Student Journal

The Human Genome, Cleve Jones, the NAMES Project AIDS Memorial Quilt, & the 1980s

The suffering of another I can only envision through the mimesis of my own.

Tony Dent[1]

AIDS, human genome research, and shifting cultural notions of the family (influenced in part by new medical technologies) are three distinct elements that became part of the sociocultural fabric of the 1980s.  More than two decades later, this time period is remembered as a patchwork of changing political, social, and cultural views.  Particularly in the U. S. urban centers, what constituted a family (how a family and gender roles were structured, as well as how caregiving should be implemented) became a sequence of diversified opinions.  This decade was also marked by the beginning of the tragic pandemic that became known as the acquired immunodeficiency syndrome (AIDS), caused by the human immunodeficiency virus (HIV).  This was a time of overwhelming trepidation, misunderstanding, and loss.  As the scientific community scrambled to quell public fears, new advances in the building blocks of life, Deoxyribonucleic acid (DNA) began to be unraveled.  With these discoveries, scientists promised not only a new understanding of what it meant to be human, but also foresaw cures for diseases, and longevity of life.

         In this paper, the argument is made that the events of the 1980s altered the binary systems of: the self/Other, male/female, and subject/object.  These binaries were questioned through a rewriting and mapping of the body that shifted the cultural landscape.  It will be demonstrated how the body was coded and mapped in various ways during the decade, through the HIV/AIDS pandemic, human genome research, and cultural concepts of family structure, gender roles, and caregiving.  While these various threads of rewriting and mapping the body arose in many arenas, one particularly rich site for exploring them is found in the gay rights activist, Cleve Jones’, NAMES Project AIDS Memorial Quilt,[2]started in 1987.

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         DNA was first identified in the late 1980s by Swiss chemist Friedrich Miescher, and “the first gene to be mapped to a specific chromosome in man - indeed, in any mammal – was that for color blindness, deduced to be on the X chromosome by E.B. Wilson at Columbia University in 1911.”[3]  Although these were both monumental findings, it was American biologist James Watson and English physicist Francis Crick’s discovery that revolutionized human understanding of all animals and plants.  In 1953, Watson and Crick concluded that the DNA molecule exists in the form of a three-dimensional structure, the double helix.  From this they construed how the coding of DNA could replicate and instruct, from the “mother molecule of life,”[4]as it came to be known.  With their discovery, a picture of a central dogma of the flow of information from DNA to RNA to protein came into focus.  Twenty years later, the first recombinant DNA experiments in bacteria were in progress, shifting the key area of interest within the scientific community from biochemistry to molecular biology.  By the 1980s, this new field of science had become known as molecular genetics, and a new understanding of Homo sapiens began in earnest with the study of the human genome.  In 1990, eighteen countries joined together to sequence and map the entire human genome in what became known as the Human Genome Project (HGP).

         Throughout the twentieth century, many discoveries linked to the human genome precipitated a new understanding of life, as well as altered the way humans perceived themselves and the world around them.  In essence, as the comprehension of the human genome expanded, the concept of the human body was rewritten by mapping its genetic code.  Multiple innovations were the catalyst for this new knowledge.  The rediscovery of Mendelian inheritance at the beginning of the century was a crucial step.  Other important advances were Barbara McClintock’s concept of transposition, Alfred Hershy’s discovery of replication of viruses and their genetic structure, and Fred Sanger’s sequence of DNA.  These are just some of the advancements in the field of genetics that lay the groundwork for the scientific jump form Mendel’s early plant hybridization experiments to experiments involving human DNA and the onset of the HGP.  Concurrently, the cartography of how the surface of the body looks became viewed as the effect of one’s genetic code, rather than the surface of the body being the cause of one’s genetics.  An example of this is the studies of parental genetic contribution to a children’s height. In one such study, published in 1989, both parental heights and child’s height at the age of one were examined.[5]  In this study and other related studies, a direct correlation between the height of the parents and the height of their children has been found. 

With new digital photography and further advances in the understanding of the relation of one’s DNA to the appearance of the surface the body, plastic surgeon, David Teplica’s study of the body shape of monozygotic twins becomes relevant.  He suggested that, “diet and exercise appear to be able to temporarily alter size, but it seems that only surgery, disease, or trauma can permanently alter shape[6]of the body.  As these new concepts of the body were developing through the continuous mapping of the human genome, the devastating effects of HIV/AIDS was also transforming the immune systems of individuals with the disease.  The visual effects of the disease also affected how the body was perceived, for example, HIV-related lipodystrophy caused a sunken face, exposed ribs, swollen belly, and bony arms and legs.  These side effects marked the afflicted and often led to prejudice. 

As the cartography of the surface of the body was newly understood by genetic research, and AIDS altered the appearance of the body, the perception of the body was also changed by how society defined the performativity of gender roles.  This change in perception of gender roles was due in a large part to the alignment of much of feminist theory with gay and lesbian theory.  While much of feminist theory from the beginning of the 1980s was grounded in essentialism, the argument of performativity was being developed throughout the decade and into the 1990s by writers Eve Kosofsky Sedgwick, Judith Butler, and others.  This concept helped lead to the development of queer theory; a term coined in 1990 by the writer Teresa de Lauretis.[7]  One of the goals of this movement was to argue that labels such as lesbian or feminist should not be used because they do not take into consideration race or culture.  They argued that there was no essentialist body with which all women could identify because what a subject does or the role she performs is different than what a subject is, the self.  Furthermore, the biological classifications of male and female identities were challenged with the use of genetic abnormalities such as Klinefelter and Turner syndromes.  In Klinefelter syndrome, males have an extra X chromosome, thus their chromosomal makeup is XXY instead of XY; this sometimes leads to secondary female characteristics, such as breasts.  In Turner syndrome, females have only one X chromosome instead of two.  Among other symptoms, these individuals lack secondary female sexual characteristics.  Thus, in these instances, proving that the cartography of the surface of the body is directly linked to one’s genetic code and the male/female binary cannot always be simply defined. 

