Even Julie Andrews Isn't Julie Andrews Department

Our friend The Goldfish writes with dignity about the pervasive and daily effects of ill health. Lots of us with disabilities as they’re collectively known are the people or persons of The Goldfish  Tribe. I have a friend and colleague here in the creative nonfiction writing program at the U of Iowa who has a serious chronic illness and she’s often exhausted and unable to leave her house. I told her how blindness leaves me wiped out and that sometimes I feel like one of Mario Puzo’s characters in The Godfather who has gone into hiding by “going to the mattresses”.

We Pwds “go to the mattresses” and we rise from them again with a helluva lot of brio and steadfastness. We raise kids and attend meetings and we take longer to clean the house but we feel the drifting and incandescent seconds as joys without easy analogies and we get on with our business.

This is the irony of disability: the ableists imagine Pwds as being child-like when in fact we’re the older people, the ones who still remember that hourly or minute by minute steepness remain central parts of life.

I was talking in my writing class on Thursday about Thomas Jefferson who as  a comparatively young man fell and broke his wrist while traveling in France. The crude local doctor made the break even worse and in turn Jefferson never regained full use of his hand. And we know that the hand never stopped hurting. And we know that Jefferson never spoke of the matter. He gave up his beloved violin and that was that. Stoicism vanishes with the commercial advent of aspirin in the 20th century. People seem to think that a 0 degree of pain is what its all about.

Well you can’t fool the People of The Goldfish Tribe. We have night sweats; aching joints; asthma; burning eyes; dizzy spells; skull ripping headaches; jitters; snapped bones; paralysis; Rococo fatigues; grasshoppers in our pillows; crickets in our milk.

Sometimes we just sneak away from the party, the dinner, the convocation, the whole damned dog show and we go to the mattresses.

 

SK

No More Mr. Nice Guy Department

Its safe to say that when nice guys take off the gloves people are aghast. Remember in the movies when people were aghast? A cry would go up, something more than a murmur but less than a scream.

Back in the primary campaign pundits and voters were aghast when Bill Clinton went snarly. He had turned into Bubbastein right before our eyes. Whatever happened to our Oxfordian Fat Elvis who felt our pain? Down there in South Carolina he was seen comparing Barack Obama’s success to that of the REv. Jesse Jackson and he was showing his teeth, oh yes.

Sometimes nice guys just get off the rug. They decide to let their inner backwash out of the drain so to speak. No one really knows why they snap. Something happens to their super egos and you can blame it on heavy drinking or the tabloid press but this doesn’t explain the Nice Guy Next Door who formerly was known for smiling and waving and who now gives people the finger. At cocktail parties they say: “He was always such a nice guy. But now he gives you the finger!”

Oh its a dark world. The Nice Guy Next Door is whipping up a good old fashioned case of Greco-Roman malevolence. He’s going to put salt on the fields. He’s going to stop shoveling his portion of the sidewalk just to watch you fall. He will say you are inferior much as Athenians said the Carthaginians were weak. The Nice Guy Next Door doesn’t need social Darwinism because now that he’s no longer nice he doesn’t need to believe in advantages or “goodies” for a select few, he just thinks the whole world is a pis pot and he’s heading for the covert even if its just the basement.

The whole business is a kind of anti-conversion; there’s no transubstantiation just inter-substantiation–one minute he was nice and now he’s a scab picking, lightbulb stealing, window soaper. He’d soap the windshield of an ambulance if he could find one.

So here’s my argument: Americans don’t take disappointment very well. In our mythology we are a nice nation as we stand in bread lines or whatnot, but in truth when things go poorly in the land of milk and honey the Nice Guys and Galsshow their refined teeth very quickly. Teeth are a metaphor and dont you forget it.The Haymarket riots and the burning of our cities in the late sixties offer the ugly teeth of the last century when in both instances people felt raw despair.

Last week over 30,000people filed new jobless claims. That’s over 1.7 million unemployed people if the pace keeps up over the course of the year.

Imagine all those formerly Nice Guys and Gals who aren’t in the neighborhood anymore. The GOP is currently arguing up on Capitol hill that we should be spending less on the national recovery and cutting social programs and cutting taxes and apparently they don’t live in genuine neighborhoods where one can see Nice Guys and Gals feeling seriously inter-substantiated into ever smaller and meaner versions of themselves. Capitalism is only worth its cultural glory when it creates jobs.

