By Michael E. Miller
By Ryan Yousefi
By Kyle Munzenrieder
By Sabrina Rodriguez
By Michael E. Miller
By Carlos Suarez De Jesus
By Luther Campbell
By Kyle Munzenrieder
Since the beginning of this year, Vivian Rolon's living space has shrunk from a two-bedroom apartment to a motel room to a tiny corner of her son's kitchen floor. That is where she lives right now: on a doubled mattress in front of a television. On top of the TV she has scattered ten bottles of prescription medicines, half a pack of Marlboros, and a pink plaster figurine of an angel. What belongings she hasn't lost or discarded she has stuffed into cardboard boxes or hung on a metal clothes rack angled into a hallway. At least, Rolon says, rolling her round, unfocused, dark eyes, she isn't in a homeless shelter.
It wasn't a simple thing for 44-year-old Rolon to get to this desperate point. It took months of mistakes, miscommunication, and the kind of persistent bad luck that feeds on people who are trapped in poverty. But mainly it took getting AIDS and then having to negotiate a sprawling, pitfall-plagued system of social and medical services. This bureaucracy was established to help AIDS sufferers, but its very unwieldiness sometimes turns against its intended beneficiaries. Rolon isn't an innocent victim of a heartless system. She has spent most of her life refusing to play by many of mainstream society's rules, including those against using and selling drugs. But Rolon's own flaws aren't entirely responsible for her dilemma. She has in crucial ways been abandoned by the very government programs intended for people like her: the poorest and sickest. And that's why she lives on a kitchen floor in Hialeah and worries about her last suspicious blood test and the piercing pains in her left breast.
Rolon squeezes her way down an aisle between two racks of donated clothing at the People With AIDS Coalition (PWAC) thrift store on NE 39th Street just west of Biscayne Boulevard. "Somebody should clean this place up," she remarks in a loud voice that carries traces of her upbringing on Manhattan's Lower Eastside. "Piss-poor shit here."
Rolon has stopped by to visit a friend who works at PWAC, a nonprofit advocacy organization that in recent years has been so distracted by internal feuds and sexual politics that it barely functions. Rolon worked at PWAC from 1994 to 1997 when she wasn't sick, volunteering her sharp tongue and swaggering assertiveness to resolve emergencies faced by people with AIDS who didn't know where to go or weren't getting the kind of help they needed, people who had hit a dead end somewhere in the labyrinthine AIDS services system. Rolon never thought she'd wind up there herself.
She is a nuyorican, born in New York to Puerto Rican immigrants. Her mother claims to be a full-blooded Taino Indian and her father was white, of Spanish extraction. About an inch over five feet tall, in the past year Rolon has added maybe ten pounds to her top-heavy frame, which narrows to thin, muscular legs and small, wide feet. Her curly black hair is often frizzy and uncombed these days, and her gait is sometimes unsteady because of back pain, vertigo, and bad eyesight. Heavy shadows linger under her eyes.
This particular afternoon Rolon has pinned her hair back with little plastic butterfly clasps and wears a turquoise T-shirt and white pants. She's on her way to the Food For Life Network, about five blocks from PWAC, to pick up a week's worth of groceries. Because neither she nor her twenty-year-old son has a car, Rolon must take a bus from Hialeah to pick up her food, visit her social services case manager and the methadone clinic in Liberty City, go to the doctor in Miami Beach, and pick up medicine in Coconut Grove.
"Haven't seen you in a while, Vivian," the sixtyish woman behind the counter at the thrift shop notes unenthusiastically.
"They don't want me over there," Rolon replies half-jokingly, tossing her head in the direction of the PWAC office, a separate building across a gravel parking lot. "I'm too much woman for 'em."
