This is a story about a disabled man whose father won for him a court challenge for assisted suicide in 1990, the year that the Americans With Disabilities Act became law. It looks at many of the questions disability-rights activists say never get asked. It originally ran in the September 1990 Disability Rag, predecessor to Ragged Edge magazine, and is reprinted along with other stories about assisted suicide in the Ragged Edge anthology, available from The Advocado Press for $18.95.
by Mary Johnson
May 23, 1990: A report in the Las Vegas Sun by Jeff German said 31-year-old Kenneth Bergstedt was petitioning the Las Vegas courts for permission to "end his painful existence." Bergstedt, the article said, "was "a 31 year old quadriplegic hooked to a respirator for more than 20 years" for whom "life no longer worth living."
Bergstedt's attempt to get a court to condone his effort at assisted suicide was depressingly familiar. Those of us in the disability rights movement had been watching cases like this come before the court with numbing regularity now. A few months ago it had been David Rivlin in Detroit. Now it was Kenneth Bergstedt in the home of Jerry Lewis's Telethon of Stars.
Bergstedt was "mentally alert and can speak," German wrote. He "wants to be given a sedative, have his life-support system turned off, and be allowed to die in peace." According to a court affidavit, German reported, Bergstedt "has no happy or encouraging expectations to look for from life, receives no enjoyment from life, lives with constant fears and apprehensions and is tired of suffering."
The next day's story quoted Las Vegas psychiatrist Jack A. Jurasky, who German wrote had been "a psychiatrist for 34 years." Jurasky told German things like "he's not a vegetable" and "he's alert and intelligent."
The issue had to do with "quality of life," as Jurasky put it.
"The quality of life for this man is very poor, moderated only by momentary distraction, but forever profaned by a future which offers no relief," German says Jurasky told the court in an affidavit. When I later wrote the story up for The Disability Rag, I quoted this, and added the italics around "forever profaned by a future which offers no relief."
Jurasky's affidavit went on. He had found Ken Bergstedt competent. "Intelligence is estimated as superior. Awareness and insight into his situation appears realistic and judgment is estimated as good and uninfluenced by impulse or emotion."
Even in these cases, which were becoming regrettably familiar, such prejudice -- believing that suicidal judgment on the part of a quadriplegic is not influenced by emotion but is, rather, completely rational -- continued to seem startling.
Disability psychologist Carol Gill believed this kind of prejudice, specifically on the part of the counseling profession, was fueling these cases which seemed lately to be springing up with more and more frequency.
She wrote, "In the vast majority of cases, when a severely disabled person persists in wanting to die, there is an identifiable problem in the support system. All too often, they are surrounded by people who accept their desire to die as understandable. All too rarely is that desire adequately examined." She deplored what she calls an "absolute absence" of examination in these cases by professsionals with adequate background in disability. "They don't even use rehabilitation psychologists!" she told me. It seemed, she said, the courts had no understanding that there could even be such a thing as prejudice at work. "And there are far too few of us working in the clinical field," she says, referring to psychologists and psychiatrists who are themselves from the disability culture.
By June 9, Las Vegas District Judge Donald Mosley would rule, much as a Georgia court ruled last year in the case of Larry McAfee (see July/August Ragout), that Kenneth Bergstedt had the right to be given a sedative and taken off his respirator. He concluded that Bergstedt's death in this manner would not be considered suicide; Bergstedt would merely be regulating his own medical care. Therefore, anyone who helped him die would not be breaking any law. And like Georgia Judge Edward H. Johnson had done, Mosley too ordered the case appealed to the state Supreme Court so that it would set a precedent. Bergstedt's attorney, Jack Cherry, wanted very much to get a precedent set; he had taken the case much for that reason. Bergstedt's father had contacted several attorneys before he found Cherry, who wanted to take the case. [in book I will explain why and who Cherry is; this gets into right to die politics.]
Cherry had told German that Bergstedt's ventilator "only prolongs an agonizing existence."
