Review of Disability Studies

Learning Stuff We Don't Know

2011-11-30T11:32:00.005-10:00

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/

Cheater Pants

2011-06-08T14:20:00.007-10:00

Check out the P odcast 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.

2011-04-11T13:58:00.005-10:00

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

From Volume 6, Issue 4: Legacies

2011-01-05T12:46:00.007-10:00

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)

Our Latest Issue is OUT! Volume 6 Issue 3

2010-09-14T11:18:00.009-10:00

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.

The David Pfeiffer Memorial Disability Pride & Studies Library

2010-09-14T09:47:00.003-10:00

Velina Sugiyama

The Center on Disability Studies recently celebrated the dedication of the David Pfeiffer Deaf Pride Memorial Library here at the Manoa campus. Dr. Pfeiffer (1934–2003) was resident scholar at CDS and the driving force behind the International Review of Disability Studies, now in its 6th year of publication. The collection was founded on his manuscripts and books, gifted by his wife Barbara Pfeiffer.

On June 28, we celebrated his legacy by blessing and officially opening the library for use by students, faculty, and the community. In Hawaiian fashion, the doorway of the library was draped with maile lei. The premises were blessed by Kahu (Pastor) William Kaina. The traditional blessing extended to the land ('aina), the building, the collection, those who contributed materials, those who maintain them, and those who glean knowledge from them.

We remembered Dr. Pfeiffer's generous spirit and his dedication to social justice. Dr. Pfeiffer's widow Barbara, daughter Carol, and grandson Peter untied the lei and welcomed everyone in. The library was decorated with tropical ginger flowers, birds of paradise, and sweet maile--local cuttings that were colorful and delicately fragrant. After the opening, we shared a meal in Dr. Pfeiffer's honor. We hope the library will be a lasting home for his memory and scholarship.

The library space was established by CDS's talented Velina Sugiyama, who also found appropriate software and set up the lending system. Library holdings, now numbering over 600 items, were cataloged over the last year by Velina and her assistant Courtney. We are grateful for their hard work and dedication to this project. As a result, all are welcome to browse the library's holdings and borrow materials. To access the collection, either in person or virtually, contact Velina at velina@hawaii.edu or 808-956-5688.

RDS Volume 6, Issue 2 is OUT!

2010-07-02T13:22:00.007-10:00

Overlooking Sandy Beach in Oahu.

Summer is upon us and our most recent RDS issue is here!
Interesting combinations of research articles, creative writings, interviews, essays, and poetry are delighting our readers with our most recent issue. Poetic author, Manuel Llorens, provides us with insight into psychiatric experiences in Venezuela. Another poetic author, Robert M. Hensel, shares his experiences in his ongoing efforts in advocating for people with disabilities.

Authors, Mary Beth Bruder and Cristina Mogro-Wilson, provide insight in their research of attitudes depicted by faculty and students towards students with disabilities. Results of their study informs readers on this issue and the importance of the awareness of students with disabilities in postsecondary institutions.

An interview and several book reviews also enlighten readers with information about interesting people and places. There is much more to share in our latest issue. Enjoy!

Tracie

2010 Pac Rim Conference

2010-04-26T14:53:00.005-10:00

The 2010 Annual Pacific Rim Conference on Disabilities has come and gone. Yet, definitely leaving a great impression! Outstanding presentations and an enormous amount of information is still embedded in our minds. The diverse cast of presentations contributing to the culture of Disability Studies covered an array of topics from Disability rights and awareness, Universal Design for Learning, closing the gap between the digital divide and people with disabilities, and many more workshops and special events. Contributions by Kerry Thompson, Gordon Sasaki, Gordon Fuller,and Chritstine Komoroski-McCohnell, to name a few, presented on issues very relevant from the practical to the complex applications people with disabilities are involved in everyday. In her book, Christine delights us with her humor and frank comments in her memoir depicting her life story of a woman with Cerebral Palsy in which she published for an enjoyable and informative read.

Our Very Own Local Presenters at Pac Rim!

2010-04-26T14:31:00.009-10:00

Megan Conway

Steve Brown

A tremendous amount of talent and informative individuals graced our Annual Pacific Rim Conference Disability Strand held this past April in beautiful Honolulu, HI. On a local level, our very own contributions from the University of Hawaii presented on current topics. From Assistive Technoloy in postsecondary education, presented by Megan Conway and Tracie Ortiz, to Steve Brown, bringing to light the storytelling model of disability awareness.

