Three Smiles & A Rolo

Steven makes a noise. I wish I could find the right adjective to describe it. The nearest I can get to is to liken it to a deep, purring sound. I know what it signifies though. It is the sound of complete contentment. It’s my favourite noise in the whole world.

The purr rang out several times over this Easter weekend. Yesterday Steven was watching an Erasure video on his own. When Andy and Vince got on to their version of Everyone’s Got To Learn Sometime, the purr travelled from the living room down to the kitchen where I was cleaning the grill pan. I approached that dirty job with renewed heart.

The long weekend has also thrown up three delightful smile moments. Melancholic fool that I am, I often find myself ruining a smile moment with thoughts of “what might have been.”

For example, yesterday, with the sun out, I suggested to Steven that he move from sweatshirts to t shirts. He chose a brown, florally pattern one that I’d recently got from Premier Man. The support worker was dead impressed. “Wow. What a great shirt, Steve. You look very handsome.” Steven broke into a huge smile. He has sufficient vanity to be chuffed by a compliment about his appearance. I couldn’t let the compliment rest there. My mind immediately went back to 2010 and all those times I visited Steven and found him in someone else’s clothes, several sizes too small. The social worker dismissed my concerns with, “That’s your issue, Mark. Steven isn’t bothered by clothes.” He was. He is.

Second smile. We were doing our compilation tape on Saturday afternoon. Amongst Steven’s birthday CDs was one of Jason Donovan singing his favourite songs of the 1980s. The track Steven chose for the tape was Jason’s take on “I Just Died In Your Arms Tonight.” We’ve got a long standing joke around that song. In a 1999 episode of Coronation Street, Steve McDonald performed the song in the Rovers in the style of the pub singer. Whenever Steven hears the tune, he demands, “Dad. Put Steve McDonald’s voice in your mouth” and I do my impression. It’s a maximum purr moment. I love it, but I ruin the moment by the thought, who will do the Steve McDonald impersonation when I’m no longer around? (I’ve been having those thoughts a lot over the last few months).

The third smile? ITV3 have devoted the entire Easter weekend to the Carry On films. Yesterday, we settled down to watch Carry On Doctor. It’s got that scene where Barbara Windsor goes to sunbathe on the roof and Jim Dale mistakenly thinks she’s about to throw herself off and goes to rescue her. He gets stuck on the roof and needs rescuing by the fire brigade. It’s always been Steven’s favourite scene and he likes making jokes about “rooftop dramas.” Yesterday’s joke was, “Kenneth Williams, you can’t take your big white book (that’s a reference to Kenny’s published diaries that sit on my bookshelf) up on the roof. Fireman might make your book all Wet with his water hose.” Steven thinks his own jokes are very funny and skips off to the kitchen, laughing his head off. I’m getting better. I didn’t hose that moment down with my own melancholy.

One final Easter moment. Steven had two eggs: A Celebrations egg and a Rolo one. We could hear Steven ripping open both boxes in the kitchen and Francis called out, “Are you going to share your egg with me and Dad?”

We were each presented with a solitary Rolo.

62 Years: My Musical Soundtrack.

The day before I went into hospital was my 62nd birthday. As I waited to be discharged on Friday morning, I revisited my list of my favourite songs from each year of my life.

Here it is. My apologies, but I found 2012 and 2019 to be crap years, so there are two gaping holes in this bonanza.

1959

1960

1961

1962

1963

1964

1965

1966

1967

1968

1969

1970

1971

1972

1973

1974

1975

1976

1977

1978

1979

1980

1981

1982

1983

1984

1985

1986

1987

1988

1989

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

2013

2014

2015

2016

2017

2018

2020

Two Minds

I’m just waiting for Steven to finish his morning shower.

Do you remember Fred Talbot, the weatherman on the Richard & Judy show? He used to deliver his forecast from a floating cut out of the United Kingdom, in the middle of the canal. When he was on the main float of England/Scotland and Wales, Fred looked safe. It was safe and sturdy enough to hold both him and his cameraman. Then he would jump across to Ireland and the crowd would go “Woah”, excitedly hoping he would fall in. On the return leap to England, the crowd’s “Woah” was more muted, expressing its disappointment that Fred had survived another forecast intact.

My mind feels a bit like those two floats at the moment. One is safe and resilient; the other feels wobbly and carries the anxiety that I could fall off quite easily into the Manchester Ship Canal.

I’ll deal with Ireland first. “Woah”.

I’ve got another operation of Thursday. This will be the fourth surgery in just over two years. I won’t know until I arrive at the hospital on Thursday morning exactly what the operation will entail. I’ve had two scans in the past week, but the results won’t be in until the day before the surgery. There’s a very slim chance I may not need the surgery at all. I don’t really believe that though. It will be either more resectioning of one or more organs; or at worse, complete removal of one or more of them. I don’t even know how long I will have to stay in. But, unlike the operation in January, I’m not expecting to be home in time for tea on Thursday evening.

I’ve been at Steven’s since Thursday morning. It was his 31st birthday on Friday. I would have stayed the four days even if the operation wasn’t happening, but being here certainly represents the sturdy, safe area of the UK float. He’s been working his way through all his new VHS tapes and DVDs and has even tolerated me sitting with him to watch some of them. Last night we watched the Erasure Live In Concert DVD . What an underrated group they were. It was filmed back in 2003, shortly after they released their cover versions album, so it includes their versions of ‘You’ve Lost That Loving Feeling” and ‘Everyone’s Got To Learn Sometime”. Steven is familiar with these from the CD and I love the purring sound he makes when he’s reached optimum contentment in his viewing. Ably supported by the stout vocals of the support workers, we’ve sang and danced our way through the last three days and it has been wonderful.

I can enjoy Erasure, but there are some thoughts that I can’t erase and before I know it, I’ve boinged across to Ireland. “Supposing this will be the last birthday we spend together”, is the darkest of the thoughts. I nip off to my room. Have a little cry and a chocolate from Steven’s birthday selection pack and the thought soon passes. But I know it’s not a fanciful, overly pessimistic thought. Fortunately, Steven lives almost entirely in the present tense and he’ll be knocking on my door, demanding, “Dad. It’s A Little Respect. Come and sing.” So, I go and sing and everything is alright again.

We did our usual birthday compilation tape and one song that has to be included every year is ‘Dub Be Good To Me’ by Beats International. That song was number one the day that “Steven Neary came into the world.” Thirty One years ago and whilst we were listening to Norman Cook’s post Housemartins’ adventure, I realised that I was 31 the day that Steven Neary first came into the world. The day before my operation I will be 62. Half my lifetime (so far) has been marked by annually revisiting that popular cover version from 1990. That thought makes me feel like I’m straddling both islands on the canal. It’s purringly reassuring, but at the same time, where has all the bloody time gone!

I’m going back home tonight and for the next three days, apart from my pre-op covid test, have nothing planned. I’ve treated myself to a few DVDs and books for my birthday, so I might sneekily unwrap them a couple of days early and just flop on the sofa. And hope that I don’t spend too much time on the smaller island.

In the meantime, there’s the final part of the birthday marathon to enjoy. Steven’s dressed now and already prompting me that the next DVD cab off the rank is The Beautiful South’s concert on the Jools Holland show.

As they say, You Keep It All In.

Gentlemen

Yesterday, The Independent published an opinion piece written by Jo Brand about care workers. I like Jo and there were some sound points in the article. There was, however, the usual portrayal of care workers as doing hard, boring, unrewarding (on many levels) work with very little job satisfaction. I’m pretty sure that isn’t the case with Steven’s support team, but I worry that it might be. The basic evidence doesn’t support my anxiety. Of the team of five, the longest standing worker has been with Steven since 2005 (16 years) and the most recent addition to the team has been with us 8 years. If the job was that unbearable, would they want to stay so long? I know that their pay is significantly better than it was when they were employed by an agency, but would an extra £2.50 per hour compensate for a decade of daily drudgery?

Whilst Steven was busy doing important business last night, I sat in his living room with the guy on night shift and asked him: “What is it like working with Steven?”

Here are some of the responses:

“He’s taught me about a lot of music from the past that I never knew about. Steven is a good teacher. He’s got good musical taste” (As I type this, I can hear him in the next room ,whistling “Kids In America” whilst doing the ironing.)

“I’ve learned to swim. We don’t do a lot of swimming back in Nigeria.”

“I like doing Steven’s haircut and his shave. It’s good to help him be a handsome gentleman.”

“Steven Neary is an orderly man. It’s nice to help him keep his house in order.”

“I like watching Steven talk about his photos with you. It’s good to see love.”

“It’s good to help Steven do more things for himself. We enjoy packing away the shopping together on Wednesday mornings.”

“When Steven gets agitated, I’ve learned a lot about helping him get back on an even keel.”

He identified some lowlights obviously. He’d rather not have had his spectacles broken twice in ten years and walking into the bathroom after Steven has emptied his bowels can be like entering the village of the damned, but as he said:

“You take the rough with the smooth. There’s a lot more smooth.”

As I lay in bed last night, I thought about my own work that I have been doing for 23 years. Why do I keep doing it?

It’s all about relationships really. Those moments when two human beings hang out together and special things happen. On the day another newspaper report came out about DNR notices being placed on learning disabled people, it’s mightily reassuring to know that Steven plays his part in valuable, meaningful relationships.

The Village That Keeps On Giving.

I’ve had a fascinating week, post operation, where that little village called Seer Green that my maternal ancestors came from has launched an almost daily campaign of tapping me on the shoulder.

Firstly, I contacted the person who posted the photo of my great great grandfather William Worley that I displayed in my last post. It turns out that her grandfather was the brother of my great grandfather Charlie Worley whose story of running the bargeman’s pub, I told in Lines. She has been able to provide me with a wonderful collection of photos of great aunts and uncles and distant cousins that until that point, were just names dangling from a branch of the family tree that I had given little attention to.

My cousin sent me a photo of an old pub charabanc outing to the seaside that she stumbled across. There are some familiar faces in the picture including Nanny Worley and Auntie Wilky and Uncle Bob (stars of my Sale Of The Century story). And standing in front of Uncle Bob is the man that I’ve just become acquainted with: my new friend’s grandfather, Charlie Worley’s brother! I’m not sure why I should be so surprised that these two arms of the family might have known each other, but I always get an emotional rush when I find out how people find each other. It may be a small world, but I wouldn’t want to have to make all the sandwiches.

Then, two days ago, I received an email from a woman who announced that she was from the Seer Green Baptist Church Living History Exhibition. She had read Lines and wanted to know whether I was prepared to donate the diary about William Worley’s time in the workhouse. Obviously I had to come clean and inform her that whilst the events of his life that were mentioned in the diary were true, the diary itself was a plot device I dreamed up in order to tell William’s story. She replied, answering all my questions about the exhibition and ended the email with a throwaway line that knocked me for six:

“You are probably aware that a few years ago, a new housing development was built in the village called Worley Place, in honour of the contribution your ancestors made to the village.”

No, I wasn’t aware. I think it’s great. The Worleys weren’t famous or titled. They had no wealth to bring to the village. But from 1610 and for the next 2 centuries, through their hard work and doubtless much in breeding they helped, literally, to build this small village in Buckinghamshire. I can’t describe how proud that makes me.

Naturally I googled Worley Place and learned two things. Firstly, it’s a very upmarket little cul-de-sac. I can imagine Premiership footballers and people who made their name on Towie living there. One house was sold for £1.8 million only a year ago. Secondly, looking at the estate on the satellite map, I’d hazard a guess that the development was built on the very spot that 220 years ago, my great great great grandfather would have toiled in the brickfields before his unfortunate demise. I think it’s safe to say that neither Harry Kane, nor Gemma Collins will go the same way and end their days in the local workhouse.

One of the aims when I started to write Lines was to examine our current standards and attitudes with those of these ghosts from centuries past. I’m not sure whether I succeeded and I’m not convinced of the value of undertaking such a task. I guess my original motivation was a backlash against the modern trend of being scathingly critical of our past and the parts our ancestors played in it. Worley Place sums it all up for me. I wouldn’t want to live the life that William Worley lived, but at the same time, I’m not too enamoured by the sort of life I imagine the current residents of Worley Place might be living. I know that may be a superficial, possibly harsh, view.

I think I just want to live a real life, with real people, working hard and engaging in real things and real relationships.

To end, here’s some people being real on a real charabanc.

Been Here Before

Back in 2019, I was fully committed to writing “Lines” and I was determined that it was going to be my convalescence project. Needless to say, despite spending hours staring at a blank A4 pad, I wasted my convalescence with endless hours of boxed sets. It was 10 months before I started to put pen to paper.

I’ve always known that “Lines” was part one of a trilogy, but have struggled to get going with part two. Then 10 days ago, I got the news that a new tumour had been discovered and the whole surgery/recovery process starts up again.

Since the news, the universe has been giving me a sharp poke in the ribs. On Friday, I received a notification from Ancestry UK that someone had uploaded a photo of my great great grandfather, William Worley. I’ve always felt that I sold William a bit short in the first book. He only appeared briefly twice and only as a supporting player in the telling of two other characters’ stories. Yet he was the first member of my family to have a connection to Southall and he helped build the town I grew up in. It was my intention to focus the next book on the town itself and William will be a bloody good narrator of that tale.

This morning, the universe dished out another poke. I had to go early for a pre-op Covid test. I got a cab there and back and for most of the journey home, we got stuck behind another vehicle. It was a blue camper van. It had a sticker in the back window, bearing the legend: “Only you see what you see.”

Universe, I’ve seen you. I’ve heard you. If the operation goes okay, I should be home by the end of the week. I’ve already purchased two A4 pads and I have my Christmas treat box of 100 fineliner pens, poised and ready for action.

And in the meantime, I will look at a reflection of me from the 1850s and listen to what the 19th century builder has to say.

1995 Christmas Top of The Pops

As I wrote yesterday, Steven has been a barely contained ball of expectation all week in anticipation of BBC4 showing the 1995 Christmas Day episode of Top of The Pops. We had it on VHS tape for many years and he would watch it at least once a month until it eventually wore out about five years ago.

The big moment came and we settled down with a bowl of cheesy bollocks and wine for me and the support worker and a strawberry milkshake for Steven. Whoever booked Jack Dee and Bjork as co-hosts was a genius: they were wonderful.

Steven was off from the opening number (N Trance singing Set you Free). All the jokes and commentary he had constructed over repeated viewings were recalled in an instant. Coupled with his present tense joy of the reunion:

“Hello Scatman John. Haven’t seen you for a long time. Bee bop bopp babba bo.”

Francis, who was still in Nigeria back in 1995, but has a great pop knowledge, dueted with Annie Lennox and queried the musical talent of Robson and Jerome.

And so it went on. Steven admonished Damon from Blur for eating a christmas cake whilst singing Country House. He joked about Meat Loaf’s massive belly. He said all of Jack Dee’s lines before Jack got them out – “Crikey. It’s Pulp.”

I must admit, I shed a little tear, but I’m game for a bit of Gangsta’s Paradise and was on my feet for Common People.

It could have all gone terribly pear shaped at the end. In the original broadcast, and in the official charts of 1995, Michael Jackson was Christmas Number One with Earth Song. On the old VHS tape, Jack Dee introduced him as being “stuck in a mistral.” I have had to explain many times to Steven what a mistral is and why we don’t tend to get them in Cowley. But last night, they dropped Michael and announced that Mike Flowers Pops was number one with his version of Wonderwall. He wasn’t. Why would they rewrite history after 25 years? It can’t be anything about Jackson because they had already showed two of his other hits. Was there something about that over the top video that is too sensitive to 2020 eyes and ears? I looked across nervously at Steven.

“Jack Dee’s got his silly head on. Mike Flowers doesn’t get stuck in a mistral.”

He takes things in his stride much better in 2020 than he did in 1995.

10 Years

Facebook memories can be a real sod at times. You can be having a fine, chirpy day and then check your Facebook feed to be reminded that it was five years ago today that your budgie went off with next door’s cockatoo.

I don’t need any reminding about the current crop of reminders. Monday 21st December is the 10th anniversary of our first visit to the Royal Courts of Justice and Justice Mostyn’s declaration that Steven could come home immediately after 359 days of being unlawfully deprived of his liberty in an ATU.

Memories of that day are fragmented. Like the old jigsaw puzzle you find on the wardrobe shelf, you know that some pieces are missing, but the bits that are left still produce a powerful picture. I remember waking up to discover there had been a snowstorm overnight and a text from my solicitor to say that he was snowed in at Devon. That set up an immediate gloom with the possibility of all the legal bods being snowed in and the hearing being postponed until the New Year. I remember the overheard conversation in the cafe opposite the High Court as I tried to quell my nerves with a bacon sandwich: “You’ve had ample time. If you don’t come up with the goods today, I’ll have to set Fenella on you.”

I remember little of my 20 minutes in the witness box. I do recall bursting into tears when Justice Mostyn asked me: “If I allow Steven home today, tell me a little of what his life will be like.” I rambled on about Mr Bean and The Pet Shop Boys and suddenly all the things that give Steven his quality of life, but the ATU team hadn’t given a toss about were laid bare for the court. I remember the absolute kindness of Amanda and Sophy and Asweene and how they kept checking that I was coping with the knife edge drama. I remember the sweeping physical sensation of relief as the judge delivered his judgment.

I recall the awkward conversation with 2 senior Hillingdon managers outside the courtroom as we cobbled together a hasty return home support plan. Such had been their confidence in getting their way that they had refused to entertain the idea beforehand. I remember the tube journey home and texting everyone I knew in the whole world with the good news. I updated the loyal, expectant Get Steven Home Facebook group and got through several tissues as the replies poured in.

And best of all, I got home with 10 minutes to spare before Steven arrived for one of his fake transition home visits and was finally able to break the news to him. I felt sorry for the member of the ATU team who accompanied Steven as he looked so ill at ease amidst our unbounded joy.

10 years and boy, how much our lives have changed since that historic announcement. Quite a few things happened in the next couple of years that could have seriously derailed us, but instead turned into positive, life changing moments. I lost my job because some of the management team were uncomfortable in me, as a counsellor, suddenly having a public profile. But that led to me setting up my own practice, firstly in the beautiful arts centre and then later, in my flat. Then we had to deal with Hillingdon’s revenge tactic of making us homeless and another whole year of stress and uncertainty and dreadful money problems whilst we waited for an outcome. For the second time in two years, Hillingdon embarrassingly lost their case in court, but the court case came too late for us to hang on to the Uxbridge house. However, it all started the sequence of events that led to us becoming Cowley Boys and getting the home that means so much to Steven.

I’ve probably mentioned it before 😅, but I’ve had five books published since 2010. I’ve always written throughout my life, but the platform that the case afforded has made a very special dream of being a writer come true. I’ve travelled the length and breadth of the UK telling our story and made some truly sound relationships along the way. I’m still not convinced that telling the story has made much difference in the wider sense to people in the same situation that Steven was in, but I know that I will still get involved in campaigns like Rightful Lives and Every Death Counts because it doesn’t feel like an option, not to.

Obviously there are scars. 10 years on, Steven isn’t completely reassured that the same thing wouldn’t happen again. Whenever he gets anxious, the anxiety is normally focused on his home and he implores us to reassure him that, “Steven Neary is staying in the Cowley house forever and ever.” I lull myself into the idea that my anger has dissipated and then, like the other day, I stumble into Linked In and notice that Whistler’s Mother has finally left Hillingdon, but is still employed in the field, and I find myself revisiting old, familiar revenge fantasies. And although we currently have a great relationship with the present social worker, something never changes in Hillingdon’s overall performance. Just a couple of weeks ago, I read about their latest court defeat and that arrogant, superior culture still seems to thrive. Most of the staff have changed, so it must come from the top.

10 years is a bloody long time that at times can feel like a fortnight ago. Take That, singing The Flood was the soundtrack to the night Steven made his great, barefoot escape from the ATU and when I hear that song today, I still classify it as one of Take That’s most recent hits. But when we look in the mirror, we know that it has been a full 10 years. I am now in my sixties and Steven is 30. I don’t torture myself with “what would he be like if he had been sent to the hospital in Wales” games anymore. I can rest easy with the reality of a 30 year old man, who has matured, who understands the world better and has managed to retain his humour and his hope. That’ll do for me. I think I have achieved the same.

Time, and the mashing of time, feels very prevalent today. As usual, I purchased the Christmas Radio Times and Steven was beside himself with excitement that tonight, BBC4 are showing the 1995 Christmas edition of Top of The Pops. It was the year we adopted Steven and we had the programme on VHS tape for many years before it got mangled. 25 years ago and time to get reacquainted with The Outhere Brothers and Jack Dee and Bjork as the two hosts. We will sing and we will dance and 25 years of memories will rotate like the images at the bottom of a child’s kaleidoscope.

10 years. 25 years. It’s just life really.

The Cost Of A Bonus

Yesterday, I got involved in a Twitter conversation which began with Rob Mitchell tweeting a call out to LAs that if you are asking your clients who are receiving direct payments for a receipt for a strawberry Mcshake, you have moved into a position of oppression. Although, I don’t like that over-used word, I agree with the sentiment of the statement. I am surprised though that anyone would think that direct payments can be administered in any other way. My reality of receiving them has been characterized by power games, distrust and micro management from day one.

I’ve told this story before, but it’s worth telling again because it demonstrates all too clearly how the markers were laid down from the beginning. I had received our first monthly direct payment allowance. It was my first experience of being an employer and running a payroll. It was the first time I had received a sum of money and from that, I had to pay five support workers and set up a contract with the cab firm to pay for Steven’s travel. It was also at this time, that the Direct Payment team insisted that all payments must be made to and from a pre-paid card. Being new to this, I didn’t know at the time that they were meant to offer a choice over how you received your budget and couldn’t force all their service users down the pre paid card route.

So, I’m sitting at my computer, with this card by my side and decide to pay the first lot of wages. I selected the first support worker alphabetically and entered his bank details. Confident that I had entered the details correctly, I clicked on “OK” and a message appeared. My blood ran cold. The message told me that I had successfully paid the entire personal budget for the month into this worker’s account. Current balance = zero. I still had four other workers to pay and the cab contract to set up. I panicked. I phoned Michael to tell him what I’d done and to ask him to please pay the money back to me as soon as it appeared in his account. He found it quite amusing, but I felt like I’d been discovered, crouching in the vault at Hatton Garden.

Twenty minutes after clicking on “OK”, the landline rang and it was the direct payments manager. The games began. “What on earth do you think you are doing, transferring the entire monthly budget into one account? That is not how you are meant to do it. I will have to refer this upwards.” I was a grovelling mess and all I could do was keep repeating that it was an honest mistake and that the money should be back on the card within 24 hours. It was only after five minutes of the DP manager becoming even more puffed up and me shrinking even further, that a thought hit me. “By the way. How did you know about this? I only did it 25 minutes ago.” I could feel the smug, winning smile from the other end of the phone. “Mr Neary, it is my job to monitor everything that happens with this account. I can see everything you do from my end. That’s the beauty of the card. It’s all here on my computer screen.”

That was day one and the rules were made clear. The power dynamic was set and the tone of our relationship established. And of course, my elementary error, played right into this culture. At best, I was a fool, incapable of managing a personal budget: at worst, I was on the make and not to be trusted with funds from the public purse. That was 2013 and seven years on, things are just the same. I made the mistake of thinking that perhaps I had to earn their trust. 7 years experience has shown me though that it doesn’t matter. I am meticulous with the account, but that is irrelevant. The base camp position of the LA is to distrust. I assume it’s not personal. I’ve met other local carers and they describe similar experiences of the power games. I suspect that stakes are slightly higher with me. After a few months, I got wise about the pre paid card and insisted that the money be paid into a bank account, set up for the purpose. I do find it easier and we could never work out how to pay individual cab drivers with the pre paid card, so it works for everyone on the receiving end of the personal budget. It doesn’t work for the direct payments manager as she can no longer track my every movement from her computer screen and I suspect that rankles.

Steven’s personal budget is tightly controlled. It covers just two things: the support worker’s wages and the cab fares. Rob’s tweet surprises me because I wouldn’t dream of buying a milkshake from the funds. If nothing else, it would send the DP manager into a fit of apoplexy. I don’t know how people manage to get their LA to agree to fund things like leisure expenses. Part of me doesn’t agree with that in principle. I pay my gym fees out of my wages; isn’t it right that Steven pays for his swimming fees out of his own income? I’m still shocked by the man on Facebook, many years ago, who proudly announced that his son was going white water rafting in Iceland (the country, not the shop) using his personal budget. “Mr Neary. I can see from my computer screen that ten minutes ago, you purchased six croissants from a bakery in Reykjavik. Do you care to explain yourself?” It doesn’t bear thinking about.

The tightness of the control means there is no slack whatsoever. Yesterday’s tweet was about me paying each of the support workers a bonus for the extra things they have done during Covid. They have been marvelous. Picking up shopping on their way into work. Decorating the whole house. Doing extra hours. Thinking up different things for Steven to do when all his usual activities got cancelled. I like to be a human employer. I don’t really want to be a boss and I’m certainly not interested in mirroring the power plays that the LA models. Unfortunately, there’s no scope within the budget, to adopt that tone of management. Well, at least when it comes to financial matters. Seven years on, I am still distrusted to the extent that the LA insist I complete a monthly audit form. With bank statements and receipts for everything. I dutifully sent off the July return, with five entries that showed the “bonuses” and within a day got an email reminding me that bonuses were not budgeted for and therefore not allowed to be paid for out of the personal budget. I could have argued the toss and it would have dragged on for months. I didn’t and reimbursed the direct payment account from my own funds. In the meta scheme of things, it was more honest anyway. The bonuses were a human gesture from me to the staff and personal budgets are not really designed to be human. It was more honest, and less sullied, to keep the transaction between me and the support workers and not bring the micro managing machine into the deal.

