So what if I can’t pee straight anymore,

I’ve got the amusement of hitting the window, the back wall, the floor.

What the heck if a walk leaves me gasping for breath,

There’s lots of adventures to be had yet.

And it’s true, I’m carrying my drainage in a bag,

But I’m gonna buy me one helluva bag.

Fentanyl and catheters can take a dive,

Because right now I’m feeling alive.

I’m not home yet, but I’m already planning the spread.

I’m not out yet, but the demons are out of my head.

I’ve got a spring, a jaunty little skip in my mules.

I feel alive, and as of today, that’ll do.

What Makes A Man

Here is a good example of how Steven likes to build a solid back story to a song lyric or a line from a film. Give him a lyric that fires his imagination and he runs with it.

It’s also a good example of how you have to be mentally bolt upright from first thing in the morning in order to play along with the fantasy. This conversation happened at 7 o’clock this morning. I was just waking from a dream that had echoes of the music video for Hello, with me playing the Lionel Ritchie part, but Kim Wilde playing the part of the blind student. Anyway, the door was flung open and Steven burst in, grinning and proclaiming “Westlife.”

Just a tiny bit of background information before I launch into Steven’s story. On the 2000 edition of Christmas Top of The Pops, hosted by Sara Cox, Richard Blackwood and Jamie Theakston, Westlife performed their number two hit, “What Makes A Man.” The hosts were a bit cruel, mocking Westlife for being pipped to the Christmas number one by Bob the builder.

“Dad. Westlife.”

“Westlife mate?”

“Westlife sang What Makes A Man on Christmas Top of the Pops.”

“Oh yes. Westlife was singing What Makes A Man on Christmas Top of the Pops.”

“Shane was singing, I swear I won’t cry.”

“That’s right. Shane was singing I swear I won’t cry.”

“Shane was crying because Kian Egan shouted at Shane with his loud voice.”

“Oh dear. Why did Kian Egan shout at Shane with his loud voice?”

“Kian Egan shouted because Shane was swearing. Mark gave Shane a tissue to wipe away his tears.”

“What was Shane swearing?”

“Shane was swearing; that fucking Richard Blackwood has eaten all the Christmas Cheeselets.”

“That was disgusting of Shane to swear and disgusting of Richard Blackwood to eat all the Christmas Cheeselets.”

Long pause.

“Steven Neary’s going back to bed.”

The Ban

A very peculiar thing has happened. I received a notification from Twitter that they have handed me a 14 day ban. Even more peculiar is that they wouldn’t say what my crime was or even if I could say anything in my defense.

I wish I could just shrug my shoulders and wait for the fortnight to pass, but I couldn’t let it go. Fortunately, I can access the Rightful Lives account and went and had a look for clues. I think I’ve pieced together what has happened and it makes me sick to my stomach. I will never go on Twitter again.

A couple of weeks ago, I had been following the live tweeting of the Tribunal that has been brought by Mermaids to challenge the charitable status of the LGB Alliance. I found it compelling. Like most live tweeted hearings, I experienced moments of genuine shock and there were a couple of brilliant laugh out loud moments too.

What struck me so forcibly was how closely the performance of the Mermaids witnesses resembled the witnesses from Hillingdon that gave evidence in our case in 2011. Arrogant, evasive, deceitful were just three adjectives that sprang to mind. In contrast, there were a couple of profoundly moving moments when the two founders of LGBA gave evidence and it reminded of the moment in 2011 when Asweene asked me why I got so upset whilst the social work manager gave his testimony. It’s these moments of spontaneous, absolute truth, that can’t be rehearsed that reveals the genuine from the performance.

So, I decided to do a long Twitter thread comparing the Tribunal with my experience in the Court of Protection. I knew that even though I tried to avoid making obvious judgements about the current case, I would inevitably reveal where my sympathies lie and that would seriously piss some people off.

The thread only got seven likes. Usually when I write about our court case I get hundreds of likes and many retweets. Within about 10 replies, I’d been called a transphobe, a Nazi, a bigot, a fascist. I was posting hate speech. One person, who I had never encountered before, was particularly hostile, but after a dozen or so tweets, calling me all the names under the sun she blocked me. The pile on lasted about 48 hours and then they moved on to someone else.

