KEVIN R. WEXLER / HERALD NEWS Shelia Charles, 54, has been on disability since 1995 for a heart condition. The Paterson resident, who can't leave her home without help, says the thing she misses most is going to church.

Welcome to Paterson, Disability Capital of the United States.

The city earned that dismal distinction last year when the U.S. Census released numbers showing nearly 30 percent of Patersonians are disabled. Among the city's working-age residents - those between 21 and 64 - the rate is even higher, topping 35 percent. Compare that with the national disability rate of 19 percent for working-age adults.

The disabilities afflicting Paterson can be invisible to the eye: Cardiovascular disease and cancer, diabetes and asthma, AIDS and mental disorders. The sickest residents live hidden in their homes, tied down by daily regimens of pills, oxygen and insulin injections.

DISABILITY CITY: PHOTO GALLERY Sunday, June 13, 2004: PART ONE Monday, June 14, 2004: PART TWO

"I'm just tired of sickness," says Shelia Charles, a 54-year-old Paterson resident with asthma, heart disease and diabetes. She has not worked in nine years.

In Paterson, disabilities have become entwined with unemployment, poverty and hopelessness. Across the country, the costs of disability have soared, and federal disability benefits have replaced welfare as the dominant, and more generous, form of social support.

Paterson is a dense and diverse city of 149,222 people, New Jersey's third-largest city. Tall smokestacks punctuate its 8.4 square miles, remnants of the glory days when the Silk City was a bustling industrial center whose factories and mills turned out silk and cloth, Colt revolvers and locomotives.

But the Silk City has become a sick city. Widespread illness saps the will and energy of many residents. Paterson's disability rate is a glaring symptom of community decline, as important as the abandoned brick factories or the annual murder rate.

"What companies are going to want to establish a new company in Paterson, N.J., if a third of the work force is unable to work?" asks Mitchell P. LaPlante, a sociologist who studies disability at the University of California, San Francisco.

Although many disabled people have jobs, a growing number are dropping out of the work force and applying for disability benefits. Some 9.7 million Americans received disability benefits from the federal government in 2003, up 85 percent since 1990. During that same period, the number of people on welfare dropped by more than half.

Experts disagree on the reasons for the disability boom, which began in the early 1990s. Some say Americans have become sicker, as illustrated by national increases in asthma, mental disorders and obesity-related illnesses such as diabetes and hypertension. Others blame economic changes that have left low-income, low-skilled workers behind.

Faced with stagnant wages and rising health care costs, unemployed workers are making a rational choice to apply for disability benefits, some economists say. In declining industrial areas like Paterson, disability benefits act as the new safety net.

"Disability is essentially the unemployment insurance of last resort," says Dr. Paul Fulford, a Paterson psychologist who screens applicants for disability benefits. "When people run out of unemployment insurance, they might say, 'Gee whiz, I do have a bad back.'"

That decision makes economic sense. Disability benefits pay more than welfare, and provide vital income and health insurance for people who cannot support themselves.

The federal government has two disability programs: Social Security Disability Insurance for disabled workers, and Supplementary Security Income for low-income people with disabilities.

SSI includes Medicaid coverage, and SSD includes Medicare after a two-year waiting period. Both programs have experienced immense growth since 1990.

"We're seeing a ton of SSI cases," says Howard Gregory, a staff attorney for Northeast New Jersey Legal Services (Paterson office). Gregory represents people whose disability claims have been denied. "It's definitely a major explosion in the past couple of years."

The city's disability rate may be traced in part to the harsh impact of inner-city life: poverty and exposure to drugs and violent crime.

The high disability rate shows the city isn't doing enough to prevent disease, especially among immigrants and the working poor, says Mark Schiffer director of Passaic County's Board of Social Services.

"The disability is after the fact. It's too late," he says.

Many of the city's working poor lack health insurance to treat their ills. Undocumented immigrants who have flocked to Paterson since the 1980s don't qualify for Medicaid. As a result, emergency rooms are overcrowded, and free clinics have long waiting lists. In this environment, preventive care is difficult, and chronic illnesses can worsen to the point of disability.

"Diabetes is a good example," says Schiffer. "If you're able to treat it, the disease is controllable and you can function. But if it's untreated, it can result in amputation or loss of vision."

