Adult Protective Services Versus Jerry Chenoweth by Laura Hershey
The Yellow Wall-paper by Charlotte Perkins Gilman
Reviews: A Mighty Change: An Anthology of Deaf American Writing 1816-1864; Access, Activism and Art in American Theatre Magazine, April 2001 issue; Only Bread, Only Light: poems by Stephen Kuusisto
Poetry Lost Creek Campground, Wheelchair Accessible Trails by Melanie Green
Ten things I learned from filing an EEOC complaint by James E. Patterson
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known as the Individuals with Disabilities Education Act (IDEA). Congress promised to pay 40 percent of the costs for those services.
A quarter of a century later, the federal government is paying between 10 and 15 percent of special education costs, a fact that has frustrated few lawmakers more than Sen. Jeffords of Vermont. Jeffords repeatedly pushed for increased funding in special education, only to find resistance from within his own Republican party.
This year, Jeffords led the Senate in passing a budget amendment that would have increased federal spending on special education to about $180 billion over the next ten years, but pressure from Republican leaders and the Administration got Jeffordsı provision removed from the measure.
At the end of May, Jeffords left the Republican Party and became an Independent, giving control of the Senate to Democrats.
³Looking ahead, I can see more and more instances where I will disagree with the president on very fundamental issues,² Jeffords said. ³The largest, for me, is education.²
More articles on Senator Jeffordsı emphasis on special education are available from Inclusion Daily at http://www.InclusionDaily.com/22/extras .htm#education
HMO giant to become accessible; lawsuit settled
In April, HMO giant Kaiser Permanente settled a class-action lawsuit brought last year by the Oakland-based firm Disability RIghts Advocates by agreeing to make its examination tables, mammography machines and other equipment and facilities accessible to people in wheelchairs and with other disabilities. The suit had charged that the HMO gave disabled people inferior medical service by failing to provide access.
³The agreement with Kaiser provides a comprehensive blueprint that could be used by any health provider anywhere in the country,² said DRA attorney Sid Wolinsky. ³We intend to use this as a template to present to other major health-care providers, to urge that they, too, adopt this approach.²
Zum Brunnen wants another showdown with Eastwood
Diane zum Brunnen, who sued Clint Eastwood for violating the Americans with Disabilities Act, has filed a motion asking for a new trial. Zum Brunnenıs 1997 suit claimed Eastwoodıs Mission Ranch Inn in Carmel was inaccessible when she and her husband visited.
Last September, a California jury ruled Eastwood was liable for three ADA violations at the resort and ordered him to provide a ramp to the registration office, a second accessible guest room and signs about the accessible restrooms which were 234 feet away from the main building. The jury did not order Eastwood to pay any damages to zum Brunnen.
Zum Brunnenıs motion for a new trial says jurors were biased toward Eastwood,and that he had been allowed to unfairly influence jurors by playing piano for them when they visited Mission Ranch to see the layout, and by signing autographs for them when the case was over.
Eastwood has portrayed himself as a hero for small business owners who do not follow the Americans with Disabilities Act; last May he argued before the House Judiciary Committee that businesses should be given a 90-day notice before a discrimination complaint could be filed based on the ADA. (See ³ADA Notification Act rears its ugly head again,² May 2001)
Information supplied by IDE
Institutions violate rules on restraints, says report
Staff members in Illinois mental facilities violated federal and state guidelines regarding physical restraints used on residents, says a report released in May.
³The State of Restraint Utilization in the New Millennium: Practical Recommendations for Positive Intervention² was prepared by Illinoisı protection and advocacy service, Equip for Equality, in response to complaints from residents and their families. Its completion was delayed by having to take the state Department of Human Services to court to gain access to records.
The review of 325 incidents in 10 Illinois mental facilities during the last six months of 1997 looked at whether physiciansı orders were given and followed; how long each person was restrained; whether the person was monitored during the restraint; and whether or not the restraint was needed to protect the person or others from harm.
Findings: only a fourth of doctorsı orders listed a reason for the restraint; some people were restrained simply because they did not cooperate with staff members or because they had shouted insults at them. Nearly 20 percent were left in restraints for more than an hour. Report recommendations are useful for other states.
The Restraint Monitoring and Policy Project Final Report (appx. 84 pages) is available at http://www.equipforequality. org/headerg.html
Dave Reynolds, IDE
Fresno activist killed in street; city has failed to install curb cuts
For more than a year, Fresno wheelchair user Elias Gutierrez had been complaining about the lack of sidewalks with curb ramps in the areas where he had to travel, saying he was being forced into the streets to travel to shopping and to visit friends.
On Sunday, March 18, the 60-year-old activist was killed when he was struck by a car as he was traveling in his power wheelchair next to the curb on Palm Avenue near Cornell. There were no curb cuts available to allow him to get onto the sidewalk.
³Itıs our worst nightmare,² Fresno disability activist Ed Eames says of Gutierrezıs death. ³Elias has become the victim of this cityıs wanton lack of concern with the issue of making sidewalks a safe haven for people in wheelchairs.²
Supreme Court to take up ergonomics under ADA
Ella Williams, a former paint inspector at a Toyota plant in Kentucky, claims she developed carpal tunnel syndrome from doing repetitive tasks at the plant. Toyota says it offered Williams a different job, but Williams turned it down, saying it included manual labor that she was not able to do. Williams sued under the Americans with Disabilities Act, and the U.S. Supreme Court will take up her case this fall. Along with Williams' case, the Court will hear the case of former US Airways baggage handler Robert Barnett, who injured his back while on the job. Barnett claims US Airways put his need for reasonable accommodation below requests of nondisbled workers with more seniority.
Sea change:
Finally, the money is starting to 'follow the person'
Since the 1999 Supreme Court decision in Olmstead v. L.C. and E.W. requiring states to offer services to disabled people in the ³most integrated setting,² disability activists have been pushing their states to ensure that Medicaid dollars ³follow the person,² in the language popularized by ADAPT (see ³Getting Home: Activists take action after Olmstead,² D.R. Nation, Sept./Oct. 1999, and ³Bed Money,² May/June 2000).
In recent months, activistsı actions have started to bear fruit:
Texas: Legislature puts ³money follows person² plan into budget
In June, the Texas legislature added riders to the state Dept. of Human Services budget with the ³money follows the person² language: ³It is the intent of the legislature that, as clients relocate from nursing facilities to community care services, funds will be transferred from Nursing Facilities to Community Care Services to cover the cost of the shift in services,² reads one. ³This is the money follows the individualı principle put on paper,² says national ADAPT attorney Steve Gold. ³This means if an individual in a nursing home wants out of the nursing home, the money that is currently being spent on that individual in the nursing home can be moved to the community.²
The other rider ³relates specifically to persons who receive community services under one of Texası Medicaid waiver programs,² says Gold. ³If those [community-based waiver] services are required for that individual to live in the most integrated setting,² says this rider, the costs of the waiver services for that one individual cannot prevent them being allowed to live in the community. A person who may cost more to live in the community than a nursing home can receive those community services as long as the ³aggregate² cost to the state is not higher than the federal government allows.
This means people with significant disabilities can get the services they need without remaining in the nursing home just because it may ³cost² the state more to serve them in their own home than to keep them in a nursing home. ³No more discrimination because of severity of disability!² says Gold.
The victory comes after months of ³intensive, oftentimes aggressive, lobbying, education, coercing, and cajoling of the Texas legislature by the Texas disability communityıs coalition,² Gold said.
Wisconsin: Legislators earmark $50 million for community services, enrage nursing home industry
In an unprecedented move, a legislative committee in early June approved $50 million in new funds over the next two years to reduce the stateıs waiting list for community-based services for seniors and people with developmental disabilities. In a move that angered the nursing home industry and counties that operate nursing homes, the Joint Finance Committee decided to tap into $108 million in federal Medicaid funds in order to meet community service needs.
Community advocates were overjoyed. Many of them rallied for increased funding at the state capitol in April. Nursing home supporters claim lawmakers are stealing from them.
Tennessee: Advocates push for more $$, reduced waiting lists
About 50 advocates for community living rallied at Nashvilleıs Legislative Plaza in early June, asking lawmakers to approve funds targeted at reducing the waiting list for community-based services. Each month about 40 people with developmental disabilities are added to the waiting list for in-home supports or other services. The list now has about 2,000 names on it.
³We have people who have been waiting five years for services,² Donald Redden, whose son has disabilities, told the Nashville Tennessean. ³To get services now, you have to get to a crisis you have to be incapacitated, hospitalized . . . or unable to care for your child.²
A bill in the current legislature would add $60 million to reduce the list. No action is expected during the remainder of the legislative session, however. ³Everybody likes the bill itıs just how itıs going to be paid for,² Redden said.
Louisiana thinks about implementing Olmstead
On May 2, the Louisiana Senate Health and Welfare Committee approved SB855, which sets up a consumer task force and a planning group to come up with a plan as well as steps to implement it.
To see how other states are responding, check out the March 2001 status report from the National Conference of State Legislatures: ³The Statesı Response to the Olmstead Decision² at http://www.ncsl. org/programs/ health/forum/ olmsreport.htm
Information in these stories was provided by Dave Reynolds, IDE.
On the other hand
Louisiana Limits Suits Against Nursing Homes
Nursing home residents and their families will not be able to use state inspection reports as evidence in lawsuits against the facilities under a proposed bill moving through the Louisiana legislature. In May, the House Civil Law Committee overwhelmingly passed HB1798, which was written almost entirely by a lobbyist for the nursing home industry.
Activists get Bush promise to sign Olmstead order in 30 days
With hundreds of activists at the gates of the White House, ADAPT got a firm assurance from the Bush Administration in mid May that the President would sign an Executive Order to implement the Olmstead Supreme Court decision within 30 days.
Director says Californiaıs institutions will close
Institutions for Californians who have developmental disabilities will be a thing of the past, according to Clifford Allenby, director of Californiaıs Department of Developmental Services.
In a Los Angeles Times article in May about Lanterman Developmental Center, Allenby called the closing the stateıs five institutions ³inevitable.²
On February 23rd, Berkeley Assemblywoman Dion Aroner introduced a bill that would transfer resources from Californiaıs five remaining institutions, called ³developmental centers,² and use it to develop homes in the community and to improve pay for direct support staff working in the community. If it is approved, Aronerıs AB 896 would develop a unified, community-based service system out of the current dual system.
Even if AB 896 is not approved, Allenby told The Times, the institutions will gradually be closed. ³Eventually, clients will all be living in the community,² he said.
Californiaıs community-based service system for people with developmental disabilities serves about 170,000 people at an average cost of $11,700 a year per person. The state also houses about 3,800 Californians in five developmental centers, at an average of $166,753 a year per person. In other words, the state spends about 25 percent of its developmental disabilities budget on 2 percent of the people it serves.
The aging facilities themselves may help to bring about deinstitutionalization. Two of the institutions are over 100 years old. The buildings themselves are decaying and the cost to renovate them and to bring them up to code is estimated at over a billion dollars.
Dave Reynolds, Inclusion Daily Express
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Mental Retardation and the Death Penalty in the U. S. A.
by Dave Reynolds
Capital punishment is popular in the United States. Thirty-eight states plus the federal military have death penalty laws.
The death penalty is not so popular when it comes to people who have mental retardation. Even though an estimated 35 people with mental retardation have been executed under capital punishment laws since 1977, many states either do not allow such executions or are moving in that direction.
As of last August, 13 states had separate laws specifically banning the death penalty for people with mental retardation: Arkansas, Colorado, Georgia, Indiana, Kansas, Kentucky, Maryland, Nebraska, New Mexico, New York, South Dakota, Tennessee, Washington, and the District of Columbia.
