1: Going to Geel
Finding an alternative to family caregiving - adult foster care
Despite the carrots pushing us to provide care, there is always the very big stick of what could happen if we don’t provide care. We’re motivated by love, devotion, faith, values. We’re motivated by nightmares of a government nursing home, withering away in a squalid apartment all alone, going hungry on the streets. As Evelyn Nakano Glenn demonstrated, both paid and unpaid caregivers are Forced to Care. Glenn notes how:1
“two areas in which the state historically articulated and enforced women’s obligation to care: marriage and family law, which codified wives’ duty to provide domestic services, including nursing care, and social welfare provisions for dependent disabled individuals, which presumed that family members, particularly wives and mothers, had primary responsibility for providing unpaid care. Despite nineteenth- and twentieth-century modernizing reforms, law and social policy have continued to affirm the principle that the family, and not the community or the state, bears primary responsibility for meeting dependency needs, and that family members (parents, spouses) are obligated to provide care for other family members.”
When my caregiving responsibilities ended and I started visiting different caregiving organizations in North America, my plan was to develop a list of best practices from successful organizations and help spread them. Soon I became familiar with Asset Based Community Development and realized there was no need for me to develop another framework.
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My plan turned out to be obsolete, but I had become entranced by getting to spend time with caregivers. Listening to their stories and joining them as they went about their days, I became fascinated by – perhaps obsessed by – how caregiving could have become a crisis.
Caregiving is arguably what makes us human. It brings us beyond despair and to the sublime. It forces us to endure tedium and find an endurance beyond our deepest exhaustion. It is essential to the great drama of our lives.
Yet somehow we have come to live in a world where this essential part of the human experience has become something that appears to be unexpected. The required trajectory of a successful and responsible life does not allow for it, aside from the occasional two-week leave. Systems are created as if it’s an aberration, rather than the obvious accompaniment to being a species in which one in every five of us is disabled and nearly all of us will be disabled at some point in our lives.
I wanted to learn what care work within the home looked like in previous centuries and make sense of how we’ve ended up where we are today. I wanted to study how the built environment enables or disables us, altering the type and amount of care required. I wanted to study the lived experience of caregivers in countries providing dramatically different medical and social support.
Instead, I found myself at the shrine of an Irish princess and became obsessed with unraveling an ancient conspiracy. Then, I visited my parents and realized all the strange things I’d discovered abroad paralleled the history of my home town.
In the process, I learned some things about what happens when family caregivers step back and let the void rush in.
The magic medieval city of Geel
I don't know when I first heard about Geel, a Flemish city in Belgium. It could have been nearly twenty years ago, when I was studying at the New School. RD Lang and the antipsychiatry movement were popular topics there and Geel is its darling.
I didn’t have internet access at my apartment, so I watched most of the DVDs in the New School’s documentary-heavy library.2 One of the DVDs I brought home was about an experimental housing program for people who had been institutionalized for mental illness3 and now lived as equals with former orderlies. It encouraged viewers to embrace different ways of experiencing the world. It inspired me to go back to the library and pick up several books I’ve long forgotten the details of. One of them, ostensibly a memoir by a schizophrenic woman, had a chapter-long explanation of the artistic potential of poo, which I read aloud to my friends. Once my attention had shifted from earnest curiosity to morbid fascination I lost interest.
Geel kept coming up over the years. There was a flurry of media attention in 2000, leading to a long tail of references. In the era of LiveJournals, personal blogs, and proto-social media, it would be name checked while bemoaning the state of mental health care. Geel is a magical place in Belgium, where people with mental health issues live in the community with host families. While the rest of the world was cruelly locking away the mad, Geel accepted them. It was a place where there are no labels or limits, people are accepted as they are.
References to Geel always sounded too much like one of those “genius seven year old child solved the great Pacific garbage vortex with parts he put together in his garage” headlines that turn out to be a crock. My curiosity was not piqued.
