INFORMAL SCIENCE AND POPULAR CULTURE
The AAAS has known for a long time that, in the early education of a scientist or engineer, school may not be the most important factor. School is always there, of course, but out-of-school experiences, Girl Scouts and Boy Scouts, television, travel, and precollege summer programs, can spark an interest much deeper than a textbook or classroom discussion. ENTRY POINT! students, whose intellectual abilities were not always recognized and who sometimes could not participate in every class activity, competed in wheelchair basketball, wrote poetry, joined school bands, built models, played video games, and explored computers at home. They went to the movies, set up home darkrooms, developed their own web sites, entered science fairs and soap box derbies, read incessantly, and played math games in the car while being driven to therapy. The students, some of whom would not have been able to enter college 25 years ago, attended Space Camp, raced remote-controlled cars, followed math and science programs on television, participated in academic contests, and became problem solvers by taking apart household appliances and putting them back together again and again and again.
Interviewer: "When did you first realize that you wanted a career in computers?"
Bossolina: "Probably in middle school or high school. A few of my classes in the early 1990s had computers. They were very basic machines then, compared to today. But I was really drawn to them. As I think back, my interest never really began with a computer. It started with video games. Blaster was the first, probably in 1985. Pac-Man. Lots of others. It seems like I've been around them my entire life, and my interest just grew and grew from there."
For Chris Bossolina, the interest expanded from video games to desktop computers to the UNIX operating systems used in computer workstations in business, industry, and research settings. With an initial nudge from "that kind good guy," Chris looked forward to a degree in management information systems (MIS) at the University of Arizona (UA) and a productive career.
Just as video games fostered awareness of the capabilities of computers, the demands of school made Chris understand that the computer could be a useful accommodation for his physical disability.
Chris has a central auditory processing disorder (CAPD). It is one of the so-called invisible disabilities that can be especially difficult for parents, educators, and employers to understand. The individual with a CAPD can hear. Understanding is the problem. Hearing is normal, but the brain has a problem processing and using input from the ears. Imagine a person with normal vision and a reading disorder. People with CAPDs have normal hearing but problems comprehending speech. It may take them longer to comprehend speech, sequence sounds, understand speech in background noise, or have other difficulties. Children with CAPDs typically have normal or above-normal intelligence, yet perform way below their ability at school.
The diagnosis for Chris came in 5th grade in Ridgeway, NJ. "I had low grades and test scores and was an extremely slow reader," he said. "I was reading at only a 1st-grade level. A Resource Room teacher suggested that I get tested, and that got me diagnosed." Tests showed that Chris had a CAPD that affected comprehension of speech, as well as reading and writing. "When someone speaks, you catch only part of the words, and have to guess, interpolate for the rest."
With an Individualized Education Plan* and supportive teachers and parents, Chris made progress academically. Mom and dad, Georgette and Tony, always encouraged Chris to go to college and emphasized the importance of a college degree.
When Chris searched Lovejoy's College Guide, he looked not just for schools with good academic standing, but those with good programs for students with learning disabilities. He chose UA, attracted by its Strategic Alternative Learning Techniques (SALT) program. Chris first learned about UA when he attended a learning disabilities fair. Georgette read about the fair and encouraged him to attend. By the time he and his mom arrived, many of the colleges had closed their booths and left. However, the UA booth was still staffed. "I was intrigued," Chris said. "I talked to the individuals staffing the booth and really liked what I heard."
SALT provided tutoring, counseling, and other individualized services for students with learning disabilities. Chris credits skills he obtained through the SALT program with a key role in his success at UA. Tackling those MIS courses also took a great deal of hard work to keep pace with the rest of the class, he acknowledged.
"For college-bound students, I really recommend that they investigate all schools, not just those in close proximity to their homes," Chris said. "I firmly believe that institutions on the west coast have better learning disabilities programs than those on the east coast," Chris said.
He also advises flexibility and persistence. "Be like the ocean," Chris said. "Be free, always able to change, but keep hitting the shore. And just like the ocean, when someone puts up a barrier, take it down."
SALT tutoring and other services were the only accommodations Chris needed, and he encountered no barriers or negative perceptions at the university.
"In fact, many of my professors were intrigued by CAPD and wanted to learn more about it themselves."
Chris learned about the ENTRY POINT! program in 1999 from his SALT counselor, who encouraged him to apply. He spent that summer interning at NASA's Ames Research Center in Moffett Field, CA. There, he got experience in wind tunnel experiments simulating high-speed aircraft flight and also helped design a World Wide Web page for NASA's Quest project. Quest provides support and services for schools, teachers, and students to fully utilize the Internet and its underlying information technologies, as a basic tool for learning.
A second ENTRY POINT! internship at IBM's Santa Teresa facility in California in 2000 really brought Chris's career plans into sharp focus. He got experience installing Sun Microsystems' Solaris operating systems. These UNIX-based master control programs are widely used in server computers on the Internet.
"The IBM experience made me discover what I wanted to be and how to achieve it," Chris said. "It helped me start a career and life for myself - one that would have been a little difficult on my own. Because of the learning disability, I did not have the grades to compete with many other students. ENTRY POINT! gave me a break in competing with others; it leveled the playing field and opened a door. I was able to show not what my grades were, but what I can do."
Chris will join IBM as a permanent employee and hopes to work on a master's degree in computer science.
Interviewer: "Chris, without ENTRY POINT!, what path might you have taken?
Bossolina: "A path that I fortunately did not have to take."
*The Individualized Education Plan (IEP) is the cornerstone for the education of many children with disabilities. It is a written statement defining the educational goals for the school year and the special services that will be provided to meet the goals. IEPs are individualized to meet the unique needs of each child with disabilities. They are required under the federal Individuals with Disabilities Education Act (IDEA).
"Be like the ocean," Chris said.
"Be free, always able to change, but keep hitting the shore. And just like the ocean, when someone puts up a barrier, take it down."
Computer-assisted real-time captioning (CART) is the live-and-in-person counterpart to the closed-captioning technology that long has given individuals who are hearing impaired access to television programming. CART is ideal for classroom and other lecture settings in which the presenter often turns away from the audience, speaks rapidly or indistinctly (making lip-reading difficult), or uses unfamiliar technical terminology.
A captioner listens to the lecture and keyboards the words on the paddle-like keys of a stenograph typewriter, like those used in courtrooms. The stenograph requires fewer keystrokes, enabling the captioner to type up to 250 words a minute. The words can be projected on a large screen for the entire classroom or audience or routed to the laptop computer of a person who is hearing impaired. Since the lecturer's words appear almost immediately, the individual who is hearing impaired can participate in the group discussions. The words also can be saved in a text file, becoming verbatim study notes.
Kelly Halacka did well academically without CART during her first year as a bioengineering major at Case Western Reserve University (CWRU) in Cleveland. Kelly listened to lectures with an FM system, which captures speech with a microphone, sending the signal through the air via FM radio waves to a personal receiver. But as courses became more challenging, Kelly sought the newer technology. Her school has not yet provided the technology to Kelly, hence her family provided it themselves. Her experience at CWRU has taught her the importance of understanding her needs in the classroom - she discovered needs that she never could have anticipated based on her academic career up through high school. Kelly remains hopeful that CWRU will soon recognize its obligation under the ADA to provide her with the technology that will give her equal access to the same information as her peers.
"I just learned"
Going to college was a given for as long as Kelly can remember. She was born in 1980 in Livonia, MI, just outside Detroit. The family moved from Livonia to Northfield, MI, to Maumee, OH, near Toledo, and finally to Bloomfield, MI. Dad was an engineer for Daimler Chrysler, and mom worked for ArvinMeritor, a supplier of automobile components. Like her older brother (who holds a master's degree in engineering from the University of Michigan) and sister (a student at Hillsdale College in Michigan), Kelly was born with a hearing loss, which was diagnosed at 15 months of age. Kelly attended a Montessori preschool, and another preschool for children who are hearing impaired, and then attended mainstream schools.
"I just learned in school," Kelly said. "I did not have interpreters. I never felt different. I did not have tutors. I always used an FM system. I was a big reader. When they showed videos, the teacher gave me a script. At home, with two other children with a hearing loss, we had everything necessary, the technology and knowledgeable and supportive parents. At home, we had captioned TV, FM systems, a captioner, and phone amplification, so we all learned to use the regular phone, a TDD, vibrating alarm clocks for wake-ups, and lots more."
