The Name in and of Itself

“Growing up, I knew the price of milk in dollar signs and stomachaches”.

“I live with a ringing in my ear like a doorbell going unanswered.”

Going back into my personal journal, I found these two quotes from an untitled and undated journal entry. When I’m journaling, I tend to let my stream of consciousness guide my pen, and I rarely take the time to look back on the things I wrote (I found some mediocre poems, but mostly college student angst).

Even so, I thought they spoke to my experience. From an early age, I struggled with hearing. My parents made their diagnosis of an annoying child who couldn’t care to listen. My ear doctor (also known as an otolaryngologist) walked my parents through multiple ear surgeries, leaving me in the dark and only knowing, “there is something that needs to be fixed”. Years later, with my eardrum collapsed and remnants of blood in my ear canal formed, I found myself with even more surgeries. Now, I have a titanium prosthesis acting as one of my middle ear bones. As I write this story, there are a lot of holes to fill for you as the reader (which I would like to do in later posts), and a great deal for me to learn for myself about my hearing.

Recently, I was diagnosed with Crohn’s Disease, a subtype of inflammatory bowel disease. I’ll readily admit that I’m unsure of the magnitude of such a diagnosis. (Again, another post on this soon.)

In either case, I never realized these identities classified me as “disabled”. Or, as I hope to describe, society labeled me as “disabled”. My parents never mentioned anything because I seemed to be doing pretty well. I was a talented bassoonist (still try to make some good music) and did great in school. I assimilated with “ableist” culture and denied myself the understanding of my disability. When I entered college as an ambitious dual degree student at the University of Michigan in bassoon performance and neuroscience, I knew I could not sweep by any longer without addressing how my hearing impairment might ‘stand in the way’ of my school work. I finally registered with the Student Services for Disabilities office, finding myself in a quasi-state of being labeled with a disability and having no clue what that meant.

I am still tackling the journey and experiences I have as a person living with disabilities. Hence, why not start a blog? Yet, Chimamanda Ngozi Adichie's TEDtalk “The Danger of Single Story” offers insight into only being fed a single narrative. I don’t want this blog to be a single story. I would like to change the monologue of misattribution of disabled identities from ableist culture into a dialogue of disability culture from all identities. Wow, I felt ambitious just typing that. This means I want to listen to others and learn from their stories. I am unsure what lies ahead as I open up a book of stories to a wider audience. The disclosure of my disability is my own choice, and I recognize there might be consequences of doing so; however, I could be just crazy enough to try it out.

The blog will capture my vulnerability in real-time. Brené Brown’s Daring Greatly describes “experiencing vulnerability [as not] a choice -- the only choice we have is how we’re going to respond when we are confronted with uncertainty, risk, and emotional exposure”. As you will discover, I am a huge Brené Brown fan and a true follower of her works. I think by drawing forth my experiences on living with a disability will spark conversations between my friends, family, and perhaps strangers. There is “uncertainty, risk, and emotional exposure” when opening up about identities. I often question if I have the gall to share my stories. Will people be shocked to hear that (blank) happened to me? Will people wonder why (blank) makes me who I am? People will question my story for its semantics and languages, its gravity to the moment, and perhaps to how it contributes to humanity.

One thing is certain: this blog will be a journey for me.

Disability culture fascinates me and being labeled with a disability was done through medical diagnosis for me. I was individualized to a set of conditions, including hearing tests, labs and procedures. My identity was and for the most part continues to be controlled by the medical authority that dictates if I meet the criteria of disability. Disability goes beyond this, allowing for the individual to identify with their own disability. There is self-value and meaning for people living with a disability.

Going forward, I believe this blog will help with disability culture. No culture will perfectly capture the moment, and my blog will not be a beholder of disability culture. It will, however, offer insight into the wholeness of people who live with a disability.

To touch on the two quotes at the beginning of the post, I’ll clarify my thoughts. Being allergic to milk growing up, I would get a gurgling feeling in my stomach that reminds me of the feelings I have living with Crohn’s disease. Whenever I sit in silence, there is a ringing in my ear that acts like a gentle hum, but sometimes it will take over my auditory system. This is when it sounds like a doorbell constantly ringing without an answer.

Here we go!