NetNews Usenet Archive 1992 #31/NN_1992_31.iso/spool/misc/activism/progress/9748

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Subject: 09/92 - The Disability Rag (3/6)
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/* Written  9:00 pm  Jan  2, 1993 by [e-mail] in igc:gen.diffable */
/* ---------- "09/92 - The Disability Rag" ---------- */

     A lot of what one sees as justifiable expenses
and gross mismanagement depends on who's doing the looking.
    Dianne Piastro was factually incorrect on only a few points in
her reporting on MDA's financial picture. Her bigger sin, for which
she incurred the public wrath of MDA, was that she refused to paint
their figures into the rosy picture all fundraising charities want --
and mostly get. Watchdog groups like the National Charities
Information Bureau, which have monitored the MDA over the years,
note that accounting practices change over the years at fund-raising
charities. What they don't mention is that they usually change in
order to present a more favorable impression of the fundraiser.

    Income
    Piastro told readers that the public contributed $109.7 million
to MDA in 1990; that the organization received another $9 million
from dividends, interest, rental payments and third-party patient
reimbursements; MDA accused this of being "misleading" because
they said, "MDA provision of service has never been contingent upon
a family's ability to pay" -- something Piastro never alleged.

    Salaries
    "Out of every dollar contributed by Americans last year, 31
cents went into someone's pocket at MDA for salaries and benefits,"
Piastro wrote. She noted that the top two MDA executives received
$502,701 in salaries and benefits; that "the executive director's
assistant made $86,077 and the directors of finance and research
each made $98,000" and that Executive Director Robert Ross was
given a $30,000 raise.
    A recent report by the Chronicle of Philanthropy, in the wake
of United Way of America head William Aramony's resignation in a
public controversy over his $463,000 salary, reported that MDA
executive Director Robert Ross was paid $284,808, making him the
highest paid executive in the Chronicle's "health" category of
nonprofit organizations.
    MDA did not dispute Piastro's figures. The salaries, they
countered, were "determined by the Association's Board of Directors
based on prevailing standards for positions of comparable
responsibility in organizations of scale similar to MDA's," as if this
exonerated them. Activists say disabled individuals who cannot get
equipment from MDA would do well to ask themselves how salaries
in the six figures jibe with their annual incomes of several thousand
dollars, courtesy of SSI.
    And, MDA added, the "total amount expended for salaries,
payroll taxes and employee benefits represented 28.5 percent" of
the group's total operating expenses as compared to over 40 percent
"for 12 other major health agencies."  MDA is accurate about this,
but it's hardly reason to justify the expense. Indeed, salary expenses
at such groups, say critics, are their most vulnerable point.

    Research
    The real area critics of the Telethon wish they could get some
dirt on is MDA's research grants. Piastro didn't report any. She noted
that $20 million in research grants was disbursed and that there
were 459 recipient projects that got that $20 million. MDA said its
grants ranged from $11,556 to $368,862.

    Program services
    MDA said nothing to dispute what Piastro reported regarding
their program services: $20.2 million for "a total of 315,530
medical exams and diagnostic exams at hospital clinics and for
transportation, summer camp trips, retreats, family education,
support groups, equipment and repairs."
    "That's not much when MDA reports there are more than 1
million Americans with the various neuromuscular diseases,"
Piastro wrote. "Keeping in mind that MDA generally only pays what
medical insurance doesn't cover, the average amount spent for each
of those 315,530 different services was about $64."
    MDA seemd almost pround when it points out that it doesn't
help with things people can use to be more independent and have a
better quality of life here and now.  MDA told newspapers, in its
response to Piastro's column,  that "van lifts, ramps and other
adaptations to homes, vehicular hand controls, devices for prolonged
artificial respiration, etc. -- was many years ago provided on an
individual basis under what was then known as an 'exceptional
service policy.' "  Those services, though, they wrote, "were never
[italics theirs] a formal part of MDA's ongoing authorized programs."
    Today's economic forces, they insist, today "preclude"
offering these "exceptional" services, as they call them. The same
fiscal restraints -- which they accuse people like Hershey and
Matthews of causing with their protests -- create other
"restrictions."
