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January/February 1997
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Drab Curtains:
The story that wasn't written
about David Rivlin

Taken from stories in the September, 1989 issue of The Disability Rag.
© Copyright 1989 by The Advocado Press. All rights reserved.
Do not reproduce this story unless you include this information!

In a 1989 case that right-to-die advocates see as a successful precedent, David Rivlin died in a Michigan nursing home. But there was another aspect to the David Rivlin story that never made it into the news. Disability Rag reporter Mary Johnson talked with Detroit Free Press reporter Mike Williams shortly after Rivlin's death and got some facts that might have saved Rivlin's life -- had he known about them.

By Mary Johnson

Some things were written about David Rivlin, but they weren't enough. Rivlin said he wanted to "control" the end of his life. He kept most of the world at bay during his final weeks after a Michigan court refused to say the quad should be "kept on his respirator" against his wishes.

Both Detroit Free Press reporters and People magazine talked to Rivlin in his final days.

Free Press reporter Mike Williams covered the personal drama from the time Rivlin had filed his suit to be removed from his respirator at the Oakhill Nursing home. "Disabled in Detroit" columnist Jim Neubacher had talked to him, too. And People Magazine trumpeted that the interview it ran in its Aug. 5, 1989 issue was an "exclusive."

People knew what it was after. Not the facts about the system that had ground down David Rivlin, certainly. Its early August story ("For quadriplegic David Rivlin, life on a respirator wasn't worth living") was aimed at the gut.

Under the headline, "Tiring of life without freedom, quadriplegic David Rivlin chose to die among friends," the drab, horrid picture was limned in, word by word: "For 3 years David Rivlin had lain in the same bed at the Oakhill Care Center outside Detroit, his eyes wandering over the same limited landscape: white ceiling tiles, turquoise walls and drab beige curtains framing a view of a brick wall. He listened to the radio, and when his bed was raised, he was able to watch TV or a movie cassette.

"But nothing," they wrote, "could tune out the sound that symbolized his ultimate imprisonment: the incessant whir of a respirator sitting on a chipped wooden night stand close enough to allow its hose to reach through the hole in his throat."

"The same bed ... the same limited landscape ... ultimate imprisonment ... incessant whir ... chipped wooden night stand." Phrase by phrase, People writers Margot Dougherty and Sandra Tessler built their case that life on a respirator wasn't worth living.

They quoted Rivlin: "The respirator takes away all choice in your life."

And, "I don't want to live an empty life lying helplessly in a nursing home another 30 years."

Rivlin, they wrote, was someone "from whom true life has been taken." People Magazine crafted its article to picture a man whose only real option was death.

All the stories written about David Rivlin were much the same. "The newspaper was committed to the story of David Rivlin," Detroit Free Press reporter Mike Williams told me a month or so after it was all over. Committed to the Rivlin sensationalism, perhaps, but not committed, evidently, to the issues his story revealed.

A reporter could have asked why other quads on respirators lived happy lives while Rivlin planned to die. A reporter could have investigated the system that led to Rivlin's being forced into nursing home life.

Williams told me he'd considered doing a piece about those who tried to reach David Rivlin before his death -- quads themselves or relatives of quads, according to Williams. "Hundreds of people tried to help him, but he closed them off," said Williams.

Williams sympathized with Rivlin. He had tried to explain to these people, he told me -- many of whom seemed quite frustrated that they could not get through to Rivlin -- "that David simply couldn't read all their letters -- that he had to have someone read them to him and that neither he nor the nursing home had staff to stand there reading to him."

Those who wanted to reach Rivlin seemed not to understand the issue, Williams said. Most of the quads who urged him to continue living had "some sort of a support system -- family or church. David had neither." Williams said he'd wanted to write a story after Rivlin's death "to point out that he had no support like they did." The entire time he'd been covering Rivlin's story, he said, what had struck him was "that people simply couldn't understand the problem with the support system."

Mentioned briefly both in Williams' and in Neubacher's pieces -- and barely touched on in People -- was the fact that in the 1970s, when Rivlin had tried to live on his own as a quad, hiring personal care assistants, he'd been unable to get enough money from Michigan Social Services to hire decent help. The figure reported had been "less than $300" a month.

Shortly before Rivlin's death, Williams told me, he had begun inquiring about this money. He learned, he said, that under a 1981 change in Michigan rules Rivlin could have gotten a tiny bit more -- up to $333 a month for personal care -- if Rivlin had called his local Michigan Social Services office

But," Williams continued, "if someone knows how, they can get an exception and get it doubled -- up to $666."

Rivlin had not known about this, said Williams. The local social service office he'd talked to, Williams continued, had said Rivlin could possibly have received much more than that if someone "knew how to work the system."

The day before Rivlin died, Williams had talked to the senior clinical social worker on the spinal cord injury unit at the University of Michigan Medical Center. "I was talking to her about something else," Williams said, but the social worker suddenly mentioned she thought she would have been able to get Rivlin as much money as he would have needed to set up a decent system of home care. She felt she could "work the system" for him.

"I learned about this only the day before Rivlin died," Williams said. "I didn't have time to talk about it with him."

"But I don't know that he would have wanted it," the reporter quickly continued. "He'd had traumatic experiences every time he'd tried it before." Williams stressed that he was "second-guessing" Rivlin when he added, "My impression is that he'd been worn down by these things before." Williams said he didn't talk to this social worker "as much as I could" about the matter; that he'd been talking about something else when it "came out."

This followup story, about the supports that could have been offered Rivlin had he had someone to "work the system" for him, would never make it into the Detroit Free Press. Immediately after Rivlin's death, there had been a train derailment, with toxic materials, and Williams was pulled off the Rivlin story to cover that.

It was nearly 2 weeks after Rivlin's death when he talked to me at The Disability Rag. He said he'd probably not ever get back to the Rivlin story. It was old news.

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