Integrating individuals with intellectual disability into community life has been a central goal of the disability movement for more than 30 years. Integration, although defined in various ways, is commonly thought of as a process that brings people together with and without a disability in shared physical settings where meaningful social interactions can be fostered and maintained (Hutchison & McGill, 1992; Nirje, 1985; Wolfensberger, 1972). In particular, the social aspect of this process--social integration--advanced as a key to ensuring that people not only live in but are also members of their respective communities (Wolfensberger, 1972, p. 49).
Fundamental to this idea is that being of the community positively influences the life quality of individuals with intellectual disability (Bogdan & Taylor, 1987; Schalock, 1996; Haring, 1991; Wehmeyer & Schwartz, 1998).
Connecting these ideas, the recreation literature often advances social integration and quality of life as positive outcomes of community-based leisure programs that enable interactions between individuals with intellectual disabilities and their peers without disabilities (Bullock & Mahon, 1999; Hoge & Wilhite, 1997; Hutchison & McGill, 1992). For participants with a disability, these interactions are beneficial because they present opportunities to engage in meaningful and age-appropriate activities, provide exposure to a range of activities that may become the basis for subsequent activity choices, foster social relationships with same-age peers without disabilities, promote physical and psychological health, facilitate skill development, and enhance perceptions of community membership (Browder & Cooper, 1994; Schleien, Ray, & Green, 1997). Participants without disabilities also benefit from recreation that includes individuals with intellectual disabilities. For example, by getting to know these individuals, people without disabilities begin to focus less on individual differences and more on their shared interests in recreation (Green, Schleien, Mactavish, & Benepe, 1995). In turn, this shift in focus helps to generate greater awareness and acceptance of the diversity in our society.
Despite recognizing the tremendous potential of leisure and recreation for enhancing social integration, research continues to indicate that this potential is not being fully realized in the lives of people with intellectual disabilities across their lifespan (Pedlar, 1992; Pedlar, Lord, & Van Loon, 1990). Thinking about possible reasons for this gap between potential and reality, it seems that one explanation may lie in our approaches to studying social integration, quality of life, and leisure. Traditionally, knowledge about these concepts has been generated from the perspectives of researchers, service professionals, families, caregivers, and others who work with people with intellectual disabilities. The view points of individuals with intellectual disabilities often have not been included, largely because of ongoing debates about the most effective means of including these individuals in the research process and ensuring the credibility of researchers' interpretations of the findings (see for example, Biklen & Moseley, 1988; Dattillo, Hoge, & Malley, 1996). This "by-proxy" approach to learning about socially constructed concepts--like social integration, quality of life, and leisure, which mean different things to different people--has been criticized for producing an incomplete--and possibly--inaccurate body of knowledge (Biklen & Moseley, 1988; Goode, 1988; Mactavish, Lutfiyya, & Mahon, 1998).
Lifespan and Disability Research Project: Participants, Purpose, and Procedures
With the applied line of thinking as a step towards realizing leisure's full potential for promoting social integration, the Lifespan and Disability Research Project included individuals with intellectual disability, family members/caregivers, and service providers in a study designed to generate multiple perspectives about the factors that support and constrain social integration. Conducted over two years, the project incorporated focus groups and interviews to collect data and follow-up meetings to confirm the findings. The focus groups, 18 in total, were used to collect the perspectives of participants with disabilities and family members/caregivers. Divided according to whether they lived in an urban or rural setting and into age groupings (i.e., 12-21, 22-34, 35-59, and 59-plus) that reflected the lifespan nature of the project, eight focus groups included individuals with a disability. These individuals (n = 32, 18 females and 14 males) had varying degrees of intellectual disability, ranged from age 17 to 82 (mean age = 38.94, SD = 20.9 years), and came from a variety of community-living situations (e.g., urban, rural, group homes, independent/supported living arrangements). The 10 remaining focus groups involved family members and/or caregivers of children with disabilities. These focus groups also were evenly split between urban and rural settings and included informants who could provide snapshot perspectives of social integration at different life stages (i.e., 0-11, 12-21, 22-34, 35-59, and 59-plus). Forty service providers shared their views about social integration via in-depth personal interviews. Semi-structured questioning routes were used to facilitate the focus groups and the interviews. Generated from a comprehensive literature review and pilot tested before use, the questions concentrated on factors previously identified as having some influence on social integration (e.g., recreation, family support). Key theme and constant comparative methods were used to analyze the data from the focus groups and interviews. The results of the analyses were presented, in a series of follow-up meetings, to representatives from each informant group to ensure their accuracy and trustworthiness.
Findings and Discussion
Concentrating on the findings that directly link leisure and social integration, two interrelated themes--friends and structured recreation--emerged consistently from the perspectives of participants with intellectual disabilities, family members/caregivers, and service providers. Engaging in meaningful social relationships--having friends--is an intuitively logical component of social integration. As a result, it is not surprising that the research participants consistently identified friends as a critical aspect of social integration across the lifespan. Illustrating this theme, Sylvia, an older woman with a disability, noted:
Social integration ... means feeling like I'm a part of things. I don't work, but I go to the Salvation Army and a women's travel group ... when I take part in things with my friends it makes me feel good--like I'm part of it. When I don't (take part), I feel left out.
