Growth is not always linear. My onset of unilateral idiopathic sensorineural hearing loss (also known as sudden, one-sided inner-ear hearing loss) has reminded me constantly about this. At times, this condition has forced me to pause and take a break. I have gained a disability, but I have also acquired a new identity – one which has changed my perceptions about myself and society. This new identity has become a reminder that to truly grow, we all need community and help from one another. This is the story of my journey towards accepting my disability.
On December 5, 2019, after a busy day at my 9–5 government job, followed by a college seminar class, I was in my school’s library working on an essay that was due by midnight. At 10:00 p.m., I noticed that the music on my right ear sounded odd. At first, I thought my inexpensive earbud had gone bust. When I got home at 12:30 a.m., the sound in my right ear continued to sound abnormal, and I sensed an unfamiliar ringing. Coincidentally that semester, I was taking an audiology class as part of my speech-language pathology major, so I feared that this could be hearing loss I had learned of in my textbook.
When I realized what was going on, my blood rushed to my face. I tried popping my ears in an effort to regain my full range of hearing. I even switched to new earbuds – hoping that it was a malfunction of the wire and not my ear. These attempts fixed nothing.
The next day I went to my primary care doctor, who quickly referred me to an otolaryngologist (also known as an ENT). In my audiology class, I had learned that hearing loss can be transient, such as when there is an ear infection like otitis media, which hinders the ear’s ability to detect sound properly. Transient conditions can be remediated with medical interventions but when detected, need to be treated quickly to avoid permanent damage.
With my appointment booked, I headed to the ENT. It was a race against time. After several tests, including pure-tone testing, speech testing, tympanometry, otoacoustic emissions (OAE), and an examination of my ear canal and nasal cavity, I was diagnosed with significant hearing loss on my right side. Everything I heard on my right side sounded like it was under water because I couldn’t properly hear sounds greater than 8,000 Hz on a pure-tone test. Typical human hearing ranges from 20 Hz to 20,000 Hz – meaning my right ear had a reduction of 60% hearing ability compared to my left ear. At the time, it was still too early to confirm permanence. There was hope that long-term effects could be mitigated through steroid injections into my middle ear. This treatment was no promise, but I clung to the hope of full-range hearing. Upon signing several liability papers, I began three-weeks of painful injections that had no guarantee.
Once the steroid regimen was over, my ENT re-diagnosed me with sudden, permanent sensorineural hearing loss. In other words, there was no treatment that could restore my hearing given that the issue was deep inside my inner ear. The ear is divided into three parts: the outer ear or ear canal, which funnels soundwaves into our skulls; the middle ear consists of tiny bones that convert soundwaves into mechanical energy; and the inner ear houses small organs like the cochlea, which convert that incoming energy into electrical impulses that are picked up by cranial nerves. Damage to any of these organs and/or nerves is irreversible. Thus, there was little to no solution that could solve this onset.
This diagnosis stripped me of something valuable. Growing up, my hearing provided me with a sense of pride when at school. I would score higher on the annual audiology screenings than most of my monolingual classmates who made fun of me for not speaking English properly. My hearing allowed me to distinguish the French /y/ from the Spanish /u/ and the English /ʊ/ when I moved to the United States at age three. To the untrained ear, those phonemes might sound similar, but my ears, even without training, picked up these acoustic differences. Without this sense, I wondered what would become of me, and how would I cope with another social barrier – the barrier of disability.
As a Brown Latinx immigrant who was raised poor in the Bronx and who didn’t quite fit into heteronormative gender roles, my hearing was my unique advantage – or so I thought. In those early days of disability, I saw my hearing loss only as a deficit rather than as an opportunity to grow. This changed as my audiology professor and others in my SLP department helped me to understand this condition. They reminded me of the reasons why I wanted to pursue a major in SLP: to help others understand and overcome communication barriers. In that, I gained the perspective of what it was like to be a patient seeking support and services to meet their communication needs.
An immediate remedy was getting a hearing aid. I knew that hearing aids came in modern tiny earpiece models like the ones spies wear in movies. Initially, I was down to try out this new aesthetic. What I didn’t realize was that the physical disability of hearing loss was compounded by social barriers and bureaucratic challenges in trying to get a reasonably-priced device.
Hearing aids have made hearing better for people like me since 1902. Modern technologies have made it possible to create hearing aids that sync up with smartphones and use rechargeable batteries. Gone are the days of bulky hearing aids and battery purchases. But despite the advances in biomedical technology, accessing such devices has become more difficult. When my audiologist and I had “the talk,” she gingerly disclosed that the hearing aid suited for me would cost around $1300. This was more than my biweekly salary, so I panicked. It would have to be either rent or buy a hearing aid; thirteen weeks of groceries or a tiny device half the size of my pinky. My ear was suddenly pinned against a financial wall, a situation that too many often face. My insurance did not cover this assistive technology because according to the American Speech-Language-Hearing Association (ASHA), New York State does not require insurance companies to cover this cost. For most insurance companies, hearing aids are not covered because hearing loss is viewed as a statistically unlikely condition that doesn’t fully impair life for most people.
But this goes against the data that highlights the need for these assistive technologies. The NIH reports that two to three out of every 1,000 children born in the US have some hearing loss. Hearing is a crucial component of speech, language, and subsequently reading and writing. Without access to a hearing aid, children with hearing loss run the risk of not developing language and speech. This may ultimately become a barrier to their participation in a society that makes few accommodations for Deaf or hard-of-hearing people and may cause deficits in learning or acquiring written language.
Furthermore, as many as 48 million Americans have some form of hearing loss, and the chances of hearing loss increase with age – with about 2 out of every 3 adults over the age of 75 having some hearing loss. With these figures, insurance companies should provide more affordable access to hearing aids; in the UK, for example, the National Health Service offers reliable devices for free to anyone who needs it.
I could have given up when I found out the price, but I didn’t. I was lucky to secure funding for a hearing aid through my union. Many appointments, tests, and phone calls later, I am now expecting my hearing aid soon – more than a year after my diagnosis. I realize that not everyone who needs a hearing aid is part of a union or has a job that allows them to unionize. As a multilingual immigrant, I also wonder about the added challenges for people who are at the crossroads of disability and historical disenfranchisement. Such intersections disproportionately hinder disabled Black, Indigenous, or immigrant people from accessing support and services on top of the marginalization that comes with their disability.
My disability has come with challenges, but I have fused my new identity with my pre-existing ones to envision a better world not just for me, but for many people with disabilities. I acknowledge that my particular acquired disability cannot compare to some congenital or more profound impairments, but it has reinforced my decision to continue pursuing a career in Communication Sciences and Disorders. I don’t know where this path will take me or what exactly I will do, but what I do know is that I want to be part of a growing body of researchers, clinicians, and policymakers who will advocate for easier access to the support and services pivotal for living fulfilled lives in a society truly rooted in equity and belonging.