Latinos Living With HIV/AIDS in NYC
A question: Which U.S. city has more Latinos living with AIDS? Los Angeles, New York City, Miami, or San Juan?
New York City is the troubling answer to the question above. But even more troubling is that New York City is home to more Latinos with diagnosed AIDS than all those other cities combined, even though Los Angeles is home to the nation's largest Mexican-American community, Miami is home to the most Cuban-Americans, and San Juan is the capital of Puerto Rico. In fact, New York City has 7% of the U.S. Latino population but accounts for more than 25% of all Latino AIDS cases, and 35% of cases among Latina women.
My first step was trying to understand what psychological factors might be associated with HIV infection among Latinos in general, and in New York City in particular. According to Dr. Robert Remien, a clinical psychologist and research scientist at the HIV Center for Clinical and Behavioral Studies in New York City, "We have consistently seen in studies that depression, distress, low self-esteem, feeling disenfranchised, and feeling stigmatized are psychological and psychosocial factors often associated with transmission. People in minority populations, including Latinos, have often talked of discrimination in places where they live; ethnicity is frequently associated with lower socioeconomic status in this country.
"These populations living in urban 'inner-city' settings are often the most affected by HIV. The relatively high prevalence within neighborhoods in urban settings where many Latinos live is probably more about poverty and other associated factors than it is about Latino 'culture' itself," added Remien. "Also, there is the issue of life priorities. If people need to be more concerned about safety from violence, housing, parent-child situations, or poor health conditions, HIV protection can fall lower in their list of priorities."
Dr. Remien also noted that there are also issues of gender and power in two important sub-populations: women and men who have sex with men (MSM), whether gay-identified or not. "Some women and MSM may have less control over the circumstances in which they have sex, and also over whether or not that sex is protected. Likewise he added that immigration is often associated with poverty, race, and ethnicity. In a concrete and pragmatic way, immigrants may have less access to healthcare and resources. Less empowered or more disenfranchised people are part of more vulnerable populations. In Latino culture, such stigmatizing factors and conditions are often kept secret and not dealt with, which in the family context can make adolescents particularly vulnerable."
Starting with these insights, this article will provide a portrait of both individuals and organizations grappling with HIV within the community of New York City Latinos (a term used here to refer to individuals who have immigrated from and/or trace their ancestry to the Spanish-speaking countries of Latin America).
As I located potential interviewees, I encountered various degrees of willingness to speak. Puerto Rican and transgender individuals were particularly keen to recount their story. Possibly motivated by the safeguard of citizenship and eagerness to educate about their life's change, respectively. By contrast, heterosexual women's reluctance to relate their life story may be due to shame attached to the stigma of HIV infection in their community. Wishing to present a very diverse group of individuals, I made appointments with several Latinas from Central or South America, but none showed up. The following persons are part of a diverse group by gender, sexual orientation, age, level of education, family's country of origin and socioeconomic level. Names and some details about the lives of these individuals have been changed to maintain confidentiality and anonymity. I don't intend to imply these profiles represent sub-populations within the Latino community. What they do, however, is depict lives of some Latino New Yorkers living with HIV.
35 years old, transgender, single.
Country of Origin: U.S.-born and raised in Puerto Rico.
Languages: Proficient in English but more comfortable in her native Spanish for this interview.
Level of Education: Graduated from high school in New York City.
Seroconversion: Tested HIV positive in August 1988, after infection through sexual relations.
Family: Denise was raised by her single mother in Puerto Rico. At 10, she met her mostly absent father when he visited them. She moved to New York City, at 16, to lived with him and his wife. Although emotionally disconnected from them, she felt supported by her step-brothers and sisters.
Life Story: Once in New York City as a young man, Denise had her first "father-son contact." Feeling misunderstood by her father's wishes "that she act the straight way," she began wearing make-up and woman's clothes in her last year of high-school. Drug experimentation (marijuana, cocaine and crack) with peers lead her to underage prostitution after school. Before graduating in 1987, she moved to her aunt's home. While working the streets and after many requests from mobile units, she took the HIV test. Aware of her previous unsafe practices and not surprised by the positive result, she declined counseling. Though supportive of her gender transition, her aunt started demanding more money to cover expenses. Estranged from her whole family, at twenty she moved to a shelter for minors, Covenant House. After five years of numerous arrests for prostitution and minor theft charges, she was incarcerated twice for a total of more than three years; the last time charged with drug possession. In the spring of 1999, Denise returned to live in a city welfare hotel; she attended a day-program which referred her to a residential drug rehab program, where she finally achieved sobriety in August 2000.
