“But this is a world”: Alzheimer’s writing and punk pedagogy



I'm going to take two people

To get the asparagus in the west


She says sort of north to be dead

Because she was very hard


Incidentally that man is not my mother

And now they’re killing


But this is a world

I don’t know what’s going to happen         


The preceding poem was adapted with permission from conversations with a 77-year-old man with Alzheimer’s, the sixth leading cause of death in the United States according to the Alzheimer’s Association. For approximately one year as of this writing, I have been working with this man (we will call him William in honor of William Gibson, new media author of the memory-based poem Agrippa) by request on a weekly basis, dictating his observations about his time on the USS Knapp (a destroyer vessel he served on during the Korean War) and other life events through his own photographs and texts.

William was diagnosed with Alzheimer’s in 2007 and appears to be in what Heidi Ehrenberger Hamilton would describe as Stage 2 (Active, Confused, Unaware) of the condition; he is still able to utilize normal conversational devices but experiences difficulty with speech and is unable to write on his own. This project, therefore, has been an attempt at a way for William to cope with the fragmented nature of his existence.

As a compositionist and creative writer, I seek through my work with William to analyze the textual evidence of aging in combination with aphasic text (aphasic as defined by impairment of language ability due to damage to the left hemisphere of the brain) along with fragmentation and the (in)accessibility of memory. I find that the connections between the fragmentation induced by memory loss and the fragmentation present in postmodern life are striking.

Here, I wish to focus on the relationship between nontraditional communication as demonstrated by memory-challenged individuals and postpedagogy as referenced by Thomas Rickert in Acts of Enjoyment: Rhetoric, Zizek, and the Return of the Subject where “. . . something is always out of place, sticking out, slipping, in error. A postpedagogy acknowledges this as a starting point and affirms it rather than ‘fixing’ it.

The medical treatments that presently exist to treat Alzheimer’s only serve to delay the onset of its most debilitating aspects. Even so, there are therapeutic methods of language immersion and recall that have positive, wide-ranging implications for the experiences of older persons and the teaching of writing.

Admittedly, it seems radical to propose that communication demonstrated by those with memory loss can be addressed in the classroom, but not when we can focus on what language can do rather than what it means, to meet our students where they are without the narrow parameters often imposed by traditional composition studies.

While Rickert does not address Alzheimer’s directly in Acts of Enjoyment, he introduces similar radical ideas that lead to palpable questions of invention, agency, and the Act. Rickert describes the Act as writing that comes from students and is for them; it moves from the status quo into “affirmative forms of contemporary invention” that produce change (31-32).

In illustrating his idea of a postpedagogy of the Act, Rickert writes: “Such a pedagogy would be many things. It would be what [Geoffrey] Sirc labels a punk pedagogy . . . It would be a pedagogy of risk. It would refuse the reproduction of the everyday, or, better, seek to reenchant the everyday via the new, the unthought, the unaccommodatable” (195).

This sense of the new and unthought is captured beautifully -- even if unintentionally -- in the communication of those with memory loss. Through their breakage of language they create something unprecedentedly poetic and perfectly reflective of the Act; their form of communication is its own thing, stripped of expectation and judgment.

A scholar and performance artist who has put this reflection into practice is Anne Davis Basting, whose TimeSlips project is a creative storytelling method originally designed to be used with patients with dementia. The project “aims to inspire people with dementia to hone and share the gifts of their imaginations; inspire others to see beyond the loss and to recognize the strengths of people with dementia; and improve the quality of life of people with dementia and those who care for them.” It is based on shifting the emphasis from memory or factual reminiscence to opening and validating the imagination.

Consider the following, in which William expressed his frustration when I asked him about some lab work he had had recently:

“all my problems with all mostly, and not only that, the one I have been doing this for I don’t even know how long, so I, here’s what I know, they’ve been there for years, oh God, I couldn’t even tell you, so many years, they do it, and I work. I do very stuff, it’s very, and they have to go and make sure, make things very, and they give me this and that, and then if it isn’t right it isn’t good, and we do it again, the blood, the blood”

The framing of language is always incomplete, an impossible thing. As noted in the introduction, I have been asking William to review photographs and recording what he can about each event or object. Upon viewing a photograph of the abandoned Fisher Body Plant 21 taken by noted Detroit photographer Scott Hocking, he said:

“that’s from the quarter downtown of the and they have this thing here there is was not it’s very bad and I’ve it was all people are and that was a variable I have to see it it’s really this it’s all stuff but I don’t believe it was part of it all this stuff I don’t know but it’s very very now it was now right downtown well not down it would be it was a huge it I want to see these things”

It is important to note that in all of the included passages, William’s sense of the “I” is present. There is a sense of the immediate and tactile, as in “I want to see these things.” In "The Construction and Deconstruction of Self in Alzheimer's Disease," Rom Harre and Steven Sabat assert that so long as "the [dementia] sufferer can be shown to employ the first person coherently in his or her discourse . . . the sufferer has displayed an intact self." Still, mere representation in photographs or texts is not sufficient for those with memory loss as they attempt to negotiate who they are (and who they are becoming).

