I’ve been feeling quite melancholic for a few days. Don’t worry – it’s a familiar, usually comfortable state for me. I think it’s been triggered by Steven’s new house. There is something about the house and particularly the surrounding area that looks and smells and feels very much like the 1970s. Being the decade of my teenage, any reminder is likely to plunge me back to The Sweet and later, Harringtons and two tone trousers. The shops across the road which are now a newsagent, off license, hairdressers and kebab shop would have been a butchers, bakers, greengrocers and newsagent back in the 70s. The living room we sit in reminds me of all those front rooms we visited in the 70s during our family Sunday afternoon visits.
I’ve never revisited the 1970s so strongly before through a home and location. Our first house when we married was a new build and very much of that Brookside Close style popular in the early 1980s. We stayed there 26 years until Steven and I moved to the Uxbridge flat in 2009. The flat had no character whatsoever but it became a dark place after the detention of 2010 and it was a blessing to get away. Then we had the temporary Cowley house for the past three years. The whole estate was built in the 1940s to house American airmen and their families. Whilst we were there, I would often glimpse the ghosts of a young GI and his beautiful bride, dancing to a Glenn Miller song, whilst tidying the pantry. But the 1940s was before my time, so the building and ghosts never had a personal resonance. The new house is different. I get the references. On one of the shed walls there’s the message, “Sandra loves Kevin”, two 1970s names, straight from my school register.
Yesterday, I whizzed forward a decade. One of the great joys of working from my own flat is when a client unexpectedly cancels their session, I’ve got plenty to be getting on with. Yesterday, two clients back to back cancelled, so I watched the film ” Pride”. 1984 – the miners strike, AIDs, Two Tribes. I went on a couple of Red Wedge marches, mainly because of The Style Council but the whole idea of a group like LGSM coming together to support the miners seems almost dinosaur like in 2016. More ghosts.
To top it off, I went to bed early and watched some Alan Bennett interviews on YouTube. In one, he discussed the TV series, 7 Up. This is the Michael Apted series where he revisits the same people every seven years. It started when the kids were 7 back in the 1960s and the last show saw them at 56. Bennett talked about one participant who at 7 wanted to be an astronaut but by his mid 30s, he was homeless and had mental health problems. Bennett commented that his unfulfilled hopes made for a desperately sad story but in typical Bennett style, he flipped it over and said there was also something sad about those participants who had fulfilled their hopes. I think he was referring to time. Fulfilling or not fulfilling dreams normally happens over a period of time. And the longer that time takes, the sadder the move from innocent dreaming to realisation or non realisation can seem. Nowadays, we tritely talk about “journeys” but feeling your timeline from 7 to 56, really feeling it, can be very powerful.
I guess that’s why I didn’t feel a sense of achievement finally getting Steven’s house habitable. The journey has been too long. The photo albums have become too packed. There may have been too many ghosts helping with the decorating. This strong sense of the 1970s I’ve been feeling may be because this adventure of getting Steven a home, started for me back in the 1970s.
I wrote in the last blog post that I suspect that Steven is on the verge of a major developmental shift. I think I am too. We experience that precipice moment differently, that’s all. In my psyche, before a big change, I tend to jump into a time machine. To re-engage with my story. To talk to the ghosts. To eat one last Arctic roll from the Hostess trolley.
I have no fears that I will stay in the 1970s. It no longer fits. But I know that the 1970s stay in me. It couldn’t be any other way. And that’s alright.
Last Tuesday night, an employee of Network Rail, whilst working on the new Elizabeth Line at West Drayton station, drilled through the main communication cable for this part of the borough. Immediately, Cowley, West Drayton & Uxbridge fell into a communications void. No phone signals, no internet connections for six days. And counting. My line was reconnected at the flat this afternoon but Steven’s house and other parts of Cowley are still silent. We’ve become a town that doesn’t know if it’s coming or going. Argos hasn’t been able to open for six days. Tesco let me have a single onion for free because they couldn’t weigh it. I waited in a cab for 10 minutes whilst they tried to work out the cost of my fare manually. We’ve had to relearn things we stopped doing 20 years ago.
As expected these days, Network Rail’s statement said more about its reputation management & fear of litigation than reassuring the 15000 homes and businesses incommunicado. “The cable wasn’t featured in our thorough survey of the area”. How could a survey miss the main cable? As we have become reliant on the internet, so we can rely on any company up shit Creek to issue a ” Not my fault guv” statement.
So, what’s a man to do when he can neither tweet, blog or wrestle with an online jigsaw? I filled my time with updating my list of my 500 favourite singles of all time and I did a spring clean of all my Microsoft Word folders. The former opens up all sorts of possibilities for me. I can explain to fellow passengers on the train why Savage Garden’s “Affirmation” has risen from position 137 to 127 since I last compiled my chart. And if I’m ever invited to speak at a tribute to Fats Domino, I can genuinely say that Blueberry Hill has inched up my list to number 61.
