I am going to be posting a series of articles I have published over the years. Some are about Aidan, some talk about him with reference to Chinese philosophy, and one or two extend Chinese philosophy to other issues. Most of these are out of print on the web, and I want to list them on this site. This first one (below the fold if I can make that work) was published on the New York Times op-ed page on November 30, 1998. They gave it the title "Productive in his own way." (I did not like that title since, as you will see, it contradicts my main point! But when the NYT gives you space, you take their title!)
Productive members of society.
This is what most education, training and employment programs for disabled people are intended to create. It is a good and noble purpose that has, quite literally, opened doors for many. Whatever good it may bring, however, this utilitarian approach could be fatally flawed if crudely applied to the medical care of all disabled people. It would tolerate, perhaps even condone, the death of my son.
Aidan is severely disabled, the result of a rare combination of brain abnormalities. Now 6 years old, he is more like an infant: he cannot hold his head upright; he cannot crawl, walk or talk. The seizures that fire through his brain have proved incurable after a dozen or more medications. He is profoundly mentally retarded. We feed him through a tube that runs directly into his small intestine, to avoid aspiration pneumonia. The visual world is, for him, a dim play of shadows.
It would seem, then, that Aidan is not and will never be a ''productive member of society.'' Insurance companies are especially frustrated by Aidan's lack of productivity. His care is expensive, with many hospital stays, regular visits to various doctors and more than $1,000 in food bills a month. Once, when a nurse friend of ours was arguing to an agent of a health maintenance organization that she should continue her visits to Aidan, the agent complained that it was the parents' fault, all of this expense, for ''keeping these kids alive.'' Care for Aidan, the agent implied, was socially irresponsible because it took resources away from other, more promising and profitable uses.
These agents press at us constantly, saying that the formula specially made to suit his tube-feeding is not ''medically necessary,'' and therefore not covered. Or they balk at authorizing a referral to yet another specialist. They think that Aidan's limited prospects are just not worth the work and anguish.
But Aidan is worth it. His value comes precisely from the challenge he poses to the usual definitions of ''value.'' He is a living reminder that the range of human experience is broader than the narrow confines of balance sheets and business plans. While he will never pay back society in financial terms, he certainly gives to those around him.
To my wife and me he has given the gift of perspective. A good day now is not a matter of more income or greater social status or new things from the mall, but a time of fewer seizures or his comfortable sleep in his own bed. He has expanded the world of his little sister, Margaret. Though only 4, she is not afraid of wheelchairs or white canes; she knows that not everyone walks or talks or sees.
He has a similar impact on his friends at school -- yes, he is entitled by law to be included in the local public school. His classmates were put off at first by the wheelchair, the seizures, the strangeness. But after a simple explanation -- ''he was just born that way'' -- they come to accept him, even compete to push his chair or hold his hand. Some have forged real friendships with him, asking to trick-or-treat with him at Halloween or inviting him to a birthday party.
His most profound effect, however, is the reflection he inspires in many who meet him. Without a word, he poses the deepest questions. What is a life? What makes any life, even one so limited, worth it? Strangers have come up on crowded streets, touching his shoulder or tousling his hair, giving us their abbreviated answers. Usually they say something about love or grace, something well beyond the material concerns of everyday life. With Aidan, it's never about productivity, it is about humanity.