Electric EDGE
Web Edition of The Ragged Edge
January/February 1997
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Right to Life,
Fight to Die:
The Elizabeth Bouvia saga

Taken from 1984 stories in The Disability Rag.
© Copyright 1984 by The Advocado Press. All rights reserved.
Do not reproduce this story unless you include this information!

This is the compliation of a series of stories about the case of Elizabeth Bouvia in 1983, which experts often point to as an early effort to get court approval for assisted suicide. It is about a woman who sought to have a hospital help her commit suicide. She lost, and later changed her mind about suicide. (Her right-to-die attorney, Richard Scott, nondisabled, did commit suicide a number of years later) This story also introduces many of the people you've met in this issue of Electric Edge, talking about the right to life trying to appropriate this issue from disability rights.

By Mary Johnson

"I'm trapped in a useless body."

Twenty-six-year-old Elizabeth Bouvia had been in California's Riverside General a month when she called reporters and announced she was looking for an attorney who would help her force the hospital to keep her comfortable while she starved herself to death.

"If I really could, I would go out there and kill myself. But I can't. I physically can't," she said.

She saw death, she said, as "letting go of all burdens. It is being able to be free of my physical disabilities and mental struggle to live." Her only other alternatives, she said, were "life in a convalescent home" or "a continuing struggle outside.

"It's not that I don't have the will to live," she continued. "But it's too much of a struggle to live within the system or to depend on someone in the system. In reality, my disability is going to keep me from doing the living I want to do."

Bouvia knew that without court intervention, the hospital-- any hospital-- would feed her by tube if necessary to prevent her death. Now she recounted her frustration in trying to find an attorney that would help her get her way. "I made a couple of inquiries but so far no one will even talk to me," she complained. "The public defender says I need a private attorney, and the county legal services wouldn't even touch the case."

Elizabeth Castner Bouvia's life had been rocky for a long time.

Her parents had separated when she was five. Ren Castner had retired to Bandon, Oregon. Liz, he said, was "really on her own."

When Joan Castner remarried, Bouvia was 10; she put her in the Angel View Crippled Children's Foundation home in Desert Hot Springs. The two saw each other twice between then and her 18th birthday. Still, said Ren, they mother and daughter had communicated "beautifully." When she was released from Angel View at 18, Bouvia visited her father and began making her own life.

"She said, 'I want to do it on my own, I wouldn't want to be a burden on you,'" Ren Castner recalled.

Bouvia enrolled at Riverside City College, then transferred to San Diego State University where, using a state-financed home attendant and a secretary to help with dictation, she earned a bachelor's degree and started on a master's. She married Richard Bouvia, just out of jail on a robbery charge, but after only a month, at the end of a tense week-long visit with his parents in Iowa, she returned to her father, saying her husband could not cope with her paralysis or their debts.

Richard Scott, trained as a physician, had instead become an attorney and lived in Beverly Hills. A founder of the Hemlock Society, Scott had become involved with the Southern California Chapter of the American Civil Liberties Union. It was his hope that the ACLU would be able to push the right to die as a civil liberties issue.

Soon after Bouvia's account appeared in the papers, Scott visited her. Here was a person for whom his assistance seemed tailor-made. The whole thrust of the case, as he would shape it for the media, was not whether Elizabeth Bouvia was making the "right" or "wrong" decision. All he wanted was to secure through the court the right to make it her decision. "I am not an advocate of suicide," he said. "Elizabeth Bouvia is a tragically developmentally disabled person. She has come to realize she is completely unemployable."

Soon after his visit, Bouvia had agreed that Scott should be her attorney. Later she held a news conference from her hospital bed. "Do I want to die?" she asked rhetorically, speaking clearly and distinctly in measured tones,. "I feel that's a very hard question to answer. I feel the quality of my life is over." Her marriage, she said, was over -- and had been "for many months."

The ACLU said in a prepared statement that it was concerned with Bouvia's "constitutional rights of privacy and self determination in health care and her right to be free from unreasonable government intrusion."

When Elizabeth Bouvia burst upon the national scene in 1983, disability activists in Los Angeles learned about her along with the rest of the country, through the media. Bouvia did not want to talk to them.

Yet her story, as reported, didn't jibe with the reality disability rights activists in Los Angeles knew. Newspapers and television commentators said Bouvia was 'afflicted" with cerebral palsy, or they called her a "victim of cerebral palsy." Sometimes she was referred to as "almost fully paralyzed." But it was hard to tell for sure the real extent of her disability -- or why she needed help.

