NetNews Usenet Archive 1992 #31/NN_1992_31.iso/spool/misc/activism/progress/9749

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Subject: 09/92 - The Disability Rag (4/6)
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/* Written  9:01 pm  Jan  2, 1993 by [e-mail] in igc:gen.diffable */
/* ---------- "09/92 - The Disability Rag" ---------- */

I Was A Poster Child
    I was a poster child. In 1973, I became a mini-celebrity,
appearing at Muscular Dystrophy fundraisers throughout Colorado. I
learned to smile whenever a camera appeared, and to say "thank
you." I learned to look, sound, and act cute and grateful. And on Labor
Day, I became a prop in the TV studio where the local portion of the
Telethon was broadcast. To families, driving by to drop their
contributions into a giant fishbowl outside the studio; to the
camera's blinking red light; to the anchorman who squatted next to
me, holding a huge microphone in my face; to everyone, I gave the
same cute-and-grateful act, because that's what they wanted.
    So I am no stranger to the Telethon. And in the 18 years since
then, the Telethon doesn't seem to have changed much. I watched it
for three or four hours last year, just to make sure. It was chillingly
familiar. The sappy music, the camera close-ups of wistful faces,
the voice-overs telling us about that person's dream to walk
someday, the tearful stories of parents "devastated" by their child's
disability, and the contributors coming forward in droves -- it was
all the same as I'd remembered it.
    But some things have changed. I have changed. I don't know
what my politics were as an 11-year-old, if I had any. But my
politics now -- which are not merely political but also personal,
spiritual and practical -- have led me to question and ultimately
reject most of the values which the Telethon represents. articleends
    sidebarbegins Waiting for a miracle
    The telethon, says Laura Hershey, distorts reality -- even in its
profiles of disabled adults, which MDA always mentions as being
"positive."

    Just before my second year of college, I was asked to be
interviewed for a pre-Telethon special. At first I said no; I was by
now quite leery of the telethon mentality . . . . but the local MDA
office promised the interview would . . . take a positive, realistic
approach, so I agreed.
    The reporter who conducted the interview in my parents' home
asked good questions, and allowed me to give complete, intelligent
answers. It was certainly a different process than my earlier
experiences. Afterward, I felt good about the upcoming show; I had
been able to discuss issues, describe my life as a college student,
and project a strong, positive personality.
    Or so I thought. When the program aired, my piece, through
careful editing, had been turned into a sob story entitled, "Waiting
for A Miracle." From that point on, I vowed to have nothing to do
with the Telethon.  -- L. H. sidebarends
    articlebegins A Larger TargetThe letters back and forth
between disabled people show the amount of oppression  the
movement has yet to overcome. Sometimes it is hard to believe that
the letters are written by people who themselves have disabilities.
They are full of myths and prejudices that oppress disabled people.
The telethon issue is the one issue that shows clearly the internal
prejudices many of America's disabled people carry inside them.  To
examine the controversy in depth, we must listen to what disabled
people say.
    "To . . . accuse a Telethon of creating prejudices that prevent
the disabled from mainstreaming is ludicrous. I have worked for over
10 years . . . never being denied work or ever feeling pitied." MD Task
Force member Lori Hinderer was writing to EEOC Chair Evan Kemp,
letting him know she disapproved of his speaking out against the
Telethon. Kemp was often hit by those, like Hinderer, really aiming
at a larger target.
    Kemp, who also has a neuromuscular disease, was told by
Hinderer that she had had muscular dystrophy for 30 years, and that,
unlike losing a limb or having cerebral palsy, muscular dystrophy
was progressive. "This disease literally takes away every muscle in
one's body," she wrote. "I, and many thousands," she continued,
"want a cure to be found."
    In Hinderer's view, the Telethon exposed people "to the reality
of having muscular dystrophy. The public's interpretation, she added,
was their own; MDA was merely telling the truth.
    "To show people with muscular dystrophy leading totally
wonderful lives, with forever smiles on their faces, and no
limitations [creates] no need in the public's eye to support our
cause."
