An Evening with Shelley Barry

South African filmmaker and artist in residence at Temple’s Institute on Disabilities, Shelley Barry will be presenting her new work at the Film and Media Arts Department on the Temple University campus, Thursday, December 7th at 7:30pm-9:00pm. Shelley's work ranges from traditional to experimental documentary, narrative and video art. She explores the cinematic aesthetics of filming from her wheelchair and also engages in subject matter that cross reference disability and sexuality. She is a recent graduate of the MFA program and has to date won 5 awards for her films during her student years. Shelley is also a published poet and has actively worked in her country as a disability activist serving the Presidencies of both Nelson Mandela and Thabo Mbeki.
For more information on the films, contact Shelley directly.

DATE: 7 December 2006
TIME: 7:30-9:00pm
VENUE: RM 3, Basement, Annenberg Hall
ADDRESS: 2020 North 13th Street, Philadelphia , PA 19122

We invite you logon to the Disability Studies Meetup website, http://disstud.meetup.com/1 Once you are there, be sure to RSVP so we will know to expect you, and feel free to share your suggestions on ways to accommodate your needs.
Sponsored by the Institute on Disabilities and the Film and Media Arts Department at Temple University.

Introduction to Sign Languages and Deaf Culture

Image of Dr. Bill Vicars signing APPLE from his online curriculum resource.

A colleague asked about information about teaching an introduction to sign languages within a larger course so I put together this outline of a lesson plan and some resources for people to explore the issue further. The version below has live links but see http://linganth.blogspot.com for a version with the links spelled out.

A ONE DAY INTRODUCTION TO SIGN LANGUAGE AND DEAF CULTURE

When I teach one class on sign language, I try to introduce pieces of the phonology, grammar and general cultural aspects.

Basic Background:

Sign languages are different from both spoken languages and from each other. There is no universal sign language. Because Deaf people can’t hear the spoken language of the country, a sign language like American Sign Language has a different grammar from spoken language. It is also different from other sign languages—even British Sign Language—because of the separate histories of American and British Deaf communities. Sign languages are also not spelled out words, although fingerspelling can be used if you want to translate a written words like the name of an unfamiliar town into sign language.

American one-handed alphabet

British two-handed alphabet

Phonology:

Language is made up of smaller units (for example the unvoiced p vs. voiced b in English /pit/ vs. /bit/). The pieces in sign language differ but as with spoken languages words are created by layering kinds of pieces together—handshape, placement and orientation are some of the basic pieces.

(Video examples of all words in capital letters can be found at
the ASL browser.)

APPLE is signed by a twisting knuckle in the cheek

Change the handshape to a pinky finger twisting and you get JEALOUS

ONION has the same handshape as APPLE but is signed at the eye

The differences between DEAD and BET includes differences in the orientation of hands


Grammar:

American Sign Language is different from Signed English. American Sign Language, like other natural sign languages, use space to convey information that in spoken English or Signed English (signs done in English grammatical order) is done with multiple words

The ASL word GIVE implies a giver and a receiver: (I)GIVE(you)

Would translate in Signed English to

I GIVE TO YOU

something that makes no sense in ASL because it becomes I (I)GIVE(you) TO YOU.


You can also inflect verbs like GIVE in various ways.

When you discuss people in ASL, they are given specific spaces in the “signing space” you use, the plane in front of you where your hands move. If you set up that you are in a room with two people or just mention two people and give them metaphorical spaces, you can indicate who you are giving to (or that they are giving to each other) by where you start or finish the sign. If you have Jane on the left and Conor on the right, you can indicate that Jane is giving Conor something by moving one hand in a GIVE handshape from the Jane position to the Conor position.

You can inflect GIVE and some other verbs in a number of other ways as well. You can change it to indicate that you are giving to a number of people by using a one handed version of the GIVE but move it repeatedly towards different spots in the plane in front of you.

Change it to indicate you are giving it to everybody or a large audience by moving the one-handed version of GIVE in a large, smooth arc, done left to right if you are signing with your right hand.

Cultural basics:

Signed languages around the world have often been banned because they weren’t thought of as proper languages.

Deaf people were often taught by “oral methods” where they were expected to lip read and learn to speak despite not being able to hear what was being said. While some students, especially those who went deaf later in life, can learn to lip read fluently, it is a very difficult way to get information and sometimes impossible for those born deaf. Only 40% of spoken English can be perceived on lips.

One reason Deaf people fight cochlear implants is that they don’t see them as the cure that many medical authorities claim they are and see them as another form of oralism.

The first American school for deaf children was started in 1817 by Thomas Gallaudet and Laurent Clerc. Thomas Gallaudet was a hearing American clergyman who was sent to Europe to learn how to teach deaf children. He first went to England where he was told he could be taught an oral method if he stayed 10 years and swore himself to secrecy. He then met the head of the French school, which taught in sign language, and was told it would take a year and he could tell anyone he wanted. He took the offer, went to France and a year later sailed back with Laurent Clerc, a Deaf man who was the star pupil of the Paris Institute. On the long boat ride back, Gallaudet practiced his French Sign Language with Clerc and Clerc learned written English. Together they convinced the Connecticut State Legislature to give them money to start their school. They taught in sign language adapted from French Sign Language and the home signs students brought into the school.

Clerc went on to found dozens of schools around the country.

