DeafBlind Awareness Week 2014 – facts and stories about deafblind people

June 26, 2014 in Advocacy & Access, Community News

 

Greetings from Elizabeth Spiers and Christine Day at the Virginia Department for the Blind and Vision Impaired (DBVI)!

Christine and Elizabeth work within DeafBlind Services at DBVI.  Elizabeth is the Program Director for DeafBlind Services, and works with deafblind people in central and eastern Virginia.  Christine, our DeafBlind Specialist, works with deafblind people in the central and western part of Virginia.

We want to kick off DeafBlind Awareness Week 2014 by sharing with you some fun facts and stories about deafblind people this week.  Please pass this on to anyone who may be interested.

Background

Helen Keller is widely known for her accomplishments as a deafblind individual.  The last week in June is Deaf-Blind Awareness week to honor her birthday on June 27th.  Deaf-Blind Awareness Week started in 1984, when President Reagan declared the last week of June as “Helen Keller Deaf-Blind Awareness Week.” This action was taken as a result of a joint Senate and House resolution, Proclamation 5214 of June 22, 1984.

For more information, people can visit www.hknc.org/DBAproclamationREAGANhtm.  If you have questions or have difficulty accessing the links we provide, please contact us.  Our contact information is below and will be given in each email we send.

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Below is information and a couple of links you can use to learn more about the various causes of combined vision and hearing loss.  If you want more information or have trouble with the links we sent you, please let Christine and me know—our contact information is at the end of this email.    Christine and Elizabeth

DeafBlind Info.orghttp://www.deafblindinformation.org.au/about-deafblindness/causes

Causes

There are many factors that can be attributable to causing deafblindness. Varying degrees of vision and hearing loss may occur:

During pregnancy:

  • a woman may come into contact with a virus or disease that affects the growing foetus
  • an inherited condition or syndrome may be passed on to the child
  • a chromosomal disorder may occur during the foetus’ early development
  • injury affecting the foetus whilst in utero

Complications at birth (multiple health and physical conditions may also be present):

  • a child may be born prematurely
  • neurological conditions as a result of a traumatic birth or lack of oxygen

Postnatal/childhood:

  • inherited conditions that may present during developmental stages
  • auto immune conditions
  • illness cause by virus or disease
  • injury to the eyes and ears
  • acquired brain injury

Young adult to older age:

  • inherited conditions or syndromes that present later in the person’s life
  • non-hereditary conditions and syndromes
  • auto immune conditions
  • illness cause by virus or disease
  • injury to the eyes and ears
  • acquired brain injury
  • the ageing process

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The American Association of the Deaf-Blind (AADB) is a national consumer advocacy organization of, by and for people who are deafblind (this describes people with all types and degrees of combined vision and hearing loss).  It has published some FAQs about deafblind people, available at the link below.  People can also check the website for additional information on AADB and its activities.  We  have also copied and pasted the information for anyone who has trouble accessing the link.    Elizabeth and Christine

http://www.aadb.org

Frequently Asked Questions About Deaf-Blindness

Does the word “deaf-blind” mean a person is fully deaf and fully blind?

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.

How many deaf-blind people are in the United States?

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 athttp://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).

How do people become deaf-blind?

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:

What do deaf-blind people do?

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.

How do deaf-blind people get around?

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.

What are some common communication methods that deaf-blind people use?

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.

What kind of technology or equipment do deaf-blind people use?

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.

Where and how can deaf-blind people learn how to be independent?

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.

How can I know if I have a vision and/or hearing loss?

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?

If you have any questions or would like to get more information, contact us below:

Elizabeth Spiers
Program Director, DeafBlind Services
Virginia Department for the Blind and Vision Impaired
397 Azalea Avenue
Richmond, Virginia 23227
804-325-1282 Voice/Videophone
804-371-3133 Voice/TTY
804-371-3390 Fax
Email:  elizabeth.spiers@dbvi.virginia.gov

Christine F. Day, MA
DeafBlind Specialist
Virginia Department for the Blind and Vision Impaired
Staunton Regional Office
1076 Jefferson Highway
540/332-7788 v
540/292-1621 cell
540/332-7729 v/t
Email: Christine.day@dbvi.virginia.gov