Home | About Us | Library | Links | Svenska
Listen
Projects: Radio | Fashion Freaks | Study &
Work | Training to Employment
From Poster Child to Protester
Copyright 1993 by Laura Hershey
[The
following article appeared in the Spring/Summer 1997 issue of Spectacle,
published by
Pachanga
Press,
Orange, pink, and lavender flyers
fluttered in the breeze as we handed them to any
passer-by willing to take one.
"Tune Out Jerry!" the flyers urged. "Boycott the
Telethon!" Some two dozen of us
lined up in front of the hotel shouting chants,
distributing leaflets, and answering
questions from the media, while the local segment of
the Jerry Lewis Labor Day Telethon
broadcast from a ballroom two floors above.
Though I would stay outside all
afternoon, I remembered all too well the scene that was
taking place inside.
The singers croon. The eyelids
droop. The money pours in. The firefighters, the Boy
Scouts, the business executives, the
neighborhood kids, all tiredly smiling proud smiles,
carry in their collected funds, in
jars, in boots, in oversized checks. The camera rolls.
The host smiles. The money pours in.
The Poster Child gives awkward answers to inane
questions. The host smiles. The
Poster Child smiles. The host cries. The money pours in.
You have to keep thinking about the
money, because as everyone freely admits, that's
what this is all about. The money
raised represents hope -- year after year, promises of a
miracle, the great cure that waits
just around the corner. The money manifests faith --
faith in the noble research
scientists working desperately to identify, and eliminate,
flawed genes. The money testifies to
human love and compassion, ruthlessly
sentimentalized in songs like
"They'll Never Walk Alone" which punctuate the twenty
or so hours of the telethon.
The money is what justifies, even
sanctifies, this annual ritual of tears and guilt. In 1999
the telethon raised over $53
million. That massive amount of money that people --
young and old, rich and poor -- feel
compelled to donate, giving "till it hurts," as Jerry
Lewis insists -- that money makes it
very hard to challenge what is actually going on.
But there we were, back in September
1991, on
challenging the Jerry Lewis Labor
Day Muscular Dystrophy Telethon. Along with
activists in cities around the
country, including
we were protesting the telethon's
portrayal of people with disabilities as helpless and
pathetic. We were asserting publicly
that this colossal begging festival, supposedly
carried out on our behalf, is
offensive to us and damaging to our efforts to become firstclass
citizens. Our protests were small,
but they would become an annual tradition --
Independent Living Institute
www.independentliving.org
Search
Page 1 of 11 From Poster Child to
Protester, by Laura Hershey
much to the annoyance of Jerry Lewis
and MDA.
For years we had been protesting
against the barriers which keep people with disabilities
from using buses, public buildings,
and other facilities. Now we were taking on one of
the biggest barriers of all: the
paternalistic attitudes which prevail in our society, and
which are reflected so dramatically
in the annual telethon.
It is difficult to raise objections
to something like the telethon; people are reluctant to
disparage, or even entertain
questions about, an effort which they perceive as
fundamentally good, or at least
well-meaning. That is understandable. It is an
uncomfortable truth, in social work,
in government activity, and in charitable endeavors,
that actions which are intended to
help a certain group of people may actually harm
them. By harm, I mean -- among other
things -- that these actions may reinforce the
already devalued status of people
with disabilities in this society. Looking closely and
critically at the telethon, as some
of us have started to do, brings up a number of issues
which I feel are essential to
understanding the status of people with disabilities as an
oppressed minority group in
cure versus accommodation;
self-expression and self-determination; and the relationship
between pity and bigotry.
The telethon has one goal -- to
raise as much money as possible for the Muscular
Dystrophy Association, or MDA.
