Peggy was only 15 years-old in 1974 when her first baby, Toney Allen Duvall, was born. Her newborn son appeared beautiful and healthy and no one suspected that anything was wrong until they noticed that little Allen didn’t cry when they stuck him with the needles for his blood test. He didn’t seem to notice the pain at all. Still, no one seemed to know just what was wrong. “They didn’t really talk to me about it,” recalls Peggy. She just knows that her son was sent to Grady Hospital in Atlanta for tests and she was not able to take him home until a week later.
At first the baby seemed to do fine, although Peggy noticed that she had to tip his chin up a little so that he would suck on the bottle. But soon, he was eating less and less and after about two weeks Peggy was afraid that he was not getting nearly enough to eat. She took him to the pediatrician again and again and each time the doctor would tell her that her baby was okay, until one day, the doctor looked at Allen and told Peggy that she needed to take him to the hospital “right now.” Then, says Peggy, “once he got to the hospital, they had all those tubes in him and he just went downhill from there on.”
The baby was in the hospital for a month and still no one seemed to know just what was wrong or how to help him. “It was really rough. Allen still couldn’t eat and he would get dehydrated. The doctors told us different things and everywhere we turned nobody seemed to want to help.” Finally, a doctor told Peggy that Al had a birth defect as a result of the Rubella virus that she had contracted when she was pregnant. He told her that she would not be able to care for her baby and that she would need to find a facility that would care for him.
Allen’s parents did not know what to do. Peggy didn’t really understand what was going on; she just knew that Allen needed care. We didn’t have any money, says Peggy, “and no insurance or social security for him or anything, but, they told us that they knew a place that would take Allen anyway. So they sent him there and after he went to that place, they got him a social security check to pay for everything.”Peggy did not know it then, but once they sent Allen to that facility she would never be able to control Allen’s care again. She would always be on the outside looking in. The staff at the new facility tried their best to physically and emotionally separate Peggy from her young son. Every time that Peggy would go to see her baby, the staff would tell her that he would not live much longer because babies with Allen’s disability did not live very long. “They told me he wouldn’t live to be two years old, but he did. And then they told me he wouldn’t live to be three years old. They kept telling me he would die until I finally said, ‘don’t tell me that no more!’”
When he was two years old, Allen was moved to the Georgia Retardation Center in Chamblee (the name of the facility was later changed to Brook Run). “In a way,” remembers Peggy, “I was grateful that they were there – but I think he could have been better taken care of.” In fact, Al experienced a number of very serious injuries while he was a child in Brook Run.
“They said he used to sit in his crib and hit his head on the wall,” Peggy says, ‘because nobody was paying any attention to him – and it didn’t hurt (because Al did not feel pain like other children), so he didn’t stop.” Allen’s face was so damaged by repeated impact with the wall that he would need reconstructive surgery to rebuild his nose.
While Allen was still a small boy, he broke his arm, but again, because he did not feel pain like other children, he didn’t react the way other children would. The staff at Brook Run did not realize that his arm was broken for several weeks. By that time a lot of damage had occurred. Allen’s arm had to be re-broken and reset and he lost some of his fingers to gangrene. When Allen was five or six his mother noticed that one of his hands was swollen and blistered when she knew he had been fine only days before. “They told me that he had put his hand in boiling water, and I said, how? He doesn’t even know how to turn on the water!” There was an investigation, but no abuse or neglect on the part of the staff was ever proven. “He used to cry a lot,” Peggy says, “because he just didn’t know what else to do and I know that they used to restrain him by sitting on him.” In spite of all the dire predictions and the terrible injuries he sustained at Brook Run, Allen survived. When he was old enough to begin to understand what was happening to him, he became a very determined youngster – determined to make other people see him as just a regular kid. “When Allen was nine or ten years-old,” says Peggy, “He was using a wheelchair for little while and I wanted to get a handicapped sticker for the car so it would be easier for him. But Allen wouldn’t hear of it. He said, “No, Mom. We don’t need to park that close, I can walk.”
There are only two things that Allen remembers looking forward to when he lived at Brook Run and those were the two things that would get him away from the institution – going to school and visiting his mother and family every month. Allen went to a number of schools while he lived at Brook Run and when Al was ready for high School, the staff at Brook Run transported him to public school in Gwinnett County every day. Still, he knew that they were underestimating what he could do and he was determined to show them. “I went to a regular school outside of the institution,” says Allen, “and I graduated with my regular class,” (he smiles) “I guess that’s was when the State decided to let me go.”
