The full panoply

A rare post. I’m on leave for a week. At home. Writing what I’m calling ‘book 2’ about families with disabled children (a contracted gig). This has involved sifting back through time, space, context, hisory, stuff. I kind of got stuck revisiting the documentary The Silent Minority made by Nigel Evans in 1981. About St Lawrence’s Hospital, Caterham and Borocourt Hospital near Reading. Long stay institutions for learning disabled children and adults.

We moved near to Borocourt Hospital in 1982.

Sun drenched summers, fun and laughter. Lager and black booze filled evenings and country pub lock-ins. A different terrain to our Southend childhood. Borocourt standing to attention faintly in the background. Carelessly, thoughtlessly ignored. A magnificently austere red brick gothic building. A place that almost bothered me. Borocourt people muttered.

Nigel Evans is someone I wish I’d met. The humanity and humour he captures in this documentary alongside footage that almost demands a trigger warning before viewing is extraordinary. ‘Inmates’ offer warm, heartbreaking and thoughtful commentary:

Perhaps (I dunno, I found it all beyond moving, harrowing and devastating) the breathtaking stomach punch was when staff noticed that Terry Green was trying to move the wheels of the chair he was sitting in but couldn’t quite reach them. They sorted a different sized chair (temporarily) for him.

Evans describes how

After 40 years in bed, 10 years on a bean bag, Terry Green takes his first inching steps towards independence. For decades the full panoply of the medical profession has tripped through this ward and nobody had the wit, the initiative or imagination to give Terry this opportunity. This kind of neglect invites a whole new definition of the phrase ‘mental handicap’.

No wit, initiative or imagination… The full panoply of the medical profession.

I had to google ‘panoply’. It means ‘an impressive collection’. My respect for Evans speaking these words grew exponentially. And, with a bit more digging, I found out he did some fudging in terms of gaining consent for the film (according to the enraged health boards of Surrey and Reading). It was in the public interest he said unapologetically.

It was. And it is. We have a public and unassailable record of the treatment of learning disabled people in the 1980s.

Today further details of the latest (now already dated while still not published) Leder annual review were leaked by the Health Service Journal (@rebeccasmt). The Times did a piece on Sunday (@RosamundUrwin) highlighting the lowlights. The HSJ offered the 12 recommendations with commentary.

The report documents the usual shite. 38% of deaths haven’t been allocated a reviewer, consistently dire premature mortality rates and more. The recommendations are truly grim. And include a call for guidance that ‘learning disabilities’ should never be an acceptable rationale for ‘do not resuscitate’ or used as the underlying or only cause of death on a death certificate. Forty years after Nigel Evans called out the medical profession for its inability to be human.

With unexpectedly fab weather and ‘holiday’ time on my hands I’ve reclaimed a patio area Rich built in the corner of our garden 15 odd years ago. A bit of ivy and other weed/rubbish clearance and I’ve ended up with a small, perfectly formed, shaded outdoor office space to sit and work in. The main tree, a Canadian maple we were gifted as a sapling from a garden across town, has in the intervening years grown to form a canopy of brilliantly bright leaves merging with an overflowing grapevine from next door.

This has distracted me this afternoon. My brain scrambling, jumbling and stumbling over the full panoply, the ‘impressive collection’ of people who still, 40 long years on, think learning disability is a cause of death or a reason not to resuscitate.

And our beautiful, beautiful boy, who spent hours in this garden each summer as the Maple tree slowly grew, one of the many dead. Dead. Not by ‘learning disability’ (you ignorant bastards). Death by the full panoply of the medical and other professions.