The New Lost Generation

Laura Jimenez with her son Mart in 1993

In January 1991, a few days after her fortieth birthday, Laura Jimenez came home from her job at a greeting card company to the Bronx projects where she'd lived for almost 20 years. Entering her eighthfloor apartment, she went to the kitchen window, slid the window open, arid, using a screwdriver, began removing the black metal child guard. The task took her four hours. Then she climbed out on the ledge and sat, pondering whether or not to jump.

Two months earlier, Jimenez had gone to the hospital trying to find out what was wrong with her body. She'd been waking in the middle of the night covered with sweat. Then she started getting her period two or three times a month, with abnormal amounts of blood. Like many mothers, she gave her own health problems low priority; besides, she thought, it was probably just the first signs of menopause. But when she finally had herself checked, she discovered that she'd contracted HIM the virus that leads to AIDS. She'd never known anyone else who had it or at least who admitted having it. "It was the furthest thing from my mind," Jimenez says today. "I never used drugs in my life, I wasn't gay, so I figured it couldnt touch me." Because the disease had first taken hold among a gay male population, the warning signs peculiar to women like Jimenez's abnormal bleeding, as well as others like cervical cancer, repeated vaginal yeast infections, and infections of the Fallopian tubes were only just being identified. But Jimenez's T cell count a reliable indicator of the virus in both sexes was 190 (normal is 600 to 1,400), which meant, the doctors told her, that she'd probably been infected for six years. She cried, she screamed, and then, she says, "I thought about my family." Jimenez, a cute, compact woman who first married at sixteen, had devoted her life to her three kids: Phillip and Lisa, now in their twenties with kids of their own (Jimenez had left their abusive father when Lisa was three days old), and Matt, today a sunny faced ten year old.

After getting counseling and medication for herself, she took Matt, then eight, to be tested. Much to Jimenez's relief, Matt tested negative. (All babies born to HIV positive mothers initially test positive for antibodies to the virus, but by eighteen months, two thirds become HIV negative, having lost their mothers' antibodies.) After talking with a psychiatrist, she decided not to disclose her illness to the boy , she was unsure how he would handle the weighty information and wanted to protect him from the fears, prejudices, and ignorance of the outside world. Unfortunately, those problems didn't stop at her front door. Her second husband, the only father Mart knew, had also gone for testing and didn't have the virus. Though Jimenez would later trace her infection to the man she'd dated for three years before meeting Mates father, her husband suspected her of cheating on him. He began calling her whore and slut and refusing to have sex with her; he told her (wrongly) that she would transmit the disease to him on their bed sheets. He started to drink heavily, and their battles grew fierce. When the school psychiatrist reported that Mart had been getting in fights at school, Jimenez kicked her husband out. "I felt so alone," she says. And a few days later, she found herself on the window ledge. The AZT she'd been taking to boost her decreasing immune cell count was giving her diarrhea and muscle spasms and exacerbating her depression. She stared out at the bridges for a long time, feeling worthless, dirty, no good, and sorry for herself. She thought, My life is gone. Then she thought about Mart. "I was going to be cheating him out of his mother, out of a life," she says today. "I realized, maybe I could live with it."

It took time, but Jimenez picked herself up, joined support groups, found a boyfriend, stabilized her T cell count, became a speaker for the People with AIDS Coalition, and helped start a multiservice center for women with HIV in East Harlem called Iris House, in memory of an ex prostitute activist who'd died of AIDS. But Jimenez started hearing and seeing horror stories: When a mother she'd met who had AIDS became too sick to care for her kids, the state took them away. Another young mother died too soon to make any arrangements for the care of her children; they ended up with their grandparents, but three months later the daughter, thirteen, hanged herself, leaving a note saying that she wanted to be with her mother. "I've seen all this," Ji'menez says, "and I can't do that to Mart." She knows that even though she's refastened the safety bars to the kitchen window as securely as she can, it's impossible to guard against her son becoming a sad new statistic an AIDS orphan.

