Can you please repeat that? Hearing Loss in the Academy

At a recent conference, a colleague who knows me well leans over to me during a keynote session and whispers something. I immediately face her and quietly say, “I can’t hear whispers, especially not with your mask on. Do you mind pulling it down so I can see your lips and repeat what you said?” She straightens, slightly flustered, and apologizes, pull-ing down her mask to ask me her question. I reply, the keynote continuing in the background. After the session, she apologizes: “I sometimes forget that you’re deaf!”

I was born with bilateral congenital sensorineural hearing loss. My level of loss has progressed from mild-moderate loss as a child and adolescent to moderate-profound loss as an adult. I received my first pair of hearing aids at age four and have worn hearing aids ever since. My mild level of loss in childhood meant that I did not receive any services or require accommodations in the classroom. Reflecting back, I realize that small, inadvertent things I did as a child, such as standing in a certain spot behind and to the left of my dance teacher, were my own way of accommodating for my hearing loss. I do not lip-read formally; rather, I can have a conversation with my son (age seven, same type of hearing loss that I have and wears hearing aids) across a loud, busy play area simply because we both have learned to look at a person’s mouth for improved speech comprehension.

I became more aware of the “inadvertent” self-accommodations in graduate school. As I was studying to become an occupational therapist, I learned about the social model of disability, disability policy, individu-alized education plans (IEPs), and assistive technologies. I started asking my audiologist about hearing aid technologies and assistive devices that could improve my ability to listen to music and recorded lectures. After graduation, I quickly discovered that clinical practice was not my passion. I then pursued a career in academia and research, completing a postdoctoral fellowship and becoming tenure-track faculty at the University of Missouri in the Department of Occupational Therapy. I teach and coordinate the research-related courses in our graduate occupational therapy program. Most of my time is spent conducting research: writing grants and manuscripts and overseeing staff and students conducting research studies. As my hearing loss has progressed to moderate-profound levels, I do have accommodations in place as a faculty member. I am only scheduled to teach in specific classrooms that facilitate hearing and understanding my students. I also use neck loop “headphones” for video conference and teleconference calls—all technology covered under the Americans With Disabilities Act of 1990 (ADA) provisions for faculty and staff.

My identities as an occupational therapist, person with hearing loss, and graduate faculty member intersect in myriad ways. There are two distinct themes—“Forgotten Disability” and “Disability as a Collaborative Effort”—the first echoes my experience in childhood and is reactionary in nature, and the second reflects my personal growth with hearing loss and learning how to advocate for myself as well as others. Both themes demonstrate how my identities are intertwined and how they shape my perspective on disability advocacy, occupational therapy, and the academy.

Though my disability may not be a “hidden disability,” my high level of daily functioning and independence means that my students, col-leagues, friends, and others with whom I interact often “forget” that I am deaf. Wearing my hair down during a meeting or other interaction means that those who do not know me are unable to see my hearing aids (which act as a visual cue to many). When requesting and setting up accommodations for teaching and meetings, my colleagues and administrators were very open and understanding. Occupational therapists frequently work with their clients during the accommodation process at school and work and are familiar with the ADA. However, accommodations are often viewed as a one-time, quick-fix solution to a problem, rather than a fluid, adaptable process that may require tweaks, adjustments, and new solutions when the circumstances change. For example, when COVID-19 forced a shift to virtual/online meetings and teaching, I was able to secure my aforementioned neck-loop headphones and thrived during virtual meetings. With the audio going straight into my hearing aids, the clarity of speech was incredible. Over the past year as we have returned to in-person meetings and teaching (with and without masks), my level of speech comprehension has dropped substantially. I have struggled to find appropriate accommodations and often rely on students pulling down their masks to ask questions in class or having a colleague text me important points during a meeting. I am grateful that my students and colleagues are willing to accommodate me; however, it requires continual advocacy and asking on my part. The cognitive load often becomes overwhelming for me.

It is this cognitive load and burden put on the individual with a disability that is central to the second theme, “Disability as a Collaborative Effort.” I teach evidence-based practice in our curriculum and I repeatedly emphasize to my students that client values and goals are inherently central to the decisions they make as practitioners. However, it is more than just listening to the client; collaboration is not a dichotomy of provider/client. Collaboration also happens at the organizational level. As the chair of the Persons with Disabilities Committee on campus, I lead our group in advocating on our campus for procedures, policies, trainings, and education that move disability and accommodations from the person level to something that is contextual and intersectional. For example, we have advocated for universal design approaches in training faculty for teaching online, held multiple events with student groups on hidden disabilities, and provided training for faculty in how to accommodate students with disabilities during emergency situations.

From all of my experiences as faculty with a disability and as an occupational therapist, I share a few recommendations. First, for other faculty with a disability, continue to advocate for yourself and make no assumptions about acceptance. Even in fields such as occupational therapy or special education, people without disabilities can still struggle to implement accommodations. Second, for administrators and organizations, accommodations are not a one-time fix. Agile solutions are necessary. COVID1-19 is a great example of a disrupter and challenger to approaches and solutions we may think are flexible. Lastly, for special education and health care professionals: “Nothing about us without us.” This theme was and continues to be central to the national fight for disability rights. Remember that true client-centered care is collaborative and not an us-versus-them relationship. This was most recently demonstrated by my audiologist. My old pair of hearing aids had started to flake out, so I messaged my her through my health care portal. After a string of maybe 10 messages back and forth, we had ordered a new pair of hearing aids and set a date to have them fitted. When I saw her in the office, I jokingly made a comment that not many of her patients could do what I did to order a new pair of hearing aids. She looked at me seriously and said, “I may have 15 years of experience as an audiologist, but you have 33 years of experience living with hearing loss. You know what you want and need from your hearing aids.” Her statement has stuck with me and continues to influence my work as an occupational therapist and provides the fuel to continue to advocate for my needs as faculty with hearing loss.