Intersections: Gender and Sexuality in Asia and the Pacific
Issue 26, July 2011

    Who Counts?
    Hawai'i's Mahuwahine (Male-to-Female Transgenders)
    and Vulnerability to HIV/AIDS[*]

    Linda L. Ikeda

      Figure 1. Kulia Na Mamo's Executive Director, Ashliana Hawelu (kneeling, front right),
      surrounded by staff and program participants. Source: Kulia Na Mamo, Honolulu, HI; circa 2005.

    1. Transgender women, the focus of this writing, are individuals who are classified as male at birth and identify, to varying degrees, as female—known in Hawai'i as mahuwahine.[1] This term 'signifies male-to-female identity in various and personally chosen forms.'[2] It also speaks to a sense of empowerment through reclamation of the term mahu, which is often used to belittle or derogate.[3]
    2. Like transgenders in the continental U.S. and Canada, mahuwahine are faced with systematic and institutionalised discrimination, resulting in their exclusion from health care, education and employment. With focus on a local segment of the population in Hawai'i, Carol Odo and Ashliana Hawelu report that mahuwahine are less likely (than those who are not transgender) to be college-educated; are routinely underemployed; are at risk for HIV, incarceration and substance abuse; experience severe stigmatisation and harassment; generally lack access to healthcare; and are at exceptional risk for early mortality. Given this backdrop of diminished opportunity, many of Hawai'i's transgenders have been relegated to the red-light district, where they engage in sex work and drug dealing for survival.[4]
    3. Sadly, this scenario is neither particular to Hawai'i nor rare. A recent U.S. survey of transgenders by Jaime Grant and others revealed the following. Respondents were nearly four times more likely to live in extreme poverty, with household incomes of less than $10,000. Respondents were twice as likely to be unemployed and 25 per cent reported being fired over their gender identity or expression. Half said they had experienced harassment or other mistreatment in the workplace. One in five became homeless because of their gender identity or expression and 19 per cent had been refused a home or apartment. Additionally, 19 per cent reported being refused health care, 31 per cent reported harassment or bullying by teachers, and a striking 41 per cent had attempted suicide, compared to 1.6 per cent of the general population.[5]
    4. Even more, in category after category, the study showed that transgenders of colour faced more pronounced discrimination and higher negative outcomes. For example, African-American respondents reported unemployment levels at twice that of other respondents, or four times the national average. According to Lisa Mottet, a key author of the report, the data show 'the compounding effects of racism...with anti trans bias that combines to cause devastation and life-threatening discrimination for transpeople of color.'[6] This inequality and discrimination, she noted, 'will persist as long as laws are inadequate for addressing issues of institutional bias against sexual minority persons generally, and in the area of health care specifically.'[7]
    5. Whether in reference to race, ethnicity or sexual minority status, the resultant existence and persistence of substantial disparities in mortality, morbidity and hazardous environmental exposures have been well documented in various literatures, particularly since the 1960s. This does not mean, however, that such disparities have been addressed. The Centers for Disease Control (CDC), for instance, admit to 'less than adequate progress towards eliminating health disparities for the majority of objectives among segments of the U.S. population.'[8] Additionally, disparities by sexual minority status receive almost no attention at the national and state levels, though as a high-risk classification, the CDC does track men who have sex with men (MSM)—a classification understood as 'related but not identical to sexual orientation, identity, or attraction.'[9]
    6. This set of circumstances results in the invisibility of sexual minorities, which is generally attributed to their relatively small numbers. It may be more productive, however, to recognise this lack of attention, as well as its justification, as a marginalising process, with the omission of these groups from data collection and research as one outcome. Given this catch-22, I am reminded of a passage by Leslie Feinberg (a transgender activist and author)—the very same passage that had prompted tears on the part of one of my research participants, at the time of my study defense. In a section on transgender organising, Feinberg writes that:

        We battled for the right to be hired, walk down the street, be served in a restaurant, buy a carton of milk at a store, play softball or bowl. Defending our rights to live and love and work won us respect and affection from our straight co-workers and friends. Our battle helped fuel the later explosion of the lesbian and gay liberation movement.[10]

    7. The struggles he mentions—to be hired for a decent job, walk down the street without harassment, shop for necessities without ridicule—may seem, to some, mundane and insignificant. It is on this level, however, that everyday occurrences of discrimination, in which many people are complicit, come to light.
    8. We now have a word for these occurrences, along with greater understanding of their effects. Derald Sue and his colleagues have likened these types of discrimination to carbon monoxide—'invisible,' at least to perpetrators, 'but potentially lethal.'[11] Though typically overlooked due to their commonness, these 'microaggressions'—or routine slights, insults, invalidations, and indignities—take their toll on the bodies and psyches of sexual and racial minorities, shaping the battleground described by Feinberg. The power of these microagressions lies in their insidious nature, as often well-meaning perpetrators become complicit in creating and maintaining the disparities faced by minority persons in every sphere. And though these microaggressions tend to go unrecognised, they are neither innocent nor innocuous. In fact, because of their unrecognised status, they may be even more harmful than acts that are overt, conscious, or deliberate.[12] Even more, Chester Pierce claims that their collective effects can result in 'diminished mortality, augmented morbidity, and flattened confidence'—in other words, deadening, of both the spirit and the body.[13]
    9. Examination at the level of ordinary lived experience, where these microaggressions occur, may be more constructive for transgenders than continued theorizing.[14] Speaking in reference to Viviane Namaste's work, Jacob Hale states:

        The focus on identity renders invisible the obstacles to buying bread, making photocopies, or getting one's shoe fixed, because it elides the ways in which transsexuals are institutionally oppressed, marginalised, and erased, and the ways in which oppression of transsexuals is linked to other systematic forms of oppression, such as those based on class, occupational status, and race or ethnicity.[15]

      Though identity may be a theoretical or even political area of contestation (as well as another area of marginalisation), trans identity, even in its non-recognition, can be observed through its daily tangible and material effects. Through processes of social exclusion, with which we are a part, the lives of mahuwahine, or Hawai'i's male-to-female transgenders, become linked with hardship, poverty and illness, including HIV/AIDS.
    10. The marginalising of this population is reflected in surveillance and research data, where they are ill represented and often excluded altogether, sometimes as a result of classifications with which they cannot identify (for example, as men who have sex with men). Reliance on conventional (as opposed to traditional or indigenous) understandings, whether in study design or conduct, detracts from research efforts, in turn, affecting interventions. Additionally, this group is affected by the shift in the conceptualisation of 'risk'–initially associated with behaviours and sometimes with illness, now applied to the population, itself. Finally, the use of mainstream (typically evidence-based) models results in interventions for transgenders which tend to lack specificity and even translatability, whether linguistic or cultural, hampering their success. Though providers can make adaptations, these balancing acts are labour and time intensive and never easy to achieve.
    11. It is astounding, then, that despite these many factors resulting in health inequities, the level of HIV among Hawai'i's transgenders is significantly lower than levels reported elsewhere. While there are several plausible explanations for this, one is the presence of protective factors, seemingly related to community and cultural assets.

