9/11: Fighting Not To Be Forgotten

As much as the country has changed since 9/11, some things remain the same


Access to free or affordable healthcare for 9/11 survivors was a hard-fought struggle for advocates like Lila Nordstrom, who lobbied legislators for over a decade as the founder of StuyHealth, an advocacy group for impacted youths from the prestigious Stuyvesant High School, located half a mile from the fallen World Trade Center. In her new book, Some Kids Left Behind, Nordstrom takes us through her evolution from teen survivor to healthcare activist, as she, along with the rest of her class, was swept up in the tragedy. The consequences of that day and the events thereafter have been far-reaching, more than anyone could have imagined then.

For all the pomp politicians have long put into memorializing 9/11, guaranteeing healthcare for survivors never topped their priorities list. It wasn’t until 2010 that Congress passed the James Zadroga 9/11 Health and Compensation Act, named for the first responder whose death spurred strong suspicions of a link between chronic illnesses among survivors to toxins that had contaminated Ground Zero. The act set up a federal health monitoring and treatment program for 9/11 first responders and community survivors, including residents, workers, and students affected by the disaster. Five years later, Congress passed legislation to ensure the program’s longevity and reauthorize the 9/11 Victim Compensation Fund.

In the first 50 pages of Nordstrom’s memoir, we experience the catastrophe through her 17-year-old self, a chilling glimpse of the chaos on the ground in the wake of the Twin Towers’ collapse. The debris from the collapsed skyscrapers coated several blocks of the city in a hazardous haze (one of the Village Voice’s own reports noted that the smell and the smoke from Ground Zero were detectable for weeks in the outer boroughs, often mistaken for local fires). She and some other students made it out of Manhattan that day guided by a young phys ed teacher. One of Nordstrom’s classmates generously opened her Queens home — Nordstrom had refused to return to her own family in Chelsea, as nowhere on the isle of Manhattan felt safe to the traumatized teen. That need to escape finally drove the native New Yorker from the city, and she eventually built a life in California. But she was kept tethered to NYC, and by extension, to the one day she’d rather forget, by suspicious health issues that arose among her former classmates. (Nordstrom’s asthma had also worsened after 9/11.)

Myriad health reports later connected the illnesses experienced by many first responders to toxins that contaminated Ground Zero. Lesser understood was that nonresponders in the area, such as students, were also vulnerable to developing 9/11-related illnesses, ranging from chronic acid reflux to various cancers. By 2007, Nordstrom and her classmates had become part of 9/11’s survivor cohort, which grew as health experts uncovered the true extent of the tragedy’s impact. Nordstrom struggled to secure healthcare as part of a pre-Affordable Care Act generation that survived one of the worst tragedies in U.S. history —  halving her dosage to stretch out medication, flying cross-country to access the free program for survivors — and her narrative takes us through the pitfalls of advocating for a student community largely left out of the 9/11 conversation.

Nordstrom’s story is one of struggle, but it’s also rife with politics, which in America touches everything, including healthcare. While 9/11 was draped in political theater, many survivors were left without support to deal with their ruptured lives. (Nordstrom herself sought therapy 15 years after.) Not just then but now, in the COVID-19 era, politics triumph as warring ideologies fight over masks and vaccinations and lockdowns and reopenings, placing party loyalties and economics squarely above public health concerns.

Some Stuyvesant students rebelled against the politicization of their victimhood (reciting the pledge of allegiance or not became an interesting proxy for the divided student body), but as kids, they were mostly powerless against the political tide. Stuyvesant was among the first to bring their students back into downtown, just a month after 9/11 — there were six schools within walking distance of the WTC, with roughly 23,000 students in total — as school and government officials rushed to normalcy despite evidence of health risks brought up by the Parents’ Association (which hired its own environmental investigator, who found the school contaminated with 9/11-induced toxins). As Nordstrom can attest, that negligence proved disastrous.

The Village Voice was the first publication to cover advocacy efforts by affected Stuyvesant alumni, in a 2006 article, the headline of which inspired the memoir’s title. The Voice’s 9/11 reporting is heavily cited in the book, but Nordstrom ultimately laments that she was disappointed with the paper because it didn’t follow through with more coverage on the Stuyvesant students’ struggle. In her eyes, the story wasn’t deemed “sensational” enough by the paper for a follow-up, the sole trait she believes makes a topic newsworthy to the press. As Nordstrom puts it, that experience was her first lesson on the media, and spawned her negative views about the press as a whole, a perception frequently held by the politically active—from leftists to Trumpers—who feel that their cause is not advanced by mainstream media.

Stuyvesant’s push to reopen as quickly as possible while risking students’ health mirrors New York City’s tangled attempts today to return to normal amid this seesawing pandemic, including debates over school safety protocols in the face of COVID health risks to teachers and children, and rising rates of infection and hospitalization. As the delta variant triggers another surge—largely among the unvaccinated, which includes all children under the age of 12—debates around the pandemic neglect to consider the long-term risks of contracting COVID-19, designated as “long COVID” by health officials. The condition refers to health effects that can linger well after a person recovers from the virus, including brain fog, shortness of breath, and even internal organ damage. In severe cases, long COVID is considered a disability under the Americans with Disabilities Act.

Research on the true scope of long COVID is preliminary so far. The good news is that further studies are expected, after $1.15 billion in funding was approved by Congress late last year. Still, it will likely be years before we fully grasp the health struggles of today’s COVID long haulers, reminiscent of how it was for student survivors suffering from not yet understood health effects in the years after 9/11. Will long haulers, too, have to scrap for healthcare over illnesses brought on by an event outside their control? Some COVID survivor groups have already lobbied for supportive legislation on Capitol Hill, just as 9/11 survivors fought for help. In that light, Nordstrom’s story of politics over public health and the continuing fight for affordable healthcare is uncomfortably relevant today. Some things never change, as the country is divided and people, inevitably, get left behind.    ❖

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