Illness as metaphor: Susan Sontag

 In 1978 Susan Sontag wrote Illness as Metaphor, a classic work described by Newsweek as "one of the most liberating books of its time." A cancer patient herself when she was writing the book, Sontag shows how the metaphors and myths surrounding certain illnesses, especially cancer, add greatly to the suffering of patients and often inhibit them from seeking proper treatment.By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is -- just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment and, it is highly curable, if good treatment is followed.

"Susan Sontag's Illness as Metaphor was the first to point out the accusatory side of the metaphors of empowerment that seek to enlist the patient's will to resist disease. It is largely as a result of her work that the how-to health books avoid the blame-ridden term 'cancer personality' and speak more soothingly of 'disease-producing lifestyles.' She asserts that the most truthful way for regarding illness is the one most purified of metaphoric thinking. A disease should be regarded as a disease, not as a sign of some terrible law of nature or an otherwise unnameable evil.

The gross mythology of tuberculosis did not persist after the discovery of streptomycin in 1944 and the introduction isoniazid in 1952. The sinister mythology of cancer will not be likely to persist after the causes of the disease are known and a successful treatment is produced. "As long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have." (Sontag)
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SUSAN SONTAG: Illness as Metaphor

Illness is the NIGHT SIDE of life, it is used in our culture as a FIGURE or METAPHOR

            Examples: Cancer & TB…

·    these diseases are capricious,

·    they a little understood.

·    Considered ruthless, secretive and invasive.

·    They are felt to be morally, if not literally contagious.

·    Felt to have magical powers

In the popular imagination, CANCER=DEATH

Cancer: “anything that frets, corrodes, corrupts or CONSUMES slowly and secretively (OED 1528)

·    Conceal the truth to patients

·    Process is expected to be horrid kind of death

·    Symptoms are invisible until it is too late

·    Desexualizing

·    Idleness, slowness, sloth, loss of appetite

·    Degeneration caused by invasion

·    Demonic pregnancy (pregnant with your own death)

·    No help

·    Painful death (horrid)

·    BODILY DISEASE

Tb: definition of pulmonary = CONSUMPTION

·    Disintegration (consumed)

·    secretive

·    deceptive symptoms (rosy cheeks, mania, thinness as attractive, appetite)

·    speeds up life, highlights it spiritualizes it

·    highly contagious

·    liquid: phlegm, mucus, blood

·    help by changing to a warm dry environment (anti-cold & wet)

·    painless (romantic death)

·    SPIRITUAL DISEASE

DISEASE OF PASSION: both cancer & Tb

       
         TB: too much

        Cancer: Too little

·    Both about the lack of balance in the vital energies

·    TB (Victorian)-ROMANTICIZING

§  Individuality is fist stressed+ people were made singularly more interesting by their illnesses

§  SADNESS (meloncholoy) became synonymous with TB: also prone for creative and sensitive types like artists and poets

§  Pretext for leisure and travel invented by the romantics- RETIRING from the world without having to take responsibility for it

§  Sex as a cure

§  Naivity

§  Passionate

§  Too sensitive for this world

§  More complex psychologically which guarantees poor health, but great intellectual and moral virtue

§  Makes sufferer sexy

§  Genteel, delicate, APPEALING VULNERABILITY

§  Glamorous too look sickly and rude to eat heartily in the 18^th & 19^th century—fashionable to be pale and drained

§  ISOLATES one from the community (unlike plagues---cancer too!)

