“Does my dress look ugly on me, Bella?” my older sister asked me as she turned to look in the mirror. We were in Manhattan for her final wedding dress fitting.
I smiled big and nodded. “Yes,” I said. “It’s so perfect for you.”
I realized I’d misheard her question when her shoulders fell and she put her hands over her face to hide her tears. “You’re supposed to lie to me, Bella,” she said. “You’re supposed to say I look beautiful.”
“I’m so sorry,” I told her. “You look gorgeous … stunning. Honest!”
My sister knew I was hard of hearing. She was used to my constant interjections of “What?” and “Huh?” But I felt bad for needing people to repeat themselves so many times. I wore hearing aids off and on as a child, but my hearing would fluctuate, and at times I was able to get by without the aids. Though I knew I needed a new pair as an adult, my insurance did not cover the cost.
My inability to hear felt especially embarrassing when it happened around people who weren’t expecting it, so whenever I was in public, like at that dress store, I’d simply guess what others were saying. I was self-conscious because, as someone with a facial difference, I already felt judged for being different.
I was born with Crouzon syndrome, a rare craniofacial condition where the bones in the head fuse prematurely. Growing up, I had dozens of operations to expand my head and face. These operations saved my life but altered my appearance. So while my facial difference automatically reveals that I am “different,” what you can’t tell from looking at me is that I am also hard of hearing. And if you’re not looking at me? Well, I probably cannot hear you.
Though hearing loss is one of the possible side effects of living with Crouzon syndrome, it’s also extremely common for individuals not living with a craniofacial condition. About 37 million adults in the United States experience difficulty hearing. Roughly 80 percent of individuals with hearing loss would benefit from using hearing aids. Yet the National Institute on Deafness and Other Communication Disorders reports that only about 16 percent of adults with hearing loss ages 20–69, and 30 percent of individuals over the age of 70, have used a hearing aid. Given the exorbitant cost of hearing aids—thousands of dollars per pair—along with the income gap between disabled and nondisabled individuals, these rates are not surprising.
When I tell people about how I went for years without hearing aids, they are shocked to learn that most insurance companies don’t include the devices in their coverage. The American Speech-Language-Hearing Association proclaims that while many states require insurance companies to cover the cost of hearing aids for children, only Arkansas, Connecticut, Illinois, New Hampshire, Wisconsin, and Rhode Island require coverage to include hearing aids for adults. However, not all insurance plans are required to abide by such regulations. Original Medicare does not cover the cost of hearing aids, maintenance, or hearing exams in any state. And while other public insurance plans sometimes do provide coverage in states where it isn’t required, these plans can be very difficult to qualify for. For example, Medi-Cal—Medicaid for individuals in California, where I live—offers coverage for hearing aids. But it requires that beneficiaries be at 138 percent of the federal poverty level in order to qualify, which means making under $17,609 per year as an individual. I had a master’s degree and was working full time in higher education—I made too much money to qualify for the plan, but not nearly enough to pay thousands of dollars out of pocket for the devices. Not to mention the cost of batteries and filters that needed to be changed every few days. Or the cost of testing and follow-up appointments. Outside of my 9-to-5 job, I freelanced as a writer and took on odd jobs whenever I could in order to try to get to a place where I could afford it all.
The effect of not having hearing aids can be profound: When left untreated, hearing loss causes increased anxiety, depression, and isolation. It affects individuals’ feelings of safety, their levels of confidence, and their relationships. I spent years avoiding people and situations due to my fear of being unable to hear what was being said. I misheard directions at work and struggled to follow along in classes. For some, the impact can be even bigger—untreated hearing loss is also linked to higher rates of dementia. Though hearing loss is a public health issue, patients—myself included—are typically left to fend for themselves when it comes to accessing the care they need. Though I felt regularly humiliated by the barrier a lack of hearing aids created, I forced myself to do the best that I could. What choice did I have? I lived in limbo.
Then, in 2019, eight years after the incident at the dress store, things changed. That spring, after years of writing and pitching essays and articles trying to raise awareness about Crouzon syndrome and face equality, I got a six-figure book deal. I cried when I found out because, for me, it was life-changing. I was fulfilling my lifelong dream of writing a memoir about growing up with a facial difference. I was also going to finally be able to afford hearing aids. It meant being able to access and participate in the world in a way I wasn’t able to without them.
I will never forget being in the audiologist’s office and trying on a sample pair. For the first time in years, the hum of silence that rattled around in my head was gone. I was able to hear the faint rush of cars on the nearby highway. It felt like freedom. I never wanted to take them out.
Growing up, I fantasized about what I would do with the money if my dream of ever getting a book deal came true. I dreamed of buying a small house with a garden in the backyard. I didn’t expect the money to have to go toward hearing aids and medical bills. But when I put my hearing aids in and connected them to my cellphone to call my sister, it all felt worth it. “I can hear you!” I shouted excitedly into the phone when she answered. We laughed together.
Something else happened shortly after getting the hearing aids: Much of the country—and the world—went into lockdown. Though COVID-19 has been devastating in so many ways, many people with disabilities like me have been able to access and participate in the world in ways we weren’t able to before. Virtual events, like those that will comprise much of my book tour later this fall, don’t require participants to leave their homes or try to figure out whether they can maneuver potentially inaccessible venues. (Titled a A Face for Picasso, my memoir comes out in November.) The use of videoconferencing platforms helps normalize the use of sign language interpreters and live captioning—something I rely on for every meeting, even with help from the hearing aids. How sad is it that it took a pandemic and a huge book deal to finally feel like I could participate in the world the way my hearing peers are able to?
I simply got lucky. People with disabilities shouldn’t need a master’s degree, full-time employment with benefits, and an outside book deal to be able to afford assistive listening devices. Being able to communicate and participate in the world around you shouldn’t be such an extreme privilege.