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
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
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
"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
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
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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