      Understandings of mahu or mahuwahine
    12. 'O au no keia in the Hawaiian language means, 'This is who we are.'[16] In Hawai'i, the term mahu historically has been used to describe a two-spirited person, a person of mixed gender, or one who embodies a third gender. Unlike transgendered persons or persons who identify as homosexual, the mahu transcends binary male/female gender roles, is not limited to one gender (may blend genders), or may even transition from one gender to another.[17] As explained by Niko Besnier, such identities emerge through social practice rather than a priori social categories.[18]
    13. Mahu in Hawai'i—much like the fa'afafine of Samoa, fakaleiti of Tonga, lae'lae in the Cook Islands, and mahu in Tahiti—were accepted and respected in their communities and some served as healers.[19] In post-colonial Hawai'i, however, mahu were stigmatised and suffered severe discrimination.[20] This loss of status has been attributed, in part, to the influence of Christian missionaries, who deemed Hawai'i's gender norms and sexual customs, as they perceived them, as deviant and in need of correction.[21]
    14. Beyond religious influence and colonisation, understandings of mahu have been affected also by psychosexual definitions: for example, 'a man who assimilates his manners and dresses his person like a woman,' a 'homosexual of either sex,' or a 'hermaphrodite.'[22] More recently, the term has been used to describe gay men, drag queens, transvestites and transgender sex workers. In all cases, the term is recognised as denigrating, reflective of the standard western negativity about gender variance.[23] Because of this negativity and because, traditionally, sexuality was considered private and not central to identity, most Pacific Islanders who live gender-variant roles tend to resist terms that are centred on sexuality and sexual preference—terms such as transgender, gay, transsexual and homosexual.[24] Instead, Pacific Islanders may rely on indigenous understandings, more centred on aspects of the person in relation to the family and to the community.[25]

      National understandings of transgender
    15. Transgenders are estimated to represent 0.25 per cent to 1 per cent of the general population.[26] These figures, however, are underestimates, derived primarily from clinical samples of people seeking mental health or medical care, often around transitioning. People who do not seek these services, which may include the majority of transpersons in particular regions, go uncounted.
    16. Defined broadly, this subpopulation includes those whose gender identity does not conform to societal norms associated with sex at birth.[27] According to Walter Bockting and Sheila Kirk, this umbrella definition includes:

        cross-dressers or transvestites (those who desire to wear clothing associated with another sex), male-to-female and female-to-male transsexuals (those who desire or have undergone hormone therapy and/or sex reassignment surgery), transgenderists (those who live in the gender role associated with another sex without desiring sex reassignment surgery), bigender persons (those who identify as both man and woman), drag queens and kings (usually gay men and lesbian women who 'do drag' and dress up in, respectively, women's and men's clothes), and female and male impersonators (males who impersonate women and females who impersonate men).[28]

      Also, while some transgenders, whether male-to-female or female-to-male, experience their gender identity as incongruent with their anatomy and seek body modification (for example, through hormones, cosmetic procedures or sex reassignment surgery), others do not; and while some may pursue gender expression through behaviour or self-presentation (for instance, through clothing or mannerisms), others may identify with a view of gender outside of the conventional male/female binary altogether.[29]
    17. This breadth makes for an unwieldy grouping, particularly as a target population for health prevention interventions. Also, while attention has been paid to certain transgender-specific HIV risks and prevention needs, at least since 1992, the particular needs of mahuwahine remain only marginally addressed.[30] This is, in part, due to their unintelligibility as 'proper subjects,' resulting in their absence from the public health sphere.[31]

