A Sense Of Themselves -- A Photographic Portrait Of Seattle's Deaf- Blind Community By Karen Ducey, Special To The Seattl Times

For deaf-blind people, touch, smell, taste and thought define life.

Without some way to connect these senses to the greater community, access and autonomy can be frustratingly elusive.

In Seattle, one of the nation's largest deaf-blind communities has grown up around access to services - transportation, translation, employment, training - allowing autonomy to be a choice of degree. Seattle is one of only a handful of deaf-blind community clusters nationwide. The array of available services makes the Seattle area a mecca of sorts for the deaf-blind.

Seattle's community flourishes in part because a core cluster of deaf-blind people were here to foster the development of essential services, explained Seattle's Dorothy Walt, regional representative for the Helen Keller National Center. Walt, who earned a master's degree in rehabilitation counseling for the deaf from Gallaudet University in Washington, D.C., is the center's first regional representative who is also deaf-blind.

The 81-year-old Seattle Lighthouse for the Blind hired its first deaf-blind employee in 1972 and has continued to augment support and training. The Deaf-Blind Service Center in Seattle also provides information, help with problems and service providers.

Helen Keller Awareness Week begins today, the 119th anniversary of her birth. For some deaf-blind people, as for Keller, daily assistance remains paramount. Others prefer the term Deaf-Blind Awareness Week, seeking help for specific errands, preferring to navigate much of their world themselves.

Within the community, the deaf-blind experience ranges from totally deaf and blind to extremely limited degrees of sight or hearing. People who are deaf-blind also develop language differently, everything from spoken English to tactile American Sign Language (ASL).

Most deaf-blind people were born with one or both of these senses and lost them through age, brain injury, illness or a genetic disorder called Usher's syndrome. It is this latter group who have helped give Seattle its reputation as a unique deaf-blind community.

Today, we tell a story of this community in photos - taken by Karen Ducey, a Seattle freelance photographer. Part of her work was supported by a grant from the King County Arts Commission's Special Projects Program.

------------------------------- Some local resources:

Deaf-Blind Service Center, Seattle. 206-323-9178 (voice and TTY)

Helen Keller National Center. Northwestern regional office, Seattle. 206-324-9120 TTY: 206-324-1133

Seattle Lighthouse for the Blind. 206-322-4200 TTY: 206-324-1388

Washington State Services for Children with Deaf-Blindness, Seattle. 206-439-6937 or 800-572-7000 (voice and TTY) TTY answering machine: 206-439-6966

For more information, contact DB-LINK at 800-438-9376 or 800-854-7013 (TTY) or check out http://www.tr.wou.edu/dblink

"At Their Fingertips," a documentary profiling three local deaf-blind people with Usher's syndrome, will be shown at 4, 7 and 9 p.m. today on TVSEA.

A sense of themselves -- A photographic portrait of Seattle's deaf-blind community by Karen Ducey, Special to The Seattle Times.

Scott Bass:

Scott Bass maneuvers his way along a downtown Seattle sidewalk. Bass has Usher's syndrome 1, a genetic condition that causes deafness at birth and a loss of peripheral vision with age. Over time, this tunnel of vision closes in, leading to total blindness. Scott lost his sight at 23. He taps sidewalks and the sides of buildings - called trailing - for guidance, often having to maneuver around people to get where he's going. Bass works full time and lives and travels independently.

Polly Mansfield

During a visit by members of London's deaf-blind community, Cliff Marcus, a local hearing and sighted volunteer, speaks with Polly Mansfield, right, during a boat trip on Puget Sound. In the foreground are visitors from London with whom they are trying to communicate. Deaf-blind people around the world speak various sign languages through fingertips into the palms of the receiver's hands. The community here is trying to raise funds for interpreters and other helpers to visit the London deaf-blind community in 2000. As a child, Mansfield met Helen Keller, who helped her to attend Perkins School for the Blind in Massachusetts, Keller's alma mater.

Joseph Cancela

Donna Ruble, of Seattle, makes loud, rhythmic sounds into her son Joseph's ear, hoping to make him laugh. Totally blind since birth, Joseph Cancela, now 4, was detected with moderate to severe hearing loss at age 1 1/2 and classified as deaf-blind. "The routines become exasperating," Ruble said. "When you're trying to teach him something you repeat it over and over and over again, in exactly the same way you've done it before, using the same repetitiveness, the same body movements and your same true emotions - sometimes for years. He is incredibly intuitive through his sense of touch. He instinctively knows your mood, your strength and your willingness. You can't reason with him. He doesn't understand concepts, so you rely on routine."