Now her friend Charles Cole stops his minivan outside. He's back from a lunch run to McDonald's and gathers up several bags of sandwiches and fries to bring inside. Rolon walks slowly over and they embrace wordlessly. When Cole inquires about Rolon's health and affairs, she tells him she's still waiting (three years and counting) for a decision on her claim for Supplemental Security Income (SSI). These cash payments, administered by the Social Security Administration but distinct from regular Social Security disability benefits, are essentially welfare for the disabled and are the main source of support for thousands who are unable to work owing to AIDS.
Although the process of applying for SSI is never quick or simple, a three-year wait on a decision is several times longer than usual. In addition because Rolon's initial application was appealed (a two-year process) before it got to its current stage in the process, she's actually been waiting for five years. "I'm so fucking tired, Chuck," Rolon confesses to Cole. "I'm so tired of just trying to keep afloat." Her friend can understand at least part of Rolon's complaint; his late companion Charles Benton waited two years for his first SSI check. It arrived in the mail two weeks after his death.
Rolon, however, doesn't have a companion willing to mortgage his house and go into debt to pay her bills, as Cole did for Benton. She first applied for SSI in 1994, after being diagnosed HIV-positive and while she was still able to work. The application was denied the next year; an appeal failed. By the time an administrative law judge reviewed her claim in February 1996, Rolon had had full-blown AIDS for a year and had been referred to a psychiatrist for the depression and disorientation that accompanied the disease. Following that hearing, and despite making at least a dozen visits (by her count) to the Social Security office in downtown Miami, she heard nothing about the status of her claim until this past January, when an attorney made inquiries on her behalf. But so far the claim has been neither approved nor denied, meaning Rolon still has zero income, and that medical care for her is generally more limited and inconvenient.
But at the moment Rolon faces a more immediate crisis: housing. For the past four years her rent has been paid by a federal program called Housing Opportunities for People With AIDS (HOPWA). Rolon lost her HOPWA benefits at the beginning of this year, right about the time she was evicted from a two-bedroom apartment where she'd been living for almost eighteen months. She got an emergency grant that paid her February rent in a Biscayne Boulevard motel. Then she was out. The only place she could go was to the little garage apartment her son Carlos shares with his girlfriend Yamilet and Yamilet's four-year-old son Alex. (At Carlos's request, his girlfriend and her son are using pseudonyms for this story.)
"I know it's a strain on them," Rolon allows. Sitting cross-legged on her folded mattress on the clean white-tile kitchen floor, she runs her fingers through her tangled hair. Her dusky face is blotchy, and her eyelids look almost too heavy for her to hold open. Winter sun is shining in through a window overhead, illuminating a line of trophies on the window ledge and dozens of plaques hanging on the walls, reminders of Yamilet's outstanding high school track career. Jerry Springer is on the TV. "When I first came here I felt comfortable. But now -- it's just a little room and there's such limited privacy." Rolon's voice wavers, and for a minute she wanders to another subject. Then, with a shiver, she returns to the present: "I don't know what I'm going to do. I'm so afraid I'm going to have to go to a shelter."
Carlos won't hear of it. He is as shy and soft-spoken as his mother is assertive, and he bears only a slight resemblance to her: lean, black hair shaved close to the head, long-lashed, almond-shaped eyes. He doesn't have a high school diploma, and after more than a year of unemployment he recently returned to a job at Wendy's.
He worked on honors computer projects when he was in high school and wants a career in that field, but he says he needs more training. In the past several months, Carlos was more preoccupied with his mother's cascading succession of crises than with making his own way.
That left 21-year-old Yamilet, the willowy, brown-haired daughter of Cuban immigrants, as the household breadwinner. She has an office job in Coral Gables. Carlos moved into her apartment about six months ago. Five years earlier they had been high school sweethearts, and ran track together at Miami Springs Senior High. But he dropped out in his junior year, and she later turned down a track scholarship to college because she was pregnant with Alex. (Carlos isn't the father; he and Yamilet broke up when they were still in school and hadn't seen each other in more than four years when they chanced to meet again this past fall.)
