Going Round In Circles

I was in Birmingham last week for the last leg of the Get Steven Home autumn tour. The gig was organised by the splendid Wendy. I can best describe Wendy by quoting my Auntie Wilky – “Goodness me. That girl’s got some vim”.

We were both staying at the same accommodation and I met Wendy in reception about 5 o’clock. Demonstrating her vim, she announced: ” I’ve got a good surprise for you. I thought we’d eat early and then I’ll take you dancing”. I can’t remember the last time I went dancing. “Erm – dancing?” “Yes. I went last week. It’s in the Selly Oak community centre. It’s circle dancing”.

Circle dancing? I suppose I immediately thought of country dancing. I was very keen on country dancing at junior school. In fact, our class represented the school in a county competition and won the Amy Moulder Rose Bowl. The headmistress was rose bowled over. It was the first time the school had won the prestigious trophy since 1949. We were heroes of our times.

The following year, defending our trophy didn’t go too well. We had a mishap. My partner was one of my bestest friends, Sharon Martyn. Sharon towered over me, so it wasn’t always obvious who was leading who. We were doing the Dashing White Sergeant. My family used to chuckle as my Dad would say, ” Our Mark’s got a Dashing White Sergeant” and then laugh in a Dick Emery stylise. Anyway, this year’s competition was held in the open air. And as we were Dashing around the field, a disaster happened. Sharon’s plimsoll flew off and landed in the first row of the audience. Ever gallant, each time we hurtled pass, I bent down to try and retrieve the plimsoll. Unfortunately, the front row was occupied by the parents of our biggest rivals, Dormers Wells Lane, and as I tried to make a grab for the shoe, they’d kick it further away. The headmistress was furious with me. I don’t blame her. Even if I had managed to get hold of the plimsoll, we’d have to stop dead in our tracks whilst Sharon put it back on again. We finished 6th out of eight schools.

Anyway, back to Birmingham. There were about a dozen people in the class. I was the only man. The teacher was, to quote Auntie Wilky again, “a good age” – well into her eighties. The form, as I quickly discovered, was that she would tell a quick story about the origins of the dance, do a demonstration and then we would all join hands and off we go. I determined that if anyone’s plimsoll flew off, they could darned well fetch it themselves.

The first dance went okay. I thought I did okay. Jacquie introduced the second dance, directing most of her narration to me. “To get the most out of this dance, you must imagine yourself as  a Bulgarian peasant woman in the late 1800s”. I swear she winked at me. Off we went. At the end, she came over to me and said in a loud but gentle voice, ” It’s not too much of a problem that you’re doing different steps to everyone else Mark. However, it is important to be going in the same direction as everyone else”. Oh, how we laughed. I’m a good sport but it did slightly knock my confidence, so I started to become selective over my participation in the dances that followed. I did the Kurdish number but sat out the Polynesian one. By the way, I wonder whether Kurdish women in 2015 recreate the dances of 19th century women from Selly Oak.

We reached the end of the evening and started to pack up. There was time for one final humiliation. Jackie came over and tried to give me my entrance fee back – “You take it back Mark. It wasn’t really your cup of tea was it”. I protested that I’d had a great time (which was true) but she wouldn’t have it and I came away with an unexpected fiver.

If I’m invited back to the conference next year, you watch. I’ve already added ” circle dancing” to my list of YouTube favourites.



Armchair Theatre

I’ve been wondering for ages what it would take to bring about a wider public interest in the real lives of the learning disabled. Not a patronising Children in Need/Pride of Britain exposure. More a Ken Loach/Jimmy McGovern boot in the privates. A drama with a cast of thousands that includes the social workers, the health workers, the courts, the psychiatrist’s, the charities, the positive behaviour crowd, etc etc.

I’m old enough to remember when Cathy Come Home first aired. I remember lessons at school being cancelled to discuss issues the play raised. We talked about it at family get together. It was repeated yearly for several years after the initial transmission. Something changed in a big way. I don’t think that in 2015, with the schedules flooded with reality shows that a Cathy would even cause a ripple. Unless we could phone in and vote which of Cathy’s kids would be released from care. And win £25k in the bargain. Hearts and minds are very different to what they were in the Sixties.

On Friday, I spoke at a Best Interest Assessors event in Birmingham. The evening before, I had dinner with Wendy the BIA trainer. Like me, Wendy is a complete Court of Protection geek and over a simple meal, we talked about recent cases. I did the same event two years ago when Justice Baker was the main speaker. During the break, he told me he thought the Get Steven Home story was very filmatic. It was very funny seeing Wendy go all weak kneed over meeting her hero, Justice Baker, in a rather George Clooney fashion.

