Dear Bridget,
My goodness! I feel sorry I never picked up this article when you initially dug it out. I can only say we got distracted with other discussions. Thank you for having the foresight and thoughtfulness to make the effort to give me another chance to read it.
Resonances? Yes, to the core of our lives, our blessed lives.
John Casson, through words and articulation I don’t have, quite simply nails it here. In a world where we constantly fight against a tide of ‘professionals’ deploying the latest jargon filled approaches based on the values and demands of their puppet masters, this is indeed refreshing. As refreshing as the wind and waves on Kiloran Bay on a bright spring afternoon or the cool, clear water of the island’s lochs and streams.
My feeble attempts to explain the virtues and gifts brought to our lives by Andy, often flounder beyond the claim that he is almost certainly the best human being I know. Although in an ideal world it would and should be unnecessary, the struggle for us (and so many others) is in getting across the depth and brilliance of his way of being, all that he brings to life. His care and support needs don’t even begin to define him, and yet, for so many that is overarching, and the only issue they see.
Andy is a pure human being in the sense that he is not tainted, even one bit, by the greed and deceit of what now seem to be the prevailing drivers of our modern world. What you see with Andy is what you get, and this is not an attempt at a simplistic platitude. No, on the contrary this is a reference to his remarkable quality of living in the moment, in an awakened state, so rare in what we have all become. Honest and forthright always. Never hidden agendas or lies. There is a word that comes from American slang I think, that is so relevant in our lives. That word is ‘fugazi’, and for me it encapsulates better than any other word the way Andy is treated by authority and service providers. It is also a concept of which he is personally bereft. ‘Fugazi’ refers to’ pulling a scam’ in slang, but also perfectly describes the duplicity of the policies and practices that so limit and undermine his way of being.
Over 30 years in social work I saw multiple changes in service provision and ethos that were ‘fugazi.’ ‘Care in the Community’, the’ Same as you’, a ‘service without walls’, ‘person centred’, ‘getting it right for every child’, ‘named persons,’ ‘care commissions’, ‘inspection teams’, ‘re- ablement’…….. the list is endless, the purpose and effect the same in every single one. The kernel of an indisputably good idea is used to shrink and change services and supports. The devil hidden in the detail. This approach has ended the day centre service for adults with learning disabilities, forcing users to walk the wet streets of the UK, attending short activities if they exist, if they cater for those with disabilities and if they can afford them. Closure of the physical day centres removed social circles, destroyed friendships, ended access to a secure, warm, safe environment that also gave respite to carers or allowed them to work. In effect, in many cases, it removed the whole focus of people’s lives under the ‘fugazi’ of some liberal sounding buzz words. Not everything was great about day centres but my goodness they are missed and leave a huge unfilled gap in the lives of so many, undoubtedly affecting well-being. The emphasis used to be on training- a get ready model- applied indiscriminately in large dollops to the lives of so many to whom independence and employment would never be possible. A move to a support model to maximise potential was perhaps a tiny step in the right direction, but the principal goal was always aimed at making people conform towards the values of capitalism and independence, of ‘freedom’ to be the same as all the other clones.
Andy is very autistic. Conventional social interaction is a huge challenge, driven by half true mantras – oh you need to mix, conform to social norms and niceties, it is literally rammed down the throats of autistic people by non-autistic people who know best. Crude, one size fits all solutions are produced from a bag of tricks developed by more non-autistic people – oh welcome to your new school. Oh you are autistic? That’s ok we have ear defenders! If this sounds cynical walk a mile in an autistic person’s shoes and see.
To truly be allowed into Andy’s world, leave your theories and stereotypes at the door, and be led by him on his terms. This will involve patience and time, watching and learning, caution and respect. Do not attempt to solve the problems you perceive to be there. Do not impose your values and expectations. Intervene sparingly and when invited. Don’t judge, rather try to understand. Do these things often and carefully, set aside time to be with an autistic person, impose no agenda beyond a (fleeting) connection. Then and only then might you be rewarded with a connection and sharing of an experience that is beautiful, pure, challenging and restorative. Persist and you may begin to break out, even temporarily, of the programmed and restricted lives we sleepwalk through. This path to love, peace and fulfilment is widely available when we open our eyes to it. When we pay attention to the living prophets among us. Try it and it might just change your life. Therein lies one of the problems of course, people don’t want to change or give up their addictions to material possessions, status, problem solvers, providers. Most of our closest friends and family have never been able to interact with Andy on a simple basis, sharing his ways and preferences. They ask what to buy for gifts for him and locked into the conventional ways, invariably generous amounts of money arrive in Andy’s bank account. It means less than nothing to him, always has, always will. Ask for their time to be spent with Andy, just a little, but consistently and they run a mile from the best version of human they may ever encounter.
I.B.A.
Note: this blog was inspired by an article from The Tablet Lecture 2023, shared by Bridget & Jonathan when a guest in their home recently.