Most of Kelly's friends were classmates from school. She had no outside adult role models who were hearing impaired, and no real peer mentors. Kelly's closest childhood friend, Amanda "Mandy" Fleming, also had a hearing loss. A framed photograph of the two on Kelly's desk bears the inscription, "Friends Forever."
Summers and space camp
Every summer, Kelly went to regular sleep-over camps and participated in activities like swimming, arts and crafts, and hiking. One summer, she went to a weeklong camp for students who are deaf and hard of hearing, operated by the National Technical Institute for the Deaf at the Rochester Institute of Technology. The summer experience with the biggest positive impact on Kelly's aspirations for a science career, however, came between sophomore and junior year in high school. She attended U.S. Space Camp near NASA's Marshall Space Flight Center in Huntsville, AL.
Kelly and other students had plenty of fun and excitement with activities, such as experiencing weightlessness and the 4-G force of a space shuttle liftoff in a simulator and a long-duration space flight (six full hours) in another. In addition, the students learned leadership and influencing skills by working in teams on training and other activities.
The Space Camp experience led Kelly to send an e-mail to Elizabeth Walden, a staff member at the NASA Johnson Space Center in Houston. "She encouraged me. And she put me in contact with Pamela Melroy, an astronaut. Someone at Johnson told me about the ENTRY POINT!/ACCESS internship program. I knew I was not old enough yet and had to wait until college to apply. But it made me look forward to college all the more and the chance to actually work at NASA."
NASA opened its doors to Kelly three times. She did one internship in the summer of June 1999 at the Glenn Research Center near Cleveland, OH. She helped design and build an electronic circuit that converts intensity readings from a high-temperature sensor into displayed temperatures. In the summer of 2000, Kelly worked for a NASA contractor at Johnson. "The job at NASA was my first paid job except baby sitting," Kelly pointed out. "I was a little nervous at first, but the NASA people made me feel comfortable, and I gained confidence fast." And in January 2001, Kelly returned to Johnson as a co-op student, working with some of the same scientists she had known the previous summer.
Kelly remembered several ways in which her parents encouraged her to be independent. At age 13, for instance, Kelly and her best friend Mandy were selected as participants in the People to People program's Student Ambassador program and traveled during the summer to Italy, Austria, and Hungary.
"From age 14 on, my parents let me go almost anywhere I wanted. Mandy and I always went together. I also was big on sports - competitive swimming, soccer, basketball, volleyball, and skiing. I took 12 years of piano and played in recitals. In school, I played clarinet and alto sax in the band. I was active in lots of clubs, too. Students Against Drunk Driving, the National Honor Society, environmental organizations."
Kelly recalled two especially influential adults aside from her parents. They were Janet Gilbert and Shannon Williams, teacher consultants who worked with students who are hearing impaired in middle school in Oakland, MI. Both helped reinforce the message Kelly had received all her life at home - that a hearing impairment would be no barrier to success academically and in a career. Patricia Higgins, Kelly's high school counselor, reinforced the idea of college and helped her apply to schools with good academic programs and campus environments that welcomed students with disabilities. She visited several schools, including Notre Dame, Johns Hopkins, and Boston College, before picking CWRU, where she is a biomedical engineering major and an English minor. She will receive her B.S. in engineering in 2003.
"I've become a good self-advocate," Kelly said. "My mom taught me that. For instance, one time I needed extended time for an engineering exam. I confronted the professor directly. This was the first time I had a teacher who had a real problem with my disability, at least the first time that I personally had the experience. I managed okay."
Kelly said that self-advocacy was one of the key skills, in addition to perseverance and hard work, that she learned in childhood and that proved valuable as she advanced through school and toward a career.
Joshua: Shall we play a game?
The Josh in the movie connected with the Josh in real life.Joshua Philip Karch already was on the science career track when he saw War Games. But he remembers it as a key factor in consolidating long- standing interests in science and engineering.
"I was the little scientist for as far back as I can remember," Joshua said. "I still have a piece of paper that I wrote on at age six. Know what it said? 'I want to be an electrical engineer in Israel and the United States.'"
