Thoughts on Inclusion

Back when I was in elementary school, full inclusion was yet to be introduced. People with moderate to severe intellectual disabilities were sent to a segregated school in another town. They were only around people that were just like them.

The other kids, the ones with a mild delay were sent to "resource" for parts of the day. I still vividly remember the other kids saying "RESOURCE" in their best "retarded" voice as the kids walked down the hall for their one on one instruction. This was our reality. This was all we knew of people with disabilities.

I rarely saw anyone with a severe disability and if I did, like in the mall, I'd walk past, avoiding eye contact. I didn't know what they would do if I actually looked at them, or heaven forbid, smiled at them. I was scared of the unknown.

This was my reality until my sophomore year of college. I really thought it would be fun to work at a summer camp for the summer. Getting paid to swim, fish, ride go carts, have bon fires, hay rides - what could be easier? I really didn't pay attention to the fact that this camp was for children and adults with disabilities but hey, there was a girl in my class in high school that was in a wheelchair. No big deal.

enter CULTURE SHOCK

My parents dropped me off at this camp in Ohio; I didn't know a soul. Training began. They taught us how to change adult diapers, how to shower someone who couldn't stand, how to communicate with someone who couldn't talk, how to feed a grown woman, how to facilitate FUN for people who would otherwise be sitting in a wheelchair or lying in bed, staring at TV show they cared nothing about. OK, I thought, I can handle this.

Then, the next day they had us go to a residential center for people with disabilities. I immediately reverted back to scared and in shock mode (remember that Shaker?). I stood back, not talking. Shaker, our camp director, came over to me and said "just go talk to them like you'd talk to anyone else". "But they can't talk back," I replied. "That doesn't mean they can't communicate" he said. This was my job; I was stuck here, I might as well give it try. From afar, I spotted a young woman, probably in her 20's. She was standing up rocking front to back, a diaper was peeking out from her pants and she was vocalizing but not saying any words. I went over to her and said timidly "hi, how are you?" She looked briefly at me but kept rocking. I thought about what Shaker said and knew there must be another way to communicate. I stood in front of her, grabbed her hand, looked into her eyes and said "I'm Sarah. How are you today?" She gave me the biggest smile and then the biggest hug I've ever received (ok it hurt a little) but WOW! I made a connection with someone that day and we were best buds the rest of the time there. She completed the tour with me, not leaving my side.

That summer changed my life. I knew what God had created me to do, what my passion was.

Most people in this world will not get that experience, nor will they choose that experience, especially when they are adults. I want my daughter to experience now, the joy I felt when I was 20. I will create some of these experiences for her but much of her life experience takes place at school and she needs to learn now how amazing it is to have friends of all abilities. I want her to grow to be an adult that smiles and says "hi" to the lady at the mall that is in a wheelchair and not be scared. I want her to be the person that sits next to the man at church that can be loud on occsassion and be the person that doesn't turn and glare at him when he involuntarily makes a noise or gets excited about a song. The person who instead, gives him a warm smile, and grabs his deformed, drooled on hand that he cannot lift and shakes it and says "I'm glad you're here."

I want my son to be a man who feels accepted and who has friends of all abilities. I want him to be seen as "one of the guys" not the kid who goes to "RESOURCE". I want him to live on his own, with his wife or with some friends, not in an ICF/MR or a state hospital. Why not prepare him and his classmates for that now? I want him to learn from his classmates and his classmates to learn from him.

By not including, we are denying our kids (those with and without disabilities) access to the beauty that each have to offer.


Someone from my Down syndrome inclusion group shared this with me. A sister created this beautiful tribute to her brother (make sure you pause the blog music first):

http://www.youtube.com/watch?v=MO911lWVGpQ