From: ADAPT <cyanosis@igc.apc.org>
Subject: 09/92 - The Disability Rag (2/6)
Followup-To: alt.activism.d
Originator: rich@pencil.cs.missouri.edu
Organization: ?
Date: Sun, 3 Jan 1993 08:19:18 GMT

/* Written  9:00 pm  Jan  2, 1993 by cyanosis@igc.apc.org in igc:gen.diffable */
/* ---------- "09/92 - The Disability Rag" ---------- */

articlebegins: 
A Test of Wills
Jerry Lewis, Jerry's Orphans and the Telethon
"The very human desire for cures . . . can never justify a television 
show that reinforces a stigma against disabled people." It was 11 
years ago when those lines appeared on the opinion page of the New 
York Times -- September 3, 1981. Labor Day. On the tube, the annual 
Jerry Lewis Labor Day Telethon was in full swing.  The article was 
by Evan J. Kemp, Jr., now chairman of the U.S. Equal Employment 
Opportunity Commission. At the time Kemp was Director of the Ralph 
Nader-inspired Disability Rights Center. "Aiding the Disabled: No 
Pity, Please," read its headline.
Evan J. Kemp, a man with one of the neuromuscular diseases the 
Muscular Dystrophy Association  was fighting to cure, was 
criticizing its star-studded fundraiser. Kemp was also criticizing 
MDA's star and savior, comedian Jerry Lewis. 
Society, Kemp charged, saw disabled people as "childlike, helpless, 
hopeless, nonfunctioning and noncontributing members of society." 
And, he charged, "the Jerry Lewis Muscular Dystrophy Association 
Telethon with its pity approach to fund raising, has contributed to 
these prejudices."
Kemp contended that such prejudices "create vast frustration and 
anger" among disabled Americans, then numbered at 36 million. 
Kemp charged that disabled people suffered far more from lack of 
jobs, housing -- lack of access to society -- than from the diseases 
MDA sought to cure. He accused the Telethon's "pity approach . . . 
with its emphasis on 'poster children' and 'Jerry's Kids' " -- of 
creating prejudice. He called upon the Telethon to reform; to portray 
disabled people "in the light of our very real accomplishments, 
capabilities and rights." The Telethon, he insisted, "must inform the 
public of the great waste of money and human life that comes from 
policies promoting dependence rather than independence."
Kemp took ads in daily Variety, the entertainment newspaper. "Color 
's Useful," they read. They called upon Lewis to reform his telethon. 
The following year, Kemp was invited onto the MDA Telethon. His on-
air pitch was mild: "Your pledge to this Telethon can help create 
meaningful, productive lives for many. It can also help save the lives 
of others. I urge you to phone in your pledge right now." 
After that, Telethon criticism died down. Other telethons -- the 
Easter Seals', United Cerebral Palsy's -- changed somewhat, adding 
more disabled adults and offering more segments on "independent 
living" which those in the disability rights movement had urged. 
MDA briefly hired a disabled man, Steve Lockman, in an effort to 
deflect criticism that they had no one on staff with the disease they 
were seeking to cure. But Lockman stayed on the job only a short 
time, quitting in disgust and accusing MDA of lacking any intention 
of reforming. 
And Jerry Lewis kept on being Jerry.
Perhaps MDA had simply hired a new ghostwriter for the annual pap 
piece that ran each Labor Day weekend in Parade magazine under 
Lewis's byline. But the 1990 one, published in the September 2 issue 
of Parade magazine, took a new twist: "What if the twist of fate 
that we hear so much about really happened? What if, when the gifts 
and the pains were being handed out, I was in the wrong line?" Lewis 
began . "What if I had Muscular Dystrophy?" was its title.
 "I decided after 41 years of battling this curse that attacks 
children of all ages, I would put myself in that chair, that steel 
imprisonment that long has been deemed the dystrophic child's 
plight," he continued. 
