Holding on to Literacies: Older Adult Narratives of Literacy and Agency

by Suzanne Kesler Rumsey


Abstract

Based on descriptive narratives of older, homebound adults, this article articulates how holding on to literacies is a vital part of staying engaged as an older adult. It traces a parallel between the idea of aging and literacy development. Employing the concept of heritage literacy—the decision-making processes individuals use regarding whether to adopt, adapt, or alienate various literacies and technologies over time—the article theorizes more extensively the heritage literacy practice of alienation. Alienation from literacies becomes a particularly important part of our understanding of literacy development in light of widespread experiences of aging, such as when physical health, mental health and acuity, social connection, spiritual health, or maintaining independence are challenged because of age. By examining how literacy is employed in agentive and nuanced ways in the lives of homebound adults, the article shows the impact that literacy has on aging and the impact that aging has on understandings of literacy throughout the life course.


Keywords: older adult literacy, aging, age, alienation, heritage literacy, aging well


Contents

Introduction

Explanation of the Study

Review of Literature: Casting a Wide Net

Literacy and Aging Well

Conclusion: Holding On, Letting Go

Endnotes

Works Cited


Introduction

In her 1995 seminal work discussing the accumulation of literacy, Deborah Brandt says that we might visualize the effects of literacy “as developing in two directions—vertically (a piling up) and horizontally (a spreading out)” (651-52, emphasis added). She goes on to explain,

Literacy ‘piles up’ . . . in the rising levels of formal schooling that begin to accumulate (albeit inequitably) in families. It is useful to consider the impact of rising levels of schooling on the way that new generations of learners encounter and interpret literacy. Literacy also ‘piles up’ in . . . a residual sense, as materials and practices from earlier times often linger at the scenes of contemporary literacy learning. . . . In addition to this vertical accumulation, literacy has literally spread out across the century, reorganizing an array of economic, legal, political, and domestic activities. The increased powers accorded to print have sharpened the need for reading and, increasingly, writing to navigate life. (651-52, emphasis added)

The idea that literacies accumulate is particularly important to studies of literacy acquisition and provides a foundation for studying literacies across generations. The impact of Brandt’s work in the field of literacy studies cannot be overstated. Yet Brandt’s concept of accumulating literacies focuses primarily on a sense of development or building of more, piling up more and spreading out more. Its emphasis seems to be first on the shifting standards or “levels” of schooling and literacy, and second on the forward movement and the developmental aspects of literacy within shifting cultural and economic factors. Certainly, over time the “piles” of literacies grow or accumulate for all people as they age, and those piles and spreads of literacy alter with age. But what happens toward the end of a life course when literacies might no longer be gathering or building but, instead, simply maintaining or even dispersing? What happens if a person’s physical health or slowed mental acuity limits employing those accumulated literacy practices or limits additional piling or spreading of literacies?  How might our understanding of literacy change when we see acceptance of those limitations? How do older adults hold on to literacy practices, and what role does literacy play in aging?

Brandt’s foundational work heavily influenced my own previous autoethnographic work among the Amish and five generations of my own family, in which I explore a concept I call heritage literacy and suggest that it is a means of understanding “how literacies and technology uses are accumulated across generations through a decision-making process. As literacy for an individual, community, or group accumulates, contexts, objects, tools, and needs change; in turn, community members adapt to the changes, adopt the changes, or alienate themselves from the changes” (Rumsey, “Heritage Literacy” 575-76). Further, “heritage literacy emphasizes not just the ‘piling up and spreading out’ of accumulation, but also the ways that literacy practices pass back and forth between generations; the old inform the new, the new impact the old. Heritage literacy pays careful attention to the choices that individuals and communities make about their literacy development” (Rumsey, “Heritage Literacy” 577).

Yet the shortfall of my previous explanations of heritage literacy is similar to my critique of Brandt’s concept of accumulating literacies: I focused primarily on a “forward trajectory” of literacy practice. While heritage literacy posits a continuum in which individuals make choices over time to adopt, adapt, or alienate, most of my examples of the principle are focused on how new generations will adopt or adapt older generations’ tools and literacies. For example, in “Heritage Literacy,” I offer the practice of quilting in my family as it has developed from our Amish heritage, and over time, with developments in technologies: from hand stitching plain swatches of fabric to sewing machines, cartoon-themed fabric, and even to digital movies that “stitch” visual and textual elements together. This example illustrates adoption and adaptation, a forward trajectory of literacy development, from old methods of meaning making to new methods. But few examples of heritage literacy enacted in lives illustrate the concept of alienation, and those that do still focus on younger participants’ choices of whether to join the Amish church (Rumsey, “Coming of Age”), which still has a sense of forward movement.1

I believe that my concept of heritage literacies and the decision-making processes whether to adopt, adapt, or alienate offers an apt approach to understanding older adults’ literacy practices. Adoption, adaptation, and alienation—in the way I originally theorized them—illustrate how older adults employ the same agentive decision-making process that we all do in order to use literacy, or choose not to use literacy, as they continue to negotiate the changing social, financial, political, and legal aspects of life and age. Older adults have agency in deciding when and if and how to use the tools at their disposal. They have agency in deciding to accept the loss of those tools. And when theorized more completely, the concept of alienation offers the obverse perspective: a means by which we might investigate the impact of aging on literacy practice itself.


Explanation of the Study

Working independently and with a local nonprofit organization that serves homebound older and disabled adults, I interviewed a total of fifteen individuals over the age of sixty-three during the winter of 2011.2  I set out, initially, hoping to address an apparent lack in the field by investigating the literacies of older adults in particular, much like any sociocultural literacy study that examines a given population, such as Shirley Brice Heath’s research in the South Carolina Piedmont, Beverly Moss’s work in African-American churches, and Marcia Farr’s research with Chicago Mexicanos. I perceived a dearth of information in literacy studies regarding the specific and unique literacy practices of older people themselves (as opposed to the practices of individuals who were older and part of other studied populations), but I did not feel I had enough information to construct a rich and nuanced study of their lives without first asking some very basic questions. In addition to adding to the field of literacy studies, I hoped to be able to offer perspectives of this facet of older adults’ lives to more traditional gerontological studies.

These basic questions framed my semi-structured interview process: What do older adults read and write every day? What genres are most important to them? Why? How much do they read and write? What do they think is most important about those genres? Interviews were between thirty and sixty minutes. My fifteen participants ranged in age from sixty-three to ninety-two. (I had asked for volunteers over the age of sixty-five, but found when I interviewed that one participant was younger than the requested age-range. I chose to include her in the study because as a disabled, home-bound older adult, she still shared commonalities with others in the study.) Participants resided in four different counties in a Midwestern state. They lived in seven different communities ranging in population from a mid-sized city of 300,000 to a rural township of fewer than 450 residents. Education levels ranged from one participant who had not finished the sixth grade to another who is a retired medical doctor, with the majority of participants having at least a high school diploma. Ten participants were Caucasian, and five were African American; thirteen were female, and two were male.

I initially coded the data simply by grouping responses to each of my research questions. Such coding gave me a limited perspective on their daily habits, which I assumed was the main contribution this article could make. However, that means of coding offered few implications for either the field of literacy studies or the various fields of gerontology, and it offered only detached descriptions of the participants themselves. Upon recoding the data to look for larger themes, based on a more holistic approach that looked first at the person’s story, not just at her or his responses to a particular question, I found larger and more important aspects of their interview data that told a richer story.3

All but three of the participants were almost entirely homebound, meaning that they spent most of their days in their homes and only left when they must for a doctor’s appointment or other important event. Many of them noted that a family member or friend would drive them to such appointments. I have limited my findings in this article to those with such limited mobility, because I believe their living situations and interview responses most pertinently illustrate two important aspects of literacy practices throughout the life course: that of holding on to literacies as a vital part of staying engaged and independent as they age, and that of a more nuanced understanding of the heritage literacy practice of alienation. Further, by highlighting only four participants’ stories, I hope to offer a richer and more contextualized perspective of their lives and literacies.


Review of Literature: Casting a Wide Net

Broadly, the field of literacy studies seeks to examine the reading and writing habits performed by groups of people. Sociocultural literacy studies have examined pluralized understandings of “literacies” and cultures for more than three decades by scholars such as James Gee, Brian Street, and Shirley Brice Heath. Yet, in spite of decades of research providing ample evidence that literacy must be understood as a contextualized constellation of learned and tacit methods of understanding, popular discourse on literacy still circles around the belief that literacy is a universal skill set. To be literate, in its simplest definition, is “the ability to read and write” (“Literate”). Such a definition is not wrong, but it is limited—particularly in light of the myriad cultural contexts in which literate acts occur—and allows for a host of assumptions, prejudices, and stereotypes that affect how people act and react toward others. Assumptions about literacy subsequently lead to one of the grand narrative claims about the “literacy crisis” in America, which generally is aimed at public schools with regard to “why Johnny can’t read” (Flesch).4 Such claims now extend toward older adults’ literacies as well: claims might now seek to account for “why John still can’t read,” “why Martha can’t use a computer,” or “why Fred can’t understand his Medicare documents.”

In reality, even though “the ability to read and write” is not simply a universal skillset that everyone ages sixteen to 116 uses the same way in every situation and community, educational standards, public policy, and even the medical community still treat it as such; this results in continuing reductive, skills-based assessments of literacy, which ultimately illustrate only the inadequacies of participants and do little to benefit or honor those being assessed. Studies specifically of older adults’ literacies have often followed this skills-based, reductive model. One of the most-cited studies of older adult literacies is the 1992 National Adult Literacy Study (NALS ) conducted by the US Department of Education. A 1996 report by Helen Brown, Robert Prisuta, Bella Jacobs, and Anne Campbell offers the results from NALS participants 65 and older and states that they performed at “the lowest two levels of prose literacy defined in the survey” (Brown et al., xii). The types of literacy defined in the study were prose, document, and quantitative. The results also indicate that older adults “appear to have difficulty finding and processing quantitative information in printed materials” and that “four of every five older adults demonstrated limited document literacy skills” (Brown et al. xii; xii-iii). These results of the 1992 NALS have had a long-ranging impact on perceptions of older adults’ literacies.  

Though the US Department of Education repeated the NALS a decade later in 2003, articles as recent as 2009 (McCormack et al.) still reference that 1996 report rather than any data from the 2003 NALS. Further, the 1992 NALS study as a whole has been cited as recently as 2013 in an article called “Health Literacy Challenges in the Aging Population” (Mullen) and in 2014 in an article on the evaluation of printed health education materials, which included elements regarding those sixty-five and older (L. Ryan et al.). Clearly, the 1992 NALS results have had a strong impact on researchers concerned with older adult literacies. The results of the NALS prompted several more recent studies of older adults’ literacy abilities, most of which still rely on reductivist, skills-based understandings of literacy. In particular, there is a growing body of work concerned with older adults’ abilities to read and understand increasingly complicated medical information. Indeed, even a cursory Google search with the generic phrase “older adult literacy” offers immediate returns from www.health.gov, the Centers for Disease Control, the Online Journal of Issues in Nursing, and the National Institutes of Health.5 In response to concerns about the limited medical literacy of older adults, a plethora of recent studies has been done in the fields of nursing, medicine, social psychology, and geriatrics to assess older adults’ “level” of literacy according to various quantitative scales;6 the readability of medical documentation designed for elderly patients;7 what measures medical caregivers should take in caring for those with limited health literacy;8 the ramifications of limited health literacy for elderly patients;9 and the long-term effects of limited medical literacy on the field of healthcare and on society a whole.10

Studies in the fields of medicine and geriatrics have also been conducted involving computer technologies, faith, and autobiographical and creative writing. Tim Broady, Amy Chan, and Peter Caputi offer an extensive literature review exploring the attitudes toward computer literacies by both young and old participants. Thomas Arcury, Sara Quandt, Juliana McDonald, and Ronny Bell investigate how rural, older adults “use faith and religion to help them manage their health” (56); reading scriptures and other religious literate acts are an integral part of their lives. Rita Rosenthal’s 2008 study examines the ways that computer-literate older women are motivated to continue learning, as well as the obstacles to their success. Similarly, Karin Slegers, Martin van Boxtel, and Jelle Jolles investigate computer literacy among older adults and how older adults use “everyday technologies” (92). Nancy Richeson and James Thorson explore the uses of autobiographical writing and its benefits to older adults, and Joan Barry’s article “Autobiographical Writing: An Effective Tool for Practice with the Oldest Old” depicts how social workers employ autobiography as a means to assist adults over the age of eighty-five.

More pertinent to my discussion here, sociocultural literacy studies have examined cross-generational literacies. Brandt’s Literacy in American Lives traces the history of literacy development by offering literacy narratives of more than forty people, several of whom are older adults. Similarly, Gail Hawisher and Cynthia Selfe’s Literate Lives in the Information Age offers the perspective of several older adults throughout the text, and my own work explores the passage of heritage literacy practices across five generations of my family and the surrounding Amish community (Rumsey, “Heritage Literacy”). Ruth Ray’s work, Beyond Nostalgia, offers an account of her participation in six senior center writing groups and the development of the late life writers through narrative. Technological literacies are addressed by Heidi McKee and Kristine Blair’s 2007 article “Older Adults and Community-Based Technological Literacy Programs,” which describes their experiences teaching in technology literacy programs for seniors in two different areas of the country, and by Lauren Bowen’s 2011 article, “Resisting Age Bias in Digital Literacy,” which argues—based on the literacy narrative of an eighty-one-year-old woman—that literacy researchers should pay greater attention to older adult readers, writers, and learners. Here Bowen challenges us to rethink and continue to negotiate our perceptions of digital literacy; in a 2012 piece, Bowen explores how literacy plays a central role in a “curriculum of aging,” or “in cultural perspectives of aging” by analyzing AARP publications (“Beyond Repair” 483). Finally, Suzanne Rumsey, Lauren Bowen, Ruth Ray, and Donora Howard’s 2012 collaborative book chapter examines the merits of collaborative and community-based learning with older adults.               

