The parents had no roadmaps. They had to draw the maps themselves, build the roads, study the laws, become advocates, fight for the educational rights of their children. The families had to marshal resources in their communities, learn about technology, ration their budgets, drive for miles to clinics, change their jobs, pick up their possessions and move to better school districts. In some families, they left their possessions altogether to move to the United States.
Disability drew some couples closer together and tore others apart. Public opinion and cultural traditions did not always support them. Physicians and teachers did not always listen to them.
They had to carry children to places where there were no ramps, read aloud endlessly to children who could not see, explain to children who could not hear, and be available 24/7 as personal-care attendants.
More than anything, they believed that their offspring would survive, and succeed.
Rahsaan T. Jackson, a wheelchair rider, interned at NASA's Goddard Space Flight Center during the summer of 1997, as a senior electrical engineering student at State University of New York (SUNY) - Stony Brook. Rahsaan was a big hit at Goddard - not only for his intellectual abilities but also for his outstanding personality. "Rahsaan learned the VHDL language in less than two-and-a-half weeks," reported Nicholas Speciale, head of Goddard's Microelectronics Systems Branch. "It takes most engineers a couple of months." He praised Rahsaan's quick progress in grasping the Very High Speed Integrated Circuit Hardware Description Language, as well as the 23-year-old's overall success as a NASA intern. Although an undergraduate, he worked at the graduate level in digital signal processing design. Rahsaan helped design a high-rate multiplier circuit that became part of a receiver that could cut the costs of picking up satellite transmissions by 80%.
At the end of the 10-week internship, when all the Goddard interns made a presentation on their summer research, Rahsaan presented his "Analysis of a High Rate Digital Receiver" and was awarded one of the prizes. Students with disabilities represented only 5% of the intern population. Goddard was anxious to have him back in the summer of 1998. In November 1997, however, Rahsaan became seriously ill with complications from the radiotherapy and chemotherapy that saved his life in childhood. Although he fought bravely for nine months, he died August 15, 1998, at age 24. The following year, NASA - Goddard named an award for Rahsaan, which is presented every summer. SUNY - Stony Brook has established a scholarship for electrical engineering students in his memory. The Rahsaan T. Jackson Scholarship Award for Extraordinary Achievement will be presented to an undergraduate who exemplifies the qualities associated with Rahsaan - scholarship and high academic achievement, integrity, courage, and determination.
Rahsaan made his mark at Stony Brook, earning election into the Golden Key National Honor Society, receiving the Disabled Students Award for Outstanding Achievement, and winning a Northrop - Grumman Minority Engineering Scholarship. Faculty and students alike recalled Rahsaan's energy, gift for computers and computer languages, his enthusiasm for education, and his unwavering desire to help others learn. "Sometimes students inspire teachers," said Prof. David Ferguson (Technology and Society). "Rahsaan was in that category."
During a remembrance and scholarship dedication ceremony, Rahsaan's parents, Richard and Deborah Jackson, recalled how Rahsaan inspired them. "I am very proud of my son," Deborah said. "He had no idea how gifted he was. At first, I thought God sent him to me so I could help him - but Rahsaan helped me." At the conclusion of the ceremony, Rahsaan's parents accepted their son's posthumous degree in electrical engineering. A marble plaque engraved with Rahsaan's picture was placed as a remembrance in the Engineering Lobby.
In his mother's words
Everyone recognized that Rahsaan was an unusually intelligent child. He was advanced for his age, spoke clearly by age two, was very aware of his surroundings, and had this curious inquisitive nature. Even then, I knew he would go to college. It was just understood.
One day, I was bathing Rahsaan and found a lump on his hip. We took him to the doctor, and the biopsy showed that the tumor was a rare form of cancer. Rahsaan had the initial surgery at Jamaica Hospital, close to home, on his second birthday in February 1976. Even then, the cancer had spread, and the doctors thought his prognosis was poor, with probably six months to live. I transferred him from this facility to the Long Island Jewish Medical Center.
The chemotherapy and radiation treatments began in March at the Medical Center. We had to go there every day. A neighbor's daughter took care of our younger son, Ibrahim, who was just a baby then. Ibrahim was born in 1975 and has no disability. He's married, with one child, and works as a senior support analyst for Estée Lauder.
In the hospital, Rahsaan had to spend about 90% of the time in bed, and it was a challenge to keep away the boredom and keep his mind active. We paid $2.50 for the TV in his room every day. He loved educational television programs, especially Sesame Street. His brain was like a sponge.
Rahsaan had two years on chemotherapy. The chemo and radiation gave Rahsaan a new lease on life. But there were side effects that led to his disability. Rahsaan developed paralysis in his legs, lost muscle tissue where the cancer was located. The physical therapists in the hospital were terrific. They fit him with leg braces and got him moving on crutches, so he got around quite well.
