By: Todd R. Olsen

 

 

ORIENTATION TO

DEAF-BLIND

 

Deaf-Blind is the existence of a dual sensory impairment of the auditory and visual senses. The term can be represented as ‘deaf-blind’, ‘deafblind’, ‘Deaf-Blind’, ‘Deafblind’, ‘deafblindness’, ‘deaf-blindness’. Most people agree that ‘deaf/blind’ is not acceptable because it appears to denote ‘deaf’ or ‘blind’. The term ‘dual sensory impairment’, when used alone without explanation, is also less acceptable since it appears ambiguous.

The term deafblind can apply to a wide range of individuals. It can range from an individual with mild auditory and vision loss to someone born completely without hearing and sight. Medically speaking, a visual impairment consists of corrected visual acuity poorer than 20/70 in the better eye; restricted visual field of 40 degrees or less in the better eye; or lack of response to visual stimulation. The medical definition of an auditory impairment is hearing loss in the better ear, with an aided device, of 26 dB HL (decibels) or poorer or lack of response to audio stimulation.

Some individuals are born completely deafblind, while most others are not. It is more common to be born with one sensory loss and then develop the second as the person ages. In other situations, a person can be born with no sensory impairments, but acquire them through an accident, illness or genetics. This is usually referred to as adventitiously or postnatal deafblind; while conditions appearing at/or before birth would be called congenitally or prenatal deafblind.

There are over 70 known causes of deafblindness. Some of the syndromes that cause deafblindness include:

Usher’s I, II, III

Down’s

Goldenhar

Hunter

Hurler

Marfan

Refsum Stickler

Treacher Collins

Turner

Waardenburg

Batten Disease

Norrie’s disease

CHARGE Association

Leber's’congenital amaurosis

Prader-Willi

Some of the pre/post-natal conditions include:

Congenital Rubella

Congenital Syphilis

Hydrocephaly

Maternal Drug Use

Micorcephaly

Asphyxia

Encephalitis

Infections

Meningitis

Severe Head Injury

Stroke

Tumors

Congenital Toxoplasmosis

Cytomegalovirus (CMV)

Fetal Alcohol Syndrome

Neonatal Herpes Simplex (HSV)

 

Of all the possible causes, Usher’s Syndrome and Congenital Rubella appear to be the major contributors to deafblindness.

Usher’s Syndrome is a genetic condition that combines hearing loss and retinitis pigmentosa (RP). RP is a gradually progressive eye disease that narrows the vision until only the center of the sight remains. The result is called ‘tunnel vision’. There are three types of Usher’s Syndrome. Type I, the individual is born profoundly deaf, has significant night vision difficulties and has balance problems. Type II, has a moderate to severe hearing loss, and no balance problems. Type III, are born with either no hearing or a mild hearing loss, persons may have night vision difficulties and some balance problems. Usher’s Syndrome is estimated to affect about five percent of the Deaf community.

Rubella, also called German Measles, is the other major contributor to deafblindness. Rubella is a virus that is contracted through an infected person’s throat and nasal secretions, such as coughing and sneezing. If a woman is exposed to Rubella during the first trimester of pregnancy, the likelihood of her baby having a birth defect, such as deafblind and/or developmentally disabled is extremely high.

There is a lot more to being deafblind other than the above etiology. Over 70,000 people in America are deafblind. This leads to the question of culture and community.

How people who are deafblind identify themselves depends on whether they were deaf or blind first. Usually, if the person becomes blind first, they join the blind community and the American mainstream culture. But there is a huge difference if they were deaf and then later became blind. These individuals usually belong to the Deaf community and share the experiences of the Deaf culture. There are some individuals that suddenly become deafblind. In this situation, these individuals will most likely feel ‘disabled’ and not fit into either of the above categories. Besides these three categories, there is one new category that is beginning to emerge, and that is a Deaf-Blind Culture/Community. There is some debate as to whether or not Deaf-Blind can be truly classified as a unique culture. Since this is a relatively new concept, we will have to wait and see how the Deaf-Blind community develops this notion.

The Deaf-Blind community does have a rich, but elusive history. Most people in the American mainstream believe that the deafblind history began with Helen Keller. Actually, deafblind individuals have existed throughout history. For example, Julia Brace was the first deafblind American to receive education. She was born in 1807 in Hartford, Connecticut, and began her education at the Hartford Asylum for the Deaf and Dumb. The first recorded deafblind person to learn oral language was Laura Dewey Bridgman [fig.1]. Laura was born in 1829 in New Hampshire. At age seven, Doctor Samuel Gridley Howe, founder of the Perkins Institute for the Blind, began her formal education. By age twelve, she was reading, writing and doing arithmetic.

