Three things. Bear with me as I try to knit them together.
I got some sort of news from the hospital today. Needless to say, I had to phone them; they didn’t phone me. Today seemed a good day to chase them up as it was a fortnight ago today that the secretary promised to “escalate” my scan results. They outsource all their out patient scans to a private company so that generated another layer of bureaucratic non action. Anyway, the results are in. Liver is okay. No sign of gall stones. But “something is showing up” in my bladder. I had to go for more blood tests this afternoon. The consultants will have their meeting next Tuesday when my case will be discussed. I’ll then be notified of “the plan”. Probably, if I chase them up. My bladder may be showing up something but this whole process is showing up something too. I’m not a human being. I’m reference number P901263. It’s life and death to me. It’s a job to everyone else. The piece of paper I took to the blood department revealed nothing human about me beyond my name. The nurse commented on my “lovely veins”. That’s what I am. Can it realistically be anything else?
Today the government issued their response to the LEDER review into the premature deaths of people with autism and/or learning disabilities. Here is the link: (Don’t worry if you nod off halfway through).
It’s pretty underwhelming. More consultations. More dates, two years ahead, for the next stage of the process to happen. Talk of considering mandatory training for all staff in NHS. Mencap being given airtime to puff their plumage. They’ve been lauding the training proposal all over social media today presumably with one eye on a juicy contract to provide that training. The voice of the lucrative learning disability industry. I was invited on to a radio programme this afternoon to discuss the government’s announcement. I couldn’t do it. I couldn’t be involved in another discussion of “complex needs” or “this difficult client group”. I couldn’t say the same thing I’m always saying (Don’t worry. I see the irony of that sentence. I’m forever saying the same fucking thing in this blog). The review can’t achieve anything unless it finds a way to see the people it’s serving as human beings. And as important as death reviews are, they have to give regard to the peoples’ lives. Normal, messy, adventurous human lives.
But can it realistically be anything else than more consultations, more plans, more action groups, more pledges, more transformation?
I’m in demand at the moment. I’ve been asked to write a piece about the government’s proposed Liberty Protection Scheme. I haven’t said yes or no yet but I don’t think I’ve got anything new to say. DoLS have become a huge part of the Lucrative Learning Disabilities Industry and I don’t see the new LPS changing that. Reading the proposals, it’s hard to see that they’re about human beings. The bureaucracy is woven into the proposals and that well and truly trumps the human. I can’t debate the proposals on social media because for me it’s not an academic discourse. It’s not about a system, good or bad. It’s about Steven going swimming. I’m scared about “necessary and proportionate” replacing “best interests” because that further dehumanises an already non human group. The bottom line is that I cannot find a space within the debate to talk about human beings living normal lives.
But can it realistically be any different?
I’ve done it. I’ve been there too. 40 years ago I worked for the DHSS. When I worked on the reception desk, I saw the human. When I visited people in their own homes, I saw a human. But when I was sitting at my desk assessing a new claim, I mechanically processed the form that said: “SP. UE. 2Ds. CT. SICB. PA”. I didn’t even register her name. She was just claimant 19634.
It could be different.
It’s less than two weeks until the start of the online Rightful Lives exhibition. Despite the early criticism thrown at the exhibition, I’m amazed at how collaborative the project has turned out to be. Equal contributions from disabled and non disabled people, sitting next to each other in the conference display cases. No fanfares. No patronising differentiations. Just an exciting mish mash of people stepping up to the plate. I want to know what the visitors to the exhibition think and feel. I want to lock the doors until they’ve written their essays about how the exhibition will inform them. I know that’s ridiculously arrogant but I’m not bothered. I want to ask people, “When you look at the exhibits from Jack Moore, or Mikey Brown, what do you see?” Of course the exhibition won’t change the world. It’s just an unusual invitation to be a guest in the lives of some people who don’t normally get guests. I’d just like it to prompt visitors to remember something about a human they’ve just seen.
Trouble is, you can’t go on a radio programme or write a journal piece where your take home message is “Just see the fucking human being”. It ain’t sexy enough. An anecdote about Steven’s relationship with Sybil Fawlty or a story about my hospital (non) adventure is good for a blog but it doesn’t cut the mustard in a wider audience. I don’t speak the Mencap language. And because of that, the door is wide open for more focus groups consulting to their hearts content, with a vague promise that something may bear fruit in 2021.