NetNews Usenet Archive 1992 #31/NN_1992_31.iso/spool/misc/activism/progress/9747

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Subject: 09/92 - The Disability Rag (2/6)
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/* Written  9:00 pm  Jan  2, 1993 by [e-mail] 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: