Into the Tunnel Vision

“Do you have any questions?” the ophthalmologist asked me and my parents, leaning forward on her rolling stool. I had just been informed that I have a genetic condition that causes both my congenital hard of hearing status and the peripheral vision loss and night blindness I was had not been aware of. Didn’t everyone have a hard time in the dark? I was also told that it slowly progresses to blindness. I searched for something to ask, but all I could think about was that previous summer when I took a short walk with my friend after sunset, to her house from mine. I kept stumbling off the unlit path, finding soft grass beneath my feet. My friend’s laughter boomed to my left and my cheeks immediately burned hot. She gestured to my uncertain walk and my hearing aids and declared, “You’re Helen Keller!” I couldn’t quite shake the remark, and sat rigidly in the patient chair. 

A vacuum whirred outside the open exam room door, informing me that it was past the clinic’s closing time. I glanced at my parents, and desperate to leave the room I had been in and out of for the past 8 hours, said, “Nope.” I left with no concept of deafblindness beyond sensory deprivation. The office did not follow up.

I soon learned that deafblindness is quite rare—according to the World Federation of the Deafblind, under 1% of the population, and it is increasingly common as people age (1). Statistically, I am insignificant. At age 16, this is how I felt. Months of denial passed, but eventually I had to recon with the question: Am I now deafblind? My vision was exactly the same the day after my appointment as it was the day before it (perhaps minus a couple rods and cones), but who I was had seemed to shift radically into something I could not recognize. I increasingly noticed myself stumbling in dim lighting when others remained confident, and questioned if my brand-new license should be put to use for much longer. To begin to address this identity crisis, I first needed to understand what it means to be deafblind. While my journey began in a clinic, there are few medical definitions, so I had no idea where to start.

I was certain that despite the prophetic joke that previous year, my life was nothing like Hellen Keller’s. Still, I quickly consumed everything I could find online about the disability rights movement and the disability community of today. I began to identify as a disabled person, but avoided further specifics. This stemmed from a lack of shared clear language about deafblindness, as well as my fear that I may truly be a part of this population. Deafblindness was terrifying, and thinking about it felt like looking straight into the ocean for the first time. It was ugly, and all I saw were limitations being added to my neatly planned life. I knew about plenty of successful people with a wide range of disabilities, but had not yet found an example of someone both deafblind and happy (spoiler alert: there are many). I typically mentioned one of my disabilities at a time, as introducing both at once was typically received with overwhelm.

The moment I reveal my disability type is critical, as I want to communicate how I experience the world instead of just creating more incorrect assumptions. Yet, owning an identity as deafblind often makes me witness nondisabled pity and creates further misunderstandings. I spoke to another scholar and identified as deafblind and was told, “Wow! I have never met someone like you who made it to college!”  I had instantly recoiled, feeling hot magma in my chest. In one sentence he made it clear that I was not supposed to succeed. I deeply resented him for this. Who was he to assume what I was capable of? People with little interaction with deafblind people think all are completely deaf and completely blind, and it no longer felt realistic to use this label. It felt wrong to claim the term deafblind when I can communicate verbally and visually. Perhaps it is internalized ableism or perhaps I am tired of explaining that yes, I can hear you right now but I do need you to put the captions on and no, I do not drive but please be patient with me when I go into dark spaces for the first time; these small, frequent misunderstandings makes me feel less known than when they assumed I was fully sighted and fully hearing. I want to express my identity in such a way that makes me feel more understood by those I share it with, not less. I have never sought or expected pity, and the way I experience my surroundings are no reason to elicit such a response.

