Fables and Futures: an excerpt
Introduction
In late March of 2001, a month after my younger daughter Laura was born, then diagnosed with Down syndrome, I drove out to the Oregon desert. Theresa, my wife, had taken Laura and her older sister Ellie back East, to visit family; I wanted some distance, a change of landscape. A broader perspective, or at least a new one. I was with a friend I’ll call Robert, the first person I told about Laura. In the weeks since Laura’s diagnosis, he’d been listening more than talking; when he spoke, he was measured, considerate. He had distance without being distant. For me and Theresa, mired in simple yet unassimilable facts—Laura’s extra chromosome, her condition, her heart defect, as yet unrepaired—Robert’s presence was as consoling as any empathetic shock.
We loaded up tents, packs, ramen noodles, and candy bars. Then we shooed the two dogs into the back of the Subaru: his dog, an expressive, jowly English pointer, and Penny, our anxious, submissive, cinnamon-colored mutt, fattened by years of food falling from high chairs. They scrabbled and slobbered and whined. We set out, calling back to them to calm down.
It felt good to be driving east, toward the usual limits of vision. We live in the Willamette Valley, a wide north–south swath of agricultural grass fields, bounded to the west by the low, softened mountains of the Coast Range and to the east by the intermittent snowy peaks of the Cascades: Mount Jefferson, Three Fingered Jack, the Three Sisters, widely spaced as punctuation for an unseen sentence. As you descend from the pass, the Douglas firs recede, replaced by ponderosa pines, then juniper, then sage; the ground, once loamy, is cindery and dry; the air smells different, rarefied, sharper. Soon it’s all fence wire, sky, and the scoured forms of hills, their cinnamons and russets knotted by sagebrush, like the back of a rug.
As the landscape emptied out, I began talking about Laura, venting, the words spilling over. I didn’t know how to think about her. I remember saying I wanted her to be Laura, my daughter, not a medical case, not an extra chromosome. I could already hear the iron doors of categories clanging shut, special needs, disabled, developmentally delayed. I didn’t want her to be the sum of her medical problems. I wanted some sliver of her life left pure. Robert mostly listened and kept his counsel. I do remember his saying that Down syndrome seemed to him part of the normal range of human variation, and that, as such, Laura might be unique and valuable not in spite of her Down syndrome, but because of it.
We arrived late, switchbacking up to the plateau where the campground was, and set up tents in the shadow of rounded hills, hurrying to feed the dogs and ourselves before dark. In the evening, we walked up the dirt road from the campsite. The dogs bounded ahead, researching invisible trails.
You could still see some orange in the west. A few bright clouds were ashing over. Then the first star was out, and the sky was all gradations of blue. But one cloud stayed, pink as the inside of a grapefruit. It was different. The other clouds were, definably, volumes, objects in the sky. A child could look up and say Car, or Horse. But this one had no shape you could name by likeness. It was a blur, a region of unfocus, a mist. It was, we thought, simply higher than the other clouds, thinnest cirrus gathering the last of a sun we had already turned away from. But as the sky darkened, the cloud’s colors grew deeper, more saturated. It seemed lit from within. We could see the light moving, rippling with soft verticals, like folds in a heavy curtain. A dark coruscation, a pulse.
It was clear that we were looking, somehow, at the aurora borealis: a rare event at this latitude, but evidently there. The cloud was not a cloud. It had been right in front of us all along, but expectation had kept us from seeing it for what it was.
***
I was trying to answer the question that disability had posed. I was doing so in a world that abounds with wrong answers, that did not even have satisfactory language with which to begin to speak.
This book explores our ongoing American conversation about human-focused biotechnology: applications able to “read” and “write” DNA, the molecule of which genes are composed. If I begin with a story about Laura, it’s not only because her condition is genetic; it’s because stories about disability are central to that conversation. Even as I drove out to the desert, I was beginning to understand the shape of the standard story, to understand how much of it I had already inhaled and made my own. I was discovering the fables I already believed. In the years afterward, as I worked on a book about Laura, I learned and relearned the obvious but vital truth that narrative questions are also political ones: who gets a story, who gets to tell it, whose stories are credited, and the limits of stories themselves.
