Here I’m Not
Yesterday I attended the Learning Disability Today conference in London. It was very well attended, had some excellent speakers and tried to tackle the big subjects in the learning disability world.
So why did I feel more and more uneasy as the day wore on? With a handful of notable exceptions, most of the speakers didn’t have a learning disability. Most of the messages were along the lines of, “Things are really shite but we have to keep fighting”. Co-production was very popular but it was fundamentally about what can we do for you. It was, where are we, five years on for Winterbourne View?
Sorry if it appears like I’m always knocking them but Mencap had a stall amongst the exhibitors. A few people with downs were wandering around, wearing t shirts with ” Here I Am” emblazoned on them. It smacked of dressed up dolls. Surely the fact that the people were there said Here I Am. It didn’t need the rather patronising costume.
But it focused my unease because in spite of the good intentions, for the vast majority of learning disabled people, their t shirt would have read “I’m Not Here”.
I was asked to speak in a panel session about our experiences of having a personal budget. I was acutely aware as I spoke that I was presenting a narrative purely from my perspective. Nothing to do with Steven who I don’t think has a view on personal budgets. The budget is a pain in the are for me but its not for Steven. In fairness, I was making the point about the inaccessibility of personal budgets but it was about me. When I sat back down, I realised that for Steven, the conference was inaccessible too. The train journey would have triggered a meltdown before he’d arrived. The huge crowd at the venue would have brought about a sensory overload. Steven prefers talking to listening but he would have had nothing to say. He wouldn’t be joining the call to ” give us a voice”.
In a way that’s okay. Its not his arena. He can claim “Here I Am” in other places. So possibly, my unease is all about me?
I bumped into Mark Brown and we bunked off to the bar at the adjacent hotel and played with the idea of an alternative learning disability conference where Steven and his peers could have a voice.
Without a T shirt.