I’m not moaning about any of this. As they say, it is what it is. I’m not expecting or asking for anything different, mainly because anything else is beyond the LA mindset. I know my place, and after 7 years, I can begrudgingly accept it. But I occasionally need some sport and I like to play with them. I like to imagine the faux outrage in the council offices when they spot something sinister on my monthly audit returns, so from time to time, I slip in the odd £2.99 for a Culture Club CD. I amuse myself by composing, cap doffing email replies after my abusing the public purse to the tune of £2.99 has been discovered. I try to turn my relationship with the LA into a bad 1970s sit-com. You remember those storylines where Sid James and Diana Coupland (or perhaps Richard O’Sullivan and Paula Wilcox) would be house sitting next door’s parrot whilst the owners were away on holiday and Sid wakes up one morning to find the parrot dead on the floor of the cage. Whole episodes were built on the farce involved in trying to hide the fact that they may have killed the parrot. I approach the direct payments in much the same way. They are a farce. A contrived dance. And with the best will in the world, such are the complications of the dancesteps that you can quite easily discover that you’ve got a dead parrot on your hands and your fate could be just as bad….

Don’t get wound up. Don’t get on a soapbox and demand change or respect. It’s not going to happen.

Have some fun with them instead.

If nothing else, it’s a diversion from the utter humiliation of being a direct payment recipient.

Museum Pieces

Steven’s VHS player packed up yesterday. I was surprised how much stuff it triggered off for me.

Apparently, it failed on Monday evening when Steven put on his Billy Ocean video. The support worker reported that Steven was pretty calm about it and eventually put on a DVD instead. When I arrived yesterday morning, the first thing Steven said to me was, “Come into the living room, Dad.” And once in the living room, he made his expectations quite clear: “Dad’s going to mend the video.” It brought home again that despite the wonderful relationship he has with his support workers, he still looks to me if there is any “sorting out” needed. We all encourage him to go to the support staff for issues like this, but in his head, I remain his default sorter outer.

The demise of the VHS player brought up again that Steven is at his most content with items that in 2020 are frankly, museum pieces. He still wants his CDs, despite our attempts to educate him on streaming. He will choose a VHS tape or DVD over watching something online everytime. When Steven gets anxious about something and is looking for reassurance, his script focuses on the things that he sees as the anchors of his life: “Steven Neary will have his videos, DVDs, CDs, Books and food in the Cowley house, forever and ever.” I cannot see that changing to “Steven Neary will have his IPad, Netflix, Kindle….”

In Lines, I wrote about my discovery of the children’s library at Dr Pragnell’s house. I got a reassuring pleasure as a boy, stroking the spines of the books. 50 years on, Steven is similar. Before he puts a video cassette into the player, he goes through an elaborate routine. He caresses the case; he touches each of the photos on the sleeve; he sniffs the cassette. It’s a total sensory experience. Every physical belonging comes with it’s own sensory routine. Playing a CD involves a twirling action of the case, several times before he looks for numbers he recognises in the sleeve notes. Books and photo albums are smelt and individual photos stroked. These actions never lose their importance to Steven.

The video breakdown also transported me back to 2010 and I found myself having a fantasy argument with the positive behaviour team. Back in the ATU, they saw Steven’s attachment to his collections as a negative thing; something that needed to be broken. I was furious with that discriminatory position back then, and still am. Most people have hobbies. Lots of people’s hobbies involve collecting things. There was also the suggestion that Steven was wasting his money on these things; that there were more acceptable things he could be spending his money on. Isn’t it bollocks? And total prejudice. Would they take the same position with a non disabled person who spends £50 per week following their football team? I like my collections too. Just last week, I came across one of those polls of the top 100 British films of all time. There were 11 in the list that I don’t have in my collection, so a quick browse through Amazon and £37 later, I’d updated my set. It’s good fun and fulfilling. How dare someone decide that Steven should be denied the same pleasure?

The good news is that I was able to order a new (reconditioned) VHS player and it’s being delivered today. Steven can have his weekly EBay browse and buy two new music vhs tapes each Tuesday and Thursday. There will come a day when he will no longer be able to do that for several reasons, but for the time being, let him find his meaning and enjoyment and purpose in Billy Ocean’s greatest hits.