The Onset of Meniere’s Disease: A Life Turned Upside Down
My mother was a vibrant musician and piano teacher, her life deeply intertwined with sound and music. But in her adult years, everything changed when she was diagnosed with Meniere’s disease. This invisible disability, characterized by vertigo, hearing loss, and tinnitus, struck without warning. Overnight, her ability to hear clearly and maintain balance became unpredictable. For someone whose life revolved around music and teaching, the loss of her hearing was devastating. The disease didn’t just affect her physically; it challenged her identity and forced her to adapt to a new reality.
The Struggle in the Classroom: Accessibility Challenges
As a professor and historian at multiple tier 1 research universities in the US, my mother’s career was built on communication and connection with her students. However, Meniere’s disease made teaching in large lecture halls nearly impossible. She couldn’t hear students’ questions or engage in discussions, and despite the existence of the Americans with Disabilities Act (ADA), securing accommodations was an uphill battle at every institution. She needed tools like real-time captioning services for lectures, assistive listening devices for one-on-one interactions, and note-taking support to ensure she didn’t miss critical information during meetings or seminars. Yet, at each university, she faced the same systemic barriers: delays, inadequate solutions, and a lack of understanding about the needs of someone with hearing loss.
The Fight for Accommodations: A Demeaning and Frustrating Process
Requesting accommodations as a professor who is hard of hearing or deaf should have been straightforward, but for my mother, it was anything but. The process was not only frustrating but also demeaning. She was often made to feel like she was asking for special treatment rather than the basic support she needed to do her job effectively. At each university, she faced resistance from administrators who seemed more concerned with minimizing costs than ensuring accessibility. Colleagues, some of whom were unsympathetic or uninformed about invisible disabilities, viewed her requests as burdensome.
This created tension in her workplace, with some coworkers resenting the accommodations she fought for, as if they were privileges rather than necessities. The emotional toll of constantly having to justify her needs and defend her right to equal access was exhausting and isolating.
The Unpredictable Nature of Meniere’s: Vertigo and Teaching
While my mother didn’t request accommodations for vertigo—knowing that an attack could strike without warning and render her unable to teach—it added another layer of stress to her professional life. She lived in constant fear of an episode occurring during a lecture or meeting, which would leave her unable to continue. The lack of institutional support for this aspect of her condition meant she often had to push through symptoms or rely on the understanding of her students and colleagues, which was not always forthcoming. This unpredictability made her feel like she was walking on a tightrope, never knowing when her body might betray her.
A Turning Point: Cochlear Implants and Assistive Technologies
After decades of living with progressive hearing loss, my mother decided to get a cochlear implant. This decision was life-changing. The implant, combined with assistive technologies and apps, restored her ability to hear and interact with the world in ways she hadn’t experienced in years. She could once again enjoy music, engage in conversations, and even return to teaching in a modified capacity. These advancements not only improved her quality of life but also highlighted the transformative power of technology in addressing accessibility challenges.
Lessons Learned: Advocacy and Awareness
Living with a mother who has Meniere’s disease has taught me the importance of advocacy and awareness for invisible disabilities. Her journey underscores the need for greater understanding and accommodations in both professional and personal settings. Invisible disabilities like Meniere’s disease may not be immediately apparent, but their impact is profound. By sharing her story, I hope to shed light on the challenges faced by those with invisible disabilities and inspire others to create more inclusive and accessible environments for everyone. The fight for accommodations shouldn’t be this hard—especially in institutions that are supposed to lead by example. It’s time for systemic change, starting with a commitment to truly understanding and addressing the needs of individuals with disabilities.
