On suffering and structural violence a view from below paul

On Suffering and Structural Violence: A View from Below
Paul Farmer
Race/Ethnicity: Multidisciplinary Global Contexts, Volume 3,
Number 1,
Autumn 2009, pp. 11-28 (Article)
Published by Indiana University Press
For additional information about this article
Access provided at 21 Jan 2020 21:06 GMT from UTSA
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https://muse.jhu.edu/article/368760
https://muse.jhu.edu/article/368760
autumn 2009 11
On Suffering and
Structural Violence:
A View from Below
Paul Farmer
veryone knows that suffering exists. The question is
how to define it. Given that each person’s pain has a
degreeof reality forhimorher that thepainof others
cansurelyneverapproach, iswidespreadagreementonthesub-
ject possible? Almost all of us would agree that premature and

painful illness, torture, and rape constitute extreme suffering.
Mostwouldalsoagree that insidiousassaultsondignity, suchas
institutionalized racismandsexism, also causegreat andunjust
injury.
Givenourconsensusonsomeof themoreconspicuous forms
of suffering, a number of corollary questions come to the fore.
Can we identify those most at risk of great suffering? Among
those whose suffering is not mortal, is it possible to identify
those most likely to sustain permanent and disabling damage?
Arecertain“event”assaults, suchas tortureor rape,more likely
to lead to late sequelae than are sustained and insidious suffer -
ing, such as the pain born of deep poverty or of racism? Under
this latter rubric, arecertain formsofdiscriminationdemonstra-
blymorenoxious thanothers?
Anthropologistswho take these as researchquestions study
both individualexperienceandthe larger socialmatrix inwhich
it is embedded in order to see how various large-scale social
forces come to be translated into personal distress and disease.
By what mechanisms do social forces ranging from poverty to
racismbecome embodiedas individualexperience?Thishasbeen
the focus of most of my own research in Haiti, where political
andeconomic forceshavestructuredrisk forAIDS, tuberculosis,
and, indeed,mostother infectiousandparasiticdiseases. Social
forces atwork therehavealso structured risk formost formsof
extremesuffering, fromhunger to tortureandrape.
©2009TheOhioStateUniversity/Office
ofMinorityAffairs/TheKirwan Institute
E
From Daedalus, 125:1 (Winter, 1996), pp. 251-283. @1996 by
the Ameri-
can Academy of Arts and Sciences. Reprinted with the

permission of
thepublisher,MITPress Journals.
Working in contemporaryHaiti,where in recent yearspolit-
ical violence has been added to the worst poverty in the hemi-
sphere,one learnsagreatdealabout suffering. In fact, thecoun-
tryhas longconstituteda sort of living laboratory for the study
of affliction, no matter how it is defined. “Life for the Haitian
peasant of today,” observed anthropologist Jean Weise some
twenty-five years ago, “is abject misery and a rank familiarity
with death.”1 The situation has since worsened. When in 1991
international health and population experts devised a “human
suffering index” by examining measures of human welfare
ranging from life expectancy to political freedom, 27 of 141
countries were characterized by “extreme human suffering.”
Only one of them, Haiti, was located in the Western hemi-
sphere. In only three countries in the world was suffering
judged to be more extreme than that endured in Haiti; each of
these three countries is currently in themidst of an internation-
ally recognizedcivilwar.
Suffering is certainly a recurrent and expected condition in
Haiti’s Central Plateau, where everyday life has felt like war.
“You get up in the morning,” observed one young widow with
four children, “and it’s thefight for foodandwoodandwater.”
If initially struck by the austere beauty of the region’s steep
mountainsandclementweather, long-termvisitors come to see
theCentralPlateau inmuch thesamemanneras its inhabitants:
a chalky and arid land hostile to the best efforts of the peasant
farmerswho livehere.Landlessness iswidespreadandso, con-
sequently, ishunger.All the standardmeasures revealhowten-
uous the peasantry’s hold on survival is. Life expectancy at
birth is less than fifty years, in large part because as many as
twoof every ten infantsdie before theirfirst birthday.Tubercu-

losis is the leading cause of death among adults; among chil -
dren,diarrhealdisease,measles, and tetanus ravage theunder-
nourished.
But the experience of suffering, it is often noted, is not effec -
tively conveyedbystatisticsorgraphs.The“texture”ofdireaf-
fliction isperhapsbest felt in thegrittydetailsofbiography,and
so I introduce the stories of Acéphie Joseph and Chouchou
Louis.2 The stories of Acéphie and Chouchou are anything but
“anecdotal.”For theepidemiologist aswell as thepolitical ana-
lyst, they suffered and died in exemplary fashion. Millions of
people living in similar circumstances can expect to meet simi-
lar fates. What these victims, past and present, share are not
personalorpsychological attributes—theydonot shareculture,
language, or race. Rather, what they share is the experience of
occupying the bottom rung of the social ladder in inegalitaria n
societies.3
Acéphie Joseph’s and Chouchou Louis’s stories illustrate
someof themechanisms throughwhich large-scale social forces
crystallize into the sharp, hard surfaces of individual suffering.
Suchsuffering is structuredbyhistoricallygiven (andofteneco-
nomically driven) processes and forces that conspire—whether
through routine, ritual, or, as is more commonly the case, these
race /ethnicity vol. 3 / no. 1 12
paul farmer
hard surfaces—to constrain agency.4 For many, including most
of my patients and informants, life choices are structured by
racism, sexism,political violence, andgrindingpoverty.
Acéphie‘s Story

For the wound of the daughter of my people is my heart
wounded,
I mourn, and dismay has taken hold of me.
Is there no balm in Gilead? Is there no physician there?
Why then has the health of the daughter of my people not been
restored?
O that my head were waters, and my eyes a fountain of tears,
that
I might weep day and night for the slain of the daughter of my
people!
—Jeremiah 8:22-9.1
Kay, a community of fewer than fifteen hundred people,
stretches along an unpaved road that cuts north and east into
Haiti‘s Central Plateau. Striking out from Port-au-Prince, the
capital, it can takeseveralhours to reachKay.The journeygives
one an impression of isolation, insularity. The impression is
misleading, as the village owes its existence to a project con-
ceived in the Haitian capital and drafted in Washington, D.C.:
Kay isa settlementof refugees, substantially composedofpeas-
ant farmers displaced more than thirty years ago by Haiti’s
largestdam.
Before1956, thevillageofKaywassituated ina fertilevalley,
andthrough it ran theRiviereArtibonite.Forgenerations, thou-
sands of families had farmed the broad and gently sloping
banksof the river, selling rice, bananas,millet, corn, andsugar-
cane in regional markets. Harvests were, by all reports, bounti -
ful; life there is now recalled as idyllic. When the valley was
flooded with the building of the dam, the majority of the local
population was forced up into the stony hills on either side of
the new reservoir. By all the standard measures, the “water
refugees” became exceedingly poor; the older people often
blame their poverty on the massive buttress dam a few miles
away, and bitterly note that it brought them neither electricity

norwater.
In1983,when Ibeganworking in theCentralPlateau,AIDS,
although already afflicting an increasing number of city dwell -
ers,wasunknowninmostareasas rural asKay.Acéphie Joseph
was one of the first villagers to die of the new syndrome. But
her illness,whichendedin1991,wasmerely the latest inastring
of tragedies that she and her parents readily linked together in
a long lamentation, by now familiar to those who tend the re-
gion’s sick.
The litany begins, usually, down in the valley hidden under
the still surface of the lake. Acéphie’s parents came from fami -
liesmakingadecent livingbyfarmingfertile tractsof land—their
“ancestors’gardens”—andsellingmuchof theirproduce.M. Jos-
eph tilled the soil, andhiswife, a tall andwearilyelegantwom-
an not nearly as old as she looked, was a “Madame Sarah,” a
autumn 2009 13
O N S U F F E R I N G A N D S T R U C T U R A L V I O L E
N C E: A V I E W F R O M B E L O W
market woman. “If it weren’t for the dam,” M. Joseph assured
me, “we’d be just fine now. Acéphie, too.” The Josephs’ home
was drowned along with most of their belongings, their crops,
and thegravesof their ancestors.
Refugees fromthe risingwater, the Josephsbuilt amiserable
lean-to on a knoll of high land jutting into the new reservoir.
They remained poised on their knoll for some years; Acéphie
and her twin brother were born there. I asked them what in-
duced them to move up to Kay, to build a house on the hard
stone embankment of a dusty road. “Our hut was too near the

water,” replied M. Joseph. “I was afraid one of the children
would fall into the lake and drown. Their mother had to be
away selling; I was trying to make a garden in this terrible soil.
Therewasnoone tokeepaneyeon them.”
Acéphie attended primary school—a banana-thatched and
open shelter in which children and young adults received the
rudiments of literacy—in Kay. “She was the nicest of the
Joseph sisters,” recalled one of her classmates. “And she was
as pretty as she was nice.” Acéphie’s beauty and her vulnera-
bilitymayhave sealedher fate as early as 1984. Thoughstill in
primary school, she was already nineteen years old; it was
time for her to help generate income for her family, which was
sinkingdeeperanddeeper intopoverty.Acéphiebegan tohelp
her mother by carrying produce to a local market on Friday
mornings. On foot or with a donkey it takes over an hour and
a half to reach the market, and the road leads right through
Peligre, the site of the dam and, until recently, a military bar -
racks.The soldiers liked towatch theparadeofwomenonFri-
day mornings. Sometimes they taxed them with haphazardly
imposed fines; sometimes they taxed them with flirtatious
banter.
Such flirtation is seldom unwelcome, at least to all appear -
ances. In rural Haiti, entrenched poverty made the soldiers—
the region’s only salaried men—ever so much more attractive.
Hunger was again a near-daily occurrence for the Joseph fam-
ily; the timeswereasbadas those right after thefloodingof the
valley. And so when Acéphie‘s good looks caught the eye of
Captain Jacques Honorat, a native of Belladere formerly sta-
tioned inPort-au-Prince, she returnedhisgaze.
Acéphieknew,asdideveryone in thearea, thatHonorathad
a wife and children. He was known, in fact, to have more than
one regular partner. But Acéphie was taken in by his persis-
tence, andwhenhewent to speak toherparents, a long-termli-

aisonwas, fromtheoutset, seriously considered:
What would you have me do? I could tell that the old people
wereuncomfortable,worried;but theydidn’t sayno.The ydidn’t
tell me to stay away from him. I wish they had, but how could
they have known? ... I knew it was a bad idea then, but I just
didn’t know why. I never dreamed he would give me a bad ill -
ness, never! I looked around and saw how poor we all were,
how the old people were finished ... What would you have me
do? Itwasawayout, that’showI sawit.
paul farmer
AcéphieandHonoratwere sexualpartnersonlybriefly—for
less thanamonth,accordingtoAcéphie.Shortly thereafter,Hon-
orat fell illwithunexplained fevers andkept to the companyof
his wife in Peligre. As Acéphie was looking for a moun prensi -
pal—a“mainman”—she tried to forgetabout thesoldier. Still, it
was shocking to hear, a few months after they parted, that he
wasdead.
Acéphie was at a crucial juncture in her life. Returning to
school was out of the question. After some casting about, she
went to Mirebalais, the nearest town, and began a course in
what she euphemistically termed “cooking school.” The school
—really just an ambitious woman’s courtyard—prepared poor
girls likeAcéphie for their inevitable turnas servants in thecity.
Indeed, domestic service was one of the rare growth industries
inHaiti, andasmuchasAcéphie’sproudmotherhated to think
of her daughter reduced to servitude, she could offer no viable
alternative.
And so Acéphie, at age twenty-two, went off to Port-au-

