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The social origins and expressions of illness

Merrill Singer
Center for Community Health Research, Hispanic Health Council, Hartford, Connecticut, USA

The social origins and expressions of illness

Correspondence to:
Merrill Singer, Center for
Community Health
Research, Hispanic Health
Council, 175 Main St.,
Hartford, Connecticut
06106, USA. E-mail:
Anthro8566@Aol.Com

One of the tenacious assumptions of biomedicine is that disease can be


conceptualized as a discrete entity1. Each of the identified health conditions
listed in the accepted compendium of recognized diseases, known as the
International Classification of Diseases (ICD)2, be it AIDS or autism, and
every specific case of disease expression in an individual patient, is
understood in biomedicine as an objective, clinically identifiable part of
material reality, a thing-in-itself. Even if disease is outside of patient
awareness and consequently the patient suffers from no experiential
symptoms (e.g. hypertension or diabetes), the physical existence of the
disease as an isolatable part of nature is accepted. Consequently, in
normal, day-to-day practice, whether it involves examination and diagnosis, patient care and treatment, or clinical research, biomedicine is
guided by a confident conceptualization of diseases as distinct, discrete
and disjunctive entities that exist within individual human (or other)
bodies. Diseases, in short, have in biomedicine an aura of factuality3.
Thus, based on many years of work in medical settings, Good (p. 70)4
comments that he has been struck again and again by the enormous
power of the idea within medicine that disease is fundamentally, even
exclusively, biological. Further, diseases have an existence that is seen
as separate from the social groups and social contexts in which they are
found. As Gordon (p. 28)1 summarizes, in biomedicine
what is natural is beyond the sphere of social influence . . . In medicine it is
basically believed that disease follows its own rules, neither those of kings or

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DOI: 10.1093/bmb/ldh016

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This chapter draws on British medical anthropologist Ronald Frankenburgs notion


of the making social of disease, and his related concepts the making of disease
and the making individual of disease, to review the biomedical conception of
disease from the perspective of medical anthropology. As opposed to the
tendency of biomedicine to treat disease as a category in nature, a finite and
objective reality discoverable through scientific endeavour, medical anthropology
seeks to demonstrate the social origins of both the biomedical conception of
disease and the expression of the sicknesses labelled diseases by doctors.

Cultures of health, cultures of illness

slaves . . . Disease is essentially an individual problem and is systematically


abstracted from social context.

This approach to biomedical disease has been under challenge from medical
anthropology for several decades5. Central to this challenge is the needed
transformation that Ronald Frankenberg3,12 has termed the making social
of disease. The goal of this chapter, which honours Frankenbergs contribution to the social science of health, is to review his argument and its relevance for reconceptualizing disease in social context.

Three processes in the health domain

Learning medicine is not simply the incorporation of new cognitive knowledge,


or even learning new approaches to problem-solving and new skills. It is a
process of coming to inhabit a new world.

Goods point here is that a central achievement of medical school is


teaching students to see the human body with new eyes, or with what
Foucault6 termed the medical gaze. In anatomy, this entails training
the eyes to see structure where none was obvious (p. 74)4. In diagnosis,
it involves putting together pieces to formulate a creditable explanation
of recorded signs and symptoms of disease. Rather than a straightforward course, diagnosis requires attention to some information and the
ignoring of other information, a unification of scattered facts (drawn
variously from patient self-report, the report of significant others
attached to the patient, direct doctor observation, possible consultation
with other health professionals, the use of basic examination tools like
stethoscopes, input from electronic machinery like EKGs or scans of various
sorts, and diverse types of laboratory test results), and the organization
of these facts to fit the definition of an established disease7. Through this
complex process, disease cases are constructed but the multiple creative
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In calling for an alternative approach to disease, Frankenberg differentiated three processes in the health domain. The first involves the making of
disease, which entails the doctor or other health care provider assembling signs and/or symptoms and constructing a biological (or psychiatric) diagnosis. Rather than the clearcut, objective pathway leading
directly from recording signs and symptoms to the making of a diagnosis (as expressed in the ideal biomedical account of the process), doctors
must, in fact, engage in a highly constructive process involving the creation of a disease from a welter of differentially clear evidence. The capacity to engage in this process begins in medical school, long before a
medical student sees his/her first patient. Notes Good (p. 70)4:

Social origins and expressions of illness

and interpretive acts this requires are denied (even while doctor skill in
finding the truth hidden in the shadows is celebrated). With reference to
asthma, one of the fastest growing diagnoses, for example, Willems (p.
107)8 points out:
The varieties of drug treatment against breathlessness . . . are not a passive
reflection of given differences [in signs and symptoms], but contribute to the
creation of these differences. Thus different treatment practices involve the
making of different diseasesdifferent asthmasand different lungs as the
locus of disease.

