A Unique Coffee Bar Raises Autism Awareness
Story and Photographs © Robin Rayne Nelson/Zuma Press
A mother’s anguish as her child is placed in a nursing home
Story and photographs © Robin Nelson/ZUMA Press, All Rights Reserved
Powder Springs, GA — Nola Sayne greeted guests at the memorial celebration for her son Zachary, who died a few days into 2013.
Few of the guests had actually known Zach. He died where he had lived for the last 15 years – in a nursing home 200 miles away from his Georgia family.
Nola wanted the afternoon to feel more like an open house than funeral. ”It’s to be a celebration for Zach,” she said.
Nola’s personal knot of emotions was a twist of grief, sadness and relief, all tinged with an undercurrent of guilt for placing her son in a skilled-care facility when he was ten years old.
“I always felt I should have done more to keep him home and care for him here,” she said quietly, even though she admits she had few options at the time.
“Zach was born five weeks premature. It was an emergency c-section and I was told everything was okay. I later learned he was born ‘blue’ and they had to give him oxygen for ten minutes to bring him back,” she said.
Nola brought her son home unaware of any problems. But Zach was her second child and she soon knew something wasn’t right.
“He didn’t make eye contact, he didn’t try to hold his bottle or try to lift his head,” she recalled. “His doctors eventually said he had spinal meningitis. After I got his medical records from the hospital we went to a see a neurologist. The doctor walked into the room and said, ‘He has cerebral palsy.’ I was 23 years old. I didn’t even know what that was.”
After several years of therapy, Nola enrolled her frail son in a special school for severely handicapped children. He never crawled or lifted his head. Typical milestones in child development never arrived. Within a year he began having seizures.
By then, Zach’s father was out of his son’s life. “He couldn’t handle it. He was never involved with his son,” Nola said.
“Zach eventually was able to do a few things that indicated he understood me. He could push a button or move a joystick with his hand. He responded to what I told him and he knew when I scolded him,” she said.
Zach laughed when she tickled him or whispered in his ear. “I used to lean over and say ‘Zackie boy, Zackie boy’ and he would just laugh and laugh. He was always wanting me to hold him or touch him. But he never spoke.”
While Zach was at the special school and an after-school daycare program, Nola was able to work; first as a customer service representative, later as a legal secretary.
“Whenever I applied for a job I explained my situation as a single mom with a seriously handicapped child. There were many times I had to leave early. I was always in trouble in my first job for leaving early or missing work because of Zach’s health problems. My other bosses were very understanding and kind.”
Caring for Zach when he was home was a full-time job in itself.
Nola’s son Josh was older by 22 months. “He learned to be very independent. I taught him to cook and do his own laundry when he was nine. Josh had to take care of himself because I had to take care of Zach.”
“I was Zach’s arms and legs and voice. If I fed him I couldn’t put him in a high chair because he’d fall over. So I sat him in my lap to feed him. When he was sick he slept on my chest so could feel him. I’m still a very light sleeper.”
“I carried him everywhere — to the video store, the grocery store, everywhere we went until he was 10 years old. He only weighed 30 pounds.”
Zach had a fragile immune system and was prone to constant infections. He had pneumonia numerous times, seven in his tenth year alone.
“That’s when doctors realized he had been aspirating food into his lungs when he swallowed. Part of it would go into his esophagus but part of it went into his lungs. The doctors decided he needed a feeding tube.”
After the tube had been placed, Zach gained nearly a pound every week. Lifting and carrying Zach soon became a struggle for Nola.
The day care center’s director called and said the staff was uncomfortable with Zach’s feeding tube. They wouldn’t keep him anymore, even though they had cared for him since he was six months old,” Nola recalled.
“The other daycare centers in the area refused to accept him,” Nola said. ”My mother had been helping with Zach for all these years but she moved to Arizona. Zach’s father was still completely out of the picture. My support was gone.”
Nola placed newspaper ads hoping to hire someone who could care for him after school. One woman, an empty-nester, agreed to take the job. It didn’t last long.
“She called me after the first week and said, ‘I can’t do this anymore. Please come get him.’ I drove to her house. Zach was in his little carrier, sitting on the front porch. The woman opened the front door a crack and was crying. She said, ‘I’m sorry’ and closed the door. That was it.”
Nola tried for weeks to find another caregiver for her son but had no luck. Her understanding boss graciously allowed her to bring Zach to work with her.
“It was a metal fabricating plant. Zach slept on a pallet near my desk while I worked. It was noisy and dirty but the guys that worked there were wonderful to us. They were like brothers.”
Nola knew it couldn’t continue like that indefinitely. She moved in with friends to save money. She applied for Social Security benefits to help with Zach, but her application was denied.
“I didn’t have day care anymore. I didn’t have anyone to watch him. I had to figure out what to do. Zach had gained nearly 25 pounds because of his feeding tube. He had grown out of his wheelchair. And now every time we went somewhere I had all this other stuff to take, the feeding pumps, the equipment, all his medicine. We became even more confined.”
“A social worker asked if I’d ever thought about placing Zach. I didn’t know what that meant. She said, ‘You know, putting him in a facility.’ I told her I didn’t know I could do that.” The social worker mailed Nola a list of nursing homes in the southeast that accepted children.
“There weren’t any facilities in Georgia that would accept children. There was one in North Carolina that had a long waiting list. There were some places in Florida. Alabama had two that were specifically set up to care for disabled children,” Nola recalled.
