RIP Judi Chamberlin (1944-2010)

[visual description: photograph of Judi Chamberlin, holding a book titled "From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves" from the National Council on Disability.]

"Lots of times you read an article about disabilities and have someone with cerebral palsy speaking about cerebral palsy or somebody blind talking about being blind, and then you have a family member talking about what it's like to be mentally ill and the interviewer seem to think that's the same thing, but it's not."

Psychiatric survivor activist Judi Chamberlin has died, according to a note posted on her blog, which documented her months with hospice care.

Allison Carey, On the Margins of Citizenship

I want to take this opportunity to get the word out about very good friend, Disability Studies colleague and DS,TU reader, Allison Carey's first book, On the Margins of Citizenship, released today by Temple University Press. For those of you who live in the area, we are hosting a reception and lecture by Allison in celebration. Several DS,TU contributors enjoyed the opportunity to work alongside Allison at Temple University's Institute on Disabilities in the early 1990s before she moved on to the Department of Sociology and Anthropology at Shippensburg University. We would love to have you join us this one-of-a-kind event: lecture, book signing and reception. The talk, as well as the book, examines the discourses of rights and citizenship for people with intellectual disabilities as well as the sociopolitical factors that too often diminish the effectiveness of their ability in securing choice and self-determination.
When: Wednesday, September 9, from 12 noon to 1:30 pm
Where: 1810 Liacouras Walk, in the ground floor conference room, in the North Philadelphia main campus of Temple University. Maps and Directions.
RSVP: on our Disability Studies Meetup site so we will know to welcome you properly.
UPDATE: The typescipt and audio recording of Allison Carey's lecture have been posted on the Institute on Disabilities' website - enjoy!

Ugly Laws reviewed in Cleveland Plain Dealer

Earlier Penny posted here on Sue Schweik's recent publication and book tour. It is fascinating to see how local newspapers are covering The Ugly Laws. Sue shared with her facebook friends a link to the recent review in the Cleveland Plain Dealer. This is a model of how academic work can open up otherwise occluded historical phenomena.

May 8: Douglas A. Martin (1947-2003)

May 8 was the birthday of Douglas A. Martin, a leader of the disability rights movement in Los Angeles in the early 1970s, active in Californians for Strong Access, and co-founder and director of the Westside Center for Independent Living in 1975. In 1971, he was the first grad student with a "significant disability" to win a UCLA Chancellor's Fellowship--and the next year he was UCLA's first disabled teaching assistant. He earned a PhD in urban studies at UCLA. Martin co-founded the Chancellor's Advisory Committee on Disability in 1983, and was a Special Assistant to the Chancellor to coordinate ADA and 504 compliance on campus. On the national level, he lobbied tirelessly to remove work penalties from Social Security provisions. Martin died way too soon, in 2003, at age 55.

There's a really good, long, interesting oral history interview with Douglas Martin, conducted in 2002 by Sharon Bonney, available in transcript at the Bancroft Library website. (There are also audio and video clips. This might be limited access, I'm not sure.) One section that particularly caught my eye was about his three years in an Omaha hospital after contracting polio at age 5; television was new then, and a great distraction for a ward full of children in iron lungs. But the Army-McCarthy hearings were running on the only channel for much of the day! Martin remembers that planting a seed:

It just really gave me a sense of, there's a whole big wide world out there going on, and you know this political world and all this stuff. It was interesting. Didn't have that much to do with it at that point except take it all in. But later I guess, it might have been part of the reason I was interested in politics, and getting involved in Washington, and kind of having knowledge. There was so much information and detail about the system, and how it worked and how it didn't work, in those days. Some of the best and some of the worst in people in politics came out. It was fascinating, and I guess I got interested, I saw it to be a place where you could make a difference. I kind of filed it away in the back of my mind. I kind of remember that as possibly motivating, as some basis for later interest in trying to bring about social change, something more positive. (here)

I don't watch TV if I can help it when I'm in the hospital. When my kid is hospitalized, it's usually in a shared room, and there's little choice. I remember being in a quad isolation room with him during the 1998 Clinton impeachment hearings; the mother across the room was shouting at the commentators a lot. Think I also saw an Olympics opening festivities in a PICU once? I know another mother whose son was born in July 1969--so she and the other women giving birth that week were among the Americans who did not see the Neil Armstrong moon landing live.

What have you seen--or not seen--on TV during hospital stays?

