The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (No Series) (14 page)

However, the memo attached to the top of this record of decision spelled out a very different course of action; it informed city council members that, in fact, 858 East Ferry would not be remediated as planned. The toxic PCB and lead-laced soil would not be trucked out of the neighborhood. In fact, nothing was going to be done about the site for the foreseeable future: the state Superfund had just gone belly up, and there was simply no money left to remove the hazardous waste that permeated the 858 East Ferry property. Case closed.

Grant was dumbfounded by the senselessness of what she was reading. There was no money to remediate a toxic waste site that had been sitting there unbeknownst to residents for decades—and that the city had known about for the past three years? How could that be?

Several other facts concerned her. A line in the record of decision said that the New York State Department of Environmental Conservation had sent a bulletin to surrounding residents and business owners in February 1999 alerting them that a toxic waste site sat in their midst. Grant, who checked her mail carefully every day at her store, was certain she had never received a letter there. Nor had any letter ever arrived at the home she owned at 851 East Ferry, where her own daughter had been living for the last few years, practically smack on top of the 858 East Ferry site itself.

Over the next few days Betty Jean asked the dozens of customers who came in and out of Grant’s Variety Shop if they’d ever gotten a letter in the past about East Ferry being classified as a class-two toxic waste site. Had anyone heard a single word about the problem? Not one had. She asked the next Sunday at True Bethel Baptist Church—which sat directly across the street from 858 East Ferry—if any clergy or members had received such a memo in their mailboxes. No one at church had ever heard a word about it, either.

“No one ever got those letters,” Betty Jean says emphatically. “That is not the kind of thing you get and throw away. People have been wondering for fourteen years why everyone is getting so sick—and you think they’d get a letter telling them that they’re living next to all those toxic chemicals and just toss it in the trash can?”

But perhaps the thing that disturbed Grant the most about the memo she received as councilwoman was that it was already slated—by the city’s common council—to be “received and filed.” That, says Grant, was code for “fait accompli. It was designated as received and filed, because the city felt there was nothing more to be done; that we should consider ourselves informed and file the issue away, no discussion necessary.” But, she fumed, if no remediation was going to be done, how could they possibly be expected to accept that and file the papers away? What about the residents they had been elected to protect?

At the next full council meeting in May when the issue was raised and about to be checked off with a cursory nod with the understanding that it was out of their hands, a done deal, Betty Jean was ready. She held up her hand in a pause motion. “Not so fast,” she told her fellow councillors. “This is really serious. This is a class-two site, and I happen to think our neighbors are getting sick from this.”

Grant found support from the councilman who represented the East Ferry area where the site was located. While the majority of the council wanted to drop the issue, arguing that the Superfund had no money, so why press a hopeless case, the two council members persevered. They called the New York State Department of Environmental Conservation to suggest firmly that, at the very least, a fence be erected around the property with signs posted stating No Trespassing—Toxic Waste Site. The DEC responded by saying that since the city owned the lot, only the city had the legal right to erect a fence on it. The DEC added that they had written several letters to the city requesting that they erect a fence, but the city was not willing to do so. Calls made to the city were no more fruitful. The city claimed that since the state had already listed the site for cleanup, the city no longer bore any responsibility to remediate the area in any way—including putting up a fence to keep people off the property. It was now strictly the state’s responsibility to find the money to clean it up because it had investigated the contamination, determined a course of action, and placed the East Ferry site on the Superfund list. The city was not to blame, they said, for the fact that the Superfund went bankrupt. It quickly became evident to Grant that the city and the DEC were engaged in a dead-end blame game.

As for the letter that the DEC said it had sent out to the community to warn them about the site, it was unclear what had actually occurred—and it may always remain so. The DEC held that they had sent residents a bulletin informing them about the site and alerting them to a meeting to discuss it, but no one had come forward except for a single developer interested in building on the lot. Grant and others in the community were adamant that they had never received any such letter. Today, no one at the Albany, New York, office of the DEC, from which the East Ferry project was overseen, is willing to talk about what might have happened back then to result in so many residents remaining uninformed for so long.

