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Text File | 1994-02-01 | 45KB | 768 lines

                        OF NOTE...
                        News to Use

Special Abled Edition (41-50)                         December 1, 1993
Earl Appleby, Jr., Editor                             CURE, Ltd.

                               ABLE Aids

"Jay Leisner broke his neck in a trampoline accident four years ago. A
diving accident at his son's Boy Scout camp two years ago broke Dan
Krebill's neck. The accidents left both men partial paraplegics--
paralyzed to different degrees from the neck down--but, thanks to
advanced, and expensive, technology, they have regained some
independence through the ability to drive...Leisner and Krebill were
part of a training session in accident avoidance...at the Summit Point
Raceway sponsored by the American Automobile Association...The program
is designed to provide a controlled setting to practice emergency
maneuvers...If a problem arises,...the student and instructors can see
if it can be resolved, either through more training or changing the
design of the vehicle's equipment." (On Their Own, Joe Saunders,
Martinsburg Journal, 7/14/93)

"Harry Smootz invented gadgets to help his disabled wife to move
around while she was alive, but now that she's gone, he builds them
for others. Mary Smootz suffered from an illness that made her arms
and legs swell up, causing her to be bedridden. 'I was privileged to
keep her here as long as she could live,' Smootz said. Before she died
last year, he cared for her in their home, building devices to make
movement easier for her. 'All this came up because of my wife,' said
Harry Smootz, 82, gesturing to the inventions in his living room."
(Some Wait for a Visit from an Inventing Angel, MJ, 10/9-15/93)

                               ADA Acts

"For the physically challenged, sometimes it is more than the physique
that gets challenged. Sometimes your sense of pride takes a beating
too. That's how it was for Rick Douglas when he was told that if he
wanted to board a United Express commuter plane recently at Dulles
International Airport, he would have to crawl into it. So he did. Mr.
Douglas, who uses a wheel chair because of multiple sclerosis, dragged
himself up five steps and crawled into the plane...At the other end,
he had to drag himself off...Mr. Douglas...has more clout than most of
the disabled do. He happens to be executive director of the
President's Committee on Employment of Persons with Disabilities. And
the whole sorry episode could hardly have happened on a more
appropriate occasion. Mr. Douglas was flying to give a speech in
Allentown, Pennsylvania to celebrate the first anniversary of the
Americans with Disabilities Act (ADA)." (Flattening Obstacles in Lives
of the Disabled, Clarence Page, op ed, Washington Times, 8/6/93)

"Your July 20 editorial 'The Disabilities Act's down side' presents a
distorted and inaccurate picture of the Americans with Disabilities
Act (ADA) and employers' efforts to comply with the law. Contrary to
your assertion, the US Equal Employment Opportunity Commission (EEOC)
has not found employers to be 'newly hesitant to hire the disabled.'
Rather, consistent with the ADA, most employers are earnestly
complying with the law and are beginning to focus on individual's
abilities, rather than disabilities. These good-faith efforts further
the ADA's goals of eliminating discrimination due to unfounded and
misinformed myths, fears, and stereotypes about disabilities." --
Philip Calkins, acting director, Communications and Legislative
Affairs, US Equal Employment Opportunity Commission, Washington, DC.
CURE Comment: Why is it that victims of discrimination are always
expected to accept the "good faith" of those with a track record of
discriminating against them? Frankly, we'd be a lot more impressed
with some hard data showing decreased unemployment among people with
disabilities than the standard political rhetoric that we find quite
patronizing. After all, "faith" without "works" is dead. (Employers
Aren't Tied Up by Disabilities Law, Calkins, let-ed, WT, 8/10/93)

                           Against the Odds

"When Joseph Dawley got Parkinson's diseases, his hand began to shake
and he thought his life as a painter was over. But he discovered how
to make the illness work for him. Now a much better--and more
successful--artist, he says, 'You simply have to know how to work with
the shake.'" (The Rebirth of an Artist, Claudia Dowling, Life, 6/93)

"Declared terminally ill with emphysema in 1986, Audrey [Ghizzoni] has
hung on for more than seven years, to the great delight of her family,
her friends, and many acquaintances who like to watch the predictions
of doctors go glimmering." (Audrey's Final Months: Part 20, Bob Levey,
Washington Post, 6/14/93)

"But first and foremost this voyage is for me, you have to take care
of yourself. For me it's the challenge of doing things. I want to be
the best sailor I can be." --Hank Dekker, 58, setting out on his 30-
foot sailboat "NFB" from Baltimore's Inner Harbor to become the first
blind person to sail across the Atlantic solo. (Blind Sailor Will
Challenge Atlantic, Martinsburg Journal, 7/27/93)