    "The Association provides manual wheelchairs for all those it
serves for whom they are prescribed" [by a doctor; italics ours], MDA
wrote. But "because of the high price tag for powered wheelchairs --
costing upwards of $7,500 -- MDA assists with their purchase when
they are required for education at the 6th grade level and above, or
for employment." This is precisely what Piastro had said in her
column, which they disputed.
    Piastro later noted, however, that rarely were these motorized
chairs paid for entirely with MDA funds; that insurance or Medicaid
often picked up part of the tab.

    Fund-raising costs
    Fund-raising costs are a sore point with all fund-raising
charities, which try to disguise the expenses used to raise funds as
well as possible. Some of these disguises are considered acceptable
by the largely unpoliced fund-raising establishment, even if to many
of us such practices seem unethical.
    Piastro reported that, in addition to its $22.2 million reported
to the IRS, MDA spent an additional $6.9 million "on direct costs for
the 30,400 fund-raising events put on by the 163 MDA offices
nationwide" in 1990.
    "The $6.9 million referred to by Ms. Piastro is not included in
fund-raising expenses of the Association," MDA was quick to insist
in its letter to newspapers. This, it said, was "in accordance with
applicable accounting standards . . . . her assertion that MDA's 1990
fund-raising costs totalled $40.3 million is incorrect. MDA's actual
fund-raising costs are a modest 18 percent -- thanks to the support
of a caring public."
    Apples and oranges. It's all in how it's counted -- what line it's
entered on in the budget. As of 1988, the NCIB  adopted a change in
accounting procedures that allowed groups to allocate costs used for
fund-raising to "program" or "management" categories in its budget
"when certain strict criteria are met." Previously it had insisted
that costs of such mailing  -- "with the exception of direct costs of
any separate public-education piece included in the mailing" -- be
listed as fund-raising expenses.
    If Piastro had been writing her column in the mid 1980's, her
allegations would have been correct. Today's "standard operating
procedures" accepted by charities allow the groups do what some
would consider fudging on the facts.
    A similar sleight-of-hand is at work when MDA insists Piastro
is wrong in her assertion that the production firm George  Schlatter
Productions, Inc. "was paid $313,000 to produce the telethon."MDA
insists that "the sum paid to the company covered its production
costs including staff and office facilities; it was not paid as a
salary or fee to any individual." However, it is a distinction without
merit; Piastro's point, that someone received money for producing
the telethon; that it was not the work entirely of volunteers, is
indisputable. MDA doesn't even try to dispute Piastro's point that
"most TV stations were reimbursed for airtime and production
costs."
    MDA appears to raise its funds and spend them well within
accepted standards for nonprofit charities. The deeper problem is
that activists do not feel that what they spend their money on is
correct.  Activists have looked in vain for evidence of fiscal
wrongdoing. But the real problem is of another sort -- the sort that
should, but doesn't, break any guidelines.
    "Most Americans are astonishingly indifferent to how
effectively charitable organizations use the money that comes their
way," writes James Cook in a report on how charities spend their
money in the October 28, 1991 issue of Forbes magazine. And the
organizations themselves don't seem to care about their
effectiveness either, he points out. "As they tend to see it, the
righteousness of their cause assures the integrity of their conduct,
and anyone who suggests otherwise had better watch out."
    To newspaper editors who had run Piastro's column on their
finances, MDA wrote, "Ms. Piastro's snide suggestion that those
committed to saving the lives of people affected by neuromuscular
diseases are actually callously indifferent . . . reveals not only bias
but a viciousness that should call into question virtually anything
she says about MDA and Jerry Lewis.
    "One can only wonder about the motives of a self-styled
champion of the rights of disabled persons," they wrote, "who seeks
to destroy the most effective force operating in their behalf."
articleends
     articlebeginsThe figures
    In 1991, MDA brought in $103.9 million, down from the $118.8
million of 1990, which had been an all-time high. Over $45 million
of 1991 income came from the Jerry Lewis Telethon, though -- a
record high, says MDA.
