Tag Archives: rules

Legacy, the long haul and mixing up the plastics

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Having a major clear out (again). Stuff in the loft in our old house packed up, moved up north (after several months in storage) and stored in a big old cupboard here in Buxton for four more years.

This work is inevitably charged. Small stories fallen into cardboard box cracks, separate from curated childhood memories. Lego pieces, Playmobile accessories, torn ticket stubs, photos that didn’t make the album cut, newspaper cuttings. Unexpected chuckles, breath-stealing sadness.

It needs sorting because the sentimental value of objects, of stuff, doesn’t necessarily translate. Story/memory-making happens around and beyond things, anchoring them in time and places that aren’t always apparent.

A Chatsworth car park ticket. Peak District holiday as pups. Our dad parked on a grass verge next to a ‘No Parking’ sign the size of the house he wanted to film. He took his camera out of the boot and locked the car keys in it. Oh my childhood days. Waiting, waiting, waiting. The day derailed with awkwardness. Handstands and cartwheels. Passing drivers clearly marking the rule breach. A policeman finally pitched up with a biscuit tin of metal car keys to release us. So much more than a parking ticket.

Some stuff does speak for itself. Protest and protests. Reported, repeated dated events.

A Guardian Society piece from 2003. Donal MacIntyre arguing for a home assault law to recognise that ‘the deprivation of social contact, denial of food, medicine and care, and infliction of petty humiliations and degradations can constitute abuse and should be liable to prosecution’. He describes the newly created Commission for Social Care Inspection (CCSI) as ‘the future but unless it determinedly disassociates itself from previous passivity, then little will change’.

Prophet Donal. Pre-CQC, Winterbourne View and so much more.

Letters I’d forgotten writing.

Hey, Anneliese Dodds MP, what’s going on with the woeful progress of the Leder programme? (Always receipts when you throw nothing away). Prof Stephen Powis, NHS England, typed the type here. Delays, failings and always more to do.

Where’s Prof Powis now? Does he remember writing these words, defending the indefensible, and putting his name to them? What remains of the Leder review seven years on is the stuff of dogs dinners.

Finally, our Michael. Michael Edwards. President of My Life My Choice. An article I cut out and kept when Connor was walking on Welsh beaches without an inspectorate, quality, standards commission care in the world.

Michael tells the story about sorting plastics in an Oxford centre.

I marked these sections back in the day before I met Michael and My Life My Choice. Reading about the mixing up of plastics cut me to the core before I had the words or even thoughts to make sense of it. Oddly, rightly, this article was instrumental in me getting in touch with My Life My Choice a few years later when I had my first research job. Eventually developing a relationship of friendships, love, laughter, care, commitment, collaboration and activism. Something I treasure beyond words.

It doesn’t take much to join the dots between these stories plotted from randomly stored stuff. People involved/implicated and then absent. Exposing, reporting, ‘leading’, deflecting with little or no sustained thought for the people and their families harmed by these enduring abuses. People who continue to resist and stand taller than that ‘no parking’ sign from back in the day.

‘Incarceration’ on a sunny day

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I’ve been trying (and failing) to make some sense of this experience. It’s too enormous. And on a sunny day like today, ‘incarceration’ is all the more painful. Of course LB isn’t ‘incarcerated’, he’s an informal patient who, in theory, can move around as he chooses. In practice, this isn’t really the case. (Although spending the day in his room watching Eddie Stobart DVDs is probably something he’d choose to do).

I was kind of delighted to read on twitter, this morning, that one of the priorities of the Care Quality Commission (CQC) is to strengthen its focus on mental health, mental capacity and learning disability. That delight was almost instantly quashed by the ‘Yeah. What. Effer’ demons. The past 16 or so years since LB was diagnosed with ________________ [fill in the current label/s depending on the year/decade/century/version of the DSM (Diagnostic and Statistical Manual of Mental Disorders). Use an extra page if necessary], nothing has really changed. The kind of things we (a group of parents of young children) tried to change in health and social care all those years ago, are being fought by a new group of parents of young children. Having just emailed LB’s care manager this evening to ask her to stop any more direct payments (DP) and take back what’s been paid into the DP bank account (above the surplus that has already been demanded back by the DP team), in order to avoid paying a fair charge for no support at all, makes me wonder if things have almost got worse in some ways.

It’s a tricky one really. The extreme situation we’ve experienced over the past few months has pushed us into some horrible spaces. The almost daily developments – good, bad and indifferent – in the various areas that revolve around being the mother of a learning disabled young man informally living at a mental health unit, are time consuming, sometimes baffling and emotional exhausting.

I’ve read, researched, written about and lived the experience of mothering a learning disabled child. This adult stuff is a whole new ballgame. One we’ve barely had a chance to absorb and think about clearly. In the same way there was never any (useful) guidance, support or advice about having a disabled child, there has been no useful guidance, support or advice about having a learning disabled adult son with mental health issues (I don’t like this phrase but dunno what’s an acceptable alternative).

This has been hard. But hey ho. The sun was shining today. There’s good stuff going on. Charlie’s Angels are fighting the fight. Rich and I are both blown away by the support and warm wishes consistently offered by family, friends, neighbours, colleagues and all sorts of other people. Some guy raved about my grey hair at the bus stop this evening. And Chunky Stan’s eye pressure in his remaining eye is pretty much back to normal. 

And we’ve arranged to meet LB in Burger King tomorrow evening with Tom. They’ve not seen each other for five weeks. Funny times.

Private public spaces

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Had an interesting discussion with a mate on Facebook last week around the ethics of taking photos of people in public places and putting ’em on a blog. She said that she wouldn’t like it if a photo of her was posted online and discussed without her knowing.

What is ‘public’ and what is ‘private’ is a chewy philosophical area. And I’m always struck by the ‘private’ activities people do in ‘public’ spaces (see below). To be honest, I was surprised and pleased to find out there are no rules about permission/consent (unless you want to use the photos for commercial purposes – slight qualifications outlined here).   Basically you can crack on happily.

This is so unlike academic research which is subjected to such scrutiny by ethics committees that it can be unproductively constraining, frustrating and time consuming. But going back to the Facebook discussion, just because there are no rules about this, should I photograph and post images of people without consent?

Well I’ve decided to set my own ethical standards in addition to those outlined in the above link;

  1. If someone wants their photo removed from this blog, I’ll remove it straightaway.
  2. If I’ve photographed someone and they would like a copy, I’ll email a high res version or send a print.

Job done. (As long as a train is considered a public space…)

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The processes that stifle

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Sometimes I crave spontaneity when negotiating social life with a crazy dude like Laughing Boy.  Sadly, the experience is usually drenched in daft rules and unhelpful bureaucracy, especially when it is to do with health, social care and education.

Take one example. I asked for a referral to an endocrinologist because I wanted to ask some questions about the chromosome disorder LB had been diagnosed with many moons ago.

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