Agency: its nature and role in recovery from severe mental illness

Bellack and Drapalski offer a thoughtful overview of the concept of recovery as it has emerged from the consumer led movement. They note how, in parallel with empirical studies suggesting that recovery is more the rule than the exception for persons with schizophrenia, this movement emphasizes how wellness for persons with these conditions is often a deeply subjective, personal, and elusive matter. The authors argue that subjective accounts of wellness may not be sufficient objects for scientific study and call, therefore, for a sharpening of an operationalized definition of the more personal aspects of recovery. The review hones in on the issues of agency and self-efficacy as themes close to the heart of the consumer movement and ends with a description of efforts to develop a questionnaire which assesses these and related constructs.

For the purpose of this commentary we will focus on the issue of agency in schizophrenia, touching on its definition, role in recovery, and measurement. Agency seems an essential issue to carefully consider. It is both a theme which connects different subjective domains of wellness, and a construct that can be seen as one of the driving forces behind the consumer movement. The recovery movement is not only a reaction to paternalistic practices but also a response to certain scientific paradigms which emphasized outcome as the result of the interaction of larger social and biological forces, neglecting the role played by individual persons as they make their own sense of what is happening in their lives 1. At its heart, the recovery movement asserts that people are not passive sites where biological and social forces meet, but agents who interpret their experiences and whose meaning making plays an essential role in outcome 2.

To develop agency in the context of recovery from mental illness involves a range of discrete and more synthetic activities in which people are actively making meaning of their lives. To be an agent in a life with (or without) mental illness can mean deciding to do a particular thing (e.g., return to work) or to assert basic rights while facing injustice. To recapture agency can also, however, refer to regaining a larger experience of ownership and authorship of one’s thoughts, feelings and actions. Agency thus involves creating flexible and coherent accounts of the meaning of events which can be understood by others. The importance of agency and its independence from other aspects of illness and social injustice can be found in several compelling first person accounts 3,4. These reports demonstrate how recovery can involve becoming able to find a way to describe what is wrong and not wrong in one’s lives, what is mourned, hoped for and what is to be done about it, all in a manner that is accessible and understandable by others. The reader of these first person accounts finds a narrator who has become able to speak with a coherent authenticity that is not reducible to hope, symptom remission, or quality of life. The recovering person is not reading from a script or just endorsing a particular belief. The authors appear to be in recovery in a subjective sense in that in their writings they are making consensually valid meaning of the dilemmas they face in the world, no matter how difficult it is to be in that world.

If recovery involves recapturing a sense of agency, then it seems essential to understand the roots of this phenomenon. Bellack and Drapalski discuss the effects of stigma on agency and the related construct of self-efficacy. A wealth of evidence supports this, but a danger here is that lack of agency is understood as essentially a cognitive error or erroneous belief. Agency as discussed in the broader context of human experience is always reflective, embodied, and intersubjective 5; not merely a conclusion one has drawn about oneself. To be an agent is the result of the recognition and basic experience one has at an elemental bodily level which can be shared with and understood by other people. Indeed, empirical research has consistently found that many with schizophrenia struggle to perceive themselves as agents in experimental paradigms as well as to construct coherent accounts of themselves as agents across their lifetime 6,7,8,9.

This broader view of agency has important implications for the need of scientific study of recovery. For one, it affirms and clarifies some of the issues raised by Bellack and Drapalski. By understanding the intersubjective requirements of the experience of agency, we can see that legitimacy of subjective accounts of well-being rests on whether or not they can be understood and accepted by others. This is not to say that there are objectively right or wrong answers. For instance, meaningful accounts of threats to well-being can accept or reject the medical model and still be understood by others. It is just that not all accounts of life challenges make sense. We would suggest that this leaves the field in need of the measure Bellack and Draplalski are carefully developing but also procedures for quantitatively assessing the coherence and adaptiveness of the kinds of sense which persons make of mental illness as they recover. Examples of this needed alternative are recent work suggesting that the complexity and coherence of the personal narratives of persons with schizophrenia are a predictor of success in a work program and also may mediate the impact of impairment in neurocognition on social function 10.