That's my boy!

Go see my son in his "Christmas stockings" over at Gimpy Mumpy (in a photo taken November 2004).

CFP: The Alliance for Excellent Education in D.C.

The Alliance for Excellent Education is seeking proposals for its 2006 breakfast forums in Washington, D.C. These are events where policymakers, educators, researchers, advocates, the media, and others can learn about successful programs and practices in the nation's middle and high schools. Programs and practices in adolescent literacy, individual graduation plans and academic counseling, data-driven decision making, teacher recruitment and retention, performance incentives to improve teaching, and implementing college-preparatory curriculum and bringing struggling high school students to grade level are especially desired. Submit a one-page proposal to kmohr@all4ed.org by January 23, 2006 with the subject line BREAKFAST PROPOSAL. Questions? Contact Jeremy Ayers at jayers@all4ed.org or 202-828-0828.

December 17: John Greenleaf Whittier (1807-1892)

Today is the birthday of American poet John Greenleaf Whittier. His parents were Massachusetts Quaker farmers, and Whittier himself was a lifelong Quaker, active in the abolition movement. Late in life, he lost much of his hearing, and found social demands of his fame most unpleasant:

I am unhappily notorious and cannot hide myself. My deafness makes me confused and uncomfortable when strangers are present. The great and really painful effort I am compelled to make when in company to listen and try to understand, and make fitting replies, and the uncertainty which I feel when I venture to speak, whether I have heard aright, all this affects my nerves, and costs me nights of sleeplessness and days of uneasiness. In fact I am what the Turks call "a cut-off one," so far as society is concerned. I am afraid you did not take into account the certainty that as soon as it is known that I am in your premises, a steady stream of interviewers, autograph-hunters, and people with missions will flow in upon you. It would be like having a waif from Barnum's Museum shut up in your library, and people coming to see what it looks like.

--John Greenleaf Whittier to Annie Field, 2 October 1885; original letter in the Field Collection, Huntington Library, San Marino CA

More mark-your-calendar info...

While you're filling in those fresh new 2006 calendars, mark this one down too:

The Women's Studies Seminars at the Huntington Library present:

Women, Disability, and the Arts

February 25, 2006
10am-12noon (lunch to follow)
Huntington Library, San Marino CA

Featuring:
*Victoria Ann Lewis, Assistant Professor, Department of Theatre Arts
University of Redlands
"The Theatrical Landscape of Disability: Domestic vs. Transcendent Geographies"

*Helen Deutsch, Associate Professor, Department of English
University of California, Los Angeles
"Truth and Beauty: Women, Disability, and Literary Form"

*Catherine Cole, Associate Professor, Department of Dramatic Art and
Associate Director, Interdisciplinary Humanities Center
University of California, Santa Barbara
"Five Foot Feat: Dance, Disability, and the Art of the Ordinary"

Moderator: Penny L. Richards, Research Scholar, UCLA Center for the Study of Women

So, if you're in the Los Angeles area in late February (and really, there are few better places to be that time of year, climate-wise), come out to the Huntington Library in San Marino for a morning of presentations from three great disability scholars. The event is free-to-the-public, fully accessible, and if you say you read about it here, I'll buy you a coffee. (Offer limited to the first two DS,TU readers to claim it.)

'Reframing Disability through the Arts,' March 15, 2006

Please mark your calendars and contact the Institute on Disabilities for more information about an exciting mini-course entitled “Reframing Disability through the Arts” that will be taking place on the Temple University Main Campus on March 15, 2006. Drawing on a variety of artistic media including film and memoir, Dr. Simi Linton will explore the shifting meanings of disability in contemporary society and the role those definitions and images play in shaping the lives of people with disabilities.

The presenter holds a Ph.D. from Hunter College and is a leading scholar and proponent for the establishment of Disability Studies programs such as those at Columbia University, Syracuse University and the University of Illinois-Chicago. Simi Linton is President of Disability/Arts consultancy, the author of two important books in the field, Claiming Disability: Knowledge and Identity (New York University Press 1998) and My Body Politic (University of Michigan Press 2006) and co-convener of the University Seminar on Disability Studies at Columbia University. The interactive presentation will last from 9:30 am to 12 noon and will be free of charge except to those who wish to take the course for continuing education credits.

Contact Mike Dorn disstud@temple.edu to be placed on the mailing list for this event.

“Reframing Disability Through the Arts” is jointly sponsored by the Institute on Disabilities, the School of Communications and Theater, and the Center for the Humanities at Temple (CHAT).

More of Simi's writings can be found elsewhere on the Disability Studies, Temple University blog: here and here.

December 14: Rosemary Sutcliff (1920-1992)

Today (December 14) is the birthday of English writer Rosemary Sutcliff, born this date in 1920 in Surrey. She wrote mostly historical novels for young readers, books about Roman Britain and Arthurian themes. And she wrote a lot of them, with about sixty titles to her name.

Rosemary Sutcliff was diagnosed before the age of three with a form of arthritis, and she used a wheelchair throughout her life. In the 1920s and 1930s, that meant few opportunities to attend school, so her mother read to her at home: Kipling, Beowulf, fairy tales and legends of King Arthur. She showed talent as a painter of miniatures, and her novels reflect the same attention to detail. At least one of her well-known books, Warrior Scarlet (1958), features a physically disabled main character, a boy in Bronze Age Britain born with a "withered arm." A number of Sutcliff's titles are still in print, and older editions can be found on the bookshelves of many schools and libraries.

RIP: Eugene McCarthy, 1916-2005

"As long as the differences and diversities of mankind exist, democracy must allow for compromise, for accommodation, and for the recognition of differences."
--Eugene McCarthy

That's me at left, in 1968, wearing a flower-shaped Eugene McCarthy sticker on my dress

What's the disability angle? There are several--maybe readers can point us to others. But here's one: When Eugene McCarthy ran for as an independent candidate for president in 1976, he refused to make his medical records public, citing privacy as the reason, and insisting that the president should be elected "on the basis of his or her record of service, of thought about the issues and programs to deal with them, and not on the basis of any private status such as that of patient." [That link probably requires a subscribing account, but the cite is George J. Annas, "The Health of the President and Presidential Candidates--The Public's Right to Know," New England Journal of Medicine 333(5 October 1995): 945-949.]

Eugene McCarthy died yesterday, in Washington DC, after several years living with the effects of advancing Parkinson's disease.

Disability Blogs Roundup, #5

Fa-la-la-la-la... 'Tis the season for a disability blogs roundup. And disability bloggers have some great ideas about gifts and travel, but I'll start with Lady Bracknell's sharp take on "special" advice for disabled shoppers. Gimpy Mumpy is FULL of "gimp gear" gift suggestions lately, like a lightweight red fire extinguisher, the Bust Pillow, the Notepaper Roll Holder, and the totally excellent Shopping-Bag Caddy. But she also has a warning for store personnel in this busy season: Don't hand me anything when I enter your store. Teri Adams at Crip Chronicles just went to an equipment expo, and came back with stories of exploitation--so caveat emptor. As an alternative, Ziggi suggests some handmade, low-tech solutions--if you're handy with a sewing machine, powertools, or duct tape.

