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CHAPTER I

TINY TIMS, SUPERCRIPS, AND THE END OF PITY

r hearts. The

T h po ster child is a surefire tug at ou . .

e . d ralsm . . k d to represent chanty fun – g chIldren pIC e . . 1 h

d mined and insplratlona , t e drives are brave, eter , . f life and health.

.’ f the ctuelest whIms 0 most innocent VICtims 0 .” 1 k” fates-a condition that

‘1 h h theIr un uc Y Yet they sml e t roug b . h handful of . 6 ncy to a rutlS weakens muscles or cuts 1I e expecdta No other symbol of

. “d t “or childhoo trauma. years, a bIrth e ect . than the cute and

. b 1 d by Amencans disability IS more e ove 1 hed by people with

h’ld-Or more oat courageous poster c I

disabilities themselves. . d’ J who publishes and ” lams Cyn lones,

“Pity oppresses, camp . N ther sym- . . nal disability magazme. a a

edits Manzstream, a natlO than charity . .’ 1 ity more, Jones says,

bois of dIsabIlIty P ay up P h ld know’ she is a telethons and their poster children. Jones s au ,

former poster child herse~f. ‘k Cinderella when, at age five, Jones remembers feelmg h e

12

\

l

Tiny Tims, Supercrips, and the End of Pity 13

she was chosen as the March of Dimes poster girl in St. Louis.

It was 1956. A photographer flew in from New York and

outfitted her in fine, frilly party dresses. She was kissed by the

mayor. Her image-smiling gamely and holding on to her

crutches-was painted on a huge billboard in the heart of down-

town. She was a television celebrity, too, having appeared on the

January telethon. There, she touched hearts-and opened wal-

lets-across St. Louis when she dropped her heavy aluminum

crutches at a producer’s instruction and walked a few wobbly

and terrifying steps before falling with a clumsy thud to the

stage. It was good drama for a telethon, although the young girl

had cried at the thought of having to abandon her crutches,

knowing she would not get very far.

The Cinderella spell was broken for good a few months later

in Jones’s first-grade classroom when her teacher handed out a

flyer urging parents to sign up their children for a polio vaccina-

tion. PARALYTIC POLIO IS INCREASING AGAIN, declared the head-

line across the top of the page. VACCINATE YOUR FAMILY NOW

AGAINST POLIO. Underneath were two photos. One was of a

young brother and sister, holding hands and joyfully skipping

through a field. Over their picture was stamped: THIS. Next to

them was a picture of Jones, leaning grimly on her braces, hair

curled, decked out in one of her new party dresses. The caption

over Jones’s picture said: NOT THIS. Jones slid down in her seat,

embarrassed, hurt, feeling “invalid,” she recalls, and holding

back tears. She hoped none of her classmates would recognize her

but knew every one of them would. She now understood with a

bitter clarity. It had all been a lie; she was not special-she and her polio were feared.

That Jones and most other disabled people have come to find

the poster child an oppressive symbol reflects the fact that a

disability rights movement is radically reshaping the world of

people with disabilities. The 35 million to 43 million disabled

Americans have come to take a growing pride in being identified

 

 

No Pity

as disabled. And, like blacks, women, and gays before them, they

are challenging the way America looks at them.

Rejected is society’s deeply held thinking of tin cups and

Tiny Tim-the idea that disabled people are childlike, depen-

dent, and in need of charity or pity. People with disabilities are

dem.anding rights, not medical cures. To Jones, there is nothing

tragIc about the childhood polio that resulted in her needing a

wheelchair or a three-wheeled, motorized scooter to get around.

Disability becomes a tragedy only when she and her husband

Bill Stothers, who also uses a wheelchair, cannot get into ~ restaurant or are kicked out of a movie theater because the

manager decides their scooter and wheelchair make them a “fire

hazard,” as happened near their home in San Diego.

But what if a miracle cure were developed overnight?

Wouldn’t Jones eagerly swallow a magic pill that would wipe

away the lingering paralysis of her polio and let her walk again?

She answers quickly: No. “It’s the same thing as asking a black

person would he change the color of his skin,” says Jones. That is

not to deny that being disabled is difficult. Some people with

disabilities have persistent pain or chronic poor health. Many can

count on shortened life expectancies and loss of independence over

time. For Jones, as with other polio survivors, there is the fear that

her muscles will deteriorate with age and that, in addition to

lacking mobility, she will lose the ability to care for herself. Yet,

as Jones sees it, “The main thing disabled people need to do is to

claim their disability, to feel okay about it. Even if you don’t like

the way society treats you as a disabled person, it’s part of your

experience, it’s part of how you come to be who you are.”

And that is why the poster child image oppresses. “The

poster child says it’s not okay to be disabled,” argues Jones. “It

plays on fear. It says this could happen to you, your child, or your

grandchild. But it says, if you just donate some money, the dIsabled children will go away.”

The early poster child campaigns of the mid-I940s and

r Tiny Tims, Slipercrips, and the End of Pity 15

1950S did “evoke images of cure,” says Marilynn Phillips, a

Morgan State University professor of folklore who has studied

images of poster children. There were never poster adults. Dis-

ability was barely tolerable-and only to be pitied-when it

struck cute and innocent children. It was unmentionable in

adults. The poster child was pictured often on the lap or in the

arms of a protective adult, who, the ad copy suggested, could

help restore the child’s health by donating to the charity. “It was

a secular religion. If you sent your money, your dimes, you got

miracles. You got cures,” says Phillips, who, like Jones, is an-

other regenerate poster child. “Then something funny happened: not everybody was

cured,” says Phillips. Dr. Jonas Salk invented his polio vaccine,

and the fear of polio subsided. But the vaccine did not cure

Jones, Phillips, or the other children and adults who already had

the virus. “It was promised we’d be fixed and we weren’t,” says

Phillips. “So something had to be wrong with us,” not with rhe

unrealistic expectation that they would be cured. Disabled chil-

dren became an affront to the country’s postwar faith in “tech-

nology and progress-the good old American way,” contends

Phillips. Starting in the mid-I950s, she says, there was a new

image in the charity poster child campaigns: the valiant “crip-

pled” child on crutches, trying to walk. Now, says Phillips, disabled children were “damaged goods”

who had to “try harder” to prove themselves worthy of charity

and society’s respect. If science could not cure disabled peol)k,

then society would expect them to cure themselves. It would

take h~rd work, det~rmination, and pluck. “It was the HUlatio Alger cripple story,” says Phillips. The worthy cripple wa, ..:x-

pee ted to overcome his or her disability. “You were expected 10

be jumping up stairs, even if you used a wheelchair. You wert

expected to be doing anything you had to do, even if it n,LwL

collapsing at the end of the day.” It was not just those with polio but all disabled people who

 

 

No Pity

were expected to overcome in this way. For those with polio,

however, this expectation proved to be a bitter irony. The “best”

polio patients were those who tried hardest to beat their paraly-

sis by building up other, working muscles. They walked on

heavy braces and crutches, although it was exhausting. Those

who used a wheelchair because it was easier were reproached as

lazy. But in the 1980s, medical specialists began reporting

studies of postpolio syndrome, the atrophy of a polio survivor’s

working muscles as he or she aged. Those who had walked on

crutches now had to settle for using wheelchairs. Those who had

maneuvered push wheelchairs now traded them in for battery-

powered ones. The irony was that the “best” patients, those who

had exerted themselves the hardest, later seemed to watch their

remaining muscles be eaten away the fastest. Doctors had not

advised such early exertion out of any medical certainty that

Walking was physiologically superior to using a wheelchair, says

Phillips. They had done so because sociologically)t was ex-

pected.

