1979. What a year.

I’ve been spending my week off revisiting my top 500 singles of all time. Like you do. I decided to work out what year was my favourite, song wise. My memories of 1979 are: becoming a mod, getting my ear pierced, playing the construction worker from The Village People in the DHSS Christmas show and nearly falling out of the rollercoaster at Great Yarmouth. Steven was a tiny seed and not in the world yet.

Anyway, here’s 1979. Starting at number 12, working down to number 1



A Urachus Story

Sometimes in your life everything changes. Whilst nothing changes. Forgive me. I want to get this down.

It’s the 11th July 2018. A hotel in Torquay. The world cup semi final. England Vs Croatia. I’m in agony. Huge stomach cramps. Nausea. I do an enormous shit. I’ve never seen anything that size before. The next day it still won’t flush away. I’ve had a pizza delivered via room service. I try to cut the turd up with the complimentary plastic knife and fork. I stuff the huge brown lump into a carrier bag and dump it in a bin on the promenade. I walk off fertively, not looking back in case undercover police think I’m depositing the proceeds of a drug deal. I’ve not eaten but I head for the hotel gym. Got to keep up the intense training for my over 60s bodybuilding debut next year. I eventually sleep. I wake up in time to make it in time to see the Paignton Players production of A Murder Is Announced.

Two weeks later. The cramps have stopped me sleeping. I’ve turned jaundice. My pee is brown. My stools are grey. I’m living on a diet of Calippos and golden syrup porridge. I phone the GP. A locum sees me. She looks and sounds concerned. “We have to consider the possibility you have cancer of the liver”. I leave and walk into a wall. I find it hard to tell people. Steven and I have a Proclaimers session. I forget the words to Over and Done With.

August. I’ve given up on the idea of sleeping. I try to watch the European Athletics Championship. It’s my favourite sporting event. I have to keep moving to cope with the pain. Joggers jog along the towpath. Barges meander along the canal. A fox attacks a swan. I wish I was as uninhibited as the swan in screaming. I’m yellow. I can’t pass it off any longer as a Torbados suntan.

September. The pain has stopped. My skin colour returns to slightly high blood pressure pink. Pee and poo back to normal. I feel fine. I return to work. A mate comes with me to the gym. I blast him. I’ve lost quite a bit of weight but my gym buddies compliment me on my vascularity. Heading in the right direction for next May. What the fuck has this been all about?

A Sunday morning CT scan. The radiographer is 45 minutes late. 30 of us, already gowned up are causing a bottleneck outside X-ray. Another 50 odd people, fully clothed play candy crush in the waiting room. The scan takes 10 minutes. I head to Steven’s to watch Muriel’s Wedding. I feel as perky as an Aussie bride. The prospect of liver cancer is evaporating.

It’s the day of the Rightful Lives exhibition launch. I wake up at 6.30 and tweet the life out of the exhibition link. I have a purpose. I buy Steven his pepperoni sticks for tomorrow. Three hours later, I’m sitting in the consultant’s room. The scan was good except. There’s a small tumour in my bladder. It’s got to come out quickly. He sticks his finger up my arse for good measure. I Google. Treatment for bladder cancer generally more successful than liver cancer. Something switches off. I tend to my affairs.

From the beginning I’ve had to chase up everything: the hospital referral, the scan date, the scan results. I get an operation date two days after seeing the consultant. A tiny waiting room. Lots of frightened men. Comforting wives, or in my case, my sister. I’m the last operation of the day. The supervisor of the recovery room shouts a lot. “I want trolley six out of here NOW. Move it”. On the ward, I’m nervous about looking down. I don’t want to see the catheter. I feel waves of disgust.

Next day and I’ve slept three hours. The pain is violent. The assassin arrives. They think there’s a blockage and she’s going to insert a bigger catheter. It takes 65 minutes. I hit the bed repeatedly. A kind nurse strokes my forehead. The assassin snaps at the nurse and reminds her that her job is to assist the doctor. I shake. I can’t catch my breath. I suspect I’m being traumatised. The assassin leaves. She hasn’t said a word to me during the whole 65 minute assault. Dr Ng arrives. Over time, he becomes my hero. If I’m prepared to take the risk, he’ll remove the new catheter. The relief is instant.

