Shadow People

There are human organisms the public never sees and, for the most part, can’t imagine. The most horrifically deformed and least recognizably human of these unfortunate creatures usually suffer their short, miserable lives in institutions. A few are hidden in homes, kept by families whose entire existence becomes distorted beyond recognition by the presence of a child that is not a child.

I knew one such creature, met one such family. As a family crisis therapist, I was dispatched to a home where, according to the referral, a teenage girl was “out of control”—defiant, disrespectful of her parents, skipping school, possibly on drugs. I arrived to find a young woman with wild, dyed-black hair and “goth” makeup and clothing—clearly the “identified client.” This child was the oldest of three siblings. The middle girl was very bright, polite, and interested in the whole procedure. Although the family reported no problems with her, she looked very sad to me. Then the mother brought in the youngest child—a pathetically deformed little creature that I honestly would not have recognized as a human being had I not been told that she was a “sister.”

This mistake of nature, whom I’ll call “Annie,” had a very tiny, round body and oversized head, which she couldn’t hold upright. Her arms and legs were limp, useless appendages. She was about eight years old when I met the family but entirely unable to communicate. She grunted and drooled throughout our conversation, while her mother kept her propped upright beside her on the couch. As I tried to get an overview of the family history, the conversation inevitably led back to Annie. Frail and underdeveloped, her life was one agonizing, prolonged medical crisis. At any given time, one parent or the other was likely standing vigil over this child—sometimes in specialized, out-of-town hospitals—while the rest of the family limped along with very limited financial, emotional, and psychological resources.

The most pathetic thing about this whole situation was that nobody talked about Annie. The oldest daughter was a problem child—that was their story, and they were sticking to it. Nobody would broach the subject of where that teenage anger came from. Given the chronic pain the family had been in since Annie’s birth, it was just too painful to suggest that she was the source of the oldest child’s angst. At one point, the oldest girl admitted that when Annie came along, she and her sister “lost” their parents. There was no time, money, or energy to celebrate the growth of the “normal” children, as they went through the various passages of their lives—birthdays, proms, graduations. There had been no family outings or vacations. Life revolved around the needs of the neediest member of the family.

I once worked with a woman who had made a different choice when confronted with the birth of a hopelessly handicapped child—she and her husband put their son in an institution. Shocked and horrified by the hopelessness of having a son who could never walk, talk, or enjoy life in any way, the couple had elected not to bring more children into the world. Eventually the marriage dissolved. When I met her, this middle-aged woman was living alone, traveling two hundred miles every two weeks to visit the son who could never recognize her. Consumed with guilt that she couldn’t do more for him, she seldom mentioned her son. The subject came up one day when another mother was bemoaning the fact that her children were growing up “too fast.”

“Don’t even say that,” said my coworker. “My son is 16 years old, and someone still has to change his diapers.”

There’s a myth that nature aborts its worst mistakes—“babies” that might cling to life but never be able to “live.” Not so. Uninterrupted, many of these pregnancies result in birth. Sometimes there are signs of trouble at some point during gestation, but life is stubborn, and modern medicine is very good at sustaining it.

When the unfortunate parents of such unfortunate children chose not to burden their deformed offspring with the misery of life, Dr. George Tiller was among the few who could or would help them make what they believed to be the most moral of decisions. For this, he was executed.