Fireman heading south on the West Side Highway and past Stuyvesant High School (right) towards the remains of the World Trade Center on September 11, 2001. (photo by Gabe Palacio/ImageDirect)
There were children on the ground when the World Trade Center towers collapsed. Many of them attended my former high school, Stuyvesant, which was located mere blocks from ground zero.
Those students experienced a terrifying evacuation as the dust cloud surged around them — and the danger didn’t end that day. They were sent back to the building less than a month after the attack. Despite government assurances that the air was safe, many became sick breathing the acrid fumes of ground zero.
In the aftermath of the attack, author and activist Lila Nordstrom led the charge to fight for health benefits for her classmates. Nordstrom tells the story of her experience witnessing 9/11 and advocating for fellow survivors in her moving new book, “Some Kids Left Behind: A Survivor's Fight for Health Care in the Wake of 9/11.”
Nordstrom will be on The Uprising with me today from 12-1 PM talking about her story and what it taught her about the needs of communities where disaster strikes. She will be taking questions from readers in the comments on this page.
One thing that I found so impactful about this book is that it recalls the experience of being a child on 9/11 in very vivid, conversational terms.
That really resonated with me. I left Stuy for a school in Brooklyn so I had my own terrible outerborough experience that day. Still, knowing so many people who were really close to Ground Zero made it extra clear for me how much more removal I had from 9/11 than others. I think, outside of New York, people lost that perspective a bit. I remember going off to college a year later and being frustrated by feeling like people out there in New England made 9/11 "about them" even though I knew that, even as a New Yorker, it wasn't even really about me.
Lila chronicles that really well and describes how even though September 11th wasn't "the same emergency" for everyone even though "everybody on Earth believes they personally experienced 9/11." I found that to be really important perspective we see far too rarely in discussions of the attack.
All of that being said, and knowing all too well how much less impactful the disaster was for me than others, I have been thinking a lot about it as I do every year. My experience that say involved a stressful, smoke filled trip across Brooklyn. I was worried my mom, who often worked at the towers, was missing. When I got home, Stuy had been turned into a morgue. I saw footage of bodies going in and out of the school without that explanation. It terrified me that my friends there were dead until I was unable to get on the phone.
Everyone in the country - however far from ground zero - experienced some level of trauma that day. Lately, I have been thinking a lot about how simply unjust it was that children had to experience the trauma of that day and all of the fear and violence that flowed from it.
Lila's book makes this point with amazing clarity, emotion, and even sometimes, humor. With detailed research that outlines just how many policy failures contributed to children being exposed to toxic chemicals at Stuy, it is also essentially gripping reporting on a scandalous leadership failure.
I can't recommend this book enough and want to thank Lila for coming by today!
I will try to keep an eye on this thread in case anyone comes in with questions later on. We'd love to keep the conversation going!
You referenced how the official WTC Health Program didn't accommodate enough people. I just watched the Netflix movie "Worth," which provides a real in-depth look at some of the processes that were put in place to compensate and care for victims after 9/11. One thing that's really clear in looking back at this, is the fact that, following something this horrible, it's really impossible to find perfect solutions.
Obviously, with violence on this kind of massive scale, it was going to be impossible to put everything right. Still, I think your story makes clear just how badly officials handed the air quality issues in Lower Manhattan and in the halls of Stuy. Based on your years of work on this, what do you think a just response from the government would have looked like?