    According to its Annual Report, 76.4 percent of its resources,
or $89,737,307, went for Program Services. These included
"Professional and Public Health Education" (19.8 percent); "Patient
and Community Services" (56.6 percent) and "Research" (23.6
percent). Within these percentages are programs such as the MDA
summer camps, which MDA says served around 4,500 campers, and
the 235 hospital-affiliated MDA-supported clinics. The other 23.6
percent of the total budget went to "Management and General"  (6.1
percent) and "Fund Raising" (17.5 percent.)  articleends
     articlebeginsLooking for a Cure.
    In a January 31, 1992 letter to Evan Kemp, Leon I. Charash,
Chairman of MDA's Medical Advisory Committee, wrote that MDA-
supported research has "broken open the DNA secrets and set the
stage for answers to patients' prayers."
    Look a little closer, say critics.
    With MDA, cure is always just around the corner. That's been
the case for over 20 years. Promises of imminent cure always
surface, say critics, around Telethon time. In recent years, the
promise is for genetic breakthroughs.
    MDA's Director of Research and Community Services, Ronald J.
Schenkenberger, said that in the past five years, MDA had entered a
"watershed period for research," starting in the mid 1980s when the
gene for Duchenne's muscular dystrophy was first identified, and
that the current thrust of research was to search for and identify
genes.
    Critics charge that, after "41 years of research, MDA can only
offer genetic counseling to explain inheritance patterns and risk,"
as newspaper columnist Dianne Piastro put it last summer. MDA says
genetic research can do a great deal more; that it can lead to
therapies; therapies that "have reached many more people" than just
those with the neuromuscular disorders MDA covers, said
Schenkenberger. "MDA research opened the doors for treating these
diseases." One of the therapies, plasmapheresis, he said, "has now
been identified as a routine therapy in late-state autoimmune
disorders."
    A review of scientific literature reveals that much of the
essential progress in genetic research, including identification of
the gene for Duchenne's muscular dystrophy, isolated in the mid
1980s, was indeed funded in part by MDA dollars. But critics assert
that genetic research often leads to the practice of advising genetic
screening, and, if muscular dystrophy is a probability, "eugenic"
abortion of the "defective" fetuses. "That's the cure -- stamping out
the fetus," said one activist.
    "Critics maintain that while MDA doesn't spend any money
counseling parents on raising a disabled child, Lewis continues to
play up the misery of disabled children and the burdens on the
family, which can only help promote a climate for rejection of
disabled babies," wrote Piastro.
    Therapies that have resulted from research -- plasmapheresis
(a process in which the blood's plasma is separated from blood cells,
the blood mixed with a plasma substitute and returned to the body)
and intravenous immunoglobulin therapy (based on the belief that
some forms of neuromuscular disease can be counteracted by
injecting large doses of antibodies) are still a long way from curing
disease, say critics. Some accuse MDA of balking just when helpful
therapies are on the horizon, withdrawing support from what they
perceive as promising research as a result of organizational turf
battles; controversy over a procedure called myoblast transfer
therapy involves allegations that MDA removed its support because
of disputes with its leading researcher. MDA counters that it
continues to support myoblast therapy; but adding that "hopes of
individuals seeking assistance often go beyond the realism of
certain research initiatives."
    Groups like the Alliance for Research Accountability note that
whenever Telethon time rolls around, pressure is increased to make
pronouncements that a cure is just around the corner. "The cure has
been 'just around the corner' for decades," said one protester.
    Cure is an iffy thing; what people could be getting now are
services, say critics, yet MDA refuses to provide them. MDA counters
that its services are "the most comprehensive of any voluntary
health agency," but that there are limits. Schenkenberger insists
that MDA's "whole philosophy is to provide the greatest number of
services to the greatest number of individuals." Critics charge that
MDA bases its services on what they claim is an exclusively medical
model that does little to help people live in the community. They are
furious that MDA brags about its help but denies it to those who
aren't in school or who aren't working.
    What's happened in Florida is a good case in point, says John
Woodward, with the Center for Independent Living of North Florida.
Woodward's center has had to pick up the tab for three former
clients of MDA who use respirators because MDA refuses to pay for
respirator equipment or supplies, or to supply respirators.
    MDA has never paid for respirators, says Director of
Community Services, Mike Gault. This respirator policy backfired
when MDA sought to enlist one of its clients in the fight against
Kemp; the client, who had been denied a respirator and had to get her
private insurance to pay for it, instead wrote a letter supporting
Kemp.
    Woodward says his center has had to resort to media appeals
to raise money for the three men, all in their 20's, whom MDA
refuses to serve, and whose bills for respirator-related expenses
run over $10,000 a year. A particularly sore point with Woodward
was that, when seeking media coverage for the problem, reporters
who wrote annually about Jerry Lewis's Telethon at first refused to
believe that MDA didn't cover the men, so brainwashed had they been
into believing that MDA met every one of its "Kids' " needs.
    That, said Woodward, is one of the typical effects of the
Telethon's publicity juggernaut. articleends
     articlebegins                 Laura Hershey on Cure:
    Despite progress in the areas of legal protection and
accessibility, there's still a lingering attitude that what people
with disabilities really need is to be cured. Society wants the
problem to go away, so it won't have to accommodate people with
long-term disabling conditions.
    The idea of a cure is at least in part an effort to homogenize,
to make everyone the same. When I was little and first heard about
racial discrimination, I thought it would be great if people could all
be one color so we wouldn't have problems like prejudice. What color
did I envision for this one-color world? White, of course, because
I'm white. I didn't bear black people any malice; I just thought they'd
be happier, would suffer less, if they were more like me.
    We all have our own ideas about which human condition is best,
based on our own assumptions about other peoples' lives. These
assumptions don't always jibe with reality. People who assume I
live for the day when a cure is found, when I (or future generations)
can live disability-free, simply don't understand my reality. . . .
There's an issue of pride involved. Disability is a part of my whole
identity, one I'm not eager to change -- especially not at the cost of
my dignity and personhood, as the Telethon implicitly demands.
articleends
    sidebarbegins    I do not object to the idea of raising money for
medical research and equipment -- at least until such time that
these things are provided by government funds, as I believe they
should be. . . . However, I believe there are good ways and bad ways
to raise money. By good ways, I mean methods which promote dignity
and respect for the people whom the funds are meant to benefit. By
bad ways, I mean approaches which strip us of our dignity, and set
us apart as objects of pity. That is . . . what the Telethon does. It
emphasizes our helplessness and incompleteness. It shows us, as
Jerry Lewis wrote, as 'half a person.'   -- L. Hersheysidebarends
     articlebeginsHope or Help?
    "For those of us who do live on, not one word or one dime is
devoted to the concept of independence," Cris Matthews wrote MDA's
Robert Ross. John Neunzer's case seemed to prove it.
    In August, 1990, Neunzer caused a stir when the story of MDA's
refusal to get him a motorized wheelchair hit the news. Neunzer had
been an MDA poster child in 1975. Now 25, the California man lived
with parents unable to afford a motorized chair, but, because he
wasn't working and was no longer in school, MDA was refusing to
replace the now-nonworking one they'd gotten him in 1983.
    Neunzer's story made the Los Angeles Daily News. Officials
told the Daily News that the $7,000 cost of power chairs prohibited
their providing them to those who weren't in school or working.
Rising medical costs and "pressure to find the cure" were cited as
reasons. MDA Director of Research and Patient Services
Administration Ronald J. Schenkenberger told the paper MDA was at
a crossroads. "Do we continue to provide this vast array of
equipment we've been providing, or do we jeopardize certain critical
areas of research?"
    Jim Brown, from MDA's PR department, told the Daily News
that "We're hoping we'll be able to raise enough money to continue
to provide the hope that comes from research."
    Future hope versus help today. That's what the issue boils
down to, critics charge, though they put it differently.
    At the end of 1991, Muscular Dystrophy Association chapters
were told by Schenkenberger that MDA would be cutting back its
services, due to "the attack on the Telethon by irresponsible
critics" which, he said, "adversely affected pledge reductions and
contributions." The 1992 budget, said Schenkenberger, reflected an
$11.6 million reduction from 1991. MDA has reduced payments for
physical, occupational and respiratory therapy, cut its research
grants and fellowships by $2.8 million.
