The story of Ashena (pseudonym) falls outside of the book’s timeline but is important in showing the importance of women to the Asian American AIDS movement (Chapter 17). This excerpt explores the life of Ashena, including a failed marriage and a child’s death that led to her drug addiction and eventually, to her shock, HIV infection. AIDS activism pulled Ashena from her despair, and now she’s helping other women living with AIDS find their purpose.
Ashena grew up in the Philippines and moved to the U.S. in 1977 at the age of 20 with her husband and her toddler son. “We moved to North Dakota, of all places,” she said. Not too long after that, Ashena divorced her husband. In the small town where she lived, everyone knew about her marriage’s dissolution. She added, “And there were few Asian people there. I needed a place that I could move around and not be noticed.” She had befriended one Asian in North Dakota she knew, a Korean adoptee, a neighbor, who had moved to Los Angeles. This woman had told Ashena that if she ever needed to get out of town, she could come stay with her. So she came to Los Angeles in 1982 to find her and set up her new home. Without a job, she had to leave her son with his father in North Dakota.
Ashena eventually met another man, with whom she had two other children, a daughter and another son, who died of a crib death. She said, “He went to sleep and never woke up.” She still shook when she talked about this. “It took ten years for me to get his death certificate, because I thought it was my fault.” This tragic death plunged her into depression, then alcohol and drug use. It didn’t help that her neighbor was dealing cocaine. And it was in a rehab in Acton in 1997, when Ashena decided to take an HIV test. She had not known much about the virus at the time, except that Rock Hudson had died of AIDS and Magic Johnson had the virus. But the mobile van had made the test so accessible, and other residents were getting tested, too. So she thought, Why not?
A week after having her blood drawn, she went to get her result. When they told her that the lab had lost her blood specimen and she had to re-take the test, Ashena had this sense of omen. She knew that a sexual partner she used to use with was an intravenous drug user. Ashena had never used needles herself, and she had filed this away in the intervening week after she took the test for the first time. But the re-test made the risk of sexual transmission under the influence suddenly very real to her. She still remembered the exact date in March – because it was a day after her birthday – when she found out she was HIV-positive. “As soon as I walked out of that van, I thought everyone was just going to know that I was HIV-positive by just looking at me,” she recalled. “It was hard. So I went up to a podium one time [during group therapy] and told everybody. After that, there was a guy at the treatment facility, another resident, who told me, ‘Ashena, if you were not HIV-positive, I could really go for you.’ I don’t even like the guy, but it bothered me. I can’t handle rejection, face-to-face, but for some reason, I was okay telling a whole group of people.”
A counselor at the treatment facility, who was knowledgeable enough to have conducted an HIV 101 workshop for the residents, connected Ashena to HIV services, including a support group in Lancaster. The counselor even sat down with both Ashena and her daughter, who was about six at the time, and the daughter’s father when she disclosed her status to them. The daughter’s father was mostly supportive but asked Ashena not to reveal her status to anyone else. Ashena said that his “excuse” was that he didn’t want anyone to treat her differently. For her daughter, there had been an organization for children with parents who were HIV-positive. Ashena signed her daughter up with all their camp activities so she could be with other children with that unique experience. In some way, having a HIV-positive parent became so normalized that one time, when one of Ashena daughter’s classmates talked about his parent being sick, her daughter blurted out, much to the chagrin of her ex, “Oh, my mom is sick, too. She has HIV.” Later, when Ashena became active as a public speaker about her experience with HIV, she would take her daughter to many of the engagements.
There was at least one person, however, that Ashena was supposed to tell, and that was the man from whom she suspected she contracted the virus. Partner notification was supposed to encourage the partner to get tested and be more careful about the risky behavior they engage with other people. But when she arrived at his house, she found him holding a pipe. After taking a hit, he handed the pipe to Ashena. She fled.
