The Canary in the Coalmine: personalisation, deinstitutionalisation & communitalisation

The following is a piece of imaginative writing, with no recourse to the historical facts. But I would ask the reader not to let the absence of fact get in the way of the story, because ‘non-fact’ should not be confused with fiction, this is no more or less than a story…in that regard it is both really real, and truly true.

Recently the Canary Times reported on the hidden dangers of ‘independent living’ for once institutionalised Canaries. They noted how well intentioned professionals have been endeavouring to shut down old institutions/care homes/sheltered placements and to support individual canaries to live in the ‘community’. The article interviewed ten individual canaries; all who reported feeling isolated and disconnected from the wider ‘community’. The article was entitled: ‘State fails Canaries: Independent living = lonely living’.

Squawk’s story was one of the more heart rending of those shared by the interviewees. Having spent his younger years in the mines and suffering irreparable lung and brain damage, he was institutionalised for over 20 years. After two decades of living in a ‘unit’ he was told it was closing down, and that he was moving to live in a community house. He moved to live with three other canaries in a rented house in a neighbourhood, far from the institution and the mines where he had spent his first 20 years – first as a chick in the original neighbourhood near the mines where he was raised and then as a ‘prophet of doom’ – in the belly of the mines.

Within days of arriving into the neighbourhood where the ‘community house’ was located he experienced a spate of very serious physical and verbal assaults that resulted in hospitalisation and a deterioration of his mental health. While he remained clear on what a ‘good life’ would look like for him, he was unconvinced that a good and competent community existed at the end of that rainbow. Squawk had this to say:

“Years ago they brought us down the mines and let many of us die, then they found a conscience and started using respirators to resuscitate us before the point of no return. That’s my story; I’m the comeback canary! Then they put us in institutions to deal with our ‘funny behaviours’ most of which were actually caused by the gas in those mines. Now they tell us we are free, free as a bird, to live independent, integrated, normalised lives. But we are now in a new mine, exposed to a new gas, a social gas, called ‘isolation’ that leaks profusely, filling the social voids (loneliness) that exist all around but especially in a our neighbourhoods. Sometimes those gases are toxic, and that’s when you get hate crime.”

The practice of using canaries as early warning devices in coalmines was phased out, at least in the U.S. and the U.K., by the late 20th century. But at its height the practice saw the consequent deaths of tens of thousands of these beautiful birds.

Some of the other canaries interviewed for the article recalled the days before the ‘phasing out’ when animal rights activists and right-minded people more generally created enough of a hue and cry to finally end this cruel practice. As canaries grew in power and various state legislators took up their cause, state inquiries followed, academics wrote learned treatises on the matters at hand, and the nuances of the underlying issues; three additional new bodies of professionals emerged, one tasked with the job of lobbying for greater reforms, the other to capacity build canaries to more effectively interface with Government and the Corporate Sector on consumer rights. Third were professional helpers who conducted needs assessments.

Polly the oldest of the canaries interviewed for the article resides in a supported living unit; she commented on how

“each assessment they carried out always concluded that what canaries needed, were more of their professional services. It got to the stage where my friends and I lost track of all of the diagnostic labels, it was as if the remedy was defining the ailment and not the other way around. Sometimes I wondered who needed whom? Sometimes out of pure boredom we used to compete with each other to see who had the most labels and who had the worst of them. It became like a reverse beauty contest where the most deficit won.”

Polly went on to say:

“over the years I moved from being a canary to being a client, then to being a patient, then an end-user, now it seems I am an expert by experience, and I am being asked to sit on various committees to advise them how to be better paid experts, I get travel expenses and nice lunches, which is nice…. I suppose.”

Still the article suggests a significant minority of canaries are arguing on the now familiar self-advocacy platform: ‘nothing for us, without us, is about us’. They feel under represented. Tansy, another of the interviewees, was a prominent voice for the movement in the 60s, she told how they didn’t just fight capitalism, they fought consumerism.

“If you want to see big institutions go to the Soviet Union, we were fighting systems that commoditised people, places and ecology. It seems of late we Canaries have become a commodity, or at least our needs have. As the great Industries of times gone by feed on coal, it seems our service based economy feeds on needs, as Iron Ore is to the steel industry, so needs are to the helping professions…they need our needs, this is the battle ground, and it is a wholly political issue.”

The article sought comment from the Minister for Canaries (who is not himself a Canary). While he was not available to comment a spokesperson had this to say:

‘Canaries like Polly have become politicised, they fail to see the progress that successive governments have made on these issues, and the benefits that industry reforms have brought about. The current administration stands behind its exemplary record on the deinstitutionalisation, and personalisation. Canaries have a right to live independent lives, and fringe minority groups with no political mandate should not claim to speak for these individuals when the evidence speaks for itself, people do not want to be in institutions, they want to live in communities.’

Interviewees were all in agreement that deinstitutionalisation and personal budgets are fundamental good things, indeed they are essential, but they are not sufficient. In responding to the spokesperson’s comment Polly simply pointed out:

“Canaries don’t just want independent lives, they want interdependent lives.”

3 legged stoolAs this debate gathers pace I am noticing various sides taking pot shots at personalisation and deinstitutionalisation. This makes about as much sense as critiquing the remaining two legs (personalisation and deinstitutionalisation) of a three-legged stool, instead of replacing the missing third leg. The third leg being community.

But that third leg is perhaps the most important part. Deinstitutionalisation and personalisation, while essential, will never be sufficient without communitalisation. If ending loneliness is your question, community building is an essential part of the answer. Just as with canaries, providing lonely people with professional services and programmes is no substitute for a connected and mutually supportive community. Resuscitating canaries is no substitute for returning them to the jungle, or at least changing the conditions. And aggregating people in programmes in accordance with their needs with others of the same needs (analogous to resuscitation), is no surrogate for supporting people to have a life of their own choosing. Neighbourhoods provide us the perfect context for this and Asset Based Community Development provides us with a rich perspective that illuminates the path ahead. Community Building provides us with the practical steps to make actionable change on the street where we live.

Cormac Russell

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