"She's a good mom," Rolon says, nodding her head. "I commend her. She refuses to get food stamps and she works really hard."
Carlos has three older sisters: Natalie, who is 29 years old, lives in a small town in Puerto Rico; Veronica and Tisha, ages 27 and 26 respectively, live in South Florida but didn't want to be interviewed for this article. Rolon's relationships with her two youngest girls have been volatile. She has virtually no contact with her own mother in New York or her older brother in Miami. She is close to an older sister, a registered nurse who lives in Little Havana. Her father, whom she adored, died of lung cancer two years ago, after moving to Miami and joining Rolon in a small apartment. She has been divorced nearly twenty years from the father of her children, Carlos Rolon, who works for Miami-Dade County and has remarried.
Vivian Rolon moved to Miami from New York in 1980, got a divorce, and stayed here, she says, only because the custody terms required her to keep the children available to visit their father. Rolon is like many to-the-bone New Yorkers, expressing antipathy for Miami and its often provincial ways. But then she hints of a troubled, violent youth, and concedes she and her children are probably better off here. She often talks as though she's on the run from New York, as if her past could grab her after almost twenty years.
She studied nursing after high school but never obtained a license. For years she worked as a medical assistant and a nurse's aide in New York's hospitals and clinics. In Miami she held similar health care positions in addition to other office jobs. Social Security records show she worked until 1992, the year Hurricane Andrew hit. After that she worked sporadically, but her employers paid her under the table, and at times she was sidelined because of poor health.
For several years following her divorce she lived with a Cuban man named Pepe, whom Carlos still thinks of as his father. But Pepe died of cancer in 1990, and a year later Rolon herself was diagnosed with breast cancer. She says she underwent a lumpectomy at Jackson Memorial Hospital; months later several tiny tumors appeared in her left breast and were removed in a laser procedure. Then the 1992 hurricane destroyed much of her home and possessions. Her daughters weren't living with her then, but Carlos had to move in with his father and stepmother in Miami Springs.
Rolon and Ralph Madrigal began dating during the time she was being treated for cancer. They had been introduced several months earlier at a party, then happened to bump into each other at a clinic at Jackson. "That's where I met Ralph," Rolon says ruefully. "That's how I met my next disease." He told her he was living on disability from injuries he received as a Navy SEAL commando in the Vietnam War. They were soon married.
It wasn't until more than a year into the relationship, when Madrigal couldn't hide his ailments any longer, that Rolon finally discovered he'd lied to her about everything. He was HIV-positive. He was on SSI. And he'd never been in the military. He was also abusive physically and verbally. Yet instead of leaving him, she took care of him. Soon he barely had enough strength to sit up, much less throw a punch. And Rolon says she was the only one at his bedside when he died at Palmetto Hospital in 1995. "I guess I still love him," she says now, "even though I never forgave him for what he did to me."
Rolon didn't easily come to terms with Madrigal's deception. She left him for a while in 1994, after testing positive for HIV, and was living in a motel on Biscayne Boulevard and 53rd Street. "One Friday afternoon in September I sat in my room and wrote letters to each one of my children, to my father and sister, everyone who was important in any way to me. I explained that I had HIV and I was going to commit suicide," she recalls.
She left her room that evening, crossed the boulevard, and caught a bus south. "I was going to the Julia Tuttle," Rolon explains. "I'm Pisces. I love the water. I was going to drown myself." When she stepped off the bus at Biscayne Boulevard near 39th Street, she heard music and walked into a crowd of people on the sidewalk. An older, bearded man approached her and asked her name. "Whaddaya mean what's my name?" Rolon remembers saying. "It's none of your business."
The man told the clearly anguished but overly guarded Rolon she was standing in front of the PWAC offices and that she'd come upon a rare event: a mixer for HIV-positive, single, straight people. "So come on in," the man invited her, laying a hand on her shoulder.
