My friend came to stay last night. We went out for dinner at my favourite eatery by the marina. When we arrived, it was obvious that the restaurant was preparing itself for a do. The waiter told us they were having a 90s night. By the time we’d finished the main course, the place was filling up, so we took our coffees outside and watched the barges, escaping Ebeneezer Goode by the skin of our teeth.
When we got back, we watched the news and they had an interview with Gina Murray, the woman who has brought the Article 50 case to the Supreme Court. It was a longish interview but focused entirely on the level of abuse Ms Murray has received since challenging the government. True, the abuse has been awful but what was difficult to fathom was the outraged shock. Whether you’re in the remain camp or the leave camp, it’s a pretty incredible achievement to take the government of the day to the highest court in the land but here was an interview with the sole purpose of presenting Ms Murray as a victim. And she seemed happy to go along with it. What is that all about? My friend has a theory that I totally go along with and its about the 21st century way of enslavement. It follows three steps:
Step One. Be framed and identify oneself principally as a consumer. Embrace your world of the market place. Believe in the idea that you have choice and independence.
Step Two. Foster a sense of entitlement and expectation. If I want it, I can have it. And someone has to deliver what I want. My needs and desires are paramount.
Step Three. When step two doesn’t happen, react with outrage and rage. Victimhood carries a certain nobility and the outraged victim is a badge to be worn with distinction. It takes us back to the start of the circle because nobody can be experiencing victimhood worse than me.
The trap door closes. We’re stuck in this cycle forever. The BBC used an outraged shock over the inevitable online abuse to award Ms Murray her victimhood medal and she was complicit in her own enslavement.
We all are. How many times have you heard me go on about the fact that services in social care don’t exist anymore? Endlessly! Intellectually and rationally, I know that to be true. But inside another part of me, my expectation of a service and my sense of entitlement as a consumer of that service, refuses to accept that truth. Last night my friend had to help me with a debrief of yesterday’s encounter with the council. It’s too long and boring to go into detail but it was about the damp problem in Steven’s bedroom. In the 35 minutes it took waiting to speak to somebody, I worked myself into victimhood. I felt shaky, I started having fantasy arguments. I even felt a little teary. Needless to say, I didn’t get the matter resolved to my satisfaction. How could it? Services are dead. And it will continue until millions of voices sing that the king hasn’t got any clothes on. And then it’ll get really messy.
I was going to end this post there but the postman has just been. He delivered a card from the Royal Mail offering me several new choices on how to receive my mail. I can determine a specific day and time for all my mail to be delivered en masse. I can choose a delivery destination that best suits me. I can even chose a collection point for a formal handover of my mail. Choice is everything. I am everything. I will get a much better service.
I don’t fucking care. Just deliver my fucking mail whenever you like.
And there you have Steps one to three in a nutshell. Or a nutcase.
When I started investigating my family tree last week, I was doing it purely for me and trying to solve some of the family mysteries that have rattled away in my brain for years. I hadnt considered the impact it would have on Steven. To say he’s even more excited than me is the understatement of the year.
Steven is interested in people. He also loves stories. Put the two together, especially when it involves people he knows and he can find a hook, and he is in seventh heaven.
By Sunday morning, I’d reached the family layer of my great grandparents. The tree template allows you to upload photos of the people you discover. I don’t have many photos from my parent’s generation – the two main photos I have are the group photo from my wedding and the same from my parent’s wedding. I enlisted the help of the support worker to take zoom shots of the many heads from these photos and once uploaded, I did crop jobs so they would all fit into the profile picture spaces. I like the end result, although the randomness of the photos plays havoc with the visual timeline. For example, the photo I have of my cousin was taken when she went to collect her MBE. She was in her early 60s. Yet the photo of her dad, my Uncle Albert, was taken during the war and he is probably in his late 20s.
Come Sunday evening and Steven wanted to see what I’d been up to. He was instantly hooked. Each photo and story eliciting yelps of excitement. It’s always fascinating watching Steven store stuff on his internal hard drive. He has a look of intense concentration and the odd jerky head movement, which I take to be him filing the information in its rightful place. The look is the same when he’s trying to retrieve something from the hard drive. The 8th hit of The Pet Shop Boys is readily retrievable but locating the name of the keyboard player from Martha & The Muffins may bring about a few jerks. At one point during the narration, Steven put his hand over my mouth. I guess I was going too fast for his download programme.
Steven only needs to be told something once and it is set in stone, to be remembered forever. An hour of telling family stories on Sunday night and he’ll never forget them. Not being able to read or write, verbal stories are Steven’s preferred (only?) mechanism to be part of an historical story. His inner library is vast. The Bodleian stored inside a blue sweatshirt.
Each night since Sunday, I’ve heard Steven rabbeting away to himself in bed for hours. “Mark Neary’s dad is called Grandad John. Grandad John worked with big dogs. Grandad John’s brother’s name was Stanley. Uncle Stanley went on an aeroplane to Australia and never came back to Southall”. I told him that story just the once. Similarly, ” Mark Neary’s mummy was Nanny Beryl. Nanny Beryl’s brother was called Uncle Charlie. Uncle Charlie had a bacon and sausage shop in Southall. Then a new man came to the shop and Uncle Charlie drove massive lorries”. Although it may sound, and may transpire, that after one hearing, Steven will just tell these stories by rote, I can tell they have done something to him. Whether it’s about belonging, whether it’s about connection, I’m not so sure. Maybe it’s because they just strike him as dead good yarns.
In the final episode of Roots, Alex Haley went back to the village of Kunta Kinte. Seven generations had passed. Whilst there, he met the local griot. A griot is a tribal, oral historian. After listening for hours, Haley was finally reunited, 200 years later, with his great great great grandfather. No written records. Simply the oral narrative of an elderly man.
That’s how Steven does it. He’s the griot of Cowley.
18 years ago, the seed of a question was planted in my brain. I haven’t done anything since to cultivate the seed but it has never gone away. I was at the funeral of my Dad’s last surviving sister. All through my growing up, I was of the belief that my Dad had two brothers – one had died quite young and the other had emigrated to New Zealand, shortly before I was born. At the funeral, one of my cousins mentioned that Dad had three brothers and implied that the one I’d never heard about had a learning disability of some kind. My cousin also has a disability and his speech isn’t always easy to follow but he mentioned cryptically about the brother who “stayed in nanny’s living room all the time and the door was locked”.
It was shocking and not shocking at the same time. I knew that attitudes to disability were dreadful back then. In fact, the cousin who told me the story is deaf and from the ages of 6 to 16 was sent away to a residential boarding school in Margate. It was the done thing. Although his mother was a very feisty woman, I can understand that she wouldn’t have dreamt of challenging the professionals who decided that was the right course of action. There seemed to be so much shame attached to learning disability back then. Hence, my possible uncle being locked away in the front parlour. I guess the shocking thing was that I didn’t know. All families have their secrets but those secrets are normally known within the family. Was the fact that I wasn’t told, some indicator of the deep level of shame felt? It was, and is, hard to make sense of. My family were generally kind, tolerant people. But like a lot of working class people of their generation, they knew their place. I remember the acute embarrassment at one of my school plays (I was probably about 10) when my auntie curtseyed to the lady mayoress. My family could stand their ground with the neighbours, their work colleagues, even each other but there was a whole class of people that they would doff their caps to.
On Friday morning, one of my clients cancelled and whilst channel hopping, I found myself gripped by an old episode of Who Do You Think You Are. It was Gary Linekar. Later that afternoon, after seeing my last client, I suddenly found myself signing up to ancestry.co.uk. I didn’t get off it until the battery on my tablet ran out at 11pm. But by that time, I had discovered five generations of my family. I was hooked. I will now need to look for a new support group to join.
My Dad did indeed have three brothers. One died in 1952, aged 40. Another, the best man at my dad’s wedding emigrated in 1956 and I even found the flight records for his journey to Sydney. So, who is Frank? He was born in 1917, so was 10 years older than my Dad. He is in all the electoral rolls from the time he became an adult but suddenly disappears in the mid fifties. I suppose he might have died too but I can’t trace any record of his death. Also, if he did disappear or die in the mid fifties then my cousin wouldn’t have encountered him. I’m not sure where to go from here. I wonder whether he was packed off to an institution somewhere. His father, my grandfather, was approaching his 80s and may have been struggling to cope. That’s the trouble with looking up your roots – you end up speculating like there’s no tomorrow.
I did wonder for a while whether learning disabled people are missed off the census/electoral roll altogether. From what I can gather, details of disability are only released 100 years after the census. I’ve been looking at the 1911 census information and discovered that the disability column was only open to the public from 2012, whilst all the other details have been in the public domain for much longer. Back in 1911, you had a choice of five “infirmities” – blind, deaf, lunatic, imbecile or feeble minded. It made my blood run cold to imagine what group, if Steven had been around 100 years ago, he would have been slotted into. I’m not totally sure what each of those categories mean but they must have been common expressions because there is no explanation on the census document to help the person out. Obviously, 1911 is six years before Uncle Frank was born, so he arrived too late for that classification. I may have to wait until 2022, when the 1921 census will be released.
Other people’s family trees can be incredibly boring, so I won’t labour the point. I did find a couple of heart warming things though. My maternal great grandmother, widowed by the time she was 35 and with 6 children to raise, became a pub landlady in Paddington. The pub, The Swan, still exists, but I bet it was a much more spit and sawdust affair back in the 1920s. On my maternal father’s side, they seemed to do quite a bit of farming. In Kensington! I like to imagine them tilling the soil pre Harrods. And making me jump out of my skin, other people are also researching my family tree too. They must be very distant relatives. But there I was, checking out the “hints” for my dad’s siblings and up popped a photo of a loved up Auntie Binnie and Uncle Arthur in Southall Recreation Ground.
I’ve started now – so I’ll finish.
I want to do the right thing by Uncle Frank.
Yesterday I attended the Learning Disability Today conference in London. It was very well attended, had some excellent speakers and tried to tackle the big subjects in the learning disability world.
So why did I feel more and more uneasy as the day wore on? With a handful of notable exceptions, most of the speakers didn’t have a learning disability. Most of the messages were along the lines of, “Things are really shite but we have to keep fighting”. Co-production was very popular but it was fundamentally about what can we do for you. It was, where are we, five years on for Winterbourne View?
Sorry if it appears like I’m always knocking them but Mencap had a stall amongst the exhibitors. A few people with downs were wandering around, wearing t shirts with ” Here I Am” emblazoned on them. It smacked of dressed up dolls. Surely the fact that the people were there said Here I Am. It didn’t need the rather patronising costume.
But it focused my unease because in spite of the good intentions, for the vast majority of learning disabled people, their t shirt would have read “I’m Not Here”.
I was asked to speak in a panel session about our experiences of having a personal budget. I was acutely aware as I spoke that I was presenting a narrative purely from my perspective. Nothing to do with Steven who I don’t think has a view on personal budgets. The budget is a pain in the are for me but its not for Steven. In fairness, I was making the point about the inaccessibility of personal budgets but it was about me. When I sat back down, I realised that for Steven, the conference was inaccessible too. The train journey would have triggered a meltdown before he’d arrived. The huge crowd at the venue would have brought about a sensory overload. Steven prefers talking to listening but he would have had nothing to say. He wouldn’t be joining the call to ” give us a voice”.
In a way that’s okay. Its not his arena. He can claim “Here I Am” in other places. So possibly, my unease is all about me?
I bumped into Mark Brown and we bunked off to the bar at the adjacent hotel and played with the idea of an alternative learning disability conference where Steven and his peers could have a voice.
Without a T shirt.
I’m still whirling after a series of brief encounters. I do believe in the phrase, “If you build it, he will come”. I just didn’t expect so many people to come.
As regular readers will know I’ve been involved in the 7 Days of Action campaign. So far, we have run two campaigns – in April and October. It is probably fair to say that the October campaign didn’t have the same level of impact as the first campaign. The campaign steering group discussed ideas for the next campaign and I threw my hat into the ring and suggested a play.
The idea of the play is to write a play in the form of a single character monologue. The play will have seven scenes and will be recorded and released as seven podcasts over the seven days of the 2017 campaign. I’ve written the first draft of the play and we have actors lined up to play the two central characters. Although it is a fiction, the main character’s story is a familiar one because it draws on several experiences of people who contacted the campaign with loved ones in ATUs. Quite a few people have read the first draft and have given some fantastic critical feedback which will feed into the second draft which I’ll get cracking on next week. It is going to happen.
On Thursday I travelled up to Birmingham to speak at a BIA’s training event. I love this gig, which I’ve been doing twice a year for the past four years. Wendy, the trainer, is cracking company and the audience are always warm and receptive. Wendy always lines up some impressive other speakers and I always come away having learned a lot.
Over dinner on Thursday, I told Wendy about the play and she was dead excited. For some time now, Wendy and her co-trainer, Ming, have been exploring the idea of a play that is the same story but presented from several different perspectives. Their original thought was to take one of the landmark Court of Protection cases and write a play based on the different people involved in the case. It would include a scene narrated by the person detained; another featuring a family member, another from the social worker’s perspective. Possibly a scene written by the BIA and a scene by one of the legal people involved in the case. I thought this was a fabulous idea and asked to take part – I could write family member’s story.
The other speaker at the event was Judge Eldergill. He was the Judge at the centre of the landmark Manuella Sykes case and he contributed to a drama that Radio 4 produced about the case. During the break, we talked to the Judge about the idea of the play and he said he was very interested in writing a scene from the Judge’s perspective. Can you believe that? A chance encounter whilst having a smoke and a High Court Judge comes on board. Ming also arrived and she would be the obvious person to write either the social worker or the BIA scene.
I think there are two plays here.
If anyone is interested in being involved, please drop me a line. There are lots of people involved in Court of Protection cases and to have as many different perspectives in the play as possible would undoubtedly add to the drama. First and foremost, we need someone to write the central character – the person detained. But other roles, IMCAs, solicitors, staff in the ATU will all have something valuable to give the project.
Let’s get this show on the road……..
I’m looking for investors. I need community Partners. I’m going for co-production in a big way. I want to build five developments totalling 100 living units for people with challenging behaviour and complex needs. Nice curved walls. Welcoming communal spaces. Probably positioned near to (or inside) the industrial estate.
I encountered two of my target group yesterday whilst I was accessing the community. There was the woman who stopped dead in her tracks as she got off the bus to read her Facebook messages, causing a pile up behind her. We had nowhere to escape, the driver shut the door and we were driven off to the next stop. Half an hour later, another woman did exactly the same thing as she got off the escalator in Tesco. She was plugged in, so she didn’t hear my plea of “mind out of the way please” leaving me no alternative than to drive my trolley straight into her.
These people have extremely complex needs. Unfortunately, due to their condition, they are unable to show empathy so it was my fault that I ran into the woman on the escalator. These people don’t feel empathy but my goodness, they don’t half feel outrage. (Note to self – must build sensory room in living units). The woman on the bus had absolutely no idea that the five people behind her missed their stop. She had something important to do and it had to be done NOW. This is extremely challenging behaviour that requires a good deal of multi disciplinary input.
But it is important that we encourage these people’s independence whilst acknowledging the risk they pose to the rest of society. Independent studio flats will enable the privacy to text away to their hearts content, whilst the communal spaces will encourage the learning that the world doesn’t revolve around them. (Note to self – must engage an on site positive behaviour support team).
It’s been a bad week for Transforming Care. St Andrews, which already has over 1000 beds is opening another 110 bed ward in January to gobble up another cohort of learning disabled people. Up in Northumberland, a 100 unit Unit is being built, specifically for people with autism and challenging behaviour. The publicity for the place stresses that it will be a place “for people currently in less appropriate settings”. It will be built across the road from a step down unit so presumably this is a step down unit before you go to the step down unit. Then yesterday, the Clan field Post announced the building of 100 one bedroom/studio living units spread over five sites in Hampshire for people with complex needs. A care home with 100 front doors. 63 units have already been planned on four sites, with presumably, the other 37 being built at the development in Winchester.
Complex needs are in the eye of the bebolder. One man’s challenging behaviour is another man’s completely authentic expression. I wouldn’t trust a single one of the groups usually tasked with diagnosing challenging behaviour. The property developers need the label to generate big bucks. The therapists need the label to trumpet their model. The charities need the label to justify their existence. The industry needs the label for the industry to grow. Wouldn’t it be interesting if the world woke up one day and the whole construct of challenging behaviour was about people who text in public spaces? The industry would remain the same but have a completely new target group.
One thing these places have in common is they never mention a home, a house. People with ” complex needs” have to be painted as such so as to scare off the locals and justify the development. Heaven forbid, a person with autism lived in a normal road with non autistic neighbours. The industry is built on such a fragile illusion, that to call somewhere a home, might cause the entire industry to crumble.
Excuse me but I need to get back to work. I was just taking a break whilst the cement was setting on the 80 bed unit I’m currently building for complex diabetics.
I’m not sure if this post is a self indulgent, self absorbed pile of shite or further evidence of the underhand ruthlessness of Local Authorities in ripping their disabled residents off.
One thing it does show (sadly) is that my transition from Dad to Project Manager is complete.
It’s 1.15 and I’ve been on the phone to various council departments since 11.30. I’ve got two more calls still to do. I went back to Steven’s first thing this morning to sort him out for my absence the rest of the day. If I’d stayed, I wouldn’t have had the time to make those calls, so decided to pay the support worker to cover the three hours this afternoon. Steven is bemused and still trying to work out what is going on. I sorted out the CDs, so the support worker can do the Wednesday disco tape instead of me. “Dad doesn’t do Tuesday tape anymore. Dad’s not Steven Neary’s Tuesday friend anymore”. He’s half right. I think I’ve only done the Tuesday tape twice since we got the keys to the new house. Quality, shared time sacrificed for the pleasure of bureaucratic personalisation. Whilst I was there, I did the support workers’ wages. I’ve queued them up until the end of December so at least I can be spared that job throughout Christmas. There’s still the November Personal Budget audit forms to do but I didn’t have the stamina for that today.
Back at my flat, the first call was to the Council Tax department. Despite getting Council Tax Benefit, Steven has received a bill for £80.55 to the end of the year. This struck me as odd because I’d paid his council tax on the old house until the end of the financial year and the banding on the new house is lower. If anything, he should be in credit. At first, the guy said he was unable to check the account on the old house but later confirmed that the credit had been transfered to the new address. So, what is this £80.55, I kept asking. Eventually, he is forced to admit to the big rip off. Steven is not getting the disabled discount at his new address. Their policy is, when someone moves, the disability marker is set to zero and the person has to reapply for the discount. Only, they don’t tell people. They just send you a bill for the full non discounted charge.
This isn’t a mistake or incompetence. This is a committee approved policy. A policy designed to get money out of disabled people when they really should be helped via the discount scheme. Hillingdon has form on this. Exactly the same thing happened back in April when Steven suddenly received a large bill for his care charges for 2016/17. The previous two years of receiving a personal budget, he wasn’t charged at all. After much stress and deep digging, it turned out that the council had a policy that at the start of each financial year, they reset the amount of disability related expenditure a person has to zero. Expenditure ignored, they are free to bump up the charges people are expected to contribute towards “care services”. But they don’t tell people. They just send out a bill and hope that people aren’t inquisitive or suitably threatened and pay up.
This is two different departments, the council tax department and the social care department. It suggests that a committee must have looked across the board at ways of ripping disabled people off. From every department the disabled person has to have contact with. I don’t know about you, but that is so ethically and morally bankrupt, it is shameful.
I could have been too busy, or too tired, or not alert enough and just paid up. I suspect hundreds of ratepayers do because they don’t know any different. Ironically, having finally got the council tax bloke to acknowledge the scam, sorting it out sounds reasonably straightforward. Steven doesn’t have to reapply for the disabled discount. And rather than owing £80.55, he is probably due a refund.
What do you do? If I was still just ” Dad” and got on with bopping away with Steven to a soundtrack of UB40 today, this would never have come to light and gotten sorted. Fun and loving engagement had to give way to project management.
Its not over. We normally watch Gladiators together after taping. It’s the 1993 semi final today and Helen Williams hurting her back after falling from Hang Tough. But I’ve had to pass that over to Des as I’ve still got the best part of two hours phone calls to do – the tenancy appeal, the damp and why Steven has an odd additional charge on his rent account.
Dad can’t sort that. Mr Project Manager might.