Prince, where she found a job as a housekeeper for a middle-
class Haitian woman working for the U.S. embassy. Acéphie’s
looksandmannerskeptheroutof thebackyard, the traditional
milieu of Haitian servants: she was designated as the maid
who, in addition to cleaning, answered the door and the tel -
ephone. Although Acéphie was not paid well—she received
$30 each month—she tried to save a bit of money for her par-
ents and siblings, recalling the hunger gnawing at her home
village.
Still looking foramounprensipal,AcéphiebeganseeingBlan-
coNerette, ayoungmanwithorigins identical toherown:Blan-
co’sparentswerealso“water refugees”andAcéphiehadknown
himwhentheywerebothattending theparochial school inKay.
Blanco had done well for himself, by Kay standards: he chauf-
feureda small busbetween theCentral Plateauand the capital.
In a setting characterized by an unemployment rate of greater
than 60 percent, his job commanded considerable respect. He
easily won the attention of Acéphie. They planned to marry,
andstartedpooling their resources.
Acéphie had worked as a maid for over three years when
shediscovered that shewaspregnant.Whenshe toldBlanco,he
becameskittish.Norwasheremployerpleased: it is considered
unsightly to have a pregnant servant. So Acéphie returned to
Kay, where she had a difficult pregnancy. Blanco came to see
heronceor twice; theyhadadisagreement, and then sheheard
nothing fromhim.Following thebirthofherdaughter,Acéphie
was sapped by repeated infections. She was shortly thereafter
diagnosedwithAIDS.
Soon Acéphie’s life was consumed with managing drench-
ing night sweats and debilitating diarrhea, while attempting to
care for her first child. “We both need diapers now,” she re-
marked bitterly towards the end of her life, faced each day not

only with diarrhea, but also with a persistent lassitude. As she
became more and more gaunt, some villagers suggested that
autumn 2009 15
Acéphie was the victim of sorcery. Others recalled her liaison
with the soldier and her work as a servant in the city, both lo-
cally considered risk factors for AIDS. Acéphie herself knew
that shehadAIDS,althoughshewasmoreapt to refer toherself
as suffering from a disorder brought on by her work as a ser -
vant: “All that ironing, and thenopeninga refrigerator.”
But this isnot simply the storyofAcéphieandherdaughter.
There is JacquesHonorat’sfirstwife,whoeachyeargrows thin-
ner.AfterHonorat’sdeath, she foundherselfdesperate,withno
means of feeding her five hungry children, two of whom were
also ill. Her subsequent union was again with a soldier. Hono-
rat had at least two other partners, both of them poor peasant
women, in theCentralPlateau.One isHIVpositiveandhas two
sickly children. Blanco is still a handsome young man, appar -
ently in good health and plying the roads from Mirebalais to
Portau-Prince. Who knows if he carries the virus? As an attrac-
tivemanwithapaying job,hehasplentyofgirlfriends.
Nor is this simply the story of those infected with the virus.
ThepainofMme. JosephandAcéphie‘s twinbrotherwasman-
ifestly intense, but few understood the anguish of her father.
ShortlyafterAcéphie‘sdeath,M. Josephhangedhimself.
Chouchou‘sStory
“History shudders, pierced by events of massive public

suffering.
Memory is haunted, stalked by the ghosts of history’s victims,
capriciously severed from life in genocides, holocausts, and
exter-
mination camps. The cries of the hungry, the shrieks of political
prisoners, and the silent voices of the oppressed echo slowly,
painfully through daily existence.”
—Rebecca Chopp,ThePraxisof Suffering
Chouchou Louis grew up not far from Kay in another small
village in the steep and infertile highlands of Haiti’s Central
Plateau. He attended primary school for a couple of years but
was obliged to drop out when his mother died. Then in his
early teens, Chouchou joined his father and an older sister in
tending their hillside gardens. In short, there was nothing re-
markable about Chouchou’s childhood; it was brief and harsh,
likemost in ruralHaiti.
Throughout the 1980s, church activities formed Chouchou’s
sole distraction. These were hard years for the Haitian poor,
beatendownbya familydictatorshipwell into its thirddecade.
The Duvaliers, father and son, ruled through violence, largely
directedatpeoplewhoseconditionsofexistenceweresimilar to
that of Chouchou Louis. Although many of them tried to flee,
oftenbyboat,U.S.policymaintained thatHaitianasylum-seek-
ers were “economic refugees.” As part of a 1981 agreement be-
tween the administrations of Ronald Reagan and Jean-Claude
Duvalier, refugees seized on the high seas were summarily re-
turned to Haiti. During the first ten years of the accord, 24,559
Haitians applied forpolitical asylumin theUnitedStates; eight
applicationswereapproved.
paul farmer

AgrowingHaitianpro-democracymovement led, inFebru-
ary 1986, to the flight of Duvalier. Chouchou Louis must have
been about twenty years old when “Baby Doc” fell, and he
shortly thereafter acquired a small radio. “All he did,” recalled
hiswifeyears later, “waswork the land, listen to the radio, and
go to church.” It was on the radio that Chouchou heard about
thepeoplewhotookoverafterDuvalierfled.Likemany inrural
Haiti, Chouchou was distressed to hear that power had been
handed to themilitary, ledbyhardened duvaliéristes. Itwas this
army that the U.S. government, which in 1916 had created the
modernHaitianarmy, termed“Haiti’s best bet fordemocracy.”
In the eighteen months following Duvalier’s departure, over
$200million inU.S. aidpassed through thehandsof the junta.
In early 1989, Chouchou moved in with Chantal Brise, who
was pregnant. They were living together when Father Jean-
Bertrand Aristide—by then considered the leader of the pro-
democracy movement—declared his candidacy for the presi-
dency in the internationally monitored elections of 1990. In
Decemberof that year almost 70percentof thevoters choseFa-
therAristide fromafieldof tenpresidential candidates.
Like most rural Haitians, Chouchou and Chantal welcomed
Aristide’s election with great joy. For the first time, the poor —
Haiti’s overwhelming majority, formerly silent—felt they had
someone representing their interests in the presidential palace.
These are the reasons why the military coup d’etat of Septem-
ber 1991 stirred great anger in the countryside, where the ma-
jority of Haitians live. Anger was soon followed by sadness,
then fear, as the country’s repressive machinery, dismantled
during the seven months of Aristide’s tenure, was hastily re-
assembledunder thepatronageof thearmy.
In themonthafter thecoup,Chouchouwassitting ina truck

en route to the town of Hinche. Chouchou offered for the con-
sideration of his fellow passengers what Haitians call a pwen, a
pointed remark intended to say something other than what it
literally means. As they bounced along, he began complaining
about the conditions of the roads, observing that, “if things
were as they should be, these roads would have been repaired
already.” One eyewitness later told me that at no point in the
commentary was Aristide’s name invoked. But Chouchou’s
complaints were recognized by his fellow passengers as veiled
languagedeploring thecoup.Unfortunately forChouchou,one
of the passengers was an out-of-uniform soldier. At the next
checkpoint, the soldier had him seized and dragged from the
truck. There, a group of soldiers and their lackeys—their at-
tachés, to use the epithet then in favor—immediately began
beatingChouchou, in frontof theotherpassengers; theycontin-
ued to beat him as they brought him to the militarybarracks in
Hinche.Ascar onhis right templewasa souvenir of his stay in
Hinche,which lasted severaldays.
Perhaps the worst after-effect of such episodes of brutality
was that, ingeneral, theymarked thebeginningofpersecution,
not theend. In ruralHaiti,during this time, anyscrapewith the
autumn 2009 17
law (i.e., the military) led to blacklisting. For men like Chou-
chou, staying out of jail involved keeping the local attachés
happy, andhedid thisbyavoidinghishomevillage.ButChou-
chou lived in fear of a second arrest, his wife later told me, and
his fearsproved tobewell-founded.

On January 22, 1992, Chouchou was visiting his sister when
he was arrested by two attachés. No reason was given for the
arrest, and Chouchou’s sister regarded as ominous the seizure
of the young man’s watch and radio. He was roughly marched
to the nearest military checkpoint, where he was tortured by
soldiersandtheattachés.Onearea resident later toldus that the
prisoner’s screamsmadeher childrenweepwith terror.
OnJanuary25,Chouchouwasdumped inaditch todie.The
army scarcely took the trouble to circulate the canard that he
had stolen some bananas. (The Haitian press, by then thor-
oughly muzzled, did not even broadcast this false version of
events.) Relatives carried Chouchou back to Chantal and their
daughter under the cover of night. By early on the morning of
January 26, when I arrived, Chouchou was scarcely recogniz-
able. His face, and especially his left temple, was misshapen,
swollen, and lacerated; his right temple was also scarred. His
mouth was a pool of dark, coagulated blood. His neck was pe-
culiarly swollen, his throat collaredwithbruises, the tracesof a
gun butt. His chest and sides were badly bruised, and he had
several fractured ribs.Hisgenitalshadbeenmutilated.
That was his front side; presumably, the brunt of the beat-
ings came from behind. Chouchou’s back and thighs were
stripedwithdeep lashmarks.Hisbuttocksweremacerated, the
skinflayeddownto theexposedglutealmuscles. Someof these
stigmataappeared tobe infected.
Chouchou coughed up more than a liter of blood in his ago-
nalmoments.Givenhis respiratorydifficulties and theamount
ofbloodhecoughedup, it is likely that thebeatingscausedhim
tobleed, slowlyatfirst, thencatastrophically, intohis lungs.His
head injuries had not robbed him of his faculties, although it
mighthavebeenbetter forhimhad theydone so. It tookChou-
chou threedays todie.

