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Electric Bodies

We begin in a forest. The camera pushes through a clutch of trees to a clearing that reveals a drop into a ravine. “The owner of this watch has taken a hard fall,” Siri says. We’re listening in, apparently, on an automated 911 call on behalf of Bob B., who crashed while mountain biking and went unconscious. She provides “an estimated search radius of 41 meters” in her familiar clipped dialect — presumably saving the day. Although this is an ad for the Apple Watch, neither customer nor product is seen even once; we’re meant to assume that both are lying somewhere below our field of vision, the latter more active and alert than the former. The implication, underlined by a moody score, is that in a moment of crisis, technology can come to the rescue. 

Through a growing focus on healthcare monitoring in recent years, Apple has positioned its wearables as essential accessories for the technophile and the casual hypochondriac alike. In another video called “Dear Apple,” users read letters addressed directly to Tim Cook, crediting their Apple Watches with saving their lives in various emergencies. Several are cardiac in nature, but others involve adventure-related injuries — falling through river ice, slipping on the job, confronting a bear. In some cases, the Watch’s specific health functions alert the user to medical issues, though the device also comes to the rescue simply by virtue of its function as an unlosable phone — a wrist-bound conduit to 911. By conflating crises looming inside the body with external menaces lying in wait, Apple pitches its Watch as the ultimate asset in a hazardous and uncertain world. 

As a marketing strategy, fear works. When it launched in 2015, the long-hyped Apple Watch seemed like a failure: sales dropped 90 percent in just over two months following release, Fitbit was winning the wearables space, and even celebs were taking their Apple Watches off. (A Fast Companyarticle — headlined “Why the Apple Watch Is Flopping” — winkingly called out early endorsers like Beyoncé and Karl Lagerfeld for appearing to have ditched the accessories in a matter of weeks.) The tide turned when Apple marketers lit on the idea of branding the Watch as a way to ward off mortality, rather than just another symbol of ambient luxury. Though the first model featured a heart-rate tracker and fitness rings gamifying basic activities like standing and walking, Apple slowly increased its focus on health and fitness over subsequent releases, eventually introducing manual period tracking, an electrocardiogram (ECG) feature, glucose logging, and a redesigned Health app that could better integrate with other devices and third-party fitness apps. By late 2017, Apple Watch sales had surpassed those of Fitbit, and today, Apple owns about a third of the wearables market. In the process of securing its market dominance, the company has helped to turn obsessive physical monitoring from a niche hobby of the rich and fit into a commonplace ritual, with tens of millions of customers opting in. 

But acclimating the public to the project of technological management of the body requires more than a few years of shrewd marketing. For decades, the American medical establishment has championed electronic medical devices as acceptable complements to, or even replacements for, more familiar treatment modalities, transforming yesterday’s harbingers of an impersonal cyborg future into today’s gold standard of “care.” And these devices have spawned a global industry with a market cap in the hundreds of billions. In the U.S. alone, millions — including me — live with electronic medical devices like retinal implants, insulin pumps, and pacemakers, relying on them for everything from improved sight to moment-to-moment survival. More than a million pacemakers are embedded worldwide each year, with some 200,000 in the U.S. Over 100,000 implantable cardioverter-defibrillators (ICDs), battery-powered devices that can shock a heart out of irregular rhythms and prevent cardiac arrest, are inserted stateside every year, around half of the estimated global total. And one calculation puts the number of U.S. users of continuous glucose monitors at over two million. 

It’s tempting to see constant self-monitoring as a way to avoid the worst pitfalls of the healthcare system. But as medical technology reaches beyond the very ill and into the realm of the ordinary consumer, companies like Apple and Google exploit both the logic and the deficiencies of professional healthcare in their efforts to bring everybody under their surveillance. Implantable devices embody the drawbacks of financialized healthcare, with medicine outsourced to private industry and placed in the hands of profit-motivated consumer-technology manufacturers. Meanwhile, manufacturers of these supposedly tightly regulated devices are allowed to behave like everyday tech companies — skirting accountability, dropping products without notice, leaving customers stranded — which should complicate our willingness to let existing tech companies move so seamlessly into the business of monitoring and treating our bodies. Rather than liberating us from the problems of the healthcare system, commercial wearables are furthering one of its central trends: the merging of patient and consumer into one compliant subject. 

 

When Barbara Campbell was in her thirties, a genetic disease left her blind. In 2009, she became a “patient” of Second Sight, which manufactured a pioneering retinal implant called the Argus II. The implant was a wonder, helping Campbell regain a limited range of sight. But in 2013, Campbell was transferring between subways in New York City when the device failed without warning. “I was about to go down the stairs and all of a sudden, I heard a little ‘beep, beep, beep’ sound,” Campbell told the tech publication IEEE Spectrum. Second Sight tried to repair her device, but nothing came of its efforts. Not wanting to face the risks of an invasive surgery, Campbell chose to live with the broken implant in her left eye. Campbell lost her sight twice — first by illness, and then by mechanical failure. Since then, her body has been host to a piece of defunct technology.

She’s not alone. In 2019, Second Sight discontinued the Argus II, and the following year the company announced it would wind down operations completely. “No letter, email, or telephone call,” Ross Doerr, another Argus II patient, posted on Facebook. He heard the news from his stepson, who found out from a friend who’d come across the press release online. Doerr, who had been completely blind for decades, received the implant in 2019, only months before the product’s discontinuation. Around the time of Second Sight’s press release, he began experiencing severe vertigo — possibly related to the dizziness the implant sometimes caused — and his doctor recommended that he get an MRI to rule out a brain tumor. Like many electronic medical implants, MRIs can interact dangerously with Argus IIs, so MRI providers are supposed to contact Second Sight before patients undergo the procedure. But there was no one left to contact; the company didn’t answer Doerr’s calls, and it felt too risky to go forward with the scan without their sign-off. In July 2020, Doerr used his Facebook account to beg for “help in locating any doctor affiliated with Second Sight medical products in California.” He told IEEE Spectrum last year, “I still don’t know if I have a brain-stem tumor or not.”

Meanwhile, in July of 2022, Second Sight merged with California-based Nano Precision Medical, Inc. — a developer of subdermal drug-delivery implants which may eventually replace shots, and possibly oral medication as well — and reconstituted itself under the name Vivani Medical. It’s a familiar plot: a med-tech company appears boasting a grand proposal to conquer a new section of the body; a combination of press-generated enthusiasm and opaque science succeeds in attracting venture capital or boosting share prices; and sometimes there’s even enough money to buy smaller med-tech companies like Second Sight. 