Paul Longmore believed there was more to Bouvia's case than got reported. Longmore worked in the Program in Disability and Society at the University of Southern California -- one of the first disabilities studies programs in the country. To Longmore, there was something fishy about the whole thing. Why did Bouvia need to get a hospital's help killing herself when a bottle of pills at home would work just fine? She'd already told reporters she'd pull out any feeding tube staff forced on her; if that were the case, she certainly had the physical ability to dose herself with pills and die without involving an entire hospital's legal corps. Why did she keep telling reporters, "I can't. I physically can't"?

It seemed to the activists that her attorney didn't know his client either. He'd told reporters matter-of-factly that "quadriplegics can't work." To Longmore, who knew plenty of quads who worked, the statement was just nutty. Was it Scott's conclusion, or Bouvia's?

The arguments being used to press for Bouvia's right to suicide sounded to Paul Longmore like arguments he'd heard months earlier, sanctioning the death of a baby with Down syndrome who was known to the nation as "Baby Doe." People had been afraid that such babies would grow up to have horrid, miserable existences; now here was Elizabeth Bouvia, providing the nation with a real- life cautionary tale about being born disabled: Bouvia was the horror which the Baby Doe case had prefigured.

A fate worse than death
Bouvia was saying exactly what the pundits had said when Baby Doe had been in the news earlier that year: that life as a disabled person was a fate worse than death.

Harlan Hahn knew the public connected the two; they made little distinction between a Baby Doe and an Elizabeth Bouvia. To Hahn, head of the disability studies program at USC that Paul worked in, it boiled down to one thing: Most people had looked at Bouvia and thought, my God! if I were in her position I'd want to die too. Some of that thinking was conscious, some was unconscious -- but that was its heart. It was that which had motivated the ACLU of Southern California to take on the case in the first place.

Hahn thought the ACLU affiliate had acted precipitously. But he knew the national ACLU policy on euthanasia supported the "right to die" for both those who were "terminally ill" and "the totally and permanently disabled"; that they had erroneous connected the two. They were simply reflecting what society understood of disability. People did think of severe disability as a terminal illness, even though people even more disabled, like Ed Roberts, who ran California's state rehabilitation system, were living long and full lives. People didn't understand that most of that construct of "disability " was really a product of the disabling environment. People never considered that the problems Bouvia faced might stem from an unadapted environment; that if her environment would change, her problems might lessen.

The program Hahn and Longmore were developing at USC, one of first 'disability studies" programs in the country, had yet to gain recognition from their political science and policy studies colleagues. In 1982 Hahn had published "Disability and Rehabilitation Policy: Is paternalistic neglect really benign?" in the Public Administration Review. It was the first time such ideas had appeared in an academic journal. Hahn's analyses used what he called a "socio-political" approach. The medical concept of disability as a physical impairment or limitation wasn't accurate, he insisted. Nor was the economic understanding of "disability" as a vocational restriction or incapacity. What we called "disability" was really "a product of the interaction between the individual and the environment," he'd written. It was that framework he and Longmore now applied to their thinking about Bouvia.

Fearing Right to Life
Paul Longmore was convinced the public didn't differentiate between an infant born with some catastrophic condition and an Elizabeth Bouvia. It didn't see issue as one of civil rights. In the public's mind, both were medical issues. Paul Longmore considered himself about the farthest thing from a right-to- lifer; he would never agree that "heroic" measures should be taken in every case to preserve an infant's life.

But he couldn't help what he saw and heard: to him, it seemed beyond question that a lot of infants had died because of prejudice. Politics certainly did make strange bedfellows. Disability rights activists had found themselves on the same side as National Right to Life when the Reagan administration had reversed its usual procedure of stalling on disability rights and published rules earlier in the year saying that civil rights provisions in the Rehabilitation Act passed in 1973 meant that severely disabled newborns had to be cared for and fed. The ruling had come in the wake of reports of a baby who'd been starved to death because he had Down syndrome and would grow up retarded. Now, with the Elizabeth Bouvia case, crips who believed they came from a long liberal tradition found themselves once again on the politically incorrect side of an issue. On the Baby Doe issue they'd found liberals siding with parents who wanted to withhold food from "deformed infants" so they'd die. On the Elizabeth Bouvia issue, they found themselves opposing the ACLU's championing of Bouvia's death wish.

Harlan Hahn also had been worried when the Baby Doe case had hit the news. "We are very, very leery of being placed in the same political landscape as Right to Life," he'd said. Many disability activists felt the perils of being on the same side as Right to Lifers; yet they could not quit identifying with the baby. Many of them had been that baby.

