Towards Participatory Care

In the Democratic Alternative Intervention‘s section on building Strong Communities, we discuss humanizing the caring economy:

We need to return to our heritage of participatory direct care. We should support projects that humanize the support for our sick, imprisoned, young, old, mentally ill, and destitute. The third-party bureaucracies that we currently pay to unburden us from responsibility towards one another should be supplemented with a culture of widespread participation in direct care for each other.

This plank was inspired by an oft-overlooked idea in the political thought of philosopher Roberto Mangabeira Unger:

In principle, every able person should have a position in both the production system and the caring economy. The objective of this effort is to ensure the practical organization of social solidarity in a fashion that directly engages people in one another’s lives beyond the limits of the family.

Here’s one way to tell the rough story of this idea:

Those on the margins of our conception of “normal life” — the physically and mentally ill, the imprisoned, the very young, the very old, the destitute, the displaced — used to be wholly and directly cared for by their families and neighbors.  In recent centuries, three trends changed this: (1) old models of family (e.g. multi-generational households) and community (e.g. caring about your neighbors) began to change; (2) we developed public standards of care that cast light on the failures of local, organic systems to adequately care for those in need; and (3) we developed modern state and commercial bureaucracies capable of funding, engineering and providing care.

However, in transitioning away from a model of participatory and community care and towards an institutionalized and bureaucratized model of care — one managed by a mix of professional experts and mistreated, low-wage workers — we lost many of the benefits of the old model.  If we can develop systems that supplement the current model of care with more opportunities for community members to participate in their neighbors’ care, we could preserve the benefits of our current model while salvaging the benefits of the old.  Not only would those being cared for be helped by more organic, neighborly relationships; those doing the caring would also be served by re-engaging in our most human practice: caring for each other.  Even more, our anxieties stemming from the “abnormal” elements in our own personal and family lives would lessen as the normal abnormalities of life move out of the managed shadows. The solidarity and understanding of a shared, sacred project replaces the fear and isolation of a universal, shameful secret.

This week’s episode of the podcast Invisibilia captured a great example of how far participatory care could go.  It tells the story of Geel, Belgium, which, for 700 years, has practiced a radical form of participatory care, where hundreds of Geel families have opened their homes to those with mental illnesses and cared for them as “boarders”:

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. Today, there are about 250 boarders in Geel.

 

 

The integration of people with mental disorders into Geel society has fascinated scholars for centuries. In 1862, Dr. Louiseau, a visiting French doctor, described it as “the extraordinary phenomenon presented at Geel of 400 insane persons moving freely about in the midst of a population which tolerates them without fear and without emotion.” Nearly 100 years after that, an American psychiatrist named Charles D. Aring wrote in the journal JAMA, “The remarkable aspect of the Gheel experience, for the uninitiated[,] is the attitude of the citizenry.”

 

Early psychiatrists who observed Geel noticed that the treatment prescribed for mental patients was, in fact, no treatment at all. “To them, treating the insane, meant to simply live with them, share their work, their distractions,” Jacques-Joseph Moreau wrote in 1845. He and others advocated for that communion. “In a colony, like in Geel, the crazy people … have not completely lost their dignity as reasonable human beings.” In the next half-century, many would uphold Geel’s model as the best standard of practice for mental disorders.

The model has inspired others around the world, from Japan to the Geel House in New York. A challenge for The Democratic Alternative’s Strong Communities Project will be to find more relevant examples of humanizing the caring economy, like Geel, to incorporate into our agenda.

Read more here and listen to the full story below: