CFP: Disability and Deafness in Literature for Young People (Journal of Literary and Cultural Disability Studies special issue)

CFP: Disability and Deafness in Literature for Young People (Journal of Literary and Cultural Disability Studies special issue)

Guest editors: Chloë Hughes and Elizabeth A. Wheeler

This special issue of the JLCDS aims to bring together an international and  multidisciplinary base of readers and writers who explore disability in  literature published for young people.

While disability and deafness have often featured in literature for young people, their most usual role has been as a “narrative prosthesis” supporting the storyline. Disability and Deaf literature for young readers has boomed in the twenty-first century, including bestsellers like The Curious Incident of the Dog in the Night-Time, The Fault in Our Stars, Wonder, Wonderstruck, Absolutely True Diary of a Part-Time Indian, and Out of My Mind, as well as a growing collection of texts written in or with Blissymbolics, Braille, Sign Language, or in tactile, textile, interactive, and digital formats. This special issue reconsiders the history and current urgency of disability and deafness in literature for young readers in light of this twenty-first century publishing boom.

Children are often on the front lines of the struggle over the meanings of disability. For young people both with and without disabilities, the works they encounter provide long-lasting frames of reference for understanding bodymind diversity. It is especially important that scholars well versed in disability and Deaf justice, theory, and lived experience critique this canon.

We seek articles on a wide variety of genres, including fantasy, dystopias, science fiction, graphic memoirs and novels, biography, digital forms like blogs and vlogs, “misfit romance,” “sick lit,” and superhero stories. Disabilities that only exist in fictional worlds are fair game. The guest editors are interested in submissions that cross-examine race, class, gender, and sexuality as well as disability and deafness and represent a wide cross-section of international literatures and ethnic groups. We welcome proposals from disability and Deaf studies scholars (especially those who may not have previously written about literature for young people), but also encourage submissions from scholars of other disciplines who might lend their perspectives on using literature for young people with representations of disability to explore bodymind diversity with children and adolescents. We are also interested in intergenerational dialogues, interviews with authors and illustrators who have included protagonists with disabilities or published books for young people in accessible formats, as well as reviews of recently published young adult literature that features protagonists with disabilities. We particularly encourage submissions from scholars with the same disability as the protagonist.

Examples of content foci for this special issue of the JLCDS include, but are not limited to:
• Disabled and Deaf characters challenging normalcy
• Fantastic Freaks and Critical Crips in countercultural texts for young people
• Aesthetic/artistic representations of disability in picturebooks
• Literature for young people by Disabled or Deaf authors and illustrators
• Beyond “narrative prosthesis”
• Children’s and Young Adult Literature in accessible formats
• The role /aesthetics of disability accommodations in texts for young people
• Visibility or invisibility of Disability Rights in literature for young people
• Intersectionality: race, gender, class, sexual orientation, gender identity
• Representations of chronic illness and mental health
• Biographical writing for young people—what is / is not included?
• Critiques of didactic texts for young people on disability
• Interviews of authors/ illustrators
• Reviews of recently published children’s and young adult literature with representations of disability

Timetable:
April 15, 2016: submission of a 500 word proposal for articles or 150 word proposal for reviews and a one-page curriculum vitae to guest editors at hughesc@mail.wou.edu and ewheeler@uoregon.edu.
May 15, 2016: prospective authors notified of proposal status.
November 1, 2016: final versions of selected papers due to editors.
February 1, 2017: finalists selected. Decisions and revisions on submissions sent to authors.
May 1, 2017: final, revised papers due from finalists.

Jo Walton, "Among Others"

I stopped and turned around.  I could feel my cheeks burning.  The bus station was full of people.  "Nobody would pretend to be a cripple! Nobody would use a stick they didn't need! You should be ashamed of yourself for thinking that I would.  If I could walk without it I'd break it in half across your back and run off singing.  You have no right to talk to me like that, to talk to anyone like that.  Who made you queen of the world when I wasn't looking? Why do you imagine I would go out with a stick I don't need--to try to steal your sympathy? I don't want your sympathy, that's the last thing I want.  I just want to mind my own business, which is what you should be doing."

It didn't do any good at all, except for making me a public spectacle.  She went very pink, but I don't think what I was saying really went in.  She'll probably go home and say she saw a girl pretending to be a cripple.  I hate people like that.  Mind you, I hate the ones who come up and ooze synthetic sympathy just as much, who want to know exactly what's wrong with me and pat me on the head.  I am a person.  I want to talk about things other than my leg. (191)

--From Jo Walton, Among Others (Tor Books, 2010), winner of the Hugo and Nebula Awards.