The pattern was emerging again: The man who wanted to end his life; the family who wanted to help him -- in this case his father -- the attorney who seemed all too eager to help, the psychiatrist who seemed to have no questions as to the psychological appropriateness of a disabled person's desire to die (when, I suspected, they would have many questions about that appropriateness were the person not disabled like Bergstedt). I also noted the zealousness of Las Vegas Sun reporter Jeff German. By the time German wrote his June 9 story on Mosley's decision, he had already provided Sun readers with three other stories. In one, he told readers that Jurasky was "a respected Las Vegas psychiatrist." In another, he told readers -- and this apparently before he'd ever seen Bergstedt ("I haven't had the privilege of meeting the Bergstedts," he wrote in that same column)-- that "throughout his day, Bergstedt lies on a gurney, breaking the monotony by reading, watching televison and writing poetry on a computer by blowing into a special device."
His articles did not examine how Bergstedt had gotten the computer, nor why; why Bergstedt spent his day watching television; or, in fact, what life for a person with Bergstedt's disability could potentially be, were he not living in isolation with an elderly father cut off from any contact with a disability community. German had not asked questions about Bergstedt having any disability community.
Instead, he wrote that "love was working overtime at the Bergstedt home;" that "Kenneth's wish to die, and Robert's willingness to help him fulfill that wish, probably are the greatest gifts of love either man could give each other."
"They sound at peace with each other," he wrote.
To me, they sounded isolated, cut off from any contact with a disability community and involved in an unhealthy depression that was feeding on itself -- and I felt I was at least as qualified as German in making that assessment. German had talked to an attorney and a psychiatrist; I had, over the years, talked to hundreds of disabled people -- and read their writings, heard their thinking, sat in meetings with them as they discussed emotions, fear and at times, suicide. I'd heard them talk about the effects of oppression, isolation and negative self image. I had heard them talk about the saving grace of a disability community.
Nowhere in any of German's four stories had any questions been raised as to why institutionalization would be inevitable with the elder Berstedt's demise; nor any question about the fact that Kenneth Bergstedt had never appeared in court but had in all instances been spoken for by his father.
Neither Bergstedt nor his father would talk to anyone but their attorney, I learned. Bergstedt hadn't even appeared at his own court hearing. His 65-year- old "adopted" father (German's words) had appeared in his stead, toting a 5- page affidavit that the court accepted as being the son's words -- a statement that said he "had no encouraging expectations to look forward to from life, receives no enjoyment from life, lives with constant fears and apprehensions and is tired of suffering."
Hearing this, Judge Mosley had given the go-ahead on Bergstedt's suicide without ever meeting with the man.
I couldn't help wondering how many of those words had been inspired by his isolated existence with a father who was quick to tell everyone he talked to that he had lost a leg in an industrial accident himself, has high blood pressure "and other physical ailments."
What did Bergstedt really want, I wondered? How much of this was orchestrated by his father? I tried to find out.
I called attorney Jack Cherry. "He won't talk to you," Cherry snapped at me. They'll only talk to Jeff German, he said. Cherry repeated that Bergstedt was living an "agonizing existence" and "was not stable."
I called German. He'd just gotten an "exclusive" interview," he said.
No, he said peevishly, in answer to my question, he had not asked if Kenneth had considered any options other than a nursing home. No; he hadn't discussed whether Kenneth had been involved with disabled people. He was covering the legal issues of the case, he pointed out. He sounded to me like a man in a hurry.
German's exclusive interview ran July 29, three days after President Bush had signed the Americans with Disabilities Act.
In German's computer terminal, Bergstedt's existence had now transmogrified to "hellish." The interview with Bergstedt and his "ailing father" turned up no new facts other than German's observation that Kenneth's body "periodically went into convulsions and he had trouble breathing and talking because phlegm was building up in his throat as the result of being hooked to a breathing device."
I found that odd. In subsequent inteviews with over a dozen people who used respirators (none of them used the term "hooked to,") as well as with rehabiliation physicians, none described life on a respirator as being as horrific as this.
I had asked one man specifically about phlegm build-up. "Sure," he had said, nonchalantly. "It happens sometimes." You clear your throat some and that takes care of it; if you have a cold you might need to have your attendant suction you out every now and then, but it's no big deal."
But the man I talked to had an attendant who he'd hired himself -- and trained. Bergstedt had only his "ailing father."
Nowhere in this inteview was there any discussion of the serious need for Bergstedt to have someone other than his father help him. That he could obtain no competent assistance was evidently accepted fact. The solution, in the view of everyone surrounding Bergstedt, seemed to be suicide.
