• The Ugly Laws: Disability in Public by Susan Schweik
• Changing Faces: The Challenge of Facial Disfigurement by James Partridge
• Staring: How We Look by Rosemarie Garland-Thomson
• Saving Face: Disfigurement and the Politics of Appearance by Heather Laine Talley
• Autobiography of a Face by Lucy Grealy
• Sex and Disability, Robert McRuer and Anna Mollow, eds.

Lots of us see and all of us are seen.

For a while now I’ve wanted to write an essay about books I’ve recently read about the challenges faced by people with bodies that are visibly different. That last bit of course raises the question: different from what?

I use “different” as a catch-all term to distinguish bodies that have some characteristic that’s not normal. Normal is a loaded and strange term I want to be careful with. To the greatest extent I can, I mean to use “normal” descriptively rather than prescriptively in order to examine what it takes to have a body that our society considers unremarkable. I don’t at all mean to endorse existing presumptions about what should be considered normal or abnormal. After all, ultimately almost no one’s body is “normal”:

Goffman (1986) sums up this archetypal “normal” as the “only one complete unblushing male in America: a young, married, white, urban, northern, heterosexual, Protestant father of college education, fully employed, of good complexion, weight and height, and recent record in sports.” The ironic point in this description is that the prototypical figure of normalcy is not what we actually see everywhere but rather what we expect to see . . . Comparisons to what we expect determine our understanding . . . of the disproportionate, the grotesque, deformed, miniature, gigantic, or unusual.

– Staring: How We Look, page 45

Bodies are rendered visibly different through our disgust, our desire, our discomfort, and our disregard. The question of how to ethically engage with everyone we come across in life in all their infinite varieties of bodies is one these books begin to tackle. My essay about those books has been a long time coming. A combination of inertia and my worry that I don’t have anything worthwhile to add has held me back, but now feels like the time when I ought to try to share my thoughts.

Like lots of others, I am in despair about the recent election. It’s a historical moment that’s still incredibly raw. I myself am maybe still not yet much past the point of being flatly stupefied. As I write, we await the swearing in of politicians whose repugnancy is tempered only by the small possibility that they’re perhaps too lax, inattentive, and/or incompetent to implement the frightening platforms they campaigned upon. On election night, seeing the reactions of all the people I love – watching their hearts break in real time on frenetically re-refreshing timelines and newsfeeds – was a singularly terrible moment, capable as it was of making me feel powerless and alone, even as almost everyone I know was, in parallel, simultaneously also feeling powerless and alone. Years of peril lie ahead for now.

But if, as many argue, the personal is political, I want to talk about the powerful ethical agency we wield every day just by looking at others and by how we react to what we see when we look (or don’t). In my search for ways to move forward after a cataclysmically bad election, I believe there are constructive possibilities for social change available to each of us in our daily lives by reflecting on how we see and look at everyone around us.

In describing what’s at stake for people whose bodies are different, labeling the considerations raised by seeing and looking simply as “personal” maybe doesn’t go far enough. Indeed, it wasn’t very long ago at all that you could be arrested for the crime of being perceived as ugly in public:

…municipal enactments of the ugly law ceased by World War I, but the last documented arrest, astonishingly, happened in Omaha, Nebraska, in 1974. An Omaha policeman wanted to arrest a homeless man but had no basis for it. He combed the city code, found the ugly law still on the books, and took the man into custody on the grounds that he had “marks and scars on his body.” Unsurprisingly, the arrest met with confusion and noncooperation by Omaha city prosecutors. “What’s the standard of ugliness?” inquired Judge Walter Cropper, both initiating and responding to a deep conflation of “disease, maiming and deformity” with the word “ugly.” “Who is ugly and who isn’t?” Cropper asked. “Does the law mean that every time my neighbor’s funny-looking kids ask for something I should have them arrested?” Assistant prosecutor Richard Epstein noted that criminal prosecution would require the impossible: courtroom proof that “someone is ugly.”

– The Ugly Laws, page 6.

If being thought ugly no longer subjects one to criminal prosecution, attitudes toward people whose bodies are different due to various disabilities can still today be outrageously malign:

. . . a reader’s letter to Ann Landers, advocating special sections in restaurants “for handicapped people—partially hidden by palms or other greenery so that they are not seen by other guests.” After Landers told off a “Chicago Reader” who complained at the sight of a disabled woman in a restaurant, she printed a raft of hostile letters in response. “Has it occurred to you that  . . .  it is not their divine right to burden the general public with their problems?” wrote F.Z. from Columbus, Ohio. “Would you believe that there are many handicapped people who take great pleasure in flaunting their disability so they can make able-bodied people feel guilty? I, for one, refuse to fall into that trap,” began a letter from California. “The sight of a woman in a wheelchair with food running down her chin would make me throw up. I believe my rights should be respected as much as the rights of the person in the wheelchair . . . maybe even more so, because I am normal and she is not.”

– The Ugly Laws, page 14.

One need not resort to the active hostility of the letter writer from California in order to stigmatize people with different bodies. Many people without ill-will who are merely uneasy around people with disabilities can in their own way underscore the isolation of those who are visibly different:

In The Body Silent, anthropologist Robert Murphy, who conducted fieldwork on his own experience of quadriplegia, points out that looking away from people who make us feel uncomfortable differs from granting them visual anonymity. Looking away is an active denial of acknowledgement rather than the tacit tipping of one’s hat to ordinary fellow citizens expressed in simply not noticing one another. Looking away is for Murphy a deliberate obliteration of his personhood. “[A] wheelchair cannot be hidden,” he notes, “it is brutally visible.” People refuse to look at Murphy, he concludes, partly because they know they are not supposed to stare at him and have no easy way to relate to him. Having been on both sides of stares, Murphy writes of his own “selective blindness” before becoming disabled, contending that a disabled person entering his “field of vision” would not register in his consciousness. After he began using a wheelchair, however, he saw that sociality between nondisabled and disabled people is “tense, awkward, and problematic” and that this is often expressed through ocular evasion. The newly quadriplegic Murphy found that acquaintances “did not look [his] way” and he was “virtually ignored in crowds for long periods, broken by short bursts of patronization.” This “pattern of avoidance” begets feelings of shame and guilt which initially erode Murphy’s dignity and self-esteem. Murphy’s subtle analysis of the social message that looking and looking away sends to stares suggests that recuperating the dignity lost in such exchanges is a demanding task for people with disabilities.

– Staring: How We Look, page 83.

Difficulties with looking and visible differences don’t just arise among strangers. Our treatment of those we love and care about can also be circumscribed by our inability to look past what we see. James Partridge, who suffered serious injuries to his face, recounted his experience with those who visited him as he began his recovery:

Many visitors will find it hard to look at all; they literally don’t know where, or how, to look; they will fuss with the flowers or look out of the window or talk to others in the room.

– Changing Faces, page 36.

And in devastatingly sad findings, research shows that even parents lavish less love on children with different faces and abuse them more often:

. . . Children with craniofacial anomalies are more likely to be ignored by their parents. Facially variant children are less likely to be held, played with, and looked at by their mothers. Worse yet, research indicates that children with facial difference experience more abuse than children with “normal” faces. Disfigurement structures adulthood, too. For example, people with facial difference are significantly less likely to be hired even when compared to those with other physical disabilities.

– Saving Face, page 16.

All that said, the personal experience of Partridge as he traveled the world suggests what one might already reasonably suspect: that the discomfort and stigma associated with various types of bodily difference are cultural – and what’s cultural might possibly be changed if all of us try:

A few years after my accident, still looking very badly disfigured, I traveled to India. There, and in Iran and Afghanistan, my face was rarely given the slightest attention. Heavily scarred faces are regular sights, as disfiguring diseases and accidents are commonplace, while plastic surgery is not widely available in these countries. I could have quite easily lived and worked there with no further surgery. But on my return, a trip on the London Underground was enough to convince me that I needed more reconstruction to live and work in Britain.

– Changing Faces, pages 49-50.

How Do We Look?

Of course, the broader scale of bodily differences takes in almost all of us – not just people who look strikingly different at first glance due to injury or disability. Both my personal experience and what I’ve read confirm that how you look has a profound effect on how you’re treated. Some people are subject to stares. And some folks are left alone – there are those who are disregarded and ignored, while others are accorded the privilege of gliding effortlessly through the public eye.

