Startrekkin’ across the choice agenda

Lovely mate, M, came round yesterday. She told me how her son, her funny and engaging son, in his twenties, living in ‘independent supported living’, wasn’t happy. For various reasons largely related to choice. For example, he’d go to the supermarket, choose what to buy, then ring M in the evening to say he’d had no dinner. He hadn’t bought anything he could eat for dinner. She’d ring his support worker who would dig around in the cupboards and find pasta, cheese sauce and frozen vegetables. Again.

‘Choice’ trumping common sense or encouraging/enabling/facilitating a level of mindless engagement on the part of support staff. Either explanation crap. Either explanation completely unacceptable.

Patient choice and shared decision making is an important health policy area in the UK, with an emphasis on fully informed patients making treatment/healthcare decisions. There is recognition that the level of autonomy a patient may want, or be given, is influenced by various factors including the extent/severity of their ailment/illness, their age, social class, gender, ethnicity, sexuality and so. This nuanced consideration doesn’t transfer to learning disabled people, particularly in the social care world. If you’re learning disabled, choice is chucked at you. Prescribed from afar by policymakers both remote and removed from any understanding of what everyday life is like for this group.

Kind of hilariously, although of course it isn’t funny at all, there is no recognition that the experiences of learning disabled people are intersected by the above factors. Learning disabled people are, er, basically learning disabled people. Indistinguishable from each other in the eyes of policymakers, practitioners and probably the bulk of the British public.

So LB, once in hospital (and let’s not call this place a care home, eh?) was presented with choices on a daily basis. To see us, talk to us on the phone, go to the farm, go to Trax,  eat burgers, go to meetings, and so on. This emphasis didn’t involve any consideration of whether LB;

  • wanted to make choices
  • was able to make choices
  • was helped in any way to understand the difference between the various choices and the implications of the choices made

There is no apparent concern over whether enough information has been presented in a particular form to enable informed decision making in the ‘choice space’ for dudes like LB. Hell no. Just good old fashioned choice: ‘Do you want to do x or y, or x or nothing?’ But not z which you ain’t allowed to do because we don’t have the resources, staff or inclination to let you.

LB did consistently make a choice. He chose to go home. But that option wasn’t available to him. Because, as I relentlessly keep banging on, choice isn’t really choice for dudes like LB. It’s choice Jim, but not as we know it.

A total fucking charade.


3 thoughts on “Startrekkin’ across the choice agenda

  1. This works along lots of levels. I left my eldest (25 years before he was diagnosed) with a childminder who all up for ‘choice’. I learned THEN that choice is what is presented. I’d get home from work and he’d be in pyjamas because she’d asked if him if he’d like to get dressed. He said ‘no’. Any bloody rocket scientist (which would clearly have been me) would have said ‘Go and choose which clothes to wear.’ That’s a proper choice.

    Going home is another proper choice.

  2. Choice doesnt exist for people with a learning disability. “Accessing the Community” is a favourite line uttered by Social Services. Our son hides his socks and shoes to show he doesnt want to access anything thanks all the same.
    Result, care staff take him in the car to go somewhere for a walk, son kicks off, bites staff, more medication, eventually resulting in a seizure. First ever at the age of 28.
    Read a quote somewhere form an enlightened bod, “come on, get on the minibus were going horse riding, everyone with a LD likes horse riding”

  3. Well, the choice to choose not to certainly doesn’t exist. My daughter hides her shoes, her bus pass and if at all possible will refuse to get out of bed – a fairly clear indication of her choice not to be herded into what is available one might think.

    It is the idea that all people with LD are the same and want the same things that drives me mad. I was very keen that my daughter should be able to access some form of education, but after her umpteenth unimaginative Life Skills course, I had to admit defeat.

    It doesn’t have to be like this. LD or not, they are still individuals, often with more wit and imagination than those presenting the choices.

    What happened to LB is savagely wrong, and should not be shrugged off.

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