The Disability Experience in America.
Our list of editors and contact information is at the end of this document.
Volume 21, number 5, September, 2001
Contents:
Cover: Helen Keller and the FBI by Fred Pelka
Lost Disability Classics: SHow I became a Socialist" by Helen Keller, and "The world I live in" by Helen Keller
Letters
D. R. Nation
FEATURES
Mean Streets by Ed Eames
Distance Learning: boon or bane? by Art Blaser
Death, and Lives Remembered
Book reviews: The new disability history, Deaf American literature, poems by Constance Merritt, and a play about Randolph Bourne
Three poems by Constance Merritt
The Media Edge: A reply to Jerry by Ross Sweat
On edge: Disabled Lives: A Commentary by David Pfeiffer
Editorial:
Whose ADA is it, anyway?
Ella Williams, a former paint inspector at a Toyota plant in Kentucky, says she developed carpal tunnel syndrome from doing repetitive tasks at the plant. Toyota says it offered Williams a different job, but Williams turned it down, saying it included manual labor that she was not able to do. Williams sued under the Americans with Disabilities Act, and the U.S. Supreme Court will take up her case this fall.
The Bush Justice Dept. filed a brief in June siding with Toyota; some national rights groups told the Washington Post in an Aug. 7 story that this brings into question how much the Bush administration really supports the ADA after all. Despite the feel-good posturing of the Administration over its "New Freedom Initiative" and the unveiling of its wheelchair-height podium this spring, we say the jury's still out.
Chai Feldblum, a professor at the Georgetown University Law Center, suggested to The Post that perhaps the Bush administration was "trying to pander in some way to the business community." Why does this not surprise us?
Like the Sutton, Murphy and Kirkinburg cases decided by the Court two years ago this summer, Ella Williams' lawsuit is a case about who the ADA was intended for. Certainly not "regular" people who "just have" carpal tunnel syndrome! That's what the pro-Toyota forces say.
When Sutton and its companion cases were in the news in 1999, some in the disability rights movement were quoted in national media making the point that people like Kimberly Sutton who couldn't see without glasses, and UPS mechanic Vaughn Murphy who took medication for high blood pressure, were not really "people with disabilities" like seriously disabled people were.
This will likely happen as well with Ella Williams' case. Millions of workers have repetitive stress injuries. Hardly anyone views them as "disabled." Not like "real disabled people." Not part of the disability rights movement.
The more people can be removed from the protection of the ADA, the happier the anti-rights forces will be.
The only real voices who can speak up for them are ours.
Our first 'Disability Rag Reader' covers the bus battle of the '80s
This fall the Advocado Press brings out the first of our new series of "Disability Rag Readers" -- reports from the front lines of our movement's 1980s growing years. We're particularly excited about this first one -- To Ride the Public's Buses: The Fight that Built A Movement -- because it features our friends in ADAPT. The book reports on the bus battles across the nation as told in the pages of the Disability Rag from 1983 to 1990, the year the ADA became law, requiring access to public transit as part of its Title II.
Going through old Rags for the articles we would use, I was particularly struck by the comment ADAPT's Mike Auberger made back in the early '80s: "The issue may be lifts on buses," he told me. "But what we are doing is building a movement."
With a Foreword by ADAPT Incitement editor and longtime organizer Stephanie Thomas, and photos by Tom Olin, the book promises to be an instant classic of movement history. For a limited time, we're offering a special 15 percent discount off the $17.95 cover price to Ragged Edge readers. That offer is only good through Oct. 25, so hurry with your orders! Many of you will want to order lots of copies; to inquire about even lower prices on bulk orders, contact the Press by email at office@advocadopress.org (or by fax at 502/899-9562). To Ride the Public's Buses will make great fundraisers to resell at national actions and meetings.
Letters
Send your letters to us by email at editor@raggededgemagazine.com
or by regular mail to P.O. Box 145, Louisville, KY 40201.
Or fax us your letter: 502/899-9562.
Write, tape, do whatever it takes to get these stories passed on
I was really looking forward the article by Jim Cherry about his Section 504 lawsuit ("Cherry v. Mathews: 25 years and counting," July) because, despite having looked for details for years, all I knew about it was a paragraph or two saying it had happened.
Over the years I've had conversations with people -- particularly DSQ's David Pfeiffer -- about how Section 504 got implemented. A couple of years ago when ILRU commissioned me to write an Independent Living history, David told me about some advocacy for 504 with the 1976 Carter campaign that I'd not heard about until that time. Aside from Richard Scotch's book, From Goodwill To Civil Rights, the only thing I've ever seen in print from someone who was there at the time was a letter to the The Disability Rag by John Hessler disagreeing with some of Scotch's observations.
And that's why I found this article pretty frustrating. I wanted to know more about how Cherry's lawsuit fit in with other things that were going on. Although he made it clear he didn't feel it did, I wonder: Was he as ignorant of what else was going on as he makes out the rest of then-advocacy movement to be about his lawsuit? Were there people around that neither camp knew about? And now we know that Ragged Edge editor Mary Johnson had at least a finger in the lawsuit. Where are your observations of that time, Mary? Have they ever been printed?
This is not mere venting. Everyone I know of who was in the San Francisco HEW building at the 1977 Section 504 demonstrations -- and I've interviewed or talked with people from Ed Roberts and Judy Heumann to personal attendants -- says that disability culture began for them in that demonstration. I know of one person who moved to Berkeley from Nebraska because of hearing about the demonstrations. My wife, Lillian, who lived in the Bay Area at the time, became involved in the dis. rights biz because of those news stories and learning from them about the Center for Independent Living in Berkeley.
It is important, I think, to have those of you who know about these times (it's not me -- I wasn't around then, believe it or not) write this stuff down for the future. When historians come along to write up this stuff (and they will), it will likely be after we're all passed away. All that they'll have to go on is the records they find.
One of the best will be all the Rag incarnations and the other magazines we produced. Let's get our stories in them. These are not only "lost classics" (which I love -- thanks for doing them!) -- they are also the never-written-down classic stories.
Please, please, please!! write, tape, do whatever it takes to get these stories passed on! However they are remembered will become what the media will eventually use to describe how we got to wherever we get to 50 to 100 years from now. And if you don't think that's important, just that remember the Civil Rights Act, the one that didn't include us, is almost 40 years old!
Steven E. Brown
Co-Founder, Institute on
Disability Culture
http://www.dimenet.com/disculture
Las Cruces, NM
Yours truly Mary Johnson really did play only a tiny role in the Section 504 lawsuit -- but promises to think about writing about that time in the near future. For those of you hungry for stories of the movement's early days, The Advocado Press's new book, "To Ride the Public's Buses" is a must-read. Read the second item in our editorial for advance ordering information. -- ed.
Discrimination is, after all, discrimination
Thank you, Dave Reynolds, for writing "The New Death Penalty Bans" (July) and for your conclusion that "Discrimination is, after all, discrimination."
I have been struggling with how to explain this issue to other people for some time, and, without resorting to oversimplifications, you have captured the problem clearly and concisely -- and the reasons the interests of people sentenced to death and people who are not caught up in the justice system clash in this instance.
Offering small advantages that are dependent on a large system of disadvantage encourages disabled people to squabble over whether the long-term gains we seek in struggling for equality are worth the short-term losses we will suffer in rejecting all kinds of discrimination. It encourages us to celebrate tiny silver linings and ignore the huge clouds that make them necessary. It encourages us to accept the status quo rather than to fight for justice.
And so long as we struggle as individuals, as long as the cases of Mr. Penry, Mr. Cruz, and others in similar circumstances are considered without addressing the impact they will have on such people as Darlene (see "Lesson Learned" in the same issue) the Olmstead plaintiffs, Mr. Chenoweth (see "Adult Protective Services Versus Jerry Chenoweth" in the same issue), and the many people involved in the self-advocacy movements (and vice versa), we will be divided and ruled.
The lawyers in the death-penalty cases have to consider only the impact on their clients, or they wouldn't be doing their jobs. The rest of us must struggle with the larger picture. That is our job.
Cal Montgomery
Chicago
Thanks for validating bad attitude
I keep getting enthusiastic emails from advocates and do-gooders about the "New Freedom Initiative ("Dubya's New Freedom Initiative," May).
I feel like such a bitch when I say, "But they are only giving money to able-bodied people who already have money and jobs. People with disabilities only get services and loans!"
Thanks, Marta Russell, for validating my bad attitude.
Carole Krezman
Berkeley, CA
Reject Jerry's advice
"Pity? If you don't want to be pitied because you're a cripple in a wheelchair, stay in ya house." So said Jerry Lewis on CBS News Sunday Morning, He has since apologized for the remark. Mr. Lewis not only was so rude as to tell a whole group people they should stay home but he also had the nerve to suggest he knew the sentiment the rest of society held for said group was that of pity.
Do you think people donate money to charity out of a sense of pity? Some undoubtedly do, but most do not. Rather, they are moved to give from compassion and generosity. I believe that to be true; at least I'd like to think it is so when people are not otherwise moved to feelings of pity by the calculated acts of Jerry Lewis and people like him.
Would that Mr. Lewis stopped making disabled individuals into objects of pity on an annual basis. Would that he recognized it's not necessary do so to raise money. Don't hold your breath.
If you believe he is wrong, reject his advice: If you don't want to be pitied because you're "a cripple in a wheelchair" get out of your house. And whatever you do, don't let anyone convince you that a person is an object of pity -- not ever.
Richard Estes
For more on Jerry Lewis's "pity" remark, go to our Media Edge Dept.
News from the Disability Rights Nation
Keeping promise to ADAPT
President Bush issues Executive Order to implement Olmstead
True to his promise to ADAPT protesters in May, President George W. Bush in June issued an Executive Order implementing the 1999 Supreme Court Olmstead decision. The Order directs the Dept. of Education to coordinate Administration efforts in the Departments of Health and Human Services, Labor, Education, Justice, Housing and Urban Development and the Social Security Administration to assist states to expand alternatives to institutions. In 1999, the U.S. Supreme Court ruled in the case of Olmstead v. L.C. & E.W. that states could not discriminate against people with disabilities by "inappropriately" placing them in institutions rather than providing services in the community.
The Executive Order would not have happened without the "direct action" of ADAPT members, said ADAPT organizer Bob Kafka.
The federal agencies have until mid-October to review their programs and to report on how they will remove barriers to community living, says Kafka. "Our aggressive advocacy must continue."
Advocates are being urged to offer recommendations to HHS's Lance Leggitt (Lance.Leggitt@hhs.gov or at 202/690-6133) who is coordinating the Executive Order effort.
Our recommendation should specifically detail what we want these agencies to do," says ADAPT.
ADAPT issued its own set of recommendations July 9; they include development of "a Medicaid service called 'Transition Services' that would reimburse the things necessary to transition from a nursing home or other institution to a community setting" -- things, says ADAPT, like the first month's rent, the utility deposit and basic home furnishings -- and allowing "direct family members to be paid for services provided under the Medicaid State plan." Currently family members can't be paid by Medicaid for providing personal assistance services. ADAPT also calls for eliminating Medicare's "homebound" requirement. A complete list of ADAPT's recommendations can be found online at http://www.raggededgemagazine.com/ extra/adaptrecs070901.htm
"Nightmare of Laguna Honda"
National ADAPT action
Oct 20-25
San Francisco
With its 1,200 "beds," San Francisco's Laguna Honda is the largest nursing home in California. It's also publicly funded.
A campaign to pass a $300-million bond package to rebuild the aging public institution began in the late 1990s, supported by many progressives and the labor unions of those who work in the institution. Disability activists have been fighting to close Laguna Honda; community opposition has been strong (see "Activists sue San Francisco over Laguna Honda," D.R. Nation, Sept. 2000, and "Stuck at the Nursing Home Door," Ragged Edge, Jan./Feb. 2000).
From Oct 20 to 25, San Francisco will be the site of ADAPT's fall "National Action," dubbed "Nightmare of Laguna Honda": "Yes, in the 'fertile crescent' of disability rights and independent living sits the world's biggest example of the failed policy of this country that warehouses people in 30-bed wards and denies them access to community services," says an ADAPT flyer.
Activists nationwide plan to descend on the city for a week of nonviolent direct action to remind San Francisco of the Supreme Court Olmstead decision and the Americans with Disabilities Act's mandate that people be integrated into the community. For information contact ADAPT at 303/733-9324 and ask for Tisha or email adapt@ adapt.org.
Funding for institution stalls Olmstead progress in Illinois
by Gary Arnold
Despite heavy opposition from Illinois' disability community, Governor George Ryan recently approved funding for the construction of a four-building, 64-bed institution for people with disabilities. The proposed 20-acre campus will be a Marklund facility. Marklund, a for-profit company set up to run institutions, already has institutions for people with disabilities in, among other spots, Glendale Heights, Bloomingdale and Winfield, Illinois. Construction for this latest facility is scheduled to begin this summer in Geneva, a suburb west of Chicago.
The Illinois lawmakers' decision to spend up to $4 million on a new closed-campus facility clearly contradicts the intent of the U.S. Supreme Court's 1999 Olmstead decision, in which the Court ruled that people with disabilities have a right to live in the most integrated setting appropriate to their needs. The federal government has mandated each state to create a system through which institutionalized people with disabilities can transition from institutions into the community.
Not only does the decision to fund Marklund create yet another situation in which people with disabilities will be segregated from the rest of the community, but it also siphons money away from programs which are intended to support independent living.
The Illinois disability community pushed for three bills in the Illinois state legislature which would have significantly increased the wages of personal assistants, but none of these bills made it past the House Rules committee (instead, lawmakers awarded a dollar-an-hour raise for assistants working in institutions for the developmentally disabled, another decision supporting institutional care instead of community services). Several other bills, one which would have required the Illinois Department of Human Services to develop an Olmstead plan as mandated, another which would have required agencies to provide transition services to people in institutions and notify people of their right to community-based services, and another which would have funded family support services, also stalled in committee.
Gary Arnold is the Public Relations Coordinator at Access Living, Chicago's Center for Independent Living.
Editor's note: A longer version of this news report can be found online at http://www.raggededgemagazine.com/extra/marklundfight0701.htm
Activists take over governor's office to protest lack of Olmstead funds
by Dave Reynolds,
Inclusion Daily Express
BALTIMORE, MARYLAND -- Disability rights advocates from Maryland ADAPT, TASH and other groups took over a conference room at Governor Parris N. Glendening's office in late July and held it for more than six hours.
The group had been meeting with the governor's chief of staff Alvin C. Collins and other staff members to discuss the lack of funds to implement the state's Olmstead plan to provide services for people with disabilities in their communities instead of nursing homes and institutions.
The advocates were not satisfied when the meeting ended around noon, and decided the next meeting had to be with the governor, who is also the chairman of the National Governors' Association.
When they got no commitment that the governor would meet with them, the group refused to leave.
"We're taxpayers," Liz Obermayer, one of the protesters, was quoted as saying in Tuesday's Baltimore Sun. "We should have the right to meet with the governor just like anyone else."
The group held the conference room until around 6:00 that night.
The National Conference of State Legislatures put together a report on the states' responses to the Olmstead ruling. Reports on the status of those plans is available by clicking on "Appendix B" on the left side of the page: http://www.ncsl. org/programs/health/forum/ olmsreport.htm
Effort grows to abolish Medicare 'homebound' rule
David Jayne is the catalyst for a growing national grassroots effort to amend Medicare's "homebound" policy. A website at http://www. amendhomeboundpolicy. homestead.com/background. html gives details.
Jayne, who has amyotropic lateral sclerosis (ALS; sometimes called "Lou Gehrig's Disease") came to the attention of disability activists nationwide following a series of newspaper stories last fall. When Atlanta Journal Constitution reporter Bill Torpy profiled Jayne and his outreach to others with ALS, reporting that Jayne left his home to give speeches, Healthfield Home Health, who had been sending an attendant to Jayne's home to help him get out of bed and take a shower, notified Jayne that the company was cutting off his services immediately -- because he went out and so was longer considered "homebound."
Jayne soon began a petition drive to change the federal Medicare rules.
Current Medicare rules insist that those receiving Medicare "home care" benefits stay "virtually bound to their homes in order retain such benefits," says the mission statement of the newly formed National Coalition to Amend the Medicare Homebound Restriction for Severely Disabled Americans, or NCAHB. They call the current policy "an anachronism," and are pushing Congress to "implement an alternative to the current policy which recognizes that persons with significant chronic illnesses must not spend their lives homebound."
Update:
Jerry Chenoweth
Jerry Chenoweth ("Jerry Chenoweth Vs. Adult Protective Services," July) is now living independently in an apartment that he shares with a friend. Charges were dropped against the four activists arrested for demonstrating at Adams County Social Services. According to protester Julie Reiskin, director of the Colorado Cross-Disability Coalition, the action helped bring Chenoweth's situation to a head, and ultimately to resolve it. After the arrests, says Reiskin, "all of a sudden their 'genuine concern' about his welfare went away and they sent us a note agreeing to stop harassing him."
In place of the County, the court appointed CCDC organizer Debbie Lane to be Chenoweth's new guardian. "Jerry doesn't need a guardian any more than I do," says Lane. "I'm only keeping the guardianship so that if someone does try to do this crap again, I already have the authority to put a stop to it."
Aided by CCDC, Chenoweth filed an Olmstead complaint with the state of Colorado. Reiskin said she received "a bullshit response." She hopes to find an attorney to sue Adams County and Poplar Grove Care Center, the nursing home where Chenoweth lived until his escape earlier this year, for false imprisonment, Medicaid fraud and neglect.
-- Laura Hershey
"Extreme Court Blues"
is the 55-minute video of last spring's "Leave Out" action of the newly-formed National Disabled Students Union chapter at the University of Illinois at Chicago. The video captures the march and a teach-in featuring speeches by NDSU organizer Sarah Triano, disability scholars David Mitchell and Carol Gill, and playwright Susan Nussbaum; former Dept. of Ed. Asst. Sec. and longtime disability activist Judy Heumann; National Council on Disability's Marca Bristo and many others. Available from the PhD Disability Studies Program/UIC Disabled Students Union, UIC, 1640 Roosevelt Rd., IIDD Bldg Rm 207, Chicago IL 60608. Cost: $129/institutions; $55/individuals; $25/low-income rate. Make checks payable to UIC. For more information, email strian1@uic.edu
SC Olmstead Task Force says people want to live at home
by Dave Reynolds,
Inclusion Daily Express
COLUMBIA, SC, Aug. 2, 2001 -- "Disabled Say They Prefer Life At Home," was the headline from Columbia's newspaper, The State. The story reported that South Carolina's Home and Community Based Services Task Force has completed a draft report on the current status of community services in the state, along with recommendations for filling gaps in such services. The Task Force is the state's response to the 1999 U.S. Supreme Court decision in Olmstead versus L.C. & E.W., which ruled that institutionalizing people with disabilities "unnecessarily" was a form of discrimination under the ADA. The draft report is available online at http://www.scddc.state. sc.us/olmstead.htm
Apartments developer sued for discrimination
by Dave Reynolds,
Inclusion Daily Express
The U.S. Department of Justice sued Taigen & Sons, Inc., and DDI Architecture & Planning, Co., developers of the Centennial Trail Apartments in late July for violations of the Fair Housing Act and the ADA, charging that the complex's 32 ground-floor apartments are inaccessible: interior doors, patio doors and bathrooms are too small for wheelchairs, environmental controls are too high.
Under the Fair Housing Act, multi-unit apartment complexes and condominiums built after March 1991 must include doors wide enough to accommodate wheelchairs; bathroom walls reinforced for installing grab bars; electrical outlets, light switches and thermostats within reach of people in wheelchairs and bathrooms and kitchens large enough for people who use wheelchairs to move about in them.
Chicago Transit Authority settles suit over access to bus system
The Chicago Transit Authority will spend $15 million over 5 years to improve access to its buses, say terms of the mid-July class action settlement in a lawsuit brought February 2000 by Access Living of Metropolitan Chicago and nine individuals with disabilities. The suit charged the Chicago Transit Authority of violating the Americans with Disabilities Act and the Rehabilitation Act. Terms of the settlement were announced July 17.
Attorneys for the plaintiffs say the CTA first tried to have the suit dismissed outright, claiming that it couldn't be sued under the ADA. When a judge denied that motion, the transit authority then claimed to the court that plaintiffs "had produced no evidence of discrimination and that CTA was not responsible for the misconduct of its employees."
The U.S. Dept. of Justice entered the case this spring, filing a friend-of-the-court brief. When the court rejected the CTA's second effort to get out of the lawsuit, a trial date was set.
The most important provision of the settlement, says attorney Barry Taylor, is the requirement for an independent monitor to oversee and document CTA compliance for five years. The lawsuit was handled by Equip for Equality , a nonprofit law center that administers the federal Protection and Advocacy System in Illinois.
The settlement will require the CTA to install audio-visual equipment on buses to announce bus stop information to riders; fix and update the elevator system and hire more staff to service elevators quickly when they break down. CTA must allocate $100,000 a year for five years to address accessibility problems. The CTA is also being required to keep "a centralized database of all ADA-related complaints," says the settlement.
CTA employees will now face disciplinary action for passing customers with disabilities and refusing to stop; failing to report broken lifts or elevators; "failing to call out stops where required"; "deploying a lift in inappropriate locations" and "insolence or disrespect to a customer by a CTA employee -- a problem faced all too often by people with disabilities," says Equip for Equality.
Man in Iowa institution killed by restraint
by Dave Reynolds,
Inclusion Daily Express
The official finding by the state's medical examiner in July was that the 45-year-old man, who had mental retardation and cerebral palsy, died from "compression or positional asphyxia." In other words, he suffocated to death.
Tielebein suffocated to death on March 18 while staff members restrained him on a kitchen floor at Woodward Resource Center, a state-operated institution housing 270 people with mental retardation.
Even though Tielebein's death is officially listed as a homicide, no charges have been filed.
Investigators say that on the day of his death Tielebein began kicking, hitting and spitting at staff members. Several responded by putting Tielebein into a device that held his wrists to a waist belt. They then held him face-down on the floor for at least 15 minutes.
According to the official reports, the staff refused to release Tielebein even though he began sobbing and repeatedly said he was sorry. It was only at the point where one staff member noticed that Tielebein's skin was turning dark blue that they turned him over and tried unsuccessfully to revive him.
The institution has been cited for more than two dozen violations related to restraints. Included in those citations is the finding that the staff ignored the program that had been devised for Tielebein, who had lived at the facility for 25 years. That program instructed the staff to discontinue the use of restraint. In spite of those reports Woodward superintendent Dr. Michael Davis told the Des Moines Register that the violations were only related to documentation problems.
Supermarket chain agrees to access
by Dave Reynolds,
Inclusion Daily Express
WASHINGTON, DC, July 9 -- Linda Royster says a decision made by Shoppers Food Warehouse to improve accessibility at its 40 local stores not only settles the civil rights lawsuit filed against the supermarket chain, but also is good business.
"It's a win-win," said Royster, executive director of the Disability Rights Council of Greater Washington, which filed the suit on behalf of people with disabilities last year.
"It results in more customers for them, better publicity and better customer relations."
The Council found that nearly every store had barriers blocking access. The agreement will likely carry to other stores owned and operated by the Shoppers Food Warehouse's parent company Supervalu Inc., is the 10th largest supermarket retailer in the country.
"Stop Sutton" campaign moves into high gear on website
National disability groups opposing the nomination of attorney Jeffrey Sutton, Pres. George .W. Bush's nominee for the U.S. Court of Appeals for the 6th Circuit, have a new website, ADAwatch.org. At the website, advocates can learn the latest about Sutton and see who's signed on to the campaign. Sutton argued against the Americans with Disabilities Act before the U. S. Supreme Court last fall on the Garrett case.
How many more Elias Gutierrezes will have to die before cities like Fresno obey the 11-year-old Americans with Disabilities Act?
Mean Streets
by Ed Eames
Ed Eames is Chair of the Fresno Americans with Disabilities Act Advisory Council.
Sitting around the large conference table in Room 4017 in Fresno's City Hall on March 16, we heard the usual topics discussed. Little did we realize when Elias Gutierrez, with palpable fear in his voice, again noted the danger he faced on a daily basis traversing the streets of our city, that two days later he would be the victim of the city's lack of concern and wanton disregard for the safety of its citizens.
Most of the regulars were at the meeting. There were people from the Fresno Center for Independent Living, The National Federation of the Blind and the California Access Network. As chair of the Advisory Council, I was delighted to welcome several new wheelchair users to the group. In addition to disabled members of the community, representatives of the Fresno city administration were present.
Dr. Bob Quesada, Deputy City Manager, acting as liaison between the city and the Advisory Council, sat on my right. Scattered around the table were representatives of the Fire Department, Convention Center, Public Works and Traffic Engineering. The Fire Department reported that of the more than 1,000 fire hydrants inspected in the last month, none were in violation of the minimum mandated clear path of travel of 48 inches.
The Convention Center representative indicated the water fountain had been lowered to the required height and the women's toilet was being renovated to meet codes. Traffic engineering spokesperson reported on traffic signals where the crossing time had been extended to give pedestrians a fighting chance to get across the street. The Public Works representative talked about the proposed installation of audible pedestrian signals at several high-traffic pedestrian crosswalks.
Gutierrez, a member of the Advisory Council for more than a year, pressed the city representatives on what they were doing to remove parked cars blocking the sidewalks in his neighborhood. These vehicles were forcing him out into the street on a major road leading to the airport, he said, and he had had several near-accidents.
He was told that the area in question was a county pocket within Fresno, and the city could do nothing about ticketing the drivers or removing the cars.
We all joined Gutierrez in expressing our dismay at this impasse. The discussion then turned to the lack of curb ramps in the city. Once again Gutierrez spoke, telling of his inability to get to bus stops because of the lack of curb ramps. All Fresno city buses are equipped with wheelchair lifts, he said -- but what use were they when you couldn't get to them because you couldn't get up or down the sidewalks? Others voiced the same complaint.
Ever since joining the Advisory Council, Gutierrez had been complaining about the lack of sidewalks and curb ramps in Fresno. He had been forced into the streets to travel from his home to stores, recreation centers and friends' homes.
Gutierrez was foretelling his own death.
Two days after the meeting -- on Sunday, March 18 -- the 60-year-old activist was killed when he was struck by a car as he was traveling in his power wheelchair next to the curb on Palm Avenue near Cornell.
That evening, Fresno television stations broadcast the image of an overturned wheelchair on the sidewalk of Palm, and a single shoe in the street. It made a profound emotional impact.
The news report that night did not mention Gutierrez by name. We didn't know until the Fresno Bee published his name in a follow-up story the next day that the man killed had been our Elias Gutierrez.
Learning of his death, I became depressed, as did most of the Advisory Council members.
The motorist who killed Gutierrez admitted he was driving 40 miles an hour on a local street when he decided to switch lanes. The 40 miles an hour was the posted speed limit, even though it was a residential area. The motorist had not seen the wheelchair until it was too late.
For years, members of the Advisory Council had been exhorting city traffic engineers to lower speed limits and prolong crossing times at traffic signals. The city would always respond that our needs as pedestrians had to be balanced with the needs of motorists who had to get where they were going as quickly as possible. We were continually told that any increase in time for motorists at red lights would lead to more road rage, resulting in even more violence against pedestrians and other drivers. Our right to safe passage seemed never to enter the equation.
Gutierrez's daughter arrived in Fresno several days later to go over his things. She told me that in his journals Gutierrez constantly wrote of the fear he felt every time he went out in his wheelchair.
For many of us, depression soon turned to anger when we learned that the motorist who killed Gutierrez was being only cited for driving without a license. Had Gutierrez been nondisabled, his death would have been considered manslaughter, we felt sure.
Enraged by the incident and the manner in which it was being treated, we scheduled a public meeting on May 2. The city would have to answer some questions.
Our press conference May 1 had been planned to coincide with a City Council meeting. The four local network affiliates and the Fresno bilingual TV station all covered our statements, weaving in footage of the spot where Gutierrez was killed. The coverage helped spread the word about the next day's event.
The public meeting the following day was packed. Gutierrez's daughter from Connecticut and his former wife from New Mexico were there as well.
Calling the meeting to order, I asked the group for a moment of silence in tribute to our dead activist I had given considerable thought to what I wanted to see accomplished in this session. I wanted the city to know we would not let this incident go unnoticed. I wanted members of the disabled community to seize the opportunity to express their fears, hopes and anger in the presence of city officials and the press. I wanted to begin the development of a plan of action to avoid a repetition of this tragedy. As I sat in the seat reserved for the President of Fresno City Council, I thought about how unresponsive this body had been to the needs of Gutierrez and other wheelchair users.
When Sgt. Jim Lusk of the Traffic Division confirmed that driver had merely been cited -- for driving without a license -- disabled people demanded to know why charges of vehicular or involuntary manslaughter had not been lodged. Lusk said it might take up to six months to complete the investigation; it would then be up to the district attorney's office whether to press manslaughter charges. We were dismayed to hear the police say they had no idea as to the whereabouts of the driver.
We were told that since 1992 fewer than 400 corners in the city had been retrofitted with curb ramps. We learned the city had written to the Department of Justice in 1996 requesting an exemption from the ADA Title II mandate requiring curbs be ramped! The city had told DOJ there were more than 10,000 corners in Fresno needing curb ramps; despite this, a spokesperson said the Fresno Public Works Department was asking the city for only $175,000 for the next fiscal year -- to install 130 ramps.
We disabled people were stunned. We felt betrayed by the city.
The meeting wasn't just about curb ramps. City officials were asked about increased time for pedestrians to cross at traffic lights, installing audible pedestrian signals, removing barriers on sidewalks, providing access over railroad crossings. An amazing number of wheelchair pedestrians told the meeting that they, too had been involved in accidents, or nearly missed being hit. Over and over we heard, "We need sidewalks! We need ramps! We need time to get across streets!"
Our anger was permeating the chamber. A city staffer said he "sympathized with the plight of wheelchair users." "We don't want sympathy, we want action!" an Advisory Council member roared back.
