Sunday, September 25, 2022

Creating a Culture of Care

One of the great gifts my parents gave to me was a commitment to caring for one another. I watched them, and grew up helping out, as they would mow lawns, pick up groceries, provide transportation, babysit, and otherwise provide a helping hand to both family and friends. This was especially the case as people faced sickness and grew close to death. It was an expression of generosity and love, and (most of the time!) it was given without complaint. So, it wasn’t a surprise that, within months of the day I moved away to attend university, my childhood bedroom was converted into what became my grandmother’s hospice room. I would travel home on weekends to visit her and my family, often spending hours sitting on what used to be my bedroom floor, playing guitar and sharing stories with my grandma, and sleeping on the couch, before heading back for class. After her death, that room became the temporary residence of a series of other loved ones, who needed a combination of care, supervision, or just some extra help dealing with the ups and downs of life. 

My spouse had some similar experiences, and we carried these values into our own family life together, in various ways. One expression of this was that I spent a decade homeschooling our child. It was an incredibly rewarding experience, but it was also challenging. It was the kind of job that changed and got more difficult each year, so that, by the end, I was re-learning trigonometry and solid state chemistry in the evenings before teaching those lessons the next day. There’s nothing like dusting off twenty years of general knowledge each day for keeping the brain sharp!

But that was not the most challenging bit. I thoroughly enjoyed stretching my mind in that way, especially when it came to designing and teaching our elective courses. No, the real challenge was navigating the social aspects of being a stay-at-home, homeschooling parent and caregiver. I worked part-time in the community, and the three most common reactions I got when I answered questions about my life were: 

  1. Why are you wasting your time doing that, when you could be making a bigger impact doing more important things?
  2. Can you help me with this project since you don’t work and have the extra time?  
  3. Your spouse doesn’t mind that you are basically freeloading off her hard work? 

Many of the stereotypes about homeschooling, especially in a state like Missouri that lacks accountability, are well-earned. Those assumptions and criticisms didn’t surprise me, and they didn’t usually bother me. After all, I also was – and remain – critical about the lack of educational value provided by many homeschooling families. But what I hadn’t expected was the generally condescending attitudes about caregiving in general. Because of my parents’ model of generosity, I had grown up with a respect for unpaid labor and the importance of informal and family caregiving, especially among us working class folks. But once I was exposed to some of the worst assumptions about caregivers, I began to see and understand how little we value care, and caregivers, in our society. This lack of support and respect for caregiving remains shocking, especially when we consider how vital caregiving is to the wellbeing of our selves, families, and communities. 

Undervalued and Overworked

In 2017, a report by the AARP estimated that 41 million family caregivers were donating 34 billion hours of unpaid labor, valued at $470 billion dollars. That figure was significantly higher than even out-of-pocket health costs (which were $366 billion in 2017) and also higher than several important industries. For example, even if we combined the agriculture and mining sectors in the US, that value was still $438 billion, $22 billion less than the value of unpaid care. Yet this economic value is even more significant when we consider that the $470 billion figure was determined using the average wage of paid caregivers, which was $13.81 per hour. 

        The fact that caregiver wages are so low is another reflection of the low value we place on care. As the Economic Policy Institute (EPI) reminds us, “All wages in the U.S. economy are politically and socially determined, but given that care work is heavily publicly financed, care wages are especially determined by political decisions (via commission or omission).” Practically speaking, this means that we could more directly correct wage and labor standards for care workers using public policies if we wanted to do so, but we have not done it. Instead, we consistently and persistently undervalue caregiving, even though it is a huge component of our economy and vital to our social wellbeing. Why? 

Deep Roots

        Part of the answer is in the name: we care. Caregiving is vulnerable to this kind of exploitation because we are often motivated – by family bonds, love and compassion, a sense of self-giving, etc. – to provide that care regardless of the financial or social incentives involved. And because many people don’t think about these issues until they need to do so, when they are already providing or receiving care, there is a sense of just needing to get through this time. Suddenly, the oxygen tanks need to be picked up, the insurance claims need to be filed, the myriad of medical appointments need scheduled and attended, and a whole other host of responsibilities all need to be addressed at once and balanced with work, family, and personal life. Is there really time to think about and advocate for the transformation of the systemic roots of undervaluing caregiving? 

