Click above for more information about the journal itself and to subscribe.

Wednesday, May 30, 2012

DIS: Divine Comedy


Dis (Divine Comedy)
From Wikipedia, the free encyclopedia
In Dante Alighieri's The Divine Comedy, the City of Dis (in Italian, la città ch'ha nome Dite, "the city whose name is Dis")[1] encompasses the sixth through the ninth circles of Hell.[2] The most serious sins are punished here, in lower Hell. Dis is extremely hot, and contains areas more closely resembling the common modern conception of Hell than the upper levels.



  Lower Hell, inside the walls of Dis, in an illustration by Stradanus. There is a drop from the sixth circle to the three rings of the seventh circle, then again to the ten rings of the eighth circle, and, at the bottom, to the icy ninth circle.

Dis Editorial
Megan A. Conway
RDS Managing Editor

You would have thought it was enough that I have blindness on the eyes and deafness on the ears. Not to mention the creaking in my joints – what a pain. But now I’ve got “Dis”.

It seems that Dis is always coming up. I am on my way to work, riding the number 6 bus and praying that I get off at the right stop, because Dis Van, called the “Handivan” in Honolulu I kid you not, takes me half way around the island just to go eight blocks. I flash Dis card at the driver, who tells me that I no longer get a free ride the way I did a year ago because the government is cracking down on Dis population. But I get half off the “normal” fare, so Dis counts for something.

I’m at work and the first thing that pops up on my screen is Dis news flash, “Funding cut for Dis program but Dis is nothing to worry about.” I can’t believe Dis, but Dis day is just starting. The next email is about Dis memo that I have to submit to our fiscal department so that I don’t have to pay the difference in airfare between the flight I’ve booked for Dis business trip on Hawaiian Airlines, and the “lowest available fare” that happens to be $13.56 cheaper. I booked the Hawaiian Airlines flight because it’s the only transpacific airline where the bulkhead actually allows room for Dis Dog and my legs (ask me later about Dis time I stood up for the full 5 hour trip between San Francisco and Honolulu). So Dis only stands to reason. But when I explained Dis to fiscal I got glazed eyes until I specifically mentioned Dis as a “special accommodation” and then I got happy looks and lots of emails about multiple memos.

I have Dis meeting in the afternoon. I’ve learned Dis lesson for the day, so I blast off a reminder email regarding the “special accommodation request” that I made several days ago for the meeting because of the blindness on the eyes and deafness on the ears.  Only before I did not call it a “special accommodation request” but I was assured that Dis is no problem. When I arrive at the meeting Dis request has been completely ignored and they say, “Why didn’t you tell us about Dis?” I say, “I’ve been making Dis request for Dis organization for the past 3, 795 meetings that I’ve attended. How can you be surprised by Dis?” And they say, “Dis is not our fault. Dis is your fault.”

So I get mad and I go home. I can’t take Dis any more. What is Dis, anyway? I calm myself. Dis is real. Dis is you, but Dis is not you. Dis is mostly everybody else.


Dis is my day. Dis is my life. 

Image reads "puppies - they're just like DIS!"


Monday, April 30, 2012

Into the Light


Editorial: Into the Light

Megan A. Conway, RDS Managing Editor 
Download the entire Volume 8, Issue 1 of the Review of Disability Studies at www.rds.hawaii.edu
Download a podcast of this editorial at www.rds.hawaii.edu/connect/podcasts

Photo from the Miracle Worker of Annie restraining Helen.


Photo of Annie spelling into Helen's hand.



My seven-year-old daughter had to do an oral poster presentation on a famous American. She chose Helen Keller, a choice guided in large part by me, always anxious to counter the social perspectives of disability as weakness and everyday things as miraculous already bombarding impressionable young minds in the first grade.