Convention on the Rights of Persons with Disabilities Entered Into Force

Rehab International Press Release; April 3, 2008
Ecuador has ratified the UN Convention on the Rights of Persons with Disabilities, raising the total number of ratifications to 20 and thereby triggering the treaty’s entry into force. The CRPD is the first human rights treaty of the 21st century and prohibits discrimination against persons with disabilities in all areas of life, and includes specific provisions related to rehabilitation, habilitation, education, employment, health and access to information, public facilities and services.

Disability History and Awareness Month

For readers living in North Carolina, today is the first day of Disability History and Awareness Month, as declared by your legislatures and signed by your governors. In West Virginia, October is Disability Awareness Month, and the third week of October is Disability History Week. Other states (Idaho, Iowa, Florida, Connecticut) are in the process of considering similar legislation. These designations came about through the work of young disability rights activists, who are learning how government works by meeting with officials, writing letters, and drafting such declarations. A designated week or month may not add any ramps to your neighborhood or stop any hate crimes, but it's evidence that a new generation of kids are getting trained to do the tedious stuff that will get a ramp built, a law changed, a law made, a law enforced...

Mr. Shardlow's Opus (and Mr. Corey's too)

Kudos to the teachers at Frank H. Harrison Middle School in Yarmouth, Maine, who have set up a Wiki for their eighth-grade students to produce webpages about civil rights--including disability rights. The idea is nifty--a wiki is a great tool for collaboration, and (after registering) parents and community members are invited to join in gathering and organizing information about the history, law, and cultural aspects of various civil rights movements. In conjunction with the online aspect of their study, students are also creating exhibits for a "Civil Rights Museum," which will be open to the public on the evening of June 5. If you can't make it to the exhibit (kind of a long commute for me, from Southern California to Maine), at least tour the disability rights movement pages that the Harrison students are creating:

• Pat, Elizabeth, and Smythe from Rod Corey's class have a page called Rights of the Disabled, which currently features short profiles of Ed Roberts, John Tyler, Jeff Moyer, Gabriela Brimmer, Dorothea Dix, Emmanuel Ofosu Yeboah; as well as sections about laws and historical eras.
• Catie, Read, and Alicia from Bill Shardlow's class have a page called Laws Affecting Disabled Americans--section titles include "Disability Discrimination," "Disabled and Sports," "Quotes," and "Quick Facts."

Pat, Elizabeth, Smythe, Catie, Read, and Alicia, great work! You're learning stuff about disability that most adults don't understand yet, and you're learning it in the context of civil rights--that's terrific. Mr. Corey, Mr. Shardlow, and the other Harrison Middle School eighth-grade teachers are doing fine work. I've taught middle school, and I'm really impressed with this project. Maybe you can drop them a note if you agree.

In Search of....the first TAB

No, not that kind of TAB (illustration at left is a can of the softdrink called TaB). I'm on a search for the first use of the term "Temporarily Able-Bodied (TAB)". Love it or hate it (and there are plenty in both camps), it's a term you'll frequently encounter in disability culture these days. I've seen vague references to its emergence from the American disability rights movement, and those seem correct, but I want specifics: who used it first? When? When was it first written down, or recorded? Here are the bread crumbs I've found so far; I'm hoping someone out there in the blogosphere can fill in the century-wide gap between the 1870s and the 1970s.

ABLE-BODIED: The Oxford English Dictionary has cites for the use of the term "able-bodied" back to 1622 in England and North America. In the mid-1800s, it's definitely being used in official contexts, in opposition to disability, in reforms that were meant to separate deserving (disabled) paupers from the "able-bodied" pauper (who doesn't deserve public funds, by this reasoning, because he should instead work for his living).

TAPs? The earliest appearance of the phrase "temporarily able-bodied" that I've been able to find in the academic journal archive JSTOR is a 1979 article in the Stanford Law Review. In footnote #107 in the article "Anti-Institutionalization: The Promise of the Pennhurst Case," authors David Ferleger and Penelope A. Boyd explain:

"TAP is a term disabled people use to refer to so-called 'normal' people as a reminder of the vicissitudes of fate. 'TAP' is an acronym for 'Temporarily Able-bodied Person.'"

Was TAP also in use in the 1970s, or are the authors mishearing TAB? If TAP was a competing term, what tipped the balance to TAB? (Both Ferleger and Boyd are now practicing lawyers specializing in disability and mental health issues, in the Philadelphia area--perhaps my esteemed colleagues at Temple know of them?)