Here are some recent events:
n Phoenix, Arizona In late April, Gov. Jane Hull signed a bill that bans the execution of criminals that have mental retardation. Senate Bill 1551 sets stringent requirements for demonstrating mental retardation, including evidence that the condition began before the defendant was 18 years old.
n Tallahassee, Florida With a 110-1 vote, the state House on May 4 passed a ban on executions of prisoners who have mental retardation. The Senate passed the same bill unanimously in March. The measure now goes to Governor Jeb Bush, who had said he would not allow the execution of convicts who have mental retardation, with or without the bill. The legislation takes into account an inmateıs ³intellectual functioning and behavior,² but does not include IQ scores in the criteria. A hearing would take place after the personıs conviction to determine whether the person has mental retardation.
n Austin, Texas A Senate panel voted on May 8 to ban the execution of capital murderers with mental retardation. Under the measure, a court would determine whether a person accused of committing a capital murder is able to understand the consequences of the crime. If the person fits the legal definition of having mental retardation, the most severe punishment he or she could possibly get would be life in prison. Unlike the state of Florida, this would happen before the actual trial to decide whether the person is guilty.
n Raleigh, North Carolina On April 23, the state Senate voted 31-18 to bar the execution of people with mental retardation. The legislation would prohibit prosecutors from seeking the death penalty for anyone who has an IQ of 70 or below. Such a level of intelligence must be documented before age 18, most likely with a test taken in school. The measure must be passed by the House and signed by the governor.
n Carson City, Nevada By a 28-11 vote, the state Assembly on April 24 passed a measure that would prevent the execution of anyone a judge deems has an intelligence quotient of 70 or less. One legislator who supported Assembly Bill 353, mentioned that she is a special education teacher. She explained that mental retardation has been clearly defined by law for the last 40 years. ³It is very much an illness,² she said. ³It is very much a disease.² (Editorıs note: Actually, mental retardation has been clearly defined as not being an illness or a disease for the last 40 years.)
n Jefferson City, Missouri Lawmakers last week approved a ban on executing people who have mental retardation. The legislation now goes to Governor Bob Holden for his signature. Measures passed by the state House and Senate do not specify an IQ threshold, but instead define mental retardation as ³substantial limitations in general functioning² with ³significantly sub-average intelligence.² To be spared the death penalty, the person must have been younger than 18 when the condition was documented.
n Hartford Connecticutt A Quinnipiac University poll of 910 registered voters last month found that although supporters of the death penalty outnumber opponents by a ratio of 2 to 1, more than three-quarters, 77 percent, of respondents said they oppose the death penalty for people with mental retardation. The poll shows support for a bill sent to the Senate two weeks ago that would exclude mentally retarded people from being sentenced to death.
Is it ³Cruel and Unusual Punishment²?
John Paul Penry was convicted in 1980 of stabbing a woman to death with a pair of scissors. Penryıs defenders said he had IQ scores of between 50 and 64. They said that executing Penry would be ³cruel and unusual punishment,² which is banned by the U.S. Constitution.
The U.S. Supreme Court in 1989 disagreed. The court said that society decides what is considered ³cruel and unusual punishment,² and that there was no national consensus against such executions. At that time only two states banned executions of people with mental retardation.
That consensus may now be in place, just in time for the most significant challenge in twelve years. The Supreme Court has agreed to hear arguments in the case of Ernest McCarver, a death row inmate in North Carolina, who two months ago came within hours of being executed for murdering a coworker.
A decision is expected next year.
Read more about the death penalty as it relates to people with mental retardation at the Inclusion Daily Express web site http://www.InclusionDaily.com/news/deathpenalty.htm
Dave Reynolds edits the Inclusion Daily website at http://www.inclusiondaily.com
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³When the student is ready, the teacher will appear.²
Sometimes the teacher shows up without announcing herself and without explaining that she is the teacher and you are the student.
Twelve years ago, Darlene taught me a valuable lesson about discrimination and justice. I also learned that the most difficult advocacy work involves stopping to listen and being willing to look hard at ourselves.
The story is full of irony. That, of course, is why it had such an impact on me.
Lesson Learned: Injustices in the System
By Dave Reynolds
"How dare they?²
I could hear her voice tremble.
³How dare they?²
It was clear that Darlene was angry.
Sitting in the front seat of the caseworkerıs car, I turned myself to better see Darlene. She was riding in the backseat as we pulled out of the parking lot at the county jail.
Thatıs when I noticed she was crying.
³How dare they treat me differently?²
What she had done was wrong and she knew it. But now she was being wronged. And she knew that, too. And even though we were driving her away from the jail, she felt trapped.
I did understand. At least I had thought I understood.
But Darlene was about to teach me about the justice system and how justice is and is not applied to people labeled as having mental retardation. What she did that day twelve years ago also helped me to look more closely at myself and more clearly define my role as a community advocate.
The story is full of irony. That, of course, is why it had such an impact on me.
I was just 30 years old and was full of myself. A few weeks earlier I had landed my first management position for an agency that got money from the state to help people (who were called ³consumers² or ³clients²) to learn ³marketable job skills² and ³appropriate work habits.² Part of my job was to make sure nobody got hurt, particularly the consumers, many of whom also worked for the agency.
For each consumer there was a private file folder in the agencyıs office full of forms with words like ³developmentally disabled,² ³mental retardation,² ³cerebral palsy,² ³low cognitive functioning,² ³autistic,² and so forth typewritten on them.
One consumer was a 28-year-old woman in her mid-twenties who I will call Darlene (to protect her privacy I am not using her real name). Even though Darlene had been with the program for just a few months, her file was thicker than almost anybody elseıs. Many of the forms in her folder included an additional phrase: ³behavior problems.² This meant that people were very interested in what she did. Mostly, people were interested in having her not do what she did. But I didnıt need to read her file to learn anything about Darlene. Program staff told me a lot about her my very first day on the job.
Darlene hurt people. And I mean, really hurt people. This 5-foot-9-inch-tall, 200-pound woman had a well-documented history of pulling peopleıs hair, knocking them to the ground, punching them in the face, kicking them in the stomach, and throwing things such as tables and chairs at them. One staff member told me she pulled a time clock off the wall and hurled it across a break room during an outburst.
The ³behavior² that made her famous, though, was biting.
What confused most of the social service people in Darleneıs life was the strange fact that she usually hurt the people she liked the most. It was especially troubling for me because I always wanted everybody to like me. Darlene was charming and loved to talk to people in charge, so staying distant from her was not easy, but being nice to her could be dangerous.
Worse yet, I knew Darlene had the power to make me look like I didnıt know what I was doing, which, of course, was the truth.
One of my staff members, a supervisor on an assembly line whom Iıll call Shelly, liked Darlene. Shelly knew all about Darleneıs history. She knew about the ³critical incident reports,² the ³behavior modification programs,² and how Darlene often assaulted people who grew attached to her. What concerned me the most was that Shelly was a tiny woman, with about 120 pounds on her 5-foot 2-inch-tall frame, who walked with a noticeable limp.
None of that mattered to Shelly. In spite of Darleneıs reputation, Shelly often got together with her in the evenings or on weekends not as ³consumer² and ³staff,² but actually as friends. They went to movies, to concerts, and occasionally snuck off to the Sizzler for steak and french fries, which was a definite ³no-no² as far as Darleneıs group home was concerned.
It was very clear that these two young ladies enjoyed each otherıs company. Thank goodness the program I worked for actually encouraged such relationships. Few programs do.
One day at work, Darlene got up from her workbench, walked slowly over to Shelly and reached out to gently touch her shoulder as if to get her attention. Shelly looked back at Darlene and smiled.
Thatıs when it happened.
Darlene reached behind the base of Shellyıs neck and grabbed a handful of her long hair. In one quick movement, she suddenly pulled Shelly down to the floor and sat on top of her.
Then Darlene leaned down and bit her supervisorıs nose.
A few moments later Darlene stood back up, as did Shelly, whose face was bleeding.
Thatıs when Shelly did what was almost unheard of in the world of human services: She called the police and filed assault charges against her consumer, employee and friend.
The police arrested Darlene and took her to the county jail. The district attorney learned that Darlene had mental retardation and had lived in the state institution until just a few months earlier. He decided it was an ³internal matter² and had Darlene released to the supervision of her group home.
The next morning, Darleneıs caseworker phoned to tell me that Darlene was back at the county jail. She was not being held by police, but apparently had walked across town to the jail on her own.
When the caseworker and I arrived at the jailhouse, Darlene was in the lobby, walking back and forth demanding to be let inside to the cellblock.
This made no sense to me. Why would anybody who had just gotten out of the institution want to go to jail?
We managed to calm her down enough to get her to go back with us to the caseworkerıs office.
³How dare they treat me differently?²
She now sobbed in the back of the seat as we headed back across town.
³They think Iım stupid! They think I donıt know what Iım doing! They think I donıt know what theyıre doing!
³Whatıs the matter with them? Why wonıt they listen to me?
³Itıs discrimination!²
Thatıs when it started to sink in. Thatıs when I learned Lesson One in Darleneıs course on justice:
³Discrimination is discrimination.²
No matter how we dressed it up, no matter what words we use to hide what it really is, no matter what reasons we give to make us all feel better, discrimination is discrimination. Treating people differently simply because they have a label of ³mental retardation,² or ³disability,² or because they have spent time in an institution, is discrimination.
Darlene understood that her rights had been taken away, not because she had committed a crime, but because she was different.
Of course, her legal right to face her accuser and to tell her story in an open court had been taken away. More importantly for Darlene, however, was the right to face the consequences of her actions, so she could deal with her own emotional pain and move on. For reasons that may or may not be clear to anyone, Darlene had suddenly injured a person she loved dearly. Worse yet, she had violently damaged an important relationship that had taken months to grow.
And it was not the first time. Through the years, she had hurt people she liked people who liked her. The consequence was usually the same: She was forced to apologize and then was removed from the people she had hurt and put in ³time out.² The institution had been her ultimate ³time out.² Out here in the community, jail or prison is the ultimate ³time out.²
Only by going to jail the communityıs version of ³time out² could she hope to set things straight with her friend. Only by spending time behind bars could she hope to push away the incredible loneliness and despair that had been with her most of her life.
Along with her rights, her hope was being taken away from her simply because she was different.
And that was one reason why she showed up at the county jail that morning demanding to be let inside.
There may be other reasons, some of which I want to explore. But first, I want to tell you that this story did have an unusual, yet happy ending. Since the district attorney had the charges dropped, those who knew Darlene arranged an informal hearing. Darlene was able to confront her accuser. She was able to confess and to apologize. She begged to have a chance to set things right, to do Shellyıs laundry, wash her car, braid her hair anything to make amends and gain Shellyıs friendship and trust.
Amazingly, Shelly refused. She refused to accept Darleneıs apology. She refused to let Darlene do anything for her. She refused to work with her ever again.
Even though Shelly loved Darlene, she told her she simply did not trust her. It did not matter to Shelly if Darlene had a label of ³mental retardation² or ³consumer² or even ³employee.² She had no reason to treat Darlene any differently than any other person who had hurt her.
In a strange way, that may have been the best thing that had ever happened to Darlene. The consequence of her action was that her friend did not trust her any more. She could do nothing to change that.
I have no idea if Shelly and Darlene ever mended their relationship. But a few years later, I talked with somebody who knew Darlene. It sounded like she was an entirely different person. She had learned how to let people know what she was feeling without sinking her teeth into them. She was working at a grocery store and was considered a model employee. She enjoyed her work and her coworkers enjoyed working with her.
They had no idea she had ever bit or hit another person.
Looking at ourselves
During much of Darlene's life, few people in the institution had taken the time to listen to her. As it turned out, those of us in the community system, including myself, were not doing any better. We believed, as I still do, that nobody should have to live in an institution, and that segregation is one of the worst forms of discrimination. The sad truth is that we did not want to look at ourselves. We were not ready to face the fact that our community service system had problems of its own that needed attention.
If we had listened to Darlene we might have learned that her move to the community, and the freedom we so strongly value, was far from liberating.
Darlene had moved out of the institution with about a dozen other people, and half of them became housemates in her new group home. Within the few months after moving to the home, two of her friends were taken back to the state institution because of ³inappropriate behavior.² Each time, the staff threatened Darlene that if she did not ³behave² she would also be sent back to the institution. As time went on the threats became more frequent and she got more stressed.
We learned later that Darleneıs roommate had been moved back to the institution the night before Darlene bit Shelly. One staff member told Darlene, ³Youıll be next if you cause any trouble.²
If we had listened we might have realized that controlling her own ³time out² by going to jail was better for her than waiting for others to do what she considered unavoidable. Darlene was not afraid of going to jail. Being locked up was familiar to her. She had spent more than half of her 28 years in the stateıs largest institution.
Finally, if we had listened we might have learned of the real injustices she endured from within our own community service system.
Early on the morning of the assault, a man living in the group home next door to Darleneıs was treated at the hospital for injuries to his mouth, including broken teeth. A roommate later said that a male staff member had shoved the victim from behind, causing him to fall onto the sidewalk face first.
The staff member was fired from the agency, which itself was shut down a couple of weeks later. The worker did not face any criminal assault charges, however.
The only witness was the victimıs roommate a man labeled as having ³moderate mental retardation,² who had just recently been released from the stateıs largest institution.
Who would listen to him? Who would believe him?
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Supreme Court Saves Penry Again
For the second time in 12 years, the U.S. Supreme Court has thrown out a Texas death sentence for convicted murderer John Paul Penry. And for the second time the courtıs decision was based on confusing instructions given to jury members regarding Penryıs mental retardation and the abuse he experienced as a child.