And he still has childhood files - written in his own secret code - describing potential inventions. Josh wanted to know exactly how mechanical and electronic devices worked, and he was constantly taking things apart and putting them back together. He built motorized pencils that spun on their axes like a mini-tornado, radio-controlled airplanes and cars, and motorized roller skates, and he used the starter motor from an old lawn mower to make a motorized skateboard.
Favorite reading material? World Book Encyclopedia, which he used as a resource in making some of the devices and pursuing about two dozen (thousand?) childhood hobbies, many of which he still pursues today. Among them was photography, which led Josh to set up his own home darkroom for developing and printing photographs. One school science fair project was an assessment of the role of different gases in the greenhouse effect. Josh grew houseplants in a sealed aquarium and then measured the temperature-altering effects of gases released inside - including the chlorofluorocarbons in a can of Freon. Other hobbies included circuit design, radio-controlled airplane construction, all kinds of tinkering, and travel.
There were family role models. Granddad was a mechanical engineer. Dad, a physician, was interested in astronomy and even built an observatory in the backyard. And informal science played its role. One movie that left a big impression was The Philadelphia Experiment.*
War Games was another. "The name 'Josh' made the movie very personal. I really enjoyed all of the toys and gadgets in the movie, and I think the story may have played some subconscious role in bringing me toward science."
The six-year-old's career goals definitely have become a reality. Josh graduated in December 2000 from Washington University (WU) in St. Louis with a degree in electrical engineering. He eventually plans to obtain an MBA and start an engineering firm in Israel and the United States.
Like Josh in War Games, an unflinching determination to win the game turned out to be an essential trait for the Josh in real life.
At age six, he was diagnosed with Obsessive Compulsive Disorder (OCD). OCD is often a chronic illness in which the individual experiences intense, recurrent unwanted thoughts (obsessions) or rituals (compulsions) that cannot be controlled. Rituals such as counting, walking on cracks, or hand washing are done in order to relieve stressful and uncontrollable thoughts. Left untreated, obsessions and the need to perform rituals can take over an individual's life. He also had Attention Deficit Disorder. At 16, he was diagnosed with Tourette syndrome, an inherited neurological condition that can involve repeated involuntary movements and uncontrollable vocal sounds, such as barks or yelps, called tics. In some severe instances, persons with Tourette may also suffer from Coprolalia, a disorder that causes the affected to blurt out cruel and inappropriate phrases and curses, many of which are unintended.
Attending college always had been a given for Josh. "My parents instilled this in me," he said. "I grew up in a household with high standards. We were expected to get things done, do our home work, and take responsibility." Josh picked WU, which an older brother had attended and loved. The Disabled Student Services office arranged several accommodations for Josh, including a single dorm room (a necessity in order to avoid the distractions that can trigger tics), a private test-taking location (again, to limit distractions), and extended time to complete tests.
One of his biggest challenges was meeting people for the first time - individuals unfamiliar with Tourette syndrome who are baffled at why someone is making inappropriate sounds or offensive comments. Josh's solution was self-advocacy and public education. When another student asked that Josh be kicked out of class for barking, Josh immediately stood up and explained the symptoms of Tourette syndrome. He also created a personal web page (http://students.cec.wustl.edu/~jpk1/tourettes. html), "An Encounter with Tourette Syndrome," which discusses the disease and his own experiences. The web site became an accommodation, a tool, for dealing with Tourette. Consider the following passage:
It's the very first day of new classes, you're all nervous about your future, sitting next to people you don't know and probably never will. Class begins. All is silent within the classroom. Then, from out of nowhere, from out of the blue comes a yelp so piercing it makes your stomach churn faster, as if it hadn't been churning fast enough out of apprehension of the class. "Why did that jerk make that noise?" You ask yourself. What's his problem? What right has he to be in this class? He barks again, and again. Almost everyone in your class is beginning to feel the same feeling right now. Maybe you should complain to the professor. Remove him from the class.
Josh often referred people to the site for further information on the disease.
It got plenty of traffic - so much that Josh had to remove a link to his own e-mail account for lack of time to respond to all the messages.