I got this book for Christmas because it was well-reviewed, but I didn't realize how much I'd like the main character Mori, a physically-disabled Welsh girl about my generation (she's a year or two older than I was in 1979-80, when the book is set), awkward and lonely and haunting the local library, reading many of the same books I did at that age (but far more, because I was never a fast reader).  Her disability isn't a main theme of the book, but it's important.  And maybe young and not-so-young readers will learn something from the character's experiences, which are based on the author's:  "all the disability stuff in the book is entirely from experience," Walton told the Guardian.  Another extract:

I found myself being helped down to the car.  That sort of help is actually a hindrance.  If you ever see someone with a walking stick, that stick, and their arm, are actually a leg.  Grabbing it or lifting it, or doing anything unasked to the stick and the arm are much the same as if you grabbed a normal person's leg as they're walking.  I wish more people understood this. (224)

RIP: Reynolds Price (1933-2011)

North Carolina writer Reynolds Price died today, from a heart attack, just before his 77th birthday, according to a Duke University press release and the Charlotte Observer. Here's the birthday post we had for Price at DS,TU in 2007.

BADD: "It will be interesting."

Coming in a bit late for our fifth straight appearance in the Blogging Against Disablism Day swarm. Sunny Saturdays and blogging don't go together in my universe! And this will be briefer than our past entries, too. (Past BADD entries: 2009, 2008, 2007, 2006) Go to Goldfish's complete compendium of links to BADD posts for some much meatier fare.

"If this activation resulted in a living haploid, what would it be like? Probably small, female, infertile. The brain? The body? What right had I to create this entity? I knew it could never be normal, but could it be happy? Could it love? Could it be loved? By me? No doubt the thing could be stopped... somehow.... 'No,' I said, 'I shall let it develop. It will be interesting.'"

--the newly-expecting Mary, narrating character in Naomi Mitchison's Memoirs of a Spacewoman (1962).

For mid-20c. science fiction, Memoirs of a Spacewoman seems to have a refreshing lack of disablism, an unusual openness to disability being an everyday part of the far future. Mary is also that rare mother character that's neither tragic nor hovering nor heroic--Viola (the "haploid") is one of Mary's several children, and when she worries about Viola it's usually for specific reasons, not a generalized "poor baby" attitude. Mary's professional work, studying modes of communicating among non-humanoid life on distant planets, requires her to be especially inclusive in her understanding of differences (across a range much vaster than present-day humans are ever asked to accommodate). And there's some indication that her traveling schedule gives her somewhat flexible expectations about how her kids will grow and change. But one doesn't get the sense that Mitchison means us to see Mary's love and respect for Viola as very unusual for their future world.

I don't read much science fiction these days, but books like this make me think I should go back and re-read some of the short stories from the 1950s and 1960s that I read when I was a kid (in the 1970s and 1980s--I was buying old paperbacks at library sales, thus the lag). What might I have absorbed from those stories, about disability, about normality, about the future and who belongs where? Is the Mitchison novel unusual for its genre and era, or am I presuming too much? Happily, I've discovered that many pre-1963 SF stories are available free, in audio format, from Librivox. So I'm downloading away, grabbing the ones with titles that grab my attention, or the ones with women writers, just to see what I missed or forgot the first time.

"It will be interesting."

PS: While writing this, I found a cite for a recent article about Memoirs of a Spacewoman by a Scottish disability studies scholar; haven't read yet (I intend to, soon), but here it is:

Gavin Miller, "Animals, Empathy, and Care in Naomi Mitchison's Memoirs of a Spacewoman," Science Fiction Studies 35(2)(2008).

(guess I should have looked for it first; I'd hold off and post later, but it's Blogging Against Disablism Day today, right?)

January 6: Percivall Pott (1714-1788)

Observations on the Nature and Consequences of Those Injuries to which the Head is Liable from External Violence To which are Added, Some Few General Remarks on Fractures and Dislocation By Percivall Pott

Doctors sometimes write about or from their own personal medical experiences, because, well, doctors have bodies too. Think Oliver Sacks' A Leg to Stand On, or Claudia Osborn's Over My Head, or Jill Bolte Taylor's recent A Stroke of Insight (she's a brain scientist, not a physician, but the idea is similar).

An early member of the club is Percivall Pott, an English surgeon. At age 42, he fell off a horse and sustained a serious broken leg. The standard of care for his kind of injury in the 1750s was amputation--which wasn't much care at all, because the surgery itself was quite likely to bring death by sepsis. Instead, his friend and mentor Edward Nourse ordered his wound cleaned, reduced, dressed, and splinted. Pott wrote during his convalescence. Upon recovery, he wrote up the successful treatment in Some Few Remarks Upon Fractures and Dislocations (1768). The book became a popular reference for surgeons in much of western Europe. "It is possible that but for his accident Pott would not have turned to authorship, and surgical literature would have been the poorer," commented Brown and Thornton (see below). Because bonesetting in Pott's day was considered something requiring only minimal skill, he cautions readers from the outset to beware bonesetting quacks, in terms not too far off from today's advice:

The desire of health and ease, like that of money, seems to put all understandings and all men upon a level; the avaritious are duped by every bubble, the lame and the unhealthy by every quack. Each party resigns his understanding, swallows greedily, and for a time believes implicitly the most groundless, ill-founded, and delusory promises, and nothing but loss and disappointment ever produces conviction. (Pott, 2)

Pott is also credited with being the first scientist to link cancer to environmental causes, when he found an association between exposure to soot and a specific cancer of the groin common to chimney sweeps. (The first signs of the cancer were called "soot-wart" by sweeps.) One of the earliest occupational safety laws in the UK was written in part as a response to Pott's discovery. Pott also wrote on spinal arthritis, head injuries, and hernias.

