I’ve been working on the following essay for weeks, attempting to precisely articulate the complex thoughts and feelings I have as a person who neither identifies as “abled” nor “disabled”. This is a huge departure from my previous posts, but this topic is very important to me. If you enjoy it, let me know and share it with friends!
Over the past five years, dialogue about gender and sexuality in America has radically shifted. The idea of gender as a simple binary of “male or female” has shifted to perception of gender as a spectrum, with male and female being at each end. I bring this up to pose a question: if we as a society can make strides toward dismantling the gender binary, can we do the same for perceptions of “disability?” Can American society question what we consider “disabled” and how we treat people upon whom we bestow this label? Can we stop assuming that physical differences are directly tied to inteligence or capability? You know what they say about assuming things. 🙂
I was born on April 7, 1999 a few minutes after midnight. Three hours later I suffered a cardio-respiratory arrest but I was eventually resuscitated. However, the prolonged lack of oxygen and the brain stem injury resulted in nerve damage and muscle paralysis. I have muscle and nerve injury in my face, but no cognitive or developmental delays. In fact I was able to skip senior year of high school and do PSEO at Bethel University.
I do not identify as “disabled.” On one hand this is a legal matter-the state of Minnesota does not recognize me as a disabled individual under their regulations. But on the other hand it’s a very personal question that speaks to how others perceive me and how I interact with the world around me. There’s a perception in American society that limited physical ability directly leads to less autonomy or opportunity in life. This is a common reality for many people, but not for everyone. The label can become limiting when what is true of the few is applied to the many. Even if those around us believe that we have no limits, the misperception can fester in our own minds. Even beyond the philosophy, there’s a simpler reason I don’t label myself as disabled. If human functionality can be analogized to a battery, I run at about 95% compared to a “typical human.” There’s just a few muscles and nerves that don’t fire, but they are a fraction of an otherwise optimally functioning body.
With that said though, I recognize that I don’t fit the mold of a typical able-bodied individual, and I do face some very real physical challenges that others do not. Because of jaw and mouth paralysis, I often get misunderstood when I speak. I physically cannot close my eyes. I sometimes have trouble swallowing foods that are tough in texture. These and other issues can be inconvenient, but they don’t prevent me from living a rich and fulfilling life. Still, the reality of my physical challenges stings sometimes. I was raised with a ‘defy the odds’ mentality. This has propelled me forward in physical healing, but has also given me a sort of arrogance, a belief that I am entitled to unbiased interactions, to live without bearing prejudices. Unfortunately we don’t live in a utopia yet, so I am occasionally the target of misperception and condescension. It gets irritating when I am told I look tired, or asked if I am in a special ed program, once a month or more.
I currently have two wonderful jobs, but it’s been a journey to get these jobs. Two of the places I’ve applied to have rejected me multiple times. One might simply be an error of oversight or lack of availability. The other establishment is almost certainly discriminating against me on grounds of disability.
Here’s a recent article on a similar case. Logan has been able to secure a job by going public with his story, and I applaud him.
But even aside from my distinguishing physical characteristics, there is so much more to who I am. Being “disabled” doesn’t constitute a human’s entire identity. Someone can be an artist, a sports fan or a a dedicated athlete. More importantly, everyone is a child or spouse or sibling to someone. Our relationships, talents, passions-these should be written across our bodies so they are the first things people notice about us, rather than our physical appearances or capabilities.
Furthermore, everyone has something they are not able to do, or that they struggle with. Some people are taller or shorter than they’d prefer, some don’t like their gender or the color of their skin. Some people have a harder time socializing, or can’t make a jump shot. Often these are characteristics that we cannot control or change. This isn’t to condone victim mentality, simply to acknowledge that we don’t always have full control over basic fundamentals like race, gender, or ability. Everyone is both abled and disabled on different levels. As Jon Kabat-Zinn says “there is more right with you than wrong with you at any time.” If we focus on positive aspects and commonalities, we can infinitely expand our connections.
Throughout my life, I’ve rarely seen others who share my unique outlook on life of being written off based on physical challenges but highly capable and intelligent. However, I have been very encouraged in recent months by contemporary social media influencers, such as James Sutliff.
James Sutliff is a body builder and training coach based in the UK. He also has Dystonia, a neurological disorder that causes muscle issues. Unlike me, his condition set on much later in life, but like me he retains full cognitive faculties, although his speech and mannerisms may give a different impression. He does identify as “disabled,” but does not allow that to impact how he uses his platform.
James Sutliff is a wonderful example of someone who defies typical perceptions of ability and disability.. Another example is Nyle DiMarco, the season 22 winner of America’s Next Top Model, who happens to be deaf. He uses his platform to raise awareness about being deaf and achieve more deaf representation in media. Both of these guys are wonderful examples, and I would love to see other individuals being represented in media as they defy ability perceptions.
Whether or not you see someone as abled or disabled, you can treat them with dignity, as if they are simply another precious human, because they are. People tend to make snap judgments based on appearance, and then exclude or discriminate people based on these unproven characteristics. How about we treat every human we meet as an intellectual and social equal until it becomes necessary to do otherwise? There is no reason to talk down or condescend to someone unnecessarily, or to avoid directly addressing and interacting with them. So many people are afraid to interact with those who are different out of fear of misspeaking, so they simply avoid “the other” which just perpetuates the misperceptions and divides. Let’s stop assigning dignity and capability to people based on a quick judgment, and instead let’s allow them to tell us who they are.