There was a lump in her throat as Lilibeth Navarro looked on with 2,000 other disabled people as President Bush signed the historic Americans with Disabilities Act last month.
The wide-ranging civil rights law, which prohibits discrimination against the disabled in employment, transportation, public accommodations and other areas, is "the world's first declaration of equality" for the disabled, Bush proclaimed. Others had called it an "emancipation proclamation" for 43 million disabled Americans.
For Navarro, who was stricken with polio when she was 5 months old, there was a feeling of personal accomplishment that day on the South Lawn of the White House. She was one of dozens of demonstrators--many, like her, in wheelchairs--who were arrested last March in the Rotunda of the Capitol after blocking entrances and chanting "ADA now!"
In her two years as an activist, Navarro, 34, a member of the organization American Disabled for Accessible Public Transportation (ADAPT), has been arrested 13 times in demonstrations and actions to focus attention on the plight of the disabled.
But for all the 1960s-style passion with which members of this growing new civil rights movement have pushed for the Americans with Disabilities Act, many believe that the law probably won't amount to a hill of beans in the grinding struggle for survival that is the lot of many disabled people.
The legislation places the disabled in a special protected class, they say, but it can't change attitudes.
"You can have all the ramps in the world," says Navarro, who scoots nimbly around her Hollywood apartment in a motorized wheelchair, "but if there's still an oppressive environment, you're still discriminated against."
Handicapped people who rely on government programs and public services to live independent lives say they spend their days in a debilitating battle to maintain personal hygiene, pay bills, buy groceries, meet appointments and wangle benefits from parsimonious federal and state bureaucracies.
"We spend a disproportionate amount of time fighting to prove that we should be getting what we're supposed to be getting," says ADAPT member Ed Tessier, 22, a quadriplegic since he was injured in a diving accident six years ago.
Even in California, among the most progressive states regarding protections for the disabled, benefit checks trickle in like molasses and the buses, even the ones with the wheelchair lifts, zip past like lightning, critics say. So soured on "the system" have some become that they worry that the new law may be a first step in an effort to push large numbers of the disabled off the benefits rolls.
"They give you something, but what are they going to take away?" 41-year-old paraplegic Ken Yamanaka said as he worked out on special equipment in the gym at Casa Colina, a rehabilitation hospital in Pomona.
Skeptics like Yamanaka cite a constant chiseling away of benefits in the last 10 years--a process that they say is continuing even now. While President Bush was proclaiming the legislative "sledgehammer" to break down walls that hinder the disabled, his administration was seeking to shave 5% off the Medicare budget, on which 3.3 million handicapped people rely for medical treatment and durable medical equipment.
At the same time, the state is placing new restrictions on Medicaid benefits and cutting back on programs for the disabled.
Many of the disabled are among the most civic-minded members of society, advocates say. They follow the plodding annual budget debates in Congress and the state Legislature with the intensity of baseball fans watching a pennant race.
"(The federal and state governments) always end up cutting stuff for the people with the smallest voice," says Rick Tauscher, 43, paralyzed from the neck down in a boating accident 17 years ago.
His efforts to acquire a motorized wheelchair illustrate the infuriating rigidity of the benefits system, says the bed-bound Tauscher, whose 17-year-old manual wheelchair has broken struts and supports. The chair has collapsed beneath him several times, he says, once injuring him so badly that he had to be hospitalized with hemorrhages in his legs.
"A couple of firemen friends of mine are welding it now just so I can sit out in the yard once in a while," says Tauscher, a former mechanic and welder from Whittier. "I've been waiting almost three years for a new one."
When a doctor at Rancho Los Amigos Medical Center in 1987 prescribed a motorized wheelchair, which costs about $14,000, Tauscher figured his problems were over. He sent the order to a medical supply firm in Long Beach and waited for delivery.
But the federally administered Medicare system, which pays for 80% of the cost of durable medical equipment for the disabled people the program covers, had set a maximum price tag on the chair of less than two-thirds of the actual cost.
So Tauscher was relegated to a kind of bureaucratic cul-de-sac. The supplier wouldn't fill the order until it was assured of payment. Because of federal regulations, Tauscher couldn't appeal the funding limitation until the order was filled.
"It's a Catch-22," says Sande Pond, a lawyer from the Western Law Office for the Handicapped, who is representing Tauscher and others in a class-action suit against the state.
If Tauscher had been covered solely by the state Medi-Cal program, which was supposed to pay the remaining 20% of the cost, he would have gotten his wheelchair long ago, says Pond. But because he has double coverage--Medi-Cal because he's destitute, Medicare because he paid into the Social Security system before being injured--he has hit a bureaucratic brick wall.
