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Fábregas: Disabled Carnegie man's van up for vote

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Saturday, April 26, 2014, 12:01 a.m.
 

When he wants to leave his Carnegie house, Steve Spohn must rely on a transportation service for disabled people.

It's not bad, but it's not convenient. Spohn, who uses a power wheelchair and needs a ventilator to breathe, must tag along with other people. Trips that should take 10 minutes stretch to an hour.

You can't blame him for wanting to change that. Spohn, 33, wants his own wheelchair-accessible van. Listen to his story and it's easy to understand why — and root for him.

Spohn was born with spinal muscular atrophy, a genetic condition that affects muscles throughout the body and often causes problems with breathing. Despite having virtually no movement in his legs and a host of medical problems, he graduated from high school and obtained an associate's degree in information technology and a bachelor's degree in visual communications web design. He spends time writing and hopes to become a successful novelist.

“We all need something to drive us, something to make us get up in the morning, and for me that's trying to make the world a little better place in my own sector,” he said.

Spohn needs caretakers around the clock to handle his ventilator and other needs. When you're disabled, he said, everything turns to logistics, especially when traveling. It took days to plan a recent trip to Boston, including hours to rent a van and load it with equipment such as wheelchair batteries and accessories to operate the ventilator.

Many of his trips are part of his responsibilities as chief operations officer for AbleGamers Foundation, which supplies gaming technology to people with disabilities. As Spohn explained it, video games are an important outlet for people with disabilities because they provide a way to socialize. Though not everyone considers video games an essential part of life, he said, people with disabilities lack the freedoms others take for granted.

“I know what it's like to be in a hospital with nothing to do except stare at the ceiling and wonder what fate may come,” he said. “I know what it's like to be alone in a room full of people. That motivates me to do everything in my power to ensure everyone has access to the escapism of video games.”

Since it was created four years ago, the AbleGamers charity has given about 300 grants worth $80,000. Spohn says the group's website receives more than 3 million hits per month. The group has more than 30,000 registered members.

“We need the social networks to keep our motivation positive. Having these networks can make a difference,” he said.

Spohn is trying to get enough votes to win a van in a contest sponsored by the National Mobility Equipment Dealers Association, a nonprofit. His friends helped him make a video that you can watch at www.mobilityawarenessmonth.com . If he gets enough votes, he could become a finalist to win one of three vans, worth about $90,000 each.

Watch the video and you can see that Spohn isn't doing this for himself. He's advocating for others because he genuinely wants people to feel grounded and stable, and help them thrive. Watch and you might vote for him.

I did.

 

 

 
 


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