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Bioethics as if relationships matter.

In 1983, a drunk driver struck Sharon Kowalski's car in rural Minnesota, killing her niece and critically injuring her nephew. She herself suffered serious injuries, including permanent brain damage. A battle for visitation rights and guardianship promptly ensued. Ms. Kowalski's parents locked horns with Karen Thompson, who was Kowalski's domestic partner, as we now say. It turns out that Kowalski had not told her family about being in this same-sex relationship. That task fell to Thompson, and the Kowalski family was incredulous, to say the least. Twenty years on, Casey Chase has told the story, in the Sharon Kowalski Case, of the eight-year battle for guardianship that ought to be better known in bioethics than it is. As Chase notes, protracted legal struggles over people with traumatic brain injuries are rare indeed. On the contrary, some people find themselves unable to adjust to relationships changed by disabling conditions, and they sometimes leave their spouses, partners, family members, and friends. Against an entrenched set of expectations that the biological family alone should decide where Sharon would live and with what kind of treatment, Karen Thompson, a professor of physical education at a Minnesota state university, took a different view. She believed Sharon would fare far better both medically and socially under her care. Before it was all over, she had to embrace her own sexuality fully and publicly, resolve religious dissonance between her beliefs and her identity, and shed political views tending toward Reaganism. In Minnesota at the time of the accident, homosexuality was a crime, and the law had no precedents for recognizing same-sex partners as surrogate decisionmakers or guardians. At about the same time elsewhere around the country, an emerging epidemic put people with AIDS in similar situations, as some biological families prevented the partners of hospitalized and dying gay men from seeing them. Karen Thompson met unrelenting family resistance, including suspicion that she would sexually abuse her brain-injured partner, and she finally went public to gain the moral and financial support necessary to file one ineffectual and demoralizing suit after another. One court found that she had violated privacy rights by making Kowalski's relationship public--she had "outed" her, to put it in the vernacular--and this violation counted as a reason to deny her guardianship. Only her obstinate perseverance and the collapse of the family's will to fight eventually brought the courts around to Thompson's point of view. Powers-of-attorney for health care go a long way toward protecting against unwanted disruptions of relationships when disability strikes. But they do so, of course, only when people take specific legal steps to put them in place. In the early 1980s, in Minnesota, Thompson and Kowalski took no such steps for themselves, believing in the protection of their own discretion. The closet does offer some protection, but it undermines other kinds of protection that same-sex couples need. Homosexual men and women lack the social nets others depend on when trouble strikes. To be sure, not all homosexual men and women face the problems known to Thompson and Kowalski. Many gay and lesbian couples enjoy lives uncomplicated by social homophobia. Many people know, for example, a male or female couple living out some version of happily-ever-after. …