The Anniversary Waltz

I’m writing this post whilst doing 12 miles on my exercise bike. I haven’t got anything to say really except I’m writing this post whilst doing 12 miles on my exercise bike.

Actually, I have got something to say. Sod off Facebook and your glee at poking your members with memories from their Facebook past. I don’t know whether its Memory algorithm has gone on steroids or whether I always have action packed Januarys but the memories are coming thick and fast at the moment.

The last two years are getting a lot of memory recycling right now. January 2018, I posted several photos of me to mark four months back in the gym. I had never looked or felt fitter. Facebook memories programme lacks hindsight though, so I’m left with looking at these “hench” photos with the knowledge that I had a large tumour growing in my bladder at the time and one of the major arteries to my heart was corroding at a remarkable speed. The camera sometimes does lie.

This morning I was reminded that it was a year ago today that I came home after a week in intensive care following the cancer operation. The original post is suitably brief, befitting my total exhaustion at the time but the Facebook prompt means that a year on, I’m sidetracked by a trip down catheter lane. My main memory of a year ago today, which I didn’t record on social media, was phoning and speaking to Steven for the first time in a week and his refreshing disinterest in my week long adventure. The whole conversation was about blackcurrant Fruitellas and Bernard Cribbins’ appearance in Fawlty Towers. And by crikey, was it a relief to have that conversation. My other memories of my first day home are the lovely roast dinner my sister turned up with and the excruciating pain from the catheter now that the hospital had taken me off all pain relief.

This Facebook memory jogger wrongfooting is going to last all 2020 because this year marks the 10th anniversary of Steven being kidnapped to the ATU. In those first few weeks, I took to Facebook big time and reading back the posts a decade on, I can see the state of shock I was in at the time. Short, one sentence posts – a scream of bewilderment. “They said I can’t visit for a fortnight! How can they be so cruel to him?” “In tears. They just phoned me to say Steven had kicked one of the staff. He (Steven) must be so distressed. What can I do?” I think that over the next few weeks, I became more focused and found my love, belief and balls but it’s upsetting to be reminded of those first couple of weeks.

I always have eventful Januarys. Both my parents died in January. I often leave jobs in January. Steven had his big liver scare in January. And Pilot recorded a song about the year’s opening month. I don’t do half as much in April.

I’m looking ahead to 2021 and what Facebook might nudge me about from this current year. This month so far has been about my attempts to get some weight off and fitness back prior to my hernia operation. And the new book. I teased a few weeks back that I’m going to serialise it on this blog. That is still the plan but I want to have about 10 chapters in the bag first in case I dry up or get kidnapped by Bernard Cribbins. Well, you never know what’s waiting round the corner.

Except with Facebook you do. A daily diet of reheated memories, some that comfort, some that are joyous and many that stop you dead in your tracks in the present and hurtle you back to a place that you’ve long thought you’ve left.

 

 

Dictionary

It’s arrived. I’m perspiring with excitement. 686 photos of everyone from Alvin Stardust to Yazz.

This is co production. This is working in partnership. This is me and one of the support workers creating something that is going to give Steven hours of pleasure. It will also put the fear of God into any casual Cowley visitor as Steven quizzes them about the name of the woman sandwiched between G4 and Gary Numan (It’s Gala).

Here’s a few highlights from the annual:

And once Christmas 2019 is done and dusted, we’ll start work on the birthday 2020 book – Steven Neary’s Greatest Pop Videos. (I’ve already downloaded the first 321 images).

Cowley Cheer

As I get older, I become a more emotional Hector around Christmas time. It’s people’s kindness. It gets me every time.

Steven returned home yesterday from his water aerobics group, clutching a large tin of Quality Street and grinning like a Cheshire cat. The chocolates were a present from his regular driver, Steve. I phoned him later to thank him and was cut in half by what he said. “I love that guy. He approaches life in exactly the right way. If I’m feeling cheesed off about something, Steven always puts it in perspective”.

