by Alison Bass
As TEICHER AND SCHATZBERG continued their jaunt around Toronto that late spring morning in 1998, conflicts in medicine were the last thing on their minds. They were far more interested in catching up with each other. Back at the convention center, the two men promised to keep in touch and parted ways. Schatzberg dashed off to a previously scheduled luncheon, and Teicher made his way inside the 104,000-square-foot convention center to prepare for a poster session. The poster was titled "A Strong Association between Suicidal Ideation and Ratings of Limbic System Irritability in Children with a History of Early Abuse." Despite the grim topic, Teicher was in a good mood. The walk had put some color in his cheeks, and for the first time in years, Marty Teicher was feeling upbeat about the direction of his career.
hen Tonya Brooks was eleven, she and her parents moved into a campground in Lockhart, Texas. Her mother and father were trying to save money to build a new home. All three of them lived in a camper-trailer with just enough space for a tiny kitchen, a couch, and two twin beds. There was no such thing as privacy. Halfway through her sixth-grade year at Burnett Junior High, Tonya was sent to live with her grandmother in Granbury, 240 miles away. But she hated being away from her mother and father. So a month or two later, she moved back to the trailer to live with her parents. In such a cramped space, tempers flared. Tonya remembers her parents quarreling a lot. She finished out the school term in Lockhart Intermediate-her third school in one year.
That fall, her parents separated, and Tonya and her mother went to live with her mother's sister, Aunt Meme, in Clyde, Texas. There, Tonya attended Clyde Junior High. On her first day at school, she sat down at a mostly empty table in the cafeteria to eat her lunch. One of the girls at the other end of the table said, "You can't sit here"
This kind of thing happened over and over again. Tonya stopped eating in the cafeteria. She stopped trying to make new friends at school. It almost got to the point where she would run and hide if another kid so much as looked at her.
That winter, Tonya and her mother moved to Georgetown, Texas, to live with other relatives. There, Tonya attended Benold Middle School and hated it-the kids were so cruel. In the spring of that year, she and her mother moved again, this time to Baird, Texas, to live with her mother's brother. In May 2000, her parents finally got back together, and they moved with Tonya into a new home in Pflugerville. Tonya's father walked her to school on her first day of eighth grade at Pflugerville Middle School. But she didn't want to be there; after he left, she sat and cried for ten minutes straight. She was thirteen years old, and all she wanted to do was disappear.
HAD ROSE FIRESTEIN known Tonya Brooks at the time, she would have empathized. Before joining the New York AG's office, Firestein had spent a lot of time on the road herself. For five years she had crisscrossed the country as senior litigation counsel for Children's Rights, a nonprofit organization that defended the rights of vulnerable children nationwide. In 2001, Florida was Firestein's latest battleground, and she seemed to be on a plane heading south every few weeks. On each trip, she bought a present for Ellie: a pink beaded shoulder bag, bubble bath, little cutters for the cookies Ellie loved to help bake. The five-year-old accepted the gifts as her due, as the least Rosie could do after going away so many times. Ellie did not understand why her aunt had to keep taking that big bird in the sky to a faraway place called the Sunshine State. How come she never came back with any sun on her face?
"I don't want you to go! Why?" Ellie would wail when Rosie announced she had to leave yet again. Firestein would gather the little girl onto her lap and explain that she had to go and help some other children who didn't have a mommy or a Rosie to hold them tight.
"You know I always come back to you," Firestein told her. "You are my sweet potatoes! How about I make another cake when I get back?"
Firestein baked a gourmet cake for Ellie's birthday every year. For her niece's third birthday, Rose created what her sister Janice dubbed the Eiffel Tower cake a delicious concoction of butter and cream and flour that was eighteen inches tall and almost a foot wide. Eiffel Tower cookies decorated the top of the cake, and buttercream flowers and trees adorned the sides. And every year for the Chinese New Year, Firestein whipped up an orange and black cake in the form of a fire-breathing dragon in honor of Ellie's Chinese ancestry.
Firestein didn't tell Ellie this, but she was just as sick of the constant travel as her niece was. Yet she had no choice. This was a crucial phase in the class action suit that Children's Rights was helping several local attorneys bring against the Florida Department of Children and Families. The Bonnie L. complaint, filed in federal court, was just the latest in a string of lawsuits targeting Florida's decades-old habit of foisting foster care onto private agencies that warehoused children in large, poorly supervised residential facilities.
Firestein spent much of her time in Florida taking affidavits and depositions in an attempt to show that many of the state's foster children were being overmedicated with drugs like Prozac, Paxil, and Risperdal, an antipsychotic. At times she felt as if she were reliving her Legal Aid days. The abuses were the same; only the names of the drugs had changed.
In one affidavit, a teenage girl named Karina testified that the drugs she had been given in foster care made her tremble and drool.
"When I was on the medication, I couldn't function," Karina later told Carol Marbin Miller, a reporter for the Miami Herald who wrote a series on the problem. "I was a zombie ... I was always sleeping. I didn't know what was going on. Everything was a blur."