    In its campaign to discredit critics, MDA has played up the
cuts. In an Oct. 29 letter, MDA's Director of Community Services,
Mike Gault, told Hershey "your campaign is a factor in what appears
to be a serious financial drop in Association income this year" and
in a November 20 letter reiterated that "There's no question . . . that
your malevolent efforts did have a negative impact upon overall
contributions received by MDA from the multi-state area in which
your broadcast was heard." [Hershey had been a guest on a syndicated
radio talk show discussing the telethon controversy].
    In a letter to independent living centers in May complaining
about Evan Kemp, Gault wrote that "when Mr. Kemp hinders MDA
fundraising, his doing so directly impacts many persons with
disabilities. . . .who count on the durable medical equipment and
other services MDA provides to maintain their ability to pursue
careers and live independently."
    Mike Gault, MDA's Director of Community Services wrote
Hershey late last October that "Your campaign is a factor in what
appears to be a serious financial drop in Association income this
year. As a result, it will be necessary to curtail -- or eliminate
entirely -- certain of MDA's programs."
    Yet Gault told The Rag the group had not made any major
changes in service: "We don't foresee any cuts in services right
now," he said -- other than in the number of physical and
occupational therapy sessions MDA would pay for. "We used to pay
for up to 12 physical therapy sessions a year, and four of
occupational therapy," he said. They were now only pay for only two
a year, he said.
    For critics, however, it isn't the shortfall that has caused the
problem -- it's MDA's policies which put "future hope" over present
needs. For critics, the list of things MDA won't provide add up to an
indictment of the group's lack of interest in helping people live
independently. Neunzer's story and those of  the young Florida men
who need respirator services prove it, they say.
    Schenkenberger says MDA's "whole philosophy is to provide the
greatest number of services to the greatest number of individuals.
Braces and wheelchairs, he says, are the "two most sought after"
services.
    In 1991, MDA says it spent over $50 million on Patient and
Community Services.
    "With all this money," Hershey says, "I would expect the
direct services to be much more extensive, and more relevant, than
they actually are. I would expect, for example, that when a person
develops a condition which begins to limit mobility, that MDA might
come through with some money for access modifications to the
home, so that the family wouldn't have to choose between moving to
an accessible house (which are hard to find) or hauling the person up
and down stairs all day. I would expect some support services for
independent living -- personal assistance services, skills training,
mobility instruction, and the like. I would expect them to provide a
motorized chair for anyone who wants one. Such a chair can boost a
disabled person's quality of life enormously.  MDA has fairly
restrictive criteria for determining who receives a motorized
wheelchair.
    MDA won't provide motorized beds that allow one to maneuver
in bed by oneself; they'll   provide only manual ones, critics charge.
It's true, they don't, said Gault  -- but it was a moot distinction, he
suggested. He said MDA would provide "up to the cost of a manual
bed" which he said was $800, and said that the money could be used
"toward the cost of a power bed."
    Gault explained the Association's no-ventilator-equipment
policy by pointing out that costs would be so expensive as to eat up
money for other services.
    Gault confirmed critics' charges that MDA will not pay more
than  $500 a year for equipment repairs. The $500 could be spent to
modify a wheelchair for a respirator, he said; critics had asserted it
couldn't.
     Critics charged that "those who are rotting in nursing homes
are at the mercy of someone to push their chairs" and that MDA by
not allowing motorized chairs for children was "fostering
dependence." Yet Gault called critics' contention that MDA provided
"no support services for independent living" "pure propaganda."
    Yet he said it was true that MDA did not provide motorized
wheelchairs for children under 11 years old, nor would they provide
them for anyone not in school who wasn't working.
    MDA "has not traditionally provided attendant care," said
Gault; when pressed, he said they had no plans to do so. When asked
if they paid for home modifications, he stressed that their program
"was primarily medical management services and durable medical
equipment." The emphasis on medical care over help with living
independently is, of course, precisely what irritates critics.
