"Like any other teenager, she loves her family but eagerly awaits full independence."

About: Maria (18)

Age Range: 14 to 21 years

Perspective: Student interview of self-advocate

County: Davidson

Maria wrestles, runs track, swims, cheerleads, and plays “goalball.” In goalball, participating players are blindfolded and no one may speak. Athletes must use their senses of touch and coordination to play effectively. Maria recently turned 18 and is working on getting her driver’s license.  She lives with her mother and stepfather, and she has four siblings. When she’s not on the field, she’s focused on her education. After she graduates, she wants to attend Middle Tennessee State University to pursue a degree in education.  English is one of her favorite school subjects, and she enjoys reading and writing.  She also loves cutting and styling hair in her free time.  This year, she applied her athletic dexterity to hours of treacherous hairstyling for prom.  She loves to paint, too, but her true passion is the rush of the athletic field.

Maria was first diagnosed at age 17.  She always had vision challenges as a child, but the doctors dismissed them as typical.  The main symptoms of the disease did not surface until last year. Her center vision is gradually fading.  “It’s like taking a windshield and breaking it into a million little pieces,” she said.  “As you’re driving, all the little pieces start to fall out.” Maria does not allow Stargardt’s to define her life, and remains optimistic about her future as an independent adult. 

Stargardt’s disease can best be described as a hereditary, autosomal type of juvenile macular degeneration.  In other words, both parents of the affected individual are carriers of the disease, but only the child is affected by it.  90 percent of cases are a result of this, while the other 10 percent receive a dominant gene from one parent rather than one recessive gene from each parent.

Maria’s doctors say her vision has not significantly depleted since her diagnosis.  She is gradually losing the acuity of her center vision, but she has learned to utilize her intact peripheral vision to account for this loss.  She has no problems perceiving her world this way; in fact, she complimented my outfit at the beginning of the interview.  She also stated with confidence that she does not need to wear protective eyewear indoors, a common sight at her school: the Tennessee School for the Blind.

When she was asked about everyday obstacles, she did not speak of anything regarding her vision.  Instead, she spoke about pushing herself in sports and her struggle to maintain good grades. Initially, Maria was upset when the doctors revealed the diagnosis, and she said the week following it was one of the most upsetting times of her life.  However, she quickly realized that she should make the best of her situation.  From that point on, Maria no longer let Stargardt’s disease define or control her life.  “If you have it you should think positively about it like I do,” she said.

Maria would rather focus her attention on finally getting a driver’s license.  She is determined to obtain it so she can learn to drive before she loses her vision later in life.  Maria recently witnessed her younger 16-year-old brother obtain his license. She is determined to get it.

This is Maria’s first year at TSB. She is a senior.  Though she is thankful for the accommodating school, Maria feels as if she stands out at her new school.  She transferred with only one year of high school remaining.

Maria noted that the main difference between public school and the Tennessee School for the Blind is the teaching techniques. Teachers at her new school focus heavily on audio learning.  They also strongly rely on computers to reinforce their lectures.  Computers with text enlargement programs allow for visually impaired students to navigate the Internet more easily.  If students have any trouble reading the computer screen, they can ask for help from a screen reader. At times, Maria is frustrated in her new school. The bulk of her schooling took place in a public inclusive general classroom. She finds herself having to learn new ways of approaching her studies, and she just wants to be sure she stays true to her goal of doing things as independently as possible.

“I’m a determined person, I like to get things done,” she said.  Maria pushes herself toward success.  She is looking forward to supporting herself and living on her own.  After high school, Maria has no doubt that she will attend a four-year college.  She has always wanted to be a teacher, and her disability has not altered any of her dreams about her future.  Like any other teenager, she loves her family but eagerly awaits full independence. 

Updated on Thursday, February 28, 2013