Scientists With Disabilities Must Confront Societal As Well As Physical Challenges

The name of Stephen Hawking is widely recognized both within and outside the scientific community as a premier scientist and best-selling author. But he is probably as famous for having overcome great physical odds as he is for his contributions to theoretical astrophysics and cosmology: Nearly all of his major work came after he was stricken in his early 20s with the debilitating neurological condition amyotrophic lateral sclerosis (ALS). While Hawking is certainly one of the most celebrated scientists with a severe physical disability, he is by no means the only such accomplished researcher. Geerat Vermeij, a professor of geology at the University of California, Davis, and a leading authority on the biology and evolution of mollusks, has been completely blind since he was three. Biochemist Edwin Krebs of the University of Washington, who won the 1992 Nobel Prize for physiology or medicine, is deaf. Following is a list of professional organizations and programs at some institutions for scientists with disabilities. Foundation for Science and Disability 236 Grand St. Morgantown, W.Va. 26505 Phone: (304) 293-5201, Ext. 513 Fax: (304) 293-6363 E-mail: u0072@wvnvm.wvnet.eduy Kimiko O. Bowman, president E.C. Keller, Jr., treasurer 230 members Program for Persons with Disabilities National Science Foundation 4201 Wilson Blvd. Arlington, Va. 22230 Phone: (703) 306-1636, Ext. 6865 E-mail: lscadden@nsf.gov Lawrence A. Scadden, senior program director Project on Science, Technology, and Disability American Association for the Advancement of Science 1333 H St., N.W. Washington, D.C. 20005 Phone: (202) 326-6630 Fax: (202) 371-9849 E-mail: bgoodric@aaas.org Virginia Stern, director Indeed, a National Science Foundation task force to evaluate issues concerning scientists with handicaps reported that in 1990 some 100,000 people with disabilities were employed in the scientific work force within the United States. According to an informal survey of officials at NSF, the American Association for the Advancement of Science (AAAS), and the Morgantown, W.Va.-based Foundation for Science and Disability (FSD), this number has increased since then. "We do not have exact numbers, but there are definitely more people with disabilities in the sciences than there were four years ago," observes Lawrence Scadden, senior program director for NSF's Program for Persons with Disabilities. A number of scientists interviewed for this article report that the nature of their disabilities played a significant role in their initial career decisions. Others say they were inspired to pursue avenues of research related to their impairment. There are some, however, whose chosen areas of investigation have been completely unrelated to their disability. Nonetheless, these researchers point out that they must cope with challenges, both logistical and social, that go beyond their personal disabilities. In addition, they note, the attitudes of their colleagues toward their disabilities also has had a substantial bearing on their successful pursuit of science. Many have had to overcome discrimination, and some feel that fundamental legislation, such as the federal Americans with Disabilities Act of 1990 (ADA), does not adequately or realistically address their concerns. Like other minority groups, disabled scientists have their own professional organizations that have helped facilitate their participation and address issues of concern to them within the scientific community (see accompanying list). Defining Disability Disabilities can take many forms. In the case of Hawking--who has attracted a large following with his writings, including the widely popular book A Brief History of Time (New York, Bantam Books, 1988)--ALS (also known as motor neuron disease or Lou Gehrig's disease) robbed him of the use of his limbs. Compounding his motor handicap was an attack of pneumonia in the mid-1980s, which required an operation to enable him to breathe. The operation completely deprived Hawking of his ability to speak. Today, he uses a combination of computers and speech synthesizers to communicate with the outside world. By now many people--among them colleagues, students, and some journalists--associate the fragile, smiling figure huddled in a wheelchair with a disembodied voice of a computer explaining the intricacies of black holes and the Big Bang theory. E.C. Keller, Jr., a professor of biology at West Virginia University who is the current treasurer and a past president of FSD, points out that in addition to motor and orthopedic handicaps and sensory disabilities, "there are people with handicaps which are not physically obvious--learning disabilities like dyslexia, for example." An issue that arises in the discussion of disabled scientists as a minority group is the degree of the impairment, or what constitutes a disability. Neither the National Science Foundation nor FSD--nor, indeed, any other agency--has arrived at a formal consensus as to when a physical loss should be considered a disability for which special provisions, facilities, or equipment may be necessary. While the ADA prohibits discrimination against people with disabilities and requires em-ployers to make reasonable accommodations for various handicaps, it does not provide a definition for "disability," either. As the 1990 NSF report indicates, what may appear as a relatively minor problem in one field of study may prove crucial in another setting. For example, while the loss of two fingers would not constitute a devastating disability in most situations, it might prove so for concert pianist or a surgeon. Making Choices Vermeij feels that his research path was an inevitable one. "I can never remember not being interested in natural history--I began collecting shells when I was 10," he recounts. "For me it was natural to work with shells and mollusks--they are tactile and easily handled." Under different circumstances, he speculates, "I might have chosen to study plants. I am very interested in them, as well. But they require a lot of visual work." Harry Lang, a physicist and science education researcher at the Rochester Institute of Technology who became completely deaf at the age of 15 after a meningitis infection, offers a similar reason for pursuing an entirely different course of study: "I had always loved science, but I must admit that physics and mathematics were much more visual, with so much written on the