Starting in 1880, international sentiment moved against sign languages and most countries went to oral teaching methods. Deaf organizations such as the U.S. organization the National Association of the Deaf, also started in 1880, fought against this.

Gallaudet University founded 1864 in Washington D.C., has always taught in sign language and is in many ways the center of American Deaf culture.

It wasn’t until the 1960s that William Stokoe, a professor of English at what was then Gallaudet College gave a modern linguistic description of American Sign Language . This gave sign language a legitimacy it did have before.

The 1987 “Deaf Pres Now” protests at Gallaudet University were seen as a turning point because the Deaf students demanded that their culture and language should be taken seriously.

See Monaghan, Schmaling, Nakamura and Turner's Many Ways to be Deaf for more information on this, including much much more non-US information


Photo from Deaf President Now Protest from Yoon K. Lee

Web resources:

ASL Browser is a great online dictionary.

ASL University has an introduction to sign language with lots of nice still pictures.

ASL Overview

Karen Nakamura's site has good general material on Deaf Culture and sign languages.

The 1988 Gallaudet Deaf President Now protests


A sampling of printed resources:

Alessandro Duranti's Key Terms in Linguistic Anthropology has my most straight forward description of the beginning basics, and LeMaster & Monaghan in Duranti's "Companion to Linguistic Anthropology" has a longer linguistic anthropology oriented introduction to sign languages


My latest book,
Interpersonal Communication, has the Key Terms piece, a brief excerpt from LeMaster & Monaghan and a piece on Deaf churches:


If you would like more a linguistically oriented introductions to sign language, Clayton Valli and Ceil Lucas's Linguistics of American Sign Language is a clear introduction to general issues in ASL and sign language grammar which comes with a DVD that should be really useful--I've never seen it but Clayton Valli was a master poet and linguist.


Klima and Bellugi's Signs of Language remains a classic overview on how the linguistics of sign languages in general work:


My Amazon.com list with other favorites


As a lot of these books are expensive, you might want to see if your library has them before you buy.

What's in the notebooks of Joseph Gousha, Jr. (1921-1998)?

There's just a little sentence in the online catalog entry about the Dawn Powell Papers at Columbia University Rare Books and Manuscripts libraries: "There are 4 scrapbooks of her husband, Joseph R. Gousha, recording the plays he saw in Pittsburg [sic] from 1910 to 1914, and 4 journals of her son."

What's in those four journals of Joseph R. Gousha Jr.?

There's a disability history project calling out to be done here. Joseph Jr. is one of the so-called "hidden horde"--a man with autism born decades before autism was named. His isn't a pretty story, but it's well-documented, because his parents were both writers; and it's well-preserved, because his mother Dawn Powell was a novelist and playwright of some note. She kept diaries and wrote letters, too--and she wrote a lot about her only son. The story of Joseph Jr. (he was called "Jojo" by family in his life, but I'm going to call him by his formal name) is in there--here are the outlines I can glean from online accounts of Powell's life:

Joseph Gousha Jr. was born 22 August 1921, in a difficult delivery, in Manhattan. He was the only child of Dawn Powell (1896-1965) and Joseph Gousha (1890-1962), both writers, though his father also had a career in advertising. By the time young Joseph was three or four (about the time the photo above was taken, with his mother), it was clear that he was different from most children--he got labeled "retarded," and "schizophrenic," but most accounts agree that "autistic" would be the label he'd have today. His parents hired a live-in nurse, Louise Lee, who stayed with them even during Joseph Jr.'s frequent hospitalizations and residential school placements, beginning in the late 1920s.

Here are some terse lines about him from Dawn Powell's 1930 journal entries:

July 28. jojo came in from country to go to Mt. Sinai with Louise and Bobby. Sick-looking.

October 28: Worried alternately about book and Jojo. One worry lulls and absorbs the other.

November 2: Took Jojo to Dr. Jamieson's at Seagirt [New Jersey] for school. Beautiful place but it was hard on the poor little darling and me too.

November 5: Pompous letter from Jojo saying he's studying French and German so I guess he's happy.

In 1938, the 17-year-old Joseph was moved to Gladwyne Colony in Vally Forge, PA, where he lived for the most part until 1952. In 1947, he injured his mother during a home visit, requiring Powell to be hospitalized for more than two weeks. In 1954, Louise Lee left the Gousha household because of her own declining health, and Joseph's parents looked into a lobotomy to make his behaviors less violent; novelist and family friend John Dos Passos is said to have dissuaded them from this course of action. Joseph's parents both became ill in the late 1950s, and both died from colorectal cancers in the early 1960s. His guardian thereafter was his mother's cousin Jack Sherman, who recalled in a radio interview about Powell, "She loved Jojo very much, but realized there was nothing much she could do for him." Joseph R. Gousha Jr. died in 1998, at the age of 77.

If you're looking for more information, or you need a project and you live near New York City, those four journals of Joseph Gousha Jr., should be worth a peek, no?

International Symbol(s) of Access

This Call was first posted back on July 7, but I've only recently learned about it. We are inviting readers of DS,TU to contribute. More details on the website of the Center on Human Policy, Law, and Disability Studies.