Not even Nice Guy Obama knows how to make jobs without social programs and investments.

And I for one wouldn’t want the Nice Guy in Chief to get inter-substantiated anytime soon.

 

SK  

Science and Poetry

I have several friends who are physicians and scientists and lots of friends and acquaintences who are writers. Sometimes the two groups meet in my presence like two wandering tribes who have been traveling a long way across the steppes of Russia. You can always tell these tribesmen and tribeswomen apart because the scientists dress like beach bums (many continue to wear shorts even in Iowa in January) and the writers dress entirely in black as if they’re all undergraduates at Bard College. There are some exceptions. A doctor I admire may wear a Republican blue blazer and chinos; a poet might wear a baggy sweatshirt declaiming Boston Celtics. Over time I’ve come to see that neither group has any taste. But this shouldn’t be a surprise since the life of the mind ought to be less commodified as Albert Einstein so aptly demonstrated every day of his life. That none of my friends resembles Albert Einstein might be a problem. I haven’t had time to consider this. I imagine we should all look like Einstein: both men and women. I think I would have trouble growing the moustache. Well that’s not quite true. I could grow it but I couldn’t keep it tidy. Einstein probably didn’t care whether is moustache was tidy. I care. I have to draw the line somewhere. I like having clean lips. A friend who belongs to the writer group once remarked that he thought he saw the living incarnation of Walt Whitman eating spanokopita at Roditi’s Greek restaurant in Chicago. The Whitman look alike had spinach pie all down his beard. I’m betting that the hirsute customer in Roditi’s wasn’t a poet or a scientist but was most likely a retired podiatrist. I can’t explain this. I know some things are true without further research.

Nevertheless I’ve come to see that there’s a philosophical difference between the scientists and the writers. This takes a little time to sus out because at first there’s the wine and the brie; the mutual curiosity about ideas; the discovery that the scientists read widely in literature; the finding that writers are fascinated by science and medicine. A young genetic researcher recites a long passage from Kipling’s “Gunga Din” which is meant to be heard not read and aside from all the colonial sentiments (admittedly a big aside) one feels suddenly disposed toward Kipling who one hadn’t thought about since the third grade when the saga of Riki Tiki Tavi was on one’s mind. (Personally I wanted to become a writer because of Kipling. I decided this when I was 8 years old. Many writers will tell you similar stories while substituting Booth Tarkington or H.G. Wells. 

A doctor recites the prologue from “The Canterbury Tales” and we learn that he was long ago in a life before med school actually an English major. He makes no joke about having come to his senses. He knows the supple discriminations of lingo are central to the mind’s muscularity. He knows he’s a better doc because he’s carrying old rhythms and plots under his white coat and deep in his chest.

A writer says he likes Oliver Sacks and another says he is fascinated by the history of consciousness and the work of Antonio Damasio (who used to teach at the University of Iowa) and still another writer talks with affinity about the history of mathematics.

We talk about the importance of narrative both in scientific research and in figurative language. We talk about narrative medicine and how doctors especially young ones need to hear their patients.

And like Rousseau we drink bordeaux and nibble cheese and think of the mind as a fit gift to the world. We have a log on the fire.

When an evening like this is over I think (as we all do) that we need much more cross fertilization. I won’t say “in the university” because I think that the business of bringing  parenthetically specialized people together is critically important in every social culture we can conceive of. Currently I’m just thinking of my own fireside.

In some respects I think the writers have more to learn from the scientists than they would easily imagine. While this is a generalization to be sure, I’ve seen over time that many writers (in all genres) are quietly and uncritically attracted to what I can only describe as a kind of amateur apocalyptic thinking. They imagine the world is ending. They have the evidence of course. The evidence is overwhelming. Everyone knows the evidence. A very limited undergraduate said to me once and without irony:”It’s all Al Gore’s fault.” He didn’t know what he meant any better than I do but its safe to say that he was talking about evidence. And the trouble with evidence as any reader of crime fiction well knows is that once you’ve dug it up you can’t bury it again. 

The poet Wallace Stevens wrote: “The world is ugly and the people are sad.”  He was incorrect about both the people and the world even as he was undeniably certain how he (as a singular man) felt about both the people and the world. That is, he was correct about some of the people some of the time and some of the world all of the time.

Some. Feeling. One spots the provisional quality of Stevens’ apprehensions. In English departments they talk of subjectivity not just as a condition of the individual but as an inheritance from cultural influences. We are reduced, isolated, made smaller within the mind by the predilections of organized politics, religion, education, and yes, literature.

Wallace Stevens had a lousy marriage, a boring job (he was an insurance executive “by day”), and he studied French modernist poetry and philosophy. Was he sad? You bet. And why not?

Trouble is: way too many American writers and especially writers who make their livings by teaching at universities think like Wallace Stevens. While they may understand the entrapments of subjectivity they easily give in to habits of imaginative limitations.

Part of the reason for this is that contemporary literature is driven by feelings. Fiction is more often than not concerned with failings of families or of communities; poetry is about spiritual loss or the maddening and inchoate quality of language.

It is hard to care about literature that isn’t about anything beyond the artful arrangements of its ingrown despairs but this is mostly what’s going around. I won’t bother with examples. Pick up any literary magazine. Go to a writer’s conference.

Its hard to imagine scientists who believe that the words “feeling” and “some” are sufficient to their work. If you want to cure diseases you are testing every hypothesis and challenging your assumptions. If you love literary language you love it for its aesthetics and you don’t confuse aesthetics with progress.

Of course some writers would tell you that “progress”is a bourgeoise notion thereby dismissing it. Well, one of my friends is close to curing blindness. Stick that in your poetry pipe.

 

SK 

Obama's Economic Stimulus Includes Relief for People with Disabilities

 

During the presidential campaign Barack Obama promised to promote jobs, independent living, and health care for people with disabilities. His  stimulus package which is currently under review in the House of Representatives calls for 20 billion dollarsto address these critical needs. Perhaps the most heartening dimension of the proposed spending for pwds is the funding that is specified to move people from institutions to community living. As the old Sam Cook song says: “It’s been a long time coming…”

Here in Iowa we know that people are being held in hospitals who would prefer to live in their communities.Community is the signature of human identity and there’s a strong argument to be made that community is in the human genome. There’s an equally strong argument that American identity springs entirely  from communitarian values. Restoring citizens with disabilities to our communities is really a matter of living up to our human heritage and our national ideals.

 

Let us hope for swift passage of this stimulus by both houses of Congress.

 

SK

Hiu Lui Ng

At the New York Times one can read the story of Hu Lui NG who was held in custody by the U.S. Immigration Service and although he had a fractured spine and cancer was bodily dragged about by guards and denied use of a wheelchair among other atrocities. And yes the facility where Mr. Ng was essentially tortured to death was a subcontracted private prison, one of the many McJails favored by the U.S. government in these pestilential days of industrial incarceration.

Human rights abuses start from the top. Fish stinks from the head. I hope that as the Obama administration calls for transparency in government that we steady our public nerve and cry out for liberty and justice for all.

In the meantime I had to laugh rather darkly to myself when I heard yesterday on NPR that a group of citizens couldn’t get into the inaugural ceremonies. For a moment I thought that perhaps NPR would cover the fact that people with disabilities couldn’t get in. But no. It was a story about people with fancy invitations on expensive card stock who were locked out of the events because the police were overtaxed by crowds and were unwilling to serve as ushers. The NPR story featured audio of hundreds of locked out people crying “Let Us In!” and I thought: “Well isn’t     that just like the able bodied, complaining all the time.”

Oh how they piss and moan those able bodied people. I mean isn’t it enough we give them everything? Now they want equal access? I’m sick of them! Next they’ll be wanting handicapped parking spaces. Oh? Really? Well then they should just shut up.

Meantime I’m thinking that maybe Dick Cheney can roll on over to his nearest VA hospital in his wheelchair and ask them for a repair just for the full glory of the experience. Its never too late to learn how the other half lives.

Oops. I forgot. Cheney avoided the military during the Viet Nam war. The VA quite properly wouldn’t let him in.

 

SK 

Let's All Take Off Our Shirts

A teacher recently arrested in Fairfield, Connecticut for abusing an autistic child made the little girl take off her shirt in class because she wouldn’t stop scratching. As a local police officer said: “You just don’t do that.” Well yes.