Great things are currently happening for next year's conference! Stay tuned......

Here Ye! Here Ye! RDS Boasts Some Really Great Authors!

2010-03-04T11:51:00.006-10:00

Drawn to the article, A Research Study on Individuals with Disabilities in the Maasai Tribe of Tanzania, I felt deep emotions when thinking of the abandonment of children. Written by Fulbright Scholar, Sheryl Feinstein, from the most recent RDS publication, volume 5 issue 4, this article reveals the reality of what occurs in a place where survival is the main priority and the culture’s perspective on people with disabilities goes back to early stages of discrimination and denigration. It is a very interesting read in which I can personally relate to when it comes to abandonment. As a foster family growing up, I can remember as a little girl kids my own age coming to live with us. One person I remember was Chris. His favorite thing to do was to take long walks. Not until I got older did I realize how stress relieving walking could be. I also came to realize Chris had been abandoned too as a child. Not knowing what the foster care system meant back then, we were all Chris had at the time. On a livelier note, this issue of RDS boasts some really great international authors writing on exciting topics in Disability culture and current issues. In addition to Feinstein’s article, other articles include working from home in the Digital Age, where author and economist, Jennifer Tennant, brings light on the issue of working from home and reasonable accommodations under the Americans with Disabilities Act (ADA). The Vande Zande v. Wisconsin Department of Administration case is discussed throughout the article and challenged the validity and accommodations of working from home. Additional great contributions to this RDS issue include topics on the stigma of asexuality, written by Health Rights Lawyer, Godfrey Kanguagde, whose summary of earlier works on health rights and disability can be found here. Additionally Elizabeth DePoy and Stephen Gilson share their perspective on Legitimacy Policy. Their contribution to Diversity Studies is also revealed in their Explanatory Legitimacy Theory where they further discuss Disability and Diversity. Depoy and Gilson also shared their expertise at the 2008 Pac Rim Conference right here where RDS is published, Honolulu, Hi. Several great book reviews by various international authors also add variety to the diverse array of readings to enjoy!

Gregor Wolbring on Human Security

2009-09-22T10:21:00.002-10:00

By Gregor Wolbring

When I was asked to look for co-editors to guide an issue for RDS on human security I jumped on it!!! Really this is an area that is underserved in the disability studies discourse. Not that we do not cover it but we rarely use the term “human security.” And the discourse around human security rarely covers disabled people. When you read the RDS forum on human security you will see how underserved we are in the human security discourse. Kirk Allison and Anita Ghai are long time friends and people knowledgeable on the topic of human security and the equally important social cohesion. A society cannot function without social cohesion and disabled people cannot feel equal if they are not part of this social cohesion, if they do not belong. So I hope this issue offers you a lot of insight and entices you to push the envelope in your work and your advocacy. The articles of the issue on human security are a tool for you academically or otherwise to further the situation of disabled people and in the end society at large. So enjoy the issue and use it to the benefit of disabled people .And thanks to Kirk and Anita and all of the contributors. Cheers Gregor

Lost and Found?