Looking back on the thread since the ban, 3 of my tweets are missing, replaced with the “this tweet violates Twitter policy….” I can’t remember exactly what I wrote. I was scrupulously polite to begin with, although I did turn a bit snarky with some of the more ferocious people towards the end. I went and looked at the timeline of the most hostile person, and after she blocked me, she did a tweet (with a screenshot of one of my posts), calling on her followers to report me for misgendering her. I’m sure I didn’t. I noticed in her profile today she identifies as “Trans, non binary, bi-sexual”, but I’m pretty sure I referred to her by name during our conversation. I am prepared to acknowledge though, that even referring to her/she in this post, I may be making a mistake. From the replies to her screenshotted tweet, she clearly galvanised many of her followers into action and that was that.

I’m 63, but this sort of thing is straight out of the school playground. Infants school. It’s no way for grown ups to behave. I felt really grubby and wobbly for a while, but also pleased that I followed my instinct and wrote about something that I found interesting. In hindsight I should have written about it in my blog and not a Twitter thread.

It’s a blessing in disguise. Twitter has long ceased to be a place for humour. Or respectful disagreement. I’ve got my hernia surgery on 14th October, so being Twitter free will probably be jolly good for my blood pressure between now and then.

It’s A Knockout

How time flies.

It’s five years since we did our last Music Stars knockout cup. This time, we thought we would give all the Cowley friends and acquaintances a chance to play along at home. Quite simply, we choose 128 music acts, past and present and draw their names out of a hat where each act goes head to head with another. Steven Neary, as he is in charge, chooses the song each act performs and the favourite song each match proceeds into the next round.

Here is the 2022 First Round draw:

  1. The Sweet vs Aztec Camera.
  2. Erasure vs ABBA.
  3. Savage Garden vs Tears For Fears.
  4. Blondie vs Marc Almond
  5. Stevie Wonder vs Madonna.
  6. Soft Cell vs Keane
  7. Gary Puckett & The Union Gap vs Alison Moyet
  8. The Eurythmics vs The Chords
  9. UB40 vs Dusty Springfield
  10. 10CC vs The Walker Brothers.
  11. ABC vs Simon & Garfunkel.
  12. Sandie Shaw vs The Manic Street Preachers
  13. Morrisey vs The Human League.
  14. The Undertones vs The Jam
  15. Elton John vs Billy Bragg
  16. George Ezra vs Wet Wet Wet
  17. David Bowie vs The Animals
  18. Radiohead vs The Supremes
  19. The Beautiful South vs Danny Wilson
  20. Secret Affair vs Blur
  21. Kylie Minogue vs The Kinks
  22. Shalimar vs Snow Patrol
  23. Bryan Ferry vs Madness
  24. The Four Seasons vs Fatboy Slim
  25. The Lightning Seeds vs Years & Years
  26. The Four Tops vs Kirsty McColl
  27. The Bee Gees vs East 17
  28. Ultravox vs Squeeze
  29. Matt Bianco vs Travis
  30. Donna Summer vs Paul Young
  31. Robbie Williams vs The Proclaimers
  32. Oasis vs Blue
  33. OMD vs Tavares
  34. Darts vs The Thompson Twins
  35. The Coral vs The Pet Shop Boys
  36. Culture Club vs James Blunt
  37. Harold Melvin & The Bluenotes vs Hue & Cry
  38. Leo Sayer vs The Stranglers
  39. The Police vs Level 42
  40. Queen vs Odyssey
  41. Lulu vs The Style Council
  42. Depeche Mode vs The Farm
  43. The Backstreet Boys vs The Rolling Stones
  44. KC & The Sunshine Band vs The Love Affair.
  45. George McCrae vs Talking Heads
  46. Coldplay vs New Order
  47. Yazoo vs REM
  48. U2 vs Kate Bush
  49. Chic vs Kool & The Gang
  50. The Tremeloes vs Spandau Ballet
  51. Dead Or Alive vs Paul Heaton & Jacqui Abbott
  52. Billy Ocean vs Take That
  53. Paul Simon vs The Tymes
  54. The Pretenders vs Amy Winehouse
  55. One Republic vs Justin Timberlake
  56. Sparks vs The Smith’s
  57. The Beatles vs The Black Eyed Peas
  58. The Killers vs The Verve
  59. T Rex vs Eminem
  60. The Small Faces vs The Streets
  61. Cockney Rebel vs The Mamas & The Papas
  62. The Chilites vs George Michael
  63. Fine Young Cannibals vs The Who
  64. The Housemartins vs M People.

Over to you….,

It may be ages before we announce the first round results. Within the Cowley house, things usually get very contentious with threats of confiscating salt and vinegar Chipsticks if Billy Ocean falls at the first hurdle.

