Table of Contents:
Cover story: Dreams of Home, by Zen Garcia
FEATURES:
Creating Access: Now and for the Future, by W. Carol Cleigh
What's happening to our ADA? by MaryJohnson
Incontinence, by John Kelly
LOST DISABILITY CLASSICS: Address to Humanity by William Belcher
Departments:
Letters: Good cow, edgy smiles, Laguna Honda reservations
News: Judge sues Atlanta transit, HHS nursing home sellout, Kevorkian denied new trial, more
HISTORY LESSONS: Signing the Section 504 rules, by David Pfeiffer
Book reviews: Laura Bridgman, courtship letters, U.S. disability policy in context
OVER THE EDGE: A Modest Proposal by "Peter Stinker
Spokes and Cure by Ed Hooper
Editor Mary Johnson Poetry/Fiction Editor Anne Finger
BOOK REVIEW Editor Kenny Fries Design/Production Publication Services.
Ragged Edge magazine, (formerly The Disability Rag and Resource) Vol. 23, No. 1. ISSN: 1095-3949. Published bimonthly by The Advocado Press P.O. Box 145 Louisville, KY 40201. Copyright 2002 by The Advocado Press. Reproduction without permission of any material in the magazine is prohibited. Periodicals postage paid at Louisville, KY. POSTMASTER: Send address changes to: Ragged Edge magazine, P. O. Box 145, Louisville, KY 40201. Rate for individual subscriptions: $17.50/year; organizational rate, $35.00; international rate, $42.00. To subscribe, send check in U.S. funds to: P.O. Box 145, Louisville, KY 40201. The Advocado Press is a member of the Independent Press Association, a membership organization of independent periodicals publishers in North America.
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Editorial
'Twas the Friday night before Christmas, and . . .
The Bush Administration has underwhelmed us again. "Delivering on the Promise: Preliminary Report of Federal Agencies' Actions to Eliminate Barriers and Promote Community integration" -- the long-awaited report that was supposed to outline how federal agencies planned to carry out last May's Executive Order on "Community-Based Alternatives for Individuals with Disabilities on Implementing the Supreme Court Olmstead Decision" -- is long on rhetoric and short on everything else.
Its release at 7 p.m. on the Friday before the Christmas holidays signaled that the Administration was not interested in the report getting any attention -- and for good reason: it contains nothing of substance. There are virtually no commitments of any sort that would result in people being assured of staying out of institutions. The report, replete with agencies' commitments to "consider" or "propose" or "suggest" or "coordinate" vague sorts of "activities" -- is online in text form at http://www.hhs.gov/newfreedom/presidentrpt.html
"In the near future, we will present you with the individual reports of the agencies involved in carrying out your Executive Order," says the transmittal letter to Bush from HHS Sec. Tommy Thompson, pretty much an open admission that this report contains . . . nothing.
"This report sets forth a summary of the actions that federal agencies propose to take in the following key areas: health care structure and financing; housing; personal assistance, direct care services and community workers; caregiver and family support; transportation; employment; education; access to technology; accountability and legal compliance; public awareness, outreach, and partnerships; income supports; gathering, assessment and use of data; and cross-agency collaboration and coordination," says the report.
Slogging through the document, we learn that HHS "will examine the costs and benefits of a statutory change to establish a state option enabling presumptive Medicaid eligibility" and "will develop a multi-pronged strategy to address quality of care issues in home and community-based services"; that HUD "will provide technical assistance to local Public Housing Authorities (PHAs) to expand knowledge of need" and "will coordinate efforts with DOJ to devote substantial resources to investigations and enforcement actions"; the Dept. of Transportation will help "transportation providers" purchase "specialty vans" and that the Dept. of Labor's Office of Disability Employment Policy "will initiate an Olmstead Community Employment Initiative, developing and implementing a coordinated strategy to ensure that all DOL policies and activities fully address the employment and training needs of people with disabilities who are at risk of institutionalization."
Right. There will also be outreach, awareness, training, coordination -- all the usual buzzwords, full of sound and fuzziness, signifying nothing. zzz zzzz.
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Letters Department. 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.
'Cash Cow' kudos
Laura Hershey's "Confessions of a Cash Cow" (November) is one of the most concise, moving, and thought-provoking article on the subject of home-based services I've ever read. Hershey is speaking for the thousands that have suffered years of institutionalization, and those who face the threat of it. As a fellow writer of disability issues, I have to say that she has literally taken the words out of my mouth and has spoken them much more eloquently than I ever could.
I pray this essay is seen, read, and understood by those who hold our lives in their hands -- and give it back to us.
Barbara McKee
Albuquerque
I hope our consumer-directed pilot project will more than live up to Laura Hershey's expectations. If any of your readers want to contact us about the program, they can reach me at 303/866-3358, by email at william.west@state. co.us or they can visit the project's web page at http:// www.chcpf.state.co.us/cdas/cdasindex.html.
Bill West, Administrator
Consumer Directed Attendant Support
CO Department of Health Care Policy and Financing
1575 Sherman St.
Denver, CO 80203
Edgy matter
Cal Montgomery's "A Very Grave Matter" (November) pushes the envelope of edgy. She certainly can string words together and make them sing. The tongue-in-cheek humor was a bit too wry, too close to the bone to make me laugh -- but I did shake my head and smile. Heaven knows, when we are not busy with our new job of providing inspiration, we can use a smile or two.
And while I'm throwing compliments around, let me add kudos for your new book, To Ride the Public Buses: the Fight That Built a Movement. What a joy to see our history! The photos by Tom Olin and collection of articles reminded me that something wonderful has grown out of these many years of activism.
Janine Bertram Kemp
Washington, DC
Readers can use the ad inside the front cover to order copies of "To Ride the Public's Buses" -- or order online at www.
advocadopress.org. -- editor.
Laguna Honda --
another perspective
I agree with most of ADAPT's complaints about Laguna Honda (see page 18) but have a major concern with how the protests are organized.
Laguna Honda is refuge, shelter, and home to many voiceless, disenfranchised disabled people whose concerns are not part of this protest. Some of these disabled people are formerly homeless, long-time substance abusers, mentally ill, undocumented residents and others who find the accomodations at Laguna Honda an oasis. For some, Laguna Honda is the best thing that ever happened to them and it keeps some San Francisco residents from otherwise dying alone on the streets.
Of course it's a horrible archaic alternative for those better off in the community -- if there were housing and resources for them. The point is, there aren't -- and the situation grows worse by day. If the money the taxpayers voted on to rebuild Laguna Honda were devoted to creating those alternatives it wouldn't make a dent in the most expensive housing market in the country. For those few who might benefit, many more of the disabled community who aren't fit or able to live in community settings would be without hope. Low-income and moderately-priced housing in San Francisco is sparse. Since Mayor Willie Brown has been in office, the low-income African American community has been reduced by 20% due to housing projects being torn down. It remains to be seen how many will actually return.
We are also losing group homes for the developmentally disabled which results in native San Franciscans forcibly relocated away from their families and community to places like Fresno and Modesto where the real estate market is cheaper and their low-paid service providers can afford to live.
My concern with ADAPT's well organized approach to this valid and critical concern is the targeting of the only remaining public institution left to house some of the disabled communty rather than the housing market itself. Yes, they've made excellent points and brought public attention to this compelling problem, but it will not affect the housing and labor market. In a city that is hostile to the homeless and the poor it is significant that the voters passed the bond to rebuild Laguna Honda at all. Why not join forces with other coalitions targeting HUD, housing and related labor issues which would create the environment where disabled people had real choices for their individual situations? Targeting one of the last places left that the most disenfranchised of the disabled community has left to go to is divisive, misleading and further disenfranchising to some of San Francisco's and the disabled community's most vulnerable memebers.
Mia S. Kite (disabled, living in the community, and in support of choices)
San Francisco
To read more about ADAPT's Laguna Honda protest this fall, read the cover story, Dreams of Home. Editor.
Correction: The New Lisbon Developmental Center ("Institution still not safe," D.R. Nation, 2001, No.6) is in New Jersey, not Pennsylvania. zzz zzzz.
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Department: News from the Disability Rights Nation
Fresno allocates $$ for curb cuts in wake of death
In the wake of last March's death of disability activist Elias Gutierrez, hit by a motorist while traveling in his wheelchair in the street due to Fresno's lack of curb cuts (See "Mean Streets," Ragged Edge 2001, No. 4), the Fresno City Council now requires that "in all future resurfacing of streets and repair of sidewalks, curb cuts will be automatically installed if not in place" -- and has allocated an additional $500,000 for installing curb cuts, "bringing the total amount allocated for this ADA-related requirement to more than $800,000 for the current fiscal year."
-- Information provided by Ed Eames
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Atlanta Crips Sue Transit System
Judge Stephanie Davis never thought she'd find herself on the other side of the bench, particularly in the plaintiff's chair. As a Fulton County Magistrate Judge, Davis is used to parceling out justice -- not being the one who seeks it. But when a bus driver for MARTA, the Atlanta-area public transit system, recently refused to help Davis, who has quadriplegia, deposit her fare in the slot, she said, "enough is enough!"
Davis joined five other plaintiffs in a class-action suit filed in late November against the Metropolitan Atlanta Rapid Transit Authority
"It is not unusual for me to encounter buses with wheelchair lifts that don't work, or drivers who don't know how to operate the equipment, and to experience unacceptable delays in service. But when a paratransit van driver recently refused to help me deposit my fare because he wasn't supposed to handle money, I was shocked," said Davis.
The lawsuit is the first formal action taken against MARTA for ADA violations; it's being handled by the Atlanta's new Disability Law and Policy Center.
"Visually impaired riders constantly encounter drivers who do not announce stops," said DLPC's Joshua Norris, "and people who use wheelchairs are frequently denied service because buses have broken equipment."
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Administration's Nursing Home Initiative Outrages Activists
"Selling out to nursing home industry," is how American Disabled for Attendant Programs Today's Bob Kafka has characterized HHS Secretary Tommy G. Thompson's announcement in mid-November of "a pilot program to help people covered by Medicare and Medicaid find the best nursing homes for their needs."
DC area ADAPT members protested outside the Nov. 19 press conference at an Alexandria, VA. nursing home.
"Older advocates as well as people with disabilities want to change the institutional bias" to in-home services, says Kafka, who called the announcement akin to "Alice through the looking glass.
"Unfortunately the President's Olmstead Executive Order seems to have had no effect on the strength of the nursing home lobby," he says.
"When will it end?" asks disability advocate Lex Frieden. "In my experience the best way to improve quality in nursing homes is to close them."
Kafka is encouraging "advocates for community services to let CMS Administrator Tom Scully know that this is the wrong direction." Scully's email is Tscully@cms.hhs.gov. Individuals may also contact the CMS press office at (202) 690-6145.
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EEOC Never Funded for ADA Complaints, Says Study
by Dave Reynolds, IDE
The 1990 Americans with Disabilities Act has not lived up to its promise of eliminating discrimination in the workplace, in part because the agency that handles discrimination complaints has not been given adequate resources to do its job., says a study in the Kansas Law Review.
"What we found basically is that the EEOC has never been funded to do thorough investigations of each discrimination complaint," said research leader Dr. Kathryn Moss, a research fellow at the University of North Carolina's Cecil G. Sheps Center for Health Services Research. "The commission, which is responsible for other discrimination laws as well, wasn't funded well enough in the first place, and when the ADA was passed, it got no additional resources."
"What they do with these medium priority charges usually is to send a pro forma letter to an employer saying there has been a charge and to ask the employer to respond to various points," Moss said. "Then, more often than not, they take the word of the employer without a follow-up investigation."