2009-06-08T15:43:00.005-10:00

Lost. And Found?
By Ann Millett-Gallant

**Megan's Note: Check out Ann's latest article in RDS about the photography of Ricardo Gil at www.rds.hawaii.edu

A few years ago, my existence may best be characterized as lost. I had lost weight, lost hair, lost part of my skull, lost much muscular movement and fluidity, and lost my mobility. I had lost my memory, my history, my sense of security, and my identity. I had lost my mind.
Backing up….In May of 2007, I was vacationing in San Francisco with my friend, Anna. We were exiting a café and for some unknown reason, I shot ahead on my travel scooter and fell off the high curb of the sidewalk into the street. According to Anna, I was not drunk, sick, excessively tired, or otherwise impaired before this. It was unexplainable. I hit my head, began to bleed, and an ambulance was called.
This was all told to me later, as I have no recollection of the accident, any of the trip, or even planning it. I have blocked the whole experience out. I have blocked a lot of experiences out. Even as my memory congeals, much of my life takes place in stories and photographs, but not in the sensations of BEING there. I don’t have any flashes of being in the San Francisco hospital for 6 weeks, much of the time in a coma, and I recall very little of my time spent in a rehab hospital in Columbus, OH (where I grew up and my family lives). I only remember grueling therapy sessions there and one kind nurse, who let me have the whole container of chocolate pudding, which was used to help me swallow medications. I moved in with my mother at the end of the summer, in a place she had rented, but that I thought was her home I didn’t remember. Slowly, my strength and endurance came back. I exercised, read, wrote in a journal, drew in a sketchbook, and began to re-member – to put mind and body back together. I was content to rarely leave my sanctuary.
In a couple of months, I had surgery on my skull to reconstruct the amputation, after which, I had been told, I would improve drastically. Unfortunately, I had to endure a week in the hospital before I had the surgery, after an anesthesiologist punctured my lungs trying to put an IV in my chest. But I digress. I did feel better after my skull was intact, and in just a few weeks, I began teaching an online class, one of which I was supposed to be teaching full time that Fall. My knowledge of art history, the humanities, and how to teach came right back and, likely, got stronger. I was able to concentrate and exert authority, more and more over time. I soon moved back to my home in North Carolina and to my boyfriend, whose name I could now remember. As 2008 progressed, so did I, and I was determined to no longer put anything off. I proposed to the man I love and got married, taught full time, and began to write scholarly articles and to paint again. But I was still lost.
Backing up further….I have been physically disabled since birth, and I have incorporated disability studies as a discipline, as well as my identity as a disabled woman, into my teaching and writing. I know how to teach myself to do things and how to adapt to do anything I want to do. I am (was?) independent. I have traveled internationally, lived in 3 cities, and gotten my PhD. I was, for better or worse, fearless. Now I feel anxious taking my scooter to the grocery store. But the anxiety about injury lessens over time. The anxiety over being lost is still, and may always be, unbearable. I can’t sleep through the night, my moods oscillate from high to low without warning, and I can’t remember people, places, and personal things. I sometimes have to laugh, as, for example, I realize that not everyone looks oddly familiar because I have forgotten them, but that people just look alike. I can laugh at my loss, at times, while at other times I am consumed by feelings of emptiness and the desire to know what happened, and why.
I have learned many, countless things from my accident, about myself and the world I live in. But the main thing I have learned is that “lost” and “found” are not absolutes. They are states of being, always in flux. They collide, overlap, and intertwine. Sometimes, they make it a chore to get up in the morning. And sometimes, they produce accidental masterpieces.
I draw the term “accidental masterpiece” from a volume of essays by The New York Times art critic and columnist Michael Kimmelman (2005). The readings explore the many intersections between art and everyday life, with the theme of art as the ultimate accident. Accidents in literal and figurative forms catalyze discovery, insight, creative production, and indeed, often “accidental” (unexpected and fortuitous) masterpieces. I center one of my courses on this text, and the students have a writing assignment based on tales of loss and discovery. I was inspired to write this essay by the course. My collage predated this essay and proves to embody and personify many themes of my experiences during my accident and its legacy. The title of the collage, “Re-Membering,” refers to the ongoing process of synthesizing the past and present, as well as processes of emotional, intellectual, and corporeal metamorphosis?
The collage format embodies my accident and recovery both visually and viscerally; these visual fragments “collide, overlap, and intertwine,” as do my states of mind. I describe my memory as a random collage of stories and pictures, relating part-to-part without an overarching narrative. It is both a jumble and a medley.
Framing the canvas is a selection of get well cards, chosen from a countless stack that shows the range of people who thought of and reached out to me. Indeed, the support of friends and family got me through my ordeals. The cards strategically range from sentimental to humorous and arrived from close relatives to distant acquaintances. Visually, this frame juxtaposes elephants and kittens, a cartoon image of Dr. Phil, a crayon-drawn “You Go Girl,” designed by my 5 and 3 year old nieces, fields with soaring clouds, gilded lily pads, and magical fairies.
Within the frame are photographs of me in a coma from the San Francisco hospital, as well business cards for my doctor and prescriptions. These medical images are juxtaposed with more happy photographs, especially of my wedding, which was my symbol of moving on and celebrating my life. At the rehearsal dinner, my father presented to me a drawing of my imagined wedding, created by me as a child, a copy of which stands amongst the photographs of that reality in the collage. There are also sketches that I did from magazine pictures when I existed in “my own private world” and drawings I later created on top of printed photographs, when the idea of creating a new, original drawing seemed overwhelming. In one such example, I sketched in pink pen over a printed photograph I took of my feet at the beach. I call this photograph “There’s No Place Like the Beach,” with reference to the Wizard of Oz (because of my Dorothy-esque sparkling red shoes). The placement of this image in the collage recalls the wounded and bleeding feet in Frida Kahlo’s surrealistic self portrait What the Water Gave Me 1938, in which fragmented images from her memory, history, and fantasy assemble and float in the water surrounding her body. Frida Kahlo has always been my favorite artist - my idol of sorts - and now I find yet another connection to her because of my accident. Additional body images in my collage include “finger paintings” of my finger free hands, which I smeared on the canvas. One red hand sits on the edge of a page from my journal, in which I typed out Elizabeth Bishop’s poem “Insomnia.” My many sleepless nights now bring new meaning for me to an old favorite.
The collage is hardly a masterpiece in the conventional sense. But that is its strength. I put energy and frustration and confusion into it. It composes a lot of raw, imperfect, random, and impulsive feelings. In this way, it is therapeutic.