In a 6-3 decision, the court ruled June 4 that during the sentencing phase of Penryıs second murder trial, jurors were given ³illogical² and ³internally contradictory² instructions which placed them in an ³impossible situation.²
In 1979, a jury convicted Penry of raping and stabbing to death Pamela Moseley Carpenter. During that trial, jury members were told that Penry scored between 51 and 63 on IQ tests, well below the 70 mark considered by most experts to indicate mental retardation. The jurors had also learned how Penryıs mother had burned, cut and dropped him, and had forced him to drink his own urine and eat his own feces.
When it came time for the jury to decide Penryıs punishment, the judge gave them specific instructions and a set of ³special issues² to consider. However, those instructions did not leave any room for them to consider his mental retardation and abuse when deciding whether to sentence him to death or to life in prison. Following the directions they were given, that jury agreed on the death penalty for Penry.
Penryıs defenders appealed the decision to the U.S. Supreme Court, which ruled in 1989 that the judge should have given the jury clearer instructions and should have explained that they could consider Penryıs life history as ³mitigating² circumstances. The Supreme Court threw out the death sentence. (On another issue argued by Penryıs defenders, the 1989 Supreme Court decided that the death penalty for people with mental retardation was not ³cruel and unusual² punishment prohibited by the Eighth Amendment.)
Penry was retried in 1990. Again, the jury found him guilty of raping and murdering Carpenter, and sentenced him to die.
He was literally within a few hours of his scheduled execution last November when the U.S. Supreme Court granted him a stay so it could hear defense claims that the second trial had been botched too.
Juneıs ruling was written by Justice Sandra Day OıConnor, who also wrote the 1989 Penry decision. The majority on the Court ruled that the judge in Penryıs second trial gave the jury the exact same instructions as the first judge had given 11 years earlier. However, the 1990 judge made things more confusing when he gave jurors an additional set of instructions. Those instructions ³made the jury charge as a whole internally contradictory, and placed law-abiding jurors in an impossible situation,² OıConnor wrote.
Penryıs life has been spared for now, but there is still a chance that he could be tried, convicted and sentenced a third time.
The Texas House and Senate passed a bill in May that would ban executions by people considered to have mental retardation. The measure becomes law by June 17, if Governor Rick Perry does not veto it. Perry has indicated that he will veto the bill.
You can read the U.S. Supreme Courtıs decision in Penry v. Johnson at http://laws.findlaw.com/us/000/00-6677.html
Dave Reynolds
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The New Death Penalty Bans: Can We Have It Both Ways?
By Dave Reynolds
In 1977 the U.S. Supreme Court determined that the death penalty was not ³cruel and unusual punishment² as defined under the Eighth Amendment to the Constitution. Twelve years later, the high court ruled that the death penalty for people considered to have mental retardation also was not ³cruel and unusual punishment."
At that time only two states that had the death penalty specifically banned execution of convicts who have mental retardation. As of this writing, 14 of the 38 states with a death penalty have ruled it out for inmates with mental retardation. Several other states are considering similar measures.
This is certainly good news for those inmates, their supporters, and people considered to have mental retardation that may be accused of capital crimes now or in the future. It is also good news for lawmakers, judges, prosecutors, jurors and much of the American public who now have a relatively simple answer to a very complicated issue.
What does this mean for other people that have been labeled as having mental retardation or other disabilities but are law-abiding citizens?
I worry that the trend toward banning executions for this one group of people actually has the potential to set disability rights, particularly the self-advocacy movement, back a couple of decades. I am also concerned that the ways in which it is decided who lives and who dies is unfair and discriminatory.
Before going any further I need to explain that I oppose the death penalty and think it should be banned across the country. Perhaps if a loved one of mine had died violently I would feel differently, but as it is I can find no good reason to support it. Capital punishment is a barbaric practice for a society that considers itself ³civilized.²
It is also not given fairly. Minorities and people who grow up in poverty are executed much more often than whites and those who have money. As technology improves, we are seeing more and more cases where people who had been convicted and sentenced to death were later cleared through DNA tests, or from confessions from the real killers. We often read or hear about people who were ³framed,² or were with the ³wrong bunch of people² at the wrong time.
The United States prides itself on fairness and justice and as Americans we feel particularly bad about executing innocent people. We also feel bad about executing people who commit a crime, but who might not have realized that what they did was wrong, did not understand the consequences of what they did, or who do not understand the legal system enough to defend themselves.
Defense attorneys are chosen and are given the moral, legal, and ethical obligation to defend their clients to the best of their ability. This means pleading their defendantıs case before judges and juries. In recent cases, defenders have also appealed to state legislators, the public, the media and Supreme Court justices.
Some of the current and proposed laws simply use an IQ score to determine whether a defendant is competent. If the person scored below a certain number, they are not put on the executionerıs list. In other states, defense attorneys have to work harder to prove that the accused has mental retardation and does not fully understand what they were doing or what the results of those actions would be.
This issue about competence gets us into trouble: The self-determination movement is based on the assumption that people are competent enough to guide their own lives, regardless of their label or ³level² of disability. The ³ban-the-death-penalty-for-the-mentally-retarded² movement is based on the assumption that people labeled as having mental retardation are not competent.
What happens when we try to have it both ways?
When a convict is considered to have mental retardation, defenders try to make the audience feel pity and guilt, by showing the person as helpless and child-like. After all, no judge or jury would want to give a lethal injection to a child. Missouri death row inmate Antonio Richardson is often referred to as ³a 26-year-old man with the mind of a 6-year-old child.² Convicted murderer John Penry is quoted as believing in Santa Claus and described as enjoying drawing stick figures with crayons. The focus on what the person cannot do in order to give the impression he cannot do anything, let alone kill somebody.
Efforts to rescue these convicts by showing them as stupid or childish strengthen the negative stereotypes that we have been trying to get rid of for so long. How can that possibly be a positive thing for, as an example, a 26-year-old woman with a label of ³mild mental retardation,² who is trying desperately to advocate for herself, to have some independence and control over her life? How can she convince those around her that she knows what is best for herself, if by association she is seen as a ³child in an adult body²?
Another problem with singling out one group of people is that it reinforces the idea that people labeled as having mental retardation are ³special² and ought to have ³special² treatment. After decades of working toward equality, the bans on death sentences for one specific group further separate people from one another and widen the ³Us versus Them² gap.
These new laws also reinforce the public perception that all a convict has to do to stay alive is ³cheat² by pretending to have mental retardation or to be an underachiever during or before IQ testing. While this may rarely happen, recent news events where people have successfully faked having a disability have strengthened this idea. If ten men without disabilities can successfully win gold medals as members of Spainıs ³intellectually disabled² Paralympic basketball team, what might a person do to save his own life?
Some states choose the IQ test, or a battery of other ³objective² standardized tests, because it is considered by many experts to be a fair and impartial tool to decide if the person has mental retardation. After all, outside the criminal justice system such tests have been used for millions of people to determine who would or would not be eligible for government benefits or services.
Usually, but not always, a person who scores at or below 70 is considered to have mental retardation. So in death penalty cases, a person scoring 68 lives, while a person scoring 72 dies. That can be hard to figure out for somebody like Oliver David Cruz who scored 63 on an IQ test one time and 76 another. (Incidentally, Cruz, a Texas death row inmate executed last August, was reported to have said that he would rather die than be called ³retarded.²)
There are two big problems with taking a tool designed to determine eligibility for services, and using it to decide if a person was competent enough to face the ultimate punishment.
One is that standardized testing is far from objective. Test scores can reflect the skills, attitudes or motives of the tester more than we would want to believe. Iıve seen it myself. A simple nod here, or a smile or frown there from the person giving the test could make the difference of several points, whether the test-giver realizes it or not. Also, I have personally known of many cases where a professional admitted to deliberately ³fudging² scores in order to help an adult or a child qualify for services.
Of course, defense attorneys, prosecutors and judges often bring in specialists who know how to administer such tests in a professional manner. But, to keep ³cheating² at a minimum, many states require the ³evidence² of whether the person has mental retardation to have been documented any time before he or she was 18 or 21. Does it make sense to base a life or death decision on, for example, a test done 25 years ago by an elementary school teacher who may have ³fudged² a studentıs test score to show others how good a teacher she was?
Another problem is that even if these tests were objective, they could not determine whether the person was innocent or competent. My own experience has shown me that IQ scores are only good at telling how well a person does on IQ tests. Not much more, not much less.
Iıve known people that were labeled as being in the ³severe level of mental disability² who were much more skilled at understanding human behavior than the PhDs administering the tests. Iıve also known so-called ³geniuses² with IQ scores above 140 who did not understand the difference between right and wrong or the consequences of their actions. I donıt know anybody who understands the criminal justice system.
There are countless examples of people labeled with mental retardation who have confessed to crimes they did not commit, who were represented by incompetent attorneys, who did not understand their rights under the legal system, or who were ³framed² by others. However, there are countless examples of people without those labels who have experienced the same types of injustices.
So, while there is a death penalty, there do need to be safeguards in place within the legal system to keep people who have disabilities from being treated unfairly. And we do need to work toward there being a level playing field.
But to say those injustices happen because these convicts are incompetent, helpless and child-like, insults not only them, but also people with disabilities who are making good choices every day.
When we make ³special² laws and say this person lives because of his ³competency² score and this one dies because of his, we throw up more barriers for people who struggle to get others to recognize their abilities and the right to direct their own lives.We canıt have it both ways.
Discrimination is, after all, discrimination.
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Adult Protective Services Versus Jerry Chenoweth
By Laura Hershey
All Jerry Chenoweth wants is to be left alone. But that desire is currently in conflict with a system that wants to protect him from himself.
After six years of living in nursing homes, Chenoweth, 42, wants the freedom to eat what he wants, smoke when and where he wants, and take a hot shower anytime he feels like it. He doesnıt want paid professionals who neither respect nor care for him to make decisions about his destiny and his daily routine. He longs for the precious privilege that almost everyone has and treasures without even realizing it: the knowledge that, when not busy scratching out some kind of living in a kitchen or a cubicle, and when the needs of loved ones have been fulfilled, a person can do what he or she wants to do.
He wants to be free.
In other words, he wants to be left alone.
Of course, as with most disabled people with all people, in fact in Jerryıs case freedom is not just a matter of living unfettered by external authority. It is that, but itıs more. To live fully free, Chenoweth needs a little help. He needs help with his medications help paying for them, and help remembering to take them on schedule. He needs some assistance with grocery shopping, and ideally, a little help with housekeeping.
Chenoweth doesnıt need much, but because his needs arise from his disability, they impact his life way out of proportion to their size. His needs got him institutionalized six years ago. Chenoweth has lived with HIV for 22 years. ³As soon as they found out what the AIDS virus was, thatıs when they found out I had it,² he says.
In February, he made a decision which sounds perfectly reasonable to Jerryıs friends and supporters here in the Denver metropolitan areaıs disability community, but which turned out to be monumentally controversial: He left Poplar Grove Care Center ³A.M.A.² ³against medical advice.² Some doctor who barely knows him said that he couldnıt live independently. He left anyway.
Thatıs when all bureaucratic hell broke loose.
Hereıs what happened:
In late January of this year, Chenoweth contacted members of the Colorado Cross-Disability Coalition (CCDC), asking for their help in getting out of Poplar Grove Care Center. Poplar Grove is a nursing home in Commerce City, Colorado, a suburb north of Denver, which specializes in ³behavioral care² for people diagnosed with psychiatric disabilities. (Itıs never been clear to his supporters exactly what Chenowethıs psychiatric issues might be. Poplar Grove officials have said he suffers from serious mental illness, but have never offered a documented diagnosis.)
³Heıd been trying to get out for quite some time, and nobody would help him,² says Todd Lobato, a CCDC organizer. Lobato had a long discussion with Chenoweth. ³I immediately began asking questions about his condition, and what was preventing him from leaving,² Lobato recalls. ³He was very clear about his medical diagnoses and his functional limitations. He was very aware what of what was going on. I asked him to do a few things, such as contact CAP [the Colorado AIDS Project]. Everything that I asked him to do, he absolutely 110 percent followed through with it.²
If Lobato sounds a bit obsessed with Chenowethıs level of self-awareness, itıs understandable: Ever since March 2, when Lobato and a colleague spirited Chenoweth away from Poplar Grove, the authorities have been painting Chenoweth as someone with ³poor insight into his condition, poor insight into his medical needs . . . very poor impulses . . . all of this posing a danger to himself and society,² says Lobato.
CCDC staffers saw a very different Jerry Chenoweth from the one described by nursing home and county staff. ³He clearly was capable,² says Lobato.
But APS worker Victor Montoya was able to convince a judge otherwise. Five days after Chenoweth escaped, Montoya obtained a court order granting him and the county emergency temporary guardianship of Chenoweth without any input from Chenoweth himself.