      Surveillance data

      National data.
    18. There are no national HIV/AIDS surveillance data for the transgender population. Local data, however, suggest disproportionately high rates of HIV with estimated infection rates among specific transgender populations ranging from 14 per cent to 69 per cent.[32] One recent meta-analysis, for example, revealed a 27.7 per cent HIV prevalence among transgender women in the U.S., with 11.8 per cent self-reporting as seropositive.[33] Similarly, an international review, encompassing fourteen countries including the U.S., revealed an overall 27.3 per cent HIV prevalence among transgender women involved in sex work, with 14.7 per cent prevalence among transgender women who were not engaged in sex work.[34]
    19. With reference to race, African Americans have the highest rate of new HIV infections and new AIDS cases of any racial/ethnic group, followed by Native Hawaiians/Other Pacific Islanders, Latinos, American Indians/Alaska Natives, Whites and Asians.[35] Given Hawai'i's demographics (51% Asians and Pacific Islanders), it may be useful to note that while the prevalence of HIV among Asians and Pacific Islanders remains relatively low, evidence suggests that the number of Asians and Pacific Islanders living with AIDS has been on the rise.[36] Additionally, while the total number of reported AIDS cases has declined over the past five years for Whites, it has increased in the Native Hawaiian/Pacific Islander populations.[37]
    20. These data are limited, however, and may not be that meaningful as many of the (now 37) states involved in collecting surveillance data for the CDC do not recognise Asians and Pacific Islanders as a discrete category, but subsume them under a generic 'Other.'[38] Regional issues limit the relevance of these data also, with most studies taking place in large urban areas (such as San Francisco or Los Angeles), where the Asian and Pacific Islander demographics differ widely from that of Hawai'i. Additionally, many studies rely on non-probability methods that tend towards overestimates, though these may be appropriate and are sometimes the only methods for accessing hard-to-reach populations.[39] Finally, most data on Asians and Pacific Islanders are presented in aggregate fashion, merging the data on Asian immigrants with that on indigenous Pacific Islanders. For Hawai'i, this obscures the heightened prevalence of HIV among Pacific Islanders, including Native Hawaiians, who have the highest prevalence after Caucasians.[40]

      Hawai'i data.
    21. According to the Hawai'i State Dept. of Health, there are a number of factors detracting from accurate statistics on the number of people in the state living with HIV. First, only AIDS, and not HIV infection, was reportable in Hawai'i until August 2001, when HIV became reportable by a unique test code. Also, Hawai'i experiences a significant influx of persons living with HIV each year, in part related to tourism (with five times as many people visiting as actual residents), yet only those cases originally diagnosed in Hawai'i are included in reports.[41]
    22. In March 2008, however, Hawai'i changed its Administrative Rules to require named HIV reporting along with AIDS and CD4 reporting by health care providers and laboratories. The most recent report reveals the following:

        A total of 863 Hawai'i-diagnosed HIV (not AIDS) cases were…reported by December 31, 2009. This plus 3,152 Hawai'i-diagnosed AIDS cases results in a total of 4,015 Hawai'i-diagnosed HIV/AIDS cases. Of these, there are currently 2,169 individuals known to be living with HIV/AIDS. Collection of HIV (not AIDS) cases is still incomplete. In addition, Hawai'i has 1,064 HIV/AIDS cases that were initially diagnosed elsewhere but also reported in Hawai'i.[42]

    23. The proportional distribution of AIDS cases among racial/ethnic groups has changed in Hawai'i since the beginning of the epidemic. The proportion of cases among Caucasians decreased from 72.9 per cent before 1991 to 62.7 per cent in 1991 to 1995, then decreased again to 55.9 per cent in the years 1996 to 2000. During these same periods, AIDS cases in Hawai'i increased among Hispanics, African-Americans and Asians and Pacific Islanders.[43] HIV/AIDS also has had a disproportionate effect on rural and poor Native Hawaiians, as evidenced by the percentage of the population affected by AIDS (11%, disproportionate to their 8.6% presence in the state); a rising AIDS mortality rate, despite improved treatment options; and the lower number of HIV relative to AIDS cases (5% to 9%), suggesting either inadequate screening or care.[44]
    24. Finally, of the 187 people testing positive for HIV in the years 2002 through 2005 (the most recent data set available), most were Caucasians (47%), followed by Asians and Pacific Islanders (35.2%), disproportionate to their representation in the state (31.4% and 51%, respectively). Looking at risk categories, most were MSM (over half), along with those who fell into multiple risk groups (18.2%), with just four transgenders (one FTM and three MTFs) identified, among these.[45]