Helen Keller is definitely the most famous deafblind person. She was born in 1880 in Alabama. As the well-known story goes, Helen met Anne Sullivan when she was six years old [fig. 2]. Anne not only gave her formal education, but also gave Helen warm friendship. During Helen’s lifetime, she wrote numerous pieces of literature such as “The Story of My Life”. She was the first person who was deafblind to graduate from college, and met many famous people. In 1967, the “Industrial Home for the Blind” was inspired to change its name to the “Helen Keller National Center” (HKNC). Since her passing in 1968, she has become a role model for the Deaf-Blind community.

In the late 1800’s, schools for the deaf and the blind were established. Some of the schools include the Colorado School for the Deaf and the Blind, 1874; the Florida school for the Deaf and the Blind, 1885; Utah Schools for the Deaf and the Blind, 1900; and the Idaho School for the Deaf and the Blind, 1906. During this era states also created agencies to service the deaf and the blind. In some states, agencies were developed to work with the unique population of ‘deaf-blind’, such as New Jersey’s Commission for the Blind and Visually Impaired (NJ-CBVI). NJ-CBVI created a special unit during the early 1970’s to work exclusively with the Deaf-Blind community.

Recently, the Deaf-Blind community has become more active. Some of the community’s activities include the creation of a national organization, the American Association of the Deaf-Blind (AADB) in 1975, and the establishment of social clubs like the Deaf-Blind League of New Jersey (DBLNJ) in 1982. In 1992, DB-LINK was created with funds of the US Department of Education, Office of Special Education. DB-LINK’s main goal is to provide information concerning deafblind from birth to age 21. The following year, the deafblind publication “Deaf-Blind Perspectives”, was created.

This brief historical narrative of the community leads to the basic question of communication. Much of the communication mode depends on which sensory impairment came first. For example, if the person was blind and then became hard of hearing they may rely more on Assistive Listening Devices (ALD’s), Braille [fig. 3] and Re-Voicing. Four main types of ALD’s are Personal Amplified Systems, Infrared Systems, FM Systems and Loop Systems. Since, only about nine percent of all blind people can read Braille, ‘Books-on-Tape’ may be an option if the person’s hearing has not fully regressed. This would also apply to Re-Voicing, if the individual has enough residual hearing. Re-Voicing is the process of having an assistant repeat the source language in a more audible volume/tone.

If a person who is blind becomes fully deaf, the above would not be an option. The individual may still be able to read Braille or even speak, but would have to receive other communications in a different mode. In this case, more of an English based sign language would most likely be used in a modified tactile method. Tactile signing consists of the interpreter signing into the deafblind person’s hands. There are a few varieties of this method. When working with a person who is deafblind, one is encouraged to find out their preferred mode of communication. Another point to keep in mind is the stress and strain related to each mode of communication on the interpreter.

When a person who is deaf begins to lose their vision, they may require people to sign in a modified visual field. Usually, they will adjust the other person’s signing space at the beginning or may make adjustments during the conversation. Some may just hold the wrists of the signer to keep the signs within the field of vision. This mode is called Tracking Signing. Individuals that are born deaf tend to use American Sign Language (ASL) and live in the Deaf Culture/Community. If a person who is deaf has residual vision they may use ASL with these minor adjustments.

An individual who is deaf that becomes fully blind would require a modified tactile method. As just stated, most people born into the Deaf World use ASL. American Sign Language is a visually based language that requires the face/body to display sentence grammar. Therefore, it has to be modified in a way that reflects the source language. People who are deafblind can effectively use ASL, but individuals that use ASL to communicate with the deafblind must be flexible. Again, it is encouraged to find out what the deafblind person prefers.

For people that become deafblind, as through an accident, none of these modes of communication may be sufficient. In these cases, individuals who became deafblind suddenly, may use Print-on-Palm [fig. 4], Tactile Finger Spelling [fig. 5 & 6], or Tadoma [fig. 7]. Print-on-Palm requires little to no training. Basically, it consists of drawing the letter of the alphabet on the palm of the hand. Some individuals may prefer that the letters be drawn on their back, either way the concept is the same. Tactile Finger Spelling is a faster way of communicating than Print-on-Palm, but it does require some training and practice. Tadoma is the method of the deafblind person placing their hands on the speaking person’s face and ascertaining the communication by feeling vocal vibrations and facial movements.

The last category are those who are born deafblind. This class will have the most natural form of interaction. Their mode of communication can have a wide range that depends on the school they attended and parental influences as a child. Whatever the mode of communication or category of the individual, Support Service Providers (SSP) will most likely be required to provide the best channel of communication and mobility.

In an ideal world, an SSP would be a professional individual that is RID (Registry of Interpreters for the Deaf) certified as CI (Certificate of Interpretation) and CT (Certificate of Transliteration), has a degree in O&M (Orientation and Mobility), is proficient in Braille, and is skilled with adaptive technology. Skilled in all four of these areas, this SSP would be the ultimate assistant for any individual that is deafblind. The term ‘SSP’ was created at an AADB meeting during their national convention. Currently, most SSP’s do not hold these skills. It is standard practice for agencies to use volunteers that may have few of these skills. A quick review of each of these areas will demonstrate the need for ‘professional’ SSP’s.

