Planet of the Blind

Against all odds
Departing
Into limbo
I’m leaving this page—
What happened
Occurs here
My brother
Dying
Listens
Trees grow
In rain
Birds call
I leave them
Poems pass on
No end of trouble

Each morning I put on my utopia coat
Its pockets filled with zeros
That my loneliness and yours
Will be served, just as we feed
Lost dogs, just as we hope
For a sweet, apolitical surprise
Around every corner
I don’t ask if you know me—
Shadows and sand grains
Don’t ask—though I murmur
Funny to be in this body
And not that one
All our eyes expect
To be received

I see now how naive I’ve been throughout my professional life. It’s possible you also know this feeling—that sense, how to put it, that you were always Gomer Pyle in every meeting. I’ve always been the naive one. When there’s a committee and I’m on it I think getting things done in a collegial way is what it’s about. Sorry Gomer. The committee decided everything before you arrived.

In her excellent book “Surviving Autocracy” Masha Gessen writes: “The “freedom of our speaking with one another” depends on a shared language. ” I think of the dystopia of the work day. The meeting is about something good, maybe even unambiguously good like improving disability services at Widget College. But you’re not speaking the same language as the many who are largely without disabilities. You’re talking about access, accessibility, dignity for students and staff. They’re talking about checking off an administrative box. How is it you didn’t learn this lingo Gomer?

A big part of the reason I never learned the shared language of employment is that I’ve always believed when people are talking about the weather they’re really talking about the weather. But of course that’s silly! The average American knows weather-talk is just a front for back room chatter.

Am I naive because of my disability? Yes. My brand of optimism depends on believing there’s a shared language when, oh I don’t know, when diversity, equity, inclusion and accessibility are on the table.

**

Back to Masha Gessen:

“The Russian poet Sergey Gandlevsky once said that in the depth of the Soviet era he was taken with the language of hardware stores. He mentioned “secateurs” (garden shears). It was a specific word; it had weight, dimensions, shape. When a person said “secateurs,” they could only possibly mean the distinct object the word indisputably described. The language of politics is less specific and more mutable than the language of hardware stores, even under the best of circumstances, but we can and should be more intentional when using it. The vocabulary of American political conversation is vague. ”

The disability version of “secateurs” is actually “access” but the non-disabled, hearing it, think about lunch, of what they’ll be having to eat when the meeting is over.

Gomer’s not thinking about sandwiches. He does tend to think talking about the weather is a real subject.

The other night, tired of Scandinavian noir, I watched a Frank Zappa concert filmed in the early 1970’s. It was an awful experience. It threw me back into adolescence. Between 15 and 25 I was an unblinking fan of the Mothers. It came over me that while the music was good, Zappa’s puerile bullshit was, how to put it? His onstage persona hasn’t aged well.

The man didn’t like his audience.

These days there’s a lot of that going around. The sports star doesn’t like his fans. The politician who hates her voters. We pray for the day when self-contempt becomes a museum.

Meantime, there was Frank, sneering at drug addicts, women, people who like to dance, in short, the average concert audience.

No one is having any fun in the film. Not the audience, not the musicians. But they pretend. And there’s Zappa, winking, “I don’t like any of you, and look at what you’ll do for me!”

It’s said that Stalin used to make his dinner guests dance to a gramophone record of howling wolves.

I went back to Scandinavian noir.

When you’ve lived a life in which you’re wrong—wrong to be in the room, wrong to imagine having a job, wrong when, if you’re you’re suddenly employed and ask for the tools you need—then you’re my brother or sister.

I’ve been walking a long time on the frozen canal of ableism which is not a mixed metaphor, not a glib analogy, for there’s a static, endless coldness to it. The non-disabled don’t want you. Sometimes they say it outright, sometimes they let the weather do the work for them.

Sure, you keep walking, rolling, limping, because life is motion, even when one is paralyzed thought is motion, ideas move like words in poems.

Of course “wrong” is malleable. You’re a cripple and decide to live upriver in a place of your own affiliation. You play unfashionable music on your old record player. In solitude you have no trembling.