Formal schooling started with a program at St. Mary's Hospital for Children. Rahsaan was too advanced for that and was accepted into a higher-level program at Hopetown School in Carmel, NY. It had children with all kinds of physical disabilities, including cerebral palsy. The program was good for Rahsaan from an educational standpoint. It helped us financially because the State of New York paid the tuition. But it meant that Rahsaan would live away from home. I purchased a car and brought him home every weekend. Carmel is upstate in Putnam County, and it was quite a drive - one hour drive each way - especially in those winter snowstorms.
It was impossible to visit during the week because I worked. I have almost always worked, although I did stay home for a couple of years with the children. I grew up in Manhattan and the Bronx, got secretarial skills at Taylor Business Institute, and worked at Chase Manhattan Bank and Marble Collegiate Church. In 1988, I took a new position as a legal secretary in the law firm of Weil, Gotshal & Manges. My current boss's practice includes corporate governance and international clients like the World Bank. I own my house now in Queens. The neighborhood is low- to middle-income, predominately African-American. Rahsaan's dad works at Depository Trust. Richard was active in Rahsaan's life.
Hopetown was a good school. But Rahsaan was too smart and too advanced for the courses they offered. So Rahsaan came back to New York City for 3rd grade. Rahsaan attended Flushing Christian School. The building was not accessible, but he made it up the stairs with his crutches or by lifting up his body with his hands.
He was the only child there with a disability. School was about 20 minutes away, and there were no buses. So I paid for a car every day to drive him. The school was supportive, and he stayed there until the 8th grade.
Out-of-school activities in the community were important, too. I wanted a balance in his life. Rahsaan went to the Sunday enrichment program at the 92nd Street Y. It was interracial, very diverse, and had kids with disabilities. There was bus transportation, too, and the kids went on field trips to the Museum of Natural History, Metropolitan Museum of Art, and other places.
We always had good resources and a strong family support system. My mother-in-law and sister-in-law were very supportive. Everyone loved Rahsaan. He was competitive and creative. I was never in a parent support group. We always adapted.
Rahsaan's dad covered the medical insurance. Medical coverage was more important to us than civil rights. No one in the family worked for civil rights. His dad remarried but paid child support so Rahsaan could have a private education.
Love of science
Rahsaan was always asking, "Why?" He was curious about the world, always trying to understand why things happened and how things worked. He loved science. At age 10 or 12, Rahsaan got a chemistry set. He would mix stuff in wine decanters. Biology was another of his interests. I'd go in his room and marvel at the plants growing there and the animals. He had birds, a snake, gerbils, in addition to the family dog and cat. Rahsaan read a lot, too, both in and out of school. I remember how he loved Electronics magazine. He always would take things apart and put them back together. When he was 16 years old, he paid $90 to get a catalog for an import - export business! He found the ad in the back pages of the magazine. He watched a lot of educational TV, including the Discovery channel.
After 8th grade, he went to Francis Lewis High School, the only one in Queens accessible for students with disabilities. That was his choice. The city provided transportation. When he entered high school, he moved from crutches to a wheelchair.
SUNY - Stony Brook
Rahsaan started college at SUNY - Farmingdale and then transferred to SUNY - Stony Brook and majored in electrical engineering. Everything was accessible at Stony Brook, and he had wonderful mentors. Stony Brook told him about the AAAS ENTRY POINT!/ACCESS program. Then he talked to Laureen Summers at the AAAS. He wanted to do a co-op at NASA or work for IBM in Texas. AAAS negotiated the internship at NASA Goddard, and he started a week later.
The illness had other plans. He went into the hospital at Thanksgiving 1997 and stayed for nine months. Then he was transferred to a nursing home for a short time and later came home where he had a nurse around the clock. The care could not have been better. It was a long way from birth to the university and back to the hospital. Rahsaan's time with us was short, but he touched a lot of lives.
Dress sharper than other people. Work harder. Be more persistent. Show more enthusiasm. Smile more. Be more outgoing. Have a more upbeat personality. Put forth your best effort all the time. Be stubborn when necessary. Have the determination to succeed no matter what. Make the best of an unfortunate situation. No matter what, life goes on.
Lyle and Arlis Kemnitz remember those messages - stated and implied - from the rehabilitation specialists who helped their daughter, Keely, adapt to a new life in a wheelchair after a 1988 spinal cord injury. Keely, then 12 years old, was swimming with family, who took turns walking along a log to dive off the end. She slipped halfway out and instinctively dove to avoid falling. The water was barely three feet deep. The impact partially severed Keely's spinal cord. Keely spent about nine months in hospitals and another three years in therapy.
