If Aristotle wrote inspiration porn

I recently read a series of articles called “The boy behind the mask”, originally published in The Oregonian in 2000, about a boy with a vascular malformation on his face. (From what I can tell, it’s a combined capillary-venous-lymphatic malformation, although the author never actually gives us a name.) The author of the articles, Tom Hallman Jr., won various prizes including a Pulitzer. His book of the same title has five-star reviews from people who were moved and inspired by his account. One disability scholar, Beth Haller, has written a critical response to the articles (“Confusing disability and tragedy”) but even she calls them “poignant and gripping” and has a generally favorable view.

This makes me feel like a bad person for writing negatively about them, but I’m going to do it anyway. I don’t know what Sam Lightner and his family think about Hallman’s take on their lives. What follows is just my personal opinion.

It’s pretty clear that Hallman conceived an outline for the story that went something like “First, evoke pity. Then, evoke terror. Finally, uplift the audience.” He then has to make Sam’s experiences fit this outline however he can. First, we must pity Sam for his deformity. Then we must be terrified by his life-threatening surgery. Then we must feel that the surgery was a triumphant success and that Sam is an inspirational young hero for enduring it. Reality, of course, is far more subtle and complex than this.

Pity

If you believe Hallman, life with a vascular malformation is continuous misery, skulking in shadows even in one’s own home. (“Dim light is a refuge.”) He describes as gruesomely as he can the “huge mass of flesh” like “misshapen hamburger” that “warps” Sam’s face. Rather than help the audience feel comfortable with Sam’s appearance, he exploits it for his literary freak show:

“When strangers looked at Sam, they first fixated on the left side of his face, a swollen mass that looked like a pumpkin left in the fields after Halloween.”

A rotting jack-o-lantern? Really?

There is never any real explanation of what this type of malformation is or how it really looks and feels (I can assure you it is not like hamburger) or what daily life is like (other than isolated and miserable) or how many people are affected. To give scientific explanations or mundane descriptions would demystify it, which is the very opposite of what Hallman is trying to do.

Terror

Then comes the horror film description of Sam’s surgery:

“There is the sound of sizzling, as if grease has been dropped onto a grill. A plume of smoke rises from Sam’s face. But the bleeding continues. […] The side of the boy’s face oozes blood. Drops splatter the floor. A red stain spreads through the surgical drape as if someone had spilled a glass of wine on a white table cloth.”

While I have no doubt that the 13-hour surgery was intense, and ultimately traumatic for Sam, Hallman seems to be squeezing Sam’s face for every last drop of bloody pathos he can get.

Still, I’m glad that I read these articles. Now that I know that this kind of writing is what prize committees like, I am working on the article that will earn me my Pulitzer. Here’s an excerpt from “The girl behind the hemorrhage”:

“She staggers into the dark bathroom and gropes for the switch. Sudden light shows the girl’s face, contorted and pale, in the mirror. Blood spurts from her left nostril, soaking tissue after tissue, while dark droplets appear on the floor like the aftermath of a stabbing.”

Pretty intense stuff, eh? It really takes you inside the experience of a nosebleed.

Inspiration

After Sam’s surgery, peers come up and talk to him in the school line. The implication is that suddenly Sam has a better social life, but it’s clear enough that these peers were old friends who already liked and accepted Sam. Why were we not allowed to see positive aspects of Sam’s social life before the surgery? And are we really supposed to believe that now, everything will be smooth sailing? There is also a strong implication at the end that because of Sam’s surgery he is now confident enough to smile for the yearbook picture, but in the photo comparing his school ID cards, he is smiling in both pictures.

With headings like “The risks we take can tell us who we are,” Hallman suggests that Sam’s identity is found in his willingness to undertake a life-threatening surgery, largely in response to social pressures. Please note, I am not criticizing Sam Lightner’s choice to have surgery (that’s an incredibly complicated and personal choice), but I am criticizing Hallman for making this choice central to who Sam is. Hallman understands that a child risking his life in the hopes of normalizing his appearance is a big deal, but he isn’t ready to modify his own perspective or the perspectives of his readers to change the context in which Sam makes that decision.

He quotes the surgeon, Dr. Mulliken, as saying “Everyone should have the right to look human.” But it is the people around Sam, including the journalist writing his story, who are defining what “human” looks like. Sam’s family recognizes this, as when his father says, “‘It’s a little bit scary to risk everything because the world doesn’t accept his face,'” and, “‘To us, he’s just a kid with a big old head.'”

Hallman acknowledges the perspective of Sam’s family, but ultimately undermines it with his pity-terror-inspiration narrative.

Breaking out of the narrative

Doing some more research on Sam Lightner, I learned that shortly after his surgery, Sam had a stroke and fell into a coma for 2 1/2 months. The stroke was ultimately traced back to effects of the surgery:

“The venous drainage system in the brain would be affected by surgery that altered the blood flow in the malformation. When the plumbing in Sam’s head changed, the blood found a new route.”

(^From Hallman’s book Sam: The Boy Behind the Mask, p. 172. I have not read the whole book, by the way, so I don’t know if it’s more balanced than the articles.)

I also found that Sam now has a public Facebook profile. He appears to have a sense of dark humor about his life, with pictures of himself in T-shirts that say things like “Keeping Portland Weird Since 1985” and “Keep staring. I might do a trick.” He shares thoughts on Swedish health care, public college tuition, and the senate run of the neurosurgeon who saved his life. In one post, Sam says: “I’m 30 years old, I don’t really know how I made it this far in life but I did, so I really just want to smoke my marijuana and enjoy myself.”

Is this continuous with the inspirational arc of Hallman’s narrative? Are people with disabilities allowed to wear caustically funny T-shirts and smoke pot and enjoy themselves, or are they supposed to endure unremitting suffering so that able-bodied folks can alternately pity and be inspired by them?

Reality is, when you are living with any kind of disability, a sense of humor (often dark) goes a long way. Humor is not incompatible with pain or trauma but is one of the ways we cope with it. For this reason, I think that any literary treatment of disability that refuses to laugh with (not at) its disabled subject is going to lack perspective. “The boy behind the mask,” in my opinion, falls pretty heavily into that trap.

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