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Voting Access Bill Is Not Good Enough, Advocates Say
by Dave Reynolds, IDE
A bill introduced by Reps. Bob Ney (R.-Ohio) and Steny Hoyer (D. Md.) to require all 50 states to provide polling places that comply with the Americans with Disabilities Act of 1990 and the Voting Accessibility for the Elderly and Handicapped Act of 1984 is too vague and does not go far enough toward ensuring all voters their Constitutional right to cast a secret ballot, say over two dozen disability groups.
"We've had voluntary standards for 17 years," said Jim Dickson, vice president of the American Association of People with Disabilities , "and over 80 percent are still inaccessible."
Most favor another bill from Sen. Chris Dodd (D. - CT) and Rep. John Conyers (R.- MI). For more information on the AAPD's Disability Vote Project, check out the resources at http://www.aapd.com/dvpmain/dvpindex.html
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Court Says Kevorkian Must Stay Behind Bars
by Dave Reynolds, IDE
In late November, the Michigan Court of Appeals denied Jack Kevorkian, the notorious "Dr. Death," a request for a new trial.
Not Dead Yet applauded the appeals court's decision.
"Kevorkian is a serial killer of disabled people and should stay in prison for the full term of his sentence," said Not Dead Yet's Carol Cleigh in a press statement. "Allowing him freedom would be an insult to disabled people everywhere."
In 1999, Kevorkian was convicted and sentenced to prison terms of 10 to 25 years for second-degree murder and seven years for delivering a controlled substance. The crusader for "physician-assisted suicides" has claimed that he "assisted" more than 130 people to die. He was finally stopped after he sent a video-tape of the "mercy killing" of Thomas Youk to the television news magazine "60 Minutes" for national broadcast.
For past stories and related resources on Kevorkian and his link to people with disabilities, go to this Inclusion Daily Express webpage: http://www.inclusiondaily.com/news/advocacy/kevorkian.htm
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Sex Abuse Rampant at Schools for Deaf Kids
by Dave Reynolds, IDE
Hundreds of deaf children across the country have been physically and sexually assaulted by staff members and fellow residents in taxpayer-funded residential Schools for the Deaf in recent decades -- yet neither state nor federal authorities have stopped it -- or even acknowledged it. That was the conclusion of an investigation by the Seattle Post-Intelligencer in November. The story can be read online at http://seattlep-i.nwsource. com/specials/deafschool/
Data compiled by the paper showed that 160 sex-related incidents were reported at the state-run Washington School for the Deaf in Vancouver in just the last three years. The story is similar in facilities from Oregon to North Carolina.
The problem has been made worse by the fact that many deaf people and parents of deaf children were reluctant to publicly criticize these institutions for fear that they would be shut down. Some say it is the best place for these children to experience being around other deaf people.
"If we had a school system for hearing kids like this, there would be an uproar," said Donna Mertens, an education professor at Gallaudet University.
Advocates want the abuse to stop -- and they want apologies.
Last spring the governor of Maine issued a formal apology to people who were abused as children at the Gov. Baxter School for the Deaf -- 20 years after their stories of beatings and rapes were substantiated -- and is following up on that apology by compensating those victims, some of whom are now in their 50s and 60s.
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'Better Dead Than Handicapped': Parents Compensated for Lack of Abortion
by Dave Reynolds, IDE
The Cour de Cassation, France's high court of appeals, ruled in late November that the parents of a boy who has Down syndrome should be compensated because he was born.
After the boy, identified in media reports only as Lionel, was born in 1995, his parents sued the gynecologist who had failed to detect the Down syndrome during pregnancy; a court ordered the doctor to pay around $100,000 for medical negligence.
Now, the country's highest court has decided that the $100,000 is not enough and wants the amount increased substantially.
The decision reinforces another French high court ruling a year ago that Nicola Peruche, born with several disabilities, could sue his doctors because they had failed to diagnose that his mother had rubella during the pregnancy (Peruche's parents also claimed that they would have had him aborted if they had known he might have disabilities).
Background on the Peruche case and other "wrongful birth" suits is available online at www.inclusiondaily.com/news/advocacy/wrongfulbirths.htm
End of News Department.
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Creating Access -- Now and for the Future.
By W. Carol Cleigh
Carol Cleigh, co-founder of the Suburban Access Squad, is Development Coordinator at the Progress Center for Independent Living and serves on the national board of Not Dead Yet.
I haven't done a survey, but I assume that most law schools teach students about the Americans with Disabilities Act and other disability rights laws. I imagine that most lawyers know
that such laws exist and where to look up the regulations. Most, however, don't give students practical experience representing people with disabilities, nor do they give them access to disability-rights advocates. Very few young lawyers graduate with the experience of having made a place accessible.
In 1999, Steven Greenberger founded the Disability Rights Clinic at DePaul University. The clinic has the dual purpose of representing disabled people on a pro bono basis (free) and of training young lawyers in the hope that they will devote time to disability rights law after graduation.
The 20 to 25 students who have gone through the program started with the basics: ADA Title III, its regulations and the ADA Accessibility Guidelines -- the ADAAG -- are required reading. But most of their training comes from handling actual cases. They work closely with Prof. Greenberger, but they do all of the job of preparing and presenting the case. Working in this environment provides experience that law students couldn't get any other way. It certainly provides more depth of understanding of disability rights law, and why it is needed, than they could get any other way.
For the disability community, the clinic is a major advantage. It gives us a powerful tool to make businesses comply. It also gives us hope that in the future we'll have a lot more attorneys who understand the ADA.
In less than three years, the clinic has made 25 to 30 places accessible, most of them places that a specific disabled person actually wanted to use -- and now can. Most of the clinic's cases come from people with disabilities filing complaints. A student investigates the complaint, but very few are rejected as unfounded. Most are clear violations of the ADA.
Once a complaint is confirmed, the student looks for a cause of action -- that is, determines which specific regulations were violated. They may also research the property to determine who is responsible. Research may also be needed into specific case law -- that is, to find out cases that have already been decided in court and have created a precedent. Finally, they strategize with Prof. Greenberger to decide what action to take.
Prof. Greenberger says that although they are under no obligation to send a letter to request compliance, they often do so if the business has not been made aware of the problem by direct complaints and is not a national chain. Some businesses correct the problem when they receive the letter. Some ignore the letter, and others have ignored repeated complaints, often over several years, from the client. These businesses are sued.
The clinic also does surveys in poor neighborhoods looking for violations, believing that it is particularly important to get violations corrected in neighborhoods where people with disabilities have little choice of stores to patronize.
Although start-up funding was obtained from DePaul University's general legal clinic, the Disability Rights Clinic has been self-supporting almost from its beginning. It is, however, a very lean budget. Most of the costs consist of filing fees ($150 to file a federal lawsuit), paying court reporters for depositions, and paying transportation expenses. Since damages are not available under Title III, the clinic's only source of support is winning cases and obtaining legal fees from defendants.
The Disability Rights Clinic has never lost a case. Prof. Greenberger acknowledges that most settle because the violations are so clear-cut that defendants have no argument to make. Prof. Greenberger also says that it's "great to be able to do some important, if riskier cases" since no one is dependent upon the clinic for a living.
Seeing our work bear fruit -- a ramp built or Braille menus made available -- creates a sense of satisfaction and fulfillment. It lifts my spirits every time I go by a place I had a hand in making accessible, and even more to see someone I don't even know using the access I helped create. I hope attorneys who work with us feel the same satisfaction. I hope that many will dedicate at least some of their time to creating that satisfaction for themselves and others through long and prosperous careers. I also hope that other law schools will decide to give their students similar opportunities. zzz zzzz.
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What's happening to our ADA?
by Mary Johnson. Mary Johnson is editor of Ragged Edge magazine.
Our federal courts, and the Supreme Court, are slowly eviscerating our Americans with Disabilities Act.
Ten years ago this January 26, the Americans with Disabilities Act's public accommodations and services requirements took effect. Businesses were supposed to be ready by then to open their doors to people with disabilities -- entrances ramped, TTY machines available at hotels, Braille menus at restaurants. Yet today, a decade later, a trip down any neighborhood street will tell you that most small shops and restaurants remain inaccessible to people with disabilities.
People with disabilities continue to have as high an unemployment rate as they ever did -- seven out of 10 people looking for work never get it, even though it's been almost a decade since the law's employment provisions took effect.
Instead of the ADA changing the way U.S. companies do business, our federal courts are trying to changing the law -- whittling it down, reining it in, eviscerating it. In coming months, the ADA as envisioned by the 1990 U. S. Congress that passed it into law may become not much more than an empty shell.
What happened to the Americans with Disabilities Act that the disability rights movement was so proud of?
Legal observers worry most about what they call the "fallout" from last February's Supreme Court ruling in the Garrett case that state employees could not use Title I of the ADA to sue their state employer for money damages in federal court.
The law's entire Title 2, requiring nondiscrimination on the part of state and local governments, is at risk as a result of the Garrett decision, they say.
Ironically, one of the disability rights movement's biggest ADA wins in the Supreme Court came in a Title 2 ADA case -- Olmstead v. L.C., decided in June, 1999 -- in which the Supreme Court said that people with disabilities have a right to receive services in the most integrated, community-based setting appropriate to their needs.
As a result of the ruling, many states, pressed by ADAPT activists and others, have begun to move money from institutions and nursing homes into in-home services.
"So much good has happened since the Olmstead decision," says Harvard Law School's Sam Bagenstos. "It would be terrible if that were cut off in its tracks." But he and others say there's a real risk of that if the Supreme Court takes a Title 2 case testing the constitutionality of the law. And those we talked to say it's only a matter of time before that happens.
A group of conservative judges and attorneys -- referred to as "federalist" -- will not be happy until they win a Supreme Court case saying the law was an unconstitutional over-reach of Congress's power. In the Garrett decision, the Court did say that -- but in only a narrow sense -- related only to the law's Title I, and involving only state employees.
Courts are going after the ADA's predecessor as well. The 8th Circuit Court of Appeals (covering the states of Arkansas, Iowa, Minnesota, Missouri, Nebraska and North and South Dakota) ruled recently that Section 504 of the Rehabilitation Act was unconstitutional, based on the same reasoning. That they later rescinded the decision does not mean that opponents of disability rights have relented.
While constitutionality issues pose the biggest threat to the ADA, the law's reach is slowing being curtailed by a series of cases which restrict who is "eligible" for the law's protections.
In June, 1999, ruling in the cases of Hallie Kirkingberg, Vaughn Murphy and twin sisters Karen Sutton and Kimberly Hinton (referred to collectively as the Sutton decision), the Supreme Court said that people whose "impairments can be alleviated by medication, glasses or other devices are generally not disabled and so do not come under the law's protection against employment discrimination," as the New York Times's Linda Greenhouse put it.
Ella Williams' lawsuit, heard by the Court Nov. 7, has also turned into a case about who the ADA was intended for. Toyota says that Williams, who got carpal tunnel syndrome from working at the plant, has no right to the ADA's protections because she also is not one of The Truly Disabled -- the term "Truly Disabled" being one that conservative justices have been using for some time, and which Toyota is using in its argument.
The Williams case is just another "in a line of cases where the Supreme Court has constricted the scope of coverage under the ADA," says Georgetown University Law School's Chai Feldblum. "When Congress passed the ADA it intended to cover people with a range of medical conditions, including things like carpal tunnel syndrome," she insisted. "The hornet's nest Ella Williams has gotten caught up in has to do the fact that the ADA's definitions are vulnerable to restrictive readings" -- and the court has done that over and over.
"What the courts have said is that because a person's 'impairment' does not 'substantially limit' enough of a 'major life activity,' then they're not disabled under the law.
"It's an absurd way to apply a civil rights law," says Feldblum, "but it's the reality of where we are today."