The advice became an almost unconscious credo as Keely returned to her local school to complete 7th grade and navigated the road that led to a career as a computer software engineer at IBM's Austin Research Laboratory in Texas. "We knew it was good advice," said Lyle. "Keely, for instance, became a much more serious student after the accident. She knew she had to be well prepared for a career, much more well prepared, perhaps, than might otherwise be the case."
As parents, the Kemnitzes found themselves in a very new situation after the accident. They were veteran parents, with Keely the third of five children. However, raising a child with a physical disability was uncharted territory. "We got a good deal of information from the rehabilitation people, especially the staff at the Craig Rehabilitation Hospital in Englewood, CO," said Arlis. "A lot we just learned as we moved ahead."
The closely knit community in Mobridge, a town of about 3,300 in northern South Dakota, provided plenty of support as the Kemnitz family did so. Lyle taught computer and business courses at Mobridge High School, which had about 250 students. Arlis was at home with the five children, two older and two younger than Keely. Lyle and Arlis recall that all of the children seemed to like math and science. An older sister went on to become an X-ray technologist, and an older brother is a landscape designer. The younger children were still in school.
Back to school
When Keely returned to the Mobridge school system from rehabilitation in a wheelchair, the school was not prepared. The two-story building had no elevator. Keely had classes on the second floor. For five years, Lyle and other staff members carried Keely's chair up and down the stairs. Lyle knew Keely's schedule and met her at the change of classes. In addition, the bathrooms had no wheelchair-accessible stalls. Other female students or staff assisted Keely there.
"There were no alternatives for schooling, so far as we were concerned," Lyle said. "A special school would have meant Keely living away from home. We didn't want that." Lyle and Arlis were aware of the requirement for accessible school facilities, but never seriously considered using the legal system to force the changes - a step that can be difficult in a small community. Lyle recalls several meetings with the school board to discuss the accessibility issues, which finally resulted in installation of an elevator for Keely's junior year. Lyle said the elevator continued to be used after Keely's graduation, mainly by students and staff with sports injuries or other temporary mobility problems.
Keely recalled having excellent, supportive teachers in the high school, where she took lots of math courses. One math teacher, Don Paulson, had a special impact in encouraging her interest in math. He made course work interesting and understandable, Keely said.
An accessible campus
Accessibility was an important consideration as thoughts turned to college. Lyle remembers being especially impressed with South Dakota State University in Brookings. It had a good academic reputation and actively recruited Keely.
"The campus was pretty accessible in general," Lyle said. "And they were very willing to work with each individual student with disabilities to make the specifics work out. They moved classes to make it more accessible. We get a lot of snow in South Dakota and that was one of our big worries. South Dakota State promised to get a copy of her class schedule each semester and make sure that the routes to her classes were plowed right away."
Keely started college undecided about a major and then took Lyle's advice and picked a major in computer science at the end of her first year. "I thought it would be a good career for someone who liked math that much, with plenty of jobs available," Lyle said. In Brookings, Keely lived in an accessible apartment and used a motorized chair to navigate the campus. Scholarships paid college costs, and the state hired a personal-care attendant who lived with Keely in an accessible apartment on the South Dakota State campus.
Faith in other people
Lyle and Arlis said their ability to have faith in the basic decency and goodness of other people was a great help as they encouraged Keely to become more independent. The first landmark came in the summer of 1997, when Keely was selected for an ENTRY POINT! internship at the IBM facility in Rochester, MN. "We got in the van, drove 450 miles, almost 10 hours from home, and just left her there for the entire summer," Arlis said. "Another summer, we packed up, and drove all the way to Austin, TX. Said goodbye, and left Keely again to start a career. It takes faith in people, in society - as well as confidence in your own child - to do that."
The IBM internship was a personal confidence builder, as well, according to Keely. "It gave me confidence that I could live far away from home, and a sense of what it was like to work in a real-world environment. I was applying classroom knowledge in practical situations. It made me realize, 'Yes, I can do this work and I really enjoy it.'" After the internship, IBM asked Keely to join the company full time when she got her degree. That was the Mobridge-to-Austin van trip, which brought Keely to her position as an IBM software engineer.
James Sharples spends his days as senior bridge designer in the Chicago office of J. Muller International, whose projects include the 29,040-foot Sunshine Skyway Bridge in Florida and Canada's Confederation Bridge, which spans 8.5 miles between Prince Edward Island and New Brunswick ands ranks as the world's longest bridge over ice-covered waters.
Many an evening finds Jamie dribbling down the court as a member of the Chicago Bulls basketball team, just as he did as the hoop star who helped lead the University of Illinois at Urbana - Champaign to a collegiate basketball championship and national tournament appearance. That's the lesser known but equally competitive Chicago Wheelchair Bulls and the Illini entry in the National Wheelchair Basketball Association.
