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Age Studies and Disability Studies 

Age Studies and Disability Studies
Chapter:
Age Studies and Disability Studies
Author(s):

Erin Gentry Lamb

, and Rebecca Garden

DOI:
10.1093/med/9780190918514.003.0010
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date: 01 April 2020

Learning Objectives

After reading this chapter, readers will be able to:

  1. 1. Understand the embodied conditions of age and disability as identity categories, and ageism and ableism as forms of prejudice related to these identity categories.

  2. 2. Analyze cultural representations of old age and disability through inquiry into narrative forms and identities.

  3. 3. Adopt a social model approach to identify structural obstacles that limit options for old and disabled people.

Introduction

Because of the ways our bodies change over time and react to our environment, age and disability are particularly fluid identity categories. If we live a full life expectancy, we will experience many age identities along the way, including young, middle-aged, and old. Most of us will experience disability—whether permanent or temporary—throughout the life course. Given this fluidity, stereotyping, prejudice, and discrimination against individuals or groups based on their age or ability status—that is ageism or ableism—affect virtually everyone at some point in their lives. Ageism and ableism may be experienced through others’ prejudicial attitudes, through discriminatory practices, or through institutional policies or customs that perpetuate such attitudes and practices. Age studies and disability studies explore the meanings and consequences of embodied differences—of age and/or disability—within society, with the goal of understanding the mechanisms of and reducing experiences of ageism and/or ableism.

Ageism is grounded in the idea that one’s age can be used as a proxy determination of other qualities, such as competence, capability, or attitude. Gerontologist Robert Butler first coined the term “ageism” in 1969, to refer to prejudice and discrimination against seniors. Other age theorists show that ageism may be directed at people who are middle-aged (see Morganroth Gullette 1997) or young (see Bratt et al. 2018). Ageism is among the “most socially condoned, institutionalized forms of prejudice in the world” (Nelson 2002, ix). It is often highly internalized by those on the receiving end of the prejudice to the point where age-denying comments (e.g., “You can’t possibly be a grandmother!”) can be both offered and received as compliments.

Ableism is a concept that calls into question the assumption that all bodies and minds function in the same “normal” way. In the words of disability researcher Fiona Kumari Campbell (2015), ableism refers to the “ideology of a healthy body, a normal mind, appropriate speed of thought, and acceptable expressions of emotion” that reinforce an impossible ideal of normality. This ideology creates two categories of people: those who are normal and “the aberrant, unthinkable, underdeveloped, and therefore not really human” (13). People of all ages and forms of embodiment are affected by this ideal of bodily—including mental and emotional—function that demeans and diminishes anything outside of that ideal. Philosopher Licia Carlson (2001) uses the term “cognitive ableism” to identify norms of cognitive function that disparage and stigmatize mental and emotional capacities that do not meet those norms. Many of us are excluded by these norms. For example, data show that one in four people in the United States identify as having some disability (Okoro et al. 2018). The fact that disability is rarely included in discussions of minority issues such as discrimination, disparities, and privilege suggests how pervasive ableism is in society.

Age studies and disability studies have developed in recent decades as a way of addressing ageism and ableism. Scholars in fields such as psychology, sociology, history, literature, and philosophy identify as age studies and/or disability studies scholars; they use diverse methodologies—including many of the methods represented in this textbook—to identify social norms and conditions that stigmatize and devalue specific embodiments rather than valuing them as aspects of a broad, complex realm of human variation. Through a better understanding of how age and disability are often reduced to stereotypes and stigmatized, one can recognize and address the disparities that ageism and ableism create and thus improve the lived experiences of those who are old and disabled.

While age studies and disability studies are distinct fields, they are useful to explore in tandem because old age and disability are frequently experienced concurrently and because the fields share many strategies. These fields of study may investigate prevalent perceptions (and misperceptions) of age and disability (e.g., through master narratives, defined in a later section), how those ideas were formed (historically, via popular culture, through professional discourses), how those ideas affect the lived experiences of old/disabled people (through perceptions, social practices, policies, and built environments), and how to promote new understandings and build knowledge and expertise related to age and disability. These fields aim to reduce ageism and ableism by creating opportunities and strategies for access and inclusion and for valuing difference.

The term intersectionality describes the combined effects of different forms of discrimination (such as racism and sexism). Being old and disabled is distinct from being only one or the other, just as one’s experience of aging or disability is affected by one’s race, gender, class, and other key markers of identity. Intersectionality reminds us to avoid generalizing about any identity-based experience. Intersectional identity is greater than the sum of its parts. Intersectional analyses are thus essential if we want to speak to, and improve, the marginalized experiences of the disabled elderly.

