Seabeck Deaf-Blind Retreat

In 1996, Heidi was diagnosed with Usher’s Syndrome. As a result, she was relieved to finally have a diagnosis for what she had struggled with for years. Usher’s syndrome is the major cause of deaf-blindness in the world, with approximately 10 to 20 thousand Americans having the syndrome.

Prior to her diagnosis, Heidi already identified as a Deaf person – meaning, she considered herself culturally Deaf. Her heart already had strong values commonly found in the Deaf community, which she believes helped her develop good health. However, her vision problems confused her, especially when she was younger. Her peers often made fun of her “tunnel vision,” and her tendency to bump into people or things, especially during sports, was labeled as aggression by her teachers, doctors and parents as aggression. During those days (Heidi graduated in 1971 from high school), Usher’s Syndrome was not yet fully recognized and was still new in the medical field.

However, many Deaf people in the community recognized Heidi’s tunnel vision as Usher’s Syndrome, and told Heidi she was in denial about her Deaf-Blindness. But Heidi couldn’t understand this label – didn’t her doctors and parents say otherwise? This confusion caused an internal struggle in believing her friends or her doctors and parents. Eventually, a doctor correctly diagnosed Heidi as having Usher’s Syndrome, and began building a new sense of identity.

Although information and knowledge about Deaf-Blind culture was sparse in those days, Heidi learned about the Seabeck Deaf-Blind Retreat sponsored by the Seattle Lighthouse, a well-reputed agency that had approximately 40 employees with Usher’s Syndrome. Many of Heidi’s Deaf-Blind friends eagerly told her about how wonderful the camp was, and Heidi finally got the chance to attend in 2002.

August 25-31, 2002 were the dates of the camp, and the theme was “Deaf-Blind PAH!” (PAH! Is a slang in American Sign Language that, loosely translated, means “finally!”). With a focus on overcoming barriers and accomplishing goals, Heidi went as a motivational speaker and shared her experiences as an adventurer. Even as a Deaf-Blind person, speaking to the Seabeck Deaf-Blind campers challenged Heidi. She had to make modifications for her visual aids such as her PowerPoint slides, since many of the participants could not see the slides. She decided the best way was to allow the participants to touch and feel her mountaineering equipment. She also had to learn how to work with Deaf-Blind interpreters, and to accommodate various needs, such as staying in one position instead of moving around too much as she spoke, and pausing every 10 to 20 minutes to allow the interpreters and Support Service Providers (SSPs) to alternate.

Another neat aspect of Heidi’s visit was the opportunity to work with the Deaf-Blind campers in a wall-climbing activity. She was inspired to see other Deaf-Blind people share their culture and values with each other, and the experience at Seabeck strengthened Heidi’s identity as a Deaf-Blind person. For more information about the retreat, visit www.seattlelighthouse.org.