For Tauscher, the issue is a lot more than just a matter of principle. Quadriplegics need to spend time sitting up, so that their lungs will clear of phlegm. As the dispute about his wheelchair has creaked along, Tauscher has been hospitalized five times with pneumonia.
"One of the nurses who works with him says that, if he doesn't get out of bed, he's going to die," Pond says.
The Medi-Cal program recently agreed to pay for the wheelchairs for Tauscher and nine other plaintiffs in the lawsuit. Tauscher should get his within four months, state officials say. But the state agency refuses, as a general principle, to cover the costs of wheelchairs for the so-called "double-Medi" group.
Tauscher lies in bed in his little rented house in Whittier, a brooding figure covered from neck to feet with a sheet, a respirator beside the bed chigging away around the clock. "It's just an appeasement," he says. "It means that everybody in my situation is going to have to go to court to fight for medical equipment."
Most of the protections extended in the Americans With Disabilities Act have been in effect in California for a decade or more, activists point out. Current state law prohibits discrimination in employment by companies with as few as five employees (the federal law only applies to employers with 25 or more workers), orders local transit systems to provide lifts and ramps for the handicapped and requires newly constructed public buildings to offer access to wheelchairs.
State law even requires telephone companies to offer telephone relay services for telecommunications devices for the deaf.
But life is still frustrating for the disabled, many say. The hitches and roadblocks to a serene life are the kinds of things that are untouched by federal and state protections.
Like most of her peers, Navarro, a USC graduate with a degree in journalism, says her greatest difficulty is getting around the city. Unable to land a job in her field, she has been working as a part-time substitute teacher.
Just because buses are equipped to pick up people in wheelchairs doesn't mean that they do, Navarro says. "You get passed up by the drivers," she says. "The equipment breaks down."
Most localities operate dial-a-ride systems using specially equipped vans for the disabled. But service usually stops at 5 p.m., and there's little coordination between systems.
Independent disabled people often consider themselves "on time" to an appointment if they are either half an hour early or half an hour late. "But try telling that to an employer," Tessier says.
A spokesman for the Southern California Rapid Transit District said 95% of RTD buses are accessible to the handicapped. "Any operator who is known to be flippant and doesn't want to deal with it, we want to know about it so we can discipline him," he said.
Despite laws requiring wheelchair access, there still are many buildings in Los Angeles where the disabled can't enter and neighborhoods where the disabled must negotiate 10-inch curbs unbroken by curb cuts, advocates for the disabled say.
"According to our figuring, the city of Los Angeles will be entirely wheelchair accessible by the year 2800," says Bill Bolte, head of an activist group named Barrier Busters.
Bolte contends that 90% of the city's sidewalks, including those in such prime shopping areas as Broadway downtown, are inaccessible.
But the most frustrating aspect of being disabled is the increasingly unyielding benefits system, against which there is little room for appeal, disabled people say. Activists say there are hundreds of cases like Rick Tauscher's. For example, patients have been unable to get prescribed medications because of Medi-Cal pricing restrictions, and disabled workers have found their benefits eliminated because they were earning an income.
"It's like offering somebody a steak and taking away the fork," says Nancy Kennedy, 38, a quadriplegic who has spent half her life in a wheelchair after a diving accident. Kennedy, who has fought several bouts with pneumonia, says Medi-Cal has deprived her of a substitute for penicillin, to which she has developed an immunity, because of the drug's higher cost.
Activists note that employer groups are already complaining about the potential expenses of the law.
The most skeptical among them say that law will actually do more harm than good, making disabled people complacent. "Pretty words are being substituted for material progress," says Bolte. ". . . It's not going to materially change the lives of the mass of disabled people any more than the Civil Rights Act of 1964 changed the lives of black people."
But an increasing number of the disabled are adopting the militant attitudes of the black civil rights movement of the 1960s. "They were fighting to keep from having to ride in the back of the bus," says Robyn Olson, 30, who is wheelchair-bound. "We're fighting to get on the bus."
"I grew up in the Philippines, but I was very Americanized," says Navarro. "I remember seeing Martin Luther King on the news, fighting for civil rights. Twenty years later, I realized that I didn't have the protections that other minorities have."
Like black civil rights activists, the disabled have to fight for enforcement of the rights guaranteed in the ADA, says Tessier. "It's not a cure-all," he says. "It's just a tool that people have to empower themselves."
"The civil rights laws of the 1960s didn't end prejudice," adds Olson.