- About This Bulletin
- Personal Relationships and Social Networks: Facilitating the Participation of Individuals with Disabilities into Community Life
- Singers United For Peace
- Toni Santi And The Bakery
- Problems In Paradise
- “But They Need Me!”
- Policy Implications
- Resource List
The information in this bulletin may be reproduced without further permission; a credit line would be appreciated, and we ask that you inform us of your use of the bulletin. The Center on Human Policy welcomes comments and suggestions.
This bulletin was edited by Zana M. Lutfiyya. Contributors included Bonnie Shoultz, Rannveig Traustadottir, and Pam Walker. We wish to thank our informants and the many other people who have contributed to our thinking about relationships between people of all disabilities. We would especially like to thank Steve Taylor, Bob Bogdan, Susan O’Connor, Julie Racino, and the other Community Study researchers. We would also like to thank Gunnar Dybwad, John O’Brien, and Connie Lyle O’Brien for their contributions to our thinking about the issues, and Rachael Zubal for preparing the bulletin for publication.
This bulletin was prepared by the Research and Training Center on Community Integration, Center on Human Policy, Division of Special Education and Rehabilitation, School of Education, Syracuse University, with support from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research, through Cooperative Agreement H133B00003-90 and Contract Number H133B80048. No endorsement by the U.S. Department of Education of the opinions expressed herein should be inferred.
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.
Singers United for People is a group of people who come together to sing songs of peace and social justice. They rehearse weekly, and perform several times a year at concerts and alternative community events such as peace rallies, vigils, and benefits.
The membership of this choral group includes a diversity of people of varying ages, racial and ethnic background, and abilities. Although most members have no disability labels, there are some people with visual impairments, some with physical impairments and who use wheelchairs, and some labeled mentally retarded or mentally ill. What brings all of the members of the group together is: the director’s interest in creating an inclusive choir, their interest in singing, and their desire to sing about current social issues.
One member of the chorus is Joanne, who is labeled severely mentally retarded and has a visual impairment. She lives in a group home and works in a day activity center for people with developmental disabilities.
Joanne needs many different types of support to be a member of the chorus, including help with transportation and personal mobility, various kinds of assistance with the music, and social support. This support is provided by her group home staff as well as by other chorus members.
The lessons that have been learned about support and friendship for Joanne in the chorus include the following:
- A few people in the chorus provide the most intensive support, and are also Joanne’s closest friends. Over time, the group of people who provide this most intensive, ongoing support has remained almost the same, and has not significantly grown in size. Those who provide this support have been exclusively women.
- Several people in the chorus provide occasional, less intensive support. This type of support tends to be provided by people who are also friends, although it is occasionally provided by people who do not know her well. This group is composed of both women and men. The number of people in this group has increased significantly over the 3 years that Joanne has been a member of the chorus.
- In order to maximize her participation in the chorus and make it as positive an experience as possible, it is essential for there to be ongoing communication between chorus members and the staff members in the home where she lives.
In Joanne’s life, the chorus is one of the only places that is integrated, and where she has the opportunity to establish friendships with nondisabled people other than staff. It is critical that agency staff and others concerned with Joanne understand the dynamics that will help maintain and enhance her participation and membership in this group.
Tony Santi lived with his family in a working class neighborhood until he reached the second grade. Labeled as a “hard case” by his teachers, he was placed into an institution for the mentally retarded when he was about 8 year old. He stayed there until he turned 21, when he was “paroled.” During his years in the institution, Tony acquired a reputation as a “runner,” as he constantly ran away.
As Tony’s family were not prepared to take him in, Tony lived on the streets. He became known at a soup kitchen, and the people there got him into a shelter for homeless men. Tony alternated between a number of seedy apartments and the streets, depending on the money he had. During this time, Tony became connected to a couple of individuals who worked at the shelter. Father Bryan and Martha kept in touch with him and visited him in prison. Tony got to know Father Bryan’s family when he started spending the holidays with them. After getting out of jail the second time, Tony worked for the social welfare organization where Father Bryan spent much of his time. He lived in a number of apartments which he became adept at finding. Tony was also introduced to the people at the Bakery when he helped Father Bryan deliver their bread once a week.
