Frequently Asked Questions About Deaf-Blindness
Wednesday, February 11, 2009
- Does the word “deaf-blind” mean a person is fully deaf and fully blind?
- How many deaf-blind people are in the United States?
- How do people become deaf-blind?
- What do deaf-blind people do?
- How do deaf-blind people get around?
- What are some common communication methods that deaf-blind people use?
- What kind of technology or equipment do deaf-blind people use?
- Where and how can deaf-blind people learn how to be independent?
- How can I know if I have a vision and/or hearing loss?
- What are some other links and websites I can visit to learn more about deaf-blindness and the deaf-blind community?
No. Most people who are deaf-blind have a combination of vision and hearing loss. They usually have some useful but not always reliable vision and hearing. Some people have little or no useable hearing and vision.
For example, a person may be born deaf or hard of hearing and lose his or vision later in life. Another person may grow up as a blind or visually impaired person and experience a hearing loss later. Some people are born with combined vision and hearing loss, or lose their vision and hearing at an early age.
Two federal definitions of deaf-blindness exist. One is used in primarily in education, and the other in rehabilitation. To read more about these definitions, you can visit The National Consortium on Deaf-Blindness website at http://www.nationaldb.org/ISSelectedTopics.php?topicCatID=6.
A study commissioned by the Department of Education in 1980 estimated that between 42,000 and 700,000 individuals have some level of both vision and hearing loss. See Turkington, Carol, and Allen E. Sussman, eds. (2000). The Encyclopedia of Deafness and Hearing Disorders, second edition. New York: Facts on File, Inc., p.62., cited at http://library.gallaudet.edu/Library/Deaf_Research_Help/Frequently_Asked_Questions_(FAQs)/Statistics_on_Deafness/Deaf-Blind_in_the_US.html.
The National Association of Regulatory Utility Commissions (NARUC) estimates that 70,000-100,000 people living in the United States are deaf-blind. (http://www.naruc.org/Resolutions/People%20with%20Disabilities%20Resolution1.pdf).
About 50 percent of people in the deaf-blind community have Usher Syndrome. This is a genetic condition where a person is born deaf or hard of hearing, or with normal hearing, and loses his or her vision later on in life from retinitis pigmentosa (RP). There are three kinds of Usher Syndrome. If a person has Usher 1, she is born deaf, and starts to lose her vision usually in the teen years. If a person has Usher Syndrome 2, he is born hard of hearing and starts to lose his vision later on. With Usher 3, a person is usually born with normal vision and hearing, or with a mild hearing loss, and start to lose both senses later in life.
Other common causes of deaf-blindness include birth trauma, optic nerve atrophy, cataracts, glaucoma, macular degeneration, or diabetic retinopathy. Some people may be born with both hearing and visual impairments through birth trauma or rare causes such as CHARGE Syndrome or cortical visual impairment. Others may become deaf-blind through accidents or illnesses.
If you would like to read more about the various causes of deaf-blindness, you can check out these links:
- The National Consortium on Deaf-Blindness on Usher Syndrome and Vision
- Boys Town National Research Hospital
- Foundation Fighting Blindness
People who are deaf-blind have a wide variety of both vision and hearing loss. They come from different social, vocational and educational backgrounds. They have many jobs and roles: teachers, professors, counselors, homemakers, agency directors, business executives, government workers, and others. Some have their own businesses. Others are students, and still others are retired.
Deaf-blind people can often travel independently, and/or with family, friends or support service providers (SSPs). Many use public transportation–buses or subways, especially if they live in an area where public transportation is available. They also use paratransit–vans or special taxis, especially if they live in rural areas or in an area where public transit is not available. Some may use car or van pools. Others may depend on family and friends for transportation, or travel on foot if they live within walking distance of where they need to go.
Deaf-blind people use many different ways to communicate. They use sign language (adapted to fit their visual field), tactile sign language, tracking, tactile fingerspelling, print on palm, tadoma, Braille, speech, and speech reading. The communication methods vary with each person, depending on the causes of their combined vision and hearing loss, their background, and their education.
Deaf-blind people use many types of technology and equipment in their daily lives. Examples include mobility canes, closed circuit televisions (CCTV), Braille, Braille TTYs, TTYs with large print displays, and Braille or large print watches or clocks, to name only a few.
Deaf-blind people can get training to learn to become independent. One example is training in orientation and mobility so they can learn to travel independently.
Also, deaf-blind people can take training classes at places such as a local or state rehabilitation agency, or an organization such as Helen Keller National Center (HKNC), a national rehabilitation center for deaf-blind youth and adults.
You can make an appointment with your eye doctor to get your eyes checked. You can also get a hearing test. To get a hearing test, you can see an audiologist or go to an audiology clinic near your home.
What are some other links and websites I can visit to learn more about deaf-blindness and the deaf-blind community?
- Minnesota’s Online Resource
- Helen Keller National Center for Deaf-Blind Youth and Adults
- National Consortium on Deaf-Blindness
Have more questions? Contact the AADB Office.