“No, maybe”. And ‘adulthood’

More struggles over adulthood, rights and capacity… though I’m really trying. Honestly.

LB was due to go to the farm yesterday. Taken straight from the unit, bypassing school, to work with Sue and his classmates. When he was told to get ready, he didn’t look keen so he was asked if he wanted to go. “No, maybe” was the answer. There followed a hilarious conversation where he was asked various questions about whether he liked the farm and what he wanted to do, with a lot of “no, maybe” answers. It was finally established that he didn’t want to go to the farm and would prefer to go for a second choice; a drive and a long walk. His teacher was called and she asked to speak to him (love her). He didn’t budge. He later made it clear he didn’t want to do the drive/walk option either and stayed in his room. Whose idea was it to give this dude choices???

I’ve heard a lot of stories like this to do with learning disabled people making choices (usually from parents). It’s a tough one. I know, I KNOW, I KNOW that people should be able to make decisions about what they want to do. But LB will always choose to stay in his room hanging out “self occcupying” if he’s given that choice.

I think my struggle is around two overlapping things;

    1. LB isn’t making a decision in a vacuum; the choices offered, the way in which they’re presented in terms of the language used and the way it’s structured, the relationship between LB and the choice offerer, the implications of the decision made for that person, LB (and others) all feed into a complex set of interactions that can mean that the choice isn’t really a choice at all.
    2. There is a constraining kind of meta-level control always present which means that, ultimately, LB can only really decide what he’s allowed to decide. If he makes a decision that isn’t perceived to be in his best interests, the swat mental capacity team come in and stop him from making that decision.

So it’s a heavily managed and mediated, complex, uneven ‘choice’ space. I don’t know what the answer is really.  And I can’t see him ever emptying the dishwasher again.

9 thoughts on ““No, maybe”. And ‘adulthood’

  1. My mum used to complain about these things in relation to my late brother, who lost his speech and had memory problems (as well as physical disabilities) following a severe stroke in his 30’s. He was desperate to regain as much of his former life as possible (understandably), and so would often make decisions that reflected this, backed up by professionals, even though the consequences i.e. that he couldn’t manage, would fall entirely onto my (ageing) mum. As you have described, it’s an incredibly difficult issue.

    • That’s interesting. Two ‘good’ choices (without the do nothing choice) is a probably a good start but yep, I can see that things might get shaky after that. Very tricky.

  2. I have only been following your blog for a short while but would just like to say that I have so much admiration for the way you have tackled this situation. We are just embarking on the process of transition and I find the whole idea of my daughter been unable to make the decision for her self one day but by law able to the day she turns 18 quite scary. Who on earth makes these laws up – surely they have to realise that not everyone who is learning disabled can make smart choices. Good luck!

  3. I used to work as a support worker for three autistic gentleman. One of them would allways choose the last option given to him if given a choice. This was sickningly heavily abused by lazy members of staff. “What do you want to have for tea? You can have a full roast dinner, with all the trimmings OR you can have beans on toast…. oh, okay then beans on toast it is”. Then you’d read the notes and see “I offered to cook X a full roast dinner but he insisted he only wanted beans on toast”.

  4. Pingback: 107 Days: Day 32 – Recognising support | The Small Places

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