An oddish thing has happened since LB died.

My bar of what is acceptable has taken a pounding.

‘Eh? What? Of course none of it was/is acceptable. Rage, rage, ragey rage… Whaddaya talking about silly?’

Mmm. If only.

The acceptance of the unacceptable is common when you’re a parent of a disabled child/adult. Well, and among commissioners, providers, health and social care professionals, support workers and so on. Particularly in the fabric of ‘learning disability provision’. The bar set so low that accepting mediocre becomes a default position. We’re almost socialised to create an ever present bag of excuses and rationalisations for non-existent, inappropriate or partial services.

Our bag steadily filled through grinding years of negativity, deficit/tragedy orientated thinking, assessments, meetings, input by (often ill informed) ‘professionals’. Through jargon laden discussions, unintelligible emails/letters/reports and of constantly being told, explicitly and implicitly, that resources were limited. There was never an imagined future for LB. The vague future bandied around was mealy mouthed, thoughtless, mediocre or worse, budget driven and set within silos of ‘available service provision’.

We didn’t accept the unacceptable without challenge.  The (implicit) response generally one of two along similar lines;

1.  ‘A lot of families have less…’
2. ‘If you demand more, some poor other buggar will end up with less‘.

And challenging the unacceptable is a cracking way of earning a pushy mama badge. A fast track to being described in reports/notes as ‘difficult’, ‘hostile’, ‘in denial’, ‘over-protective’. When dudes turn 18, especially if they enter some hellhole like a ‘treatment and assessment’ unit (yep, they’re still open for biz despite the post-Winterbourne outrage/work/reform/recommendations) p-mamas can ‘legitimately’ be obstructed, diverted, shut out, repeatedly told they’re the problem. The choice/personalisation agenda, supported by the handy misuse of the Mental Capacity Act, becomes a stick to beat these jumped up p-mamas back. Away from the dudes they’ve loved and looked after for 18 years or longer.

But what about family love, encouragement, support and care? Surely that’s an important ingredient in people’s lives even after they reach the age of 18? Mmm. Well the (often) good old family input seems to be typically minimised, missing or deleted from official records. Effectively and neatly creating a medical model of families of disabled young people. Family members pathologised, labelled as ‘the problem’ and subject to ‘cure’ (distance/removal).

Things have changed for us suddenly. And devastatingly. Clarity gained through unimaginable horror. [Bit of an oxymoron, sorry, but as ever in trying to write about this, I’m left to kick over and use words that don’t fit, that don’t work, that can’t convey what is].  A tweet mate this morning commented “I could hug you until the end of time and it would never be enough”. Yep. That works. In perfect simplicity. ‘Enough’ has pretty much disappeared from my expectations which are hovering currently at a level of ‘shit’, ‘total shit’, ‘overwhelming shit’ and let’s ‘try and beat the shit back and try and regain some semblance of ‘normal’ life even if only for a second’. Exhausting.

But the grinding, wearing, ambiguity and ‘fear,’ generated by the relentless telling of the limited resource story, the wielding of the choice stick, is now meaningless. We can look at LB’s life from a health and social care perspective and recognise the unacceptability of what he/we experienced. Ending with the most devastating unacceptability possible.

We can also reflect on over seventeen years of joy, love, hilarity, warmth apart from service provision. We can chew over and laugh out loud at memories of LB with a remarkable group of different people, family and friends, who knew him well, loved him or just knew of him. We can draw on photos, video clips, weekend news accounts, pupil of the week sheets, DVDs of school trips, blog posts, and seemingly endless memories of a remarkable dude.

Time to transform what is ‘acceptable’.