Testimony to the Obama Administration, February 26, 2010
The last day of my childhood was Saturday, November 22, 1975. I was thirteen years old.
I galloped my horse through the woods, then I rode my bike to a friend’s house and we ran together all afternoon. I’d had no injury, but that night my left knee swelled like a melon; by bedtime I could barely walk. In a matter of weeks, so much pus was draining from my knee and running down my leg that my parents put a cookie sheet underneath to catch it. Within a month I was bedridden*and stayed that way for almost a year. Another six months in a wheelchair left me a teenager with a fused, hideously deformed leg and emotionally crippled by post-traumatic stress disorder.
Yet I never saw a doctor. I never received any medical treatment. I was a third-generation Christian Scientist living in Lexington, Massachusetts, within twenty miles of the Mother Church in Boston. My parents treated the sudden infection in my knee the same way they treated every illness: by having a Christian Science practitioner pray. Christian Scientists believe that mortal life is unreal: they believe that understanding the spiritual universe created by God results in physical healing. All injuries and illnesses are treated this way*from paper cuts to cancer.
The year before, in 1974, a loophole in child abuse laws was initiated by the Nixon Administration that allowed parents to choose so-called religious treatment for their children even if it meant denying them urgently needed medical care. Federal law still contains a loophole that permits states to ignore the kind of torture I experienced, and 39 states have elected to have such loopholes.
Years later, my bone disease was identified as osteomyelitis, a strep infection that can settle in a joint. While serious complications can develop, immediate treatment with antibiotics often results in a good outcome. But my family saw my swollen, stiff knee as a mortal illusion to be corrected through prayer. About five weeks from the onset, my leg began to drain an alarming amount of pus. My mother called a Christian Science practical nurse to help care for me, a nurse trained by the church in strictly non-medical methods, forbidden to diagnose disease or dispense medicine.
And I believed only prayer could help me: I never expected or even wanted medical treatment. I was bedridden for ten months in 1976. I lost weight. I couldn’t bear to have my mother hug me, the slightest motion was agony. I sensed I might die. Some nights, I was afraid I wouldn’t die. I was fourteen years old.
My school, friends and neighbors were aware I was seriously ill and being treated with prayer. At times I screamed in pain, but none of the neighbors investigated. Only the mother of my best friend was concerned enough to call a lawyer but was told it was unlikely that I could legally be hospitalized. As a last-ditch effort, my friend’s mother sent an ambulance to our house, but my mother sent it away. She told me afterward the driver thought someone was having a baby.
This faith-based medical neglect hid me in plain sight behind the respectability of Christian Science, under the radar of politically correct religious tolerance. Even when they feared for my life, my parents seemed incapable of choosing medical help. By Christian Science policy, a practitioner must refuse to pray for clients who receive medical care, and my parents were terrified that hospitalizing me would lead to my death. Though I had a phone by my bed on those nights I cried, it never occurred to me to call anyone except the practitioner.
I outlasted the disease. My leg was scarred to the bone and my knee fused at an angle of about eighty degrees. But my school never asked for details when I finally lurched back to class on crutches after eighteen months, wrestling with depression, anxiety, eating disorders, claustrophobia, and panic attacks. Eventually I dropped out of high school.
Orthopedic specialists were unable to replace my fused knee. By the time I reached my forties, my foot and ankle had deteriorated until I could barely walk. Three years ago today, February 26, 2007, I had an elective above-knee amputation.
I remember clearly the agony and anguish I felt as a child. I remember that no adult stepped forward to end it. The law authorized my parents’ decision to leave me untreated, and the sanction of the law discouraged others from doing what is right. But refusing to act on the pain a child feels is criminal.
It is my sincere hope that my story will inspire the Obama Administration to realize that federal regulations must be amended. I hope you will encourage Congress to amend the Child Abuse Prevention and Treatment Act, (CAPTA) so that states protect all abused and neglected children equally instead of excluding religious-based medical neglect from their definition of child abuse. There is no right under the constitution to religiously based child abuse.
My case is not unique: children today are in danger. Despite the abuse inflicted upon these children, most states have exemptions from child abuse laws that permit children to be endangered as I was. The need to protect innocent children who are being hurt by these laws is urgent and immediate. When states aren’t unequivocally required to document or classify cases of religion-based neglect–and remove children from homes where this kind of abuse occurs–the consequences are completely unethical and morally unacceptable.