From: ADAPT <cyanosis@igc.apc.org>
Subject: 09/92 - The Disability Rag (3/6)
Followup-To: alt.activism.d
Originator: rich@pencil.cs.missouri.edu
Organization: ?
Date: Sun, 3 Jan 1993 08:19:26 GMT

/* Written  9:00 pm  Jan  2, 1993 by cyanosis@igc.apc.org 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.