See also:
John R. Brown and John L. Thornton, "Percival Pott and the Chimney Sweepers' Cancer of the Scrotum," British Journal of Industrial Medicine 14(1)(January 1957): 68-70. Online here.

The Geo-Politics of Disability Speaker Series, 2009 Edition

The Institute on Disabilities at Temple University, has released the lineup of invited guest speakers for rest of the 2008 - 2009 academic year. And quite an intoxicating brew it appears to be.

January 28 - Nicole Markotić (photo on right), Associate Professor of English, University of Windsor, Ontario, Canada.
February 18 - Michael Bérubé, Paterno Family Professor in Literature, The Pennsylvania State University
March 18 - James Charlton, Access Living, Chicago, IL
April 15 - Adrienne Asch of Yeshiva University, New York City, NY

All talks take place at 1810 Liacouras Walk on Temple University's main campus, beginning at 12:00 noon. Requests for accommodations should be directed to Brian Zimmerman at the Institute on Disabilities.

We hope to post a DS,TU review of Dr. Markotić's new book Scrapbook of My Years as a Zealot (Arsenal Pulp Press: Vancouver, Canada) in advance of her visit, and distribute a video of the presentation by podcast, so stay tuned. If you live in the region, why not take the train into the city and join us?

July 18: Hermann of Reichenau (1013-1054)

[Image description: A painting showing a brown robbed monk, Hermann, holding a crutch in one hand and a book in the other, with a harp nearby, and the words "Salve Regina," the name of his best known composition; found here]

Maybe some of the fine medievalists blogging about disability history can help with this one: I saw reference to Hermann von Reichenau's birthday today (the Catholic Encyclopedia gives the date as 18 February instead; still, five years till his 1000th!). The son of a nobleman, he didn't walk, and was hard to understand when he spoke, so the assumption is usually that he had CP or something similar. He was called "Hermann der Lahme," or "Hermannus Contractus" or Hermann the Lame, Hermann the Twisted. At age 7 Hermann entered the monastery at Reichenau. There, he became an expert on Arabic mathematics and astronomy, composed hymns and poetry, and wrote historical chronicles and treatises on music theory and math games. He seems to have introduced the astrolabe to central Europe, among his other accomplishments.

The relics on display here seem to include part of Hermann's skull? Am I seeing that right?

While I'm on the subject of cloisters, I recently read Mark Salzman's Lying Awake (Vintage 2001), a short novel about a cloistered nun in 1990s California who's diagnosed with temporal lobe epilepsy. But Sister John, a published poet, experiences her seizures as ecstatic spiritual revelations, and isn't sure she wants to lose that by having the recommended neurosurgery. The story follows her decision-making, the conversations she has with doctors and priests and her sisters in the community. It's thought-provoking, because the life of a woman religious involves vows and habits of selflessness that affect her criteria for deciding about medical treatment. (If the author's name rings a bell, Mark Salzman is married to filmmaker Jessica Yu, who won the Academy Award for her 1996 short-subject documentary Breathing Lessons--about Berkeley poet Mark O'Brien, who used an iron lung.)

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.

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.

BADD 2008: Celia's Retreat

This is my 2008 entry for Blogging Against Disablism Day 2o08. In 2006, I wrote about disablism in the suffrage movement, and the invisibility of disabled women in a popular US women's history text; in 2007, I wrote about disablism in North American immigration history, and the death of young George Everitt Green. This year, I'll continue in the nineteenth-century US historical context, but this time at a more intimate scale. I started doing disability history by studying 19c. American families' experiences around developmental disability--this is essay springs from that work.--PLR

Karly is a different being here. Living out of doors in the air which is the health of life to him, he grows sturdy & quiet & all his flying nerves are soothed into a delightful state of calm....he rows in his boat all the day long & is happier than a king.... he fishes & he drives in the flock of cows for milking & he digs his 'riverlets' as he calls them, in the wet sand in the upper cove, & he sails boats & leads a life of bliss generally & is petted & praised by all his kin until his eyes are wide with amazement, that being a kind of thing he isn't at all used to, you know.