ExplainingVersusMakingSenseof Suffering
The pain in our shoulder comes
You say, from the damp; and this is also the reason
For the stain on the wall of our flat.
So tell us:
Where does the damp come from?
—Bertholt Brecht
Are these storiesof sufferingemblematicof somethingother
than twotragicandprematuredeaths? If so,howrepresentative
is each of these experiences? Little about Acéphie’s story is
unique; Ihave told it indetail because it brings into reliefmany
of the forces constraining not only her options, but those of
mostHaitianwomen.Such, inanycase, ismyopinionafter car-
paul farmer
ing for dozens of poor women with AIDS. There is a deadly
monotony in their stories: young women—or teenaged girls—
who were driven to Port-au-Prince by the lure of an escape
fromtheharshestpoverty;once in thecity, eachworkedasado-
mestic; nonemanaged tofindfinancial security.Thewomen in-
terviewedwere straightforwardabout thenonvoluntaryaspect
of their sexual activity: in their opinions, they had been driven
into unfavorable unions by poverty.5 Indeed, such testimony
shouldcall intoquestion facilenotionsof “consensual sex.”
What about the murder of Chouchou Louis? International
human rights groups estimate that more than three thousand
Haitians were killed in the year after the September 1991 coup

that overthrewHaiti’s first democratically elected government.
Nearlyallof thosekilledwerecivilianswho, likeChouchou, fell
into the hands of military or paramilitary forces. The vast ma-
jority of victims were poor peasants, like Chouchou, or urban
slum dwellers. (The figures cited here are conservative esti -
mates; I am quite sure that no journalist or observer ever came
to count thebodyofChouchouLouis.)6
Thus, the agony of Acéphie and Chouchou was, in a sense,
“modal” suffering. InHaiti,AIDSandpoliticalviolenceare two
leading causes of death among young adults. These afflictions
werenot the resultofaccidentorof forcemajeure; theywere the
consequence,director indirect, ofhumanagency.When theAr-
tibonite Valley was flooded, depriving families like the Josephs
of their land,ahumandecisionwasbehind it;when theHaitian
army was endowed withmoney and unfettered power, human
decisions were behind that, too. In fact, some of the same deci -
sion-makersmayhavebeen involved inbothcases.
If bureaucrats and soldiers seemed to have unconstrained
swayover the livesof the ruralpoor, theagencyofAcéphieand
Chouchou was, correspondingly, curbed at every turn. These
grim biographies suggest that the social and economic forces
that have helped to shape the AIDS epidemic are, in every
sense, the same forces that led to Chouchou’s death and to the
larger repression in which it was eclipsed. What is more, both
were “at risk” of such a fate long before they met the soldiers
who altered their destinies. They were both, from the outset,
victimsof structuralviolence.
While certainkindsof sufferingare readilyobservable—and
thesubjectof countlessfilms,novels, andpoems—structuralvi-
olence all too often defeats those who would describe it. There
areat least three reasonswhythis is so.First, there is the“exoti -
cization” of suffering as lurid as that endured by Acéphie and
Chouchou. The suffering of individuals whose lives and strug-

gles recall ourowntends tomoveus; thesufferingof thosewho
aredistanced,whetherbygeography,gender, “race,”orculture,
is sometimes less affecting.
Second, there is the sheer weight of the suffering, which
makes it all the more difficult to render: “Knowledge of suffer -
ing cannot be conveyed in pure facts and figures, reportings
that objectify the suffering of countless persons. The horror of
autumn 2009 19
suffering is not only its immensity but the faces of the anony-
mousvictimswhohave littlevoice, let alone rights, inhistory.”7
Third, the dynamics and distribution of suffering are still
poorly understood. Physicians, when fortunate, can alleviate
the sufferingof the sick.But explaining itsdistribution requires
moreminds,more resources.Case studiesof individuals reveal
suffering, they telluswhathappens tooneormanypeople; but
to explain suffering, one must embed individual biography in
the largermatrixof culture, history, andpolitical economy.
In short, it is one thing tomake senseof extremesuffering—
auniversal activity, surely—andquiteanother toexplain it.Life
experiences such as those of Acéphie and Chouchou—who as
Haitians living in poverty shared similar social conditions—
mustbeembedded inethnography if their representativeness is
to be understood. These local understandings are to be embed-
ded, in turn, in the larger-scale historical system of which the
fieldworksite is apart.8 Thesocial andeconomic forces thatdic -
tate life choices in Haiti’s Central Plateau affect many millions

of individuals, and it is in the context of theseglobal forces that
the suffering of individuals receives its appropriate context of
interpretation.
Similar insights are central to liberation theology, which
takes the suffering of the poor as its central problematic. In The
Praxis of Suffering, Rebecca Chopp notes that, “In a variety of
forms, liberation theologyspeakswith thosewho, throughtheir
suffering, call into question the meaning and truth of human
history.”9 Unlike most previous theologies, and unlike much
modern philosophy, liberation theology has attempted to use
social analysis tobothexplainanddeplorehumansuffering. Its
key texts bring into relief not merely the suffering of the
wretchedof the earth, but also the forces thatpromote that suf-
fering.The theologianLeonardoBoff, in commentingononeof
these texts, notes that it “moves immediatel y to the structural
analysis of these forces and denounces the systems, structures,
and mechanisms that ‘create a situation where the rich get
richer at theexpenseof thepoor,whoget …
Catastrophe, Caregiving and Today’s
Biomedicine
Arthur Kleinman and Bridget Hanna
Department of Anthropology, William James Hall, 33 Kirkland
Street, Cambridge, MA 02138, USA
E-mail:[email protected]
Abstract
Many factors, including the increasing commercialization of
biomedicine, have caused medical

practice to be increasingly divorced from the practice of
caregiving. In this article, the authors
argue that the two must be reunited in multiple ways if we are
to have a just and compassionate
healthcare and medical practice.
Keywords Biomedicine, Caregiving, Health Crisis, Medical
Ethics, Social Suffering
The blindness of biomedicine
Pablo Picasso painted an evocative piece entitled The head of a
medical student (Figure 1).1
This picture’s distinguishing attribute is an African mask-like
head with one eye closed and
the other wide open. The juxtaposition of an open eye and
closed eye creates the sense of
tension so characteristic of medical students. One eye is open to
the world of pain and suf-
fering; the other shut tight, perhaps to protect the self from too
much adversity, or perhaps
to serve the self-interest of the budding physician. Picasso’s
myopic medical student can
point us towards the newer blind spots we find within medical
education and medical
practice. Beyond the protection of self and self-interest and the
issue of institutional

indoctrination there are other barriers to an ethical medical
practice, including the accele-
rated biologization and commercialization of medicine and
genetics, the hype surrounding
Arthur Kleinman is the Esther and Sidney Rabb Professor of
Anthropology at Harvard University. Since 1968,
Kleinman, who is both a psychiatrist and an anthropologist, has
conducted research in Chinese society on mental
illness and violence. His chief publications are What really
matters (2006), Writing at the margin (1995), Rethinking
psychiatry (1988), The illness narratives (1988), Social origins
of distress and disease: Neurasthenia, depression and
pain in modern China (1986) and Patients and healers in the
context of culture (1980). His current work and forth-
coming book deal with care and caregiving.
Bridget Hanna is a PhD candidate in medical anthropology and
media anthropology at Harvard University. She
works in India on issues of medical expertise in relation to
environmental illness, and on the sociopolitical effects
of chemical and medical contamination. She is founder and
director of the online archival project, The Bhopal mem-
ory project, and is co-editor of the 2004 anthology The Bhopal
reader. Hanna is also an activist and a film-maker.
Her first short film ‘This much I know’ debuted in film festivals
in 2008.
1 Kleinman comments on this picture in more detail in What
really matters: Living a moral life amidst uncertainty
and danger (New York: Oxford University Press, 2006).
287

BioSocieties (2008), 3, 287–301 ª London School of Economics
and Political Science
doi:10.1017/S1745855208006200
pharmaceutical panaceas, and the worsening specialization of
medical training. What we
find is, increasingly, a radical division between the work of
medicine and the work of
care and caregiving.
Why biomedicine and caregiving? Although the delegation of
caregiving work to nurses
and others has long been standard practice, the professional
practice of medicine, the proli-
feration of medical technology and the exigencies of the
healthcare industry have been push-
ing doctors even further from the intimate engagement with
another’s suffering that is
inherent in the labor of taking care of another human. The many
advances in the biosciences
have by no means eliminated pain, disability and illness. On the
contrary, advances in health
have drawn out the end of life and more people now live to
develop a long-term disease or
chronic condition. The uncertainty that makes each of us

constantly vulnerable to incapacity
Figure 1. Pablo Picasso, Head of the medical student (study for
Les Demoiselles d’ Avignon), 1907 gouache
and watercolor on paper, 60.3 · 47 cm. Digital image ª 2008.
The Museum of Modern Art/Scala, Florence.
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A R T H U R K L E I N M A N A N D B R I D G E T H A N N
A
has in fact never been far away—yet medicine does not require
of its practitioners that they
engage this directly. And even though technological approaches
have radically individua-
lized bodies as sources of genetic information and targets of
designer drugs, they have
also further alienated medical doctors into lucrative specialties,
business models and techno-
logies, and away from the work of caring that we believe is
central to healing and amelior-
ating the debility that cannot be healed.
Biomedicine’s increasing willingness to give up caregiving as a
practice and preoccupa-
tion, and its almost total fixation on technology-driven
diagnosis and intervention, indicates

that biomedicine is less and less a site for caregiving. It has
been pulled further away from
the needs of its clients and is increasingly organized around the
cultural, economic and polit-
ical power of institutionalized science and technology. The
crisis in caregiving makes it clear
that the business and bureaucratic models that govern this
apparatus have estranged it from
the people it is supposed to serve, exacerbating forms of social
suffering. This is evidence of
the implacable progression of technical rationality within a
political economy and global
culture that is organized around technology as the driver of
medicine. We can, in fact see
the crisis of our contemporary world visualized through the
increasing alienation sympto-
matic of the professionalization of medicine.
One of the major themes of this article is the existence of social
suffering and the obsta-
cles to its relief. These include major processes—such as the
way that bureaucracy inter-
venes in caregiving and the way that in this culture we’ve split
social policy from health

policy. Even though today there is increased concern regarding
the political economy of
health and the social roots of disease, we don’t think that nearly
enough has been done to
investigate the ways that social responses to policy and
programs can actually worsen health
outcomes and become obstacles to effective interventions that
involve not just the bureau-
cracy and not just the business models, but the very way that the
profession has developed.
The commercialization of knowledge is just one of the
persistently negative effects of a
reductionistic materialism that has come to thoroughly dominate
the profession, blinding
it to the needs of patients.
We believe the medical system has much to learn and give in
engaging with those who do
play central roles in caregiving: namely women, the elderly and
the marginalized groups that
dominate home healthcare delivery systems. We believe that by
engaging more centrally in
the practice of caregiving the helping professions (medicine,
nursing, social work, etc.) can
be liberated from a narrow technical perspective in order to play

a more prosocial role in the
moral activities that enhance human experience.
In this article we ask about the moral condition and ethical
orientation of medicine in
relation to this schism, and about the consequences of the
separation of medicine and
caregiving. We approach the relationship between medicine and
caregiving in multiple
and reiterative ways, attempting repeatedly to understand how
they have become estranged,
how they can be united, and why they must be kept together.
These questions are not
straightforward—thus we have chosen a format that extends
from the local to the global,
from the deeply personal to the political in a series of
movements that illustrate what we
see as the pressing need to orchestrate a fundamental change in
the way that medicine is
practiced, taught and understood. Caregiving, for us, is a vivid
and urgent lens through
which the impoverishment of contemporary biomedical models
becomes obvious, and
perhaps more importantly, another type of engagement can be
imagined.