"Get your white honky arm off me or I'll either call the police or stab you," Rolon retorted. (She was carrying her trusty New York stiletto.) But she stuck around anyway, and at the end of the night her acquaintance, who turned out to be PWAC founder and then-executive director Charles Hutchison, gave her a ride back to her motel. "I told him what I was going to do," Rolon remembers, "and he stayed there and talked to me all night. Toward the morning I dozed off, and when I woke up the sun was coming in through the window and Charles was still sitting there. He said, 'Please come with me to PWAC.'
"So I did," she continues. "The first thing when we walked in the office, the phones were ringing off the wall. Some guy answers the phone, and he looks up and says, 'Charles, I don't know what to do with this one. They speak nothing but Spanish.' And Charles looks at me and asks me, 'Do you mind talking to them?' So I picked up the phone. That's how I started with PWAC. After that is when I started coming out of denial."
Rolon credits Hutchison, an outspoken and often abrasive activist, with teaching her the fine art of advocating for AIDS patients. "Picking up abandoned people," is how Rolon puts it.
She says PWAC paid her a stipend of $30 per day and provided her and other advocates with help paying bills or other in-kind assistance when necessary. By late 1995 Rolon's initial application for SSI had been rejected and the appeal denied. But her health was still fairly good, and one thing she didn't have to worry about was shelter: HOPWA was paying her rent in full, $450 per month, for an apartment on NE 108th Street.
In February 1996 Linda Kupersmith, an administrative law judge, heard Rolon's second SSI appeal, to which Rolon brought reports from physicians and psychiatrists and answered what she describes as a barrage of questions from Kupersmith about her eyesight and mental state. After a hearing the judge usually decides within 45 days whether to grant or deny the claim. That didn't happen in Rolon's case. Judge Kupersmith held off making any decision while Social Security staffers attempted to update Rolon's medical condition by scheduling medical consultations for her, according to John Raffa, Miami-area spokesman for the Social Security Administration.
Months and years went by, and the workers continued to make medical appointments and mail notices to Rolon, but she missed every exam. She says she never received the notices. If Rolon hadn't been an AIDS patient, Raffa says, her case would have been closed years ago for "noncompliance." But Social Security regulations prohibit closing out the files of AIDS victims even if there is no contact with the applicant. So Rolon's claim, unbeknownst to her, was stuck in a sort of SSI purgatory.
This was despite Rolon's contention that she or her son or one of her daughters visited Miami's downtown Social Security office on many occasions trying to learn the status of her claim. "They always told us the same thing," she recollects. "That the judge had not reviewed my case yet and we had to wait on the judge.
"There was one time I think about a year ago when I was in a catatonic state," Rolon goes on. "I wasn't eating or talking, I couldn't move, and Carlos got so upset he brought me down there. That was the day they told him they were missing my psychiatric record. That day he went to my psychiatrist and told him he needed him to please copy every page of my file even if he had to do it himself. My psychiatrist did, and my son went down there again with my file, along with the psychiatrist's business card, and handed it over to a Ms. Knight. Then we never heard anything after that."
In the summer of 1997, Rolon found a two-bedroom apartment on NE 26th Street. She'd been looking for a larger place ever since Carlos had moved in with her several months earlier. Rent on the two-bedroom was $625 per month, though, and Rolon didn't qualify for more than $500 per month from HOPWA. Carlos had recently quit his job at Wendy's, a move for which his mother takes responsibility: He'd gotten sick, she says, and his boss wouldn't allow him to cut back on his hours. "I was watching him slowly break down and I knew it was because of me," she says tearfully.
Despite the expense of the new apartment, Rolon thought she'd be hearing from SSI any day. And she says her boss at PWAC promised to pay the difference in rent and help with utilities until the SSI checks arrived. One of her daughters drove her to the Miami-Dade Office of Community Services (OCS) on NW 79th Street to sign the HOPWA lease. But before her caseworker would fill out the paperwork, he insisted that Rolon locate someone to vouch for the $125 per month HOPWA wasn't going to cover. So her daughter signed a paper promising to be responsible, even though she was about to move to New York.
