Melvin White's life and experiences demonstrate clearly how disability policies and practices influence the everyday life of people with disabilities. Melvin has lived long enough to experience the past two service paradigms. That is, the institutional paradigm and the paradigm of community-based services. And his life is now being influenced by the emerging paradigm of support.
Melvin's life in the institutions was characterized by neglect and abuse. After years of struggle he gained his "freedom" and moved into the community. His experiences of being in the community reflect the current criticism of community programs. Moving into the community did not save Melvin from neglect and isolation. He does not suffer from these as badly as in the institution but they still exist in his life. For example, before Lori started working with him, Mel was almost as isolated "in the community" as he was in the institution. And he still suffers from neglect. On weekends he sometimes doesn't get enough food because the staff see it as too much bother to feed him. But, despite the struggles and disappointments in the community, Melvin would never go back to the institution. His experiences highlight the problems in community programs, but he would agree with the critics that although there are problems in community programs they are a far better alternative than the institution.
Melvin's experiences in the community highlight particularly well the difficulties community programs have in achieving the goal of community integration. 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 still spent in this world. He goes to a lot of "programs" like the senior citizen program, the swimming program, and he lives in a "program." All of Melvin's closest friends are from the human service world. The only connections he has outside the human service world is with his family, in church, and casual encounters in restaurants and stores. Melvin is "out" in the community but he is out among other devalued community members. He lives in an apartment in a high-rise in downtown Newtown. Most of the other people who live in the apartment building are also people who have a devalued status in society. These are elderly people, people with all kinds of disabilities, people of racial and ethnic minority backgrounds, people who don't have work, and so on. Melvin may be living out in the community but he is still living with other devalued people. Melvin's connections with other community members are very fragile and his experiences reflect the inability of community programs to help people with disabilities to establish and maintain connections with people outside the human service world. Melvin participates in quite a few community activities and has good connections with a few of his relatives and a few friends. But his connections to people and places in the community, as well as his participation in community activities are primarily dependent on Lori. If she wasn't there to support and facilitate Mel would be very isolated.
Thus, the assistance Melvin needs to participate in the community is not built into the service system. Instead, this assistance has been created as an exception to how the service system is supposed to work. Community-based services are typically over-regulated and bureaucratic (Holburn, 1990). The flexibility that exists is not built into the service system, but is created by individuals within the system who are willing to "bend the rules." This flexibility is sometimes "allowed" within the system as "demonstration projects," or they are created as emergency procedures in extreme cases when people served by the system are at risk of dying. An example of how the system can come up with flexible supports to save people's lives is described by Berkman and Meyer (1988). This was also the case in Melvin's situation. It was not until his 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 supports Melvin needs to become a part of community life.
Melvin wants to move out of the community program where he lives. He wants to have a real home before he dies. His continuing struggle to belong in the community and not in the service system is quite revealing of the failure of community programs to "free" people from the system and connect them with the community. Melvin's fragile successes in the community to date have been made possible and are inspired by what many have called "the emerging support paradigm." The support services that are now being developed under this new service paradigm seem to be the most promising ways to connect Melvin and others like him with the fabric of community life. Yet, we still have a long way to go and a lot to learn about people, communities, and connections before we can make community integration come true.