DHA Outstanding Book Award

From the DHA:

The Disability History Association promotes the relevance of disability to
broader historical enquiry and facilitates research, conference travel, and
publication for scholars engaged in any field of disability history.

The Disability History Association is excited to announce its 5th Annual
Outstanding Publication Award. The award alternates between books and
peer-reviewed articles or book chapters.

In 2016 the award committee will accept book submissions. Submissions are
welcome from scholars in all fields who engage in work relating to the
history of disability. Book submissions may have one or multiple authors
and may be a single monograph, or an edited collection, provided the latter
contains new and original scholarship.

Although the award is open to all authors covering all geographic areas and
time periods, the publication must be in English, and must have a
publication date within the two years preceding the submission date (i.e.
1/1/2014 – 5/1/2016). If your book was published in 2014 or 2015, or it
will be published in the first four months of 2016, your book is eligible
for the prize.

The amount of the award is $600.

All submissions should be sent to the award committee care of Michael
Rembis no later than May 1, 2016.

Authors should arrange for five (5) copies of the book to be sent directly
to the award committee at: Michael Rembis, Department of History,
University at Buffalo, 552 Park Hall, Buffalo, NY 14260-4130. Submissions
should also be sent in a format compatible with screen reading software,
such as a .doc file or a text-based .pdf to marembis@buffalo.edu.

In the interest of modeling best practices in the field of disability
studies, we require that the publisher/author provide an electronic copy in
text-based .pdf or .doc file format for the review committee. We understand
that copyright rules apply, and we will only use the electronic copy for
the purposes of the DHA Outstanding Publication Award.  Manuscripts not
provided in accessible electronic formats for screen reading software in a
timely manner will not be considered for the prize.

The Disability History Association board will announce the recipient of the
DHA Outstanding Publication Award in September 2016.

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)

Big Day for Disability History

Two big projects in US disability history are launching into the world today:

Today's the release date of Kim Nielsen's A Disability History of the United States (Beacon Press 2012), a concise (272 pages!), inexpensive (just $16 in hardcover!), and sweeping account, starting before 1492, and landing in the present-day.  If this is exactly the book you've needed for a class, for a book group, for your own study, you're not alone.   I've only been reading in disability history for seventeen years, but back in the 1990s, you'd be lucky to find a text that even acknowledged the existence of disability before Samuel Gridley Howe's 1848 report to the Massachusetts legislature.  (All my graduate projects had colonial and Early Republic settings, so I noticed.)  So for that aspect alone, let alone all the other goodness involved, I'm thrilled to greet this book.

Also--DVR alert--start popping the popcorn and dimming the lights!  Tonight is the first night of Turner Classic Movies' month-long feature, "The Projected Image:  A History of Disability in Film."   More than twenty films, various eras and genres, all with disability themes, airing all five Tuesdays in October.  Lawrence Carter-Long will co-host the series with Ben Mankiewicz.  Tonight's lineup:  An Affair to Remember (1957);  Patch of Blue (1965); Butterflies are Free (1972), Gaby-A True Story (1987), and The Sign of the Ram (1948).  All with closed captions, all with audio description.  It's a big deal that a cable network is devoting this much time to disability history and culture, and to make it accessible too; if you don't get TCM, consider calling your cable company and just subscribing for October.  That'll be great for you (20+ movies on disability themes, plus the rest of their lineup), and it'll send a signal that this kind of programming is appreciated. 

Also, if anyone wants to see a discussion feature here on DSTU, for either Kim Nielsen's book, or the TCM Film Series, I'm game.  Just holler in comments, and I'll be glad to set that up.  Otherwise, the hashtag for twitter discussions of the film series is #ProjectedImageTCM, and TCM has its own discussion boards that are certainly available for the purpose.

ETA:  Here's a podcast interview with Kim Nielsen about the new book.  