    %J%J%J
    When ADAPT organizers met with Service Merchandise
officials and local telethon officials in Nashville, Tennessee in June,
"the focus of the conversation was mostly whether the Telethon, as
it's currently operated, is or is not a negative portrayal of disabled
people," said Diane Coleman, who was there. "It was very difficult
to get past this basic, basic issue."
    "We, of course, feel that it presents very negative
stereotypes, and does more harm than good. Even if it does provide
money for people that they otherwise cannot  get, it is not
acceptable to have to sell your dignity for a pair of braces and a
wheelchair." For disabled people who don't have the neuromuscular
conditions MDA is set up to help "but who share the fallout of the
Telethon," said Coleman, "it has no value whatsoever -- it's only
negative. "
    The Rev. David Whited, a Nashville member of MDA's Task Force
on Public Awareness who refers to himself as one of "Jerry's Kids,"
also attended the Service Merchandise meeting. He told The Rag that
he thought the Telethon told "a story of great courage" and that it
was "the greatest educational tool" disabled people had.
    "It breaks my heart to hear a fellow severely disabled person
who has so internalized their oppression that they can make a
comment like that," Coleman said.
    "It grieves me to see the disabled community so fragmented,"
said Whited. "I pointed out to Diane that we could not be farther
apart in our opinions of Jerry Lewis and the Telethon."
    The Telethon controversy, if it has done nothing else, has
forced disabled people to confront their own perceptions of
disability. Like other oppressed groups, disabled people are
discovering that their own worst enemies are often themselves.
    To Hinderer, Kemp and the Telethon protesters were merely the
latest wave of people who liked to see themselves as victim's of
society's prejudice. Mike Ervin, Cris Matthews, Dianne Piastro and
Kemp were all "bitter," she felt.  "By blaming all your defeats and
attitudes on Jerry and the Telethon, you don't have to take any
responsibility."
    What, she asked, was the alternative to raising funds for a
cure? "Don't dare assume the government could come close to
offering us what we already have [through MDA]," she lectured Kemp.
"If a cure were found tomorrow, would you stay the way you are, or
take advantage of the cure that was found because of money raised
by the telethon?"
    While increasing numbers of disabled people have sought a life
in the here and now, pushing for access and civil rights, and finding
even a pride in their status as disabled outsiders, cure has remained
a grail for many others -- perhaps a majority.
    Parents often pursue the grail long after their disabled
offspring's hope has moved to other things. Attorney John R.
Sorensen of San Diego, writing on his son Erik's 17th birthday, told
disability columnist Dianne Piastro  that "Erik's reaction to your
malicious attacks was one of chilling fear. Not a fear of the disease
that is steadily killing him and robbing him of all dignity, but
instead a fear to the core of you and what your misdirected columns
might do to his only thread of hope. He has depended on Jerry Lewis .
. . "
    Jerry's Telethon supporters dispute the contention that rights
are more important than cure. They insist that people suffer horribly
from MD and really want cure, and suggest that when you're this
horribly disabled, rights are almost beside the point. They believe
the Telethon is realistic in its portrayal. If people feel pity as a
result, that's not the Telethon's fault, they argue. More often,
though, they argue that what's felt isn't pity but compassion
    They are convinced the Telethon must portray things as it does
in order to raise money. They believe that tinkering with the
Telethon format would only cause a drop in contributions.
    They repeat, almost as a mantra, that cure is just around the
corner -- though they seem to have believed this all along; and they
see Lewis as spigot to keeping the money flowing; as a saviour, their
only and best hope for cure.
    Writing to a newspaper columnist who had defended Telethon
protesters, Todd Nason wrote, "Thank God for Jerry Lewis. This man
gives and gives and gives. I owe my life to Jerry Lewis. Because of
research grants from money Jerry raised, I am here today -- because
Jerry Lewis begged people to listen and help me."
    Nason, like most pro-telethon disabled people, sees nothing
wrong with the words activists abhor. "What is wrong with words
like 'victim,' 'patient,' 'tragic' and 'afflicted?'" he asks. "Is it that
so-called 'experts' and people like former poster child and current
protester Mike Ervin feel so insecure that they are threatened by
words? If you had a neuromuscular disease, would you not be
'afflicted' with it? Would you not feel like a 'victim.' . . . Wouldn't it
be 'tragic' for you if someone said you would be dead in two years or
less?"