Work: Denise is on disability but works for a community-based organization in various positions for a stipend. As a volunteer, she shares about her life's journey in various city day-programs.
Health: Less than two years ago she was diagnosed with superficial Kaposi's sarcoma. Today, her T-cells are just below 200 and her viral load is undetectable. She takes hormones but will not complete the transition to a fully female anatomy.
Sexual Practices: Before testing positive in 1988, as a sex worker, she ignored safer sex practices. Once infected, she used condoms according to customers' demands. If a man preferred not to wear a condom, she would not disclose her HIV status. When customers questioned her HIV status, she denied her seroconversion. "When you are involved in drugs, you only think of 'working' and getting the money," she confides reflectively.
The Future: Going back to school and obtaining a degree in recreation therapy.
46 years old, heterosexual, male, single.
Country of Origin: U.S.; born in New York City from Puerto Rican parents.
Languages: Bilingual, English and Spanish.
Level of Education: Graduate school. Antonio obtained an M.S.W. in New York City.
Seroconversion: Around 1990 or 1991, following IV drug use.
Family: The father of this "Nuyorican" abandoned his mother while she was expecting him; they later divorced. A sister with abandonment issues, three years his senior, "is pissed at the world" and is now divorced. Although Antonio and his mother are close, they lost contact with her ten years ago. In his late twenties, Antonio impregnated the mother of his only child. They married before their son's birth, divorcing two years later. Though his eighteen-year old son doesn't live with him, their relationship is great.
Life Story: This first generation Latino summarizes a history of IV drug use which started at age twelve: "I heard about HIV while running in and out of 'shooting galleries' (social spaces tolerating drug injection) but never imagined I would get it. I recall the norm was to draw water out of a 'McDonalds' cup and rinse the syringe into the 'Burger King' cup. We were too afraid to carry our own 'works' (drug paraphernalia) in case you got stopped by the police. I'm convinced if 'works' were legal I would not have gotten infected. 'Water under the bridge now.' At the time it was this weird and yet unknown illness. After several rehab attempts since age 16, I finally got sick and tired of being 'sick and tired.' My probation officer referred me to Samaritan Village residential Drug Rehab program, 18 years ago. The message they gave everyone there was: 'if you used IV drugs act as if you are infected.' The HIV test had just been approved. I followed that advice. I never, never had unprotected sex after that. My wife at the time was not infected, neither was my son."
Work: For two years, Antonio has worked full-time at a Bronx neighborhood clinic. As a social worker and certified alcohol and substance abuse counselor, he completes clinical assessments for his patients. Additionally, a part-time sales job makes his son's college tuition affordable.
Health: Protease inhibitors were pivotal in his life; Antonio felt better and had more hope for the future. Around six years ago he was hospitalized with flu-like symptoms, and was diagnosed with hepatitis C. Finally about three years ago, he started Interferon treatment. Unable to bear the psychological and physiological side effects, he stopped four months ago. Hep C co-infection has made life harder. He now must consult an HIV specialist and a liver specialist on a regular basis. Frustrated with interferon's harsh side effects and "inefficacy," he may explore Ayurvedic medicine and acupuncture to use in tandem with his allopathic treatment, with which he is as compliant as possible. Though not currently in psychotherapy, he attends Narcotics Anonymous meetings once or twice a week.
Sexual Practices: The Bronx native took the HIV test to inform his partner at the time -- and himself -- of his status. Hep C and its treatment side effects beleaguered him with depression, isolation and low libido, causing him "to shut down." As a result, he is not very sexually active.
The Future: Helping others at the clinic keeps him contented and motivated, "I want to save myself for a cure, live in the moment, take care of myself, learn how to love and how to receive love. That is what will keep me alive. I want to pay all my debts, live comfortably, go on vacation, see my son married with kids," he declares with confidence. When I remark on the hint of loneliness in his voice, he concludes "I want to find a companion who is candela, you know, hot and spicy."