How does an individual born with a severe physical disability successfully navigate the road from then to now, from there to here?
Diane Reeser, Jamie's mom, recalled the start - the newborn with a spine fractured in three places and a leg broken in four places from osteogenesis inperfecta. Individuals with the condition, also known as brittle bone disease, fracture bones easily until the late teenage years, when the condition stabilizes. They usually mature with short stature.
"The doctors said Jamie probably wouldn't live. If he did survive, he certainly would not be able to live a normal life. They suggested that I consider placing him in an institution. I took him home and tried to raise him like any other child. I never put limitations on him. The only limitations were those he set for himself, and it's pretty obvious that to Jamie, the sky was the limit."
Jamie agreed with his mom on the importance of that approach in his own success and encouraged other parents of children with disabilities to embrace Diane's example.
"Don't place additional limits on a child because you fear the child might fail and feel emotionally hurt," Jamie said. "Don't close any doors or limit options. Give the child the freedom to try, and encourage new experiences as much as possible."
Jamie was born in Camp Hill, PA, a suburb of Harrisburg, a close and caring community of professionals and individuals who work in technology or light manufacturing. Raising a child with osteogenesis imperfecta can be the most nerve-wracking of experiences. Kids are perpetual motion machines, always on the go, falling, bumping into furniture, playing.
For kids with brittle bone disease, those normal bumps and bruises often mean fractures that may immobilize the child for weeks. The natural parental inclination is to try to protect the child, and that may mean limiting activities. Diane, for instance, remembered keeping a notebook in which she recorded the date, time, and circumstances of each fracture. "I was looking for a pattern," she explained. "I was trying to understand the circumstances in which Jamie broke bones so that maybe I could prevent fractures. I counted about 80 by the time he was four years old. There was no pattern, and I stopped. I still have the book."
For Diane, that early childhood period was a special challenge. As a single mom who had attended community college for two years, Diane had to work from shortly after Jamie's birth. That meant job responsibilities added to those of managing Jamie's health and dealing with school officials to ensure that Jamie got the right accommodations.
Bright child, fast learner
Diane said Jamie was an extremely bright child who learned quickly, was very self-motivated, and seemed to set goals and work toward them with steely determination.
"From the time Jamie was very young, I realized his desire to walk. I was always careful to make him understand that it wasn't important to me. He would walk when he walked. Jamie wanted to walk to the corner to his friend's house. He finally made it with crutches and braces when he was about four. That was a milestone."
Jamie attended a special preschool sponsored by the Easter Seals organization and then was mainstreamed in elementary school in the local public school district. At that time, Jamie was the first child with a physical disability to be mainstreamed. In addition, he was an exceptionally intelligent child and as Diane observed, "The school district couldn't just put him in a corner." It took time for teachers and school officials to shift gears and adjust. One episode in kindergarten stood out in memory. Jamie was upset when he got home after school, and mom finally found out why. The school had forgotten to put up the wheelchair ramp over the entrance steps. Jamie was crawling up the steps, while an attendant carried the wheelchair, and other children looked on.
"My biggest fear was that the school would put limitations on him, with teachers deciding what he was able to do. I remember sitting at meetings with school officials and special ed experts. The single mom being told what was best for her child. I didn't put up with it. I wanted Jamie and I to make those decisions. We had to constantly calm their fears concerning his fractures and refocus their efforts toward his education. In fairness, this was a new experience for the schools, and I know they tried to do the best for Jamie."
"My mom struggled to convince people at my school that my limitations were physical, not mental, and that I was actually quite gifted in math and science. She did a wonderful job of it," said Jamie.
Diane wasn't aware of support groups for parents of children with disabilities and did not rely on outside agencies for information. Rather, she did a great deal of reading and research on the topic and often served as de facto health educator, passing photocopied information on to Jamie's teachers.
Problems gradually disappeared as teachers became more familiar with Jamie. Although he was the first student with disabilities in high school, those years went by with barely a hitch, because the teachers were familiar with him. Diane believes that Jamie's bright, outgoing personality ensured his acceptance. "He never had a chip on his shoulders or expressed bitterness about the hand that life had dealt," said Diane, who now is the vice president of an insurance brokerage firm in Harrisburg. "Jamie is fun to be around. He's really my best friend."
Early math aptitude...a soapbox racer
When did Jamie first show an aptitude for science, math, and mechanical things?
It began when he was young, and often immobilized in a full body cast for 6 - 8 weeks at a time while fractures healed. Mom, who loved math herself, started giving Jamie math problems to work out in his head. He solved them with lightning speed and unfailing accuracy. During car trips, Diane would challenge Jamie with problems involving time of arrival at various distances and speeds. "He'd answer, and then beg, 'Give me another, mom.' I couldn't keep up with him." In high school, Jamie excelled at advanced math courses.