I’ve been home two days. I wake up at 00.30am. Someone has put my chest in a vice. My sheets are saturated in sweat. I’m scared to phone an ambulance. I might end up back under the assassin’s care. I do phone. The paramedics wire me up. I’m having a heart attack. They won’t let me walk down the stairs to the ambulance. The crash team are waiting for me in the car park. I can count 8 of them. My sister and Wayne have beat the ambulance. The surgeon talks to me all the way through the surgery. I like him. I might be dying but I feel safe.

It’s a different hospital to the bladder surgery. It’s like chalk and cheese. Everyone has time. I weep at people’s kindness. My razor has snapped in two in my toiletries bag. One of the nurses finds me a new one. I discuss musicals with the night sister. Everyone is happy with my recovery. I go home on 10th October. A bag full of medication. I throw my packet of cigarettes away whilst we wait for a taxi.

In four days, I had a tumour removed and had a heart attack.

Two weeks after the heart attack I go back to see the bladder surgeon. He hasn’t got my message about the heart attack. He is visibly shocked. He is grave. He apologizes for the catheter business. During the operation they discovered I still had a Urachus. 1 in a million of the population still have a Urachus after their birth. I’m one of them. In my Urachus was a tumour the size of a small melon. It was pressing on my bladder. The ward staff mistook the tumour for my bladder. I never needed to have the catheter changed. The surgeon is hopeful. It’s eminently operable. But not yet. I can’t come off the heart medication three weeks after starting. A good chance my heart wouldn’t survive another major operation so soon. Would I like to speak to a counsellor?

I join the cardiac rehab group. It’s useful. I like exercising. I look at my fellow 11 heart attack survivors. We don’t talk much. Just small talk about allotments and fried breakfasts. I’m on the trampette. I wonder who we are now. Who we were before our surgery. Talking about feelings isn’t part of the recovery programme. Someone mentions Brexit and it all gets very tense. Not very good for the blood pressure. I do some bicep curls with the 3kg dumbbells and reflect that I was using 15kg just three months ago. Loss seems to be occupying most of my thoughts.

I’ve got to wait until at least January and keep everything crossed that it doesn’t spread. I spend Christmas at Steven’s. I stay an extra day. I love him more than my repaired heart can bear. We have a John Travolta Christmas Day. Grease followed by Saturday Night Fever. I notice a tear escaping as Rizzo sings There Are Worst Things I Could Do. Excess chocolate keeps the tears at bay and we sing and dance to Stevie Wonder. It’s perfect. It may be my last Christmas. Wham!

6th January. The day before the operation. My last visit to Steven for two weeks. I want to hug but we don’t hug. We enact the Waldorf Salad episode of Fawlty Towers instead. That’s as good as a cuddle. I go home and pack a bag.

There’s no time to get nervous. I’m scheduled first at 9.30. I wake up mid afternoon in intensive care. Lots of wires and tubes. A massive urine bag dangling over the side of the bed. A self administering morphine drip. A nurse makes me scrambled egg. They tell me the Urachus, the tumour and a quarter of my bladder have been removed. I’m alive.

The next day my book is published. My sister picks up a copy from home. The ward staff are interested. It gives us something to talk about besides blood thinning tablets. The ward round. I’m not filling up my bag enough. They want to fit a bigger catheter. I freeze and remain frozen for 90 minutes. I can’t say a word. Dr Ng appears. He does the whole change in 90 seconds. I grab his arm and tell him he’s exorcised my demon ghost. He’s not sure what to say. I celebrate by walking for the first time in 36 hours. The cardiac rehab nurse pops in to see me. Am terribly touched by everyone’s humanity. Six people on the ward die. The screens come round and it’s all hands on deck. Then the screens are pulled back. A nurse is changing the sheets. Another nurse is packing belongings into a bag. I witness this dance six times but I can’t get used to it.

