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The Historical / Medical / Freakiness of a Millennium World View

By Constance Laymon

graphic of a man trapped within a square walking up the wall of the square
 

This text is an ever changing document which started out as my final paper for "The Politics of Literary Reputation" . . . I would like to thank Dr. Ron Bosco for giving me the options I needed to grow as this text has grown . . . I couldn't have started this project without Dr. Bill Roth exposing me to aspects of Disability Studies during our Independent Study of the same semester . . . each new draft will have its version date listed so you will know that I have revised it . . . as a work in progress it will be rough in plenty of ways . . . remember:  this text is connected to my brain, therefore if you copy it you must reference my brain as author . . . if you extract quotes please make sure you give credit to the correct author as this format can be confusing . . . if you have any questions just email:

 constance@spamcop.net

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Version:  June 19, 2000

“Time's not sleeping and time won't lose
you can't win cause Time can't lose . . .
So stop what you're doing
start on something new
don't – don't be hypnotized
don't start thinking with your eyes . . .”
(Cheap Trick "Tonight It's You").

“My eyes adored you . . .”
(Frankie Valli "My Eyes Adored You").

"You're such a site you're
Looking better than a body has a right to . . . "
(Donnie Iris "Ah!  Leah!").

"Her honor is an essence that's not seen . . ."
(Shakespeare 1227).

 "It is hereby prohibited for any person who is diseased, maimed, mutilated, or deformed in any way so as to be an unsightly or disgusting object to expose himself to public view."
– 1911 City of Chicago Ordinance
  “There is a dramatic quality about the making of the United States which has yet to find its interpreter.  In the development of European nations barbarism gave place to Catholicism, wars shattered dynasties and the printing machine challenged the reservation of knowledge: progress was so gradual that generations passed without perceptible change.
  In America history careers throughout all the stages of civilization like a pageant of the ages.  The Puritans encounter the Red Indian, and once again theology triumphs over the heathen.  The Colonials claim their independence and the wilderness is conquered for the plow.  There follows the long frontier struggle from the Mississippi to the Missouri, carrying the pioneers towards the plains.  But if anyone wishes to get some “jumping-off place” to an elementary knowledge of America, let him study the immigration figures, let him try and imagine what sort of country England would have been if from the continent of Europe, from China, Japan, and Australian convict stations fresh hordes of emigrants had landed year after year, a steady stream of people speaking a score of different languages, divided by racial hatreds and religion, haunted by ancient oppressions and fired by a vision of freedom, of settlement, and wealth.  Mark how the tide came in, wave by wave, from 1850, receding and advancing until the great influx of 1880 and the enormous figures of 1910”(Watson 49 - 50).
Civilization and the Cripple.


“Who controls the past now controls the future
Who controls the present now controls the past
Who controls the past now controls the future
Who controls the present now?”
 (Rage Against the Machine “Testify”).
 

 “To have a disability is to be an animal, to be part of the Other”(Davis 20).

         “The millennium is coming!”  The shrill message blares at us, after all, we have no use for Paul Revere to risk his life by dashing about the countryside on his horse.  We get the message first hand: Television, Radio, Internet, Books, Magazines, Newspapers, Telephones, Rumor, Protests, Clubs – as the Bell Atlantic Yellow Pages’ advertisement shrieks: “If it's out there, it's in here!”  The millennium . . . actually the year 2001 . . . but who is counting?  How interesting that mathematics, as a language of naming, has categorized and quartered off temporality.  The millennium, “over the past thousand years quite a bit has changed”, is an alternative Media rallying cry, as opposed to the year's end rhetoric encompassing the last 365 days, or a focus on the century that has passed, (though these must be mixed into the messages / advertisements somewhere.)  History can be problematic, depending on how closely you look behind the historian, his or her modes and biases, translations and interpretations – the past is mysterious but interesting.  What does it mean to know that if you were alive during the previous century,  you probably would not have survived because you have a disability?  Would you have had any chance to write, to develop a Literary Reputation?  The nineteenth century was a pivotal century for all humans, especially people with disabilities, the one eight zero zero racing toward the one nine zero zero is shaping our lives today as we near this new millennium of two zero zero zero.

