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Extraordinary Lives: Disability and Destiny in a Technological Age
Stephen L. Talbott

Chapter 3: The Many Voices of Destiny

This chapter is a review of Expecting Adam by Martha Beck (New York: Random House, 1999). Hardcover, 328 pages, $23.95.

Science has steadily pulled back from the fullness of our experience, contracting into a subtle and pinched search for reliable mechanisms, abstract and remote. In the face of this science, it is difficult to hold onto any conviction that we bring a resolve, or task, or destiny with us to earth and that we converse with this destiny through all the circumstances of our lives. Such intimations of destiny as we may encounter almost inevitably fade toward the indistinct margins of our existence. Or else they erupt into flaky theories all the more understandable given that the prevailing science, with its necessary discipline, has abandoned the field.

It's not much use arguing for or against any notion of destiny in general terms. All we can do is to look at our lives as fully and dispassionately as possible, ignoring nothing because of our presuppositions. Then we can try to hear what, if anything, speaks through the whole.

Or else look at someone else's life. The author of Expecting Adam offers us such a life -- or, rather, a group of lives -- and what speaks through them is powerful beyond words.



Martha Beck had always felt revulsion in the presence of retarded people. This was still true when, in the aftermath of a nearly disastrous automobile accident, an obviously retarded passer-by looked her in the eye and said, "He's a good baby, ma'am. You take care of that baby."

It was only then that Beck -- who a moment before had found herself unreasonably peaceful beside her shell-shocked husband as their car spun wildly out of control through onrushing traffic -- realized she was experiencing the first, faint symptoms of another "accident". She was pregnant. A few months later she would discover that the developing child had Down syndrome.

Beck and her husband, John, already parents of an eighteen-month-old daughter, Katie, were hard-driven, rational, stiff-upper-lip Ph.D. candidates at Harvard. Earlier, John had been roundly castigated as "a disgrace to this institution" in front of eighty-nine other students by a world-famous economics professor when he missed two days of class while Lamaze-coaching Martha through their daughter's birth -- a tongue-lashing "that made him wake up in a cold sweat for months afterward". They knew another couple who aborted a planned pregnancy after a professor scheduled a crucial, three-day test near the expected delivery date. Martha herself was studying the sociology of gender in company with many fellow staunch feminists: "I could hear them in my mind, comparing me to a rabbit, a brood sow, a member of some primitive tribe that hadn't figured out the connection between sex and reproduction".

Falling Apart, Coming Together

But there was also an entirely different set of motifs playing out in Beck's life. She had vaguely sensed it first as a kind of orchestration, an elegant, behind-the-scenes string-pulling the night she conceived -- when, somehow, beneath it all, she knew she was conceiving despite having taken all the usual precautions. The same sense returned a few days after the automobile mishap.

By the time the five minutes had elapsed and the pregnancy test results were undeniably positive, I knew that I would not be scheduling an abortion. That was all I knew. I wasn't sure why I had made the decision to continue the pregnancy. I could feel the puppeteers around me, sounding their invisible bells in some inexplicable but irresistible celebration, and I strongly suspected that this meant I was losing my mind. I checked to see if I was still pro-choice. I was. I examined my internalized schedule for the upcoming year: my teaching, caring for Katie, intense classwork, John's travel. This was simply not the time for a baby, I thought. But at the word baby, the joyous carol swelled again, and the magic filled my eyes with tears. I stood up, teetered a little, and went to tell John that he was going to become a father for the second time.

Because of what was then an undiagnosed immune system deficiency, this pregnancy, like her earlier one, was in many respects a nightmare. Weakness to the point of immobility, many faintings (sometimes in public places), inability to keep food or drink down, repeated hospitalizations -- these marked the weeks and months of her expectancy.

Once, on the occasion of her first hospitalization for dehydration, Beck fell asleep and dreamed one of those vivid, visionary sorts of dream. An ageless youth handed her a piece of paper. "Here", he said in a voice so resonant and gentle that it brought tears to her eyes. "The intensity of my fear was matched only by the intensity of my desire to see what was written there."

The words on the paper were written in a language she did not know. But they carried a force and significance much greater than any words in English -- a force and significance she immediately grasped.

Reading it felt like coming home to my native country after many years in alien territory. The words of this unknown tongue had been laid down in a firm, graceful hand, and they shone. Literally. A brilliant golden light, like the reflection of the setting sun over water, flashed and sparkled from every mark and line. It was as though the pen had not put down pigment but scraped away material reality to reveal something inexpressibly beautiful shining beneath it. As I read the letter, I felt a deep comfort trickling into my heart the way the glucose solution was trickling into my veins.

The extremity of her physical condition was certainly conducive to "visionary" experiences -- a fact of the sort she continually recalled to her conscious mind. But there are other, less manageable levels of understanding. After the dream, she says,

I was irrationally certain of three things: that the ageless young man across the table from me was the fetus I carried in my womb; that this being loved and respected me as his equal; and that there was "something wrong" with the baby.

Later, when Adam was three years old, and before he had learned to speak at all, there was a time when Beck reached an unusually low point of frustration. She had just spent fruitless hours trying to teach the boy to speak his first coherent syllables. (She compares his speech at that time to the sound of "car wash" repeated backward.) Afterward, as they passed through the supermarket check-out counter, he gestured to her that she should buy him a rose. She didn't understand why he preferred the rose to her offer of a candy bar.

The next morning, he padded down the hallway to her bedroom, appearing at the door with the rose in a bud vase. Beck acknowledges, "I didn't realize that he knew what vases were for, let alone how to get one down from the cupboard, fill it with water, and put a flower in it". He walked over to the bed and handed her the rose, saying in a clear, calm voice, "Here".

It had been years since I had thought about my dream at University Health Services, years since I had heard the incredible gentleness in the voice of the young man who had sat across the table from me -- the same voice I had just heard coming from my mute son's mouth. I stared at Adam, almost frightened, as the dream flashed into my mind. He looked back at me with steady eyes, and I knew what I had known -- what I should have remembered -- all that time: that his flesh of my flesh had a soul I could barely comprehend, that he was sorry for the pain I felt as I tried to turn him into a "normal" child, and that he loved me despite my many disabilities.
Then he turned around, his little blue pajamas dragging a bit on the floor, and padded out of the room.

Throughout her pregnancy, Beck had "the eerie impression that my life was completely under control -- but not my control". Strange, sometimes disturbing experiences kept happening -- things she did not even confide to John, lest he "think I was an idiot". But the underlying effect was always to increase her "irrational" certainty that she was finding the place where she belonged.

Beck's memoir is filled with a seemingly endless stream of inexplicable episodes. Thankfully, she is not unduly concerned either to explain the strange events or to explain them away. She simply offers us the facts of her experience, although she confesses that

It worries me to think that I will be lumped together with the right-to-lifers, not to mention every New Age crystal kisser who ever claimed to see an angel in the clouds over Sedona. I am reluctant to wave good-bye to my rationalist credibility. Nevertheless, the story will not stop unfolding, and it will not stop asking me to tell it.

But the "wondrous signs" are not the real point of the story. The real point was the healing influence Adam brought into her and her husband's lives almost from the moment of conception, even if the means of healing often felt at the time like a crushing blow of fate. That, as it happens, is often the only way we can be saved from ourselves, or else, perhaps, it is the only way our selves can save us.

At Harvard

Fate lay heaviest on her after a mid-pregnancy test revealed her child's Down syndrome. At the Harvard bookstore she picked up a 1950s-vintage text about the mentally retarded. It had a section about Down syndrome children and "gave absolutely false information about the inability of such children to control their bodily functions, and their antisocial inclinations". Further, it listed their IQ as about 35, which it proceeded to compare with a chimpanzee (50) and an oak tree (3)! "It was impossible for me to keep from calculating that this meant my son's IQ would be about 130 points below the average of my oft-tested siblings, and only 32 points higher than the plants in Harvard Yard."

At the time, Beck could only believe all this. She didn't know, for example, that Adam's skills at socialization, like those of other Down syndrome children raised lovingly, would prove superior to most normal persons'. Amid her confusion and torment, she sat through a Sociology of Gender seminar where one class session was about "New Obstetrical Technologies". A young man leaned across the table and declared, "It is the duty of every woman to screen her pregnancies and eliminate fetuses that would be a detriment to society!"

There is no space here to chronicle all Beck's struggles at Harvard, except to say that her emotionally jolting portrayal of pretentious professors and students must have a lot of people squirming in anonymous discomfort. One all-too-typical example will have to suffice. John Beck was once called into the intimidating presence of "Goatstroke", an economics professor who spent much of his time with Nobel Prize winners and heads of state.

"Mr. Beck," he said, lapsing into the formal address he used on undergraduates and other lesser beings, "let me tell you something about myself. When I was an assistant professor, working on my first book and trying to get tenure, my wife -- my first wife, that is -- discovered she was pregnant."

"Oh," said John.

"I was quite moved, at the time -- I mean, it really is quite something to think that a child with your genes has been conceived. But you see, the timing was all wrong. If that baby had been born, it would have interfered with my writing, my research. I decided that she needed an abortion, and I've never regretted it."

"You decided," John croaked.

"What?" said Goatstroke.

"Nothing."

John was having one of those epiphanies men sometimes get, where for a brief moment they can see what the world must look like through a woman's eyes. He was thinking about the way I pored over my pregnancy books and felt for the baby's hands against my sides and cried at the picture on the ultrasound screen. He wondered how many other decisions Goatstroke had made for his wives.

"You have got to understand," Goatstroke went on, "that this is not some game we're playing. This is your career, John. You must have your priorities in order."

Slowly and with much struggle the Becks did get their priorities in order. It required, among other things, some peculiar, visionary experiences before they could see through to the hollowness of some of their most revered professors. The eventual result was an exhilarating openness to whatever life might bring, even if it meant the sacrifice of their cherished, Harvard-bred goals.

As Martha put it later, when Adam was three years old (actually, the words were given to her uninvited by a weird woman who, out of the blue, accosted her as if with a message from Adam): "He says that you shouldn't be so worried. He says you'll never be hurt as much by being open as you have been hurt by remaining closed".

Enjoying Life

Becoming open was a long process. She tells, for example, about learning from the way others cared:

The people who spend their lives working with disabled children are the most accepting, loving, optimistic-but-realistic human beings you could ever meet. To them, no child, no matter how disfigured or inept, deserves anything less than unconditional acceptance. Adam's therapists probably don't know that I, with my three Harvard degrees and my relatively sound body, got more from their sessions with Adam than did Adam himself. As I sat watching them, feeling the kindness in the air around them, all the parts of me that I had sent to the Deepfreeze years before thawed, and stretched and began to consider the idea that the world might not be altogether hostile.

While at Harvard Beck had perfected a fierce and instinctive resistance to any betrayal of inadequacy or personal feeling or need for others. And yet, throughout her pregnancy this resistance was countered by the irresistible force of unsolicited kindness from others. "I had the constant sensation that I was a kind of radio tower, within which Adam sat broadcasting some kind of signal to the world around me -- not a verbal message but an unnamed energy, a sort of goodness, that drew out people's best and helped them connect with each other."

Adam doesn't seem to have lost that ability since birth:

When he begins each academic year, I am always surprised that school personnel who aren't used to dealing with "different" children seem concerned, and sometimes even a little angry, at the thought of having Adam around. Even the wonderful teachers and principals who are used to children with disabilities don't act inordinately thrilled by Adam at first meeting. I have to remind myself that the mysterious force field around him takes a while to affect people. By the second or third parent-teacher conference, I introduce myself as Adam's mother and wait for their faces to light up. They always do.

