Warrior for the Disabled : Brenda Premo Fought on the Front Line to Help Win Landmark Rights Bill

Brenda Premo--former teen-age “troublemaker,” longtime activist and now troop commander in the disabled-rights movement--has an appointment on the South Lawn of the White House on Thursday morning.

She will be joining congressional leaders, administration officials and scores of other activists as President Bush signs the landmark Americans With Disabilities Act, a sweeping piece of legislation that protects the physically and mentally disabled from discrimination in jobs, transportation and public access.

As it was being passed overwhelmingly by both houses of Congress two weeks ago, the bill drew the highest praise from Bush and Capitol Hill leaders, who called it the “declaration of independence” for the disabled.

And Premo, like others who have relentlessly sought such legislation for years, admits to being just a little stunned as well as elated by it all.

“Believe me, we have come a long, long way to get here,” said Premo, 38, sitting in her executive director’s office at the Dayle McIntosh Center for the Disabled, an Anaheim-based service and advocacy organization run largely by the disabled.

Premo’s credentials for attending the historic signing are more than appropriate.

An impassioned, outspoken advocate, she is a member of the National Council on Disability, the advisory panel appointed by the President that has been a driving force behind the rights legislation since it was first officially proposed to Congress in 1986.

As executive director of the McIntosh center, a privately operated organization funded with both public and private money, Premo will be playing a key local role in assuring that the new federal law’s provisions--many of which are certain to be controversial--are carried out.

And like so many others with disabilities, Premo--who is legally blind, has albinism and who as a child was considered retarded--can tell stories of a life spent facing enormous odds and combating stigma, ignorance and isolation.

It is not surprising, then, that beneath all the euphoria and ceremonial flourishes of Thursday’s White House signing, activists such as Premo still see a disturbing, even ominous, dichotomy in American society.

“On one hand, we have just passed a monumental bill that says people with disabilities have equal rights, equal protection,” she said. “On the other hand, you still have situations where funds for the most crucial kinds of programs are being cut out from under the very people who are going to get those rights.

“It’s like telling people, ‘That’s OK, we will provide just enough basic services to keep you alive, but we will give you nothing for your dignity, for your independence, for a true quality of life.’ ”

The latest example of such “disastrous cutbacks,” Premo noted, is right here in California.

As a cost-cutting measure, Gov. George Deukmejian had proposed cutting from next year’s budget $5.2 million in previously allocated funds for supporting 25 “independent living centers” for the disabled, the first such cut since the state first helped form the centers in 1979. (Negotiations between the governor and the Legislature are now at an impasse.)

Premo and other directors of the program believed such a cut would be devastating for the still relatively small network. Half of the centers would be closed, they said, and services would be drastically reduced at the others, including the Dayle McIntosh, which would face a 30% cut in its budget for next year.

Although the governor later announced that he was no longer proposing such a cut, the whole incident, Premo said, emphasized the precarious state of many existing programs for the disabled--and also the probable clashes ahead when new programs are established under the new federal law.

“The (rights) act is a landmark victory for us, no doubt about that. But,” Premo added, sounding like someone already gearing up for the next battle, “obviously, we have yet to win the war.”

Long before she formally enlisted in the disabled-rights movement, which she did in her 20s, Brenda Premo was fighting her own private war.

When she was a young girl, Premo said, “they kept me separated in special-education classes. They treated me like I was retarded, like they had nothing but the lowest of expectations for me. The thinking was that only they knew what was good for me.” Premo was born with 10% vision because of her albinism and a damaged optic nerve. She is a Long Beach native who lived in various parts of Los Angeles and Orange Counties as she was growing up.

“My brains aren’t in my eyes. Yet somehow, if you have a disability, they think of you only as someone who is so incapable, so helpless. But I wasn’t going to lie down and give up, and say: ‘OK, system, take care of me. You owe it to me,’ ” Premo said.

By the time she was of junior high school age, and with her parents’ backing, she was finally placed--”mainstreamed”--in regular classes. But because of her combativeness about her schooling, she said, she was labeled a “troublemaker” and a student with a “bad attitude.”

“I wouldn’t conform, that’s why. I had my own thoughts about what I could learn and do. I was saying that I knew some of the things that are right for me, and that, maybe, I could take part in the process of guiding my own life.”

She did well in the mainstream classes, usually reading regular books with a magnifying glass.

She made it to Marina High School in Huntington Beach. “There were three of us there (with severe disabilities). Sure, we were isolated. Sure, there were kids who made fun of me--you know, my white hair, my complexion. But I figured that was their problem.”

Prodded by her speech teacher--”he was one of those at Marina who kept pushing me to the highest expectations”-- Premo became a debate-team star. He and other teachers, she said, encouraged her to go on to Cal State Long Beach, where she got her degree in psychology and helped organize the first services program there for handicapped students.

