When I deliver the Get Steven Home story I’m often asked whether there has been any ongoing trauma as a result of Steven being kept away from home for a year. I tend to downplay my response as the positives of Steven’s life now far outweigh any negatives.
I’ve spent the morning with Steven and realised there is definitely a pre ATU and post ATU difference to how Steven verbalises his anxiety.
Prior to 2010 and as far back as I can remember, Steven had a catalogue of phrases that he would use in moments of anxiety or agitation. I really don’t like the term “meltdown” but the script would come out just prior to the meltdown reaching a crescendo. I learned early on that Steven expected you to repeat back to him what he had just said and then to offer some sort of reassurance that the worry he had wouldn’t actually happen. However, I also learned that whatever you said had little impact on whether the anxiety abated or escalated: that was entirely down to whether Steven could arrest the mounting agitation.
The script was incredibly familiar. “Want Robbie Williams go back to Take That”. “Want John Waterman (his favourite primary school teacher) go back to Grangewood”. “Want Richard Whiteley not be dead and go back to Countdown”. You can see the pattern here. It’s all about a loss or absence that Steven didn’t fully understand and the need for people to be in their expected, rightful place. The other thing was that none of these expressions were directly about Steven: they were about things he wanted to happen but weren’t about things directly happening to him.
For a few years after coming home, the anxiety expression couldn’t have been more direct or clear. We never heard of Messers Williams, Waterman or Whitely again but everything became “Don’t want to go back to M House. Steven Neary’s staying in the Uxbridge/Cowley house forever”. In some respects it was easier to offer reassurance on this matter, although we all know that ultimately we, as family, don’t really have the final say on where Steven lives. And Steven certainly doesn’t. So the script changed and became more Steven focused but the effect on Steven’s anxiety remained the same – only he could manage his own anxiety. It did feel that this anxiety that had existed since childhood had grown another layer that could be classified as trauma. Accidentally dropping a bowl of Frosties would get the immediate terrified reaction. “Not going back to M House?” Is that trauma?
In the last two years, the script has changed again and I think demonstrates how important Steven’s own home is to him. Enough time has now passed for the fear of a return to M House to have become less gripping. These days, the emphasis is different and Steven has a different script for different people. With Alan, he will say “Steven Neary’s not going to the police station?” With Michael, he looks for reassurance about the weekend, “Steven Neary’s doing a new tape on Saturday afternoon with Mark Neary?” With me, the focus is Thursday – “Steven Neary going to watch his dvd when he gets back from swimming on Thursday?” All of them are about seeking reassurance that life in the Cowley house will carry on just as Steven expects and wants. Today, I had to repeat the Thursday line 27 times before I left. Yesterday I only had to say it 3 times. I like Thursdays best – I don’t have to say it at all.
The first thing I noticed on my return to my flat was the DoLS form still sitting on the dining room table. (By the way, I spilled a bit of gravy on it last night. Will that prompt yet another form?) It got me pondering again how the mental capacity assessment discriminates against the very people it’s meant to be safeguarding. Steven is meant to give a cognitive explanation as to why he wants to live in his home. He is expected to demonstrate he can weigh up the pros and cons of his living situation. How he feels about it and what he intuits about it count for nothing at all. Anyone listening to him when he feels anxious can be left in no doubt how important his home is to him but that wouldn’t figure in the DoLS assessment at all. Those rules don’t apply to the rest of the world. I chose my flat because I loved the view of the canal bank from every window. I didn’t give an awful lot of time to weighing up the pros and cons of the survey results. I suspect if I was being assessed for a DoLS and I stated that I wanted to live in my flat because I love watching the barges and the ducks, my capacity might be questioned. For a learning disabled person, there is no doubt. No space for a feeling response but considerable weight given to being able to manage a tenancy.
Most people don’t really live with the fear of their home being taken from them. If you’re learning disabled it’s just another daily fear that you have to learn how to manage.