When Being in a Wheelchair Made Me Feel Invisible

Over the course of my 18-year journey with inflammatory arthritis and chronic pain, I have encountered many different situations and people along the way. Since it took me 16 years to receive a correct diagnosis, many treatments, therapies and even surgeries were tried.  Unfortunately, none of them were successful since I wasn’t being diagnosed correctly.  I struggled with debilitating pain, especially in my heels. My arthritis mainly attacked my feet and spine, but my feet were highly affected, causing me to not be able to stand or walk without severe pain. As a result, before being diagnosed, I would often use a wheelchair if I was going places that required a lot of walking such as a mall, a supermarket, etc. These
profound experiences while using a wheelchair are what inspired me to write this article today.

I was only in my 20’s, and struggled with having to accept that I needed a wheelchair to go to the same places as “normal people.” I would tell my mom that if we were going to go to a mall, we needed to go somewhere far, a place where I wouldn’t run into anyone I knew. I thought to myself, what would I say if I saw someone I went to high school or college with and they asked why I’m in a wheelchair? Would I say, “I have chronic pain and the doctors have no idea why?” Would I lie and say, “I temporarily hurt something and I’ll be healed soon?” All of these questions plagued my mind every time we went to the local mall or a place far away. I even thought strangers would ask me why I was in a wheelchair because I looked healthy and completely fine.

However, this did not occur.  In reality, not one single person asked me anything. Not one person even looked at me. I was completely invisible to the world.  It was an unfathomable feeling, one I had never experienced until being in a wheelchair. As my mom pushed me, I would look up at people and try to make eye contact, but no one would make eye contact with me. I was dressed nicely, my makeup and hair were done, yet none of that mattered. I wasn’t there to these people who passed me by; maybe I wasn’t even considered a person looking at them. At times people would smile and talk to my mom, but never to me. To think I had spent so much time worrying what I would say to someone if they spoke to me, when in actuality I felt completely invisible to the rest of the world.

Every single time I used a wheelchair, no matter where I was, this was my experience. Until one day, when something remarkable happened that I did not expect or foresee. As my mom pushed me in the mall, we passed a group of young adults with Down syndrome. The moment I came closer to them, several came up to me and started saying, “Hi… Hi…” in the sweetest and most genuine fashion. They were filled with smiles and kept waving. It was almost like they couldn’t wait to be my friend and talk to me.

Of course, I replied with “Hi everyone,” and smiled back at them. It was something I will never forget.  Their warmth was something I had never experienced before in interactions with strangers. It really touched my heart in a way I can’t fully describe. I was not invisible to them; instead I was completely visible and worthy of greeting.

This really got me thinking. Was I only visible to a group of individuals society often marginalizes and makes invisible as well? Why didn’t other people react in the kind manner they did? Was it the kind of empathy that could only be felt from one marginalized person to another? Why did people without a disability make me feel so different and invisible?

I felt the need to research this matter and see what has been written about this topic. I discovered an article entitled Evolved Disease-Avoidance Processes and Contemporary Anti-Social Behavior: Prejudicial Attitudes and Avoidance of People with Physical Disabilities. It discussed the theory of why people act in an avoidant manner toward people with disabilities. The article discussed how from a historical perspective, it would have been an adaptive survival skill to be able to identify diseased individuals and not interact with them, due to the high contagion factor. Psychological mechanisms have evolved from this adaptive skill, in which unconscious cues are activated when a person sees a disabled individual, i.e.: disgust, avoidance.  Moreover, it suggests that people tend to feel anxiety, tension and discomfort when interacting with disabled individuals. For example, a study revealed that people tend to smile less and gaze more at a disabled person versus a non-disabled person.

Clearly, the research had stated what I discovered from actually being disabled myself. But what are the social implications of these findings? I believe people are so afraid and fear their own mortality so much that they turn away. Some people don’t want to acknowledge sickness, disability, and difference. Maybe they don’t want to believe it exists or that it could happen to them. However, it can leave the disabled population feeling ostracized and unimportant. Moreover, it leads them to feel invisible. At least, that’s the way I felt.

The way people reacted to me was dehumanizing. It was without dignity and respect,
our most basic of human rights. We all want to feel acknowledged and not invisible, whether we have an invisible or visible disability, or use a wheelchair or not. It is time for more people to acknowledge that people with any kind of disability want to be treated in the same humane fashion as the “well” population.

This experience changed my life. Whenever I see someone who is different or in a wheelchair, I always go out of my way to try to make eye contact with them, smile and say hello.  Unfortunately, people are so trained from being invisible for such a long time that they often do not make eye contact back. But when it does happen, something special often occurs. Their smile is so genuine and appreciative that it is hard to think why someone would ever not acknowledge them in the first place.

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