The field of Disability Studies11 has also weighed in concerning the literate lives of older adults. In particular, Jay Timothy Dolmage calls us to reconsider “imperfect, extraordinary, nonnormative bodies as the origin and epistemological homes of all meaning making” (19). In other words, disability is not an impairment to be overcome, but the very means for producing meaning; by repositioning it, disability becomes a veritable fountainhead of rhetorical possibilities. The hope is to see disabled bodies, and I might add “disabled” literacies, as more than “stigma and disqualification” (63).

Together the studies discussed above paint a picture of older adult literacies being a topic of concern to teachers, researchers, and those in the medical field. And yet, such studies have only scratched the surface of the contextualized ways that older adults might employ literacy as they maneuver being homebound or disabled, ceasing or reducing regular employment, or engaging with the evolving technological landscape. McKee and Blair have noted that, particularly in technological literacy use, “[o]ur society . . . certainly fetishizes young people” (25), and Bowen has articulated an “ageist ideology of literacy” (“Resisting” 587). Unfortunately, literacy is still largely seen as a pedagogical concern, rather than an anagogical one; many sociocultural literacy scholars focus on youth or school-based, K-16 literacy acquisition.12 An emphasis on youth culture and K-16 literacy practices is certainly practical for those of us in academia, as these categories comprise the majority of our students and address their needs, but this emphasis does little to interrupt the pervasive public norms of progress, success, and upward mobility associated with literacy. Such an emphasis continues to degrade the literacies that older adults possess. Consider the story of older adult Dwayne Lowery in Brandt’s seminal work, “Sponsors of Literacy”:

What Dwayne Lowery was up against as a working adult in the second half of the 20th century was more than just living through a rising standard in literacy expectations or a generalized growth in professionalization, specialization, or documentary power—although certainly all of those things are, generically, true. Rather, these developments should be seen more specifically as outcomes of ongoing transformations in the history of literacy as it has been wielded as part of economic and political conflict. These transformations become the arenas in which new standards of literacy develop. And for Dwayne Lowery—as well as many like him over the last 25 years—these are the arenas in which the worth of existing literate skills become degraded. (176, emphasis added)

Dwayne’s story of shifting standards is mirrored in the stories of my participants. In the context of a youth-centric understanding of literacy, Dwayne and other older adults face standards that are not relevant to their literacy history, literacies with which they are unfamiliar, and a minimization of the literacies that they do possess.

As the grand literacy narratives have shifted to “include” older adults, a strong emphasis on medical literacies and a privileging of youth culture have together led to increased stigmatization of elders and their literacy practices. In fact, prescriptive definitions of “being literate” emerged as well as notions of “successful” aging; both causing extensive debate. “Successful aging” is defined by Rowe and Kahn as “including three main components: low probability of disease and disease-related disability, high cognitive and physical functional capacity, and active engagement with life” (433). The original intent of this term was to “counteract the longstanding tendency of gerontology to emphasize only the distinction between the pathologic and nonpathologic, that is, between older people with diseases or disabilities and those suffering from neither” (433), because such an inherently ageist binary fostered ideologies that position older people as a burden on society. Several medical and gerontological studies have addressed general well-being, “active aging,” or “successful aging” as it applies to physical, emotional, and mental health.13 Pertinent to the parallel between literacy and aging, Kim Boudiny’s discussion of active aging notes that there are qualitative studies that show how “‘ordinary’ activities such as reading, solving crossword puzzles and gardening” are a “more important indicator of [older adults’] involvement with life than highly social or physical ‘youthful activities’” (1088).14 Successful aging as a concept has done much to break down several negative tendencies regarding older adults. The concept is a means by which the medical community began to account for the “whole person” and not just their diseases. And the concept made it feasible for more quantitative studies to be done to illustrate additional indicators of a life well lived.

Yet in the context of this article, it must be noted that the idea of “successful” aging is fraught with controversy. On the one hand, it is intended to combat ageist ideologies, but on the other hand, it creates a hierarchy and set of standards or expectations that older adults are then expected to meet. Stephen Katz and Toni Calasanti offer an overview of this debate, and they note that the “most contentious critiques of the successful aging paradigm target those whom it excludes” (29). Further, if older adults do not meet the expectations of “successful aging,” they are further stigmatized—much as skills-based evaluations of literacy are reductive. When the idea of successful aging is positioned vis-à-vis literacy standards, it seems that older adults face a double sentence of condemnation.

Taken together, the youth-centric, upward mobility norms of literacy and “successful aging” cast older adult literacies in a negative, limiting, and downward spiral. Further, as Jay Dolmage notes, myths about disabilities abound, and older adults are always already assumed to be lacking. The myriad studies from medicine, geriatrics, social work, and nursing offer few alternative narratives, and the field of literacy studies has only begun to address older adults. But as Lauren Bowen writes,

By paying closer attention to the work of older adults, whose literacies are undervalued by default, we begin to make transparent the ageist ideologies that infuse our professional and public discourse on literacy, learning, and technology, and to move beyond such youth-centered understandings. Through continued attention to elder’s literacies . . . we might see literacy less in terms of measuring up to the most recent technological innovations and more in terms of how individuals regularly innovate in order to make meaning in their everyday lives. (“Resisting” 602-03)

My hope is that the descriptive narratives, analysis of heritage literacy, and consideration of literacy vis-à-vis concepts of aging offered in the next sections help to foster and continue ongoing negotiations of our perceptions of literacy across the entire life course and our perceptions of loss as well. For “[o]nly when the age continuum is recognized in full can we sufficiently appreciate the active and changing nature of literate lives” (Bowen, “Resisting” 603).


Literacy and Aging Well

Acknowledging that the idea of “successful aging” is a controversial one, the remainder of this article will use the term “aging well,” because it is more in line with the work of humanistic gerontologists like Ricca Edmondson and Hans Joachim von Kondratowitz15. I see aging well as those elements that my participants named as being important to their feeling satisfied, affirmed, optimistic, constructive, and accepting of change as they age. Much as disability studies repositions disability as the locus of rhetorical agency, Maureen Tam notes that while there are numerous definitions of what has been called “successful aging,” there are two main perspectives: “one that looks at successful aging as a state of being, a condition that can be objectively measured at any time; and one that views aging as a subjective experience where opportunities should be provided for elders to tell what they mean by successful aging and the underlying factors that they regard as important” (Tam 882, emphasis added). I opt not to use the term “successful aging” because the idea of success is culturally constructed and troubled in its overlapping meanings and use. Yet I find the above quote, particularly the emphasized portion, to be an apt way in which to describe factors that my participants voiced as mattering to them and their lives: physical and mental health, relationships, cognitive function, a sense of well-being, independence, “active participation, learning, development, [and] contribution to society” (882-83). Individuals in diverse contexts will value each of those factors differently.

