Hensel Twins: Aggrandized Presentation

Schappel Twins: Exotic & Comic Presentation

(Exotic Presentation)

                          LORI & DORi SCHAPPEL (comic)

Talk Television and the "modern freak show".

• What are the similarities and differences between these presentations?
• How might Exotic vs Aggrandized modes of presentation be understood through these documents?
• Identify "primal scenes in sociology"
• What cultural values are expressed in these presentations?

CONJOINED TWINS FIND LOVE: Article Click Here

One of Us: Conjoined Twins

One of Us

Anatomy Matters:

• It influences the assumptions people make on the basis of our anatomies
• It limits and effects what we can experience in any given context
• Anatomically based rules help to maintain order

Anatomical Normalization

• Most of us go through minor normalization procedures every day- change body to fit the identity we want to present socially
• But some things cannot be normalized
• IMPOSITION of normalization on children by adult
• Form of pity
• Pity silences the receiver of it
• Child’s anatomy is changed to fit the social context (desired)

Conjoined Twins and the notion of Individuality

• Trapped in such a way that makes a normal happy life impossible
• Usually they feel that they are perfectly normal
• Intentionally “sacrifice” one conjoined twin to save another
• What is the CULTURAL CONTEXT in which parents and doctors make these decisions about surgery
• Expose the SOCIALLY TENUOUS NATURE of all human anatomies and raise the question of who should count as NORMAL
• INTERSEXED CHILDREN: goal-make them look and cat like normal boys and girls
• Assumptions: none could be happy. Would be cruel to leave them like that 
• (but many inter-sexed people disagree and feel mutilated and robbed after such operations)

LIMITS OF INDIVIDUALITY

• Singletons see conjoinment as a “fleshy prison” which limits individuality and freedom.
• Makes public a physical intimacy that should be private (like breastfeeding)

Bunker Twins (Siamese) Chang & Ang

• Could have been separated today
• Led normal lives with wives and children
• Doctors of the day felt they had a certain RIGHT to their bodies
• Separation is necessary for the development of a healthy SOCIAL BODY (reaffirms social norms…there are ONLY women & men!) 
• More worried about interracial marriage thatn marriage to conjoined twins

Hilton Sisters:
click here

Types of Con-joinment

• PARASITIC TWINS
• May be unaware of this if it ceases to develop embryonically
• May be fully realized but not “alive” or without a head
• FACTS
• Unusual occurrence, but happens with some regularity
• 2/3 are women
• 40% are stillborn
• 35 % dies within one day because of profound medical problems
• Viable conjoined twins are very rare
• What the body DOES:
• Two people who can never eat, defecate, have sexual relations, or any other privacy defies imagination
• One withdrawals and stays emotionally distant during the other’s sex
• Individuality in American culture
• Individualism=independence
• Interdependence=weakness
• You must show yourself to be different, separate, unique, and distinguishable from all others
• We don’t even like when twins dress the same way (creepy)
• Does NOT mean being integrated into a community as it does in many traditional societies
• American story is the struggle against the system for individual rights

MONEY IS AVAILABLE FOR SEPARATION SURGERY, BUT NOT FOR RESOURCES TO LIVE AS CONJOINED TWINS!

Hensel twins

• Work out explicit negotiations about every day to day task.
• Model in cooperation
• Think of themselves as individuals
• Speak of themselves in the first person or as proper noun

DECISIONS TO SEPARATE

• Seen as a purely medical issue
• Need of a cure regardless of their medical (health) condition
• Parent’s psychology:
• Think of teasing
• See it as a reflection of their imperfections
• Imagining what all their lives will be like
• Part of the grieving process absent the birth of a normal child
• KNOW how to PARENT a normal child…surgical reconstruction will do this
• Give them a normal (sex) life
• When Normalization works
• Reduces shame
• Can achieve heroism
• Always left with abnormalities and often lives of repeated surgery and medical problems.
• Case where one twin was assigned as a boy, and one as a girl