Robert Steppler

Robert J. Steppler, center, who is deaf-blind, joins other people who are deaf-blind and their interpreters in applause at one of the deaf-blind community classes held biweekly at Seattle Central Community College. In the hearing culture, people clap to give applause. In the deaf culture, people wave their hands in the air, and in the deaf-blind culture, people wave their hands and stomp their feet to create vibrations.

Drew Vernon

Damian Forkner, an aide, teaches Drew Vernon, 4, how to recognize shapes. Vernon, who is deaf and legally blind, is in the deaf and hard-of-hearing preschool classroom in the Bethel School District. All deaf-blind children who enter public schools are required to have an aide with them at all times. Parents can send their children either to the state blind or deaf residency schools or enroll them in public schools. The state schools, in Vancouver, Wash., offer children interaction with the deaf or blind cultures. The public schools foster more family time.

Mary Polly Easlye

"Sometimes I'm afraid I'll wake up and not be able to see anything at all," said Mary Polly Easley. Considered legally sighted just a year ago, Easley, who has Usher's syndrome 1, was born deaf and has rapidly deteriorating vision. She can no longer drive, has trouble balancing and fears losing her independence, privacy and opportunities for employment. She regularly exercises with rocks or at home with weights to practice keeping her balance. "I'm frustrated with having to slow down. My way of adapting is to say that I'm just entering a different dimension of reality."

Morgan Trewin

Despite the challenges of raising a deaf-blind son, Morgan, 10, "there are so many benefits to having a special-needs child," said Scott Trewin of Bellevue. "He is almost a pure spirit, not tainted or slanted from advertising or other people's thoughts. He is purely himself when he talks (by signing) and he gets pure enjoyment from life and cooperation with his family. He does not understand the concept of lying - he says exactly what he wants."

David Pyle

When David Pyle goes swimming each week as part of the Highline Community access program, he floats - sometimes for the entire session. Born deaf and legally blind, David, 32, has no ASL language skills but communicates through gestures and symbols. In the water, he experiences what hydrotherapists call "body awareness," a realization of his physical nature. David attended the Washington State School for the Blind, then entered the Seattle School District's deaf-blind program. He lives with a roommate in an apartment with 24-hour support services.

Robert Blumenau

An airline attendant worries that Robert Blumenau, a frequent traveler who is deaf-blind, can't safely use an escalator that is part of a route he's memorized. She wants him to take an elevator instead, a change that would confuse him. She also isn't aware that Blumenau can't hear her, which further complicates their interaction. Blumenau, who lives in seattle, carries a black marker and paper to communicate with sighted and hearing people. He has a narrow tunnel of vision, similar to looking through a straw.

Roy Rios

Medical staff and interpreters guide an excited Roy Rios in cutting the umbilical cord of his new daughter, Shanice R.J. Morgan-Rios, who was born nearly three weeks ago. "I hope my baby is not born deaf-blind with Usher's syndrome, like me," said Rios, who is deaf-blind and has three other siblings with the disease. Usher's is hereditary; there is no treatment or cure. Rios already has a son, who was born without Usher's. Tests show his new daughter is able to hear. Doctors will test her later to determine whether she has any vision problems.

Janie Smith

Janie Smith, from Port Orchard, holds up a card requesting help crossing the street. Generally, she says, it's easy to get around in Seattle. People help. But sometimes, she says, it can be a little scary. If someone "smells stinky or has whiskey on their breath," she won't let them guide her. She says she is most trusting of people who wear perfume or cologne. Janie travels independently with her guide dog, taking a ferry and two different buses to get to the Seattle Lighthouse for the Blind.

Jackie Engler

David Miller, orientation and mobility trainer for the Seattle Lighthouse for the Blind, teaches Jackie Engler, 33, of Renton, her bus route so she can travel by herself. Engler, president of Washington State Deaf Blind Citizens, has Usher's syndrome 1. She was born deaf and eventually will lose all of her sight - but not her independence.

Karolanne Elliot

Karolanne Elliot is awakened by a staff member at Daybreak House on Queen Anne Hill, a group home for deaf-blind adults with development disabilities. Elliot identifies people by rubbing their thumbs and smelling them. She lives with three roommates at Daybreak, and, like them, receives round-the-clock help with everything from cooking and housekeeping to health needs. Elliott works at the Seattle Lighthouse for the Blind.

Gregory Masten

Gregory Masten knows his kitchen. He knows that there are stacks of cardboard boxes on a shelf that he can throw all over the floor. The game is to find them. Though he can walk, he crawls along the floor using his head to balance and feel, and his hands as eyes, like antennae. When he bumps into the refrigerator or a wall, he knows he has to turn. Gregory is 7 1/2, deaf-blind and lives with his family in Lake Stevens.