Advocacy for access

When Zandy Wong was 12 years old, she heard birds chirp for the first time.

Born with oval window atresia, which causes damage to the middle ear and prevents sound from reaching the cochlea, Wong has approximately 90% hearing loss in her left ear. After receiving a bone anchored hearing aid, or BAHA, allowing sound to bypass the damaged middle ear, Wong's world was opened further—to birdsong, to the sound of hair rustling behind her ear, and to new opportunities. The technology in the implant is what led her to pursue a career in science and STEM.

"I really wanted to be discovering science and technology that could help people with disabilities thrive and live with grace," Wong says.

When she found Johns Hopkins, she says she fell in love with the campus and the university's hearing loss research. As a first-year student in the fall of 2020, during the height of the COVID-19 pandemic and at a time when instruction was primarily remote, she found herself advocating for necessary accommodations—getting letters from her audiologist and working with professors to secure human transcriptions on Zoom lectures, for example. With the return of on-campus classes in the fall of 2021, she advocated for clear face masks to help her read her professors' and teaching assistants' lips.

But it wasn't always that way. She, like many other students with disabilities, was initially reluctant to request accommodations when she entered college.

In a national survey by the National Center for College Students with Disabilities conducted across seven different focus groups of college students with disabilities, students in all the groups described interactions with faculty who lacked knowledge and awareness of disabilities or projected negative attitudes about student accommodation requests.

For these and other reasons, some students choose not to report their disability to their college or university at all. A study conducted by the National Center for Education Statistics within the U.S. Department of Education's Institute of Education Sciences found that, among respondents who indicated that they had a disability, only 37% of them reported their disability to their college.

"You don't always want to go by your identity as being disabled—sometimes you just like to be a normal student," Wong says.

When Wong found her voice and found herself in the position to fiercely advocate for access, she decided to use it to create awareness of accessibility measures within organizations and higher education institutions that make a more equitable experience for other people with disabilities.

Her advocacy work is varied and vast, and in recognition of her efforts, she's been named one of six national winners of the Heumann-Armstrong Educational Award through the Coelho Center at Loyola Marymount University. The award, which provides a platform for students with disabilities who are paving the way for equal access in educational settings, is named for Judith Heumann and Elijah Armstrong, who faced access issues when they were in elementary and high school, and were removed from their classrooms because of their disabilities.

"To have an award that recognizes our efforts is so important, and I'm really just overjoyed to win it," Wong says. "It's a recognition that my work matters, and that I'm on the right track in being both a scientist and an advocate."

While she initially came to Hopkins as a neuroscience major to study the science behind hearing loss, she changed her major to public health after a policy fellowship she received with the Hearing Loss Association of America. Being at the forefront of research was exciting, she says, but she also found fulfillment in providing the intangible data she says comes from advocacy and storytelling. Her switch to a major in public health offers her what she calls a "holistic approach" to conduct scientific research that can be applied in policy settings and programs to help uplift the disability community. She currently conducts auditory neuroscience research under the guidance of Amanda Lauer and social media accessibility research under the guidance of Nicholas Reed.

Wong hasn't limited her education to the classroom, either. She has studied a broad scope of accessibility issues, such as the use of alternative text for photos for those who use screen readers, through courses offered on online platforms like LinkedIn Learning. It sparked an even greater passion for advocacy. She found herself asking: "I have all this knowledge, and I have advocacy skills to help people, so why don't I help other people as well?"

She's now involved in a range of initiatives to promote accessibility awareness and assist those who are disabled. She is the founder of the NextGen Accessibility Initiative, an organization which partners with Generation Z-led organizations to make their content fully accessible for young audiences; through the initiative, Wong has helped create accessible educational content for over 200,000 students across 119 countries.

"What I'm really trying to focus on with my work is a kind of coalition building, turning that 'other' into 'all' and making the responsibility to everyone to build universally accessible classrooms and experiences," Wong says.

She has also represented the U.S. as a global youth ambassador to the HundrED Foundation, helping shape the future of education innovations and researched the inequitable digital public health response to COVID-19 as a Coelho Law Fellow within Loyola Marymount Law School's Coelho Center for Disability Law, Policy, and Innovation. Additionally, she currently serves as the Maryland/D.C. representative to the Council of State Governments' working group where she works with policymakers to create federal and state policies that help young people with disabilities transition into higher education and workplace settings. She was also a Congressional Intern in U.S. Representative Katie Porter's office where she contributed to ongoing legislation related to mental health parity. And she's working with the Yang Tan Institute on Employment and Disability at Cornell University to create a national accessibility tool kit for young people.

Tessa McKenzie, a senior assistant director for life design in student disability services and international engagement, has worked closely with Wong, and sees how Wong's interests can effect meaningful change. McKenzie works with students to achieve their goals regardless of their background and encourages them to see their identities as assets in their personal and professional journeys. And while McKenzie is helping students see their potential, she learns a lot from the students she works with—including Wong.

"The term 'disabled' did not resonate with me until a conversation I shared with Zandy," says McKenzie, who has an inflammatory brain disease called autoimmune encephalopathy. "I preferred identifying as 'differently abled' until Zandy expressed the pride and empowerment she has found in her identity as a person with a 'disability.' Reclamation of that label has been a powerful part of my story that I can now impart to my students as well," McKenzie says. "Her example encourages us all to consider our own gifts and identities in fostering spaces in which everyone can thrive."

To unwind, Wong enjoys running, composing piano music, and continuing her mission to try cream puffs in every state in the U.S.—so far, she's tried cream puffs in six states. She's also involved in several on-campus organizations, including the service organization Alpha Phi Omega, whose members she initially met during her first campus visit. But her advocacy work really does fuel her, and she hopes to make a meaningful difference with her efforts.

"My dream is to help create the world that younger me dreamed of," she says. "I really want to create a world where accessibility is universal and having a disability is celebrated. In many ways, I'm proud to be disabled and I've been really grateful for the experiences I've had."