Multiple stigma (mental illness and black youth) example

STIGMA OF MENTAL ILLNESS FOR BLACK YOUTH

There is more than one way to skin a coon

The American Cancer Society Or There Is More Than One Way to Skin a Coon - Poem by Audre Lorde

Of all the ways in which this country
Prints its death upon me
Selling me cigarettes is one of the most certain.
Yet every day I watch my son digging
ConEdison GeneralMotors GarbageDisposal
Out of his nose as he watches a 3 second spot
On How To Stop Smoking
And it makes me sick to my stomach.
For it is not by cigarettes
That you intend to destroy my children.

Not even by the cold white light of moon-walks
While half the boys I knew
Are doomed to quicker trips by a different capsule;
No, the american cancer destroys
By seductive and reluctant admission
For instance
Black women no longer give birth through their ears
And therefore must have A Monthly Need For Iron:
For instance
Our Pearly teeth are not racially insured
And therefore must be Gleemed For Fewer Cavities:
For instance
Even though all astronauts are white
Perhaps Black People can develop
Some of those human attributes
Requiring
Dried dog food frozen coffee instant oatmeal
Depilatories deodorants detergents
And other assorted plastic.

And this is the surest sign I know
That the american cancer society is dying- -
It has started to dump its symbols onto Black People
Convincing proof that those symbols are now useless
And far more lethal than emphysema.
___________

A Litany for Survival - Poem by Audre Lorde

'For those of us who live at the shoreline
standing upon the constant edges of decision
crucial and alone
for those of us who cannot indulge
the passing dreams of choice
who love in doorways coming and going
in the hours between dawns
looking inward and outward
at once before and after
seeking a now that can breed
futures
like bread in our children's mouths
so their dreams will not reflect
the death of ours:

For those of us
who were imprinted with fear
like a faint line in the center of our foreheads
learning to be afraid with our mother's milk
for by this weapon
this illusion of some safety to be found
the heavy-footed hoped to silence us
For all of us
this instant and this triumph
We were never meant to survive.

And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full we are afraid
of indigestion
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid

So it is better to speak
remembering
we were never meant to survive 

Poster Presentation: 101

Poster Session 101 (required along with written mini-ethnography)

General format

1. Determine the one essential concept you would like to get across to the audience.
2. Re-read your abstract once again - are those statements still accurate?
3. Determine the size of the poster (if you had read the instructions, you would already know this!).
4. Determine if you have all the elements you'll need for the poster: Bits & pieces?Poster board, glue, razor blades, Band aids . . . Data? Do you have the data you will need? How much time will you need to prepare the data for presentation (tables, photographs, etc.)? Outside agencies? Does material need to be sent out & returned (photographic services, collaborators)?

A word of advice (the first of many; pick and choose what works for you). Preparing a poster will take as much time as you let it. Allocate your time wisely.

• There are always things that go wrong, so do not wait until the last minute to do even a simple task.
• This is a public presentation; by planning carefully, striving to be clear in what you say and how you say it, and assuming a professional attitude you will avoid making it a public spectacle.
• If you have little experience making posters, it will take longer (estimate 1 week at the very minimum).
• Too much lead time, however, encourages endless fussing about. Do the poster to the best of your ability, then go do something else. 

Sketch it out!

Make a sketch of the poster, using 4 inch x 6 inch cards: Arrange the contents in a series of 3, 4, or 5 columns. This will facilitate the flow of traffic past the poster: 

Place the elements of the poster in position:

• The title will appear across the top.
• A brief introduction (3 - 5 sentences) will appear at the upper left.
• The conclusions will appear at the lower right.
• Methods and Results will fill the remaining space. 

The Title banner

This part of the poster includes the title of the work, the authors names, the institutional affiliations, and the poster number.

Think BIG!