This chapter provides some fundamental strategies for analyzing a popular representation of old age and/or disability. The strategies we illustrate are not limited to popular culture; they can be applied to texts as diverse as personal interviews, the discourse of healthcare, or the use of physical space within buildings. To illustrate these strategies, we will focus on two graphic memoirs (see Chapter 5 on Comics) featuring an adult daughter caretaker of older parents who experience increasing disability and dementia. New Yorker cartoonist Roz Chast’s memoir Can’t We Talk About Something More Pleasant? [CWTASMP] (2014) was a National Book Award Finalist and was selected by The New York Times Book Review as one of the 10 best books of 2014. Underground comix cartoonist Joyce Farmer’s Special Exits (2014) was first published in 2010 and released under new cover in 2014 to much less critical attention than CWTASMP. Examined from age studies and disability studies perspectives, however, Chast’s graphic memoir largely echoes the tragic narratives our culture too often tells about growing old and experiencing disability. Special Exits, on the other hand, offers a counternarrative that questions normative conceptions of older age and good quality of life and values the qualities that might otherwise be associated with decline or suffering. An aging or disability counternarrative resists stereotypes and stigmatizing master narratives and helps to rewrite the stories we tell about older age and disability.

Overview of Age Studies and Disability Studies in Health Humanities

Historically, the discourse of healthcare has been a significant contributor to ageism and ableism due to its representations of aging past youth as degenerative, often associated with disease, and by framing disability as disease, disorder, or pathology. While not all older and disabled people require healthcare, many do, and healthcare often medicalizes and stigmatizes what they experience as human variation and changes due to the life course. While there is certainly room within healthcare and biotechnology to separate the process of aging from pathology and to recognize disability as difference instead of deficit, healthcare profits from its investments in anti-aging medicine, rehabilitation, and new technologies to eliminate disability. This problematic relationship with the healthcare field provides fertile ground for age studies and disability studies researchers within health humanities.

Age Studies and Disability Studies as Research Methods

The representations we encounter of aging and disability—the images and stories that describe what it is like to experience either of these conditions—can shape perceptions of those who are old or disabled or how people regard their own embodiment or future age/ability status. As one scholar puts it, “representation structures rather than reflects reality” (Garland-Thomson 2005, 523). These representations also influence our society’s willingness and ability to support, enable, and include, or to continue to segregate, undermine, and exclude older and disabled people.

Comprehending these mechanisms is especially important as life-long exposure has often affected our understanding of these conditions without our being cognizant of it. As age critic Margaret Morganroth Gullette writes in a statement which could equally apply to disability: “The meanings of age and aging are conveyed in large part through the moral and psychological implications of the narrative ideas we have been inserting into our heads, starting when we were very young indeed” (2004, 11). For example, how might it shape our views of age and gender that the majority of old women in classic Disney films are villains? Or, that disabled characters are very rarely featured and are never the heroes or heroines?

The purpose of an age studies/disability studies reading is to help to reframe aging and disability through understandings of culture, politics, and history, rather than as categories of pathology or subjects of medical study and practice. The goal is nothing less than social change: shifts in attitudes, policies, and practices that lead to greater social support for older and disabled people, whether through more accessible designs of environments, adaptive technologies and assistive devices, or social services. The method described in this chapter begins that process by identifying bias and prejudice in representations, as well as locating social practices in need of transformation or examples of best practices. We suggest there are several initial steps one should take in analyzing a representation of age and/or disability, including:

  1. 1. Closely read the representation with attention to the role of age and/or disability

    1. a. Substitute to discern age-based assumptions

    2. b. Identify “narrative prosthesis”

    3. c. Recognize stereotypes

  2. 2. Explore master narratives and counternarratives

    1. a. Decline versus progress narratives

    2. b. Tragedy versus adaptation narratives

    3. c. Independence versus interdependence

  3. 3. Consider structural forces: The social model

  4. 4. Make an interpretive claim

Step 1. Closely Read the Representation with Attention to the Role of Age and/or Disability

The first step is to generate initial impressions about how age and/or disability are portrayed in a chosen text. Begin by closely reading the representation multiple times, picking up repeated words or phrases (see Chapter 1), identifying metaphors (see Chapter 2), noticing formal visual composition (see Chapter 6), and identifying social issues, recurrent topics, emerging themes, and elements of toxic and/or reconstructive narratives (see later discussion).

