Restricted

It’s that time of the year again. Or that time of every two years. The renewal of Steven’s Community Deprivation of Liberty order.

This one didn’t feel painful in the least. One hour on Tuesday morning for the mental capacity assessment. One hour on Thursday afternoon for the best interests meeting. And then, 20 minutes yesterday afternoon to read the final report. The whole thing has reignited Steven’s anxiety about being able to “live in the Cowley house forever and ever”, but we’ll deal with that.

I actually enjoyed the mental capacity assessment because it demonstrated how much Steven’s confidence has grown since the last one. The assessor did the usual annoying thing of repeating the question that he’s just asked. In the past, this has really thrown Steven. You can see him thinking, “Oops. Did I get it wrong first time?” I enjoyed this little exchange:

Assessor: “Steven, do you go to the shop on your own?”

Steven: “NOOO.”

Assessor: “Why do Alan and Des go with you to the shop?”

Steven: “Alan carries the milk back to the Cowley house.”

Assessor: “And what might happen if you went to the shop on your own?”

Steven: “Steven Neary might get knocked over by a car.”

When the assessor asked the same questions, five minutes after asking them the first time, Steven didn’t hesitate or become flustered, but said exactly the same thing as he said first time around. I felt so proud of him.

Two days later we had the best interests meeting. This one was on Zoom. Steven was watching a Top of the Pops DVD in the living room, so I dialed in to the meeting from my tablet in my bedroom. The two support workers did the same from Steven’s bedroom. It produced a strange stereo effect. I could hear them on my tablet and I could hear them from the next room. It all went swimmingly until the final question, which initially was directed to Michael:

“So, Michael. To conclude, would you say that all the restrictions on Steven’s liberty that are in place, are in his best interests?”

Silence….

“I’ll let you think about that. Alan, do you have a view about the restrictions?”

Silence…..

I started to laugh. One of those awkward, embarrassed, the-king-has-got-no-clothes-on laughs. The silence went on uncomfortably long. At one point, Alan asked, “Restrictions?” but we were all struggling. I had to speak up:

“The thing is it’s the word ‘restrictions’ that throws us. There’s not a single aspect of Steven’s life that we ever frame as being restricted. We don’t see Des going to the shop with Steven as a restriction. We don’t see Michael cooking a Toad In The Hole as a restriction. We don’t see Alan doing Steven’s shave as him being restricted. Three months ago, you did Steven’s care plan reassessment and all these things were seen as positive. They were all aspects of his care arrangements that give him his independence; give him his liberty. It’s hard for us to suddenly flip them over and see them as restrictions on Steven’s liberty.”

So in order to get the whole process over and done with and for the assessor to get on with completing the forms for the Court of Protection, we all agreed that the many “restrictions” on Steven’s life are in his best interests and are the least restrictive option for his care. Boxes ticked. The council can now pay the extortionate Court fee and we don’t have to think about Community DoLS for another two years. Of course, there’s a part of me that would love to challenge all this nonsense. I know that there are several legal bods chomping at the bit to get a Judge to look at this pantomime. I actually believe that Steven has the mental capacity to understand (most of) and consent to his care arrangements. I don’t believe his liberty is being restricted in any way whatsoever. On the one hand, it sticks in my throat that I’m colluding with the debacle, but on the other hand, I have neither the energy or enthusiasm to launch a court challenge over what is a principle. The reality is nothing bad is going to happen to Steven as a consequence of the Community DoLS. Nothing good comes from it either. It is meaningless. Two stressful hours every two years and for the rest of the time, he’ll get on with the business of living his life.

After the assessor left, I showed Steven an advert on Facebook for a concert next June with Paul Heaton & Jacqui Abbott and The Proclaimers. I told him that we could get tickets. He was beside himself with excitement. He even told the Iceland delivery man about the concert.

Next June, as we sit at Doncaster FC singing “Give me one last love song to bring you back. Bring you back”, I can’t imagine any of us thinking that we are being restricted.

One thing’s for sure. If Steven was in any other type of living arrangement (an ATU, a residential home, supported living), he wouldn’t get within sniffing distance of Craig and Charlie.

Who’s Interested?

Last week I published a post about my cousin (3 x removed) Fred and the story of his sentence for murder in 1877. I’ve discovered a lot more in the past seven days and those discoveries, together with a couple of news stories and the imminent event of Steven’s latest mental capacity assessment to decide whether he has the capacity to consent to the care arrangements in his own home, have truly frazzled my head. All this has returned me to a familiar theme that I’ve written about on this blog before and in “Lines” – how have disabled people, and people with learning disabilities in particular, been included/excluded from society over the past 200 years?

Fred was found guilty of the murder of John Collins in February 1877 and sentenced to death. Two days before his execution, the home secretary intervened and Fred’s sentence was commuted to life imprisonment. He served 17 years of his life sentence, but in 1894 he was released and never returned to jail for the remainder of his life. A week ago, I had no evidence to understand why his sentence was cut short in 1894. I still don’t have a definitive answer, but a couple of useful bits of information have come my way and I think I can make some reasonable assumptions.

The defense case at Fred’s trial was built almost solely on the fact that he had epilepsy and their claim was that he had a seizure at Mr Collins’ house and whilst in an unconscious state, committed the murder. Certainly, not just from Fred’s recall of events, but also from the witnesses, including Mr Collins’ widow, there seems the strong possibility that Fred did indeed have a seizure on that fateful morning. I have read the 19 letters that were published in the BMJ in the months following the trial where eminent physicians of the time argue one way or another about the likelihood of the killing taking place whilst in an unconscious state. The four court medical experts were split into two distinct camps over the issue. What is very clear from the letters is that, although epilepsy had been around for hundreds of years before Fred’s trial, the medical profession were in the very early days of understanding the condition. I’m no medical expert at all, but even I can see that they were all being very speculative with little research or case history to support their arguments. There was clearly enough doubt for the Home Secretary. Did the doubts grow even stronger over the next 17 years?

I was sent a fascinating article from the Prison Service Journal that looked into the experiences of “physically and mentally disabled inmates” in late Victorian era prisons. It’s a thorough document, but also reveals that even by the 1890s, there was still much discussion about whether epilepsy was a mental condition, physical or both. What stands out in the article is that a lot of thought was being given to the purpose and appropriateness of disabled people being in prison and was prison the best place to equip them for a meaningful life on the outside. Even though, he was serving a life sentence (negating consideration of a life post jail), Fred appeared to fall into this categorization and it looks like that it was decided that to prevent his further “sinning”, his rehabilitation would be better served outside the walls of the prison.

It took me a while to track down where he was discharged to, but I eventually found that he was released into the services (?) of St Giles Christian Mission. The Mission had been founded in the 1860s to provide refuge for orphans, but pertinently, two years before Fred’s release, it had extended it’s arm (s) to include ex prisoners. The history section of their website makes for interesting reading. Apart from the obvious of providing shelter and food and a Faith, St Giles also took it upon themselves to equip the ex prisoners with a trade. Prior to his imprisonment, Fred’s short work career had always consisted of shop work, but a couple of years after his release (and in future documents) I see him described as a painter and decorator. I guess it’s possible that St Giles may have been behind that change of direction. Whoever was responsible, and whatever part they played, it seems apparent that someone was interested in him, perhaps not as an individual, but his well-being and the opportunity for the Freds to take their active part in society.

One evening last week, I watched the Martin Freeman episode of Who Do You Think You Are. His great grandfather was blind from about the age of two and spent most of his childhood in a residential school for the blind. Martin was shown several photos of the school from around the time his relative was there and of course, it looks very institutional in appearance. 60+ children housed in the place and pictures of rows of similarly dressed boys and girls sitting down at long trestle tables for their meals. The language used to describe the children was harsh by 2021 standards. However, Freeman was clearly moved deeply by the school’s commitment to prepare his great grandfather for adulthood. The school encouraged his musicianship and he eventually became a church organist in the village he settled in adulthood.

This took me back to something that I’ve written about several times before, and fast forwarding 60 years from Freeman’s ancestor’s experience at the blind school, I thought about the experience of my two “deaf and dumb” cousins in the deaf school in the 1950s and 1960s. The younger brother, Gordon, was trained in car mechanics whilst at the school and that became the trade for the rest of his working life. He also became a very successful international rally cross driver. His brother Philip, showed a similar bent, although not necessarily for motors, and could turn his hand at fixing all manner of household objects that needed repairing. He was never out of work until he retired a few years ago. Whatever their motivation, the school obviously saw it as their job to provide the footing for the children’s future. The kids may have had to attend an institution to get that footing, but the ethos certainly didn’t assume an institution for the person’s future. On the contrary, the ethos was about contributing to and taking your place in society. From their starting point of different institutions, Fred, Mr Freeman, Philip and Gordon definitely achieved that.

When did it start to go wrong? This week George Julian has been live tweeting another inquest; this time a 13 year old boy called Sammy. Each tweet carries it own horrors, but one of the stand out horrors for me is that absolutely nothing was available to support Sammy. His local children with disabilities team didn’t even consider him for an assessment. With the obvious provider/coordinator of a service taking themselves out of the picture, all the other bodies were left scrambling about trying to give the appearance of giving a service. Is an assessment a service? Is a multitude of MDT meetings a service? Is signposting to a local parent’s group a service? I think not, but a huge amount of time, energy and resources went into these activities. The whole question of what might be useful for Sammy and his family wasn’t on anybody’s radar. Nobody could even consider or care about his present, let alone think about his future. There is no sense at all from the professional’s evidence that they saw Sammy as being part of a community, a part of life. He was placed in that strange space that I’ve only ever witnessed within social care that is perceived by the professionals as having no connection to the rest of the world at all. It really is a non human, nothing space, but to double the pain, it is presented as being an active, caring space. If there was a service, it was a self-service; a service for and to themselves. It is a world away from St Giles or the blind school.

