Nicole W

The United Cerebal Palsy (UCP) website states that the organization’s goal is to “advance the independence, productivity and full citizenship of people with disabilities through an affiliate network”. At the UCP center in Carlisle, PA, there is evidence of this mission statement at work. During the time that I volunteered at UCP I was able to interact with a majority of the clients. As a volunteer I was not given particular details about each client’s disability, but was able to communicate, both verbally and non-verbally, with individuals who had a range of disabilities. Some clients were only affected by their disabilities in one or two ways (i.e. a speech impediment), whereas others may have been unable to speak (non-verbal communictaors), needed wheelchair assistance, and/or needed to be restrained as a result of violent actions.

Despite the range of disabilities that the clients at UCP have, this particular agency provided a safe, encouraging and beneficial space for the clients to interact in. The agency is designed to provide “all persons in the community, regardless of ability or disability [to] have an equitable opportunity to fully participate in all facets of community life, in accord with their personal needs and interests”. Reading books, enjoying music, creating art projects, having discussions, exercising and eating meals are some of the everyday activities included in UCP’s agenda that allow clients to be part of “community life”. The volunteers and staff members at the agency also work hard to teach and help clients be independent and their expectations and assistance coincide with each client’s particualr disability(ies).

A majority of the clients who use UCP are not partaking in “normative” society on a daily basis. Some clients come to the agency every day, others only come once or twice a week and there were some clients who I saw for the first time during my last visit with the agency. Some of these clients live with a parent or guardian and I suspect that these individuals have more experiences with “normative” society by having daily interactions with individuals who are not disabled and who do not choose to utilize the agency. On the other hand, some clients come to the agency from homes designed to provide care and assistance to disabled individuals. These clients are not interacting with “normative” society on a daily basis and, in fact, their only interaction with “norms” are with the staff members and volunteers at UCP and in their residences. Since UCP and homes designed for people with disabilities require a staff, it seems as though a dominant/subordinate realtionship exists between those individuals with disabilities and the able-bodied staff members and this becomes problematic for disabled individuals who want to/should/need to partake in “normative” society.

There were a handful of clients at UCP that I was able to form some type of relationship with. It was easiest to bond with and spend a substantial amount of time with those clients that were there during all of my visits and this was the case with both Robyn and Junior. Although I am not qualified to judge the clients’
“progress” or “development” in the weeks that I spent volunteering at UCP, I felt like I made some sort of impression or impact on both of these clients. Junior remembered my name and the college’s name each time I arrived at UCP and we would often write both of these down each time I was at UCP. Junior was also very responsive to requests if I asked him to wait a minute or move his chair if he was sitting too close and I’m not sure if these behaviors were dependant upon the level of his disability or if it meant that he had some sense of respect for me. My interaction with Robyn during my time at UCP was another relationship that I think is worth mentioning. When I first arrived at UCP I tried to talk to Robyn and to do a puzzle with her and she would only stare at me, but would not respond to my words or actions. I later found out that Robyn is a non-verbal commuicator, meaning that she cannot speak. During my next visit, Robyn approached me and took my hand to pull me out of my seat. She brought me over to the kitchenette area and by carefully trying to interpret her request I was able to figure out that she wanted me to get her a cup of tea. Even though this was such a small task, it was a rewarding experience to be able communicate with Robyn in a way that allowed us to interact on the same level, rather than me feeling lost and confused while I was trying to talk to her.

One theme that we have addressed, directly and indirectly, in our class readings and discussion has been the way that disability studies challenges the notion of the American dream. It becomes apparent that American dream ideals such as social and financial mobility, independence, determination and autonomy are taken for granted in “normative” societies. This concept became especially clear to me during my time at UCP where I interacted with individuals who really don’t have much of a say regarding their personal liberties due to their respective disabilities. The fact that much of our society is based upon these values and that any individual with a disability “challenges” those values suggests that maybe we need to both rethink and reshape those ideals so that they work to include rather than exclude individuals in the same society, regardless of difference.

I went to UCP today at 8:30. I spoke briefly with Stephanie, the program coordinator, and found out that she is moving out of Carlisle and relocating to a different site somewhere else in Pennsylvania. There were a few clients in attendance today that I had not met so I introduced myself and spent some time with Mark. Mark is in a wheelchair and has a heavy speech impediment and Mark and I decorated a calendar for April with pink bunnies and purple and blue eggs. Mark laughed a lot and initially could not figure out how to stick the stickers to the calnedar on his own because his hands were very stiff and not mobile, but at the end of the activity he was able to stick them on his own. After talking with Mark, I sat with Darlene and did a few puzzles with her which she finished very quickly. Today we also went for a walk with about 15 clients. We walked down North Street and did a large lap around the block in Carlisle. The walk took about 25 minutes and I left for class once we arrived back at UCP.
When we walked with the clients it was very difficult to keep everyone together and to walk at a steady pace like we might be used to doing on our own. There was only one staff member in attendance and two volunteers and many of the clients would just stop walking or wander off so it was hard to give individual attention to eahc one since the ratio of staff to client was about 5:1. When we first arrived at UCP at the beginning of the semester we were told to be aware of the way we treated and spoke to the clients so that we did not treat them like children. When we were walking today I held the hands of two clients during the entire walk and it felt a bit like a field trip with young children. I had to remind myself that even though some of the clients needed assistance and were not aware of oncoming traffic, that they could not be spoken to like childrne, but instead should spoken to with a firm voice and reminded of the danger of traffic. I had a good time interacting with Mark today, but he helped me to remember that the clients are not asexual beings. It was clear to me when Mark kept holding my hand and following me when I tried to leave that he may have been attracted to me, but it was difficult to know because he was so hard to understand. i didn’t ignore Mark, but instead I tried to divert his attention to something else like a book or a project.
When we read “Good Country People” we met a character named Manly Pointer who took advantage of Joy because she had an artifical leg. Joy was portrayed as an intelligent, independent character who did not have much sexual experience and Manly Pointer acted as a sexual predator to her because she had a physical disability. When Mark was holding my hand and telling me that I was pretty during my visit today I wondered if an individual, such as Mark, has the opportunity to experience intimacy. Although Joy was a character with a disability, she was not bound to a wheelchair and she also was fairly mobile. Mark cannot get out of his wheelchair and has difficulty speaking and it made me realize how easy it would be for someone with a number of physcial disabilities to be taken advtantage of.