After a couple of years of unexplained dreams about dolphins, Beck read the story of another Down syndrome boy whose mother, afflicted by similar dreams, took her son to a dolphin research center in Florida. The boy seemed to connect with the dolphins in a profound way, and woke up one night in his room several miles inland, grieving for a dolphin friend who, it turned out, had just died.

Beck herself was slightly resistant. Referring to dolphins as "those brainy sea mammals with the endearing expressions and the highly social personalities", she goes on to say: "I was a little chagrined to have developed such a trendy passion, but there was nothing to be done about it. The dream kept coming back."

So Adam, too, visited the center, and there Beck sensed "the same strange electric energy between Adam and the dolphins that I'd sensed around me before he was born". It may sound silly, she grants, "but I've been through too much to dismiss these things. I've also learned that I will probably never fully understand it. That's okay. Just being nearby is a privilege."

Adam disliked the water, and he clung tightly to his mother as she took him into the Florida lagoon. But when the dolphin, Alita, its powerful muscles "flexed like steel springs", suddenly burst through the surface next to them and gently brushed its head against Adam's hand, the boy let go "without a second glance" and abandoned himself to the animal.

That day with the dolphins, Adam wasn't scared of anything. Alita rounded the curve at the edge of the lagoon and headed back toward me, pulling him like a towrope from her fin. Adam was still laughing, the face below his golden hair radiating happiness. It is impossible to look into Adam's face when he smiles this way and not smile back. For some reason, that incredibly contagious grin reminded me of something Albert Einstein said: that the single most important decision any of us will ever have to make is whether or not to believe that the universe is friendly. Adam appears to have made that decision.

Listening

Reflecting on the various "paranormal" graces bestowed upon her through her son, Beck wonders about the justice of it all. After all, "people are tortured and killed and raped and pillaged on a daily basis, and if there are angels in the vicinity, they apparently just sit around watching -- wringing their ectoplasmic little hands, perhaps, but letting nature take its course".

Disdaining simple religious formulas about how the righteous will prosper, she tries to figure out "why some people get help from angels, and some get lobotomized by flying debris from freak wheat-threshing accidents". There hardly seem to be any satisfying answers. If there are angels out there, "they are working from a priority list that is very different from mine".

And yet, Beck's own story seems to offer at least a partial answer to her conundrum. The fact is that, for many of us, the news that our child had Down syndrome would hit us with roughly the same force and import as the news that he had been lobotomized in a freak accident. And if, unlike Beck, we held to that stance -- if we were not open to such graces as illumined her life -- our sense of unqualified disaster would surely find its own justification.

One needn't hold any of the established views on abortion to realize that, in a society where aborting "defective" fetuses is the norm, the Adamic graces are not the ones we are particularly looking for or opening ourselves up to. But what if we listened to the speech of all the circumstances of our lives, and then entered into conversation with whatever it was that came to meet us? Who can say in advance, or with stopped ears, what might emerge from such a conversation -- up to and including that most intimate of all conversations, the one with death?

I do not mean to suggest that we should all look for the peculiar signs and wonders that have been Martha Beck's lot. I for one have had a life-long, rock-solid conviction that, whatever the potentials for transcendently strange experiences in today's world, I myself would never have to worry about such things. And I've been right. I've always felt a strong identification with the conventional center and core of my own culture, even while finding myself compelled to seek an intellectual escape from its unexamined assumptions.

But I can nevertheless easily imagine that others live closer than I to those cultural boundaries defining reasonable and respectable experience. Beck seems to be one of them. In a way, though, the twilight-zone aspects of her story only get in the way of the deeper message. Many parents of Down syndrome children have experienced the full joy of a life-changing companionship without any intrusion of the "paranormal". That companionship and joy and change add up to the real miracle.

A miracle, in one worthy sense of the word, is whatever expresses those meaningful potentials of the world we have not yet fathomed. Wherever there is genuine meaning, someone is speaking. With our culture's several hundred years' inattention to the ways in which people and events speak -- ways that have little to do with the mere transmission of information -- much of the meaningful content of our lives has vanished from comprehension into the miraculous.