GEORGE WILL?!?! A 1980s appearance is mostly interesting for its source: conservative political columnist George Will spoke approvingly about the term in a 1985 lecture at the Rehabilitation Institute of Chicago. In a 1986 Hastings Center Report article for the based on that lecture, Will says,

"We who are not physically handicapped are the 'temporarily able-bodied.' I like that because it reminds us that affliction and decline are coming to us all; they are incidental to our humanity. To be human is always to be more or less needy; it is to be increasingly needy the longer we live."

Will's version also illustrates one major problem with the term: it can be taken as an invitation to 'there but for the grace of God' thinking, an invitation that leaves unchallenged the construction of disability as a personal condition of decline, neediness, and affliction.

JUDY HEUMANN: In a 1989 article for International Rehabilitation Review, Ann Rae credits Judy Heumann with introducing the term 'temporarily able-bodied' in England. So the implication is that it's an American term, commonplace enough among American activists in the 1980s to be propagated abroad.

So where does this leave me? Still in the vague "sometime in the 1970s" zone. But I suspect somebody knows the answer to this. Or an answer, anyway. Anybody?

Only the tip of the iceberg

In scanning the Sunday morning menu of news programs, the non-hygienic and deplorable conditions at the Walter Reed Medical Facility was the topic du jour. As one would expect, there was rhetoric both trying to explain actions taken to remedy the problem, as well as, aggressive statements minimizing the issue.

The journalist Dana Priest of the Washington Post, who conducted a thorough four month investigation of the facility, explained that she had spoken with the various parties involved. Initially she had been contacted by a person who knew someone who was very frustrated with the poor living conditions at this renowned military health facility. She soon discovered that it was not one or even ten people who were appalled by these conditions but a significant number of patients' families and others who had access to the interior of this outpatient infirmary.

Now this story has opened a Pandora's Box from which different voices are resounding and into which the public is peering.

I have utmost respect for those women and men who are returning from Iraq, with and without medical impairments. What disturbs me is that the same deplorable conditions and substandard care and services are every day occurrences in the lives of many people with disabilities, as well as the elderly, who are living in nursing homes and long-term care facilities. The United States government is quick to covet credit as the world's most developed and advanced country yet under its very eyes, we see physical, emotional, and sexual abuse in these facilities.

There have been sporadic investigative reports through the years of the conditions in nursing homes but there is never a resonating unified public outcry for surveillance and for humane corrective action to be enforced.

We all respect and honor those who have been injured by a historical misadventure, the Iraq war, of which they had no part in creating. We the public should not express any less shock or demand any less purposeful and immediate action against the living conditions that demoralize people with disabilities and the elderly who live in facilities in situations that would never be tolerated by these in power if they were themselves to residence of the same facilities.

The difficult road of recovering soldiers at the Walter Reed Medical Center

Today's Sunday Washington Post features a front page story on the administrative delays and outpatient challenges that war-wounded and war-weary soldiers are facing at the United States Army's top medical facility in Washington, D.C. The editors of DS,TU wish to express our gratitude to the investigative reporters Dana Priest and Anne Hull [email contacts] who spent four months conducting their undercover investigation of the out-patient world at Walter Reed. This is a major story that is getting heavy play in the blogosphere [see commentary of Pastor Dan]. Please share your thoughts with your congressional representatives; let them know that you care about the disabled veteran of conflict in Afghanistan and Iraq. We need to bear witness to and express our compassion for these men and women.

Share this shortened link, http://tinyurl.com/32sfbd

Update: The fallout from this published expose has been swift. Following the resignation of the general in charge of the Walter Reed Medical Center, Maj. Gen. George W. Weightman, on Thursday, the news arrived Friday, March 02, 2007 that Secretary of the Army, Francis J. Harvey, had also been asked to resign by Defense Secretary Robert M. Gates.

Humanitarian?

We (my family and I) went up to Hollywood to walk/roll with the Not Dead Yet forces at the 2005 Oscars. I really didn't anticipate an encore this year.

But Eastwood is getting the MPAA's first Jack Valenti Humanitarian Award at this year's festivities? Um....hmmm. In 2005, Ragged Edge assembled a page full of links about why he's no humanitarian on disability issues. Or, for the long version, get a copy of Mary Johnson's Make Them Go Away: Clint Eastwood, Christopher Reeve, and the Case against Disability Rights (Advocado Press, cover shown at left).

