Such colors seem so surreal that we like to imagine we are seeing the colors of her secret world. And in a sense we are; rainbows were for years a major Enthusiasm, and even now there are few paintings that don’t include some version of the full spectrum. Nevertheless, Jessy insists on the plainness of fact; she tells those who ask that she sees the same colors they do, just changes them to “make it more beautiful.” Similarly, if the inclusion of a drainpipe seems strange, it is our eye, not Jessy’s, that has turned autistic literalism into surreality. The drainpipe is not emotioncharged but ordinary; it is there because it was there, as her foot was there as she looked at her father in his wicker chair. Nor does it occur to her that there is anything odd about the migraine lightning behind her church. Lightning is lightning and migraine is migraine; why not combine the two?
If the paintings open into her private universe — and they do — it is only secondarily through the color that reaches us. What reaches her, what illuminates the painstaking hours spent with her tubes and brushes, is the obsessional material. Shades of salmon are good, but what sets her smiling is the stratification. The word, with its many syllables, is a recent acquisition, but the Enthusiasm is not. Layers have been special ever since the days when she thrilled to road construction and pebblestones and tar. Heaters were special; lampposts were special; odometers were special; there are paintings of them all. Merrill Lynch and Godiva are special still, doubly special if you put them together. Left to herself, Jessy would paint an ATM machine; one day she probably will. It’s such happy obsessions (“all obsessions are good”) that make visible the emotional intensity of her secret life. Realizing that, we realize that as we no longer even dream of a triumphant emergence into normality, we no longer even want her to exit Nirvana all the way. In a development we could never have envisaged, it looks as if she, and we, can have it both ways. Through art she can keep in touch with the underground springs of her emotional life without threatening her life in the everyday — that emotional life that is so much more thrilling than our own. It’s a life she has no words for, but it’s part of — perhaps it’s at the bottom of — her oddly resistant happiness. Even if we could, we wouldn’t deny her that.
Yet painting, with its bills and checks and record keeping, is very much part of the everyday. Jessy paints, paintings bring checks, the numbers rise in her bank account as they once rose on her golf counter. The checks are a significant motivator for her, as the growing recognition is for us, who must answer inquiries and learn to negotiate the world of galleries and shows — social complexities forever beyond Jessy’s ken. But for us, and for her, what’s important about this demanding, absorbing activity, valued and rewarded by society, is not what it brings to her bank account or her reputation (a concept much harder to understand than stratification), but what it brings to her life. It interests people, predisposes them in her favor, encourages them to overlook behavior that needs overlooking. In autism, that’s important. Yet her painting’s real meaning for her life is even more ordinary. It gives her something to do. Something to do when she’s not forwarding mail, or changing the cat’s pan, or mending her clothes, or changing her sheets, or attending aerobics (a scheduled, repetitive, predictable, satisfying autistic activity), or making applesauce, or, as they say, whatever. But there isn’t any whatever for Jessy. Her expanded skills do not and cannot embrace the huge range of normality; she doesn’t know what to do with leisure. With nothing to do, she won’t go for a walk or call a friend. She reverts to the old, stereotyped behaviors. She still likes to rock.
So it is that her real achievements are in the realm of the practical, the necessary, the unromanticizable — the things that make her employable in the community and useful and welcome at home. How important it was that as a baby, however indifferent she was to others, she be attractive to them: clean, nicely dressed, no runny nose, no disgusting habits. We worked hard on that. Today she is still attractive, though not as lovely as that golden baby. Not that she cares. She has her hair cut unbecomingly short as soon as summer comes; when I suggest it’s nicer long she says it’s cooler. She dresses neatly, but it’s not from any interest in her appearance that she lays her clothes out so carefully the night before; it’s because if she feels hurried in the morning, if she sleeps a single minute past seven-fifteen, she will be intensely, irrationally distressed at the deviation from this one of the many routines that structure and maintain her world.
Routine, autism’s curse and gift. Jessy is at ease only when what’s to be done is done. The distresses of deviation are balanced by the reliability and exactitude that make her an efficient mail clerk, and the daughter I couldn’t do without. Once there was no motivation, then there were points, now there is routine. Does she enjoy these tasks? The question is meaningless. She does them because she does them, because she is radically uncomfortable if they are left undone. However trying her compulsiveness may be for those around her, routine gets the work done, makes life livable.
