Altering the Narratives We Are Told to Benefit Caregivers and the Work They Perform

Abstract:

The stories we tell inform and engender narratives, which in turn shape culture and ultimately determine how we perceive the world and our place in it. Stories also have the power to connect us to one another through shared experiences and mutual empathy. Yet caregivers and care are often invisible or in the background of stories, especially in pop culture storytelling, which has the biggest imprint on the formation of narratives. What are the stories we need to be telling and has the pandemic created an opportunity for new stories about care and caregivers?

Key Words:

caregiver, narrative, pop culture, television, narrative change, culture change, aging

In 2019, Caring Across Generations held focus groups in which caregiving families were asked, among other questions, about the ways in which a comprehensive program of care supports and infrastructure might benefit them. Families shared caregiving experiences and highs and lows of their day-to-day lives, and spoke of difficulties caring for loved ones while maintaining careers and earning enough to support their families.

Out of the insights people shared, one through line surprised the Caring Across team: when asked if they wanted additional support, families said yes. But, upon deeper probing it became clear to interviewers that most people didn’t expect their situation to change, because they didn’t feel as if they deserved any better. They assumed caring for loved ones was an individual or familial responsibility, and if they weren’t able to do so, it was a failing on their part rather than a lack of equitable and just care infrastructure.

We All Swim in Narrative Oceans

In addition to being heartbreaking to witness, this insight reinforced something Caring Across Generations has known for some time: in addition to the “facts” that help us to understand our world, we swim in “narrative oceans” that influence how we define ourselves, make meaning of, and determine our value, even though we may not realize it. Like water to a fish, narrative oceans feel like reality, immersing us in a constant swirl of ideas, stories, and behavioral norms that take root in our imaginations. Pop culture—films, TV shows, plays, books, video games, sporting events, political speeches, and other experiences millions of people engage in every day—is a primary driver of this immersion.

Religious and mythological tales, as well as the metaphors and stories we hear from our parents, grandparents, teachers, colleagues, peers, and role models, constantly reinforce the big ideas generated by mass culture. Swimming in these cultural waters from a young age, we encounter all sorts of narrative archetypes—stories that “recur in a culture over time that people widely recognize and understand, and to which they have a predictable response” (Senser, 2021).

Over time, these narrative archetypes shape our beliefs and attitudes, define cultural norms, and provide “a foundational framework for understanding both history and current events, and inform our basic concepts of identity, community and belonging” (Narrative Initiative, 2019).

The focus group respondents were unconsciously referencing the American narrative archetype of rugged individualism that places the onus of success—including the safety, health, security, and dignity of themselves and their families—solely upon the individual. This narrative archetype, ubiquitous across cultural stories from religious myths to cult classic movies, has normalized the idea that caring for ourselves, our elders, and our loved ones with chronic illnesses and disabilities is the responsibility of individuals (or families, at most) rather than a collective, social responsibility, which would warrant a public infrastructure solution.

From the early days of Caring Across Generations, this pervasive narrative has emerged as one of the biggest barriers the care movement needs to overcome. So while many cultural groups practice the idea of community care in their neighborhoods or extended families, this isn’t the default norm of how care is perceived in the United States. One would be hard-pressed to find examples of pop culture stories that illustrate care as a collective responsibility.

Additional Drivers Causing Care to Remain Unseen

In addition to the dominant narrative of individualism, other norms and narratives have caused care to be invisible and undervalued in American culture. Digging into the language used to describe caregiving and care work in media and pop culture (“house work,” “help”) reveals that social norms rooted in a sexist and racist history are responsible for the devaluing of caregiving and the lack of infrastructure to support the care needs of families across the generations. Caregiving has traditionally been associated with women’s work in the home, and primarily associated with women of color, black women and immigrant women, rendering it invisible and deeply undervalued (OECD Development Center, 2014).

These historically entrenched attitudes, norms, and beliefs prevent us from treating care as a social and political priority. To build a demand and a pathway for long-term change, we must shift these norms and narratives around caregiving. Only then can we create the cultural conditions necessary to ensure that everyone has the resources and supports they need to care for their loved ones and live, work, and age with dignity.

