A double major in political science and philosophy with a minor in religious studies, Cal State Fullerton student Jestin Samson, 23, is not your typical student. Not only does he possess the ability to excel in three different areas of study, but he is also one of 60,000 people affected by the genetic condition aniridia.
The term “aniridia” translates to “without iris”—this means that a person born with aniridia is born without a fully developed iris (the colored part of the eye).
Aniridia is a panocular condition, meaning it can also affect the cornea, retina and lens of the eye. Glaucoma, foveal hypoplasia, nystagmus, strabismus, dry eye, corneal degeneration and cataracts are all conditions that can develop as a result of aniridia, according to VisionForTomorrow.org.
“I guess the way to describe this is if you walk into a movie theater your pupil acts as a camera lens,” said Samson. “Since I have no pupil and it’s always dilated, when I go in (somewhere) from dark to light and vice versa a whole host of light comes into my eye. I hate glare.”
Samson also has glaucoma, which he describes as pressure in the eye.
“To be fair I’ve had better vision earlier in life,” Samson said, “but it’s kind of deteriorated over time. The best way to describe what I see now is about—I’ve been told by individuals—my vision is between 5-15 percent.”
Samson has never let his vision hinder his social skills or affect how he interacts with others.
“I’m very blessed to have people who understood me and people who tried to understand me. People who actually make the effort to try to talk to me,” Samson said.
As a public speaker for the Disability Awareness Foundation, Samson is able to go to schools and talk to children about disabilities.
“(We help others) to see that even though people look different or do things different they are still able to do the same tasks (as people without disabilities),” Samson said.
“So I kind of tell the students, for example, how do you get from point A to point B? You drive a car. What if I said I take the bus? Is that any different? I still get from point A to point B. Same thing with writing, I use braille. I’m still doing the work it’s just done differently,” Samson said.
Samson first learned how to read braille when he was in fifth grade.
It took him about one year to learn basic braille and about two years to catch up to standard grade level.
At CSUF, Disabled Student Services is a free service program available to all qualified students with disabilities that affect the educational process.
The program provides registration assistance, a computer lab, disability management advising, counseling, research assistance, support groups and advocacy workshops, to name a few.
Rosalind Blackstar, office manager of Disabled Student Services, estimates more than 800 students are affiliated with the program.
Overall, Samson described his six years at CSUF as a good experience with many understanding professors.
Samson said his Introduction to Christianity class with Paul Levesque, Ph.D., in fall 2009 was one of his favorite classes.
Levesque, a comparative religions professor at CSUF, said he remembers Samson as a fine student who was always eager to participate in class.
“I do show a number of videos (in my classes) and I often say (to students) tell me something you saw or heard (in the video). I stressed asking the question, ‘What did you see?’ With other students answering that question, that gave the information to Jestin,” said Levesque.
Levesque, who has had multiple students from the program in other classes, said he believes that students without disabilities can also benefit from tailoring classes to better fit those with disabilities.
“There have been some professors I’ve had in the past that really just didn’t know how to deal with students with disabilities and maybe some people around campus too,” Samson said. “If there’s one thing I’d advise, I guess, it’s just better disability awareness.”
In addition to taking four classes this semester, Samson is also working on an independent study with an associate, Mark Redhead, which he describes as “independent research.”
“My particular topic is on democratic theory and inverted totalitarianism, so basically (I research) issues on power, democracy and corporate capitalism,” Samson said.
At the end of his research, Samson will have to write a paper, which he hopes he will present at the Western Political Science Association, a large academic conference.
Samson does most of his research on the weekends, which involves listening to audiobooks or surfing the Internet by using a screen reading software called Jaws, which reads the Windows environment, Samson said.
He also uses a Braillenote M-power, made by Humanware, which has an interchangeable display menu, speaking capability, and refreshable braille.
Samson is able to do all papers, homework assignments and exams using his Braillenote M-power.
“I’m very flexible when it comes to that stuff (using different types of technology),” Samson said.
Samson also has his phone speak to him by reading text messages, missed calls, and other notifications out loud at a faster-than-usual speed.
“I think what makes Jestin such a successful student here (at CSUF) is his unique skill set,” said Aliah Mestrovich Seay, coordinator of support services and student services professional at Disabled Student Services. “He is someone who really knows how to use a lot of different types of assistive technology.”
Seay also describes Samson as an active participant in the program, whom she regularly sees.
“It’s more of a collaboration than me going in and prescribing accommodations. That’s the way it should be, because he’s the expert in his disability, I’m not,“ Seay said.
Seay, who has over 300 students on her caseload, describes working with Jestin as a special experience.
“I know him. He’s made a point in making that communication even more possible,” Seay said. “I can’t say enough positive things about Jestin.”
Samson would like to get a Ph.D. in political science with a speciality in political philosophy and an emphasis in democratic and critical theory.
In addition, he would also like to get a juris doctorate and become a civil attorney specializing in constitutional law or be an instructor at an institution of higher learning.
“If politics is my calling, I’d like to run for public office,” Samson said. “I would like to do everything as humanly possible.”
A man with many goals and a bright future ahead, Jestin Samson’s disability does not define him—he defines his disability.