Disappearing Words

I’m struggling with the vocabulary for this post. As Steven and I approach our tenth year of being trapped in adult social care, I find I can’t use normal, everyday words anymore that have been purloined by Planet social care.

This post is meant to be a celebratory piece about Steven’s growing independence. But I can’t use that word anymore. Independence. It’s become mangled. I know this is rather precious of me but I can’t bear things that are important to Steven being passed through that dishonest, self serving social care filter. I now work on the basic operating principle that the more the social care world trumpet a particular word, the more likely you are being royally shafted. Let’s face it, social care doesn’t really want its service users to be independent. That’s a hugely threatening prospect. Think of all those jobs and culture tied up with learning disabled people and their families being totally dependent on the state’s beneficence. When Steven’s professional “stakeholders” talk about independence, what they really mean is put him in a supported living flat, with minimum staff, serving the needs of as many residents as possible and syphoning the savings into creating more bureaucratic roles.

When I meet a new client now, I’m too embarrassed to say that my training was partly in the person centred model. If they’ve been within ten feet of social care, they’re likely to have a jaundiced view of person centred practice and have probably had their fingers well and truly burned.

I don’t tend to use the word “choice” anymore. That’s been corrupted. I would never claim to be “in control” of anything anymore. That’s disappeared over the cliff too. I wouldn’t dream of “enabling” or “empowering” anybody. So many words have bitten the dust.

Since my last post, “Dad Can Go”, things are accelerating fast. It’s looking like I’m only needed at the weekends and a few hours on Thursdays. Steven is doing so much processing at the moment and for that he needs his own space and time to work stuff through. He doesn’t need a multi disciplinary team to facilitate that. He doesn’t need me or the support workers either. He can do it himself, in his own way.

The other day Steven came up with the perfect illustration of what he’s working through. On Christmas Eve, Uncle Wayne popped in with little Henry. The four men, Steven, Me, Wayne and the support worker sat thoroughly entertained as Henry showed off his repertoire of forward rolls. A couple of days later, Steven wanted to check something out with me:

” Dad. Steven Neary is a man. Henry Keary is a boy? Boys do playing. Men do sensible?”

I think he’s working out, to quote Westlife, what makes a man. Some of it is coming entirely instinctively; some requires some thought. In my mind, it’s about maturity and the wisdom of age.

And that’s bloody perfect.

And it can’t be corrupted by the misappropriation of language.



Dad Can Go

There’s a massive change happening in the Cowley house. Although it is being driven by Steven, like any change, good or bad, it is making him very unsettled. This change has all the hallmarks of being very positive, although it’s exposition is like crossing a minefield.

Since Steven moved into his new house in October, he is wanting me around less and less. He has fully embraced the idea that it is his house and moves around it with total authority. He constructs his day and is intolerant to any external suggestion to do things differently. A lot of the old routines have gone out of the window.

I guess it started in those three weeks before the move when I had to spend most of the time at the new house making it habitable. Most of the things Steven and I do together had to be handed over to the support workers. Steven found this initially difficult and the outcome has been that some things have been dropped forever. Whilst others have formed a new routine that doesn’t include me.

Take Tuesdays. Prior to the move, Steven followed the same routine for years. Upon his return from his water aerobics group around midday, me and Steven would prepare a C90 tape in preparation for his Wednesday morning disco. Then we would watch an episode of Gladiators together. The support worker would return from 3pm to 6pm whilst I did the personal budget admin and then from 6pm, Steven would do a two hour music DVD session, calling on me to cue up the tracks. All that has changed. Steven now does the tape with Des. “Dad can go to his room”. Then instead of Gladiators, Steven chooses a video and insists he watches it on his own. “Dad can go to his counselling work house”. “Alan can go to the kitchen”.

As I said, this is all good from an independence perspective.

So, what’s the problem? As much as Steven loves his new home, I don’t like it. It’s partly because I’m worn down by the damp, the boiler and all the other things wrong with the place that he doesn’t really notice. It’s also because I get bored spending most of the day in my bedroom. I start to feel a bit claustrophobic. And I’ve got that bloody allergy to the carpet still. I’m wearing my trainers or slippers all the time but the other night I got up for a pee and forgot to put them on and by the next day my feet were red raw again. It’s also very symbolic.

The other problem with “Dad can go to his counselling work house” is that I have to pay the support worker to cover my absence. That’s £30 from 6pm to 9pm and £65 for the Nightshift. This isn’t covered by the personal budget, so I have to find £95 myself. I can’t sustain that.