On the bus into Uxbridge yesterday, these memories plus the stories of Fred and Sammy were swimming around my head. I was scrolling through my phone and noticed someone had posted a photo of Southall FC first team squad from about 1974. It reminded me of all those games, home and away on the supporter’s coach, that Philip and I went to throughout the Seventies. Philip was the heart and soul of those coach trips. The players, our fellow travelers, the opposition supporters would engage with him and we had a whale of a time. It never once occurred to me on any of those excursions that Philip was ripe to be on the receiving end of a disability hate crime. He wasn’t on the periphery of things; he led things. I arrived in Uxbridge and the supported living crew were having a morning out. Two women in their wheelchairs had been parked up and they were looking aimlessly through the window at WH Smith. One of the support workers was on her phone; the other wolfing down a Greggs sausage roll. They couldn’t have been more disinterested if they tried. Not so long ago, the two women would have gone to one of the borough’s day centres. Far from ideal places. But a darned sight more inclusive than window shopping in the mall.

I hope I’m not accused of wearing rose tinted spectacles. Some terrible, horrible things happened to disabled people in the 1800s and 20th Century.

But something has gone, I think gone forever. The things that meant something, have long gone, but it’s worse than that. In place, is the pretense that something exists, something valuable. That’s the cruelest aspect of the present tense.

Cousin Fred

When I wrote “Lines”, although the majority of the characters were from the 19th century/early 20th century, I was determined to make the book as much about the present as the past. One of my aims was to look at mine/our current values and see what we’ve gained and lost since those very different times. At the time, I hadn’t met Cousin Fred. I was finally introduced to Fred on Saturday.

Fred was the son of my great great grandmother’s brother. Her nephew. My cousin, three or four times removed. Fred’s story opened up very quickly over the weekend as there is a lot about him on the internet. Fred is the first murderer I’ve discovered in my family.

In 1877, at the age of 20, Fred murdered a Mr Collins, who was the uncle of a young woman that Fred was stepping out with at the time. From the transcript of the trial, it seems that Fred expected his request to marry Collins’s niece to be turned down and due to other negative things that were happening in his life, was intending to take his own life. In the event, he turned the gun on Mr Collins instead and shot him.

Why am I writing about this? What value has it got to today? I’ve woken up and read another excellent article by Ian Birrell in the I News. He writes about the latest St Andrews scandal and the appalling inhumanity shown by all the professionals involved towards the people incarcerated in such places. It was a familiar theme from Ian, and one despairs that the message never changes. But the article also returned my mind to Fred.

Much of Fred’s counsel’s case rested on the fact that he had epilepsy. In fact, one witness describes many members of Fred’s immediate family who also had epilepsy. The Judge devotes a considerable part of his summing up to the fact that Fred had the condition. Several expert witnesses were called to offer their opinion as to whether Fred could have committed the murder “unconsciously” after a seizure. After the trial, there were letters published in the BMJ, debating the issue. The language used, compared to modern day terms, was harsh. It refers to lunacy and imbecility. The medical profession were in the very early days of understanding the impact of epilepsy and draw several links between it and potential mental health issues. It’s all very rudimentary, but there is another feeling that you don’t hear so much of these days. Fred comes across as a man. A human being. He is not an “F”. He is not expressed in bed terms.

Cousin Fred was found guilty and sentenced to hang. A date for his execution was set for 15 days after the judgment and he was sent to Chatham jail to await his fate. And then, two days before the execution, the home secretary intervened. It seems he believed there was enough doubt about the consciousness matter and ordered the sentence to be commuted to a life prison sentence. The debate continued in the medical and more general press.

Fred remained in prison for the next 17 years. Unfortunately, what happened next is the part of the story I’ve not yet been able to piece together. In 1894, Fred was released. Within two months he was married and lived until 1939, in Southall and doesn’t appear to have fallen foul of the law again. Why was he released? It seems decidedly unVictorian for a murder sentence to be quashed on account of good behaviour. Did the medics learn even more in the 17 years after his trial to raise even bigger question marks over what happened?

Fred’s case happened nearly 150 years ago. From the judge, to the medical experts, even to the witnesses who were regular residents of Paddington, there was very little “othering” going on. The severity of his crime was never played down, but the humanity of the man was also recognised too.

We’ve lost that. Hardly anyone currently residing in an ATU has committed a murder, but they are afforded less humanity than Fred. The language we use today may have a more palatable sheen, but it is performative.

We don’t care anymore.

It’s My Life

I think I’m finally finding some resolution to something that has been bothering me for the best part of two years. I seldom blog these days. I don’t engage with social media very much; still less, share details of mine and Steven’s life.