C A T A S T R O P H E , C A R E G I V I N G A N D T O D A
Y ’ S B I O M E D I C I N E j
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289
In the first movement, we will lay out the current status of
caregiving and catastrophe,
our own personal engagement with these themes, and what
medicine has to learn, or
relearn. In the second, we will discuss caregiving acts by
individuals as a type of ‘anti-
heroism’, all the more important for both doctors and lay
persons at a time when the
hype and commercialization around health and illness would
have us believe that suffering
is an aberration rather than a human condition. In the third
movement we discuss the med-
ical humanities and the critique they offer to medical education.
In our final movement, we
move up in scale, looking at the new model of global health and
its engagement with social
suffering as an example of a biomedical model that succeeds
because it integrates caring into
praxis.

In this article we do not simply want to draw attention to the
limitations of the standard
model of biomedicine, but more precisely we want to show how
prosocial activities—of
which caregiving is a prime example—are crucial aspects of
how local worlds are made
and how increasingly global and cross-cultural practice can and
must help us understand
and change this dysfunctional model. To begin with, we see
caregiving as a fundamentally
human interaction that can produce powerful relationships and
enhance communities, and
therefore needs to be understood in its own right.
Things as they are
Aside from skilled nursing, rehabilitation efforts by physical
therapists and occupational
therapists, and the practical assistance of social workers and
home health aides, caregiving,
especially for victims of health catastrophes and end-stage
conditions, can be very discon-
nected from medicine. Caregiving is primarily a matter of
families, close friends and the
afflicted individuals themselves. It is they who struggle with the

activities of daily living
such as bathing, feeding, toileting, dressing, and who spend the
long hours of working
around, through and with pain, functional limitations, memory
loss, agitation and the
many other difficult realities of the most serious health
problems.
To illustrate this point, we draw on our personal life stories and
experiences of care-
giving. We draw on personal stories because they loom large for
us, and also because their
proximity is indicative. Caregiving is a necessity that can arise
in anyone’s life. Kleinman
has had his life transformed by taking on the role of primary
caregiver for his wife, Joan
Kleinman, who is suffering from a severe neurodegenerative
disorder that has affected her
memory, motor functions and restricted her independence. He
wakes her up in the morning,
and assists her in toileting, bathing and dressing. He makes
their breakfast and helps her
feed herself. He assists her in walking, placing her in a chair,
and in their car. He is with
her nearly all the time, protecting her from injuring herself

because she can neither see
nor navigate safely either on the street or in their own home. He
reads the newspaper and
books to her, explains stories on the TV, selects music for her
to listen to, and makes tele-
phone calls for her to their children and grandchildren. He
prepares lunch and dinner and
helps her eat; and he does all the things required to get her
ready to go to bed at night.
Of course, their children, his mother, his brother and others call
and help when they are
able, and several times a week they are assisted by a
professional home healthcare helper
who does the wash, cooks several meals and spends the day-
time hours with Joan.
290 j
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Joan herself does as much as she is able to do. She rarely
complains and, with the excep-
tion of occasional agitation that is beyond her control, she
struggles to enjoy life, and usu-

ally succeeds in doing so. In this and several even more crucial
ways she is her own
caregiver. She keeps up her part in conversations, emotional
exchanges and moral relation-
ship. While it is greatly disturbing to witness a once elegant,
intellectually lively and highly
independent companion of over four decades deteriorate,
emotional reactions from frustra-
tion and anger to sadness have been cushioned and sublimated
by their work together, the
long rhythm of their days together, and most of all by the
support of family and close
friends. That ‘support’ is as much a part of caregiving as all the
mundane practices we
have listed, and amounts to moral solidarity with their struggle
and concern and responsib-
ility for them. Without it, it is hard to imagine how they as a
couple would be able to endure
and go forward.
Bridget Hanna’s life was also touched by the need for
caregiving. At the age of 17 her
sister Molly Hanna, three years her junior, was diagnosed with
stage four neuroblastama,
a very aggressive pediatric cancer. Hanna’s parents asked her to

leave university to return
home and help with caregiving for Molly. While she was never
the primary caregiver for
her sister, she witnessed and assisted in the labor of four years
of intensive and toxic
treatments, life-affirming healing and intense suffering. Though
the cost was often high—
particularly on their mother who shouldered the primary
burden—the practice of caregiving
created entirely new communities of friends and healers around
Molly. When the ultimately
tragic end came, Molly left behind a group of people who were
stunned and grief-stricken
by her death, but also transformed by their physical connection
to her, her illness and her
struggle.
We give you these highly personal sketches because it is the
best we can do to illustrate
what caregiving entails, and why it is so crucial to all of our
lives and the human condition
more generally. Caregiving, as illustrated by our cases, is about
acknowledgment, concern,
affirmation, assistance, responsibility, solidarity, and all the
emotional and practical acts

that enable life. Caregiving also includes what happens when
hope and consolation are
abandoned, when theodicy is ended, and when all there is to do
is to be present with the suf-
ferer, sharing his/her suffering by simply and usually silently
just being there. There is a
painting that once upon a time hung in Children’s Hospital in
Boston; the sun is rising,
an exhausted pediatrician, in the pre-antibiotic era, holds the
hand of a child who has just
passed through crisis and lysis of a fever. This too is
caregiving. Caregiving is interpersonal
experience, the concern and compassion of the healer, the
response of the carereceiver, and,
in a larger sense, love.
So, what is the status of caregiving for health catastrophes and
other serious conditions
in biomedicine today? While medical educators will claim that
caregiving is still central to
what it means to be a physician, and will point to courses and
practitioners that teach the
art of caregiving to students, the on-the-ground reality is much
more uncertain and fragile.

Most physicians, outside of primary care providers, do little in
the way of hands-on caregiv-
ing. Hospice doctors are caregivers; and physicians who
routinely deal with end-of-life, such
as oncologists and cardiologists and nephrologists and
gerontologists, are surrounded by
caregiving opportunities, yet few participate in the nitty-gritty
of caregiving—leaving the
practical assistance and emotional tasks to nurses, social
workers and the patient and his/her
network of support. In medical school, the curriculum in both
the basic science and clinical
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291
clerkship years places the great emphasis on understanding
disease processes and high-
technology treatments. The illness experience gets less and less
pedagogic attention as the
student progresses from classroom to inpatient ward and clinic.
And in the broader system
of healthcare, students can all-too-readily discern that medicine
largely leaves caregiving to

others. Those others include nurses, whose professional science
has made caregiving a cent-
ral element of knowledge production and training. Yet this
knowledge is largely unavailable
to young physicians and medical students, and is provided as a
sidenote rather than a
foundation. Its association with a lower status profession
perhaps even gives it something
of a stigmatized status. It is notable that caregiving still has a
strong gender bias. Most
caregivers are women. And historically and cross-culturally this
is even more impressively
true. Yet the increasing number of women in medicine has not
changed the situation.
What is particularly true of our time, and especially in our own
society, is that the structure
of service delivery and the funding of health services work to
discourage professionals from
the art of caregiving and can in fact undermine the
practitioner’s efforts. Part of the mistrust
of doctors is the growing sense that they seem uninterested in
caregiving.
Recognizing this tenuous and contested status of the knowledge
and practice of care-

giving in medicine, the late, great American physician-educator
Walsh McDermott once
proposed, perhaps tongue-in-cheek, that the caregiving and
technological roles of the doctor
might be separated, and the former dropped from medicine as a
burdensome and poorly
cultivated anachronism. Almost no educators would agree with
McDermott’s provocative
suggestion—and even he probably would have withdrawn it
from consideration if he
thought it would be taken seriously, rather than stimulate
reform—but if we are willing
to honestly look into the actual situation of caregiving in
today’s medicine, we must come
away with the accumulating sense that caregiving is at best
inadequately taught and sup-
ported among students and physicians, and at worst is a hollow
skill that has been emptied
of content, commitment and competence. It is a vestigial
component of medical training and
practice that occupies an ambiguous and uncertain position in
the profession, as marginal as
clinical experience is in the age of ‘evidence-based’ practice,
and is in danger of becoming a

platitude that is taught hypocritically and learned only to be
unlearned as part of the hidden
curriculum in medical student and residency education.
If this conclusion strikes the reader as overly bleak and
unjustified then we must ask
what serious effort has been made in determining and
operationalizing the knowledge basis
needed to provide good care? What time has been allotted for
acquiring this skill in medical
school and residency training; for example, do students get
placed in caregiving situations,
say, in the homes of victims of health catastrophes, so that they
actually experience care-
giving? What provisions have been made to evaluate the
doctor’s skills in caregiving?
And, overall, how has caregiving been developed as a crucial
academic subject requiring
theory-building, empirical research and applied science
contributions? How often is assessment
of caregiving skills taken as seriously as assessment of basic
and clinical science knowledge?
Has medicine—under the great influence of global political
economic, bureaucratic, techno-

logical and cultural change—turned its back on the medical art
and the thousands of years
of humanistic approaches to medical practice cross-culturally?
Has the hugely powerful
biotechnology-medical-industrial complex, the over-
bureaucratized healthcare system with
its stark regime of efficiency on behalf of the god of cost-
containment and its new
culture of audit, and the global cultural revolution of
hyperindividualistic consumerism
292 j
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and Internet-spread marketing of the latest drugs and surgical
procedures separated
medicine from caregiving? Does the experience of competent
caregiving mold doctors’
careers nearly as much as the evidence of clinical science?
Experience and anti-heroism
For the medical anthropologist, people everywhere live in the
flow of interpersonal interac-
tions in local worlds—networks, families, institutions,

