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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”.

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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.

The Keys

You wait months for a decent story about a set of keys and then two come along at once….

I read a post on social media from a parent whose son is due to be discharged from an ATU into a home of his own, just around the corner from his parents. The mother was unhappy because the LA and the provider company have both refused to let the family have a set of keys to the son’s house. Their argument, as usual, being “independence, independence, independence”.

Fair enough. It’s not okay for a family to think it’s okay just to walk into a learning disabled person’s house. The person is an adult and has a right who he/she invites into his property. It’s not the family home. When I left home, I don’t remember handing my keys back but whenever I visited Dad, I always rang the doorbell.

However, is there something buried away in this ruling that perpetuates the “not quite human” beliefs of services? Most people give a spare set of keys to someone they trust for a number of reasons. My sister has a set for both my flat and Steven’s. We might lock ourselves out. We might lose our keys (see second story). We might want someone to look out for our house if we’re away. We might want someone to access our house if there’s an emergency. Humans rely on other humans to do things like looking after keys but if you’re not quite human then human traits like love, duty, sharing don’t apply. It may seem a small example but human rights are found in the small places.

When I go to Steven’s I knock on the door. Except for Thursday’s when I let myself in. And every Thursday that I do it, I feel uncomfortable. I get to Steven’s about half an hour before he and the support workers get back from water aerobics so that I can get on and do the support workers wages without interruption. To be honest, the personal budget is a piece of piss these days but it still requires concentration. I need the time to do it without Steven instigating a conversation about Basil Fawlty’s cardigan whilst I’m trying to calculate the tax due for an additional three hour shift. A perfectly valid reason for letting myself in but one which Services would disapprove of.

And now a funny keys story..

When I get to Steven’s on Saturday for my weekend sleepover, the first thing I do is to go to my room and slip into something more comfortable. I leave my two sets of keys on my desk next to the computer and there they stay until I leave on Sunday evening.

Last Sunday, whilst getting dressed, I noticed that one set were missing. My flat keys were where I’d left them but Steven’s were missing. The previous evening Steven had been watching the 1994 Gladiators semi final on YouTube so it was a safe bet that he’d moved them. Obviously I asked him and although he can remember he brought a packet of blackcurrant Chewits in the shop at Ruislip Manor 22 years ago, he couldn’t remember what he’d done with the keys the night before. Me and the support worker spent two hours searching for them. We had all the cupboards out, went through the rubbish sack we’d put out yesterday, searched the front and back gardens in case he lobbed them out the window. Nothing. In the end, I went to my sister’s and borrowed the spare set with a view of getting some new ones cut Monday morning.

Just before I left on Sunday evening, Steven turned the living room lights on. In the corner of his living room sits one of the CD cabinets and on top of the cabinet is a Tupperware box that houses the photos of the support workers that Steven uses for his daily planner. It’s also where Steven puts his house keys when he comes home. I noticed something metal shining in the Tupperware box and it was my keys!

Me: Steve, who put my keys in the photo box?

Steven: It was Steven Neary.

Me: Why did you put my keys there?

Steven: Because Steven Neary is an orderly man.

I think he recognised the keys. Even though his keys are on a Mr Bean keyring and mine aren’t, he must have spotted that the actual keys were the same. And being an orderly man, the keys to the Cowley house go in the Cowley Tupperware box.

I’ll end with Steven’s favourite song from the 1993 edition of Christmas Top of the Pops.

Doing Him Proud

I met an old friend for lunch yesterday. We don’t meet up that often. The last time we lunched was the day after the BBC broke the story of the Mazars report. She’d seen it on the news and was surprised that I had been supporting the Justice For LB campaign. So obviously yesterday we spent a lot of time over our tuna mix salad discussing the H&SE hearing and Southern Health’s fine of £2m. I guess both being counsellors we got stuck into the emotional aspect of being part of the campaign but my mate left me with the thought – “There is something about the way the campaign brought out so many different emotions in the participants, my hunch is that it has changed the way campaigns are run forever”. What did she mean? Was she right?