A tree rolled on to Donald Wyman's left leg on July 20 in a remote
area about 10 miles from Punxsutawney, PA. After shouting in vain for
help for an hour, the 37-year-old New Bethlehem construction worker
cut through crushed flesh and a compound fracture with his pocket
knife. Wyman then pulled himself to a bulldozer, drove it a quarter of
a mile to his pickup truck, and hanging on to a tourniquet with one
hand drove the standard-transmission vehicle to a farm about a mile
away, where the farmer drove him to the hospital. "He left here with a
big smile," says Hank Wilson a spokesman for Punxsutawney Area
Hospital in Jefferson County, where a fund has been set up to help
Wyman with medical costs. (Man Who Cut Off His own Leg Leaves
Hospital, Morning Herald, 7/27/93)

"A blind sailor thwarted in his plans to sail solo across the Atlantic
...plans to try again this summer if repairs to his 30-foot boat can
be completed quickly enough. If the repairs aren't finished in the
next two weeks, Hank Dekker will just wait and make the crossing next
year...'This trip...is not a failure. This is just an emergency stop.'
Dekker, 58, of Novato, California,...headed for shore on engine power
after his boat's electric system failed. That failure left him without
his computer navigation system or running lights that would warn other
ships of his location." (Blind Sailor Says Delay Only Temporary,
Martinsburg Journal, 8/3/93)

"It's a small goal: to be able to pinch his left thumb and index
finger together. But to Nicholas Starr, it's a big miracle to have a
goal at all. Six months ago, the CIA analyst was nearly killed by a
gunman who ambushed five motorists near the CIA entrance in northern
Virginia...Two bullets tore into his upper left arm and he can hardly
move his hand or his fingers. Which is why nearly every afternoon,
Starr, 61, goes to a small office in downtown Vienna for an hour-and-
a-half session with an occupational therapist...[Berger] Kahn, 37, who
has specialized in hand therapy since 1985, has seen few cases as
difficult as Starr's. Not only are his injuries severe, but fractures
of the upper arm and nerve injuries, in combination, are rare in her
practice. Even with therapy, Starr may never be able to grind pepper
on his food or button his cuffs. But he can learn to use his hand on
what Kahn calls an 'assist.' She can even show him how to tie his
shoes with one hand...Sometimes as Kahn massages the scar tissue on
his left forearm, [Starr's] thoughts drift back to January. 'I don't
want to be angry,' he says. 'It just eats you up...I could spend the
next 20 years feeling sorry for myself, and I don't want to do that.'
He straightens his back and says, 'Real men don't say, 'Why me?''"
(Fighting Back, Margaret Thomas, Washington Post Health, 8/10/93)

"It is true that Beethoven was not exactly a social butterfly, but
that was because he was isolated by his deafness and smallpox-scarred
face. Though sometimes arrogant (and deservedly so!), if praised too
heavily Beethoven was known to point to Handel, Bach and Mozart as his
musical superiors...Beethoven was a remarkably warm-hearted person who
loved his fellow man and graced the world with his profound genius. It
mystifies me as to why or how anyone could pin the label 'jerk' on
him. Perhaps, Ms. Horowitz was thinking of Wagner or Newton, or
perhaps she wasn't thinking at all." --Fareed Suheimat, Arlington, VA.
(Who's She Calling a Jerk? Suheimat, let-ed, Washington Post, 9/3/93)

"Sharon L. Monsky has always thrived on competition. As a teenager,
she traveled around the world as an internationally ranked figure
skater. In the early 1980s, she became a management consultant at
McKinsey and Company, where her life was a series of 12-hour days and
late-night, cross-country flights...Sharon Monsky is still running
flat out. But the competition is no longer about promotions and pay
raises. In 1983, her McKinsey career was cut short when she was
diagnosed with an obscure, but often fatal, autoimmune disease called
scleroderma. Now, in a race for her life, the hard-charging 39-year-
old is managing a foundation she started in 1986 to help find a cure.
'That's the contribution I want to make in my life,'she says. 'That's
my mission.' Little is known about scleroderma. Why it occurs remains
a mystery. Nevertheless, the medical establishment's best guess is
that some 300,000 people suffer some form of the disease. It tends to
strike women in their childbearing years...Despite its reach, however,
scleroderma has never garnered much in the way of research dollars."
(A Fast Tracker on a Life-or-Death Mission, Amy Barrett, BW, 9/20/93)

"Sara Peters weighed 15 ounces when she was born. A large box of
Cheerios weighs more. She was so tiny that she could wear her mother's
engagement ring-a size 4-on her arm. and at only 25 weeks, she was so
premature that doctors at Fairfax Hospital gave her virtually no
chance of survival....As a team of doctors and nurses in the delivery
room worked intensely on Sara's fragile body, her 27-year-old mother,
Tracy Peters, looked over her newborn daughter kick her feet. 'Fight,
Sara!' Peters shouted. 'You can do it!' Sara did." (Tiny Sara's Big
Battle, Patricia Davis, Washington Post, 11/9/93)

