Deaf-Blind People: Diversity and Commonality

1. Deaf-Blind People: Diversity and Commonality Chapter 4.1.1

2. 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.

3. Overview, cont. Finally,whatdoesitmeantobe“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)

4. THE PRACTICAL / SERVICE AGENCY VIEW

5. 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.

6. Who is Deaf-Blind: Ophthalmological, Audiological views

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

8. 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

9. Deaf-Blind People:LifeHistory,theSociologicalView,cont. • Born deaf and blind • Born deaf and blind with other complicating medical conditions • Born hearing and sighted – then… Accident • Etcetera

10. Deaf-Blind:The Linguistic View First Language • ASL • English • Other (e.g. Colombian Sign Language, spoken Spanish)

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

12. THE DB COMMUNITY VIEW

17. 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.

18. 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.

19. LANGUAGE, CULTURE AND IDENTITY

20. 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.

21. 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 hearingorhard-of-hearingaschildrenand do not use Sign Language regularly. The third (tiny) group is people who have identified as deaf-blind since childhood.

22. 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.

23. 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.

24. 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.

25. Some Deaf-Blind Israelis

26. Deaf-Blind Japanese

27. Mexican-American DB man

28. GEOGRAPHIC VARIATION

29. 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.

30. 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.

31. 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.

32. Communication Access:Qualified Interpreters

33. Communication Access: SSPs

34. Communication Access: Braille

35. Equipment: Deaf-Blind Communicator (DBC)

36. Orientation & Mobility Photo credit: Seattle Lighthouse for the Blind, Horizons newsletter, Spring 2006

37. Transportation Access

38. Jobs

39. Friends Community, Communication, and Touch

40. 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

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

42. Dual Roles: Interpreter-SSP

43. 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.

44. 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.

45. 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.

46. 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.