Something had to be done, we all agreed, to avoid a repetition of the events leading to Gutierrez' death. The city had to lower speed limits. It had to install curb ramps. It had to increase pedestrian street crossing time at traffic signals. It had to enforce the laws about cars and obstacles obstructing sidewalks.
At an emotional budget hearing held on June 5, members of the Advisory Council urged the City Council to allocate $500,000 for cutting curbs, up from the $175,000 that had been sought. When the final budget was adopted, the recommended $500,000 allocation for curb ramps had been reduced to $225,000.
In July, the Fresno police department finished its investigation of the incident. They found the driver was going 48 mph and was at fault for not having a clear view of the road on the right when he decided to pass the car in front of him. They recommended to the district attorney that vehicular manslaughter charges be lodged against the driver.
A county-wide campaign is underway to pass a half-cent sales tax to appropriate funds for transportation. As a member of the Steering Committee convened to plan expenditures of the new tax income, I am working to include funding for audible pedestrian signals, sidewalk curb cuts, longer crossing time at signals and pedestrian overpasses at high traffic intersections -- so members of the Fresno disabled community will have a fighting chance to stay alive.
In Sacramento, California's capitol, the City Council approved a plan in January to spend $4.5 million annually installing or retrofitting more than 50,000 ramps over the next several decades. The plan came about as a result of a lawsuit filed years ago -- 1992 -- by the Oakland-based Disability Rights Advocates. In November, U. S. District Judge Milton L. Schwartz ruled ruled that Sacramento had "failed to meet its obligations" under the Americans with Disabilities Act by not installing cuts or repairing bad curb cuts when it resurfaced streets. But whether the ADA also requires cities to remove obstacles on sidewalks -- bus shelters, benches, poles -- that block access -- is a question that's now been appealed to the 9th Circuit Court of Appeals.
Some Dillery sidewalk fight fees unrecoverable, says court
Kelly Dillery cannot recoup all her attorney fees in her fight against the inaccessible sidewalks of Sandusky, Ohio,/ the Ohio Supreme Court ruled in July. Dillery sued the City of Sandusky for failing to maintain curb cuts (the Ability Center of Toledo sued them too, for the same thing) after the city had waged a long war against Dillery, who made national news in the Disability Nation for driving her wheelchair in the streets with her pre-school daughter on her lap (see, "Kelly Dillery and The Sandusky Register," Ragged Edge, March/April 1999). The state high court called Dillery's public-record requests "unreasonably broad." Among other things, Dillery wanted the public works department to turn over records showing "what the city had been doing since 1990 to try to repair streets so they comply with the Americans With Disabilities Act."
Distance learning--boon or bane?
by Art Blaser
Art Blaser is Professor of Political Science at Chapman University in Orange, California.
Marcus awoke at 7:30. His aide, Terry, helped him dress. Soon he was at his computer, taking a college course online before leaving for work. His employer had paid for the course. The professor had been helpful online; Marcus had received answers from her quickly when he'd been confused. His classmates were a "virtual family" for him. "Almost no one knows of my disability," he said.
Kristen hadn't slept. Her eviction was coming if she couldn't get another job to pay the rent. She'd lost her teaching job in the classroom ("Your future is in developing online offerings," they'd told her none too subtly. "No one will even know you're specially situated.").
Working online was not going smoothly for Kristen. The Admissions Officer had told her, "You should get a special high-speed phone line to take this course." With what money? Her aide, Amalya, might find the service agreement for her defective -- and costly -- screenreading software she was trying to use, but Amalya's workday started three hours ago, and she hadn't been heard from.
Online "distance learning" courses seem to be the coming thing in higher education. Are online courses a boon or a bane for the disability community? For people like Marcus, they're working fine. But for people like Kristen it's another story. The proverbial glass seems both half full -- and half empty.
Disability often means difficulty getting places, so online courses seem attractive. They seem a solution, too, for people with multiple chemical sensitivity and anxiety issues. And people with repetitive-stress injuries need a way to access the Internet by means other than the typical keyboard and mouse.
Much of the push for accessible online instruction has come from the blind community, though, who simply cannot access text materials unless they are in accessible formats -- accessible by "voice" -- or Braille -- output. At inaccessible sites, blind people are confronted simply with gibberish.
With Internet technology, newer does not mean more accessible. Web designers often ignore access, even when it's easy to provide. Although Macromedia's "Flash" plug-in has instructions that allow one to make it accessible, if they're followed a tenth of the time I'd be surprised.
But online course access requires not just the availability of accessible course materials. It also requires economic access.
Disabled people, more often than not, simply fall through the 'net. When it comes to the "digital divide," disability is a more significant variable than ethnicity, income or age. Blind users are much less likely than sighted people to have access to a computer, according to a study by the Benton Foundation; the study reported that nearly all of those with a walking problem said they had never used a computer. People in rural areas (where proportionally more disabled people live) have even less access to the Internet. The figures are worse in the rest of the world (where most disabled people live); the number of Internet hosts in rich industrialized countries is 1600 times greater than in Africa (other than South Africa).
Computer usage often accompanies higher income, education, and employment; disabled people lag behind nondisabled people on all three.
For online education, one needs more than just a computer. That computer must be hooked up to the Internet, at a reasonable "speed" -- and one must stay on the computer for hours at a time.
At the World Wide Web consortium, the international group that oversees Web standards, "there are a whole lot of people working rather feverishly on access issues, promoting a world-wide 'conspiracy,'" says W3C member Bill Loughborough.
Loughborough is active with the W3C's Education and Outreach Working Group, which combats with what the National Council on Disability called "discrimination by inadvertence." Many providers of inaccessible materials may not even know their materials are inaccessible, says the Council -- or that there is a better way, prescribed by the W3C's "Authoring Tool Accessibility Guidelines" (available at http://www.w3.org/TR/ATAG10/)
U.S. Secretary of Education Rod Paige has echoed the Bush Administration's pledge to "leave no one behind" and specifically mentioned students with disabilities as a beneficiary of distance education. But the benefit is only a potential one at the moment.
Disability is certainly on the radar screen of those providing distance education. But it's nowhere near the center. Online education is high on many agendas; web access isn't. There is a lot that's accessible in the current state of distance learning. But the truth is, I notice the inaccessible stuff. And there's far more of that.
The Commission on Institutions of Higher Education's guidelines on electronic education developed by the regional accrediting commissions mentions "requirements for service to those with disabilities" as an example of "legal and regulatory requirements" but says nothing further. A statement from the Western Association of Schools and Colleges says only that "access for learning or physically challenged students may pose some concerns since these students frequently avail themselves of distance learning." Both the Distance Education and Training Council (online at http://www.detc.org/) and the U. S. Distance Learning Association (http://www.usdla.org/) had inaccessible websites as of mid-July.
Beyond an introductory clause noting the "great potential" of high-quality programs for "homebound" students, the American Federation of Teachers, the collective bargaining agent for many higher education workers, makes no mention of access for either disabled AFT members or students in its July 2000 resolution "ensuring high quality in distance education." In 1999 the AFT had surveyed members involved in online education; no questions were asked about accessibility. Respondents, though, were overwhelmingly supportive of online education.
Universities can certainly ensure quality in accessible distance learning when they decide to. The California Community Colleges' August 1999 Access Guidelines for Distance Education were the result of pressure from the U.S. Dept. of Education's Office of Civil Rights, which had found "little attention . . . being given to ensure that these distance learning programs are accessible to students with disabilities, especially students with visual impairments."
The guidelines are outstanding. "Both state and federal law require community colleges to operate all programs and activities in a manner which is accessible to students with disabilities," they note. (The guidelines are online at http://www.htctu. fhda.edu/dlguidelines/ final%20dl%20guidelines.htm )
Other universities in California, though, seem simply to be trying to avoid web access. In a June 20 memo, California State University attorney Steven Raskovich wrote, "The Office of General Counsel has reviewed relevant statutes and regulations and concluded that the CSU is not required to comply with section 508." However, he added, "it may . . . depending on cost, be good policy for Cal States to [provide accessibility] to be more hospitable to the disabled."
Several for-profit corporations offer software "platforms" for conducting online courses. E-College is one. "At this time our product is quite sluggish with a screen reader," E-College said in response to my email query about access. "A new version will be fully usable by all of the federal disability standards.
"I wish I could accommodate you immediately, but unfortunately we're not quite ready," the E-College staffer continued, assuming that I must myself use a screen reader (I don't) -- and that my interest in web accessibility could only be personal.
For-profit institutions have discovered the value of web-based education, too. But disabled students and providers aren't central to their calculations.
Concord University School of Law, a division of Kaplan Incorporated (a subsidiary of the Washington Post), targets "family caregivers" for their online courses. Kaplan itself also has an online college. Its website didn't meet access standards when I tested it in late July; the "site feedback" form I filled out online produced this response from "the experts": "please specify the kind of accessibility you would need and what a screen reader is."
The University of Phoenix, which boasts that it is the nation's largest private university, has many online offerings. Its website didn't meet access standards. I was told that they'd accommodate me in the "exceptional" cases where I needed assistance. They, too, assumed incorrectly that I personally used a screen reader.
Barnes and Noble's online university, which touts itself as "The new BNU" -- "completely re-written from the ground up to improve performance, to add new features, and make it more easily navigable" -- was virtually inaccessible via screen reader.
There are online course that are outstanding in terms of access, though, including Independent Living Research Utilization's online course on the independent living philosophy. Courses on incorporating web access have been offered by Rochester Institute of Technology and Utah State University.
Online access is more than a good idea. It's the law.
Section 504 of the Rehabilitation Act of 1973 requires that disabled people not be "excluded from the participation in, denied the benefits of, or subjected to discrimination under any program or activity receiving Federal financial assistance." That includes higher education.
The Americans with Disabilities Act's Title II applies to state colleges and universities. "[T]he issue is not whether the student with the disability is merely provided access, but the extent to which the communication is actually as effective as that provided to others," said the Dept. of Education's Office of Civil Rights's 1998 report on the California Community Colleges. "Title II also strongly affirms the important role that computer technology is expected to play as an auxiliary aid." The ADA's Title III applies to "public accommodations," which include private colleges. The ADA mandates nondiscrimination "in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations."
The 1998 amendments to the Rehabilitation Act include Section 508, which requires that electronic and information technology developed, procured, maintained, or used by the Federal government be accessible to people with disabilities. Section 508's rules just took effect this past June. Although this may not constitute an obligation for universities that don't sell goods to the federal government, more universities than you might imagine do have federal government contracts.
Is online access "cost-effective?" Such questions generate conversations that shouldn't take place. When we declare something such as online access a "right," we remove it from that arena in which something is permitted only because it is "cost-effective." When we pass legislation ensuring rights, we make a statement: those rights are too important to be guaranteed only when they're cost-effective.
Arguments against web access use cost arguments speciously. An "expensive" course would cost $30,000 to adapt; a "less-expensive" one $15,000, went one such discussion. Other estimates say providing access costs $2,000 to $3,000 a course. Yet both examples imply that access is something to be "added on" to an already-designed inaccessible course. In fact, following accessible design principles and using the accessible features of ready-made software costs nothing more at all. Designing for access can often be cheaper, since one can eschew the bells and whistles of high-end graphics and animation that make many sites inaccessible but which are totally unnecessary in terms of communicating content.
At any rate, says Loughborough, "programmers now are much cheaper than lawyers later."
Even if online education does become accessible, the jury is still out on whether such distance learning is the boon it's said to be for disabled people.
A Harris Poll last year reported that 48 percent of disabled people using the web had "significant improvement" in their lives, compared to 27 percent of nondisabled people. Maybe that means that the Internet is good. Maybe it means something else: inability to navigate store aisles, condescending attitudes of personnel, and a transportation system that may mean spending hours to make a store visit. Disabled skeet-shooters may enjoy the hobby more that their nondisabled peers; it doesn't follow that if more disabled people took up skeet-shooting their lives would improve.
Worries that distance learning will become a way to enforce "separate and unequal" are not unfounded: "If 'they' can take classes over the web, we don't have to make classrooms accessible," we can imagine administrators thinking. Online courses may offer a new means of segregating "difficult" students. What better way to show students they are "special" than to deport them to the cyberclassroom where they can't be disruptive?
As Kristen's and Mark's stories show, while the web can provide a virtual community, it can also be a way to discriminate.
College is a time for gaining new experiences, meeting new people, expanding horizons. What happens when your "college" is only the computer in your bedroom?
Profit and higher education are an uneasy combination. Tales of "digital diploma mills" come from historian David Noble, who says, "it is not really about education at all. That's just the name of the market." The "educational market," he predicts, "will eventually become dominated by EMOs -- education maintenance organizations -- just like HMOs in the healthcare market." Only those enjoying privilege will have "residential" educations, actually attending colleges, he says. Those with less privilege will get educated online, or not at all.
Other critics say just the opposite: that in a world of mostly online higher education, only the "privileged" will have the latest technology such as high-speed DSL phone lines to let them get the degrees and credentials to be a lawyer, doctor, manager; that a lack of access to the technology means a limited future.
Can the disability community affect the future of distance learning? Absolutely. We can move the "should it be accessible?" discussion from "it's the right thing to do" (with conditions attached) to "It's the only thing to do."
The formation of the National Disabled Student Union is a promising sign. Rankings of the "disability friendliness" of institutions would help, too. Today, influential rankings such as those compiled by U. S. News & World Report don't put accessible high-quality online offerings into their equations -- but they should. We can get that to happen.
Where access is denied, legal action is an option, of course. Issues of web access were the basis of complaints against San Jose State University, California State University Long Beach, the California Community Colleges and California State University at Los Angeles -- and in each case the problems were resolved. Concerns for web access and for bridging the disability digital divide are mutually reinforcing. The danger is that online education will create a misleading appearance of options. The hope is that for the disability community, the appearance of options won't be misleading but real.
The email message received from
"Dear Barnes & Noble University Student: As you probably know, BNU launched an entirely new version of its online university on Saturday, July 14th. The new BNU has been completely re-written from the ground up to improve performance, to add new features, and make it more easily navigable. It's faster, more reliable, and has all of the underpinnings to allow us to add additional features and tools that would have been imposssible in the former release."
