That’s the number of people with disabilities working in the US, compared to 68.2 percent without disabilities, according to United States Department of Labor’s September 2015 Disability Employment Statistics.
The Americans with Disabilities Act (ADA) has laws that make discrimination on the basis of disability illegal, but my high school experience showed me the slippery ways people in power can bypass these laws.
In my first post-graduate job, a makeup salesperson at a major US department store, I received diversity training, which included many topics: language inclusivity; recognizing racial bias; respect of different religions. But what struck me was the topic of disability.
When I first entered the workforce, my parents encouraged me to hide my disability because I passed for able-bodied better than most people in my position. Any discrimination, they believed, would be brought by my openness, and they suspected it would be better for me to be quiet. Typically, I would have rejected this advice, telling my parents I would not be shackled by chains of ableism created by ignorant people, however, I was nervous about my post-collegiate future and felt adrift in the “real world” after almost 20 years of academia. I hated living at home and I wanted to earn money, but I was not sure if moving out and making a living would be possible if I was open about my hearing loss. Wanting to err on the side of caution, I nervously chose to go into hiding on my first day of work.
For the first 12 years of my life, I slept peacefully through the majority of thunderstorms. If I ever awoke, it was during a strike so violent everybody in the house was awake, and huddled in my mother’s bed.
With half an eardrum in one ear and no eardrum in the other, the idea of a thunderstorm being frightening seemed silly. Why would pretty flashing lights with next to no sound be scary? As long as there was no thunder, storms seemed like a ridiculous thing to fear.
Summer 2005, however, would change this idea for the rest of my life.
Almost one year after my left eardrum was repaired and half my hearing was restored, the horror of strange sounds hit me.
One of the most common accidents with hearing aids is a pet thinking it’s lunch.*
If you Google the phrase “pets eating hearing aids,” you will find endless articles and pet shaming photographs detailing this horror. No matter how often I read these stories however, I never believed it would happen to me. Throughout my life as a hearing aid user, I never had problems with my dog, Daisy, or my cat, Greta, going near my hearing aids. I could leave them on my bureau every night and know they will be in the same place the next morning. Although Greta and Daisy were senior animals when I received my Audèo V, both of them were in the prime of their youth at ages eight and three, respectively, when I received my first hearing aids at age 12. I was lucky that even then, they never once mistook my hearing aid for a meal.
My views on pet behavior around hearing aids, however, changed when I started taking live-in pet sitting jobs at age twenty-two when I met a cat named Neeley.
I always get upset when I am told that “it’s not that important” because, to me, hearing every single thing people have to say is a gift. After fighting for my hearing through ten surgeries, I have learned to never take the spoken word for granted. Whether it’s listening to what other people have to say, or hearing enough to form your own opinions, spoken words have always been a treasure to me. Being told “never mind, it’s not that important” takes away my joy in hearing other people and my chance to stand up and form an opinion. This small phrase cuts me deeply, and makes me feel isolated.
I remember telling my mother this when she said that phrase to me. After hearing it from her constantly, I finally lost my temper and said, “It’s important to me! I want to hear your words and decide for myself how I feel about them!”
From my perspective, it felt like another instance of bigotry against hard of hearing individuals. In response to that view, Mom mentioned that most people are often self-conscious about their speech and sometimes embarrassed to share ideas. If they are asked to repeat themselves, they shut down and say “never mind” because they feel their words and ideas are stupid and hate to hear more than once. It was a problem that especially hurt my mother because, like me, she spent her whole life being called stupid. Continue reading “When “Never Mind” Goes Both Ways”
There are very few places in life where I actively feel my disability. With an Audeo V riding in my right ear, amplifying the world’s sounds, I can almost feel “normal” when I am around other people. Conversation has its difficulties, but usually most people are accommodating in a large crowd. Often, the participants will even say “Oh, no one can hear in a crowd like this anyway.” We all laugh and enjoy the evening, mostly filled with jokes, and the occasional drink.
One place where I consistently feel my hearing loss, however, is when my dad asks if I want to take a ride on the boat. Any time I go near water, I have to leave my hearing aid at home. Most hearing aids are not water proof, and my model is incredibly sensitive to even the slightest drop of moisture. At the beach, I can still pose as “normal” because I spend so much time body surfing over the waves until I am carried back to shore.
In the hull of a Sunfish, however, I cannot pretend my loss does not exist because I have no hearing aid to help me sail across the sea. As I put on my life vest and help my dad take the boat into the water, however, the dizziness accompanying my loss is accompanied by embarrassment. The only other children who sail with their parents are ones who do not yet know how to sail themselves. By the time they are twelve, they can man Optis and Sunfish by themselves.
Everyone else my age has been sailing on their own for years. Seeing as I am one of the few who still sails with a parent, I cannot help but feel ashamed, even when I know I should not. At this point in my life, I have opted not to sail altogether. Continue reading “Missing the Boat”
Since my eighth birthday, I had been waiting for the release of Harry Potter and the Deathly Hallows. I had become hopelessly addicted to the series after receiving Harry Potter and the Sorcerer’s Stone as a birthday gift. Initially, my mother read them to my brother, Doug, and me as bedtime stories. As I got older and my reading skills improved, I took each new book for myself and read it in a matter of days.
Having gone through the series so quickly, I was gunning my engine to read the last book and see how it ends. In spite of the sticky July heat, I came to Borders dressed in my “Gryffindor Girl” outfit: a white blouse with a black and red kilt and a Gryffindor tie I stole from Doug’s closet.
Mom had originally reserved one copy for the entire family, and through our wait to pick it up, she was yelling at me about spoiling the book. While Mom and Doug take months to finish a single book, I can easily read one in a matter of days—weeks, if I am feeling slow. For the previous two sequels, I had accidentally spoiled the books for both of them by crying over important character deaths. Continue reading “Harry Potter and the Surprise Tympanoplasty”
Anybody who asked me about biology six years ago would know my unwavering response: “I hate biology and can’t wait for it to be over!”
Biology started strong with top grades, but within a month they started declining — a consistent trend in my science classes between ages twelve and sixteen, due to an increase in class pace and my hearing loss worsening. The teacher would use strange words I could not inference and lecture while drawing on the blackboard. The strain to hear in such circumstances often ended in migraine headaches.
I thought junior year would be free from this trend, after my surgeon declared me “cured” with the success of my ninth surgery. When it turned out not to be, I blamed my poor performance on simply being stupid, until I realized that my teacher’s voice fell right within my worse frequencies. The migraines should have been a dead giveaway, considering they had a knack for arriving right in the middle of biology class. Denial and my fear of permanent disability kept me from admitting I could not hear, causing me to not get a hearing aid until after biology came to an end.
Fast forward to the year after I graduated from college; I opened an invitation to my high school reunion, initially thinking that I did not want to go. My mind changed, however, when I saw the one of the classes alumni would be able to visit: “Ms. Warren: Biology.” Continue reading “The Before and After of Biology Class”
“Christina, how do you feel about Math and Science?”
My good friend, Ben, had asked me this question while I was freaking out about my then-boyfriend, Noah—a gorgeous, brilliant mechanical engineer who enjoyed springing questions about math and science on me without warning.
These questions, regardless of how good I felt, always made my heart race and waves of nausea hit me. Every time Noah would try to get me to guess answers to questions about the pressure that lifted planes, or a concept relates to calculus, I could not escape the feeling that I was being tested to see if I was “smart enough” to be his girlfriend.
Initially, I imagined I panicked at Noah’s questions because I believed, as a hearing-impaired artist with no money or college degree, that I was not good enough for someone like him. Ben, a therapist in-training, listened to my panic long enough to see that it had nothing to do with Noah. I knew Ben hit something much deeper when I could feel my whole body groan at the words “math and science.” Continue reading “Friends, Lovers, and Reclaiming STEM”
This May marks 45 years since Let it Be, the Beatles’ last album, was released. My parents, who were 11 and 21 at the time, remember the album as the tragic marker of the Beatles’ downfall. Dad lost his taste for the Beatles after they shed their mop tops, but he was still saddened to see them break up. To this day, Mom cannot watch the film version of Let it Be without crying because the fights between John and Paul, along with George and Ringo’s frustration, were nothing short of painful.
For the past ten years, I believed I knew everything there was to know about making difficult decisions. In my mind’s eye, the hardest decision I had ever made was to stop wearing bilateral hearing aids and opt for years of hearing restoration surgery.
After the traumatic experience of being intubated awake, returning to the operating room by choice felt nothing short of insane. Yet, I knew enough to understand that I would not be able to have the life I desired without repairing my eardrums. I was already ambitious as a pre-teen, with a list of lofty dreams including attending a top college, reaching the world with music and writing, learning at least five languages, and seeing as many countries as I possibly could.
All of these goals felt heavily dependent on hearing for their execution. Though I feared surgery more than anything else on the planet, I made the decision to go for it in hopes of having the hearing necessary to make my dreams come true. Continue reading “Breaking the Surgery Mindset”