We talked how some judges like Justice Baker and Justice Peter Jackson are great writers. Real dramatists. Their judgments are fabulous page turners. They take you on a raw, brutal journey. Wendy told me how she had turned some judgments into “radio plays” for her students to wrestle with. I thought that was a great idea.

Later, in bed, I thought that some judgments could be presented in exactly the form they were written. A bit like Alan Bennett’s Talking Heads dramas. The legal arguments may need some editing but the cases are big stories. Always a matter of life and death. Always exploring major existential and philosophical issues. Always shocking and packed with emotion. Could it work? Six big cases given a series? Would it have any impact?

My fantasy is that they would start off like Bake Off. On a smaller channel with limited appeal. But then something would happen. And just possibly, hearts and minds might be engaged in a way that we thought had been lost forever.

Where is Dennis Potter when you need him.

There’s Always Something Or Other With Those Parents

There comes a point in the life of every professional, regardless of your profession, when a loud claim of outrage whilst lacking any insight or self reflection, will leave you hoisted by your own affront.

Have a read of this latest post from Sara Ryan and then tell me that particular Oxford CC commissioner hasn’t completely lost the plot – https://mydaftlife.wordpress.com/2015/11/23/the-birdseye-view-from-an-oxon-commissioner/

This is her “There’s always something or other with Mr Neary” moment, multiplied by 1000000.

So, why does this seem such a common reaction? How comes from writing about her truth in her blog, does Sara Ryan become the perpetrator of other people’s illnesses? By the way, I think we’re talking about Dr Crapshite here – a psychiatrist, who ought to be used to dealing with other people’s rages of life. They did the same with me. Whistler’s Mother became so distraught at the publicity our case was attracting, that she had to go off sick for several weeks. Funnily enough, her ill health meant she missed giving evidence in court about her actions throughout the year.

When you read that commissioner’s comments, you see instantly that she has no idea at all that she is writing about human beings. There is no sense that she sees LB as a person. She certainly doesn’t see Sara as a person. Both have to be turned into objects to satisfy the pain of a disrupted professional.

It’s all too easy to fall into a “my pain is greater than your pain” void here. There is no point comparing the staff who wept over the weekend with the lifetime of distress that the Ryan family will experience. But that is what, stupid statements like that attempt to do. Very much like KP’s “as a mother and a CEO” line. I used to run a therapy group that became unbearable in the “pain trumping” that went on. And worse still, the facilitators were encouraged to share their pain as well.

People should be allowed to experience their distress in their own unique, messy, raging/sobbing/silent way.

So people are objectified and our emotional experience also becomes a strange diluted, heavily filtered through the recipient’s own experience, mess. I blame the X Factor. Listen to the contestant saying “I’m going through this journey for my brother who was killed in a car crash the week before the auditions”. You can see on the faces of the other contestants, “Fuck! What do I say next”. So, you get, “I’m dedicating this song to my mother who is bravely fighting leukaemia in the hospice”. Desperately sad stories. But their presentation, whilst seemingly giving them powerful traction, actually reduces everything to an homogenised glob. Unfortunately, this is pretty endemic now in our way of living.

I dunno. I’m rambling. It’s very hard to make sense of turning a human being’s painful phenomenological experience of loss into a bureaucratic arm wrestling contest.

Everyone Plays Darts

The anniversaries come thick and fast at this time of the year. Just this week, yesterday was the first anniversary of getting the keys to my flat and five years ago today, I met Chris, our solicitor for the first time.

The past four weeks, I’ve been invited to speak at several conferences, so have been telling the Get Steven Home story over and over.

Am I over it? The thing I’ve noticed recently is that it feels a long time ago now. The anger isn’t so sharp. The unanswered questions don’t seem so important. The sadness doesn’t stop me dead in my tracks as it once did.

One thing that is still there, and seems to become more potent the more settled and less anxious Steven becomes, is the “what ifs”. And it’s always the same – what if we’d lost the case and Steven was still in a Welsh hospital five years on.

The 1970s band Darts are my fifth favourite band of all time. It’s cool that Steven has really got into them and we regularly watch a DVD of one of their later concerts. The other day, browsing Amazon, I came across a six CD box set of Darts, including masses of unreleased material. Steven’s favourite track from the concert has never been released before but is there on the new CD. What a great Christmas present (for him or me?) One thing that bothers Steven about the Darts CDs we already own is that none of them have a picture of Kenny Andrews on. ” Kenny doesn’t like his picture taken. He doesn’t want the batteries in his camera go bang”. So I can imagine the excitement on Christmas morning when not only will we see a photo of Kenny but we’ll be able to sing and dance to Let Rip With The Lip as well.

This is when the “what ifs” kick in. If Steven was in the hospital, would we be allowed to spend Christmas together? How would I get there on Christmas Day? Would we be supervised whilst listening to Darts? Would the memories of previous family Christmases at home get too much for either of us and ruin the day? The what ifs go on and on.

And then I remember that Steven is living in his own home and Christmas can be exactly as we want it to be. And then I snap out of it and the what ifs evaporate for another day.

And then I read Chris Hatton’s latest blog revealing the current LD in-patient statistics and know that for over 3000 people, my self indulgent what ifs are a terrible reality.

We Don’t Need No Transformation

Somebody asked me last week if I felt I’d achieved the aims of this blog and whether I forsaw a time when I’d no longer write it. It certainly got me thinking! The main reason I started the blog, completely selfishly, was because I enjoy writing. The other reason was that I was still hurting from the way Hillingdon presented Steven to the world during the court case. Even though I have no idea who the world is, I couldn’t bear the idea that the world would see such a negative, one dimensional picture of the great guy I share my life with.

So I determined to document all the other stuff that makes up our life. I know I’m biased but I wanted to show the unique, funny, imaginative, stoic chap that I encounter every day. I don’t think I’ve ever claimed to be painting a picture of the autistic – just a picture of a loving, quirky, messy life. Because the scars of 2010 run so very deep, I don’t think I’ll ever believe I’ve succeeded in that mission.

As we’re trapped in so many social care systems, I continue to despair about the consequences of that entrapment. There is so much that I consciously decide not to engage with in order to preserve my sanity. For example, I try to go nowhere near anything claiming to be about “transforming lives”. For starters transformation is a ludicrous, patronising claim. And it is ridiculously up its own arse as to suppose that people’s lives are so wretched, they need the input of a transformer to save them from their hellhole. Whenever, I read anything about transformation, it sounds like my idea of a hellhole.

Yesterday, I broke my rule and clicked on a link that took me to the latest NHS vanguard/schamguard/shitguard project. Led by the Chief Transformation Officer, it’s another ego driven ” let’s redesign care” concordat. Click on the link and have a look at their assembly of “experts”. See if you can make a word of sense of their ” Starter for 10″ challenge. (https://nhsiq.crowdicity.com/blogpost/160700) I don’t understand the language but then I would never be invited to be an expert in the kind of life that requires a utility belted transformer. One thing I do know is that what they describe is as about as far away from mine and Steven’s life as it is possible to get. Thankfully. Because Steven doesn’t want, or need his life transformed.

Over the past seven weeks, Steven has added a new element to his life. His life hasn’t been transformed but it has a new, interesting aspect to it. He has become a DJ. For those who have missed it, Steven is the now the host of the Steven Neary Massive Good Songs Radio Station. (https://stevennearysgoodmusicstation.wordpress.com/) It came about after lots of people expressed fascination over his musical taste after several stories I’ve told in this blog. It’s brought about a whole new routine. During the week, Steven will think of the 10 songs he wants to present. On Saturday afternoon, we’ll dig out the 10 songs on YouTube. After he’s gone to bed on Saturday, I write the links to the songs and try and match the songs with some of his favourite stories. On Sunday afternoon, I help him cut and paste the links from YouTube into his radio station blog. And on his way to the bathroom on Monday morning, he comes into my room and presses “publish”. Steven Neary is on air. Each programme is getting between 250/350 views.

It’s also brought about a new nighttime change. Steven keeps sending me off to bed before him. Then he has half an hour on the sofa with his IPad, going through his previous shows. I’m not sure what he’s experiencing in the moment. I’m pretty sure its not pride. He doesn’t really get the reach of his programme. I think he just likes all these favourite songs in the one place.

People build their own lives. They might need some support to do so. They don’t need the input of a transformation expert though.


Little Care Act Battles

On Thursday, I was invited to be part of a panel at the National IMCA Conference, discussing the implementation of the Care Act. To be honest, I wasn’t sure what I had to contribute but thought that, if asked, I could talk about my experience with the personal budget. Regular readers will know that Hillingdon have a blanket policy of issuing prepaid cards to all recipients of a personal budget. I found using the card incredibly cumbersome and time consuming and was able to use the Care Act to challenge the blanket policy. The Act states that service users must be given a choice of how they receive their personal budget and by quoting the relevant paragraph, I was able to get the LA to agree to pay the budget into a designated bank account instead.