The problem in the lab now is that people want black and whiteits cancer
or its nothowever this is rarely the case. In the lab most things are somewhere in the middle, they are hard to define. I hate them. It is easy to see cancer
or normality but the gray areas are a problem.

Affirming the notion of medical gaze, another laboratory worker told


Singleton (p. 8)9, it takes a trained eye to see cancer in many medical
specimens.
Understood in this way as constructed processes, diagnosis, laboratory
assessment, and other aspects of medical practice are unavoidably open
at various points to influence from the cultures of the medical professional (including national, regional, ethnic, medical, family and other
heritages). Grasping this point fully leads rapidly to the destabilization
of official accounts of diagnosis as a scientifically guided process; for it
is at the same time as much or more a culturally guided process as well.
Exemplary is Martins10 now classic account of menopause as a medical
diagnosis. Two cultural themes, fairly clearly derived from economic
production, appear to structure biomedical understanding of menopause
and menstruation. On the one hand, menopause is described in medical
textbooks and medical school classes as a breakdown of the authority
structure of the body. Expressing this breakdown of authority, the ovaries
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This construction occurs not only at the level of the doctor but elsewhere in the pathway to diagnosis as well. For example, blood or other
tissues regularly are drawn from patients for laboratory analysis. Commonly, if patients are actually told of the outcomes of their tests, they are
given limited accounts expressed in numerical terms or in descriptive
terms that doctors select to present the numbers in a way they think
patients will better understand. But what actually happens to the samples
once they are drawn from the patient only to return as findings? Based on
interviews with medical laboratory staff, Singleton9 reports considerably
greater uncertainty and construction than patients realize. For example,
one laboratory worker noted the following about tests for malignancy
(p. 93)9:

Cultures of health, cultures of illness

Our culture objectifies technology and sets it apart and above human affairs.
Here technology has come to be viewed as an autonomous process, having a
life of its own, which proceeds automatically, and almost naturally, along a
singular path. Supposedly self-defining and independent of social power and
purpose, technology appears to be an external force . . .

Hidden in our social construction of technology as a cultural category is the


entire process of human decision-making about where our energies should
be applied in technological development, who controls the funding and
implementation of new technologies, who operates and determines the way
(and, as regards medicine, upon whom) technology is actually used, and
who interprets the use or (in the case of medical technologies) meaning of
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become unresponsive to stimulation from the gonadotropins, the hypothalamus begins to give inappropriate orders, follicles fail to muster the
strength to reach ovulation (p. 42)10. On the other hand, descriptions of
menstruation often have the tone of botched production. Observes Martin
(p. 46)10, [m]enstruation not only carries with it the connotation of a
productive system that has failed to produce, it also carries the idea of
a production gone array, making products of no use, not to specification,
unsaleable, wasted, scrap. In a culture, such as that in the US, that privleges economic production and in which the very mission of society is
sometimes said to be business (e.g. as in Calvin Coolidges famous statementa), it is not surprising to find business conceptual models hegemonically
diffused through society generally. What is important here is that such
notions of clearly particularistic cultural origin serve as the building blocks
of biomedical thinking.
Following Foucault6, we have come to understand something of how
medical perception, and hence disease definition, changes over time, and
the relationship of these changes to wider sociocultural transformations.
As a result, diseases of the past (e.g. revolutiona, drapetomania, dysaethesia aethipis, onanismb) are no longer accepted as bonafide diseases,
diseases of the present may not be diseases for subsequent generations,
and diseases that have not yet been imagined await future discovery.
Diseases, as social constructions, change because society changes. The
advance of medical technology contributes significantly to this process,
penetrating new bodily barriers, significantly magnifying body locations, and opening up new worlds to the clinical gaze. Medical schools,
in turn, are places for learning how to see disease (in X-rays, blood test
results, CT scans, and other measurements and images of the body). The
assumption is made in biomedicine that, as contrasted with patient
reported symptoms, the numbers and other findings generated by medical technology are unambiguously neutral and rigorously objective,
devoid of cultural input. As Noble11 (p. x) stresses:

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its product (e.g. abortion). These are not neutral arenas isolated from contested ideas or unequal players. Rather, they are some of the social environments in which power, expressed both as ideology and as action, is
manifested in the health domain. In short, each of these moments in the
technology process are, in Frankenbergs (p. 206)12 words, contexts in
which continuous and pressing problematic relationships between individuals and groups of differential power [compete] unequally for resources.
As cultural formations, not only do biomedical clinical understandings
vary over time but over place as well. Biomedical thinking is shaped by its
national setting, as is illustrated by Payers13 penetrating comparative analysis of medicine in four countries: France, Germany, Britain, and the
United States. According to Payer, French biomedicine, with its strong
tendency toward abstract thought, results in doctor visits that are much
longer than in German biomedicine. French biomedicine also places a
great deal of emphasis on the liver as a key locus of disease, including
complications such as migraine headaches, general fatigue, and painful
menstruation. Conversely, German biomedicine regards Herzinsuffizienz,
or poor circulation, as the root of a broad spectrum of ailments, including
hypotension, tired legs and varicose veins. Both German and French biomedicines rely more heavily than the US counterpart on the capacity of
the immunological system to resist disease and therefore both systems deemphasize the use of antibiotics. Further, they were much quicker than US
biomedicine to develop an acceptance of complimentary and alternative
medical systems, such as naturopathy, homeopathy, hydrotherapy and
extended stays at spas in peaceful, park-like surroundings. In contrast, US
biomedicine relies much more than the biomedicines of France, Germany,
and UK on invasive forms of therapy, such as caesarean sections, hysterectomies, breast cancer screenings, and high dosages of psychotropic drugs.
In comparison with these other biomedical traditions, US biomedicine
manifests a pattern of aggression that seems in keeping with the strong
emphasis in American society on violence as a means of solving problemsa pattern undoubtedly rooted in the frontier mentality that continues to live on in what has for the most part become a highly urbanized,
post-industrial society. In this sense, the war on cancer and the war on
drugs are symbolic cultural continuations of the war against Native
Americans that cleared the frontier for white settlement.
In sum, as Good (p. 53)4 has argued, disease is not an entity but an
explanatory model, it is a unit for grouping and understanding why individuals get sick and specifying what condition they are suffering from. This
is not a denial of the material reality of biology, nor of the real effects of
pathogenic agents and other disease causing entities. How we think
about their health effects, how we group and label them, the meanings
we invest in them, and how we act on this construction (i.e. the making
of disease), however, is not specified in biology. It is a cultural process.

Cultures of health, cultures of illness

The second process in Frankenbergs schema involves the making individual of diseases, that is, the development of patient consciousness
about and experience with being sick. Part of biomedicine involves helping patients to conceptualize their symptoms (or even a lack of symptoms) as a biomedically verified disease, or disputing patient claims to
unrecognized disease as with medically presented folk illnesses, like soul
loss or spirit possession14. At the same time, recognition of illness
(defined as patient conception and experience) as different from disease
(defined as doctor perception and conception) allows analysis of disjunctions in the doctor/patient relationship1417. As Frankenberg (p. 201)12
notes

As this statement makes clear, patients are not blank slates upon which
to inscribe the ideology of biomedicine; they come equipped with a range
of ideas, beliefs and emotionally charged concerns about health and illness. Consequently, part of the work of practicing medicine consists of
convincing patients that their ideas and understandings in the health arena
are subjective and thus suspect, whereas those of biomedicine are scientifically grounded and thus uncontestably authoritative.
Various studies have noted that doctorpatient interactions frequently
reinforce hierarchical structures in society at large by stressing the need
for the patient to comply with a social superiors or experts judgment.
Although a patient may be experiencing job-related stress that may manifest itself in various diffuse symptoms, the doctor may prescribe a sedative to calm the patient or help him or her cope with an onerous work
environment rather than challenging the power of an employer or supervisor over employees. Doctors, after all, practice medicine not social
change, and hence their recommendations are overwhelmingly medicalized. However, they are not therefore neutral. Nor do they necessarily
address what often is really bothering patients (e.g. economic woes,
tensions on the job, interpersonal conflicts, victimization, discrimination). As Waitzkin (p. 9)18 points out:
Professional-client encounters are not the only way that order is achieved in
society, but they are one way. When patients present problems that have
roots in the social context, doctors generally offer some form of assistance
but rarely express contextual criticism.
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The physician takes blood and looks at X-rays and seeks other signs independent of patient consciousness. He reserves the right to himself to decide
whether or not to reveal what he thereby finds . . . [T]he western physician
seeks in his contest with patients to alienate from them their very biography;
their construction of the meaning of their own situational life project as well
as the part of it which brings them to consultation.