Traveling this holiday break? Angry Gimp recommends Matching Houses, a service that facilitates vacation house swaps with accessibility as a priority. Darren Hillock cites a newspaper story that says the airlines have a lot to learn in their handling of wheelchairs (and their owners). Someone who knows: I don't believe most of us can match the travel adventures of Windchime Walker in Beirut, but she's been generous enough to write a lot of blog entries about it (with pictures and powerpoint slideshows, too). "I was in the WC when the announcement came through that we were returning for security reasons--there was an electric wheelchair on board that had not been properly gone over by security. I knew it must be mine. And it was." It's not just chair users who encounter strangeness at the airports; Gimpy Mumpy passes along the warning, "If you have an artificial leg, be prepared for it to be X-rayed separately." (And speaking of inspecting prosthetic legs....) Maybe that's another reason Maz is taking a cruise instead? If you're planning a trip to Chile, Scott Rains suggests the new wheelchair-accessible, multisensory, Braille-labeled nature trail at Lago Penuelas National Park. And don't forget to tip well in your travels.

It couldn't happen today...or could it? Several blogs have caught the story of troubling loopholes in the proposed new EPA guidelines for testing pesticides. Maybe tomorrow: Evan Brustein at Beyond the Ramp wonders, what will happen to high-level competition rules and records when top athletes with prostheses can outperform top able-bodied athletes? (I grew up in a sport--drag racing--where technology was always visibly integrated into, even central to, the competition--maybe that's a model to consider.) Still on the near-future, Mary Johnson applauds the NYTimes story titled The Problem with an Almost-Perfect Genetic World. Ending this glimpse of the near-future on a bright note, Ziggi at Wheelchair Diffusion has assembled some great photos of kids in chairs, playing sports.

Language stuff, as usual: The Ouch! blog reports on a British poll that looks at offensive terms used on television (not for the squeamish, they say). "Crip" isn't "cripple," Mary Johnson explains, but it's still a complicated term, depending on who's using it and to whom they're referring. In a related matter, Shawn at Along the Spectrum had a nice series of entries in November called "Full Disclosure"--bottom line being, in the case of autism, "There’s a lot to gain from full disclosure and anything else has potential for harm."

News from the North Pole--well, or that direction, anyway--the CBC's website has a monthly column called "Disability Matters," with three disabled writers contributing thoughtful essays--check it out. The most recent entry is Helena Katz's commentary on discrimination against blind job applicants. And Marvin of the Laurent Company had a fine trip to Finland in November.

Finally, stocking stuffers from the world of books, music, and movies: David Faucheux recommends The Speed of Dark by Elizabeth Moon; Michael and Jamie Berube liked the film version of Harry Potter and the Goblet of Fire. Check out Blogging Bookworms for a rich and varied array of disability-conscious book discussions, including recent entries about Thurber's My Life and Hard Times, William Horwood's Skallagrigg, and H. G. Wells' The Country of the Blind. A South Park DVD is perfect for the Timmy fan in your life (and there are a surprising number of us, it turns out). Angry Gimp is listening to Sigur Ros. And if you get an mp3 player for a gift this season, check out the Blobcast, where David N. Wallace is doing disability commentary as a podcast (the highlight is his mash-up of tech podcaster Cameron Reilly's "rant" with "Winter in Melbourne," on Blobcast #3). Gimpy Mumpy suggests Child's Play as a cool donation opportunity in this season of giving--and if you've spent much time hanging around a children's hospital, you'll see her point.

Happy New Year! Next disability blogs roundup will post in early January 2006. Tips are always welcome, just drop me a note in the comments or at my email address.

Dynavox at the Parade

A balloon accident at the Macy's Thanksgiving Day Parade in New York City last week caused a lighting fixture to fall into the crowd, injuring 11-year-old Sarah Chamberlain (she's okay). But did you catch the disability culture angle of this story? Inclusion Daily's Dave Reynolds did. (Here's the Albany newspaper's version.) Seems the lighting fixture fell last into the lap of Sarah's sister--26-year-old Mary Chamberlain--or would have, if she didn't have her wheelchair's tray attachment in place. And a Dynavox communication device on the tray (shown at left). "We were going to leave Mary's tray in the van. But Sarah said, 'No. Mary needs to talk.'" Mary's got a unique parade story to tell now. (Macy's has agreed to pay the family's medical bills--and replace the Dynavox if it's unrepairable.)

Starving for Access

A very 2005 addition to the tradition of the hunger strike--a blog with daily updates on Ryan Commerson's outdoor hunger strike (starting Monday, November 21) to improve conditions at the Michigan School for the Deaf and at the Detroit Day School for the Deaf. So far, dozens of students and supporters have joined Commerson on the sidewalk outside the MSD gym in Flint, and he's been getting some local television coverage. It's cold in Michigan in late November, so some visitors have brought coats and blankets, too.

Says Commerson in his press release, "I have had it. I cannot tolerate the daily occurrence of language deprivation any longer."

[Hat tip to Dirksen Bauman, who posted about the Starving for Access blog on DS-Hum. I'd have put this in the monthly disability blogs roundup, but given the nature of this one, I thought it needed to go up sooner.--PLR]

UPDATE: Commerson's hunger strike has ended as of Monday 11/28. A vigil continues until promised changes begin to be realized.

Announcing new academic discussion listserv, called DS-GRAD

PLEASE FORWARD THE FOLLOWING INFORMATION

At the December 1, 2004 Graduate Student Forum at Columbia University, sponsored by the Disability Studies Network, the students in attendance expressed interest in creating a new listserv for Graduate Students in Disability Studies and using it to organize future collaborations. This listserv has now been created and is being managed by the student Scott Gordon <scott23 AT gmail.com>. It is hoped that DS-GRAD (Graduate Students in Disability Studies) will develop into a great resource - students can use it to network, consult on research projects and plan meetups in the MidAtlantic region.

The DS-GRAD discussion list is open to all current and potential graduate students interested in disability studies in the social sciences, the humanities fields and the arts. To subscribe to the list, you would need to send a message to listserv AT listserv.temple.edu and the message should say SUBSCRIBE DS-GRAD Yourfirstname Yourlastname [For example, I would send a message saying 'subscribe ds-grad mike dorn']. Online management and list archives are available here -
http://listserv.temple.edu/archives/ds-grad.html

Anna Stecklin, R. I. P.

In a posting on DS-Hum tonight, Lawrence Carter-Long pointed out this story from the Poughkeepsie Journal. Bravo to the 1033 Group for replacing the numbers with names, and reminding the world that these 650 people were people.

Sadly, there are plenty more cemeteries full of numbers out there: Ingleside Cemetery in Nebraska, for example, has about 1000 pre-1956 markers, none showing names, just numbers, for former residents of the one-time "Asylum for the Chronic Insane" (now Hastings Regional Center). A Minnesota organization, "Remember with Dignity," has taken on the challenge of honoring the institutionalized dead by replacing numbered markers with names in that state. (When Minnesotan Bertha Flaten's numbered stone ["7," above] was replaced, the original marker was sent to the Smithsonian for display, along with her admission photograph.) Other states have similar projects.

I'm not the only historian of disability to start thinking of her first project while standing in a cemetery. But the cemetery I was standing in was Oakwood Cemetery in Raleigh NC, and the handsome obelisk I was looking at not only bore a man's name and dates (1806-1870), but the family's inscription, "Blessed are the Pure of Heart." Not typical for the gravestone of a 64-year-old man, but I knew a little about Thomas A. Cameron--I knew from his family letters that he was an "innocent," in the gentle language of his parents' generation. I wanted to know more.

And now, I hope someone will learn more about Anna Stecklin, and the other 649 people buried in Poughkeepsie.