Another option I have is to identify as having hearing and vision loss. However, the idea of “loss” is complex in Deaf culture, which views deafness as a positive opening into Deaf culture. I like this idea, because while I do want to acknowledge the aspects of my disability that are frustrating and the moments that are difficult to navigate and communicate, I do live a complete life. I sleep better because I get to take off my hearing aids and rest in quiet. More important to me, I can truly demonstrate respect to a person when listening to them talk because when I am focused on a conversation, it is my whole world. By design, I block out other distractions. It feels inaccurate to stop at the descriptor “loss.” Plus, I have always had the same levels of hearing; I had never lost it, it simply was not there in the first place. It would be like saying I had “scuba diving loss”; just because other people had experienced it doesn’t mean I felt like I was missing out.

The most objective definition I have is to share that I have Usher’s Syndrome. This still does not fit, because even though it is true, I do not align my disability identity with my medical diagnosis. Declaring that I have Usher’s Syndrome feels as if I contextualize myself within physicians’ ideas and see my disability as syndromic of a problem. To do so makes me imagine being a literal model for medicine, walking down a runway in an ill-fitting paper gown. My hearing and vision are limited compared to my peers, and this can offer frustration at times, but I no longer spend time anxiously awaiting a cure. None of these declarations fit.

Hence, I am often left with “I am hard of hearing and have peripheral vision… stuff.” An altogether unsatisfactory response.

If Only You Walk Long Enough

I thought perhaps I could find the validation I sought in legal definitions, yet my insecurities and uncertainties are mirrored in U.S. policy, representing a nation unsure of what to do with deafblind people. The Helen Keller National Center Act, introduced in 1967 to create a center to support deafblind people, defines deafblindness as a combined certain severity of vision and hearing loss (measured with the use of assistive aids), and “extreme difficulty in attaining independence in daily life activities, achieving psychosocial adjustment, or obtaining a vocation” (2). While the first criteria require medical providers’ measurement, the last is entirely social, and frankly, tied to the accessibility of the world around them, the attitudes of the people around them, disability policy, luck, and other forces out of any one person’s control. It is unclear just how psychosocially maladjusted one needs to be to count as deafblind and on what tool people are assessed against to determine this status.

As a hearing aid user who understands speech effectively with their use, I am disqualified here as not “deaf enough.” I have hearing aid batteries stashed in every bag, wallet, suitcase, sock drawer, and pocket to avoid being deaf enough that people find my level of hearing to be inconvenient. I work to be “hearing enough” on a daily basis just to be included, despite how this conflicts with my identity as a hard of hearing person. Bluntly, this law asserts one must be viewed medically and technologically as a lost cause after exhausting their assistive options, and as I have not, I am not deafblind enough.

However, this law also declares a person can be deafblind if they have the “prognosis” to become deaf and blind, or expect to one day. As prognosis is, in creative terms, the physician’s art of clairvoyance, this law gives the power to medical professionals to assess who will eventually lose their vision and hearing. It does not include anyone who may lose their vision and/or hearing through accidents, illness, age, or any other means. It would be absurd to consider any one fully hearing and sighted person deafblind just because they have minute odds of being involved in an accident leading to sensory loss—yet, anticipated disease progression of another person is seen as fact, or more accurately, a social death sentence.

Similarly, the Individuals with Disabilities Education Act of 1975 (part B, section 300.8) states deafblindness includes: “concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness (3). Deafblindness, through these definitions, is increasingly seen as systemic within the individual, affecting the senses, mind, and development—however, there is little challenge of the systems outside of the individual. It is not enough to be deaf and blind, but a deafblind student must also have needs that a typical classroom is not equipped to provide. While developmental disabilities may or may not have a fundamentally different etiology than deafblindness in any one person, the roots and social treatment of the disability types are forever intertwined in discussions of capacity and independence. I am not proud to admit that well into my diagnosis, I too held ableist beliefs that deafblind people could not be independent, and that such a fate was negative.

