Elegy for Neil Marcus

I heard this morning that poet and disability rights activist Neil Marcus has passed away. Once, in Chicago, he put a radish on my nose. He was a lively and unceremonious rascal and by God I’ll miss him. We desperately need subversive humor in these times. The darker the jokes the better. I like this one by the Finnish poet Pentti Saarikoski:

“Elämä on ihmiselle annettu,
jotta hän tarkoin harkitsisi,
missä asennossa tahtoo olla kuollut…”

“Life is given to man
so he may consider
In what position he wants to be dead…”

Neil would have understood these lines as a benediction. Disability was always in his mind as a primary mode of imagination. If Saarikoski is correct, life affords us an opportunity to do our own jokes.

Neil’s jokes were better.


“The soul takes nothing with her to the next world but her education and her culture. At the beginning of the journey to the next world, one’s education and culture can either provide the greatest assistance, or else act as the greatest burden, to the person who has just died.”

Neil I hope you and Saarikoski are in the great afterlife sauna with whisks made from birch leaves…

Hurry Apple! Blind Users Matter!

Not long ago I dug deep in my pockets and bought a brand new MacBook Pro computer. Lucky me to have had enough spare change. One should acknowledge privilege. The machine in question was quite expensive as it has Apple’s newfangled M1 chips which are fast. The new Macs are magnificent.

Why then do I feel cheated? Ah Grasshopper! The new Mac has the latest operating system called “Monterey” and somehow Apple’s engineers have rolled out a product that is flawed and I mean badly so for it’s remarkably blind unfriendly. Where formerly the onboard screen reader called “VoiceOver” could read Epub books it now gasps, gargles, loses its path, and gives up in despair.

This is a dreadful problem. As a blind reader who relies on accessible technologies I’m genuinely distressed. I’ve talked via phone with several Apple tech representatives and I’ve been assured that they’re working on it. I believe them. I’m sure they are.

The question I have is how could they roll out a software upgrade that ruins the fundamental experience of Mac ownership for the blind?

The answer lies in the disconnect between Silicon Valley engineers and the non-normative end user.You don’t have to be blind to know this. The algorithms that run facial recognition devices are designed with white Anglo Saxon male bodies in mind. Airport screening machines set off alarms when gender non-conforming travelers pass through. In other words, the non-normative body remains an afterthought in design cultures.

We don’t really know how many blind citizens there are in the United States and just so, we’ve no clear idea about global numbers. It’s not a material issue. If you promise your product is accessible then stand by it. Don’t run rough shod over accessibility because “those folks” can be taken care of later.

Hurry Apple. I’m holding a $3000 quasi functioning brick in my hands.


I know what they did
To your daughters.
Some days I lie in a field
Spreading my arms. Once
Years ago during
A dark winter I tried
In vain to write a poem
In your honor. I was earnest
And the thing turned out
Like a nursery rhyme
But because it was for you
I kept it in a box.
There’s nothing wrong
With innocence
Though I don’t say it
Or I do, but only
In the proper hour
When I’m bowed
By injustice and need
Something like the first flower
I brought home.
I admit I know very little.
Easy. Rain now.
I prefer to think
There’s another life to come.

Some of us are just wilderness children…

Some of us are just wilderness children.


We have no patterns for relating across our human differences as equals.

        —Ibram X. Kendri


One has questions of course. It starts when you’re just old enough to despise Jacques Lacan. I don’t give a damn about the mirror as metaphor.


In the monastery at Velamo
I took a sauna bath with a monk
Who was one hundred years old
And in the steam his skin
Smelled like strawberries.
“What do you like to eat?” I asked.
“Strawberries,” he said.


And so the war doesn’t end
Though they promised the young
It would be so—the dreamlike president
Spoke from a cloud all Jehovah and shit
I’m with you he said we’re all in this he said
But if you looked closely


Tree children hiding…


It’s like Dante, everyone
Up to his or her neck
In a self loathing stew
And down at the peace and harmony shop
They’re eating butterfly wings…


It was good, I saw, to have a secret. Let the other kids with their baseball gloves and bats have at it in the field. I had Pagliacci.


I wish to explain myself
I don’t want to talk to others
Where is my home?


How he spends his life
Believing there’s another,
Standing on his own shoulders
Looking out to sea.


In grass at dusk
Silly he thinks
A cricket animism


Late afternoon
Railway station
I’ve got Salvatore Quasimodo
Inside me
No one can see it

What’s it like to land on a branch…

What’s it like to land on a branch
With bird feet?

What does the branch feel?


It was nature
Asked human beings
To speak
And look what we’ve done.


I like the ghosts of Victorian children—
I like their slyness of sincerity, “please mister!”


No one has the proper telescope for “my” sea.


Sure, I want to speak for silence
But I wake in the night
To the sounds of branches—
They say write your own book.


I haven’t forgotten about the ghosts of Southwell.
In the morning I need to be alone
So we can talk.