    Dr. Leon I. Charash, volunteer chair of MDA's Medical Advisory
Committee, insisted, like Hinderer, that the Telethon is merely
telling the truth. It "offers a balanced, realistic and honest cross-
section of the impact of neuromuscular disease," he wrote to Kemp.
    When Charash reads Jerry's infamous 1990 Parade article, he
finds nothing more than "a physically sound, athletic man
compassionately imagin[ing] himself confined in a wheelchair.
    "Most non-handicapped ambulatory persons probably would
respond to the concept of disability in a very similar fashion," he
continues. "The message underscores, if anything, the admiration
those of us have for the courage, the determination and dignity with
which persons in wheelchairs face life."
    MDA's progress toward cure (" Explosive advances in molecular
genetics are miraculously closing in on cures for all three
diseases," Charash wrote; "more progress has been made in the last
five years than in the centuries that preceded it") "would not have
been possible" without Jerry Lewis. "He, and he alone, has led the
battle." articleends
    articlebegins Is it compassion? Or Pity?
    The Muscular Dystrophy Association, in a press release last
February, said that Jerry's Orphans "confuse compassion with pity."
    Few people agree that pity is good. The argument is whether
the Telethon uses it. Adherents, including many disabled people like
those on MDA's Task Force, deny that pity is involved. They say it's
"compassion."
    The broader issue of whether the Telethon is "positive" or
"negative" really hinges on this point: is it compassion, or pity? As
Diane Coleman noted about a meeting between pro- and anti-
telethoners, "It was very difficult to get past this basic, basic
issue."
    Last May, MDA Task Force member David Sheffield insisted in a
letter to independent living centers that "far from being a Tpity
party,' the Telethon has raised the consciousness of the American
public with regard to the abilities of disabled people."
     "Ten years ago [when Kemp's protest began], disabled people
had grown so used to the idea that they were to be pitied for their
miserable lives that they saw nothing wrong with being portrayed in
such humiliating light on national TV," wrote Handicapped Coloradan
editor Tom Schantz last spring.  Schantz says that's changing. If it
is, pro- MDA'ers are stuck in a time warp. unfortunately, they have
lots of company.
    Evan Kemp has long accused MDA of hosting a "pity party."
"The pity approach has no place in our society, " he says.
    In a January 31, 1992 letter, Leon I. Charash, Chair of MDA's
Medical Advisory Committee, told Kemp he agreed with him "that we
should not ask for pity for those served by MDA.  "To my knowledge,
we never have," Charash rebuked him. "We have asked for
understanding, concern, and, if people are so moved, compassion."
    "Pity and compassion are close, but there's a distinction,"
Kemp said to Washingtonian reporter Ken Adelman in May.
    "The MDA certainly does use pity to raise money," counters
Maria Dibble of the Southern Tier Independence Center, in a letter to
MDA's Mike Gault in April. "In doing so it perpetuates . . . harmful
public perceptions, viewing people with disabilities as generally
incapable . . . , as people who are sick and whose primary needs are
medical         . . . and as children."
    "Kemp is dead right," wrote Mainstream magazine's William G.
Stothers in an editorial last March. "This telethon pulls out all the
stops on the pity party . . . . Lewis's attitude and words, and those of
his guests, sappy and teary-eyed, shape the behavior of that little
old lady, the middle-aged cowboy and the rest of them who pat you
and me on the head throughout the year."
    "Pity is the name of the game in Telethonland. Pity brings in
big bucks," says Laura Hershey.
    "Pity is a complex and deceptive emotion," she continues. "It
pretends to care, to have an interest in another human being. It
seems to want to take away pain and suffering. But if you look at
pity up close, you notice that it also wants to distance itself from
its object. A woman calls in a pledge and boasts, "My two children
are perfectly healthy, thank God!" Pity does not share another's
reality, only remark on it."
