We Don’t Need No Transformation
Somebody asked me last week if I felt I’d achieved the aims of this blog and whether I forsaw a time when I’d no longer write it. It certainly got me thinking! The main reason I started the blog, completely selfishly, was because I enjoy writing. The other reason was that I was still hurting from the way Hillingdon presented Steven to the world during the court case. Even though I have no idea who the world is, I couldn’t bear the idea that the world would see such a negative, one dimensional picture of the great guy I share my life with.
So I determined to document all the other stuff that makes up our life. I know I’m biased but I wanted to show the unique, funny, imaginative, stoic chap that I encounter every day. I don’t think I’ve ever claimed to be painting a picture of the autistic – just a picture of a loving, quirky, messy life. Because the scars of 2010 run so very deep, I don’t think I’ll ever believe I’ve succeeded in that mission.
As we’re trapped in so many social care systems, I continue to despair about the consequences of that entrapment. There is so much that I consciously decide not to engage with in order to preserve my sanity. For example, I try to go nowhere near anything claiming to be about “transforming lives”. For starters transformation is a ludicrous, patronising claim. And it is ridiculously up its own arse as to suppose that people’s lives are so wretched, they need the input of a transformer to save them from their hellhole. Whenever, I read anything about transformation, it sounds like my idea of a hellhole.
Yesterday, I broke my rule and clicked on a link that took me to the latest NHS vanguard/schamguard/shitguard project. Led by the Chief Transformation Officer, it’s another ego driven ” let’s redesign care” concordat. Click on the link and have a look at their assembly of “experts”. See if you can make a word of sense of their ” Starter for 10″ challenge. (https://nhsiq.crowdicity.com/blogpost/160700) I don’t understand the language but then I would never be invited to be an expert in the kind of life that requires a utility belted transformer. One thing I do know is that what they describe is as about as far away from mine and Steven’s life as it is possible to get. Thankfully. Because Steven doesn’t want, or need his life transformed.
Over the past seven weeks, Steven has added a new element to his life. His life hasn’t been transformed but it has a new, interesting aspect to it. He has become a DJ. For those who have missed it, Steven is the now the host of the Steven Neary Massive Good Songs Radio Station. (https://stevennearysgoodmusicstation.wordpress.com/) It came about after lots of people expressed fascination over his musical taste after several stories I’ve told in this blog. It’s brought about a whole new routine. During the week, Steven will think of the 10 songs he wants to present. On Saturday afternoon, we’ll dig out the 10 songs on YouTube. After he’s gone to bed on Saturday, I write the links to the songs and try and match the songs with some of his favourite stories. On Sunday afternoon, I help him cut and paste the links from YouTube into his radio station blog. And on his way to the bathroom on Monday morning, he comes into my room and presses “publish”. Steven Neary is on air. Each programme is getting between 250/350 views.
It’s also brought about a new nighttime change. Steven keeps sending me off to bed before him. Then he has half an hour on the sofa with his IPad, going through his previous shows. I’m not sure what he’s experiencing in the moment. I’m pretty sure its not pride. He doesn’t really get the reach of his programme. I think he just likes all these favourite songs in the one place.
People build their own lives. They might need some support to do so. They don’t need the input of a transformation expert though.
From → Social Care