My emphasis on aging well is a reflection of the data I collected. When interviewed, participants wanted to convey what they found most important, helpful, positive, or useful to them and their ongoing literacies. Interview data collected from my participants coalesced into five basic “factors” that they identify as crucial for aging in later life: physical health, mental health and acuity, social connection, spiritual health, and maintaining independence. These factors are not independent of one another, nor are they hierarchical. They are a constellation of interconnected elements that together illustrate the literate lives of older adults. Participants all show signs of decline as a result of physical and mental limitations, which in turn limits their literate activities, and yet they also showed signs of acceptance and purpose. Participants also show signs of holding on to social connection, to faith, and to independence, all portrayed through their daily literacies as well.

I have opted to organize this section by first describing the factors themselves; I will then move into descriptive vignettes of four of my participants. Organizing the document this way enables continuity in the story and description of each person. It also demonstrates the ways that the five factors play out together within a single person’s literate life.

The factor of physical health is concerned primarily with the physical bodies of the participants. As they have aged, their bodies have changed—often declined—in ability and mobility. Sarah’s declining eyesight and health prohibits the literacy activities she once enjoyed; Barbara’s declining health has determined that the bulk of her reading be about her ailments; and several other participants have adopted iPads, magnifying glasses, large print books, phones with larger buttons, and computer technologies to assist their changing physical abilities.

Mental health and acuity as a factor of aging well is not so much about particular mental diseases such as Alzheimer’s or Parkinson’s that degenerate the mind of an aging person. Instead, mental health and acuity in my participants’ data are concerned more with cognitive and psychological well-being. Participants are concerned with “staying sharp,” keeping mentally active, and stimulating their minds. As Arleen said, “I feel if people my age are able to read and able to write, they need to do it. It keeps things working. It’s the same as if you don’t walk, after a while you’re not able to walk.” Examples of such mental activity can be seen in how Arleen explains that keeping her mind active helps her to not focus so much on her physical limitations and in how Camille has written her life story as part of her stroke rehabilitation process.

Spiritual health is a factor similar to mental health. Participant data indicates that maintaining their faith practices is a key component to their success. By “practicing” or engaging their spirits through literate acts, they are able to hold on to what is most important in their lives. This is illustrated most aptly by Sarah, whose health has deteriorated so much that she can no longer read biblical scripture. Instead, because engaging her spirit is so vital to aging well, Sarah listens to scripture using CDs her family purchased for her. Similarly, Barbara’s daily reading of scripture helps keep her grounded in the face of myriad physical ailments.

Social connection is a factor that illustrates the agentive actions of older adults to hold on to both literacy and to the wider community, such as in the case of Sarah, who reads the obituaries when she is able in order to see which of her friends has passed away. Similarly, maintaining independence is a factor of aging well and an illustration of holding on to literacies and holding on to agency. This factor is evident in how Sarah puts great importance on being able to simply sign her own name and in the ways that Camille advocates for her own health by journaling.

Finally, before shifting into the vignettes themselves, it is important to note that these five factors, as embodied in the stories of these participants, illustrate the decision-making processes of heritage literacy as individuals agentively—if sometimes tacitly—let go of some literacies, or hold on to or adapt others. A more thorough explanation of heritage literacy practices is developed in the next section, but the concept of heritage literacy bears mentioning here, as well, as we move into the individual descriptive vignettes.

 

Sarah
Sarah’s interview occurred on a snowy day in the early months of 2011. I traveled barely-plowed roads about an hour and half to an extended care nursing facility several counties away to meet with her. Sarah’s interview vignette most aptly demonstrates all five of the factors that constitute aging well working collectively, and her interview illustrates both standardized perceptions of literacy as well as heritage literacy practices in the tacit ways she engages with meaning making.

Sarah was eighty-three at the time of the interview. She explained that she went through the 9th grade and “then I got married and had seven kids. My education grew considerable – [laughing] – just through life. When my kids got growed up, they never quit their wisecracking. One of them’s got a shirt that says “Went to the University of Smith Development” or something like that… just to be silly[her last name is Smith16].We learned everything at home.” Sarah doesn’t devalue her school-based learning, but clearly she highly values the learning she had done at home with her family.

In fact, like many of the older adults I interviewed, the school-based learning seemed tertiary to the real meaning making she did throughout life. Of her formal education, Sarah said, “They did not teach you to learn to read and write before you went to school. ABCs was hard. We was supposed to memorize the ABCs. They was hard for me. It was hard to learn, and even now when I want to know where a certain letter is I have to say it by heart to find it. I don’t spell good and I don’t do arithmetic very good. As my kids left home I had no one to ask, so I use the dictionary.”Sarah is at once humbled by her perceived lack of literacy skills and proud of the ways that she creates work-arounds to do what she needs to do at any given time. She has adopted the conventional ABCs of literacy, but she has adapted them to her own purposes. And she values “the school of hard knocks” much more.

The adaptations of literacy are also clearly seen in how she uses available tools today. Sarah can no longer read or write very much in the traditional sense. She said,“Because of my eyes I couldn’t read. But my kids got me a whole Bible on disc. And so I have got little disc player, and I read a whole Bible, well I can; I haven’t yet ‘cause I just got it at Christmas and I go sleep before I hear [all of the Psalms]. So [my daughter will] tell me how to get back to where I was. But I brought it up here and I play – I think it was part of Job. And then it starts the Psalms. I never have heard all the Psalms on there.” When I asked Sarah how much she values the disc player, she said, “Oh my. I was so tickled and so surprised I think I may have soiled myself. [laughing] But I was just so surprised. They told me later that it was a little more than they normally spend for Christmas but they saw what I needed. When you can’t read the bible, it’s bad.”

And yet, like most older adults who were taught only conventional, ABC literacy, Sarah does not consider the disc player to be a literate activity. Though she values it highly, she said, “Well, that’s the bible, but that’s not reading. If I could I would read a whole passage every morning. If you could see my bibles they’re marked up so much it looks like they’ve been misused. But they’re not. That’s the way they’re supposed to be. If you use them, they show it. [It’s important] because it’s God’s word. It’s my roadmap to heaven. It helps me. It makes me feel better. It renews my strength.”

Clearly Sarah places a high value on physically reading biblical scripture. And clearly, based upon conventional literacy standards, she does not consider listening to her disc player to be reading. She is saddened at the alienation from such an important aspect of her faith. Yet there is a tension in her statements that is revealed a little later when she describes her bible reading in more detail. She said, “At home I have the bible on [cassette] tapes, and my tape player broke. That’s why they got me this [disc player]. I would listen to the tapes and read the bible at the same time. And that made it more clear to me. I got more out of it, and I didn’t have to pronounce those nasty names in the old testament [laughter]. I liked to do that and I will do that with this [disc player].”It turns out that Sarah has been adapting her pen and paper literacy for years with the use of audio technology. Her use of the disc player now shows continuing, agentive decision-making that she hardly seems aware of.

In spite of her declining eyesight and health, Sarah is able to read the newspaper a bit if she’s feeling well.“I get a [newspaper] through the mail on Tuesdays, and if I’m not ill I read it a little bit. I don’t read the advertisements in it. But I’ll read the obituary . . . to see who, which one of my friends has passed away this week. You never know. My bedmate, they just took her to the hospital last night, and I’ve known her for thirty years. They just took her to the hospital last night; she’s not doing very well. They got her on a ventilator. It’s just not right…. so that’s why I read it. Not because I’m afraid I’m gonna die; I don’t care when I die. I’m ready to die; I know the Lord. And I’m ready to die. I could die tonight and it wouldn’t bother me. If I thought I was dying, I’d say Yay!” I asked if she was tired of not feeling good and not being able to care for herself. She replied,“Yes. Exactly. Exactly.”

A year ago, Sarah was able to write letters and cards, but now she can only sign her name on checks or documents like the consent form. “I’d send out cards to people who were missing church or were sick. I can’t do it no more.” She also wrote in a journal before her health prohibited it.“I don’t actually know when exactly I quit writing in a journal. I just told my daughter where they were. For when I’m gone.”When I asked Sarah what the most valuable kind of writing is, she replied, “Being able to sign your name. Because if you couldn’t sign your name somebody else would have to be responsible for . . . checks and legal documents. I just think that would be bad if I couldn’t do that. If someone has to sign your papers for you like this or like my checks, it breaks my heart my son has to sign my checks, but they couldn’t hardly read my writing anymore. If they didn’t know me at the bank they probably wouldn’t cash them . . . .”

Sarah shows both the tenacious holding on of literacies at the same time as she’s showing the agentive decision to alienate and let go of literacies. She reads obituaries to keep track of and mourn the loss of her friends, but she is calm and matter of fact about the thought of her own death. She grieves the loss of her ability to handle her own bills, but she is thankful and accepting of the help offered by her son. There is both grief and acceptance of the loss or adaptations of her literacy practices.

What isn’t as clear about Sarah’s interview vignette is that she shows both grief and acceptance of the decline in her own health and the ways that that impacts her literacy practices. Sarah interviewed with me from a hospital bed where doctors were treating her for double pneumonia, a kidney ailment, and other health issues. During our brief conversation, we had difficulties positioning the microphone so that I could hear her weakened voice over the sounds of the machines in the room. We were interrupted by a healthcare worker who, in order to care for Sarah, needed me to move. Sarah had many coughing fits, and she asked me to help her take drinks of water. We were also interrupted by another nurse asking if she wanted or needed anything (including ice cream from an ice cream social down the hall). Sarah’s situation realistically enacts literacy activities of older people, particularly those with declining health.

Sarah’s interview also clearly illustrates all five of the factors of aging well. Her physical health is declining such that she has adapted her reading of scripture to listening to it via disc player. Sarah’s interview shows the value she places on reading a holy book for her spiritual well-being. It is the one book she and her family have ensured that she can continue to “consume,” though she can no longer really read it with her eyes. The reading that she does do on occasion is the newspaper obituaries; for Sarah, the newspaper offers a specific kind of connection to her community, as it tells her which of her friends has passed away. This connection is also poignant, in that she herself isn’t afraid of death. In this way, the reading of obituaries also seems indicative of her mental health: she chooses to focus on others and on what is real rather than allowing her ailments to overtake her entire life. Sarah shows continued efforts to connect with her family. She values leaving a legacy of literacy for future generations. She can no longer journal, but has told her daughters where to find her journals “for when I’m gone.”

Though she isn’t aware of her decisions to adopt, adapt, or alienate, Sarah’s heritage literacy practices show she maintains her agency in the process. She both tenaciously holds on and has come to accept the loss of a variety of literacies and technologies. Even as she values conventional, linear understandings of literacy, she challenges those notions by her behavior and decision to include audio in her study of the bible.       

 

Camille
Camille’s interview took place in her apartment in the same metropolitan area where I live. I only had to navigate to downtown to find her. Upon entering the senior apartment center, I noticed that it looked and sounded much like the facility in which my great grandmother lived at the time. Also, it smelled like someone was baking pie. Camille, originally from Tennessee, maintained a small twang to her speech that she laughingly explained never changes no matter how long it has been since she’s been back home.

At age sixty-seven, Camille has been homebound, in a wheelchair, and on disability since surviving a major stroke at the age of forty-three. Speaking of her stroke, Camille said, “It makes you change your life. I’ve been on disability. They don’t hire you if you only got one arm, you can’t do nothing or go nowhere. . . . People don’t realize just how fast it can happen. . . . I woke up and I couldn’t move my arm, couldn’t move my leg, couldn’t talk . . . I had three surgeries in six months . . . I thought I wasn’t going to get out of that place, that I was going to be a lifetime resident.”

But get out she did. As part of her vocational rehab, and with the use of only one hand, Camille wrote her “life story” using a computer. Clearly this one artifact has had a profound impact on Camille’s perceptions of her literacy development. It shaped how she has come to perceive her standardized literacy practice and her level of education. When asked about her level of formal education she said, “I graduated from HS but that’s about it though.[long pause]When I had my stroke they did vocational rehab. They had me learn how to write a story on a computer. I chased that thing all over the place, my story. You know how you don’t know what you’re doing on a computer and you lose it, I lost it so many times on there. Had to go dig it out again. I found it. I’d be writing it and I’d hit a wrong thing and it’d be gone. It just vanished on me, lousy thing.”

Camille associates her level of schooling specifically to her learning after the stroke, the writing of this document, and the challenges she faced with learning to use the technology. In essence, she has embraced the “fundamental embodiment” (Dolmage) and her disability is now not an impairment to overcome but instead the very means of producing meaning.

Of her life story, Camille had much to say. When I asked what kind of writing she does, Camille said, “well come on I’ll show it to you. It took me a while. I had to do this for a thing for school [rehab]. That is small print, but there’s a reason it’s small. I didn’t know how to make it bigger. It’s the story of my life. Vocational rehab, that was one of my assignment. . . . See how it’s together like that so you turn the page like a book. I don’t even know how I done it. But I did it. It’s been about 10 or 15 years ago, but I keep it. It’s on the internet somewhere but I don’t know where. My son, he said he found it on the internet. My kids won’t read it. They say it’s too sad. But it had to come out because I was holding all that in. It was the best thing I ever done was write a story about myself. It worked. It made me feel a lot better.”   

Later in the interview Camille said, “That is something that everyone should have to do if they’ve been sick. It would help them . . . This here is a valuable thing . . . I called it ‘Changes’ because it was one change after, you know. . . . it ruined my whole life this thing did. It was something that was completely . . . [here she is unable to speak from emotion]. This is a healing process, is what it is. It really heals. Everybody should have to do this. It will help them.”              

Unmistakably, she highly values the story itself, and she values it for what it meant for her emotional, spiritual, mental, and physical healing. But I see, too, that the story acted as a pivot point for how she viewed her own literacy and education. When I had asked about when she learned to read and write, Camille responded, “When I was in kindergarten, no I didn’t go to kindergarten cause I didn’t make it. First grade. I think I was too dumb to learn at home. I was never right. I mean, I could never learn like my brother. My brother was smarter than me. He was more luckier than I was too. . . But I could paint and he couldn’t. I could do things he couldn’t do. I painted all these [indicates art in her home]. That’s what I do . . . You know I thought at one time that if anything ever happened I could always make something look pretty. I could. I had that talent and I could do that.”

Further, because of her stroke, Camille is no longer able to use one of her arms. When I asked if she reads the newspaper (a common response from other participants), she replied, “No because I tell you what it’s hard to for me to do cause I gotta turn the pages with one hand and it gets all wadded up and I get mad and I just have a fit and throw it on the floor or something. I get on CSPAN or something like that.” Further, she is unable to balance her checkbook.“I don’t use that side of my brain. I use the side, the artist part. I don’t use the numbers side 'cause that one is mostly blank. I have my sister-in-law for that. She does my checkbook for me.”

Finally, Camille uses literacy as a means of advocating for her health: “I like [to read] medical stuff. I had Cushing’s Disease is what I had and I figured out what I had, what was wrong with me. The doctor couldn’t do it so I found it. I got hurt at work one time and I had to go to the hospital, and [another doctor] says, ‘you look like you got Cushings.’ I didn’t know what Cushings was . . . I looked in my medical books and that is exactly what I had. So I went back to my doctor and said ‘I want to be checked for this.’ That’s what I had was Cushings. And it’s rare, it’s really rare. It’s one of those things like you’d see on House, on TV, you know like one of his diseases, a rare one.” She also said,“I do look up medical stuff 'cause I want to see . . . 'cause I’m sick all the time. I’ve got every ailment. I mean, I got thyroid trouble and uh . . . I read on there the other day that with thyroid trouble you could have fifty-nine different ailments, and I’ve had fifty-eight of them. I know I have. I am always searching for something. I had one doctor tell me I was a hypochondriac, so I changed doctors. I was on birth control pills sometime when I was younger, you know, and I was allergic to those things and they didn’t make me feel right. I had all these different ailments. He goes, ‘They got names for people like you.’ He called me a hypochondriac, so I never went back again. If he’d have just paid attention he’d have realized I was allergic to the pills I was taking. They don’t pay no attention.”

So, even though her stroke prevents her from many standard literacy activities, and even though she grew up believing herself to be “dumb,” Camille is now able to say with pride that she is an artist. She has a talent that conveys meaning beautifully. I believe that the act of writing her life story acted as a catalyst for her to see herself as agentive and able. She adapted to her perceived intellect and adapted to the physical limitations brought on by her stroke. She is both firm in her resolve to continue her life and literacy and accepting of the losses she has sustained. Alienation from something like a newspaper she takes in stride with a sense of humor. She uses her resolve and adaptability to advocate for her own health, stay connected with the world, outside her apartment, and maintain a cheerful and purposeful life.

 

Barbara
Barbara was the first participant I visited for this study. She lived in a small tidy house near one of the universities in my metropolitan area, but in an area of lower income and older homes. The house was clearly newer and was nestled between several that looked exactly the same. By all appearances, older buildings had been cleared away, and these newer small homes had been built for older adults. A church across the street had purchased the land to build these homes for older adults in their congregation. Barbara greeted me with the kindest smile and a handshake that felt like a tiny bird in my hand.

Born in 1937, Barbara was seventy-three at the time of the interview, and she was already a great-great grandmother with six living generations. Her mother was still alive, living in Chicago, but had Alzheimer’s. Barbara’s level of formal education was tied heavily to the continuation of those six generations. “I graduated 8th grade. I went into the 9th and completed half of the semester and then that is when I got pregnant. And my son was born at 16. I moved into my own apartment after that. He and I and the baby. After that it was like one, one, one, one, one, one, one . . . I had 7 of them. I had 53, 54, 55, 56, and then 57 I skipped, and then I had one in 58, 59, skipped 60, and had the last one in 61.” 

Barbara remembered learning standard literacy activities in kindergarten. “They used to give us these little sheets of paper, where they got the letters on there and you would have to draw where you could connect them and make like a C or an A.”She did not learn to read and write at home. She said of her parents reading and writing, “My mom didn’t. She wasn’t educated. She had to drop out of school at 8 years old to work and help the family. So she didn’t have any education. She could not write her name or she couldn’t read. But my step father taught her how to read and how to write her name and other things that she would need.” 

Undoubtedly, according to standard, linear perceptions of literacy level, Barbara’s is very low. With little formal education, a mother who was not literate at all, and a life that by all appearances was low in terms of socioeconomic advantage, Barbara appears to fit the stereotypes projected by the NALS. And yet, the further into the interview we got, the more rich, developed, and nuanced the story of Barbara’s literacy became.

It turns out that in spite of what stereotypes would put her at the lowest level of literacy, Barbara loved to read. One of the aspects of her adapting to the changes of aging is simply in the limitations it puts on her reading. “I don’t do as much reading now like I used to. I used to love books. I worked in a card and gift shop, and we sold books in there too. I would be hid in the back when we didn’t have customers, reading the books. I used to love to read. But my eyes tend to water and they tend to bother me more now, so I don’t read as much as I used to.”

The reading that she does do is still much more than many find time for. She regularly reads her bible. “With me it just sometimes a scripture come to my mind and I’ll open up to it and I’ll read. Maybe a particular verse that came that I’ll end up reading the whole chapter and it carries on to the next chapter and I’ll go right on down the line.”She also reads a lot of information that comes in from her church: “Here I have one to give you an example. This is from my church which is right here. [I like to] just get involved and read what we’re talking about [at church]. Sometimes they have interesting stuff like this.”

Barbara values reading her bible above all other reading. When I asked why, she replied, “Sometimes you maybe read something and you read right over and you don’t get it. You can go back and read it again and all of the sudden you say Wow, I didn’t pay attention to that before. So you . . . it’s really educational. It stimulates your brain if you do it often [whispering] like I should. But that’s what I get out of it. I will read . . . even my bible, I’ll read it and then all of the sudden I’ll go back the next week and read the same chapter and actually missed a whole verse or chapter that didn’t make sense to me then and all of the sudden it just unfolds in my mind … oh, that’s what that means!  With other things too . . . . Sometimes you read and you are reading too fast or you’re in a hurry. It’s different when you just take time and relax and you know just read for a while. You can get more out of it than you can when you say oh I’m going to take a quick few minutes and maybe read a book.”

I love how connected Barbara is to her literacy, though she would never see it that way. Instead of seeing her low level of formal education as a hindrance that forces her to read slowly and reread, she values the act of rereading because it gives her fresh perspective. And while her health and age prohibit her from leaving her home with any regularity, she still said of her daily reading habits,“I read everything. Mostly a lot of health books because I have many health problems and I try to find ways to deal with them in the natural state so that I don’t have to be taking a lot of drugs . . . a lot of health books I glance through 'cause I have about twenty-some different things going on in my body at the same time. So I try to stay up on it. They diagnosed me with Hepatitis C. I had surgery in '97. I found out that beets and [indistinguishable food] was good [for Hepatitis C].”She uses her literacy to advocate on her own behalf with doctors,“I don’t have to be put on ‘this drug’ because everything is a trial. You ain’t tried this and this doesn’t work, then they say so well we’ll try this. They don’t know what to give you and they just give you [more drugs]. And you don’t have any idea what you are putting in your body.”

In spite of reading so much, Barbara could  no longer use her hands very effectively because of tendonitis and carpel tunnel, so writing is minimal. She writes“as little as possible. I hate writing . . . 'cause it’s bothersome now so it really makes me hate it . . . I only write what I have to.”Barbara likes to send greeting cards because it is easier for her; cards convey a message without her having physically to write it. But the loss of her ability to write is not an easy one. “One thing for a while this hand here, I could sign two checks then I had to wait till the feelings come back in it. One month I had to get my neighbor to come over and write my checks out just so I could sign them.”In her continued efforts to write those things that she has to, Barbara says “I like the [pens] with the bulky rubber around there because it kind of gives me a little cushion.”

Barbara’s literacy narrative demonstrates a person with a limited formal education who hardly acknowledges this fact. Instead she focuses on reading for enjoyment, reading for spiritual health, reading to maintain her physical health, reading to advocate for herself and to maintain her independence. She has adapted her so-called limited literacy ability to live a productive and satisfying life filled with many books and many people. She showed frustration that she has to have help with writing checks, but she also shows acceptance of the changes in her life. Instead of wallowing or lamenting the loss of her hands, she finds ways to work around that limitation.

 

Arleen
I had another long drive to visit Arleen, as she lived several counties north of mine. Her home was a condo in a small senior living community. The walks had been cleared of snow, but the parking lot was still inches deep. Perhaps the community’s caretaker assumed no one would be leaving, given the weather. As I entered the home, Arleen asked that I wash my hands and leave my shoes by the door. I admit that I assumed these requests were just the idiosyncrasies of an older person. I was, however, wrong.

Arleen was sixty-six at the time of the interview and had been on disability for more than twelve years. She has a number of severe ailments that keep her entirely homebound. Her family must call ahead before visiting, wash their hands, and be extra careful not to bring sickness into the home. This explains her seemingly odd requests of me. But in spite of this physical limitation, Arleen has adapted. She said, “I’m involved with my family. I have children, I have grandchildren, I have great grandchildren. I try to fill my life with people. When they come to the door ‘are you sick? Do you think you are getting sick?’ They know the drill.”

In 10th grade, Arleen dropped out of school to have a baby and get married. But when asked about her formal education she replied, “I have awards, certificates. I never finished high school, I never went to college, but I went out for things I could get on my own. I took classes.”What kind of classes did you take, I asked. “Well different jobs I had, like, nursing, ok. I took CPR classes for state, non-violent intervention, and I drove van for council on aging. You had to take CPR and first aid. Driving classes. You had to take school bus training even though I didn’t drive a school bus. Working with the handicapped, disabled, and elderly.”Arleen joked, “I used to drive the van. Now I ride the van.”

Before leaving school, Arleen said she was a good student. Her parents taught her to read before going to school. “They read to me. Helped me with my homework. I was a good student, but I was not a good attendee. You have to go to school to get a good grade.”

Unlike other participants, Arleen’s main literacy activity is writing. In order to advocate for her health, Arleen’s daily literacy practices include keeping a health journal:“I chart my health . . . my temperature, the blood glucose level, respiratory, pulse . . . weight. … I keep a log every day as to what I do as I do it. When I take my medication, I write it down. I have a pill minder. Before I got that pill minder about six years ago, I just had the bottles sitting around and I’d worry “did I take it or not?” I’d think I took it, or I’d overdose. So now it’s the pill minder and I write it down.”

She has found that her efforts do help her doctors with her care: “I try to keep up on it. But I’m way ahead of them. They think I should just be curled up somewhere in a fetal position. Well, I don’t feel that. I guess I’m too spiritual. If God wanted me in a fetal position, I’d be there. There’s no reason I should even be alive, but I guess there’s things out there for me to do yet. And I realize I’m very ill, and I can handle that. That’s how I am. Other people, ‘Oh you poor thing.’ Well, get rid of that, I don’t need people like that. I can handle it. A lot of people can’t. Why give up? I’d rather . . . I try to keep busy. Mind, body, and soul. I’d rather die doing something than die doing nothing.”

Arleen also writes lists as part of her daily activity. “I have always wrote lists. When the kids were young there would be lists on the refrigerator and they’d make fun of me. Now they’re doing it . . . . And I do a “to do” list. It’s that long, but I don’t try to do that. As I do something, I check it off . . . then you know you’ve done something. I used to tell [my case worker], you must think just sit here and pick my nose all day long. She laughed and said, ‘No.’ But she thought I would be a good candidate [for this study], because I don’t just do nothing. I’m not able to go out and work, which I’d love to.”

Instead of working, Arleen uses journaling to help her family. “It keeps us connected. Our thoughts and feelings.”She said of her journals, “I think that is my way of writing a book. Maybe it’s like a biography. Because I’ve done this ever since I can remember I have these notebooks, and I have box after box. I’ve shredded some of them. My one son said, ‘oh mom don’t shred that stuff.’ But who’s gonna go through it? Who wants that? After sixty-six years there’s probably a book there somewhere. And we’re doing genealogy.”