Things went badly almost from the minute the lease was signed. After only a few weeks in her new apartment, Rolon was forced out of PWAC. Among other indignities, she was also accused of drug-dealing, along with her son, who sometimes helped her in the office. At the time PWAC was in more turmoil than usual; employees and volunteers were leaving, clients were complaining. In any case promises to help Rolon with her rent were off.
She says she got some money together to put down a security deposit and one $125 payment of her portion of the rent. After that, though, Rolon acknowledges that neither she nor anyone else paid the landlord the difference in rent. But the apartment was occupied, and the landlord, prominent Miami property owner and community activist Monique Taylor, was receiving a steady $500 per month from HOPWA, so Taylor decided she wouldn't pressure Rolon for her portion. "I just let it be," Taylor recalls. "It would have been far more difficult to see a woman in her condition homeless."
After Rolon left PWAC, she began working for a friend who was a heroin dealer. She helped him bag his merchandise for sale, she says, and he let her shoot up some of the smack. "I was in pain with these bone aches, and heroin kills pain," she explains. "It was just a mistake that lasted two months." Rolon becomes evasive on the subject of her drug use; she admits to having played around with different drugs, including heroin, when she lived in New York, but never getting serious about any of them. She insists she was clean in Miami (although for a time she was a heavy Percocet user) until she fell in with her dealer friend. It didn't take long for son Carlos to figure out what was going on, but he never confronted her.
"She would come home real tired in the afternoon and just go into her room and close the door and lie down," he recounts. "One time I found a Baggie. Then I saw a syringe. I sorta figured it out after a while. I'd come up and say, 'Mom, let's go grocery shopping.' I knew that was the last thing she was up to doing, and I really didn't want to, but it was my way of letting her know that I knew."
Rolon eventually decided she needed to check herself into a rehabilitation center, but she says she couldn't find any publicly funded residential programs for heroin addicts. "You have to be a crackhead," she observes with barely disguised bitterness. So she signed up with a methadone clinic. She says she quit methadone a few months later after the clinic kept increasing her dosage. She still sees friends from her junkie days but asserts she kicked the heroin habit on her own.
In the fall of 1998 Carlos moved out of the two-bedroom apartment and into Yamilet's cottage. Then, Rolon says, she was hospitalized again with an episode of the pneumonia that had first attacked her four years earlier. She says she also decided around this time to find a different apartment. By her account the rats, swarming termites, roaches, and heat (there was only one air conditioner) had become unbearable.
She found a smaller, less-expensive apartment and notified HOPWA of her choice. HOPWA clients can live where they want as long as the housing is inspected and certified at least once per year by a Miami-Dade County health inspector. The clients, too, have to be recertified by HOPWA each year as a way to monitor their health and income. Rolon was in the process of recertification at the same time she was planning to move to the smaller apartment.
But before anything was finalized, Rolon's leaking air conditioner caused part of the ceiling in the apartment below to collapse, according to landlord Monique Taylor. When Taylor entered the upstairs unit to let workmen in, she was appalled. "I can't even find a word to describe it -- unbelievably unsanitary," Taylor recalls. "Dishes were all over the sink so full of rotten food and soaking in water that the stench -- you wanted to vomit. I opened the refrigerator and slime was actually oozing from all the rotten stuff. Here was a person in the last stages of the disease living in filth. I absolutely flew off the handle because not only did she not pay her portion of the rent, but I was under the impression she had home visits or some form of supervision, so the condition of the apartment had not even entered my mind until then. I just immediately closed the door and went to the HOPWA office on 79th Street. I had to start eviction proceedings. It was as much for the condition of the apartment as for nonpayment [of rent]. However, nonpayment is the legal reason I had to use. It was clear to me this lady can't live alone and be responsible for her well-being." Taylor calculated that Rolon owed her $975, a low figure considering the length of her tenancy.