As queer theory became more prevalent in academia, and gay and lesbian activists fought for equality, how they were defined by society was modified.  By the early 1990s, the more inclusive term LGBT (lesbian, gay, bisexual, and transgender) began to be used.  The introduction of LGBT culminated with changing attitudes toward the human body during the 1980s.  These changes were derived from, not only queer theory and LGBT activism, but also a new understanding in the human genome and the spread of HIV/AIDS.  One way that AIDS directly altered how the body was defined was through a growing understanding of how the virus attacked the immune system, and how the surface of the body was subsequently altered.  For example, many people who have AIDS often develop Kaposi’s Sarcoma (KS), the most common AIDS-related cancer.  Individuals who develop KS often have pink, red or purple lesions on their skin, demonstrating how AIDS can transform the immune system and remap the structure of the body from the inside out.  During the 1980s, in reaction to AIDS, human genome research and the biomedical industry became key elements in how the body and the self were transformed.  As feminist author Donna Haraway suggests, the body and self became defined by the construction of the biomedical technical language of the postmodern scientific culture in the U. S.[8]  This, she argues, cannot be separated from American culture of 1980s, and it is this overlapping of science, disease, and culture that redefined the body and the self.  Furthermore, it is this treatment of the individuals by the biomedical discourse in relation to AIDS that Haraway credits for the initial developed of much of the queer theory of the decade.[9]  Both the AIDS body and the gay or lesbian body became interconnected bodies by an understanding of the identity of the self as an ambivalent site within the culture of the U. S.  Within the dominant sociocultural setting of the 1980s, this often placed the healthy straight body in the position of the self and the gay, lesbian or AIDS afflicted body in the position of the Other.

         The sociocultural perception of the gay, lesbian, and AIDS bodies morphed over the decade as more AIDS cases were identified, and a greater understanding of the disease was attained.  At the beginning of the pandemic, the scientific community was unaware of the magnitude of the situation.  The first finding of a health problem was published in the March 1981 issue of The Lancet.  Later, in June, the CDC published an article in the Morbidity and Mortality Weekly Reportdocumenting five men in Los Angeles who had developed Pneumocystis carinii pneumonia (PCP) without identifiable cause.[10]  This report marked the beginning of the general awareness of AIDS in the U. S.       

         San Francisco and New York City became the epicenters for the crisis, as the two coastal cities shared several attributes: both had growing openly gay communities, and both were transportation hubs, with ships docking and planes landing form every corner of the globe.  As early as 1981, some in the medical community suspected AIDS to be sexual transmitted, but without data to substantiate their hypothesis, this theory was not, at that time, made public for fear of public panic and the potential of igniting an antigay backlash.[11]  The lack of coverage by the media was also the result, initially, of widespread belief that AIDS was an illness only contracted by gay individuals.  It was initially referred to by the media as a “gay disease, gay cancer, or gay plague, and some health care providers and researchers informally labeled it ‘gay-related immune deficiency’ (GRID).”[12]  This caused an increase in homophobia, along with a lack of public empathy for those afflicted with the disease.  However, by the end of 1981, PCP was being reported in intravenous drug users,[13]and in December, 1982, evidence that AIDS was caused by an infectious agent was proven with the death of a twenty-month old child who died from infections related to AIDS.[14]  The spread of AIDS into the non-gay community led to public panic and many to blaming the gay community, wrongly claiming that they introduced the disease into the human population.  

         By this time, the gay activist Cleve Jones was forming committees to educate the public.  In September of 1981, he helped organize a community forum on AIDS in San Francisco that was covered by the local papers.[15]  Early forms of prejudice against gays and those with signs of AIDS were clearly witnessed.  For example, some people faced discrimination by losing his or her apartments if the landlord found out he/she had AIDS.[16]  As the disease spread, the unfair scrutiny of the gay community led to heightened gay rights activism.  Jones became so enraged that he turned a memorial march for Harvey Milk into an activist march on November 27, 1985.[17][18]  It was during this march that Jones conceived of the idea for the AIDS Quilt.  Inspired by Christo’s Running Fence in Sonoma County and Judy Chicago’s Dinner Party,[19]Jones imagined a quilt that would memorialize those who had died of AIDS.  From the beginning, he pictured it spread in front of the White House, and hoped it would change public opinion about HIV/AIDS, as well as about gays and lesbians, and that it would help to rewrite the culture of the U. S. as a more open and accepting society.  Jones explains that “HIV was seen as the product of aggressive gay male sexuality, and it seemed that the homey image and familial associations of a warm quilt would counter that.”[20]  In 1987 he started the AIDS Quilt with his friend Joseph Durant. 