**

In her posthumously published novel “The Real Night” Rebecca West describes the simmering injustices of childhood which she allows are inflicted in the service of a social lie. The narrator portrays herself and fictional sisters as coming of age, therefore arriving at a place of indeterminate but welcome freedom:

“We were as happy as escaped prisoners, for we had all hated being children. A pretence already existed in those days, and has grown stronger every year since then, that children do not belong to the same species as adults and have different kinds of perception and intelligence, which enable them to live a separate and satisfying life. This seemed to me then, and seems to me now, great nonsense. A child is an adult temporarily enduring conditions which exclude the possibility of happiness. When one is quite little one labours under just such physical and mental disabilities as might be inflicted by some dreadful accident or disease; but while the maimed and paralysed are pitied because they cannot walk and have to be carried about and cannot explain their needs or think clearly, nobody is sorry for babies, though they are always crying aloud their frustration and hurt pride. It is true that every year betters one’s position and gives one more command over oneself, but that only leads to a trap. One has to live in the adult world at a disadvantage, as member of a subject race who has to admit that there is some reason for his subjection. For grown-ups do know more than children, that cannot be denied; but that is not due to any real superiority, they simply know the lie of the land better, for no other reason than that they have lived longer. It is as if a number of people were set down in a desert, and some had compasses and some had not; and those who had compasses treated those who had not as their inferiors, scolding and mocking them with no regard for the injustice of the conditions, and at the same time guiding them, often kindly, to safety. I still believe childhood to be a horrible state of disequilibrium, and I think we four girls were not foolish in feeling a vast relief because we had reached the edge of the desert.”

I’m alert to the ableism in the passage but also Interested by its unsentimental analogies. If childhood is its own disabling circumstance it’s because small bodied happiness is unattainable in a world designed by the larger bodies. Notice West’s elegant insertion of compass in the service of withheld compassion. Nothing more perfectly describes disability struggle than the picture of compass-compassion denied. The first is an accommodation, the second is moral philosophy much as Hobbes saw it. That is, compassion is a social choice. Compass, compassion, contract.

Today’s cripples do not admit there is some reason for their subjection but unlike West’s young women we’ve not reached the edge of the desert.

**

I’ve been watching “Breaking Bad” like millions of others and though I’ve been “drawn in” I haven’t been captivated–a distinction reflecting disability and cultural theory as opposed to more ecumenical views regarding embodiment and agency. The latter are, to quote Susan Sontag, matters of lying, as in lying about cancer and then lying about our social circles: “patients are lied to, not just because the disease is (or is thought to be) a death sentence, but because it is felt to be obscene–in the original meaning of that word: ill-omened, abominable, repugnant to the senses.”

From the outset it would be wrong to characterize “Breaking Bad” as simply a cancer narrative but it is nearly so since Walter White’s diagnosis is the incitement premium (as Freud would call it) the idea at the top which gets all that art and anxiety going. Walter is ill and though physicians don’t lie to him, he absorbs all the ill-omened, abominable, and repugnant pathos of his diagnosis. Dark history now and then will grant a man permission to behave as badly as he wishes to. Walter becomes an agent in the original sense of the word: someone or something who produces an effect. He’s cancer-man; unbridled; unhouseled–he eschews salvation; he’s vengeful. He understands class distinctions and the cultural impediments to achieving freedom. He’s a contemporary middle class American, one who is falling from the wheel of fortune; he’s every man in the age of the affordable health care act and shrinking jobs; he’s the pure product of Paul Fussell’s status complex–Fussell who said famously, “Americans are the only people in the world known to me whose status anxiety prompts them to advertise their college and university affiliations in the rear window of their automobiles.” Walter is an embittered status hound. He’s terminally ill. He’s going to produce effects. With his slacker ex-student Jessie Pinkman he’s going to “cook” and make money, beat the clock, provide for his family before the big “C” gets him.

It’s hard to like cancer. But aside from the whack-a-mole portentousness of Walter’s diagnosis, the narrative incitement of “Breaking Bad” has everything to do with dark agency: accordingly the show depends on unabashed ableism. By this I don’t mean simple “discrimination in favor of able bodied people” but what David Mitchell and Sharon Snyder call “narrative prosthesis”–disability as a vehicle employed to reinforce normalcy. Narrative prosthesis deflects the abnormal body by dramatizing its unseemliness and presuming its incompatibility with our better natures. This is “Breaking Bad” in a nutshell.

What makes narrative prosthesis palatable? The answer (as Dickens well knew) is the Tiny Tim effect–the cripple must stand for something larger or more urgent “right now” in culture. You might not ordinarily think of Walter White and Tiny Tim in the same room, and if you were inclined to think of Tiny Tim at all in the context of “Breaking Bad” you would most likely imagine Walter’s son Walter Junior who is portrayed as having mild cerebral palsy. This is a clever prosthetic red herring, a ruse on crutches, for Walter is Tiny Tim in the purest sense: he reflects cultural ideas about illness. Why? Because his diagnosis is inseparable from his latent capacity for dishonesty and cruelty–a matter the show labors to prove throughout its first season as we see him despise friends and former business partners and family members who wish to help him. He’s Ahab with cancer and no health plan and a chemistry degree. He’s a figure for our times: smart, ironic, bitter, a little crazy, shrewd, vengeful, oddly nostalgic for his nuclear family, entirely creepy. But while the show strives to make these qualities digestible its larger Aristotelian template is a simple reduction of ableist ideas about serious illness. Everyone will be made ill by Walter. Everyone is rendered a cripple by Walter from his brother in law the DEA agent to his wife to Jessie Pinkman. And this is the oldest and most repulsive idea about cancer of them all. Cancer as metaphor. Intoxicating. Everyone alive with vices. Even the environment has cancer. The houses. When ableism really works its best magic the city is cancer. As Sontag says: “Before the city was understood as, literally, a cancer causing (carcinogenic) environment, the city was seen as itself a cancer–a place of abnormal, unnatural growth, and extravagant, devouring, armored passions.”

There is one other dichotomy of cancer as metaphor that “Breaking Bad” exemplifies to the hilt. Because cancer functions metaphorically as a reification of capitalism, Walter engages in two kinds of symbolic behavior: before his diagnosis he stands for early capitalism with its sagacity, accounting, and thrift. After his diagnosis he is the embodiment of post-industrial capitalism–expansionist, excessive, speculative, or as Sontag would say he represents “an economy that depends on the irrational indulgence of desire”).

“Breaking Bad” positions cancer as loathsome and fatal and morally contagious. In this way it subverts healthy bodies and disabled ones.
**

Back to the desert, which one hopes to escape, the location of Walter White’s brief hour upon the stage, the nursery of all helplessness where brute adults still own the compasses. That is of course the discovery. Ask any disabled high school student if it’s easy to transition to college and receive appropriate accommodations when in fact the nature of the work you’ll be expected to perform has changed. Ask them if the compass is easy to get when you’ve left childhood only to arrive in a larger barren place.

So the takeaway from West’s novel is that normal teens can expect to leave the desert of childhood disadvantage and enter the garden of compasses and compassions. As a cripple the haunting thing is knowing how few accommodations my people will have when youth has ended.

**

Small bodied happiness. The politics of childhood? Here’s a poem from my notebook:

Childhood

They took us to cemeteries, many times, always in a hot car,
And there were oak trees, hyacinths, women’s hats.
Grandmother spoke of fright with a Finnish accent.
We learned to sit still,
Letting sadnesses trail from the windows.

Childhood and disability are both states of disequilibrium as West would have it. The land which won’t admit of health, of the possibilities of health, of the sharing of health, the land that is ironically Walter White’s and ours, is also infantilized and becomes disabled.

There is no place of private escape, though I pretend it.

It’s privilege to imagine the above. In America if you have a mental illness, that is, if you’re disabled by it, they put you in jail.
In her excellent book “Insane” Alisa Roth notes that 43 per cent of the prisoners in Riker’s Island are mentally ill.

Who am I to pretend I can live in the attic?

I read between the lines. Pretend good things about the future.

I know you do as well.

Life is some kind of motion.

Perhaps as a poet said, there really is a tale lit by the soft light of sleep. “Perhaps” grows around the house like birches. Perhaps there’s a meadow where the dead dogs frolic. I’ll never give up on perhaps. A fritillary lands on the unpainted porch, having returned just now to earth through a black sieve.

**

It rains in the apple trees
Where a crow settles
In a dome of blossoms—

I watch him
With my clear head
The way blind people do…

**

But the music. Nobility. Dignified growth of the man. No more hunched shoulders.

And Mahler, always an intruder, never welcomed, little Bohemian, as a boy, conducting the birch trees…

O Great Satan
Take this perforated soul
(It was scarcely used)

“Do you see,” it said, my soul
“How the body, even in repose,
Even with poetry
Is just a war grave?”

We’re sorry
All our lines
Are currently busy—
For Satan press one…

“Just park the thing here,”
Says Charon,
“Someone will come out…”

Someone who is not your relative
Stands by the hand of a clock
Reliving the thing—
Best to know it
Know suffering
Know there’s no word
Coming or discoverable
Among papers—
Remember the coarse child
Who shouted
When the valley filled
With knives
Know it
Laundry hanging
Outside
Blue Queens
Subway windows
Strangers beside you
Advertisements flare
A snapshot
Of horror
In each bowed head

It wasn’t much, the leaves touching air
Without a King behind,
A grievous hint of autumn coming on
As if we could go back
To where we were born
Either/or I wrote
Journaling on the bus

Either/or I am darkness descending
Or giving way
So morning is clear
Today, just a man
Walking with shadows in him
And no one knows how it will be
Or if our five senses
Will ever rise

There are bare winter days
When light at windows
Marks you a split man
And nothing firm keeps
With the soul
Soul turns sideways—
All you’ve got
Is Bach on the radio
And neighborhood
Houses without expression

Funny to keep this journal
The shirt in last night’s dream
From childhood
With dreadful stripes
Which I wore to the hospital
Blind boy headed
Alone to surgery
The thing coming back
Snow falling…You can
Rely on winter light