    Sharon Whitlock is one of those people who think pity is
appropriate, even good. She told Rockford (Ill.) Register-Star readers
she pitied her mother (whom she described as "a twisted gargoyle
because of rheumatoid arthritis"). It made sense to her that her 5-
year-old daughter "refused to enter the house to see her
grandmother because she was afraid of her.
    "Pity my mother? You bet I do! I pity anyone who is disabled,"
wrote Whitlock. "What kind of inhuman creature would not feel pity
for a fellow human being denied the blessing of good health?"
    Pity "leads to compassion and compassion leads to action" --
the action of giving to the Telethon, she said.
    "The message telethoned directly and powerfully into the
heart of America every Labor Day is this: Disability is dreadful.
Disability is a cruel, horrible, despicable fate imposed on children
and adults. Disability erodes humanity and makes victims inferior
beings deserving pity and protection, but not deserving of dignity,
equality and respect," wrote Stothers. "That may not be the message
Jerry wants to send, but that's the message people get."
    "Pity can be very hostile to achievement of equality and
respect," Hershey says. "If you feel sorry for someone, you might
pledge a donation, but you are not likely to offer them a good job, or
approve of them dating your sister or brother. If emotions were to be
grouped into families, pity has some rather unsavory kin. On the
emotional family tree, pity is very close to -- sometimes
indistinguishable from -- contempt and fear, which are
uncomfortably near to hatred." aarticleends
    sidebarbegins  'It discourages us from accepting disability'
    from Laura Hershey's letter to Shelley Obrand:

    "I am not suggesting that we engage in denial. Our limitations
are real, our losses are real, and these must be mourned. But we
cannot afford to be stuck in this mourning period.
    Those of us who lose the ability to dress or feed ourselves may
indeed grieve that loss for a time. But the Telethon would have us
and everyone believe that the loss inevitably makes us dependent.  I
know -- as I'm sure you know -- that with reliable, high-quality
attendant services, we can live independently, and have control over
our own lives, no matter how severe our disability may be.
unfortunately, most people don't know that -- with the result that
too many people end up in nursing homes or dependent forever on
overworked family members. Society as a whole remains complacent
about this imprisonment of the disabled, believing that until a cure
is found, no other future is possible for such individuals.
    Instead of perpetually mourning "the devastation of
neuromuscular disease," as you put it, I would like to see the
disabled community demand that society provide what we need in
order to live with our disabilities.  Rather than regret the
unchangeable fact that we can't wash or dress ourselves, why not
join in pressuring our government to provide funding for someone to
do such tasks for us -- and for others who are now confined to
nursing homes because no such services are available?
    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."  -- L. H.
siebarends
    sidebarbegins
     'Our difference gave us strength'
    From a recent letter to Jerry's Orphans from organizers Mike
Ervin and Cris Matthews

    "We have borne the brunt of Lewis's pity in our lives as we
struggle to live outside of institutions, as we struggle to find
employment, as we struggle to develop meaningful relationships. . . .
We resisted and defied the gloom and despair others insisted on
handing us. We proved that life was much more than looking or
moving like everyone else. Our difference gave us strength. It bound
us together and gave us a sense of purposefulness and humor that
only a few outsiders understand.
    It is for these people we fight. We will not have the memories
of those we love reduced to nothing more than wasted children of an
unwanted foster father. We will not stand for another child with MD
or any other disability -- think that there is no hope without a cure.
We will fight until we end the paternalism that gives someone like
Jerry Lewis the arrogance to decide the condition of our lives and
remand us to perpetual babyhood.sidebarends
    articlebegins  Time To Grow Up by Julie Shaw Cole and Mary
Johnson
    The line protesters use so frequently -- "Jerry, we're not kids
anymore!" is truer than intended. When protesters use it, they're
generally thinking of chronological age: they're adults. But where
it's really truest is in a psychological sense. It pertains not just to
disabled people but to the disability rights movement. To a
psychologist looking at this issue, it's clear why the telethon issue
was destined to be the next "burning" issue that would command the
soul of the community that fought successfully to pass a major civil
rights law.
