Here's that research paper I labored on for 3 1/2 months. Watch out for the keyboard
if you fall asleep halfway in.
Alexandra McAnarney
WST 4930
The History of the Gendered Body
AIDS: Constructing Discourse and Disability
“They fancied themselves free and no one will ever be free so long as there are pestilences.”
-Albert Camus
When HIV emerged in the 1980’s, the data of the disease was inextricably linked to certain social groups. The first association made between the disease and sexuality was of homosexuals engaging in “promiscuous sex.” As time and the disease progressed, the biomedical, ethical and social discourse which framed HIV and AIDS shifted to include other groups and problematize sexual behaviors-such as those of African women and prostitutes- without full understanding of sexual desire or human sexuality[i]. By analyzing how sexuality has been conceived as one of the principal cornerstones of human identity and how this concept has been linked to past responses for diseases--particularly venereal diseases--, perhaps we can generate some sort of understanding of how the discourse on HIV and AIDS evolved from its fledgling hypotheses of transmission and socio-political implications in the early 80’s, to the treatable through state regulated care, chronic disability it is recognized as today in the western hemisphere.
To explore how HIV became the cultural phenomenon it is recognized as today, the continual variance of power relations enacted upon people with HIV will be analyzed by charting out a historical timeline of the virus by comparing HIV to responses to venereal plagues of the past. While HIV is not simply limited to sexual contact, for the sake of brevity the social groups commonly accepted as being the main sources of transmission because of their sexual habits will be the central focus.
When people speak of sexuality today, they immediately associate it as part and parcel of their identity. The primary social group with which AIDS is associated with at first impulse-homosexuals-is not a historically linear category. In contrast, ancient Greek traditions of sexuality stressed the one-sex model where “sexual passion in any form implied sexual passion in all forms.” [ii] The practice of old men initiating young boys into the Greek polis through fellatio or other sexual activity was common place in what anthropologist Gil Herdt terms age-structured homosexuality[iii]. However, the term itself is a misnomer since homosexuality would be a word that would most likely mystify a Greek man engaging a young boy. Transmission of disease in antiquity could therefore not be defined by sexual identity if, technically, only one existed. Although there is few evidence of venereal disease in the ancient world, historians have found written descriptions dating to 175 AD that detail symptoms similar to those of syphilis within the Roman Empire. The disease was a ‘secret disease’ found in women and prostitutes, but little else is known of its transmission, only that its treatment was often denied to the patient.[iv]
During the 15th century, the venereal plague to contend with was syphilis, a venereal disease that followed the warring soldiers mapping out European territories. During Charles VIII of France’s campaign in Italy in 1494 he noticed itchy pustules growing on the glands of his men. Eventually the pustules spread to hands and feet. Similar incidences were reported in Zurich and Lucerne in 1496 after the arrival of the French. The disease was attributed to a divine scourge cast by God upon the invading hordes and was treated with mercury to balance out the bodily humours. A connection to the prostitutes following the soldiers on their campaigns had not yet been made during the spread of this novel infection.[v]
Mercury treatments failed to stamp out the disease. Rather than purge the body of toxins, the treatment frequently caused kidney and liver damage and dissolved jaw tissue among other physical side effects. Because humoral treatment had failed, doctors attempted to trace the origins of the disease in an effort to stop contagion. It wasn’t until the 18th century that a link between the sexuality of a specific social group and the disease was made, when Jean Astruc wrote A Treatise on the Venereal Disease in Six Books Containing an Account of the Origins, Propagation and Contagion of the Distemper in 1736. The book traced syphilis to Christopher’s Columbus arrival in the New World, blaming the “promiscuous copulation” of the Hispaniola natives for the propagation of the disease among the sailors who undoubtedly engaged in sexual contact with them. According to Astruc, the sailors then brought the disease back to Europe unknowingly where it was spread by prostitutes who were as equally promiscuous in their copulation. The wives of the men who frequented brothels spread the disease to their children and hindering further reproductive purposes. This officially made women the dangerous sex.[vi] The book initially published in Latin was translated into French, Spanish and English in 1739. 18th century women were assigned the dubious honor of being the first ‘high-risk behavior’ group the legislative and medical establishment had to regulate in order to reign in the spread of a disease that was not endemic to one specific sex, race or age group.
