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Frequently Asked Questions About DeafBlindness



Does DeafBlind mean completely blind

and completely deaf?


What is it like to be DeafBlind?

What can DeafBlind people do?

How do DeafBlind people communicate?

How do DeafBlind people get around?

What causes deafblindness?

How many people are DeafBlind?

Why do you keep capitalizing "DeafBlind" like that?

I want to ask a question that is not

listed here...


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

The University of '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.

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 Tools for Independence

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?

For clear advice about how to interact with a person who has a visual,

hearing, mobility, or cognitive disability, see Effective Interaction: Communicating With and About People with Disabilities in the Workplace.

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.

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 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 DeafBlind Task Force, the number

of ns 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.

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.

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



Great! Please 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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