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Counting Heads Is Not Enough To Address Environmental Justice



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Alonzo Spencer CHEJ's BOD Chair



Today in the Washington Post was a front page news story that talks about how the large environmental organizations are not diverse enough.

This is the same story written many times beginning in the late 1980’s. It sparked a national conversation and action that lead to the first Environmental Justice Summit in 1991 and in 1994 Bill Clinton signed an executive order Environmental Justice Act. The story talked about counting heads (non-white) on staff, in decision making positions and members of the Board. That story is not new and I believe is way too narrow of a focus.

The large environmental organizations have brought more diversity to their staff and their board, then was the case in 1990, but they are still a far cry from being diverse. However, I think just counting people of color within an organization is not the only or even the best measurement of their efforts to address the multitude of issues within the context of environmental justice.

One point that the Washington Post article raised, I think is at the heart of the issues. “Today, minority communities — black, Latino and Native American — along with low-income white neighborhoods still bear a disproportionate burden of the nation’s toxic pollution. They are in the shadows of petrochemical plants and coal-fired power plants, the nation’s greatest source of stationary pollution, according to the Congressional Research Service.” A diverse group of staff and board members will not change anything unless the large green organizations decide to makes a radical shift in their missions, goals and resource allocation.

It is a fact, detailed in a NCRP report that, environmental funders mainly support large, professionalized environmental organizations instead of the grassroots community-based groups that are most heavily impacted by environmental harms. Organizations with annual budgets greater than $5 million make up only 2% of all environmental groups, yet receive more than 50% of all environmental grants and donations. This makes it even more imperative that large organizations need to not only change the ethnic makeup of staff and board but also move significant resources to reflect their commitment to the field. The report makes the simple but profound argument that the current environmental funding strategy is not working and that, without targeting philanthropy at communities most impacted by environmental harms, the movement will continue to fail.

In movements throughout history, the core of leadership came from a nucleus of directly impacted or oppressed communities while also engaging a much broader range of justice-seeking supporters. In other words, successful movements for social change — anti-slavery, women’s suffrage, labor rights, and civil rights — have always been inspired, energized, and led by those most directly affected. Yet these are the very groups within the environmental movement that are starved for funds.

Robert Garcia said in the Washington Post article, “The values of the mainstream environmental movement don’t focus on the needs of people. They focus on clean air, water and climate.” I agree with Robert Garcia, who founded and provides counsel for the City Project in Los Angeles and would add why are they not investing in communities on the front lines?

Alonzo Spencer, CHEJ’s Board Chairman, lives with a hazardous waste incinerator that has been out of compliance more often than in compliance. His community was designated an Environmental Justice Community by the US EPA in the 1990’s. Other than CHEJ, his neighborhood has no skilled national group helping them. Where are the lobbyists that are needed to change the laws, not at the national level but at the state level?

In Ohio if you are out of compliance (not obeying the law) but you have a plan or schedule to come into compliance, you are considered in compliance. I know this because that is what the appeals court ruled when CHEJ took the case as far up as we could. So, in reality the facility never really needs to be in compliance they just need to keep putting together plans that say they will someday comply with the law. Yes, it is a fence line problem but it is also a climate issue given they release more than permitted of chemicals that impact climate and discharges contaminate the Ohio River and other sources of water.

Alonzo’s community has the highest rate of cancer in the state. Their elementary school was closed, which was a necessary action because the top of the stack of the incinerator was almost level to the school windows due to it being built below the bluff where the school stood. The local taxpayers had to pay to move the children to another school. A low-wealth county, spending money they don’t have to keep their children safe.

Or where are the resources to assist communities in Corpus Christi, TX? Along refinery row, all the industries say they are in compliance, and maybe they are, but when you have miles of refineries collectively the air is not breathable. Who lives there? Suzie Canales, another member of CHEJ’s board who tells the story about how the city charter designated section of the city specifically for African Americans and Latino’s to live. If you were Latino or African American family you could not purchase property outside of the cities designated area for your ethnic group. Therefore, homes were purchased near the refineries because they were not permitted to buy other properties. Now the properties are not only unsalable but a health risk to families who live there.

The conversation about environmental organizations and environmental justice really needs to be about resources and assistance to the front line communities rather than head counting. Someday, maybe all of the Green Groups would be diverse, but that alone will not translate into playing an active role in bringing real aide and justice to front line communities. There needs to be diversity, resources and a core commitment to solutions and necessary actions that come from the people who are impacted.