IS THIS WHERE THE 20^TH CENTURY CULT OF THINNESS COMES FROM? THE LAST BASTIAN OF THIS ROMANTICIZING OF WAIFDOM? (became appealing for women but not men by the end of the 18^th century)

·    In the modern era, this same metaphor is given to INSANITY (not cancer or TB)…confined to a sanatorium

·    Fits patients character as a PUNISHMENT fits the SINNER (Christian view of disease)

Psychological notions of disease

·    Specific emotions produce specific illnesses

·    Stress produces illness

·    The correct attitude can make you well

EXPANDED CATEGORY OF ILLNESS

·    Every social deviation can be considered illness

·    Illnesses need not be punished, but understood

PUNITIVE NOTIONS OF DISEASE

·    LEPROCY & CANCER & syphillus & TB (now diseases of INDIVIDUALS)…plagues in the past

Cancer is not about PAMPERING the PATIENT like with TB

·    Under attack, attack back with treatments

·    Insult to the natural order-MUTATION

·    Natures revenge on our technological modern world

DISEASES ARE REFLECTIONS OF OUR CULTURE

·    TB was thought to be from foul air (from houses)

·    Cancer from the pollution of the whole world-REJECTION OF THE CITY

·    FORESIGHT is the sure (catch it early) just like in our social understanding

·    When society (environment) is in good health, disease can be managed and overcome. If not, disease will persist and may even beat us

§  French revolution: peasant disturbances as a plague on the nation

§  Nazis: jews as a syphilis on culture---radical treatment…cut them out, eliminate them (identified with city life as well)

§  AIDS: Haitians, homosexuals, keep them out, eradicate them

§  5to call something a cancer implies that it must be REMOVED

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• AIDS-related stigma refers to a pattern of prejudice, discounting, discrediting, and discrimination directed at people perceived to have HIV/AIDS, their significant others and close associates, and their social groups and communities. 
• As with other diseases throughout history, such as the Black Death in the fourteenth century and cholera in the nineteenth century, a stigma has been attached to AIDS as a result of both fears surrounding contagion and preexisting prejudice against the social groups most seriously affected by the epidemic. 
• Like AIDS itself, the AIDS stigma is a global problem. It is manifested around the world through ostracism of people with AIDS (PWAs), discrimination against them, and, in a few countries, quarantines.
• In the United States, the AIDS stigma has been evident in negative attitudes, discrimination, and violence against PWAs and people perceived to be HIV infected. 
• coercive measures such as 
• quarantining of HIV-infected persons, 
• universal mandatory testing, 
• laws making it a crime for people with HIV/AIDS to have sex, and 
• mandatory identification cards for PWAs. 
• Negative attitudes have also been manifested in behavior. 
• AIDS discrimination in employment, housing, school policies, and services has been widespread. 
• Employers have refused to provide insurance coverage for employees with AIDS; 
• property owners have refused to rent to PWAs or have evicted them; 
• parents with AIDS have been faced with legal battles concerning child custody and visitation rights; and 
• PWAs have experienced unwarranted demotions, dismissals, and harassment in the workplace. 
• In addition, some PWAs have been targets for violent attacks because of their HIV status.
• At least four specific characteristics affect the extent to which any disease is likely to be stigmatized. 
• First, a stigma is more likely to be attached to a disease whose cause is perceived to be the bearer's responsibility.
•  The two most common routes of HIV infection in the United States, sexual intercourse and sharing contaminated drug paraphernalia, are widely perceived as controllable and therefore avoidable behaviors. 
• Second, greater stigma is associated with conditions that, like AIDS, are perceived to be unalterable or degenerative. 
• Third, greater stigma is associated with conditions that are perceived to be contagious or to place others in harm's way. 
• Concern about contagion not only exists in the physical realm but also extends to fears that one will be socially or morally tainted by interacting with the stigmatized individual. 
• Finally, a condition tends to be more stigmatized when it is readily apparent to others and is perceived as repellent, ugly, or upsetting. 
• In its more advanced stages, AIDS often causes dramatic changes to one's appearance.
•  Of considerable additional importance is the fact that the AIDS epidemic in the United States has occurred primarily among marginalized groups, such as gay men, injecting drug users, and Haitians, and has been defined socially as a disease of these groups. 
• Consequently, the stigma attached to AIDS also serves as a vehicle for expressing preexisting hostility toward members of disliked social groups.
• In the United States,  the AIDS stigma has been focused principally on homosexuality. 
• Societal and individual reactions to AIDS have often provided a vehicle for expressing condemnation of homosexuality and hostility toward gay men and lesbians. 
• Heterosexuals' attitudes toward gay people have been consistently shown to correlate strongly with their AIDS-related fears, attitudes, and beliefs.
• Acceptance of homosexuality was at its height BEFORE the AIDS epidemic. 
• Furthermore, gay men with AIDS are more negatively evaluated or blamed for their illness than are heterosexuals with AIDS. 
• As the face of the epidemic in the United States changes, it is likely that symbolic expressions of the AIDS stigma will broaden to reflect public hostility to an increasing degree toward other marginalized groups such as immigrants, the poor, and communities of color.
• Because of the AIDS-related stigma, PWAs must bear the burden of societal hostility (stigma) at a time when they urgently need social support. 
• In addition, some PWAs internalize societal stigmatization (Goffman),which can lead to self-loathing, self-blame, and self-destructive behaviors. 
• The AIDS stigma also deters people at risk for HIV from being tested and seeking information and assistance for risk reduction.
• Because of the stigma of AIDS, many people may distance themselves from the disease and deny their potential risk. 