--Celia Thaxter to Mary Lawson, in an 1860 letter from Appledore Island

Celia Laighton Thaxter (1835-1894) was an American poet from the New England context; she was close friends with John Greenleaf Whittier, Sarah Orne Jewett, and Annie Fields, among others. She grew up in the Isles of Shoals, a small cluster of islands about ten miles off the coast at Portsmouth, New Hampshire. Her parents ran an inn on Appledore Island. She married her tutor, Levi Thaxter, when she was sixteen, and their son Karl was born the following year, 1852, on Appledore Island. The birth was complicated, and Karl's later physical and mental impairments were always traced to that circumstance.

[Image description: A black and white portrait of a young mother holding one little boy, while a slightly older boy is sitting nearby--caption reads: "Celia Thaxter with John and Karl, circa 1856. UNH"]

And soon two more sons were born, and the Thaxters were living on the mainland, and Celia was overwhelmed by a frustrating marriage and three little boys and the uncrossable distance to her mother and her favorite places. She started writing poetry, with her first published title, "Land-locked," revealing her distress. To a friend, she confided, "Oh, for your patience! How mine takes wings and leaves me forlorn and ugly and horrid!" (to Elizabeth Curzon Hoxie, 28 March 1857). Her letters from these years are full of loving stories of Karl's little boy antics, but as he grows older, the stories grow less charming, more troubled: "Karl and John do nothing but fight; they live on it all of the time; it's their bread and meat and drink." (also to EC Hoxie, 10 July 1861)

By 1869, Celia was visiting Appledore for long stretches, with Karl in tow, leaving Levi and the younger boys back. The summers in the Islands were meant to help Celia's aging mother; but they also kept Karl away from increasing rumblings, from acquaintances and even from Levi, that the boy should be institutionalized. On Appledore, he was safe from such pressures; and he was well away from the scrutiny of busybody neighbors, looking for a reason to criticize the youth. On the Island, he was happy and useful--there were frequent shipwrecks to clean up, with survivors needing assistance; there were elaborate gardens to be tended, and help around the house that he could do. He was still prone to odd behavior--"his poor head won't work quickly enough, you see," Celia wrote to an old friend--but on an island, Celia could mostly control the consequences.

In time, Celia sought more skills an adult Karl could develop, with an eye to his self-sufficiency. She arranged for him to learn photography, printing, and carpentry too, but none became a marketable skill, which was a constant concern for Celia. "I do not mind the thought of death, it means only fuller life, but there is a pang in the thought of leaving Karl," she wrote to Whittier in 1889. In the year of her death, she was still an enthusiastic gardener, with Karl by her side: "I work all day long, mostly out of doors, and there are so many pleasant things to do. Not easy, there is a great deal of hard work, but I love it all; and Karl is so good and helps me with the heavies, and we have such a good time together," reads a letter from April 1894.

That truly sounds lovely. However, there's a big downside to such cozy protected idylls: While she was alive, Celia Thaxter kept her son Karl safe, and well, and active. But Karl outlived Celia, and his last years without her were very difficult (he died in 1912, and is buried with his brothers and father at Kittery Point, Maine). His father was already dead, and his brothers didn't know him very well, or understand his needs. And neither did anyone else.

Celia Thaxter did what she thought was best for Karl, and she did it pretty well. But the lesson I read in the anguish of her later letters is that the protective carer/cocoon model isn't, in the end, a great response to the problem of disablism, because nobody lives forever, and no cocoon is permanent. Instead of trying to insulating ourselves completely away from the disablism of the world, appealing as that seems in the short term, and necessary as it may be at times, we'd surely do better to confront the disablism whenever possible, learn how it works, make alliances and work for change in our communities... or we'll always live in fear of the future.

See also:

Jane E. Vallier, Poet on Demand: The Life, Letters, and Works of Celia Thaxter (Down East Books 1982).

Julia Older, ed. Selected Writings (Appledore Books 1997).

Letters of Celia Thaxter, edited by her friends A. F. and R. L. (Houghton Mifflin 1895).

Norma H. Mandel, Beyond the Garden Gate: The Life of Celia Laighton Thaxter (University Press of New England 2004).

Perry D. Westbrook, "Celia Thaxter's Controversy with Nature," New England Quarterly 20(4)(December 1947): 492-515.

FINAL NOTE: I haven't published anything about Celia and Karl Thaxter, but I discussed them and other families in a conference paper a few years ago, and if you want a pdf of it, email me, I'll be glad to send it along. Here's the cite:

Penny L. Richards, "The Pure, the Delicate, and the Disturbed: Reading Developmental Disability in 19th Century Family Sources," paper presented at the January 2005 meeting of the American Historical Association, Seattle WA.

February 26: Lesya Ukrainka (1871-1913)

[Image description: an oval framed, black-and-white portrait of a young woman in an embroidered blouse and jacket]

Who told you that I'm weak,
That I succumb to fate?
My voice is strong when I speak,
My thoughts and songs vibrate.

