After weeks and weeks of hard graft, this evening I finally finished the fifth draft of the book; 220 pages, 120,394 words and 100+ bars of chocolate. I’ve now entered that scary zone where I’ve just pressed “send” and the document is winging its way to a potential publisher.
Here are some teasers:
Wednesday 6th January:
Women in Tesco: “Oh, what’s those things called? Those green things?
Friend: “Cucumbers? Runner Beans?”
Woman: “No. You don’t eat them”.
Sunday 21st February:
Set out in the car to the Mencap Pool but had to turn round as Steven started to get very agitated. It seemed to be set off by seeing one of his old classroom assistants at the traffic lights.
When we got back home we did a cassette tape, featuring dead pop stars. We’ve had to add David Bowie and Maurice White to the list since we last did a deceased compilation.
Steven’s understanding of death is pretty rudimentary. He wants to know what part of the body has “gone bad” and what the person “bashed it on” to make it go bad. Once that’s cleared up, he can get on with the business of living.
Thursday 17th March:
We’re well into the final stage of the medication reduction now and it seems to be having no effect on Steven whatsoever. I shouldn’t be surprised. Steven had meltdowns pre medication. He had meltdowns when he was on 4mg of heavy duty anti psychotics. He’s had a meltdown since he’s been on .5mg. He’ll have meltdowns when he’s off the tablets completely. That’s autism.
Friday April 1st
This is the second time I have done this gig. The first time, I booked a cab as I hadn’t got a clue where I was going. The driver was one of Steven’s regulars and said, “You know where this is Mark. I’ve taken Steven there many times”. We actually drove past the venue and turned a corner into the car park of the day centre Steven used to go to. It is run by the Positive Behaviour team who were also responsible for the ATU that Steven was held in. Steven didn’t really enjoy going there and I must admit that it was quite a relief when he stopped going. I always felt that our lives were still under the microscope every time he went there. As we pulled up, the manager of the ATU and his boss came out of the front door. I slid down in my seat and hissed at the driver to drive off, smartish. I started to imagine the conversation if they spotted me:
“Hello Mark. What are you doing in these parts?”
“Well actually, I’ve come to tell the story of how you both tried your level best to fuck up my son’s life”.
Foot on the accelerator, we were off before they noticed.
Wednesday 4th May:
“Dad – Les Dennis has got a bit of pepperoni pizza stuck on his toenail”.
Friday 13th May:
There’s one question HMRC always ask whenever I have to phone them about the Personal Budget tax. “What is the nature of your business?”. I want to answer, ” Interminable shit is the nature of my business”.
Friday 17th June:
In a disturbing echo to yesterday, I got the bus to the café by West Drayton station for a cooked breakfast this morning. As I was leaving, there were two lads in their late teens, standing outside the Polish food store making the wanker gesture at the bloke serving.
A woman came out to remonstrate but was just laughed at and one of the guys said; “This time next week, we’ll be able to take this shop”.
Saturday 16th July:
Took a tearful phone call from Muriel, Duchess of Cowley (widow) who had been door stepped by a Cowley Herald reporter. The journalist had got wind of Muriel’s dalliance with Hector “The Triumphant Trumpeter” Houseman during their variety days when they shared equal billing at Morecombe. Muriel told me that she had been wooed by Hector’s signature tune: “I can’t get over a girl like you. You’ll have to get up and swill out your own dentures”.
Monday 28th November:
The conference went okayish. I was given a 25 minute slot to tell the whole Get Steven Home story. It felt very rushed because it was. There was a classic ironic moment in the opening address. All the delegates were social care professionals and the host tried to whip up a positive vibe by saying that she didn’t want to hear any talk about money today. Or the lack of money and how it hinders them all in their work. She then announced that today’s lunch would be homemade soup, prepared by members of Unison for free. The austerity conference.
Towards the end of 2015 I had the idea that I wanted to write another book. Since “There’s Always Something Or Other With Mr Neary” in the Spring of 2013, I have contributed to other people’s books but have put my literary ambitions on the back burner. I didn’t have a long story to tell like the Get Steven Home book and I didn’t want to recycle my blog posts again like I did for the second book. I toyed with the idea of a fictional piece but inspiration deserted me.