Call for Submissions – International Exhibition on the International Symbol of Access
7/7/2006

The International Symbol of Access (ISA), used in a variety of specific locations to represent purposely-facilitated access, has become ubiquitous throughout the world within just a few decades. Found wherever people move in physical space, navigating environmental barriers, this symbol is among the most widely recognized representations of disability. While it provides daily interactions with issues of accessibility and disability, its design and purposes in different cultural contexts are neither obvious nor uncontested. Indeed, many individuals and groups have modified the ISA to represent a variety of perspectives and goals. A tremendous diversity of designs abounds.

We seek to collect signs used in different locations for an exhibition of the International Symbol of Access, to be shown in 2007. If you have a photograph or document with a variant of the symbol and wish to donate it to our ISA archive, please send it to the organizers, along with the details of its location (e.g., accessible door in Hyatt Hotel, Bethesda, USA), the date, any commentary you wish to include, and your contact information, preferable as digital files.
Contact information available here, http://disabilitystudies.syr.edu/news/default.aspx?st=21

Happy Deaf Thanksgiving

Check out Deaf Thanksgiving: A New Tradition by Mark Drolsbaugh, to read about one plan to solve the conundrum of wanting to spend a holiday with your family, but also with people who speak your language and get your culture. The idea is to get together with Deaf friends on the Saturday after Thanksgiving, for a meal gathering that doesn't even need to involve traditional elements (because, of course, by Saturday, nobody's looking for more turkey dinner). Sounds good to me. Enjoy! (Thanks to the ASCBlog for the tip about this.)

Disability Blog Carnival #4 is up NOW!

It's Thanksgiving Day in the US, but we've got a UK host this time, so put down the turkey leg and go check out the Carnival at Diary of a Goldfish... you'll want to get comfortable, it's a wonderful, big collection of links, focusing on adaptability and "different ways of shaking one's thing." Go read. Now. And start sending links for the Disability Blog Carnival #5, to be held at Planet of the Blind on December 14. (Deadline for entries is December 11.) The theme next round is "Traveling with a Disability: The Good, the Bad, and the Ugly." Just in time for the holidays! Thanks to Goldfish for stellar hosting this round, and to Stephen and Connie for taking on the December installment. (Do you want to host? We're scheduling the 2007 slots now. Leave a comment and we'll work out your date.)

Going Native with Blue: Ciqneqs, a Child of the Clouds

Blue at Gimp Parade is spending the US Thanksgiving week writing about disability issues among Native Americans. I'll join her with this post. Years ago, I was studying someone who studied California's native cultures, and came across Ciqneqs, a "simple simon" character from Chumash legends.

[Detour: The Chumash language is transcribed into our alphabet using some diacritical marks and some characters we don't ever use (a question mark without the dot, for example). I can't type them in here. Ciq?neq?s is actually written by two of those question marks, and the C and S have marks on top of them. I have no idea how it's pronounced--I've only read it on the silent page, and said "Sick-nex," which is unlikely to be accurate.]

These stories are found in the book December's Child: A Book of Chumash Oral Narratives (UC Press 1975) by Thomas Blackburn. Blackburn compiled Chumash oral narratives collected by the Smithsonian (I don't remember whether Blackburn or someone before him translated these into English, though). The book gives exact sources--which person told which tales to the original folklorists--but I didn't copy those over when I was reading. There are two Ciq?neq?s stories in the book; this is the longer one, but it's more interesting to my eye.

Once there was a village with only a few families living in it, and in two of these families there was a man and woman who married one another when they came of age. After their marriage, they began to have children, and their first twelve children were all boys. The last, however, was a girl. The children all grew up, and one day it was discovered that the girl was pregnant.... [section about a makeshift paternity test omitted here]

When the child was born the brothers called the ?alaxlaps to come and name him. (The ?alaxlaps was a kind of priest. He could tell whether or not a person would be fortunate in his transactions, and also by the planet of a person what would be his or her fate. He was an anatomist, physiognomist, and astrologer.) The ?alaxlaps asked who the child's father was. One brother said to ask the child's mother. Then the mother said her baby was a sowing of the clouds. When the ?alaxlaps heard this, he said to her: "Ah, girl, you were born to be happy. For it is your lot to give birth to this child of the clouds. Name him Ciq?neq?s."

When the child, Ciq?neq?s, grew old enough to go on errands, there was an old woman in the village who was his grandmother's sister. This old lady was very much inclined to be a sorceress. Ciq?neq?s knew about this. One day one of his uncles asked the boy to take his old woman over to his camp on the beach where he was clamming. She was quite old and was blind. Ciq?neq?s led the old lady to the camp, which was close to a precipice. Noticing this, the boy left the old woman at the camp and looked over the cliff. He saw there was a cave at the foot of the cliff that would be covered by water at high tide, but which was now dry, and that there were many large rocks scattered around the entrance.

He went back to the old woman and said: 'Let's go a little further.' He gave her her cane and led her down the edge of the cliffi nto the cave. He told her: 'While you're here, I'm going over to the house and I'll return.' Then he left quietly. Once outside the cave, he began to pile up stones until the entrance was completely blocked. Sometime later, the uncle noticed that it was high tide and thought to ask Ciq?neq?s how the old woman was. 'No animal will harm her,' said Ciq?neq?s. 'Is she away from the reach of the tide?' asked the uncle. 'Yes,' said the boy. Later, another old woman, missing her neighbor, told the uncle: 'You had better go and see what Ciq?neq?s has done with his grandmother's sister.' The uncle went, and not finding the old lady anywhere returned and said: 'She is not there.' Then the other old lady said to Ciq?neq?s: "What did you do with her?' The boy answered: 'I put her in a cave.' 'Why did you put her in there?' 'She fooled the world too much by means of her black magic.' Then the old woman exclaimed: 'You really are a child of the clouds, and only the clouds can punish you. But we must be patient with you, because if the clouds punish you by means of a deluge of water, the punishment will fall on us also.'