Ukrainian poet Lesya Ukrainka was born Larysa Kosach on this date (more or less--depends on which calendar you follow) in 1871. From age 10, she had chronic joint and bone pain caused by tuberculous arthritis. In search of relief, she traveled a lot to warmer places, seaside towns on the Crimea, in Italy, in Egypt, and elsewhere. Her parents taught their children Ukrainian language and culture, when such things were banned in the Russian-run schools. As a result, she took the pen name "Ukrainka" (Ukrainian woman), and published poetry, drama, essays, and literary criticism, all informed by her study of Ukrainian folktales, history, and culture. Her controversial works had to be published in another part of Ukraine, outside Russian jurisdiction. (She also published translations, including a 1902 translation of the Communist Manifesto, which got her arrested.) The ferocity of her cultural nationalism was often contrasted with her physical "frailty," a false contrast that provoked her to write the lines above.

Today, there are monuments to Ukrainka throughout Kiev--and a boulevard named for her. There's also a monument to her at the University of Saskatchewan, and another in downtown Cleveland. Her image has been featured on Ukrainian postage, coins, and banknotes.

February 19: Amy Tan (b. 1952)

[Image description: Amy Tan, wearing a purple and black blouse and a chunky pendant]

I have neuropathy, which makes it difficult to walk. At one point I thought I would be in a wheelchair. That's the reason for the funny shoes; they are orthopedic shoes, and they do enable me to walk – and I'm determined now to walk many miles in Bhutan. I have set my goals differently these days; I can struggle through pain and limitations if I find the right motivation. I also have seizures. I can't drive. I have to be careful if I do certain things and I'm by myself, but I'm not going to let that limit me in certain ways. I just have to adapt my life in other ways. One of my adaptations has been to have a constant companion, my dog. And I have trained my dog to do certain things to help me, to not walk into streets when I'm not paying attention, or to get help from my husband or to let me know that what I see in front of me is in fact not real. (Quote from a 2004 interview, found here.)

Popular novelist Amy Tan was born on this date in 1952, in Oakland, California. Readers who enjoy her fiction may not be aware that Tan has experienced significant neurological impairment from undiagnosed Lyme disease in 1999, as described in the quote above. She has a page at her website detailing her medical odyssey toward a diagnosis and appropriate treatment, and the everyday lasting effects of late-stage neuroborreliosis. It's also one theme in Tan's 2003 book of essays, The Opposite of Fate.

January 3: Anne Stevenson (b. 1933)

Anne Stevenson, poet
an older white woman wearing glasses and short brown hair

I've lost a sense. Why should I care?
Searching myself, I find a spare.
I keep that sixth sense in repair
And set it deftly, like a snare.

--Anne Stevenson, "On Going Deaf"

American-raised English poet Anne Stevenson turns 74 today. She was studying music in college, a cellist, when she started becoming deaf, and turned to literature. (Stevenson now uses a cochlear implant.) She's published eighteen volumes of poetry, a biography of Sylvia Plath, and two studies of Elizabeth Bishop's work. Some of Stevenson's poems, "What I Miss" and "Hearing with my Fingers" among them, are about music and deafness; she dispels the common misconception that deaf people only experience silence.  "Silence I miss," she declares. 

Visit Anne Stevenson's website for more information.

See also: 
Angela Leighton, ed. Voyages over Voices:  Critical Essays on Anne Stevenson (Liverpool University Press 2010).

[Image, text, and links updated 3 January 2014]

Bits from the Bookshelf

I've been getting books in the mail (yeah!), picking up stuff from library "new books" shelf, borrowing from friends... some snippets from the recent reads:

Lucia Perillo, I've Heard the Vultures Singing (Trinity University Press 2007), a collection of personal essays by a poet; the last paragraph in the chapter "Definition of Terms":

Sometimes I'll be rolling along the streets and a shout will ring from the dampness and the dark--Cripple! This will unhinge me not because the word is offensive but because I realize how visible I am, how I have lost, forever and utterly, the ability to blend in. All my life, isn't this what I aspired toward--being a distinctive someone? And haven't I, like the protagonist of the fairy tale, finally gotten what was once my fervent wish?

Here's a review of Perillo's book by blogger and poet Ron Slate.

Lori Lansens, The Girls (Little Brown 2005), a novel about conjoined twins, told in their alternating voices:

The strangest thing about strange things is that they're only strange when you hear about them or imagine them or think about them later, but never when you're living with them. (I believe I can speak about that with some authority.) (p 206)

Dave Hingsburger mentioned liking The Girls on Chewing the Fat recently; and Redondowriter also mentioned reading it. There's also an unabridged audio version on CD.