So there are far more miracles in our lives today than in the past; it's just that we've trained ourselves not to notice them. But they are there to be noticed. And many of us will find it easier to begin the noticing with the extraordinary help of a little Down syndrome boy named Adam. Proffering this help may well have been the task Adam brought to earth. Can any of the rest of us claim a more noble task?

Tinkering with Ourselves

It's easy to wonder whether the more extreme visions of a genetically engineered society are mere shock tactics to encourage the sale of books, or instead the best indication we have of a deep cultural current whose drift is so far recognized only by a few. But without doubt the holders of these visions claim to descry something deep and significant, reaching all the way to the roots of our own identity. It seems foolish not to take at least occasional note of their words.

With that in mind, I offer here a brief collection of extreme visions, followed by my own attempt to relate them to Martha Beck's story. (The quotations were gathered by Richard Hayes, an environmental activist and doctoral candidate in Energy and Resources at the University of California, Berkeley. They appeared along with an interview of Hayes in the Summer, 1999 issue of Wild Duck Review.)

Lee Silver, molecular biologist at Princeton University (from his book, Remaking Eden: How Cloning and Beyond will Change the Human Family, in which he imagines the not-so-distant future):

The GenRich -- who account for ten percent of the American population -- all carry synthetic genes. All aspects of the economy, the media, the entertainment industry, and the knowledge industry are controlled by members of the GenRich class. Naturals work as low-paid service providers or as laborers .... [eventually] the GenRich class and the Natural class will become entirely separate species with no ability to cross-breed, and with as much romantic interest in each other as a current human would have for a chimpanzee.

And again:

Anyone who accepts the right of affluent parents to provide their children with an expensive private school education cannot use "unfairness" as a reason for rejecting the use of reprogenetic technologies. Indeed, in a society that values individual freedom above all else, it is hard to find any legitimate basis for restricting the use of reprogenetics .... I will argue [that] the use of reprogenetic technologies is inevitable. It will not be controlled by governments or societies or even the scientists who create it. There is no doubt about it, whether we like it or not, the global marketplace will reign supreme.

Gregory Pence, Professor of Philosophy, University of Alabama (from his book, Who's Afraid of Human Cloning?):

Many people love their retrievers and their sunny dispositions around children and adults. Could people be chosen in the same way? Would it be so terrible to allow parents to at least aim for a certain type, in the same way that great breeders try to match a breed of dog to the needs of a family?

James Watson, Nobel Prize winner for discovering the structure of DNA, and Director of the National Center for Human Genome Research:

And the other thing, because no one has the guts to say it, if we could make better human beings by knowing how to add genes, why shouldn't we? What's wrong with it? ... Evolution can be just damn cruel, and to say that we've got a perfect genome and there's some sanctity to it? I'd just like to know where that idea comes from. It's utter silliness. (from Gregory Stock and John Campbell (eds.), Engineering the Human Germline. New York: Oxford University Press, 2000, pp. 79, 85)

Gregory Stock, Director of the Science, Technology, and Society Program at UCLA's Center for the Study of Evolution and the Origin of Life (from his book, Metaman: The Merging of Humans and Machines Into a Global Superorganism):

By applying biological techniques to embryos and then to the reproductive process itself, Metaman will take control of human evolution .... Populations that adopt such techniques will generally outdistance those that do not .... Like all major developments, they will cause great stresses within society. But asking whether such changes are "wise" or "desirable" misses the essential point that they are largely not a matter of choice; they are the unavoidable product of the technological advance intrinsic to Metaman.

And again:

Even if half the world's species were lost, enormous diversity would still remain. When those in the distant future look back on this period of history, they will likely see it not as the era when the natural environment was impoverished, but as the age when a plethora of new forms -- some biological, some technological, some a combination of the two -- burst onto the scene.

James Hughes, bioethics consultant (from his book, Embracing Change with All Four Arms):

The right to a custom made child is merely the natural extension of our current discourse of reproductive rights. I see no virtue in the role of chance in conception, and great virtue in expanding choice. If women are to be allowed the "reproductive right" or "choice" to choose the father of their child, with his attendant characteristics, then they should be allowed the right to choose the characteristics from a catalog. It will be considered obsessive and dumb to give your kids only parental genes.