      Lack of data on transgenders.
    25. Government and researchers cite a number of explanations for the lack of data on transgenders. One significant problem is that of operationalising transgender, due to differences in the ways the term is defined or used, especially over time.[46] There is also confusion around the matter of transgender identity and how this fits with sexual orientation, which is sometimes based on anatomy and other times on gender identity.[47] Complicating this further, both gender and sexual orientation may be viewed as fluid, resulting in shifting identifications and responses to health survey items, across time.
    26. Partly as a result of this confusion and because of the small numbers of transgenders reported in the U.S. and elsewhere, MTF transgenders often end up classified as MSM. This is the CDC term for men who have sex with men, intended (with its focus on behaviour rather than identity) to be inclusive of men who may not identify as gay. This term is a misclassification, however, when applied to transgenders.[48] Recognising this, many local jurisdictions, including Hawai'i's Department of Health, have attempted to remedy the problem, primarily through separation of transgenders from MSM in data collection.
    27. Another solution, however, would be to dispense with the male/female binary, which allows for just one option or the other. The Urban Coalition for HIV/AIDS Prevention Services, for example, (as well as Kulia Na Mamo's external evaluator, Lyndall Ellingson), have suggested the use of inclusive forms with two separate questions: one for sex assigned at birth and another for current sex or gender. The Urban Coalition recommends also that forms offer gender identity options for 'transgender female' and 'transgender male,' as well as 'gender variant' and 'additional,' allowing users to state their specific identity.[49] In combination, these changes in data collection would remedy this particular classification problem.

      HIV prevention
    28. HIV among transgenders has been attributed to risky sexual behaviours such as unprotected sex, multiple sexual partners and inconsistent condom use while selling sex; alongside contextual issues, including mental health problems, physical abuse, social isolation, economic marginalisation and unmet healthcare needs.[50] Additionally, it has been noted that many transgender women engage in sex work due, in part, to stigma and employment discrimination, which limits their opportunities for income generation and makes it difficult to meet even basic survival needs.[51]
    29. These attributions, while taking into account the effects of social exclusion, still place individual behaviours at the forefront. According to Colleen O'Manique, our understanding of AIDS is premised on neoliberal conceptions, positing that 'the rational, isolated individual is the fundamental unit of society, and the market, the natural and just distributor of societies' needs.'[52] Consistent with this perspective, HIV prevention remains focused primarily on changing individual behaviours, with little regard for social context, meanings or cultures, which are typically perceived as static and constant. Even more, culture and tradition have come to be viewed, not only as barriers to behaviour change and thereby health, but as epidemiological variables of risk.[53]
    30. For the campaign against AIDS, often termed the 'AIDS industry,' only two groups hold authority—'those who control the science and medicine…and those in government who decide the allocations of resources to the HIV/AIDS programs and organisations,' both governmental and non-governmental.[54] This arrangement fosters reliance on a universal framework, alongside uniform strategies for prevention and care. This serves to convey the neutrality and, thereby, the natural universality of the framework and the information promoted; at the same time, 'solving' the problem of cultural difference, now relegated to a matter of 'fine-tuning information delivery.' The result is the oversight of local understandings, explanations, and meanings that might deviate from western or scientific forms of knowledge, typically viewed as the 'misconceptions' that the HIV prevention and health education messages are meant to correct.[55]
    31. As explained by O'Manique, emphasis remains on promotion of a particular notion of health, alongside particular (that is, biomedical and western) standards of behaviour for health maintenance. This is the case, not because these approaches offer the most comprehensive framework for understanding and responding to AIDS, but because of 'the power and legitimacy of the institutions from which they emerge, and society's faith in their analyses.'[56]

