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).Back to Top of Page.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.)
Back to Top of Page.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.
Back to Top of Page.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 FormatsMaterials 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.
Back to Top of Page.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 DogsAfter 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.
TransportationDepending 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
Back to Top of Page.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.
Back to Top of Page.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.
Back to Top of Page.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.
Back to Top of Page.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.
Back to Top of Page.