I called Paul Longmore. Longmore, that year visiting assistant professor of history at Stanford University, used a respirator. In recent years, he'd been increasingly vocal in opposing the court-sanctioned assisted -suicide cases that had been cropping up with what he called "alarming frequency." When Larry McAfee had made news with his suicide plea less than a year ago, Longmore had gone head-to-head with McAfee's attorney on Nightline.
"People don't choose suicide rationally," said Longmore heatedly. "They choose it when they have aboslutely no hope.
"Why do ventilator-using quads feel they have no hope?" he went on. "I would contend it is not fundamentally because of their disability; it's because of their social situation. If we have learned anything in our society we should have learned by now there is nothing inevitable about the social isolation and the deprivation of self determination of even the most severely disabled people."
Even with Kenneth Bergstedt evidently present at German's exclusive interview, it was the elder Bergstedt, it seemed, who told the reporter Kenneth's wishes: "I'm 65 years old, and he [Ken] doesn't know whether I'm going to fall asleep and have a heart attack or stroke and not wake up,' Robert Bergstedt said. 'He's afraid that he'll be all by himself on the machine and drown. It'll take him four to six hours to die. It will be a painful process.'" Still, no explanation from German as to why it was Bergstedt's father, rather than Bergstedt, saying this -- nor any discussion as to what Bergstedt might need, other than suicide.
"'It's very tiring,' " Robert Bergstedt continued to tell German (who seemed to report it without question). " ' We have been so dependent on so many different people for years. Let's face it. He's been in jail for 21 years and I've been his keeper."
How true that was, I thought -- though I did not mean the way I thought Bergstedt or German meant it.
Accompanying the interview was a German column: it seemed so unfair, he wrote, that the state Supreme Court was dawdling with its decision! He urged the judges to "show a human side" and hurry up with the decision that Kenneth could kill himself and no one be blamed. The Bergstedts "told me they can no longer wait for the Supreme Court to act," he wrote.
When I talked to Robert Bergstedt a week later they were still waiting.
Robert Bergstedt answered the phone when I called the Bergstedt residence. His was a quiet voice, but, as it turned out, a voice determined that I would not speak to Ken. Not angry, but protective. I had sort of suspected I would find as much.
"That would be very difficult, really, " Robert Bergstedt replied when I asked if I could speak to his son. His voice was low, but insistent. It was a sentence meant to brook no interference. Nonetheless, I persisted. Why would it be difficult to talk with him, I wanted to know. He was in the other room, "on a respirator," the father explained, as though that should explain everything.
I knew plenty of people on respirators who didn't let it stop them from talking on the phone. So I pressed the issue, suspecting that at any minute Robert Bergstedt might hang up the phone. They would talk to no reporters, after all, I'd been told, except German. But the elder Bergstedt didn't hang up on me -- he simply reiterated that Ken wouldn't come to the phone. "I do most of the talking," said his father. "I've done most of that. He insists that's the way he wants it."
I suspected that was true. But I couldn't help thinking of the hundreds of disabled people I'd known over the years who, almost always in anger, told about parents, spouses, children speaking for them, telling them to be quiet, that they'd handle it for them. More than few of these disabled people had said that for a long time they'd felt they shouldn't speak but let someone else do it for them. That they were embarrassed.
I asked if Ken used an iron lung; thinking the term might be the one the man used; thinking perhaps the phone didn't reach into the room. "Oh, no, he's on a portable respirator," Bergstedt was quick to correct me.
"Those who haven't met Kenneth might find it difficult to imagine why he want to give up on life," German had intoned in his July 29 commentary. "Those who have met him have no trouble understanding."
Longmore snorted when I read him that sentence. "Yeah. Those who have met him -- who don't know anything about disabled people -- have no trouble understanding him, " he sneered. "Carol got the same thing from the guy that did David Rivlin in. He and Gill were on a radio show. He said, 'Dr. Gill has never met David Rivlin. I have.' He met him a couple of times -- and then he killed him. They think that makes them experts?"
The same thing had happened with Larry McAfee. "McAfee's lawyer said that Mark Johnson and I and 'other people like us' " -- meaning, he said, disabled people -- "don't know Larry McAfee since we've never met," Longmore went on. "The lawyer had never met a disabled person in his life -- he was an aviation lawyer, for God's sake! -- who, after a few conversations with Larry McAfee, understood him better than we disabled people did! "Longmore sounded bitter.