Co-Editor's Note: DS-Hum is the acronym for the important and active discussion listserv called Disability Studies in the Humanities. The discussion list is open to all scholars and students interested in disability studies in the humanities fields and the arts. To subscribe to the list, you would need to send a message to LISTSERV at LISTSERV.UMD.EDU and the message should say SUBSCRIBE DS-HUM Yourfirstname Yourlastname [For example, I sent a message saying subscribe ds-hum mike dorn]. It may take a while for the list moderator to approve your subscription. Online management and list archives are available here - https://listserv.umd.edu/archives/ds-hum.html

November 13: Edward Rushton (1756-1814)

How can you, who have felt the oppressor's hard hand,
Who for freedom, all perils would brave,
How can you enjoy peace, while one foot of your land,
Is disgraced by the toil of a slave!

Today is the birthday of English abolitionist and poet Edward Rushton, born this date in 1756 in Liverpool. He went to sea as a young apprentice. At 17, he found himself disgusted at the treatment of Africans aboard the slave ships where he worked; he was charged with mutiny for his efforts to improve that treatment. When an epidemic of eye disease spread among the captives, Rushton tried to help. But he caught the disease himself, and lost his own eyesight.

Rushton returned to England frustrated by conditions he had witnessed, and began to publish poetry on political subjects, including The Dismembered Empire (1782), The West Indian Eclogues (1787), and Will Clewline(1806). He wrote noted letters to George Washington and Thomas Paine, questioning the hypocrisy of founding a nation based on human freedoms while maintaining the institution of slavery. Rushton married and had four children. He worked as a newspaper publisher and bookseller in Liverpool, and was involved in raising funds for the founding of the Liverpool School for the Indigent Blind (1791). In 1807, Rushton's vision was somewhat restored by surgery. He died in 1814.

"Edward Rushton," based on this historical figure, is a character in the unusual soundscape experience "The Dark," which exists both online and as a touring installation. "In The Dark your eyes will be of no use to you - instead, you will need to rely on your ears and your imagination to find your way through a maze of troubled ghosts and unlock the mysteries of their lives," explain the creators, and Rushton's poems are part of the audio content of the experience.

Were you there?

Over at the livejournal community Quiescent Voices, deafscribe is in search of a replacement for this photograph, taken at the Deaf President Now demonstrations at Gallaudet University in 1988. He's the tall guy in the hat between the A and the D. The banner was borrowed from Howard University. The splotch in the lower right is where his cat recently, um, got sick and damaged the print. If you or someone you know has a cat-free copy of this image, contact deafscribe.

Blind Blake, Calypsonian

For Ahistoricality, here's the Bahamian banjo player "Blind Blake" (aka Blake Alphonso Higgs, b. 1915, pictured at left with his poolside band), who led the Royal Victoria Hotel Calypso Orchestra in Nassau. According to this bio, he was not blind as a child; liner notes say he became blind in 1934, and had a guide dog called "Music" who stayed with him during performances (but I can't find the dog in any photos of Higgs). His old LPs are collector's items, but a track by Blind Blake and his Royal Victorians is included on the more recent Putumayo Calypso compilation. Higgs is often credited with writing the folk music standard "Run Come See, Jerusalem," about a disastrous hurricane that hit the Bahamas in 1929--but it's also been credited as "traditional," and he surely never got the royalties he should have. [A fine online exhibit about calypso and its history is here.]

Turns out there was an earlier African-American ragtime guitarist called "Blind Blake" (c1893-1933; possibly named Arthur Phelps or Arthur Blake), but they were two different guys.

Is there a geography to Disability Studies?

Thanks to Rev. Sean Parker for sharing this brilliant new Google Map application, Frappr! He uses it to track his readership. Where are you from, disability bloggers and blog readers? Simply follow the link below and stick your geographical 'pin' in the map. http://www.frappr.com/disabilitystudiesreaders

This is going to be cool ... Update: Google Maps in the funnies ...

Sorry, Virginia, there are no busses, trolleys or subways running anymore :-(

Philly Future is a group blog that fosters the regional community of bloggers and activists. As such, it offers a wealth of information and opinion on the ongoing SEPTA (Southeastern Pennsylvania Public Transportation Authority) strike. Still looking for decent coverage of the disability angle, however.
http://www.phillyfuture.org/taxonomy/term/29/9

Update: Governor Rendell warns that the ongoing strike jeopardizes the prospects of SEPTA getting additional money from the State of Pennsylvania to ease its chronic budget woes. From the Philadelphia Inquirer, Thursday, November 3, 2005.

Update II: The strike finally ended after one week, thankfully.

Disability Blogs Roundup, #4

I'll start the roundup this month with a welcome to some new disability-related blogs. Australian David N. Wallace has put up TWO: blob is his personal blog, and LifeKludger is specifically for posts about strategies and technologies for barrier-busting. Samples: the former has a nice post on the concept of disintermediation as it relates to the history of disability rights; the latter has a recent post about the kinds of specialized robot arms Wallace would like to see developed.

Adaptive technology is also on the mind of the Angry Gimp: "People, quit telling me I'll walk again" is her plea to well-meaning folks who shower her with reassurances about medical advances that will cure her someday. "If people really want to help me out, really want to make me feel better, they'll tell me that there are people doing research to create adaptive equipment to make my life easier. They'll tell me that they are working for political causes that will give me the funding I need to survive." And speaking of making life easier (and surviving, too), David Faucheux suggests there might be a market for a "best cities" list for blind people, a list of places with audible traffic signals and well-maintained sidewalks, where the medical professionals and transit workers are enlightened.

Michael Bérubé has A Stupid Proposal: how about we retire the diagnostic insults ("idiot/moron/imbecile") already? Language, as always, matters. Edge-Centric and Ouch! have recent entries on the Spazz wheelchair--yeah, it's a real product name. The marketers claim it means "wild and crazy" in California, where the the company's based--but I'm here in California, right at the beach, and I say we have plenty of better words for them to try instead. At Along the Spectrum, Shawn has a terrific rant on autism terminology.

The mainstream press doesn't regularly cover the disability angle on current events, but blogs do: Edge-Centric is your go-to blog for perspectives on the Alito nomination, the Wal-Mart memo, and the passing of Rosa Parks, as well as ongoing coverage of Gonzales v. Oregon (the physician-assisted suicide case that the Supreme Court will decide this term). Ouch!, meanwhile, has also had an entry on Wal-Mart, and commentary on Canada's recent immigration ruling about families and disabled children. And history blogger Ralph Luker at Cliopatria briefly noted Freedom Ride '05, in which disability rights advocates are touring Illinois to protest continuing institutionalization in nursing homes and other group facilities. Haven't found any blogging on the plight of disabled survivors of the earthquake in Pakistan and India, but Chapati Mystery has been tracking relief operations, and there are news items here and here on the subject, for starters.

What are folks reading? Books are Pretty says the French graphic novel Epileptic is both "incredibly ambitious" and (at 361 pages) "exhausting." Jamie Bérubé and his dad are discussing Harry Potter and the Half-Blood Prince; Kestrell's reading Harry Potter fanfic with disability themes, and plenty of other stuff, too.

And finally, it's that time of year: Angry Gimp (who lives in Minnesota) wasn't so angry to find some wheelchair-friendly winter gear that's actually comfortable and warm; Katja at Broken Clay also blogged about the perils of winter weather, or not (she's in Colorado).

Whew! Okay, next round-up should go up sometime in early December. Tips are always welcome.