“I have to admit that part of me was relieved. I felt like I’d had a newborn with me for ten years. This home had 24-hour nursing care and I thought they’ll take care of him the way he needs to be cared for,” Nola recalled.
When the time came to move Zach into the facility, her friend drove Nola and her boys on the three-hour journey.
“It was absolutely horrible. I felt like an awful mother but I didn’t know what else to do. I had no options. My friend kept saying,’ This is the right choice. The kids at this place are always clean, most of the staff have worked there for years and they obviously love these kids.’
“And she asked me, ‘What are you going to do if you don’t do this? Do you have a bunch of money to pay a nanny or nurse to watch him?’ I didn’t.
Nola, Josh and her friend got Zach installed. His ward was a large room with several beds and large cribs, medical equipment and stuffed animals. The home accommodates 54 children.
The drive back to Georgia was somber. “My friend and I cried the whole way home,” Nola said.
Her tears, sadness and self-doubt festered in the weeks that followed. Her doctor prescribed anti-depressants. She began to drink.
“I felt very alone. I learned later that Zach had grown very depressed too. At first I called every night and talked to him. I drove down every two weeks, sometimes every week for a day or two. And Josh blamed himself for his brother moving to the home. He said if he had helped more at home then Zach could have stayed with us.”
Nola remarried a year after Zach was moved to Montgomery. She had known Jeff since high school. He was totally supportive and they often drove together to visit Zach.
“I felt like nobody else understood. Having a special needs child, you’re already in a small minority. When people learn you’ve placed your child in a nursing home they looked at you funny so most of the time I tried to avoid talking about it. They wonder, how could a parent do that?”
“It was too much to explain. People would ask me if I had kids. If I said yes and they asked their ages, they would say, ‘oh yeah, those high school years,’ or bring up drivers licenses or ask about college. It would lead to questions I didn’t want to answer. It was just easier to not talk about it.”
The weekly drives to Montgomery eventually became every three weeks. Usually Nola drove alone. Sometimes Jeff joined her. Now and then Josh would come along.
When Nola arrived on Saturday mornings she would tenderly brush Zach’s hair and as she talked to him. Sometimes he would open his eyes when he heard Nola’s voice. Mostly, Zach slept.
Nola routinely checked the feeding pumps that kept him nourished. She fluffed his pillows and made sure he was as comfortable as possible, carefully lifting his brittle and atrophied arms and legs. Sometimes Nola or Jeff lifted him in his wheelchair for a ride to the family room where they could take turns reading children’s stories to him. When weather permitted, they visited the home’s courtyard for a change of scenery, always mindful of bright sunlight’s effect on Zach’s pale skin and sensitive eyes.
In all the years of visits, the goodbyes never ceased to be difficult. Nola would kiss Zach’s forehead and whisper ‘I love you’ in his ear. Zach would sometimes respond with a blink of an eye. As dusk approached, Nola would head back to the interstate for the long drive home, always with a heavy heart. She was grateful for the excellent care her son was receiving, but in recent years there was a constant voice in her head urging her to bring Zach back to Georgia.
Zach had been in Alabama so long that he was now a resident of the state. Nola had to file for guardianship in order to move him back. In the fifteen years since she placed Zach in the home, not a single skilled-care facility for children had opened in Georgia. “Nothing had really changed. The waiting list for Georgia’s Medicaid Waiver that provides funds for disabled residents had grown to nearly 6,000 names,” she said.
With years of inactivity, Zach developed scoliosis that created problems with his lungs and heart. His breathing became labored. There were numerous visits to the Montgomery hospital’s emergency room. Nola always stayed with him, often for days at a time. “I wasn’t going to leave him in the hospital without a voice,” Nola said. “Bad things happen when you can’t talk.”
In the last few months as Zach’s condition deteriorated, Nola sensed the end was near. “His fingers were touching his arm and his toes were completely curled under,” she said.
“I wasn’t praying for healing anymore. I was praying for God to pretty much just take him. I had talked with Zach on some of his hospital stays when it didn’t look good. I held his hand and I told him, “You don’t have to stay here. It’s okay. You can let go.”
“At Christmas, we drove down to visit and bring his gifts. They were brightly colored pillows and pajamas. He had quite a pillow collection since that’s how we shifted his position in the bed, with pillows.”
The next week, Zack was back in the hospital for more breathing difficulty.
“The doctors couldn’t find anything specifically to treat but wanted to keep him in the hospital just to be safe. I fought that,” Nola explained. ”His condition wasn’t going to improve. They couldn’t cure him. If he stayed there he would be on oxygen 24 hours a day and would just live there. They were constantly doing IVs in his armpit because they couldn’t find veins, it was horrible.”
“Zach was miserable in the hospital. He wanted to be back in the nursing home. I told the doctors, ‘If you’re concerned about liability don’t worry, I’m not going to sue anybody. I reminded them of the ‘Do Not Resuscitate’ order I signed. I said, ‘We can’t keep Zach around forever.’ I didn’t want anyone to be a hero. Zach was soon back in his own bed in the nursing home.”
Four days after New Years, nursing staff called to tell her Zach tested positive for flu. His doctor assured her Zach would be treated in the home rather than subject him to another hospital stay. Nola was grateful. She planned to drive down first thing the next morning.
The call at 4 a.m. jarred her awake. “Zach’s breathing had become much worse,” she said. ”The ambulance was called to rush him to the hospital. I cried and called my mom, who had recently moved back to Georgia. She agreed to go with me immediately.”
The nurse called again twenty minutes later. Zach was gone. He died before the ambulance could get there. It was over.
“It was the call I had imagined I don’t know many times, wondering how it would come,” Nola reflected. “I wanted to be there when he died. But he didn’t die alone. He died in his bed, at home, where he was comfortable.”
It will take time for the sadness and the grief to lift, and the guilt that comes with placing your child in a nursing home.
“I did everything I knew to do,” Nola said. “But I will always ask myself if I couldn’t have done more.”
Nola and Zachary Sayne’s story is featured in ‘Not Home,’ a documentary on children who live in nursing homes by filmmaker Narcel Reedus. I was privileged to serve as the still photographer for this project.
Story and Photographs by Robin Nelson
Milton, GA – Meggy Kay felt like a princess. Her best friend and high school classmate Alanna Christian was giddy with excitement. The girls watched from Alanna’s bedroom window as their tuxedo-clad ‘Prince Charmings’ approached the house with corsages in hand. It was prom night. This would be a most special occasion — and not just for the students.
“It’s a rite of passage as the kids make that transition into being adults. For parents of children with challenges and developmental disabilities, it’s a milestone as well,” admits Meggy’s dad, Kenny.
Meggy and Alanna are both seniors at Milton High School. They’re both in the special education class because of intellectual challenges that eventually become apparent, but that doesn’t stop them from having the same dreams and goals as their fellow students in the regular classrooms.
“Meggy is who she is,” explains Kenny. “As for her disability, it’s a little of this, a little of that. Doctors have mentioned autism. There’s no physiological reason for her intellectual disability. We don’t have a label for it. I think it’s better that way because Meggy is not defined by a disability. She’s more like the other girls than she is different.”
Meshiel Christian, Alanna’s mom, nods her head in agreement. Meggy and Alanna have been best friends since they met in a self-contained sixth grade special education classroom. Alanna, 20, was diagnosed with a developmental delay and mild cerebral palsy. She experiences autism to a slight degree and at times seems quite shy.
“Alanna knew all about what to expect for the prom. She knew about getting her nails done, the dress, a limousine, and dinner reservations, all of it. Alanna and Meggy are just like the other girls in so many ways,” Meshiel said.
“I had a moment when tears came to my eyes when I saw her all dressed up, waiting expectantly for her date to come calling,” recalled Meggy’s mom, Mindy.
“I was a granny-knot of emotions. I said, ‘where’s my little girl?’ but she’s growing up. For parents raising special needs children — and especially girls — it was a ‘wow’ moment. I was so happy for her because she had the opportunity to go to the prom with her friend Jimmy and just be like the other students. These kids have all been a part of each other’s lives. They were all in there together enjoying a special night. Nobody’s making a fuss because these students have a developmental challenge.”
Jimmy Rice, 18, experiences autism. He has one more year in the school’s special education program.
“My son has never mentioned that he feels different from other students,” says his dad, Charlie. “He has lots of friends in the school. They might see him in the hallway looking confused once in a while and they’ll ask, ‘Whatcha need, Jimmy?’ They’ll get him pointed in the right direction. They don’t treat him like a child. They include Jimmy in activities because he’s their friend, not because it’s ‘poor Jimmy.’ Nobody’s feeling sorry for him. And that’s the way it ought to be. Jimmy is just so happy-go-lucky and he has friends who like him for who he is.”
“Jimmy had mentioned the prom a few months ago, but he didn’t have a date. And then Meggy asked him to go with her. He was so excited to be going,” his mom Cindy recalled.
“His tuxedo was actually his high school band uniform. He’s a percussionist in the band, and he loves it,” Charlie said. “He chose a different cummerbund and shirt, and then Jimmy and his mom sat down at the computer to order Meggy’s corsage online. He took the initiative.”
Alanna met her date Elijah two years ago at an area dance organized for students with disabilities. Elijah is 16 years old and a sophomore in another school. Though he experiences Asperger’s syndrome that affects his ability to socialize and communicate with others, his parents only told him of his diagnosis a year ago.
“Beyond the name, nothing has changed,” his dad, Terry Walker explained to Elijah. “I said, ‘Son, you think different from other kids, but that’s all.’ Sometimes if parents make too much of a disability the children will see themselves as different, maybe use it as an excuse or a crutch.”
For Meggy, Alanna and their moms, Prom Day was complete with manicures and pedicures, gowns, high heels, mixed with the aroma of hairspray and perfume.
Meshiel Christian styled the girls’ hair in her home-based salon. Alanna soaked up the attention, the hair and the makeup like a sponge. “She wants to learn to do hair when she’s done with school,” Meshiel said
Not so much for Meggy, though.
“Mom said I had to wear makeup. I did my own lipstick,” Meggy said proudly. “Except I missed a spot.”
Mindy did her best to fix it. “Meggy’s not a real girly-girl, she doesn’t like makeup much. She’s more into baggy short and t-shirts. But I try,” she said as she smoothed a smudge of eye shadow Meggy had also applied.
“I had to wear my heels around the house to practice walking,” Meggy said as she struggled with her new shoes. “I had to wear them to the dinner table. And while washing dishes.”
