The following guest post from researcher Amanda Gray Rendón is part of our Vanishing Culture series, highlighting the power and importance of preservation in our digital age. Read more essays online or download the full report now.

When asked to consider women’s care labor, people likely think about feminized gender roles within “the domestic sphere” where labor has historically been invisible and undervalued. For women of color, the lines between public and private have often been blurred, as evidenced by the family photo of my great-grandmother picking beets in a field while caring for my two-year-old grandmother. Sixty years later the roles would reverse and my grandmother would serve as the primary caregiver for her mother with Alzheimer’s dementia. I could not begin to quantify in dollars the thirteen years of 24/7 care she provided our family.

In U.S. culture, women have historically been thought of as “natural” caregivers or predisposed to caring for others, so little to no concern has been given to assigning monetary value to the labor that women are expected to perform.

This begs the question: how can we adequately archive a history that is designed to be hidden and undervalued precisely because of how invaluable it is to our social, cultural, and economic fabric? 

Women’s care work—both paid and unpaid—serves as the foundation on which the world’s postindustrial economies have functioned. Working mothers and caregivers often participate in what scholars refer to as the “double-day,” or the “double shift.” This is when (predominantly) women have an income-earning day job followed by unpaid caregiving labor they provide their families when they get home in the evening after “work.” Some have argued women’s care work has expanded into a triple shift whereby women have taken on more caregiving roles within their communities, adding significantly to gendered burdens of care.

The invisible, and at times isolating, nature of care work contributes to the precarity of archiving women’s care labor history. To preserve this aspect of our cultural history, it’s vital to engage with those performing care work, as well as to understand the different ways that community care work is performed. Documenting caregiver culture on social media allows us to identify the contributions that caregivers and care communities make, along with the barriers they face.

No one has helped me to understand this more than Cynthia “Cindy Ann” Espinoza. Cindy Ann and I met when we both attended Metropolitan Community Church in San Antonio. She graciously offered to participate in my research when I spoke at a community education session on Alzheimer’s disease that the church sponsored in collaboration with the local chapter of the Alzheimer’s Association. We became Facebook friends shortly thereafter and I observed firsthand the virtual care work in which Cindy Ann participated, as well as the archive she had created of the “real world” care she provided her mother who passed from complications of Alzheimer’s dementia several years earlier.

On January 17, 2017, about a week before PBS aired the documentary Alzheimer’s: Every Minute Counts, Cindy Ann posted a video excerpt from the film to her wall on Facebook. The three-minute video, with 4.4 million views and over 5,000 comments, was originally posted to Facebook by Next Avenue, a PBS digital publication dedicated to issues facing individuals over 50 years old in the United States. The documentary follows Daisy Duarte, a Latina in Minneapolis, as she cares for her mother, Sonja, who is living with early-onset Alzheimer’s dementia.

Next Avenue’s original post reads, “Millions of Americans will be able to relate to this story.” Cindy Ann identified herself as one of those millions of Americans almost five years after her mother’s passing from complications of Alzheimer’s dementia. Her post included the message, “I can relate to this woman in this story. Its the hardest thing to see ur parent dealing with Alzheimer”s ..but i did it for 9 yrs caring for my Mom i have no regrets. I would do it all again even if she didn’t remember who i was. I love & miss you dearly Mommy..” Cindy Ann watched Daisy wash her mother’s clothes, brush her teeth, apply her makeup, do her hair, show her how to hold a spoon, sit her in a recliner to watch television—all while exclusively speaking Spanish. The invisible care work Cindy Ann provided her mother nearly a decade before was publicly visible for the world to see.

I also related to the family portrayed in the film. As I viewed the video, I was reminded of my own experience helping my grandmother care for my great-grandmother when the three of us lived together in San Antonio. This personal connection prompted me to comment with a note of: “thanks for sharing.” I appreciated the connection Cindy Ann created in that moment.

Several of her other Facebook friends left comments in response to her post. There was one from an employee at a local adult daycare facility: “Yup and ur mama was a beautiful blessing for us at seniors 2000! I loved her so much <3;” and another from a current caregiver, “Aww I’m doing it right now. My heart aches every time I leave my mom. I pray for her mind to heal. It’s one of the ugliest diseases ever encountered! I pray they find a cure very soon.” Others were comments of support, such as: “Super hard, girl.” and “Amen.” 

The commenters were all women who either acknowledged Cindy Ann’s experience as their own or validated it with words of empathy and support. That winter morning, Cindy Ann’s public Facebook page was a place where women came together to share a commonality of experience in an online space.  The care community helped to make visible their friend’s caregiving labor, as well as their own—in effect becoming a part of care labor history.

Though the internet seems to be “forever”, the ephemeral nature of certain online spaces—such as social media pages and posts that can be deleted or websites that are no longer supported—necessitates an archival space such as the Internet Archive, which on May 9, 2017 captured the full-length documentary Cindy Ann posted about. Nowhere else on the internet can I access this film without a subscription, rental, or purchase. As a researcher, the Wayback Machine is an invaluable archival research tool that I rely on to provide accurate records of historical online spaces I can no longer access. However, we must find a way to better preserve social media pages such as Facebook, Instagram, X, and others where caregivers post and provide community care. The sheer volume of pages and posts may have made this a challenging task previously, but with new AI language learning models, we can begin to conceive of ways to more pointedly target and capture the rich history of online care communities and women’s virtual care work.

To preserve a more complete and inclusive history of women’s caregiving labor, digital archivists must seek out the spaces where women are performing the work. The Internet Archive serves as a record that women’s care communities exist, have always existed, and will continue to exist. Documenting the challenges women caregivers face, the support they need, and their shared spaces of communal experience helps to create a more complete historical record of their cultural impact for future generations.

About the author

Amanda Gray Rendón is a community-based researcher, writer, oral historian, and documentary filmmaker. She is currently a Mellon Postdoctoral Fellow in Global Narrative Medicine and Digital Health Humanities at Wheaton College. She received her PhD in American Studies with concentrations in Mexican American & Latina/o Studies and Women’s & Gender Studies from The University of Texas at Austin. Prior to her work in academia, Gray Rendón was a project manager in implementation services for a medical software company followed by several years in case management for a mediation and arbitration firm in Washington, D.C. She is the recipient of fellowships and appointments at several institutions, including the Inter-University Program for Latino Research, Earlham College, the Smithsonian National Museum of American History, and Saint Louis University. Her scholarship centers the lived experiences of Latina professional and family caregivers. Her commitment to social justice and accessible community-based knowledge production is a core principle of her scholarship and pedagogy.