Agency, Autonomy, and Mental Illness

I once suggested to a writer that he should include chemist Clara Immerwahr in his book on notable women. After her education, she had no opportunities to do her own research, as it was the early 1900s. Instead, she helped her husband in his. In 1915, she killed herself because she couldn’t accept the weapons-related research on poison gases her husband was doing. My friend replied that he wanted the women in his book to demonstrate agency.

At the time, I didn’t know what “agency” meant in any context than as an organization or business. Gradually, I learned what else it meant. And I looked it up for an official definition. After giving the definition I expected, I learned that “sense of agency refers to the feeling of control over actions and their consequences.” Clara Immerwahr did not have agency, and she was not included in the book, even though her story was both poignant and important.

While I was at it, I looked up the definition of autonomy. The definition included this: “Autonomy is all about having a choice and a voice. It fulfills an innate need to feel that we are acting of our own volition, allowing us to fully accept the consequences of our actions. It means feeling psychologically free and having the ability to control your life.”

It occurred to me that people with mental illnesses often either lose their agency and autonomy or never have them in the first place. Of course, many (I hesitate to say most) people these days lack agency or autonomy. They feel trapped, unable to control their own lives. How many people are ultimately psychologically free? How many control their own lives? Limited agency and autonomy are all that we seem to get, and limited autonomy strikes me as being like those ads that say a dental treatment is “virtually painless.” When it comes right down to it, that means “not painless.”

But with a brain illness, it becomes much more difficult to achieve agency or autonomy. The illness takes them away. A feeling of control over actions and their consequences? Tell that to someone who has just maxed their credit card on a manic jag. Minimal control of actions and no control of the consequences. Psychologically free and having the ability to control your life? Tell that to the homeless person with schizophrenia.

IMHO, one of the purposes for the mental health “system” ought to be restoring agency and autonomy to the people they serve and then helping them keep it, whenever possible. But that’s too much to expect, I guess. With the little funding for services and the lack of availability of proper care, there’s not much help for the person with SMI who wants to achieve agency or autonomy. In terms of mental health, just as in senior care, agency and autonomy are difficult to attain and maintain. We don’t have the kind of institutionalized care that would take away agency and autonomy completely, but neither do we have the systems in place for supporting those who have a chance at reaching it. It’s one of those Catch-22 situations.

You can’t give someone autonomy. You can only facilitate it. But we’re not even doing that.