It was during this period of new scientific ‘Enlightenment’ that sexuality was delineated into two role-specific binaries bound to service each other in the interests of populating the newly “democratic” European state. The catabolic male was the aggressive, reasoning being who embodied the public sphere, while the anabolic female was the fragile, passive, homemaker biologically designed for reproduction and not sexual satisfaction.[vii] As men sought outlets from these Victorian paradigms of sexuality, pornography and prostitution boomed. So did the discourse on the knowledge of sexuality as a form of power over it.[viii]It was also during this time that plague was uttered jointly by the state, the church and the medical establishment.[ix]
The Contagious Disease Act of 1864 was a health regulation set forth by the British government to curb an epidemic of syphilis and gonorrhea which assailed the population, primarily prostitutes, their johns and their wives. The act allowed policemen into garrison towns and naval ports to arrest suspected prostitutes who were then subjected to forceful medical examination in hospitals. If they tested possible for any disease, they were sent to lock hospitals for up to three months until they were cured or died. Their principally male clients were not inspected. [x]
With a method that policed the behaviors of one segment of Michel Foucault’s “Other Victorians,” it is not hard to see similar radical regulation with AIDS patients even today who, much like the prostitutes of 1864, merge the private struggle of their condition with the public battle for political and medical enfranchisement. But regulation of such a magnitude frequently begins with only one segment of the population in mind because it is simply easier to police one group of bodies with similar behaviors and characteristics-or that can at least be subject to classification and then policed after being categorized- than an entire array of subjects who exhibit absolutely no similarities.
In 1864, women suspected of prostitution were scapegoated by the British government. This action was not new to Great Britain as prostitutes or ‘common women’ had often been targeted for removal from the public sphere since the early 12th century. But the frequency and zeal of the attacks on these women increased during the 19th century through strict legislation in the name of public health. The aim was to remove the diseased from the streets-the cubicle of the working girl- through regulation, often allowing them to die in Houses of Correction and lock hospitals. Although there was contraception available at the time in the form of condoms, proponents of their use were frequently punished, as was the case with Annie Besant and Charles Bradlaugh who published booklets on contraception in 1877. The discourse of power was bent on the regulation of sexuality for reproductive purposes, regardless of disease. The presence of a condom was far more dangerous than syphilis. The body with syphilis was seen as a metaphor for the moral decay and debauchery of Victorian society.
A parallel can be drawn between the response to disease in Victorian England and AIDS. Prostitution, an economic yet “unnatural” exchange for its lack of biological production was attacked as a reminder of the repercussions for sexual deviance. During this time homosexuality existed on the periphery, regulated by anti-sodomy laws. That “French Vice” known as lesbianism was an implausibility, according to Queen Victoria. But before charting the response to AIDS, a brief overview of sexuality in the west-specifically North America- is necessary to understand how categories such as “high-risk groups” were constructed to be understood as they are today, as a disabled group of individuals post-infection.
As an echo to the regulation of bodies within Victorian societies, the “Silent 50’s” brought about an era of suburban complacency where sexuality was regulated through silence and fear. Homosexuality and Lesbianism was considered a mental illness and therefore a disability for which the American Psychiatric Community prescribed lobotomies. During this decade, however, the first edition of Playboy and Alfred Kinsey’s surveys on male and female sexuality were published, demonstrating that although regulated, sexuality found valves through which it escaped.
The 60’s and the 70’s thrust sexual expression and liberation out of the household and into the public. The tides of feminist, gay, postcolonial, civil rights and other social movements set the stage for individuals to push the envelope of sexual exploration. Sexuality was not so much part of a person’s identity but fertile ground for self and social discovery.
In the 1980’s, the new emerging standards of sexuality were altered. While sexually transmitted infections and diseases were not excluded from the libidinal 60’s and 70’s, deaths caused by either were infrequent. In 1981, a rare lung infection known as Pneumocystis carinii pneumonia or PCP, began to appear with frequency among male populations in California and New York along with higher rates of a rare cancer then known as Karposis Sarcoma. The high incidence of this infection is referred to as the moment the U.S. became aware of AIDS, casting its epidemiological pall over the gay community. The medical establishment considered PCP to be endemic to homosexuals and injecting drug users. Rates among heterosexuals were minimal. Through 1982, the as-of-yet unnamed disease was referred to as the “community acquired immune dysfunction,” the Gay Related Immune Deficiency, GRID, or the more frequented moniker “the gay cancer.”
By taking a leap into modernity, we see how the homosexuality has become part of a person’s identity, how homosexuality and other populations are immediately linked to disease and how the discourse on AIDS evolved. By constructing “epidemiological categories” that linked sexual behavior –particularly homosexual behavior in the West- to the disease, the biomedical and social spheres managed to construct specific ideas of what AIDS is[xi] . In the 50’s, homosexuality was considered a mental illness and by extension of that belief, a disability. If AIDS was to be primarily associated with the homosexual community, it was not a stretch to see how this illness would later be categorized as a disability. A problem soon arose in the mid 1980’s when these classifications no longer proved sufficient to categorize the affected.
In December 1985, medical journalist John Langone published AIDS: The Latest Scientific Facts. In what is comparable to a throwback of the pseudo-sciences of the late 19th and early 20th century, he believed the “vulnerability of the anus” and “fragility of the urethra” generated a propensity towards HIV infection in white, homosexual males. Their sexual organs were feminized beyond Victorian standards of passivity to the point of being crippled appendages of the body. The vagina was considered a rugged organ with tissue that prevented it from tears and consequently from infection. Exceptions that arose from this analysis were prostitutes, whose “Petri-dish” vaginas were incubators of disease or Sub-Saharan African women, whose sexual habits were either a complete mystery or bestially promiscuous. [xii] More often than not, women were viewed as the passive receivers of the disease, as were their children. This association is still made in the present day.
In December 1986, rates of transmission began to increase among heterosexuals. The disease was no longer specific to the sexually, socially and ostensibly racially “deviant.” The Center for Disease Control (CDC) had to adjust its 4-H list, which named Homosexuals, Hemophiliacs, Heroin-addicts and Haitians as primary HIV carriers. It now had to include the Heterosexual category. Now that no social group was exempt from HIV transmission-a fact which solidified the epidemiological language of the virus to create detailed categories based on “high-risk behaviors” frequently associated with race and gender- the next step in the construction of HIV began. The individual body with HIV had to serve the body of the population through immediate regulation. There just had to be an opportunity for this next phase to take place.
In 1994, Randon Bragdon, a dentist in Maine, refused to fill in a cavity for Sydney Abbott, an HIV-positive woman. This was a moment that would delineated the new paradigm with which HIV and AIDS patients would be categorized with. The Americans with Disabilities Act (ADA) was created in 1990 for the protection of disabled people in the workplace against discrimination. This Act requires that an individual show that he or she has an impairment which substantially limits a major life activity or that the individual is regarded as having such an impairment by the person discriminating against them.[xiii] Under these parameters, Abbott claimed that although she was asymptomatic, her HIV status impaired her because it limited her ability to reproduce and she was therefore qualified for ADA protection. The appeal passed in favor of Abbot in federal court and First Circuit Court of Appeals. Brangdon petitioned a review from the U.S. Supreme court asking whether asymptomatic HIV qualified as an ADA compliant disability, if reproduction was a “major life activity,” and if medical professionals who felt their lives were threatened when treating particular patients should be held accountable by the courts.
On June 25, 1998, the Supreme Court ruled 4 to 5 that while people living with HIV were not automatically classified as disabled, HIV is always an impairment due to its continuous, destructive impact on the body. The impairment status was justified as reproductive functions were substantially limited for those living with HIV. However, the case was sent back to the Court of Appeals to determine whether Abbott actually presented a medical threat to Brangdon or not.
This case set the precedent in the public’s understanding of HIV as a disability in the uncommon sense of the word. The inclusion of reproductive functions-or impairment thereof- in the Supreme Court’s landmark judgment served as a catalyst for a new chapter in sexual valuation of the individual, making reproduction a “major life activity” and creating exclusionary attitudes around those living with HIV added to the stigmas they already faced. Although the court stated that HIV impaired “reproduction and the sexual dynamics surrounding it are central to the life process itself," [xiv] the implication that reproduction and sexual dynamics are crippled, if not altogether excluded from the HIV positive sphere, is a notion that has shaped public and legislative understanding.
This ruling has enabled 55-percent of people living with AIDS to rely on Medicaid. Many more await eligibility due to their ADA coverage. Medicaid is a Federal and state funded program that covers three main low income groups: the elderly, parents and their children and the disabled. However, a person must have AIDS to be eligible for Medicaid. Individuals must also meet the income requirements at 133 percent below the poverty level with assets capped at $2000. People living with HIV/AIDS who have applied for Medicaid have been determined to be disabled by the Social Security Administration which states that “an individual must be incapable of engaging in substantial gainful activity by reason of a medically determined physical or mental impairment expected to result in death, or that has lasted or can be expected to last for a continuous period of at least 12 months.” Social Security covers total disability. People with HIV must frequently wait until their status declines to full-blown AIDS in order to be eligible or until they can no longer work.
The problem arises with antiretroviral therapies and other life-prolonging medications that cost between $10,000 to $18,5000 a year. The income bracket for people to apply for Medicaid creates no room for middle-class wage earners with HIV who realistically cannot afford the drugs either. By limiting the eligibility for Medicaid, those who have HIV must stop working, or engaging in the public sphere of capital gain, and retreat into an obscure corner. The state wins in regulating the activities of people with HIV and AIDS and ostensibly punishes them for their illness: a work environment being one of the cornerstones of life Americana around which social, professional and romantic relationships frequently revolve. A disability status places an HIV-positive person at a strategic place in the social pecking order. Although they are not being openly removed from the streets and in turn, the market system, as violently as prostitutes in Victorian England, the continual variance of the discourse now allows for the state to deploy subtle tactics to punish the diseased[xv] as best it can: by symbolically removing them from the capitalist system.