A similar thing happened the day before. Trevor popped round with his annual box of biscuits. Regular readers may remember Trevor. He’s Steven’s 87 year old mate who sprung to Steven’s defense when he was banned from Virgin Active 6 years ago. A couple of years before that, The Village People were on the radio in the changing rooms and Trevor was singing along. Steven was dead impressed by that and joined in and a great relationship was born. Fast forward 8 years and Steven gleefully opens the front door and greets, “Trevor. In The Navy”. And they both start singing. And that’s it. Trevor hands over the biscuits, Steven hides them in my wardrobe until Christmas Day and carries on with his business leaving Trevor to have a chat with me or the support worker on the doorstep.

On Monday, I spoke to a roomful of social care professionals and legal people about the benefits to Steven of living in his own home as opposed to a more institutional setting with other learning disabled people. There was a strange preoccupation with the “preperation” of Steven for a life in his own home. I find this kind of framing very tricky because it is so far removed from the way I view life.

“How did you decide that the time was right for Steven to be living more independently of you?”

“I didn’t. He made that decision. Probably in the same way that everybody in this room decided to fly the nest”.

“But was there a moment, or a period of time, when you knew the time was right?”

“Yes. At the time, Steven used to watch Fawlty Towers every Thursday afternoon. And one day, I heard one of the support workers say, ‘And Harry said you’ve become so terribly pretentious. And I said, pretentious? Moi?’ (Rest in peace Nicky Henson). And in that moment I knew that there were other people in Steven’s life who were interested enough in him, cared enough for him and his world, that he was going to be okay without me around all the time”.

I could see some of the audience struggling with wondering whether I was being flippant. But then I noticed someone’s eyes filling up and that was good enough for me.

I’ve just received a text from one of the support workers. He’s been working on a book for Steven for Christmas which he’s titled, “Steven Neary’s 686 favourite Pop Stars”. He text me to let me know that its arrived from the printers. I’m beyond excited to see it when I go to Steven’s tomorrow but nowhere near as excited as Steven will be when he opens it on Wednesday. “Dad. Look. It’s MC Sar and the Real McCoy. Dad. Look. It’s Tears For Fears. Kurt’s got his little pony tail…..” I’ve paid Des of course for his efforts but what a guy to spend his time compiling such a valuable compendium.

Merry Christmas.

A Cereal

Goodness. It’s been over a month since I last wrote a blog post. Prepare yourself for a long one. There’s some interesting times ahead.

In a few weeks time, we hit the 10th anniversary of Steven being kidnapped. It’s not really an anniversary to be celebrated but it is one to be marked in some form or other. More and more, the whole experience feels like an old history. A history that doesn’t have much relevance to the present tense. Steven and I are very different people to the men we were back in December 2009. Our lives have changed dramatically in the past 10 years and for the most part, for the better. I’ve never been able to adopt the typical victim role and I certainly don’t see Steven or me as “broken” or “had our lives ruined”. Quite the contrary. The unlawful detention has opened doors that have liberated us. I became a writer and a public speaker and I’m bloody grateful for that opportunity. Standing up for ourselves in 2009 has left a message that we’re not to be messed with and that’s enabled Steven to have the fulfilling and content life he has now.

My operations this year have changed me, hopefully temporarily. My skin is considerably thinner. I’ve tried to get back to my old leathery toughness, or even a rough suede but the truth is my epidermis is as tough as a Christmas cracker hat. That’s why I don’t do social media anymore. I do find it much less of a safe space as it was a couple of years back. I don’t want to write a nostalgic post about watching Pans People on Top Of The Pops and then have a pile on with accusations of misogyny and all sorts. I abhor the Twitter trend of the snidey, passive aggressive sub tweet. It happened to Rightful Lives a couple of weeks ago where we were suddenly attacked as “Corbyn supporting autism campaigners”. I saw it again the other day happen to a friend being described (anonymously) as a troll and it sends me into a rage. It’s weak, nasty and takes me back to my age when I would have been enjoying Pans People strutting their funky stuff. For me, social media has become a minefield of potential insane explosions and I quite value my sanity.

The other truth for me is that I don’t have the same enthusiasm for the issues I used to engage with. I feel that campaigning has changed a lot since the Get Steven Home days and not necessarily for the best. I’m uneasy with some of the egos. I don’t really like all the “hero warrior” stuff. I don’t aspire to be an ambassador. I can’t describe myself as passionate. And let’s face it, the story of Steven’s fight belongs in the museum now. The law has changed. I don’t want to be Bonnie Tyler still singing Total Eclipse Of The Heart 40 years after it charted.

My plan for my convalescence back in January was to write a different kind of book. I wanted to use all the family history I’ve been doing to explore the title of a song I heard whilst I was sitting in the waiting room on the day of my syscospoy – How Did I Get To Be Me? It may sound a rather self indulgent project but it got my juices flowing. Needless to say, I can find any excuse not to start writing and I didn’t really get going until October. I’ve become fascinated by the process of writing something that is a mixture of fact and fiction and leaving modesty aside, I think it’s going to be a Corker of a book.

I’d been wrestling with the idea of how to present the book and a couple of weeks ago I had a dream. In the dream I was in training for the 400 metre hurdles at the Olympics. The training was a relentless series of short sprints over 6 hurdles. My coach was Charles Dickens. After training, I went for a shower and all that came out of the shower head were tons of Rice Krispies. I like dreams that take the piss out of the dreamer. It was a cereal. Like Dickens used to publish his work in serial form.

So that’s what I’ve been working on. I’ve done the first four chapters which cover the time my Uncle Bob won a camper van on Sale of the Century, the first time I saw David Copperfield in my GP’s private library when I was 8 and my encounter with my great great grandfather William Worley in Shoalstone open air pool. I like the idea of meeting these historical family figures by either stepping back to their time or by them appearing in 2019. I’m currently working on the chapter where I find myself playing football with my 2 year old, toddler father. From January, I hope to publish one chapter per week on this blog. Sign up now if you want to learn what happens when Steven meets Cobra and Jet at a motorway service station.

Back in 2009, there were times when it felt like we might spiritually die with the sheer bleakness of our situation. Earlier this year, I had to get my head round the possibility that the cancer might have finished me off. Neither happened and I’m mighty glad to still be alive. I don’t think I’ll return to social media permanently because I like the feeling of being alive. I just want to tell new stories, not a regurgitation of something that happened a decade ago.

Who’s coming with me?

Promises

On yesterday’s compilation tape, Steven chose to include Promises by Take That. Bear with me. It is relevant.

Matt Hancock has been all over the airwaves all  week, promising this, that and the other. On Tuesday, he combined two promises. He promised the introduction of mandatory autism training across the NHS. This is a topic that has received a lot of publicity through the relentless campaigning of Paula McGowan after her son Oliver died a shocking, needless death. Hancock combined this promise with another,  more generic promise about a few things that may benefit the thousands of people currently detained in in patient services. This included the setting up of a group led by Baroness Hollins to review (in 6 months) the discharge plans for all people currently in segregation. There were other promises but they were so general, that five days on I’ve forgotten what they are. And I think that suited Hancock’s purpose superbly well. Promises of plans without people don’t stick. Talk about the number of beds doesn’t resonate but if we talk about Ahmed, Anne and Archie inside those beds, they might just capture the public’s attention and the pressure to do something ratches up. A bed, or 2500 beds doesn’t carry the same potential for an empathic response.

Yesterday, Hancock crossed a line. He appeared on Sky News not to talk about beds, or training, or money. He talked about Beth. I’ve written about Beth before and through a number of media stories, she is certainly in the public consciousness. Hancock apologised to Beth and her family for her continued detention in segregation. He also announced that plans are in hand to have Beth moved before Christmas. Beth’s father, Jez immediately came onto social media to state that this was the first he and Beth had heard about these plans. It was a truly shocking moment. Had Hancock just lied? It’s election time so we’re all drowning in the seas of lies but this was different. It was about a real person. Jez heard the promise. What if Beth heard the announcement? And believed it? It wasn’t a promise to move 150 nameless people. That sort of announcement evaporates into the ether like a ministerial fart. This was about Beth and we know her. Once promised, it won’t be forgotten and it definitely can’t be backtracked on. That plunges us into deeper levels of cruelty.

It also exposes the terrible conundrum of being a public story. As I argue above, there is something much more powerful about being a real person, a human being in media stories, in campaigning stories. But it also carries a terrible risk. Public property is precisely that. You are at the mercy of however everyone in the world wants to see and present your life. Your life, your future can be used by a minister for five minutes of electioneering. And whilst you’re mentally packing your suitcase and dreaming of your future life outside of segregation, the minister has moved on to his next photo opportunity with a group of cardiac patients in Bradford.

It happened to me and Steven back in 2013, albeit in much less serious surroundings. We had been made homeless and after I blogged about it, I was invited onto the Gaby Roslin show to talk about it. About 5 minutes into the interview, the director of housing and social care came on the line and publicly promised that the matter would be sorted within 14 days. She was lying of course. It took another 9 months of unbearable stress before Steven got a new home. But both me and Steven heard that promise. I ordered some new pots and pans and Steven started planning for his Saturday compilation tapes in his “new forever home”.

When Steven was 5 and he first heard Promises by Take That, he couldn’t say the word, promises. He used to say “prarmshashitties”.

It’s quite apt. Mr Hancock – don’t be a prarmshashitty. Please.

Campaign Trials

Twice recently I’ve been asked to come up with a profile of myself for events I’ve been invited to. Whilst I was umming and arring over what to write, it was suggested that the word “campaigner” be mentioned. On both occasions I winced. I wasn’t sure why that adjective should make me uncomfortable.

A few years ago I was asked to run a small, monthly supervision group for 4 workers of a charity that would have considered itself a campaigning charity. It had nothing to do with learning disabilities. I thought it was remarkable that a charity would think it important for its hands on staff to have a therapeutic space to reflect on their practice. I suspect it was a very rare occurrence. We met once a month for about 18 months and the majority of our time was spent exploring the shadow side of campaigning work. Full credit to the 4 workers for opening themselves up. We reflected on the dangers of ego, the less pure motives of campaigning, the competitiveness that can arise amongst campaigners. It was all grist to the mill and I like to think the workers were better campaigners for putting their psychological arses on the line. I tried to do the same during Get Steven Home, 7 Days of Action and Rightful Lives. My clinical counselling supervisor was incredibly tolerant of the many times during supervision, I tried to work on how my shadow was at play during those aforementioned campaigns.

My memories of the supervision group came back to me yesterday as I watched the social media reaction to Ian Birrell’s latest article about Matt Hancock’s response to the increasing pressure to get off his backside and do something about the ATU scandal. My initial reaction to Ian’s piece was cautious hopefulness. Of course it could all be an electioneering con. That was a view several people took. But it might not be. Years and years of campaigning might finally be paying off. There were certainly some statements from Hancock that I’ve never heard from a minister before. The best we can claim is that something positive might come from this latest twist in the story. Ian’s story also prompted those two themes from the supervision group: ego and competitiveness. Some people over claiming the part they may have played in the ATU campaign. Who has contributed more? Who has been on the campaigning scene the longest?

Has anyone ever come across Charles Bingler? I suspect not many. I’ve been reading a lot about institutions for my next book and stumbled across Charles a few weeks ago. Charles Bingler was born in 1861 and his early medical notes show that he was diagnosed as “an idiot”, the brutal term of that time to denote a learning disability. Charles lived at home with his parents and elder brother until he was 11 and then in 1872 his parents allowed themselves to be persuaded that the best place for Charles was an institution and he was duly packed off to a place in the Midlands that was home for over 500 idiots. His mother killed herself and his father died a couple of years later, leaving his brother Ernest as Charles’ only relative and advocate. Ernest was allowed to visit Charles once a month and they would go to a nearby farm for the couple of hours they had “accessing the community”. Over time, Ernest started to question why Charles needed to be in the institution. Charles came alive at the farm and Ernest was convinced that Charles could live outside of the institution, possibly even working on the farm. Ernest started his campaign to get Charles out. He lobbied the Farm owners and local dignitaries. He had a couple of letters published in his local paper. In 1878, he travelled to parliament in the hope of…. who knows? In 1880, Ernest unexpectedly died at the age of 24 and the story ends. Although it didn’t end because Charles continued living. The story goes cold because there was nobody left to campaign for Charles, so I guess it’s reasonable to assume that Charles remained in the institution until he died.

I think campaigners need to show a little humility. We need to recognise that we are a very small cog in a long standing wheel. If Matt Hancock finally pulls his finger out and we reach a time where people with learning disabilities aren’t consigned to a life in an institution, then Charles and Ernest Bingler would have played a part in that success as much as anyone being interviewed by Radio 4 in 2019. If you’ve ever retweeted a story about St Andrew’s, or sent your artwork to the Rightful Lives exhibition, or you’ve stood in the pissing rain outside the Department of Health, you’ve contributed something valuable. And there is no hierarchy of value.

And Charles Bingler’s life might have meant something.

Deputy Dogging

I received an email earlier in relation to Steven’s deputyship. These are the first four paragraphs:

“You’re getting a refund of some of the deputyship fees paid on behalf of Steven Neary.

The Ministry of Justice (MOJ) carried out a review and found that it set some deputyship fees too high between 1 April 2008 and 31 March 2015.

The fees charged did not match how much it cost the Office of the Public Guardian to supervise deputyships during this time. This is because it was difficult to predict costs as the number of deputyships rose faster than we expected.

We have improved the support and supervision of deputies and we continue to review our fees. We’ve now taken steps to refund all clients who paid too much.”

So. I’m delighted to get a refund. It will pay for Christmas. But it sticks in the throat slightly that this overcharging went on for 7 years. And it only came to light after an independent review into their charging practices. Their excuse about finding it “difficult to predict costs” is incredibly weak too. I’m not going to disclose the actual amount but their predictions were way off. To get an idea of how way off, imagine being charged £68.95p for a banana longboat in your local Wimpey Bar.

During those 7 years, I’ve been on the receiving end of the OPG’s inbuilt operating position that families tend to rip off their incapacitated relatives. Do you remember the dispute over the frozen peas and toilet rolls? Back when I was living with Steven 24/7 and used to do a combined weekly shop, it was queried how I seperate my purchases from his and how I should split the purchase of goods that we both use (i.e. frozen peas). Then there was the time I felt under dreadful pressure because I couldn’t find the receipt for The Proclaimers greatest hits CD and the OPG wanted me to account for the grand sum of £8.99.

I also recall being invited to speak at the Court of Protection annual conference. I followed the head of the financial deputyship department who spent her full hour sneeringly telling story after story of families financially abusing their relatives. No apologies for name dropping but Justice Mumby and I had a nice conversation over the Hob Nobs expressing our disquiet over the tone of her presentation. I hope that today, that manager feels gently hoisted by her own petard.

The scars of those experiences can still be raw to the touch. I’ve just ordered some new floor covering for Steven’s kitchen. Unlike the old frozen peas days, it is his home, his kitchen floor. I walk on it a lot less than he does. However, nervous of a beady eyed OPG official scrutinising Steven’s accounts next March, I’ve paid for 1/3rd of the lino. And one of the support workers has offered to lay it so Steven doesn’t have to pay fitting charges. Our actions are partly out of love and partly out of fear.

Families of disabled people. A different species. Can’t trust ’em as far as you can throw ’em.