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We Don’t Need No Transformation

November 17, 2015

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.

 

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From → Social Care

6 Comments
  1. Love Steven’s blog, I’ll start following that too!

  2. meg permalink

    This is exactly the change in my work I detest most. It was once about getting to know someone, finding out THEIR likes and dislikes and THEIR aspirations, THEIR wants and of course meeting THEIR needs. More and more, as the purse strings tighten enough to strangle any chance of meeting individual’s needs to attain these likes, aspirations and wants the job has becone about meeting the needs – of the job. Of managing to get there to ‘support’ someone for some of their allotted hours (now having to use some of this time for travel), of using a portion of that time to document that you have been there and – well that’s about it really. I actually cannot recall the last time I supported a client to ‘access the community’ – do something/go somewhere they want to do/go. Unless it was a medical appointment, a review (purely an exersise in support hours slashing now) or to the local shops – and even that is hard to fit in now! These highly paid experts can talk all the fancy talk but they never walk the walk and nor I am afraid do we, anymore.

  3. Self-transformation rules!!

  4. Pauline Thomas permalink

    Mark I can only imagine that Steven now feels that he has got something to offer other people. (his music). Instead of being done to he is now the giver. A wonderful feeling if you have spent a lot of your time on the receiving end of someone else’s giving.

    ‘Tell them what I can do’ my son said to us after yet another review where all his ‘can’t dos’ were listed and commented on. He was so hurt by all the negativity. We all need to feel a useful part of society, so sad that sometimes it can not be possible for people in care.

  5. Sally permalink

    What a fantastic interesting and worthwhile fthing for Steven to do and how exactly right Mark , is your level of assistance to make it possible. Not too much so it becomes your thing and he withdraws, not so little that he can’t manage and gives up. Just the right amount. And you know what sort of help is needed because you know your son and crucially you are around to keep an eye on how the project is going!
    My heart needs for Pauline’s son asking for them, to list what he can do. I don’t think any of us could cope with constantly being told what we are bad at. I certainly couldn’t cope with hour after hour of having every flaw or difficulty pointed out, and would feel humiliated, depressed and helpless after years of the approach.
    This does not mean we turn into Pollyanna and act as if any problems aren’t there. That way lies the new social care slant of simply ignoring disability. I think it means that we celebrate and encourage what the person wants to do and look at ways to help them do it. Encouraging, modifying, teaching,

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