A Bioethics of Love

This is by far the most interesting thing you will read this week.

Helen Rittelmeyer has written a piece detailing caring for a sister who is mentally retarded, and considering the ramifications of contemporary bioethics: namely, clarifying the crucial differences between the elimination and alleviation of suffering, and whether our impulses to eliminate suffering, rather than endure it, make us poorer in the long run.

A more mature version might be: A healthy interest in happiness is good, but only when tempered by a suspicion that happiness is less an ultimate goal than a side effect. A man could live a good life by pursuing virtue, personal excellence, love, or salvation, but, if he does nothing but chase pleasure for its own sake, his life will be happy—and very, very small.

So far, so uncontroversial. The missing link between the above summary and a grand narrative of cultural decline is this: As idle pleasures become more and more alluring, they become harder and harder to resist. One need not be a paranoiac about the decline of civilization to admit that leisure is more appealing than virtue, which demands greater sacrifices and promises less straightforward rewards. As our entertainments offer greater thrills at cheaper rates, the choice between the good fight and good fun starts to look obvious.

It used to be that crotchety bellwethers of decadence would nudge our country towards self-discipline by holding up its manliest heroes and reciting Teddy Roosevelt’s paean to men who dare (which made those Americans who could not so much as go to the store without assistance begin to feel very nervous). But different ages need different heroes. Other generations had to contend with the temptations of consumerism, luxury, and ever-increasing opportunities for laziness; ours has to contend with science. The fantasy is the same: the eradication of pain, and the eventual obsolescence of all those habits that feel awful but build character. Science in our day, like leisure in others, has improved so rapidly that its champions have begun to suspect that the age of painlessness is finally at hand.

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To frame the idea in a different way, we all hope for our friends’ continual self-improvement: that our favorite penny-pincher will become more charitable, that our directionless nephew will discover some driving passion, that the melancholic next door will find inner peace. But in none of these cases would we want our friend to become someone else. They should become better, but should stay recognizably themselves. When a man’s disability is fundamental to his character, then there is no difference between wishing for a cure and wishing he were someone else. As Jim Sinclair put it in 1993, “It is not possible to separate autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’”

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Love—whether it’s love for a sport, love for one’s sister, or love for humanity in all its forms, however grotesque—is the thing that makes a man say, “Sacrifice. That’s all.” Its yoke is easy, its burden light. Life with a disability involves sacrifices, some of which are merely onerous and should be eliminated, some of which cannot be eliminated without implicitly disputing love’s power to turn sacrifice into a gift.

Science has asked us to endorse its vision of a perpetually comfortable and easy world, and so we cannot help but make a firm choice, now, whether to celebrate self-discipline or to resent its necessity. If we choose the latter, we may soon find ourselves living in the world of Wall*E—painless, and pointless. If we choose the former, we may find that the prophets of our new asceticism are the deaf parents who decline cochlear implants for their newborn, the wheelchair-bound employee who finds nothing undignified about asking a co-worker for help every morning, the mother who carries a Down Syndrome baby to term—those who have had hardship thrust upon them and, nevertheless, have found some nobility in it.  Science and disability law will both continue to develop, but we must be careful in choosing the goal toward which their progress is directed.

You must read the piece in its entirety.