The same goes for high blood pressure, the "silent killer" that many doctors call Paterson's worst health problem.

Left undiagnosed and untreated, hypertension can increase the risk of heart disease, kidney failure or a brain-damaging stroke.

The plastic tube snakes from her nose, over the worn upholstery of the stuffed chair, across the kitchen floor and down the hall. At one end, a noisy machine pumps out oxygen around the clock. At the tube's other end lives Shelia Charles.

Even with oxygen, Shelia speaks weakly. A few steps across the carpet and she's gasping. Asthma squeezes her lungs, pain needles her damaged heart. She is tethered to her home in north Paterson, unable to venture out without help.

Her son brings her groceries, and friends visit with prayers. But every missed church service adds to her pain.

"I want to do things," says Shelia. "I hate the conditions I'm living under, having to be on disability."

By the time she was 45, Shelia's body had screeched to a standstill, overloaded by multiple chronic illnesses. After her third heart attack, in 1995, she had to quit her secretarial job. But her medical resume kept growing. Diabetes. Gallstones. Kidney stones. Hernias. Joint pain. Anxiety. A spinal cyst that left her temporarily paralyzed. More surgeries than she can remember.

"I've been in and out of the hospital so much," she sighs. She now lives on $595 a month in SSI disability benefits.

Shelia arrived in Paterson in 1967, following a boyfriend from Southern Pines, N.C. She got pregnant at 17 and worked at a bottling factory. She was pregnant with her second son when her boyfriend was drafted for the Vietnam War. Shelia was left alone with two children and went on welfare. When her boyfriend came home, he was "changed," Shelia says. He had flashbacks and nightmares. The relationship fell apart.

Shelia began smoking cigarettes to cope. She tried another factory job but quit because she felt too depressed to function. She met a new boyfriend and had a third son with him. But she was still a single parent, and Paterson had started to scare her. Her new apartment, in public housing, was burglarized the day she moved in.

"It's stress, a lot of stress, especially if you worry about where you're going to live, if someone is going to come in and steal what you have, and if someone is going to approach your kids on the way to school and entice them with drugs, or molest them."

Even on welfare, Shelia struggled. "It was not enough, by no means with three kids," she remembers. She had Medicaid and visited the doctor, but her health deteriorated anyway.

"It just seemed the health problems started piling up, building up and building up, one thing after another."

In 1979, Shelia says, she had her first heart attack. She was 29.

Shelia's story is sadly familiar to social workers and researchers.

"For a mother not to be able to feed her kids, that's the most stress a mother can go through. And she can get very sick," says Jona Denny, a Passaic County social services coordinator.

Since the 1960s and 1970s, poor urban neighborhoods have been hit with wave after wave of epidemics: "AIDS, crack, violence, violence-related mental health problems, tuberculosis, asthma and now obesity," says Mindy Fullilove, a professor of psychiatry and public health at Columbia University. "Those diseases layer on top of one another, not just in those places but in the same people."

In low-income urban areas, poverty can increase malnutrition; violent crime can cause bodily injury and long-term stress; and poor air quality can aggravate asthma. AIDS is also a major health problem in Paterson; the city is home to more than 1,600 HIV-infected residents.

More than 80 percent of Paterson's residents belong to minority groups, which typically have higher disability rates. Numerous studies show that minorities, especially blacks and Hispanics, have less access to medical services and can receive unequal treatment from doctors and hospitals. Countywide statistics reflect these disparities. According to the state, death rates from stroke in Passaic County are 58 percent higher for blacks than whites. Injury death rates are 55 percent higher for blacks than whites, and cancer death rates are 38 percent higher.

Bad habits harder to break in Paterson

Many health problems, of course, stem from personal behaviors: poor diet, lack of exercise, smoking and drinking. But some studies indicate that healthy habits are harder to sustain in some neighborhoods. One survey found white neighborhoods had four times as many supermarkets as black ones, while poor neighborhoods had three times as many bars as rich ones. Poor areas tend to have fewer parks, too, and residents sometimes are afraid to go outside to walk or exercise.

Fullilove has studied disadvantaged neighborhoods in Harlem, Brooklyn and the south Bronx.

