Zoller/ Booksh / Sonnerup / Swanson / Nieman
In 1985, at age 43, William H. Zoller was an
international authority on environmental and volcanic chemistry.
His curriculum vitae listed more than 150 scientific publications.
He had trained 45 graduate students at the University of Maryland
and at the University of Washington (UW) in Seattle, where he
attracted research funding that exceeded $5 million. Zoller made
four research expeditions to Antarctica and was the leader of the
first team of scientists to land in the crater after Mount St.
Helens erupted. He ventured into 34 other active volcanoes with
an Indiana Jones flair that earned him the nickname, "Wild
Bill" Zoller.
Then in 1987 an auto accident caused a brain injury that threatened to end his career. The injury did not cause serious physical disability. Rather, it took away Zoller's memory of life after 1965, when he was an undergraduate chemistry major at the University of Alaska at Fairbanks. Like the rest of his post-accident existence, chemistry was frozen in time at that point. Gone were memories of new discoveries and advances, his career, and research. Zoller remembered two children as infants, and his wife, Vivian, as she was when they married 20 years earlier. But his contemporaneous family were new acquaintances. He had to relearn how to write, read, and calculate. In relearning basic chemistry, Zoller actually used the freshman-level text, Chemistry in Modern Perspective, that he coauthored in his pre-accident life.
Zoller developed ways of coping with a lingering short-term memory loss. At one point, he went to bed with a pocket appointment book opened to the name page on his nightstand. Then, upon awakening in the morning, he immediately checked it to remind himself of his name. Other adaptations allowed Zoller to return to teaching. He passed some of his own accommodations on to students for use in a nationally known environmental education program that Zoller founded.
"The accident left me profoundly changed in many ways," Zoller said. "It made me very sensitive to the fact that life can change instantaneously. Most people don't realize how easy it is to become disabled. We're all temporarily able-bodied. Disability can happen to anyone. Anyone can suddenly need help from family, friends, employers. Anyone can find himself unable to work without accommodations from an employer. The difference between ordinary life and disability can be something as simple as a patch of ice on a dark highway early one morning."
It was "black ice," invisible ice, on a highway at 5:30 a.m. one January day in 1987 that swept Zoller into his new life. The near-fatal crash occurred two years after Zoller came to UW. After receiving a Ph.D. in 1969 from the Massachusetts Institute of Technology (MIT), Zoller held positions at MIT, the University of Hawaii, the University of Maryland, Lawrence Livermore National Laboratory, Los Alamos National Laboratory, and elsewhere.
Zoller was driving to the airport with an associate from Los Alamos, where both collaborated on nuclear chemistry research. The car met the ice. It careened into a half dozen others that had already skidded off the road. The chain reaction disaster continued as another car skidded into the twisted metal that was Zoller's vehicle. The impact broke Zoller's lap belt, his pelvis, smashed his ribs, collapsed his lungs, caused two enormous blood clots in his brain, and permanently damaged brain regions involved in short- and long-term memory.
Vivian recalled Bill's awakening from a coma one week later. "The nurse called and said she had just fed Bill and he was sitting up in a chair. I thought, 'Oh, wonderful.' I got to the hospital and asked 'Bill! How are you?' He looked up, puzzled, and just stared. There was no recognition."
Experts on the brain say that the kind of injury experienced by Bill Zoller is not well understood. Likewise, such injuries are not rare. In 1996, Zoller appeared on an episode of television's Oprah Winfrey show that dealt with brain damage. He received many letters asking for advice on resuming work and other matters from brain-injured people and their families. In these accidents the brain seems to retain much of the content of a person's pre-injury memory. But the neural circuits to access the stored data are disrupted. The brain, in effect, must rewire itself to establish new routes to retrieve the data. Recovering basic functions such as walking and speech may be rapid, with higher intellectual functions returning more slowly. Regaining memory sometimes is more a matter of refreshing old memories and reminding the person about past events than it is actual re-learning. Bill Zoller, for instance, started to read again with "Dick-and-Jane" primers, but progressed to university-level reading within a few weeks.
Within nine months after the accident, Zoller returned to teaching a class of 300 first-year chemistry students at UW. Vivian drove him to work because he could not remember how to drive or find the way. Teaching assistants showed him the way to the lecture room and back to his office.
Robert O. Watts, who chaired the department of chemistry from 1987 to 1992, believes that the early return to teaching was important in Zoller's rehabilitation. "It was a remarkably courageous move," Watts recalled. "A number of us on the faculty had serious reservations about whether Bill would be able to teach. All his colleagues were stunned at how Bill regained his position as one of the most popular first-year lecturers." Watts recalled that Zoller's classes were always the first to be filled to capacity. The major accommodation, Watts said, was patience and encouragement as Zoller readjusted to his job.
Zoller did remember undergraduate chemistry from the University of Alaska at Fairbanks but relied heavily on lecture notes. Without them, Zoller would have been unable to remember what he taught a few minutes earlier. The complete text for each lecture is now in Zoller's computer. He makes the texts available to students and plans to put them on a World Wide Web page. "A positive side effect of the accident," Zoller observed. "Positive for the students. They now have the complete set of lectures for reference." Zoller discovered that he could use slides as memory cues to bring forth whole blocks of related information from his brain. He uses more than 700 computer-generated slides for classroom lectures.
That adaptation became the key to "Science Outreach," a program that sends UW chemistry undergraduates into high school and junior high school classrooms to ignite interest in environmental chemistry and environmental issues. UW undergraduates have made presentations to more than 6,000 high school students each year. At spring break, vans of student volunteers and leaders travel throughout Washington and adjacent states to speak to high school classes on atmospheric chemistry and other topics. About 50 other universities have programs modeled on the UW environmental education outreach, Zoller said.
"The outreach program was a marvelous concept," said Watts, who now is head of the chemistry school at the University of Melbourne in Australia. "I'm copying it myself and introducing a version in Australia."
The program began when an undergraduate student asked Zoller to lecture at his old high school. Zoller's schedule was full, but he encouraged the student to make the appearance and showed him how to use slides to recall information. The technique is useful out of the classroom, as well.
Zoller has become a popular figure on the American Chemical Society (ACS) national lecture circuit, which supplies speakers for meetings of ACS local sections. He travels by himself for these appearances and has lectured in places as distant as Europe. Zoller does drive to work now and functions so well that many students, newer associates at UW, and casual friends learned about his memory loss only after the Oprah Winfrey appearance.
Zoller uses several memory refreshing techniques in his daily work. The most important is a date book in which he immediately records each appointment, meeting, class time, and other activity. Zoller keeps the book open on his desk and checks it constantly. A simple computer daily scheduling program provides a backup. It shows a list of appointments and can sound an alarm when an especially important appointment time is approaching. Zoller also makes extensive use of ordinary yellow stick-on note slips.