Reference:

Michael Kimmelman, The Accidental Masterpiece: On the Art of Life and Vice Versa. New York: Penguin Press, 2005.

You Are Being Unruly

2009-04-21T09:52:00.004-10:00

Our latest forum in RDS is titled, "Unruly Salon", and hails from a series of presentations at the University of British Columbia. The forum includes poetry, artwork, interviews, and general reflections on disability studies and "coming to pride."

The inclusion of the word "unruly" intrigues me. The word is used with pride (I believe) but it brings to my mind times when I am "unruly" because I am standing up for myself. And times when I am "unruly" because my perspective on disability diverges from the so-called mainstream of academics. And times when I am "unruly" because I am interupting by asking people to use my assistive listening device or asking them to describe something visual. The "you are being unruly" look (what my husband also terms "Troublemaker!") brings shivers to my spine, in fact it makes my spine shrink and my shoulders hunch. Until I remember I am not being unruly - I am just being me.

Perhaps it is the Obama-Rama, or just a certain time in my life (40 is just around the corner and my little child is growing up fast - no, not my inner child, my actual child), but I've had a hunger lately for readings, especially biographical, about other "unruly" people: women, Native Hawaiians, gays, African-Americans, techno-phobics, you name it. People who know what the spine shrinking thing looks like and who have had to stand up extra - tall as a result. Maybe that's what brings the pride to "unruly" - knowing about all those others who are so different from you and yet who are all the same.

Moving Forward with Disability Studies

2008-12-04T14:43:00.007-10:00

In May, 2009 we will once again host a disability studies strand at the Pacific Rim conference in Honolulu. Now if contributing to the further development of the disability studies field doesn't grab you, how about sitting on the beach in 80 degree weather with a Mai Tai? The 2008 conference was a great start to our new strand. You can read several papers that emerged from that strand by checking out our latest issue of RDS. It's a good mix of articles, covering the development of disability studies programs, sexuality, media representations, and a thought provoking keynote by Steven Gilson and Elizabeth DePoy from the University of Maine on disjuncture/juncture theory (wow!)

In 2009, we're hoping to build on the success of 2008 by encouraging innovative papers that help to futher the theoretical foundations of DS as a discipline. Not only that, but we want to continue to draw in people from all over the world so that DS is truly an international, multidimensional field of study.

So how is the Pacific Rim conference different from other disability/disability studies conferences (besides being in Paradise)? Well, for one thing, it is a "disability general" conference with a number of strands that appeal to different kinds of people - not only people with disabilities and DS folks but teachers, support service-types, parents of children with disabilities, the independent living crowd, international disability rights people - you've got it, it's broad. Being out here in the middle of the Pacific Ocean, we also tend to get a good group of attendees from the outer pacific, Asia, Australia and New Zealand.

So, enjoy the latest issue of RDS, and see you at Pac Rim 2009!

