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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.