This case study it is a part of a larger long-term, indepth qualitative study of social relationships in the lives of people with disabilities. By looking indepth at the experiences of people with disabilities, we hope to identify the processes involved in the operation of formal and informal support systems and develop a better understanding of what it really means for people with disabilities to be a part of community life.
This five year research project started in July 1989 and its goal is to identify and understand how people with disabilities form social relationships with other community members, become involved in community associations and organizations, and participate fully in community life. The study employs qualitative research methods (Taylor & Bogdan, 1984). Data are collected through indepth interviews with people with disabilities, their families, service providers, community members, and other "key informants." Data are also collected through participant observation in the places and situations where the informants spend their time. A detailed field guide guides the team of researchers conducting the observations and interviews. (Note1)
The participants in the large study have been selected according to a sampling procedure referred to as "theoretical sampling" (Glaser & Strauss, 1967) or "purposeful sampling" (Bogdan & Biklen, 1982) whereby informants are selected because of certain characteristics they possess. A random sample of people with disabilities would be unlikely to yield many people who have strong ties and a range of relationships with other community members. Because the goal of the study is to collect information about social supports in the lives of people with disabilities it is important to identify informants who will provide information about community connections.
By the nature, qualitative research methods are flexible and open-ended. While qualitative researchers begin their studies with a research focus and a plan of action, the research design evolves in accord with the emerging findings of their studies. The study design calls for two years of data collection followed by a period of intensive data analysis stage for the following six months. Based on this analysis, the research design was refined according to the findings to date. The data analysis resulted in a series of case study reports (Yin, 1989). This case study is one of the outcomes of this first stage of data analysis.
The Case Study
This case study focuses on a pair of people. Melvin White, a 77 year old white man who has severe disabilities and Lori Salerno, a human service worker who provides personal assistance to Melvin.(Note2) The goal of the study is to gain an indepth understanding of the supports Lori provides and the role of this support in connecting Melvin with the community. Melvin has spent over 60 years of his life in state institutions for people with mental retardation. When he was selected as a participant in the study he had lived in the community for four years. There were several rationales for selecting Melvin to participate in the study. First, it was judged important to include elderly people in the study in order to gain an understanding of community relations in the lives of individuals in this age group. Melvin is the oldest participant in the study. Second, it was of great interest to learn how a person who has been cut off from society for such an extended period of time is (or is not) able to gain access to the community. Third, Melvin has severe disabilities and needs assistance in doing most things, including going places, moving around, eating, going to the bathroom, and communicating with other people. Melvin receives personal assistance six hours a day and, according to our initial information, his support person, Lori Salerno, has been instrumental in facilitating his participation in community activities and environments as well as his contacts and relationships. Lori was described to us as a "bridge-builder." We were told that Lori was Melvin's friend, as well as being his key support person. It was considered important to learn how such a relationship came about and what it means for both Melvin and Lori, as well as learning from what was described as successful ways to facilitate participation in community life. And fourth, Melvin's speech is very difficult to understand, and he has no communication board or other aids to assist him. We thought it would be important to learn how a person, who has such great difficulties communicating, makes friends and contacts with other people.
Given the reasons for including Melvin White in the study the initial focus was mainly on learning about his and Lori's relationship, and Lori's role in facilitating Melvin's communications, connections, and relationships.
Melvin and Lori spend six hours a day together, Monday through Friday, 9 a.m. to 3 p.m. They usually start the day by reading the paper. They also have their "routine," as they call it. That is, they usually do certain things on certain days. For example, on Mondays they go to the senior citizen program in the neighborhood, on Tuesdays they go swimming, on Wednesdays they most often go to the institution where Melvin used to live to visit his friends there. Fridays, on the other hand, are open for activities like going to see the doctor, or to do fun things at the spur of the moment. These activities usually keep them busy till noon. Two or three times a week they go and eat lunch at restaurants downtown and Melvin's friends sometimes accompany them for lunch. In the afternoon they attend to things Melvin needs to do around the house such as laundry, or calling Melvin's friends or relatives. They might also go shopping or attend to other things Melvin needs to get done. Their routine is quite different during the summer when they do more outdoor activities like fishing, attending outdoor concerts, going on boat tours, to a summer camp, and so on.
Data Collection
Melvin and Lori have participated in the study for a period of two years and participant observation has been the main method of collecting data. Both of them readily agreed to participate in the study and they have made a point of involving me in the things they do together.(Note3) Melvin had his own reasons for becoming involved in the study. He sees the study as being important and is proud of having been asked to contribute to our understanding of how people with disabilities can become a part of the community.
I have participated in both their summer and winter routine. I have also gone with them on a whole-day trip to visit Melvin's 81 year old sister, who lives in a small town a few hours drive from Newtown, the city where Melvin now lives. I have spent time with Melvin at his apartment, gone to social events and meetings with him, had lunch with him and his friends, and attended a public hearing where Melvin testified in support of closing the institution where he once lived. I have also visited him in the hospital when he was ill with pneumonia and accompanied him when he has visited friends in hospitals. I have celebrated his birthday, gone with him to the State Fair, been invited to the baby shower he threw for Lori, and so on. Although Lori has been with Melvin much of the time I have spent with him, I have also made a point of spending time with him when Lori is not around, in order to have a comparison between her support and the support he gets when she is not around. In short, I have spent time with most of the people Melvin spends his time with, such as the people who share his apartment, the staff who work there, his friends, and the people he encounters in the community.
At the outset I conducted weekly participant observation sessions, after a period of a few months the participant observations were reduced down to a bi-weekly observation with a weekly phone contact. In addition to participant observation I have conducted in-depth interviews with both Melvin and Lori, as well as interviewing some of Melvin's friends.