Perhaps we should adopt legislation calling upon teachers to routinely play strip poker in the classroom? I see several advantages to this:

  • Children could learn a valuable lesson about the virtues of giving their clothing to charity.
  • Kids could strut fake tattoos in preparation for their teen years.
  • Teachers could take off their shirts and talk about evolution vs. intelligent design.
  • The whole thing could be  a civics lesson: “we’re all equal in our humiliation” etc.

Of course the story itself reveals the usual problems: teachers without sufficient training, an absent teacher’s aid, and who knows what other systemic suspects.

When I was a kid attending public school I was routinely humiliated by teachers who didn’t want a blind kid in their classrooms. I wrote about it in Planet of the Blind. I’m still working those feelings as a grownup. All children know the usual indignities of playground taunts and the ordinary business of antagonisms with teachers. Such things are the building blocks of consciousness to be sure. But humiliation according to a disability is a form of special cruelty. It should indeed  be a crime.

 

SK

You Can't Make This Stuff Up Department

The news that outgoing Vice President Dick Cheney will attend today’s inauguration as a wheelchair user is certainly ironic given the lack of accessibility that was incorporated in the event planning for citizens with disabilities.

A friend wrote this morning to suggest that Mr. Cheney probably hurt his back while hoisting a box of purloined documents. I prefer to think that he was lifting a box of encyclopedias–you know, now that he’s taking all his money and going to Dubai (wherefrom he cannot be extradited, etc.) he’s going to finish his education. He’s going to read about human rights while sitting in his loaner wheelchair. I just know it.

Make Them Go Away

 

In her book Make Them Go Away disability rights activist Mary Johnson talks about the backlash against persons with disabilities that came on the heels of the Americans with Disabilities Act. While the pace of cultural change is fast and some of her book already feels like an analysis of the 90’s there is no doubt that her prescient and unblinking view of organized ableism in contemporary culture remains entirely and sadly up to date. One reads almost daily of children with disabilities who are subjected to unaccommodating educational experiences; of college students who need to file grievances or lawsuits against their schools because they’ve failed to meet basic minimum ADA requirements; of programs and opportunities for disabled citizens being cut from the diminished rolls of our nation’s remaining social services. It is hard in these times to find a bright spot even as the country looks to Barack Obama for hope and recourse.

But what does it mean to invest in a story? Over the past week I was with lots of talented writers all of whom had their own stories about what’s going on in the world. Many of them without knowing it are convinced the world is ending. This is not uncommon for artists–there’s a considerable history of apocalyptic stories that has come down to us over the millennia. (The Iron Age   Finns thought the sun was about to be stolen by witches and carried away to be hidden forever inside a mountain.)

If a scarcity vision is passively incorporated into the governance of thought then by turns one necessarily becomes what I like to call “sub cartesian” for if “I think, therefore I am” is the incitement of the Enlightenment,then “I Don’t Think, and That’s Enough” is the provisional epistemic nomenclature of a commodity driven amateur gloom –I’m thinking here of Hitler’s description of Germans with disabilities as “useless eaters”. There’s only so much freedom, so many apple pies, so many clean walks to the beach, so many books on the shelves–civics can’t be for everybody don’t you know? Didn’t your mother tell you?

When I search the bare, lamp lit and unfurnished room of my private beliefs I find that I do not believe that the end is coming–nor do I think that a de facto Hitlerite reaction is underway where pwds are concerned in this country. But I do think that this is a moment when the tribes of all disabilities must come together to fight hard for a single cause rather than defending the sectarian coverts of provincial argument. This is a hopeful idea. I hold on to this. I think Mary Johnson’s book needs to be read however. Its good to know who your opponents are.

 

SK 

Ableism is Like Drinking Water

A fellow blogger has written to say that he’s been posting about the inaccessibility of the upcoming inaugural events and that he’s received several hostile comments from bloggers who think that “the disabled” are just whining and should shut up.

Ableism.

Its easy. Its like drinking water. How simple this is.

Such people are actually furious about having to be sensitive about all the other identity categories. They hate having to think about the rights of children (you can’t hit them anymore); women’s rights (soon you will have to pay them the same as men); people of color (defenders of Don Imus or Rush Limbaugh, etc. etc.); forgive me–the list is huge. GLBT haters; ethnic baiters; people who hate the social contract hence they hate the poor. 