    But even when we do become advocates for change, that transformation is not as easy as we would think. After all, caregiving is truly nonpartisan. Most of us will provide at least some caregiving in our lives, and all of us lucky to live long enough will experience illness and aging that requires help. But, somehow, supporting caregivers and care-receivers still hasn’t been a priority. For example, in 2021, President Biden’s budget included a tax credit of up to $5,000 to help with caregiving expenses. As the budget debate heated up, however, the credit was reduced to $2,000 and, finally, cut from the bill entirely.  

        Many social analysts have drawn a connection between these kinds of failures to our society’s collective misogyny, xenophobia, and racism. 
Historically, caregiving jobs, such as the ever-present but often socially invisible nannies, nurses, and maids, were often relegated to marginalized members of society, such as Black workers and women. Even today, over 90% of care workers are women and are disproportionately Black and Hispanic. As Lenore Palloadino and Rakeen Mabud pointed out

“The undervaluation of caregiving labor and the people who perform it has persisted well into modern times, and the underlying sexism and racism that underpin such cultural norms—rooted in the legacy of slavery and Jim Crow—have made it harder to develop a robust caregiving infrastructure over the decades.” 

        Indeed, even the major paid caregiving fields – such as childcare, residential care, and home healthcare – are too often characterized by low wages for laborers and poor conditions for those receiving care. Too often, training is inadequate and career advancement is limited. As the EPI has reported

“The development of the care sector and disparities within the care sector are fundamentally intertwined with historical and current ableism, sexism, xenophobia, and racism. Globally and in the U.S., care work has been devalued as ‘women’s work’ and is primarily performed by women who face discrimination across other identities, such as immigrant and/or Black and Hispanic women. The devaluation of care work itself, along with the additional layers of discrimination many care workers face, in turn influence and perpetuate low wages and poor conditions in this industry.” 

What We Learned During the Pandemic

Those deep roots may have helped hide the devaluing and exploitation of care work. However, like so many of our intractable social and economic issues, the pandemic has intensified and exposed many of these problems. The number of unpaid caregivers doubled during the pandemic, and an investor’s guide from 2021 estimated that caregiving spending jumped to approximately $648 billion (outpacing even pharmaceuticals)

        Further,  a CDC study of more than 10,000 adults showed that caregivers were at higher risk for poor mental health outcomes than non-caregivers. This was especially true of those who were simultaneously responsible for both parenting and adult caregiving. About 85% of them experienced adverse mental health symptoms related to their caregiving responsibilities, including 50% who reported suicidal ideation in the previous month. But the numbers for all caregivers were off the charts: about 70% of all caregivers “reported adverse mental health symptoms, including symptoms of anxiety or depression (55.3%), … or passive (39.3%) or serious (32.2%) suicidal ideation.” For comparison, only 22% of non-caregivers reported anxiety or depression, and passive suicidal ideation was under 10% and serious suicidal ideation was under 5% for non-caregivers. 

This pandemic study also exposed some of the underlying stressors. Family disagreements about caregiving and resentment about caregiving responsibilities tripled the risk of adverse mental health symptoms. Feeling underprepared for caregiving responsibilities, feeling a loss of personal freedom, and feeling increased financial pressures related to caregiving costs doubled the risks. (ibid) Those financial pressures included both lost wages and out-of-pocket expenses, which the AARP estimated at more than $7,000 per family for the year in 2021. The result was that caregiving cost about 26% of a family’s income. As always, those costs are more devastating for poorer families, as those average costs represent a higher percentage of their incomes. 

