By Rachel N. Levin, Ph.D.
When I was little, we routinely asked each other challenging questions. They began simply—“what’s your favorite color,” “which do you like better, chocolate or vanilla?”—and then escalated into “who do you like better, your sister or your brother?” and “would you rather be deaf or blind?”
This last question now haunts me. What were we thinking? Could we possibly imagine what we were asking?
Dr. Levin during her dissertation work in Panama. She says she is “soaked but triumphant after finally successfully trapping an elusive pair of duetting wrens” (above), so she could give them color bands for individual identification and release them, and with her recording equipment in the jungle (below).
I began my career as a biologist and professor by studying birdsong; the study of how and why birds differ in their songs continues to fascinate me. On a personal level, the sounds, smells, and sights of the natural world restore and sustain me.
As I imagined moving through life, both as a child and an adult, I took for granted certain constants in my life and, if I planned at all, chose to take a more active path, literally and figuratively, under the assumption that, at some point, I would become less mobile. I never imagined the sudden death of one of the constant anchors of my universe.
Ten years ago, I woke up to a rocking, wildly spinning world. The unnavigable rocking subsided in a few hours and I subsequently discovered that I had lost a good portion of the hearing in my right ear.
Oral steroids and steroid injections into my eardrum, often successful treatments for sudden hearing loss, did nothing for me. Over time, I learned to use what remained, and continued on in my fieldwork.
Then, almost three years to the day, the hearing in my left ear dropped dramatically, again overnight, but this time without the rocking.
Over the next few weeks, I was treated to phantom, loud, late night cricket choruses, locust calls, and white noise as my brain tried to interpret and accommodate the sudden death of my ears’ sensory hair cells.
My doctors told me that although sudden loss of hearing in one ear is not unheard of (so to speak), it strikes 5 to 20 per 100,000 people in this country alone. The cause of this type of loss is often unknown. Sudden hearing loss in both ears, such as I experienced, is extremely rare, happening in only 1 to 2 percent of these individuals.
As a result of that day, the world suddenly and dramatically changed. My hearing continued to drop for a year or two, although in smaller, less dramatic steps. I can no longer understand speech unless I am, quite literally, nose to nose with the speaker (awkward!). With hearing aids, this radius expands to about three feet (still awkward!).
Although my brain is trained to hear natural sounds as a result of my profession, I cannot hear many of the sounds that I love; I cannot hear many bird songs, the babble of a brook, or the soothing night sounds of crickets and owls. Annoyingly, I can still hear my neighbor’s rooster and raucous parrot.
I cannot recognize or distinguish any broadband, atonal sounds such as a dog barking, a motorcycle, or people shouting, and I can’t figure out where anything is coming from. Music, previously a constant companion and a source of great pleasure to me, is now a painful cacophony of clashing white noise. I cannot hear the pitch of my own voice when I sing.
With a California scrub jay.
Adjusting to this has been a painful, isolating journey of accommodation and mourning. If I can hear any part of birdsong, my brain has recalibrated to recognize it by its pattern, rather than its melody.
Thanks to an awesome audiologist and empathetic and creative IT staff at work, I have tried out and acquired high tech gizmos and gadgets to help expand my radius of speech recognition to support teaching my classes and attending meetings.
Most notable among these is the Roger microphone system by Phonak which I use full-time in conjunction with my hearing aids. I have a hearing dog from Canine Companions to help me navigate daily life and to help me feel safe for whom I am deeply grateful.
I have always loved figuring out ways of finessing around unexpected challenges (one of the many joys of fieldwork in remote places!), but in this case I deeply resented having to do any of this. Now, when I have met the challenge to the best of my ability, there are still the feelings of profound loss to be dealt with.
I have found some hidden surprises and perks to losing my hearing. I am taking American Sign Language (ASL) classes at a local community college as a preemptive strike against the profound deafness that I may experience in the future. I love learning new things and ASL is a beautiful, rich language.
My ASL teachers and tutors have been both patient and lovely and are opening doors to a whole new culture and community of which I was only marginally aware. As important as it is to allow room for grieving and anger, I also find myself on a path to a new, rich life. I am humbled and excited by the possibilities this opens to me and grateful to those who are assisting me in this journey.
I feel guilty writing any of this. For the moment, my loss is less than that of many; I still have, and cling to, some hearing ability with the assistance of specialized technology. However, I think it is useful to share this for several reasons.
With her hearing dog Locket, who is from Canine Companions.
First and foremost, this is a shoutout to and a call for awareness of people living with hidden disabilities. For someone with a hidden disability, being held to standards of behavior that you cannot meet simply because someone cannot see your disability is a constant challenge.