The formal interviews were tape-recorded and then transcribed. Each observation session resulted in written field notes with detailed accounts of the event observed. In all, the data collected have resulted in roughly 750 pages of field notes, transcripts, and other documents such as Melvin's draft of his autobiography, the speech he delivered at the open forum, and newspaper articles about Melvin.
Through the course of the study I have come to know Melvin and Lori quite well. I know their habits, their preferences, and their modes of interacting. I have shared their world for two years and have participated in their struggles, worries, disappointments, and celebrations. I have shared some very difficult things with them, like when Melvin almost died from pneumonia at Christmas time. I also shared the happy events, such as the birth of Lori's first son. Participant observation is a labor intensive research method but it is the most effective way to learn to understand people's lives and experiences and the meaning they attach to these experiences. Like Taylor and Bogdan (1984) have noted, "We get to know (people) personally and experience what they experience in their daily struggle in society" (page 7).
Data Analysis
In this study, as in other qualitative research, data analysis is inductive: the findings emerge from the data. Data analysis has been ongoing throughout the course of the study. After each observation or interview I wrote extensive observer's comments where I kept track of emerging themes and patterns, insights and hunches to follow up on in future observations or interviews. To the extent possible, each observation or interview has built on the previous ones, and the data already collected have guided further collection of data. In addition to keeping track of insights through detailed observer's comments at the end of each set of field notes, a couple of extensive analytic memos were written to summarize what I had learned to date and develop a plan for the coming months. I kept checks on my insights and hunches by asking follow-up questions to Melvin, Lori, and/or some of Melvin's friends. This confirmed many of my insights and led me to drop or modify others. A further check on the data analysis was built into the larger study through sharing of data and analytic memos with the research team, and a group discussion of findings. Taylor and Bogdan (1984) refer to this approach to guard against researcher's bias as "triangulation." The term triangulation is also used to refer to ways qualitative researchers draw on different types and sources of data and check out accounts from different informants to gain a deeper and clearer understanding to make sure that their insights are valid. Both these forms of triangulation were used in this study.
The analysis during data collection was refined and checked out during the intensive analysis stage. This was done by a thorough reading and re-reading of all the data, comparing different pieces of data relating to the themes and patterns already identified. At this stage new insights and concepts were developed and added to the already gained insights. The method of analysis used in this study has a strong resemblance to what Glaser and Strauss (1967) call a "constant comparative method," an inductive analytical approach for developing concepts and insights from qualitative data.
Field Work Among People with Disabilities
A number of qualitative researchers have studied people with disabilities (Bercovici, 1983; Bogdan & Taylor, 1982; Edgerton, 1967; Ferguson, 1987; Ferguson, Ferguson, & Jones, 1988; Goode, 1984; Groce, 1985; Murray-Seegert, 1989). Qualitative researchers from the field of developmental disabilities have written books describing qualitative research methods in general, but drawing heavily upon research with people with disabilities (Taylor & Bogdan, 1984). This has provided qualitative researchers in the disability field with valuable guidelines and information. Researchers have discussed the use of qualitative research in specific areas within the disability field such as in special education (Stainback & Stainback, 1984). They have also addressed the difficulties qualitative researchers may encounter when studying people with disabilities in general (Biklen & Moseley, 1988), or addressed specific areas of concern such as ethical issues that may arise during fieldwork (Taylor, 1987). Like other qualitative researchers who have conducted field work among people with disabilities, I faced some of the problems discussed in the literature. I will only discuss one of these here: the challenge of studying people with limited use of speech. The greatest challenge at the outset of the study was my inability to understand Melvin's speech. Biklen and Moseley (1988) have specifically addressed problems that arise when qualitative researchers study informants whose language may be limited. They suggest that in such situations researchers should rely mostly on participant observations over an extended period of time, in varied settings, get to know the person through spending time with them in their natural environment, and use significant others to gain information. All these strategies were employed in this study. Yet, the importance of language and the dependence of qualitative researchers on language provides a challenge when field work is conducted with people who have difficulties communicating. My inability to understand Melvin made me totally dependent upon Lori to translate between us. At first I found it very difficult to figure out how to communicate with Melvin under these circumstances. I wanted to direct my interactions toward him and did not feel comfortable asking Lori questions about him, in front of him. At the same time it was hard not to direct my questions to Lori and not to look at her while talking to Melvin, because she had to do most of the talking for him. The way I handled this was to try to balance my communication between them and try to talk to both of them at the same time. It took me a few months to learn to understand Melvin's way of speaking and I am no longer dependent on Lori to translate what he says. Although these communication problems were a challenge for the first few months, this turned out to have its advantages because this gave me first-hand and very valuable insights into the communication difficulties Melvin encounters. This also helped me realize and appreciate the importance of Lori's role as a translator between Melvin and other people.
My difficulties in understanding Melvin also gave me insights into how other people may feel when they can not understand him. It takes a great deal of effort for Melvin to say one sentence and sometimes he only manages to say half a sentence at a time. If Lori is not around to translate, Melvin may have to repeat things many times, each time making more effort to be understood. I would feel very uncomfortable when Melvin had repeated a sentence five or six times with great difficulties and I still did not understand what he said. I reflected on the communication difficulties in many of my observer comments at the outset. For example, I went swimming with Melvin and Lori early on in the study. The three of us were in the van outside the apartment building and ready to take off to the swimming pool when Lori had to go back up to the apartment to get something she had forgotten. Melvin and I waited in the van and I tried, pretty unsuccessfully, to carry on a conversation with him. Afterwards I wrote the following as observer's comment: