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Choices & Red Herrings

August 3, 2014

Nice lesson on Friday. I was feeling a little sore over some of the criticism that has been leveled at the #LBBill and needed a pick up.

Steven’s support worker phoned me at 10am to let me know that Steven had decided not to go to the day centre. Apparently, he had put his shoes on and was just putting his photo of the centre on his daily picture chart when he announced that he wanted a day in. I’ve written about this place before and my usual Friday anxiety. It is the place that is run by the same people in charge of the Unit where Steven was held in 2010. There is also nothing for Steven to do there except watch the TV. That combination makes me very anxious – will he go into a meltdown because he’s bored and will that be misinterpreted by the people there? It’s the only time during his week that Steven has contact with the professionals. I know that this says more about my scars from 2010 but it feels real to me.

Later at 3pm I phoned home for my chat with Steven and the support worker was laughing. “Steven’s had a great day” he said. Having made his decision, Steven kicked off his shoes and settled down to watch the Smash Hits Party from 1999. He then made his beef sandwich for lunch. Then he got all his model figures out and acted out the entire Psychiatrists episode of Fawlty Towers. Next he made his pepperoni pizza for his tea and when I phoned he was watching the extended interview Bjorn Uvelus gave about the history of Abba. Oh, and he’d also brought in the washing from the garden. Sounded like a nice day, all scripted by Steven Neary himself.

Half an hour later, I was on the bus home and one of Steven’s old classmates got on, accompanied by two female support workers. He must have recently moved into the new supported living flats that have been built near my workplace. The bus wasn’t packed but it was very noisy – a screaming toddler and a group of “OMG HE DIDNT DID HE” teenage girls on the back seat. Steven’s mate sat down and immediately started rocking. The workers were talking to him but he just slipped into echolalia. From their conversation I could gather they were off to Tescos to buy some toilet rolls. By the time I got off the bus, the guy had his hands over his ears and his rocking had become more frantic.

It got me thinking about choice. And it’s quite simple really. When you live a life of your choosing then choices don’t become a big deal. I dont think for one moment that Steven’s mate had chosen to go shopping for toilet rolls – that’s institutional living. Someone had decided for him that he needed to do the shopping for the home. And shopping for toilet rolls has got a value so it is seen as promoting independence. Several boxes ticked. But it’s not a real choice is it? Being enabled to make a choice is not the same as kicking off your shoes and choosing to plan your whole day ahead. I think the choice thing is a red herring. Let people live a life and it happens automatically.

I hope the #LBBill can achieve that. But one thing that I can see already that is really throwing people is the simplicity of the Bill. If all these concepts that the professionals bang about like independence and choice really happen, then there will be much less for them to do. And then where would we be!


From → Social Care

  1. Sorry you had that bad day. I think when you are brave and get something out like you’ve done then you open yourself up to a lot of good and bad. That’s the brave thing about doing it. My mind is boggling about carrying the toilet rolls back. How inconvenient is that? Internet shopping is the best way for bog roll. If your day was made interesting by going to Tescos for bog roll then you are a sad person. This just shows how unimaginative and shit the support is. Funny how bog roll made me say shit later, something in that.
    Oh well I’m going to have a morning coffee and plan my day. It won’t include a trip on the bus to Tescos at all. Horrible place.

  2. I agree with what I think is your main point – not to forget the main aim of the bill and the rest will follow…..

  3. Shirley Buckley permalink

    On Friday I got the judgment from Mr Justice Charles. Martin has to stay for ever in the home no deputy no one t help. The LA have been told to considertaking out an injuction against me to stop my contact with Martin and the staff at the home. The Judge says I am wrong to say all Martin’s problems stem from his epilepsy. Martin has stopped communicating with me due to the AEd Keppra he was put on in December. I cant even type this properlyi

    • Pauline Thomas permalink

      Mark my son chose to stop using our borough’s day services in 2010. He stopped liking his day centre in 2005. He stopped liking it because the commissioner in charge was running it down by seconding staff over to the new services being set up in the borough. Things like the cafe, local paper delivering and sports venues. All things my son was unable to participate in because he was not mobile enough. The things he enjoyed doing in the day centre like pottery and woodwork were forever being abandoned to prop up the new services. In reality this meant that the people with higher needs were being sacrificed so that the borough could boast that its new flagship services were working. Unfortunately they failed to admit that they were only working for a chosen few.

      When my son was Stevens age (he is now 42) he was a happy caring and a lovely young man, and remained so until the powerful ones decided they would give him choices, give him autonomy, make him independent. All PR bullshit of course because they were the ones who were making the choices and deciding how he spent his days, and offering to take away his independence by offering him 1-1 support. He did not want 1-1 support, he wanted to be independent. He enjoyed being part of a group, most of them he knew from school. Today he is a man prone to tears and anxiety, although he still is kind he no longer wants to go anywhere but sit and listen or watch his music. The sad truth is he is not alone. There are many families like ours who are just coping and so afraid of what tomorrow will bring.


  4. anonymous permalink

    Mark very concerned that your words are now being used to shunt all away from the MCA 2005 and place the under MHA which is much harder to get your loved ones home…..

    Where the hell do we go from here???

    ‘I suggest we start with the fundamental principle that a learning disabled person should be living in their own home, whether that be with their family, on their own with support, in a small group home. It should be their choice. Anyone (especially the State) that thinks otherwise has to prove their case before a court.’

    • Quite the opposite. In my latest blog post, I say how I feel the MHA is often used to trump the MCA. The MHA scares me – the MCA gives me some hope

  5. I’m confused as well. No-one is going to argue against a “right to independent living” – the right of ALL disabled people to be able to make the same choices, good or bad, that everyone else takes for granted. But how independent is it when others are making the choices of where someone should live based on some fairly theoretical definitions of what “independence” is, and parents and concerned carers of those who make more idiosyncratic choices are marginalised and excluded?

    This is a small and specific “bill”, ideally cost neutral. Surely it could be a step in the direction of more community based provision, better long term solutions if the principle is accepted? Claire Dyer is now in what is presumably an expensive unit, “independent” of her family. Did the judge talk to her, or her parents? Does anyone think this is going to make things better for her? Surely staying closer to home with inadequate provision is less draconian than uprooting her in this way.

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