                               Care Less

"To many doctors and ethicists, surgery that has almost no chance of
success is morally and economically indefensible. 'It's certainly not
the best way to spend scarce resources,' says [Arthur] Caplan,
[director of the Center for Biomedical Ethics at the University of
Minnesota]. But the Lakebergs, who have no medical insurance, refuse
to let the extraordinary expense of surgery stand in their way.
'Families won't say 'stop' because they don't want to feel guilty.'
says Caplan. 'You've got to present options in a way that let doctors
bear the responsibility and the burden.'" CURE Comment: The "burden"
of what? Euthanasia. The families CURE defends don't say "stop"
because they love their children, their spouses, their parents,
regardless of disabilities, illnesses, and age. Unlike Dr. Caplan,
they don't understand why it is the lives of the loved ones of the
poor, the uninsured, and underinsured don't deserve the same vigorous
defense as the baby of a Rockefeller, the mother of a Kennedy. They
have no reason to feel the guilt that should be the normal reaction of
those who harass them and even go to court to declare them incompetent
because they are incapable of understanding why their baby's life must
be sacrificed on the altar of checkbook euthanasia.

Proposed changes in Maryland Medicaid regulations aimed at cutting
costs for patients who rely on breathing assistance by transferring
them to nursing homes from hospitals may threaten the closure of the
state-run Western Maryland Center and private long-term care hospitals
in the state. More than 60 ventilator patients are currently cared for
in such facilities. There have been repeated efforts to close the
Center and last year state health officials tried unsuccessfully to
privatize it. Joyce Brown, chairman of the Center's advisory board
warns allowing nursing homes to care for ventilator patients could
undermine the need for chronic care hospitals like the one on
Hagerstown. (MD Rewriting Medicaid Rules for Ventilator Patients, Deb
Reichmann, Morning Herald, 9/1/93)

"There is an incentive to avoid excessive expense and for people who
have a disease that is considered incurable, the temptation will be to
undertreat...Physicians may well adopt the attitude that treatment of
people with conditions like this is a waste of money." --Mathilde
Krim, chairwoman, American Foundation for AIDS Research. CURE Comment:
CURE fully shares AFAR's concerns about the nontreatment dangers the
Clinton health plan poses for person's whose "quality-of-life" or
prognosis fails the TAB test. (Experts Fear a 'Temptation to
Undertreat,' Richard Price, USA Today, c. 10/18/93)

Before the Nazis directed their murderous attention to the
extermination of the Jews and other minorities, they regimented
Germany according to a "quality-of-life" ethic developed over decades.
In The Nazi Doctors, Robert Lifton describes the process through which
the medical profession became subservient to the Nazi "politics of
meaning." "There was one area in which the Nazis did insist upon a
clear break with medical tradition. They mounted a consistent attack
upon what they viewed as exaggerated Christian compassion for the weak
individual instead of tending to the health of the group, the volk."
One of the first products of revised medical attitudes was the
euthanasia program. The Hillary Clinton task force commissioned "a
panel of outside experts to lay out a value framework to guide health
care reform." The identities of most panelists were kept secret. Noted
the Los Angeles Times, "White House Task Force officials refused to
discuss the work of the ethics panel and said they had prohibited its
members from talking publicly about their deliberations." (Echoes of
Auschwitz, William Grigg, New American, 11/1/93)

                               Cloning Around

"Dr. Hall's experiments purposely used defective embryos that would
die of their own accord. Nevertheless, man is not known to shun
technological breakthroughs, so sooner or later-and probably not too
much later-we'll have to figure out what bounds should be placed on
cloning. Eventually, would parents perhaps keep a clone in cold
storage just in case a family member might need an organ or tissue
transplant? What is to be done with non-defective embryos used in
future experiments-should they be nurtured to birth? Would it become
common practice for parents to 'select' their children according to
certain physical or mental characteristics?" CURE Comment: With the
search-and-destroy missions of prenatal euthanasia the latter is
already the tragic case. Note the editorial's endorsement of the
discriminatory concept that human beings who have disabilities-in
"quality-of-life" jargon, who are "defective"-are fair game as guinea
pigs. (Cloning's Implications Serious, editorial, MJ, 11/8/93)

                           Courting Disaster

"The case began in 1988 when attorney William Bentley Ball of Harris-
burg, PA sued the public school district for refusing to provide an
interpreter for James (Zobrest), a student at Salpointe Catholic High
School. Previously, James had attended the public Arizona School for
the Deaf." (Zobrest v. Catalina Foothills School District) (Supreme
Court Upholds Religious Rights in Zobrest Decision, Wanderer, 7/8/93)

Jeremy Rifkin's The Foundation on Economic Trends and the Physicians'
Committee for Responsible Medicine is suing the National Institutes
for Health (NIH) for violating their own rules for protection of
children. The suit filed in Federal District Court in Washington, DC
charges that NIH experiments using genetically engineered human growth
hormone hGH on "short children" between the ages of 9 and 14 exposes
them to greater than minimal risk, while failing to present a prospect
of direct medical benefit. (Lawsuit Targets NIH Child Growth Research,
Robin Herman, Washington Post Health, 7/13/93)

"Dr. Leo Alexander, who researched information on Nazi Germany for the
United States during the Nuremberg war crimes trials, warned just
before his death in the '80s...that in modern America (like Germany of
the '30s) 'the barriers against killing have been going down.'...In
early November, Dr. Jack Kevorkian declared that assisted suicide
should be used for quadriplegics, whom he considered in 'emotional
pain.'... Howard Simon. director of the Michigan branch of the
American Civil Liberties Union (ACLU), said it should be an 'option'
for those with a permanent disability...This year, the Michigan ACLU
launched a suit to legalize assisted suicide...The ACLU suit set no
standards of proof assuring that the people involved wish to die and
were not killed against their will...There are many who would be only
too glad to take advantage of this--relatives who do not wish to care
for sick patients, heirs who want their money, nursing homes or
hospitals with prejudices against them. Dr. Wolf Wolfensberger of
Syracuse University...estimates that such policies account for 200,000
to 400,000 deaths each year." (A Clear and Present Danger, Ron Siegel,
op ed, CTC, 7/18/93) Editor's Note: Ron wrote an amicus curiae for the
Handicapper Caucus of the Michigan Democratic party in the ACLU case.

Sigfried Cruz, 40, of Clarksburg, WV, files a $6 million lawsuit
against the West Virginia University College of Law charging his test
score should not have been a deciding factor when he was denied
admission in 1990, and again in 1991, because it was not "a good
indicator of what a disabled person can do in school." Cruz says he
was rejected because he is Hispanic and disabled. (Disabled Hispanic
Man Sues Law School, Martinsburg Journal, 8/11/93)

                            Dateline World

"The Medical Council in New Zealand has given its support to an Otaga
University bioethics research center report that recommends starvation
for patients who are in a 'persistent vegetative state.' The report...
says withdrawing food and water is the same as stopping 'futile
treatment' and is not euthanasia." CURE Comment: If food and water
that sustains life is "futile" because it doesn't cure coma, is the
diabetics' insulin futile because it doesn't cure his diabetes?
Denying food and water kills the patient--starves and dehydrates him
to death. Is that the same as forgoing futile treatment? As the
quality-of-lifers broadly define it, it is. (New Zealand, Communique,
7/23/93)

A special section of the Summer 1993 Cambridge Quarterly of Healthcare
Ethics is devoted to neonatal euthanasia. "Quite possibly as a natural
outgrowth of the euthanasia movement there," the editors observe,
"concerns about incompetent patients qualifying for the 'kindness' of
euthanasia have led to reports of active involuntary euthanasia, not
only of adults but of handicapped newborns." (Infanticide Rampant in
the Netherlands, NRL News, 9/30/93)

                                Eye Say

As the coordinator for Dog Guide Users of West Virginia, Jessie Rayl,
a Martinsburg woman who is blind, wants the public to know some
important things when encountering guide dogs. "When someone
approaches the dog and starts talking to her without asking first, we
can loose our concentration and sense of direction. The dog will never
bite someone, but it can be very distracting." --Jessie Rayl. (The
Gift of Sight, Tara Baker, Martinsburg Journal, 7/13/93)

"On the wall by the doorway leading to Reba Burkett's comfortable
kitchen hang two framed 8-by-10 graduation photographs--not of her two
grown children, but of two family members equally beloved. Dunbar and
Hopkins. The handsome black Labrador pups were raised by the Burketts
and then given up an early age to be trained as guide dogs for the
visually impaired. In their color graduation photos from the Guiding
Eyes for the Blind, or GEB, school in Yorktown Heights, NY, Dunbar and
Hopkins are posed regally beside the two women with whom they
graduated and now live, Dunbar in Washington state and Hopkins in
Massachusetts." (Leading the Way, Marylou Tousignant, WP, 8/19/93)

                             Family Affair

The National Center on Child Abuse and Neglect reports that children
with disabilities are abused and neglected far more frequently than
other children. Sen. Christopher Dodd (D-CT), sponsor of the 1988
legislation mandating the study, says its findings underscore the
"tremendous economic and social pressures that are crushing" many
families with children who have disabilities and the need to help
them. (Disabled Children Are Abused Most, Washington Post, 10/7/93)

                              FDA Files

The Food and Drug Administration (FDA)'s Endocrinologic and Metabolic
Drugs Advisory Committee recommends FDA approval of Nutropin,
Genetech's recombinant human growth hormone, which may help children
with kidney failure keep growing. (FDA OKs Growth Drug to Help Kids,
Morning Herald, 10/25/93)

                           Foundation Facts

"Question: Why do you think charitable contributions are declining?"
"People are generally dismayed at the amount of overhead and executive
salaries at some of the charitable organizations." --William Hurst,
68, retired, Garden City, SC. "The high administrative costs
associated with some of the charitable organizations annoy people
because it seems than when you give money for people in need, they
don't receive very much." --Merle Holden, 47, insurance agent,
Nappanee, IN. (Voices Across the USA, USA Today, 6/29/93)