The Bakery is a part time operation. It was founded to provide a good working environment where people of different backgrounds could work together in meaningful labor. The Bakery was seen as a place where those usually left out of the job market (due to disability, age, housework) could engage in part time work. As Tony got to know people at the Bakery, he initiated and arranged for a job there. He has worked at the Bakery for almost 10 years.
The important work of the Bakery is not simply in baking bread, but also in how this work is done. All of the workers have valuable roles in this work and everyone’s contribution is necessary. Baking bread is one way to establish and maintain a small community bound by work and a common purpose. Like Tony, some of the workers would not be viewed as highly skilled or capable on the open market. But there are some ways that everyone at the Bakery is enabled to make a valued contribution to the ongoing work.
Tony has lived much of his life within two human service systems: the mental retardation/developmental disability system as a child and the criminal justice system as a young adult. Since leaving prison for the second time, Tony has managed to stay away from either: his only connection now is a monthly disability check.
Tony still feels the effects of having lived in two institutions. He was cut off from his family and the neighborhood where they lived. Despite his efforts to return home, Tony was never able to do that: they decided that he could not live with them after he left the state institution.
Tony’s support outside of the service system and his involvement with Father Bryan and the others shows that there are accepting people in the community. Individuals with disabilities are not always rejected by prejudiced citizens, but can find a valued place within the lives of other.
Melvin White is tall, thin, 78-year-old man. Gentle and charming, he has severe physical disabilities and uses a wheelchair. He needs assistance in doing most things, including going places, moving around, eating, going to the bathroom, and communicating with others. Because of his physical impairments, it is very difficult for Melvin to speak and his speech in unclear. People who do not know him well have a hard time understanding what he says. As Melvin has grown older, he has lost some of his hearing which has increased his communication problems.
Melvin spent over 60 years in three different institutions for people with mental retardation. In 1985, thanks to a lawsuit, he moved out of the institution and into a group home, where he now lives with three other people who also have disabilities. When asked why he wanted to move out of the institution, Melvin said, “I wanted to be free,” and added that he wanted to leave the institution before he died.
Melvin’s life has been filled with neglect, abuse, and isolation. He has had a very hard life and finds it difficult to remember and think about his life in the institution. But of his life there he says, “the punishments, they were the bad part. Being locked up in the bathroom all day away from everyone. And the fighting, and being away from other people and life outside,”
Moving into the community didn’t bring Melvin the freedom he was hoping for. When he first moved out of the institution, he had to return there daily in order to attend a day activity program, so the institution continued to be a big part of his life. A couple of years later, he “retired” from this, but then spent most of his life in the group home. Instead of being a part of the community, as he had hoped, he was still segregated and isolated from community activities. Moving to the community was therefore a great disappointment to Melvin and he became desperate and depressed. His situation became so serious that some of his friends were worried that he was going to die. He lost weight and his health deteriorated. He seemed to have lost hope, was depressed, and had mostly stopped talking. At this point of group of friends rallied around him and a creative professional within the agency came up with a solution called Melvin’s “retirement program.” This entailed hiring a staff person to work with Melvin 6 hours a day, Monday through Friday.
The person who was hired to become Melvin’s personal assistant was Lori Salerno, a young woman who had previously worked in the group home. Melvin identified her as the person he wanted to work with him, and she agreed to take the position. This new arrangement changed Melvin’s life, and during the three years Lori has been working with him, he has been able to be a participant in community activities. Without Lori’s assistance Melvin would not be able to be out among people and he would only be physically present if Lori didn’t support his participation. Life many other people with disabilities, the successes Melvin has experienced in becoming a part of community life, have depended upon one person. It is the support Lori provides that has made the difference in his life.