Conventional wisdom says that the most effective way
to do this is to appeal directly to
the emotions of viewers -- to move people so strongly,
with stories of tragic suffering,
that they will want to help "save Jerry's kids." Money is
tight these days; charitable
solicitation is a competitive business. Invoking sympathy
sufficient to pry open wallets is
not an easy task. But those orchestrating the telethon
have a foolproof, not-so-secret
weapon: children. Never mind that two-thirds of MDA's
1 million clients are adults -- the
telethon is not in the business of trying to represent the
real lives of people with muscular
dystrophy. That's not the point. The point is to paint a
picture of a victim so tragic, and
at the same time so cute and appealing, that viewers
will be compelled to call in a
pledge. This victim must also appear helpless, utterly
unable to help him/herself, so that
the giver can gain a personal sense of virtue and
superiority from the act of giving.
Finally, the victim must display something called
"courage," which does not
resemble the bold, active kind of courage most people aspire
to or at least fantasize about, in
which one takes one's destiny into one's own hands and,
by exercising will and choice,
affirms oneself and/or one's place in the universe. No, the
"courage" demanded in this
instance is the willingness to deprecate oneself; to accept
other people's versions of one's own
reality; to reject one's own identity in favor of an
eagerly anticipated cure (this is
also called "hope"); to tolerate and even encourage the
assumption that life with a
disability is a life scarcely worth carrying on with, except for
the generosity of Jerry Lewis and
everyone involved in the telethon.
At the age of eleven, I was enlisted
into this role of cheerful victim. I was a Poster
Child. In 1973-74, I became a
mini-celebrity, appearing at fundraisers throughout
Colorado. I learned to smile
whenever a camera appeared, and to say "thank you" -- in
other words, 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 whole families, driving by to
drop their contributions in 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 two decades since then, the telethon
doesn't seem to have changed much. I
watch it every year, just to make sure. It's still
Page 2 of 11 From Poster Child to
Protester, by Laura Hershey
2/29/2008
http://twcreations.110mb.com/DisabPage/hershey93.htm
chillingly familiar. The sappy
music, the camera close-ups of wistful faces, the voiceovers
telling us about that person's dream
to walk someday, the tearful stories told by
parents "devastated" by
their children's disability, and the contributors coming forward
in droves -- it was all just the
same as I remember it.
But some things have changed; I have
changed. I don't know what my politics were as
an eleven-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.
Let's start with the money. Does it
help? Doesn't it make the stereotypes, the appeals to
pity, the obnoxious on-air begging
worth putting up with?
Yes, the money does help -- some
people, with some things. We are talking about a lot
of money here. MDA Executive
Director Robert Ross asserts that during its 26-year
history, the telethon has raised
over $600 million. In 1999, the telethon raised over $53
million.
With all this money coming in, I
would expect the direct services provided to people
with neuromuscular diseases to be
much more extensive, and more relevant, than they
actually are. I would expect, for
example, that when a person develops a condition
which begins to limit his or her
mobility, that MDA might come through with some
money for access modifications to
the home, so that the family wouldn't have to choose
between moving to an accessible
house (which are hard to find), or hauling the person
up and down stairs all day. I would
expect some support services for independent living
-- someone to assist with personal
and household needs, training in things like cooking
and cleaning from a wheelchair, and
help with transportation. I would expect MDA to
provide a motorized wheelchair for
anyone who wants one. Such a chair can boost a
disabled person's quality of life
enormously. Instead, MDA has very restrictive criteria
for determining who receives a
motorized wheelchair.
Far be it from me to advise a
multimillion-dollar agency on how to spend its money. But
when the telethon tells viewers that
by donating money to MDA, they are answering the
prayers of people with MD --
offering them a friend to turn to in times of need -- it
exaggerates.
Okay, say the defenders of the
telethon, so maybe the money doesn't help people now as
much as it should. Isn't it still
laudable that the telethon raises so much money to help
find a cure?
Ah, the cure. That's the promise
that keeps people sending in those checks. That's what
keeps this humiliation going year
after year. We're getting closer all the time! Jerry
Lewis assures us frenetically. He's
been saying it for four decades.
Shortly after my stint as Poster
Child was over, I remember meeting a stranger in a store
who recognized me from the telethon.
He said to me, "I bet you really hope they find a
cure soon!" When he said this,
I realized that by this time, I almost never even
contemplated that possibility
anymore, let alone hoped for it. I told him that. I don't
think he believed me. I find the
same reaction now, when I criticize the telethon for
implying that people with
disabilities sit around hoping and praying for a cure. I've
encountered people who, never having
tried it, think that living life with a disability is
an endless hardship. For many of us,
it's actually quite interesting, though not without its
problems. And the majority of those
problems result from the barriers, both physical and
attitudinal, which surround us, or
from the lack of decent support services. These are
Page 3 of 11 From Poster Child to
Protester, by Laura Hershey
2/29/2008
http://twcreations.110mb.com/DisabPage/hershey93.htm
things that can be changed, but only
if we as a society recognize them for what they are.
We'll never recognize them if we
stay so focused on curing individuals of disability,
rather than making changes to
accommodate disability into our culture.
Now, I'm not arguing that medical
research should halt entirely -- I'm just weighing the
cost-benefit value, in my life and
in the lives of my friends with disabilities, of the
millions of dollars spent on the
search for a cure, a search that will take decades, versus
the things we really need now, on
which society spends far less. We will probably never
benefit from the cure. We will
benefit from accessible buildings and transportation
systems, job opportunities, and
attendant services to provide us personal assistance. So
will future generations.
We have begun making progress in
those areas. In 1990, for example, the Americans
with Disabilities Act became law,
putting some legal teeth into our fight for civil rights
and access.
But for all our progress in the
areas of legal protection and accessibility, there's still this
lingering attitude that what people
with disabilities really need is to be cured. Society
wants the problem to go away, so it
won't have to accommodate people with long-term
disabling conditions. It wants us to
go away, or at least to "get better." One of my major
objections to the telethon is the way
it reinforces that attitude.
Sure, some people with muscular
dystrophy do hope and dream of that day when the
cure is finally found. As people
with disabilities, we're conditioned just like everyone
else to believe that disability is
our problem. We've been told over and over that our
need for accessibility to buses and
buildings, and our need for health services, are too
expensive, too unreasonable. Our
culture considers it shameful to be physically unable
to dress oneself, or to need
assistance in going to the bathroom. Rather than demanding
that the government provide such
helping services, many people with disabilities end up
hidden in nursing homes or in our
own homes, where personal assistance remains the
private "burden" of
individuals and families. Rather than insisting on having our
personal needs and our access needs
met, many prefer to keep quiet about these needs,
fearful to show ourselves lacking.
The telethon itself encourages such self-defeating
thinking. We are primed to regard
ourselves as substandard. We therefore hesitate to
assert our right to have that which,
because of our disabilities, we need. The telethon
teaches us to think that others will
provide for us because they are kind and generous,
not because we are a strong and
vocal community. When so many of us feel so negative
about our disabilities and our
needs, it's difficult to develop a political agenda to get our
basic needs met. The cure is a
simple, magical, non-political solution to all the problems
in a disabled person's life. That's
why it's so appealing, and so disempowering. The other
solutions we have to work for, even
fight for; we only have to dream about the cure.
The idea of a cure is at least in
part an effort to homogenize, to make everyone the same.
To draw a parallel, when I was a
child and first learned about racial discrimination, I
thought it would be great if people
could all be one color so we wouldn't have problems
like prejudice. What color did I
envision for this one-color world? White, of course,
because I'm white. I didn't bear
black people any malice. I just thought they'd be
happier, would suffer less, if they
were more like me.
We all have our own ideas about
which human condition is best, based on our own
assumptions about other people's
lives. These assumptions don't always jibe with reality.
People who assume that I live for
the day when a cure is found, when I (or future
generations) can live
disability-free, simply don't understand my reality. It's a question
of priorities. On the list of things
I want, a cure for my disability is pretty low. Higher up
Page 4 of 11 From Poster Child to
Protester, by Laura Hershey
2/29/2008
http://twcreations.110mb.com/DisabPage/hershey93.htm
on the list would be achievement of
my personal, professional, and social goals, and
these are not in any way dependent
on a cure.
Besides, there's an issue of pride
involved. Disability is a part of my whole identity, one
I'm not eager to change. Especially
not at the cost of my dignity and personhood, as the
telethon implicitly demands.
