Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Alex (18), Blind, Fayette County


"I look at my disability and still consider myself lucky. I could have had so many other problems, and I just thank God every day."

  • A Student interview of self-advocate's Perspective
  • Posted on 3/04/2013

 

Alex was diagnosed with brain cancer when he was nine-years-old.  He has had two surgeries, one at the age of nine and the other around the age of thirteen.  He was born with 20/10 vision, but was starting to lose his sight from the pressure of the tumor behind his eyes.  Alex had a type of cancer called Juvenile Pilocytic Astrocytoma (JPA). 

JPA most often occurs before the age of twenty. The exact cause of JPA has yet to be determined.  The symptoms often seen in JPA are different depending on the size and location of the tumor.  JPA of the optic nerve can cause loss of vision and atrophy, or a decrease in the mass, of the optic nerve. 

Alex no longer has to go through radiation treatments but returns for tests every once and a while to be sure that the cancer has not returned.  In regards to these doctor’s appointments, he states “It has been difficult because I have to skip school so often for doctor’s appointments.  I try to schedule them in times so it won’t affect my school or education, but when I get low on my medications, I have to miss school to go, and my mom just drives me back to school after the weekend.”

At one point in the interview, Alex stood up to demonstrate that he is double jointed in his knees.  He explained that he used to have to wear leg braces, and this is why he is still doing physical therapy.  His house has an exercise area that helps him do exercises for his legs.  He does not have trouble walking, but sometimes if he stands still for too long, his legs will bother him.

With talk of home, Alex mentions that he attends a church where he is from.  We asked Alex if his spirituality or faith play a role in how he deals with his visual impairment. His answer was, “Spirituality and faith don’t really play a part; I look at my disability and still consider myself lucky.  I could have had so many other problems, and I just thank God every day.”

Alex is a junior and has attended the Tennessee School for the Blind for eight years. He has many ideas about what he wants to do after graduation, including attending the University of Memphis.  He is curious about what sort of accommodations colleges and universities can offer those who have a visual impairments.  He discussed many computer programs that he might be able to use in college. These include JAWS, which is a speech reader program that reads the text off the computer screen.  Another program Alex has used is called Zoom Text, which is an internal magnifier in the computer.  It will make the text bigger and easier to read. 

Alex loves books. He can read Braille, but it would take him so long to read a chapter book in Braille, that he prefers to listen to books on tape.  “I would only finish a chapter a month if I were to read in Braille, and I would have to go back and reread a lot of things to understand them. It is much easier to listen on tape so that I can read a lot faster.” Listening to books on tape is one way that he passes the time on the bus home each weekend (7 hours). 

 

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