Self-direction and disability: making your own decisions

Self-direction is becoming a well-known word in the disability and mental health sector, alongside others such as choice, control, flexibility, and responsiveness. However, people being able to self-direct their lives, if they want/need support, is challenging for them as the negatively tainted lens of ‘except who’ is applied over the principle of self-direction.

Except who? Except the person who makes poor or risky decisions for themselves (by our judgment). What about the person who has been labeled as having a ‘severe intellectual and physical disability’? Or the person who has been labeled as ‘unable to communicate’? What about the person who has been stigmatized as having a ‘mental illness’?

The lens of ‘except who’ is a challenge that needs to be overcome if people are to have the lives they want and need. To do this, it’s important to explore why we apply the lens of ‘except who’ to it. But first, what does self-direction actually mean? Who is it for and why? There are a number of definitions, but the one I like the most is this: (of persons) free from external control and constraint in e.g. action and judgment.

It is not about money or ‘funding’. It is not about being so independent we have no support to help us. It is not about a system. It is about us, as complex and beautiful human beings who get to be our own person, with our own authority and our own ways of being, loving, communicating, working, playing, and deciding what is right for us—free from external control and constraint (excluding those constraints that apply to us all under the law, because it is not about us being able to do whatever we want).

If we have a rough definition of ‘what’ self-direction means, we need to then think about ‘why’ this is so important to us. We expect, and value, being able to have control of what we want our lives to look like. We value having the authority to communicate ‘this is what I want and need’—in words and actions. We value being able to determine what is most important to and for us, and to be able to ‘just do it’. We value ‘competency’—if we are able to guide our own lives, we are seen as competent in the eyes of others. We are given opportunities to challenge ourselves and to learn in different ways, because people invest in us. We value sharing the joys and sorrows that our experiences bring, with people we are in some sort of relationship with.

So, if the ‘what’ around self-direction is clear, and the ‘why’ around self-direction is sound, why is the ‘who’ around self-direction so challenging? It is so simple, so right, and so ‘expected’ by us all that we ‘self-direct’ our lives, yet thinking about the ‘who’ self-direction is for can keep me awake at night.

I think about who I am, how I ‘self-direct’ my life, and the decisions I make (both good and not so good); I think about my friends, family and colleagues and how they are able to self-direct their lives and make decisions they want and need to make. Why, then, do we apply the lens of ‘except who’ to self-direction?

We (good people) can disregard what people are capable of, what people are telling us in their words and actions. We do not listen to people in a way that discovers what and how people want to live. We do not capture ways that people are making decisions and self-directing in their own way.  We default to ‘we know what is best’—an attitude that is sometimes hidden so well within us that we don’t even realise it’s raising its invisible head.

We (good people) limit people’s ability to self-direct. Our views and deeply held hidden beliefs limit people living good lives. We may not invest in discovering what is possible, because our lens is already tinted.  We fail to seek and understand more of the things that we are challenged by or don’t believe are possible. We, by default, decide what is good for people by not seeking and investing in these possibilities.

We (good people) end up controlling people and their lives, to the point that we convince ourselves it is what people need. We justify many reasons why self-direction is not possible for this ‘except who’ person. In our care and love for the person, we protect, and unknowingly impinge on their human rights.

The solution is to remember that self-direction is about us, as complex and beautiful human beings who get to be our own person, with our own authority and our own ways of being, loving, communicating, working, playing, and deciding what is right for us—free from external control and constraint.