FICTIVE FAMILIES AND THE LIVES OF ADULTS WITH DEVELOPMENTAL DISABILITIES

Transcription

1 FICTIVE FAMILIES AND THE LIVES OF ADULTS WITH DEVELOPMENTAL DISABILITIES Alison Pedlar, University of Waterloo Peggy Hutchison, Brock University Background In Canada, people with developmental disabilities were disenfranchised to such an extent that institutional living was seen as the best way of relieving families of the burden of care. Families who were given few alternatives but to institutionalize their disabled family member, initially experienced a sense of relief. But over time, as the true nature of institutions was revealed, most families felt a sense of guilt and anxiety. One of the most comprehensive discussions of the effects of institutional life came from Goffman (1961) in his work on total institutions. Goffman identified distinctive features of total institutions, including the notion of "batch living." Isolated from families who might monitor these settings, institutions for individuals with developmental disabilities were typically characterized by collective regimentation and forced social relationships. It was acknowledged that there was a fundamental incompatibility between the structure of the large, total care institution and the need of the individual for meaningful relationships, particularly with family. The leisure literature has demonstrated both the relevance of social relationships to health and wellbeing in general (Coleman, 1993; Iso-Ahola & Park, 1996; Labonte, 1996), and the importance of social relationships and family in the lives of individuals with disabilities (Hutchison & McGill, 1998; Mactavish, Schleien, &Tabourne, 1997). The closure of large institutions and the movement of residents with developmental disabilities to group homes in community settings was seen as a way of fostering normalcy, in that the homes, at least physically, were like other homes in the community. For many people with disabilities who had been cut off from their families for years, there was the hope that people would be reunited with their families (Farlow & Lord, 1987), but there was also the possibility that the social organization within the community home would evolve to resemble what Gubrium and Buckholdt (1982) have described as fictive families, wherein family status is assigned to non-related residents of a household. The Study This paper will report on a study of the lives of adults with developmental disabilities in community settings across Canada. The work presented here will be analyzed within an ethnomethodological framework. As Gubrium and Holstein (1993) point out, relatively little attention has been paid by ethnomethodologists to family-related issues. They further note that analysis of everyday life using this framework can contribute significantly to our understanding of the "interpretive work that persons do to discover, display, sustain, and otherwise manage their everyday realities" (p. 600). Within ethnomethodology "commonsense features of everyday life are studied and analyzed as objects in production" (Gubrium & Holstein, 1993, p. 600). This analysis is not concerned with "ethnomethodological experiments" where the researcher engages in creating an out-of-the-ordinary situation and then studies the ways in which people make sense of that new situation (Patton, 1990). We are, however, concerned with understanding how people manage their everyday realities in situations which may be considered out-of-theordinary, inasmuch as adults with developmental disabilities often live with several unrelated people in a residence that is part of a human service organization. Qualitative data gathered during 141 in-depth interviews with 52 adults with developmental disabilities, 26 family members, and 63 staff and other support people in 5 communities in Canada, provided a rich base from which we can begin to understand the social relationships and interactions of fictive families in human service organizations, particularly group homes. Accordingly we have carried out a secondary analysis of these data from an ethnomethodological perspective. Here, our purpose is to understand family-making as it occurs within the community living situations of adults with developmental disabilities. Data from the tape-recorded interview transcripts were organized using the NUD*IST qualitative software program. This program assisted in data management of the many categories and patterns that were contained in the information people gave to us. In this secondary data analysis, we were guided by sensitizing concepts (Blumer, 1969) which have particular relevance to understanding the construction of relationships within fictive families, for example, obligation, responsibility and expectations (Stack, 1974). Similar concepts are, of course, associated with biological families and kinship relationships. As well, woven into the interview data was language concerned with more obvious familial assumptions such as "family", "brother", "sister" which, when used in conversation about nonkin relationships, suggested the presence of fictive families in people's everyday realities. Findings Community living residential arrangements for adults labelled developmentally disabled varied from congregate living with up to 8 people in boarding homes, to a person living alone with paid support. The majority of people

2 lived in group homes with three or four other adults and paid support staff. Other arrangements included foster parent situations and the sharing of a home with a paid caregiver. In general, people we met who lived in group homes had less contact with their natural families than did people who lived in non-group home situations, with paid support. Of significance was the finding that the organization of people's residential arrangements influenced the sort of fictive family that existed. There were two principal forms of fictive family in the lives of these people those involving social relations with people who were paid to care for them (i.e., staff/workers), and those involving other labelled people who lived in the same home. Colin lived in his own home, with 24-hour paid support. He was one of the few people we met who were supported by an innovative form of service called a microboard. His paid staff, Clare, was very clear about her sibling-like relationship with Colin: Question: Do you think of yourselves as a friend or more of a worker? Clare: Oh, I think Colin is my brother... we're more like a family. Everybody asks me, well, what's he like and stuff, and I just say, well, he's like my brother, I just treat him like my own brother. Josephine lived with her parents, again with the help of a microboard and 24-hour paid support. Her support staff, Jean, said she didn't see herself as "Josephine's worker" and the biological family appeared to have melded with Jean into one fictive family, as described by Melanie, Josephine's mother: Melanie: I personally don't see Jean as a staff person either. She has been more like a daughter. She travels with us on holidays and my husband, Josephine, and myself, she [Jean] does all the medical appointments and everything and we are quite comfortable sharing our home together, just like a family. Quite different was the situation for some people who lived in more traditional service arrangements in group homes and boarding houses. Steve lived in a group home and his worker, Karen, spoke of the social distance that existed between Steve and his biological family. Question: In terms of family, he mentioned a large family, his brothers, does he see his brothers? Karen: The one person he sees most is his aunt. She's like a mother figure to him... but the rest of the family he doesn't see them much... When there is a special occasion like father's day or Christmas they will call to make sure that he has a place to go, because I find that they feel that's their responsibility. If he has a place to go, then they say 'fine', but they wouldn't invite him to the family thing. That "place to go" often meant spending special occasions with staff who had become Steve's fictive family. Tanya, a young woman with complex disabilities, also lived in a more traditional group home situation with extensive support services. She had found comfort and reassurance in the loving relationship she had with another person who lived in the group home. Staff described her situation: They snuggle and verbalize to each other to their own sounds; there's a sort of purring Tanya does when she's quietly content, and she would do that with Robyn. Then we would have little dances in the living room... this is your home [Tanya]. Nick's living arrangement was different again. He shared a home with his caregiver/worker, Fred. When recounting Nick's recent interest in meditation, Fred spoke with great enthusiasm, seeing this as a significant accomplishment for Nick. Sounding more like a parent than a service worker, Fred said of Nick choosing to pursue meditation on his own: That's why I am very proud of him. Because he has made his own choices on this and he has found his strength in it. As significant as family and other social relationships are to individual health and well-being, for some people the only relationships they had were with staff. Not surprisingly, then, they acted as fictive families. In addition, some staff, while unsure of quite how to proceed, were nevertheless keen to enable individuals to connect with their natural families. For instance, Keith talked about his wish to travel to Australia to visit his sister. Staff had taken on the responsibility for seeing his dream realized and had organized several fund-raisers to help him buy his airplane ticket. Meanwhile, his relationship with the rest of his family remained tenuous at best. Discussion As ethnomethodology suggests, understandings and assumptions are "taken for granted by people in their everyday settings where they are so deeply understood that people don't even think about why they do what they do" (Patton, p. 74). For the member who is not part of this ordinary, routine, everyday life, at first glance the presence of fictive families may be missed. What this examination further highlights is that fictive families are really only a partial solution to the weak social networks experienced by many people with developmental disabilities. Those people in the study who had strong relationships with their real families were better served. Support services which encouraged strong relationships between family members, as well as the blending of paid support into fictive family relationships, tended to be those that allowed for individualized support and control. They were also those services which accessed the community, by encouraging inclusion in education, work, and leisure pursuits. This

3 suggests that systems that depend solely on the development of fictive families to respond to people's need for social relationships will not move us much beyond the situations that existed for people in the world of the institution. References Blumer, H. (1969). Symbolic Interactionism. Englewood Cliffs, NJ: Prentice Hall. Coleman, D. (1993). Leisure based social support, leisure dispositions and health. Journal of Leisure Research, 25(4), Farlow, D., & Lord, J. (1987). Reuniting families: A resource guide for family involvement in the closing of institutions. Vancouver: Family Support Institute. Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. Chicago, IL: Aldine Publishing Co. Gibrium, J. F., & Buckholdt, D. R. (1982). Fictive family: Everyday usage, analytic, and human service considerations. American Anthropologist, 84, Gubrium, J. F., & Holstein, J. A. (1993). Phenomenology, ethnometholodogy and family discourse. In P. G. Boss, W. J. Doherty, R. LaRossa, W. R. Schumm, & S. K. Steinmetz (Eds.), Sourcebook of family theories and methods: A contextual approach (pp ). New York: Plenum Press. Hutchison, P., & McGill, J. (1998). Leisure, integration, and community. (2 nd Ed.). Concord, ON: Leisurability Publications, Inc. Iso-Ahola, S. E., & Park, C. J. (1996). Leisure-related social support and self-determination as buffers of stress-illness relationship. Journal of Leisure Research, 28 (3), Labonte, R. (1996). Community, empowerment and leisure. Journal of Leisurability, 23 (1), Mactavish, J., Schleien, S., & Tabourne, C. A. (1997). Patterns of family recreation in families that include children with a developmental disability. Journal of Leisure Research, 29 (1), Patton, M. Q. (1990). Qualitative evaluation and research methods. (2 nd Ed.). Newbury Park, CA: Sage Publications. Stack, C. (1974). All our kin. New York: Harper & Row. Alison Pedlar, Department of Recreation and Leisure Studies, University of Waterloo, Waterloo, ON, N2L 3G1, Canada. Phone: (519) , Ext [email protected]\vaterloo.ca

4 ABSTRACTS of Papers Presented at the Tenth Canadian Congress on Leisure Research May 22-25,2002 Faculty of Physical Education and Recreation University of Alberta Edmonton, Alberta Abstracts compiled and edited by Edgar L. Jackson CCLR-10 Programme Committee Karen Fox Ed Jackson Gordon Walker Copyright 2002 Canadian Association for

5 The Canadian Congress on Leisure Research is held under the auspices of the Canadian Association for Leisure Studies Le congres canadien de la recherche en loisir Se tient sous les auspices de L'association canadienne d'etudes en loisir BOARD OF DIRECTORS / CONSEIL D'ADMINISTRATION President / President Susan Markham-Starr Acadia University Treasurer / Tresorier Robert Soubrier Universite du Quebec a Trois-Rivieres Past President / President-sortant Edgar L. Jackson University of Alberta Secretary / Secretaire Linda Caldwell Pennsylvania State University Directors / Directeurs Wendy Frisby, University of British Columbia Tom Hinch, University of Alberta Peggy Hutchison, Brock University Jennifer Mactavish, University of Manitoba Lisa Ostiguy, Concordia University Stephane Perrault, Universite du Quebec d Trois-Rivieres Jerry Singleton, Dalhousie University Bryan Smale, University of Waterloo Paul Wilkinson, York University