Wednesday, June 3, 2009

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.


Sue said...

I have long thought that there is room for a field of counseling/support for a "my sibling has special needs" program. Lots of kids face special challenges in growing up themselves because of the challenges of a brother or sister who is ill or challenged in some way. Some of these might be prevented by selective abortion, many others (cancer patients, for example) wouldn't. Abortion is not the (only) answer. I think a more significant approach would be to seriously explore the medical care provided to such children. Medical ethicists and healthcare providers (and parents) should look at whether expensive medical treatments will actually improve the quality of life rather than just prolong it. At any age, treatment should be based on a cost/benefit analysis.
I was talking to someone yesterday who was telling me of a young person who is in need of a lung transplant -- a very expensive procedure. With the procedure, this patient will perhaps gain five additional years of life; without it, the prognosis is less than one year. Is four years worth the financial and emotional costs? Were the expensive medical procedures that have kept this person alive (with a chronic condition that showed in infancy) to age 30 or so, added to the costs of education, etc. justified?

Perhaps what we really need in our society is an understanding of the value of death. Life at all costs may not be the benefit it is often accepted as being. Perhaps, in the words of the movie and song from years ago, it's time to "live and let die."

To everything there is a season and a time . . .

Citizen Jane said...

Hi, Sue!

Yes, it's easy for ideologues to take an all-or-nothing, life-at-all-costs position--especially when they don't have to suffer or watch loved ones suffer. To put ourselves in someone else's shoes requires imagination--exactly what radical extremists usually seem to lack.

Seeing the complexity of things, of course, makes it harder think. It requires tolerance--tolerance of doubt and uncertainty, tolerance of others' choices. It's so much easier simply to scream "Murder!" and start shooting--literally or figuratively.

Many thanks for your thoughtful analysis and excellent examples.