My Invisible Disability

Graphic that says, "My Invisible Disability" with blue and yellow stripes

This guest blog post was written by Carys.

Throughout my former educational years, I was often identified by the hearing devices on my ears and the FM system that I walked around with. Following the same public school system from the fourth grade and until graduating high school, I was surrounded by many of my peers who knew of my deafness, who knew me as the girl who went to Speech Therapy on Tuesdays and Deaf Services on Wednesdays.

Back in elementary and middle school, my classmates would often speak into the microphone from across the room and excitedly watch my reaction from a distance. I remember my friends asking questions about my hearing loss out of curiosity and I would attempt to freak them out by talking about the magnets in my head. It was in school that I navigated an introduction to the hearing world. But I could do so with an identity that I resonated with. I learned how to wear my deafness like a heart on my sleeve and I remember how it felt to be perceived that way. Being disabled, it opened me up to the world of discrimination. My perspective differed from those around me and there were always people who were afraid of that difference. I got used to being different.

This lasted until I began to be perceived as non-disabled. As my words got crisper and my use of my microphone became less apparent, suddenly my difference was not something that people saw right away or associated with me. My young and curious classmates began to grow distant. My friends began to forget about the barrier. Strangers didn’t even look at me twice. I suddenly had no idea how to navigate a world that did not see me the way I saw myself. When someone is perceived as disabled, many people often try to make sense of it in their heads. They wonder how “disabled” one is, how they are “able” to function in their world, how hard or sad their lives must be because of it. And when members of the disability community are faced with those assumptions and questions, there can be a sense of inferiority or frustration of not being deemed as adequate in another’s eyes when they know they are. I have definitely experienced this.

But on the flip-side, there are members of the disability community that are faced with being treated as members of the abled community. I began to call this concept “invisible disability”. The layers and experiences of ours that are unseen, but still remain regardless. How does one get to be themselves when they are being seen or treated as something else? The answer to this question was one that I spent a long time trying to figure out and to this day, am still searching for. The ways in which this has affected me have impacted my sense of identity as a deaf person, my place in the hearing world, and my desire to speak up for myself. My external identity does not always align with my internal identity, and as a result, my experiences changed. A huge part of my journey was wondering if my identity was what others treated me or saw me as or if it was how I personally experienced the world and others. I wondered what the separation between me and my deafness meant for me.

“Invisible” discrimination came in many forms. Whether perceived as a compliment (i.e., “you speak so well for a deaf person”) or an assumption (i.e., “does she have a speech impediment?”), these actions still resulted in an ableist mindset. That the standard to reach is what the abled community can achieve. It didn’t matter that I was profoundly deaf, as long as I could carry a conversation with hearing people in a way that made them comfortable, that made them forget that I was different. I wasn’t “the right kind of deaf” anymore, I wasn’t disabled anymore. How could I be proud of my deaf identity when people saw success in me when I wasn’t associated with it? How could I explore this part of me when people accepted or judged a version of me that wasn’t the truth? How could I identify as deaf when people didn’t deem me as deaf enough? How could I speak up for myself when people didn’t believe I had anything to speak up for?

As I explored my relationship with my disability, I learned that I wasn’t alone in this journey. The concept of disability is so layered and complex and there were other people trying to understand it too. Already, the world is set up against those who are a part of the disability community. “Invisible” disability adds another layer. There is an expectation to interact with the world in a way that minimizes or hides one’s disability. There is a lack of empathy and support with those who are not perceived as needing it. There is a lack of identity building being allowed for those who are externally getting messages that they aren’t a part of that identity. There is a decision of disclosure that is hard to navigate when figuring out how one wants to be perceived in a given scenario, whether protected or harmed by being deemed “non-disabled” or “disabled”. And there can be a loss of the self, when one’s experiences are constantly in combat with what others believe, and as a result, treat them as, when it doesn’t align with the internal work and journey.

Everyone’s experiences are different and individual, and where these experiences intersect is where connection grows. When I found connection with others, I began to find a connection with myself. We are the sum of our experiences and we get to choose what we want that to say about ourselves.

I am just a person. But I am also a deaf person. The sum of the experiences that brought me here, those who told me “You can’t” and those who ignored real pieces of who I am, they all brought me here. I personally identify with my deafness because I see it as a central part of me, even when others don’t. But I know myself regardless of what other people think.