The Bitterest Pill

2004. I can remember it like it was yesterday. A six monthly check up with the paediatrician. We didn’t know it at the time, but he didn’t have any experience with learning disability. I guess he had a free slot when Steven was initially referred. It always felt odd that Steven was the only teenager in a waiting room full of toddlers. That doctor was an arrogant sod. We had a great social worker at the time, who dropped in to see us straight from an MDT meeting. He was shocked because the paediatrician had just announced to a packed room that in his expert opinion, Steven would spend all his adult life in a locked secure hospital. He’d only met Steven once when he delivered that pearl of wisdom. I think he sowed a seed at that meeting that other professionals watered over the next six years.

Steven was due to have some serious dental work and we were concerned how he (and we) would manage it. Casually, the doctor wrote out a prescription for Epilim Chrono and reassured us that he would help reduce Steven’s anxiety. Not just for the surgery, but for more general, daily situations. I am ashamed that I just went along with it. I didn’t even Google Epilim when I got home. Steven knew. Just before we left, he threw a carton of apple juice over the doctor. It was obvious that there was mutual contempt between patient and doctor. I kept quiet.

18 years later, today has been the first day that Steven hasn’t taken Epilim since we collected that first prescription. Over the next 6 years, the dose was increased a few times and Steven came home from his year at the ATU with a serious Rhispirodone habit. And in that 6 years, his weight had doubled from the 13 stone he weighed at the paediatrician’s assessment session. The link was obvious, but we couldn’t get any medical professional to acknowledge that link. Far easier to write a statement for Justice Jackson which included the lie, “Mr Neary does not set or adhere to strict food boundaries.” I’ve lost count of how many dieticians we’ve met over the years, suffice to say there’s been enough to form a Blazing Squad tribute band. Even more difficult was finding a psychiatrist who would consider even a minimal reduction in the doses of the Epilim and the anti psychotic.

I wouldn’t say that I was passive throughout this time, but I could have been a lot more challenging. By 2015, Steven was now experiencing physical issues, mainly due to the huge weight he was carrying. One Sunday morning, after weeks of boomeranging between the GP and A & E, I took Steven to a private clinic just off Baker Street. We were there the whole day as the consultant did scans, blood tests, you name it, he did it. His final verdict was that without some serious weight loss, Steven would soon be dead. His liver, in particular, had been badly affected. He was confident that the weight could be reversed. It was incredibly moving, after so many years of apathy, to meet someone who combined expertise, wisdom and humanity. Needless to say, neither the GP, nor the psychiatrist would initially agree to reducing the medication. In fact, one locum GP was furious that I’d consulted a private service. Out of desperation I tracked down the court appointed psychiatrist who had given evidence at Steven’s hearing, four years earlier. Ethically, he couldnt intervene, but his advice, and his trust in me and Steven was invaluable.

Along with the support workers, I drew up a reduction plan. Out of the two tablets, it was obvious that the Rhispirodone was the most problematic. Steven was on 4 tablets daily at the time, so we devised a plan where one tablet was eliminated every three months. The impact was immediately transformative. Steven lost 8 stone in weight in as many months. And even better, there was no deterioration in his mental health. On the contrary, a sharpness came back that had long since been lost in the pharmaceutical fog. Approximately one year after our Baker Street excursion, Steven was off the Rhispirodone completely. The local psychiatrist insisted that we kept a stock to use as a PRN. That has been particularly shocking. We’ve only used them as a PRN a handful of times and each time, Steven has taken immediately to his bed and slept for hours; his speech becomes slurred and his usual orderly brain falls into chaos. Steven has worked this out and if he is in a meltdown, he has enough wherewithal to tearfully insist that he’s not given a PRN.

At the start of the Covid lockdown, we started a similar reduction plan with the Epilim. Inevitably, lockdown brought many changes to Steven’s normal routines, so it seemed prudent to take the reduction more slowly than before. What we forgot to factor in was the lack of exercise during lockdown, so Steven has put on quite a bit of weight since 2020. But he’s done it once; he can succeed again. He was starting from a much healthier position, despite the weight gain.

Yesterday was the last day of Epilim. Today, for the first time in 18 years, Steven didn’t have a bowl of tablets before his breakfast. It feels like an epic day. Steven has carried on as normal: a Style Council cd this morning and a Mr Motivator DVD this afternoon. We missed a trick in not getting him to exercise along with Mr M, but there’s plenty of time for that.

Here’s the shocking note to end on. I can’t honestly put my hand on my heart and state that the two different medications had any positive benefit on Steven’s moods or mental health at all. As I’ve explained there has been a detrimental physical impact, but the tablets were meant to serve him favourably. He still has the occassional meltdown, but they are shorter in duration and with the wisdom of age, Steven has a greater understanding of what is happening to him. It would be more truthful to say that he has got “better” as the medication has been cut down. The most alarming thing is the thought that the medication has had absolutely no positive impact whatsoever: the fact that Steven is less anxious in the world is down to maturity and confidence.

Despite the joy of this landmark day, that is a bitter pill to swallow. (The Jam, not The Style Council).

Faint Praise

Here’s a turn up for the books. I want to sprinkle a little bit of praise on to the infamous Downs Syndrome Bill that has finally made it through Parliament and is now law.

I wrote about the Bill when it was first being lobbied and got slaughtered on social media for my views. To be honest, I still feel pretty much the same, several months on. Despite, all the publicity and debates, I have no idea what the purpose of the Bill is and it seems such a flimsy, worthless document that I cannot, for the life of me, ever imagine it being used in a court of law to fight someone’s corner. There has always been a sense that there is a hidden agenda to the Bill and that feeling grows stronger with each day that passes.

As well as the lack of content, the other thing that the Bill has come in for a lot of criticism over is the brutal way that those behind the Bill dealt with anyone who they perceived as a dissenting voice. Anyone who asked questions received ruthless, and at times, abusive responses. Or complete silence. There was never any attempt to explain the opaque elements of the Bill, far less any attempt to win over the doubters. Blanked or belittled was the weapon of choice.

“Crikey Mark. If this is you praising the Bill, I’d hate to see you being critical of it.”

Nevertheless the Bill succeeded. Fairly smoothly too. We can speculate until the cows come home about the murky dealings going on behind the scenes, but I suggest that there are aspects of the Bill’s success that campaigners need to reflect on. Reject them, by all means, but we can’t ignore that the Bill is now law. Other proposed bills and campaigns (some that I’ve been involved in) have not succeeded despite the expertise, integrity, commitment and nobleness of the cause. Is there anything to be learned from the DS Bill?

One element that I think the people behind the Bill need to be praised for is the positive way in which the people who the Bill was aimed at, and there were several people with downs syndrome who became the “faces” of the Bill, were always presented in a positive light. The Bill was never interested in deficits. The narrative around the people’s lives was relentlessly cheerful and optimistic. The narrative was never about victims or the oppressed. Now, some might argue, rightly imo, that that led to an unbalanced representation, but I think there is less of an appetite generally for an horrendous story. A story of someone held in an ATU for many years may get some media coverage and that coverage usually leads to a couple of days of outrage, but there is very little evidence that the outrage leads to a positive outcome for the person at the centre of the story. A review perhaps; a concordat maybe, but no real action until the next story comes out with more outpourings of outrage. I don’t know whether that was a tactic decided by the DS Bill people, but they never went down that route. I can’t claim that not going down that road led to the successful outcome, but I do wonder whether it played a part.

A second (and I can’t say how much this sticks in my throat) aspect of the Bill was that it gathered support from the most unlikely sources. Perhaps it’s too obvious to say that if you want a Bill to be passed by a Tory government with a huge majority, it might be useful to have some Tory support for it from the outset. It might go against all of one’s political instincts, but that may be something the campaigner has to bracket off, if they are to be ultimately successful and get their Bill passed. My sense is that the DS Bill crowd instinctively knew this and exploited it for all it was worth.

Finally, and I suspect this may be the most unpopular piece of praise I want to acknowledge, is that the exclusivity of the Bill seemed to work in its favour. Many of the complaints about the Bill from day one were from people stating that the Bill was not inclusive. And they were right. But the Bill never claimed to be inclusive. It rigidly stuck to it’s idea that this was a Bill for people with downs syndrome and didn’t once entertain the idea that other people with learning disabilities, or autistic people, or physical disabilities should come on board. There was the occasional nod to the possibility that the Bill would ultimately benefit other groups, but I suspect that was just window dressing and only offered so as not to be seen as complete cunts. They stuck to their guns over this point and achieved a positive outcome.

I wrote in the first blog that I didn’t have strong feelings about the “exclusivity” of the Bill and got a lot of criticism from people that I have worked with on other campaigns. Sorry to upset them, but now that the DS Bill campaign is over, my feelings are just the same. Perhaps even stronger. We push every time for a campaign to include everybody. We put enormous time and effort into getting everyone on board. I have a nasty suspicion that achieving full inclusivity may be a Panglossian idea. For example, Rightful Lives has been very clear from the outset who they are campaigning for. However, every project we have run has been challenged by someone saying, “Why haven’t you included people with…..” A few months ago, we were given Neville Southall’s Twitter account for an evening to try and engage more people and I spent most of the evening and a few days after dealing with a small handful of autistic people who weren’t happy that in our exhibition, Rightful Lives had included people with learning disabilities alongside autistic people. Quite frankly, they didn’t want to be associated with the learning disabled. Now we can argue all we like that that is a churlish viewpoint to take, but it exists and every campaign has to tackle that dilemma at some point. Rightly or wrongly, the DS Bill bypassed all that by nailing its colours firmly to one particular mast and never wavered from that. The disability world, possibly more than any other identity group, is a very broad church and it needs a huge vessel if everyone is to come on board.

Anyway. Sorry if this has pissed you off. I know that after the Every Death Counts nightmare, I’m still trying to process my thoughts about campaigning. I suspect that campaigning in 2022 is a lot different than it was in 2010 and that things that worked in the past, may not cut any ice in the present. I don’t have answers, but this blog reflects the sort of questions I’ve been asking of myself.

No More Lies

It’s all a bit intense right now. I’m having lots of dealings with various council departments. None of it is going smoothly and quite frankly, putting all the separate incidents together into a whole, it feels pretty hostile.

Steven’s tenancy is up for its five year renewal. I don’t really fear that it won’t be renewed, but the process of renewal is a rocky road. We were stuck for ages because the Housing office mislaid the court order for my deputyship, so were refusing to discuss anything with me, without Steven’s permission. It felt at the time that that might be the crossroads we get stuck at forever. If they won’t talk to me and they can’t make themselves understandable to Steven in order for him to give his permission, the crossroads starts to have the consistency of quicksand. I think we’ve navigated that hurdle, but we’re now in the silence phase, so goodness knows what is happening.

The second issue is that I broke Hillingdon’s rules with the direct payments by paying the support workers a Christmas bonus. Obviously I didn’t know I was breaking the law. At the time it just felt like a human and sensible business decision. I’ve had my arse kicked and been made to promise that I’ll never do it again, but the odd thing is that I cannot find any official policy that paying a bonus is unlawful. There is nothing in the direct payment contract I signed in 2014. I’ve downloaded the Council’s current DP policy and in the 21 pages, I can only see one short paragraph of dos and don’ts and bonuses dont feature. I’ve asked to see the rules (after all, there could be other things I’m doing wrong) and have been told it will take some time to put a response together. But I’m only asking to see the policy document that they claim already exists. I suspect that now that I’ve been through the humiliation of the telling off and have been put in my place, things will go silent on this too.

Thursday brought the straw that broke my camel’s back. It’s months since the council reviewed Steven’s Community DoLS and we had to go through the capacity test and best interests assessment again. I thought the paperwork had been sent to court months ago. No. The court forms have only just been completed and they want me to write my witness statement. My statement that I agree that Steven lacks capacity to consent to his support arrangements and that those support arrangements are depriving him of his liberty.

I can’t do it. Seriously, I really can’t write the statement. Last year, I half played the game and it didn’t go down very well. I wrote that under the terms of Lady Hale’s acid test, I could see that they could come to no other conclusion that Steven was being deprived of his liberty, but that such a conclusion is a nonsense when one examines the day to day reality of his life. The court asked me whether I wanted to challenge the decision, but I was going through the prostate treatment at the time and didn’t have the energy. Subsequently the Community DoLS got rubber stamped.

Dying sharpens up your priorities. I can’t lie anymore. I know that may sound ridiculously pompous, but the truth has never been so important to me. And because he is the most important person in the world to me, Steven’s truth is the truth I am least willing to compromise. Every minute of every day I spend with Steven, I know that he is not being deprived of his liberty. The idea is not only preposterous, but disrespectful of all that he holds dear. It is “silly talking” on the grandest and most insulting of scales. It is not his truth. It is not my truth. And I cannot bring myself to lie, all for the sake of a quiet life.

I have no interest in challenging this in court. I don’t want to be a test case. In what time I have left, I’ve got things to do: a book to write, Pet Shop Boys compilation tapes to construct. Steven doesnt understand the concept of a lie, so you only get the absolute truth from him. It feels important that, at the end, I let him model the truth to me, and for me.

