Thursday, 1 May 2014

Story Forty Seven - Personal Care

I've been putting off writing this story since day one of this blog. Although it might appear quite trivial in the overall scheme of things that happened during 2010, it was the thing that left me feeling total humiliation. I never included the story in the Get Steven Home book and I've never told the story when I've been invited to speak at events. Deep breath Mark......

It was the end of March 2010. The fake transition home plan was underway. One day the Unit decided that in preparation for Steven coming home, I needed to be trained the "positive behaviour" way and set up a training programme for me.

The first three day programme was to how to manage Steven's personal care. I was to be instructed by Hildegard (remember her) on toileting, bathing, shaving and drying. The Unit had devised a symbol chart to help Steven with his personal care and I had to learn it too.

So, I turned up at the Unit one morning at 6am and was put through my paces. The first lesson was just observation, so I sat on the toilet and watched Hildegard teach me how to wash Steven's hair. We covered water temperature, how much shampoo to apply etc etc.  The second lesson was more observation - this time the evening bath. As Steven always has his daily shit in the evening, it included me watching how they wipe his bottom.

The third lesson was me taking charge and Hildergard observing me, giving me feedback as we went along.

It was awful but the thing that stabbed deepest was she made me wear gloves. I should have shouted "fuck off" but I felt so utterly intimidated. In my scrambled head, I thought that if I did something wrong or failed in my learning, they might stop him coming home. So, for the first time in 19 years, I wore gloves as I wiped Steven's arse.

And that was that. There was never any more training after that. I had done Steven's bath twice a day for 19 years but someone had decided I needed professional input.

When we eventually found out that the council never intended to let Steven come home, I've asked myself many times over the past three years - what was the point of the training? Was it conscious? Did they mean to batter my confidence? Or did they arrogantly but genuinely believe that this intervention might be useful? I don't know.

And there you go. Did it feel cathartic telling this story for the first time? Nope.


  1. Don't beat yourself up. It's just the sort of pointless tick box humiliation such places and systems practise as a matter of course. I doubt they even thought twice about it.

  2. I don't think what "they" were thinking is what made it so humiliating. It is a whole heap of hidden and mistaken assumptions about what makes us "fit" to care for people we love. You read CQC reports about how staff have required the necessary "training" as if that was the key to - you know - actually caring. Not always, it seems

  3. Spew-inducing arrogance on the PBU's part. All part of their sickening drive to demonstrate that their care was perfect and yours inadequate. Anyone with the merest trace of empathy can understand why you didn't want to tell this story. The way you and Steven were treated was palpably intended to be humiliating for you both. But thank you for telling it anyway. You have so much courage and the 'professional' bullies had none.