28 years old, gay man in committed relationship.
Country of Origin: Born in Colombia.
Languages: Bilingual, but more comfortable speaking in Spanish for this interview.
Level of Education: Graduated from high school in Colombia.
Seroconversion: Tested positive in June 1996, but suspects being infected two years before through sexual relations.
Family: Juan is the youngest and only male of four siblings. Even when his parents divorced when he was five years old, he remembers their conflicts. He feels very connected and supported by his family, that is, mother and sisters. Maintains perfect communication with his mother who "means everything to him." Estranged from father (who was killed three years ago) since coming out at age 15, he regrets not connecting with him. His whole family is aware of his sexual orientation and HIV status.
Life Story: Juan's family was considered upper middle class in Colombia. Awareness of his homosexuality at an early age didn't trouble him, despite being stigmatized by peers for playing with girls. At 14, he would go out dancing in gay clubs. As an adolescent, he dressed and performed in "drag," maybe encouraged after playing female characters in his all-male school drama club. Performing resulted in alcohol and drug use, which in turn, led him to feel uninhibited and practice unsafe sex. "When meeting someone casually in the early '90s, safe sex was never discussed in my country" he shares "we knew about it, but rarely used condoms." At 16 he had his first relationship. Today, he maintains a four-year committed relationship with a Puerto Rican ten years his senior.
Work: Barely eighteen, Juan moved to America, seeking both a better work life and a freer place for gay men. He held cleaning jobs at department stores, malls, and fast food restaurants. Presently, he has a full-time job with all benefits despite his undocumented immigration status.
Health: Juan is treated at a hospital HIV program for immigrants. Though his T-cells fell to 100 two years ago due to poor drug adherence, he has never had an opportunistic infection or hospitalization. Juan feels his use of cocaine, depressed him and depleted his immune system. Through a modified treatment and avoidance of illicit substances, he is now adherent and his T-cells hover around 300.
Sexual Practices: Prior to his present relationship, Juan seldom practiced safe sex, in spite of his HIV status. Since his current partner is HIV-negative, however, they practice safe sex without anal intercourse. Juan would like to work as a case manager in any of the agencies that provide him services today.
55 years old, gay, male, single.
Country of Origin: Born in Mexico.
Languages: Bilingual, still, our chatting in Spanish for this interview suggests preference or comfort in his native tongue.
Level of Education: Graduated from college in Mexico.
Seroconversion: When his lover died of AIDS and he developed "thrush," he presumed that he had been infected through sexual relations. In the late eighties, his suspicion was confirmed by a T-cell count of 183.
Family: Rodrigo was born in the "typically loving and close" Mexican upper middle-class family. He was unconditionally supported by his parents, as were his three younger brothers. Although his sexual orientation was never openly discussed, his lovers were included in family functions. After his parents died, his strong relationship with his brothers and their wives allowed him to confide his HIV status. Members of his family all still live in Mexico, but visit sporadically.
Life Story: During high school, after puberty, he sexually experimented with male friends. Undisturbed by, or without questioning, his homosexuality, he continued "connecting" with men, devoid of the need to reveal his personal life to any family members. He attended a top-ranked college in Mexico City, majoring in marketing and advertising. There he was hired and employed by several transnational companies. His employers sponsored his Green Card after he was transferred to New York City in the early 1980s. After ten years of employment, he resigned due to HIV.
Work: Rodrigo has been on disability since the early 1990s. In spite of occasional financial struggle, he chooses a quiet life surviving on his disability income.
Health: Very stable with T-cells hovering around the 200 mark. Aside from one hospitalization in the late 1990s for an indeterminate fever, he hasn't had any opportunistic infections.
Sexual Practices: Rodrigo maintained committed relationships before and after his seroconversion. Recently, his partner of six years passed away. "Sex has always been an expression of love; for me, it is more important to have someone to love," he states. After his seroconversion, he practiced safe-sex during infrequent visits to sex clubs.
The Future: "I have learned to live in the present, so I don't have major plans for the future. My life in the next five years is hardly predictable, but I never expected to reach this age. Occasionally, I worry about finances, medication efficacy and other life changes." He concludes "I seek peace and choose to enjoy new experiences, while planning and trusting the future."
This article was provided by Body Positive. It is a part of the publication Body Positive.