This raises the question why Lori has been so successful in facilitating and supporting Melvin’s participation in the community. What make the crucial difference is the relationship between Melvin and Lori; besides being Melvin’s key support person, Lori has become one of Melvin’s closest friends, and it is the mutuality and closeness of their relationship that make her assistance successful. This closeness has made Lori very sensitive to Melvin’s needs and wished. It has also created a harmony between them, and the ease and caring with which Lori performs her support role.
Melvin’s life and experiences demonstrate how disability policies and practices influence the everyday life of people with disabilities. Born in 1912, Melvin has lived long enough to experience close to century of changing policies and practices. Melvin’s life in the institution was characterized by isolation, segregation, neglect, and abuse. After years of struggle he gained his “freedom” and moved into the community. His experiences in the community reflect many of the current problems in community programs; particularly the problems these services have in achieving the goal of community participation. Melvin is living “in the community” but his primary membership in this world is still in the human service world. Most of his time is spent in this world. He participates in may “programs” and most of his closest friend are from the human service world.
Melvin is out in the community but he is out among other devalued community members. his group home is in a remodeled apartment in a high-rise in the downtown area, and many of his neighbors also have a devalued status in society.
Melvin’s connections with other community members are fragile, and his experiences reflect the lack of attention paid by many community programs to assisting people with disabilities to establish and maintain connections with people outside the human service world. Although Melvin participates in community activities, his connections to people and places in the community are primarily dependent upon one person, Lori. If she wasn’t there to support and facilitate, Melvin would be very isolated.
Community-based services are typically over-regulated and bureaucratic. The flexibility that exists is usually not built into the service system, but is created by individuals within the system, often by “bending the rules.” This flexibility is also sometimes found within the system in the form of “demonstration projects,” or it is created as emergency procedures in extreme cases, like with Melvin. It was not until Melvin’s condition had become so serious that some of his friends thought he was at the risk of dying that individuals within the system created the support Melvin needed to become a part of community life.
Anna London is 41 years old and lives with her mother. The first of five children born to her mother and father, she was removed from her parents’ custody at 3 months and grew up in a foster home with very little contact with her birth parents. Between age 14 and 19, she lived in two institutional settings, one of them a school for children with mental retardation, purportedly so that she could get medical care and educational services.
Anna went back to live with her foster parents in 1967 and stayed with them until 1977, when both of them died. She then moved into the YWCA, and later initiated contact with her birth family. In 1979 she and her mother began living together. They have moved a number of times, and their financial situation is such that they are barely able to make it through the month–but they do, together. Anna still has a number of health problems, as does her mother.
Anna sees herself as a person whose role is to help others. This appears to be a meaningful role for her but causes others (mental health professionals and volunteers) some alarm on her behalf; they appear to view her family, who receive most of her help, as people who use her without giving much back in return.
Anna’s Helping
Anna has babysat daily for her brother’s three children for 9 years, accepting whatever they have to pay her. She continues to do so even though her brother and sister-in-law are getting a divorce. She has stayed overnight five nights a week with another sister’s child for the past year. In the past, she has also provided quite a bit of personal care (cooking, cleaning, etc.) for her mother, who has serious heart problems, although they also have a home health aide who takes care of the heavy work such as the laundry. While Anna now has heart problems of her own, and may be providing less of this kind of care, much of her time is consumed in caring for various members of her family.
Anna also helps most of the other people with whom she comes into contact. At church, she helps a woman who is blind so that she can participate more fully. She helps the workers in the service agencies with whom she interacts by calling and leaving “Good morning” or “I love you” messages, and by opening up to them about her feelings, as they urge her to do.
Human Services in Anna’s Life
As a child, Anna was taken from her family by a child protective agency. Probably because she had a cleft palate, she was diagnosed as having “failure to thrive syndrome,” and her very poor parents were seen as unable to care for her. Therefore, she grew up as a recipient of foster and institutional care, but carved an identity as a helper of others within these settings.
Today, Anna is involved with a few community mental health agencies, but appears to use rather than be controlled by their services. At one time, she had regular appointments with a therapist and a case manager. Now she and her mother are in counseling together. She still sees her case manager in yet a third agency that provides community support services to people with psychiatric disorders. Anna listens to what these people have to say, but makes her own decisions about her life.
Additionally, Anna has a volunteer who was recruited by an agency to befriend her. Through this relationship, she has become involved with a broader group made up of people with disabilities and people who were recruited to become their friends.
According to the agencies that serve her, Anna “lives independently” and “isn’t crazy anymore.” Therefore, they could remove her from their rolls. They do not because, they say, they want to continue to make available what one worked called an “alternative community,” made up of service workers and volunteers, that Anna can turn to when she needs some time away from her family. This worker views this “community” as an option for Anna, as a way of giving Anna a choice beyond her family. Through this agency, she could move into a residential setting and job training.
Dilemmas and Perspectives
Anna’s story highlights a number of dilemmas. There is a tension between being helped and helping others. For many people with disabilities, the role of helper is not available because the people in their lives will not permit them to take on this role. For Anna, being a helper as a valued identity, one around which she has built her concept of herself.
The second dilemma arises from an ambiguity: when does a helper become a person who is used by others? While Anna appears to see herself as a helper who holds her family together, her service workers and friends worry that she is being taken advantage of. To change the balance, however, she would have to give up her “helping career,” and some of her family relationships, and instead move into a human service world. Her workers and friends have resolved this conflict by supporting her in the decision she makes.
Lessons Learned from Anna
Anna’s life and identity are tied up in ability to contribute to and provide real help to her family and others. She has been able to use certain things from the service system, like money, volunteers, recreational opportunities, and counseling, to support a life she has chosen. The workers representing the various parts of the system have learned to support her in the decisions she make about her life.
Recognize the inherent limitations of policy. There are no regulations or practices which if implemented, would automatically result in people making more friendships and becoming members of groups. Policies can encourage relationships, but cannot mandate them. However, it is possible to reconsider those policy requirements which make if difficult for people with disabilities to interact with nondisabled people in typical settings.
Review regulations, policies, and practices to eliminate obstacles for friendships. Friendships between nondisabled individuals and people with disabilities may be disruptive to rigid and overregulated human service programs. Regulations, policies, and practices may interfere with the type and quality of interactions that individuals with disabilities may have with others. For examples, some may not be able to invite guests to their group home/residential facility for a cup of coffee or a meal. There may be restrictions on how many nights a person can be away, limiting the possibility of visits or trips with family and friends. Others may have no private space available to them in which they can entertain guests. Restrictive curfews and rigid scheduling of activities severely limits the opportunities that people have to get together.
By simply trying to get together, friends or family may be seen as disruptive to the “ongoing program” in some way. Agencies which are committed to fostering personal relationships will need to tolerate these “disruptions.”
Learn how various social settings operate. Community settings do not operate in the same way as human service programs do. A role of policy makers, therefore, may be to allow time for staff members to come to know and understand a setting. For example, while the residents of a group home might be dropped off en masse at a recreation program for individuals with disabilities, this practice would not be appreciated at an aerobics class or pick-up basketball game. By learning the culture (routines, traditions, expectations, and rituals) of a particular setting, it becomes easier to facilitate a person’s involvement there. This includes the more obvious things like wearing appropriate clothing, but also becoming aware of more subtle activities. At chorus activities, for example, members visit with each other 5-10 minutes before starting. If Joanne consistently missed that “visiting time,” she would miss out on important opportunities for socializing with others.
Recognize the value of interdependence. Some of the expectations that human service providers make upon their clients may eliminate opportunities for individuals to interact with nondisabled citizens. For example, to achieve the goal of “independence,” a staff person may require a person with a disability to arrange and take public or specialized transportation to an activity, rejecting a nondisabled participant’s offer to car pool with the person and others.