Elizabeth McCracken, The Giant's House (Dial Press 1996), a novel about "the tallest boy in the world" (based somewhat on the life of Robert Wadlow), narrated by the young man's friend, a librarian:

It isn't that I ever forgot that James was tall. No way to forget, not when everything in the average-sized world conspired to remind both him and others. But I could forget that it was something people would not be prepared for, that the sight of a body like his would cause them to think: but that's not possible. It can't be true. (p 200)

Iain Hutchison, A History of Disability in Nineteenth-Century Scotland (Edwin Mellen Press 2007), a friend's historical study (exactly what the title indicates); from the introduction:

The well-intentioned roles of philanthropists, educators, medical professionals, administrators, clergy, and 'the rest' have been widely documented. But the focus of their attention and possible intervention, people with disabilities, had little voice with which to express how they felt about their lives, their circumstances, their frustrations and their aspirations. Yet people with impairments should be placed centre-stage, and not on the periphery of external intervention, in considering any history of disability. This is what this study endeavours to do. (p vi)

There are more, but as usual I forget to mark interesting passages and afterwards can't quite find them... Diane Setterfield's novel The Thirteenth Tale (Washington Square Press 2007) features a whole family of characters that might be considered mad, or at least very odd, in all the usual ways of a gothic tale that references Jane Eyre, often; Michelle de Kretser's The Hamilton Case (Little Brown 2003) is about the last days of colonial rule and the first years of independence in Sri Lanka; one main character, Maud, is an older woman shut away in a disintegrating home, herself in the process of mental and physical "declines" (which she experiences, against the usual construction, as awakenings, to color, to the natural world, to her own needs and comforts). Nearly all the characters in de Kretser's book are unpleasant, but Maud at least becomes more interesting as she progresses into old age.

It's the Blue Badge of Christmas, Tiny Tim!

A couple edgier vintage links for the heart of December: What's the Blue Badge of Christmas? Gimpy Mumpy explained this "very special" aspect of the holiday season in 2006. If you're sitting through one too many cloying depiction of Tiny Tim this season, William G. Stothers wrote the perfect perennial essay, "I Hate Tiny Tim." My favorite line: "When you think about a person with a disability as someone to feel sorry for, as someone to be taken care of and looked after, it is difficult to think about hiring them as a teacher, an architect or an accountant."

ADDED LATER: One more: Andrea's excellent disability analysis of "Rudolph the Red-Nosed Reindeer"....Eventually everyone decides to tolerate the mutant reindeer... but only because he can be useful to them...

September 21: HG Wells (1866-1946)

Born on this date, English writer H. G. Wells. Wells had chronic lung and kidney troubles following a sports injury in his early twenties; he was also a co-founder of the British Diabetic Association (since renamed Diabetes UK) in 1934. His novels, particularly The Island of Doctor Moreau and The Time Machine and The Invisible Man, have fairly obvious references to eugenics and evolution, normality, science, the senses, the mind, and non-standard bodies. But his short fiction is also full of these themes. So go read his classic short story, "The Country of the Blind" (1904). Or "The Remarkable Case of Davidson's Eyes" (1895) or "Under the Knife" (1896) or .... well, three's plenty for starters.

September 3: Sarah Orne Jewett (1849-1909)

American writer Sarah Orne Jewett was born on this date in 1849, in South Berwick, Maine. She had rheumatoid arthritis from childhood, which must have been especially difficult living in northern New England long before central heating. Brrrr.

But her family (including her father and grandfather, both doctors) encouraged an active and independent childhood when possible:

...the Jewetts took a philosophical view of Sarah's illness, neither denying nor belittling it nor allowing to tyrannize over her life. They were sympathetic, but there was always the expectation that as soon as the pain subsided there were duties and diversions waiting, most of them outdoors. Her father believed that exercise was as important as rest in keeping the disease at bay, and she became amazingly active and sturdy, considering her handicap. A strong cross-country walker, she liked best to strike out across the fields, taking a book along, hunting out rare flowers and herbs and visiting favorite trees as if they were old friends. She was an expert horsewoman and rower, and she enjoyed skating, swimming, and coasting.

(from Paula Blanchard, Sarah Orne Jewett: Her World and Her Work [DaCapo Press 2002]: p. 31)

August 28: Janet Frame (1924-2004)

'For your own good' is a persuasive argument
that will eventually make a man agree
to his own destruction.

--Janet Frame

New Zealand poet, novelist, and memoirist Janet Frame was born 28 August 1924, in Dunedin. She spent much of her twenties in mental hospitals, beginning with a voluntary commitment in 1947, ending with her final release in 1954. (A diagnosis of schizophrenia was made, but was later rejected by a panel of psychiatrists in London.) She underwent hundreds of electric shock treatments --"each the equivalent, in degree of fear, to an execution," she said -- during her hospitalizations. Her mother had signed the paperwork for a lobotomy, but the surgery was canceled after Frame's 1951 book, The Lagoon and Other Stories, won a national award. She wrote a novel based on her family and her hospitalizations, Owls Do Cry, published in 1957. Another novel by Frame, Faces in the Water (1961), features a heroine who is institutionalized and almost lobotomized. Her novel Scented Gardens for the Blind (1980) has as its main character a girl who never speaks.