This gets to another important issue
the telethon raises in relation to the oppression of
people with disabilities: Whose job
is it to tell the story, or stories, of a group of people?
The telethon is full of
"profiles" of people with various forms of muscular dystrophy and
their families. Yet these stories
are packaged as products, not told as truth. Favorite
subjects are children, for reasons
discussed earlier -- children can be made to appear
more helpless, more pathetic, more
dependent on the public's generosity. Children are
also cute; therefore they seem more
deserving of help.
In comparison with my telethon
years, recent telethons do profile more adults with
muscular dystrophy. Some are
successful, competent adults. Yet somehow, even these
individuals were made to look
desperate and pitiable.
On any given telethon -- both on the
national broadcast from Las Vegas, and during the
cut-aways to local segments -- you
will see profiles of children and adults with muscular
dystrophy. These spots are all
fairly similar in tone and emphasis. As if by a prescribed
formula, each one contains several
key ingredients. In each, the parents speak about
their reactions upon hearing their
child's diagnosis -- even if, as in most cases, this has
occurred years, or even decades,
before. Naturally, these reactions include disbelief and
grief. Yet there is rarely any
discussion of how (or whether) the family has since come
to accept the knowledge of their
child's condition, to find resources (other than those
offered by MDA), to plan for the
child's future, or to promote the child's self-esteem.
The situation is presented as an
unmitigated tragedy.
I'm suspicious of this presentation.
I'm not trying to minimize the pain a parent might
feel upon learning that a child has
a disabling, potentially even fatal, diagnosis. There is
a very natural grieving process that
goes along with disability at any stage. But when I
see those emotions exploited so
crassly, I can't help wincing. For most of us, our losses,
gains, sorrows and joys are simply
part of a rich human life. The telethon works very
hard to convince people that our
suffering is extraordinary. This produces pity,
confusion and misunderstanding.
Another common element in these
pieces is the emphasis on "what Johnny can't do." A
child, usually a boy, is shown
sitting at the edge of a playground. The narrator talks
about the games the child can't
play, and how he has to watch other children running and
jumping. He can only dream, the
narrator tells us sadly.
Never mind that the kid might be
adept at playing Nintendo, or making rude noises with
his mouth. In the real world of
children, these skills are valued at least as much as
running and jumping. The truth is,
all children play at different levels of skill; most can't
run as fast as they would like, or
jump as high, or play as well. Children in wheelchairs
do play with other kids on the
playground -- I did. A child in a motorized wheelchair can
be mobile, active -- and popular, if
willing to give rides now and then. But instead of
acknowledging any of this, the
telethon encourages viewers to project their own worst
fears onto people with muscular
dystrophy: "Just imagine what it would be like if your
child couldn't play baseball."
Finally, each piece puts forward an
archaic and gloomy picture of the disabled family
Page 5 of 11 From Poster Child to
Protester, by Laura Hershey
member's role, and of the role of
the family in a disabled person's life. All the families
are described as
"courageous"; and they all seem to bear total responsibility for the
care
and support of the person with MD.
Spouses and parents alike are shown carrying the
person with MD up and down stairs,
pushing their wheelchair, and so on. Rarely if ever
is the disabled family member shown
making any positive contribution. In these stories,
the disabled person's status is
clearly (even if the word was never used) that of "burden."
I am all for supportive families. My
own parents and brother have stood by me
throughout my life, backing me with
assistance and encouragement. But I have also
built a life apart from them. Many
people with disabilities do so, getting educated,
working, and having families of our
own. I am able to live independently, working
toward the goals I choose, as long
as I have access to the support services I need --
primarily attendant services. I am
lucky that the state of
come to my home and help me get up
in the morning and get to bed at night. Most states
do not offer this service, forcing
people with disabilities to remain in the care of their
families, or to enter nursing homes.
Indeed, attendant services is the number one
disability rights issue of the
1990's. Activists are demanding that the federal government
divert a part of the huge budget
which currently subsidizes the nursing home industry,
and create a national system of
attendant services, available to anyone who needs them.
On the telethon, of course, this is
a non-issue. Disability is a private problem,
demanding faith and fortitude from
families, demanding generosity from viewers,
demanding nothing from the
government, or from society as a whole. If the need for
personal assistance is mentioned at
all, it is only to highlight, once again, the purported
helplessness of people with MD, as
in phrases such as "totally dependent on others for
the most basic activities the rest
of us take for granted." In fact, the opposite is true:
With decent attendant services at my
disposal, I become more independent, not more
dependent. But to present that truth
might undermine that vision of the long-suffering,
burden-bearing family.
The unvarying tone and content of
the pieces made it difficult to distinguish one
"patient" from another.
The profiles put forward a stereotyped view of what it means to
have a disability, rather than any
genuine stories of real people. We are all individuals,
and families are all different. Not
on the telethon, though. There we are made to fit the
mold. Even the language used on the
telethon distorts our reality and thereby
dehumanizes us: We are
"victims," we "suffer" from our conditions, we are
"desperate."
I have firsthand experience of this
distortion effect. Six or seven years after my Poster
Childhood was over, just before my
second year of college, I was asked to be
interviewed for a local pre-telethon
TV special. At first I said no. I was by now quite
leery of the telethon mentality. I
had also started becoming politicized, and was now
more interested in civil rights than
in charity. And I couldn't see any reason to
participate once again in the
simple-minded propaganda I remembered from my oncamera
appearances as Poster Child. Back
then, I had been asked questions like, "What
would you like to say to all those
nice people who are calling in their pledges, Laura?"
to which the obvious reply was,
"Thank you." Such questions left little room for honest
expression.
But the local MDA office promised
that the interview would be handled differently in
this program: The plan was to take a
positive, realistic approach and portray the real
lives of three real people. So I
agreed.
A TV news reporter conducted the
interview in my parents' home. She asked good
questions and allowed me to give
complete, intelligent answers. It was certainly a
Page 6 of 11 From Poster Child to
Protester, by Laura Hershey
different process from 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, I was horrified. Through careful editing, it had
turned into a sob story entitled
"Waiting For A Miracle." From that point on, I vowed to
have nothing to do with the
telethon.
Until 1991, that is. I learned that
two
were interested in coordinating
actions against the Jerry Lewis telethon. Like me, they
were both former poster children. I
urged people from
campaign. My decision to organize a
protest did not come without some thought. In fact,
I had for years contemplated doing
something like this, but had not. I knew that our
message would not be an easy one to
convey to the public. Many people are involved
with the telethon, either as
volunteers or as contributors. I knew that openly criticizing it
would cause confusion and anger. The
telethon enjoys widespread acceptance, even
acclaim.
But that is exactly why it's so
important, I feel, to raise our voices against it. Because it
is accepted as our reality. This is
my biggest gripe against Jerry Lewis, and against the
telethon: the extent to which they
claim to tell my story, our stories, without any
legitimate authority to do so.
The telethon's hegemony over the
image of disability is quite staggering. A 1996 press
release issued by MDA states,
"According to A.C. Nielsen, last year's Telethon was
watched by some 70 million Americans
or 27 million households. The MDA Telethon --
considered the granddaddy of all
Telethons -- ranks in viewership with the World Series
and the Academy Awards. " Those
70 million people are absorbing a message shaped by
greed, deception, and bigotry.
The bigotry of Jerry Lewis is worth
discussing. I don't necessarily enjoy attacking
another person's motives, but I hear
defenders saying, "Jerry Lewis is trying to help so
many people. How dare you criticize
his methods?" This means-justifies-the-ends
argument has a long and despicable
history, which I don't need to go into here. Even
more dangerous is the attitude that
people who are "being helped" have no right to say
how they want to be helped, or
treated, or thought of. This is paternalism at its worst. By
being the object of charitable
efforts, do we thereby waive our right to respect, and to
free speech? If people are really
interested in helping me, wouldn't they want to hear me
tell my own story, rather than
hearing a distorted version of it from someone who not
only doesn't share my experience,
but who doesn't even seem to want to listen to me?
