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Frequently Asked Questions about DeafBlindness

1. Does DeafBlind mean completely blind and completely deaf?

No. It is common for people who are DeafBlind to have some residual hearing and/or vision.

Definitions

Deafblindness is a combination of vision loss and hearing loss that prevents access to communication, the environment, and people. A person who is DeafBlind may or may not have other physical or cognitive disabilities; each individual is different.

For individuals of all ages, DeafBlindness is a unique experience separate from Deafness and from Blindness. You can read more information in What is DeafBlindness? or Overview on DeafBlindness.

Legally, children in the United States are called "deafblind" if they have "such severe communication and other developmental and learning needs that the persons cannot be appropriately educated in special education programs solely for children and youth with hearing impairments, visual impairments or severe disabilities, without supplementary assistance to address their educational needs due to these dual, concurrent disabilities" (1990, IDEA, Sec. 622).

Terminology

Other terms for deafblindness include dual sensory impairment, combined vision and hearing loss, dual sensory loss, and dual sensory disability. Some people spell the word deafblind with a hyphen, or (less commonly) a slash between "deaf" and "blind." When the word DeafBlind is capitalized, it connotes cultural identification (see Question 8 below).

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2. What is it like to be DeafBlind?

Diversity

People who are deafblind can exist in every generation, ethnic background, social class, gender, and geographic location in the world.

Challenges

Deafblindness is a disability of access to sights, sounds, and information. All people with dual sensory loss face similar challenges, including:

• depending on others, to a certain extent, in order to feel safe and informed,
• learning and using communication strategies,
• becoming aware of and navigating their surroundings,
• finding social, living, and employment situations that fit their individual talents, needs, and aspirations.
• Attitudinal Barriers that complicate their interactions with non-deafblind people.

Hearing loss causes difficulties communicating with people using spoken language, and vision loss causes problems using visual languages, such as sign language. With limited or no access to the sights, sounds, conversations, and interactions of the environment, you can imagine the difficulty DeafBlind people have in traveling around town, going shopping, and visiting the doctor.

However, when their needs are accommodated, people with dual sensory loss can live full, satisfying lives. (See Question 3 below.)

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3. What can DeafBlind people do?

DeafBlind children and adults thrive in a variety of work and family settings when their needs are supported. Many DeafBlind adults have families, are gainfully employed, and live independently.

Self-Determination

Self-Determination means being able to control your own life, reach your goals, and take part fully in the world around you.

See also

• Self-Determination for Children and Young Adults Who Are Deaf-Blind
• Introduction to Independent Living
• The University of Minnesota's Institute on Community Integration has a program for students with deafblindness called Enhancing the Self-Determination of Youth and Young Adults Who are DeafBlind.

Supports: Tools for Independence

Disability rights laws, support personnel, and assistive technology increase a DeafBlind person's access to visual and auditory information. Through consumer advocacy groups, people with disabilities and their allies unite to work toward better accessibility and quality of life. For details, see our Supports page.

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4. How do DeafBlind people communicate?

Variety of methods

Some of these methods include tactile sign language, close-vision sign language, fingerspelling, writing notes in large print or Braille, print-on-palm, Cued Speech, gestures, pictures, lipreading, tactile symbols, and touch cues. Some people with dual sensory loss are able to use auditory methods in which the speaker talks in slow, clear, speech a short distance from the listener's ear or assistive listening device. For more details, read an illustrated article called Different Types of Communication used by Deaf-Blind Patients.

Choosing Methods

Usually an individual will have a favorite method, but probably adapts his or her communication method or style to meet the needs of others. The choice of communication method often depends on whether the individual lost their hearing first, or their vision first, or both simultaneously.

Child Language Development

For children who are developing language and a means of communication, every option possible must be tried in order to find a communication method that will meet each individual child's hearing and vision losses. For those children and youth who have other physical or cognitive disabilities, a system of gestures, cues or tactile cues may be all that is used at first. See our Parent and Family Resource Guide for information about choosing communication methods.

How do you communicate with a DeafBlind person?

Tips on How to Communicate Effectively with Deaf-Blind People is an article that deals with practical considerations and awareness of DeafBlind cultural norms. See also CUEmmunication: Beginning Communication with People who are Deafblind.

For clear advice about how to interact with a person who has a visual, hearing, mobility, or cognitive disability, see Tips for Effective Communication with a Disabled Person.

See also our page about Learning Braille, Sign Language, and other specialized communication modes.

Alternate Formats

Materials that are in regular print can be put into accessible, alternate formats for people with dual sensory loss. Some of these formats include large print, Braille, text file on computer disk, and audio recording (depending on degree of sensory loss). See also The Blind Readers' Page for information on accessible formats and other topics related to vision loss.

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5. How do DeafBlind people get around?

Orientation and Mobility Training

Most people with vision loss receive training in Orientation and Mobility (O&M). O&M allows them to use a white cane or other tools and techniques to safely and independently navigate unfamiliar places.

Guide Dogs

After they become proficient in independent travel using a white cane, some people decide to get a specially-trained guide dog. A guide dog does not make decisions about where to go, how to get there, and how safe the route is. Instead, the blind or deafblind person must use orientation and mobility skills to make those decisions and then give the guide dog brief commands like "forward" and "up." See also Service Dog information.

