35: Removing barriers to community care
The way to build something is to stop preventing people from building it themselves
I was educated to believe settlement houses and their modern equivalents were organizations that improved lives. There’s a reason I’ve done so much work with nonprofits, as an employee and as a volunteer. Then I immigrated and became a participant in these programs and it became clear that they were far more effective at funneling money to do-gooders with degrees than serving their constituents. I also read Illiberal Reformers: Race, Eugenics, and American Economics in the Progressive Era and reconsidered the history I’d learned in school. Luckily, most of our attempts to manipulate people have no impact at all rather than having the sort of lasting impacts of residential schools.
These programs aim to mold people into the type of people we want them to be. If they worked, they would be beneficial in that they would then be the kind of people that the government, nonprofits, and corporations are set up to help. Unfortunately, very few people are that kind of person. The rest of us are stuck doing the best we can, somewhere on a scale of “largely on our own” to “while institutions ruin our lives.”
As we’ve covered, institutions aren’t inherently bad. Bureaucracy exists because it serves a purpose. Rather than trying to eliminate it, we need to remember what goals can be achieved through regulation. Generally, if the goal is to manipulate people into doing what we want them to do, the ultimate outcome is not going to be something we’re going to be proud of.
This is how being considered a chronic incurable during the asylum era was actually pretty great, because no one was trying to mold you into being something else. As long as you didn’t cause too much trouble they would move you out of public view and let you be. Given the way things were going between 1790 and 1990, that was one of the better situations you might find yourself in.
It’s easy to condemn how things went during that time. Asylums were bad. Residential schools were bad. Orphanages were bad. Penal colonies were bad. Only the people setting them up seem to have, for the most part, earnestly believed they were doing the right thing. Why do we think we can force people into being better? Adam Mastroianni gives us an explanation:
“I love people, but a lot of them—maybe most?—yearn for their side to acquire absolute power. They seem to believe in the authoritarian school of social change: the only way to create a better world is for a strong central actor to force it on everybody else. They don’t think of this as tyranny, of course. They think of it as doing the right thing. And if a thing is right, well, duh, you should make people do it!”
Let’s say, hypothetically, that we wanted to support people without tying that support to demands that they change who they are. Here are some ways we could accomplish that:
Make it automatic
There are several agencies that serve as gateways to support who require us to determine what programs we might qualify for, apply, and regularly re-submit information they already have access to. The government could use tax returns to identify and enroll people in support programs. Insurance companies could also bridge the gap.
Discovering, enrolling in, and maintaining enrollment in support programs is a huge portion of caregiver burden. Operating support programs this way is a choice that agencies purporting to serve us have made – they have chosen to outsource the labor of navigating these programs onto its beneficiaries and made them complex in order to deny people access to things they’re entitled to. Our paperwork could be set up so tax returns (or another largely universal document) unlocks a cascade of benefits.
Every building that’s built or renovated is done so with approval by government authorities. There are numerous regulations that need to be followed, yet few local building codes incorporate the requirements of the Americans with Disabilities Act, which is instead enforced through the court system. Universal design standards could simply be incorporated into the building code. Inclusion by default is ultimately simpler than trying to add it on after the fact, when someone complains.
Taking off our morality police badge
I’ve considered various PhD programs in the past few years. I have not considered any disability studies programs because I am simply too cancel-able. No one needs to comb through my old tweets or hack my emails (which are a gold mine of sins) because I say the wrong thing all the time.
The thing is, I like to think of myself as a redeemable person. It’s uncomfortable when someone points out that I have no idea what I’m talking about or scowls at what I thought was a clever quip. There’s that awkward gap between my expectation and reality. When people have let me face the consequences of my actions without going on the offense – making it clear I’ve said the wrong thing without shaming me for being a bad person – it leaves room for growth.
When we believe people are inherently immoral, we see the worst in everyone around us.
Care is not about a checklist. We cannot legislate good care – and when we try, people continue to find loopholes until the regulations have made all care impossible. None of us want to live a risk free life. Also, I just have this feeling that people who believe everyone else is secretly just waiting for the opportunity to commit crimes and abuse others is…probably a monster themselves? Or an uncommonly bad judge of character? Or someone going through a traumatic event without proper social support? Regardless, maybe they’re not the best choice for someone in charge of a program that’s supposed to help people. Yet we seem to have these people making the rules and calling the shots at all sorts of government agencies and nonprofits.