I’m moved to the ward I’d been on back in October. It’s scary. Lots of alarms going off but nobody answering them. Where is everyone? A night nurse shouts at me for shitting my pyjamas. On a better day I’d smash his head into the wall. But I’m in pain from the catheter. I feel ashamed. I’m disgusted by my condition. The man in the opposite bed designs jigsaws for a living. My cousin visits. So do the support workers. My sister brings cheese sandwiches because the food is making me heave. I barely sleep for six nights. I want to escape like Steven did from the ATU but there’s no Take That singing The Flood to kick me up the arse. I’m discharged six days after the surgery.

Jayne turns up with a roast chicken dinner. I phone Steven and he tells me his best Richard Whiteley joke. I’m home. Four days later I contrive a trip to A&E because I can’t bear the pain of the catheter any longer. After 10 days, I struggle to pee straight. It goes everywhere: the wall, the floor, the cistern, my tracksuit. Everywhere but the specimen bottle. After 5 hours, 6 bottles of water and 4 mugs of coffee, I can go home. I can wear pants again. I can turn over in bed again. I sleep for 11 hours. The following week I have the staples removed. There are 32 of them. I can bend down to put my socks on. For three weeks, putting on socks had become a humiliating game of hoopla. The next day I reunited with Steven after two and a half weeks. He does enjoy a scar.

February and March. Back to Dr Ng (how do you pronounce that name?) Embarrassingly I can’t stop calling him “my hero”. The biopsies show the cancer hasn’t spread. What was there, is all out. Just twice yearly scans to be on the safe side. Discharged from the heart hospital. Completed a second batch of 12 sessions at the cardiac rehab group. And I turned 60. I’ve swapped a urachus for a freedom pass. Exchanged a tumour for free prescriptions. To mark the occasion I’ve treated myself to an antique writing bureau.

I’ve taken two weeks off work. A huge space has suddenly appeared and I need to stare into it. Even get into it. Brushes with death allegedly are meant to deliver a wisdom and calm that didn’t exist before. I know nothing. I feel a huge relief but I’m lost. I’m experiencing polarities more accutely than ever. I want to talk but I don’t want to talk. I want adventure but I want to lock myself away. You know when you’re driving to a funeral. Someone important has left your life but everyone walking down the road are carrying on as normal. Shopping. Arguing. Holding hands. Every day feels like that at the moment.

If you’ve got this far, thank you. I’m glad I can write about it. I’ve been writing this in a pub beer garden for the last three hours. I’m frozen. Time to go home.


The Community DoLS Witness Statement.

After a week of angst, I’ve finally done my witness statement in respect of Steven’s Community DoLS. I’ve probably exceeded what is expected from a non contested order but I’m satisfied that I’ve been congruent in what I’ve written. Here it is:

I am the father and court appointed deputy of Steven Neary. I am happy and willing to continue to be Steven’s representative.

I am in possession of Steven’s most recent care plan (September 2018) and am more than satisfied with its contents and the care that Steven receives from his excellent team of support staff. Steven lives a life that he enjoys, is content with and provides him with meaning. This would not be possible if any part of his care provision was lacking. I have no concerns around his care arrangements.

I do not believe an oral hearing is required or is something I would want to pursue. This is because ultimately I believe that Steven’s care arrangements are in his best interests. I also believe that given current legislation, London Borough of Hillingdon could have come to no other conclusion that Steven is currently being deprived of his liberty in his own home and I have no wish to contest that decision. However, I do want to put on record two issues that do not sit comfortably with me:

  1. I disagree that Steven lacks the capacity to consent to his care arrangements. I believe the way in which capacity assessments are constructed and the little time that are given to them, do not give Steven the opportunity to demonstrate his capacity. Being with Steven daily and having discussed the matter with all his support staff and people who know him well, I believe that Steven’s understanding of his care arrangements is unique, slightly quirky but straightforward. However, he often struggles to verbally articulate his understanding, especially given the template the questioning follows. I would also suggest that Steven’s actions on a day to day basis demonstrate a good understanding on his part but little weight is given to this during an assessment, turning the exercise into solely a cognitive, verbal test.
  2. My second difficulty, I suppose goes to the very essence of the Cheshire West Supreme Court judgment. Nobody observing Steven going about his normal day to day life would consider that he is being deprived of his liberty in the literal sense of those words. In fact, in my opinion, the opposite is the truth – Steven’s care arrangements give him his liberty. In his own home, Steven is very much king of his own castle, making choices with a self assurance and a peace of mind that has taken many years to reach such a point. Without the 24/7 support in his home and the 2:1 support when he goes out, Steven would be forced to live in a much more institutional setting with none of the freedoms, choices and opportunities that he currently enjoys and that make his life so fulfilling. Nine years ago, Steven was deprived of his liberty for a year in an assessment and treatment unit and his life today bears no comparison to those dark days.

In conclusion, despite the reservations I express in the previous two paragraphs, I agree that the order from London Borough of Hillingdon is in Steven’s best interests and is the least restrictive option for his care.

Copping Out At The CoP

I received the paperwork from the Court of Protection this morning relating to Steven’s Community DoLS.

I can’t begin to describe what a heart sink moment it was. This ludicrous process that has taken so much time and energy over the past three years has now reached a point that it is ready to be put before a judge. I’m not going to go into the whole laborious tale again, suffice to say that as a result of the Cheshire West DoLS appeal, Lady Hale came up with an acid test for deciding whether people are being deprived of their liberty in their own home. It boils down to two things: Is the person under constant supervision and Are they free to leave their home? If the answer to the first question is “yes” and to the second question “no”, then the person is seen as being deprived of their liberty in their own home.

I’ve written several posts on this blog about the difficulties I’ve had with this process but what today brings is a kind of High Noon moment. I know this will sound overly dramatic but it’s my last chance saloon for being congruent about this process.

If you’ve never seen a CoP24 form before, it’s a fairly straightforward witness statement document. I’ve filled out lots of witness statements before so I don’t have a problem with the form of the form. For me, the difficulty is psychological rather than practical. Will I speak my truth in the witness statement?

There’s a helpful guidance sheet but consider these final two questions that are bothering me so much:

1. Whether you believe an oral hearing is/is not required.

2. Why the restrictions on Steven Neary’s liberty are in his best interest with reasons.

Part of me would love an oral hearing with a judge. An opportunity to thrash out the nonsense that this legislation has become. An opportunity to put some human perspective on a process that is only seen these days in the context of an administrative burden for the professionals. The human beings for whom the safeguards were devised have long since been lost. Ironically, this was the very thing I was invited to speak about on yesterday’s cancelled You and Yours programme. The other part of me however wants to scream, what would be the sodding point? Why invest any energy into something where nobody is really bothered about legal safeguards for people like Steven?

My response to Point 2 is even more challenging. I don’t totally believe that Steven lacks the capacity to agree to his care arrangements. I posted the absolute pig’s ear of the mental capacity assessment a few months back. If the assessor had bothered to get to know Steven and had given him more time, I suspect the outcome of the assessment could have been very different. But who is interested in giving Steven the opportunity to demonstrate his own unique capacious way of understanding his care arrangements. So, I struggle with the third word of Point 2. I don’t believe Steven’s care arrangements restrict him in the slightest. On the contrary, his care arrangements give him in his liberty. But not when looked through the narrow, distorted lens of a Community DoLS kaleidoscope. Is there any point in challenging that in a witness statement? It exposes the king’s new clothes of the whole scheme. I can imagine the terrible tension created at a hearing by describing something as normal as Steven’s life.

Added to the mix is a dream I had on Saturday night. It’s far too involved to go into here but I love puns in dreams and there was a great pun about my “causeway” disappearing off my landscape. I don’t have a cause anymore. I don’t actually want a cause at the moment. I’m thinking of coming off social media because I’m more and more disillusioned by the modern way of pursuing a cause. If I’m going to write a congruent witness statement or suggest an oral hearing, it’s got to be about something other than pursuing a cause.

That brings me right back to Steven. And myself. As I’ve said many times, the Community DoLS has no impact on Steven’s life whatsoever. He is completely irrelevant in the process. Whatever I do with the court application, his life goes on in the way that he wants and likes. For me, I’m accutely aware of the large empty space that has opened up since my operations. I want to fill that space with something worthwhile, something enjoyable, something meaningful.

And that’s one thing one can safely say about the Community DoLS process – it is none of those three adjectives.

Actually, Love

I felt really sad the other day. I suppose it was the culmination of feelings that I’ve had after three years of being involved in the 7 Days of Action campaign and the Rightful Lives exhibition. Victoria Derbyshire had a feature on ATUs. It involved a long interview with the parents of a man called Mark who has been in several ATUs for the past 11 years. Also interviewed were the remarkable Alexis Quinn who told her story of detention in an ATU and her eventual escape from the unit; A legal bod from Mencap and Margaret Flynn, who conducted the Winterbourne View investigation. To me, although I would have preferred to hear more from Alexis and less from the Mencap woman, it felt like a very powerful, timely and balanced feature. Victoria interviewed me back in 2010 and has covered the scandal of ATUs repeatedly since, so I think it’s fair to call her an ally. What made me feel sad was the criticism Victoria received on social media for the time she allocated to the parents at, what the complainer saw, the expense of people with learning disabilities/difficulties who have been detained. The criticism was that it was the parent’s voice and not the detained person’s voice. Or even an advocate with a learning disability speaking. This seemed to me to be unfair and unduly combative. The parents focus was on Mark the whole time. Mark clearly wasn’t able to speak for himself because he is locked up. We know what incredible lengths the ATUs will go to, to prevent the voices of their patients being heard. As we heard, Alexis had to escape all the way to Nigeria before she was safe to tell her story. So, if Mark couldn’t tell his story, who else could?

The next day, a similar complaint happened on social media. Ian Birrell the journalist who has written several articles for months about the ATU scandal and has done more than most to investigate and bring the scandal to the public’s attention, won two awards – one a journalism award and another from Amnesty. These announcements were met with criticism that he has concentrated on the voices of families in his articles and ignored the disabled voices. Once again this struck me as unfair as it was setting up an unnecessary “us and them” battle line.

Since reading both these objections that were also thrown repeatedly at Rightful Lives and 7 Days, I haven’t stopped reflecting on the role of the family voice when one of their family is detained in an ATU. If a mother speaks about her detained daughter, is she denying someone else a voice? When I campaigned to get Steven home, was I shutting him up or anybody else? When Mark’s parents are allocated a 10 minute interview on the Victoria Derbyshire show are they freezing out someone who doesn’t have a family to speak for them? I think that by asking myself these questions, I’ve allowed myself to get caught up in the inappropriate battle lines of us and them.

I’ve got one simple answer that will undoubtedly piss off the people who have those criticisms I’ve mentioned above. It’s love, actually. The one thing that Mark’s parents brought to the interviewing table that an advocate, the Mencap bod or Margaret Flynn couldn’t possibly bring was love. They can’t possibly, so that’s not a judgment about something lacking on their part. I have a great affection for some of the dudes like Jack and George who contributed to Rightful Lives but I don’t love them in the same way that I love Steven. A family member talking about their incarcerated relative is a compelling narrative because 99 times out of 100 it comes from a place of a lifetime’s love. Margaret Flynn obviously cares deeply about the people she’s encountered and is an expert on her subject but it’s a different narrative to that of a parent because it’s not about a family love. That love brings an element and a tone to the story that can’t come from anywhere else.

I also believe that a parent talking from a place of love is more likely to make the viewer resonate regardless of whether they know anybody with a learning disability/difficulty because lots of the audience will have experienced the love one human being can have for another. It goes beyond a professional narration. It’s very different to an advocate’s story. I’m not saying it’s more worthy; just more recognisable. I was invited on to You and Yours next Monday to talk about the Staffordshire DoLS case. It was made very clear why I was wanted – to tell the human story of Steven’s two experiences of DoLS and told by someone who loves him very much and because of that love, knows precisely how to pitch the story. I’m not bigging myself up but I know that by the end of my piece the listener would have had a clear understanding that there are human beings at the heart of every DoLS case. Unfortunately, they’ve made an editorial decision to just have the ombudsman and someone from Staffordshire council on. This is a shame because it will inevitably turn the discussion into what an administrative burden the DoLS scheme is and the people for whom the law is meant to be safeguarding will be lost.

