I’ve been feeling pretty wasted the last few days. It’s been a horrible week on Planet Social Care. The disappointing outcome to the Richard Handley inquest where a team of barristers for the professional “interested parties” managed to convince the Coroner that a verdict of “neglect” cannot be handed down if several parties all had a contributory part to play in a cumulative neglect. That was followed by the dreadful scandal at the National Autistic Society run home, Mendip House. Quite appalling abuse of the people living took place but no criminal prosecutions will be taking place. And the NAS has shown utter contempt for those residents, their families and the charity’s many supporters by first trying to hush up the scandal over a number of years and then once the serious case review was published they created a separate Twitter account to respond to peoples’ concerns. In the midst of these two major media stories, there has also been the latest chapter in Steven’s Community DoLS adventure.
The first two stories trigger off a familiar response in me. Do you remember the chant that Charlie Dalton used to give in the cave in the film Dead Poets Society? “Got to do more. Got to be more”. I hear a similar voice in my head when one of these monstrous scandals breaks. I have to do something about it. NOW. I lay awake for hours on Friday night trying to think of something that I could do, even imagining forming a new charity that would operate with the integrity that so many of the big ones lack. Fortunately a good dream that night stopped that one in its tracks. In the dream, I was with a group of people surveying some land with the intention of building something new in the space. The land we were inspecting had previously been a grand estate but was now just a wasteland. In the centre of this estate was a large void. One of the group got into the void for further inspection and got trapped there amidst the blood, gore and wreckage of the hundreds of bodies that had been buried there at one time. We wisely decided that this was no place to make our home and moved off to find our own space. The big charities are not of this time. They have no relevance anymore. But they will continue to occupy a rotting space and it would be foolish to try and muscle in on that space. More wise words from George Julian on Twitter yesterday and I calmed down. I do enough. That’s good enough.
Whilst pondering the Community DoLS yesterday evening and the fact that the assessor has concluded that Steven lacks the capacity to consent to his support arrangements and is therefore deprived of his liberty, I came across a fantastic piece of writing from Rob Mitchell. It’s a five star composition (and gets an extra star because he name checks me and Steven):
Where is love in the DoLS scheme? Okay, I’m a comedian. It’s nowhere and it ain’t going to find its way into a mental capacity assessment. I’ve written before but I feel that capacity assessments are loaded against learning disabled people. By their very nature, an assessment is totally head centred. Feelings and intuition don’t register. Love wouldn’t appear anywhere on the form.
Steven challenged this absence of love during the assessment on Tuesday. The assessor was trying to find out if Steven knew why the support workers go with him to the shop. The care plan reason is to support Steven with road safety; help him with the money; protect him from himself if a dog suddenly starts barking. Steven thought about the question for a while and answered “Cos Alan and Des are Steven Neary’s friends”. Now that’s not an example of Steven’s limited understanding or his lack of language. Yes, he wouldn’t consider the “official” reasons but that’s exactly how he sees it. They go with him to the shop because that’s what friends do.
I had further clarification of this yesterday afternoon. Steven and I were doing our Saturday taping session and were playing George Michael’s “Outside”. In two weeks time, we’re going to see a Wham! tribute band. I reminded Steven of this and he immediately checked out who was going with him. When I said me and Alan and Michael, the smile couldn’t have been bigger. He went bounding off into the hall singing “Club Tropicana, drinks are free”. I don’t want to over interpret his reaction but it reminded me of those times when I’ve been getting ready to meet up with friends and that moment when your heart sings a silly song in recognition of the friendship you’re about to experience.
And you don’t need to do more.