Other programs, such as the Ryan White CARE Act, exist, funding for this program is at a continuous threat of being cut so that all HIV/AIDS patients will be slipped into Medicaid. Similar income brackets are placed on patients for eligibility. The Early Treatment for HIV Act (ETHA) proposed in the 108th Congress provides a small hope in categorizing HIV patients as non-disabled and able to work while simultaneously making them eligible for aid from the government. This would reduce insurance costs from Medicaid significantly.
Throughout the cutthroat struggle for money, sexuality is no longer linked to the “diseased.” Not even considered aberrant, they are excluded from all sexual activity. The body with HIV becomes simply a jot underneath a list of ever changing epidemiological categories. In the beginning, HIV transmission was associated with particular groups of the population who engaged in specific sexual acts: homosexuality and promiscuity. Hemophiliacs, children and women were the inevitable victims of a world that had to atone for its sexual libertinage but that still received the same stigma and the same government-controlled disability status underlining a point that anyone with HIV is not innocent.
The language has evolved to a degree. Homosexuals, while still “high-risk” epidemiological category, rather the term “Men who have Sex with Men” (MSM) a term that has substituted the former from which so much meaning was inferred and underlines the idea that sexuality is not a stagnant thing and could not be a basis for medical classification. Sexuality, then, is slowly coming unhinged from a person’s identity, as even younger generations describe themselves as sexually fluid. However, the medical language that surrounds the new terms is exclusionary and dense and gives entirely too much authority to the medical establishment over patients. Stateside, people living with the virus must cede their autonomy to qualify as disabled to afford treatments and HIV is also referred to as being “feminized” because of its climbing rates in women worldwide which is generating new, dangerous attitudes towards women in Sub-Saharan Africa in terms of how much value should be given to their virginity.
Before all power relations among the affected and non-affected are nullified, perhaps the acknowledgement that we are all affected, that we have all been disabled morally, spiritually, intellectually and physically with the manner HIV/AIDS has been constructed and presented to society we can better absorb the impact HIV has had on our understandings of society. 33 million people have HIV worldwide. Within our own borders, HIV is constantly evolving and changing forms, from being a “silent killer,” to an agent of punishment upon those with aberrant sexual preferences, to a merciless, and indiscriminate plague, to a stretch of fertile ground for the development of biomedical research, discourse, and ethical and moral questions that have changed our everyday dealings with sexuality, to a state-policed chronic illness that is legally considered a disability. If the virus itself is in a constant state of flux, its carriers are no less susceptible to these changes acted upon their bodies which were never stagnant, regardless of their HIV status. The disease should not be the cornerstone of their identity, but by holding them or anyone to one specific sexual identity for the sake of facilitating a medical imperative, real opportunities to quell the virus are passed up.
.
[i] Parker, Richard; Aggleton, Peter Culture,Society and Sexuality Rutledge 1999.p.5
[ii] Parker, Richard; Aggleton, Peter Culture,Society and Sexuality. P.9
[iii] Sterling, Anne Fausto- Sexing the Body: Gender Politics and the Construction of Sexuality Basic Books 2000 p.18
[iv] http://www.angelfire.com/grrl/malibu_selina/papers/prostitutes.html
[v] Crawford, Katherine European Sexualities 1400-1800 Cambridge University Press 2007 p. 130
[vi] Crawford, Katherine European Sexualities 1400-1800 Cambridge University Press 2007 p. 131-135
[vii] Geddes, Patrick The Evolution of Sex 1889
[viii] Foucault, Michel The History of Sexuality Vintage Books Edition 2000 p. 23
[ix] Camus, Albert The Plague Stuart Gilbert 1948 p. 36
[x] Marsh, Jan 19th Century http:/www.vam.ac.uk/collections/periods.styles/
[xi] Parker, Richard; Aggleton, Peter Culture, Society and Sexuality: Treichler, Paula Ch. 20: AIDS, Homophobia and Biomedical Discourse: an epoch of signification p.218
[xii] Parker, Richard; Aggleton, Peter Culture, Society and Sexuality: Treichler, Paula Ch. 20: AIDS, Homophobia and Biomedical Discourse: an epoch of signification p.225
[xiii] Hanssens, Catherine A Brief Overview of Brangdon vs. Abbott. 1998
[xiv] [xiv] Hanssens, Catherine A Brief Overview of Brangdon vs. Abbott. 1998
[xv] Foucault, Michel The History of Sexuality Vintage Books Edition 2000 p. 99
WST 4930
The History of the Gendered Body
AIDS: Constructing Discourse and Disability
“They fancied themselves free and no one will ever be free so long as there are pestilences.”