Here's How the "faster, more reliable" site at http://www.barnesandnobleuniversity.com would appear when you visit it using the popular the screen-reader Lynx version 2.7.1:
[logo.gif] [spcr.gif] [admin_cart_0410.gif] [admin_acct_0410.gif] [admin_help_0410.gif] [admin_status_0410.gif] [spcr.gif] [tab_cap_left.gif] [tab_home_cold.gif] [tab_pipe.gif] [tab_books_cold.gif] [tab_pipe.gif] [tab_oop_cold.gif] [tab_pipe.gif] [tab_textbooks_cold.gif] [tab_pipe.gif] [tab_bargain_books_cold.gif] [tab_pipe.gif] [tab_ebooks_cold.gif] [tab_pipe.gif] [tab_article_cold.gif] [tab_pipe.gif] [tab_music_cold.gif] [tab_pipe.gif] [tab_dvd_cold.gif] [tab_pipe.gif] [tab_pcvideo_games_cold.gif] [tab_pipe.gif] [tab_magazines_cold.gif] [tab_pipe_clear.gif] [tab_online_hot.gif] [tab_cap_right.gif] [spcr.gif] [spcr.gif] About BNU [spcr.gif] [whitedot.gif] [spcr.gif] Browse All Courses [spcr.gif] [whitedot.gif] [spcr.gif] Teach for BNU [spcr.gif] [whitedot.gif] [spcr.gif] Tell a Friend [spcr.gif] [whitedot.gif] [spcr.gif] BNU HelpDesk [spcr.gif] [whitedot.gif] [spcr.gif] BNU FAQs [spcr.gif] [whitedot.gif] [spcr.gif] Contact BNU [spcr.gif] [spcr.gif] [spcr.gif] [spcr.gif] [spcr.gif] www.powered.com [spcr.gif] [spcr.gif] [spcr.gif] [spcr.gif] [vcart_header3.gif] [cleardot.gif] [cleardot.gif] [cleardot.gif] [cleardot.gif] [cleardot.gif] [cleardot.gif] [cleardot.gif] [cleardot.gif] No items in cart. [cleardot.gif] [cleardot.gif] [cleardot.gif] [vcart_checkout3.gif] [spcr.gif] New Students It's FREE! Register today! [button_registernow.gif] [orange_arrow.gif] More Info [spcr.gif]
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Helen Keller & the FBI
by Fred Pelka
Fred Pelka is author of the ABC-CLIO Companion to the Disability Rights Movement (ABC-CLIO, Inc., 1997)
"The FBI has not conducted an investigation with regard to Helen Adams Keller. The files of this Bureau, however, do reflect the following pertinent information concerning this individual. This information may be presumed to have been obtained from reliable sources unless it is indicated otherwise."
-- FBI memorandum on Helen Keller, July 1, 1953.
Mention the name "Helen Keller" and most Americans think of Patty Duke in The Miracle Worker. Keller is, in the popular mind, the ultimate "super-crip," the deaf-blind girl who "overcame" her disabilities through the help of an extraordinary teacher.
"But the blind man," Keller wrote in 1911, "cannot become an independent, self-supporting member of society . . . until all his seeing brothers have opportunity to work to the full extent of their ability." She repeated this theme the following year in a letter she wrote in support of striking mill workers in Little Falls, New York. "If they are denied a living wage, I also am defrauded. While they are industrial slaves, I cannot be free." An advocate of political organizing, Keller wrote in 1915 that "Rights are things that we get when we are strong enough to claim them."
With her near-beatification in the years since her death, it is difficult to recognize what a controversial figure Keller was during her life. Born in 1880 in Tuscumbia, Alabama, she came of age in an America where racial segregation was law, unions were violently suppressed, birth control was illegal and the idea of women as voters (let alone politicians) was dismissed as laughably absurd. Keller publicly took a position on all these issues, and was vehemently criticized for doing so.
In December 2000, I wrote to the U. S. Department of Justice asking to see Helen Keller's FBI file, under the provisions of the Freedom of Information/ Privacy Act (FoIPA). What the FBI sent me, in January 2001, was a folder containing 43 photocopied pages. Sixteen additional pages, according to a "Deleted Page Information Sheet," were held back as being "outside the scope" of my request.
Substantial portions of the pages I was sent in this original batch were excised "under Section 552a (Privacy Act)," which allows for such deletions if the material "could reasonably be expected to constitute an unwarranted invasion of personal privacy," or "could reasonably be expected to disclose the identity of a confidential source." Excisions on one page were so extensive that every word was covered over, except for the underlined phrase, "Other Communist Activities, Fronts, and Miscellaneous."
I appealed, asking to see the excised portions and deleted pages. In late May 2001, I received an additional 24 pages. Twenty pages were from the June, 1947 issue of the "Monthly Summary of Trends and Developments," identified as a publication of "the National Americanism Commission/Sub Committee on Subversive Activities" of the American Legion. The Summary is a catch-all of rumor, innuendo, and red-baiting, castigating such "Communist" agents and sympathizers as Charlie Chaplin, Dorothy Parker, Edward G. Robinson -- and Helen Keller.
In his letter accompanying this material, Richard L. Huff, co-director of the U.S. Department of Justice Office of Information and Privacy, wrote that "The only information [now] withheld from you consists of the names of FBI law enforcement employees. The FBI properly withheld this information because it is protected from disclosure under the Freedom of Information Act . . ."
The earliest item in Keller's file is a handwritten note to J. Edgar Hoover dated January 2, 1925, asking for information on the funding of state institutions for the blind. This matter came to the writer's attention during a lecture by "the Well Known Blind girl" Helen Keller. The Keller file ends with a typed cover letter of June 24, 1964, to a "memorandum . . . summarizing information in our files concerning captioned individual as of that time."
In the nearly four decades separating these two documents, J. Edgar Hoover had turned the FBI into a national intelligence service specializing in the surveillance of political dissidents. "Under Hoover," writes Ronald Kessler in The FBI: Inside the World's Most Powerful Law Enforcement Agency, (Simon & Schuster, 1993), "the Bureau illegally broke into homes and businesses, engaged in wiretapping without proper authorization, collected derogatory information for political reasons, and leaked to the press damaging information about people like Martin Luther King. Confusing political dissent with subversion, Hoover's FBI spied on Americans exercising their constitutional rights of free expression and tried to disrupt their political movements. . . ." Using its files to blackmail presidents and Congress, Hoover remained FBI director until his death in 1972.
In January 1925, "the well-known blind girl" Helen Keller was 44 years old. She had published three books, including her best-seller The Story of My Life, toured the world, and had already been the subject of at least one movie (Deliverance, 1919). By June 1964, she was retired from public life, after a stroke three years earlier. She died in 1968.
Like many progressives of the early 20th century, Helen Keller believed that socialism offered the only alternative to the unbridled and rapacious capitalism of sweatshops and child labor. "I am no worshipper of cloth of any colour," she wrote in 1912, " but I love the red flag and what it symbolizes to me and other Socialists. I have a red flag hanging in my study..." When asked what young women could do to improve the world, she urged them to study industrial economics. "I am a militant suffragette," she told a British feminist in 1911, "because I believe suffrage will lead to Socialism and to me Socialism is the ideal cause."
All of this was before Hoover's appointment as FBI director in 1924. According to biographer Joseph P. Lash (Helen and Teacher, Delacorte Press 1980), Keller had by the late 1920s begun to softpedal her radical politics, devoting most of her time to fundraising for the American Foundation for the Blind. It is probably for this reason that there was never a full-fledged investigation of Helen Keller by the FBI. But while the Bureau may not have spent agent-hours investigating (or harassing) Keller directly, it did take an interest in her political activities.
A memorandum dated November 8, 1956, notes that the April 9, 1938 issue of "an east coast Communist newspaper" the Daily Worker carried an article about an appeal to lift the arms embargo against the Spanish government, which was then struggling against the military uprising led by General Francisco Franco (with the support of Adolf Hitler and Benito Mussolini). The petition was sponsored by the American Friends of Spanish Democracy, and signed by Helen Keller. "The American Friends of Spanish Democracy," according to an FBI memo of July 1, 1953, "was referred to by the [Congressional] Special Committee on Un-American Activities, in its report dated March 29, 1944" as a Communist front organization.
Keller's name popped up in the Daily Worker on other occasions, and was duly noted by the FBI each time. "The . . . issue dated February 15, 1939, reported that Helen Keller would speak at a memorial meeting to be held under the auspices of the Friends of the Abraham Lincoln Brigade," American volunteers who went to Spain in the 1930s to fight on the republican side. Like the Friends of Spanish Democracy, the brigade was "referred to as a Communist-front organization by the Special Committee on Un-American Activities."
There is, of course, an important distinction between being a "Communist" or "Communist front," and merely being "referred to" or even "cited" as such by professional red-baiters such as the House Committee on Un-American Activities. (Not to mention that presumably even Communists and their "fellow travelers" are entitled to the rights of free speech and assembly). This "referred to" language becomes especially suspect when one realizes that FBI files, as Kessler reported, were often made available to selected individuals and organizations without the knowledge (and certainly without the consent) of their subjects.
In Keller's case, the "name check" memo of July 1953 ends with the disclaimer that the material "is furnished for your confidential information and is not to be disseminated outside your agency," and each page is marked "SECURITY INFORMATION CONFIDENTIAL", but this was hardly an effort to protect her reputation. What remains protected to this day, however, are the identities of those public officials who asked the FBI to provide them with "information" on Keller. Nor is it known to what use, if any, this "information" was put.
Keller's activities were of interest to the Bureau even when she was disassociating herself from the radical left. Her file notes that she resigned as Honorary National Chairman of the American Rescue Ship Mission, summarizing an article in the February 8, 1941 issue of the New York Times as saying that Keller had concluded "that she had been used as a front for controlling figures more interested in Communism than in the [Mission's] avowed purpose" of rescuing Spanish republicans after Franco's victory. It also reports that Keller denounced a late 1952 international peace conference in Vienna, which had used her name to solicit support, "as a mask for the products of Stalinist propaganda."
Other items, though, more or less repeat the theme of Keller as Communist sympathizer or dupe, often with a less-than-scrupulous concern for the facts:
¥"A letterhead of the National Council of American-Soviet Friendship, Incorporated . . . dated November 10, 1948, reflected that Helen Keller was a sponsor of that organization. The National Council of American-Soviet Friendship, Incorporated, was cited by the Attorney General as a Communist organization." Other members of the NCASF at that time were actor Raymond Massey, New York City mayor Fiorello LaGuardia, Bishop Henry Sherrill, and Albert Einstein.
¥"According to a reliable source, Helen Keller was a sponsor of the Independent Citizens Committee of the Arts, Sciences and Professions. . . . Keller was listed as one of the Speakers at a rally at Madison Square Gardens in New York City on December 4, 1945, which was sponsored by the Independent Citizens Committee of the Arts, Sciences, and Professions, Incorporated, which organization was cited as a Communist front by the Special Committee on Un-American Activities, U. S. House of Representatives." This "reliable source" apparently didn't think it important to report how this "Communist front" began life as the "Independent Voters Committee of the Arts and Sciences for Roosevelt" in the 1944 presidential campaign. Among the other "un-American" causes it embraced at the 1945 rally was the civilian control of atomic energy, while other subversives who appeared at its events included Orson Welles, Sinclair Lewis, and Vice-President Henry Wallace.
¥"It was reported that Helen Keller, blind author and educator, was one of a group of individuals sending messages of condolence on the occasion of the funeral of Mother Bloor, well-known Communist Party member on August 14, 1951." Lash identifies Ella Reeve Bloor as "a legendary figure in the American labor movement, whom Helen had known" for decades. And so on.
Keller's own response to this sort of red-baiting can be seen in the "name check" of July 1, 1953. "The Washington, D.C., Times Herald issue dated January 24, 1948, carried an article headlined, "Plan to Smear Red-Probers Hit by Congressman," wherein it was reported that Helen Keller was one of the original sponsors of the Committee of One Thousand." The committee was predictably tagged as "a Communist created and controlled front organization" as "cited by the California Committee on Un-American Activities. . . . In March 1948, there was made available to this Bureau a copy of a letter which was sent to the Speaker of the House of Representatives in protest against the action of the Committee on Un-American Activities of the House of Representatives. Helen Keller was listed as one of the signers of this letter."
Much of the rest of the material on Keller is entirely mundane. Many pages are simply photo-copies of the "Keller, Helen Adams" entries of contemporary editions of Who's Who in America and Current Biography. Other pages are copies of form letters Keller sent to J. Edgar Hoover on behalf of the American Foundation for the Blind and its various projects.
"You have doubtless read of Korea's countless war casualties," she wrote the director on November 26, 1954. "Yet the most poignant aspect of the total disaster is the tragic fate of so many of Korea's children -- their eyes blinded by war. . . . Recognizing that there can be no nobler purpose than to comfort suffering children I have asked the American Foundation for the Overseas Blind to launch, as part of its world-wide service, a crusade to aid Korea's blind youngsters. . . . Fervently I pray that you will help me . . . by sending a gift today. . . ."
The letter was funneled to an FBI staffer, who replied in a memo dated November 30, 1954, ("Subject: HELEN KELLER SOLICITATION FOR AID TO THE BLIND"). It was recommended that "inasmuch as it is a form letter and in view of the large number of similar requests received by the Director, it is not felt that this letter should be acknowledged."
This note was sent to a Mr. Nichols, presumably Louis B. Nichols, long-time head of the "Crime Records Division," which Ronald Kessler identifies as the "austere sounding name given to the public and Congressional relations arm of the FBI, started in 1934."
The name of the memo's writer, however, remains deleted.
Parts of the FBI file on Helen Keller -- some of what Pelka obtained, but not all of it --
is available as a pdf file for downloading at http://csf.colorado.edu/ mirrors/marxists.org/reference/archive/kellerhelen/index.htm
It's huge -- nearly 3 megabytes -- and, being a compilation of scans of the letters sent by the FBI, it appears only as graphic images and thus is inaccessible to anyone who, like Keller, is blind.
So long as I confine my activities to social service and the blind, they compliment me extravagantly, calling me 'archpriestess of the sightless,' 'wonder woman,' and 'a modern miracle.' But when it comes to a discussion of poverty, and I maintain that it is the result of wrong economics -- that the industrial system under which we live is at the root of much of the physical deafness and blindness in the world -- that is a different matter!
-- Helen Keller, in a letter to Socialist Party presidential candidate Robert LaFollette, 1924.
LOST DISABILITY CLASSICS
More than three decades after her death in 1968, Helen Keller is undergoing something of a resurrection. Dorothy Hermann's 1998 biography, Helen Keller: A Life (see book review in Ragged Edge, January 1999) takes Keller down off the pedestal and treats her as a real human being, riven by conflicts; an intelligent, hard-working woman with strong beliefs, but hardly the genius-saint she has so often been presented as. Disability rights activists and writers are re-examining Keller's legacy, writings, activism and life, and understanding the ways she both played the role of "model handicapped person" and rebelled against it.
For this issue's Lost Classics, we present two pieces by Keller: The first is "Why I Became A Socialist" (originally printed in the New York Call on November 3, 1912, and later in Helen Keller: Her Socialist Years, edited by Philip Foner and published by International Publishers). Following that is an excerpt from her book, The World I Live In, which, in its insistence on the value of her means of perceiving the world, anticipates disability culture.
Ð Anne Finger
How I Became a Socialist
by Helen Keller
For several months my name and socialism have appeared often together in the newspapers. A friend tells me that I have shared the front pages with baseball, Mr. Roosevelt and the New York police scandal. The association does not make me altogether happy but, on the whole, I am glad that many people are interested in me and in the educational achievements of my teacher, Mrs. Macy [Anne Sullivan's married name]. Even notoriety may be turned to beneficent uses, and I rejoice if the disposition of the newspapers to record my activities results in bringing more often into their columns the word Socialism. In the future I hope to write about socialism, and to justify in some measure the great amount of publicity which has been accorded to me and my opinions. So far I have written little and said little about the subject. I have written a few letters, notably one to Comrade Fred Warren which was printed in the Appeal to Reason. I have talked to some reporters, one of whom, Mr. Ireland of the New York World, made a very flattering report and gave fully and fairly what I said. I have never been in Schenectady. I have never met Mayor [a socialist elected as mayor of Schenectady, New York in 1911]. I have never had a letter from him, but he has sent kind messages to me through Mr. Macy. Owing to Mrs. Macy's illness, whatever plans I had to join the workers in Schenectady have been abandoned.