But you can still kick the cripples. Tell them to shut the hell up. Take away their accommodations. Shut down their social services even as you bail out the bankers; laugh at depictions of the blind as groping imbeciles on Saturday Night Live; handcuff those kids with LD who didn’t get the services they needed in the first place.

Glass of water.

Ableism is illegal and how they hate it.

In the meantime they take refuge in anonymous blog comments. Shut the hell up you people you! You war veterans; you parents; you children; you who are the friends of such people. This is America! Don’t you know there isn’t enough time to think about you.

Water.

Other people’s civil rights are just “whining” if you don’t believe in liberty.

That’s the final kicker. Ableists don’t believe in liberty at all.

They might as well hate the moon and the stars. The wind off the oceans. Perfect numbers. Silk worms and thermal dynamics.

But you see the point. They need to hate and the circle of liberated culture is   narrowing so terribly fast.

Cripples should stay home where they belong.

Why haven’t they learned that by now?

 

SK

The Ableist's Bible

If you’re a person with a disability you know all about the ableist who has a hundred verses about your life: you are miraculous, inspiring, pathetic, sad, a tabula rasa for mysticism, a burden, a prop on TV, a victim, irascible, triumphant, confined to a wheelchair, a hero…

The ableist can’t see a disabled person clearly. No matter how hard he or she may try their oversized cardboard spectacles make knowing people who are alternately figured just flat out impossible.

You see I’m just alternatively figured. I’m a man with mostly useless eyes who travels with a trained dog or a white stick and that’s really all there is to it. I learned a few things along the way that keep me in the world or mostly in the world.

Because the term disability is a holdover from the industrial revolution it denotes a person whose body is no longer fit for working in the factories. In essence almost no one with a disability is disabled in this way. Unless that person is denied the appropriate accommodation. Disability is to “Alternately Figured” as the moon is to the tides.

When the Obama inauguration planners create inhospitable spaces for the upcoming events in Washington and tell the alternately figured to stay home then in effect they create disabilities where they shouldn’t exist.

This is ableism.

A few nights ago here in Seaside, Oregon a restaurant owner told me I couldn’t come into his sushi   joint with my guide dog. I explained that he was in error about the matter, explained that we should resolve this misunderstanding quickly since if I had to call the police I might then feel like filing charges etc. If that was all there was to the story I wouldn’t tell it. But he went on to attest that the dog’s presence in his restaurant might be problematic for others. “Aha!” I said. “Then you must seat them someplace that’s not in the vicinity of the dog. Guess what? I have civil rights and they don’t depend on the moods of others.”

Ableists believe that the alternately figured are admissable when other ableists feel like it. Ableists are in this way capricious like twelve year old children.

Ableists have an investment in pity though they don’t appreciate the fact. Jerry Lewis is a good example of this since he needs the children who he calls “his kids”to stand as symbolic representations of hapless, wasted lives–Victorian lives that stand in relation to real people who are alternately figured as the topiary garden stands to the savannahs of Kenya–in other words there’s no real comparison. Alternately figured lives are chock full of beauty, intelligence, possibilities, love, and all the virtues. This of course is what   the alternately figured comunity has been trying to tell Jerry Lewis for a long, long time. He has treated them with contempt and that’s a long story too.

The ableist believes that the point of view of the alternately figured is entirely inconvenient.

The ableist you see isn’t in the mood.

Wy would Jerry Lewis hold on to inflexible and outdated positions for so long? I think the matter has a lot to do with Hollywood itself. The long, figurative history of disability in the movies is not a noblestory. Martin Norden’s excellent and groundbreaking book “The Cinema of Isolation” details how from the very infancy of the moving pictures disability has been represented in dark andvery troubling ways.

IN short, Hollywood is a bubble. Ableism lives well under that dome.

That’s an old story too.

The ableist isn’t in the mood to hear you. He’s tired of your complaining. He was trying to do something good for your kind. He was reminding TV viewers that we have to save the poor cripples. The ableist doesn’t want you to mess up his story with the facts. He remembers the good old days when the lights would dim in America’s theaters and there’d be an advertisement for The March of Dimes and there were poster children and the collection cans came around the audience row by row.

The ableist is hurt. He wants to save the crippled children from lives of wretchedness.

He’s not in the mood to hear about your college degree you alternately figured complication you.

 

SK