 “Our civil calendar is more an artificial contrivance, which is why the year 2000 for our part of the world is not recognized as such in other cultures.  The Buddhists of Southeast Asia count it as the year 1362, for the Japanese it is 2660, and for the Chinese it is the year 4698.  The Hebrew calendar is the temporal heavy weight champ.  By its reckoning, it is 5761, and counting.”(AANEWS 12/31/99).
 “‘In this matter, the State must assert itself as the trustee of a millennial future . . .’”
Adolph Hitler.   (Davis 19).


         As people with disabilities currently argue, protest and lobby for a conceptual equality – legal civil rights – it is helpful to investigate the underlying basis of dis-empowerment as a means of contextualizing why culture operates as it does today.
 

 “The word “normal” as “constituting, conforming to, not deviating or different from, the common type or standard, regular, usual” only enters the English language around 1840.  (Previously, the word had meant “perpendicular”; the carpenter's square, called a “norm,” provided the root meaning.)  Likewise, the word “norm,” in the modern sense, has only been in use since around 1855, and “normality” and “normalcy” appeared in 1849 and 1857, respectively.  If the lexicographical information is relevant, it is possible to date the coming into consciousness in English of an idea of “the norm” over the period 1840 - 1860”(Davis 10).

 “. . . Herbert Spencer, for example, espoused: that the concept ‘good’ is essentially identical with the concept ‘useful,’ ‘practical,’ so that in the judgments ‘good’ and ‘bad’ mankind has summed up and sanctioned precisely its unforgotten and unforgettable experiences regarding what is useful-practical and what is harmful-impractical.  According to this theory, that which has always proved itself useful is good: therefore it may claim to be ‘valuable in the highest degree,’ ‘valuable in itself.’”(Nietzsche 27).

         This paradigm shift from the concept of the “ideal body,” (a human cannot attain this ideal therefore no human is ideal), to the concept of a standard, normal body has connections with science, medicine and mathematics (scholars generally have not realized these totalizing affects for people with disabilities.)  In particular, the emergence of Statistics led Adolph Quetelet and others to formulate “a generalized notion of the normal as an imperative”(Davis 11).  Through his construct of l’homme moyen physique and l’homme moyen morale, a physical and moral average man, Quetelet creates a range of deviance from this average which positions all people either to the left or right of center and punishes those who find themselves occupying the extreme left or right of the statistical bell curve.  Contributing to an additive effect, Marx also cites Quetelet regarding this concept of an average / normal man in the context of labor theory of value, that within an enforcement of normalcy, societal deviations “in terms of the distribution of wealth for example, must be minimized”(13).  Eugenicists

Eugenics: derived from the Greek word for “well born.”

of the nineteenth century appropriate these concepts to form their philosophy, that through statistical analysis, they believed “a population can be normed”(14).  By using Darwin's theory of evolution as a basis of characterizing people with disabilities as “evolutionary defectives to be surpassed by natural selection”(15), these Eugenicists believed that people with disabilities should be eliminated, thus “norming” the population.
 

"The mass extermination of Jews by gassing -- a method that accounted for some two-thirds of the deaths -- was preceded, from 1939 to 1941, by the elimination of approximately 100,000 men, women, and children, none of them Jewish, all Aryan Germans, who were handicapped, mentally or physically, or both.  Most were murdered with equipment that resembled shower stalls; the victim was lured to his death under the guise of personal hygiene.  Instead of water, the nozzles emitted the lethal Zyklon B gas especially developed for mass murder"(Humphry and Wickett 19).


 3. If it were two hours later, it would be half as long until midnight as it would be if it were an hour later.
                   What time is it now?

                      18:30
                                   20:00
                                                21:00
                                                             22:00
                                                                          23:30

 (Mensa International Internet Interactive Intelligence Quiz http://mensa.org/workout2.html ).