Joseph Fletcher, professor emeritus, Harvard University (from his book, The Ethics of Genetic Control: Ending Reproductive Roulette):

Chimeras or parahumans might legitimately be fashioned to do dangerous or demeaning jobs. As it is now, low grade work is shoved off on moronic and retarded individuals, the victims of uncontrolled reproduction. Should we not "program" such workers thoughtfully instead of accidentally, by means of hybridization? Hybrids could also be designed by sexual reproduction, as between apes and humans. If interspecific coitus is too distasteful, then laboratory fertilization and implant could do it. If women are unwilling to gestate hybrids, animal females could.

On the New Eugenics

Few, I suspect, who appreciate Martha Beck's Expecting Adam (see above) will find it possible to contemplate these pronouncements about genetic engineering by leading intellectuals without yielding to disgust or fury.

That, of course, is not a particularly healthy response, and it may be part of what Beck had in mind when she said she was "very much afraid of being caught in the firestorms of controversy over abortion, genetic engineering, and medical ethics". But I'm sure she would grant that her experience as a parent of a Down syndrome child is indeed relevant to much of this controversy. Personally, I would say that her experience is what is most crucially missing from a great deal of it.

Here, then are a few brief observations of my own about those quotations:

** The first thing that strikes me is how easy it is for intellectuals to toss off grandiose statements-in-the-abstract, and how gut-wrenchingly hard it is for a Martha Beck -- or any of us -- to compose our lives into worthy statements that are true, beautiful, and good. When the former statements are not the distilled wisdom of the latter, something has gone badly wrong. Technologies give us the means to talk in a hollow way about all kinds of sweeping change, but the change that really matters is always and only the change we produce out of an inner, transformative work. The pursuit of any other change as if it could substitute for this work leads us along the broad and easy path to trouble.

** The genetic engineers and cheerleaders quoted above seem remarkably confident that they have mastered what the rest of us have not: namely, what it means to be human. This is odd considering that most or all of them would profess discomfort with the language of meaning as opposed to the instrumental language of science. Without hesitation they talk about making human beings better, as if this gave us an obvious roadmap for the re-engineering task. Rarely do they make their own roadmaps explicit, but you can be sure that, on their maps, they themselves count as better than Adam Beck.

When the Becks first faced the remote possibility that their child would have down syndrome, John took it for granted that Martha would abort the fetus. "It's like shooting a horse that's broken its leg", he explained.

A lame horse dies slowly, you know?" said John. "It dies in terrible pain. And it can't run anymore, so it can't enjoy life even if it doesn't die. Horses live to run; that's what they do. If a baby is born not being able to do what other people do, I think it's better not to prolong its suffering."

A highly distraught Martha responded, "And what is it that people do? What do we live to do, the way a horse lives to run?"

At this point John had nothing further to say. At an impasse, they wisely let the conversation die. John could only embrace Martha, who felt his heart beating beneath his coat.

For a moment, I let the anxiety in my chest relax, let myself forget everything I had to do that day, let myself feel utterly safe. And then I understood that John was answering my question, even though he didn't know he was. This is it, I thought. This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

On his part, Adam was capable of extracting endless joy from life -- much more, perhaps, than most of us.

The immediacy and joy with which he lives his life make rapacious achievement, Harvard-style, look a lot like quiet desperation. [Despite requiring less attention than other children] Adam has slowed me down to the point where I notice what is in front of me, its mystery and beauty, instead of thrashing my way through a maze of difficult requirements toward labels and achievements that contain no joy in themselves. Adam takes his joy straight up, in purer form than most of us can handle.

Who is so all-knowing as to tell us that the satisfaction and achievements of Harvard professors are more valuable for the race, more worthy of being granted existence, than those of Adam?

