It’s been five days since the partnerships of providers who will be involved in the Oliver McGowan Mandatory Training for Autism & Learning Disability Awareness were announced. The response on social media has been intense, questioning and ongoing. I’ve tried to keep out of things because I’m acutely aware that I will never be on the receiving end of the skills/attitudes that are delivered by the training. Plenty of people who have been commenting have been on the receiving end (i.e. have been inpatients in ATUs and other hospital services) or are in fear of what might happen to them if they ever do find themselves in such an environment. These are the voices I am most interested in; not the families, or the allies or the professional organisations. These are the voices from the coal face.
Watching from the touchlines has been utterly depressing. I’ve felt shame, guilt, anger that whilst a tiny few have been engaged with, but only to criticise them for their approach, the vast majority of people who have asked questions or expressed concerns have been totally ignored. Nothing. It’s as if they hadn’t spoken. This doesn’t augur well. It feels that something is being set up from the outset that is completely at odds with the stated aim of the training project: that autistic people and people with learning disabilities will be treated with respect, humanity and as rightful individuals in their encounters with the NHS. I have seen scant evidence of that over the past few days. Quite the contrary. Questions and concerns have been dismissed as “hatred”, “vitriol”, “bullying”. One lovely chap asked a series of (in my eyes) very polite, relevant questions and suddenly found himself labelled as an abuser of women. I’m not sure what is worse: hostility or complete silence. They both give the same message though – you are not worthy enough to be engaged with.
I’ve had quite a few conversations with friends, trying to understand what is going on here. I think Sara Ryan shook the truth stick in exactly the right places in her blog on the subject and I’m not going to cover the ground that she has brilliantly covered:
I’ve still not worked out why the defensiveness has existed and been so hostile. I’m going to go off at a tangent here because a memory from 1993 popped up last night and feels pertinent. At the time, I was the training officer within the Housing Benefits department for a local authority. One day, I was asked to run a week long course for all the clerical assistants that wanted to take part. The clerical assistants were the lowest grade workers in the department and their duties consisted mainly of filing, post linking and photocopying. The plan was to devote a week with them to teaching them the role of the Clerical Officer (one grade up from them). It was seen, I guess, as something that they might find motivational. I took the order at face value and did a truncated version of the induction course that the clerical officers would normally receive. A couple of people chose not to attend, but those that did had a whale of a time and I felt chuffed to be part of something that appeared respectful and in good faith. On the penultimate day of the course, I was surprised to be pulled out of the course for half an hour and was called into the weekly management meeting. I was informed that there were currently three clerical officer vacancies and that I was to get all the trainees to sit a test on the last day and the three who came top would be offered a temporary upgrading. There was a rub. I wasn’t allowed to tell them this until after the test. I don’t know why, but it immediately spoiled the relationship we had built up over the week. I was in the know of something crucial to them, but not permitted to let them in on it. It is to my eternal shame that I went along with what I was ordered to do. The outcome was beastly. The delegates felt let down. They felt used. They felt their usual irrelevance was further cemented. I vowed after that shitshow never to put myself in that position again.
Over the past few years, I’ve been to a handful of meetings with the great and the good: NHSE, The Department of Health, the CQC. They are not my natural arenas. In every single meeting I’ve attended either with LBBill, Rightful Lives, 7 Days of Action, we (the non professionals) are let into a secret. A big secret that will have big implications to the people we engage with. Once the secret is out, we are then told: “But if you could keep that under your hat for the time being…” Every single meeting I’ve attended, the same script has played out at some point. And inevitably, I sit there thinking, “Shit. I’ve compromised myself. I’m now expected to have conversations with friends and allies whilst knowing something crucial that they don’t.” It’s been over two years since I last put myself in that position and I’m never going to again. Things like my integrity and relationships are too important to jeopardize by being caught up in a power game.
Because that’s what it is; a power game. I think that is partly what has been played out over the past few days. Sometimes intentional, sometimes unconsciously. I think some people have got off on it and milked it for all it’s worth; I think others have been deeply embarrassed by being caught up in it.
That’s my take, anyway. Not that it matters much, because the original issue raised in this post still glaringly and painfully exists – autistic people and those with learning disabilities are practically invisible in this process. Sadly, in some of the exchanges, it was worse than that. Real scorn and disgust was shown to people genuinely being themselves and taking the incredibly brave step of expressing their fears on a huge public platform.
I like to end posts like this with at least the sniff of a solution. This is one of those days when I haven’t got one. Except the obvious. All those people who think they have the answers and the power to step down and make way for people who will be immediately affected by the training.
Damn. I’ve just been shat on by another of those flying pigs.
Incredible. My sister has just text me. She has been blocked in the last hour on Twitter by the person who has “single handedly” led the training project. My sister isn’t autistic, but she is a concerned Aunt and lived through the experience of Steven being away, so is naturally interested in how the training is panning out. Quite a few people have reported being blocked after asking questions/raising concerns. Selective ears?