"All the good moms have fat, unfit kids," she explains. That's because protective parents want to shelter their children from drugs and street violence, so they keep them inside. The children gain weight, even become obese, and succumb to associated health problems such as diabetes and high blood pressure, Fullilove says.

Adults gain weight for similar reasons. Cheap fast food is plentiful in poor neighborhoods, and sometimes the only choice if you don't have a car, says Dr. Georges Benjamin, executive director of the American Public Health Association.

"People try to feed themselves to stay alive and not necessarily with an eye on nutrition," says Elease Evans, who grew up in Paterson and is now director of the Passaic County freeholders.

As a single mother in Paterson, Shelia Charles had little time to think about diet or exercise, she says. Stress was a constant in her life, and it worsened the blood pressure problems that began when she was a teenager. She worried constantly. "I'm just a nervous person," she says.

"Nerves" seem to haunt countless Paterson residents; doctors call it stress.

Being extremely poor, or a minority, or a recent immigrant, can be stressful, and studies show that long-term stress can increase one's risk of cardiovascular disease and vulnerability to infections. Stress also can worsen chronic problems such as asthma, diabetes, depression and obesity.

"Stress is known to make illness more common, or more frequent," says Dr. James Pruden, an emergency room director at St. Joseph's Regional Medical Center in Paterson. "Stress clearly suppresses the immune system, stress interferes with sleep. So stress does have an impact."

Shelia Charles, for her part, has no doubt that stress made what was bad, worse.

"It tears the body down," she insists.

The grind of her daily life as a single mother, plus her fears and setbacks, also sapped her will to take care of herself.

"You have a pain here or there, you don't worry about," she says. "You just keep going, 'Hey, I got kids at home.' Or you don't take the medication the way the doctor said. I get so tired of taking medicine. I get so tired that every now and then I don't take it. Which is only hurting me."

Cities such as Paterson, with their histories of drug abuse and crime, are now seeing the delayed health effects surface. Even for those who never did drugs, never touched a gun.

"Trauma is very disabling. If you're having nightmares all night long, having flashbacks, it's hard to work," Fullilove says. "Even if you yourself don't get shot, you know somebody who's shot. Even if you don't have HIV yourself, you know someone who died of it. How much premature loss have people in Paterson experienced?"

Paterson's health problems are not unique. Miami is second on the Top 10 list, followed by Newark, Detroit and Birmingham, Ala. But analysts cannot explain why Paterson has the dubious distinction of being No. 1.

Immigration may partially explain it, local officials say. At least one-third of Paterson's residents are foreign-born. Many new immigrants have no health insurance, either because their jobs don't offer the benefit, or because they are undocumented and, therefore, ineligible for government programs such as Medicaid and Medicare, Schiffer says. That means they often don't get the treatment and medication they need to stay healthy.

Some immigrants arrive with disabilities, or with chronic illnesses that can worsen over time. Often, health care was less affordable or accessible in their home countries than in the United States.

Ricardo Garcia, for example, moved to Paterson in 1996 from Lima, Peru. As an infant, polio cost him the use of his legs. Because of medical delays in Peru, he didn't receive the vaccine in time, he says.

Garcia, 37, says Paterson is tough for people in wheelchairs. "You can't find ramps everywhere," he says. "Sometimes I have to go around the whole block just to find a place to go down."

But economic opportunities for disabled people are better in the United States, says Garcia, who's raising a teenage son on his own. He chose Paterson because his mother lives here. He is studying for a degree in human services at Passaic County Community College, where he also works part-time in the library. (SSI allows recipients to work part-time and not jeopardize their checks provided their total income remains below a certain level.)

Benjamin Santos, 39, also moved to Paterson to live near his mother. He has not walked since age 4, when a car jumped the curb and crashed into him on the sidewalk. Unlike Garcia, he finds Paterson easy to navigate in a wheelchair, at least when compared with his hilly hometown in Puerto Rico. That's one reason he decided to move here in 1999.

Disabilities come in many forms and can affect people in different ways. Obvious mobility problems like Garcia's and Santos' account for fewer than 12 percent of the disabilities among working-age adults in Paterson, according to the 2000 Census. It classified disabilities as "physical" (inability to walk, for example), "mental" (depression, mental retardation) or "sensory" (blindness, deafness).

