By Emily Kolars
She was just putting on eyeliner. A simple task. Close one eye, run the pencil across the lid. But Gretchen Maune noticed something was wrong.
She saw only a mass of blurry gray objects out of her left eye. A couple weeks later, she began losing vision in her right eye. Within a month and a half, she was legally blind.
Two days before her 24th birthday in 2006, Maune was diagnosed with Leber’s Hereditary Optic Neuropathy, a rare genetic disease that affects approximately 4,000 people in America. Usually striking in the victim’s early 20s, the disease programs the optic nerves to start dying.
“It was devastating,” Maune says slowly. “I thought my life was over.”
At 30, her world is now blurs of gray with bits of vivid blue and purple, the only two colors she can still see. It’s as though she is looking through a coffee filter with only a small amount of peripheral vision.
Maune had to relearn how to do everyday tasks such as brushing her teeth, putting on makeup and using a computer. She learned how to read and write in new ways and to walk with a cane.
With the help of Rehab Services for the Blind and her guide dog, Keeper, Maune slowly began to lead a normal life again. She got an apartment near the MU campus and can tell you exactly the location of everything in her apartment. The square directly across from the couch on the right side of her bedroom is the TV. The large rectangle with small blobs is the bookshelf.
But recognizing objects around her gets trickier when she is in unfamiliar territory. She’s an avid coffee drinker and ends up with a lot of empty cups to throw away. Maune usually doesn’t have trouble spotting trash cans based on their size and general location. However, one day at the Trulaske School of Business, she leaned over to her friend Kyle and asked if the object in the corner was a trash can. “No, that’s a person,” Kyle said, laughing. Maune spun in the other direction and walked away. Luckily, the person had a good sense of humor.
In 2008, Maune made herself go to a Lutheran support group called Circle of Friends. The people she met helped her understand that her condition didn’t define her. “I didn’t know you could be visually impaired and be really OK and still do stuff,” she says.
One of the members, Deanna Noriega, sparked Maune’s interest in public policy. Maune had the opportunity to shadow Deanna in Jefferson City. At the time, Deanna was a legislative liaison for Services for Independent Living. Maune calls her a “good kind of lobbyist.”
In August 2008, Maune returned to classes. She completed her English degree in 2010. The following fall she decided to attend the MU Harry S. Truman School of Public Affairs. She is currently in her second year of the public policy program. One of 25 blind students at MU this year, Maune is the only one in her MPA program.
Learning how to be a student again took time. Reading Braille is time-consuming, so she has her computer read to her through a program called Job Access With Speech. This semester, Casey Parnell and Jennifer Plemons, who are in the same MPA program as Maune, help read class material to her.
“We talk about a lot of other things other than the work,” Plemons says. “We became friends really fast.” Parnell and Plemons read printed pages out loud so Maune understands the material better and completes homework more quickly. They help create pictures for her. In Maune’s case, this involves a lot of descriptions of graphs in her public policy classes.
Despite the help, Maune says being a blind student is an uphill battle at times. She’s found that much of campus isn’t readily accessible to her. Most professors use PowerPoint presentations that she can’t see. Ellis Library doesn’t have Braille books, and the Rec Center doesn’t have any equipment with Braille, either.
But even with these hardships, Maune wants to help people understand that having a disability doesn’t mean their lives stop. That is one of the main reasons she wants to become one of the “good” lobbyists. As she puts it, we all have disabilities; some are just more visible than others.