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Equal access, equal rights

  • "If there is going to be change, then the change has to start with me."
    "If there is going to be change, then the change has to start with me."
Published December 18. 2009 05:00PM

The Hunter Street hill is steep. The sidewalk is broken, the cement slabs have lifted. It's impossible to navigate the walkway in a wheelchair.

Jamie Folweiler has no choice but to go out into the street. He rolls his chair down the long, sharp incline and safely makes his way to the bottom. There, he pushes himself back onto the pavement. Then he notices a police car behind him.

Instead of offering support or assistance, the officer utters a cruel, uncaring remark.

"You shouldn't be out on the street. That's why we have sidewalks."

The hurtful episode happened many years ago when Jamie was younger. But he remembers it well. At 36, he remembers all of the challenges he's encountered in dealing with the effects of spina bifida, a birth defect that sentenced him to life in a wheelchair.

But Jamie doesn't dwell on the negative. Instead, he uses it as a springboard to action. He fights for access, speaking out on behalf of many who can't, and collecting victories wherever he can.

"I want to change the public's attitude about people with disabilities," says the Tamaqua native.

Jamie was born in 1973, the son of Ed and Donna Hill Folweiler.

He faced physical challenges from the start.

"Spina bifida means the spine isn't developed. In my case, the spine was open, actually exposed in the lumbar section."

The condition is found with three different levels of severity. At its most severe, it can be fatal. For Jamie, it meant a constant fight for mobility even in the early days when he tried to walk. For a time, he did walk. But the odds weren't in his favor. Spina bifida takes a toll.

"I walked with crutches and braces up until age 15 or 16. The lower extremities don't develop as they should. I feel nothing below the knees."

When he tried to walk, Jamie was prone to snapping bones in his legs. In grade school, he broke a femur simply by walking down the hallway.

Still, determined Jamie has never let the condition compromise his active lifestyle. As a child, he spent many hours fishing at Kellner's Dam, near his Brown Street home. He graduated from Tamaqua Area High School in 1992 and earned a degree in business administration at Schuylkill Business Institute.

He learned to drive a specially-adapted Chrysler Sebring convertible. Amazingly, he taught himself how to get in and out of the vehicle by hoisting the wheelchair over his head and into the back seat.

If there is a way to do it, Jamie will figure it out. His life is perhaps best described in terms of ability, not disability....something he readily acknowledges.

"I honestly feel this world has a bigger problem with my disability than I do."

For a time he worked in advocacy for the Anthracite Region Center for Independent Living. The job was a natural fit and Jamie threw himself into the work.

"I enjoyed peer mentoring, advocacy and working with the disabled," he says.

Unfortunately, the duties were dissolved due to downsizing. But Jamie hasn't missed a beat in his mission to secure rights for the challenged.

A few years ago, he helped to organize protests at a local post office, a ten-year battle to secure access for those unable to climb the steps into the 90-year-old building. The postal service eventually made concessions by designating an accessible rear door for use by the physically challenged.

Then Jamie generated accessibility awareness throughout the town during a streetscape construction project. He wanted to make sure that consideration would be given to the plight of the disabled.

He helped to orchestrate a business accessibility survey using guidelines of the Americans with Disabilities Act to help identify adjustments businesses could consider to accommodate their disabled customers.

When Jamie sees a need or an injustice, he springs into action.

Most recently, Jamie met with the local school board to point out seating deficiencies after installation of a $600,000 all-weather track at the football stadium eliminated access for those in wheelchairs.

Finally, he's working with community volunteers to foster improvements at local street fairs, such as implementation of a 36-inch path of travel. A guaranteed path of travel, he says, would allow visitors in wheelchairs to take part in festivities without putting them on a dangerously busy main street which doubles as a U. S. highway.

Jamie says it's a matter of following the law.

"They weren't allowing enough room. There needs to be a right of way as determined by Title 3, Americans With Disabilities Act, Access to Goods, Services and Public Accommodation."

Each day, Jamie sees the world from a different perspective than most folks, and he uses that unique view to improve the quality of life for those who face challenges.

He spends his time in a wheelchair, but nobody stands taller.

What exactly motivates him?

Jamie credits those he admires, including his parents and two older siblings, Edward, Jr. and Donna.

In their own way, they motivated him to work toward goals.

"It evolved over the course of my life through wanting to develop more independence," says Jamie, who found that he couldn't take part in many of the leisure activities pursued by his peers. Instead, he had to drop out. When recreation presented boundaries which Jamie couldn't oversome, he relented, and encouraged his friends to go on without him. "Most of my friends don't have disabilities. There were times I had to say 'you guys go ahead and enjoy yourselves.'"

But Jamie isn't really one to just 'drop out.' It's not his nature to do that. And so he sees a need and that need becomes his mission.

"I need to be proactive. If there is going to be change, then the change has to start with me. I'd like everyone with disabilities to develop the same attitude. We need more awareness. Wishing it to change isn't going to make it happen. Wishing a barrier to go away won't make it go away. Action will."

Jamie sees himself as an embodiment of that action.

"I want to be an advocate for change for people who don't have the ability to advocate for themselves. I want to advocate for people who can't. It's never been about me."

His mission impacts all people, including aging Baby Boomers.

"With age comes disability. It's pretty much inevitable."

Jamie says the general public needs to be educated about disabilities and made more aware and more tolerant. Many people are physically challenged even though they don't appear to be. He cites an example.

"Arthritis is a crippling disability but isn't an obvious one."

Jamie has one goal - to keep speaking up on behalf of those who seek equal access and equal rights.

But he doesn't necessarily see his life as extraordinary. Instead, he says he simply does what is right... and he vows to continue to stand up and fight on behalf of those with special needs. It's just part of the life of Jamie Folweiler - a very big part. And he says he had no plans to give up.

"I won't stop until my heart stops beating."

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