Alanna was completely at ease in her gown and silver sandals. Her neighborhood girlfriends stopped by her house to see Alanna and Meggy dressed up. They gushed as how nice the girls looked. Alanna and Meggy both beamed. Cameras flashed. Then it was time for their grand entrance down the stairs.
Jimmy and Elijah stood proud at the front door, their dates’ corsages in hand. Terry straightened his son’s tie and reminded him of proper etiquette. “How to be a proper gentleman has become a lost art. But it’s not lost on him. In my mind, I’m so proud of him because he’s a sophomore going to the prom with a senior,” he said.
“Society puts it in your head that persons with disabilities need to be treated different. Keep them separated from the others to keep them safe. You can hear it when people talk to someone with a disability and they talk down to them as if they were a small child. And then they talk louder and slower to them. We shouldn’t do that, but people often do,” he observed.
“Jimmy looks so nice in that tux,” Meggy said. “When I came down the stairs I didn’t recognize him. Usually he wears t-shirt and jeans but tonight he looks like a man!” she whispered to her mom.
The time was growing near for the couples’ departure. The ‘limo’ was waiting. There were dinner reservations before the prom. The young women and their dates stood outside Alanna’s home and posed as a friends, parents, neighbors — even a former teacher — gathered with cameras for what seemed like hundreds of snapshots. It was a scene undoubtedly replicated at thousands of homes across the country on prom night.
Then it was off to an evening without parents, in a massive hall that had been magically transformed into a wonderland of laser lights, glitter balls, streamers and elaborate decorations that prom committee members spent weeks making after school. It was a night of loud music with hundreds of their classmates dancing, laughing and mingling during a tender time somewhere between adolescence and adulthood, spiced with formal gowns, tuxedos and sparkly shoes – and a slow dance or two. Meggy, Alanna, Jimmy and Elijah were right in the middle of it. Prom night would be a precious memory for all of them. No labels needed.
In 1933, the federal government’s creation of the Tennessee Valley Authority helped bring electricity and economic development to much of rural Tennessee. It was steeped in controversy when it began.
In the wake of Japan’s Fukushima nuclear plant disaster in March, TVA’s controversy continues to brew.
Story and Photographs © 2011 by Robin Nelson/ZUMA Press All Rights Reserved
Loudon, TN — Mansour Guity sipped his morning coffee on the deck of his waterfront home and gazed at the peaceful Tennessee River below. “Yes, it is beautiful. I am very blessed,” he said.
But Mr. Guity wakes every day with an unrelenting concern about the Tennessee Valley Authority’s nuclear plants in this region of the south. Especially the Watts Bar reactors, 31 miles downriver from his home.
“It is an accident waiting to happen,” he says of the facility, mired in controversy since on-and-off construction began in 1973. “There is a serious potential for trouble still embedded within the structures. It is not a matter of ‘if’ something happens, but ‘when’ something happens,” he warned.
He speaks with authority. And more than a little anger.
Guity, 69, a senior nuclear engineer, was lead quality assurance auditor for design and construction at the Watts Bar site in the late 1970’s. Not long after the Three Mile Island nuclear accident in 1979, Guity was handpicked to join the now-defunct Nuclear Safety Review Staff, which was responsible for reviewing multiple nuclear power generators in the TVA fleet.
Mr. Guity said he discovered unauthorized shortcuts and inadequate craftsmanship in numerous aspects of construction at the Watts Bar site.
“I exposed significant nuclear safety problems in my reports, many of which remain unresolved today,” he said.
“I found cables that had been bent beyond their permitted radius. Other cables, critical to the operation of valves and switches in the reactor and containment building, had been vertically suspended without any support. Some had been pulled and stressed beyond their limits. Nobody really knows how badly the cables may have been compromised, and they are the nerve system of a nuclear power plant. There were problems with welds, and concrete walls that were too thin, and just a lot of poor work.”
“I was asked to serve on the NSR staff because of my experience and because I said it like it is. But the TVA didn’t like what I had to say,” he continued. ”My reports that exposed serious problems were often ignored.”
“Regardless of whatever happened in the 70s and 80s, it’s a new era today,” insists Ray Golden, a TVA spokesman. “There probably are still some long-standing allegations that have not been closed out,” he admitted. “But, before Unit 2 comes online, before we get a license to operate, there will be an exhaustive review by this company and the Nuclear Regulatory Commission.”
The NRC has the exclusive authority and responsibility for the safety of the American public when it comes to nuclear power, Mr. Golden said. “They don’t take that lightly. The NRC has the expertise to come in and inspect every aspect of the site — the licensing documents, the cables, the welds, wall thicknesses, all of it. They will make the ultimate determination if a license should be granted or not.”
“When information came to light about construction quality problems at Watts Bar in the 80′s, the TVA and NRC investigated them. I can’t speak to the rigor of those inspections; I would hope that they were very rigorous. People make allegations or raise concerns and those allegations are investigated. Sometimes to their satisfaction, other times not to their satisfaction, and they tend to want to retain their issue,” he noted.
Mr. Guity eventually went public with his reports. He was the primary witness in a 1986 congressional investigation into the TVA.
“Twenty years ago, the NRC declared Watts Bar to be the worst nuclear plant ever designed and constructed in the world. It took a lot of courage for the NRC to come up with that evaluation,” he said.
It was the cloud of collusion, corruption, fear and intimidation during that time that troubled him the most, he said.
“Third-party inspectors had the responsibility to examine every facet of construction and write their reports. Everything had to meet strict guidelines. Inspectors were often quietly ordered by their supervisors to accept things that didn’t meet quality or nuclear safety compliance requirements,” he said.
“If something wasn’t right and an inspector made note of it in his report, there was a TVA manager who called the inspector’s supervisors and strongly encouraged them to ‘rein in’ that inspector. Inspectors sometimes changed their reports because they were in fear for their jobs,” he said. “I couldn’t trust their reports because they had been compromised.”
“This was all happening during a time when anyone who spoke out was fired. The inspectors were so scared they were afraid to talk to me on the telephone,” Mr. Guity continued. “There were times I had to drive two hours away to a remote location or telephone just so these inspectors could feel safe in telling me what was really going on.”
“The TVA knew what they were doing. They were under the gun to reduce completion costs and get the thing running to generate electricity. Many of the problems are buried beneath 30 to 40 years of construction,” he said.
Construction at Watts Bar stalled in 1986, for both economic and safety reasons. The region’s demand for more power had slowed. The downtime was used to correct problems, TVA officials explained. It would be eleven years before Unit 1 was completed and licensed to operate in 1996.
Unit 2’s construction resumed in 2007. Expected to be fully operational by the end of 2012, it will be the first new civilian reactor in the U.S. to power up since Japan’s Fukushima nuclear power plant disaster in March.
After his testimony in Washington, D.C., the Nuclear Safety Review Staff was eliminated in a TVA reorganization. Mr. Guity was reassigned to a new job in the TVA offices in Chattanooga, an hour further south.
Stripped of any real authority and reporting to his new post without defined job responsibilities, Guity found himself with little to do except read newspapers, industry journals and talk on the telephone with his friends. ”I was a workaholic. Now I had nothing to do. If my supervisors did give me something to evaluate I usually found flaws – and that was the last thing they wanted,” he said.Depression eventually took its toll on Mr. Guity, forcing him to go on medical disability in 1987. A Department of Labor investigation later supported all of his allegations.
“When Mansour Guity and other whistle blowers came forward in the mid-eighties, the TVA had represented to the NRC that Watts Bar Unit 1 was ready to go online. When the NRC started looking into the allegations, they said ‘no’,” recalls Steven Smith, a Knoxville, Tennessee veterinarian who left his practice in 1999 to lead a clean energy initiative.
“Not only did they not let Watts Bar come on, they shut down all of TVA’s reactors for three years,” he said.“The TVA is very arrogant about the way it approaches nuclear power. They feel like they can do anything. They have amnesia about some of the historic issues that have plagued the agency. It is their overly aggressive approach to nuclear power that led to TVA having the largest debt of any utility in the country,” he added.
“During that eleven-year period, there were certain systems they still had access to that they fixed,” he said. “There were others they claimed were not part of the critical paths for shutting the reactor down that were likely not addressed. I think some of those things were baked into the reactor, which are now difficult to reach.”
“To be fair, Unit 1 has run reasonably well since it came online 15 years ago,” Mr. Smith continued. “It is unclear if Unit 2 will do the same. It is also unclear if some of those fundamental problems that were identified during the construction phase will be able to withstand the full demands of the reactor when it goes online. Did they only correct some the surface things? Over time, will some of those fundamental flaws in construction manifest themselves before the operational life of the reactor is over? That story will only be known after forty or sixty years.”
“These reactors are terribly unforgiving if they get out of control. It is definitely an outdated design. The systems in these older reactors have multiple paths for failure. They are dependent on a number of human factors, particularly in how they are shut down,” he said.
The Fukushima disaster in Japan shook the nuclear power industry to its core, Mr. Smith noted. “It was a jarring demonstration of just how quickly cascading events can cripple a nuclear reactor,” he said.
“To the industry’s credit, they do build in redundancies. ‘Defense in depth’ means if multiple things go wrong, you are still able to shut the reactor down safely and maintain control. But it should make everyone question the normal thinking about how much defense in depth you have.”
“At what point have you done enough defense in depth to where it is safe? The industry will say what they’ve done in the U.S. is enough, anything else will just add cost,” Smith said.
“Can I say Watts Bar will be the reactor that has a problem? That’s hard to say. But the longer they push that reactor and the longer it operates, the greater the chance for some of those baked-in issues that Mr. Guity identified to become a problem.
“The way the NRC is regulating, allowing these reactors to run longer than they were designed to do, allowing license extensions, allowing the utilities to make them run harder than they were designed to do, dialing back on regulatory oversight reviews, I think is a prescription for an accident. Bringing on Unit 2 next year doubles the possibilities that some of those fundamental problems could manifest themselves,” he said.
“The regulators and the general public should be asking a lot of tough questions. A big question is, will the NRC take the lessons learned from Fukushima, or will they give Watts Bar a pass?”
Mr. Golden admits that the TVA, like nuclear power industry at large, was knocked off-center by the Fukushima disaster.
“We never considered the concept of stacked events, about what would happen if we had a combination of a flood and a tornado, or a flood and an earthquake. The NRC never had that as part of their design basis. So this is a whole new lens that the regulators and the industry has to look through,” he said.
“Within a day of the Fukushima disaster, we had centralized response team from all three TVA sites. We wanted to know what happened, how did it happen, and what is the significance of what happened. We are analyzing our plants. Fukushima showed us there are opportunities for improvement. As an industry we will become, in a perverse way, a better industry because of this event.” Mr. Golden continued.
