This is part 31 of a series. To go back to the very beginning, start with part one.
You probably already know how much I bristle at the idea that the care crisis is a new thing. I do not find it plausible that the burdens crushing us are because medical care is too successful and not enough people are dying. Disabled people have always been able to survive and thrive when we’ve let them. Old people are not a new invention. It seems that the modern invention is a few weeks or months – as a doctor once described it to Adrienne – of circling the drain.
We have all of these articles on how the coming caregiving crisis and silver tsunami are about to destroy everything because modern medicine is just too good. They belong in the same category as articles warning us that AI is so smart it’s going to take over the world. Someone out there benefits from us believing the people in charge are so smart and so successful it’s scary. The ubiquity of these ideas is proof that if you repeat something often enough, people will accept it. Fair enough! We can’t critically examine every little thing we’re told.
But when we think about it, it seems more likely that any crisis or tsunami are not caused by the wonder of modern science but rather the persistent lack of significant progress, the proliferation of new health problems caused by pollution and industrial food production. Movie plotlines show characters deciding to chase their dreams in order to achieve their full potential, while off screen few people can afford to meet their basic needs without going into debt.
Obviously, care has always been part of life. Why is this basic part of the human condition a big problem now?
The end of forced institutionalization by default means far more people are remaining in the community, with their care being provided or overseen by their family. People living in institutions are subject to neglect and abuse at much higher rates, with higher death rates as a consequence. More disabled people living in the community means a higher survival rate and more demands on their family and friends, due to a lack of community care support.
The reality of human care needs has not changed. What has changed is that isolationist (and worse) policies from the eugenics era have mostly come to an end, allowing more people with care needs to remain in the community…and survive at all.
This shift towards a recognition of basic human rights happened alongside economic shifts that have put renewed economic pressure on the middle class. One hundred years ago, many white middle class families would have had live-in servants to provide care. Fifty years ago, there were still many middle class families with “stay-at-home-moms” available to meet care needs. Today, the majority of middle class families meet the requirements of their social class through the use of mortgage debt, college loans, credit card debt, and medical bill forgiveness. As middle class families become less likely to have the financial resources required to pay for care or provide care themselves, we get the “caregiving crisis.”
With the “servant problem” home health care became far more difficult for middle class families to access, as live-in household help was replaced by hourly staff or none at all. Middle class families then found themselves requiring two full-time incomes in order to maintain their class status. Today, middle class families are neither able to afford to pay for adequate household help nor able to provide care directly.
As Mark Stolow pointed out in a long lost Canadian Caregiver Network blog post, one of the reasons the caregiving crisis gets so little action is all the competition it faces. There are a lot of crises unfolding around us and it seems that nearly everyone identifies with the symptoms of burnout. The inaction is less about a lack of awareness about the plight of family and professional caregivers and more about the sheer number of crisis situations that all demand a response simultaneously.
A very short care menu
I have to say I’m disappointed by the limited options for care on the menu. While I haven’t exhaustively researched the provision of care for adults, the options seem to be variations of the same few choices: live at home with your family, live in a group home or subsidized housing earmarked for the disabled, or live in an institution. There are the same few sorts of options for financial support and direct provision of goods. This support has always been designed to be insufficient and to be degrading in order to discourage people from asking for it.
The provision of care over time lacks the sort of significant difference I expected. The newspaper headlines and court records have the same scandals and disagreements regardless of the time period. It was the details that made it clear what era I was reading about – specific diseases that have become a non-issue, fights over who inherits the one bed and three pots owned by a family, the ubiquity of servants. The actual drama remains consistent.
Some narratives curate things to show continual progress. They emphasize histories of neglect, abuse, and murder of the disabled in order to show how wonderful things are today. There are certainly plenty of historical examples of widespread neglect, abuse, and murder to choose from. It’s easy to give people the impression of progress when we start the history of disability during the age of institutional care.
Given the way the disabled are cared for today, I am highly skeptical that things are better overall. People with disabilities are still denied access to basic necessities, notably by government policies that require them to become and remain destitute, deny them the ability to marry, and force them to rely on unpaid direct care and administrative support from their next of kin or strangers chosen for them by court-appointed guardians. Even people living in places where they theoretically have the right to housing and medical care may lack access in reality. Being disabled today still greatly increases one's risk of neglect, abuse, and death.
The examples of community care and support that we celebrate today have their historic counterparts. The past is simultaneously the bad old days and the good old days, depending on the particular circumstances of the person in question. Overall, shockingly little seems to have changed for disabled people.