Rolon responded with a long letter to HOPWA lashing out at Taylor for not fixing a leaking pipe and leaking refrigerator, and for allowing rats, roaches, and termites to infest the building. Taylor isn't the only landlord who has accused Rolon of trashing her living area, though Rolon adamantly insists she can't stand living in unsanitary conditions and that she's being unjustly trashed. She insists her sister and brother-in-law had been helping her clean the two-bedroom in preparation for moving out. But she concedes it's been years since she has had the energy to do very much housework.
None of that would be much of an issue, though, if HOPWA had not cut off Rolon's benefits this past January. Under the federal HOPWA guidelines, nonpayment of rent is among several violations for which a client can be expelled from the program. That doesn't mean the client must be expelled, or "terminated" in HOPWA lingo, but it's one cause for termination.
After Taylor informed HOPWA she was initiating eviction proceedings, Emil Heredia, an OCS social worker in charge of the 79th Street office's long-term HOPWA clients, told Rolon he had to remove her from the program. The implications were chillingly clear: Without HOPWA she couldn't pay rent on anything bigger than a bus station locker.
Heredia neglected to inform Rolon that she could appeal the termination; however, he says he thought she knew because months earlier she had received a document advising all applicants of their right to appeal any HOPWA decision. Rolon says she didn't know any of this until late March, at which time she made a written appeal.
Rolon says she had missed a December court date regarding her eviction because official notification didn't arrive in the mail until the day of the hearing. Subsequently an eviction notice appeared on her door. As 1999 began Rolon was still living at the NE 26th Street apartment but panicking at the prospect of being thrown into the street. She called the Haitian American Foundation because she knew the organization sometimes provided emergency housing through HOPWA. She didn't tell them she'd just been terminated, and they agreed to pay for a month's stay in Stephan's International Motel on Biscayne Boulevard.
Carlos borrowed a truck while Rolon and a friend gathered up what they could from the old place. Furniture went to another friend's house and to the PWAC thrift shop; boxes of clothes and household items went to the motel room. Some possessions, including an unfinished tapestry given to Rolon by a now-deceased PWAC client, were left behind in hopes they could be retrieved later.
Rolon, shaken by the realization she had a month before again facing homelessness, became deeply depressed. She stopped taking her AIDS medication and sat alone amid unopened boxes. "It's a slow form of suicide," she said then. "I worked with enough people at PWAC to know one stage for a lot of people [with AIDS] is fear. You become afraid of everything around you; you're intimidated by the smallest things, every noise, every person. That's how I am. If [the Haitian American Foundation] finds out I'm terminated from HOPWA, they're going to kick me out of here, too. I know I'm not the only one. How many people have died because they were just totally abandoned? I'm not asking for glamour. I'm just asking, 'Please let me live a few years without having to wrack my brains to stay alive.'"
That wave of desperation gradually receded, and Rolon resumed taking her medication. But because she's taking protease inhibitors, the newer AIDS drugs with extremely precise dosage requirements, it's possible they're no longer effective as she hasn't been diligently following the regimen. She either picks up or has delivered at least a half-dozen bottles of medication monthly, but is erratic about visiting doctors, and claims to have been "kicked out" of some medical offices for having a "bad attitude."
Sitting on the twin bed in the motel room, Rolon mentally replayed the scene the last time she had been at the HOPWA office. Details of the crisp, bright afternoon were fixed in her mind. Two days earlier, she remembered, she had asked Emil Heredia if she could make some agreement with Taylor to pay the outstanding $975, banking on the eventual approval of her SSI claim. "I was willing to have a legal document written up, even use an SSI lawyer, even add interest to it," Rolon says. "If [Taylor] wants a thousand straight, I'm willing to do it. Just to be able to get back on HOPWA. Emil said he was going to speak to her. When I came back to the office [two days later], he told me she wouldn't go for it and that I was terminated. I just stood there, then I busted into tears. I said, 'Emil, what do I do? Where do I go now?'"
