Author: stevekuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

Disability and Your Own Left Foot

Yes, there’s an allusion to the Christy Brown story in my title. Sure. And the implicit inquiry is about the complicity index–whether you have a disability yourself or you don’t, my question is about the stance you take on advancing the cause of pwds.

On Sunday morning in New York City, outside of Macy’s, I tried to get a cab. Predictably a driver refused to take me because I had a guide dog. Nothing new there. Before he drove off he gave me the ” stink eye”.

But then a cab pulled up and the driver invited me aboard. He said: “Someday that guy will need a dog and then he’ll know what it’s like.”

Your own left foot is nothing more than the golden rule. You can do anything with it. No socks necessary,

Cindy Sherman, Everywhere

I went yesterday to the Museum of Modern Art to see their big exhibit of photographs and photo montages by Cindy Sherman. Ever helpful old friend "D" by my side…certainly the visually impaired exhibit hound can use some inspired kibitzing when at the museum. Mostly I'd trouble the guards by leaning as close as I could, getting my nose just inches from the works. & by turns much of Cindy Sherman's work demands standing at a distance.

 

Her work is aggressively homely–her oeuvre, stylized, tricked out self portraits that feel like grand guignol meets the city of the Etruscans– every version of Cindy is overly determined, too much makeup, fright wigs, haute couture gone to seed, Miss Havisham shopping on the upper East side and the daylight that illuminates her, unmerciful.

 

So affecting is Cindy Sherman that she colonizes everything you subsequently see. Leaving MOMA we saw massive window advertisements at the children's GAP and Lo! The "tween" girls presented there, as if dressed for spring, looked starved and looted, just as any of Sherman's steroidal, late Capitalist self-portraits. All day Cindy Sherman was everywhere, casting a pall over the optimism of Fifth Avenue.

 

 

New York City in the Rain

There's an abandoned rolling suitcase in the gutter, the whole thing covered with masking tape. There's a bored traffic cop, dressed in a dayglo lemon windbreaker and escorting children across fifth avenue at 61st. There's a tourist couple, likely in their sixties, both slim and urbane looking, both admiring my guide dog Nira. The husband says: "She's a keeper!" The dog and I smile. It's true that people and their dogs can smile in unison. This is not a trick of the light.

It's the eve of St Patrick's Day and the day feels like Irish weather–it's a "soft day" and early spring. We walk in Central Park and the air smells of new green, the advance of green, a scent like rain and wool. Nira is happy. A big dog wagging her tail in the morning mist…

Ashley Treatment on the Rise

From The Guardian:

" A controversial procedure to limit the growth of severely disabled childrento keep them forever small – which ignited a fiery debate about the limits of medical intervention when it was first revealed five years ago – has begun to spread among families in America, Europe and beyond.

The Guardian has learned that at least 12 other families have carried out or are in the process of undergoing such medical therapies. The total number of children who have been administered with hormones to keep them small may have reached more than 100 and interest among families extended into the thousands."

When Ashley's parents first announced that they had subjected their daughter to growth attenuation I wrote about the matter on this blog. I still believe that the "procedure" is unethical, not merely because I am a self-avowed disability rights advocate, but because I suspect that the whole matter violates the first rule of medicine, which as everybody knows it to "do no harm."

Removing the breast buds from a little girl, removing her uterus, and injecting extremely high levels of hormones into her body is in fact a medically unproven series of procedures. It will keep a child small, but it will also likely yield side effects. The latter are considered easy to dismiss since the children who undergo such procedures are mentally deficient, as the vernacular would have it. My take is that human beings are not ever fit subjects for experimentation which is, in the final analysis what this oddly utilitarian treatment is all about. The argument is tautological in the extreme: "my child will become a big person and then we won't be able to take care of her" leads to: "If she stays small forever then we can easily look after her." In turn, the subtext for this is: "Well,yes, she will have a shorter life perhaps, but how wonderful it will be to keep that life conveniently tiny." This is of course about convenience. Since all peopld with disabiliies are inconvenient in a normalized society, perhaps they should all be artifically modified. Perhaps the elderly should be subjected to amputations so they will fit into ever smaller boxes?

