By Chuck Strouse
By Scott Fishman
By Terrence McCoy
By Ryan Yousefi
By Ciara LaVelle, Kat Bein, Carolina Del Busto, and Liz Tracy
By Pepe Billete
By Ryan Yousefi
By Kyle Swenson
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.