In an office two levels below the reference room in the Cushing-Whitney Medical Library, Matthew Weed is reading a copy of Cell. He is listening to it, really, with the help of a Macintosh computer and software that converts text into electronic speech. Think of a robot conversing in Portuguese, at quadruple speed, and you’ll have a rough idea of what Weed’s computer sounds like to the uninitiated. But he understands every word, even as he cranks the program as fast as it will go. Over the course of a year, Weed will absorb 10,000 journal pages in this way, by ear.
His life as a blind (and severely diabetic) third-year graduate student in the Department of Genetics continually presents logistical problems, such as how to follow a discussion about a gene map that he cannot see, how to stay alive while crossing three lanes of traffic on South Frontage Road, and which way to feed a dollar bill into a Coke machine. (“Experimentation is the spice of scientific life,” he jokes when the machine spits the bill back at him and he has to try again.)
Without sight, he is sharply aware of the visual basis for communicating ideas in the life sciences. The findings reported in journal articles often depend on evidence found in the charts and photographs accompanying the text, and Weed is constantly working from incomplete information. “Most of the evidence that we generate could be represented verbally,” he says, “but it’s usually represented visually because it can be done more efficiently. It leaves me trying to go back and get the words out of the pictures. I’m not getting the visuals; I’m only getting one stream of information.”
Weed’s acute sensitivity to missing information has provided the foundation for his academic work: He is studying how missing information about science affects society. His dissertation will explore how key decisions are made in the lab and clinic and attempt to show how findings in the scientific literature are often distorted by the news media–and consequently misunderstood by politicians and the public. “I’m as interested in how society answers its questions as in how science answers its questions,” Weed says.
Building on a strong foundation in political science (including his undergraduate degree from Yale and a master’s degree from Princeton’s Woodrow Wilson School of Public and International Affairs), the 29-year-old Weed will examine how public understanding of science influences funding decisions. Weed says that reporters often make incremental advances sound more definitive–and relevant to human health–than they really are. Reporters suppress what scientists understand implicitly, which is: “This is true in the lab. We don’t know yet what we’ll see out in the real universe.” Weed says that the inaccuracy and distortion common in news coverage of biomedical science can have far-reaching consequences. “Policy and funding decisions are based on what the general public and Congress think,” he says, “not necessarily what scientists think.”
On a more fundamental level, he is interested in the factors that influence decision-making within the basic sciences and clinical medicine. “In the lab, it could be ëWhat model organism does one choose to study a problem?’ In the clinic, it could be a case such as the Penn trial,” he says, referring to the clinical gene therapy research that resulted in the death last fall of 18-year-old Jesse Gelsinger. “Why did the people doing the work choose an adenovirus as opposed to some other kind of vector? It may have been the only one they could have used. But adenoviruses are known to have fairly severe side effects, and, at dosages high above those in the protocol, those side effects killed the patient. Why were those choices made?”
Weed’s advisor in the Department of Genetics is Professor Kenneth K. Kidd, Ph.D., who studies the genetics of complex human disorders and the organization of the human genome–areas that raise ethical issues akin to those that interest Weed. “I’ve been very involved with these ethical issues in trying to communicate good science to the public,” says Kidd, a leader in the fields of molecular and evolutionary genetics, “and that naturally overlaps with a lot of Matt’s interests.” Weed’s dissertation committee includes faculty members from five disciplines, including political science, management and the history of medicine.
Ultimately, Weed hopes to serve as a mediator between scientists and the nonscientists who make public policy. A small, fit man with thinning brown hair and an alert manner, Weed would like to be the commentator journalists call upon to put advances in perspective. He imagines himself on television, say The NewsHour with Jim Lehrer, as the expert “who pushes scientists to be truthful in what they say and who also pushes the media to slow down a little bit in the conclusions that they are drawing about the sciences.” Weed hopes to advocate for funding decisions based on the promise of research rather than on how well special-interest groups sway people in power.
His sense of politics is well developed, and Weed himself knows how to identify and enlist key players in order to get things done. It was this astuteness that allowed him a decade ago, as an undergraduate at Yale, to radically expand resources available to the blind. Hugh Flick, dean of Yale’s Silliman College, recalls that when Weed was admitted to Yale College in 1989, “I think they accepted him expecting he would take advantage of the accommodations Yale had offered [to blind students] in the past, which was mostly Braille and recordings for the blind.”
“HE CHANGED YALE”
Weed was frustrated by the cumbersome process of using audio tapes to “read” textbooks and journals. So in 1990 he and friend Victor Grigorieff, a computer science major, linked an image scanner with software that could convert the print to ASCII text and then to synthesized speech. Weed says that Yale’s willingness to provide the equipment for high-volume scanning made it a pioneer among universities. Scanning texts allowed him to cover material much faster than he could by listening to tapes, and locating quotations and statistics to use in papers became “infinitely easier.” By persuading faculty members and administrators to help him pursue his academic interests fully, Weed set a precedent that has helped disabled students who have followed. “He changed Yale,” Flick says.
Weed has also enlisted allies to help him manage his diabetes, which can be difficult to accomplish on his own because of his blindness.
He and a coordinator provided by the medical school have assembled a group of student volunteers who monitor Weed’s blood-glucose levels. The students take turns meeting Weed at his dormitory room morning and evening to prepare his twice-a-day insulin injections. (Weed was diagnosed with diabetes when he was a year old and developed glaucoma as a preschooler, possibly as a complication of diabetes. By fifth grade he had lost his vision completely.)
One of the students who has prepared Weed’s insulin over the past several years is Abby Pease, who graduated from Yale College in May. She heard about Weed through Flick and signed on as a volunteer two summers ago because of her interest in medicine. An ice hockey player, Pease commuted on inline skates from the undergraduate campus to Weed’s room at the medical school. One day Weed asked her to teach him to skate. Pease recalls saying, “ ëYou’re crazy. I’ll see you later.’ ” But Weed prevailed. They began by practicing in the Payne Whitney Gymnasium, with Pease skating backward while holding Weed’s hands. Pease never thought they would graduate to the rougher terrain of city pavement. But they did, and a year ago a team of students, including Pease, guided Weed through a marathon, skating 26 miles along the streets of Manhattan, to New Jersey through the Lincoln Tunnel, and back to the city over the George Washington Bridge. (Learning to skate was similar to the process Weed went through when, at age 4, he learned to ski in his native Colorado. A few times a year he hits the slopes in Vermont, guided on the novice and intermediate trails by friends who call out voice commands.)
Although Pease found Weed to be patient when he taught her to prepare his insulin, she also thought him brash. (Or as Flick puts it, “He doesn’t suffer fools easily.”) “I think it’s partly who he is and partly because he’s had to fight for what he’s done,” says Pease. “You need to earn his respect. He challenges you. He doesn’t think twice about asking the tough questions.” She has come to value Weed’s intensity. “I really feel like I’ve made a friend for life.”
Weed’s friends and colleagues have learned what kind of help Weed needs. People tell him their names when they say hello in a hallway or join him in the cafeteria. Fellow students at lab meetings help Weed to visualize a graph or chart by guiding his hand along its contours. Friends sort his paper money so he knows a dollar bill from a twenty.
Weed has become increasingly comfortable with this reliance on others, arguing that he is no more dependent than are the people around him–who eat food grown by others, rely on computers they couldn’t build themselves, and stay warm by burning oil delivered by tanker. “You are just as dependent on other people as I am, but it’s not in your face,” he says. He does not consider his life more difficult than the lives of those around him, just more complex. “Everything requires an extra step, or two, or 20. It’s not an impossible way of life,” he says. “It just requires planning.”
A GREAT, INTERESTING JOURNEY
It is a life Weed would not have known without advances in computer technology and the advent of laws requiring accommodations for the disabled. Had he been born just a generation earlier or not had sophisticated parents (a banker, who died when Weed was in college, and a teacher), Weed believes he would have spent his life in an institution. He seems unperturbed by the thought, saying, “We’re playing with alternate universe scenarios here. In an alternate universe where I didn’t have the resources of a powerful family and technology and the law coming to hand just at the right time, I wouldn’t have known what it would be like to have these opportunities.”
Weed’s mother, Patricia, resembles her son in choosing not to dwell on what might have been, for better or worse. She didn’t always see life that way. When her first (and only) child was a very sick infant and his survival was uncertain, she felt tremendous loss–the loss of the life she’d imagined with him. “It was scary. It was not what I had expected.” Over time she realized that she had to enjoy the moment without trying to picture the future.
“My life is so much better than I ever could have imagined. At 23, I would not have envisioned the happiness and sense of abundance and joy that we both have,” she says. “I’m so grateful that Matthew is part of my life. It’s been a great, interesting journey so far.”
A high-school French teacher in Colorado Springs, Patricia Weed hears from her son often, sometimes daily. They debate politics and philosophical issues, and work through any problems that arise. “Matt and I have always gone through problem, process, solution. We always go as quickly as possible to solution.”
This pragmatic approach and sense of adventure have shaped how Matthew Weed views science. Just as he faces his own limitations head on and solves the problems they present, he embraces the moral dilemmas posed by scientific advances such as genetic engineering and cloning. He acknowledges their dangers, but asks, “Wouldn’t it be worse for society to run away from a piece of knowledge just because we fear something bad might happen?” He hopes his perspective will help society to respond to change with courage and clarity of vision. “I can act as society’s lens, looking at what we do and why we do it.” YM