CITATION AND COPYRIGHT INFORMATION:
Cite as: Linderman, A. (1999, May). The potential of Sense-Making as an approach to deaf studies. Paper presented at a non-divisional workshop held at the meeting of the International Communication Association, San Francisco.
© Albert Linderman (1999).

ESSENCE OF PROJECT:
Those who provide products and services to Deaf and hard of hearing people (hereafter referred to as“DHH”) (1) can benefit from an understanding of how DHH learn, process, and use the services provided, presentations made and materials used by these organizations. Service and product provision to DHH regularly includes untested assumptions about the needs and wants of the consumer. I seek to get the voice of the DHH consumers. In narrowing the parameters of this need, I am focusing on providing research for the start-up of a Deaf Hospice Volunteer Training Program, spearheaded by efforts of the College of St. Catherine, St. Paul, MN. The long term goal of this Program is the establishment of a culturally and linguistically appropriate DHH hospice volunteer training program, that will effectively train DHH people as hospice volunteers. The eventual goal is to establish a hospice for DHH in which DHH and hearing people work in partnership, share power, make decisions and learn from each other. Research is needed into the experience of DHH with the hospice. Consumers include DHH relatives of hearing hospice patients and DHH patients themselves. Additional research is needed into DHH view of, and approach toward, death and how this may be unique to DHH people.

THE REASONS I TOOK THIS ROAD:
The question any service provider needs to ask is not, “How do I get more information out to Deaf and hard of hearing people,” but rather, “How do I access the channels and processes Deaf and hard of hearing people use so they have the optimum opportunity to benefit from the services we provide?” Volunteers are considered the heart of a hospice program - indispensable members of the hospice team. The potential role of volunteers includes: companionship, spending time with the dying person, reading, talking, visiting; emotional and spiritual support for the dying person and the family. Volunteers often become an important friend to the family by helping with practical needs. They can provide important bereavement follow-up for example by maintaining phone contact with the family for a year after a death occurs. They also provide critical leadership on hospice Boards. To effectively train volunteers, some understanding of the experiences of DHH people with both death and hospice care must be explored. I am currently seeking grant money to pursue this effort. One primary motivation for this research relates to my background in anthropological studies and my desire to more adequately understand and explicate the essence of this “dark matter” called “Deaf Culture.” As is the case in astronomical circles where dark matter has been postulated due to observed natural effects, while remaining elusive to analysis, Deaf culture has been accepted in many circles as reality, though an effective description of its verbings and processings has remained unarticulated. Sense-Making requires that DHH talk in their own terms and in the contexts of their own situated lives about their needs and wants around the issues of death and dying. This allows an identification of the differing gaps existing between DHH consumers and the hospice organization, as well as providing helpful insights for the design of the volunteer training program.

THE BEST OF WHAT I HAVE ACHIEVED:
In pursuing this, I began with two postulates. One: Because of some shared history and worldview framework, DHH have certain patterns of learning and processing. While not trying to prove this, I looked at the literature with an eye to glean helpful information about this topic. This does not suggest that all DHH always operate similarly. There is great diversity and creativity demonstrated by individuals. However, the history and worldview shared by DHH does create certain shared patterns. Following Sense-Making theory, there is an inherent, intertwined connection between how one looks at a situation and the sense of it one is able to construct. My previous research (Linderman 1997, 1998) indicates that DHH do look at many situations similarly. Postulate two: DHH awareness of these patterns is limited and haphazard. One of the advantages of SM interview methodology is its conscientizing effects. In reviewing the literature, I have summarized what service providers can learn and where to obtain this information. However, there remains significant gaps in understanding how DHH can most effectively be served. I am currently in the process of theorizing Deaf culture. From the more than 20 SM interviews with DHH I conducted between 1996-1998, I have identified six processings of Deaf people. These processings develop because of the unique way Deaf people are positioned in the world. Three of them develop out of interaction with a hearing world and three of them develop out of community building processes within the Deaf world.

WHAT HAS BEEN HELPFUL:
The frequent opportunities I have to interact with Deaf professionals, service providers, and community leaders provides grounding and suggests potential hindrances. At this point, the leadership for the Hospice Program seems to welcome and value the potential contributions Sense-Making research can contribute to its design. Theoretically, I continue to benefit from reading Dervin’s work and comments provided to me and to others. I find Sense-Making to be a comprehensive theory that has much to offer culture/ethnographic theory. Specifically, SM as a theory of mediation helping elucidate how people make and unmake sense, along with its methodology of the interview (derived from its comprehensive theory of the subject, ontology, and epistemology), provide the framework within which I approach the research. Also, having some experience with SM in my dissertation research provides me with a sense of where I’m going.

