Summer 2003

Seattle Lighthouse Q&A

The Seattle Lighthouse leads the nation in employing, training and supporting people who are Deaf-Blind. Deaf-blindness is a low-incidence disability. According to the Helen Keller National Center, about 70,000 people who are Deaf-Blind currently live in the United States. Many people from the community who attend a tour of the Lighthouse have never met a Deaf-Blind person before. Of course, we are delighted to answer any questions our guests might ask. Here are some of the most common things people want to learn about deaf-blindness:

Q: Does deaf-blind mean completely blind and completely deaf?
A: Not usually. It is very common for people who are Deaf-Blind to have some residual hearing, some usable vision, or both.

Q: How do you define deaf-blindness then?
A: One useful definition says that deaf-blindness is a combination of vision loss and hearing loss that prevents access to communication, the environment and people. A person who is Deaf-Blind may or may not have other physical or cognitive disabilities.

Q: What causes deaf-blindness?
A: Many combinations of circumstances can cause deaf-blindness. Accidents, diseases, and genetic conditions may result in both hearing and vision loss. For instance, a person who was born deaf who loses their sight because of a motorcycle accident would be considered Deaf-Blind.

The leading cause of deaf-blindness is a genetic condition called Usher Syndrome. A majority of Deaf-Blind employees at the Lighthouse live with Usher’s. People with this dual sensory disability are typically born deaf and with a degenerative eye disease called retinitis pigmentosa (RP). Symptoms of RP usually appear during the childhood years as night blindness and loss of peripheral vision. This deterioration continues until only a narrow tunnel of central vision remains. Many people with Usher Syndrome experience total blindness as RP eventually eliminates the few degrees of remaining sight.

Q: Why does the Lighthouse capitalize Deaf-Blind but does not capitalize blind?
A: Deaf-Blind is capitalized because it refers to a cultural identity. So, saying that someone is Deaf-Blind is similar to saying that someone is African-American or Navajo. An obvious example of a specifically Deaf-Blind cultural element is the use of American Sign Language (ASL) as a shared means of communication.

A cultural group is defined by shared language, norms, traditions and values. Most people in the United States who identify themselves as Deaf-Blind use ASL as their first language; either visually, using remaining sight, or tactually, by placing their hands on those of someone signing to them. Deaf-Blind people who use ASL do not typically view their inability to hear as a disability or defect. According to the norms and values of their cultural group they lead normal, fulfilling, interactive lives without any need for sounds or spoken language to communicate. On the other hand, when we refer to the medical condition of not being able to see or to hear we write “blind” or “deaf” with a lowercase b or d.

Q: What are the main challenges facing Deaf-Blind people?
A: People with this dual sensory loss live with a lack of access to sights, sounds and information. Some of the major challenges Deaf-Blind people commonly face every day include:
• A need to depend on others, at least to a certain extent, in order to feel safe and stay informed.
• Creating innovative living and employment situations that fit their individual needs, talents and aspirations.
• Attitudinal barriers that complicate interactions with people who aren’t Deaf-Blind.

Q: How does the Lighthouse address these challenges?
A: We don’t address these challenges for Deaf-Blind people. Instead, we strive to create conditions necessary for self-determination of people who are Deaf-Blind. Self-determination means being able to shape your own destiny, establish and reach your own goals and exist fully as a human being in the world.

The Seattle Lighthouse Deaf-Blind Program works hard to address certain aspects of Deaf-Blind self-determination, while other agencies and groups address other areas. One primary focus is employment and the training and support services necessary for Deaf-Blind people to succeed at their jobs here at the Lighthouse. Deaf-Blind people work here as machinists, computer instructors and administrative assistants, among other things.

Training programs include computer classes with special assistive technology, orientation and mobility lessons so that Deaf-Blind people can travel to and from work independently and a variety of job-related skills trainings.

Support services include our own Sign Language Interpreting department, independent living classes and a variety of adapted computer workstations. In addition, the Lighthouse facilitates communication and peer support within the Deaf-Blind community by sponsoring bi-weekly Deaf-Blind community classes and the annual Seabeck retreat.

Q: Who pays for all of this special training and equipment?
A: Deaf-Blind employees at the Lighthouse earn their wages and benefits just like any other employee of a large manufacturer: by working hard and producing high-quality products for customers. Some funding for our training programs and support services comes from the income generated by our business activities. Lighthouse staff members have worked with our Washington State Congressional delegation to obtain two federal appropriations designated to support our Deaf-Blind Program. Some services, like the annual retreat, are funded primarily through community support, financial contributions from local corporations, foundations, service organizations and individuals.

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