Some cites on Frame and disability, to mark her birthday (plenty more cites here):

Simone Oettli-van Delden, Surfaces of Strangeness: Janet Frame and the Rhetoric of Madness (Victoria University Press 2003).

Ana Maria Sanchez Mosquera, "Un/writing the Body: Janet Frame's An Angel at my Table," Commonwealth Novel in English 9-10(Spring-Fall 2000-2001): 218-241.

C. MacLellan, "Conformity and Deviance in the Fiction of Janet Frame," Journal of New Zealand Literature 6(1988): 190-201.

Susan Schwartz, "Dancing in the Asylum: The Uncanny Truth of the Madwoman in Janet Frame's Autobiographical Fiction," Ariel 27(4)(October 1996): 113-127.

Tanya Blowers, "Madness, Philosophy, and Literature: A Reading of Janet Frame's Faces in the Water," Journal of New Zealand Literature 14(1996): 74-89.

Venla Oikkonen, "Mad Embodiments: Female Corporeality and Insanity in Janet Frame's Faces in the Water and Sylvia Plath's The Bell Jar," Helsinki English Studies 3(2004): online here.

Ten Disabled Characters

For the next edition of the Disability Blog Carnival, host David has requested "top ten lists." I haven't slept for a few days (postoperative ornery kid), so forget careful selecting and ranking, and research is also, sadly, on hold. But I've got my bookshelves... so here are ten disabled characters in recentish novels on my fiction shelves (mostly). In no particular order:

1. Julia McNicholl Hansen in Vikram Seth's An Equal Music (Vintage International 1999) is a chamber musician, a pianist, with adult-onset, progressive hearing loss. By the time we meet her, she's taken lipreading classes and adjusted her performance habits to accommodate the difference; but she hasn't yet told any of her colleagues, afraid for what their reaction will be. So far, she's been able to rely on her experience of the non-audible ways musical quartets interact. The novel's narrator, her old lover and colleague Michael, is thunderstruck when he learns of Julia's impairment. He says "I would have expected more protest, more despair, more rage," and protests "You're taking it too lightly." To which Julia replies, "Well, Michael, it's for me to take. You would have managed somehow if this had happened to you. You might not think so, but you would have." (168-169)

2. Dick Musch in Molly Gloss's Wild Life (First Mariner Books 2001) is a very minor character--he has just one scene--but the history he reflects is important, and under-researched. The narrator, Charlotte, encounters Dick, "a boy with a wooden leg," living in a logging camp in the Pacific Northwest, around 1900:

I leant back and rested my elbows on the bench beside him and commented upon his wooden leg in a mild and roundabout way. 'I believe I've seen half a dozen crippled men in coming four blocks through town,' I said, which didn't seem to offend or surprise him.

'Donkey boilers blow up,' he said easily. 'People fall from flumes, band saws break, a tree walks, a leg gets caught in the bight of the donkey cable. I guess there is about a hundred ways to get killed or hurt in the woods and the mills.' (p. 85)

3. Francis-Xavier Martin in John Bailey's The Lost German Slave Girl (Grove Press 2003) was a real person--because this isn't a novel, but a narrative history of an unusual legal case in antebellum Louisiana. Martin (1762-1846) was an eminent jurist and historian. He presided over the Louisiana Supreme Court for many years, at least a decade of them after becoming blind in his seventies. "Most men would have seen this as a reason for retiring, but not so Martin. When he was no longer capable of writing opinions, he dictated them to an amanuensis; or when none was available, he placed guides at the edge of each page so that he would know when to move his hand down to commence writing a fresh line." (p. 200) If a novelist created a blind judge to hear an appeal about whether or not a slave woman was really white, that would seem too perfect... but sometimes history works like that.

4. Alice Beazley in Jennifer Vanderbes's Easter Island (Bantam Dell 2003) is the sister of Elsa, a main character in this historical novel, but her developmental disability is central to the plot, so she's no side character--we learn much of her interests, and skills, and feelings. Elsa apologizes for Alice a lot, and worries that Alice is a burden on a 1910s research expedition to Easter Island; Elsa's husband insists that Alice is no burden, for reasons of his own. In an early scene, Elsa remembers being scolded by her unusually enlightened father decades earlier, when there was talk of sending the young Alice to an asylum:

'Understand this,' he said. 'Alice does not need to be fixed. She needs to be cared for. And you will not now or ever refer to any of Alice's behavior as a problem or defect. Do I need to repeat myself?' (p. 40)

5. Auro in Nicholas Christopher's A Trip to the Stars (Simon & Schuster 2000) is first introduced as a nervous boy with echolalia--he cannot easily initiate his own words and sentences, but can speak back the words that others say. This echoing makes conversations frustrating, but in music his ability to repeat what he hears is useful, so he sticks to the drums, and becomes a successful jazz drummer by book's end. (By young adulthood, Auro has also begun carrying a notepad for smoother communication.) Auro's cousin describes him, "though his speech disability made it sound as if he had a constricted thought process, that was anything but the case." (p. 143)

6. Zaren Eboli, also in Nicholas Christopher's A Trip to the Stars (Simon & Schuster 2000), is Auro's mentor and bandmate, a jazz pianist with eight fingers (no pinkies), who's also an expert on spiders (eight fingers, eight legs, see?). A particular kind of spider bite that creates longterm neurological effects (hypersensitive hearing and heightened memory, for example) is part of the novel's complicated plot. There's also a Vegas billiards champion in the book, who has a hydraulic billiards table that adjusts to his wheelchair's height. So this book is full of disability themes.

7. Frederick Law Olmsted in Erik Larson's The Devil in the White City (Vintage 2003) is also a real person, and this is another narrative history rather than a novel. Larson tells of renowned landscape architect Olmsted's involvement with the 1893 Chicago Columbian Exposition, but also of his dementia, which became apparent soon after the fair: "It has today, for the first time, become evident to me that my memory for recent occurrences is no longer to be trusted," he wrote to his son in May 1895. He said "anything but that" to the idea of being institutionalized, but in the end he was, anyway--at the McLean Asylum in Massachusetts, the grounds of which Olmsted himself had designed. (p. 379)

8. Crake (Glenn) in Margaret Atwood's Oryx and Crake (Doubleday 2003) is the villain of the piece--he wipes out the whole human race, more or less, with a virus he's personally engineered and distributed. He's also a character who identifies as having Asperger's--in fact one of the chapters is titled "Asperger's U.," and concerns the main character's visit to Crake at school, which Atwood describes using the usual stereotypes:

Watson-Crick was known to the students there as Asperger's U. because of the high percentage of brilliant weirdos that strolled and hopped and lurched through its corridors. Demi-autistic, genetically speaking; single-track tunnel-vision minds, a marked degree of social ineptitude--these were not your sharp dressers--and luckily for everyone there, a high tolerance for mildly deviant public behaviour. (193-194)

Hmm, David, why top TEN, anyway? Okay, okay, more:

9. Grace Dietrich in "Two Rivers," a novella in Andrea Barrett's Servants of the Map (WW Norton & Co., 2002) first appears in the story as a deaf child living near the Ohio River in the 1820s, who uses her own gestural language or home sign, familiar to her family. "Grace lost her hearing when she was two," her sister Miriam explains to a visitor, "Most of our signs she invented, though we also use some she's picked up from her friends." (p. 148) With her sister and brother-in-law, Grace helps start an Academy for the Deaf in Ohio; the Dietrich sisters are also part of the brother-in-law's expeditions for fossils, with Grace drawing the detailed maps of their excavation sites.

10. Henry Day in Keith Donohue's The Stolen Child (Anchor Books 2006) is a hobgoblin who has taken over the life of a human boy in mid-20th-century America. Okay, being a hobgoblin is not exactly a disability under the ADA, but the "changeling myth" is an enduring story in disability studies (but see Goodey and Stainton 2001* on whether or not this story has firm historical basis). As a hobgoblin, Henry can imitate human form, but it's a constant effort; and likewise, he has to fake the memories and personality of the boy he's replaced. So there are commonalities with the experience of hidden disability and passing in Henry's story.

(*CF Goodey and Tim Stainton, "Intellectual Disability and the Myth of the Changeling Myth," Journal of the History of the Behavioral Sciences 37(3)(July 2001): 233-240.)

Two final notes: (1) Inclusion in this list does not constitute an endorsement of the book or the characterization in question--in fact some of them are pretty problematic--but I figure it's still worth knowing they're out there; and (2) The reason these are mostly from 1999-2003 is that I buy a lot of my books secondhand.

August 11: Andre Dubus (1936-1999)

American writer Andre Dubus was born on this date in 1936, in Lake Charles, Louisiana. He was almost fifty years old, an ex-Marine, father of six, a prolific short-story writer and a respected writing instructor when he stopped to help an injured woman and her brother on the road. The three were hit by an oncoming car, killing the brother. Dubus saved the woman by pushing her to safety, but his own legs were crushed by the car instead. One amputation and years of surgery and therapy followed, and for the rest of his life Dubus used a wheelchair.

In his post-accident life, Dubus published two further books of essays, a collection of short stories, and numerous contributions to literary magazines. One of the essay collections, his last, was Meditations from a Moveable Chair (1998, cover at right shows a bearded Dubus in a wheelchair, near a ramp in a swamplike exterior). A comment here earlier this week pointed out that the title story of Dubus's second-to-last collection, Dancing After Hours (1996), features Drew, a wheelchair user and his assistant, and a waitress who has a strong memory about listening to Rahsaan Roland Kirk. (Ruth at Wheelie Catholic made note of Dubus last year, too.)

[Note: Last August 11, we marked the birthday of poet Louise Bogan.]