Arleen’s story shows us aspects of physical and mental health as factors of aging well. She tries to keep busy “body, mind, and soul” and would rather “die doing something rather than nothing.” Her attitude is one of perseverance and focus. She both accepts her physical limitations and daily challenges those limitations. Clearly there are things she has had to alienate from because of her health, but part of her perception of success is that she doesn’t let declining health be the sole focus of her life. She acknowledges and seems to accept how big a factor it is, but she tries to “fill her life with people,” maintain a daily health journal in order to both assist and challenge her doctors, and keep a positive attitude that acknowledges but doesn’t bemoan her physical limitations. In these ways, she also stays mentally active and as engaged as she can be with her family and friends. Her health continues to decline, but she perseveres in part because she maintains the mental challenge of reading and writing and of managing her own health as much as she can. He final words for other seniors bore out this theme of staying mentally active: “I feel if people my age are able to read and able to write, they need to do it. It keeps things working. It’s the same as if you don’t walk, after a while you’re not able to walk.”


Conclusion: Holding On, Letting Go

The stories told by these older adults illustrate the decision-making process that I originally theorized as heritage literacy. To restate Maureen Tam: “Opportunities should be provided for elders to tell what they mean . . . and [to identify] the underlying factors that they regard as important” (882). My original explanation of heritage literacy highlighted stories that showcase the decision-making process that occurs “across generations. . . . As literacy for an individual, community, or group accumulates, contexts, objects, tools, and needs change; in turn, community members adapt to the changes, adopt the changes, or alienate themselves from the changes” (Rumsey, “Heritage Literacy” 575-76). Certainly, the stories above include many instances that illustrate this. Arleen has actively decided to adapt her literacies and technologies in order to work around her serious health limitations: “I try to keep busy, mind body, and soul. I’d rather die doing something than die doing nothing.” And Barbara’s story shows alienation, as she has reduced the amount of writing she does to almost none. She dislikes writing because “it is bothersome” for her hands.

For Camille, heritage literacy is both an active decision-making process and a reaction to the limitations her health has put upon her. After her stroke, in order to write her life story and heal both emotionally and physically, she learned to use a computer and adopted it as the primary means by which she both reads and writes. When she continued to have pain and illness, she adapted her reading habits to focus almost exclusively on reading medical books and websites. And her physical limitations forced her to alienate from certain literacy practices--specifically, reading a printed newspaper, because it is too difficult to do with only one hand, and balancing her own checkbook, because she can no longer use the “numbers side” of her brain.

The interactions my participants had bely the reductivist, skills-based understandings of literacy, particularly as it pertains to medical documentation. Each of them focused some of their reading and writing on consuming medical information in order to be an activist for their own health. They each felt a great sense of agency and authority about their research and knowledge, showing that they were able to read and use medical information both because of and in spite of efforts being made to make medical documentation more accessible, though it is beyond the scope of this study to ascertain the extent to which the efforts in the medical field are truly fruitful.

Through these stories of older adults living literate lives, I’ve come to understand richer and more compelling aspects of alienation than I theorized in prior work: sometimes it is the passing of time or the decline of physical bodies that dictates how and whether people can adopt or adapt existing literacy practices. Sometimes it is not their minds or will that make decisions about literacies; instead their bodies “decide” whether they must alienate a particular practice. Often their minds are of another opinion entirely about this process. (How many of us have aging parents who resist help, who resist moving into a new home without stairs or into a retirement community because they view that as a loss of independence and perhaps an acknowledgement of their aging bodies?)

What I’m trying to point out is that, in some cases, alienation from a literacy practice does not seem to be an active decision-making process, per se. Clearly it is not an accumulation—a piling up and spreading out—of literacy. Each of these modes of understanding literacy practices seems to have an emphasis on the progressive building up of literacies. When applied to a situation for an older adult who is now homebound, has increasingly limited mobility, has increasingly limited eyesight, or has limited understanding of various advancements in technologies that might aid in their reading and writing (e.g. computers, hand-held devices, etc.), the adaptations of literacy practices are also limited.

In these situations, literacy is not tied to an incline but to a decline. Literacy practices are no longer accumulating but dissipating. Instead, adoptions, adaptations, and alienations from literacies and technologies are tacit, instinctive, and in many cases a reaction to those outside forces that alter abilities. This is not to say that individuals are powerless in the face of aging and declining health. Quite the contrary is true, in fact. Every person in this study showed factors of what I call aging well and of holding on to literacies.

It must be acknowledged that the decline in their physical abilities is still a time place of agency, purpose, and personal development. The older adults in my study showed a remarkable, deep acceptance of their circumstances. They illustrate, perhaps, one of the deepest forms of agency—that is in letting go, in acknowledging, coming to terms, and accepting the losses of various literacy practices. Such acceptance forces us to rethink agency and literacy. It forces us to ask and answer difficult questions about implicit ageism in standardized literacy testing, stereotypes of older adults and those with disabilities, and assumptions we make about what literacy looks like and sounds like. It changes our notions, even, of what “holding on” to literacy might be.

Literacy as an abstract concept stands as a microcosm of the pervasive ideology of progress and upward mobility through hard work and education. But literacy for the individuals featured in this article isn’t really about progress or upward mobility any longer. It isn’t about getting ahead, acquiring a new literacy or technology in order to do more and do faster. It’s about holding on to dignity, independence, and agency. This is more than just a “maintaining” of literacies, for maintenance implies mere upkeep with the least amount of effort. Instead, holding on to literacy is active, engaged, and agentive. This act of holding on might well be instinctive, but it points to a foundational aspect of who we are as people and the place that literacy holds in our lives. And holding on might well be the agentive act of accepting loss, letting go, and acknowledging the loss of literacy.

I began this article by asking a series of questions about what literacies look like at the end of a life course and how older adults hold on to literacy practices. The individuals presented in this study are but a glimpse into answers to those questions. They have shown us a path, more than a set of answers. They’ve demonstrated that what the field of literacy studies has done up to this point is powerful and important, but that we need to consider literacies across the entire life course with more attention to people’s own understandings of what aging and literacy looks like.

My interviews and the data I have provided in this article are limited in what they can tell us about how literacies change over time. But they have opened a door to continued study of the other end of the continuum of literate lives. Clearly, more work needs to be done in exploring the ways our physical bodies are tied to literacy. We need richer and more nuanced studies of older adults’ literacies and lives to offer the kind of textured understanding sociocultural literacy studies has developed over the last thirty years. Further, we need studies that showcase “failures” in literacy usage, studies that move away from being bound to notions of achievement and toward new understandings of “success” as determined by people and not ideologies. The reality is that we all age. Whereas other sociocultural studies of literacy highlight various communities’ and individuals’ unique literacy practices, studies of older adults’ literacies show, in some sense, a more universal aspect of literate lives across cultural boundaries. The act of holding on to literacy illustrates a path we all might follow.