When friends or colleagues heard what I was doing at home, they often responded with the same phrase: “I couldn’t do that.” I’d wonder what they meant. Couldn’t they? If their mom were too sick to make meals or wash or do anything at all, would they just leave her there?
Of course not. Instead, they meant that they couldn’t see where neediness fit into their lives, because their lives were arranged to pretend that care didn’t exist. For them — perhaps for you, too, if sickness hasn’t yet rearranged your life — care was something that happened to other people.
This disconnect is the real cause of our crisis of care. In the United States, at least 53 million people are performing the difficult, vital role of family caregiving — about one-sixth of the population. Yet the country fails to acknowledge this: that at some point in their lives, an enormous number of Americans are likely to become caregivers.
This fallacy is implicit in the federal government’s 2022 National Strategy to Support Family Caregivers, which commits to “convene a task force to develop a consensus definition of family caregiver.” The proposal is part of a package of recommendations, many of which would hugely improve caregivers’ lives. But the desire to define “family caregiver” implies that this is a category of people divisible from the whole — that they are, by definition, not everyone. Moreover, this group is so hard to define that an entire task force is required.
But what if, instead, “caregiver” were assumed to mean everyone? What if the role were merely synonymous with human life?
This is a conceptual point but a practical one, too. Think about it: We live in breakable bodies. We need care as infants, we need care when we have the flu or break a limb, and we need care when we get really sick or frail with old age. Our lives are characterized as much by neediness as by independence.
It follows, then, that our social arrangements ought to reflect this evidence-based reality. Caring should be seen as an expectation — not an interruption. Instead, officials pathologize caregiving, and care is cast as an unfortunate obligation.
The effect of this cultural failure is often devastating for U.S. caregivers. They can expect to lose income and pension savings, to experience higher depression and anxiety rates, to suffer from a burnout so prevalent it has its own name (“caregiver stress syndrome”), to lose their marriages and, most startlingly, to die more quickly. This is a high price to pay for carrying out what is surely the most human of tasks.
There is another way. Take, for instance, the experience of Line, a musician and teacher whom I met during research for my book. She lives in Norway, which has some of the most care-friendly policies in the world. Line has an adult son who has been disabled from birth. Over the years, she has needed long stretches of time off from her job, either to care for her son or because she herself has been unwell from exhaustion. Each time, her leave has been paid, and her job has been protected legally. Today, she is still who she was before her son was born: a musician and a teacher.
If Line lived in the United States, it is doubtful this would be true — because people here are forced to choose between caring for our loved ones or working and earning. Such a woman would probably have lost her job by taking time off to provide care, either because of insufficient leave entitlements or because of discrimination, and the school where she worked would have lost a dedicated and skilled teacher.
It is a stunningly bad arrangement. But this is not an intractable problem. In fact, its failures make the workplace the perfect laboratory to revolutionize our idea of care — and legislate from there.
First, if care is considered an inherent part of daily life, it follows that people need to work less overall, not just in times of crisis. A recent trial in Britain, in which more than 60 companies reduced the working week from five days to four without docking pay, was overwhelmingly successful: More than 90 percent of the participating businesses opted to continue after the experiment ended.
This was not the first success story of the growing global campaign to shorten working weeks. Results from Iceland, Belgium and other locations have also been impressive.
In the United States, bills have been filed in Maryland and Massachusetts using tax credits as incentives for businesses to reduce their working weeks. While this would be a major step forward, it risks creating a two-tiered labor market in which some businesses opt in but most force people to choose between work and care. Better would be to legislate for a four-day week across all sectors, ensuring care ranks equally beside work in everyone’s lives.
Second, Americans need a universal right to paid caregiver’s leave, without which people risk repeatedly losing their jobs. Currently, family medical leave is unpaid and so restrictive that, according to the Labor Department, 44 percent of U.S. employees are ineligible.
Instead, we could follow Norway’s example, expanding leave to all workers and sharing the costs between employers and government. If you need a business case, consider the recent Harvard Business School finding that providing caregiver leave can reduce turnover, especially of senior-level employees.
As President Biden recently noted, the United States has the dubious distinction of being “the only major economy without national paid leave,” despite efforts to the contrary. Change is surely not on the immediate horizon. But we can take inspiration from lower tiers of government.
Several states, including Connecticut and New York, have introduced paid entitlements for those taking time off to provide care; others should follow suit. Importantly, these policies include job protection for eligible employees, so people’s working trajectories aren’t penalized due to short-term care needs.
Of course, employees might still experience discrimination. Those 53 million U.S. caregivers — and I remind you, you are likely to be counted among them in the future — have limited rights under federal law, which has no direct provision to protect them. Once again, many states and local jurisdictions are leading the way; at least 84 areas have passed laws prohibiting workplace discrimination against caregivers. The best of these laws ensure that employees cannot be harassed, refused work, fired or given limited opportunities by employers because of their caregiving responsibilities. This is great for people living in those places, but this shouldn’t be a Zip code lottery.
Ultimately, caring for loved ones should be a fundamental, protected right. Enacting changes to American laws would put care where it should be — embedded in the foundation of our governance and our lives.
