Just a few years ago, shortly after the first COVID-19 pandemic, my colleague and friend, Jill Shelton, who is a psychology professor at the University of Tennessee Chattanooga and also a person with visual impairment, inspired me to actively advocate for disability, specifically my hearing disability. Over the years, Jill has received an amazing amount of support from her institution, and she helped me navigate mine. The year that she was president of our common professional society, she invited me to be on panel with several philosophers and psychologists with disability, speaking not about our research, but about our lived experiences as scholars who also have a disability. We all talked with passion about our triumphs and our frustrations. This experience got me thinking about the process through which people may cultivate an identity that includes their disability. This was not an unusual thought for me since my research has long focused on developmental and health influences on sense of self.
As a person born with a congenital bilateral sensorineural hearing loss, I have worn (and camouflaged my) hearing aids most of my adult life. Until COVID-19 when people were masked, I had not truly realized how profoundly disabled I was. Up until then, having an invisible disability and a keen ability to speech-read, I had passed for a hearing person. I did not share my disability with co-workers, my students, or just about anyone except close family and friends. Honestly, I was embarrassed and ashamed about my hearing impairment and my hearing aids. I thought that people would think less of me and my accomplishments if they knew I had a disability, that I might be treated differently. I am fortunate that I have an incredibly loving and supportive husband and daughter who have been sensitive to my disability and to my feelings about my disability. However, back then, other people (including other family members) were often rude and ableist when I had difficulty hearing, whether they knew about my disability or not. You all know the experience of asking someone to repeat something only to have them shout and mime in an exaggerated “kidding” way at you. So, it just felt easier and less painful to hide my hearing deficits and to pass as best I could.
During COVID, having to live in a world where I could not speech read and when voices were muffled by distance and masks really pushed my limits. Then, when I could no longer get by in a masked classroom, when I perceived my hearing errors were getting way too obvious, and when an audiological exam confirmed my worst fears, that I’d lost even more of my hearing, I finally (after 30 years) let university administration know about my disability. I won’t go into that experience here, but suffice it to say that my experience was not unlike others who report that the reactions when sharing disability (especially one that is not visible) are often met with dismissal, disbelief, weird overcompensation, assumed co-morbid intellectual deficits, or application of the one-size-fits-all ableist attempts to understand and help. Now that I am in (almost ;-)) late middle age, I sense the effects of intersectional implicit biases of being “elderly” and being deaf. This leads to a whole new type of infantilization (and I perceive it to be worse when my hearing aids are visible). Nevertheless, this big reveal was a turning point in my life.
It was a turning point because once I had disclosed at work, to my students, and to the office of civil rights compliance and accessibility – there was no going back. Had COVID-19 not happened, I might not be here with you all! But now that I am “out” about my disability, I am so much happier and less stressed. Sometimes, I wear my hair up with my jumbo aids visible for all to see. Even with my massively powerful aids, I still miss a lot of what people say and sounds that are obvious to others. So, I now tell everyone I meet that “BTW I am hearing impaired and if I miss something, I’m not being rude, I just might need to have it repeated face-to-face because I speech read.” Most people don’t respond to this one way or the other. But recently after announcing this in a new pottery class, one of my classmates approached me and put her hand on my arm and only begin speaking when turned I looked at her. The kindness and support were quite moving. I really appreciated this.
I present my story not because it’s a unique story, but because it is one illustration of what I see as the trajectory through which our disabilities, our hearing impairments or deafness, become an integral part of who we are. You might be able to remember a turning point in your life, or a moment when you realized that being a person who is DHOH is just like being a good friend, a funny person, a great scientist or a loving child, sibling, spouse, or parent.
Being a deaf or hard of hearing person was not something that we chose but integrating that into our core sense of self is.
Our identities allow us to make meaning of our experiences by provide a lens through which our experiences are processed. When a disability becomes integrated into our identity we have developed a disability identity. Disability identity shapes the way that we see ourselves, our bodies, and our interactions with the world (Forber-Pratt et al., 2017). It also exists along a continuum. How salient or core being a person who is deaf or hard of hearing is for you is unique to you and your life history. Researchers who study disability show that in some cases the experiences of stigma and discrimination become internalized leading to many negative mental and physical health outcomes. More recent research on the benefits of disability identity integration have moved the needle from a model of stigma-based identity to one of disability pride (Darling, 2003). My husband has described my journey similarly, as a movement from embarrassment to pride (and I agree). That pride has led to activism, advocacy, and a new sense of community.
We know, as people with hearing impairments, that there is no “one-size-fits-all.” Most of us are here – at The Mind Hears – because we are deaf or hard of hearing, yet each of us has had different auditory experiences in the world, and each of us has different ways of accommodating to our hearing profiles. Our self-perceptions of our identity as people with hearing impairments varies as a function of so many things. Not the least of which being how and when we became deaf or hard of hearing, how long we have had to get used to living with disability, the support network we have around us, the many other aspects of our lives that intersect with our disability, and so on. Perhaps what is important is that each of us presents our authentic self to the world in whatever way feels best for us.
That’s where I’ve landed. Have you ever considered how your disability has influenced your sense of self? Does how you see yourself vis-à-vis your disability influence how you present yourself to the world? How has it impacted your important relationships? Do you think how and when you disclose to others is influenced by how you see yourself? When you share your disability what are some of the reactions you receive? Did you find those reactions satisfying? Reinforcing? Off-putting? Indifferent? How did they influence your disability identity? And finally, living as a deaf or hard of hearing person in a hearing world is hard – what words of kindness and compassion do you give yourself when you have a bad day? A lot of questions, I know! One last thing I’d like to share – I would not have the courage to write this blog if it was not for this incredible community (and especially Ana & Michele). Thank you.
Dr. Leslie D. Frazier is an Associate Professor in the Department of Psychology at Florida International University. Her scholarship is driven by her interest and expertise in understanding the personality and psychosocial factors that influence adaptation, especially within the context of health challenges across adulthood. Dr. Frazier’s scholarship has four foci: 1) developmental windows of vulnerability for eating disorders; 2) the MAPS model of self-regulation; 3) adult play and playfulness; and 4) the lived experiences of people with disability. Her research aims to move beyond deficits models of psychological outcomes to emphasize strengths-based factors that promote well-being and quality of life. Over the past 31 years, she has published peer-reviewed journal articles, books, book chapters, commentaries, and book reviews. Dr. Frazier has supported her research with foundation and federal grants. She has served as the Department of Psychology Graduate Program Director, Faculty Fellow for the Office to Advance Women, Equity, and Diversity (2017-2019), and as member of the Developmental Science Doctoral Training Program for most of her time at F.I.U.
Thank you for sharing this. I too am a professor and a person born with a congenital bilateral sensorineural hearing loss who “passes” very well. As a young person, I tried to hide my hearing aids, and refused to wear any from ages 14-21, which was terribly damaging to my academic and social growth. As a middle-aged adult, I got over my reluctance to reveal my disability. Despite many years at the same institution, where my disability was known and evident, I too was made to jump through hoops to get accommodations. Change comes slowly. And I am always pleasantly impressed by students and new acquaintances who make an effort to be inclusive, looking right at me when they speak for instance.
You raise an interesting question. I would say my disability profoundly influences my sense of self, since it is present in every verbal interaction I have with another person. Managing it saps my energy, it sometimes frustrates other people, and it makes it hard for me to make new friends in crowded situations, like exercise classes. I think it is one reason I am lonely a lot.
I find it particularly difficult to exist in the liminal space between communities of fully hearing and fully deaf people. The former doesn’t fully grasp the extent of my disability,. But I don’t have an alternate way of communicating like people who sign.