Epidemics have always created orphans: Tuberculosis, influenza, each left children behind. But over the last century, as public health improved and family size decreased, fewer children have needed foster care or institutionalization. In 1920 there were an estimated 750,000 orphans in America; by 1953 the number had dropped to 66,000. Although the initial impact of AIDS in the United States was not on families, the future could have been foretold by looking at Africa, where transmission has always been primarily heterosexual. In Uganda, for instance, by 1991 an estimated 600,000 to 1.2 million children had been orphaned by the disease. In 1989 the New York City AIDS Task Force began meeting to coordinate ways to contain the spreading epidemic. Everyone had noticed the increasing number of cases among women between fifteen and 44. (As of 1993 women constituted more than 10 percent of the nation's reported cases and 16 percent in New York City.) Someone commented, "We'll probably have a lot of orphans, too." Most women infected with HIV were their children's sole parent; if the fathers weren't dead or dying themselves, they were absent due to drugs, crime, or divorce. America was witnessing the creation of a whole new lost generation: the uninfected orphans of the storm called AIDS. There was no system in place to deal with the myriad needs of these children. Infected adults and children could (at least theoretically) seek out and qualify for health care, mental health treatment, public assistance, and other social services. Once foster parents conquered fears of infection, they might even prefer a child with HIV, whose benefits can be up to $1,280 a month, compared with a healthy child's $400. Uninfected children, by contrast, were usually isolated and increasingly neglected at home as their moms (and perhaps siblings) grew sicker. In response, Carol Levine, then executive director of the Citizens Commission on AIDS, founded the Orphan Project and commissioned David Michaels, an associate professor of epidemiology at the City University of New York Medical School, to scientifically estimate the number of youths infected. Their findings were alarming: By the end of 1992, 24,000 American children and adolescents 59 percent black, 23 percent Hispanic, 18 percent white had already been orphaned by AIDS. By the end of this decade that figure will exceed 82,000.

A quarter of the infected children and nearly half of the orphaned children live in New York City, where AIDS has become the number one cause of death of women of childbearing age. These numbers don't begin to reveal the hard truths of the lives affected. Consider the case of seven year old Noel. He and his brother, Joel, one year older, were both born HIV positive and abandoned in New York City's Metropolitan Hospital. In 1988, when Noel was ten months old, he and his brother were taken in by a gay male couple, John Glover and Louis Arce, who had been together for more than a dozen years and who would soon begin the adoption process for another HIV positive three year old AIDS orphan named Angel. Noel is no longer HIV positive; Joel still is. The boys' mother died; Glover suddenly got sick and died, and Arce tested positive, forcing him to make arrangements for his brother and sister in law to take whichever children survive him. So by the time Noel is an adult, AIDS will most likely have taken his mother (and probably father, whereabouts unknown), his adoptive parents, his adoptive brother, and his only biological brother. In his therapy, Noel has taken to drawing pictures of gravestones and playing with a Barbie doll, who he says is "mean and awful." Right after his mother's funeral, which he didn't attend, he described it in detail: He said she was wearing a lavender dress in a beautiful coffin covered with sparkles.

