Call Me Disabled
An Essay on Disability Identity and Navigating Medical Gaslighting
Have you ever watched a movie where someone drowns? The scene is always positioned from the drowning character’s perspective and the viewer is drawn in with them: under the water; slowly drifting farther and farther away as blackness begins to engulf. Its oddly peaceful, and you almost feel as if the character accepts their fate, when suddenly they are jarred back into the light as the scene changes perspective to the past or maybe to the future. I have experienced that type of drowning, but the slow creep of darkness happened on dry land, and I have never been completely shocked back into the light.
Dramatic, I know. As a student of literature, I love a dramatic tale. Unfortunately, my story of visual impairment and my journey through disability are anything but dramatic, a contradiction to what most able-bodied people would assume of someone who lost their sight later in life (if you can call twenty-five years old later). I didn’t lose my sight in a traumatic accident. I wasn’t attacked with acid, or hit in the head. I wasn’t rushed to a hospital in brain-splitting agony, wondering whether these were my last moments on earth. My vision simply slowly slipped away leaving me with literally half the picture. I’m grateful for that slow slip into the depths of the water because it meant I wasn’t scared and that I didn’t fall into a fight-or-flight reaction. I accepted quickly that this half-world was my new reality–that is, I could have accepted it if I were the only one involved in that acceptance. However, humans rarely live in isolation, and I am constantly reminded I need to be accepted by other people and their version of my reality. So for seven years I wasn’t disabled, and I wasn’t visually impaired or blind, at least not in public because the public hadn’t decided that I’m any of those things because practitioners of medicine hadn’t told them that I was. But why do they get to be the authority on who I am?
“People don’t just randomly go blind,” says any person who learns I have no answer for my blindness.
Yeah, no shit, Sherlock.
“Maybe you should take a vitamin A supplement”
Do people realize how unhelpful they are when they make these statements? To me, they feel more like accusations than statements of assistance. How could I not know why I had lost part of my vision? Why wasn’t I doing anything to figure it out and fix it? Go ask the fifteen eye doctors I’ve visited who graduated from Ivy League universities and spent eleven years perfecting their insufferable doctor persona. Over the course of seven years, I put up with each doctor’s questions and completed every doctor’s tests, all resulting in the same answer: nothing was wrong. Yet those tests and questions systematically ignored one key component of my diagnosis: my lived reality contradicted each medical conclusion.
At this point, if you’re an observant reader, you may have noticed two things: I haven’t used the word blind in relation to my sight, and I haven’t told you how I lost my sight. The second point is easy to fix, and I’ll explain shortly. The first, however, is more complicated and is the foundation of this essay. Medical and social labeling are so intertwined that they influence a person’s ability to build a relationship between their identity and disability. Consequently, people with disabilities must first navigate both medical and social understandings of disability before they are allowed to label themselves. Yes, to this point, I’ve used a lot of euphemisms to describe some level of sightlessness. No, I’m not being ableist. My dancing around words is not a “differently abled” situation; rather, I am attempting to respect the identifying labels currently in place for a community of people who live on a vastly different spectrum so that I don’t contribute to the plague of “fake” disability.
According to Industries for the Blind and Visually Impaired (IBVI), a US-based organization that works to build a more robust workforce for the blind and visually impaired community, there are four distinct categories of the visual disability spectrum recognized in the United States: partially sighted, low vision, legally blind, and totally blind. Some of these terms are not recognized in a layman’s discussion of the community. According to IBVI, partially sighted is defined as “a person who has partial vision, either in one or both eyes.” Low vision refers to a person with “severe visual impairment in which visual acuity is 20/70 or poorer in the better-seeing eye and cannot improve with glasses or contacts” (IBVI). Legally blind, the most common term, refers to “corrected vision of 20/200 in their best-seeing eye” (IBVI). Total blindness is rare and defined simply as the “complete loss of sight” (IBVI). I would accurately be described as a person with partial vision; however, because this is not a term widely used beyond the well informed visually impaired community, it doesn’t serve many purposes, but for accuracy throughout the remainder of this essay, I will alternate between using the accurate term of “partially sighted” and my personal identifier of “blind” when referencing my sight.
Okay, to the big question: How did I become a partially sighted person? As I said, it wasn’t dramatic, so I can’t remember the exact date or time it happened. I remember I was twenty-four or twenty-five years old at the end of the spring semester of my second year of undergraduate study. I was walking across campus on my way to class when a black shade started to creep in from the right side of my vision. This didn’t concern me because it always happened when a migraine comes on. I stopped to get my water bottle out of my backpack and take some Excedrin, and then I went on my merry way. As I continued to deal with the stress of the end of the semester, it took a few days before I realized that the shade hadn’t retracted like it usually did, but with my focus on exams and final papers, I dismissed it as a prolonged migraine. I wouldn’t seek medical help until June. When the stress of finals was over, and I’d finally received all my grades, my vision hadn’t returned. It was like walking around with an eye patch that only covered the right corners of each eye. That’s how I described it to the Optometrist. He did his tests, and while I needed glasses, which I have worn since I was five years old. My eyes, from his perspective were perfectly healthy, “You can see just fine. None of these tests indicate that what you’re your describing is actually happening”. That was the medical party line for the next seven years, as I periodically went from doctor to doctor until one doctor and ophthalmological neurologist took me seriously. That day, seven years ago, I had a migraine, but it had caused a stroke that had damaged part of the visual cortex of my brain and caused my transient visual migraine aura to become permanent.
Why did it take seven years to receive this diagnosis? Plain and simple, it was math, the bane of every English major’s existence. The statistics were against me. According to the Migraine Research Foundation, an organization founded to address the insufficient funding and lack of clinical focus on migraine diseases, 39 million Americans suffer from migraines; it is the third most prevalent illness globally and the sixth most disabling. Eighty-five percent of those Americans are women who are already disadvantaged within the medical system. In addition, there are only 700 certified headache specialists in the United States, and as of 2017, the National Institutes of Health funded migraine research at an average of 50 cents per migraine sufferer. I was doomed from the start, or I can be conceited and say it took seven years because I’m one in a million since according to Cedars-Sinai, only eight percent of strokes are caused by migraines. Either answer is true.
However, the problem is more socially systemic than these statistics reveal and can be seen in the diagnosis of that first eye doctor and all the others between him and the team that finally diagnosed me. By the doctors’ judgment, I was healthy and I could see; there was nothing wrong with me. However, I knew what I could see before and what I could not see now, and that observation and concern for that change needed attention. The fact my concern was routinely dismissed is the result of medical gaslighting — a term developed within the disabled community through experience, social acuity, and activism. Medical gaslighting refers to the phenomenon within the health-care system of medical professionals’ tendency to downplay and outright ignore symptoms or concerns of their patients. In many cases, doctors will actively attempt to convince their patients that what they are experiencing is all in their heads.
I like to think of medical gaslighting as the application of “you need to see it to believe it” within the field of medicine. In an Irish Times article, “Medical Gaslighting: The Women Not Listened to or Viewed as Overdramatizing or Catastrophizing,” Sabina Brennan interviewed Dr. Martin Rutledge. Dr. Rutledge is a neurologist who specializes in migraines, and he appears to prove that point: “The problem is that you can’t measure migraine, there is nothing that you can objectively say is wrong with the patients because you can’t measure anything” (Brennan 2020). Dr. Rutledge’s attempt to defend the medical community’s mistreatment of migraine disease and the gaslighting that plagues patients during the diagnostic process demonstrates the limits of current medical diagnosis, being that the patient’s participation is systematically unwelcome in the diagnostic process.
An example of this can be seen in the frustration of YouTuber Momming with Migraine (I’ll call her Jennifer for conciseness because she has only publicly divulged her first name for privacy reasons). In her video “Vlog + Tips: The 48-hour FLAT TEST // The Next Step in my CSF Leak Story!” Jen details the next phase in an ongoing documented battle with medical professionals to investigate what she suspects is a cerebral spinal fluid leak. The 48-hour flat test is a diagnostic test designed by Dr. Ian Carroll of Stanford University Medical Center. It is used to determine whether pressure associated with postural changes influence a patient’s headache. The diagnostic instructions provided to patients by the Sandford University Medical Center further reiterate the intent of the test. After describing the reason her doctor ordered the flat test, Jen vents:
I’m honestly a little upset that they are making me do this 48-hour flat test . . . If I was a patient that hadn’t already been spending the last six months or so doing the laying down in bed thing because I figured out on my own that there is a huge postural component . . . but to me, if a patient says if I don’t lay [sic] down for a couple of hours during the day, than [sic] I’m a vegetable at night [but] if I do lay [sic] down, than [sic] I’m chatty at night, than [sic], I mean, I think alarm bells should be going off in these doctors’ heads (Momming with Migraine 1:00–2:14).
The 48-hour flat test is an immeasurable and redundant test in light of Jen’s detailed monitoring of how she manages her symptoms. This situation demonstrates how doctors do not welcome their patients’ participation in their care and how they need to witness symptomatic responses in a controlled setting to believe them.
Another example of medical gaslighting can be found in the story of Olive O’Connor, a mother from Ireland; she is one of the many women featured in Sabina Brennan’s previously mentioned Irish Times article. The article details how O’Connor, a mother of three with a twelve-day-old daughter, repeatedly takes the child to the emergency room after noticing weight loss and an excessive sleeping pattern. All worrying signs for a newborn who should be thriving. During the first visit, the baby is diagnosed as fine, and O’Connor’s concerns are dismissed as an overprotective mother suffering from postpartum depression. On another visit, the child is only admitted if O’Connor agrees to be evaluated. That night, paradoxically, her daughter is dismissed with an innocent heart murmur, and O’Conner is accused of having Munchhausen syndrome, a psychological condition that causes someone to induce or exaggerate illness to get attention. Causing illness or injury to someone else is referred to as Munchhausen by proxy, and parents accused of the condition can have their children removed from their care. For a third time, O’Connor and her husband take the baby to the emergency room. Given the previous heart diagnosis, the child is evaluated by a cardiologist and dismissed again. At her wit’s end, O’Conner goes out for air and her husband takes over, requesting a second cardiologist evaluate his daughter. Finally, the child is diagnosed with a need for emergency heart sugary, medication, and a feeding tube due to her drastic weight loss. Medical gaslighting can be dangerous both physically and mentally for patients who are put through a system that prioritizes testing and diagnostic systems over lived reality. If O’Connor hadn’t persisted in her concern, her child might have died. Furthermore, her persistence came with the risk that all her children might have been removed from her care simply because her insistence and lived reality of motherhood were not consistent with the perspective of the doctors who evaluated her and her child.
Considering life during COVID-19, in which the term “science denier” entered our nomenclature, I want to clarify that in no way is this essay an argument for the denial of medical knowledge and scientific proof. Medical science is needed to diagnose diseases and properly treat patients medicinally. Medical evaluation also facilitates the cataloging of symptoms for conditions which can, over time, help to better treat people who live with an illness. However, patients’ knowledge of their bodies cannot and should not be ignored in favor of medical diagnostics. Medical gaslighting has led to delays in treatment, over-testing, missed/incorrect diagnoses, and, in extreme cases, death or suicide. The consequences of medical gaslighting do not end with the medical community and a patient’s treatment. Instead, it has far-reaching consequences for our social fabric and dictates how members of the nonmedical community judge and give access to the label of disability.
As with any social structure, we have constructed every facet of our society on hierarchical systems. In the case of disability and disability labeling, that hierarchy positions medicine at the top, giving it power over all other aspects of the system. The social model of disability appears to dismantle that system, but the damage has already been done for what is likely to be several more generations. As such, when it comes to access to accessibility for people with disabilities there appears to be gatekeeping — all as a result of the secret password: diagnosis. Doctors don’t consider someone as disabled without a formal diagnosis; support services don’t consider someone as disabled without a formal diagnosis; and even disability support groups (e.g., charity-driven or community-organized support groups on Facebook that are formed by people who suffer from disabilities or chronic illness) prioritize a medical diagnosis over lived reality. It isn’t surprising that the general population stigmatizes the use of disability labeling given society’s long and complicated history around disability and the treatment of people with disabilities. However, that stigmatization is a direct offshoot of the medical communities handling of the diagnosis process for nontraumatic disability and illness. The results can be mentally damaging to how a person’s relationship with their disability and disability as a whole is formed.
For instance, in the video “The Guilt and Shame of Life without a Diagnosis,” deaf and visually impaired YouTuber Jessica Kellgren-Fozard discusses her experience with social gaslighting based on how society viewed her pre- and post-diagnosis, noting that she observed a “massive divide in my life in how I was treated by other people . . . before and after diagnosis” (Jessica Kellgren-Fozard 0:50–1:04). This observation is not an uncommon experience for people with disabilities, especially those with invisible disabilities and those who have navigated a lengthy diagnosis process. Although many patients don’t know precisely what is wrong with them, they know that their bodies are not operating at one hundred percent. As they try to accept their lived reality and own their identity, they receive pushback from a society that understands disability as a diagnosis, not an identity.
