I spent the last two weeks in-and-around a care home in England that looks after people with dementia and terminal illness, and their families – including, this time, mine.
In four wings, each with 12 residents, 24/7 care is provided by teams of trained professionals who work 12 hour shifts. During the day, for each wing, three carers and a qualified nurse work continuously within yards of the residents; at night, cover is provided by a carer and a nurse.
Their hour-by-hour duties include helping people eat and drink; changing clothes and bed linen; helping people shower and clean; cutting finger and toe nails; helping people use toilets, bed pans, sanitation pads, and commodes; filling in forms; attending staff training sessions.
A lot of the time – a lot – carers sit and talk with the residents, reassure them, read books or magazines together, or simply hold their hands, or hug them.
Twice a day, it’s true, one of the nurses would tour each wing to give medicines to the residents; a few residents needed more intensive medical attention. But I reckon that ninety five per cent of this demanding, time-consuming and emotionally-draining work involved caring – not doctoring, and not ‘curing’.
In my family’s case, we saw a doctor twice during those weeks. The first was when a non-resident General Practitioner (family doctor) popped in for ten minutes, did not sit down, nor look any of us in the eye. He waved a Do Not Resuscitate form around like an election pamphlet, and then left. The second doctor, another GP, came later, at the end – as some regulation or other prescribed – to pronounce my family member officially dead. He performed this service with grace and tact.
These discordant intrusions by doctors did not matter. Those final hours were peaceful, even beautiful, thanks to the quiet, attentive and loving care of the people who surrounded us in the home.
A few hours later, when I turned on the television for the first time in weeks, it was to see the UK prime minister, in London, addressing a room full of people clad in smart suits and name badges.
Speaking in forceful, Churchillian, style, Mr Cameron declared that “we must fight dementia” and announced a £100 million global research project to find a cure. “I know some people will say that it’s not possible”, said Mr Cameron, “but I will not be defeatist. With a big global push we can beat this”.
As I wrote back in December, after the G8 Summit on dementia, the likely outcome of this so-called “race to identify a cure” for dementia will be the creation of a Dementia Industrial Complex. It will run by-and-for the glossily-clad experts in Mr Cameron’s audience – and it will do literally nothing to support the low-paid care workers that supported my family and thousands of others like it in recent weeks.
Neither patients nor carers are even represented – not at all – on the much trumpeted World Dementia Council that was set up after the G8 Summit.
It’s dispiriting, but not surprising, to witness politicians parroting the false promises of the Tech lobby. But it’s a tragedy to see that an organisation that once represented carers has jumped onto the same bandwagon.
With its Dementia Friendly Technology Charter, the Alzheimer’s Society has given its imprimateur to the implausible notion that technology – rather than the presence of human beings – is the best way to enable people with dementia to live independently.
It’s doubly depressing that the Society asked a for-profit tech company, Tunstall Heathcare, to write its ‘charter’. Write its own orders would be more accurate. It is Tunstall ‘s corporate mission that, when it comes to dementia care , we can and should, “buy” peace of mind. “Just press the button” promises Tunstall, “and one of our operators will be on the line.”
And then?
I know I’m emotional right now, but I’ve reflected on this a lot over several years and believe it has to be said: The notion that technology can substitute for the presence and care of human beings in care is not just misguided. It’s evil.
Reading Small Signals
READING SMALL SIGNALS
We’ve invested huge resources over the ages to keep the man-made world, and nature, separate – but there are signs everywhere that those those priorities are changing. Working through the consequences of that is a challenge for us all.
Many signals of change are small on their own but, taken together, tell a new story. There’s the new scheme in England, called Hummingtree, that connects office-bound workers with living systems by means of a ‘wild mirror’; each workspace is twinned with an equivalent patch of forest that’s being regenerated. In gritty Oakland, I learned that urban forests, living walls, and green roofs are being used to filter air, water and soil in and around its ports. I also saw the ad for a ‘wildflower farm apprentice’ to help a social enterprise trade wildflower seeds; that kind of work didn’t exist a few years ago. Neither did de-paving, food co-ops, river restoration, edible forestry, or pollinator pathways – but examples like these are cropping up all over. At multiple scales, this combination of social and ecolgical innovation adds up to living concepts of infrastructure.
The how is as important as the why. Back in England there’s the small farm that has 8000 landlords. Shares in the farm cannot be traded on the open market, but this shared ownership model enables the community to share responsibility – with the farmer – for growing food. This approach would be a great addition to a project I visited in California called The Food Commons. Launched at the epicentre of global agribusiness, this inspiring prototype combines social, political and technical innovation.
Other signals of change are so scattered that they can go unnoticed. In China, so-called ‘battery-bikes’ are outselling cars by four-to-one – but this story is missing from Western media. In The Two-Wheeled City I argue that a system-wide phase-shift in transportation is gathering pace. In Belgium, a project called Mobilotoop, about cloud commuting, is further evidence of an asset-light mobility ecosystem in which networks are used to share equipment and infrastructure. (I describe other ingredients to help a cycle commerce ecosystem flourish in Cycle Commerce: The Red Blood Cells of a Smart City).
Some signals of change point in contradictory directions. In Ethiopia, an inspiring social enterprise called Sole Rebels – the world’s first Fair Trade shoe brand – employs and trains highly marginalized people; uses organic and bio-based materials; and obtains its leather from free-range cattle herders. But Sole Rebels must compete with a vast new project called Shoe City, also in Ethiopia, whose 200,000 guest workers are paid ten times less than workers on China.
Two recent texts of mine – A Whole New Cloth: Politics and the Fashion System, and Keep Your Stuff Alive – explore this core dilemma for fashion: despite more than 400 eco labels, an incremental ‘do less harm’ approach has addressed the symptoms, but not the principal cause, of our difficulties – a perpetual growth economy.
Some brightly flashing signals divert our attention from more important developments. Last December’s G8 Dementia Summit, for example, grumpeted the fact that one hundred million pounds will now be spent in a race to identify a cure or a ‘disease-modifying therapy’ for dementia. In The Dementia Care Economy I argue that the likely outcome will be the creation of a Dementia Industrial Complex – and the mass production of un-met expectations. Recent personal experience has reinforced my strong belief that the presence of human beings – not labour-saving technology – should be the priority.
The most promising innovations in the ways we care for each other – from child care, to dementia support – involve collaborative service networks. These empower family members and volunteers to work in equal and reciprocal relationship with professionals. In a conversation with Michel Bauwens, founder of the P2P network, I learned that the rise of social co-operatives represents a new frontier in the shifting boundaries of public, private, and commercial spheres. In global law and governance, too, the concept of Buen Vivir or “good living” manifests a political concept of citizenship that includes all life, not just human life.
Although, taken together, these signals tell a new story about where we’re headed, the story remains stubbornly obscure. In The Desert Of The Real – my contribution to the Puma Sustainable Design Lecture series – I argue that we need to cultivate greater perceptual diversity, and new ways of knowing, if we’re to meet our ecological responsibility towards future generations.
DOORS OF PERCEPTION TALKS AND WORKSHOPS
My talks and Xskool workshops – which you can read more about here and here – explore the above questions in unique contexts: What are the key social-ecological systems in this place? how night one design in them? and, how does one get started?
CONTACT
Contact me (John Thackara, Doors of Perception) by email at john (at) doorsofperception (dot) com
Blog doorsofperception.com
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