-Albert Camus
When HIV emerged in the 1980’s, the data of the disease was inextricably linked to certain social groups. The first association made between the disease and sexuality was of homosexuals engaging in “promiscuous sex.” As time and the disease progressed, the biomedical, ethical and social discourse which framed HIV and AIDS shifted to include other groups and problematize sexual behaviors-such as those of African women and prostitutes- without full understanding of sexual desire or human sexuality[i]. By analyzing how sexuality has been conceived as one of the principal cornerstones of human identity and how this concept has been linked to past responses for diseases--particularly venereal diseases--, perhaps we can generate some sort of understanding of how the discourse on HIV and AIDS evolved from its fledgling hypotheses of transmission and socio-political implications in the early 80’s, to the treatable through state regulated care, chronic disability it is recognized as today in the western hemisphere.
To explore how HIV became the cultural phenomenon it is recognized as today, the continual variance of power relations enacted upon people with HIV will be analyzed by charting out a historical timeline of the virus by comparing HIV to responses to venereal plagues of the past. While HIV is not simply limited to sexual contact, for the sake of brevity the social groups commonly accepted as being the main sources of transmission because of their sexual habits will be the central focus.
When people speak of sexuality today, they immediately associate it as part and parcel of their identity. The primary social group with which AIDS is associated with at first impulse-homosexuals-is not a historically linear category. In contrast, ancient Greek traditions of sexuality stressed the one-sex model where “sexual passion in any form implied sexual passion in all forms.” [ii] The practice of old men initiating young boys into the Greek polis through fellatio or other sexual activity was common place in what anthropologist Gil Herdt terms age-structured homosexuality[iii]. However, the term itself is a misnomer since homosexuality would be a word that would most likely mystify a Greek man engaging a young boy. Transmission of disease in antiquity could therefore not be defined by sexual identity if, technically, only one existed. Although there is few evidence of venereal disease in the ancient world, historians have found written descriptions dating to 175 AD that detail symptoms similar to those of syphilis within the Roman Empire. The disease was a ‘secret disease’ found in women and prostitutes, but little else is known of its transmission, only that its treatment was often denied to the patient.[iv]
During the 15th century, the venereal plague to contend with was syphilis, a venereal disease that followed the warring soldiers mapping out European territories. During Charles VIII of France’s campaign in Italy in 1494 he noticed itchy pustules growing on the glands of his men. Eventually the pustules spread to hands and feet. Similar incidences were reported in Zurich and Lucerne in 1496 after the arrival of the French. The disease was attributed to a divine scourge cast by God upon the invading hordes and was treated with mercury to balance out the bodily humours. A connection to the prostitutes following the soldiers on their campaigns had not yet been made during the spread of this novel infection.[v]
Mercury treatments failed to stamp out the disease. Rather than purge the body of toxins, the treatment frequently caused kidney and liver damage and dissolved jaw tissue among other physical side effects. Because humoral treatment had failed, doctors attempted to trace the origins of the disease in an effort to stop contagion. It wasn’t until the 18th century that a link between the sexuality of a specific social group and the disease was made, when Jean Astruc wrote A Treatise on the Venereal Disease in Six Books Containing an Account of the Origins, Propagation and Contagion of the Distemper in 1736. The book traced syphilis to Christopher’s Columbus arrival in the New World, blaming the “promiscuous copulation” of the Hispaniola natives for the propagation of the disease among the sailors who undoubtedly engaged in sexual contact with them. According to Astruc, the sailors then brought the disease back to Europe unknowingly where it was spread by prostitutes who were as equally promiscuous in their copulation. The wives of the men who frequented brothels spread the disease to their children and hindering further reproductive purposes. This officially made women the dangerous sex.[vi] The book initially published in Latin was translated into French, Spanish and English in 1739. 18th century women were assigned the dubious honor of being the first ‘high-risk behavior’ group the legislative and medical establishment had to regulate in order to reign in the spread of a disease that was not endemic to one specific sex, race or age group.
