Stigma and Illness/Stigma and AIDS

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 of 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

·    De-sexualizing

·    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 (melancholy) 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

§  Naivety

§  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 BASTION 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

·    LEPROSY & CANCER & syphilis & 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

Facts about HIV Stigma

What is HIV stigma?

HIV stigma is negative attitudes and beliefs about people living with HIV. It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable.

Here are a few examples:

• Believing that only certain groups of people can get HIV
• Making moral judgments about people who take steps to prevent HIV transmission
• Feeling that people deserve to get HIV because of their choices

What is discrimination?

While stigma refers to an attitude or belief, discrimination is the behaviors that result from those attitudes or beliefs. HIV discrimination is the act of treating people living with HIV differently than those without HIV.

Here are a few examples:

• A health care professional refusing to provide care or services to a person living with HIV
• Refusing casual contact with someone living with HIV
• Socially isolating a member of a community because they are HIV positive
• Referring to people as HIVers or Positives

What are the effects of HIV stigma and discrimination?

HIV stigma and discrimination affect the emotional well-being and mental health of people living with HIV. People living with HIV often internalize the stigma they experience and begin to develop a negative self-image. They may fear they will be discriminated against or judged negatively if their HIV status is revealed.

“Internalized stigma” or “self-stigma” happens when a person takes in the negative ideas and stereotypes about people living with HIV and start to apply them to themselves. HIV internalized stigma can lead to feelings of shame, fear of disclosure, isolation, and despair. These feelings can keep people from getting tested and treated for HIV.

What causes HIV stigma?

HIV stigma is rooted in a fear of HIV. Many of our ideas about HIV come from the HIV images that first appeared in the early 1980s. There are still misconceptions about how HIV is transmitted and what it means to live with HIV today.

The lack of information and awareness combined with outdated beliefs lead people to fear getting HIV. Additionally, many people think of HIV as a disease that only certain groups get. This leads to negative value judgements about people who are living with HIV.