Jennifer Havens, M.D., a child psychiatrist at New York City's Columbia Presbyterian Medical Center, in 1991 set up a Special Needs Clinic (see page 39) there for disintegrating families like Noel's. "In many of these families, there is already chaos before the death," says Havens. "They're in trouble; HIV just pushed them one step further." She and her staff treat uninfected teenagers who have suddenly been forced into the role of parent; kids who are HIV positive; families who are trying to stay together after the death of a parent; children who are coping with the loss of a sibling to HIV Their job is complicated by the stigma attached to AIDS. "Kids are told not to tell anyone," says Havens, "so often they don't even talk to us at first." In New York City, pilot programs have been launched to get help for families before parents die. The Informed School Project aims to bend the rules of confidentiality by letting certain teachers, principals, and counselors know about a parent's or a child's illness in order to provide more support for the child. And the Child Welfare Administration (CWA), which previously moved children into foster care only when parents were abusive, neglectful, or deceased and gave parents no say in their children's futures started an early Permanency Planning Project. Dying parents can now meet with and approve of foster parents and, under the provisions of a New York State law passed in July 1992, share guardianship without giving up all parental sights. (In most states, terminally ill parents have only two options: to write a will and hope that after they die, the family court will approve of their choice, or to assign guardianship before death, giving up all rights to the child.) But none of these programs comes close to meeting the need. CWA commissioner Robert Little warns, "If we said, 'Come one, come all,' we'd be overwhelmed." "Our study tells us how many of these kids there will be," says Carol Levine. "The next question is, What happens to them? Our anecdotal evidence is that they go to their grandmother's or aunt's or into a previous foster care home, but there hasn't been any long term study to see if those situations can be sustained. And my guess is that a lot of older teens, who are harder to place, end up on the streets, in shelters, and in trouble. So the real answer is, we don't know."

Both Raymond, four, and his half sister Money, five, have ended up in the bustling four bedroom apartment of Rays grandmother Renell Grant, in Bronx projects near Yankee Stadium. Also here is Phillip, a twelve year old orphan with AIDS, and so were Damein and Rasheen, foster kids who both died of AIDS within a few months of each other in 1990, at ages six and nine. Grant, a five foot tall 43 year old who radiates solidty, herself went into foster care at age seven. At seventeen she married a much older man and had her first two of four children. She later fought for and was awarded custody of her five younger siblings. "I have a heart for children," she says, and it's clear from the way her brood takes to and obeys her that she's a natural. In 1985, through her former foster agency, Grant took in Phillip, then five, who'd been living in a hospital since he was born. Nobody wanted Phillip; HIV positive, he already had respiratory problems and sinusitis. "I had to carry him out, because he was terrified," recalls Grant. "He'd never had that warm, nurturing setting." After Damein and Rasheen arrived, the crack dealers in the building found out about Grants AIDS babies and repeatedly hassled and threatened her. "In the beginning," she says, "even my own kids didn't understand." Then on September 3, 1988, her natural and adopted families converged. She got a call from Columbia Presbyterian hospital: Her son's ex girlfriend, a drug user, was giving birth to his baby, and she'd given the doctors Grant's phone number. (The son, who'd fallen in with the building's drug crowd, was in jail at the time for dealing.) Grant went to the delivery room: "The woman was stoned out of her mind," she says. Grant witnessed her grandson Raymond being born and testing positive for cocaine and HIV Child Welfare was notified. The police told Grant that the mother had abandoned a one yearold daughter (fathered by a different man) back in her apartment, a crack den. She rushed over. "It was a pigsty, people were smoking in the darkall you could see was the flames." The girl, Money, was wearing Pampers and a rag. Malnourished and autistic, she also had an inner ear infection, a rash, and showed signs of abuse. Grant took Money and Raymond in as foster kids; both of them are now HIV negative. She shuttles them to doctors' appointments and family counseling at the Rose Kennedy Center in the Bronx and to Columbia Presbyterian's Special Needs Clinic.

When I visit, Grant, who's wearing a T shirt from the AIDS Quilt project, is also baby sitting four grandchildren, all under the age of five. The building's hallways are filled with anarchic graffiti, but her apartment, while toy cluttered, is clean and bright There's a color TV in every bedroom. The kids sit, wearing long johns in various colors, watching Philip play Super Nintendo. As soon as they see my notepad, they grab my pen and make me do tracings of their tiny hands. Money, whose autism has rendered her hyperactive and nonverbal, runs back and forth in the limited space, yelling and staring at herself in mirrors. Raymond sits quietly and makes drawings; when Whitney Houston's "I Will Always Love You" comes on the radio, he absently lip syncs the whole thing. "We don't know where their mother is," Grant says. "She's probably dead." Grant wants to legally adopt Money, but hopes that her son, now out of jail, working in construction, and living with a woman and a new child, may soon have a stable enough existence to take Raymond in. Phillip wanders in and out of the room. He's small for his age and has been getting into fights at school. Grant had disclosed his HIV status only to the assistant principal, but when Philip recently bit another child who'd been choking him, school officials panicked, and Phiffip's illness became common knowledge. Now Grant needs to find him another school. Asked what he remembers about his adoptive brother Rasheen's death, Philip says, "The nurse called, we told Mommy. We all went to the funeral. The next fimeral, I didn't go. I was scared, I got bad dreams." Grant adds, "He drew pictures ofhimself in a coffin, covered himself with black, went to sleep with a toy pistol to guard himself."

The strain of AIDS on families is perhaps most readily apparent in teenagers like Eugene, eighteen, and Mercury, seventeen. Their mother, Vivian, a woman who'd never used drugs, found out she had the virus in 1988, when her two year old son Sha Ron tested positive during a regular checkup. A daughter born later that year died before her first birthday. When I spoke with Vivian on the phone, Sha Ron, six, was bedridden, his T cell count down to 36. Eugene and Mercury are both healthy. Vivian says she told them about her illness two years ago; Mercury wanted to know, "Is it contagious?" Eugene, she says, "didn't take it that bad." But their grades have fallen below average at eighteen, Eugene is still a junior in high school and they get into a lot of fights. Vivian grants me permission to interview her sons. I phone Mercury, who tells me, "I'm trying to watch her, make sure she eats right, takes care of herself" acting like the parent. Eugene seems less understanding. "The doctor says if she dies it wouldn't be for like three or four years," he says. "My mom don't seem sick to me. She don't do much, the way I see it. She makes me walk her dog, and if I don't do it, she punishes me. Somehow I don't believe her, because she still acts the way she usually acts." I ask what he knows about his sister's death: "She couldn't breathe the air around our building where we used to live." I ask when he found out that Sha Ron had HIV "This is the first time I'm hearing that," he says. "Does that mean Sha Ron can get AIDS?" A reporter's nightmare: It was not my place to give him this information. After advising him to talk with his mother, I call a psychologist who knows the family. "Oh, Eugene definitely knows," she says. "He told us the same thing two years ago when we interviewed the family. He's in a serious state of denial. There's a lot of anger there." (Sha Ron died shortly after this conversation.) It makes sense that young people like Eugene would not want to think about what their futures might hold.

Teenagers are the least likely to be adopted when a parent dies. If relatives dorit want them, their best hope is a group home; many teenagers simply disappear onto the streets. But Quiana Vidal, a 15 year old Queens resident, has responded to her situation with a fierce resolve. Her mother, Lillian, is a 35 year old former drug user who told Quiana of her infection shortly after her diagnosis seven years ago. At first Quiana rebelled, playing hooky and smoking, until her mother told her it would only make her sicker. Now, her mother says, "she's doing wonderful." Well, in some ways. "When I think about my mom, I get headaches," Quiana says. "Sometimes I can't do my homework. I don't sleep too well. I have circles under my eyes, a lot of stress. I cry sometimes at home, and if my mom catches me, she tells me it's better for her to die, because she'll be in peace, she won't suffer anymore. Sometimes I think my mother must be terrified and that makes me scared." Quiana has been left back in school twice because of the time she's spent helping her mother, shuttling back and forth to her grandmother's and changing apartments. The only person she has discussed AIDS with is her school psychologist; she'd once seen her mother tell a man whose response was to run to the bathroom and throw up. "Now when people ask me," says Quiana, "I say she has a heart condition or cancer. I can't really trust anybody." Quiana doesn't have any close friends in school. "They all want you to cut classes, smoke, take acid," she says. "I'm afraid that most of them are sick, because they shoot drugs, and sex is very popular, too." But not with her she's still a virgin, and after one experience with pot, she's sworn off drugs. "Whenever I have sex, I'm gonna do it wisely," she says. "After I'm married. And I want to become a lawyer. I want to do special things for kids, get them off the streets, and get the bad people off the streets who are selling these drugs. I want to make my mother proud of me."

With heterosexual transmission on the rise, cases like Laura Jimenez's will become more common. But for now, women like Lillian Vidal, impoverished IV drug users for whom a positive HIV test was a wake up call, are far more typical. These women have struggled against incredible odds to get clean, to have a say in their children's futures. How will we as a society deal with these women and children? "People want to block drug users out," says Elizabeth Alvarado, a dark haired, slight 27 year old who grew up in Spanish Harlem and recently completed a 20 month drug treatment program that took her ten weeks to get into. "They don't want to see us at all. We need more help." She has two children, ages seven and five, currently being cared for by her mother; she's too sick to take them on frill time basis but sees them on weekends. "When I think about their futures, I get really emotional," she says, her eyes welling with tears, "because I don't know what the future holds for them. The last time Junior visited, he didn't want to leave. I told him, 'Mommy's sick, she needs some rest.' And he said, 'Mommy, I'll take care of you! I love you!' That broke my heart." When Laura Jimenez made out her will, "it was the hardest thing I've ever done," she says. "I've been through two divorces those were a breeze in comparison. To see what you want done with your child after you pass on, that really screwed me up emotionally." She stipulated that Mates natural father not have any kind of custody, because "it wouldn't be good for Matt." She assigned guardianship to her older sister Carmella, who's in her fifties and financially stable. But Jimenez also is hoping that her daughter, Lisa, will be able to finish school (she dropped out after a year of college when she had her baby), get a job, and qualify to be Matt's caretaker. Jimenez walks me over to Matt's room, which is painted deep blue and plastered with Mickey Mouseabiia. (She hopes to save up enough for the two of them to go to Disney World. "I want to dance with Goofy," he says.) She looks fondly at the cartoon characters. "Next year he's gonna want naked girls, right?" she says. Matt wrinkles his nose in confusion and distaste. "People gotta open their eyes and stop this stigma," she says. "It's not a gay disease, a prostitute's disease, a junkie's disease. It has no morals, no discrimination. It attacks a person and sucks the life out of them." As for herself, Jimenez says, "If I can see Matt reach eighteen, enjoy my grandchildren another eight years, I'll be satisfied with that. I was a hardvorking woman, did what I had to do for my children, tried to raise them the best way I knew how. I'd like to be remembered as a good person. I'm not giving up yet."

Renell Grant with her adopted son Phillip

Noel (left) and Angel, all in 1993. Phillip was born HIV positive; Noel and Angel lost mothers to AIDS.


In 1993 New York's Council on Adoptable Children (COAC) introduced an AIDS Orphans Adoption program to assist parents with AIDS in planning for the care of their children, "When the biological parent makes a decision early on, they can have peace of mind about their child's future," says Ernesto Loperena, COAC's Executive Director, The council helps birth parents to understand their options and recruits adoptive parents. "We empower the birth parent, who has control from beginning to end. They decide if the adoptive parents are a good match," Along the way, COAC provides legal assistance with the often complex paperwork, as well as support services for both the adoptive and birth parents. To date, COAC has matched 57 families, representing a total of 101 children, Over the next year they intend to work with an additional 48 families, Most of the women at Iris House, a community based drop in center in East Harlem for women living with HIV, are mothers. Opened in 1993, Iris House offers clients a welcoming haven where they can find comprehensive social and health services. According to Marie St. Cyr, the director of Iris House, a crucial part of the center's services is devoted to child care. "A majority of these women come to Iris House out of concern first for their children," she says. "Clients come by for counseling, support groups, health programs, or nutrition classes, knowing they can bring their children with them to the center," The mothers know their children are being watched right on the premises, so they don't have to worry. "Our programs allow mothers to take time for themselves, which in turn benefits the children," says St. Cyr. On May 7, some mothers from Iris House will participate in a march on Washington, D.C., that is aimed at increasing AIDS awareness.