"I know the courage it takes to get on the court with other cripples 
and play wheelchair basketball, but I'm not as fortunate as they 
are," Lewis wrote, halfway into the piece. He had so far managed to 
include nearly every term or concept offensive to disability rights 
advocates, and his next sentences would work in the others: "I'd like 
to play basketball like normal, healthy, vital and energetic people. I 
really don't want the substitute. I just can't half-do anything. When I 
sit back and think a little more rationally," he continued, "I realize 
my life is half, so I must learn to do things halfway. I just have to 
learn to try to be good at being half a person."
The article outraged disability rights activists nationwide -- in a 
way little else has. The Rag received countless copies of the article 
for our "We wish we wouldn't see  . . . " pages. In Chicago, Cris 
Matthews and Mike Ervin, a brother and sister who both had forms of 
Muscular Dystrophy and had been MDA poster children in 1961 and 
who had been active in ADAPT actions and had started a group called 
AccessAbility Associates, decided to do something about it. 
 Two  months before the 1991 Telethon, Matthews wrote to Robert 
Ross, Executive Director of the Association, a deceptively simple 
letter. "The wheels are in motion to begin the campaign to remove 
Jerry Lewis from your Telethon," she told him, by way of 
introduction. "We intend to keep at it until he is no longer 
associated with MDA, and the negative, degrading nature of the 
Telethon is changed to reflect the truth about life with muscular 
dystrophy and disability in general."
The Association, she charged, was "expert in exploiting the worst 
side of disability and, with the eager assistance of Lewis, has made 
us out to be nothing more than pathetic burdens to society, whose 
only desire is to walk. Much attention is given to the kids who may 
not live to adulthood, but for those of us who do live on, not one 
word or one dime is devoted to the concept of independence." 
Lewis's Parade article, "full of the condescending paternalism the 
Association foists on the viewing public, is an outrage and an 
insult," she told Ross.
"No one is negating research or the individual's desire to be cured," 
she wrote. What they objected to was the paternalism, "the attitude 
that stresses that, no matter what one does, life is meaningless in a 
wheelchair."
Ervin went further. In an October letter to Ross, he threw down the 
gauntlet. "[Jerry Lewis] is never going to change his stripes. He will 
continue to be a liability to you as long as you keep him around." 
Jerry Lewis must go,  Ervin said; there would be no negotiating the 
point. 
In announcing the kickoff of their fight against MDA, Matthews and 
Ervin, who had dubbed themselves "Jerry's Orphans," listed the 
group's demands: MDA would have to "enter into negotiations with a 
group of consumers with disabilities of our choosing to determine 
how or if the Telethon can be restructured so that it does not 
continue to sabotage the hard work of those in disability rights"; the 
charity would have to stop using "the archaic and degrading word 
'patient' to describe those it serves" and replace it with "something 
more dignified, like 'client' or 'consumer.' "; it would have to 
provide services for its clients' "more immediate needs, including 
advocating for their rights" and it would have to put people with 
disabilities into "meaningful positions of power" within the 
organization. This included putting disability rights advocates onto 
its board. 
"We are not necessarily out to put the Telethon -- or MDA -- out of 
business," he wrote, 'but we are definitely out to put Jerry Lewis 
out of the disability business." 
Whether putting Lewis "out of the disability business" would cause 
the demise of the Telethon or MDA, Ervin told Ross, "is totally up to 
MDA. We wish to avoid it as much as you do, but we will do our 
battle on whatever field you choose.
"As long as you cling to Jerry and your charity-laden fashion of 
depicting the disability struggle, the fight will continue," Ervin 
wrote. 
Though Kemp had fired the first fusillade, now the battle would 
start in earnest. It was a battle that "would continue to grow," 
Ervin warned Ross. "We will challenge you in greater numbers; we 
will protest in your local offices. We will pressure your corporate 
sponsors to pressure you. We will make Jerry Lewis and the pity 
pitch as much a liability for you as he is for the rest of the 
community of disability," Ervin warned. 
"You can choose to doubt our ability to win this fight," Ervin 
continued; " but we have been in bigger fights than this."