Yet ironically, those missing letters and the lack of willingness on the part of the city to erect a simple fence would end up being the two catalysts that would galvanize residents to stand up and say they were mad as hell and weren’t going to take it anymore.

Grant was so infuriated that she wrote a letter to the local African-American community newspaper, the
Challenger,
and to the local
Buffalo Criterion,
letting residents know about the toxic waste site. In her letter she pointed out the possible correlation between autoimmune disease in the area and proximity to the East Ferry locale. She asked anyone in the area who had an autoimmune disease to give her a call. She went to the local True Bethel Baptist Church and asked the pastor there, the Reverend Darius G. Pridgen, to get the word out as well. Within a week, her list of who was afflicted with lupus and other autoimmune diseases within a few blocks of East Ferry grew to nineteen.

Rhonda Dixon Lee, up until that point, had been getting involved with helping those with lupus through an entirely different avenue. Having trained as a nurse, Lee felt that much more could be done to enhance local residents’ understanding of the disease so that those who were sick received proper treatment before irreversible tissue or organ damage occurred. She had been putting her efforts into assisting another local resident, Judith Anderson, a fifty-five-year-old African-American woman and founder of a local advocacy and support group, sponsored by the Lupus Alliance of America’s Western New York affiliate, called Sisters with Lupus. Anderson had established the group to help low-income African-American women who were suffering from the disease. Anderson knew all too well what these women were facing; she was a lupus sufferer herself.

Anderson, a petite woman whose demure demeanor belies her resolve for her mission, had also come of age in the East Ferry/ Delavan-Grider area of Buffalo. She had been ill since the age of nineteen. As a young child in the 1950s and 60s, Anderson had grown up about a mile from 858 East Ferry. Later, she lived on Carl Street, a third of a mile from the site, for three years. And between 1973 and 1987, her parents had owned and operated a family business called Anderson Lanes, a bowling alley with a bar and restaurant on Northland Avenue, which ran along the north side of the 858 East Ferry lot. For fourteen years, as a young wife and mother, Anderson had worked part-time at Anderson Lanes, which was located a little more than half a mile from the East Ferry site.

Anderson, like most of the women in the area, had spent long, difficult years unable to secure a medical diagnosis for her disease. By her early twenties, as a divorced single mother working for the local telephone company, she would set the alarm at four a.m. in order to get to work by nine. Her muscles and joints and connective tissue ached so much it took an hour to get in and out of the shower and another hour just to coax on her pants and shirt, with breaks in between to rest from the exertion.

Doctors, of whom Anderson saw dozens during office visits and intermittent hospital stays, were perpetually stumped. At times, she thought she must simply be insane. Not one doctor ever thought to test her for lupus. In 1989, her disability progressed to the point that when she did arrive at work, where her company enforced strict employee sick-day rules, coworkers would have to meet her at the door, put her in a rolling chair, and wheel her to her desk so she could start the day. She had to write with a felt tip pen, because she lacked the strength to bear down hard enough with a pencil or ballpoint to mark the page.

In 1990 she was finally tested for and diagnosed with lupus. By then she was forty-four years old and had lived with lupus, without the right treatment, for twenty-five years. All that time, she had somehow managed to avoid going into kidney failure. She was lucky to be alive, and she knew it.

After being diagnosed she would sometimes scan the obituaries in the local paper and read that another twenty-or thirty-year-old woman had died of lupus or of “unknown causes” that seemed clearly lupus-like in nature. It made her angry to think of women suffering as she had, without ever knowing why—without getting treatment and support or knowing that there were steps doctors could take to help them manage their disease. Judith Anderson wanted to change things for the women of Buffalo. In 1991 she began to volunteer for the Lupus Alliance of Western New York. What started as a part-time volunteer job soon turned into a full-time paying position as program director. By 1993 she had started the Sisters with Lupus support group in hopes of helping women in Buffalo get the diagnosis and medical therapy they so desperately needed.

