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Key points
- Unexpected diagnoses can be bewildering, yet also empowering.
- Fiction and film can help us understand experiences of illness, disability, and health.
- When unexpected revelations arrive, we must seize the opportunity to better understand and re-write labels.
Diagnostic Surprises
“Tell me when you can see my finger.”
I am sitting in an ophthalmology exam room facing a kind woman from Nova Scotia who is holding her arm outstretched to one side. She begins to move her finger toward center and I see it immediately. But when she repeats the movement on the other side, I see her finger only when it arrives between our noses.
What I see is roughly half of what we would expect me to see: a semicircle rather than a circle on the visual field charts. Whirring ahead through a series of specialists’ offices and the clanking close white interiors of MRI cylinders, we learn that, thankfully, I do not have a brain tumor or neurological disease. Instead, the “defect” appears to be longstanding, the effect of an old undetected stroke. It probably occurred around the time of my birth, as I had severe respiratory distress syndrome, which could have triggered neurological trauma.
Once the relief settles that I am not facing one of the more frightening possibilities, I am left with this new knowledge about myself—but concerning something that is not itself new. While nothing has changed materially, as I walk through the world I am now aware that I am not seeing half of it. I feel vertiginous, bamboozled, discombobulated, and physically vulnerable, aware of all that I am not seeing, suddenly fearful that something is coming at me from my blind side.
Blade Runner
As I find my footing, new questions arise. If I was unaware of this “defect” all this time, and have adapted, do I even have an impairment or disability? The sudden revelation prompts me to reevaluate these terms—alongside normal, healthy, etc.—none of which seem to fit my experience. It also causes me to question the purpose of these labels. It reminds me of the ending to the Blade Runner Director’s Cut when Rick Deckard (Harrison Ford) gazes at the origami unicorn, realizing that he may be a “replicant” AI. Such an epiphany prompts a reconsideration of the definition of the human, as well as the purposes it serves—such as subjugating those who remain outside the boundary.
In speculative fiction parlance, this is a “tomato in the mirror” plot twist, a variation on what the editors of Asimov’s Science Fiction magazine called a “tomato surprise,” as when a character suddenly learns that he is something other than what he thought himself to be: AI, ghost, alien, zombie, dead, undead, clone, simulation, fictional character, and so forth. Aristotle called it anagnorisis—a coming to knowledge—citing Oedipus as the classic example. While this sort of revelation is deeply unsettling, it also has broader implications; after all, even if it has not happened to you, it may yet. As philosopher Simon Critchley says of Oedipus: “It could be you; you could be not who you think you are.”
ADHD and Autism Spectrum Disorders
As I was adapting to the reflection of myself as the tomato in the mirror, I became curious about how others experience such revelations. What is it like to learn, in adulthood, that you have ADHD—a diagnosis whose scope has expanded dramatically in recent years? What the effects are on our understanding of disability, disease, and health?
Often such knowledge arrives with the force of revelation. For example, entrepreneur and gym teacher Karenne Bloomgarden received an ADHD diagnosis after years of struggle at school and at work, and explained that “I had 38 years of thinking I was a bad person. Now I’m rewriting the tapes of who I thought I was to who I really am.” Memoirist Robert Jergen recounts that visiting a support group after his diagnosis was “like the heavens had opened up and the Holy Choir was singing ... years of pain, anger, depression, anxiety, hatred, and frustration were suddenly explained.” Yet alongside such catharsis comes, in many cases, quite mixed feelings. Photographer/editor Frank Wolkenberg also describes “overwhelming relief” at his ADHD diagnosis, but points out that “there are parts of me that I quite like—indeed, which sometimes have kept me emotionally afloat—like my sense of the absurd, which the [ADHD] medication seems to subdue.”
Another lifelong condition that is often diagnosed in adulthood is Asperger syndrome, which entered the DSM at the turn of the millennium. Indeed, my interest in these kinds of retrospective revelations was first sparked when I was working closely with musician/artist David Byrne during that time and he self-diagnosed. He was relieved to hear that there was an explanation for certain challenges he’d faced—a reaction echoed by many others. As engineer/writer David Finch described his response: “The knowledge felt amazing. It was cathartic. And it made perfect sense. Of course! Here were answers, handed to me so easily, to almost every difficult question I’d had since childhood." Yet he also describes mixed emotions: “One by one, the [Asperger’s survey] questions described everything I already knew about myself—everything that I had always felt made me unique, beautiful, yet removed from other people. Folding my arms tight, I began to cry.”
Such complex reactions prompt us to consider whether Asperger syndrome is a disease, impairment, and/or disability. According to the social model, disability is constituted by the ways society inflicts stigma and lack of access, privileging only narrow range of neurotypical function. Or as writer/advocate Michelle Vines describes: “Any difficulties I have are the result of trying to live in a world where everyone around me is so different from me, not because I myself am faulty. I think Tony Attwood hit the nail on the head when he said"—channeling Sartre—"'People don’t suffer from Asperger’s syndrome. They suffer from other people.’" And when someone has a sudden revelation of a longstanding condition, it often provokes reevaluation of the categories of normalcy and disability, which can be deeply empowering.
