I came to the Brooklyn Museum to see Judy Chicago’s Dinner Party but it was the work of Judith Scott that stopped me in my tracks. I do not like sculpture much, I do not know how to feel about it. My mother had died three years before and I was thinking of her when I paused to study Scott’s fibrous lumps, the sticks and stones and shopping carts she wrapped in skeins of string. My mother loved sculpture and would wind a path inverse to mine in all the galleries we walked. Perhaps it was her absence that drew me closer to Scott’s work, to the introduction of the exhibit, which caught and held my eye.
I learned that Judith Scott was deaf and mute and had Down syndrome. She was a twin; she had been institutionalized for 35 years. She didn’t start making art until she was in her 40s, at Creative Growth, an art center for adults with disabilities. First she drew and made collage, but her mature work is all sculpture, these masses of fiber wrapped around other fiber and found objects. Many of these objects are enormous, intimidating; others are smaller, intimate. You could cradle them like a baby or dedicate them to a god.
After seeing the exhibit I found Betsy Bayha’s film about Judith Scott, Outsider. Bayha interviews the director of Creative Growth, who says of Scott, “You know, she’s had two lives. And most of us maybe wish for that, but we don’t realize in some moment of our life that this is the day that the next one begins. And I think that she was sort of given that opportunity and she seized the moment.”
I became fascinated by this idea, the idea of a rupture that is in fact a rebirth, a wholly unanticipated transformation. How is it possible? How was it possible for Scott? She had been systematically ignored and neglected in her first life, in the institution. No one worked with her or loved her. No one tried to teach her to read or communicate. Even her teeth were removed, to make her easier to feed.
When Joyce Scott found Judith and got her twin out of the institution, this was not the beginning of her second life. Judith Scott didn’t walk out of those doors a genius. It took two years of preparation, two years of sitting in Creative Growth and painting sheets of paper a single color. One side brown, the other side brown. One side green, the other side green. It took Joyce Scott’s indefatigable faith and material support to get her sister into Creative Growth and keep her there when she seemed to care little for the work and others were clamoring to take her place. The moment of becoming an artist, when it came, was not a lightning flash but a slow tide that overspilled her world into ours.
I studied Scott’s two lives because the artistic one was so unlikely. I needed to understand its structures because I was trying to build my own.
A few years after I discovered Judith Scott I started wanting desperately to have a baby. There are many ways to be a parent but this was the version I wanted: an infant born from my body. My desire went nowhere. First there was waiting while my husband settled into his job and later twenties, then the year of sex on a schedule. “Surely that part was fun!” people like to say. It was fun for the first couple days of every month, then it was exhausting. My hips and back and upper arms cramped with repetitive strain, but this was easy compared to the pressure to remain cheerful, connected, aroused. And yet it was all for nothing, when we learned that my Fallopian tubes were blocked. Blocked for no apparent reason. Just useless.
We moved on to IVF, which came with its own revelations. I learned that I’m a carrier for Fragile X, which means that my child could develop Fragile X Syndrome. FXS isn’t life threatening. It causes intellectual disability (mild to moderate to severe) and neurodivergence like ADHD and Autism. Now my husband and I have to decide whether to exclude embryos with this X chromosome, just as we had to decide whether to exclude those with Down’s.
When it comes to Down Syndrome and other chromosomal abnormalities, there are two sides to the decision: our lives after birth, and the chances of having a live birth at all, which decrease the more chromosomally abnormal an embryo is. An embryo with my divergent X chromosome, on the other hand, has an equal chance of implanting and surviving to term, and so the decision about Fragile X is starker: do we want a disabled child? Do we want to allow the possibility or foreclose it?
Before I walked into the Brooklyn Museum, before I learned about Judith Scott and experienced her work, I would have had fewer doubts about this decision. In my family, intellect was prized above all other things. We were readers, thinkers, writers, and engineers. When in adolescence I became aware of the debate around abortion and disability, especially Down Syndrome, I was firmly on the side of choice. No one should have to care for a disabled child, I thought.
But when I encountered Judith Scott I realized that care and labor were only one part of this debate. The debate was also about value—what a life, especially an intellectually disabled life—is worth. Because I was raised to value art as well as verbal craft, my mind balked at the idea of a world without Judith Scott. Her life suddenly had value to me.
When a disabled person is extraordinary, it’s easy for non-disabled people to write them off as unique. Exceptionalism only confirms the non-disabled person’s sense of what normal is. Perhaps this is how other people see Judith Scott: a disabled artist who proves the general worthlessness of disabled lives, but on me she had a different effect. Few people—disabled or non-disabled—are geniuses. But she helped me to see that the value of a human life cannot be calculated. It cannot be foreseen.