I’ve always kept a diary. I like the discipline at the end of a day of sitting down and writing down my thoughts. Should I publish a diary? Once the seed was planted, it started to make sense. A year long diary would hopefully encompass the two things that I try to present whenever I blog: the humanness and ordinariness of Steven’s and my life together, and secondly, the relentless wading through quicksand that is the world of adult social care.
So that’s what I did: I kept a daily diary for the whole of 2016 and in the week between Christmas and New Year, I started to put it together as a book. For Christmas, I treated myself to Alan Bennett’s new book and I thought that I could shamelessly copy him. His book includes 10 years worth of diaries but lots of other stuff as well: eulogies from memorial services that he’s spoken at; the screenplay to The History Boys and lots more besides. If it’s good enough for Alan…..
Everything but the kitchen sink will be going in. I think the social care world took very sinister turns in 2016 and has effectively killed off my Committee Room Five stories. It can’t be sent up anymore; the reality for too many people is too dark to satirize. The new book will include the complete collection of Committee Room stories, with a final story that I haven’t published on my blog that brings a dark end to Deidre Trusell, Bob Bibb and the Newport Pagnellshire crew. I have included the script for a play that I’ve written for the next 7 Days of Action campaign. The book will come out after the Spring campaign, so supporters of the campaign will know the story. I’ll also probably include the Griot of Cowley stories that I’ve written for Steven about our family tree, for no other reason other than he likes them. And finally, as Steven has lost interest in his Massive Good Songs Radio Show, I’ll include some of the highlights from last year’s Monday programmes.
The editing has been bloody hard work. Ever since I was a kid, I would have short creative moments but never had the discipline to polish the original writing into shape. My drawers are packed with half formed stories and half baked plays that will never see the light of day. This book has forced me to tackle this failing. I’ve now done four edits and I think it would benefit from a couple more.
One thing that I’ve had to greatly revise is my original premise of showing the relentless grind of being trapped in the social care system. I write about it enough on this blog but put together in a single book, it just doesn’t work. For the reader, it becomes unremittingly boring. There’s only so many times someone can read about the monthly chore of doing the personal budget audit before they toss the book into the bin. I would. So, I’ve cut a lot out but I hope the drear still comes across. Because September was taken up with the house move, that chapter does get a bit repetitive, but then again, I didn’t do anything else for the whole month.
The thing I like most about putting together a diary is you can cheat. As I said, I didn’t want a rehash of my blogs but I’ve been cutting and pasting like mad. Good lines that I spent ages coming up with can now be presented as a spontaneous thought whilst I pushed my trolley around Tescos. Another cheat is you can include some of your favourite anecdotes from the past. For example, you can write, “I went out with the support worker to get Steven’s fish and chips. Oh, that reminds me of the time back in 1992 when we saw Cilla Black get into an argument in The Golden Plaice over the size of the haddock”. I’ve done a lot of that.
Two more edits so I don’t get a libel claim from Southern Health, Mencap or any other of my favourite targets and the introduction to write and I think that’ll be it.
I appreciate this post is nothing but a blatant advert but if you can’t plug your new book on your own blog, where else can you?
It’s been a very dispiriting week. Not on a personal level. Steven is still flexing his autonomy muscles and it’s great. I’m back with him for the weekend but this week we’ve only been in each other’s company for two hours on Tuesday and 4 hours on Thursday. That’s what he’s wanted. I suspect I’m finding this new life more unsettling than he is. Before Steven came along, I suppose I had vague ideas of a son flying the nest at some point. Then it became obvious that Steven probably wouldn’t be getting married or going to university or most of those other reasons why your children leave home. What I hadn’t envisaged was that it would be me leaving home! Since the housing debacle of 2013, I have lived in Steven’s home, so if anyone is leaving home it has to be me. I have become the abandoner rather than the abandoned. Not that I see it as dramatic as that. It all feels perfectly natural, albeit a bit strange finding myself trying to carve out a new life for myself at 57.