Ashena tried to go back to some sense of normalcy, but for a straight woman, dating was really challenging. Some reacted with violent words. A female friend Ashena had been staying with slapped her when Ashena told her, and Ashena had to leave her place immediately. All these negative reinforcements amplified her fear of rejection. After nine months of sobriety, depression made a comeback and Ashena went back to drinking and using. She said, “I told myself that I was going to die anyway. So I might as well do what I wanted to do. But I wasn’t dying. I wasn’t dying fast enough, and I can’t kill myself. I was just hurting.” Once she realized this, she started going to meetings again and eventually to Tarzana Treatment Center to address her addiction. Later she found AIDS Project Los Angeles. Ashena credited her counselor there for helping her address basic needs like housing, medication support, and even dental services, though, limited to those one-on-one, individual-level interventions, she didn’t find community there. She attended a support group In Hollywood sponsored by Women Alive, where she met a lot of heterosexual women who were HIV-positive.
It wasn’t until she met up with staff from APAIT did she feel a sense of hope and purpose. “When I went into APAIT,” Ashena said, as she began to choke up in tears, “I felt like a load of heavy baggage just being lifted off me. I know for sure I wasn’t alone then, that there were other API people who are HIV-positive.” She met Lianne Urada, who was a staff counselor at the time. Ashena recalled, “She made me feel special and that I’m okay and safe. She gave me a tour of the place.” What Ashena had found and needed from APAIT was not their services – after all, she was getting that from other AIDS service organization – but a sense of community. She went from surviving to thriving. And sensing this, Dean and others pegged her to be a community advocate, inviting her to speak to different audiences about her experience as an API woman living with HIV. Lacking childcare, Ashena often brought her daughter with her to these speaking engagements.
By 2000, Dean nominated Ashena to represent the API community at the County’s AIDS commission. In a span of two to three years, Ashena went from a helpless and hopeless person who had just discovered she was HIV-positive to an avid advocate. Now, even if she has no official role at an event, she’ make public comments about APIs and/or women with AIDS, if that has not been discussed by the speakers, and “the stigma and all that crap that we have to deal with.” She often shared the story about a friend, a Filipino man with HIV, who, to this day, would voluntarily use paper plates at family dinners. She was upset that his family allowed him to do that, but more so because, according to Ashena, “he said it was his choice. But why would you choose that? Why would you separate from your family? He said it was no big deal. But it is a big deal. In order to accept yourself, you have to accept yourself with your family. I think that sucks.” The internalized AIDS phobia is so deep that it continues to fuel her advocacy on behalf of people who are not ready to speak up for themselves yet.
Her activism was not completely a selfless act. Ashena said it had saved her from her depression and addiction. She especially remembered going with Dean to Washington, D.C. in 1999 to lobby for more federal AIDS funding to Los Angeles. “At that time, a lot of the funding was going to San Francisco and New York. LA wasn’t getting that much attention. We had a ‘State of Emergency’ rally and I talked to senators and congresspeople. It made me feel like I was doing something. I was no longer feeling sorry for myself or wallowing in my depression. I know what my purpose is. I still get depressed easily, but now I don’t let it control me.” She continues to volunteer for APAIT and other AIDS service organizations because, she said, she wants to give back to others what she’s received herself. She’s been running HIV support groups for women, especially women of color, and more recently, added one for older adults with HIV, too.
I asked Ashena to reflect on her journey with HIV. Now, with twenty years of sobriety, she could say she had come to look at the virus as a “blessing.” It gave her “purpose,” and without it, she could still be under the throes of alcohol and drug addiction. It helped her be a better parent, work harder as a parent, and she thought her daughter, now in her late twenties, was better for it, not that it hadn’t been hard on her. They are still close. Her daughter tried to convince Ashena to get her first tattoo. And Ashena, still afraid of needles (the reason why she was never an intravenous drug user) and at the age of 61, complied. She thought she still had plenty of life to live. “I plan to live until 90. That’s 29 more years. There’s still time to do something crazy.” And she showed me the part of her body where she was marked with a hummingbird. “I’m starting to live again.”
The book (Chapter 18) explores ethnic inequities in how AIDS resources are distributed in the Asian American community, especially for Filipino American population that had been hit by the epidemic harder than other ethnic groups. In the late 1990s, Filipino American AIDS activists began to also organize outside of the panethnic umbrella. This except discusses the process Napoleon Lustre and others have gone through to establish a Filipino American-specific outreach program that successfully garnered its discrete funding from the Los Angeles County.
