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If you or a family member need state-funded caregiving, you will encounter a cultural conundrum: a system that seeks to provide the vulnerable with a voice, but simultaneously views them and their care providers with suspicion.

People who have never received welfare often don’t understand how it works, noted ������ϲ����� Professor of Anthropology Joshua Reno, who recently published an article on the topic in the Journal of the Royal Anthropological Institute. “The paradoxes of failure in post-welfare: An auto-ethnography of caregiver labour for disabled persons in New York State” explores his own experience navigating the care needs of his developmentally disabled son.

“No one is just handing out money, and many people are employed to monitor and guide your actions throughout the process. In fact, this can lead to a situation where even more money is spent monitoring and surveilling people who are assumed to be cheating the system, even if there is no proof that they are,” Reno said.

Socio-cultural anthropologists such as Reno often bring a personal dimension to their work, as they explore what ideas, concepts or experiences mean to people, whether individually or in groups. Auto-ethnography provides a useful tool to gain in-depth understanding of these different experiences.

In the article, Reno walks readers through the labyrinth of the state welfare system, from official forms to self-directed service plans, and surveillance apps that track the performance of caregivers. As cultural products, these performances of bureaucracy also convey cultural values pertaining to who merits social support and the position of those tasked to provide it, such as hired aides.

“It is about who deserves money, in other words, and the moral assumptions about that,” Reno said. “So much of the infrastructure behind welfare is about exactly that: showing you deserve this and are not cheating the state, with the assumption that deep down you want to, because you are asking for support in the first place.”

Relying on a consumer model, the system ostensibly provides the recipients with the ability to make their own care decisions. Having this choice can be empowering, but even that requires confidence dealing with bureaucratic procedures that can be highly involved. By definition, bureaucracy is impersonal and doesn’t take an individual’s humanity into account, Reno acknowledged.

Now 16 years old, Reno’s son Charlie has non-verbal autism and will almost certainly never work a day in his life; he cannot sign a labor contract, for example, Reno pointed out.

“So I often tell people, with a big smile on my face, that he is going to be like a minor duke or duchess of some monarchy somewhere who never lifts his finger and only lives for his own pleasure. I say that to challenge assumptions that people otherwise tend to express, that it is a tragic state of affairs for him and us that he has the needs he does,” he said.

The real tragedy is that caretakers aren’t paid more to help people like Charlie, Reno added. Why do we care about individuals with disabilities but not the people who provide care? It comes down to culture.

Power and vulnerability

Individuals in need and their family members can often feel like moral failures for using state services, and that may be part of the intent, culturally speaking: American culture relegates moral deservingness to people who make their own way and owe nothing to others, Reno reflected. You can see this in broader contexts as well, such as the reluctance to aid people afflicted by poverty, ableism or white supremacy, since we tend to view adversity in terms of individual choice rather than larger systems.

A capitalist culture that values youth, self-sufficiency and independence can turn a blind eye to the needs of the vulnerable, whether end-of-life care for the larger population or the care requirements of disabled individuals, especially when family members are no longer able to fill in the gap. It also turns a blind eye to the needs of care workers, who are typically low-paid and come from groups with lower socioeconomic standing, such as immigrants, women, the young and people of color.

Taken as a whole, the state system is centered around a paradox, Reno points out in the article: “regular folks are both the best people to determine their own care needs and the least trustworthy when it comes to making those decisions responsibly.” Recipients of state help must therefore be both empowered and surveilled — a frustrating experience.

Reno’s auto-ethnography brings light to an unacknowledged tension between what people need and what people deserve. The idea of “deserving” can easily become caught up in racial and gendered associations about who works hard, for example. In the process, we lose sight of human needs — not only of the most vulnerable among us, but all of us as we age, he said.

As a society, we need to ask ourselves which is the worse outcome: someone receiving undeserved support, or someone who truly needs that support going without. While many people would likely prefer the first outcome, political rhetoric and policy-making can all too often ensure the second.

“It is about power and about how we in an overall capitalist and individualist society are taught to devalue labor and non-labor,” Reno said.