The visceral remains: revealing the human desire for performance through personal narratives of Alzheimer’s Disease^*

* An earlier draft of this essay received the Top Contributed Paper Award for the Performance Studies Division at the 2018 convention of the National Communication Association.

ABSTRACT

Through analyzing the narratives of two elders experiencing Alzheimer’s Disease (AD) as personal performances of identity, this essay explores repetition in interpersonal interactions beyond a familiar diagnostic sign of the progression of memory loss. The author argues that, as AD hinders the body’s ability to diversify language and adhere to cultural expectations for personal performances, the visceral desire that compels humans to perform for/with one another surfaces in concentrated vivid form: bodies responding to the world desire to reiterate meanings that matter to others, knowing these meanings are only real to the extent they are (re)performed in daily life.

KEYWORDS:

• Performance of daily life
• narrative analysis
• personal narrative
• Alzheimer’s Disease
• cognitive disability
• performance of identity
• aging

Acknowledgements

The author would like to thank Craig Gingrich-Philbrook, the anonymous reviewers, Jonny Gray, Jay Allison and Brian Grewe for their insights on earlier drafts of this essay.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

* An earlier draft of this essay received the Top Contributed Paper Award for the Performance Studies Division at the 2018 convention of the National Communication Association.

1 All names have been changed to preserve confidentiality.

2 I initially restricted my research call to elders deemed “independent” by both the state and their assisted living facilities to ensure that participants were not categorized as members of a protected class and could autonomously consent to participate. After Shirley requested that William be part of the study, I approached the director of my university’s IRB to revise the participant demographic restrictions. David requested Millie be able to participate so I could release the recording and transcription to him and have their stories included in the findings. With written requests from their spouses/guardians, I included William and Millie’s narratives.

3 This study is part of a project that included 27 interviews with elders who self-identified as experiencing memory loss. I conducted open-ended interviews at three affluent retirement communities stemming from the question: “What are the stories you don’t want to forget?” Administrators at lower-income facilities did not allow researchers access unless they were medical professionals. In contrast, administrators at higher income facilities were eager for their residents, who they deemed “important people” to have an opportunity to create a record of their stories. All participants included in this essay self-identified as White and were engaged in heteronormative, cis-gendered relationships at the time of the interviews.

4 Increasingly since the Victorian era in Western culture, women, particularly those of privileged status have been expected to facilitate dominant expectations for controlled, restrained, “proper” etiquette (see DeBerg).