It was during this period of new scientific ‘Enlightenment’ that sexuality was delineated into two role-specific binaries bound to service each other in the interests of populating the newly “democratic” European state. The catabolic male was the aggressive, reasoning being who embodied the public sphere, while the anabolic female was the fragile, passive, homemaker biologically designed for reproduction and not sexual satisfaction.[vii] As men sought outlets from these Victorian paradigms of sexuality, pornography and prostitution boomed. So did the discourse on the knowledge of sexuality as a form of power over it.[viii]It was also during this time that plague was uttered jointly by the state, the church and the medical establishment.[ix]
The Contagious Disease Act of 1864 was a health regulation set forth by the British government to curb an epidemic of syphilis and gonorrhea which assailed the population, primarily prostitutes, their johns and their wives. The act allowed policemen into garrison towns and naval ports to arrest suspected prostitutes who were then subjected to forceful medical examination in hospitals. If they tested possible for any disease, they were sent to lock hospitals for up to three months until they were cured or died. Their principally male clients were not inspected. [x]
With a method that policed the behaviors of one segment of Michel Foucault’s “Other Victorians,” it is not hard to see similar radical regulation with AIDS patients even today who, much like the prostitutes of 1864, merge the private struggle of their condition with the public battle for political and medical enfranchisement. But regulation of such a magnitude frequently begins with only one segment of the population in mind because it is simply easier to police one group of bodies with similar behaviors and characteristics-or that can at least be subject to classification and then policed after being categorized- than an entire array of subjects who exhibit absolutely no similarities.
In 1864, women suspected of prostitution were scapegoated by the British government. This action was not new to Great Britain as prostitutes or ‘common women’ had often been targeted for removal from the public sphere since the early 12th century. But the frequency and zeal of the attacks on these women increased during the 19th century through strict legislation in the name of public health. The aim was to remove the diseased from the streets-the cubicle of the working girl- through regulation, often allowing them to die in Houses of Correction and lock hospitals. Although there was contraception available at the time in the form of condoms, proponents of their use were frequently punished, as was the case with Annie Besant and Charles Bradlaugh who published booklets on contraception in 1877. The discourse of power was bent on the regulation of sexuality for reproductive purposes, regardless of disease. The presence of a condom was far more dangerous than syphilis. The body with syphilis was seen as a metaphor for the moral decay and debauchery of Victorian society.
A parallel can be drawn between the response to disease in Victorian England and AIDS. Prostitution, an economic yet “unnatural” exchange for its lack of biological production was attacked as a reminder of the repercussions for sexual deviance. During this time homosexuality existed on the periphery, regulated by anti-sodomy laws. That “French Vice” known as lesbianism was an implausibility, according to Queen Victoria. But before charting the response to AIDS, a brief overview of sexuality in the west-specifically North America- is necessary to understand how categories such as “high-risk groups” were constructed to be understood as they are today, as a disabled group of individuals post-infection.
As an echo to the regulation of bodies within Victorian societies, the “Silent 50’s” brought about an era of suburban complacency where sexuality was regulated through silence and fear. Homosexuality and Lesbianism was considered a mental illness and therefore a disability for which the American Psychiatric Community prescribed lobotomies. During this decade, however, the first edition of Playboy and Alfred Kinsey’s surveys on male and female sexuality were published, demonstrating that although regulated, sexuality found valves through which it escaped.
The 60’s and the 70’s thrust sexual expression and liberation out of the household and into the public. The tides of feminist, gay, postcolonial, civil rights and other social movements set the stage for individuals to push the envelope of sexual exploration. Sexuality was not so much part of a person’s identity but fertile ground for self and social discovery.
In the 1980’s, the new emerging standards of sexuality were altered. While sexually transmitted infections and diseases were not excluded from the libidinal 60’s and 70’s, deaths caused by either were infrequent. In 1981, a rare lung infection known as Pneumocystis carinii pneumonia or PCP, began to appear with frequency among male populations in California and New York along with higher rates of a rare cancer then known as Karposis Sarcoma. The high incidence of this infection is referred to as the moment the U.S. became aware of AIDS, casting its epidemiological pall over the gay community. The medical establishment considered PCP to be endemic to homosexuals and injecting drug users. Rates among heterosexuals were minimal. Through 1982, the as-of-yet unnamed disease was referred to as the “community acquired immune dysfunction,” the Gay Related Immune Deficiency, GRID, or the more frequented moniker “the gay cancer.”
By taking a leap into modernity, we see how the homosexuality has become part of a person’s identity, how homosexuality and other populations are immediately linked to disease and how the discourse on AIDS evolved. By constructing “epidemiological categories” that linked sexual behavior –particularly homosexual behavior in the West- to the disease, the biomedical and social spheres managed to construct specific ideas of what AIDS is[xi] . In the 50’s, homosexuality was considered a mental illness and by extension of that belief, a disability. If AIDS was to be primarily associated with the homosexual community, it was not a stretch to see how this illness would later be categorized as a disability. A problem soon arose in the mid 1980’s when these classifications no longer proved sufficient to categorize the affected.
