Ontologies of Cure and Care

Last month, I wrote about a struggle I had with my participation—or lack thereof—in an Alan Kapprow Happening called “Company”. The specific instructions, written in 1982, are:

A person locates a bare room and sits in it for a long time. Then she or he brings into the room a cement block and sits with it for a long time. A second block is brought in, a third, a fourth, a fifth and so on, up to the number corresponding to the person’s age. At each addition, the person sits with the blocks for a long time. Then, one by one the blocks are removed. The person sits, as before, at each stage, for a long time, until the room is empty. Then, she or he sits in the empty room.

Here is what I presented in class the week after I was scheduled to participate:

On February 4th, I watched the Philadelphia Eagles win their first Super Bowl.

To say that I’m a lifelong Eagles fan, while true, is probably not the most impressive of statements—after all, I’m only 34. My wife’s grandfather—we call him Bubba—is a 101 year old Patriots fan. Now that’s an age to brag about, 5 super bowl rings or not.

Regardless, this story not about the Eagles. Rather, it’s about my body.

After spending four hours screaming at the TV, jumping up and down, and eventually dolling out hugs to any green-clad sweaty mess in a 6 foot radius, I felt great. I wore my Eagles flag as a cape. I walked my dog while sending celebratory texts to my friends back in Philly.

The next morning, however, was a different story.

When I was 27, I was officially diagnosed with Ehlers-Danlos Syndrome, a congenital, chronic, genetic, degenerative, and painful collagen disorder. The diagnosis explained why my wrist had given out from years of typing, why I bruised easily and healed slowly, and why my digestive system would illogically react to physical over-exertion.

But I was only 27. I didn’t need to change much in my life.

In the seven years since, I’ve learned a mantra: it’s not the stretch, it’s the recovery. When a so-called normal body lifts a weight, its muscles tear, its collagen repairs the damage, and mass is built. When an Ehlers-Danlosian body lifts a weight, the repair comes over an excruciatingly long and painful time.

When I woke up on February 5th, what I call my yelling system—my lower abdomen, my back, my voice—were all damaged. I wonder how Bubba felt.

I’m telling you this story because I want you to understand the way I went about planning my Company execution.

As I saw it, I had three options:

1. I suck it up, lift the blocks, and experience pain in my arms, back, neck, and head for an extended period of time—a pain that starts as an annoyance but eventually causes sleepless nights of pounding Aleve in the hopes I can function the next day.

2. I tell you I did it. I go into the space. Look at the blocks, think about how they look very heavy, maybe do some homework, and pretend like, yeah, I had a super meaningful experience, and move on.

3. I just don’t do it. I come in and explain what I’m explaining now.

I decided to go back to the source—and I don’t mean Kaprow in this case, but John Dewey, a major influence on the artist.

Dewey writes that “every experience is the result of interaction between a live creature and some aspect of the world in which he lives.”

So what will my experience be? What aspect of the world in which I live will I interact?

Dewey continues, “The stone is too heavy or too angular, not solid enough…the process continues until a mutual adaptation of the self and the object emerges and that particular experience comes to a close.”

I had recently been thinking about care versus cure—that is, should we, as a society, seek to fix a person’s disability or should we seek to build a world in which that disability is inherently cared for.

So I let my friends care for me. And it was quite moving.

In The Body Multiple, Annemarie Mol explores the various ontologies—that is, the way of thinking about—a relatively common condition of the arteries called atherosclerosis. To a cardiologist, the disease looks like plaque in the arteries. To a nutritionist, it looks like a diet overabundant in trans-fats. To a patient, it looks like taking aspirin every morning.

When I see the pile of 34 cinder blocks to be carried, what am I looking at? Do I see an experience? A happening? A cause of pain? What is that pain?

Ontologies of cure and care constantly govern what the disabled body can or cannot do. While they are sometimes in sync, more often they are at odds. Which one is your default? Which one do you rely on?

One Comment Add yours

  1. Anna Fenton-Hathaway says:

    I’m intrigued by this: “So I let my friends care for me. And it was quite moving.” Can you say more?

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s