So,"decency and goodness of spirit," huh? Even aside from Million Dollar Baby and his ADA violations, this is still Dirty Harry, isn't it?

Civil Rights online archive--where's disability rights?

There's a cool new website, The Seattle Civil Rights and Labor History Project, now fully operational, according to a recent announcement on the H-Net. I recently read Susan Schwartzenberg's Becoming Citizens (UW Press 2005), about the Seattle-area families that pushed for educational rights for disabled children in Washington State--a right they won, with a law that became a model for the IDEA. Great story, important story, it must be mentioned on a Seattle civil rights history project site, right?

Um... no.

Well, maybe there are.... no. Searching the words "disabled," "disability," and "disabilities" gives no hits; neither does "handicap" (always worth checking in historical archives), "blind," or "deaf," or "wheelchair" or "accessible" or "ramp".... do you get the idea? I know there have to be other disability rights stories in Seattle history--where are they? Then again, it's the city where an alternative weekly columnist recently forgot that disability rights are civil rights.

Here's a start: There are photos from a 20o4 ADAPT action in Seattle at Harvey Finkle's site; and also at the site for the Center for Disability Rights in Rochester (I found the above photo of Seattle ADAPT protesters at the latter site).

November 10: Disability Rights Symposium at Penn

[An announcement posted on H-Disability; links and image added.--plr]

"The Haves and the Have Nots: An Assessment of Disability in the Middle East"
on Friday, November 10, at 9:30am, featuring:

Liat Ben Moshe, Syracuse University: "Disability at War in Israel: A Cautionary Tale on Activism and Resistance"

Sumi Colligan, Massachusetts College of Liberal Arts: "Navigating Paternalistic State and Neo-Liberal Discourses and Practices: The Complexities of Agency for Disability Rights Activists in Israel"

Hila Rimon Greenspan: "The Rise of the Disability Rights Movement in Israel"

Firoozeh Kashani-Sabet, University of Pennsylvania: "The Good, the Bad, and the Ugly: A Historical Overview of Disability in Modern Iran"

Professor Robert Vitalis of the University of Pennsylvania will serve as the discussant.

This symposium will take place in College Hall, Room 205. SPACE IS LIMITED!
For information and to RSVP contact Firoozeh Kashani-Sabet.

Co-sponsored by The Middle East Center and the Barbara Bates Center for the Study of the History of Nursing at Penn's School of Nursing

Gulp....it's official

Got the UCLA Extension's fall catalog yesterday--and there's me, listed on page 128, teaching Disability and Public Policy, a new course for Extension, starting September 28. (The course description isn't exactly as I'd write it--so I really hope nobody calling himself a "legal expert" enrolls!) Despite the gulp in the title above, I'm excited; it's been fun to plan the readings and guest speakers. But I'll still feel like it's all make-believe until minimum enrollment is met and the first session commences.

Oh, and there are required texts--not sure why that doesn't show on the listing. I'm setting Jacqueline Vaughn Switzer, Disabled Rights: American Disability Policy and the Fight for Equality (Georgetown University Press 2003), and Mary Johnson and Barrett Shaw, eds., To Ride the Public's Buses: The Fight that Built a Movement (Advocado Press 2001), plus an assembled reader.

I love a parade....

On Saturday, the third annual Disability Pride Parade will wind through downtown Chicago, with the theme Disabled and Proud 2006: Celebrating Disability Arts and Culture. The grand marshal is actor Robert David Hall from television's CSI (pictured at left), who is also national chairman of the Performers with Disabilities Caucus of the Screen Actors' Guild. Among the bloggers in attendance, watch for Croneway (anyone else?).

You can't actually march in the parade if your contingent didn't register before July 5, but you can still watch and cheer on the parade, offer rides to/from the route, or attend some of the ancillary events (an open-mic/poetry slam on Friday night, and a film festival on Saturday night). Interested but not in the Chicago area? The organizers are also welcoming tax-deductible donations to help defray some of the costs of the parade.

What's the occasion? July 26 marks the 16th anniversary of the signing of the Americans with Disabilities Act. There will also be picnics in New England, a walk-roll-or-run in Florida, an anniversary celebration on Capitol Hill, a town-hall meeting at the National Press Club... and maybe something near you, too.