Happiness is difficult to define for a person who doesn’t fit neatly into society’s conventional concept of gender. Transitioning to the preferred gender is sometimes the only solution to resolving dissonance between one’s internal identity and how society perceives them. It is especially challenging for older individuals who have lived with the discord for most of their lives — but ultimately decide they must be true to who they are, often at great personal cost.
Stephenie Viewweigh was able to live her last years in the gender she always knew she was. She died Friday, June 13th, 2014.
Story and Photographs © 2014 Robin Rayne Nelson/ZUMA Press
All Rights Reserved
East Point, Georgia –Stephenie Vieweigh would never forget the bitter, metallic taste of the rifle barrel in her mouth. Her finger was on the trigger — and she was pulling it.
“I couldn’t go on living a lie, unable to be who I really was,” she explained.
It was six years ago on a late-summer morning near Turtletown, Tennessee, a small mountain community near the Georgia and North Carolina borders. Stephenie was sitting beside her kitchen table in the house she built a few years earlier.
“My friend Dan from the local Alcoholics Anonymous group had stopped to visit. Nobody locks their doors in that town, there just wasn’t any reason to. Dan just walked in the door as I was taking what I thought would be my last breath. He saw me and in a split second grabbed the gun out of my mouth. I just sat there, sobbing, unable to talk,” Stephenie remembered.
“He kept asking, ‘What’s up? What’s wrong?’”
“Everyone in that town only knew me as Stephen. The real me — the person I was in my head, my heart and my soul — was Stephenie. I told him, ‘I know I look like a guy but I’m a woman. I got stuck in the wrong body. I think like a woman. I have the emotions of a woman. I perceive life in a feminine manner. I’ve known all this since I was about six years old.’”
“I said, ‘If I couldn’t live my life as the woman I knew I was then I didn’t want to go on living. I couldn’t be ‘her’ where I was. I couldn’t not be ‘her.’ The physical, emotional and spiritual pain was more than I could handle.’”
Stephenie’s friend had never heard about transgender, transsexuals or gender identity issues. “I don’t know anything about what you’re saying, but you need to get hold of a therapist. Now,” Dan insisted. He unloaded the rifle and took it with him. He left the bullets on the table. “I’m sure Dan was bewildered by what he had witnessed. He kept his distance from me after that. I never saw him again.”
“For as far back as I can remember, I wrestled with knowing I had the wrong body. It was a bad joke that I couldn’t do anything about. I was never male, I just looked like one for most of my life,” said Stephenie, now 69. As Stephen, she served four years on a destroyer in the Navy and is a Vietnam War veteran. She also earned college degrees in architecture and computer-aided design. “I lived in Indiana, Florida, Tennessee and now Georgia. I worked in construction as a painting contractor, carpenter, framer, plumber, and even as a county computer technician. I presented a male façade as Stephen during the day, but my brain always knew different.”
“For several years when I lived in Florida I’d come home after working all day, get dressed in something pretty and drive thirty minutes to Tampa. I’d visit friends, go to restaurants and just interact with people as Stephenie. Some nights I stayed out until one or two in the morning. I was always terrified of being discovered,” she continued.
That gender struggle was stuffed down deep when, as Stephen, she met a woman and married. That secret-self had to remain a secret.
“My wife owned a ladies’ consignment shop. My job was to maintain the place. I’d go in after hours, look through all the fabulous clothes and shoes and get dressed while I worked on whatever the place needed. If my wife ever suspected, she never said anything.”The couple moved to Tennessee a few years later and built a home, but the marriage didn’t survive. “It had nothing to do with my gender issues, though,” she explained.
Her need to be Stephenie soon emerged stronger than ever. “I returned to living as Stephenie all the time while I was home. I started on hormones but never really saw any change in how I looked. I saw the same ugly mug in the mirror every day. I kept sinking deeper and deeper into depression,” she said. “I remember tying a rope around my neck several times while sitting in the loft, thinking it would be better to be dead.”
There was no place to go outside of her home. The closest town was more than 90 minutes away. “Some nights I’d just get dressed in slacks and a blouse and drive around those mountains at midnight when everyone else was asleep, hoping nobody recognized me.”
A recovered alcoholic with 26 years of sobriety at the time, Stephenie thought she could cope with the gender discord. “But after decades of this torment in my head, I just didn’t want to go on living,” she said.
A few days after her suicide attempt, Stephenie located a therapist in Atlanta to help her understand gender incongruity. They emailed back and forth several times a day for a few weeks. “Finally, I found the courage to drive down and see her in person. We connected right away. I saw her once a week for a few months. I didn’t feel like blowing my brains out anymore.”
After several months of sessions, the therapist persuaded Stephenie to move to Atlanta and begin living full-time in her preferred gender. “I couldn’t go on the way I was. I‘d lost my house in foreclosure and didn’t have any place to live,” she explained.
Two weeks later, her red pickup truck loaded with boxes of clothes and a few personal items, Stephenie left rural Tennessee for a new life in Atlanta.
“As soon as I got out of my driveway, I felt free. There was this huge sense of relief. It was all about coming unattached to what I’d been attached to. It was more than just Tennessee, it was my whole life up to that point. It was exciting and extremely scary. I’d heard all these stories about transgendered people getting stabbed, mugged, beat up or shot.”
“I suppose I’m what some people call a ‘late bloomer,’ but age doesn’t really have anything to do with it. I reached a point where I either had to be Stephenie or be dead, but I’d come through too much in my years of sobriety to be dead because of this,” she continued.
“I made the decision to push through my fears. I allowed myself to open the door and get on with my life. At 63, I was finally going to be the real me in front of everyone. I wasn’t going to lie any more.” she said. “That decision saved my life.”
Stephenie rented a succession of bedrooms in and around Atlanta, hoping to find work to supplement her limited Social Security income. It didn’t worked out as she’d hoped. Last year she was robbed at gunpoint in the house where she was living. “They took my rent money, food money, my purse, makeup, computer, my car, my ID, everything. But I’m still alive,” she said.
“When I came to Atlanta, the public’s awareness of transgender was nothing like it is now. When I got here there were lots of stares and whispers. I got all caught up in being accepted by other people. I relied on how other people viewed me. If other people liked me and accepted me then I could like me. I relied on other people’s comments to know how to feel about myself. It hurt in the beginning because I wanted to go from Stephen to Stephenie at 100 percent. I wanted everything to be wonderful.”
“I also got caught up in the commercialism of being a woman — the right clothes, the right hairdo, the right makeup. That’s all outside stuff. It has nothing to do with who you are as a person,” she said.
She calls transitioning an ‘inside job.’
“It’s not about other people putting their arm around you and telling you you’re okay. My transition succeeded the day I accepted exactly who I am, what I look like and how I present myself. When I realized that, I said, ‘Yippee, I can do this!’ If there are those who point and snicker or show disrespect, I don’t pay them any attention these days,” she said.
“If people like me, that’s fine. If people like how I’m dressed or how I wear my makeup, that’s fine. If they don’t, that’s fine, too. They have that choice, just like I have that choice. My voice is a bit rough and I know I’m never going to be what society calls pretty, but I don’t need other people to validate my own sense of who I am. These days hardly anyone addresses me as ‘sir,’” she added.
“I know my face isn’t beautiful, but so what? To who? Take the makeup off a lot of those models and see what they look like. Women have bought into the lie that they are only what they look like.”
Stephenie limits herself to one meal a day out of habit and financial necessity. Her Social Security check goes for rent, utilities, food, cell phone service and car insurance, with enough left to buy peanuts for her neighborhood squirrels. She manages to make weekly visits to a local AA meeting and drives thirty miles each way to a gender support group every few months.
Tall and thin, Stephenie exudes an unwavering confidence in her internal sense of identity, though she has as no funds for a legal name change. Her driver’s license still reveals her birth name and sex. Her prominent bust is the result of silicone breast forms. “They look, feel and jiggle just like real boobies.They just come off at night,” she joked. “I don’t have money for doctors, hormone therapy or sex reassignment surgery, but I’m too old for all that now anyway,” she said, wistfully.
“Transgender stories are all over the newspapers and television now. Maybe we’re not totally accepted yet but society is much more aware of our struggles these days,” she said.
“An old friend from Florida managed to find me a few months ago on the Internet. We actually dated many years ago. I told her about my transition to Stephenie and what my life had come to. She was very accepting.”
“She invited me to come live with her. We’ll share the food bills and utilities and I’ll have enough money to live on. It will be great to be with my friend, away from all the crime in Atlanta. I can start living instead of just existing.”
“At last I can have my license changed to read ‘Stephenie.’ Maybe I’ll see some other friends from back then, once I get moved,” she said. “I’m sure we’ve all changed a lot — maybe some of us more than others.”
Story and Photographs © Robin Rayne Nelson/ZUMA
Jan sleeps a lot now. Alzheimer’s disease has taken a toll on her body as well as her brain. She woke slightly and tried to respond to Tom — with words that were unintelligible except to Tom. He smiled and gently kissed her cheek, something he does constantly through the day.
Tom and Jan met nearly fifty years ago. They were high school sweethearts and married a few years later surrounded by rural Indiana farmland. He worked for several newspapers on the huge printing presses. She raised their two children. They moved to Georgia in the mid 1980s.
Jan was diagnosed with Alzheimer’s disease two years ago at age 63.
“I’m 67. I had retired, but Jan’s condition was getting worse. She became very combative and restless. She did things that worried me, like putting our small dog in the refrigerator. The dog was fine. She was in and out of the hospital as her doctors tried to find the right combination of meds for her. The only solution was to place her in the nursing home. I went back to work to try to pay for it.”
The monthly costs were more than he could manage. Tom fell behind in his mortgage payments and nearly lost his house.
A few months ago, an infection left her unable to walk. She lost weight and slept most of the day at the nursing facility. Tom’s early-morning printing press job had dwindled to just a few days a week.
“It just made sense to quit the job and bring her home.”
A hospice nurse visits several times a week to help bathe Jan and check on her medications. Tom devotes most of his day to caring for his wife. His daughter and niece provide care when Tom needs a break.
“It’s better that she’s home now. I can take care of her and spend time together,” Tom said.
Tom watches Jan as she sleeps during the day on a living room sofa. He anticipates her needs, makes her meals, prepares her medications, changes her diapers and does all he can to make her comfortable. The television is usually on, tuned to a news channel with the volume turned low. Some days he has soothing Christian music playing.
“The doctor says maybe she has six months. Nobody knows. I just take it one day at a time. She’s the love of my life and every day we have together is precious.”
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 Rayne 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.”