I have no idea how someone currently serving 8 years in St Andrews (for example) will ever get the chance to be interviewed by Ian Birrell or Victoria Derbyshire. Not until they’re discharged at least. There was another interesting social media discussion this week on gagging orders. What most families learn is that even if they’re not subject to a court imposed gag, the hospital/LA will threaten them with a gag and terrible consequences for their sons/daughters if they speak out. Whether the person has a family or not, the chances of them getting direct access to the media to tell their story whilst they are in an ATU are nigh on impossible. And that’s not the fault of Ian or Victoria. And it’s not the case of a parent taking away someone else’s voice. To be frank, if the person you love is being tortured mentally and physically in an ATU for years on end, you’ll jump on any opportunity you get to try and end their suffering, without thinking whether you’re taking anyone else’s space. It’s not selfish. It’s called love.

Nobody should have to justify their love. Nobody should have to take political considerations into account. Nobody should feel guilty for using their voice.

Not when someone’s liberty and the rest of their life is at stake.


Cleo Trussell On The Campaign Trail

“Whoop whoop. Oh wow. This is so frigging cool.

Thank you so much good people of Shanklin for inviting me to launch my latest campaign here today. I’m a lady who launches. It’s so appropriate that I’m launching in Shanklin as this small port has a proud history in launching the Portsmouth to the Isle of Wight hovercraft and I now feel part of that incredible history. Awesome. Thank you Shanklin.

My name is Cleo. Cleo Trussell. Campaigner, authoress and zumba therapist. You may be familiar with my elder twin sister, Deidre? From little acorns, big things grow and Deidre has become the giant redwood of social care innovations. My journey to this point has been more meandering and I’ve often found myself down the odd cul de sac before I’ve rediscovered my campaigning sat nav and found more fruitful roads less travelled. Deidre and I share more than similar chromosomes and a love of the potted winkle though. Our childhood was blessed and we are both committed to giving something back. We are givers. Giving back.  We strive and stride in the service of those less fortunate than the Sisters Trussell. And we’ve both made it our lives work to give something back to those unfortunate souls that our cruel world sees as less than human. I’m doing this for all of you. All of you who have experienced the harsh tongue of Mother Earth, genetic or otherwise.

The Cleo Trussell Giving Foundation is not about me. It is everyone. It is you. It is those people who don’t have a giving voice. I’m giving them their giving voice. We are one. We speak as one. We give as one. We even eat custard creams as one. We dance the Macarrena as one. I want all my givers in Shanklin to reach out across the Solent and stroke the hand of someone in Hampshire that, on another day, you might be inclined to ignore. The woman shopping in Poundland. Take her hand and stroke it. The chap in his wheelchair at the community access hub. Grab his hand and give him giving. Let’s start the greatest Mexican wave the South of England has ever witnessed.

My appearance here today has a dual functionality. My purpose is dual. I am twofold and not because I was too lazy to press my frock.  Firstly, I’m here to launch The Cleo Trussell Giving Foundation’s latest campaign. We’re trying to bring on board, into the public conciousness a highly marginalised section of our society whose voice is seldom heard. I’m talking of those people with disabilities/difficulties/differences/mules slippers who identify as Una Stubbs. There are 1000s of them that I suspect the majority of you never knew existed. So today marks the start of our “I’m a Una” campaign which will be all over social media (#ImAUna) like a rash before the bongs start on tonight’s News At Ten. We aim to give a voice to our sons and daughters who are self identified Unas and to that end are launching our combined “I’m a Una” badges and bandana set at £14.99 plus postage and packing. We are also periously close to securing funding for the “I’m a Una” exhibition at Canary Wharf and will be calling for the nation’s artwork that will support this orgy of humble creative giving. Shanklin – get rag rolling.

Finally, I’d like to welcome the Cleo Trussell Giving Foundation’s latest special ambassador, the Mayor of Shanklin, Reginald Stubbs (no relation). Ambassador Stubbs will be holding a tea dance on Thursday in the pavillion and we sincerely hope that people with disabilities/difficulties/differences/mule slippers who identify as Una Stubbs will feel able to contribute some lovely homemade cakes for the occasion. Regrettably, no wannabe Unas are on the campaign steering group for the tea dance roll out but if they have the capacity to stick a few currants in a bun, their contribution is more than welcome. Every little helps. My foundation is providing the platform – it’s open to all to step onto the platform. We are you. You are we.

