For most of us the technological encounter is happening every moment of our lives. We live in what Marshall McLuhan calls "technological environment,"1 and our very sense of existence is shaped by the continuous interaction. Think of it. Cars. Traffic lights. Free-ways. Television. Telephones. Airports. Electric lights. Microwave. Librium. BHT. PVC. Chlordane. Polyester. Power lines. Pollution. Only recently have we begun to understand the effects of everyday technologies on our lives and health.
Most people made sick by a health-threatening technology are not aware at the time of exposure that the technology is dangerous. Because we do not exert choice over which technologies prevail over our lives or how, when the technological encounter is detrimental to health, it can occur in an atmosphere of ignorance. Because we are surrounded by a culture that assumes the benefits, or at the very least, the necessity of technological progress, the event can occur in an atmosphere of innocence.
In 1949, June Casey was a sophomore at Whitman College in Washington State. At nineteen, she was bright, happy to be studying music, and eager to experience life. That December, nearby Hanford Nuclear Reservation, the nation's primary production center for weapons-grade plutonium, made an intentional, secret release of 5,500 curies of radioactive iodine-thousands of times more than the 15 curies released during the Three Mile Island nuclear accident. That Christmas, June went home to visit her parents in Oregon, and her "crowning glory," her head of thick, wavy brown hair, fell out and never grew back. She developed a case of hypothyroidism her doctor described as "the most extreme case he had ever tested in his career." Despite chronic fatigue, she taught music, married, and did volunteer work for her local symphony and art museum. Later in life, June endured a miscarriage and a stillbirth. She never understood what had caused these disabilities.
Then in 1986, thirty-seven years after the event that changed her life, she stumbled across a small newspaper article revealing for the first time that a release of radiation had occurred at Hanford the very December her hair fell out and thyroid problems began. According to a 1950 monitoring report made public by the Department of Energy in 1986, the release was a "planned experiment."2
Similarly, in 1979 when Susan Hernandez went to work for the GTE Lenkurt electronics plant in Albuquerque, New Mexico, she was not told that the various varnishes, lamination compounds, glues, and cleaning fluids used on the assembly line would be detrimental to her health. Instead, for eight and a half years, Susan felt proud to be "working and making an important contribution to society." During this time she was exposed to dimethylamine, diethylene-triamine, diglycidyl ether of bisphenol A, lencast, and 4,4'-ispropylidenediphenol, epichlorohydrin resin. There were no face masks or protective clothing to shield her or her coworkers from the fumes and particles, and Susan worked at GTE for five years before the company even told workers to wear safety glasses. She only realized her work environment was dangerous when it became clear that, one by one, many of her fellow workers were falling sick with illnesses from allergies and dizziness to cancer and leukemia.
The crucial question that arises is one of knowledge. Who knows that a technology is dangerous? When do they know? How does a new technology get launched into public use? How complete are studies that research its potential impact? How influential? In some cases, as with the Dalkon Shield, the Pinto car, and leaking gasoline tanks, at the beginning no one really knows how safe or dangerous they are-not the inventors or the manufacturers, not the government or the consumers. No one has thought ahead to the possibility that they might have ill effects in the future, and sufficient testing and analysis have not been pursued. In cases like these, while neither purveyor nor user knows the dangers of a technology at first, eventually through unfortunate experience someone finds out. The discovery often pits defensive purveyor, who may not want to admit responsibility or invest in changing the technology, against wounded consumer, who may seek compensation for suffering or demand that the offending technology be banned.
In other cases, decision makers on the highest rungs of government, scientific, or corporate hierarchies do understand the dangers, but they determine that the "risk" to individual lives is worth the "benefit" to society, their own resume's, or their bank accounts. Seeing no advantage in confessing knowledge of the dangers, they often surround their technologies with secrecy. They tell neither workers nor public about potential problems, and as a result, people use dangerous technologies with no knowledge of risk.