The belief that a disability could be overcome led to the

rise of the other ruling image of disability: the jnspirational

disabled person. It is another model deeply moving to most

nondisabled Americans and widely regarded as oppressive by

most disabled ones. The disability rights movement discards

the notion that people with disabilities should be courageous

or heroic superachievers, since most disabled people are trying

simply to lead normal lives, not inspire anyone. Many disabled

people even use a derisive nickname for such people: “~I,!per­

crips.”

The “supercrip” is the flip side of the pitiable poster child.

It is just as hurtful, Jones argues, because it implies that a

disabled person is presumed deserving of pity-instead of re-

spect-until he or she proves capable of overcoming a physical

or mental limitation through extraordinary feats. Today, these

“supercrips” remain among our most glorified disabled role

models, lavishly lauded in the press and on television. Such

r Tiny Tims, Supercrips, and the End of Pity

uncommon achievers have included Mark Wellman, a paraplegic

park ranger who won widespread press coverage for climbing

granite peaks in Yosemite National Park, and Terry Fox, a

cancer survivor whose run across Canada on an artificial kg

became television movie fare. (In an arch cartoon by John Calla-

han, himself a quadriplegic, two heads mounted on skid carts at

a street corner beg with tin cups. The first head says to the

second, who is identical except that he is wearing an eyepatch,

“People like you are a real inspiration to me!”) While prodigiolls

achievement is praiseworthy in anyone, disabled or not, it does

not reflect the day-to-day reality of most disabled people, who

struggle constantly with smaller challenges, such as finding a

bus with a wheelchair lift to go downtown or fighting beliefs

that people with disabilities cannot work, be educated, or enjoy

life as well as anyone else.

~. —

•

I • • l • I .’ ‘ftop\t l:kp l.jolACI.~C. ~ .. tol,n~p,,,,,,TIO” r ……..

John Callahan cartoon reprinted from Don’t \florry, He Won’t Get Fclr 011 Foot, permis:’lOn ot Ll”\ III

Represents.

Even disabled achievers who do not seek such veneratiull

often have it thrust upon them by an adoring public and prL~J. Baseball pitcher Jim Abbott was cheered sincerely but will, a

 

 

IS No Pity

paternalistic fervor during his rookie season. Because he was

born without fingers on his right hand, Abbott has an unconven-

tional way of pitching. He throws with his complete hand,

cradling his pitcher’s glove on the other. He had taught himself

how to move the glove onto his left hand in one swift motion

as he completed his pitching delivery. He can catch the ball in

his right hand, then whip off the glove, pick out the ball, and

throw it with his complete hand. USA Today led its sports page

with a breathless account of Abbott’s first spring training game

in March I989· ABBOTT SHINES IN ARIZONA read the headline

atop the story that reported that the pitcher had “flourished,”

struck out slugger Jose Canseco, and even “made a smooth pivot

to nail” a runner at second base. A more restrained accounting

from the Associated Press in the same day’s New York Times

carried the headline ABBOTT STRUGGLES IN DEBUT and reported

a very different game. The “smooth pivot” was actually a

botched play, in which Abbott “allowed a run when he was slow

trying to rum a double play.” He may have struck out Canseco,

but he “struggled” with wildness in the two innings he pitched,

during which he gave up a run and walked three batters.

Despite the reverential treatment Abbott got for a mediocre

performance, he was not seeking worship. like most other dis-

abled people, he wanted only to make it in his professiQnon

equal terms with everyone else. Abbott knew that his manager,

in search of a pennant, was not going to allow sentimentality to

determine his starting pitching rotation. Abbott did make the

California Angels that year and went on to prove himself one of

the more talented pitchers in professional baseball. Because he

made nothing special of his disability, his unorthodox playing

style soon became secondary to his earned run average.

While Abbott’s acceptance on his own terms may be what

disabled people hope for, the poster child and “supercrip” im-

ages remain the most significant obstacle to normal interaction

between nondisabled and disabled people. Disability rights ac-

, ,

Tiny Tims, Supercrips, and the End of Pity

tivist Mary lou Breslin can tell a story of how her own real J( y

clashed with stereotypes and prejudice about disability. Awair-

ing her flight at the airport, the executive director of the

Berkeley-based Disability Rights Education and Defense h,uJ

(DREDF) was sitting in her battery-powered wheelchair, in

her dressed-for-success businesswoman’s outfit, sipping from a

cup of coffee. A woman walked by, also wearing a business

suit, and plunked a quarter into the plastic cup Breslin held in

her hand. The coin sent the coffee flying, staining Breslin’s

blouse, and the well-meaning woman, embarrassed, hurried

on. Most disabled people can tell similar stories, like Natiollal

Public Radio’s John Hockenberry. He had been the network’s

prolific West Coast correspondent. But Hockenberry’s bos~es

and colleagues had never met him until one day, a few years after

he had begun filing his reports, he showed up at NPR’s Wash-

ington headquarters. His appearance was jolting. Hockenberry

is a paraplegic. Only a few in the newsroom knew this. How, IllS

fellow correspondents wondered, had a man in a wheelchair

managed to cover political races or the exploding Me Saint

Helens volcano? Then they realized, in a distutbing wave of

self-recognition, that had they known of his disability, Hockeli-

berry almost certainly never would have been given sllch chal-

lenging assignments. It would have been assllmed that he was

not able to cover them. Our society automatically underestimates the capabilities of

people with disabilities, observing what I call the Hockenberry

Rule. Or, put differently, a disability, of itself, is never as dis-

abling as it first seems. The only thing that could have kept

Hockenberry from being an accomplished reporter would have

been the paternalistic assumptions of his colleagues.