Jamie showed an interest in mechanical things in Scouts. His troop had a soapbox derby competition, in which the boys and their dads built makeshift one-person cars that coasted down a hill. "Jamie was the only boy in the troop who was 'not normal' physically," Diane said. "It was really tough because he was the only boy without a dad to be part of all the father - son activities. I became the dad." Diane and Jamie built a racer for the derby competition. She remembers looking at the other entries and realizing that the dads must have done the major share of the work in building rather sophisticated-looking vehicles. Well, as luck would have it, the Jamie - Diane team won. "All those dads were at the finish line with these amazed looks on their faces. It was a real kick, and it gave Jamie a good deal more confidence."
College and career
Everyone always assumed that Jamie would go to college. Diane thinks that Jamie picked the University of Illinois at Champaign - Urbana at age 15, when he attended a summer wheelchair basketball camp there and found the campus very friendly and accepting. In addition to academic scholarships, Jamie won a $5,000-a-year basketball scholarship and became a star on the Illinois team.
Jamie spent a semester in a co-op program with his current company, an experience that solidified his career decision. Jamie also did an ENTRY POINT! internship during the summer of 1997 at NASA's Ames Research Center in California. After getting an undergraduate degree from Illinois, he returned to school for a master's degree at Purdue University.
Alexander Zernovoj, Sr., and Marie Zernovoj, of Redwood City, CA, are parents of Alex Jr., a student at the University of California - Davis who will be graduated in 2002. Alex Jr. is profoundly deaf and interned at IBM San Jose in 1998, 1999, and 2000. Alex Jr. was diagnosed as deaf at 18 months of age, when the family lived in Vallejo, CA. Marie was 19 and Alex Sr. was 23. Alex Jr. was born in San Francisco in 1978. His dad had been working at the Chevron refinery as an engineer - designer in petrochemicals and power. Mom is a registered nurse at California - Pacific Hospital in San Francisco, which was formed in the merger of Children's Hospital and Presbyterian. When Alex was little, she worked two days a week. Dad comes from a Russian family that lived in Yugoslavia after World War II. He was born in Brazil and came to the United States when he was 41/2. His family settled in San Francisco and spoke Russian. Marie is from a Filipino family.
In the following passage, Marie and Alex Zernovoj, Sr., share some of the family experiences as Alex, Jr., transitioned through childhood.
We weren't even setting up goals at that point. There was a Total Communication program for deaf children in the public schools of Vallejo. All the children were learning to sign. Every one said it made the children less frustrated. There were no options in deaf education in Vallejo.
Then we read The Silent Garden*, by Paul Ogden. That made a huge difference. Alex was about three when we finally learned that children who are deaf could talk! When I asked the people in Vallejo about this, they were all going against me. I began to worry that they were doing the wrong thing.
My sister saw a blip on TV about the Peninsula Oral School, where children were learning to talk. It was the Jean Weingarten Peninsula Oral School for the Deaf (JWPOSD). I gave the director, Leah Grammatico, a phone call. I loved her! That was a turning point that made me believe Alex could do anything he wants to do. It was a gift from God.
We developed a strong relationship with Leah. Alex was four years old and as yet had not made any responses. He was way behind in every way. I didn't know what to do. We were all frustrated! But we did not have an answer unless Leah would accept Alex in Peninsula Oral School. The school had very limited space. We tried as hard as we could to get him in!
Alex and I had just bought the house in Vallejo, but we rented it out and moved to an apartment in Redwood City. Leah accepted Alex Jr. on a trial basis. It was wonderful to see. In one year, he made years of progress. He had therapy twice a day. Leah gave so much to Alex. I would tell him to always remember that JWPOSD did so much in making you what you are!
Early science interest
Moving from Vallejo to Redwood City was very difficult. The cost of living on the San Francisco Peninsula is higher. At one point, when Alex was seven and our second son, Andrew, was born, we moved to San Francisco and lived for a year with a relative to save money. Then we commuted every day to the Peninsula. It was a very stressful time. Our parents helped. The school let us pay what we could. California Children's Services paid for Alex's post-auricular hearing aids. Their help is based on income levels. Then Andrew was diagnosed as severe-to-profoundly deaf at age one.
When Alex was young, we got great support from Marie's parents and Alex Sr.'s mom. Alex was starting to show interest in science, an aptitude for mechanical things. Grandpa was amazed at how Alex would take his bicycle apart and then he put it together. Grandpa said, "That child is smart." Family expectations for him were high.
