The ‘invisible’ people

By Hayley Paytes
UNC Co-Editor
the Durham VOICE

The oversized sweatshirt is faded grey with wear. The stitching on the front has started to unravel. But as Johnathon, 27, tugs it away from himself, the red script emblazoned on the front stands out just fine: “Dairy Queen,” it reads.

“I work there,” Johnathon said. “The one at Northgate Mall.”

Susan McSwain, director of the Special Needs Ministry at the Reality Center, dances with Matt, a TNL attendee. McSwain said, “For me personally, I didn’t have a friend in my life with developmental disabilities until six years ago. I didn’t know what I was missing. Since I experienced that, my life has grown indescribably. My life now has a richness to it. I know what I was missing.” (Staff photo by Hayley Paytes)

For Johnathon, who has a developmental disability, the “Dairy Queen” on his chest is a badge of honor. It sets him apart from his friends; it is proof that he is “not a knucklehead,” as is his high school diploma, which he has tacked to the wall in his group home.

A win, win, win

“How can you tell when someone has reached adulthood?” said Ron Reeve, chairman of the N.C. Council on Developmental Disabilities.

“There are a thousand different routes. But (a job) … is the ultimate goal. Having a career, having self esteem, becoming a taxpayer.”

Employment raises the self-esteem of people with developmental disabilities and allows them to contribute to society, to pay taxes and to become self-sustaining members of the community, hesaid.

“It is a win, win, win situation,” Reeve said. “A win for individuals, win for employers … and a win for the community.”

But less than half of adults with developmental disabilities are employed in North Carolina, Reeve said. And many of those who have jobs work in “closed shops,” which only employ people with developmental disabilities.

Effectively, those with disabilities are the most segregated group left in society, Reeve said.

More than 20 percent of people with developmental disabilities in North Carolina who receive residential services live in group homes with more than 16 people, which is seven percent higher than the national average. More than 25 percent live below the poverty line, according to a 2010 report from the N.C. Department of Mental Health, Developmental Disabilities and Substance Abuse.

“Sometimes it seems they are invisible,” said Susan McSwain, director of the Special Friends Ministry at the Reality Center, a ministry in Durham catering to people with developmental disabilities.

“I would love for people with developmental disabilities to have both productive paid and unpaid work and to see them integrated into society. They have so few opportunities for incorporating themselves into the world.”

All are welcome

Johnathon keeps a calendar on his cellphone. The phone is dwarfed by his hands, and his thumbs stumble on the keys, but once he gets going, he speeds backward through the months with alacrity.

The important days are marked in red. The good gets lumped in with the bad; red means, “Remember this,” Johnathon said.

Sunday, Oct. 14, got a red for the State Fair, where he planned “to ride 10 rides and then eat funnel cake, Milky Ways, chocolate chip cookies, Reeses, deep fried Oreos and three bottles of water.” The “then” is very important, he says. Otherwise he would be sick.

Early in February 2008, a date is marked in red, too.

“That’s the first time I went to the Reality Center,” he said.

The Center is important because it is place where people with and without developmental disabilities build friendships, McSwain said.

It seems simple, she said. But a lot of times, the only relationships people with developmental disabilities have are with paid caretakers.

Hakim and Cathy dance during the praise portion of “Tuesday Night Live.” Both are long-time attendees of the Center. (Photo by Hayley Paytes)

“For people with disabilities, a lot of our parents have shared the one thing they are not able to give them is friendship,” she said.

“Our call, our motivation, our foundation comes from the deep conviction that the reality of every person’s life is that they are loved by God. We want people to know that we are for them, and also that God is for them. Regardless of what the rest of the world might say, all are welcome here.”


‘Like a family’

“I think it is interesting also that the volunteers change, too,” McSwain said. “They come in really nervous, and they realize very quickly we have more in common than we have dividing us.”

At the beginning of each “Tuesday Night Live” gathering at the Reality Center at 916 Lamond Ave., everyone writes down their news for the week.

“Dana’s mom and dad moved into a new house. Now, they are painting their old house,” reads one.

“Kendra went to visit her mother on Friday and her brother and her two-year-old niece,” reads another.

“Stephen has been playing golf and can drive 150 yards. He qualified for the Fall Games and carries his own golf clubs.”

People with and without developmental disabilities lay their lives bare on paper. Their stories blur together as one after another is read.

They care about the same things, and they enjoy the same things.

Jon (left) and Ricky jump around to the chorus of “Trading my Sorrows (Yes Lord!). Jon said his favorite part about “Tuesday Night Live” is the friendship. (Photo by Hayley Paytes)

“It’s fun to get out with my friends,” said Jon, who has a developmental disability and has been coming to the Center for four years.

They all love the pizza, the dancing, the singing, the community.

“We teach them, and they teach us,” said Leah Broadwell, a Wake Tech student and volunteer.

“It is like a family here.”

“I think we experience a little utopia on Tuesday nights,” McSwain said. “It seems like what the kingdom of the world is supposed to be like. People who get involved as volunteers don’t experience the hard part. This is such a joyful, welcoming environment.”

‘I can go anywhere’

After the “Tuesday Night Live” event ends, Johnathon walks to Durham Station to catch the No. 16 DATA bus home.

The bus comes once an hour, so he has to be careful not to miss it and break his 9:45 p.m. curfew.

He looks forward to the next Tuesday, a “Pass the Peas” family-style dinner at Blacknall Presbyterian Church. And he talks some more about the State Fair. The State Fair is always fun, he said, even though he would have to go alone.

His friends at the group home, Chas and Gary, couldn’t go, he said.

“Chas, he can’t be by himself. He’ll get scared and cry. He has to be with somebody. He’s not independent. Gary, he’s independent, but he doesn’t like the State Fair. ‘There are too many people,’ Gary says.”

Samuels, though, loves the Fair and is independent, so he could go.

He shows off his discount bus pass, encased in plastic, in a creased leather wallet.

“For $1, I can get an all-day pass,” he said. “I can go anywhere.”