From: ADAPT <cyanosis@igc.apc.org>
Subject: 09/92 - The Disability Rag (4/6)
Followup-To: alt.activism.d
Originator: rich@pencil.cs.missouri.edu
Organization: ?
Date: Sun, 3 Jan 1993 08:19:34 GMT

/* Written  9:01 pm  Jan  2, 1993 by cyanosis@igc.apc.org 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?


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