** As to the sufferings of Down syndrome children, aren't most of these inflicted by the rest of us -- that is, by our inability or unwillingness to overcome our own insecurities and discomfort in the presence of people who seem deformed? This does not put us in a great position to talk magnanimously about putting them out of their pain. Maybe we should just stop inflicting the pain.

To say that there is inevitable pain in great limitation may be a half-truth. But this is to ignore the age-old wisdom that overcoming our limitations comes close to being the essence of human life. Certainly it is the source of many of our deepest satisfactions. Probably the most truly handicapped people on earth are those who imagine themselves most free of limitation -- mentors for a new race of supermen. Lacking acknowledged limitations, they have ceased even the common struggles that might have made them into men.

** Read those quotations about genetic engineering a few more times, and pay attention to the inner gesture that seems to animate the words. I suspect you will notice a certain brittleness and superficiality, a play of logic without any profound wrestling with the meaning of the terms employed. And along with this goes the arrogance that always seems to follow when the force of logic is mistaken for depth of understanding. It is texts like these that convince me most fearfully of the possibilities for reducing ourselves to computational machines.

So it is that James Watson can sneer at those who believe the human genome has "some sanctity in it" -- apparently without recognizing his implicit claim that his own genome (and that of his fellow racial engineers) does indeed have some sort of sanctity to it, giving them the right to pronounce what forms of life are worth keeping around. He would be nearer the truth if he realized that the real sanctity and dignity accrue, not to a set of molecules, but to his innermost and truest self, which cannot easily be judged in terms of the material "accidents" of his existence.

Then, however, he would also have to grant that, at the level of this inalienable self, there is no comparing the "value" of persons. At least a vague sensing of this truth lies behind the fundamental political doctrine of equality before the law. It doesn't require any very elaborate reasoning to see that Watson and company have, in their own minds, already scuttled this doctrine. They are measuring the worth and potential of human beings by reducing them to the terms of mechanisms -- and there is no doubt that mechanisms, when they prove defective, can require discarding. The destructive implications this thinking holds for democracy need more attention than they have yet received.

** Take it with a grain of salt if you like, but my own surmise about the new, materialistic mysticism that speaks glibly of Metaman and spiritual machines and digital immortality is that it arises from fear. I mean the fear that we may not be just our molecules, or just the patterns of organization imposed on our molecules. Why is this a fearful prospect? Because it would mean we bear within ourselves the real burden of the future of the human race, not merely the pleasurable "burden" of philosophizing about it and tinkering with its objectified exterior. We bear this real burden, first of all, in our choices about what we ourselves will become, and then through our share in what those around us become.

I believe we will be in serious trouble until we realize that the future human being can be shaped only from the inside -- is now being shaped from the inside, even as we are distracted by our high-tech toys, busily envisioning how to program the DNA of a better human being. The best hope for the misshapen human being resulting from our distraction may well prove to be the Adams of the world.

** Finally, I am not saying we lack all justification for calling the Down syndrome child "abnormal" or even "defective". Surely these words point to a truth of the matter -- or, at least, they can if spoken with love and an awareness of our own extreme defects. Further, an awareness of what is defective naturally leads us to consider remedies -- must do so. If, as I said above, human life is about overcoming limitation, one should not say in advance what methods we might fruitfully bring to bear on the task -- up to and including genetic engineering.

The range of our moral responsibility, however, is determined not only by the range of our power to act, but also by the extent of our understanding. Our first responsibility is to recognize the limits of our understanding and the true springs of our actions. The foregoing remarks are intended, not to close off future possibilities, but only to suggest how deformed much of the engineering-oriented, futurist thought about these matters currently is. It is deformed because it ignores both its own limitations and its motivations.

If you want a guideline for dealing with the defects of others, your best bet is to consider how you respond to the defects of those you love most deeply. This won't immediately answer all the hard questions. But it's a good place to begin asking them. As Martha Beck writes, "Whoever said that love is blind was dead wrong. Love is the only thing on earth that lets us see each other with the remotest accuracy."

Copyright 2003 The Nature Institute

Steve Talbott :: The Many Voices of Destiny

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