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.

The Mess In My Head

It’s been an early start to a Sunday morning in the Cowley house. I got up early to be at the newsagents when it opened to pick up a copy of the Sunday Times. And Steven was prevented from his usual Sunday morning sleep in on account of a visitor.

The article in the newspaper included an interview I gave to the writer, David Collins, last week. The story is about a 24 year old autistic man who has been kept in a seclusion unit for four years. The article describes the hatch through which “A” is fed and medicated as his only contact with the outside world. It isn’t contact with the outside world though. It’s contact with a hospital corridor and a member of staff, passing a plate through the window. It’s a familiar, distressing story and the full article is here:

https://www.thetimes.co.uk/article/young-autistic-man-confined-in-hospitals-former-storage-room-for-four-years-lcp8pn26p

Why is there a mess in my head? I sat in my bedroom reading the piece, whilst Steven outlined his plans for the day with Francis, in the living room. The plan, after a bowl of Frosties, was to watch a greatest hits of 1974 VHS tape.

In the middle of the day’s timetabling, Steven’s next door neighbour, Martin, popped round. He is going to lay a laminate floor in Steven’s bedroom and needed to check the measurements. Steven was happy to see him and Martin greeted Steven warmly: “Hello, how’s my old mate, Steven Neary?” Within five minutes he had measured up and left with a promise to return midweek to fit the whole floor. On to 1974. The Sweet, Alvin Stardust, Suzi Quatro. Whenever Steven watches Sparks, he always internalizes that he’s the cause of Ron’s “cross face”. “Ron is cross and looking at Steven Neary because….” And I’m expected to finish the sentence and come up with an explanation for Ron Mael’s stroppy look.

The above paragraph is why my head gets into such a mess.

Steven’s life is pretty darned good. But it’s fragile. The fragility has got nothing to do with him; he isn’t the cause of why it is fragile. All that is good about it could quite easily disappear overnight and he’ll become again an “A” in a seclusion room. No friendly chats with Martin. No schedule planning with Francis. No Ron Mael getting cross with Steven because Steven didn’t save any Pringles for Dad. All those moments of joy could be consigned to the same history book as Devil Gate Drive.

It warms every cockle of my heart when the cab driver gives Steven a Christmas present as they get back from swimming. But there are knives in those cockles, that twist sharply whenever something good happens. An uplifting moment carries a down as much as night follows day. In my most messed up head moments, I find myself arguing with a disinterested seclusion room guard about how Steven might enjoy a few minutes in the company of Mr Stardust. The fantasy argument always goes the same way though.

This is life. It can be quite a torment. As I clear some of the mess away, I can find myself feeling thankful that there are people like Martin who is prepared to see Steven as a fellow human being.

One just has to take the rough with the smooth.

1964

A couple of weeks ago, I read, what struck me at the time as a quite alarming statistic, that the three least chosen subjects in 2020 for O Level and A Level were: History, Geography and French. And then the thought occurred that perhaps it has always been so. I did two of those subjects for A Level and there were only three of us in the French class and not that many more in the History class.

That reminded me of the great Featherstone High School scandal of 1976. All through secondary school, Mr Bhardwaj had been the main history teacher. He was a lovely man and brought all manner of the past to life for eager history gluttons like me. We sailed through our O Level and eagerly signed up for two years of Mr Bhardwaj’s history lessons. Only, in the summer of 1975, he retired and we returned to school in September to find a brand newly appointed history teacher in his place. I forget his name, but he was a very charismatic American chap. For the whole of Year One, we studied Outlaws. The new teacher had quite a thing for them and we immersed ourselves into the lives of Ned Kelly and Bonnie & Clyde. Of course, when punk rock was breaking through, these gangsters were tremendously exciting. Don’t tell me you never watched Warren Beatty and Faye Dunaway and not experience a small frisson of excitement as they ended up riddled with bullets. So, in the summer of 1976, we sat down to our mock A Level examination and you can imagine our surprise as we discovered the exam paper didn’t include a single question about the aforementioned villains. We couldn’t answer any of the questions. The Headteacher launched an immediate inquiry and we returned for the second year in September 1976 to be told that the American teacher had completely disregarded the whole curriculum to satisfy his own interest in lawbreakers and as they couldn’t find a suitable replacement, and we’d have too much catching up to do, the course was to be cancelled. The end of History.

I mention all this because we’ve had quite a historical Christmas, encapsulated in a small scene yesterday afternoon. Steven still expects a small collection of VHS tapes (There’s a history lesson in itself) among his presents. Each year, this task gets harder. Not only has he already got a vast collection, but they’re very hard to get and can cost an absolute fortune. I came up trumps this year by finding an Australian VHS boxed set of all the Mr Beans. We’ve got all the episodes many times over on various formats, but this Australian collection came in new sleeves and the running order of the episodes was different to the UK versions. That proved enough novelty value to occupy Steven excitedly for most of Christmas Day. By yesterday, we’d moved on to the other VHS tapes and gobbled up Steps Live; The 1997 Party in The Park and Animal Hospital. The last cab off the rank was The Greatest Hits of 1964.

Steven doesn’t mind black and white, which is more than can be said for the support worker, who retired to do the ironing after Gerry & The Pacemakers. Whilst I’m not sure that Steven fully understands dates, he has an acute instinct about time and can slot history quite successfully into a timeline. So, for the first couple of songs, he wanted to know what “Little boy Mark Neary” was up to whilst Cilla was singing “You’re My World.” He gets tremendously excited when I tell him about adventures I had with people like Uncle Bob, who he only knows from snaps in the photo albums. I try to flesh out the stories by adding in reminisces of things he did when he was five, so he was over the moon to learn that as Sandie Shaw sang her debut hit, little boy Mark Neary was at Windsor with Nanny Beryl and Granddad John, feeding the swans. Finding out that I had my finger bitten by a swan, just like he did in 1995, fills him with joy.

We were towards the end of the video, when Steven summed up 1964: “When little boy Mark Neary went for his first day at school, all the ladies started singing.”

Francis (ironing complete and back in the living room) and I roared with laughter. Steven combined two events and made them sound connected. But he was right. As well as Cilla and Sandie, 1964 was also the debut year for Lulu, Little Eva and The Supremes. And Dusty had only started out the year before too. It all felt very satisfying. For a small moment, I had become Mr Bhardwaj and Steven had now added another chapter to his own history book. And not a gun tooting, bank robber in sight.

I had another quite moving moment of history on Christmas morning. A few months ago, in a moment of self pity, I whinged to my sister that just once, it would be nice to open a present from Steven that I hadn’t brought myself. A nice surprise present. Wayne brought a bag of presents over on Christmas Eve, but I didn’t notice until the big morning that there was one labelled “To Dad. From Steven.” This year is the 150th anniversary of the forming of Southall Football Club and you know how much of my childhood I, and Jayne spent there. Steven had got me a replica shirt with the anniversary crest on it. It was perfect and I had to wipe away a little tear.

Anyway, that’s enough of memory lane. We’ve got another day of viewing to begin. We’ve done all the VHS tapes, so today we can move on to the music DVDs. The Killers, Annie Lennox, but the one Steven has chosen to watch first is Tony Christie at the V Festival.

One sleep and we’ve jumped forward by nine years. We’re now in 1973. And as Tony sings Avenues and Alleyways, Steven will quiz me about what big boy Mark Neary was up to at the time.

I’ll probably tell him about the time his Uncle Bob went on Sale Of The Century.

Seasonal Trevor

Here’s a story from yesterday that describes how Steven remains deprived of his Liberty in his own home.

Trevor, Steven’s old chum from the Virgin Active days, popped in. Trevor is 91 now.

Long time readers of this blog may remember Trevor. He is the chap who the manager of Virgin Active thought Steven was going to hit, so banned Steven from the club. Trevor was deeply upset by this and tried to get the manager to change his decision, but to no avail.

Since that day, Trevor has made an annual December visit to Steven, bearing gifts of mir and a box of Marks and Spencer biscuits. The biscuits go down a treat, but we’re never too sure what to do with the mir.

Every 1st December for the past 8 years, Steven runs through his checklist of December expectations and immediately after, “Dad’s going to buy the Christmas Cheeselets”, he reminds us that “Trevor’s coming with some lovely biscuits.”

Yesterday was that day:

“Right Steve. Are you going to tell Trevor all your good news?”

“Trevor. Abba is back. Is Trevor a happy man now?”

Trevor sings a couple of lines of Don’t Shut Me Down. We all join in.

Everyone is happy now.

More Bills

Bollocks. I’m just going to write what I feel and deal with the fallout later.

In 1992, I went to see the Gloria theatre company’s marvellous musical adaptation of the Ruth Rendell book, “A Judgement In Stone.” Sheila Hancock won several awards for her lead role as the housekeeper, Eunice. As I had to wait for my wife to finish her business in the Ladies, I missed the opening three minutes of the play. What I didn’t realise until many months later is that the production had used the conceit, rather like Blood Brothers, and given the ending away in the first scene. So, ignorant of this, I watched on in horror as the nice, benevolent Ms Hancock was revealed to be a mass killer in a terrifying denouement.

Why do I keep thinking of this play whenever I read anything about the much publicized Downs Syndrome Bill?

I’ve been trying to write this blog for the past few days, but keep deleting big chunks of it. Through fear. The fear of saying something that will be seen as heinous.

I think the people with DS who have appeared in all the publicity are being used.

There, I’ve said it. What an awful, bloody patronizing and condescending thought. Block me. Unfollow me.

A few years back I spoke at the Learning Disability Annual Conference. There were several stalls in the main foyer of the venue. One was run by Mencap and there were about four people with downs syndrome handing out leaflets, all wearing T shirts with the words, “We Are Here” emblazoned on them. The Mencap people who didn’t have a learning disability weren’t wearing the T Shirts. I was so unsettled by this, I gave up on the conference and retired to the bar for the rest of the day.

Between 1998 and 2013, I worked for a counselling agency that hired rooms in a church in Uxbridge. Every Monday and Friday, the main vestibule was handed over to a local disability group for their cafe. On a typical day, there would be five people running the cafe: three people with learning disabilities, a young lad with cerebal palsy and an elderly, matriarchal figure, peculiarly reminiscent of Sheila Hancock before she went on her killing spree. Nobody wore T Shirts with trite messages on. If your cheese toastie arrived undercooked or burnt, you could complain to any of the five staff on duty. It was chaotic, but it didn’t just feel inclusive; it was inclusive.

So why do I keep getting a sinister edge to the DS Bill. At face value, it reads (and I’ve read it several times) as a particularly wooly piece of writing. It doesn’t even feel like a piece of legislation at all. I can’t imagine, if the bill is passed, it ever being used in a Court to hold an official body to account. It’s all about encouraging authorities to do the right thing, rather than compelling them. And let’s face it, if the authorities are still willfully ignoring or abusing the Mental Capacity Act 16 years after it became law, what chance does a Bill that only nudges people to act lawfully have? We’ve already got tons of laws anyway. I’ve used the MCA in the above sentence as an example, but I could quite easily have used the Care Act, the Equalities Act, the Autism Act and several others.

Lots of commentators have cited the fact that the Bill only focuses on one group of disabled people as problematic. I must admit, I’m not too fussed by that. Look at the mess the LGBT+ community are in for trying to satisfy the needs of very diverse groups of people. If the people behind the DS Bill can come up with a compelling case as to why this group needs its own legislation, then good on them, is how I feel. Up until now, I haven’t read anything that makes the case that there is good reason why this Bill only applies to one group. I’ve seen several people behind the Bill, rather benevolently assure doubters that other groups will benefit in the slipstream of the Bill. That may be true, but it doesn’t stand as a reason for the Bill’s narrow remit.

Some of the criticism I’ve read, although well meaning, tries to drill down in to a Bill that is utterly vacuous. It’s like taking a Black & Decker to fresh air. Two of the usual complaints have reared their head. Why is it being driven by families and allies and not learning disabled people? I guess it’s a fair point, but it’s a distraction. Another distraction is the predictable debate about Easy Read versions of the Bill. To me, that’s another red herring. Steven, like many of his peers, can neither read nor write, so an Easy Read version would be as useless as the full version. It’s a discussion for another day, but I’d like to see verbal and visual presentations of the Bill rather than clip art easy read versions. That might bring a few more people into the loop.

Some of the groups who have been plugging the Bill to death are just plain bizarre. Or perhaps to avoid libel, I should say that their involvement is bizarre, not the groups themselves. Christian Conservatives? Traditional Catholic Femininity? When did their charabanc of support suddenly arrive on the scene? And as ungracious as it may sound, when you see Jacob Rees Mogg taking part in a photoshoot with some cuddly youngsters with DS, one can’t help but bring to mind Robert Helpman as the Childcatcher in Chitty Chitty Bang Bang.

I’m going to end in what the Bill’s backers would probably describe as entering into paranoid territory. If the intent behind something isn’t clear, then one starts to assume there may be a hidden agenda. This Bill seems to have come out of nowhere. It raises far more questions than it answers. It hasn’t got any welly to it. It hasn’t even brought on board all the people it claims to represent. It has used people for its own ends.

What the bloody hell is the point of it?

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.