One of the high points of my music therapy work was my work with children with multiple severe disabilities. I thoroughly enjoyed my work with these children, and my curiosity about this pleasure led to a research study that I did several years ago on my pleasure in working with children with severe disabilities, “Experiencing Pleasure in Working with Severely Disabled Children.” [The article can be accessed from this site. Open pdf file 8.1 MB. The article is reprinted with permission of the American Music Therapy Association] I hope that those who are not familiar with the article will read it, but will also share some of what I discovered here.
I said in the article, “My interest in this topic arises from the joy that I experienced at times during my work with children with multiple disabilities. As I reflected on this experience, its intensity, and how it felt, I often wondered exactly what the experience meant to me. Why did I have this feeling of joy when doing this work?” (pp. 57-58) This joy was exceptional, and I remember my work with these children to this day as a very special experience. After the analysis that I did as part of my research, I found my pleasure to revolve around four categories: (a) intentionality, when the children allowed me to assist them, continued on their own after I had assisted them, or initiated something upon my request or spontaneously; (b) emotionality, including smiling and physical closeness; (c) communication, including humming or making specific sounds or words; and (d) mutuality, when the child would do something with another child or with me as the therapist, upon my request, with physical cues, or spontaneously. In the article, I give examples of many of these experiences in which I found pleasure.
Recently, as I have shared information about this study with people, they have suggested that it would be good if the parents of the children with whom I worked with and with whom I experienced this pleasure could be made aware of how much I enjoyed it.[1] I had never thought of this, but the idea provided the impetus for the topic of this column.
The parents of these children spend lots of time dealing with their children’s problems and getting the best education and care for them. I assume that they encounter some people who do not understand their children and their needs. I suppose that they may occasionally wonder if some of the people with whom they have contact can understand how wonderful their child can be. One of the reasons that I decided to write about this in this column is so that this article—and my thoughts on this—can be more accessible to parents. (Related to this, I was pleased to see this article referenced on a website that I came across, for the Cornerstone House of Santa Barbara [http://www.cornerstonehouse.org/recreation.html], from where I assume some parents and others may have heard of the study and my pleasure and perhaps even looked for the article after seeing it referenced.)
I feel incredibly fortunate to be in a profession in which I am able to interact with and relate to people through the pleasant and powerful medium of music. I believe that much of the joy that I experienced in working with these children came because we were connecting and communicating through music. I assume that many other music therapists experience this as I do, although it is not something that is spoken of often. Some of this may be professional boundaries that are appropriately kept and which I am not suggesting should be broken down.
I said in my 1999 article, “In an encouraging development, several music therapists (most of whom work with the terminally ill) have recently examined personal motivations for and influences on their choices of clients with whom to work.” As I was working on this column, a colleague[2] suggested an article by a music therapist working with people who are terminally ill, and I related to Nigel Hartley’s feelings when he said, “My feeling…is that we should attempt to bring into the open what happens to us, as human beings, when we are acting as music therapists in improvised musical experiences. If done appropriately, and with integrity and honesty, this can bring us to a deepening understanding of the work we do” (p. 136). Nigel goes on to speak of some of the powerful experiences that he has had as a music therapist working with the terminally ill.
Although the experiences that I found so pleasurable were not with people with terminal illnesses, but with children with severe and multiple disabilities, I also found them to be powerful and meaningful. I am pleased to be able to share these experiences in this format and hope that it may encourage other music therapists to be aware of the impact that those with whom we work can have on us. I also hope that some parents and others who love and are involved personally with the children from whom I have received so much pleasure will find my experiences to be meaningful.
[1] Thank you to participants in the Aalborg University PhD course in May 2006 for this suggestion.
[2] Thank you to Dr. Joy Berger for making me aware of the Hartley article and to Joy, Shannon Bowles, and Lorinda Jones for feedback on an earlier version of this column.
Hartley, N. A. (2001). On a personal note: A music therapist’s reflections on working with those who are living with a terminal illness. Journal of Palliative Care, 17, 135-141.
Wheeler, B. L. (1999). Experiencing pleasure in working with severely disabled children. Journal of Music Therapy, 36, 56-80.
Wheeler, Barbara (2006). Experiencing and Sharing the Joy of Our Work. Voices Resources. Retrieved January 14, 2015, from http://testvoices.uib.no/community/?q=colwheeler250906