"Ed McMahon, the pitchman for the Publishers Clearinghouse $1 million
sweepstakes,...has filed suit to prevent American Veterans Assistance
Corp., a California charity, from using his name to solicit money for,
among other things, a veterans' shelter. More than 90% of the millions
raised so far, according to a separate complaint by the California
attorney general, was actually funneled in fees to several fund-
raising companies owned or under contract to the man who controls
AVAC, a former clothing-store owner named Mitchell Gold. 'I wanted to
jump in with both feet helping veterans, only to be deeply
disappointed,' says McMahon, a onetime Marine airman. 'We have to make
sure that charities and nonprofits are doing the Lord's work.'"
(Remember the Greedy, Adam Zagorin, Time, 8/16/93)

"Jerry Lewis avoided reporters as he prepared for his 28th annual
Labor Day telethon in the face of criticism from a small but vocal
group of disabled activists. They contend Lewis uses pity to coax
contributions for the Muscular Dystrophy Association. He denies it,
but recent telethons have taken a more positive approach in showcasing
the mainstreaming of people with disabilities. Activists plan to
picket some 200 television stations carrying the show Some activists
have also picketed venues where Lewis performs. Marta Russell, who
helped organize a demonstration at KTLA station in Los Angeles , a
cerebral palsy victim who uses a wheelchair, said in a telephone
interview 'This country needs to eliminate those charities which raise
money and it is questionable as to how the money is spent. Very little
is getting to the person with disability.'" (Jerry Lewis Dodges
Criticism of Role in Muscular Dystrophy Telethon, MJ, 9/5/93)

"'Let somebody come to me and tell me what I do ain't good stuff,'
said Lewis, who has been stung by a small but vocal group of critics
who accuse him of 'pity-mongering.' Some muscular dystrophy sufferers
have said they object to being labeled 'Jerry's Kids.' a term used for
decades. About 15 disabled people protested outside a Manhattan hotel
where local phone banks for the telethon were set up. 'We don't object
to Mr. Lewis raising money to help people with disabilities, we object
to him stereotyping us,' said Kitty Lunn, who was partially paralyzed
six years ago when she slipped on ice." (Jerry, Kids, Celebrities
Collect Record $46 Million in Telethon, Martinsburg Journal, 9/7/93)

"Jerry Lewis has coaxed Americans into setting another record. Over
the Labor Day weekend viewers pledged more than $46 million to his
Muscular Dystrophy Association telethon. As with almost every
worthwhile endeavor these days, the Jerry Lewis telethon is beset by a
small cadre of protesting malcontents who find the telethon's
fundraising tactics to be vaguely offensive. 'We're here to protest
Jerry Lewis' continual degradation of people to raise money,' said one
wheelchair-bound protestor outside a Los Angeles television studio."
(Generous Jerry Lewis, editorial, Martinsburg Journal, 9/10/93)

                            Heart Stoppers

"Kathleen and Timothy Carroll [of Cedarville, OH] knew when they began
adopting disabled children that most of them were at risk of not
living very long. But five of their 10 adopted children have died in
the last nine months, and the latest death has prompted a coroner's
investigation...The deaths began Sept. 21, when Hannah, 6, who had
Down syndrome, died after getting into some household bleach...On
October 19, 7-week-old Chloe, born missing all her brain except the
stem, died after she was taken from the Carrolls following Hannah's
death...Noah, 3, born to a drug-addicted mother and with a history of
seizures, died at home Nov. 15. A month later, Mary, 3, who had mental
retardation and limited motor skills, was found dead in her bed. On
June 14, Josiah, who had cerebral palsy and asthma, was found dead in
his bed. After Josiah died, investigators decided to take a closer
look." (Deaths of Disabled Children Lead to Coroner's Probe,
Martinsburg Journal, 6/29/93)

"The Humphrys were involved in the euthanasia movement because Derek,
an English journalist, had 'helped' his first wife commit suicide when
she was dying of cancer. Ann Wickett, an American divorcee doing
graduate work in England, met Humphry after his first wife's death;
... they were soon married...They started the Hemlock Society to press
for legalized euthanasia in the United States...Ann soldiered on until
1989, when she--like Derek's first wife--was found to have cancer...A
few weeks after Ann's first surgery, and just after she'd started
chemotherapy and radiation, [Derek, who was to reveal that he'd had a
mistress for years,] went on a trip--leaving a message on the
answering machine that he wouldn't be back." (Making Death Your Life's
Work, Mary Meehan, book review, "Deadly Compassion: The Death of Ann
Humphry and the Truth About Euthanasia" by Rita Marker, NCR, 7/4/93)

"For some time now, physicians reaching for authority to end medical
treatment of patients whose quality of life they consider inadequate
have sought to gain acceptance of the concept of "futile care."...
With the demand to end "futile care" we are all threatened with
medically sanctioned death by denial of treatment throughout the life
span whenever disability, serious illness, or chronic disease burden
us with a "quality of life" not meeting the approval of the medical
establishment or the health care bureaucracy." ("Futile Care"--The
Latest Threat to Life, Wanda Franz, PhD, op ed, NRLN, 7/14/93)