My research has focused on North America and Western Europe, for the sake of simplicity. However, I’ve asked hundreds of people about the provision of care. Some of these have been scheduled interviews, while much more has simply been asking everyone I know about a topic I’m obsessed with. I began this project while living in Toronto, a city with a huge immigrant population, and am now living as an expat in the digital nomad hub of Lisbon. I’ve had extended discussions about care with around fifty people in my language conversation groups, most of whom are from Africa, South America, and Eastern Europe and nearly all of whom have lived in multiple countries.
There have also been things like how one of the subjects of Nothing to Envy: Ordinary Lives in North Korea worked in a nursing home for the mentally ill. I expected cultures that are different from my own – and countries with different economic systems – to have come up with different ways of doing things. It seems that, despite all of these differences, we do the same few things in somewhat different ways.
There’s also the more likely explanation that I am making sense of what people tell me through the lens of my expectations and this is causing me to misunderstand everything.
The scientific age was not a good time to be disabled or poor
My father began his career as a high school science teacher, before shifting into computer programming. He’s the founder of a science / history center. He indulged all of my curiosity about science. I went to a school that was called, I kid you not, High Technology High School. You have to believe me that I was fully indoctrinated into the promise of technology and the wonder of science.
I understand why they teach us about the nice history of science and technology. We want kids to emulate certain behavior and not other behavior. Still, it’s true that much of the history of science and technology is not very nice. It is, of course, inextricably entangled in the rest of history.
The time period from roughly 1850 to 2000 was…wow.
The same horrors get cited all the time, like the Tuskegee Syphilis Experiment, which leads us to assume those examples are uniquely bad. Really, though, writers are in a rush and everyone just copies off of each other instead of finding other examples. There are, alas, lots of examples. Germany gets all the attention when it comes to genocide, but they’re part of a pretty big club. They weren’t even the ones who came up with eugenics.
For a fun read to disenchant yourself about the men of science, I like to suggest The Seeds of Life, which recounts hundreds of years of men of science using logic and evidence to prove that men make babies. If you want something shorter to capture the zeitgeist, there’s this piece on how scientists studied how much iron was absorbed from eating oatmeal.
What makes Geel such a good example for telling the history of care is because, in addition to being tossed around from one country to another, they followed all the trends. Geel forced people into institutions right around when many other countries were doing the same and let them out around the same time.
Human rights
One reason that neither the actual nor the mythical version of Geel can be replicated, or even maintained, today is the expansion of human rights. Let’s use the story of Joyce Patricia Brown to illustrate this.
The boarders in Geel did not have the legal authority to decide where they wanted to live and were not permitted to leave the boundaries of the Colony of Geel until I was in elementary school. In the US, it’s still common for people with significant intellectual disabilities to have a legal guardian named while they’re under the legal age of majority. Today those who are solely mentally ill or who acquire an intellectual disability are far less likely to be stripped of their right to make their own decisions.
Brown lived with her parents in Elizabeth, NJ until she was 30. She spent the next decade living with her sisters, shuffling from one home to the next. The family pooled their funds to get her a place of her own, which wasn’t sufficient to prevent her from becoming homeless. In 1985 she was formally diagnosed with schizophrenia. In 1986 she cut ties with her family and relocated to nearby New York City.
Brown quickly gained the attention of a city agency designed to support people living on the streets. Staff would occasionally bring her to a hospital, where she refused treatment each time. Her behavior was disruptive and it was determined that she could not care for herself. In 1987 she was involuntarily admitted to Bellevue, a psychiatric hospital. She contacted the New York Civil Liberties Union, who agreed to take her case. It was decided that involuntary hospitalization required that one pose an immediate threat to themselves or others and that Brown had the right to refuse treatment, including refusing all medication. She experienced a burst of fame and donations placed her in a hotel temporarily. By 1991 she was living in a group home and once again receiving disability payments. The housing first philosophy meant she was not required to participate in mental health treatment or take medication to reside in supportive housing.
Brown could not be forced to live with her family members, who were willing to have her live with them. She could not be forced to live in the home they arranged for her. She could not be forced to stay in the psychiatric hospital or a long-term care facility. She could not be forced to live in a group home, either. Of course, this differs by jurisdiction and is at the discretion of individual judges, so while Brown’s right to make her own choices was protected, other people remain disempowered by guardianships.
Until the 1990s, people deemed to be mad in Belgium could be forced to live in an asylum. People ended up living with foster families in Geel as boarders because they were legally declared insane, sent to a traditional closed asylum, and then transferred to Geel when it was determined that they were incurable. Now that the mad in Belgium have more rights to make their own decisions and have more choices, almost no one chooses to live in Geel.