Holding On To My Hat

You wait ages for a life changing event and then three come along within 48 hours.

On Tuesday I got a cab home from Steven’s. The cab driver was Abdul, one of our favourites. He also took me home on Sunday evening when he asked me how the new book was coming along. I told him that I needed some additional motivation and was planning on visiting Seer Green, the home for 200 years of the Worley arm of my family, the next day in the hope that inspiration would strike. Abdul thought this was a jolly good idea. So on Tuesday he wanted to know how the trip had panned out and I was forced to admit that I had bottled out due to the pissing rain on Monday.

“I finish work at 2.30. I will come back and pick you up. We will meet your Ghosts together.”

So a couple of hours later, having scribbled down the post codes of the four places I wanted to see, I was back in Abdul’s car, having a beautiful conversation about the nature of family duty. Abdul’s take was that it was my duty to tell the stories of these long dead relatives so that we can understand that everyone has a purpose and that everyone makes a difference. I agree with him.

After Lines was published I was contacted by someone from the Seer Green Historical Society who casually announced that in the 1990s a new housing development was built in the village and was named Worley Place in honour of the contribution the many Worleys had made to Seer Green life. That was my first port of call. I actually got a bit cross. It was a gated development so we couldn’t get in and a quick Google showed that the average cost of the houses was £1 million. I couldn’t help but think about my 3x great grandfather who spent the last 17 years of his life in the workhouse and how seering poverty had marked much of the Worley’s village experience.

I found the spot where Pondstiles chair factory had been and where William had worked before his life fell apart. Next door to the factory was the Jolly Cricketers pub where he tried to drink away his pain. And finally I found the old bakers, which back in the 1850s was owned by Mr Lofty and it was Mr Lofty who took in some of William’s children after their mother died giving birth to her 8th child in 10 years. Coming away we drove down Potkiln Lane which would have been the route that William junior, his wife and children on their horse and cart had taken, that day in 1860 when they ended the Worley’s association with Seer Green and moved to my home town of Southall.

The next morning I got a phone call from the hospital. Five weeks ago I had some biopsies taken and the nurse called to inform me that they had revealed some cancer cells and that I would need more scans to determine whether these are residual cells or a recurrence. This obviously means that the hernia surgery will now be postponed for a fourth time. To be honest, I’m an old hand at getting this dispiriting news by now, but each time I’m told that the cancer has returned, the long term outlook gets bleaker. It makes my need to get on with the writing more acute.

Whilst I was on the phone to the nurse, the postman delivered a package. 20 odd years ago I read the book, “Five People You Meet In Heaven.” The basic premise of the novel is that you die, but before you can enter heaven, you have to encounter five people that you impacted on during your life and demonstrate that you understand the lessons of those encounters. It could have been a ghastly schmaltzy book, but it is saved because the hero is a grizzled, sour old man who doesn’t go through an overly sentimental redemption. The package that the postman delivered was the DVD of the 2005 film version of the book. I only found out they’d made a film whilst I was having an aimless Amazon browse, the afternoon I was waiting for the epidural to wear off after the biopsies. An interesting synchronicity.

On Wednesday evening, I Watched the film. Thankfully, it wasn’t too Hollywoodfied and it had shades of A Matter Of Life and Death to it. Jon Voight was perfectly cast as Eddie and the screenplay remained true to the book. As the movie unfolded, I realised that I had forgotten the five lessons that Eddie learned before he entered heaven. Two of the five people he met, he had no recall of. The lessons were: Forgiveness, Sacrifice, Loyalty/duty, Love, and that everyone has a purpose. I had my opening chapter to the book.

The last lesson brought me back to Tuesday afternoon. Abdul didn’t want to take any money for the journey. I was uncomfortable with that as he’d given up two hours of his time. In the end, we settled on a compromise. As I got out of his car, he said:

“Mark, writers have to write. I’m just happy that I could play a small part in helping you.”

If this is the final lap, Abdul might be one of my five people.

Two Heather Smalls

Parents and family members of people with learning disabilities frequently attract criticism for “stealing” their family member’s voice. For speaking over them. Or for not providing the opportunity to have their own voice heard. This criticism is also leveled at the media too and key allies are routinely admonished for only being interested in the parent’s voice.