Back in 2011/12 when I had to attend monthly meetings with the council, their first question would always be, “When do you see the time when Steven will be living independently from you?” I always knew that their hidden agenda was to move Steven to one of their 20 unit supported living flats with pooled budgets and minimum staff. But I could never answer the question because I always felt it should be driven by Steven. When he was ready, it would happen.

The life Steven has now is very different to the LA’s idea of independence. It is genuine independence. It’s not a cloak to hide saving money and warehousing people. Heaven forbid, Steven’s life is what a non learning disabled person might choose for their independence. But for him to push it one stage further and have Dad at his counselling work house most of the week, will expose the kings new clothes of the council’s “independence” policy. Will they joyfully increase his budget by £95 per week so he can achieve the independence he is striving for? Or will it rekindle the real agenda of the supported living studio flats?

Whatever happens, it will be another battle.

The Clock

I wish I could turn back the clock.

To a time that never existed on calendars or in diaries.

A vague time. An imprecise time.

A time before adult services & personalisation & personal budgets.

A time before capacity and public guardians.

A time when a new Proclaimers DVD didn’t appear on a balancing sheet to be scrutinized for financial abuse.

I wish I could turn back the clock.

To a time when you didn’t live in fear.

To a time when Christmas wasn’t ruined because you feared being taken away.

To a time when you trusted the world to stand by you.

I wish I could turn back the clock.

To a time when I wasn’t watching the clock.

And waiting for it to hit the hour so I can get a break.

I wish I could turn back the clock.

To a time before medication and a healthy liver.

To a time before you were forced to share a room with damp.

To a time when the neighbours understood & liked you.

I wish I could turn back the clock.

To a day before choice and independence.

To a day when you had choice and independence.

And nobody noticed or used it to disrespect you.

I wish I could turn back the clock.

But I can’t Son.

So let’s face the new year with love, belief and balls.

Those three angels in your DNA that teach me everyday.

The lesson of how to live a life with courage & humour.

And honesty and straight forwardness.

I dont want to turn back the clock really.

Happy New Year Son.




Strategic Ghosts

Yesterday, a ghost popped back to Cowley.

Have a butchers at this report from the Wolverhampton Star:


Although we are not mentioned by name, Steven’s case is the one referred to in the penultimate paragraph. Linda Saunders was the Director of Housing & Adult Social Care at Hillingdon during the time of Steven’s unlawful detention in 2010. The woman who signed off the care plan to move Steven to Wales. The woman who waited to deliver her apology until the cameras were rolling on the steps outside the High Court.

I know that she was still working for Hillingdon in late 2012. She was in charge at the time Hillingdon made us homeless and led to the past four years of not knowing where we will be living. I remember her coming onto Radio 5 to defend the council’s position and bizarrely , even though she wasn’t asked, wanted to make it clear that the eviction was not revenge of having to pay Steven damages.

After Hillingdon, she moved to the same sort of role at Dudley Council. There have been several reports since about the “failing services” in social care at that authority.

It looks like she stayed there all of two years before descending upon Wolverhampton at the end of last year to take up the position of “interim strategy director for people”. Trousering £241, 542.00k per annum in the process.

This report was sent to me by one of the parents involved in 7 Days of Action. In a grotesque version of Groundhog Day, she told me how Ms Saunders had been the person that signed off the court of protection forms to support the council’s decision to move her son miles out of borough. Six years on from our case and it looks like she is still up to her old tricks.

What on earth is an “Interim Strategy Director For People”?

From the experiences of the past six years, it looks like her strategy for learning disabled people is to get shot of them from the borough in which she works. And nothing interim about their moves. The strategy brings about permanent moves in the cases I know about. After Steven’s case was reported, I heard from several other parents in Hillingdon, whose children had already been shipped out or were on the verge of being moved. It seemed to me to be a deliberate strategy, albeit one that you would never see publicised.

What is it about people in top roles who encounter public disgrace for their failing in their role? The story of Linda Saunders has clear echoes of the story of Katrina Pearcy, the CEO of Southern Health. She also was moved from her CEO role into an “interim strategic” role on the same sort of salary as Ms Saunders. Are they part of an elite that have been sent to earth to cleanse the country of leaning disabled people?

You know that phrase, “if you pay peanuts, you get monkeys”?

I’ve got a new one: “If you pay gold nuggets, you get gold-diggers”.