Anyway, that’s all going swimmingly but this week has seen a fair few disturbances in some of the projects I’m involved in. I’m not going to get bogged down in the detail of the events but want to reflect on the way they are being played out. My sense is we are deep in drama triangle territory again. That perennial triangle where we move effortlessly between the three corners of The Hero, The Victim and The Aggressor. Each of us swims along these triangles most days. Obviously, it is all unconscious which is where the danger lies.
I like to work on the operating principle that there is always a part of ourselves up to no good. There is nothing especially wrong in that but we need to keep an eye out for that no good part of ourselves. I know that within me, my preferred position is The Hero. When that is thwarted I can easily become The Aggressor. My abhorrent position is The Victim. I can’t stand that part of me and I find it so unattractive in others. One scenario that I regularly play out is this: I try to play The Hero and save a Victim. The Victim doesn’t want this because it means they will no longer be a Victim and that is the place that they have made their home. As my heroism has been rejected, my Aggressor springs into action and wants to expose and slay The Victim, further entrenching their position. As I say, this is all unconscious and can sometimes start to play out before I become aware that I’m doing it.
I’ll never forget the client from over a decade ago who announced at her first session with me: “I’ve had 9 therapists over the past 10 years and they’ve all been fucking useless”. Well, you can probably guess where that one went in our relationship. Suffice to say that I can imagine the client, with a new counsellor after me, announcing: “I’ve had 10 therapists over the past 11 years and they’ve all been fucking useless”.
This week I seem to have encountered The Victim more than usual. Some times I have spotted it which has been fine as, by noticing it, I have stopped myself slipping into The Hero role. On other occasions, I’ve been taken by surprise and found my inner Atilla the Hun has surfaced before I’ve sussed what is happening. It is not a pretty sight.
To quote Johnny Hates Jazz, I don’t want to be a hero. It’s a ridiculous claim to make of oneself anyway because it can only end up with you falling off your own pedestal. Or being knocked off. I’d rather not be an aggressor as the blood spilled is not always commensurate with the trigger. And it’s pointless too as you only become fuel for the victim to cement their position. I think the best thing for me to do, for my own sanity, is not to engage with the victim. I don’t mean those (and me at times) who are the victims of an external situation. That happens to us all. But at that point we have a choice. We can either choose to use that situation to gain ourselves more victim points and wallow in our victimhood. We have to spot whether the Victim is asking for sympathy or help. Nine times out of ten they only want sympathy as it will enhance their victim credentials. Offering help will be rejected because it is not what is wanted.
Or we can choose to step out of the drama triangle and not take on any of the roles. On the inside, an inevitable script will act out. On the outside, the landscape is less familiar, more tricky to navigate but more fruitful if you want to break these rotten old pointless patterns.
As I said, there is always a part of ourselves up to no good. Better to make him your conscious friend rather than your unconscious driver.
No families come under the microscope of the State more than those families with a learning disabled member. It starts at birth but really ratchets up when the disabled person reaches adulthood. Whole swathes of professionals suddenly appear on the person’s 18th birthday with big plans of what your son or daughter’s future should look like. Your role in their life will come under very close scrutiny and all your values, beliefs and traditions will be questioned.
Nowhere does this reveal itself more than in the thorny issue of “independence”. And what this usually means to the professional is independence from the family. I’m sure it is not the case all over but there is lots of anecdotal evidence to show that for many professionals, they believe this should and must happen for the learning disabled person between 16 and 18. The very first time we met Whistler’s Mother she asked when we saw Steven living independently from us. He was not quite 17 at the time. She then spent the next 4 years trying to turn her belief into a reality for him.
I’ve been reading the book, The Modern Judge by Sir Mark Hedley. It’s a fantastic little book, no more than 90 pages but packed with wisdom, humanity, humility and humour. I heartily recommend it. In the book, he tries to tackle the subject of State intervention around independence & quotes from one of his own cases, In The Matter of B (a child) (2013) UKSC 33:
“It follows inexorably…That society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent. It follows too that children will inevitably have both very different experiences of parenting and very unequal consequences flowing from it. It means that some children will suffer disadvantage whilst others will flourish. These are consequences of our fallible humanity and it is not the provenance of the state to spare all children all the consequences of defective parenting. In any case, it simply could not be done….”
Adult services are, despite the MCA, person centred ideals, inherently paternalistic and risk averse. It is hard for adult services to follow the principles Hedley talks about. And it is made significantly harder when services have fixed ideas on issues like, the right time for a learning disabled person to be and live independently of their family.
There are so many complexities to the issue that having a template date for independence is nonsense. I’m watching Steven wrestle with these complexities at the moment. Approaching 27, he is clearly experimenting with his independence. For a couple of months I have been with him for 2 hours on Tuesday, 5 hours on Thursday and the weekend. The rest of the time he doesn’t want me there. He doesn’t want the support workers around either and keeps sending them off to his room. In truth, he hasn’t needed me for practical day to day stuff for ages. He does still want me around though for an emotional need that only I can meet. Just before I left yesterday, he called me back to go through a picture in the photo album with him. He wanted to share the whole story of everyone in the photo, how they were related to each other and what were the videos on the shelf in the background! Nobody else but me could have done that with him because nobody else had been around for those original memories. If that is a dependency, it is a dependency we all share for all of our lives. Think of the huge psychological boost you receive when you meet up with an old friend and share a trip down memory lane. Learning disabled people have that need too.
One of the 7 Days of Action families are going through something similar. The dude is 19 and has been in an ATU for four years. The Responsible Clinician is ready to discharge him but only to a supported living placement. He believes the family won’t enable his independence if he moves back home. He may be right but how does his stance fit in with the Hedley quote? I find it impossible to discuss these issues on social media. Nowadays, everybody is encouraged to have an opinion on everything. Advice is given, even when it’s not been requested. There is no space for complexity at all. In this case, I believe that only one person is “right” and that is the dude himself. Is the RC right to decide when the dude should be independent? Is the mother right? In its starkest terms, our independence has nothing to do with anyone else. If it is forced, it is likely to backfire terribly and lead to feelings of rejection and abandonment. If it is refused and the person is forced to remain dependent longer than they wish, that will backfire too and lead to feelings of resentment and bitterness.
The time is right when the time is right. It can’t be forced early or postponed until later. It will be driven by the person themselves, no matter how much they are deemed to lack capacity. As Hedley says, lives, especially family lives are messy but to engineer something that isn’t natural for the learning disabled person, or anyone for that matter, is fatal.
Steven is struggling and will continue to struggle as he teaches himself about his independence. He will cock up; he will get confused; he will get upset. But if I try and step in to “make it alright”, I will do more harm than good. He has to work with and through his own complexity.
Just like the dude in the ATU. If the experts and adults allow him to.
There’s an inevitability that once you’ve been through a traumatic experience, the trauma can be reactivated in the blink of an eye. There is no protection: it’s as quick as lightning.
I caught a bit of football on the TV earlier. The striker took a shot at goal and the ball sailed at least 10 feet over the bar. This prompted the commentator to observe rather pithily: “Well, you could hardly call that a near miss”.
Whoosh! I was back in 2010.
One of the weapons that Hillingdon employed to discredit me in court was, “we believe Mr Neary does not appreciate the importance of recording incidents and doesn’t record every incident that takes place”.
Well, the second half of the sentence was correct. We live in a home, not a labaroratory. However, the first part of the sentence confused me and when I challenged them on, their reply was, “We can find no record of you recording a near miss”.
A near miss! What is a near miss? Steven looked like he might throw that cup? He appeared to be on the verge of kicking someone? I would have laughed but the amount of threat embedded in the idea of a near miss is chilling.
For all the units’ claims to the scientific credentials of functional analysis, this was simply subjective speculation. In what other field, can the expert claim a position they defend in court that’s based on what might have happened? How many people are serving long prison sentences for something they looked like doing?
This is how daft it got and how frightened I became. When Steven first came home, the court ordered that we keep logs at home. Neither me, nor the support workers knew what a near miss was but knew we couldn’t hand in a log without any near misses. So, I made them up. Once a week I would type up what the support workers had written during the week, I’d add a couple of fictional near misses. The guilt was terrible. I felt so disloyal towards Steven but knew Hillingdon would try and get us back in court if we were near miss less.