³The respondent should remain in the supervised, structured setting he is currently in until an appropriate care plan can be implemented,² the court order states. In court documents submitted by Adams County, officials warned that Chenoweth was ³being ill-advised by an advocacy group that he should leave the facility and live independently.²
Chenoweth insists that his rights were violated, because he was not notified of the court hearing in advance, and he was not present.³The judge didnıt talk to me,² says Chenoweth. ³If she had, she would have said, Victor, lay off.ı²
Citing confidentiality, Montoya refused to discuss Chenowethıs case, but he agreed to talk to Ragged Edge about adult protection laws generally. ³I really canıt talk about that situation,² Montoya says, ³but I can say that thereıs always an attempt to serve notice, to anybody, if thereıs going to be a hearing about them, so that they are aware of it, and they know that they have a right to be there.²
³That did not happen here,² says Lobato. ³They knew he was with us. They had an address, they had all of our phone numbers² yet neither Chenoweth nor his advocates were notified of the hearing, or invited to attend. The next day, however, says Lobato, ³They notified him that they were the guardian and wanted him to return to Poplar Grove immediately.²
Thus began a protracted battle, not over yet, involving legal proceedings, conflicting official statements, grass-roots advocacy and civil disobedience.
Determined to hold onto the freedom he had attained, Chenoweth refused to comply with the court order. Rather than return to institutional imprisonment, Chenoweth essentially went into hiding. Even most of his closest supporters donıt know where he lives at any given time; they only know that he is safe. He surfaces regularly to share meals and bad jokes with his friends at CCDC.
By law, a person who has been subjected to temporary guardianship has the right to request a follow-up hearing, within 10 days, to contest that decision. Chenowethıs attorney decided to ask first for a change of venue to a different jurisdiction Denver County, where heıs living now. Social Services argued that Chenoweth is still legally a resident of Poplar Grove, in Adams County, and so his case should remain there. Social Services won that round.
Meanwhile, activists were not content to leave the battle up to the lawyers. Over 30 people with disabilities and allies demonstrated on March 23 in front of the Adams County Social Services building. Carrying signs reading ³Real Homes Not Nursing Homes,² and ³We Demand Self-Determination,² and ³HIV Is Not a Crime,² the protesters marched back and forth in front of the entrance, chanting and distributing leaflets. The building was heavily guarded by police, but six or seven activists, including this writer, managed to get inside to the front lobby. We let it be known that we would stay there until we could meet with Social Services director Dr. Donald Cassata.
No such meeting was granted. Instead, an assistant director named Fred Wolf came downstairs and said he would listen to what we had to say. We left the building. Everyone assembled in the driveway outside. There, CCDCıs executive director, Julie Reiskin, and board member Mark Simon confronted Wolf with the outrageous facts of Chenowethıs case. Simon explained the many ways in which Adams County had overstepped its authority and misused Coloradoıs adult protection laws. Finally Reiskin presented the groupıs demands: that Victor Montoya be replaced by ³someone committed to independent living, someone who understands that anyone can live in the community with the proper supports²; that all Social Services staff receive training in disability rights and independent living; that Jerry Chenoweth be given a letter of apology; and that Adams County pay Chenowethıs legal fees.
After hearing the advocatesı demands, Wolf made a noncommital statement about looking into the issues. He then disappeared into the building.
Angered at this non-response, demonstrators clustered around the buildingıs doors and began blocking foot traffic. More police arrived. For several hours, the protest became a standoff: Police wouldnıt let any of us in the building, and so we wouldnıt let anyone else in or out of the building at least not without a struggle.
Ultimately, four protesters were arrested. They were driven to the police station and given summonses, charged with interfering with government business.
A handful of protesters returned again the following Monday, March 26. Their tenacity paid off: A meeting was arranged between Social Services director Cassata, CCDC director Reiskin, and Carrie Lucas, another CCDC staffer.
The meeting did not produce a final resolution, but a rather dubious offer: Adams County officials would reconsider their position if Chenoweth would agree to undergo a neuropsychiatric evaluation. At this time, Chenoweth has not decided whether to comply with this request. As Lobato points out, such an evaluation may not be relevant to independent living, because it may not consider Chenowethıs ³functional capacity things like can he cook, balance a checkbook.² Besides, thereıs no guarantee that Adams County will reverse its position, regardless of the results of an assessment.
Besides, there seems to be plenty of evidence supporting Chenowethıs ability to live independently. For one thing, heıs doing so right now and under circumstances that are far from ideal: Because he has to stay in hiding, he canıt yet get an apartment or in-home support services. (When he tried to apply for Home and Community-Based Services [HCBS], to assist with homemaking, the HCBS worker didnıt show up. Instead Montoya came to the address which Chenoweth provided, accompanied by police. Fortunately, Chenoweth was not present, and managed to evade capture one more time.)
Supporting evidence can be found even in the nursing homeıs own records. Lobato has seen and copied documents from Poplar Grove Care Center, showing Chenowethıs ongoing efforts to leave with the Centerıs blessing. In September 2000, Chenoweth placed a call to a nursing home ombudsman, telling her he wanted to move out. The ombudsman contacted Poplar Grove, urging staff to work with Chenoweth to help him prepare to leave. Nursing home staff administered a safety study, which Lobato says, Chenoweth ³passed with flying colors.² Records also noted that he was ³alert and oriented times three² medical lingo meaning that a person is aware of time, place and people. An Adams County home health agency contacted the nursing home around the same time, offering to work with them to facilitate Chenowethıs discharge, but there was apparently no follow-through by Poplar Grove staff.
Why would Adams County Social Services expend so much energy and staff time trying to prove Jerry Chenoweth incompetent, and attempting to force him back into an institution? Victor Montoya wonıt answer that question, but the other actors in this drama can speculate on some reasons.
Homophobia could be one factor, says Lobato. After all, Chenoweth is open about being a gay man with HIV.
Or, adds Lobato, the advocacy group could be the real target. ³Maybe somehow theyıre coming after CCDC because we do these prison releases all the time,² he says, ³and theyıre trying to flex some political muscle to make us back off.²
Perhaps itıs more personal, a career bureaucrat feeling offended by Chenowethıs presumptuousness in trying to run his own life. At the case conference back in February, Lobato recalls, he and the other advocates reminded everyone present that Chenoweth was responsible for himself, and could leave Poplar Grove at any time, with no oneıs permission. ³I think Montoya got a little pissed at that statement, and got a court order to say he canıt,² says Lobato.
Chenoweth has his own theory about why his right to live free is being attacked: ³Because the nursing home gets $3,400 dollars a month from the government for keeping me there.²
Laura Hershey is a freelance writer and disability activist in Colorado.
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Most of us have heard the story of the month-long sit-ins that are said to have forced the signing of the Section 504 rules back in 1977. But thereıs another story the story of how the rules got written in the first place. That happened because of a lawsuit Cherry v. Mathews. That story has never been published. Until now.
Cherry v. Mathews - 25 years and counting
by James L. Cherry, J.D., Ph.D.
In 1970 we had no right to education, to employment, to transportation, to housing or to voting. There were no civil rights laws for us, no federal advocacy grants. Few people looked beyond our medical needs.
Section 504 , the first ³civil rights act² for persons with disabilities, was modeled after Title VI of the Civil Rights Act of 1964 that prohibited discrimination against persons in federally funded programs on the basis of race, religion, national origin and creed. ³Handicapped persons² were not protected from discrimination by that 1964 law.
The Rehabilitation Act which President Nixon signed into law in September, 1973, had at its end a Section 504, which had been stealthily included because the efforts to add ³handicapped persons² to Title VI had failed. It reads, ³No otherwise qualified handicapped individual . . . shall by reason of his handicap; be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.² The section was designed to prevent discrimination against ³handicapped persons² in federally funded programs government-wide. Entities covered by Section 504 include state and local governments, schools, universities, hospitals, social service agencies, legal services offices, public housing, parks and much more.
Within a few months of enactment of Section 504, I inquired about the timeline for issuance of the 504 regulation. At the time I was a research patient at the National Institutes of Health (N.I.H.) in Bethesda, Maryland.
The responses I got from the U.S. Dept. of Health, Education and Welfare, whose job it should have been to issue the rules, were negative. DHEW contended that they had no explicit legal duty to issue a regulation under Section 504. Section 504 contained only 44 words and the legislative history was almost non-existent. DHEW spokespersons argued to me that Section 504 was a mere ³policy statement² and required no regulatory action.
I aggressively disagreed. I didnıt see mere ³policy² I saw legal rights and power; and I wanted both.
While doctors worked on unraveling the mysteries of the unspecified muscle illness that had rendered me quadriplegic, I worked on DHEW from my hospital room at NIH.
After wrangling with DHEW for months, I started contacting national disability groups and a few disabled persons in the Washington, DC area to pursue litigation against DHEW. None were interested. In fact, some were hostile toward me when I mentioned that Section 504 would provide civil rights for ³handicapped persons.² The mere mention of the connection between Section 504 and Title VI of the Civil Rights Act of 1964 proved to be a real flashpoint. The national groupsı primary efforts were directed toward fundraising, including obtaining federal funds, and providing rehabilitation-type services. The clash between a rehabilitation ideology and civil rights was real. I felt that civil rights programming should be an integral part of the rehabilitation process I have always felt that advocacy was great therapy: it energizes, enables and empowers but my viewpoint was not accepted at the time.
Between medical procedures as a research patient and my fight with the cancer that doctors discovered I had, I focused upon the fight to get a regulation for Section 504. I pursued pro bono legal counsel in the Washington, DC area and after many contacts I had the good fortune to contact the Institute for Public Representation (INSPIRE) at Georgetown University Law Center in Washington, DC; they took my case in early 1975.
INSPIRE researched my case, created legal briefs and filed legal petitions with DHEW for almost a year before we decided to sue DHEW.
When I couldnıt get a national group to join me in a court case, I asked members of the Action League for Physically Handicapped Adults ALPHA in my hometown of Louisville, Kentucky to join me as co-plaintiff. They agreed, and we launched the Section 504 case.
The Cherry v. Mathews suit was filed on Friday, February 13, 1976, and the court battle ensued. I paid the court costs from my veteranıs disability pension.
David Mathews, Secretary of HEW, was the target of my federal lawsuit. He was a rising star as the youngest president of the University of Alabama before being named DHEW Secretary. As DHEWıs Secretary he was responsible for implementing the Rehabilitation Act of 1973.
DHEWıs not-so-surprising answer to my complaint was to contend that they had no legal duty to issue Section 504 regulations. The U. S. District Court heard various motions and arguments in the ensuing months in early 1976.
The Cherry v. Mathews case was decided in my favor on July 19, 1976. U. S. District Court Judge John Lewis Smith ruled for me and ordered DHEW to develop the Section 504 regulation to prohibit discrimination against ³handicapped persons² in any federally funded program.
There was no media of the Cherry decision, except one small article in the New York Times. I pursued no media because a lot of progress was being made ³flying under the radar.² I was accustomed to aggressively pursuing local media in Louisville where we were trying to gain compliance and enforcement of state laws that were being ignored; however, the development of the Section 504 regulation was at a delicate stage and I didnıt want to alert a strong opposition.
The decision to keep quiet about my court victory was nothing more than a tactical decision in a larger strategy, because I realized that there was no real power, except the court, to back me if something went wrong. I didnıt want DHEW to come under some outside pressure and appeal my case to the U. S. Court of Appeals. They didnıt appeal, and DHEW remained under the federal court order in the Cherry case to develop and publish the Section 504 regulation. Sometimes, silence is golden.
The DHEW bureaucrats scurried around Washington crafting a version of the court-ordered regulation and tried to create some political opposition in Congress, but their efforts failed.
In January, 1977, Mathews refused to sign the prepared regulation, and we went back to the U. S. District Court, where he was held in contempt of court for refusing to follow the Cherry court order. Later that month, Jimmy Carter was sworn in as President and Joseph Califano was confirmed as Secretary of DHEW.
We then had friends in the right position. Joseph Califano was a personal friend and former law partner with Victor Kramer, my attorney and Director of INSPIRE. Joseph Califano started to assemble his all-new team at DHEW and began to review the Section 504 regulation.
But before he could finish his review and sign the new rule, disabled persons staged a sit-ins at DHEW offices in DC and around the country.
My attorneys were perplexed over the development. INSPIRE had performed pro bono legal work for over two years (and I had pursued the 504 idea for over four years), but before the final victory we were subjected to protest demonstrations. Why? Some claimed the draft regulation was being weakened by Califano. But an entire legal team at INSPIRE was working on my case with the new and friendly DHEW review team, and we had no such concerns.
