Erin C. Green
I attended the Association of University Centers on Disabilities (AUCD) conference in Washington DC for the first time this November and have been tasked with writing a reflection on my inaugural attendance; I’m finding it nearly impossible to do so without reference to the concentric layers of context within which I experienced this event. On the broadest level, and purely coincidentally, I found myself in our nation’s capital on what came to be the day we re-elected a president who openly mocks the disabled and has overseen myriad attempts to dismantle our supports and protections, who disparages racial, ethnic, and religious minorities, and who threatens the safety of women and LGBTQIA+ communities. In sharp contrast, the middle cylinder of this telescope of temporal intersection was the conference itself, a beacon of the power of coalition and community. And finally, the narrowest focus fell on my own health, as I struggled to absorb this conference’s knowledge and wisdom despite a novel, as yet unknown illness that left me exhausted, nauseated, and struggling to eat.
In searching for a common thread to tie together this week of disparate experiences, I land on the concept of ‘misunderstanding’: the pervasive misperception of the autistic experience, highlighted from multiple angles at AUCD; the egregious misjudgment of my medical situation that I initially encountered at urgent care; and – in the most optimistic and generous-of-spirit light I could attempt to shine on the outcome of our national election – the apparent misapprehension held by half the country regarding the intrinsic value of their fellow humans.
As I ponder, I realize there is a sort of spectrum ranging from relative innocence to direct culpability in these areas of misunderstanding. At what point, for example, does a lack of knowledge about another’s experience become willful ignorance? In the case of our national lapse in judgment, I would argue that heavily marginalized groups bear less culpability, while those privileged with financial means and access to quality education are inexcusably to blame for their conscious, premeditated choices, whether via complacent ignorance or malicious cynicism. I believe that, in all arenas, we owe it to each other to intentionally and perpetually chip away at our own areas of incomplete understanding, to seek out and illuminate our blind spots as a matter of obligation to those with whom we share our terrestrial existence.
This imperative applies equally to biases held regarding those with differing neurological operating systems. Through a range of interactions with fellow autistic self-advocates while in attendance at AUCD, I added to my collection yet more stories of fundamental misunderstanding of who we are and how we exist in the world. The familiar tales of being deeply underestimated cognitively, linguistically, and socially stack up alongside so many individual anecdotes, illustrating sharply how being viewed through the wrong lens begets consequences ranging from painful to punitive: a high school student who put his head down on his desk to better concentrate on captivating lecture content, reprimanded for a misperceived failure to pay attention; a future Harvard grad blocked from accessing mainstream academic content in elementary school via placement in self-contained special education due to communication differences; and the scores upon scores of autistic women, misdiagnosed so routinely with psychiatric disorders rather than autism as to render this misattribution of symptoms a gaslit rite of passage.
Upon returning home from the conference, with my illness still unresolved and clear signs of jaundice emerging, I made my way to urgent care. And, in an abdication of medical duty that I have struggled to make sense of, I was sent home with instructions to follow up with primary care, a prescription for nausea medication, and the differential diagnosis of “psychiatric problems, depression, or abdominal issues.” As an autistic adult, I often struggle to advocate for myself in real time within confusing and maddening situations of this sort, and the degree of challenge is inevitably magnified by the brain fog of acute illness. As I headed home in an Uber, bewildered, concerned for my health, and feeling utterly powerless, I somehow managed to convince the scheduler on the phone that I needed to be seen sooner than the initially-offered nine days later. By the grace of the universe, I snagged an appointment within the hour at the same facility I’d just left – only now with internal medicine rather than urgent care - and turned my Uber around.
The internal medicine doctor immediately recognized my yellowed eyes and sublingual mucosa along with my broader pattern of symptoms as indicative of an acute liver process and urged me on to the emergency department. Initial liver enzyme levels were sky high, and providers recognized the urgency of my situation. I was admitted, underwent further testing, and ultimately was diagnosed with hepatitis A, a best-case outcome with a prognosis of a full recovery of liver function as the virus eventually burns itself out. However, I remain acutely aware that, had my illness not been self-limiting, the initial misinterpretation of my clear symptomatology could have had dire medical consequences. I am left to wonder – was there something about the way I communicated or interacted within that initial visit that lent itself to misunderstanding? I run anxious for sure, but do not have a history of depression or psychiatric challenges. What did this provider see that led him to dismiss yellow eyes and a week-long inability to eat? And, if this truly had been a psychiatric need, would I not have been deserving of compassionate and timely care in that scenario?
My conclusion, after pushing past the reflexive self-doubt, is simple: my experience was rooted in systemic ableism and misogyny, intersecting dangerously to deny me equitable access to needed health care services. Of one thing I am certain; this injustice is not rare, especially among women. Further, my experience feels like a microcosm of the broader autistic existence, and likewise, of the circumstance of being ‘other’ in a society that aspires to the ideals of diversity and inclusion but falls so very far short when choices pitting altruism against self-interest and expediency must be made.
Ultimately, as we continue to fight back against the injustices born of a failure to truly see, understand, and value one another, I believe there is a powerful antidote to be found in genuinely seeing, understanding, and valuing ourselves. I view self-knowledge as a critical foundation of self-advocacy, one worthy of ongoing and committed effort. And, for our allies, facilitating the development of deep self-knowledge has the power to serve as one of the most genuinely transformational therapeutic goals to be undertaken, across disciplines and spanning age groups. We win when we know who we are, to our cores, with such ironclad certainty that we cannot be shaken by those who seek to destabilize, demean, and devalue us. We win when we see ourselves through the right lens, with depth and clarity, illuminated by the light of our inherent and inextricable value.