These shite memories have been running through my head all day.
It could have been so different if Number 8’s attempt at goal had hit the target.
This morning I received an astonishing reply to the complaint about the state of Steven’s home when we first got the keys and the ongoing issues we’ve had ever since.
Just a quick reminder, these are the photos that my sister took, the day after we got the keys. Bear in mind, the council expected Steven to move in immediately, so they believed this condition was acceptable.
Here are a few claims that the council have made in reply to the solicitor’s complaint:
“We note your comments regarding the cleanliness and decorative standard of the property
at the time of letting and can confirm that the property met the Council’s minimum lettable
“You will appreciate that the Local Authority is unable to redecorate properties
prior to re-letting and that properties cannot be prepared for letting in the same way as a
property in the private sector”.
“The void works show that the property was cleaned and redecorated in order to make good repairs that
were carried out”.
“They (the damp inspectors)considered that the property was in a good state of repair and that the damp
conditions inside the property were the result of the drying of washing on the radiators and the lack of ventilation”.
“The boiler and central heating works are carried out by a contractor, *******, and my clients do not have access to their records, however I am instructed that they have confirmed that all works requested of ******** have been carried out”.
“Clean flat. Clean flat in preparation for new occupant.
Graffiti: Remove graffiti. Remove graffiti non-absorbent from any previously decorated or surface including overcooling
It’s all bollocks and I apologies for boring the pants off my readers with these never ending tales of the flat but I’ve learned that it is important to document every last detail and this blog is as good a place as anywhere.
Just before Christmas, someone sent me a link to a Facebook group about Deprivation of Liberty Safeguards and said, “You should join this group Mark. Think you could contribute a lot”. I clicked on the link but it was a closed group, so I pinged off a member request.
A couple of days ago I got a reply. It praised my contribution to the DoLs debate but refused my application as it was a professionals only group. In fairness, when I clicked back on the original link it did say this in the group description but I missed it first time around.
I’m not sure why it has pissed me off so much. I totally see the point of professionals, from whatever field, having their own group. If I had, say, a dicky bladder and I came across a group for surgeons who operate on dicky bladders, would I expect to join? Probably not. So, why should this be different?
I think partly it’s because it touches those scars from 2010 and all those dozens of professionals meetings that were held without me or Steven and where such calamitous decisions were made. The message from the whole year was “we know better”.
I’ve had a thing about bouncers since my late teens/early twenties. I was a very well turned out Mod. I had a two tone suit for each day of the week. But me and my mates were often stopped from going into pubs and clubs. The body searches took longer as the bouncers looked for weapons and/or drugs. This latest rejection feels like they took one look at my suit and turned me away.
The other thing triggered by not being allowed in the group is that perrenial question; can you effect change from the outside or do you have to be on the inside? When I’m invited to give a talk, I’m very much on the outside. I’m a “turn” who is wheeled out with an interesting, entertaining story and it’s a story that makes people feel better about themselves because “such a thing could never happen here”. Excuse my cynism, but this reinforces that thought which is always in the back of my head.
I mishievously posted on Twitter what had happened. I got a lot of supportive responses. Some people from within the FB group gave what felt to me rather patronising replies about “admiring your input”. Someone accused me of drawing them into a drama triangle, which was interesting. I wasn’t positioning myself as the victim . I don’t like that stuff. But he/she saw me as the victim turned aggressor and wanted to claim the victim position for herself. All over a bloody DoLs Facebook group.
Ironically, yesterday I went to the Eye hospital to be told that I’ve got permanent floaters. It’s inconvenient more than anything. These strange cobwebs that suddenly obscure my vision. The consultant said, “Your brain will get used to them. They’re your mates for life”.
My vision about “knowing my place” is obscured and probably will be all my life. I definitely have no desire to be on the “inside”. But this was about another experience of insiders deciding my place is on the outside. And inviting me for a brief visit inside to suit them.