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CaminoLB @ Cowley

I’ve had a little idea.

Anybody want to join in?

In the autumn of 2016, the Justice for LB crew did the Camino walk. Sara, George, Alicia, the My Life My Choice gang and several other campaign supporters did the inspirational walk to honour Connor and all those other people who have died preventable deaths. The daily updates, the photos, the stories certainly made the heart sing.

From 31st March to 14th April the Justice for LBers are off to Spain again to complete another phase of the Camino walk.

http://caminolb.org.uk

This morning Alicia tweeted that someone who is unable to go to Spain wanted to support the campaign and suggested a local walk to them during the big fortnight.

I thought this sounded a brilliant idea and said that I would like to do a #CaminoLB@Cowley. As the day has progressed, I thought it would be quite powerful to do a walk from Steven’s house to the ATU that he was detained in during 2010. It’s not very far actually so decided to take the long route via the canal towpath.

Wouldn’t it be great if any day during the fortnight supporters did a similar walk in their area? A walk from your home to the nearest ATU. A photo at the beginning and a photo at the destination? To

Who is in?

UPDATE (19th January)

I’ve received some feedback expressing the fear that if the destination of the walks are ATUs, this may piss the ATU off and this could lead to negative repercussions for the person detained. I do understand that fear and it came up often during the 7 Days of Action campaign. At the same time though I can’t recall seeing any evidence that there are better outcomes for families that don’t speak out about their experience.

Walking to an ATU is just one suggestion. If people are interested in taking part to honour those who’ve died preventable deaths, the walk can be to anywhere.

For me, the most important thing is to show solidarity with the #CaminoLB walkers.

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One Of Our Own

Bear with me. I’m trying to pull several strands together in this post.

Yesterday I saw one of those almost daily conversations on Twitter about what do you call a disabled person – a client or a service user? I cheekily contributed that perhaps we should follow Jeremy Hunt’s lead when he spoke about learning disabled people at a House of Lord’s select committee and call them “commercial opportunities”. It would be more honest. My problem with “service user” is that it infers that someone is using services but we all know there are no longer any services left to use. In 2018, it’s a meaningless term. But the term “service user” others and I guess that’s the point of it. It establishes the unequal dynamic which most “commercial opportunities” encounter.

Since last Wednesday, Steven has had a whole army of workmen in his house sorting out the damp problem. It’s been fascinating watching how they interact with Steven. Steven doesn’t discriminate so to everyone of them it’s been, “Hello man. What’s your name man?” The most heartening interactions over two days was with the younger of the two bathroom fitters. Whilst the guys were working Steven put on his Amy Winehouse DVD. Amy was obviously a favourite of the workman and he started singing along to Back To Black. This excited Steven no end and a relationship was formed. Pare back the quirkiness of Steven’s conversation and it was just two guys sharing a mutual interest. When they were saying their goodbyes on Thursday, the workman shook Steven’s hand and said “Goodbye Steve” and it was genuinely warm. He’ll remember Steven. Needless to say, Steven will remember Lee forever. After all, he still remembers Eric the boiler man from 1997, who liked Lionel Ritchie.

I had a nice moment in the gym on Monday. On Friday, I felt something go pop in my right tricep. It was quite tender all weekend and I was tentative to say the least as I started a chest workout on Monday. Later in the changing room, one of the regulars who I’d nodded to before but never spoken to asked me how my workout had gone. I told him I’d been a bit cautious after what happened on Friday. He said, “You should have asked me or Mo (his training partner) to spot you”. I replied that I didn’t like to as they were immersed in their workout. He then came out with the classic, “You daft cunt. We look after our own here”. It made me laugh and I found it quite touching. I’m not sure what I’ve done but I’m now classified as “one of our own”.

This morning whilst channel hopping I came across a debate entitled “Is autism a gift?” It was an irritating experience and within seconds it became about “those people with incredible gifts”. One caller phoned in to say that autism was both a gift or a curse. Whatever your view, it was a classic example of them and us. The gift and a curse comment covered all bases as it allowed the speakers to express admiration and sympathy in equal measure. The discussion petered out but the overriding impression was that autistic people are not one of our own.

I remember one of Steven’s cab drivers telling me how much he enjoys driving Steven around whereas some of his colleagues had asked to be taken off the rota. I thanked him and he said, “you either get him or you don’t”.

Is it that simple? Are you either “one of our own” or a gift that elicits admiration and sympathy?

Or are you just a person? Another human?

Flawed Floors

It seems such common practice in the world of social care that requesting support or meeting needs gets expressed in terms like “fight” or “battle”. The words aren’t accidental. They get used because they describe exactly the situation so many people find themselves in. It cuts across ages: from SEND experiences in early life through to building a support package when you’re transitioned into adult services.

Do you remember that advert where the logo was, “the bank that likes to say yes”? Social care is the bank that likes to say no. It does so with such alarming frequency that it can’t be an accident. It must be intentional. That’s when the battles start. Tribunals, appeals, ombudsmen, court of protection all come into play as arenas for the fights and thousands of pounds are spent (wasted) in justifying the “no” position.

I’ve been so immersed in the social care swamp for over 20 years that I tend to take a battle for granted. Sometimes I ponder whether the sort of battles the learning disabled and their families encounter happen anywhere else. I spent 16 years working for a local authority. Firstly, I dealt with claims in the Housing Benefit department. I remember delays in processing claims but I don’t recall any policies or practices that denied people what they were legally entitled to. I never attended meetings or training where we were instructed how to circumvent the regulations to stop people receiving their benefits. Later I became a training officer and my memory is that if a training need was identified, it was acted upon. Also, I was never asked to manipulate the training that I was delivering to save the council money. I left there in 1999 and wonder how much has changed since.

Steven moved into his Cowley home in October 2016. Almost immediately we realised there was a damp problem: mainly in his bedroom but also in the bathroom and hall. I reported the matter straightaway and realised that another battle might be looming. Typically, the first inspector tried to blame us for the damp. Not opening the window enough. Putting wet clothes on the radiator. Breathing at night. I made that last one up but the initial response from the council focused resolutely on avoiding accountability rather than instigating repairs. This position lasted months and in the meantime the damp worsened. I brought a humidifier. Washing down the walls was added to the support workers’ weekly rota.

Last year, the shower packed up and gave the first evidence that our suspicion that the shower was creating the damp validity. After the workmen took the tiles off the bathroom wall, we found the wall the soaking. But still nothing changed. New shower and new tiles but the damp persisted. The walls have been sprayed several times. I’ve spent hour upon hour on the phone to council repairs. But still the damp spread.

Just before Christmas we had another inspection. The inspector obviously hadn’t been on “the bank that likes to say no” training course. For the first time in 15 months someone took the issue seriously and he was focused on sorting it out. Last week, they took the shower out and replaced it with a bath. This week the walls are being stripped back to the rendering and being replastered. An air vent is being fitted. Last week’s bath fitters showed me the extent of the problem. The floor was sodden. The back wall was sodden. They couldn’t finish their work until the area dried out. Tomorrow, they’re coming back to lay a new floor and fit the bath panel. The plastering should be completed by tomorrow evening too. Hopefully by the weekend we’ll be able to redecorate Steven’s room and he can move back into it. Steven has coped very well with the disruption. He made a new friend in the bath fitter in their mutual liking for Barry White and he is enjoying the adventure of sleeping in my room.

I’m not saying that the 15 month fight to right this problem is because Steven has learning disabilities. For once, that doesn’t come into the equation. This must be widespread. A deliberate policy to avoid accountability through blame followed by patchwork repairs and interminable delay must be commonplace.

As a way of dealing with people, it’s as mouldy as the bedroom wall.

 

Could It Be Forever?

Determined to be a bit more upbeat after yesterday’s sad post.

For Christmas I got a copy of the Boys Book of Knowledge annual from the year I was born (1959). Amongst its many joys is a section on how to construct your own time machine. It tempts the boys with the premise of flying forward to 1982. Disappointingly it doesn’t prepare boys for an encounter with Duran Duran. I’m no expert on time machines but the article does seem over reliant on cardboard and “pieces of wire you will find in your father’s workbox”. But I’m prepared to give it a go. I don’t have a workbox ( I don’t remember my father having one either) but I’ve smashed up an old toaster to collect the necessary wires. I need to pull my finger out because I need the time machine to be assembled by Wednesday. Then I can transport myself to Tuesday 17th and all the repair work at Steven’s house will be complete. Also, by then, we’ll be deep into January and the annual anxiety about being taken away will have started to fade.

As I wrote yesterday, Steven wants to “live in the Cowley house forever”. Forever? It’s a tricky prospect at the best of times but when you’re learning disabled your “forever” is so reliant on other people. It’s probably better to focus on the next week rather than on forever.

One thing that 2017 showed was that there is no reason why Steven shouldn’t get his forever wish. He’s blossomed in his own home. My favourite memories of the year are the smiles of utter contentment.

Here are some forever moments from 2017:

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Forever

It was 8 years ago yesterday that Steven was taken from his home. This time of year always triggers the most distressing anxiety. This is how we spent two hours this afternoon. I was expected to repeat back every sentence by way of reassurance. It was accompanied by sobbing, punching his own head and ripping his shirt.

“Watch red Mr Bean video in the Cowley house forever. Watch the blue Mr Bean video in the Cowley house forever. Watch the green Mr Bean video in the Cowley house forever. Watch the purple Mr Bean video in the Cowley house forever. Watch the yellow Mr Bean video in the Cowley house forever. Watch the black Mr Bean video in the Cowley house forever. Watch the pink Mr Bean video in the Cowley house forever. Watch Mr Bean in America video in the Cowley house forever. Watch the Mr Bean’s Holiday DVD in the Cowley house forever. Watch the Mr Bean’s best bits video in the Cowley house forever. Watch the red Fawlty Towers video in the Cowley house forever. Watch the brown Fawlty Towers video in the Cowley house forever. Watch the green Fawlty Towers video in the Cowley house forever. Watch the blue Fawlty Towers video in the Cowley house forever. Watch Mrs Doubtfire DVD in the Cowley house forever. Watch Grease DVD in the Cowley house forever. Watch Cry Baby DVD in the Cowley house forever. Watch the Full Monty DVD in the Cowley house forever. Watch Muriel’s Wedding DVD in the Cowley house forever. Watch Priscilla DVD in the Cowley house forever. Watch Toy Story 1 DVD in the Cowley house forever. Watch Toy Story 2 DVD in the Cowley house forever. Watch Toy Story 3 DVD in the Cowley house forever. Watch The Erasure DVD in the Cowley house forever. Watch The Proclaimers video in the Cowley house forever. Watch The Pet Shop Boys DVD in the Cowley house forever. Watch the Abba Gold DVD in the Cowley house. Watch the Abba DVD with Pete Waterman in the Cowley house forever. Watch the Abba video with Neil Pearson in the Cowley house forever. Watch Mama Mia DVD in the Cowley house forever. Watch the Abba puppets DVD in the Cowley house forever. Watch the blue Beautiful South video in the Cowley house forever. Watch the Beautiful South video with Love Wars in the Cowley house forever. Watch the green Beautiful South DVD in the Cowley house forever. Watch the brown Beautiful South DVD in the Cowley house forever. Watch the Enrique on his motorbike DVD in the Cowley house forever. Watch the Tears For Fears DVD in the Cowley house forever. Watch the Spandau Ballet DVD in the Cowley house forever. Watch the Cher DVD in the Cowley house forever. Watch the Darts DVD in the Cowley house forever. Watch the Mika DVD in the Cowley house forever. Watch the Keane DVD in the Cowley house forever. Watch the Spice Girls DVD in the Cowley house forever. Watch the Shania Twain DVD in the Cowley house forever. Watch the Soft Cell DVD in the Cowley house forever. Watch The Sweet three DVDS in the Cowley house forever. Watch the Elvis Costello DVD in the Cowley house forever. Watch The Jam DVD in the Cowley house forever. Watch The Style Council DVD in the Cowley house forever. Watch The Christians video in the Cowley house forever. Watch the Busted DVD in the Cowley house forever. Watch the Travis DVD in the Cowley house forever. Watch the Anastasia DVD in the Cowley house forever. Watch the Lightning Seeds’ video in the Cowley house forever. Watch the Elton John at his show DVD in the Cowley house forever. Watch the Adam Ant DVD in the Cowley house forever. Watch the white Kate Bush video in the Cowley house forever. Watch the Will Young DVD in the Cowley house forever. Watch the Duran Duran DVD in the Cowley house forever. Watch the David Bowie DVD in the Cowley house forever. Watch the Kirsty McColl DVD in the Cowley house forever. Watch the white Live Aid DVD in the Cowley house forever. Watch the blue Live Aid DVD in the Cowley house forever. Watch the Boney M DVD in the Cowley house forever. Watch the Bryan Adams show DVD in the Cowley house forever. Watch the Fatboy Slim DVD in the Cowley house forever. Watch the little Housemartins DVD in the Cowley house forever. Watch the little Pet Shop Boys DVD in the Cowley house forever. Watch the little Right Said Fred DVD in the Cowley house forever. Watch all the Men Behaving Badly videos in the Cowley house forever. Watch all The Gladiators videos in the Cowley house forever. Watch all the Good Life DVDS in the Cowley house forever. Watch the all the people singing Abba songs video in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Bananas in pyjamas in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Walking through the jungle in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Walking on the Moon in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Cats in the Cowley house forever. Watch the red Coronation Street video with Rita and Mavis and Alec on the boat in the Cowley house forever. Watch the blue EastEnders video with Phil and Grant taking their clothes off in the Cowley house forever. Do massive music tapes with Dad on Saturday in the Cowley house forever. Do massive music tapes with Dad on Sunday in the Cowley house forever. Talk to Dad in the living room in the Cowley house forever. Talk to Dad in the kitchen in the Cowley house forever. Alan will cook your chicken pie on Thursday night in the Cowley house forever. Go to Jay’s sweet shop on Friday and Saturday and Sunday in the Cowley house forever. Go to bed in the Cowley house forever. Do a poo in the Cowley house forever. Have my lovely surprise in the Cowley house forever. Not going to a house with stairs. Staying in the Cowley house with no stairs forever”.

