The former secretary general of the European Patients’ Forum, Nicola Bedlington, recently wrote of my new book that it “touches on the core themes that are at the heart of the MS community, and actually other communities of people living with chronic conditions too: solidarity, agency, knowledge and education, discrimination and stigma, the huge role of peers and family, among several others.”
You can only imagine how thrilled I was at such a glowing review of the collection of writings I’ve amassed here on Life With Multiple Sclerosis over the past 16 years. Thrilled and, frankly, quite humbled.
After reading the quote over (and over) again, the word “agency” stuck with me. It’s one I’ve been hearing and reading more often as it relates to people with disabilities over the past couple of years. It’s one I think deserves attention.
What Is 'Agency'?
The scientist Benjamin Libet first studied the concept of self-agency (sometimes called “the phenomenal will” or “neuroscience of free will” when studied as part of neurophilosophy) in the latter half of the last century. He is lauded for his pioneering achievements in the experimental investigation of consciousness, initiation of action, and freewill.
Libet’s work has to do with how the brain’s activity predicts our action before one even has conscious awareness of an intention to perform that action. Sort of heady stuff.
Agency, in the sense that I think it best serves us, is the sense of control — or at least of influence — that we have, while perhaps not on the world around us, but at least on our own thoughts and behavior.
I like to say that while I cannot control much, I can control my actions and my reactions to the world around me. That’s my “agency.”
What’s the Value of Agency?
Scientists say that agency keeps us psychologically stable yet flexible in the face of conflict or change. Heaven knows we need to be flexible to change with multiple sclerosis (MS)!
Some may see agency as a sense of power over things in our own lives. That’s not quite how I think of agency. Rather, I think of it as a handle for our lives.
Be it the handle of a door that leads me onto new adventures, the handle on a burden that helps me lift and carry it through my life, or even the handle on a service dog’s harness that helps guide and lead me through my days; I see self-agency as a firm place to grasp and hold my place in this world.
By taking hold of those handles, I have the ability and power to change the world around me and affect my future. We all have that ability, even if we feel that it is diminished from what it once may have been.
Even though MS changes much of my every day, I am still (in part, at least) a producer of my circumstances, not simply a product of them. Again, we all are.
How Social Support Helps to Create Agency
That someone who once led an international patient organization stated that this place we have created together addresses such important topics as agency (and the others she mentioned) brought to the fore of my mind that what we do here makes a difference.
We all make a difference. We make a difference in other’s lives. We make a difference in the world around us. Most importantly, we make a difference — we ARE the difference — in our own lives.
We make those differences by understanding that we are still capable of them, finding the handle, and holding on for dear life.
Wishing you and your family the best of health.