Extraordinary Lives:
Disability and Destiny in a Technological Age

Stephen L. Talbott

Chapter 4: On Forgetting to Wear Boots

“I have no doubt that Camphill is an expression of a
great intuitive thrust out of the deep heart of nature
which has us in its keeping and knows that both we and it
are in mortal peril.”
(Sir Laurens van der Post)

Whenever friends visit my wife Phyllis and me, one of our favorite places to take them is the nearby Camphill Village in Copake, New York. The village is part of a thriving, worldwide movement for the care of people with special needs. You will find here villagers with Down Syndrome and a great variety of other mental handicaps — all pursuing their lives in a beautiful, restful, productive, socially supportive, and artistically rich setting. If there is a place that can bring healing to a high-tech society, surely this is it.

Dignity and Laughter

One of the first things likely to strike you about most any Camphill community (there are more than ninety of them worldwide, from Ireland to Botswana to India) is the beauty and craftsmanship evident in the buildings and their furnishings. Much of the craft work issues from shops where the villagers are employed — there are facilities for weaving, pottery-making, woodworking, candle-dripping, bookbinding, and jewelry-making, as well as dairies, bakeries, and gardens. At Camphill Copake a seed-saving venture has recently gotten under way, together with an herb garden and a laboratory for the preparation of herbal remedies and salves. There is plenty of healthy and fulfilling work to satisfy the villagers’ strong need to contribute something worthwhile to society.

Camphill villages spring from the same roots as Waldorf education, and they share the Waldorf emphasis upon an artistically shaped life. This emphasis extends from the long, beautifully carved, wooden tables in many of the living units (where the resident villagers eat regular meals with their house parents and any children who live there), to the celebration of seasonal festivals, to the frequent gathering for artistic performances in an auditorium that is typically the architectural crown of the village. (In Copake, pianists Andre Watts and Peter Serkin are among those who donate their time to perform for the villagers and staff.) Drama, dance, dramatic speech, music — there is always something to bring the community together in consciousness of the spiritual background of life in which we all are united. As a Camphill worker in Great Britain, Sybille Alexander, has put it:

The atmosphere in the villages is determined by the recognition of the dignity of each human being, the inner, spiritual work done by the leaders — and, of course, humor, without which the community life would be unbearable.

I can vouch for the place of humor. A few years ago, on a slushy winter day, we took a visiting friend for a walk through the wooded village in Copake. Loafing along a muddy path, we were overtaken by two of the villagers, women of older middle age securely bundled up against the weather and walking to their jobs in the bakery. As they passed us, they caught sight of our sneakered feet and broke into a fit of hilarity. “You forgot to put your boots on!” they exclaimed, pointing and laughing. We acknowledged our folly and joined in the merriment. After a brief exchange they passed on ahead, still laughing and chattering gaily. We cracked up, too, as we reconstructed their conversation for ourselves:

“Imagine letting people like that in here!”

“Yeah, don’t have sense enough to wear boots in the mud. I bet they wouldn’t even come in out of the rain!”

“If you ask me, they’re an ace or two short of a full deck.”

Trying to Communicate

More recently, I had a rather different encounter in the village. The staff had invited me to come speak on technology as part of a lecture series they were putting together. Knowing how deeply Camphill workers were in the habit of thinking about social issues and the human being, I put together an ambitious and fairly abstract talk. But when I arrived at the appointed hour in Fountain Hall, with its high-arching wooden beams and stained glass windows, I was disturbed to find the auditorium seats full of villagers.

I expressed my concern to the organizer, explaining that I had expected to speak only with staff and had not prepared anything appropriate for the villagers. (Not that I would have known how to prepare even if I had been forewarned.) She quietly replied: “Just speak your real concerns out of heart-felt conviction. That is what they need. They will hear what is important.”

“What is important?” I wondered as I sat down to await my introduction. Then, at the podium, gripped by self-doubt, I proceeded to deliver the hour-long talk I had prepared. “At least,” I thought, “only the staff will be in any position to ask questions afterward.” But when the time came, it was the villagers who thrust their hands eagerly skyward.

I called first on a lean, intense-looking gentleman in a suit and tie. Upon being recognized, Robert (whose name I learned later) stood up and began to speak earnestly while vigorously gesturing with arms, face, and body. But nothing came out of his mouth. There was only the sound of muffled struggle as inchoate words, trapped somewhere in the man’s throat, tumbled over each other on their way into some deep, internal void.

Yet he spoke with all the vivid force of a hellfire-and-brimstone preacher, and he began to move from his place as if carried along by the momentum of his own gestures. He traversed his row to the aisle and, still gesticulating with a message urgently demanding expression, began to approach the podium. Alarmed by the man’s almost violent and growing intensity, I began to wonder whether I might be in some physical danger — a puzzling sort of question to ask while you’re looking out over an audience that seems as serene and undisturbed as ever.

In the actual event, someone rose easily to meet Robert’s advance and gently ushered him back to his seat — a guidance he did not resist. Apparently, it seemed natural to everyone that he should have had his say.

Of course, I owed Robert a reply. So I told him that I envied his ability to speak with such force and passion, since my own great limitation lay in my inability to do so. And it was true. Robert’s force of conviction was fully on display, while his words remained bottled up inside him. My own intellectual work is in fact driven by great passion and conviction, but I learned long ago to choke off any outward expression of feeling. My words flow freely enough, but their passage into the outer world is cut off from the furnace of their forging.

Other questions and comments came. One villager told of enjoying a game of computer solitaire when she visited a relative’s home. Another confided to me afterward that the questions I raised were so gravely important that he would carry them into his nightly bedtime meditation. Some other comments I could scarcely understand — perhaps because I was not as attuned to what is important as my audience had been.

Gift-Bearers

Karl König, founder of the Camphill movement, once wrote that

I can help my brother only if I see the helper in him, [and] the receiver of help in me.

You will find throughout the Camphill movement a strong sense that people with special needs bring special gifts to the planet — perhaps exactly the needful gifts in our time. These folks can teach us the virtues our culture has largely disregarded — for example, the virtue of attending fully to the person immediately in front of us. Rose Edwards, a former Camphill worker, once told me,

I worked for eighteen years with extremely disabled children, and to this day I can recommend it as a tremendous background for life. Everything had to be exaggerated: you had to speak more slowly, be more patient, plan more carefully, be more present in the moment.

Her own manner of deliberate, thoughtful speech gave uncommon emphasis to her testimony. Hearing her words, I couldn’t help thinking of the contemporary habit (often proclaimed a virtue) of divided attention. I also thought of the fabled ethic of Silicon Valley, with its pride in raw efficiency, in supreme technical ability, and in “don’t get in my way or I’ll run you down” aggressiveness. At Camphill the whole point is to allow the other person to get in our way. That’s how we begin to see him for who he is, and thereby discover something about who we are — something other than what our preferred mirrors tell us.

When you create an environment like that, remarkable things begin to happen. What often catches people’s attention about Camphill is the extraordinary and unanticipated development their loved ones undergo there. Part of this is owing to the special gifts the villagers bring with them. König has remarked that, while we can often gain efficiency and speed by ignoring those with special needs, in some matters they may possess a speed and ability far surpassing our own. As a writer at the United Kingdom’s Botton Village Camphill has put it:

All kinds of issues can be discussed with far more grasp by people who are normal, yet the generosity of nature, the power of commitment to ideals, the capacity of forgiveness in those with special needs can be disconcerting to say the least. In the end, living with people with special needs is living with people and this is a symphonic task in which, at any time, any instrument can soar upwards and lead the melody to the accompaniment of all the other instruments in the orchestra.

Serving the Other

A great deal depends on an environment that supports, believes in, and encourages individual gifts and individual development. König describes the “College Meetings” at Camphills for children, where every week the staff of a house or entire facility come together to discuss a particular child:

The child’s case history is read, and then the teachers, helpers and nurses give their reports and impressions of the child in question. Many symptoms, signs and features are collected until — usually under the guidance of one of the doctors — the image of the child arises. His habits, achievements, faults and failures are laid out in such a way that gradually a complete picture of his individuality appears.

In this picture the staff find guidance that enables them to clear a path for the child’s continued growth.

All this echoes the way children are assessed in Waldorf schools, where the College of Teachers will often hold meetings to discuss the problems and opportunities facing a particular student. The contrast with the mentality behind standardized testing could hardly be greater. Certainly teachers must assess student performance — and in the most profound and intimate way possible. The problem with standardized testing is that it avoids any such rigorous assessment. It is a hopelessly crude tool, a means of studied ignorance rather than deep understanding. And, as a side effect, it removes all flexibility, the living qualities, from classroom engagement. When you know in advance exactly what knowledge the student-container is supposed to hold, there’s not much incentive to attend to the particular gifts and developmental needs, or the consuming interests, of the individual learner. Standardized testing is not student assessment; it is the refusal to assess.

No student’s needs and timing and achievement and potential can be assessed in exactly the same terms as another student’s. I suspect that, where teachers willingly acquiesce in the demand for standardized testing, two factors at work are laziness and fear. It can be both difficult and disturbing to confront what lives deeply in another human being. This, of course, is exactly the burden that Camphill workers take upon themselves. But the principle of the distinctive character of the individual is hardly less important in mainline schools.

Of Accident and Destiny

Whether it accords with our philosophical disposition or not, most of us have had some sort of an experience of destiny — for example, we have (perhaps unwillingly) felt that a horrific accident or dramatic change in fortune or a significant personal encounter was somehow “prepared” for us. What we met on these occasions seemed to be ourselves, or something that belonged to us. The events were “fated,” answering as if by some hidden intention to a need or potential of ours.

In other words, the accidents did not not seem really to be accidents; they were integral to our lives. But, at the same time, we could not feel ourselves reduced to these strokes of destiny, for we also stood apart from them; it was we who chose how to make them into material for further development. If they were part of us, it was because they presented us with the opportunity to exercise exactly the capacities that needed strengthening. All such events shape us, but they do so most crucially by giving us the opportunity to transcend them.

Of course, the prevailing, scientifically informed culture leaves little room for any very significant reading of these unusually freighted experiences. Nevertheless, given that the purpose of sound science is to elucidate experience and not merely to dismiss it, our inattention to these inklings of destiny is much more problematic than the effort to bring them into greater clarity.

But my purpose now is not to argue such matters either way. Rather, it is merely to point out that, without a strong sense of human destinies, Camphills would not exist. What is true of the “external” events of our lives, Camphill workers will tell you, is also true of your and my bodies as physical instruments for the expression of our selves: the instrument of my earthly existence is not an accident; it belongs to me. But at the same time, I am not just the instrument. There are many ways I can use it, and in the using I can to one degree or another grow beyond its limitations — grow by means of its limitations.

It is not hard for us to realize that the crushing, outward circumstances of life may have kept hidden from us some of the most powerful, ingenious, and significant personalities ever to inhabit the earth — a Mozart, perhaps, who never laid hands on a piano, a Gandhi whose crippling accident and unenlightened society left him in institutional darkness.

What you will find among many Camphill workers is a sense that this same truth applies to those individuals coping with the severe constraints of a defective physical organism. The self whose destiny it is to wrestle with such daunting limitations may be a self whose hidden resources and powers of development far exceed those of its helpers. The close connection between genius and the breakdown of normal function is well known. We are not just our handicaps. We are not just our symptoms.

A Parent’s Disconcerting Revelation

Carlo Pietzner, who helped found the Camphill movement in America, has spoken of the experience, both striking and shattering, when parents realize their child is more than his symptoms. They suddenly find themselves utterly alone in a society unable to appreciate their revelation. No one is prepared

to help them understand why there is more in the child than the symptoms of stammering, stuttering, not being able to learn to read, not being able to walk, not being able to feed themselves, to complete toilet training. Surely, yes, these are the describable symptoms, the incapacity of the instrument. And yet they can see and feel that there is more to it; there is the player to it. And if there is a player to it, it cannot be only an accident. This player must have the possibility of finding a way to play his sonata, however hollow the instrument may sound, or however many notes may be missing. (From Questions of Destiny. Slightly paraphrased.)

Whose life is not a broken song? Camphills are a testimony to the conviction that even the most troubled songs need singing — and more, that these may be, in their own way, songs of genius, giving voice to some of the most critical melodies and counterpoints in the sung destiny of earth itself.

As I said, I am attempting no explicit justification of such a view, remote as it is from conventional understanding. But Camphills are real places of practical effectiveness — remarkable sites of healing and inspiration exactly where the surrounding society would be least inclined to look for anything of much importance. My own inclination, in trying to glimpse a tolerable social future, would be to look at least as hard at what is going on in a Camphill village as to look at the excitements of Silicon Valley.

Copyright 2003 The Nature Institute