Happy New Year.

To Earth With A Bump

So that was Christmas 2017. We had a lovely time & the George Cole & Dennis Waterman record certainly added to Steven’s cheer.

But before we’ve taken down the decorations, up popped the council twice to remind us that it’s silly to wish it could be Christmas everyday.

Yesterday I got an email from the social worker about the Community DoLS. She’s got to start all over again and redo the mental capacity assessment! She wants to bring a male colleague in the hope that he’ll engage Steven better. This is to assess whether Steven has the capacity to consent to his 2:1 support arrangements which in their eyes amount to a deprivation of Steven’s liberty.

It is such total nonsense, I can’t put any energy into it at all. Does anyone in their right mind consider having support to go to the sweet shop, a deprivation of liberty? When we go to see the Wham! Tribute band next month, are we seriously depriving Steven of his liberty? The acid test has become totally corrosive of how a normal life functions.

Then, next Wednesday we have the start of all the repair work to Steven’s house that have needed doing since he moved in. We’ve got two days next week of a bath being fitted and then two days the following week of Steven’s bedroom being replastered to repair the damage caused by the damp problem. Then the following week we’ll have to redecorate the bedroom again because the council don’t consider that their responsibility.

I haven’t told Steven yet. He’s coped with Christmas pretty well but there’s still the “am I going to be taken away in January” anxiety to contend with. I’ve had endless discussions with the support workers about how to manage those few days because Steven won’t be able to use his room for at least three days. We toyed with the idea of booking into a hotel but scrubbed that as it may play into the fear of being taken away. The best solution is that Steven stays in his adored Cowley house and sleeps in my room and I sleep at my flat for the duration.

I guess the good news is by this time next month the house will look like it should have done when Steven moved in back in October 2016.

I suspect the Community DoLS business will rumble on much longer.

 

Nearly Time

It’s nearly that time of year again. I’m not talking about annual sprouts and cheesy bollocks day. Unfortunately, I’m talking about the 30th December and the anniversary of Steven being taken away.

It’ll be eight years, a week today and I wish more than anything that I wasn’t still writing about it. But eight years on, the anxiety is still there for Steven. It may not be quite as sharp as it was seven years ago but it’s still making its presence felt, getting in the way of what could be a joyous time of year. At the moment, Steven’s attention (and anxiety) is focused on whether he will get his Edward Scissorhands video on Monday. But he’s already checking and seeking reassurance that life will go on as normal after Johnny Depp has come out of his wrapping paper. It will crank up even more from Tuesday.

We try to speed up time. Each year the Christmas decorations come down earlier and earlier. I will go off on Boxing Day evening, pretending that I’ve got to go to work. But Steven’s not daft and he knows that life is in limbo until January comes along. Or in his marking calendar, until the Loose Women return from their Christmas break. Then he can start to feel safe again.

I can’t imagine it happening again. If I fell ill like I did in 2009, I would go off to my flat to recover and leave the support workers to manage. There would be no question of Steven having to be the person who went away. Ever since the court case there has always been the threat of “a deterioration in behaviour” leading to readmission but I can’t envisage a situation where that might happen and between me and the support team we couldn’t cope. Since 2009, Steven’s coped with three changes of home, the death of his mother and coming off medication and none has warranted the input of in patient services. Probably the worst time for behaviour was when Steven had the liver problem and was in such terrible pain. Imagine if that had led to readmission? His medication (which was causing the problem) would have been increased from day one and he would have been subjected to all manner of restraint techniques that would have added to the pain. Quite possibly, it would have killed him.

But it’s not about what I can or can’t imagine. Steven fears the possibility and that has never really abated. I question whether I unconsciously keep the memories alive. After all, I’m writing this post! I’ve got seven bookings to tell the story at events during January and February. It’s become part of my income stream. Just this week the BASW published an article headed “Five Human Rights Cases That Changed Social Work” and Steven’s story was one of the five. It’s an old story now but the consequences are very much alive.

There is no answer. Sometimes, something happens that affects so deeply that time isn’t the great healer.

Last night Steven was so excited because BBC4 showed their annual Christmas Top of The Pops. We’ve learned that 31 days of awful anxiety are as inevitable as Roy Wood wishing it could be Christmas everyday. In Cowley, we thank heavens that it’s not.