Metagnosis
Because it lacks a proper name, I have called this kind of retrospective revelation “metagnosis,” as it so often prompts a change in knowledge (one sense of the prefix meta is change). While these medical epiphanies are increasingly common as a result of diagnostic expansion and new technologies, we do not pay much attention to the phenomenon itself, and people often remain isolated, unable to communicate and process what they have experienced.
As I explore in Metagnosis: Revelatory Narratives of Health and Identity, the term also describes genomic surprises, such as learning that one’s father was not one’s biological parent, as happened to memoirist Dani Shapiro, prompting her to reconsider “what a father really is.” It can also occur with crises that provoke fresh understanding of longstanding societal conditions such as the disease of systemic racism and health care inequities. While many have been painfully aware of these ills, the pandemic is prompting—let us hope, and continue to work towards—greater awareness and action.
These aren’t one-off lessons. The thing about metagnosis is that if it happened once, it could happen again, and the tomato may turn out not to be a tomato after all, or it may transpire that tomato-hood is not fixed but eternally changeable, or is itself a fiction—or you simply cannot know for sure. The unknown unknown is always lurking. This happened to me; after the visual field diagnosis, a further revelation arrived when I learned that I have “blindsight,” or unconscious vision, on my “blind” side—I can detect moving objects without being able to describe them—so I learned that the blindness is not blind in the way I had previously understood. This helped solve the mystery of why it had remained undetected for all those years, and why I function as well as I do.
This sort of twist also happened when Asperger syndrome was dropped from the DSM a mere thirteen years after it arrived. And it is happening to all of us now, for the pandemic has radically shifted the boundaries of medical risk, of sickness and health. Furthermore, as biomedicine and biotechnology and techno-social engineering advance upon the physical body, we are all, to an ever greater extent, finding ourselves confronting and navigating these evolving labels and categories. Increasingly, more aspects of our identities will be plotted on new spectra as yet unimagined.
“Tell me when you can see my finger.” I now accept my vision as my normal. I still do not know what the next surprise might be, and in which categories I may land. But I will tell you that such unexpected revelations are going to keep arriving, whether we can see them coming or not. When they do, we must seize the opportunity to better understand and re-write these labels. In so doing we can construct ourselves and our world with greater equity and justice.
Metagnosis, as a change in knowledge, offers us the opportunity to explore this freedom. We may not have been aware, but it was there all along.
References
Ridley Scott, dir., Blade Runner (Director’s Cut) (Burbank: Warner Bros., 1991).
George H. Scithers, Darrell Schweitzer, and John M. Ford, On Writing Science Fiction: The Editors Strike Back (Philadelphia: Owlswick Press, 1981), 112– 13. See TV Tropes, “Tomato in the Mirror,” https://tvtropes.org/pmwiki/pmwiki.php/Main/TomatoInTheMirror.
Aristotle, The Poetics, trans. S. H. Butcher (London: MacMillan and Co., 1902), loc. 1452a.
Brunch, Tragedy & Us, with Simon Critchley, Paul Holdengräber, and Michael Imperioli, The Public Theater, New York, NY, April 13, 2019. See also Simon Critchley, Tragedy, the Greeks, and Us (New York: Pantheon Books, 2019), 13.
Claudia Wallis and Hannah Bloch, “Life in Overdrive,” Time 144, no. 3 (July 18, 1994).
Robert Jergen, The Little Monster: Growing Up with ADHD (Lanham, MD: Rowman and Littlefield Education, 2005), ix.
Frank Wolkenberg, “Out of a Darkness,” The New York Times, October 11, 1987, 66, 82.
David Finch, The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest To Be a Better Husband (New York: Scribner, 2012), 8, 6.
Michelle Vines, Asperger’s on the Inside (Katy, TX: Grey Gecko Press, 2016), 908–14.
Danielle Spencer, Metagnosis: Revelatory Narratives of Health and Identity. New York: Oxford University Press, 2021.
Dani Shapiro, Inheritance: A Memoir of Genealogy, Paternity, and Love (New York: Alfred A. Knopf, 2019), 138.
Asperger syndrome was introduced in the 2000 DSM-IV-TR and folded into autism spectrum disorders in the 2013 DSM-5. American Psychiatric Association, “Autism Spectrum Disorder” (2013), https://www.psychiatry.org/File%20Library/Psychiatrists/Practice/DSM/APA_DSM-5-Autism-Spectrum-Disorder.pdf While the APA guidelines indicate that the autism spectrum encompasses the previous Asperger syndrome diagnosis, a 2014 study of pervasive developmental disorder (PDD) diagnosis found that only 57.1 percent of those who met DSM-IV-TR criteria fell within DSM-5 criteria for autism spectrum disorder: “High-functioning individuals (i.e., Asperger’s disorder and PDD-NOS) were less likely to meet DSM-5 criteria than those with autistic disorder.” Robyn L. Young and Melissa. L. Rodi, “Redefining Autism Spectrum Disorder Using DSM- 5: The Implications of the Proposed DSM-5 Criteria for Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 44, no. 4 (April 2014). See also M. L. Mattila et al., “Autism Spectrum Disorders According to DSM-IV-TR and Comparison with DSM-5 Draft Criteria: An Epidemiological Study,” Journal of the American Academy of Child & Adolescent Psychiatry 50, no. 6 (June 2011).