According to the thinking of the disability rights move-

ment, it is not so much the disabled individual who needs to

change, but society. It may be the automatic assumption that a

 

 

20 No Pity

man in a wheelchair cannot get around to do his job. Or that a

woman in a wheelchair holding a cup of coffee–even if she is

a smartly dressed attorney with a briefcase-is a beggar in need

of charity. It may be an employer’s refusal to hire a cancer

survivor or someone with epilepsy, or a larger societal failure to

build offices, houses, hotels, and stores accessible to people in

wheelchairs. Says disability rights activist Judy Heumann, “Dis-

ability only becomes a tragedy for me when society fails to

provide the things we need to lead our lives-job opportunities

or barrier-free buildings, for example. It is not a tragedy to me that I’m living in a wheelchair.”

For the first time, people with disabilities are defining them-

selves .. They are saying their existence is all right. Mary Johnson,

the editor of The Disability Rag, the irreverent magazine of the

disability rights movement, says the best analogy may be with

gay rights. Like homosexuals in the early 1970s, many disabled

people are rejecting the “stigma” that there is something sad or

to be ashamed of in their condition. They are taking pride in

their identity ,as disabled people, parading it instead of closet- ing it.

. Th.is simple but iconoclastic thinking-that a disability, of

Itself, IS not tragic or pitiable-is at the core of the new dis-

ability rights movement. Using it, disabled people have quickly

begun to attack discrimination wherever they find it, deriving

unexpected power by playing off the very stereotypes they seek

to destroy. Consider the case of Evan Kemp, Jr., one of the

advisers credited with convincing President George Bush to

make disability civil rights a priority of his administration.

Kemp, one might say, was the original Jerry’s Kid. His

parents, along with parents of other children with muscular

dystrophy and related conditions, founded the Muscular Dystro-

phy Association. In 1947, Kemp, then twelve, had come down

with an illness that, for years, confounded doctors. It was ini-

tially thought to be amyotrophic lateral sclerosis, better known

Tiny TimJ, SupercripJ, and the End of Pity 21

as Lou Gehrig’s disease. A doctor told him to his face that he

would die before reaching his fourteenth birthday. When he did

not die, doctors decided that he had Duchenne muscular dys-

trophy and likely would not live beyond his teens. Not umil

Kemp was twenty-eight was his illness diagnosed properly as

Kugelberg-Welander syndrome. The rare muscle-weakenlllg

disease related to polio is one of the forty conditions supported

by the muscular dystrophy telethon. In 1959, Kemp’s mother

and other parents put together the first telethon on a television

station in Cleveland, where the Kemps lived. Their idea was to

use the new medium of television to broadcast a variety show

where entertainers and celebrities would ask viewers to dona’e

money for muscular dystrophy medical research. In I’;I1l6, Jerry

Lewis took over the national telethon, which he would perfect d~

an extravaganza of Las Vegas glitz and schmaltz. To date, Lewis’s

Labor Day telethon has raised over $ 1 billion, and other charities have begun their own telethons. Without question, Lewis’s tirl’

less fund-raising built MDA into an organization that would

support important scientific work. But Kemp felt that such

telethons fostered the stereotype that muscular dystrophy was a

tragedy, its “victims” childlike and perpetually sick, and thar

these misconceptions hurt disabled people more than the condi-

tion itself. Kemp, a quadriplegic who uses a wheelchair, wOliI,l

encounter such attitudes often. In 1991, as chairman of the

federal Equal Employment Opportunity Commission, he haLl

flown to Jacksonville, Florida, to make a speech. City officia Is

sent an ambulance, instead of a van, to pick him up. Kemp

refused to ride in it, since he was not sick. Instead, he flew back

to Washington.

A long history of such slights helped put dout behiIhl

Kemp’s 1981 attack on the Muscular Dystrophy Association’s

annual Labor Day telethon. On the opinion page of The N’:Ii’

York Times, Kemp complained that the telethon encouragnJ

prejudices about disabled people. “By arousing the public’s fe”.

 

 

22

No Pity

of the handicap itself, the telethon makes viewers more afraid of

handicapped people,” wrote Kemp. “Playing to pity may raise

money, but it also raises walls off ear between the public and us.”

Further, by focusing on innocent children, the telethon, he said,

“seems to proclaim that the only socially acceptable status for disabled people is their early childhood. The handicapped child

is appealing and huggable-the adolescent or mature adult is a

cripple to be avoided.” Kemp objected that the telethon focused

on the tragedy of a small number of children who died from

muscular dystrophy, when in reality a far greater number of

adults, like himself, led normal lives with neuromuscular condi-

tions. Finally, he charged, “the telethon’s critical stress on the

need to find cures supports the damaging and common prejudice

that handicapped people are ‘sick.’ As sick people, it follows that

we should allow others to take care of all our needs until a cure

is found.” For one of the few times in its history the telethon

collected less money than the year before, the result perhaps of

both recession and Kemp’s complaint. It would take another decade before large numbers of disabled people would echo

Kemp’s complaint about the telethon’s “pity approach.” In large

part this was because a broad disability rights mind-set would

not flower until the passage of the Americans with Disabilities

Act in 1990 and its enactment into law in 1992. It vexed MDA

officials that the disability movement’s anger was cresting at the

moment of some of MDA’s most spectacular research success.

Most stunning was the finding announced in 1992 of the precise

DNA location of the gene that caused myotonic dystrophy. Yet,

once again, these breakthroughs were not cures so much as

prevention measures. And to the new disability rights move-

~ent prevention had ominous overtones. Many activists fear that with the growth of such predictive tests, pregnant women will

be expected or coerced to abort fetu~es when there is an indica- tion of disability. Others worry that if genetic engineering can

one day wipe OUt an illness, a person who already has that

Tiny Tims, Supercrips, and the End of Pity

fi k d 1 d as a preventable d · b’l’ ’11 be seen as a rea or eva ue Isa I Ity WI

mistake. d’ ‘ J . ” T As disabled people asserted their demands for Iglll ty, U I}

L · d to I’ntensify his mawkish pandeCing. In a 1990 eWls seeme ‘. ‘ . . . 1 h omedian wrote of imagln1l1g h101Selt as magazlOe artlC e, t e c , .. ,

f J ‘KI’ds It would be he mused, the life of hali a one 0 erry s. , “‘) ” k ‘ h lchair Cthat steel impCisonment to person, stuc In a w ee . . ”

h he “other cripples” play while Wishing he could play watc t , I” (T basketball like normal, healthy, vital and energetIC peop e~ ,,0

d ” olOid a ‘n Chl’cago Lewis used the wor mong , a reporter I, ‘,J . 1 1 odl’ous and obsolete term for retardation that seeme pm~uy ‘f

‘ 1 ‘ ‘from the mouth of a self-styled champIOn 0 )0 tlOg com 109 , I- d’ bl d people,) Yet in his magazine article, LeWIS also spo ~e

flsah e d fior accessible homes, restaurants, planes, and hotels, o t e nee ” making his writing a strange stew of the, worst pity stereotypes

mixed with a dash of disability rights thlOklOg, The telethon IS

a similarly odd concoction, It features a handful of tales of now d 1 k-a nod to lhe f 1 chl’ldren in school or a u ts at wor success u , , ‘ l>

