Doctor's Orders

Parents battle medical authorities for control of their children.

Brian Doherty from the February 2001 issue

(Page 3 of 3)

Dissatisfied with her daughter's course of treatment, Phifer tried to take Amkia out of Montefiore in order, she says, to find her a more compatible doctor. Montefiore officials responded by calling in New York City's Administration for Children's Services. ACS officials decided that Phifer's attempt to seek a second opinion constituted a failure to provide appropriate medical care, punishable by loss of custody. Young Amkia was taken away from her mother and spent two years in a series of foster homes.

I spoke to Amkia, now 12, by phone in August. Foster "homes" was a misnomer, the intense and articulate Amkia says. "I don't refer to them as homes: they were foster houses. I don't feel any of the foster people were warm or nice, in terms of their being any sort of rapport between the foster person and me. Many of them had rats and roaches and mice. Basically, all of the foster people were just in it for the money."

Amkia was moved to six different homes in the two years, rarely being told why she was moved. She was allowed to see her mother for only one hour a week in supervised meetings. A social worker sat next to the mother and daughter, ordering them to speak up so she could hear every sentimental word they exchanged. Amkia, formerly homeschooled, was enrolled in public schools where, she says, she was frequently picked on and beaten up. "I learned more when my mother homeschooled me," Amkia says. "I never got a chance to have my mind stimulated [in the schools]." Her homeschooling became an issue in family court hearings about custody; Phifer was accused of "educational neglect" for not sending her daughter to New York City public schools.

After you talk to Amkia, the law's presumption that this bright and aware human being should not be able to decide for herself where she wanted to live seems especially absurd. But she was not allowed to speak for herself in family court hearings. She had an assigned law guardian who, Amkia says, "never expressed my views, never told the judge that Amkia stated she wants to go home."

During her two years in familial exile, Amkia's ulcerative colitis, a condition that may be aggravated by stress, continued to act up. In May, after two years of fighting in family court, Amkia was allowed to live with her mother again on a trial basis, with biweekly visits from child protection authorities. Under her mother's care, Amkia is receiving Imuran, an immunosuppressive drug that often mitigates the symptoms of colitis, a mysterious disease for which there is a wide range of possible remedies, none of them surefire, and no cure. Because of what she considers unfair treatment by both Montefiore and state authorities, Phifer has filed lawsuits against them both.

Robert Beard was the general counsel for the International Coalition for Medical Justice, the group that represented Pam Anderson in her battles with the Terre Haute CPS and helped her maintain custody of her son Anthony. He also worked in state departments of social services for 15 years. "We run into problems when public health decisions are made in a political climate," he tells me. "People might not necessarily trust government, but they do tend to trust medicine. It's something in government social service work that we all need to be on the alert for. It's too easy to think that we know everything that needs to be known because we are the state and we're right."

It's impossible to know with any precision how often state or medical authorities step in to deny parental rights to make medical decisions for their children. The defunct ICMJ was the only national organization specifically dedicated to the issue. But more and more cases seem to be piling up. Former ICMJ board member David Rasnick, a retired pharmaceutical drug developer, says that he hears about cases all the time. He says "it's usually poor parents who are maybe used to thinking they have to do what doctors tell them, and don't have the resources to fight anyway." But as the stories recounted here suggest, it seems that even poor or socially marginalized parents are finding the will to fight back.

Fifty years ago, would a single black mother like Pam Anderson have had any support, much less the nerve, to stand up to the doctors, social workers, and cops who wanted her son to take a potential poison because of their assumptions about blacks and drugs? The arrogance of doctors can be hard enough to fight; when they can call in state agents, it gets even harder.

It's not easy to pinpoint one reason why these cases of parents fighting the medical state are happening more frequently, but one thread common to all these stories is information. Kathleen Tyson was familiar with arguments against AZT through the Internet; Pam Anderson's aunt was familiar with ICMJ through something she'd seen on TV; the Carrolls were strengthened in their objections to Ritalin when early local news accounts of their troubles brought phone calls from other parents. The more a citizen is able to know and learn, the more likely it is that he or she will have the will to argue with authority. Fortunately, information is increasingly decentralized and accessible, from hundreds of cable channels to thousands of specialty magazines to the cornucopia of the Internet.

And when someone's kids are involved, the motivation to fight back is especially strong. "I've met these mothers, and one thing I'd never want to do is come between a mother and her child," Rasnick says. "They want what's best for their kids, and they initially assume that a doctor is going to give them the best advice and do what's best for the kids. But if they see the kids getting worse instead of better, or they think what the doctor wants could be dangerous, they'll do whatever they have to that they think is best for their children."