Wild, haphazard, and so counterintuitive

The indifferent brutality of systems

There’s a gap between people who researchers identify as caregivers, based on data, and who identifies as a caregiver, based on voluntarily claiming the label. People who identify as caregivers are more likely to be white, female, middle-aged, and middle-class than the overall demographics of people who provide care.

Which is why this snippet from The Whippet (a newsletter I always look forward to) keeps coming back to mind:

“An interesting thing happens when a legal case or criminal investigation gets a lot of attention: the way the case is handled (or mishandled) seems so wild, so haphazard, so counterintuitive to justice, that people think there must be a conspiracy. In fact, the justice system in many countries is wild, haphazard and counterintuitive all the time, but people didn't know that because they've never followed a case closely before. They think something hinky is going on with this particular case that happens to be the only one they've paid attention to. [relevant: Lawyer Ken White talking about the reactions his differently-incomed clients have to their encounters with the US justice system]

Every single time I look deeply into anything, I go in with my bias of "what seems like it would make sense" and "how you imagine things would tend to be in a basically functional system" and I am usually wildly wrong.”

Given the way people attempting to access support for the first time frequently comment on how they feel they’re being treated like a criminal, I wonder if this experience is mirrored in the world of caregiving.

Most of my interactions with government agencies feel like they view me as a criminal. This is true of the three countries I’ve lived in: the US, Canada, and Portugal. The times I’ve had neutral or pleasant encounters stand out in my memory. Their systems are set up with fraud prevention as a major concern, so they tend to be incredibly unwelcoming and difficult to access. They’re also systems that are the result of many accidents and arbitrary decisions, layered on top of each other for hundreds of years.

For most of my life, my interactions with government systems were limited. I accepted the hassles of the DMV and viewed it as a broken system in need of reform. When I encountered other bureaucratic hassles, I viewed them as some sort of mistake. Clearly, something had been misfiled or mishandled.

The Ken White post The Whippet links to has this to say:

“The criminal justice system is so perverse, so Kafkaesque, so indifferently brutal, that it seems inexplicable that what is happening to them happens to everybody…

My indigent clients didn’t express that feeling at all. They had no expectations of fairness or courtesy or reason. Most of them had been through the system before, or had family who had been through the system. They expected Kafka, and got him.”

I suspect that people who have already encountered the indifferently brutal nature of the government are not surprised when they encounter the indifferent brutality of the medical care system and the impossible to navigate collection of caregiver support programs.

It’s those of us who were shocked and appalled that are most likely to feel moved to seek help, advocate, and raise awareness. Those who have already been let down by the government and institutions that are ostensibly in place to protect us feel, rightly, that it’s a better use of their time to do what they can with what they have. They quietly carry on, providing the bulk of care work, without participating in caregiving organizations or identifying as caregivers.

There are many reasons why people decide to identify themselves as a caregiver or not. Certainly, many people who grew up with a knowledge of the indifferent cruelty of bureaucracy do choose to identify as caregivers. One of the biggest challenges to creating a welcoming space is how little I understand of other people’s experiences.