Scrolls

I had one of my recurring dreams last night. Although the setting and the plot changes, there is always a familiar encounter that carries an important message.

In last night’s dream, I was attending a meeting at a classic town hall. I was in the grand council chamber and browsing the artefacts before the meeting commenced. On a side table sat a candlestick. But as I looked at it, I noticed it was actually a scroll. And I instantly recognised the scroll. It was one that I was charged with delivering over 800 years ago. I picked it up to read it and a council official intervened and said, “It’s not yours Sir. Can you put it back please”.

I know there is a key message in there but my reaction on waking was – “Give me a break. Not another sodding scroll”.

Yesterday I went with Alicia Wood to a meeting with the Equality & Human Rights Commission and Liberty. We were seeking their input (backing?) into the ATU scandal and wanted their view on focusing on the human rights breaches in being detained. The meeting went astonishingly well. We talked about the EHRC taking a group action either against a particular provider or against a commissioning body. For once, the families wouldn’t have to take the lead. The commission would bring the case. We talked about them carrying out an investigation into the human rights abuses. That is a possibility. They asked about whether there would be another 7 Days of Action campaign as they felt the previous campaigns had been very effective.

And they asked what the next steps are going to be with LBBill. It was quite a shock. I’ve never seen the Bill as being dead but have been at a total loss about how to move it beyond the brick wall. Hearing their enthusiasm for LBBill, it was like – “Whoosh. Oh hello Bill. You’re back again”.

My gut tells me that the scroll has something to do with LBBill. Or perhaps vise versa. It’s an ancient scroll. I suspect it may go back to Magna Carta. I remembered at the meeting that the EHRC made an independent submission in Steven’s case, seven years ago. We are connected through time.

I couldn’t sleep last night as I felt too buzzy after the meeting. I phoned my friend and she reminded me that LBBill doesn’t have ego attached to it. It’s never been about brand promotion. It’s not about the careers or image of any of the contributors. We and the 100s of people who fed into the Bill are just a channel.

That’s why LBBill refuses to die.

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Wanking

Yesterday was the first day of the two week inquest into the death of Danny Tozer in 2015 in a Mencap supported living home (although going from the evidence so far it looks like another rebranded care home designed to save on care costs by claiming housing benefit).

I went to bed in a rage and woke up this morning in the same state. There is much to rage about. The inquest was only on the first morning yet Mencap’s barrister started dishing out the parent blame during the evidence of both Rosie and Tim Tozer. It is to be expected but it is harrowing to witness. The afternoon session consisted of the evidence of two social care managers from York council and their apathy left one’s heart in one’s boots.

What has really got to me though is the way the Mencap barrister has made such a big deal about Danny’s “private time”. Like a dog with a bone he has questioned all four witnesses about private time. I still don’t understand his agenda. Are Mencap really using a resident masturbating as a get out clause for their appalling care?

Private time is social care speak for masturbation. Some commentators have said that it’s an embarrassed euphemism. I don’t agree. To me, it’s another thoughtless euphemism that’s designed to dehumanise the person. A language that only applies to “them” because “they” are not like us. It’s from the dictionary of phrases like: placement (home), community activity (swimming), personal care (having a shower). A Twitter friend taught me a new one today – self travelled. It means going by bus.

Sex is very problematic for social care practitioners. It’s likely to be filed under the heading “challenging behaviour”. Or worse, and I have seen this often, “inappropriate behaviour”. Having a wank needs to be managed. It needs to be discussed at the multi disciplinary meeting. It needs risk management plans drawn up. Even when someone is living in their own home. On paper, Danny was living in his own home but the needs of other residents had to be factored into his private time plan.

It felt uncomfortable discussing this on social media. But I had to keep reminding myself that it’s not Danny’s sex life being discussed. It’s the complete failure of social care to recognise wanking as a normal activity. It’s also about the shameful tactics of the “voice of learning disability’s” barrister to weaponise this normal act to attack the family and to paint a picture of Danny as problematic.

One is left with the feeling that the State (and I include Mencap in that) has no idea in how people live their normal lives. Learning disabled people are there to be patronised (“Ah. Bless”). To give the State it’s sense of importance and to give the impression that it is offering something of value, the dehumanising of learning disabled people becomes collateral damage. And in case I’m accused of over reacting, language like “private time” is the drip drip drip of the dehumanising process.

I’ve tried to imagine what Steven would make of the concept of private time. Rather in the direct way he dealt with the social worker’s enquiry into whether he’d been out on his community programme, I imagine the conversation going like this:

“Hello Steven. Have you been engaged in private time today?”

“No. I’ve been wadgering. Now I’m going to have a Whispa”.

How To Make A Life

I often feel a bit teary when I get back to my flat on a Sunday evening after spending the weekend with Steven. If the weekend had been problematic, I feel sad that the precious time had been spoiled. Or, if the weekend has been pretty damn perfect I get a bit emotional because … we’ll, because the weekend had been pretty damn perfect.

This weekend has been pretty damn perfect and I’ve been trying to understand why. The other day, one of my clients threw into the session, “I don’t think I was ever taught how to make a life”. What ensued was an existential discussion on what “making” a life actually means and can you be taught how to do it.

I marvel at how Steven makes his life. To an outside commentator it may look a pretty small life. But to someone who loves him, I hear a noise he makes. It’s hard to describe in words. The best I can come up with is it’s like a purr. A purr of total contentment. We spent quite a bit of time doing what Steven calls a “two songs” compilation tape. It’s cover versions basically. I brought him some cover versions CDs for his birthday. Some absolute corkers – James Blunt doing I Guess That’s Why They Call It The Blues and Kylie Minogue doing Bette Davis Eyes. On the tape yesterday I put on two versions of Just The Way You Are. First Billy Joel, then Barry White. Steven loves the Barry version. “Dad – do Barry White” he asked. This involves a vocal and physical impersonation. So I affect my most gravely voice and mop my sweaty face with a hanky. This brings about ” the purr”. And Steven skips off into the hall, announcing “Don’t you just love Barry White”.

