The (In)Visibility Dilemma

Depending on the situation, I struggle with either being too visible or being seemingly invisible. It often feels like there is no middle ground! Either people are staring at me pointedly because I stand out with my joint deformities and motorized wheelchair. Or, they walk right into me like I don’t exist. It’s very confusing.

I struggle to find a rhyme and a reason to my (in)visibility. Why do I seem to be visible in some places and non-corporeal in other places? For example, my husband has seen people walk into me on the sidewalk like I don’t exist. Or step around me when I’m waiting in line like I am an obstruction instead of a person. “Hey!” I’ll exclaim: “I’m a person! I am here!” Sometimes the individual will half-turn in surprise with a startled look on their face that says: “Oh my gosh! They do exist!” It makes me feel either like Santa, an M&M, or the creature from the black lagoon.

The invisible illness struggle

On the other hand, I had to learn from a young age to ignore the stares. I don’t know when exactly it started, but I remember since a young age being stared at by people on the street, at the mall, in restaurants and so forth. People seemed to be amazed that a girl with a limp (or later, a wheelchair) would dare to venture forth from the cave she dwelled in with the other forbidden creatures. OK, I’m exaggerating but only by a little! There did seem to be a lot of shock about my going out and about regularly.

Has society actually gotten better about this?

I like to think that people have gotten more accustomed to seeing people with disabilities, visible illnesses, and other differences of humanity. I like to think that the world has become more accessible and that people have become more accepting of natural human differences. And I like to think that more people with illnesses and disabilities can be out and participating in the world than when I was a child. Generally, I do think these things are true.

How I deal with too much visibility

Maybe that’s why when I am stared at, or people make inappropriate comments or they grab onto my wheelchair like I’m a piece of furniture — it feels more alarming and enraging. It’s like because I think things are better, I get more upset when I find myself in a situation where they are not. It’s like a bucket of ice poured over my head. First, I am cold. Then I am very, very mad.

So, I cultivated a practice of ignoring strangers who stare, not hearing the rude comments, and trying to not observe behaviors that I don’t care for. A wise person said once that a little blindness and deafness helps in a relationship. I think this also goes for my relationship with humanity. I don’t need to observe all the assaults humanity throws at me, so I try just to concentrate on the big ones.

The "too much invisibility" conundrum

For the invisibility problem, I don’t often know what to do, so my behavior will resort to shouting. Sometimes, it’s just a simple: "Hey! I’m here!" But, I am trying to get better at letting this go too. If I am unseen, then maybe I can use this as a superpower? If only it were that easy.

Most of the time I just shake my head in wonder that a person could walk into me, that they could budge ahead of me, that I am so easily unseeable from their world view. It’s happened so often that I have turned to my husband and asked: “Am I here? Am I corporeal?”

Perhaps someday I will find just the right amount of visibility. I imagine on that day all the people I encounter will view me as a whole person—not a sick person, or someone riding around in metal furniture, or someone of such little consequence that I go unseen.