‘My Dad’s gone to Mars’ – when a star chart isn’t enough

It’s almost an affectation to say how much things have changed over these last few decades. A way of putting our hands on our collective hips and uttering the professional equivalent of  ‘When I were a lad …’, then shaking our heads in disbelief at the impact of modernity on treasured ways of doing things. Back in the good old days, psychologists were much more hands-on – demonstrating to bemused nurses how to teach an adult with intellectual disability (mental handicap as it was known) to feed themselves with a spoon.They would sit in rows of plastic seats as the live bait – Chris Cullen on one occasion – wielded spoon, semolina, and reluctant diner’s hand, in pursuit of successful launch and re-entry with payload. This would be rewarded by the delivery of a token. The nurses would hope to be rewarded by the patient chucking bowl and contents over the expert, at which point they would shuffle off for a fag break. Humiliation was at least private, if a little sticky.

army assault course

Interviews could be tough

My first job as a qualified clinical psychologist was in Bromley. It was a community job which meant beetling about the borough in my mini, visiting day centres, our service base at Bassetts, and Darenth Park hospital from which we were decanting the desolate neglectees of previous care philosophies. Darenth was a vast institution near Dartford which, when approached from the south, looked like Disneyland with its white walls and dots of spires. Inside, it was more like Colditz and, as the closure progressed, like something awful the war had tried and failed to demolish.

I was working at a smart new hostel where residents, now called ‘clients’, would have their own rooms and bedding, cook their own meals, and enjoy the liberties of an affluent middle class town. Part of my job was to work with the people who would be coming from Darenth, to prepare them for this new privileged life. In retrospect, it might have been an idea to check with the recipients of this beneficence. Three elderly women, successful graduates of the hostel who moved to an unstaffed satellite house down the road, were initially overjoyed at their change in fortune, but gradually became withdrawn, angry, depressed and hostile. They said yes, it was wonderful, but it should have happened ‘bloody years ago’, and now it was too late. A small group of men with a combined age of around 700 years who had spent nearly all their lives in the hospital, refused to engage with the new system and were sullen and negative about every aspect of it. We had forgotten, in our enthusiasm for the shiny new life we were giving them, that we had simultaneously negated and devalued the one they had before. We had to learn a bit of humility and they taught us how to see what they saw [1].

Another group of men took umbrage for rather different reasons. In expunging derogatory terminology according to Wolfensberger’s principles of normalisation, we had thrown out their social references.  This group refused to peel potatoes, make beds, or do the vacuuming because they were ‘High Grades’ and that was work for ‘Low Grades’ or, indeed, women. Quite. One of those low grades, a sorry pile of unkempt, raggedy cast-offs with contractures of his limbs and no teeth, went on to staff the day centre shop. He had somehow learned about currency and arithmetic at the hospital.  More surprisingly and to his endless credit,  he had also learned about grace, dignity  and humour in that place, and brought it to us when our limping new approach gave him the platform. We all learned about potential – with him and with others.  The man with Down’s Syndrome who made a Cinderella shift from sack of spuds to Miami Vice at his first proper party; another man with Down’s who – given the freedom to take his electric wheelchair out and about – brought traffic to a halt in Bromley by yahooing the wrong way down the middle of the high street; and the chap who finally understood that his dad wasn’t on Mars when we broke with prevailing wisdom and helped him understand about death instead. 

This was where psychotherapy for people with learning disabilities got a foothold. It happened first at the Tavistock Clinic with pioneering therapists, Valerie Sinason, Jon Stokes and others, but only by specialist referral and after a long wait. I was lucky to be working with Alexis Waitman who was heading up the Training team in Bromley. We had both been used to talking to people when they were upset and because of our backgrounds – she an ex-social worker and me an ex-nurse – we had never thought to start by asking about their IQ. For these people we found that, by accident of a few points on a scale, they could be denied counselling and instead put on a behaviour chart which focused only on what they did and not how they felt. The system manipulated behaviour while others had their distresses heard and validated. It was unfair. What’s more, it was endemic, there was no precedent, and some people were openly derisory  – apparently you couldn’t talk to ‘people like that’. There also weren’t any books to say otherwise, so we wrote one.

Bromley was ahead of its time, probably by default as it had always shipped its vulnerable adults out of the borough and so had to build something new when places began to close. Nevertheless, the small group of people there – Colin Lambert, Dr Ros Bates, Terry (whose surname I can’t recall), and Alexis – had an energy, a philosophy, and a willingness to take reputational risks in driving the revolutionary approach that saw me through the rest of my career. They were the foundation of the model of embedded and personalised services I have aimed for throughout. Connection and continuity, people first, dignity, grace, fun, and humanity. What a surprise that people whose IQ was short a few notches had those same needs. That’s ironic, by the way.

There was no irony at my next stop, the least said about which the better. I stayed a year, had my reputation impugned, received threats of litigation, set the service off-limits for trainees due to prevailing poor practice, and had to relocate the test equipment from our small department to somewhere a person unqualified to use it could not lay hands. One day, I noticed a social worker haring down the road with a client in a wheelchair balancing his suitcase on his knee. All it lacked was the Benny Hill theme. When I asked later what was going on, she said she had heard the man’s discharge had been revoked at the last minute (it happened, often for no reason) and she was getting him ‘the hell out’ before the message arrived on her desk. Not long after, I decided to ‘get the hell out’ too.

Well, didn’t you just know there would be four parts to this trilogy? Clever you – right again! Moving to Brighton in 1989 was a move from Mordor back to Middle Earth so comb your toes, check your pocketses for mystical bling, and we’ll saddle an orc to get on over there.

Brighton Pavilion

1. Fensome, H. ‘Sharing Memories‘. In Waitman, A. and Conboy-Hill, S. (Eds) Psychotherapy and Mental Handicap. Sage, 1991.

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IASSID MHID conference, Manchester

This three day event, bringing together the best of mental health and learning disability (intellectual disability) research and practice, opens on September 1st. I was expecting to deliver our presentation (Second Life, People with Learning Disabilities, and Capacity to Consent: Conboy-Hill, Taylor, and Hall) outlining the results of our NIHR funded study, but unfortunately, I am not able to attend for family reasons. Nicky Gregory, a courageous colleague, will be fronting it up for me, and hoping that all the technical wizardry does its job. If it does, she will be able to sit back and let it play. The videos will tell the story as well as anything; the narration should do the rest. But, in the event that she has to go a capella, I am certain she will receive a more than sympathetic hearing.

Elsewhere, Celia Heneage will be presenting a workshop with Nicky on group work, and Peter Baker will be talking about his work in positive behaviour support. A pretty good turnout for Sussex Partnership. Break a leg, chaps!