Bismarck High School seniors Amber Kraft and Cole Roberts are just like any other teenagers going off on their own, but with a characteristic they have proven does not define them — they are blind.
Roberts was born with a very rare genetic disorder called WAGR syndrome. The letters of WAGR stand for the physical effects of the disease. The symptoms include Wilm’s tumor, which is the most common form of kidney cancer in children; aniridia, where some or complete loss of the irises occurs; genitourinary problems and mental retardation. People with WAGR syndrome usually have two or more of the symptoms.
“No one in my family has WAGR, but I am now a carrier and have a 50 percent chance of passing it on to my children,” Roberts said. “I have every symptom of WAGR except R. I had glaucoma (a condition of increased pressure within the eyeball which gradually causes sight loss). My family and I knew I was going to lose my sight from very early in my life. They started teaching me colors, tactiles, shapes, etc., in preschool. I totally lost my sight in first grade. In the same year I lost my sight, I also lost my right kidney to Wilm’s tumor. I cannot see at all, but if you say that is a red car I can picture it in my mind.”
Kraft was born with familial exudative vitreoretinopathy or FEVR disease.
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“A lot of people have it, but they just don’t have the symptoms that I did,” Kraft said. “I lost all of my vision in my right eye when I was 4 years old, and then I had some vision in my left eye until I was 14. What happens is the vessels in your eyes break open and they start to leak and contaminate the fluid that is in your eyes and it detaches your retina. Then you lose your sight and they try to do surgery to fix it, but it doesn’t always work. I had a lot of surgeries when I was younger, and I don’t really remember them. Then when I started to lose my sight again when I was 14, I had six surgeries within a year. I go to Detroit to see the eye doctor, and I was flying back and forth every two weeks. I feel like I missed most of my eighth-grade year.”
Bismarck Public Schools teacher of the blind and visually impaired Brandi Trom-Anderson has helped teach Roberts and Kraft the skills they need inside and outside of the classroom since they were in preschool.
“Most of my students are scheduled in my room for one class period,” Anderson said. “During this time, I might preteach a tactile drawing they need for class; students may be introduced to a new Braille symbol for math; they may learn how to navigate a website using a screen reader called JAWS or we may even go to the kitchen and prepare a snack or meal. Students also practice independent mobility skills. One to two times a week they meet with the orientation and mobility specialist to learn how to be independent travelers whether they use their cane or the city bus. They learn to listen to traffic and safely cross streets.”
Roberts and Kraft can participate in class by using a BrailleNote that is like a computer with just a keyboard, and a laptop with a screen reader on it called JAWS. Teachers email or use Dropbox to send assignments or PowerPoints of the learning material.
“My technology is like a sighted person’s paper, writing tool, calculator, planner, books, etc.,” Roberts said. “I use a BrailleNote that is around $7,000. The better the BrailleNote, the more money it is just like a car or a computer. I am good on the laptop, but I am much better at the BrailleNote. On the braillenote I can type 50 words per minute.”
Roberts said that he does all of his school work on his BrailleNote.
“My BrailleNote can talk to me,” Roberts said. “A lot of the time I will just listen to the BrailleNote, but if I am in public, like school, I will read the braille or put headphones in. Most of the time in school I will have one headphone in and one ear open so I can follow along as the teacher is presenting notes.”
In addition to school, both Roberts and Kraft have had jobs. Currently, Roberts has a volunteer job at the nursing home called Touchmark, where he goes twice a month to read current events from the newspaper to the residents. Recently Roberts was hired by the Bismarck Tribune in the sports department.
“Businesses will email me upcoming events, and I will pick out the important information and send it to the paper,” Roberts said.
Kraft has had two jobs and is applying for another in the Call Center.
“My first job I worked at Sykes, and I think it was easier because there were two other blind people who worked there,” Kraft said. “So they were already prepared and knew how to help me and everything. For my second job, I worked at the Search Company of North Dakota, and they weren’t so sure about how to make accommodations, but we worked together to figure it out.”
This past summer, Roberts applied for a volunteer job at a local business.
“I am not going to judge or snitch on anyone, but when I called there they seemed like they were very happy and excited that I wanted to volunteer,” Roberts said. “As soon as I told them I was blind, they totally changed their tune. I felt like they were coming up with every reason under the sun why they did not want me to volunteer there. They told me I could not do it without someone constantly with me. I felt like they were indirectly calling me a liability, and not able to do the work independently.”
Anderson said it is difficult for a person with disabilities to find a job. She said it is more “the fear of the unknown. The employers don’t know how to act and do not know what they (people with disabilities) are capable of doing. The employer fears that the job would be a ‘hazard’ for someone who is blind.”
This school year, both Roberts and Kraft wrote their senior papers on the topic of the difficulty of finding a job that people with disabilities face.
“I think the most difficult thing is trying to prove to the employer that you are capable of doing things,” Kraft said. “I think a lot of people think that because I’m blind I can’t really do things, but obviously I can, and I just have to prove that to them. And I think now that I have some experience, employers can see that I am capable of doing things.”
Also, Anderson feels that having the ability to read Braille largely affects a visually impaired person’s job opportunities.
“All the technology in the world will never take away the importance of being able to read Braille,” Anderson said. “Braille is literacy and the employment rate for someone who is literate in braille is higher.”
When Roberts and Kraft were in preschool, Anderson taught them to read Braille in a fun way much like a child with sight.
“Usually it starts with tactile discrimination,” Anderson said. “We have to train their fingers to be able to tell the difference if one little dot is different. Like all children they loved to ‘look’ at pictures. We have a library of tactile books in our program.”
Kraft said that being able to read braille allows a person who is visually impaired to be more independent.
“Walking through a building trying to find a room, if you’re blind and you can’t read Braille, and you’ve never seen print before, you’re not going to be able to find that room by yourself,” Kraft said. “You will have to ask for help. So if you can read Braille it’s just going to make you more successful because you’re not going to always have to be reliant on other people all the time.”
After graduation, Kraft wants to go to Bismarck State College for a couple of years and then to the University of North Dakota to be a computer programmer.
This summer, Roberts is planning on going to Sioux Falls, S.D., for 10 weeks. There he will take part in a rehabilitation program for people who are visually impaired. The center offers many classes, including technology, career seeking and training, daily living skills, mobility training or cane work in the community, etc. Roberts wants to have a career in customer service, phone operations such as the switch boards or a dispatcher.
“The rehabilitation center will help people like me transition from high school and living at home to being independent,” Roberts said. “In April, my family and I are going to tour the school just like any other senior in high school goes to tour their college. After the 10 weeks, I am not sure if I will need more training or if I will be able to complete the program. I am keeping an open mind, and I am not sure if I am going to college after the program or if I will just start in my career.”
Anderson said colleges have someone who is available to support students with disabilities, and that Roberts and Kraft will have the real college experience.
“They (Roberts and Kraft) will have many of the same experiences as their peers along with added challenges,” Anderson said. “Challenges might include navigating campus, meeting people, and probably the biggest obstacle is getting materials in an accessible format.”
Roberts said that he “is just a typical senior” who lives every day by his motto, “Walk by faith, not by sight.”
“I was scared to come to BHS at first,” Roberts said. “BHS is a large school. I think just starting high school or going to a new school in general, including college, is a scary thought for everyone, sight or no sight. From Day One, all of you have been supportive and very welcoming. I thank you.”