During the oral arguments in the Williams case, Justice Sandra Day O'Connor insisted that the ADA law was supposed to focus on the "wheelchair bound," not "carpal tunnel syndrome or bad backs!"
O'Connor "clearly misunderstands the intent of the statute; she has a paternalistic, stereotypical perspective," says Ohio State University's Ruth Colker. Perhaps O'Connor intentionally misunderstands the law, Colker suggests.
The Justices' interpretation of who's "disabled" is cutting "large numbers of people with significant disabilities out of the law's protection in a way the people who wrote the law would never have dreamed would happen," says Fordham University law professor Matthew Diller.
"Everyone working on the ADA in Congress envisioned a much larger group" of people than the Supreme Court sees as being covered by the law, Bagenstos agreed. But if the Supreme Court majority sticks to what Toyota is calling the "Truly Disabled," the result "will be far worse than the Sutton decision," says Bagenstos.
Colker says O'Connor's use of "wheelchair bound" is no different than if she were to refer to women as "girls." But O'Connor's language is just the tip of the iceberg. The real problem is what Colker calls "judicial backlash": "the business community has free rein," she says.
"We usually have a system of checks and balances," says Colker, who holds the Constitutional Law chair at Ohio State University School of Law. "If the legislature is conservative, the courts are liberal.
"But right now all three branches of government -- executive, legislative and judicial -- are tilted in the same direction -- to the right. The legislative branch has resisted revisiting the ADA; we have no backstop. The business community has a completely free wheel to take an anti-employee perspective." She calls it "a one-way ratchet."
A well funded and active group of employers' attorneys "is bent on limiting protections offered by the ADA," says Bagenstos. And while disability rights organizations have been involved in these cases, their financial resources cannot begin to match the deep pockets of the legal community that represents the nation's employers. The Bush administration, too, has consistently backed business at the expense of the disabled worker. "In case after case, the Bush Administration has filed briefs taking the side against people with disabilities," says Bagenstos. The president "has a lot of explaining to do if he want's to say he's on the side of people with disabilities."
Although hopeful of wins in the cases now before the court, Bagenstos concedes that "the trend is very bad. The Supreme Court is not generally ruling for ADA plaintiffs." The lower courts are even worse: "Federal district court judges just want to get [disability employment cases] off the dockets as quickly as possible."
The Supreme Court's conservative five-justice majority -- William Rehnquist, Anthony Kennedy, Sandra Day O'Connor, Antonin Scalia and Clarence Thomas -- "have a real distaste for civil rights statutes, and tend to read them very narrowly -- and in a way that's helpful to defendants" -- that is, employers, says Bagenstos. The justices "are concerned with protecting states against Congress's over-reaching and a kind of business laissez-faire attitude.
"The ADA is an enormous challenge to that ideology."
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Other ADA cases:
Two other cases on the Court's current docket also concern the ADA's employment provisions.
On Dec. 4, the Court heard oral arguments in the case US Airways v. Barnett. When Robert Barnett returned to work after a back injury he needed a less physically demanding position; instead, US Airways fired him. An employee who has a disability and who seeks to transfer to another position within the company for which he/she is qualified has a right to that job, says the Americans with Disabilities Act. "The right response is to grant the meaning that the plain words in the law deserve," says Georgetown University Federal Legislation Clinic's Chai Feldblum. (The case is 00-1250 U.S. Airways v. Barnett.)
The Court will also be looking at the case of Mario Echazabal, who sued Chevron. The Americans with Disabilities Act says that "disabled persons should be afforded the opportunity to decide for themselves what risks to undertake," said the U. S. Court of Appeals for the Ninth Circuit, upholding the lower court ruling in favor of Echazabal, whose employment physical had revealed a chronic liver disease (it could get worse, perhaps fatally so, by exposure to the chemicals and solvents used in the refinery, said Chevron). Chevron has said that hiring people whose disabilities may be made worse by their employment would make them "complicit in injury to their employees."
Paternalistic rules that have often excluded disabled individuals from the workplace, said the Ninth Circuit in ruling for Echazabal, and disability rights legal experts say the law's plain meaning was to protect against paternalistic attitudes of employers that would keep people with disabilities out of the workforce. (The case is 00-1406 Chevron U.S.A. Inc., v. Echazabal).
Side Bar:
While the ADA's employment (Title 1) and public services (Title 2) titles are in jeopardy, its Title 3 has seen relatively little restriction from the courts. That's because cases brought under Title 3, the law's public accommodations section, have been comparatively few.
And the reason for that has to do with the way Title 3 was written: Unlike other civil rights laws, the ADA does not allow those bringing lawsuits to receive any "monetary damages."
Typically in civil rights cases, attorneys who win cases receive attorney fees and a portion of the monetary damages awarded in the case; in ADA cases, monetary damages cannot be awarded. Therefore fewer attorneys are willing to take on ADA cases, and those who wish to file suit must find those attorneys and public law projects willing to take on cases with little prospect for financial gain. This is why projects like DePaul University's Disability Rights Clinic (see page 9) are so important.
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Garrett decision says ADA 'overstepped bounds'
On February 21, 2001, the Supreme Court ruled 5-4 in a case called Board of Trustees of the University of Alabama v. Garrett that Congress overstepped its bounds when it decided in 1990 to allow state workers to use the Americans with Disabilities Act to file discrimination lawsuits against their employers. Citing the 11th Amendment, Alabama had argued that Congress does not have the authority to impose upon the states laws such as the ADA -- an argument the Court accepted.
The attorney who argued the case for Alabama, Jeffrey Sutton, is Pres. Bush's current nominee to the federal bench for the 6th Circuit, which covers Kentucky, Michigan, Ohio and Tennessee.
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New item.
Cover story: Dreams of Home, by Zen Garcia.
Zen Garcia, an activist with ADAPT since 1996, writes a monthly column for Disabled Dealer Magazine, from which this article was taken.
San Francisco, Oct. 22, 2001 -- It was just a little over a month ago that America and its dream of freedom for all was threatened by those who hate our lives and liberties. Terrorists may even now still be at work powdering letters with anthrax.
En route to San Francisco to join the rest of ADAPT in protesting for the civil rights of persons with disabilities, I felt an awkward sense of guilt, almost, for challenging the authority of our government in these sensitive times. But knowing that every three minutes someone dies somewhere in an institution against their will -- and that we are discriminated against so thoroughly here in the States -- makes me continue with the work I'm doing. I know there's no reason why it's not me in a nursing home today, other than the fact that I have strong family support and a blessed sense of luck that always seems to provide me with what I need when I need it.
I feel duty-bound to the 2.2 million people incarcerated in nursing homes across the nation. I want hope to be shared with those that are being lulled into physician assisted suicide by those who think life can't be grand for those who live it differently. Perhaps this is the best time to protest -- because now people are thinking about what it is to be an American; to have justice, liberty, and freedom guaranteed by birth here in this great country. Perhaps our nation, focused on those who would challenge our freedom and way of life, will understand our cause and its similarities to their hopes; will understand why we are determined in what we do.
Wherever oppression finds itself stronger than liberty, there will be numbers fighting for freedom that same freedom that was threatened on Sept. 11 by terrorist bombers. America is freedom for all -- unless you become disabled and are housed in a nursing home. Life then becomes a question of policy. Currently, policy dictates that 85% of the American population will die in a nursing home room, many alone. More than anything, I think, they are trying to keep us from public view.
People with disabilities have been taken to the darkest, deepest recesses of some of the shadiest, most nightmarish places known to human history in the name of prescription and treatment. Medicinal abuse was deemed necessary to subdue our peculiarities. They want to keep the freaks out of the neighborhoods, keep the deformed out of the mainstream. We the disabled, according to their rules, are only for the circuses and boarding houses. They want to cure us, or kill us trying. We are not part of the "we the people" mentioned in the Constitution. They don't want us out in the open, even if it costs less for us to be included; they will pay more just to lock us away out of reach of all those that might be "offended." Even if it makes sense, they are afraid to help, understand, take notice, that, yes, we are human as well. We are brothers, sisters, mothers, fathers, and friends -- how can we not want the same things they do?
Day 1 -- Laguna Honda -- The Nation's Largest Nursing Home
Single file, we rolled the perimeter of the Laguna Honda grounds, unable to escape noting how artfully crafted the doors, building, and lawns appeared from the street. Like something out of 'The Shining," the scene played eerily into the mood of low-lying clouds, light drizzle, and harsh wind. A huge beautified warehouse mansion: one did not see the true ugliness until one went around the side: huge buildings, row after row with bars on windows, armed guards at the doors, chain link fence stretching the whole length of the backside. One could tell the place was old, with ghosts haunting its halls and walls.
Inside, the state of Califonia houses 30 people at a time in a one-room ward. At a cost of $400 dollars a day, one could stay in an expensive hotel and order room service every day -- and still not exceed the daily expense the state incurs keeping a person in Laguna Honda.
ADAPT circled the grounds, singing songs of freedom to the people inside. Onlookers didn't know why we protested. Some thought we wanted to make the nursing home more accessible -- until we lined up in front of the entryway holding crosses for the countless people dying in nursing homes. For full effect we spread ourselves wide, as if to let those inside know there was an army on the outside trying and willing to do something on their behalf. People peered down from inside their windowed heights like ghosts.
Day 2 -- City Hall
It's a beautifully warm and blessed day compared to what we endured at Laguna Honda. ADAPT is at City Hall to ask what the hell Laguna Honda is doing in the same community that hatched the independent living movement -- Berkeley is not 50 miles down the road. The city plans to tear down the aging 1,200 bed facility and replace it with with another, this one 1,600 beds, by 2012.
I'm on the east side of City Hall, in my manual chair, right in the middle of the intersection between Polk and McAllister. We have blocked all the intersections. Police units are all around. Few officers seem irritated; most are inquisitive, even supportive. It is early yet, though.
Mayor Willie Brown arrives in a six-car limo motorcade, steps out, takes a look around, sees us gathered at every corner, gets back in his car, and leaves. A few hours later word comes that the Mayor will meet Wednesday at 9 a.m. with 10 members of ADAPT.
Day 3 -- The California State Building
Just one block down from City Hall, we are blocking the four intersections surrounding the California State Building which houses Gov. Gray Davis's office. Police have redirected the flow of traffic two blocks away. I am at the corner of McAllister and Larkin. The weather is pleasant: breeze light, spring warm. Cops are not strong in number, having got used to us, knowing we are non-violent. Like us they are simply chilling, waiting for the conclusion.
We have made five demands of the powers that be: to allow Laguna Honda residents to use Medicaid funds for living in the community; to refuse to use state or Medicaid dollars to rebuild Laguna Honda, or to use any individual's Medicaid funding to put them in Laguna Honda; to develop, by Feb. 2002; a "comprehensive, effective working plan with goals of reducing the number of people in Laguna Honda"; to write to the National Governors' Assn. urging a meeting betweeen NGA and ADAPT on implementing the Supreme Court Olmstead decision, and to meet with ADAPT to "seek alternatives other than institutional care."
At 2:45 a woman in a new VW Beetle tries to ram though our barricade. Things are going sour inside, too; we hear. We are to clear out or face arrest, we're told.
I plan to be arrested. I get my attendants to lift me out of my chair and lay me on the asphalt in the middle of the street, directly in front of the State Building.
It's 5:00 o'clock now, the sun low in the sky. The pace gathers momentum. The streets fill with pedestrians leaving work, police working fast to clear us for evening rush hour. I imagine I see a kindness on the faces of people in the crowd as they mingle with us, learning the facts, trying to understand. They are amazed at our intelligence, organization, and willingness to be arrested.
