“Hearing research is not just about sound; it is about connection and communication. It is about relationships, emotions, and the human experience.”
This was my message at the 2025 Bellucci Symposium for scientific research at Creighton University, where I was invited to share my perspective on living with hearing loss. Through a Q&A conversation guided by Dr. Alison Coffin, an Associate Professor of Biomedical Sciences at Creighton University and the President of the Association of Science Communicators (ASC), I shared my hearing loss journey, advocacy activities, and responded to questions from the assembly.
It was an unusual presentation for a scientific symposium, where talks typically focus on scientific breakthroughs or new research methods. The people who might eventually benefit from the research are not always front and center. But perhaps they should be.
Storytelling is a powerful tool that has bred deep human connections since ancient times. It helps people to share experiences and to build community, creates empathy and trust, and breaks down stigmas. Stories can also steer public opinion and persuade.
Thank you to the organizers for including me in the program.
Putting the Person Back in Scientific Research
When I served as a Consumer Reviewer for the Congressionally Directed Medical Research Program’s (CDMRP) Hearing Restoration Research Program (HRRP), the first day of meetings started with a personal reflection by someone with hearing loss.
They explained how hearing loss had impacted their lives and how important the research we were about to discuss would be to them and their loved ones should it succeed. It helped center the proceedings on the heart of the matter—creating a positive impact for people with hearing disorders.
Including lived experience in scientific meetings is beneficial for many reasons.
Focusing on the “why” is motivating.
Personal stories ground scientists in the true purpose of their research, to help people with hearing loss. Day-to-day research activities, especially when working in animal models, can feel disconnected from this overarching goal.
Keeping the “why” behind the research can be a great motivator.
Emotions are powerful.
Hearing loss is more than just the loss of sound; it is a communication disorder. When communication falters, so do our relationships and our feelings of connection and community.
Understanding the powerful emotions of hearing loss builds empathy, helps break down stigmas, and generates support for better communication access for people with hearing loss in a variety of settings, including at scientific meetings.
Stories can help support funding.
Funding for scientific research is under attack, and because hearing loss “doesn’t kill you,” it is often one of the first areas cut. Everyone knows someone with hearing loss, but they still may not understand its consequences on day-to-day life.
Storytelling can help illuminate the full life impact of hearing loss on the people who have it as well as on their families, boosting support for this important research topic.
Looking for the “Why” at Your Next Event?
Are you organizing a meeting of hearing-related research scientists? Please be in touch. I would love to bring the lived experience perspective to your next conference or event.
Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of Living with Hearing Loss, a popular blog and online community for people with hearing loss, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Her book, Hear & Beyond: Live Skillfully with Hearing Loss, (co-authored with Gael Hannan) is the ultimate survival guide to living well with hearing loss. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, she will help others to live more peacefully with their own hearing issues. Connect with Shari: Blog, Facebook, LinkedIn, Twitter.
