This part presents a detailed indepth analysis of the supports Melvin receives from Lori. Observing and analyzing this support has been one of the major objectives of this study. Spending time with Mel and Lori has provided some very valuable insights into the importance, meaning, and potentials of community supports.
A close indepth observation of the supports Lori provides made me soon realize that although we have one term for what we call "community supports," this phenomenon is far from being one thing. Instead, this study reveals "support" as a very complicated phenomenon consisting of many different, but intertwined components. Although the various components that make up community supports are intertwined and difficult to keep separate in practice, it is helpful, for the sake of analysis, to keep them apart. Thus, in the following I will analyze the different components of support I have identified.
Everyday Practical Assistance The most visible support Lori provides is the assistance she provides with everyday practical things. There are at least three different types of such practical assistance:
Physical work. The most obvious support Lori performs is pushing Mel around in his wheelchair, pulling the chair up stairs, transferring Mel in and out of the chair, and so on. This part of the support is demanding physical labor and requires a fair amount of physical strength.
Technical work. These are things like driving the big van around and operating the wheelchair lift in the van. This also includes "technical" work and skills around Mel's health, such as medication and complicated Medicaid rules and regulations which govern much of Melvin's life in the community.
Personal work. Mel needs help with very personal things like eating, dressing, and going to the bathroom. Some of this work requires very close personal physical contact. Other components of this "personal work" consist of taking care of Mel's every day money spending and overall finances. An example of this is Lori's assistance with taking care of Melvin's will. Melvin also needs help with other personal things like calling his friends and family, buying clothes, selecting paint for his room, and so on.
In short, the support Lori provides in terms of everyday practical assistance consists of hard physical labor and taking care of some of Mel's most demanding, intimate, personal needs, like eating and going to the bathroom. If Lori wasn't there to take care of this, someone else would have to assist him with these things. In the context of community participation this work is crucial for Melvin. Much of this work is either demanding physical labor or tasks that people would ordinarily find difficult or embarrassing like helping Melvin go to the bathroom. When Melvin participates in social events in the community, Lori's support means that she takes these "difficulties" out of the way and people can enjoy Mel's company without having to worry about the "problems" related to his disabilities.
Translating
Another important function Lori fulfills as Melvin's support person is to "translate" for him. The translation Lori does goes two ways; she translates from Mel to other people, and to Mel what other people say. Melvin is very hard to understand and when people do not understand what he says Lori will repeat it. In addition, because it is such an effort for Melvin to speak, Lori often adds explanations or information about what he is talking about. The second type of translating is necessary because of Melvin's hearing loss. As he has grown older he has lost hearing and sometimes has a hard time hearing what people say. When Lori is with him she is very observant and watches whether Melvin can hear what people say. If he doesn't hear people, she repeats to Melvin what the person just said.
The difficulties Mel has in communicating become very clear when Lori is not with him. People become very uncomfortable when they don't understand what he is trying to say and find it very embarrassing to have to ask him to repeat it again and again. Sometimes people pretend they understand him in order to get out of these uncomfortable situations. People sometimes also misunderstand what Melvin says so their answers to him do not make sense because they misunderstood him. It is hard for Melvin to keep a conversation going under these circumstances.
Another difficulty that arises in situations where Lori is not with Melvin results from his hearing loss. For example, a person says something to Melvin and--because he can not hear them--he does not respond to them. This creates a very uncomfortable atmosphere and the person who just addressed Melvin usually does not know how to handle the situation. Melvin looks very disabled, people therefore sometimes assume that he is too intellectually limited to understand the question and therefore chooses to ignore them. People may also think that their question was inappropriate or offensive and that is the reason why he does not answer. Thus, when Lori is around she takes away a great deal of the discomfort and insecurities around Melvin and makes the communication between him and other people smooth and easy.
Lori also translates on a different level than just repeating words between Mel and other people. What I'm referring to is when Lori conveys to other people what Mel wants to do, what he can and can not do, what is safe for him to do because of his health, and so on. If Lori is not around to convey such things people are often insecure about what Melvin wants or what is safe for him. An example of this occurred during the visit to Melvin's sister. While Lori was in the bathroom John (who is married to one of Melvin's nieces) brought out chocolate and encouraged people to have some. John asked the old lady (Melvin's sister) if he should give Melvin chocolate. The old lady said she didn't know if it was safe. She looked at me and asked me if Mel could have chocolate. I said I didn't know, she should ask Mel, "he knows what he can eat." When she asked him, Melvin said: "Yes." The old lady did not seem convinced and said something like: "You better not choke on it in my house," and put a piece of chocolate in Melvin's mouth. When Lori returned from the bathroom the old lady asked her if Melvin could have chocolate. Lori said: "Oh yes, he loves chocolate, he eats it all the time." It was not until Lori convinced her that this was safe the old lady stopped being nervous and insecure about giving Melvin chocolate.
This form of translating what Melvin likes and what is safe for him also takes away a lot of the uncertainties and insecurities around him. Even if people understand him when he explains what he can do people seem to have a tendency not to trust what he says. Maybe they suspect that he is "too disabled" to know what is safe for him and what is not.
Facilitating
An important component of Lori's support is facilitating Melvin's participation in conversations and social situations. If someone does not provide this facilitation it is most often impossible for Melvin to participate in group conversations. Melvin's inability to participate in group conversations is mostly due to how slow his speech is, how long it takes him to prepare himself to say something, and how long it takes him to say one sentence. Thus, it is impossible for him to "jump in" or keep up with the flow of the conversation in a group. Lori is very skilled at facilitating Mel's participation and as a team they manage to keep him a part of the conversation although Melvin does not say very much. To a large extent Lori participates in the conversation on Melvin's behalf by referring to him constantly. She tells stories about what he has done, what he said, how he acted in certain situations, what his opinion is about certain things, and so on. She also draws Melvin into the conversation by opening up a "space" for him to add a sentence. This facilitating on Lori's behalf "normalizes" Melvin's participation in social situations. The amazing thing is how skilled they have become at working as a team at this. While Lori is talking on his behalf, Melvin participates by nodding, smiling, making faces appropriate to the topic, and keeping eye contact with the people in the group. Melvin and Lori also keep an eye contact with each other while they are telling the story and they seem to decide through this eye contact when he should "jump in" and do his part of the talking.
Being Mel's support person means that Lori must play an active role in the social context they are in at any given time. At the same time Lori is really not there in her own capacities. She is there to support Mel's participation. This part of the support role is quite a challenge. Lori's character and the way she interacts with people is crucial for Mel's possibilities to become a part of what is going on. At the same time Lori cannot dominate the situation with her personal presence and opinions, because if she does Melvin falls in the shadow and "disappears." This part of Lori's support role requires a very delicate balance act on her part.
Supporting and Facilitating Self-Determination
Lori's role in facilitating and supporting Melvin's rights to self-determination is the last component of her support role. Melvin lived in state institutions for over 60 years and is not used to making demands on his own behalf or having many choices. People who live in institutions are not expected to make demands; they are expected to obey the rules. Melvin told me that first when he entered the institution he was determined to "have my way and I got into a lot of trouble." He added that he had changed and decided to "cooperate" with the staff. In retrospect Melvin says this "strategy" (although he didn't think of it as a strategy at the time) helped him survive the institution. "Cooperation" in the context of institutional life means that clients obey the rules and the staff. Thus, when Melvin moved into the community he was not at all used to making demands on his own behalf or choices or decisions about things. Melvin also told me that the staff in the apartment didn't do much to encourage him to exercise decision making or choices. It was not until Lori started working with him that he received encouragement to make demands, choices, and decisions.