It feels like a lot of people are out there policing my behavior, even outside of Big Care. The funny thing is that I’ve encountered plenty of actual police officers and people who are literally responsible for policing my behavior and lots of them do it in a way that feels warm and unobtrusive, like they’re there to help make sure everyone stays safe. The most obvious feature of their behavior is they don’t treat me like they are assuming I, and everyone else on the planet other than them, is a (current or future) criminal. So, if you’re going to be an unofficial cop, consider taking some lessons from the good apples instead of the bad ones.
Even sadder are the people who are bad cops to themselves. They don’t just assume everyone else is secretly a current or future criminal, they think that if they allow themselves a moment of empathy or rest their inner Bad Person will burst forth. When I encounter these people I try to offer them the understanding they deny themselves and encourage them to reconsider their viewpoints. Maybe, though, I should open a bed and breakfast in Geel and start organizing noventas at the shrine of Saint Dymphna for them.1
Design for people
I’m not in Mensa or anything, but I do alright. My most employable feature is my ability to complete tedious government forms on a deadline. Yet I regularly encounter bureaucratic systems I cannot navigate. I recently discovered I was paying for a medical insurance plan that offered fewer benefits than my grocery store loyalty club program.
Some bureaucratic systems are starting to offer information in plain language – the US Social Security system is good at this. They offer support that isn’t a circular phone tree – the people answering the phones for the Canadian Revenue Agency are consistently professional and determined to get things sorted out. They make things that work on the devices we’re used to using – Portugal’s MB payment system is great. There are a lot of people within giant organizations who are already fighting to make these changes.
The Canadian government tried very hard to build a website to provide information to everyone who wants to go to Canada, no matter what their situation. It is absolutely impossible to navigate or make sense of. Once I became a Canadian citizen, trying to figure out how to vote for the first time was similarly confounding. Their attempt to make voting accessible to everyone meant there were so many options and so many sets of instructions that even I, a native English speaker with a masters degree in corporate communication, could barely figure it out.
Despite my complaints about our risk averse culture, I support wise regulations. Remember when everyone was fawning over Zappos for allowing their customer support team to use their own common sense? Making so many rules no one can make sense of them (see: the US tax code) does not serve any of us.
Our systems have been set up to discourage things that turn out to serve us pretty well, leading to a “missing middle.” We can tweak policies to bring back things like cooperatives, permit multi-family housing, and usable public transit.
There are lots of people working on these projects and almost none of them think of what they’re doing as caregiver support.
This is not charity
Each of us came into a world where we benefit from the achievements of our ancestors. None of us had to discover fire or thermodynamics on our own. We are all heirs to the wealth of human advancement, including the benefits they bring us. None of us need to prove our deservingness of this; it’s simply part of being human.
Recognizing the inherent worth of people means allowing people to contribute in the ways they’re able. People should be free to contribute to their community, through paid work or volunteering, without the risk of losing support services. If we think someone has nothing to offer, we are looking at things all wrong.
The idea that a consultant for a Fortune 500 corporation contributes more to society than a school crossing guard would be a tough case to argue.2 Right now we have a world that demands people contribute in very specific ways and ignores certain types of contributions. This is not the natural order of things. This is simply how it is today.
Something for everyone is something that sucks
When I was living in Toronto, I ended up in a lot of conversations where people wanted to organize events and yet very few events actually happened. This is because Canadians are very nice people and want events to be accessible to everyone. This means finding an event venue that provides for the access needs of everyone we could conceive of – some of which are in conflict – and identifying people to provide additional support. Then there’s the need to pay for all of this while making the event accessible to people without the financial means to pay to participate. No event was both acceptable and feasible.
Which is ultimately fine, because things that are for everyone are really for no one. Something that is equally welcoming to everyone becomes so bland as to not be particularly appealing to anyone. You end up with the event equivalent of Canada’s immigration website. Few things are universally welcoming. To really generate warmth you need an idea of who you want to feel welcome.
I’m not arguing that we should stop caring about accessibility. I just want us to acknowledge that making everything for everyone is not a goal we should strive for. It is okay – and possibly good – for us to be excluded from things occasionally. A better goal is to ensure that we are not consistently excluding the same type of person.