With the stated goal of
"helping" his "kids," Jerry Lewis is helping to keep alive
the
most pernicious myths about people
who have disabilities. He ignores our truth,
substituting his own distorted
assumptions.
If our protest did nothing else, it
allowed some of us the opportunity to say, "No, this is
not our reality. If you want to know
what our lives are like, listen to us. If you want to
know what we need, ask us. If you
truly want to help us, let us tell you how. And if you
pity and fear us, please own that;
then let us work together at changing the world so that
disability will not be something to
fear, but something to try to understand."
The response to our protest has been
interesting. Many people seem to resent our daring
to object to these distortions,
half-truths, and stereotypes. I have been called
"ungrateful,"
"cruel," and "insensitive" -- simply for trying to counter
all this with the
truth, with my truth. At the very
least, I feel that the protest has enabled me and others to
Page 7 of 11 From Poster Child to
Protester, by Laura Hershey
begin getting on record our own
stories, in contrast to the misleading accounts that come
from the telethon.
Media is a powerful thing. It can
deceive, or it can enlighten. About a week after that
1991 telethon, a publication arrived
in my mailbox called MDA News Magazine, put
out by the national Muscular
Dystrophy Association office. I started to leaf through it,
expecting to find the same kinds of
negative stereotypes that permeate the hours of the
telethon. Instead, I found articles
about job-seeking strategies; profiles of successful
individuals who have neuromuscular
diseases; honest and thoughtful pieces about
families of children with
neuromuscular diseases; lists of useful resources; and clinical
updates. All of it was written in a
positive, realistic tone, using respectful and
appropriate language. The phrase
"people with disabilities" was used at all times --
never "victims," or
"sufferers," and certainly not "cripples."
One article, written by Marie Hite,
whose son has muscular dystrophy, stood out. Its
basic theme was very similar to some
of the telethon spots I had viewed: the difficulties
a child has in coping with a
progressively disabling condition. But Hite's treatment of
the subject couldn't have been more
different from that presented on the telethon. In her
article, her son confided that he
could no longer climb a neighbor's tree; he asked his
mother for an explanation. She
replied that his muscles didn't work the same as other
children's.
Whereas the telethon would have used
this situation to create pity, this article used it to
tell a touching, upbeat story. In
it, the focus was not so much on how the boy differs
from other children, but on how the
author helped her son understand his disability, and
on his own resourcefulness in
adapting to it. The grief was not denied, but neither was it
overdone.
Tears instantly flowed down Petey's
cheeks. 'But, Mom, I want to climb trees, too,' his
voice pleaded.
Silence....
What to say?...
I let him know that it was OK to
feel sad, and I stayed with him.
Five minutes later, he was OK again.
'Petey, I'm going to help you climb
Mrs. Kurly's tree when I get home from work,' I
said. His face lit up....
Her conclusion emphasized the boy's
fundamental similarity to other children in
struggling to understand and come to
terms with himself and his world:
He had accepted his limitation as
only a 6-year-old can, with childish grace and fantasy.
There are limits -- and tree trunks
-- that love, with a little ingenuity, can rise above.
Like other 6-year-olds, Petey just
wanted to play in the tree.
In Hite's piece, Petey got what he
wanted, with some assistance and adaptation; in fact,
this describes fairly well how most
people with severe disabilities live -- with assistance
and adaptation. Petey was portrayed
as a real child, full of humanity. What a different
view from that to which telethon
viewers are exposed annually!
Page 8 of 11 From Poster Child to
Protester, by Laura Hershey
I was impressed by the
sophistication and sensitivity of the writing in this magazine --
but also a little baffled. How could
the same organization that edits this publication, with
its realism and insight, also
produce the Jerry Lewis telethon? They know better! I
thought.
Then I realized the reason for the
apparent split personality within MDA. I was seeing
two very different presentations,
intended for two very different audiences. The
magazine is aimed at people with
neuromuscular diseases and their families. I commend
MDA for offering their clients such
a high-quality forum for education, information, and