    During the 1980's, activists in disability rights grew tired of
serving as the collective recipient of society's negative projections.
The activism was a sign of our collective growing up; the
accomplishments of that activism -- from lifts on buses to passage
of the Americans with Disabilities Act -- hastened the change in self
image that had begun in us because of the activist actions we were
taking. Pride and self-awareness were growing. We were growing up,
not just chronologically, but psychologically. We have been maturing
as a movement. And today, as a result of that activism, many
disability activists are different psychologically than we were just
a decade ago. We are less likely now to incorporate those
projections; we are less likely to accept the identities others wish
to thrust upon us.
    A major psychological shift like this in a culture shakes
everyone up. This is even more true when it occurs with no fanfare;
no warning. As with most changes occurring within disabled people,
like  major changes that have happened to society as a result of
disability rights activism, it's taken society unawares. No
newspaper articles chronicle it. No reporter outside the movement
has yet honed in on what's really behind these Jerry's Orphans and
Tune Jerry Out protests that grow each Labor Day, in little pockets
all across the country --much less figured it for the important
sociological passage it portends.
    But what's happening is that a sector of the "downtrodden" in
society -- disabled people -- is throwing off society's own
projection. And the projection they're throwing off is one society
very desperately wants to remain on disabled people.
    Whenever a projection is discarded, there's great resistance.
Anyone who's been in therapy knows this. Here the psychology of an
entire nation is undergoing change. Resistance is fierce. Whenever a
set of society's "Others" makes a movement to move out from under
society's projection, it stirs up all kinds of energy as the culture
looks around for some other group they can foist their projections
onto -- and they highly resent those who refuse to serve that role any
longer. They're also angry at having to cope with the strengths of the
newly-emerged group they've wanted to ignore -- in this case, people
with disabilities.
    A great change is occurring in the relationship between
disabled and non-disabled people; one neither of them fully
understands the reasons for; one that many are afraid of, one that
many are fighting hard to resist.
    When such psychological upheavals occur, either in an
individual or in a society, there's an effort to keep the old roles.
This happens in individual therapy: old ways are comfortable, and
people resist growth when it comes, for it's painful. When a society
is undergoing similar change, both the society doing the projecting,
and the people serving as that projection, will often fight to retain
the old roles, because, tired as they are, the old roles are familiar.
Yet others will at the same time be struggling mightily to cast off
the projection. Thus we have disabled people fighting against the
telethon, wanting to cast off that projection, locked in battle with
disabled people who are afraid of the new and more comfortable in
the old roles. Nondisabled people line up on either side of the battle,
too -- and the result is confusing to participants and observers alike.
    Many disability charities hold telethons; yet Jerry Lewis's
telethon has always been the target of disabled peoples' ire. Why
his, and not the others? It's the same reason MDA is the most
successful of all the telethons: focus.
    MDA has either been savvy or has simply stumbled onto the
truth: a hero, one larger-than-life individual, draws people like no
mere cause ever does. MDA latched onto this hero in Jerry Lewis. No
other telethon has had such a larger-than-life hero.
    Lewis has served MDA well because of his great ego; but MDA
has helped Lewis, too: it gave him an image, a persona, greater than
anything he could have ever attained as a comedian. In a way, MDA
saved Lewis -- something that becomes clear from a look at
published accounts of Lewis's life (see page 21.).
    The image Lewis would assume is an image that forms a deep
and powerful myth: "hero to children." It's an archetype of enormous
psychological energy, as anyone who's read any of Joseph Campbell's
work on myth will know.
    Batman, Superman and Captain America are all children's
heroes. They all use their superhuman powers to right wrongs done
to the powerless. This hero archetype gives children a way to
fantasize about their own strengths, even as seemingly powerless
children. It gives them a guide to use in completing their own hero
journey which is a part of all growing up. (Readers may want to read
Joseph Campbell on hero journeys).
    But the hero image is one of limited staying power. When
children grow up, they no longer need such heroes; the hero has
served his purpose for them.
    MDA, in creating a hero for disabled children in Jerry Lewis, in
a way poised itself for the problem it's now facing.