Nor is routine incompatible with creativity; routine maintains the growing beauty of her paintings. Once a commission is received and a painting begun, it must be completed, perfectly, to the last barely visible detail. Is that all there is to it? Here too the years have been about growth, not just growth in technique, but growth in what for want of a better word I must call sociality. When her work was first exhibited, years ago in a little local gallery, she was interested only in the refreshments. She is still interested in the refreshments, but now she also enjoys the praise. When people come to the house, she says, “Do you want to see my paintings?” and makes sure they look at every one. In 1993 a tiny reproduction of one of them was chosen to represent Massachusetts on the White House Christmas tree. When we showed her the story in the paper, she exclaimed, “So it’s the first time the president to hear from me!” Let this be the measure of her entry into the world we share.
The point, of course, is not to make her a willing drudge, at home, at work, or at her painting table. The point, now as always, is to maintain and expand the range of activity that makes her what we never thought she could be, a busy, useful member of the household and community. She’ll be late in her forties, probably, her siblings into their fifties, when her future becomes their responsibility. Whether she stays in her own home with a companion or moves to a group home or a sheltered village or lives with a brother or sister, her active usefulness will make the road smoother both for her and for those around her.
It is not only because she is useful, however, that I can write these words with a faith in a future I will not see. Usefulness is a tremendous achievement — her own, and that of all who have accompanied her on the difficult road to activity and self-control. But it is not for her usefulness that people love her, with a love that is that future’s best guarantee. They love her for her otherworldliness, her simplicity, her utter incapacity for manipulation or malice. They love her for her childlike purity.
Childlike. I have held off from using that word, although it must have occurred more than once to anyone reading my careful transcriptions of things that Jessy has said. For all the talk of “discovering the child within us,” it is thought condescending, lacking in respect, to compare a mentally handicapped adult to a child. But those who have lived with Jessy know that the truest respect lies not in the wishful insistence that she is really just like other people, but in the recognition, and the valuing, of what she is.
. . .
Arbeiten und lieben — to work and to love; were these not Freud’s measures of success? Jessy has learned to work, even to prefer activity to idleness. A golf counter made this possible, and it seemed a miracle. But no clicking mechanism can teach love. When I first wrote the Jessy story, thirty-four years ago, I made “love” the final word. Love, ours and other people’s, is the condition of Jessy’s life, little as she would be able to understand that. What, then, does love mean to her, and what does it mean if I write that she has learned to love? Twenty years ago, when her sister was lo
ng away and Jessy had shown no sign of noticing, she said out of nowhere, “I am missing her.” She didn’t say the word “love” then; like other emotion-words, it’s not part of her effective vocabulary. But I can guess how she loves, or rather, I don’t have to guess. She made it plain ten years later, in one of her “I hope you will feel better” responses to the unwelcome fact of illness. She said it, for some reason, not with annoyance but unusual sweetness. She even elaborated: “I can’t give you a hug, because you have a cold.” I told her that what she said was a verbal hug, that it made me happy because I love her and she loves me. She picked it right up, generalizing, exploring: “And my brother loves me, because he got up from my favorite seat.” That was all, and I haven’t heard her say the word again. But it was enough; love for her is its concrete manifestations. And she’s not wrong. “He that would do good to another must do it in Minute Particulars,” wrote William Blake.
. . .
The anecdote that must end this account is about love, and an event that told me more than I knew about where Jessy is today. Though Jessy is a happy person, it is not a happy story, but it is a good one. It comes in two parts.
Of all the young people who have loved Jessy and helped her grow, there is no one who helped her more, and loved her better, than Marilyn. Marilyn lives in Oakland now, working with the deaf; we like to think Jessy contributed to that. In 1991 there was a fire in Oakland. We pointed out the picture to Jessy when the TV news came on, making sure she knew Mal was safe. The next day, when she asked, “Should I cry if I found out Mal is dead?” we were startled but not surprised. Jessy, who must try so hard to control her crying, often asks, “Is it a good reason to cry?”
A few seasons later, she was enjoying a new acronym — one of the repeatable, manageable formalisms that help her gain a hold on the uncertainties of the world. TBA: she knows that from the college calendar — To Be Arranged, so helpful when things may not occur as scheduled. She had been planning to go visit her friend Scooch, one of the dearest of the long succession of those who’ve lived with Jessy. Scooch didn’t forget her when he graduated from Williams. As his own career carried him into the art world, he made her career his project. He commissioned a painting of his grandfather’s house. He took her to sketch it, but it was raining and she couldn’t. He was going to take her again. But he was busy and troubled, more troubled than we knew. The weeks wore on. Jessy doesn’t like to wait, but she can handle it with TBA; TBA makes her smile.
Then comes the telephone call I can still hardly believe. Scooch is dead.
Shall we tell Jessy? We decide we must; she’ll have to know sometime. She doesn’t say anything, but goes to her room. I don’t know why I don’t follow her. I guess my own emotions are too raw. I can’t bear to hear what she might say. The next day she tells me she “cried silently”; that’s how she’s supposed to cry at work, if she must cry, and certainly I didn’t hear her. She asks some questions about what she’s calling “the death.” They are factual, neutral; they are at least endurable. She doesn’t want to go with us to the funeral, and we don’t press her.
We’ll have a memorial gathering, it’s decided, just his closest friends, here at the island he loved. We’ll plant a flowering bush. Jessy will be with us. They all know about her. So she won’t get bored or impatient, I tell her what’s going to happen; we’ll dig the hole, plant the bush, and stand about it and remember Scooch. Anybody who wants to can say something.
I consider feeding her something appropriate to say, but decide against it. The rest of us speak what we feel, then are silent.
Minutes pass. And then Jessy begins to speak. I paraphrase; it was not a time for note-taking. Quietly, factually, she tells the things Scooch did for her, that he organized her first one-man show, that he got her a commission to paint the National Arts Club on Gramercy Park, that he took her to sketch the Flatiron Building and the beautiful church, that he took her to New Jersey to sketch his grandpa’s beautiful house but she couldn’t because it was raining and even the photographs weren’t good, that they were going to go back but it was TBA. In her tone was neither the cheerfulness none of us could have borne, nor autistic desolation, but quiet sadness.
Happiness isn’t everything. Jessy knows, I think, in her own concrete way, that her friend did those things for her because he loved her. He loved her innocence, her pure transparency; he saw it in her paintings. He loved the fact that words like “innocence” mean nothing to her; that transparency to her is only a property of glass. He loved her, he made her happy, she won’t see him again. And that is a good reason to cry.
Courtesy of The Viewing Room, New York City
The Great Stained Glass Doors in Spring at Dawn, #10, 5/1/89.
Courtesy of The Viewing Room, New York City
St. Paul’s and St. Andrew’s Methodist Church and the Migraine Type Lightning and the Elves, 10/17/98.
Courtesy of The Viewing Room, New York City
George Washington Bridge with the Light Pillar Reflections, 2/1/99.
Courtesy of The Viewing Room, New York City
The Flatiron Building with the Rosy Light and the Pinkish Lightning, 9/26/99.
With characteristic concentration, Jessy checks the accuracy of her painting against a photographed detail.
Jessy at work in the Williams College mailroom.
Making salad as her brother watches. In the background, some of Jessy’s greeting cards.
Mother and daughter talking together ...and reading together.
Jessy and her father spot something in the sky.
Hanging out the wash. Note the muscular tension in hand and arm. Jessy does nothing by halves.
Sister, brother, and three summer housemates celebrate Jessy’s birthday.
In the midst of family picture-taking, Jessy “snaps,” so suddenly that father, mother, sister, brother, and brother-in-law are still smiling. Jessy likes this picture.
Happy and at ease in the T-shirt her brother gave her, Jessy displays the phases of the moon.
Afterword
Jessy cannot tell her story for herself. Though she can speak nothing but truth and her memory is unerring, I must tell it for her, today as when she was eight years old. She has learned to read, but she will never read it. Once I was naive enough to think she might; when I wrote that account of her first eight years I changed her name to Elly so she need never be embarrassed. I know now how effortful is her reading, how partial her understanding, how questionable her embarrassment. I know too that she’d never read such a story even if she could, or understand why it might be worth the telling. So I can tell it freely, in its continuing strangeness and its increasing, precious ordinariness, as Jessy enters, more and more fully, yet never entirely, the world in which we live, all of us, together.
APPENDIX I Jessy’s Descriptions of Some of Her Paintings
Jessy began writing descriptions of her paintings in 1980, the year she finished school, as a way of maintaining and extending her hard-won writing skills. The first descriptions depended heavily on prompts and suggestions. Gradually she learned more and more about what a viewer might need to be told; still, it was some years before she wrote one independently. She has written her descriptions independently ever since. Though she writes a draft in pencil and asks me to look it over, only occasionally do I suggest an addition or revision in the interests of clarity. These examples are her descriptions of the paintings reproduced in color in this book.
APPENDIX II Definitions
DSM IV Definition of Autism
These are the American Psychiatric Association’s diagnostic criteria for Autistic Disorder, as laid out in the Diagnostic and Statistical Manual of Mental Disorders, fourth ed. (Washington, D.C.: American Psychiatric Association, 1994), pages 70–71 and 77–78.
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): qualitative impairment in social interaction, as manifested by at least two of the following: marked
impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of social or emotional reciprocity
qualitative impairments in communication, as manifested by at least one of the following: delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
stereotyped and repetitive use of language or idiosyncratic language
lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
Exiting Nirvana Page 18