Substitute to Discern Age-Based Assumptions

One reading strategy that works particularly well with age is a thought experiment wherein you replace an older character with someone of a different age. What changes? What elements of the text now stand out or do not make sense as they did before? This act of substitution can help us to identify our unconscious assumptions and biases in relation to old people. Both Special Exits and CWTASMP feature characters—older married couples, cared for by their adult daughters—who are old and who are experiencing increasing physical and cognitive disability. If we substitute a younger couple for the older couple, it becomes apparent that both texts explicitly anticipate the deaths of these characters. Where there is clear and progressive disease—such as Lars’s lung cancer in Special Exits—that anticipation still makes sense. In the case of nonspecified dementia, such as experienced by Lars’s wife Rachel in Special Exits or George in CWTASMP, a younger version of these characters might lead to different assumptions. Instead of anticipating inevitable and continuous decline, we might alternatively assume that their cognitive disability is in a steady state. Another example in CWTASMP is to consider Elizabeth’s chronic diverticulitis—a condition involving inflammation or infection of small pouches that develop along the walls of the intestines—instead happening to a woman in her 40s. If she were that age, readers would notice how little attention is addressed to Elizabeth’s diet, which is one of the key ways of controlling this condition. In short, if the characters were not old, we would likely see more emphasis on medical treatment or adaptive solutions with less focus on (and perhaps passive acceptance of) impending death.

Identify “Narrative Prosthesis”

A foundational approach to analyzing texts involving representations of disability is to identify instances of narrative prosthesis, when disability is symbolic rather than simply one variation on being human. Narrative prosthesis occurs in a text when disability is used as a crutch to prop up the idea of normalcy (Mitchell and Snyder 2001, 224). In these examples, disability acts as a metaphor, standing in for something else and reinforcing the normalcy of more central characters. For example, in the various versions of Peter Pan, we see how Captain Hook’s prosthetic is not simply a fact of his life, but rather signifies that his character is dangerous, evil, and grotesque. It props up the normalcy of the other characters, their innocence, goodness, wholeness, and health. Another example is found in advertisements, videos, and other texts that represent disability as an opportunity for inspiring nondisabled people. Some ads and posters, for example, show children running on prosthetic legs, people with Down syndrome running races, or elite athletes in wheelchairs, with messages to the effect of “if this disabled person can strive to run in a race or play basketball, then you, nondisabled person, have no excuse for laziness.” This kind of narrative prosthesis is often labeled “inspiration porn” by disabled people who are impatient with being relegated to the role of prop in a narrative that revolves around the identity and experience of nondisabled people (Young 2012).

Disability in Special Exits absorbs the time and attention of everyone involved, but it does not prop up the narrative to emphasize the apparent normalcy of the nondisabled characters. In CWTASMP, however, the parents’ disability is represented always and only through the daughter’s perspective to emphasize her predicament as the “normal,” “sane” character. Even when scenes depict her as frustrated, angry, neglectful, or even irrational, her parents’ disability makes the daughter seem more human and thus a more likeable character, despite her flaws, given that the flaws are represented as understandable responses to her parents’ disability. Roz Chast’s real parents had real issues involving age and disability, but in the narrative Chast creates, disability works prosthetically to prop up the nondisabled character: to reveal the stress and confusion she experiences and to enable the reader’s empathy for her. The narrative does not create similar insight into her parents’ psyches or empathy for their experiences.

Recognize Stereotypes

We often see old or disabled characters represented in similar ways across multiple texts, reinforcing common stereotypes. Psychological research suggests that old people and disabled people are typically perceived as warm (good-natured, friendly) but incompetent (helpless, dependent) (Cuddy and Fiske 2002). Stereotypes may be gendered, with old men portrayed as grumpy and set in their ways or lecherous, and old women as sweet and grandmotherly or as crones (Walz 2002). Stereotypes of disabled people are often extreme: they are threatening and menacing (like Captain Hook) or objects of pity (like Dickens’s Tiny Tim). Whether positive (“old people are wise”; “blind people have super powers of perception”) or negative (“old people are senile”; “disabled people are bitter”), stereotypes lead to assumptions about individuals who belong to a larger group (“old” or “disabled”).

Stereotypes “structure reality” when they influence interpersonal interactions or affect policies that affect the group—such as policies around intimacy in nursing homes or access to mental health treatment. One way to identify stereotypes is to ask: Is a character—or characterization—reduced to a single quality or “type”? Would an actual person acting outside of the “type” cause discomfort because she or he is defying the stereotype? CWTASMP provides an example of stereotyping when Roz takes her parents to visit a long-term care facility and sums it up as “lots of OLD, OLD, OLD, OLD people. Decrepit, hobbled, sad old oldsters. Yep” (100). She is unable to imagine the residents as individual people with histories and interests; they are reduced to their age and their frailty and assumed to be unhappy.

Step 2. Explore Master Narratives and Counternarratives

Stories are one of the foundational ways that we make meaning in our lives. Our memories and ideas about ourselves, our families and circles of friends and support, our communities, and our identities are represented through stories we tell. Similarly, groups, cultures, and even nations tell their own narratives. Narratives that are accepted as the truth, as descriptions of reality (even when they are not), and that shape the norms and customs that impact our lives are called master narratives. Toni Morrison explains that “the master narrative is whatever ideological script that is being imposed by the people in authority on everybody else. The master fiction” (Morrison 1990). As the term master implies, master narratives are constructed and disseminated by those who hold power. Master narratives erase, diminish, and further marginalize those who are not powerful and privileged. They perpetuate stereotypes. However, those who are marginalized by master narratives can respond with counternarratives.