Ethnic-specific data about HIV cases and incidence rate were not available at the beginning of the epidemic, when even the panethnic label of Asian or Pacific Islander was subsumed under the “Other” category. It was only after so much advocacy, both locally and nationally, that these data were disaggregated. Once that happened, the intra-racial disparity became apparent right away. Filipinos always accounted for a large chunk of HIV cases among API groups in Los Angeles. In 1993, 397 new cases were reported among API populations. Of those, 117 were Filipino, or almost 30% of all API new cases. That didn’t consider other factors, like racial misidentification, refusal to state one’s ethnicity, or delay in getting tested, that would swell that number. Japanese came in a distant second, at 55 cases. (Proportionally, one ethnic group was more likely to be tested positive than Filipinos. The Thai community in Los Angeles had an incidence rate of 110.17, more than doubled that of the Filipino community [53.26], though the Thai population was much smaller and only accounted for 21 new cases that year.)
Some research studies have tried to explain the different risk factors that might have contributed to the disproportionate impact of AIDS on the Filipino community, anything from influence of Catholicism, gender role norms, Spanish and U.S. colonization, and relatively lower socioeconomic status. None could be as candidly blunt as Napoleon. Like many API AIDS activists, he had often asked himself, “What is this thing that makes us [Filipinos] welcome the virus? So hospitable we are!” He concluded: “It came down to a few reasons. One is we fuck more. We just do. We fuck more people, and we fuck more kinds of people. Because we could speak English well, we’re acculturated, we’re more Westernized – whatever, whatever – we just blend in more. We hang out with other people of color more. We cross into other ethnic groups. We’re lubricated.”
The Filipino AIDS activists had more skin in the game, so to speak. The promotion of three East Asians to management positions, then, contributed to the strain in the organization, even if ethnicity did not play a role in Dean’s decision. Beyond the make-up of the leadership, there was also criticism whether APAIT’s services were strategically deployed to the communities who needed it most. Napoleon was one of the louder voices at APAIT, arguing that “it was a disservice to the Filipino community when we had the numbers, but we weren’t getting proportionally the services.”
In the mid-nineties, he and other Filipino American leaders began to organize outside of APAIT. They partnered with Search to Involve Pilipino Americans (SIPA) and advocated for HIV outreach funding specifically in the Filipino community. They held a strategy session at the Chinatown Annex, the headquarters for the Asian Pacific Policy and Planning Council at the time. The meeting objective was to strategize a plan to approach the AIDS Commission for funding. Napoleon remembered that the room was packed with community leaders, including some executive directors. The audience was overwhelmingly Filipino, but Napoleon had the suspicion that not everyone was bought into the vision. He said, “There were some people that I thought were curious as to how this was going to play out, maybe even a little threatened by it. We didn’t give a fuck. We needed it to happen in the Filipino community immediately and at a higher volume. It was a desperate time. We did not fear the charge of duplication of services because we thought our numbers warrant to get as many services from as many places as we can. That was our argument.” Napoleon remembered that leaders, like Ric Parish, who by this time had moved on from APAIT, leveraged their relationships with policymakers on the Commission to support the initiative. In 1996, the AIDS Commission gave SIPA a three-year funding allocation for a HIV outreach project targeting Filipino MSM. Napoleon helped launch the project in the first three months and hired two part-time outreach workers, Tala Oliver Mateo and Alberto “Sonny” Vajrabukka. He also found an office in Historic Filipinotown, at the corner of Virgil and Beverly, not too far from SIPA. Napoleon said, “We wanted to be physically separate from the SIPA office because it was going to be an issue for MSM to be so visible in the community, if they were going to look for HIV services. We relocated to an office somewhere more secluded. Shortly after they set up offices, Napoleon was offered a job at Being Alive, an organization for and by people with HIV. He left the Filipino HIV outreach project because he really wanted to work directly with people with HIV. Tala and Alberto also moved on at the end of the three-year allocation. But at least in that duration, Los Angeles had an outreach project that specifically served the most impacted API ethnic community.