The latter activity of sorting out my word folders was depressing and reassuring at the same time. I found all the letters, reports, logs, court statements from 2010. Endless pages of meaningless drivel. 34 emails devoted to risk assessing Steven on a home visit. Volumes of lies. Threatening letters of withdrawing all the regular support team. Nothing affirming in Hillingdon’s savage garden. Reading my replies and letters made me cry. I was always so accommodating. I was relentlessly polite. I was reminded how terrified I was.
But all that bollocky nonsense is in the past. And risk management plans, one page profiles, co-production meetings & community activity logs are just ghosts. As far removed from Steven’s normal life as it is possible to be.
In the midst of all this, Steven’s honeymoon period in the new house ended with seven days of continuous meltdowns. The worst ones in years. Screaming. Hitting his head. Clawing at his face. He was in agony. Talking to him was impossible – he couldn’t hear or process anything. And then on Thursday evening, as suddenly as the meltdowns appeared, they stopped. “Dad. Rub my head and make it better”. So I sat for two hours, gently stroking Steven’s forehead, whispering reassuring words and he’s been okay since.
More than okay. Yesterday, one of those ” small places” things happened that really lift the soul. The support worker baked a cake, 12 inches by 12 inches. I suggested he and Steven pop half of it over to Uncle Wayne. Off they went and they returned 15 minutes later with Steven grinning from ear to ear. He’s seen Uncle Wayne, Auntie Jayne, Cousin Jodie and honorary nephew Henry.
Steven has never really done “just popping in” before. Anywhere. We don’t tend to get invited to places. So we don’t just turn up. I’ve always felt that an intense period of meltdowns usually is the signal of a major new phase in Steven’s development. Something big is about to happen. I’m not going to speculate what that might be. It’s not my place. Steven doesn’t need anyone to try and engineer his life phases.
But whatever it is, I hope it includes more popping in to places.
I like those kind of connections.
Have a look at this photo. Tell me what you see. It was taken on Thursday when Uncle Wayne came to do some jobs around Steven’s new house. The young chap in the photo is Henry, Wayne’s grandson. When Henry was born, Steven was over the moon that he had now become an “uncle”. Technically, Steven and Henry are second cousins but Steven sees being an uncle as very much part of being a man, so he’s become an honorary uncle:
After the guests went home, me and one of the support workers popped out to get fish and chips and the worker suddenly said, “This is one of the happiest days of my working life”. He explained that he was moved by Steven being such an adult and being gentle and interested in Henry. Later, after posting the photo on Facebook, someone commented, “You should send this photo to Justice Peter Jackson. Let him know he made the right decision all those years ago”. Both comments had me welling up. The photo captures a tiny moment in time. A short period where Steven will be the “adult” in a relationship. In a couple of years time, Henry will sail straight past Steven and that will be that. Normal positions resumed. Henry cried when it came to time to go home because he didn’t want to leave. Steven had a meltdown later in the evening because he wanted Uncle Wayne and Henry to come back. What could be more human than that?
This week has seen the second campaign for 7 Days of Action. It has been as uplifting, joyous, infuriating, thought provoking as the last one. Rather like using a sledgehammer to crack a nut, we called this campaign “Human”. A few weeks before the campaign, I was approached by the CeDR at Lancaster University and asked to write an introduction for an academic paper about the 1st 7 Days of Action. It certainly forced me to consolidate my thoughts and when I finished, I realised that for me, just one person in a campaign team, the most important thing was to present very human stories. I wanted people to read about Eden and Robert and the others and recognise something about themselves in their stories. I wanted the readers to laugh at the wit of the dudes. I wanted to tell stories about the little things, those things in small places, like wanting to go home to walk the dog, have a cooked breakfast or do complicated maths equations with their father.
One night in the week before the campaign started, I amused myself by copying and pasting all seven of the week’s stories into a word document and removed from the text all reference to learning disability, autism – anything that usually causes people to detach and other. It made for interesting reading. I started the imagine the furore of the Daily Mail readers if they read stories about people being secluded, pinned down, forced fed anti psychotic medication, all the indignities and abuses that the dudes in ATUS are put through. But the stories would read as being about “normal” people, those fictitious types that the Mail panders to.
One thing the campaign succeeded in I feel is the bringing together of people from all aspects of Planet Social Care. On Wednesday, there was an astonishing Twitter Live Chat, attended by 69 people of all shapes and sizes and professional status. I had conversations with other parents, people from NHS England, Social Care commissioners, AMHPs and people who’d just turned up because they cared. I felt hopeful.
Needless to say, during the Twitter chat and during the whole week long campaign, there was plenty to illustrate the gulf between the professionals and the families. It usually showed up through the language. I really don’t want to hear any more about “co-production”, “complex needs”, “positive behaviour support” or “person centred planning, or any of the other distancing phrases that became such a feature of the week. There was one funny moment during the tweet chat when someone found it incredulous that I wasn’t interested in the “skills” a support worker may have before employing them to work with Steven. We arm wrestled that one for a while and then she said that the interviews could be real co-production between the person, the family and the professionals. Luckily, the indefatigable Sam Sly stepped in and said “Just the person and the family will do nicely”. The stories from the week revealed two polarities – either a complete absence of professional input or way too much. My general rule of thumb is – back off until you are asked for your input.
I’ll finish with another photo. Steven has a support team of five and only one of them had any training (“skills?”) in autism before stating working with Steven. Here they are. Those unskilled, untrained guys:
I don’t know what you see. I see six guys hanging out together. Six guys interested in each other. Six guys who make each other laugh. Six guys who would go that extra mile for each other.
Here is the paper from Lancaster University – https://www.sevendaysofaction.net/news-articles/report-on-the-first-7-days-of-action/
Today’s Seven Days of Action featured two dudes, Eden and Jack. Two quite different guys whose commonality is they’ve both been let down by the services that exist to support them.
Eden’s story prompted the same furious, despairing response from many of the people who read it – “How the hell can it be justified that he’s been detained in an ATU for 8 years?” 8 years. One more time. 8 years. And no release date in sight. Eden hasn’t committed any crime.
Jack was released from an ATU in June and after three failed placements in as many weeks and the provider pulling out of the contract with less than 24 hours notice, Jack has been living back at home for 10 weeks with absolutely no support at all. Since the blog was written, the ex provider have decided to press for criminal charges against Jack for an incident whilst he was in their (non) care. And no sign of a new support provider anywhere.
Throughout the day, I’ve been getting riled by the odd professional comment and the trotting out of tired, patronising phrases. “Complex needs”. ” Challenging Behaviour”. Bullshit. Eden doesn’t have complex needs. His two big wishes are to have a cup of tea with his mum and to take his dog for a walk in the park. Jack doesn’t have challenging behaviour. But if the support team enable him to buy eight cans of cider (he doesn’t drink) and get pissed, then he might just kick one of the support worker’s car.
My nagging thought all day is how much the professionals who work with Eden and Jack must detatch themselves from any kind of human relatedness. I’m not talking sentimental. I’m talking about placing Eden and Jack in a box that has no recognition of their humanity. No recognition that the professional and Eden share the same human space. Nobody can possibly justify locking an innocent man up for 8 years.
I have two questions for the professional readers of this blog. Here is Jack:
1. As you read his story, what do you hear?
2. As you look at his face, what do you see?
I’d love to know.
With the latest 7 Days of Action kicking off today, Sara Ryan mentioned yesterday about looking at the history of medical institutions. I’m not bright enough to do that but I thought I’d share some personal memories of institutions.
I was brought up in Southall and anyone of my generation from there will have tattooed in their soul, stories of the old St Bernards Lunatic Asylum. It was a terrifying Gothic monstrosity that covered acres on a site along the Uxbridge Road. As a kid, I would often go on the 207 bus to Ealing with my mum and as the bus passed the asylum, you could feel the tension amongst the passengers. Most families in Southall have a St Bernards story.
My nan spent some time there. As I was under five at the time of her incarceration, my parents decided it was unwise to take me to visit her. I am eternally grateful for that best interests decision.
My (future) father in law worked at St Bernards as an electrician during the 1960s and 1970s. As a child, my wife wasn’t put to bed with tales of the Famous Five. Her bedtime stories were tales of her father repairing the ECT equipment! They haunted her for the rest of her life.
I have two cousins, who back in the 1960s were labelled “deaf and dumb”. They are a few years older than me and I hardly saw them at all as I grew up. Back then, families were totally under the direction of medical expertise and the professionals decided that Phillip and Gordon must be sent to a residential school in Margate. I think the family just accepted that. It was the done thing. I have a couple of photos of me visiting them but they look like holiday snaps on the promenade at Margate. No hint that between 5 and 16, my two lovely cousins were institutionalized.
One other childhood memory is the day the house down the road caught fire and the horrific sight of Mrs Bentley hanging out of her bedroom window, screaming for help. As an 8 year old, I watched her with a mix of terror and excitement. A few days later, I asked my Dad what had happened to Mrs Bentley and he replied the ominous two words, ” St Bernards”. Nothing more was said. Mrs Bentley never returned home.
In the late 1980s a very close friend was admitted to Hillingdon hospital mental health unit. She should never have been there. She had just had a devastating life experience and was experiencing deep sadness. One her first night there she was sexually assaulted by a member of staff. I’d brought her some walnut whips and during the assault the male nurse had eaten them all. Nothing came of it. Nobody believed my friend. My memories of the place are of the piercing screams, the indifferent staff and the smell of stale piss and overcooked vegetables. Until her death, many years later, my friend never got over that 4 month admission.
Doing the job I do, I’ve seen many clients who’ve spent time in the same unit. I saw a huge bloke – 6ft 4 and 22 stone who had awful stories of the place. He needed lots of nurses, usually 8, to pin him down whilst they injected his arse cheeks. He would be locked in a seclusion room for days at a time. In a scuffle, one member of staff cracked his ribs but the ward management refused to take him over to A&E. He needed years of counselling to come to terms with the brutality of his 10 month stay.
The ATU where Steven was detained in 2009 looked nothing like St Bernards or the Hillingdon MH Unit. From the outside. Inside, it was a run down, small institution. What struck me the first time I visited him was the smell. Exactly the same smell that I whiffed 20 years earlier when visiting my friend. What also hung in the air was the smell of fear, of tension, of violence. I’ll never know what it was like for him but I lived for a whole year with the desperate anxiety that he would be killed.
I’m 57. My first experience of institutions was at 2. What has changed in 55 years? Not a lot really. Eden is as many miles from his home as Philip and Gordon were in the 1960s. Connor Murphy, as misunderstood as Mrs Bentley, is locked away, as the professionals have neither the insight or interest to help him have a decent life. Like my friend in 1989, Steven was assaulted by a staff member, although this time the member of staff was prosecuted despite management attempts to hush it. And Tianze, a quarter of the size of my client, is daily pinned down by five staff to be injected with anti psychotics.
1961. Or 2016. What progress?
7.58 am. I’ve just woke up. I had a night at my flat to try and recharge my batteries and slept for nine hours. I’ve been trying to reflect on the last four weeks but it’s too early to get any perspective on the task of turning a shithole into Steven’s forever home.
People keep telling me that I should feel a sense of achievement. A sense of pride. I don’t really feel that. I really like the flat. I love the cosy quirkiness. It’s great watching Steven marking his territory and getting used to his new surroundings. “Dad – I’m going up to the toilet. (Laughs). No more stairs. Can’t go up to the toilet”. It’s been bloody hard work and I don’t think pride comes into it.
We’ve had such fantastic support. Jayne and Wayne have done more than I could ever thank them for. The support workers have gone beyond the call of duty. All those wonderful people who gave money through gofundme have helped enormously to create Steven’s new home. And it’s been great how some of the people who’ve contributed to the move have really seemed to have understood Steven and pulled out the stops – Maxine & Debbie the gardener’s, Roy the decorator, Luke the removal man, Bradley the TV aerial man. Normal people with an understanding and humanity that we seldom get with social care services.
The council continue to create daily hurdles. I’ve had two letter about non payment of rent. Housing Finances won’t speak to Housing Benefit, so I have to act as an unnecessary middle man between the two. Tenancy Management have sent two nagging emails about the new Pay to Stay initiative and want Steven’s income details that I supplied to their colleagues just four weeks ago. The Housing Manager was meant to visit last Wednesday to discuss outstanding issues (broken outlet pipe, gap in front door, light in bathroom that keeps going out) but she didn’t turn up and we haven’t heard a peep from her since. I keep thinking of Sir James Munby’s observation that the State is the servant and not the master. He’s right but old fashioned. His statement presupposes there are services. But the last four weeks have shown that there aren’t any services anymore. Just lots of people trying to be very important and justify their jobs. Apart from the social worker who has been a great advocate, everyone else has been a time wasting hindrance.
Steven’s housing advocate is still fighting for him to be given a lifelong tenancy. Even though he’s been in temporary accommodation for three years, the council’s policy is that all new tenants are on a “probationary” year. It’s nonsense, of course. Another pointless policy designed to let you know where the power really lies. We’ve got an appeal in. But the damage is done. How can anyone ever feel really settled? In a year’s time, will the £7k that I’ve spent building Steven a forever home be money wasted? Steven talks about “living in the Cowley house forever and ever” but I don’t know whether he believes that. Since he was transitioned into adult services 8 years ago, he’s been moved five times, each time the move has been determined by the State.
So for now, we’ll just admire the view of the green (both inside and out) and get on with trying to live a meaningful, happy, fulfilled life.
And rely on Mr Bean to look over us: