Narrating genetic disabilities: social constructs, medical treatment, and public policy.

• Author: Squier, Susan M.

ABSTRACT: The article compares three memoirs of genetically based disability: Lisa Roney's sweet, invisible body, Georgina Kleege's Sight Unseen, and Alice Wexler's Mapping Fate. The essay explores the tension between the narrow and the broad construction of disability, as demonstrated by the 1999 Supreme Court rulings on the ADA and as experienced by these three memoirists. It concludes that the approach of narrative bioethics, as exemplified by such a study of disability and illness narratives, can offer the medical and public policy community a valuable alternative perspective on genetic disability not as an incapacity, but as a set of social relations and practices.

"The theoretical bind is that deconstructing oppressive categories can neutralize the effects of real differences."

--Rosemary Garland Thompson(1)

One semester, members of the senior seminar I was teaching in the English Department were reading John Wyndham's 1954 science fiction novel, The Crysalids.(2) In that novel, the few physically intact survivors of a nuclear war embraced a harsh religion enforcing a biologically and genetically restrictive definition of humanity.

Wooden panels bearing a new Ten Commandments, governing not moral but reproductive behavior, decorate their homes:

ONLY THE IMAGE OF GOD IS MAN KEEP PURE THE STOCK OF THE LORD BLESSED IS THE NORM IN PURITY IS OUR SALVATION WATCH THOU FOR THE MUTANT! THE NORM IS THE WILL OF GOD REPRODUCTION IS THE ONLY HOLY PRODUCTION(3) Wyndham's protagonist sees these religious placards every day in his house. He learns first that they apply to his friend Sophie. Born with six toes on each foot, she is cast out by this society desperate to guard the boundaries of `the human.' Then he realizes that they also apply to himself, for this young boy hides his own difference: the `gift' of telepathy. The novel follows his journey out from his repressive society into another, freer world, where eugenic restrictions are replaced with the deliberate genetic enhancement of human abilities. As the representative of that New World puts it, "The essential quality of life is living; the essential quality of living is change; change is evolution: and we are part of it."(4)

When I asked my students for their responses to Wyndham's novel, they moved from the realm of literature to that of medicine and public policy, discussing contemporary attempts to use genetic knowledge to avoid the birth of children with genetically-based illnesses or disabilities. Michele exclaimed, "What worries me is that we don't know what we lose if we just decide to get rid of everyone with genetically-linked diseases. Where does that kind of thing end: what if we decide we only want babies with blue eyes and blonde hair?" Jamie immediately responded: "I understand what you're arguing, but I have diabetes in my family. I think if we can find a way to stop one child from suffering the pain of diabetes, we should do so."

One useful way of understanding this brief conversation from my English class is to recognize that both the meaning of such questions as well as our responses to them depend on the narratives in which they are embedded. Wyndham frames his questions about genetics and disability in relation to modern medicine's precursor narrative, religion. To the people of The Crysalids, disability is seen as the mark of evil, the sign of a broken commandment. Positioning its treatment of disability, genetics, and negative and positive eugenics in relation to a society and social policy suffused by a harsh and unforgiving religiosity, Wyndham's novel paints a vision of a postapocalyptic world in which those with genetic differences are cast out of society in order to maintain and improve the 'health' of the human race. The narrative he gives us reflects his context: the immediate aftermath of World War II, poised between the appalling memory of Nazi eugenics and the immanent horrors of teratogenic nuclear war.

Wyndham's troubling narrative context `haunts' my student's comments, too. Michele emphasizes our ignorance of how genetic disabilities articulate with other genetically linked positive physical traits, asserts the struggle to define for society and the individual the limits of acceptable genetic engineering, and only implicitly acknowledges the definitional problem posed by the term disability itself when she asks, "where does that kind of thing end?"(5) Jamie leaps from Wyndham's eugenic religion to her family's experience of diabetes without pausing to consider the variability both of diabetes itself and of its social context, giving instead a surprisingly sweeping call for genetic control of the illness as if it were untethered to individual bodies and lives.

What relevance do the responses of these students to a literary narrative have for those (physicians, lawyers, ethicists, public policy experts, disease activists and members of the disability community) charged with examining the "philosophical, medical, ethical, social and legal questions raised by advances in genetic knowledge"?(6) The responses of Michele and Jamie, influenced as they are by their recent reading, highlight the role that narrative context plays to construct our understanding of the complex issues facing us as we attempt to respond medically and socially to genetically-based disabilities. My students moved from Wyndham's novel, imbedded in a particular set of stigmatizing and traumatic narratives about genetically based disabilities, to their conversation about policy questions. As they did so, they were also forced to navigate the different issues raised by disability and genetics, two terms interwoven in a tight helix of linked assumptions that we must tease apart if we are to remain open to the full range of possible narratives we can tell, and social choices we can make, about genetically-linked disabilities. These issues include the problem of defining disability, the question of the social context for the disability, the question of the specific register in which the disability is experienced and/or expressed, the relation between possession of a gene marker or genetic defect and its expression, the specific register in which the genetic trait or marker is articulated or identified, and the social context in which genetics trumps other forms of self-description. Three narratives, one a diabetes memoir, one a disability memoir, and one a memoir of a family at risk for Huntington's disease, can help us to tease out the choices we have when we respond to these complex issues at the intersection of genetics and disability.

Narrating Disability

Narrative shapes the way we understand reality, as well as the ways we respond to it. My students' comments illustrate this: the experience of reading Wyndham's novel shaped their response to genetically-based disabilities into a dichotomy between fear of excessive genetic control and excessive alarm at the possibility of a disability.(7) Narrative also plays a crucial role in medicine, in theory and practice. As Kathryn Montgomery has established, narrative provides the foundation to the practice of medicine and the experience of illness.(8) In diagnosis, case histories, and treatment, narrative acts "both as a source of information and a means of organizing its interpretation.(9) Medical narrative "orders not just the patient's account but all the details of the physician-patient encounter, rendering it observable and intersubjective, open to critique.(10) Moreover, with the simple act of delivering a diagnosis, medical language has the power to reorder how we view both ourselves and the world.(11)

Recently disability studies scholars have begun to explore how narrative shapes our understanding of disability. While British scholars, generally sociologists and psychologists, have tended to focus on the social, material and political aspects of disability, their work has recently been both supplemented and critiqued by a group of American disability studies scholars in the humanities, who have argued that disability is defined by a narrative of incapacity and otherness, a narrative that must be challenged.(12) As Rosemary Garland Thompson puts it, "the `physically disabled' are produced by way of legal, medical, political, cultural, and literary narratives that comprise an exclusionary discourse. Constructed as the embodiment of corporeal insufficiency and deviance, the physically disabled body becomes a repository for social anxieties about ... vulnerability, control, and identity.(13) Thompson argues that we should "recast [disability] from a form of pathology to a form of ethnicity," addressed properly not in the realm of medicine, but politics.(14) Lennard Davis extends this idea, urging us to rethink not disability but normalcy. The very idea of disability grows out of the idea of the "norm, or the average," which first appears in nineteenth century Europe with the social and medical application of the new science of statistics, Davis points out, as well as in the new literary form, the novel, which celebrated the narrative of an ordinary life.(15)

Jerome Bruner, too, sees narratives as crucial to "normativity" (the celebration of a norm).(16) As Bruner observes, "Because its `tellability' as a form of discourse rests on a breach of conventional expectation, narrative is necessarily normative.(17) That is to say, a good story requires us to stay attuned both to our sense of what is normal and our ability to recognize departures from that norm. Moreover, narratives take place over time, thus producing a culture, a history, or a tradition, which they reflect. Thus (as we've seen) narratives of disability told at different times will have different sets of goals and assumptions.(18)

We can improve our understanding of both disability and normalcy, and increase our flexibility in responding to both, if we adopt the alternative perspectives of humanities' based disability studies and narrative...