communities. Experience is that
flow of words, movements and emotions between us. Experience
seen this way is not only
local, it is inherently moral. Why so? Because living our lives is
about animating and enacting
values. We are constantly experiencing, negotiating, defending
and just living values. Those
lived values are the things that are personally and collectively
at stake for us: for example,
status, reputation, resources, connections, religious and cultural
practices, and so on. Moral
experience is the flow of things at stake in local worlds. Our
own moral life may be consist-
ent with or in conflict with our local worlds of experience. We
can collaborate with such
worlds or seek to resist and transcend them by our aspiration for
ethical commitment.
The clinic, the hospital, the HMO (Health Maintenance
Organization), the medical
school or the family setting of caregiving for victims of health
catastrophes are just such
local worlds of moral experience. Those local worlds are deeply
affected by the massive eco-
nomic, political and cultural forces of our globalized era. One

particularly egregious
example is the hyping of claims by the biotechnology industry,
by medical researchers and
by specialist practitioners of how much we know and can
control in health and disease.
The economic incentives for hyping are not difficult to
appreciate. The cultural sources of
hyping affect not only the medical industrial complex, but also
the financial management
industry, the insurance industry and the national and
international policy domains. Much
more is claimed than is actually known. It is often said, for
example, that half of all cancers
are curable but, as social psychologists have shown, just turn it
the other way around—half
of all cancers are incurable—and excessive optimism is replaced
by more sober reflections.
Most chronic diseases can only be managed, not cured, and their
sequelae in long-term,
disabling consequences such as blindness, amputation and
kidney failure in diabetes cannot
be controlled either. In the specialty of psychiatry, for all the
important advances of
neuroscience, we still don’t possess a single biological test for

routine clinical use to
diagnose depressive or anxiety disorders or schizophrenia. And
while the drug treatment
of serious depression has improved, still 35% of patients are
treatment-resistant and the
placebo effect itself in most clinical trials accounts for a 45%
improvement over against
65% for antidepressants—nowhere near the huge claims made
by the pharmaceutical com-
panies. Prognosis not only for mental health conditions, but for
most chronic disorders,
remains difficult and uncertain.
Now add to this picture all those things in the natural world—
like forest fires and brush-
fires, earthquakes, floods, droughts and climate change—that
affect hundreds of millions of
people, and the idea that we know, can predict, and can control
events looks highly suspi-
cious. Political violence, financial crises, outbreaks of food
contamination, major accidents
and the dozens of other dangers that are a regular part of our
lives only clarify more fully
that the very idea of risk management is overblown and
unsupported by the evidence.

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293
In fact, danger—natural and social—has been, and will for the
foreseeable future continue
to be, inadequately understood, poorly predicted, mostly
uncontrolled and largely unpre-
ventable. That is to say, danger and uncertainty are an ordinary
element in everyday living
everywhere—more notably among the poor, but affecting all of
us.
This is a picture of a huge discrepancy in our local worlds
between the dominant moral
reality that encourages exaggeration of knowledge and
treatment and the genuine reality of
our existential condition. The implications of this reality gap
for health and medicine are
simply enormous. Patients are misled by the media’s hyping
into highly distorted views of
what medicine can do. This has consequences for caregiving
relationships, in that caregiving
responsibilities most often come as an unpleasant, unplanned-

for shock, delegated to mar-
ginal persons or social groups, rather than an understood part of
life and moral responsi-
bility to one another in relationships. But health professionals
and students are also the
victims of routine hyping in the medical literature. It is
understandable that researchers
and medical research administrators will participate in this
process in order to secure greater
public and private funding, but it is nonetheless deeply
troubling that the scientific enter-
prise itself has been distorted by global economic and cultural
interests. Add to this the cor-
rosive, yet accurate popular idea that conflict of interest is
rampant in medicine, and the
widespread suspicion that health professionals are more
interested in their own financial
condition than in the conditions of their patients, and we all can
understand why distrust
of physicians has skyrocketed almost everywhere while the
status and prestige of the profes-
sion has fallen.
This tension is particularly apparent in a local setting like a
research lab or clinic. There

is immense pressure on young researchers and young clinicians
to collaborate with estab-
lished practices as they write grant applications, explain
research projects to the media or
elicit informed consent from patients. Think of this as a cultural
influence on the way pro-
gnosis is explained to patients being offered a new medication
or surgical procedure in a
clinical trial or for treatment. The price to pay is high for young
researchers or clinicians
who try to challenge the logic of this system, insisting on a
different moral orientation
from the prevailing forces. Although we will argue later in this
article that caregiving
must be integrated (or in some sense reintegrated) into the
training of doctors, we would
like to insist in this section that pedagogy is not enough. In fact,
a critique of the reduction-
ist paradigms of medicine must be at the basis of medical
practice. This is a question of both
a moral and a philosophical orientation, one that many doctors
and medical students
encounter daily as they struggle to resist the business paradigms
that push them to see their

patients as consumers. Those who do resist practice what we
define as anti-heroism, a moral
resistance to the status quo.
Anti-heroism is the best that may be available for most of us in
a world where true hero-
ism in the face of injustice may carry a price not all of us can
pay. Anti-heroic actions are
ones that critique and resist the moral status quo by perturbi ng
and disturbing our local
world. They signal disaffection and raise questions in others.
They indirectly challenge the
taken-for-granted. They run against the moral grain. In place of
actions that aim to change
the world, anti-heroic practices aim to create a space for
alternatives where critical self-
reflection can thrive. In such a space, local protagonists can
search for ways to live a moral
life in spite of the shortcomings of the local moral world. And
that quest for living one’s
own moral life can be generalized as an aspiration for ethical
positions that offer an
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A
alternative vision of what the local world might look like with
respect to social justice and
integrity and other trans-local values.
Medical practice is one setting where the anti-heroic can be, and
has been, realized.
W.H.R. Rivers, the early twentieth-century British
anthropologist-psychiatrist, introduced
a humanistic, ethnographic form of psychotherapy into the
medical care of traumatized offi-
cers during the First World War. That psychotherapy provided
Sigfried Sassoon, the highly
decorated yet anti-war poet, with a protected place to come to
terms with his own rebellion
against the carnage. Sassoon returned to the front without
giving up his critical political
views; Rivers, in turn, became an anti-war critic, devoting the
remainder of his life to poli-
tical transformation on behalf of pacifism, workers’ rights and
the legitimacy of psycholo-
gical trauma as an honorable and compensable medical
condition. Rivers’ anti-heroism

did not change his world, yet he opened a moral space for many
others to rethink their com-
mitments and rework their practices in service of more availing
ends and against the grain of
the dominant values of that era: colonialism, racism and
jingoistic nationalism. In our era,
anti-heroism offers a counter to the neoliberal agenda that has
put business before healing
in biomedicine, reducing the physician’s engagement with
caregiving even further.
For patients and families faced with health catastrophes and the
most serious chronic
medical conditions, the experience of suffering is not just a
personal one, but is strongly
influenced by cultural and historical changes in the illness
meanings, socialization and self
processes that …
~ Pergamon 0277-9536(94)00125-1
Soc. Sci. Med. Vol. 40, No. I, pp. 37~,6, 1995
Copyright © 1994 Elsevier Science Ltd
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I N D I V I D U A L OR SOCIETAL RESPONSIBILITY?
E X P L A N A T I O N S OF D I A B E T E S IN A N A N I S
H I N A A B E
(OJIBWAY) C O M M U N I T Y
LINDA C. GARRO
Northern Health Research Unit, Department of Community
Health Sciences, University of Manitoba,
750 Bannatyne Avenue, Winnipeg, Manitoba, Canada R3E OW3
Abstract--ln recent years, many aboriginal communities in
North America have experienced increasing
rates of maturity onset diabetes. This paper is based on
interviews held with individuals diagnosed with
diabetes in an Anishinaabe community in Manitoba, Canada.
The varying ways people account for their
own case of diabetes and the increase in diabetes generally are
described. Although people talk about
diabetes as a result of individual dietary choices, much of the
discourse links diabetes to environmental
and societal changes.
Key words--diabetes, cultural knowledge, explanatory models of
illness, Ojibway
When Europeans came to the New World, diseases
were introduced with profoundly negative conse-
quences for the first peoples. In the Canadian central
subarctic, the site of the research reported here, as in
many other locations, the population was soon rav-
aged by epidemics of infectious disease. Famine and
poor nutrition associated with changes in subsistence
strategies, often in response to pressures from the
newcomers, helped to maintain high rates of infec-

tious disease. Poverty, poor housing and overcrowd-
ing have kept rates higher in the present century than
national averages, although there has been much
improvement since around World War II. However,
the decline in the incidence of infectious diseases is
paralleled by an increase in chronic, degenerative
diseases, such as diabetes, cancer, heart disease and
other cardiovascular disorders. Aboriginal communi-
ties in the Canadian subarctic are currently undergo-
ing what has been referred to as an epidemiological
transition [1, 2].
Overall, studies of diabetes among the first peoples
of North America document a rapid increase in the
number of cases of maturity-onset diabetes (Type II
or non-insulin dependent diabetes) since World War
II, from virtually none to a situation described as an
'epidemic' [3, 4]. Although more current reviews of
diabetes morbidity data show that rates are variable
across North America, a recent study carried out in
several Ojibway and Cree communities in Manitoba
found that the prevalence of diabetes was signifi-
cantly higher in these communities when compared to
the general population and that more than half of the
existing cases had been diagnosed during the last five
years of the 25-year study period [5]. A national
Canadian study confirmed high rates of diabetes for
the aboriginal population in many areas. In addition,
for most regions, rates were higher in the southern
latitudes [6]. To explain the high rates of diabetes,
researchers have pointed to an interaction of genetic
components and environmental risk factors, such as
obesity, diet, stress and a sedentary lifestyle [7]. In the
national study, the significant negative association
between latitude and disease rates led researchers to

suggest "that latitude indicates the strength of under-
lying Euro-Canadian influence, manifest as lifestyle
changes along a n o r t h - s o u t h gradient" [6, p. 137].
One study examining risk factors for diabetes, obesity
and hypertension in a n u m b e r of reserve communities
in the Canadian subarctic concludes that although
comparable data from the Canadian national popu-
lation are not consistently available, these problems
clearly exist to a much greater extent within the
subarctic aboriginal population [8]. There is a grow -
ing awareness in communities and among those
involved in health care for aboriginal peoples--
including aboriginal organizations, government
medical services, health professionals and re-
searchers--that diabetes is a significant health prob-
lem that is not well addressed. At present, there is no
reason to expect decreases in rates of disease or
complications. This paper is based on a series of
interviews carried out in an Anishinaabe reserve
community (Anishinaabe, and its plural, An-
ishinaabeg are how people in this and other commu-
nities refer to themselves; they are also known in
different locations as Ojibway, Ojibwa, Saulteaux
and Chippewa. Ojibway will also be used here as this
term is used when presenting the community to
outsiders). The focus here is on how people in the
community accounted for both their own case of
diabetes and the increase in cases of diabetes within
the community.
37
38 LINDA C. GARRO

Crandon [9, p. 463] has noted that "what people
say about their social world through the idiom of
medicine are statements about political and economic
realities, and the meanings of ethnic relations." In the
interviews, it was frequently stated that diabetes is a
'new' illness that was not present 'in the old days.'
Some reported that diabetes was now so common
that it seemed as if 'everybody is diabetic.' People
often expressed their concern and puzzlement about
the ever increasing numbers of community members
who had received a diagnosis of diabetes, as can be
seen in the following exchange between a married
couple:
That's what I mean, where does it come from? Everybody's
starting to have that diabetes.
Yes, everybody has it.
I guess pretty soon everybody on the reserve will be like that
(D15, f, age 49 and husband [10]).
F o r diabetes, much of what people have to say is
embedded in a broader, generally shared, discourse
about 'white m a n ' s sicknesses.' An illness labelled as
a white m a n ' s sickness is seen as occurring for the first
time after Europeans came to North America (other
illnesses commonly referred to with this label include
measles, chicken pox, tuberculosis, cancer and high
blood pressure). White m a n ' s sicknesses contrast with
other illnesses which are attributed to retribution for
wrong-doing, the covert use of 'bad medicine' to
cause sickness in others, or illness which can be
explained by reference to a potentially observable
event, such as excessive cold, overeating, smoking or
overexertion.