But when she applied for an office job at the Orange County Department of Education, she said, she was turned down because she didn’t have a driver’s license. “Of course I couldn’t drive. But that didn’t mean I wasn’t qualified for the job. I told them: ‘Hey, I don’t need that license. You don’t drive a desk!’

“I went straight to the affirmative action office. I did a lot of yelling and screaming, I’ll tell you.” Three months later, she was hired. The post: A desk job as a federally paid trainee for a County Department of Education handicapped-services project.

In 1976, when the Orange County Human Relations Commission conducted a “needs assessment” on the county’s disabled, Premo was one of the activists named to the project’s task force.

Three years later, when the Dayle McIntosh Center, backed by a $52,000 grant from the County Board of Supervisors, opened in Garden Grove, Premo was hired as the center’s first executive director. It was a tiny pilot venture, one of only a few in the state.

The center, now based in Anaheim, is currently a $1-million operation serving 1,500 people a year, most of them physically handicapped. State Department of Rehabilitation aides consider it to be one of the best-run centers in the “independent living” network.

The center offers the more familiar services such job assistance, housing and home-care registries, family counseling and workshops on homemaking, shopping and transportation. But it also has built a 40-unit apartment for the disabled in Anaheim and is planning a second one in Irvine; each is underwritten by a $2.5-million federal grant.

The center also has special projects in telecommunications equipment, interpreters in hospital emergency rooms for the deaf, and sensitivity training for law-enforcement officers. And in regard to promoting the rights of the disabled, the center offers a mediation service for clients appealing disability benefits, who have employment complaints and who are involved in other public-agency matters.

If anything, Premo is even more a stereotype-defying role model in her job as the Dayle McIntosh Center’s chief administrator.

She likes nothing better than to immediately clear the air about her sight disability, usually with a quip--”Please, folks, don’t give me anything to read that’s upside down.”

She will quickly demolish any image of helplessness with the ease with which she moves about the center offices, processes reports on her desk computer with the enlarged type and “voice reader,” and gives detailed briefings to visiting dignitaries or at public meetings.

“I love to astonish people, and then,” she said, laughing, “win them over with my charming personality.”

The Dayle McIntosh Center, like all other service and advocacy centers for the disabled, is now mapping out the role it will play in implementing the Americans With Disabilities Act.

“It will be an immense task, because of the sheer scope of the law and the profound changes,” Premo said. President Reagan appointed her to the National Council on Disability in mid-1986, shortly after the advisory panel drafted its first formal plan for far-reaching rights legislation.

The 1990 act will cover an estimated 43 million people with disabilities, about 325,000 of them in Orange County. Covered are people who are grouped in the more familiar classifications for physically or mentally disabled, and also those with histories of physical impairment or who have diseases such as mental illness and AIDS.

The new law reaches far beyond previous federal anti-discrimination legislation pertaining to hiring, housing and public-buildings access for the disabled; it is the most comprehensive yet for opening up employment, transportation, public accommodations and telecommunications to them.

The new job protections are certain to be one of the most disputed. Private employers are required not only to hire the disabled on equal terms, but also to provide them with technological and other on-the-job assistance.

To activists, this is one of its most crucial provisions.

“Like many other minorities, people with disabilities are the last to be hired, the first to be fired,” Premo said. “We’re always on the fringe of all the (job) goodies.”

Premo noted that some of the changes the 1990 act calls for are already in place, especially in California. For example, she said, the state already requires free specialized or supplementary telecommunications equipment for those with speech, hearing, sight or other impairments. In Orange County, the transit district has committed itself to installing wheelchair lifts on all buses by 1991.

The biggest criticism of the new law has come from the private business sector. Many business people say they fear the costs of providing access and other assistance for the disabled will be enormous. They also say the new law could encourage the filing of far more lawsuits by the disabled.

Supporters of the law, however, say it is simply too early to project what the costs or any other of the major effects will be.

“Our center hasn’t gotten any calls yet (from businesses) about the law,” said Premo, whose center plans to expand its role as a consultant to local firms on hiring, access and similar matters. “The law is still too new. The ink isn’t even dry yet.”

Premo also pointed out that such fears about the Americans With Disabilities Act are not really unusual when it comes to the disabled.

“It’s the old three-piece-suit syndrome,” she said, “the focus only on the short-range numbers, not on the long-range rewards. We’re talking about the development of another significant source of good employees, about productivity in both business--and humane--terms.

“Oh, it’s easy to say that you’re in support of these civil rights and that it’s wonderful. But if you have to put $5,000 or whatever in it, then we will see how much support we really have. That’s the next battle, the next challenge.

“When it comes to that kind of real commitment,” she added, “we will see if our souls are where our mouths are.”