Disability bioethicist Jackie Leach Scully sees counternarratives as one tool for combatting ableism and empowering disabled people. Recognizing the way that stereotypes and toxic narratives about disability can damage identities, she looks for narratives that contain “some form of discursive resistance that rejects oppressive identity and demands respect” (Scully 2008, 114). These can include “counterstories” that shift perceptions and “reconstructive narratives” that “identify those bits of the master narrative that are false, misleading, overgeneralized, or entirely absent” (115). These narratives “retell the story in a way that recovers the features that the prevailing narrative denies, and that show people as moral agents worthy of respect” (115).

In order to recognize counternarratives, you must look for stories that allow for difference and diversity by disrupting narratives that reinforce consensus. Counternarratives unsettle the assumptions that are reinforced by master narratives; they allow for atypical identities and often give words—and thus meaning—to identities that had been effectively invisible and silent in the master narrative. For Scully, disability counternarratives correct misperceptions and stereotypes; allow for difference, complexity, and nuance; and, most importantly, they represent individuals “as moral agents worthy of respect” (2008, 115). In analyzing representations in the two graphic memoirs, then, we seek to identify toxic master narratives and counternarratives.

Decline Versus Progress Narratives

Aging in American culture is most commonly portrayed through a particular type of master narrative that Gullette calls a decline narrative, a metaphor that suggests that aging-beyond-youth leads to inevitable disease, deterioration, and death. While decline may be the master narrative for late life, Gullette argues that progress narratives are the “semiofficial life narrative for children” in America, wherein each new age involves growth, new skills, and the anticipation of more of both ahead (Morganroth Gullette 2004, 17). Presenting aging-into-old-age only as decline forecloses other imaginative possibilities: that old age might be a time of further growth and new knowledge, relationships, and experiences. It may also be an opportunity for a redefinition of the self that brings greater satisfaction with life, for deeper contemplative solitude (which may involve decreasing one’s social interactions in a developmentally appropriate way), for less focus on traditional understandings of time in favor of what one researcher calls “gerotranscendance” (Tornstam 1994).

Age as decline is made visually and verbally explicit throughout CWTASMP. As just one example, a panel titled “Something You Should Know” is presented as a sort of public service announcement. It features images of the same man from age 25 to 99, growing increasingly haggard and hunched, and explains: “Once you pass your physical peak—let’s say 25—the falling-off is incremental. Every year—unless something ‘happens’—you get a little slower, a little saggier, until you hit 90. At that point, things start to fall apart at a much faster rate” (Chast 2014, 103). When people want to figure out how to live to 120, Roz “want[s] to ask them: ARE YOU OUT OF YOUR MIND?” (103). This presentation of the aging process leaves little room to imagine that growing old might still involve new joys or skills, and Chast’s depiction of her parents reiterates this decline narrative. Most of the chapters end with negative changes in her parents’ conditions: a fall, the need to move into a care facility, a death. At one point, Chast draws her mother in a bed smoking a hookah, and writes: “I wish that, at the end of life, when things were truly ‘done,’ there was something to look forward to. Something more pleasure-oriented. Perhaps opium, or heroin. So you became addicted. So what? . . . Extreme palliative care, for when you’ve had it with everything else” (164). Chast is unable to see beyond the master narrative of decline and imagine that there might still be pleasures in extreme old age.

Special Exits, by contrast, offers a progress counternarrative. Even after he has entered hospice and death is imminent, Lars pursues his hobby of coin collecting, preparing an “obol,” a Greek coin intended to pay Charon for passage across the underworld river Styx. Along with this preparation for his own death, Lars invents a system of ropes to help him turn over in bed. He has his care provider buy him a new watch. He asks Laura to replace a portrait that has hung on his wall for “fifty-three-point-two percent” of his life with a painting from his “bachelor days” (Farmer 2014, 177). Lars’s narrative, while acknowledging physical decline, is one of self-definition, anticipation, and innovation—of growth and progress—even at the end of life.

Tragedy Versus Adaptation Narratives

Disability studies scholars deconstruct narratives that portray progressive changes in functionality through chronic illness or disability as tragic and the loss of fully normative embodiment as the development of a life that is less worth living, if at all. Many ableist representations of cognitive changes, such as memory loss, reinforce perceptions of disability and/or older age as involving a poor quality of life. In many popular films and novels, as well as in CWTASMP, incontinence, loss of memory, and the need for personal care assistance are seen as turning points or boundary lines, beyond which life has lost its value. For example, Elizabeth, when required to start using a walker, says: “Once you start using one of these, that’s the end” (Chast 2014, 129).

