by George Stern
From the Editor: George Stern is a twenty-nine-year-old deafblind food writer, linguist, and disability rights advocate currently residing in Lubbock, Texas. He holds a BA in French from Texas Tech University. He has served as president of the Texas Tech Judo and Brazilian Jiu-jitsu club, second vice president of Deafblind Citizens in Action, board member for the CAT-SI (Collaboration and Assistive Technology for Students with Sensory Impairments) program through TTU’s Sowell Center, and is, by his own affirmation and likely many others, seriously one of the better cooks in the country!
George was born in Jamaica, a land of many wonderful things but not of opportunity, especially for people with disabilities. He left Jamaica when he was two years old after an initial misdiagnosis for pinkeye was revised to be bilateral retinal blastoma, a cancer beyond the capacity of George’s home country to treat. The operation to remove the cancer was successfully completed at the Bascom Palmer Eye Institute of Miami, Florida, leaving George blind and alive. George’s bilateral hearing loss, which doctors think stems from a chromosomal abnormality, did not manifest until he started pre-K, which is when he first wore hearing aids.
In this article George challenges the idea that we who are blind must regard ourselves and be regarded by others as broken human beings, a harsh reality based on our functionality. This concept of functionality is also one that he questions. Enjoy the read, and thank you, George:
"It was the best of times; it was the worst of times." The Dickensian obituary of an era—heard in the richly textured voice of Maya Angelou's Mrs. Flowers—seems so apt for our time. I hope the historians and archaeologists responsible for parsing our ruins still have access to him.
It is the best of times because the bald eagle population is on the rebound, dolphins are swimming in the canals of Venice, a plastic-eating enzyme is possibly on its way to mass-production, and, just in general, it's never been clearer that we have many of the solutions to our thorniest problems well in hand if we'd just get out of our own way.
It is the worst of times because institutions, societies, and the planet itself are under incredible stress from the cross-purposing actions of a humankind whose good sense and discernment are being eroded by the sheer volume of information we have available to us.
It is the best of times because old conversations used to churning over the same hypothetical grounds have been shocked out of their complacency by the rude, honest answers of a hitherto inconceivable reality. Thus, as Americans, we now know that neither Black or blue nor all lives matter; it's the economy, stupid. We also know that the presumed superiority of nondisabled minds, bodies, and ways of being and doing, along with the rhetorical cudgel of "functionality" that defends it, are both figments of a fickle context.
One such presumptuous cudgeller is my friend Bruce. Bruce is one of those doing people, forever posting on Facebook about some from-scratch or jury-rigging project or other, or running a comprehension experiment with his guide dog, Fleming. He's also one of those with a sizzling hot take on seemingly everything under the sun, which would be more annoying were he not such a natural storyteller, every sound-off savored in a rich butter of much-examined life experiences and salted with New York bluntness. In another time, a more communally minded place, Bruce would be welcomed as an oracle among oracles, pounding his dominos or mahjong tiles down on a table his life experience and rich voice had earned him a seat at, hearing aids, blindness, and all. But here, where the GDP is G-O-D, his sixty-something years, veteran's status, and encroaching disabilities are a liability, a begrudged public charge on a society that would really prefer he stop fighting the good fight against isolation and accept his irrelevance in the all-important production schema. Life experiences? What percentage of GDP are they again?
Thankfully for us, his friends, Bruce has not acquiesced to this sidelining—at least not completely. But when he wades into the discursive fray around disability rights wielding the cudgel of functionality, I can see that even this Bernie-Sanders-loving, George-Carlin-channeling, born-again-Socialist has swallowed the GDP worshipers' most insidious argument hook, line, and sinker: a person is worth only as much as they can do.