At first Melvin found it very difficult to make demands on his own behalf. Part of these difficulties have to do with Melvin's character. As described earlier, Melvin is a man of peace. He wants people to be at peace with each other and finds it very hard to deal with conflict. Therefore, he often kept quiet about his wishes because making demands could create conflict. Melvin is also a very kind and gentle person and avoids doing anything that might hurt others. This has also led him to keep quiet about his wishes. Making demands often means that he has to ask people to change the way they do things. He often assumes people will take his wishes as a criticism and be hurt. He therefore often chooses to keep quiet. A good example of this is when a new staff person at the apartment kept calling him "sweet thing" and "honey-pie." Melvin did not like being addressed in this way but he knew the woman did not have bad intentions, she was only trying to be nice to him. He was afraid that she might be hurt if he asked her to stop this. He finally got up his courage and discussed this with her, carefully explaining to her that he did not mean to hurt her but he would appreciate if she would not call him "sweetie pie" all the time. The discussion went quite well and the staff person does not address Melvin in this way any more. This was the first time Melvin got up his courage to address things like this and he feels very good about having done this. He feels especially good about having been able to do this without hurting the staff person.
Lori has played a critical role in facilitating and supporting Melvin in making demands on his behalf. This is something they discuss at great length and Lori's role has been to explain to him that he has the right to make choices about what he does, make demands on his own behalf, and exercise control over his own life. They discuss in great detail what the consequences of his demands might be, how people might react, and how Melvin could handle different situations that might come up in this context.
Much of Melvin's life has been characterized by disappointments and shattered dreams. Therefore, he is often afraid to make decisions to do the things he would most like to do, like travelling to visit some of his nephews and nieces who live in far away states. He does not want to face the disappointments if things do not work out. Lori's role has been to encourage him to make decisions like this, help him figure out how he can make things happen, and assist him in making sure that things will work out. Before Lori started working with Melvin he did not exercise much self-determination.
Negotiating Who Does What
It has been interesting to observe how Mel and Lori negotiate and make decisions around the support Lori provides. These negotiations usually take place in at least two steps. The first step is before they go places; when they decide where to go and discuss what Mel wants to get out of the visit (or whatever they are doing), who he wants to see, what he wants to say, and so on. The second step is when they are in the situation and need to decide when Mel is going to talk and when Lori is going to do the talking. They make these decisions through eye contact or in other very subtle ways that are not very visible to other people.
Invisible Work
The different components of Lori's support role are all equally important for Melvin's participation in community life. Without this support he would not be able to participate in social events, conversations, or other community activities. In short, without Lori's support Melvin could not be out among people and he would only be physically present if she didn't support and facilitate his participation. In addition, he would most likely not make decisions about where to go and what to do if she didn't support his right to self-determination.
Among the insights provided by an indepth analysis of Lori's support role is realizing how important it is that Lori takes care of, and takes away, the "difficulties" and "problems" around Melvin. She also takes away the uncertainties and insecurities around him. Much of Lori's support work is "invisible work" that only becomes visible when she is not there to do it and the problems and insecurities arise.
Interweaving Formal and Informal Supports
Formal and informal supports are most commonly seen as complementary to one another. The increasing attention paid to informal supports has emphasized that the formal support services should strive to start with and strengthen informal networks of support in the community. In this view the "interweaving" is between the formal services system and community members such as family, friends, and neighbors. An analysis of the support Lori provides presents a slightly different picture. Although Lori facilitates connections and contacts between Melvin and other community members this facilitation usually does not focus on facilitating provision of support from other people. Instead, it facilitates participation where Lori provides the support needed to enable Melvin to be involved in activities and events. This does not mean that the "interweaving" of informal and formal support is absent. The way Lori interweaves formal and informal support is by providing both types of support. As a paid human service worker she provides Melvin with support the six hours a day she works with him. But outside of her work and as his friend, Lori provides Melvin with informal support such as going to dinner with him and their mutual friends, inviting him to family events with her own family, making phone calls to people who can not be reached during the day, calling the apartment on weekends to remind the staff that Melvin wanted to go to a baseball game, going fishing with him during her maternity leave, and so on. Thus, informal and formal support is something that Lori "interweaves" within her own life and relationship with Melvin.