Longmore wanted more facts about Bouvia. He thought exposing the facts would be a way to shift the public understanding of this from the right-to-die cast it had taken on to the real disability rights issue it he knew it to be. So he began to dig. His information came from people who knew people who knew Bouvia, from people who knew the social workers who'd worked with someone who'd worked with Bouvia. He talked to people who had worked with Bouvia on getting state assistance. He talked to her estranged husband. Bouvia herself, though, refused to talk to him.

What support did she have?
California had a program called In Home Support Services. The program paid the cost for in-home assistance if you were severely disabled. It was one of the few such programs in the country at the time, and people like Longmore were proud of it: unlike most in-home "care," which consisted of a nurse assigned by a medical agency coming in and caring for you as if you were a patient (a term he and the others scoffed at), this program gave you, the disabled person, the money; you hired your own help. You didn't hire nurses; you didn't need nurses. You hired somebody to be your arms and legs. The program cost California some money, true; but it was cost effective: If it hadn't existed, people like Bouvia would have been put in nursing homes, at a far higher cost. Longmore himself used the IHSS program to pay someone who came in and helped him get dressed, get breakfast and get ready for work. Hahn used the program too. Most of their fellow activists used it.

From talking to those who knew of Bouvia's case, Longmore came to believe that Bouvia was eligible for the maximum monthly payment in the program -- at that time this was over $800. But, he was told, she was getting far less money. It seemed that she wanted as little assistance at home as possible, that she didn't want other people around, helping her.

Court testimony submitted by psychiatrists did not mesh with facts Longmore had learned. Bouvia had reached a point of despair, they said, when she "couldn't get a job," testifying in court that Bouvia had reached "the realistic conclusion" that she would never be able to work. "The realistic conclusion!" Paul Longmore spat out the words when he talked about it later. He'd been told that the Department of Social Work at San Diego State University had in fact told Bouvia that they "never would have accepted her into the program if they'd known how disabled she was." To Longmore, that was evidence not that "quadriplegics can't work," as Scott had put it, but of something completely different: it was evidence of discrimination. Bouvia was in effect being told she was worthless.

That kind of rejection, activists insisted, took its toll on one's psyche. And it had become clear to Longmore by now that Bouvia had had more than her share of rejection.

Bouvia's estranged husband told Longmore that Bouvia had wanted surgery to relieve spasticity in her arms, but that California's state medical assistance program had refused to pay for it, considering it experimental. Longmore figured that Bouvia didn't know about appealing the refusal. It was still unclear to him whether Bouvia didn't understand how to deal with the system, or whether the experts who had dealt with her knew so little about the programs people with disabilities like hers were entitled to that they simply made a shambles of the facts of her past.

In mid-November, the papers reported that Riverside Superior Court Judge John Hews had turned down Bouvia's husband's request for a psychiatric evaluation, and that Bouvia had initiated divorce proceedings. "The issue is not whether Elizabeth Bouvia has made the right choice" about dying, attorney Scott told the press. "As long as she's a competent adult, it's her choice to make."

Mary Jane Owen, a continent away in the Washington, D.C. offices of the President's Committee on Employment of the Handicapped, found herself increasingly frustrated with the coverage of Bouvia's sad tale. Connected to the informal network of activists nationwide, she soon learned the unreported information Longmore had heard: That Bouvia had had a miscarriage. That the woman was in a failing marriage. That she'd been rejected at least once for a job, had been told that she should never have been accepted into the career program anyway, since she was "so disabled." That she had moved back home, where her father had made it clear he didn't want her. "Were psychiatric students given the facts of the case of Elizabeth Bouvia, they'd quickly say she needed not suicide but help," Mary Jane pointed out. "Why," she wrote in The Disability Rag, "does this bizarre story suddenly become logical when we add the information that Bouvia is severely disabled?"

Longmore suspected it was Bouvia's encounters with the system, her continued frustration at getting the crumbs of society -- "paternalistic neglect" to use Harlan's term -- that had brought on her depression. She had turned that depression inward on herself, seeing her disability as the immutable source of her troubles. A woman who, by her mid-twenties, had been denied the things people like he, Harlan and other Los Angeles activists took for granted; a woman who perhaps did not know her rights, who was fixated on her "right to die" because she hated her disabled self.

To Mary Jane Owen, Elizabeth Bouvia was a woman who saw herself trapped by a personal "flaw" that prevented her from succeeding in ways society demanded of her and simultaneously denied her -- a flaw she could neither rid herself nor accept. Where did such frustration go? Mary Jane wrote, " When we are afraid to express rage against others, it is common to turn that rage against ourselves."

