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What I Have In Common With Terence Stamp

July 13, 2013

We’ve just got back from our week in Burnham on Sea. It was a very strange week of log flumes; Take That; cooked breakfasts; Mr Bean; Water rapids. And trying to make some sense of the appalling death of LB. Which on one level can’t be done because it is senseless. But on another level, it makes total sense and it is all the stuff that Sara and I write about. The care system is about many things but one thing that is absolutely not about is – care. The more immersed I become, the more I know that Steven is a very peripheral figure in his care. A whole industry exists that depends on people like Steven and LB but that’s the end of it – the service user has no other real use than to inflate the industry.

It feels more important than ever to tell normal stories as well as the horror of the care industry. Social care can have its personalisation but it wouldn’t recognise a real person trying to live a real life if it fell over them. It’s not its function to see real people – real people get in the way.

So, with that thought in mind, here is my favourite real person story of the holiday. Since Steven has got wind of the eviction next month, he has been pretty clingy. Every time I went out on the veranda to read the paper, do some writing, he followed me. On one of these moments, a gardener started watering the pot plants outside our caravan:

Steven: Hello Man. What’s your name Man?

Reg: Hi Mate. My name’s Reg.

Steven: Reg looks a bit like Lasse Haelstrom.

Reg: Who’s that then mate?

Me: He’s a Scandinavian film director.

Reg: Oh yeah – I know – he did “My Life as a Dog”, didn’t he”

Steven: NO. He did Abba, The Movie.

As Reg moved on, laughing, to other plants, Steven decided Reg needed further education…..

Steven: Lasse’s pioneering pop videos brought Abba into people’s homes.

Steven packed a fine collection of DVDs; one for each day. On Tuesday, we watched “Priscilla – Queen of the Desert”. Steven loves the final, Mama Mia scene and thinks it’s hysterical when Mitzi says: “Oh – my tits have fallen down”. In the preceeding scene, Bernadette (Terence Stamp) announces that she’s not going back to Sydney with the other drag queens but will be staying behind in Alice Springs.

II almost had a Bernadette moment yesterday morning. The bags, Steven and the support workers were loaded in the car. I had to drop the key back at reception. As I left, I had an overwhelming urge to turn around and stay there. I sat down on a wall for five minutes, contemplating the possibility of squatting in a caravan, when the car tooted and so back home I came.

And back home to what? Worries about my health. Since the eviction news, my health hasn’t been too good, although for the five days of the holiday, I felt fine. Worries about Steven’s health. I’d love to find a health or social care professional who’d take Steven’s weight problem seriously. In the six years since they put Steven on medication, his weight has doubled. He is now twice the size he was pre-medication. But all the professionals will focus on is diet and nothing else. Steven’s diet is pretty good and in no way accounts for such a massive weight gain. Before the holiday, a Twitter friend told me that she had a similar problem getting the professionals to acknowledge the same problem with her son. They only wanted to talk about diet and exercise and the fact that she insisted that something else was going on, had her marked down as a problem. It was only when his organs started failing, that it was discovered he had built up 10 stone of fluid around his vital organs. 10 stone! I looked at Steven in the swimming pool and it struck me as quite possible that he’s the same. But where the hell do I find someone prepared to acknowledge the possibility that the medication may be causing terrible damage, and investigate. I know that Hillingdon still monitor my online activity, so even if they read this, it will just be filed away in their file labelled – “Mr Neary doesn’t take diet issues seriously”.

The other good reason not to come home is our housing situation; it is just one month and two days until we become homeless. Ten months on from being given the news about the housing benefit stopping, things haven’t moved an inch. There is still no date for the housing benefit appeal, although I’ve been assured that I’m now in their “urgent category”. I received an email whilst we were away from a housing manager, inviting me to a meeting on Tuesday morning, to “submit a homeless application”. WTF. I thought I’d done that several months ago. But a homeless application is different from a housing application, which in turn is different from an “emergency housing application”. So perhaps I haven’t. It’s a maze of processes. Just like all the impenetrable social care processes. Most of my life, as I have a learning disabled son, is bound up in one process or another. And one thing is clear – a process has nothing to do with people (sounds familiar?) No, it is just self serving shite for people to justify their jobs. Last November, I sat in a meeting with the assistant director of housing, who took down a lot of details about Steven’s requirements for social housing and promised to get on to it. Eight months on, that has produced nothing and I’m being invited to start a new process.

Catching the sun outside the caravan, several disturbing thoughts kept floating into view: how will Steven cope on the streets or in a B&B?; how will I cope with Steven in those environments; what do I do with all our belongings if that’s where we end up in four weeks time; how do I manage financially with all the work I’ll be forced to miss? It goes on and on.

So, hiding away in a caravan for the forseeable future carried a certain appeal. Coming back is less an upbeat Abba song with Mitzi and Felicia; more a Joy Division ditty.

I guess the tile of this post is misleading. I don’t have a lot in common with Terence Stamp. He stayed on – I came home. And he looks better in an A line frock than I do.


From → Social Care

  1. If it comes to it, we can store some stuff. I am beyond furious with your situation yet feel totally impotent. It’s this whole industry which depends on people like you and Steven and yet doesn’t aim to serve or support them in any way which gets me most mad. It’s a weird kind of job creation for people who could do something else. Seriously, if you need to store things, please let us know.

  2. “The care system is about many things but one thing that is absolutely not about is – care.”

    “Care is the consenting commitment of citizens to one another. Care cannot be produced, provided, managed, organised, administered or commodified. Care is the only thing a system cannot produce. Every institutional effort to replace the real thing is a counterfeit.” “The Careless Society: Community and Its Counterfeits” by John McKnight.

    • swanarchie07 permalink

      Wow what a fantastic concept thanks Norman x

  3. James permalink

    I guess I am lucky that this is not an area I have had direct experience with but I found your blog very moving.

    The high level of institutional behaviour required to get you to the point that you write ” I know that Hillingdon still monitor my online activity, so even if they read this, it will just be filed away in their file labelled – “Mr Neary doesn’t take diet issues seriously” is just totally shocking.

    It sounds like you are battling with an impersonal juggernaut which can no longer tell when its doing good or when it is doing harm.

    As it says elsewhere — “keep strong” — or in Winston Churchill’s own words “If you’re going through hell, keep going.”

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