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The making individual of disease, in short, involves clinical acts of


privatization, with diagnosis and intervention focused at the individual
level, whatever the social origin of the disease in question. The making
individual of disease, like the making of disease itself, is a cultural process, but one that reveals even more clearly than the making of disease the
structures of social relations in society. As Frankenberg (p. 200)12
observed, in medicine the social processes paradoxically operate in
order to individualize.
At a higher level of abstraction, the same processes involved in the making individual of disease involve the claiming of new experiential and
behavioural territory for biomedical intervention, a practice that has
been called medicalization19. This practice entails the absorption of everwidening social arenas and behaviours into the jurisdiction of biomedical treatment through a constant extension of pathological terminology
to cover new conditions and behaviours. Health clinics, health maintenance organizations and other medical providers now offer classes on managing stress, controlling obesity, overcoming sexual impotence,
alcoholism, and drug addiction, and promoting smoking cessation. One
engine driving medicalization is the profit to be made from discovering new diseases in need of treatment. Medicalization also contributes
to increasing social control on the part of doctors and health institutions.
Like other aspects of the making of disease, it serves to mystify and
depoliticize the social origins of personal distress. As Waitzkin (p. 41)18
observes, medicalization transforms a problem at the level of social
structurestressful work demands, unsafe working conditions, and
povertyinto an individual problem under medical control.
Finally, Frankenberg asserts the importance of making social of disease, which entails both the revelation of the structure of social relationships that shape the making of disease and the social roles, behaviours,
locations and messages involved in the making individual of disease.
First, revealing the making social of disease, which for Frankenberg is
a fundamental mission of medical anthropology, involves research and
analyses that help to uncover the part played by and nature of the social
relations active in the making of new diseases or the converting of old
ones to new purposes. The initial construction of the disease (later
called) AIDS, for example, is illustrative. Historical analysis of the
beginning of the epidemic suggests that the first reports of this life
threatening disease triggered a process of social construction involving
presenting AIDS as a gay plague20. On July 4, 1981, the CDCs Morbidity and Mortality Weekly Report carried an article entitled Kaposis Sarcoma and Pneumocystis Pneumonia among Homosexual MenNew
York and California. This linkage of a rare cancer with a rare pneumonia in a geographically dispersed population defined by a socially vilified
sexual orientation was startling. The story was picked up immediately in

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both the New York Times and the Los Angeles Times, and soon found
its way into the mass media throughout the country. But epidemiologists
and other health researchers were puzzled by the epidemic that appeared
to be breaking out around them. Whereas it was clear that the disease
was linked to a breakdown in the bodys natural defence system, the
cause of immunosuppression was unclear. Was it the result of environmental conditions, dietary practices, a promiscuous fast-lane gay lifestyle,
or the inhalation of amyl or butyl nitrite poppers to enhance sexual or
dance-floor arousal? There was less uncertainty, or so it seemed, about
who was becoming ill. The new disease complex was portrayed as if it
singled out and attacked only gay men, particularly those with promiscuous lifestyles. Ultimately the term gay-related immune deficiency (GRID)
was coined to label the new disease. Later the burden of being labelled as a
risk group was extended to other socially marginal groups, including drug
users, the lovers and sexual partners of drug users, and Haitians. Eventually, however, it became undeniable that AIDS was infecting diverse populations and that it had been doing so from early on in the epidemic. The
damaging stigma of AIDS, however, was already ingrained in the popular
imagination.
The making social of AIDS2125 has involved historic and ethnographic
analysis to reveal the relationship between the spread of the disease and the
ways it has been portrayed and responded to in light of reigning structures
of inequality. It has been shown that AIDS tends to spread along the
fault lines of . . . society and becomes a metaphor for understanding . . .
society (p. 2)26; in so doing, it has exposed the hidden vulnerabilities
in the human condition (p. 128)27. In other words, while certainly a
biological phenomenon, AIDS cannot really be understood only in biological or clinical terms. AIDS, the disease, interacts with human societies
and the social relationships that constitute them to create the global
AIDS pandemic, that is, the global distribution of the disease and the
social response to it in particular groups and populations. Glaring social
disparities (e.g. majority versus minority, wealthy versus impoverished,
dominant versus subordinate populations) in the distribution of AIDS,
as well as access to AIDS treatment, have typified the epidemic.
Second, the making social of disease involves a critical deconstruction
of the making individual of disease using the lens of social contextualization, specifically contextualization in terms of disparities in medicine
and in society generally. Moving from biological to social aetiology, the
making social of disease includes assessment of the social conditions
(including features of the physical environment that reflect social conditions) that directly or indirectly put individuals at heightened risk for
disease, social differences in health care quality and access, the biology
of inequality (e.g. low stature as a result of malnutrition), and the social
construction of medicine as practice, as institution, and as ideology,

