Monday, December 19, 2005
Sunday, December 18, 2005
Saturday, December 17, 2005
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
Friday, December 16, 2005
The Women's Studies Seminars at the Huntington Library present: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.)
Women, Disability, and the Arts
February 25, 2006
10am-12noon (lunch to follow)
Huntington Library, San Marino CA
*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
Thursday, December 15, 2005
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 email@example.com 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.
Wednesday, December 14, 2005
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.
Sunday, December 11, 2005
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.
Thursday, December 01, 2005
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.
Wednesday, November 30, 2005
Tuesday, November 22, 2005
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.
Monday, November 21, 2005
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 -
Tuesday, November 15, 2005
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
Saturday, November 12, 2005
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.
Wednesday, November 09, 2005
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.
Monday, November 07, 2005
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.
Saturday, November 05, 2005
This is going to be cool ... Update: Google Maps in the funnies ...
Thursday, November 03, 2005
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.
Tuesday, November 01, 2005
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.
Sunday, October 30, 2005
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).
Friday, October 28, 2005
Wednesday, October 26, 2005
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
Tuesday, October 25, 2005
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.
Sunday, October 23, 2005
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).
Saturday, October 22, 2005
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)
Tuesday, October 18, 2005
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).
Friday, October 14, 2005
Thursday, October 06, 2005
Representations of Disability and Difference in the Harry Potter UniverseGotta 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."
9:00 am - 10:45 am
Alicia Verlager (that's "Kestrell")
(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)
Monday, October 03, 2005
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.
Friday, September 30, 2005
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 firstname.lastname@example.org. 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!
Tuesday, September 27, 2005
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.
Sunday, September 25, 2005
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.
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 email@example.com or call Jamie Wenger at 212-431-2127.
Wednesday, September 21, 2005
Sunday, September 18, 2005
Friday, September 16, 2005
Wednesday, September 14, 2005
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.
From: SDS Listserv
Sent: Wednesday, September 14, 2005 10:03 AM
Subject: [Atlanta Journal-Const.] Disabled evacuees languish
Disabled evacuees languish
Advocates: Help for special-needs victims lacking
By Patricia Guthrie
The Atlanta Journal-Constitution
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
"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, firstname.lastname@example.org
Monday, September 12, 2005
Friday, September 09, 2005
"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."