Today i observed that I do best when I am ‘taken’ to do things. Rather than doing things ‘with’ someone.
It’s a subtle difference but important.
Taken means the person supporting me is taking a leading role. They are making the larger decisions and I am following along. For example, if shopping, I write the list but they decide the order in which we go around the shop, they have the trolley and often they are also the person handling the travel to and from
In essence. They are doing the shop and I am playing a part role contributing where I can. If I can’t contribute the shop still succeeds.
with someone means the person supporting me is following my lead and leaving the larger decisions to me. For example, if shopping they literally follow me and help me find things but I decide the order we visit the shops and I lead on all the decision making.
When I am with someone I am doing a shop and they are assisting. If I can’t do it. The shop fails.
"Taken" can cover a bunch of things. Shopping is the example above, but also swimming, sports, various work activities and even a few home ones too all have the concept of someone else taking the lead.
with may also turn into taken if I stop being able to lead.
For me, being taken works much much better than going with someone. However going with someone is way easier than going alone.
I think ‘taken’ is a powerful thing. However it requires trust as it is transferring control.
My friends who support me all very much take control of situations. For example, drawing me back to task if I get distracted shopping or talking me through the process of getting ready to leave the house (eg, ‘Jamie go put your shoes on’). They tend to tell me and wait for me to object. Rather than ask me explicitly for permission. If they try and be ‘polite’ (‘Jamie do you think you should put your shoes on now’) I will answer that I don’t know or get confused.
For some things it can be more literal. It’s not uncommon when I get spacey for one of my friends to just hold my hand, especially for things like crossing roads or busy places.
When I went to CSUN I held my friends hand a great deal. Even then he had to pull me out of harms many times. He saved my life at least once when I misunderstood traffic and he pulled me back after I stepped out in front of a truck.
When I am ‘taken’ I don’t loose all control. I am actively delegating. I have control of the high level (Who, What, When, Where) they mostly deal with the details of the How.
I think this is why i use the term ‘babysitter’ not ‘support worker’ or ‘PA’.
My friends and I brief the babysitter in what we need them to do. Most of what we ask them to do does put them in control of the situation. For example, prompting me to do things, lightly enforcing structure, making decisions on my behalf, this is what we need to do so that I can relax.
The goal of the time with the babysitter is for me to succeed with the tasks and to have time where I feel calm and relaxed. It’s not for me to learn the tasks. (Not yet anyway)
I am never forced to do anything, but by default I am told to do things not asked. I don’t have control during the visit, I had control when I did the planning or set the requirements.
This is interesting because it is the very opposite of how I act in my professional life where i very much tend to take a leading role.
I think this is a great example of the ‘hedgehog’ profile in action. The hedgehog profile refers to people who have very uneven skill distributions. It’s called the hedgehog profile because if you put test results on a chart it’s very spiky. With high peaks of skills in some areas and no skill at all in others.
For me, my adaptive skills (the stuff that make daily life easy) are very poor. But my logical, comprehension and technical skills are really high.
As part of my job I co-edit the guidelines from BBC digital accessibility and run the strategy and operation of a 48 person virtual team. I manage a complex workload and have code running in and have helped design systems that power almost every BBC webpage.
But in all honestly, when it comes to crossing roads, or managing the fridge it’s much much simpler to ask for help rather than waste all my spoons in places where i struggle.
At home I find stuff very very hard. All the logic in the world won’t help me decide when pasta is ‘done’ or exactly what shade of colour separates light laundry from dark. For these activities I need help, and I need that help to lead rather than follow.