“There is this legacy in the Tennessee Valley, in the area of the Oak Ridge National Laboratory, where nuclear power was born. Nuclear energy is part of this area’s culture. The TVA tries to characterize itself as being the only utility that is bringing on new nuclear reactors,” he explained.
“There’s nothing new about these reactors. This agency has a troubled past and is trying to clean up its balance sheet with old reactors that were never finished. They want to bring these units online before they are so old they are obsolete and become lost assets.”
“From a safety perspective, that doesn’t do anything to build confidence. From an innovation and leadership perspective, we think the TVA should be focused on the clean energy side,” he said.
The Watts Bar plant sits along the Tennessee River near its namesake dam in a rural stretch of rolling hills between Knoxville and Chattanooga. The serene river landscape in the plant’s immediate vicinity is host to dozens of fishermen every day, in boats and along the banks, who happily fill their coolers with catfish. “Some of the biggest I’ve seen, some of them fifty pounds,” noted one angler who has been fishing in sight of the majestic cooling towers for more than ten years. He had no concerns over the nuclear reactors’ safety.
Along the winding roads to the small towns nearby, many residents seem equally unconcerned about any potential nuclear mishap.
“Folks are hurting for money around here, they really pinch their pennies,” says Joe Zych, who owns the Peddler’s Village and Flea Market a few miles from the site’s well-guarded entrance. “There’s not that much work in the area except for the power plant. We would be a lot worse off if it weren’t here. I think it’s safe, and so do most of the people I know,” he said.
The power plant’s regular work force fluctuates between 900 to 1,400 employees. Construction crews for the second reactor account for another 3,400 jobs. Watts Bar’s current payroll exceeds well over $100 million. While the TVA pays no taxes because it is a government-owned utility, nearly $128 million for fees in lieu of taxes are paid to state and local governments. Road impact fees and purchase of local goods and services bump the total economic impact to well over $230 million, Mr. Golden explained.
When the second reactor goes online, the plant will generate a combined total of more than 2,300 megawatts of power per day.
Mr. Golden and other TVA officials maintain they are not only good neighbors, but safe ones as well.
“If you look at the TVA fleet over the past 37 years, and you look at performance indicators — the number of reactor trips, workers’ exposure to radiation, and radioactive waste material that is generated, you would see steadily improving numbers. We’re not perfect. There’s human frailty and mechanical issues, but collectively we are better than we were in 1974.”
“We’ve been the pioneer. To some extent we try to be a leader, too. We try to benchmark best practices in other areas — California, for example — and bring them back to our facilities to continue to improve,” he said.
The TVA conducted economic studies and determined there was two billion dollars in savings to their customers by finishing a partially constructed unit rather than building something new, Mr. Golden continued.
“The rigor, pedigree and quality assurance that goes into nuclear plants is massive, regardless if they were older units sitting idle or not. We don’t assume anything. Everything needs to demonstrate its safety capability. It is all refurbished, reverified and recertified in order to demonstrate that it is safe,” he said.
Mansour Guity would like to believe it was so.
These determined students
taught the professors
about life’s challenges.
And not being defined by them.
©2011 Robin Nelson All Rights Reserved
It was a commencement like hundreds across the nation on a warm May Tuesday morning. A few thousand capped and gowned college students, fresh-faced and eager to move on the next chapter in their lives, walked into the arena to the familiar “Pomp and Circumstance” by the brass ensemble.
A blend of perfumes, after-shave lotions and bouquets from hundreds of flowers filled the muggy, southern air.
The day would be consumed with relatives, hugs, kisses, snapshots, goodbyes and countless open houses. Coming weeks would bring job searches, resumes and– hopefully – interviews. The scene could have been from anywhere in middle America.
But there was something very different on this day, in this graduation ceremony.
Two students who had graced the campus for the last two years as part of Kennesaw State University’s pilot Academy for Inclusive Learning were asked to stand for special recognition. They held leather-clad certificates in their hands that looked much like the other students’ diplomas. They stood proudly as the university president shared a bit about who they were and what they had accomplished. Applause, full and authentic, filled the hall. Kelsey Bizzell and Christopher Hunnicutt weren’t the valedictorian and salutatorian. They were special in a much larger sense. And they were pioneers.
Tears welled up in Christopher Hunnicutt’s eyes as the gowned president spoke. His classmate Kelsey stood in awe as the two were affirmed and encouraged. It was a dream that had finally come true. And the spotlight was on them for helping to break new ground in higher education.
The arena was filled with proud parents, but there were two sets of parents who beamed even brighter than the rest.
Christopher and Kelsey have developmental disabilities. In other communities, opportunities for a college experience would have likely remained an unfulfilled dream for students with Downs syndrome or similar challenges. But at KSU’s College of Health and Human Services, a handful of students who otherwise would not have been admitted to college had the opportunity to attend lecture classes, hang out with fellow students, study in the library and do pretty much what college students do for four semesters, modified, of course, to their abilities.
“We started with three students for the first year,” explains Jill Sloan, who administers the two-year program. “The second year we added six more. Hopefully we can add more every year as we get funds and staff.” A former special education teacher in the public schools, Jill’s heart glows with pride at how her students adapted to campus life. She is determined and optimistic that the program she has shaped will be replicated in several other Georgia universities. And maybe beyond.
“Mom, I’m really a college graduate now,” Kelsey gushed later to her mother Kimberly as she held out a yellow “KSU Alumni” T-shirt from a table where the bookstore had set up shop. “Yes, you are,” Kimberly said. “Yes, you are.”
