In August 1941, Mina Boyce, a 21-year-old widow and an alcoholic, handed her baby over to state social workers, setting little Freddie Boyce on the miserable road to the "Water E. Fernald School for the Feebleminded."
Over the next seven years, Freddie lived in seven foster homes and then was locked behind the iron gates of Fernald, an institution for people with mental retardation. There he would stay until his "parole" 11 years later.
The injustice, similar to the fate of thousands of children unlucky enough to fall into government custody before 1960, might have been forgotten, but Boyce never accepted the idea that he was "feebleminded." Decades later, when documents revealed that he and other children had been subjected to unethical radiation experiments while at Fernald, Boyce seized his chance: He rounded up his friends from Fernald, filed a lawsuit, and exposed a dark chapter of American history.
"We didn't commit any crimes. We were just 7-year-old orphans," declared the traveling carnival barker at a packed Washington D.C. hearing in 1994. Though he was testifying about being fed radioactive oatmeal, Boyce was really talking about being locked away for years without education, without love, without hope.
Now, Frederick Boyce is dying. But he is going out as the voice of a lost generation rather than the lost boy he once was.
From his sickbed in the Colonial Rehabilitation and Nursing Center in Weymouth, he talks on the phone to an executive at Steven Spielberg's DreamWorks who tells him the screenplay for a proposed movie about his life is finished and fabulous. And, though Boyce is thin and weak from colon cancer, he promises another caller to speak at an upcoming State House meeting "if I'm around."
"Something like this is kind of surreal," said Boyce, 65, who always assumed he would be a "spectator" in life rather than a mover and a shaker. "How can this little kid from a state institution be able to do so much?"
But people who know Boyce say he possesses a rare resilience that has allowed him to rise above a nightmare that left many others bitter, ashamed, or demoralized. Boyce, they said, never blamed himself for his predicament. He forgave his keepers at Fernald, even the ones who administered arbitrary beatings and humiliations. And, even as he prepares to die, he retains his almost dizzying optimism, stocking up on prizes for his carnival concession booth just in case he gets well enough to go back on the road as he has for the last 43 years.
"I don't know anyone who has as many friends as Freddie," said Abra Figueroa, Boyce's ex-wife and close friend, who came from Oklahoma to visit him last weekend.
Boyce, who loves to discuss Stephen Hawking's theories on black holes and keeps a poetry anthology at his bedside, is not, and never was, mentally retarded. Dr. Norman Frost, a pediatrician, once wrote in The New England Journal of Medicine that the main difference between Boyce and "normal" people is that "he is better looking and more charming." With his soothing, low voice and sharp Portuguese features, he always had a gift for luring people to the carnival midway.
But Boyce was born to a mother who lost custody of 13 children to the state in an era when psychologists used a now-discredited IQ test to determine whether a child should be institutionalized. When Freddie got his first test, he had never been to school, and he became anxious as strangers asked him to define words such as "timid" and "tame." He scored 65 on a test where 100 was considered normal, making him "feebleminded" in the terminology of the time.
Freddie found hundreds of other boys and girls much like him among the 2,000-plus residents at Fernald — mostly "problem" children who were being warehoused at the 19th-century brick campus along with people with genuine mental retardation. All of them suffered in an environment that offered little education, required menial labor such as picking beans and mopping bathroom floors, and permitted outsiders to visit mainly on "company Sundays."
Freddie couldn't understand why he was being held — "There ain't nothing wrong with me," he would tell attendants — to no avail. When, in 1960, the Fernald staff finally agreed with Boyce's claim that he was safe to leave the school, he couldn't read or write — and no one apologized.
Boyce worked hard to build a life, hiring a tutor to visit him weekly and gradually saving money from his carnival work to buy a house in Norwell. He made his peace with his mother, coming to see her as a victim of her own difficult childhood, and with the staff at Fernald, which he saw as part of a system beyond their control. But his 1987 marriage to Figueroa lasted less than two years, and he came to think of himself as someone who had difficulty forming intimate relationships.
"I accepted I have a life that's always going to have pieces missing," Boyce told journalist Michael D'Antonio, author of "The State Boys Rebellion," a book about those who grew up at the Fernald School.