October 31: Dale Evans and Judy Fryd

Two influential mothers of children with developmental disabilities were born on October 31, just a few years apart. The better known of the two was American entertainer Dale Evans, born on this date in 1912; she wrote the cowboy standard, "Happy Trails to You," among other songs. She also wrote the parent confessional Angel Unaware (1953), about her daughter Robin Rogers (1950-1952), who had Down syndrome. The royalties of the bestselling book were donated to early work of the ARC (then the Association for Retarded Children). Read Dick Sobsey's Inclusion Daily Express essay The Other Dale Evans to learn more.

The lesser known of the two (shown above) was Englishwoman Judy Fryd, also born on this date, but in 1909, in London. The oldest of her four children, Felicity (1938-1993), was denied access to any kind of schooling, so in 1946 she wrote a letter to a magazine called Nursery World, and ended up organizing the Association for Parents of Backward Children. The group Fryd founded is now called Mencap, the biggest advocacy organization for people with learning disabilities in the UK. Judy Fryd was Mencap's vice president for twenty years, and before that served a quarter century as editor of the Association's magazine, Parents Voice.

Dale Evans died in 2001; Judy Fryd, in 2000. Their work, and that of countless other parents and advocates of their generation, means that today, more rights are recognized, more children are educated, and more people are embraced in their families and communities.

Some Print Sources for Further Reading:

Barbara Bair, "The Parents Council for Retarded Children and Social Change in Rhode Island, 1951-1970," Rhode Island History 40(November 1981).

Katherine Castles, "'Nice, Average Americans': Postwar Parents' Groups and the Defense of the Normal Family," in Mental Retardation in America: A Historical Reader, Steven Noll and James W. Trent, eds. (NYU Press 2004).

Kathleen W. Jones, "Education for Children with Mental Retardation: Parent Activism, Public Policy, and Family Ideology in the 1950s," in Mental Retardation in America: A Historical Reader, Steven Noll and James W. Trent, eds. (NYU Press 2004).

The Upcoming Mid-Atlantic Popular American Culture Association; MAPACA for short

This coming Friday November 4th the MidAtlantic Popular American Culture Association, MAPACA, will be holding their annual conference. Yours truly will be presenting a paper on Mutant and Cyborg Images of the Disabled Figure in Science Fiction. You can check out the conference schedule online at MAPACA conference listing. Hope to see you there.

Keeping an eye on the possible SEPTA strike

Temple University and the Institute on Disabilities are drawing up contingency plans given the possibility that SEPTA busses and subway trains will not be functioning after 12:00 am on Monday morning, October 31. Frightening, eh? If you are Philadelphia residents, you know what this means for the wide portion of our population that depends on public transportation. I usually bike to work, but may well be stepping in with my truck to be sure that my colleagues like Carol Marfisi that use Paratransit make it in next week. More insider information can be found on the blog of part-time SEPTA employee Pa_SuburbanGuy .

sharing some of my news

Dear Readers,

I have so much to tell you about the past few days. I've hardly have a chance to breath let alone keep in touch with loved ones. To a certain extent I've intentionally stayed busy - and succeeded so far in staving off loneliness while my partner Carla Keirns is working hard in Botswana [see her news here]. As you will see from reading this message, it has been an eventful week!

The same Wednesday morning that Carla flew out of Philadelphia on South African Airlines, Carol Marfisi and I headed up to New York City for the "Introduction to Disability Studies" presentation at Columbia University. It was a fun day where we had the opportunity to interact with Disability Studies scholars Simi Linton and Kim Reid, introducing our new student Scott Gordon to their perspectives. We also tried to advertise our new Graduate Student listserv amongst the audience, but found that besides Scott and Simi Linton's assistants, there weren't any graduate students in attendance. Our intention to head down to hear Richard Thornburgh's speech at the New York Law School that evening was foiled, as I didn't have a sufficiently detailed map, and the person directing our driver hadn't driven in the city for perhaps 20 years. It ended up as a comical loop trip around the lower tip of Manhattan before we took the decisive step of driving back home. Carol's assistant Maggie and our new student Scott were in a good frame of mind and helped to make the trip more enjoyable.

Friday evening we had another New York City adventure. Through one of my blog subscriptions [Philly Future], I had read about a young artist with multiple disabilities who also happened to be an incredibly soulful jazz singer. I showed the artist's website to my colleague and disability culture fan Carol Marfisi, and we decided to check out her next show. It so happened that this show was scheduled for Friday evening at the Staten Island Club for the Deaf. So off we drove - Carol, Mike and Carol's Liberian personal assistant, Matina - to listen to a jazz singer perform at a Deaf club. How disability multi-cultural could one get?

The club itself was a blank storefront set back from the street, painted grey with 'SICD' scrawled in tape on the window, and a ripped up and barricaded sidewalk in front. You certainly wouldn't go through that hazed glass door if you didn't know the address ahead of time. It was raining, so I headed in on my own to check out the scene. The gentleman at the door seemed friendly enough and didn't speak or even respond when I said "Hello." We gestured to one another as I checked out the bar and the side room with seating and a makeshift stage under a bare light bulb. The flyers for the show indicated three artists for a 7$ package rate, so I paid for my ticket and went back to escort Carol and Matina. Matina in particular had no idea what to expect, only learning 20 minutes earlier about the nature of this concert and professing that she didn't like jazz or blues music.

We camped out in the front row - I sat on the right-hand side of the aisle, and Carol sat on the left-hand side. To my right were several young women and men who appeared to be using signs in addition to their voices to communicate. They seemed like typical young adults. To Carol's left was a young woman wearing large dark sunglasses, oversized tan beret, and a large scarf. This fashionably dressed woman chatted amiably with Carol about the scene. Carol didn't recognize Melody Gardot right away, but I had seen her picture on the website. On the wall to the right was a memorial to the great teams of Deaf baseball players sponsored by the Staten Island Club for the Deaf. Carol wanted me to take a picture of the wall on her cameraphone. I felt like I should check with Melody first. Her website mentions that she prefers that audiences refrain from taking flash pictures, which can trigger her neurological symptoms. Since her accident, getting hit by a car while riding her bike a year or two ago, Melody has been struggling with debilitating pain and auras. She walks now with a cane, even though she is barely 20 years old. Anyway, as I mentioned Melody's name, she perked up, and it finally dawned on Carol who she was sitting next to. The friendship blossomed from there - Melody introduced us to her mom who was sitting against the wall to the left, and we ended up taking several pictures (without flash) of the entire group. One of these pictures, and Carol's version of this story, can be found below.

The Staten Island Club for the Deaf has served as gathering spot for NY Deaf community for over 50 years. In March 2005, SICD opened its doors to something new; a interpreted live musical performance by singer/songwriter Christian Davis. That night had proved very successful, bringing 80 hearing and 60 Deaf people together to enjoy one event. This marked the second live musical performance at the club. The performing artists, Christian Davis, Christina LaRocca and Melody Gardot, coordinated with selected sign language interpreters, meeting earlier in the day to rehearse and share song lyrics. Christian Davis knew enough signs to introduce the songs himself. With his throbbing bass guitar, we could feel the vibrations through the floor. Many of the songs were accompanied by Sign Language interpretation. The audience cheered for both the performers and the interpreters.

Melody walked up to the stage gingerly and set up for what turned out to be a stellar set, including 'Wicked Ride,' her wittiest and most obviously radio-friendly song. Explaining that she was feeling a little dizzy/woozy that evening, she said "good night" after that set, and we left with her to get back to Philadelphia. I got back home that night at 1:00 am with a smile on my face.