1. The title banner should be readable from 15 - 20 feet away.
2. If space permits, use first names for authors to facilitate interactions.
3. Middle initials and titles are seldom necessary, however.
4. Use abbreviations where possible.
5. City names, or even states, often may be dropped from the institutional affiliations.
6. There are seldom rules regarding line justification of the title. Determine if you will left or center justify the text of the title banner once it has been formatted, based upon personal preferences and space constraints.
7. Refer to your meeting guidelines for more details specific to the meeting you plan to attend. 

Title Fonts:

Make it easy on your information-saturated audience.

1. Use a simple, easy to read font. A san serif style, such as Helvetica (Mac) or Arial (IBM), is ideal.
2. Use boldface and all-caps for the title itself.
3. Use boldface and mixed upper/lower case for the authors names.
4. Use plain text, no boldface, and mixed upper/lower case for affiliations.
5. Use boldface for the poster session number (the number you are assigned by the organizing committee). 

Title sizes

The most important parts of the title banner, the title itself and the poster session number, should be readable from about 25 feet away. Your title will lure viewers closer to see your imaginative and exciting study. The rest of the title, and the body of the poster, should be readable from about 10 feet away.

1. The final size of letters in the title itself should be about 1.5 - 2 inches tall. That is about a 96 point size (or 48 points enlarged by 200% when printed.
2. The authors names may be printed smaller, at 72 points (1 - 1.5 inches)
3. Titles (Ph.D., M.D.) are usually omitted, although the meeting organizers may require that the presenting author, student authors, or society members be indicated.
4. Affiliations can be even smaller, at about 36 - 48 points (0.5 - 0.75 inch)
5. The poster session number should be printed separately, at about 96 point size. It typically is placed in the top of the title banner, to the left, right, or at the center. 

Banner assembly:

A one-piece banner is easiest to carry, and some places have an in-house banner-making service. Commercial firms may also offer this service - try a Kinko's or similar company. I've noticed that branches of these companies that are located close to a university are more flexible in meeting academic & scientific needs than those branches located in shopping malls or the business community.

If you choose this route:

• Call the banner service and ask for specific instructions regarding formatting and submission. Here are some Details for those at the KU Medical Center.
• Proofread the banner. Several times.
• Save it to disk. Then back it up onto another disk.

An alternative is to use a laser printer and double-stick tape: 

1. Set the printer output to landscape (wide) format, using 11 x 14 inch paper (you'll have fewer seams than if you use 8.5 x 11 inch paper).
2. Print the title & lay it out on a table. Proofread it now, rather than after you have assembled it!
3. Successive pages should overlap with only a small margin.
4. Trim the overlap off one side of each page, and place a piece of double-stick tape in that position on the other page, then align the successive pages.
5. This process is easier if you have included 2 thin, parallel lines across all pages of the banner, one above the text & one below. These lines will make it easier to align multiple pages. Once the banner is printed and put together, you can trim away the parallel lines with a straightedge & razor blade.

Either method produces a title banner which should be about 4 - 8 inches tall, and which can be rolled into a compact cylinder for travel.

Use of Color

Mount poster materials on colored art, mat, or bristol board:

1. Mat board is available in a large range of colors.
2. Mat board is heavier, making it more difficult to crease the poster while traveling.
3. Mat board has a more durable surface than other art papers.
4. Mat boards is, however, heavier and more difficult to attach to display boards in the poster session.

Use a colored background to unify your poster:

1. Muted colors, or shades of gray, are best for the background. Use more intense colors as borders or for emphasis, but be conservative - overuse of color is distracting.
2. Two to three related background colors (Methods, Data, Interpretation) will unify the poster.
3. If necessary for emphasis, add a single additional color by mounting the figure on thinner poster board, or outlining the figure in colored tape.

Color can enhance the hues or contrast of photographs:

1. Use a light background with darker photos; a dark background with lighter photos.
2. Use a neutral background (gray) to emphasize color in photos; a white background to reduce the impact of colored photos.
3. Most poster sessions are held in halls lit with harsh fluorescent light. If exact colors are important to the data, balance those colors for use with fluorescent lighting. Also, all colors will be intensified; bright (saturated) colors may become unpleasent to view. 

Sequencing contents

The poster should use photos, figures, and tables to tell the story of the study. For clarity, it is important to present the information in a sequence which is easy to follow:

1. Determine a logical sequence for the material you will be presenting.
2. Organize that material into sections (Methods, Data/Results, Implications, Conclusions, etc.).
3. Use numbers (Helvetica boldface, 36 - 48 points) to help sequence sections of the poster.
4. Arrange the material into columns.
5. The poster should not rely upon your verbal explanation to link together the various portions. 

Edit Ruthlessly!

There ALWAYS is too much text in a poster.

1. Posters primarily are visual presentations; the text materials serve to support the graphic materials.
2. Look critically at the layout. If there is about 20% text, 40% graphics and 40% empty space, you are doing well.
3. When in doubt, rephrase that text or delete it. (Keep chanting this mantra: Therealways is too much text. Always too much text.)
4. Use active voice when writing the text; It can be demonstrated becomes The data demonstrate.
5. Delete all redundant references and filler phrases, such as see Figure ...
6. Remove all material extraneous to the focal point of the poster.
7. Since the abstract is usually published, there is no need to repeat it in the poster. The brief introduction should be sufficient to identify the purpose of the study.
8. Since graphs & figures will have explanatory captions, there is no need to label the graphic with Figure 1, Table 2, etc.

The poster is not a publication of record, so excessive detail about methods, or vast tables of data are not necessary. This material can be discussed with interested persons individually during or after the session, or presented in a handout.

Illustrations

The success of a poster directly relates to the clarity of the illustrations and tables.

• Self-explanatory graphics should dominate the poster.
• A minimal amount of text materials should supplement the graphic materials.
• Use regions of empty space between poster elements to differentiate and accentuate these elements.
• Graphic materials should be visible easily from a minimum distance of 6 feet.
• Restrained use of 2 - 3 colors for emphasis is valuable; overuse is not. 

Show no mercy when editing visual materials!

Once again, ruthless editing is very important.

Visual distractions increase fatigue and reduce the probability of viewers giving the poster a thorough read. 

• Restrained use of large type and/or colored text are the most effective means of emphasizing particular points.
• Use short sentences, simple words, and bullets to illustrate discrete points.
• Have the left edges of materials in a column aligned; center alignment produces ragged left & right edges. This makes reading the poster more difficult.
• Avoid using jargon, acronyms, or unusual abbreviations.
• Remove all non-essential information from graphs and tables (data curves not discussed by the poster; excess grid lines in tables)
• Label data lines in graphs directly, using large type & color. Eliminate legends and keys.
• Artful illustrations, luminous colors, or exquisite computer-rendered drawings do not substitute for CONTENT.
• Lines in illustrations should be larger than normal. Use contrast and colors for emphasis.
• Use colors to distinguish different data groups in graphs. Avoid using patterns or open bars in histograms.
• Use borders about 0.5 inches all around each figures. Border colors can be used to link related presentations of data.
• Colored transparency overlays are useful in comparing/contrasting graphic results

Poster text

Double-space all text, using left-justification; text with even left sides and jagged right sides is easiest to read.
The text should be large enough to be read easily from at least 6 feet away. 

• Section headings (Introduction, Methods, etc.); use Helvetica, Boldface, 36 point
• Supporting text (Intro text, figure captions, etc.); use Helvetica, 24 point (boldface, if appropriate)
• If you must include narrative details, keep them brief. They should be no smaller than 18 point in size, and printed in plain text. Remember that posters are not publications of record, and you can always come to the session armed with handouts.

One option is to consider using a larger size (36 pt) for the Conclusion text, and a smaller size (18 pt) for Methods text.

Attempt to fit blocks of text onto a single page:

• This simplifies cutting and pasting when you assemle the poster.
• For the same reason, consider using 11 x 14 inch paper in the landscape mode when printing text blocks on laser printers.

