Esther smiled slyly. “But you became an activist there. And you’re pretty damn good at it. You showed those boys.”
Esther put her arm through Issy’s, and Issy smiled in spite of herself. Esther was right. The past three years had been unexpectedly exhilarating. Had Issy ever thought she would stand up at a microphone in Washington Square Park and say to a crowd of a thousand people, “I am a New York City Latina living with HIV/AIDS and I am a citizen, and I want my rights!” And that everyone would cheer wildly for her and that she’d be in the papers and on the local news? Had she thought that, when her father saw her on the news and called her, furious, demanding that she stop shaming him, she’d find the courage amid her hurt to tell him to go to hell? Did she think she’d be part of committees going down to Washington, D.C., to tell her story to government officials and ask that funding be created specifically for women with AIDS?
Is this really happening? she’d thought while sitting in an office in the National Institutes of Health across from a dough-faced, middle-aged white Republican deputy from the South who oversaw a committee that continually refused to earmark more money for AIDS research and treatment. She’d made this visit with two policy people from GMHC, which the movement scorned as too accommodationist, but GMHC had told her she was one of the few HIV-positive Latinas in New York City who could talk about these issues fluently with congressional staffers and they desperately needed her to come along, so how could she say no? And now here she was sitting across from this man, who seemed to be listening to her, his doughy hands folded in his lap and his eyes narrowed in concentration and trained relentlessly on her, but his knee bobbing, bobbing, while she looked him in the eye and explained cervical dysplasia to him.
When she finished, he raised his hands, sighed, and said, “I’m in awe of the work you’re doing. I know I could get in trouble for saying this in some quarters, but I think you’re doing the Lord’s work.” He winked at her mischievously.
This made Issy blush uncomfortably. “Thank you,” she said.
“But you do realize we’re just coming out of a war and we’re in a recession and we already passed the Ryan White CARE Act to help American AIDS victims.”
Issy felt her heart rate spike, but she took a breath and thought of her movement friends back in New York. “Excuse me, we’re not victims,” she said bluntly. “We’re people living with HIV/AIDS and we need more research and funding — the women, especially.”
The deputy nodded vigorously. “I hear that,” he said. “I hear that. I see so many different constituencies and I don’t always get my terminology right. I apologize. I’m just saying we’re looking at a very tight fiscal picture right now, we’re in an election year, and we can’t necessarily accommodate every special-interest group in the country, because there are many. Your group’s actually received a lot of funding in the past decade.”
Now Issy’s heart was racing. “My group! We’re not a group. We’re people, we’re Americans. And we haven’t received good funding. Your president didn’t even say the word AIDS until 1987.” By now she’d repeated this angry mantra — that more than twenty thousand people had died before he uttered the word — several times, but it still shocked and enraged her as much as when she’d first learned it, making her realize just how disposable she was to her own country.
The deputy gently raised a palm to stop her. “Now, that was Reagan. Things have been very different under President Bush. He signed Ryan White. Please be fair.”
“Sir,” said the crew-cutted, young gay male staffer from GMHC who’d accompanied her on the trip, “I think Ms. Mendes would like to talk to you specifically about increasing funding for research on women with HIV/AIDS.”
“That’s right,” Issy said, embarrassed that the GMHC staffer had to refocus her. “You guys need a special program to make sure that the drugs are being tested on women.”
The deputy turned back to her and smiled in a way that felt, to Issy, both kind and fatigued. “We need a lot of special programs, Ms. Mendes. And we’re in a recession.”
Issy shook her head, enraged. “You know,” she said, slowing into a deliberate tone, steeling herself. “I wish you could have my vagina for one day so you knew what pelvic inflammatory disorder was like. I wish you could have the pain, and the nasty discharge, and the smell. The smell! And then you’d know that that’s a symptom of AIDS and that you couldn’t even get disability benefits from it because it’s a woman’s symptom and the government doesn’t consider it a real symptom. And then I think you’d think different about how important this is.”
Issy held his stare, which was a mask of studied concern. “Ms. Mendes, I’m truly sorry to hear about your health troubles. And”—here he turned to his young blond female staffer, so impassive in her headband, beige suit, and sensible heels—“we will bring your concerns into committee. Isn’t that right, Shonna?”
“It’s in the log!” the young woman said with Teflon brightness, the same drawl and the same faint edge of impatience as her boss.
Everyone was quiet for a moment. Issy had encountered this pause already today in prior visits — that unbearable moment when she’d spilled her heart out, when desperation and need had been expressed, when its expression had been politely acknowledged and documented and now there was no more to say. Other supplicants, with their own dread issues, were queued up in the reception area behind her. It was all so — Issy struggled for the words in her head — it was like lining up for confession, waiting for the priest to tell you something mind-blowing that would make your whole life right, except he never did. He just told you to go off and say some old prayers.
“I didn’t mean to gross you out,” she blurted out. “I just want you to understand.”
The deputy nodded indulgently. “You have been heard,” he said. “Very much heard.”
Outside, in the hallway, the GMHC staffer grabbed her arm. “Issy, you were amazing! That’s exactly what he needed to hear.”
“But he’s right,” she was surprised to hear herself saying, with a realization that was both a strange relief and also cause for a deeper despair. “We think this is everything, but to the government it’s just one out of a million things. It’s a grain of sand.”
“It’s more than just a grain of sand,” insisted the young man from GMHC.
Remarkably, though, they’d won. Later that year, 1991, the government had earmarked money to start a very large national study of women with HIV, tracking problems and issues that were specific to women. Even though the study would not formally start for another two years, the mere fact that the feds had funded it was a triumph. Wonderfully for Issy, many people in the movement pointed to her as someone who’d been brave enough to put her own story out there in D.C. to make this happen, and she’d received a shrieking ovation at the weekly meeting, everyone chanting “Issy! Issy!” Hector and Esther, standing on either side of her, held her arms aloft as though she were Rocky Balboa. She’d beamed with elation and felt a sense of belonging and acceptance she’d never known. There was more work to do — the government still didn’t include women’s problems in its official definition of AIDS — but they’d scored a victory. She’d scored a victory.