Feminist disability scholar Garland-Thomson talks about who is granted the “visual anonymity” that anthropologist Robert Murphy keenly felt he lost when he became bound to a wheelchair. In modern life we are surrounded by a constant swirl of unfamiliar people. In contrast to the explicitly averted gazes and flinty evasion described by Murphy above, society extends to some what Garland-Thomson and others call “civil inattention” – the right not to be openly noticed, to not be stared at:

To recognize, in anything but the most superficial manner, individuals amid the flood of mass-produced strangers we encounter would overwhelm us. The solution is simply not to engage with them, to notice them as little as possible unless necessary, and to surround ourselves with shields of privacy . . . Since we cannot recognize each other fully and deeply as we could with our familiars, we both expect and accord each other what the sociologist Erving Goffman calls “civil inattention.” Getting through our day amid this tangle of others depends on such ocular complacency. Staring at one another interrupts this tacit arrangement by exposing us to what might be called incivil attention . . . To be ordinary is to be normal, properly presentable. Indeed, one of the major liberties accorded to the ordinary is civil inattention—that is, the freedom to be inconspicuous, not to be a staree.

– Staring: How We Look, page 35.

Describing civil inattention as the preserve of “ordinary, properly presentable” folks is a way of observing that the political power that accrues to those perceived as normal serves to insulate those who have it from unwelcome attention from the crowds’ eyes. Being given civil inattention is distinct from being invisible or ignored – the former reflects consideration bestowed, the latter reflects consideration withheld. A homeless person on a street corner is not benefiting from civil inattention. A customer in a shop who is left alone to browse is getting it – and not all people in shops enjoy the privilege of being left alone to browse.

From all accounts, one very straightforward way to forfeit civil inattention and to become the subject of stares is to be a woman. No matter where society places women on the spectrum from ugly to beautiful, their bodies are rigorously scrutinized. Lucy Grealy, a woman who had had intrusive surgery on her face from a young age, recalled returning from a summer break to enter junior high school. While she’d always received cruel taunts from her peers, with the onset of puberty she found herself seen through a lens that had now become sexualized. The results were even more demeaning than before:

The summer passed, and junior high school loomed. Jan, Teresa, and Sarah were all very excited at the prospect of being “grownups,” of attending different classes, of having their own locker. Their excitement was contagious, and the night before the first day of school, I proudly marked my assorted notebooks for my different subjects and secretly scuffled by new shoes to make them look old.

Everyone must have been nervous, but I was sure I was the only one who felt true apprehension. I found myself sidling through halls I’d been looking forward to, trying to pretend that I didn’t notice the other kids, almost all of them strangers from adjoining towns, staring at me. Having seen plenty of teen movies with their promise of intrigue and drama, I had been looking forward to going to the lunchroom. As it happened, I sat down next to a table full of boys.

They pointed openly and laughed, calling out loudly enough for me to hear, “What on earth is that?” “That is the ugliest girl I have ever seen.” I knew in my heart that their comments had nothing to do with me, that it was all about them appearing tough and cool to their friends. But these boys were older than the ones in grade school, and for the very first time I realized they were passing judgment on my suitability, or lack of it, as a girlfriend. “I bet David wants to go kiss her, don’t you, David?” “Yeah, right, then I’ll go kiss your mother’s asshole.” “How’ll you know which is which?”

My initial tactic was to pretend I didn’t hear them, but this only seemed to spur them on. In the hallways, where I suffered similar attacks of teasing from random attackers, I simply looked down at the floor and walked more quickly, but in the lunchroom I was a sitting duck. The same group took to seeking me out and purposely sitting near me day after day, even when I tried to camouflage myself by sitting in the middle of a group. They grew bolder, and I could hear them plotting to send someone to sit across the table from me. I’d look up from my food and there would be a boy slouching awkwardly in a red plastic chair, innocently asking me my name. Then he’d ask me how I got to be so ugly. At this the group would burst into laughter, and my inquisitor would saunter back, victorious.

After two weeks I broke down and went to my guidance counselor to complain. I thought he would offer to reprimand them, but instead he asked if I’d like to come and eat in the privacy of his office. Surprised, I said yes, and that’s what I did for the rest of the year whenever I was attending school…

– Autobiography of a Face, pages 124-125.

To try to be charitable, the guidance counselor surely meant to be kind, but his gesture grievously failed to affirm Lucy Grealy’s human dignity, placing as it did the burden of avoiding stares on her. One would have hoped a responsible adult would have instead braved a moral confrontation with those whose stares were a vehicle for intentional cruelty.

Many readers already well know that women’s bodies don’t need to be abnormal to be the subject of unsolicited attention. In a chapter on breasts, Garland-Thomson offers a fascinating anecdote from someone who has lived on both sides of the male gaze to illustrate how that gaze is influenced both by biology and the power dynamics associated with social position:

…One perspective on anxiety about who should and should not stare at breasts comes from a person who was born intersexed. After living for twenty-four years as a woman, this person transitioned to being a man, an identity with which he felt more comfortable. In addition to comportment and costuming adjustments, testosterone treatments accomplished his transition into manhood. Testosterone provided some of the visible marks of manhood such as facial hair, a more manly body, and a lower voice. Hormonally become a male, much to his surprise, affected his staring behavior. He reports that after taking testosterone for several weeks, he began noticing women’s bodies different from before, when he had mostly only looked at people’s bodies to simply note differences. Now that he is hormonally a man, he says when he first sees women in public he finds that he rarely looks at their faces anymore but begins his visual acquaintance with them by staring at their breasts. Having lived as a woman, he finds it mortifying to have developed what he calls “guy’s eyes” and become a “breast man.” Nonetheless, even when his brain tells him not to stare at breasts, he has difficulty not doing so. Despite his initial resistance, he now says that he accepts and even relishes this stereotypical looking practice as part of everyday life as a man. His new social position as a male, in other words, grants him permission to stare at breasts. Here then, the privileges of proper masculinity override the social proscription against staring.

– Staring: How We Look, page 145.

I don’t argue that characterizing behavior as “natural” or as having a biological basis constitutes a valid ethical defense of that behavior, and neither does Garland-Thomson. Nevertheless, while civil inattention might be granted unconsciously by force of habit or consciously as an ethical choice, an impulse to stare at the unusual or remarkable can be irresistible:

Staring is a universal part of our cognitive architecture that natural selection has bequeathed us. The evolutionary origin of staring is a startle response. When staring is intentional—as in the long loving look or the hostile glare—we are masters of our eyes. When an unexpected sight grabs our attention, however, staring is spontaneous and volatile. As the epigraph to the previous section says, “staring, in its pure and simple essence, is the time required by the brain to make sense of the unexpected.” We cannot, even when we try, ignore compelling visual stimuli; we can only withdraw the stare once it is in play.

– Staring: How We Look, page 17.

The issue of how to ethically engage with people whose bodies are visibly different, then, is still unresolved. If one ought not intentionally look away on the one hand, or stare on the other, what’s left?

An Uncomfortable Question

On the occasions when I have the presence of mind to consider it, there’s a question I ask myself when I’m dealing with someone who is testing my patience, boring me, or frustrating me. Someone might be demanding my time in ways I resent or begrudge; they might be seizing hold of my attention when I’d rather be directing it in many other directions than theirs. I won’t bother trying to pose hypothetical circumstances because encounters like that suffuse everyday life – we all live through them all the time.

The question goes something like this: right now would I be much more solicitous of and attentive to this tiresome person in front of me if they were someone I was really physically attracted to?

When I do take pause to ask myself that, the answer is almost always: yes, I would be.

I have to work on that.

Imperfect Identification

Bodies that are different have their admirers – as discussed above, almost no one’s body conforms entirely to Goffman’s archetypal figure of normalcy, and sexual desire is diverse and all-encompassing. Sex is indeed a very tangible way of engaging with different bodies. When people with different bodies are acknowledged as subjects, as opposed to being reduced down to their bodily differences, they write that sex and sexuality can be powerfully affirming.

But what sort of affirmation, if any, can a person with a different body take from sexual advances if she perceives that her suitors’ desire is inextricable from disgust? Alison Kafer, an amputee, reflected upon being fetishized, as well as the darker implications of others’ negative reactions to her being fetishized:

“Dear Alison,

Because of an overall almost total void of amputee women, when one does show herself, it is a major event. For instance (and please don’t take this personally), if I were to see you unexpectedly, walking down the street, chances are good that it would send me into a state just short of shock – the adrenalin would start to flow, the heart rate would quicken, the palms would start to sweat, etc. This really happens! And, I would, in relishing the moment, do everything UNOBTRUSIVELY possible to savor it. In the past, I’ve turned my car around . . . to have another look. I’ve followed someone around in a store/shopping center (at a safe and non-threatening distance) for a few minutes, stealing quick glimpses now and then . . . I just don’t want you or any of your disabled sisters to perceive people like me, who have a genuine interest in you, as well as your “predicament,” shall we say, and who could provide the love and care you deserve, as a bunch of wolves moving in for the kill. Nothing could be further from the truth! To win the love and trust of a disabled lady by meeting her needs and providing for her in every way possible . . . would be the ultimate! Give us a chance, and you’ll reap the benefits IN SPADES!

A friend and admirer,

‘Steve’”

“Steve” and I have never met; our one-sided relationship consists solely of this e-mail and another like it a week earlier. Lengthy descriptions of one man’s sexual self-understanding, both messages offer a personal account of “devoteeism,” a sexual attraction to disabled people, often amputees. For Steve, this desire for amputees “ebbs and floods [sic], . . . but IT IS ALWAYS THERE,” and he carefully explains the nature of this attraction. Noting that devotees “would infinitely rather go out with an amputee of average looks and build than a gorgeous 4-limbed woman,” Steve encourages me to think kindly of devotees because they “can’t get enough of [my] beautiful looks.” For Steve, my “beautiful looks” are the result of my two above-the-knee amputations; the fact that he knows nothing else about my appearance, or my life in general, does nothing to dampen his desire.

It is a desire that others apparently share: although Steve was among the most articulate and thorough defenders of devoteeism to enter my inbox, he was not alone; over the course of a few years, beginning in September 2000, several other devotees wrote to me about their desire for bodies like mine. Reading those e-mails, I did exactly what Steve had politely asked me not to do: I took them personally. Who were these men tracing me through the internet? Was I one of the women they were following surreptitiously? I became increasingly suspicious of strangers, particularly those interested in learning about my disabilities.

My suspicions were shared, and expanded upon, by my friends and family. “There are people called devotees,” I would explain, “who are sexually attracted to amputees.” Their responses were immediate and unequivocal: “Ewww, that’s weird. What’s wrong with those people?” Although I confess to following this train of thought myself, wondering what was “wrong” with devotees, hearing it expressed with such consistency troubled me. What were my friends and family finding reprehensible—the surreptitiousness of devotee behavior or the desire for disabled bodies? The fact that many of them condemned devoteeism immediately, hearing only the existence of the attraction and not its manifestations, led me to worry that what troubled them was the very casting of disabled bodies as inherently attractive. And if so, where did that leave me? Did my friends and family unconsciously find my body so freakish that anyone attracted to it was immediately suspect? Did I share their derisive attitudes? What would it say about my self-image if I dismissed as disgusting and suspicious anyone who desired me? On the other hand, what would it say about my self-image if I were so desperate for sexual recognition that I accepted the kind of behavior mentioned in Steve’s e-mail? Were these two choices my only options? Was devotee desire the only desire available to me?

– Sex and Disability, pages 331-33.

“Steve” here is located in what akin to something like an uncanny valley of identification with Kafer as a subject – close enough to actually being empathetic that he virtually begs forgiveness for his obsession and stresses that he wants to be unobtrusive and non-threatening in his desire – insisting that his heart is true – but it’s those over the top attempts to demonstrate the purity of his desire that end up emphasizing the yawning canyon of understanding which actually separates him from Kafer.

Perhaps in reaction to Steve’s assertion that he “would infinitely rather go out with an amputee of average looks and build than a gorgeous 4-limbed woman,” Kafer writes:

…the rhetoric of devoteeism relies as heavily on disgust for disabled bodies as it does desire. Devotees typically define themselves not simply as people sexually attracted to amputees but as the only people sexually attracted to amputees. “Unlike everyone else,” they claim, “we find you not disgusting but desirable.”

– Sex and Disability, page 335.

One unfortunately common theme among the accounts of people with different bodies is the effort involved in perpetually doing the emotional work necessary to manage others’ discomfort around them. The grace on display is little short of extraordinary, as in this passage where James Partridge gives his take on how to accommodate the sympathy pains of others:

. . . where their anguish makes them freeze up, you must understand their difficulty: they don’t want you to see how sad they are for you, for fear that you will feel even worse. But you can see it in their eyes. They are mourning for you, for what you’ve lost, but they are afraid to cry or say how sorry they are. The temptation in such circumstances is to state the simple ‘I’m OK’ line and hope that this reassurance will be sufficient to let their anguish subside to tolerable, less immediate levels and allow them to act normally toward you. Sometimes this works, occasionally with a passing remark from them like, ‘Oh, you are so brave.’ When they come to terms with you and converse without inhibition, your ‘I’m OK’ statement may need some elaboration. Unfortunately, the anguished tend to take the ‘I’m OK’ reassurance as just a valiant effort on your part to put a brave face on it, and they just don’t believe that you can ever possibly be OK again. If anything, their anguish deepens. What they need is to be able to believe by your actions that you don’t feel bitter or resentful of your lot. If you can genuinely show this, their anguish will be dissipated, because they will realize you don’t want or need sympathy.

– Changing Faces, page 92.

I recall when I was in elementary school my class went on a trip to a nature center. A naturalist there was giving a presentation about the center, and apropos of nothing I raised my hand and asked her what had happened to her. If she was sick and tired of answering that question – and who could blame her if she were – she hid it well, because she told me patiently and matter-of-factly that she had lost her arm in a motorcycle accident.

There are various ploys that can be quite effective at deterring staring if you are unhappy with it. You can make direct but unmalicious eye-to-eye contact, indicating that you are quite capable of looking straight at them and have nothing to hide. Or again, staring can be met by joining conversation – pick a subject on which you think the onlookers will have some strong opinions and be interested in their answers. Before you know it, they will have forgotten their staring and be immersed in telling their stories. You will have to keep up the conversation until you judge it right to help them ask the big question: ‘What happened to you?’

– Changing Faces, page 89.

Her Modest Offering

I hope you found the passages I’ve highlighted here in this essay as thought provoking as I did, and I also hope my comments have served to meaningfully build upon them. All the texts I’ve excerpted are worth reading in their entirety and the insights contained within those books go well beyond what I’ve covered here.

As I wrap up my thoughts on those works, I don’t think I’ve yet done an adequate job of formulating something like a comprehensive vision (no pun intended) of ethically seeing and looking at bodies that are different.

I’ll leave the final word on that subject to Garland-Thomson, as she describes what Harriet McBryde Johnson had to offer to the world:

Many starees we have considered find themselves in the uncomfortable position in a staring encounter of being someone’s idea of what Sontag calls a “repulsive attraction.” As we have seen, they have developed in response a range of strategies for directing staring interactions. The late disability rights lawyer, activist, and storyteller Harriet McBryde Johnson used media and public appearances to coach the public eye to see her distinctiveness according to her own story rather than the one they may have learned about people who look like her.

“It’s not that I’m ugly,” Johnson begins in the February 16, 2003, cover story of the New York Times Magazine, “It’s more that most people don’t understand how to look at me.” With this edgy, yet understated flourish, Johnson begins a story of looking that illustrates how an ethics of staring might work. The photograph of Johnson on the cover shows her seated in her wheelchair, a surprising pose for a cover girl. Boldly beneath her picture sits the unsettling question that Johnson herself poses for many readers: “Should I Have Been Killed at Birth?” The inexplicable combination of this picture, this venue, and this question is startling. With the New York Times as her stage, Johnson gathers up starers and proceeds to show them “how to look.”

The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that’s the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I’m Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin. At 15, I threw away the back brace and let my spine reshape itself into a deep twisty S-curve. Now my right side is two deep canyons. To keep myself upright, I lean forward, rest my rib cage on my lap, plant my elbows beside my knees. Since my backbone found its own natural shape, I’ve been entirely comfortable in my skin.

In this description, Johnson takes charge of the staring encounter that began with her cover photo. She accounts for her unusual body, casually, even chirpily, letting us known what “happened” to her. The seeming contradiction between “four decades of a muscle-wasting disease” and the fact that she is “entirely comfortable in [her own] skin” already disturbs our shared understandings of what it means to inhabit a body. Her compelling what-happened-to-you story makes what most of us would consider harrowing into an ordinary experience:

I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn’t die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don’t know what to make of us . . . Two or three times in my life . . . I have been looked at as a rare kind of beauty . . . some people call me Good Luck Lady.

In this passage, Johnson continues to undermine complacent understandings by advancing yet another set of contradictions. Following the unlikely partnership of “disease” and “comfortable,” comes “decrepitude” and “beauty.” This “beauty,” however, is not ordinary but “rare” in several ways. First, it is a beauty seldom recognized, only “two or three times in [her] life.” Second, it is fragile and infrequent; she is one of the few survivors, not only of “childhood pneumonia” but potentially from the threat of being “killed at birth.” Finally, this “rare beauty,” this not-ugly, is distinct from typical beauty; it has a form and logic of its own, much like the unconventional beauty Doug Auld’s portraits of burn survivors presents.

In showing us how to look at her, Johnson retells our shared story about beauty. This is a novel beauty made of an elegant “twisty S-curve,” of “deep canyons” in unexpected places. Hers is a baroque beauty: irregular, exaggerated, and peculiar. Such “rare beauty” is hard to see, both difficult to look at and to appreciate. Like Sontag’s pictures of pain, it is hard not to read Johnson’s looks as an image of suffering or an occasion for pity or horror. Johnson’s picture is hard to see as well because most of us lack the skills to properly appreciate the way she looks without her guidance. If we learn from her how to look, we may come away knowing how to recognize “rare beauty” when we see it again. If Johnson’s story succeeds, the wide audience of The New York Times may be moved toward a kind of conservation campaign to value and save from extinction the “rare beauty” Johnson has showed them how to appreciate.

The possibilities for misrecognition, of seeing “ugly” where there is “beauty,” are perpetual. When strangers catch sight of her, “most often” she reports, “the reactions are decidedly negative”:

Strangers on the street are moved to comment:

I admire you for being out; most people would give up.

God bless you! I’ll pray for you.

You don’t let the pain hold you back, do you?

If I had to live like you, I think I’d kill myself.

What people usually see, Johnson suggests, is unbearable pain, insurmountable adversity, a diminished life, and a fervent desire for a cured body. Johnson’s starers bring with them these usual kinds of stories when they encounter the unusual sight of someone like her. Similarly to the way she showed her starers how to look at her, she proceeds next to show them how to imagine her life:

I used to try to explain that in fact I enjoy my life, that it’s a great sensual pleasure to zoom by power chair on these delicious muggy streets, that I have no more reason to kill myself than most people. But it gets tedious. . . . they don’t want to know. They think they know everything there is to know, just by looking at me. That’s how stereotypes work. They don’t know they’re confused, that they’re really expressing the discombobulation that comes in my wake.

What makes people who see Johnson “confused” and “discombobulated” is perhaps not so much how she looks but instead how she ended up on the cover of the New York Times Magazine rather than on a telethon, a medical textbook, or begging on the street corner. How could she say, “I enjoy my life”? This is not a life most people would claim to enjoy. Johnson has the kind of body and the kind of life that people have learned is a sentence of suffering. She is the kind of person that genetic or prenatal tests screen out for elimination, whose feeding tube gets removed, or mostly who no one wants to become. And yet, with a closer look at her picture, you see fondly plaited long hair in a lovely, dark rope that winds across her slender shoulder. She wears those chic Chinese Mary Janes on feet that will never touch pavement. She is dressed in a flowing, gypsy outfit that hints at an artistic, sensual soul. She looks pretty hip, in her own way. This shot, upon closer look, feels much like the usual fashionable photos on the cover of magazines. In fact, with help from her story, a scene may begin to emerge of her enjoying “great sensual pleasure” zooning around “delicious muggy streets.” The power wheelchair in which she seems so comfortably settled perhaps enables rather than confines. Maybe she does not have any reason to kill herself, after all.

Johnson’s tutorial on looking is no etiquette lesson about not staring at people with disabilities. Instead, she puts forward an invitation to stare and skillfully crafts its effect, much like other stares we have seen in this book who with great skill show their starers how to look at them. By confronting the readers of the New York Times with what they have learned to see as an unlivable life, she tells the story of a livable life—indeed, an enjoyable life of rare beauty. She moves her audience from what they do not expect to see to perhaps expecting to see people like her again. In other words, she gets them accustomed to looking at her by making herself more familiar than strange, by bringing her life story closer to their own. By getting them to see her as unremarkable in her distinctiveness, she makes it possible to identify with her own aliveness, which as she tells it, seems pretty much like theirs. By both showing and telling her experience as if were ordinary, Johnson reaches toward the work of Scarry’s beauty and Sontag’s good staring. If Johnson’s approach succeeds, the staring encounter she stages will shift her audience from curiosity to knowledge. She will turn them away from arrested stares and set them on a path toward empathetic identification. To use Sontag’s and Scarry’s terms, she will rescue them from the “repulsive attraction” of bad staring and offer them an opportunity to enact social justice.

By staging strategic staring encounters that teach her audience a new way to look at her, she enables them to recognize her full humanity, to stare without stigmatizing. Understanding that people with stareable bodies can have livable lives contributes to a larger ethical goal of accepting and accommodating devalued human differences. Intolerance for human variation, Michael Ignatieff argues, is an unintended consequence of the “liberal experiment,” which fostered sameness as a measure of equality. To counter this intolerance Ignatieff calls for “a polity based on equal rights with the full incorporation of all available human differences.” By putting forward what in political terms might be termed her minority embodiment, Johnson asks for recognition of her “differences,” her rareness, as distinctive beauty rather than damning deviation. By looking at her closely, they can know her life as she knows it, not as they have learned to imagine it. In showing her audiences that she is not really “ugly,” she undertakes the social justice work of “beauty,“ so that they might recognize “the newness of the entire world.” This is her modest offering, then, to making ours a more equitable and inclusive world.

– Staring: How We Look, pages 188-93.

I love this book, but I’d like to start by noting the wrong reasons to want to read it before I talk about the right ones.

It’s tricky to champion David Foster Wallace. He gets a lot of hype – often from unlikable, snobby folks liable to sneer at whatever it is a mere prole like you happens to read. In the popular imagination he’s primarily known for prose that’s lengthy to the point of unmanageability, the indulgent use of obscure vocabulary, and of course copious foot and endnotes.[i] Your average educated adult may not have read much Wallace, but she can nod knowingly in acknowledgment at the mention of David Foster Wallace and footnotes in the same way madeleines and cockroaches stand in for the Proust and Kafka you’ve never read.

I personally get the sense that for some that the driving motivation to summit Mount Infinite Jest is like George Mallory’s rationale for attempting Everest: because it’s there. Enduring 1079 pages as a crucible of intellectual fitness, dodging hazards of hard verbiage all the way up, with a dog-eared OED as your Sherpa. Reading as conquest – a way to visibly display literary virility. It’s not for nothing that someone I met recently feared I might be a “MFA lit bro” when I told her I loved Wallace. There are all kinds of vain, self-absorbed, and dumb reasons to evangelize for Wallace and for Infinite Jest.

JOKE: Q – How do you know if someone’s read Infinite Jest? A – Don’t worry, they’ll tell you.

The irony here is that if all you get from finishing the book is a heightened sense of your own intellectual power, you didn’t really understand it at all. At its core Infinite Jest exalts humility, recognizes everyone’s shared humanity, and expresses profound hope in human connection’s redemptive power to overcome sadness. These are the qualities that make me want to make you want to read it.

I’ve recommended Infinite Jest to more than a few of my friends, and many of them have been kind enough to heed to my recommendation and begin reading it. Most abandon it after the first 75-150 pages. And I hear ya – the first 200 or so pages are jarring and seemingly disjointed, at least until you get beyond 200. The book begins with the chronologically final events of the story, and from there it jumps around from one character’s introductory vignette to another’s introductory vignette, each told in disparate voices (and grammars) without returning to pick up the thread of each character for a long time.

Trust me when I say I can identify with the urge to abandon ship. My own reading history found me purchasing the book as a 20 year old because I heard lots of smart, hip people liked the book. When I picked it back up eight years later and read up to where my bookmark had faithfully served for almost a decade, I did not recall a damn thing of the 60 pages I was (ostensibly) reading for the second time. All of which is to say the beginning of the book did not make much of an impression on me the first time around. But twists and turns in my life brought me back to it in 2013.

Above all else Infinite Jest is about sadness. When asked what he intended to write when he began the book, Wallace said “I wanted to do something sad.” The forms of pain he broached are wide-ranging and almost beyond cataloging. He depicts characters staggering toward coping with loss – losses of family members, lovers, life ambitions, psychic peace, physical well-being, and many other losses, some mundane and some cartoonishly, savagely painful. Insomuch as Infinite Jest has a plot, it centers upon the release of a movie so compelling and pleasurable to watch that the audience loses their minds; viewers are rendered incapable of doing anything other than watching it over and over again until (presumably) they expire.

It sounds outlandish but there’s a basis in reality. While it’s pretty straightforward to draw a parallel between (real life) substance addiction and a (fictional) movie so pleasurable you choose to watch it on repeat until you die, drug and alcohol-induced descent is subtle and insidious, at least compared to the self-annihilation in the pursuit of pleasure first observed in the experiments of Olds and Milner back in 1954. While attempting to research the potentially therapeutic effects of electrical shocks in the brain to alleviate epilepsy, they instead stumbled upon what they called pleasure centers – now more commonly referred to as reward centers.

They found that if hooked up to an electrode which delivers a mild electric shock to a particular region of the brain, and if given access to a lever that activates that shock, rats would choose to push that lever repeatedly, ignoring food and water to the point of starvation and death. Even when presented with the chance to mate, the rats chose to just push the lever instead. Here’s a video with an example of one such rat.

The experimental results could be replicated in higher order mammals, as well. In 1958 a scientist named Lilly wired electrodes in monkeys’ brains. One monkey in his study activated the electrode in its brain 200,000 times in a 20 hour period before succumbing to exhaustion. Back before experimentation of this type was uniformly considered unethical, human subjects displayed a similar willingness to completely lose themselves in the pleasure of senselessly activating an electrode.

In one of the subplots in Infinite Jest the characters allude to the Olds and Milner study. The book’s central problem is grappling with articulating a distinction between pleasure and happiness, as well as attempting to get a grasp on the when the pleasures we choose actually make us happy, versus merely not sad.

One of the most moving passages in the book (which you have to stick it out until page 200 to arrive at) tackles the latter question through a discussion of the lessons one learns while living in a drug and alcohol recovery halfway house, side by side with residents whose addictive substances have been taken away:

If, by virtue of charity or the circumstances of desperation, you ever chance to spend a little time around a Substance-recovery halfway facility like Enfield MA’s state-funded Ennet House, you will acquire many exotic new facts . . .

That a little-mentioned paradox of Substance addiction is: that once you are sufficiently enslaved by a Substance to need to quit the Substance in order to save your life, the enslaving Substance has become so deeply important to you that you will all but lose your mind when it is taken away from you. Or that sometime after your Substance of choice has just been taken away from you in order to save your life, as you hunker down for required A.M. and P.M. prayers, you will find yourself beginning to pray to be allowed literally to lose your mind, to be able to wrap your mind in an old newspaper or something and leave it in an alley to shift for itself, without you.

That in metro Boston the idiom of choice for the male sex-organ is: Unit, which is why Ennet House residents are wryly amused by E.M.P.H. Hospital’s designations of its campus’s buildings.

That certain persons simply will not like you no matter what you do. Then that most nonaddicted adult civilians have already absorbed and accepted this fact, often rather early on.

That no matter how smart you thought you were, you are actually way less smart than that.

That AA and NA and CA’s ‘God’ does not apparently require that you believe in Him/Her/It before He/She/It will help you. That, pace macho bullshit, public male weeping is not only plenty masculine but can actually feel good (reportedly). That sharing means talking, and taking somebody’s inventory means criticizing that person, plus many additional pieces of Recoveryspeak. That an important part of halfway-house Human Immuno-Virus prevention is not leaving your razor or toothbrush in communal bathrooms. That apparently a seasoned prostitute can (reportedly) apply a condom to a customer’s Unit so deftly he doesn’t even know it’s on until he’s history, so to speak.

That a double-layered steel portable strongbox w/ tri-tumblered lock for your razor and toothbrush can be had for under $35.00 U.S./$38.50 O.N.A.N. via Home-Net Hardware, and that Pat M. or the House Manager will let you use the back office’s old TP to order one if you put up a sustained enough squawk.

That over 50% of persons with a Substance addiction suffer from some other recognized form of psychiatric disorder, too. That some male prostitutes become so accustomed to enemas that they cannot have valid bowel movements without them. That a majority of Ennet House residents have at least one tattoo. That the significance of this datum is unanalyzable. That the metro Boston street term for not having any money is: sporting lint. That what elsewhere’s known as Informing or Squealing or Narcing or Ratting or Ratting Out is on the streets of metro Boston known as ‘Eating Cheese,’ presumably spun off from the associative nexus of rat.

That nose-, tongue-, lip-, and eyelid-rings rarely require actual penetrative piercing. This is because of the wide variety of clip-on rings available. That nipple-rings do require piercing, and that clitoris- and glans-rings are not things anyone thinks you really want to know the facts about. That sleeping can be a form of emotional escape and can with sustained effort be abused. That female chicanos are not called chicanas. That it costs $225 U.S. to get a MA driver’s license with your picture but not your name. That purposeful sleep-deprivation can also be an abusable escape. That gambling can be an abusable escape, too, and work, shopping, and shoplifting, and sex, and abstention, and masturbation, and food, and exercise, and meditation/prayer, and sitting so close to Ennet House’s old D.E.C. TP cartridge-viewer that the screen fills your whole vision and the screen’s static charge tickles your nose like a linty mitten.⁷⁰

70. Not to mention, according to some hard-line schools of 12-step thought, yoga, reading, politics, gum-chewing, crossword puzzles, solitaire, romantic intrigue, charity work, political activism, N.R.A. membership, music, art, cleaning, plastic surgery, cartridge-viewing even at normal distances, the loyalty of a fine dog, religious zeal, relentless helpfulness, relentless other-folks’-moral-inventory-taking, the development of hard-line schools of 12-Step thought, ad darn near infinitum, including 12-Step fellowships themselves, such that quiet tales sometimes go around the Boston AA community of certain incredibly advanced and hard-line recovering persons who have pared away potential escape after potential escape until finally, as the stories go, they end up sitting in a bare chair, nude, in an unfurnished room, not moving but also not sleeping or meditating or abstracting, too advanced to stomach the thought of the potential emotional escape of doing anything whatsoever, and just end up sitting there completely motion- and escape-less until a long time later all that’s found in the empty chair is a very fine dusting of off-white ashy stuff that you can wipe away completely with like one damp paper towel.

That you do not have to like a person in order to learn from him/her/it. That loneliness is not a function of solitude. That it is possible to get so angry you really do see everything red. What a ‘Texas Catheter’ is. That some people really do steal — will steal things that are yours. That a lot of U.S. adults truly cannot read, not even a ROM hypertext phonics thing with HELP functions for every word. That cliquey alliance and exclusion and gossip can be forms of escape. That logical validity is not a guarantee of truth. That evil people never believe they are evil, but rather that everyone else is evil. That it is possible to learn valuable things from a stupid person. That it takes effort to pay attention to any one stimulus for more than a few seconds. That you can all of a sudden out of nowhere want to get high with your Substance so bad that you think you will surely die if you don’t, and but can just sit there with your hands writhing in your lap and face wet with craving, can want to get high but instead just sit there, wanting to but not, if that makes sense, and if you can gut it out and not hit the Substance during the craving the craving will eventually pass, it will go away — at least for a while. That it is statistically easier for low-IQ people to kick an addiction than it is for high-IQ people. That the metro Boston street term for panhandling is: stemming, and that it is regarded by some as a craft or art; and that professional stem-artists actually have like little professional colloquia sometimes, little conventions, in parks or public-transport hubs, at night, where they get together and network and exchange feedback on trends and techniques and public relations, etc. That it is possible to abuse OTC cold-and allergy remedies in an addictive manner. That Nyquil is over 50 proof. That boring activities become, perversely, much less boring if you concentrate intently on them. That if enough people in a silent room are drinking coffee it is possible to make out the sound of steam coming off the coffee. That sometimes human beings have to just sit in one place and, like, hurt. That you will become way less concerned with what other people think of you when you realize how seldom they do. That there is such a thing as raw, unalloyed, agendaless kindness. That it is possible to fall asleep during an anxiety attack.

That concentrating intently on anything is very hard work.