Building on Sylvia's points, Martin exclaimed:
I know what integration means! It means coffee with friends, walks to the mall with friends, getting together with people you like to do stuff you like, having a good time and being included.
Other participants added to Sylvia and Martin's comments by declaring:
Being with my family! Going to my girlfriend's house. Going out--to the bar, dancing--with my friends. Not being bored. Belonging.
Clear from these participants' words, is an understanding of social integration that is rooted in the sense of belonging that comes from sharing time, activities, and experiences with families and friends. On the surface, this understanding appears to be consistent with discussions of social integration in the literature. That is, being involved in meaningful social relationships within a variety of contexts (e.g., recreation, family) is often presented as a key outcome of social integration, which, in turn, influences perceptions of community membership, belonging, and quality of life (Hutchison & McGill, 1992; Keith, 1990).
A closer examination of the literature, however, suggests that "true" social integration is contingent upon interactions and relationships between individuals with and without intellectual disability (Wolfensberger & Thomas, 1983). Indeed, this view is typical of the family members/caregivers and service providers who participated in the Lifespan and Disability Research Project. The participants with intellectual disabilities, however, subscribed to an alternative perspective that acknowledged the importance of relationships with peers with disabilities in enhancing perceptions of social integration. This point is underscored by Amanda's thoughts on having friends with and without disabilities:
I go to school with other kids like me. But I also know other kids who aren't like me ... don't have to go to special class--don't have a disability. To me, that isn't the same as being friends. Friends are people I like and like me ... I guess anybody at school could be my friend ... but only Dawn really is (a classmate with a disability). We hang around everyday. I like coming to school to be with Dawn.
Put another way, Amanda's thoughts suggest a meaning of social integration in which a sense of belonging is based on friendships with people--independent of whether these people have a disability or not. Without delving into the debate about the meaning of "friendship," it seems that social integration is not an outcome exclusive to interactions between people with and without a disability, but is equally, and perhaps more frequently, the result of relationships that include peers with disabilities.
While standing alone as a theme that facilitates social integration, friendship also was linked to the contexts in which the participants were active on a regular basis (e.g., school, work, recreation). There was evidence, albeit rare, of relationships that endured across settings and over time. In these situations, family members and/or service providers supported (e.g., transportation, encouragement) the participants' efforts to maintain and extend their connections with friends. Explaining the importance of her family in supporting a decade long friendship with a former high school classmate, Andrea noted:
I've known Rhonda since high school. Since then we've done everything together--Special Olympics, Garth Brooks concerts, shopping. When it's too cold or dark, my Dad drives us to wherever it is we want to go. We also talk on the phone every night. My parents even got me my own phone because they said they could never use theirs because we were on it so much.
Andrea's experience was not, however, the norm. Most of the participants' friendships were confined to the contexts in which they were initiated and seldom included interactions in other situations and settings. Talking about this compartmentalized approach to friendship, one woman explained:
When I go to work, I'm with my work friends. My friends at work are important to me. It's like being part of a team ... we work together making lawn chairs, we work fast together. We get along. After work, I go home. My work friends go to where they live. So after work, I do things with Lana and Alexa--they're the two friends I live with.
Limited opportunities and other constraints (e.g., transportation), therefore, resulted in context specific friendships that made it difficult for the participants with disabilities to socialize with their friends across different settings and situations. Consequently, while friendship played an important role in fostering social integration, the compartmentalized nature of these relationships created disconnected "islands of social integration" that varied with the contexts in which people interacted on a regular basis.
Among the many contexts (e.g., school, work, family) in which people frequently interacted, recreation was commonly cited as one of the settings most likely to foster social connections. Supporting this perspective, one service provider commented:
The opportunity to meet other people, that's really important, and where do we do most of that? It's our leisure and recreation ... so when you're going to that place, you have something in common to talk about and do ... and that's how we often start relationships.
While viewing recreation as an important context for social integration, family members and caregivers also expressed concerns about potential risks their children may encounter in these settings. Expanding on this notion, one mother noted:
I've been pretty good at trying to let him be independent. As a mom, it's really a pleasure to see, to know that he's going out, having a great time. But I still worry, you know, are they going to keep tabs on him? What's he going to do? Is he drinking drinks at the bar at the next table when nobody's looking? Sometimes he's probably done that ... so I can't help worrying about what might happen when he's out there.
For some participants with intellectual disability, particularly teenagers and young adults who lived at home with their parents/caregivers, family activities also were identified as important recreation outlets that facilitated social integration within the family:
I hang out with my mom, dad, grandparents ... cousins. We play cards and things like that. Sometimes we go to the bar, sometimes we go camping ... just do regular stuff. We own a boat, my family. We go on trips on the boat and other trips. All summer. My family always eats out on Fridays, always on Fridays. Then we get movies, and have slurpies and chocolate bars after.