Ironically, as I was leaving the house of Tuesday to travel up to Derby for the conference, the postman arrived. I should have left the letters until I returned but I didn’t. One of them was from Hillingdon, ticking me off for not including the bank statement with the October audit form. The letter contained the usual threats about non compliance could result in suspension of the budget and I’ve been given until Friday to supply them with the necessary documents. It was an oversight on my part and I’ll hand deliver the statements tomorrow afternoon during my respite afternoon. The bank statements will say exactly the same as the laborious audit form I have to complete – I copy the data from the bank statements onto the audit forms.

When I got to Derby, I spoke to some of the social care professionals about how they monitor their personal budgets. I was told that they would normally carry out an audit three months after the first payment of the PB and as long as that is okay, will then carry out an annual audit from that point on. That seems to be the common arrangement across the country. Except for Hillingdon and their micro management insists that the audit is done monthly.

Now, I’m aware that the Care Act states that the LA should avoid the administration of the Personal Budget becoming “onerous” for the carer. I think I would have a pretty strong argument to say that having to devote three hours every month to the task is “onerous”. If I was allowed to do it once a year it would cut down considerably on time, paperwork and the money I have to spend on all the paperwork they require.

But. I’ve learned since Steven was transitioned into adult services that you pick your battles wisely. To challenge the professional decision never goes down well, despite proclamations of candour and openness to the experts by experience. Challenge, in reality, is normally seen as an attack and defensive positions are taken. And no matter how much in the right you may be, there is normally a price to pay for challenging the professional view.

As I wrote about in the last blog, life in the social care system is always precarious and every learning disabled person is one intervention away from having their life turned upside down. Any success in achieving something even remotely resembling person centred care is momentary, before the next upheaval commences. Sometimes, you just have to let a challenge go, to safe yourself for a bigger challenge that is undoubtedly waiting around the corner.

So, I might just let the latest breach of the Care Act go and continue with the monthly “onerous” task. Because as sure as eggs are eggs, something as challenging will come along soon enough.

Dehydrated In Derby

I’ve spent the last few days in Derby. Yesterday, I was invited to tell the Get Steven Home story at the Derby Social Work conference and today, I was asked to be part of a Panel discussing the Care Act at the National IMCA conference. It’s been an interesting week.

Monday is my usual respite afternoon/night but I was prepared to give that up and spend the extra hours with Steven. No chance. As I’ve written before, routine is everything, so he kicked me out the door at 1.30 as usual, so he could get on with watching Unseen Bean with Chris. I stayed at the flat Monday night and set off for Derby the following lunchtime.

Is Derby expecting another Ice Age? My hotel room was like a sauna. The radiators weren’t on but within an hour I was saturated. I became so dehydrated that I thought I might be ill but checked with Jakki the conference organiser and her room was just as molten. Last night I went to bed about 10.30 but was wide awake and dripping again by 2am. The heat was unbearable so I threw a t shirt and shorts on and went outside for some fresh air. I got out alright but couldn’t get back into the hotel. I had to wait outside for over half an hour before the night Porter answered my frantic ringing of the doorbell. A Fred Flinstones moment.

Both the conferences went well. As usual, I had the thought that I’m just a “turn” but I think I’m a bloody good turn, so the thought didn’t last too long. Brilliantly, I got the chance to hear Wayne Martin from the Essex Autonomy Project speak again and I love him bringing philosophy into social care debates. Today, he talked about the idea of a “3rd liberty” and suggested that you don’t really have liberty when it could all be gone in an instant at the hands of someone more powerful than you. It certainly resonated with me and I’m sure with a lot of disabled people and their families. I chipped in and said that as we speak, Steven would be at his water aerobics group. He is very much the author of his life in choosing to go there. But I am acutely aware that a change of care manager, a reduction in the funding of his personal budget, a risk adverse social care psychologist and it could all end overnight. In one bureaucratic swoop, Steven could go from writing his autobiography to having someone who doesn’t even know him, write his biography. I agree with Professor Martin – a liberty that is as precarious as that isn’t really a liberty. As awesome as Wayne is, I fear that the social care world had made such a pigs ear of the legal aspect of deprivation of liberty, they are in no fit state to bring a philosophical discussion into the mix. Even though, it’s desperately needed.

I got home at 8.30 and Steven had just put on his 3 hour video “The 50 Greatest Musicals”. He always goes for a crafty epic video when I’m out to ensure he’s still up when I get home. So after three days away and admiring his new haircut, we’ve spent the last hour discussing Topol’s beard, whether the Blood Brothers need a plaster and what shampoo you use to wash a man right out of your hair.

It’s been quite a day. Discussions on Topol’s beard and liberty. In fact, for Steven, discussions on Topol’s beard IS liberty.