10/29/2009

No vanilla for me, Another one bites the dust, and Insomnia


Bobby, standing in the rear, with the sweatshirt and mask


Yesterday my husband I and attended our son's halloween concert at the day center he attends. He did an awesome skit to "Another One Bites the Dust," a song which will now NOT get the frak out of my head. He pretended to fight a friend, and it was a sight to see, he and his friend bobbing and weaving. I laughed the whole way through in absolute delight. The whole concert was one that had me laughing and tearing up.

It was awesome. It really was. They were energetic performers who were thrilled to be up there in front of family and friends. It was a heart-filling experience. He is well-liked there, as well, and we were inundated with friends wanting to meet us and shake our hands (many we've known for years).

It's a good fit for him. He's liked, he's happy, and he's of help there. He's accepted and cared for. It is a wonderful program.  It does have some low-key drama, but it's low key.

As I watched this diverse group of individuals ranging from teenagers to the elderly, all with disabilities in common, I thought about cures. About neurodiversity. About what it means when we say we want to cure someone of what we perceive to be a disability. And it seems to me that a lot of the disability labeling remains a social construct. It is a way of defining ingroups and outgroups, the haves and the havenots, the worthwhile and the waste-of-times. Of course, the mainstream dominant group gets to do the labeling.

And the folks who tout the idea of curing the disabilities that create a subgroup of mentally challenged and physically challenged might just be a wee bit uncomfortable with people who are different. I'm not talking about ignoring real needs, offering care, compassion, acceptance, supports, whatever the disabled need to be successfully integrated into society. I'm just saying that a lot of it ought to be society adapting, not the disabled.

Also, there's an element of moral superiority in assigning disability status, an absolute sense that the non-disabled is superior. And I think that's wrong. I do. So, I looked at these sixty plus individuals who attend the center with my son, whom he has known for six years now, who care about him and accept him as he is, and I thought about those people who would push for cures for each of them as if who they were was inadequate, insuffient, insignificant. And I thought of those who would look at these interesting, animated individuals and see them as lacking, as less than, and I was irritated. I think that, when the support is adequate, when the acceptance and appreciation is there, these people who are unable to care independently for themselves can have very good, extremely satisfying lives. Where the support sucks, where the appreciation and respect are not there, I think their lives can be an abysmal hell.

I think that rests squarely on society's shoulders. And I think that organizations that promote the idea of vaccines as the culprit for autism damage their children's future and mine when they engage in their bullying and fear mongering tactics. I think they don't speak for me, for my children, for many of us and it's more than time to make sure that if people in mainstream society hear someone calling themselves a warrior or an autism parent and they aren't in the military and aren't autistic themselves, the mainstream will have a real clue as to the belief structure of the person they are dealing with. These parents haven't put child-centered language first in their advocacy; they've placed themselves first. It's about them. About recovering their American dream of a cushy, easy life in which their children outshine others.

To look at someone with a disability and feel sorry for them is to demean them and their inherent value. It presumes you have an elevated status above them. To look at them and feel empathy for their challenges and respect for how they persevere is to see them as fully human. To work to assist them in creating what they consider meaningful, valuable lives while working to reduce any suffering, to heal illnesses is not noble. It's the right thing to do. And too many people in our society are narcissistic, selfish, what's-in-it-for-me jerks who want to feel better  about themselves at the expense of others.

5 comments:

Corina Becker said...

excuse me while I applause and start thinking of a similar post on my blog. Mind if I quote?

KWombles said...

:-) Feel free to quote all you want.


I still can't get the song out of my head, though!

Once I can figure out how to compress the video down of his skit, I'll put it on facebook. He was so amazing. They all were. And they were joyful. It wells me up to think of it. It was an awesomely uplifting experience and tremendous fun to be there.

Squillo said...

Great, great post, Kim.

almandite said...

This is brilliant. *applause*

I'm going to link to it on my blog, if you don't mind. :)

KWombles said...

Almandite,

Thank you. :-)