The fact that asbestos could cause lung disease and death was known in the United States by 1918, yet manufacturers persisted in employing workers in unsafe settings, avoiding responsibility through workers' compensation laws and legal corporate strategies. In the 1950s, Heather Maurer worked with her father cutting asbestos pipe for the family plumbing business. Her father died of multiple cancers, and her mother has pleural fibrosis today. "Believe me!" she asserts. "My father wouldn't have had his family work with the stuff if he knew it was killing us!"
Ultimately, we do not know the health effects of modern technologies because their developers and purveyors do not care to know. Our technologies are not created and chosen in an open, caring, or democratic manner, and we have not demanded that they be so. Rather their existence in the human community becomes, for both irresponsible developer and innocent consumer, an unchosen fate.
The discovery of the connection between a survivor's ill health and a technological event, then, occurs in an atmosphere of ignorance and innocence. Among the people interviewed in the study for this book, all but two expressed complete naivete' about the dangers of the technology they used or were exposed to. The listing on the labels of NutraSweet products informed Therese Khalsa that aspartame was merely "a sweetener," and Andy Hawkinson's officers encouraged the troops to enjoy their time on the island of Eniwetok.
The two people who felt endangered at all were only partially informed. They had enough knowledge to merit concern, but not enough to cause them to seek an alternative. George Milne was stationed on Bikini Island in 1946 to observe Operation Crossroads, atomic tests Able and Baker. As an amateur scientist with degrees in physics and chemistry, he had read as much as he could find about atomic energy, and he knew that the full health effects of radiation were unknown. Once on the islands, though, despite the fact that as beach master he was in a position of relative authority, George was never told how much exposure the troops received and there were no dosimeters to measure contamination. His uninformed ambivalence was reflected in island military policy. The lagoon where the men spent their leisure hours had two areas cordoned off: one marked "Uncontaminated," presumably safe for swimming and play; the other, just a rope's diameter away, marked "Contaminated."
Gay Ducey also felt caution. She knew that the herbicide she and her husband were applying to the church lawn in East Oakland was poisonous. She called the manufacturer to inquire about safety precautions, and just as they were advised, they showered thoroughly after applying the weed killer, put their clothes in plastic bags, and disposed of them at the city dump. There had been no warning about breathing the fumes, living on the grounds after application--or using the product while pregnant.
In an atmosphere fraught with ignorance and innocence about technological hazards, how do people discover the link between a technological event and their health problems? The answer depends, in part, upon the type of technology used and its health effects. Are effects immediate and obvious? Do they evolve through the years? Or do they appear, full-blown and unexpectedly, twenty years later? Making the connection between the event and illness also depends upon how much access one has to relevant information. Does one have books, reports, magazines, or knowledgeable people within reach? Are other people concerned and demanding to know? Or is one alone? Making the connection can also depend upon one's personality. Does one question prevailing cultural knowledge? Does one tend toward problem solving or intuitive discovery?
Despite the terrible pain of knowledge, it is agreed that the uncertainty of not knowing is worse. As noted by researchers K. Lang and G. Lang, "The worst kind of threat... [is] the dread of the unknown."4 The most universal response of technology survivors is the desire to know.
For some people, the discovery is obvious and immediate. Diane Carter had a Dalkon Shield inserted in 1973 when she was living in Denver, Colorado. In 1975 when she first heard that the Shield could be dangerous, her doctor insisted she was doing fine and should leave it in place. Three years later, when she fell in weakness on the floor of her apartment, excruciating pain emanating from her womb, she knew the Shield was at fault.
For other people, discovery is a long and tedious process of piecing together experience, perceptions, and information. Without help from external sources, it becomes a personal journey. Betsy Berning is a survivor of both the Dalkon Shield and the overuse of antibiotics. She received the Shield in Cincinnati, Ohio, in 1971. Episodes of severe abdominal pain began immediately. For Betsy the process of discovery was one of learning to question the dictates of the medical profession and trust her own perceptions. One doctor repeatedly insisted that she was "imagining" the pain. He prescribed tranquilizers for six months to calm her nerves, but when he finally removed the Shield in 1975, to his surprise it had calcified and embedded in the wall of her uterus. She had severe pelvic inflammatory disease (PID). Seven years of antibiotics followed, a treatment that caused Betsy to get chronic vaginitis and the immunologic disorder systemic candidiasis. Two years later, her immune system severely weakened and, cervix ravaged by constant infection, she developed cervical cancer.