Longtime Companion 1989

Parting Glances 1986

The Ban Played On

Ending the Military Metaphor

Violence and warfare have been humanity’s constant companions for millennia. The 20th century alone witnessed two unprecedented world wars that claimed almost eighty million lives, followed by a cold war that lasted more than three decades. 

• Due to a long history of conflict, military metaphors have pervaded many human endeavors, including medicine. However, the widespread use of these metaphors in medicine is ironic given that one of medicine’s primary goals has always been to save lives and to treat injuries caused by acts of collective violence. 
• Despite this inherent irony, military metaphors are today deeply embedded in the public and professional discourse of medicine and find wide use in public policy and social programs, in clinical practice, and in research, including HIV cure research. 
• Why is it that healers, clinical doctors, and researchers committed to improving health continue to utilize violent metaphors when doing so runs the risk of devaluing human life?

There are latent but serious problems associated with use of this language and symbolism in HIV cure research. Similar concerns with the proliferation of health-related military metaphors have led previous authors to call for the promotion of less violent alternatives (Sontag 1990).

• Are there more peaceful alternatives to the nascent HIV cure field? 
• non-Western traditions of thought from China and sub-Saharan Africa provide an alternative
• Given the emergent nature of HIV cure research, ample opportunity currently exists to break with biomedicine’s more violent tropes in order to develop and apply metaphors that emphasize human well-being.

t is necessary to examine the metaphors embedded and embodied in biomedical discourse whose moral implications are often not scrutinized explicitly. 

• the bioethical importance of the language and symbolism used in relation to new medical technologies and interventions within HIV cure research.

The Force and Nature of Metaphors

Metaphors in language are NOT used mostly for ornamental purposes-in order to add a touch of aesthetical upliftment to otherwise prosaic language. Rather, the ornamental conception of metaphor has increasingly been replaced by interactive and creative theories of metaphor.

• Metaphor was originally defined by Aristotle as: “giving something a name that belongs to something else; the transference (‘epi-phora’) being either from genus to species, or from species to genus, or from species to species, or on the grounds of analogy … metaphors are constituted on the basis of our ability to see the similarity in dissimilars” (Aristotle 1968). 
• metaphor has a cognitive function: 
• it decidedly contributes to the extension of our knowledge of the world. 
• metaphor opens up an insight into the nature of the world that is only accessible via the metaphor; every effort to paraphrase the metaphor is less interesting than the original metaphorical expression itself 
• The remarkable juxtaposition (“similarity”) of these seemingly unrelated (“dissimilar”) phenomena opens up a new insight about successfully exploiting the fortunate moments in human life that would not have been possible without the metaphor. 
• A correct understanding of metaphor therefore reveals its fundamental and inalienable role, not only in our thinking about the world, but in the way the world discloses itself to us. 
• Metaphor creates new reality, and describes that new reality at the same time (Ricoeur 1973).