“What is Mensa?  Mensa was founded in England in 1946 by Roland Berrill, a barrister, and Dr Lance Ware, a scientist and lawyer.  They had the idea of forming a society for bright people, the only qualification for membership of which was a high IQ.  The original aims were, as they are today, to create a society that is non-political and free from all racial or religious distinctions.   The society welcomes people from every walk of life whose IQ is in the top 2% of the population, with the objective of enjoying each other's company and participating in a wide range of social and cultural activities”
(http://mensa.org/info.html ).
My I.Q.

when I was four years old
they tried to test my I.Q.
they showed me a picture
of 3 oranges and a pear
they said,
which one is different?
it does not belong
they taught me different is wrong
but when I was 13 years old
I woke up one morning
thighs covered in blood
like a war
like a warning
that I live in a breakable takeable body
an ever-increasingly valuable body
that a woman had come in the night to replace me
deface me
see,
my body is borrowed
yeah, I got it on loan
for the time in between my mom and some maggots
I don't need anyone to hold me
I can hold my own
I got highways for stretchmarks
see where I've grown
I sing sometimes
like my life is at stake
'cause you're only as loud
as the noises you make
I'm learning to laugh as hard
as I can listen
'cause silence
is violence
in women and poor people
if more people were screaming then I could relax
but a good brain ain't diddley
if you don't have the facts
we live in a breakable takeable world
an ever available possible world
and we can make music
like we can make do
genius is in a back beat
backseat to nothing if you're dancing
especially something stupid
like I.Q.
for every lie I unlearn
I learn something new
I sing sometimes for the war that I fight
'cause every tool is a weapon -
if you hold it right.
(Ani DiFranco).

         Sir Francis Galton, Darwin's cousin, began developing the concept of Social Darwinism. This philosophy viewed the disappearance of deficiency as “‘an essential principle of life’”(Liachowitz 71).  Galton reworded statistical terminology into pre-oppressive discourse, changing, “the law of frequency of error” or “error curve” to the “normal distribution curve” and “probable error” to “standard deviation,” as well as changing the focus from ranking to the concept of averaging individuals.  This began an outline of oppression by creating the concept of Normal with its default partner, Abnormal.  These changes affected society as a whole, that through the construction of  “norm” you cannot extricate deviance, which “were regarded in the long run as contributing to the disease of the nation”(Davis 18).  Psychoanalysis, as through Sigmund Freud’s work, also attributed to the conception of normalcy, that neurosis occurs through a problem within normal development.  Even the “science” of phrenology had a hand in the concept of the “norm,” Franz Joseph Gall “sited as proof of his theory the smaller-sized heads of mentally retarded people as compared with those of normal or gifted persons”(Scheerenberger 53).  The outline and construction of the acceptable was born and lives well, affecting the entire populace, inherently implying that few, if any, meet the acceptable standard.

 “Wealthy parents tended to keep their mentally retarded children at home, occasionally providing tutors for their education.  According to Down, many of these children were kept in secret and great effort was made to hide them from public view”(65).
 “I've ‘found’ my voice, then, just where it ought to have been, in the body-warmed breath escaping my lungs and throat.  Forced by the exigencies of physical disease to embrace my self in the flesh, I couldn't write bodiless prose.  The voice is the creature of the body that produces it.  I speak as a crippled woman.  At the same time, in the utterance I redeem both ‘cripple’ and ‘woman’ from the shameful silences by which I have often felt surrounded, contained, set apart; I give myself permission to live openly among others, to reach out for them, stroke them with fingers and sighs.  No body, no voice; no voice, no body.  That's what I know in my bones”(Mairs 60 - 61).


 I am a writer and yes I have a disability.  Living during the nineteenth century would have robbed me of the possibility of a Literary Reputation.  I am also a woman, which generally negates autonomy . . . I do not feel defective, as those theorists would characterize me, though, since my injury was obtained, not congenital, this could have changed their perspective but not very much.  Genetics was a new field and there could have been a belief that my children would be affected by the disability so sterilization would probably have been the first step.  I would have no choice unless I was very high born into wealth and sometimes this did not help.  No one has to sterilize me:  I consciously choose not to bear children.  How did people with disabilities feel being regarded as evolutionary defects?  They probably believed it – or had no choice . . . too many people believe it today.  I would not have been allowed to write and I probably would have been illiterate since there was no widespread concern for educating people with disabilities . . . as the century moved on there was a movement toward education, though it was motivated by teaching the students scripture within an institutional school . . . this research generates fear as these underlying tenets are intertwined with current epistemological thought.  Paternalism is stifling when you are assumed incapable of directing your life . . . quality of life is assumed to be nonexistent for most people with disabilities, especially those pigeon-holed as severely disabled.  We are the only cultural group that has a certain permission to take our own lives since our lives are interpreted as tragedy . . . I strongly believe that any person should have the right to choose death . . . not only the disabled or terminally ill . . . life can be exhausting . . . my father used to say when we are born we should be given a pill, whenever you want to you can swallow the pill but then he speculated that some people would take other people's pills or force the pill down someone's throat . . . death is so dreaded and resisted in this culture:  unless it is a mercy for he or she, though who should decide other than the individual?  We are not beautiful within culture's skewed definition of beauty – in fact the majority of the population are deformed according to this definition, as we are seen, though we are still ourselves.
 