In contrast, Special Exits represents increasing disability as simply requiring adaptation. As Rachel loses mobility, Lars procures a walker and portable commode. Rachel resists: “I feel like it would be the end of the line.” But Lars counsels, “It’s not. It’s an extension of the line” (Farmer 2014, 40, emphasis in the original). Special Exits rarely makes generalizations about the aging process, focusing instead on Lars and Rachel’s unique lived experiences and their unique narrative of adaptation. When Laura learns that her stepmother Rachel has become incontinent and no longer leaves the sofa, Laura’s father tells her: “Yes, OK. She hasn’t tried to walk for a long time. Not since she’s been blind.” Laura asks, “She hasn’t left the sofa for over a year?” Lars responds, “That’s right. She can’t stand up at all anymore” (85). Rather than expressing horror at this development, Laura observes this change matter-of-factly: “When you’re blind, you would need a good sense of balance just to stand.” Lars says, “So now I give her a towel. She uses it, you know . . . and I put it in the wash.” When Laura suggests diapers, Lars replies, “Eh, she doesn’t want to admit the problem. Besides . . . The diapers from the store have a plastic cover that would encourage a rash. She no longer knows if she’s wet or dry.” Lars’s approach could be interpreted as denying Rachel’s decline (as it might be in CWTASMP), but Farmer presents it as a rational adaptation. When Laura asks about “the other” bodily function, Lars replies, “The washing machine doesn’t care. I just put those towels through twice!” Laura is portrayed clutching a duster, her face expressing dismay or surprise, an understandable response given that she has not had the opportunity to adapt to Lars’s strategies for managing Rachel’s functional changes. Lars’s acceptance of the changes is represented by his slight smile. In the scene’s final panel, Laura protests, exclaiming “Dad!” but he smiles broadly: “Yes, well—things get worse in such small increments that you can get used to anything.”

While not denying the difficulties of physical decline, Lars’s response invites viewers to recognize that many age-related changes are gradual, and the embodied experience of aging is not one of falling off of a moving sidewalk, as it is pictured in CWTASMP (Chast 2014, 10), but of adapting to changing circumstances—something we practice at all stages of the life course. Disability studies offers ways of thinking about adaptation and time itself that improve the quality of lives with disability. Over time, one is able to adapt to situations arising from changes in embodiment. Over time, Laura is no longer horrified by Rachel’s immobility and incontinence and changes Rachel’s towels as part of her routine care. Disability studies rejects ableist representations of disability and death as failure and helps us to see the potential for a good quality of life through “crip futurity,” images of a life course in which developing disability and age are met with adaptation and care rather than fear and dismay (Kaefer 2013, 27). This critical paradigm helps us to experience disability and aging radically differently.

Independence Versus Interdependence

Another significant disability studies paradigm is “interdependence,” which helps us to develop counternarratives of aging and disability in which personal assistance does not represent a poor quality of life. Many nondisabled people pride themselves on self-sufficiency and independence. The American cultural identity is founded on the notion of “rugged individualism,” and “becoming a burden” to one’s children is a key concern, a fear which centers around caregiving needs, not financial dependency (Pew Research Center 2009, 80–81). This terror of dependence is encouraged by media portrayals of dementia that direct our sympathies to the caregiver, to the point where “fantasies of euthanasia and preemptive suicide” are romanticized in films like Amour (Haneke 2012) or Still Alice (Glatzer and Westmoreland 2014; Morganroth Gullette 2017).

Yet most of us are dependent on technology, assistive devices, and the labor of others in unacknowledged ways, such as technologies used for managing schedules and data, expectations of transportation for distances considered too far to walk and for services to deliver heavy purchases, or support for tasks beyond cognitive or physical means such as tutoring and home repairs. Furthermore, disabled and older people who require additional assistance can have the same good quality of life as nondisabled people. Research suggests, in fact, that disabled and older people generally report higher levels of life satisfaction than nondisabled and younger people assume they have or report themselves (Albrecht and Devlieger 1999; Carstensen et al. 2000). Disability studies pushes us to think beyond individual autonomy and independence to understand how agency, personhood, a good quality of life, and dignity are attainable through interdependence.

Special Exits and CWTASMP juxtapose representations of interdependence. Laura enters her parents’ world with empathy, attentive to their adaptations and careful to work collaboratively with them despite her initial reluctance. Much of CWTASMP’s humor derives from the clash between daughter and parents, and Roz confronts rather than collaborates with her parents and their adaptations.