The following morning I pulled myself out of bed and attended the symposium End-of-Life Decision Making: The Right to Die? organized by graduate students from the Temple University Law School. Some of the heavy hitters from the arenas of law and ethics, the independent living movement, and the 'death with dignity' movement were there to present. The presentation, appropriately enough, was held in an old chapel that had been remodeled into a meeting space, and the audience was largely lawyers seeking professional development credit. The papers and discussions were scholarly and thought-provoking. Receiving particular scrutiny were Oregon's approach to physician-assisted dying, and the politics of the Terri Schiavo case. It was a good preparation next week's focus group. Carol Marfisi and I are heading up to Harrisburg to meet with a number of stakeholders, family members and people with disabilities who are well-known in Harrisburg policy circles. Last June the Pennsylvania Department on Aging held a conference about improving care of Pennsylvanians experiencing terminal illness and increasing public awareness of important end-of-life decisions and safeguards. We will be helping to draw out the perspectives of focus group participants on difficult ethic case studies, in the hopes of showing how these end of life discussions impinge on the mission of organizations concerned with protection and advocacy for
Pennsylvanians with disabilities.

Yesterday (Tuesday) was particularly busy. It was the day of the Ramadan Fast-a-Thon, sponsored by the Temple University Muslim Student Association. This is an annual fundraiser, where students and staff at Temple University are invited to join in the Ramadan fast, if only for one day. The president of the MSA Omar Arshad came to recruit students from my undergraduate 'Schooling and Development in Third World Societies' class. Several volunteered to sign the pledge, requiring a daylong fast. No food, no water, to consumption through the mouth of any kind. In addition, we are to focus on maintaining clean thoughts and focus on showing compassion toward others - no verbal lashing out, backbiting, etc. After fasting from 6:00 am to 6:00 pm, all are invited to join the campus' Muslim students at Mitten Hall's great court. We break the fast with dates and bread and then share a feast prepared by the Muslim students.

I have been looking forward to this day, and ate a full meal the night before. Unfortunately I woke up even earlier than I had intended that morning, at 3:30 am, with a gurgling tummy! Well, at least I had plenty of time to down my breakfast of Cream of Wheat fortified with fruit before the 6:00 am sunrise. At the 11:40 - 1:00 class session that morning, several students told me that they were indeed fasting. Stacey Brown was experiencing cramps, but said she would make it. Anwar Jones forgot about the fast, but hadn't had his breakfast anyway that morning. He would have qualified except for the fact that he was chewing a stick of gum. That evening Alicia showed up to join us. She had overslept that morning and missed breakfast, but didn't seem too much worse for wear. After breaking the fast, the Muslim students engaged in their evening prayers - non Muslims watched with interest - before we all formed lines (sex segregated, I might add) and filled our plated at the buffet. While eating the great Middle Eastern food, we listened to distinguished speakers explained the importance of fasting to Muslims, and the purpose of this event. Philadelphia businesses sponsored the fasting students. The funds collected from these businesses, and from the collection plate passed at the banquet, were given to the Kashmir Disaster and Development Fund, a new non-profit created in the wake of the Pakistan earthquake.

I need to get back to my grading, but thought you might enjoy hearing about one of the more interesting weeks I can remember. Or maybe others have been similarly memorable, but I haven't had cause to write them down. Mike

A few current happenings in Deaf theatre...

On Sunday, the LA Times had a long article about Deaf West's new drama, "Open Window," now playing at the Pasadena Playhouse; and they followed up Monday with a substantial and positive review of the show. Linda Bove plays a linguist, and Shoshannah Stern her daughter, a psychologist assigned to evaluate a "wild child" case, a deaf young man apparently without language from an badly abusive and deprived childhood. Next up for Deaf West, another musical, from the same director who helmed the company's acclaimed versions of "Oliver!" and "Big River"--this time, an (as yet untitled) original adaption of the Sleeping Beauty story. (There are LA Times links in this paragraph that will probably expire--so read them while they're hot.)

Meanwhile, in Rochester NY, the National Technical Institute of the Deaf (NTID) Performing Arts program is offering "The Passion of Dracula" just in time for Halloween (October 27-30). There's even a Halloween party after the Saturday night show, and a matinee on Sunday.

Changing Social Representations of Disability

Mike Dorn, Coordinator of Temple University's Graduate Certificate in Disability Studies and Assistant Professor in the Urban Education Program, helped kick of the Pennsylvania Association of Rehabilitation Facilities (www.parf.org) conference at Penn State on September 28, 2005, where he appeared on a plenary panel together with disability studies scholars Douglas Biklen of Syracuse University and Michael Berube of Penn State. Each were invited to speak very generally on the representation of people with disabilities; Mike Dorn, a cultural geographer, offered an overview of the historical construction of disabled bodies and the institutions charged with “administering” disability in the Philadelphia area during the nineteenth century. Douglas Biklen spoke of the representation of mental retardation in films like "There’s Something About Mary", "The Eighth Day", and "Rain Man". Michael Berube wrapped up the panel with a critical analysis of racial and disability discourse in the media coverage of Hurricane Katrina. All of the papers will appear in the meeting proceedings. Michael Berube has also posted his paper on his blog, http://www.michaelberube.com/index.php/weblog/disability_and_disasters/

On October 18th, Mike Dorn was also interviewed on the potential of websites and blogs as avenues for reaching consumers with disabilities. The story will appear in OMMA: The Magaine of Online Media, Marketing, and Advertising (http://publications.mediapost.com).

Shout Out for Disability Culture

I guess I am a diehard skeptic, or at least more dubious that I realized I was. I never thought I would experience disablity culture in a truly arts culture way heading out to the clubs last night, but "hallelujah" I was wrong. Instead I stumbled upon a Summa Cum Lade experience combining disability culture, Deaf culture, and a cool intertergenerational vibe. Mike happened upon an interview and the notice about an upcoming show over the internet, and together with my friend Matina we set out for our inocuous coffeehouse, the 50 year old Staten Island Club for the Deaf. If you were to attempt to characterize us, our group was composed of a middle class able-bodied white male, a physically disabled feminist and a beautiful French-speaking Liberian. We certainly didn't feel like we were a 'typical' audience for this club. But somehow when we entered this small, retro-looking cafe, our identities seemed to merge and at the same time became magnified and more defined. I sat next to this chic looking woman with so much classical, artsy essence coming from her outward as well as inner presentation. She initiated conversation (small talk) with me, an act that flattered me. As we progressed in our conversation I suddenly realized I was hanging with the performer that we came to see. Her unassuming, modest demeanor didn't surprise me, though. Usually the bigger the talent the smaller the scaffolded ego.



This woman, Melody Gardot, is a huge talent. She sings her songs without pretense, just as she interacts with strangers who she has never met. Her voice was confident and mature. a direct contrast to her fresh, youthful appearance. At times, it was hard to wrap my head and spirit around her persona . She sang the narrative of a life I had myself experienced; how could she know these feelings, this wisdom, this cruel reality, this power to toss your head and look people in the eye, letting them know you're going to be who you're going to be? I don't know whether Melanie identifies herself with the worn and tattered disability rights community but if she doesn't, that's alright ... it's all good. Better than good. It's fine and Melanie Gardot is a colorful, striking swath of fabric, essential to creating the more vivid and striking Disability Culture quilt of the twenty-first century.
Melody's personal website - http://www.myspace.com/melody
Melody's professional site - http://www.melodygardot.com
Original interview Mike read - http://www.phillyfuture.org/node/1759
(overly dramatic, but I'm glad I found it! MD)

"Crazy Bet" and her 19c sisters

Reading fiction and researching fact this week has kept me thinking about how easy it has been in the past for women to slip into the category of "madwomen"--either intentionally, or at the convenience of others.

First, the factual case: Elizabeth "Crazy Bet" Van Lew (1818-1900, pictured at left), lifelong Richmond VA resident, was also a Quaker-educated abolitionist who convinced her mother to free their family's slaves in the 1850s. By the time the Civil War started, Elizabeth was a spinster in her forties, and her politics had already made her seem odd. It didn't take much to nudge her own reputation into the "madwoman" zone--she just dressed shabbily, kept her hair messy, and muttered to herself, enough that she was seen as a harmless wretch. Thus, she managed to maintain an amazing network of informants and message-passing, enough that Ulysses S. Grant considered her an invaluable source of wartime intelligence. After the war she was intensely disliked and impoverished (she spent her family's fortune during the war, in part for bribing wardens and such), but was given the government job of Postmistress of Richmond in recognition of her service; when she died, grateful Bostonians erected a memorial over her Richmond grave.

But the more usual story we find is the sadder case: I just read Jean Rhys's Wide Sargasso Sea (1966), in which two women are accused of madness, or driven to it, or both. A mother's disabled child dies after injuries sustained in a fire--and her frantic despair is enough to call her mad, and lock her away forever. Her daughter is accused of madness by association, because a fortune-seeking husband wants her out of the way. The unnamed husband is meant to be the Rochester character in Jane Eyre; the wife, the archetypal "Madwoman in the Attic" in the same novel. Rhys took on the challenge of filling out Bertha Mason's back story, to brilliant effect. The women are friendless, in the sense of having no one with any power who can help them. They have husbands, but the husbands are part of the effort to see madness in every quirk.

The husband problem reminded me of Elizabeth Packard, the midwestern minister's wife who was institutionalized in the 1860s because she didn't want to attend church with her mate. When she got out (after three years), she worked for reforms in state asylums, including the freedom of inmates to receive and send mail, and stricter standards for certifying insanity, especially in the case of married women. In 1864, in Illinois, only her husband's word and one doctor's testimony were necessary to put her away.

It was so, so easy to see a woman as a madwoman in the 19th century, especially if the beholder needed her to be mad. Elizabeth Van Lew found a way to use this thin line to her advantage; Elizabeth Packard worked to protect the women who might too easily be pushed over that line by their husbands.

Print sources of further information:

Elizabeth R. Varon, Southern Lady, Yankee Spy: The True Story of Elizabeth Van Lew, A Union Agent in the Heart of the Confederacy (Oxford University Press 2003).

David D. Ryan, A Yankee Spy in Richmond: The Civil War Diary of 'Crazy Bet' Van Lew (Stackpole Books 1996).

Myra Himelhoch and A. H. Shaffer, "Elizabeth Packard: Nineteenth-Century Crusader for the Rights of Mental Patients," Journal of American Studies 13 (3)(1979): 343-375.

Barbara Sapinsley, The Private War of Mrs. Packard: The Dramatic Story of a Nineteenth-Century Feminist (Kodansha America 1995).

Paul Pena, 1950-2005

The recent passing of bluesman Paul Pena earlier this month got a mention in the New York Times, Time magazine, Billboard, and elsewhere. Pena, born in Massachusetts to Cape Verdean immigrant parents, was blind from birth, and attended the Perkins School for the Blind near Boston. He is best known most recently for his explorations of traditional Tuvan throatsinging, as documented in the film Genghis Blues. He taught himself the unusual vocal skill, and became the 1995 "kargyraa" style throatsinging champion in a competition held at the National Theatre of Tuva. Later in life he used a wheelchair. He died from complications related to pancreatitis and diabetes.

Panel to catch this weekend...

It's exciting to see more and more disability studies panels on conference programs. But Kestrell gives us the heads up that she'll be part of a session this weekend that sounds like a great time:

Representations of Disability and Difference in the Harry Potter Universe
9:00 am - 10:45 am
Alicia Verlager (that's "Kestrell")
Mike Gill
Heeral Mehta-Parekh
Maria Molnar

Gotta be there? Well, get to Salem, Massachusetts, this weekend (6-10 October) for "The Witching Hour," a symposium on the Harry Potter phenomenon. Elsewhere on the program are Heather Lyda, speaking on "Harry Potter: Disability Fantasy," and Shannon White speaking on "Luna Lovegood as Holy Fool."

(I believe this is my second Harry Potter reference in this blog--maybe I should explain that I've never read or owned any of the books, and only watched one of the movies. My reading kid is still a little too young for Potterdom; but I know, I know, the day is coming... --PLR)

Disability Blogs Roundup, #3

Michael Bérubé gets first mention here, for all kinds of reasons: he's a friend-of-a-friend (through Penn State hockey), his writing was the first disability studies stuff I ever read (1994), at a time when I really needed that perspective; and he produces one fine blog. Oh, and his post on Disability and Disasters mentions DS,TU's own Mike Dorn. So go read it.

Next Mary Johnson deserves notice, for two long posts at Edge-Centric on Gonzales v. Oregon, an upcoming Supreme Court case on physician-assisted suicide. On a related topic, Ballastexistenz writes on why the crime of murdering one's adult child is somehow mitigated in the public mind when that child is disabled. "Not really a threat to anyone," she sums up the prevailing opinion. "Just killed her own son, but isn't really a threat to anyone."

Disability etiquette seems to be an ongoing issue, on blogs about disability and elsewhere. The Angry Gimp ponders how she wants to answer the blunt question, "What happened to you?" Her answer (and it's not everyone's): "I'd rather someone take the risk of offending me than feeling alienated and curious for years." But on the wicked side, "It's fun telling people that I've broken 27 bones and watching their eyes pop out of their head."

Lots of non-disability bloggers might find Angry Gimp's post enlightening; there still so much work to be done in dispelling the pity/horror/guilt-driven responses to disability. Xta and Entelechy both posted recently about a lurking discomfort in the presence of people with severe disabilities. The Feminist Mormon Housewives were discussing how they felt about having designated parking for expectant mothers, right alongside (or more likely, in place of) the wheelchair-accessible parking.

Meanwhile....Kestrell's kinda hoping new technology will let her get a braille tattoo...and Scott Rains knows where you can find an accessible restaurant in New Delhi (with a photo of the new ramp at Nirula's to prove it).

As usual, tips are always welcome. The next roundup should post in early November.

Speaking of films...

There will be a Disability Film Festival and Speaker Series in October, co-sponsored by the SUNY-Buffalo School of Social Work and People Inc.'s Museum of disABILITY History. So if you're in Buffalo, NY, any Thursday night in October, make your way to the Dipson Market Arcade Film and Arts Center for 7pm. Here's the film schedule and the speaker schedule.

Desirably disabled

I like to think of myself as a hard liner social model activist when it comes to disability; the notion of disability is one in which I feel most comfortable and genuine speaking of in an academic and political context. I definitely don't like to euphamize it or inspirationalize it.

