Imagine loving an infant who would never roll over, sit up, crawl, toddle or run. Imagine worrying about their future. What would you do to make their lives more comfortable? Time magazine is running a series of articles about the ethical dilemmas surrounding a ‘pillow angel’s’ parents’ decision to use hormone and surgical treatments to halt their child’s physical development. The first article, Pillow Angel Ethics, offers us a glimpse into the doctors’ thoughts and decisions as they navigate “the Ashley Case”.
The ethics committee essentially did a cost-benefit analysis and concluded that the rewards outweighed the risks. Keeping Ashley smaller and more portable, the doctors argue, has medical as well as emotional benefits: more movement means better circulation, digestion and muscle condition, and fewer sores and infections. “If you’re going to be against this,” Gunther says, “you have to argue why the benefits are not worth pursuing.” They knew that the treatment would be controversial, though they did not quite foresee the media storm that would erupt when they decided to publish the case and invite their peers to weigh in. “I felt we were doing the right thing for this little girl—but that didn’t keep me from feeling a bit of unease,” admits Diekema. “And that’s as it should be. Humility is important in a case like this.”
I think we should all be very frightened of the possibilities this opens before us, this gaping Pandora’s box of alteration, this Brave New World. When I was a teenager, I volunteered at a special ed school/facility. I worked once a week, all day, with a group of people dealing with severe mental and physical disabilities/handicaps/challenges/choose your politically correct term for the day. Autism. Mental retardation. Blindness. Sandy had all three, and sat in the middle of the room rocking herself and screaming all day long. I remember Barry, with the radiant, sunshine-y smile of a four year old and the body of a 20 year old, who would sometimes get overwhelmed by his own hormones and well, hug a little too hard, a little too enthusiastically… I know Sandy eventually became a ward of the state.
I couldn’t tell you if any of these people would have been happier if their physical development had been somehow artificially halted to match their mental age and abilities. I’m not going to pretend to answer that question. I am simply going to shout loud enough for everyone to hear: Don’t point fingers and get nasty for some knee-jerk reaction of right or wrong. You don’t walk in those parents’ shoes. The majority of us never will.
If you would like to read about this family’s choices firsthand, their blog is here.