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Adverse Health – Real Cause – Poof Deflected

Two studies, from completely different states were recently released concluding the same thing. Both said there was no cause for alarm. Their findings . . . every elevated health abnormality was more likely due to something other than the chemicals in the environment. Poof the words on the paper report deflected the problems. Yet that is not what the studies honestly found.

Enough already . . . real people, with real families need honest answers. However, when there is a question or a real statistical finding of an abnormality the health authorities, as to not upset the corporate polluters or their friends in government, assumption that it’s more likely be a meteor, like recently seen in Russia, than due to chemical exposures in the air or soil. O.K. maybe not the meteor but the answers are just as foolish. The cause for high disease is almost never related to the obvious, 500 pound toxic elephant in the room, nor do the recommendations falls on the side of precaution and cleaning up the environment.

In North Birmingham a recent study around soil and air contamination suggested that the levels of chemicals would not be harmful to health unless you had pica children. Pica children are young and frequently because of age put hands and other things into their mouths. O.K. but the soils samples came from an elementary school grounds, just the place you would find pica children. Just wash their hands and teach them not to place their fingers in the mouth. Poof deflected. It’s the children’s fault and parents for not training the children well enough to keep their hands away from their mouths.

The second study came from New York. The NY State Department of Health undertook a study in Tonawanda where air contamination from multiple industries have been an on-going problem. They found high rates of cancer and birth defects. The study found cases of bladder cancer in the area were 24 percent higher for men and 81 percent higher for woman compared to the rest of New York State, excluding New York City. And women living in the neighborhood had 93 percent more leukemia cases than the rest of the state. Lastly, they found 30 percent more birth defects than the rest of New York State.

The analyses of birth outcomes in the study area compared to birth outcomes in NYS showed some elevations that were relatively smaller than the cancer elevations. Preterm births were elevated in the overall study area. Total heart defects as a group were also elevated, but major heart defects were not elevated.

Then poof the results went away! How? Doctors are better at reporting in the region then in other regions of the state. The report said, “the health investigators compared the birth outcomes in the study area to birth outcomes in Erie and Niagara Counties, the elevations declined substantially. This is consistent with other evidence suggesting this area has more complete reporting than elsewhere in the state.” Poof deflected.

Cancer results the health department said, “factors include smoking, family history, and occupational exposures, as well as others. In the general population, smoking is the most important risk factor for both lung and bladder cancer. We do not know the individual medical and exposure histories for the people included in this study.” Deflected again. So because the victims themselves could have cause the problem and we don’t know if they did the default is, these are sad people who are likely making themselves sick.

If only families living in contaminated areas could create that same magic and poof make the toxic, cancer causing and birth disrupting chemicals go away. Or pretend that contamination in school property will somehow not hurt young children even though the entire property, building and play area is intended for small children.

I walk with these parents, sit in their living rooms and listen as they try and struggle with the pain of their sick loved one and the disappointment they have for those who are supposed to protect and defend American families from criminals and their poisons.

It is hard to respond when parents, women ask over and over again, “why?” It’s not right when can’t smoke in buildings and restaurants (a very good law) but industries can just violate the law, poison people and government covers up the problems just as the tobacco industry did for decades. I never thought I’d see the day when the American people through our tax dollars hired scientists that mirror those that our elected leaders despised-tobacco scientists.

The message to all those fighting for justice and hoping that science may provide some evidence, it won’t – not because it can’t but because our scientists lack the back bone. Our struggles, although should be won on science alone, are clearly political fights and these two studies are just more proof.

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Backyard Talk

35 Years of Progress Since Love Canal

This year marks a very significant date – the 35th anniversary of the Love Canal crisis. It is hard to believe it has been that long and in recognizing this fact of life, I realize that entire generations have been born since who may know little or nothing about Love Canal and how the environmental health and justice movement began.

History is important and we need to find ways to tell the story so that we don’t repeat our mistakes and we can reap the benefits of lessons learned through oral histories. One key lesson from Love Canal is that a blue collar community with next to no resources was able to win its fight for justice and open the eyes of the nation and the world to the serious problems of environmental chemicals and their effects on public health.

Thanks to Mark Kitchell, an Oscar nominated and well known filmmaker (Berkeley in the Sixties), there’s now a compelling and thought provoking film that can be used as a tool in educating younger generations about Love Canal and the history of the environmental movement and engaging them and re-engaging the rest of us in the fight for a healthy planet. What is exciting about A Fierce Green Fire is that this film, which includes a prominent segment on Love Canal, demonstrates in real footage that change happens when people get involved.

“The main difference between my film and a lot of other environmental films is that instead of it being focused on the issues, ours is focused on the movement and activism,” said Mark Kitchell in an interview. “I feel that telling stories of activists, taking up the battle and fighting, is the best way to explicate the issues. And that was my main handle on the environmental subject, doing the movement story,” adds Kitchell. The film, narrated by such notables as Robert Redford, Meryl Streep and Ashley Judd among others, received great reviews at Sundance.

As CHEJ moves forward this coming year, we are partnering with groups across the country who would like to show the film in a theater setting, at small group gatherings or house events and have a conversation about how change happens and what they might do differently in their efforts to win on environmental and environmental health and justice issues. Partnering with groups, we hope to also bring media attention to their local issues and raise funds for their group and CHEJ. It’s a plan that’s hard to pass up.

If your group is interested in hosting a local viewing, please contact CHEJ. Together we can inspire people to take action to protect health and our planet.

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Backyard Talk

What You Might Have Missed Over (and since) the Holidays

The past few months have been a real doozy for the vinyl chemical industry.

While you were probably indulging in a bit too much holiday egg nog or prancing underneath the mistletoe, the vinyl chemical industry was in hot water from New Jersey to Delaware to California.

“These individuals can never know how much and for how long they were exposed to vinyl chloride, a highly toxic gas known to cause fatal cancer and liver damage,” the chairman stated.

The biggest news was no doubt the train cars carrying vinyl chloride heading to OxyVinyls that derailed in Paulsboro, NJ. The accident was nothing short of a major environmental and occupational health disaster. One of the trains released 23,000 gallons of vinyl chloride, which formed a cloud of toxic gas that drifted into homes and businesses throughout the community.  More than 70 people were hospitalized after the vinyl chloride release. Air monitoring found very high levels of this chemical in the community. Hundreds of families were then forced to shelter in place and eventually evacuate their homes for days.   Since then, it’s been revealed that first responders were exposed to high levels of vinyl chloride, as it’s shown up in their bodies.  Thanks in part by the fine folks over at OxyVinyls (more on Oxy below).  You can read more about the train disaster in this op-ed I authored for the NJ Star Ledger (the largest paper in NJ!).

The same week that Oxy’s vinyl chloride was poisoning the air of Paulsboro, vinyl manufacturer Formosa Plastics was fined by the state of Delaware more than $70,000 for various air pollution violations at their plant in Delaware City.  It’s not the first time Formosa has been in hot water for violating the law.

In California the US Customs and Border Protection seized 35,000 toxic rubber (vinyl) duckies, which were in violation of the federal Consumer Product Safety Improvement Act for containing elevated levels of phthalates.  According to the feds:

“they arrived from China dressed as Santa, Snowman, Gingerbread man, Reindeer and Penguin, all 35,712, but their cute holiday flair did not deflect the scrutiny of U.S. Customs and Border Protection (CBP) officers and import specialists, at the Los Angeles/Long Beach seaport.”

And that was just in December!

What will 2013 bring for the vinyl industry?

The past few weeks have shown 2013 will not be much easier for the vinyl chemical industry.

Down in Georgia, a recycling company has reduced their stockpile of PVC, after more than 400 firefighters had to battle a fire at the plant.

“It’s been almost six months since Chattooga County, Ga., was hit by its largest fire in three decades, when more than 400 firefighters battled a blaze at a plastics recycling plant in Berryton, Ga.  One thing has changed since then: The North Georgia Textile Supply Co. has whittled down its stockpile of a potentially toxic type of plastic: polyvinyl chloride, or PVC. When PVC burns and firefighters spray water on it, a cloud of chlorine gas can result. Since the fire, North Georgia Textile Supply Co. has reduced the amount of PVC at the recycling facility in the old Berryton yarn mill three miles southwest of Summerville, Ga.”

EPA published the latest toxic release inventory (TRI) data, and their latest findings show that 3 of the top 5 dioxin polluters in the country were vinyl companies: OxyVinyls, Dow Chemical, and Westlakes Vinyl (with Oxy and Dow #1 and #2).

New scientific studies published continue to underscore what we know – vinyl chemicals are toxic to our health.  Studies have found dioxin delays the onset of puberty in boys, phthalates in the bodies of ants, and organotins (which are used to “stabilize” vinyl) linked to obesity, even in the grandchildren of those exposed.  Nick Kristof wrote a fantastic column about this new study in last week’s New York Times.

Finally, WFPL radio ran a heartbreaking and extremely powerful story about the families of vinyl workers who died from liver cancer, after being exposed to high levels of vinyl chloride.  This here says it all:

“But it’s too late for the workers who have already died from angiosarcoma or are suffering from liver disease. Janet Crecelius Johnson wonders why B.F. Goodrich couldn’t have erred on the side of caution. Her husband Revis was diagnosed with cancer a year to the day after he retired. He had worked night shifts for nearly 40 years, and was looking forward to spending more time with his family.

“Every time there’s a wedding, every time there’s a baby, you just think, ‘I wish he could be here.’””

Any other major stories I might have missed?

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Backyard Talk

Today’s Rachel Carson

Today’s Rachel Carson is a woman I know, admire and love, Dr. Beverly Paigen. I was reminded of how important Dr. Paigen is when asked to present her with an award from the Maine Environmental Health Strategies Center.

When I began to think about what I would say about Dr. Paigen I realized how groundbreaking her research was back in 1978 at Love Canal. How when she presented her theories and her research findings around the Love Canal chemicals and adverse health problems she was dismissed, ridiculed, and harassed by those who wanted to silence her, just like Rachel Carson.

Beverly conducted health studies and showed that 56% of the children were born with birth defects. She suggested that this rate may occur in the next generation as well. She found there were more girls than boys born at Love Canal. All of these finding and others were what we are calling today endocrine disrupting chemical effects. In 1978 endocrine disrupting chemicals were not on the radar screen of most environmental health scientists other than in wildlife, as Rachel’s work pointed out.

Beverly demonstrated how the chemicals had likely moved out of the dumpsite the Love Canal and into the homes that surrounded the site. Again she was dismissed. Today, there is a name for this movement of chemicals called vapor intrusion and there is even an EPA approved technology to remove the chemicals from homes called vapor intrusion mitigation technologies.

Beverly like Rachel Carson suffered for her commitment to speak truth to power. She worked for the State of New York Department of Health as a researcher at Roswell Cancer Institute. Her boss was the Health Commissioner who opposed acknowledging anything was wrong at Love Canal. The result of her speaking up . . . of her speaking out . . . was her staff at her research laboratory was cut, as was her budget, space and she was asked to keep a written record of everything she did.

Later she was called in for a personal IRS audit. As the auditor began to open his file a news article about Dr. Paigen fell out. Beverly called foul play and asked the state of New York for an apology for harassing her. The State did publicly apologize.

When the NYS Health Commissioner refused to sign the agreement for millions of dollars in research funds that would come to Roswell and the state from the federal government, she took her research money and left the state. But she didn’t stop her work with the Love Canal families. Beverly continued her research with Lynn Goldman at Oakland’s Children’s Hospital and published the first study on growth and maturation of Love Canal children exposed to environmental chemicals. This study like the others link slow growth of long bones in children with environmental chemical exposures.

All of the studies that Dr. Paigen did at Love Canal were vindicated. NYS Department of health confirmed the birth defect rate of 56% and found that Love Canal children were giving birth to children with the same rate of birth defects. Her studies on abnormal sex ratio were also confirmed as was so many of her other findings.

The State of New York has never apologized for their harassment and unfair treatment of Dr. Paigen. But, Beverly isn’t really looking for an apology she just wants the public health scientists to conduct scientific studies that are not politically manipulated, that answers as best as science can, the questions of environmental exposures and health. People, American families need honest answers in order to make decisions on their lives. Government health scientists need to be left alone to conduct scientific research regardless of the outcome, not be told what to do and say.

I wanted to take this opportunity to publicly say thank you Beverly for your courage, passion and most importantly for providing the groundbreaking scientific findings to the world regardless of the consequences. You are today’s Rachel Carson.

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Backyard Talk

Train Derailment in NJ: More of the Same – No Cause for Alarm



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Paulsboro train derailment.



How many times have we heard the same refrain from government leaders and scientists involved in community wide exposures such as the recent train derailment in Paulsboro, NJ that released 23,000 gallons of vinyl chloride into the air? “There’s no cause for alarm, we have everything under control.”

If only this were true. Instead, many of the hundreds of people in the 27 block area that was evacuated remain frustrated by the lack of answers to their questions about health effects and accountability. This frustration is driven by how government leaders and scientists evaluate health risks and by the many uncertainties about what is known about the short and long term health effects of being exposed to vinyl chloride or other chemicals. Scientists can estimate risks and give their opinions, but we simply don’t know what’s going to happen to the health of the people who were exposed to vinyl chloride in the aftermath of this accident. Yet this is exactly what people want to know – what’s going to happen to their health or to the health of their children as a result of this accident?

Here’s what we do know. We know that vinyl chloride is a human carcinogen and that it damages the liver and central nervous system; that more than 200 families within a half mile of the accident site were evacuated; that the Coast Guard and other authorities acted swiftly in evacuating the homes immediately surrounding the site of the accident; that the train pulling 84 cars derailed on a bridge over Mantua Creek; that seven rail cars derailed; 4 contained vinyl chloride; one ethanol; three fell into the creek; and one ruptured releasing vinyl chloride into the air (see photo).  We also know that 10 days later most people are back in their homes with assurances from the local authorities that everything is fine.

This is not surprising because it’s the practical thing to do. But what was the scientific basis for this decision? Air samples taken by EPA on December 8th and 9th from throughout the surrounding neighborhood found vinyl chloride in every sample taken. Eight of the nine samples exceeded the EPA’s one-in-a million cancer risk value (EPA’s trigger level for action). Yet people are back in their homes. EPA’s interpretation of this data is that is that the results are within the agency’s “acceptable” risk range, which varies by a factor of 1,000. This is a ridiculously large risk range that has no meaning in protecting public health.

So the stalemate is set up between government leaders and scientists telling people that everything is fine and a frustrated community that has no answers. Given this dynamic, it’s not surprising that 54 residents filed suit this week against Conrail and CSX for damages. What they want is medical screening for early detection of life threatening medical conditions linked to vinyl chloride. This is actually a reasonable response to the many uncertainties that exist in the scientific understanding of what will happen to the health of the people exposed to toxic chemicals such as vinyl chloride.

Had the government leaders and scientists in Paulsboro recognized the scientific uncertainties and more honestly acknowledged how little is known about chemical exposures and health outcomes, there may have been a more satisfying resolution. A resolution that might have included practical steps forward such as medical screening for early detection of medical conditions linked to vinyl chloride. Testing that should be paid for by the companies responsible for the accident and who own the chemicals.

As long as decision makers continue to protect the companies responsible for area-wide chemical exposures such as what occurred in Paulsboro, this scenario will continue to play out as it has since the days of Love Canal more than 30 years ago. Isn’t it time we publicly acknowledge what we don’t know about exposures to toxic chemicals and stop deluding ourselves that using risk estimates that define “acceptable” exposures is the best way to manage toxic chemicals? There is no acceptable exposure if you‘re the one being exposed.

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If People Were Treated like Corporate Profits – Maybe We’d Be Safer

Today families, school children, hundreds of residents were evacuated again from the area around the train derailment in Philadelphia, Pennsylvania which sent a cloud of vinyl chloride into the air early Friday. This event is yet another example of how our federal and state governmental agencies fail to respond in a health protective way. They failed to gather enough data to clearly, scientifically and honestly say to families it is safe to go home. They shot from the hip—said it was safe and they were wrong.

Imagine on Friday all of the schools were in lock down – meaning no one could leave or even open the doors and the homes and businesses around the accident were evacuated. Other than 48 homes closest to the accident, people were told they could go home. Sunday people went to church, children played outdoors in the unseasonably warm weekend riding bikes, climbing on swings at the playground and more. People were assured the risk had been eliminated and they are safe.

Today . . . Monday test results revealed that the area is not safe and schools were closed and homes and business were once again evacuated. This, it’s dangerous—not dangerous seesaw announcements, by trusted health authorities happens time and time again in every state. We’ll never know what that unnecessary vinyl chloride exposure to local small children and families did to their health. Vinyl chloride is a very dangerous chemical that causes cancer and nervous system damage. After 31 years of watching innocent families being victimized by corporation and then victimized by their own government authorities that are suppose to protect them, I am ready to scream. Why is it that chemical exposures are responded to with such casual concerns? Why can’t or won’t the authorities take precautionary steps when it comes to the health of innocent Americans?

I know when I ask this question of government health authorities they said because, the problem is contained. Moreover, we know who was exposed and who wasn’t and unlike infectious disease or contaminated food products it won’t reach beyond the physical area.

What is shocking is that somehow; those in charge of our health and environmental protection think this casual approach “because it’s contained” is acceptable. I don’t. There is no real urgency to accidents, spills or on-going pollution because it’s contained and what the authorities don’t say is it impacts on the responsible corporations’ bottom line. What about the American families’ bottom-line? They want protection, warnings, sound scientifically based information. They shouldn’t have to pay with their wallets and health.

Odd as it might seem, I sometimes wish people were treated like corporations profits. If that was the case PA families would not have been told to return home when it wasn’t safe.

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Backyard Talk

Petrochemical America: Picturing Cancer Alley

Last month, when news outlets around the country covered our press event revealing toxic phthalates in children’s Back To School supplies, we were proud of the work we’d done. Tens of thousands of Americans had been educated about how to avoid real risks to their children’s health.

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Abandoned trailer, Mississippi River, Near Dow Chemical Plant, Plaquemine, LA, 1998. From Petrochemical America, photographs by Richard Misrach, Ecological Atlas by Kate Orff (Aperture 2012).

But as so often happens, absent from the coverage were the stories of the people who live near the chemical plants that produce the vinyl, whose land, air, and water has been harmed for decades by some of the most profitable companies in the world.

This month, CHEJ is proud to help present those stories in a way they have never been presented before.

Petrochemical America: Picturing Cancer Alley is a groundbreaking new collaboration by photographer Richard Misrach and landscape architect Kate Orff, debuting at Aperture Gallery and Bookstore in NYC tonight. Through haunting photographs and innovative composite images employing ecological and sociological data, gathered over the course of 14 years on the banks of the Mississippi river in Louisiana, the book and gallery exhibition provide a moving and deeply informed portrait of the American “sacrifice zones” upon which our use of plastics, oil, and gas depends. Read more about Plaquemine, LA, pictured above.


For those in New York City, we invite you to attend two free, upcoming gallery events:

  • Tuesday, Sept. 25th, at 6:30pm: A panel discussion with our own Mike Schade, joined by Ms. Orff and Wilma Subra of the Louisiana Environmental Action Network.
  • Tuesday, Oct. 2nd, at 6:30 pm: A talk and screening of the excellent and darkly comic film Blue Vinyl, with author David Rosner and landscape designer Gena Wirth.

Both events are free and include access to the exhibit. They will take place at Aperture Gallery and Bookstore, 547 West 27th Street, New York, NY.



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Human mismanagement is turning lush cypress trees into ghostly poles, jeopardizing Louisiana’s bayou ecologies, local economies, and cultures. Requiem for a Bayou. From Petrochemical America, photographs by Richard Misrach, Ecological Atlas by Kate Orff (Aperture 2012).


For our supporters around the country, we encourage you to explore the content of the book and consider purchasing a copy. Aperture Foundation is nonprofit, and book sales help sustain its exhibitions, books, and magazine.

As we continue to advocate in New York City to get PVC out of new construction, renovation, and school supplies in our public schools, projects like Petrochemical America help us and our supporters keep in mind the full scale of what’s at stake in shifting to a safer, more sane, and more just material economy.

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Backyard Talk

Identifying Disease Clusters – What Comes Next?

It’s hard to say how many disease clusters have been identified. The website of the National Disease Cluster Alliance (NDCA) which held a national conference last week has a map that identifies 73 clusters. Several people attending the meeting pointed out that their cluster was not on the map and there are no doubt many others not on the map. While identifying clusters is an important step, knowing how to respond and what steps to take once a disease cluster (even a suspected disease cluster) has been identified is, perhaps, more important. This and other questions about disease clusters were discussed at a National Disease Cluster Conference held in Washington, DC last week by the NDCA.

It was clear from several presentations that no guidelines exist for what action steps a government agency should take once a disease cluster has been identified. This is a big problem, especially since most health agencies typically close their investigation once a cluster has been identified, concluding that they could not determine the cause of the cluster. This is not the time to walk away from a community that is struggling to determine not just whether a disease cluster exists, but what‘s causing it as well.

There are plenty of examples of communities where a disease cluster was identified. There is the cleft palate cluster in Dickson, TN, increase cancers in Clyde, OH, and childhood cancers in Toms River, NJ, Sierra Vista, AZ and Fallon, NV to name a few (see NDCA map). There are few examples, however, of agencies being able to identify the cause of the cluster. Woburn, MA is the exception as the state health department was able to identify contaminated drinking water wells as the cause of a childhood leukemia cluster.

No doubt determining the cause of a disease cluster is a difficult question to answer. It took the MA state health department over 10 years to conclude that the contaminated drinking water wells were the cause of the cluster in Woburn. But because it’s difficult is not reason enough for public health agencies to walk away. This is unconscionable and irresponsible. Public health agencies need to come up with an action plan for how to follow-up the finding of a cluster. Part of the response needs to include an environmental investigation into what may be causing the cluster. In addition, the community would likely benefit from the distribution of educational materials about the disease in question and the methods used to investigate clusters and their causes. Whatever follow-up occurs, the government needs to include from the very beginning of the process the affected community as part of the planning group directing the investigation.

One example highlighted at the conference was the work of Dr. Paul Sheppard from the University of Arizona who conducted an environmental investigation following the identification a childhood leukemia cluster in Fallon, NV. Between 1997 and 2004, 17 children living in Fallon were identified with leukemia, three of them died. For three years Sheppard studied heavy metals in air, especially tungsten which had been identified as increased in Fallon. Sheppard used tree leaves and tree rings to measure tungsten and found a high concentration of tungsten in the center of Fallon, the home to a tungsten refinery and a tungsten plant since the 1960s.

Although Sheppard was unable to prove that exposure to tungsten caused the increase in leukemia, his work has clearly related the two. His work provides a model for how to follow-up finding a disease cluster. Investigating environmental exposures in a community with a cluster makes perfect sense. Now we need to convince the public health agencies that they need to include this step in as part of their responsibilities. For more about the conference, see www.clusteralliance.org.

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Backyard Talk

Love Canal Déjávu – Ground Hog Day?

I couldn’t believe what I was hearing and seeing when I clicked on a link that connected me with a news story about Love Canal by the local ABC TV station in Buffalo. There in front of a camera was a young woman who reminded me of myself 35 years ago. Christen Morris talked about chemicals that have become visible, about trees dying, pets with cancer and growths, and many people who are sick.

I can remember saying those same words, making that same case in 1978 to EPA and the NYS Department of Environmental Conservation. Wow. At the same time as Ms Morris and others were speaking out about problems in the neighborhood, classmates who attended the 93rd Street School were sharing notes. 93rd Street School was located in the northern part of the community, and also demolished due to contamination. Former students, at a class reunion, began exchanging notes about how sick they were finding common concerns and disease. They believe their health related problems might be linked to exposure to Love Canal chemicals during their elementary school years.

Former student Laura Racine said, “I went to the reunion and decided to seek out all the kids that went to the 93rd Street School with and see if they were having health issues as well. And nine out of ten of them were having health issues.”

It is so hard to watch these news stories. It has never made any sense to me or other former residents of the area, why the state and federal government insisted on repopulating the northern part of the evacuation area or why they refused to follow the young children from both 99th and 93rd Street Schools. These are innocent people who were children and whose parents were assured that no long term health problems were likely. The public was assured that Love Canal was cleaned up, when actually the 20,000 tons of chemicals are still there, still in the center of the dump. Only a clay cap and trench system to capture anything that might move out horizontally was put in place. There’s absolutely no science that supports the government’s theory that the chemicals will stay put. All landfills leak and Love Canal is no exception. In fact, the Love Canal dump has no bottom. So, it leaks chemicals out the bottom every time the Niagara River levels drops . . . like in August for example.

The families living around the dump are not to blame. So many people want to – blame the victims. People were assured by every imaginable government agency that everything is fine. The most frequently used phrase to people who inquired was, “Love Canal is the most tested neighborhood in the country.” Of course that doesn’t mean its safe but those words along with assurance of safety people became convinced.

It will be painful to watch the new effort unfold as families with sickness and questions struggle to get those answers. I plan on helping where I can. To see recent news story click here.