There is a girl with a disability I will call "Mary" in my daughter's class. Well, Mary is sort of in my daughter's class, which is to say Mary sometimes appears for lunchtime and special activities such as birthdays or field trips. When Mary does come to the classroom, she sits passively at her almost-always-empty desk with "Mary" printed at the top in large letters. Her name proclaims the truth of what is not apparent - that Mary is indeed a member of Room One. Mary is always accompanied by, or rather tethered to, a classroom aide. The aide's sole purpose seems to be to keep Mary from participating.

Case in point. I brought my hearing dog into the classroom to give my annual talk about "working dogs help people with disabilities and by the way people with disabilities are just like you." As expected, Mary was there, and as expected, she was sitting in the back of the room where she was least likely to cause a disturbance, or rather most likely to cause a disturbance because she couldn't hear what I was saying or see the pictures in the brightly illustrated children's book I was reading about "My Buddy the Service Dog."

Cover of book "My Buddy" picturing a boy in a wheelchair with Golden Retriever by his side.

 After the story and a handful of eager questions from my audience such as, "What happens when Buddy has to go to the bathroom?" I sat with my dog while the children came up one by one to pet him. At last it was Mary's turn, and the aide manhandled her to the front of the room while Mary, not surprisingly given that her hand was being given as an offering to a large furry animal with sharp white teeth, was resisting. "No, no," wailed Mary, pulling away as the aide stood behind her, blocking her exit and shoving her towards me. "Hey," I said, "Let her go. She doesn't have to pet the dog. Step away aide! Mary can come on her own if she wants to."

The aide was in such shock she actually did what I said. She stepped back, ready to pounce on Mary if necessary, but releasing her arm from the death grip.

Mary got the most wonderful expression on her face. She stood there, surrounded by empty space, free, for a split second, to decide. And of course, as I had expected, she decided to come forward. She reached out her arm and she patted my dog, and then she gave me a great big smile, full of light, full of understanding. And then she was sucked back into the grip of the person meant to enable her.

But I was talking of Helen Keller, and my daughter's poster presentation. The assignment was to paste photos of the famous person on a large sheet of paper, along with captions describing why they were important. We had prepared for this assignment by reading from a biography of Helen and, since the biography was a little dry for a seven-year-old, watching a DVD of "The Miracle Worker."

"What did you learn about Helen from watching the movie?" I prompted.
"She was deaf-blind."
"Okay, that's right, and what else?"
"She slapped people."
"What?"
"She slapped people. She knocked her teacher's tooth out. It was so funny!"

My first reaction was, "You can't put that in your report, that she slapped people! Surely there is something nicer than that you can say about Helen Keller!" So we wrote that Helen traveled a lot, and she was friends with Alexander Graham Bell, and she met Presidents, and she showed the world that deaf-blind people can do anything. I was incensed that Helen was always portrayed as a Savage who was rescued from darkness by the Savior, Annie Sullivan. Isn't that just the way of society, I fumed, idolizing someone because they became normal against the odds?

And that made me rethink my reaction to, "Helen Keller slapped people." What was slapping people but exerting her own sense of self, her right to want a doll, and to want it now. She was expressing her resistance against doing what she was told, doing what she did not understand. If Helen slapped Annie, it was because she was self-determined, because she had a sense of her own person as distinct from others and of herself as exerting control over her world. In bringing Helen "into the light" the essence of that self-determination was lost, at the expense of being able to express herself in a way that was acceptable to others.

One of the great conversations, if you will, about Helen Keller was her relationship with Annie. Because Helen relied on Annie for just about everything, the question arose of "who was Helen and who was Annie?" What of what Helen said was from Helen, and what was from Annie? My personal opinion is "what does it matter?" Together, they were two remarkable women. Apart from each other they were remarkable too. That was Helen the author, socialist, traveler, actor, dancer, speaker, thinker. But was she self-determined? Did she ever slap someone after she figured out that "water" was the stuff coming out of the well in the backyard? Not likely, because the mission of Annie, of Helen's parents, of the Perkins School for the Blind, of society, and of Helen herself, was for Helen to behave as if she were normal. That behavior involved giving herself over to the unseen hand of decorum. What part did "no" play in that equation?

Later that night, after my daughter was asleep, I took out the poster and wrote, "Helen slapped people," in small print, perhaps where the teacher would not see it, at the bottom of the page.

Clip art of a man being slapped by a woman's hand.




Wednesday, November 30, 2011

Learning Stuff We Don't Know


Learning Stuff We Don’t Know, by Megan Conway
Check out the Podcast of this post at http://www.rds.hawaii.edu/connect/podcasts/


With all due humility, it’s hard for me to learn that I don’t know something, especially something about disability. My husband says that’s because I graduated from Berkeley. Needless to say, he didn’t. But a recent experience organizing a panel of experts for my online introductory Disability and Diversity Studies course gave me a good look at my own ignorance.
It started out as a really great idea to put together a panel of people with different kinds of disabilities, from different cultural backgrounds, to talk to my class about multiculturalism. The students have read about multiculturalism. I’ve talked about multiculturalism. But I thought it would be good if they could hear it straight from the source. The article in this issue by Hulgin, O’Connor, Fitch, and Gutsell on Disability Studies Pedagogy points out the value of these sorts of experiences for students who are being asked to critically examine new ideas.
Also, I am of the opinion that “experts”, many of whom do not actually have disabilities, often get paid far too much to offer their expert advice about disability, backed by lengthy citations and references, when a two minute conversation with a person with a disability would help people figure everything out. If this sounds strange coming from the Editor of an academic journal, so be it. I just wanted to recognize the guy who provides the two-minute conversation.
I began making inquiries of various colleagues and colleagues of colleagues, looking for that perfect mix of crippiness and culturalness that would truly impress upon my impressionable students the nuances, richness, and complexities of a multicultural society. In my case, I got a good dose of the complexities.
There was the diversity of communication needs of my panelists. Now being deaf-blind myself, I am no stranger to communication diversity and in fact consider myself to be quite the little “expert” when it comes to matters of communication. I had one panelist who was deaf-blind, but who has some vision and hearing, so I thought Real Time Captioning would be a great accommodation. Another panelist was Deaf. Hey, great, kill two birds with one stone. In fact, I figured we could all type back and forth, instead of talking, to give the students a sense of what it’s like to experience a lecture without sound. So I was shocked when the Deaf panelist told me, “Sorry but my English is not that great and I would really prefer to use a sign language interpreter.” And then another panelist said, “I would love to type everything, but I have limited use of my hands.”
So I arranged for sign language interpretation for the Deaf panelist. And I arranged for a student to assist the other panelist with navigating the keyboard. Then the deaf-blind guy said he couldn’t see the captions.
Luckily the deaf-blind guy had a friend who could assist him. And it turns out the captioning was needed after all because another one of the panelists spoke English as a Second Language. Unfortunately for me, Dr. Cultural Sensitivity, his name and his country of origin have a lot of Y’s and V’s and Z’s all next to each other, so I introduced him as something like “Yes-is-kee Ze-sis-kee from Ku-ku-staskee”. Then I introduced the deaf-blind guy as being “of the Native American People” and he said, “I’m not of any group of people. I just am. And by the way, I don’t think of myself as being ‘deaf-blind’.”
In the end I felt really good about meeting the needs of all of my panelists. And they were all terrific speakers. And the class got a lot out of their presentations.
But inside—where lurks that little spark of pride for being the Disabled-Woman-Who-Preaches-Disabled-People-as-the-Experts—there is also a little flicker of shame. Although I tell every one of my students that the key to changing our views about disability and diversity is to admit that what we think we know may not be the truth, I thought I knew everything. And then I had to learn stuff I didn’t know. And that was hard.

You can view a recording of the cultural diversity webinar and other disability studies webinars by going to http://www.cds.hawaii.edu/main/certificates/webinars/

Wednesday, June 8, 2011

Cheater Pants



Check out the Podcast of the Editorial Below!