The Prism of Pity
Harlan Hahn did not think that a nondisabled person could look at a disabled person except through the prism of pity. The language of the legal briefs, and of the judge, was replete with it. They referred to the woman's "helplessness." Her situation was "pitiable." Her life "lacked dignity." Hahn didn't blame the judge. He simply thought there was a lot of ignorance and a lot of prejudice there, from the attorneys and the press. Harlan Hahn submitted an affidavit to the court, making some of these points. "It was ignored," Longmore said later.

Hahn found himself being interviewed both by radio and television reporters; Cable News Network had a reporter talk to him. But Hahn saw, sometimes even while he was talking to them, that they didn't begin to understand what he was trying to say. They listened politely, then went away.

Longmore, Hahn and their colleagues sat in court, watching Bouvia testify. Every time her husband's name was mentioned, they noticed, the young woman became visibly agitated. But no one other than they seemed to notice; no one questioned her about it. To Longmore and the others, such things were evidence that Bouvia's issues were not entirely about the right to die.

Wesley Sutton had held a 13-night vigil at Riverside, hoping fruitlessly to get a chance to talk to her, insisting to the press that Bouvia did not really want to die. Sutton had cerebral palsy himself. And he thought he knew what was going on with Bouvia. Long before this current episode, she'd had suicidal bouts. Twice she'd taken an overdose of pills, once she'd tried to slash her wrists. When it came right down to it, he said, she would not end up killing herself. He'd bet on that, he said.

Since Bouvia had found Richard Scott, she'd quit talking to reporters -- and almost everyone else. The hospital staff had been told to keep their distance, not to try to intervene, pending court action. Her lack of spontaneity and guardedness since she'd been surrounded by attorneys had made any kind of therapy impossible.

Determined that no one get to Bouvia directly, Scott had hired two private security guards for her. At each recess of the tightly packed courtroom, they quickly rose to flank her on either side, permitting no one near her. During one break, Bouvia puffed on a cigarette from her place in front of the counsel table. When asked by reporters, she repeatedly expressed concerns for her own safety. She feared other disabled people getting to her. She'd been harassed, she said, by people hoping to dissuade her. She criticized reporters for reporting the facts of her case inaccurately, emphatically denying that her decision to die had in any way been influenced by problems at school or estrangement from her husband. "I am fully aware of the resources available to me," she retorted at one point. "I chose not to use them."

Counseling would not help her, she insisted. She'd been disabled all her 26 years, she shot back to one reporter. "I am aware of what's out there; I'm not stupid."

Had she considered getting legal help when she'd been turned down for her job? an attorney asked on the stand. Her disability prevented her from doing any meaningful work, she shot back; without "'constant use of a machine or help from another person.

Everything has to be done for me. At times it's humiliating and disgusting. I choose to no longer do that."

No one but the activists seemed to notice that the woman who saw no reason to live came to court with makeup carefully applied.

Internalizing the prejudice
Bouvia was playing on the court's prejudices, they thought, because she had absorbed a lot of the prejudices herself and believed them. Her attorneys, and the expert witnesses they produced, looked at her personal crises of the past three years not as examples of oppression but as the inevitable lot of anyone with such a disability. Proof, as Harlan would put it, as to why any rational person with a disability like Bouvia's would naturally come to the logical conclusion that life was simply too hard to endure.

The hardest thing for the activists to deal with, though, was that Bouvia seemed to agree with that approach. Yet it wasn't surprising to them that Bouvia should believe her life wasn't worth living. Bouvia hadn't made that leap yet, had never had that "click" that women had when their consciousness had suddenly seen something about how they were treated, about how all women were treated -- a click! that meant they would never again see things in exactly the same light. Bouvia had never had such a click!, they suspected, and probably would never have one. She had surrounded herself by doctors and others who believed the same things she'd been taught to believe. She didn't want anyone breaking into that view and trying now to change her mind.

To her attorneys, Bouvia's roadblocks weren't a reason to fight for her right to a job or help at home, but clear evidence as to why the right to die was an important one for disabled people. It was "Whose Life Is It Anyway" in real life. It was all most people understood about severe disability. And it seemed to be the way Bouvia looked at it, too.

Mary Jane remembered once watching a goose trapped in the space between two farm buildings. A barking dog was terrifying it. There was enough space for it to have escaped, but it seemed totally occupied in avoiding the teeth of its very present threat. It could have turned and retreated, but it was "hypnotized by the confusion caused by the threat to its integrity," as Mary Jane put it. The poor goose kept coming to Mary Jane's mind as she watched Elizabeth Bouvia's saga. What could any of them do, other than to grieve with her that society had not prepared a good place for people like her to flourish? What could she -- or anyone -- do to help her overcome the weariness in her struggle to endure?

S. L. Rosen, who wrote for The Disability Rag, knew that Elizabeth Bouvia's demand to die held an allure for many disabled people. Bouvia, he felt, spoke with honesty about a life she hated. She frustrated the tiny disability rights movement in Los Angeles; frustrated disability activists in communities all around the country who didn't like the message she was sending the public. It was a message they wanted to eradicate. She was not behaving as a crip was supposed to behave in the 1980s.

When the activists collared reporters to tell their side of the issue, it sometimes sounded as though they believed Elizabeth Bouvia did not understand her own life. Now there was an "independent living movement," they said -- as if that should have solved everything. Nobody in the press knew what they were talking about.

Independent living
By the early 1980s, "independent living" had become a catch phrase in the disability rights movement. Many people whose disabilities required they have assistance every day -- with getting up, getting dressed, using the bathroom, eating -- wanted to live independently in their own homes, not in an institution or nursing home. Most people wanted to be in charge of their own lives. An "independent living" program was a kind of hybrid services-and- self-help program with its roots in the Sixties that tried to help crips fulfill that desire.

In the early Sixties, Ed Roberts, one of several quadriplegics attending school at UC Berkeley, got tired of living in the on-campus hospital. Roberts and the others had had polio and were in wheelchairs; Roberts used an iron lung. The campus administration had put them in Cowell Hospital on campus. There was no where else for them to live, and nobody on campus had ever even considered there might be another way, or even given it any thought. Hospital staff were to handle the students' personal care needs: get them up and dressed, help them use the bathroom, get them out in time for them go get to classes.

Living in a hospital was not Roberts' idea of campus life. He wanted to live in Berkeley. So did the other guys in Cowell. By pooling their money, they figured, they could hire their own help, which they could train -- you didn't have to be a nurse to help you piss, dress and eat -- they could get a place to live off campus, which they could get fixed up so they could get around in it in their wheelchairs. It was the Sixties and people tried new things in the Sixties. Ed Roberts and his friends were no different.

By cobbling together various resources and trying this and that, they managed to pull off their experiment. They were so successful at it that they were soon being asked to show other crips how they'd done it. The Physically Disabled Students' Program at Berkeley came out of all that; it showed other crips how to live in the community too. By the early 70s, Roberts and the others had set up an off-campus organization in Berkeley -- the Center for Independent Living. Roberts was one of the dozen or so people involved with the new venture. "We were always very clear," Ed would say later. "We wanted no part of creating an 'institution' of any kind. We simply wanted to be a part of and live in the community like everyone else. And we didn't want any part of what might become just a new type of nursing home. We planned to keep in charge of our own lives."

They also knew it would be cheaper to have folks just live in the community rather than setting up "special housing" -- which was the way it would evolve if medical or social work professionals got involved. The "cheaper" angle was always Roberts' battle cry. "Having someone come in to get you dressed, and help with the toilet and so on -- that's not anything 'medical.' It's just a service," Roberts said. By the time Elizabeth Bouvia made news, that in-home support service existed in nearly every county in California. It was the program that Longmore discovered Bouvia didn't like. She didn't like someone coming in and helping her.

Roberts would eventually become revered by activists in the growing disability rights movement across the country as "the father of independent living." He would be hired to run California's Rehabilitation Services Department, he'd set up independent living centers throughout California. The federal rehabilitation services administration would provide seed money to start "independent living" programs in communities all across America so that severely disabled people could learn ways to live on their own rather than in nursing homes. Roberts would win a MacArthur 'genius "award for his ideas. Yet his ideas -- and "independent living" itself -- would remain virtually unknown in the larger society.

As far as Cheryl Wade was concerned, Ed Roberts and "independent living" could have been on another planet, rather than just across the Bay. Cheryl Wade, in San Rafael, California, would in the 1990s become what the crip community called a "crip culture activist." But at the time Bouvia made news, she was one of those people who easily understood Bouvia's sense of helplessness. "I sat mired in self pity in front of a television set," she said, recalling earlier days. "Like my parents, friends, and neighbors, I'd grown up believing disability was a fate worse than death. The narrow images of disability that I'd come to accept as the only realities were those of the sweet, doomed poster child and the beggar on the corner."

Cheryl Wade had "no idea," she'd write, years later, that anything like that which Roberts was doing would even be possible. "Because I had only images of helplessness as references, I was unable to imagine that a severely disabled person could live on campus, hire attendants to assist with personal care, take control of his own life," she wrote.

