Staff writer
Matt Eddy decided if he got hit by a truck, then so be it.
At least he was giving it a shot.
The 31-year-old from Boston has suffered from a form of muscular dystrophy his entire life, and has to have a caretaker with him nearly 24 hours per day.
So when he decided in June to ride his electric wheelchair across the country to raise awareness for people living with physical disabilities, he knew it was the right choice.
Eddy began the trip June 30 along with his caretaker Ron Steenbruggen, Ron’s daughter Danielle, and friend Sean Wright, and passed through Marion this past weekend, nearly halfway done with the trek, which finishes in Long Beach, Calif.
They travel in a van and Danielle Steenbruggen and Wright drop Ron and Eddy on the road about 30 or 40 miles from where they will set up a campsite.
Eddy then rides his chair and Ron either rides a bike or walks next to him, providing care the same way he has the past eight years.
“Kansas is great,” Eddy said. “It’s not as flat as I expected. There is a lot of cool terrain.”
Had Eddy decided not to take this trip, he would be home in his wheelchair not doing much of anything according to caretaker Steenbruggen.
Now he is experiencing life. He also runs the group’s web site and provides a daily blog when they have Internet service.
“Matt said, ‘If I die going across country, that’s my life,’” Steenbruggen said. “At least he is living his.”
The group said that is exactly what many people with physical disabilities are not allowed to do.
Many go to institutions where some are not even allowed to leave their rooms.
Those living there are more likely to get sick according to Steenbruggen, and unreported abuse is rampant.
Matt and Ron began the charity, “Matt’s Place,” to raise money to build an 8-10 unit apartment complex in Boston for people with physical disabilities.
There would be a staff with backups always on hand, and the residents would be allowed to live a more open life.
“We’ll start there and hopefully expand,” Danielle Steenbruggen said.
“Rollin’across America”
The trip never should have happened.
When he was 23 Eddy was given six months to live, and Ron Steenbruggen thought he would be with him for only two weeks.
Eight years later, Steenbruggen took a leave of absence from work and is now in the middle of Kansas on his way to the West Coast.
Eddy, who can only lift one finger, is on life support and breathes through a ventilator, is thankful to experience the country while trying to spread their word.
“We’re going a lot quicker than we expected,” he said. “It’s incredible though.”
Ron Steenbruggen said it was hard spreading their concern for people with physical disabilities by just starting up a non-profit organization.
The trip was a way to make a statement.
Although still largely ignored by the Boston media, they have been interviewed by numerous newspapers across the country, appeared on some television news stations, and have two clips on youtube.com.
“We’re pretty much getting through on donations,” Danielle said.
While they don’t ask for donations, Ron said some people who don’t have much more than the shirts on their backs have offered money.
Steenbruggen told one woman, who he could tell did not have a lot of money, to hold on to hers because “we’re going after the big boys.”
He said the federal government spends $3.97 on health care for those with mental illnesses, for every .90 cents on those with a physical disability.
Steenbruggen said he gave his information to the Barack Obama campaign when he ran into them in Ohio.
However, he doesn’t want to limit his information to just politicians.
“All it takes is one person,” he said. “You never know who might be reading.”
For those involved with Matt’s Place, any kind of publicity is good publicity.
They have met some opposition from some who said if they build small communities or apartments for the physically disabled, it will set the medical profession back 30 years.
Ron disagrees.
“It’s a statement that if I can take care of him in a tent on a roadside, then why does he need to go to an institution?” Ron asked.
At one point Monday, a semi on U.S.-56 near Canton sped by and blew Eddy’s hat to the ground.
It was a reminder just how close to the road the two were.
As Steenbruggen picked up Eddy’s hat and placed it back on his head, they kept moving forward.
Each step also was a reminder just how close to their goal they were as well.
For more information on Matt’s Place, visit www.officialmattsplace.org.