In the spring of 2000, when Betty Jean alerted the community about the contamination at 858 East Ferry Street and shared her strong concern that the toxic waste site might be connected to higher than average rates of autoimmunity in the neighborhood, Rhonda and Judith were as alarmed as Betty Jean that the state and city were doing nothing. “We know that our dirty earth is related to disease,” Anderson says. “So is that what we’re going to leave for our children? Once you know of a problem, you need to fix it, so future generations won’t face the same ordeal. If you don’t do anything about it, that’s plain wrong.” The state and city weren’t willing to fix it? Then Betty Jean, Rhonda, Judith, and fellow citizens would make it happen.

A GATHERING STORM OF PROTEST

Where to start? Betty Jean sought help from a well-respected community activist and friend, Ausur Afrika, because of his diligence in assisting with work against discrimination and unfair conditions in the community. Afrika regularly held meetings for the area’s Black Chamber of Commerce, which he had helped to found, at a local bookstore, Harambe—its name an eastern African word referring to the tribal custom of all pulling together to help one another in times of need. Afrika was ready to help. He had seen Betty Jean’s letter in the newspaper before she came to him to share her suspicions about how the toxicity at 858 East Ferry had played a role in why so many people in the area had lupus.

After that letter appeared, a piece ran in the larger Buffalo paper, the
Buffalo News,
arguing that it was “unlikely” that there was any relationship between 858 East Ferry and the area’s lupus cluster. The counterargument being made, Afrika recalls, “pointed out that the direct cause of lupus was not known so therefore you couldn’t say that lead and PCBs could be part of what was triggering people’s disease.” But that seemed illogical to Afrika. “If you don’t know what is triggering lupus, how can you say that a particular source isn’t triggering it?” he asks.

In the summer of 2000 Betty Jean Grant, Ausur Afrika, Rhonda Dixon Lee, and several others came to a Black Chamber of Commerce meeting in what would be the first of many such gatherings. They agreed that they had to compel the city and state to take action. They continued to hold weekly meetings at Harambe over that summer, fall, and winter, naming themselves the Toxic Waste/ Lupus Coalition, with the specific goals of alerting residents to the hazardous site at 858 East Ferry as well as forcing the city and state to do something to better protect the people who lived in the neighborhood.

Around that time a new city council member, Antoine Thompson, was elected to represent the nearby East Ferry area. Thompson was concerned about what was happening in East Ferry and joined the cause wholeheartedly. Antoine Thompson, Ausur Afrika, and Betty Jean Grant, in conjunction with the rest of the Toxic Waste/ Lupus Coalition, kept meeting and sending suggestions to the Department of Environmental Conservation about how it could temporarily address the site for a small amount of money until more could be done.

“We came up with a million ideas as to what they might do that wouldn’t cost nearly as much money,” recalls Afrika. “We suggested they put a tarplike ground cover over the area so the lead ash wouldn’t drift off the site. We asked again for a fence and that they put up a sign stating that the site was a hazardous waste site.” But again no action was taken. The Toxic Waste/Lupus Coalition feared that the DEC and the city wanted to sweep the issue away, which simply goaded them on more. On Sundays they went to the public housing development next to the property and flooded the area with flyers. They put flyers in doorways and on car windshields, warning people not to go into the field at 858 East Ferry and telling them why. They asked Pastor Pridgen at True Bethel to alert his congregation to the site’s toxicity.

Betty Jean, who as councilwoman had a weekly radio show, informed listeners that there was a toxic waste site in their area and that the coalition was concerned that if someone lived in the area that person might be more likely to have lupus. She asked them to call in. “Every week we heard from more and more who were afflicted,” she says.