To be honest, I think the first appropriate step would have been to remove us from the premises, and I understand why making such a drastic choice amid the chorus of "let's get NY back to work" sounded impossible. I think however, that we have an obligation to school children in particular to take extra precautions when an unprecedented situation that is likely to cause long-term harm arises. We don't offer health coverage as a right in the US context, so when we take unnecessary risks with our kids, we're not just subjecting them to long-term discomfort or pain, we're subjecting them to long-term expense and anxiety as well. Much to my frustration, the conversation at Stuyvesant the time got bogged down in whether it was feasible to change out the school's air filters - the Board of Ed argued it was not. That wasn't going to address the issue of the air outside, which we had to walk through to get from the subway to school and which blew in every time we opened a door. Oftentimes, and we're seeing this during COVID as well, adults charged with children's' safety make assumptions not based in fact but out of their own need for certainty and control. Our city government and school administration chose to project certainty that things were fine because it was hard to fight the chorus coming from the federal government insisting we get back to work, instead of questioning whether they actually were fine. If they'd asked themselves "is this actually fine," I think it would have been clear that it was not.
One other thing I'd note as well is that, once long-term health consequences seemed inevitable, the fact that we waited for 20 years for a permanently funded health and compensation program is absurd. I got involved in this issue because I could not afford an incredibly common asthma medication that I needed to stay alive. In no other wealthy nation would this have been an acute crisis the way it was for me.
I didn't see it this way at the time, but after reading your book, I was really struck by the way kids were essentially rushed back in to Ground Zero. In the book, you described the Stuy student body as "the canaries used to promote the revitalization of downtownManhattan after 9/11."
You described the school's air vents finally being cleaned in 2002 and that they were covered in black grime. How little was done to filter the air and, in hindsight, (particularly with what we've all learned about filration with COVID), what would it realistically have taken to ensure the Stuy kids had clean air.
Realistically the air downtown generally was not even marginally safe until February of 2002, so there would have been no way to return to Stuyvesant safely before that point. Every other school in the area pushed their return to the late winter/early spring, in part because of what was happening at Stuyvesant. That's the first thing. The second is that the city got opinions from experts and made promises about how they would handle building safety and didn't fulfill most them. They said they'd upgrade our air filtration, keep the windows closed, and clean the building fully. Instead we returned to a building whose vents were inches thick with WTC dust, a great debate ensued about whether it was safer to have the windows open or closed since CO2 readings in the building were too high but the air outside was incredibly toxic, and eventually we were told it would be too disruptive and dangerous to retrofit the air filtration system (once students were back parents learned it hadn't been done prior, as promised). If those precautions had been taken and students had returned in February, it wouldn't have been ideal, but it wouldn't have been nearly as dangerous. One final anecdote on this point - in the spring of 2002 a frustrated parent actually broke into the school theater and used a box cutter to tear out some of the carpeting and get it tested. They discovered it was filled with toxic dust and that summer the carpeting had to be replaced, but at no point prior did the Board of Education intend to do that themselves.
After reading your book, I sort of feel like EPA Administrator Christine Todd Whitman's initial assertion that the air was clean seems like an original sin that a lot of bad decisionmaking flowed from. Of course, given what we know now the lack of testing and proper precautions seems, at the very least, negligent. Do you think the EPA and City officials had any culpability here and would you like to see anything done to address that?
Not only do they have culpability, but I think the one bright spot here is that the federal government has essentially recognized that. The terrorist attacks themselves are not really why we wound up with the Zadroga Act. The EPA declaration that the air was safe to breath (the first was a verbal declaration from Sept 14th, Whitman put it int writing on Sept 18th) is why our health programs exist, and that's really thanks to the work of advocates and at a few of our NYC congress members, especially Rep. Nadler, who did to document that case and make the connections between her actions and local officials' choices early on. With that said, I think city officials also have culpability in my case because, as a public school student, they did have the power to interpret her declarations differently than they did. Additionally I want to be clear that Whitman's actions, while immoral, were stemming from pressure she was getting from her boss to get the economy up and running. As much as I believe her actions were criminal, I don't think she's the only culpable government official.
But aren't we repeating aspects of history right now? The rush to get children back to schools - to restore a semblance of normalcy - despite the fact that most schools have not made the necessary infrastructure changes and despite the fact that the pandemic is raging more strongly than ever
Lila Nordstrom was a member of the class of 2002 at Stuyvesant High School. She was days into senior year on September 11th, 2001 and the school was. one of the closest to the World Trade Center.