Matthews, as it happened, was on the list to receive a motorized 
wheelchair from MDA. That fact would be publicized relentlessly by 
MDA to smear her reputation; Matthews says MDA got information 
from medical records of a Chicago-area physician with neither her 
knowledge or consent.  
The Muscular Dystrophy Association is one of the nation's largest 
charities -- and considered one of the best-run (last December, 
Money magazine cited it as one of the ten best-managed large 
charities in the U.S.). Since its start in 1950, its focus has been on 
medical research, its goal the cure of neuromuscular diseases. 
Criticism of its fundraising tactics by Kemp a decade ago irritated 
the group, but it's safe to say its management has never truly 
understood the reasons for Kemp's criticism. The new critisms also 
took them unawares. 
In Denver, former MDA poster child Laura Hershey organized a 
protest of the 1991 Labor Day Telethon, using the name "Tune Jerry 
Out." Her protests, and those of groups in Los Angeles and Las Vegas, 
garnered national publicity. Hershey was invited onto the nationally 
syndicated Gil Gross radio talk show originating on WOR radio in 
New York City. 
The show aired on September 3. Callers branded Hershey  
"ungrateful" and a dissident."  (See, "Bigotry in the air," 
November/December, 1991). MDA circulated a transcript of the talk 
show and urged that letters be written to Hershey. Hershey says she 
received over 50 hate letters.
"Your entire interview was a bitter, negative slam against MDA and 
the Jerry Lewis Telethon," wrote David A. Sheffield, an assistant 
district attorney from Kountze, Texas who has muscular dystrophy 
and who would later serve on MDA's Task Force on Public Awareness, 
a group set up to counter the demonstrators. Sheffield accused 
Hershey of perpetuating "the false, age-old stereotype of disabled 
people as angry, deeply embittered, negative persons." 
"The MDA has not been founded for the purpose of making you look 
good," wrote Shelley C. Obrand, who signed herself "one of 'Jerry's 
Kids.' It is not Jerry Lewis's or MDA's responsibility to fight for 
disabled rights . . . . You are a selfish, negative person,"she wrote. 
Hershey began dutifully replying to the letters. "My basic objection 
to the telethon is that it encourages us to mourn again and again; 
that it reinforces the message that being disabled is not okay; that 
it implies that disabled people should get what they need through 
charity, not as a matter of right; and that it discourages us as a 
society from accepting disability and seeking to accommodate it 
permanently into our social fabric," she wrote.
"The disability rights approach views disability as a natural 
phenomenon which occurs in every generation, and always will," 
Hershey wrote to her critics. " It recognizes people with disabilities 
as a distinct minority group, subject at times to discrimination and 
segregation . . . but also capable of taking our rightful place in 
society. From this perspective, people with disabilities have rights, 
which society must guarantee . . . the right to health care, full 
integration and opportunities for . . . . non-institutional living. 
Instead of begging, we are expected to participate fully in the 
community."
By this time, the Association had moved on to other methods of 
discrediting protestors.
In October, MDA Director of Research and Patient Services 
Administration, Ronald J. Schenkenberger, put out the word to 
selected people associated with MDA in and around the Chicago area 
that "developments relating to initiatives undertaken by Chicago-
area residents Cris Matthews and Mike Ervin . . . have sufficiently 
hurt our fundraising programs in your area" that the Association 
would have to "regretfully" "enforce a regulation of many years' 
standing" to limit admissions to MDA camps. 
Lest anyone believe this was simply following policy, 
Schenkenberger made it clear that this cutback was all Matthews' 
and Ervin's fault. "Action of the nature undertaken by Cris and Mike 
can only serve to impair our ability to raise funds and thus have a 
negative impact on the Association's ability to provide a full range 
of services." 
 He urged writing to Matthews and Ervin directly, and provided 
addresses. He also pointed out that Matthews "will shortly be the 
recipient of an MDA-purchased power wheelchair costing over 
$8,600."
 MDA disputed Matthews's and Ervin's claims that they themselves 
had been MDA poster children. When columnist Dianne Piastro 
referred to the brother and sister as former MDA poster children,  
she received a swift letter from MDA Director of Field Operations 
Gerald Weinberg insisting that Piastro verify the fact. Other 
letterwriters, both to Piastro and Matthews, disputed the claim 
also. Only when Matthews was able to dig up a February, 1962 
newsletter of the Greater Chicago MDA chapters proclaiming  the 
smiling brother and sister  "muscular dystropy poster children for 
1961," did the questioning stop. 
Even more direct was the attack on Hershey from Mike Gault, MDA's 
Director of Community Services. "This Association has received a 
considerable amount of negative publicity as a result of your Tune 
Jerry Out campaign," he wrote Hershey late last October. "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." 
Gault enclosed a newspaper clipping about Rhondi Geist, "a 38-year-
old Friedreich's ataxia patient [sic]" in a Colorado nursing home who 
had recently been the recipient of a wheelchair from MDA. Gault told 
Hershey that a thank-you note from the man (which Gault also 
enclosed) had "started me wondering how much longer MDA will be 
able to provide the kind of help this young patient received. The 
thought struck me that this is a matter you'd like to think about."
Hershey says she was "shocked by both the content and the tone" of 
Gault's letter. "If your attitude is representative of the Muscular 
Dystrophy Association as a whole," she wrote him, "then I must 
conclude that the Association's problems go much deeper than just 
the offensiveness of the Telethon." Hershey told Gault she thought 
he might be exaggerating the drop in funds to make her feel guilty, 
but said she was even more disturbed by MDA's response to the drop. 
"You seem very willing -- even eager -- to cut client programs. . . Has 
the Association considered administrative salary cuts instead? Or is 
this part of the budget considered sacred?" she asked.  
In 1990, MDA had spent $34.6 million on salaries and benefits; its 
executive Robert Ross received nearly $285,000, making him one of 
the top paid of all the nation's charity executives. 
As to Geist's situation, Hershey wrote to Gault,  "It seems to me 
that MDA has condoned, and even participated in, the widespread 
institutionalization of people with disabilities in this nation. . . . 
MDA, with its medical-model approach, has done little to provide 
independent living services and supports or to free its clients from 
the confinement of nursing homes.
"I do not want my views or actions to punish Rhondi Geist and other 
disabled people," Hershey told Gault, "but the fact is that if Mr. 
Geist were living independently, outside of a nursing home, he would 
most likely be eligible for Medicaid -- which, in Colorado, would 
enable him to obtain not only the high-tech wheelchair he needed, 
but also home health care services and other equipment he required 
to stay independent and healthy."
If Gault intended  his letter to make Hershey back off, it did not 
work.  "Protests against the Jerry Lewis Telethon will continue, and 
probably increase, until the Muscular Dystrophy Association changes 
its approach to fund-raising, as well as its attitudes toward 
clients," she wrote. "As long as MDA's organizational and service 
philosophy values charity over independence, it will continue to be 
in conflict with the goals of equality and empowerment of people 
with disabilities."
If MDA's threats last fall were efforts to instill guilt, by early 1992 
they had become more serious. Matthews began to be harassed by 
MDA officials demanding copies of Jerry's Orphan's nonprofit status 
and tax exemption, evidently  not realizing at first was that Jerry's 
Orphans was merely a name, not an organization. Later, they began 
hassling Matthew's about AccessAbility Associates, which was a 
non-profit corporation -- which Ervin reports they were continuing 
as this story went to press.
A January 14 registered letter from attorney Bruce S. Wolff of the 
law firm McDermott, Will & Embry warned Matthews that MDA had 
hired his firm to "advise the Association on an ongoing basis 
concerning its rights to hold you legally accountable for any 
damages it may incur as a result of your efforts."
"Our firm intends to monitor -- from our offices in Chicago, New 
York, Washington, D.C. Boston, Miami and Los Angeles -- the 
activities in which you . . . may engage in." Any activities "which 
have the effect of disrupting or interfering with, or which are 
intended to disrupt or damage, the Association's relations with 
existing and prospective sponsors and/or Telethon stations will 
provoke a swift and substantial reaction."