Thank you Shanklin. Give give give.”

29 Years From Now

It’s Steven’s 29th birthday tomorrow. Where have all those years gone? Surprisingly for me, I’ve been giving less thought to birthdays past and have been given more time to reflecting on birthdays future.

As is usual, for the past couple of weeks Steven’s attention has turned to his birthday with primary focus on seeking reassurance that he’ll receive the sort of presents he most likes. The new pyjamas will elicit a cursory interest because his hopes are focused in four areas that have turned into the following mantra that we’ve been hearing at least 50 times a day over the last fortnight:

“Steven Neary will have some new videos for his birthday. Steven Neary will have some new DVDs for his birthday. Steven Neary will have some new CDs for his birthday. Steven Neary will have some new books for his birthday”.

This is what he likes. This is what is important to him. This is how he constructs his world. But for how much longer?

I went to visit a friend last week. She has a son who is a year younger than Steven. He doesn’t have a learning disability. His living room is completely different to Steven’s. Apart from a small unit that houses a collection of Play Station games, there is no storage in his living room. No bookshelves because he reads all his books on Kindle. No CD cabinet because he streams all his music from Spotify. Steven has 3 shelf units crammed with his video/dvd collection: my friend’s son has Netflix and a USB.

I’m an old git, so it’s obvious where my instincts are going to lie. And because of that I’ve clearly influenced Steven in that direction. Steven likes holding stuff. He enjoys the physical sensation of having a DVD box in his hands. I’ve got him the new Take That CD for tomorrow. Steven will put the CD on the player tomorrow but before he presses “play” he will stroke the cd case several times and spend about 10 minutes looking at all the pictures on the sleeve. I’m not sure exactly what’s going on for him but there’s obviously a sensory experience taking place.

How much can Steven learn that will enable him to inhabit the world that my friend’s son lives in? VHS tapes are becoming harder to get hold of and I’ve no idea where my nearest record shop is. Being unable to read or write is an obvious barrier to the modern way of accessing your home entertainment. Steven enjoys a YouTube session. But he needs someone to kick-start the session. We have set up loads on playlists but if he says he wants a Gladiators session, he needs me or a support worker to type in “Gladiators” to get him going. Once he’s out of the starting blocks, he can navigate himself around the various Gladiators pop ups but if he decides he wants to change course to some Coronation Street clips, it’ll be “Francis – come in the bedroom and find Curly Watts on the computer”. He can’t do that gear change for himself.

It’s the same with music. A CD has a picture on the case that Steven will recognise. I swear that on his incredible internal hard drive that after listening to a CD once or twice he stores that Ring of Fire is track 9 on his Johnny Cash’s Greatest Hits CD and in future can press the cd remote control until it reaches the ninth track. But without the physical prompts he’s all at sea. A few years back, I tried to ween him off his Sony Walkman and brought him an IPod. It never caught on. Like YouTube he needed assistance to find the tracks on ITunes to download and for someone who likes the independence of constructing his own entertainment experience, my input in having to locate the track was an interference too far. But without someone’s input, at least initially, this type of streaming is completely inaccessible to Steven. And he has to sacrifice his sensory experience.

The last example of how difficult it is to move with the times is around pictures. Steven tolerates photos on a phone but he’s never happier than when he’s sitting on the sofa next to someone with a physical photo album on his lap and giving the most intricate commentary of everything in the photo. I can’t accurately describe the difference but a photo on a mobile is clearly an unsatisfactory sensory experience compared to holding the photo album.

I don’t want Steven to be left behind. He will need lots of external input to bring him into 2019 as far as his popular culture goes. But I worry that much of what is now taken for granted is totally out of his reach because he doesn’t have the capacity to access it. Whilst at the same time, he’ll lose an important sensory need he has that I’m not sure can be replicated by anything else.

And there will come a day pretty soon where you won’t be able to buy a VHS player on Amazon for love or money.

Is that the day Boney M dies for Steven?