The key to a good independent living center, as Ed Roberts envisioned it, was something called "peer counseling." Other crips who lived on their own in the community staffed these centers. Sometimes they were paid, sometimes volunteer. "There were no professionals at all" in Berkeley's Center for Independent Living in the beginning, as Ed Roberts put it. The crip staff told other crips how to work the system in order to find ways to live on their own, too. The centers generally kept a list of accessible apartments; sometimes they kept a list of people who would work as in-home help. They gave classes in how to hire and manage an in-home attendant; how to be the boss in the delicate employment situation in which you were paying someone to handle your body for you.

The better centers, the ones that took their mission seriously, also offered philosophy, activist rhetoric, and organized gimps to work for social change. They held rap sessions for gimps to talk about how to work together to change things. They got state laws passed, like the one in California that made the counties pay for in-home help for severely disabled people, and the California law that required buses to have wheelchair lifts. "It was important for us that when we went in and had a struggle with the system, that we won. We saw ourselves as coming out of the civil rights movement," Ed said. "You know, women were doing this stuff too. Consciousness raising. Support groups. Changing things. We saw ourselves along those lines."

"Although the 'independent living movement' was born when I was only 14, although it took root practically in my front yard," Cheryl Wade said later, "it was almost 10 years before I found out about it. It was not heralded on the 6 o'clock news, nor did it garner bold headlines. Norman Mailer did not rush out to capture its essence."

The "independent living movement" had not been lightly named. Independence was what most crips wanted. But independence for a person with disabilities as severe as Bouvia's, or Ed Roberts' or Cheryl Wade's, was always an elusive goal. The gains being made by the California activists -- city buses with wheelchair lifts, apartments with ramps and big bathrooms, and funds for in- home help, were, like the gains their comrades across the nation were making, slow and spotty.

Frequently they were too spotty to take any real advantage of. Someone might call an "independent living center" and learn that yes, there were some apartments around with flat entrances, with doors easy to open, bathrooms big enough to maneuver in in a wheelchair. But that there were no vacancies. A crip might plot to move out of a nursing home -- or his parents' protective sheltering -- into his own apartment, but then find out he wouldn't be able to get such an apartment anytime soon: there was a waiting list two years long.

Or a crip would figure that would do better if one had a job and could afford to buy a house and fix it up the way he needed. Such a crip would scheme to get a job. But could one expect, while living in a nursing home, to get a job? Would the nurses' aides get one ready every morning in time to get to a job? Could one get a ride to work? Though buses were supposed to have lifts, there might not be a bus stop near the nursing home. There was always the special bus for the handicapped, but there was a long waiting list to get put on it. If one did get a job and then lose it, because one couldn't get to work with any regularity, then ... And working was risky anyway -- unemployed, one got public medical benefits. The medical benefits were what paid for the room in the nursing home. If the crip lived at home, it was likely that his parents wanted no part of his moving out. Although things might be tense -- awful, actually -- with a grown child under the roof still, the parents were afraid. Convinced their crippled child could never live alone. Could never manage a life. Who would take care of him? Who would see after his things? Parents would think it too dangerous, much as they were tired and exhausted of having a disabled child, now in his thirties, still at home, still having to be cared for, helped to the bathroom, helped to dress ... That was certainly the way it had been for Arthur Campbell.

This kind of circular thinking filled many crips' heads. Disabled people had to rely on public programs, not their own abilities, to make them independent. Disabled people could be "independent," but the independence came from the state, not their own bodies. This difference was not mere rhetoric; it was reality.

By the time Bouvia made her first bid at suicide, some independent living centers in some states had managed to get the state to put money into small programs that let crips get in-home workers. California was at the time among the best states in the nation for paying for in-home help. Bouvia also had a van paid for by the state; an attendant paid for by the state. She had gone to school, paid for by public funds. But, as it did for so many crips, all this seemed to Bouvia like a house of cards. Many crips lived like this. They all wondered when the cards would topple; which card would topple first? "Images of helplessness were the ones I knew, and they immobilized me with dread," Cheryl Wade said, recalling a time that she had been not unlike Bouvia.

When Bouvia checked herself into Riverside General, she seemed convinced her house of cards was collapsing again.

Activist crips were irritated at Bouvia. She was publicly spouting all the wrong rhetoric. She was saying that it embarrassed her to have others take care of her intimate needs. That it was humiliating to have to be helped constantly by others to eat, to bathe, to go to the toilet. Some activists didn't want those kinds of things brought up. Activists in California were proud that they'd gotten their state to provide in-home support. That service was the cornerstone of "independent living" -- yet here Bouvia was, refusing the service, repudiating the entire idea of having someone help you with your bodily care. She was saying publicly that she'd rather die than depend on someone else to help her with her own body. This just at the time when little groups of activist crips here and there were talking among themselves of how important it was to teach society that to be dependent on someone else didn't have to such a bad thing. Now Elizabeth Bouvia was publicly repudiating all that.