        This brings us back to our earlier observations about racial, disability, and economic justice. Michelle Singletary reported that racial and economic disparities meant that average caregiving costs for Black families reached 34% of their total income, while Hispanic families spent approximately 47% of their household income on providing care. Given these and similar realities, it comes as no surprise that another 2021 study demonstrated that Black and Hispanic caregivers were also at a higher risk of adverse mental health outcomes, as were disabled caregivers, younger caregivers, and those balancing caregiving with working long hours or as an essential worker. 

But the statistics do not capture the human feelings that go with those numbers. These stories are often extremely private and personal, especially in a society that cares so little for caregivers. Alexandra Drane, co-founder and CEO of Archangels, an organization dedicated to building a national movement for supporting and honoring caregivers, shared a powerful glimpse into what the stats look and feel like for many people

“One night in the summer of 2020, I had passive suicidal thoughts. At the time I had no idea that’s what it was called. I just felt worn. I was in a very active caregiver situation, and my caregiver intensity was high. I woke up one night at 3 a.m. and lay there reviewing all the ways I was failing: as a caregiver, as a mama, as a partner, and at work. And I just felt tired. And I found myself thinking, ‘You know—if I got COVID-19 right now and went to sleep and never woke up, I’d be OK with that.’ … Our most recent CDC study pegs the rate of passive suicidal ideation for sandwich-generation caregivers at 58 percent. One interpretation of that data and my middle-of-the-night weary was just this: I was normal. / And sometimes feeling normal about something that makes you feel really alone, or even ashamed, is a way to start feeling better. The first line of care is knowing you are not alone.” 

What Change Might Look Like

        That her story touches many of us so deeply, that this feeling could be considered normal, underscores just how deeply our society has failed and how urgently we need change. It is simply amazing that we have managed to devalue what is arguably the most essential aspect of a healthy society: offering and receiving care for one another. And we are left with the always looming question: what can we do? 

First, we can become more aware of and explicit about connecting caregiving with other justice issues. For example, providing universal healthcare would help caregivers both with financial limitations and accessibility to resources. Basic progress in economic justice, such as paying living wages and pension coverage, would make it more possible 1) for people who otherwise lacked the skills or didn’t want to be a caregiver to hire others to provide that care, and 2) for people who wanted to pursue a career in caregiving to financially be able to do so. Most, if not all, of the positions that disability justice advocates have been working toward would also improve conditions for everyone needing care and their caregivers. And progress in racial justice would help address those underlying factors we discussed earlier. If you are engaged in any of these, or other, justice initiatives, you can pay attention to how caregiving is impacted and include it in your advocacy and actions. If you are looking for specific policy analysis and recommendations, a great starting place is the Economic Policy Institute.

At the personal and relational levels, the most immediate action we can all take is to help build support networks for caregivers. Studies by Archangels concluded that feeling support from as little as one other person reduced the risk of depression by 40% and anxiety by 30%, and “having a sense of purpose” was the best protection against those adverse mental health outcomes. Much of this happens informally, in our families and communities, but it is easy to take it for granted. So thank you for taking the time to write those cards and texts, make a phone call, help clean house and cook dinner, run errands, and listen when a caregiver needs to talk. All of it is important. More formally, support groups for caregivers are a good resource for many people, and these are available in person in many locations and also online. Respite care, whether informally with a friend or formally with a program or voucher, is essential for many long-term caregivers. Archangels also maintains a resource page that is searchable by state. 

All of this will also help us transform our broader culture, too. A basic reflection that we can use throughout the day to help us be more aware of and committed to this transformation is simply: What might a society look like that reorients itself around supporting and valuing the giving and receiving of care? All of us require care, every day. Even when we can provide much of the care ourselves, we rely on our entire society to help provide the resources we need to enjoy life. We need to normalize that support and accessibility for everyone. There is no reason why we can’t build the infrastructure we need to support this basic social function. No one should ever be left to feel like a burden, and no one should ever need to feel burdened, by the giving and receiving of care. If we care about our future, we will care about caregiving, and reshape our society to reflect those values. Whatever action you can take, let’s work together to make this long overdue transformation something real.