‘ , , ” of disabled people and their famlhes- lit evolvlOg senSItivIties , ” I ‘ fi d h fi f disease the misery of disability, am remains Ixe on t e ear 0, , , ‘

unfortunate Jerry’s Kids doomed to early death” fhat the dlJ~-

, k d for their smi1111g and cheelY dren on the telethon were pIC e , ,

personalities makes their impending tragedy all the more plCla-

bk h ‘ ‘But pity opens hearts, and that raises a quandary for c a~lfJes

like MDA: Do they listen to the complaints of CfltlCS lIke Kell1p

d ‘fi hat is consldere t elf est mo , d h ‘ b ney-mak111g pitch? an sacCi Ice w ‘II’ J ” db the $80 ml iOn ral~c One Los Angeles columOist, Impresse y ”

, h ght Lewis’s critics ungrateful and misgUided” 1fe IOI99I,tou Id “Let’s ask this last question of the marchers who WOli

wrott, ‘h’ ‘ like to see Lewis drummed out of the telethon: Just W 0 IS gOlllg

, ‘;>” to keep this cash machlOe g0111g, I ‘

Other charities, however, have junked the pity approac 1 I~

h ‘ I thons The National Easter Seal Society anel lJ nil c t elr te e ,

 

 

No Pity

Cerebral Palsy Associations have turned their shows into vehicles

for rights advocacy. The numbers on the tote board climbed

st~a~ily,. from $23 million in I985 for Easter Seals to $42 mIlIJQn 10 1992, disproving old ideas that a telethon had to

make hearts bleed. “Our mission is to enhance the independence

of people with disabilities,” explains Easter Seals president

James E. Williams, Jr., “and that can’t be done on the backs of

the people we serve by using pity.” The charity replaced its

poster child with a “representative” child and adult. Those

chosen are shown as successfully integrated in their schools, jobs,

and communities. “One of the biggest problems facing disabled

people is stereotypes. If you portray people as objects of pity, in

a mass medium like a telethon which has sixty million viewers then it only reinforces those stereotypes,” says Williams. ‘

Many disabled people, like Kemp, point to the Easter Seals

and VCP telethons as acceptable models. But for others, like

Marilynn Phillips, “There are no good plantations and there are

no .gOO~ telethons.” Indeed, other telethons, even when they aVOId pity language, still tend to divide the world between the

lucky and unlucky, between us and them. Even the best still play

maudlin violin music softly underneath the profiles of adults.

There is always an implied and frightening threat that all of us are vulnerable to the same misfortune.

From Image to Action

It is not only those paralyzed by polio and related conditions

who have begun to reject our society’s image of and expectations

for them. Patrisha Wright, president of the Disability Rights

Education and Defense Fund, believes that “All disabled people

share one common experience-discrimination.” Statistics show

that disabled people agree. Seventy-four percent of disabled

Americans say they share a “common identity” with other dis-

abled people, and 45 percent argue they are “a minority group

Tiny Tims, Supercrips, and the End of Pity 25

in the same sense as are blacks and Hispanics,” according to a

1985 poll by Louis Harris and Associates. These numbers, re-

flecting a militant disabled population, may surprise a society

that still assumes disabled people will be grateful for charity .wd

eager to be made whole again. If anything, disabled people are

far more likely today to view themselves as part of an oppressed

minority. Since 1985, the Gallaudet student protests and pas-

sage of the Americans with Disabilities Act have broadened the

sense of group identity and a commitment to overcoming prej u-

dice.

Often the discrimination is crude bigotry, such as that (Jf a

private New Jersey zoo owner who refused to admit chil,ju:n

with retardation to the Monkey House, claiming they scared IdS

chimpanzees. It may be intolerance that permitted a New Jer,;(‘y

restaurant owner to ask a woman with cerebral palsy to leave

because her different appearance was disturbing other dinns.

Resentment may have led an airline employee in New York to

throw a sixty-six-year-old double amputee on a baggage doll y–

“like a sack of potatoes,” his daughter complained-rather dIan

help him into a wheelchair and aid him in boarding a jetliner.

Others may feel that disabled people are somewhat less than

human and therefore fair game for victimization, as when a g.lllg

of New Jersey high school athletes allegedly raped a mildly

retarded classmate with a baseball bat in 1989. Because of the

girl’s retardation, a judge later relaxed the rape shield law that

existed to protect the privacy of rape survivors. She became tWice

victimized as the 1992 trial focused on her sexual behavior–

including whether she had once delighted in seeing boys naked

in a locker room-as much as on the actions of the boys accllsed

of raping her. In a similar case, three volunl<.er ambulance

rescuers allegedly pummeled to death a homeless man ,i th

retardation in the back of their ambulance because he annoyed

them, as if, in a prosecutor’s words, he were “a punching bag.”

In other cases, however, the discrimination at issue is more

 

 

No Pity

subtle because it is based on the paternalistic assumption that

disabled people are not entitled to make their Own decisions and

lead the lives they choose. One such case was that of Tiffany

Callo, a woman with cerebral palsy, who in I988 fought, unsuc-

cessfully, for custody of her two young sons. California welfare

officials asserted that she was too physically disabled to care for

them. The state was willing to pay the bill for expensive foster

care rather than fund several hours a day of in-home child care

to support Callo. Basic rights of parenthood were denied that

would have been unquestioned for a nondisabled person. Being

a Successful parent, after all, has less to do with one’s ability to

move around than with the love and nurturing that Callo’s

supporters said she brought to her family. “So what if it takes

longer to change a diaper?” asks Callo. “That’s where disabled parents do their bonding. It’s quality time.”

Also troubling was the case of Sharon Kowalski, seriously

disabled from a head injury in an automobile accident, who was

refused her wish to leave a nursing home to live with her former

roommate, Karen Thompson. A COurt questioned whether she

had the judgment to make such a decision. The head injury had

impaired some of her mental ability, particularly her short-term

memory. Yet Kowalski remained capable of making a choice.

She still had wishes, emotions, and knowledge. When I visited

Kowalski and Thompson, the tenderness between them was

clear. They held hands, and Kowalski smiled broadly as Thomp-

son recounted how the two had recently gone fishing from a boat

on the Mississippi River. Kowalski, animated and happy, was

clear about wanting to leave the suburban Minneapolis nursing

home and move into the new home Thompson had built to be

wheelchair accessible. Kowalski spoke briefly, slowly typing out

her answers on a small computer with a voice synthesizer that

Thompson had bought for her. Mainly, she communicated with smiles and sounds.