When first contacted by New Times in late February, Heredia said Rolon couldn't continue in the program because she had not made any attempt to pay back her portion of the rent. "If she had made arrangements with the landlord to pay back that money," he explained, "we could make arrangements with her."
A few weeks later, on March 4, Heredia's account changed somewhat. "I believe [Rolon] had mentioned some repayment plan," he hedged. "I was trying to find out if there was some possibility she could remain in the program. I called the contact person at the Miami-Dade Housing Agency (MDHA) about making arrangements to pay, and [the contact person] said he'd have to check with his supervisor. That's when the supervisor told him it wasn't possible."
This was Heredia's first mention of the MDHA, which recently assumed oversight of the HOPWA program. The contact person at MDHA to whom Heredia referred was Juan Carlos Jusino, director of special programs. Jusino referred inquiries to his supervisor Maria Diaz de la Portilla, who referred inquiries to MDHA's director of public information Sherra McLeod.
On March 12 McLeod made the unexpected revelation that MDHA division director Dale Poster-Ellis had checked the computerized HOPWA file on Rolon and had found she wasn't in trouble after all. "Even though [Rolon] was evicted from that home, she is not out of the program," McLeod says. "We have not terminated her from the program. She needs to get back in touch with her social worker, who will get in touch with our staff. We don't want to abandon this client and leave her in a worse situation than she is now. I'm sure something can be worked out."
But why had Rolon been told just the opposite two months earlier? McLeod says she's trying to find out.
If the HOPWA debacle was a case of negligence and equivocation, Rolon's interminable experience with SSI seems to have been handled with little comprehension of reality -- her reality and that of other AIDS sufferers.
In December 1998 after deciding she needed some legal help, and having been turned down by several lawyers, Rolon brought her eviction notice to the Miami law firm Marder and Gonzalez, which specializes in Social Security disability cases. "We've been trying to help her find out what the hell is going on," attorney Lilli Marder says. "We wrote to Judge Kupersmith and told her our client came to a hearing in February 1996 and had not received a decision or correspondence. The client is in dire need and is unable to pay her rent. The lady justifiably is going crazy about this and needs to be taken care of. I would venture to say they could have lost the file. I've had this happen before, where cases go on for years when what's really happening is nobody can find them."
After Marder wrote to Kupersmith in late December, the judge ordered Rolon to undergo a new medical evaluation, a "consultative exam." John Raffa, the Social Security spokesman, says his records show an exam scheduled for January 16 to which Rolon never went. In fact, Raffa adds, during the past three years, at least a dozen consultative exams were set up for Rolon, but she didn't make any of them. "It appears one of the problems is this Vivian Rolon moves a lot," Raffa says. "She just made it almost impossible for us to reach out to her. She outright missed consultative exams and/or would refuse to go to them. When they would find her, they'd send her registered letters with the dates [of the appointments]. And then she just wouldn't show up. We normally don't do registered letters, but they sent them to her because they had so much trouble finding her." Two of the three addresses Raffa has on file are for Rolon's residences prior to 1996, and another is her ex-husband's current address, where she has never lived. She insists she watched as Social Security personnel recorded her two most recent addresses, on 39th and 26th streets.
"The bad news is they shouldn't have kept [the file] open so long," Raffa says. "The good news is if they now approve her, she'll get all retroactive benefits from the date of the first filing, which was November 1994." (At up to $500 per month, the retroactive amount alone would be a fortune for Rolon, as much as $25,000.)
Finally in early March, Rolon got word from Marder's office that two more consultative exams (medical and psychiatric) had been set for later in the month, and this time she went. Physicians have three months to file reports to the judge, however, so Rolon is still marking time.
