A casebook on disability: Facial disfiguration

The first selection notes that in discussions of those whose civil rights are commonly violated, disabled people or often left out.
Jonathan Allen, on the deep divisions exposed by the fight over Rep. Ilhan Omar, in the form of “the list of groups targeted by hatred”: “Rep. Doug Collins, R-Ga., [noted] that Wiccans, Mormons and disabled people had been left out.” (Emphasis added)

Neil Steinberg, on the human discomfort occasioned by disfigured faces:

Disfigured faces can provoke a fear reaction, leading to bullying and other social tyranny:

Fear of people with facial disfigurements is a common phobia, yet, unlike other fears -- of height, of water, of the dark -- it is seldom discussed, perhaps because so much popular culture, from The Iliad to Saw V, pivots upon this fear. Perhaps it is assumed: of course you are afraid of the man without a face. Who wouldn't be?

Or perhaps because, unlike fear of high places, water or the dark, teratophobia -- fear of disfigured people or of giving birth to a disfigured baby, literally 'fear of monsters' -- has a living object: the injured, burnt, unusual-looking people themselves. Drawing attention to the flinching reaction they often receive, the stares and mockery that are a routine part of their daily lives, can seem an additional cruelty, the sort of vileness enjoyed by schoolyard bullies.

Identifying friend and foe has been a survival skill. A disfigured face, perhaps not seeming human at all, can trigger an instinctive fear:

Why are distorted faces so frightening? Freud classified certain objects as 'unheimlich,' a difficult-to-translate word akin to 'uncanny': strange, weird, unfamiliar. Waxwork dummies, dolls, mannequins can frighten us because we aren't immediately sure what we're looking at, whether it's human or not, and that causes anxiety. A surprisingly large part of the human brain is used to process faces. Identifying friend from foe at a distance was an essential survival skill on the savannah, and a damaged face is thought to somehow rattle this system. ...

The psychologist Irvin Rock demonstrated this in his landmark 1974 paper 'The perception of disoriented figures.' Rock showed that even photos of familiar faces -- famous people like Franklin D Roosevelt, for instance -- will look unsettling when flipped upside down. Just as, if you tip a square enough it stops being a square and starts becoming a diamond, so rotating a face makes it seem less like a face. The mind can't make immediate sense of the inverted features, and reacts with alarm. A bigger change, such as taking away the nose, transforms the face severely enough that it teeters on no longer seeming a human face at all, but something else.

The author himself, who thought he was prepared, experiences “horror”:

That isn't a theoretical example picked out of the air. On another visit to the Craniofacial Center, I enter Seelaus's examination room to be introduced to a patient. He turns in the chair, and is missing the middle part of his face. There are four magnetic posts where his nose will go, and below it, a void revealing smooth yellow plastic. My eyes lock on his eyes, I shake his hand and say some words.

A half-hour later, standing on the elevated train platform, I still feel ... what? 'Harrowed' is the word that eventually comes to mind. Why? There was no surprise. I'm no longer a child but an adult, a newspaper reporter who has spent hours watching autopsies, operations, dissections in gross pathology labs. I was expecting this; it's what I came here for. What about his face was so unsettling?

Maybe seeing injured faces compels an observer to confront the random cruelty of life in a raw form. Maybe it's like peeling back the skin and seeing the skull underneath. Like glimpsing death. Maybe it touches some nameless atavistic horror. ...

Randall H James was born in Ohio in 1956. His first surgeries were done over the next couple of years at Cincinnati Children's Hospital by Dr Jacob Longacre, a pioneer in modern plastic surgery.

The teachers assumed I must be stupid.

Randy James, doctor

Our instincts often betray us into making an “automatic connection between inner person and outer appearance”:  “A disfigured person is a retard”:

"He was like a second father to me because I saw him so much," says James, who didn't celebrate a Christmas at home between the ages of 3 and 13. School holidays were for operations. Summers too.

When little Randy began school, his teachers in the city of Hamilton made a common mistake, the sort of automatic connection between inner person and outer appearance that has been the default assumption since history began.

"The teachers assumed I must be stupid," says James, who was put in a class with children who had learning disabilities -- until teachers realized that he was actually very bright, only shy, and missing an ear, which made it harder for him to hear. He was allowed to sit in the front of the room, where he could hear the teacher, and his grades soared. ...

The disability version of the Heckler's Veto: “You might make the students nervous”:

As a student at the University of Kentucky, James applied to be a residence hall adviser, someone who assists other students in navigating dorm life. The supervisor who rejected him candidly told him that his odd-looking ear could put others off.

"'You might make the students nervous,'" James recalls him saying, then paused, the pain still obvious after 40 years. "These were my classmates."

In the past, disfigured people were often subject to genocide: “A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water”:

We are a society where people thrive or fail -- in part, in large part -- because of appearance. The arrangement of your features goes far in deciding who you are attractive to, what jobs you get. Study after study shows that people associate good looks with good qualities, and impugn those who aren't attractive. Even babies do this, favoring large eyes, full lips, smooth skin. Billions of dollars are spent on plastic surgery by people who are in no way disfigured, just for that little extra boost they feel it gives to them, gilding the lilies of their attractiveness.

How do people with unusual appearances fit into such a world? For most of recorded history, children born with disfigurements were wonders, portents or punishments. If they were allowed to live. "A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water," said Dr David Reisberg, an oral plastic surgeon at the Craniofacial Center.

“Those that we call monsters are not so to God”:

But even then, astute observers saw beyond externalities. Michel de Montaigne in 1595 encountered a child conjoined to the half-torso, arms and legs of an undeveloped twin (what we would now call a parasitic twin), displayed by its father for money. Montaigne noted: "Those that we call monsters are not so to God, who sees in the immensity of His work the infinite forms that He has comprehended therein."

“With malice toward none, with charity for all,” said our kindest president.