Most of the participants with intellectual disabilities, however, recreated in home-based activities that included limited, if any, interaction with other people.
Living on your own makes doing things with other people hard. Your friends can't always come over, aye. And where are you going to find other people? I get to see other people at my travel meetings--if I can get there. The rest of the time it's easier just to do my puzzles and reading. I mostly do activities on my own. Watch TV, listen to music, just do nothing. If I do things with other people--my friends--I'm usually at bowling or the Legion.
It was not surprising, therefore, that the participants with intellectual disabilities generally identified structured recreation activities in the community, not their home-based and usually solitary activities, as key contributors to social integration. Establishing the basis for this theme, Tom, Don, and Cheryl described the importance of structured recreation in fostering their feelings of membership and belonging:
I answered an ad in the paper for a team who needed a dart player. I joined up. Now I'm part of the league, part of a team. We're regulars on Tuesday and Wednesday nights at the Inn. Special Olympics, it's like religion ... it's really important in my life. I've belonged--with Kathy, Holly, Alex, and Cyndi--for years. We all go on trips, socials, play floor hockey. I can see my friends, go places, do things I like--running, I like running a lot, too--it's my club (Special Olympics)! Anything to do with dance. Ballet. And choir. They're my real passions. I want to be a professional dancer. Going to my ballet class is helping me get there. My teacher and my friends too.
Beyond these themes, which cut across the three groups, there were themes that emerged specific to each of the three informant groups. Although the primary focus of our research was on the perspectives of people with disabilities, two issues were identified that are of relevance to recreation service providers. Family members and service providers suggested that personal characteristics have a tremendous impact on the extent to which an individual is socially integrated and the nature of the social integration. Social skills, physical appearance, and personality were frequently cited by service providers. Family members identified disruptive behaviors, visibility of disability, communication skills, social skills, and health problems as factors that influence an individual's potential for social integration. Speaking about her 4-year-old with Down syndrome who has diabetes, one parent said:
"They have to know what to do if [his blood sugar] goes low, they have to know what the signs are if he goes low and he doesn't know and he doesn't have the communication skills to tell you, so that (in our minds) has been an overriding issue. Yeah, I'd love to put him in some play group in the evenings."
The recreation system has attempted to address certain areas, such as social and communication skills, through the introduction of leisure education interventions for people with disabilities (Bullock & Mahon, 1999). Many of the other characteristics, including physical appearance, are reflective of negative attitudes towards people with disabilities, which Hahn (1993) describes as Aesthetic Anxiety. She argues that discrimination is directed towards people with disabilities because such individuals do not present conventional images of human physique or behavior and as a result are often placed in subordinate roles. This reality is at the root of Nirjes (1985) definition of integration, which is based on the word integrity; that is, integration is about people with disabilities being able to be themselves within their communities.
A final theme, specific to service providers and policy makers, was staff and staff training. Both informant groups felt that staff can determine the extent to which people with disabilities are or are not socially integrated. Staff members who encourage choice making and community connections can greatly enhance the opportunity for people with disabilities to be socially integrated. Similarly, staff in recreation settings, such as community centers, physical activity centers, or structured recreation programs, often "make or break" the social integration process. The essence of this theme is contained in a quote from one of the service providers:
It's a challenge [for] staff because I don't think they really, honestly know how to go about supporting people in that area (social integration) ..., [they need] almost a step-by-step, a how-to, to assist people and to support people.
Within the field of recreation and parks, we have come to recognize the value of recreation for enhancing quality of life. Those in the disability movement have pointed to social integration as one important avenue for people with disabilities to achieve life quality. Our research has taken a unique approach to understanding the interconnection of recreation, social integration, and quality of life. By considering the perspectives of people with disabilities and contrasting these perspectives with service providers and family members, we have gained a deeper understanding of this dynamic.
This research can be used to enhance community recreation opportunities for people with disabilities. We have discovered that social integration is not simply about fostering social connections between people with and without disabilities; we must also recognize the value of all social relationships and the need for structures and supports in community recreation that focus on social interaction. This broader conceptualization of social integration can be used to inform community recreation agencies interested in fostering greater inclusion of people with disabilities in their programs and services. The other things we have learned regarding attitudes concerning physical appearance and the need for staff training can be incorporated into staff training as well as broader interventions designed to promote greater acceptance of people with disabilities. We must also acknowledge and address family/caregiver concerns about vulnerability and safety within recreation outside the family context. Overall, it is important for citizens to embrace the inclusion of people with disabilities in all aspects of our communities.
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Mahon, Mactavish, and Bockstael are part of the Health, Leisure, and Human Performance Research Institute, Faculty of Physical Education and Recreation Studies of the University of Manitoba, Winnipeg, Manitoba
Research Update is edited by Dr. Irma O'Dell of Southern Illinois University at Carbondale and Dr. Kim L. Siegenthaler of Appalachian State University.