On such negative and relatively insignificant matters have been written many editorials in the capitalist press and in the Socialist press. The clippings fill a drawer. I have not read a quarter of them, and I doubt if I shall ever read them all. If on such a small quantity of fact so much comment has followed, what will the newspapers do if I ever set to work in earnest to write and talk in behalf of socialism? For the present I should like to make a statement of my position and correct some false reports and answer some criticisms which seem to me unjust.
First -- How did I become a Socialist? By reading. The first book I read was Wells' New World for Old. I read it on Mrs. Macy's recommendation. She was attracted by its imaginative quality, and hoped that its electric style might stimulate and interest me. When she gave me the book, she was not a Socialist and she is not a Socialist now. Perhaps she will be one before Mr. Macy and I are done arguing with her.
My reading has been limited and slow. I take German bimonthly Socialist periodicals printed in braille for the blind. (Our German comrades are ahead of us in many respects.) . . . The other socialist literature that I have read has been spelled into my hand by a friend who comes three times a week to read to me whatever I choose to have read. . . . Manual spelling takes time. It is no easy and rapid thing to absorb through one's fingers a book of 50,000 words on economics. But it is a pleasure, and one which I shall enjoy repeatedly until I have made myself acquainted with all the classic socialist authors.
In the light of the foregoing I wish to comment on a piece about me which was printed in the Common Cause and reprinted in the Live Issue, two antisocialist publications. Here is a quotation from that piece:
"For twenty-five years Miss Keller's teacher and constant companion has been Mrs. John Macy, formerly of Wrentham, Mass. Both Mr. and Mrs. Macy are enthusiastic Marxist propagandists, and it is scarcely surprising that Miss Keller, depending upon this lifelong friend for her most intimate knowledge of life, should have imbibed such opinions."
Mr. Macy may be an enthusiastic Marxist propagandist, though I am sorry to say he has not shown much enthusiasm in propagating his Marxism through my fingers. Mrs. Macy is not a Marxist, nor a socialist. Therefore what the Common Cause says about her is not true. The editor must have invented that, made it out of whole cloth, and if that is the way his mind works, it is no wonder that he is opposed to socialism. He has not sufficient sense of fact to be a socialist or anything else intellectually worthwhile.
Consider another quotation from the same article. The headline reads:
"SCHENECTADY REDS ARE ADVERTISING; USING HELEN KELLER, THE BLIND GIRL, TO RECEIVE PUBLICITY."
Then the article begins:
"It would be difficult to imagine anything more pathetic than the present exploitation of poor Helen Keller by the Socialists of Schenectady. For weeks the party's press agencies have heralded the fact that she is a Socialist, and is about to become a member of Schenectady's new Board of Public Welfare."
There's a chance for satirical comment on the phrase, "the exploitation of poor Helen Keller." But I will refrain, simply saying that I do not like the hypocritical sympathy of such a paper as the Common Cause, but I am glad if it knows what the word "exploitation" means. . . .
The New York Times did ask me for [an article]. The editor of the Times wrote assuring me that his paper was a valuable medium for reaching the public and he wanted an article from me. He also telegraphed asking me to send him an account of my plans and to outline my ideas of my duties as a member of the Board of Public Welfare of Schenectady. I am glad I did not comply with this request, for some days later the Times made me a social outcast beyond the range of its righteous sympathies. On September 21 there appeared in the Times an editorial called "The Contemptible Red Flag." I quote two passages from it:
"The flag is free. But it is none the less detestable. It is the symbol of lawlessness and anarchy the world over, and as such is held in contempt by all right-minded persons."
"The bearer of a red flag may not be molested by the police until he commits some act which the red flag justifies. He deserves, however, always to be regarded with suspicion. By carrying the symbol of lawlessness he forfeits all right to respect and sympathy."
I am no worshipper of cloth of any color, but I love the red flag and what it symbolizes to me and other Socialists. I have a red flag hanging in my study, and if I could I should gladly march with it past the office of the Times and let all the reporters and photographers make the most of the spectacle. According to the inclusive condemnation of the Times I have forfeited all right to respect and sympathy, and I am to be regarded with suspicion. Yet the editor of the Times wants me to write him an article! How can he trust me to write for him if I am a suspicious character? I hope you will enjoy as much as I do the bad ethics, bad logic, bad manners that a capitalist editor falls into when he tries to condemn the movement which is aimed at this plutocratic interests. We are not entitled to sympathy, yet some of us can write articles that will help his paper to make money. Probably our opinions have the same sort of value to him that he would find in the confession of a famous murderer. We are not nice, but we are interesting.
I like newspapermen. I have known many, and two or three editors have been among my most intimate friends. Moreover, the newspapers have been of great assistance in the work which we have been trying to do for the blind. It costs them nothing to give their aid to work for the blind and to other superficial charities. But socialism -- ah, that is a different matter! That goes to the root of all poverty and all charity. The money power behind the newspapers is against socialism, and the editors, obedient to the hand that feeds them, will go to any length to put down socialism and undermine the influence of socialists.
When my letter to Comrade Fred Warren was published in the Appeal to Reason, a friend of mine who writes a special department for the Boston Transcript made an article about it and the editor-in-chief cut it out.
The Brooklyn Eagle says, apropos of me, and socialism, that Helen Keller's "mistakes spring out of the manifest limitations of her development." Some years ago I met a gentleman who was introduced to me as Mr. McKelway, editor of the Brooklyn Eagle. It was after a meeting that we had in New York in behalf of the blind. At that time the compliments he paid me were so generous that I blush to remember them. But now that I have come out for socialism he reminds me and the public that I am blind and deaf and especially liable to error. I must have shrunk in intelligence during the years since I met him. Surely it is his turn to blush. It may be that deafness and blindness incline one toward socialism. Marx was probably stone deaf and William Morris was blind. Morris painted his pictures by the sense of touch and designed wall paper by the sense of smell.
Oh, ridiculous Brooklyn Eagle! What an ungallant bird it is! Socially blind and deaf, it defends an intolerable system, a system that is the cause of much of the physical blindness and deafness which we are trying to prevent. The Eagle is willing to help us prevent misery provided, always provided, that we do not attack the industrial tyranny which supports it and stops its ears and clouds its vision. The Eagle and I are at war. I hate the system which it represents, apologizes for and upholds. When it fights back, let it fight fair. Let it attack my ideas and oppose the aims and arguments of Socialism. It is not fair fighting or good argument to remind me and others that I cannot see or hear. I can read. I can read all the socialist books I have time for in English, German and French. If the editor of the Brooklyn Eagle should read some of them, he might be a wiser man and make a better newspaper. If I ever contribute to the Socialist movement the book that I sometimes dream of, I know what I shall name it: Industrial Blindness and Social Deafness.
The Helen Keller Internet Archive provided by marxists.org (at http://csf.colorado.edu/ mirrors/ marxists.org/reference/archive/ keller-helen/index.htm) naturally provides those of her writings of a Marxist bent. It includes
1912:How I Became a Socialist
1913:A Call For Harmony
1913:Why Men Need Woman Suffrage
1913:New Vision for the Blind
1914:Brutal Treatment of the Unemployed n Sacramento Star
1915:Menace of the Militarist Program
1916:Strike Against War
1916:Why I Became an IWW
1917:Letter to Morris Hillquit
1918: What Is The IWW?
1918: In Behalf of the IWW
1919: To Eugene V. Debs
1919: End the Blockade of Soviet Russia!
1921: Help Soviet Russia
1929: The Spirit of Lenin
The World I Live In
The Seeing Hand
I have just touched my dog. He was rolling on the grass, with pleasure in every muscle and limb. I wanted to catch a picture of him in my fingers, and I touched him as lightly as I would cobwebs; but lo, his fat body revolved, stiffened and solidified into an upright position, and his tongue gave my hand a lick! He pressed close to me, as if he were fain to crowd himself into my hand. He loved it with his tail, with his paw, with his tongue. If he could speak, I believe he would say with me that paradise is attained by touch; for in touch is all love and intelligence.
This small incident started me on a chat about hands, and if my chat is fortunate I have to thank my dog-star. In any case, it is pleasant to have something to talk about that no one else has monopolized; it is like making a new path in the trackless woods, blazing the trail where no foot has pressed before. I am glad to take you by the hand and lead you along an untrodden way into a world where the hand is supreme. But at the very outset we encounter a difficulty. You are so accustomed to light, I fear you will stumble when I try to guide you through the land of darkness and silence. The blind are not supposed to be the best of guides. Still, though I cannot warrant not to lose you, I promise that you shall not be led into fire or water, or fall into a deep pit. If you will follow me patiently, you will find that "there's a sound so fine, nothing lives 'twixt it and silence," and that there is more meant in things than meets the eye.
My hand is to me what your hearing and sight together are to you. In large measure we travel the same highways, read the same books, speak the same language, yet our experiences are different. All my comings and goings turn on the hand as on a pivot. It is the hand that binds me to the world of men and women. The hand is my feeler with which I reach through isolation and darkness and seize every pleasure, every activity that my fingers encounter. With the dropping of a little word from another's hand into mine, a slight flutter of the fingers, began the intelligence, the joy, the fullness of my life. Like Job, I feel as if a hand had made me, fashioned me together round about and molded my very soul.
In all my experiences and thoughts I am conscious of a hand. Whatever moves me, whatever thrills me, is as a hand that touches me in the dark, and that touch is my reality. You might as well say that a sight which makes you glad, or a blow which brings the stinging tears to your eyes, is unreal as to say that those impressions are unreal which I have accumulated by means of touch. The delicate tremble of a butterfly's wings in my hand, the soft petals of violets curling in the cool folds of their leaves or lifting sweetly out of the meadow-grass, the clear, firm outline of face and limb, the smooth arch of a horse's neck and the velvety touch of his nose Ð all these, and a thousand resultant combinations, which take shape in my mind, constitute my world.
Ideas make the world we live in, and impressions furnish ideas. My world is built of touch-sensations, devoid of physical color and sound; but without color and sound it, breathes and throbs with life. Every object is associated in my mind with tactual qualities which, combined in countless ways, give me a sense of power, of beauty, or of incongruity: for with my hands I can feel the comic as well as the beautiful in the outward appearance of things. Remember that you, dependent on your sight, do not realize how many things are tangible. All palpable things are mobile or rigid, solid or liquid, big or small, warm or cold, and these qualities are variously modified. The coolness of a water-lily rounding into bloom is different from the coolness of an evening wind in summer, and different again from the coolness of the rain that soaks into the hearts of growing things and gives them life and body. The velvet of the rose is not that of a ripe peach or of a baby's dimpled cheek. The hardness of the rock is to the hardness of wood what a man's deep bass is to a woman's voice when it is low. What I call beauty I find in certain combinations of all these qualities, and is largely derived from the flow of curved and straight lines which is over all things.
"What does the straight line mean to you?" I think you will ask.
It means several things. It symbolizes duty. It seems to have the quality of inexorableness that duty has. When I have something to do that must not be set aside, I feel as if I were going forward in a straight line, bound to arrive somewhere, or go on forever without swerving to the right or to the left.
That is what it means. To escape this moralizing you should ask, "How does the straight line feel?" It feels, as I suppose it looks, straight -- a dull thought drawn out endlessly. Eloquence to the touch resides not in straight lines, but in unstraight lines, or in many curved and straight lines together. They appear and disappear, are now deep, now shallow, now broken off or lengthened or swelling. They rise and sink beneath my fingers, they are full of sudden starts and pauses, and their variety is inexhaustible and wonderful. So you see I am not shut out from the region of the beautiful, though my hand cannot perceive the brilliant colors in the sunset or on the mountain, or reach into the blue depths of the sky.
Physics tells me that I am well off in a world which, I am told, knows neither color nor sound, but is made in terms of size, shape, and inherent qualities; for at least every object appears to my fingers standing solidly right side up, and is not an inverted image on the retina which, I understand, your brain is at infinite though unconscious labor to set back on its feet. A tangible object passes complete into my brain with the warmth of life upon it, and occupies the same place that it does in space; for, without egotism, the mind is as large as the universe. When I think of hills, I think of the upward stretches that I tread upon. When water is the object of my thought, I feel the cool shock of the plunge and the quick yielding of the waves that crisp and curl and ripple about my body. The pleasing changes of rough and smooth, pliant and rigid, curved and straight in the bark and branches of a tree give the truth to my hand. The immovable rock, with its juts and warped surface, bends beneath my fingers into all manner of grooves and hollows. The bulge of a watermelon and the puffed-up rotundities of squashes that sprout, bud, and ripen in that strange garden planted somewhere behind my finger-tips are the ludicrous in my tactual memory and imagination. My fingers are tickled to delight by the soft ripple of a baby's laugh, and find amusement in the lusty crow of the barnyard autocrat. Once I had a pet rooster that used to perch on my knee and stretch his neck and crow. A bird in my hand was then worth two in the Ð barnyard.
My fingers cannot, of course, get the impression of a large whole at a glance; but I feel the parts, and my mind puts them together. I move around my house, touching object after object in order, before I can form an idea of the entire house. In other people's houses I can touch only what is shown me Ð the chief objects of interest, carvings on the wall, or a curious architectural feature, exhibited like the family album. Therefore a house with which I am not familiar has for me, at first, no general effect or harmony of detail. It is not a complete conception, but a collection of object-impressions which, as they come to me, are disconnected and isolated. But my mind is full of associations, sensations, theories, and with them it constructs the house. The process reminds me of the building of Solomon's temple, where was neither saw, nor hammer, nor any tool heard while the stones were being laid one upon another. The silent worker is imagination which decrees reality out of chaos.
Without imagination what a poor thing my world would be! My garden would be a silent patch of earth strewn with sticks of a variety of shapes and smells. But when the eye of my mind is opened to its beauty, the bare ground brightens beneath my feet, and the hedge-row bursts into leaf, and the rose-tree shakes its fragrance everywhere. I know how budding trees look, and I enter into the amorous joy of the mating birds, and this is the miracle of imagination.
Twofold is the miracle when, through my fingers, my imagination reaches forth and meets the imagination of an artist which he has embodied in a sculptured form. Although, compared with the life-warm, mobile face of a friend, the marble is cold and pulseless and unresponsive, yet it is beautiful to my hand. Its flowing curves and bendings are a real pleasure; only breath is wanting; but under the spell of the imagination the marble thrills and becomes the divine reality of the ideal. Imagination puts a sentiment into every line and curve, and the statue in my touch is indeed the goddess herself who breathes and moves and enchants.
It is true, however, that some sculptures, even recognized masterpieces, do not please my hand. When I touch what there is of the Winged Victory, it reminds me at first of a headless, limbless dream that flies toward me in an unrestful sleep. The garments of the Victory thrust stiffly out behind, and do not resemble garments that I have felt flying, fluttering, folding, spreading in the wind. But imagination fulfills these imperfections, and straightway the Victory becomes a powerful and spirited figure with the sweep of sea-winds in her robes and the splendor of conquest in her wings.
I find in a beautiful statue perfection of bodily form, the qualities of balance and completeness. The Minerva, hung with a web of poetical allusion, gives me a sense of exhilaration that is almost physical; and I like the luxuriant, wavy hair of Bacchus and Apollo, and the wreath of ivy, so suggestive of pagan holidays.
So imagination crowns the experience of my hands. And they learned their cunning from the wise hand of another, which, itself guided by imagination, led me safely in paths that I knew not, made darkness light before me, and made crooked ways straight.
Smell, the Fallen Angel
For some inexplicable reason the sense of smell does not hold the high position it deserves among its sisters. There is something of the fallen angel about it. When it woos us with woodland scents and beguiles us with the fragrance of lovely gardens, it is admitted frankly to our discourse. But when it gives us warning of something noxious in our vicinity, it is treated as if the demon had got the upper hand of the angel, and is relegated to outer darkness, punished for its faithful service. It is most difficult to keep the true significance of words when one discusses the prejudices of mankind, and I find it hard to give an account of odor-perceptions which shall be at once dignified and truthful.
In my experience smell is most important, and I find that there is high authority for the nobility of the sense which we have neglected and disparaged. It is recorded that the Lord commanded that incense be burnt before Him continually with a sweet savor. I doubt if there is any sensation arising from sight more delightful than the odors which filter through sun-warmed, wind-tossed branches, or the tide of scents which swells, subsides, rises again wave on wave, filling the wide world with invisible sweetness. A whiff of the universe makes us dream of worlds we have never seen, recalls in a flash entire epochs of our dearest experience.
I never smell daisies without living over again the ecstatic mornings that my teacher and I spent wandering in the fields while I learned new words and the names of things. Smell is a potent wizard that transports us across a thousand miles and all the years we have lived. The odor of fruits wafts me to my Southern home, to my childish frolics in the peach orchard. Other odors, instantaneous and fleeting, cause my heart to dilate joyously or contract with remembered grief. Even as I think of smells, my nose is full of scents that start awake sweet memories of summers gone and ripening grain fields far away.
The faintest whiff from a meadow where the new-mown hay lies in the hot sun displaces the here and the now. I am back again in the old red barn. My little friends and I are playing in the haymow. A huge mow it is, packed with crisp, sweet bay, from the top of which the smallest child can reach the straining rafters. In their stalls beneath are the farm animals. Here is Jerry, unresponsive, unbeautiful Jerry, crunching his oats like a true pessimist, resolved to find his feed not good -- at least not so good as it ought to be. Again I touch Brownie, eager, grateful little Brownie, ready to leave the juiciest fodder for a pat, straining his beautiful, slender neck for a caress. Near by stands Lady Belle, with sweet, moist mouth, lazily extracting the sealed-up cordial from timothy and clover, and dreaming of deep June pastures and murmurous streams.
The sense of smell has told me of a coming storm hours before there was any sign of it visible. I notice first a throb of expectancy, a slight quiver, a concentration in my nostrils. As the storm draws nearer, my nostrils dilate the better to receive the flood of earth-odors which seem to multiply and extend, until I feel the splash of rain against my cheek. As the tempest departs, receding farther and farther, the odors fade, become fainter and fainter, and die away beyond the bar of space.
I know by smell the kind of house we enter. I have recognized an old-fashioned country house because it has several layers of odors, left by a succession of families, of plants, perfumes, and draperies.
In the evening quiet there are fewer vibrations than in the daytime, and then I rely more largely upon smell. The sulphuric scent of a match tells me that the lamps are being lighted. Later, I note the wavering trail of odor that flits about and disappears. It is the curfew signal; the lights are out for the night.
Out of doors I am aware by smell and touch of the ground we tread and the places we pass. Sometimes, when there is no wind, the odors are so grouped that I know the character of the country, and can place a hayfield, a country store, a garden, a barn, a grove of pines, a farmhouse with the windows open.
The other day I went to walk toward a familiar wood. Suddenly a disturbing odor made me pause in dismay. Then followed a peculiar, measured jar, followed by dull, heavy thunder. I understood the odor and the jar only too well. The trees were being cut down. We climbed the stone wall to the left. It borders the wood which I have loved so long that it seems to be my peculiar possession. But today an unfamiliar rush of air and an unwonted outburst of sun told me that my tree friends were gone. The place was empty, like a deserted dwelling. I stretched out my hand. Where once stood the steadfast pines, great, beautiful, sweet, my hand touched raw, moist stumps. All about lay broken branches, like the antlers of stricken deer. The fragrant, piled-up sawdust swirled and tumbled about me. An unreasoning resentment flashed through me at this ruthless destruction of the beauty that I love. But there is no anger, no resentment in nature. The air is equally charged with the odors of life and of destruction, for death equally with growth forever ministers to all-conquering life.The sun shines as ever, and the winds riot through the newly opened spaces. I know that a new forest will spring where the old one stood, as beautiful, as beneficent.
Touch sensations are permanent and definite. Odors deviate and are fugitive, changing in their shades, degrees, and location. There is something else in odor which gives me a sense of distance. I should call it horizon Ð the line where odor and fancy meet at the farthest limit of scent.
Smell gives me more idea than touch or taste of the manner in which sight and hearing probably discharge their functions. Touch seems to reside in the object touched, because there is a contact of surfaces. In smell there is no notion of relievo or seems to reside not in the object smelt, but in the organ. Since I smell a tree at a distance, it is comprehensible to me that a person sees it without touching it. I am not puzzled over the fact that he receives it as an image on his retina without relievo, since my smell perceives the tree as a thin sphere with no fullness or content. By themselves, odors suggest nothing. I must learn by association to judge from them of distance, of place, and of the actions or the surroundings which are the usual occasions for them, just as I am told people judge from color, light, and sound.
From exhalations I learn much about people. I often know the work they are engaged in. The odors of wood, iron, paint, and drugs cling to the garments of those that work in them. Thus I can distinguish the carpenter from the ironworker, the artist from the mason or the chemist. When a person passes quickly from one place to another I get a scent impression of where he has been Ð the kitchen, the garden, or the sick-room. I gain pleasurable ideas of freshness and good taste from the odors of soap, toilet water, clean garments, woolen and silk stuffs, and gloves.
I have not, indeed, the all-knowing scent of the hound or the wild animal. None but the halt and the blind need fear my skill in pursuit; for there are other things besides water, stale trails, confusing cross tracks to put me at fault. Nevertheless, human odors are as varied and capable of recognition as hands and faces. The dear odors of those I love are so definite, so unmistakable, that nothing can quite obliterate them. If many years should elapse before I saw an intimate friend again, I think I should recognize his odor instantly in the heart of Africa, as promptly as would my brother that barks.
Once, long ago, in a crowded railway station, a lady kissed me as she hurried by. I had not touched even her dress. But she left a scent with her kiss which gave me a glimpse of her.
The years are many since she kissed me. Yet her odor is fresh in my memory.
It is difficult to put into words the thing itself, the elusive person-odor. There seems to be no adequate vocabulary of smells, and I must fall back on approximate phrase and metaphor.
Some people have a vague, unsubstantial odor that floats about, mocking every effort to identify it. it is the will-o'-the-wisp of my olfactive experience. Sometimes I meet one who lacks a distinctive person-scent, and I seldom find such a one lively or entertaining. On the other hand, one who has a pungent odor often possesses great vitality, energy, and vigor of mind.
Masculine exhalations are as a rule stronger, more vivid, more widely differentiated than those of women. In the odor of young men there is something elemental, as of fire, storm, and salt sea. It pulsates with buoyancy and desire. It suggests all things strong and beautiful and joyous, and gives me a sense of physical happiness. I wonder if others observe that all infants have the same scent Ð pure, simple, undecipherable as their dormant personality. It is not until the age of six or seven that they begin to have perceptible individual odors. These develop and mature along with their mental and bodily powers.
What I have written about smell, especially person-smell, will perhaps be regarded as the abnormal sentiment of one who can have no idea of the "world of reality and beauty which the eye perceives." There are people who are color-blind, people who are tone-deaf. Most people are smell-blind-and-deaf. We should not condemn a musical composition on the testimony of an ear which cannot distinguish one chord from another, or judge a picture by the verdict of a color-blind critic. The sensations of smell which cheer, inform, and broaden my life are not less pleasant merely because some critic who treads the wide, bright pathway of the eye has not cultivated his olfactive sense. Without the shy, fugitive, often unobserved, sensations and the certainties which taste, smell, and touch give me, I should be obliged to take my conception of the universe wholly from others. I should lack the alchemy by which I now infuse into my world light, color, and the Protean spark. The sensuous reality which interthreads and supports all the gropings of my imagination would be shattered. The solid earth would melt from under my feet and disperse itself in space. The objects dear to my hands would become formless, dead things, and I should walk among them as among invisible ghosts.
Book reviews
Disability Ð everywhere in history
A review by Jim Ferris.
Jim Ferris teaches communication arts and disability studies at the University of Wisconsin-Madison.
Despite the somewhat gloomy picture painted in Ragged Edge in January, disability studies is a growing field. More courses are being added to the curriculum -- and more students are taking them. Disability studies majors and programs are arising, from Berkeley to Toledo.
Scholars are starting to use a variety of tools to probe the differences that society calls "disability," and the humanities disciplines are leading the way. The New Disability History: American Perspectives, edited by Paul Longmore and Lauri Umansky, is a shining example of the groundbreaking work occurring across the humanities. Longmore, professor of history and director of the Institute on Disability at San Francisco State University, is no stranger to these pages, both for his work as scholar and as activist. In The New Disability History, he and Umansky, an associate professor of history at Suffolk University, gather 14 essays that begin the work of showing that it didn't take Section 504 and the Americans with Disabilities Act to make disability part of the American scene.
The reason is simple: disability has always been a central presence in American life. "Disability is everywhere in history, once you begin looking for it," writes Douglas Baynton in the book's first essay, "but conspicuously absent in the histories we write." Baynton and more than a dozen other scholars seek to see the past more clearly, employing the tools and methods of history to excavate this hidden presence, to dig away the layers of caked and clotted cultural dirt that have buried for so long the history of the nation's largest minority group.
Why has this history been overlooked so long? Longmore and Umansky offer several possible explanations:
n historians have assumed a lack of primary sources;
n the existential anxiety and fear that disability often evokes has deterred historians
n historians, like so much of society, have viewed disability from a medical perspective, personalizing and individualizing the experience, keeping a medicalized focus on the passive, "deviant" individual rather than on the social structures that mark and exclude disabled people.
But the editors suggest that another set of pressures has been keeping historians from studying disability: the same ideological and political forces that underlie resistance to disability studies programs, including the flawed arguments that disability studies is really identity politics masquerading as scholarship; that disability studies scholarship lacks rigor and validity; and that studying disability the ways we study race and gender will somehow water down the movement toward greater diversity in academia. There hasn't been all that much of a payoff for seeing disability in history.
But it's there when you look.
"The deep excavation necessary to retrieve for the record lives shrouded in religious, then medical, and always deep-seated cultural misunderstanding requires not only massive historical digging," say the editors, "but a conceptual revolution in historiographical thinking." The goal of the "new" disability history is "to join the social-constructionist insights and interdisciplinarity of cultural studies with solid empirical research as we analyze disability's past."
The New Disability History clearly and forcefully makes the case that disability is everywhere in history as in society -- and it shows us some of those places. More important, it sketches out how historians should question disability as a possible factor in everything they do. It shows that the "normal" way of doing history screens out a fundamental aspect of human affairs, and shines a light on ways not to keep making this long-running mistake. Just as race and gender were always there whether any of us saw them or not, disability is everywhere in history -- and everywhere in culture -- and we're missing an important part of the picture if we don't notice.
Baynton looks at the three major citizenship debates of the 19th and early 20th centuries -- slavery, women's suffrage and immigration, Pro-slavery forces, he writes, argued that African-Americans lacked intelligence sufficient to participate fully in society, and that, because of their mental weaknesses, conditions of freedom and equality were likely to make them disabled. Disability arguments were used against extending suffrage to women: they were not fit physically, mentally or emotionally to participate in the give-and-take of politics and their frailty predisposed them to becoming disabled if they were to try. Poor physique and lack of physical development -- and an attendant likelihood of becoming a public charge -- were common reasons for excluding immigrants. Historians, says Baynton, condemn the attribution of mental and physical inferiority based on race and ethnicity, but assume that prejudice against disabled people is somehow understandable and even acceptable.
Our culture is, Rosemarie Garland Thomson says, "at once obsessed with and intensely conflicted about the disabled body." At least for people with visible impairments, "[s]taring is the social relationship that constitutes disability identity and gives meaning to impairment by marking it as aberrant." Photography, with its seeming objectivity, says Thomson, facilitates that objectifying stare. Photos are safe things at which to gape; they invite gaping. This makes photographs ripe for analysis.
Thomson exposes four "visual rhetorics" of disability in photography from the 19th century on: the wondrous -- looking up in awe at the supercrip rock-climbing in a wheelchair, the armless wonder; the sentimental -- placing the viewer above the disabled figure, looking down in sympathy or pity at the suffering victim or the cute poster child; the exotic -- marked by the uninvolved objectification of looking from a distance at "the alien, the strange, and the distant" (from freak photographs to the high-fashion shots of double-amputee athlete and model Aimee Mullins); and the realistic -- seeking to create the illusion of reality, minimizing distance and normalizing difference (documentary and journalistic photos). These four rhetorics, mingled and separate, provide a useful way to analyze the different kinds of looks disabled bodies seem to receive.
The New Disability History is filled with chapters which shine light into overlooked shadows. Catherine Kudlick shows us blind advocates asserting their own perspectives on blind people's education and social roles, disagreeing with each other and with sighted professionals. R. A. R. Edwards considers the impact of 19th-century educator Horace Mann's ideas on deaf education and the struggle between manualists and oralists. Susan Burch describes Deaf resistance during the early 20th-century heyday of oralism and shows how deaf schools served as centers of cultural memory; Hannah Joyner considers a slaveholding North Carolina family's negotiations over the autonomy of one of its Deaf members during the Civil War.
The period from around 1880 to 1930 was a watershed; both attitudes and policy toward disabled people shifted. Many of the book's essays focus on this time: veterans' benefits, treatment of disabled workers, the development of rehabilitation and the rise of orthopedics; the politics of "civic fitness" as it played out for Helen Keller. The 20th century gets attention as well: essays explore disability and motherhood in two "mercy killing" cases in the 1930s and the development of egalitarianism in the Blinded Veterans Association. Richard Scotch reviews the century's U. S. disability policy.
As Baynton puts it, disability is "a fundamental element in cultural signification and indispensable for any historian seeking to make sense of the past." It is past time, he says, to bring disability "from the margins to the center of historical inquiry." The New Disability History does exactly that.
The changing 'orature' of ASL
A review by Raymond Luczak
Raymond Luczak is the editor of Eyes Of Desire: A Deaf Gay & Lesbian Reader (1993, Alyson) and author of St. Michael's Fall: Poems (1996, Deaf Life Press). Website: http://www.raymondluczak.com.
Deaf American Literature: From Carnival to the Canon, by Cynthia L. Peters Gallaudet University Press, 2000. 218 pages, hardbound, $55.
As a Deaf writer, I have always pondered the question of whether literature by Deaf people, whether created in American Sign Language -- ASL -- or written in English by Deaf writers, was comparable to the literature created by hearing people. Deaf American Literature: From Carnival to the Canon attempts to answer this difficult question.
Peters looks at how carnivals, starting in the Middle Ages, brought people together regardless of social standing, and examines the ways in which many oral works created for carnivals eventually gave way to literature. When the Deaf community gathers together to share their ASL works, whether in public or just among themselves, she says, they are part of that long-forgotten tradition.
Because ASL is not written, the issue of "orature" (oral literature) as a form of "written" literature becomes paramount. The increased use of video to capture ASL, in the same way that a traditionally oral tale is finally recorded on paper (think of Homer's Odyssey), allows for a growing awareness of ASL as a truly sophisticated language that transcends hands alone.
Peters's in-depth look at how orature gradually evolves into literature is right on the mark; in fact, it is happening with ASL today. As more and more ASL poets and creators turn to digital video and its increasingly affordable computer-editing systems, the best of ASL literature will hopefully be "captured." ASL orature as we know it will evolve into something else: literature that can be studied and appreciated in the same way that written literature is.
The orature of ASL is changing rapidly. The Web seems to be becoming that electronic Deaf carnival where surfers, regardless of location, can share their experiences through Web-enabled short films using sign poems and dialogue. Longer-form videos are becoming possible online as well, as more and more people turn to broadband for faster Internet access. Yet Peters fails to discuss the Web altogether.
Still, as a critical analysis of literature created by Deaf people, this book is quite informative. Peters explores those deaf American stage plays that are fitting into the bigger picture of the theatrical experience by taking into account the duality with which we live as Deaf people living in a hearing world, by making information accessible to all through voice and sign interpretation.
Translating from English into ASL is a genuine art form. Peters has missed an opportunity by failing to discuss how ASL can actually improve on English onstage and celebrate Deaf pride by reveling in its sheer power. Many deaf theater companies, lamentably, do not produce original plays by deaf writers. But the opportunity to see ASL made stronger as a language through masterful ASL translations of great spoken-language plays should never be missed.
Good ASL translation of Shakespeare can enable the signing audience to discover new things, things that they've missed from only reading the text. Those who sign Shakespeare well offer a very different style from "street" ASL or the English-inflected signing of those who learned ASL later in life. But the signing dialects that come into play when Deaf people gather are barely mentioned in Peters' book.
Peters' chapter on ASL poetry is scintillating, though. Increasing numbers of up-and-coming poets are learning the new traditions of ASL poetry and using these traditions to develop their own works, and Peters does a good job of reporting on them. I was already familiar with Clayton Valli, Patrick Graybill and Ella Mae Lentz, but Peters has introduced me to more new ASL poets. I wish the book could have been accompanied by a video anthology of their works; even a no-frills videotape (or DVD) edition would have made Peters's insights into ASL poetry that much clearer and more immediate for the signing-impaired.
Peters's survey comes up seriously short by excluding discussion of nonfiction by Deaf people. There is scant mention of autobiographies and memoirs by Deaf writers; surely their works should amount to something! Given the ever-broadening -- and never-ending -- discussion of what constitutes "literature" these days, it seems far too restrictive to exclude Deaf people who write essays, novels, poetry, and memoirs that go beyond deafness itself and look at the larger picture of the five W's of our being as a people and a linguistic minority, both among ourselves and out there in the big hearing world. True, Douglas Bullard's approach to conveying how Deaf people "talk" in his novel Islay is totally unique (Peters refers to Islay as "The Deaf American Novel"), but must it bear the burden of being the only novel that focuses on the culturally Deaf experience?
The problem with a book of this nature, at this point in time, is that in order to give a more accurate sense of the Deaf experience in literature, one requires more Deaf creators sharing differing viewpoints, which is what would normally happen in a carnival. Deafness is like sex: There are no black-and-white boundaries for deafness (or sex), but many would agree that clear communication (it's no secret that the best sex is achieved through communication between the partners) is essential to one's sense of being.
Some deaf people may feel intimidated by the flurry of ASL signing; others may be hard-of-hearing and embrace ASL in all its beauty. Still others, born deaf and forced to learn speech, do not learn ASL until they find their kind after leaving home; they may never be totally accepted by those who consider themselves the arbitrators of Deaf culture. Some even hate being deaf, filled with anger toward the Deaf people who fight for their rights. At the expense of celebrating Deaf culture, this book ignores this spectrum of deafness.
Once we have amassed a greater amount of literature, fiction, poetry, ASL DVDs, essays, digital video features, memoirs, and so forth, created and written by Deaf people (hopefully in the near future), it would be worthwhile to revisit Peters's views of what constitutes "Deaf Literature" to determine if they are still relevant. As language and its people change irreversibly over time, so does their literature and its boundaries.
Relationships fraught with pain and pleasure
A review by Anne Finger
Anne Finger is the Fiction/Poetry Editor of Ragged Edge magazine.
A Protocol for Touch, Constance Merritt, University of North Texas Press, 2000. 80 pages, paper, $12.95 (Winner of the Vassar Miller Prize in Poetry).
Don't judge a book by its cover," my mother used to say. But we wouldn't be wrong to judge Constance Merritt's amazing first book of poetry by its cover. The cover art -- Jonathan Green's Bathing shows two Black women in an open field, holding white bedsheets spread open to protect the modesty of a third, lighter-skinned woman -- is rich in both texture and ambiguity, like the text within. We wonder at the relationships among the three women: are the two holding up the sheets servants to the one in the middle? Sisters? Is it merely an accident of light that throws the woman in the center's racial ambiguity into relief? In the background a field of red poppies and a stand of green trees in the further distance echo and confound questions about blackness and whiteness.
In her poem, "Woman of Color," Merritt takes that familiar phrase and delves inside it, pulling out the Biblical coat of many colors, which "though long/Since rent and soaked in blood, dried and decomposed -- /Arrives through the long centuries over/Sea and land, the unexpected birthright/Of this particular girl." In the rushed naming of colors ("Blue of midnight, cerulean, cornflower;/ Sky, navy, cadet, and royal blue; blue/ . . . Dian red, goldenrod and thistle, white. . . .") the poet finds her voice: "And bursting from the deep into the world,/Its fear, its hurt, its roar; she tries her tongue." The "color" in "woman of color" explodes beyond its expected racial boundaries, exulting in the world of color and language, while never losing sight of color's troubled heritage,.
"Cradle Song: A Found Poem" takes questions asked as part of an "intelligence test" used to establish "mental and hereditary illness" for the purpose of determining who should be sterilized. By titling it Cradle Song, Merritt moves those questions ("What is your name?/What are you?/Where is this place? . . . Why do children go to school?/What does it mean to boil water?/. . . What is the difference between night and day?") out of their expected contexts. Reading those words, one can simultaneously imagine them being asked by a doctor with stern posture to a frightened interviewee and hearing them being half-sung, half-spoken to an infant being rocked in a cradle. The enormity of the loss -- of the hundreds of thousands of empty cradles which resulted from Nazi forced sterilization -- becomes palpable.
In "Etude for Memory and Guitar" (originally published in The Disability Rag), Merritt mixes excerpts from her medical chart with memories of life in an institution. Here, as in much of her work, relationships are fraught with simultaneous pain and pleasure. She writes of her "double": with whom she shared a birthday, "less-than-perfect eyes" and the shower "because of the sameness of our race." She and her double chose as their "bosom friends two petite white girls, who doubled as daughters and slaves.
"We had the care of their bodies -- combed their hair and chose their clothes each day. We kept them warm in our narrow beds and beat them in the bathroom after hours."
Throughout A Protocol for Touch, Merritt explores race and blindness, the ambiguities of our connections to each other, in language that is often straightforward while never being plain; and in imagery that makes us see the world anew.
Out of the parentheses and onto the stage
A review by Anne Finger
The Body of Bourne, by John Belluso, had its world premiere at The Mark Taper Forum, Los Angeles, May 26 - July 15, 2001.
Readers of Ragged Edge may recall that in our May issue we re-published an essay by Randolph Bourne, "The Handicapped," which had originally appeared in The Atlantic Monthly in 1911. Bourne has long been seen as a central social critic by progressive thinkers in the U.S. His writings in opposition to World War I, about the role of youth in the development of new cultural formations, and his interest in the non-economic aspects of oppression make him a writer whose work seems prescient of many of today's concerns. However, Bourne's disabilities -- he was "hunchbacked and disfigured," as they say -- have been relegated by most of those who write about him to parentheses, instead of being seen as an integral and important part of his life experience -- and therefore, crucial to understanding his thought.
The Body of Bourne, written by up-and-coming disabled playwright John Belluso aims to change that. And it has an excellent platform for doing so: the play premiered this spring at the Mark Taper Forum, one of the nation's most respected theaters.
One of the motifs running throughout Belluso's engaging and thoughtful play is that the lives of disabled people are not universal constants: they are shaped, as all lives are, by social and economic forces as well as by psychological ones.
Sharing that premise, we really must look at Belluso's work not as a product solely of his personal effort and considerable talent, but as part and parcel of an ongoing effort by activists within the theater world to see disability experience represented on the stage. For nearly two decades, Victoria Ann Lewis has worked with the Taper's "Other Voices" project to nurture disabled actors and playwrights. Belluso was one of those playwrights, and the Taper's awareness of disability issues owes no small part to Lewis's unstinting efforts.
As part of the premiere of the play, a ramp was dedicated which for the first time allows backstage access to the Taper. In a wonderful "unveiling" ceremony lead by Lewis -- itself a piece of theater -- the community that came together over the years to create the change in consciousness which led to the ramp being built slowly revealed the ramp. This not only allowed the playwright (Belluso is a wheelchair user himself) backstage access but permitted several disabled actors to appear in the play.
So, the historical stage set, let us move on to the play itself. The work boasts a cast of fine actors -- notable among them Clark Middleton as Bourne and Ann Stocking in a variety of roles -- and the direction, by Lisa Peterson, shows both verve and wit.
The play is at its strongest at the very beginning, when Bourne narrates his own difficult birth in language simultaneously poetic and sharp. We follow Bourne as he goes through the crises of adolescence, which are made more poignant by Bourne's social isolation. Unable at first to afford college, Bourne sets out to find employment, and is forced to starkly confront job discrimination. Throughout the piece, we see the development of Bourne's thought, and his increased understanding of what it means to be disabled. The focus of the play isn't Bourne's internal dynamic -- although his psychological life is well-drawn -- but rather on an unfolding of a particular moment in American history, and what seeing it from a disabled point of view can add to our understanding of that moment.
The play received a lukewarm review from The Los Angeles Times; the reviewer seemed to want more on "the plight of the handicapped." I think Belluso is to be praised for confounding audience and critical expectations by not offering a life filled with internal sturm und drang about being disabled. Living a disabled life is no walk in the park for Bourne, but this story isn't about acceptance, nor a plea to the audience -- "we're human beings, really we are!" -- it's about a moment in American history.
Belluso and the Other Voices project, along with the others involved in the project, are all to be congratulated on bringing this excellent piece of theater to the stage.
3 poems by Constance Merritt
2 A.M.: The Body as Weaver
The body wants to sleep
Unencumbered by
The bright red yolk of day,
The hungers of its parts,
And the phantom hungers:
Care's bread, the salt of anger,
The name it turns in answer to.
Because the body wants to sleep --
Untouched by light's slow falling,
The pre-dawn house's whispers,
Or its own urges roiling --
And cannot lull the world,
It learns instead to steal,
To weave each thread of sense
into its dream:
The bladder aching full
Become the urgency of sex.
The smoke-filled room only
a dream of fire,
Because the body wants to sleep.
And for awhile it works.
And then the fiction fails.
And then the body wakes.
Coda
A book for the blank bone-house hours
When time weighs heavy on our hands
And chaff like us is burnt away
By sun or borne aloft on winds.
Long use has left the binding weak;
Disuse has left it brittle.
Either way, it is the same.
*
Your hands, once gentle, rifle pages,
Strew cake crumbs, drip coffee stains.
You budget time; you talk of wages;
You leave the book out in the rain.
By your accounts, nothing's changed.
*
The binding gives, the pages scatter
(You turn your hands to other plots) . . .
No matter. Leave them to the winds.
The careful crows will cry them up.
6 A.M.: Meditation: Entering the Mind of Winter
The lamppost is cold only to the touch, but lonely often. For who, hastening home of a winter's evening, reaches deep within his pocket not to retrieve the odd dollar or door key, condom or cough drop, lint or loose change, but rather the unsheathed, unadorned hand?
And rarer still, who claps his fellow on the back or grazes the world in passing?
As for me, I hurry home, uttering no small thanks.
2 A.M.: The Body as Weaver
The body wants to sleep
Unencumbered by
The bright red yolk of day,
The hungers of its parts,
And the phantom hungers:
Care's bread, the salt of anger,
The name it turns in answer to.
Because the body wants to sleep --
Untouched by light's slow falling,
The pre-dawn house's whispers,
Or its own urges roiling --
And cannot lull the world,
It learns instead to steal,
To weave each thread of sense
into its dream:
The bladder aching full
Become the urgency of sex.
The smoke-filled room only
a dream of fire,
Because the body wants to sleep.
And for awhile it works.
And then the fiction fails.
And then the body wakes.
Coda
A book for the blank bone-house hours
When time weighs heavy on our hands
And chaff like us is burnt away
By sun or borne aloft on winds.
Long use has left the binding weak;
Disuse has left it brittle.
Either way, it is the same.
*
Your hands, once gentle, rifle pages,
Strew cake crumbs, drip coffee stains.
You budget time; you talk of wages;
You leave the book out in the rain.
By your accounts, nothing's changed.
*
The binding gives, the pages scatter
(You turn your hands to other plots) . . .
No matter. Leave them to the winds.
The careful crows will cry them up.
Robert Wendland died in July, officially of pneumonia.
A disabled man with severe brain injuries resulting from an auto accident, Wendland had been the focus of a six-year court battle between his wife, Rose, and his mother, Florence -- his wife wanting his feeding tube removed; his mother wanting him to live (see D. R. Nation, January)
Robert had shown symptoms of illness for several weeks, but Rose had forbidden details to be given to Florence; just days before his death; Florence had filed an emergency petition with the court to allow a doctor of her choice to examine her son.
In early August, the California Supreme Court issued its ruling in the case: no; said the Court, the conversations Robert had with his wife before his accident had not established "by clear and convincing evidence" that Robert Wendland would have wanted to die -- Rose could not legally remove his feeding tube to hasten death. By now the point was moot.
Some in the disability movement felt Robert's death had been hastened, anyway -- and worried the ruling was so narrow it would not be useful much beyond this one case. "Our job now is to make sure that the issue does not go away," said Not Dead Yet attorney Amy Hasbrouck.
Stories about the Wendland case are available online from Inclusion Daily at http://www.inclusiondaily.com/news/advocacy/wendland.htm
Death, and lives remembered
I can't help but be struck by the difference between Connie Panzarino's death and Robert Wendland's," says Amy Hasbrouck. Panzarino died a week after Wendland. She was 53. An artist, therapist and activist; she had directed the Boston Self Help Center in the 1980s. "Connie was surrounded by allies in her quest to hang on to her life and her body. She was empowered; was surrounded by love, accord and appreciation of her beauty as a disabled woman. Robert did not have these things.
"Robert is now beyond help. But the real tragedy would be for the discussion of the issues he faced to die with him."
'The work Connie started is never finished'
I met Connie Panzarino at a time when I could barely say the word "disabled" about myself, and there she was, blatantly and flamboyantly calling herself not only disabled but also, oh my god! lesbian! -- during an era when being queer was not cool, and being disabled was something to keep well hidden.
Connie never hid. She couldn't, physically or politically -- so, instead, she taught the world how to embrace, honor, and respect physical difference.
She did it all with tact and a smile. She could be suing you and she'd still smile at you.
When I met Connie I was a chronically-ill walkie in my twenties. Connie was patient with me as I went from a position of walking privilege to disability discrimination, and not in the least happy about it. I was indignant. Connie gave me a place to express that indignation and encouraged me to proclaim to the world what I was learning about discrimination and dykes with disabilities.
The work Connie started is never finished -- but we can continue her legacy. We can be mentors to young people with disabilities. We can slowly and methodically attack disability discrimination on all levels. And in the spirit of Connie, we can do it with a dash of femme flamboyance or butch bravado. Legless, armless, wheeling and walking, we can all be sexy, vibrant beings who love the glisten of a crystal necklace, the lay of a silk tie and the camaraderie that coming together in the fight over social injustice can create.
-- Mary Frances Platt
'Proudly showing our needs'
From the moment of her diagnosis as an infant (with spinal muscular atrophy), she was tortured by the medical care system. First it told her that she was lazy; that she could walk if only she desired. Then it almost let her die by not bothering to treat an ulcer.
In her frequent stays in the hospital over the last few years, medical personnel continually commented on the poor quality of her life -- "wouldn't she be better off dead?" -- and ignored her clear requests regarding her treatment. During her last stay, she was told that if she were to have a brain tumor, they wouldn't operate on her anyway. Over and over, she was given the message that her life was less valuable.
By always acknowledging the costs of this oppression -- the anxiety, insomnia, nightmares, palpitations, getting sick from not being able to urinate or move her bowels, never being able to drink water, abusive attendants, let alone being denied the right to work for over a decade -- Connie validated every disabled person's experience. She knew, deep into her bones, that validation must precede action. For her that also meant proudly showing our needs. In her fight to get attendant care while working in the 1970s, she had a newspaper photographer take pictures of her being transferred out of bed in a Hoyer lift.
"Some of my friends with disabilities were appalled that I allowed myself to be shown to the able-bodied public in a vulnerable, dependent position," she said, "because they felt that it would increase oppression by encouraging the stereotype of the 'helpless cripple.' I believed that in order to have our needs met we needed to stop trying to 'pass' in the able-bodied community and pretend that we were self-reliant because that fed the misconception that attendant care was a frivolity rather than a necessity for life support."
For Connie, needs were simply needs, and had nothing to do with the value of life. She never, ever, doubted the value of hers. As someone who acquired his disability, I'll always be grateful to her for this fierce certainty.
-- John Kelly
The Media Edge:
CBS Sunday Morning read Ross Sweat's comment about Jerry Lewis on the air . . . part of it, anyway
At least they got my name right
By Ross Sweat
Ross Sweat, former director of the New Mexico Dept. of Vocational Rehabilitation, currently teaches psychology at the College of the Southwest in Hobbs, New Mexico.
The CBS program "Sunday Morning" is a ritual at our house. We even watch when the subject is distasteful, as it was when the show profiled Jerry Lewis.
I've used a wheelchair for over 35 years, and I got tired of Jerry Lewis a long time ago. I don't watch his movies, and I avoid TV programs that include him, especially that annual celebrity dip into the murky waters of pity and degradation known as the Jerry Lewis MDA Labor Day Telethon. When we saw that Jerry Lewis was to be the subject of a segment, my wife and I steeled ourselves to be ready for anything. We were expecting heaping buckets of the gooey praise that America's favorite fund-raiser usually gets from the media.
To our surprise, the segment wasn't bad. It was mostly about his comedy and his career. His feel-good, do-good humanitarianism was being downplayed and I was even starting to have twinges of guilt that I'd let my personal dislike for his fundraising techniques stop me from recognizing his genius as an entertainer.
Then the interviewer moved onto the Telethon, and Jerry Lewis became . . . well, Jerry Lewis, the one I had expected all along.
"I'm telling people about a child in trouble! If it's pity, we'll get some money. I'm just giving you facts! Pity? [If] you don't want to be pitied because you're a cripple in a wheelchair, stay in yer house!"
The only shock was that he said it out loud, and to a network television audience. I've known for years what he thinks -- I just never thought he would be so blatant about it. I didn't even get angry. I laughed, surprised at his honesty.
I truly expected CBS to publicly distance itself from Lewis' statement. But the next edition of Sunday Morning aired without mention of Lewis or his comment. CBS's failure to at least acknowledge the political incorrectness of such a statement by a public figure angered me. And over the last week, his statement had worked on me as well: I had begun to feel personally assaulted and insulted by Lewis.
I resolved to tell CBS about it.
I sent them an email message. "Surely," I wrote, " you've been inundated with messages on Mr. Lewis' ignorance and arrogance when he said, in effect, that people with disabilities are only fit for pity if they dare go out in public. Sure, you've apologized, sort of, and so has Jerry Lewis, although not publicly. Why don't you atone for your failure to question his statement at the time by doing a story on the opposition to him that has existed for years prior to the next Telethon? Really, it would be simple justice, and the opposition has a point-of-view and a story to tell."
I'd told them they were wrong. I hoped my message would be one of so many that they'd have to respond. I thought my suggestion about giving those who oppose the methods of the Telethon an equal chance to speak had real merit, and I felt the tone of my message was reasonable.
A couple of weeks passed. One Saturday afternoon in late June, a staffer from CBS News Sunday Morning called: my email message would be read on the next day's program. How did I pronounce my name? they asked. "Like perspiration," they were told.
I called my mother-in-law and a friend to brag before the rational part of my nature supplied that old feeling: "how-they-gonna-get-me-this-time"? What had I said, exactly? How many ways could it be used against me? I re-read the email message I'd sent and decided not to send it on to all my friends: If the meaning of my message was about to be perverted, I'd just as soon as few of my friends saw it as possible.
That next morning, when the moment came, Charles Osgood said my name and identified my hometown with barely a hitch. Then, he read most of the first sentence of my message. It served only as a lead-in to that "some-of-my-best-friends-are-crips-and-I-respect-them-very-much" apology that I assumed MDA had put out for their Superstar.
It happened so fast that my reaction was to question exactly what I had heard. Obviously, someone at CBS had liked my paraphrase of Lewis' original tirade, even though they had Osgood explain that it wasn't exactly what Jerry said.
I was disappointed that they'd ignored my real message. I guessed my suggestion that the other side of the story deserved an airing wouldn't be explored. Maybe I should just be satisfied that my words were used as the counter-culture counterpoint to the clichŽs of his "apology".
Except -- I'm not satisfied.. Being used by CBS to show that not everyone loves Jerry just isn't enough. I keep looking for some deeper truth.
Part of it is that thing about "Jerry's Kids." That name has always attached itself to everyone who uses a wheelchair. The focus of the Telethon is the wheelchairs and the people in them who are described over and over again as "Jerry's Kids." One, I remember from years ago, was a man in his 50's, the vice president of an airline, and one of "Jerry's Kids."
The Jerry Lewis interview on CBS Sunday Morning had really been about a 9-year-old boy in an old man's body. Maybe it was the 9-year-old Jerry Lewis who had said, ". . . cripple in a wheelchair . . .". Maybe it was the child in the role of angry parent, reacting harshly to "his kids" who wouldn't understand and act "right" in light of the righteousness of his intent. It just might have been, too, that his outburst had little to do with wheelchairs, and a lot to do with the pettiness of a perpetual child.
The actions of both CBS and Jerry Lewis reflect the kind of attitudes that have always been common in mainstream society. These attitudes are the source of the ancient tradition of giving alms to the "unfortunate ones" on the street corner or at the city gates.
Muscular dystrophy -- or any other condition that results in visible signs of functional limitation, like using a wheelchair -- is scary. The donations given in response to the frightening reality that such things can happen to anyone are intended to appease the fates and buy protection. Like the ceremonial killing of the fatted calf upon the altar, it is intended to purchase insurance against such a thing happening to us.
The pity parade Jerry Lewis leads depends on such fears for its very existence. Being the leader of the parade does not exempt him from these emotions. It may be that his own fear led him to participate in the Telethon in the first place, and now keeps him performing his role in it. Certainly, something compulsive and unhealthy must have been behind that unprovoked attack Lewis made on that unforgettable "Sunday Morning" against those whose only crime is using wheelchairs.
We wheelchair users know something that Jerry Lewis and the rest of the nondisabled world need to learn: The idea that wheelchairs are confining and that those who use them are "bound" to them is wrong. We are liberated by them, loosed from confinement. With wheels under us, with jobs to pay our way, we can do wonders.
We must find a way to get Jerry Lewis and those who share his point of view to see this truth.
ON EDGE
'Disabled Lives': A Commentary
By David Pfeiffer
David Pfeiffer is Resident Scholar at the Center on Disability Studies at the University of Hawaii at Manoa
My partner -- my wife -- and I are mutually dependent. We take care of each other, as do most married couples. I am no more dependent than most people are dependent.
Yet many non-disabled people would describe me as severely disabled and dependent, solely because I use a wheelchair. That is what ethicist Martha Nussbaum seems to be doing in her "Disabled Lives: Who Cares?" in the January 11, 2001, issue of The New York Review of Books, which Cal Montgomery dissected so powerfully in her "Critic of the Dawn" piece (Ragged Edge, May). Nussbaum's discussion of people she calls "severely disabled" reinforces the widespread belief that all people with disabilities are very dependent upon non-disabled people.
Some of us are, it's true; but non-disabled persons are dependent on others as well. Nondisabled people receive "care," too -- sometimes quite a lot of it. If you doubt that, just consider the level of services -- "care" -- which professional athletes receive. If the reader does not know that professional athletes receive services paid for by tax dollars, please take a look at the football and baseball fields and basketball courts built with tax money on which high school and college athletes prepare to become professionals. Pay attention to the amount of tax forgiveness municipalities give professional athletic teams for locating there. The state of Hawaii gives the National Football League two million dollars a year to stage the Pro Bowl here.
Perhaps from ignorance, Nussbaum perpetuates a number of common misunderstandings about people with disabilities. While she notes that many elderly persons do not receive care which "shows respect for their dignity," she fails to note that many persons with disabilities do not receive services which show them respect, either. Nussbaum's discussion of "the burdens on people who provide care for dependents" reinforces the idea that people with disabilities are burdens, with little understanding that the "burden" is caused by the inequality of services, not by the person who's disabled.
This same prejudiced attitude is the basis for philosopher David Gauthier's assertion (noted by Nussbaum) that people who have "unusual" needs -- as they define unusual" -- cannot be a party to any moral relationship and thus cannot be equal to others. It also underlies philosopher John Rawls' statement (also noted by Nussbaum) that society is only for people who can act to one another's mutual advantage. Both Gauthier's and Rawls' reasoning leads one to conclude is that persons with disabilities cannot be free, equal, and independent.
Although one can observe that people with disabilities are neither free, equal, nor allowed to be independent, there is a clear difference between observing our situation and justifying our segregation and forced dependency. None of the three ever note this distinction; they seem not to question the rightness of the status-quo. Gauthier, Rawls and Nussbaum are all making moral judgments about people with disabilities: we have no place in society so we should not exist.
Nussbaum makes an extraordinary statement: "We learn to ignore the fact that disease, old age, and accident impede the moral and rational functions, just as they impede mobility and dexterity." What? Because I had polio 58 years ago when I was nine years old and have used crutches, a cane, and now a wheelchair, "disease" and "age" "impede my moral and rational functions?" Holding a Ph.D. in political science (focusing on public choice), entering my 40th year as a university professor, having over 190 publications to my credit, being a policy analyst specializing in disability issues in the Center on Disability Studies at the University of Hawaii at Manoa, being a past president of the Society for Disability Studies, and now the editor of Disability Studies Quarterly, I would suggest that neither my moral nor my rational functions have been "impeded." I would argue that they have been heightened.
It seems Nussbaum thinks people with disabilities are basically -- fundamentally -- different from people without disabilities. "We forget that the usual human life cycle brings with it periods of extreme dependency, in which our functioning is similar to that of the mentally or physically handicapped throughout their lives," she writes. To Nussbaum, it seems, there are independent people and there are dependent people -- with all people with disabilities being the dependent ones. Yet many non- disabled people I know are quite dependent, in ways many people with disabilities I know never are.
At one point Nussbaum seems to be speaking directly to me: "Take two people, one in a wheelchair and one not. If they are to have a similar level of mobility, a lot more will have to be spent on helping the person in the wheelchair." Hah! I challenge Nussbaum to a five-mile race on the nearest track. Unless she is a marathoner, I shall finish the five miles well ahead of her.
Her statement is pure ableism: she assumes that the status-quo lack of access is "natural" and "right." The present lack of access in our buildings is due to nothing more than policy choices, enacted in today's building codes. If access requirements had originally been included in the building codes, nothing would need to be spent to correct the prejudicial aspects of those buildings which were built to code and made inaccessible in the process.
At one time slavery was "natural" and "right." Later segregation was considered "right." At one time the wife was considered the husband's chattel, his possession. Having made some (but not much) progress in overcoming those prejudicial attitudes today, we are left with Nussbaum's ableism -- that the status-quo of lack of access is "natural" and "right."
Elderly persons should receive care because of their earlier periods of productivity, writes Nussbaum, citing Gauthier; people with disabilities have not had earlier years of productivity to justify services, she and Gauthier both say. Both simply accept as a given that people with disabilities are not economically productive.
Yet this is not true. We are not simply consumers; we are also producers. I know many people with disabilities who work hard, earn good salaries, who contribute to the economy and to society. I know just as many people without disabilities who do not work hard, barely earn any income, and make questionable contributions to the economy and to society. And there are many people without disabilities who are quite rich and make no contribution to either the economy or to society -- people who are themselves economic and social liabilities. None of this has anything to do with being a person with or without a disability. It has to do with bigotry.
Perhaps Nussbaum does not intend to contribute to the ignorance which produces the bigotry which causes questions to be asked about our worth, but she clearly does. These questions about our worth then lead to questions about whether we should be allowed to continue to live. This is the place where Hitler started. Professor Nussbaum must help repudiate this tendency in our society. It is here, and it is growing.
This ends issue 5, year 2001 of Ragged Edge magazine.
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