"I don't know what they could do to us," Matthews laughed. "We have 
no money; we have nothing to lose."
  Matthews says she thinks MDA targeted Evan Kemp because they 
realized they could win nothing by fighting Jerry's Orphans. Kemp 
was a bigger target; his dismissal from the Bush Administration 
would be a win for MDA. But they lost that gamble, too (see story, 
page 10).
Few reporters have had the interest -- or the guts, maybe -- to take 
on the Muscular Dystrophy Association. One who tried was Dianne 
Piastro, disability columnist of the syndicated "Living with a 
Disability" column. Piastro wrote a six-column series on the issue, 
starting by outlining the protest, giving readers the opportunity to 
contact Matthews and Ervin, and ending with an unflattering look at 
MDA finances.  MDA stonewalled when Piastro sought financial 
information from them. "In light of the obvious bias that so 
extensively characterizes your apparent ongoing assault upon MDA, I 
believe it would be decidedly counter-productive to the interests of 
those served by the Association to participate in any interview with 
you,"  wrote MDA Director of Finance Robert Linder in response to 
Piastro's verbal, then written, questions about expenditures on the 
group's IRS annual tax forms. Piastro finally obtained the forms 
from the Illinois Attorney General; she had to file a complaint with 
the IRS about MDA's refusal to release them. 
Despite their refusal to set the record straight before her article 
ran, MDA seemed outraged when her column hit the papers. They had 
the accounting firm Ernst and Young scrutinize every  financial 
allegation in her column, and used it to send a four-page, typeset 
point-by-point rebuttal to newspapers that had run her column, 
characterizing her facts as "uniformed and misleading," "out of 
context" and "grossly incomplete," which seems particularly unfair 
given MDA's refusal answer questions she sought.
Miami Herald reporter Marjorie Valbrun was contacted by MDA folks 
to do a story on Jerry when he came to Miami. When they learned 
Valbrun had contacted Kemp for his side of the story, MDA's offer of 
an interview with Jerry dried up. Valbrun told MDA she couldn't do a 
story with just one side -- and the story was never done. 
Jerry's Orphans vowed to Ross to "pressure your corporate 
sponsors." ADAPT's Mike Auberger, with the allusion to South Africa 
not unintended, calls it pressure for "a divestment plan." 
The divestment plan is simple: Don't give money on the Telethon. 
That was what Matthews began asking major Telethon contributors 
last year. With ADAPT behind it, the campaign has picked up this 
summer. Protesters targeted United Airlines, Southland Corporation, 
which runs the 7-Eleven convenience stores, Gannett Outdoor 
Advertising, Service Merchandise and TCI, the nation's largest cable 
TV operator.
Protesters did not ask corporations to reduce their contributions to 
MDA. They merely asked that the contributions not be made to the 
Telethon itself, and that contributors not appear at the Labor Day 
event. "This way, the Telethon is neutralized," says Auberger, 
"while MDA's fundraising efforts are unharmed."
ADAPT and others point out that the bulk of money shown as being 
raised during the Telethon is actually raised months before. As 
major corporations' gifts are announced on the Telethon, the amount 
on the tote board rises; but that money has in reality been raised in 
preceding months. The appearances by corporation heads like Service 
Merchandise's Raymond Zimmerman are a form of free advertising 
for the corporate giants, and, in a way, their contributions can be 
seen as advertising fees -- because they believe the good publicity 
generated by appearing on a Telethon for a worthy cause that isn't 
controversial can only help them in the eyes of customers. 
ADAPT's Diane Coleman calls it "advertising at our expense." She 
was among the activists who met with Zimmerman earlier this 
summer to ask him to stay off the Telethon; he refused. Activists 
from Denver reported better results with TCI (See story, page 20.).
As Telethon time rolls around again, MDA's Task Force and Telethon 
officials appear to be making attempts to defuse what they fear may 
be mass protests in Las Vegas, where the Telethon takes place. In 
May, MDA officials traveled to Denver to meet with ADAPT; in July, 
members of the Task Force tried to arrange a meeting with ADAPT 
activists in Texas in an effort ADAPT says they characterized as 
"building bridges." 
