Planet of the Blind

A stranger wrote me a fortnight ago and observed that my nonfiction is steeped in loneliness. This is true, for as many people with disabilities will acknowledge, the "formative years" are often solitary ones for disabled children. I spent the majority of my boyhood time in the attic of my grandmother’s house listening to a wind-up Victrola or else I walked by myself in the woods.

I have found that at fifty two I’m still lonely in spirit. I do not feel sorry for myself, nor do I need reassurance from family and friends–at least not overmuch. I am lonely on the inside. I can stand in a room and smile, tell a joke, sing a homemade song, but behind the tall grass of my familiar, inner life, there under the moon I am lonely.

I am in no way singular because of this. The man across the street who is picking the last tomatoes of the summer is lonely. The woman I met this morning who teaches linguistics at the university is lonely. My friends, my wife, all my relatives are quietly alone though we are trained to withhold this even from the psychiatrist or the priest.

The poet William Carlos Williams said in one of his poems "I am lonely. I am best so." I remember reading those words as a college sophomore and I felt the proper fit in my soul.

The feeling of estrangement is not a social matter as the boy or girl would imagine. The "difference" as Emily Dickinson wrote "is internal, where the meanings are."

The soul is needy as an empty pocket. It is thirsty as flesh itself but the soul cannot be quenched with drink or a good home in a nice neighborhood.

The soul senses that the full moon has risen and as the Spanish poet Federico Garcia Lorca wrote: "the heart feels it is a little island in the infinite."

The soul is in the condition of static or pure loneliness. This is why Jesus said to his disciples: "My father’s house has many mansions. If it were not so, I would not tell you."

Of all the lines in the New Testament those are for me, the most comforting. This is according to my soul. My soul, that lonely intelligence that hugs my tissues and bones. This soul that cannot get used to life. This soul that insists on walking around so that we together can work out the geometry of being alone in our shared and threshed hours.

Have you ever harvested the last sunflowers because the frost is coming? I did this once with some friends. We brought the half wild and stately sunflowers into the old house and we propped them against the hearth. We sang some songs and drank a little wine. Unspoken? Every one of us had a thirsty soul and we could, it turned out, give our souls a true room and some bright companionship.

SK

Last night I had a massage for the first time in 8 years. I have a lot of scar tissue in my left shoulder because I have been working a guide dog for over a decade. Guide dogs pull continually as a principal means of establishing navigational contact with their blind companions. The scapular area in my left shoulder is quite painful.

When I told my wife this morning that I’d gotten a massage last night, she wanted to know if it was painful. I said "yes" and she, like the true friend all spouses should be, said: "good!" Then she wanted to know if I "took it like a man." "Yes," I said, "I wept silently into my pillow."

I wonder sometimes if the able bodied public knows that people with disabilities have stress injuries that are the result of their accommodations. Wheelchair users have carpal tunnel syndrome; back aches, neck aches, profound tension headaches—all of these things are essentially the norm for PWDs.

I’m not interested in the business of "comparative pain"—the old farmer and his wife trading jobs gambit. I don’t like it when non-disabled people trot out the hoary hypothetical: "Which would you rather be? Blind or deaf?"

The proper answer is "neither" unless you are already blind or deaf, in which case you have a strong familiarity with the fatuous nature of that question. "On the whole, I’d rather be in Philadelphia."

Nonetheless, everyone hopes, whether they’re disabled or non-disabled, to have a static position regarding suffering. If we’re masochistic we want to know that our private pain is worse than the sufferings of the fellow next door. If we’re sadistic we want others to relive the life of Job.

None of this has anything to do with my wife. She knows that a good massage will be necessarily agonizing if it has therapeutic value. And hey, we all enjoy a teensy bit of suffering in others.

I paid greenbacks for my massage. I’m lucky to have the means to get some "body work" done. If I ever win the lottery I will start a foundation so that all PWDs can have the same experience.

Now I must put my pillow in the dryer.

Ernest Hemingway ain’t got nothin’ on this baby!

SK

Today I talked with my students at the University of Iowa about Mary Shelley’s novel "Frankenstein: or the Modern Prometheus". The course is called: "Disability in Contemporary Literature and Theory".

Some days when I walk into a classroom I decide to throw away my lesson plan and try something different. I asked the class to think of Mary Shelley’s novel as being a kind of cookbook. (We all know it’s a "Gothic" novel. (In a prior class we talked about the early "Romantics" and their place in British social and intellectual history.)

I wondered aloud if today’s students even read cookbooks. "I mean," I said, "I mean you are all from the microwaveable food generation."

But my students are from Iowa and God Bless Them; they have all read at least one cookbook.

"What if," I asked them, "Mary Shelley’s novel can be read as a recipe for how to make a disabled person?"

Here is what the class came up with:

Recipe: "How to Create a Disabled Person"

Ingredients:

A hundred human parts

Equal portions dread and hubris

At least 1 "mad scientist"

Needle and thread

Science without ethics

Next:

Throw big switch (otherwise known as vast, industrial gizmo)

Once disabled person "comes to life" do the following:

Make certain the "DP" can’t have access to language

Deny that the "DP" exists

Refuse to let the "DP" have a husband or wife.

Stigmatize the "DP" because he or she looks very different from the rest of the children.

And while you’re doing all of this, tell everyone you meet that you’re a very advanced thinker…

S.K.

Of course, to put this "creature" together, we’ll need BOLTS

I have ten minutes til the bus gets here.  I can’t tell if it’s going to be a hot day or a cool one.  I will either be over dressed or under dressed. I will likely be late for something.  I will certainly spill ketchup on my shirt.  I will track dog waste into the conference room.  I will press the wrong buttons on the elevator.  I will get lost in an ordinary neighborhood.  I will sing all day under my breath that old standard: "Eating Goober Peas".  I really did wake up this morning with that song in mind.  I was dreaming about that song.  I was trying to sing it in my sleep.  Thank God for the Unconscious!

Here I go…

SK