Race and HIV Stigma in Puerto Rico
Upon asking a young woman living with HIV to describe HIV stigma and discrimination, she responded, “It is a person that is not worth anything, that is not worth anything, is a useless person… you are sick and you can infect many people… this [disease] is not like what people think.” Health does not exist within a vacuum but rather is influenced by a number of external factors, many of which extend from social environment. Disease-related stigma promotes health inequality by restricting access to resources to those who are marginalized in the greater society. HIV stigma combines the fear of the spread of contagion with stigmatized social conditions such as poverty, intravenous drug use and sexuality. HIV infection becomes the embodiment of the marginalized status, thus adding the weight of rejection to the burden of living with a chronic illness.
In examining the intersection of HIV stigma and social stigma, I sought to uncover sub-groups within the population of people living with HIV whose particular experience of marginalization through HIV stigma still might be unheard. Color prejudice, a social force that pervades the entire Caribbean including Puerto Rico, is a form of stigma is that widely visible yet often unspoken. In my research study, I sought to give a voice to the experience of color prejudice and HIV stigma and question if these two experiences might be linked. The objective was to assess whether there is a difference in HIV related stigma and discrimination faced by darker-skinned people in Puerto Rico living with HIV compared to their lighter-skinned counterparts. Given the fact that stigma has the potential to negatively affect adherence to antiretroviral medications, mental health and clinical outcomes, it is important to highlight the ways in which stigma impacts the lives people living with HIV.
In August 2007 I collected qualitative data using semi-structured interviews in a sample of 30 people living with HIV. A convenience sample of people living with HIV was recruited in the CoNCRA community center in San Juan, Puerto Rico. All participants were residents of Puerto Rico over age 21 and of varying ages and skin colors. In the interview, participants were asked about racial discrimination, family racial composition, and the stereotypes and challenges of people living with HIV.
In the interviews, many participants described the severity of HIV discrimination. Discrimination is most disturbing when it occurs within health care settings. HIV discrimination in health care settings results in unnecessary fear of the spread of infection. For example, a few participants remarked that health care professionals often use unnecessary precautions when undergoing physical exams and procedures with minimal risk of contact with blood or fluids: “When you go to the hospital they [health care providers] put on masks unnecessarily…and they put on 80 gloves and 80 things.” While the health care providers in that situation probably did not realize that the patient recognized that the precautions were unnecessary, nevertheless they sent a message of discomfort with patients with HIV.
More surprising than wearing extra masks and gloves is the fact that some health care providers have denied care to patients because of their HIV status. One participant described an incident which she was denied care while experiencing a medical emergency:
One time I had a gynecologist who did not want to take care of me because in that moment I was bleeding. I was hemorrhaging… She could not help me because I was HIV positive… I have a hemorrhage, how are you not going to see me… I needed for it to stop because I was weak [from the bleeding] and she told me that she could not see me…
Denying care to anyone because of their HIV status is unjust and unethical. After facing such treatment, one can imagine that many people living with HIV might be less willing to seek medical care in fear that they may be rejected or denied care again. While there are certain clinics and hospitals that specialize in HIV care, if the clinic is closed weekends and evenings or if the clinic is not within close proximity to an individual’s home, he or she may wait until the condition increases in severity before seeking care. This distrust of the medical community provides an even larger barrier to access to care for an already vulnerable population.
While none of the participants stated that HIV was more common in people with darker skin color, many participants of all colors noted that Puerto Ricans of darker skin color living with HIV faced a disproportionate amount of challenges that potentially impact their health. A few participants referred to those having both HIV infection and dark skin color as recipients of “double discrimination” in which their degree of marginalization would be magnified. One participant describes the discrimination faced by his wife:
My wife is a person of color… and I noted that in hospitals where she went to be seen… discrimination against her for being a person of color… I encountered this problem many times, many times… Like they say…she has AIDS, look at that man with that dark-skinned woman, you know…
While the frequency with which incidents like the one described by this man occur is not known, this anecdote illustrates the ways in which race and HIV stigma can multiply the degree of discrimination faced by people of color living with HIV with obvious negative health consequences. As many participants revealed their own experiences with stigma due to HIV infection, intravenous drug use, color and sexuality, almost all echoed the severe emotional and physical effects of social marginalization and rejection.
Given the results of this pilot study, one can begin to speculate that a racial disparity in access to medical services and health outcomes may exist. HIV and color stigma profoundly impact the life an individual with real consequences in terms of their health and quality of life. The results of this study demonstrate the need for future research in racial and color disparities in health in Puerto Rico, in addition to adding the dimension of race and color to the literature on HIV stigma in Puerto Rico and the Caribbean. While many have used the mixed-race character of much of the Caribbean and Latin America as an excuse to not attempt to study to effect of race on health in this region, I argue that this silence is what allows inequality to thrive. We must unravel the various systems of health inequality within nations before we achieve health equity across nations.
Melissa Burroughs is a fourth year student at Harvard Medical School. Melissa studied anthropology and human biology at Emory University where she received a BS in 2004. While at Emory, she did research on mixed-race identity in Gulf Coast Creoles. Melissa plans to pursue a career in cardiology and global health.