Raffa can think of many mistakes both the government and Rolon could have made that resulted in Social Security's failure to have her more recent addresses on file. He doesn't want to blame either party. But he is certain that inquiries from attorney Lilli Marder and New Times have finally prompted the government to move on Rolon's case. "She's on the right track, no question about it," Raffa concludes. "I do have to say, though, that none of this means she's going to get approved. Social Security disability means you're permanently unable to work." That would seem to describe Rolon; among her papers is a doctor's note hand-printed in large, underlined letters: "VIVIAN ROLON WILL NEVER RETURN TO WORK."
While Rolon waits for SSI, Marder continues to work on plenty of other cases that have been lingering too long. "It is not uncommon for a client to not know about a medical appointment," the attorney's office manager Ana Lueiro says, "and it is not uncommon for Social Security to lose contact with a client. In Dade County the whole process is a mess. In Broward it's not so bad."
Largely because of the AIDS epidemic, and because of repeated large influxes of immigrants, Raffa says, Miami-Dade has seen greater-than-usual increases in numbers of SSI applicants -- far greater than either Broward or Palm Beach counties. Miami has the fourth-highest incidence of AIDS of any municipality in the nation, according to the Centers for Disease Control, while U.S. Census figures show Miami-Dade to be the sixth poorest county with a population over 500,000. Raffa estimates that as many as 500 SSI appeals are pending in Miami-Dade County at any given time.
Because only eight judges are assigned to hear those appeals, the Social Security Administration routinely sends down visiting judges from southeastern states such as Kentucky and Alabama, which have smaller caseloads. The agency doesn't record the number of applicants turned down for disability payments, but in Miami-Dade County 111,545 people received SSI in 1998, compared with 24,000 in Broward. A combined total of $228 million per month in Miami-Dade goes to SSI and regular Social Security disability recipients.
For the time being Rolon doesn't have any of that money. She is standing in line at the nonprofit Food For Life. "How many other people are out there like me, losing T cells because of tension and stress caused by being ignored by the system?" Rolon muses as she waits at the Food For Life counter to pick up her weekly groceries. The organization's small front office at 4330 NE Second Ave. is crowded, mostly with young women of color. If they're in that line, they're probably very much like Rolon. "One of our biggest enemies is tension and stress," Rolon goes on, her frown duplicated on the forehead of the younger woman waiting behind her. "And here we are getting beaten down because we have stepped into a vortex and we can't get out."
In about an hour, six plastic bags of groceries are ready. Rolon gathers them up and walks to the bus stop two blocks away. In another hour she steps stiffly down to the pavement at Hialeah Boulevard and E. Fourth Avenue, six blocks from home. By the time she crosses under the mango and orange trees shading the scrubby patches of grass in the yard, she feels leaden and light-headed at the same time.
Rolon unlocks the apartment door. She leaves the bags of food on the floor in the kitchen and lowers herself, grimacing, onto her mattress. It's almost 5:00 p.m. Yamilet isn't yet home from work, and Carlos has probably gone to pick up young Alex from a neighbor's house. She pulls her shirt off and puts on a satiny turquoise housecoat. Then she takes a deep breath and pain radiates through her left breast. She intends to make a doctor's appointment, but hasn't yet.
Four boxes of her possessions are stacked in the kitchen and adjoining hallway, but six more had to be stored outside on the tiny front porch, next to an old sofa that also doesn't fit inside. Carlos and Yamilet often sit there together in the evenings, keeping an eye on Alex as he plays in the yard.
Rolon says she hasn't even opened most of the boxes and doesn't know when she will. The manager of the motel where she last lived threw out whatever wasn't boxed, but Rolon can't remember what she has and what she has lost. She just knows she's down to ten boxes and a rack of clothes.
Now that it looks as though she may soon be able to rent a place of her own, the immense foreboding that had been draining her for weeks has eased. But she'll never let herself be certain of anything anymore. "I've lost my home, my dignity -- everything," she declares, forearms folded tight over her stomach. "Do you know what that feels like? Do you know how many times I've started all over again?