The argument for the Ashley treatment remains suspect in my view. I'm not alone.

Clubfoot

By Andrea Scarpino

Lord Byron apparently was born with a clubfoot. I know this because I attended a poetry reading last weekend in which a poem about Lord Byron’s clubfoot was read to much hilarity. The poem was clearly over-the-top, intended to illicit humor from the audience, and contained a refrain that went something like, “His foot, his foot, his awful gimpy foot.” Each time the poet repeated the refrain, his voice grew deeper, more obnoxious, clearly begging for a laugh.

I sat in the audience and glared. I was born with bilateral clubbed feet, treated at first with stretching and casts, then with surgery and braces. I have long scars on my heels where doctors finally surgically lengthened my Achilles tendons, and small round scars below each ankle where pins were inserted to hold each foot in a stretched position. As a child, friends mocked me for my scars, and even as an adult, strangers still stop me in the street to ask about them.

I knew the poet wasn’t trying to make a political statement, wasn’t trying to make me uncomfortable, but I also know that clubfeet are incredibly common—one baby in 1,000 is born with clubfeet. And most of those babies will grow into perfectly healthy, active lives. Proof? Kristy Yamaguchi and Mia Hamm.

Of course, Lord Byron didn’t have a plethora of treatment options and apparently suffered tremendously because of his clubfoot-induced limp. Just as people born without access to medical care still have limited options. To me, this isn’t something about which to laugh. Rather, it’s a reason to reflect again upon the ways in which “normal” and “abnormal” are culturally constructed, how the inevitability and normalcy of disability are carefully hidden, how “normal” bodies are privileged, how a clubfoot is still a mark of defect, humor, and shame.

Remember, clubfoot is common among newborns—some 7 million of the world’s people were born with at least one clubfoot. So clubfoot is a more common “condition” than being a billionaire (there are only about 1200 billionaires globally). What if we conceived of clubfoot as a normal variation of human physiology, and of billionaires as abnormal and defective? How would our thinking change then?

If we lived in a culture in which disability wasn’t openly ridiculed, treated as inconvenient, or used to other, then maybe the poem would have been funnier to me. But we don’t. So when a poet stands on stage and openly mocks a physical condition, openly shames another person for his walking gait, it’s challenging for me to find humor in the situation.

Instead of laughing, I glared. Instead of laughing, I thought about my scars, my tendons, thought about resiliency, how many variations of the body exist. Instead of laughing, I wondered how many in the audience had visible or invisible disabilities, how many would be considered “abnormal” by someone else, by someone else’s measuring stick. Instead of laughing, I thought about Lord Byron, wished we could have swapped stories of our feet, our feet, our crippled, ugly, mangled, grotesque feet.

No Swimming Allowed: Phone the White House

From the AAPD:

The Department of Justice Title III regulations regarding accessible entry and exit from swimming pools and spas is scheduled to come into effect tomorrow, March 15, 2012. Unfortunately, however, after the DoJ sent a letter to the American Hotel and Lodging Association last month with information about how pool owners could come into compliance with this requirement, the hotel and lodging industry reacted negatively and made phone calls to Congress and the White House asking them to postpone implementation of the rule.

In response to that pressure, the Obama administration is planning to ask the Department to postpone implementation.

Call Kareem Dale, Special Assistant to the President for Disability Policy TODAY at 202-456-6726 and ask that the White House support the Department of Justice’s swimming pool regulations and not try to postpone implementation of this rule.


There are a number of reasons why postponing implementation would be bad for people with disabilities, including:

  • People with disabilities should have the same access to recreational and exercise opportunities as everyone else.
  • Backtracking on the ADA is never acceptable.
  • The requirements of the ADA should not be postponed for one particular type of accommodation. It sets a bad precedent.
  • The ADA was signed into law 22 years ago. Swimming pool owners have had decades to come into compliance.
  • The Title III regulations have been going through the regulatory process since 2004.
  • The final regulation language and the accessibility standards have been out since September 2010, so the pool owners have had 18 months to comply with those specific standards.
  • The regulations are subject to an “undue burden” defense, so any hotel or pool owner that cannot afford to come into compliance need not do so immediately.

Call Kareem Dale, Special Assistant to the President for Disability Policy TODAY at 202-456-6726.

Blocked Wheelchair Access at Polling Place is a Clear Violation of the ADA

City Official Says Voter’s Ramp Complaint Is ‘Politically Motivated’

(WDEF)
March 9, 2012

TURTLETOWN, TENNESSEE– [Excerpt provided by Inclusion Daily Express] The votes are counted and the winners are known in yesterday’s election.

But not everyone got a chance to cast a ballot.

A disabled Polk county man says he couldn’t even get into his polling place, and he’s going to file suit.

Jack Collins of Turtletown says he’s never had the problem before — he arrived as his polling place and discovered a big obstacle for him and his wheel chair right outside the door.

He came back today to have another look at the ramp leading to the front door.

“I can’t go up the ramp . . . “

Collins cites the 20-year-old Americans With Disabilities Act.

Entire article:
Polk County Voter Angry About Wheel Chair Ramp
http://tinyurl.com/ide03091205a

Dharma Prose Early Morning

The yard was full of tomato plants about to ripen, and mint, mint, everything smelling of mint, and one fine old tree that I loved to sit under and meditate on those cool perfect starry California October nights unmatched anywhere in the world. We had a perfect little kitchen with a gas stove, but no icebox, but no matter. We also had a perfect little bathroom with a tub and hot water, and one main room, covered with pillows and floor mats of straw and mattresses to sleep on, and books, books, hundreds of books everything from Catullus to Pound to Blyth to albums of Bach and Beethoven (and even one swinging Ella Fitzgerald album with Clark Terry very interesting on trumpet) and a good three-speed Webcor phonograph that played loud enough to blast the roof off: and the roof nothing but plywood, the walls too, through which one night in one of our Zen Lunatic drunks I put my fist in glee and Coughlin saw me and put his head through about three inches.

–Jack Kerouac, “The Dharma Bums”

One thinks of Jack Kerouac as an “enfant terrible” for that’s what the fifties media made of him–the only kindness the man ever received in New York came from Steve Allen–and so only those who loved the lyric or who still love it understood or still appreciate the shy, clear, emotional candor in his writing. The narrator of “The Dharma Buns” possesses much heart and has a good eye. But he has something more: when he’s in a place he’s really in it.

The sun isn’t up yet here in upstate New York. There’s a steam pipe inside my kitchen wall that sounds like a song in a dream–maybe someone else’s dream–it would be the first thing you’d hear as you took the hand of the sleeper beside you. It makes a sweet, three dimensional sound like the needle on a gramophone or the hollow realizations of a stethoscope. From such small evidence we know it’s fine to be alive, to have tried it out.

Essay: Dreaming in Public

 

The world does not come to its own rescue. 

There are tears only dogs can hear, thick planetary sobs. 

Meantime in the streets you see the troublemakers, loudmouthed, shifty, exclaiming all manner of things. 

Everyone has a tinge of death under his coat. 

Lately I have received letters from strangers. They read what I post on the internet.  

A man from Africa writes that his wife died young & had a terrible disability. Now, alone, he is nearly homeless. 

What use, the alien flowers? We can still weep in the public gardens. 

I used to go to the Botanical park in Helsinki. Once, it was owned by the Czar of Russia. No tears were allowed there in the old days. But I would weep among the flowers. 

Blindly the wilful soul asks for hope. 

& the earth sends us tears, even under the garden’s grillwork gate.