WHAT I HAVE STRUGGLED WITH:
One struggle is the limitations I have had in terms of time available for interactions with other theoreticians. Since I do not regularly work with any academics, and given the nature of my other obligations, I have chosen not to take the time and effort to prioritize the interactions, though I know they would benefit my work. Of course, on the flip side, as mentioned above, I have the advantage of my frequent interactions within DHH society. One challenge is the lessening of the role power issues will play in the research. As a hearing person viewed by DHH people as privileged and in a position of power, I need to find ways to attend to this situation and react appropriately to their understanding of the situation.

WHAT WOULD HELP NOW:
By the time of the workshop, I will have developed an interview instrument. Some input for the instrument will be helpful as well as suggestions for coding the data. I would also like some more general help regarding the larger issues I have mentioned. What are others’ sensibilities regarding the approach I take in having SM inform cultural studies? At this point I see Deaf culture as including the following: processes around a visual language; specific gaps faced due to living in a hearing world, with strategies/processes for bridging these gaps passed on through social interaction (some of these gaps are prescribed due to being hearing-impaired and some are the result of hearing control and paternalizing of Deaf people); the role of the subject as not only a carrier of practices, but, because of the placement of DHH within a larger hearing society and world, as capable of bridging gaps in quite creative ways, which in turn serve to inform society.

PROJECT ABSTRACT:
Delivery of products, services and opportunities to Deaf and hard of hearing people presents challenges to educational, business, social, medical, religious, and other organizations. While the goals of these kinds of organizations may differ, each can benefit from an understanding of how DHH learn, process, and use the services provided, presentations made and materials used by these organizations. The types of questions needing to be answered include: “Where or to whom do DHH turn when faced with barriers, problems, decisions, and other choices? What happens that leads them to the sources they use? What questions are they trying to answer? What kind of help do they get there? What do they do with the help? What hindrances are there? What confusions do they experience with the source? What are their feelings about the source?” With insight into these issues, organizations can more effectively introduce new technology, design programs and services, and deliver services. Service and product provision to DHH regularly includes untested assumptions about the needs and wants of the consumer.

The Deaf Hospice Volunteer Training Program, spearheaded by efforts of the College of St. Catherine, St. Paul, MN, has as its goal the establishment of a culturally and linguistically appropriate hospice volunteer training program, that will effectively train Deaf people as hospice volunteers. This research uses Brenda Dervin’s actor-centered, Sense-Making methodology and associated interview technique in the interviewing of DHH users of hospice care, both as hospice patients and relatives of those receiving hospice care. The research will generate a combination of quantitative and qualitative results that will explore the issues of death and dying as well as the experiences of DHH with hospice. A suggestion for program design will be presented to the Hospice Program. The research also has implications for continuing Deaf culture research.

REFERENCES:
(For references to works by Dervin and colleagues, see Dervin’s writings: Chronological listing.)

Hogan, A. (1997). Issues impacting the governance of deafened adults. Disability and Society, 12 (5), 237-258.

Lane, H., Hoffmeister, R. & Bahan, B. (1997). A Journey into the deaf-world. San Diego, CA: Dawn Sign.

Lane, H. (1992). The mask of benevolence: Disabling the deaf community. New York: Alfred A. Knopf.

Linderman, A. (1997). The deaf story: Themes of culture and coping. Unpublished doctoral dissertation. Pasadena, CA: Fuller Theological Seminary (Intercultural Studies).

Linderman, A. (1998). A Psychobiography of a Hard-of-hearing Person: Implications for Deaf Culture. Unpublished article, available from author.

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(1) Throughout the article two means of referring to Deaf and hard of hearing people are used. One is to use the full phrase, “Deaf and hard of hearing.” The other is to use the word “Deaf” I use these interchangeably even though there are differences between Deaf and hard of hearing people. The reason for this is that, as it relates to the issues of this article, there are more commonalities than differences. This is born out both by the work of Hogan (1997) and my own (Linderman, 1998).

OTHER MATERIALS BY THIS AUTHOR ON THIS WEB SITE:
See: http://communication.sbs.ohio-state.edu/sense-making/AAauthors/authorlistlinderman.html