Giuseppe Pontiggia, "Born Twice"

I recently picked up the English translation of the Italian novel Nati due volte by the late Giuseppe Pontiggia, because it seemed like my kind of subject--the narrator is a father whose second son has cerebral palsy. It's not so much a novel as a series of vignettes, thirty-eight scenes across the son's first three decades, in the father's marriage and work lives. I have no way to judge whether the translation is a good one, but some of the observations are very sharp, unsentimental, like this description of another parent, a mother in a parent support group:

Her son's case is not serious; he has trouble walking, and physiotherapy alone will probably take care of it. She tends to observe us with careful and detached curiosity, like a first-class traveler visiting the third-class deck. She never neglects to mention the minor nature of her son's condition. When we're discussing the most difficult cases she opens her eyes wide in a kind of theatrical solidarity, but you can tell that hearing other people's stories simply offers her yet another form of reassurance. (p. 69 in my copy, at the beginning of the chapter titled "Pleasure Island")

Yep. Met her, or at least met her American sisters (and brothers). Other standout chapters for me were focused on the son's school principal, a visit with a dementia specialist, and a lot of the conversations with the son (Paolo) as a teen and young man. The title phrase, Born Twice, refers to a counselor's advice that "These children are born twice. They have to learn to get by in a world that their first birth made difficult for them. Their second birth depends on you, on what you can give them...." I remember being aware of that, when my son was first born. I had been a teacher, I knew full well that birth didn't have the last word on anyone's outcomes in life.

June 15: Ana Castillo (b. 1953)

[Visual description: book cover for "Peel My Love Like an Onion" by Ana Castillo; a woman's face in flamenco-dancing costume is partly hidden by a fan]

"A friend suggested that I see a doctor, as if a doctor could give me a new leg, another spine, make me fifteen years younger. The doctor sent me to a therapist who then advised me to take a ceramics course at City College to channel all that creative fire burning inside me."

--Carmen Santos, the narrating character in Ana Castillo's Peel My Love Like an Onion (1999)

American novelist Ana Castillo was born on this date in 1953, in Chicago. Her character Carmen "la Coja" Santos or "the cripple" (Carmen la Coja is the Spanish title of the novel) is also born in Chicago in the 1950s, and survives a childhood bout with polio to become a "gimp flamenco dancer." In her forties, a series of setbacks including post-polio symptoms sets the character on a mid-life project of resetting priorities. More here about the "trope of disability" in Castillo's novel and others.

See also:
Suzanne Bost, Encarnación: Illness and Body Politics in Chicana Feminist Literature (Fordham University Press 2009).

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?)

The Encyclopedia of American Disability History

[Image description: Three volumes of the Encyclopedia of American Disability History, overlapping each other, on a table]

Just realized I hadn't posted about this here yet--the Encyclopedia of American Disability History (Facts-on-File 2009) is now out, for real, in print. And it's heavy, too. If you're a longtime reader here, you may notice that several entries seem eerily familiar; that's because they started as blog posts right here at DS,TU. I wrote about 25 entries in the encyclopedia, and compiled the "common quotes" feature, and a lot of recent dates for the timeline (again, by looking through the DS,TU archives!).

Sue Schweik, The Ugly Laws: Disability in Public

Sue Schweik's long-awaited book, The Ugly Laws: Disability in Public is now available as part of the History of Disability series from NYU Press. For much of the twentieth century, there were local laws in many American cities that allowed police to remove unsightly individuals from public view. The Chicago wording is most famous: "Any person who is diseased, maimed, mutilated, or in any way deformed... shall not... expose himself to public view."

Yes, really.

Sue's touring with this book--so if the description piques your interest and you can attend one of these appearances, go check them out.

San Francisco: Tuesday July 14 (With "Tiny" Garcia of Poor Magazine,
Leroy Moore, Coalition on Homelessness and the Po' Poets): Modern Times
Bookstore, 888 Valencia St, 7 pm. Focus on connections to continuing
criminalization of poverty today.

Cleveland: Sunday July 26: Barnes and Noble Eton Collection, 28801 Chagrin
Blvd, Woodmere, 2 pm. Focus on Cleveland and Ohio disability history.

Chicago: Tuesday July 28: Access Living, 115 W. Chicago, 6-8:30 pm. RSVP
to Riva, 312-640-1919, rlehrer@accessliving.org. Focus on poor disabled
peoples' resistance to the laws.

Chicago: Wednesday July 29: Women and Children First bookstore, 5233 North
Clark Street, 7:30 pm. Focus on connections betwen the policing of
disability and the policing of gender in the laws.

News of the Day: Amazonfail and BADD 2009

Does the "Amazonfail" story affect disability studies books too? Oh yes it does!

Will there be a Blogging Against Disablism Day 2009? Oh yes there will!

Simi Linton on disability and architecture

More on the subject; one of my local reading groups is discussing Simi Linton's My Body Politic next month, so I happened to run across this passage just after writing yesterday's post. Linton is describing the steps at Columbia University:

My earlier body had been trained to walk such steps and my eyes to appreciate their grandeur. I grew up thinking, although I'm sure I never said it out loud, that steps are either a pragmatic solution, a means to connect spaces of different heights, or they are an aesthetic element, added onto a design because it makes the building more beautiful. But now, with their function lost to me, their beauty began to fade, and I saw something I hadn't noted before--attitude. Steps, and particularly these steps at Columbia, seemed arrogant. The big buildings sitting up on top said, "The worthy can climb up to me, I will not kneel down and open my doors to those below me."... The design of steps forbids the wheelchair user, and the designer of these steps, deliberately or unwittingly, provided us only a solitary and difficult route to get where those steps took all others. (p. 57)

A Milestone for Tar Heel Reader

It's not the biggest library in the world, but it's one of the very coolest. Tar Heel Reader is

a collection of free, easy-to-read, and accessible books on a wide range of topics. Each book can be speech enabled and accessed using multiple interfaces (i.e. switches, alternative keyboards, touch screens, and dedicated AAC devices). The books may be downloaded as slide shows in PowerPoint, Impress, or Flash format.

according to the welcome page. The idea is to provide new readers of all ages with appropriate, interesting, accessible content--because new readers who are 12, 17, 23, or 41 don't necessarily want to read about puppies and kitties, right? Students and teachers and parents can also create books for the site, using the wealth of Flickr images or their own uploads. Tar Heel Reader is a collaborative creation of the Center for Literacy and Disability Studies and the Department of Computer Science at UNC-Chapel Hill (thus the name).

Recently, Tar Heel Reader passed 1000 books in its ever-growing archive. About 5% of those, I wrote. I was never able to track back and figure out where I first heard of Tar Heel Reader--on a blog or news feed, no doubt, but which? But I remembered Karen Erickson from my own UNC days (we were doctoral students at the same time in the School of Education), and I knew that she did cool work, so I joined the effort very early on. I wrote several of the first twenty books in June, and I keep adding one or two a week. They're a joy to construct, an excellent challenge, to make interesting books within the limits of the form. My topics have ranged around, from food and clothing and color themes, to books about voting, the first amendment, gargoyles, calligraphy, Shakespeare, the solar system, mirrors, and drag racing. I'm still working on making a story--I've made a few attempts so far, but I'm not a fiction writer and it shows.

If you know a beginning reader who would enjoy accessible picture books on such a range of subjects, send them to Tar Heel Reader. In just their first twenty weeks they've had visits from over 12,000 computers worldwide. It's that cool, and it's getting better every day.

New book: Gail Landsman, "Reconstructing Motherhood"

[Image description: Book cover featuring a Picasso-esque image of a mother and baby, in overlapping squares of color, with blue predominating.]

I've found Gail Landsman's journal articles useful and insightful for years; I've cited them and shared them with students and friends. So I'm pleased to note that Landsman's got a new book out today, Reconstructing Motherhood and Disability in the Age of "Perfect" Babies (Routledge 2008). Landsman is an anthropologist who studies mothers whose babies have diagnoses such as Down syndrome and cerebral palsy, and how they (we!) revise or reinvent their (our!) ideas about parenting and personhood after learning such diagnoses. (Or not, I guess; some don't.) The chapter titles are a good indication of her topics, but don't communicate the abundance of real, honest, human voices in Landsman's work--including her own. I've probably read article versions of some of these, but it's still going on my wishlist.

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 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.

Michael Chabon, "The Amazing Adventures of Kavalier and Clay"

An early passage of Michael Chabon's Pulitzer Prize-winning novel The Amazing Adventures of Kavalier and Clay (2000) caught my attention today:

Thirteen-year-old title character Sammy Clay and his estranged father, a vaudeville performer called "the Mighty Molecule," but born Alter Klayman near Minsk, are talking in a hammam in Brooklyn in the 1930s, reminiscing about Sammy's earlier bout with polio:

"You were so heavy to carry," his father said, "I thought you have to be dead. Only also you were so hot against the hand. The doctor came and we put ice on you and when you woke up you couldn't walk anymore. And then when you come back from the hospital I started taking you and I took you around, I carried you and I dragged you and I made you walk. Until your knees were scraped and bruised, I made you walk. Until you cried. First holding on to me, then on to the crutches, then not with crutches. All by yourself."
"Jeez," Sammy said. "I mean, huh. Mom never told me any of this."
"What a wonder."
"I honestly don't remember."
"God is merciful," the Molecule said drily; he didn't believe in God, as his son well knew. "You hated every minute. You just as good hated me."
"But Mom lied."
"I am shocked."
"She always told me you left when I was just a little baby."
"I did. But I came back. I am there when you come sick. Then I stay and teach you to help you walk."
"And then you left again."
The Molecule appeared to choose to ignore this observation. "That's why I try to walk you around so much now," he said. "To make your legs strong."
This possible second motive for their walks--after his father's inherent restlessness--had occurred to Sammy before. He was flattered, and believed his father, and in the potency of long walks. (106-107)

Book Tour: Cripple Poetics by Petra Kuppers and Neil Marcus

Homofactus Press has us on their blog book tour schedule (and apparently CripChick and Wheelchair Dancer are also stops on the tour). The book they've sent us information about this time is Cripple Poetics by Petra Kuppers and Neil Marcus (photos by Lisa Steichmann), which they describe as "by turns playful, unsettling, raw, and moving...an immersive and sensual correspondence that builds and heats by accretion--one keystroke at a time." Kuppers and Marcus are each, individually, respected performance artists in the field of disability studies. If that sounds like your bag, check it out when it's released this summer--or check out some excerpts here. New to the idea of "crip poetry"? Check out Jim Ferris's "Crip Poetry, or How I Learned to Love the Limp" essay, here.

Petra Kuppers was my roommate at the first Society for Disability Studies conference I ever attended, in 1999, which was also where I first met Mike Dorn. (Petra laughed because I bundle up to sleep, socks and all. You might guess from her work that she's not so much for the bundling.) Whenever you think, wow, it would be so cool if someone could combine this topic and that topic and do something provocative with all the intersections and overlaps and contradictions--well, Petra's one of the people who can do such things, and does them beautifully.

Remembering Herschey Lang (1912-1917)

[Image description: old, damaged photo of a little boy, Herschey Lang, wearing a hat and coat.]

Bella Cohen Spewack (1899?-1990) was a journalist, a publicist, and a writer for stage and screen, best known as the co-writer of the show Kiss Me Kate. But in 1922, while living in Berlin with her new husband, working as a news correspondent, Bella Spewack also wrote a fierce, funny, poignant memoir of her youth, titled Streets. The memoir wasn't published until after her death (it's available from Feminist Press); but because it was written and eventually published, we can remember Bella's little brother Herschey Lang, and have a glimpse of family life in the Lower East Side of the 1910s.

Herschey was born to Fanny and Hoosan Lang, both recent Jewish immigrants from Hungary, when Fanny's daughter Bella Cohen was 13. When he was born, his father brought home to the family's tiny apartment a yellow wood cradle; three cents worth of jelly beans were scattered under his mattress, to ensure a sweet life. Needlework pillowcases and tiny knitted caps were brought as gifts, by neighbors. Then, when he was six months old, Herschey got sick: a rash of sores erupted on his face, arms, and hands. The sores left scars. Hoosan Lang shouted at Fanny, "You wretch! You have brought me trouble! You have borne me a sickly child. And a son, God in heaven, a son!" (pp. 77-79) Hoosan left, while Fanny was pregnant with their second child, Daniel Lang.

