Judith and Joyce Scott

Birth and Rebirth

By Joyce Scott

From the beginning Judy and I were surrounded by the waters of life and lived in them together. We were tightly bound by our mother's stretched abdomen. We were enclosed, held safe together. When one of us shifted a leg or turned a head, the other responded and moved as well. Movements were small and necessarily interrelated in our warm, wet world. At our birth, water gushed around us as we entered the light, born within minutes of each other; a surprise to the same mother, the same father, and surely a shock to the same three older brothers.

At some point I must have realized that Judy and I were not the same person, but I cannot recall when. I know I always felt graced by her presence and protected by the strength of our bond. Within her and surrounding her was a sense of calm, a tenderness and a capacity for forgiveness that allowed me to walk in light and swim through deep waters.

From the very beginning there were currents drawing us apart and heavy millstones of cultural judgment and rejection that weighed us down. At first we lived unaware and unafraid. In the sandbox where we played, pouring sand in each other’s hair, wiggling toes in wetness, making our leaf and stick dishes and dinners; we still felt only the innocence of our soft skin and earthy explorations. 

But the forces pulling at us and threatening us grew as we grew. No longer wrapped in the protective web of our family's ties alone, we soon joined the neighborhood. There Judy was seen as different - and to a few ignorant and fearful souls, different meant dangerous. Our next-door neighbors refused to let her in their yard. Currents growing, doors slamming shut. 

Yet, still we had our private sanctuary where other children could join us. Still we had the mulberries to mix into pies and the kittens that came every spring and grew with us. And always we had the closeness of sleep, entwined, anchored to each other and held tight by our love. We remained wrapped in the safety and certainty of each other's presence.

As days became months and months became years, a new and stronger current pulled at me as I began school, leaving Judy behind, alone with our room, our sandbox, our world of textures and trees.... and without realizing it, leaving her alone in a private world of silence.

Now her world was the texture of the earth: the feel of sand, water and leaves. A life without sound. In our room, often alone, she carefully studied the magazines our mother gave her - and then just as carefully, tore them in pieces, leaving them scattered and destroyed. She held our two dolls close together. She tore them apart. One day, I returned to find mine with her arm missing - roughly ripped off. I felt hurt and betrayed, but I sensed why. I knew that what was being taken from Judy was more than just an arm.

Without our knowledge or understanding, the currents forcing us apart had gathered strength and become a torrent impossible to resist. Judy was tested in the hope that she might qualify for the one classroom in Cincinnati for children who were "mentally retarded". She failed. Tested verbally, the examiner had omitted to notice that she was deaf and so gave Judy a damning score.

In fairness, it should be added that, incredible though may seem, no one, not even her family, ever realized that she was deaf. Her peculiar ways of not responding when she wasn't looking at us, and of wandering down the lane and "refusing" to heed our calls, were regarded as nothing more than eccentric stubbornness.

This inadequate and inaccurate test sealed Judy's fate - and mine as well. The chilling weight of existing cultural judgments against children with Down Syndrome now entered with full, devastating force into our lives. Our parents were told there were no other options but to institutionalize Judy; told that she was profoundly retarded and could never learn; never accomplish anything, and would probably never even be able to dress herself. Time has proved these predictions startlingly, wonderfully wrong!

And so it was that I awoke one morning to find coldness in the bed beside me, in the place where Judy always had slept beside me. She was gone - suddenly and absolutely. I still remember the horrible chill of that moment. I know how traumatic that dreadful separation was for me, but I can only begin to imagine what it must have been like for Judy. She not only lost me and our unique connection, she lost her family, her home, her neighborhood, her whole world. Instead she found herself lost in a circle of hell; a place devoid of all hope. 

That night, on our father's return from the State Institution at Columbus, I hid round the corner to listen. I remember hearing him say that Judy had been frightened in the elevator, had cried out and clung to him. Mother seemed to find some comfort in remembering the pretty yellow dress she had worn. He looked tired. I felt a sadness descending on our family. Deep cold waters spreading and shadows in the corners that remained.

After Judy moved to the institution, our family seemed gradually to sink under the weight of our unexpressed sorrow. Our father had a serious heart attack the following year and never recovered. I remember him in those final few years as a stranger, withdrawn, depressed, lying on the couch with his arm covering his eyes. He had been a wonderful father, loving and involved. In a sense, he died then - and again five years later.

For several years we went every month to see Judy. As we left the building with her, she would head straight for our aging yellow Pontiac. We would go for a drive. We would sit and play on the lawn with the little toys we'd brought her. Later, we’d sit on the bench together and pretend that we would not be leaving again soon. My mother and I would drive home in heavy silence.

The State Institution was a terrible place - worse than terrible - full of the awful sounds and smells of human suffering and abandonment. It still lives in my nightmares. That Judy is not haunted, that she has not been destroyed is a testament to the human spirit and most especially to hers. 
There is no doubt that institutional life has left its mark. Her habit of stealing small bits and pieces, of hoarding things, of being initially suspicious of strangers and of tending to isolate herself, these all reflect those terrible times. Her incredible ability to persevere and to sustain her focus, to hear her own inner voice, may also come from those years of crowded aloneness.

As a young adult, after two years of teaching in Columbus I moved to California, married, had a family - and divorced. I worked sometimes as a teacher, sometimes as a nurse, almost always with children with special needs. I returned to Ohio infrequently and saw Judy but rarely. Those were difficult and demanding years. During that time, through my work with an infant given a 10 percent chance of living, I became interested in the writings of Stephen Levine and attended several of his meditation retreats. His teaching and Buddhist practice resonated for me in a deep way. In 1985, after a six day retreat of mostly silent meditation, through a kind of epiphany, I returned home and found myself knowing with absolute certainty that was both possible and right for Judy to live out the rest of her life near us; for us to be together again. 

I began the long process of becoming her guardian and of bringing her from the institution [now at Gallipolis, Ohio] to live with us in California. Although, it was not easy, I never felt hesitation or doubt. Perhaps the most heartbreaking moment was when she came off the plane from Ohio, alone, and with deep, dark circles of terror around her eyes. In a final, callous gesture of institutional neglect she had inexplicably, unforgivably, been placed on the plane without an attendant, and being deaf and devoid of language, had no idea what was happening to her. 

However, there followed an extremely happy time of reunion with our family, with Judy lively and full of fun. Later, our house being small and because of long irregular work hours, she moved nearby to a Board and Care home where we could visit and continue to share our lives. It was extreme good fortune that I learned of the Creative Growth Center in Oakland at this time. Although I didn't know whether Judy had any artistic abilities, I felt strongly that everyone is creative, given a chance, and I wanted Judy to have an opportunity to explore her own abilities. I also sensed here an unusual environment that bordered on magical. There was a wonderful sense of support and creativity in the air. I felt hopeful that it would be both a healing and a productive place for Judy. 

Although the first couple of years were uncertain, once she was exposed to working in fiber, Judy began creating her own fantastic woven universe of shapes and textures. What has evolved, no one could ever have predicted, or even imagined.

I think of Judy's creations as an embodiment of her ability to survive by layering and protecting herself, and as a weaving of the complexities and tragedies of her life into a beautiful design. Her work may also embody her longing for our former oneness and her missing twin. I certainly know myself of my own longing for her, and of my feeling that a large part of myself has been missing.

I see her story and her success as a testament to the immense potential and talent in each person, talent sometimes layered, hidden, trapped, but which, like underground water finding an opening, can emerge from a dark place into light.

For deeper insights and a clearer perspective of Judy’s work, John MacGregor's strikingly beautiful book, Metamorphosis- The Fiber Art of Judith Scott provides an incomparable and compelling analysis.