Other options for fonts include Helvetica, Arial, Geneva, Times Roman, Palatino, Century Schoolbook, Courier, and Prestige. Note that these fonts represent a range of letter spacing and letter heights. Keep in mind that san serif fonts (having characters without curliques or other embellishments) are easiest to read.

Finally, be consistent. Choose one font and then use it throughout the poster. Add emphasis by using boldface, underlining, or color; italics are difficult to read.

The Poster's Background

Two basic rules to keep in mind are that

1) Artistry does not substitute for content

2) The fancier the poster, the greater the time investment.

There are several common approaches.

• Some folks use pieces of mat board (or Bristol board) to make a solid background for the entire poster. They may then choose to use a complementary color as a border for important elements of the poster.
• Others use smaller pieces of board to frame only the elements of the poster, leaving spaces between the elements empty.
  Either approach works; the former gives a unified appearance and is easier to hang straight, while the latter is easier to carry to and from the meeting. It is also possible, but often expensive, to have a commercial house reproduce your completed poster as a single large sheet of paper, which can then be rolled into a cylinder for transport.
  The choice of a background (and complement) color is up to you. The general consensus, however, is that softer colors (pastels, greys) work best as a background - they are easiest to view for hours at a time, and offer the best contrast for text, graphic, and photographic elements.

With an increasing reliance placed upon poster presentations for information transfer at meetings, there comes an increased impatience with poorly presented materials.

Although the poster preparation will expand to fill whatever time you allow it, don't be caught with an unfinished poster!

Plan ahead!

You have probably heard this again and again. That is because it is IMPORTANT!

Planning ahead is particularly important if photographs are to be used.

• Allow time for at least two rounds of photographic processing to take place, just in case.
• Custom photo processing may be more expensive, but offers rapid turn-around and precise color balancing.
• Use sufficient enlargement to allow details to be seen at a distance of 6 feet or more. 

Down to the Wire and Beyond

Those who choose to live on the edge should note that:

• Many larger meetings will have computers available for modifying posters. These facilities are, however, usually crowded.
• There are always photo supply stores near the meeting which will sell you poster materials.
• If you are unfamiliar with the city, ask the hotel concierge for local businesses which might be able to help. Remember to tip!
• Many hotels will have photocopy and Fax machines for guest use, and telecommunication ports in the hotel rooms.
• The world of portable computers and the Internet offers interesting possibilities for a graceful recovery. Leave your poster on a server and you can access it from a remote site.
• Before you leave for the trip, make a final backup copy & leave the disk in an obvious place. That way, you can have someone who has stayed behind print portions of the poster and fax then to you.

Miscellaneous comments

• Since a poster is essentially a visual presentation, try to find ways to show what was done - use schematic diagrams, arrows, and other strategies to direct the visual attention of the viewer, rather than explaining it all using text alone.
• Design the poster to address one central question. State the question clearly in the poster, then use your discussion time with individuals to expand or expound upon issues surrounding that central theme.
• Provide an explicit take-home message.
• Summarize implications and conclusions briefly, and in user-friendly language.
• Give credit where it is due. Have an acknowledgements section, in smaller size type (14 - 18 point), where you acknowledge contributors and funding organizations.
• Vary the size and spacing of the poster sections to add visual interest, but do so in moderation.

 ----------------SUMMARY-------------------------------

Below are particular points to consider when putting your poster together:

Ø      Divide the contents of your poster into appropriate sections.  For instance -- title of paper, author, institutional affiliation; abstract; methodology; data; results; conclusions.  Be sure to include each section on a separate sheet(s) of paper.

Ø      Use larger (than 16 font) lettering for the poster's title, author and institutional affiliation.  Make the lettering at least one inch high.

Ø      Avoid fonts that are script or difficult to read.

Ø      If hand lettering is required, use a black felt-tip pen (Sharpie).

Ø      Be concise with your written material.  Save elaborative points for discussion/interaction with viewers.  For conclusions, focus on a central finding that lends itself to informal discussion.