"I'd rather go to jail than die in a nursing home," I yell, along with the others being arrested. There are 109 of us arrested in all.
It is not a crime to be disabled in America. We're not criminals. Yet as long as choice is not incorporated into long-term care in this country and the world, we will continue to fight, gather, protest and get arrested.
Day 4 -- City Hall again
I am in front of City Hall, rallying with ADAPT. We wipe back tears as we listen to the nightmare accounts of those who have been abused and neglected in nursing homes, memories of losing their kids and families simply because they were disabled. "It's just plain wrong!" echoes through the streets surrounding City Hall. Johnny Crescendo sings his "Tear Down The Walls Of A Nursing Home." Inside, five of our group are meeting with Mayor Brown. Cameras line the steps of City Hall. Reporters are gathering their stories.
A warm clear sunny 80 degrees. Three generations of ADAPT are here -- we are more a family than a loose gathering of friends. There is a sense of camaraderie here that most don't get to experience in the obligations of normal routine. Only when life is on the line and one has no other recourse but to fight (and in fighting find others also passionate in their sense of duty to civil rights) can one understand the passion that drives us. That passion is what creates change. That passion is what you see at every ADAPT gathering, what our members take into their lives and into their communities; it is what inspires others to do for themselves and want more for themselves.
We spend our final afternoon hanging out with friends, sharing memories of past actions and stories of how we got here. It's just a matter of time before we get the Medicaid Community Attendant Services and Support Act through Congress, we say, and all people in nursing homes or in danger of going into nursing homes have the choice to decide for themselves what they want.
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New item.
Lost Disability Classics.
Anne Finger writes,
Just a few weeks ago, I joined with hundreds of
others at a demonstration in San Francisco
sponsored by ADAPT -- American Disabled for Attendant Programs Today -- urging that Laguna Honda, the nation's largest warehouse for disabled people, be shut down and funding made available for independent living. I'm sure nearly all Ragged Edge readers are familiar with the arguments made by ADAPT: that nursing homes are no better than prisons, that
disabled people have rights to live in the community with freedom and dignity.
What we may not be so familiar with is the history of protests against such institutions. It seems that for as long as their have been institutions, there has been outrage about institutionalization. One example is the piece that follows.
William Belcher's "Address to Humanity" was published in Voices of Madness: Four Pamphlets, 1683-1796, ed. Allan Ingram, Sutton Publishing, 1997.
B E L CHE R's
ADDRESS TO HUMANITY:
CONTAINING,
A LETTER TO DR. THOMAS MONRO;
A RECEIPT TO MAKE A LUNATIC, AND SEIZE
HIS ESTATE;
AND
A SKETCH OF A TRUE SMILING HYENA.
And many a plague succeed, and many a woe,
And long, long, long, of Hell the bellows blow.
-- From the Author's Galaxy.
SOLD BY ALLEN AND WEST, NO. 15, PATERNOSTER-ROW;
AND BY THE AUTHOR, AT HIS HOUSE, NO. 9, LOWER
THORNHAUGH-STREET, BEDFORD-SQUARE, LONDON
PRICE SIXPENCE
1796.
Also may be had of Allen and West,
Peace and Reconciliation;
To which is added.
A Letter to Mr. Fox.
Interspersed with Considerations on Universal Suffrage;
on the Coalition of Mr. FOX and Lord NORTH, and the
Propriety of a Coalition with Mr. THELWALL; a Prediction
of Emigration and Depopulation, should not a Repeal
of the late obnoxious Acts and a Reform take place; and
Anecdotes of the unexampled Persecution of the Author,
the subject of the Address to Humanity, &c.
In the Press.
Belcher's Cream of Knowledge,
Skimmed from the Milk of Human Savageness, and
matured in the School of Adversity.
The Soul's dark cottage, batter'd and decay'd,
Lets in new light through chinks that time hath made.
--Waller.
This Work will not be published in periodical
Numbers, but each portion will be in itself complete.
Advertisement.
Should my injuries, of the most crying kind imaginable, of which the following pages are a sketch, be the means of turning the thoughts of men in power to atrocities far beyond words to express (which, through the practices of the law, are not yet at an end respecting me), I shall have the consolation that my sufferings have not been in vain. At all events, sacrificing my feelings to a faint hope of public good, I hope that, without impiety, I may say with Sir John Scott, who has my thanks, Liberavi animam meam; or rather, that it has always been free, and sometimes smiled, even in the bosom of horror.
--W. B.
A Letter to Dr. Thomas Monro.
Sir,
Being, by vour assistance, together with that of another real Gentleman of the Faculty, restored from legal death, and the most insupportable situation possible to a man of feeling, that of imputed, accompanied with the disabilities of real, insanity; and having been advertsed in the news-papers of my provincial residence, whilst I was just as much in my senses, as I am at present, and at the same time furnished one of those papers with a series of essays, &c. &c. after mature deliberation I am induced now to make known some circumstances of my own case, a relation of the whole of which would fill a folio.
After the incredible conduct of a man who, after taking a handsome fee, and making several false promises, doomed me, as far as was in his power, to an entire broken heart; with an outrage to common sense, and the wonder of the Attorney General, who declared it was a d‹d odd thing; though Christian charity forbids a literal interpretation of the term d‹d; after this, I am the more obliged to you, and because, almost the moment you saw me, you, with that intuitive sagacity which is visible in your countenance, pronounced me perfectly in my senses, and, soon convinced that I had given all the proofs of sanity possible to be given, readily consented to give a speedy certificate of it.
Yes, I declare on my soul, that it was impossible to doubt, as no one who knew me did, or could doubt of my sanity; and no one unacquainted with the affair ever thought of my being otherwise. Notwithstanding which, a man, who calls himself the friend of the unfortunate, took money, &c. of me, and resisted all this demonstration; and was, I have reason to believe, privy to a dark anonymous statement to the Attorney General, whether demonstration itself, it could be called no less, was evidence of rny sanity; and whether the restoration of my estate would be the consequence of a supersedeas? Good God! yet for such complication of injustice, treachery, and tyranny, no special Acts of Parliament are enacted, no fine, imprisonment, pillory and transportation provided.
You, Sir, particularly expressed your wonder (wonderful indeed has been my fate) at my being able to settle my mind to the composition of a series of Iiterary works in such circumstances, which I will now explain to you with the utmost sincerity and truth. That serenity of mind and peace, surpassing your understanding though of the very first rate, was chiefly owing to the conviction of a superintending Providence; and that misfortune is no more than a reasonable tribute to the misery of the world. Nor let this be deemed cant and hypocrisy, which I abhor, by those ignorant of the consolation of religion to devout minds deprived of every other. To the aid of religion I added also that of philosophy and metaphysics, a kind of medium between both, and attended closely to the resources of my mind, when pressed and strained to the utmost, at which times I usually found my imagination assisted, as it were, by collision, when suffering under the most unutterable anguish.
During my irremediable confinement, I was driven to the verge of desperation and real lunacy, through want of sleep, occasioned (I speak as if on oath) chiefly by the thinness of the partitions of the apartments, whereby I was disturbed by night with snoring and coughing, and and by day with ranting and raving; so that I know not what I would not have given for an hour's peace and am now astonished that I survived at all.
The poet says that, at the point point of death,
both worlds at once we view,
When standing on the threshold of the new.
Having thus closely attended to the operations of my mind when urged to the brink of insanity, as to form an idea of its reality, the best account I can give of it is, that in real derangement the mind is rather out of the body than the body out of the mind, according to the expression, "out of one's mind." I shall not, however, say all, Iest I should be deemed a fanatic, after having in a manner learned to live in mental fire, and experienced the reality of religion which enabled its martyrs to endure real flames. Flames I never endured but when as perfectly in my senses as I trust I am at present, I have been bound and tortured in a straight waistcoat, fettered, crammed with physic with a bullock's horn, and knocked down, and at length declared a lunatic by a Jury that never saw me; and, what would make a man tear his flesh from his bones, all through affected kindness. Another dreadful aggravation is, that every degree of resentment against the authors of their ruin, is considered as a presumption of remaining insanity in the sufferer, who has hardly any chance of restoration without their consent, though he adduces thousands of proofs that the whole was a scene of iniquity thus countenanced and encouraged. And so dead is society to these notorious breaches of it, that hardly an instance has occurred of legal redress obtained, even for the loss of property, the least part (though mine has amounted to thousands of pounds) of the incalculable and inexpressable injury.
The Attorney General, (Mr. Gurney was my other own Counsel; but I pay all, as I suffered all.), who has my thanks for making the motion, being fond of the ejaculation Liberavi animam meam, would use it with increased propriety, were he officially to attack a system of outrage that beggars description, and commences with depriving the sufferer of his property, the means of redress; a system controlled by no provisional guard in the nature of a Grand Jury; but a person, body, and often mind, is at the mercy of interested or offended relations, who thus have it in their power to inflict, without the charge of any crime, a punishment in comparison of which, transportation for life, or death itself, would be mercy.
To what particular cause I ascribe my persecution of a kind the more severe, because attended with indignity and contempt, instead of honour, its proper companion, is not material to the public: but they may be assured that these kinds of enormities are practised; and I am content to be branded with the appellation of liar, if I have exaggerated this sketch. But as if I were doomed to be the object of contradictions, I was found a lunatic, whilst composing remarks on Johnson's Lives of the English Poets, inserted in the Gentleman's Magazine, and afterwards published by Hookham, under the title of the Art of Criticism: and was declared non compos, and unable to attend to my affairs, which a respectable attorney kindly took into his hands, for me with a salary he procured under the seal, at a time when I contributed to Young's Annals of Husbandry, and used a farm of 100 acres entirely myself, who was at last extremely unwilling to part with his perquisites. I was afterwards still deemed a lunatic for years and years, when none except those acquainted with my history ever thought of such a thing; and a certain person alluded to declared I was the most extraordinary one he ever knew, yet took my money and books with a grin, and then bilked me. And to crown all, whilst endeavouring to prove myself not a lunatic, and become a fresh prey to savages, I was summoned on a coroner's inquest about fifty yards from my own house, on which I thought it best to serve, and did accordingly.
Of rapacity and brutality, and all that is shocking to human feelings, a mad-house, that premature coffin of mind, body, and estate, is to an imputed lunatic, the concentration. A trade to which seventeen years of the prime of my life has been sacrificed: a trade known to all, and disregarded by all, the connivance at which is a horrible disgrace to government and to society; which, whilst I forgive where forgiveness is due, it shall be the object of my life to expose to detestation and abhorrence. Yes, on this subject I have an especial right to speak -- I owe it to God, my country, and humanity to speak, and I will speak, and, if possible, make my hearers ears.
Mr. Erskine lately swore he would not die a slave. I hope that he will not: yet in a nation in which such outrages as I have experienced are practised with impunity, and their prosecution discountenanced, no man is safe from livng and dying in a strait waistcoat, in which I have lain whole winter nights bound, and cold from want of bed-clothes, a sufficiency not being allowed me, whilst as perfectly in my senses as I am now. Would to God that he, since those whose duty it is to investigate them shun them, would dart his lightning on scenes on which day has never shone! that miscreants to whom I bid defiance, may not for ever fatten on unspeakable calamity. If the publication of my case is dangerous, so is likewise silence. Should I at last perish, let it be in the face of the day.
It sometimes happens that obscure persons through extraordinary circumstances, become the instruments of good. And I will hope that the present Lord Chancellor, whose readiness in doing me justice, heretofore an entire stranger to it, as far as he was applied to, has my sincere thanks, and whose humanity and integrity in his high office are universally acknowledged, will strike at the root of this enormous evil, and thereby record his name on the roll of the benefactors of manknd.
-- A Victim to the Trade of Lunacy.
