Items

• TOUCH SIGNALS: Using Touch to Convey Visual and Environmental Information to People who are Deaf-Blind [Online course]
  https://hkonlinecourses.org/Courses
• WHAT ARE TOUCH SIGNALS? [Listserv message]
  A brief overview of touch signals, including Haptic Communication and Back-Back Channeling, that was sent out to the Professionals Serving Deaf-Blind Consumers Listserv.
• LANGUAGE AND COMMUNICATION IN PEOPLE WHO ARE DEAFBLIND
  This chapter provides an overview of communication in people with deafblindness, covering levels of communication, modes and functions, using touch, communication challenges, early versus late deafblindness, consequences of limited perception of distant stimuli, social- emotional and behavioral challenges, assessment approaches and tools, augmented and alternative communication (AAC), and building an environment conducive to communication. In Marc Marschark and Patricia Elizabeth Spencer (Eds.), The Oxford Handbook of Deaf Studies in Language (pp. 325-343). Oxford University Press.
• CO-FORMING REAL SPACE BLENDS IN TACTILE SIGNED LANGUAGE DIALOGUES
  This article reports on a linguistic study examining the use of real space blending in the tactile signed languages of Norwegian and Swedish signers who are both deaf and blind. Tactile signed languages are typically produced by interactants in contact with each other’s hands while signing. Of particular interest to this study are utterances which not only consist of the signer producing signs with his or her own hands (or other body parts), but which also recruit the other interactant’s hands (or another body part). These utterances, although perhaps less frequent, are co-constructed, in a very real sense, and they illustrate meaning construction during emerging, embodied discourse. Here, we analyze several examples of these types of utterances from a cognitive linguistic and cognitive semiotic perspective to explore how interactants prompt meaning construction through touch and the involvement of each other’s bodies during a particular type of co-regulation. COGNITIVE LINGUISTICS, Vol. 26, No. 2, pp. 261-287.
• A CASE STUDY OF TACTILE LANGUAGE AND ITS POSSIBLE STRUCTURE: A Tentative Outline to Study Tactile Language Systems among Children with Congenital Deafblindness
  This article theorizes that tactile languages may exist as unique languages (rather than just modifications of visual sign language). Through the analysis of a 1 ½ minute video of a congenitally deaf-blind boy communicating with his mother about a playground experience, the authors explored tactile linguistic features of phonology, morphology, semantics, and syntax. The linguistic features of tactile language were found to involve a potential unique and complex structure based on direction, speed, and acceleration of movements; pressure; and body position. JOURNAL OF COMMUNICATION DISORDERS, DEAF STUDIES & HEARING AIDS, Vol. 3, No. 2.
• EMPOWERING PEOPLE EXPERIENCING USHER SYNDROME AS PARTICIPANTS IN RESEARCH
  Engaging people from marginalized groups such as the deafblind and Usher communities to participate in research has historically proved challenging, mainly due to communication differences between participants and researcher. This British article discusses the use of an approach called “Multiple Sensory Communication and Interview Methods” (MSCIM) during a qualitative research study involving 20 adults with Usher syndrome. Communication and interview methods were participant-led. Communication methods included clear speech, visual frame British Sign Language (BSL), hands-on BSL, deafblind manual, and written communication. Participants were given the choice to be interviewed face to face, over the telephone, via Skype (video or no video), or via email. The approach led to a measure of unexpected equalizing between the researched and the researcher and explored how empowering individuals from marginalized groups as active participants contributes to inclusivity and promotes trustworthiness in research. BRITISH JOURNAL OF SOCIAL WORK.
• BRIDGING THE GAP BETWEEN DEAFBLIND MINDS: Interactional and Social Foundations of Intention Attribution in the Seattle DeafBlind Community
  This article is concerned with the linguistics of Tactile American Sign Language (TASL). It analyzes some of the social and interactional mechanisms that constrain pragmatic acts of intention attribution among DeafBlind people in Seattle, Washington. Drawing on analyses of video recorded interactions, notes from fieldwork, and more than 15 years of involvement in the Seattle DeafBlind community, the author argues that under the influence of the recent “pro-tactile” movement, DeafBlind people are generating new and reciprocal modes of access to their environment, and this process is aligning language with context in novel ways. She discusses two mechanisms that can account for this process: embedding in the social field and deictic integration. FRONTIERS IN PSYCHOLOGY, Vol. 6, Article 1497.
• PSYCHOSOCIAL WELL-BEING AND HEALTH-RELATED QUALITY OF LIFE IN A UK POPULATION WITH USHER SYNDROME
  This study surveyed 90 adults with Usher syndrome in the United Kingdom, measuring depressive symptoms, loneliness, and social support and how these related to physical and mental health-related quality of life (HRQOL). Psychosocial well-being was shown to predict physical and mental HRQOL. Increasing depressive symptoms were predictive of poorer physical and mental HRQOL. Higher levels of loneliness predicted poorer mental HRQOL. Finally, increasing levels of social support predicted better mental HRQOL. BMJ OPEN, Vol. 7, No. 1.
• PHYSICAL AND PSYCHOLOGICAL HEALTH, SOCIAL TRUST, AND FINANCIAL SITUATION FOR PERSONS WITH USHER SYNDROME TYPE 1
  Through a questionnaire, this study compared 60 persons with deaf-blindness due to Usher syndrome type 1 with a cross-section of the Swedish population. The psychological health, social trust, and financial situation of persons with USH1 were found to be significantly poorer than those of the reference group, although this was not the case for physical health (persons with USH1 only expressed significantly more problems with headache). The USH1 group reported fatigue, loss of confidence, suicide thoughts and attempts, not wanting to go out alone, not receiving help, and having no one to confide in. BRITISH JOURNAL OF VISUAL IMPAIRMENT, Vol. 34, No.1, pp. 15-25.
• PSYCHOSOCIAL ASPECTS IN USHER SYNDROME
  This article summarizes the recent international research studies on the psychosocial situation of people with Usher syndrome. It covers diagnosis, stress in different areas of life, mental health issues, social stress, self-image and self-esteem, sense of humor, and coping strategies and programs. DBI REVIEW, #56, pp. 22-25.
• NEEDS AND CHALLENGES OF SENIORS WITH COMBINED HEARING AND VISION LOSS
  This study surveyed 131 individuals with dual sensory loss between the ages of 55 and 99 years about their most important needs, the challenges associated with their sensory losses, and the training needs of the people who interact with them. The most commonly identified needs were transportation, technology training, assistance with errands, and improved communication. Medical providers were identified as the service providers who most need training about dual sensory loss. A majority of respondents thought their local community members, friends, and family also need education. Some differences were noted based on age of onset of sensory losses. JOURNAL OF VISUAL IMPAIRMENT & BLINDNESS, Vol. 110, No. 6, pp. 399-411.
• ONE OF SOCIETY'S MOST VULNERABLE GROUPS?: A Systematically Conducted Literature Review Exploring the Vulnerability of Deafblind People
  This literature review of 28 articles focuses on the experience of vulnerability in people with deafblindness. While no empirical studies specifically examining this topic were found, deafblind people described feelings of vulnerability in studies exploring their experiences more generally and in personal accounts. This population is identified as “at risk” of various adverse outcomes, particularly when compared to the non-deafblind majority. The literature largely relates to negative outcomes and includes significantly less exploration of positive risk taking, coping capacity and resilience. Deafblind people do not appear to describe themselves as being vulnerable as a permanent state, suggesting a need for greater exploration of the experience among all sections of this heterogeneous population, with consideration of resilience and coping. HEALTH & SOCIAL CARE IN THE COMMUNITY, Vol. 25, No. 3, pp. 813–839.
• LEADERS WHO ARE DEAFBLIND: A Phenomenological Study of Educational Experiences [Dissertation]
  This dissertation examines the educational experiences of five leaders from the DeafBlind community. Data collection consisted of two in-depth face-to- face interviews, two participant journals, and document reviews. Critical DeafBlind Theory (CDBT) served as the theoretical framework to determine how the educational experiences of leaders who are DeafBlind were interwoven with the norms and values of the DeafBlind community. Themes that were identified included "not experiencing complete access," "direct and full access," direct "hands on experience" education, extracurricular experiences, "missed a great deal of information," "advocating for myself," "many kids teased us," "discussions with my classmates," self-educating, the importance of role models who are DeafBlind and d/Deaf, and "most of my learning came through reading." Includes some discussion of interpreters and SSPs.
• PERCEPTIONS OF SOCIAL NETWORKS BY ADULTS WHO ARE DEAFBLIND
  In this study, 10 adults who are deafblind were interviewed about their social lives. Additional data was collected from a discussion board and emails from the study participants. Three findings emerged from the data: (a) Navigating adaptations was a significant part of socialization. (b) Gaps existed in work, family, and formal support networks. (c) The participants drew upon resiliency and advocacy to manage these gaps. The article includes a discussion of the Pro-Tactile movement. AMERICAN ANNALS OF THE DEAF, Vol. 161, No. 3, pp. 369- 383.
• COMMUNICATION GUIDE SUPPORT FOR WESTERN AUSTRAILIANS WITH DEAFBLINDNESS: A PILOT PROJECT [Thesis]
  This study measured the effects on ten people who are deaf-blind and received support over a six month period from a ‘communication guide’ who received training in deaf-blind issues, sighted guide and deaf-blind communication. Participants completed pre-post quantitative measures and a semi-structured interview at the end of the intervention. The qualitative and quantitative data indicated improvement in quality of life of participants.