I often get feedback along the lines of “I’ve learned so much from what you’ve shared about your life.” In the past, I would have just accepted the sincerity of that statement and almost be flattered by the connection that had been created. Now, I feel a little different about being someone’s learning experience. To learn from someone’s experience, you have to chew over what they have shared, make judgements about them and their decisions, detach yourself from an emotional investment. I’m not being critical; that’s how it works. It can’t work any other way. I guess that I’ve become less interested in putting myself out there for public consumption.

Funnily enough, it wasn’t a story about me or Steven that brought this to a head. I received a private message on Facebook after I published “Lines” from someone who I’d engaged with many times over the years. It was a long message, both critiquing and and praising the book. But it ended with a judgement on me: “I have to say that I am disappointed in you as you are obviously proud of your great grandfather who was connected to the slave trade.” I can’t tell you the time I’ve spent mulling over that sentence since August 2020. I’ve never replied to the message. I’ve composed many replies in my head, but they always come from a position of me justifying this man’s life. (For what it’s worth, he was in the navy and was sent to one of the Colonies in the West Indies, 50 years after slavery had been abolished).

This has been a learning experience for me. What is it about a judgement about a man who I never knew, who has been dead over 100 years, but of whom I’ve grown profoundly fond of as I’ve learned more about him? Whatever it is, it has brought into focus the many times the same sort of thing has happened where the attention has been focused on me or Steven. As I’ve written so many times, needing social care, open up your whole life to scrutiny. I’ve been to MDT meetings about us where whole sections of the meeting have been devoted to deciding whether Steven eating a bag of Maltesers is a wise thing. I hope it doesn’t sound like hyperbole to say that when you’ve got MDTs in your life, and you’re receiving direct payments to arrange support, and you’re a court appointed deputy so you come under the scrutiny of the Office of the Public Guardian, your whole soul becomes under the microscope. Every action, word, emotion you express is material for professional discussion and judgement. As regular readers will know, this has never sat easy with me, but you have to learn how to live with it because one of the early lessons you learn, is that the system isn’t going to change just because you’re uncomfortable with it. A carer doesn’t invite any of this, except to ask for support in helping their family member live a meaningful life.

One other factor in me feeling like I do know goes back to the time of my first operation in October 2019. The day after having a tumour removed and really struggling with the agony of the catheter, I was laying in a hospital bed having to sort out a problem on the phone between two of the support workers who had just had a blazing falling out. Unfortunate timing obviously, but I learned that I couldn’t expect them to take into account whatever predicament I might be in at any given time. I am the boss and it is my duty to take the responsibility. This is one of the illusions of social care: even if any of the people from the MDT had been around at the time, they wouldn’t have been interested in getting involved in helping me out. It would be too much at the coal face for them. (Once again, I’m not knocking the professionals here. It can’t be any other way.)

The other day I was sent a copy of a letter that my hernia consultant had written to the cancer consultant. At the time of him writing, the hernia operation had been delayed again pending the results of my MRI scan. The hernia chap, responding to my frustration, wrote a very supportive, cajoling letter which had the opening sentence: “I am writing to you about our mutual patient, the interesting, Mark Neary…..” I was delighted that he was backing me, but what’s with the “interesting?” Is it my medical condition that is interesting or was it a more general observation about me? And what if I’d been seen as “uninteresting.” I know that medics like this sort of stuff, but it’s another reminder of being judged for no obvious purpose.

I couldn’t sleep last night. Another matter among the support team has arisen that needs my intervention. I found myself running over the events of the day with Steven. Who found Abba’s Christmas song on You Tube for his attention? Who told him that Astro from UB40 has died? Who ordered the new tracksuit bottoms from Premier Man? Who went through the photo album, reminiscing about the holiday in Weymouth in 1999? It was me, obviously.

Steven’s life is someone’s item five on the agenda at a MDT. My life is someone’s learning experience. But the living of that life is down to him and me. And the minutiae of making that life happen is down to me.

My apologies, but I’ve become suddenly very protective of that. And not acknowledging that reality is playing into an illusion that I can’t do anymore.

Wrestling

I’ve been wrestling with quite a few issues over this past month. And I’ve just discovered that I’ve got an unexpected week off, this coming week. All my clients are either going on holiday, have other medical appointments or have jobs around the house that need attending to. This might just be the kick up the bottom that I need.

The matters that I’ve been wrestling with, in no particular order, are:

1. What am I going to decide when my treatment/investigations start up again in September? Am I ready, both physically and mentally, if more surgery is needed?
2. What is the next book going to be about? I’ve got two ideas floating around. Will it be a direct follow up to Lines, or something completely different?
3. Am I too old to still be a counsellor? I see the direction my professional body is going in and I find it hard to square that direction with my fundamental beliefs of what counselling is all about.
4. Do I still want to manage a direct payments package? Do I want something less stressful. Or is this just a sign of my weariness, tangling with issues 1 to 3 above?
5. Can I do anything to make Steven appreciate 1970s disco more?

The first one is a bit of a no brainer. What’s the choice? Carry on or stop? Carrying on comes with no promises, but stopping does. I don’t want to stop and die before Steven can name each member of Tavares and knows all the words to Strut Your Funky Stuff. So, I suspect the autumn will bring more backless gowns, more cameras up the willy, more catheters. The new costumes and accessories of my life.

For the next book, I was planning on picking up on the theme of stoicism. I’ve carried on the research and found even more relatives, doing incredibly stoic things. I’ve also discovered a branch of the family that I fear, if I include them in the book, I will be cancelled. Researching one of my great grandmothers, I found a whole branch of her family that emigrated to America in 1770. That led me to discovering Ichabod Quinn, the grandson of the original migrant. I came across a fabulous American archive site that holds letters from ordinary citizens and it had half a dozen letters that Ichabod wrote to his wife who was left to run the farm whilst he was away fighting in the Civil War. They are shocking and touching in equal measure. He is obsessed with the welfare of the pigs and doubts that his wife is fulfilling her duties in tending to them. But the letters also reveal that the Quinns had slaves, most notably a man called Tom, who was the only person that Ichabod trusted to look after the pigs. I’m finding it deeply uncomfortable encountering this history, but it happened and I have to decide whether it is a story to be told.

I keep harking back to 1999. At the time, I was working for a local counselling agency. My first young, male client was a chap called Charlie and quite quickly within the agency, the management decided that I was pretty good at working with young male clients and it began the best time of my working life. Over the space of a few months, I got several referrals, all young guys in their early twenties and totally unexpectedly, I discovered my niche. They became my main client group for the next ten years. 22 years on, I am 22 years older and I’m not sure that I serve that client group as well as I used to. The world has changed. I don’t understand their reference points as much as I did. Perhaps the generation gap has grown too wide? And I don’t belong in my professional association anymore. My copy of Therapy Today arrives and it goes straight in the bin, without leaving its wrapper. Even without the generational problems, I’m expected to work with them in a way that goes against everything that I believe about the nature of the therapeutic relationship.

I don’t really expect to give up the direct payments package. Like with the cancer treatment, what’s the choice? It’s the same old, same old, really. After 12 years of this, I’m tired of the endless micro management and distrust that my council seems to have towards all its clients. The anticipation of threat haunts me. The other day, I ordered Steven a new bookcase from Amazon. At the checkout, I accidentally used the direct payment card instead of his. I immediately rectified the error and transferred the money accordingly, but sweated buckets, awaiting the phone call from the direct payment’s manager who surveils your online activity from her computer screen. Nothing happened, but history has taught me to be wary: “Mr Neary, my job is to protect the public purse.”

The good news is that I can snap out of my weariness and naval gazing with the opening bar of a disco classic.

After all, who can lie on the sofa, meditating about mortality, slavery, one’s career and the petty bureaucracies of local government when Sylvester starts telling us that You Make Me Feel Mighty Real…

Come on, Steve. Put your dancing shoes on.

Putting The Mockers On

I’ve done it again. Why do I always put the mockers on really special moments and turn them into painful experiences? Is it just a sign of getting old? Is it the legacy of three years of cancer treatment? Is it because I’m acutely aware of the possible perils of Steven’s future? Is it because I’m just a miserable old git?

We’ve had a perfect weekend. Two very special, bonding moments, inevitably both music related.

For the last 10 weeks, Steven has been glued to a programme on Channel 5 on Friday nights. Each week, they have presented the top 30 best selling songs from each year of the 1990s. Having been born in 1990, the decades represent Steven’s 0 to 10 years and he can still touch the memories of that period in astonishingly fine detail. I’m not with Steven on Fridays, so we’ve watched the programme in our respective placements. When I got to Steven’s on Saturday morning, the support worker told me that Steven had taken himself off to bed early the night before and missed the last episode, 1999.

Later that evening, I found the programme on My5 and we settled down to watch it together. I delight in Steven’s commentary: “The Vengaboys are getting on the Vengabus and going shopping in Liverpool to buy some pepperoni pizzas.” It’s one of those talking heads shows and Steven even gives a commentary to their commentary: “Pete Waterman needs a shave. Faye from Steps doesn’t want to touch your itchy beard.” There’s an in built demand on me during the whole programme. It’s that I remember all the memories Steven is recollecting and understand all his reference points and can join in on the flights of fantasy. So, to the Pete Waterman observation, I can reply: “Yes. H, go and get Pete Waterman’s razor from his bedroom drawer.” Steven loves this recognition. He keeps his razor in his bedroom drawer too. That’s why I said it.

Yesterday I woke up at 6.45 and went for a pee. I could hear Steven chatting to himself in his bedroom. “Had Phats and Small at the Grangewood school disco. Hilary McDermott had her red dress on.” 45 minutes later, I’d showered and breakfasted and went to sort out Steven’s Sunday snacks. He was up and had climbed over the night shift worker who was still snoozing on the Z bed in the living room. Steven had found a channel that were playing the greatest hits of the 1970s. “Dad. Come and watch.” I needed no encouragement. My era. Right up my Street. The three of us were transfixed for the next three hours.

