People Who Inspire: Ted and Wendy on being mobile with Spina Bifida

ted and wendy

Ted Pence and his girlfriend Wendy Garofalo were born with Spina Bifida – the most common permanently disabling birth defect in the United States. According to the Spina Bifida Association, this means that before birth, they had a “split gene” causing the spinal column not to close all the way. The condition causes paralysis and other complications.

Ted is 53 and Wendy is 48 years old. Both live independently, facing challenges that have made them stronger and more grateful.

The Kindness of Others

When Ted was in high school, having Spina Bifida meant that getting up to the second floor for classes with crutches and leg braces up to his waist would be a daily challenge. But he never worried about it.

In 1975, there wasn’t an elevator at Geibel Catholic Jr/Sr High School, but Ted said there was always someone around who would help. “A couple of guys would carry me up the steps. One of them always seemed to be Jeff Brooks, a student who, I didn’t realize at the time, was nearly blind.”

There also weren’t handicapped accessible vans then either so Ted’s mother drove him to school every day. He had to transfer to Mount Pleasant Area High School when her new job made the commute too far to manage every day.

Wendy has been confined to a wheelchair since the age of twelve. She also relied on the kindness of others as she navigated the hallways and steps of Derry Area High School.

The Mobility Challenge

Mobility is a challenge, but it hasn’t stopped Ted and Wendy from enjoying outings. Over the past 24 years together, the couple has managed trips to Pittsburgh Pirate games. Ted would help Wendy transfer from the wheelchair to the passenger seat, then lift Wendy’s wheelchair into the trunk of the car before he got into the driver’s seat.

When an accident put their car out of commission, the couple found themselves relying completely on family, friends, and public transportation to go places, including the grocery store and doctor’s appointments. Having a handicapped accessible van was just a dream. “We checked into it, but it was too expensive,” he said.

Hope was on the horizon when Ted and Wendy entered a contest earlier this year being put on by the National Mobility Equipment Dealers Association. Four handicapped accessible vans were being given and the field of candidates encompassed all of the U.S. and Canada.

“The voting came through social media with the top 10% becoming finalists, based on their stories and the number of votes each person received. To get this van would mean more freedom for us to get out and do things,” Ted remarked.

While they made it to the final round, voting by a panelist of judges finished out the competition with Ted and Wendy not being named a winner of a van. With no personal transportation and not having the funds to purchase a vehicle, all seemed lost – that is until classmates from Mount Pleasant High School came to the rescue.

Game Changer

“Paul Kraisinger, a classmate who is a dentist, contacted me on Facebook wanting to help. He found a 2007 van at MobilityWorks, a company that makes vans handicapped accessible.

To help raise the $25,000 it would take to get the van, Dr. Kraisinger started a fundraising campaign at his office called “Smiles for Ted” and donated half of the cost of teeth whitening towards the purchase of this van,” he said.

Another classmate started a youcaring.com crowd funding campaign, which has since closed, and his MPAHS classmates sold tickets before a recent class reunion to raise funds for the cause.

Through their efforts and Dr. Kraisinger’s generosity, Ted and Wendy got the van they needed.

Overwhelmed by their kindness, Ted remarked, “The van has an automatic door and ramp. It also has a power-pull system that connects to a wheel chair, pulling it into the van. When Wendy gets in, her wheelchair is locked into place. My area on the driver’s side gives me enough space to get in and position myself forward.”

He added, “This is a game changer. The van has enabled us to go to sporting events, movies and out to dinner.

The Biggest Challenge

Although Ted and Wendy are mobile once again, they still face challenges that can limit their abilities to make the handicapped accessible van do what it was intended to do – give them access. Wendy explained, “We both volunteered at a local hospital, but aren’t able to do so anymore because the parking spaces aren’t wide enough to put the ramp down.”

In addition to parking spaces that are too small, Ted commented that they also sometimes find that there aren’t enough spaces to go around. “I guess this is our biggest challenge. A restaurant may only have four spots and all are taken. If we would park in the regular spot, we’d have to go to the end of the lot to have room for the ramp – then it would be too far to walk.

One time someone parked next to us in the striped off area when we were inside a restaurant. We couldn’t leave because he had taken the space to put the van’s ramp down. We went back inside to get the manager and the fellow had to move his car.”

When they are parked, getting through doors can be a challenge. Wendy commented, “Big box stores have automatic doors but little strip mall stores do not and those doors are heavy. Also, some restaurants have double entrance doors, which make it difficult to get in. Once you’re in, the space between the doors isn’t always wide enough to navigate.”

Once, I was in a restaurant bathroom where they had a partition. There wasn’t enough room for me to get into the handicapped stall. The last time I was there, they had made a change and it was better.”

Both Ted and Wendy feel more needs to be done to make spaces and places handicapped accessible. They would like to help organizations do a better job accommodating people with disabilities.

Having the ability to be mobile, Ted said, “is freedom.”

Celebrating Life

When I asked him what place they would like to go to, but haven’t been able to yet, Ted answered, “We’re big Pittsburgh Penguins fans, but right now, the ticket price is out of reach. When they were at the old arena, we would make going to games our birthday presents. Wendy’s birthday is in November and mine is in April, so a Penguins game was always our way to celebrate,” he said.

For now, the couple has a lot to celebrate. Ted said, “We’re just so grateful to have each other, friends who care so much, family, and above all – life.”

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