‘Independent Living’: State Official Is Showing the Way : Government: Rehabilitation chief works to free the disabled, such as himself, from society’s limitations.
William Tainter, the California Department of Rehabilitation’s director, is showing off his modified state car, which he can start with his toes, shift with his knee and steer by foot with a gadget attached to the floor.
“Even though it looks like I can’t do a lot with my hands, with the combination of hands and feet I can do a lot,” he says. Tainter is talking about life in general since polio ravaged him as a teen-ager.
A pedestrian seems shocked by what he sees: A 49-year-old man, his body leaned back, driving a titanium-colored Taurus with no hands on the wheel and a respirator hose clamped in his mouth.
But Tainter knows only too well how to use the surprise to drive home what, by now, seems like a well-worn point: People with severe disabilities must be set free, especially from the prejudices of society.
Over the years, Tainter has become a symbol of that philosophy--known as “independent living"--as a student activist and later while serving as director of the Community Service Center for the Disabled in San Diego, a nonprofit group aimed at helping people with disabilities become self-sufficient.
And along the way, he impressed a former mayor named Pete Wilson--who, as governor, appointed Tainter in April to lead an obscure, 2,000-person departmental backwater in the sprawling state government.
“He’s a very articulate advocate. . . . He has great humor, great dignity and a great deal of intellectual honesty,” Wilson said. “I think he is an extraordinary role model for those who are disabled and those who are not,” the governor added. “He demands performance from both.”
Tainter proved the point dramatically last week, when he filed a lawsuit in Sacramento Superior Court against United Airlines for keeping him off a flight from San Diego to Chicago because his portable respirator had a gel-cell battery believed to contain “hazardous” material. Tainter is demanding $250,000 in emotional damages from the airline and the Arlington, Va., travel agent who booked the flight.
In a less-publicized episode, Tainter distributed pamphlets to state Health and Welfare Agency department chiefs so they will correctly refer to people with disabilities. The crux: “Emphasize the person rather than the disability”; avoid terms such as “cripple,” “gimp,” “victim” and “invalid.”
Tainter, who undergoes dialysis three times a week because his kidneys shut down three years ago, says terms such as those are part of the rhetoric that causes people without disabilities to “focus on limitations.” And he brooks no pity, whether it is found in telethons, newspaper headlines or among disabled people themselves.
Not everyone has been pleased with Tainter’s go-for-it style since Wilson appointed him to the $99,805-a-year job. Tainter acknowledges there is some internal resistance in the $265-million agency to his plans for hiring more people with disabilities in top slots, passing over some non-disabled administrators who have long seniority.
And there is the nagging feeling among some that Tainter favors the physically disabled over people with mental or sensory disabilities--a fear that broke into rancor this summer after he disclosed plans to close the Orientation Center for the Blind near Berkeley because of a proposed $5-million budget cut at his agency.
“I just think he really tried to create a fiasco and he used the blind for the brunt of it,” said Sharon Gold, president of the National Federation of the Blind of California. “I think that’s unfortunate.”
Yet it worked. Tainter leveraged the outcry and talked Wilson out of any reductions, and the center remained open for this year.
Another large deficit for the coming year, however, probably means Tainter will end up presiding over reductions in his own department.
The youngest of eight children in his family, Tainter had contracted an unusual case of polio in 1955, when he was 13. The disease attacked his torso, leaving his arms mostly paralyzed and greatly restricting his breathing ability. Unlike most polio patients, he could walk.
Doctors eventually fused his spine so he could sit upright; he needs a respirator to force air into his lungs through a mouth hose during the day, and a tracheal tube during the night.
At an early age, Tainter decided his physical limitations were not going to hamper his intellectual development. He graduated in 1969 with a B.A. in psychology from San Francisco State University and earned a master’s degree from San Jose State University in 1976.
But it was another kind of education that would shape Tainter’s life, the education of doing. The student activism that breathed life into the anti-war, civil rights and feminist movements also galvanized the disabled community on some campuses.
The rallying cry was “independent living,” and students such as Tainter saw themselves as another class of society that had to deal with discrimination. They began demanding reserved parking, barrier-free buildings and lists of personal attendants--government-paid workers who would come to their homes to prepare their food and help them get dressed.
“It was the Dark Ages, compared to now,” said Ray Zanella, another San Jose State student who enlisted Tainter in the struggle.
A UC Berkeley student named Ed Roberts became a godfather of sorts in the movement when he started the first “independent living” center in 1972. The idea was to help disabled students in the community. Roberts and Tainter had first met as youths in the 1950s at a San Leandro hospital when they were both being treated for polio.
In 1976, Tainter and Zanella moved to San Diego and followed suit--thanks to an $80,000 government grant from Roberts, who had been named state rehabilitation director under Gov. Edmund G. (Jerry) Brown Jr.
The goal was to get people with disabilities out of the institutions, into their own homes, in touch with personal attendants and placed at high-paying, high-impact jobs. Tainter and Zanella reasoned that their clients would help change public attitudes as they became “taxpayers, instead of tax-users.”
Wilson invested heavily in Tainter’s dream. The San Diego facility now has a $1-million annual budget and a 30-person staff, serves about 1,600 clients a year and boasts a self-supporting business selling equipment such as wheelchairs.
Eventually, Tainter became the center’s full-time director, polishing a flair for no-nonsense public relations. He sent educators out to local classrooms with slide shows to demystify the issue of disabilities. All the while, friends said, Tainter has always been keenly aware of the impression his own appearance makes.
“People stop and look at this guy, who looks kind of skinny at first, and they think, ‘What in the world is this guy going to be able to do?’ ” said Elizabeth Bacon, director of disabled student services at San Diego State University. “Then they start talking to him, and they find out.”
Said Tainter: “You just get in their face and start talking about what your mission is and what you represent. It’s pretty hard to ignore me. If I have to, I sit outside of their office and wait for them.”
But it would be his friendship with Wilson and his wife, Gayle, that would bear the greatest political fruit.
After Wilson left for the U.S. Senate, Tainter persuaded him to become one of the first Republican co-authors of the Americans with Disabilities Act, the federal civil rights bill for people with disabilities. Involved in Wilson’s political campaigns, he made sure the gubernatorial hopeful was within viewfinder range when Vice President Dan Quayle toured the center last year.
Meanwhile, Tainter had to battle yet another severe disability after his kidneys shut down in 1988, leaving him prone to fatigue. Along with undergoing dialysis, he takes a drug that enhances the production of red blood cells.
“I thought that that would totally debilitate me and cause me to lose my job, only to find the opposite, that I end up as rehab director,” Tainter said.
The task, he says, is to transform a relatively obscure department that has been increasingly criticized by its clients for not doing as much as it could to help those with serious disabilities.
Tainter said his goal is to reorient the department so it will begin sending clients to college, instead of trade schools or into entry-level jobs that evaporate in only a few months. He wants to develop some “leaders who go into the private sector and hopefully open up the private sector” to hiring more people with disabilities.
As he reflects on this, Tainter steers his car with his left foot, which he slips into a boot of sorts built into the wheel. The car also has been modified to include an electric ignition mounted under the radio.
And what about the stares?
“I get them so often I don’t even notice anymore,” he says, zipping around another corner.
Times staff writer Daniel M. Weintraub contributed to this story.