For my part, being involved with Justice For LB was a complete headfuck. The range of emotions it prompted in me was, at times, deeply unsettling. Some comfortable: some less so. I’ve always preferred funerals to weddings. I can’t keep up the happiness that is expected of you at a wedding. With a funeral, you may cry at the interment but I like the wake part. I enjoy chatting to a second cousin twice removed safe in the knowledge that someone isn’t going to grab my arm and drag me onto the dancefloor to do In The Navy. Justice For LB had me the feeling the same. A deep sadness at the heart of it but also the joy of humanity at its best and the great fun that one can have when engaged in something truly creative. But that is disconcerting and uncomfortable. Is it okay to enjoy something whilst experiencing profound pain? I think this is what my mate meant about campaigning changing forever. When the major charities campaign for something their attempt at “fun” is ridiculously contrived. It is embarrassing and has all the allure of a Pontins knobbly knees competition. Justice For LB was too organic for that. At times it was flying by the seat of your pants spontaneous. The humour was that dark kind that Joe Orton would have relished.

Always present, always there, was Connor. His appalling death ripped you apart but drove everything. Those supporters who had followed Sara’s blog prior to 2013 had come to know and love this unique, quirky, intelligent dude and his personality was stamped all over the campaign. His life brought people together: his death more so. Whatever happened during the campaign one could never get away from the aching sadness of his passing.

Beneath that was the stuff evolving in day to day real time. Every act of violence over five years by Southern Health was not only borne witness to but felt at a visceral level. If I had a £1 for every time I shouted in rage, “You wouldn’t believe what they’ve done now” …. well, I’d be able to pay their fine for them. The indifference of Jeremy Hunt. The inaction of so many bodies. I could go on for hours and I probably will. But the outcome was the same emotionally and I genuinely worried at times how I could contain my anger. The personal (“vindictive cow”) and the impersonal ran together in shocking tandem but I guess providing one type of fuel for the campaign.

Creativity is exciting and the extent of it during the campaign took the breath away. Yet once again it brought up such conflicting emotions. Following George Julian’s live tweeting of Connor’s inquest left one wrung out. Evidence revealing such horror. Deeper levels of pain. But the skill of George’s work was also compelling. I truly felt whilst witnessing her work that I was seeing history in the making. I’ve seen live tweeting of events before but George has raised the bar so high, over such an important issue, that the world can never be the same again. Okay, that may be a bit grandiose but the impact it will have for families in the future will be immeasurable.

When human beings come together in goodness and fuelled by the emotions I’ve already mentioned, what place laughter? My old counselling tutor used to say regularly, “There’s no place in the counselling room for laughter”. He was talking bollocks of course. It’s more than a coping mechanism. It’s about love and being alive. Thank fuck that amidst the rage inducing nonsense of Sloven’s viral quality disaster, we have the unifying memory of woman on all fours puncturing the insult of a CEO’s vanity. Pain and laughter is best illustrated for me that day when the son of one of the board members called Sara a “fucking pest”. It led to a Twitter thread that was so surreal and funny (most of it focusing on the fact the Berrymans live in a house with a moat) I cried and cried with laughter. And then felt guilty that I was laughing over something that started so foul. It was that kind of campaign.

Yes. Justice For LB did Connor proud.

And Connor did all those people from all walks of life who came together proud too.

The Safeguarding Dance

This morning I tweeted the following thought:

“Whenever I mention our encounter with Community DoLS, I can guarantee that I’ll get at least 1 reply that feels I need reminding that disabled people need safeguarding from their families too”.

The ensuing discussion went in several directions and Mark Brown joined in the conversation and posted a link to the most recent set of NHS Digital stats on the issue of safeguarding reporting. The link is below but the key figures for me are 23% of harm was caused by family and 32% by social care staff.

http://digital.nhs.uk/catalogue/PUB13499

For me it posed the question, how many cases of abuse or neglect or exploitation by the State are referred by the State. If they are the perpetrators then I would imagine them less likely to refer themselves than if the abuse came from other sources (including family).

I wish to state (like I did on Twitter) that I’m not interested in setting up a Them vs Us battle here. But I am interested in trying to find a way to equalise the power dynamic that exists that will lead, inevitably, to more families being referred for a safeguarding investigations than the State itself.