The protests delayed the signing of the Section 504 regulation, but they were finally signed and became effective on May 4, 1977.
It is difficult to give credit to all of the people who played an interactive role in the development of Section 504, and who today continue to work for its enforcement compliance, although the Disability Rights Education and Defense Fund was notable in the early years, and later ADAPT emerged to pursue enforcement of the Section 504 regulation requiring access to buses. ADAPT was born to protest and their efforts have yielded positive progress in many ways as they have channeled the frustrations of many disenfranchised persons. And Georgetownıs Institute for Public Representation continues to work on disability rights issues under the leadership of Doug Parker; Professor Parker was one of the young lawyers who in 1976 and 1977 worked on my case.
Over a decade later the Americans with Disabilities Act was built upon the foundation created by the Section 504 regulation. There would be no ADA as we know it today without the Section 504 regulation, and there would not be a Section 504 regulation without Cherry v. Mathews.
The official histories of Section 504 talk about the sit-ins and demonstrations. But to understand the full history of the law, maybe this story will help: ³If you are out in a field walking along a fencerow and come upon a turtle sitting atop a post, you realize one thing the turtle didnıt get there by itself.²
Jim Cherry continues his advocacy work in Georgia as chair of the 700-member Association of Georgians with Disabilities, which makes assistive technology loans.
Editorıs note: Signing the legal papers for The Action League for Physically Handicapped Adults, who joined with Cherry in his lawsuit, was none other than Ragged Edge editor Mary Johnson, who at the time was president of ALPHA.
Section 504 a ısafety netı today
Section 504 is alive today and necessary as ever. Patricia Garrett lost her case before the U.S. Supreme Court last February under the Americans with Disabilities Act but could be afforded a safety net by Section 504.
Unfortunately, as we reported in the May, 2001 Ragged Edgeıs D.R. Nation department, the state of Arkansas has asked the high court to review the constitutionality of Section 504 as well.
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Lost Disability Classics
I first read Charlotte Perkins Gilmanıs short story, ³The Yellow Wall-paper,² in the early 1970s, in the beginning of ³the Second Wave² of feminism. We found Gilman particularly compelling because she had been a turn-of-the-century feminist that is, the turn of the 19th century to the 20th century who concerned herself not just with legal equality for women but also with the psychological, economic and social effects of womenıs oppression. Although I knew the story well, Iıd never thought of it as a story about disability, until Steve Brown of the Institute on Disability Culture suggested it for ³Lost Disability Classics.²
Gilman (1860-1935) based this story on her own years of experiencing ³a severe and continuous nervous breakdown tending to melancholia and beyond² (what we would today call depression). In her essay ³Why I Wrote The Yellow Wall-paperı² Gilman said she had consulted ³a noted specialist in nervous diseases, the best known in the country. This wise man . . . sent me home with solemn advice to live as domestic a life as far as possible, to have but two hoursı intellectual life a day,ı and never to touch pen, brush, or pencil againı as long as I lived. . . . I went home and obeyed those directions for some three months, and came so near the borderline of utter mental ruin that I could see over.²
I canıt resist sharing the following story with Edge readers: While doing background research for this introduction, I realized that Diane Price Herndlıs book Invalid Women: Figuring Feminine Illness in American Fiction and Culture, 1840-1940 included a discussion of Gilmanıs work. So I entered ³Invalid Women² into the Google internet search engine on the chance that I might be able to find an excerpt from her book or a review of it on-line. In addition to giving you specific web sites, Google also gives you the category and sub-categories into which that subject falls. Guess where the subject ³Invalid Women² falls? ³Society>Death>Suicide.²
Anne Finger
The Yellow Wall-paper
by Charlotte Perkins Gilman
It is very seldom that mere ordinary people like John and myself secure ancestral halls for the summer. A colonial mansion, a hereditary estate I would say a haunted house, and reach the height of romantic felicity but that would be asking too much of fate! Still I will proudly declare that there is something queer about it. Else, why should it be let so cheaply? And why have stood so long untenanted? John laughs at me, of course, but one expects that in marriage.
John is practical in the extreme. He has no patience with faith, an intense horror of superstition, and he scoffs openly at any talk of things not to be felt and seen and put down in figures.
John is a physician, and perhaps (I would not say it to a living soul, of course, but this is dead paper and a great relief to my mind) perhaps that is one reason I do not get well faster.
You see he does not believe I am sick! And what can one do?
If a physician of high standing, and oneıs own husband, assures friends and relatives that there is really nothing the matter with one but temporary nervous depression a slight hysterical tendency what is one to do? My brother is also a physician, and also of high standing, and he says the same thing. So I take phosphates or phosphites whichever it is, and tonics, and journeys, and air, and exercise, and am absolutely forbidden to ³work² until I am well again.
Personally, I disagree with their ideas. Personally, I believe that congenial work, with excitement and change, would do me good. But what is one to do?
I did write for a while in spite of them; but it does exhaust me a good deal having to be so sly about it, or else meet with heavy opposition. I sometimes fancy that in my condition if I had less opposition and more society and stimulus but John says the very worst thing I can do is to think about my condition, and I confess it always makes me feel bad.
So I will let it alone and talk about the house.
The most beautiful place! It is quite alone standing well back from the road, quite three miles from the village. It makes me think of English places that you read about, for there are hedges and walls and gates that lock, and lots of separate little houses for the gardeners and people.
There is a delicious garden! I never saw such a garden large and shady, full of box-bordered paths, and lined with long grape-covered arbors with seats under them.
There were greenhouses, too, but they are all broken now.
There was some legal trouble, I believe, something about the heirs and coheirs; anyhow, the place has been empty for years.
That spoils my ghostliness, I am afraid, but donıt care there is something strange about the house I can feel it.
I even said so to John one moonlight evening but he said what I felt was a draught, and shut the window.
I get unreasonably angry with John sometimes. Iım sure I never used to be so sensitive. I think it is due to this nervous condition.
But John says if I feel so, I shall neglect proper self-control; so I take pains to control myself before him, at least, and that makes me very tired.
I donıt like our room a bit. I wanted one downstairs that opened on the piazza and had roses all over the window, and such pretty old-fashioned chintz hangings! but John would not hear of it.
He said there was only one window and not room for two beds, and no near room for him if he took another.
He is very careful and loving, and hardly lets me stir without special direction.
I have a schedule prescription for each hour in the day; he takes all care from me, and so I feel basely ungrateful not to value it more.
He said we came here solely on my account, that I was to have perfect rest and all the air I could get. ³Your exercise depends on your strength, my dear,² said he, ³and your food somewhat on your appetite; but air you can absorb all the time.² So we took the nursery at the top of the house.
It is a big, airy room, the whole floor nearly, with windows that look all ways, and air and sunshine galore. It was nursery first and then playroom and gymnasium, I should judge; for the windows are barred for little children, and there are rings and things in the walls.
The paint and paper look as if a boysı school had used it. It is stripped off the paper in great patches all around the head of my bed, about as far as I can reach, and in a great place on the other side of the room low down. I never saw a worse paper in my life.
One of those sprawling flamboyant patterns committing every artistic sin.
It is dull enough to confuse the eye in following, pronounced enough to constantly irritate and provoke study, and when you follow the lame uncertain curves for a little distance they suddenly commit suicide plunge off at outrageous angles, destroy themselves in unheard of contradictions.
The color is repellent, almost revolting; a smouldering unclean yellow, strangely faded by the slow-turning sunlight.
It is a dull yet lurid orange in some places, a sickly sulphur tint in others.
No wonder the children hated it! I should hate it myself if I had to live in this room long.
There comes John, and I must put this away, he hates to have me write a word.
We have been here two weeks, and I havenıt felt like writing before, since that first day.
I am sitting by the window now, up in this atrocious nursery, and there is nothing to hinder my writing as much as I please, save lack of strength.
John is away all day, and even some nights when his cases are serious.
I am glad my case is not serious!
But these nervous troubles are dreadfully depressing.
John does not know how much I really suffer. He knows there is no reason to suffer, and that satisfies him.
Of course it is only nervousness. It does weigh on me so not to do my duty in any way!
I meant to be such a help to John, such a real rest and comfort, and here I am a comparative burden already!
Nobody would believe what an effort it is to do what little I am able, to dress and entertain, and order things.
It is fortunate Mary is so good with the baby. Such a dear baby!
And yet I cannot be with him, it makes me so nervous.
I suppose John never was nervous in his life. He laughs at me so about this wall-paper!
At first he meant to repaper the room, but afterwards he said that I was letting it get the better of me, and that nothing was worse for a nervous patient than to give way to such fancies.
He said that after the wall-paper was changed it would be the heavy bedstead, and then the barred windows, and then that gate at the head of the stairs, and so on.
³You know the place is doing you good,² he said, ³and really, dear, I donıt care to renovate the house just for a three monthsı rental.²
³Then do let us go downstairs,² I said, ³there are such pretty rooms there.²
Then he took me in his arms and called me a blessed little goose, and said he would go down to the cellar, if I wished, and have it whitewashed into the bargain.
But he is right enough about the beds and windows and things.
It is an airy and comfortable room as any one need wish, and, of course, I would not be so silly as to make him uncomfortable just for a whim.
Iım really getting quite fond of the big room, all but that horrid paper.
Out of one window I can see the garden, those mysterious deepshaded arbors, the riotous old-fashioned flowers, and bushes and gnarly trees.
Out of another I get a lovely view of the bay and a little private wharf belonging to the estate. There is a beautiful shaded lane that runs down there from the house. I always fancy I see people walking in these numerous paths and arbors, but John has cautioned me not to give way to fancy in the least. He says that with my imaginative power and habit of story-making, a nervous weakness like mine is sure to lead to all manner of excited fancies, and that I ought to use my will and good sense to check the tendency. So I try.
I think sometimes that if I were only well enough to write a little it would relieve the press of ideas and rest me.
But I find I get pretty tired when I try.
It is so discouraging not to have any advice and companionship about my work. When I get really well, John says we will ask Cousin Henry and Julia down for a long visit; but he says he would as soon put fireworks in my pillow-case as to let me have those stimulating people about now.
I wish I could get well faster.
But I must not think about that. This paper looks to me as if it knew what a vicious influence it had!
There is a recurrent spot where the pattern lolls like a broken neck and two bulbous eyes stare at you upside down.
I get positively angry with the impertinence of it and the everlastingness. Up and down and sideways they crawl, and those absurd, unblinking eyes are everywhere There is one place where two breadths didnıt match, and the eyes go all up and down the line, one a little higher than the other.
I never saw so much expression in an inanimate thing before, and we all know how much expression they have! I used to lie awake as a child and get more entertainment and terror out of blank walls and plain furniture than most children could find in a toy-store.
I remember what a kindly wink the knobs of our big, old bureau used to have, and there was one chair that always seemed like a strong friend.
I used to feel that if any of the other things looked too fierce I could always hop into that chair and be safe.
The furniture in this room is no worse than inharmonious, however, for we had to bring it all from downstairs. I suppose when this was used as a playroom they had to take the nursery things out, and no wonder! I never saw such ravages as the children have made here.
The wall-paper, as I said before, is torn off in spots, and it sticketh closer than a brother they must have had perseverance as well as hatred.
Then the floor is scratched and gouged and splintered, the plaster itself is dug out here and there, and this great heavy bed which is all we found in the room, looks as if it had been through the wars.
But I donıt mind it a bit only the paper.
There comes Johnıs sister. Such a dear girl as she is, and so careful of me! I must not let her find me writing.
She is a perfect and enthusiastic housekeeper, and hopes for no better profession. I verily believe she thinks it is the writing which made me sick!
But I can write when she is out, and see her a long way off from these windows.
There is one that commands the road, a lovely shaded winding road, and one that just looks off over the country. A lovely country, too, full of great elms and velvet meadows.
This wall-paper has a kind of sub-pattern in a, different shade, a particularly irritating one, for you can only see it in certain lights, and not clearly then.
But in the places where it isnıt faded and where the sun is just so I can see a strange, provoking, formless sort of figure, that seems to skulk about behind that silly and conspicuous front design.
Thereıs sister on the stairs!
Well, the Fourth of July is over! The people are all gone and I am tired out. John thought it might do me good to see a little company, so we just had mother and Nellie and the children down for a week.
Of course I didnıt do a thing. Jennie sees to everything now.
But it tired me all the same.
John says if I donıt pick up faster he shall send me to Weir Mitchell in the for m
But I donıt want to go there at all. I had a friend who was in his hands once, and she says he is just like John and my brother, only more so!
Besides, it is such an undertaking to go so far.
I donıt feel as if it was worth while to turn my hand over for anything, and Iım getting dreadfully fretful and querulous.
I cry at nothing, and cry most of the time.
