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.  

 

Intimate News



–after Borges


I was walking in the garment district of Manhattan, making my way down the
shady side of the street. I was careful in the way of all blind people
since I couldn¹t tell the pavement from the sky, couldn¹t find the bottoms
of puddles.


Being blind is, finally, to become a kind of working angel: life graces your
desires but you must keep moving.


Then my guide dog walked me around a dress maker¹s dummy. I thought how
the womanly torso and the darkened man were both pared to their essence:
she swayed in wind and traffic, I dipped in the weighted seconds.


Androgynous couple, we respectively saved reality¹s honor.

On Being Avuncular

By Angel Lemke

“[I]f having grandparents means perceiving your parents as somebody’s children, then having aunts and uncles, even the most conventional of aunts and uncles, means perceiving your parents as somebody’s sibs–not, that is, as alternately abject and omnipotent links in a chain of compulsion and replication that leads inevitably to you; but rather as elements in a varied, contingent, recalcitrant but re-forming seriality, as people who demonstrably could have turned out differently–indeed as people who, in the differing, refractive relations among their own generation, can be seen already to have done so.

—Eve Kosofsky Sedgwick

“Tales of the Avunculate: Queer Tutelage in The Importance of Being Earnest


For a host of reasons outside the scope of this post, I spent very little time with my biological aunts and uncles during my childhood. Still, there were other important adults in my life besides the biggest influences of my mother, grandmother, and teachers. This group was pretty much exclusively composed of my mother’s friends.

I guess it shouldn’t come as such a surprise that when my relationship with my mother turned sour, they all disappeared. They were, after all, “hers.” But as I was growing up, they were occasional babysitters and frequent dinner companions; many of them attended my high school graduation; some of them sent me little care packages when I was away at college. I had conversations with all of them that did not involve my mother. I thought they were at least a little bit “mine,” too. But other than our now-routine Facebook birthday wishes, I haven’t heard a word—not one word—from the adults who peopled my childhood. Were it not for my grandmother and maternal aunt, I would now have absolutely no connection to the adults around whom I grew up. In freeing myself from one toxic influence, I lost a whole generation of elders.


I’ve become avuncular myself over the past couple years, as I’ve reached the age when many of my peers are parenting young children, and as I’ve consciously sought out more connections with kids, given that the odds of my parenting my own children are steadily declining with each passing day. No matter how dear their parents may be to me, I can’t imagine that if I learned, thirty years from now, that one of them was no longer on speaking terms with her mother, or that one of them was in financial distress after an emergency spinal surgery and two years of unemployment, I wouldn’t at least drop a note to say, “Geez, kid. How ya holdin’ up?”


One friend of my mother’s has checked in with me over the past six months; she first met me as an adult, just a couple years ago. I have to wonder if this doesn’t have something to do with it, that in her recollection, I was always an adult (read: person). For everyone else, I am “Jean Ann’s kid.”


I don’t know why, but that seems to make me somehow none of their business.

The other day, I recalled sitting on my grandmother’s front porch as a young adult, arguing with my mother about her controlling ways; one of her friends was there, too, a friend who had long been my favorite and who I thought—and still think—to be one of the most reasonable adults I’d ever known. I appealed to her to support my claim that my mother was being manipulative, offering example after example of ways she’d constrained or attempted to constrain my passage into adulthood. She listened and nodded and even tried to recast what I said in terms that my mother could hear, but she never, ever said, “No, Jean Ann. You’re just wrong. I disagree with how you’re treating this kid.” Later, when I tr
ied to recall the support sh
e had offered, my mother said, “I asked her about it later, if she thought you were right, and she said she didn’t understand what you were so upset about.”


There’s a very good chance that my mother’s representation of that latter conversation is distorted, that the friend in question chose to exercise careful equivocation rather than selling me out wholesale, but I felt then, and feel that much more now, the absence of another adult saying, “No, this is wrong.”


An old friend of my generation, remarking on the breakdown of my relationship with my mother, said, “Well, it seemed like you and your mom were always fighting, but this is different.” The truth is, it wasn’t; the only real difference was my willingness to stop thinking that she could be convinced by me, by her friends, by the passing of time, to treat me differently, to treat me as a person rather than as a possession. It had been going on my entire life. And in greater and lesser ways, all of the adults in our world knew it. I wish one of them had done more, and done it before I was grown.

bell hooks writes, “Childrearing is a responsibility that can be shared with other childrearers, with people who do not live with children. This form of parenting is revolutionary in this society because it takes place in opposition to the idea that parents, especially mothers, should be the only childrearers.” Claudia Card builds on hooks to argue that such “revolutionary parenting” is “an alternative to mothering as a social institution.”


Many feminists approach the institution of motherhood in terms of injustice toward women, their “second shift” duties and such; what hooks and Card foreground is the injustice done to children when the responsibility for their well-being is vested in one other human being—or at best, two. As the title character of About a Boy says, “two people isn’t enough.” With more than two, as in that film, the effects of my mother’s mental illness on me would have been drastically mitigated. If only because I might have felt less alone.


I usually think of my own role as an other-adult in the lives of the children I love as something like Sedgwick’s formulation above, as one of the many people they can choose to use or not use as a model, as offering them the lesson that there are options other than replicating your parents, and that you don’t have to choose one or the other, but can sample from all. Most of the kids I see regularly have pretty good parents, all things considered, so I don’t imagine they need me as their protector against parental injustice. Most of the kids I see regularly have parents that seek out other opinions about the best way to raise their kids, who actively provide their kids with a range of adult role models.

Still, one of the lessons of this last year is undoubtedly about being a better elder than many of the ones I’ve known. And for me, that has to mean that my avuncular responsibilities must begin and end in a recognition of my nieces and nephews as people rather than as someone else’s kids. People for whom I will stand up, even, if need be, against their parents. If only so that they learn it’s an option, that there are people who will stand up. If only so that that, whatever other options they take from this other-adult, they know that this is the kind of people I hope they all become.



About the author: Angel Lemke has always relied on the kindness of strangers, which seems to work out a lot better than you’d expect.