It was a scene far different from the one painted by St. Louis

———-

Tiny TimJ, SupercripJ, and the End of Pity

County District Judge Robert Campbell. The jud,~e conceded

that Kowalski, when asked where she chose to live, has con5lst-

I ‘d ‘St Cloud with Karen.”’ But Campbell deCided ent y sal, . . If Kowalski was no longer capable of making chOiCes for hers.:

and ruled that she needed the continued protection of a nurS1l1~

home. The issues were difficult an compoun e d d d by Kowalski s

homosexuality. Kowalski’s parents denied their daughter could

b 1 b · nd claimed she was being exploited by Thompson e a es Ian a

to raise money for lesbian causes. (Actually, Thompson had been

I t d lesbian until Kowalski’s accident forced her to go a c ose e . d . I public.) Campbell noted that another woman now live Wit 1

d C d this could hurt Kowalski emotIOnally, Thompson an reare

though Kowalski already knew about the other woman from her

. 1 trl’ps to Thompson’s home. Even if Kowalski regrl:t-occaSlOna . ted her decision, she could always choose to return to a nursllIg

home or live elsewhere. No nondisabled woman w~uld b,e dellh:.:~

h fi hoice to live with her lesbian lover. The Judge S fad’lle er ree c f I … t t honor Kowalski’s clearly stated wishes was part 0 tIe Ifl an-

t~izing of people with disabilities,” complained the late dIS- . h C k “We’re treated Id~e ability rights attorney Tlmot y 00.

I h ‘ld ” ACter seven years of court battles, Thompson eterna c I reno r,

finall won guardianship of Kowalski in late 199 I.

B:t the biggest problems of discrimination are more every-

day and more -e~trenched, such as employment biaS. Only onc- third of disabled people hold jobs. Seventy-nine percent ot (lie

h rk and would like to work, accordlllg tu a rest say t ey can wo .

H . 011 but they are prevented from dOlllg so because, 1994 arns p , . . ., k ther reasons, they face discriminatIOn 111 hlflng or L,

among 0 k ” . i f . They “want to work and can wor ” lllstea( 0 transportation. . t- I

If: S ndra Swift Parnno () t le being forced to accept we are, says a . ._

National Council on Disability. Although she says a dlsaLdllY

rna limit the type of work a person can do, more often compa-

O1e~ simply do not want to hire or accommodate physlc . .!ly disabled workers. Those who do not work collect federal dts-

 

 

28 No Pity

ability and welfare checks, costing nearly $60 billion a year.

When other costs, such as medical treatment and rehabilitation

and lost productivity, are included, it is estimated that the cost

of disability to the nation runs $ I 70 billion a year. “It doesn’t

make sense to maintain people in a dependency state when those

people want to be productive, tax-paying citizens,” argues Jay

Rochlin, former director of the President’s Committee on Em-

ployment of People with Disabilities.

Rarely does a company say outright that it will not hire a

disabled person. Paul Steven Miller is a dwarf-he prefers to

describe himself as being of “short stature”-who graduated

near the top of his Harvard Law School class in 1986. While his

classmates quickly snared prestigious jobs, he was rejected by

each of the more than forty law firms where he interviewed.

Finally, an attorney in a Philadelphia firm explained that, al-

though the partners were impressed by his credentials, they

feared their clients might see Miller in the office hallway “and

think we’re running some sort of circus freak show.” Miller later

handled disability discrimination cases for the Los Angeles-

based Western Law Center for Disability Rights.

Even when disabled people have jobs, they earn far less than

their coworkers and are far less likely to be promoted. According

to a study by Syracuse University economist William Johnson,

this is the tesult of employers’ prejudices and their underestima-

tion of disabled workers-not because oflimits on the work that

disabled employees can do. Even after Johnson factored in things

such as the possibility of a disabled person’s lack of experience

or lowered productivity, disabled men, he found, still make 15

percent less than nondisabled coworkers. For women, there is a

30 percent difference. A 1989 Census Bureau survey supported

Johnson’s findings and concluded that the gap between the

earnings of disabled workers and their nondisabled coworkers is

growing. A disabled worker in 1987 made only 64 percent of

what his nondisabled colleagues earned. In 1980, it was 77

percent.

21)

Tiny TimJ, SupercripJ, and the End 0/ Pity .

In part, this discrepancy reflects employers’ fears about Im- . d’ bT hich remalO strongly roolee!

ing someone With a Isa I Ity, w . . . . . “,’ . h’b’tions against dlscnmlOatlOn lO hlflng dl~

despite recent pro I I . I

bl d I Ed ward Yelin, a professor of health poltcy at t 1e

a e peop e. .. . I

U . ‘t of California San Francisco, adds that persons Wll I

OlverSI y’ .’

d . bTties like those from minority races, constitute a con tlll- Isa I I , . h h ‘el)[

1 b e” When industnes retrenc , t ese contll1g gent a or lorce. .

workers are the first to lose their jobs. When there IS growth,

they are the last to be hired. ld for disabled people in The workplace is a haywire war

other ways as well. For one thing, a job may mean the loss (II

t · I health insutance and Social Secunty benefits. H1SlO-

essen la .1 . . . I I 1988 he burneu a LO]’)

rian Paul Longmore IS one examp e. n , . .’ ~ of his biography of George Washington outSide tbe Soctal,Se.-

. fflces in Los Angeles to protest the threat ro IllS b<::llc- cunty a . S . -I’ I· . d $ 575 monthl y SOCIal ecurtty ( It:( , fits. Longmore receive a . _ . , .

f state Medicaid that paid for IllS ventl-and $20,000 a year rom ..’ lator and the in-home attendant who helped him bve on IllS

. . h That money allowed hlln to own instead of lO a nurslOg orne. .

et his doctorate in American history and eventually wrtte die

gb’ h But the Social Security law was drawn up at a Wile 109 rap y. Id ~ver

when it was assumed that people like Longmore wou ne

work but would always need government assistance. For LOl1b – .’ I’ ncome-Social Secunty cltsabd II Y

more to make even mlO1ma I . . 11 d to have resources of more

income reCipients are not a owe , .

$ Id be taken as a sign that he was no longer

than 2 ooo-wou , . d f ‘d Since Longmore ex-

d’ bled and no longer lO nee 0 al . Isa d ke about $ 10 000 in royalties from the book over

pecte to rna’ . I

I he would lose all of his benefits yet still )(. III

severa years, k .1 l . f, h’ to wor anu )e a need of them. It simply did not payor 1m

. h . d – I 980s Congress has responded [() taxpayer. Smce t e ml, . of

I . ts by Longmore and others and rewrttten some comp alO I d’ bl d lJeOl}l ,,,I h h-22 rules. One new program ets lsa e L t ese catc health pblls

M d · ‘d-and denied insurance under company e Ical .’ d’ . pay the J\.fedicaid prc- because of their preexist 109 can loons-

 

 

3 0 No Pity

miums and hold on to their public health insurance. But work disincentives remain.

