Swarens: Carmel parents' love has blessed thousands

This is a love story. A story about the special love of a mother and father for their special daughter.

It's also about how, over the years, that love has grown and multiplied. So that now, thousands of people in Central Indiana, including many of our most vulnerable neighbors, have found hope, encouragement and friendship because of that love.

But before we look at the good we need to look back on the bad. Because this is a love story that begins with a tragedy — one suffered 54 years ago in a hospital outside Chicago.

On the day Dick and Marcy Culter welcomed their first child into the world, something went horribly wrong during the delivery. Their precious baby, the child they would name Joann, was deprived of oxygen.

To the point that she suffered severe, permanent brain damage.

Dick and Marcy were immediately confronted with a soul-searching decision.

"They said at the hospital to put her away. She's going to die anyway," Dick Culter said recently. "We said, 'No, we're taking her home and keeping her.' All of this is because of Joann."

All of this — more than five decades later — is a 14-acre, $6 million retreat complex on the edge of Anderson, where each year hundreds of people with severe mental and physical disabilities gather to sing, dance, swim, find community and make friends.

The camp, with its rolling green campus, new swimming pool and state-of-the art meeting center, is a beautiful space. It's a "how soon can I come back?" kind of place where friendships are forged and nourished for years.

But the beauty of the SonRise Retreat Center, built with the help of Bethesda Lutheran Communities, goes well beyond the place. It's embodied by the people.

By the time I arrived on a recent Thursday, 25 or so campers, adults with serious mental and physical disabilities, had moved past initial fears and insecurity. They were excited, about the crafts, the singing, and, on that night, a dance. And by the chance to escape for a few days what is often a lonely life in a group home.

The campers, called "friends" at SonRise, had started to develop a close bond with their companions — volunteers, mostly college and high school students, who spend the week as personal assistants to each of the campers. That means helping with meals, dressing, taking a shower and using the bathroom. It also means patience and perseverance on days when the friends' many needs seem overwhelming.

Kayla Wentz knows just how tough that assignment can be. A junior at Anderson University, she was paired with a camper named Jessica during the week I visited. Jessica doesn't speak, and, with poor eyesight and hearing, is dependent on others for almost all of her care.

Kayla had stepped up to the challenge. As I watched that afternoon and into the evening, she seemed never to leave Jessica's side, leading her throughout the complex, most often while holding hands.

Yet, Kayla didn't talk about what she was doing for Jessica, but rather about what her new friend had done for her.

"She is teaching me a lot about trust," Kayla said.

I heard that sort of thing over and over again at SonRise. The friends, the people seemingly most in need, give as much as they receive.

Dick Culter smiles when he hears such stories. "It makes all those nights worrying about whether we'd make payroll worth it," he said about his career as a corporate executive.

It was Dick and Marcy's drive and determination, poured out over decades, that eventually made the retreat center possible.

When the Culters moved, with Joann and their younger daughter, from Chicago to Carmel in the 1980s, they didn't find much in the way of help for people with developmental disabilities. At least not from the state.

In those days, Indiana still frequently sent people with disabilities away to huge institutions. Community-based services were scarce, and for the most part places such as SonRise didn't exist.

One of the worst of those institutions was the Muscatatuck State Development Center, which when it opened in the 1920s in Jennings County was called the Indiana Farm Colony for the Feeble Minded. Back then, when children were born with mental or physical disabilities they often were shunted off to Muscatatuck. Photos from that time show scores of beds in massive wards.

Life for the children was often short, and frequently brutal for those who survived.

Even just a couple of decades ago, while Dick and Marcy were building the camping program that would eventually grow into SonRise, life for the developmentally disabled in our state was often frightening and painful.

In 2000, I wrote an investigative column for The Star that detailed horrible abuses inflicted by state employees on people with disabilities at Muscatatuck. Using state records, I documented the abuse of hundreds of patients — some burned with cigarettes, some locked in supply closets for hours. Dozens of state employees had been fired, and in some cases prosecuted, for inflicting that abuse.

The state finally shut down Muscatatuck in 2005, but not before Indiana paid millions of dollars in fines to the federal government because of the poor quality of care. Two years later, a similar institution in Fort Wayne, the last of its kind in Indiana, also closed.

The era of institutions has finally ended. But the hard work of providing a good life for the least among us remains.

Which brings us back to the laughter and excitement at SonRise. Thursday night is dance night at the camp. As Dick, Marcy and I watched, the friends and their companions spun in circles, lifted their arms and bounced to the beat.

There was joy on the dance floor. And it was a long way — thankfully, a world away — from the types of scenes that people with developmental disabilities so often experienced in our state in the past.

Dick and Marcy, now in their early 80s, could have been anywhere that night. In a condo on Maui. On a golf course in Florida. Aboard a cruise ship in the Caribbean.

But they chose to be here. Watching younger generations enjoy life. Enjoyment their hard work made possible.

I asked Dick about why they stayed, when Joann was a newborn, and now that she is a 54-year-old adult living in a Carmel group home.

"When she was born, we could've gone away and turned our backs," Dick said. "But that wouldn't have done any good. If I'd walked away, she would have been desolate.

"This is my life."

It's a life of service.

A life of love.

Swarens is The Star's Opinion editor. Email him at tim.swarens@indystar.com. Follow him on Twitter: @tswarens.