After witnessing the attack and escaping Lower Manhattan that day, Lila became one of the leading advocates for her fellow classmates who experienced serious health problems as a result of long term exposure to the toxic air around ground zero. Nordstrom shares her stories from that day and her years of working to get care for other survivors in her excellent new book "Some Kids Left Behind."
I was actually a classmate of Lila's at Stuy, but I ended up switching schools and wasn't there that day. Among my friends, Lila is a bit of a hero and rockstar for her work on these issues and I am genuinely honored to have her here with us today.
To kick this off, your book recounts how the story of what happened to the kids at Stuy was drowned out a bit in everything else that happened after 9/11. This is really one of the undercovered tragedies of the day. For anyone not familiar with these issues, can you tell us a bit about just how toxic the air was and how many students and staffers at the school were impacted by it.
Absolutely. (And thanks so much for hosting this chat!) For those of your readers who are not local to New York, Stuyvesant sits about three blocks from the World Trade Center, and on 9/11 the southern facade was coated in WTC dust. The building was used as a command center during the initial rescue effort, but Students and staff returned less than a month later, on October 9th. The Board of Education promised to do a deep clean of the building, but once we returned parents realized the city's promises hadn't been fulfilled and the air surrounding the school was still toxic, in part because the debris barge they were carting WTC dust to for transport to the landfill was given special permission to dock right next to the school. The area was regularly recontaminated by the debris being dumped next to the school's air intake system and soon faculty and students began to experience things like nosebleeds, headaches, and chronic coughs.
At time we were told our health impacts would be only temporary but since then people have developed chronic issues stemming from these early symptoms in large numbers.
In the book, you describe what you call a "misinformation campaign" by former EPA Administrator Christine Todd Whitman, who almost immediately declared the air in the area safe. Meanwhile, months later the National Institute for Occupational Safety and Health released a report showing that over half the school staff had developed respiratory issues within a month.
Just how toxic was the air? What was done to filter it for students at the school and, over the subsequent years, how many people got sick?
As far as what was in the air - it was a mixture of things, some of which nobody thought to test for until months later. The main components of the WTC dust were pulverized concrete, fiberglass, jet fuel, etc. There were also chemicals like asbestos, lead, mercury, crystalline silica, cadmium, etc. Many of those are carcinogenic. The fires also burned continuously at the site until late January, however, which added another layer of toxicity to the air. The smoke and dust got into everything - our food, our clothes, our hair.
Though we don't have complete stats regarding who got sick and when, we do anecdotally know of at least 25-30 cancers with the Stuyvesant student body (keep in mind we're still all in our mid-30s) as well as at least three faculty deaths from cancer. We've lost a student to cancer as well, and this is surely an undercount because there's no complete data on the full scope of the affects on the Stuyvesant student body or lower Manhattan civilian population more broadly.
As for the number of people impacted, there are about 30,000 students, residents, and area workers enrolled in the WTC Health Program, but that's a massive undercount. One of the issues we face is that no agency or official body tracked our health in the aftermath of the attacks, and "survivors" (i.e. non-responders) do not have access to any of the federal health services unless they are symptomatic. This means that women and young people have a harder time getting into the program (almost all of the data on 9/11 health is pulled from male research cohorts) and therefore a harder time getting into the count.
So officials spent tens of trillions on the 'War on Terror' but didn't bother to test or adequately protect students, teachers, or first responders who were ground zero for the attack. If that doesn't show the core moral decay of this country...decades before the rise of Trumpism...I don't know what does.
We almost always rely on wartime framings when we think about large domestic crises, which means that, just like in wars, "civilians" become expendable while "heroes" sacrifice for the greater good. I've been thinking a lot about how to fight this framing during the COVID crisis since I don't want to see regular Americans, who believed the government and went out lived their lives, be scapegoated and left out of any resources that we set up for victims.
So much of what ails us is a lack of accountability at all levels of government, and throughout almost every institution. Would re-framing solve that basic problem? If so, what would the ideal framing look like?
You spent years working to get health benefits for your fellow classmates. In an environment where 9/11 and supporting New Yorkers was supposedly top of mind, why was this difficult?
One thing that I think is particularly important about your book is that you describe how the lessons you learned in this effort could apply to other disaster communities. You also provide resources for people interested in similar advocacy. What is your key takeaway about the needs of communities after disaster strikes and what needs to be done for the government to respond adequately?
One thing that always grates me is the extent to which people talk about the "unity" they felt after 9/11 without acknowledging that the same dynamics that politicized funding for NY after hurricane Sandy were present on 9/11 as well. Americans like to claim NY as a symbol, but don't like to claim New Yorkers as compatriots, so there was a massive effort to make this seem like a minor local concern and not a concern that actually was manifesting in every Congressional district (responders and survivors live in all but 1 CD I believe). This is, in part, why the conversation had to be dominated by responders, who had visible acts of heroism they could reference to blunt that resistance. The community didn't have anything like that - being a 9/11 survivor is just being a victim of bad policy. We're not heroes, we're just people, and in the American context, where even basic access to healthcare is tied to wealth and work, it's difficult to advocate for regular people. But I think to some extent Americans wanted to continue to exist in that feeling of unity, and this issue has been a persistent reminder that it never existed.
As far as what other communities should take away from this, I hope it's that we're not all individuals suffering from unique and disparate crises and in need of specific funding - disaster victims are a community with a shared interest in laying out a path to bigger policy changes that aren't about blunting an existing crisis but are about preventing it from having the kind of long tail 9/11 has had for those of us directly impacted by the air. So many crises linger because of our broken healthcare system, our obsession with means testing emergency programs to the extent that they exclude people who need access to them, our suspicion of government assistance. Having access to free and accessible healthcare would have changed everything about my experience as a 9/11 survivor, just as it would mean that victims of gun violence could access mental and physical care right away without concerns about cost, just as it would mean that COVID long-haulers could be sure they'd continue to receive treatment for as long as it takes to get better, just as it would mean that kids in fire zones, like where I live in CA, could be sure that care was available for the respiratory concerns they develop after a crisis. Disaster communities often wind up fighting each other for funding scraps. Obviously people need to take care of their communities by whatever means necessary when there's an emergency, but in the long-term it makes more sense to join up.
One thing that I found so impactful about this book is that it recalls the experience of being a child on 9/11 in very vivid, conversational terms.
That really resonated with me. I left Stuy for a school in Brooklyn so I had my own terrible outerborough experience that day. Still, knowing so many people who were really close to Ground Zero made it extra clear for me how much more removal I had from 9/11 than others. I think, outside of New York, people lost that perspective a bit. I remember going off to college a year later and being frustrated by feeling like people out there in New England made 9/11 "about them" even though I knew that, even as a New Yorker, it wasn't even really about me.
Lila chronicles that really well and describes how even though September 11th wasn't "the same emergency" for everyone even though "everybody on Earth believes they personally experienced 9/11." I found that to be really important perspective we see far too rarely in discussions of the attack.
All of that being said, and knowing all too well how much less impactful the disaster was for me than others, I have been thinking a lot about it as I do every year. My experience that say involved a stressful, smoke filled trip across Brooklyn. I was worried my mom, who often worked at the towers, was missing. When I got home, Stuy had been turned into a morgue. I saw footage of bodies going in and out of the school without that explanation. It terrified me that my friends there were dead until I was unable to get on the phone.
Everyone in the country - however far from ground zero - experienced some level of trauma that day. Lately, I have been thinking a lot about how simply unjust it was that children had to experience the trauma of that day and all of the fear and violence that flowed from it.
Lila's book makes this point with amazing clarity, emotion, and even sometimes, humor. With detailed research that outlines just how many policy failures contributed to children being exposed to toxic chemicals at Stuy, it is also essentially gripping reporting on a scandalous leadership failure.
I can't recommend this book enough and want to thank Lila for coming by today!
I will try to keep an eye on this thread in case anyone comes in with questions later on. We'd love to keep the conversation going!
Thank you so much for having me!
You referenced how the official WTC Health Program didn't accommodate enough people. I just watched the Netflix movie "Worth," which provides a real in-depth look at some of the processes that were put in place to compensate and care for victims after 9/11. One thing that's really clear in looking back at this, is the fact that, following something this horrible, it's really impossible to find perfect solutions.
Obviously, with violence on this kind of massive scale, it was going to be impossible to put everything right. Still, I think your story makes clear just how badly officials handed the air quality issues in Lower Manhattan and in the halls of Stuy. Based on your years of work on this, what do you think a just response from the government would have looked like?
To be honest, I think the first appropriate step would have been to remove us from the premises, and I understand why making such a drastic choice amid the chorus of "let's get NY back to work" sounded impossible. I think however, that we have an obligation to school children in particular to take extra precautions when an unprecedented situation that is likely to cause long-term harm arises. We don't offer health coverage as a right in the US context, so when we take unnecessary risks with our kids, we're not just subjecting them to long-term discomfort or pain, we're subjecting them to long-term expense and anxiety as well. Much to my frustration, the conversation at Stuyvesant the time got bogged down in whether it was feasible to change out the school's air filters - the Board of Ed argued it was not. That wasn't going to address the issue of the air outside, which we had to walk through to get from the subway to school and which blew in every time we opened a door. Oftentimes, and we're seeing this during COVID as well, adults charged with children's' safety make assumptions not based in fact but out of their own need for certainty and control. Our city government and school administration chose to project certainty that things were fine because it was hard to fight the chorus coming from the federal government insisting we get back to work, instead of questioning whether they actually were fine. If they'd asked themselves "is this actually fine," I think it would have been clear that it was not.
One other thing I'd note as well is that, once long-term health consequences seemed inevitable, the fact that we waited for 20 years for a permanently funded health and compensation program is absurd. I got involved in this issue because I could not afford an incredibly common asthma medication that I needed to stay alive. In no other wealthy nation would this have been an acute crisis the way it was for me.
I didn't see it this way at the time, but after reading your book, I was really struck by the way kids were essentially rushed back in to Ground Zero. In the book, you described the Stuy student body as "the canaries used to promote the revitalization of downtownManhattan after 9/11."
You described the school's air vents finally being cleaned in 2002 and that they were covered in black grime. How little was done to filter the air and, in hindsight, (particularly with what we've all learned about filration with COVID), what would it realistically have taken to ensure the Stuy kids had clean air.
Realistically the air downtown generally was not even marginally safe until February of 2002, so there would have been no way to return to Stuyvesant safely before that point. Every other school in the area pushed their return to the late winter/early spring, in part because of what was happening at Stuyvesant. That's the first thing. The second is that the city got opinions from experts and made promises about how they would handle building safety and didn't fulfill most them. They said they'd upgrade our air filtration, keep the windows closed, and clean the building fully. Instead we returned to a building whose vents were inches thick with WTC dust, a great debate ensued about whether it was safer to have the windows open or closed since CO2 readings in the building were too high but the air outside was incredibly toxic, and eventually we were told it would be too disruptive and dangerous to retrofit the air filtration system (once students were back parents learned it hadn't been done prior, as promised). If those precautions had been taken and students had returned in February, it wouldn't have been ideal, but it wouldn't have been nearly as dangerous. One final anecdote on this point - in the spring of 2002 a frustrated parent actually broke into the school theater and used a box cutter to tear out some of the carpeting and get it tested. They discovered it was filled with toxic dust and that summer the carpeting had to be replaced, but at no point prior did the Board of Education intend to do that themselves.
After reading your book, I sort of feel like EPA Administrator Christine Todd Whitman's initial assertion that the air was clean seems like an original sin that a lot of bad decisionmaking flowed from. Of course, given what we know now the lack of testing and proper precautions seems, at the very least, negligent. Do you think the EPA and City officials had any culpability here and would you like to see anything done to address that?
Not only do they have culpability, but I think the one bright spot here is that the federal government has essentially recognized that. The terrorist attacks themselves are not really why we wound up with the Zadroga Act. The EPA declaration that the air was safe to breath (the first was a verbal declaration from Sept 14th, Whitman put it int writing on Sept 18th) is why our health programs exist, and that's really thanks to the work of advocates and at a few of our NYC congress members, especially Rep. Nadler, who did to document that case and make the connections between her actions and local officials' choices early on. With that said, I think city officials also have culpability in my case because, as a public school student, they did have the power to interpret her declarations differently than they did. Additionally I want to be clear that Whitman's actions, while immoral, were stemming from pressure she was getting from her boss to get the economy up and running. As much as I believe her actions were criminal, I don't think she's the only culpable government official.
But aren't we repeating aspects of history right now? The rush to get children back to schools - to restore a semblance of normalcy - despite the fact that most schools have not made the necessary infrastructure changes and despite the fact that the pandemic is raging more strongly than ever
That's absolutely true and the parallels are something I started speaking out about last summer. The problem has, if anything, gotten worse.
Lila Nordstrom was a member of the class of 2002 at Stuyvesant High School. She was days into senior year on September 11th, 2001 and the school was. one of the closest to the World Trade Center.
After witnessing the attack and escaping Lower Manhattan that day, Lila became one of the leading advocates for her fellow classmates who experienced serious health problems as a result of long term exposure to the toxic air around ground zero. Nordstrom shares her stories from that day and her years of working to get care for other survivors in her excellent new book "Some Kids Left Behind."
I was actually a classmate of Lila's at Stuy, but I ended up switching schools and wasn't there that day. Among my friends, Lila is a bit of a hero and rockstar for her work on these issues and I am genuinely honored to have her here with us today.
To kick this off, your book recounts how the story of what happened to the kids at Stuy was drowned out a bit in everything else that happened after 9/11. This is really one of the undercovered tragedies of the day. For anyone not familiar with these issues, can you tell us a bit about just how toxic the air was and how many students and staffers at the school were impacted by it.
Absolutely. (And thanks so much for hosting this chat!) For those of your readers who are not local to New York, Stuyvesant sits about three blocks from the World Trade Center, and on 9/11 the southern facade was coated in WTC dust. The building was used as a command center during the initial rescue effort, but Students and staff returned less than a month later, on October 9th. The Board of Education promised to do a deep clean of the building, but once we returned parents realized the city's promises hadn't been fulfilled and the air surrounding the school was still toxic, in part because the debris barge they were carting WTC dust to for transport to the landfill was given special permission to dock right next to the school. The area was regularly recontaminated by the debris being dumped next to the school's air intake system and soon faculty and students began to experience things like nosebleeds, headaches, and chronic coughs.
At time we were told our health impacts would be only temporary but since then people have developed chronic issues stemming from these early symptoms in large numbers.
In the book, you describe what you call a "misinformation campaign" by former EPA Administrator Christine Todd Whitman, who almost immediately declared the air in the area safe. Meanwhile, months later the National Institute for Occupational Safety and Health released a report showing that over half the school staff had developed respiratory issues within a month.
Just how toxic was the air? What was done to filter it for students at the school and, over the subsequent years, how many people got sick?
As far as what was in the air - it was a mixture of things, some of which nobody thought to test for until months later. The main components of the WTC dust were pulverized concrete, fiberglass, jet fuel, etc. There were also chemicals like asbestos, lead, mercury, crystalline silica, cadmium, etc. Many of those are carcinogenic. The fires also burned continuously at the site until late January, however, which added another layer of toxicity to the air. The smoke and dust got into everything - our food, our clothes, our hair.
