn't right. Oh, and that everyone wants to belong...