Temple MFA student Shelley Barry, award winning filmmaker on disability, and an international disability rights activist, presented her most recent work last night to my graduate Disability Rights and Culture course. Over the course of the film screening and discussion I became thoroughly convinced that disability is also a bodily and experiential phenomenon of beauty: a hardcore and erotic at that. She symbolically portrayed in film her experience of physical impairment and socially constructed disability, as it adorned and informed her many identities. What an experience! Everyone in the class had their senses stimulated; at the same time many felt serenely serenaded with feelings of peaceful coherence.

Shelley Barry's 20 minute docu-poem entitled "Whole: A Trilogy of Being" is available for purchase on DVD by contacting the filmmaker at twospinningwheels@yahoo.com. Don't look for mere inspiration or encouragement. This raw and provocative video offer glimpses of how one's mind, body and soul might reach new planes of aesthetic and sensuous appreciation!

Disability History Image #4: "One-Eyed Frank" McGee

When I was a kid, I read the dictionary for fun (sad maybe, but true). Now, I get some of the same kick from biographical dictionaries. I've been trolling through the very searchable Dictionary of Canadian Biography Online for disability history stories to add to the Disability History Dateline. Mostly, you'll find asylum administrators, 19c. figures in deaf education, and nuns who started homes for "the aged and infirm." But every once in a while, there's someone more offbeat.

"One-Eyed" Frank McGee (b. 1882) was a hockey player, and a good one--he led the Ottawa Silver Seven to three consecutive Stanley Cup championships, 1903, 1904, and 1905. In one 1905 game, he scored a fourteen goals, a record that still stands. Then he retired, in 1907. McGee had lost an eye as a teenager (in a hockey accident), and was thinking maybe he'd get out of the violent sport that could put the remaining eye at risk. But that cautious approach seems to have been short-lived, because in 1915 he enlisted in the Canadian Army to fight in World War I. Family legend says he tricked the examiner to get a passing vision test; but a look at the form itself shows the examiner left the crucial space blank--so maybe he noticed McGee's partial blindness and just decided not to record it. Anyway, McGee was injured in battle, and unfit for duty for seven months, but he insisted on returning to combat duty after recovering. He was killed in France in September 1916, during the Somme offensive. In 1945, he was in the first class of inductees to the Hockey Hall of Fame.

In the news...

Update on the Rod Liddle editorial from last week's Times of London: today were published some replies (under the unfortunate headline "Coping with Disability"), including one brief comment, "I have no choice but to live with my disability, but I can choose not to be afflicted with Liddle's opinions." Unfortunately, when those ugly opinions are widely held, they're an affliction for all of us, whether we read them or not.

And big kudos to Joseph Shapiro, whose excellent NPR reporting from the Katrina zone this morning is worth a listen if you get a chance, here. Listen to a medical evacuation organizer tell Carmen Vidaurre that her son Joseph's wheelchair can't be loaded onto the plane. Listen to Curt Decker, executive director of the National Disability Rights Network, comment that "There were really three vectors involved here, race, poverty, and disability."

On the same subject, Marta Russell has a new commentary up at Znet today, Being Disabled and Poor in New Orleans.

Increasing employment among people with disabilities: a major address in NYC, Oct 19, 2005

Plan to attend or watch Richard Thornburgh's speech at the New York Law School. The information below is reproduced from the New York Law School's Labor and Employment Law Program's website - click here.

The Honorable Richard Thornburgh, former Governor of the State of Pennsylvania and Attorney General for the United States, will be delivering a major address at the New York Law School about issues associated with increasing the employment rate among people with disabilities. The Lecture will be held on October 19, 2005 from 6:15pm to 8:15pm in the Ernst Stiefel Room at New York Law School. A light dinner will be served to all attendees.

If you would like to attend, please click here to register to attend the event.

If you cannot attend the Lecture, please click here and register for the Live Webcast and watch Mr. Thornburgh's speech as he delivers it.

If you have any questions, please email lawoftheworkplace@nyls.edu or call Jamie Wenger at 212-431-2127.

Capitol protest

About five hundred disability-rights protesters from across the US visited the Capitol on Monday, organized by ADAPT; over a hundred of them were arrested for refusing to leave private offices, and some spent the night in jail. They targeted members of Congress who had not signed as co-sponsors of MiCASSA and other legislative efforts to combat the institutional bias in long-term care services. The story was widely if briefly reported in local television stations across the US (so there must be footage), and carried, again briefly, to newspapers by the AP (here's a shortlived link to that account, so read it quick). ADAPT's got a longer version, of course, with photos, here, and in this press release.

Why celebrate?

Sigh. Commentator Rod Liddle in the Times of London thinks the public display of Alison Lapper Pregnant is about "the fashion for disability," which he considers a "delusional ideology," and asks, "Why would we wish to pay tribute to disability; if we're being honest, isn't disability bad, wouldn't we rather not have it at all?" The argument sounds very undergraduate. So let's walk him through it like an undergraduate, shall we? This argument is the same as saying that we shouldn't celebrate any minority experience, because it's just so much easier and more pleasant to be a member of the majority. Why celebrate being a woman? It's clearly so much more noble and exciting to be a man like, say, Admiral Nelson (whose Trafalgar Square statue is fine with Liddle--he lost the limb and eye in battle, so that's indisputably tribute-worthy).

The Voices

While clicking around the excellent The Voices Recordings map at the BBC site, I lucked onto the dot over Edinburgh. Each dot on the map leads to a page of sound files of people conversing in that place--so you hear Scots women in Ayrshire talking about shoes, or a family of Kentish fishermen talking about the weather, that kind of thing. They're usually talking about language, whether it's quirks of local vocabulary or accents or the power of certain epithets. Anyway, the Edinburgh dot brings you to a page with five sound files of three actors with cerebral palsy, discussing disability terminology and disability culture. James McSharry, Robyn Hunt, and Malawi Logan are the wonderfully candid, articulate, and frank participants--if you get a chance, have a listen. On childhood taunts, for example, McSharry says, "Somewhere along the line, that language creates a stereotype that it's ok to throw a stone at me."

Philadelphia event to assist hurricane evacuees with disabilities

Dear Colleagues:

This is just one of many stories that are emerging of the difficulties that people with disabilities have had to endure in Hurricane Katrina evacuation and relief.

My employer, the Institute on Disabilities, is holding a 1 day donation event on Saturday, September 24th, 2005. From 8:00 am to 3:00 we are collecting medical equipment in support of people in impaced region who have dire needs for equipment. Many people with disabilities in Louisiana, Mississippi and Georgia were evacuated from their residences without needed equipment.

Location: parking lot at the SE corner of Cecil B. Moore Avenue and Broad Street; the entrance is half a block east of the intersection - turn off of Cecil B. Moore Avenue and head south on Park Street - entrance to the lot is then on the right.

Anyone is welcome to drive up with their donations. We will offer easy drop off and receipts for donated assistive equipment, such as walkers, wheelchair and wheelchair parts (footrests, armrests, seat pads), canes, shower chairs, commode chairs, etc. We ask those making donations to remember we are looking for equipment in good condition, that they themselves wouldn't mind receiving.

Thanks in advance for getting out the word on this, and watch this space for more information.

Mike

-----Original Message-----
From: SDS Listserv
Sent: Wednesday, September 14, 2005 10:03 AM
Subject: [Atlanta Journal-Const.] Disabled evacuees languish

http://www.ajc.com/metro/content/metro/0905/14katmetdisabled.html

Disabled evacuees languish
Advocates: Help for special-needs victims lacking

By Patricia Guthrie
The Atlanta Journal-Constitution
09/14/05

Dwayne Russ needs his electric wheelchair. Janelle Lytle needs her constant companion.

Both temporary residents at Roswell Nursing and Rehabilitation Center, they face additional challenges that some local advocates say aren't being met for "special-needs" survivors of Hurricane Katrina.

They need wheelchairs, scooters and walkers that were destroyed or left behind. They need medication and their government disability checks. They need to know how they will ever live independently again.

At the same time, they're still tormented by the recent past. Many people just like them, they say, were left to die.

"It became self-preservation," says Russ, 44, who is paralyzed. He was among the last medically fragile residents rescued from New Orleans' floodwaters. "That's a sad thing. If you got your health and strength, you got out."

In metro Atlanta, 79 evacuees from Louisiana ended up at more than a dozen nursing and long-term care centers, said Edna Jackson with Georgia's Office of Aging. The majority are at the Roswell home because it had 50 beds open.

A few already have been reunited with family or friends, traveling with donated frequent-flier miles.

"The memories are very fresh and painful at this point," administrator Michelle Giesken said of the evacuees now at the Roswell home. "Many just don't understand the gravity of the situation. They've asked our social workers to cancel their doctor's appointment in New Orleans, things like that."

About 10 storm survivors were transferred from Louisiana mental-health care facilities to Georgia's mental health system, said Gwen Skinner, director of the Georgia Division for Mental Health, Developmental Disabilities and Addictive Diseases.

Hundreds more physically and mentally disabled and elderly evacuees who require supportive care are probably in Georgia, advocates and state officials say.

But there's little, if any, coordination of government services, or transportation, for them, said Mark Johnson, director of advocacy at the Shepherd Center, a specialty hospital and rehabilitation center in Midtown. He said the state needs to form an outreach team for disabled
evacuees.

"Wouldn't it make sense for some disability specialist to go to nursing homes instead of expecting people in wheelchairs who don't even know what city they're in, who don't know how to get accessible transportation, to find the Red Cross and other assistance?" Johnson said. "Haven't they been through enough?"

Many evacuees are dependent on Social Security disability checks and Medicaid, the government health plan for the poor and disabled. Some of the disabled who are veterans are getting help at the Atlanta VA Medical Center.

Georgia's Department of Human Resources says numerous agencies are signing up evacuees for help at the one-stop "super service centers" for hurricane relief.

"Every social service agency is busy right now," Skinner said. The state also provides mental-health counselors to all shelters, she said.

However, Skinner added: "There is no single agency that is categorized or classified, that is serving people with special needs."

Regaining independence for the disabled and elderly who preferred, and were proud, to live alone is another challenge facing Atlanta and other cities who've accepted evacuees.

Russ had lived independently in a specially outfitted apartment and maneuvered around in an electric wheelchair. This week, he plans to join family members from New Orleans who are staying with relatives in Houston.

"If I have to learn my way around, I'll be disconnected from the support I'm used to getting. I'm concerned about that," Russ said.

He also worried about whether he would be eligible for Red Cross and Federal Emergency Management Agency emergency benefits if he leaves Georgia. He didn't know who to ask.

In the end, help came from Johnson, who drove Russ around in a wheelchair-accessible van to buy clothes and other items at Wal-Mart. He also connected Russ with an independent-living organization in Houston.

"Dwayne is just one person but he demonstrates there's lots of people out there in his same predicament who are not getting the help they need," Johnson said.

Lytle, 53, got tired of waiting for "official" help to arrive at the Roswell nursing home. She took matters into her own hands.

But it cost $80 in roundtrip taxi fare to get to the nearest Social Security Administration office last week. Suffering from the pain of bone cancer, Lytle waited in line in a wheelchair for eight hours, finally receiving her check.

The next day, Social Security showed up at the nursing home to deliver checks to remaining evacuees. Lytle said she would have waited had she known help would come to her.

Lytle's bigger concern is one facing other disabled and medically frail individuals. They're separated from human caregivers and animal companions.

She was forced to leave behind her beloved cat Mardi. The cat had been with Lytle since cancer struck 14 years ago.

"If Mardi dies, then I'm going to die," she said, looking at the two photos she saved of her cat.

Patricia Guthrie, pguthrie@ajc.com

Alison Lapper Pregnant in Trafalgar Square

Crippled Monkey at Ouch has the latest on the Marc Quinn statue Alison Lapper Pregnant, to be unveiled tomorrow in Trafalgar Square. The Guardian's interview with Lapper, "Why Shouldn't My Body Be Art?" is here.

Florence Kelley, 1859-1932

Today is the birthday of American reformer Florence Kelley (1859-1932). Besides being active in the suffrage, civil rights, and peace movements, and translating Engels, and living at Hull House, Kelley was Illinois' first chief factory inspector, appointed by the governor in 1893. In that role, she wrote reports of factory conditions, passionate reports that advocated child labor, minimum wage, and maximum day laws. The first report (1894) includes a section titled "Injurious Employments," where she describes disabled children exploited as workers, and child workers disabled by unsafe factory conditions (deafened by the noise, lungs and eyes damaged by the poor air quality, bones developed with curvatures from awkward positions, fingers and limbs lost to cutting machinery, hernias from heavy lifting, etc.). "The mutilation of children will continue to be a matter of daily occurrence," warns Kelley, without protective legislation.

Cloud Atlas

Been reading David Mitchell's Cloud Atlas (Random House 2004), a novel that was shortlisted for the Booker Prize last year. This passage (pp. 360-361) caught my eye, as a commentary on disability (on ageism particularly, but the observation works more generally). Timothy Cavendish has been tricked into surrendering himself to the care of a nursing home, and is looking for a way to escape, while longtime residents Ernie and Veronica try to discourage his solo effort as futile:

"Scouting," Ernie answered, "for his one-man escape committee."
"Oh, once you've been initiated into the Elderly, the world doesn't want you back." Veronica settled herself into a rattan chair and adjusted her hat just so. "We--by whom I mean anyone over sixty--commit two offenses just by existing. One is Lack of Velocity. We drive too slowly, walk too slowly, talk too slowly. The world will do business with dictators, perverts, and drug barons of all stripes, but being slowed down it cannot abide. Our second offence is being Everyman's memento mori. The world can only get comfy in shiny-eyed denial if we are out of sight."
...
She smiled fondly. "Just look at the people who come here during visiting hours! They need treatment for shock. Why else do they spout that 'You're only as old as you feel!' claptrap? Really, who are they hoping to fool? Not us--themselves!"
Ernie concluded, "Us elderly are the modern lepers. That's the truth of it."

"Hogging the swing"

It's hard to know exactly what's up in this ugly story, but I'm suspecting it's a junior version of the "people with placards hog all the good wide parking places," or even closer, "why should that woman in the wheelchair get to use the nice big stall in the ladies' room?" For readers unfamiliar with accessible playground equipment, the Jenn Swing is pictured here. It's true that accessible playgrounds are often the most popular playgrounds around --in Los Angeles, the 2-acre Shane's Inspiration space at Griffith Park is counted as the single most popular playground in the city, for example. They're often the newest, safest, most creative parks available. But where two ten-year-old boys can threaten the mother of a three-year-old for "hogging" a therapeutic swing (when other swings are empty), and the nannies nearby are on the boys' side, that's a park that I'd avoid for reasons other than inaccessibility. It's not enough to build these playgrounds--there has to be some community education to make them function as they should. Or, in the case of the West 70th St. park, a whole LOT of community education.