Monday, July 14, 2008

July 14: Woody Guthrie (1912-1967)

[Image description: Woody Guthrie, guitar in hands; guitar displays a sign that reads "This Machine Kills Fascists"]

"The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because, largely, about all a human being is, anyway, is just a hoping machine."
--Woody Guthrie

Legendary American folk singer and songwriter Woody Guthrie was born on this date 96 years ago, in Okemah, Oklahoma. At age 52, he was picked up for vagrancy in New Jersey, and alcoholism or schizophrenia were suspected as underlying causes of his increasing erratic behavior and health changes. But at the Greystone Psychiatric Hospital he was instead diagnosed with Huntington's Chorea (now known as Huntington's Disease)--an incurable degenerative neurological condition. He died thirteen years later, at a state hospital in Queens, NY. Guthrie's ex-wife went on to work with other affected families on securing funding for research into HD.

This birthday gives me an opportunity to mention Alice Wexler's new book: The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease (Yale University Press, available September 2008) takes the story of Huntington's in America back long before Woody Guthrie, to the early 19th century, to the communities on Long Island where HD was a familiar reality in many leading local families. She follows the story of the disease through generations, through the eugenics era (where HD's strong genetic pattern made it an obvious subject of study), and into the present of genetic technology.


Disability Blog Carnival #41 is up now!

[Image description: Disability Blog Carnival logo, featuring a patent drawing of a torso bracing device, with the words "the Disability Blog Carnival: A Bracing Event" superimposed in blue]

Retired Waif has posted the 41st edition of the Disability Blog Carnival, with the title "Death Becomes Her." Longtime Carnival readers may remember that the last time Retired Waif hosted an edition, she was nearly in labor (literally, reporting possible contractions in the course of the post itself!). This year, the theme is end-of-life issues: "It isn't nice and sweet, this carnival," she explains in the introduction. Indeed--but it is full of links to thoughtful, ambivalent, resolute, defiant, questioning, and wise posts, so settle in and have a read.

Next edition is scheduled to be hosted by Greg at Pitt Rehab on July 24, and he's requesting your stories about "a memorable summer vacation/adventure/ordeal." Hm, I foresee a whole new definition of "summer break," and a swarm of jellyfish stings, airport mishaps, and sunscreen disasters. But then, I'm starting to look forward to September already.... Submit via any of the usual channels--the blogcarnival.com form (but beware the Captcha--still not accessible, grrrr), in comments here or at Greg's blog, or just put the phrase "disability blog carnival" in your post, and we'll probably find you somehow.

Sunday, July 13, 2008

July 13: John Clare (1793-1864)

[Image description: Engraved portrait of the poet John Clare, shown with tousled hair, wearing a suit with a heavy coat, vest, and a shirt loosely tied up with a print kerchief]

English poet John Clare was born on this date in 1793, in Helpston, near Peterborough. He was the son of a laborer, and himself a laborer, a gardener, who wrote poetry when he could, to be published by an acquaintance. His earnings were never enough to adequately support his wife and seven children (and his alcohol consumption); he experienced depression and later erratic behavior. In 1837 he was placed in a private asylum. After four years, he tried to live at home again, but his wife soon committed him again, this time to the Northampton General Lunatic Asylum, where he eventually died in 1864. It was at Northampton that he wrote his best known poem, "I Am," reflecting his sense of being abandoned by friends and loved ones, his vivid torments, and his longing for rest, "untroubling and untroubled."
I AM
John Clare


I am; yet what I am none cares or knows,

My friends forsake me like a memory lost;

I am the self-consumer of my woes,

They rise and vanish in oblivious host,

Like shades in love and death's oblivion lost;

And yet I am! and live with shadows tost


Into nothingness of scorn and noise,

Into the living sea of waking dreams,

Where there is neither sense of life nor joys,

But the vast shipwreck of my life's esteems;

And e'en the dearest--that I loved the best--

Are strange--nay, rather stranger than the rest.


I long for scenes where man has never trod;

A place where woman never smil'd or wept;

There to abide with my creator, God,

And sleep as I in childhood sweetly slept:

Untroubling and untroubled where I lie;

The grass below--above the vaulted sky.

Friday, July 04, 2008

July 4: Christine Lavant (1915-1973)

[Image: Black-and-white photo of a woman, Christine Lavant, wearing a headscarf, gazing at an empty glass of tea on the table she's seated behind]

"Illusions, to be sure, are safe, are precious, but the truth is

usually more important."

--Christine Lavant

Austrian poet Christine Lavant was born on this date, the youngest in a big family based in a Carinthian village. Her father was a miner, her mother a seamstress. Christine was sick a lot as a kid--one infection damaged her vision when she was an infant, another made her deaf in one ear as a teenager; her face and neck bore the scars of experimental x-ray treatments; tuberculosis and depression were also in the mix. At 20, she was hospitalized for six weeks after a suicide attempt; in 1946 she recorded the experience in "Memoirs from a Madhouse," but wouldn't allow its publication until decades after her death. It's now available in an English translation (Ariadne Press 2004).