I arrived at UCP today at 8:30am and was greeted with a busier and more hectic group than last week. Unlike last week, there were not any weather conditions that prevented the clients from getting transportation so there was a “full crew”, so to speak. One of the staff members also told me that they were short-handed and so they were grateful to have our help. The first thing I tried to do today was introduce myself to all of the clients who I was unfamiliar with. One event that caused a bit of a stir this morning was when one client’s cookies were taken by another client. Robyn is a “non-verbal” client and she has a routine of coming in at 8:30 and sitting at a back table and eating her cookies. During this visit Robyn was much more active and physcially communicative than she appeared to be last time. Robyn conveyed a message to one of the staff members that her cookies were gone and they had to get her another pack. Jim was spotted chewing something and wiping his mouth and so we suspected that he had taken the cookies. Everyone was very vocal about this and some of the clients were excited and expressed that they knew Jim had done something wrong. I then sat at a table with Junior, a client who I met last week, and Frances, a newcomer to my UCP experience. Junior likes to know and say people’s names and when I sat with him at the table, he was writing out his own name, so I asked if he could write mine and he did. Frances was folding some bibs into a neat pile and so I spoke with her briefly. Robyn, whose cookies disappeared this morning, was especially interested in me today considering that last week I couldn’t interact with her at all during my two hour visit. Robyn approached me when I was sitting with Junior and Frances and tapped me on the shoulder and took my hand to lead me out of my chair. She led me over to the kitchen area where I eventually figured out that she wanted to make a cup of tea so I helped her out as best I could, only to find out that within a few minutes she had found one of the other staff members to make a fresh cup for herbecause she didn’t like the way I made the tea. Mary was the next client who I spent some time with and I learned today that Mary enjoys saying nursery rhymes and is very good at reciting them. When I moved to a different table, Robyn approached me again and stood next to my chair for about 15 minutes during which time she rubbed my shoulder. I was working on a puzzle and offered her a few pieces to include her in an activity but she seemed only interested in touching my shoulder. Robyn then proceeded to push my shoulder, instead of rub it, initially a gentle push and then increasingly pushing with more force. Robyn alternated between the pushing and rubbing and when she used too much force I took her hand away and asked her to please stop. Rpobyn didn’t really listen to my requests, but she did not make me uncomfortable enough to remove myself from the situation. After Robyn moved on to another table I offered to read a story to Darlene, a client who was vocal and who seemed to be alternating between laughing and crying. I led Darlene over to a couch and sat with her to read and she did not pay much attention to the story, nor would she look at the pictures in the book, but she stayed seated next to me.

I would call today’s visit “successful”, meaning that I had positive experiences and interactions with most of the clients. Junior seems to get attached to me (and others), telling us how much he lives us, when we are there to volunteer, but I felt confident enough this visit to try and divert his attention away from that one train of thought and was able to get him to do other things. One interesting thing that happened a few times today that I notied about Junior was that he was especially aware of other people’s safety. When I was sitting with Robyn, all she was doing was touching me and Junior kept a close eye on her and kept saying “Don’t touch Nikki”. Although I did not feel threatened by Robyn or any of the other clients who were physical, it was actually comforting to know that someone had a close eye on those situations in the event that something more serious happened. Another experience that is worth reflecting on from today was my interaction with Robyn. Since Robynwould not respond to me at all last week, I felt complimented, or special (i’m not really sure of which word to use) that she spent so much time with me today. It was a difficult challenge because she cannot speak and at times I just wanted to say “What DO YOU WANT”?…but I didn’t. I felt accomplished and satified when I was able to communicate with her (without speaking) and to learn the ways that she was able to understand my actions.

Today I found myself challenged a number of times by language barriers and so I think it is necessary to then think of Lionel’s character in Motherless Brooklyn. Lionel’s reactions with all of the other characters revolve mainly around language patterns, his struggle with language and the process by which he learns “the language”. During today’s visit with both Robyn and Frances (one client is a non-verbal communicator and the other has a very sever speech impediment) I found myself in the position of having to “learn the language” if I wanted to communciate with them. I failed a number of times at learning what Robyn was trying to tell me before I was able to “successfully” respond. In order to understand what Frances was saying to me, it was necessary to learn a different way of listening to the way she spoke each word in order to better understand her.

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