There are other Ciqneqs stories, but this one has most of the usual elements of it--taking orders literally, giving cryptic answers to all inquiries, going unpunished because he's a "child of the clouds." He frustrates the Yowoyow, the devil, in another story, with his strange conversational style, until the devil gives up and goes away disgusted. He sings a creepy song to scare away his fellow villagers, ending with the line, "I am son of the dead, and therefore I am hungry." He kills a little brother in his care by misconstruing the directions his parents left him. He tries to bed his sister after misunderstanding his grandmother's instructions to marry. "Siqneqs did many other stupid things, but his parents always sent him on errands anyway," explains one storyteller. "And even today, when parents scold their children they're apt to say, 'That's just like Siqneqs!'"

Another story in the Blackburn book concerns "Joaquin Ayala's Daughter," in which a daughter is born to parents who have consulted a sorceress to conceive; the daughter wanders away and is lost. She is found, but explains that she was following her mother up the mountain. "Then the old woman said to Joaquin Ayala and his wife, 'Here is your little girl. But she is not going to live, she is going to die. And I will tell you something else: this girl was not born naturally and she will not grow. She has the appearance of a girl, but she isn't. Take her now.'" The girl does die. The couple tries again, has another daughter, but she too dies. The "unnaturally born" child is strange, and cursed, and dies young--in fact, she's not even a child at all: "She has the appearance of a girl, but she isn't."

I don't know enough about Chumash culture to say whether or how these stories illuminate it. But the history of families and disability, across cultures, is full of folk explanations for a child's differences. There are admonishments against punishing the child (like in the Ciqneqs story), but also cold finger-wagging: Joaquin Ayala is told, your child is like this because you did something wrong. And we know that this belief is hardly confined to Chumash legends, or even to the past.

[Image above is taken from Grant Campbell, The Rock Paintings of the Chumash (UC Press 1965).]

Georgina Kleege's Blind Rage, Berkeley, November 30

If you're in the Bay Area next Thursday, you won't want to miss attending a reading and discussion at Mrs. Dalloway's bookstore in Berkeley, where Georgina Kleege will be talking about her new book, Blind Rage: Letters to Helen Keller (Gallaudet University Press 2006, cover shown at left).

Wheelchair Dancer just this week posted the first paragraph of Blind Rage--go have a read. And you may also want to check out Kleege's earlier book of essays about blindness, Sight Unseen (Yale University Press 1999).

Civil Rights online archive--where's disability rights?

There's a cool new website, The Seattle Civil Rights and Labor History Project, now fully operational, according to a recent announcement on the H-Net. I recently read Susan Schwartzenberg's Becoming Citizens (UW Press 2005), about the Seattle-area families that pushed for educational rights for disabled children in Washington State--a right they won, with a law that became a model for the IDEA. Great story, important story, it must be mentioned on a Seattle civil rights history project site, right?

Um... no.

Well, maybe there are.... no. Searching the words "disabled," "disability," and "disabilities" gives no hits; neither does "handicap" (always worth checking in historical archives), "blind," or "deaf," or "wheelchair" or "accessible" or "ramp".... do you get the idea? I know there have to be other disability rights stories in Seattle history--where are they? Then again, it's the city where an alternative weekly columnist recently forgot that disability rights are civil rights.

Here's a start: There are photos from a 20o4 ADAPT action in Seattle at Harvey Finkle's site; and also at the site for the Center for Disability Rights in Rochester (I found the above photo of Seattle ADAPT protesters at the latter site).

November 17: Dahlia Ravikovitch (1936-2005)

When I am depressed, I am less than a driven leaf.

Today (or November 27) would have been the seventieth birthday of Israeli poet and translator Dahlia Ravikovitch (also sometimes found as Dalia Rabikovitz), who died last year in Tel Aviv (suicide was presumed, but later dismissed, as the cause). Ravikovitch has been called "the greatest Hebrew woman poet of all time," and her ten books of poetry include verses taught to Israel's schoolchildren and set to music. She also translated poems by Yeats, TS Eliot, and Poe, as well as PL Travers's Mary Poppins. She slept days, and wrote in the night. She wrote only by hand (no typewriter or computer), and kept every draft she ever penned, back to school notebooks from childhood.

Ravikovitch spoke and wrote about her life with depression, including hospitalizations and several suicide attempts. One of the stories in her collection Winnie Mandela's Football Team (1997) is set in a psychiatric hospital; her poem "Pride" ends with the lines

I told you, when rocks crack, it comes as a surprise.
All the more so, people.

Disability Podcasts Roundup #2

Our first disability podcasts roundup (back in March) took note of the brand new Ouch! podcast... so now that Liz and Mat have posted their eighth monthly podcast, we're clearly due for another look around the world of disability podcasting.

The news from Disability Nation is that they've gone to a weekly, half-hour podcast schedule; the latest episode discusses visitability with Eleanor Smith of Concrete Change (that's her at right), accessible voting, Medicare and wheelchairs, the Church of England and severely-disabled infants, and more--great coverage of current events and excellent interviews are the hallmarks of Disability Nation--and they post a transcript of each episode, too.

