Center Offers the Partially Sighted Lessons in Coping
They are an unusually cheerful group, these patients of the Center for the Partially Sighted in Santa Monica.
Some, in addition to serious vision problems, carry an extra burden: injury from accidents, major physical diseases, family and financial problems. All have experienced the emotional depression that failing sight almost invariably means.
Much of the credit for their good cheer, they insist, goes to the center and its emphasis on how much the person can still see rather than how much vision has been lost.
“Here we never speak of ‘blind.’ We speak of ‘low vision’ or ‘partially sighted,’ ” said Sam Genensky, himself legally blind, who founded a facility in 1978 to offer low vision services. It became a department of the Santa Monica Hospital Medical Center, then in 1983 a not-for-profit independent entity as the Center for the Partially Sighted.
Nobody knows more about loss of sight than Genensky: “I have had no vision since I was one day old. I have bad burns from medication wrongly put in my eyes just after birth. I have no vision in my left eye and 20/1,000 in my right eye.”
According to legal definition, Genensky is blind. But not to hear him talk about it.
“I use binoculars to find out the number of a bus or to see if the signal is red, yellow or green,” he said. “I have glasses with a small telescope on the outside of the lens, and I read and write on a computer screen that enlarges print.”
Despite his vision problems, Genensky earned a doctorate in mathematics at Brown University, worked at Rand Corp. as a mathematician and got into designing computer programs for people with severe vision problems. He began to work with the partially sighted, whom he defines as “those who, with the help of glasses or contact lenses, are unable to read a newspaper column 10 inches to 16 inches away from their eyes. They can see more than light and the direction light is coming from and sometimes shape and form and a little bit of color.”
By his own admission, Genensky has an advantage over his patients when they resist the center’s program or seem to pity themselves.
“When I talk to a patient they can’t say to me ‘You don’t understand,’ ” he said.
He estimated there are 2 million partially sighted persons in the United States and more than 120,000 in Southern California. One in five is legally blind but three-quarters of those are at least partially sighted, he said: “Most ‘blind’ people are not blind; they are just so labeled.”
The Center for the Partially Sighted, 919 Santa Monica Blvd., has a projected budget for 1987 of $956,000. Funds come from grants, the state Department of Rehabilitation and other governmental entities, support groups and from patient fees and the sale of vision aids.
Patients are charged for services on a sliding scale of zero to $132 for six months of visits, said center psychologist LaDonna Ringering. The cost for visual aids range from about $20 to $600, depending on the device involved. Some costs are picked up by Medicare, the state Department of Rehabilitation and private insurance plans.
The center offers complete optometric services--glasses, special equipment and visual aids tailored to the individual’s needs--along with psychological counseling, family therapy, support groups and instruction in independent living skills. Of these, 65% are optometric services.
“We offer low-vision visual examinations to determine functional visual capability, that is, what the patient can do,” Genensky said. “The ophthalmologist tells us the pathology of the patient. We supplement that with services to assist the patient in continuing functioning.
“This allows the doctor to prescribe low-vision visual aids. We train patients in their use to determine if they can use a particular aid.”
The center staff includes two full-time and two part-time psychologists. The full-time psychologists are specialists also in gerontology, since 71% of the patients are between 60 and 75. They provide individual and family counseling and work with the support groups and volunteers who maintain contact with the patients.
Phyllis L. Amaral, who holds a doctorate in both gerontology and clinical psychology from USC, directs the peer counseling program.
“There are nine peer counselors--people who themselves are partially sighted--who make phone calls weekly to those who can’t get here,” she said. “There are six who greet new patients in the waiting room, offering reassurance from someone who has gone through the same thing. We also have four in a speakers bureau who talk at schools, service groups, medical auxiliaries and retirement and convalescent hospitals.
“We have support groups for older adults that meet weekly. Most of these people have become partially sighted suddenly and within the last five or six years. They can talk about frustration, how to do practical things such as meeting new people when they can’t see them and they do recreational things like going to the Hollywood Bowl together.
“Another support group is for patients whose vision problems stem from diabetes. There are lots of support groups for diabetic patients in this area and we try to refer them according to what they are able to do. The visual aids can allow people to draw their own insulin, for example, and we offer cooking skills to help diabetics stay in control of their diet.”
Amaral said that 35% to 37% of the patients live alone. Center representatives will go into homes and help organize the residence to meet the partially sighted person’s needs. One of the services, for example, is marking ovens and thermostats so that patients can read the temperatures.
“They really help with independent living,” said Bobbie Lane, 44, whose visual problems stem from an auto accident and diabetes. She also has glaucoma. Although her youngest daughter lives with her in Baldwin Hills, Lane found the diabetes and independent living support groups especially helpful.
“Sharing the experience of being partially sighted has helped the most,” she said. “But through the independent living program someone came out to train me to use a cane and to arrange my house, my closets. I have enough sight in my left eye to do these things, and, with the help of a magnifying device, I can measure my own insulin.”
“One reason we started the independent living program is that many of these people have stable eye conditions; they will not get better or worse,” Amaral said. “People really want to use their eyes if they can. They want to stay as independent as possible.”
For Sanya Starr of Long Beach, 22, who has had multiple sclerosis since she was 17, that meant moving into her own apartment. Her mother and boyfriend help with grocery shopping.
‘Wanted to be Independent’
“I’ve been coming to the center since 1983,” she said, “and the biggest difference is that because of the people here I have an apartment. I always wanted to be independent. Plus, with my closed circuit television, there isn’t anything I can’t read.”
Starr plans to audition for a performing arts theater for the handicapped--a word she dislikes.
“I am not handicapped and I’m not disabled,” she said. “I’ve got a challenge.”
Devoted volunteers who are themselves partially sighted include Lillian Hiecke, 73, and Harold Jaeger, 79, both of whom, despite their youthful appearances, have age-related maculopathy (until recently called “macular degeneration”). Hiecke works as a telephone peer counselor and in the speakers bureau; Jaeger is a waiting-room counselor to new patients.
Hiecke, who lives with a friend in Bel-Air, stressed the new mental outlook she gained at the center.
“You can live partially sighted,” she said. “There’s a whole world out there, and I guess I like life. This center is like home, always with a hand out to help and support people. They took a depressed me and made a new person of me.”
Jaeger first came to the center in 1980: “One morning I went out and got the newspaper and all I could see was the masthead.” He wound up at the center where he found an approach different from previous ones he had encountered.
“The ophthalmologists said, ‘There’s nothing we can do for you.’ That did not mean that nothing could be done,” Jaeger said. “The center showed me what could be done.”
Classified as legally blind, Jaeger uses magnifiers and closed circuit television for close work and binoculars for distance viewing. He has become so sight-oriented that three days a week he rides his bicycle a mile from his Santa Monica home to the center to serve as a waiting room counselor.
“Sometimes a person here for the first time will say to me, ‘Don’t tell me you understand when you haven’t been there,’ ” he said with a smile. “Some come in with unreal expectations; they think somewhere there is a magic bullet that will restore 20/20 vision.
“It (loss of vision) leads to severe depression. But you have to be ready to get off the floor and work your way out of it.”