      Hawaiian culture and the legacy of colonisation
    32. Hawai'i's diversity complicates HIV prevention and services, both culturally and linguistically.[57] Not only is the state home to a non-western majority—51 per cent of Hawai'i's 1.29 million residents are Asians and Pacific Islanders, with many (20%) identifying as mixed race and 17 per cent foreign born; it is also home to indigenous Native Hawaiians, currently comprising 8.6 per cent of the population.[58] This lumping together of Asians with Pacific Islanders and subsuming of Native Hawaiians as a Pacific Islander subset may be useful for Census purposes, but detracts from the usefulness of data for purposes of prevention. Even more troublesome, the legitimacy of biomedicine in the U.S. 'obscures the social and historical processes that produce HIV vulnerabilities' contemporarily.[59]
    33. Even a cursory look back reveals the health situation in Hawai'i as complicated by a legacy of colonisation and imperialism, dating back to at least 1788 when Captain James Cook of the British Royal Navy first 'discovered' the (previously discovered and already inhabited) Hawaiian (dubbed Sandwich) Islands. Within a period of just 100 years, the imperialist expansion project of Europe and America resulted in the decimation of roughly 90 per cent of the original Native Hawaiian population.[60] This was due, in part, to warfare and cultural and material dispossession, but largely to the introduction of contagious diseases previously unknown to the islands––such as tuberculosis, cholera, measles and sexually transmitted diseases, including syphilis and gonorrhea.[61]
    34. Contemporarily, this legacy has resulted in a situation whereby Native Hawaiians in Hawai'i 'continue to have the worst health and socioeconomic indicators of the various ethnic groups in their home islands.'[62] Compared with other ethnic groups in the U.S., Native Hawaiians' rates of heart disease, asthma, cancer, diabetes, accidents and mortalities are 'startling.'[63] This biomedical account, however, fails to take into consideration the vitality of earlier generations.[64] It also narrows health to individualism and matters of self-control (for example, exercising and maintaining a 'good' diet). Further, this narrow conception is at odds with traditional understandings of health, linked with 'social and family relationships and the land that you and your ancestors occupy'—the very resource lost to Native Hawaiians during and after colonisation.[65]

      Risk and protective factors

      Risk and stigma.
    35. In addition to the problems around the seeming incommensurability of indigenous knowledge with biomedical knowledge, epidemiological understandings of risk, still commonly in use, have been widely criticised in the social sciences. These understandings initially focused on 'risk' behaviours, then lapsed into identification of risk groups and even populations.[66] Such groupings tend to erase with-in group differences and nourish 'the illusion that AIDS is a disease of the marginal or foreign, from which the majority of the population is safe.'[67] Even more, these risk categories are most heavily focused on already marginalised populations, leaving them positioned for additional stigma and discrimination.[68]
    36. This outcome of additional stigma holds true whether the association is one linked with HIV/AIDS—by either the actual virus or the behaviours believed to have led to infection, or with the behaviour-based categories of persons most at risk. Using CDC terms, these categories are known as 'most at risk populations' (or MARPS), which include men who have sex with men (MSM), injection drug users (IDU), and sex workers (SW) —categories already linked with transgenders in the social imaginary.[69] As Janet McGrath explains, 'The association with an incurable disease is then used as medical justification for established patterns of exclusion of groups already deemed morally questionable.'[70]

      Risk structures.
    37. In light of these problems, some have proposed the application of historical and contemporary risk structures, with historical risk defined as longitudinal across the life cycle, and contemporary risk involving social networks. This, they argue, would help to move us past the 'methodological individualism' that pervades the social scientific and health research.[71] As an example, Tooru Nemoto and his colleagues cite stigma as leading to depression, and discrimination and denial of basic life needs (such as jobs or housing) as leading to unemployment and financial distress. These, in turn, are understood as potentially leading to substance abuse and commercial sex work, the behaviours identified as high risk.[72]
    38. Similarly, in my own project, I note this same trajectory, but identify some of its earlier sources, for example, harassment in the school and ostracism from the family, making educational and work gains difficult, if not impossible, precisely at a (developmental) time when these may be most critical.[73] It is these types of risk structures that leave transgenders socially and economically vulnerable, compounding their risks for HIV and often leading to risk behaviours.[74]

      Behavioural risk factors.
    39. Given a framework that allows for 'the reality and complexity of identities; the fluidity of social life; the power of cultural categories, meanings, and values; and the impact of stigma and discrimination,'[75] it is possible to identify the behaviours that put transgenders at risk, at least in specific situations. As noted by several researchers (both within and beyond the U.S.), these unsafe behaviours involve unprotected sex—though not with clients or customers, but with primary (or intimate) partners.[76] Don Operario and Nemoto, for example, based on a sample of 110 Asian and Pacific Islander transgender women in San Francisco, found that condom use approached 100 per cent with clients and 96 per cent with casual partners, at least as self-reported. Condoms often went unused, however, with primary partners—for reasons reportedly related to trust, intimacy and emotional connection, as well as gender validation.[77] This understanding warrants change in prevention messages for transgender women, alongside other messages more closely attuned to cultural values and practice.