Lavant became a highly respected poet in Austria, and won the Grand State Prize for Literature in 1970. One of her short stories, "Das Kind" (1948) is about a hospitalized child, bandaged, confused, lonely, dreaming of her family. Her 1956 volume of poems, Der Bettlerschale (The Begging Bowl) reflects her themes of need, abandonment, alienation, and melacholy. A 1978 collection of her poetry appears under the title Art Like Mine Is Only Crippled Life (from a quote by Lavant). There are English translations of a few Lavant poems here and here.

Thursday, July 03, 2008

July 3: Nancy Mairs (b. 1943)

[Image: Cover of Nancy Mairs' collection of essays titled Waist-High in the World: A Life Among the Nondisabled (Beacon Press 1996), featuring a close-up of a woman's belly with her hands clasped across it, a detail from Botticelli's "The Birth of Venus"]

"You know, if things are flashing by you, you don't have time to contemplate them and cherish them, you don't know that you're not doing it. And that's part of the reason why I refer to people that other people may refer to as able-bodied, as non-disabled. Because they lack disability. They have a whole element in their lives that they lack. And I have that element in my life. Because I wasn't born disabled, I also have grounds for comparison. I started my life as a non-disabled person, and I know my losses very sharply -- very painfully -- but I also know my gains."

--Nancy Mairs, from the 2005 PBS documentary project "& Thou Shalt Honor," about marriage, aging, and carework

Wednesday, July 02, 2008

Edna Knight, MBE!

From a parent support newsletter I got this morning by email:
We are thrilled to announce that Unique Founder & Life President Edna Knight has been made an MBE in the Birthday Honours List 2008. Having founded the group in 1984 with 5 families, Edna has been a major driving force in its development. The award is for voluntary services to people with a chromosome disorder and their families. Congratulations Edna on a richly deserved award.
I joined UNIQUE when my son was just a year old--because he has a rare chromosome disorder, and way back then (I mean 1996), there were no online discussion boards or blogs or listservs for families to meet each other and learn from each other. At the time, UNIQUE didn't have a way of collecting subscription fees in US dollars, so they just sent me the newsletter for free, for years. It was something amazing at the time, to see the founder's letter on the front page, and discover that she had raised two daughters with rare chromosome disorders (and two without, as well)--they were all adults by the time I subscribed, and just finding that they were living and thriving young women was a huge encouragement when I was first starting out. UNIQUE expanded my understanding of what was possible, and what was happening in the world, when I might otherwise have felt very isolated and fearful. So congratulations, Edna Knight!

Tuesday, July 01, 2008

Independence, too much of a good thing...

I've been thinking of this topic for a while, but in some convoluted way, maybe it will be timely for me to write about it as Independence Day is approaching.

It is not a secret that the notion of independence for people with disabilities is a branch of the more traditional western ideologies of independence. When I would hear this line of reasoning I couldn't exactly appreciate the rationale behind it but the more mature (notice I didn't say older) that I become my remaining brain cells seem to be able to make the connection. Rugged individualism and Darwin's survival of the fittest unquestionably underlies the rehabilitation model of disability. The mantras which are osmotically filtered through rehabilitation centers and vocational rehabilitation offices include sacred words such as productivity, goal attainment, self sufficiency, etc. There are even scales to measure one's status in each of these areas as if productivity is a fixed concrete universal indicator. It is curious how serious these abstractions are taken. Not even one's vital signs are expected to as static and predictable.

In thinking about independence and the importance that is placed of this ephemeral state, it dawned on me that it is not only at the crux of rehabilitation philosophy but it is also embedded in a different way in consumer advocacy. Independent living is a philosophy that over the years has become a regimented mode of living not so much from an imposition of the advocacy community but more so from each individual who imposes standards of independent living on their own life experience.

One of the most difficult acts that a person with a severe disability must do is admit that they need help especially if it is outside of the realm of what they have been proven capable of doing themselves. We who have grown up in the independent living movement which started in the late 1960's feel that we are obligated to live up to and live in to what we so undauntedly advocated. Sometimes, lying in my bed in my own apartment I think to myself "this is what I so strongly fought for... the opportunity to live alone, to not always be able to perform natural bodily functions in a timely manner and above all the fact that my family could say yes, my sister lives alone and doesn't need help from us." If this is sounding a bit sarcastic, it is not meant to diminish the hard earned supports and services that allow people to live in a community. Neither is it meant to cast a dark shadow on the basic principles of one living as autonomously as they wish.

So what is my post intended to evoke or to inform? I guess the fact that many of us with disabilities strive so unrelentlessly to attain a goal that in many ways becomes a little murky. Independence should not mean always needing to be in control, to be the best at one's game, to never "bother others with our needs as if they don't exist because we have gone through the metamorphosis of becoming independent." The more I learn about other cultures, the more I reflect upon the beauty and cohesiveness that is a result of family and community, the reciprocity and healthy art of being cared for and caring for another. Well, doesn't that sound radically and wonderfully refreshing?