Same sort of programme as the 1999 show, but without the talking heads, Steven launched into a different realm of commentary. Somehow, he has worked out the musical timeline in his head and knows that all the songs were before his time and shifts the focus of his narrative on to me. During “Tie A Yellow Ribbon”, he tells us, “Big boy Mark Neary has gone to freezing cold Southall swimming pool with Bani Verma.” He’s right too. I must have told him that story from 1973 once and he never forgets stories like that.

We both enjoy educating the support workers. “I Feel Love” came on:

Francis: “Who is that?”

Steven: “Donna Summer. Man doing the switches is called Georgio.”

Me; “That synthesizer sound was revolutionary at the time. We thought we’d discovered the future of music.”

Francis: “I’ve heard of her. Very interesting.”

In a similar vein, but slightly more embarrassing, “Heart of Glass” was played:

Steven: “Big boy Mark Neary’s gone all soppy now.”

Francis: “Why have you gone all soppy?”

Me: “Let’s just say that back in 1979, I would have needed some private time whilst watching Debhie Harry.”

Serves me right for taking the Micky out of Steven and his reaction to Kylie doing Can’t Get You Out Of My Head.

It’s pretty obvious that I revel in Steven’s encyclopedic musical knowledge. I’m in awe of how he has constructed a perfectly accurate timeline in his head. During the 1999 programme, they had a commercial break just before they played the top three. I teased him:

Me: “Only 3 more songs, Steve. Who is it going to be?”

Steven: “Eiffel 65, Cliff Richard and Britney Spears.”

Don’t bother to Google it. He was spot on. It would have taken me ages to work that out, but it’s instantly accessible to Steven.

How do I put the mockers on? I got home yesterday about 5pm and tortured myself for the rest of the evening with the single thought:

“Who will share those moments with Steven when I’m no longer around.”

The answer is painfully obvious.

Thank You For The Music

We’ve just completed our Saturday compilation tape and Steven chose an Abba track as the big encore.

20 years ago this week, we went to the Leavers Assembly on Steven’s last day at middle school. Oh man, was it a several hankies occasion. Steven’s class put on quite a barnstorming finale to the rather formal proceedings that led up to it. Connor reprised his Blues Brothers routine from the Christmas play; Lorna stunned us again, just as she did at the Easter disco, with her unique take on Barbie Girl. Each student, metaphorically stepped up to the mike. And then Steven literally did….

His teacher put on one of the less familiar tracks from “Abba – The Album.” To this day, I’ve no idea what the plan was, but Steven just sat on the edge of the stage, smiling coyly to “I’m A Marionette.” Then, all of a sudden, he pressed the “skip” button on the CD player, grabbed the microphone off the headteacher and launched into a word perfect version of “Thank You For The Music.” Cue the tissues.

Twenty years on and that was the song that Steven chose to close today’s tape. As has happened on every other occasion he’s played that song since 2001, he rattled off a thorough commentary:

“Mark Neary cried. Julie Neary cried. Helen Evans (his teacher) cried. John Ayres (his headteacher) cried. Pat Davis (his favourite classroom assistant) cried. Billy Hughes (the caretaker) cried.”

Melancholic me has been stuck in a kaleidoscopic space ever since. A space of innocence. Not just 11 year old Steven’s innocence; my 42 year old’s innocence as well. At that same assembly, Pravir had swayed along to Wet Wet Wet’s signature tune and I’ve been thinking how it was such an innocent love that was all around us. The school never focused on the negatives; so neither did we.

The past fortnight has been awash with reviews. We’ve had the annual care plan review, carried out between me and a new social worker on Zoom. A few days later, she did a Zoom with Steven and the support workers to review the Community DoLS and assess, for the umpteenth time, whether Steven has the capacity to agree to his support plan. On Thursday, whilst Steven was at swimming, my phone rang and it was the community psychiatrist from the learning disability team, wanting to review Steven’s psychological state and medication. I’d completely forgotten. Pretending that I was super prepared, she led me, for half an hour, down that familiar negative cul-de-sac.

Three reviews in a few days and all producing that same old sinking feeling. Actually, it’s worse than that. I end up feeling ashamed and disloyal. I’m only following their line of enquiry, but I feel I let Steven down when all the focus is on things that he can’t do. With the psychiatrist, I had to dive deep into the memory bank to recall the last time we had to deal with “challenging behaviour”, but I could tell that she was glad that I could eventually remember a minor event that happened about 10 months ago. It gave her something to write about. I got into my annual capacity wrestling conversation with the social worker because I believe that Steven has a pretty good grasp on the issues around his support. I always give in because the decision (SN is lacking capacity) has already been made and I don’t think the social worker wants to go before panel and present my alternative view to the senior professionals.