 “Science will eradicate disability”(Davis 21).








         Medicine advanced exponentially during the nineteenth century.  Far reaching discoveries ranging from germ theory to immunization to instrument sterilization techniques to the discovery of the X ray began to change the lives of the those with access to assistance.  A few of the names of these medical forerunners are still remembered:  Ebert, Gaflky, Hansen, Koch, Laveran, Lister, Neisser, Pasteur and Wells to name a few.  Medicine was definitely a work in progress though.
 
 

Would you be my Doctor?

Would you be my Doctor?
The surgeon to wield the knife --
the dagger that will dissect, that could sever.
Oh!  Your mask hides your mouth
but not your eyes . . .
Is that by chance a wedding ring
beneath those aseptic gloves?
We play mental ping pong;
you probe with knowing fingers,
ready to prescribe,
inflicting necessary pain
as the exam persists.
I want to scream out,
“Should I respect you?”
Or should I meekly inquire,
“Could we become friends?”
Share your life with me
on Tuesdays, on Thursdays,
some weeks, it all seems so eternal.
Will you be my Doctor?
Prolonging my ruin
as we tread together through
the symptomatic mine fields
that I call home.
[Constance Laymon.]

 “The nineteenth century Freethought movement of America and Western Europe finally made it  possible for the common citizen to reject blind faith and superstition without the risk of persecution.  The influence of science and technology, together with the challenges to religious orthodoxy by such celebrity freethinkers as Mark Twain and Robert G. Ingersoll brought elements of humanist philosophy even to mainline Christian churches, which became more concerned with this world, less with the next.”
( http://www.secularhumanism.org/intro/what.html ).
 

PARALYSIS.
Meningitis, acute.
  E. B., age 68, a native of Maine, was admitted to the United States Marine Hospital, San Francisco, Cal., September 11, 1893 and died January 9,1897, at 4:15 p.m.
  History. – On admission to the hospital he complained of paralysis of the left side of body and face.  This came on suddenly while at work a few days before.  Received an injury to the skull some years previous, the marks of which still remain.  Condition improved under treatment for a while, but later he steadily grew worse.  Intellection became greatly impaired, and most of the time he was unaccountable for his actions.  He laughed without reason, and a few words would cause him to cry.  He lost control of the sphincters, and had involuntary passages of both urine and feces.  Paralysis of the leg improved, but the arm, at the time of death, had reached the stage of permanent contracture.  Bed sores developed.  He began to talk incessantly, indicating an acute cerebral state.  After a few days this subsided to a condition that was half conscious, and finally to death by gradual loss of vitality(Annual Report of the Supervising Surgeon-General of the Marine-Hospital Service of the United States for the Fiscal Year1897 128).

 Don't make things worse
 As you know, when a person suffers a spinal injury, most cord damage occurs at the time of the accident or in the handling shortly thereafter.  Hasty and improper handling may cause the cord to be crushed, torn, pinched, or severed.  That's why you must immediately immobilize a person with suspected spinal injury, taking care not to move his neck or back(Coping With Neurologic Problems Proficiently 102).
 