In December 1985, medical journalist John Langone published AIDS: The Latest Scientific Facts. In what is comparable to a throwback of the pseudo-sciences of the late 19th and early 20th century, he believed the “vulnerability of the anus” and “fragility of the urethra” generated a propensity towards HIV infection in white, homosexual males. Their sexual organs were feminized beyond Victorian standards of passivity to the point of being crippled appendages of the body. The vagina was considered a rugged organ with tissue that prevented it from tears and consequently from infection. Exceptions that arose from this analysis were prostitutes, whose “Petri-dish” vaginas were incubators of disease or Sub-Saharan African women, whose sexual habits were either a complete mystery or bestially promiscuous. [xii] More often than not, women were viewed as the passive receivers of the disease, as were their children. This association is still made in the present day.
In December 1986, rates of transmission began to increase among heterosexuals. The disease was no longer specific to the sexually, socially and ostensibly racially “deviant.” The Center for Disease Control (CDC) had to adjust its 4-H list, which named Homosexuals, Hemophiliacs, Heroin-addicts and Haitians as primary HIV carriers. It now had to include the Heterosexual category. Now that no social group was exempt from HIV transmission-a fact which solidified the epidemiological language of the virus to create detailed categories based on “high-risk behaviors” frequently associated with race and gender- the next step in the construction of HIV began. The individual body with HIV had to serve the body of the population through immediate regulation. There just had to be an opportunity for this next phase to take place.
In 1994, Randon Bragdon, a dentist in Maine, refused to fill in a cavity for Sydney Abbott, an HIV-positive woman. This was a moment that would delineated the new paradigm with which HIV and AIDS patients would be categorized with. The Americans with Disabilities Act (ADA) was created in 1990 for the protection of disabled people in the workplace against discrimination. This Act requires that an individual show that he or she has an impairment which substantially limits a major life activity or that the individual is regarded as having such an impairment by the person discriminating against them.[xiii] Under these parameters, Abbott claimed that although she was asymptomatic, her HIV status impaired her because it limited her ability to reproduce and she was therefore qualified for ADA protection. The appeal passed in favor of Abbot in federal court and First Circuit Court of Appeals. Brangdon petitioned a review from the U.S. Supreme court asking whether asymptomatic HIV qualified as an ADA compliant disability, if reproduction was a “major life activity,” and if medical professionals who felt their lives were threatened when treating particular patients should be held accountable by the courts.
On June 25, 1998, the Supreme Court ruled 4 to 5 that while people living with HIV were not automatically classified as disabled, HIV is always an impairment due to its continuous, destructive impact on the body. The impairment status was justified as reproductive functions were substantially limited for those living with HIV. However, the case was sent back to the Court of Appeals to determine whether Abbott actually presented a medical threat to Brangdon or not.
This case set the precedent in the public’s understanding of HIV as a disability in the uncommon sense of the word. The inclusion of reproductive functions-or impairment thereof- in the Supreme Court’s landmark judgment served as a catalyst for a new chapter in sexual valuation of the individual, making reproduction a “major life activity” and creating exclusionary attitudes around those living with HIV added to the stigmas they already faced. Although the court stated that HIV impaired “reproduction and the sexual dynamics surrounding it are central to the life process itself," [xiv] the implication that reproduction and sexual dynamics are crippled, if not altogether excluded from the HIV positive sphere, is a notion that has shaped public and legislative understanding.
This ruling has enabled 55-percent of people living with AIDS to rely on Medicaid. Many more await eligibility due to their ADA coverage. Medicaid is a Federal and state funded program that covers three main low income groups: the elderly, parents and their children and the disabled. However, a person must have AIDS to be eligible for Medicaid. Individuals must also meet the income requirements at 133 percent below the poverty level with assets capped at $2000. People living with HIV/AIDS who have applied for Medicaid have been determined to be disabled by the Social Security Administration which states that “an individual must be incapable of engaging in substantial gainful activity by reason of a medically determined physical or mental impairment expected to result in death, or that has lasted or can be expected to last for a continuous period of at least 12 months.” Social Security covers total disability. People with HIV must frequently wait until their status declines to full-blown AIDS in order to be eligible or until they can no longer work.
The problem arises with antiretroviral therapies and other life-prolonging medications that cost between $10,000 to $18,5000 a year. The income bracket for people to apply for Medicaid creates no room for middle-class wage earners with HIV who realistically cannot afford the drugs either. By limiting the eligibility for Medicaid, those who have HIV must stop working, or engaging in the public sphere of capital gain, and retreat into an obscure corner. The state wins in regulating the activities of people with HIV and AIDS and ostensibly punishes them for their illness: a work environment being one of the cornerstones of life Americana around which social, professional and romantic relationships frequently revolve. A disability status places an HIV-positive person at a strategic place in the social pecking order. Although they are not being openly removed from the streets and in turn, the market system, as violently as prostitutes in Victorian England, the continual variance of the discourse now allows for the state to deploy subtle tactics to punish the diseased[xv] as best it can: by symbolically removing them from the capitalist system.
