Disabled Learn the Best Ways to Rock the Boat : Being Assertive Helps Handicapped Overcome Barriers

It’s a hypothetical supermarket, and not a very hospitable place, but Roger Russell returns to it frequently as an example of the obstacles that disabled people face.

When he does, he always points out that there are no curb cuts for his wheelchair to negotiate, and describes botched remodeling jobs that make the store inaccessible to him, an indifferent store manager and possibly even openly hostile shoppers.

But properly armed with a single effective weapon, the disabled person can begin to turn the market from alien territory into a more familiar, convenient place to buy food, said Russell, who’s a clinical psychologist and a paraplegic confined to a wheelchair.

The weapon is assertive communication and, Russell said, it is a skill that can be learned. Beginning at 7 p.m. Tuesday at Rancho Santiago College in Santa Ana, Russell will explain and demonstrate the technique to other disabled people at the opening session of Project Self-Reliance, a series of eight consecutive Tuesday night workshops sponsored by the Dayle McIntosh Center for the Disabled in Garden Grove.

Funded by a United Way grant, the workshop will cover communication, self-advocacy and self-assertion skills, benefits and legal rights of the disabled, housing, special education and how to lobby for legislation, among other topics. The last session will be a “problem lottery,” during which specific problems of participants will be discussed.

All this, Russell hopes, will help lead disabled participants to understand that their options are not as limited as they may have thought.

“Self-reliance hinges on the ability of disabled people to communicate and assert themselves,” he said. “But they may feel inadequate, and that’s likely to make them feel more disabled than they really are. When they confront any kind of obstacle, physical or otherwise, they can feel depressed, angry, inadequate, hostile--a whole range of responses that keep them from communicating well. Our goal is to get them to a point where the disability doesn’t feel like a handicap.”

A large number of disabled people do not know how to assert themselves effectively, according to Brenda Premo, director of the Dayle McIntosh Center.

“We discussed (Project Self-Reliance) two years ago,” she said, “and we discovered that a lot of problems that people bring to us could be solved by the individuals themselves if they just had the right tools. They didn’t know how to be assertive without being aggressive. They didn’t know how to work with people rather than against them. They didn’t know how the system worked. I would say that 70% of those problems could have been solved with good communication.”

Premo speaks from frustrating personal experience. Severely visually impaired--she has had only 10% of her sight since birth--Premo obtained a bachelor’s degree in psychology from Cal State Long Beach in spite of a struggle with college authorities that began with her difficulties in seeing classroom visual presentations.

Because she and other visually impaired students could not see what was written on the blackboard, they began to tape record lectures. There was opposition from some teachers who, according to Premo, were concerned that the lectures would be transcribed and published without permission. The students persisted, however, she said, and eventually the tape recorders were allowed.

Premo said she was hired as an administrative aide by the Orange County Department of Education in 1975, but only after “screaming at the affirmative action people.” She claimed the stumbling block was the fact that she didn’t have a valid California driver’s license. Because of her disability, however, she has never had one.

“You have to remind people all the time that they’re dealing with a disabled person,” she said. “You can really improve your status if you demand what you need in a professional manner. You have to realize that you can’t scream and cry and rant and rave.”

Still, Premo said, often it is not reluctance to be assertive or lack of communication skills that lie at the heart of a disabled person’s silence or isolation. It is fear.

Until 1980, she said, disabled persons receiving Medi-Cal and Supplemental Security Income payments would have those benefits reduced or cut off completely if they got a job and began to earn more than $300 a month.

“There are often two attitudes disabled people have about that,” she said. “One, you don’t want to help me, and, two, I’m afraid to go to work or even talk to you about it because I’m afraid I’ll be cut off. Nobody wants to rock the boat. It’s scary.”

Disabled advocate Doug Martin, whose talk during the May 20 workshop will focus on benefits for the disabled and changes in Social Security laws, says that today, the boat can stand up to rocking.

“Before 1980, the laws were very restrictive,” he said. “I would call them penalties for people who wanted to be self-supporting. If you got a job that paid you $300 a month, you could be eliminated from a program that may have been providing you with benefits worth $2,000 a month.”

Today, however, as a result of temporary federal legislation that will be in effect at least until June, 1987, a disabled person can earn as much as $1,300 a month without losing Medi-Cal benefits, Martin said.

Also, for a quadriplegic or other severely disabled person who needs attendant care, that care would continue to be provided (locally through Orange County Social Services) as long as a disabled person receives some Supplemental Security Income benefits. If work income reaches $300 a month, SSI benefits, which can amount to as much as $533 a month in California, would be reduced on a sliding scale--$1 less in benefits for every $2 (over $300) earned by the disabled person at a job, said Martin. Likewise, money provided for attendant care would be reduced on the same sliding scale.

There are bills now before the U.S. Senate and House of Representatives that would make this temporary legislation permanent, Martin said.

Martin, a quadriplegic polio victim who is the disability services coordinator for the Culver City Department of Human Services, said many disabled people don’t know about the change in the law allowing them to work and not lose benefits. (Martin himself does not draw SSI cash benefits because of the size of his current salary, but he does continue to receive benefits through Medi-Cal.)

“As a person on the receiving end of these benefits, I know how frustrating it is to deal with the system,” he said. “It’s very complex, and policy decisions over many, many years have been vague or convoluted. Also, disabled people, especially the more permanently or severely impaired, are spending most of their time and energy just dealing with the realities of living--getting up and getting fed--and don’t have much energy left to go out and be advocates. Often they’re not able to get a definitive answer to their questions, so they become reluctant.

“One of the big deterrents to doing more is losing what you have. They (the disabled) don’t want to rock the boat if they don’t know what they’re doing . . . they’d rather do nothing and stay at home than risk running afoul of the programs and losing the services they need.”

Martin himself ran into “a great many snarls” trying to obtain benefits after graduating from UCLA. He needed attendant care and found that he would lose it and his other medical benefits if he took a job that paid more than $300 a month.

“I couldn’t find a job that would pay enough to make up for the loss of benefits. I couldn’t make enough to pay for the attendant care and medical coverage and remain in my own home. I felt like it was a tremendous waste of resources, to have the federal and state government pay millions of dollars to send people to school to get skills and then when they graduate, penalize them so severely they couldn’t afford to go to work.”

A nationally known advocate of the disabled, Martin founded the Disabled Student Union at UCLA and the Westside Center for Independent Living in Los Angeles, one of the largest centers in the country providing information and services for the disabled. He is a member of the UCLA Chancellor’s Advisory Council on Disabilities, the state Council on Developmental Disabilities and the Governor’s Task Force on Aging and Long-Term Care.

Today, Martin said, “I like to tell people that they can even work part-time if they want to without losing everything they have. I’m optimistic about the legislation being made permanent. Today, because of high technology, you can have even a severe disability and still do productive work and be capable in it.”

Meanwhile, back at the supermarket, obstacles in the path of the disabled likely will continue, Russell said. But, he added, skillful disabled communicators often can defuse confrontations, smooth over uncertainty and distrust and, ultimately, get what they want.

“We want to concentrate (in the workshop) on ways to communicate without injury,” said Russell, who was stricken by polio in early childhood. “We want to give people a sense of power but not through aggression. For instance, we’ll tell people to use ‘I’ rather than ‘you’ statements: not ‘You people at the supermarket are real clods for not providing adequate access,’ but ‘I can’t get into your store, and I want to shop here.’ ” Also, he said, disabled people must learn how to deal with different forms of communication that are directed at them, which, in some cases can be indifferent or even hostile.

“The techniques for handling someone like that boil down to ignoring everything the person says and repeating your message,” Russell said. “That doesn’t mean don’t listen. You give the person time to work through the distress they may feel--embarrassment, defensiveness, hostility.”

There also is a hidden obstacle to communication and assertiveness, Russell pointed out, and it masquerades as good will.

“It’s interesting, but you find that most people will say they like and admire those of us with disabilities,” Russell said. “And that positive attitude makes it hard to stand up and object to something. You get swallowed up by all this liking. You’ll hear people say, ‘Hey, don’t bite the hand that feeds you. We like you. I give to Jerry’s kids and everything.’ ”

Russell said he reached his own assertive turning point in college. After a painful adolescence, during which he felt “socially inept and socially invalid,” he began dating and “discovered that a disability was just the shape of the container and not the substance inside.” Today he is married to an able-bodied woman.

For many disabled people, he said, such voyages of independence are something new and possibly frightening.

“How do we feel independent when we have to ask people to do things for us all the time? What you have to realize,” Russell said, “is that you can still be dependent upon others, but you have to depend on yourself to get action, to get things done, even if it’s simply knowing how to ask for help. The more a person does that, the more that person feels self-reliant. They get credit for that.”