So, the government has refused to set up a review board to investigate the 1,200 premature deaths of learning disabled people a year. Instead, a set of recommendations have been made. In the House of Commons, a week after LB died, Norman Lamb said a priority area for further progress was ‘giving greater voice and power to people with learning disabilities and their local communities to develop services for everyone, including those in vulnerable or marginalised groups’. What a load of old bollocks.
As I’ve probably banged on about before, I can’t stand this ‘give people voice’ crap. It’s so patronising and offensive it makes my ears weep. People have voices (or other ways of communicating). They don’t need to be given them. The problems here don’t lie with learning disabled people not having ‘voices’. They lie with people not listening. Not understanding. And not caring. The suggested priority of increasing personal budgets to enable people to buy their own care is as good as useless if effective care is not available.
None of the recommendations set out in the government’s response to the confidential enquiry would have prevented LB’s death. He died because he was treated without care or thought. Both by individuals and a system in which non care, underpinned by a bureaucratic monster of (non) care plans and tick boxes, is the default position for learning disabled people. I don’t suppose that this jumble of words/jargon organised into a set of ‘recommendations’ will translate into any real change in the lives of learning disabled people. Guidelines or recommendations are pretty meaningless. The pathologist doing LB’s autopsy failed to followed the Royal College of Pathologists’ guidelines for patients with epilepsy. When I challenged this (yes, the space of grief and grieving in the case of the unexpected death of a young, learning disabled person has a peculiarly horrific landscape), I was told that these were ‘just guidelines’ which didn’t need to be followed. Eh? Guidelines that state “It is essential that…”?
I don’t think people will really start to care properly until they see learning disabled people as full and valued members of society. At a micro level, LB was valued. There has been an enormous response to his death which has been a source of some comfort. People seem genuinely upset and angered by what happened to him. A happening in which he had no ‘choice’ or ‘voice’, or other crap like that. This upset and anger has come about because people got to know him as a person, as a funny young man who had a refreshing approach to life. As one person wrote to me;
Kids like LB don’t feature in Hollywood movies or magazines. And unfortunately most of us never have the opportunity to get to know them. When I was a child, I remember being afraid of my neighbour’s son, because he was different. He’d rock back and forth and mumble to himself. I was scared of being near him. I was uncomfortable, I didn’t know what to do. I tried my best to avoid him. Humans are afraid of what we don’t know. And fear leads to cold and inhumane actions. We distance ourselves. We worry how we might be perceived by others around us if we engage with those who are different. Now, as an adult I look back and wish I could explain to my younger self. I feel far more comfortable around people who are ‘different’, I no longer feel afraid. LB’s wonderful life and your story of it, had helped me along that path. I hope it will do so for many other people. […] I promise that I will speak to people like LB when I meet them on the bus. I promise I won’t shy away, feel afraid or embarrassed. I promise I won’t give a toss what others might think.
People said for years I should write about LB; he was such a hilarious dude. I started this blog partly as a way of recording these funny stories. I didn’t anticipate it would be widely read. Or that it would take such a terrible, terrible direction. But writing is a large part of my job anyway. Not every dude like LB will have someone to write their story (if they can’t do it themselves). We need to find other ways of making people care. Of accepting and celebrating learning disabled people as fully human. And then maybe the government wouldn’t baulk at the ‘cost’ of setting up a review board to investigate how and why these deaths are occurring. But then, of course, they probably wouldn’t happen with such regularity.