Normals and Crazies

2008-11-24T10:39:00.005-10:00

David, a student in the Disability and Diversity Certificate Program, writes:

The essay “Normals, Crazies, Insiders and Outsiders: The Relevance of Sue Estroff's Medical Anthropology to Disability Studies,” (Vol. 1 Issue 3, 2005) by Diane R. Wiener lauds the promising interdisciplinary study of medical anthropology and disability studies in relation to the amount of growth both disciplines could achieve together in relation to the continuing development and redefining in areas of discipline for people with mental health disabilities.
The essay is a summary of an in depth review of medical anthropologist Sue Estroff and her view of people that have cognitive disabilities with emphasis placed on the classification, institutionalization, rehabilitation, and socialization of people referred to as “crazy.”
Craziness, madness, or whatever the term we in society choose to label individuals with schizophrenia and other mental health disorders can and have been devastating to the community not only for the people most affected by the terms used to classify them but also by the stigma that is attached to those words. For example the medical classification of schizophrenia would in a street conversation be equated with some being called “crazy.” “He is crazy, she is crazy”, are ways people simply dust off their shoulders, so to speak, when a quick, lay term is needed. The terminology is in question for both Wiener and Estroff. The 1970's is discussed as not only a time that receives heavy criticism for the methods used to treat mental illness but is not demonized by Estroff because, per se, she is viewing the positive and negative of both sides. The 1970's, to sum up, is not as bad as it is right now.
So the question for me is how can medical anthropology and disability studies merge to become a bigger and stronger entity in the changing American view of mental illness? Well I believe it has to start at the institutional level. College curriculum needs to be created and have a test run to find if there are indeed individuals who are interested in the the merger of these two disciplines.
I think it is an excellent venture to pursue because anthropology can be made very complimentary to the individual. Like Estroff's research with life narratives of individuals that have mental illnesses we can begin the change of helping this segment of the community by including people that have mental illness into the research. It is surprising to read in the essay that people with mental illness are not nearly as included in their research, care, aid, etc. as persons with a visual, auditory, or learning disabilities.
The combination of both these fields can create a new field like Social Psychology, I think it is definitely worth investigating and more medical anthropologists should be invited into the realm of disability studies. It is after all another area that people have in all cultures and deserves as much attention now as it ever has because of the changing attitudes of people and the new change that we have decided to take as a nation since November 4th 2008.

Youth Suicide

2008-11-24T10:32:00.005-10:00

Tiffany, a student in the Disability and Diversity Certificate, writes:

Youth suicide is a major public health problem in the United States today. Youth between the ages of 15 to 24 are more likely to die from committing suicide than from all natural causes combined (National Center for Health Statistics, 2000). Suicide is the third leading cause of death in children and youths. A review of the literature suggests that students with disabilities may be at higher risk for suicidal ideation, especially students with depression, mood disorders or undiagnosed disabilities (McBride & Siegel, 1997).
Very little information is available regarding the prevalence of depression or suicide in students who receive special education services, although relationships between cognitive disabilities and depression and between diminished problem solving abilities and suicidal behavior have been noted. Medical problems have also been associated with depression and suicide. Estimates of the prevalence of depression or symptoms of depression among children and youth with learning or behavior problems tend to be higher than those for the general population (Guetzloe, 1991).
The research literature in the area of suicide reveals that there are two important interrelated factors that correlate with suicide rates: being young and being disabled. Being physically disabled has an effect on the tendency towards committing suicide. Young people who are disabled have the desire to build social relationships w/ others, but sometimes, their physical condition may be a deterring factor in creating and maintaining relationships and may create obstacles. In turn, young people with disability may not involved themselves in relationships with others or others may not want to have a relationships with them, which can lead to social isolation and thoughts of suicide (Burcu, 2007).
Guetzloe (1991) wrote that evidence of a specific psychiatric disorder and other disabilities may contribute to suicidal ideation and possibly be overlooked by educators. Educators should have the responsibility to increase awareness, prevention and intervention activities at their schools and should know how to access local resources and expertise should they encounter a student who has expressed suicidal thoughts or feelings.

References

Burcu, E. (2007). Disability and youth suicide: A focus group study of disabled university students. The Review of Disability Studies: An International Journal, 3(1), 33-48. Retrieved November 10, 2008 from www.rds.hawaii.edu/downloads.

Guetzloe, E.C. (1991). Suicide and the exceptional child (Report No. E508). Reston, VI: ERIC Clearinghouse on Disabilities and Gifted Education. (ERIC Document Reproduction Service No. ED340152)

McBride, H.E.A., & Siegel, L.S. (1997). Learning disabilities and adolescent suicide. Journal of Learning Disabilites, 30, 650-659.