Disabling Images

Like any other emerging minority group, disabled people have

become sensitized to depictions of disability in popular culture,

religion, and history. There they find con~tant_descriptions of a disabled person’s proper role as either an object of pity or a

source of inspiration. These images are internalized by disabled

and nondisabled people alike and build social stereotypes, create

artificial limitations, and contribute to the discrimination and

minority status hated by most disabled people.

In the Old Testament, being blind, lame, deaf, crippled,

sick, or diseased is a sign of having done something to incur

God’s disfavor. Disability is brought on by sin. In the New

Testament, people with disabilities are cursed or possessed by

evil. Today, many of these traditional views remain in the

church. There are evangelical preachers who claim the power to

heal those with the proper faith, and the more commonplace

Sunday school stories cast the disabled as pitiable. Many

churches now make an effort to reach out to people with disabili-

ties, such as the United Methodist General Conference, which

revised its hymnal to delete “dumb,” “lame,” and other refer-

ences offensive to people with disabilities. Other churches and

synagogues, notes Ginny Thornburgh of the National Organiza-

tion on Disability, welcome disabled worshipers by installing

wheelchair ramps, buying large-print hymnals, or providing sign-language interpreters.

Portrayals in literature and popular culture, too, shape our

images of disability. Often a disabled character is depicted as

helpless and childish, like Tiny Tim in Charles Dickens’s “A

Christmas Carol,” and in need of cure or care from a nondisabled

person. But it was more common in classical literature (as it

Tiny Tims, Supercrips, and the End of Pity ,I often is today) for an author to exaggerate a disability as .Ill

emblem of a character’s “sinister, evil or morally flawed” natlllc:,

according to Kean College special education professor Arthllf

Shapiro. William Shakespeare, Shapiro notes, gave Richard III a

hunchback, even though the real king had no such disability 10

make more ominous and obvious his ability to murder ruth-

lessly. Shakespeare’s king speaks of being “deform’d, unfinislh el,

sent before my time,” of dogs barking at him because they were

frightened by his looks, and feeling “determined to pro\’L a

villain” because of his anger over his disability. Another sllch

villain is Herman Melville’s Captain Ahab, who has lost a leg l0

Moby Dick and his mind in a madly obsessive pursuit of re-

venge. These images undergird some of society’s deepest fears aud

prejudices about people with disabilities, says Shapiro in an

article co-written with Howard Margolis. “Lenny, the mentally

retarded character in Steinbeck’s Of Mice and Men who kilkd

living things-including a young woman-because he was 1111-

aware of his own strength, is an image that may very well be

involved in the minds of those who oppose group homes for lhe

developmentally disabled,” they write. And journalist Palll

Glastris speaks of the blow to his own self-image at finding

himself, at fourteen, living in a Shriners Hospital for Crippled

Children, being fitted for a prosthetic arm and discovering a

mural of the limbless and evil Captain Hook menacing the

pretty and good Wendy and Peter Pan. . The modern successor to these diabolical characters IS a

staple of horror movies. Freddy Krueger, the villain of th~ Night-

mare on Elm Street films, was turned into a hateful, sadIstic kd kr

because of his disfigurement, caused by a fire that left him Iu()re

monster than human being. Every movie season has its examples

of such fiendish disabled people, from the coldhearted banker in

a wheelchair in the I946 film It’s a Wonderful Life to Jack

Nicholson’s demented Joker, disfigured by a fall into a vat of

 

 

32 No Pity

acid, In 1989’s hit Batman, and Danny DeVito’s embittered

Penguin, abandoned by his parents when he was born with

flippers instead of arms in the 1992 sequel Batman Returns.

The precursor of the modern horror movie was the freak

show. Scholars of disability history debate whether the carnival

sideshows amounted to a crass exploitation of people with

disabilities or their glorification. Between the 1860s and early

1900s, disabled people were seen as marvels of nature, not. as

frightening freaks, argues Robert Bogdan, a Syracuse University

professor of special education. The well-appointed Victorian

home would have a photo album filled with pictures not only of

family members, statesmen, generals, and authors, but of Henry

“Zip the Pinhead” Johnson; General Tom Thumb, “the perfect

man in miniature”; Chang and Eng, the Siamese twins; or other

sideshow attractions. Bogdan argues that with the professional i-

zation of medicine, scientists, and then the public, stopped

celebrating these “human oddities,” and the freak shows died

out. Doctors in the new twentieth century decreed that these

freaks were no longer “benign curiosities” but “pathological”

and “diseased,” Bogdan argues. They became, he says, ” ‘sick’

and to be pitied.” Other scholars, including historian David

Gerber, claim that the willingness of dwarfs and others to be put

on display only shows the extreme extent of their victimization

and that other forces, like movies, brought about the end of the

freak show. One of the first horror films was the 1932 movie

Freaks, in which the circus sideshow attractions extract a bitter

and bloody revenge on a beautiful aerial artist and her lover, the

strongman.

Just as disabled people have begun protesting the power of

pictures on a charity telethon, they are objecting, too, to the way

they are portrayed in popular culture and the media. Language

has been one of the first battlegrounds. Disabled people resent

words that suggest they are sick, pitiful, childlike, dependent,

or objects of admiration-words that, in effect, convey the imag-

Tiny Tims, Supercrips, and the End of Pity ij

ery of poster children and supercrips. “Invalid” is out, as IS

“afflicted with” and “patient,” unless the person is really ill a

sickbed, or common adjectives such as “brave” and “coura-

geous,” since most disabled people are not seeking to be models

of inspiration. “Disabled” has become the usage of choice, replacing “hand-

icapped” in recent years and becoming the first word to emerge

by consensus from within the disability community itself. l’l’Jore

acceptable still is “person with a disability” (or “who is deaf,”

“who has mental retardation,” etc.), since it emphasizes the

individual before the condition. One of the most common at-

tacks on the disability movement is to mock the political I y

correct terms often used to describe disability. Yet it is alml’~[

always nondisabled people-relying on the stereotype that a

disabled person should be an inspiration overcoming some clhll-

lenge-who use prettifying euphemisms. Virtually no disabled

person uses these cute phrases. Concoctions like “the vertically

challenged” are silly and scoffed at. The “differently abled,” 1/.,:

“haridi-capable,” or the “physically and mentally challengL”!”

are almost universally dismissed as too gimmicky and too inclu-

sive. “Physically challenged doesn’t distinguish me frOlll a

woman climbing Mt. Everest, something certainly I’ll nL’ver

do,” says Nancy Mairs, an essayist and poet with multiple sclnu

sis. “It blurs the distinction between our lives.” Only by using

direct terminology, she argues, will people think about what it

means to be disabled and the accommodations she needs, sllch

as wheelchair-accessible buildings or grab bars in bathrooms.

Dianne Piastro, who writes the syndicated column “living

with a Disability,” complains that sllch terms suggest that diS-

ability is somehow shameful and needs to be concealed 111 a

vague generality. “It’s denying our reality instead of saying tilde

our reality, of being disabled, is okay,” says PiaslfO. Mary Juhll-

son, editor of The Disability Rag, complains that such euphemis-

tic terms come from nondisabled “do-gooders” who “wouldl,’t

 

 

34 No Pity

understand disability culture if we ran over their toes with a

wheelchair.” These words have “no soul” and “no power,” says

Johnson. “They’re like vanilla custard.”

Is there a word with the requisite soul power? There was a

surprise when Johnson’s magazine surveyed its readers. Newly in

o vogue among some physically disabled people is the very word

that is the ultimate in offensiveness to others: “cripple.” “It’s

like a raised gnarled fist,” says Cheryl Wade, a Berkeley, Califor-

nia, performance artist, who likes “crippled” because it is a blunt

and accurate description of her body, which has been twisted by

rheumatoid arthritis. “Crips,” “gimps,” and “blinks” have long

been for the exclusive, internal use by people of those disabili-

ties. (Terms for nondisabled people include “walkies” and

“a.b.s” for able-bodied and “TABs” for the “temporarily able-

bodied,” a you’ll-get-yours-yet reminder that disability hits

most of us in old age if not before.)

“Cripple” will not become safe for general usage right away,

but its newfound popularity shows that the stigma of disability

is being rejected and replaced with a pride in being identified

as disabled. Mairs, another who prefers “cripple,” compares the

change to the civil rights movement’s replacement of “Negro”

with “black.” In reclaiming “cripple,” disabled people are tak-

ing the thing in their identity that scares the outside world the

most and making it a cause to revel in with militant self-pride.

That disabled people are reappropriating words to redefine

themselves and thinking about “the power of negative lan-

guage,” says Brandeis University sociology professor Irving

Kenneth Zola, is a sign of a new and thriving group identity.

Language is not the only arena in which disabled people have

begun to appreciate the power of imagery to make or smash

stereotypes. With the disability rights movement’s emergence,

movies and television in the late 1980s and early 1990S began

to adopt more positive and realistic portrayals of disabled charac-

ters. Disability, after all, can make for compelling drama. Deaf

j)

Tiny TimJ, SupercripJ, and the End 0/ Pity

M I Mat lin won an Oscar in 1986 for her passion,1I e

actress ar ee ortrayal-and lyrical use of sign language-of a deaf stLIdult

:ho falls in love with her hearing teacher lO Chtldren of d Lei i.I

G d. In 1989, Dustin Hoffman won an Academy Award for 1m o 0 R’ A ·tor Dai1ld , f n autistic savant lO atnmall, ( representatIOn 0 a . fi I’ ,

L . n the same trophy the follOWIng year or liS

Day eWIS wo characterization of Irish writer and artist Christy Brown, wilu

,+, F I I Robert DeNlw W0l 1 had cerebral palsy, in My Le.Jt oot, n 199 ‘ , other film honors as a man in a postencephalitic trance lO rhe,

. Awnkenings based on the autobiographIcal account of movIe U’~ ! ‘d f

I g ist Oliver Sacks’s experiments in reachlOg a war u

neuro 0 “I ‘ ,’1 , h had become disabled during the s eeplOg Sll,-

patients w 0 ness” epidemic of 1916 through 192]· –

T I ., n which still loves sugary disability tales for oilS

e eVlSI0 , ‘ made-for-television movies, has nonetheless ~eveloped posltlle characters, particularly in longer-running senes. In 1989 Chlls Burke became the first television star with mental retardatIOn,

H plays Corky, the mildly retarded son who goes to malll- e , I I . “Life Goes On,” Marlee Madill

Streamed hIgh schoo c asses III , b “A d nondls- depicts a deaf attorney in “Reasonable Dou ts. n, abled actor Larry Drake plays Benny Stulwicz, the offIce ddl~

d ‘ . “L A Law” Such IS the power u

with mental retar atlOn III .’ . I d ‘ lied a local [(“tar-

I ., that a corporate perso nne Irector ca

te eVlSlOn “fi h’ dation agency to inquire if it had any “Bennys or Ire.

The most consistently positive portrayals have (orne, pLt .’ I from advertising. Few depictions have slw’

haps surpnslllg y”, ,

d Y ths of dependency and inability more qUIckly than the

tere m ” r n Bill DuPont television commercial featunng VIetnam, vete a

I . fI ted game of Demby, with twO prosthetic legs, p aylllg a Spl _ ,0 k S”I I a BudweIser (0111 b sketball on an urban blac top. Iml ar y, ,

aercial of a wheelchair marathoner with his fit an,d stun nll1

g m ‘d d ptlOns that to blonde lover helped tear down WI esprea assum be paralyzed is to be sexually dysfunctional. Kmart, Toyota,

, -, X IBM AT&T and many others 1.,l\e McDonald s, LeVI s, erox, ‘ ‘

 

 

No Pity

included disabled people in print and television ads, mixing

them in with nondisabled people, to give the positive image that they are just like anyone else.

That advertising would play such a corrective role bespeaks

the power of the disability rights movement: disabled people

have emerged as a consumer group. They are mighty in p~rt because of the millions of dollars they spend. As more disabled

people move into competitive jobs, they have more money to

spend. Another source of strength is simply their large numbers.

The Minneapolis-based Target department store chain put ‘i~s first model with mental retardation, a young girl with Down

syndrome, in a Sunday newspaper advertising insert in 1990 .

“That ad hit doorsteps at six A.M. Sunday and a half hour later

o:y phone was ringing,” recalls George Hite, the company’s

vIce-presIdent for marketing. “It was the mother of a girl with

Down syndrome thanking me for having a kid with Down

syndrome in our ad. ‘It’s so important to my daughter’s self-

image,’ she said.” That ad, one small picture among dozens in

the circular, generated over two thousand letters of thanks to stunned Target executives.

There is a new militancy, too, as people with disabilities

have come to recognize the strength of their numbers. Their

anger is often directed, in protests and economic boycotts, at

stereotypical depictions in movies and television. Members of

the San Francisco-based National Stuttering Project picketed

outside movie theaters showing A Fish Called Wanch in 1988,

and eventually got a letter from the film’s producer explaining

that a character who stutters in the film because of his repressed

anger was not to be taken as a portrayal of all people who stutter.

The National Stuttering Project argued that its members are

hurt by widespread assumptions that people stutter because of

shyness or some emotional disorder when in fact they are no

different psychologically from anyone else, and stuttering may

be more related to physiological or genetic conditions.