One tweeter challenged me to give examples where the State financially exploits learning disabled people. I kept my reply to my own personal experience (which thankfully doesn’t include the familiar horror stories of benefit sanctions, fitness to work assessments etc). I came up with quite a list:

  1. When Steven was in the ATU, I received a monthly invoice for £118.80 for his contribution towards the cost of his deprivation of his liberty. He didn’t want to be there. The detention was subsequently found to be unlawful. No account was taken of Steven’s expenditure.
  2. Last year, Steven received a bill in April for £185.00 as a financial contribution towards his care costs. This threw me because the previous year it had been zero. When I checked it out I was told that it is not their policy to carry out a financial reassessment every year but it is their policy to “reset” the expenditure figures to “zero” thereby triggering off a full charge. A committee at the council signed off this policy which can have no other motive than to try and trick their clients into paying for something they may be exempt from.
  3. In the same month last year I received Steven’s council tax bill. It was much higher than normal. I checked it out and exactly the same thing had happened as I mentioned in (2). The LA has a policy to remove the “disability marker” each year and therefore the disability discount is removed leading to a full charge. Once again, a committee agreed this policy.
  4. The whole point of being a court appointed financial deputy is to have someone who safeguards the person’s income and outgoings. Yet the disabled person is charged for this service by the Office of the Public Guardian. Before anyone says it, I know that if the State is the financial deputy, the charge still applies but the point is the incapacitated person has to cough up an annual sum in order to be safeguarded against financial abuse.

Those are just four examples of financial exploitation. It needed me (or someone concerned with preventing Steven being ripped off) to stop that happening. If I hadn’t challenged the care charges, the council would have pursued him for a hefty charge that he cannot afford to pay.

Of course, there are other forms of abuse and two personal experiences that still chill me many years later are glaring examples in the disparity in the power dynamic between the State and the family.

Steven was about 13. At the time I was working one night a week teaching counselling at a local college. We asked for and were given five support hours so that someone would help Julie whilst I was out. This was our very first experience of having support staff in our home. Over a period of four weeks a succession of agency staff came for induction and to get to know Steven. One morning after an induction evening the night before we were visited by the social worker. She said that she had received a safeguarding referral from the agency over an “incident” that had happened the previous evening. As had been his routine since he was about 5, Steven used to collect his Toy Story duvet from his bedroom and bring it downstairs to lie under on the sofas as he watched the evening soaps. He would ask Julie or I to sit at the end of the sofa, so his feet were resting on our lap. This was the safeguarding issue. It took ages for the penny to drop. In fact the social worker had to spell it out to us. Even though the support worker had said that nothing was going on, the safeguarding team felt that his evening routine set up the possibility for some sort of sexual activity going on under the duvet.  I remember going to the kitchen to wretch into the sink. The safeguarding investigation went on for about five months. It was terrifying. We had to stop Steven’s favourite, calming evening routine. We had to convince the team that we had learned the error of our ways and were able to set boundaries around sexual activity. In the beginning we tried to put the case that there wasn’t and never had been any “sexual activity” under the duvet but that only led to grave concerns about our parenting and threats of removal. It was one of the most frightening experiences ever.

Compare that to the experience we had when Steven was a “day client” at the positive behaviour unit five years later. One day Steven was assaulted by a member of staff. He was kicked three times in the leg and had a cup of hot coffee thrown over him. You’d have thought there would have been an immediate safeguarding alert raised. Far from it. When the social worker came to inform us of the incident later that day, she led us to believe that it had been another service user that had carried out the assault. It was only by chance the following day that we discovered it was the shift leader. I’m not sure if we’d have ever known the truth if it hadn’t been for someone letting the cat out of the bag. The LA did promise to carry out an internal investigation. They might have done. We were told that we weren’t entitled to know the outcome of any investigation for two reasons: (1) Because it was an internal matter, and (2) because Steven had just turned 18, we, as his parents, had no legal status to warrant being informed. I’m cynical but I’m not sure they even carried out a safeguarding inquiry. It was very hush hush if they did. Steven was lucky because one of the agency staff whistleblew and informed the police and in the end the CPS decided to prosecute. Nobody from the council, apart from the perpetrator, turned up in court that day.

Somebody suggested that I apply to join the local safeguarding board. I could but that misses the point. I might hear stories like our duvet story but I don’t think I would hear stories like the staff assault or the charges for the ATU admission. They wouldn’t get within sniffing distance of the safeguarding board. We know shamefully through Connor Sparrowhawk’s death and Richard Handley’s inquest that the State isn’t very good at recognising neglect they have brought about. Even if they notice it, experience shows that they’re going to pull out all the stops to avoid holding their hands up to it.

I don’t know the answer. I’m not saying for one moment that families never exploit their disabled relatives. I’m not calling to people living in their own homes or with their families to be exempt from safeguarding investigations.

All I’m asking for is an equality of power. Far too easy to paint the family as the villain of the piece and the State as the benign rescuer.