ADAPT's Bob Kafka said a Task Force member had called him to try 
to set up a meeting with Regional MDA folks; the conversation, with 
a man Kafka had known in disability circles years ago, he said, 
brought home to him why he had always been "anti-MDA."
It was two things, he said: "The Jerry's Kids image -- that's 
paternalism -- and their "patient services" approach -- that's the 
medical model. 
"Those are the two things the Muscular Dystrophy Association has 
interjected into Americana," he continued. "They are the two things 
which are the antithesis of what we stand for."
Though MDA tries to convince the public that its detractors are 
simply jealous of the fundraising group's success, says Kafka, 
activists' real anger, he thinks, is at the group's success in 
projecting images into mainstream America -- images activists hate.
Lewis told the Los Angeles Times's Charles Champlin in 1990 that 
his telethon pulled in 120 million viewers, a figure he claims is just 
below the Super Bowl and the Miss America Pageant in audience size. 
It's precisely because they have such an impact on public perception, 
says Kafka, that the MDA is the target of activist criticism.  "MDA is 
Americana," says Kafka. Because they have made such a pervasive 
image, he says, "they have a higher responsibility to project an 
image of disability that is real."               
 
'Spare us your nonsense'
In his letter to MDA's Robert Ross announcing plans for the 
Jerry's Orphans effort against them, Mike Ervin accused 
MDA of "pandering to the most Neanderthal myths about 
disability because, presumably, you think this is the best 
way to raise money. 
"You choose to reinforce in the public that life with a 
disability is hell. You reassure them that the only way out 
of disability hell is to be cured . . . " Ervin continued -- as 
if, he added, the solution to being black were to become 
white; or the solution to being a woman were to become a 
man. As a result of MDA's approach, Ervin wrote, society 
sees its only responsibility toward disabled people as 
being "funding a cure." 
"People who must live with a disability continue to be 
ignored, with Jerry's sanction," he wrote. 
Ervin told Ross that they were mounting this battle "in 
memory of our loved ones with muscular dystrophy, both 
living and dead.
"You can continue to believe, if you want to, that we are 
people who don't understand the realities of muscular 
dystrophy," he wrote; but, he pointed out, he himself had 
muscular dystrophy. "So did my brother. So does my sister, 
my wife and several of our closest friends.
"One of my best friends died in our living room," he 
lectured; "so spare us your nonsense about how heartless 
we are. We do this in all their names. You dismiss their 
lives as tragic; you insult their memory. If we suffer in 
our lives," he said, "it's because of the bigotry we're dealt 
by people who think we should go away and not bother them 
until we're cured. "
But, Ervin finished, the battle was being waged "most of 
all" for people who had disabilities other than muscular 
dystrophy. Those people got nothing from MDA's telethon 
except "fallout," he said. "They have to endure all the 
discrimination, all the passionate disregard, all the 
worthless pity -- and they derive not one ounce of benefit. 
"For them your Telethon is nothing but an abomination," 
Ervin ended his scathing letter, "and you have no right to 
serve your ends at their expense."
articleends: 
articlebegins: Target: Evan Kemp.
In the July  issue of the Washingtonian magazine, Evan J. Kemp, Jr., 
Chairman of the U. S. Equal Employment Opportunity Commission, 
took his latest swings at MDA Telethon chairman Jerry Lewis. He 
told reporter Ken Adelman that in Lewis's telethon "we're portrayed 
as children or as people who are so sickly that we're about to die."
"This contributes to attitudinal barriers," Kemp continued, "which 
are the biggest barriers to the integration of any group." Lewis, said 
Kemp, "talks about disabled people as if we're children, unable to 
have adult views." 
Though Lewis's effort to have President Bush oust Kemp as Chair of 
the EEOC (See The May/June Rag) failed -- Kemp was renominated by 
the White House in June, though Senate confirmation will be delayed 
until after the election -- Kemp told Adelman that White House chief 
of staff Samuel Skinner ignored Kemp's request to be allowed to 
look over the White House's response to Lewis. "It makes me think 
that they didn't call me because I'm disabled. That they think 
disabled people are children."  Kemp said the White House response 
to Lewis "left the impression that the President thinks the telethon 
is a good idea." Indeed. On Feb. 24, Skinner wrote to Lewis that "The 
Bush Administration supports your work." 
For over a decade, Kemp has been accusing Lewis and the MDA of 
foisting on the public the view that disabled people are children. In 
his opinion, little has changed since then, and Skinner's treatment of 
him is proof.
Though Kemp has been fighting the MDA telethon for11 years, he 
continues to hold the moderate, reformist view. He has said 
repeatedly that he is not campaigning to end the MDA telethon. "I 
hope to convince Jerry Lewis and the MDA . . . that they can join the 
disability rights movement at no risk to their fund-raising," he 
wrote in May. "Indeed, if they do so, they will probably raise more 
money for the worthy causes we all support. Americans are not going 
to stop giving [money] when they learn that their donations are going 
to people who, like everyone else, resent being treated as objects of 
pity, who have the same desires as everyone else to lead 
independent, responsible lives, and who desire to minimize their 
dependency as much as possible," he wrote. In Kemp's opinion, Easter 
Seals and United Cerebral Palsy, two other charities targeted for 
disabled people who hold telethons, have accomplished this -- though 
other telethon critics would  disagree. 
In late March, Kemp put the issue succinctly: "I think the real fight 
here is between the civil rights approach to disability and the 
medical model approach."
The MDA campaign to oust Kemp has had the unintended effect of 
making a champion out of a man who the disability community was 
not heretofore totally behind, since he was part of a Republican 
administration some distrusted. Before Lewis's attacks, some 
activists felt Kemp wasn't as strong a rights supporter as he could 
have been, and accused him of approving weak EEOC rules to 
implement the ADA; but his consistent rebuttal of Lewis's approach 
has won him the hearts of the most hardened activists. 
Ousting Kemp has been MDA's major thrust against protesters since 
last fall. When Accent on Living, the Readers Digest of disability 
publications, ran a poll in its Fall, 1991 issue asking readers 
whether they were "For or Against Jerry," MDA officials encouraged 
members to write; Matthews charged them with skewing the results. 
When the Winter issue appeared, and Accent reported that many 
respondents liked Jerry, MDA's PR department rushed out a press 
release, crowing to the media that "Disability magazine poll 
overwhelmingly supports Jerry Lewis."
In early 1991, MDA organized a "Task Force on Disability Issues" 
that appeared to exist primarily for the purpose of fomenting 
opposition to Kemp. In February, the group, which decided it wanted 
to change its name to "The Task Force on Public Awareness" "to 
reflect broader-based responsibilities," sent a letter to President 
Bush to "protest the anti-MDA activities" of Kemp, and criticized 
"Kemp's damaging and biased statements about MDA, its Telethon 
and its national chairman, Jerry Lewis." In April the group wrote to 
members of the Senate opposing Kemp's re-appointment. 
MDA also mounted a campaign to get independent living centers 
against Kemp and monitored communication between centers, at one 
point sending a letter from its attorneys to the director of the 
Endependence Center of Northern Virginia threatening to "pursue all 
legal avenues" against ECNV and its director, Sharon Mistler, if she 
didn't "retract" an action alert regarding MDA's efforts against 
Kemp that it called inaccurate.  
 Some centers which received MDA's anti-Kemp material were not 
pleased. "We are appalled and ashamed to find that some people 
involved in independent living are associating themselves with your 
campaign of vilification," wrote Maria Dibble of the Southern Tier 
Independence Center in Binghampton, N.Y. to MDA's Mike Gault, who 
had sent out the materials. "We wholeheartedly support Kemp in his 
statements about MDA and its telethon and in his efforts to bring 
about public awareness of the larger issue, which is the insistence . 
