One woman with spinal muscular atrophy uses the power of invisibility to her advantage
I was born with a superpower, only it took most of my life to realize that I had it. I had suspicions when I was younger, but never fully understood the breadth and depth of this superpower until recently.
I have the power to be invisible.
I can be in a restaurant and the wait staff doesn’t see me. I can be going down the street where people are aggressively distributing pamphlets, and I don’t have one thrust upon me. I can be at a workshop, and my supervisor will talk about my colleagues and not me.
The reason it took me such a long time to realize that I possessed this superpower is because I didn’t want to believe it was true. I didn’t want to accept this invisibility as another part of my disability. For years I tried to shift my perspective from “I was forgotten about” to “they saw beyond my disability.” I do think there is some value in this perspective, as it allowed me to cope with some of the more difficult times in my life, especially growing up.
I was diagnosed with type 2 spinal muscular atrophy, a form of neuromuscular disease, when I was 9 months old. I never walked except in swimming pools. I was in a stroller until I got my first push chair at age 4, and then I got my first power chair at age 7.
Even though I always lived my life in a wheelchair, I was blessed with a “prove-everyone-wrong” attitude. The first people I proved wrong were the doctors that gave me a prognosis of only surviving until I was 4 or 5 years old — proved them wrong (I am 39 years old).
People assumed because I was in a wheelchair I was also cognitively impaired — proved them wrong (I have a master’s degree in school psychology).
People assumed that I would never have a boyfriend or marry — proved them wrong (I’ve been happily married to my husband for 14 years and counting).
People assumed that I would never have a child — proved them wrong (my son is now 4 years old).
Part of the “prove-everyone-wrong” attitude came from the fierce desire to fit in. I thought that if I did everything that all my friends did then the wheelchair wouldn’t matter.
I grew up in a small town with a class of 35 students. Fourteen of us went from kindergarten all the way through senior year of high school. One might think that it would be impossible to be forgotten about in an environment this small. However that is just not the case. I recently asked one of the fourteen about social situations such as parties in high school or even parties today now that we’re adults. I asked if my name ever came up or if I was discussed in a negative way. I was told that I wasn’t talked about. I was forgotten. I was invisible.
I can’t say that I was surprised by this information. I have experienced it in one form or another over the years. From missing out on field trips because the teacher forgot to plan for my accommodations to teachers assuming I would be in less challenging classes at school simply because I was in a wheelchair. I was invisible.
These sorts of situations are extremely painful to face. The easiest way for me to cope was to tell myself that I wasn’t planned for or included because they saw beyond my disability and simply forgot to plan for my chair. It did take some of the sting away.
When I believed that they saw so far beyond my disability that they didn’t see the chair, it gave me an “ignorance is bliss” sort of feeling. However, I now realize that they didn’t see beyond the disability; my disability made me invisible.
There is a huge difference between seeing beyond my chair and seeing nothing because of my chair. Special people in my life like my husband and son have taught me the distinction. They would not treat me any differently if I were able-bodied. They wouldn’t love me any more if I could walk. I am still their wife and mother; I am still their family.
This is the question I am going to ask myself when these situations arise in the future: “Would I be treated differently by this individual if I were able-bodied?” If the answer is yes, then that individual is seeing past me. If the answer is no, then that individual is seeing past my disability to the real me.
I want to be heard and seen. I don’t want to disappear into the background. I want to be valued, and I want my contributions to this world to be recognized. I suspect that these are the same wants and needs as every other person on this planet; it is what makes us human.
Living my life in a wheelchair does not make me less human; it makes me more human. My superpower of becoming invisible may not be the most advantageous part of my disability, but I’m learning to embrace it. Recognizing when someone sees past me gives me significant insight into that person; it is a spotlight of insight and visibility into that person.
Sarah Manuel, who has type 2 spinal muscular atrophy (SMA), is a wife, mother and nationally certified school psychologist who lives life from a wheelchair but doesn’t take “no” for an answer. Follow along with her journey at sarahmanuel.com.