RDS Editorial

Cheater Pants

By Megan A. Conway

I have a “Friend,” who shall remain nameless, who is forever on the Hawaii State List of Persons Who Have Previously Attempted to Cheat the System. A few years ago this Friend was applying for a renewed Disabled Persons Placard (hereafter referred to as DPP in the spirit of true academic devotion) at a Satellite City Hall (SCH). Several months before, Friend had diligently responded to the notice requiring that all persons possessing a current DPP must re-apply and include a new physician’s Verification of Eligibility Form (now known as VEF). This was being done to ensure that all valid DPPs were truly valid and not just fake-valid. Friend went to her physician and her insurance company (don’t tell them) paid Dr. Doctor to sign his name next to a statement that yes, indeed, Friend was still as permanently disabled as she had been on the day she was born. Friend then shoved the VEF for the DPP in a drawer somewhere and forgot about it.

Until the day that Friend realized her placard was about to expire and she would be hoofing it along with the rest of mortal mankind down endless blocks of city street unless she renewed her DPP. So she hunted down the VEF, now quite battered, and went on down to Satellite City Hall (SCH).

Now, I am assuming that in most States City Hall is populated by people who make their profession out of following the rules. But let me assure you that in Hawaii we have civil servants like no other. Following the rules is like taking your lunch break, it will happen no matter what. After standing in the wrong line at the SCH clutching her VEF for a DPP for 15 minutes and being directed to a new line that she had been standing in for 25 minutes, Friend was idly looking over her VEF for the DPP when she noticed, to her horror, that in very small print at the bottom it read, “VEF only valid for 3 months after signature.” Friend looked at the date beside the signature of Dr. Doctor. It was 5 months old. Friend paled. She imagined actually extracting herself from the line at the SCH, actually leaving the SCH and walking back to the car. Calling to make another appointment with Dr. Doctor, likely in two weeks when her DPP would have expired, getting to the SCH and standing all over again in the wrong line for 15 minutes before she stood in the right line (presumably, who knew?) for another half an hour. Friend imagined all of this and she did what any self respecting person who did not actually grow up in Hawaii would do. She took a pen from her purse, and very subtly, or so she thought, Friend changed the date beside the signature.

You can imagine what happened when Friend reached the friendly Servant of SCH. It took about half a second for the Servant to raise her eyebrows, glower at Friend and say briskly, “Did you change this date?” “No, oh no,” stammered Friend, “I wouldn’t do something like that.” “Well, let’s see,” smirked Servant, lifting up the receiver of the phone by her side and dialing the number of Dr. Doctor printed on the VEF.

Friend (told me later that she) felt like she was in a horror movie that was in slow motion. Servant spoke smugly to a receptionist on the other end of the line, who, being a former SCH Servant herself most likely, confirmed what Friend’s SCH Servant had expected. The document had been signed five…months…previously.

Servant hung up the phone. She typed something into her computer. Actually, we know what she typed into her computer. She typed, “This person is a Cheater Pants. In future regard this person with the ultimate amount of distain and suspicion. In summary, this person DOES NOT FOLLOW THE RULES.” We know this because a month later when Friend made it back to a SCH (on the other side of the island), the Servant there made a similar phone call to verify the accuracy of the information presented on the VEF for the DPP. When she handed Friend the new DPP, it was with obvious regret. She knew Cheater Pants was at it again, but she just couldn’t prove it.

I hope you have enjoyed this little vignette of how the State of Hawaii foiled yet another attempt by Persons with Disabilities (PWD) to Cheat the System. You can be sure that my “Friend” will never try such a stunt again. But one has to ask, since when does your disability become less permanent over a period of 2 months? How many PWD are actually trying to get away with renewing their DPP with forged VEF at SCH? Why does the University of Hawaii have mirrors on the ceiling of the testing cubicles where SWD (students with disabilities) take their proctored exams? Well, that’s another story, and a more titillating one, I’m sure.