Josh discovered the value of that same up-front approach in the workplace in 1998, when he landed an ENTRY POINT! internship at NASA's Stennis Space Center in Mississippi. "People with disabilities have the option of withholding information about the disability," Josh pointed out. "But by being open, you immediately gain more respect among your managers and co-workers, and that's the key to advancement. Don't withhold information about your disability, but don't overlook explaining your creative solutions for working with the disability." In addition, Josh recommended that "persons with disabilities should be given the chance to personally explain the nature of their disability, rather than having a counselor or colleague do it for them, because it immediately earns the respect of the listening audience." These methods were successfully applied in1999 during a second ENTRY POINT! Internship at IBM's facility in East Fishkill, NY, and his methods continue to serve him well today.
"I benefited greatly from those real-world engineering experiences," Josh said, "particularly in the control, robotics, quality-assurance, and safety fields. It's experience that I'll draw upon time and again in the future."
At NASA, Josh wrote technical documents for NASA's Stennis Office of Safety and Mission Assurance web site, performed graphic logo design, and concurrently participated in diverse assignments such as safety audits and multiple rocket engine tests. At IBM, he worked as a project manager in the design of a robotic device that could be used for repairing laser ablation masks used in the fabrication of semiconductor packaging. It involved, among other things, conceptual design of the robotic tool, as well as designing, prototyping, fabricating, and implementing a micro-controller-based three-axis, six-motor stepper motor controller to operate the robot's stepper motors. Josh's tasks also consisted of business-related tasks such as rapid, cost-effective product procurement and conceptual design of the physical robotic tool. (All this and he still had time to explore New York City and the Hudson valley on the weekends!)
Josh only required one accommodation at NASA and IBM - a private office to minimize distractions that can cause tics and exacerbate the effects of Tourette syndrome. Josh also worked best on a computer with a large, flick-free monitor, with halogen ambient lighting and desk lighting, because he is especially sensitive to screen flicker. After spending his final college semester as an exchange student at the Technion Israel Institute of Technology, Josh returned to the United States. He has since been hired by IBM as an applications engineer with the Applications Specific Integrated Circuits consumer products division in Burlington, VT.
*This 1984 movie described an alleged experiment in which the U.S. Navy applied Einstein's unified field theory in developing a new battlefield technology - "invisibility" - that could make war ships and troops invisible. In 1943, the Navy supposedly dematerialized (translation: made invisible) a destroyer named the USS Eldridge and teleported it from Philadelphia to Norfolk, VA.
Like other people enjoying the career of their dreams, Chris Lamoreaux will never forget the encouragement of supportive parents, motivational teachers, good friends, and so many other individuals who showed him the way. After getting a degree in engineering from Tufts University, Chris landed a job at NASA's Johnson Space Center (JSC) in Houston. He works with a group that is developing X-38, a test program to design the crew return vehicle (CRV), an emergency escape vehicle for the International Space Station.
Chris also remembers the impact that Star Wars had in kindling childhood interest in space, space travel, and aliens. "The interest in my career came when I combined Star Wars with what I learned in school," Chris said. "I loved math and science, and knew I would want a career that would use those. And I wanted to be involved in space technology, so it seemed like the natural course of events. I was a Star Wars kid and dreamed of NASA. I've probably seen the trilogy 10 - 15 times. Actually, Yoda was sort of an inspiration to me. I'm only three feet tall, so it was sort of an inspiration to see a short little character be so powerful, so influential, and not to have any fear."
Chris's short stature is the result of osteogenesis imperfecta, a genetic disorder also called brittle bone disease. It involves bones that fracture easily, sometimes for no apparent cause. Individuals with osteogenesis imperfecta experience many fractures of the arm, leg, and other bones during childhood and have short stature. Chris started using a wheelchair in the 3rd grade and now zips along in a manual chair. It is the fastest way to get around and helps to keep his arms in good shape.
Osteogenesis imperfecta gets progressively better with age, and the risk of fractures diminishes. Chris, for instance, was born with nine bone fractures. Indeed, the obstetrician who delivered Chris predicted that he wouldn't live. Chris sometimes fractured bones by just rolling over. He experienced multiple fractures during childhood, but he rarely missed more than a few days of school. Now he is concerned only with the usual fracture risks, such as bad falls.
Chris grew up in a science and engineering family. Granddad was an engineer who worked on the Apollo project, which sent the first astronauts to the moon. Father was a master's degree-level engineer. Stepdad, an orthopedic surgeon. Mom has a master's degree in English.
How does a kid with brittle bones get through childhood? Very, very carefully - but without forgoing sports and other activities. Chris, for instance, played wheelchair basketball and tennis. One of his role models was Randy Snow, the famous tennis player who uses a wheelchair, whom Chris met at a summer tennis camp in Colorado. Snow was a world-rated tennis star until a spinal injury at age 16. "Randy Snow really inspired me to keep going," Chris said. Interestingly, Snow's World Wide Web page begins with a quotation from Star Wars' Yoda - the master teacher who trained Jedi warriors for 800 years. "Do or do not," Yoda advised. "There is no try." Chris also was in the high school marching band, playing a snare drum that was attached to his wheelchair.
During his junior year in high school, Chris received a Christmas gift from his parents that remains his only major piece of assistive technology, aside from the wheelchair. It is a modified 1995 Ford Winstar minivan. The van has a sliding door and a lift that Chris uses to transfer from his wheelchair to the driver's seat. He drives with hand controls and has a steering wheel that's the dream of everyone who has struggled to maneuver in tight U-turns and parallel parking. This steering wheel turns with a single finger's worth of effort.
...Grow deeper, deeper
Chris excelled in science and math courses throughout the precollege years and took only honors-level courses during high school. Out-of-school and other informal science experiences solidified Chris's interest in engineering.
Chris's middle school and high school had an Odyssey of the Mind team, participating in the national program that encourages outside-the-box thinking and creative solutions to difficult problems. Teams compete in regional, state, national, and international competitions for the best solutions. Chris and his team reached the world finals three times, and twice they finished number three in the world. In 12th grade, the challenge involved developing an assistive device for an individual with disabilities.
They decided to design a mechanical hand. "It was made out of plexiglass, some plastic tubing, a few springs, some cord, rubber thimbles, radio-controlled switches, and sensors - all controlled by a laptop computer which was worn on the person's back. And it worked!"
And there was a summer enrichment program at Macalester College sponsored by the Minnesota Institute for Talented Youth. There, Chris took courses in hyperspace, the theory that dimensions exist that are beyond length, width, height, and time. Many physicists believe that we may live in a 10-D universe.
Pursuing those interests in college was a natural - a fact that Chris said still may not be fully appreciated by parents of students with disabilities and their teachers and counselors. "I don't think they are sufficiently aware that science and engineering can be such an appropriate career for individuals with physical disabilities. I think there still is the stereotype that if you're a person with disabilities, there's something wrong with your head, as well. They need to work on that."
Enter ENTRY POINT!
At Tufts, Chris first lived in an accessible dormitory room and then in an on-campus apartment. He found the Tufts campus accessible, and the Disabled Student Services (DSS) office helpful. From DSS, Chris got a brochure on the ENTRY POINT! program. He applied junior year, and he landed the JSC internship.
ENTRY POINT! lit the rest of the road to Chris's dream career.
"The internship had a profound effect on me," Chris said. "I loved it. I saw that I could really do this kind of work, and that it was really interesting. The internship also made me confident in my abilities. I learned that I don't have to know everything, and that work is a learning experience as well. I definitely would recommend that other students with disabilities try ENTRY POINT! It's a great program and a great way to get your foot - or wheel - in the door."
Chris got his wheel in the door to a permanent NASA job by engineering his own co-op program so he could remain at JSC longer. Tufts had no formal co-op programs, so Chris took a semester of personal leave from school. "I knew if I worked at JSC a little longer, I'd have a better chance of being hired full time," he explained.
And right he was. In September 2000, Chris hit the road for his new life working on the CRV. He drove the adapted van from Minnesota to Houston and moved into a new, nicer apartment, living with his roommate from his co-op days. And on the job, he has already been promoted.
Home | Site Map
Profiles: Assistive Technology | Persistence | Beyond All Expectations | Late Diagnosis | The Golden Door | Informal Science and Popular Culture | The Pinball Effect | Families
Additional Materials: The Roadmaps Game | Afterward | Students' Backgrounds | Assistive Technology | Notes on Disabilities | 1990s Profile of Disabled Disabilities in Higher Education | Acknowledgments | References
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