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
"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
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
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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