Monday, April 11, 2011

Aloha! This is an exciting Spring at RDS, as we are joining the 21st Century with the establishment of a new RDS Facebook Page AND quarterly Editor's Picks Podcasts . Our first Podcast features a reading from Volume 7, Issue 1, of "Psychosocial Adjustment of Women with Work-related Disabilities in Rural China" authored by Karen Y. L. Lo-Hui, Lilian Luo & Xiaoshan Yang and read by Lulu Liu (Photo at left) , a student from China who is in our Disability and Diversity Studies Program. I like this article because it explores the relationship between cultural attitudes about gender and disability, and adaptation to acquired disability.

Write the authors, "
In the process of exploring the psychosocial and vocational rehabilitation needs of people with work injury disability, it was clear that a portion of these workers were coming from rural China and experienced a work injury while they worked in urban cities. In supporting the occupational and social rehabilitation of these injured migrant workers, the authors, as the rehabilitation practitioners, started to recognize a gender difference related to their psychosocial adjustment. The awareness of this gender difference stimulated this discussion of the psychosocial adjustment of women with work-related disabilities who originated from rural China."

So please, sit back and enjoy the ride as we explore new horizons here at the Review of Disability Studies!

Megan Conway, Managing Editor

Wednesday, January 5, 2011

From Volume 6, Issue 4: Legacies

Legacies: Burning Books A-Foot in Heaven?

By Steven E. Brown

In the early 1990s, on a panel at a Society for Disability Studies annual meeting and trying to model in some way the AIDS quilt, I shared a few names and a couple of stories of friends who had passed on. Afterwards, people shared some of their own names and stories. That led to the writing of “Martyrs,” a poem that begins:
The following have drawn their last breath,
They've been courted by death
Many gave their lives to the cause
Their passing should give us pause
Many gave all their hearts had to give
So the rest of us might live (Brown, lines 1-7)

Interspersed between stanzas are names. In 2010, too many names have been added to this poem, which now lists more than 100 people. Others continue to send names and some of these, along with “Martyrs” can be found at http://www.instituteondisabilityculture.org/.
The Review of Disability Studies (RDS) began amidst life passages when Founding Editor, David Pfeiffer, passed on suddenly prior to publication of the journal’s first issue. In Volume III, Issue 4, we published an “In Memoriam” to RDS Distinguished Fellows Frank Bowe and Rolf Bergfors. In the current issue, we pay tribute to one of the giants of disability studies and acknowledge others who have impacted disability studies, Disability Culture, and our lives.



Cartoon above by John Callahan

One morning in early August 2010, I received an email asking if I had heard about Paul Longmore’s passing. I had not and I had difficulty accepting the news without confirmation. Beginning a web search I could find no indication of Paul’s death. But when signing onto Facebook I read rumors, which Paul’s sister later confirmed. Paul had passed on the previous night.
Paul left a lasting legacy, including understanding and writing about how disability issues affected history (The New Disability History) and how he, as a scholar-activist, also impacted history (Why I Burned My Book). Not long before his death, Paul learned, and enthusiastically shared, the news that he had been awarded a prestigious Switzer Fellowship to write an American history college textbook about disability. Like many of us in our 50s and 60s (he was 64 at the time of his passing), he came to disability rights activities because of discrimination. These activities led him to disability studies. A scholar of American history, Paul’s book on George Washington—the book he burned in a successful protest against the Social Security Administration’s recording royalties as income which threatened his benefits—remains highly regarded.

At the time of his passing, Paul was Director of San Francisco State University’s Institute on Disability as well as a professor of American history. Losing a friend is always difficult; losing a friend and colleague who is also a giant in his field is even harder. At one of Paul’s final public appearances—a Disability Pride event celebrating the 20th anniversary of the signing of the Americans with Disabilities Act in San Jose, California, in July 2010—Paul said:
“Great leaders do not create great movements. Great movements give rise to great leaders.... No movement can exist without in this case millions of ordinary men and women asserting themselves to demand dignity and their rights. So that’s what our movement is all about. That’s our past. That’s our present. That’s our future” (Feingold, 2010).