RID is a national organization of interpreters. Its main focus is the improvement of interpreting for the deaf. The Certificate of Interpretation shows that the person has the ability to interpret between ASL and spoken English. This is a needed skill for those individuals that are deaf and become blind. The Certificate of Transliteration shows that the person has the ability to transliterate between signed English and spoken English. This would be needed for blind people that become deaf. RID also offers another certificate that has the possibility to enhance the SSP profession. Certified Deaf Interpreter (CDI) is a deaf or hard of hearing person that is skilled in the process of interpreting. In a lot of cases, a CDI would make the best SSP due to the fact that they share similar communities and communications with the deafblind.

Orientation and Mobility encompasses a variety of skills. Orientation refers to the skills a person learns to be more functional in their environment. Mobility encompasses the independent travel of an individual. If the SSP has O&M skills, they will be a better guide for the person who is deafblind and will have the ability to assist the individual with becoming more independent. Being able to guide a person who is deafblind is just as critical as knowing how to communicate with this unique community.

Knowing Braille is important for three reasons. The first is that it can establish a bond between the person who is deafblind and the SSP. Second, if the individual that is deafblind doesn’t know Braille, the SSP can assist them with learning it. Thus, aiding the person who is deafblind becoming more self-reliant. The last reason would be that the SSP would be able to Braille letters to the person who is deafblind, although in this modern age, an SSP could use a computer program to do this for them.

The last major area involves SSP’s knowing adaptive technology. Being skilled in this area will greatly benefit the person who is deafblind and the community at large. Technology is always changing and the use of it relies heavily on the individual. Knowing the available equipment and how each different consumer could use it is a valuable asset. Adaptive technology in the hands of an educated user is one of the most empowering tools that exist today.

With this brief overview, we can begin to appreciate people who are deafblind. We can see that they have an origin, history, and language. These characteristics help formulate their community and could possibly establish deafblind as a “culture”. In closing, everyone is encouraged to explore this fascinating community.

RESOURCES

Linda Kates, M.Ed., M.A., Jerome D. Schein, Ph.D.; A Complete Guide to Communication with Deaf-Blind Persons, 1980.

Jerome D. Schein, Ph.D.; A Plan Prepared for the Commission for the Blind and Visually Impaired, September 1983.

Theresa B. Smith; Guidelines: Practical Tips For Working And Socializing With Deaf-Blind People, 1994.

J.M. Gill; International Guide to Aids and Services for the Deaf-Blind, January 1986.

Registry of Interpreters for the Deaf (VIEWS), Vol. 14, Issue 11, December 1997; I Don’t Do Deaf-Blind; Rhonda Jacobs, CI & CT.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Deaf-Blind Interpreting 101; Rhonda Jacobs, CI & CT.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Deaf-Blind Interpreting; Jamie McNamara.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Tactile Interpreting - Are You Ready?; Jodene Downey.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Deaf-Blind Interpreting - International Style; Carol Gregg, CT.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Challenges in Deaf-Blind Interpreting: Then and Now; Carolyn Jolley, CI.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Definitions of Alternative Communication Styles With Deaf-Blind People; Julie Devich.

Registry of Interpreters for the Deaf (VIEWS), December 1997; The Dilemma of Deaf-Blind Interpreting; Ruth Sandefur, RSC, OIC:V/S.

Registry of Interpreters for the Deaf (VIEWS), December 1997; The Acquisition of Tactile Sign Language (TSL) By Deaf-Blind Adults; Candace Steffen, CI.

Registry of Interpreters for the Deaf (VIEWS), December 1997; Community Commitment To Nurturing Deaf-Blind Interpreters; Marthalee Galeota.

Registry of Interpreters for the Deaf (VIEWS), December 1997; A Glossary of Some Communication Methods Used With Deaf-Blind People; Sheryl B. Cooper, PhD, IC/TC. RSC.

Registry of Interpreters for the Deaf (VIEWS), January 1998; Teaching About the Deaf-Blind Community; Janet K. Marcous.

Registry of Interpreters for the Deaf (VIEWS), Vol. 17, Issue 8, August/September 2000; Deaf-Blind Interpreting in the Classroom; Rachel S. Levy.

New Jersey Division of the Deaf and Hard of Hearing; Interpreters and the Deaf Community, 1998.

New Jersey Registry of Interpreters for the Deaf (NJRID Mediator); Summer 2000, ‘Deaf-Blind Interpreting: Doing the Work at Hand’; Betty Broecker, BA, RSC.

New Jersey Registry of Interpreters for the Deaf (NJRID Mediator); April 1993, ‘Working With The Deaf-Blind Community’; Diane Goldberg Weiss, MA, CSC.

 

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http://dww.deafworldweb.org/pub/f/abcasll.gif

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