The IDEA definition never served me as a high schooler and college student aiming for As in every class. Sure, I have had difficulty in education settings because of inaccessible environments; poor acoustic classrooms, mumbling students, educators speaking while facing the blackboard, and tiny print readings have all required me to find other ways to gather necessary information. While I often self-accommodate, it does not always work. The first day of college orientation, when walking on a new campus at night, I tripped down a small set of brick stairs and badly scraped my shin because I did not see it while struggling to read lips in a conversation with my new peers (I stubbornly refused to learn anything in this process and terrified my RA on his first night on the job). Still, while these are frustrating challenges, I see them as surmountable. The IDEA links deafblindness with extraordinary needs, separating deafblind kids from nearly all others. I am genuinely curious about what it means to be unable to accommodate a student, and it hurts to imagine the isolation this must lead to. I never had this experience, and to call my experience with deafblindness equivalent to others’ seems fraudulent.

Yet, I cannot agree with a definition that requires a person to suffer under exclusion to be deafblind. I aim for a more accessible and inclusive world, and this should not invalidate deafblind identity. The National Center on Deaf-Blindness (NCDB), which succinctly defines deafblindness as “a rare condition in which an individual has combined hearing and vision loss, thus limiting access to both auditory and visual information” (4). I do meet the criteria set by the NCDB, as I cannot hear the high pitches of my cat’s meow, read small print, quickly navigate a dark movie theater alone, perceive perfectly straight vertical lines, or reliably respond to friends waving to the side of me. My access to the auditory and visual environment is restricted as compared to my peers. According to the NCDB, I am deafblind. I am comfortable with this definition. But this is not the end of this examination.

It’s Always Tea Time

There are many more definitions of what it means to be deafblind from an outside perspective than can fit in any one document. An often-ignored perspective is the one with the most lived experience. DeafBlind culture flourishes-- the capital D and B indicate a connection to this culture, extending what it means to be DeafBlind beyond deprivation of senses into a world of touch. Originating in Seattle, WA by DeafBlind people, protactile (PT) is a new mode of communication that relies on feeling hands in one’s own, along with on the back, knee, and chest (5). This is the only mode of communication that cannot be meaningfully recorded. Audio, written, or visual recording cannot suffice as they cannot recreate touch. Technology built to serve hearing and sighted people cannot reach this language. DeafBlindness, often viewed only in terms of deficit, leads to modes of communication that surpass those that hearing and sighted people rely on. This is essential innovation. Protactile rejects the struggle of using a system not built for DeafBlind people. It differs from tactile sign language, where the deafblind individual feels a signer’s hands, but a sighted signer is not expected to receive through touch—leaving the deafblind person with no real time feedback and uncertain if they are being listened to at all. A core principle of protactile is reciprocity, which calls all to respond through touch even if communicating as or with a sighted person. This allows for a continuous communication, and also sets the people involved as equals. While protactile communication eludes recording, it is open to anyone who learns. At last, DeafBlind people have a new opportunity for access, inclusion, and community building.

As Tactile Communications states, ”DeafBlind people know what it is like to be DeafBlind—no one else can truly capture the experience.”5 As such, I must reject outside notions of what it means to be d/Deafb/Blind, as deafblindness has demonstrated itself to be elusive of normative culture, as disability often is. I aim not to disqualify anyone from this culture or experience, but seek instead to bring together those with shared experiences that affect our senses. Every deafblind person has unique communication desires and needs. Some of us rely on our sight. Some of us rely on hearing, or touch, or a combination of the above.

Through community I have found love for my disability experience. Where medicine has identified tragically unsolvable problems, I have found kind individuals with shared experiences. I met one of my good friends by simply approaching her on the street to compliment her glittery green cane, which led to coffee hangouts, dinners, and parties together. With my disability community (and this includes my nondisabled friends who “get it”), I feel the wholeness that is critical to disability justice (6). I am hard of hearing. I have low vision. I have found a home in the disability community.