Ø      Use graphs, charts and/or tables (color if possible) to show results. Graphics help make your poster interesting.

Ø      A neutral poster or matte board is more amenable to the eye than a bright colored background.  A splash of color here and there, perhaps highlighting central finding(s) or provocative results, will make your poster "stand out" from the crowd.

Ø      A mailing tube or portfolio case is recommended for transporting your poster.

Ø      Have a notepad handy when presenting at your poster session.  It may be helpful in elaborating on your findings, or for taking names & addresses of people interested in your research.

Audrey Lorde: Managing Multiple Stigma

RACE, ILLNESS (Cancer), SEXUALITY, OBESITY


Published in 1980, this a chronicle of poet Audre Lorde’s experience with breast cancer. She began writing journal entries a few months after her mastectomy.Lorde's eventually died from a recurrence of breast cancer.

When The Cancer Journals was published in 1980, Audre Lorde was already an important feminist poet. She had often criticized the popular feminist movement for focusing exclusively on white women, and she insisted on talking about race and class as compounding forms of oppression (STIGMA), including the racist assumptions white women brought to their feminism.

Audre Lorde asks in The Cancer Journals where she can find a model of how to deal with cancer, an understanding or a guide. She also questions Western medicine and asserts that women should control their own health and healing.

Race & Stigma:

• Racial stigma and inequality The concept of an enduring racial stigma afflicting African Americans suggests that any successful and consistent theory of racial inequality must account for the processes that systematically block realization of their human potential. 
• The rewards accruing to the members of a disadvantaged group, given their productivity, are lower than the rewards garnered by others (call this the reward bias argument). 
• Reward bias (“racial discrimination”) in the public sphere is a relatively straightforward, universally recognized problem. 
• Owing to processes unrelated to their innate capabilities, members of the disadvantaged group lack opportunities to realize their productive potential (call this the development bias argument).
• Developmental Bias: racial disparity in developmental opportunities is often neglected moral problem that gives rise to unavoidable conflicts between cherished values and challenges settled intuitions about social justice. 

Sexuality & Stigma

There are several manifestations of sexual stigma these have been identified as enacted sexual stigma, felt sexual stigma and internalized sexual stigma. (based on Goffman)

• Enacted sexual stigma involves an act of discrimination or violence towards members of a sexual minority group. 
• This type of sexual stigma is not reserved for only members of the group but can be directed to the heterosexual family and friends of the individual or even towards those who allied themselves with the minority group.(contagious nature of stigma)
• This is referred to as a courtesy stigma.
• Felt sexual stigma consists of the apprehensiveness that one might have of being labeled with a sexual stigma based on the views and stereotypes that society has placed on sexual minority members. 
• This type of stigma is most likely to affect behavior because of the wide range of individuals that may be influenced by it. 
• An individual may begin to avoid situations where a stigma could be enacted or by avoiding the majority group overall.
•  Felt stigma can be a motivation to confirm a non-stigmatized status (PASS) instead of possibly having their sexuality questioned.
• Internalized sexual stigma becomes a part of a person’s self-identity as they begin to accept a sexual stigma they feel represents their belief system. 
• Their self-concept supports the idea of a particular stigma that society has created through negative or offensive remarks or actions, which consequently creates negative attitudes toward their own personality and sexuality. 
• In other words, the stigmatized individual begins to believe the negative views held against them, and begin to conform to common stereotypes.

Women's Health & Empowerment: "Cancer Inc."

Audre Lorde writes that battling despair means surviving and fighting, and it  means knowing that her work is part of a continuum of women’s work. 

• She questions the powerful medical establishment's insistence on prosthetics and other advances to help people look “normal.” (REFUSES TO COVER OR PASS)
• Believes that an insistence on being physically normal interferes with a woman’s ability to heal. 
• Wants to see women who with cancer as proud survivors

Silence is the Enemy:

Audre Lorde writes that when she was told her tumor was probably malignant she began contemplating her mortality. 