         The activists involved in the NAMES Project, the organization that made the AIDS Quilt, attempted to inform and educate the public about the disease.  Activist groups began to form in large cities.  ACT UP, one of the better known groups, grew out of the 1987 San Francisco AIDS Action Pledge, and advocated for a commitment to end AIDS.  While AIDS was often the main focus of the group, ACT UP did not always center its actions around AIDS; rather, as writer Josh Gamson notes, they incorporated AIDS activism into “the project of ‘recreating a movement for gay and lesbian liberation’.”[21]  In the 1980s, ACT UP members deliberately crossed social boundaries, thrusting their lifestyles into public places by, again according to Gamson, “throwing condoms, necking in public places, and speaking explicitly and positively about anal sex.”[22]  As the gay and lesbian community became more open, their various views about the body, as well as the sociocultural delineation of the male/female binary, helped to rewrite the concept of the body.  In light of this, the perception of gender roles, family structure, caregiving and even one’s genetic code, with the concept of a “gay” gene, came into question.  This facilitated a rewriting of how the human body is perceived, and how the self reacts to the Other.

         In the early 1980s, when it was still publicly unknown how HIV was transmitted, growing fear of the disease led to prejudice and ostracism of those with HIV/AIDS, as well as with their families, and caregivers.  This prejudice was far reaching and, according to Jones, even included anti-HIV prejudice within the gay community.[23]  This lack of empathy and fear of bodily contact led to the sociocultural repugnance of an abject state.  This is not unlike feminist philosopher Julia Kristeva’s theories of the abject.  The abjection further inscribed sociocultural attitudes toward the body, and the repudiation of the abject by the heterosexual community further denied the LGBT community a state of being within the sociocultural grounds of the 1980s.  The denial of inclusion into the mainstream cultural and social community of America was not exclusively directed at the LGBT community.  The fear of the abject was directed toward anyone who showed signs of the disease.  This was epitomized by the case of Ryan White, a hemophiliac who, in 1985, at the age of 13, became a symbol of the intolerance that was inflicted upon AIDS victims, as the school he attended banned him from classes.[24]  Later, amongst an onslaught of media coverage, a court ordered his reinstatement.[25]  White went on to become a national celebrity and spokesperson for HIV/AIDS research and public education.  This young pre-sexual spokesperson did much to educate Americas, but of course he did not completely allay the anti-gay movement that blamed gay men for starting the pandemic, nor the public panic surrounding HIV/AIDS.

         To raise awareness of the devastation of the disease, educate the pubic, and deal with the loss of their own friends, Jones and Durant started the AIDS Quilt in 1987.  They began with a list of forty men they know who had died of AIDS, and made a three foot by six foot fabric panel for each.  Jones explains that the size was to represent “the space that would be taken up by each of those bodies, about the dimensions of a grave.”[26]  As more people made panels, each panel represented not only a body, but the perception of how that person was viewed.  Some panels were loving tributes, while others were made without the person’s name for fear of anti-AIDS sentiments towards the dead person and his/her family. As the AIDS Quilt grew, it mapped the various emotions, such as fear and loss, in a spectrum of hues, and displayed how the body and the self were transformed by the new understanding of the human genome and the biomedical industry.  The body was too often defined by its amount or lack of antibodies, and the AIDS Quilt brought the reality of the human self back to the thousands of bodies touched by the disease.  These panels, along with the thousands of others that make up the AIDS Quilt today, were sewn together into twelve-by-twelve-foot squares.  Four of them were then attached together with grommets and cable ties to form a square that was twenty-four feet by twenty-four feet.  These were then folded in what became known as the lotus fold, a method of folding and unfolding the corners together, which was designed by fellow gay rights activist and AIDS Quilt maker, Jack Caster.  The concept of the presentation of the AIDS Quilt was to position a twenty-four foot square panel that was already in the lotus fold into the center of a grid of walkways.  Eight people, all dressed in white, representing the nurses and caregivers that tended to so many of the dead, would then unfold each section, as the names of the dead were read one by one.  This process was streamlined as the years passed, the size of the AIDS Quilt, and viewing of it grew exponentially, making for a moving and beautiful display of folk art.  As the project progressed, the HIV/AIDS pandemic spread.  The AIDS Quilt not only memorialized the dead and dying, but also mapped the progression and awareness of HIV/AIDS, as well as documented and allayed public panic or social changes towards those touched by the disease and the changing attitude towards the LGBT community.

         Slowly, public opinion began to sway.  By 1988, several events were unfolding that helped to educate and shift public opinion.  Surgeon General C. Everett Koop authorized a mass-mailing of an information brochure on HIV/AIDS to educate the public, and to turn the focus of the conversation from moral politics to concerns of medical care, economic position, and civil rights of AIDS sufferers.  Safe sex education began to emphasize sexual practices over sexual identities at the same time queer theorists challenged gender identities.  Additionally, Jones and the founding director of the World Health Organization’s Global Program on AIDS, Dr. Jonathan Mann, decided to use the AIDS Quilt as a symbol for the first World AIDS Day.  The collaboration moved AIDS activism to a global scale, and marked what has become know as the International AIDS Quilt Movement.  Soon after, in 1990, Congress passed The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, and Common Threads: Stories form the Quilt, directed by Rob Epstein, won the Oscar for Best Documentary.

         It could be argued that the changing attitude in the 1980s and 1990s towards the LGBT community began in the 1970s, as Jones noted.  He claimed that, “throughout the late ‘70s it became more and more obvious that gays and lesbians around the country were asserting and claiming rights and freedoms long denied.”[27]  But those freedoms were not easily gained; gay men were often depicted through a hateful antigay propaganda, as seen in the 1979 CBS special Gay Power, Gay Politics.[28]  Even though the gay community had started to become a more open society in the late 1970s, Jones feared the community would be forced back into the closets as a result of AIDS.  However, he claimed:

The opposite happened.  As the virus spread among us and our friends sickened and died, gay people throughout the world dedicated their lives to the fight against AIDS.  For us, the struggle against the virus was inseparable from the struggle for justice.  In the face of appalling loss, our community united and, with the support of large numbers of heterosexual allies, launched the global campaign to stop HIV.  In the process of organizing to fight AIDS, we discovered skills, strengths, and resources we never knew we possessed.[29]      

Through Jones and other activist’s actions to educate the public about the gay and lesbian community and about HIV/AIDS, they were eventually able to begin to pacify the seemingly insurmountable oppositions to the gay and lesbian lifestyle.  TheNAMES Project stitched the struggles of the gay activist movement and the fight against AIDS together, mapping the defeats and triumphs into the various hues that compose the AIDS Quilt.  Over time, the NAMES Project and AIDS Quilt have become symbols that have been used to advocate for understanding and acceptance for the LGBT community, and the reception towards both the NAMES Project and AIDS Quilt have helped to change public opinion about those afflicted with HIV/AIDS and the LGBT community.

         The first installation in Washington D.C. was on October 11th 1987, ten years after Milk first called for a National March for Lesbian and Gay Rights.  At that time, the AIDS Quilt consisted of 1,920 panels from around the county.  Jones explains the response was “overwhelming, something I had not imagined or planned for … every single person who saw the Quilt with their own eyes became an evangelist … turning the tide of grassroots support …  We were on the front page of newspapers around the world, even as far away as New Delhi.”[30]  The following year, the AIDS Quilt had quadrupled in size from 1,920 panels to 8,288.  It was, as Jones explained, “a kaleidoscopic range of emotions on a new epic scale.”[31] In 1996, it consisted of seventy-two thousand names of those who had succumbed to AIDS.  Forty-two thousand panels represented these individuals.  Today, the AIDS Quilt is considered the world’s largest community arts project with more than forty-five thousand individual quilt panels. 

         The HIV/AIDS pandemic and a movement of gay rights activism were both mapped through the NAMES Project.  And both contributed to making the lifestyles of the LBGT community more publicly known.  In turn, the widening understanding of sexuality contributed to the societal re-defining of gender roles that was also occurring.  This expansion of gender roles exacerbated the argument that one’s anatomical sex does not determine the gender role(s) one acts out in a given society.  So profound in its range was this argument that by 1990, the feminist and queer theorist Judith Butler wrote “any theory of the culturally constructed body … ought to question ‘the body’ as a construct of suspect generality.”[32] Butler is one of the most celebrated of the various theorists and activists who proposes the separation of sex and gender, and who argue that the contours of the body, or the anatomical sex, are not the appropriate grounds for inscribing gender. Specifically, she argues that although an individual is most frequently born with either the sex chromosome XX (female) or XY (male), which genetically determines his/her biological sex, how that person acts or performs the role of the male or female is what determines gender.  And gender, she contends, is based on sociocultural factors, not innate genetic sex attributes.

         Butler’s argument was partly based on the feminist writer Simone de Beauvoir’s concept of becoming a gendered subject that challenged the concept that women constituted a lack from which men established their identities.  Butler, however, argues that gender is not only in a perpetual Hegelian dialectic of a dichotomy between the male/female genders. Her ideas are more open-ended allowing for gender to be associated with being straight, gay, lesbian, bisexual, or transgender.  For Butler, gender is an act of a cultural performance that is “a fantasy instituted and inscribed on the surface of the bodies.”[33]  Genders are “neither true nor false, but are only produced as the truth effects of a discourse of primary and stable identity.”[34]  Hence, gender roles are constructs, specific to a give society, and acted out in a ritual performance that is repeated on a daily basis.  According to Butler, “this repetitions is at once a reenactment and reexperiencing of a set of meanings already socially established; and it is the mundane and ritualized form of their legitimation.”[35]  Therefore, it is the performativity of the gender role that reinscribes the social meaning of that gender role within a given sociocultural setting.  The performance of rituals maintains the gender role within a binary frame.  In Western cultures, where that binary frame has long been held, this understanding of gender radically unsettled prevailing ideas. 

Butler claims if gender is performative “there would be no true or false, real or distorted acts of gender, and the postulation of a true gender identity would be revealed as a regulatory fiction.”[36]  It is then reasonable to think that gender roles, or how one identifies one’s gender identity, are tenuously constituted in a spatial-temporal moment of a given sociocultural setting, and are not fixed.  Instead, gender roles, and even the binary frame in which they are performed, are in flux as cultural performances of gender roles change over time.  As philosopher Michel Foucault argues, “the body is the inscribed surface of events.”[37]  Culture and its value are inscribed on to the body through a given moment in history, which forces the body to use cultural language to describe gender, along with race, ethnicity, beauty, etc…  Today, the LGBT community is more prevalent in the media, is conducting a more open lifestyle than ever before, and is reinscribing the boundaries of the body.  This is analogous to the reinscribing or mapping of the body that was perpetuated by HIV/AIDS, along with studying the human genome, as both the inside and outside of the body were demarcated anew by the cultural performativity of gender roles.

         As figures like Butler might suggest, many feminist and queer theorist academics supported one another in the 1980s. In part, their alliance was strategic; both groups felt they needed a separate space outside the dominant patriarchal discourse.  Many hoped to map a new, separate course for both these movements, one in which the body could be rewritten without the use of the patriarchal discourse.  At the same time that Butler was publishing and gaining renown, Jones called for, not a separate space outside the dominant patriarchal discourse, but inclusion into the patriarchal discourse.  He wanted the recognition of the LGBT community, and for society to allow people to live openly irrespective of their sexual orientation.  Like Butler’s depiction of the body, this meant that Jones and the LGBT community needed to challenge the bodily boundaries and the assumed male position within patriarchy.  Jones explains that this desire often turned into violent protests, probably the most poignant being the White Night riots surrounding Milk’s assassination and the trial of his assassin Dan White.  The riots were in response to the prejudice against Milk’s sexual orientation and activist lifestyle, exacerbated by White being only convicted of voluntary manslaughter, the lightest possible conviction.  This along with White’s absurd defense, that he gorged himself on Twinkies and the sugar rush was what had triggered his rampage, enraged Milk’s supporters.[38]  What Milk’s supporters wanted was justice, acceptance, and an open lifestyle without fear of retaliation from the dominant patriarchal discourse.  It was Milk’s death that became the catalyst for much of Jones’ activism, and was in large part the impetus for the AIDS Quilt.  After Milk’s death, Jones began organizing a candlelight march to mark the day he died.  Seven years into this ritual, in 1985, Jones turned this march into a memorial for Milk and those who had died of AIDS.  He asked the marchers to write the name of a friend on poster board who had been killed by AIDS.  The march culminated with the poster-boards being taped to the federal building in the Castro in San Francisco.  It was here Jones claims he thought of the AIDS Quilt.[39] 

The AIDS Quilt and the large scale ceremonial actions of opening, folding, and calling out of names of the dead became a performance in which there was an attempt to give the LGBT community a voice.  The placement of the AIDS Quilt in front of the White House, the most nationally recognized symbol of American patriarchal society, further demonstrates the challenge by Jones and his supporters to be recognized and accepted.  The demonstration and performance of the opening and closing, or the showing of the inside and outside of the AIDS Quilt, was an essential part of the deconstruction of the preconceived ideas about HIV/AIDS and the LBGT community.  The actions surrounding the AIDS Quilt helped to rewrite how gender is performed within Western society by placing the LGBT community into public debate.

The concept of gender performativity, that Butler suggests, demonstrated in the AIDS Quilt, can be applied to a number of situations, each positioning the participants in various relations to the dominant patriarchal discourse.  Each of these positions also locates the participants in the phenomenological world in which the body inhabits.  The actions of gender performativity then could orient the self within the spatial-temporal and the socioculture world.  This orientation could be seen as the phenomenological experience that the self engages in as the self performs a gender role.  As the queer theorist Sara Ahmed writes, “if orientation is a matter of how we inhabit spaces, then sexual orientation might also be a matter or residence, of how we inhabit spaces, and who or what we inhabit spaces with.”[40]  Edmund Husserl’s concept of the living body or the lived experience, that is defined as the self having knowledge of the body and the world through the body, takes on new meaning in the context of gender performativity and the gay or queer orientation.  Orientation or disorientation, as Ahmed notes, is an important element within the phenomenology spectrum, and an intellectual experience that involves an element of disorder.  Sexual orientation and a sense of identification to a social and cultural space, require a meaningful relationship between individuals and the world he/she inhabits.  However, if the individual experiences the world by rejecting the sociocultural predominate sexual orientation in such a way that disorientation takes place, then the sense of disorientation might map a new sexual orientation for that individual.  Ahmed explains, through the utilization of Merleau-Ponty’s writing, that the vital experience of the self of giddiness and nausea is the “awareness of our own contingency and the horror with which it fills us.”[41]  However, the self is able to overcome these moments of horror through a reorientation or a remapping of the body.  Therefore, “a queer phenomenology might involve a different orientation toward such moments.”[42]  Orientation, as Husserl states in Ideas II, begins with the world unfolding around the self, and is comprehended by the objects in that space.  However, if consciousness is intentional, then as Ahmed claims, “we are not only directed toward objects, but those objects also take us in a certain direction.  The world that is around has already taken certain shapes, as the very form of what is more and less familiar.”[43]  This then maps a new direction for the self, and becomes the self’s “general orientation toward the world.  The objects that we direct our attention toward reveal the direction we have taken in life.”[44]  The objects inform the self’s perception of the world.  To clarify this point, Ahmed uses the example of Adrienne Rich’s account of the process of writing and caregiving.  In her book Of Woman Born, Rich writes:

From the fifties and early sixties, I remember a cycle.  It began when I had picked up a book or began trying to write a letter…  The child (or children) might be absorbed in busyness, in his own dream world; but as soon as he felt me gliding into a world which did not include him, he would come to pull at my hand, ask for help, punch at the typewriter keys.  And I feel his wants at such a moment as fraudulent, as an attempt moreover to defraud me of living even for fifteen minutes as myself.[45]

This quotation provides an example of a caregiver who is reoriented away from one object (the book or letter) toward another object (the child).  This reorientation moves beyond the physical object and into the spatial-temporal of the lived experience that inhabits the schism between the writer and the mother.  Furthermore, even though the child is not in front of her, (instead the child might be behind her or to the side of her pulling at her hand) she, as the caregiver, is reoriented.  Thus, as Ahmed explains, whether we can maintain the self’s orientation toward an object, such as the book or letter “depends on other social orientations, which affect what we can face at any given moment in time.”[46]  This orientation of the body provides the self with its point of view of the world.  However, even though the book or letter and the child reorient the body, they provide two distinct types of object orientation.  These objects are seen in the quotation through, one, the book or letter that the body moves around, and two, the child that moves around the body.

         The self’s bodily horizon provides the self with a spatial-temporal setting within a given culture.  In this horizon, objects are found in the unfolding world that is the self’s living experience.  With sexual orientation, Ahmed claims “to become straight means not only that we have to turn toward the objects given to us by heterosexual culture but also that we must turn away from object that take us off this line.  The queer subject within straight culture hence deviates and is made socially present as a deviant.”[47]  This maps a path that the self follows over a given life, which Ahmed claims is performative.  The mapping of the queer subjects then are derived from “sexual orientations [that] are also performative: in directing one’s desire toward some others, and not other others, bodies in turn acquire their shape.”[48]  Thus, the mapping of the body through the performative actions of its desired Other, for example the gay body verse the straight body, shapes the body into the self.    

         This phenomenological mapping of the body through perfomativity of sexual orientation might shape the self, but as the human genome began to be understood in new ways, there was a growing argument that one’s desired sexual orientation was not a matter of choice.  In the early 1970s, genes began to be assigned to their correct location on the 23 pairs of chromosomes found in the human body.  This allowed a chromosomal map of the human genome to begin, and by the mid 1980s, a theory of a “gay” gene to be suggested.  In 1993, the openly gay molecular biologist Dean Hamer published the article “A Linkage Between DNA Markers on the X Chromosome and Male Sexual Orientation,” in the journal Science.[49]  This hypothesis provided the LGBT community with some backing from the scientific community, suggesting that homosexuality is innate, genetic, and, therefore, unchangeable.  Hanmer’s article was first announced on July 15, 1993 on National Public Radio, which summarized and agreed with the findings.  The article was published the following day inScience.  A few weeks later, a cover story entitled “Gay Gene?” ran in Newsweek, as did another in The Wall Street Journalentitled “Research Points Toward a Gay Gene” with a subheading, “Normal Variation.”[50]  These articles helped to map the course of the LGBT community, and rewrite the body from the perspective of genetic performativity as well as new concepts of gender on a genetic level.  Today, however, people like Hamer and others claim that there is no single gene that causes one to be homosexual or heterosexual.  Instead, they claim that sexual orientation is the result of a number of factors, such as the interaction and combination of genes in an individual’s genome, as well as environmental factors.       

The growing discussion of a “gay” gene leading up to Hamer’s claims coincided with the use of the AIDS Quilt, in 1988 as a symbol for the first World AIDS Day, and the beginning of the international endeavor known as the Human Genome Project (HGP).  All three of these paths were interwoven, and helped map a new understanding of what it means to be human, and each of these paths seems to intersect at the point of human’s quest for a better understanding of DNA.  The HGP was initiated for just this reason.  The goal of the project was to identify and map the approximately 20,000-25,000 genes in the human genome.  By mapping the genome, the scientific community hoped to have a better understanding of the human body, and as a result be able to advance medical treatments on a genetic level.  Never before had humans understood the molecular structure of the self and the process of anthropogenesis or the coming into being of Homo sapiens in such detail.  As the structure of the human genome began to be comprehended, new light was shed on human identity.  It was found that the DNA structures of humans and many other animals were remarkably similar.  The knowledge of the similarities of DNA among humans and non-humans precipitated a new understanding of the world and the binary frame of the subject and the object.  For example, scientists and philosophers Hub Zwart and Bart Penders concluded that biological evolution is related to cultural evolution in a more symbolic dance than had been previously thought.  Using the example that dairy herders develop lactose tolerance into adulthood, they postulate that certain cattle milk protein genes co-evolve with human lactase metabolism genes; specifically, they claim that, “our natural environment has been complemented or even eclipsed by a sociocultural environment of our own making.”[51]  As a result, “we can be considered ‘self-made’.”[52]  The complexity of this claim is further exhibited by looking at McClintock’s theories related to transposition. Through her intense analysis and mapping of maize genetics, she suggested that regulation in mutations occurred as cells formed in maize through controlled breakage (or dissociation) in the chromosome.  This process forms a mutation as a chromosomal segment crosses-over, from a parent cell to its offspring during meiosis, and being positioned into a new location on the chromosome.  The writer Evelyn Fox Keller argues the application of McClintock’s findings suggests an understanding that requires “rethinking the internal relation of the genome, exploring ways in which internal feedback can generate programmatic change.”[53]  Keller further postulates that McClintock’s ideas might necessitate a “rethinking [of] the relation between the genome and its environment, exploring the ways in which the DNA can respond to environmental influences.”[54]  The concept of transposition then becomes one that is reacting to both external and internal chains of chemical events on the molecular level.  If Zwart and Penders’, and McClintock’s concepts of evolution are true, they paint a much more complex picture than Darwin suggested, one in which both humans and their environment are reacting to one-another through calculated molecular changes.  Today, the evidence of this is beginning to be seen as both plants and animals react to global warming.  Such is the case in the recent discovery of a new hybrid shark species found off the coast of Australia.  It is believed this shark is more resident to extreme temperature changes.[55]  If it is true that both humans and their environments are evolving genetically due to human’s manipulation of their environment, then – as Merleau-Ponty rightfully claimed – the self’s subjective experience cannot be conceptualized as an internalized response to either discourse or practices external to the body, but instead must participate in the creation of the experience.  The body, as he outlined in his thesis on the corps proper (one’s own body) at the end of Phenomenology of Perception, is the vehicle through which the individual comprehends the phenomenal world.  The subject/object binary, is just perhaps, a much more complex interchange than has yet to be imagined.




Ahmed, Sara, “Orientations: Toward a Queer Phenomenology,” GLQ: A Journal of   

     Lesbian and Gay Studies12, no. 4 (2006): 543-574.

Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. New York:

     Routledge, 1990.

De Beauvoir, Simone.The Second Sex, trans. H.M. Parshley. New York: Random

     House, Inc., 1989.

Dent, Tony. HIV, Mon Amour. New York: The Sheep Meadow Press, 1999.

“Epidemiologic Notes and Reports Possible Transfusion-Associated Acquired Immune

     Deficiency Syndrome, AIDS-California.” CDC – Morbidity and Mortality Weekly

     Report, December 10, 1982, 652-654. 

Foucault, Michel. “Nietzsche, Genealogy, History,” in Language, Counter-Memory,

     Practice: Selected Essays and Interviews by Michel Foucault, trans. Donald F.

     Bouchard and Sherry Simon. Ithaca: Cornell University Press, 1977.

Gamosn, Josh. “Silence, Death, and the Invisible Enemy: AIDS Activism and Social

     Movement ‘Newness’.” Social Problems no. 4 (October 1989): 351-367.

Halperin, David. “The Normalizing of Queer Theory.” Journal of Homosexually 45, no.

     2/3/4 (2003) 339-343.

Hamer, D.H. and others. “A Linkage Between DNA Markers on the X Chromosome and 

     Male Sexual Orientation.” Science no. 5119 (July 1993): 321-327.

Haraway, Donna. Simians, Cyborgs and Women: The Reinvention of Nature. New

     York: Routledge, 1991.

Herek, Gregory M. and Capitanio, John P“AIDS Stigma and Sexual Prejudice.

     American Behavioral Scientist no. 7 (April 1999): 1126-1143.

Husserl, Edmund. Ideas: General Introduction to Pure Phenomenology. New York:

     Humanities Press, 1969.

Jones, Cleve. The Making of an Activist: Stitching A Revolution. New York: Harper

      Collins Publisher Inc., 2000.

Keller, Evelyn Fox. A Feeling for the Organism: The Life and Work of Barbara

     McClintock. San Francisco: W.H. Freeman and Company, 1983.

Kristeva, Julia. Desire in Language: A Semiotic Approach to Literature and Arttrans.

     Thomas Gora, Alice Jardine and Leon S. Roudiez. New York: Columbia Univeristy

     Press, 1980.

Levine, Joe. “AIDS: Prejudice and Progress.” Times Magazine, September 8, 1986.,9171,962215,00.html.

Masur, H. and others. “An Outbreak of Community Acquired Pneumocystis Carinii

     Pneumonia: Initial Manifestation of Cellular Immune Dysfunction.” New England

     Journal of Medicine, no. 24, December 10 (1981):1431-1438.

McKusick, Victor A. “The Gene Map of Homo sapiens: Status and Prospectus.” Cold 

     Spring Harbor Symposia Quantitative Biology 51 (1986): 15-27.

Merleau-Ponty, Maurice. The Phenomenology of Perception. trans. Colin Smith. New

     York: Routledge, 2008.

Merleau-Ponty, Maurice. The Structure of Behavior. trans. Alden L. Fisher. Boston:

     Beacon Press, 1963.

O’Carroll, Eoin. “New Hybrid Sharks Discovered: Signs of Global Warming?” The

     Christian Science Monitor, January 3, 2012.


“Pneumocystis Pneumonia – Los Angeles,” CDC – Morbidity and Mortality Weekly

     Report, June 5, 1981, 1-3.

“Research Points to a Gay Gene,” Wall Street Journal, July 16, 1993.

Rich, Adrienne. Of Woman Born: Motherhood as Experience and Institution. New

     York: W. W. Norton & Company Inc., 1976.

Sorva, R. and others. “Growth Evaluation: Parent and Child Specific Height Standards.”

     Archives of Disease in Childhood no. 10 (October 1989): 1483-1487.

Teplica, David. “The Genetic Basis of Body Shape: Lessons from Mirror Twins and

     High-Definition Digital Photography.” Virtual Mentor 12, no. 5 (May 2010): 412-417.

“Voices: The Miracles of Ryan White,” Time Magazine, April 23, 1990.,9171,969879,00.html.

Zwart, Hub and Penders, Bart. “Genomics and the Ark: An Ecocentric Perspective on

     Human History.” Perspectives in Biology and Medicine 54, no. 2 (spring 2011): 217- 








[1] Tony Dent. HIV, Mon Amour (New York: The Sheep Meadow Press, 1999), 37.

[2] Even though Jones always envisions the making of the AIDS Quilt on a grand scale, it became more than

  he could have imaged, becoming an international symbol used by AIDS activists.  Therefore, to clarify

  certain points within this paper, a distinction is made between the AIDS Quilt and the organization that

  made the quilt, the NAMES Project, which later became known as the NAMES Project Foundation.

[3] V.A. McKusick, “The Gene Map of Homo sapiens: Status and Prospectus,” Cold Spring Harbor

  Symposia Quantitative Biology 51 (1986): 15.

  (accessed May 25, 2011).

[4] Evelyn Fox Keller. A Feeling for the Organism: The Life and Work of Barbara McClintock (San

  Francisco: W.H. Freeman and Company, 1983), 5.

[5] R. Sorva and others, “Growth Evaluation: Parent and Child Specific Height Standards,” Archives of

  Disease in Childhood no. 10 (October 1989): 1483-1487. (accessed December 13, 2011).

