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Group of people one greyed out/invisible woman being bumped into by another woman looking at her phone.

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • tckrd
    2 weeks ago

    Yesterday while standing at an elevator I noticed or felt someone staring at me. Finally they asked why are you wearing those braces. I was shocked. I called down and used it as a way of educating.

  • andic
    2 weeks ago

    I’ve noticed that “invisibility” since being in a wheelchair. One loses at least 2′ in height when sitting down instead of standing up. I have had Uber drivers pass me bevause they couldn’t see me standing to wave at them!
    Another time, I was to appear as a guest on a local morning chat show about body image & disability. The other guest was a woman w/Post-Polio syndrome who was using a wheelchair. I was pushing the chair; when we appeared at the reception desk at the TV studio, the receptionist assumed that I (standing) was “Dr. So-and-So” . I corrected her saying, “no, I’m Andi. This lady is zDr. So-and-So”. I ended up recounting this experience on the program. So yes, adaptive equipment, such as canes, walkers and wheelchairs does make a person using these things appear invisible..

  • chicagovegas
    2 weeks ago

    I use a rollator as a seat in restaurants and I cannot count the number of times people bump into me even though I am careful to make sure I am not in anyone’s way. No one EVER apologizes or acknowledges my presence. It is so frustrating! I often get a dirty look like it is my fault I was in their way. Makes me so angry!

  • andic
    2 weeks ago

    So true! I have had to leave my rollator in a check room area when going to the theater or in the coat room at other meetings and be escorted to my seat due to fire codes.

  • Lawrence 'rick' Phillips moderator
    3 weeks ago

    For most of my life I was almost completely invisible. Hence once I started not being invisible I just wanted more and more.

    Now of course my wife reminds me that I need to be more invisible. Yeah I refuse to listen. I am way over being invisible. 🙂

  • Mary Sophia Hawks moderator
    3 weeks ago

    Oh Kelly, thank you for bringing this to our attention. For an extended time before I had my knee replacements, I had to use the motorized cart in the grocery store. I was amazed at the people who would walk into me or rush around me to get ahead of me in line. Having always been tall and noticeable, this was eye-opening to me.
    People seem to be so focused on their mission, that they don’t truly see.

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