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, 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)

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 Blind Partially Sighted Tunnel Vision Sighted DeafDB Deaf Hard-of- Hearing DB Hard-of- Hearing HearingBlind Low Vision Hearing

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: 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

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 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.

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.