[6] David Teplica, “The Genetic Basis of Body Shape: Lessons from Mirror Twins and High-Definition

  Digital Photography,” Virtual Mentor no. 5 (May 2010): 412-417. (accessed December 9, 2011).

[7] David Halperin, “The Normalizing of Queer Theory,” Journal of Homosexually 45, no. 2/3/4 (2003):


[8] Donna J. Haraway. Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge,

  1991), 203-204.

[9] Ibid., 203-230.

[10] “Pneumonia-Los Angeles,” CDC-Morbidity and Mortality Weekly Report, June 5, 1981, 1-3.

[11] Cleve Jones. The Making of an Activist: Stitching A Revolution (New York: Harper Collins Publisher

   Inc., 2000), 88-91.

[12] Gregory M. Herek and John P. Capitanio, “AIDS Stigma and Sexual Prejudice,” American Behavioral 

   Scientist no. 7 (April 1999):1126.

[13] H. Masur and others, “An Outbreak of Community Acquired Pneumocystis Carinii Pneumonia: Initial

   Manifestation of Cellular Immune Dysfunction,” The New England Journal of Medicine no. 24

   (December 10, 1981): 1431-1438. 

[14] “Epidemiologic Notes and Reports, Possible Transfusion-Associated Acquired Immune Deficiency

   Syndrome, AIDS-California,” CDC-Mobidity and Mortality Weekly Report, December 10, 1982, 652-


[15] Cleve Jones. The Making of an Activist: Stitching A Revolution (New York: Harper Collins Publisher

    Inc., 2000), 88-93.

[16] Ibid., 105.

[17] Ibid., 105.

[18] Milk was the first openly gay man to be elected to public office in California; he was killed after only

   eleven months in office.  Ibid., 48-53.

[19] Ibid., 107.

[20] Ibid.,112-113.

[21] Josh Gamson, “Silence, Death, and the Invisible Enemy: AIDS Activism and Social Movement 

   ‘Newness’,” Social Problems no. 4 (October 1989): 355.

[22] Ibid., 355.

[23] Cleve Jones. The Making of an Activist: Stitching A Revolution (New York: Harper Collins Publisher

    Inc., 2000), 88-96.

[24] “Voices: The Miracle of Ryan White,” Time Magazine, April 23, 1990,,9171,969879,00.html (accessed May 3, 2011).

[25] Joe Levine, “AIDS: Prejudice and Progress,” Times Magazine, September 8, 1986,,9171,962215,00.html. (accessed May 3, 2011).

[26] Cleve Jones. The Making of an Activist: Stitching A Revolution (New York: Harper Collins Publisher

    Inc., 2000), 123.

[27] Cleve Jones. The Making of an Activist: Stitching A Revolution (New York: Harper Collins Publisher

    Inc., 2000), 97.

[28] Ibid., 97.

[29] Ibid., 246.

[30] Ibid.,136.

[31] Ibid.,166.

[32] Judith Butler. Gender Trouble (New York: Routledge, 1990), 129.

[33] Ibid.,136.

[34] Ibid.,136.

[35] Ibid.,140.

[36] Ibid.,141

[37] Michel Foucault. “Nietzsche, Genealogy, History,” in Language, Counter-Memory, Practice: Selected

   Essays and Interviews by Michel Foucault, trans. Donald F. Bouchard and Sherry Simon (Ithaca: Cornell

   University Press, 1977), 148.

[38] Cleve Jones. The Making of an Activist: Stitching A Revolution (New York: Harper Collins Publisher

    Inc., 2000), 62.

[39] Ibid.,104-107.

[40] Sara Ahmed, “Orientations: Toward a Queer Phenomenology” GLQ: A Journal of Lesbian and Gay

   Studies 12, no. 4 (2006): 543.

[41] Marice Merleau-Ponty. The Phenomenology of Perception, trans. Colin Smith (New York: Routledge,

   2008), 296.

[42] Sara Ahmed, “Orientations: Toward a Queer Phenomenology” GLQ: A Journal of Lesbian and Gay

   Studies12, no. 4 (2006): 544.

[43] Ibid., 545.

[44] Ibid., 545.

[45] Adrienne Rich. Of Woman Born: Motherhood as Experience and Institution (New York: W. W. Norton

   & Company Inc., 1976), 23.

[46] Sara Ahmed, “Orientations: Toward a Queer Phenomenology,” GLQ: A Journal of Lesbian and Gay

   Studies 12, no. 4 (2006): 547.

[47] Ibid., 554.

[48] Ibid., 547.

[49] DH Hamer and others, “A Linkage Between DNA Markers on the X Chromosome and Male Sexual

   Orientation,” Science no. 5119 (July 1993): 321-327.

[50] “Research Points to a Gay Gene.” Wall Street Journal, July 16, 1993.

[51] Hub Zwart and Bart Penders, “Genomics and the Ark: An Ecocentric Perspective on Human History,”

   Perspectives in Biology and Medicine 54, no. 2 (spring 2011): 218.

[52] Ibid., 218.

[53] Evelyn Fox Keller. A Feeling For The Organism: The Life and Work of Barbara McClintock (San

   Francisco: W. H. Freeman and Company, 1983), 193.

[54] Ibid., 193-194.

[55] Eoin O’Carroll, “New Hybrid Sharks Discovered: Signs of Global Warming?” The Christian Science

   Monitor, January 3, 2012.

   Signs-of-global-warming. (accessed January 8, 2012).