      Health risks related to transitioning
    40. With regard to the issue of body modification, there is a growing body of literature on the specific health risks and complications posed by injections for hormone (such as testosterone or estrogen) and/or silicone use, especially when accessed through the street or over-the-counter, without medical oversight. For many transgenders, however, bypassing medical supervision is viewed as preferable. Many cannot afford hormone therapy or sex reassignment surgery, as both are typically excluded from healthcare insurance plans; and even insured patients may not want to subject themselves to medicine's stigmatising diagnostic and procedural practices, though these may be required by providers for reimbursement for services. Street hormones and silicone provide cheap alternatives, allowing for a passing appearance and thereby some safety—from harassment, ostracism, ridicule and even arrest. These injections, however, may be obtained under unsanitary conditions posing risk of viral infections, including hepatitis and HIV. Further, the injection of silicone, in many cases, has led to systemic illness and disfigurement which, for some, has resulted in death.[78]

      Community and cultural assets and protective factors.
    41. Given the many obstacles to health and the serious limits to our knowledge and interventions, it is amazing to find that the level of HIV among Hawai'i's mahuwahine is lower than levels found elsewhere.[79] Since 2002, when Hawai'i began tracking transgenders as a separate category, only four (one FTM and three MTFs) have tested positive.[80] Possible explanations are their choice of low-risk heterosexual men as sexual partners and the availability of medically administered hormones minimising the risk of black market alternatives, at least on O'ahu (Hawai'i's most populated island).[81] It is also possible, however, that screening is inadequate, leaving those who are seropositive undiagnosed.
    42. Another explanation, typically overlooked, might be the protective factor of community and culture, likely related to the acceptance of mahuwahine and their social place in traditional, pre-colonial Hawai'i.[82] While this acceptance and its effects have been noted in several writings and on film, it has been insufficiently explored by health researchers in relation to HIV (and other disease) prevention.[83] This oversight is understandable, however, in its consistency with the conventional and commonly held view of culture as an obstacle and hindrance, rather than an asset, at least with regard to HIV prevention.

      Reliance on evidence-based prevention interventions
    43. The U.S. has relied heavily on the dissemination of packaged science-based behavioral interventions to fight HIV. Racial, ethnic, and sexual minority communities, however, have been called upon to modify these interventions, with little regard for local knowledge or successes, and with great emphasis on adherence to protocols.[84]
    44. Guillermo Bernal and his colleagues have defined cultural adaptation as the systematic modification of an evidence-based intervention to consider language, culture and context in a way that is compatible with a client's (or population's) cultural patterns, meanings, and values.[85] The goal is to retain core intervention components while making changes to affect engagement and/or targeted outcomes.[86] At best, however, cultural adaptations of evidence-based interventions have been shown to be only moderately effective, with mixed results, depending on the target population.[87] Even less promising, Stanley Huey and Antonio Polo found that the utility of cultural adaptations remains ambiguous.[88]
    45. As sensible as the idea of evidence-based empiricism might sound, the reality is of a reliance on interventions designed by and for mainstream populations, adapted to accommodate 'specialness.' As no evidence-based prevention interventions exist for transgenders, communities are left to find suitable alternative interventions, which they must adjust, test, and monitor—always weighing the need for fidelity against the need for changes 'to reconcile intervention-consumer mismatches.'[89] In this way, prevention interventions may be compromised and 'special' populations disadvantaged.