"So what happens to him over the next couple of months?" Longmore asks rhetorically, still speaking of McAfee. "He gets the right to die.
"Then some people that know about disability get to him; they start talking to him about some of the possibilities -- and the next thing you know Larry McAfee changes his mind." It was true. Larry McAfee was not only alive, but now he was working with Johnson and the other crips at getting Georgia's Medicaid policy changed. Larry had been to the state Capitol not too long before, talking about disabiity rights before some hearing or other.
As Longmore talked about McAfee, I found myself recalling a phrase dropped innocuously into German's exclusive. Even though the lower court had ruled, Bergstedt wasn't in any hurry to end his life, German reported. Might it be, I wondered, that Bergstedt would like to have an option to allow him to continue living? German certainly wasn't exploring it.
I wanted to talk to some other people who'd used respirators to see if life on a respirator was the hell the court documents always made it out to be. Of course I'd talked to sex educator and Los Angeles disability activist Barbara Faye Waxman a number of times in the past -- and she'd never indicated life had been hell for her; nor had Ed Roberts, head of the World Institute on Disability. They were both "on respirators."
"The whole thing is outrageous," said Roberts now. He'd just learned about the Bergstedt case himself. "I am getting angrier and angrier about these cases. They feed on each other. The attorneys, the courts, the judges, they don't know anything. They see somebody like Bergstedt, they say, 'of course he wants to die!'
"What's happening is we're killing disabled people in this country and then act like we're doing them a favor. It's outrageous!" I thought back to German's columns and thought that Roberts had expressed my thoughts better than I had.
"I've been on a respirator for 26 years," the MacArthur "genius" fellowship award winner continued, "and I watch these people's cases -- they're just as dependent on a respirator as I am; the major difference is they know they're going to be forced to live in a nursing home -- or they're already there -- and I'm leading a quality life.
"That's the only difference. It's not the respirator. It's money."
Not once did "money" appear in any of German's writings on the case.
"We're supposed to be able to get a nurse for 40 hours a week," Robert Bergstedt told me. The nurse, he said, was to be paid for by Medicare. "But we can't ever seem to get anybody for 40 hours."
Despite what Roberts said, and what I wanted to believe, I knew I shouldn't compare people. I knew that in the final analysis everyone's decision is his own. I knew I could not -- should not -- judge from remarks made by one gimp about his life that another gimp's life would be equally valid to him.
Linda Knipp agreed with that. Also a respirator user, Knipp chaired the Personal Assistance Committee of the California Association of the Physically Handicapped. She headed Los Angeles County's In Home Supportive Services' advisory committee as well. To her, it was an issue of privacy. "I'm probably a renegade in the disability community because I do believe it's a matter of individual choice; that if somebody chooses to turn off their respirator they should be allowed to do that." But Linda Knipp thought they should be given adequate psychological and social care before such a decision was made, and she knew that wasn't happening. Longmore was right, she said: if gimps had ways to live on their own, if they weren't "needlessly incarcerated," as she put it, it would be less likely that disabled people would choose suicide. "But the reality is that those resources are not available right now," Linda Knipp said.
Even California, one of the best states in the nation" for providing disabled people with money for hiring attendant services, provided only enough to pay an attendant minimum wage for little more than 8 hours a day, Knipp said. "It's painful, it's wrong that people have to make such choices," she went on, referring to people like herself who are dependent on respirators. "It's wrong that social and medical services are set up so that the state will pay up to $2,000 a day for someone in a hospital but, if you try to live at home" you're eligible for only a fraction of that amount.
"That's the basic problem. TThe state pays for care in an institution -- if you can find one. It doesn't pay for adequate care on the outside."
What made her angry, she said, was the lack of exposure of the financial issues in news accounts of people like Bergstedt.
"Most people don't have any idea of the financial constraints placed on people who use ventilators," she said. "They're so amazed that we're even alive that they don't ever bother to look at how we manage to stay alive financially.
