Well I ain’t a philosopher. And other than my now fairly lengthy adoration of all things Eva Kittay, I haven’t read much ‘philosophical’ stuff. I probably should. But I keep reflecting on the nature of the health and social care emphasis on choice and agency and what this really means for the life chances, opportunities and aspirations of learning disabled people. Alan Roulstone, at the recent disability conference in Finland [sigh], challenged the notion that complete self determination/independence for learning disabled people is either widespread or desirable. I’m sure there is a shedload of research about this but I’m chucking my hat into the ‘it ain’t necessarily desirable’ pot based on good old fashioned experience.
We’ve finished sorting through LB’s belongings. A beyond sad task.
His choices shine through here, in some ways. The consistency of these choices over so many years made it a particularly heart and gut wrenching task. There was so much well worn, familiar and much loved stuff. Dating back to when he was a pup even. And then more of the same. Different colours, newer versions. Not really replacing the earlier stuff (buses, lorries, books) but more a manifestation of normative present giving rituals that meant gifts were given, whether LB wanted them or not. Er, agency anyone? What does this really mean?
Our strategy for sorting the ‘special’ stuff to be stored in the chest in the bedroom, was to select the most used and well worn items. We could have picked these blindfolded. Family and friends were attuned to what LB loved, what he liked and what he wanted. He was surrounded by stuff that reflected his interests, his delights, his life. This was not only purchased objects – myriad buses/lorries, Eddie Stobart memorabilia, books and DVDs – but there was a generosity of time, thought and patience invested in making things or doing things for LB. Cards, photos and mermaid related stuff from school, customised bus tickets and drawings by his siblings and friends.
A die cast lorry transformed into Lightning off Cars. A cardboard box version of The Mighty Boosh boutique shop for his Vince and Howard figures. Carefully drawn pictures of various lorries, buses and prisons for him to colour in meticulously. An 18th birthday hat fashioned by Charlie’s Angels at school. The notebooks he filled with drawings and figures with words/additional figures drawn by others. Contributions that made LB smile. He delighted in people joining him in these spaces. Pure enjoyment.
I think the emphasis on choice and agency is a bit misplaced really. Particularly when it ends up being a divisive tool. Either explicitly used to distance people from their families, or when this happens unintentionally.
It strikes me that the core ingredients for a ‘good life’ for learning disabled people are family, friends, (enlightened?) understanding and familiarity, aspiration, imagination and a good dose of collective giving/caring. Policy statements/prescriptions about the importance of choice carelessly transmitted to untrained, poorly paid and unsupported staff ain’t helpful. And could generate space for misinterpretation, misunderstanding and/or abuse. I wonder if policy makers should ditch the jargon and acronyms, shake off the dusty old coat of worn out, abstract discussions that bear no resemblance to the lives people are actually living, and go back to basics.