As an outsider, it’s hard to understand why no one would want to live with any of the perfectly lovely host families in this very nice city. Living with a host family could easily offer more freedom and opportunity than living in a group home. Of course, the myth of Geel is an American thing and does not exist within Belgium. Thus, it would not be surprising that Geel is unable to attract new foster residents due to its former status as a colony of the unfree.
The secret to Geel’s success
Today, Geel has a successful community care program that meets contemporary ethical standards. Participants live with foster families, live in group homes on the hospital grounds, or participate as outpatients. When I visited Geel last year, I did not expect this project to spiral out of control the way it did. Ultimately, I did accomplish my original goal. I learned what allowed the program at Geel to become established and survive for so long.
The secret to Geel’s success is its history as a penal colony, which provided its leadership with stable funding and the authority to enact their visions. We bemoan that prisons and law enforcement get funding while social services are neglected. Well, that wasn’t an issue in Geel.
The family care program at Geel was a product of the same system of beliefs that led to the eugenics movement. Under this benevolent paternalism, those deemed unfit were separated from society and prevented from reproducing in a comfortable environment. Geel was one of many isolation colonies built in response to the worse conditions patients were subjected to in other asylums. Geel provided patients with what was considered humane treatment. Patients who recovered in foster care were discharged. Those who did not comply with behavioral standards were returned to closed asylums. Those who remained were able to live with families, contribute to the community, and live in relative freedom. All of their basic needs were provided for, they had access to education and entertainment, and they could remain in contact with their family and friends outside even if they weren’t allowed to leave the Colony.
Today, OPZ Geel is there to thoughtfully match each potential boarder to a host family. They have matching protocols that are flexible enough to allow participants to trust their intuition. OPZ staff support them through the transition. If a boarder and host family don’t end up bonding or if the situation changes, OPZ staff are there to re-match the boarder.
OPZ Geel has host families who provide respite care. This allows boarders to spend time with other families and gives host families the flexibility they need to remain hosts long-term.
Host families are provided with what seems like a carefully determined minimum amount of training. OPZ Geel wants boarders to live with families, so they do not want to force families to turn their home into a hospital or treat the boarder like a patient. Staff familiar with the boarder provide information based on their actual behavior in order to help them provide day-to-day support. The diagnosis may or may not be disclosed, not to minimize stigma, but to encourage an emphasis on the actual boarder they’re sharing a home with rather than stereotypes. The emphasis is on individuality and the way all of us change over time and under different circumstances.
Geel’s origins in the chaos and scarcity of the French Revolution meant it could be established quickly and with the support of locals who needed to replace lost income streams. Because Geel predates the founding of Belgium and was formalized as a Colony with the support of the first Belgian King, there has always been an established and clear hierarchy. The Belgian asylum system was designed in order to give high-ranking staff members a significant amount of autonomy within certain clear boundaries.
The fact that the entire colony was legally a hospital means there have always been day programs, medical care, and care navigators as part of the program. From the outset there were funds available for host families to build and modify their homes. The asylum system evolved without major legislative changes from the 1850s until the 1990s. By this time, the programs were so established that people worked to ensure continuity of services that people relied on, despite big changes in oversight and funding.
So here I am, encouraging you to start a penal colony in your town. I’m joking, but in certain ways, the situation we face is similar to what Canon Triest saw happening: people with intellectual and mental health issues are being criminalized and imprisoned or neglected because of lack of support. He used the resources at his disposal to provide these people with what he saw as ethical care in a safe environment, including keeping them safe from politicians and men of science who would not have viewed their lives as having any value at all. Long after Triest’s death, when institutions housing “useless eaters” were seeing their patients systematically murdered, the Colony of Geel was viewed as self-sufficient enough to be permitted to continue normal operations.
There’s a widespread idea that prisons have replaced asylums in the US. Perhaps instead of trying to establish government funded community care centers – something JFK already tried and failed at – it’s time to look at converting minimum security prisons into something more like the Colony of Geel.1 It might be the easiest way to get political backing and funding for adult foster care with the type of services provided by OPZ Geel.
I wonder what other potential we’ve overlooked. Canon Triest took a list of families that had housed students and used it to solve his problem of where to house patients while he renovated the cruel asylums that had just become part of his jurisdiction. Nothing I’ve read about Triest suggests he’s the sort of person I want to emulate. He wouldn’t be my choice for the next saint. Still, he was a man who knew how to get things done. In an era when other men in power were doing unbelievably horrible things, he might belong in The Medium Place with Mindy St. Claire.
I would not be surprised if someone has already done this. If you know, please tell me about it!