Notebook Nov. 6, 2021

One makes the world while drinking tea
Another—running for his life

No matter—the old soupy mind
Runs cold…this is something

To love


Catbirds drift me

Under yellow leaves
Among birches—

Since wandering blind
Isn’t straight


& slow life is the work
We turn to good
So we think

Let us be slow
Let us be very slow


Happily sharing our sanity
Is losing a thing together

We didn’t know it
A game we played

We will not meet
I enter the woods

The long day runs away
People I remember
Up late beside a lamp


“And here’s where the labor of death comes in: within the philosopher’s self-fashioning project, death is not only an integral part of biography, but it may end up being as important as life itself. Simone Weil, who knew more about these things than most people, was less concerned that she would not find the “meaning of life” than she could miss the meaning of her death: “I have always had the fear of failing, not in my life, but in my death.””

Simone Weil


Winter with a Book
Alone with old man teeth, what a thing!
Steam from lake, what a thing!
Drum roll Shostakovich—
Train whistle;
Dog barking far;
Hot tea;
Odysseus sailing….


“When spirits come in the forest something happens first. It gets quiet. You get about ten minutes of acute, padded stillness. It’s not like any other kind of stillness, any other kind of quiet, any other kind of atmosphere. This is your moment to run, if you still have the legs underneath you. Otherwise, the assumption is, you’re in.”

Martin Shaw, Small Gods

I write a poem a day sometimes two
I speak to a neighbor’s parakeet
Pull books at random from their shelves
No one is in charge no locksmith
I do not know my maker
My voice is a mystery
This life is a ship board affair—
Radio signals come
Turn eighty degrees left
Reduce speed
At this longitude
I own a notebook
Of mid-ocean static
Simply crossing a room

Mickey Rooney, Disability, and the Good Old Five & Dime

I don’t remember the movie where this occurs and I’m too tired to look it up, but a group of young white teenagers who are impossibly wholesome are down in the dumps when one of them leaps to his feet and says, “I know, let’s put on a show!” I suspect this is a Judy Garland-Mickey Rooney scene but as I say, I’m worn out and frankly “googling” is a pain in the ass when you’re blind and use screen reading software. It takes ten times longer to suss a thing out. “Let’s put on a show,” is what social psychologists are always preaching: become a volunteer, join a church, just get out more.

I suspect even Mickey Rooney would agree it’s hard to feel useful or agreeable if no one wants to put on a show. In today’s version Rooney would leap to his feet, make his suggestion, and everyone would be looking at his or her phone in collective silence.

Here’s the thing. If you’re visibly disabled you’re always putting on a show. You leave your house with your wheel chair or your guide dog and there it is! The play’s the thing. You’re the bit actor in a centuries old play called “A Long Day’s Journey Into Normalcy” and your part is to stand for deviance and abjection even as you manifest a hundred competencies and social dexterities. And of course you’re often the sole proprietor of this production. You work amongst non-disabled people, ride the bus with them, etc. And yes, it’s really true, you’re the off Broadway diversion du jour.

Some days I’m really unable to play the role and prefer to stay at home.

You have to laugh. Poor normals. Addicted to imagined perfections that have already beaded them and which, if allowed to fester in the noggin will lead to ever increasing despair. The normals who will spend their adult lives desperately trying to stave off har loss, neck wattles, acid reflux, widow’s humps, corns, callouses, hangnails, all while hoping to be mistaken for a tv star. At least a cripple is a solid deviant and the advantage is ours. There ain’t no normal everyone’s got hammer toes.

Let’s put on a show.

You’re the guy with a dog riding the old wooden escalators in Macy’s Department Store, while a hundred people stare. “I feel like I have a fried egg glued to my forehead,” I once said to my wife as we were navigating an airport. “You do,” she said. You can count on your spouse. When I think more deeply about this I think in terms of history. I belong to the first generation of public disabled. We’re not in the institutions. The laws of the land welcome us. Of course I’ll be stared at. 100 years from now, when everyone will have wild looking quasi-electronic rubberized appendages attached to their bodies this era will seem like ancient history. I hope for that.

Meanwhile one walks about. You’re clearing the road for others who may follow. I often think about the business of clearing. I’m not just asserting a right to inhabit public space for the disabled but for all my brothers and sisters who are still outsiders.

I took to whispering into my guide dog’s ear: “What’s an outsider?” Perhaps being a pack animal she knew, but she only said: “It’s something in the past.”

Dogs eat grass, just to know what’s in it. They eat the past. A lesson. Get over yourself.
And you do for a minute. You imagine you’ve eaten the grass; the here and now has fallen; you can taste a pure democracy. But the here and now is like rain at the windows, just persistent enough to haul you back from utopia. You’re in the Seven-Eleven again, being stared at by absolutely everyone. “What’s that man doing?” says a child to its mother. “Shush,” says the mother. “No Mommy! What’s that man?” “Shush,” she says, “Or there’s no birthday for you!”
You’re innocent. You are standing beside a rack of Twinkies and Hohos, just trying to figure out where the coffee is located, and now you’re the un-indicted co-conspirator behind the ruination of some kid’s birthday, all because you entered the damn store.

“You’ve entered the damn store” became my personal tag line. My father who served in World War II used to say, “You’re in the Army now, you’re not behind the plough….” His way of saying you’re screwed and just get over it.

In Macy’s I was once followed by a store detective. I was walking just to walk. Working my dog around mannequins and racks of clothing, mostly because it was something to do and it was a good exercise for the dog, and you know, what the hell. Sam Spade was about ten feet behind me wherever I went. What’s an outsider? He’s whatever they say he is. He doesn’t look like the other crayfish. Let’s eat him.