The exchanges tend to go like this: Someone—usually a younger, longer-term disabled person—will put up a post decrying the continued unequal treatment of disabled people by society, with one or several sample incidents appended: the rideshare refusal, a job offer denied on some transparently discriminatory basis, Amtrak trying to charge wheelchair users $25,000 for an in-state, intercity trip. Bruce will show up, sympathetic to the specific plight, but leaning hard into the commonsense and New York straight-talk to assert that, for the disabled, equality is a non sequitur, a wishful pipe dream we'd do well to stop chasing because we're Just Not Equal. It's in the word: "dis" abled, less-than able, not equal to able. Like any good storyteller, he has parables ready to mobilize to his point: A wheelchair user and an able-bodied person apply for the same roofing job. Which one do you expect the contractor to hire? Or: You go to a car lot to buy a car. Your choice is between one with all four wheels and another with one wheel missing. Which do you choose?
The answers here are presumed to be painfully obvious: the roofing company boss and the car buyer will—(must!)—select the least impaired, most functional, most able body; any attempt to frame the two candidates in either scenario as inherently equal (on the basis of humanity or caring) is a patently ridiculous philosophical exercise divorced from reality. Thus, since inequality is just the natural consequence of our impaired functionality, disabled people should defer the impossibility of equality for the more realistic goal of dignity, viz., the right of a person to be valued and respected for their own sake and treated ethically.
The thing to realize about common sense and straight talk is that they proscribe a self-limiting world dependent on unquestioned assumptions, a world in which what goes up must come down. On the other hand, only ceaseless, irreverent questioning of assumptions and an Ender-esque foray into the nonsense of imagination permits us to leave Earth and reach for the stars: what goes up will come down only if it has insufficient velocity to escape Earth’s gravitational pull. Bruce’s parables are bursting at the seams with such unquestioned givens: The human body is reducible to a machine and analogous to a car, though the latter (as yet) lacks the sentient capacity to modify either its functions or situation; the three-wheeled car is summarily dismissed as functionally unequal to the four-wheeled one based on assumed performance in one context, driving, with no inkling that in other contexts, e.g. lighting a nighttime soccer game, facilitating a clandestine sexcapade, or providing a home for woodchucks, the two are effectively equal. The argumentative force of the roofing company hypothetical hinges on our uncritical acceptance of the assumption that being a wheelchair user means you can’t fulfill the functions of a roofer as well as an able-bodied person can, despite the fact that neither the presence nor absence of a wheelchair conveys information that would be truly useful in screening for the position: i.e., can you or an effective agent controlled by you get to the roof? Do you have the experience to know what you or others are doing once up there? Are you afraid of heights? Indeed, the sheer disconnect between this scenario’s assumptions and reality (or even job relevance) illustrates perfectly how common sense and straight talk often veer away from “telling it like it is” into “telling it like I expect it to be.”
The most sweeping assumption of all, though, tacitly underpinning both Bruce’s hypotheticals and much of the pushback against the disability rights equality contention, is this idea of functionality as an immutable, nonnegotiable, objective criterion, always and forever best satisfied by the nondisabled, neuro-and-physio typical human organism. The Breakfast Club Morning Show host, Charlemagne the God, suggests as much in his shutdown of Chelsie Reid, the blind college student who called in to vent about not getting an equal shot at the practical childcare opportunities required for her degree, rebuking her with the “unassailable” logic, “You can’t watch if you can’t see.”
Up until 1990, the State Department refused to even consider hiring blind people, no matter how otherwise qualified, on the basis that, like bus drivers or bank tellers, a foreign officer’s efficacy was supposedly too dependent on visual information to be suitable for the blind. And a deaf person with multiple degrees can file a thousand job applications per day for years to no avail, simply because the person on the other end of the hiring process equates deaf with dumb, different with inferior, and alternative with inefficient or costly.
Yet, a critical look at the historical arc of human endeavor, or robotic design theory, or just everyday life presents a very different reality: functionality is highly mutable, infinitely negotiable, and profoundly context-dependent. Our frail, oxygen-reliant bodies are patently dysfunctional in the crushing depths of the ocean or the vacuum of outer space; but through the cyborg magic of submarines and spacesuits, humans have negotiated functionality for ourselves in even these inimical circumstances. In the intellectual echelons of robotics, preoccupation with the human-shaped, human-presenting machine is yielding to an appreciation of the stranger forms robots can take, and the very different (but often more effective) means they have for being and doing. But the surest proof is in the conceptual pudding the coronavirus has made of everyday life. Its fundamental redefinition of norms has made involuntary, frantic negotiators of those who were hitherto functionality’s default poster children, a transformation that a sizable segment of the population finds discomfiting if the virulence of anti-lockdown protests are any indication.