Many people take offense when told that they're repeating themselves or when associates constantly remind them of upcoming events. "People in the chemistry department had to learn that Bill does not get offended when someone refers to his memory," Vivian said. "He learns to remember by being reminded." Colleagues learned to accommodate Zoller's injury in other attitudinal ways. Emotional gaps remained long after the accident. Zoller, for instance, couldn't distinguish good-natured ribbing from serious criticism, had trouble comprehending jokes, and took colloquialisms seriously. One day Vivian suggested to an impatient husband, "Keep your pants on." Bill looked down in panic at his trousers and clutched at his belt. Colleagues learned that the new Bill Zoller tended to take everything literally.
Returning to once-familiar settings also seems to rouse old memories. Vivian recalls a recent sightseeing trip to Mount St. Helens when Bill got one look at the crater and panicked. "He was remembering the danger when he set foot in the crater so many years ago." The lecture hall has a similar effect. Vivian recalls that before returning to work, Bill practiced his lecture in front of a mirror for hours day after day, yet could not deliver a coherent talk. But in the classroom, he performed adequately, and students gave Bill an "average" rating in their grading of professors' performance. He since has become the most highly rated teacher in the department. Students describe Professor Zoller as a virtuoso, an actor whose return to the stage brings back much of what must have been the old "Wild Bill" persona. He may greet a sleepy-eyed class by performing attention-getting chemistry demonstrations, setting off various bangs and a chorus of startled laughter. Students look on and take notes in smiling, rapt, attentive awe.
Zoller believes that his disability helped him return to what once was the primary function of university professors-- being excellent undergraduate-level teachers. "As I see it, I was given a new life. I couldn't have done this without the love and support of my wonderful wife and my family. I'm going to try to devote as much of my new life to helping young people understand and love chemistry as much as I do."
But Zoller also recognizes the need to return to research and recoup his old knack of attracting research grants. He acknowledges the reality of academia, which places great emphasis on senior scientists' success in research. How did he get all those grants and publish all those papers? Zoller leafs through the publication and lecture list from his former life. It covers almost 50 single-spaced typed pages. "It's going to require collecting data and publishing research papers and using them to support grant applications," Zoller said. "I know I can do it. I did it once before." Zoller is working on an atmospheric chemistry paper that he hopes will be his first publication since the accident. He is working on grant applications for an atmospheric research project in Antarctica and for a new approach to atmospheric sensing of aerosols and particulates involved in air pollution.
"The aerosol project would be a new direction for me, and it's underway as a direct result of my disability," Zoller said. He had been interested in the potential use of model-type airplanes in atmospheric sampling. Zoller learned about a truck driver, disabled with a leg injury in an accident, who built model airplanes. The driver, Jay Olsen, had funding from the state vocational rehabilitation department to train for a new career. Olsen is now working with Zoller and a group of students on the use of model planes in air pollution monitoring. Olsen and students build the wooden planes in a shop near the UW chemistry building, rigging them with sample collection devices. Some are 12 feet long with a 12-foot wing span and use a big chain saw engine to turn the propeller. Zoller envisions use of the planes as an inexpensive way to collect air samples in urban areas, for instance, where larger vehicles would be unsuitable.
At age 53, Bill Zoller is mapping out a fresh start in scientific research. Using simple physical and attitudinal accommodations for memory loss, he already excels as a teacher and lecturer. Some of his accommodations have had wide application in the environmental education program that Zoller founded. Others, like simply praying when lost en route to a lecture appearance, are uniquely personal. Together, they are building a second career in chemistry for a scientist who a decade ago appeared hopelessly brain injured.
Hiring a new university faculty member in the
sciences may involve a financial commitment of several hundred
thousand dollars. It includes recruitment, costs of setting up
the researcher's laboratory, salary and benefits, and financial
support while the scientist develops his or her own funding
sources. Search committees thus put candidates under a
microscope, getting opinions from many sources outside and inside
the university to make sure they've found the right person.
In the course of taking his first job in academia, analytical chemist Karl Booksh was flown in for an unusual interview at the Arizona State University in Tempe (ASU). ASU asked Booksh to spend a couple of days talking with the maintenance manager of the chemistry building. It wasn't a matter of the maintenance staff holding an after-the-fact veto over faculty appointments. The administration simply wanted to make sure the labs, offices, and rest of the chemistry building were totally accessible for Booksh. He works from a wheelchair because of a spinal cord injury.
Karl Booksh is among a new generation of scientists with disabilities who have encountered this kind of proactive attitude toward accommodations for students, job applicants, and new employees. Booksh and other younger scientists with disabilities went through these critical periods in the 1980s and 1990s. By the mid-1980s, they often found buildings with many physical accommodations already in place and a societal mind-set with greater recognition of the capabilities of people with disabilities. Whereas scientists in earlier generations recall instances of being discouraged by teachers and excluded from job opportunities, Booksh's generation recalls more encouragement and accommodation.
"Older scientists had to show that people with disabilities could be successful," Booksh said. "Success breeds success. Their success lowered barriers and eased concerns that schools and institutions had about expending time and resources to become more accessible. In a way, my generation, and the generations after me, will have it easier because we are standing on the shoulders of giants-- or at least a giant pile of those who came before us."
The preemployment building tour at ASU was only one example of the more positive conditions that Booksh has encountered. For instance, handicapped student housing already existed at the University of Alaska at Fairbanks when Booksh became disabled. The injury occurred in 1986, the day before final examinations during his first year in college. While competing in a flag football game, Booksh leaped to catch a pass, landed on his head, broke a vertebra in his neck, and severely damaged his spinal cord. The accident left Booksh partially paralyzed, unable to walk, with limited use of his arms and hands.
When Booksh returned to school, there was no problem with housing, because the university already had an apartment unit designed for students with disabilities. His apartment had an entrance ramp with a larger bedroom and an accessible bathroom. "This was a small school with very limited financial resources," Booksh recalled. "But they were very helpful in seeing that I had everything necessary to continue being a student." Accommodations included installation of a small ramp and platform at a laboratory bench so that Booksh could work with his wheelchair at benchtop height. The emergency shower and eyewash station already were accessible. The university also assigned maintenance personnel to keep the ramp outside Booksh's apartment clear of ice and snow.
The campus' physical layout and harsh Alaskan climate did pose insurmountable problems that forced Booksh to alter his career plans. Booksh originally wanted to be a high school teacher and planned to take a dual undergraduate major in mathematics and chemistry. But the chemistry and math buildings were on opposite sides of the campus. Wheeling the distances several times a day proved impossible, especially during winter. "We got lots of snow in early winter and late winter when the temperatures were mild, like in the teens," Booksh recalled. "The rest of the time it was 35 or 40 below zero and too cold to snow. There was just no way around the weather and the distances. So I stuck with my first love, chemistry."
Booksh encountered a similarly accommodating atmosphere after graduating cum laude from Alaska and moving on to graduate school at the University of Washington in Seattle. "They took it upon themselves to look around the department and see what changes might be needed," Booksh said. "The university was very proactive. They assigned a staffer, Tamra Olsen, to make sure the building was accessible, and the changes were in place by the time I arrived." Karl and Tamra decided on several accommodations. These included installation of an automatic door opener on Booksh's office door, and a small, stairway-lift elevator so Karl could move between two floors in a building that had only stairs. The university even rearranged furniture in the faculty coffee room to make it more convenient for Booksh's wheelchair. Almost of all Booksh's graduate research involved computer-oriented analysis. It required no changes in laboratory facilities.