There's a new disability podcast out of Ireland, named Outside the Box, produced and presented by Olan McGowan (shown at right)--there's only one episode up at iTunes so far, but it sounds good (as you'd expect, it's a radio show on RTÉ). I'll look forward to finding more of those.

Other disability-related podcasts that are currently posting new episodes (as of this writing) include:

Cripcast--by a 30something Florida man named Dwight
Disability 411--by Beth Case, a college disability counselor based in Houston
ssdRadio--by Jonathan Ginsberg, a Social Security lawyer based in Atlanta
Handimobility--Philippe, Gabrielle, and Mony are podcasting in French--which I don't follow, but it sounds cool
Autism Podcast--by Michael Boll; lots of interviews and discussions
Blind Cool Tech--by Larry Skutchan; frequent new episodes are posted
Blind Access Journal--by Darrell Shandrow
The Extraordinary Everyday Lives Show--by Dave and Mike in Australia

If you produce a disability podcast, or you hear a good one, let us know, and we'll add it to the list.

November 14: Silken Laumann (b. 1964)

Before '92 I was a strong person, but I wondered how strong I would be if something bad happened. Then something bad did happen and I didn't wallow in sorrow. I just figured, O.K., what do I do now?

Canadian rowing champion Silken Laumann (left) was born on this date in 1964, in Mississauga, Ontario, the daughter of recent immigrants from Germany. She earned a bronze medal at the 1984 Olympics, and was on the Canadian rowing team for the 1988 Olympics. While training for the 1992 Games, her right leg was badly injured in a collision between two boats. After winning the bronze in Barcelona anyway (two months later), she took off a year for further surgeries and rehabilitation, then returned to win a silver medal in the 1996 Olympics. She's now retired from competition, and does motivational speaking, and advocacy for inclusive and creative children's play and fitness programs, in Canada and abroad (through Right to Play).

Agnes Nanogak Goose, "Blind Boy"

Inuit artist Agnes Nanogak Goose (1925-2001) was born on November 12, on Baillie Island in the Canadian Arctic. The print above, Blind Boy (1975) is based on one of her drawings, which in turn is based on an Inuit folktale, "The Blind Boy and the Loon." The print was made to illustrate Maurice Metayer, ed. and trans., Tales from the Igloo (Edmonton: Hurtig Publishers 1972). Nanogak was part of a community of artists based at Holman, on Victoria Island, off the northwestern coast of Canada.

Veterans' History Project at the Library of Congress

In time for Veterans' Day Weekend, check out the Veterans' History Project at the American Folklife Center, Library of Congress. It's a wide-ranging effort to gather first-hand records--ephemera, interviews, images, etc.--from all US veterans and others (USO workers, flight instructors, medical volunteers), involved in any 20th-century conflict. They're seeking donations and they offer a Field Kit for anyone who wants to conduct an oral-history interview to add to the project's holdings.

What's already online is searchable, and full of disability history stories. For example: There's a transcribed interview with Robert Del Malak (b. 1946), a Vietnam-era veteran; he was in the Navy for a year when he began to experience vision loss from macular degeneration, and was discharged. George Baxter (b. 1930) lost a leg in Korea--his photo (shown at left) and audio of an interview with Baxter are on the site now. There's also a photo album and audio of an interview with Charles Amsler (b. 1913), a WWII medical corpsman who lost a leg to bone cancer in 1948. Wendy Wamsley Taines (b. 1971) describes her PTSD from service as a medic in the Persian Gulf War, in an audio interview at the site.

These are just collections with online content. There's much, much more in the project's archives. Go have a search around--it's incredibly varied content, and the collection is still growing.

Disability Blog Carnival #3 is UP NOW!

Disability Blog Carnival #3 is up now at David's Growing Up with a Disability blog. He set as this edition's theme "Spirituality," and got a lot of great responses to his request. He's got subheadings about reflections, beauty, pity, hierarchy, and inclusion, and David's done a fine job of assembling these links into a readable, thoughtful post. Carnival #4 will appear at the Diary of a Goldfish on November 23--get your entries in via blogcarnival.com, or directly by email, to be a part of this traveling festival of great blogging!

Press Release from AIDS 2006 Conference

The banner from http://www.aids2006.org/

On August 17, activists from the Deaf community and the community of people living with disabilties came together for a press conference on the issues of HIV/AIDS. People from Africa, North America and Latin America shared stories about how they were helping build programs fighting HIV/AIDS in Deaf communities and communities of people living with disabilities around the world. Although there is still far to go, there were many articulate advocates in the fight who described their work in Kenya, Nigeria, South Africa, Canada, the United States and elsewhere. I hope to provide short reviews of these biographies as well as profiles of leaders in the upcoming months but first wanted to post our press release on the subject.

PRESS RELEASE
First released August 17, 2006, AIDS 2006, Toronto, Canada

The International AIDS Society and World Federation of the Deaf must recognize and act upon the HIV/AIDS crisis among people with disabilities including Deaf people globally.

FACTS:
• Deaf People are as or more likely to be HIV+ as hearing people but little information is kept on the problem and few resources are being directed towards prevention, testing or treatments for Deaf people.
• 2003 statistics from Maryland (US) show Maryland Deaf people to be almost 11 times more likely to be HIV+ as hearing people (Schmaling & Monaghan 2006)
• Statistics from Kenya show that Kenyan Deaf people have a similar incidence of HIV (7%) to the hearing population (Taegtmeyer, Henderson, Angala, Ngare 2006)
• Deaf children in particular are at risk because of high rates of sexual and physical abuse of Deaf children related to the inaccessibility of information (J of Am Deafness and Rehab Assn 1992).
• People living with disabilities in general are often at risk for abuse. For example, women with disabilities in Southern Africa are at a higher risk of rape than other women (Groce 2005).
• Deaf people and people living with disabilities were not recognized as at risk at the AIDS 2006 convention, in the 2005 UNAIDS report, or in most global discussions of HIV/AIDS. No Key Speakers at AIDS 2006 on Deaf, hard-of-hearing, or disability issues.
• Few sign language interpreters were available and the conference was unaccessible for people with physical and visual disabilities.

RECOMMENDATIONS:
• HIV/AIDS is a serious problem in Deaf communities and should be recognized as such. We need more information. Health departments should keep statistics on the hearing status (hearing, hard of hearing and deaf) for HIV programs and testing.
• Need more money and resources for Deaf HIV/AIDS prevention and treatment programs.
• Deaf communities must be part of all phases of design and implementation of programs.
• Materials for Deaf people need to be in sign language or have lots of pictures.
• Qualified, sensitive and appropriately trained interpreters provide lifelines to HIV services and treatments presented only in spoken or written language.
• Peer-to-peer education works. We need many more programs.
• IAS and other international organizations must include of people with disabilities and Deaf people in all aspects of the planning and execution of their conferences and programs.

REFERENCES
Groce, N. (2005) Lancet
Schmaling, C., & Monaghan, L. (Eds.). (2006) HIV/AIDS and Deaf Communities. Coleford: Douglas McLean. [Deaf Worlds Focussed Edition, Vol. 22 (1).] Available at: http://www.forestbooks.com/pages/featured.htm
Taegtmeyer, M, Henderson. K, Angala. P, Ngare, C (2006) Responding to the signs: A voluntary counselling and testing programme for the Deaf in Kenya. AIDS 2006 Poster MOPE0876.

November 10: Disability Rights Symposium at Penn

[An announcement posted on H-Disability; links and image added.--plr]

"The Haves and the Have Nots: An Assessment of Disability in the Middle East"
on Friday, November 10, at 9:30am, featuring:

Liat Ben Moshe, Syracuse University: "Disability at War in Israel: A Cautionary Tale on Activism and Resistance"

Sumi Colligan, Massachusetts College of Liberal Arts: "Navigating Paternalistic State and Neo-Liberal Discourses and Practices: The Complexities of Agency for Disability Rights Activists in Israel"

Hila Rimon Greenspan: "The Rise of the Disability Rights Movement in Israel"

Firoozeh Kashani-Sabet, University of Pennsylvania: "The Good, the Bad, and the Ugly: A Historical Overview of Disability in Modern Iran"

Professor Robert Vitalis of the University of Pennsylvania will serve as the discussant.

This symposium will take place in College Hall, Room 205. SPACE IS LIMITED!
For information and to RSVP contact Firoozeh Kashani-Sabet.

Co-sponsored by The Middle East Center and the Barbara Bates Center for the Study of the History of Nursing at Penn's School of Nursing

Bikes, Motorbikes, and Reggie Showers

Sara at Moving Right Along gave me a great opening for my annual post combining my interests in disability studies and NHRA drag racing. (My 2005 post on the subject is here.) She writes:

If you are an amputee, barring other complications, you can probably ride a bike. You can ride if you are missing an arm -- or two! You can ride if you are missing a leg -- or two!

Which gives me an opening to write about double-amputee motorcycle drag racer (and one-time Temple University student-to-be) Reggie Showers (b. 1964; shown at left). Showers, a "bilateral transtibial amputee" since he was electrocuted in an accident at the age of 14, was a Pro Stock Motorcycle racer, piloting a custom bike down the quarter-mile track at more than 180 mph. Showers began racing in 1989 on the International Drag Bike Association circuit, and won the IDBA championship in 1990. At one point, he held fourteen world records in drag biking. He toured with his prosthetics specialist, Tracy Slemker of Prosthetic Designs, doing educational outreach at racetracks during NHRA events. (His racing legs were specially designed for maximum control and minimum weight--so on race day, he was five inches shorter than he was in his everyday legs.) Showers isn't racing anymore--he finished his pro career after the 2003 season.

Said Showers of his hi-tech legs:

I remember back in the late'70's when the accident happened, being very ashamed of being an amputee or "handicapped" person. The word "handicapped" did not sit well with me. Now, in the year 2000, being so-called "disabled" is pretty trendy, pretty chic - I like to show off my legs, I think they're very trick! I like the stares now, I like when people look at my legs. They look at me walk, and it makes me feel good - it makes me feel proud.

HIV/AIDS and Deaf Communities

My first post here was in June. After almost five months of travelling I finally have access again to a regular internet connection and wanted to start posting again on questions of deafness, disabilities and HIV/AIDS. I thought I'd start by posting the presentation I gave in June 2006 at the Society for Disability Studies to give people access to some basic information on the issue. The above image is of Deaf AIDS activist Brad from a profile by Loel Poor. http://www.thebody.com/loelpoor/deafaids/brad.html

HIV/AIDS in Deaf communities
Society for Disability Studies, June 2006, Washington DC
by Leila Monaghan and Constanze Schmaling [1]

My (Leila Monaghan’s) introduction to the problem of Deaf people and AIDS (HIV had not yet entered the discussion) was in 1988 in my first sign language class at Gallaudet University. One of my classmates was an AIDS activist and was regularly volunteering with Deaf people living with and dying from AIDS in New York City. The problem was highlighted for the public in an article in Time Magazine in 1994 and an article in the HIV magazine POZ in 1998 [2]. I was inspired to work on this problem after the death of a Deaf colleague, someone kind, generous and multi-talented and much missed in my profession. Although there were whispers nobody actually said this person died of AIDS. For me AIDS was confirmed only when I found this colleague’s name on the moving website of Deaf people who have died of AIDS. The silence and stilled hands on the topic of my colleague’s death is just a symptom of a much larger problem.

There is still no widespread recognition of the fact that Deaf people are living with and dying from AIDS at higher rates than hearing people, by estimates at rates two to ten times higher than hearing people. Local clinics are providing essential services but most public health authorities do not recognize Deaf people as an at risk population so do not gather statistics. What I would like to do in this paper is present information from the issue of Deaf Worlds my co-author and I have finished co-editing on the problem, discussing the extent of the problem here in the U.S. and internationally as well as discussing some the ways that communities around the world have begun to address this problem.

An analysis of HIV testing data from the Maryland Department of Health and Mental Hygiene’s publicly funded sites in the United States shows the rate for HIV infection there to be twice as high among deaf people than among their hearing counterparts [3]. In 2003, 38,602 hearing people were tested at Maryland public sites (18,572 male, 20,030 female), with 813 testing HIV+; and 832 deaf people were tested (551 male, 281 female) with 38 of those testing positive. Comparatively speaking, 2.1% of the hearing people tested and 4.6% of the deaf people tested were HIV positive. Although it is difficult to judge because of the inaccuracy of the population statistics for Deaf people, when one does allow for overall population estimates, this number rises to an estimate of Deaf people being ten times more likely to be HIV+ [3]. This points to an epidemic that threatens not only the lives of Deaf people but larger hearing populations as well. The public health issues of Deaf people cannot be separated from the public health of entire nations.

According to the Maryland statistics, the epidemic looks different in the Deaf population than it does in the hearing population. In both the deaf and hearing populations, men are more likely to be HIV+ than women. In the hearing population, 2.8% of the men (513) versus 1.5% of the women (300) tested positive. The rates of infection are far closer, however, in the deaf people that took the test: 4.7% of the men (26) and 4.3% of the women (12) tested positive. Given that fewer women than men took the test, this implies that there might be significant numbers of undiagnosed women in the population.)

Compared by age, deaf people have a greater risk of infection (a ratio of >1) than their hearing counterparts for every age category but the one for people 60+. The younger the deaf person, the proportionally greater risk that a deaf person will be HIV+ than their hearing counterparts (see chart).

It is important to note that just because the problem of HIV/AIDS might be less in a group in hearing society, it does not mean that HIV is not an issue in the equivalent deaf group which can be seen when the data on ethnicity is examined: Among the hearing people tested, 91% of the people testing positive were African American (740), 7.3% were white (59), and .6% were Hispanic (15). Among deaf people tested, 81.6% of people testing positive were African American (31), 15.8% were white (6) and 2.6% were Hispanic (1).

The most severe problem for deaf people is among intravenous drug users (IDUs). One in every ten deaf IDUs tested HIV+ (19 of the 190 IDUs tested), almost double that in the hearing population of IDUs Also an issue is transmission by males having sex with males, although the rate among deaf people is slightly lower than among hearing people.
Although 38 cases is too small a sample from which to draw definitive conclusions, the distribution of HIV infection within these cases shows that HIV infection expresses itself differently in the deaf population than the larger hearing population. As can be seen from the above graph, younger deaf people, white deaf people and deaf women are all more likely than their hearing counterparts to be represented in the HIV+ population. The main weapon to fight the spread of HIV/AIDS is information and education. Awareness campaigns both by the government and by non-governmental organisations are mainly through the mass media and through educational materials. Deaf people often have limited access to this information as it is presented either in spoken or written language. This communication barrier is also present in medical settings as health care providers usually do not know sign language. The result is that the typical health education programmes as a means of combating the spread of HIV/AIDS do not reach the deaf communities. One survey with 450 deaf adults in eight US states [4] showed that while most deaf participants had basic HIV knowledge, there were gaps in knowledge about transmission and protection. Another US survey shows, however, that if information was provided in American Sign Language, deaf adults benefited greatly from the educational intervention [5].

At Gallaudet University in Washington DC, deaf peer health educators (PHAs) formally and informally teach sexuality and HIV/AIDS information to the Gallaudet University campus community on the individual, group, and community levels. The PHAs, who are extensively trained to become knowledgeable and skilled role models, use a variety of visual approaches which include presentations, workshops, drama plays, flyers and banners. This has proven to be an effective way to pass information to deaf and hard of hearing college students [6].