In March of 2001, I was submerged in shock, but my approximate understanding of DNA and chromosomes had improved. DNA is the long, double-stranded molecule necessary for life. It contains the instructions to build, maintain, and replicate an organism. DNA’s structure, the familiar double helix, is unchanging, but the sequence of its paired component bases—adenine, thymine, guanine, and cytosine, abbreviated A, T, G, and C—is variable: differences in life-forms (plane trees, rhinoceroses, E. coli, semi-employed writers) begin as differences in sequence. Significant stretches of sequence are called genes, which mainly encode the complex structures called proteins, on which life depends. Humans have between 20,000 and 25,000 genes, though these constitute only a fraction of the total DNA we inherit, which is called the genome. In humans, the long thread of the genome is bundled into chromosomes. Most of us have forty-six: twenty-two pairs of autosomes, plus the two sex chromosomes, XX for women, XY for men. People with Down syndrome have forty-seven, with an extra copy of the twenty-first chromosome, the smallest, containing around two hundred genes (trisomy 21: three copies of chromosome 21). Laura’s apparent differences from us, it turned out, sprang from an abundance of similarity. These microscopic facts were joined to macroscopic mysteries, including Laura’s appearance, her heart defect, and the loss of what I understood to be an ordinary life.
I did not even know how to think about Laura, she was both my actual daughter and a vague radiance in the Western sky—a phenomenon I could see but not name—and so I could barely begin to think about intellectual disability and society, let alone the complications of prenatal testing, human gene editing, virtual children, de-extincted woolly mammoths, or semi- synthetic cells. But as the strangeness faded, as Laura survived her heart surgery and a feeding disorder and began to thrive and emerge from the facts and fears in which I had cocooned her, I came to understand that the chromosome mattered less than its context. Our lives were entangled in something larger, in a long American conversation about genes and disability and difference and family and normality and belonging. That conversation is shaped, in part, by an awareness of biotechnology’s capabilities. This was evident early in Laura’s life, when every discussion of her arrival was marked by a question, spoken or unspoken, about whether we had tested. But questions about biotechnology are rapidly becoming questions for everyone.
We live at a unique time in history: we are able, as never before, to translate genetic information into digital information and back again. This means that we are increasingly able to predict the qualities of future people—and to alter them, should we choose to, in inheritable ways. Therefore, the technology implies necessary questions about what kinds of people we value, and about how the most vulnerable will be affected. Though many are thinking and talking about these subjects, the popular conversation is still tiny, considering the species-altering changes on offer. That’s why the conversation matters so much, and because that conversation is pervaded by narrative, the stories matter too.
***
Every new technology is accompanied by a persuasive story, one that minimizes downsides and promises enormous benefits. I use the term “story” loosely: in our fragmented, digital time, the narrative is more often implied, composed of images as well as words. However, beneath the fables attached to any one application—the perfect and perfectly content families in ads for next-generation prenatal tests, the pristine landscapes with mammoths awakened from extinction’s slumber—is a progress narrative, in which science and technology bring us a better world. Too often that narrative frames disability as a cost. I’m deeply pro-science, and I’m fond of advanced technology—from the computer on which I type these words to the ECMO machine that kept Laura alive while her heart was repaired. But if our new biotechnologies are to help us, we must see them clearly—and we must also recognize that, as currently constituted, they reflect and amplify our misconceptions about disability and our devotion to the often-destructive idea of “normal.”
In the conversation about human-focused biotechnology, people with disabilities are mostly invisible; when present, they exist as emblems more than individuals, as occasions for ethical debate, or as examples of outcomes to avoid. Their identities are occluded by diagnosis or stereotype, their interiority goes unacknowledged and unremarked, their emotions are simplified by design, and they are rarely consulted. The paradox is that whether as absence or distortion, they are essential. As a rhetorical device, disability offers the rationale for the technology’s development and use: that is, a central promise of the technology is that disability will be repaired or prevented.
This is not to say that disability is always a “good” thing being portrayed as “bad,” but rather that disability is complex and flattened into simplicity. Key to that oversimplification is the view that “disability” is something purely physical, something comprehensible through science and medicine and ameliorable, or preventable, through technology. This approach— in the shorthand of scholars in disability studies, the “medical model of disability”—downplays the role of social context in creating disability’s meaning, blurs key distinctions between disability and disease, and omits the perspectives of many with disabilities. For that reason, I have tried to include some of those voices here.