Other programs, such as the Ryan White CARE Act, exist, funding for this program is at a continuous threat of being cut so that all HIV/AIDS patients will be slipped into Medicaid. Similar income brackets are placed on patients for eligibility. The Early Treatment for HIV Act (ETHA) proposed in the 108th Congress provides a small hope in categorizing HIV patients as non-disabled and able to work while simultaneously making them eligible for aid from the government. This would reduce insurance costs from Medicaid significantly.
Throughout the cutthroat struggle for money, sexuality is no longer linked to the “diseased.” Not even considered aberrant, they are excluded from all sexual activity. The body with HIV becomes simply a jot underneath a list of ever changing epidemiological categories. In the beginning, HIV transmission was associated with particular groups of the population who engaged in specific sexual acts: homosexuality and promiscuity. Hemophiliacs, children and women were the inevitable victims of a world that had to atone for its sexual libertinage but that still received the same stigma and the same government-controlled disability status underlining a point that anyone with HIV is not innocent.
The language has evolved to a degree. Homosexuals, while still “high-risk” epidemiological category, rather the term “Men who have Sex with Men” (MSM) a term that has substituted the former from which so much meaning was inferred and underlines the idea that sexuality is not a stagnant thing and could not be a basis for medical classification. Sexuality, then, is slowly coming unhinged from a person’s identity, as even younger generations describe themselves as sexually fluid. However, the medical language that surrounds the new terms is exclusionary and dense and gives entirely too much authority to the medical establishment over patients. Stateside, people living with the virus must cede their autonomy to qualify as disabled to afford treatments and HIV is also referred to as being “feminized” because of its climbing rates in women worldwide which is generating new, dangerous attitudes towards women in Sub-Saharan Africa in terms of how much value should be given to their virginity.
Before all power relations among the affected and non-affected are nullified, perhaps the acknowledgement that we are all affected, that we have all been disabled morally, spiritually, intellectually and physically with the manner HIV/AIDS has been constructed and presented to society we can better absorb the impact HIV has had on our understandings of society. 33 million people have HIV worldwide. Within our own borders, HIV is constantly evolving and changing forms, from being a “silent killer,” to an agent of punishment upon those with aberrant sexual preferences, to a merciless, and indiscriminate plague, to a stretch of fertile ground for the development of biomedical research, discourse, and ethical and moral questions that have changed our everyday dealings with sexuality, to a state-policed chronic illness that is legally considered a disability. If the virus itself is in a constant state of flux, its carriers are no less susceptible to these changes acted upon their bodies which were never stagnant, regardless of their HIV status. The disease should not be the cornerstone of their identity, but by holding them or anyone to one specific sexual identity for the sake of facilitating a medical imperative, real opportunities to quell the virus are passed up.
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[i] Parker, Richard; Aggleton, Peter Culture,Society and Sexuality Rutledge 1999.p.5
[ii] Parker, Richard; Aggleton, Peter Culture,Society and Sexuality. P.9
[iii] Sterling, Anne Fausto- Sexing the Body: Gender Politics and the Construction of Sexuality Basic Books 2000 p.18
[iv] http://www.angelfire.com/grrl/malibu_selina/papers/prostitutes.html
[v] Crawford, Katherine European Sexualities 1400-1800 Cambridge University Press 2007 p. 130
[vi] Crawford, Katherine European Sexualities 1400-1800 Cambridge University Press 2007 p. 131-135
[vii] Geddes, Patrick The Evolution of Sex 1889
[viii] Foucault, Michel The History of Sexuality Vintage Books Edition 2000 p. 23
[ix] Camus, Albert The Plague Stuart Gilbert 1948 p. 36
[x] Marsh, Jan 19th Century http:/www.vam.ac.uk/collections/periods.styles/
[xi] Parker, Richard; Aggleton, Peter Culture, Society and Sexuality: Treichler, Paula Ch. 20: AIDS, Homophobia and Biomedical Discourse: an epoch of signification p.218
[xii] Parker, Richard; Aggleton, Peter Culture, Society and Sexuality: Treichler, Paula Ch. 20: AIDS, Homophobia and Biomedical Discourse: an epoch of signification p.225
[xiii] Hanssens, Catherine A Brief Overview of Brangdon vs. Abbott. 1998
[xiv] [xiv] Hanssens, Catherine A Brief Overview of Brangdon vs. Abbott. 1998
[xv] Foucault, Michel The History of Sexuality Vintage Books Edition 2000 p. 99
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