Music does make Steven’s life. I always announce I’m going off to bed about 10pm because if I didn’t, Steven would have me up all night chatting about this, that and the other. He goes about his business for another hour and then announces to the support worker that he is off to bed too. On Saturday night, I heard him say, “Michael. I’m off to bed now. And I’m going to be singing some Liam Gallagher”. And for the next hour or so, you can hear from his bedroom – “Maybe, I don’t really want to know…” That makes me and Michael purr.

Is this making a life? I guess so. It definitely feels like living a life. It requires some outside input (i.e. me buying the James Blunt and Kylie CD) but I don’t think it can be taught. It’s too spontaneous for that.

Anyway, enough of the philosophy. Get those hankies out and swallow some gravel:

“Tonight Matthew. I’m going to be….”

Camino LB @ Cowley

Wow. What a day. Camino LB came to Cowley. It’s that old Field of Dreams line again – “People will come…” And boy, did they come. Love. Solidarity. Humour. Spirit. It was all there. Three hours later and I still feel very moved to have been part of something so special.

We started at Cowley Lock and despite the puddles, walked along the towpath to Packet Boat bridge. Then across the Cowley High Road and down to Steven’s current community placement. The second half of the walk took us to the ATU Steven was detained in and from there we recreated the route Steven took the night he escaped from the unit, barefoot and in his pyjamas. I’ve told the story of Steven’s escape many times but I got totally spooked today imagining him walking through that unlit graveyard at 8 oclock on an October evening.

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Along the way we heard many moving stories of families being attacked by the social care system. Stories to rage and weep about. But the stoicism and downright humanity of the families left a strong sense of hope amidst the violence. And it was important to remember we were doing the walk to honour those people who had died preventable deaths – the ultimate violence.

I was proud of Steven for popping out to greet us en-route. After a quick chat about the 1998 Record of the Year programme, he wanted to know who everyone was.

It feels mean to pick anyone out because everyone really stepped up to the plate today but I want to give a huge fist pump to Tom who multitasked like a good ‘un. One minute he was Mark Owen; the next Mr Bean. He also captured the “14 pairs of feet” photo.

It was also weird but brilliant to have a face time chat with Sara, Alicia and the crew doing the big Camino walk in Spain. It put one in mind of Katie Boyle hosting Two Way Family Favourites.

Here are the memories from today:

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And finally, what Terrence Mann might have said about the day:

Let’s Call A Detention A Spade

Time for some straight speaking. Time to “get our language back”. Time for some direct Steven Neary talking.

Today, I heard of a young autistic man who has been held away from his home for over three years. The place is run by one of the leading private providers (Think little swans). He has just had a six monthly review (why only every six months?) and the decision makers decided that he needed to stay there for at least another six months. An all too familiar story. What was different to me was how the place was described in the paperwork. The man is “living in a safeguarding placement”. It reminded me of the story I received from a parent during the second 7 Days of Action campaign. Her son was under a DoLS in an assessment and treatment unit. Only it was described in the DoLS paperwork as “a risk managed home”.

These are lies. This is fancy language designed to obscure the real purpose. Cloud the real truth. Like many people in assessment and treatment units neither of these two guys wanted to be there. Both were being kept there against their will and are not free to leave. They are detained.

Social care has always had a problem with the term “deprivation of liberty”. I’ve heard lots of professionals complain about the “negative connotations”. True, the Safeguards bit is meant to protect people from unlawful detentions. But lawful or not, a detention is still a detention.

Prisoners are detained at Her Majesty’s pleasure after committing a crime. We’re used to that. If you break the rules at school you are likely to be given a detention as your punishment. We know what that means. But health and social care have differing perspectives on the word “detention” to such an extent that it makes the calls to integrate health and social care seem a complete folly. In health, you can be detained under the mental health act because you are ill. No crime but you are considered a danger to yourself or others.

Social care, on the other hand, doesn’t know its arse from its elbow when it comes to the use of the word “detention”. It feels like an unspoken rule to avoid the word at all costs even though a detention is precisely what is happening. On the contrary, social care often gives things names or a language that suggests a positive experience which is in direct contradiction to the person having the experience.

An assessment and treatment unit suggests something positive. Assessment suggests getting to the bottom of something troubling whilst the treatment bit suggests putting the troubling problem right. In the past eight years I could count the number of positive stories emerging from assessment and treatment units on the fingers of one hand. For most of the 3000+ people currently detained in these units, no assessment is taking place. Treatment? Nope, not a lot of that either. People are detained for “assessment and treatment” because they have autism and/or learning disabilities. No crime. No illness. But a punishment nonetheless for being disabled.

The chap that I mentioned at the start of this post isn’t ill. He didn’t go away because he needed assessment or treatment. He went away, and is still away, because the LA and the CCG can’t agree who finds the care for him to live in his own home. He had a home once. That is long gone. His home went after the previous care provider went bust and they couldn’t find a suitable replacement. He’s not living in a safeguarding placement. He is being detained in an ATU because the commissioners are committing a crime (Article 8 HRA, anyone? The MCA?)

We mustn’t get sucked into this language. We’re sunk if we do. No sugar coating. No sparing a professional’s blushes. No fear of rocking a boat.

We must call it for what it is. A detention is a detention.