Another teenager named Leslie F. described how as a young child in foster care she had been forced to take Prozac. Leslie had been in foster care from the age of five, ever since her mother died. She had cycled in and out of shelters, locked residential treatment facilities, and countless foster homes. In an affidavit, Leslie said, "When I was younger, DCF [Department of Children and Families] made me take Prozac, which made me very drowsy. I had a very difficult time staying awake in school, and I couldn't concentrate on my schoolwork." Leslie dropped out of school and gave birth to a child out of wedlock when she was eighteen. The Miami Herald series revealed that as many as 45 to 46 percent of foster children, some as young as five, were on psychotropic drugs.
For Bonnie L., as the class action suit was known, Firestein had to travel all over Florida-to Tampa, Miami, Fort Lauderdale, Palm Beach, Tallahassee. At times, Firestein felt as if she had stepped back into a time warp, to the months she had spent traversing rural Georgia, talking to African American families whose children had been labeled mentally retarded and dumped into warehouselike classes where no real teaching was going on. This time, of course, she wasn't camping by the side of the road ("I'm too old for that," she told her boss at Children's Rights), but it seemed as if she were spending nights in the same forgettable motel room in every town she passed through.
As if the constant travel weren't bad enough, Firestein was having continuing problems with her eyes. She had undergone several laser procedures in her eye surgeon's office to no avail, but Firestein felt that she couldn't just stop working: the Bonnie L. case was heating up. So a few weeks after the emergency surgery to reattach her retinas, Firestein flew back to Florida for a previously scheduled round of depositions. On this trip, she flew directly into Tampa. Her cocounsel, a Florida trial lawyer named Karen Gievers, met her at the Holiday Inn Express where they were staying. Gievers, who had raised two children while practicing law, made a decent living litigating commercial and personal injury suits in Tallahassee. But in the past several years, Gievers had taken on the thankless and considerably less remunerative task of advocating for Florida's foster children. Gievers first sued the Department of Chil dren and Families in 1995 and won a settlement in which state officials promised to improve the care of children in their custody. But by 2000 it was clear that the new state administration under Governor Jeb Bush was not going to live up to those promises. So Gievers decided it was time for another class action suit. This time, she brought in Chil
dren's Rights to help with the heavy lifting.
Gievers could tell that Firestein was having problems with her eyesight. It seemed as if her cocounsel's vision had gotten progressively worse since they'd begun working together. But Firestein had been quick to adapt, figuring out a few ingenious work-arounds: She enlarged the font size of the computer so that she could read the documents she needed for her work. And during the depositions, which were taped and then transcribed electronically, she memorized the key questions so that she didn't need to look at her notes. Firestein always seemed to know exactly what she wanted to ask and in what order. Her mastery of the subject matter for each deposition never failed to amaze Gievers.
Over dinner that night in Tampa, Firestein told Gievers and her husband, a paralegal in the same law firm, about her detached retinas and how she was hoping that surgery might eventually restore some of her sight. The most recent procedure hadn't done the trick, she said.
"She didn't complain or ask that somebody else do the work," Gievers recalled. "She just kept trucking."
Gievers and her husband offered to help in any way they could. And later that evening, they did get a call from Firestein, who was staying in a nearby room at the Holiday Inn. Could Gievers and her husband help her find a document that had gone missing?
The couple walked over to her room. To their astonishment, Firestein showed them to the bathroom, where legal documents lay strewn all over the countertop, bathtub, and floor. The litigator chuckled at their surprise and explained that the bathroom had the best light in the entire room. With her limited eyesight, the lamps around the bed and desk just didn't cut it.
Gievers found the document Firestein was looking for, and they chatted briefly. It was getting late, and Gievers almost offered to stay and help her cocounsel prepare for the next day's deposition. But she sensed that Firestein didn't want or need any further assistance. So Gievers said good night and left. She remembered thinking it was going to be a late night for the New York litigator. But when she and her husband came down for breakfast the next morning, Firestein was already there, dressed and ready to go.
FIRESTEIN WOULD LATER confess that she didn't know how she kept going during this period. She was desperately afraid she would not be able to work again. She and her sister Janice talked late into the night about what they were going to do. Even if by some miracle her vision was partially restored, she had a feeling that her days at Children's Rights were numbered. The nonprofit ran on a shoestring budget, and it needed litigators who could hop on a plane at a moment's notice and travel anywhere in the fifty states. With her failing eyesight, she knew she couldn't sustain that pace. Yet who else would hire a female attorney who was legally blind and approaching fifty? Already she had learned that blindness carried with it a stigma and the lingering suspicion among people with sight that people without it couldn't possibly be as smart or as capable as they were.
WHAT SCARED FIRESTEIN most of all was the thought of becoming dependent on others. When she and her siblings were growing up in Indiana, their proud and distinguished father would sometimes fall ill from complications of diabetes, occasionally for months at a time. Nursed by his wife with endless devotion, he would eventually recover and resume his medical duties. But finally he had a stroke and just seemed to give up. Not long afterward, he died of a heart attack.
Rose wasn't about to give up. She had seen the toll her father's health problems took on the family: during the periods when her father lay ill, her mother was too preoccupied to pay much attention to her children. So his third daughter-the one with the self-professed "biggest mouth in the group"-was determined not to let her health problems interfere with the lives of her sister and the little girl they were raising together.
She was especially upbeat around Ellie. As much as possible, Firestein tried to make her eye problems into a source of amusement for the little girl. At home in Brooklyn, they ate off china with a decorative flower pattern, and there were times when Firestein would mistake the flowers for food.
"The sight of me chasing those flowers around the plate made Ellie laugh her head off," Firestein recalled. "She was five then and she thought that was really funny."
In 2001, Rosie could no longer see well enough to create her extravagant cake productions or take Ellie on day-long treks to Coney Island. But when the two of them were walking somewhere and had to cross the street, Ellie would take Rosie's hand and gently, unobtrusively, guide her across. Firestein was touched by her niece's tenderness, but it was all she could do not to pull her arm away. She had always had a hard time accepting help from others. She prided herself on her independence. And now here she was being squired around in public by a five-year-old. For the first time in her life, Rose Firestein felt helpless and dependent on the goodwill of others. And she hated that feeling.
he storefront office of the Rhode Island chapter of the National Alliance for the Mentally Ill (NAMI) was built into the side of a hill in a run-down neighborhood of North Providence. Even in broad daylight you felt as if you were working underground in a dank hovel. And because the office was one big room split into small, cluttered cubicles, there wasn't much privacy. But Donna Howard didn't mind. As assistant director of NAMI Rhode Island, she had found her calling. She loved working directly on behalf of people with mental illness, and she was not about to let the gloomy environment or lack of privacy bother her. True, the other employees of NAMI Rhode Island could hear every word of her phone conversations, but she could hear theirs too.
So when Jim McNulty, president of the board of directors for the parent NAMI, called one morning in October 2002 to speak to Nicki Sahlin, executive director of the Rhode Island chapter, everyone in the office knew it. McNulty was calling about a lecture NAMI Rhode Island was planning for families who had children with bipolar disorder. Howard herself had organized the event as part of a community education series for that fall. This particular lecture was scheduled to be held on November 13, 2002, at Butler Hospital on the outskirts of Providence, where Brown University's psychiatry department was located. Howard was not thrilled at the thought of visiting her old stomping grounds, but Butler was a convenient location for NAMI members, and as Sahlin was always reminding her, the hospital was a generous supporter of NAMI Rhode Island.
Even so, the November 13 lecture had been a bone of contention between Howard and Sahlin for weeks now. Researchers from Brown's psychiatry department had asked permission to pass out flyers at the lecture advertising for a new study to follow adolescents with bipolar disorder. The National Institute of Mental Health was funding the study under the direction of Brown's chief of psychiatry, Martin Keller. But as the Butler clinician who had first called Howard explained, the researchers were having trouble recruiting teenagers for the study. A public lecture on child-onset bipolar disorder, they figured, would be the perfect place to find participants.
"We thought there might be some families at your lecture who would be interested," he said. "That okay with you?"
Howard froze. It was most definitely not okay. She had heard about COBY (an acronym for the study's official title, "Course and Outcome for Bipolar Disorder in Youth"), and she wanted no part of it. Having worked in Keller's research department at Brown, she had seen what could happen to troubled adolescents enrolled in research studies there. In two of the trials under way during Howard's tenure at Brown in the mid-1990s, many of the participants had been teenagers who had no idea what they were getting into. Some had been recruited from foster homes; a few, right off the street. And among patients who did have parents in the picture, there seemed to be little understanding of the risks involved. As it turned out, Howard was not the only Brown employee who had complained to authorities about the way these adolescent studies were being conducted. Around the time that Howard called the Globe, another Brown employee contacted the inspector general's office of the federal Department of Health and Human Services (HHS) about problems with one of the studies, a trial of lithium in bipolar adolescents
. Keller and his researchers were having trouble recruiting for the lithium study, whose purpose was to determine the efficacy of lithium in preventing the recurrence of manic depression. That meant taking vulnerable teenagers off lithium, waiting until they became manic again, and then putting them back on the drug. The study design had risks, one of which was a heightened chance of suicide. It was not the kind of research that most parents would rush to sign their children up for.
In a June 1995 progress report to the National Institute of Mental Health, which was funding the study, Keller wrote that he had amended the original study design to include other mood stabilizers in addition to lithium. He acknowledged that there were not enough participants in the lithium-only study to allow valid statistical comparisons.
Yet despite the redesigned study's broader net, the Brown researchers continued to have problems recruiting for it. Sometime in the fall of 1995, when Howard was still working there, a social worker in the Brown psychiatry department found a computer disk lying in the hallway. The social worker, who was working part-time on another of Keller's studies, popped the disk into her computer to find out to whom she should return it. What she saw there alarmed her. On the disk, researchers in the bipolar study were "saying they had X number of youngsters enrolled in the study, but it was clear they didn't have these adolescents in the study at the time," recalled the social worker, who is no longer working at Brown. Since she is still practicing in Rhode Island, she asked me not to use her name.
"These people had either dropped out of the study or they weren't in the study in the first place," the social worker added. "It looked as if [the researchers] were making up data to say they had these adolescents in the study."