I don’t remember the first time my mom asked me to repeat myself. Even as the incidents increased over time, they were never too many to ignore. Surely we owe each other some grace, after all, in the fast urgent noise of this world. Hurried, worried, and often late, surely we’re all missing so much.
Even after I knew about my mom’s hearing loss, it was still years before I recognized it for what it was. I had seen disability defined by the Americans with Disabilities Act of 1990 — “a physical or mental impairment that substantially limits one or more major life activities,” such as hearing — on countless internship and job applications. But somehow I never considered that this term might apply to my mom.
I was introduced to the concept of invisible disability during the Office of Disability and Access’ training for peer helpers at the beginning of this semester. I remember reeling in my auditorium seat with the sudden mental vertigo of revelation, finally seeing what had been there all along. But that’s what invisibility is, after all: something you can miss even when it’s right in front of you.
For me, calling my mom’s hearing loss invisible is a way of describing its simultaneous elusiveness and omnipotence: the way it has shaped so many interactions and yet still escaped notice for so long. But my mom’s disability is invisible in technical, literal, and conceptual ways, as well.
The Invisible Disabilities Association defines invisible disability as “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.” In other words, you can’t see my mom’s disability just by looking at her; the benign tumor that causes it appears only on an MRI. Because many people think of disabilities as outwardly obvious — a service dog or a wheelchair — being literally invisible can make my mom’s disability conceptually invisible as well.
Another part of what makes my mom’s disability invisible is its degree. Her right ear is not affected and she’s adapted to make the most of her hearing on that side — reading lips, avoiding environments with too much ambient noise. As a result, her hearing loss is rarely noticed and often dismissed. To call a disability invisible, therefore, is not only to say that it remains beneath others’ threshold for perceptions, but also remains beneath their threshold for legitimacy.
Without knowing my mom, her hearing loss would be easy to miss; knowing her, it’s easy to forget. She is someone who can make anything else out of anything else: back up a trailer, bake a cake from scratch, or reset her own dislocated knee. She is not only the person who gets offered the chance to fly a helicopter — despite having no experience — but the one who says yes. To call my mom, one of the most capable people I’ve ever met, disabled seems absurd.
Maybe the biggest part of what makes my mom’s disability invisible though, is our relationship. She laughs at my puns and still cuts my hair; I know how the muscles in her neck feel after a long day at work and exactly how hard to press. Shamelessly demanding to be pampered and never asking to be helped, my mom is easy to neglect in all the most important ways without realizing it.
Though I’m closer to my mom than any other person in my life, the deficits still accumulate between us. When I forget and walk on her left side, or lower the volume on the TV by mistake, it’s hard not to feel purposely slighted. When she asks me to repeat myself the third time, I can’t help thinking she could somehow hear me if she really wanted to, if she would just try hard enough. To describe my mom’s disability as invisible, therefore, isn’t to say it’s imperceptible. It feels like indifference, like both of us caring less about each other than we do. My mom’s disability feels like being ignored.
The last of what makes my mom’s disability invisible is her own reluctance to acknowledge it. Many people don’t know about my mom’s hearing loss, and not just because it’s possible to compensate for or overcome. To say my mom’s disability is invisible is to say it’s possible to conceal.
Her reticence is understandable. Hearing loss is part of so many stereotypes of the elderly, and so for my mom it represents a double vulnerability — exposing her to ageism as well as ableism. As a woman in her sixties, it can feel like the difference between being seen as an experienced professional or a doddering geriatric; between being respected or being dismissed. As a result, my mom’s hearing loss can affect her more severely than the same objective physical limitations would for me. This is what it means to describe disability as intersectional and socially constructed; it is not just about what a person can or can’t do, but how others perceive or treat them differently as a result of that and many other factors.
Most simply, an invisible disability is one that can’t be observed visually. But a disability can also be invisible when it is minimized, missed, or dismissed; obscured by other aspects of a person’s identity, or purposefully concealed to avoid sanction. Recognizing my mom’s hearing loss as a disability — and understanding it as an invisible disability specifically — has given me a language for our experience. Examining the multiple dimensions of that invisibility, in turn, can reveal what greater accessibility might require.
When invisibility can be a function of degree, we need a more flexible definition of disability; one that acknowledges impediment as well as prohibition, and considers not just what a person can’t do, but the effort it requires of them, as well.
When invisibility can be a function of identity, we need a more expansive understanding of who a person experiencing disability is and can be; one that neither requires evidence, nor imposes expectations, of helplessness, infirmity, or dependence.
Finally, we need an understanding of disability that recognizes it as something much larger than the individual. Although many people embrace disabled status as a part of their identity, disability itself is not an inherent quality of the person themselves. Rather, it is an interaction between them and an environment in which difference becomes inhibitory. As a society, we are not only responsible for retroactively accommodating disability, therefore; we are also responsible for actively constructing it. This understanding fundamentally shifts the focus from the individual with a disability to the physical and social environment that surrounds them — implying the obligation to alter those environments, rather than requiring individuals to alter themselves.
A truly accessible space is one in which conversations about disability are both possible and optional. It means recognizing the disabilities that are not immediately obvious, as well as our own role in constructing them and the responsibility that implies; in other words, acknowledging and anticipating needs without first requiring them to be proven legitimate. It would be easy to dismiss this vision as an unattainable ideal. At the same time, it can be understood less as transformation than expansion, offering the same basic acknowledgement and care to every member of our communities that we would want for the people we love.