Though we don't have complete stats regarding who got sick and when, we do anecdotally know of at least 25-30 cancers with the Stuyvesant student body (keep in mind we're still all in our mid-30s) as well as at least three faculty deaths from cancer. We've lost a student to cancer as well, and this is surely an undercount because there's no complete data on the full scope of the affects on the Stuyvesant student body or lower Manhattan civilian population more broadly.
As for the number of people impacted, there are about 30,000 students, residents, and area workers enrolled in the WTC Health Program, but that's a massive undercount. One of the issues we face is that no agency or official body tracked our health in the aftermath of the attacks, and "survivors" (i.e. non-responders) do not have access to any of the federal health services unless they are symptomatic. This means that women and young people have a harder time getting into the program (almost all of the data on 9/11 health is pulled from male research cohorts) and therefore a harder time getting into the count.
So officials spent tens of trillions on the 'War on Terror' but didn't bother to test or adequately protect students, teachers, or first responders who were ground zero for the attack. If that doesn't show the core moral decay of this country...decades before the rise of Trumpism...I don't know what does.
We almost always rely on wartime framings when we think about large domestic crises, which means that, just like in wars, "civilians" become expendable while "heroes" sacrifice for the greater good. I've been thinking a lot about how to fight this framing during the COVID crisis since I don't want to see regular Americans, who believed the government and went out lived their lives, be scapegoated and left out of any resources that we set up for victims.
So much of what ails us is a lack of accountability at all levels of government, and throughout almost every institution. Would re-framing solve that basic problem? If so, what would the ideal framing look like?
You spent years working to get health benefits for your fellow classmates. In an environment where 9/11 and supporting New Yorkers was supposedly top of mind, why was this difficult?
One thing that I think is particularly important about your book is that you describe how the lessons you learned in this effort could apply to other disaster communities. You also provide resources for people interested in similar advocacy. What is your key takeaway about the needs of communities after disaster strikes and what needs to be done for the government to respond adequately?
One thing that always grates me is the extent to which people talk about the "unity" they felt after 9/11 without acknowledging that the same dynamics that politicized funding for NY after hurricane Sandy were present on 9/11 as well. Americans like to claim NY as a symbol, but don't like to claim New Yorkers as compatriots, so there was a massive effort to make this seem like a minor local concern and not a concern that actually was manifesting in every Congressional district (responders and survivors live in all but 1 CD I believe). This is, in part, why the conversation had to be dominated by responders, who had visible acts of heroism they could reference to blunt that resistance. The community didn't have anything like that - being a 9/11 survivor is just being a victim of bad policy. We're not heroes, we're just people, and in the American context, where even basic access to healthcare is tied to wealth and work, it's difficult to advocate for regular people. But I think to some extent Americans wanted to continue to exist in that feeling of unity, and this issue has been a persistent reminder that it never existed.
As far as what other communities should take away from this, I hope it's that we're not all individuals suffering from unique and disparate crises and in need of specific funding - disaster victims are a community with a shared interest in laying out a path to bigger policy changes that aren't about blunting an existing crisis but are about preventing it from having the kind of long tail 9/11 has had for those of us directly impacted by the air. So many crises linger because of our broken healthcare system, our obsession with means testing emergency programs to the extent that they exclude people who need access to them, our suspicion of government assistance. Having access to free and accessible healthcare would have changed everything about my experience as a 9/11 survivor, just as it would mean that victims of gun violence could access mental and physical care right away without concerns about cost, just as it would mean that COVID long-haulers could be sure they'd continue to receive treatment for as long as it takes to get better, just as it would mean that kids in fire zones, like where I live in CA, could be sure that care was available for the respiratory concerns they develop after a crisis. Disaster communities often wind up fighting each other for funding scraps. Obviously people need to take care of their communities by whatever means necessary when there's an emergency, but in the long-term it makes more sense to join up.