"According to an Associated Press story, the Kentucky Supreme Court
ruled July 15, that a lady in coma, Martha Sue DeGrella, 44, could be
killed by starvation and dehydration. Not unexpectedly, the language
of the court attempted to cover up what it was really allowing...In a
feat of semantic gymnastics it went on to say that 'nothing in this
opinion should be construed as sanctioning mercy killing.' Having said
this, the court ruled that you could stop giving this lady food and
water, knowing full well that within approxinmately ten days after
they quit feeding and giving her water she will die as a result of the
agonizing process of dehydration and direct starvation. This is a sad
day for Kentucky. It certainly sets a precedent for killing other
helpless patients." (Euthanasia in Kentucky, Right to Life of Greater
Cincinatti Newsletter, 8/93)

"Harry Elphick was denied bypass surgery [in England] after his first
heart attack because he smoked 25 cigarettes a day. He kicked the
habit, but before doctors could operate he had a second heart attack,
this time fatal. His widow said the surgery would have prevented his
death, and a smokers' rights group called the decision to refuse
surgery 'health fascism.'" (Surgery Denied, Smoker Quits, Dies, Leslie
Shepherd, Washington Times, 8/18/93)

"Doctors sacrificed 7-week-old Amy Lakeberg in a 5 1/2-hour operation
...that gave her Siamese twin sister, Angela, sole possession of their
shared, malformed heart--and a slender hope of survival...Before the
surgery, nurses had painted Angela's tiny fingernails pink and left
her sister's bare. The infant twin's parents interpreted that as a
sign--Amy would die...'It's hard to say goodbye to a living person,'
said the twins' father, Kenneth Lakeberg. (Twins Separated; Survivor
'Stable,' Martinsburg Journal, 8/21/93)

"Our role [as physicians]...is to heal when we can, and to comfort
always, but it has never been to kill." --Jimmie C. Holland, MD,
chief of psychiatric service, Memorial Sloan-Kettering Cancer Center,
New York, NY. "Regardless of whether patients use [Dr. Jack]
Kevorkian's machine or [Dr. Timothy] Quill's compassionate
prescription for sedatives, they are dead by premeditated intention.
In either case, physicians, who are the necesary instruments of the
patient's death, are as such a moral accomplice as if they had
administered the dose themselves." --Edmund Pelligrino, MD, director,
Center for the Advanced Study if Ethics, Georgetown University,
Washington, DC. (Assisted Suicide, Dan Colburn, WP Health, 9/14/93)

"Valedictorian at West Springfield High School and a poet at Princeton
University, John Franklin Hiller was on his way to fulfilling his
academic promise as a graduate student in English at the University of
Virginia in the fall of 1986. Then, on his first day of classes,
Hiller suffered a cerebral hemorrhage that left him partially
paralyzed and barely able to speak. On Saturday morning, seven years
later, he slipped a plastic bag over his head and committed
suicide.... Friends of Hiller's said...he loathed the fact that some
people talked to him as though he were a child....'He had little
faith,' (his father) Jack Hiller said. 'He had a lot of denial.'" (Too
Much Frustration, Too Little Faith, Robert O'Harrow Jr., Washington
Post, 11/2/93)

                             It's the Law

"Each small step can make a difference. To all Americans I say 'Don't
be fearful, don't be afraid of what it takes to comply with the ADA.
Be reasonable, be thoughtful, and be caring, and you can comply." --
Janet Reno, Attorney General. "Meanwhile, Health and Human Services
Secretary Donna Shalala announced that Bob Williams, an advocate for
the disabled who was born with cerebral palsy, was chosen to lead the
federal Administration on Developmental Disabilities...Williams, 36,
comes to HHS from the United Cerebral Palsy Associations Inc." (Reno
Checks Out Businesses, Morning Herald, 7/27/93)

                        Lights, Cameras, Action

"'I cannot do this. Not only do I feel it's wrong personally, it's
totally against the character.'" --Susan Howard, actress. Ms. Howard,
a regular on the TV show 'Dallas,' rejected a script that called for
her to abort a Downs syndrome baby. The changed script provided for a
miscarriage with Ms. Howard subsequently doing volunteer work with
Downs children, a portrayal for which she won an acting award." (CGA
World, Vol. 13, No. 2, 1993)

                              Lyme Light

"Sitting in a wheelchair, wearing headphones to shield out normal
sounds that would be excruciatingly loud to him, 14-year-old Evan
White [of Suffern, NY] whispered his plea to a Senate committee: 'We
can't think. We can't sleep. We need you.' Evan was one of several
victims of Lyme disease, next to AIDS the fastest growing infectious
disease in the country, who told the Labor and Human Resources
Committee of harrowing battles with migraines, lost vision, fatigue,
and other major symptoms. They spoke, too, of frequently mistaken
diagnoses and endless medical bills." (Panel Hears Travail of Lyme
Disease, Washington Times, 8/6/93)