Military metaphors in Western medicine date back at least to the 17th century

• The use of “eradicating”, “annihilation”, “battle”, “destroy”, and “attack the enemy” with reference to his approach to the treatment of disease, 
• Western medicine originally drew on notions related to “balance” and the humors in approaches to disease. 
• Over time, diseases gradually became reified as discrete, targetable “entities” and medical attention shifted away from patients as the objects of interest.

In the 19th century, alongside the rising prominence of Germ Theory, Louis Pasteur (1822–95) adopted and promoted military metaphors of disease and played a key role in firmly rooting them within the larger discourse and practice of medicine. 

• Patients were reduced to the metaphorical battlefields on which physicians would meet, and hopefully defeat, their enemies. 
• patients came to be seen by medical researchers as “‘clinical material’” Cohort, from the Latin cohors, originally referred to a Roman military unit, which can be understood as “… a set of identical and ultimately expendable soldiers to be used to the most useful advantage in winning the battle” 

Beginning in the early 20th century (and extending to present day), a series of “wars” have been declared to fight various diseases which include most notably acute infectious diseases  

• tuberculosis 
• cancer 
• AIDS
• diabetes 
• obesity
• addiction
• While these “wars” against acute (mostly) infectious diseases remain unfinished, significant strides have been made as a result of the invention of antibiotics, anti-retroviral drugs, the widespread use of vaccination and other public health measures, as well as the improvement in living standards. 
• Medical therapies (especially antibiotics) have become weapons; and an “inappropriately aggressive attitude” within medical practice has at times led to unnecessary procedures and over-prescription
• In the aftermath of WWII, traits associated with recent American victories on the battlefield, namely “determination”, “courage”, and “perseverance”, were transferred to efforts to cure cancer, and surgeons of the day were “only too happy to become the soldiers of the postwar era” 
• More recently, in the post 9/11 era some cancer patients have come to associate their diseases with terrorism.
• Conspiracy theories are spawned by this?

The anthropologist Emily Martin (after Sontag) has written extensively on conceptualizations of the body in the late 20th century. 

• She describes in great detail how lay and scientific understandings of the immune system, as well as HIV, have been shaped by the metaphors of warfare and the nation-state. 
• Today, phrases like the following are so common to medicine that their military connotations pass almost unnoticed: 
• “pathogens (bacteria or viruses) invading or attacking”, 
• “the body’s defenses”, 
• “medical intervention”, 
• “doctor’s orders”, 
• “the magic bullet”, 
• “fighting diseases”, 
• “the patient’s condition is under control”, 
• “the patient is winning or losing the fight”, 
• “medicine as a battle against death and disease”. 
• In the wake of the near miraculous advancements and successes of modern combination antiretroviral therapy (ART), HIV and immune system-linked military metaphors are being revived and given new significance within efforts to find a cure for HIV.