Tamra proved to have an even greater impact on Booksh's personal life, when she and Karl were married.
One semester of wheeling several blocks from his apartment to campus over Seattle's hilly terrain was enough for Booksh. He decided to drive and discovered that the handicapped parking spaces were in a university lot whose central location warranted sky-high fees. Booksh, of course, saw no reason why people with disabilities, who had no alternative parking site, should have to pay the higher fee. He got the fees reduced, working through a facultystudent committee on people with disabilities. The committee chairperson invited Booksh to join the panel. His participation led to invitations to serve on several committees on disability, including the University of Washington's DO-IT Project for precollege students with disabilities, funded by the National Science Foundation, and the American Chemical Society's Committee on Chemists with Disabilities.
The ASU administration has been very accommodating, according to Booksh. "They flew me out for several days to meet with Lane Briley, the chemistry building manager, to make sure that everything would be accessible. He basically told me, 'Tell us what needs to be done, and we'll make it work.' He followed me around through a typical day. We identified possible barriers and discussed ways of changing them."
Modifications were relatively simple. The chemistry department already had automatic doors and accessible restrooms, for instance. Maintenance personnel lowered an emergency eyewash in a lab and modified an emergency shower. Some light switches were too high. Briley and Booksh are still deciding whether it would be more practical to lower them or install remote control switches. Booksh's office has low bookcases and file cabinets, and the desk is raised to wheelchair height. ASU also has plenty of handicapped parking spaces near the chemistry building entrance. Booksh drives a standard sedan equipped with hand controls for the accelerator and brakes, enhanced power steering, and a knob on the steering wheel that makes turns easier. The car has a wheelchair lift retrofitted to the roof. Booksh transfers from the chair to the driver's seat, and the lift device stows the folded chair on the car roof.
"We're basically carrying on an ongoing dialogue that tries to balance cost restraints and needs whenever a physical change or other accommodation is needed," Booksh said. "The goal is to find the most cost-effective way in the long run to make things work. I'm not getting anything extra or special-- just what's needed for me to work at the same level as other people in my position. The approach is working out well so far." Instead of buying a special desk, for instance, Briley and Booksh decided to elevate a standard desk with wooden shims.
The dialogue will continue as Booksh and associates tackle the major goal of modernizing analytical chemistry laboratories and equipment at the university. Renovations will be accessible to able-bodied students and faculty and to those with disabilities. One project involves the construction of two small darkrooms at the center of laboratories for the use of lasers. The doors and other features in the darkrooms will be wheelchair accessible. Booksh's research involves the development of environmental sensors to detect pesticides, heavy metals, and other toxic substances. Most detection and analysis of environmental samples currently require hours or days. Samples must be gathered, packaged, and sent to a laboratory. Booksh envisions portable sensing technology that can do an analysis on a real-time or near real-time basis: Drop the probe into a lake, stick it into the soil at a remediation site, expose it to air in a factory that uses volatile organic compounds (VOCs). It would provide a read-out within a few minutes. Booksh wants to develop a device portable enough so that all the electronic components will fit into a backpack or suitcase-size case.
Booksh does much of his research with computer calculations. But some aspects do involve lab work, especially research with lasers and other light sources. These pose his major lab safety concern. For a person in a wheelchair, the laser beams are at eye level. Booksh, of course, wears safety goggles during experiments. But he still feels vulnerable to a side shot. When actively involved in setting up and conducting an experiment, he knows the location of the beams and the potential danger areas.
Like many other scientists, Booksh said that the Americans with Disabilities Act (ADA) has had its greatest impact on life away from work. It has improved access to shopping centers, theaters, restaurants, and other public places, and has simplified travel. Booksh does see several important job-related ADA impacts. One has been psychological reassurance. "When applying for a job or a grant, you know you won't be written off because you have a disability," Booksh said. Another involves a motivating effect on employers. "The ADA gives fundamentally good and well-intentioned people a practical reason to do what they know is right. That means giving the scientist with disabilities the same facilities and equipment that allow able-bodied people to do their jobs."
Booksh noted that there is strong demand in the job market for the most talented scientists and engineers. Scientists with disabilities often are among this elite group, thanks to a cluster of characteristics, including creativity and commitment, that employers value. When faced with multiple job offers, scientists with disabilities should go with the company or university that will offer the greatest opportunity to excel, Booksh advised. He believes that greater accessibility exists in pockets of excellence, rather than across-the-board, with young students and scientists flocking to certain schools and employers. "Look for companies that are concerned with what their employees can do, rather than what they can't do. Ask for what you need to do the job, and make sure that you use every opportunity given you to the fullest."
As the situation for scientists with disabilities grows more positive at the university and job-seeking levels, Booksh sees a need to focus more attention on eliminating barriers in the very earliest stages of a scientist's career. "We need to look at the formative years and find ways to encourage students with disabilities to go into science. In so many ways, science can be the ideal career because it does not require great physical ability. Grade school teachers have to get more kids excited about science, and especially kids with disabilities. We have to make it clear that people with physical disabilities can do science as well or better than able-bodied people."
Karl Booksh's leisure activities include reading medieval history. Many of the problems that truly hindered people with disabilities from a career in science are becoming ancient history. The proactive attitudes toward accommodation that Karl encountered en route to his career are increasingly common. These attitudes will open more and more doors to people with disabilities who are fortunate enough to recognize science's allure in elementary school or high school.
"I have a great job for a person with a
disability" chemical oceanographer Rolf Sonnerup said.
"Ninety-nine percent of the time I'm sitting at a computer
writing, programming, or doing simulations of how the ocean
behaves. I was a carpenter before graduate school. I still love
to make furniture in my home shop. But as a career, I'd rather
not be climbing on steep roofs doing shingles. I'm happy right
here."
A rock-climbing accident let Sonnerup in on one of the best-kept secrets about careers in chemistry and other fields of science: The nature of most modern scientific research minimizes the importance of physical prowess. Sonnerup is in a field of science that may require fieldwork under the challenging conditions that exist on ocean-going research vessels. But with planning and a few physical accommodations, there's nothing to prevent Sonnerup from a career just as rich and fulfilling as that of an able-bodied person.
The accident resulted in the amputation of Sonnerup's right leg just below the knee. He wears a prosthetic leg, has difficulty walking more than a few hundred feet, and cannot stand for long periods of time. It also destroyed muscle tissue and bones in Sonnerup's left arm and hand, leaving the arm with diminished strength. Yet outwardly, the disability often is not apparent; many casual friends and fellow graduate students at the University of Washington (UW) at Seattle are unaware of it.
