Lullabies for Sophia

Abstract

Sophia was born perfect. I had six hours of untempered joy before the routine ALGO test, now widely used to screen newborns for hearing impairment, hinted at a serious problem. I remember staring at the ALGO computer monitor, waiting impatiently for it to register Sophia's brain response to sound. There was practically none. The test was performed the next day with a similar result. A team from audiology came to our hospital room to explain that Sophia's failure of the screening test may not be an indication of deafness--her ears may be blocked with amniotic fluid; she may have a bacterial infection. We should come back in two weeks to have her tested again. We did. Sophia was deaf. The excitement of having a new baby was entirely eclipsed by the fact that Sophia could not hear and might never talk. While a perceived fragility drew us closer--Sophia would not be out of our embracing arms for a moment--many parental instincts were stunted. Singing lullabies felt idiotic. Indeed, all impulses to make sound were stifled by sadness and anger before they could leave my throat. I felt grief over every sound Sophia might never hear: the wind in the trees, the crashing of ocean waves, music. Then I worried how Sophia would navigate her way in the world, how she would learn, how she would relate to others. Decisions had to be made very early about whether Sophia would get hearing aids, and whether we would pursue a path of oral communication or manual communication, or both. The complexity of the decisionmaking process was startling. The politicization of the debate about oral versus manual communication was disheartening. That I had only six hours of untempered joy at the arrival of my baby was maddening. The most striking aspect of the decisionmaking process was the fact that I did not yet know Sophia. I had to make decisions on behalf of a person whose identity, was undeclared, unknown, and unknowable. Some people in the Deaf community suggested that her deafness itself was her identity. When I told someone that we were considering an oral approach for Sophia (then just three months old), he said: Why don't you let her be who she is? I replied: Who is she? The suggestion that Sophia's identity lies in her deafness should, I thought, meet with as much opposition as the suggestion that a person's identity is reducible merely to her race or gender. How could Sophia's deafness be her identity? Is my status as a hearer my identity? Surely Sophia would have more to go by. Without a clear sense of Sophia's identity, I was yet haunted by the knowledge that whatever decisions we made would contribute to shaping her. Though many parental decisions help to shape a child's development, our decisions were not the kind that a child, with a burgeoning sense of self, could later override. If we focused exclusively on manual communication, Sophia would not learn to listen or to speak, and any later efforts she might make would be fraught with difficulties in comprehending and producing sound. If we focused exclusively on oral communication, Sophia might later learn to sign, but the Deaf community would never fully accept her. Here the politics of deafness felt suffocating. Couldn't Sophia straddle multiple communities? An intractable exclusivity seemed to exist on both sides of the cultural divide. If unable to speak, Sophia would be excluded from many opportunities in the hearing world. Yet, with aids and speech work, Sophia would be alienated from those in the Deaf community who frown on attempts to assimilate into oral culture and view such attempts as a tacit admission that the inability to hear and speak is a disability to be overcome. Faced with decisions that seemed to determine her future community membership, in addition to her cognitive and linguistic development, we felt overwhelmed by uncertainty: The option of total communication (speaking and signing together) was appealing, but there was reason to worry that Sophia, in trying to do both, might ultimately master neither. …