Yesterday, I had another of those awfully sad reminders of 2010. The sadness is only partly alleviated by being able to glance across at Steven and seeing him so calm and content.
By September 2010, Whistlers Mother & the manager of the ATU had decided that what Steven needed was a (fake) person centred plan. When I wrote about this is in the book, I titled the chapter “Carl Rogers Spins In His Grave”. Like nearly everything else that happened that year, Hillingdon used something that is meant to be positive as a shield for something deeply unpleasant. The whole year was marked by something being presented as good whilst hiding a darker, murkier agenda.
I’ve written many times before that the starting point for the person centred plan was for Steven to come up with a wish list of things he wanted to achieve. With trust and hope, Steven came up with six things, all of which were refused. To me, that was the end of the person centred plan. It exposed the contempt on which it was based. But Hillingdon ploughed on with the second phase of the PC plan – a life story book and videos of Steven doing his favourite things. They really believed we were complete fools because they couldn’t see that we could see that this was all about their plan to move Steven 300 miles away. In social care, it is commonplace to do life story work before the person moves away. We have Steven’s life story book prior to his adoption.
I can’t begin to describe how hard it was putting the life story book together. Collecting photos of all the important people to Steven, knowing that he would never see them again. And having to pretend that all this was in his best interests.
The video was even worse. I feared that within weeks, these films would be the only thing I’d have left of Steven. But we did the films anyway. Despite the real motives, I felt they might prove useful if we got to court.
Last year my home PC packed up. Our computer handyman managed to save everything from the hard drive, except for these videos. There felt a certain irony when he told me the files had been corrupted. I was disappointed but told myself that they were visual evidence of a horrid time, so perhaps their loss wasn’t a bad thing.
Yesterday morning, I treated myself to a new Just A Minute cd that I slipped into the CDROM. I don’t think I’ve played a CD or DVD on my new PC before but a menu bar appeared with “videos” on the drop down menu. I clicked on it and there they all were. 24 person centred plan videos, uncorrupted. Short films of Steven on home visits as part of the (fake) transition home plan, at the gym, the pool, the water aerobics group, the day centre. Needless to say, I couldn’t resist the temptation and started to watch them. In some ways, the videos could have been done in the last week, as Steven still does all these things. But the danger in the films is tangible. Steven is not the danger – he was in danger.
The worst film is of Steven’s two most experienced support workers taking him to the water aerobics group. The filming is done by the assistant manager of the ATU. There is a constant commentary as the manager reminds the workers of the risk management programme as they get out of the car and walk to the entrance. It is patronising and humiliating. And it’s all a sham. The narrative is for the court. It was all about creating a frame for the picture they were painting.
This is why I have a problem watching them now. I wish I could watch them as an authentic diary of Steven doing things that he loves. I can’t. The films have an invisible backdrop that turns my stomach. I might be watching Steven singing some Proclaimers as he does his chest presses with Adam, his personal trainer. But I’m also seeing my shakes and tears as I hand back the camera, knowing how these pure pictures will be manipulated.
I was mid viewing yesterday when Steven stopped by my bedroom on his way to the toilet. I was watching a clip of Steven, me, Adam & a support worker singing “Glory glory Steven Neary” after he’s scored a goal. Steven laid down next to me on my bed and said – “The Flex gym videos are back. Steven Neary’s happy now”.
What do you do?
Love, Belief and Balls 
Bittersweet magic.
It must be so satisfying to hear Steven say that he is happy now, and yet so awful remembering the mammoth struggle you had to get him out of that ATU.
Actually Mark I remember the piece of paper we got from our LA with my son’s wish list of what he wanted and needed to do ‘in the community’ when his day centre closed. It was completed after an hour in a room in the then day centre by a member of staff. (I still have it with all the other paper promises that did not materialise) Lets put it this way, it would have been easier to say what he did not want and then maybe he would have ended up with something he liked.
Now our LA has outsourced its day services out to an organisation who’s motto is ‘everyone has the right to a good life’ From the people I have met so far, I really think they mean it.
Today the long delayed report into deaths in Southern Health NHS Trust has been made public.
There is a back story still to be told around how just how many people, who could have continued to live healthily with support in the community, were placed in residential care such as Sloven because they became poorly through exclusion from safe (far less happy) health and social care …..by LA’s brutally protecting their budgets ?