The Last Institutions?

I’ve been thinking about the UK’s great love affair with institutions. Large or small, although we used to prefer them the larger the better. Different types of institutions but generally designed to meet the same principle – anything we don’t like seeing on the outside, send them in so we don’t have to unsettled ourselves by a daily encounter.

I was watching the Robert Rinder episode of Who Do You Think You Are. He was looking into the history of his great grandfather who came to London from Latvia at the age of 19 already traumatised by early experiences of unrest in his homeland. By the age of 29 and by now married with a few children, he was admitted to Frimwell Green lunatic asylum. The admission notes presented to Robert clearly showed his great grandfather suffered from what we would now call paranoid schizophrenia. He remained in the asylum for the rest of his life, dying 14 years later at the age of 43. The case notes in his last years became fewer and fewer and Robert sadly realised that the world gave up on him. The family had long stopped talking about him and the hospital had lost any interest in treating him, beyond a barren containment.

This story reminded me of my maternal great grandfather’s X 2 story. William Worley was born in 1800 and his life took a turn for the worse in 1833 when his young 29 year old wife died, shortly after the birth of their seventh child. One by one the children were taken in by various neighbours in the village as William turned to crime, presumably to support his family. He was out of prison by the mid 1850s but leading a solitary life until he was admitted to the Amersham Union workhouse in 1857. He lived there until he died in 1873. 16 years in such a wretched institution. They weren’t designed for such long periods of habitation (placement?) so one is left wondering how he came to be there for so long. A workhouse is different from an asylum although the Amersham workhouse seemed to have a wide clientele. William was classified as a “pauper” but James in the next bed to him was recorded as an “idiot”. Perhaps what they had uncommon was their unsavouriness to the sensitive Victorian eye and therefore had to be kept out of sight. Time became immaterial. The institutions were about containment rather than treatment or rehabilitation.

The Neary family had two further brushes with institutions in the 1950s and 1960s. My two cousins spent their childhood in the Margate residential school for the deaf. My Uncle Frank, who I’m pretty sure had a learning disability, spent the last two years of his life in Derby’s asylum from 1953 to 1955. Looking at the publicity material of both places from that time neither of them saw themselves as institutions, certainly not in the negative way asylums and workhouses had begun to be viewed. Spin was a less sophisticated affair back them but it’s pretty clear that both Margate and Derby believed they were providing a very positive service. The benefits tended to focus on the physical but nonetheless the general message was, “This is a good place for you. You’ll be better off here than anywhere else”.

On a side note, I’ve always wondered how Uncle Frank ended up in Derby, so far from his home in Southall. Now we know from 2018 experiences that placing someone 100s of miles from their home is commonplace but why Derby? The other day I discovered that two of the founders of the Derby asylum were previously superintendents at St Bernards Asylum. In Southall. It’s possible that Uncle Frank was known to them from their work at St Bernards and when they needed patients for this top of the new range facility, they traded in people from their old stomping ground.

Workhouses and asylums have long gone. But in the shape of assessment and treatment units, the nation’s attraction to institutions continues. Are ATUs the last vestiges of a particular British preference? Are we in the last knockings of that feature from the shadow of the British psyche – repulsion of disability and the disabled? Frankly, the Victorians were repulsed by pretty much everything so it’s not surprising that instititutions became so popular. Nowadays we are meant to be all inclusive with a warm empathy to the “unseemlier” members of our society. We’re not of course. The only thing that’s happened is for that repulsion to be pushed deeper into the unconscious shadows but it can’t suddenly disappear.  It’s got to go somewhere. We’ve got to hang on to something to project the worst of our disability intolerance on to. ATUs serve a very useful purpose on that score.

1873, 1953 or 2018? Everything has changed. And nothing has changed.

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Category Management in Cowley

Oof. It’s so cool to hang out with Steven when the world around you feels like it’s taken leave of its senses. Yesterday was shit. A stupid pointless Twitter spat that I should never have got involved in; irritation at the personal trainer in the cardiac circuits class and my ongoing struggle to accept having to use a catheter for a fortnight. Five minutes in Steven’s company and all that evaporates like a fragrant fart.

We watched the Paul Heaton documentary. I thought Steven was going to go pop with excitement when Norman Cook pitched up. “All Paul’s old friends are back again. Happy now”. Despite a deep resistance to any change whatsoever, Steven really embraces the concept of a cover version so was dead excited to hear Paul and Jacqui singing A Little Time rather than Dave and Briana.

After our viewing Steven got around to planning this evening’s DVD viewing. For weeks he’s been working his way through his enormous collection of music DVDs. I’m fascinated by how he categorises his viewing. On the shelves, they are all in meticulous alphabetical order. When it comes to watching them he has, what is to me, a perfectly logical viewing order. For example, on Thursday he watched Slade. On Friday it was T Rex. On Saturday, Sunday and yesterday, it was the three disc boxed set of The Sweet. Steven tells you the question he wants you to ask him, so this morning he said, “What you going to watch later Steve?” I asked him and he pulled out his Sparks Dvd – “Steven Neary’s going to watch Sparks with Ron with his cross face”.