    When pressed about home modifications, Gault said that MDA
would pay for an occupational therapist to go to the home; that
they'd refer people to independent living centers, that they'd put
them in contact with carpenters' unions and the like. But no, he said,
they did not pay for things like ramps.
    The accusation that MDA doesn't pay for independent living
services irritates its staff. "If we went to independent living and
advocacy groups and asked them to provide medical services, we'd be
criticized," said Schenkenberger. "Yet we're being criticized for
having the broadest range of services of any voluntary health agency
in the country."  Their mission was not in that area, MDA stressed;
other groups provided those services. "If we were in a position to
expand, we would consider it," said Schenkenberger. "MDA has been
involved in a number of coalitions, and as a consortium with other
agencies, we've advocated" for issues like rights and independent
living, he said. "We can't be all things to all people."   article ends
    sidebar begins               Ignorance? or Malice?
    Letter to Laura Hershey From Mike Gault, MDA director of
community services, November 20, 1991
    . . . Since your letter of November 4 makes unmistakably clear
your exclusive interest in propaganda as opposed to rational
discourse, I'm not going to devote any of this Association's
resources to a point-by-point rebuttal of the misguided, downright
false -- and frequently cruel -- statements with which your
communication is rife. I do, however, want to straighten out one
gross misimpression your communication leaves, especially since it
appears to have been written more for publication in The Disability
Rag than for any other purpose.
    Your suggestion that there's some disparity between what MDA
announced on the air as its Telethon achievement and my assertion
that "your campaign is a factor in what appears to be a serious
financial drop in Association income this year" [from Gault's Oct. 29
letter to Hershey] reflects either ignorance or extreme malice, or
both. Obviously, a September 3rd radio broadcast of your views
attacking Jerry Lewis, MDA and its Telethon could not have had any
effect on the Telethon's achievement announced at the conclusion of
the show the previous day. There's no question, however, that your
malevolent efforts did have a negative impact upon overall
contributions received by MDA from the multi-state area in which
your broadcast was heard." sidebarends
     articlebegins Divestment.
    TCI Corporation, the nation's largest cable TV operation and a
major contributor to the Telethon, which says it has given $7
million to MDA over the past four years, may be about to pull its
support from Jerry Lewis's Labor Day extravaganza.
    Though TCI would not confirm this, TCI Senior Vice President
Bob Thompson said their commitment would be reviewed after the
1992 Telethon, which they confirmed that they intend to participate
in. However, for its 60-second commercial spot on the Telethon, TCI
will turn to ADAPT activists in Denver for "creative input."
    Activists believe the cable industry giant will pull out of the
Telethon after this season. Laura Hershey, of the Tune Jerry Out
Coalition in Denver, said the group presented their request to TCI as
"an opportunity to get out gracefully before the world starts looking
at telethons as a relic of the past."
    Hershey was with 40 disability activists who met with TCI
public affairs staff in June to explain the problem with Jerry Lewis
and MDA's approach to fundraising. Executives, said Hershey,
responded positively, and seemed genuinely interested in hearing
Jerry's Orphans' views, allowing activists to distribute anti-
Telethon literature to employees.
    Thompson said the activists' points about the Telethon and the
image it created of disabled people were eye-opening for the
corporation. "The communication was enormously fruitful," said
Thompson. "It has contributed to the evolution of our thinking."
    Thompson said that while TCI believed MDA was "doing good,"
he recognized that activists were upset about Lewis's
characterization of their lives. "I'm talking about not offending
people when you're talking about them," he said.
    The effort to get major contributors to pull out of the Telethon
is starting to have an effect; TCI said it has heard from activists
from around the nation about problems with the Jerry Lewis
telethon.
    In Nashville, home of Service Merchandise, ADAPT of
Tennessee met with Service Merchandise Chairman Raymond
Zimmerman to ask him to stay off the Telethon. Unlike the meeting
with TCI officials, the Service Merchandise meeting yielded little.
According to Tennessee ADAPT organizer Diane Coleman (repeated
calls to Service Merchandise spokespersons went unreturned),
Zimmerman refused the group's request that he not appear on the
Telethon, calling the corporation's appearance "advertising at our
expense." Coleman says Zimmerman responded that to stay off the
Telethon would hurt their fundraising ability among their employees.
"That's not very logical, since the money is raised before the
Telethon," Coleman observed.
    Rev. David Whited, a Nashville member of MDA's Task Force,
and, like Coleman, a person with one of the neuromuscular diseases
MDA works against, who also attended the meeting, said Zimmerman
had felt that to not appear on the Telethon would be a "betrayal of
Service Merchandise's 24,000 employees and millions of customers"
who had helped raise funds. Whited said Zimmerman appeared on the
Telethon "to give recognition to what his employees and customers
do" for MDA.
    Whited insists MDA's charter restricts it from doing the things
Jerry's Orphans demand. Even it it weren't restricted, the drop in
contributions is causing it to restrict, not expand services, he said.
Things like barrier removal and pushing for rights are beyond the
scope of the group's mission.
    Whited said Zimmerman vowed in the meeting to fight Lewis's
removal from theTelethon. articleends
     articlebegins. About our Jerry
    Now in his early 60s, Jerry Lewis will have been at the
telethon gig 27 years when he goes on stage this Labor Day in Las
Vegas. In some ways, his profile is that of any top entertainer:
larger-than-life, egocentric, brooking no criticism.
    But unlike other entertainers in the charity scam, Lewis has
made MDA more than a cause. "What I get for what I do can't be
measured in dollars," he told the Los Angeles Times's Charles
Champlin in an article in its September 2, 1990 Sunday Magazine.
"It's a dream; an obsession."
    Why Lewis took on the muscular dystrophy cause remains
shrouded in mystery, as Lewis wants it. His first Telethon was in
the mid 1960s. According to Maurice Zolotov, writing in the June,
1986 Readers Digest, "Friends at MDA persuaded him to undertake"
the Labor Day Telethon in 1966. MDA "hounded him 'til he agreed."
    Lewis told Champlin the reason he got involved "was a secret"
-- one he'd protected "from the very beginning. . . . I've told my
associates that when they say the story could really help the cause,
I would tell it -- but until then, sorry."
    "Why does it matter what motivates Jerry Lewis?" asked
MDA's Jim Brown, when questioned about Jerry's secret. "We don't
know why Jerry's involved, but thank God he is!"
    Though we may be no closer to knowing why Lewis has an
obsession, it's clear that it is one. And it's clear that, like many
highly egotistical people, the obsession is one he won't abandon
without a fight.
    One in the industry who spoke on the condition of anonymity
called Lewis "an egomaniacal comedian" who was "highly insecure
and filled with braggadocio," calling him "one of the extreme
cases."
    Lewis loves to tell reporters that "I'm the only entertainer in
history to be nominated" for the Nobel Prize.
    "My staff kids me, 'Yeah, but you didn't win,' " he told a Los
Angeles Times reporter. "I say, 'Yeah, but I did get nominated.' "
    "He was always giving a performance," writes Zolotov. "Patti
Lewis, Jerry's ex-wife, told me that several months after they were
married she was awakened one night by . . . her new spouse . . .
sitting bolt upright in bed, his face wearing a broad smile, his eyes
closed. He folded his arms, slowly bowed from the waist, then lay
back and resumed his peaceful snoring.
    " 'Imagine,' Patti said, 'a man who takes bows in his sleep!'
    "The quickest way to upset Jerry," Tony Curtis told Zolotov,
"is not to laugh at those weird things he does. He's only doing it to
get your love."
    Lewis "knew the pain of never being loved by his parents
because they were always on the road," Zolotov reports.  "Jerry
made his theatrical debut at age five, singing, 'Brother, Can You
Spare a Dime?' When his parents heard the applause, they hugged him
-- and that opened the first door for little Jerry."
    Telethon critics are fond of pointing out that Lewis had a bad
attitude toward disability well before he joined the Telethon.
Zolotov calls the role Jerry played in movies as that of the "idiot
kid."
    "I discovered that the line between the 'idiot kid' he played in
pictures and the 'real' person was nonexistent," writes Zolotov.