I have mixed feelings about this. Especially when the issue is about people with learning disabilities who are detained in ATUs. There is no question that the words of people like Alexis Quinn and Jack Moore (to name just two) carry a pretty powerful punch. It should be remembered though that Alexis and Jack were only able to get their voices heard AFTER they were discharged from their detention. It is also absolutely true that the world will only really find about life in an ATU from people who have experienced it first hand and that is something that parents and allies cannot lay claim to. The cry that is often heard towards parents is: “You are taking our space.” Obviously, one cannot move into a space that is currently filled, but here is where I diverge from the popular critical opinion. In my view, we are talking about different spaces anyway. The space for a person with learning disabilities may be closed off, but that’s not because the parents are occupying that space. They are in another space. It may be seen as lesser than, but it’s not the same space. A parent will have their own story about how the family have been impacted by the detention. It’s not an invalid story; it’s just a different story. I will return to this point shortly as it’s the main thrust of this post, but I believe there are two other points that are relevant here.

It is near impossible to hear from the person whilst they are being detained. In fact, active steps are taken from the detaining body to discourage their voice from being heard. There are many reasons for this that have been well documented before by myself and others. So, how do you get to tell your story whilst it is actually happening? It’s far from being the best solution, but as far as I can see, that as things stand the only option is to rely on someone else to tell your story for you. It’s disappointing, but there is no shame in that. As has been shown time and again through the great work of people like Ian Birrell and Jayne McCubbin, it can be a very effective second option.

My other problem with insisting that the only person whose story is worth hearing is the detained person with the learning disability is that it assumes that they are able and willing to tell their story. One of the first lessons you are taught in counselling training is that no matter how beneficial you feel it might be to take your client down a particular line of inquiry, this must be resisted until they raise the subject themselves. Imposing your want onto the person is unethical and possibly abusive. This presents a big issue for someone who may lack the capacity to tell their experience, even when it is in the public interest for the tale to be told. In such situations, one may have to accept that for the good of the person, it may be that the story has to remain untold. Or that it is told from a very different perspective.

It took me ages to get off to sleep last night as Steven triggered some memories and these thoughts during our goodnight routine in the hall. It’s a complicated routine every night that involves me congratulating Steven for it being a “perfect day like Lou Reed.” It also involves a Basil Fawlty impression from the episode where Basil is woken up in the night by the flirty French guest. And it ends with Steven gleefully announcing what music dvd he is going to watch the following day and we sing a couple of snippets from the upcoming treat. (Today is East 17’s “Pie & Mash” VHS recording). In the midst of last night’s routine, he reminded me of something awful that happened to him in the ATU. I’ve told the story several times before. It was the time that two of the staff thought that it would be good sport, after an afternoon of a downpour of rain, to throw Steven’s shoes into the garden and push him out through the door to retrieve them in the mud, whilst he was just wearing his socks. They then chastised him for making his socks dirty. They both found this highly amusing. I know that Steven hasn’t made this story up. He doesn’t operate that way.

Now, 12 years later, I find it impossible to judge the impact that event has had on Steven. When he tells the story, as like last night, it is like he is reporting a story on the 6 o’clock News. In tone and presentation it sounds similar to some of his other often repeated tales. Like the Thursday morning in 1998, when we saw Brenda Nicholson (his classroom assistant) get on the train at Ruislip Manor whilst Steven was eating a packet of Jelly Tots. Or the time we were going up the escalator in WH Smiths and saw Heather Small at the counter, purchasing a magazine with her own photo on the cover. In Steven’s head, I think these stories have been filed under the headings: “Jelly Tots on the train” and “Two Heather Smalls.” I don’t want to attribute any ongoing trauma to the shoes story because it might not be there. What they did to him was appalling, but I can’t honestly say how Steven has framed the story.

But there’s another story. My story about the shoes event. I wasn’t there obviously and the fact that I wasn’t there is where my story always starts. The feelings of guilt and shame that I couldn’t protect him from those two cunts. Steven told me the story long after he came home and I did mention it at the next MDT meeting I attended. The social worker laughed and brushed it off with a line about “Steven’s fantastic imagination.” I still want my five minutes down a dark alley with her too. My feelings have taken up residence in my gut. Most of the time, I’m unaware of them and life goes on as normal, but every now and again, they will surface and I get the sharpest sense of what my cancer looks and feels like.

That’s it. That’s my story. It’s a different story from the one Steven may tell, but it doesn’t make it an invalid story, does it? I’ve also told his story, albeit without any of the personal feelings that he is left with from the experience. I don’t think I’ve taken up his space. I’ve spoken from my Dad space.

I could go on. I’d like to go on, but Steven is calling from the living room:

“Dad, come and look. East 17 is singing West End Girls. Anthony Mortimer is singing Neil Tennant’s bit.”

That’s a space that I think is big enough for both of us.

I Want To Hold Your Face

There have been two examples in the last two days that show how we’re a bit stuck in the 20th Century here in the Cowley house.

I had six clients on Friday. It’s ages since I’ve seen six people in one day. One of them was nursing a terrible hangover as it had been his 27th birthday the day before. He started talking about a scene from Withnail & I and told me that although he had seen several clips from the movie over the years, he had never got around to watching the full film. I’ve got it and seen it, so went over to my DVD unit and intended to give it to him as a belated birthday present. He stopped me:

“Mark, thanks, but don’t bother. I don’t have a DVD player. Or a CD player. It must be 10 years since I watched a DVD or played a CD.”

In that one sentence I went from feeling like an empathic companion on his person centred journey to Methuselah.

Yesterday at Steven’s, we were halfway through his Saturday compilation tape when the stereo packed up. It has served us well and it wasn’t a problem in the moment because I keep a spare of all home entertainment consoles (stereo, DVD player, VHS machine) in my bedroom. It only took about five minutes to set the new one up and dispose of the old one, so we moved seamlessly from The Housemartins to The Killers. As he wandered off with the old player, Michael, the support worker said to Steven:

“Steve, we need to digitize you, mate.”

This troubled Steven and I had to reassure him that the procedure wouldn’t involve surgery in a hospital, nor the complete removal of all crisps from his daily menu. I tried to explain what Michael did mean and I struggled. After all, I’m more comfortable buying a DVD from HMV than browsing Netflix.

And for Steven, it’s not a case of either/or. The manner in which he receives his entertainment straddles several time zones. He’s at home on You Tube. Last weekend, he sent me packing about 2pm because he wanted to get on with his online viewing and according to the support worker, he was still on the computer at 10pm. Every now and then, he’ll show an interest in one of my Spotify playlists and takes my tablet off to the toilet with him. For some reason, he associates T Rex on an android with having a shit. But when it comes to the crunch, Steven is happiest with a physical format. He’s going through a Men Behaving Badly phase at the moment, which we have in several formats. We’ve got all the individual DVDs, the boxed set, he’s got every episode bookmarked on his You Tube channel, but he’s chosen to watch the VHS versions. I don’t think it’s just because he finds a video cassette easier to manage.

After a few minutes of me trying to explain the process of digitizing our home entertainment catalogue, Steven had grasped the concept and was horrified.

“No. Steven Neary wants to hold the picture. Steven Neary wants to read the box. Steven Neary wants to touch Benny and Bjorn’s face in the picture.”

And that’s it. I totally get that. It’s a tactile moment. Some sensory satisfaction in holding the book/CD/video. Steven struggles to read words, but he can spot numbers, so before he slots the cassette into the machine, he stands there holding the box, saying; “1976. 2. 18….” I suspect he gets into the picture with the artist. He strokes Mr Bean’s hair. And he goes as red as a beetroot and feels “all soppy” when he puts his Kylie, “Can’t Get You Out Of My Head” CD on. (You know the one where she’s wearing that white outfit). Obviously, I’m not in his head, but I think that watching something online is a completely different sensory experience for him. Because isn’t it for all of us?

So what’s the upshot of all this? Well, I was searching EBay at 11 o’clock last night for a reserve stereo system with twin deck cassette player. And then I went off searching for bookcases. In my flat, my books are spilling over into the most inconvenient places and Kindle doesn’t quite cut the mustard for me. I want to be able to touch and smell my latest Bunyon.

I’m the opposite of Bob Geldof. I love Mondays. I’m not at Steven’s. I don’t have any clients. I have the whole day to myself. I potter. I might pick up a book and settle on the sofa for an hour with it. If I’m cleaning the grill pan, I might go to my Dusty playlist on Spotify and let her beautiful voice accompany me through the chore. I might even treat myself to a packet of chocolate Hob Nobs and slip Richard E Grant into my DVD player. If I’m writing, I’m more than likely to write onto an A4 pad than type my words of wisdom into a Word document. I like variety.

And bang on cue, Steven’s just interrupted my typing this post by coming into my bedroom with the Sparks “Propaganda” CD and wants to know why Ron and Russell are tied up in the back of a speedboat.

As you can see, our resistance to digitizing the Cowley house is quite strong.