The Life You Cannot Save

A Bangladeshi girl falls ill after surviving a factory fire. Did labor activists misrepresent the facts about her illness?

 
Before the Tazreen factory stopped smoldering, it was clear that the fire that destroyed it was worse than all others. Tazreen, a factory in Nischintapur, was one of thousands in Bangladesh that produced low-priced garments for Walmart and other American stores. Located in a grimy industrial suburb on the outskirts of Dhaka, the factory employed hundreds of laborers who made as little as a dollar a day and worked up to twelve hours at a stretch. One of them, Sumaya Khatun, would become an unlikely protagonist in the industry’s historic changes — one whose life exists in the crossroads of honesty, morality, and empathy.

On November 24, 2012, a fire spread throughout the Tazreen factory after starting in a mound of cloth scraps. By the time the inferno had hollowed the factory into a blackened shell, 112 workers had died, largely because the building had just one staircase and doors locked from the outside. Hundreds more survived by jumping from top-story windows.

Public response to the fire, which was then the worst industrial disaster in Bangladesh’s history, was immediate and intense. Prime Minister Sheikh Hasina called the atrocity politically-motivated “sabotage.” Activists and workers, meanwhile, had long warned that poor safety standards in Bangladesh’s garment industry would result in disaster; the proof became a rallying cry.

To Sumaya Khatun, though, the fire was neither of those things. During the blaze, the sixteen-year-old Tazreen worker had run through suffocating smoke. Before she found an escape, her foot caught on a sewing machine. She pitched forward, smashing her face into the floor. She got up and ran again — and again fell, knocking herself senseless. Coworkers passed her slender form on their way out a window to an adjacent roof. When Sumaya awoke in a hospital bed, her story became one of unlikely survival.

Or so she thought. Two months later, Sumaya got a headache. As the pain wore on, its cause would slowly become clear. As her sickness progressed, labor activists would begin to promote her as a symbol of their struggle. “These garment factory disasters are one of perhaps a few completely morally clear things in this world. There’s not a lot of ambiguity in identifying who should be accountable,” one would say.

But the situation was riven with moral ambiguity. While changes of historic proportion would arise from labor organizers’ appropriation of Sumaya’s name and face, their intervention raised questions about the nature of her illness, the ethics of activism, and who was, in fact, responsible for her death.
 

The ants behind her eyes

The pain behind Sumaya’s right eye began in January 2013, about six weeks after she survived the fire. It was unlike anything the girl, a worker since age eleven, had felt before. As the pain persisted and worsened, Sumaya adopted a habit of running her fingers along her eyebrow ridge, a gesture that seemed as useless as scratching an itchy foot through a shoe. She described the unabated pain in poetic terms: “Small insects bite me from inside. They like to eat my brain. These monstrous ants are walking beneath my skin, right here, behind my eyebrows.”

Her mother thought of the headaches in another way: as an impossible financial burden. After years working in a brick kiln, Amiran, a short, sturdy woman with betel-stained teeth, possessed little more than a one-room shack and a weary body. Aged thirty-five or so — she had neither ID nor a clear notion of her birthdate — Amiran had been a mother for twenty years. For many of these, she’d raised her children single-handedly in an industrial area outside Dhaka. When Sumaya fell ill, Amiran asked an uncle for help, then took out a microloan, and finally sold the household’s possessions. Whenever the effort to scrounge money succeeded, mother and daughter sought care at a succession of healthcare facilities in urban Mymensingh and Dhaka. When it failed, as it often did, Sumaya went without.

The inconsistent care did little to ameliorate her pain, which advanced until the girl became nearly psychotic from suffering. Amiran bathed Sumaya’s disfigured face in cool water and slaked her misery with handfuls of tranquilizers — calming her, she said, so that the neighbors could get a break from her screaming.

The breaks were temporary at best. During scattershot clinic visits that winter, doctors diagnosed Sumaya’s illness: a brain tumor behind her eye. In spring, a surgeon in Dhaka operated, removing part of the mass through her nasal passage. The effort mattered little. As time wore on, the unusually aggressive growth began to push Sumaya’s right eye forward and down.

By the time labor activists learned of Sumaya’s plight, she could neither close the right eye nor see out of it. When a few dispatched themselves to Ashulia in August 2013 to take Sumaya to the hospital, they found a half-blind girl half-psychotic from pain, begging to be allowed to commit suicide to escape the ants behind her eyes.
 

The activists

The people who came to help Sumaya had her admitted to United Hospital, a large new building in Dhaka’s tony Gulshan neighborhood. While she received advanced diagnostics and radiation, they worked to formulate a plan to help her.

The loose cluster of acquaintances and friends had no particular ambition to work with a cancer patient. Rather, the group comprised labor rights activists from Bangladesh and abroad — people whose primary purpose was to respond to incidents like the Tazreen factory fire in November 2012 and, later, the deadly collapse of Rana Plaza in April 2013.

Among them was Shahidul Islam, known more commonly as Sobuj. Though he labels himself a journalist, many consider the lean, bespectacled forty-five-year-old more of an informal advocate for workers in the lowest tiers of Bangladesh’s socioeconomic hierarchy. Between organizing campaigns and attending marches, he spends his time visiting garment workers and attending to the range of urgencies created by their destitution. “He’s the best,” an international union organizer once spontaneously told me, explaining that Sobuj’s uncommon empathy led people to trust him without question.

If Sobuj was the heart, Saydia Gulrukh, a doctoral candidate in anthropology at the University of North Carolina, was the brain. Gulrukh, a rare upper-class Bangladeshi woman collaborating with garment workers, factored heavily in campaigns for legal and social support for Tazreen survivors. Often working as a media spokesperson, she’d been prominent in activism after the Rana Plaza factory collapse in April 2013, doing everything from running press conferences to mounting gallery shows of photography from the wreckage.

Laura Wagner, an American anthropologist and author, had traveled to Ashulia with her longtime friend Gulrukh in January 2013. She was struck by the photos of deceased Tazreen workers that many locals showed her. When Gulrukh heard of Sumaya’s plight and asked Wagner to help raise funds for medical expenses, Wagner pledged to “use my relative privilege and symbolic capital as much as I can.”
 

An identifiable victim

The goal was to convert symbolic capital into the real thing. By early summer 2013, Wagner had set up a page on the crowdfunding website GoFundMe. The page appealed for private donations with a video of the thin girl, face distorted by her tumor, outside a shack in Ashulia. Accompanying text identified the disease as inflammatory myofibroblastic tumor (IMT), a diagnosis rendered at one of her many doctor visits. It outlined a rough medical plan to save the girl’s life.

The pitch equivocated over how Sumaya’s tumor started, but made much of her presence at the Tazreen factory fire. In August 2013, Wagner (with a co-author, labor organizer Laura Gutierrez) published “One Child, Global Accountability,” a Huffington Post article that identified Sumaya’s illness as an emblem of the grisly Tazreen atrocity and its aftermath. “Sumaya’s medical tragedy [is] far from merely anecdotal,” the article said. It “illustrate[s] the ways that local, national, and global politics and economics dictate the lives of the very poor, in Bangladesh and beyond.”

The appeal worked. Soon, Sumaya was receiving more press attention, sympathy, and financial support than all the other Tazreen survivors combined. Her GoFundMe page raised over $3000 in donations — an amount a typical Bangladeshi factory laborer would work the better part of a decade to earn.

The outpouring wasn’t a surprise. In his 2009 book The Life You Can Save, ethicist Peter Singer recounts research on donations and the efficacy of fundraising and awareness-raising techniques. The findings are consistent: people who are asked to engage with a cause will give more time and money if the pitch implies it will help one specific individual. “This ‘identifiable victim effect’ leads to ‘the rule of rescue,’ ” Singer writes. “We will spend far more to rescue an identifiable victim than we will to save a ‘statistical life.’ ”

In fact, Sumaya’s illness also raised the profile of the activists working on her behalf. By the time they’d come to help her, the Tazreen fire had faded from headlines, displaced by the even larger Rana Plaza factory collapse and by myriad unrelated political conflicts that plague Bangladesh. But with her name and disfigured face in public view, their cause was back in the headlines.
 

The selling point

The people alleging that there was “not a lot of ambiguity” in the situation had wandered into dubious territory. In her Huffington Post article, Wagner wrote, “Doctors… speculate that the blunt trauma,” that Sumaya sustained to her face during the fire, “contributed to the cancer’s rapid spread.” The connection was the selling point of the fundraising campaign. Was it accurate?

Inflammatory myofibroblastic tumor is “an extremely rare form of childhood cancer,” explains Habibul Ahsan, a cancer researcher at the University of Chicago. (Ahsan, who is of Bangladeshi origin, has spent much of his career on epidemiology surveys of cancers in his home country.) The reason a specific person experiences the disease, he said, is often unidentifiable. But the problem lies in defects of molecular machinery within a cell, which prompts the cell to multiply out of control and destroy healthy tissues. Ahsan says that as broad and brief an influence as blunt trauma could not induce a tumor to grow.

Dr. Sunatu Chaudhuri, who confirmed Sumaya’s diagnosis and oversaw her radiation at Dhaka’s United Hospital in late summer 2013, agrees. The blows to the face Sumaya suffered while escaping from the fire had no relationship with the brain tumor a few inches behind that spot.

Sumaya herself had an alternative theory. “The black poisonous smoke I inhaled while I was inside the blazing factory now turned into small insects,” she told one activist that summer. “They will eat me alive.”

Sumaya Khatun (Credit: Saydia Gulrukh)

But Ahsan called the idea of a tumor arising from a single exposure to smoke “almost impossible.” Chaudhuri noted some cancers — “There is silicosis, for example,” informally known as coal miner’s lung — that can come from exposure to polluted air. But like Dr. Ahsan, he said all such cases require chronic exposures to carcinogens over years or decades. (Medline, a web-based clearinghouse of medical facts, lists forms of silicosis that take either twenty years to develop or five to fifteen years, calling the latter “accelerated.”) Inhaling fumes in a fire for less than an hour couldn’t prompt the growth of a tumor, and the onset of severe symptoms a bare two months after the fire would likewise be implausibly swift. If Sumaya’s tumor came from a toxic exposure inside a factory, Ahsan says, it was a different, chronic exposure, far before the fire ever happened.

Chaudhuri agreed. “In this case,” he said, “I don’t see the connection.” Simply put, the doctors said, the selling point of Sumaya’s story was false. The factory fire and the tumor were unrelated.
 

Blindness and plan B

If the activists misunderstood the disease’s cause, they might be forgiven for deferring to the patient’s self-diagnosis. But if they accepted her etiology, the activists seemed to feel no consistent urge to follow the teenager’s lead on other matters. Eager to save her life, they failed to ask Sumaya if she wanted her life to be saved.

Her suicidal gestures abated when painkillers allayed her agony. But even as Sobuj attended her United Hospital room with such vigor that he exhausted himself, Sumaya and her family remained fatalistic. By mid-September, as Sumaya lay in her beige hospital room overlooking a wealthy neighborhood, her mother told Sobuj that her hope was fading. “If Sumaya goes blind,” she told Sobuj, “she might as well be dead.”

The remark proved prophetic. That week, Sumaya lost vision in her left eye. As the right eye had ceased to function months before, Sumaya was now entirely blind. Her quality of life would be irreplaceably reduced — a troubling loss to a girl who’d been malnourished even in the best of times.

Worse, the change signaled that her tumor was growing. Sumaya’s radiation treatment was failing.

The reality seemed hard for the activists to accept. Caught between sympathy for Sumaya, simple denial, and the emotional link they’d created between her illness and the murders of other workers, they were undeterred from saving her life. One (who asked his name not be printed) insisted that anything other than aggressive treatment would be cruel negligence, proclaiming something Sumaya herself had never said: “She wants to live!”