Tiny TimJ, SupercripJ, and the End of Pity )”7

Among the most stigmatizing media images are portrayals

of people with mental illnesses. On television, notes one study,

70 percent of such characters are depicted as violenL Yet only a

small number of people with schizophrenia, major depression,

manic depression and related disorders are dangerous and tlH)JC’

are almost always ones who have not received effective rl”c”l-

ment. The National Stigma Clearinghouse, a group of pelJlle

with such conditions, family members, professionals and re-

searchers, wages letter-writing campaigns and protests (kIt,

among other successes, have forced DC Comics to rewrite a pl<l(

to have Superman killed by a straitjacketed “lunatic” escaped

from an “interplanetary insane asylum” and got the New Y()lk

State Lottery to withdraw the promotion of its Crazy 8’s inslallt

lottery game. Similarly, in 1991, members of the National Federatiull of

the Blind protested outside of ABC network offices around Ille

country in complaint of a Mr. Magoo-like character in I he

slapstick sitcom “Good and Evil.” The blind character destroys

a chemistry laboratory by clumsily wielding his long white Cdne

and then woos a fur coat on a coatrack, mistaking it for a womdll.

After four major companies pulled their advertisements, the

network announced after only five episodes that the sho\’ \\ as

canceled. Some might dismiss such objections as a case of disabled

people having no sense of humor or being overly sensitive and

politically correct. “If we were at a point where blindness was

not regarded as a negative and if we had truly achieved eqllal

opportunity, then we could laugh and say this is not a re,J/lsric

portrayal of a blind person,” says federation official ] ames

Gashel. But for people with visual handicaps who face discflIlli-

. nation in everyday life and a 70 percent rate of unemploymellt,

contends Gashel, such depictions are dangerous. They confirm,

he says, every debilitating myth and stereotype that “people

hold to some degree to be true about blind people-that you

 

 

No Pity

won’t know what room you’re in until somebody tells you; you

won’t know a man from a woman unless you touch them; you’ll

break things, you’ll stumble over things; you cannot perform in

your profession competently; and that you can’t measure up in

competing with sighted people.”

Gashel’s unemployment figures for blind people are illus-

trated by the folly of the State Department in refusing to hire

Avraham Rabby, who passed the Foreign Service exam three

times with near-perfect scores, spoke four languages, and was

impeccably educated. But Foreign Service officials argued that

he needed to be able to see another person’s “body language” in

order to handle negotiations. Most ridiculous, complained the

Equal Employment Opporrunity Commission in 1987, was that

the State Department recruited disabled people like Rabby but

then refused to hire them. After four years of fighting, Rabby

was accepted into the diplomatic corps in 1991.

Fear, disabled people understand, is the strongest feeling

they ~licit from.[lof1djs~bled people. Fear underlies compassion for the poster child and celebration of the supercrip. After a

spinal cord tumor left him a paraplegic, anthropologist Robert

F. Murphy studied his condition through an ethnographer’s

eyes. Disabled people “contravene all the values of yourh, viril-

ity, activity and physical beauty that Americans cherish,” he

wrote in The Body Silent. “We are subverters of the American

Ideal, just as the poor are betrayers of the American Dream,”

argues Murphy. “The disabled serve as constant, visible remind-

ers to the able-bodied that the society they live in is a counterfeit

paradise, that they too are vulnerable. We represent a fearsome

possibility.” So society shields itself from this “fearsome possi-

bility” by distancing disabled people and treating them as social

inferiors.

When people insist on seeing him as either a supercrip, a

poster child, or an affront, says historian Paul Longmore, he

knows he represents their worst nightmare. Longmore walks

Tiny Tims, Supercrips, and the End 0/ Pity

slowly because his body was bent by childhood polio, and he

must use a ventilator at night. A stranger once approached him

on the street and said, “If I were you, I’d kill myself.” Usually,

people express such sentiments indirectly in overblown admir,t-

tion or pitying sympathy. In this case, the stranger’s tone made

it clear that the sight of a man with a severe disability was an

offense, implying that Longmore ought to take his advice.

The force of fear was evident in 1991 when Los Angeles

television news anchor Bree Walker Lampley got pregnant. Call-

in radio show host Jane Norris of KFI dedicated two hours to the

proposition that Walker Lampley was being morally irrespollsi-

ble by bringing a disabled child into the world. Walker Lampley

has a condition called ectrodactyly, a partial fusing of the bOlles

in the fingers and toes. It is a relatively minor disability. The

unconventional appearance of her hands did not impede her

professionally. Her condition did not even prevent her from

typing out news stories on a computer. Nor did it stop her from

being a good mother. Her daughter by a previous marriage also

had inherited ectrodactyly.

Whose business, then, was it that her child had a 50 percellt

chance of inheriting the same condition? “Face facts here, IIJVlllg

that sort of deformity is a strike against you in life. Peoplc judge

you by your appearance,” said talk-show host Norris, making

clear her own position. “By the shape of your hands, and lLe

shape of your body and the shape of your face. They just do. They

make value judgments about you. Whether it’s right or whether

it’s wrong, it just is. And there are so many options available-~

adoption, surrogate parenting …. It would be difficult to brillg

myself to morally cast my child forever to disfigured hand,,”

All the :prejudices\ that disabled people say srem fron} die

poster child and inspirational cripple images were on display III

Norris’s ugly call-in show. There was pity for a life of imagincd

misery. “It’s a horribly cruel thing to have the baby, knowing

it’s going to be deformed,” said one calier, Valerie from Mission

 

 

No Pity

Viejo. “If I were a child and I was going to grow up knowing

that my parents had me anyway, I think I would truly hate them

all their lives no matter how good they were to me.” There was

the idea, too, that a disabled person commands respect only to

the extent that he or she can be an object of inspiration. “I want

to know what her motive is for having this child,” demanded

Lisa of Costa Mesa. “What’s to guarantee that this child will be

as successful as the mother in overcoming this … ? Actually,

I think it’s kind of irresponsible.” There was the fear of a life not

worth living. “I would rather not be alive than have a disease like

that,” said Claire from Oceanside. ”I’m not talking perfection,

but this is ridiculous-no hands, no feet.” And there was the

notion that without cure there was no reason or right to live. “To

stop something like that, which is ~ery bad [~nd} not cU’rable, you have to start with reproduction,” added Kathy from El-

sinore. “And if you know the possibility exists, don’t have them

(babies}.”

Aaron James Lampley was born healthy. He, too, inherited

ectrodactyly. Walker Lampley brought a complaint-filed by

Paul Steven Miller, the Harvard Law School graduate who had

been refused jobs because of his short stature-against the radio

station with the Federal Communications Commission. The suit

ultimately failed, but Walker Lampley won the war with a

barrage of sympathetic national media coverage. Like most other

disabled people of her generation, “I was raised to just take it,”

she noted. “But I just can’t roll over and let this one fall into that

category. This is about my children and all children in the future

born with an unconventional appearance. This station was

spreading hatred. I felt I had to pick up the torch on this one.”

As the group identity of a younger generation of disabled people

grows, people like Walker Lampley are increasingly less tolerant

of bigotry. Like her, they are taking a stand for equality, inde-

pendence, and dignity.