What time did you get up this morning; what did you have for breakfast and what have you eaten (or are planning) for later meals? What about how you might spend your next bit of time off or leisure time? Do you feel you have quite a bit of choice, at least over these everyday decisions?
What time did you get up this morning; what did you have for breakfast and what have you eaten (or are planning) for later meals? What about how you might spend your next bit of time off or leisure time? Do you feel you have quite a bit of choice, at least over these everyday decisions?
The people we spoke to in the Making Positive Moves study had spent time living in hospital settings, where they weren’t always ‘allowed’ to do certain things, and couldn’t always do what they wanted. As one participant, TJ, said:
You had no control over anything, and it’s always all the decisions are made for you, where you have to ask permission for stuff.…. it is a pretty much not a nice situation to be in.
In hospital people often got used to other (more powerful) people making the rules – these restrictions often became a way of life, and when they moved out it was hard to shake off some of these habits. TJ went on to add:
[Now in the community] I don’t have to [tell staff where I am going tomorrow], it’s more – it’s more to do with it’s just a, er, a way that I’ve always done things for the last, you know, few years or whatever, you know?
Pamela discussed how, when she first moved out, she asked for staff assurances and permission a lot, and she still asked for their advice now.
Interviewer: Was it easy to choose the paint and wallpaper, or was it hard?
Pamela: It was hard.
Interviewer: How come?
Pamela: Because I couldn’t – I didn’t do it before where I was all right, so I had to ask the staff if, you know, this is nice, you know, do you like this? And they said it’s up to you, and I said I just want your advice.
It is interesting to wonder whether this is a long-lasting legacy of being ‘institutionalised’ for decades in mental health hospitals; or a normal process of reassurance-seeking, which we might all want from others from time to time. Or perhaps it’s a mix of both. After all, very few of us make decisions about new furniture or wall colours without any input at all from others; even if we live alone we might ask for the thoughts of friends and family.
Another participant spoke about the role that staff take, in having a role similar to family in providing reassurances about her choices:
Sabrina: I would like to have my own children. My own partner. The thing is, I want to… have a partner first, and then let them get to know my family and my support, because it’s, it’s important to know that support think he’s, he’s okay.
Again, many people would seek the support and approval of close companions when getting into a serious relationship. It just may be that, with perhaps fewer opportunities for friendships, that people with learning disabilities may end up getting these from paid staff alongside friends and family.
Sabrina spoke about the role a member of staff took on an everyday decision – but was this supporting or controlling her choice?
Like on Monday, when I went with… I went after shopping, and I picked up a bag of sweets, and, er, [Support staff member] said, do you really need it? And I said, no, and I put it back. ….. I like to know where I am. So I know if I’m allowed to buy that, then that’s fine…. If I’m not allowed to buy that, then I know that it’s not, it’s fine as well….So it’s nice to have not a lot of choice, because they help me, like, sort out what food I’m allowed. What’s the reason why I do it, is they do the food, the whole week’s food, and then if I have anything left over, I could buy a drink or something, and that’s it.
Sabrina spoke at other points about difficulties with budgeting, and wanting help from staff to make decisions about her money. This quote indicates that she appreciated when staff stopped her spending unnecessary money, as it then helped her to save up for a drink later on. However, interestingly in this example, Sabrina did not seek help with a decision, but it was given, unrequested, from staff. This is further underlined by her descriptions of being “allowed” to buy things or not, which make her seem somewhat a passive follower of rules rather than someone with free choice. It exposes the tension for staff, between offering choices to people, but also navigating their duty of care in keeping people safe and well.
Chris described eloquently the differences he has noticed between the teams in hospital and in the community in how they support him to make decisions:
Chris: When I asked advice, when I was in hospital, they would say, no. No, you’re not allowed to do that. No. No. No, you can’t do this, you can’t do that. In here, erm, they have said to me, is that wise for you to do this? Or is it wise to do the – do that? And think of the logic of if you – if you want to do that.
He describes, therefore, how staff aim to scaffold his decision-making process in a way that he is still in control of the overall choice, but with support from others, to think through the consequences and outcomes that he might not have otherwise thought of.
Making choices and decisions, therefore, is by no means a simple process! Our participants had much more to say about how they deal with the confusing world of choices, big and small. This blog shines a light on one aspect, of getting used to making more choices, and the role that those around them play in this process.
We would love to hear your thoughts and comments – get in touch.
Further suggested reading: Smyth, C. M., & Bell, D. (2006). From biscuits to boyfriends: the ramifications of choice for people with learning disabilities. British Journal of Learning Disabilities, 34(4), 227.
