The Best Interests

My blog post yesterday, “Blowers”, got some really interesting responses. Everyone seemed to get Steven’s George Michael joke and his reaction to his own joke. I think people got that the two minute interaction between Steven and I captured the really important stuff of life.

So why don’t people in Service Land get this? If that story had been fed through the 2010 PBS filter it would have come out labelled as “inappropriate” and would occupy a negative framing. Sadly, I think if it had been understood, it would have been translated into that bizarre social care language that sucks all the life out of anything that provides us with meaning. Katherine Runswick Cole tweeted about her family day out to look at pylons and asked whether that activity would have been viewed the same way. I suspect that it would have been. Hard to see what “measurable outcomes” on a care plan could be achieved by looking at pylons.

What troubles me is that I detect another form of discrimination going on here. I think that since the birth of reality TV where we are all encouraged to vote and pass judgement on someone’s character or their destiny, we have all become much more judgemental. Someone can be nominated for eviction on Big Brother because they are a little bit different and their fate becomes the topic of much water cooler discussion. But by and large in our real lives we can be judgemental of someone without it having major consequences. Not in the social care world. If talking about Fawlty Towers for 30 minutes is deemed by a behaviourist as inappropriate, you could end up losing your liberty. Having a challenging behaviour scrutinise your relationships with a fine tooth comb can be very challenging. Steven had spent 19 years of his life, greeting me by kissing my head. Suddenly, that became dangerous. That embrace was logged as challenging behaviour and put his future family life at risk. Things like love, fun, interests really challenge the challenging behaviour crowd. I feel it is especially dangerous because it can easily become a destructive weapon of power. We may tut about the chap in front of us in the queue at Morrisons but we can’t change him. We can’t legitimise our judgement of him. But we can with learning disabled people. And I suspect that learning disabled people receive the full pelt of judgements that are bottled up in all other areas of a professional’s life.

I’m typing this on the train to Northampton. We’ve just pulled out of a station and at the end of the platform were about half a dozen people trainspotting. Whatever you may feel about the pursuit of trainspotting, you would notice them going about their business, possibly pass judgement but two minutes later, they will be gone from your head. But if those trainspotters had a learning disability, their activity will be poured over by a whole multi disciplinary team of experts. Some of that team would decide its worth by totting up the measurable outcomes. A funding Panel would chew it over to see if it merited paying for a support worker’s time. The PBS people would draw up a risk management plan for the day out. Circles of Support would be formed. A care planner would look into how trainspotting fares in the person centred plan. Poof. All life gone.

In my counselling work, there’s one thing I love doing with clients. I like to get them talking about their interests. Most people come for counselling because a part of themselves has died. Or never been allowed to be born. One thing I know is that when you get people talking about their interests, they come alive. It doesn’t matter what the interest is. Sometimes people will talk about stuff that I know nothing about. Or have never been the slightest bit interested in. It doesn’t matter. I am usually on the edge of my seat. Interests are what makes us interesting. They bring us alive because they release a creative part of ourselves. They give us some meaning to our lives. We learn to live.

Perhaps that is what is so challenging to the experts. A person who is really living might not need their input.


5 thoughts on “The Best Interests”

  1. I think, basically, we have now generally in the Country, the us and them.

    The assessors, and the assessed.

    The assessors, try to justify their existence, and continually control the assessed, as is their function, by nonsense, which we should not need to feed into, as objectively, it can be shown to be nonsense.

    The elephant in the room is, best interests.

    Whatever the state, ie the assessors says is in a person’s best interests, it is.

    We cannot argue, because we have no power, whatsoever, all rights, and any accountability by them, has been removed.

    No one could possibly believe, that it is in the best interests of Thomas, to be taken away , medicated and tortured, nor Ti TO BE RESTRAINED 5 TIMES a day, if all this had happened at home the parents would be in jail.

    Instead, the perpetrators are paid £3,500 without the drug bill.

    Meanwhile, you kiss your son’s head, and are criticised.

    They also always ignore, the very thing that they should be an expert on, if that is possible- autism

    Which is illegal under Autism Act, but these are only guidelines for service provision, and how would you get judicial review of this service?

  2. Yes, the ‘so called’ experts have got it so wrong! We were told by our LA’s ‘expert team’ that we should discourage our (then undiagnosed) autistic son from being ‘obsessively’ interested in super hero’s, Take That & Eddie Stobbart and he should quickly be bought back to reality! As you can imagine this resulted in a lot of stress as he wasn’t able to communicate in a way that was important to him! Thank goodness we were able to gain more knowledge despite our local ‘experts’. Without knowledge, understanding and a (privately arranged) autism diagnosis it is probable that our son would have been detained indefinitely. Regardless of the of the amount of growing information available on autism our LA is reluctant to acknowledge it or have anyone with any training other than a 3 hour (we know it all course!). It is so sad and so wrong that our sons/daughters lives can be obliterated through the ignorance and possible deliberate misunderstanding of our ‘so called’ experts whom we mistakenly believe are there to help us. It’s a tough lesson to learn!!!

  3. Yes. If you are a paremt of someone with autism you have already agonised quite enough about this. How much do or can I let my kid have interactions which are pretty well all ‘broadcast’, maybe with rigid set lines for others? Can I encourage spontaneous stuff? How? Can I get into the obsession and help make new stuff with it such as jokes? He loves this,but I have to bring this to a close or I won’t get out of the house? Etc etc.
    We all factor the obsessions in to the days plans. If I want to leave the house but my son has started to watch so and so I am not getting out before so and so has finished and been discussed. The most wonderful thing for him is to have someone listen to his preoccupation, rather than try to shut him up or look glazed.
    Any poorly trained fool who assumes it’s a simple matter of discouraging obsessions has no idea about autism.They have no idea that the obsessions bring happiness and calm to someone with autism and can be one of their very few only coping strategies. They have no idea that they can’t just be removed (to produce, -ta dah -a non autistic person).
    If someone neurotypical has an obsession the only way it can be changed in therapy is if the person identifies it as an obsession, can see that it is has undesirable effects for them or others and is motivated to work on it. Anybody who imagines it’s the same for someone with ASD is dangerously ignorant.
    Mark I have also been terribly slated in reports.For not sufficiently encouraging my son to celebrate his autism, AND for allowing him to indulge his obsession too much. In the same report!

  4. Wonder why I missed this? As I run the Pylon Appreciation Society and many of our members are neuro diverse.

    I can completely understand a day trip to look at pylons. Indeed I’ve done quite a few of them!

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