"God Is a Talking Horse": Dementia and the Performance of Self

Scholars and activists within the fields of disability and age studies have fought hard to have disabled individuals of all ages recognized as people with disabilities, rather than a class of the disabled or the old. These two broad categories are peopled with individuals with life experiences and opinions, not just needs demanding attention. To better understand the experience of disability, scholars and activists call for the voices of the disabled, for their stories to be told and heard. But such a call also presents us with several challenges. How can the voices of the disabled be heard--particularly the voices of people with cognitive impairments or severe physical impairments? In what forms can and do their voices have meaning? Might certain forms of narrative and modes of performance actually support ideals of independence and selfhood that fuel fears of disability in the first place? What can the stories of the disabled tell us about the very meaning of the "self"? ¹

I want to address these questions by following Time Slips, a creative storytelling project with people with Alzheimer's disease and related dementia (ADRD) ² that began in 1998 in both Milwaukee, Wisconsin, and New York City. As director of the project, I organized 18 weeks of storytelling workshops in Milwaukee and 9 weeks in New York City. In the second phase of the project, we translated a handful of the nearly 100 stories into a professional play production, a Website, and an art installation in order to deepen public awareness of the creative potential and humanity of people with dementia.

Interviews with staff and family caregivers, student facilitators, ³ and the storytellers themselves reveal that the storytelling was a surprisingly moving process. Certainly none of the students expected to be invigorated by an hour of storytelling each week with people with Alzheimer's disease. How and why it worked, what form the stories took, and what the stories can tell us about the performance of selfhood are the questions that fuel the first part of this article. In the second, I look to the production of the Time Slips play in Milwaukee in May 2000, and how responses in post-show discussions revealed common fears and understandings of the self.

Between You and Me

It is the social process itself that is responsible for the appearance of the self; it is not there as a self apart from this type of experience. (Mead 1934:142)

[The] self itself does not derive from its possessor, but from the whole scene of his action. (Goffman 1959:252)

At the root of the Time Slips project was an effort to encourage creative expression among people with Alzheimer's in a form that could capture the complexity of their worlds and our relationship to them. The people with whom we worked were either living at home with family or in long-term care. All had some form of 24-hour care and nearly all had symptoms consistent with middle-stage Alzheimer's disease. ⁴ People with ADRD lose the ability to comprehend the chronological time systems that orient so much of global culture that it is nearly impossible for them to function without someone who can translate that world for them. Severe short-term memory loss can bring disorientation and paranoia: Who is this person coming into my room? What is this room? Gradually, the forgetting of details grows into the loss of concepts. One does not just forget where one put the keys. One cannot comprehend the meaning of a key.

People with ADRD are an extreme example of a "self" that is relational, that is formed through interaction with others. On the other end of the spectrum, however, is not an "independent" self, but simply a less extreme example. For example, I am able to perform my daily activities largely by myself--cooking, cleaning, walking, and generally tending...