"No rational exists for the administration of intravenous antibiotics
to a patient with a positive Lyme [blood test] whose only symptoms are
nonspecific fatigue or myalgia," researchers from eight medical
centers find in a study reported in the September 15 Annals of
Internal Medicine, who add that the intravenous treatment "incurs
costs and risks that exceed any benefits that might be obtained."
(Treatment for Lyme Is Risky Plus Expensive, Don Coburn, WPH, 9/21/93)

                            My Aching Back

When Harriet Davis, a Laurel, MD housewife, was visiting a new
physician, she advised him of a spinal ailment that had been diagnosed
years ago. "I have syringomyelia," she told him. "Oh, heavens no," the
doctor retorted. "You have chronic back pain. I don't believe in
labels." Says Harriet, still miffed after several years, "He might
just as well have been saying, 'You're just another neurotic female.'"
An estimated 15,000 to 200,000 Americans have the "orphan disease"
syringomyelia. For further information, call the American
Syringomyelia Alliance Program at 301-776-3964. (Beyond Mere Back
Pain, Sandy Rovner, Washington Post Health, 9/7/93)

                          No Place Like Home

Larry Melton and Charles Squires have disabilities and have been
unable to find work. Until recently they lived at the Federal City
Shelter in Northwest Washington. The shelter, which is run by the
Community for Creative Non-Violence (CCNV), moved to evict the pair
after they criticized shelter policies on WPFW-FM. The evictions have
been upheld by a federal judge and CCNV director Carol Fennelly says,
"Now they'll both be out on the street." ABLEnews Editor's Note: I
don't know how "non-violent" that is, Carol, but it sure is
"creative!" (Judge Says CCNV Can Expel 2 Men Who Criticized Shelter,
Michael York, WP, 9/2/93)

                             Now Hear This

TV sets with screens 13 inches or larger sold in the USA must soon
have closed-captioning devices. Nearly all prime-time network TV is
captioned. "We should all have the opportunity to increase the quality
of our lives by hearing a little better," says L.A. Law's Richard
Dysart, who is hearing impaired. Editor's Note: And, as Trisha
O'Connell, director of the Caption Center, reminds us, TABs will
benefit too. "In bed, when a partner is trying to sleep viewers can
mute the sound and read the TV." (More Closed Captions Open
Communications, Donna Gable, USA Today, 6/29/93)

"Facial expressions are very important. The look on the face helps
understand the meaning." -Gloria  Hollen, sign language instructor,
Hedgesville (WV) High School. ABLEnews Editor's Note: For the complete
story see the upcoming ANR9311.ZIP.(Learning the Signs of Silence,
Scott McCaffrey, Martinsburg Journal, 10/13/93)

                              Post-Polio

"For Lauro Halstead, the phrase 'physician heal thyself' has become a
way of life. Halstead is one of 125,000 Americans suffering from post-
polio syndrome...But Halstead is more than a patient. He's also one of
the doctors who defined the syndrome and now heads the Post-Polio
Program at the National Rehabilitation Hospital in Washington. 'When I
talk to patients about this condition, they seem to pay more attention
because I'm fighting the same thing...They know that I know what I'm
talking about.'" (Doctor Learns to Treat Patients by Treating Himself,
Paul Recer, Washington Post Health, 7/13/93)

"Polio survivors who underwent rehabilitation after World War II
learned to push their muscles to the edge. Now, post-polio patients
must do exactly the opposite." (Polio's Second Assault, Laura Saari,
Washington Post Health, 7/13/93)

                             Social Insecurity

"In her first interview since her name surfaced as the probable
nominee in July, Shirley Sears Chater seemed at times overwhelmed by
the sheer size of the agency. But she confirmed that the agency is
considering closing and consolidating some of its 1,300 field offices-
changes that could affect the agency's service to its
beneficiaries....'This city called Social Security Administration is
absolutely awesome,' said Ms. Chater, who is working 14 to 16 hours a
day to learn her way around the place and the issues. She confessed
that she could not find her way on her own from her Washington (DC)
home to her Woodlawn (MD)office because she is too busy reading during
her chauffeured trips to pay attention to the route." CURE Comment: We
hope Commissioner Chater will pay a little attention to the needs of
Social Security beneficiaries, including persons with disabilities,
who do not enjoy the luxury of chauffeurs and take time-say a few
years-to learn her job before axing offices at their expense. (Social
Security Considers Closing Some Offices, New Chief Confirms, Baltimore
Sun, 11/2/93)

                              TABulations

"Eugenics, a science to 'improve' the human race by preventing births
of the handicapped and encouraging births of those with 'superior'
genes, was quite powerful in the United States in the early part of
this century. It led to compulsory sterilization of many retarded and
insane people and to anti-immigration legislation. After the horrors
of the Nazi regime in Germany discredited the idea of eugenics, the
American Eugenics Society lowered its profile and eventually changed
its name to Society for the Study of Social Biology--a group that
still exists today. Eugenicists helped establish such influential
groups as the Population Council, the Planned Parenthood Federation of
America, and the American Society of Human Genetics, a major force in
the spread of prenatal testing and 'selective' (eugenic) abortion." (A
Different Take on the March of Dimes, Mary Meehan, NCR, 8/29/93)

                             Word of Life

"Often the spirit is more important than the letter of the law. When
President Bush signed the Americans with Disabilities Act [ADA] in
July 1990,...there was one important area of life...that the
legislation did not presume to regulate: worship. The ADA in general
exempts churches, synagogues, temples, and a number of other entities
controlled by religious organizations. To encourage religious leaders
and their congregations to examine how people with disabilities are--
or are not--included in their activities, the National Organization on
Disability [NOD] published a 56-page guidebook titled That All May
Worship... For a copy...send a $10 check or money order to National
Organization on Disability, 910 16th St. NW, Ste. 600, Washington, DC
20006. Reduced prices are available for bulk orders." (Making All Feel
at Home in Houses of Worship, Modern Maturity, 6-7/93)

"During the past year, I have visited about 1,000 patients undergoing
open-heart surgery. Some had two, three, or four bypasses. Others had
valves of the heart replaced with mechanical or pig valves. In each
case, the patient's chest was laid open, the life-sustaining procedure
performed, and then the chest was stitched together in cross tiers
like a railroad track. Or, as patients liked to boast, they had joined
'the zipper club.'...A chaplain is welcomed by these heart patients
simply because he is someone familiar and not one of the white
uniforms from a land unknown. The welcome smile leads easily to the
spiritual side of a chaplain's work. The words of prayer are familiar
and easily understood....Quite a few patients have an inner healing as
they mend in body. With time to think as they recuperate, they
rearrange their priorities. Most express the idea very simply by
saying they will be nicer or gentler or more appreciative once they
get back home." --Fr. Bonaventure Stefan, OFM Cap, co-chaplain, St.
Francis Medical Center, Pittsburgh, PA,. (Making the Rounds With a
Hospital Chaplain, Fr. Stefan, Our Sunday Visitor, 10/31/93)

                           Wish We'd Said That...

          It is as presumptuous and ethically inappropriate
          for doctors to presuppose that their professional
          expertise qualifies them to know what kind of life
          is worth prolonging as it would be for meteorolo-
          gists to suppose their professional expertise
          qualifies them to know what kind of destination is
          worth a long drive in the rain. (Felicia Ackerman)

          Words are also actions, and actions are a kind
          of words. (Ralph Waldo Emerson)

          The rhetoric of moderation, of prudence, the eager hope
          of (doing more good) by avoiding radical positions and
          not antagonizing the opposition are all evidence that
          the language of "moderation" and "prudence" are
          euphemisms for impotence. They simply mean, 'If you
          don't have the power, accept compromise. (Damian Fedoryka)

          The gift of life comes in fragile earthen vessels.
          Those who preach death often base their campaigns on
          society's fears of the handicaps of the young and the
          infirmities of the old...The judgment 'I'd rather be
          dead than disabled' is a reminder of the low value which
          some would place upon the lives of those with disabilities.
                                                     (Mary Jane Owen)

                           ...Glad We Didn't

          In order to stabilize world population, we must eliminate
          350,000 people per day. It is a horrible thing to say, but
          it's just as bad not to say it. (Jacques Cousteau)

          For myself, I don't have any problem if I was
          enslaved in a body, having led a full life, and I
          came down with Lou Gehrig's or something like
          that, where I reached the point where I had to lay
          in bed, have people feed me...I won't have a
          moment's hesitation on making that decision. Not a
          moment. (John O'Hair, Wayne County Prosecutor)

                           We Did Say It...

          A "full life" and a TAB life are not synonymous. A
          man's dignity should not depend on whether he
          stands on two feet, sits in a wheelchair, or lies
          in a bed.  Feeding someone is an act of decency
          and should not be a death sentence. Man is not
          enslaved by his body but by hatred, even, perhaps
          especially, self hatred. (Earl Appleby Jr., CURE)

          Is Monsieur Cousteau volunteering to be the first to go?
          To borrow an old expression of his native land, "Pourquoi
          non?" (Why not?) Are some more equal than others?
                                        (Earl Appleby, Jr.)

                        A Word From Our Sponsor

OF NOTE is CURE's biweekly digest of disability/medical news. This Special
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is the moderator of ABLEnews, a Fidonet backbone conference, featuring
news, notices, and resources of interest to persons with disabilities and
those sharing their concerns.

Special Editions include Abled, AIDS, Cancer, Family, Health Care,
Legal, Medical, Mental Health, Seniors, and Veterans.

...For further information, contact CURE, 812 Stephen Street, Berkeley
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