This past summer, things at last clicked into place. Seven years after the summer of diagnosis, I volunteered at a camp for DeafBlind adults in my state. I worked with a wonderful woman who showed me that not disability nor age will slow her down. One afternoon, we sat at a craft table stringing textured beads when another camper tapped on her shoulder and introduced himself. I watched their conversation and saw her respond, sharing her name and telling him I was also here. I saw her sign, “I am working with Caroline, and she is also DeafBlind.” My chest tightened, and then released. There is no law that can tell me who I am. I am recognized as DeafBlind by others who I recognize as DeafBlind. I cannot think of a betterwelcome into a group. Something that once haunted me has become home.

My identity does not lie within legal language or medical fortune telling. My identity is shaped by myself and the people around me. I cannot contort my experience. I consider myself part of the DeafBlind culture simply because it reflects who I am. I stay updated on our news. I am a direct stakeholder in what happens to us. Deafblind policy affects me personally. The treatment of deafblind people affects me personally. Even as my identity is often invisible, even if I occasionally forget, this will always be true. I am DeafBlind.

I have found more spaces I am included in than ones I am excluded from as a result of my vision and hearing differing from the norm. My first introduction to deafblind people was a conference room full of us, which was wholly overwhelming. Yet, I felt comfortable taking up space there. Since the very start of the process of accepting my disability, I have found new doors that lead to activist circles, to disability studies, and to meaningful conversations with people I love confronting our shared fears and joys. I found a community that would laugh with me about the experiences of sleeping through noisy streets, understand my frustration of being ignored at a physician’s office when I describe Usher's syndrome (and the experience of watching said physician Google the condition in front of me), and relate to my hatred of glass coffee tables that leave us with shin bruises. Ableism has shut me out of plenty of normative rooms, but my education has broadened enormously through the disability community.

Four years after my first long day of testing at the ophthalmology clinic, I received a follow up call with my genetic test results from the blood draw they took. I had just woken up and was still in bed, and I had set my phone on speaker phone to compensate for my hearing aids resting on the other side of the room. The genetic counselor gently broke the news to me that, yes, the testing had found that I did have Usher’s syndrome. Before she could reiterate the definition of a recessive gene, I burst out with a laugh. Oh, you’re just now catching up? I had known this fact now for the majority of my college experience. I had put this information on all of my medical records for the past 48 months. It was absurd to hear someone so seriously inform me of something I knew to be so true. Of course, many future medical professionals who did an incomplete read of my chart would ask me if I had ever heard of Usher's Syndrome, once again eliciting my laughter. It was as if someone compassionately informed me I had light brown hair, or gently let me know I was 5’2” tall. This genetic test certainly did not define my experience, much less bring more information. I remained just as disabled as the day before, with no meaningful change to my life.

No provider has ever diagnosed me as deafblind— my chart mentions I have low vision and am hard of hearing, but we know these are not the same. Deafblind is a word used in ophthalmology and audiology clinics, especially patient rooms that I am in, but it is not a diagnosis. It surrounds my Usher’s syndrome diagnosis and reaches far beyond it. While I do not wish for providers to determine my deafblind status for me, I wish for my teenage self that they had offered it as an option. I spent years of my life doing anything to avoid being considered deafblind because I had only ever associated it with losing touch with the world around me. I had never been offered the idea that it would in fact bring me closer to the sensation of touch and to care more deeply for those around me. I did not know there were others like myself.

Existing definitions focus on the rarity of deafblindness and the exclusion deafblind people must face to qualify. To move forward, deafblindness must be a real, meaningful option for identity. It may have changed my life if, on my diagnosis day, after I refused to ask any questions about what my genetic condition meant for me, my doctor told me there was a DeafBlind culture. Many providers have had opportunities to make me aware of the communities that DeafBlind people form and of the awesome innovation disabled people lead. These moments could have equipped me with the tools I needed to build my own bridge into DeafBlind culture. Better yet, I could have been equipped to build a bridge to support those that come after me. Despite the missed opportunities, I work to do as disabled people have done for centuries in spite of the world around us: forage, build, fortify, extend.