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.
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