Even though every disabled person I talked to believed one could live a productive life even if one were using a respirator, perhaps their disabilities weren't the same as Ken's. So I talked to Dr. Stephen Wills, M.D. at the National Rehabilitation Hospital in Washington D.C., who knew specifically about medical conditions of people who've had injuries to the cervical vertebrae, C-1 and C-2 -- like Ken Bergstedt. I asked him a lot of questions. I asked him about the blood pressure specifically -- because Ken's father had said his son couldn't sit up because of blood pressure problems. What about that, I asked Wills. Could people like that sit up? Yes, he said; they would need to be worked with to learn how to do it, but they could.
I asked about a host of other medical problems that I'd been told could occur; Wills answered each question. In the final analysis, he said, there was no medical reason someone with the conditions I'd described couldn't live on their own, go about in the community -- provided it was accessible -- or even hold a job. So I knew it probable that people who wanted to end their lives weren't having problems so much with their actual disabilities -- though I knew they often represented their problems that way, because that was how they appeared even to them -- but with other things. Lack of resources. No money --- not to purchase the kind of therapy Dr. Wills was talking about, not to hire decent attendant services. Depression was bound to result.
I knew from German's articles that the elder Bergstedt had been talking about dying a lot -- to the attorney, to the court, to German. If Ken lived alone with his dad -- as the papers, over and over, stressed -- if he was kept isolated with an elderly man focused on his own death, wouldn't it stand to reason a son would also begin thinking of death? If a son were told his only option was a nursing home; if a son had been cared for for 5 years only by a father who described himself as "ailing," wouldn't it stand to reason that a son's thoughts would be, bent, as it were, toward ending it? Toward seeing no options?
How different might it be if Ken knew of options, or wanted them! To my knowledge, Ken had had no contact with other disabled people, nor wanted any. I decided to call back again -- knowing I might be hung up on.
Once again I asked to speak to Ken. Robert Bergstedt knew who I was -- I was the woman who put out a newsletter for handicapped people. Maybe he didn't consider me a reporter; anyhow, he continued to talk to me.
But he did not let Ken on the line. He was resting, I was told. When I pressed it, Bergstedt got exasperated. "He doesn't like the way he sounds, OK?"
I wondered if Ken could sound any worse than the others I'd talked to who used respirators, whose talking was puffed and labored, punctuated with pauses and the slow steady hiss of breathing apparatus in the background. What difference should that make? Between those I'd talked to, leaders in the disability rights movement, and Ken, though, there stretched an entire world.
Did Ken ever go out? I asked.
"Well, he can't," Bergstedt said slowly. "There ain't nuthin' he ... he .. just can't do anything when he goes out," Bergstedt offered by way of explanation. "See, we used to travel all over, and," Here Bergstedt paused, as if remembering. He seemed by voice and phrasing to be a man resigned to sadness: "Ken wasn't always this weak. He's gone downhill in the last two, three years. Very much so."
Was it all physical? Or was it partially emotional? When I asked, though, all I got was another recitation of Ken's physical condition.
"We used to go out," Bergstedt said. And Ken had friends, he said. But it seemed an iffy thing. "They come over and he's not feeling good and they feel guilty and then they don't show up anymore."
Bergstedt forgave them their behavior, though. "He's in pain quite a bit of the time, see?" When I asked what the pain was caused by, I was told, "Oh, everything."
I wondered if any disabled people had called him since news of his interest in dying had surfaced. Had he been in contact with any disabled people, or groups, I asked? "No." The elder Bergstedt was emphatic. "He doesn't want to be."
I tried to learn about what kinds of options they'd considered. But Robert was taciturn with me. They'd had a "nurse," he said; from what I was able to learn was a home health agency. But they'd never been able to get her for the 40 hours they were suppoed to; he said; he never did really explain why.
The picture being painted as I talked to the elder Bergstedt was, unfortunately, as depressing as I'd imagined it.
Vernon Cox, an advocate specialist at the Marin (Calif.) County independent living center, had told me, "One of the problems you ought to look at is, are there any underlying causes for him feeling like he can't deal with life."
"In that Bouvia case [Elizabeth Bouvia, who in the early 1980s petitioned a California court for assistance in committing suicide], they said, 'Oh, that poor lady, she's upset because she's handicapped.'
"The lady'd already lost her husband, lost her job, had her kids taken away from her -- of course she's upset! but all they could say was, 'Of course she wants to die; she's handicapped!'"
Cox told me that Bergstedt's alleged fear being on a respirator without someone present to attend to him constantly "well may be a psychological feeling -- or it may be a rational, real feeling -- but it may not have validity."
"You've got to find out what he knows versus what he's been told," Cox insisted.
Cox wasn't a therapist, he stressed, though he did have some background in psychology. He had, he said, counseled many disabled people who had had feelings of wanting to die. "I always approach these situations with the idea that there are some valid rationales that only the person with the disability can know, but that there are also some what I call 'suppositions' -- they think something is going to happen. They think, 'Oh, I can't be left alone because I will x [die, suffocate, fall off my gurney].' Well, it's not necessarily true that these things would happen. But they think they will happen.
"What I try to do is find out what they base their assumption on. Like, they'll say, 'I'll strangle if I'm left alone 10 minutes!' I'll ask, 'Well, why do you say that?'
"I don't say it's not true; I just want them tell me why it is true.
"And then, as we talk about it -- 'I'm afraid of this, I'm afraid of that' -- I might ask, 'Well, have you ever tried it?'
"In other words, give them a goal toward some more rational way of believing. The way to lead a person is to get them talking about 'it' -- whatever 'it' is. Having to defend it, fight you about it, you talk about it.
"And as you talk about it you may find that the wind may blow the fog away and you may see that it's a straw bull, not really a very big bull at all."
I think Cox would be somebody I'd want to counsel me.
Has he seen any patterns in the counseling he's done? Yes, he says. "When in insolation, any person feels desperation." It's almost a poem. But then, I've noticed, Cox talks in a kind of poetic way.
I was supposed to use Cox's approach if I ever got Ken on the line. But I never got Ken on the line.
"As soon as I can get the right stuff [meaning, German had written, the Seconal sedative they were seeking]. I want to do it right away." That's what German had reported Ken as saying.
Robert Bergstedt had told me, "I think he's going to continue to put pressure on the Supreme Court for us." Bergstedt hadn't directly asked German to do this, he told me, but that he thought German "just thinks it's the thing to do."
"He wants my son to have his wishes -- to do what he wants to do -- he should have the right to do what he wants to do.
"He's very human, you know what I mean?" Berstedt said admiringly, referring to German. "A very nice man."
I knew that even before this story was printed the chances would be that Ken would have ended his life.
I was curious that no one other than me, it seemed, had contacted Bergstedt. Oh, there'd been other media attempting it, for sure. "Yeah. We've refused them all," Robert Bergstedt told me. "Peter Jennings, Good Morning America, and all that. We won't talk to any of them -- they want to come in, take a bunch of pictures, and yak, and we're not really interested in that."
But there hadn't, if Bergstedt was telling me right, any calls from disabled people. Maybe, I thought, precisely because it hadn't been on TV.
Or maybe because disabled people were reluctant to get involved.
I'd talked before starting on this story with several people in California who gave me names of others they thought were "working on the case." But the leads proved false. I was unable to find a single disabled person or disability group who'd written any letters, made any phone calls, or sought through the Nevada attorney general's office to file any legal briefs in the case.
I called the Nevada Association for the Handicapped in Las Vegas who were listed as having an "independent living" program. In another article in The Sun, this one by reporter Mary Manning, Madge Lange, vice president of the National Association fo Pro-Life Nurses, had told Manning that Bergstedt "was referred to the Nevada Association of the Handicapped" but that "apparently his mind was made up."
So I talked to Association director Vince Trigg. "We're really not involved in the case at all," he told me, right off. There had been no recent referral that he knew of, he said; he thought, if memory served, that several years back the Bergstedts had contacted the group's independent living program about some equipment-- "he needed some assistance getting some equipment; he's on life support, you know," Trigg added. But Trigg emphasized that "I really don't have any details" about the Bergstedts' current situation.
"We have a peer support group that meets here regularly," Trigg went on. "We've kind of talked about it. With the disabled people we work with, the consensus we're getting is that he should have that right [to end his life]. There really hasn't been a strong indication from any of the people we've talked with that he's doing anything other than requesting the right to die with dignity."
Trigg paused. "Now, the deeper questions, like, 'does he have some emotional problems that need to be addressed, would he be able to be more functioning if he were able to have some counseling, be more interested in pursuing life' -- I don't know.
"Those are questions that I don't know if you ever get the answers to."