Postscript.
You, Sir, as I have observed, having expressed your wonder at my writings, the offspring of such very unpropitious circumstances, I take this opportunity of recommending to the favour of the public, my poetical effusions (effusions, I say, the versions of Scripture itself being not servile) in the Galaxy, the composition of which was an alleviation of my misery, and at times the source of pleasure; for barren is the rock interspersed with no patches of verdure. A work which having been long buried in the same living grave with its master, may possibly now partake of his resurrection.
Had I known how dreadfully this couplet of the Galaxy* ‹
And many a plague succeed, and many a woe,
And long, long, long, of Hell the bellows blow ‹
would have been verified in me, I should have been overwhelmed with despair, totally beyond the philosophy of any human being; so true it is that ignorance of the future, that anticipating Lethe, is the best boon of human life.
My favourite author, Cowley, says that those safe-landed no more regard the wind: yet though I do not believe Locke's doctrine of material traces worn in the mind, I find Pope's assertion, that of all sciences the hardest is to forget, more truly verified.
I perfectly remember that when, on the 8th of October, 1778, 1 was overwhelmed with astonishment at being carried to Hackney, to take my abode with idiots and real or supposed madmen, some of them just as mad as myself, these lines of Milton occurred to me:
Hail, horrors! hail
Infernal world! and thou profoundest hell,
Receive thy new possessor, one who brings
A mind not to be chang'd by place or tie.
For had I been the devil, I could hardly have been used worse.
*The Galaxy, containing near 300 quarto pages of sacred and miscellaneous poetry, having been, as might be supposed, blasted in the bud by very bitter winds, may be now had at No. 9, Thornhaugh-Street, Bedford Square, for half-a-crown, not one third of its value, if some good judges may be depended on. However, such a book of poetry, warm from the brain of a Lunatic, ought to excite the curiosity of a nation celebrated for humanity; especially as the receipt shall bee wholly applied to a Clergyman and his Family, actually starving in prison.
The Trade of Lunacy;
or,
an approved receipt, To make a Lunatic, and seize his Estate.
Watch for some season of vexation, and then, by proper insinuations and a pitying tone of voice, work the the patient to a due pitch of passion; then lay on blisters; and before his agitation of spirits has time to subside, hurry him away violently to a mad-house, so denominated, that is to say, one of the graves of mind, body, and estate, much more dreadful than the Bastille and Inquisition. There, as an earnest of taking possession of all his property, the means of redress, pick his pockets of every thing, totally confound his understanding by the strangeness of his treatment, and lay him in an apartment of which the partitions are so thin that he be kept awake by coughing, snoring, and raving; and then allege as a proof of madness, that he sleeps ill; but do not destroy him quite, unless bribed high, but give him opium to enable him to endure farther tortures and at the same time render him delirious. And should his stomach reject the plenty of physic with which you must be sure to ply him, the use of a bullock's horn will be very proper. Use him also with all manner of savage indignity; and be sure not to forget the strait waistcoat, nor also handcuffs and fetters occasionally, they being no less powerful arguments in thehands of mad-house-keepers, than cannon in those of state-tyrants. When the physicians, by appointment of Parliament, visit the house take particular care they do not see the patient alone; but the master of the house must be sure to be with them himself, lest something improper should possibly transpire.
In the mean time, with all imaginable secrecy and kindness, and with tears in your eyes, sue out a commission of lunacy against the unfortunate patient And should his patience far exceed Job's, so as to erase human feelings from his mind, and he be not totally undone; suffer nobody whatever to come near him, nor let him be seen by the Jury, to whom you may allege what you will against him without danger of contradiction; as the managers, coommissioners, attornies, counsel, and possibly the leaders of the jury, will be of your choosing, and at your disposal; whilst doctors, lawyers, committees, rent-gatherers, mad-house-keepers, ruffians, arid various other respectable brutes, make plenty of work for each other, among whom the property of the unfortunate patient should be liberally scattered.
So shall the trade of Lunacy prosper, and become more and more honourable and respectable.
N.B. The friends and guardians of a lunatic need very seldom be afraid that the state of his mind will be regarded as an object, unless they mean that it should; but may depend on it that their will and choice will determine whether he is in his senses or not.
Sketch ofan Helleborean Savage, or Smiling Hyena, famous in a Province over wich the Devil is said to do his business, by which the author was sevrely bitten, and Sir John Scott induced to declare it was a D‹‹D ODD THING.
THIS animal is a non-descript of a mixed species. Form obtuse ‹- body black -- head grey -- teeth and prowess on the decline -- visage smiling, especially at the sight of shining metal, of which its paws are extremely retentive -- heart supposed to be a kind of tough white leather.
N.B. He doth ravish the rich when he getteth him into his den.
FINIS.
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New item.
Incontinence, by John Kelly. John Kelly is a Boston-based activist and a graduate student at Brandeis University.
Like all bodies, my body is both a joy and a pain in the neck. Some things it does well, while with others it's quite incompetent. My single greatest hassle comes from the fact that my body, since the time of my spinal cord injury, does not regulate its own temperature. I must be careful about going out in the cold or the heat. My overheated body wakes me up in the middle of the night; my too-cold body won't let me fall asleep -- so I lose sleep and I bother my roommate.
Like many bodily issues, it's an annoyance I'd love to be rid of -- but temperature regulation doesn't cause me any worry or distress. My roommate and I simply make a guess at night about setting the heat or opening the window; about how many blankets I should have. When I tell people about this "problem," they might react with mild interest -- or not. It carries no emotional charge, either for me or for them. I almost never see it mentioned as a big problem for quadriplegics. It is simply a puzzle to solve, like what to eat for dinner.
Yet the mere prospect of another kind of bodily experience -- one that unlike temperature fluctuation has caused little actual disruption of my life -- triggers intense anxiety, even terror. It's incontinence. Its occurrence has more than once led to a personal death wish.
These aren't just my feelings, either. They're widely shared by a society that champions them through a range of deadly social practices.
Unlike temperature regulation, incontinence is a universal human experience everyone thinks they know the meaning of. In our achievement-based society, becoming toilet trained, along with learning to walk and speak coherently, is an essential milepost on the way to full personhood. Fetuses and newborns which may not develop these abilities, on the other hand, are seen as better off not living. Abortion gets slated for fetuses with spina bifida, for example, precisely because of the fears of incontinence, paralysis, and mental retardation.
In 1983, surgery was withheld from the famous New York newborn, Baby Jane Doe, because, as the father said, "We were told she would have no control over her bladder or rectal functions. And we were told that she probably had brain malfunction." Last spring, after a British surgeon sacrificed one conjoined twin to save the other, he predicted that life for the survivor "could range from a very good quality of survival, where she can walk and function normally, to the other extreme of not being able to walk and being incontinent." Medicine, ethics and prevailing common sense all hold that these inabilities, by themselves, render lives not worth living.
Yet it is in the cultural debate over end-of-life decision-making that the fear of incontinence has become especially dangerous. Unlike prenatal selection, now accepted culturally and institutionally, the "right-to-die" movement is eminently defeatable -- but we in the disability rights movement, caught between the larger cultural shame and the effort to protect our lives, have tended to avoid addressing incontinence head-on. This must change if we are to succeed in defeating those who believe "better dead than disabled."
The right-to-die movement talks about the unbearable agony of the terminally ill, about their suffering and loss of "dignity." Beneath all the fancy talk, though, lies the simple horror of incontinence. In a 1996 court ruling later overturned by the U.S. Supreme Court, the U.S. 9th Circuit Court of Appeals ruled for the constitutionality of the right to die, Judge Stephen Reinhardt terming it "a choice 'central to personal dignity and autonomy.' A competent terminally ill adult, having lived nearly the full measure of his life, has a strong liberty interest in choosing a dignified and humane death rather than being reduced at the end of his existence to a childlike state of helplessness, diapered, sedated, incontinent," Reinhardt wrote. "How a person dies not only determines the nature of the final period of his existence, but in many cases, the enduring memories held by those who love him."
With the phrase "childlike state of helplessness" and the words "diapered" and "incontinent," Reinhardt gets to say the same thing three times: incontinence calls out for "a dignified and humane death." If that is not enough, he also warns that incontinence could blot out a lifetime of human connection and achievement.
In perhaps the most notorious such statement, Janet Good, founder of the Michigan Hemlock Society and a colleague of Jack Kevorkian, told the Washington Post, "Pain is not the main reason we want to die. No. It's the indignity. I can speak for literally hundreds of people at whose bedsides I've sat at over the years. Every client I've talked to . . . they've had enough when they can't go to the bathroom by themselves. Most of them say, 'I can't stand my mother, my husband wiping my butt.' That's why everybody in the movement talks about death with dignity. People have their pride. They want to be in control."
The word "dignity" derives from the Latin for "worthy": that which is deserving of social respect. But while it may look like it belongs to the individual, "dignity" really comes from the shared judgments of other people. For there to be any general agreement on what dignity means, this must be so. Dignity is in this way just like its opposite, disgrace, which also comes from others' judgments.
Reinhardt, Good, and much of our society believe that incontinence strips people of their dignity. Being self-contained, calm, and in control, the reasoning goes, is simply incompatible with having your butt wiped by someone else. It is primarily for this reason that the titles of existing and proposed assisted-suicide laws prominently display the word dignity -- for example, Oregon's "Death with Dignity Act." To preserve dignity in such a situation, to stay worthy in the eyes of others, demands that autonomy and control be reclaimed by dying. And since dignity seems to carry courage in tow, escape from a humiliating circumstance gets characterized as a courageous act of the will. In fact, the only will on display is the social one.
Oregon's "Death with Dignity Act" authorizes people with less than six months to live to receive a deadly prescription for barbiturates. In reports on the law's first three years, physicians listed leading reasons for a patient choosing death as "losing autonomy" (83 percent), "decreasing ability to participate in activities that make life enjoyable" (78 percent) and "losing control of bodily functions" (66 percent).
Committing suicide for these reasons has been seen as a good thing. As the Associated Press reported after the first year, "Fears that the law would be used as an easy way out by people afraid of financial ruin or extreme pain proved unfounded. Rather, health officials found that use of the law has so far been driven overwhelmingly by the desire of strong-willed patients to exercise some control over the way they died." But this isn't true. People committed suicide, not to control how they died, but to reject how they lived. People whose sense of autonomy depended upon doing things for themselves, most especially their own personal care, could not, it seems, face life otherwise.
Kate Cheney, with terminal cancer, got her suicide pills from an Oregon ethicist after telling him that she might want to die if she could no longer independently manage her colostomy bag or get out of bed. One day, as her daughter helped her into the shower to clean up a leaking bag, Cheney resolved on the spot to die, but changed her mind. Her family finally facilitated her death the very day she returned from a depressing stay in a nursing home. It seems obvious to disability rights observers that her decision had nothing to do with her terminality but with a mortifying loss of independence in the midst of a family fully supportive only of her death.
Terminally ill people are supported -- even commended -- for killing themselves when they're seen to lose their autonomy or control of their bodily wastes: in other words, because of their passage into disability. Non-terminally ill people with disabilities are also supported in dying for the very same reasons. When 34-year-old Annette Blackman died at the hands of Jack Kevorkian, "Kevorkian's lawyer Geoffrey Fieger identified Blackman for police and said she suffered from multiple sclerosis causing 'total incontinence.'" The 1997 Detroit News story presented no other rationale for her death -- it didn't need to. To someone reading this story, the reason would have made perfect sense; for the uninitiated, it would have served as indoctrination.
