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 View

• Services: – 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

• Born deaf and blind with other complicating medical conditions

• Born hearing and sighted – then… Accident

• Etcetera

Deaf-BlindThe Linguistic View

• First Language

–ASL

–English

–Other (e.g. Colombian Sign Language, spoken Spanish)

Modality / Channel

• Primary 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.

• 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 & Mobility

Photo credit: Seattle Lighthouse for the Blind, Horizons newsletter, Spring 2006

Transportation Access

Jobs

Friends

Community, Communication, and Touch

The DB Community is Complex: Non-DB People Can Be Members

COMMUNITY MEMBERS

• Deaf-Blind People

• Deaf-Sighted People

• Hard-of-Hearing-Sighted People

• Hearing-Sighted People

SOME 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.

• 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.