DISLOCATION OF CERVICAL VERTEBRAE (FOURTH AND FIFTH) AND MULTIPLE INJURIES.
  M. M.; aged 32 years; native of Austria; admitted to marine ward of German Hospital, Philadelphia, Pa., December 27, 1896; died December 28.
             History. – On day of admission the patient had been caught in the chain of the hoister on a dredging boat and thrown against the deck.  On examination, numerous contusions were seen on the patient's body, on each side of the chest, across the back of the neck, in lumbar region and on both thighs.  A depression was detected above the seventh cervical vertebra, and there was complete paralysis of motion and sensation from the neck down, except the muscles of respiration and slight sensation just below the clavicles and shoulder joints.  The patient could move the head from side to side and downward, but could not bear for anyone else to move his head.  On turning him on his side to examine his spine he vomited and complained of pain in the neck, and could not bear extension.  When lying on his back with his head on a pillow he was perfectly easy.  He had been given a hypodermic of morphia on admission, and his urine had been drawn off by catheter.  Pulse was 88 and strong, respiration about 20, and temperature 35.4 on admission, but gradually arose to 41.4 at the time of his death.  Eyes were bloodshot.  Mind was perfectly clear and he spoke as if he thought his injures slight. Pubes normal.  Death occurred at 1:35 a.m. December 28, from failure of respiration”(Annual Report of the Supervising Surgeon-General of the Marine-Hospital Service of the United States for the Fiscal Year1897 189).


         Many other aspects related to Medicine developed as well, in particular, nursing.  John Stewart Mill's Utilitarian philosophy argued that man had natural capacities and talents which must be allowed to develop, as reformers attempted positive change this was “most important for nursing, better and more humane care of the sick and wounded”(Bullough 83).
 
 

“Q: What's a beautiful girl like you doing racing in a place like this?
A: Winning.
How many times must you be told
there's nowhere that we don't go”
( L7  “Shirley”).

            Early on, nursing was not considered a respectable profession, especially for women of mid to higher classes: “Before nursing could be fully accepted as a worthy occupation, however, the importance of secular nurses had to be recognized”(Bullough 88); women had to become “Sisters” to become nurses.  Mid-century, Florence Nightingale, against her family's wishes, became a nurse and she developed much of the infrastructure during her lifetime as she “also had a hand in the establishment of the visiting or district nurse”(105) and she is individually credited with the concept of the trained nurse.  Without these foundational networks, people with disabilities would not be living independently in their own homes today – those who are not incarcerated.

 “This isn't my home.  The system is just playing house with my life” – resident of a group home
(Mouth 3).

"Cervical (C6) level.  Initially, all functions are impaired.  Only a small number of patients achieve complete independence in all functions, and living alone is not practical even for these patients"(Stolov 71).  [Emphasis added.]


Dependency is fostered.

 “It is difficult for the isolated individual to work himself out of the immaturity which has become almost natural for him.  He has even become fond of it and for the time being is incapable of employing his own intelligence, because he has never been allowed to make the attempt”
Immanuel Kant.  (Friedrich 146).
 “The patient is a 17-year-old girl who fell off the side of a cliff.  She noted no feeling in her legs from the time that she landed.  She initially had an unobtainable blood pressure which responded to the military antishock trousers.  At the time of her arrival in the Emergency Room she had complete cord transection at C6 by examination.  She also had evidence of pulmonary contusion on exam by examination.  She also had evidence of pulmonary contusion on exam and chest x-ray.  She was inubated in the Emergency Room for respiratory insufficiency associated with bradycardia and hypotension.  She was ventilated with ambu bag and 100% oxygen prior to the nasotracheal intubation.  The patient aspirated during the intubation.  Her bradycardia and hypotension responded to fluids, blood, atropine and vasopressin.  Peritoneal tap was performed obtaining a small amount of gross blood so that the lavage was not performed.  The right chest tube was placed obtaining 200 cc of blood.  The left chest tube was placed with no blood or air found.  The patient developed fixed and dilated pupils in the Emergency Room at the time of the respiratory arrest.  On transport to the Emergency Room for an exploratory laparotomy she began to move her arms again and to bite on the oral airway”(Constance Laymon's Medical Records: Dr. Dietz, June 2, 1984).
 “‘Federal authorities should rescind their prohibition of the medical use of marijuana for seriously ill patients and allow physicians to decide which patients to treat. The government should change marijuana's status from that of a Schedule I [prohibited] drug ... to that of a Schedule II drug ... and regulate accordingly.’”
Dr. Jerome Kassirer, editor, New England Journal of Medicine, January 30, 1997.
( http://www.norml.org/news/archives/97-01-30.shtml  ).
 “Clinical and anecdotal evidence also points to the effectiveness of marijuana as a therapeutic agent in the treatment of a variety of spastic conditions such as multiple sclerosis, paraplegia, epilepsy, and quadriplegia.”http://www.norml.org/news/archives/97-01-30.shtml  ).