I’m mightily impressed with this running order. It’s basically all the glam rock videos back to back. This isn’t a one off. Over four days a couple of weeks back, he selected: Spandau Ballet, The Human League, Duran Duran and Soft Cell. We also had a week of: Stevie Wonder, Diana Ross, Lionel Ritchie and Barry White. There’s a method at work here. But I’m fascinated how he’s got the categories spot on. How does he know? In discussion, any song prior to 1990 was made “when Steven Neary was a tiny seed in mummy’s belly”. That could apply to Blockbuster (1973) and True (1983). Somewhere along the way he’s identified the difference between the glam rock era and the new romantic era. I’d love to ask him but he wouldn’t be able to verbalise how he knows.

And somehow that’s both a shame and magical at the same time.

The Words On The Tin

Back in April 2012, I wrote the first post of this blog. It was about the language of social care and how so much of it clouds or excludes. One thing that you have to learn pretty smartish when you ask for support is that the reality is often the exact opposite of what is presented to you and language is the main vehicle for skewing the reality.

Over the years I’ve written loads on this theme. Not just in this blog. Steven’s court case gave me a platform where I’m invited to speak at events or write for various publications and the language of social care is often the bedrock of my talk or written piece. Since 2012, I’ve also become more aware of how cancerous the practice of “othering” learning disabled people is and once again, the language is the first step to turning people into non human objects. Service users in placements. Service users accessing the community. Service users displaying challenging behaviour. Family relationships are not mentioned. Instead you become another name in a circle of support. As I wrote for Rightful Lives, the minute someone is seen as non human, the door is opened to all sorts of unspeakable violence towards them. A death is met with an indifferent shrug and any attempts to present the humanness of the deceased person is only met with more violence. This isn’t an accident. This is deeply embedded practice. A means to justify an dehumanising end.

During the last six years, I’ve been constantly fascinated by the ability of social care to reinvent it’s language but never its values. It’s like that bash the mole game at fairgrounds. In my last blog I wrote about the new housing word for learning disabled people – a Pod. It’s a bluff on many levels. The actual “building” is a cross between a shed and a 1960s Pontins wooden chalet. But obviously they can’t call it a shed or a chalet. They need a new word. A Pod. In a few months time, there’ll be a new word. Whatever it’ll be, it won’t be called a home. Or a house or a flat. A positive behaviour support therapist can live in a maisonette. A social care commissioning manager can set up home in a house. The supported living care assistant can finish their shift and go home to put their feet up in their flat. But check out the care plan for the learning disabled person and it will say, “P’s current placement is a community based Pod”. They could be writing about ET. Even the language for an animal would be more recognisable to the general population – “Fluffy the rabbit lives in her hutch”.

Once the setting for the non human’s residence has been established, everything that goes on within it, follows the same pattern. Nobody cleans their teeth and has a shower. They have personal care. Nobody watches Fawlty Towers with their Dad. They engage in social interaction. And absolutely nobody has a wank. They have private time. Back in 2012, I made a vow. I had been so upset and disgusted at the way Steven was painted in all the court reports, I was determined to redress that portrayal. I know I can be a bit of a pain about it but I refuse to collude. I hope that whenever I write about Steven, his humanness is the striking feature of the writing. I hope the normality of his life resonates. I take my lead from him of course. It wouldn’t occur to him to ask for his personal care when he asks his support worker to give him a shave. I also much prefer his idiosyncratic use of language that swings across several decades within the same sentence. He’s just sorted out his The Proclaimers CD collection and announced the task had been completed with “Craig and Charlie are all ship shape and Bristol fashion”. I find that much more appealing than positive outcome completion. (That’s the phrase they used to write on his “behaviour monitoring log” whenever he made a pepperoni pizza).

Sometimes the two world collide and produce the moments of greatest fear and awkwardness because you’re dangerously entering into exposing the king’s got no clothes on territory. If you don’t use the language or play along with the false reality, dreadful consequences can occur. A smile, a stutter, a silence can be seen as an integrity exposing accusation and violence is never far away. The worse thing I ever did was to laugh at a multi disciplinary meeting. The absurdity and intensity of discussing a risk assessment for visiting his uncle prompted an unexpected snot filled laugh from me and instantly I knew I’d made a major mistake. I was talking about a human being. My son. My mate. They were talking about an object under a laboratory microscope. Everyone around the table could visit their uncle without a risk assessment but that’s okay because they’re human. Steven isn’t. My laugh said as loudly as any words – “Steven is as human as you and I”. But those words can never be uttered because the logical conclusion is – “You’re not needed. You serve no useful purpose”. Who wants to hear that about the job they’re doing?

This week Steven had his six monthly check up with the psychiatrist. It was a rearranged appointment. I missed the one back in October because I was in hospital recovering from a heart attack and forgot to remind the support workers. It was a bit tricky for the psychiatric team. If a learning disabled person isn’t human, then their families don’t live normal human lives either and a heart attack was a bit too real life for them. The elephant in the room for the past 10 years at these six monthly appointments is what the fuck is Steven doing seeing a psychiatrist? You’re plodding along seeing a paediatrician and then, Boom, you reach 18 and because you have a learning disability you are referred to a psychiatrist. It sets the tone for the rest of your life. Humans only see a psychiatrist is they have a mental health problem but you’re not human and a psychiatrist is seen as the best fit. Keeps a lot of people in jobs anyway.

My job for the rest of my life is to keep on keeping on with the human stuff. It’s the only thing I can do and I’m such an obstinate buggar, I can’t stop.