Fanny moved herself and her children to a cheaper apartment, using a pushcart to transport their belongings. Bella took care of her little brothers in the streets, while their mother did sewing at home, and tended to their boarders. Herschey learned to walk on the corner of Houston and Goerck Streets, near the Third Street pier. Bella remembered the stares and insults:

Frequently women, and men too, would stop and unashamedly stare at the two in the carriage. Pregnant women looking at Herschey's disfigured face would stick their thumbs in their belts and immediately look away [a superstitious gesture to prevent ugly children].

One woman, whom I had seen frequently on the block, laughed outloud on seeing Hershey. The black salve that I had applied in the morning was still on his face. "Look at the little rat." For a moment, I felt as if the roaring in my ears and the pounding within me would never stop. Then I walked over to the woman and struck out. My outstretched hand landed on her neck.

That woman never again stopped near Herschey's carriage, but when she saw me, with or without him, she would cross to the other side of the street. As her revenge, she tried to spread the rumor that I was crazy, but the street chose not the believe her. (102-103)

When the pier got a little too pungent in the summer heat, Bella took the little ones to a playground, where they could play in sand and take turns on the swings. She also included the boys in her dramatic productions with neighborhood teens: they played a stringed instrument during a scene from Romeo and Juliet, enacted on a tenement fire escape. Fanny and Bella got summer jobs working at a resort in the Catskills, and the boys came along, so they could eat better and get some fresh air. "I was fierce with desire that children play with Herschey," Bella recalled about that time, "for they shunned him and he loved them dearly." (p. 125) Soon, the management noticed how sickly Herschey was, and sent the whole group back to the city.

Herschey Lang died at age 5, after a long illness that included fevers and paralysis and a lot of lost weight at the end. "My mother was mad with the pain of her loss," explains Bella (p. 157). "So it fell to me to arrange for the burial." The last sentences of the memoir present a painful scene: "My mother and I, carrying Danny in my arms, attempted to follow the hearse on foot for we could afford no carriage. But the hearse moved swiftly. Herschey was light."

Herschey Lang didn't live long, but he was loved, dearly loved, by his mother and sister, right to the end. And he was never forgotten.

See also:

Lisa Muir, "Rose Cohen and Bella Spewack: The Ethnic Child Speaks to You Who Never Were There," College Literature (Winter 2002), online here.

March 20: Fred Rogers (1928-2003)

[Image description: Mr. Rogers, at his closet, with one arm raised as he dons his familiar red cardigan]

"You are an important person just the way you are."

This Thursday would have been Fred Rogers's 80th birthday. In observance of the date, the City of Pittsburgh (Rogers's homebase) is inviting folks everywhere to wear their favorite sweater -- if you have one, a zippered cardigan would be most appropriate -- and send in a photo or video. Here's a video explaining "Won't You Be My Neighbor?" Day.

Fred McFeely Rogers wasn't disabled, but for many American children, his show was an early introduction to people with disabilities, adults and children, as "neighbors"--ordinary, interesting, full members of the community. Longtime cast members on Mister Rogers' Neighborhood included Chef Brockett (played by the late Don Brockett), owner of Brockett's Bakery, who sometimes talked about his physical disability (he had a visible limp); and Mayor Maggie (played by Maggie Stewart), who was a professional ASL interpreter as well as a town executive. Violinist Itzhak Perlman was a guest on Rogers's show, and later played at Rogers's funeral, expressing his admiration for the man.

Children with disabilities were regularly cast as Mr. Rogers's friends, and he spoke with them in the same vein of polite curiosity and spontaneous decency that he did with all his guests. (See the late Jeff Erlanger's fond remembrance of his appearance on Mr. Rogers, including clips, here.) In a well-known episode of the show, Rogers took viewers to visit Children's Hospital of Pittsburgh, to demystify the experience of hospitalization. Rogers's Let's Talk About It: Extraordinary Friends (Penguin Putnam 2000) is a picture book for very young children, featuring photos of six real kids playing, disabled and non-disabled, with short bios of each kid in the back--so they're not just models or wheelchair users, they're real kids--pet owners and team members, who like pizza and dolls and swimming. The text of my favorite page:

"If you feel like trying to help somebody, it's a good idea to ask first. Sometimes people want help, and sometimes they don't."

I'll be wearing my cardigan tomorrow.

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.

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.