Applying Rickert yet again, Alzheimer’s language “disrupts the exchange circuit on which successful communication depends” (192) and is thus a rich source of alternative creativity. Employing it in teaching marks a movement away from external pedagogical laws, which state that “You must write well and conform to all the established conventions for determining quality: grammar, organization, clarity, and all the other usual choices of correctness,” and toward an inner Law, which empowers students to write in “other exploratory and liberating ways” (193).

This inner Law disrupts basic pedagogical rules and has limitless potential to upset the “core that underlies writing pedagogy in general, thereby moving beyond symbolic accommodation into the realm of the Act” (194). It indicates openness to teaching innovative forms of language that will reach students across a wide range of abilities. It is, in short, “an exhortation to dare, to invent, to create, to risk. It is less a body of rules . . . than a willingness to give recognition and value to unorthodox, unexpected, or troublesome work” (196).

In a postpedagogy, the objective is performance rather than analysis. Through performance, one becomes intimately familiar with language, especially since when communicating with an Alzheimer’s-afflicted individual, one is first thrown into linguistic chaos. Paths must be followed without any inclination as to where they eventually lead. The present parameters of communication ignore a massive group of people who are unable to communicate, let alone persuade, though traditional means.

We read, we speak, we write, and we want for others to consistently do the same. Further, we are instructed that communication is possible only within the practices of a given discourse, or else we are not human. When discussing the decentralization of the subject, Joshua Gunn and Christian Lundberg have written that “Perhaps hospitality toward living and the dead implies that we give up our anxieties about the game and just play, never certain who will be manifest in the communion of the game, and never sure just how they will be manifest” (2).

Alzheimer’s patients can also benefit greatly from this “play,” even if by having their forms of communication destigmatized. Because it presents another way of remembering, this form of writing provides those with memory loss with agency and inventiveness. Too, it creates new possibilities for remembering that may not be provided elsewhere. In sum, this is an absolutely radical statement of cure, not at the medical level but at the level of personhood, at which we may reach beyond the limitations of scholarship and find ourselves hopefully forever. 


Works cited:

Gunn, Joshua and Christian Lundberg. “’Ouija Board, Are There Any Communications?’Agency, Ontotheology, and the Death of the Humanist Subject, or, Continuing the ARS Conversation.” Rhetoric Society Quarterly.  35.4 (2005): 83-105. Web.

Harré, Rom, and Steven R. Sabat. “The Alzheimer's Disease Sufferer as a Semiotic Subject." Philosophy, Psychiatry, & Psychology. 1.3 (1994): 145-160. Web.

Rickert, Thomas. Acts of Enjoyment: Rhetoric, Zizek, and the Return of the Subject. Pittsburgh: University of Pittsburgh Press, 2007. Print.

  1. David

    Hillard nails it when she begs us to focus on what language can do rather than what it means, whether when teaching healthy students or spending time with a person with Alzheimer’s disease. While what others say can sound a lot like word salad, for the speaker the very act of communication can be a liberation, even when precision and fact-checking is out of the question. While Hillard’s way of connecting with a patient, in this case, is awfully intellectualized, the act of listening is something that anybody can do, regardless of one’s philosophical framework. Just pull up a chair and engage.

  2. Donora

    Hello, David, and thank you so much for reading and commenting. Everything you say is spot-on, especially the “awfully intellectualized” approach; I find most academic/intellectual practice to be incredibly painful and performative, and those aspects of this piece were by far the most difficult for me to articulate. The listening — the listening is always the thing.

  3. Bruna Mori

    I love this approach. What’s often left out of the “philosophy of following around the ‘madman’ in twentieth century literature” is precisely the benefit to the patient. Thanks for that perspective.

  4. Jesse

    What a strange and beautiful poem. So lyrical and mysterious. Great article.

  5. Donora

    Bruna and Jesse, I am just seeing your comments now. Thank you from the bottom and top of my heart.