Perfect Union, Imperfect Family

This week the New York Times magazine published a long article on Tatiana and Krista Hogan, 4-year-old craniopagus twins, conjoined at the head and sharing a neural bridge that connects the two brains at the thalami. The author takes the girls' compelling story as an occasion to explore notions of selfhood and consciousness. Tatiana and Krista appear to share some sensory information across their neural connection, seemingly able to see and feel through the other's eyes and skin. Whether or not this is the case—and nobody really knows, perhaps not even the girls themselves—there is no doubt that these precious sisters can be understood as a kind of test case for notions of identity, consciousness, and the human condition that have shaped Western society since the Enlightenment.

The socio-neural aspect of Tatiana and Krista's experience is interesting for me in particular, given my fascination with questions of selfhood and will to which I subject readers frequently in this column. But this time it was another question that caught my interest, one that the piece did not dwell on but did gesture toward: the question of how the girls' non-traditional, somewhat haphazard family life has influenced their experience of disability, if that's an appropriate category for their conjoined status. The author writes:

Now 25, [the girls' mother Felicia Simms] is a mother of five children: Rosa, 8; Christopher, 6; Tatiana and Krista; and Shaylee, who is 3, born a year and a half after the twins. They live together with their maternal grandparents, three cousins, an aunt and uncle and [the girls' father] Hogan, who moved in with the family last year. When I met them, they resided in a tract house that had been subdivided into many rooms for senior living before the Hogan-McKay clan arrived. The family relies mostly on public assistance. Dinner sometimes seems to make it on the table only by some last-minute stroke of luck or resourcefulness.

Simms has always appreciated what she characterizes as her mother's easygoing ways. It was Louise who paid for her first facial piercing, at age 12, and who accepted the news easily when she learned her daughter was pregnant three years later. "We were never normal," Simms says, and "that was O.K." She thinks that in some ways it was easier for her family to accept the idea of conjoined twins than it might have been for a family that was more conventional. They did not have to reinvent their sense of themselves, the image they presented to the world. "In my house growing up, everything didn't have to be perfect," she said. "I never had to be like everybody else, look like everybody else."

Krista and Tatiana's family life reads something like a catalog of social conservative nightmares: a teenage, unmarried, welfare-dependent mother, a mostly-absent father, substance abuse, poverty, an unstable cast of extended family members moving in and out of the home. The family is non-traditional by mid-century standards, but its multi-generational, matriarchal character is certainly not unknown to deep human history (or to sociologists of contemporary urban poverty).

Felicia Simms, the twins' mother, suggests that it is precisely the looseness of the family structure, and an attendant lowering of expectations for roles and outcomes, that made her willing to carry these unusual—monstrous, to some—infants to term, rather than aborting them. She was willing to welcome them into her free-form family because "normal" was not required. I think her point is good: traditional family structures with defined roles have more difficulty coping with members who cannot or will not, for whatever reason, play their expected part. And in blue-state North America, where, ironically, the traditional family is most persistent, the expectations of normal family life are coupled with the expectations of an ever-more-competitive social meritocracy. Tatiana and Krista, with their unusual appearance, cognitive delays, and unconventional life-trajectory—whatever that may turn out to be—would "fail" on both counts. I think it's fair to say that an unwed, unemployed, tattooed Felicia Simms has offered life, love, and grace to her precious daughters that more conventional mothers would or could not.

(In defense of traditional families, which for the record I do defend, mostly, they are the most effective contemporary means of creating human and economic capital, capital which the Hogan-Simms clan lacks and which would undoubtedly aid in providing the best care and therapies for Tatiana and Krista. Some of the girls' physicians are concerned that their routine medical care and therapy is neglected.)