Several weeks ago, I underwent ulnar nerve transposition surgery after the ulnar nerve in my left arm was compressed at my elbow. To relieve the pressure and prevent further damage, the surgeon moved the nerve from behind my elbow to a new position in front of it.
For several weeks, nothing involving my left arm happened without a conscious decision. Simple movements stopped being automatic. Opening a door meant deciding how to pull it. Lifting a pan from the stove meant thinking about where to place my hand.
Carrying laundry meant deciding whether it could wait or whether there was another way to do it. Ordinary tasks became a series of deliberate decisions rather than the automatic routines I had taken for granted.
As recovery progressed, those choices gradually faded into routine again. Once they no longer required conscious effort, a deeper question emerged: if so many decisions become routine, what does it really mean to be independent?
Conversations about disability often center on independence, yet the word itself is rarely defined. Understanding the concept requires distinguishing independence from self-sufficiency. Although the terms are often used interchangeably, they are not the same.
Self-sufficiency focuses on meeting one’s own needs with minimal assistance from others. Independence focuses on making decisions about one’s own life. The emphasis is not on performing every task without assistance but on retaining the ability to make those decisions for oneself.
Although the distinction may seem subtle, it changes the way disability is often discussed. Independence is often measured by the amount of assistance a person receives. As supports decrease, the assumption is that independence has increased. Sometimes that is true. Sometimes what has increased is self-sufficiency.
Recovery reminded me that living with a disability often begins with decisions most people never have to think about. For many people with disabilities, the first decision is what can realistically be taken on. What has to be done? What can wait? Accepting an invitation may mean postponing something else. Saying yes to one commitment may mean declining another. Plans often have to be adjusted as circumstances change.
Not every decision is about time. Some involve disclosure. Is this the right moment to mention a disability, or is the conversation unlikely to change anything? Others involve deciding whether to request an accommodation or find another way to accomplish the same goal. Sometimes the wisest decision is not to push through at all. Made day after day, these choices gradually become routine.
Maintaining independence requires work that is largely invisible to everyone else. What others notice is someone arriving at work, giving a presentation, volunteering, or enjoying a family gathering. What remains unseen is the ongoing planning, decisions, adjustments, and tradeoffs that make those moments possible. As a result, independence is often judged by what people accomplish rather than by the effort required to participate in the first place.
Participation is often built on dozens of decisions made long before anyone else notices the outcome. The better those decisions work, the less likely anyone is to notice they were ever made.
Perhaps independence is not defined solely by what a person accomplishes without assistance. Rather, it is measured by the freedom to make one’s own choices and direct one’s own life, even when those choices remain invisible to others.
Several weeks after surgery, opening a door no longer requires a conscious decision. It has become routine again. That may be the paradox of independence: the more successfully it is exercised, the less anyone notices it.
Its clearest evidence is often its invisibility.
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