“These students would have had little opportunity for anything like this five years ago. Once their secondary education time was up, usually by age 22, that would have been the end of it,” explained Ms. Sloan. The project now has the university’s full support.
Christopher and Kelsey dearly wanted to be just typical students. (See the earlier post from 2010) Closely supervised and mentored by both staff and student volunteers, their classes and activities gave them significantly more maturity and confidence to deal with a world that typically doesn’t understand what it means to have a developmental disability. It is a world that is sometimes rude and unkind.
While not a true college diploma, the program gives these students a larger perspective than those of their peers who only had the sheltered special education offered in high school. College changes people, even if the certificate isn’t exactly a college diploma.
“Whatever Chris and Kelsey learned in their two years on campus, I think the professors and the thousands of regular students who got to know them learned even more. Those two taught everyone they met not to be afraid of someone with a disability just because they might be a little different,” said one of Christopher’s classmates. “I think Chris and Kelsey broke down a lot of barriers. They might have come to have the college experience, but they ended up teaching the rest of us. They should be very proud of what they’ve accomplished.”
© 2011 All Rights Reserved
Driving home through rural Tennessee after a five-day story on nuclear power, I opted for the back roads once again. It always brings me back to the reason I do what I do.
I remembered seeing hand-painted signs near a worn, junk-strewn barn a few days earlier. I found the place again and I just had to stop. The dogs beyond the fence barked a lot but didn’t really look hungry. Nevertheless I yelled out, “Is anyone home?” rather than climb over the gate to go knocking on the front door of the house.
I noticed a old pickup truck in the gravel driveway. It had a metal, hand-painted sign mounted to the top. I knew I had to meet the man who put it there.
I yelled once more. A few minutes passed and the door opened. An elderly woman came out with a big smile on her face. She seemed genuinely pleased that some stranger came to visit.
I asked about the dogs. She ‘shooed’ them away and opened the gate. Then David walked outside. A tall fellow in his later years, he seemed eager to talk. He proudly showed me his metal signs and explained that he was a street evangelist. I asked to make his picture and he happily complied. “But only if you get me with my signs,” he said.
His name is David Decker. Perhaps you’ve seen him on various street corners in cities throughout the South. He makes a little money from selling scrap metal, but it all goes to support his passion for sharing the Gospel to anyone who might be walking by.
Perhaps you ignored him, writing him off as just another ‘religious nut’ with a sign on a street corner. It doesn’t phase him. A lot of people look past him. “If one person stops to listen out of thousands who might pass by, and that person learns something about who Jesus is, it’s worth it,” he said.
I made a few pictures of David with his signs. Then Susan joined him. “She’s my girlfriend,” David explained. “My wife died a few years ago. Susan and I will probably get married one of these days,” he said.
We talked for a bit before I headed back to the car. “Have a blessed day,” he said. “See you in Heaven.”
David likely won’t make the cover of Christianity Today. His pictures likely won’t go beyond this blog. But none of that matters, either to David or myself. I had an opportunity to meet an interesting person who is a colorful thread in the fabric of the South. I made a picture that makes me smile.
May it brighten your day as well.
A single mother struggles to keep her profoundly challenged son out of nursing homes
© 2011 Robin Nelson All Rights Reserved
“He’s in there, I know it,” Essie Evans said, gently stroking her son’s cheek. Tears welled up in her eyes for a moment before she took a breath and pulled herself together. Feeling sorry for herself or her profoundly disabled 16-year-old son, Cornelius, would accomplish nothing.
She leaned over and kissed his forehead. ”He knows my voice. He knows I’m here and he knows he’s loved,” she said. “I made a promise to take care of my ‘Fudge’ as long as I’m breathing. I couldn’t bring myself to put him in a nursing home. They wouldn’t know him. He wouldn’t get the care he needs. He needs to be with people who love him. No, I couldn’t do that.”
Cornelius lay in a recliner chair wedged between the living and dining rooms of Essie’s cramped mobile home. Unable to speak or move, his eyes seemed to stare at something far in the distance. One day is much like another here, except for the weather. A tired air conditioner clunked and hummed from a kitchen window. Birds chirped from trees outside. A dusty pickup truck rumbled down the red dirt road that separates Essie’s home from a vacant farm field. Essie’s handful of neighbors along the dirt road keep pretty much to their own business.
Essie busied herself changing the sheets on the hospital bed that nearly filled her son’s tiny bedroom at the end of the hall. It was just Essie and Cornelius for a few hours more until her older son Morris would come by after his day job. Morris would help Essie move Cornelius to his room for the night. He would also stay to keep watch on his brother so that Essie could sleep for a few hours.
“I knew something wasn’t right three weeks after he was born,” Essie reflected. “Fudge was my third child. He didn’t really cry like my first babies, it was more of a high-pitched whine. He just lay there and didn’t move. My friends said I was lucky to have such a good baby, but I knew something was wrong.”
Like many small towns in south Georgia, Donalsonville has several family practice physicians who provide routine medical care, but trauma and serious illness care is sparse. Specialists are few and far between, often hours away.
“By the time he was three months old, he’d shake and quiver. His lips would turn black. He couldn’t tolerate milk and he started passing blood. I took him to a big hospital in Florida but the doctors couldn’t find anything wrong, They said I was being overprotective and overconcerned. They told me, ‘There’s nothing wrong with this child.’ But I knew different,” she said.