Less Massive

I’m going to repeat an old story here.

For two reasons. Firstly, because it feels timely and appropriate in the week the CQC published their Deaths Review. Secondly, because as Steven would put it, “it’s big massive news”.

In January 2014, I decided to use a chunk of Steven’s compensation money and took him to a private health clinic up near Bakers Street. For about six weeks he had been howling in agony, clutching his side and begging anyone to take the pain away. For six weeks we were shunted backwards and forwards between the GP and A&E as neither seemed prepared to take his agony seriously. A locum GP even tried to pass it off as ” imagined pain” as Steven was bent double on his floor. A referral was made for an ultra sound but nothing happened.

Imagine the shock when the doctor at the clinic, after doing a full body scan, announced that Steven’s liver was failing. His body weight was producing a fatty liver and could prove fatal. The only smidgen of relief from the consultation came when the doctor agreed that the medication was probably the primary cause.

In 2006, Steven weighed 13 stone. A paediatrician put him on Epilem Chrono to help with his anxiety. In 2008, after transition to adult services, the psychiatrist put him on risperidone. A serious anti psychotic to manage the existential crisis of becoming an adult. By the time Steven came out of the ATU, the dosage of risperidone had been tripled.

When Steven was weighed at the private clinic, his weight was 29 stone 2lbs. 16 stone weight gain in 8 years. He was dying. Death by medication. And nobody gave a toss because Steven has a learning disability.

Between 2006 and 2014, I must have seen more dietitians than is possible to see. Kept ring binders of food logs. Spent a fortune in personal trainers. But all along, I knew deep down that the weight gain had little to do with Steven’s food intake. Nobody would believe me. Nobody would acknowledge the glaring link. Even after the liver diagnosis, the GP’s first reaction was another dietitian referral. The psychiatrist was completely disinterested in starting a programme of medication reduction. Out of desperation, one day, I contacted the expert psychiatrist from the High Court case and begged for his help. He did and without the treating psychiatrist’s support we started the long process of weaning Steven off. By this time, he was taking 4mg per day, so a .5 reduction every three months seemed endless.

Almost immediately, the weight started to fall off. Steven last had a risperidone tablet in April. There has been no change to his anxiety or behaviour whatsoever. He got anxious on the medication: he gets anxious off the medication. He’s broken stuff on the medication: he’s broken stuff off the medication. That’s life. That’s autism. That’s being a human being.

Today, the support workers weighed Steven at swimming. He weighs 19 stone. Still too much but a loss of 10 stone in 2 years. We can only hope his liver is repairing itself.

If Steven had died, there wouldn’t have been an investigation. It would have been put down to “natural causes”. All the health and social care professionals in Steven’s team unwilling to make the link between the medication and the weight gain.

On the day back in 2006, the paediatrician prescribed that first tablet, Steven had just thrown a carton of apple juice over him. If I saw him today, I’d find something more lethal to throw at him. His apathy, like several professionals that followed him, nearly led Steven to be a CQC statistic.

Outraged For All Eternity

My friend came to stay last night. We went out for dinner at my favourite eatery by the marina. When we arrived, it was obvious that the restaurant was preparing itself for a do. The waiter told us they were having a 90s night. By the time we’d finished the main course, the place was filling up, so we took our coffees outside and watched the barges, escaping Ebeneezer Goode by the skin of our teeth.

When we got back, we watched the news and they had an interview with Gina Murray, the woman who has brought the Article 50 case to the Supreme Court. It was a longish interview but focused entirely on the level of abuse Ms Murray has received since challenging the government. True, the abuse has been awful but what was difficult to fathom was the outraged shock. Whether you’re in the remain camp or the leave camp, it’s a pretty incredible achievement to take the government of the day to the highest court in the land but here was an interview with the sole purpose of presenting Ms Murray as a victim. And she seemed happy to go along with it. What is that all about? My friend has a theory that I totally go along with and its about the 21st century way of enslavement. It follows three steps:

Step One. Be framed and identify oneself principally as a consumer. Embrace your world of the market place. Believe in the idea that you have choice and independence.

Step Two. Foster a sense of entitlement and expectation. If I want it, I can have it. And someone has to deliver what I want. My needs and desires are paramount.

Step Three. When step two doesn’t happen, react with outrage and rage. Victimhood carries a certain nobility and the outraged victim is a badge to be worn with distinction. It takes us back to the start of the circle because nobody can be experiencing victimhood worse than me.