      Figure 2. Kulia Na Mamo staff and program participants.
      Source: Kulia Na Mamo, Honolulu, HI; circa 2005.

      We are in a decisive struggle, not just to contain a particular disease, but to alter the way we live.[90]

    46. How are we to understand the situation of Hawai'i's transgenders? With little chance of their full inclusion in data-collection efforts or research studies, at least in the near future, what hope is there for the development of meaningful interventions or of equitable resource allocation? Even more, can this cycle of erasure, leading to continued erasure, be broken? What will this require and who should take the lead?
    47. In response to these questions, it is helpful to remember that health disparity issues are not isolated health system problems. In fact, health disparity is the cumulative result of both past and current forms of public policies, whether local or national.[91] Within the U.S., barriers to quality health care may manifest in: lack of economic access to health care, prejudice or insensitivity of physicians and other healthcare providers, discriminatory policies and practices, lack of linguistic and cultural sensitivity, inadequate inclusion in healthcare research, and lack of data and limited collection methods, among others. Further, as the provision of funding and resources hinge on need, as demonstrated through data, these assets, too, are withheld.
    48. The risk of HIV among Hawai'i's mahuwahine is exacerbated by all these obstacles and barriers, related in part to conventional understandings of identity—whether around race, ethnicity, gender or sexual orientation. This continued reliance on a standardised biomedical and western set of classifications, inattentive to the particularities of culture and of place, is one example of the many ways that local transgenders remain excluded from surveillance data or research efforts. As a result, it is difficult to develop responsive prevention or policy measures. Further, the continued absence of meaningful data fosters continued marginalisation, at the same time, suppressing opportunity and reinforcing the linkage between transgenders and social deviancy, irresponsibility and disease.
    49. Because of the predominance of biomedicine, the primary means of addressing the spread of HIV infection has been one of changing the behaviours that lead to exposure, with far less attention paid to the social conditions that also increase the possibility of infection. Similar to the matter of microaggressions, the exclusion of transgenders is neither innocent nor inconsequential.[92] In fact, the absence of data, itself, given its associated harms, may be argued to be a factor increasing vulnerability.
    50. While according to surveillance data, the incidence of HIV among mahuwahine appears to be low, these data sets continue to rely on conventional classifications with which mahuwahine may not identify. If, however, HIV prevalence among mahuwahine is low, as these data suggest, then it would be useful to recognize and identify the strengths of Hawai'i's transgender community that may be acting as protective factors—strengths which likely already play, and could play an even greater, role in HIV prevention, care and support.


      [*] Thanks to Kathy Ferguson of UH Manoa's Political Science Dept. for reading an earlier version of this paper, and to Lana S. Ka'opua of UH Manoa's School of Social Work for her thoughts on the particular situation of Hawai'i's Native Hawaiians, relative to HIV/AIDS. Thanks also to Ashliana Hawelu, Executive Director of Kulia Na Mamo, for allowing me to work on the minority health project; and to the Life Foundation and the state Dept. of Health, both in Honolulu, which assisted Kulia in its HIV (and hepatitis) prevention efforts. It was the tension between responsiveness to the target population of mahuwahine and responsibility to the (federal) funder that served as the impetus for this writing.

      [1] I use the term 'transgender' for its consistency with national and international usage, especially in health publications, despite its lack of fit and privileging of dominant understandings.

      [2] L. Ellingson and C. Odo, 'HIV risk behaviors among Mahuwahine (Native Hawaiian transgender women),' in AIDS Education and Prevention, vol. 20, no. 6 (2008): 558–69, p. 558.

      [3] C. Odo and A. Hawelu, 'Eo na mahu o Hawai'i: The extraordinary health needs of Hawai'i's mahu,' in Pacific Health Dialog, vol. 8, no. 2 (2001): 327–34.

      [4] Odo and Hawelu. 'Eo na mahu o Hawai'i: The extraordinary health needs of Hawai'i's mahu.'

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