Then I showed up at Glenora Farm, which provides foster care for adults with intellectual disabilities on Vancouver Island. Adola McWilliam, the co-founder, wasn’t a starry-eyed reporter projecting her fantasies onto something based on a three minute news clip. I wanted to spend a year listening to her – about the Camphill Movement, about her life, soaking up everything she could teach me. When she brought up Geel after telling me about how she struggled to keep Glenora Farm operating, despite having the support of local politicians and an eager waiting list of families, I knew I needed to go to Geel. I wanted to know how they managed it, logistically and legally.
Orphanages have come to be seen as so inherently cruel that they essentially don’t exist in North America and Europe, so I couldn’t understand why it’s the default to place adults who need care in institutions. I wanted to know how adult foster care could exist in this one place in Belgium and yet not be something people in other places would even consider. When I mention “adult foster care” people get the icks. I wanted to know why it seemed creepy to be willing to care for an adult who was not a relative, while it’s easy to understand why someone would take in a child.
I was also curious to see what support was provided to foster families. I longed for something to point to when arguing for support of biological families providing similar types of care. I would love to see a caregiver support program that isn’t a motivational text message or a calendar app. I’d love to see funding based on services provided, rather than treated as charity.
Planning my trip
I got myself an invitation to stay in the home of one of the psychiatrists at Geel’s mental health center while she and her family were on their summer vacation.4 She kindly offered to organize a tour of the hospital for me. This was especially helpful, since the museum dedicated to Geel’s foster care program is only open to accredited researchers on group tours.
Once my flights were booked, I finally looked at their website. It was underwhelming. It’s what you might get if you asked AI to build you a website for a modern mental health care center. That is to say it looked like every other website, not the website of an organization people on the other side of the world discuss in a tone of hushed longing.
While OPZ Geel is famous for the foster care program, the majority of patients are out-patient residents in their catchment area. They provide sheltered workshops, day programs, and standard treatments. There is a hospital with 120 beds, 75% of which are occupied by chronic psychiatric patients.
The care they provide is based on the Assertive Community Treatment Model (ACT), also known as the Wisconsin Model, since it was developed in Madison in the 1960s.
ACT “brings support to the patients where they live instead of requiring the patients to visit a hospital or clinic. Mobile teams of doctors, nurses, social workers and occupational therapists go to the patients' homes and administer medication, check to be sure bills are getting paid and work with landlords to smooth out any problems.”5
There are also two housing complexes on the grounds of the OPZ, which provide homes to 75 people. In both buildings each resident has their own room.
The original building, PVT1, has shared apartments. There are three apartments with ten residents each. This building is for people with both a congenital intellectual disability and a psychological vulnerability. Each apartment has a vibe.
The newer building, PVT2, has three shared apartments with 10-15 residents each. There are also four studio apartments with kitchenettes, which contain a microwave. An equipped kitchen and living room are included in communal spaces. This building is for people without intellectual disabilities. Each apartment (and the studios with communal space) has a vibe.
The units in both buildings come furnished. Residents can customize their spaces “in consultation with the supervisor, taking fire safety into account.” Both linens and food are provided by the OPZ, although residents are not required to eat the food provided. There are set visiting hours. Some shared units have gotten permission to have a cat. Both buildings share a management committee with a resident representative from each building. The cost of room and board is the responsibility of the resident, while the supportive care elements are covered by insurance.
Both PVT buildings operate with an emphasis on recovery. This includes the use of:
Systematic Rehabilitation-oriented action (SRH),
Dialectical Behavior Therapy (DBT),
Solution-oriented working, and
the Došen emotional development scale.
In 2000 there were 570 boarders. Today there are 125, nearly all of whom are elderly and have been in the program for decades. Most of them have an intellectual disability. Anyone with a mental illness must be and remain stable to remain a boarder. As their care needs grow they are being moved to nursing homes.
Yes, the city of Geel, where people with disabilities are fully integrated into the community, where there is no stigma and no labels, has both people in long-term in-patient care and in nursing homes. The nursing homes do not have good reviews, although they don’t seem any worse than your average nursing home. I just…expected something different from this shining city on the hill.