An example of this pushback can be seen in the story of Molly Burke. Burk is a YouTuber and disability advocate who speaks about her journey with disability and the genetic condition Retinitis Pigmentosa (RP). She was diagnosed with the incurable condition at the age of four and ultimately lost much of her sight by age fourteen. During a cross-audience interview with Jessica Kellgren-Fozard titled “Deaf & Blind on the Internet with @Molly Burke!” Burk states that although her family and doctors knew that she was struggling as a toddler with her eyesight, the full extent of that struggle was lost on and dismissed by those around her: “I actually started vocalizing, ‘I can’t see,’ and people were like, ‘No, of course, you can see.’ Right? Because able-bodied people who have never interacted with blind people have this idea that it’s all or nothing” (Jessica Kellgren-Fozard 5:30–6:35). Burk’s comments demonstrate the extent to which medical gaslighting influences the social perception of a person’s lived reality. Those around Burk knew something was not right with her eyes, and yet when she expressed the extent of that “something,” she was corrected by them. This correction is built on the basis that doctors have not yet confirmed medically that she could not see and the severity of her disability. As such, those around her were unable to accept her verbalized reality. Much like Burke, I was told repeatedly, “No, of course, you can see,” when the reality was that I couldn’t, or, more accurately, that I couldn’t in the same way that I had before. I heard this statement again and again from family and friends who knew me pre-stroke. However, it was most frustrating when I experienced this socialized medical gaslighting from those I looked to for help, such as the Office of Student Disability at my university. A year after becoming partially sighted, I transferred from junior college to senior college to finish my BA in English. The fall semester had been challenging and stressful, as I shuffled between classes and doctors’ appointments and tried to figure out how to manage in general and as a student with this new way of seeing. The subway was even more discombobulating than usual. I couldn’t see the board as clearly, and my brain became fatigued easily, so processing lectures and managing assignments were proving challenging. Amazingly, I maintained my GPA for that semester, but I knew I would need help when I transferred. What that would look like, I didn’t know, but professors and advisors spoke about the Accessibility Office, as if help would be readily offered. It wasn’t. My first and only visit there was so dehumanizing that I’ve never gone back. I explained to the advisor that I had recently become partially sighted and was seeking out support to make it through the semester. At the time, I didn’t have the knowledge or the language to explain any part of my disability or my accessibility needs. The advisor asked for my doctors’ notes and medical records. When I could not provide those and explained my doctors were still investigating what had happened, the advisor said, “So you’re not blind.” I froze and sputtered before struggling to explain the unexplainable. She continued, “Look, if you don’t have a doctor’s note or medical records, I can’t take you seriously. Besides, you’ve been making eye contact with me this whole time. So why don’t you leave so students with actual problems can get the help they need” (anonymous university disability advisor). This perspective that you’re not disabled unless you have medical proof to your claim, and which affects people with invisible disabilities far more than those with visible disabilities, is the socialized result of medical gaslighting. Society relies on the authority of the medical profession for proof of a disability rather than trusting our observations of a lived reality. As such, people with disabilities are blocked not only from claiming access to accessibility services they need but also from claiming identities as people with disabilities in a social setting. In many cases, such obstacles lead to delays in our acceptance of our disabilities or make us resentful of them.
Disability and disability identity are inherently personal concepts of a person’s reality. We shape our relationship with a disability as we move through the world. Regardless of definitions, I am, and likely will always consider myself to be, nothing more or less than blind. That is my word. That is my reality. And when I can control how people view me, the word blind will be on this list. I am Nina. I like hiking, cuddling with puppies, reading hardcover YA historical fiction, and fantasy novels. I am an English academic working toward my PhD, and I am blind. Blindness is a spectrum, and yes, I have a technical place on that line, and that place influences my medical treatment, but it shouldn’t influence how society labels me. What I claim — what any person with a disability claims as their reality — should be accepted as the starting point in all situations. Because if it’s not, if that reality is questioned in any way, we are set back, shaking our confidence in what we know, what we have accepted, and what in so many cases took others way too long to get on board with.