None of it matters anyway. The key matter is that the support package doesn’t change. That’s the measurable outcome of a successful review as far as the Cowley boys go. The fact that Steven is presented as an incapable object is just collateral damage of the brutal process. If they heard Steven apeing Agnetha and singing; “But I have a talent. A wonderful thing,” that would most likely make it into the review report as an example of echolalia.

20 years ago we didn’t have annual reviews. Parents evening and the daily diaries were always positive moments. We hadn’t come under social services’s radar, so didn’t have a social worker and the DoLS scheme hadn’t been invented yet. We’d have dismissed having to defend Steven’s joy of thumbing through a photo album as silly talking.

And then we grew up.

Keeping An Eye Out

Some good news, and then the whinge.

Yesterday, I had the telephone follow up appointment to my May operation. The biopsies of my bladder and prostate were clear. Just like the March biopsies. After the discovery of cancer in my prostate in January and the resulting surgery to remove it, two biopsies in two months have shown no sign of any cancer. That feels great.

Then the consultant went through the options from this point on. Still on the table is the full removal of my bladder, bowel and prostate. I don’t really understand this, especially when the consultant said that we “missed the boat” on doing this back in January. I think we have different understandings of missing the boat because he reassures me that he’s not saying that I’m doomed to the cancer returning with fatal consequences. I’m reminded of my conversation with the Macmillan nurse, the first time that full removal was mentioned and how she explained that it was common practice to offer patients this option. Despite both their reassurances, I struggle to square such a drastic intervention after two clear biopsies.

The consultant knows my view about having everything out, so we quickly move on to the other options. He explains that it is “prudent to keep our eye out.” He’s talking about keeping his eye out, more than mine, and what this entails is going through the whole procedure again in September. Prudent it most definitely is, but the thought of another general anaesthetic, another catheter, another fortnight of blood filled, painful peeing makes my heart sink. And another MRI scan, just prior to the surgery. A darned nuisance, but the only way of really keeping our eye out. If all goes well, and that means three clear biopsies in six months, he will discharge me back to my local hospital for future care.

Then, the other pisser piece of news. I had already told him that I’m due to meet my hernia specialist next week and I want to be at my most assertive in pushing him to fix a date for the surgery. I’m told that I need to hold fire and postpone any hernia surgery until after the September operation. My heart sinks a bit more. It feels like I pressed a pause button back in July 2018 and it’s now going to be at least July 2022 before I can unpause. The consultant doesn’t really get this. He keeps mentioning that I’ve got my corset now as if it has allowed me to return to the life that I once knew. I’m too embarrassed to tell him that I’ve only worn the corset three times since I got it. I still can’t do many of the things that make me, me. I’m scared of how my diminished fitness levels are going to make it harder to recover from the repeated surgeries.

There’s no answer to any of this. It can’t be therapied away. The swings between hope & positivity and grinding disappointment are part of life now. I’ll probably feel quite different in an hour’s time. Yearning for a session in the gym, or a dive into the coldest lido is the new normal and must remain, a yearning.

Last week, I was desperate for a swim. But vanity kicks in too and I couldn’t bear to display my huge encumbrance in a public Pool. So I booked myself into an airport hotel for a night and prayed that their private pool wouldn’t be busy. It wasn’t. A couple were leaving just as I arrived and I had the pool and spa to myself for 45 minutes. It was heavenly. And then I went back to my room and had a long sob as I wrestled with the 20 straps on my corset so that I would look presentable for dinner.

I’m so glad that the biopsy was clear. I’m so glad that my consultant is keeping his eye out. I just need to keep my eye out for the good stuff of life. Because there’s still a lot of it.

Hinges & Curtains

Lovely support workers story: Volumes 168 & 169…..

I was in my flat the other morning, just before I left to go to Steven’s. I went to put something away in one of the kitchen cabinets, when there was the sound of something rather like a gunshot and an object flew out of the cupboard and caught me in the eye. The hinge on the cupboard door had snapped and the eye-catching missile was one of the screws. At that moment, the cab arrived, so I didn’t have the time to fix it and left it shut, propped up against the door of the neighbouring cabinet.

When I got to Steven’s, my eye must have still been watering, because the support worker asked me what on earth I had done to my eye. I told him what happened and he recalled my story of my chair accident from a few months back. My hernia has altered my centre of gravity! A few months ago, I stood on a chair to change a lightbulb and toppled forward, landing in the kitchen sink. Ever since, I’ve been apprehensive about standing on a chair unless I’ve got something to hold on to.

The next day, I had just shown my first client out when the doorbell rang. I thought she must have left something behind. It was Des, the support worker. He had stopped of at Wilkinsons on his way to Steven’s to buy me a new hinge and had come to fix it for me. How cool is that. He even changed the dead lightbulb whilst he was at it. I was bowled over by his kindness.

Yesterday, at Steven’s, I was struck by how much lighter the living room looked. I couldn’t work out why, then noticed, the window had a new set of net curtains hanging. I asked Steven:

“Steve. Have you got some new curtains?”