National Center for Health Statistics. (2000). Deaths from 282 selected causes by 5-year age Groups, race, sex: Each state and the District of Columbia, 1995-1998. Retrieved on November 10, 2008 from http://www.cdc.gov.hchs/data/98gms.

Access to Education

2008-10-06T14:23:00.003-10:00

Here's what Tiffany, a student in the Disability and Diversity Certificate Program, had to say about Special Education:

Students with disabilities need access to education. Thirty-five years ago, the educational rights of students with disabilities were dramatically and firmly established in law and practice. Prior to that time, many students were refused enrollment or special education services. Only since a federal court case in 1972 and the passage of federal legislation in 1975, have all states been mandated to provide a free, appropriate public education to all students with disabilities. In 1975, the Individuals with Disabilities Education Act (IDEA) were passed. Under the IDEA, states and local districts were given a mandate to provide specialized educational programs for students with special needs, and students and parents were given a mechanism for enforcement of their rights (Weber, 2007).

Special education is a large and expensive system currently serving one in ten students in public school. Many students are placed in special education because of the inability of regular education to accommodate their needs. Research has shown that regular education, if properly modified, can meet the needs of many more students with disabilities, but doing so is challenging (Hocutt, 1996). Of students found to be eligible for special services under the IDEA, only a small percentage (about 5%) are now served in locations entirely separated from the regular school building. Of the remaining students, about one-third spend most of their day in a regular classroom, one-third in the regular school building but in separate classroom and one-third spend roughly half the day in each setting (Hocutt, 1996).

When we talk about education for children with disabilities, the topic of inclusion often comes up. Inclusion remains a controversial concept in education because it relates to educational and social values, as well as to our sense of individual worth (Weber, 2007). Not everyone is excited about bringing students with disabilities into the mainstream classroom setting. Tornillo (1994), president of the Florida Education Association United, is concerned that inclusion, as it all too frequently is being implemented, leaves classroom teachers without the resources, training, and other supports necessary to teach students with disabilities in their classrooms. Consequently, these students are not getting appropriate, specialized attention and care, and the regular students’ education is disrupted constantly. For inclusion to work, educational practices must be child-centered. This means that teachers must discover where each of their students are academically, socially and culturally to determine how best to facilitate learning. Indeed, child-centered teachers view their role more as being facilitators of learning rather than simply transmitters of knowledge (Hocutt, 1996).

Lieberman (1992) points out that many advocates (primarily parents) for those with learning disabilities also have significant concerns about the wholesale move toward inclusion. Their concerns stem from the fact that they have had to fight long and hard for appropriate services and programs for their children. They recognize that students with learning disabilities do not progress academically without individualized attention to their educational needs. These services have evolved primarily through a specialized teacher working with these students individually or in small groups, usually in a resource room setting. Students with disabilities need an education that is appropriate to their needs. It is not enough to just include students with disabilities in a regular classroom if their disabilities prevent them from obtaining education. Appropriateness must be individually determined. Differences in disabilities, severity, and individual strengths means that the federal government and states cannot legislate specific services for students by category alone.

References

Hocutt, A.M. (1996). Effectiveness of special education: Is placement the critical factor? Special Education for Students with Disabilities, 6 (1), 78-102. Retrieved September 20, 2008 from www.futureofchildren.org.

Lieberman, L. M. (1992). Preserving special education for those who need it. In W. Stainback, & S. Stainback (Eds.), Controversial issues confronting special education: Divergent perspectives. Boston: Allyn and Bacon.

Tornillo, P. (1994). A lightweight fad bad for our schools? Orlando Sentinel.

Weber, M.C. (2007). Inclusive education in the united states and internationally: Challenges and response. The Review of Disability Studies: An International Journal, 3(1&2), 19-33. Retrieved September 20, 2008 from http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss01.pdf

Parent Awareness

2008-10-06T14:16:00.003-10:00

Duggal, a student in the Disability and Diversity Studies Certificate Program writes:

Lack of awareness about disability can lead to distress for many parents who have a child with a disability. In the twenty first century, one way to exercise equality of rights and bring about peace could be by creating awareness and educating people about disabilities. Guardians and parents of children with disabilities play an important role in safeguarding their child’s development.