The census also asked if any health problem made it hard to leave the house, care for oneself or hold a job. The job-related question, which tracks so-called "employment disability," accounted for almost 42 percent of the disabilities reported by working-age Patersonians.

While more than one-third of working-age adults in Paterson reported having a disability, not all of those adults get federal disability benefits. That's because some disabled adults work. Others receive workers' compensation, private disability insurance or welfare with a medical exemption from work requirements.

But in Paterson, the federal SSI benefit is a common form of support for people with disabilities. According to census estimates, almost 4,000 of the city's households, or about 9 percent, receive SSI income. That's twice the national rate and includes households where more than one person may be getting the benefit.

But stories tell far more than statistics. Every person on disability benefits has followed a different path toward dependence, a road marked by unwelcome milestones of tragedy, pain and loss.

Drug-related crime disabled 25-year-old Maurice Giles. He pulls his baseball cap tight over his scalp, hiding the scar from a bloody street fight. Four years ago, Giles was jumped in a turf war. His rivals beat him with a car jack, putting him in a coma.

"I used to sell drugs," he says. "I was young and making more money than they were. And they didn't like that."

After rehabilitation, Giles was left with a partially paralyzed left arm. He receives $550 a month in SSI. He keeps his left hand stuffed deep in his jeans' pocket, the elbow swinging limply.

Or take 50-year-old Keith Jordan. Three years ago, Jordan blacked out and collapsed, his limbs shaking and in spasms. He woke up in the hospital. Since then, he's had 20 more epileptic seizures. He also suffers from high blood pressure and kidney failure. Three times a week, he gets dialysis at St. Joseph's Regional Medical Center.

After being rejected twice, Jordan won approval last July for Social Security Disability Insurance (SSD). He worked more than 20 years as a shipping clerk at a Fair Lawn factory, and qualified for $1,000 in monthly benefits.

"It's all right if you don't have to do nothing. That's like $200 a week. I'm not complaining," Jordan says. "Welfare is only $210 a month."

Many Patersonians know that disability benefits are more generous than welfare, sometimes by hundreds of dollars a month. In New Jersey, SSI disability benefits can pay up to $595 a month for an adult. SSD benefits vary, depending on an individual's work history and Social Security contributions. The average monthly benefit is $862.

In contrast, Temporary Aid for Needy Families (TANF) provides $322 a month for a single parent with one child, or $488 for a parent and three children. General assistance, a welfare program for single adults, pays $140 or $210 for adults with medical problems.

In Paterson, many residents learn about disability benefits through word of mouth.

"It's no secret," says Gregory of Legal Services. "The horse is out of the barn when it comes to SSI."

Economists point out that applications for disability benefits increase during tough economic times. For example, SSI applications jumped 60 percent over the four years that followed the recession of 1990. Applications dropped 30 percent between 1994 and 1997, and began rising again in 1998. The year after the recession of 2001, application rates rose almost 10 percent.

Rising health care costs also have increased the value of the benefits, since they automatically come with Medicaid or Medicare. Unlike welfare, the benefits carry no time limits. Once approved, more than 85 percent of recipients collect benefits until they die or retire onto senior benefits.

"There's a kind of culture of disability," says David Autor, referring to what demographers call "disability belts." Autor is an MIT economist who studies disability issues. The "disability belts" - characterized by high poverty rates and poor job opportunities - include counties in West Virginia, Alabama and Mississippi. Paterson shares those characteristics, Autor says.

"The more people who do it, the more likely you are to find out about it," he says, "and the more likely you are to say 'Well, everyone else is doing it.'"

Disability advocates and local lawyers emphasize that disability benefits are not easy to get. The process is complicated and may involve years of medical examinations and administrative hearings. More than half of all applicants are turned down on the first try. Many applicants give up. Still, the disability rolls continue to grow as more and more people apply.

Disability benefits cost the federal government $104 billion last year, an increase of 142 percent since 1990. That's 4.8 percent of the federal budget.

"I think it's a disaster," says David Wittenburg, an economist with the Urban Institute in Washington, D.C. "Because we're going to have these budget woes."

CONTINUE TO PART TWO

Reach Carolyn Feibel at (201) 646-4727 or feibel@northjersey.com.