Caring Across Generations’ theory of change is built on the idea that there are two types of truths, one factually true and one emotionally true, and to achieve our goals we need strategies that appeal to and shift both ways of making meaning and acting in the world. While it is critical to transform policy and laws, the care movement also needs to transform narratives that influence how we feel about things, how we make meaning, and, most importantly, how we can shape our ability to imagine the caring culture we want to build.

When we talk about social change requiring deep systemic shifts, this includes transforming the dominant narratives that help us define ourselves, our place in the world, our sense of what is just and normal, as well as what we deserve. In fighting harmful and offensive narratives, organizers, advocates, artists, and cultural strategists must create new narratives focused on our values and solutions, and convince people that the solutions contained in them are possible and worth fighting for.

To shift narratives, we must first infuse our culture with the stories we would like to see. But one story rarely shifts the culture at large. We must create new narrative oceans in which thousands of interconnected stories and other narrative experiences emerge across media and pop culture over time. In this way, we can create the depth of narrative immersion needed to inspire people to consider new ideas, new ways of being and relating to one another, and ultimately, new solutions that reflect new societal values around care.

Current Depictions of Care

A quick inventory of the most popular television shows and films over the years will reveal that, at best, caregivers and care storylines are invisible or serve only as background. At worst, the depiction of care is dominated by harmful tropes that position those who receive care as tragic or deficient, families who manage the care of loved ones as lone soldiers in a private fight, and workers who provide care as “helpers” rather than experienced professionals performing an essential job. These troubling narratives are especially prevalent in pop culture storytelling, which has the biggest imprint on the public’s imagination.

A few years ago at a Caring Across Generations convening of caregivers, older adults, and people with disabilities, the culture change team asked attendees to name scripted TV shows that represented caregiving. Within five minutes, they were shouting names of shows like The Golden Girls, Full House, One Day at a Time, and Grace and Frankie. Many of these shows depicted aspects of the care ecosystem, but very few did it well. Attendees noted that while the TV show Full House was funny and had an unusual plotline of three men caring for children, it wasn’t realistic; which Grace and Frankie was hilarious and unusual for featuring two older women as central protagonists, they were wealthy and their care needs were often revealed only as a source of comedy, without any exploration of what solutions might look like.

To cause a critical mass of people to think about care as a collective, social issue that needs solutions at the community and public/government levels, we need thousands of stories in pop culture that prominently feature aging and caregiving, and do so with the same nuance and depth they care in people’s lived experiences.

We need stories that center caregivers and those they care for; stories that highlight the hardships and the joys of caregiving; and stories that celebrate intergenerational relationships. We also need stories that feature care across the generations, as Caring Across Generations produced through its “Throwback Summer” campaign in 2014 that brought Millennial grandkids into collaboration with their grandparents to share stories on social media.

We need stories that include all aspects and combinations of the caregiving ecosystem, including family caregivers, homecare workers, domestic workers, and recipients of care such as older adults and people with disabilities.

Finally, we need these plotlines in the foreground, with multidimensional protagonists illustrating the idea that caregiving is valuable and dignified work (whether performed by a family member or a professional care worker or domestic worker).

Highlighting Realistic Portrayals of Caregiving to Shift Policy

When domestics workers are portrayed in TV and film, they are mostly housekeepers or nannies (very rarely do you see a homecare worker as a central protagonist), and are at most two-dimensional characters referred to by first names only, who serve as minor foils to central protagonists. Think Dorota in Gossip Girl, or Rosario in Will and Grace (although the Will and Grace writers altered the script to include more scenes of Rosario based on feedback from fans of the show who loved the dynamic between her and the Karen character).

The 2018 film Roma, centered on the life of domestic worker Clio, was an exception, illuminating the day-to-day chores of domestic work in beautiful, cinematic detail. Our partners at the National Domestic Workers Alliance ran a powerful social impact campaign that leveraged the film (along with its director and producers), to bring attention to much-needed domestic worker policy change, as well as to empower domestic workers around the country.

In addition to making care across the lifespan visible (caring for children, caring for adults, older adults, and people with disabilities), we also need stories that portray solutions to people’s struggles, and that work in concert with other stories and cultural content to make people realize the portrayed solutions are possible.

For example, how can we catalyze more stories of supportive care squads or care teams? (A care squad or team is a group of people—two or more—caring for someone in their home. A care squad or team could comprise one or multiple family members, a professional care worker, a neighbor, a friend, a community leader. A care team or squad is the practical embodiment of the saying “It takes a village.”

What about examples of collective, community care? We need to see care teams that include characters who receive and provide care at different points in their day (e.g., grandparents who care for their grandchildren but might need care planning and support from their children); care teams and collective care among chosen family members (e.g., from LGBTQIA+ communities); and care teams that include family members, friends, and professional care workers (many of whom are BIPOC and immigrant women, and many of whom are family caregivers as well).

The NBC show This Is Us is a rare example of a primetime TV drama that explores scenarios of caregiving across generations and does so in a way that is realistic, nuanced, deeply moving, and also entertaining. It follows three generations of one family and showcases a sandwich generation caregiver, Randall Pearson, caring for his three daughters, his wife, and his mother, Rebecca, when she is diagnosed with Alzheimer’s. Earlier in the show Randall also cares for his biological father, William, and supports him to die with peace and dignity, surrounded by his newfound family.

Rebecca, who, as mother and grandmother, is a central caregiver protagonist in the show, starts to need care in later seasons, and struggles with accepting it from her husband Miguel or her sons, Kevin and Randall. By the end of the fifth season, Kevin, Randall, and Miguel are navigating their individual emotions and group dynamics and are beginning to form Rebecca’s care squad. If season six continues to build out her care team to include a professional care worker, then This Is Us might just make pop culture caregiving history!

Finally, the Normalizing of Care and Caregiving

In the last decade we have seen an increase in pop culture stories that center older people and their experiences. In 2015, Caring Across Generations partnered with The Moth to hold storytelling workshops and trainings with elders relaying stories about aging as part of a public showcase at the Motion Picture & Television Fund in Hollywood. With the support of expert storytellers at The Moth, people such as octogenarian Beverly Engleman shared their stories about coming to accept and even enjoy a balance of independence and dependence, epitomized by her walker, which she named “Alice Walker.” Engleman’s story was poignant, touching, and hilarious, and held universal appeal.

In recent years, shows like Blackish feature the grandparents as important characters, and a slate of movies like Book Club, Beginners, and the recent Oscar winner, The Father, showcase a range of experiences of older people and their caregivers. If we want to change the systems and structures that support us as we age, we need to see more stories of older adults and their diverse experiences, without ageist tropes, and we certainly need to see stories about people aging at home with their families, as well as more intergenerational relationships portrayed as valuable to everyone.

In 2020 and 2021, Caring Across Generations has partnered closely with the filmmakers of the documentary Duty Free, which highlights ageism and elder economic insecurity through a moving love letter from a son to his mother. When 75-year-old immigrant Rebecca Danigelis is unceremoniously fired from her job of many years as a hotel housekeeper, her son Sian-Pierre Regis decides to crowdfund an adventure designed around her bucket list, and to make a documentary about their trip. The touching and beautifully crafted film explores the value of intergenerational relationships and caregiving, and shines a light on the many ways in which thousands of older Americans are ignored and left behind by the culture, society, and government.

The film has received national acclaim, and Caring Across has been an integral part of its impact campaign, hosting digital conversations about caregiving with its protagonists, as well as using elements of the film’s narrative to point to policy and cultural solutions that could help people like Danigelis retire and age with ease and access to care.

In her bestselling memoir, The Age of Dignity: Preparing for an Elder Boom in a Changing America, Caring Across Generations co-founder Ai-jen Poo says, “In order to achieve a future with dignity, we must achieve a profound cultural shift in how most Americans feel about aging and care . . . Our new stories about care and aging must be told so that many different kinds of people can relate to them on an emotional level. We need more complex, diverse elder characters and caregiving characters. As we depict more older characters and caregivers, we will be able to see the world through their eyes” (Poo, 2015).

Her words reflect what Caring Across Generations has known for years: Stories are powerful. Stories matter. Representation matters, and seeing one’s experience and identity reflected on screen, whether on TV or in our Facebook/Instagram feeds, validates those experiences, and enables people who feel invisible to feel less isolated, more visible, valued, and even powerful. When we immerse audiences in new narrative oceans—replacing problematic stories with transformative ones, or protagonists with those who aren’t usually featured centrally in stories and pop culture (caregivers, for instance), we flip the script, and shift power away from the status quo, envisioning and creating a new culture.

The Pandemic Effect on New Narratives

Creating new narrative oceans that engender new cultural norms takes time. Generations, even. But some events—portal moments—dramatically accelerate the culture change process by shifting atmospheric conditions and creating openings for faster narrative expansion. The COVID-19 pandemic did that for aging and caregiving, creating a tipping point for narratives around care, first in the news media, and then elsewhere.

Of course, this sudden narrative immersion around care was a direct reflection of people’s lived experiences during the pandemic, as people struggled to care for their children, their older and disabled loved ones, and themselves in this new extreme reality of forced isolation and high risk for those who were already vulnerable.

At first, Caring Across’ narrative work focused on amplifying people's stories of lack of access to care, with stories of family caregivers and care workers who were struggling to earn a living, stay safe, and care for their loved ones. Across social media, we shared stories about family caregivers, the direct care workforce, the impact of economic insecurity on families, the pandemic experience of working moms, the vulnerability of older adults in nursing homes . . . and all of these stories drove the same narrative about the need for a care infrastructure that supported everyone. In the news and on social media, there was an intense appetite for these stories, with words like “care” and “caregiver” pushed to the foreground of the narrative zeitgeist.

In addition to the struggles caregiving families faced, the pandemic also brought families together in unexpected ways—college students were suddenly living at home, grandparents had moved into their children’s homes to prevent isolation and enable care, and other families were connecting digitally more than ever before. This showed up on TikTok, where people celebrated their grandparents and intergenerational relationships in their lives. Caring Across, in partnership with the National Domestic Workers Alliance, seeded some challenges on TikTok, thanking caregivers and producing stories and content for digital and social media distribution that leveraged comedy to highlight the experiences of family caregivers and domestic workers.

One set of sketch videos parodied care workers, nannies, house cleaners, and family caregivers trying to care for people over Zoom. Along with providing levity, support, and a sense of community to caregivers and care workers during the pandemic, the stories added oxygen into the narrative environment, building narrative power for central protagonists and the issue, and most importantly, directing the conversation toward ideas of community care and public solutions to the care crisis.

By the winter of 2020, it was clear the pandemic had created new narrative oceans in which the experiences of elders, people with disabilities, and their caregivers commanded more space. Caring Across’ work for 2021 has been to fill these oceans with stories cementing the idea that care is universal, essential, and valuable, and that we need to celebrate, honor, and demand the care that families across the United States deserve. The Caring Across team leaned into this moment, producing and sparking complex storytelling across platforms using art, photography, and live events, and will continue to do so throughout this year and the next.

These storytelling experiments not only diversify how Caring Across tells stories, but also who we feature. In February 2021, Caring Across collaborated with Justin Baldoni, his brand Man Enough, and his production company Wayfarer Studios to produce a five-episode video series called Man Enough to Care, highlighting male-identifying people who are caring for someone they love (a child, a parent, a partner). The series filmed a roundtable discussion exploring caregiving (across the generations!) as it relates to masculinity and gender norms.

In addition to Justin Baldoni (Jane the Virgin, Clouds, Five Feet Apart), it features former NFL star Devon Still, actor Nathan Kress (iCarly, Star Wars Rebels), comedian and writer Zach Anner (Speechless), and caregiving advocate Robert Espinoza, Vice President of Policy at PHI. Out of this series and the digital campaign that accompanied its rollout, a new care protagonist emerged, a Millennial man who is a family caregiver. By introducing such protagonists into the narrative ecosystem, the series expanded traditional parameters of masculinity that excludes the values of care and caregiving, while challenging traditional, gendered attitudes toward care that place the burden on women caregivers, and render caregiving and care work invisible, undervalued, and underpaid. The series’ digital campaign resulted in hundreds of men identifying as caregivers and sharing their stories about care as they had never done.