Of course I donıt when John is here, or anybody else, but when I am alone.
And I am alone a good deal just now. John is kept in town very often by serious cases, and Jennie is good and lets me alone when I want her to.
So I walk a little in the garden or down that lovely lane, sit on the porch under the roses, and lie down up here a good deal.
Iım getting really fond of the room in spite of the wall-paper. Perhaps because of the wall-paper.
It dwells in my mind so!
I lie here on this great immovable bed it is nailed down, I believe and follow that pattern about by the hour. It is as good as gymnastics, I assure you. I start, weıll say, at the bottom, down in the corner over there where it has not been touched, and I determine for the thousandth time that I will follow that pointless pattern to some sort of a conclusion.
I know a little of the principle of design, and I know this thing was not arranged on any laws of radiation, or alternation, or repetition, or symmetry, or anything else that I ever heard of.
It is repeated, of course, by the breadths, but not otherwise.
Looked at in one way each breadth stands alone, the bloated curves and flourishes a kind of ³debased Romanesque² with delirium tremens go waddling up and down in isolated columns of fatuity.
But, on the other hand, they connect diagonally, and the sprawling outlines run off in great slanting waves of optic horror, like a lot of wallowing seaweeds in full chase.
The whole thing goes horizontally, too, at least it seems so, and I exhaust myself in trying to distinguish the order of its going in that direction.
They have used a horizontal breadth for a frieze, and that adds wonderfully to the confusion.
There is one end of the room where it is almost intact, and there, when the crosslights fade and the low sun shines directly upon it, I can almost fancy radiation after all, the interminable grotesques seem to form around a common centre and rush off in headlong plunges of equal distraction.
It makes me tired to follow it. I will take a nap I guess.
donıt know why I should write this.
I donıt want to.
I donıt feel able. And I know John would think it absurd. But I must say what I feel and think in some way it is such a relief!
But the effort is getting to be greater than the relief.
Half the time now I am awfully lazy, and lie down ever so much.
John says I mustnıt lose my strength, and has me take cod liver oil and lots of tonics and things, to say nothing of ale and wine and rare meat.
Dear John! He loves me very dearly, and hates to have me sick. I tried to have a real earnest reasonable talk with him the other day, and tell him how I wish he would let me go and make a visit to Cousin Henry and Julia.
But he said I wasnıt able to go, nor able to stand it after I got there; and I did not make out a very good case for myself, for I was crying before I had finished.
It is getting to be a great effort for me to think straight. Just this nervous weakness I suppose.
And dear John gathered me up in his arms, and just carried me upstairs and laid me on the bed, and sat by me and read to me till it tired my head.
He said I was his darling and his comfort and all he had, and that I must take care of myself for his sake, and keep well.
He says no one but myself can help me out of it, that I must use my will and self-control and not let any silly fancies run away with me.
Thereıs one comfort, the baby is well and happy, and does not have to occupy this nursery with the horrid wall-paper.
If we had not used it, that blessed child would have! What a fortunate escape! Why, I wouldnıt have a child of mine, an impressionable little thing, live in such a room for worlds.
I never thought of it before, but it is lucky that John kept me here after all, I can stand it so much easier than a baby, you see.
Of course I never mention it to them any more I am too wise, but I keep watch of it all the same.
There are things in that paper that nobody knows but me, or ever will.
Behind that outside pattern the dim shapes get clearer every day.
It is always the same shape, only very numerous.
And it is like a woman stooping down and creeping about behind that pattern. I donıt like it a bit. I wonder I begin to think I wish John would take me away from here!
It is so hard to talk with John about my case, because he is so wise, and because he loves me so.
But I tried it last night.
It was moonlight. The moon shines in all around just as the sun does.
I hate to see it sometimes, it creeps so slowly, and always comes in by one window or another.
John was asleep and I hated to waken him, so I kept still and watched the moonlight on that undulating wall-paper till I felt creepy.
The faint figure behind seemed to shake the pattern, just as if she wanted to get out.
I got up softly and went to feel and see if the paper did move, and when I came back John was awake.
³What is it, little girl?² he said. ³Donıt go walking about like that youıll get cold.²
I thought it was a good time to talk, so I told him that I really was not gaining here, and that I wished he would take me away.
³Why darling!² said he, ³our lease will be up in three weeks, and I canıt see how to leave before.
³The repairs are not done at home, and I cannot possibly leave town just now. Of course if you were in any danger, I could and would, but you really are better, dear, whether you can see it or not. I am a doctor, dear, and I know. You are gaining flesh and color, your appetite is better, I feel really much easier about you.²
³I donıt weigh a bit more,² said I, ³nor as much; and my appetite may be better in the evening when you are here, but it is worse in the morning when you are away!²
³Bless her little heart!² said he with a big hug, "²she shall be as sick as she pleases! But now letıs improve the shining hours by going to sleep, and talk about it in the morning!²
³And you wonıt go away?² I asked gloomily.
³Why, how can I, dear? It is only three weeks more and then we will take a nice little trip of a few days while Jennie is getting the house ready. Really dear you are better!²
³Better in body perhaps ² I began, and stopped short, for he sat up straight and looked at me with such a stern, reproachful look that I could not say another word.
³My darling,² said he, ³I beg of you, for my sake and for our childıs sake, as well as for your own, that you will never for one instant let that idea enter your mind! There is nothing so dangerous, so fascinating, to a temperament like yours. It is a false and foolish fancy. Can you not trust me as a physician when I tell you so?²
So of course I said no more on that score, and we went to sleep before long. He thought I was asleep first, but I wasnıt, and lay there for hours trying to decide whether that front pattern and the back pattern really did move together or separately.
On a pattern like this, by daylight, there is a lack of sequence, a defiance of law, that is a constant irritant to a normal mind.
The color is hideous enough, and unreliable enough, and infuriating enough, but the pattern is torturing.
You think you have mastered it, but just as you get well underway in following, it turns a back somersault and there you are. It slaps you in the face, knocks you down, and tramples upon you. It is like a bad dream.
The outside pattern is a florid arabesque, reminding one of a fungus. If you can imagine a toadstool in joints, an interminable string of toadstools, budding and sprouting in endless convolutions why, that is something like it.
That is, sometimes!
There is one marked peculiarity about this paper, a thing nobody seems to notice but myself, and that is that it changes as the light changes.
When the sun shoots in through the east window I always watch for that first long, straight ray it changes so quickly that I never can quite believe it.
That is why I watch it always.
By moonlight the moon shines in all night when there is a moon I wouldnıt know it was the same paper.
At night in any kind of light, in twilight, candle light, lamplight, and worst of all by moonlight, it becomes bars! The outside pattern I mean, and the woman behind it is as plain as can be.
I didnıt realize for a long time what the thing was that showed behind, that dim sub-pattern, but now I am quite sure it is a woman.
By daylight she is subdued, quiet. I fancy it is the pattern that keeps her so still. It is so puzzling. It keeps me quiet by the hour.
I lie down ever so much now. John says it is good for me, and to sleep all I can.
Indeed he started the habit by making me lie down for an hour after each meal.
It is a very bad habit I am convinced, for you see I donıt sleep.
And that cultivates deceit, for I donıt tell them Iım awake O no!
The fact is I am getting a little afraid of John.
He seems very queer sometimes, and even Jennie has an inexplicable look.
It strikes me occasionally, just as a scientific hypothesis, that perhaps it is the paper!
I have watched John when he did not know I was looking, and come into the room suddenly on the most innocent excuses, and Iıve caught him several times looking at the paper! And Jennie too. I caught Jennie with her hand on it once.
She didnıt know I was in the room, and when I asked her in a quiet, a very quiet voice, with the most restrained manner possible, what she was doing with the paper she turned around as if she had been caught stealing, and looked quite angry asked me why I should frighten her so!
Then she said that the paper stained everything it touched, that she had found yellow smooches on all my clothes and Johnıs, and she wished we would be more careful!
Did not that sound innocent? But I know she was studying that pattern, and I am determined that nobody shall find it out but myself!
Life is very much more exciting now than it used to be. You see I have something more to expect, to look forward to, to watch. I really do eat better, and am more quiet than I was.
John is so pleased to see me improve! He laughed a little the other day, and said I seemed to be flourishing in spite of my wall-paper.
I turned it off with a laugh. I had no intention of telling him it was because of the wall-paper he would make fun of me. He might even want to take me away.
I donıt want to leave now until I have found it out. There is a week more, and I think that will be enough.
Iım feeling ever so much better! I donıt sleep much at night, for it is so interesting to watch developments; but I sleep a good deal in the daytime.
In the daytime it is tiresome and perplexing.
There are always new shoots on the fungus, and new shades of yellow all over it. I cannot keep count of them, though I have tried conscientiously.
It is the strangest yellow, that wall-paper! It makes me think of all the yellow things I ever saw not beautiful ones like buttercups, but old foul, bad yellow things.
But there is something else about that paper the smell! I noticed it the moment we came into the room, but with so much air and sun it was not bad. Now we have had a week of fog and rain, and whether the windows are open or not, the smell is here.
It creeps all over the house.
I find it hovering in the dining-room, skulking in the parlor, hiding in the hall, lying in wait for me on the stairs.
It gets into my hair.
Even when I go to ride, if I turn my head suddenly and surprise it there is that smell!
Such a peculiar odor, too! I have spent hours in trying to analyze it, to find what it smelled like.
It is not bad at first, and very gentle, but quite the subtlest, most enduring odor I ever met.
In this damp weather it is awful, I wake up in the night and find it hanging over me.
It used to disturb me at first. I thought seriously of burning the house to reach the smell.
But now I am used to it. The only thing I can think of that it is like is the color of the paper! A yellow smell.
There is a very funny mark on this wall, low down, near the mopboard. A streak that runs round the room. It goes behind every piece of furniture, except the bed, a long, straight, even smooch, as if it had been rubbed over and over.
I wonder how it was done and who did it, and what they did it for. Round and round and round round and round and round it makes me dizzy !
really have discovered something at last.
Through watching so much at night, when it changes so, I have finally found out.
The front pattern does move and no wonder! The woman behind shakes it!
Sometimes I think there are a great many women behind, and sometimes only one, and she crawls around fast, and her crawling shakes it all over.
Then in the very bright spots she keeps still, and in the very shady spots she just takes hold of the bars and shakes them hard.
And she is all the time trying to climb through. But nobody could climb through that pattern it strangles so; I think that is why it has so many heads.
They get through, and then the pattern strangles them off and turns them upside down, and makes their eyes white!
If those heads were covered or taken off it would not be half so bad.
think that woman gets out in the daytime!
And Iıll tell you why privately Iıve seen her!
I can see her out of every one of my windows!
It is the same woman, I know, for she is always creeping, and most women do not creep by daylight.
I see her on that long road under the trees, creeping along, and when a carriage comes she hides under the blackberry vines.
I donıt blame her a bit. It must be very humiliating to be caught creeping by daylight!
I always lock the door when I creep by daylight. I canıt do it at night, for I know John would suspect something at once.
And John is so queer now, that I donıt want to irritate him. I wish he would take another room! Besides, I donıt want anybody to get that woman out at night but myself.
I often wonder if I could see her out of all the windows at once.
But, turn as fast as I can, I can only see out of one at one time.
And though I always see her, she may be able to creep faster than I can turn!
I have watched her sometimes away off in the open country, creeping as fast as a cloud shadow in a high wind.
If only that top pattern could be gotten off from the under one! I mean to try it, little by little.
I have found out another funny thing, but I shanıt tell it this time! It does not do to trust people too much.
There are only two more days to get this paper off, and I believe John is beginning to notice. I donıt like the look in his eyes.
And I heard him ask Jennie a lot of professional questions about me. She had a very good report to give.
She said I slept a good deal in the daytime.
John knows I donıt sleep very well at night, for all Iım so quiet!
He asked me all sorts of questions, too, and pretended to be very loving and kind.
As if I couldnıt see through him!
Still, I donıt wonder he acts so, sleeping under this paper for three months.
It only interests me, but I feel sure John and Jennie are secretly affected by it.
Hurrah! This is the last day, but it is enough. John is to stay in town over night, and wonıt be out until this evening.
Jennie wanted to sleep with me the sly thing! but I told her I should undoubtedly rest better for a night all alone.
That was clever, for really I wasnıt alone a bit! As soon as it was moonlight and that poor thing began to crawl and shake the pattern, I got up and ran to help her.
I pulled and she shook, I shook and she pulled, and before morning we had peeled off yards of that paper.
A strip about as high as my head and half around the room.
And then when the sun came and that awful pattern began to laugh at me, I declared I would finish it to-day!
We go away to-morrow, and they are moving all my furniture down again to leave things as they were before.
Jennie looked at the wall in amazement, but I told her merrily that I did it out of pure spite at the vicious thing.
She laughed and said she wouldnıt mind doing it herself, but I must not get tired.
How she betrayed herself that time!
But I am here, and no person touches this paper but me, not alive !
She tried to get me out of the room it was too patent! But I said it was so quiet and empty and clean now that I believed I would lie down again and sleep all I could; and not to wake me even for dinner I would call when I woke.
So now she is gone, and the servants are gone, and the things are gone, and there is nothing left but that great bedstead nailed down, with the canvas mattress we found on it.
We shall sleep downstairs to-night, and take the boat home to-morrow.
I quite enjoy the room, now it is bare again.
How those children did tear about here!
This bedstead is fairly gnawed!
But I must get to work.
I have locked the door and thrown the key down into the front path.
I donıt want to go out, and I donıt want to have anybody come in, till John comes.
I want to astonish him.
Iıve got a rope up here that even Jennie did not find. If that woman does get out, and tries to get away, I can tie her!
But I forgot I could not reach far without anything to stand on!
This bed will not move!
I tried to lift and push it until I was lame, and then I got so angry I bit off a little piece at one corner but it hurt my teeth.
Then I peeled off all the paper I could reach standing on the floor. It sticks horribly and the pattern just enjoys it! All those strangled heads and bulbous eyes and waddling fungus growths just shriek with derision!
I am getting angry enough to do something desperate. To jump out of the window would be admirable exercise, but the bars are too strong even to try.
Besides I wouldnıt do it. Of course not. I know well enough that a step like that is improper and might be misconstrued.
I donıt like to look out of the windows even there are so many of those creeping women, and they creep so fast.
I wonder if they all come out of that wall-paper as I did?
But I am securely fastened now by my well-hidden rope you donıt get me out in the road there !
I suppose I shall have to get back behind the pattern when it comes night, and that is hard!
It is so pleasant to be out in this great room and creep around as I please!
I donıt want to go outside. I wonıt, even if Jennie asks me to.
For outside you have to creep on the ground, and everything is green instead of yellow.
But here I can creep smoothly on the floor, and my shoulder just fits in that long smooch around the wall, so I cannot lose my way.
Why thereıs John at the door!
It is no use, young man, you canıt open it!
How he does call and pound!
Now heıs crying for an axe.
It would be a shame to break down that beautiful door!
³John dear!² said I in the gentlest voice, ³the key is down by the front steps, under a plantain leaf!²
That silenced him for a few moments.
Then he said very quietly indeed, ³Open the door, my darling!²
³I canıt,² said I. ³The key is down by the front door under a plantain leaf!²
And then I said it again, several times, very gently and slowly, and said it so often that he had to go and see, and he got it of course, and came in. He stopped short by the door.
³What is the matter?² he cried. ³For Godıs sake, what are you doing!²
I kept on creeping just the same, but I looked at him over my shoulder.
³Iıve got out at last,² said I, ³in spite of you and Jane. And Iıve pulled off most of the paper, so you canıt put me back!²
Now why should that man have fainted? But he did, and right across my path by the wall, so that I had to creep over him every time!
------
BookReviews
Deafness in America the original words
A review by Raymond Luczak
A Mighty Change: An Anthology of Deaf American Writing 1816-1864
Christopher Krentz, Editor. Washington, DC: Gallaudet University Press, 2000. Paperback, 238 pages, $24.95
For those interested in examining the gradual shift of attitude toward Deaf people, A Mighty Change makes an intriguing historical overview. In his introduction, Christopher Krentz, an English and ASL instructor at the University of Virginia, provides a good background, enabling us to ascertain the period and context in which these pieces by deaf writers were composed. It is all the more remarkable to encounter how some of these deaf writers explain their own version of heaven: A place where their hearing would be restored, thereby redeeming them. Today, for much of the deaf community, this concept is pure anathema; they would rather that the world sign, not speak.
To understand how such a complete transformation of attitude was possible in the space of less than a century, unraveling thousands of years of deeply ingrained attitudes towards the ³deaf and dumb,² we need to examine the historical context of change. Before the nineteenth century, there were no government-sponsored agencies or institutions created to serve the needs of deaf people, so religious charities often took up the slack. Although many of them were well-intentioned, they did not necessarily see their deaf brethren as equal to those who could speak. It had been maintained for many centuries prior that speech was considered a sign of intelligence and civilization; the deaf were therefore considered hopeless causes and useful only for the menial.
But things began to change in Connecticut the spring of 1814. Struck by the inherent intelligence of a deaf eight-year-old girl named Alice Cogswell, the young minister Thomas Hopkins Gallaudet was asked by her father to find a way to educate her. She did not know sign or speech, so Gallaudet used paper and pen to communicate, which was visual; over time, Alice learned ³other words and simple sentences.² Encouraged by Gallaudetıs success, Mr. Cogswell was eager to set up a school for deaf children and appointed Gallaudet to go to Europe and learn the methods of teaching deaf children.
It was in London that Gallaudet first met Abbé Sicard, director of the National Institute for the Deaf in Paris, and two of his former students, Jean Massieu and Laurent Clerc. It was a revelation to Gallaudet that sign language, not speech or paper and pen, was used. Gallaudet was also impressed by how Massieu and Clerc responded to questions from the hearing audience by writing in French on the blackboard. The very idea of literacy beyond simple sentences was unforgettable, and Gallaudet knew what he had to do.
Eventually, in the year 1816, Clerc and Gallaudet arrived in America. On that voyage, Gallaudet taught Clerc how to write in English, and Clerc taught Gallaudet how to sign. (Excerpts from his journal in which he practiced his English on that trip are included in the book.) The deaf community in America can literally trace the beginning of their own liberation to that year. Clercıs importance as the first deaf teacher in America cannot be overemphasized: He was the first to attempt to standardize the home signs made by his deaf students with the French Sign Language he knew. With American Sign Language thus crystallized, it was not long before deaf people, sharing a common language that they understood with their own eyes, began to feel a nascent political self-awareness of themselves as a people, not some disenfranchised group of ³helpless unfortunates.² The book even points out that Clerc himself had changed: When he first arrived in America, he was asked whether one deaf person should marry another. He said no, but within a few years, he actually married one of his deaf students!
Some of Clercıs speeches written to raise funds for the establishment of the American Asylum of the Deaf are also reprinted here. It is fascinating to see that Clerc described deaf people as ³unfortunate beings² who needed help. He also considered sign language to be universal, now known to be entirely untrue. In the first half of A Mighty Change, called ³Individual Authors,² excerpts by other deaf writers from the same period are equally interesting: James Nack composed poems like ³The Minstrel Boy,² in which he laments his hearing loss and beseeches his readers to empathize with these deaf people who do not know the gospel; John Burnet, late-deafened at the age of eight, would write the first manual for hearing parents of deaf children: He advocates the learning and use of sign to communicate. (He did not learn signs until he was 21 years old.) The entirety of his short story ³The Orphan Mute² is revealing if only for its perfect melodramatic structure that the girl, once abandoned, eventually learns sign and gets her hearing man!
John Carlin wrote a poem, ³The Muteıs Lament,² in which he confesses his ambivalence about being deaf and wanting to be hearing. He expects that when he arrives in heaven, his hearing would be finally restored. Edmund Booth, with his letters, tries to convince other deaf people to move West, which at the time was still a frontier. Adele M. Jewel, a deaf beggar, wrote a pamphlet called ³A Brief Narrative of the Life of Mrs. Adele M. Jewel (Being Deaf and Dumb),² and sold it to support herself and her mother. It is a rare look into the life of a lower-class deaf woman who lived in Michigan before the Civil War. In her writing, we glimpse the fact that black deaf children were being educated. Laura Redden Searing, who lost her hearing at age eleven, eventually became a reporter. She offers some insights with ³A Few Words about the Deaf and Dumb.²
The second half of the book is called ³Events and Issues.² One of the best passages in the entire book is the reunion report at the American Asylum of the Deaf on September 26, 1850. This was the first full expression of deaf pride. The contributions of Gallaudet and Clerc, who established the school 33 years earlier, were honored. It is indeed moving to read the speeches made by former students to Gallaudet and Clerc themselves; the spark had been lit for others to fan into flames in the generations ahead.
The book next presents a batch of published letters written back and forth between various deaf people on the idea of establishing a deaf state, not just a deaf community in the middle of a hearing city, a country of their own. The opinions expressed in these letters provide an extraordinary barometer of the times, only some forty years after Clercıs arrival in America. Some wanted secession; others wished for the inclusion of sign-fluent hearing people. But the fact that deaf people had already begun to see themselves as a people with their own newspapers and strong opinions at that time is clear.
The book ends with Clercıs arrival in Washington, DC, for the inauguration of what later became Gallaudet University, and the two speeches that were made on that spectacular day in 1864.
In many ways, this book would be best appreciated by people who are intimately familiar with Deaf culture and the wide varieties of deafness within the community. We need to know our own history, because it is only in looking back that we can gauge the progress weıve made and determine how much further we have to go. A Mighty Change is a solid addition to our understanding of a complex and changing community.
Raymond Luczak (www.raymondluczak.com.) is the editor of Eyes Of Desire: A Deaf Gay & Lesbian Reader (1993, Alyson) and the author of St. Michaelıs Fall: Poems (1996, Deaf Life Press). He lives in New York City where he is finishing up his debut feature GHOSTED.
Disability culture in American theater
A review by Katinka Neuhof
³Access, Activism and Art," in American Theatre Magazine, April 2001 issue, published by Theatre Communications Group, New York, $4.95
When I first saw the April edition of American Theatre Magazine focusing on disability in theater, I felt a surge of pride. Finally! I thought. Weıre being recognized, embraced as a group, a community, not as ³special² individuals who produce legitimate work ³despite² our disabilities.
At the center of the cover crowded with images of people with disabilities stands a man holding a white cane. This is not an anonymous image of ³the blind² but the handsome face of African American playwright/actor/poet Lynn Manning. Thereıs something downright breathtaking about seeing the phrase The Cultures of Disability written in bold letters. Thereıs no room here for the old argument about whether disability culture actually exists. Now a mainstream magazine devotes a series of articles to how disability culture is finding a strong sense of identity through playwrights, performers and other theater professionals with disabilities.
In the first article, Sharon Jensen, executive director the Non-Traditional Casting Project says, ³Talent . . . has only ever been confined by public attitudes toward disability and by the limited perceptions of those who are non-disabled and conventionally biased. . . . Itıs time we all listened to the brilliantly clear messages we are getting. Itıs time we opened up our thinking and our practices to include more artists with disabilities in the professional theater.²
Yes! I thought. Our time has come. Weıre here, weıre artists, look at us!
Collectively these ³disability culture² articles do inspire pride by creating a powerful statement on the impact that artists with disabilities have on American theater. Yet these articles also send out another definitive message: Such shifts in attitude are hard won and not everyone is immediately accepting.
In the article, ³O Pioneers,² Victoria Ann Lewis tracks the professional training of two young actors Ann Stocking, whose disability affects her spine and her gait, and Diane Jordan, who has cerebral palsy. When applying to graduate schools, both women faced attitudinal barriers from faculty members who, I suspect, never imagined that a person with a disability would want to receive professional training as an actor. ³It was scary,² says Mel Shapiro, head of the MFA program at the UCLA School of Theatre, Film and Television. ³Youıre looking for people who are going to go through a very physical rigorously difficult course. I had never dealt with a person with a disability.²
The primary concern of this faculty member was initially, at least, not the talent of a potential student but the fact that he had never interacted with a person with a disability. Later, Stocking talks about the pressure of living with her role as a pioneer in her acting program. She explains, ³I felt so much pressure to do well, not just for myself, but for all other disabled people . . .² Not only must she deal with the ordinary day-to-day pressures of being a graduate student, but because of her unique status as a student with a disability, she feels she bears the added burden of being a groundbreaker.
A roundtable discussion brings together seven professionals with disabilities, five playwrights and two directors, who discuss the complex, funny, frustrating experience of being politically active coupled with the desire to create art in a larger nondisabled society, a society that often views our work in an environment of preciousness and fascination.
Playwright/actress Susan Nussbaum says, ³Thereıs always the desire of the able- bodied to understand the experience of disability in its simplest way and to sentimentalize it, to cheapen it.² Playwright/performer Cheryl Marie Wade finds her own way to confront the overly careful gaze of the able bodied. She says, ³. . . my primary audience is crippled. I want to write something about that lonely, isolated cripple that I was. . . . So Iıve always thought that who I write for first and foremost is other disabled people. And if able- bodied people come along for the ride, I think thatıs fabulous.²
Carrie Sandahl, a director and scholar who teaches theater at Florida State University, introduces the most compelling section: excerpts of seven plays written by the artists previously discussed. ³The excerpts express a vibrant disability culture movement that is in the process of its self-definition,² she writes. ³This body of work reflects very much the bodies that created it.² As I glimpsed the world of each play, I felt a strong sense of recognition, seeing an authenticity in the details that didnıt require analysis or justification. Thereıs something deeply satisfying in letting the work speak for itself. I craved longer excerpts; I wanted to get more than just a passing sense of each play.
