deaf-blind people: diversity and commonality

Deaf-Blind People: Diversity and Commonality Chapter 4.1.1

Overview• What does it mean for a population to

be diverse? Often we think of diversity in terms of racial and ethnic diversity; certainly this is true of people in the DB Community.

• Other elements of diversity are age, sexual orientation, education levels and family backgrounds. DB people vary along these lines as well.

Overview, cont.Finally, what does it mean to be “deaf-blind”?Parallel to the term “deaf” one can use this label from different perspectives:• Medical perspective• Practical perspective (how much can a

person hear/see)• Socio-cultural-linguistic term (core

members of a Community)

THE PRACTICAL / SERVICE AGENCY VIEW

Variation in Hearing/Vision• Some DB people have good central

vision but very limited peripheral vision while others have cloudy central vision.

• Some DB people are hard-of-hearing while others are profoundly deaf.

Who is Deaf-Blind: Ophthalmological, Audiological views

  Blind Partially Sighted Tunnel Vision

Sighted

Deaf DB DB Deaf Hard-of-Hearing DB DB Hard-of-

Hearing

Hearing Blind Low Vision Hearing

Deaf-Blind: The Service Agency ViewServices: • Orientation & Mobility• Braille Instruction• Interpreters• SSPs• Independent Living Instruction • Advocacy• Vocational Placement

Deaf-Blind People:Life History, the Sociological View• Born deaf – then lose vision • Born hearing or Hard-of-Hearing – then

lose vision • Born partially sighted or blind – then

lose hearing• Born deaf and blind

Deaf-Blind People:Life History, the Sociological View, cont.• Born deaf and blind• Born deaf and blind with other

complicating medical conditions• Born hearing and sighted – then…

Accident• Etcetera

Deaf-Blind:The Linguistic ViewFirst Language• ASL• English• Other (e.g. Colombian Sign

Language, spoken Spanish)

Modality / ChannelPrimary Modality:• Visual Sign Language • Tactual Sign Language • Auditory (spoken language)• Other (e.g. Print-on-Palm – POP)

THE DB COMMUNITY VIEW

Disability and Community• To think of deaf-blind people as just

having a disability is to miss the importance of communication: language and culture.

• To think of deaf-blind as just being members of a socio-linguistic minority is to miss the importance of the barriers DB people face to get information and move about the town safely.

Complexity• The temptation is to then assume one

must think of DB people on a ‘case-by-case’ basis and yet this itself is a service agency view (and an over-simplification).

• Communities are always complex and always composed of individuals and yet, they form a community, i.e. there are over-riding commonalities.

LANGUAGE, CULTURE AND IDENTITY

Identity• Identity is complex, situated and

evolves with time. We may, for example, identify as New Yorkers, parents, or artists and so on as, indeed do DB people.

• But, gender, race, and language-group are essential elements of our identity that grow in complexity over time, but do not change or disappear.

Life-History and Identity • What we commonly see in the DB

Community is three sub-groups.• The largest group are people who

identified as deaf as children. The next largest group is those who identified as hearing or hard-of-hearing as children and do not use Sign Language regularly. The third (tiny) group is people who have identified as deaf-blind since childhood.

The DB Community and Language• The largest grouping in the DB

Community is therefore composed of people who primarily communicate using a sign language. The next largest group are those who primarily use a spoken language, and the third, people who also use a sign language.

• Remember, we are speaking here of the DB Community, not all DB people.

Local Communities and the National Community• Many DB people live in areas with very

few DB people. They may socialize and participate primarily with non-deaf-blind people or be very isolated.

• Some DB people choose to move to cities where there are more DB people and better opportunities for participation.

Local Communities and the National Community, cont.• Nationally, the American Association of

the Deaf-Blind (AADB) provides both educational and social opportunities for DB people.

• Internationally there are connections as well.

Some Deaf-Blind Israelis

Deaf-Blind Japanese

Mexican-American DB man

GEOGRAPHIC VARIATION

SSPs Support Independence• SSPs work with DB people who are able

to make independent decisions.• DB people who need help managing their

money or making other life decisions need other services to support them.

• For example, one DB person may use primarily interpreters and SSPs, while another may use interpreters, SSPs, an advocate and a case manager.

Barriers• The barriers to participation in society

for DB people are communication and transportation.

• Without access a DB person becomes more and more isolated and is forced to depend on family members.

• Technology is a tremendous help if it is available at a reasonable price with appropriate instruction.

Barriers, cont.• DB people who live in areas where

there are good interpreters, qualified SSP service, employment and good transportation can form communities, equal friendships and avoid isolation.

Communication Access:Qualified Interpreters

Communication Access: SSPs

Communication Access: Braille

Equipment: Deaf-Blind Communicator (DBC)

Orientation & MobilityPhoto credit: Seattle Lighthouse for the Blind, Horizons newsletter, Spring 2006

Transportation Access

Jobs

FriendsCommunity, Communication, and Touch

The DB Community is Complex: Non-DB People Can Be MembersCOMMUNITY MEMBERS• Deaf-Blind People• Deaf-Sighted People• Hard-of-Hearing-Sighted People• Hearing-Sighted People

The DB Community is Complex: Non-DB People Can Be MembersSOME AFFILIATIONS• Spouses• Children • Parents• Interpreters• SSPs• Deaf Community members…

Dual Roles: Interpreter-SSP

Dual-Roles: SSP & Friend• Some SSPs also have friends who are

deaf-blind.• It is important to be clear when you are

in which role.

Conclusion• What it means to be “deaf-blind” is

complex. • To some extent it depends on

perspective. • Within the DB Community there is both

diversity and commonality.

Conclusion, cont.• Among professionals & DB people

there are multiple roles and relationships.

• The only way to really understand is to get involved, keep an open mind, observe and learn.

The Future• DB people have only recently been

recognized by the law and by professionals.

• Access is still spotty and developing.• Communities are coalescing and

beginning to progress.