    It exacerbated it, too, by attempting to cut off the process
such a hero serves in myth: though it gave disabled children a hero,
the Association evidently did not understand that in such myths,
children in the end always complete their own hero journeys. Despite
MDA's attempt to stop the myth in midstream, it has, as myths do,
followed its own course, and the disabled children did grow up
Passage of the ADA made disabled people their own heroes.
    Whether MDA has intended it or not, its refusal to dismiss
Lewis has had the effect of appearing to be an attempt to thwart the
psychological growing up of an entire generation of disabled people.
It is this that Jerry's Orphans perceive so acutely on a gut level.  By
insisting that Jerry be always there to intercede eternally for his
"Kids," MDA truncates the process of development that all people
seek in growing up. By refusing to let Jerry go, MDA is in a sense
commanding that growth not occur.
    This is dangerous, on two fronts: What will happen when
there's no longer a Jerry (for we all pass on, sooner or later). And
what happens when kids grow up and no longer need a hero?
    The second question is the one we're being forced to examine
in the wake of Jerry's Orphans protests. The question is all the more
shocking because it's taken society unawares.
    Despite civil rights advances and "public awareness"
campaigns that have made the point over and over, society has
simply not, on any deep level, taken in and digested the truth that
disabled people might be anything other than infantile, immature
beings -- "kids". Society really does view all disabled people as kind
of perpetual children -- still, despite laws, despite all the talk,
despite all the "awareness." Evan Kemp perceives this; all telethon
protesters do.
    Telethons did not create the image of the disabled person as
perpetual child; it's been society's view of disabled people for as
long as anyone can remember -- and it's powerful. The Telethon's
creators merely observed (probably unconsciously) what role it
could play in raising money, appropriated it, honed it, focused it, and
burned the image ever deeper into our national consciousness.
    Only in the last decade has this image been questioned. Even
now, it's questioned by relatively few people. The stigma of being
the perpetual child is one that even many disabled people, though
they deny it, still accept. It is society's negative projection that
they are accepting.
    Vulnerability, lack of capability, immature abilities -- these
are traits that we, as a society, want to deny in ourselves -- that we
seek to project onto others. Who better to project them onto than
disabled people? And that's what society's been doing. It's a lot
easier to project one's vulnerability onto someone else -- a disabled
person -- than to have to face it personally.
    For many disabled people, too, it has been easier to accept this
negative projection of society, and live with it, than to throw it off
and find one's own internal, neglected personal power. Yet that's
what activists have begun to do. They have at last begun to claim
their own power. This has energized them like nothing else. They are
casting off society's negative projection. And they are seeking to
stop it at its source.
    Giving to Jerry's Kids allows a non-disabled person to fend off
her own fears of vulnerability, powerlessness and mortality. Being a
Jerry's Kid allows a disabled person to avoid facing one's own
strengths and power.
    Looking at the situation through yet another myth, we can see
that MDA has set Lewis up as a king. (Sir James Fraser wrote about
this in his classic book, The Golden Bough). And it is no exaggeration
to say that Jerry's kids, grown up now, are out to symbolically kill
off that king. Consider the cultural phenomenon of a society killing
off its king when he no longer historically suits the needs of the
people. You see it at work here also.
    MDA can continue to insist that this is all the fault of
protesters; that if they'd just go away and leave well enough alone,
things could return to normal. But MDA would only be fooling itself
with this delusion. It's precisely because they set Lewis up as hero
and king that this is now occurring. It's a developmental process
that was bound to occur as disabled people grew up psychologically
-- the only way it could have kept from happening would have been if
disabled people had remained eternal children. For people who truly
believed that's what disabled people were, the current events are no
doubt shocking and inexplicable. To those who knew that disabled
people would claim their power, it was an inevitable next stage.
     It is due in large part to the disability rights movement that
many disabled people have experienced the psychological growth
that now threatens MDA's status quo. That, perhaps, explains the
source of MDA's very real frustration, confusion and rage: they
honestly don't comprehend that disabled adults are no longer
children psychologically -- and though they suspect that disability
rights has something to do with it, they don't understand precisely
what that is.