One day, in 1998, (nineteen years after Allen was placed at Brook Run) he called his mother to tell her that they were closing Brook Run. “We wanted him to come home with us,” said Peggy, “and we asked for that. But they told us that we couldn’t afford to give him the care that he needs. I asked, ‘If you will pay people to take care of him there, why won’t you pay me so I can afford to stay home and take care of him?’ They told me that it was the system. Allen couldn’t come and live at home because that’s not the way the system works. They’ll pay those people but they won’t pay me.”
After Brook Run closed, Allen went to live in a group home. Today, Al (as he is known by his friends) is 35 years old and lives and works in his own community. “I live in a normal setting now,” he says, “I have a regular job.” Al would like everyone to see him as just a regular guy, but his nineteen years at Brook Run left him with a lot of scars and bad memories. Still, he’s a positive person and he tries to think about the good things including his Mom and the rest of his family. Al understands better than anyone how important it is to have a family that cares about you.
“I was lucky enough to know my mother when I was in Brook Run,” says Al, “I wasn’t just left there. I stayed in contact with my family. I was lucky. Not everyone at Brook Run was able to stay connected to their families. I think only about 20% of us were able to do that. A lot of the children that I grew up with went through some terrible times. They were lonely and withdrawn from everyone. They were isolated. Some of them talked to themselves a lot. I think that if more of the children [at Brook Run] had had contact with their families they would have learned to interact with other people more and they wouldn’t have been so unhappy. Lots of them never smiled.” Al didn’t always have this perspective on what happened to him. “When I was little,” he said, “I didn’t understand why I had to stay in Brook Run. I wondered why me? Where was my normal life?” Peggy says, “Allen thought that I gave him up. And he would ask me why I would do that.”
Later, Peggy tried to explain it all to him. “When I was older,” said Al, “my mother told me that, as a baby, I had trouble eating and sucking from a bottle. I wasn’t getting enough to eat. Doctor’s told my mother that I might die. I did almost die – twice. Mother went to different doctors and hospitals, they didn’t understand what was wrong with me and they didn’t help me. They told my mother that I would probably die. They told my mother that the Georgia GRC (Brook Run) was the only place that could help me, so she had to take me there.” While Al was able to stay connected to his mother, it was harder for the rest of the family. “My mother came to visit me in Brook Run, says Al, “but my Dad never did. I think he was too scared. He didn’t know what to expect. Maybe Brook Run reminded him of Vietnam because so many bad things happened there and so many people died. Brook Run was like that too. Brook Run was kind of like a prison to me. People got sick and they waited too long to help them and they died. People have flashbacks from being in institutions.”
Al knows about flashbacks. “I get scared sometimes, I have nightmares that I do something wrong and they send me back– but then I remember that Brook Run is closed and they can’t send me back there.” But Al understands that there are other facilities – hospitals and nursing homes – that still incarcerate children and adults and he will not allow Brook Run or any other institution to haunt him without fighting back.That is why Al is an advocate in the disability rights movement. He speaks at conferences and has worked as a consultant for the Institute on Human Development and Disability at the University of Georgia, speaking to undergraduate and graduate students about his first hand knowledge of institutionalization. Al believes that all institutions should be closed. “I advocate for others so that they can get out and so some people don’t have to go through the same thing I did.”
Al wants everyone to understand the affect that institutionalization has on children and adults. He hopes that talking about his experiences will help him to deal with his own bad memories while it helps to get other children and adults out of institutions. “After I got out of Brook Run, I had to go through a lot of counseling to help me with those bad memories. It helped me a lot but it was painful. Telling my story helps me a lot.” When I first got out, I didn’t have anybody I could talk to about it and I was still scared. I thought that if I talked about it, people would think that I was lying about what happened to me and other children in Brook Run. But now, I can tell my story and its helps me and it helps other people, because I can tell people how important it is that children have their parents close to them to help them as they progress in life. I love being an advocate.”
Al knows now that his mother never wanted to be separated from him but they both still grieve about the time that they were forced to live apart. A childhood is something that cannot be replaced.
Peggy’s advice to parents who are faced with the possibility of institutionalization for their child is: “Find another way – find a way to keep your child at home.”