We say The Caregiver Space is for everyone involved with care work, but that’s obviously not true. It’s for a particular segment of people who speak English, are very online yet aren’t so online that they’re not on Facebook, and cope with things by over-intellectualizing them. If you want to read 50 essays from people who’ve been in similar situations and then chat about it, we’re the group for you. If you’re not, well, there are a lot of organizations out there. This doesn’t feel unethical, even though it excludes a lot of people, because Adrienne (and Allie, and Jonah, and Paul, and Bob) and I created this based on what we wanted for ourselves. If someone wants something else, well, cool, I hope they create that because I’m sure lots of other people also want it. The nice thing about communities is we can be part of more than one.
Waiting for the solution with only upsides, that is perfect for everyone, is just one of many ways to stay stuck in the bog. Demanding participants be perfect – perfectly aligned with our opinions, perfectly clean track record – is a great way to ensure we’re waiting around forever and never finding the right teammates. All solutions are imperfect, just like all people are.
The other thing is that, ultimately, we have no idea what’s best for people. I’m full of opinions. You probably are, too. It’s so easy and satisfying to solve other people’s problems! Plenty of us can opine on how to achieve world peace. Only, the real world track record of how these things go is not so great. A lot of our ideologies don’t fare so well. Neither do our scientific theories. We’re all ultimately just making our best guess.
This is why it’s so beautiful that we’re surrounded by people who’ve come up with their own solutions to these problems. People have built what works for them, with the resources they have at hand. None of them is perfect. None of them should be copy/pasted to every community on the planet. They all seem to work pretty well, though. People are, by and large, pretty great.
I was looking for a magic key to unlock a magic solution. I didn’t realize I was hoping the spirit of Saint Dymphna would give me the cure to all of our problems with zoning regulations and funding limitations and judgmental neighbors. I thought I was researching something solid and fact based. It turns out I was having my own little Wizard of Oz adventure.
There’s no place like home. We already have the missing pieces we’ve gone on this pilgrimage to find. It turns out there’s nothing wrong with us. We already are a compassionate community. We are trying so hard, expecting things to be solvable. But there is no solution to the human condition, beyond our magic ability to turn work into play and play into work.
Any solution that demands we never make a mistake and keep going forever, regardless of how tired or heartbroken we are, is not a solution – it’s a death sentence.
The things that protect us from caregiver burnout and protect care recipients from abuse are not a mystery. You know them. Living alone and doing things alone seem easier and they are, for the short-term. Lots of things are great in the short-term and awful in the long-term. Lots of things are ideal for some circumstances and awful for others. The solution is not going to be scalable. The solution is not to work harder, but to do it together and turn it into a good time.
Of course, in the same post where Adam Mastroianni pointed out why it’s so easy for things to take a troubling turn, he pointed out why my silly suggestions are doomed to fail:
“There is no manager to speak to, no master switch that can turn the bad thing off, no Committee on Problems who could decide to discontinue this particular snafu. You cannot vote to abolish traffic or petition to end hunger—or, you can, but it won’t do anything other than give you the warm glow of appearing to solve a problem without actually solving it.”
Don’t worry, the Catholic Church has gotten way more chill. These days a noventa just entails praying at the shrine nine days in a row. People are allowed to bathe, eat, change their clothes, and not be shackled in the “pilgrim’s hostel.”
"A year or so back, I was having a discussion with a non-economics student about some difficulties in doing benefit-cost analysis, because it can be hard to put values on some outcomes. The student listened to me patiently, and then said: “Well, it’s not like you have to put values on everything.”
And I thought: That feeling is one of the fundamental differences between economists and non-economists. When there are both benefits and costs, and choices about how to proceed, we as individuals and as a society do in fact put values on everything. These values may in many cases be implicit. We don’t explicitly say what it’s worth in dollar terms to, say, make a highway off-ramp safer or to raise the math test scores in an elementary school by a certain amount. But in making decisions about what to do, or not to do, our values are expressed nonetheless. And then economists come along and try to estimate these values explicitly, which can make non-economists deeply uncomfortable." https://conversableeconomist.com/2024/08/26/disability-weighting/