An NPR report tells of seasoned lawyers flustered by the Supreme Court’s transition of oral arguments to a group phone call format, unsure how to gauge their efficacy absent the nonverbal cues of an in-person situation. Social media is awash in secondhand accounts of people feeling anonymous and conversationally unmoored in our new, perpetual masked ball. The grocery and food delivery apps once derided as first-world frivolities for the lazy, the coddled, and the needy disabled are suddenly in mainstream use, more functional in the pandemic context than all the luxury cars in your driveway. People who never invoked the phrase “mental health” save as a scapegoat for mass shootings have attained an impressive overnight fluency in the language of isolation, mental health, and self-harm, as they question (and protest) everything from the real intent to the necessity to the efficacy of the measures ostensibly implemented to keep them and others safe.
And just like that, with a cough and a sneeze, we’ve entered a reality where the nondisabled population finds itself checking many of the same boxes we disabled people have been doing since forever. Your access to everything and quality-of-life activities constrained by someone else’s assessment of risk? Check. Incredulous that an employer would rather fire and rehire than figure out how to go remote? Check. Frustrated and overwhelmed by the steep learning curve inherent in online learning everything under the sun in our new physical-distancing reality? Check. Shamed for being where supposedly well-intentioned people insist you have no business being, looked at askance for an involuntary bodily reaction, bored and depressed by your isolation from community? Check, check, and infinite checks. Welcome to the fullest, loneliest club on Earth.
Which returns us to the point of difference between Bruce and me. His justification for dignity-over-equality presupposes that equality should be predicated on an immutable, nonnegotiable, objective criterion of functionality, which I hope the preceding arguments have clearly demonstrated doesn’t—cannot—exist. Further, it presupposes mutual exclusivity between dignity—which must work because it demands the possible—and equality, which demonstrably isn’t working because it asserts the impossible. This is actually a lively conversation within the human rights and civil rights communities, which I cannot do justice to here, but let me leave you with a hot take of my own:
Dignity, etymologically linked to the inherently social concept of dignitas, concerns the personal and interpersonal and should be negotiated at that level. Equality, as a legal concept, has to be impersonal (because personal law is by definition partial law). The two aren’t mutually exclusive by default, can indeed even be symbiotic: the impersonal equality mandated by law creating the environment (and setting the expectations) conducive to personal and interpersonal negotiations around dignity, said negotiations in turn developing the relationships essential to sustaining and expanding the impersonal equality and impartiality of the law.
The problem with bringing dignity into the purview of the law is, quite simply, that what law giveth it can take away; the self-same law that confers personhood on a child at conception can reduce a person’s worth to a convenient fraction out of political expediency.
So when and if Corona passes, and the myth of functionality reasserts itself, let us disabled people pursue both dignity and equality, each at its level, and fight the shortness of historical memory to remind our nondisabled fellow citizens where they’re coming from.
Dickens, Charles. “A Tale of Two Cities.” November, 1775.
Morris, Amanda. “Deaf and Unemployed: 1000+ Applications But Still No Full-time Job.” NPR.org. January 12, 2019, 5:01 AM ET. https://www.npr.org/2019/01/12/662925592/deaf-and-unemployed-1-000-applications-but-still-no-full-time-job
Shapiro, Joseph. “2 Wheelchair Users Face A $25,000 Fee To Travel On Amtrak.” All Things Considered, NPR.org. January 17, 2020, 4:13 PM ET. https://www.npr.org/2020/01/17/797410325/amtrak-charged-25-000-to-travel-with-a-wheelchairTotenberg, Nina. “Supreme Court Arguments Resume—But With A Twist.” Morning Edition, NPR.org. May 4, 2020, 5:01 AM ET. https://www.npr.org/2020/05/04/847785015/supreme-court-arguments-resume-but-with-a-twist