a Nature (2012) manuscript called “Shock and Kill” was published. Conceptually, 

• “shock and kill” refers to HIV cure strategies that target latent “reservoirs” of HIV within the body. 
• HIV eradication might be achievable if drugs can be found which “shock” latently HIV infected cells into a replicative state so that the virus can be “targeted” and “killed” by anti-retroviral therapy or other cure interventions (Deeks 2012).
• New England Journal of Medicine (1995)-“Time to Hit HIV, Early and Hard” .  
• In the article, Ho depicts HIV as a “relentless” attacker that must be met by “early aggressive treatment” in the form of new therapeutic “weapons”. 
• “shock and kill” echoes the American military slogan of “shock and awe” defined in the Oxford Dictionary of Phrase and Fable as “…a military strategy based on achieving rapid dominance over an adversary by the initial imposition of overwhelming force and firepower”
• In 2011, when HIV cure research was first coming into public prominence, some researchers and commentators in the popular media reached for the phrase “shock and awe” when describing the potential for functional cures and new technologies to disrupt HIV latency.
• These aggressive metaphors for treatment and what must be done to the “enemy” virus continue to dominate the public and professional discourse on HIV. 
• HIV cure research offers a unique opportunity to revisit and take stock of the appropriateness of military metaphors. 
• The early days of the HIV epidemic were marked by a “siege mentality” that activism and advances in treatment have gradually helped to temper. 
• To the extent that HIV is a highly treatable, chronic condition, the militarized rhetoric of “attack” and “defense” have become increasingly less apt, and recourse to these metaphors may represent regression toward past tendencies marked by stigmatization, exclusion, and discrimination. T
• HIV cure lends itself much more easily to talk of “annihilation” and “eradication” with its goal to gain complete “victory” over the virus. 
• Military metaphors may have some beneficial aspects. 
• In clinical practice, their use may help to enhance the morale of patients and healthcare professionals alike with respect to the healing process, especially when the problems involved are serious and life-threatening. 
• some people living with HIV “embrace warfare imagery wholly and use it creatively to organize their experience of mortal threat” 
• At the communal level, they may help whole societies to mobilize human, economic, and social resources for healthcare and medical research.
• Despite these advantages, military metaphors have a number of serious drawbacks. 
• They can reinforce the biomedical model by giving undue emphasis to the physical and biological aspects while downplaying, if not totally ignoring, the psychological, spiritual, communal, and social dimensions of illness and healing. 
• it has been pointed out that, by silencing patients’ voices through erasing their experiences and narratives of illness, the use of military metaphors can hinder the medical profession and society in general in their work of caring for people suffering from the increasing incidence of chronic health conditions.
• medical science has been harnessed for nefarious purposes in actual wars, as the inhuman experimentation conducted by German and Japanese physicians and scientists during the Second World War demonstrates. 
• The exigency of war has been used to vindicate unethical research as exemplified by secret dealings between the United States and Japan for the exchange of data needed to develop more effective biological weapons in the context of the looming Cold War
• the war metaphor has contributed to justifications for unethical research such as the U.S. Public Health Service’s studies in Tuskegee and Guatemala. 
• Attempts to win the “war” against syphilis and other sexually transmitted infections led to the deliberate infection of people with these diseases for the purposes of research as “normal exposure” 
• Susan Sontag – Illness as Metaphor (1990), 
• metaphors of illness are deeply embedded within the complex cultural and social milieu of the West. 
• dangers implicit to metaphorical thinking in medicine
• a shift from fighting the disease to fighting the patient; 
• an increased risk of stigmatization; 
• a tendency to impose unnecessary suffering on the patient. 
• “It overmobilizes, it overdescribes, and it powerfully contributes to the excommunicating and stigmatizing of the ill” (1990, 182).
• “…illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphorical thinking” (1990, 3). 
• Sontag advocates for the need “to calm the imagination” and “to deprive something of meaning”, i.e. to take up a stance “against interpretation” (1990, 102). 
• It is an imperative to regard cancer or any other illness: “…as if it were just a disease—a very serious one, but just a disease. Not a curse, not a punishment, not any embarrassment. Without “‘meaning”’ (1990, 102; All italics added). 
• Sontag concludes her two penetrating and passionate inquiries into language, illness, and medicine by calling for the complete retreat of military metaphor; paraphrasing Lucretius, to “give it back to the war-makers” (1990, 183).
• For the ill, metaphors prove especially useful and valuable because they reify meanings that help to foster communities of shared experience and support . 
• Abandoning metaphors of illness and medicine altogether is therefore neither a possible nor a desirable endeavor. 
• One solution to avoid the pitfalls described above would be to transform or redeem military metaphors in medicine by attributing new and positive meanings to them.
• A second potential remedy is to develop and put into use realistic and “peaceful”, if not pacifist, alternatives to problematic military metaphors. These new metaphors would ideally serve the same useful functions as their military counterparts, while avoiding negative connotations and other potentially deleterious effects.
• Although military metaphors may generate excitement that draws attention (and funding) to the issue, they also introduce tension and may be problematic. If less fraught alternatives exist, why have they not gained more traction?