    Despite years around disabled people, Lewis's attitude has
evolved little from the days when he thought it cute to play the
"idiot kid." In an interview in the Chicago Sun Times a year ago,
Lewis told reporter Richard Roeper that "I have a problem with
Entertainment Tonight because they always . . . make me look like a
mongoloid." James B. Gardner, president of The Arc, which advocates
on behalf of people with mental retardation, wrote to Lewis: "You, of
all people should know better."
    Lewis makes clear from things he says in interviews that he
clings to stereotypes about disabled people. The "Kids" image is all
Jerry's. He promotes adult clients as "Kids" exclusively -- and it's an
image he loves. "The stars of my show are the kids," he told
Champlin. "I don't care what you surround the kids with, nothing's
ever comparable to the kids themselves. People may not remember
what was on the show, but they remember the kids."
    Critics say MDA's promises to do better by showing adults
with MD make little impact as long as Lewis touts the fact that
adults with neuromuscular diseases are his kids.
    "The one thing the kids don't want is for you to be saddened by
what's happened to them," says Lewis, latching onto another
stereotype. "There's something about neuromuscular disease that
gives them tremendous sensitivity, insight into other people."
    Nine years ago Lewis had open heart surgery, a double bypass.
Since then, he tells reporters, he's changed: no more cigarettes, very
little alcohol, more sleep, less stress. "I allow myself only five
minutes of stress at a time," he told Champlin two years ago, before
Jerry's Orphans had been born. "If I've got an ugly situation," he told
him, "I face it right away and then dismiss it; I don't hold it."
    Yet in the next breath, he's telling Champlin that charges that
the telethon is an ego trip for him "drive him crazy."
     "I put two or three hours a day at least, 365 days a year, into
the Association," Lewis told Champlin. "It's the most important
thing I do. I mean to beat it. I took it on like a boxer takes on an
adversary." If his selection of the image  of a boxer seems oddly
inappropriate for a man claiming to want to eliminate stress, it
seems to be vintage Lewis, the man who will brook no interference
with his Telethon.
    "I would fight to the death anyone who challenges why I do it,"
he warns. article ends
    sidebarbegins
    'Huge amounts of  time'

    From a February 6, 1992 letter from Jerry Lewis to President
George Bush

    Dear Mr. President:
    Permit me to have the immodesty to say that if ever there was
a "Point of Light" in the sense that you've used that term with such
profound effect, I'm it! And so for that matter are the two million
MDA volunteers who make what I do each Labor Day weekend and
throughout the year possible.
    For over four decades we've been devoting huge amounts of our
personal time and energies to try to rescue hundreds of thousands of
Americans from the disability and death caused by 40 tragic
neuromuscular diseases.  Now, just as our long effort is beginning to
bear real fruit in terms of genetic research breakthroughs that put
treatments and cures right around the corner, we're being lambasted
in the media with phony, unsubstantiated charges that attract
sensation-minded journalists.  Worst of all, this manipulation of the
press by a few media-wise radicals is being encouraged and fueled
by the man you appointed to enforce the rights of the people whose
lives we're trying to save.
    I'm talking about Evan Kemp, Chairman of the Equal
Employment Opportunity Commission, who attacked MDA a decade
ago . . . and has now, for whatever reason -- begun misusing the
power of his governmental office to renew that attack with new
vigor . . . .
    The blitzkrieg of critical abuse we at MDA have had to
withstand over the past several months has had a severely
demoralizing effect on me and MDA staff and volunteers, not to
mention the fact that it's exacerbated the fund-raising shortfalls
we already faced as the result of the recession. If this undeserved,
vicious attack now has the blessing of the nation's highest office, I
don't see how I'm going to be able to do the Telethon on which MDA's
programs depend so crucially.  If that happens and MDA goes down
the tubes as a consequence, I don't have to tell you who's going to
have to pick up the pieces . . . .
    Obviously, MDA isn't going to collapse overnight but anyone
who imagines that the Association is incapable of gradual collapse
in the face of the kind of abuse we're taking is kidding himself . . . . I
urge you to act to protect and preserve the invaluable American
private-sector institution . . . with a categorical disavowal of Mr.
Kemp's assault on MDA. sidebarends.