The tiny disability rights movement, up until the time of the case of Elizabeth Bouvia, had been intent on showing that being disabled was not such a terrible thing, believing that once society realized that disabled people weren't all that different from "normal people," the barriers would fall. But it wasn't happening that way. Society still understood little about what it was really like to be disabled. The news of crips was of overcomers and those who had succeeded despite the handicap. That was the strategy Roosevelt had followed, and generations of gimps had followed it too. That was what gimps were supposed to do. A gimp who didn't do this, the conventional wisdom seemed to say -- who talked about society's role in their oppression rather than simply serving as a role model by being courageous and self-reliant -- wasn't worth reporting on.

"I was fortunate; my time finally did come. But it came with far more pain and struggle than it would have had my parents, friends and neighbors and I grown up with full-blooded images of disabled people," Cheryl Wade would say, some years later. There were still millions more, she knew, who had not been as fortunate as she had. Their time "might never come if they were not allowed to see the possibilities." Elizabeth Bouvia seemed to speak for those crips.

Bouvia has her day in court
"The court cannot order me to be a murderer. My concern for Elizabeth is that she made a bad decision at a very bad time, that she has us in a corner and we can't do anything -- especially anything to help." Riverside General's chief of psychiatry, Donald Fischer suspected Bouvia's wish to die would diminish with time. "As the chief of the department of psychiatry and a believer in the American judicial system, it is not easy to consider the possible necessity of refusing to comply with any judicial order," he told the court. "However, the extreme gravity of the situation, its potential for abuse, its basic contradictions to my medical training, beliefs and ethics make it mandatory for me to refuse compliance with any such order."

Barbara Miliken, a county attorney arguing the hospital's case, found herself in uncharted territory. She'd been unable to find any case law on anything like this; no one before had ever asked a hospital to let them stay in one of its beds while they starved. And, Fischer pointed out, there was no way Bouvia, even though she was disabled, could be considered "terminally ill." A person with cerebral palsy could be expected to live a normal life span, he pointed out.

What Bouvia and her attorneys were requesting, the county argued in court, would constitute "euthanasia -- or murder." They did not think Bouvia's constitutional right to privacy afforded her the right to starve herself to death on their premises while their hands were tied. "Never can there be a right in a civilized society to tell others, over their moral objections, to assist in a suicide," Miliken told reporters.

Ren Castner sat in the courtroom with the others, watching his daughter testify. It was hard for him, and sometimes he'd get up and go for a walk. There'd been a lot of inaccuracies in the evidence, he thought. Things she'd said about her home life -- or her attorneys had said -- that she had received no love; that's she'd been rejected by him and his wife -- that stuff was garbage. It just wasn't true. It wasn't he who had rejected her, but she who had rejected him. "Dad, I want to do it on my own," he recalled her telling him.

Now her mother had cancer herself, Ren Caster said. The doctors had given her only a few months to live. He'd lost another child in a boating accident. He didn't want to stand in Liz's way, but none of this made him at all happy.

Elizabeth Bouvia never did agree to talk with disability activists. Eventually she released a statement through her attorney. "I understand that recent accounts of my condition have created considerable anguish and concern within the community of people with disabilities," she said -- showing by her choice of words not to be an isolated victim of circumstance but a woman who was informed as to the currently fashionable nuances in language among disability activists. Unless the wording was her attorney's, which some suspected.

Though she conceded the activists' concerns were "genuine and well intentioned" -- "many of the people who have expressed doubt about my decision are concerned for my welfare out of human compassion," she said -- she went on to counter the activists' interpretation of the events of her life. She had "lived for 26 years with this condition," she said. She had lived on her own for the past eight years. "I am fully aware of the resources and options available to me as a disabled person."

The real issue, she reiterated, was "choice."

"As an individual, I believe that I have the right to make an individual choice with regard to my own future." She had done this, she said, "with full knowledge of all the other alternatives available to me." Although Longmore continued to doubt that this was the case, Bouvia stressed that she had "not made this choice due to my inability to secure regular employment or to function as a useful member of society to enjoy life." She had not made the choice "because of the failure of my marriage." One by one, Bouvia ticked off the reasons the disability movement had put forth as the underlying cause for her suicidal desires.

"I am aware that many disabled people volunteered to come to Riverside to talk to me about my decision and about other options. While I appreciate those offers, I do not wish to accept them. I wish to re-emphasize that I reviewed my alternatives, and that I now simply wish to be left alone. This is a personal and private decision, which I have made after long and careful thought.