 Medical care saved my life in 1984, one nine eight and four, after I fell off a cliff.  I was seventeen, ten plus seven years or six two zero five days, 6,205.  Without the breakthroughs that have stacked themselves one upon another and another I would be dead.  M.M. had similar trauma though survived only one day in the hospital in 1896.  His hospitalization description discusses turning his head rather than complete immobility.  This research screams of what I already know – it is a matter of luck that I am alive.  If I lived during the nineteenth century and obtained a Spinal Cord Injury, even if medicine saved me from the initial trauma, my life span would have been quite short as secondary complexities arise often, among infection, pressure issues, urinary and digestive maintenance, to name a few, the medical field keeps its job through caring for those of us who are not Normal, though this is a perfect example that there is no concept of Normal relating to health.  If you label a product as “medical” the price of that product soars.  With advances and technology has come the prolonging of life, not necessarily cure and certainly not immortality.  My life is very different in certain ways, though in others I am a citizen who must follow laws and pay bills, love, cry, eat and amuse myself . . . the Medical Model is extremely paternalistic – by improving upon the notion of deviance, I am completely defined by my body, which is broken, therefore I cannot direct my life.  The model dictates that professionals must care for me – regardless of the fact that every Spinal Cord Injury is different and there is very little specific training for general physicians and many autonomic systems reprogram themselves to operate along their concept of Normal, something that only I can diagnose, in conjunction with a professional, though he or she needs my input for accuracy.  The medical foundations of the nineteenth century include tacit oppression and Otherness.  I write of these differences, these similarities, so I feel less Other though I am not a part – I will always be a deviation but I find that comforting in other ways.  I am not a member of the herd – I am me, bodily deformity creates a completely unique me that no one else in the world appears as or has the nuances of this external me and the internal me likes that.


"One must bear in mind that the growth and maturation of the human organism, from infancy to a productive plateau of four to five decades, followed by gradual functional decline to a helpless, non-productive state is not morbid or indicative of disease any more than is the cycle of nature through the seasons such.  So in quest for health and wellbeing one must not perfectionize to the point of ignoring biologic realities.  The acceptance of genetic and constitutional attributes, both weak and strong, will assist the individual in guiding his health destiny into a reasonable range of wellness, thus preserving and maximizing what is productive, while minimizing the effect of qualities and traits, both physical and mental, which could threaten his ongoing wellbeing"(Fisher 76-77).

"When we meet a professional fortune-teller who promises to use his art to reveal our future, we generallyhave mixed feelings.  On the one hand, the idea appeals to us that someone can look into our future by looking at our hands and relying on a determinism that is inscrutable for us but decipherable by him.  On the other hand, we resist the idea that we are determined, explainable, and predictable beings.  We cherish our free will and want to move beyond determinism.  But at the same time, we want the doctor to cure our diseases by treating us as structurally determined systems.  What does this tell us?  What relation is there between our organic being and our behavior?"(Maturana, Humberto R. and Varela, Francisco J. 122).

 “‘A freak, a freak, my daughter gave birth to a freak,’ my mother's mother yelled, running into the hospital just after I was born.  Hearing this, my father fainted.  The hospital staff thought he had a heart attack.  By the time he revived, my mother, who had gone toxic while giving birth to me, was doing fine”(Fries 4).
  “In making an abstract concept into material that can be snatched up like a valise or pocketed as a possession, the grotesque is constructed through a process of sublimation”
David Mitchell.  (Davis 350).
 “In the nineteenth century the United States was moving from an agrarian, family- and community-based society to one in which formal organizations like schools, factories, businesses, hospitals and government agencies would dominate.  During this time the organizations that would eventually house freak shows developed.  It would be a distortion to state that in 1840 human exhibits changed all at once from unattached attractions to freak shows, for the process was slow and had been under way for half a century.  But 1840 is significant because by that time the transition had progressed significantly and because, close to that date, P.T. Barnum became the proprietor of an organization in New York City, the American Museum, that looms large in the history of the American freak show.  It was this establishment that brought the freak show to prominence as a central part of what would soon constitute the popular amusement industry”(Bogdan 10).
 “You have to trust that the people aren't stupid, and sooner or later they will always do the right thing.
 Either that, or they will always like a good play with lots of stabbing and shooting.”(Michael Moore  http://www.michaelmoore.com ).


“But I want you to remember this, honey,
when it all starts getting you down,
people love their freaks.

Hey, aren't I speaking from experience here?
People love their freaks.”
(Galloway  153).

             “Nineteenth-century Americans, especially during the Victorian period, were enamored of “human curiosities.”(Bogdan 27).  Freak shows were considered entertainment, though were also considered scientific.  Doctors and Philosophers attended these exhibitions to contemplate difference / deviation within the atmosphere of discovery and arguments about / between creationism and evolution.  Scientists would sometimes participate in the show by speaking with visitors, at times discussing a displayed freak (30).  This created an authoritative position for the scientist and legitimized these activities – in a literal sense this de-humanized the freaks themselves.  Through competition, fraudulent freaks were created, furthering the Othering of people with disabilities and / or people who were different.  This exhibitionism of difference seemed to solidify the concept of the “norm” especially as the differences became more and more outrageous and the audience asked for more still.
 Freak shows are often equated with traveling circuses, though began in Museums, such as the American Museum in New York City, the City's premier attraction by 1850.  When it burned down in 1868, P.T. Barnum, the owner, eventually made a transition to the circus.  There were many Dime Museums that displayed freaks for profit from coast to coast and as the commodification of difference grew, there were booking agents, managers, want ads and “freak hunters” etc.  Eventually there was what the industry considered a freak shortage.  Past mid-century, the circus industry mushroomed, bringing this entertainment to rural audiences.  Imagine the perception that the rural individuals had upon seeing the freaks as their rurality was an isolating factor.  These were the main venues for exhibiting “human” oddities.  Exploitation? It is quite complex: this was a profession, some “freaks” viewed it as a way of making money.  The offshoot during the early twentieth century was a rise in Eugenics:  many people were institutionalized and / or segregated as “human differences became medicalized as pathological – as ‘disease’”(63).
 

"The introduction of complex diagnostic technologies in medical research moves authority about the condition of our bodies from us to medical specialists"(Harding 90).
"The difficulties with the medical model, however, are overwhelming.  To begin with, it is simply inapplicable to handicapped children.  The essence of illnesses is that they can be cured, but what distinguishes handicapped children and adults is that they will continue to be as they are -- of a different form from other people.  Most doctors and therapists, far from possessing superior knowledge about handicap, know much less about how to live life in this "special form" than do the handicapped child and his or her family.  Nor can the child be expected to make dedicated and heroic efforts to "get well," since he or she is not "sick" to begin with.  And far from suspending normal activities to concentrate on "cure," the child needs most of all to get on with the business of learning how to lead a full life"
(Keniston. xiv).

"In addition to their physical disabilities, it is well recognized that spinal cord injured patients usually suffer psychosocial disabilities as well.  Patients and their families must make a tremendous adjustment to the sudden changes in their lives.  Patients must come to accept their physical disabilities and learn to function as independently as possible as handicapped persons in a world full of normal people who have very little concept of the architectural and attitudinal barriers that the disabled must face"(Stolov 71 - 72).


 It took me years to like the me that I now am and I do.  I found that I had to extricate myself from the mass hypnotism of valorizing the physical, the exterior, the irrational conception of beauty which has ugly embedded in it.  I am me.  I am Other.  Is the body me?  Partly, but the me that I know is not visual, cannot be dressed in trendy clothing or photographed.  The me that I know is performative, is involved with effective concrete changes, is a mediator, is Other.
 

“‘But I never looked like that!’”  –How do you know?
What is the ‘you’ you might or might not look like?
Where do you find it – by which morphological or expressive
calibration?  Where is your authentic body?
You are the only one who can never see yourself except
as an image; you never see your eyes unless they are
dulled by the gaze they rest upon the mirror or the lens
(I am interested in seeing my eyes only when they look
at you): even and especially for your own body, you are
condemned to the repertoire of its images.”(Barthes.)