Social origins and expressions of illness

I come from Middletown and at the time there was not too many Blacks or
Hispanics there. From kindergarten on up to until eleventh grade, the children
really severely picked on me. I mean really bad. They had to take me out of
classrooms because the children constantly picked on me so badly that theyd
disturb the teacher . . . I couldnt take school buses. I couldnt go to any school
functions or anything. I just couldnt take it any longer and that is the way I
grew up . . . I dont remember how I started to smoke reefer but I remember how
it made me feel, the courage it gave me to be able to . . . stand up to people . . .
I started with reefer but then, many years later, I stared [injecting] cocaine . . . I
was seven and a half months pregnant. I didnt even think about the baby at
that time. I just wanted out. My purpose was to OD [overdose] off the caine . . .
[But] I totally forgot about the suicide and I just started liking the feeling it was
giving me . . . I think it was the feeling that Id been looking for that I could feel
like everybody else, normal, that was the feeling caine gave me.
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including the social functions of medicine in society. For example,


numerous medical anthropologists2830 have pointed to the fundamental
importance of structural violence, discrimination and stigma, in the generation of no small part of the suffering that finds expression as symptoms presented for biomedical intervention. The term oppression
illness has been used in some medical anthropology analyses to focus
attention on the social origin of these types of health complaints28.
Oppression Illness (OI) is used to label the chronic, traumatic effects of
experiencing social bigotry over long periods of time (especially during
critical developmental periods of identity formation) combined with the
negative emotional effects of internalizing prejudice. Oppression illness,
in other words, is a product of the impact of suffering from social mistreatment based on bigotry and, at some level, accepting blame for ones
suffering as just retribution for someone who does not deserve better
treatment. Individuals who suffer from OI, it is argued, not only have
very low self-esteem, but in addition embrace, at least to some degree,
prevailing negative social stereotypes about their ethnic group, social
class, gender, or sexual orientation. As this description implies, OI is a
type of stress disorder. The source of stress is being the object of widespread and enduring social discrimination, degradation, structural violence and abusive derision. OI, in other words, is a product of an
oppressive social environment and a structure of oppressive social relationships with multiple reinforcers of significantly devalued individual
and group worth.
This pattern of symptoms is seen commonly, for example, among drug
users; indeed illicit substance abuse may represent a form of self-medication
for OI. The end result, however, is that individuals are put at heightened
risk for a range of other health problems including AIDS. For example,
an African American injection drug user interviewed during Project COPE
in Hartford, CT31 explained her drug use in the following way:

Cultures of health, cultures of illness

Ironically, while drug use has been defined as a disease by major public health
institutions, incarceration for petty crimes related to drug use rather than
effective drug treatment is the standard social intervention for many street
drug users.

Conclusion

Notes
a
b

The chief business of the American people is business. Calvin Coolidge speech in Washington, January 17, 1925.
revolutiona (a propensity to revolt), drapetomania (desiring freedom from slavery), dysaethesia
aethipis (intentional acts of mischief by slaves), onanism (masturbation).

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Anthropologist Ronald Frankenberg has called attention to the making
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