PERSONAL RELATIONSHIPS AND SOCIAL NETWORKS: FACILITATING THE PARTICIPATION OF INDIVIDUALS WITH DISABILITIES INTO COMMUNITY LIFE

NOTE: All names used in this bulletin (both of individuals and organizations) are pseudonyms.

Introduction

In the past few years, there has been increasing emphasis on facilitating the personal social integration of individuals with disabilities. Such efforts (e.g., bridge building, circles of friends) try to establish regular contacts between people with disabilities and typical community members. The goal of these efforts is to promote close ties between individuals with and without disabilities and rests on the belief that such freely-given relationships will lead to the full inclusion of people with disabilities into society.

Between 10 and 15 researchers at the Center on Human Policy are engaged in a coordinated series of local qualitative studies. The Community Study, which commenced in 1988, focuses on the meaning of living in the community for people with mental retardation and other developmental disabilities. In this study, we wanted to learn what living in the community is like for people with disabilities, and how they become connected with others. While most studies have shown that people with disabilities are isolated, we chose to focus on people who are seen as having connections with others. We wanted to learn about their personal relationships and social networks, as these are generally taken to be indicators of a person's social integration. The other studies in the series began in 1990 and focus on community places that welcome people, on the role of generic services in people's lives, and on the personal impact of supported employment. The examples and policy implications indicated here are drawn from the Community Study, but have been informed by some of the newer studies.

Even though the individuals in our study were nominated to us as being "well connected," we have found that many remain isolated from their communities, and do not know many people outside of their families or people who are paid to be with them in some capacity. These individuals often have no more than one, two, or three friends.

Despite these difficulties, many of the people in our study have established a variety of personal relationships and are welcomed and included in certain settings or groups of people. For many of the people, involvement with others, especially with nondisabled people, does not simply happen. Often a person facilitates this involvement. This individual (who may be a family member, a friend, a service provider, or someone else) not only assists the person with a disability, but also arranges opportunities for interactions with others. Whether planned or spontaneous, it seems that this effort to bring people together is a necessary process.

For some of the people in our study, when they are included within certain groups or settings, the people in those environments possess a philosophy of inclusion. While this philosophy may not specifically mention people with disabilities, there exists an ethos of welcome and inclusion of individuals who have been marginalized by society.

We found that personal relationships may be based on familial ties or obligations; affection and/or love; or a personal commitment rooted in a personal set of beliefs.

We also found that in a few cases, real friendships, based on affection, love, and commitment, can occur when one of the people is paid to provide care for the other (e.g., staff person, personal care assistant, foster parent). On the other hand, some unpaid relationships (e.g., volunteers) may lack feelings of mutuality and commitment.

Whenever "staff" and "clients" become friends, the people in our study are clear on one point: in order to establish a close relationship, they had to transcend the traditional "staff/client" roles and redefine their relationship with each other. Thus, "Lori" (see "Problems in Paradise," p. 4) supports herself and her daughter on the salary she receives to assist Melvin, who has become one of her closest friends. Melvin and Lori experience a mutuality in their relationship that is typically not found in staff/client contacts.

The following articles describe the situations of people with disabilities who have developed some personal relationships or have been welcomed into a particular group or setting. These articles provide descriptions of what people's lives and connections are like, and illustrate the points made above. In "Singers United for Peace," and in "Tony Santi and the Bakery," the authors show how an ethos of including a wide variety of individuals results in the acceptance and welcome of people with disabilities. In "Problems in Paradise," we read about a staff/client relationship which grew into a close friendship, and the difference that one person can make in the life of another. Finally, in "But They Need Me!" we learn about a woman who is very much a part of her family, giving and receiving support within that circle.


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