That addiction is either a disease or a mental illness or a spiritual condition (as in ‘poor of spirit’) or an O.C.D.-like disorder or an affective or character disorder, and that over 75% of the veteran Boston AAs who want to convince you that it is a disease will make you sit down and watch them write DISEASE on a piece of paper and then divide and hyphenate the word so that it becomes DIS-EASE, then will stare at you as if expecting you to undergo some kind of blinding epiphanic realization, when really (as G. Day points tirelessly out to his counselors) changing DISEASE to DIS-EASE reduces a definition and explanation down to a simple description of a feeling, and rather a whiny insipid one at that.

That most Substance-addicted people are also addicted to thinking, meaning they have a compulsive and unhealthy relationship with their own thinking. That the cute Boston AA term for addictive-type thinking is: Analysis-Paralysis. That cats will in fact get violent diarrhea if you feed them milk, contrary to the popular image of cats and milk. That it is simply more pleasant to be happy than to be pissed off. That 99% of compulsive thinkers’ thinking is about themselves; that 99% of this self-directed thinking consists of imagining and then getting ready for things that are going to happen to them; and then, weirdly, that if they stop to think about it, that 100% of the things they spend 99% of their time and energy imagining and trying to prepare for all the contingencies and consequences of are never good. Then that this connects interestingly with the early-sobriety urge to pray for the literal loss of one’s mind. In short that 99% of the head’s thinking activity consists of trying to scare the everliving shit out of itself. That it is possible to make rather tasty poached eggs in a microwave oven. That the metro-street term for really quite wonderful is: pisser. That everybody’s sneeze sounds different. That some people’s moms never taught them to cover up or turn away when they sneeze. That no one who has been to prison is ever the same again. That you do not have to have sex with a person to get crabs from them. That a clean room feels better to be in than a dirty room. That the people to be most frightened of are the people who are the most frightened. That it takes great personal courage to let yourself appear weak. That you don’t have to hit somebody even if you really really want to. That no single, individual moment is in and of itself unendurable.

Endnote 70 in the above passage alludes to an even more vexing challenge within a challenge – that when it comes down to it, it is radically more difficult to articulate an affirmative vision of what constitutes meaningful living than it is to identify the coping mechanisms one relies upon to deal with the inherent hardships of life. As if it weren’t already hard enough to simply to step back and observe whether our chosen pursuits are indeed “abusable escapes.”

Much of the core of the book centers upon substance abuse and 12-step recovery, but its message isn’t just relevant to those addicted to chemical substances. Many of us in our day to day lives develop dependence upon all kinds of compulsive behaviors and pleasures, fantastical dreams, and flights of ego that might well be less about finding joy than fleeing from what’s dark and sad. And achieving recovery from what makes us sad can’t be accomplished merely by adopting the pose of the ascetic and withdrawing ourselves, however completely, from the pursuit of pleasure:

Something they seem to omit to mention in Boston AA when you’re new and out of your skull with desperation and ready to eliminate your map and they tell you how it’ll all get better and better as you abstain and recover: they somehow omit to mention that the way it gets better and you get better is through pain. Not around pain, or in spite of it. They leave this out, talking instead about Gratitude and Release from Compulsion. There’s serious pain in being sober, though, you find out, after time. Then now that you’re clean and don’t even much want Substances and feeling like you want to both cry and stomp somebody into goo with pain, these Boston AAs start in on telling you you’re right where you’re supposed to be and telling you to remember the pointless pain of active addiction and telling you that at least this sober pain now has a purpose. At least this pain means you’re going somewhere, they say, instead of the repetitive gerbil-wheel of addictive pain.

They neglect to tell you that after the urge to get high magically vanishes and you’ve been Substanceless for maybe six or eight months, you’ll begin to start to ‘Get In Touch’ with why it was that you used Substances in the first place. You’ll start to feel why it was you got dependent on what was, when you get right down to it, an anesthetic. ‘Getting In Touch With Your Feelings’ is another quilted-sampler-type cliché that ends up masking something ghastly deep and real, it turns out. It starts to turn out that the vapider the AA cliché, the sharper the canines of the real truth it covers.

Wallace’s own biography casts a long shadow over any discussion of whether he can offer an affirmative vision of where to proceed from here. I can understand why someone with knowledge of how his life’s story concluded might doubt that he has a great deal of wisdom to contribute to our understanding of how to process and transcend pain. I know some out there will reasonably disagree with me when I say that I tend to think that the course his life took burnishes his credibility on the subject, if anything. Putting that argument aside, though, Infinite Jest’s message is deeply life affirming. It’s a clarion call against that act which he later committed: that no given individual moment, no matter how painful, is something one cannot endure.

Near the book’s end, one character recovering from cocaine addiction talks to another character who is hospitalized with a gunshot wound:

She said ‘This was why I couldn’t get off and stay off. Just as the cliche warns. I literally wasn’t keeping it in the day. I was adding the clean days up in my head.’ She cocked her head at him. ‘Did you ever hear of this fellow Evel Knievel? This motorcycle-jumper?’ . . .

At St. Collie only the Crocodiles’d heard of him. My own Daddy’d followed him, cut out pictures, as a boy.’ Gately can tell she’s smiling under there. ‘But what I used to do, I’d throw away the pipe and shake my fist at the sky and say As God is my fucking witness NEVER AGAIN, as of this minute right here I QUIT FOR ALL TIME.’ She also has this habit of absently patting the top of her head when she talks, where little barrettes and spongy clamps hold the veil in place. ‘And I’d bunker up all whiteknuckled and stay straight. And count the days. I was proud of each day I stayed off. Each day seemed evidence of something, and I counted them. I’d add them up. Line them up end to end. You know?’ Gately knows very well but doesn’t nod, lets her do this on just her own steam. She says ‘And soon it would get. .. improbable. As if each day was a car Knievel had to clear. One car, two cars. By the time I’d get up to say like maybe about 14 cars, it would begin to seem like this staggering number. Jumping over 14 cars. And the rest of the year, looking ahead, hundreds and hundreds of cars, me in the air trying to clear them.’ She left her head alone and cocked it. ‘Who could do it? How did I ever think anyone could do it that way?’

Gately remembered some evil fucking personal detoxes. Broke in Malden. Bent with pleurisy in Salem. MCI/Billerica during a four-day lockdown that caught him short. He remembered Kicking the Bird for weeks on the floor of a Revere Holding cell, courtesy of the good old Revere A.D.A. Locked down tight, a bucket for a toilet, the Holding cell hot but a terrible icy draft down near the floor. Cold Turkey. Abrupt Withdrawal. The Bird. Being incapable of doing it and yet having to do it, locked in. A Revere Holding cage for 92 days. Feeling the edge of every second that went by. Taking it a second at a time. Drawing the time in around him real tight. Withdrawing. Any one second: he remembered: the thought of feeling like he’d be feeling this second for 60 more of these seconds — he couldn’t deal. He could not fucking deal. He had to build a wall around each second just to take it. The whole first two weeks of it are telescoped in his memory down into like one second — less: the space between two heartbeats. A breath and a second, the pause and gather between each cramp. An endless Now stretching its gull-wings out on either side of his heartbeat. And he’d never before or since felt so excruciatingly alive. Living in the Present between pulses. What the White Flaggers talk about: living completely In The Moment. A whole day at a crack seemed like tit, when he Came In. For he had Abided With The Bird.

But this inter-beat Present, this sense of endless Now — it had vanished in Revere Holding along with the heaves and chills. He’d returned to himself, moved to sit on the bunk’s edge, and ceased to Abide because he no longer had to.

His right side is past standing, but the hurt is nothing like the Bird’s hurt was. He wonders, sometimes, if that’s what Ferocious Francis and the rest want him to walk toward: Abiding again between heartbeats; tries to imagine what kind of impossible leap it would take to live that way all the time, by choice, straight: in the second, the Now, walled and contained between slow heartbeats. Ferocious Francis’s own sponsor, the nearly dead guy they wheel to White Flag and call Sarge, says it all the time: It’s a gift, the Now: it’s AA’s real gift: it’s no accident they call it The Present.

‘And yet it wasn’t til that poor new pipe-fellow from home pointed at me and hauled me up there and I said it that I realized,’ Joelle said. ‘I don’t have to do it that way. I get to choose how to do it, and they’ll help me stick to the choice. I don’t think I’d realized before that I could — I can really do this. I can do this for one endless day. I can. Don.’

The look he was giving her was meant to like validate her breakthrough and say yes yes she could, she could as long as she continued to choose to. She was looking right at him, Gately could tell. But he’d also gotten a personal prickly chill all over from his own thinking. He could do the dextral pain the same way: Abiding. No one single instant of it was unendurable. Here was a second right here: he endured it. What was undealable-with was the thought of all the instants all lined up and stretching ahead, glittering. And the projected future fear of the A.D.A., whoever was out there in a hat eating Third World fast food; the fear of getting convicted of Nuckslaughter, of V.I.P.-suffocation; of a lifetime on the edge of his bunk in M.C.I. Walpole, remembering. It’s too much to think about. To Abide there. But none of it’s as of now real. What’s real is the tube and Noxzema and pain. And this could be done just like the Old Cold Bird. He could just hunker down in the space between each heartbeat and make each heartbeat a wall and live in there. Not let his head look over. What’s unendurable is what his own head could make of it all. What his head could report to him, looking over and ahead and reporting. But he could choose not to listen; he could treat his head like G. Day or R. Lenz: clueless noise. He hadn’t quite gotten this before now, how it wasn’t just the matter of riding out the cravings for a Substance: everything unendurable was in the head, was the head not Abiding in the Present but hopping the wall and doing a recon and then returning with unendurable news you then somehow believed. If Gately got out of this, he decided, he was going to take the Knievel picture off his wall and mount it and give it to Joelle, and they’d laugh, and she’d call him Don or The Bimster, etc.

It’s a simple, unadorned message by the time it comes to the reader on page 859. One so earnest it risks being dismissed by a self-perceived sophisticated reader as corny. Sentimental hokum.

It’s also the most powerful spiritual advice on how to survive woe that I’ve come across anywhere, and while it’s simple to grasp, it requires enormous discipline to truly live by. To abide in any circumstance, to live without fear of any future loss, to let go of losses already suffered, and to recognize (internalize, embrace?) the reality that each moment passes and the next will bring change. And if the change in the next moment doesn’t bring relief, the next moment after that may. And so on.

That these might strike one as banal clichés perhaps goes a long way toward explaining why Wallace may have felt it necessary to construct a 1079 page edifice around some basic truths about how to live through pain. He personally knew how hard it could be for one who imagines himself to be more intelligent than those around him to be receptive to seemingly simple messages. In a testimonial on behalf of the real life halfway house in which he (the author) lived, he wrote:

Six months in Granada House helped me immeasurably. I still wince at some of the hyperbole and melodrama that are used in recovery-speak, but the fact of the matter is that my experience at Granada House helped me, starting with the fact that the staff admitted me despite the obnoxious condescension with which I spoke of them, the House, and the 12-Step programs of recovery they tried to enable. They were patient, but they were not pushovers. They enforced a structure and discipline about recovery that I was not capable of on my own: mandatory counseling, mandatory AA or NA meetings, mandatory employment, curfew, chores, etc. Not to mention required reading of AA/NA literature whether I found it literarily distinguished or not. Granada House also provided my first experience of an actual recovering community: there were over twenty newly recovering residents, and the paid staff–almost all of whom were in recovery–and the unpaid volunteers, and the dozens of House alumni who seemed always to be around in the kitchen and living room and offices. I made friends, and enemies, and enemies who then became friends. I was, for six months, literally immersed in recovery. At the time, it seemed crowded and claustrophobic and loud, and I resented the lack of “privacy,” just as I resented the radical simplicity of 12-Step programs’ advice to newcomers: go to a 12-Step meeting every day, make one such meeting your home group, get a sponsor and tell him the truth, get active with some kind of job in your home group, pray for help whether you believe in God or not, etc. The whole thing seemed uncomfortable and undignified and dumb. Now, from the perspective of almost fourteen years sober, it looks like precisely what I needed. In Granada House, I was surrounded by recovering human beings in all their variety and sameness and neurosis and compassion, and I was kept busy, and I was made bluntly and continually aware of the fact that I had a potentially fatal disease that could be arrested only by doing some very simple, strange-looking things. I was denied the chance to sit chain-smoking in private and drive myself crazy with abstract questions about stuff that didn’t matter nearly as much as simply not putting chemicals into my body.

This is not to say that the staff and volunteers at Granada House didn’t listen. The House was structured and disciplined, but it was not authoritarian. One of the kindest and most helpful things the House staff did for me was to sit down and listen–to complaints, cravings, questions, confessions, rants, resentments, terrors, and insights both real and imagined–because a lot of my early recovery consisted of learning to say aloud the stuff about drugs and alcohol and recovery I was thinking, instead of keeping it twisting and writhing around inside my head. People at Granada House listened to me for hours, and did so with neither the clinical disinterest of doctors nor the hand-wringing credulity of relatives. They listened because, in the last analysis, they really understood me: they had been on the fence of both wanting to get sober and not, of loving the very thing that was killing you, of being able to imagine life neither with drugs and alcohol nor without them. They also recognized bullshit, and manipulation, and meaningless intellectualization as a way of evading terrible truths–and on many days the most helpful thing they did was to laugh at me and make fun of my dodges (which were, I realize now, pathetically easy for a fellow addict to spot), and to advise me just not to use chemicals today because tomorrow might very well look different. Advice like this sounds too simplistic to be helpful, but it was crucial: I had gotten through a great many days sober before I realized that one day is all I really had to get through.

After Wallace’s death, Maria Bustillos visited his archives to peruse the books that had comprised his personal library. She was surprised at:

. . . the number of popular self-help books in the collection, and the care and attention with which he read and reread them. I mean stuff of the best-sellingest, Oprah-level cheesiness and la-la reputation was to be found in Wallace’s library. Along with all the Wittgenstein, Husserl and Borges, he read John Bradshaw, Willard Beecher, Neil Fiore, Andrew Weil, M. Scott Peck and Alice Miller. Carefully.

I propose, therefore, there was a method in his OED-bingeing, elaborately literary, aggressively non-linear madness. That the relative difficulty of Infinite Jest may not have merely been self-aggrandizing for the author, or a way to ensure he appealed to pretentious readers, but instead (at least partially) a calculated means to persuade people who fancy themselves very smart to buy in to some moral lessons which, at first glance, might not appear refined enough to catch the attention of the intellectual elite.

Despite its reputation as a snobby book, Infinite Jest takes pains to affirm the humanity of characters who occupy many of the most humble perches in society. It does so in a way that’s compulsively readable, darkly comic, yet in my estimation still sincerely empathetic:

It’s not like Boston AA recoils from the idea of responsibility, though. Cause: no; responsibility: yes. It seems like it all depends on which way the arrow of presumed responsibility points. The hard-faced adopted stripper had presented herself as the object of an outside Cause. Now the arrow comes back around as tonight’s meeting’s last and maybe best Advanced Basics speaker, another newcomer, a round pink girl with no eyelashes at all and a ‘base-head’s ruined teeth, gets up there and speaks in an r-less South Boston brogue about being pregnant at twenty and smoking Eightballs of freebase cocaine like a fiend all through her pregnancy even though she knew it was bad for the baby and wanted desperately to quit. She tells about having her water break and contractions start late one night in her welfare-hotel room when she was right in the middle of an Eightball she’d had to spend the evening turning unbelievably sordid and degrading tricks to pay for; she did what she had to do to get high, she says, even while pregnant, she says; and she says even when the pain of the contractions got to be too bad to bear she’d been unable to tear herself away from the ‘base-pipe to go to the free clinic to deliver, and how she’d sat on the floor of the welfare-hotel room and freebased her way all through labor (that new Joelle girl’s veil’s billowing in and out with her breath, Gately sees, just like it also was during the last speaker’s description of the statue’s orgasm in the catatonic’s dysfunctional Catholic mother’s devotional photo); and how she’d finally delivered of a stillborn infant right there alone on her side like a cow on the rug of her room, all the time throughout still compulsively loading up the glass pipe and smoking; and how the infant emerged all dry and hard like a constipated turdlet, with no protective moisture and no afterbirth-material following it out, and how the emerged infant was tiny and dry and all withered and the color of strong tea, and dead, and also had no face, had in utero developed no eyes or nostrils and just a little lipless hyphen of a mouth, and its limbs were malformed and arachnodactylic, and there had been some sort of translucent reptilian like webbing between its mucronate digits; the speaker’s mouth is a quivering arch of woe; her baby had been poisoned before it could grow a face or make any personal choices, it would have soon died of Substance-Withdrawal in the free clinic’s Pyrex incubator if it had emerged alive anyway, she could tell, she’d been on such a bad ‘base-binge all that pregnant year; and but so eventually the Eightball was consumed and then the screen and steel-wool ball in the pipe itself smoked and the cloth prep-filter smoked to ash and then of course likely-looking pieces of lint had been gleaned off the rug and also smoked, and the girl finally passed out, still umbilically linked to the dead infant; and how when she came to again in unsparing noonlight the next day and saw what still clung by a withered cord to her empty insides she got introduced to the real business-end of the arrow of responsibility, and as she gazed in daylight at the withered faceless stillborn baby she was so overcome with grief and self-loathing that she erected a fortification of complete and black Denial, like total Denial. She held and swaddled the dead thing just as if it were alive instead of dead, and she began to carry it around with her wherever she went, just as she imagined devoted mothers carry their babies with them everywhere they go, the faceless infant’s corpse completely veiled and hidden in a little pink blanket the addicted expectant mother’d let herself buy at Woolworth’s at seven months, and she also kept the cord’s connection in-tact until her end of the cord finally fell out of her and dangled, and smelled, and she carried the dead infant everywhere, even when turning sordid tricks, because single motherhood or not she still needed to get high and still had to do what she had to do to get high, so she carried the blanket-wrapped infant in her arms as she walked the streets in her velvet fuchsia minipants and haltertop and green spike heels, turning tricks, until there began to be strong evidence, as she circled her block — it was August — let’s just say compelling evidence that the infant in the stained cocoon of blanket in her arms was not a biologically viable infant, and passersby on the South Boston streets began to reel away white-faced as the girl passed by, stretch-marked and brown-toothed and lashless (lashes lost in a Substance-accident; fire hazard and dental dysplasia go with the freebase terrain) and also just hauntedly calm-looking, oblivious to the olfactory havoc she was wreaking in the sweltering streets, and but her August’s trick-business soon fell off sharply, understandably, and eventually word that there was a serious infant-and-Denial problem here got around the streets, and her fellow Southie ‘base-heads and street-friends came to her with not ungentle r-less remonstrances and scented hankies and gently prying hands and tried to reason her out of her Denial, but she ignored them all, she guarded her infant from all harm and kept it clutched to her — it was by now sort of stuck to her and would have been hard to separate from her by hand anyway — and she’d walk the streets shunned and trickless and broke and in early-stage Substance-Withdrawal, with the remains of the dead infant’s tummy’s cord dangling out from an unclosable fold in the now ominously ballooned and crusty Woolworth’s blanket: talk about Denial, this girl was in some major-league Denial; and but finally a pale and reeling beat-cop phoned a hysterical olfactory alert in to the Commonwealth’s infamous Department of Social Services — Gately sees alcoholic moms all over the hall cross themselves and shudder at the mere mention of D.S.S., every addicted parent’s worst nightmare, D.S.S., they of the several different abstruse legal definitions of Neglect and the tungsten-tipped battering ram for triple-locked apartment doors; in a dark window Gately sees one reflected mom sitting over with the Brighton AAs that has her two little girls with her in the meeting and now at the D.S.S. reference clutches them reflexively to her bosom, one head per bosom, as one of the girls struggles and dips her knees in the little curtsies of impending potty — but so now D.S.S. was on the case, and a platoon of blandly efficient Wellesley-alum D.S.S. field personnel with clipboards and scary black Chanel women’s businesswear were now on the prowl in the South Boston streets for the addicted speaker and her late faceless infant; and but finally around this time, during last year’s awful late-August heat wave, evidence that the infant had a serious bio-viability problem started presenting itself so forcefully that even the Denial-ridden addict in the mother could not ignore or dismiss it — evidence which the speaker’s reticence about describing (save to say that it involved an insect-attraction problem) makes things all the worse for the empathetic White Flaggers, since it engages the dark imaginations all Substance-abusers share in surplus — and so but the mother says how she finally broke down, emotionally and olfactorily, from the overwhelming evidence, on the cement playground outside her own late mother’s abandoned Project building off the L Street Beach in Southie, and a D.S.S. field team closed in for the pinch, and she and her infant got pinched, and special D.S.S. spray-solvents had to be sent for and utilized in order to detach the Wool worth baby-blanket from her maternal bosom, and the blanket’s contents were more or less reassembled and were interred in a D.S.S. coffin the speaker recalls as being the size of a Mary Kay makeup case, and the speaker was medically informed by somebody with a clipboard from D.S.S. that the infant had been involuntarily toxified to death somewhere along in its development toward becoming a boy; and the mother, after a painful D&C for the impacted placenta she’d carried inside, then spent the next four months on the locked ward of Metropolitan State Hospital in Waltham MA, psychotic with Denial-deferred guilt and cocaine-withdrawal and searing self-hatred; and how when she finally got discharged from Met State with her first S.S.I, mental-disability check she found she had no taste for chunks or powders, she wanted only tall smooth bottles whose labels spoke of Proof, and she drank and drank and believed in her heart she would never stop or swallow the truth, but finally she got to where she had to, she says, swallow it, the responsible truth; how she quickly drank her way to the old two-option welfare-hotel window-ledge and made a blubbering 0200h. phone call, and then so here she is, apologizing for going on so long, trying to tell a truth she hopes someday to swallow, inside. So she can just try and live. When she concludes by asking them to pray for her it almost doesn’t sound corny. Gately tries not to think. Here is no Cause or Excuse. It is simply what happened. This final speaker is truly new, ready: all defenses have been burned away. Smooth-skinned and steadily pinker, at the podium, her eyes squeezed tight, she looks like she’s the one that’s the infant. The host White Flaggers pay this burnt public husk of a newcomer the ultimate Boston AA compliment: they have to consciously try to remember even to blink as they watch her, listening. I.D.ing without effort. There’s no judgment. It’s clear she’s been punished enough. And it was basically the same all over, after all, Out There. And the fact that it was so good to hear her, so good that even Tiny Ewell and Kate Gompert and the rest of the worst of them all sat still and listened without blinking, looking not just at the speaker’s face but into it, helps force Gately to remember all over again what a tragic adventure this is, that none of them signed up for.

This standalone vignette is one long, breathless paragraph, but I don’t think that it can be said that it’s unreadable or that it’s not compelling.

There are aspects of the book that I’m uncomfortable with and/or do not endorse.[ii] But this isn’t a book review. There are lots of characters, themes, and plot strands I’ve not touched upon at all here. I do hope that I’ve perhaps convinced a few folks to give reading Infinite Jest a try – or at the very least maybe you’ll find my love of it a little less insufferable than before.

A unifying thread throughout the novel deals with the destructive power of alienation and the promise of small, real moments of connection between people. Because the story unfolds in a nonlinear fashion, the chronologically final event in the book takes place on page 17. A protagonist is suffering a nervous breakdown, and in the midst of it he perceives acutely that sometimes expertise or prestige are no substitute for common human warmth and genuine empathy:

It will start in the E.R., at the intake desk if C.T.’s late in following the ambulance, or in the green-tiled room after the room with the invasive-digital machines; or, given this special M.D.-supplied ambulance, maybe on the ride itself: some blue-jawed M.D. scrubbed to an antiseptic glow with his name sewn in cursive on his white coat’s breast pocket and a quality desk-set pen, wanting gurneyside Q&A, etiology and diagnosis by Socratic method, ordered and point-by-point. There are, by the O.E.D. VI’s count, nineteen nonarchaic synonyms for unresponsive, of which nine are Latinate and four Saxonic. I will play either Stice or Polep in Sunday’s final. Maybe in front of Venus Williams. It will be someone blue-collar and unlicensed, though, inevitably — a nurse’s aide with quick-bit nails, a hospital security guy, a tired Cuban orderly who addresses me as jou — who will, looking down in the middle of some kind of bustled task, catch what he sees as my eye and ask So yo then man what’s your story?

[i] I refuse to ape this element of his literary style. Don’t believe me? Look! No endnote #2!

[ii] Alright, I lied. Here’s endnote #2. I am uncomfortable with, among other things, the use of (ostensible) African American Vernacular English in Clenette Henderson’s introductory vignette on pages 37-38 (though I lack the linguistic background/competency to condemn it outright), as well as the way Poor Tony’s gender presentation seem to be played up for laughs. Ok – that’s it for the endnotes.