Ashley's Story: Living Life to the Fullest with Spina Bifida

According to the National Center For Education Statistics, in 1999 an estimated 428,280 students with disabilities were enrolled at two and four-year educational institutions. For many it can be a challenging experience, not just with the work load or finding time for a social life, but with the fallacies attached to having a disability.

For 25-year-old Ashley Johnson, a Graduate student majoring in Substance Abuse Counseling at Clarion University, having Spina Bifida has been a lifelong lesson in learning to accept yourself and having the determination to follow your dreams.

Wearing her favorite Broadway shirt, the former theater major turned mortician assistant sat down with me to discuss her disability and how she's learned to leap over every obstacle that comes her way.

Johnson's disability is only one facet of her life, but whether she's using her wheelchair or crutches, it's the first thing people see and while some would falter at being on the receiving end of a pointed finger or glaring eyes, Johnson takes it all in stride, realizing that what doesn't break you, makes you stronger.

"I know I have to try harder and work for things more so that others won't judge me based on my disability," she says. "I refuse to be any less than the next person in anything I do."

However, Johnson realizes that there are limitations to what she can or cannot do, but they won't stand in her way.

"I have to consider the physical aspects of everything I do," she says. "Can I restrain a juvenile in a counseling center? Probably not. Does that mean I can't be a counselor in a juvenile center? No. Perhaps I'd have to under-go special training to protect myself and the safety of others, but it doesn't mean I can't do the job."

It's that strong-willed determination that gives her strength to experience things that some would consider impossible or unusual for a disabled person, including performing in the theater, obtaining her driver's license and getting her first car.

"I think some people probably think I can't do as much as I can," she says. "I think it may surprise others at what I strive to be good at and what I work towards. I'm a strong-willed person, partially because of my disability."

Wearing a cross around her neck, it's no secret that faith has always been an integral part of Johnson's life. While others may get angry at God when forced to deal with obstacles they never asked for, Johnson believes that everything happens for a reason.

"I have always felt as though I was born with Spina Bifida for a reason. I was created to help other people, to enjoy life and to go against the so called norms of people with disabilities," she says.

She has her moments of questioning God, but also realizes that nobody is ever born the exact way they want to be.

"I have certainly questioned why I was born with Spina Bifida. But I have also questioned why I'm not blessed with a thinner body, why I have never been good in math and why I get anxious over stupid things," she says. "Having Spina Bifida does define who I am in a way, but I think I see it more as another aspect of me and not a complete defining aspect."

The biggest challenge in her life has been learning to be comfortable with who she is. While most high school students were worrying about the prom or the latest fashion statement or whether Brandon was going to get back together with Kelly on Beverly Hills 90210, Johnson was worrying about not fitting in.

"When it got down to it, I didn't like being different. I didn't like people who made fun of me, I didn't like spending countless summers and school days in the hospital and I didn't want to be defined as 'the girl in the wheelchair.'"

But things have changed drastically in the few short years since high school.

"I have more confidence now in who I am and what I am capable of," she says with maturity far beyond her years. "Experience, time and wisdom have helped me get to where I am today."