More than a flight of fancy
Petagma celebrated its 20th anniversary in November 2022 and I, having been involved in the establishment of the first Supported Living project in Greece from the outset, was honoured to be asked to contribute to the celebratory Symposium. I’d been asked to help tell the story of the organisation’s development and, subsequently, offer thoughts on the opportunities and challenges prescient for people with learning disabilities in Greece (and the wider world) and small, values-driven agencies like Petagma.
In compiling these reminiscences I’ve been struck by how much I’ve learned along the way and by how much of this has been achieved through tenacious trial and error. I can be a bit of a ‘stuck record’, opining the merits of addressing everything as a journey where the general direction has been discerned. Suffice it to say that reviewing Petagma’s progress has only served to reinforce my confidence on this point.
I’d arrived in Athens in the early hours of the 11th September 2001 and sat as dawn broke on the harbour-side at Piraeus awaiting the first ‘Dolphin’ of the day to Aegina where I was to be met by Geoff Warner – an Englishman who, having relocated to Greece, was engaged in promoting Teaching by Systematic Instruction (TSI) and Supported Employment in Athens. He had contacted me ‘cold’ some week’s earlier. “There are families here who are worried about what will happen to their ‘children’ as they get older, frailer, and eventually die. I’ve told them about what you do and they’d like to meet you. Will you come?” Never one to turn down an adventure… It was, given what transpired in the US that morning, an unforgettable day, the destruction of the Twin Towers.
Over the next couple of days I met with the families; spent a little time with their sons and daughters; visited the schools, vocational training and day centres they attended; and met some of their professional ‘allies’. Throughout, I was concurrently sharing information about our work in the UK and exploring and ‘researching’ it’s relevance and transferability to the Greek environment. I’d engaged in enough international problem solving to know that, as an incomer, one is a ‘lemon’ for a long time and hence it’s irresponsible to ‘prescribe’. It didn’t take long for me to appreciate that, while I met a small coterie of optimistic go-getters, the majority of people I met during this first visit (and for many visits until ‘the pudding had been proved’) fell into the “this is lovely – but this is Greece” brigade of worn-down pessimists.
All I could offer was an invitation for a delegation of parents and supportive professionals – like Penny Papanikolopoulos – to visit us in the UK and draw more informed conclusions; progress would only be made via their passion and entrepreneurialism. While it was important that the delegation could gain an understanding of the practical machinery of our approach to support, I was most concerned that they should be ‘baptised’ in the purposes and principles that we tried to ensure permeated everything we did. While I now appreciate the importance of this intellectually, it was at that time much more a gut thing. Implicitly, I knew that, once you have clarity about purpose and inalienable principles, you can problem-solve and design in any circumstances.
From the outset, leadership of the association has always rested with Koula Iouannou and, in the formative years, Penny P. However, a key outcome of the visit was the emergence of a coalition of families who broadly envisaged something palpable and achievable.
After this, things gathered momentum. My subsequent visits to Athens focused upon planning with family leaders, conversations with potential funders, and workshops with the wider swathe of families and their allies. Koula, Penny and their small project team worked tirelessly strengthening belief, identifying property and resources, influencing policy makers and, in due course, drafting and piloting the legislation necessary within a Napoleonic system of governance.
The design of the support arrangements for the initial projects was based upon the Good Life plans that the families asked me to develop for and with each of the individuals. I chose to undertake this task as an educative process for all involved, in the hope and expectation that values and processes underpinning Good Life planning would get into the bloodstream of every participant, establishing a robust norm.
The Petagma Proposition
Petagma is rooted in a coalition of families whose common goal is to ensure that their disabled sons and daughters should secure and sustain good lives in the present and that these can be maintained subsequent to their parents’ deaths.
With hindsight, it seems that the simple proposition I placed before them – via their visit to the UK, a number of subsequent largely experiential workshops, and a plethora of unchoreographed interactions – went something like this:
The Global Challenge
20 years on Petagma has, within its sustainable resource envelope, set the gold standard in securing and maintaining supported living services that are a true shared enterprise between families and their regulated agency that is solidly founded upon love and relationships.
Yet, in comparison, much less progress has yet been made in respect of building the lifelong, intentional relationship networks that can ensure the attentive care and advocacy that mum and dad devote unconditionally after they have passed.
It isn’t as though that agenda has been ignored. I introduced Al Etmanski and Vicky Cammack (PLAN) to the families relatively early in the process – indeed Al made a video contribution at the anniversary Symposium. What I believe we are learning, in Greece as in much of the rest of the ‘consumer’ world, is that, engulfed as we are in the exclusively transactional world of all-embracing satisfaction through commodities and services (as I say, not just a Greek Myth!), our innate competences in interdependency, reciprocity, and mutuality are dwindling. In short, we are losing our abilities to function as social beings as the environment in which most of us plough our furrow demands that we devote most of our attention and commitment, not to each other, but instead to the grind of achieving enough disposable wealth to fulfil our duties as consuming rather than caring and socially contributing citizens. Put simply, we don’t any longer have as much faith in relationships and integrity. We are conditioned to mainly place our trust in contracted transactions with their associated paraphernalia of customer services and complaints procedures.
Concurrently, the neoliberal hegemony, constantly refreshed by the consumerist media hot-tub which entices us to be mindlessly entertained, structures everything to cast us as competitive and acquisitive individuals, in essence, as Thomas Hobbes ludicrously asserted, at war with each other since time immemorial. George Monbiot has described our time as ‘the age of loneliness’ and it seems to me that, in my 74-year lifespan, I’ve been witness to a quickening and exponential loss of social connectedness and a grotesque celebration of wilful self-isolation and pseudo-connectedness via the consumption of entertainment and remote or individualised diversions and distractions that can be exceptionally addictive and supersede inclusion and relationships. Monbiot asserts that, “we have destroyed the essence of our humanity: our connectedness”. (in How Did We Get Into this Mess? 2014)
In my estimation, the first step to, ‘getting out of this mess’, is acknowledging the mire in which we are sinking. Unfortunately, at scale, that does feel like swimming against a tsunami! But, aware citizens can make choices!
Relationship network building is not so difficult if we remain intentional, focused and work on our own connections. Greece, fortunately, is not in my experience so far into the slough of consumerist self-exclusion as we are in the UK. Nor has Greece, although largely not for good nor intentional reasons, created the consumerised dependency upon transactionalised public services that characterizes the UK’s dysfunctional version of a welfare state.
Relationship Network Building, the pursuit of Inclusion, and Good Life Panning are symbiotic. Intentionally pursued, each informs and drives the other; the former two ensuring that life is not reduced to what one of my colleagues describes as a ‘gilded cage in Serviceland’. While one member of a support team may take the lead in building and curating a network, all staff need a grounding in the relevant principles and practices at induction, with ongoing coaching and revision, in order that everyone brings their talents and assets to the central work of helping the person they are assisting to enjoy an abundant and connected life. Dorothy Day so aptly described our essential and common human condition more than a century ago,
“Neither human existence nor individual liberty can be sustained for long outside the interdependent and overlapping communities to which all of us belong.”
Working in this way does not always come naturally to care and support people who require training in and subsequently, in the context of a living Good Life Planning process, attentive coaching, supervision and revision. Over the years, developing strengths-based approaches in many jurisdictions, we have observed that while getting started can be trying, once established opportunities and benefits burgeon exponentially. A starting point is learning that we, a service providers, are not from “The Bureau for Broken People” but instead from the “Centre for Gifts and Giving”. John McKnight unpacks this fundamental truth in this clip, https://www.youtube.com/watch?v=-5yVil1Qy2o
And so I concluded my presentation with a simple observation. I told my Greek friends that they shouldn’t go along with the transactional, consumerist model of human services that is presented as, in effect, the ‘only way’ in Brussels, London and Washington. The transactional model has failed and has been shown to be concurrently unethical and unsustainable. Greece, and many other historically less affluent societies, can choose to take another course, a course that has underpinned the success and resilience of humanity over many millennia and has provided the impetus and resolve that shines bright in Petagma. I proposed that Greece should commit to addressing how true CARE is achieved through its natural manifestations: RELATIONSHIPS, CONNECTIONS, FAMILIES, and COMMUNITIES. In this construct the role of the State and Professionals is supplementary and complementary: helping citizens, families and communities stay strong and delivering those specialist gifts that are beyond the remit of the relational world. The audience response implied enthusiastic agreement!