• ADVERBIAL MORPHEMES IN TACTILE SIGN LANGUAGE: Deaf-Blind Interpreting
  This chapter investigates adverbial use in tactile American Sign Language (TASL) using a linguistic case study of a conversation between two adults with Usher syndrome Type I. The participants were videotaped during a 50-minute dialogue. The study found that the signers used tactile components (such as holds, tenseness in hands, and added signs) to make up for visual nonmanual signals that convey meaning in ASL. Specific ways in which they expressed adverbials of various types are presented in tables. The author concludes that there is grammatical variation between visual and tactile ASL.
• VICTORY, MEASURED BY THE HEART
  An article highlighting the successful efforts of a woman with Usher Syndrome completing a triathlon with the assistance of a support team of interpreters and guides. Describes Maricar Marquez's experiences as a woman who is deaf-blind and her will to do many things including rock climbing, exploring caves, skydiving, and triathlon. DEAF-BLIND AMERICAN, vol. 37, #3, April-June 1999, pp. 11- 14.
• THE ONLY WAY SIGNING CAN KILL US
  This article is a poem written by a person who is deafblind reflecting on sign language. This document is available on the web at: http://www.nfb.org/Images/nfb/Publications/fr/fr22/fr06sum03.htm FUTURE REFLECTIONS, Summer 2006, Vol. 25, #2, p. 11.
• MIND OVER MATTER: Coping with Disability
  Roberta Fanicelli interviews Winnie Tunnison about what it is like to be deaf adult who then loses her sight. Patricia Capone acts as interpreter for Winnie who signs her responses to Fanicelli's questions. Winnie discusses her emotional and intellectual responses to the realization that she was indeed going blind, including her hospitalization and treatment for depression. Ilene Miner represents the Helen Keller National Center and talks about what the program offers adults who are deaf-blind and the emotional impact often felt by those adults who find they are losing both sight and hearing. Open captioned. HKNC, 111 Middle Neck Road, Sands Point, NY 11050-1299, (516) 944-8900.
• COMMUNICATING WITH YOUR DEAFBLIND PATIENTS
  This article describes who deafblind people are, how to tell if someone is deafblind, and how to communicate with someone who is deafblind. Describes various methods of communication including fingerspelling and using the phone. Provides information on how to assist someone who is deafblind to get around in the community and how to ensure they are safe and healthy. Publisher's web site: http://www.sense.org.uk This document is available on the web at: http://www.sense.org.uk/pdfs/10point.pdf
• TEAM STRUCTURE FOR A DEAF-BLIND STUDENT
  This article provides examples and role definitions for support team members for a deafblind student. Roles of the student, parent, administrator/case manager, primary support teacher, interpreters, vision teacher, and mobility instructor are defined in detail. Various methods to define, establish and communicate the role of each team member to general educators are provided. Sample topics to address in a guidebook for inclusion of a deafblind student are included. VIEWS, vol. 17, #3, March 2000, pp. 16-17.
• FURTHER AND HIGHER EDUCATION FOR PEOPLE WITH USHER SYNDROME: Interview with Emma Hancock
  The author interviews a young woman, Emma Hancock, who has Usher Type 1 and who is a college student in London. The student discusses her difficulties in choosing the right school for her needs and finding financial support for the special services she requires, such as tutoring, interpreting, and note taking. Her difficulties in dealing with the attitudes of her fellow students and instructors and in coping with communication issues are included. The article ends with 11 tips that Ms. Hancock offers others in her situation. This document is available on the web at: http://www.sense.org.uk/publications/allpubs/magazine/tsarticles/1996/usherfured.htm TALKING SENSE, vol. 42, #3, Autumn 1996, pp.24-26
• HOLISTIC AND INTERACTIVE COMMUNICATION WITH ACQUIRED DEAFBLIND PEOPLE
  An article outlining an upcoming research grant focusing on holistic communication strategies in the area of acquired deafblindness. The aims of the research are: to examine the strategies and theoretical models of the function of language for improving communication for acquired deafblind people, their family members and interpreters, to analyze and identify how these different methods and techniques can be applied to improve the quality of communication, to identify internationally the most common methods of how a person is able to describe their own emotional feelings, to interpret environmental information and non-verbal signals to deafblind persons through touch, and to produce articles, videos and teaching materials during the research project. NUD NEWS BULLETIN, #1, 1999, pp. 20-21.
• Communication: reaction
  Discusses the need for deaf-blind people to be exposed to their natural language, American Sign Language. Also talks about his belief that parents and family members of people who are deaf-blind must build a rapport with, and interact with, members of the deaf-blind community. Proceedings of the National Symposium on Children and Youth who are Deaf-Blind, Tysons Corner, VA, December 1992. J. Reiman and P. Johnson (Eds.)
• IMPROVING ACCESS FOR DEAF-BLIND PEOPLE
  This video is intended for hearing and sighted people who work in recreational facilities, such as zoos and museums. It explains how to provide service and improve access to facilities for deaf-blind consumers. Communication methods, use of a tty, how to tell when a deaf-blind person needs help and how to provide it, and deaf-blind culture are discussed. Ways of improving access, such as how to get printed materials made into Braille or large print, provision of good lighting, easy-to-read signage, interpreters and guides, are offered.