Survivors of 9-11 deserve better care

Inever dreamed of being a professional 9/11 survivor. I dreamed of being an architect. I was, in fact, sitting in an architectural drawing class at Stuyvesant High School in Lower Manhattan, three blocks from the World Trade Center, when my 9/11 evacuation orders came.

By the time I was instructed to “run north” with 3,000 teenagers, we had watched planes hit the World Trade Center and seen the towers fall. I got caught in a stampede outside Stuyvesant’s doors, then walked 10 miles to get away.

My classmates and I returned to our school building within a month. We were told it was safe. Years later, we learned it was not.

The federal government considers me a 9/11 “survivor” — the designation for downtown civilians affected by the attacks and cleanup. I’m certified as having four 9/11-related conditions. Fortunately, none is cancer. Many of my classmates have not been as lucky. A few have died, all before age 35.

My health, however, wasn’t the only thing changed by 9/11. Thanks to the nine months I attended school at Ground Zero, my career took a dramatic turn.

For most of my adult life, I’ve worked for the rash of organizations that came together to demand care for 9/11 survivors. Hundreds, perhaps thousands of 9/11 survivors — often traumatized themselves — are employed in the business of supporting other victims of the attacks.

But 9/11 isn’t the only tragedy to birth this kind of industry. Plenty of Americans join the field every year: teenagers looking to move on from acts of mass gun violence; people from resourcepoor communities such as Flint, Mich., who are simply asking not to be poisoned by their water; Black Americans pleading not to be wrongly killed or imprisoned.

Then there’s COVID-19. At the start of 2020, there were zero people employed in the field of advocating for COVID-19 victims. Now, there are most likely thousands.

The survivor industry is a growth industry for obvious reasons. In offering few if any basic social protections, the United States puts a huge burden on those in need of assistance after disaster.

In the 9/11 community, we have the James Zadroga 9/11 Health and Compensation Reauthorization Act, often considered a gold standard in long-term federal disaster assistance. Even this help came slowly. The estimated 400,000 9/11 responders and survivors didn’t have any federal programs until the first iteration of the law passed, in 2010, granting five years of funding for a health treatment program and expanded victim compensation fund; permanent funding didn’t come until 2019. True to form, the resulting programs have often bewildering requirements and procedures.

For instance, survivors must be symptomatic to even access health monitoring. The list of qualifying conditions is based almost exclusively on male research cohorts, so women and young people face special barriers to participating.

Just last month, Rep. Mikie Sherrill, D-N.J., petitioned to add uterine cancer to the list of Zadroga-covered conditions, because although cervical cancer and male reproductive cancers are covered, the data on uterine cancer has been considered insufficient for coverage.

All of this takes a toll. I expected to spend the rest of my life panicking at the sound of airplanes. I didn’t expect that arguing with insurance companies and the World Trade Center Health Program — something I do with frequency to navigate its intricate billing policies for myself and others — would become a form of secondary trauma.

There are clear ways to minimize the need for survivor advocacy work and mitigate harm after a major crisis. A stronger social safety net, meaningfully affordable and accessible health care, gun control, voter protections safeguarding every community’s ability to advocate for itself — all are crucial to a robust disaster response.

Such reforms are rarely glorified — they don’t get #NeverForgotten the way individual selfless acts do. But they’re what make it possible to care for victims in the long run.

As for myself, I hope one day to be granted the gift of redundancy. It’s well past time our federal institutions figured out how to care for their own without asking traumatized, disenfranchised Americans to do that work for them.

Lila Nordstrom is the founder and executive director of StuyHealth, an outreach and advocacy organization focused on young adults in the 9/11 survivor community. This commentary originally appeared in the Washington Post.