In Claudia Marseille’s memoir, But You Look So Normal: Lost and Found in a Hearing World, she shares her moving and memorable story of severe childhood hearing loss and its effects on her childhood, and even her adulthood. Library Journal starred their review of this book, calling it “A fascinating, beautifully written memoir about a woman determined to carve out a fulfilling life for herself.“ She Writes Press released this title on May 14th. Marseille’s essay below is about invisibility. It’s a powerful testimony.
Invisible Girl
By Claudia Marseille
I was finally motivated to write my memoir, But You Look So Normal: Lost and Found in a Hearing World, about growing up with a severe-to-profound hearing loss as I started to reflect back on the deep impact my loss has had on my life. Another impetus was watching many friends around me who are now dealing with age-related hearing loss and getting sophisticated digital hearing aids. They think they at last understand what I went through dealing with my lifetime hearing loss but they really have little idea what it was like growing up with a severe loss at a time of very primitive hearing technology and relative lack of awareness of hearing disabilities.
Then, I’ve had some friends tell me that when they first got to know me they thought I was a bit aloof, reserved or even “out of it”. This misreading of me is painful to hear because when I am comfortable in my surroundings, I am actually quite social and outgoing. But until people know that I have a hearing loss, they may not understand my lack of responsiveness when they talk from behind me or when they try to strike up a conversation in a noisy situation and I give a strange, off the wall response. In fact, when I was at loud parties in college, my classmates often thought I was stoned because of my periodic clueless responses to their questions. When I was finally bold enough to tell more people about my severe hearing loss, I was often told, “but you look so normal!” That answer always confused me – what did they think someone with a hearing loss would look like? For all these reasons, I was motivated to share with others an inside glimpse into my life with hearing loss.
My disability is a hidden one. When I walk down the street, and someone calls to me from behind, I don’t hear. I miss much of what is said in a discussion amongst a group of friends. When the waiter rattles off his list of specials in a loud restaurant, I will not understand. I can’t follow conversations in most restaurants. When I go to the doctor’s office and am confronted with the medical personnel wearing masks and can’t lipread, I struggle to make out what is being said. I cannot understand announcements broadcast over loudspeakers or PA systems. As a child I couldn’t chatter with my friends at slumber parties, and as I student I couldn’t participate in conversations in cafeterias, or at noisy parties. Now, as an adult, I cannot engage in pillow talk with my husband because I cannot lipread in the dark.
All my life, (until recently with significant changes in technology), I’ve also struggled to understand what was said on the telephone, TV, movies, radio, musicals, comedy shows and theater. As a teenager, because talking on the phone was so challenging, I was unable to gossip like others for hours on end with my friends. And later as an adult, it was difficult to make calls to make appointments or to get needed information. My invisible disability has affected so many aspects of my life; even my closest friends and family have no idea how profound the ramifications are.
Because it isn’t always obvious that I have a severe to profound hearing loss, people don’t realize, that in order to communicate with me, they need to face me, not whisper in my ear (as then I can’t lipread), speak articulately, and ideally, not in a noisy environment. It’s not obvious to others how I miss out on the simple day to day life activities and events that others take so for granted.
This invisibility disability was exacerbated by the fact that when I was growing up I was too ashamed to communicate my hearing loss to others; first to most of my friends, and later, to my teachers and bosses. I wanted to fit in with my peers; I didn’t want to be seen as different, strange and needing assistance. My two powerful behind the ear hearing aids were well hidden underneath my short haircut, and people simply didn’t recognize that I had a hearing disability. As my parents chose to mainstream me in the public schools I didn’t meet any other deaf or hard of hearing people until my mid-thirties. I was totally alone with my hearing loss.
In fifth grade I bombed my oral report on Abraham Lincoln in front of a large auditorium packed with expectant parents, teachers and guests. I stood totally frozen and humiliated on the stage. No one knew that, because I had a hearing disability, I needed extra help in preparing and delivering a report. Later, in my twenties and early thirties, I struggled painfully through several jobs. I tried to hide my difficulties in using the phone and my inability to understand group discussions from my colleagues and bosses. Desperately, I tried to “pass” as “normal”.
I was not alone in my reluctance to reveal my disability. In Coqual’s 2017 study, “Disabilities and Inclusion,” only 39 percent of employees with disabilities disclose their disability to their manager. Even fewer disclose it to their teams (24 percent) and to HR (21 percent). Despite the positive changes described below, there’s still a stigma on the job around having a disability and concern about how this difference might impact the disabled person’s work life. I understand this all too well.
It is hard to know exactly how many Americans have an invisible disability; much depends on how such a disability is defined. But according to the CDC, out of the 61 million adults in America that have a disability, about 10 percent of those are invisible disabilities. Such disabilities include, but are not limited to various mental disorders, chronic fatigue syndrome, hearing loss, Lyme’s disease, diabetes, heart disease, colitis, and autoimmune disorders.
My life as a hearing disabled person gradually becoming more visible became easier at age 39 with the passage of the landmark American with Disabilities Act of 1990 (ADA) and California’s “Deaf Children’s Bill of Rights” of 1994. These two important legislations require “reasonable” accommodations on the job and in the classrooms, such as sign language interpreters, telecommunication devices, closed captioning of films, optimal seating arrangements, and projection of the teacher’s notes onto a screen at the front of the room. Nowadays, in many cases, teachers are fitted with FM assisted listening devices which transmits their voice clearly into their students’ hearing aids. I have often thought with sadness how much happier and easier my childhood, school and professional life would have been if I had grown up with the supports offered in the post ADA and “Deaf Children’s Bill of Rights” era.
These two pieces of legislations also helped change the social landscape towards more awareness and understanding of disabilities. Children are taught to advocate for themselves and ask for what they need. I wish that kind of training and encouragement had been given to me when I was young. But I have greatly benefitted from this increased acceptance of differences; I no longer hide my disability and now, with hearing aid usage being so common among my peers, it is not regarded as much of a stigma to be seen wearing them.
Fortunately, some of the difficulties I suffered through in my younger years have been mitigated with the use of miraculous modern technology. First, my old, analogue single-ear box hearing aid I wore as a child has been supplemented by far superior digital ones. Understanding speech in noisy situations, always the bane in the lives of those with hearing loss, continues to be difficult. But today’s digital hearing aids have made even that somewhat easier as they can be programmed to partially block out background noise. But there is more: Bluetooth streaming from my iPhone and Zoom calls directly into my hearing aids has been a major game changer, allowing me finally, after all these years, stress-free phone and conference calls. Zoom (and other teleconferencing platforms) is also fantastic as it makes it possible for me to lipread. An assisted listening device streams sound to my hearing aids directly from the TV. And to my great joy, with closed captioning on my television, I am able, at last, to enjoy TV programs and movies.
Writing my memoir was a difficult but at the same time a healing process. It was heart-wrenching to relive old memories of the deep hurts of social isolation and loneliness that I experienced at different times throughout my life. Yet the process of writing has helped me at last release many of these distressing memories and also made me acutely aware of how far I have come. I am profoundly grateful for the significant changes in modern technology that have occurred over the course of my life. And the increased compassion, understanding and greater acceptance of disabilities and de-stigmatization of hearing loss have improved my life in immeasurable ways. In addition, with supportive family and friends, maturity and embracing painting as a profession, which is compatible with a hearing loss, I have come to peace and acceptance of my disability. I no longer hide my impairment from others, and I am more able to participate in the social and cultural life around me. Finally, I am visible.
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© 2024 Claudia Marseille.
Claudia Marseille was diagnosed with a severe hearing loss at age four. With determination and the help of powerful hearing aids, she learned to hear, speak and lipread. She was mainstreamed in public schools in Berkeley, CA. After earning master’s degrees in archaeology and in public policy, and finally an MFA, she developed a career in photography and painting, a profession compatible with a hearing loss. Claudia ran a fine art portrait photography studio for fifteen years before becoming a full-time painter. Her paintings are represented by the Seager Gray gallery in Mill Valley, CA, and can be seen on her website: www.claudiamarseille.com. She has played classical piano much of her life; in her free time she loves to read, watch movies, travel, spend time with friends, and attend concerts and art exhibits. She and her husband live in Oakland and have one grown daughter. Find out more about her memoir at www.claudiamarseilleauthor.com.
Photo by Anita Scharf
Bloom 