The american philosopher Martha Nussbaum wrote a wonderful book of great relevance in psychiatry, care and education. It´s called Frontiers of Justice. In it she claims that all care concerning people with disabilities is centered around the limitation of people´s autonomy. We limit people´s autonomy when we decide they should brush their teeth, get up in the morning, stop shouting and all other demand situations. There´s a paradox though. The goal of the care concerning people with disabilities is to enhance their autonomy. Nussbaum thinks that this is an ethical problem but that it can be solved by keeping an ethical code of conduct penetrating every aspect of the care. She thinks that it can be ok to limit somebody´s autonomy if we have a good argument every time we do it.
There can be many arguments. Those I find relevant in my work are:
- Avoiding danger. We limit people´s autonomy around playing on the motorway. And we even sometimes grab somebody when they are stepping out into the traffic to prevent him or her from getting hurt.
- Care. We decide that people with disabilities (and our children) should brush their teeth and shower. When we are using the care argument we do not have the right to use force, though. We need to consider our procedures and methods in order to get the person to say yes if we are to stay within the ethical limits of using the care argument.
- Increasing actual autonomy. People with developmental disabilities or psychiatric problems are rarely good at deciding what´s best for them in the long run. They often act impulsively or stereotypical (repeating behaviour) without thinking through how to act. That can be seen as actions without autonomy. By limiting the range of possible acts we can increase the actual autonomy. Another example is when we limit the autonomy of a fifteen year old regarding school assignments in order to widen the possible future occupations.
The last argument is central in this text. We can increase actual autonomy by limiting the autonomy.
We can use a traffic metafor as an illustration:
The government have limited my autonomy by law. I am only allowed to drive on one side of the road. In Sweden where I live it is the right side of the road. I am not allowed to drive on the left side of the road. I consider that an enormous limitation of my autonomy. But it increases my actual autonomy.
I drive many miles every week. I drive between cities all over Scandinavia. I do it in order to consult and lecture concerning challenging behaviour. I´m writing this text on a wednesday evening after this week alone having driven 1500 miles. The only way to make that work is to do as I´m being told: Stay on the right side of the road. If everybody was allowed to decide if they wanted to drive on the right or the left side of the road it would be extremely dangerous to drive faster than 10 miles an hour. That would limit my possibilities concerning where to go and where to work. By limiting my autonomy concerning which side of the road to drive on the government increased my autonomy concerning where to drive to. The actual autonomy have increased because where to drive is more important than on what side of the road I drive on.
When we make a schedule or visual structure for a person with autism we limit the person´s autonomy in order to increase the actual autonomy. We do it because people who benefit from visual structures often have great difficulties choosing what to do. If they can do anything they want to there is a risk that they that they always choose the same behaviour or task, or that they choose impulsively and without thinking. But supplying them with a visual structure is an ethical challenge. We need to have a good argument for limiting their autonomy. we need to make sure that their actual autonomy increases. We can do that by letting the person choose activities by using choice pictures. If the structure is good enough the person will make flexible choices, not always choosing the same activity. If the structure is too loose the person is likely to make stereotypical choices, for example by always choosing the same activity or always choosing the first alternative.
Because of that the choice pictures must picture activities that are equally attractive. Even I choose stereotypically if I´m presented with the choice of jogging or drinking coffee. If the activities are equally attractive the person will make flexible choices if he or she is not stressed. This all means that we increase the structure (thereby limiting the person´s autonomy) if the person is unable to choose, and loosen the structure (increasing autonomy even in the short perspective) or stay where we are if the person do make flexible choices.
Another aspect is the ethics of how we choose our methods and procedures. If a person in our care don´t want to do what we think they should we have to first consider whether we have a good argument. A young woman with autism that I worked with always took her ”go for a walk”-picture of the schedule and flushed it down the toilet. We then had to consider the argument for limiting her autonomy concerning walks. We realised that her self injury (she sometimes bit her hand) disappeared if we went for walks in the afternoon. That means that the argument is there, and that it is a care argument (biting of one´s hand isn´t dangerous). Because it is a care argument we should not force her to walk. We need to make her want to go for walks. What we did was to change her ”go for a walk”-picture from a shoe to a duck. We do not go for walks anymore, we go feed the ducks. That is a meaningful activity to her and she never refuses to go anymore. Her quality of life has increased, she engages in meaningful activities and we have not limited her autonomy more than needed.