Tuesday, May 27, 2014

"It's so sad when people have special needs": Thoughts on Inclusion from the Bus Stop

Not Nico's Actual Bus
"It's so sad when people have special needs."

A caring, sweet, 4th-grader said this to me at the bus stop a few minutes ago. My son and I crossed the street, running and laughing, happy. Then he asked me to go see a dog that was being walked across the grass, I said no, we had to go get in line for the bus, so he said no to me, and then pouted. Nico is really developing his pout lately.

The girl, M, came over and reached out her hands to Nico asking if she could help. He said, passionately, "No!" Then she turned to me and smiled and said, "It's so sad when people have special needs."

It's one of those moments when, as a parent, words fall with a kind of physical force. It's not that they hurt, at least not in this case, but for me my whole body tenses in these kinds of interactions. I know, or I suspect, that I'm hitting a moment in which I might shape language, perception, action, reaction, and more - not just for my son, but for anyone this child interacts with who has special needs, and her friends and family.

If I handle it right, I hope, I might help build a more inclusive society and I might even manage to erode the gap between help and friendship (seriously, follow that link. It's really interesting).

I said, "I don't think having special needs is sad. I think it can be sad when people with special needs don't get the help they need, and even worse when they don't have a good community of friends and family around them."

M. thought about this and said, "I used to help my grandpa. He was in a wheelchair because of the war and his leg."

I replied, "Exactly, and imagine if he didn't have you and your family and his friends not just to help push his chair, but to be his granddaughter, to be his friends, and to make sure he has what he needs. And if our community didn't build wheelchair ramps or automatic doors, so he couldn't have moved around."

She nodded. Then the bus came and I had to get my surly boy onto his feet and onto the bus, which he did with only mild protest, surrounding by his aide and three girls, M, F and H, with G waiting for him on the bus.

I'm not quite satisfied with my answer, but I'll keep working on it.

Two other stories about inclusion and the girls who go to school with my son. And yeah, it's pretty much the girls, a sign of the ways that girls are pushed towards caregiving early, but that's another essay.

I've written about H before, back on the first days of school, when she included herself with Nico in a way that made me weep. She comes over and has playdates sometimes, and while she and my daughter have a beautiful big-sister/little-sister relationship, she's never satisfied just playing with Ellie for all my daughter provides her with an imaginative hyperverbal playmate for their games. Instead, every few minutes, she breaks away to go find Nico and see if she can bring him in. Sometimes, it works. On Sunday, the three kids sat huddled in a corner of couch passing two ipads around, giggling and happy. It was so powerfully inclusive, especially given that Nico had refused to participate in my daughter's birthday party earlier that day (too many kids, too loud, too hot).

F, on the other hand, lives across the street, but I haven't really processed her relationship with Nico. She's quiet, or at least a bunch of the other neighborhood kids are really loud. Two Fridays ago, though, Nico's aide wasn't on the bus and F was one of the girls who volunteered to help. It didn't go well at all, but everyone made it home safely.

Monday morning, though, I saw F with a plastic bag with little rectangles of paper, pencil drawings, and words written on it. I asked her what they were and discovered that she was trying to replicate one of the communication systems that the teachers and aides use for Nico. They carry a bunch of communication cards (bathroom, thirsty, desk, marker, etc. They look more or less like this.) to supplement the use of an Ipad-based communication program. F decided to make her own cards. As near as I can tell, no one told her to do this or helped her - she just observed what the teachers were doing and decided to generate her own assistive technology.

So, M, thinking more about the community in which my son lives, I can say pretty strongly that it is not so sad when people have special needs. Thanks to you and his other friends who are trying to do their best to create a more inclusive society. I'll do what I can to help you.


5 comments:

S.B. Stewart-Laing said...

Thanks so much for this. I've encountered a shocking number of people who seem to think having a disability or chronic condition, even a manageable one, is the Worst Thing Ever. One person even said to me she 'couldn't deal' with having to take meds and follow a special diet for the rest of her life--she was totally serious! She seemed to expect that I would agree with her and say my life is terrible or something. My other half has some special needs as well, and I hate that people act as though she has some huge burden when her main source of problems is people who treat her in a condescending way (oh, you can't do that, you have a disability) or act like the fairly small accommodations she needs are a huge problem.

David Perry said...

Thank you for your comment. And yes. Because we all are likely to become disabled at some point in our lives, if we are lucky to live so long, it's vital to shift these perspectives.

Karen Gregoire said...

Josh made forever friends in elementary school. On Friday, 6/6, he will walk with them during his high school graduation. These are caring, loving, devoted adults and FRIENDS of Josh's. It is a remarkable thing.

ann-totusek said...

My tendency is to embrace the power of "and" with these things. Yes, it is sad when people have special needs, and it's also true that people with a variety of special needs and the people in their lives have accomplished a LOT, sometimes as a direct result of the existence of those special needs. Personally, I'd rather not have my special needs. I'd rather my son not have his. But they are there, and both he and I are growing, learning, stretching , and being pushed in ways that we wouldn't if they didn't exist. Like everything else in life, it's a mixed bag.

David Perry said...

It's really important to be able to own the things that are hard and not pretend we're all happy happy all the time.