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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