By the time my mother was diagnosed with the cancer that would kill her, she’d lost most of her language. She had been ill for a year with what her doctors thought was rheumatoid arthritis: a stunning pain in the legs, a slow cognitive decline. But after months without improvement a specialist in Rochester confirmed our suspicions; whatever this was, it wasn’t RA. The next day she was scheduled for an MRI. That morning she didn’t wake up.
When my father called I was shopping for textbooks with my closest friends. We were at a crossroads of sorts, a swarm of students thrumming in the autumn air. I have to admit, in retrospect, how lucky I was to be with them. On the phone with my father I myself began to collapse, losing the power to walk and speak and make decisions. One friend got me home. Another booked a plane ticket. A third packed my bags. A fourth fed the cat.
I arrived late into Ithaca and the hospital halls were quiet, the lights in my mother’s room dimmed. Was she still in a coma or only sleeping? We had received the diagnosis by then, we knew that lung cancer had metastasized to her liver and brain, but she knew nothing yet.
She woke up, she wanted to say something but a tube was in the way and her lips were cracking and bleeding. It seemed essential that she be allowed to speak. Our eyes locked, blue on blue, but only urgency and desperation passed between them.
At last I wrote out letters and had her point: the silent alphabet I saw in The Diving Bell and the Butterfly a few years before. I used a scrap of butcher paper from my backpack, a reminder of the class I had just taught. Long minutes passed before I could assemble her message: “I never knew.” Later, she didn’t remember any of this. I never learned what she never knew.
Out of the hospital, my mother decided she wanted a short course of radiation to buy time for writing. She had been a poet for my whole life and longer, receiving an MFA at Cornell just before I was born. But writing and publishing had taken a backseat since then; she was supposed to devote herself to poetry again in retirement.
I’m not sure what happened after her diagnosis and its terrible prognosis. She tried to write, but said “the words weren’t there.” Instead, whenever I came home I found her putting things in order. That’s what she wanted to do, or needed to do: distribute her belongings, receive last visitors, choose a grave.
“The words weren’t there.” I wonder what would have happened if she had allowed her brain to find a new language or a new form. She was seeing things, experiencing things that amazed her, but there is no record except my own fading memory. One day I caught her laughing in an empty room. “I’m talking to the other beings,” she said.
Sometime in the year before this, when my mother was dying but before we knew she was dying, she told me that I should never marry or have children. Not because I would make a bad parent or a bad partner but because it would stop my own life and inaugurate another, lesser one. In going against this advice I have also been searching for an argument to combat it, a version of my mother’s life in which both of us are able to flourish.
To have a child is to be disabled by it. I think that is what my mother was trying to say. Having me was something she needed to do, but there was a cost she didn’t anticipate, a cost to her writing life. The mechanics of this loss weren’t straightforward. There were many factors at play: my father’s role in the household, my mother’s other ambitions, the unique emotional drain of parenting without having had functional parents of her own. But the way she framed this was, child instead of art. And also—I have birthed an artist. Now become one.
In Entwined, Joyce Scott’s memoir, she reflects on the forces that drove her in her forties to find her sister, get her out of the institution, and become her legal guardian. In the years before this decision she discovered a “pattern of endlessly overcommitting” that masked the loss at the center of her life, the loss of her twin: “I am conscious of remaining incomplete, of missing half of myself, like a solitary bookend that can support nothing.”
I have the same pattern of overcommitment, of devoting myself to people and creatures in pain. There are the parrots I volunteer to rehabilitate but eventually adopt, the students I check in with casually and then mentor indefinitely. This is a symptom of anxiety and a cover for my grief over my mother’s death and also an homage to her, another woman whose anxiety and grief drove her own pattern of overcommitment.
Entwined is a story of Joyce’s longing for Judy, a longing that would propel Joyce to become Judy’s legal guardian more than thirty years after their separation. In Joyce’s telling, recommitting to Judy is the answer to grief, to emptiness, to Joyce’s “doubled-up life”: “the busyness of a single mother working as a nurse, often both nights and days, raising two daughters alone, owning a house shared with tenants…” But Judy of course causes that busyness to triple, quadruple. I wonder if Joyce Scott’s drive to become Judy’s guardian was so strong because it both answered the loss of her sister and reproduced the pattern created to mask that loss.
In her memoir, Joyce doesn’t reflect on what her life would have been without her children or in a different, less caring profession. She seems sure that she made the right decisions in her self-devotion, just as she is sure of bringing Judy into her home. But I wonder what Joyce Scott’s writing life could have been if she had left her sister institutionalized, or remained single, childless. What would she have created instead?
In Sarah Ruhl’s book about playwriting and parenting, 100 Essays I Don’t Have Time to Write, she says that when she first had twins “it felt as though my children were annihilating me … and finally I came to the thought, All right then, annihilate me; that other self was a fiction anyhow.” I like this idea that no self is the real self. But I wonder if it’s the act of choosing a new life—or being thrust into it—that renders the old one fictitious, and therefore forgettable.
As I think about the embryos to come, if any come, and how to choose among them, I start to dream about the abortions my mother had before she decided to have me. I dream that I have a sister somewhere, a hidden twin.
In the dream we are in utero surrounded by other fetuses. We are aware of each other, all of us aware of the others, but my twin and I have the tightest bond. One by one our siblings die around us, terminated by our unseen mother. The anguish of that! The lights going out in the darkness! We come into the world the sole survivors of a terrible disaster.
The dream speeds forward to adolescence. My sister and I are separated, she has been hidden away. She is a troubled child, crouched in darkness. My mother is ashamed of her and by the time I am an adult all memory of this twin has been erased from our home.
I grow older, I start to recover these memories. I start to look for my sister, to crave her again. But I am also afraid of her, of her difference. It is not clear that we will be friends.
The dream is frightening, horrifying, but I know that it also embodies a wish. I wish for this sister, especially now that my mother is gone. I want another half to remember her by. Someone the same as me but different. A way to know myself and know the world differently.
In the wake of this dream I fantasize about what my mother’s life could have been without me. If she had married my father but remained childless, as they had originally planned. If the desire to rewrite her own childhood hadn’t compelled her into motherhood.
In this other life she is just as driven to help others. She is still a nurse and still a resentful runner of the household. She tells people that her poetry is self-indulgent. She doesn’t share her publications when she gets them. She is at war with herself always.
And yet. And yet there are long stretches of days—evenings I imagine, days off from work, weeks when my father is travelling for business—and in these gardens her poetry starts to grow. She publishes the book she left unfinished when she died. She finds a community of other writers, people who will counter her narrative of worthlessness.
I am aware that this daydream is also a fantasy of my own other life, the life I am giving up by deciding to become a parent. I value my work as my mother never valued hers. But like her I am driven to entangle myself with others, even as I feel time and energy for writing leaking away. I do not think I am cowardly. I think I am too curious. The life alone is already known to me and though I burn with the fire to fuel my work it can’t fully light my dark interior. I can’t stay with it for long.
My first round of IVF yields ten eggs of which eight are mature and five fertilize. Three reach the fifth day of growth and can be tested. Two of these are chromosomally “balanced.” We move on to testing for the Fragile-X linked chromosome. There is a 75% chance of getting what we want: one embryo without my X chromosome.
When I think about choosing among these embryos—or choosing none of them—I would like to say that what I am most afraid of is immorality, of destroying difference in the world to make my life easier. I reach out to friends in disability studies to discuss the hard questions, the social implications: a world in which there are no Autistic people, for example, and all the richness they bring.
But I find that the moral questions are intellectual, academic. I feel them briefly in my body like a flu, an intense but passing illness. As they drift from my mind the true fear, the core terror, is allowed to surface. I am terrified of excluding these embryos not because it will make me a bad person but because it might make me childless. I am afraid of depriving myself—myself—of biological parenthood. The grief of not having a child looks like death, my death, my mother’s death all over again. I have survived the death of my self before. I can do it again. But what I wouldn’t give to avoid that fraudulent resurrection, the faded half-life that comes after grief.
We test two embryos for my Fragile X-linked chromosome, XY and XX, a boy and a girl, whatever that might mean to them. The longer I live in my body the less I identify with its given gender, with any gender, and yet the XX embryo is the one I can’t stop thinking about: image of my mother and my lost sister, missing twin, heir of my maternal line.
The XX embryo is deemed “at risk” which means it could be a carrier like me, or have moderate symptoms of FXS, or severe symptoms—there’s no way to tell. The XY embryo is unaffected by my X chromosome and “recommended” for transfer.
I look at the reports on these embryos. I try to imagine their two lives: those they could lead and those I would lead with them, the lives I would leave behind. My mother is gone and so is the sister I never had. I have left the writing life of a single person. I have lost the conception and pregnancy of my dreams. In the globe of each embryo I see a world, a multitude of worlds. Layers of string I could spend the rest of my life unravelling.