I was once pushed to the floor in a grocery store by an angry woman who said, “Well, I said excuse me and you didn’t move.” Do you call them out? Do you ignore them?
This is a constant juggling act that is likely also familiar to people of different nationalities and/or races, adoptive parents, pregnant people, transgender people, and others who are asked presumptive, intrusive, and/or inappropriate questions or whose behavior is judged by inappropriate standards.
In the case of invisible disabilities, there is nothing to indicate that a person may not experience the world the way that most others do. Regardless, being rude or mean is unwarranted.
I have found that lack of awareness and/or a tendency to stereotype plays itself out when I tell someone that I am hard of hearing and that I need them to face me when speaking to me or not to engage in a conversation when I can’t see them.
For example, I recently needed to use driver services quite a bit (e.g. taxis, Uber, Lyft) and found that no matter whether I used “hard of hearing,” “deaf,” or said “I recently lost my hearing,” drivers always spoke to me while they were in the front seat driving and I was in the back seat, unable to hear them.
It dawned on me that because my speech is clear and “normal,” they either forget what I said or simply don’t believe me. I just don’t meet their stereotype of what “deaf” looks and sounds like.
I have also learned that, unlike many other disabilities, being hard of hearing requires a change in the behavior of others for you to be included. People must be aware of ambient lighting and where they sit in relation to you; they must face you, at least partially; and they must speak and articulate clearly if you are to understand them at all.
This is challenging for everyone; it is hard for friends and colleagues to remember, especially those who knew you before you lost your hearing, and it is awkward for the hard of hearing person to remind them, particularly in the middle of a conversation.
However, studies have reported that a failure to be accommodated in this way can leave the hard of hearing/deaf person feeling left out and as if they don’t matter, furthering their feelings of isolation and depression.
I find that this is less a problem for me with those with whom I interact regularly. The students in my classes, for example, associate my hearing loss with being in my class, and their behavior shifted, sometimes in quite moving ways. I have yet to find a solution for this in less regular circumstances such as onetime meetings, classes, or events.
My recent experience has also made me much more aware of the lack of accommodations for anyone with any kind of disability. This makes me feel ashamed that I was less of an ally and advocate for those with disabilities before losing my hearing.
In my own case, I have noticed the lack of captioning, FM loops, and other ways of adjusting public spaces for those who cannot hear as well as a lack of recognition of the importance of such accommodations. I have experienced indifference by managers of movie theaters when they report that all of their assisted listening devices need charging, and annoyance when I ask if captions can be turned on when viewing something for which this is an option.
The lack of commitment to and understanding of “accommodations” (a word I hate) strikes me as especially egregious in places that claim to be supportive and aware, such as institutions of higher education. I am stunned that while most such institutions strive to provide services for students with disabilities, there is little, if any, institutional support for faculty and staff, especially in private schools which can often be less compliant with ADA requirements.
Finally, there is the issue of “coming out.” I suspect that this can be more of an issue for those with hidden disabilities and for those whose loss of an ability happened quite suddenly. As something of a social justice activist and a natural loudmouth, I was surprised to feel hesitant to let people know of the change in my circumstances and need for accommodations.
I am usually not afraid to ask for help when I need it, but in this case, I worried about not being given the same consideration as others when opportunities come up, either because of benevolent ableism or a judgmental assumption that I won’t be interested in and/or up to the task.
I also worried that people would feel that I no longer could do my research. This problem has been documented as being an issue for deaf and hard of hearing faculty at colleges and universities. I have been impressed at some of the ways one can work around the problems of hearing loss and deafness, and I feel strongly that those with disabilities be allowed to determine for themselves what they are able to do. However, I don’t trust that this will be the case.
In closing, I am reminded of all of the admonitions to appreciate what we have when we have it. These usually refer to engaging with your kids when they are young or showing love for, or making amends with, someone before they die.
No one warns us about sudden, profound loss of an ability. Consider yourself warned. Reach out to others whose experience of the world may be different from your own, and expand your use and appreciation of all of your abilities so that, if one of them suddenly disappears, you can continue to enjoy life to the fullest.
Rachel Levin is professor emerita of biology and neuroscience at Pomona College in California. Levin’s research focuses on animal reproductive behavior, specifically birdsong. She also studies the origins of gender identity. See the paper abstracts of her 1996 papers on duetting wrens here and here and more recently in a 2022 paper here. Contact her at rlevin@pomona.edu.
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First and foremost, this is a shoutout to and a call for awareness of people living with hidden disabilities. For someone with a hidden disability, being held to standards of behavior that you cannot meet simply because someone cannot see your disability is a constant challenge.