Longmore, when I contacted him, wanted to know what "the disabled community in Nevada" was doing to help Bergstedt.I reported Trigg's coments.
Longmore's response was unequivocal. "I'm really getting fed up with this bullshit stuff from the disability community," he told me, "about this, this, spurious 'autonomy' we're supposed to be able to exercise. It's as dumb as what the libertarians are saying -- those Hemlock Society people!"
I told him they seemed to see the issue as "freedom of choice."
"God, what kind of freedom of choice does an oppressed person have?" he shot back at me.
"When will we get it through our heads that people don't make these choices because of their disabilities but because of their oppression?"
I suggested that perhaps the people I'd talked to hadn't figured that out yet.
"I don't think a lot of people in the disabled community have figured it out yet," he added.
"And what that indicates to me," he continued, "is a gross naivete and denial on the part of a lot of disabled people -- really a lot of the people in the movement -- of the reality of the depths of oppression of disabled people."
Trigg did not bring up the attendant services issue, so I did. There was an attendant program in Nevada, he said; but they didn't administer it; United Cerebral Palsy of Southern Nevada did. He gave me their number.
"That is one of the principal aims of the program, I know that," he volunteered, after a moment. "It's to keep people from being institutionalized."
When I contacted UCP, I learned that while UCP had indeed been administering the program for the last two years, the Nevada Association for the Handicapped had managed it prior to UCP. Strange, I thought.
It was clear, though, that if Kenneth Bergstedt would pursue this avenue he'd run only into a dead end: The program, passed by the legislature a few years back, and funded by the state to the tune of a measly $500,000, can serve about 45 people. The program provides up to a maximum of 28 hours of services a week.
I have continued to wonder what Ken Bergstedt's life was like. I find myself, in the absence of any way to ascertain the reality, inventing fantasies of his life. I know this is dangerous; yet for me it is also, perhaps, instructive.
I invent a room with a man lying on a "gurney;" that's what German's reports have told me. I imagine a man whose sole conversations are with a father who always tells reporters that he himself has had a leg amputated; who offers the tidbit that his wife died of cancer; who most recently has told German that he thinks he has cancer but hasn't gotten it diagnosed because he fears hospitalization himself; and then who would care for his son?
I think of this as I recall Dr. Wills's comments that people with C-1 and C-2 quadriplegia, who must use respirators, can indeed go out and about in the comunity; absolutely; that there is no medical reason they can't even hold down a job if the workplace is modified; that yes, they might need an attendant every 30 minutes or so; but nonetheless they can live a life. I think of Vernon Cox's instructions: "You've got to find out what he knows versus what he's been told. "
And: "Give them a goal toward some more rational way of believing."
I think of Ed Robert's anger: "The only difference between them and me is money."
I remember Attorney Jack Cherry telling me that his client "is not very stable, medically." I think of Robert Bergstedt pointing out, as way of explaining why his son can not go out, that if he sits up in his wheelchair "his blood pressure goes down to 60 over 30." I remember asking Dr. Wills about this very thing, and being told that people learn to live with such low blood pressure; in rehab; they work with them to adjust to that, he says; they can get wheelchairs that tilt; that people with such conditions can -- I hear it over and over -- live full lives.
And yes, I know that every case is different, and that I'm no doctor and shouldn't judge Bergstedt's physical condition. But I didn't think I needed to judge it to see there was a lot of evidence piling up that Ken Bergstedt was, very indirectly and kindly, being led to a belief that there was no way out.
I think of all these medical things, and I think of Robert Bergstedt's seeming fixation on them -- and the attorney's, and the journalist's. And I figure that Ken's trapped in a medical nightmare of the people around him, with no way out.
Still, I know that McAfee got help -- he's living in a small group home of five people now, Mark Johnson's told me. Not the best situation, admittedly, but it seems there's been some forward motion -- it seems if the Kens of the world would start lashing out at what their problems with attendant services are, as ADAPT wants to start doing, if he goes on Good Morning America and says "I want to die because I can't get decent attendant services" -- as I hear Mark Johnson say McAfee might almost be ready to do -- then maybe, just maybe, things would start to move forward -- and Ken Bergstedt would still be alive.
In my mind, I see Ken Bergstedt trapped inside his dark room, inside the dark room of other people's minds; other people who see his death as some sort of a release.
A release, I wonder, for whom?
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