A Unique Community Collaboration Brings Hearing Loss to a Popular Museum

HLAA Chapter Helps Create Dynamic Boston Hearing Loss Exhibit

By HLAA Communications Specialist Teri Breier

More than a million annual visitors to the Museum of Science (MOS) in Boston can now learn all about hearing loss. The newest installation in the 195-year-old museum’s permanent Hall of Human Life exhibit, “Hearing Loss,” explores aspects from ear anatomy to assistive technology with a variety of interactive components.

Andrea Kaneb and Jonathan Ozek view a component of the MOS “Hearing Loss” exhibit with Sylvie Rosenkalt. Photo credit: Nic Czarnecki.

This one-of-a-kind exhibit represents a unique collaboration between MOS staff and the local Hearing Loss Association of America (HLAA) Boston Chapter community. As the leading voice of the growing number of Americans with, and at risk of, hearing loss, HLAA empowers millions to thrive through education, advocacy and a nationwide network of support. Our 126 local chapters and groups around the U.S. are an integral part of that mission.

The “Hearing Loss” exhibit was conceived and sponsored by MOS trustee and longtime HLAA Boston member Andrea Kaneb, who has genetic progressive hearing loss. Through her involvement in HLAA, Andrea advocates for herself and others with hearing loss, while advising people about hearing assistive technology. She approached the MOS exhibits team in 2023 with her vision—an interactive exhibit to educate, inform and break down hearing loss stigma.

A Match Made in Heaven

“The Hall of Human Life has been a favorite at the museum since 2012, exploring different facets of bodies and what they can do,” says Kate Marciniec, MOS director of exhibit planning and operations. “A primary goal is to make this information directly relevant to middle and high school students, while matching their curriculum. We’ve found that there is great value in telling more diverse stories from different perspectives that touch on various aspects of being human. So, when Andrea proposed the hearing loss installation, it was a match made in heaven! Over one year, we developed it in collaboration with Andrea, who was a true partner from the start.”

Visitors walk past the entrance of the Museum of Science Hall of Human Life. Photo credit: Nic Czarnecki.

The project evolved from an early sound booth concept into a larger vision through a 40-person brainstorming session and a dedicated five-person core team. As the primary sponsor, Andrea wanted to be closely involved every step of the way. She helped guide the exhibit’s development from start to finish in monthly meetings over 18 months and received weekly updates.

The four phases of this process were:

1. Concept development – Brainstorming, goals and objectives, initial research online and via conversations with subject matter experts and people with lived experience of hearing loss. What is most important to communicate with visitors, and how to best engage them?
2. Experience design – A prototype was created to test concepts and components with a wide range of visitors, all ages and backgrounds, plus a special focus group of local high school students with hearing loss. How does this align with your stories and experiences?
3. Fabrication and production – Building the physical elements and recording/animating the video stories—four at the museum and six on the museum’s website.
4. Installation and testing – Placing the elements and making sure everything works properly before opening to the public.

According to Kate, this exhibit took longer than usual to allow for the human element, beyond their typical scientific approach. “We moved carefully to ensure that we were creating an authentic experience that reflects the perspectives of many individuals with hearing loss. As a result, we created something that our partners are proud of and our visitors enjoy.”

Highlighting Diverse Experiences

During Phase Two, Sylvie Rosenkalt, accessibility coordinator for MOS, reached out to the HLAA Boston Chapter’s president, Kerry Sullivan, as part of the museum’s search for diverse candidates with hearing loss to share their stories for the exhibit. Among the dozen community members Kerry referred were Jonathan Ozek, 40, and Saaim Khan, 22, a recent Harvard graduate, both of whom were selected after reviewing numerous submissions.

Kerry shares, “MOS is such a respected institution in the Boston area, so we were very excited to learn about their planned exhibit on hearing loss. It was an opportunity to raise awareness and understanding of hearing loss in our community at a scale beyond what the chapter can do. Imagine our pride when two of our HLAA Chapter members’ stories were featured in the exhibit!”

Jonathan jumped at the opportunity to participate. Since joining HLAA in 2018, his personal mission has been to reduce stigma and spread awareness about this increasingly common disability. Born with nerve damage, he is deaf in the right ear and has severe hearing loss in the left. Jonathan was discriminated against in school, which his video illustrates with an example from sixth grade.

“My goal is to help the community of people with hearing loss from my own personal experience,” he says. “I don’t want anyone to go through the same situation that I went through.”

Saaim, the son of immigrants from Pakistan, was born in Detroit and raised in Ontario, Canada, before attending Harvard University in Cambridge, Massachusetts. Diagnosed with sensorineural hearing loss at age four, he wears one hearing aid in his right ear. Like Jonathan, Saaim experienced discrimination and was sometimes bullied in his mainstream schools. After attending medical school, his goal is to become an otolaryngologist or other related specialist.

HLAA Boston Chapter Member Saaim Khan contributed two online videos on the MOS website, in addition to his animated story for the exhibit itself. Photo credit: Museum of Science

He says, “I first got interested in science in middle school, Later, in high school, I was mentored by a Wayne State professor, researching proteins related to hearing loss and existing drugs on the market. I just earned my undergraduate degree in human developmental and regenerative biology and will start Harvard Medical School in the fall [of 2025]. Eventually, I want to develop gene therapy trials to provide alternative treatment options for children with hearing loss.”

The four animated stories in the exhibit are told by:

• Jonathan, on being left out at school and finding true friendship
• Saaim, on trying to hear in the car with friends
• Charlene, who experienced hearing loss late in life, on finding connection through a familiar song
• Katie McCarthy, outreach coordinator for the Boston Children’s Hospital Deaf and Hard of Hearing Program, on sharing a meal while using ASL

The associated digital component on the MOS website, Hearing Well, was curated by Caroline Cocossa, MOS digital project manager. It features three individuals, each appearing in two videos: Saaim, Andre “Dre” Robinson, a DJ who uses American Sign Language (ASL) and a mother, Beth Leipholtz, with her toddler son, Coop, who is Deaf. This series bridges the worlds of assistive technology and Deaf culture, showing how they coexist and enrich one another.

Spotlight on Accessibility

Soon after the “Hearing Loss” exhibit opened in June 2024, it was featured at a special disability rights event in July, where the HLAA Boston Chapter staffed an information table with five of its leaders. July is Disability Pride Month, celebrating people with disabilities and commemorating the passage of the Americans with Disabilities Act (ADA) in 1990—in fact, July 26, 2025, marked the 35th anniversary of this milestone civil rights legislation that mandates public accommodations. HLAA was among the advocacy organizations that supported its passage and advised on the bill’s accessible communication provisions.

The communication component of the MOS “Hearing Loss” exhibit, showing visual communication cues with captions on a silent video. Photo credit: Nic Czarnecki.

MOS features inclusive, universal design of the facility and exhibits that welcome and accommodate visitors of all abilities. Their accommodations for people with hearing loss include:

• Assistive listening (amplified audio) systems
• Scripts and captioning for some shows
• All videos captioned in English and Spanish
• ASL interpretation and Computer Aided Realtime Transcription (CART) with two weeks advance notice
• ASL interpretation for select shows on the second Sunday of each month
• All exhibits go through an accessibility advisory committee testing to assess and give feedback

The museum is currently exploring other assistive technology, such as Auracast broadcast audio and Xander Captioning Glasses. (Learn more about MOS accessibility.)

The Power of Community Collaboration

Hearing loss is a growing public health crisis that affects people of all ages. More than 50 million Americans (one in seven) have some degree of hearing loss, and many more are at risk. The World Health Organization (WHO) expects as many as 2.5 billion people worldwide to experience hearing loss by 2050, and one billion young adults are at risk due to unsafe listening practices.

Despite the alarming numbers, many of us still don’t pay attention to our hearing as an important part of overall health and well-being. Hearing should be tested, protected and treated—crucial messages that HLAA is spreading at the national level. The organization also fights hearing loss stigma through education, a mission that Andrea took on locally in Boston (read Andrea’s story).

Andrea Kaneb and Jonathan Ozek in front of the outdoor Museum of Science sign. Photo credit: Nic Czarnecki.

“Through my involvement with HLAA and volunteering as a hearing assistive technology adviser, I began to see the many roadblocks that keep people from seeking help for hearing loss, which audiologists don’t have time or knowledge to address,” says Andrea. “I realized that information about its causes, related stigma, technology and other issues needed to reach more people in welcoming public spaces. That inspired me to reach out to the Museum of Science.”

Personal stories like Jonathan’s and Saaim’s have the power to connect more deeply and emotionally with museum visitors, generating compassion in a way that written facts don’t. Through sharing his story, Jonathan hopes “…to make the world a better place for people with hearing loss, where others understand where we’re coming from and provide reasonable accessibility accommodations at school and work.”

This unique collaboration with MOS reaches well beyond the museum exhibit—it’s a powerful community partnership inspired by a local HLAA Chapter to change mindsets about hearing loss. The more we work together to weave hearing loss information into the mainstream, the more we can reduce stigma and other barriers, together.

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