Although Betsy had acknowledged that the IUD was responsible for the PID in 1975, it wasn't until 1982 that she clearly saw the link between her total physical deterioration and medical technology. "I figured it out--rather it hit me," she explains, "when I stopped believing the doctors and started believing myself. And then I felt as if it had just happened!" Betsy's perception of the suddenness of the event is not uncommon. It took years for Maria Carriaga and her neighbors to manifest the health effects of the formaldehyde poisoning from the particle board factory, yet the moment they learned the cause, time compressed in their minds. They felt the contamination had just occurred. According to researchers Andrew Baum, Raymond Fleming, and Jerome Singer, because disastrous technological events are not anticipated, many people experience them as sudden, even when they have developed over time.5
Meryl Tavich discovered the link between migraine headaches and the birth control pills she took for ten years by pursuing her own medical research. She noted that her headaches began in 1965 when she first took the Pill. She observed their clear monthly pattern and located studies on the relationship between migraines and hormonal disruption. The various doctors she saw did not help her make the discovery. In fact, none of them knew or bothered to research the medical effects of oral contraceptives, and eventually Meryl came to know more about the subject than they did. She stopped taking the Pill in 1975, but the headaches continue to strike every month.
For some technology survivors, discovery of the connection between exposure and damage to health comes from external sources. Many people learn about it through the media. Atomic veteran Andy Hawkinson read in People magazine about the deaths of two military men who, like himself, had been at Eniwetok in the 1950s, and fellow veteran Gilberto Quintana, who was contaminated while on shore leave at Nagasaki, received a newsletter from the Disabled American Veterans describing the health effects of radiation from the bombings in 3apan. Bookstore owner Pat Cody learned she was a DES mother in 1971 when she picked up the San Francisco Chronkle and saw an article entitled "Drug Passes Rare Cancer to Daughters."
Gay Ducey describes her discovery in poignant detail: "We didn't know why our son was born with birth defects or why Patrick and I had these chronic health problems. We occasionally tried to figure it out, but we didn't know. Then at Christmas in 1978, eight years after exposure, we were home visiting my family in Texas. Patrick picked up an article in The New Yorker by Thomas White-side. He'd written a book about Agent Orange called Withering Rain. As part of his continuing research on pesticide contamination, Whiteside had gone to a town in Italy called Seveso, which had been victimized by a cloud of Agent Orange--essentially dioxin. He returned to research and monitor the effects two years after the event. It was Christmas Eve, and my husband was reading late. He came upstairs at about two in the morning and awakened me, and he said, 'This is it. This is what we have.' The health effects to the people and animals in Seveso were just like ours. I knew in an instant that he was right."
For some people, the connection between technology and health is made for them. A psychopharmacologist told Carl Porter about environmental illness when he learned about it from a medical resident. Perry Styles learned she was a DES daughter when a gynecologist detected abnormal cells growing in her vagina, a condition indicative of daughters of women for whom DES was prescribed, and indeed, Perry's mother later confirmed she had taken the drug during pregnancy.
Because the process of discovery can be haphazard and personal, rather than systematized and public, the question of accuracy arises. How can a person be certain that the technology used is responsible for negative health effects? The issue is complicated by the fact that we are all constantly being exposed to dangerous technologies. I mentioned that I am a survivor of medical technologies: artificial hormones and the Dalkon Shield. My health problems stem directly and historically from these two encounters, but various drugs have also been prescribed for me, including broad-spectrum antibiotics, at one point continually for five months, and the "morning-after" pill, which contains diethylstilbestrol. For the first twenty years of my life, my diet was spiked with pesticides and preservatives. I have lived downwind of nuclear testing and near high-voltage power lines, and I have breathed the pollutants of automobile and factory. I have slept on foam mattresses, gazed into television and computer screens, worn clothes made of petrochemicals, and had mercury amalgam fillings put in my teeth. I have lived in Cleveland, Ohio, where the air and water are toxic from industrial pollution; Fort Myers Beach, Florida, where trucks openly sprayed pesticides into the trees; San Francisco, a polluted urban area and one of the nation's centers of electromagnetic radiation emission; and New Mexico, where the nuclear industry spreads radiation via leakage wastes, uranium tailings, smokestack emissions, and unaccounted-for releases and accidents.
Despite the constant barrage of technological contamination we all endure, there are specific episodes that affect us more than others and can be identified. In a world of increasing numbers of health-threatening technologies, the personal experience of technology-induced illness arises as one of the most accurate routes to discovery. Few other routes exist. There is no holistic view of technology's health consequences and little systemic assistance from social agencies. Responsibility for discovery lies with the survivor, not with the purveyor of the offending technology or with society at large.
Unfortunately, extreme emphasis on scientific inquiry and technological development has robbed us of the validity of personal experience and subjective truth. Such modes are not "objective" or "rational" enough, and yet at this point they provide the most compelling voice for the sad predicament of modern technological society. Indeed, proof beyond a doubt that a particular technology has caused a person's illness is not always possible, but the fact remains: Many people become ill after exposure to a technology-and they know it. Gay and Patrick Ducey know it. Therese Khalsa knows it. Betsy Berning knows it.
Response to the discovery that a technological encounter has caused deteriorating health is, of course, entirely subjective. The experience of becoming aware can be compared to the emotional process psychiatrist Elisabeth Kijbler-Ross describes when people find out they have a terminal illness. In fact, many of technology's survivors do have terminal illnesses, or at the least, face incomparable loss.
Denial can be the first response. After Pat Cody learned that the DES that had been prescribed for her in 1955 could cause cancer in her daughter Martha, she applied, in her own words, "denial and repression." She tried to continue with her life as if no discovery had been made, comforting herself in moments of unwanted remembrance with the thought that the particular type of cancer described was supposed to be "rare." Eventually, though, the difficult news crept back into consciousness.
Pat's spiral of denial and awareness is common. Psychiatrist Mardi Horowitz points out the positive role that denial can play for people facing untoward events.6 After the initial surprise, denial blocks registration of the new fact: "The cancer DES causes is rare." This numbing is then disturbed by the intrusion of the new information and feelings about it: "I did take DES. What could happen?" Then denial returns: "My daughter will be okay." The denial offers time to rest and assimilate. Soon the new information intrudes again:
"The rare cancer they talk about was rare only before millions of women took DES." And the cycle repeats itself until the person, little by little, is able to face the full reality. This is a process of mastering loss. As Pat Cody says, "With something like that, it is so important, you can't bury it forever."
For some people, though, denial is the first and final response. They cannot allow the news to creep back in at all. In these cases, denial becomes not part of a process of acceptance, but an effective shield for life. Andy Hawkinson describes sitting at the bedside of fellow atomic veterans dying of cancer, leukemia, and heart disease, telling them their diseases were caused by radiation exposure, and being met with walls of silence and strings of dirty words.
Shock is also a common response to discovery. This can be the experience of the person who does indeed take in the news and believe it. It resembles "disaster syndrome,"7 the complete lack of response initially experienced by survivors of tornadoes, fires, and other catastrophic events. For technology survivors, it is the sense of being stunned, dazed, and psychically removed from what has taken place.
June Casey describes the moment she read about the Hanford radiation release as "a knife in my heart," followed by shock. Love Canal resident Lois Gibbs describes her reaction as "stunned disbelief...the reporters talked about chemical seepage at Ninety-seventh Street," she reports, "then Ninety-ninth Street, and all of a sudden I realized that this was my side of the highway! This was my son's school! And I was just walking around in a daze. I didn't even talk about it with my husband. The whole thing was too much to comprehend. The reporters listed all these chemicals and their effects. There was benzene, which can cause central nervous system disorders, and lindane, which can cause miscarriages. And dioxin was there, and dioxin causes immune suppression. I was in shock!"
Then there is anger. "When we discovered the connection between dioxin and our son's disabilities," says Gay Ducey, "I was consumed, absolutely consumed, with the most killing, most cleansing rage I can possibly describe." There is anger at oneself, anger at the technology involved, anger at the institutions responsible for the technology, anger at the universe-as Saf-T-Coil IUD user Wendy Grace describes, "at society, at God, at everything and everyon~it wasn't any one thing."
Jesus Rives worked as a tool mechanic at Mare Island Naval Shipyard in Vallejo, California, from 1945 to 1979. As a result of a gall bladder operation in 1978, Sus underwent a complete medical checkup, including a new X ray to detect asbestos-caused diseases. He found out he had asbestosis. "I got very, very angry," he reports. "I got in my car and just took a long ride to get my thoughts together. Everybody has the same feeling, you know. I didn't think anything like that would ever happen to me. We see accidents. We don't worry about them. It's always someone else, but it hits home when all of a sudden-boom-they got you! I did nuclear work at the shipyard, especially in the latter years, and I was trained to guard myself from radiation. But nobody said one word about the asbestos. We were breathing it and the whole nine yards. It really got me mad to think that I have it. The question that railed in my mind was: What is asbestos? I got something I don't understand, but I understand it's fatal. I was angry at everybody."
In the case of a community threatened by a pervasive technology, anger can turn into mass hysteria. Lois Gibbs describes one of the early reactions of her Love Canal neighbors when they learned about the toxic wastes beneath their homes and school. "We drove up Colvin," she tells, "then down Ninety-ninth. We went down Ninety-seventh, but I didn't see anything. Then at Wheatfield the road was blocked. Hundreds of people were in the street screaming, yelling, and talking. . . and burning papers in a bucket. I had never seen anything like it. They were like a mob."8
And there is fear. When Jane Woolf found out that the well water she had been drinking at her home in Michigan was contaminated by a gasoline leak across the highway, she also learned that the benzene in the gas could cause leukemia. "I was extremely worried," she says. "I had an overwhelming fear of death gnawing at me. 3ust thoughts running through my mind all the time. Who will I make my will out to? I wonder if I'll ever have any kids? I wonder if I'll ever have a family life? It was the idea that I could die from the exposure."
Another response to discovering the connection between health and a technological event can be relief. As June Casey describes, "It was the answer to the mystery of my whole life!" Although the news about his medical prospects was bad, Carl Porter cried, "Thank God!" At long last there was an explanation-and something concrete he could work on. To Gay Ducey the discovery was "terrible and wonderful" at once.
Gay also tells of the moment of discovery as a realization "of total violation, of technological rape." When Therese Khalsa learned about the aspartame in her diet foods, she felt "taken, abused, stupid, and dumb." Anika Jans remembers learning that the Dalkon Shield had caused, up to the point of discovery, two years of chronic fatigue and unrelenting fever. "I saw myself a vulnerable target for a cadre of omnipotent men wielding larger-than-life darts," she says, "and I knew that they had wounded me. I was no longer supported by normal reality. The earth fell away from my feet. I had become a victim."
1. Marshall McLuhan, Understanding Media New York: Signet Books,
1964), p. ix.
2. Karen Dorn Steele, "In 1949 Hanford Allowed Radioactive Iodine Into Open Air," Spokesman (March 6, 1986).
3. Paul Brodeur, Outrageous Misconduct The Asbestos Industry on Trial (New York: Pantheon, 1985), p.14.
4. K. Lang and 0. Lang, Collective Dynamics (New York: Crowell, 1961),
5. Andrew Baum, Raymond Fleming, and Jerome Singer, "Coping with Victimization by Technological Disaster," Journal ofSocial Issues, Vol.39, No.2 (1983), pp. 117-138.
6. Mardi Horowitz, Stress Response Syndromes (New York: Jason Aronson,
7. Anthony Wallace, Tornado in Worcester: An Exploratory Study oflndividual and Community Behavior in an Extreme Situation, Committee on Disaster Studies, Disaster Study No.3 (Washington, D.C.: National Academy of Sciences/National Research Council, Publication No.392, 1956).