The trap door closes. We’re stuck in this cycle forever. The BBC used an outraged shock over the inevitable online abuse to award Ms Murray her victimhood medal and she was complicit in her own enslavement.

We all are. How many times have you heard me go on about the fact that services in social care don’t exist anymore? Endlessly! Intellectually and rationally, I know that to be true. But inside another part of me, my expectation of a service and my sense of entitlement as a consumer of that service, refuses to accept that truth. Last night my friend had to help me with a debrief of yesterday’s encounter with the council. It’s too long and boring to go into detail but it was about the damp problem in Steven’s bedroom. In the 35 minutes it took waiting to speak to somebody, I worked myself into victimhood. I felt shaky, I started having fantasy arguments. I even felt a little teary. Needless to say, I didn’t get the matter resolved to my satisfaction. How could it? Services are dead. And it will continue until millions of voices sing that the king hasn’t got any clothes on. And then it’ll get really messy.

I was going to end this post there but the postman has just been. He delivered a card from the Royal Mail offering me several new choices on how to receive my mail. I can determine a specific day and time for all my mail to be delivered en masse. I can choose a delivery destination that best suits me. I can even chose a collection point for a formal handover of my mail. Choice is everything. I am everything. I will get a much better service.

I don’t fucking care. Just deliver my fucking mail whenever you like.

And there you have Steps one to three in a nutshell. Or a nutcase.

The Griot of Cowley

When I started investigating my family tree last week, I was doing it purely for me and trying to solve some of the family mysteries that have rattled away in my brain for years. I hadnt considered the impact it would have on Steven. To say he’s even more excited than me is the understatement of the year.

Steven is interested in people. He also loves stories. Put the two together, especially when it involves people he knows and he can find a hook, and he is in seventh heaven.

By Sunday morning, I’d reached the family layer of my great grandparents. The tree template allows you to upload photos of the people you discover. I don’t have many photos from my parent’s generation – the two main photos I have are the group photo from my wedding and the same from my parent’s wedding. I enlisted the help of the support worker to take zoom shots of the many heads from these photos and once uploaded, I did crop jobs so they would all fit into the profile picture spaces. I like the end result, although the randomness of the photos plays havoc with the visual timeline. For example, the photo I have of my cousin was taken when she went to collect her MBE. She was in her early 60s. Yet the photo of her dad, my Uncle Albert, was taken during the war and he is probably in his late 20s.

Come Sunday evening and Steven wanted to see what I’d been up to. He was instantly hooked. Each photo and story eliciting yelps of excitement. It’s always fascinating watching Steven store stuff on his internal hard drive. He has a look of intense concentration and the odd jerky head movement, which I take to be him filing the information in its rightful place. The look is the same when he’s trying to retrieve something from the hard drive. The 8th hit of The Pet Shop Boys is readily retrievable but locating the name of the keyboard player from Martha & The Muffins may bring about a few jerks. At one point during the narration, Steven put his hand over my mouth. I guess I was going too fast for his download programme.

Steven only needs to be told something once and it is set in stone, to be remembered forever. An hour of telling family stories on Sunday night and he’ll never forget them. Not being able to read or write, verbal stories are Steven’s preferred (only?) mechanism to be part of an historical story. His inner library is vast. The Bodleian stored inside a blue sweatshirt.

Each night since Sunday, I’ve heard Steven rabbeting away to himself in bed for hours. “Mark Neary’s dad is called Grandad John. Grandad John worked with big dogs. Grandad John’s brother’s name was Stanley. Uncle Stanley went on an aeroplane to Australia and never came back to Southall”. I told him that story just the once. Similarly, ” Mark Neary’s mummy was Nanny Beryl. Nanny Beryl’s brother was called Uncle Charlie. Uncle Charlie had a bacon and sausage shop in Southall. Then a new man came to the shop and Uncle Charlie drove massive lorries”. Although it may sound, and may transpire, that after one hearing, Steven will just tell these stories by rote, I can tell they have done something to him. Whether it’s about belonging, whether it’s about connection, I’m not so sure. Maybe it’s because they just strike him as dead good yarns.

In the final episode of Roots, Alex Haley went back to the village of Kunta Kinte. Seven generations had passed. Whilst there, he met the local griot. A griot is a tribal, oral historian. After listening for hours, Haley was finally reunited, 200 years later, with his great great great grandfather. No written records. Simply the oral narrative of an elderly man.

That’s how Steven does it. He’s the griot of Cowley.