Elizabeth Holmes may have been sentenced to eleven years in prison for faking Theranos’s blood test method — and only because she defrauded investors; charges that she defrauded patients didn’t stick — but her style of posturing doesn’t seem to be disappearing anytime soon. In a recent demonstration about his brain-implant company Neuralink, Elon Musk described the implantation procedure as “like replacing a piece of your skull with a smartwatch.” But the event was mostly a recruitment gambit, Musk admitted, and so far Neuralink has only invented a more expensive way to kill macaques. (Still, he insists the product will be ready for human trials this year.) Sometimes, this Barnumesque approach to scientific development yields genuine advancement, but often it seems to siphon attention and resources away from more functional, less sexy approaches to the problem of illness — root-cause investigations, preventive medicine, and social and environmental mitigation. In the case of Second Sight’s merger, a flashy pitch and the subsequent influx of money swallowed an already-approved technology and spat out its customers. For now, Argus II patients remain physically hostage to defunct technology from a company that — legally, at least — no longer exists.

 

Medical-device manufacturers have swept a significant history of failures, injuries, overprescription, and misuse under the rug. They claim that downsides are minimal and problems rare, but recently, FDA recalls of medical devices as a category have soared — by 150 percent between 2003 and 2021, according to reports from Medical Design and Outsourcing and the FDA’s own Center for Devices and Radiological Health. In the past two years, the three leading manufacturers have needed to issue Class I recalls (the most serious kind) for some twenty models of pacemakers and other heart implants, which caused at least 188 injuries. Each of the recalls, which together comprised over 900,000 individual devices, raises the possibility of more harm beyond the reported data. Despite these figures, manufacturers manage to put their thumbs on the scale. A 2020 study found that 96 percent of first-time ICD and cardiac resynchronization therapy-defibrillator patients received devices from doctors who had been paid by at least one manufacturer. Researchers have also concluded that informational materials given to candidates for left ventricular assist devices (LVADs), implants that can extend the lives of people with heart failure, were biased — no big surprise — in favor of implanting; patients were far less likely to agree to implantation when they were asked about the possible quality-of-life tradeoffs it could entail. 

While devices can get patients out of the hospital in the short term, they can also impose an extreme, often lifelong dependence on the broader healthcare system. Cardiac devices require surgical replacement every five to ten years (opening the patient up to potential infections, mistakes, and future diseases) in addition to the far more frequent required checkups. Doctors might argue that for a patient with serious health troubles, intermittent checkups and surgeries are a reasonable price to pay for a prolonged life. Yet the imperative to extend life at all costs can encourage practitioners to bypass half measures in favor of more extreme or invasive ones, while minimizing potential side effects, complications, and quality-of-life concerns. As the Second Sight case shows, when devices fail, there is often nowhere to turn. Commercial manufacturers are for-profit companies, and they can go out of business or discontinue support for a particular device at any moment. 

Even when companies don’t flame out, they are not always held accountable for harm and malfunction. In the 2008 Supreme Court decision Riegel v. Medtronic, Inc., the court voted eight to one in favor of the medical-device company Medtronic after a married couple sued because a balloon catheter burst during the husband’s angioplasty — setting a precedent that makes it difficult to sue manufacturers of medical devices that, like pacemakers, ICDs, and the Argus II, have undergone FDA premarket approval. And, historically, FDA oversight has been both fragmentary and late: the agency didn’t begin regulating medical devices until almost two decades after the first pacemakers were implanted. Increasingly advanced tech products are being implanted in our bodies — as instruments of healing, but also as tools of profit — and our legal and regulatory systems have still not caught up. Manufacturers may call implantees “patients,” but our pedestrian vulnerability to the whims of capital betrays our true status as customers.

 

Implantable medical devices are, we’re told, conduits to unprecedented levels of personal freedom. Marketing materials feature Rockwellian photography of life in motion: customers play tennis, jump rope, attend work and school, mingle with friends, and play with children and grandchildren. A Medtronic pacemaker brochure promises, “Together, helping you lead a fuller life.” Another company’s materials assure us that the ICD is “THE PATH TO YOUR BEST POSSIBLE LIFE.” Almost never is a person pictured in a hospital setting or with any visible sign of the devices themselves, and steps like diagnosis, surgery, and follow-up appointments are conveniently absent. Every medical device arrives in a patient’s body after complicated processes of negotiation among device makers, hospital systems, and insurance companies, but doctors often downplay the variance between different brands. Whether a patient receives a device from company A or company B may seem like a small concern — until complications, like the one I experienced in June 2005, intrude.  

I was about to turn twelve and had been living with my first pacemaker, installed to treat a sluggish heart rate, for a little over two years when my mother received a voicemail with an urgent message: on a home interrogation (the clinical term for a hardware examination), my device had shown an alarming lack of battery. My pacemaker was now in “end-of-life mode,” meaning that if it was not replaced soon, it would shut down permanently. The Guidant pacemaker had been meant to last an additional three years; at the time, my doctors told us that it was failing because it had been poorly installed. They’d had trouble finding space on my scar-knotted heart to fit the connecting electrodes, and, per their theory, my pacemaker was forced to work inordinately hard to deliver treatment, overtaxing its battery. Weeks later, in August 2005, my surgeon replaced my Guidant pacemaker with a Medtronic, just before the machine would have failed. Over the past nineteen years, I’ve undergone six surgeries for device upkeep and implantation, and in 2017 I switched from a pacemaker to my first ICD. Each successive implant brings the possibility of fresh complications, and during routine interrogations of this latest device, a new problem has emerged. One of the standard tests triggers a momentary gap in the algorithm, during which my heart is left on its own. For five to ten seconds, I am brought to the edge of unconsciousness, as my heart reverts to its naturally uneven and low pace — like a flyer in a trapeze routine, waiting to be caught by their partner before plummeting into an abyss. 

Implant users may find themselves in free fall far more often than they’d expect. Clinical guidelines for ICD implantation have liberalized dramatically since the technology’s birth, leading to soaring usage rates. But studies have shown that as many as two-thirds of ICD customers do not receive so-called “appropriate therapy” in the first five years after implantation. To correct an irregular heartbeat (an arrhythmia), the device must deliver a shock at precisely the right moment; in one study, just a third of customers received any shocks at all, with about seven percent of the total sample experiencing both appropriate and inappropriate shocks, and nearly eleven percent of customers receiving shocks exclusively when they shouldn’t have. The authors of a paper in the International Journal of Molecular Sciences argue that “shocks have an arrhythmogenic effect,” meaning that a treatment intended to terminate arrhythmias may end up contributing to more of them. Though many ICD customers’ lives are saved, in other words, others might receive nothing but harm — and some might not need the devices at all. It’s possible that ICDs have become what cardiologists Bernard Lown — one of the inventors of the modern external defibrillator (and winner of the Nobel Peace Prize) — and Paul Axelrod feared when they co-wrote a 1972 op-ed in a journal of the American Heart Association warning against them: “an imperfect solution in search of a plausible and practical application.” Regarded without the rosy filter of marketing, cases where the devices work can begin to seem frighteningly dependent on good luck. The trapeze artists catch their partners cleanly every time — until the day that they don’t.

In March 2005, for instance, Joshua Oukrop, a 21-year-old man living with hypertrophic cardiomyopathy, a thickening of the heart muscle that can cause serious arrhythmias, was on vacation in Utah with his girlfriend. Since 2001, he had lived with a Guidant ICD. While the couple was mountain biking, Oukrop experienced what was likely a cardiac arrest, but due to an undiscovered glitch, his device failed to deliver a life-saving shock, and he died. Soon after his death, Oukrop’s doctors uncovered reports in the FDA’s database indicating that Guidant had known since 2002 that there were problems with its ICDs and continued to sell them anyway. Months before Oukrop’s death, the company had disclosed the issue (including reports of 26 “adverse events”) to the FDA, but no one had communicated the information to doctors, patients, or the general public. “The FDA should have been on top of this,” one of Oukrop’s cardiologists later told CBS News. 

A hundred thousand Guidant defibrillators were recalled in the months after Oukrop’s death, but only because his physicians brought their findings to The New York Times. (A week before the Times published the story, Guidant’s chief medical officer sold $3.3 million in stock.) By the end of 2005, nearly 80 percent of the company’s active devices had either been recalled or were under a safety advisory, and the company had disclosed six additional customer deaths and many more documented device failures. (Lest his death sound like too much of an edge case, Oukrop’s brother — also an ICD customer — was subject to a separate recall of faulty electrodes that, according to manufacturer Medtronic, resulted in at least thirteen customer deaths.)

In 2011, the Justice Department fined Guidant nearly $300 million in criminal penalties, in what was reported to be the largest criminal decision against a medical-device manufacturer in U.S. history. (Not long after the 2005 recalls, the company had been acquired by Boston Scientific, which paid the tab.) Separate civil settlements of nearly $240 million were awarded to more than 8,000 customers in late 2007, before Riegel limited customer recourse. Citing Guidant’s own statements, Judge Donovan Frank wrote that medical devices “generally have a very high rate of reliability,” and, despite Guidant’s criminal obfuscation, device failures themselves were not evidence of criminal conduct. “Advances in medical technology have, unfortunately, inflated the public’s expectations,” Frank argued. According to this muddled logic, devices are mostly safe, but failure should come as no great surprise, since devices could never be entirely safe. Both makers and the press rehearse the line that, across all medical devices, less than one percent fail, but this data is difficult to verify, and accountability for manufacturers remains hard to come by. Citing Riegel in 2011, a U.S. district court judge threw out one of the many class-action patient lawsuits pertaining to the 2005-2006 Guidant recalls. It wasn’t until last year, while researching this essay, that I learned one of the final Guidant recalls included my own device. 

 

The modern pacemaker is flush with bespoke features, allowing a doctor to calibrate a heart’s sensitivity to movement and even monitor it remotely. Today, most companies allow for data from pacemakers and ICDs to be sent directly to apps on doctors’ phones. Patients, meanwhile, are left in the dark, denied access to the medical information generated by their own bodies. Device manufacturers claim that customers in possession of medical information might not know what it means — and the FDA has agreed. In 2012, a spokesperson said, “In the current format, the data collected from implantable cardiac devices should be relayed through the physician to ensure proper interpretation and explanation.” 

These restrictions may sound reasonable to the uninitiated, but, as a variety of patient activists have argued for years, allowing patient-customers to obtain the information on their own devices has the potential to significantly improve health outcomes and quality of life. Medical devices, like consumer electronics, come installed with factory settings, but each patient’s disease is specific and variable. Patients in possession of their own data can more intimately understand the relationship between their daily lives and their devices’ activities than their doctors (who typically spend only minutes with each patient every few months). Researchers have found that some forms of ICD misfires can be reduced by more accurate, customer-specific settings. And having some measure of control can alleviate the psychic burden — the powerlessness and uncertainty — of living with an implanted device. If bodily autonomy is truly a human right, disability and patient activists insist, then it extends to the management of medical devices. Manufacturers remain stubborn. As a Medtronic executive told The Wall Street Journal in 2012, “Our customers are physicians and hospitals.” That is, not patients. 

The intransigence of manufacturers has spurred some customers to get creative. Hugo Campos, for instance, had been living with an ICD for four years when he and his husband lost their employer-provided insurance in 2011. Knowing he would be uninsurable due to his cardiac diagnosis and his device — the preexisting-condition provision of the Affordable Care Act wouldn’t take effect until 2014 — Campos decided to learn how to interrogate his own implant. “I was disillusioned. I thought, ‘Nobody’s looking out for me,’” he told me. “‘I can’t really trust the healthcare system. I have to take matters into my own hands.’” Campos traveled from his home in San Francisco to Greenville, South Carolina to attend a two-week cardiac-rhythm-management program. While there, he accessed his own device for the first time, capturing and reading its data just like a doctor would. He soon purchased a Medtronic programmer on eBay, along with an arsenal of decommissioned cardiac devices that he used to perfect his testing skills, and continued to self-monitor until his device was replaced in 2016. Throughout that period, he maintained intricate spreadsheets mapping interrogations and arrhythmias, trying to determine how certain lifestyle choices — everything from how much sleep he’d gotten to whether he’d consumed coffee — might have precipitated his episodes. He believes that his method has led to improvements in his health, while also allowing him to gain a degree of control over a system that had alienated him from his own body. 

Other homegrown strategies have found wider application. In 2015, the married software designers Dana M. Lewis and Scott Leibrand created a free, open-source artificial pancreas project for the management of diabetes. Their tinkering began several years earlier, when they’d built an app to better customize the volume of the alarms on Lewis’s continuous glucose monitor, which were too quiet. Over time, the couple began adding more features, building in a predictive algorithm that could account for her daily activities and food intake. Their experiment worked: soon Lewis was spending more time “in range,” maintaining desirable glucose levels. By the end of 2014, Lewis and Leibrand had programmed what they now called the DIY Pancreas System (DIYPS) to funnel communication between her continuous glucose monitor and her insulin pump. In the years since the invention of the DIYPS, commercial versions of the same closed-loop system, known as automated insulin delivery, have become available. Still, Lewis and Leibrand have continued to share their work through OpenAPS, giving others the tools to build similar systems. The pair estimates that, as of July 2022, there were more than 2,700 OpenAPS users worldwide, and multiple small studies of self-reported outcomes among users have shown improvements in their health. 

At first glance, commercial fitness tech looks like another way to surmount the barriers that prevent customers from managing their own medical devices. An Apple Watch can serve as the monitoring interface for OpenAPS. AliveCor and Apple Watch’s ECG functions can be used to check for arrhythmias when the data on an implanted cardiac device remains out of reach. Bringing in a personal device can, in fact, be a useful stopgap measure, a way to wrest back some agency from a dysfunctional healthcare system. But to reach their goals of continuous growth, companies like Apple are spreading their wearables far beyond those who really need them. They are normalizing commercial medical tech among the healthy — or those who may have considered themselves healthy at first.

 

Since Apple first began pivoting its Watch toward health and fitness applications, commercial wearable sales have grown skyward. The devices are currently used by a quarter of Americans, and market watchers expect the sector to expand more than threefold — from just over $52 billion in 2021 to $186 billion in 2030 — within a decade. The technology’s impressive sales record stems in part from its success in building habits in its users. Apple Watch functions become deeply integrated into wearers’ daily routines. Among the most ardent of these users are so-called “biohackers,” who monitor the ebbs and flows of their own bodies in attempts to optimize themselves like computers and delay death. For everyone else, these devices are pitched as something between frivolous wellness accessories and essential components of “preventive medicine.” (The two might even go hand in hand: your neuroticism could help you exercise your way clear of risk factors for disease.) Strategically, Apple seems to be trying to have it both ways, positioning itself as an alternative to the healthcare system even as it increasingly infiltrates it. This is, of course, a good way to maximize profit. 

Many of Apple Watch’s loftiest promises depend on its ECG capability, a simplified version of a standard heart rhythm test that can find arrhythmias and other warning signs of sudden cardiac death. The Watch can periodically check the user’s pulse for signs of irregular heart rate; when notified, the user can then initiate the Watch’s ECG function to test for atrial fibrillation. The irregular rhythm monitoring is technically optional, but the software (and the advertising) encourages users to keep it enabled.

But if you’re healthy and young, should you? There are currently more than 100 million Apple Watch customers worldwide, and people aged 18 to 34 are, for now, buying more than any other age group. (Atrial fibrillation is most common in people over 65.) A 2018 statement by the U.S. Preventive Services Task Force concluded there was insufficient evidence for the benefits of preventive ECG screening. Moreover, such screenings could be “associated with small to moderate harms, such as misdiagnosis, additional testing and invasive procedures, and overtreatment.” On its website, Apple touts FDA clearance for its ECG feature, but clearance is a process distinct from approval, which requires clinical trials and safety testing. Clearance, by contrast, can be granted to devices if they’re sufficiently similar to other, previously cleared products. Another rule allows manufacturers to alter components of existing devices without going through the hurdles of full approval; Medtronic was able to bring its faulty ICD electrode, the one that Joshua Oukrop’s brother had, to market without being required to complete new clinical trials. But all the nuances of the FDA’s endorsement gradations are easily elided in shrewd marketing, and companies can take advantage of the system’s opacity. What Apple usually fails to note when trumpeting its clearance is that the FDA also warned that the company’s ECG test “is not intended to replace traditional methods of diagnosis or treatment.” When the ECG function does identify an irregular rhythm, the Watch’s messaging encourages customers to seek further medical testing, potentially shuttling them towards the clinical cardiac realm and the prospect of future implantation. Some might see this as a positive, but there are profound risks attached to funneling ever more customers into a system so full of error. 

Like any other medical device company, Apple pitches directly to physicians: “The future of healthcare is in your hands,” reads a banner on its public-facing healthcare website, above a photo of a doctor holding an iPad. The company is already promoting ways for doctors to use their products to improve performance inside hospitals, such as digitizing medical records via iPads and iPhones, and to extend their reach beyond it — say, by facilitating home surveillance for “at-risk” patients with Apple Watches. Apple is not offering an alternative to traditional med-tech manufacturers; its third-party developer platform is actively helping some of them with research and product development for things like portable ultrasounds and blood-loss measurement tools. And, of course, it is positioning iPads, iPhones, and Apple Watches as the natural interfaces for these new capabilities. This kind of expansion casts doubt on the utopian vision of a post-hospital future conjured up by so much of the industry’s marketing. 

Apple is not the only tech behemoth getting into the health space. Amazon has its own fitness tracker, Halo, and recently acquired the private primary-care startup One Medical. Google bought Fitbit in 2021 (which had 29 million active users the year prior) as just one part of a multi-billion dollar investment into healthcare — including a slew of new research-and-development initiatives with hospital systems all over the country. Google also runs a health biotech company called Calico, which leads initiatives in anti-aging and extending human lifespans.

And other companies have emerged to capitalize on the demand for wearables. Whoop, valued at $3.6 billion, tracks a staggering number of signals from skin temperature and respiratory rate to heart-rate variability and sleep cycles, supposedly to improve the user’s fitness recovery and minimize strain. Levels, valued at $300 million, markets recreational glucose monitoring so that even non-diabetics can “unlock your metabolic health.” A smartwatch from the French company Withings supposedly checks oxygen saturation and detects sleep apnea; other Withings products, such as blood pressure cuffs, “smart scales,” and “sleep mats,” send their data to the watch.

With all this constant monitoring, it’s worth asking where the data goes and whom it serves. Flo, a popular period tracking company, was accused by the FTC in 2021 of sharing users’ personal health data with third-party analytics companies, making it available for targeted advertising. That the Apple Watch can now also track menstrual cycles via temperature sensing is a concerning fact in post-Roe America, given Apple’s track record of compliance with law enforcement and the push in anti-abortion states to prosecute abortions, miscarriages, and stillbirths by any means necessary. By its own disclosures, Apple complied with 90 percent of the law-enforcement requests for data that the company received in the first half of 2021, and, despite technically being medical information, the continuous streams of data collected by wearables aren’t protected by HIPAA.

All this data presents an opportunity for insurance companies. Many have devised partnership programs in which they give away cheap or free wearables to customers who agree to keep them on and exercise with a prescribed frequency. UnitedHealthcare has boasted that employers who opt in to its Apple Watch program may pay less in health-insurance costs, ostensibly because of improved health. But it’s not so hard to envision how wearables companies might capitalize on the willingness of customers to provide regular data on their health and fitness. “They’ve got a wealth of personal health data through Apple Watch,” Ben Wood, an analyst at the tech analytics firm CCS, told Forbes. “If they join some of the dots together [Apple] can become a very competitive health insurance player.” These sort of predictions, like the data wrung from a body, are endless and unreliable. But a good rule of thumb: when evangelists start envisioning the same future that skeptics fret over, take note.

For all the marketing bluster about improving healthcare access and outcomes, it’s difficult to see the expanding wearables market as anything other than an attempt to further privatize an already privatized system — turning customers into the host bodies through which capital flows and mutates. In an opaque, expensive, and often inadequate medical system, commercial health tech is able to market itself as an alternative — all while acclimating the public to round-the-clock body surveillance. Sickness and health may be quantifiable up to a point, and medical implants may be helpful for some, but constant self-monitoring can invite harm as much as prevent it. Arming ourselves with medical devices, we can lose sight of our bodies’ intuitive ability to self-monitor, to tell us when and if something is wrong; we can forget that doses of leisure and even risky pleasures can also add up to a good and healthy existence. When the mechanisms of care have lived behind a paywall for so long, surrendering to the consumer health-tech complex provides the illusion of control. Yet in trying to evade our own mortality, we instead devise solutions that remind us constantly of its boundaries. Nothing could be more human.

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Posed Riddles

 

“I am not ghoulish, am I?” Diane Arbus wrote to a lover in 1960, describing how she couldn’t help but stop and watch as a woman lay crying in the street. “Is everyone ghoulish? It wouldn’t have been better to turn away, would it?”

For half a century, Arbus’s work has kept us asking these same questions. Her unlikely subjects have become almost proverbial: the twin girls, dressed in identical black dresses, looking creepily into the camera (purportedly the inspiration for the twins in The Shining); the Jewish giant looming over his little parents; the “female impersonators,” as Arbus sometimes called men in drag; the couples — straight, queer, interracial, old, ridiculously young; the mentally disabled women holding hands; and, perhaps most famous of all, the wigged-out kid clasping a toy hand grenade in Central Park. Arbus was attracted to people who were visibly different — to those she called “freaks.” You feel a “quality of legend” about them, she once said, “like a person in a fairy tale who stops you and demands that you answer a riddle. Most people go through life dreading they’ll have a traumatic experience. Freaks were born with their trauma. They’ve already passed their test in life. They’re aristocrats.” Outside narrow academic channels, those words have framed her reception ever since: Arbus is the one who took pictures of weirdos and grotesques, always cruising for difference. In turn, she, too, has acquired a “quality of legend.”

The origin of the Arbus myth can be traced with unusual precision to a landmark 1972 show at the Museum of Modern Art, which traveled to galleries across the world and finally elevated Arbus from working photographer, scrambling for commissions from magazines and newspapers, to capital-A artist and cultural icon. The show remains one of the most visited exhibitions in MoMA history, though Arbus herself never saw it: she died by suicide the year before it opened. Last year, to mark the 50th anniversary of Arbus’s posthumous breakthrough, David Zwirner rehung the 115 photographs from that original MoMA show in a new one called Cataclysm: The 1972 Diane Arbus Retrospective Revisited. (The Drift receives funding from David Zwirner.) Cataclysm greeted visitors not with photographs, but with words — unattributed observations and judgments and praise scattered on the walls without the usual didactic logic of wall text. The symbolism was apt: to get to Arbus, you have to wade through a storm of opinions that has long warped our view of her work and rendered the critical debate less interesting than it should be. 

Every Arbus show or publication has presented an opportunity to consider anew the Problem of Diane Arbus: what should we make of the freaks? Are the photographs cruel or compassionate? Demeaning or dignifying? Many critics have sought the answer in Arbus herself. One camp, represented most notoriously by Susan Sontag, has regarded Arbus as a daughter of privilege who sought out ugliness so that she could throw it in the face of the bougie gallery-going audience. The opposite camp has insisted that what seems like exploitation is actually empathy: by depicting what’s supposedly aberrant with a special fellow feeling for the marginalized, Arbus expands our notion of what’s normal. The seeds of this narrative were laid by John Szarkowski, MoMA’s longtime photography curator and Arbus’s most important champion, who, praising her “truly generous spirit,” wrote that her pictures “record the outward signs of inner mysteries” and “show that all of us — the most ordinary and the most exotic of us — are on closer scrutiny remarkable.”

This sentiment has proven remarkably durable: in a review of Cataclysm, Pulitzer Prize-winning Washington Post critic Sebastian Smee wrote that Arbus’s subjects “no longer look like ‘freaks.’ They look like what they are: fellow human beings.” The world has caught up to Arbus, Smee suggests. We’re finally prepared to appreciate her humanistic project for what it was. But this is Arbus defanged, banalized — Arbus as the forerunner of body positivity, of diversity, of love is love is love. Smee, like Szarkowski and many after him, centers the artist’s life story: “Arbus was a complicated person. Depressive, restless, and sexually adventurous, she craved intense experiences. But it was her complexity that allowed her to see and capture the complexity and unknowability of her subjects.” In this telling, Arbus’s biography, which testifies to her own “inner mysteries,” is used to help straighten out the problem of a privileged white woman on the prowl for weirdos — a woman who once compared taking pictures to being a butterfly collector, or Dick Tracy. 

And yet it’s precisely the photographs’ resistance to resolution, their anti-essentialism about the people they show, that continues to act on us long after their shock value has waned. Now that we’ve grown used to the reflexive celebration of difference, and to prizing positionality as the key to understanding any artwork, Arbus’s pictures unsettle us with their refusal to yield answers to the kinds of quandaries that, in the five decades since she catapulted to fame, we’ve only grown more impatient to resolve. Are they ghoulish? Are we ghoulish? Would it be better to look away? 

 

Arbus’s short life could be told as a riches-to-rags tale; an allegory for the cultural tumult of the sixties; or, even in sympathetic hands, yet another fable of the sexy suffering female artist. Born Diane Nemerov to a well-to-do merchant family in New York in 1923, she and her older brother (the celebrated poet Howard Nemerov) were educated at Fieldston, a progressive private school favored then as now by the bien pensant upper-middle classes. It was thought that she would become a painter, though her probing school essays and often poetic letters reveal that she was also a serious, opinionated student of literature. At only eighteen, in her first step down the social ladder, she married Allan Arbus, a City College boy who worked in her father’s department store. After the war, the couple made ads for the family business before opening a commercial photo studio together, which produced images for magazines like Glamour and, later, Vogue. Diane came up with the concepts for their shoots; Allan was the photographer. 

Then one day in 1956, fed up with the fashion work, she quit the shared studio. She had been taking her own pictures for more than a decade already, but now she began studying with the Austrian émigré photographer Lisette Model and working in earnest. As she found her professional footing, she and Allan grew apart, eventually separating in 1959. (They would always remain touchingly entangled, not least because they had two daughters, and Allan supported Diane morally and materially for the next decade.) Meanwhile, Arbus shot celebrities for The New York Times Magazine and regularly contributed to Esquire, whose New Journalism aesthetic fit her own. Her editors there, and at Harper’s Bazaar, were receptive to her interest in subcultures, social interstices, and twilight zones — Arbus immediately gravitated toward Coney Island, the subway, Central Park, and the cinema, where she took striking stills of faces on the big screen. She shot Mr. Universe and Miss New York competitors, debutantes and Bowery bums, and other representatives of the kinds of small winners and losers that populate a city like New York. Her Esquire projects from this period already reflect what we now regard as her primary preoccupation: people who were interesting to stare at, engaged in private acts and public rituals of self-display and self-creation.

While Arbus was working for magazines, she also got to know MoMA’s John Szarkowski, leaving a portfolio for his review in 1962. The museum acquired seven of her pictures two years later. And, though Arbus initially felt it was too soon to exhibit her photographs, in 1967 Szarkowski included her in a MoMA show called New Documents alongside Garry Winogrand and Lee Friedlander. The influential exhibition brought together what Szarkowski saw as an emerging generation of documentary photographers. Unlike those interested in bringing about political change (Lewis Hine, Jacob Riis) or in documenting and dignifying American folkways in order to shore up the mission of the New Deal (Dorothea Lange, Russell Lee), the New Documentarians’ aim, Szarkowski wrote, was “not to reform life but to know it.”

Arbus got her own room in the show, as well as most of the critical attention. Fascinated yet bewildered, reviewers didn’t seem to know what to make of her pictures. “Even her glamour shots,” noted the Times, “look bizarre.” In Arts Magazine, Marion Magid admired how Arbus satisfied a “craving to look at the forbidden things one has been told all one’s life not to stare at.” She described the show as “a kind of healing process,” in which viewers were “cured of our criminal urgency by having dared to look. The picture forgives us, as it were, for looking.” Arbus herself didn’t think her photographs were so pure. She later spoke of her photographic encounters as acts of persuasion, even cajolery. “I think I’m kind of two-faced,” she once said. “I’m very ingratiating. It really kind of annoys me. I am just sort of a little too nice. Everything is Oooo. I hear myself saying, ‘How terrific,’ and there’s this woman making a face.”

If Magid found healing in Arbus’s portraits, Arbus herself was increasingly unwell. A working single mother of two, her physical and mental health were becoming an issue. In 1968, exhausted and short of money despite the success of her MoMA debut, Arbus checked herself into a costly private hospital for a three-week stay. Doctors found that her liver had never fully recovered from the bout of hepatitis she’d had two years before, and was under added stress from birth-control medication and antidepressants. “When I was most sick and scared,” she wrote after coming home, “I was no longer a photographer (I still am not and something about realizing that I don’t Have to Photograph was terribly good for me).” That same year, Arbus took on teaching — which she despised — to make ends meet. She was working feverishly but also living ever more riskily, purportedly approaching strangers on the street and propositioning them for sex. All the while, she continued to write compulsively to her closest interlocutor and longtime lover Marvin Israel, the art director at Harper’s Bazaar for a time and a shitty media man avant la lettre; he had a strenuous affair not just with Arbus, but later, it was rumored, with her daughter Doon as well. 

 

Despite the difficulty of this period, Arbus began work on a new set of pictures that she described as “FINALLY what I’ve been searching for.” Now known as the “Untitled” series, these images were shot at two New Jersey psychiatric hospitals, but beyond the walls of the institutions themselves — her subjects are seen outside in their Halloween costumes, or standing with friends on a playing field, or even at the swimming pool. Though some now count among Arbus’s most famous photographs, she never exhibited them; the New Documents show had been the first of her life, and it also turned out to be the last. In 1971, professionally ascendant but ever more unwell, Arbus killed herself in her West Village bathtub.

When, the following year, Szarkowski mounted the MoMA retrospective, Arbus herself was in some sense on display. In a Times review headlined “Her Portraits Are Self-Portraits,” the critic A.D. Coleman called Arbus’s work “the naked manifestation of the artist’s own moral code in action,” which “demanded her own self-revelation as the price for the self-revelation of her subject,” subtly implying that Arbus had paid the price for her art. Lines for the show went around the block; the accompanying monograph, which Aperture initially had to be persuaded to produce, sold out twice. (There are now more than half a million copies in print.) Once a well-regarded, if idiosyncratic, working photographer, Arbus was now world famous, and critics rushed to answer the riddle posed by what was now an oeuvre. In Time, Richard Hughes wrote that she “has had such an influence on other photographers that it is already hard to remember how original it was.” In Camera 35, the critic Lou Sterner disagreed: “Rarely have I read as much nonsense as the aura of almost patronizing worship covering the work of Diane Arbus at the Museum of Modern Art.” 

It was this sacred aura that Susan Sontag — whom Arbus had photographed in 1965 — sought to dispel. In “Freak Show,” the 1973 essay in the New York Review of Books which would become the second chapter of On Photography, Sontag accused Arbus of engaging in one of “art photography’s most vigorous enterprises — concentrating on victims, on the unfortunate — but without the compassionate purpose that such a project is expected to serve.” Arbus showed “private rather than public pathology, secret lives rather than open ones,” Sontag wrote, finding fault with the “inner mysteries” that Szarkowski had praised. In her reading, Arbus was a spoiled brat from a “a verbally skilled, compulsively health-minded, indignation-prone, well-to-do Jewish family” using her camera as “a kind of passport that annihilates moral boundaries and social inhibitions, freeing the photographer from any responsibility toward the people photographed.” The whole project “was her way of saying fuck Vogue, fuck fashion, fuck what’s pretty.” 

Many critics have since dismissed Sontag’s ethical conclusions (Peter Schjeldahl called the essay “an exercise in aesthetic insensibility”), but it’s hard to argue with her analysis of Arbus’s class position. As Arbus once blithely admitted, “One of the things I felt I suffered from as a kid was I never felt adversity.” The tragedy of her suicide seems to make it all the more tempting to put Arbus front and center — to frame her, as one scholar put it, as “Sylvia Plath with a camera.” The three English-language biographies have only shored up the mythology, even as they try to pick it apart. Patricia Bosworth’s gossipy 1984 volume, based on interviews with Arbus’s family and friends, is much less interested in photography than sex (“a pall of smut hangs over the book,” one critic wrote). William Todd Schultz’s cringeworthy 2011 psychobiography, An Emergency in Slow Motion, draws on new interviews with the psychiatrist who treated Arbus at the end of her life. Arthur Lubow’s definitive 800-page tome from 2016 is more measured, but still can’t resist alleging that Arbus was engaged in an incestuous relationship with her brother Howard until just weeks before her death. This almost comically scandalous claim is based solely on the testimony of Arbus’s psychiatrist, who hadn’t seemed so confident about that assertion when speaking to Schultz a few years earlier. Though the books get longer and longer, they primarily hash and rehash her various romantic entanglements, family dramas, and insecurities. Arbus’s actual work is too easily collapsed into pathology — “a symptom,” as Schultz writes, “of her psychological dislocation, her isolation, her alienation.” 

This might explain why, for decades, the Arbus estate kept countless personal documents, as well as photographic negatives, locked away. Doon wrote that after 1972, the Arbus “phenomenon” started “endangering the pictures.” In 2003, the estate broke its silence, publishing a flood of excerpts from letters and diaries in a book titled simply Revelations. The aim wasn’t transparency so much as superfluity: “This surfeit of information and opinion,” Doon hoped, might “finally render the scrim of words invisible so that anyone encountering the photographs could meet them in the eloquence of their silence.” Even the estate seemed unable to deny the allure of the troubled female artist — the book reproduces Arbus’s autopsy report in full, including descriptions of the ligaments she cut when she ended her life and the weight of her heart (320 grams). As Janet Malcolm observed, Arbus emerges from Revelations “looking just as brooding and morbid and sexually perverse and absurd” as before.

No amount of biographical information seems capable of liberating Arbus from the critical groove in which she’s been stuck for five decades. The emphasis on psychology — the photographer’s, her subject’s, our own — has helped make these pictures famous (and surely boosted their value), but it’s also primed us to misread or even ignore what’s most powerful about them, which is how they thwart any access to internality, how their visual precision complicates moral clarity. In Arbus’s hands, photography refuses to do what biography most hopes to: to fix or capture a self. Instead, her genius is in deconstructing the illusion of identity, tripping us up in the rush to empathy. These pictures aren’t about “being seen” so much as being looked at, and looking.

Take Arbus’s famous “A naked man being a woman, N.Y.C., 1968.” In front of a cot strewn with laundry, a man stands in delicate contrapposto. His face is made up; his penis is tucked between his thighs. He looks straight at the camera, his exquisite poise at odds with the seediness of his surroundings. As Hilton Als noticed, the man looks curiously like Botticelli’s Venus; as Arthur Lubow pointed out, the curtains that frame him recall the baldacchino of Renaissance portraiture. My eye always gravitates towards the man’s feet — the contrast between the light step of his right foot, hovering with genuine grace, and the beer can next to them. The man is carefully organizing himself — as in many of Arbus’s portraits, there appears to be a mirror in the room — but he’s in the midst of a disturbingly disorganized mess. We’re witnessing a kind of performance, complete with curtains and makeup, but it’s impossible to say if it’s “a deeply private exchange with the self,” as Als has written of this picture, or a burlesque.

Equivocation between lofty allusions and gritty details, idealized dreams and stubborn realities, is everywhere in Arbus’s work. The subjects of “A husband and wife in the woods at a nudist camp, N.J. 1963,” who stand side by side beneath the trees, their imperfect, locker-room bodies on full display, are Arbus’s Adam and Eve. (In an unpublished text meant to accompany the pictures in Esquire, she described the camp as a dime-store Eden.) Her portrait of “Russian midget friends in a living room on 100th street” contains a mirror that evokes Velázquez’s “Las Meninas” (not to mention the people with dwarfism), a painting that delights in the mechanics of visual representation. And the processions of mentally disabled people from the “Untitled” series, wearing masks and costumes on Halloween, recall Bruegel’s scenes of joyous peasant revelry. What should we make of the gap between these photographs’ refined composition, even artiness, and their earthy, unbeautified content? Does Arbus’s photograph of the man pretending to be a woman send him up, or support him? Or is the real joke on the viewer who insists on one interpretation or another? 

Diane Arbus, Tattooed man at a carnival, MD. 1970 © The Estate of Diane Arbus

 

After 50 years of social change and ever-increasing visual inundation, no one will be surprised by “Tattooed man at a carnival, MD. 1970,” whose gray eyes look straight into the camera from beneath the cigarette-smoking skull inked on his forehead, or by the caked makeup and lazy eye of “Girl with a cigar in Washington Square Park, N.Y.C. 1965,” and certainly not by “Blonde female impersonator with a beauty mark in mirror, N.Y.C. 1958.” Today, you’re much more likely to wonder why Arbus insisted on the biological gender of her queer subjects, or to pause over the pictures of mentally disabled people from the “Untitled” series, who did not, and probably could not, consent. (She was able to gain access to one institution by calling in a favor from a friend in New Jersey politics.) What makes the pictures not just inscrutably beautiful but also subtly subversive is the indeterminacy intrinsic to the photographic medium, which Arbus intentionally brought to the fore. 

Arbus was not the first to work at the social margins. Photographers, whose own status in the artistic hierarchy has often been marginal, have always gravitated toward the people and places that fine art traditionally excluded, from E.J. Bellocq’s portraits of sex workers in New Orleans to Walker Evans’s lovingly antiquarian pictures of painted billboards and James Van Der Zee’s pictures of black life in New York (to name three artists important for Arbus). And many photographers known for their glossy images also spent time in the shadows: Peter Hujar and Richard Avedon both shot pictures in mental institutions before Arbus did; a generation earlier, Brassaï took nostalgic photographs of tramps and prostitutes, eventually collected in The Secret Paris of the ’30s. Arbus’s own teacher, Lisette Model, famously made a portrait of a well-known “hermaphrodite” she called “Albert / Alberta,” among other characters. And of course there’s Weegee, whom Arbus helped rediscover, and whose strobe-lit car crashes and crime scenes turned ambulance-chasing into an art.

Arbus’s mature pictures, though, are more formal and controlled. Many of her earlier photographs had a snapshot quality — intentionally grainy or roughly cropped. But in the late fifties, around the time she started studying with Model, Arbus refined her techniques: she strove to make the clearest, crispest prints possible; she stopped cropping and began printing the borders of the negatives, as proof of both the photograph’s unedited integrity and its status as mere image. These practices, she said, have “to do with not evading the facts, not evading what it really looks like.” She called this “scrutiny.”

“What it really looks like,” though, wasn’t just a matter of chance — and Arbus knew it. Even her intimate pictures are never candids. She was interested in how people posed for her camera and for the world. “Everybody has this thing where they need to look one way but they come out looking another way and that’s what people observe,” she wrote:

You see someone on the street and essentially what you notice about them is the flaw.… Our whole guise is like giving a sign to the world to think of us in a certain way, but there’s a point between what you want people to know about you and what you can’t help people knowing about you. 

Arbus chased “the flaw” — what, at other times, she called the “anomaly” or “the Difference,” a feature that thwarts our effort to project a certain self to the world and reveals the shadow of something else. Arbus aptly described this as “the gap between intention and effect.” Advertising images — the kinds Arbus and her husband produced for Glamour and Vogue — seek to close that gap. In her art, Arbus made the gap her subject.

“Transvestite with a picture of Marilyn Monroe, N.Y.C. 1967” does this most explicitly, almost heavy-handedly. A slim, smiling person (Arbus would probably say “man”), naked except for his makeup and lacey black panties, holds up a framed portrait of the movie star next to his face. The real and the ideal are juxtaposed so baldly it’s ridiculous. But here, too, the gag could lampoon both subject and viewer: is he holding up Marilyn as aspirational (surely with a touch of irony), or as the standard against which he’s unfairly judged? The crossdresser will inevitably fail to be Marilyn, but at the same time we’ll inevitably fail to see him as anything but not-Marilyn. Both of us are blinkered by the ideal, Arbus suggests. Even in much more subtle pictures, she wants us to attend to the way a person or sometimes even an empty room tries to be something; the viewer, in perceiving that effort, always also sees its futility, too.

Photography, as Arbus well understood, is a good medium for such exposure: it shows us the stubble on a crossdresser’s face, or the tawdry gleam of a proud-looking young man’s polyester shirt, or the hoarder-level accumulation surrounding a New York society marm in her bedroom. A photograph, particularly one of Arbus’s tightly framed close-ups, inevitably records too much information, even more than the photographer knows she’s capturing at the time; there are details which won’t be revealed until the image has been developed, creating another “gap between intention and effect.” And while snapshots can eternalize the hidden elegance of a throwaway moment, when the camera is turned on someone who poses, striving for the simple legibility of an icon, it tends to make us hone in on the failure of composure — grace’s limits. What perfection or (in the case of Arbus’s identical twins and triplets) sameness there is in a photograph makes us attend all the more quickly to the flaws. “A photograph is a secret about a secret,” Arbus famously, and obscurely, said. “The more it tells you the less you know.”

The photos of mentally disabled people in “Untitled” insist that we accept what we don’t and can’t know; they’re among Arbus’s hardest riddles. Like her earliest work, they’re often taken on the fly. Their subjects, shown outdoors, rarely look straight at us. These are portraits of people who cannot fully compose or control themselves for the camera; their mental differences place them beyond the usual game of self-presentation and self-transformation that so many of Arbus’s subjects were playing — and indeed placed them officially outside of society, in institutions. The sense of play in these pictures — the “unmanaged faces,” to borrow the art historian Carol Armstrong’s phrase; the earnest and childish costumes — has a utopian quality compared to the seriousness of Arbus’s clearly posed portraits. There’s a reason that Arbus never gave them her usual descriptive yet subtly charged titles, using numbers instead. Sontag wrote, mockingly, that, “In photographing dwarfs, you don’t get majesty & beauty. You get dwarfs.” She held that Arbus failed to use the camera to confer dignity. But the straightness of the picture — unpitying but not unkind — is the point.

The portraits from “Untitled,” as well as those of the socialites at masked balls, and of other flamboyant personalities she encountered on the streets of New York, are often called carnivalesque. (There are actual carnival performers, too.) The term presumably refers to these images’ eclectic subject matter and, to some extent, their style, which is indebted to the visual rhetoric of the sideshow. But what’s truly carnivalesque about these photographs is how they invite us to look at people. The critic Mikhail Bakhtin described the carnival as an upside-down world in which the boundaries between public and private dissolve, hierarchies are overturned, and what’s typically hidden is revealed. All this leads to the fairytale scenarios we encounter in Arbus’s work: child kings, say, or offspring towering over their parents, or “men” being “women.” These surprises have the potential, Bakhtin wrote, to “liberate from the prevailing point of view of the world, from conventions and established truths, from clichés, from all that is humdrum and universally accepted.” 

That’s not to say that these photographs are revolutionary — after all, carnivals inevitably come to an end, and normalcy returns. But the photographs do have an undeniable leveling effect, inviting us to take the marginal more seriously than the powerful. Seen all together in the art gallery, they open a space, as Bakhtin put it, for “the latent sides of human nature to reveal and express themselves.” Sometimes grotesque, always beautiful, these revelations upset the oversimplifications on which our social categories rely: if you look too closely at someone else, or at yourself, anything like a coherent identity crumbles. 

We’re all freaks, then, but this is hardly a unifying cry — tempting as it may now be to position Arbus as a pioneer of inclusivity and body positivity. In an older, more powerful, and no-less-harsh sense of the word, “freakishness” is a jagged, polysemic eccentricity that reminds us of how much we have to repress and ignore when we say that we know other people. Rather than anticipating the abstraction of difference into diversity, Arbus’s carnival helps us see that what often passes as celebrating difference these days may implicitly reify it. Instead, her images break down the distinction between norm and difference altogether. This is no utopia: it’s as free from judgment as it is free from class, which inscribes the bodies shown in many of these portraits. Looking through Arbus’s lens only makes the encounter more demanding.

“It’s impossible to get out of your skin and into somebody else’s,” Arbus once said. “And that’s what all this is a little bit about. That somebody else’s tragedy is not the same as your own.” Empathy is hard, but accepting its impossibility, or its irrelevance, is harder. The challenge of Arbus’s work comes from the fact that its essential indeterminacy will never allow us fully to disentangle seeing from staring. There is no way of looking that isn’t, in some way, ghoulish. But turning away from that ambivalence would be ghoulish, too.