blackboards." Adds Lang, who was interviewed by The Scientist via fax: "It was a real benefit for me in those days." Not all scientists' career decisions are as directly affected by the nature of their disability. For instance, Keller, who is a paraplegic as a result of an attack of polio when he was young, earned his Ph.D. in statistical genetics. Robert Roper, a professor of atmospheric sciences at the Georgia Institute of Technology--who has to use crutches, also because of polio when he was 16--studies radiation in the atmosphere. "The work is very computer-oriented, and unrelated to my disability," he says. Roger Harris, an associate professor of biological structure at the University of Washington, is a physicist-turned- neuroanatomist whose career choices were made long before he suffered a stroke that weakened his left side, when he was 41. But since the stroke, he remarks, "My interests moved towards recovery following stroke, spinal-cord, and head injuries. I now teach a reading course on the subject, and--when I get money--conduct research in the area of spinal cord injury." William Skawinski, a postdoctoral research associate in chemistry at the New Jersey Institute of Technology, started to go blind from a degenerative condition while he was in college. Although his research focuses on the interaction of drugs with sodium channels in the cell wall, he is also a corecipient of a $360,000 grant to investigate the use of a technique called stereolithography, which converts computer- generated images of molecules to tactile plastic models for aiding blind and visually impaired students. "While you can convey three-dimensional images verbally, interpretation is very subjective, particularly as images become more complex," he explains. The sterolithographic models would give students a hands-on opportunity to perceive the important features of a molecule for themselves, he says. Access And Attitudes A fundamental concern for most scientists with disabilities is accessibility. For those with sensory impairments, this challenge takes the form of access to information. In the case of those suffering motor disabilities this could, very simply, be the ability to get to a location such as a laboratory or classroom. "As a student going blind, I found it hard to keep up with the amount of reading material--there is very little in Braille," recalls Skawinski. Vermeij stresses the need for blind scientists to find suitable readers and people to assist in the laboratory. "I need to read vast quantities to keep abreast of what is happening in the field," he maintains. Vermeij employs two part-time assistants to read aloud to him and help perform experiments. "Obviously, deafness has its greatest impact on communication," and hence access to information, Lang points out. This is particularly so, he adds, for congenitally deaf students. "For many of them, English is a second language. American Sign Language is the first language. The availability of sign-language interpreters has opened many doors in both the educational and scientific communities." But unlike blind students, to whom certain necessarily visual avenues of science are not open-- surgery, for example, or microbiology--Lang does not perceive similar barriers for deaf students. "I do not feel there are any fields of science that deaf people cannot enter," he declares. Lang recently published Silence of the Spheres: The Deaf Experience in the History of Science (Westport, Conn., Bergin and Garvey, 1994) a book about the achievements of nearly 700 deaf scientists. The attitudes of teachers, classmates, and colleagues, he says, play an important role in creating perceptions about what is possible and what's not. The majority of the disabled scientists interviewed maintain that personal interactions with their colleagues have been very positive. "Most of the people I've worked with have had a tremendous attitude," says Skawinski. "I think that eventually advisers and colleagues 'forgot' that I was blind." Roper mentions a similar relationship with his colleagues: "Every now and then, people I know, but do not interact with on a daily basis, will see me on campus and stop me to ask what happened: Why am I on crutches? I take this as a real compliment." At the institutional level, however, Roper, who served as chairman of a committee for the handicapped at Georgia Tech for several years, feels that there is still very little being done for people with disabilities. "The ADA has not changed anything at all," he declares. "The [Georgia Tech] administration just adopts a brushfire technique--in general they don't do anything unless they're getting sued." "The ADA has not made any measurable difference," agrees Vermeij. "[Accessibility] varies from place to place--I have always found UC-Davis most accessible, while the University of Maryland [where he was a professor of zoology from 1980-88] was not." But others, like Keller, contend that the ADA has had an impact. "In the mid-1970s, [section] 504 of the [1973 federal] Rehabilitation Act provided ADA-like guidelines for all federal funded institutions--because of which universities were already operating under these conditions [when ADA was passed]," he says. "There are, however, noticeable changes to be observed in workplaces outside federally funded establishments. "For instance, there is a lot more activity now in terms of rectification for grievances [in places without federal funding]," he observes. Lang, too, attests to the benefits of the act: "ADA has helped with the telephone relay service," by mandating telecommunication devices for the deaf or special operators. "Now, deaf people can use the telephone with anyone, and the telephone should no longer be a reason not to hire a deaf person. Many work environments have made great strides to [overcome] the communication barriers." Meanwhile, some scientists are of the opinion that ADA-like legislation may actually prove to be of greater harm than good, by segregating people with disabilities from the mainstream. "I agree that institutions should make whatever adjustments they can to increase accessibility to all their facilities," says Harris. "But I certainly don't feel like I'm in a minority. While I use a cane and there are some things I cannot do, I think I am as normal--if indeed there such a thing as a 'normal' scientist--as anyone else."

Scientists With Disabilities Must Confront Societal As Well As Physical Challenges

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