Assisted-suicide advocates say suicide should be a right not just for people who are terminally ill but for all who "suffer unacceptably." "Once you've defined something as a 'benefit,' it is impossible to limit that 'benefit' to a small, narrowly defined group of people," says Not Dead Yet's Stephen Drake. "It's only a matter of time before pro-euthanasia people start claiming it's unfair to deny this 'benefit' to people who are disabled or ill, but not close to death."
Over 100 people received the "benefit" from Jack Kevorkian before he was imprisoned; media and supporters explained away his actions by labeling his victims "terminally ill." In fact two-thirds of Kevorkian's clients -- including Annette Blackman -- were not terminally ill in any respect, but in the popular consciousness, they may as well have been: disability blurs into terminal illness simply because, for many people, both share characteristics which make life not worth living.
Doctors and "loved ones" have also sought to extend the death benefit to people who are not even asking for it. In the Netherlands, where physician-assisted suicide is now fully legal, involuntary euthanasia is not infrequent and goes unpunished. Last year a Dutch doctor, convicted of murder for lethally injecting a woman against her wishes, received no punishment. All the court had to hear was that the woman's condition was "wretched," since she lay comatose in a bed "soaked in urine," in a room that stank from decubitus ulcers and necrosis. The court found that the doctor, while making an "error of judgment," had nevertheless acted "honorably and according to his conscience."
The assumed incompatibility of incontinence with adulthood works through a combination of assent and coercion. In the face of a powerful medical profession and cultural horror, people "choose" to withdraw treatment from their newborns or abort their diagnosed fetus, not incidentally saving themselves the trouble of raising a disabled child without social support or of joining their child as members of an oppressed minority. People who have labored their entire lives to receive the respect and feel the self-worth reserved for those defined as able "choose" death rather than lose that status. People around them urge them on. When oppressed and depressed disabled people find willing executioners, they are labeled "terminally ill" recipients of assisted suicide. The overall message in each instance is that disability is a fate worse than death.
Ten years ago, in these pages, Cheryl Marie Wade took the movement to task for not talking about incontinence. "If I can't talk about the need, then I can't talk about the choices, either," she wrote. "And yes, even weak, vulnerable cripples have choices. But if our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than to live with these basic needs that take away our privacy and seem like such a burden." What she said then is equally true now. Our shame still keeps us quiet. We have learned all too well from our rehabilitations or from those around us that what makes us different should be as hidden as possible. Incontinence is made into a "private" problem. Our silence, however, has left the field open to ethicists, selection advocates and Kevorkians.
Incontinence must be proclaimed as a natural feature of human variability: ubiquitous in childhood, not uncommon through adulthood, and increasing with age. It is no more worthy of death than menstruation, another uncontrollable flow of bodily wastes that has been labeled undignified and reason enough to disqualify those whom it affects.
As any baby could show you, the beliefs and practices attached to incontinence are thoroughly cultural. Cultural meanings can be shifted. Just as feminists declared "the personal is political," we must assert that incontinence is just another human condition, no more worthy of the death penalty than uncontrolled body temperature. Like feminists, we need to begin attending to it among ourselves, raising our consciousnesses. Because even if we aren't talking about it, the "death with dignity" forces certainly are. zzz zzzz.
Sidebar:
It Ain't Exactly Sexy. . .
To put it bluntly -- because this need is as blunt as it gets -- we must have our asses cleaned after we shit and pee. Or we have others' fingers inserted in our rectums to assist shitting. Or we have tubes of plastic inserted inside us to assist peeing or we have re-routed anuses and pissers so we do it all into bags attached to our bodies. . . .
If we are ever to be really at home in the world and in ourselves, then we must say these things out loud. And we must say them with real language. So they are understood as the everyday necessity and struggle they are.
. . . If our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than to live with these basic needs that take away our privacy and seem like such a burden.
From "It Ain't Exactly Sexy" by Cheryl Marie Wade, in the November, 1991 Disability Rag (reprinted in The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag, Advocado Press, 1994).
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Department:
History Lessons: Signing the Section 504 rules: More to the story.By David Pfeiffer. David Pfeiffer is Resident Scholar at the Center on Disability Studies at the University of Hawaii at Manoa, and editor of Disability Studies Quarterly (DSQ).
Jim Cherry wrote an interesting account of how his lawsuit helped force the U.S. Department of Health, Education and Welfare (HEW) to write regulations to implement Section 504 of the Rehabilitation Act of 1973. ("Cherry v. Mathews -- 25 Years and Counting," 2001, No. 4) Section 504 was the first explicit statement in a statute of the civil rights of people with disabilities. His lawsuit was indeed a major part of the events which led to the implementation of Section 504 -- but there is more to the story.
It seems incredible today that Section 504 was an inconspicuous part of the statute which brought it into life as a federal law. In 1972, Sen. Hubert Humphrey, a Democrat from Minnesota, wanted to amend the Civil Rights Act of 1964 to include people with disabilities. Sen. Humphrey had a grandchild with Down Syndrome and had learned firsthand of the discrimination faced by people with disabilities. He was determined to put an end to such discrimination as he had helped to do in 1964 with regard to people of color and women.
However, in 1972 as today, Congressional leaders who favor the Civil Rights Act of 1964 feared bringing it to the floor of the Senate for amendments, worried that opponents would change it so much as to destroy its impact. Humphrey was finally persuaded to have his disability antidiscrimination protections included in the Rehabilitation Act of 1972 instead -- the first rehabilitation statute to avoid the title "vocational rehabilitation." Congress passed the bill, but only after a bitter battle -- the most contentious part of the legislation was providing financial assistance to the state rehabilitation agencies so that persons too severely disabled to work (or so it was thought) could live independently. The Nixon administration strongly opposed this provision as a waste of money.
When the bill reached the Nixon's desk, he let it sit. The President has to sign or veto legislation within ten days, or else it becomes law without his signature. However, Congress must be in session for this to happen. The President can "pocket veto" a bill when Congress has adjourned by not doing anything. This is what Nixon did. The legislation died.
The new Congress convened in January 1973 and proponents of the Act reintroduced it. It still contained the provision for funding independent living, and it still had Section 504 in it. A bitter battle again ensued, but what was now called the Rehabilitation Act of 1973 passed Congress and was sent to the President to sign or veto in March. He vetoed it, because of the costs associated with independent living. There had never been any mention of Section 504 in public discussion of the Act at all.
Not having the votes to pass the Act over the President's veto, its proponents set to work again. They removed the funding for independent living and substituted much less funding for a study of whether independent living would be fiscally responsible. Section 504 remained in the Act, still virtually unnoticed.
On September 26, 1973, Nixon signed this version of the Rehabilitation Act of 1973 into law. It was viewed by most observers an evolution of the Smith-Fess act of 1920, which funded state assistance to people with disabilities for their vocational rehabilitation. The U.S. Department of Health, Education and Welfare was designated as the lead agency for writing the implementing regulations.
These regulations were written by HEW in conjunction with other concerned federal agencies, except for the Section 504 regulations. As Cherry writes in his article, it was HEW's position that Section 504 was a policy statement which did not require implementation. Cherry and others disagreed. Cherry began to lobby HEW to write the regulations; leaders in the newly-formed American Coalition of Citizens with Disabilities were urging HEW officials to do the same thing. Evidently they never knew of each other's activities.
To get support for his position, Cherry contacted rehabilitation providers for support. These groups got federal and public funds. Since civil rights and rehabilitation procedures were in conflict, then as now, they refused to back him. Cherry then proceeded to sue HEW.
With pro bono legal assistance from the Institute for Public Representation of the Georgetown University Law Center and the backing of his Louisville, KY, hometown Action League for Physically Handicapped Adults, Cherry filed suit in the federal district court of the District of Columbia. He paid the court costs out of his veteran's disability pension. Ragged Edge editor Mary Johnson was president of ALPHA at that time.
The suit Cherry v. Mathews was filed on February 13, 1976. HEW contended that they were not legally bound to issue any regulations regarding Section 504. The court disagreed, ruling in Cherry's favor July 19. Not wanting HEW to appeal the decision, Cherry kept quiet; as he wrote in his Ragged Edge article last summer, he purposefully avoided going to the media. Administrators in HEW did draw up some regulations, according to Cherry, which HEW Secretary David Mathews refused to sign.
In fact, draft regulations on Section 504 were in existence by May 1975, nine months before Cherry filed his court case. HEW did not want to reveal this fact to the Court because it would weaken their case.
On January 18, 1977, two days before he was to leave office, HEW Secretary Mathews was directed by the federal district court to sign the regulations. On appeal the next day, Mathews argued that in one day he would no longer be Secretary; it was properly Sec. Joseph Califano's responsibility now. The appellate court agreed.
Califano, "a personal friend and former law partner" of Cherry's own attorney, as he wrote, began his own review of Section 504 and the regulations written earlier. Cherry was puzzled when protests occurred in April 1977, almost four full years after the law's signing. He acknowledges that some felt the regulations were being weakened by Califano, but since his lawyers were working with Califano's HEW team Cherry and his lawyers "had no such concern."
Richard Scotch, in his book From Goodwill to Civil Rights: Transforming Federal Disability Policy ( second ed. 2001) gives more insight into Mathews' reluctance during 1976 in signing the regulations. An indecisive man by nature (reports Scotch), Mathews was concerned about the costs of implementing 504 -- and, says Scotch, he did not like the idea of people who were receiving rehabilitation assistance challenging their providers on the basis of civil rights. Those in higher education were worried about the costs of removing barriers as well, and forcefully expressed their views to Mathews, who had headed the University of Alabama.
After taking office as Secretary of HEW, Califano delayed as well, reports Scotch. Officially it was to "study the matter"; but in truth Califano, like Mathews, did not fully support the radical idea that people with disabilities had civil rights, nor, says Scotch, did he like including drug addicts and alcoholics as disabled.
The process dragged on through February and March of 1977.
The ACCD Board voted that if the regulations were not signed by April 4 in the form they were in when Califano took office, there would be nonviolent demonstrations in HEW offices nationwide; demonstrations in San Francisco and Washington, D.C., would be large, they warned.
On Tuesday, April 5, 1977, the demonstrations began. In Boston, I led the demonstrations (at the time I was State Director for the White House Conference on Handicapped Individuals and a full-time university professor); both Sen. Ted Kennedy and House Speaker Tip O'Neill supported us. We left the HEW regional offices after making our point that it was past time for the signing of the regulations; demonstrators in most other HEW regional headquarters left after a short time as well.
In most other HEW Regional headquarters they also left. However, demonstrators at the HEW office in San Francisco, and at HEW headquarters in Washington, DC, continued to hold their positions, and the Carter Administration did not want the embarrassment of arresting "the deaf, the blind, and the crippled." There were conversations going on between ACCD leaders and the HEW. The demonstrators remained in the two offices until April 28, when Califano finally signed the Section 504 regulations.
Califano signed the regulations for yet another reason: On May 23, the White House Conference on Handicapped Individuals was scheduled to convene in Washington; over 3,000 persons with disabilities and their supporters were expected in town -- many of them well-briefed on the events; many who had demonstrated at HEW regional offices on April 5. If the regulations had not been signed by the time they arrived, they would have joined their fellows in the long demonstration at Califano's office -- to the embarrassment of the Carter administration.
The disability community was elated with their victory. The regulations contained most of what they considered to be essential. The regulations left out some of what opponents considered bad. It was a good outcome which laid the groundwork for the further development of the civil rights of people with disabilities.
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WHAT? Department.
"I didn't want to live as a cripple." Actor Larry Hagman, on the Dec. 9 Entertainment Tonight weekend edition, referring to his liver transplant.
"He's in a wheelchair and can't do anything." Washington Redskins owner Dan Snyder's wife, Tanya, speaking of her 9-year-old nephew David, who has cerebral palsy. Snyder, who was talking to Washington Post gossip columnist Lloyd Grove at the time, added that her sister and brother-in-law, Julie Edwards and Redskins executive Scott Edwards, were "very special people."