The Importance of the Relationship
An analysis of the successes Melvin has experienced in becoming a part of community life in the past few years reveals that the success is basically dependent upon one person. It is the support Lori has provided him with that has made the difference in his life. This leads us to an important question: Why has Lori been so successful in facilitating and supporting Melvin's participation in the community? I would argue that what makes the crucial difference is the relationship between Melvin and Lori. The mutuality and closeness of their relationship is what makes this a success. This closeness has made Lori very sensitive to Melvin's needs and wishes. It has also created the "harmony" between them and the ease with which Lori performs her role. Other people can perform the "work" needed for Melvin to participate in social events in the community, but his experiences are sometimes quite unpleasant when the support is provided by other people than Lori. For example, Melvin wanted to see a baseball game in a town five hours drive from Newtown and one of the staff people at the apartment offered to take him there. The trip turned out to be a disaster. They left on a Friday afternoon, the staff person got lost on the way and they didn't arrive till very late in the evening. They tried to check into a hotel but because the staff person did not have a driver's license or any other I.D., they could not get a hotel room. They ended up driving back to Newtown this same night.
The difficulties when other people than Lori provide Melvin with support also became apparent while Lori was on a maternity leave. The agency hired a woman, Marilyn, to take Lori's place. I accompanied Melvin and Marilyn one day to a very important lunch meeting with a professional from the agency which runs Melvin's apartment program and one of Melvin's closest friends. Melvin wants to move out of the apartment and have his own home in the community. This meeting was set up to discuss the possibilities of making this come true. The three of us, Melvin, Marilyn, and I arrived early at the restaurant. Marilyn asked Melvin what he wanted to eat and went to get the food for him. When she returned she told Melvin the restaurant didn't have the root beer he asked for. Marilyn took a long time to figure out what Melvin wanted to have instead. He told her he just wanted anything they had, he didn't care. Marilyn insisted that he would "make a choice" and told him he should decide what he wanted to drink and not just have "anything they had." It was clear that Melvin did not care what he would drink with his lunch that day. He had other things on his mind. This was quite an eventful day. First, Lori had her baby early the same morning and Mel had not heard any details about how she was doing, just a message that the baby was born and they were both "doing well." Second, the meeting that was just about to start was a big event for Melvin, and it was very important that it went well. Thus, whether he had Pepsi or Coke with his lunch was not an important issue for him at the moment. But Marilyn insisted that he concentrate on making a choice about what he wanted to drink.
This incident is a good example of how the issue of "choice" can become trivialized and how staff do not adapt to the situation and instead make people make choices about trivial things. In this case it was clearly much more important for Melvin to be able to concentrate on the meeting and being able to choose where he would live in the future, than to choose between Coke and Pepsi.
This meeting also revealed other important insights about the importance of how the role of a support person is conducted. Marilyn sat next to Melvin and did her best to make sure he heard everything that was going on. She repeated things that were being said in a loud voice for Melvin and would frequently ask: "Did you hear that sweetie?" Then she would repeat the sentence that had just been said, often without waiting to see if it was necessary or not. Marilyn was obviously trying to do her best but she overdid things. She frequently repeated things Mel had heard and her way of yelling "sweetie" and "honey" at him all the time made the situation uncomfortable. This meeting made quite clear the difference between Lori's and other people's way of supporting and facilitating Melvin's participation in social circumstances. Lori is very relaxed and secure. She knows how much assistance Melvin needs and when he needs assistance with hearing, talking, making choices, and so on. When Marilyn is around things are stressful and insecure. Marilyn overdoes things. She does more than is needed and speaks louder than is necessary. When Lori is present things "flow" very smoothly. With Marilyn things become difficult and "stiff." Marilyn makes a big deal out of translating to and from Melvin and the conversation becomes awkward and unnatural. It is clear that Marilyn is translating when she repeats things for Melvin. When Lori does the same she does it in a more natural way so it becomes a part of the conversation, instead of being a clear repetition of what someone just said.
Thus, a comparison between Lori's support and other people's support suggests that the most crucial components of the support role have to do with the personalities of the people involved and the relationship between the people providing and receiving the support.