Livia Gershon | Longreads | November 2018 | 9 minutes (2,142 words)

If you’re a highly educated white man without serious disabilities—a description that, not incidentally, fits a large majority of people who make and write about policy in the United States—the economy probably looks like this to you: a web of financial transactions between individuals and companies, with support and guidance from the government. To Leah Lakshmi Piepzna-Samarasinha—a disabled, chronically ill writer and performer—it looks completely different. “Your life is maintained by a complex, non-monetary economy of shared, reciprocal care,” she writes in her new book, Care Work. “You drop off some extra food; I listen to you when you’re freaking out. You share your car with me; I pick you up from the airport. We pass the same twenty dollars back and forth between each other.”

Throughout the book, Piepzna-Samarasinha details how activists in the disability justice movement, led largely by LGBTQ people of color, support and advocate for one other. She describes a neurodivergent person bringing shawarma orders to a social justice conference, crowdfunding campaigns to pay for rehabilitation, and collectively-written best-practice guidelines for closed captioning. When wildfires hit California last year, she writes, “Over and over, it was sick and disabled folks—particularly folks with chemical injuries, environmental illness, asthma, and other autoimmune conditions who had been navigating unsafe air for years—sharing the knowledge that being sick and disabled had already taught us.”

From the usual perspective of policymakers, all this might sound like barely a footnote to the larger systems that deliver the goods and services we depend on. But the labor that Piepzna-Samarasinha describes is, in fact, an integral part of the American economy. The AARP has estimated that the total value of unpaid care that family members and friends provided to adults with disabilities and illnesses in 2013, the last year it was counted, came to $470 billion. That’s more than two-and-a-half times Amazon’s total annual revenue, and it still only captures a fraction of the work we do for each other outside of paid labor. According to the American Time Use Survey, parents spend, on average, about an hour and a half per day taking care of their kids. If you imagine paying guardians $15 an hour, it would add up to $565 billion per year. (And that still only includes hands-on care, not all the hours we spend keeping an eye on the kids while catching up on email, cleaning up their messes, or trying to get back to sleep after waking up to feed a baby at 3 am.)

Collectively, we might place this labor into something called the mutual aid economy. Mutual aid—work we do for each other out of some combination of generosity and obligation, without money being exchanged—has always been central to societies. In the U.S. today, it’s particularly important in working-class, black, brown, and immigrant communities, where there’s not much cash to pay for Uber rides and emergency babysitters. Yet legislation to support those doing unpaid work is rare—and often controversial.

Policymakers’ neglect of the mutual aid economy causes enormous harm to those who give care—disproportionately women—and receive it.

In some ways, it may seem wrong to consider making soup for a sick friend, taking a disabled grandparent to the park, or playing with your own baby as work. These are often some of the most joyful ways we can spend time; these are activities that give our lives meaning. The trouble is, many—particularly the privileged and career-focused among us who influence public policy the most—lack a vocabulary to describe the labor of mutual aid. Given our market-oriented framework, anything we do for reasons other than money ends up looking either like consumption or like a way of making ourselves (and family members) more employable. Is playing yet another game of Chutes and Ladders with your little niece recreation, or is it a strategy to help her improve the rational thinking skills that will boost her future earnings? Really, of course, it’s neither. It’s part of a fundamental human drive to share emotional and material resources with the people around us. And that has economic relevance, too.

Policymakers’ neglect of the mutual aid economy causes enormous harm to those who give care—disproportionately women—and receive it. There’s a reason children under five are the most likely of any age group to be living in poverty: it’s often impossible for parents to provide necessary care while earning enough money to support their families. The AARP reported in 2015 that more than one in five people had retired earlier than planned to look after a family member, and caregivers aged 50 and older who leave the workforce to look after a parent end up losing an average of more than $300,000 in forgone income and benefits over their lifetimes.

Most caregivers say the work is stressful, and significant numbers report that it’s physically difficult or takes a toll on their health. Yet, according to Amy Goyer, a family and caregiving expert at AARP, many people see caring for their elders as “almost a given” no matter the costs. “You don’t complain about taking care of your loved ones, whether it’s your children or your spouse, or your parents,” she told me. Goyer has been caring for family members all her life. “It’s been financially crippling for me, but I would not change a thing,” she said. “I did what was important to me.”


The most obvious way to support care work is simply to pay people to do it. In some cases that’s exactly what happens. People with enough money have always been able to hire help, or to subsidize a family member devoted to caregiving full-time. Since the 1960s, disability rights activists have been pushing for laws and government programs to help people with disabilities live independently; their efforts led Medicaid agencies, the Veterans Administration, and some state and local programs to start paying personal care attendants to provide support with daily tasks like bathing and preparing meals. These programs have enabled some families to hire workers; in some cases, they have allowed family members to receive compensation for some of the care work that they might otherwise be doing for free.

But government agencies sometimes bar spouses or other household members from becoming paid caregivers. Such limitations seem to stem from a belief that spouses ought to provide care for free and that, if funds were available for some of the work that family members are already doing, interest in the program would overwhelm public budgets. (In practice, it turns out that this hasn’t actually been the case in the programs that do permit spouses to be designated care workers.)

In Maine this fall, voters had a chance to approve a referendum to create a universal home care benefit for seniors and people with disabilities. The measure, supported by a coalition of disability rights groups, unions, and community organizations, called for free home care for anyone who needs it, funded by a tax on people with incomes above $128,400. It would also have given home workers the opportunity to join a union and ensure that 77 percent of the program’s funds would be paid to care workers, as opposed to the agencies that employ them. But business groups, home care agencies, and, ultimately, all four of the state’s gubernatorial candidates came out against the measure. “The idea that we’re going to hit 60,000 Maine families and an untold number of small businesses is just going to be a disaster for our economy,” Newell Augur, the chair of a coalition of business and service-provider groups opposing the measure told Maine Public Radio. Opponents also disapproved of the universal nature of the benefit, which would mean that even wealthy seniors would receive public money. The bill was defeated. Organizers still hope to win a similar program through legislative methods, but for now Mainers—like most Americans—must continue cobbling together care for those who need it from extremely limited public and private programs and the generosity of individual caregivers.

We tend to consider paid caregivers as wage workers, but since they’re not just doing it for the money, advocating for themselves can be tricky.

Under Medicaid, family members and unrelated caregivers frequently report that administrators expect them to work more hours than they’re compensated for—and often, because they care about their clients, they do the work anyway. A 2015 study by researchers at the University of California backed up the hours discrepancy with data. “Caregivers are often expected to ‘gift’ hours of care above and beyond what is compensated by formal services,” they found. For example, “Sue,” a paid caregiver of a client with Parkinson’s and depression, told researchers she considered the client, “Jill,” like a sister. When a state budget crisis led Medicaid to cut the number of hours for which she was paid, she still made sure that Jill’s needs were met. But that meant neglecting her own. “Right now, I ask how am I supposed to survive?” she told the researchers. “I can’t have enough water to drink, and I am eating rice with fish sauce and that is still not enough.”

In economic terms, we tend to consider paid caregivers as wage workers, but since they’re not just doing it for the money, advocating for themselves can be tricky. That’s a problem that Caring Across Generations, one of the organizations behind the Maine ballot initiative, is taking on. Formed in 2011, Caring Across Generations advocates for public funding of long-term care and protections for care workers. “Systemically and culturally, we get away with kind of relying on that instinct of ‘Well, no matter what, you’ll kind of go through and sacrifice everything,’” Janet Kim, the communications director of Caring Across Generations, told me. “I think it’s a wonderful thing, our instinct to take care of one another, but we can be taken advantage of. When you look at the economics of it, it just doesn’t work.”


Reluctance to support the mutual aid economy is baked into the U.S. tax structure, which encourages paid work outside the home rather than caring labor. The federal child tax credit and earned income tax credit, the two largest programs providing extra cash to families with children, are available only to working parents. And families can only get the maximum EITC if their earnings are quite low: A single mother with one kid can receive $3,461 if she makes between $10,180 and $18,660 a year. Above that income level, the benefit gradually phases out. In contrast, most other rich countries—including Canada, Japan, and almost all European Union nations—pay child benefits that directly compensate families for some of the extra demands of having children.

Piepzna-Samarasinha believes that preserving and expanding Medicaid and other benefits is crucial. Really, just about any policy that would put more money in the hands of working-class people, including those with disabilities, would help the mutual aid economy to thrive. The trouble is, the system as it exists spends a lot of its energy limiting care—rejecting applicants who don’t seem “disabled enough” even if they can’t get jobs, along with those who make too much money—and focusing on the dangers of fraud (which does exist, but is mostly committed by dishonest healthcare companies, not individual recipients). “It comes from a fundamental belief that disabled people are lying,” Piepzna-Samarasinha told me. “If the system were designed by disabled people it would look really different.” If she were in charge, a policy for the mutual aid economy would start by compensating caregivers for years of neglect: “Providing a kind of back-pay for those inadequate benefits could let people finally go to the dentist, or get physical therapy,” she said.

No one is truly independent, and that’s OK.

One policy idea that would guarantee support for disabled people and caregivers is a universal basic income. In a way, that’s the ultimate policy support for mutual aid—money paid to all of us, with the understanding that all of us do one kind of work or another that we’ll never receive a wage for.

That’s a wild dream, however, especially in a country where the Republican Party is continuing its efforts to cut Medicaid and the rest of the (already inadequate) structure for supporting caregiving. Democrats will likely be stuck largely playing defense at least until 2020. But it’s just such fantasies that have driven the disability justice movement this far. “It’s radical to propose choice in care,” Piepzna-Samarasinha explained. “The charity model is just ‘we’re going to give you these crumbs.’ There’s an underpinning, quite honestly, of ‘You’re really lucky to be alive. You don’t work. You can take what we give you.’”

Disabled people can show the rest of us that we all have things we can contribute to each other, whether we work for pay or not, Piepzna-Samarasinha added. No one is truly independent, and that’s OK. “We’re really taught that having needs is the worst thing in the world,” she said. “One way or another, everybody who’s sick and disabled comes to the place where you’re just like ‘OK, I have these needs, and it’s not the most horrible thing in the world to have them.’”


Livia Gershon is a freelance journalist based in New Hampshire. She has written for the Guardian, the Boston GlobeHuffPostAeon and other places.

Editor: Betsy Morais

Fact-checker: Ethan Chiel