Support long-term efforts and commitment>. Helping a person establish relationships or become part of a group may take a long time, and agencies should be prepared to provide support for as long as this takes. It is also important to recognize that when a person is reliant upon staff support, their involvement is vulnerable as the staff people change so frequently. The results of staff turnover may be devastating for someone who is dependent upon the support of one or a few people. Creating opportunities and providing support must be a long term, consistent effort.
Rethink the role of “volunteers.” Many agencies recruit volunteers for individuals with disabilities and then call these people friends. Typically, volunteers make a commitment to an agency and not the individual to whom they are introduced. Volunteers may understand their roles in one way, and the individual with a disability, who has been told that the person is a “friend,” may view them differently.
Additionally, agency personnel may believe that community members who volunteer may offer extensive informal supports for people with disabilities, taking over some staff and support functions, reducing the need for certain paid services. However, providers must not abdicate their responsibility to the people whom they are serving, and should not expect this to take place.
Establish examples of positive interactions. Professional training encourages a detachment between those who are staff and those who receive services. When relationships do form, each party must transcend the “staff” or “client” roles, and create a personal relationship where the primary commitment is to each other. When this occurs, the loyalty of the staff person switches from the agency to the person with a disability. This change may be threatening to the agency, which in turn, may discourage the relationships. Administrators may counter this trend by recognizing and celebrating the personal relationships that do develop and by forming personal relationships of their own with people supported by their agency.
Support efforts that assist people to develop social relationships. Agencies with funding responsibilities and service providers can support practices whose purpose is to explore community associations, help people to develop networks, and support friendships. For example, in a number of states, the Developmental Disabilities Planning Councils have funded demonstration projects that focus on social relationships. In other places, service agencies have reorganized so that relationship support can become a priority. The learnings from these projects need to be collected, disseminated, and made a part of the culture and practices of human service agencies. Anyone aware of such a project may write to us at the Center on Human Policy.
Bulmer, M. (1987). The social basis of community care. Winchester, MA: Allen & Unwin.
An excellent analysis of the hidden assumptions behind the British policy of community care.
Lutfiyya, Z. M. (1991). Personal relationships and social networks: Facilitating the acceptance of people with disabilities. Syracuse, NY: Center on Human Policy, Syracuse University.
An information package, containing an overview article, three articles which describe the experiences of people with disabilities who have nondisabled friends and are part of a network of people, and an annotated bibliography. Three of the articles included in this package are by Zana Marie Lutfiyya and one (“Members of Each Other: Perspectives on Social Support for People with Severe Disabilities”) is by John O’Brien and Connie Lyle O’Brien.
Lutfiyya, Z. M. (1991). “Mighty prophets of the future”: The Orion community. In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 227-241). Baltimore: Paul H. Brookes Publishing Co.
A study of an intentional community that emphasizes relationships and connections between people.
McKnight, J. L. (1987). Regenerating community. Social Policy, 18(3), 54-58.
A critical analysis of current social policy and a proposal that we look at the community–a structure of associations based on consent–to meet people’s needs.
O’Brien, J., & Lyle O’Brien, C. (1991). Sustaining positive changes: The future development of the Residential Support Program, Centennial Developmental Services, Colorado. In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 153-168). Baltimore: Paul H. Brookes Publishing Co.
Contains suggestions for reorganizing an agency so that relationships can be supported and promoted.
Shoultz, B. (1991). Regenerating a community. In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 195-213). Baltimore: Paul H. Brookes Publishing Co.
A story of an agency that reorganized to support relationships.
Taylor, S. J., & Bogdan, R. (1987). On accepting relationships between people with mental retardation and nondisabled people: Toward an understanding of acceptance. Disability Handicap & Society, 4(1), 21-36.
This article outlines the “sociology of acceptance” as a framework for understanding the relationships between people with mental retardation and typical people.
Walker, P., & Edinger, B. (1988, May). The kids from Cabin 17. Camping Magazine, 18-21.
A description of a child’s camping experience made possible with supports based on understanding of the camp’s culture.