I didn’t expect it to live up to the hype, I just expected it to be, well, different.
Your reputation precedes you
The story of Geel is a collection of myths spread by people eager to see their vision of the world in reality. In a representative article published by Columbia University by their Director of the Global Mental Health WHO Collaborating Centre, we are told that in Geel boarders are fully integrated into community life, there is no stigma or NIMBYism, and there is no desire to change or cure the mentally ill. And, alas, it is one-of-a-kind:
“Beginning in the 14th century, pilgrims traveled to Geel seeking Dymphna’s healing power, and when the church beds were full, community members opened their homes. It was an honor. The tradition stuck.”
The New York Times explains how records show the program began in the 13th century in an article that calls Geel “an emblem of a humane alternative to the neglect or institutionalization of those with mental illness found in other places.”
NPR tells us:
“For over 700 years, residents of Geel have been accepting people with mental disorders, often very severe mental disorders, into their homes and caring for them. It isn't meant to be a treatment or therapy. The people are not called patients, but guests or boarders. They go to Geel and join households to share a life with people who can watch over them.”
“This provokes an obvious question: what was the alternative to the asylum? We’ve used the story of Geel to answer this.”
The Guardian published a piece that was less subtle, with the headline:
“Australia can learn from a Belgian town where people with mental illness live with dignity in the community: Here, they are often locked out of employment for life and left to scrape by on welfare”
The author, whose father committed suicide and who had once checked herself into a mental hospital for severe depression, implored us:
“Just imagine a place where foster families take people with a serious mental illness into their homes instead of putting them in hospital. Just imagine that in these foster homes those individuals become functioning members of the family, and that very few of them ever return to a psychiatric institution. And just imagine this system has been operating successfully for more than 600 years. For generations a small city in Belgium has been practising a radical system of community mental health care.”
Broadview tells us Geel has “has a radical approach to mental illness” and “pioneered revolutionary health care” with a “remarkable social psychiatry program”.
Once again the author sees Geel as the manifestation of something she desperately longs for:
“I dreamed of a place like Geel long before I knew it was real. Through all the time I’d spent in Canada’s psychiatric system — years of white-knuckling it through months-long wait-lists just to get an intake appointment, late nights in the ER with panic attacks that wouldn’t stop, wards with doors that lock behind you with a gut-wrenching click — I’d tried to imagine how it might be different. I fantasized about a system where care is ongoing and mental health isn’t treated as a binary of “fine” and “crisis;” where patients are considered complex individuals rather than a list of dysfunctions; where clinicians understand the difference between staying alive and actually living.”
“Managing the distress caused by mental illness is hard enough, and that difficulty increases exponentially when you have to exist in a world that fears and hates your illness. To fix all that, you would have to change society entirely, but that’s exactly what Geel has done.”
Oliver Sacks wrote:
“Geel is a unique social experiment – if one can use the word “experiment” for something that arose in so natural and spontaneous a fashion.”
The CBC tells us:
“There is nowhere on earth quite like Geel.”
Well, I was going to find out for myself soon.
The Canadian government’s Rapid Housing Initiative will create a set of pre-approved building plans, allowing housing to be built faster. The big question is: will they meet universal design standards?
This was in 2007 and I struggle to imagine how I wrote my thesis without home internet access. My cheapness and desire to avoid administrative tasks trumped my desire for internet access.
I’m about to use quite a collection of offensive language. I try to use the generally preferred terminology used by those affected by an experience. There is, of course, no universally preferred term. In terms of mental illness, I generally use the word mad, a la Mad in America. I also use historical terms, most of which are incredibly offensive. I’m attempting to use these terms when they are relevant to provide historical context. The meaning of terms is not always interchangeable and replacing outdated terms with modern equivalents can mislead. My intent is not to offend, although I am discussing a deeply disturbing history and sharing information that is inherently offensive.
I don’t have many skills in life, but I am very good at getting myself invited to stay with people. I am essentially a professional house guest.