Seattle photojournalist Karen Ducey | news and documentary photographer

Photo Stories: • Seattle's Deaf-Blind Community

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 the nation's largest deaf-blind communities has grown up around access to services-–transportation, employment, and training–providing autonomy to be a choice of degree. It has become a mecca of sorts for the deaf-blind. For some deaf-blind people, as for Helen Keller, daily assistance remains paramount. Others prefer 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. 

  • 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 the nation\'s largest deaf-blind communities has grown up around access to services- transportation, employment, training -allowing autonomy to be a choice of degree. It has become a mecca of sorts for the deaf-blind.  For some deaf-blind people, as for Helen Keller, daily assistance remains paramount.  Others prefer 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.Donna Ruble makes loud rhythmic sounds into her son Joseph's ear, hoping to make him laugh.  Born totally blind with moderate to severe hearing loss, his mother says “He is incredibly intuitive through his sense of touch.”  “He instinctively knows your  mood, your strength, and your willingness.”
  • A local volunteer speaks with Polly Mansfield using tactual American Sign Language during a boat trip for deaf-blind people on the Puget Sound.  Deaf-blind people  around the world speak various sign languages through fingertips into the palms of the receiver’s hands. As a child, Mansfield met Helen Keller, who helped her attend Perkins School for the Blind in Massachusetts, Keller's alma mater.
  • Scott Bass manuevers 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 manuever around people to get where he\'s going.  Bass works full time and lives and travels independently.
  • Ashley Jess, a 10 year old who has been deaf and blind since birth, prefers to sleep on the couch at night, unaffected by the television her grandmother watches. Her mother says of her life with Ashley, “With a deaf- blind child you are forced to stop, listen, see, and feel things. You’d be amazed at what you learn.”
  • {quote}Sometimes I'm afraid I'll wake up and not be able to see anything at all.{quote} 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 excerisizes with rocks at the beach to practice keeping her balance. {quote}I'm frustrated with having to slow down. My way of adapting is to say that I'm just entering another dimension of reality.{quote}
  • When David Pyle is taken swimming each week, he floats- sometimes for the entire session. Born both deaf and legally blind, David, 32, never acquired any tactual ASL language skills. In the water he experiences what therapists 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 roomate in an apartment with 24-hour support services.
  • “Puh!  Puh!  Puh!”  says audiologist Julia Hayes into the palms of Joseph Cancela’s hands. She is trying to teach him where sounds come from...that he is not alone and that other people can make noises too.
  • Robert J. Steppler (center) who is deaf-blind joins other people and their interpreters in applause at one of the deaf-blind community classes held biweekly. 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.
  • Despite the challenges of raising a deaf-blind son, Morgan,10, “there are so many benefits to having a special-needs child.” says Scott Trewin. “He is almost a pure spirit, not tainted or slanted from advertising 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.{quote}
  • Drew Vernon,4, who is deaf and legally blind, learns shapes  from his aide in his deaf and hard-of-hearing preschool class.  Most deaf-blind children who are in the public schools have aides with them at all times. Parents can enroll their child in the State Deaf or Blind Schools or mainstream them in the public schools.
  • Stefen Hudson,(left) age 14, and his family moved  to Vancouver from Seattle so he could attend the Washington State School for the Blind. His best friend is Vaughn Brown (second from left),11, the only other deaf-blind student at the school.  Many parents send their children to the state deaf or blind residency schools to foster the child\'s social interaction within the deaf or blind cultures.
  • Janie Smith holds up a card requesting help crossing the street. Generally, she says, its 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 is most trusting of people wearing  cologne or perfume. Janie travels independently with her guide dog, taking a ferry and two different buses to get to the Seattle Lighthouse for the Blind.
  • Gregory Masten, 7 1/2, knows his kitchen. He knows that there are stacks of cardboard boxes on a shelf that he can throw all over. 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.
  • An airline attendent 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 carries a black marker and paper to communicate with sighted and hearing people.  He has a narrow tunnel of vision, similiar to looking through a straw.
  • An interpreter teaches a deaf person who is losing her sight to Usher’s Syndrome 1 how to take a metro bus.
  • Anyone can communicate with the deaf-blind using a method called print- on-palm which is spelling words into their hand.
  • Kristina Lasieka and Raymond Gloede live at the Daybreak House, a group home for deaf-blind adults with developmental disabilities. They live with 2 other roomates at Daybreak, and, like them, receive round the clock help with everything from cooking and housekeeping to health needs.
  • Pam Warren, fully deaf-blind, recently moved to Seattle.   Never having lived  independently, Pam became a prisoner in her own apartment. She receives dinner from a concerned person who communicates by spelling words into her palm.
  • At a retreat for Parents and Families of Children with Deaf-Blindness sibblings of deaf-blind children and their parents come together to talk and participate in scheduled activities with their deaf-blind child.
  • A waitress talks to patrons at the Rajin Cajin, a downtown Seattle restuarant owned by Danny Delcambre who is deaf and legally blind.
  • Singing at church in Seattle
  • At the Rajin Cajun, American Sign Language students can mingle with the deaf-blind clientele who frequent there.  Two excellent sign language schools in Seattle provide many student/volunteers within the community.
  • Jenne Parada, who is deaf and legally blind from Usher’s Syndrome 1, greets friends at the Deaf Comedy Jam in Seattle. It took her a long time to accept her deaf-blindness, but now, despite the fact that she will eventually be totally blind, Jenne was recently married and had a baby.
  • Medical staff and interpreters guide an excited Roy Rios in cutting the umbilical cord of his new daughter, Shanice Morgan-Rios. {quote}I hope my baby is not born deaf-blind with Usher's syndrome, like me,{quote} said Rios, who is deaf-blind and has three other siblings with the disease. Usher's is hereditary, there is no trreatment or cure. Rios already has a son, who was born without Usher's. Tests show that his daughter is able to hear. Doctors will test her later to determine whether she has any vision problems.
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