Diabetes is specifically linked to the move away
from foodstuffs obtained through hunting and gath-
ering to an almost complete reliance on purchased
foods. This change is seen as occurring within basi-
cally the same time frame as community members
receiving diagnoses of diabetes and is thus consistent
with the widely shared perception that diabetes is a
new illness.
Yet, people are also influenced by biomedical
practitioners and explanations of diabetes also incor -
porated ideas attributed to information provided by
physicians and other health professionals. These ex-
planations draw on ideas about individual responsi-
bility for health, ideas which are common in North
American culture [11] and an integral part of many
health promotion messages [12, 13]. When supporting
this view, people stated that diabetes develops be-
cause of diet or other lifestyle habits. In particular,
eating too much sugar or being overweight were often
mentioned.
Usually both types of explanations were given in
the interviews. While many discussed diabetes result-
ing from individual dietary choices, the majority also
saw a relationship between diabetes and broader
societal and environmental changes. There is, how -
ever, variation in how individuals express these views.
This paper explores this variation.
THE RESEARCH SETTING
The research site is an Anishinaabe reserve com-
munity located in southern Manitoba. Although
some children speak only English, it is a community

where most adults still speak their own language and
prefer it in most social settings. As in many Canadian
reserve communities, there is insufficient land either
on the reserve or surrounding it to allow individuals
to follow subsistence or trapping-based means of
livelihood, except for a few fishermen. Over time,
much of the land surrounding the reserve has been
acquired for cultivation, although not by reserve
members. There are, however, some small tracts of
reserve lands which are farmed by a few families.
Most other employment opportunities are through
Band (tribal) government or related services. There is
high unemployment and many are dependent on
some form of economic assistance. Housing is
crowded and substandard; the majority of the houses
lack indoor plumbing of any kind.
The process of moving away from a resource based
economy has occurred over time and in a variable
manner. Some households have large gardens; wild
game and fish supplement the diets of most families,
and some rely much more heavily on such products
than others. Because of the lack of on-reserve em-
ployment, older people commented that when they
were younger they would often move back and forth
between the reserve and work sites in agriculture or
in the city. This still occurs to some extent. Some
elders state that a major shift occurred in the late 50s
when welfare assistance became available making it
possible for people to both live full-time on the
reserve and to purchase store bought goods. Increases
in access to and demand for consumer goods date
from about that time.
Biomedical practitioners and Anishinaabe healers
may be asked to provide diabetes care. Among those

who reported consulting an Anishinaabe healer, the
request was typically for herb-based medicines, said
to be effective in controlling diabetes. For the remedy
to be effective, it is necessary for those taking it to
abstain from drinking alcohol. Several individuals in
the community were said to know how to make such
a remedy. Distinct from those who only make herbal
medicines, are healers described as 'gifted' because of
their ability to communicate with and be guided by
spiritual beings. This kind of healer is rarely con-
tacted for advice when a diagnosis of diabetes has
already been given by a physician, although they are
consulted on numerous other occasions and es-
pecially when the cause of an illness or other misfor-
tune is uncertain.
A health center located on the reserve is staffed by
visiting physicians approximately three afternoons a
week. The health center also employs two public
health nurses and two community members who have
received specialized training as health workers. Other
physicians and hospitals are located in towns about
Explanations of diabetes in an Anishinaabe (Ojibway)
community 39
an hour's drive away. All medical care, including
transportation costs and prescription drugs, are
either covered by universal health insurance or the
federal government.
Physicians and nurses working in the community
stress the need for individuals to change their behav-
ior in order to control diabetes. At the time of initial

diagnosis, physicians state that they do not spend
much time discussing the possible causes of diabetes
or the physiological nature of the disease; the empha-
sis is on those factors seen as being under the personal
control of their patients. Patients are typically ad-
vised to lose weight through changing their diet and
getting more exercise. These messages are often re-
inforced during follow-up sessions with nurses, com-
munity health workers, or a hospital-based dietician,
if the person spends any time in a hospital. The
preferred treatment strategy is to prescribe drug
therapies only if the patient does not lose weight or
if the blood sugar levels remain high in spite of weight
loss. One physician explained that the only treatment
that could work on a long term basis was "diet and
exercise" as drug therapies were ultimately counter-
productive. However, at least with respect to the
current patient profile, many are eventually placed on
oral hypoglycemics or insulin injections.
STUDY P A R T I C I P A N T S
Eight were on insulin (D5, DI3, D16, DI9, D22, D26,
D27, D28). The remaining 22 had all been prescribed
oral hypoglycemics in the past and 16 reported that
they were on pills currently. For the six who reported
they no longer took pills, four clearly stated that they
had made the decision to stop without seeking a
physician's advice (D8, D20, D21, D24; reasons given
include a lessening of symptoms, concern about the
negative effects of medication, and running out of
pills and neglecting to obtain more) and the other two
had been in contact with their physician (D18, D30).
A r o u n d half reported having tried herbal remedies,
and several said they were using them at the time of
the interview. Several likened these remedies to pills

or insulin, pointing out that by themselves, they
control but do not cure diabetes. The main difference
is that costs are incurred for herbal remedies whereas
pills and insulin are provided at no charge. Some had
stopped taking the herbal remedies because of the
cost involved. Others, however, felt that diabetes was
not an appropriate sickness for Anishinaabe healers
to treat and that seeking care from a physician was
more suitable. No one reported knowing of an An-
ishinaabe healer who could cure diabetes, with differ-
ent opinions expressed about the likely existence of
such a healer. Responses were split for a question
which asked whether an Anishinaabe healer could
cure diabetes.
All of the 34 individuals who participated had been
previously diagnosed with diabetes. They were ident-
ified through a list of chronic illness cases and were
initially contacted by the local health center. The
majority are women (n = 26) with a mean age of 49
years. The high proportion of women on the chronic
list and in the sample is partially explained with
reference to two observations. First, women tend to
seek out care from the local health center more than
men, who may consult with physicians in other
locations. Second, existing statistics for the central
Canadian subarctic show that more women have
diabetes than men [5, 6]. In terms of formal edu-
cation, one informant had completed grade 8, but
none of the others reported going beyond grade 6.
At the time of the interview, individuals were doing
different things to deal with their case of diabetes. As
noted above, physicians and other health workers
may recommend several treatment strategies, includ-
ing changes in diet and exercise, in addition to

prescribed medications, if any. Because of the com-
plex nature of treatment recommendations, investi-
gating adherence to such recommendations was
beyond the scope of the present study. During inter-
views with the physicians providing care, they de-
scribed their diabetic patients as poorly compliant,
especially in following recommendations for dietary
changes, losing weight, and increased exercise.
Information was collected, however, on medication
usage. The primary treatment recomme nded for four
individuals was changes in diet (D3, DI7, D25, D29).
DATA C O L L E C T I O N AND ANALYTIC P R O C E D U
R E S
Two interview formats were used. First, using an
open-ended explanatory model framework [14], indi-
viduals were asked questions about the cause of the
illness, why it started when it did, the history of the
illness, the kinds of effects it has, what possible and
appropriate treatments there are, along with other
related questions and additional questions that arose
from the responses given. Individuals were free to
respond in either Ojibway, English or a mixture of
both. A community member, trained in the trans-
lation and interpretation of the questions, helped
when required. Fourteen were conducted mainly in
English, with most of the remainder predominantly in
Ojibway, although there was often a moderate
a m o u n t of switching between languages. The inter-
view was tape recorded and later transcribed.
After this discussion, individuals were presented
with a series of statements in Ojibway. After hearing
a recording of each statement (to minimize variation

in presentation as no written form of Ojibway is used
in this community), the individual was asked whether
the statement was true or not. The 68 statements
followed an appropriate format in Ojibway and were
taken from comments made in an earlier set of
informal interviews about illness carried out separ-
ately with 35 individuals. Many of the statements
came out of discussions about diabetes or hyperten-
sion, others came out of discussions of other illnesses.
The statements therefore do not represent the
SSM 40 I - - I )
40 LINDA C . GARRO
concerns o f health practitioners, but rather comments
and reflections m a d e by other communi ty members.
A highly similar set o f sentence frames was used in a
parallel study o f understandings a b o u t high b l o o d
pressure carried out in the same community; the
statements used in the interview a p p e a r in the appen-
dix o f another publication [15].
Statements were chosen to cover the same topics as
the explanatory model interviews, e.g. possible
causes, consequences, s y m p t o m s and treatments. A
little over a fourth o f the statements concerned
potential causes. A m o n g other questions, people were
asked if diabetes could develop from ingesting too
much o f particular foods (e.g. foods high in sugar,
salty foods, greasy foods) or drinks (e.g. alcoholic
beverages, water), from smoking too much, from
chemicals and additives in foods, from being over-
weight, from stress, from working too hard, if dia-

betes ran in families, if diabetes is contagious, and if
the Anishinaabeg had diabetes before white people
c a m e .
These statements were presented after the explana-
t o r y model interview so they would not influence the
more open-ended p a r t o f the interview. While it
would have been preferable to give each interview
format in separate sessions, this was not logistically
possible. When responding to the true-false state-
ments, people often made additional comments to
s u p p o r t o r clarify their response. In addition, the
true-false statements provide a check for items not
mentioned in the e x p l a n a t o r y model interview, which
may occur through omission or when a particular
true-false statement does not correspond to the indi-
vidual's personal experience but does represent
knowledge a b o u t diabetes learned through inter-
action with others.
The responses to these statements were examined
using cultural consensus analysis [16]. Cultural con-
sensus analysis was motivated by the observation that
when an a n t h r o p o l o g i s t asks questions o f informants,
neither the culturally a p p r o p r i a t e response nor the
ability o f the informant to give the culturally a p p r o -
priate response is known. The cultural consensus
model analyses questionnaire d a t a and provides an
estimate o f each individual i n f o r m a n t ' s cultural com-
petency (that is, the degree to which each informant
represents shared cultural knowledge a b o u t the given
domain). These estimates are then used to determine
the 'correct' response and their associated level o f
confidence. The model is based on the assumption
that the questions tap a coherent cultural d o m a i n
shared across informants, and provides a criterion for

assessing whether this assumption is met. As a full
description o f the analytic procedures is available
elsewhere [16-18], only a summary is given here.
The model is based on a factor analysis o f the
matrix o f response matches among informants after
a mathematical correction for guessing. F o r the
assumption o f shared cultural knowledge to be sup-
ported, the a m o u n t o f variance accounted for by the
first factor, which represents competence, should be
several times larger than the second, with all other
factors being relatively small. F o r this d a t a set, the
first eigenvalue is 12.32, the second is 2.84, and the
subsequent eigenvalues are quite small. The obtained
ratio o f 4.34 is in the same general range as other
studies and supports the assumption o f shared under-
standings a b o u t diabetes.
The mean competency for all respondents is 0.576
which can be interpreted as meaning that respondents
' k n e w ' the answers to approx. 58% o f the questions.
A d d i n g to this value the half o f the remaining
questions for which individuals can be expected to
guess the correct answer, on average 79% o f the
answers given reflect shared cultural understandings
a b o u t diabetes. F o r each true-false question, the
p r o g r a m determines whether true or false is the
culturally 'correct' response and provides an associ -
ated level o f confidence, providing the investigator
with a basis for assessing whether there is consensus
for individual questions, and not just for the d a t a set
as a whole. Nine o f the 68 statements did not reach
significance with the confidence level o f P < 0.001
and thus could not be reliably classified true or false
(therefore, there is no shared agreement a b o u t the

response to these statements).
Because o f the focus on explanations for diabetes
a complete analysis o f this d a t a set will not be
presented here, although it is available elsewhere [19].
However, the pattern o f responses and the level o f
consensus for the subset o f statements relating to
cause will be discussed when relevant in the following
sections.
S H A R E D U N D E R S T A N D I N G S A B O U T D I A
B E T E S
Diabetes is seen to arise because there is too much
sugar in the body. 'Sugar sickness' o r 'sweet sickness'
are translations o f terms in Ojibway used to refer to
diabetes. When speaking in English, the word ' s u g a r '
may be used interchangeably with diabetes. A l t h o u g h
diabetes is usually described as a long-term condition,
it is also considered to be episodic, depending on
whether the a m o u n t o f sugar in the b o d y is high, low
or 'on the level.' All but one person agreed with the
true-false statement that the level o f sugar in the
b o d y goes up and down. There are ways individuals
can influence the a m o u n t o f sugar in their body, for
example, by eating certain foods. Most claim to be
able to tell when their sugar is high by the presence
o f symptoms. These include blurry vision, thirst,
excessive weakness and fatigue, headaches, dizziness,
numbness in hands and feet, and feeling warm or
feverish. Some reported using perceived symptoms as
a cue for taking medication; others used their physi-
cal state as a yardstick for assessing current food
intake or the effectiveness o f treatment. People see
themselves as varying in severity. Those who de-
scribed themselves as having only 'a bit o f sugar'

along with those whose primary treatment was diet
Explanations of diabetes in an Anishinaabe (Ojibway)
community 41
a n d exercise o r t h o s e w h o h a d s t o p p e d t a k i n g
m e d i -
c a t i o n s (the first feature typically c o - o c c u r s with o n
e
o f the o t h e r two), described their o w n case o f d i a b e t
e s
as n o t t o o serious. W h i l e such i n d i v i d u a l s m a y
experi-
ence s o m e s y m p t o m s , they generally c o n s i d e r t h
e m -
selves to be in a relatively g o o d state o f health. T h o s e
w h o are o n insulin are m u c h m o r e likely to j u d g e
their
case o f diabetes as a serious illness, as d o others. All
but one person agreed with the s t a t e m e n t that dia-
betes c o u l d result in death. I n the e x p l a n a t o r y m o d
e l
interview, p e o p l e n o t e d that diabetes c o u l d lead to
blindness a n d limb a m p u t a t i o n s a n d e v e r y o n e k
n o w s
at least o n e person w h o was suffered a severe c o m p l i -
c a t i o n a t t r i b u t e d to diabetes.
A s n o t e d earlier, there are t w o general types o f
e x p l a n a t i o n s for diabetes. F o r the first, d i a b e t e s
is
b r o a d l y a t t r i b u t e d to the ' f o o d s we e a t . ' E v e
r y indi-
v i d u a l gave a diet-related e x p l a n a t i o n for their o w n

case o f diabetes. E a t i n g o r d r i n k i n g t o o m u c h o
f
p a r t i c u l a r things o r o v e r e a t i n g in general were c
o m -
m o n l y m e n t i o n e d . S u g a r o r f o o d s high in s u
g a r were
the m o s t f r e q u e n t items singled out. A n u m b e r o f
times, a c c o m p a n y i n g this type o f e x p l a n a t i o n
was a
s t a t e m e n t t h a t this is w h a t they had been told by a
d o c t o r o r nurse. H e r e are s o m e s a m p l e c o m m e
n t s :
You get ~sugar' eating too many sweets--sugar, candy bars,
sodas--things like that. That's the main thing. You eat too
much, and you get sugar easily. I guess everybody has sugar,
but some people have too much (DI4, f, 63).
That's what 1 would say it comes from--sugar. Someone
who used a lot of it. Yes, that would make you fat and that
is where diabetes comes from (D26, f, 37).
1 got sugar because I was too fat. I weighed too much (D11,
f, 62).
I used to drink a lot of homebrew before and that stuff is
made with sugar. I knew an old man who got that sickness
from it. He always made homebrew to drink for himself and
he got sugar diabetes and he also didn't eat sweets so I think
that is where he got it from (D30, f, 48).
The ones that like to drink wine. I knew a lot who did and
that's where they got the sickness from because it's sweet
(D25, m. 41).
F o r the t r u e - f a l s e q u e s t i o n s there were high

levels o f
a g r e e m e n t for s t a t e m e n t s t h a t d i a b e t e s c o
u l d c o m e
f r o m ingesting t o o m u c h s u g a r (100%), f r o m d r i
n k -
ing t o o m u c h a l c o h o l (85%), a n d f r o m being over -
weight (82%).
T h e o t h e r widely shared causal e x p l a n a t i o n places
d i a b e t e s within the c o n t e x t o f a diet c h a n g i n g f
r o m
a b o r i g i n a l wild f o o d s to o n e o f p r i m a r i l y
store
b o u g h t foods. This e x p l a n a t i o n was used to a c c o u
n t
for the recent i n t r o d u c t i o n o f d i a b e t e s into the c
o m -
m u n i t y . Also related to this are c o m m e n t s t h a t it
seems as i f ' e v e r y b o d y is d i a b e t i c ' a n d p r e d i
c t i o n s
t h a t in the foreseeable future ' e v e r y b o d y o n the
reserve will be like t h a t . ' A s n o t e d earlier, diabetes is
o f t e n t a l k e d a b o u t as a ' w h i t e m a n ' s sickness'
a n d is
g r o u p e d with o t h e r illnesses seen as b e i n g i n t r o d
u c e d
to N o r t h A m e r i c a by E u r o p e a n s . S t a t e m e n t
s similar
to the f o l l o w i n g o c c u r r e d in a n u m b e r o f
interviews:
" I t ' s the white m a n ' s fault. A n i s h i n a a b e g n e v e r
h a d
s u g a r d i a b e t e s " ( D I 8 , f, 63). I n a n s w e r i n g t
r u e - f a l s e
questions, all b u t f o u r i n d i v i d u a l s r e s p o n d e d

nega-
tively to: " D o y o u t h i n k t h a t b e f o r e the white m a
n
came, the A n i s h i n a a b e g h a d d i a b e t e s ? " H o w e
v e r ,
t h o s e in the m i n o r i t y also n o t e d t h e increasing n u
m -
bers o f p e o p l e with d i a b e t e s a n d c o n n e c t e d
this with
changes in e a t i n g habits. Below are s o m e e x a m p l e s
o f
the types o f s t a t e m e n t s p e o p l e m a d e :
They never ate the foods we're eating now. They used to eat
wild life. Nowadays nobody eats wild food (D31, f, 44).
In the old days, Indians ate nothing but wild food. Nobody
was ever sick (D30, f, 48).
Long ago people lived to be 100 years old. They survived
that long. They didn't eat junk food, like we do today. They
survived that long without these illnesses. And nowadays,
just look, they're coming in with all these sicknesses all the
time (D10, m, 59).
The food we eat today, nobody ate it before. The only food
they ate was wild foods. Even in the summer, ducks were
eaten, but ever since everything was forbidden, people have
all kinds of sicknesses (D15, f, 49).
In the old days, Anishinaabeg were healthy and happy;
nowadays they get operations. In the old days they would
never get s i c k . . . That's what my mother told me--these old
people didn't get sick. They ate wild fruit and wild veg-
etables---carrots, turnips, onions (DI4, f, 63).