Step 3. Consider Structural Forces: The Social Model

Disability studies shifts our thinking from the individual to the social. We may think of aging and disability occurring solely within the bodies and minds of individuals, but individual experiences are also shaped by social forces and cultural narratives that mold expectations and perceptions. This shift in perception from the individual to society is key to the social model of disability. Rather than seeing disability as an individual problem to be addressed through medical treatment or through individuals’ grit and ingenuity, the social model focuses on systemic barriers: wheelchair users are disabled when buildings lack ramps or elevators, deaf people are disabled by videos without captions, and blind people are disabled by images without visual descriptions. The social model recognizes how the “problems” of disability are located in society—not in individuals—and that the solution is to redesign our environments to accommodate variously-abled bodies and minds. Disabling structural frameworks range from the built environment to the sensory environment to policies that shape social practices. Age studies scholars, too, resist medicalizing aging as “disease,” a process of individual decline in need of being arrested or reversed (a perception that benefits the multibillion dollar anti-aging medicine and consumer markets). They instead focus on how we are “aged by culture” (Morganroth Gullette 2004) and critique the policies and systems (such as retirement and Medicare) that limit options for older people.

In Special Exits, Lars, Rachel, and Laura can modify their lives and habits to adapt to profound changes in their bodily and cognitive functions while in their home. However, when Rachel is placed in a nursing home, policies, regulations, and the need for profit and efficiency govern her “care.” Rachel loses her autonomy and Lars and Laura’s attentive care, resulting in bedsores, a broken hip, malnutrition, and then death. Special Exits makes clear that Rachel’s decline was not inevitable but rather the result of neglect and poor institutional care.

Chast’s memoir also forcefully critiques the institutions and policies that shape elder care, namely long-term care facilities and insurance. Chast provides a detailed breakdown of the excessive costs of “the Place”—an assisted-living facility to which her parents move: “We were blowing through my parents’ scrimpings at breakneck speed: about $14,000 a month, none of which was covered by insurance” (2014, 174). Chast’s memoir reveals the disabling structure of long-term care in the United States, wherein Medicare—federal insurance for those 65 and older—does not typically cover personal assistance (which enables people to age in place or move to assisted living) nor extended stays in skilled nursing facilities such as nursing homes. Through Chast’s repeated anxieties about affording her parents’ care, her memoir shows readers how limited and undesirable the institutional and insurance opportunities are for those who need long-term care.

Step 4. Make an Interpretive Claim

The next step is to pull together all of the observations you have made and consider the text as a whole. What is problematic, and what is exemplary, in the representations of aging and/or disability that it provides? Make a claim. Both of the graphic memoirs we have explored address topics—illness and disability in old age, and elder care—that are often deemed too negative to be addressed by popular culture (witness Chast’s title: Can’t We Talk About Something More Pleasant?). These texts’ representations of aging and disability can influence those who read them. We argue that Chast’s memoir reinforces a toxic, tragic decline narrative in which growing old and disabled involves inevitable misery and caregiver burden. Special Exits instead offers a counternarrative that resists tragic interpretations of changes in ability, adaptation, and adoption of assistive devices by presenting opportunities for continued growth concurrent with increased age/disability. Both texts speak valuably to the complexities of family relationships which affect caregiving, and Chast’s troubled relationship with her parents (especially her mother) creates a very different situation than that faced by Laura in Special Exits. When Chast’s widely read memoir is hailed as “utterly true” by the Washington Post and “extraordinarily honest” by the San Francisco Chronicle (Bloomsbury 2018), we see how the memoir may broadly reinforce problematic master narratives about aging and disability. Memoir and fiction can offer ways to imaginatively explore the possibilities of being other, rather than replicating the limited narratives that already circulate about aging and disability.

An interpretation like this is the initial goal of the analytical process we have described, but you will want to share your research with others in the interest of effecting social change: shifts in attitudes, policies, and practices. While many age studies and disability studies scholars speak to academic audiences via specialized journals, the analyses we produce are perhaps most important for the audiences of the texts we analyze (in our case, the general reading public). Newspapers like the New York Times have special sections focused on disability and aging (see this chapter’s Resources section), and there are many blogging platforms open to publishing well-written critiques, such as medium.com. Simply communicating what you have learned from your research to family, friends, and colleagues is a way to work through informal, “local knowledge” to effect change.

The Limits of Age Studies and Disability Studies

We have been presenting age studies and disability studies as a uniform endeavor. However, people who want to make more positive claims about life in old age or with disability may purposefully distance themselves from the other field. For example, the model of “successful aging” posed in the late 1980s by gerontologists John W. Rowe and Robert L. Kahn describes aging “successfully” as the “avoidance of disease and disability” (Holstein and Minkler 2003, 789). Similarly, many discussions of disability simply ignore aging and insist on the value of a life lived with a disability by rejecting associations with illness and disease. Susan Wendell identifies how some disability studies scholarship privileges a “healthy disabled” ideal, disregarding people with chronic illness (Wendell 2001) and, we argue, aging and dementia as well. As advocates reject the stigmatization of terms like “old” or “disabled” or needing medical care, they may champion one condition by further stigmatizing the other. Thus, political agendas may conflict when age studies and disability studies work in tandem.