Gregg Roger, an English Professor from Penn State University, learned about is soon to come baby through prenatal diagnosis. Although Roger and his wife were unsure about how they would raise their daughter, who was diagnosed with Down syndrome, they managed to pull it off. Not only did they learn to raise their daughter and take care of her needs but also found happiness for themselves as a family. Education and awareness about disability came about through support groups and other sources. However, the first and foremost step was acceptance. They accepted their child and did not fear for the challenges they might face in raising her.

Joanne Hill, in the United Kingdom, killed her daughter, Naomi. The reason given for why she killed Naomi, although uncertain, was that Naomi had mild cerebral palsy. Joanne had a history of depression and mental illness. Again, raising awareness and providing support to society through education and awareness campaigns can help change and often save lives.

In the RDS article “Working and Caring for Children with Chronic Illness/Disability: Stories of Disconnection, Cruelty and Clayton’s Support” the parents of children with disabilities feel disconnected from family, friends, neighbors and community members. Parents cited in the article state that understanding and support from others about their child’s disability is a significant barrier for their families.

Sources that can help parents learn about Disability Culture, Education and Awareness:

http://www.patriciaebauer.com/2007/11/28/more-emails-two-prenatal-diagnosis-of-down-syndrome/

http://www.america.gov/st/health-english/2008/April/20080527003343SrenoD5.163211e-02.html

http://www.miusa.org/newsitems/matreq

Disability Studies Student Blogfest

2008-10-06T14:13:00.002-10:00

Students in our Disability and Diversity Studies Certificate Program are trying their hand at blogging. So check out their postings over the next few posts and let them know what you think by posting comments!

On Being Invisible

2008-09-11T13:59:00.003-10:00

The lead article of Volume 4, Issue 3 of RDS talks about "virtually invisible women" - women with disabilities who are largely absent from mainstream psychological research. This is shocking. You would think that the combination of Woman + Disability + Psychological Issue would be fertile ground for researchers, but apparently not. People with disabilities are noticeably absent from research in just about any field of study you can think of. Its as if disability has no more significance then having brown hair. Yet when it comes to employing someone with a disability, or educating them, or talking to them, disability suddenly becomes their most important characteristic.

Unfortunately, being invisible is not just a metaphor. Just this week in my Introduction to Disability and Diversity Class we were discussing the protests surrounding implementation section 504 of the Rehab Act in the 1970's, specifically the takeover of the Federal Building in San Francisco. We asked, "Why do people with disabilities have to make such a big fuss when they want something?" Because they are invisible. If you don't make a "big fuss", no one will see you.

Post a comment and let us know what you think about the under-representation of people with disabilities in "mainstream" research. Should we be seen as distinct? How can we convince researchers to see us as a group worth considering?

Music Forum

2008-06-23T14:37:00.002-10:00

This in from Alex Lubet:

I'm extremely proud to have had the privilege of editing /To Dance beneath the Diamond Sky with One Hand/, along with my Israeli colleague Na'ama Sheffi. We have a terrific group of contributors writing on a multitude of musical subjects. My own contribution is a brief essay/review of a performance by guitar great and genius inventor Les Paul, who turned 93 Monday, June 9, and is still playing a weekly gig at the Iridium in New York. In addition to both being arm-injured guitarists (and I'm just starting to develop the arthritis he's played with for years), Paul and I share that birthday. Happy Birthday, Les, and I hope you all enjoy the article and Volume Two of this forum.

Stories

2008-03-06T10:22:00.001-10:00

By Steve Brown

I like stories. I like reading stories, telling stories, and encouraging others to tell stories. This is one of the reasons I first got involved with disability culture. The first workshop I did related to disability culture was titled "Speakers of Movement" and encouraged both panelists and audience members to talk about stories. The first poem I consciously wrote about disability culture was called, "Tell Your Story." I've edited two forums in the first three volumes of RDS. The first, in the first RDS issue was called "Disability Culture – A Decade of Change," and included a multitude of stories. One of the reasons I think it is so vital for us to tell our stories is our unfortunate high mortality rate. David Pfeiffer, our colleague, co-editor, renowned disability studies scholar, and one of the inspirations for beginning RDS, died before we could publish the first issue. Tanis Doe, one of the contributors to that forum, and a wonderful artist, advocate and scholar, passed on not long afterward. So it is probably no surprise that the other forum I edited, in the last issue of Volume 2 contained a forum was called, "Sharing Stories, Autobiography and Disability." It included articles and poetry from three countries. That issue also saw our first published article in another language, French. We just posted the first of two issues about disability and music. This is another way for us to tell our stories and my contribution in one of these issues is about artists with disabilities (mostly) talking about life experiences in an art form that connects with lots of people.

RDS Forums

2008-02-25T15:19:00.001-10:00

Note from Alex Lubet on RDS Forums

Greetings from Minnesota! As one of the more senior members of the RDS editorial team, I'm excited to be making my blog debut.

2008 begins with a two-issue forum entitled To Dance Beneath the Diamond Sky with One Hand… devoted to disability and music. Some of the highlights are a study of a remarkable inclusive music program in Scotland by Peggy Duesenberry and Raymond MacDonald, a discussion of professional musicians dealing with breast cancer and recovery by Sarah Schmalenberger, Isaac Stein's touching, personal essay on Neil Young, a person with disabilities, father of sons with disabilities, and prominent disability activist, and Ray Pence's remarkable chronicle of soul-funk legend Curtis Mayfield's years as an artist with quadriplegia. For this forum, I was joined as co-editor by my dear friend Na'ama Sheffi, Chair of the School of Communication, Sapir Academic College, Israel.

Prior to assuming my current position as Associate Editor for Forums, where I recruit and assist guest editors to work on theme issues of RDS, I served as guest co-editor (with my U of M colleague Christopher Johnstone) of the forum Parting the Waters: Disability and Deliverance in the Wake of Disaster. Inspired by Hurricane Katrina and the great Asian/African tsunami, contributions also included essays on such topics as the Montreal ice storm, the Israel-Palestine conflict, 9/11, and the AIDS in Africa. Contributors' fields included English literature, landscape architecture, social work, international education, and music. This was a particularly timely, provocative, and popular forum.
We've got several more forums in press or in progress that we think will be similarly interesting.

I'd just as soon not spoil the surprise of what's to come in the way of RDS forums, except to say that the sky's the limit. Please consider submitting a proposal for a cfp yourself. All topics will be considered, with preference given to editorial teams with at least one partner from beyond the US. We are, after all, An International Journal.

Finally, I want to share a news flash not (yet!) related to RDS. One of my all-time favorite music students at the U of M, Monthian Buntan, recently head of his native Thailand's Association of the Blind, has just been elected a Senator in that country. How cool is that?

About the RDS Blogspot

2008-02-20T12:44:00.000-10:00

The Review of Disability Studies an International Journal: Blogspot

Welcome to our new RDS Blogspot! It's an opportunity to talk about the latest international Disability Studies topics and get feedback from our readers about articles and hot topics in DS.

The Review of Disability Studies: An International Journal (RDS) was founded in 2003 by the late David Pfeiffer and the Center on Disability Studies at the University of Hawaii. Our purpose was to address the need for an internationally-focused academic journal in the field of Disability Studies. The journal contains research articles, essays, and bibliographies relating to the culture of disability and people with disabilities. It also publishes forums on disability topics brought together by forum editors of international stature. Poetry, short stories, creative essays, photographs, and art work related to disability are also welcome. The journal is published four times a year, and each issue runs approximately 50 pages.

We would like to invite you and people from around the world to participate in our new BLOG, subscribe to the journal, advertise with us, serve as anonymous peer reviewers, and contribute manuscripts. The Journal is open to all perspectives, approaches, views, and paradigms relevant to the study and experience of disability.

Special Stuff

2008-02-20T12:07:00.000-10:00

My co-editor, Steve Brown, gets pretty riled up when anyone uses the word "special." It doesn't matter that the word "special" has been around far longer than "special education" or the media's love of "special features" about "special people." Don't you dare propose a "special forum" or talk about how you have "special feelings" or order the "weekly special." Unfortunately, for people with disabilities, special things have lost their meaning because of over-use by the special people specialists. A couple of years ago we published a, yes, special forum on, yes, Special Education Meets Disability Studies. To view the issue click here . Check out the two articles by Johnson and Kellner in another issue as well. These are preliminary explorations of how disability studies might inform special education research and practice. Since the issue was published, I 've done a lot more scholarly reading in this area and am convinced that disability studies scholars have much to contribute to improving educational practices for kids with disabilities. What we need now is to conduct more empirical research about how to turn disability studies theory into classroom practice.