“Yes.”

“Where did they come from?”

“Des Disney got Steven Neary some new curtains on Friday. Curtains was a nice present.”

I was gobsmacked. Not just that Des had taken the time to get some new nets (he probably got them on his journey to Wilkinsons), but also that Steven appreciated the gesture of a “nice present”. He was clearly chuffed as he had a big smile on his face as we discussed them. I had never thought that Steven would see household items as a “nice present”; he never seems particularly interested. Let’s see if he has the same reaction when I get him a new casserole dish for Christmas.

The new support worker arrived yesterday for his first shadowing session. He got it spot on. There were lots of things to learn; jobs to be done, but his instinctive reaction was to get to know Steven. He was interested in him. He watched him. He chatted to him. None of that one page profile nonsense.

I realise how lucky we are to have Des and to have discovered Kingsley. And the rest of the team too. I observed a case in the Court of Protection on Thursday. I’ve written a piece for the Open Justice crew, so I won’t go into the story here. Except to say that the woman at the heart of the case was 82 and lives in a care home in Hillingdon. One of the directions from an earlier hearing was to personalise her room at the care home. 18 months on, that small task still hadn’t been done. She doesn’t have a Des Disney. nobody is interested.

As Neil Crowther would say, it’s all in the framing. My skin crawls when I hear the phrase: ” a piece of work.” The Hillingdon barrister used it every time the judge issued a direction. Personalising the room = a piece of work. Even though Des was at work, I don’t think he would have described hanging the curtains as a piece of work. Normal human gestures get turned on their head and that weird phrase is meant to infer an importance beyond the norm. The irony is that it does the opposite: it reduces everything it touches.

I can’t say how much the stories of the hinge and the net curtains reassure me. I always worry about Steven’s future when I’m no longer around. Those fears have been even more prevalent since I’ve been dealing with cancer. Those fears will never go entirely, but when you’ve got someone who is prepared to go shopping in his own time for something that will make Steven’s life better, you can rest a little easier.

Early Musical Lines Of The Cowley Boys

Steven and I have just finished out Saturday afternoon music compilation tape. Recently we’ve been working through very specific categories. The last three weeks we’ve covered: “Songs with girl’s names”, “Songs with animals” and “Songs about places”. When I asked Steven on Thursday what he wanted this week’s topic to be he replied: “Songs when Mark Neary was a little boy.”

I was toying with the idea of putting this post on Steven’s Massive Radio Station blog, but thought that here would be a better place as it’s about me. I do get so hacked off on social media when parents get slaughtered for “erasing/stealing” their disabled sons and daughter’s voices, so decided to turn that on its head. This is my story (or at least the 1960s part of my story) told in Steven’s words. He is fascinated by stories of me and the family before he arrived in the world. I like how he builds a story to suit himself so that the tale ends up half factual and half a result of Steven’s imagination running riot.

I Chose 8 songs for the tape that Steven is extremely familiar with, and true to form, he carried out a narration all the way through the taping.

Without further ado…..

1. “Uncle Bob and John went to a pub in Acton for some bitter beer and some smokey bacon crisps.”

(You may remember my Uncle Bob from Lines. Uncle Bob of Sale of the Century and the blue camper van fame. Uncle Bob was very distantly related to John Entwhistle from The Who.)

“Granddad John said that Keith was a massive good drummer.”

2. “Lulu Orange didn’t go to little boy Mark Neary’s school. Lulu Orange went to another school.”

(Old timers may remember that Steven heard the rumour of Lulu and Jason Orange getting down and dirty during the recording of Relight My Fire, so since then has always called her Mrs Orange)

3. “Little boy Mark Neary was doing his Mick Jagger dancing at the school disco with Bani Verma and Natalia Pollard.”

4. “Little boy Mark Neary went to Windsor Castle with Granddad John and Nanny Beryl. Little girl Auntie Jayne wasn’t here yet. Little boy Mark Neary had a Zoom lolly near the swans.”

5. “Little boy Mark Neary was playing football in the park. Little goalkeeper Phillip didn’t like The Easybeats.”

6. “Little boy Mark Neary & Granddad John went swimming at freezing cold Southall swimming pool. Little boy Mark Neary had a Penguin and an ice cream.”

(You can see how Steven’s interest usually veers towards food)

7. “Little boy Mark Neary had his silly head on. He said that Dusty Springfield was Auntie Jean. Auntie Jean doesn’t know Neil Tennant and Chris Lowe.”

(I’m slightly aggrieved that he’s dismissed my 6 year old imagination as me having my silly head on. Dusty does look like Auntie Jean and he’s a fine one to talk as he dines out on his lookalikes stories.)

8. “Little boy Mark Neary pinched Auntie Carol’s Gary Puckett record. Go to your bedroom, Mark Neary. No jam sandwiches for you tonight. Auntie Jayne (she was in the world by now) can eat Mark Neary’s jam sandwich.”