Summary

Age studies and disability studies are health humanities methodologies that identify ageism and ableism in culture in order to reimagine and value lives lived with disability and aging. Like studies related to other marginalized identities and embodiments, these approaches identify stigmatizing and dehumanizing stereotypes and narratives. Through a systematic analysis of toxic representations, one can reveal how cultural artifacts, such as films and popular texts, might reinforce negative and limiting assumptions. Age studies and disability studies can also identify counternarratives that function as resources for sharing information, strategies for adaptation, or models of liberation. Finally, by exploring how social forces shape disability and aging, health humanities research can be a means of social change, perhaps even transformation. Whether as a tool for developing social programs or adaptive strategies, addressing societal barriers, educating about stigma, or simply to develop greater respect and deeper value for people who are old and disabled, this approach engages in critical analysis as a form of advocacy and even healing.

Sample Exercises

  1. 1. Pick a Disney or other children’s movie that has at least one old or disabled character. Create a list of words describing the character. Consider the character’s role in the story (Protagonist? Antagonist? Helper? Sidekick?). How does the character embody or contradict stereotypes of old age/disability? Is the character reduced to supporting the “normal” characters (through “narrative prosthesis”)? Would the character still serve the story without being old/disabled? What is the function of the character’s old age and/or disability in creating the meaning or “message” of the film?

  2. 2. Watch the film Still Alice (Glatzer and Westmoreland 2014) about the fictional character Dr. Alice Howland, a famous linguistics professor at an Ivy League school who is diagnosed with early-onset Alzheimer’s disease. Produce a close reading of the role that age and disability play in the text by working through the following steps:

    1. a. Begin with a thought experiment where you imagine Alice is in her late 70s instead of her early 50s. How might that age difference change Alice’s reaction or that of her family and friends? What elements of progress narratives or decline narratives can you identify in the film?

    2. b. What narratives of tragedy and/or of adaptation do you see in the film? How does the film portray the relationship between cognitive disability and typical physical ability?

Resources

Disability Studies

Keywords in Disability Studies. 2015. Edited by Rachel Adams, Benjamin Reiss, David Serlin. New York: New York University Press.Find this resource:

New York Times. The newspaper has a series of essays, art, and opinion pieces by and about people with disabilities. https://www.nytimes.com/column/disability. Accessed May 1, 2019.

Narrative and Disability (Master Narratives and Counternarratives)

Scully, Jackie Leach. 2008. “Narratives of Disability: Models and Mentors.” In Disability Bioethics: Moral Bodies, Moral Difference, 107–131. Lanham, MD: Rowman and Littlefield.Find this resource:

Disability Reduced to Inspiration for the Benefit of Nondisabled People

Young, Stella. 2014. “Inspiration Porn and the Objectification of Disability.” Filmed April 2014 at TEDxSydney, Bennelong Point, Sydney. Video, 9:27. https://tedxsydney.com/talk/inspiration-porn-and-the-objectification-of-disability-stella-young/. Accessed May 1, 2019.

Age Studies

Age, Culture, Humanities: An Interdisciplinary Journal. Particularly, the manifestos section from issue 1.1 and the forum on Age and/as Disability Studies in issue 2.1. http://ageculturehumanities.org/WP/. Accessed May 1, 2019.

North American Network in Aging Studies (NANAS). Recommended readings. http://agingstudies.org/NANAS/?page_id=33 (Accessed May 1, 2019).

Ageism in Popular Culture

Old School: A Clearing House for All Things Anti-Ageism. https://www.oldschool.info/. Accessed May 1, 2019.

Silver Century Foundation Blog. http://www.silvercentury.org/voicesviews/blog/. Accessed May 1, 2019.

References

Albrecht, Gary L., and Patrick J. Devlieger. 1999. “The Disability Paradox: High Quality of Life against All Odds.” Social Science and Medicine 48 (8):977–988. https://doi.org/10.1016/S0277-9536(98)00411-0.Find this resource:

Bratt, Christopher, Dominic Abrams, Hannah J. Swif, Christin-Melanie Vauclair, and Sibila Marques. 2018. “Perceived Age Discrimination Across Age in Europe: From an Ageing Society to a Society for All Ages.” Developmental Psychology 54 (1):167–180. https://doi.org/10.1037/dev0000398.Find this resource:

Butler, Robert N. 1969. “Age-ism: Another Form of Bigotry.” The Gerontologist 9 (4, Part 1):243–246. https://doi.org/10.1093/geront/9.4_Part_1.243.Find this resource:

Campbell, Fiona Kumari. 2015. “Ability.” In Keywords for Disability Studies, edited by Rachel Adams, Benjamin Reiss, and David Serlin, 12–14. New York: NYU Press. https://discovery.dundee.ac.uk/en/persons/fiona-kumari-campbellFind this resource:

Carlson, Licia. 2001. “Cognitive Ableism and Disability Studies: Feminist Reflections on the History of Mental Retardation.” Hypatia 16 (4):124–146. https://doi.org/10.2979/HYP.2001.16.4.124.Find this resource:

Carstensen, Laura L., Monisha Pasupathi, Ulrich Mayr, and John R. Nesselroade. 2000. “Emotional Experience in Everyday Life Across the Adult Life Span.” Journal of Personality and Social Psychology 79 (4):644–655. https://dx.doi.org/10.1037/0022-3514.79.4.644.Find this resource:

Chast, Roz. 2014. Can’t We Talk About Something More Pleasant?: A Memoir. New York: Bloomsbury.Find this resource:

Cuddy, Amy J. C., and Susan T. Fiske. 2002. “Doddering but Dear: Process, Content, and Function in Stereotyping of Older Persons.” In Ageism: Stereotyping and Prejudice Against Older Persons, edited by Todd D. Nelson, 3–26. Cambridge, MA: MIT Press.Find this resource:

Farmer, Joyce. 2014. Special Exits. Seattle: Fantagraphics Books.Find this resource:

Garland-Thomson, Rosemarie. 2005. “Disability and Representation.” PMLA 120 (2):522–527. https://www.jstor.org/stable/25486178.Find this resource:

Glatzer, Richard, and Wash Westmoreland. 2014. Still Alice [film]. Sony Pictures Home Entertainment.Find this resource:

Gullette, Margaret Morganroth. 1997. Declining to Decline: Cultural Combat and the Politics of the Midlife, Age Studies. Charlottesville: University of Virginia Press.Find this resource:

Gullette, Margaret Morganroth. 2004. Aged by Culture. Chicago: University of Chicago Press.Find this resource:

Gullette, Margaret Morganroth. 2017. Ending Ageism, or How Not to Shoot Old People. New Brunswick, NJ: Rutgers University Press.Find this resource:

Haneke, Michael. 2012. Amour [film]. Sony Pictures Home Entertainment.Find this resource:

Holstein, Martha B., and Meredith Minkler. 2003. “Self, Society and the ‘New Gerontology.’” The Gerontologist 43 (6):787–796. https://doi.org/10.1093/geront/43.6.787.Find this resource:

Kaefer, Alison. 2013. Feminist, Queer, Crip. Bloomington: Indiana University Press.Find this resource:

Mitchell, David T., and Sharon L. Snyder. 2001. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann Arbor: University of Michigan Press.Find this resource:

Morrison, Toni. 1990. Toni Morrison on Love and Writing (Part One). In A World of Ideas with Bill Moyers [broadcast], edited by Bill Moyers: PBS.Find this resource:

Nelson, Todd D., ed. 2002. Ageism: Stereotyping and Prejudice against Older Persons. Cambridge, MA: MIT Press.Find this resource:

Okoro, C. A., N. D. Hollis, A. C. Cyrus, and S. Griffin-Blake. 2018. “Prevalence of Disabilities and Healthcare Access by Disability Status and Type Among Adults—United States, 2016.” CDC, Morbidity and Mortality Weekly Report 67:882–887. https://doi.org/10.15585/mmwr.mm6732a3.Find this resource:

Pew Research Center. Growing Old in America: Expectations vs. Reality. Washington, DC, 2009. https://www.pewresearch.org/wp-content/uploads/sites/3/2010/10/Getting-Old-in-America.pdf. Accessed May 1, 2019.

Scully, Jackie Leach. 2008. “Narratives of Disability: Models and Mentors.” In Disability Bioethics: Moral Bodies, Moral Difference, 107–131. Lanham, MD: Rowman and Littlefield.Find this resource:

Tornstam, Lars. 1994. “Gerotranscendence: A Theoretical and Empirical Exploration.” In Aging and the Religious Dimension, edited by L. E. Thomas and S. A. Eisenhadler, 203–225. Westport, CT: Greenwood Publishing Group.Find this resource:

Walz, Thomas. 2002. “Crones, Dirty Old Men, Sexy Seniors: Representations of the Sexuality of Older Persons.” Journal of Aging and Identity 7 (2):99–112. https://dx.doi.org/10.1023/A:1015487101438.Find this resource:

Wendell, Susan. 2001. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia 16 (4):17–33. https://doi.org/10.1111/j.1527-2001.2001.tb00751.x.Find this resource:

Young, Stella. 2012. “We’re Not Here for Your Inspiration.” The Drum. http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm. Accessed November 17, 2018.