When I did my degree at Oxford Brookes I did a ‘thinking photography’ course as a floating module. I was a bit constrained in being able to turn up to the whole course, but I remember the content and loved the emphasis of turning attention from the (typical) focus of photos and smashing it up. For the coursework, I looked at family photos featuring alcohol and created a family album where the family members were the various glasses/bottles of alcohol rather than the people. There was a Baby Sham, Little Stella and Uncle Bud from memory. (It was better than it sounds…)
Stripping away family again, it’s possible to imagine LB’s life from purely health/social service service terms.
Toddler times: Got ourselves a new one here fellas… He’ll need a childhood of regular appointments, prodding, pushing and obligatory report writing. Remember make sure access to ‘specialist’ services is closely monitored by gatekeepers, hoops and delay. Talk about services even though they aren’t available (it sounds better). An example phrase? “He isn’t going to amount to much but we may be able to help more when he reaches puberty. Respite may be available though is very much in demand“.
School years: He’s growing. Time to ease off and reduce attention to school medical reviews as much as possible. Weigh him on a regular basis. And make sure any issue, or potential issue is dealt with on an arbitrary, discrete, moment by moment basis. There’s no need to develop any understanding of the patient. I repeat, there is no need to develop any understanding of the patient. It’s about containment.
Unexpected medical events: Ah. Suspected seizure activity? Don’t panic. It’s often anxiety issues with these types. Try and do the relevant tests but if inconclusive discharge and suggest star charts.
Transition: Core time for ‘problems’ to emerge. Especially with these boys. Remember. Keep your eye on the main target; a smooth, undisturbed shift into mediocre (at best) services. As much as possible, make sure expectations are low or non-existent. It makes things much easier in the long term. Eh? What was that? He was diagnosed with epilepsy eventually? Ah. Not to worry. They don’t have real epilepsy.
Crisis: Eh? Tsk. Well just ignore for now. You could chuck more direct payments his way. Eh? What was that? Oh. Well ok, admit him to STATT. He can stagnate there for the time being. What was that? The cost? Well not for that level of service. It’s known as an example of good practice outside the county (I know, I know, but who are we to question?) And anyway, it’s out the way by the ring road. Out of sight. And most patients/service users stay for months or even years. Sorted.
July 4th: Eh? What was that? Fuck. Fuck. Fuck. Fuck. Remember. We did nuffink wrong. Did you get that? We.did.nuffink.wrong.
Sara – your blogs are truly incredible. You have the ability to approach the most dire of circumstances in such a way that makes for the most compulsive reading. I truly wish that you were not having to write these under these conditions but rest assured that they read by my family avidly compassionately and with such support. It just makes us wish we had been part of them before these such tragic times!
The truth in this is what makes it unbearable…. Xxx
I know what you are saying I feel it too so terribly wrong so utterly shameful the whole systems fails and it sucks so bad xxx
I suppose there are big fat files that boil a real life down to a series of notes made by someone without any investment in love of that real person. When I teach teachers I always remind them that they are only passing through briefly but families stick. I also make sure they flex their empathy muscles by thinking ‘if this was a child of. Mine’. You did nothing wrong and everything right. L b had a great family life. Obviously. Love nicki.
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From: mydaftlife
Date: Mon, 7 Apr 2014 19:31:33 +0000
To:
ReplyTo: mydaftlife
Subject: [New post] Thinking photography and Connor at 2 5/12
sarasiobhan posted: “When I did my degree at Oxford Brookes I did a ‘thinking photography’ course as a floating module. I was a bit constrained in being able to turn up to the whole course, but I remember the content and loved the emphasis of turning attention from the (typic”