    But quite apart from protesters, MDA has created its own
problems by putting all its eggs into the Jerry Lewis basket. For
what will happen to MDA when Lewis dies? By setting him up as the
sole symbol of why people give to MDA, the organization has not only
put him in a personally difficult position, but has endangered the
organization's future potential for support.
    Protesters who fight for Lewis to leave are in a way doing MDA
a service. They are forcing the organization to confront the problems
reliance on one larger-than-life individual can create. MDA would be
wise -- and would do Lewis a big favor -- by working to move its
fundraising focus away from him and toward the issue of a just
society; toward making life good for disabled people while it
continues to seek cures and treatments for neuromuscular diseases.
This is precisely what the movement is urging MDA to do. The
Association would be wise to listen. articleends
    articlebegins The Rest of Us
    According to Carl Jung, we all carry neglected psychological
parts of ourselves in our unconscious -- parts that we don't wish to
acknowledge. Our unconscious mind "projects" these negative parts
of our personality out onto others -- so that we see in others the
traits we refuse to acknowledge in ourselves. We tend to negate and
damn these internal elements and to project them out onto other
individuals or groups, which we can then safely condemn because
they are "not like us." In fact, Jung would say, that's precisely the
point: they are like us. Subconsciously, we know this: we become
intent on denying it precisely because we are so determined to keep
at bay those negative traits in ourselves that they remind us of --
and that we don't want to deal with in ourselves.
    "Those poor homeless people!" "Those poor crippled kids!"
When we feel pity, and respond by giving money, what we're doing is
assuaging those external projections of our own internal "shadow"
by throwing money at them -- from a comfortable distance. This is a
typical psychological response; we all do it. In the recent movie, The
Fisher King, the scene in Grand Central Station gives us a good
example of this.
    The telethon gives us the perfect vehicle for doing something
we feel compelled to do psychologically anyway. That's why it's so
beloved a vehicle. People who love the telethon cannot admit to
themselves that what they feel is pity -- because to do so would be
to admit to an emotion that's not considered proper. That's why "we
can't get beyond this basic, basic, issue," as Diane Coleman put it --
and disagree as to whether the telethon evokes pity or not.
    To abandon the telethon requires psychological growth; a kind
that's hard to do.  The road to psychological wholeness, Jung said,
was for a person to accept those neglected parts of our selves, those
parts we want to deny -- which he called the Shadow -- and to re-
integrate them into our personality, accepting all of ourselves, good
and bad.
    Allowing telethons to exist is one way of keeping ourselves
from growing, by giving us an easy way to keep our projections
safely outside ourselves.
    The person who can accept herself, or himself, as they are,
does not need to throw money at cripples to feel better about
themselves. While they can help with very real needs, they need not
do it through a mechanism whose function is only there to make
them feel better.
    That's what the pity is about.  Without the hoopla, and
trappings -- just giving money to MDA, quietly, off TV -- is the
mature way -- and it's the very thing that's so fiercely resisted by
Service Merchandise's Raymond Zimmerman.
    When people resist giving money to MDA except on the
telethon, that's a clear signal: they're not giving it so much to really
help disabled people -- for that purpose would be clearly as well
accomplished without the telethon. It's not hard to figure it out:
they're doing it for the advertising value, and they don't care if it
offends disabled people in the process. But a psychological reading
would tell us that the reason the public accepts this convention,
even  admiring people who give money on the Telethon, is because
such people are performing a psychic task for the rest of us: giving
money on the Telethon expiates guilt. It keeps the Shadow at bay.
    People who are afraid to accept the neglected parts of
themselves, who are afraid to confront and deal with their own
fears of disability in themselves, find it easier to give to the
Telethon than to help out the proud young mother with a disability
who lives next door with two young kids. It's easier to give to Jerry
-- and feel good -- than to fight day after day with a store to install a
ramp -- and be disliked by the public for being an "agitator."
    If we begin to look at our individual Shadow, though, Jung
taught, we can discover a wealth of trapped energy inside us,
previously buried under self-loathing and fear -- fear of those parts
we refuse to acknowledge.