Sighted Guide

Another O&M tool is the sighted guide. As the person with vision loss holds onto the guide's arm, the guide walks slightly ahead of him or her, providing information about upcoming landmarks or changes in the walking surface.

Transportation

Depending on their type and degree of vision loss, some DeafBlind people are able to independently drive a car or motorcycle, or ride a bicycle. Others use public transportation, special van services for people with disabilities, taxi cabs, or ride in a vehicle driven by a friend, family member, or support service provider.

Further Information

Although some of the following articles focus on children, the information and techniques in them are used by people of all ages.

• The Importance of Orientation And Mobility Skills For Students Who Are Deaf-Blind is a very informative, illustrated article on O&M skills, techniques, and training for people who are DeafBlind.
• For an overview of O&M concepts and skills, see Orientation and Mobility Training: The Way to Go.
• Traveling With Your Eye Shut: Travel Tips for the Visually Impaired

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6. What causes deafblindness?

Variety of Causes

There are many causes of deafblindness. Some people lose part or all of their vision and hearing due to illness (as Helen Keller did), accident, or a genetic syndrome. Other people experience vision and hearing loss later in life as part of the aging process. For adults who are Deaf and then lose their vision, the most common cause is Usher Syndrome.

On the annual Minnesota education census of students who are deafblind, the following causes have been identified:

• Hereditary/chromosomal Syndromes. Some of these include Usher Syndrome I and II, CHARGE Syndrome, and Down Syndrome.
• Premature birth can come with many different complications leading to vision/hearing loss. For example, Retinopathy of Prematurity (ROP) is one common complication.
• Prenatal/congenital complications
• Post-natal complications
• Meningitis

Further Information

For a longer list of causes, see Primary Identified Etiology - Deafblind. Two informative articles are Syndromes Which Often Result in Combined Vision and Hearing Loss and Etiologies and Characteristics of Deaf-Blindness.

See also Diagnosis / Identification of Dual Sensory Impairment in our Parent and Family Resource Guide.

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7. How many people are DeafBlind?

The exact number is not known. However, the generally accepted estimates are that approximately 10% of the general population has a hearing loss. Of the 10% of people with hearing loss, approximately 1% are also blind or have serious vision loss.

In a February 2002 Report to the Legislature by the Minnesota DeafBlind Task Force, the number of Minnesotans who have a severe hearing and vision loss was conservatively estimated at over 700 people.

According to Joseph McNulty, director of the Helen Keller National Center, more than 70,000 deafblind people live in the United States. (Keep in mind that many more deafblind people exist than have been officially recorded.) You can view the most recent national (USA) statistics at the following sites:

• A Deafblind Census of children aged birth to 21 who have dual sensory impairment is taken annually by each state's federally-funded DeafBlind Project. Results are tallied by the National Technical Assistance Consortium (NTAC).
• A National Registry Of Persons Who Are Deaf-Blind, including adults, is maintained by the Helen Keller National Center.

See also:

• Deaf-Blind Canadians - Did you Know? - Some facts and figures about the Canadian deaf-blind population.

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8. Why do you keep capitalizing "DeafBlind" like that?

Cultural Identity

Many people who are Deaf or DeafBlind consider themselves to be part of a distinct cultural group. A group is considered a cultural group when it has its own language, norms, traditions, and values. For example, most people in the USA who identify as members of Deaf or DeafBlind Culture use American Sign Language (ASL) as their first language, and typically do not view their inability to hear as a deficit or disability, because according to the norms and values of their cultural group, they have normal, fulfilling, interactive lives without depending on sounds or spoken language to communicate.

When the words "Deaf" and "DeafBlind" begin with a capital letter, these terms refer to a person's cultural identification as a member of a language community. In the U.S. and parts of Canada, that linguistic minority communicates in American Sign Language (ASL). In other countries, the local Deaf and DeafBlind people use a native sign language that is different from ASL, just as people in Spain use a native spoken language that is different from English.

Medical View

By contrast, when we refer to the medical condition of not being able to hear well, we write "deaf" with a lowercase "d." Similarly, "deafblindness" refers to the medical view of a DeafBlind person as someone who has impaired hearing and sight, but it makes no reference to the person's language and cultural affiliation.

Further Information about Deaf/DeafBlind Culture

• There are many books, newspapers, and newsletters by and about the Deaf/DeafBlind community.
• Read what DeafBlind people from all over the world said about DeafBlind life at the Seventh Helen Keller World Conference.
• For a description of some DeafBlind cultural norms, see the The Unique Nature of Deafblindness and Resulting Fundamental Considerations, especially the section called "Deafblind people and culture."
• Tips on How to Communicate Effectively with Deaf-Blind People is an article that deals with practical considerations and awareness of DeafBlind cultural norms.
• The Ten Commandments of Deaf-Blind Culture is a humorous piece that was published on the Deafblind Mailing List.
• You may wish to explore a short but informative book (and web site) about American Deaf Culture called For Hearing People Only by Matthew S. Moore and Linda Levitan, Deaf Life Press.

9. I want to ask a question that is not listed here…

Great! Please use our brief Feedback Form to ask us any other question about DeafBlindness, or to tell us what you think about this web site and its contents. Thanks.

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