"I appreciate the concern of disabled persons and the disabled community," she continued, "but would ask them to express their support for me by agreeing that my choice, as a competent individual, is mine to make, however much any other person disagrees with that choice. I am aware that the disabled community is uncomfortable with my choice because of their fear that my decision may have a negative impact on the future decisions of other disabled persons. My belief is that all people, whether or not disabled, should be free to determine their own future -- personally, privately and individually."

Bouvia's statement did little to quell the belief among activists that the woman was being manipulated by her right-to-die attorney. It sounded just a little too up on the right-to-die rhetoric in vogue just then, a little too pat.

After all was said and done, all the testimony heard, Judge Hews decided to turn down Bouvia's request -- a decision that the California Supreme Court refused to overturn, although not from lack of trying by Scott. A few months later, Bouvia moved out of Riverside General and headed for Mexico.

Paul Longmore resented the court's appropriation of "disability rights" to support Bouvia's suicide. It turned the concept of "disability rights" on its head. She had a right to choose death, but no right to choose the kind of life she needed? Longmore was furious. When society gave disabled the right to live with dignity, then, and only then, might we might talk about the right to die! Society had no business talking about a disabled person's right to die before it had given them a right to live! The argument that a disabled person had "a right to assistance" in killing themselves was, Paul knew, a distortion of the things the disability rights movement stood for. It was true: the movement did espouse the right to self-determination -- but Longmore felt it a very short leap from a court-sanctioned right to die to a duty to die. Behind that was society's belief that all disabled people had a duty to die. Court sanction of Bouvia's request would, he felt, ultimately endanger other disabled people.

And it was true, as the activists pointed out, that there were thousands of people with disabilities as severe as Elizabeth Bouvia's living happy lives. The activists themselves were as disabled as Bouvia. They did not want to die. They reasoned then, not illogically, that if Bouvia were depressed enough to want to die (and none of the crip activists denied that Bouvia really did feel depressed enough to want to die) the reason was not really her body -- it was what she thought of life in that body. This all made sense, up to a point. What did not make sense, perhaps, was their belief that a meeting with activist gimps could change Bouvia's mind.

It didn't surprise Paul Longmore too much when Itzhak Perlman was asked to comment on the issue. He'd been asked simply because he was having a press conference. About something else.

Longmore didn't regard Perlman as a disability spokesperson. But the media always wanted some public figure, someone it already regarded as a celebrity, to use as a source. It was a coincidence that Perlman was addressing reporters at the time; otherwise, the issue would never have been pursued.

The press didn't turn to the disability community for comment about anything. The press didn't know there was a disability community. Disability activists who submitted opinion page articles were told to try resubmitting them as letters to the editor. When an activist did get an op-ed page piece printed, it was rarely picked up by other papers. Evan Kemp's piece on the telethon had been an exception, a tiny pinpoint of light in a dark sky.

Though Longmore himself had an opinion piece about Bouvia published in the Los Angeles Times, his points never made it into the national debate. When disability rights advocates voiced opinions, their voices seemed to be quickly choked off by voices expressing the conventional wisdom about disability. Evan's piece on telethons had made a tiny splash, but then the issue had as quickly again slipped below the surface; no ripples remained. No lasting impression remained. So, despite the occasional forays of activists like Longmore and Kemp onto the op-ed pages, it seemed there remained no understanding in the media that there might be something like a "disability perspective" on an issue.

Longmore saw the problem as being partly the disability community's problem. There had not yet been any development of group consciousness. "Most disabled people don't want to be associated with other disabled people" is how he put it. This, of course, was part of Bouvia's problem, too. Hers was an extreme example, but the problem was real and it affected most crips to one degree or another. If disabled people did not see themselves as a community, it was little wonder, Longmore thought, that the press didn't either.

The "disability community" that Paul Longmore, Harlan Hahn and Mary Jane Owen talked about was so far mostly a fiction. What was lacking, it seemed to Longmore, was any kind of grassroots organizing and consciousness raising. It wasn't that the disability community had no leaders, he reflected, though that was the way it was always seen. No, the problem was that there were leaders but no constituency.

Maybe he should say it to the others: "Let's turn our attention inward. Let's get ourselves together." Disability activists, he saw, like himself and his friends in Los Angeles, had to convince themselves first that their best interests lay in what Paul called "collective consciousness and action." Paul Longmore knew the movement would never be able to make a dent in public consciousness until this happened. The Bouvia case had been an all-too-clear example of that.

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