Paul will be missed, but his was not the only huge loss of 2010. Cartoonist, humorist, musician, and writer John Callahan also moved on during this year. Author of numerous cartoons depicting
disability with an eye toward moving people’s boundaries, Callahan’s autobiography, Don’t Worry: He Won’t Get Far on Foot (1990) remains a classic look into the life of becoming disabled and adapting to it. I never met Callahan, but his work impacted my Disability Culture perspectives and I read everything of his I could find. In the early days of presenting about Disability Culture I often passed his cartoons around the room and waited for a myriad of reactions, from laughter to “Oh, that’s gross.” Callahan constantly challenged our assumptions.
Too many others have left the planet this year to describe each in detail, but also missed will be disability rights activist and one of the founders of the oldest, ongoing Disability Pride Parades (in Chicago), Barb Bechdol; playwright and editor, Paul Kahn; writer and artist, Robert Mauro; photographer Tom Lee; musician and elder statesman William Loughborough; and activist Barbara Knowlen.

Two deaths—more personal and local—of this year include Tom Carter, a colleague from El Paso, who directed an independent living center there at the same time I directed one in Norman, Oklahoma and Mitch Stuart in Honolulu. Mitch was a person with a developmental disability who served on some Center on Disability Studies committees. He was also a recruiter for the Self-Advocacy Advisory Council. A perfect job for Mitch, whose booming voice and enthusiasm were hallmarks of his presence.
After writing and submitting this piece, we learned of the passing of another giant of the disability rights movement, Paul Miller, a former RDS Distinguished Fellow, who relinquished that title when he went to work in the Obama administration. Paul also worked in the Clinton administration, where he was instrumental in hiring persons with disabilities to work in Washington, D. C. An attorney and an advocate, Paul lived in Seattle, Washington, where he was Henry M. Jackson Professor of Law at the University of Washington and director of its disability studies program.
Each of these individuals in some way bettered others and the cause of disability rights. While they have moved on, we who remain have plenty left to do. “Martyrs” concludes:
These tales we tell have begun
Songs and poems and stories in all their glories
These tales we tell have begun
I don't believe an ending will ever come. (lines 86-90)

Tuesday, September 14, 2010

Our Latest Issue is OUT! Volume 6 Issue 3






Our latest issue of The Review of Disability Studies, an International Journal, volume 6, issue 3, is now posted online from www.rds.hawaii.edu . The online version is free.

The latest issue features a forum
"Theorizing Culture and Disability: Interdisciplinary Dialogues", guest edited by our U.K. colleagues Dan Goodley, Rebecca Mallett, Rebecca Lawthom, Lucy Burke, and David Bolt. I think you will find that this issue is jam packed with an interesting array of diverse contributions from a discussion of Comedy in British television, to visual representations from the perspective of authors in the United States and the Czech Republic.

Authors, such as Clare Barker, Brett Smith, and Alison Wilde reveal interesting issues and topics from Interdisciplinary Dialogues: Disability and Postcolonial StudiesComedic Immunity to Dialogism, Monologism, and Boundaries: Some Possibilities for Disability Studies and Interdisciplinary Research, as well as the article including the Performance and the Re-Presentation of Disability and Impairment. Additionally, Kateřina Kolářová’s Performing the Pain: Opening the (Crip) Body for (Queer) Pleasures promises an interesting read.

Elizabeth DePoy, and Stephen Gilson have once again graced RDS with their contributions in this latest issue with their Disability by Design article. They are also scheduled to appear at our upcoming Pacific Rim International Conference, April 18 &19, 2011 at the Honolulu, Hi: Hawai`i

Convention Center.