On their way back from Florida, Essie watched as Cornelius had several grand mal seizures. When they finally returned home, her local doctor suggested she take Cornelius to see specialists in Atlanta.
After a week of tests in an Atlanta children’s hospital, doctors diagnosed him with mitochondrial myopathy, a genetic disorder that affects the whole body. ”They sent us home and said, ‘just leave him be,’ as there wasn’t much they could do,” she explained. ”They said he would eventually go blind and deaf and develop heart problems. They said his organs would eventually shut down.”
In time, Cornelius learned to crawl and roll over. By age three, he was sitting up and trying to walk. Though he couldn’t speak words, he made sounds as he tried to express himself.
“He would get all excited when he was in his feeder seat. He would clap his hands and say, “ah-yah-yah-yah” and bang his spoon on the tray when he heard the blender going. He knew that meant it was time to eat, and he could used that spoon to eat,” she said.
“Cornelius played with balls and a teddy bear. He flapped his arms and laughed. He was content and happy. He was alive,” Essie said. She enrolled him in a pre-K nursery school, hopeful that maybe the doctors were mistaken.
As Cornelius turned five, however, doctors were certain that he suffered from a form of mitochondrial encephalomyopathy. “They said it was like he had dozens of little strokes all the time. He was never going to get better. He would never talk or be able to care for himself.”
By the time Cornelius was twelve, his father had filed for divorce and moved away. Essie and her two older children were left to care for Cornelius. “He couldn’t deal with Fudge’s disability. It embarrassed him. He doesn’t have anything to do with his son. He really hasn’t been in Cornelius’ life for a long time,” she said.
Two years ago, in an surgical attempt to repair Cornelius’ spine problems, Cornelius was given a bone graft and a metal rod in his back that unexpectedly caused a massive infection beneath the stitches. “He had a temperature of 105. We almost lost him,”she said. Whether it was damage from the resulting high fever or the progressive nature of the disease, Cornelius’ condition soon deteriorated.
The claps and “yah-yahs” disappeared. He can no longer hold his head up. He laughter has been replaced by heavy breathing and grunts, except for an occasional grin when Essie hugs or tickles him.
Cornelius is now on an electric pump that regularly forces liquid nutrients through a tube directly into his stomach. He requires round-the-clock care to turn him every few hours, administer his medications, change his diapers and bathe his limp, 101-pound body. When he needs to see his doctor, Essie and Cornelius make the four-hour trip with the help of a state-supplied van and driver. After the visit, they load Cornelius back into the van for the long drive back to southwest Georgia.
“I had him in a nursing home for a little while. Then I saw the bruises and scratches on his body that could only have come from someone being rough while moving him. I decided then and there that he needed to be home with me. He needed to be with people who love him.”
Now on disability herself, Essie somehow manages to keep the bills paid. She has asked state Medicaid officials for help in caring for her son at home, but it is a continuing, uphill battle.
“There’s Medicaid funds available to pay for someone to come in and help me, except there’s nobody who’s willing to do it where we are. I can’t find anyone to help care for him. The local providers say they don’t have the staff. They paid Morris for a while, then they said they couldn’t continue to pay family members to care for Cornelius. But if he were in a 24/7 facility it would cost a lot more than what I’m asking.
“So I do it. Every morning I feed him breakfast through his tube, change his diaper, drain his urine bag, give him a sponge bath, brush his teeth and suction his mouth. A few times a week I manage to lift him into his seat in the tub and give him a real bath, but that’s hard to do. Then I’ll get him in clean clothes and clean his room.
“It’s a struggle to get him in and out of his wheelchair — sometimes I have help and sometimes I don’t. I take him outside if it’s nice weather. We’ll sit under the tree and I’ll read to him. I talk to him throughout the day. I rub his hands and try to stimulate his senses. Sometimes I’ll sing to him.
“When my daughter or older son comes over they’ll watch him so I can take a nap. But not for too long. Cornelius is my responsibility. It’s not their responsibility to take care of him. I want them to have a life.
“If he was in a nursing home I know he wouldn’t get the care he needs. He would just be another person who can’t speak up for himself, stuck in a warehouse and left alone to lie in his feces for hours. No stimulation, no words of love or kindness. I’ve seen it. I know.
“Fudge could live to be fifty, I don’t know what to expect. I just take it one day at a time. Sometimes it’s overwhelming. There are times I’ve asked God to take him so he’s not in pain.
“It gets lonely here. My sister helps when she can and my other kids help here too. We took Cornelius to church with us until he was maybe 11. Our church was mostly older folks, maybe there’s a hundred members.
“Sometimes people would call and offer to help so I could go have some time for myself. But when I’d call to take them up on their offer it was usually, ‘I’ve got something to do, or today’s not a good day, or I got this or I got that.’ I lost faith in people. There have been times when Cornelius was so sick and I really needed someone to talk to, but there wasn’t anybody. It wasn’t that they didn’t care, they just had their lives going on. I can’t take it to heart. I can’t hate.
“But you know, God knows my Cornelius. I know God loves him even more than I do. I put God first and He gives me strength to take care of my son. He could be sleeping and when I come into his room he’ll look up at me. I’ll take his hand and hold it tight. I know he’s in there and he lets me know he hears me. My Fudge brings me joy. It’s a feeling ain’t nobody can pay me enough to give up.”