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/

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.

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

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)