On the GoFundMe page, activists had announced a plan to seek care in India. Although many Bangladeshis travel abroad for medical procedures, the idea that crossing the border might be life-saving for Sumaya had dubious clinical merit. Dr. Chaudhuri said, “The consequence would be the same.” It also involved complicated efforts to secure passports and visas — which in turn required finding Sumaya’s father, whose presence in her life had long been unreliable. Even after securing his signature, bureaucratic slogs with the government of Bangladesh and Indian High Commission gobbled interminable weeks.

Around the same time Sumaya went blind, it became clear the documents might never arrive. Via group emails, activists debated a new tack, using information gleaned from Sumaya’s charts. Dr. Chaudhuri had sent samples to Tata Medical Center in Mumbai for confirmatory diagnostic testing, including a test for anaplastic lymphoma kinase, an enzyme that makes tumors susceptible to a drug called crizotinib. If Sumaya’s tumor was ALK-positive, activists hoped to secure free doses of the drug — likely via a Western pharmaceutical corporation’s compassionate use program — and then fly the drug to Bangladesh, where Sumaya would remain. The plan hinged on multiple unlikely chances, but the activists were excited. This could be the first effective treatment Sumaya would receive.

Like the lengthy medical charts Sobuj neatly compiled, however, the discussion of crizotinib was written in English. Amiran and Sumaya, illiterate and monolingual Bengali-speakers, were excluded from the planning process as if their wishes were didn’t matter.
 

“Whose money is it?”

Yet Sumaya and Amiran weren’t shy about their expectations of the future.

By early September, United Hospital had discharged Sumaya to a guesthouse in a nearby bazaar. Between radiation treatments, Sumaya passed time in a stuffy room with two narrow beds and a static-filled TV. She complained of boredom. The chances to enjoy the neighborhood, she told me, were scotched by encroaching physical weakness. These declarations of debility felt less like an acknowledgment of reality than an announcement of resignation.

At times Sumaya was forthright, even insistent. One night, when I pressed her about the possibility of effective treatment, she said that her permanent blindness was ruinous. When I asked if a non-governmental organization might help her cope with the blindness, she said it was futile, muttering a phrase my translator conveyed as, “I’m not medically stable.”

At other times, she seemed energized by her plight. Occasionally, she had the strength to shriek and hit her mother with closed fists — an outpouring, it seemed, of her frustration at being trapped in a weak, sightless body. Amiran bore the outbursts with mute forbearance.

Amiran’s resignation also ran deep. She saw little reason to pursue extraordinary measures for Sumaya, whom she consistently acknowledged as terminally ill. On a hot night that month, she sat on a low stool in the kitchen of the guesthouse and explained her reasoning.

Amiran was the mother of not one child, but three. The oldest, Asma, was twenty and married. But the youngest, a boy, was only eight years old. Neither Asma nor the children’s father could afford to care for him — and since Amiran was now with Sumaya in Dhaka, she had had little choice but to place him as a servant with a wealthier family. “I would rather not have him work in someone’s home,” she said. “If the situation were different, he’d be going to school.” She insisted that his wellbeing should be a priority equal or greater to Sumaya’s health, since the boy had a viable future.

Amiran’s anxiety over her son translated into acute annoyance at Sobuj, who was marshalling Sumaya through her United Hospital visits. To questions about future treatment plans, she responded by asking where the fundraising money was going. “Whose money is it?” she demanded.
 

The uses of Sumaya

Disagreements were not limited to issues of treatment or money. Although the fundraising pitch did not say so, activists hoped to use Sumaya’s case to push for criminal proceedings against Tazreen’s owner, Delwar Hossain. While Wagner fundraised, her friend Gulrukh and a local barrister, Jyotimir Barua, filed a case with Bangladesh’s High Court. Their complaint demanded factory owner Delwar Hossain’s arrest, and an attached petition sought care for Sumaya’s cancer.

This time, the allegation that her cancer arose from the fire was entirely unambiguous. Local press reported that the petition advanced a new, even more implausible theory: the tumor arose from Sumaya’s fall from a window of the burning factory.

If the case was victorious, Hossain would be the first factory owner held responsible for workers’ deaths in Bangladesh in over two decades. When he was tried for murder, Sumaya would be listed as the 113th victim.

When I asked about it, Amiran and Sumaya were unimpressed. Amiran sneered at the mention of Delwar Hossain’s name, but scoffed at the question of Sumaya’s future impact, saying she had little time to worry about anything but the illness itself. A broader vision — perhaps always slightly beyond reach of the ultra-poor — was extinguished by this stifling, overwhelming present. Regarding activism, Amiran simply said, “I don’t care.” Sumaya, sitting beside her, shrugged and turned away.

Rather than sharing campaigners’ aims, in other words, the family seemed to have traded away things that, to them, had little value: a public image that didn’t exist until activists created it; a sympathetic face to attach to a deadly but largely forgotten atrocity; and the chance to make history in a way that they could not envision, and that their loved one would not be able to enjoy.
 

Victory, defeat, and a “loving death”

A week after Sumaya last saw sunlight, one of her supporters waved a glowing phone bearing good news: her tumor was ALK-positive. With luck, crizotinib therapy would be a possibility for Sumaya.

It was the second triumph that week. On September 23, the High Court had ruled in favor of Gulrukh’s petition. The government was ordered to begin paying for Sumaya’s medical bills within seventy-two hours. Sumaya, now so fragile she could barely rise from bed, was an “identifiable victim” — and the judge had rescued her.

The court victory was symbolic. No one believed that the Bangladesh Garment Manufacturers and Exporters Association (BGMEA), the government office charged with funding her care, would actually do anything. Earlier that year, activists had repeatedly visited the office to demand help. While a BGMEA official had begrudgingly shown up at a hospital and paid for one injection, no amount of pressure could extract their steady engagement — and a court demand wouldn’t change that. The ruling was nonetheless a watershed moment in Bangladesh, where very few factory owners have had to answer for a worker’s suffering.

Whatever uplift anyone felt was short-lived. Soon after, the results of diagnostic images showed Sumaya’s tumor had metastasized all over her brain and body. Sumaya’s prognosis, always grim, had become undeniably terminal.

The bad news had a clarifying effect. The sweeping plans for shipments of expensive medications quickly evaporated. Sumaya stopped radiation treatments shortly thereafter. Eventually, she moved from the United Hospital guesthouse back to her home in Ashulia, and then to Bangabandhu Sheikh Mujibur Medical University Hospital in Dhaka, where she stayed mostly in a palliative care ward. Amiran, meanwhile, recovered her son from servitude and sent him to school. Slowly, the family prepared for a death.

The activists did the same. If their work had been exploitative of Sumaya, they now compensated for it with compassion.

Saydia Gulrukh attended the girl’s bedside even after it became clear the government would ignore the court order to fund her care, and continued showing up even after tasting victory again on February 9, 2014, when Delwar Hossain became the first Bangladeshi factory owner charged for the deaths of workers in over twenty years. She came after a third victory on March 9, when he was jailed. In an interview that week, she said she still wanted High Court judges to charge Hossain with murder for Sumaya’s passing — but admitted it would be a symbolic increase over the charges he faced for the 112 deaths that occurred during the factory fire. The goal, she said, was to ensure Sumaya’s family received compensation, “so they never have to go back to working in those conditions.”

Laura Wagner seemed to keep more of her certitude. But by late February 2014, she also acknowledged that Sumaya’s cancer was “a very very rare tumor, one that is horrible and aggressive and difficult to treat even under the best circumstances.” About her ongoing support, she said, “At this point [it] means raising money… so her younger brother can perhaps have a more just life than she has.” Two weeks later, she addressed Sumaya herself in an article published in a Bangladeshi English-language newspaper: “It would have been better for you to be a girl than to be an emblem. It is too late for you to have a good or happy life… but perhaps you can have a loving death.”

Sobuj Islam embraced that goal too. He treated Sumaya like she was his own child, describing her as “my dearest love.” With the acute empathy that characterized his decision-making, he wept over her hospice bed.

Sumaya recognized her visitors even in her last days. She never lost her cognitive abilities, despite the tumors slowly overtaking her brain tissue. “She’s right here with us,” Gulrukh said in her waning weeks. “She can hold a whole conversation.” More remarkably, the care had defeated her suffering. The girl once nearly driven to suicide by her physical pain, had become a calm, steady presence — and remained so until the evening of March 21, when she died in her mother’s arms in Ashulia.
 

The precise opposite

Despite the outpouring of compassion, however, the official story never changed.

Just over a week after Sumaya died, Gulrukh wrote an email detailing Sumaya’s last days: “[A] few weeks before her death, Caritas [an NGO] began to process her family’s compensation claim considering her as dead… Alas! She did not fall under any category of victims. She was not injured in the conventional sense, neither did she die on that fateful night of November 24, 2012 to become a deceased worker.” Yet Gulrukh continued blaming the girl’s passing on the Tazreen atrocity. Describing Sumaya’s death, she wrote, “Even in her last breath she was fighting the beast, the insect that she inhaled during the factory fire.”

Gulrukh also vowed to continue promoting her cause with Sumaya’s name: “We will continue to tell her story as it unfolds… The struggle of story-tellers against power is the struggle of memory against forgetting… May her memory continue to haunt us.”

But if “these garment factory disasters are one of perhaps a few completely morally clear things in this world,” then the activists’ campaigns merit no such distinction. “I find them highly problematic,” ethicist Peter Singer says of the activists’ allegations. “You should not base a case on facts you know cannot be supported.”

Laura Wagner was apathetic to that concern. “To my mind, it doesn’t ‘matter’ whether the fire itself ‘caused’ the cancer,” she said in February 2014. “Whether it was the fire directly or the overwhelming toll that structural violence has taken on this child her whole life that made her vulnerable to this cancer, it’s all the same mechanisms of power. Disasters simply lay bare preexisting social and economic inequalities.”

Curiously, that naked honesty had the effect of making the activists’ claims precisely counter to real facts. The fire didn’t cause Sumaya’s disease; rather, Dr. Ahsan points out, “There might have been more attention to her treatment because she had been in the fire.” The disaster caused an outpouring of concern — attention that would not have come to Sumaya if she hadn’t been a part of the historic disaster.

Sympathies may continue to open a road to change, too, reflected in places more mundane than judge’s chambers. As Sumaya traversed clinics, for example, her charts often described her Tazreen experience in the first few sentences. The trend endured even in the hospice ward, where her doctors said outright that it was not intended to indicate her disease’s origin. (“This has already been explained to the family,” a palliative care specialist sighed about the tumor’s unknown cause.) The remark seemed to be included as an apparent mark of respect. Much like the court’s willingness to rescue Sumaya, the gesture was rare in a conservative country that often regards garment workers as little better than prostitutes.

The respect of medical staff was the least of the new sympathies. In the months after Sumaya’s passing, the labor movement’s momentum seemed only to be growing. Two international initiatives began inspecting garment factories and forcing upgrades. In August 2014, a massive hunger strike at Tuba Group, a factory owned by Tazreen owner Delwar Hossain, ended with the government offering back pay to thousands of workers, compelling Hossain to provide more. Protests over labor issues are frequent, and international support adds to their impact.

Amiran is among those protesters now. If their involvement with Sumaya began with the exploitation of a family with no political aims, activists seem to have eventually made a compelling case to Amiran. After her child’s death, Amiran began to attend labor rallies, issuing her demand for compensation via a sign she couldn’t read. Pictures of her ran in Bangladeshi papers, with captions mentioning her daughter — which meant winning, for at least a little while, the struggle of memory against forgetting.
 

Things you can’t say

Amid the sea change, the impact of Sumaya’s passing may be as unknowable as the cause of her tumor. Then again, Sumaya might not have minded. Once, on a hot night in the hospital guesthouse months before she died, Sumaya spoke frankly about her life and death. She shrugged over her social influence, more interested in the television than the conversation.

Then I asked what she thought would happen after she died. “These are things you can’t say,” she answered, with a flatness that implied many things are so. Then the slender girl settled back onto her pillows, gazing unseeing into the dim apartment, and said no more.
 
With thanks to NK for translation assistance.
 
Image of Rana Plaza factory collapse courtesy of the author.