But the sense of excitement I felt reading all about our culture in American Theatre magazine was tempered by my own impatience. Ten years after passing the Americans with Disabilities Act, weıre still talking about physical access to theaters? I also ask myself why belated recognition in a mainstream magazine somehow adds to my own sense of validation of my own culture.
I guess I have to admit that my own attitudes are slow to change. While this issue of American Theatre shows how far weıve come as an artistic community, we still have a long way to go. Susan Nussbaum speaks to where we are right now when she says, ³I canıt even begin to figure out how the general public thinks about this stuff. And all any of us can do, really, is whatever weıre good at, and hope that at some point, weıll be able to chip away at this monolith. And a couple of generations from now, our voices will be out there.²
Katinka Neuhofıs play, "Blue Baby," appears in Staring Back: The Disability Experience from the Inside Out (Plume).
The weave of Kuusistoıs world
A review by Eli Clare
Only Bread, Only Light by Stephen Kuusisto. Copper Canyon Press, 2000. Paperback, 104 pages, $14.00.
Stephen Kuusistoıs Only Bread, Only Light is a quiet book of surprising and spare poems. Kuusisto approaches many themes: blindness, light, language, landscape, music, braiding them together in unexpected ways.
The book is framed by two groups of poems about blindness. So often in fiction and poetry blindness is used as a metaphor for ignorance, innocence, buffoonery or passivity. In a welcome contrast Kuusisto turns this dynamic around, using the world as a metaphor to open up the experience of being blind, of learning to read Braille, of losing sight as an adult, of living as a blind child. This poetic strategy centers disability in a powerful way and gives us some striking images. In ³Learning Braille at Thirty-Nine,² Kuusisto writes:
I hunch over it,
The boy in the asylum
Whose fingers leapt for words.
And I study late
As quick, musical laughter
Rises from the street
And I rub the grains of the moon
In my hands. (pp. 8-9)
Or the ³Tenth Muse²:
Blindness is a long, inlet wave.
Even at noon the swimmers vanish
As when Odysseus saw ghosts,
Distinguished them from weeds
Or stones . . . and they were gone. (p. 57)
These images, Braille compared to grains of the moon; the experience of blindness compared to Odysseusıs experience of seeing ghosts (a metaphor which of course puts Kuusisto in dialogue with another blind poet, Homer) take blindness as their given and let everything else follow along. We really shouldnıt expect less from Kuusisto, author also of the much-acclaimed memoir Planet of the Blind. But, in truth, poems like these that place disability front and center and weave skillful stanzas from that center are few and far between.
At the same time Only Bread, Only Light isnıt really a book about blindness; rather blindness is one of several significant themes. Kuusisto explores language throughout the book, starting with the opening poem that examines Swedish words for blind. Later, in a less-serious love poem, he writes:
Of course
I spoke the heartıs language
Like a foreigner,
Contending
With the metallic taste
Of unfamiliar vowels,
And of course
My mistakes
Were tragicomic.
For love I said wheel of fire
For gratitude, dense blue air (p. 90)
With this exploration of languages, both serious and playful, and how different words sound on the tongue also comes an exploration of different cultures and countries. These poems range from Chicago to Helsinki, from Sherlock Holmesıs fictional home in London to a summer solstice celebration in Finland.
Kuusisto threads his poems with images of landscape. More than once he describes birch trees of the north woods, whether they be here in the United States or in Scandinavia: ³But now/Birches/Fill/With a kingdom/Of birds.² (p. 32) And later: ³The monarch butterflies/Climb the silver birch/Just beyond my door.² (p. 96) Often the natural world becomes intertwined with the human world as Kuusisto works with extended metaphors:
Birch tree, is it true
Our every breath is a wish
Whether we will it or not
Each cuneiform spasm
A message?
Silver birch with your three trunks
Iım coming out
To walk the trees. (p. 101)
Kuusistoıs use of overlapping images is one of the devices that tie these wide-ranging poems into a single book. Just as birch trees appear repeatedly, so does light: ³Terce,² the second poem in a series of seven about the loss of reading vision, begins with this stanza:
This morning I asked for the opening
Of my bodyıs gates, that sunlight
Would touch the bones of my face.
We wait for our lives
And the unequivocal judgments of light. (p. 96)
These lines immediately remind the reader of lines in the title poem earlier in the book: ³At times the blind see light,/And that moment is the Sistine ceiling,//Grace among buildings no one asks.² (p. 22) Kuusisto keeps looping around, braiding light to blindness to language to landscape back to light.
In the end, maybe Only Bread, Only Light is really about blindness and how being blind is part of the whole weave of Kuusistoıs world, just as light and birch trees and the quirks of language are. In this way he achieves something important for disability culture in these spare poems that often donıt squander a single word with their short line lengths and tight stanzas. He give us a book that places disability at the center, the real lived experience of disability, not disability as metaphor and stereotype. And at the same time he gives us a whole world where disability is just one integrated piece. For this and these lovely poems, I am grateful. Kuusisto is a poet to relish.
Eli Clare is poet, essayist, activist and the author of Exile and Pride: Disability, Queerness and Liberation (South End Press).
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Lost Creek Campground, Wheelchair Accessible Trails
I.
Beavers have built this smooth water.
Grasses edge the pond. Wide blades
arc, enter the water reflection,
a circle. Lingering beyond the grasses,
alder and cascara. Thin trunks, exuberant
leaves.
Water-striders dash their shadows across
the silty bottom. Dragonfly, a finger
of blue light, comes to rest on the mud
shore. Wings repeat the sun, the silence.
Ravenıs cry rattles the throat of sky
overhead. Dismantled to stillness, I am
no other place.
II
Itıs the spaces
between
the immense trunks
of mountain hemlock
that Iıve missed.
The forest-weaving
of light, shadow, green.
The scent of needles.
What I loved
and lost,
returned.
Melanie Green
This poem originally appeared in Manzanita Quarterly.
---
WHAT??
Jerry to cripples: stay in your house!ı
³Pity? [If] you donıt want to be pitied because youıre a cripple in a wheelchair, stay in your house!² Jerry Lewis on the May 20 CBS News Sunday Morning, responding to Correspondent Martha Teichnerıs question about those who have protested Lewisıs pity tactics. ³Iım telling people about a child in trouble!² he sputtered. ³If itıs pity, weıll get some money. Iım just giving you facts!²
Without a role, you're as good as dead
³If he could not be a husband, a father, a provider, whatıs the point? Why even exist?² Rose Wendland, who is fighting to remove husband Robertıs feeding tube; her remark came in a KCRA TV interview May 30.
Sensory problems
³Look, nobodyıs deaf, dumb, and blind over there.² EPA administrator and former New Jersey Governor Christine Todd Whitman, responding to criticisms of the Bush administrationıs loosening of environmental safeguards. The remark was reported in a story on Earth Day which ran on ABC News.
Priest, nun or disabled: no sex
³Only about 2 percent of the population has not engaged in sex by age 30, and that number includes those under constraint not to, such as priests, nuns and disabled people.² Edward O. Laumann, one of the authors of ³Sex in America: A Definitive Study,² quoted in the April 11 Chattanooga Times. Laumann did not say who was putting the disabled people ³under constraint not to² have sex or if he did, reporter Aimee Courtice didnıt let her readers in on it. Laumann is a professor of sociology at the University of Chicago.
The Living Dead, continued
³Walter really stopped living on Jan. 17, 1990. A hideous auto accident near Tampa. In an instant this robust, larger-than-life character was rendered into a quadriplegic dependent on a respirator and the constant care of his wife, Lillian.² Albany (NY) Times Union columnist Fred LeBrun, writing what he considered a tribute to winemaker Walter S. Taylor, who actually did die in late April. ³The gods could not have designed a crueler end for someone who embraced life in such a physical, sensuous way,² LeBrun continued. ³He was a poet, an artist, fond of the ladies and always the leading player in the brassy melodrama that was his life.²
Old enough to die
³I am not against it, as long as it can be carefully enough regulated so that it only concerns very old people who have had enough of living.² Netherlands Health Minister Els Borst, telling reporters that a ³suicide pill² wouldnıt be a bad idea. The pill should only be permitted, though, Borst said, if the person administered it themselves and ³there was a test to ensure they really were tired of life and desperate to die.²
No disabled moms or dads wanted
³It pays to have two committed, able-bodied parents popping out of bed in the morning.² Child psychiatrist Elizabeth Berger, telling Newsweek reporters Karen Springen and Pat Wingert how important two ³committed, able-bodied² parents were to a childıs psychological development. Bergerıs comment appeared in Newsweek's May 28 cover package on ³Why the Traditional Family Is Fading Fast What It Means For Our Kids.² The story was headlined, ³Is It Healthy For the Kids?²
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Getting an Edge
10 things I learned from filing an EEOC complaint
by James E. Patterson
A lot of things have happened since my daughter and I were profiled in the May/June 1995 issue of The Disability Rag (³A Father, A Daughter and Uncle Sam²). I was a civil service employee at the U.S. Department of Agriculture when in 1992 I was denied a promotion to its foreign service because my daughter had had corrective heart surgery at birth.
I filed a discrimination complaint with the U.S. Equal Employment Opportunity Commission, based on my association with my disabled daughter. In 1995, the USDA changed its ³irreversible² decision, and I was promptly dispatched to Mexico as Agricultural Attaché. The Agriculture Department then closed the books on my complaint.
Theyıd forgotten one thing: damages. So it was that I had to file another complaint with the U.S. Equal Employment Opportunity Commission to make them pay up for the problems they caused me. I received my check in February 2001!
Today my 10-year-old daughter is fine and looking forward to a happy, healthy and full life. But the last nine years have been a long and stressful experience.
Friends have asked what I learned from it. I have given that question considerable thought. Here are 10 things I learned that can help others going through similar experiences:
1. Keep the faith. Look for sources of motivation and inspiration during the lengthy process. I found solace in the Bible, which I consider the most inspirational book ever written. Those of other faiths can find similar inspiration in their holy books.
2. When you file a complaint against management, word travels quickly. This is unfortunate, since you might want to change jobs within the organization to distance yourself from hostile and unsympathetic managers. In my case, I was told that it would be impossible for me to change jobs due to my EEO status.
3. Donıt take frustration out on your family. At first, I was guilty of this. Fortunately, I recognized this weakness and changed courses so that I was directing my frustration through the EEO process.
4. Hire an attorney on a contingency-fee basis; they are out there, you just have to look for them. I hired an excellent attorney with a background in civil rights from the Department of Justice. The advice about the EEOC process and the laws, the Rehabilitation Act of 1973 and the Americans with Disability Act, were invaluable.
5. Document, document, document! Keep a written journal of all the instances of harassment and unfair treatment that occur due to your participation in the EEOC process. Keep your attorney informed with weekly or monthly letters and other documentation. While I was engaged in the EEOC process, I was moved from my office into a storage room; the illegal move took place on a day I was on sick leave.
6. Donıt let your work suffer while you are engaged in the EEOC process. This is one of the quickest ways to get fired. Keep trying to put in a productive eight-hour workday regardless of the harassment. In my case, management simply ignored me and assigned me no work, giving me plenty of time to spend on my EEOC complaint.
7. Discrimination can be emotionally disturbing; it was very disturbing for me. I sought professional help in dealing with my frustration, panic and anxiety problems.
8. If you have a strong case of discrimination, contact your agency or department head. My case was strong because USDA put in writing that I was being denied promotion due to disability of a dependent. I sought assistance from the Department of Justice, Department of State, the American Civil Liberties Union and several U.S. Senators. All of them informed USDA that I could not be denied an employment opportunity due to the disability of a family member. USDA just didnıt want to hear what these agencies and Senators were saying.
9. Tell your story to the news media. I was lucky to get the New York Times interested in my case and I got good coverage including a story in January, 1995. The Wall Street Journal had made my case front page news in November 1994. This coverage helped USDA to realize they were getting bad press relations due to my case.
10. Donıt give up! Donıt become so frustrated that you simply give up. Donıt be so humiliated by management slights and mistreatment that you allow them to get by with denying you your personal, legal, professional and civil rights. If you believe in your case, then stay with it. See it through to the end no matter how long it takes.
James Patterson lives in Washington, DC. He can be reached at 113232,3546@compuserve.com