    Consider for a moment someone who strikes terror or disgust
in you. Look closely at what qualities cause your repulsion -- one
element at time. This can be a very frightening process. But once you
do it, once the qualities are no longer suppressed but confronted, you
release in yourself the pent-up unconscious energy you were using to
keep them at bay.
    Once this happens, disability, disabled people, and their
demands for rights, are no longer frightening. When this occurs, we,
like Jerry's Kids,  grow up. articleends
    articlebegins Final Thoughts.
    When Jerry Lewis sarcastically asked Evan Kemp to tell him if
he had a better idea of how to run MDA, Kemp suggested putting
disability activists on the MDA board.
    Earvin (Magic) Johnson made headlines when it was announced
that the National Basketball Association superstar was HIV positive.
Magic Johnson, everybody knows, is now considered spokesperson for
people with AIDS. What you didn't know: Johnson is also a
spokesperson for the Muscular Dystrophy Association. This isn't a
new thing, either: Johnson's been hosting an MDA fundraiser for
years; he serves on MDA's National Board.
    Magic could be one of the contenders to replace Jerry (other
rumors place Entertainment Tonight's Leeza Gibbons, MDA's national
chairperson for its Spinal Muscular Atrophy Division in the running).
As a person with a disability, he meets one of the key requirements
of critics.
    AIDS activists have gotten to Johnson and coached him in the
politics of AIDS. But who's gotten to Magic about the broader issues
of disability? Nobody, apparently. In their absence, MDA has gotten
its treacly schlock into him. That was apparent at last February's
fundraiser; he talked to reporters about being inspired by the
children he's met through his work with MDA. "These kids don't cry
about anything. Everyday is a good day . . . . They have an attitude
that's unbelievable. That's why I love them, and why I draw strength
from them."
    %J%J%J
    If they don't use pity, they won't raise money.
    Is AIDS worse than muscular dystrophy? Does AIDS fundraising
use the same kind of pity? A different kind? Is AIDS fundraising a
viable model to look at in casting about for solutions?
    The kind of activism surrounding cure for AIDS has never
surrounded muscular dystrophy.
    It's a matter of who controls the images. Who pushes the
research agenda on AIDS? Hard-core activists, for the most part.
Who pushes the MD agenda? Jerry Lewis and his cronies. It's probably
the ultimate example of the difference in tone "consumer control" --
activist consumer control -- makes.
    The public image of the AIDS community and MD research
advocates are poles apart -- just the terms set them apart: no one
would ever speak in terms of a "muscular dystrophy activist
community."  AIDS has vocal, angry activists of the Act Up bent;
muscular dystrophy has doomed children.
    %J%J%J
    Why do we need the millions Lewis raises? Why is research
into a cure the province of a private telethon? Why aren't Lewis and
his Kids storming the National Institutes of Health and fighting like
AIDS activists have done to force more federal dollars into research
for a cure?
    Neither research into cure for MD or AIDS gets but a smidgen
of money. That says a lot about how this nation chooses to get rid of
disease. We use billions for defense -- still. We use pity and a
pittance to help people live.
    Everyone who says "Jerry Lewis is doing a great job" or "they
have to portray things as they do in order to raise money" should
think of what it is they're saying: that disabled people are not
deserving of help unless they are shown on a Telethon. You who say
this are saying  that you will not give money just because it's
necessary. It must be given through the Telethon mechanism.
    And what is that saying?
    What you want is that feeling of catharsis that occurs on the
Telethon.
    %J%J%J
    William G. Stothers, of Mainstream magazine, believes, like
Kemp, that the MDA Telethon could raise more money than it does
with its current tactics by "showing America the real face of
disability.
    "Sure, the money flows faster and easier when you pluck the
heartstrings and make the tears of pity well up," he writes. "But,
hey, Jerry, you're a star -- re-invent yourself."
    It's an interesting thought. Could Jerry re-invent himself? Is
it possible for him to do anything when it comes to disabled people
that's dignified, that's rights-oriented? That fights for full
inclusion and acceptance?
    What about it, Jerry?