Sonnerup was in his second year of graduate study in chemical oceanography when the accident occurred in July 1993. Here is a snapshot of the fateful seconds at the accident scene. Sonnerup stands at the base of a steep cliff, belaying a friend climbing above. Rolf holds one end of a safety rope that runs through a carabiner fastened to a tree at cliff top and to the climber's safety harness. The climber grabs a crevice in the cliff for a handhold, and a whole section of rock tears loose and crashes down onto Sonnerup.
Although critically injured, Sonnerup had the presence of mind to lower his friend, who flagged down a car for help. It took five weeks of intensive care and multiple surgeries at Harborview Medical Center in Seattle to deal with Sonnerup's injuries: crushed right shoulder, broken left arm and hand, broken left leg, and severely injured right foot. Surgeons were able to amputate below Sonnerup's right knee, preserving more leg function than would exist in an above-the-knee amputation.
Friends and fellow graduate students at UW anticipated the first accommodation that Rolf needed upon discharge from the hospital. He left in a wheelchair, his right leg in a cast, a splint on his left arm, and right arm in a sling to cradle the crushed shoulder. Sonnerup could not return to his three-story home with the bathroom on the top floor and two sets of steps leading to the front entrance. Friends foresaw Sonnerup's situation. They rented and paid for an accessible apartment where Sonnerup and wife Linda lived for two months.
"This is a great department," Sonnerup said. "Here I was the classic starving graduate student with no money, and these people pooled their own money to rent the apartment." They also established teams of volunteers to bring Sonnerup scientific papers and help with library work. Paul Quay, Sonnerup's Ph.D. advisor, loaned Sonnerup his own laptop computer during this time.
Sonnerup spent the following month in rehabilitation at Harborview as an inpatient because it was the most efficient way to deal with the multiple physical problems. By December 1993, Sonnerup could return to his UW office a couple days each week. He spent a few hours in the office and the rest of each day undergoing additional rehabilitation at nearby university hospitals. Quay was very accommodating in going along with this schedule, Sonnerup said.
Administrative personnel expected Sonnerup to return in a wheelchair. They realized that the chemical oceanography building had never been made wheelchair accessible, as was required by the Americans with Disabilities Act. They moved swiftly to remodel a bathroom, install an automatic door opener on the entrance, and complete other modifications. When Sonnerup returned to the building, he could walk adequately and did not need a wheelchair. But the building is now accessible for future students, faculty, and visitors with disabilities.
Rolf returned to the university at a critical stage in a graduate student's life. Academic course work and comprehensive exams were done, and it was time to pick a dissertation topic. Sonnerup had been away from the university since April 1993. Much of that time had involved an expedition on the department's oceanographic ship, the Research Vessel (R/V) Thomas Thompson. The voyage ended in Sitka, Alaska, on July 1. Sonnerup remained in Alaska in July to help with a small commercial fishing business that he and Linda operated a few weeks each summer. The accident struck a few days after he returned to Seattle at the end of July.
"I was feeling depressed and was beginning to question whether I could move back into academic life as a graduate student," Sonnerup recalled. "Paul Quay gave me the gentle push I needed. He came by one day and asked how I was doing. I told him I was depressed, discouraged, and doing pretty awful. Paul said, 'Maybe it would be a good idea to be a TA [teaching assistant] this winter.' It was just the motivation I needed to get moving again." No accommodations were needed for Sonnerup's teaching.
Like many other chemical oceanographers, Sonnerup uses chemical "tracers," like the ratio of carbon-13 to carbon-12 in seawater, to study carbon dioxide uptake and other processes in the world's oceans. Their studies are critical in understanding global climatic change through the greenhouse effect. The oceans act as a "sink" that absorbs carbon dioxide produced from automobile exhaust, coal-fired electricity generating stations, and other sources. Industrial activity puts about 7 gigatons of CO2 into the atmosphere annually. Yet atmospheric CO2 concentrations are rising in a fashion consistent with emission of only about 3.5 gigatons. What happens to the remaining 3.5 gigatons of CO2? Some researchers believe that the oceans take up only 2 gigatons. What happens to the "missing" 1.5 gigatons? Chemical oceanographers want to determine with greater precision the oceanic uptake of CO2.
Sonnerup's dissertation research involves laboratory analysis of water samples, which is usually done by a lab technician hired under Quay's research grant. Rolf has difficulty standing for long periods because the pressure on the prosthesis causes discomfort in the injured leg. However, on occasions when Sonnerup works in the lab, he sits on an ordinary lab stool and can work in comfort for any required period.
Steep hills and many sets of steps on the UW campus make walking difficult. The impact of walking is transmitted from the prosthesis to Sonnerup's leg. About half of the resources for Sonnerup's dissertation are in a library across campus. So he usually saves work in the distant library for a day when his leg feels ready. Often, however, fellow students will mention that they're heading for the library and offer to photocopy articles or other material that Rolf needs. UW does provide a campus shuttle bus as an accommodation for persons with disabilities, but Sonnerup regards it as a back up, because his own approach works well. Likewise, as a personal preference, he chooses not to use a motorized scooter or wheelchair on campus. Sonnerup is considering the purchase of a manual wheelchair that he can use for outdoor festivals, concerts, and other events that involve extensive walking and standing.
Quay made a scheduling accommodation that gives Sonnerup several weeks of free time in July and August to earn money at commercial fishing in Alaska. Years ago, Sonnerup and his wife bought a permit that gives them the right to net salmon on a small segment of an Alaskan River. Rolf did not materially participate in the fishery once he entered graduate school in the summer of 1991 but has taken up the business again for financial reasons. Sonnerup said the money now is essential to pay out-of-pocket medical costs for a new leg prosthesis each year, which Sonnerup cannot afford on his salary as a TA. "I need to fish in order to complete graduate school," Sonnerup said. "It is that simple. Without Paul Quay's understanding and accommodation, I wouldn't be able to do so." At the fishing site, a hired assistant does most of the onshore labor. Sonnerup sits on a pontoon raft and works the nets.
Two major accommodations were necessary in Sonnerup's life away from UW: He and his wife moved to a single-level house and traded their standard shift car for one with automatic transmission. Sonnerup shifts his legs in the driver's seat so he can operate both accelerator and brake with his left foot. He decided against modifications that would put the accelerator on the left. Once again, it was a personal choice. Sonnerup wants to avoid getting so used to a modified car that he might be unable to drive an unmodified vehicle when traveling.
The accident has resulted in many changes in Sonnerup's leisure activities. He moved to Seattle from home in New Hampshire largely because of the Pacific Northwest's many opportunities for rock climbing and other outdoor activities. Rolf grew up in Hanover, New Hampshire, where his father was an engineering professor at Dartmouth College. He moved to Seattle in 1987, after getting an undergraduate degree in chemistry from Princeton University. Rolf worked for two years at environmental consulting firms in Seattle, helped Linda organize the fishing business, and then worked for two years as a carpenter. "I realized that I didn't want to spend the rest of my life as a carpenter and remembered liking geochemistry as an undergraduate." Graduate school was the obvious choice, and Rolf began the chemical oceanography program at UW in 1991.
Most weekends and vacations were devoted to rock climbing, hiking, and kayaking. Since the accident, Rolf has continued to kayak, which he can do seated and thus without stress on the leg. Rolf and Linda recently spent several days of vacation in sea kayaks on Puget Sound. He built the kayaks in a home workshop that friends set up after the accident. There, Rolf has rediscovered his love of carpentry and makes tables, chairs, and other furniture.
The next major career challenge will come when Sonnerup undertakes his first oceanographic expedition as a scientist with disabilities. In some respects, Sonnerup said, a ship like the R/V Thomas Thompson may provide the ideal work environment for his disability. Labs, berths, galley, and other facilities all are within reach without the long walks that cause leg discomfort. The vessel has handrails in the passageways and on stairways that Sonnerup can use for support. Whenever possible on land, he descends stairways by grasping the rails and partially sliding down. He foresees using a shower stool so he can sit and bathe with the prosthesis off and using the bunk bed in the berth. University oceanography departments are very conservative about permitting students or scientists on deck in bad weather. So on-deck safety in storms should not pose a problem, Sonnerup said.
"I don't think I'll need to worry about going back on a ship again," Sonnerup said. "I'm definitely less stable on my feet than the average guy. But ships are made with lots of rails and handholds. I think I'll do just fine." He noted, however, that shipboard data collection is not a mandatory activity for his career. Sonnerup expects to finish his Ph.D. dissertation late in 1998 and then serve as a postdoctoral fellow before seeking an academic position.
Rolf Sonnerup continues on course toward that career in science, thanks to accommodations from his university and major professor and support from his wife, friends, and other graduate students. He chose chemistry before the accident. And it turned out to be the ideal choice.
The obstetrician attending at Anne Barrett
Swanson's birth thought he saw hallmarks of a serious hereditary
disease. A newborn infant with fragile bones, a fractured skull,
and broken legs. His advice to her parents was blunt and
dismissive. This was a hopeless case involving profound mental
retardation in an infant who will never function in society.
Institutionalize the little girl immediately, and forget about
her. Have another child. If you're lucky, he observed, the next
one may even be a boy.
The pediatrician disagreed. He thought the baby looked alert and bright, and the obstetrician's prognosis was medically unfounded. Nobody knows how this child will turn out, he said. Take her home and do the best you can. Armed with their commitment to their child and their spiritual beliefs, Swanson's parents chose to step into the unknown and give their child the best life they could.
By any standard, parents and child did pretty well.
Swanson could read at age three. She wrote cursive at age four and played Mozart piano sonatas in contests in Chicago at age nine. She moved ahead of her age group in school, studied in a university chemistry lab while in high school, published her first scientific research paper in the Journal of the American Chemical Society as an undergraduate, earned a Ph.D. in biochemistry, did cancer research, taught college chemistry, became a university dean of science, and was named a prestigious Kellogg National Leadership Fellow-- among many other achievements. Born with osteogenesis imperfecta (commonly called "brittle bones"), which resulted in short stature, Swanson learned to devise creative accommodations to participate in various activities, from laboratory research to flying a four-seat Cessna. Anne is 3 feet, 7 inches in height, walks with a cane, and sometimes uses an electric scooter. Some of her accommodations are physical, like the elevated platforms that Swanson used for laboratory work and still uses when teaching a molecular biology course. Some of the most important, however, are cultural and attitudinal, such as "the Swanson technique" for job interviews.
As dean of the School of Natural Sciences at Sonoma State University (SSU) in Rohnert Park, California, Anne Barrett Swanson heads 130 faculty and staff with a $5.5 million annual budget. "SSU is not perfect, but this is the most architecturally accessible place at which I've ever worked or studied," Swanson said. "Most of the accommodations were in place before I arrived, and the campus continues to improve."
For instance, SSU has ramped building entrances, elevators, accessible rest rooms, close-in disabled parking, curb cuts, many automatic doors, and its own minifleet of electric scooters for on-campus loan to students, faculty, or staff members with disabilities. Many people at SSU use airport-type collapsible wheeled luggage carts to transport briefcases, books, and other materials to and from their cars. Swanson uses one as well, to protect her back, shoulders, and hips as she walks from her car to her office in Darwin Hall. She drives a car equipped with extensions on the accelerator and brake pedals and sits on a high cushion for good visibility.
Osteogenesis imperfecta, a problem of collagen structure, results in inadequate calcification of bone. It occurs in several forms, of variable severity among individuals. For Swanson, it caused numerous leg fractures during childhood and resulted in short stature and abnormal alignment of ankle, knee and hip joints. Walking long distances is difficult and uncomfortable, so she uses an electric scooter between buildings on campus. Within Darwin Hall, she uses her cane to walk from place to place. When there's time in her busy administrative schedule to teach a course in molecular biology, Swanson piles books, exam papers, molecular models, and other materials on a laboratory cart and pushes it to and from class.
Swanson teaches while standing on an elevated, step-up wooden platform, about 2 feet high, that SSU carpenters built to her specifications. "I can't get any taller," Swanson observed. "But I can raise the floor." The platform increases her visibility to students and provides comfortable access to the overhead projector that Swanson uses instead of a chalkboard. Her pre-made transparencies illustrate major points in a lecture, and Swanson adds detail as the lecture progresses or questions arise in class discussions. She puts photocopies of the transparencies on reserve in the library, which her students appreciate. The platform has nonskid steps, rails, and a bench where Swanson can sit if her legs tire. The platform is light, portable, and stores easily when not in use.
Swanson has used several platforms of a similar design, but of different heights, throughout her education in chemistry laboratory courses, as well as her graduate and postdoctoral research work in biochemistry, to provide access to laboratory benches and fume hoods. "The platforms were welcomed in my instructional and research laboratories because they enabled me to do lab work successfully," Swanson related. "The only 'problem,' if you can call it such, is that my nondisabled colleagues frequently wanted to use them, too!" She cited this as one example in which accommodations for individuals with disabilities benefit nondisabled people as well. Swanson uses a similar portable platform in her kitchen at home. Anne's husband of 27 years, David, a biomedical engineer, is 5 feet, 10 inches tall, and would be uncomfortable using lowered kitchen countertops, so this solution works well for them.
With a science dean's responsibilities in budgeting and planning, fundraising, meeting with students, recruiting new faculty, advising on tenure and promotion issues, helping faculty with grants, and ensuring compliance with safety and other regulations, 80-hour work weeks are not unusual. Swanson has learned to conserve her energy for activities that really count. Walking across campus to meetings several times a day is not among them. To get around campus quickly, Swanson uses her own electric scooter. It parks in her office, plugged in for a battery recharge, when not in use.
Many functions of a dean require Swanson to attend meetings and other events off campus, where she represents SSU in the community. Swanson meets with managers of Hewlett Packard and other high-tech industries in the area, gives speeches to business executives and city managers, and attends faculty retreats and other functions. "In the four years I have been dean here, all those meetings have been in accessible locations, including the industrial meetings," Swanson said. "Managers I have met with have been sensitive to accompany me via the accessible routes within companies or hotels. When addressing a group of executives in the community, the program arranger works with me and with the hotel manager to arrange an accessible podium and have the type of microphone and audiovisual equipment that I prefer. My experiences here have been delightful."
As a dean, Swanson also presides at ceremonial functions, including outdoor commencement ceremonies on SSU's idyllic campus north of San Francisco in the heart of the California wine country. Graduation always has taken place in an accessible area, "the commencement lawn," that has a concrete-paved, ground-level "stage" for the university's senior administrators, visiting dignitaries, and student speakers. SSU carpenters worked with her in building a step-up platform with two wheels on one side. Swanson stands on the platform-- in full academic regalia, of course-- behind the official SSU podium with university seal to confer degrees on the science and math graduates in her school. One of her colleague deans helps by discretely rolling the platform up to the podium and microphone when the time comes for Swanson to speak. Afterwards she walks with her cane to the same low table used by other deans and hands out diplomas. Each of the five SSU schools has a descriptive banner. Each school honors an outstanding graduating student by selecting him or her as banner carrier. "SSU rigged up a pole holder last May so that one of my graduates who uses a wheelchair could be the banner carrier for our School of Natural Sciences," Swanson said. "She was absolutely delighted."
Swanson has developed strategies for travel to scientific meetings and other professional conferences. When making travel arrangements, she asks her travel agent to request wheelchair assistance at airports, especially for connecting flights. She walks on and off the aircraft using her cane and a wheeled cart to pull carry-on luggage. She finds the wheelchair assistance helpful in conserving her energy for her professional work. Airport staff carry her luggage up and down aircraft steps at airports without jetways and help claim her checked baggage and find taxis. When presenting a paper at a conference, Swanson notifies the professional society and the appropriate program arranger well ahead of time about the accommodations she will need, such as a lowered podium or ramped access to the presenters' stage. She has found that large hotels and convention centers often have these items in storage and will install them upon request.
Swanson's travel strategies have worked well for both domestic and international travel, including travel to developing countries. In 1990 Anne was awarded a prestigious Kellogg National Fellowship. Funded by the W. K. Kellogg Foundation, this program seeks to identify and develop emerging leaders to work creatively across the boundaries of disciplines, cultures, and nations. One of Swanson's projects through the fellowship program involved a study of the fledgling disability civil rights movement as it is emerging at the grassroots level among people with disabilities in various countries and cultures. For this study, she traveled to Sweden, Finland, New Zealand, Costa Rica, Mexico, and Belize. A second project through her Kellogg Fellowship took her to the Middle East to work in conflict resolution facilitation with groups of Israelis and Palestinians. "One needs to think differently about accessibility and accommodations in developing countries," Swanson said. "In the United States, we tend to think about accessibility in terms of architecture and technology. In developing countries, accessibility is usually about people helping people in order to get where you want to go." Swanson has found that people in other countries are usually happy to lend assistance to a person with disabilities, as long as they are approached with respect. "If you treat people with respect, they usually are respectful in return. That has been my ticket to traveling anywhere. And, besides, I think it is the right way to live in the world."
Swanson traces her interest in science to frequent childhood hospitalizations for leg fractures resulting from osteogenesis imperfecta. Her parents stopped counting after 25 fractures when she was still a young child. During one hospitalization, a nurse carried Anne down to the clinical laboratory to demonstrate how blood was centrifuged and other lab tests were conducted. The lab was a new world that fascinated the four-year-old child. Later came the influence of "Hurricane Elsie," the "most incredible junior high school science teacher." Elsie set aside the textbooks, which she regarded as boring, and taught science using demonstrations, hands-on work, and special projects with a virtuoso style that hooked Anne on a career in science. In Swanson's case, recurrent bone fractures ended during puberty, when her bones began to harden. Also during adolescence she underwent a series of corrective surgeries to further stabilize her leg bones.
Swanson began school in her home town of Coal City, Illinois, where the superintendent and principal believed in mainstreaming children with disabilities long before that term entered educational jargon. "Only in my adult years did I realize how lucky I had been," Swanson said. The elementary school was new and all on one floor. Her fellow students in the small town were accepting of her, and Anne quickly got the reputation as a brilliant child. When Anne was at home recovering from a fractured leg, schoolmates dropped by with homework assignments. Teachers sometimes came to her home to help with a lesson. Anne's parents, and her maternal grandmother with whom they lived, never let her disability interfere with her schoolwork, piano lessons and practice, and other activities. "Their attitude was understanding and supportive," Swanson recalled. "But they would never let me get away with excuses. They would say, 'Yes, you do have a broken leg right now, but you also have an assignment to do for school.' As soon as I was well enough, I would return to school using a specially designed walker that my father had a friend build for me."
In the local high school, all the labs had low benches and all students did lab work while seated. But it was an old two-story building with no elevator. "Physics was taught on the second floor," Swanson said. "I worried about how I would ever get to physics class. The high school principal proposed the simplest solution. The physics class was moved downstairs to a ground-floor science lab for the year I took physics." Swanson added: "I've always found that attitudes are most important. If teachers' and employers' attitudes are positive and open-minded, we can always find ways of doing things. The most helpful approach is 'let's work together to come up with a solution'."
The clincher for Swanson's career came at age 15 when she was selected to participate in a National Science Foundation (NSF) summer program for talented high school students. She studied laboratory chemistry at Northern Illinois University (NIU) in DeKalb. "That summer experience was especially valuable because it showed me what I'd need in order to do chemistry successfully in a university laboratory with high lab benches." Swanson began designing the platforms she would use for lab work throughout her undergraduate education as a chemistry major at NIU and later in her graduate study at the University of Wisconsin at Madison, where she earned a Ph.D. in biochemistry. "My experience was valuable in another way," she noted. "Those professors gave me a chance, and I did well. It gave me some credibility early in my education and demonstrated that I was capable of doing university-level chemistry laboratory work."
Nevertheless, in her senior year of high school, when Swanson and her parents visited colleges, she met with "a surprising variety of responses" from admissions officers and department heads. Swanson recalled, "This was my baptism by fire, the first time I recognized the discrimination that I faced. Remember, this was the era before legislation existed to protect civil rights of persons with disabilities. In spite of my straight-A average, high SAT scores, and summer lab experience, some schools flatly refused to allow me to enroll in any lab courses. At one university, my parents and I were laughed out of the admissions office when I declared my intention to major in chemistry. On the other hand, several other schools welcomed me with open arms."
Anne chose to return to NIU, where she had been welcomed in the sciences. Her education occurred in the era before legislation mandated accommodations, and the absence of ramps and elevators created architectural barriers for students with disabilities. Anne's mother went to college with her at NIU, drove her to class, shoveled a path through the snow in the harsh winters, and helped her up flights of stairs in buildings with no elevators. During that time, her mother and father were together only on weekends. In her second year of college, Anne met David Swanson in calculus class, and the two were married just before the start of their senior year. "Then Mom and Dad returned home together. David drove me to class and kept a snow shovel in the back seat to shovel a path for me through the snow." Swanson graduated from NIU with highest honors, a major in chemistry and a minor in mathematics, having won awards for both the outstanding freshman and outstanding senior in chemistry. The pair agreed to attend the same graduate school, Anne in biochemistry and David in biomedical engineering. Both needed assistantships and accepted offers of financial aid from the University of Wisconsin at Madison.
The "Swanson interview technique" developed as Anne was applying for admission to various graduate schools. Like many other people with disabilities, she usually avoided discussion of her disability in letters of application and other preliminary contacts. "I'd arrive at the department chairman's office, his secretary would open the door and announce that his next appointment had arrived. He'd look up from his desk, his jaw would drop in surprise, and he'd sit there with his mouth open--'uh... uh'--not knowing what to say or do." Swanson learned to take the initiative and take control of the interview in a helpful way, with an approach something like this:
"Hello. I'm Anne Swanson, an applicant to your doctoral program. You're probably wondering how I do lab work. I'd like to explain it to you, if I may. In the laboratory I stand on a step-up platform which raises me to a height appropriate for working at the bench...."
Swanson said the approach may sound manipulative. But in situations in which there is such an imbalance of power and uncertainty about what questions to ask, it is beneficial for the applicant to take the initiative.
Her doctoral research focused on the metabolism of the trace element selenium and its role as a component of the enzyme glutathione peroxidase, which helps protect cells against oxidative damage. During her doctoral program, Swanson worked as a teaching assistant (TA) for a graduate biochemistry course and loved it. After completing her Ph.D., Swanson accepted a postdoctoral position at the McArdle Laboratory for Cancer Research at the University of Wisconsin. She did research in chemical carcinogenesis and the metabolism of certain naturally occurring precarcinogens to the putative proximate and ultimate carcinogenic compounds that bind to DNA.
Swanson eventually became dissatisfied doing full-time research, longed for more interaction with people, and chose to return to the teaching that she loved so much as a TA. She accepted a faculty position at Edgewood College in Madison, where she taught chemistry and biochemistry, won tenure, and became department chair. At Edgewood, she used her step-up platforms to teach students in lecture halls and in laboratory classes. Mindful of laboratory safety, she established a "buddy system" among her students in lab classes and emphasized proper safety procedures. Drench showers were made accessible by a simple lengthening of the pull chain. The college installed eyewash systems that could be adjusted to any convenient height. Swanson was sometimes asked by faculty from other universities how her students responded to her disability. "On the first day of class, I would introduce myself and tell the students a little about me, encourage them to tell me something about themselves, discuss my objectives and their expectations for the course, and then move on to the adventure of learning chemistry. My students never treated my disability as any big deal."
In 198586 Swanson took a leave of absence from her faculty position to work at the NSF in Washington, D.C., as associate program director in what is now called the Instrumentation for Laboratory Improvement Program. She won management awards for her work at NSF. Increasingly attracted to administration, she accepted a position in 1988 as associate academic dean at the College of St. Catherine in St. Paul, Minnesota. In 1992, she and David moved to California, where Anne became dean at SSU. Swanson no longer avoids mentioning her disability in letters of application. "For a leadership position, I point out in my initial letter that as a result of my lifelong experience with a disability, I have learned to develop creative solutions and effective management strategies. I have experienced prejudice firsthand, and I respect the richness and creativity that are brought to life in organizations when a diversity of people, perspectives, and life experience is sought out and valued."
Life for Swanson means more than work, representing SSU in the community, traveling around the world, visiting family and friends, spending time with David, and taking care of their four cats. She volunteers her time as an advocate and mentor to expand opportunities for people with disabilities, especially through the American Chemical Society Committee on Chemists with Disabilities and the American Association for the Advancement of Science Project on Science, Technology and Disability. She remains a pianist, despite the lack of time for practice. Her Steinway grand piano has a modified lyre, foot pedals, and bench. As a member of the International Wheelchair Aviators, Anne sometimes dreams of finding time to resume flying lessons. She got her Federal Aviation Administration student pilot permit shortly before she became a college administrator and was doing well with flying lessons in a modified cockpit. The time crunch in her professional life has put the lessons on hold.
Anne Barrett Swanson's accomplishments provide a truly apt response to the obstetrician's pessimistic assessment at her birth. Some hopeless case! As her former student Joanne thanked her after graduation, "You didn't teach us only about chemistry, Dr. Swanson. You also taught us about life."
"If you're fortunate enough to get one of
these applicants, hire."
Ronald A. Nieman, director of the Nuclear Magnetic Resonance (NMR) Laboratory at Arizona State University (ASU) in Tempe, would offer that advice to any employer considering an applicant with a physical disability. Nieman believes that a person with disabilities who has made it to the point of being a job seeker "is likely to be very successful, creative in solving problems, and competent in ways that you seldom find in other job applicants."
Nieman adds that in many areas of modern science, these attributes are more important for success than physical ability. Yet Nieman said employers often overlook these traits. Caught up in the white-coated, bubbling-beaker stereotype of scientific activity, employers overestimate the amount of physical ability necessary to work in chemistry and thus the accommodations needed for employment. "I don't see any physical disability posing a serious impediment to a career in chemistry," he says.
Nieman knows. He has been disabled since childhood from KugelbergWelander disease, a form of muscular dystrophy sometimes called juvenile spinal muscular atrophy. The condition involves a degeneration of nerve cells in the spinal cord that causes muscles to weaken and waste away (atrophy). Nieman is unable to stand or walk and works from a wheelchair. He also experiences muscle weakness in the arms and hands. The symptoms began at age three, took away his ability to walk by age seven, and helped him immensely in preparing for his career in science. After entering the University of Colorado at Denver at age 15, Nieman went on to graduate school, began a postdoc, and developed one of the country's largest NMR facilities.
How did the disability help? Nieman said it taught him how to solve problems without getting frustrated; foresee obstacles and discover, test, and implement ways around them; organize each workday for most efficient use of time; share tasks; and empathize with other people while helping them solve problems. "These are almost universal lessons for people with disabilities," Nieman said. Helping students and faculty plan and conduct NMR analyses accounts for much of Nieman's typical work day.
NMR is one of chemistry's most important tools for analyzing and observing the structure of matter. It can help identify unknown chemicals, allow scientists to visualize the molecular structure of different materials, and provide other information. A variety of scientists use the ASU facility, including geologists, geochemists, engineers, materials scientists, plant physiologists, molecular biologists, biochemists, physical chemists, and inorganic chemists.
"I develop the facilities; install, maintain, and upgrade instrumentation and computers; develop software; train faculty and students in routine use; and collaborate with faculty on research projects," Nieman said. "I also develop course materials in NMR and chemistry, participate in conferences, manage personnel, help seek funding for research and teaching programs, participate in administration, and much more."