VARIATION IN EXPLAINING DIABETES
A n e x p l a n a t i o n that was v a r i a b l y r e p o r t e d c
o n -
cerned the i m p o r t a n c e o f heredity. In the e x p l a n a t
o r y
m o d e l interview, o n l y seven p e o p l e m e n t i o n e d t
h a t
diabetes r a n in families and f o r n o o n e was h e r e d i t y
either the key o r exclusive cause. H o w e v e r , slightly
o v e r h a l f r e s p o …
SETHA M. LOW
T H E M E A N I N G O F N E R V I O S : A S O C I O C U
L T U R A L A N A L Y S I S
O F S Y M P T O M P R E S E N T A T I O N I N S A N J O
S E , C O S T A R I C A
ABSTRACT. The foundation of the symbolic tradition in
medical anthropology is the
examination of a patient's experience of a category of illness.
The interpretation of folk
explanations of etiology and nosology provides insight into the
cultural definition of what
constitutes an illness, how and why an illness is labeled, and
how the afflicted individual
should be treated. Further, the analysis of sociocultural meaning
emerges as a critical the-
oretical contribution to our understanding of health and culture.
Alien Young in his article "Some Implications of Medical
Beliefs and Practices for Social

Anthropology" suggests " . . . that if we want to learn the social
meaning of sickness, we
must understand that 'signs,' whatever their genesis, become
'symptoms' because they are
expressed, elicited, and perceived in socially acquired ways"
(1976: 14). He further states
that some categories of sickness are particularly interesting in
that they enable people to
organize the illness event into an episode that has form and
meaning (1976: 19-20).
Nervios is an example of a symptom that has acquired a special
sociocultural pattern of
expression, elicitation and perception in San Josg, Costa Rica.
The empirical study of
symptom presentation in general medicine and psychiatric
outpatient clinics describes the
patients who present the symptom and their associated attributes
and explanations of the
symptom's occurrence. The meaning of nervios is then discussed
within a social interac-
tional and symbolic framework.
I N T R O D U C T I O N
In Costa R i c a the s y m p t o m o f nervios (nerves) is e m p
l o y e d in a v a r i e t y o f settings
t o signal p s y c h o s o c i a l distress. I t is a c u l t u r a l l
y a p p r o p r i a t e s y m p t o m in t h a t its
pervasive use is p r i m a r i l y w i t h i n Costa Rica; persons
o f all social statuses, age
and sex use t h e t e r m ; and its use elicits w h a t is c o n s i
d e r e d t h e socially a p p r o p r i -

ate response o f e x p r e s s e d c o n c e r n and a t t e n t i o
n . Nervios is e t i o l o g i c a l l y l i n k e d
t o f a m i l y d i s r u p t i o n and a b r e a k d o w n in f a m
i l y r e l a t i o n s h i p s , p r o v i d i n g a socially
a c c e p t a b l e c a t e g o r y o f p h y s i c a l a n d m e n t
a l d i s t u r b a n c e for t h e s y m p t o m s o f
being ' o u t o f c o n t r o l ' , g e n e r a t e d b y d i f f i c u
l t f a m i l y r e l a t i o n s . The e x a m i n a t i o n
o f p a t i e n t p r e s e n t a t i o n o f nervios is illustrative
o f h o w a s y m p t o m links an in-
d i v i d u a l ' s p e r s o n a l e x p e r i e n c e w i t h t h e
social i n s t i t u t i o n s o f f a m i l y a n d h e a l t h
care in a c u l t u r a l l y m e a n i n g f u l w a y .
The t h e o r y and d a t a e m p l o y e d t o analyze t h e m
e a n i n g o f n e r v i o s are o r g a n i z e d
in a research r e p o r t f o r m a t . The research p r o b l e m
is first p r e s e n t e d i n c l u d i n g
a review o f references t o nervios in t h e m e d i c a l a n t h
r o p o l o g i c a l l i t e r a t u r e a n d a
c l a r i f i c a t i o n o f t h e p r o b l e m . The s e c o n d s
e c t i o n describes the r e l e v a n t research
s e t t i n g , m e t h o d and sample. A d a t a s e c t i o n
follows w h i c h discusses o u t p a t i e n t

s y m p t o m p r e s e n t a t i o n , t h e c h a r a c t e r i s t i
c s o f p a t i e n t s p r e s e n t i n g nervios, and
Culture, Medicine and Psychiatry 5 (1981) 25-47. 0165-
005X/81/0051-0025 $02.30.
Copyright © 1981 by D. R eidel Publishing Co., Dordrecht,
Holland, and Boston, U.S.A.
26 SETHA M. LOW
doctor diagnosis and treatment of those patients. Finally, a
theoretical and
concluding section explores the psychological, social and
cultural meaning of
nervios.
RESEARCH PROBLEM
Health to a Costa Rican is expressed as well-being (bienestar)
or to be sound,
whole, or complete (estar sano). To achieve and maintain this
well-being requires
that one must vivir tranquilo, that is live calmly, tranquilly, in
balance with
oneself and one's physical, social, and psychological
environment. Nervios, or
"nerves", the focus of this paper, appears as a counterpart to the
expressed ideal
state, signifying an interruption in the individual's ability to
vivir tranquilo.
values, ideals, and culture.
The relationship of health and culture is illuminated through the

symbolic
and psychophysiological expression of cultural rules in body
image and body
experience. The examination of one symptom therefore can
decode a much
larger cultural matrix of beliefs and ideals. An in-depth analysis
of the attached
meanings, social context and interpersonal manipulation of
nervios will provide
insights to the individuals' response to a changing world.
The interpretation of symptoms as sociocultural phenomena has
traditionally
been an area of concern for medical anthropologists and has
included studies of
communication problems in public health assistance programs
in Latin America
(Simmons 1955; Wellin 1955; Foster 1962, 1969; Erasmus
1952, 1968), studies
of ethnic disorders or culture-bound syndromes (Honigman
1967; Kiev 1964,
1968; deReuck and Porter 1965; Foulks 1972; McDaniel 1972;
Yap 1969;
Cawte 1976; Weidman 1979; Bilu 1980), and epidemiological
and theoretical
analyses of folk illness (Fabrega and Metzger 1968; Rubel
1964; Foster 1953;
Frake 1961; Currier 1966; Ingham 1970; O'Neil and Selby 1968;
Scott 1973;
Uzzell 1974). These perspectives, however, have limited
applicability and can
be theoretically restrictive when dealing with symptoms whose
physical and
behavioral characteristics are diffuse and difficult to define.
Recent theoretical

approaches to symptom interpretation therefore have employed
semantic analysis
(Good 1977; Kay 1979), symbolic analysis (Moerman 1979;
Tousignant 1979),
cultural role recruitment (Townsend and Carbone 1980), and
models of clinical
explanation (Gaines 1979; Blumhagen 1980; Kleinman 1980) to
more effec-
tively identify the sociocultural meaning of symptoms.
The initial literature search for references to nervios revealed
few mentions
of the term and provided minimal explanation for its usage. A
reference from a
village in Mexico indicates that "such items as bad blood,
cramps, colds, arthritis,
indigestion, and nerves actually subsume a large number of
disorders" for the
THE MEANING OF NER VIOS 27
local curer (Brown 1963: 101). Among working class Mexican
psychiatric out-
patients, "a few persons mentioned nerves" as the problem for
which they were
seeking help; and in response to a question on the cause o f
their disorder, 70%
agreed nervios was involved, women tending to agree more than
men (Fabrega
1967: 706). A woman in Fabrega's sample also stated that she
needed to "dom-
inate her nerves" in order to get better (Fabrega 1967: 706), a

comment often
heard outside the medical consultation in San Jos6. Puerto
Ricans in the United
States "seek the help of Spiritists when they have . . . problems
with their
'nerves'" (Garrison 1972: 3). North American references to
nerves include a
study undertaken in North Carolina where patients receiving
public health
nursing care frequently complained o f "nerves" and/or
nervousness (Leighton
1968: 39) and a Nova Scotia study population reporting minor
psychiatric
symptoms sometimes described as "nerves" (Schuchat 1975).
Historically, a book o f Nicaraguan folk medical terms reports
two varieties
o f nervios which are recorded from early Nicaraguan studies:
nervios regados
in which a person is nervous, easily excitable, manifesting
punctuated muscle
pain and insomnia; and nervios resentidos in which a person
who is not able to
get rid o f his troubles suffers pain, anger, passion and
melancholy (Miranda
1967: 235). Mexican medical folklore identifies nervousness
(nerviosismo) as
an anxious reaction which accompanies susto characterized b y
sensation in the
m o u t h o f the stomach, bones or chest, however nervios as a
distinct symptom
is not mentioned (Padron 1956). Francisco Escobar, a Costa
Rican sociologist,
suggests that nervios is related to an old folk notion o f

calbagar, a term used
to excuse one from fulfillment o f normal duties because o f a
personal crisis
such as loss o f a loved one, economic disaster, or insult to
one's pride (personal
communication); however, no published reference to this
concept was found.
Recent references to nervios have increased with the publication
o f new
medical anthropological studies from Latin American and
Galenic influenced
cultures. Nervios in Colombia is related to mental disorder and
debilidad (de-
bility) (Langdon and MacLennan 1979). Researchers from Iran
report "nerves"
as a women's problem (Good 1980) and as a location o f
distress (Good 1977).
Finkler (1980), Sandoval (1979), Garrison (1977) and Harwood
(1 9 7 7 )refer to
"nerves" in relation to symptom presentation for spiritualist
treatment. Spicer's
(1977) collection o f Southwest medical ethnographics reports
the occurrence o f
"nerves" in various border cultures.
The literature establishes that nervios is present in Mexico,
Colombia, Ni-
caragua and the Southwestern United States, while "nerves" and
"nervousness"
have a broader distribution; however, because the references are
brief and fo-
cused on other topics it is difficult to ascertain whether the

reported symptoms
are the same as nervios in Costa Rica. In other words, it is not
clear from the
literature that nervios is a phenomenon particular to each
situation or whether
28 SETHA M. LOW
it has cross-cultural significance. This question requires
extensive further re-
search. For the purposes of this paper, nervios refers to the
symptom as it occurs
only in Costa Rica. The special relationship o f nervios to
Costa Rican cultural
themes, the frequent presentation o f the symptom in the
physician's office,
and the widespread use of nervios in conversation in a vari ety o
f social settings
suggest that the meaning of nervios in Costa Rica is framed by
the cultural
context.
RESEARCH METHODOLOGY
Setting
The research data upon which this paper is based were collected
in San Jos6,
the capital of Costa Rica, located on the Meseta Central of this
small Central
American republic. With a metropolitan population o f over
460,000, one-fourth
of the national total, San Jos6 is a primate city representing

53% of the country's
total urban population (Morse 1971 ; Ministerio de Economia
1974). Costa Rica,
like many developing countries, is experiencing rapid
urbanization in which a
large proportion o f the rural population has moved to the
capital straining social
services and physical resources. The resulting unemployment,
poor housing
conditions and increasing social disorder has disrupted
traditional patterns o f
family structure and community organization (Low 1977).
Costa Rican family structure emphasizes independence and self-
sufficiency
historically attributed to the subsistence agricultural economy.
Life is family-
centered in the sense that significant personal relations usually
lie within family
boundaries. When asked about friendships outside the family a
Costa Rican
denies having close (intima) friends; friendship is suspect as it
suggests non-
familiar alliances and an unwillingness to fulfill family
obligations.
Internally, family functions segregate into duties and
responsibilities appro-
priate to a member's age or sexual status. Husband and wife
maintain segregated
conjugal networks, reinforcing ties with their own
consanguineal families through
labor exchange, visiting, and residential proximity. Any
deviation from the ideal
family pattern increases one's susceptibility to disequilibri um in
the form o f

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