That HIV/AIDS poses a serious problem is beginning to be recognised by deaf communities around the world, and some deaf associations have initiated small-scale HIV/AIDS education projects, e.g. in The Gambia and in Ethiopia, where deaf people get basic information on the virus in sign language [7,8]. In South Africa, SLED (Sign Language Education and Development) are publishing educational video materials for deaf students of all ages in South African Sign Language. These materials reflect both urban and rural real life situations in Africa and are specifically aimed at the deaf learner at school [9]. In Kenya, three VCT centres (Voluntary Counselling and Testing) have been established in collaboration with local stakeholders in different regions of the country [10]. In Brazil, outreach programs have been developed to reach deaf people in places where they congregate such as beaches and night clubs [11]. Although vital allies in the fight against HIV/AIDS in deaf populations, these groups lack the necessary funds to conduct large-scale projects and to produce the necessary training materials for their deaf members.

Recommendations
• HIV/AIDS is a serious problem in deaf communities and should be recognised as such.
• Local health providers and health authorities should work together with local deaf communities to develop materials on HIV/AIDS. Development efforts imposed from the outside without consultation with deaf communities have been shown to be problematic [12,13].
• Deaf people need to receive information about HIV/AIDS in their own language, sign language. Materials on HIV/AIDS need to be easily accessible to deaf people. Formats that have shown promise include different types of visual materials such as videos and theatre pieces as well as printed materials with little text.
• Qualified sign language interpreters need to be provided for all situations where information is presented in speech for meetings/workshops/interactions with HIV prevention educators, testing and counseling sites, ASOs, health care providers,
support groups, etc. Qualified, sensitive and appropriately trained interpreters are the single most effective lifeline to all of the above.
• Deaf empowerment and peer-to-peer information networks seem to be powerful tools in preventing the spread of HIV/AIDS and supporting deaf people living with AIDS. It is particularly important that there are both male and female educators.
• HIV/AIDS testing and treatment for deaf people must be accessible, convenient and confidential.
• To date, very little statistical information is available on this problem. Health authorities are encouraged to collect information on the prevalence of HIV/AIDS in deaf communities. You as individuals are also encouraged to send in the names of any Deaf person you know who has died of AIDS if he or she is not already listed on the Remember Their Names Website.

Notes
[1] C Schmaling, L Monaghan (eds), "HIV/AIDS and Deaf Communities (DWHIV)," Special Issue of Deaf Worlds Vol. 22 (1), Spring 2006. Available through http://www.forestbooks.com/pages/Categories/Books/0946252610.html
[2] DVan Biema, D. AIDS and the Deaf. Time Magazine 4/4/1994, 143 (14), 76--77 and S Friess. "Silence = Deaf. In the translation from English to sign language, HIV education loses something: lives." POZ April 1998, 60–63.
[3] L Monaghan, "Maryland 2003 HIV infection statistics for hearing and deaf populations: Analysis and policy suggestions," In: Deaf Worlds 22 (1), Spring 2006. (see above). The authors thank the Maryland Department of Health and Mental Hygiene for access to these statistics.
[4] M F Goldstein, E Eckhardt, P Joyner, R Berry, "An HIV knowledge and attitude survey of deaf US adults," In: Deaf Worlds 22 (1), Spring 2006.
[5] T Perlman, S C Leon, "Preventing AIDS in Chicagoland: The design and efficacy for culturally sensitive HIV/AIDS prevention education materials for deaf communities." In: Deaf Worlds 22 (1), Spring 2006.
[6] G S Roberts, "Sexuality and HIV/AIDS education among deaf and hard of hearing students," In: Deaf Worlds 22 (1), Spring 2006.
[7] C Schmaling, D Loum, "The first HIV/AIDS education project for deaf people in The Gambia," In: Deaf Worlds 22 (1), Spring 2006.
[8] A Teferi, "Deaf people and HIV/AIDS in Ethiopia," In: Deaf Worlds 22 (1), Spring 2006.
[9] K Maclons, "Opening the door of life skills, HIV and AIDS education for the South African deaf learner,"In: Deaf Worlds 22 (1), Spring 2006.
[10] K Henderson, "Short report of Liverpool VCT and care (LVCT) work in progress," In: Deaf Worlds 22 (1), Spring 2006.
[11] I El Maerrawi, "A program for preventing sexually transmitted diseases for deaf people in the city of São Vicente, São Paulo, Brazil," In: Deaf Worlds 22 (1), Spring 2006.
[12] N Kakiri, "A survey of the development assistance desired by deaf Kenyans: Final report." 2005. Unpubl. Report, Gallaudet Univ. Washington, D.C.
[13] A T Wilson, N O Kakiri, "Improving overseas development assistance to Deaf communities in developing countries." Paper submitted at the Supporting Deaf People Online Conference 2005.

New Memoir: Anne Finger, "Elegy for a Disease"

While polio is a physical experience, it is also a social one…. Polio does not belong just to those of us who were infected by it, but to our mothers and fathers, our sisters and brothers, our partners and our children; to those who cared for us, to those who brutalized us (often not mutually exclusive categories); to those who saw us as palimpsests [tablets] on which to write their fear, their pity, their admiration, their empathy, their discomfort.

--Anne Finger, from the online version of the Smithsonian's exhibit "Whatever Happened to Polio?"

If you enjoyed Anne Finger's earlier book, Past Due: A Story of Disability, Pregnancy, and Birth (Seal Press 1990), or her disability-themed novel Bone Truth (Coffeehouse Press 1994), you'll want to check out her new memoir, Elegy for a Disease: A Personal and Cultural History of Polio (St. Martin's Press 2006), just out.