ASU faculty members recall several reasons why Nieman got the job as NMR lab director in 1982. When the previous director changed careers, ASU conducted a national search for a replacement. Nieman then moved from a postdoctoral position at the University of California at Santa Barbara back to a temporary post at his alma mater, ASU.
One reason was that he could do the job, which involved its share of physical challenges. NMR spectrometers are bulky instruments. Samples must be prepared and placed in a tube with an electronic probe inserted inside. The probe then must be adjusted for each sample. Nieman could do, and sometimes did do, all of this himself. For inserting the sample tubes into the spectrometer, for instance, he used a lasso-like device that resembles a snake catcher's noose. It is a rod rigged with a loop of rope that can be tightened around an NMR sample tube to lift it to the top of the spectrometer. The instruments generate intense magnetic fields, so Nieman switched to an aluminum wheelchair. The electric motor can be detached in the lab and quickly reinstalled for trips outside.
In most instances, however, students and scientists want to learn how to use NMR themselves. Nieman accommodated their wishes in a way that also better accommodated his disability. He let them learn by doing, while he directed. The approach relieved Nieman of manual labor as it enhanced their learning. Nieman also does less hands-on repair and troubleshooting work on the equipment than some other NMR experts. But he regards that as a more efficient use of his own time. "I often can identify the problem and then let the electronics people fix it."
Nieman's disability has fostered other innovations. At first, he supplemented direct instruction with detailed hand-outs and lists of procedures. Then the lab began making that and other information available on a World Wide Web site that Nieman developed. He envisions using virtual reality technology for training students to operate NMR instruments. "If people come to me for help now, it clearly is for problems that they can't solve on their own by accessing the Web site and using the instructional material."
The automation of NMR makes it possible for people with very severe disabilities to be NMR spectroscopists. Nieman estimates that 90 percent of NMR already is automated. Sample preparation remains the major hands-on task. It involves dissolving a sample in solvent and inserting the sample tube and probe into the instrument. "With someone in the lab to prepare the sample, a scientist needs only to log onto a Web page and run the analysis."
ASU also picked Nieman as director because he was an early advocate for the technique and recognized its future importance in chemistry. He had the reputation as a facile communicator who could write effective grant applications. Grant writing was among his assignments as a postdoctoral student at ASU. Nieman, who regards mentoring as a basic but often-ignored faculty role, credits one mentor, John Cronin, with helping him develop grant-writing skills. "I learned the essence of university-based science from Cronin," Nieman recalled. "If you don't get grant money, you won't do any science." Indeed, Nieman was successful in expanding the ASU facility, which now is one of the largest in the country. The $2.5 million of instrumentation includes four NMR spectrometers and about 20 high-performance computer graphics workstations.
ASU made policy changes to accommodate Nieman's disability, including a fundamental overhaul of the system under which he was employed. Universities define certain employees as "technical support staff." When Nieman came onboard, ASU had problems attracting and keeping high-level people in these positions. The university gave Nieman the freedom to design his own job to accommodate his physical limitations. He changed it from a service role in which the staff ran everything to a role in which staff taught students and faculty to obtain their own results. "This was a major source of consternation to users at first," Nieman recalled. "But I simply couldn't do all this work, and it would have been impossible to achieve full use of the facility without spending huge amounts of money to hire more staff. It freed my time to educate students, seek funding, and concentrate on developing the facility. In the process, it removed most of the physical impediments I faced." Staff also assumed a more collaborative role with faculty researchers. He fostered other changes that benefited able-bodied employees, including staff coverage under faculty rules for academic freedom, tenure, and ability to teach and participate in grants.
"The system has had its share of growing pains," Nieman said. "However, it provided our faculty with a degree of support that many other students don't have, and played a major role in our chemistry department moving up from 150th or so in the late 1970s to somewhere in the top 30 to 40 of departments today."
In addition to the aluminum wheelchair, Nieman has several other accommodations for his disability. He carries a standard portable telephone on his lap to avoid constantly wheeling back to his desk. Desk and tables in the office are adjustable to wheelchair height. Nieman uses short lateral files and keeps frequently used books on the lower shelves of bookcases. To minimize file keeping, he scans many paper documents directly into the computer. ASU modernized and renovated office space and restrooms near the NMR facility, and the building is wheelchair accessible. Nieman required relatively few accommodations and says that the university does not incur any additional expense as a result of his employment. But he regards ASU's readiness to make accommodations as the single most important accommodation for his disability. ASU, for instance, helped to design and patent a wheelchair that could be used in a clean room environment where electrical engineering students fabricate their own microprocessor chips. The chair was built to accommodate a student.
Universities can minimize the cost of accommodations by tapping a preexisting resource that Nieman said is often overlooked: The machine, electrical, and carpentry shops that help build research equipment. "There's no reason why these resources can't be used to make modifications for students and faculty with disabilities," Nieman said. "The staff is already familiar with labs and instrumentation and can be very creative in coming up with solutions." The ASU shops, for instance, have made nonmetallic parts for Nieman's NMR wheelchair and helped in the design of accessible laboratory space.
Nieman drives eight miles to work in a standard car equipped with reduced-effort power steering and brakes. He does have difficulty getting into and out of the driver's seat. Linda, his wife, who is an elementary school teacher, helps him at home. A student meets Nieman in the parking lot each morning and evening and helps him out of the car.
No single work-related problem is more serious than the Phoenix area's lack of an adequate regionwide public transportation system for people with disabilities, according to Nieman. The Dial-A-Ride system would pick him up at home in Phoenix but take him only as far as the border of Tempe. There he would have to telephone Tempe's Dial-A-Ride system and wait up to one hour to be picked up. Transit time each way would be two to three hours.
When Nieman was driving to work in 1989, an inattentive driver smashed head-on into his car. Nieman suffered a broken neck and spent eight months wearing a halo brace with four pins stuck into his skull to immobilize head and neck. At the hospital, he declined the standard stainless steel brace for a nonmetallic brace. "You tend to overcompensate for the disability," he said. "I knew I'd want to return to work as quickly as possible, and I did."
Nieman credits the wheelchair with teaching what he regards as his most valuable life skill-- the ability to make friends. "After being in a wheelchair, you see people struggling and you can empathize with them and open dialogues. You can raise questions that other people are uncomfortable speaking about. You help people. You make good friends fast."
Hundreds of friends fill Nieman's life away from ASU, which centers on the "Nieman Folk Hotel & Spa & Home for Wayward Musicians." Ron and Linda host musicians from all over the world, who play at events ranging from Casey Moore's Irish Pub in Phoenix to the 900-seat Scottsdale Center for the Arts. Ron and Linda themselves are accomplished musicians who entertain small audiences at local dances and small pubs with their traditional and other tunes. Linda plays the mandolin and Ron an instrument with a 3,000-year tradition called the hammer dulcimer. Every Monday evening, friends and fellow musicians flock to the Nieman home, clear aside the furniture, and hold the Arizona equivalent of an old-fashioned New England barn dance.
Few of them even know what Ron Nieman does in his other life-- let alone how he has made a physical disability as irrelevant to doing good science as it is to playing good music.