Finally, in 1993, a librarian at Fernald discovered an old ledger book that described the way Boyce and other children in the 1950s had been seduced into taking part in medical experiments with promises of Red Sox tickets, Christmas parties, and other tokens. The children in the so-called "Fernald Science Club" had been fed oatmeal laced with slightly radioactive milk as part of a nutrition study for Quaker Oats.
When The Globe published a story on the experiments, it made international news and triggered a congressional inquiry.
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Boyce quickly became the face of the scandal, aggressively calling reporters to tell his story and organizing former "Fernald Science Club" members to sue Quaker Oats, the researchers who did the experiments, and the state and federal agencies that were supposed to protect children. Although the radiation levels were probably too low to do much harm — and Boyce doesn't blame the experiments for his cancer — the group received a $3 million settlement for violations of their rights, which worked out to $50,000 to $65,000 for each of the several dozen people.
Perhaps more important to Boyce, the controversy gave him a platform. He remembers feeling "weak-kneed" as he entered the ballroom of a Washington, D.C., hotel to testify about the Fernald experiments before a federal panel investigating the abuse of human research subjects. But Boyce made the most of his chance, telling panelists, "The idea of getting consent for experiments under these conditions was not only cruel but hypocritical. They bribed us by offering us special privileges, knowing that we had so little that we would do practically anything for attention."
In the years that followed, Boyce received a personal apology for the radiation experiments from President Bill Clinton, while D'Antonio's 2004 book made clear that the radiation experiments were part of a larger tableau of suffering. Boyce did interviews about his past with everyone from People Magazine to "60 Minutes," where staffers called him "one-take Freddie" for his ability to speak from the heart in punchy soundbites.
Steven Spielberg was so impressed by Boyce's story that his production company, DreamWorks, bought the film rights to "The State Boys Rebellion" and commissioned Jose Riviera, award-winning screenwriter of the movie "The Motorcycle Diaries," to produce a script. Meredith Bagby, the former DreamWorks executive who spearheaded the project until this month, said the movie is not a certainty yet, but the screenplay is "amazing."
"It's an instant story like 'Cuckoo's Nest' or 'Cider House Rules' " by John Irving, said Bagby. "It's about kids, and no matter how bad it was, they always had this child-like optimism."
Boyce, who can no longer eat much solid food and is receiving treatment only for pain, knows he won't be around if and when the movie gets made, but he doesn't seem to mind. He only hopes that other "Fernald Science Club" members carry on the effort to get a formal apology for their mistreatment from the state of Massachusetts.
"I feel like I made my life," he said. And he's proud that a Hollywood movie may be his epitaph. "I want to see the story come out as strong as possible so that these institutions can't do what they did to us again."
source: http://www.boston.com/news/globe/health_science/articles/2006/05/01/the_voice_of_a_lost_generation?mode=PF 5may2006
Today he'd get tutors, counseling, maybe speech therapy. In 1949, 7-year-old Freddie Boyce got locked away.
From the early 1900s well into the 1960s, Freddie and thousands of other so-called "feebleminded" children and adults were enrolled each year at the Walter E. Fernald State School outside Boston. Though some of them would today be considered mentally impaired, many others were simply abused or neglected children in state foster care.
Over the years, hundreds of "State Boys" were sent to Fernald on the basis of faulty IQ tests and a medical establishment that accorded these tests extraordinary power. The boys grew increasingly angry as contact with outside volunteers and exposure to television showed them how much like "normal" boys they were, and how little society recognized their desperate plight.
Complaints to school psychologists about the physical, sexual, and emotional battery they endured at the hands of Fernald staff seemed to go unheard. And so finally, the boys started to rebel. As teenagers, inspired by news accounts of the American civil rights movement, they repeatedly ran away, engaged in petty crime, and, in 1957, they rioted.
But perhaps the State Boys' greatest rebellion came years after they were released from the institution, undereducated and ill-prepared for adult life. In 1995, dozens of former state wards revisited a painful chapter of their pasts to speak publicly about the abuse they endured at Fernald, and to bring a successful lawsuit against a state that had used them as unwitting subjects in experiments involving radioactive oatmeal.
Pulitzer Prize-winner Michael D'Antonio tells much of this extraordinary story of the State Boys through the eyes of Freddie Boyce. Underfed and badly neglected as a young child, Freddie had never even used a crayon before an intelligence test damned him, a boy with a mild speech impediment, to 12 years of institutional care.
Throughout his life at Fernald, numerous teachers and psychologists questioned Freddie's diagnosis as a "moron" and recommended his placement with a foster or adoptive family. But after a runaway attempt during which he moved in with a friend and held down a full-time house-painting job for several weeks, Freddie was returned to the institution by police.
Exasperated, the 16-year-old boy asked a Fernald psychiatrist, "If you had a kid, and even if that kid were retarded, for real, would you put him in this place?"
The doctor sputtered, went silent, then demanded of an attendant, "What's this kid doing here?" Then he turned to Freddie. "I wouldn't put my child here," he said. "You're right. I wouldn't do it."
Nevertheless, it wasn't until Freddie was 19 that a panel of doctors, social workers, and psychologists reviewed his case and decided he could be paroled to the outside world. There he succeeded at a series of counter jobs at Boston drugstores and diners, and finally found one for which his ability to size people up, honed on the irascible Fernald staff, made him a perfect fit: as a carnival barker.
But for all his success on the road, and the courage he showed in speaking out and reuniting his fellow State Boys to sue for damages, Fred Boyce continues to feel that his years at Fernald robbed him of the chance to learn how to be part of a loving family.
"I accepted I have a life that's always going to have pieces missing," he told D'Antonio. "But I can't help but think that, without Fernald, I would have made a much bigger contribution."
D'Antonio's remarkable ability to reconstruct scenes through the eyes of young Freddie and his friends and his restrained and luminous writing would alone make this book worth reading. But his story also reaches back to show how the State Boys' abuse resulted from early 20th-century reformers' benevolent attempt to offer special training to the mentally retarded. D'Antonio's analysis of the dark, unintended consequences makes this not only a fascinating read, but a necessary one for anyone interested in how terrible harm can sometimes be born of a sincere desire to do good.
source: http://www.powells.com/review/2004_06_14.html 5may2006
A single word was stamped in bold, black ink across the top of the file. To the Commonwealth of Massachusetts, Freddie Boyce was just another one of the "morons" warehoused at the Walter E. Fernald State School for the Feeble-minded, located just outside Boston in Waltham, Mass.
Freddie arrived at Fernald in 1949 after the last of his foster parents died. He never knew his father and barely knew his mother. After taking a primitive version of an IQ test, he was determined to be mentally insufficient and labeled a moron – just one of many scientific terms given to kids with slight mental capacities. He was given a school uniform and put to work. It didn't matter that Freddie would be considered normal by today's standards. He was simply poor, uneducated and had nowhere else to go. So they locked him away.
"We thought for a long time that we belonged there, that we were not part of the species," Boyce said 50 years later, recalling his days at Fernald in an interview with "60 Minutes." "We thought that we were some kind of people that weren't supposed to be born."
It would take nearly 50 years for him to be able to cope with the torment and anguish he endured at Fernald. He was physically abused by the attendants, mentally abused by administrators and even unwittingly fed radioactive oatmeal as part of a bogus science experiment conducted by researchers at the Massachusetts Institute of Technology. There were plenty of nightmarish stories, but it was being labeled a moron that left the biggest scar – a single word stamped on the heart and soul of an utterly normal 7-year-old orphan.
21st Century Challenge
Freddie Boyce and the other children at Fernald didn't know it, but they were victims of America's eugenic era, locked away by bureaucrats to prevent the "genetically inferior" from reproducing and adding to America's collective gene pool. Long-running, but almost forgotten, the practice of eugenics was perhaps our nation's darkest hour. According to Edwin Black, author of War Against the Weak (Four Walls Eight Windows, 2003), during the first half of the 20th century, American corporate philanthropy joined with prestigious academic universities to create the pseudoscience of eugenics. The goal: to create a superior, genetically engineered race. Now more than a half-century later, the uniqueness of human dignity is once again at stake.
Although the eugenic era has faded, Boyce's story is more important today than ever before. Recent strides in biotechnology raise the hope for technological progress, but they also raise fundamental moral questions about our humanity. As radiologists employ cutting-edge genetic research to detect, diagnose and treat a wide variety of diseases, suddenly we're faced with a perilous scenario. What if this genetic information was somehow used to discriminate the "genetically inferior" like the children of Fernald?
"Can't happen? Think again," says Nigel Cameron, PhD, president of the Institute on Biotechnology and the Human Future, a bioethics think tank at Chicago-Kent College of Law. "Many people, including insurers, employers and schools, have incentives to discriminate based on genetic makeup. Employers and insurers could reject healthy applicants just because their genes may show they have a statistically higher chance of getting cancer. And schools could simply choose to admit only those whose genes suggest they'll have a better chance to succeed."
In fact, genetic discrimination is already happening on a smaller scale, he adds, citing a case of an Iowa railway worker who filed a workers' compensation claim. When he was asked for a blood sample, the company sent the tube out for a secret genetic screening. If the results showed a predisposition for carpal tunnel, they would have a defense against the worker's claims that the job left him debilitated. They would then have no obligation to pay their employee because the worker's genes caused the injuries, not the job. The worker eventually found out and filed suit against the company for invading his privacy.
Cameron says that genetic discrimination, like other forms of discrimination, is difficult to identify and measure. "So as the volume of genetic information grows, it is important for individuals and society to decide not only who should be allowed access to genetic information, but how that information may be used," he says.
And that's just the tip of the ethics iceberg. As if the bioethical decisions facing radiology aren't complicated enough, they're just the first phase of what he calls the moral challenge of the 21st century. As genetic technology proliferates and combines with nanotechnology, information technology and a whole host of other "ologies," many experts believe that this convergence of hi-tech sciences will eventually be used to bioengineer a "superior" human species or several species, known as techno sapiens or posthumans.
It sounds far-fetched, Cameron admits, but the technologies needed to bioengineer a new species are already being developed in research labs across the country.
So what exactly is a posthuman? "In the posthuman, there are no essential differences, or absolute demarcations, between bodily existence and computer simulation, cybernetic mechanism and biological organism, robot technology and human goals," writes Katherine Hayles, PhD, professor of English at the University of California, Los Angeles in her book How We Became Posthuman (University of Chicago, 1999). She concludes her book with a clear description of what's at stake. "Humans can either go gently into that good night, joining the dinosaurs as a species that once ruled the earth but is now obsolete, or hang on for a while longer by becoming machines themselves. In either case the age of the human is drawing to a close."
The question remains: Which direction will we go?
"There are groups of very smart philosophers and researchers who truly believe that blending artificial intelligence with bioengineered human intelligence is the logical and irrevocable future of mankind," says Cameron. "Whether they call it techno sapiens, transhumanists or posthumans, the idea they are putting forth is that the convergence of biotechnology, nanotechnology and information technology (IT) should be used to enhance humans, to make them better, to the point that the very essence of the human condition is drastically changed forever."
We often scoff at the sci-fi notion of techno humans or half-robot, half-man superhumans, but what was once science fiction is now science fact, says Douglas Mulhall, author of the book Our Molecular Future (Prometheus Books, 2002). The truth, he says, is that we are not that far away from an IT-enhanced, bioengineered superhuman. "In some ways, we have already begun the transition. Prosthetics have been transplanted into nervous systems so amputees can move robotic arms and legs. Computers have been implanted into neural pathways, via retinal implants that allow blind people to see," says Mulhall. "It's just a matter of connecting those chips via a Bluetooth wireless connection and man and machine are one."
Nick Bostrom, PhD, professor of philosophy at Oxford University in the United Kingdom and founder of the non-profit think tank the World Transhumanist Foundation, echoes a similar thought. "It's only a matter of time before technology changes the essence of being human," he says. Instead of trying to suppress the technology, he suggests embracing the movement to help guide its direction in an ethical manner, "to ensure the transformation beyond human is performed in a meaningful way."
So just how far away are these technologies? To Bostrom, it's clear that the ability to change many fundamental parameters of the human condition will be developed within a few decades. However, one look around the exhibit hall at the scientific assembly of the Radiological Society of North America (RSNA) and the immediate impression is that these changes may be even sooner.
The first steps of this futuristic world were on display last week at RSNA 2004. In GE Healthcare's Technology Pavilion, visitors were treated to exhibits of what healthcare will look like in the year 2015. The research and development on display included new, targeted diagnostics, as well as information technologies solutions and imaging equipment that will enable physicians to predict, diagnose, inform and treat disease earlier than ever before.
Armed with a new generation of diagnostics, researchers will be able to identify what they call "genetic fingerprints" of specific diseases that predict the course of how those diseases are likely to develop and progress. Gene-based technologies being developed also will help physicians understand a patient's individual genetic profile to predict their likelihood of developing certain diseases and enable them to carry out proactive monitoring and overall healthcare management.
Advanced diagnostic imaging systems and contrast agents will produce high resolution structural and functional images of living tissue, enabling physicians to identify disease and its specific location. For example, GE Healthcare is developing novel molecular agents that image the process of angiogenesis, the growth of new blood vessels. By honing in on this process, they hope to help physicians more accurately and less invasively diagnose and treat a variety of diseases such as cancer, cardiovascular disease and wound healing.
GE is also working to understand disease at the molecular level to ascertain a patient's ability to metabolize specific drugs, enabling physicians to tailor treatment to an individual patient. The growing understanding of disease will yield more targeted and more effective therapies to rule out ineffective drugs. From side effects to outcomes, each patient's individual response to treatment will be more accurately predicted.
"We are leveraging our knowledge of molecular biology, electrical engineering, nanotechnology and digitization to drive advances in medical diagnostics," says Sir William Castell, CEO of GE Healthcare and vice chairman of GE. "These advances will shift today's hospital-centric model of healthcare based on finding and treating disease late, to a more patient-centric model in which we hope to predict and prevent disease."
It's hard to argue with technology when it clearly has the potential to revolutionize healthcare. However, opponents argue that it's just a matter of time before researchers will want to switch from predicting and diagnosing to preventive measures through genetic bioengineering, says Mulhall. "With 99 percent of the human genome mapped, it's only a matter of time before someone will use that information to discriminate against the 'genetically inferior' or create humans completely resistant to disease. This is the dilemma we face. Just how far do we go?"
To most of us, the idea of a posthuman or new human species is downright ludicrous. But as, Bostrom argues, if it has even a small chance of happening, we must begin to consider the consequences. "By historical standards, things are now happening fast, and it seems fairly probable that molecular manufacturing and superintelligent machines will be developed in this century," he says.
This scenario is both scary and exciting, he continues, adding that possible outcomes range from extinction to unimaginably wonderful lives. "We could eventually become ageless creatures with vastly improved intellectual, emotional and moral capacities that would enable us to have experiences that are impossible with our current neurobiological limitations. Human nature as we currently know it is not an eternally fixed constant, but, I believe, an early draft of a work-in-progress."
In this debate, the range of opinions stretches from those who fully support merging artificial and human intelligence to those who adamantly advocate worldwide bans on all transhuman related research activities.
Of primary concern for Cameron are the dangers of biotechnology and its ability to destroy the uniqueness of human dignity. "As C.S. Lewis warned a half-century ago in his essay The Abolition of Man, the new capacities of biotechnology give us power over ourselves and our own nature," says Cameron. "But such power will always tend to turn us into commodities that have been manufactured. As we develop powers to make inheritable changes in human nature, we become controllers of every future generation."
This isn't to say that genetic based-medicine is entirely bad, he continues. Recent advances in biotechnology have brought about wonderful discoveries. And he believes it would be a great error to think that all biotechnology is inherently evil or that all biomedical research is unethical. "We recognize and applaud ethical research," says Cameron. "However, not all technological breakthroughs are so clearly ethical."
National Debate
Despite the often-heated arguments over how we should use this technology to enhance our lives, one important point both sides can agree on is that the discussion of the future of the human race must move to the forefront of American conversation. And as members of the scientific and medical communities, all radiology professionals owe it to themselves to become informed. The implications for us all are simply too big to ignore, says Mulhall.
"Simply pushing the issues aside will not get us anywhere," he says. "For example, President Bush's current administration is making a grave mistake in blocking the development of new stem cell lines. By this administration refusing to discuss the stem cell issue, the bulk of the research has moved overseas. China, Korea, Japan, India and a handful of other countries are zooming right past the United States in any areas of research where the administration is intending to impose a moral agenda on science."
The truth, he adds, is that regardless of whether stem cell research is morally right or wrong, the approach is ineffective in restricting research. If someone wants to impose a moral agenda, they are going to have to find a different way to stop the research, he says.
Cameron agrees. Instead of drawing lines in the sand and playing politics, he advocates bringing all sides of the debate together to engage in a meaningful discussion. "The only way to address these key questions is to ask the hard questions early," says Cameron. "Hearing the hard questions early allows the key thought leaders on both sides of the debate the opportunity to share ideas and discuss policy."
Not only will the public be more likely to embrace technology previously viewed as threatening, says Cameron, but there's another added benefit for the business community and the companies who have invested vast amounts of money into the research and development of this technology. "You will actually create a market that will be accepting of your technology. I've attended many meetings on this technology and the businesses are already asking these questions. They want to address the ethical issues early so that down the line these questions will already have been raised and addressed and we will have a market for their product."
Early discussion of the ethical issues is key. He points to the "fiasco" that recently occurred in Europe as an example of mistake we can all learn from. "There is almost zero market for bioengineered agricultural products because of the incompetent way the technology was launched. Environmental activists were up in arms," says Cameron, "because they were never consulted. They viewed the new technology as a danger. The end result was a market that refused the AgBio products."
Now that $4 billion has been given to fund nanotechnology and its related biosciences through the National Nanotechnology Initiative, Cameron wants to know if the Bush administration is going to encourage the discussion of the hard questions so that we can produce products driven by this technology that respect the human condition, as well as safety issues. "Unless we critique these technologies," says Cameron, "not only will human dignity suffer but the market will suffer as well. As consumers of genetic-based medicine and other possible applications, we'll oppose the research if we do not participate in the discussion. And a fiasco similar to the European AgBio debacle will begin to develop."
A good example of the way different sides of a political argument spectrum were able to come together is Proposition 71, the California Stem Cell Research and Cures Initiative. "You had the Catholic Church and the feminists working together, forming their policies. They were probably holding their noses at each other, but they were working together on the political issue. They were sharing a conversation about our national policy and how we should move forward through this new day and age," Cameron says.
Whether or not a discussion will lead to a compromise remains to be seen. Some scholars are pessimistic about the possibility of reaching a compromise. H. Tristram Engelhardt, PhD, professor of philosophy at Houston's Rice University, says that the two sides in the stem cell debate, for example, are "moral strangers" whose basic beliefs will never permit agreement on policy. Others point out that current President's Council on Bioethics' policy recommendations, which forbid embryo stem cell research on one hand but allow production of unused embryos during in vitro fertilization on the other, are already political compromises.
And still when it's all said and done, what truly may determine the course of the next decade of scientific research is what makes the world go 'round: money. There's almost $4 billion dollars being invested over the next four years and that, says Cameron, proves nanotechnology, biotechnology and IT are ready to break out from the basic research stage. The National Cancer Institute announced on Sept. 13 a new $144.3 million, five-year initiative to develop and apply nanotechnology to cancer. Federal funding for nanotechnology research and development has increased sixfold, from $116 million in 1997 to an estimated $961 million in 2004. And corporations are following suit. GE gobbled up Amersham plc to form the $14 billion bioscience powerhouse GE Healthcare, positioning themselves to be a major player in the bioscience driven future. Pretty soon all types of applications will be showering down upon us, as where the money flows, research and discovery are not far behind.
Role of Radiology
So how do we decide the limits of human enhancement? Current technologies are already pushing the limits. And behind lab walls, the next level of research is underway. There are techno enthusiasts who want unlimited ability to enhance the human race as far as technology allows. There are those who argue that a complete ban on related research is negligent. Others say we are going too far too fast. These new questions need to be addressed now. They will have a profound effect on what it means to be human.
In an age of uncertainty, one thing remains clear. The only way to determine the right course is to bring together prominent stakeholders in this debate – from the left and the right, those who would welcome the prospect of a "posthuman" future, to critics who want to ensure that human integrity is safeguarded and the good retain center stage. And as radiology professionals, those who may be on the front line of bioscience integration, we must take a leading role in the ethical debate.
"It is by having this conversation," says Cameron, "and having it in on an international scale, that we can best encourage understanding of the potential significance of these technologies and ensure the primacy of human dignity in their development."
— Jeremy Kuhar is the senior editor of RT Image.
source: http://www.rt-image.com/content=7904J05C489EA08440769C744462A8A41 5may2006
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