. . on using fundraising methods unacceptable to the disability 
community." Dibble went on to criticize MDA for refusing to put 
disabled people in policy making positions within the organization, 
and for "diverting the bulk of a generous and unsophisticated 
public's charity dollars to activities which are not needed or 
supported by the disability community and which are in many cases 
harmful to that community's oft-expressed interests." 
Independent Living Centers have been the hapless recipients of a 
barrage of propaganda from Muscular Dystrophy Association 
officials, local chapters and members of its Task Force on Public 
Awareness, a blizzard of paper urging centers to denounce anti-
Telethon activity at every turn. In May, centers got a letter from 
Task Force member David Sheffield whining about an editorial in the 
March, 1992 issue of Mainstream magazine blasting Lewis's 
attempts to tar Kemp. 
Deborah A. Jakabcic, whom MDA contacted to be on its Task Force, 
was insulted. "I take exception to MDA's references to being part of 
a 'fringe group' or being a 'disability rights radical' simply because I 
question their position," Jakabcic, the 1985 Miss Wheelchair Ohio, 
wrote Kemp. MDA's effort to stir up disabled people against Kemp 
backfired when Jakabcic and others who MDA had contacted instead 
wrote to Bush supporting Kemp. 
MDA chapters urged members to send anti-Kemp letters to the White 
House; Chicago Cook County Chapter President James R. Tillman even 
enclosed a sample letter for members: "How can we have a United 
States Government Chairman continually try to destroy our 
Telethon?" he raged for them. 
"Between now and the Telethon, I look to a long hard fight to keep 
MDA's image unblemished," Tillman told his members. "It is up to us 
all to do what has to be done to preserve MDA's integrity in the 
public eye, and to make sure MDA's ability to successfully fundraise 
will not be impeded." 
Because of the activities of Jerry's Orphans and Hershey's "Tune 
Jerry Out" campaigns, MDA was primed and looking for a target when 
Kemp had obliged them early last fall by mentioning his problems 
with the Telethon in a press release sent out in connection with a 
fundraiser for former attorney general Richard Thornburgh, then 
running for the Senate. Lewis, in a swift letter to Kemp, called it "a 
reversion to the sort of tactics you used a decade or so ago in 
making a name for yourself in disability rights circles. 
"I'm tired of hearing our effort characterized by those comfortably 
free from threat of premature death as a pity for 'Jerry's Kids.' If 
you think you've a better plan for doing our job than the one we've 
developed, I'd like to hear about it," Lewis almost sneered when he 
wrote to Kemp on Oct 30, 1991.
It would be nearly three months before Kemp would respond to 
Lewis; in that time, MDA had started its highly public effort to get 
Kemp ousted from his job, had harassed Piastro and Hershey and sent 
threatening legal letters to Matthews.
"If you really believe," Kemp wrote him, "that those of us . . . who 
object to the Telethon's portrayal . . . are just a few misguided 
souls, then ignore us. A fringe group won't hurt your efforts."  Kemp 
told Lewis that he suspected, however, that the issue was deeper; 
that "someone at MDA must understand the contradiction" now 
occurring in society between the passage of the ADA and the "anti-
mainstreaming approach taken by you." 
A few days later, Lewis responded to Kemp, ignoring the substance 
of Kemp's letter, reiterating only that he was concerned with Kemp 
"compromising the dignity of high public office."
That theme -- that Kemp as director of EEOC had no right to speak 
against the Telethon -- would be reiterated in MDA's campaign to 
oust him. It was a theme that ultimately backfired. The 
Administration did re-appoint Kemp; and many disabled people and 
disability groups echoed the comment of Maria Dibble of the 
Southern Tier Independence Center that "Evan Kemp is perfectly 
within his rights as the highest-ranking person with a disability in 
the federal government to use his position to exercise leadership on 
behalf of the disability community."
Kemp says that he sees it as "my duty as chairman of the EEOC to 
speak out against attitudes that threaten to undermine the 
philosophy and goals of the civil rights laws it is the Commission's 
duty to enforce." articleends: 
 
 
 

Newsgroups: misc.activism.progressive