• She found that what she most regretted were her silences. 
• The book transforms silence, turning it into words and thus action.

Blaming the Victim = must hide masectomy

AIDS and its Stigmas: Jeanine Cogan & Gregory Herek (1998)

• 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. 

Films and AIDS

Longtime Companion 1989

Parting Glances 1986

Philadelphia 1993

Miss Gee, by W.H. Auden

Miss Gee 

 Let me tell you a little story
   About Miss Edith Gee;
 She lived in Clevedon Terrace
   At number 83.

 She'd a slight squint in her left eye,
   Her lips they were thin and small,
 She had narrow sloping shoulders
   And she had no bust at all.

 She'd a velvet hat with trimmings,
   And a dark grey serge costume;
 She lived in Clevedon Terrace
   In a small bed-sitting room.

 She'd a purple mac for wet days,
   A green umbrella too to take,
 She'd a bicycle with shopping basket
   And a harsh back-pedal break.

 The Church of Saint Aloysius
   Was not so very far;
 She did a lot of knitting,
   Knitting for the Church Bazaar.

 Miss Gee looked up at the starlight
   And said, 'Does anyone care
 That I live on Clevedon Terrace
   On one hundred pounds a year?'

 She dreamed a dream one evening
   That she was the Queen of France
 And the Vicar of Saint Aloysius
   Asked Her Majesty to dance.

 But a storm blew down the palace,
   She was biking through a field of corn,
 And a bull with the face of the Vicar
   Was charging with lowered horn.

 She could feel his hot breath behind her,
   He was going to overtake;
 And the bicycle went slower and slower
   Because of that back-pedal break.

 Summer made the trees a picture,
   Winter made them a wreck;
 She bicycled to the evening service
   With her clothes buttoned up to her neck.

 She passed by the loving couples,
   She turned her head away;
 She passed by the loving couples,
   And they didn't ask her to stay.

 Miss Gee sat in the side-aisle,
   She heard the organ play;
 And the choir sang so sweetly
   At the ending of the day,

 Miss Gee knelt down in the side-aisle,
   She knelt down on her knees;
 'Lead me not into temptation
   But make me a good girl, please.'

 The days and nights went by her
   Like waves round a Cornish wreck;
 She bicycled down to the doctor
   With her clothes buttoned up to her neck.

 She bicycled down to the doctor,
  And rang the surgery bell;
 'O, doctor, I've a pain inside me,
   And I don't feel very well.'

 Doctor Thomas looked her over,
   And then he looked some more;
 Walked over to his wash-basin,
  Said,'Why didn't you come before?'

 Doctor Thomas sat over his dinner,
   Though his wife was waiting to ring,
 Rolling his bread into pellets;
   Said, 'Cancer's a funny thing.

 'Nobody knows what the cause is,
   Though some pretend they do;
 It's like some hidden assassin
   Waiting to strike at you.

 'Childless women get it.
   And men when they retire;
 It's as if there had to be some outlet
   For their foiled creative fire.'

 His wife she rang for the servent,
   Said, 'Dont be so morbid, dear';
 He said: 'I saw Miss Gee this evening
   And she's a goner, I fear.'

 They took Miss Gee to the hospital,
   She lay there a total wreck,
 Lay in the ward for women
   With her bedclothes right up to her neck.

 They lay her on the table,
   The students began to laugh;
 And Mr. Rose the surgeon
   He cut Miss Gee in half.

 Mr. Rose he turned to his students,
   Said, 'Gentlemen if you please,
 We seldom see a sarcoma
   As far advanced as this.'

 They took her off the table,
   They wheeled away Miss Gee
 Down to another department
   Where they study Anatomy.

 They hung her from the ceiling
   Yes, they hung up Miss Gee;
 And a couple of Oxford Groupers
   Carefully dissected her knee.

-- W H Auden

Sontag on Illness and Its Metaphors

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