Some time in my senior year of high school, I remember a checkup appointment with my neurologist. At the time, I was orienting myself towards different undergraduate programs and also thinking about the practical parts of being sent off to college.
The only thing I remember form that appointment years later is that the neurologist suggested I considered to apply for accessible student housing. I remember being surprised by the suggestion, because I had never thought about it before. Neither did I feel like I needed it, or identified as a person with a disability.
I was born with a form of myotonia which is a neuromuscular disorder that causes muscle stiffness and weakness. In daily life this translates to discomfort when walking, running or climbing stairs, among other things. It's mostly invisible, though if you look closely you may notice that I have a specific gait, and that I sometimes have trouble with fine motor skills.
It was obvious to me that this condition was a part of me, but to think that it could warrant some form of accommodation was a new thought. Am I disabled enough? Most of the time, a staircase is a small inconvenience, and I can usually manage to walk up and down them without too much trouble. It just depends on the day and how much I have been using my muscles, as well as other factors intangible to me.
So I dismissed the neurologist's counsel, only to be confronted with a difficult time in my time at college. I would feel exhausted after a long day of classes, and I would often have to skip social events because I was too tired to go out.
It is only later that I learned about invisible disabilities, and started to understand and identify with the concept.
I'm clearly not alone in having this experience either.
There is this social pressure to be able to show that you are disabled, and to be able to prove that you need to have needs met such as accommodations. Additionally, disability is often understood as something that you can see (immediately obvious to others), and that it is a binary state (you are either disabled or not).
Another aspect of this is that disability is not a static state. It can change over time, and it can be different for different people.
The one moment you may be lip-reading in a hectic conversation, and the next moment it is draining.
The one moment you may be able to walk up a flight of stairs, and the next moment you are out of breath to do anything else.
Sometimes you may strategically plan your day around your disability. Think about that one lactose-intolerant friend who is the biggest cheese fan you know. They may be able to eat cheese on a day when they are not going out, but they may not be able to do so on a day when they have to go to work or meet friends. It's a cost-benefit analysis.
This static, binary understanding of disability -- that you're either clearly disabled or not—can be both limiting and harmful. It leaves little room for the nuanced, day-to-day realities many disabled people live with.
Take, for example, what happens when someone applies for disability accommodations or benefits. If their needs aren’t immediately visible, or if their condition varies, they may be seen as not “disabled enough.” That question "am I disabled enough?" can create a sense of doubt or even guilt, pushing people to underplay their needs rather than advocate for themselves, as I have done.
This view also reduces the experience of disability to whether or not someone uses accommodations, rather than recognizing it as a dynamic, lived experience shaped by context, energy levels, and countless other factors. It ignores the complexity of navigating a world that isn't designed with your body or needs in mind.