Planet of the Blind

Of course it goes on for days. Window shades roll up and down. Paint cracks along the moulding. Far from this room someone smokes a filterless cigarette. Some Rosie the Riveter or John Bunyan. And the pain pumps like a rubber bladder.

Blind people have headaches. Oh not all of them of course. We’re wildly different from one another. But hot rivets behind the eyeballs are common with many of us. It spreads across one’s face and skull like fire in dry grass.

If you’re one of the lucky blind who has a job you’re a figure of misapprehension by colleagues, often thought to be moody, perhaps unfriendly. Those blind people. He looks bitter all the time. Well, you try walking around, unable to see what’s in front of you while a prairie fire rages in your noggin.

I’ve laughed for years at the “let’s pretend we’re disabled for a day” exercises you see on college campuses. There’s always some poor soul wearing a blindfold and poking around with a cane. I want to whack them with a ball peen hammer and taser them just so they can get a better appreciation. The “not seeing” is just cake icing.

So I’m a blind spoonie counting out functional minutes and almost daily. Rarely do I have a happy 9-5 pain free teaspoon day.

Of headaches it can be said they’re more like a mist than a rainfall. Rain is for amateurs.

I want to be beautiful like the worm inside the thistle and I want a good, hard, unpolitical crying jag wherein I shall weep for life within the life.

I deliver a weather report. Today will be a high gravity world without adequate language for death and dying. Late in the afternoon someone will ring a bell.

Spring. Phooey. Sugar poems are written on all continents. Easy to glow rapturous about the outward things but it’s also the season of ghost maples. No one’s writing about them. Too hard I guess. Now that spring’s here I want to lie down on the wet leaves that spent winter under the snow. You can’t explain this to anybody. They’re all dancing around like Percy Shelley.

No. No. No. No. This is a Shelley free zone. If we must have a poet let it be Auden:

“Behind the corpse in the reservoir, behind the ghost on the links,
Behind the lady who dances and the man who madly drinks,
Under the look of fatigue, the attack of migraine and the sigh
There is always another story, there is more than meets the eye.”

Let us pretend to cheer, the work of all sowers and gardeners. There’s always another story and we can mostly keep it to ourselves.

I will pass from this world soon enough…

As a guide dog traveler I could die on any street though my dog offers some hope we’ll make it across. But like many disabled I live with the intricate and dark understanding I could disappear at any moment. Abled people have this also, specifically when they think about random gun violence in supermarkets or schools, but us disabled have this always. It’s not just a blindness thing. Wheelchair users know all too well the perils of street crossings. Autistics know about the horrors of police interactions. And the medical industrial complex, our rich and muscular father, he despises us.

These and other thoughts were on my mind yesterday as I contemplated turning 66. Route 66.

Disability is a matter of knowing all about mortality and precariousness. It’s many other things of course. But like Carl Jung’s metaphor of the house under the house this is the Etruscan sub-basement.

I remember how my late friend, the disability activist and scholar Bill Peace was attending a conference at Yale University. The event was about bio-ethics. Bill was a wheelchair user and he had a sudden cardiac emergency. He was taken to Yale Hospital where, believe it or not, he was shunted to a corner of the emergency room and left alone for 7 hours.

Bill died two years ago in another instance of medical neglect.

Route 66…

**

As late as 1985—yes, believe it—just five years before ADA, I was told by a graduate professor that if I was blind I shouldn’t be in his class. This was at the University of Iowa. That’s pre-ADA in a nutshell. I went to the department chair—he called me a whiner; I went to the Dean, he looked at his watch; I went to the university’s “ombudsmen” (quite a feat since his office was incredibly well hidden) and he also looked at his watch; I talked to the moribund and ineffectual disability support office—they said, the best we can do is give you a note that says you can have more time for exams. The demeaning, bigoted, ableist hostility was untouchable.

I left without my Ph.D. I already had a graduate degree in poetry writing. I packed up. Pre-ADA there was no recourse. If they told you to get lost, well, you didn’t have ammo to fight with.

Those who say the ADA has’t done enough for the disabled are not wrong. And there are still professors everywhere like the late Dr. Sherman Paul who treated me with unspeakable disdain. But post-ADA you can fight back. Post-ADA there are consequences provided you’re willing to snarl and push. There’s still a boatload of ableism around. It may even be fashionable with some. But ableism is long past its sell date and it smells funny—by which I mean you can’t hide it anymore.

I know the ADA hasn’t created lots of jobs and I know it hasn’t changed every mind. Even now the Chamber of Commerce still fights disability rights. Recently with the Chamber’s help Domino’s Pizza tried to say the blind don’t have the right to use their websites—they lost in court—but you see how it goes.

Where am I going with this?

Every street in town is potentially lethal. Every emergency room can kill the cripples. Education is still hard to obtain for the disabled. One in four disabled students graduates from college.

Route 66 indeed.

Someone sent me a plastic Buddha in the post. There was no return address just a plain brown wrapper. He was squat and soapy green and listed to the left since his bottom wasn’t milled properly. He had sharp spurs on his feet like a toy soldier.

This was years ago when I had friends. “Who would anonymously send me a kitsch Buddha was the most obvious question. Was it a prank or perhaps a warning? I was a recent graduate of the Iowa Writer’s Workshop. Was it literary criticism? It seemed like a thing one poet would do to another either with or without a true motive. That was the thing. He represented motiveless long distance tomfoolery. Or so I told myself. I put him next to Wallace Stevens in my bookcase.

Why not a plastic Buddha? Why not silk flowers in the wintry north? So what he isn’t quite upright?

I knew where he came from alright.

“Virvon varvon tuoreeks, terveeks, tulevaks vuodeks, vitsa sulle, palkka mulle!”

–Finnish children’s chant on Palm Sunday

In Finland on Palm Sunday children dress as witches and knock at neighboring doors while carrying pussy willow branches which are sometimes bedecked with feathers. If the door is opened they pronounce a blessing rhyme and leave a branch as a gift, while receiving sweets in return.

Roughly translated the chant goes like this:

“I’m wishing you a fresh, healthy upcoming year, a branch for you, a prize for me!”

It really can’t be rendered in English for there’s a playfulness in the rhyming, like saying, “Hinx Minx, the old witch stinks….” We English speakers have no way to rhyme health, happiness and reciprocal gifting.

But this is what I’m wishing you.

Do you find some streets in Syracuse difficult to use because of how they are designed or managed?  

The Inclusive Public Space research project at the University of Leeds, together with the Burton Blatt Institute, want to hear about your experiences as a pedestrian! More information about the project is available at https://inclusivepublicspace.leeds.ac.uk/.  

They want to hear from pedestrians who have had any kind of difficulty with roads, streets or sidewalks in the city of Syracuse – particularly people with disabilities, older adults, parents or caregivers. Anybody interested can participate without leaving their home, as all interactions can be by phone or online. Please consider participating and spreading the word.

If you’re interested in participating, or would like further information, please let them know by: 

–        submitting your details at Inclusive Public Space Project – Expression of Interest Form (link: https://leeds.onlinesurveys.ac.uk/expression-of-interest_usa); 

–        email at IPS.Project@leeds.ac.uk, or 

–        phone (voice/relay/text) at 678-701-3771 or 315-314-4179. 

In the airport where women and men
Are strangely themselves
As children are in churches
You see how lonely you are
Though you’re married
Have children, friends,
Or a loving partner
And laughter—
There it is, beside
The vending machines
Your shadow solitude
Searching its pockets
For proper coins
Known to Caesar.

Always this implausible and resolute desire to write. Who would do such a thing when there are such fine alternatives? What is this resolution? Go to the poets and they’re seldom any help. They become high minded what with God and love and the soul. You know the drill. It’s wonderful when Philip Larkin says “books are a load of crap.”

But the resolute voice pushes the body to its resolute desk for it doesn’t merely belong to the American president and the voice-arm insists on the loveliness of meanings. And sure the matter is more urgent for the hopes of life hang by a thread…Langston Hughes:

“Hold fast to dreams,
For if dreams die
Life is a broken-winged bird,
That cannot fly.”

So I say the desire to write and its resolutions have to do with keeping dreams alive. And some mornings this work is like mouth to mouth resuscitation; other days it’s a damned lucky thing, the words come trippingly and as Theodore Roethke would say you’ve been struck by lightning.

But whatever it is, you’re trying to mend the broken winged bird.

Then of course there’s the muses meet schadenfreude thing, again best depicted by Langston Hughes:

“Looks like what drives me crazy
Don’t have no effect on you–
But I’m gonna keep on at it
Till it drives you crazy, too.”

If you’re disabled you almost never get the microphone and if you do you’re pressured to squander the moment, telling the non-disabled there’s no such thing as disablement, there are only bad attitudes. Blind people like me are asked to reassure the sighted. This holds true for all disabilities.

Able-bodied-microphone-land (ABML) is a Lewis Carroll kind of place. As the Beatles once sang: “you know the place where nothing is real…” The latest version of this is a stage adaptation of Jose Saramago’s novel “Blindness” where the audience sits in complete darkness and hears a story of blindness as contagion. Yes. Blindness as COVID. Presumably sitting in darkness adds verisimilitude. “By God, Brother, this must be what it’s like!” I’m here to tell you: blindness doesn’t represent anything and real blind people don’t sit trembling in the dark.

This play with its audience participation trick really troubles me. I’ve spent the last thirty years traveling the world talking about disability as lived experience. Disability is just like anything else–left handedness or having big feet. When it’s metaphorized it becomes a superstitious fiction designed to frighten the temporarily normal.

I’m not going to tell you that the blind can do anything the sighted can. You wouldn’t want me operating on your brain, at least not with our current technology. But it should be clear–blindness is no obstacle to living a full and rewarding life. The public doesn’t understand this. When I’m on a bus with my guide dog someone invariably approaches and wants to pray for me. Strangers want to give me coins. They can’t conceive that I’ve a professional life, a family, that I’ve been known to water-ski.

Saramago’s blindness is not only silly, it contributes to ever more superstition. I think we can all agree we need less fear and nonsense in our lives. As I write this it’s estimated that 70 per cent of the disabled remain unemployed in the United States. Accommodations to help them in the workplace are inexpensive. What’s holding them back? Well, alright, I’m going to call it the “Saramago Syndrome.”