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READING Department.
Before Helen Keller: A review by Anne Finger. Anne Finger is the Poetry/Fiction Editor of Ragged Edge magazine.
The Education of Laura Bridgman: First Deaf and Blind Person to Learn Language, by Ernest Freeberg. Cambridge, MA: Harvard University Press, 2001. Hardcover, 272 pp. $27.95
The Imprisoned Guest: Samuel Howe and Laura Bridgman, the Original Deaf-Blind Girl, by Elisabeth Gitter. New York: Farrar, Straus and Giroux, 2001. Hardcover, 341 pp. $26.00
In 1851, an international exhibition was held in London's Crystal Palace. The United States, then an upstart nation with a decided sense of cultural inferiority in contrast to its European siblings, presented a paltry show of its products, including pasteboard eagles and a set of false feeth. The Boston Evening Transcript suggested that what should have been exhibited was a product of American initiative and know-how which would have surpassed "the looms of England [and] the delicate fabrics of France": Laura Bridgman, America's deaf-blind wonder.
Bridgman, who -- at least before the advent of these two books -- had become a footnote in Helen Keller's story, in her day rivaled Queen Victoria for the role of most famous woman in the world. Samuel Gridley Howe, head of the Perkins School for the Blind in Boston, was praised as the valiant savior who had rescued her from a soundless, sightless vacuum. Bridgman was celebrated in verse; guidebooks listed her as one of Boston's major tourist attractions. Dickens devoted almost an entire chapter of American Notes to her. She was the recipient of much of the same sort of fulsome praise that was later heaped upon Helen Keller.
And yet, when she appears in books about Keller, she is written of as a dry and uninteresting woman, capable of doing little more than mouthing religious pieties. The photograph of Bridgman that appears in these texts seems to bear out this view of her: a thin-faced, homely woman, wearing a dark dress and sitting in a dark chair, her hair plastered against her head, in the process of threading a needle with her tongue.
How did Laura Bridgman move first from being a child cut off in many ways from language on a New Hampshire farm to a girl who was rhapsodized as an "angel-soul," "[s]lender and delicately formed, with beautiful features and fair complexion," who not only exhibited "the triumph of the mind over all material bonds and trammels," but whose spirit had "[u]nveiled communion" with God? And how did she go from there to living as a permanent resident at Perkins School for the Blind, crocheting souvenirs which she sold to make a little money, rereading the few books she owned, and sometimes dropping in on sewing classes to perform her trick of threading needles with her tongue?
It is to the credit of both these authors -- and a testament to the space opened up by the field of disability studies -- that the answers to those questions are not presented in any facile way. Both Freeburg and Gitter situate Bridgman and Howe at the nexus of a complex of social and intellectual currents. Enlightenment philosophers -- concerned with the nature and origin of the human mind and its means of perception -- were fascinated by those with sensory lacks: the French philosopher Diderot, for instance, wrote both a Letter on the Blind and a Letter on the Deaf and Dumb, in which he speculated about the relationship of perception to religion, aesthetics and language. In the early part of the 19th century, the Brahmins of Boston (a caste of which Howe was a tentative member) were engaged in a great variety of charitable enterprises. Motivated both by a sense of moral duty and a desire to keep the wayward and threatening lower orders in check, they were busily establishing asylums, poorhouses, hospitals and schools.
Howe, who had volunteered to fight alongside Greek rebels against the colonizing Turks, returned to Boston in 1831 as a dashing war hero. He was seeking a vocation which would give him both a sense of power and the certainty that he was making the world a better place -- both of which he found when he was picked to lead the new Perkins School for the Blind.
Howe was actively looking for a deaf-blind child to educate who would suit both his philanthropic and scientific ends. Having gotten wind of Laura's existence, Howe paid a visit to Laura's parents and arranged for her to be taken to Perkins; one of his companions on his trip to New Hampshire later recalled his "exaltation at having secured her."
But, in fact, Laura was not an innocent, untouched child, living in an intellectual wilderness, awaiting her savior's coming. Asa Tenney, an adult neighbor who was "destitute, shabby, strange in his manner, and incoherent in his speech" was her dear, if odd, friend and teacher. Later, Laura would recall how he had used signs to communicate with her, and taught her about the external world by means such as having her place a stick in the water so she could feel the flow of a brook. Tenney objected to Laura being taken away to Perkins, arguing that the sign language the two of them were developing was most suited for her, and fearing the emotional damage that would be done if she were taken from his love and care. Laura would later remember Tenney as "an Angel and a messenger to me from the hands of God."
At Perkins, Laura was taught by means of embossed letters attached to objects and by the same technique of fingerspelling into her hand which Annie Sullivan later used with Keller. Her thirst for knowledge was so overwhelming that she frequently exhausted her teachers. She wanted to know "[w]hy don't fish have legs? Does the horse know it is wrong to go slow? Why don't horses and flies go to bed? Why do flies not have names like boys and girls do? Why do cows not draw?"
While the ground covered by these two books is much the same, Gitter's is by far the more ably written. While Freeburg seems to drown us in a sea of facts, Gitter has a sure and steady hand and is unafraid to draw conclusions. Bridgman emerges from Gitter's engaging and well-crafted account as a passionate and driven woman, intense, sometimes angry, and often demanding. The bonds she formed with Howe and her individual teachers were loving, but because she had so few other outlets for her affections, when the course of their own lives took them away from her, she experienced overwhelming rejection and pain. When Laura ceased to be the pure and loving disabled child and became the more complex disabled adult, with needs and desires of her own, she lost her prized position as the angelic child-wonder.
Helen Keller said that if Annie Sullivan had been Laura's teacher, Laura would have outshone Keller. Perhaps the most valuable lessons Sullivan was able to offer Keller grew out of her own experiences as a disabled person. Sullivan, blinded by trachoma at the age of five, escaped from the state poorhouse (in a scene that could have come from the pen of Charles Dickens) by grabbing a visiting worthy and imploring: "I want to go to school!" That action got her to Perkins, and a subsequent surgery restored some, but not all of her sight. I don't doubt that her own knowledge of how to navigate between the shoals of pity, repulsion and condescension did much to help Keller make the difficult public transition from girlhood to successful adulthood, a transition that eluded Laura Bridgman. zzz zzzz.
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Unrealized potential: A review by Terry Galloway. Terry Galloway is a hearing-impaired writer, performer and director.
Eva Weintrobe met Morris Davis at the Warrington Dance Club in Liverpool, England when she was 25. He was 13 years her senior. Davis was living in the United States, but had returned home to pay a brief visit to his mother in London.
After Morris and Eva had seen each other only three or four more times, he tendered his marriage proposal. Eva balked, not wanting to leave her family, her job, her friends and her country to set up house in the U. S. with a man who was a comparative stranger.
Shall I Say a Kiss? is the book disability scholar Lennard Davis has fashioned from the letters the couple -- his own father and mother -- exchanged in that time between his proposal and her final acceptance.
A few of these letters were written by Morris, but the bulk come from Eva's hand, offering us a record of the life and opinions of a young Deaf, Jewish working-class woman from England about to embark on marriage to a man she didn't really know.
At first she writes to him, "The only thing that is making me draw back is because everything seems so strange getting married in such a rush, and going off to America within only such a short time of knowing one another." He was not dissuaded. She was soon writing more curtly, "How do you expect me to get married in two months time, it would be far too much of a rush for me."
His persistence must have become hectoring, because shortly thereafter she writes, "After all this fuss I see no excitement at the prospect of going to America for even a short stay." And then again, "Nothing will make me change my mind. . . . I have told you before, I will not rush into things."
It's potentially an interesting story. Will Morris nag her into saying 'yes'? Will the U. S. grant her a visa to join him if she does? Will this be a marriage of love or barter?
But the potential goes largely unrealized.
During the time in which Eva and Morris corresponded, the Great Depression was still casting its pall, World War II was rumbling in the future, class wars were brewing, Judaism was being threatened, Deaf culture itself was in transition. But you wouldn't know it from the letters Eva and Morris exchanged. It's not only that these letters lack a particular eloquence, it's that they are only marginally revealing of the people behind them and of the times in which they lived. And those were turbulent times.
Deaf social life in England is only touched upon. "I went to Hailbi Island with a deaf crowd," Eva writes. But there are no telling descriptions of the club, the crowd itself, what they were doing, what might have been said.
What did the Jews who lived in London think of the political tensions of the day? Nothing much at all, to go by these letters, in which the few Jewish references are along the lines of "The Jewish Club in London are having a Carnival in January."
Working class life, too, is only obliquely suggested: "I have made a few frocks for Ann and she is very pleased with them." Or "We are still very busy at work and working late some nights."
Perhaps, as the editors suggest, it is the omission of detail that we should find interesting. "One of the lessons of these letters," says Lennard Davis, " is that to Morris and Eva their deafness was so much a part of their lives it did not require constant discussion and attention." Fair enough. These are, after all, the straightforward letters of a young, unimaginative, practical, hard-working girl who was trying to keep from being caught up in the emotional melodrama of an older man. It seems almost churlish to want more. But we've been primed to want more by the claims of the prefaces.
There are two of them, the first written by Gerald J. Davis, the second by Lennard J. Davis, the hearing sons of the deaf couple whose correspondence makes up the book. The prefaces best serve the letters by providing the framework in which to read them and by supplying those missing, compelling details. Eva, we discover, became deaf after a bout of meningitis, Morris from a botched ear operation. She spoke clearly and with a Liverpool lilt; his speech was "coarse and guttural." The Deaf club that met on Sunday afternoons "was a quiet world of flying hands, occasional grunts, and clacking teeth." Eva's difficulty in getting her visa was rooted in a basis not against her Jewishness but her deafness -- and the fact that she was working class. "There was a continuum, " we are told, "that linked being working-class, insane, deaf, disabled, and so on."
But the letters are ill-served when the prefaces step beyond framing to make exalted and unrealistic claims. Gerald writes that the reader can expect a "great range of emotions, from anger to love, from joy to bitter disappointment." But the passions of these people -- or at least their expression of them -- are subdued, almost nonexistent. As Eva herself admits, "You say I have never said that I love you in any of these letters that I have written to you, have I not told you before that I am no good in expressing my love for you in black and white."
Nor can the unassuming story that unfolds withstand Lennard's comparison of it to the "epistolary romances of Richardson and Rousseau." These letters might even act, as they have once before, as the inspiration for a good theatrical adaptation that could make Eva and Morris come more vividly alive. But the book is at best a modest exchange of letters of interest to an historian or researcher -- or to a select audience who might read this book as a supplement to Lennard Davis's highly regarded My Sense of Silence: A Memoir of a Childhood with Deafness. zzz zzzz.
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A gloomy portrait of the Americans with Disabilities Act. A review by Chloe Atkins. Feminist scholar Chloe Atkins teaches at the University of Toronto.
When I was first asked to review Ruth O'Brien's Crippled Justice: The History of Modern Disability Policy in the Workplace, I feigned interest, all the while fearing that the treatise would either read as one long litany of complaint -- or would be over-burdened by a statistical and empirical analysis that, while relevant, would utterly bore me. Fortunately, my anxieties were misplaced.