At age seven, Alex went into Jackson Hearing Center, a public school program in Palo Alto, and we bought a condo there. But in 4th or 5th grade, Alex's behavior was really a problem. We got help from counseling. That was another turning point. We learned to focus on what was right and positive. Then he was progressing every year.
One teacher, Sharon Yost, was a very positive influence on Alex. In 6th grade, he was academically average. After 6th grade, he started to excel. In 6th and 7th grade, there was healthy competition among the students who were hearing impaired. They were mainstreamed for part of each day.
At Jane Lathrop Middle School, in the same complex as Jackson Hearing Center, Alex started to become very competitive in sports in the 7th grade. At first, the motivation came mainly from us. Then things started to click, and it came from Alex. From 9th grade on, Alex was mostly mainstreamed at Gunn High School, and did well.
Models for success
We just accepted what the professionals said. Alex was wearing a Maico aid. Leah recommended that he switch to Audiophone. The school really monitored his hearing aids. Daily. There also were back-up aids.
We became good friends with other parents at the Peninsula Oral School. This definitely helped us. We saw role models of older, successful students who were deaf at Stanford, at the school fashion show. This made us feel good. We felt supported: "Your kids can do what they want." Our younger child, Andrew, started JWPOSD at 11/2 years of age, when he was still in diapers.
Eventually, we sold the house in Vallejo and bought a house in Redwood City. Alex got an inter-district transfer from Redwood City to Palo Alto that let him continue all through high school at Gunn High School. Often, you really do have to be the squeaky wheel to get what you want. Redwood City paid Palo Alto and provided transportation on their bus. Alex continued to receive language and speech therapy at JWPOSD. Alex was so motivated to excel at Gunn. It was either football or studies. No partying.
Alex did Little League, Boy Scouts, swimming at the community pool. He tried out for football and was on the team for four years at Gunn. The coaches said that he was the hardest working kid they had seen.
All our parents have died now. Our lives are very busy to accommodate the kids. Now we have more interaction with parents of students with hearing at Gunn.
We chose the option to be oral. We wanted the best. We want our kids to be able to communicate with anybody! We never had to use the disabilities legislation or the legal system to get what our kids needed. We learned from other parents. There were few negative experiences. Some coaches were not so supportive. In Alex's junior year, he got benched on the football team the entire year. In his senior year, the coach finally started him. Alex proved himself. At the end of the year, he won the Coach's Choice Award. He ended up shining at the end.
Alex loved math and science. He had a lot of talent in art and did well in history. He loved to read the sports section of the local newspaper. Gunn gave him real drive to excel academically. We knew he would go to college. We visited the University of California at Berkeley, UCLA, UC Davis, and Cal Poly. Davis offered a lot and seemed a better bet than Berkeley. He wanted engineering. Davis admitted Alex directly into the engineering curriculum. Alex won a bunch of scholarships. Quota International, Jackson Award, Hal Connolly Scholar/Athlete Award, and others. Vocational Rehabilitation of California paid his tuition and books. Supplemental Social Security Income (SSI) paid his dorm and other living expenses. His TDD is paid for by Pacific Bell. Cal Department of Rehabilitation paid for one of his hearing aids. SSI picked up the other one.
There were some problems in the dorm at Davis. There was only one phone line. Alex's roommate got services that did not allow use of a TDD. Dad had to talk to the housing office, and Davis installed another phone line. The university provided Alex with steno-captioning (CART) in his classes, which was a tremendous help! He also had note takers. Disability Support Services was fantastic and arranged everything.
When he began to intern at IBM, we bought him a new "shake-awake." He has his own computer. Since he no longer plays football, maybe someday he will consider an implant.
Peninsula Oral now has an alliance with Redwood City schools. Andrew, our younger son, has been fully mainstreamed in Redwood City since the 2nd grade. Peninsula Oral provides the tutors. We hope that he is just as successful on the road to college and a career.
*Ogden, Paul, Ph.D. and Lipsett, Suzanne. The Silent Garden: Understanding the Hearing Impaired Child. 1982 St. Martin's Press. New York.
Note: Paul Ogden, who holds a doctorate in Education Psychology, and his wife, Anne Keenan Ogden, are members of the AAAS Resource Group of Scientists and Engineers with Disabilities. Both are deaf. Paul is a professor in communication sciences and disorders at Fresno State University and Anne is a registered nurse at San Joaquin Valley Rehab Hospital in Fresno, CA.
1950. Before there was a disability rights movement. Before there was a law that said all children with disabilities had a right to go to school with other kids on the block. Before parents could seek legal redress if they believed their school district was not offering a real education to their child with a disability.
In 1950, there were no screen readers and no refreshable braille displays. There were no TDDs in homes or airports, no closed-captioning on television. Few campus buildings had ramps or elevators. We did not have e-mail or the World Wide Web. No touch-tone phones. Among families, long-distance phone calls were mostly reserved for emergencies.
There was a sense of community, and neighbors shared information and loaned magazine articles over the back fence. People mailed letters to their far-away families; when they had troubles, they sought support and advice. Public and school libraries were an important source of information. And there were families who rejected the negative stereotypes and low expectations given to them by physicians and educators.
Wanda and George Cullers became parents in that era. When they learned that Kent, their first-born child, was blind, they were determined that nothing would prevent him from reaching his full potential. The physician said, "That poor blind baby, he should have died." The Cullers, however, had a different vision. Thus Kent, who grew up to be a physicist, became one of the role models for the generation that was to follow, living proof that a person with a disability could achieve national and international renown as a scientist.
Kent Cullers is the real-life Kent Clark, the blind researcher in Warner Bros.' 1997 science fiction thriller, Contact. The movie was based on Carl Sagan's novel about humanity's first contact with extraterrestrials. Sagan did his homework in researching the book and modeled Kent Clark after Kent Cullers. Cullers works at the Search for Extraterrestrial Intelligence Institute (SETI) in Mountain View, CA. Cullers is the manager of Project Phoenix, the world's most sensitive search for extraterrestrial intelligence, and is the leader of its signal detection team. Cullers, who is blind, actually auditioned for the movie role. But on the sound stage, that Ph.D. in physics from the University of California at Berkeley didn't pull much weight. Kent Cullers lost the Kent Clark role to professional actor William Fichtner.
In the following narrative, Wanda Cullers shares thoughts about the combination of intellect, perseverance, and family that helped Kent along the path to his career in the pre-ADA era before legislation leveled the playing field for individuals with disabilities.
In his mother's words
We realized Kent was a genius before he was a year old. Keep in mind that I'm the mom, and may not be the most impartial source. But he was an extraordinarily gifted child. He learned to talk early on, and was unusually aware and interested in everything. Kent would notice the difference in the shape of doorknobs, and wonder why. By age one, he could tell the difference between all the fruits and vegetables in the produce market. We had a pegboard, and Kent learned the alphabet from that by age four. He could tell time at age three. My husband, George, and I would read him those Golden Books, the children's books. Kent would memorize and recite the whole text when he was two. Kent's father passed away a few years ago. It was a real partnership in raising Kent and his younger sister.
Kent was born premature while my husband and I were students at the University of Oklahoma. Premature babies often have immature lungs, and the baby can't breathe normally. In the 1940s and 50s, they treated preemies with 100% oxygen. Later, doctors realized that it could cause a condition, retrolental fibrophasia, which scars the retina and damages vision. Kent was four months old when we found out he was totally blind.
We treated him like any other child. We knew Kent would be living in a sighted world, and we wanted him to function in that world like everyone else. No one lowered expectations. We also had an extended family that was very strong. At that time, we lived in Oklahoma, and Kent went to a private kindergarten. I had to convince them to accept him, but they did. It was good, because we had friends whose children went to that kindergarten, and Kent stayed with his friends.
A family move for mainstreaming
After kindergarten, we moved to Temple City, CA, so Kent would not have to go to the School for the Blind in Oklahoma. I had read about Temple City in an article in The Ladies Home Journal and the services they offered to mainstreamed students who are blind. They didn't use that term, "mainstreamed," in 1955. "Integrated" was the word then. The idea of including students who were disabled as a part of the general school population was brand new. About 1% of the school population in Temple City was blind.
Dad was an engineer with the Halliburton Oil Well Co. in Oklahoma. He had corporate support, and we moved to California in 1995. Later, George worked in the space program for North American Aviation, which became Rockwell International, which became Boeing.
Everyone in Temple City was terrific - the school, the principal, the staff. The California neighborhood was good. Kent was expected to do everything that other kids did. He had such determination and persistence. He learned to ride a bike and use roller skates, and then went up and down, up and down, up and down the sidewalk until he was perfect. We returned to our extended family for vacations.
A determined mom
I wanted to avoid having Kent think that he would get a free ride because he was blind. Oh, I was hard on him sometimes. I remember one time in 1st grade when all the neighborhood kids were playing with toys in our yard. It got dark. They went home and Kent came inside. "Where are all your toys," I asked. "Outside in the yard," he answered. "Well, I said, don't you think you should bring everything in?" He came back in with his little arms just loaded with trucks and things. That was the last time he let those kids go home without picking up the toys.
One day Kent came home and announced that when he was 16 years old, the state would give him $80 a month. "Oh," I said. "What for?" "Because I'm blind," he said. I told him that he shouldn't expect to get anything just because he couldn't see. If he wanted money, he would work for it. He kind of shook his head side to side and said, "Oooookay, mom. Let's drop the whole thing. I'll work." He did, too. One of George's colleagues had a small business, and Kent put together spring-loaded holders for electronic components - so many for one cent each. In high school, he tutored other kids for $3 an hour.
Kent's teachers had the same attitude, and it was really very positive and caring - although it may seem hard now. They never treated him like he was blind. He was treated like any other kid. One time in 2nd grade, another boy was bullying Kent in the schoolyard. It went on for a while, and then one day Kent got his hands on the bully. There was a fight, and the teachers were there watching, and they let it go on for a while. That boy never picked on Kent again.
In elementary and high school, I always made a point of getting to know the teachers and principal, and I was active in the PTA and other school programs. It really helps if the teachers know you, and know that you're there supporting your child.
Sister Mary Mark from Immaculate Heart College gave him piano lessons. They knew braille music. Kent learned music theory and played for his own enjoyment.
Our daughter, Susan, was eight years younger. There was no jealousy. No sibling problem. When Kent came home from school, he would give Susan her bottle and play with her. They were really close. From about 12 on, Kent was an amateur ham radio operator. He had all kinds of equipment, and kids from around the neighborhood would come in and be amazed at how they could talk to people thousands of miles away. Susan would be there, too, in that "inner sanctum" with the older kids.
Kent had devoted teachers. For example, when he was in 12th grade, his calculus teacher at Pasadena City College sought out computers so Kent could be a programmer. Kent listened to early morning TV. UCLA had a program at 6:30 in the morning. He read voraciously - anything that the Braille Institute had. I remember Gone with the Wind - volume after volume after volume in braille. He loved mysteries and science fiction. Later, he graduated with honors from Pomona College in Claremont, CA. All his math books had to be brailled. It was a big frustration to discover that many texts, especially the math texts, were unavailable in braille.
I wrote letters all over the United States to find braillists with whom we would connect as the transcriber. There were not that many braille transcribers who could transcribe higher level math, so we did a national search. We, the family, paid out-of-pocket for those services. But Kent was charming! He always thanked the braillists. The family found out about assistive technology. And the family paid for it. The schools knew about everything up through medium tech. At that time, there was no Optacon, no Versabraille. That changed about 1971.*
When Kent went to Pomona College, dad made maps of the campus with toothpicks and glue. This is medium tech. Our goal was to make him independent. We bought his electric typewriters when he went to Pomona. He started early on in independence - went alone for haircuts, etc. Once someone saw him walking alone and said, "Sir, you are in the street!" Kent replied, "Madam, so are you!" The "travel training instructor" taught him to walk alone to school.
The state paid his expenses at Pomona College. At age 16, he became a client of the Vocational Rehabilitation Department of California. He had a good counselor who accepted the fact that Kent wanted a private college, and they paid for it. They also paid something for graduate school at UC - Berkeley. Kent received several scholarships and was a National Merit Scholar.
At Pomona, he knew he would get an advanced degree in the sciences. Both parents went to college, and we assumed that the kids would go to college. There was no question about that. I wanted him to go to grad school at Stanford, but he chose Berkeley. He was a research assistant in the physics department at UC - Berkeley while he was getting his Ph.D.
Life has not been easy for him, by any means. Kent's first wife, Carol Powers, died very suddenly when their two children were preschool age. During the year that Kent was widowed, Susan, George, and I helped with the children. In a year, Kent married Lisa, a filmmaker and artist, who was making a film about him. But his outlook always has been so bright and positive. I asked him a few years ago if he ever felt bad because he was not like other kids. He laughed and said he sometimes felt bad because other kids were not like him.
There's never been a day I wasn't proud of him - not because of his accomplishments, but because he's such a nice person. Kent always had a pleasing personality, and I think that was important in his being accepted and successful.
*In the early 1970s, Dr. John Linvill, professor of electrical engineering at Stanford University, developed the Optacon, originally for his daughter, Candy, who is blind. The user could scan a page of print with an electronic wand, line by line, and feel the shape of the letters by touching an electronic device in the other hand. The Versabraille was a further refinement, which allowed the user to make notes and go back to retrieve written materials. In the 1980s, screen readers attached to computers began to give persons who are blind a choice of voice or braille output; however, there are still limitations regarding graphical - user interface. As the Internet and CD ROMs were increasingly used as learning tools in addition to science and math textbooks during the 1990s, new opportunities and new barriers were presented to users who are blind. Currently, the National Science Foundation is funding dissemination of guidelines to make web pages accessible. Recording for the Blind and Dyslexic is producing electronic books in digital form that give readers navigational options not available in traditional cassette recordings.
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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 Students with Students in Higher Education | Acknowledgments | References
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