labeling experience as disease

Here’s another one written a long time ago. This is like cleaning out a closet. Publish!

I was so shy in kindergarten that I didn’t talk to anyone all year. The comments on my report card expressed concern. For most of my childhood it wasn’t unusual for me to change my course, like taking a detour around the back of a building, to avoid being seen by another person. Being seen hurt.

I had a blanket that I’d fold in a specific way and rub against my lip while sucking my two front fingers. This must have gone on for a long time because I remember it well. I don’t think I brought it to school, though. I’m guessing someone managed to convince me that wouldn’t be a great idea.

And I rocked, almost imperceptibly, but also almost all the time.

Looking back, a lot of my behaviors look a little autistic. I actually used to think about this a lot 25 or 30 years ago, when revelations about autistic behaviors and the expansion of diagnoses into Asperger’s syndrome was happening, but I resisted going there. The descriptions of Autism symptoms usually emphasized the inability to connect to other people emotionally, but my memories were filled with overwhelming emotion.  My problem wasn’t a lack of empathy, it was an excess. Every time I glanced at someone I was flooded with whatever feeling they were experiencing. That didn’t  match the descriptions of autism I’d heard about. Now I’m not so sure, but I’m well past caring. Finding a label is irrelevant. There would be no benefit; it would just associate my absolutely real experiences with a perception of disorder.
I have been thinking about why we are drawn to labels of this sort, and why those labels are both satisfying and terrible. I guess I’ll very reluctantly concede that a label can be useful sometimes to some people. The example I can think of is the lonely parent who simply feels overwhelmed, alone, and guilty. Getting a label for a child’s difficult behavior can create a road to finding other people who have shared those same frustrations. Access to community can be critical, giving a parent who is just about to break from frustration some validation that they aren’t just inept. But the dangers are at least as significant as any benefits.
I know this isn’t anything new but it still strikes me as profound, and I’m still not convinced that most people get it. When someone is seen through the lens of a disorder their experiences turn into symptoms. An episode that looks typical for the diagnosis becomes a generalization, stealing both the experience and its meaning from the person actually living it. The result is that these behaviors are tolerated, but invalidated. They are summed up and written off. Rather than accepting, experiencing, sharing, exploring, knowing, and validating the experiences as a part of someone’s existence, we explain them away as artifacts of illness. They are disposable, and they represent something that should be diminished, or removed. We look for medications to make them stop.

That sucks. Isn’t it our idiosyncrasies that make us who we are? I guess we’re only supposed to be different in attractive ways.

It seems to me, though, that technology is teaching us something else.  Almost everything we have learned to accomplish, and simultaneously valued ourselves in reference to, is, or will be, achievable through technology.
Where does that leave us? When Deep Blue beat Garry Kasparov at chess, or Watson beat Rutter and Jennings on Jeopardy, some people cheered but others felt a deep rift in their sense of human identity. After all, we are raised in a system that ranks and sorts by abilities. We learn to equate our worth with our potential for achievement. So what happens when all our achievements can be mass-produced?
That’s when we finally realize that the value of life lies in its experience. Our lives are nothing but experiences. Trying to protect ourselves from difficult experiences seems like trying to limit the scope of life.
Our current desires to optimize people, making them as beautiful, intelligent, healthy, and as perfect as possible in every way possible is misguided.
The way to maximize humanity is to share fully in its diversity. Its diversity is its greatest blessing.
This isn’t just empty preaching. The failure to recognize the significance of experiences that might fit under an umbrella of diagnostic criteria causes immense suffering. It leaves us empty of meaning, empty of connection, and spiritually bereft. Whether a hallucination is perceived by others as an artifact of schizophrenia or a vision from God changes the experience of the hallucinating individual, but neither really connects us to that individual on a human to human level. Open dialogue, with the goal of sharing experiences in order to find their meaning does.
Granted, some experiences are beyond communicating. In those cases we can aim for grace.


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