In the spring and summer of 2021, working with the Care Can’t Wait coalition, Caring Across showcased stories of care squads from around the country, first via the digital Care Can’t Wait summit, and then by way of the Communities of Care art installation at Freedom Plaza in Washington, DC, created by artist Paola Mendoza. The Care Can’t Wait summit was chock full of inspiring stories from caregivers, care workers, elders and people with disabilities, and helped to cement the idea that care touches all of us.

The summit was highly produced, featured exquisite storytelling, and celebrated care while demanding an investment in care infrastructure that included paid leave, childcare, and supports and services for long-term care. In July 2021, the Communities of Care installation was launched in Washington, DC, as part of a national day of action, and featured photographs of care squads taken by portrait photographer Shavan Asgharnia. Beyond honoring the joy, intimacy, and challenges faced by care teams, the installation envisions a future in which an investment in home- and community-based services means that everyone can live or age in their homes, as they choose, and afford and access the care that they need.

As a result of years of hard work and the COVID-19 pandemic, we are now in an unprecedented moment for care in America. Two years ago, when we talked about our goals of urging people to think about care as a social issue requiring community and public policy solutions, we strategically avoided using the phrase “care infrastructure” too often for fear of alienating our audience. Today, the mainstream media narrative isn’t just primed for conversations about public solutions to the care needs of families, it’s using (and debating) the phrase “care infrastructure” (Covert, 2021). The Biden administration proposed a $400 billion investment in care (Graham, 2021), and lawmakers, economists, and other thought leaders are reimagining what our care infrastructure should look like to ensure all people can live, work, and age with dignity.

The care movement, along with longstanding coalition partners from the disability, labor, and climate change movements, is hopeful and fighting hard, but we know that no matter what happens in the policy sector around care, the narrative and culture change work needs to continue, even double down, and make sure that newly created narrative oceans are sustained and fed. As we saw with the Affordable Care Act, new policy can be tenuous unless the culture rises up to reinforce it.

We need our stories and our culture to do their part to make everyone believe that they deserve a care infrastructure that supports their family’s needs across lifespans and generations. And as we’ve laid out, shifting culture to imagine the care system we want and need cannot be the work of one team or one organization alone. To create the conditions for everyone to live and age with dignity, in the way that they want, we need to imagine ourselves into a collective community around this work and drive the stories and narratives that center our families, our caregivers, our care workers, and our elders.

Bridgit Antoinette Evans, MFA, is CEO of the Pop Culture Collaborative, a philanthropic fund supporting work at the intersection of pop culture, social justice, and narrative change in the United States. Ishita Srivastava, MA, is a cultural strategist and multimedia producer at Caring Across Generations in New York City.

References

Covert, B. 2021. “The Debate Over What ‘Infrastructure’ Is Ridiculous.” The New York Times, April 6. Retrieved August 4, 2021.

Graham, J. 2021. “What’s In Biden's $400 Billion Plan To Support Families' Long-Term Health Needs.” NPR, April 9. Retrieved August 4, 2021.

Narrative Initiative. 2019. “Narrative Change: A Working Definition and Some Related Terms.” May 15. https://narrativeinitiative.org/blog/narrative-change-a-working-definition-and-related-terms/. Retrieved August 4, 2021.

OECD Development Center. 2014. “Unpaid Care Work: The Missing Link in the Analysis of Gender Gaps in Labour Outcomes.” Retrieved August 12, 2021.

Poo, Ai-jen. 2015. The Age of Dignity: Preparing for the Elder Boom in America. New York, NY: The New Press.

Senser, R. 2021. “Pop Culture for Social Change Terms and Definitions.” Pop Culture Collaborative. Retrieved August 4, 2021.