You have /5 articles left.
Sign up for a free account or log in.

A few months ago, I attended a forum on the politics and economics of disability. My impression was that the audience consisted mainly of people with disabilities -- an impression that has changed with time. Whatever the proportions may actually have been, my judgment was probably skewed by self-consciousness, and not just the usual awkwardness of finding a seat after the presentation was well underway. It had taken root long before I got to the room.

"Able-bodied" and "disabled" are categories that function in society at large as necessary and common-sensical, and they are weighted such that the first is posited as normal and predominant, and as such effectively invisible, while the other is an exceptional condition, making it, oddly, both conspicuous and ignorable as circumstances may dictate. With hindsight I am not at all sure more people at the talk had wheelchairs or canes than were present at other talks I attended at the conference. Besides, not every disability involves such a clear marker.

But since disability itself was the topic of the hour, the fact that I did not need any such assistance registered much more sharply than it ordinarily would. Eyeglasses didn't count. Experiential norms prevailing outside the room were not taken for granted, as became even more clear following the speaker's presentation. A number of people pointed out that no American Sign Language interpreter was present. Somehow I had not noticed. Not noticing certain things is a luxury you generally aren't even aware of enjoying.

As binary oppositions go, "able-bodied/disabled" proves much less stable than it appears. It's not just that the most gifted athlete or graceful dancer may be one bullet or automobile accident away from an irrevocable change in status. As mentioned, wearing glasses allows me to function as fully able, but they are a prosthesis for the lenses in my eyes, quite as much a wheelchair is for a paraplegic's legs. And the process of aging has a way of erasing the bright line between ability and its malfunctions. Time is not on the side of the able-bodied. With aging, the binary opposition runs right through the brain, so to speak. Jokes about "having a senior moment" acknowledge (and deflect) this reality. Our long-term command of the powers of attention and memory is contingent at best.

One of the things the reader can take away from George Estreich's Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves (MIT Press) is a heightened sense of how damaging it can be to think of "the disabled" in terms of a distinction between "us" and "them." An instructor in writing at Oregon State University, Estreich is also the author of The Shape of an Eye: A Memoir, about raising his daughter Laura, who has Down syndrome. I haven't read it, but she reappears throughout Fables and Futures without that making the book a memoir, exactly.

"Writing about Laura has its complications," Estreich notes. "For each sentence, I could add a page of narrative caveats, a fine print to govern the legal interpretation of anecdote: 'This positive description is not meant to inspire … Though the author has strong opinions on a range of social issues, he declines to weaponize his daughter in their service. Laura is not an example in an argument … She is a person, and by describing her the author intends to suggest what she is like and raise questions about the world she enters. This work is related to, yet different from, his work as a parent, which is to help her find, in every sense, her place.' Behind these caveats is the wish to control interpretation, and behind that vain hope is, in no particular order, a writer's ego, a father's protectiveness, and a deep familiarity with the average Internet comment section."

That is quite a few knives to juggle at the same time. And the list does not even include the issue on which Estreich concentrates here: the advancing biotechnology of prenatal testing and genetic editing. The book is a sort of intellectual travelogue, the author thinking his way across a landscape that is changing faster than it can be captured in concepts. When he attends an event in New Orleans that doubles as a professional conference for genetic counselors and a trade show for biotech companies, he notes, "The uneasy tension between old and new brought on by biotech: the more artifice the project requires, the more its advocates retail images of naturalness and purity." The quest to render the woolly mammoth "de-extinct" coexists with strong an implicit and largely unacknowledged strain of 21st-century eugenics.

Given the murderous consequences of one especially vehement form, we tend to think of eugenics as prone to goose-stepping. But a tangent from the memory of his daughter's participation in a county fair leads Estreich back to the era of Better Babies and Fitter Families contests at Midwestern state fairs, in which whole families underwent exams and answered questionnaires to determine which was freest from inherited defects. "If human improvement is on stage," he writes, "disability-based metaphors are usually skulking in the wings."

The author's worry -- which is also a father's worry -- concerns the possible cascade of effects of "our rapidly increasing, fine-grained knowledge of genetic variation." A culture that takes technological development as inevitable is dangerous enough, to itself and others, without having the option of decision making that "invoke[s] abnormality, a word capacious enough to hold everything and everyone considered different and undesirable." Estreich is uncommonly adept at presenting both experiences and ideas in layers, without the structure itself becoming either unmanageable or distracting. Anyone who reads it should expect the wheels in their head to keep spinning for a while afterward.

Next Story

Written By

More from Intellectual Affairs