What is immediately apparent about Crippled Justice is that its author, Ruth O'Brien,who is an associate professor at the John Jay College of Criminal Justice and deputy chair of the political science program at the Graduate Center of the City University of New York, is a ferocious and insightful researcher of public policy. That she focuses her ample abilities specifically on U. S. vocational and rehabilitation policies will undoubtedly benefit a number of disciplines. Disability activists will rejoice at having an articulate and thoroughly researched history of the development of vocational policies in the U. S. all the way up to and including legislation such as the Americans with Disabilities Act. Academics who focus on social policy and employment law will also find much of critical merit in this book. In fact, any reader who has had disability touch her life in any small way will discover that O'Brien manages to make what otherwise might be a tedious rendering of 20th-century rehabilitation policy into an absorbing account of the political and social tensions which led to the construction of "disability" and of "vocational training" in the United States.
At times, I reeled at O'Brien's disclosures. Of course, I was familiar with the fact that people with disabilities had been -- and continue to be -- over-medicalized. But what this book makes very clear is that disabled people bore the brunt of policies that originated in bizarre psychological theories that saw the disabled as harbingers of social and political corruption. From this perspective, disability was viewed as an enemy of democracy.
Employing the "whole man theory of rehabilitation" meant that the "helping" professions tried to "normalize" disabled individuals whose physical abnormalities inevitably made them psychologically defective. As I read portions of the opening chapters in disbelief to my mother-in-law, who was one of the original occupational therapists trained in Britain after the Second World War, she confirmed that her training emphasized the psychological deformity of disabled individuals. Rehabilitation and state-sponsored programs of vocational re-training were the manifestation of a belief that disabled people needed to be normalized through a variety of psychological and physical techniques. O'Brien traces the manner in which an epistemic community formed around the disabled which gave those with disabilities little or no voice in the formation of U. S. rehabilitation, social or employment policies.
Crippled Justice does a good job of correlating the whole man theory of rehabilitation with specific federal policies and legislation. It becomes evident that despite the wording of Section 504 of the Rehabilitation Act in 1973, which stipulated that a "handicapped person" could not be discriminated against in programs which received federal assistance, neither legislators, policymakers or rehabilitation professionals conceived that disabled individuals had rights. Furthermore, O'Brien shows that this epistemic community managed to influence not only vocational re-training of the disabled but also social welfare policies that sought to "normalize" the self-fulfilling defeats of the poor.
Government officials were persuaded that the poor could be rehabilitated and that this rehabilitation, like that of the disabled, would facilitate the moral and political health of the nation. Unfortunately, if the book lags at any point, it is during this section when the author outlines the whole man theory's influence on social welfare policy. Nonetheless, O'Brien successfully convinces the reader that the result of this moralizing approach is that legislation that deals with the accommodation of the disabled is continually shadowed by fear that accommodations are economically unreasonable and by the belief that it is up to disabled people themselves to secure a place for themselves in the community and in the workplace.
My only other complaint about this book is that it constantly employed acronyms which can make the discussion difficult to follow. I had to keep flipping back, scouring pages for when HEW, VA, EEOC and other acronyms were first introduced. The book may well exclude audiences which do not have an immediate grasp or recall of American policy and/or legislative institutions.
Crippled Justice provides a gloomy portrait of the Americans with Disabilities Act and its failure to protect disabled employees. O'Brien cites judicial decision after judicial decision which eviscerate the original intent of the law. It is surprising that it is not more commonly known that over 80% of the disabled employees who seek accommodation before the courts fail to get accommodation. (Having spent a year doing research at a law school, I can attest that this fact was not well known, even among employment law experts.) The vast majority of claims are disallowed on the basis that the individuals are not disabled enough; however the courts rule that they are incapacitated in such a way that they no longer qualify for the job. The issue of undue economic hardship becomes moot when judges assess that few individuals actually qualify as disabled enough to receive accommodation.
It is at this juncture that O'Brien uses the breadth of her knowledge of American public policy to good avail. She persuasively argues that the courts want to protect the employer-employee relationship from interference. The ADA places disabled individuals in the rather unique position of being able to bargain individually with their employers about appropriate working conditions. This power side-swipes unions who bargain collectively and challenges the American employer's capacity (except for a few minor prohibitions) to "fire at will." The employment section of the ADA attacks one the fundamental assumptions of capitalist economy: that the employer, despite collective bargaining by unions, has the proprietary right to establish the conditions of the workplace. O'Brien claims that the courts have consistently ruled against disabled employees because the ADA challenges this balance of power.
Those who are not disabled should take notice of these rulings, says O'Brien, for they represent a defeat not only for disabled individuals trying to maintain their employment, but for all employees who seek greater autonomy in the workplace. The courts will apparently reinterpret and twist the intent of law in order to protect the hegemony of the employer.
On the surface, Crippled Justice is a history of disability policy in the workplace. In fact, it is a cautionary tale of the invisible and sometimes curtailing of individual freedoms that occurs when we clock in at work.
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OVER THE EDGE Department.
Anne Finger found the following document on her hard drive a few months ago -- she thinks it must have been sent there by that worm that picks up documents off other people's drives and sends them on through cyberspace.
"What an interesting coincidence that this should have reached us!" she writes.
A Modest Proposal
For Preventing Disabled Children from Being A Burden to their Parents and Society, and for Making them Beneficial to the Public
by Peter Stinker
With apologies to Jonathan Swift.
It is disturbing sight indeed, for anyone who has traveled in what we in the industrialized nations euphemstically call "underdeveloped countries" and see the streets and marketplaces crowded with starving beggars, begging for food and coins. As I have argued elsewhere in my work (especially in my Practically Ethics and Restinking Life and Death), our ethical obligations to other sentient beings are not dependent on our geographic proximity, racial and ethnic similarity or any other such extraneous factor.
At the same time that malnutrition and even outright starvation are rampant in the non-industrialized world, the lives of disabled infants are sustained at enormous social cost in the neonatal intensive care units of modern hospitals in the industrialized societies. These infants will, of course, survive only to live lives of which are nothing but pitiable and miserable.
The resolution of this sorry state of affairs would indeed be a positive good in the world. Therefore I propose a two-fold solution which, while it will not completely transform this sorry state of affairs, will be a positive step towards remedying it.
The first part of my proposal is that the money heretofore wasted on the preservation of the lives of these severely and grossly deformed lives be diverted to the care and nurturance of the non-handicapped in the Third World whose lives are currently threatened by malnutrition and curable diseases.
I do not expect that this part of my proposal will prove controversial. No logical argument can be made for preserving one life when a hundred others could be rescued from starvation with the money saved.
The second part of my argument will, I am almost certain, meet with more resistance: therefore, I am going to make a few points before I even offer it. Be aware that many new ideas are initially met with shock and horror. Galileo, Copernicus, and Darwin are but a few of the thinkers whose ideas not only challenged the established order but filled those who heard them with an innate sense of revulsion and the notion that they were "unnatural." I suspect that many of my readers will have the same reaction to my modest proposal, but I urge them to look beyond this initial emotional response and consider the irrefutable logic of my position.
I propose that these same infants, who will perish without this intensive medical treatment, be humanely slaughtered and then eaten. The carcasses could be shipped to countries in need of food, but it would probably be more practical to sell them on the open market, and donate the proceeds to charities such as Oxfam and Care which provide famine relief.
The objection will be made that the practice of cannibalism is shocking and offensive to our sensibilities; that however little one can argue with the logic of the practice, no one will want to indulge in it. Recent practice has shown us that a certain class of consumers be willing to buy almost anything if it is presented to them as a luxury; indeed, the practice will be seen as "cutting edge" and consumers will vie to pay vast sums for the privilege of indulging in such a daring repast, while at the same time comforting themselves with the thought that they are helping to make the world a better place.
While I myself have never tasted human flesh, Jonathan Swift assures us that a young child is "a most delicious, nourishing, and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricasse or a ragout . . ." zzz zzzz.
New item.
Spokes and Cure, by Ed Hooper. Ed Hooper plays and coaches quad rugby and serves on the board of his local independent living center.
"What's this crap I hear, Hoops, that you don't want to be cured?" asked my wise-guy para buddy Spokes Ableman. "Have you lost what's left of that quad mind of yours?"
"You know, Spokes, it's just like you to take a positive analysis of living a happy life from the seat of a wheelchair and turning it into a mental dysfunction. I never said that I would refuse something that might improve my quality of life."
"You're not exactly Christopher Reeve here," Spokes chided. "I mean I understand you not wanting to look like a 200-pound Pinocchio or to something out of a Mary Shelley novel, but you've been quoted as saying you wouldn't take the cure. What's that all about?"
"Spokes, I said that I didn't need to walk again to live a happy life. There's a big difference between that and refusing to do something that would make my life easier," I responded defensively.
"What's walking got to do with any of this, Hoops?" Spokes asked. "This is about having some of those normal physical functions, you know, like bowel, bladder, and how about a little pelvic thrust just to round out the big three? BB and S. Bowel, Bladder and Sex. Give me the BB and S and I'll roll through this world like a man who just won the lotto."
"What, like you don't have sex, Spokes?"
"Yeah, I have sex, great sex, but men were made to thrust. And the last I checked, I'm a man. What about you? Wouldn't you like to have your thrusters activated again? Or how about just taking a long, long leak? Whoa, baby."
"OK, OK! but those are not the driving forces that control my life. I can't and won't obsess over something that I've learned to live with or without."
"Oh, boy, here we go." Spokes began get a little more aggressive. "So, you'll let the Chris Reeves of the world obsess and if they're successful, you'll jump (excuse the expression) on the proverbial bandwagon. Is that it?"
"In the first place I'm not that concerned about Reeve. He still works and has money. He obsesses as time permits. I'm worried about that group of poor disabled people -- the norm -- who spend virtually every waking hour waiting for the good news while the years and their lives tick fruitlessly away. It's amazing how one word keeps them going: 'Soon.' 'It's coming soon.'"
"Hoops, you know that when the breakthrough comes, all of that goes away."
"Wait a second, Spokes. You're saying we can cure our way out of social responsibility?"
"Hey, you didn't answer my question about jumping on board," Spokes persisted.
"Spokes, we can't all put life on hold, hoping some SCI mouse will start twitching his hind legs in a lab somewhere."
"Yeah," Spokes began to worry aloud. "You know the whole prospect of fixing the central nervous system is frightening. Once the mice are running, who'll be the first human? And will there be short-circuits that cause some kind of herky-jerky, Mr. Roboto motion? China shop owners will be rushing to slap 'Closed' signs on their doors when they see 'the cured ones' approaching.
"And what about pain?" Spokes puzzled. "I've been sitting on my butt for 25 years almost as long as that good-for-nothing brother-in-law of mine. My legs and rear end aren't going to win any beauty contests, so what happens when they infuse a jolt of feeling into those atrophied ducklings. Ouch!"
"So, Spokes, you helped answer your own question. If a proven procedure -- meaning no long-term or excruciating pain or weird results -- were available to help me improve my quality of life, I'd do it. But the bottom line is that I don't need it to be happy.
"And you know, Spokes, there are tons of people like you who succeeded with a disability, not without one. You wouldn't be near the smartass you are as an AB."
"Well, thanks for those kind words, Hoops, I think. Would Itzhak Perlman fiddle better without polio? Would Stevie Wonder write and perform the same with 20/20 eyeballs? And would we understand black holes if Stephen Hawking could sing and dance the Watusi? Who knows? And I guess who cares, since they've become who they are with their disabilities?
"Oh, oh, there's that look on your face again, Hoops. You're going to use the P-word aren't you?"
"You mean pride, Spokes?"
"Yep, pride. You always manage to sneak that into the discussion ‹like pride gives you a right to get on your soapbox and beam like the winner of some 8th-grade spelling bee."
"What, Spokes? You're not proud of the life you forged with your disability?"
"Damn right I am. But humility and a cure prevent me taking my much-deserved bows.
"See ya next time, Hoops." zzz zzzz.
End of current issue.
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zzz zzzz, zzz zzzz.
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