When I call someone on the phone, or send someone an email, he or she cannot see the visual:  elaborate tattoos, the curled up, crooked hands with chunky silver rings on each finger, except the right pinkie which was amputated in ‘85, curving back stuffed into the wonderful plastic brace that gave me balance once the muscles no longer functioned, multitude of scars, the round ones on my forehead from the halos that kept me immobile twice, left forearm from the insertion / removal of the metal plate after the severe compound fracture, right forearm underside and right thumb from the tendon transfer that tied a wrist tendon to an arm tendon so I can pick objects up with my hand, the Open Heart Surgery scar from cutting and sawing through the sternum to access the heart which had a hole in between the atria, congenital though characterized as a birth defect, though the curving vine tattoo snakes around the scar obscuring the trunk of scar, surrounded by leaves . . . the back of my neck where Dr. Harris implanted a harvested piece of my hip to fuse the spine June 26th 1984, this is extremely noticeable when putting my hair into a ponytail, deformities, atrophy: hands, arms, belly, back, legs, wheelchair, caked with road soil, dog hair – even my long hair wraps itself around every axle until it becomes a huge mass that must be removed, good old duct tape and black electrical tape doing what they do best, mountain bike tires because I wanted aggressive tread for traction, interested eyes, comfortable smile, non-judgmental body language, though I seem to be constantly in motion, squirming to the left or right, doing pressure relief lifts, leaning forward, leaning back, genuine attention.  The primacy of the visual must be a carry over of some innate Narcissism that could only come alive once mirrors and cameras and imaging capabilities were discovered and mass marketed.  This obsession is quite irrational:  why would you base your self-worth on something transient, changing and extraneous?  I changed literally overnight.  I personally cannot say that I was ever beautiful but that is what I was told for the first seventeen years of my life . . . how much of my beauty rested on my large early protruding breasts, waist so small I could wear a bandanna as a belt and a behind that I dutifully stuffed into jeans so tight that I could not breathe until they began to loosen up . . . my eyes were always intense, especially with dark black eyeliner and mascara to depict the actual length of the lashes, though never ever lipstick . . . lipstick made me feel like a clown . . . plus I often chewed gum trying to blow the biggest bubbles possible . . .  those were high maintenance days . . . now it is just a little goop around the eyes to soften the deep rings because I have not found any magical makeup that will eradicate the circles . . . anyway, at this point in my life I am comfortable with them though they make look ill and people tend to pity the ill and no one should pity me as pity negates my autonomy.  My life is mine:  I cannot and certainly do not feel sorry for myself so use my demeanor as an example and look for something else to feel bad about or do yourself a favor and learn to empathize.  If you are considered beautiful, you must know that you will not always look this way, does the inner you really change when hair becomes gray? No, this is not innate, this is learned.  For the past two hundred years transnational culture has migrated toward an aesthetic of irrational beauty – far beyond an average or standard deviation.  What will the twenty-first century's criteria for Literary Reputation include?  I think it depends on who is controlling the criteria.  Will texts enter into the criteria as primary or will it be the extraneous, the new conception of beauty and / or deviation that is scrutinized?  In less than two weeks the human-created Western construct of time / date will turn into a fresh number, two thousand, two zero zero zero, a new beginning, the onset of a new millennium.  Though, for me, it will be a Saturday.

 “Losing my hair has been much harder than losing my breast.  No one can see underneath my clothes.  But everyone can see my hair.  I never thought my hair was beautiful: it was a simple, brown mop that I combed and washed.  It grew out of my scalp.  It was a part of me.  It was mine”(Rosenblum 94).
 “One woman in the support group told the story of someone whose husband left her from the time of the mastectomy until she got her reconstructed breast.  She explained matter-of-factly that he couldn't bear the sight of his wife.”


“Smile with your eyes so I can see . . .”
(Cheap Trick “Tonight It's You”).

 “I am a woman who needs to be seen.  I need it in a basic way, as in to breathe, to eat.  Or not to be seen, that is the other increasingly attractive option, to give up the lifelong preoccupation of finding myself in others’ eyes, the need to be taken in so that my existence is noted”(Friday 1).
 “We should find perfect existence through imperfect existence.  We should find perfection in imperfection.  For us, complete perfection is not different from imperfection.”
– Shunryu Suzuki.


a smiley moon graphic


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Friedrich, Carl J.  ed.  The Philosophy of Kant: Immanuel Kant's Moral and Political Writings.  New York: The Modern Library, 1993.

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http://mensa.org/info.html

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http://www.michaelmoore.com  (11.23.99  This week's letter To the WEB NATION “The Day I Was To be Tarred and Feathered.”)

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