I was driving Vincent somewhere, having one of those significant family conversations that breaks out when one least expects it.
“When I get tall, I want to marry Laura,” Vincent remarked.
“You’re already the tallest man in the house, Vin. How much taller do you want to get? Do you really want to get married?”
“Have a car and two kids,” he responded. “And a house. And a job–as a bartender.”
“Laura is nice. But I’m afraid that’s not going to work out. She is your niece, and I doubt her boyfriend Gary will like that idea.”
Vincent won’t marry, drive a car or get that bartending job. He wants very much to have a life like mine. Forty years old and developmentally disabled, he knows he is denied that possibility.
In real life
I thought of such conversations as I spotted the headline “Guardian sues to sterilize her niece” in Friday’s Tribune. The article was about Kirsten Johnson, 26, who suffered a brain injury years ago and today requires help with basic tasks. She is sexually active. She has had a bad reaction to the contraceptive Depo-Provera injections. She may not reliably take birth-control pills. Her guardian Vera Howse wants Johnson to undergo tubal ligation. Johnson doesn’t want this.
There is no villain here. A sensible and humane probate judge, James Riley, is trying to sort this out.
Johnson has won a delay on the forced surgery, but it appears Riley shares much of Rowse’s perspective. His 12-page opinion may rattle those who categorically reject any infringement on reproductive autonomy. You, gentle reader, might ponder how you would assume daily responsibility for an adult woman with the cognitive abilities of a preteen. Do you really believe Johnson is equipped to make sound choices about sexuality and fertility, or that she can or should manage a pregnancy? Would you stand ready to raise that child in the likely event that she proves unable? If so, do you deserve some say in her reproductive choices?
In the past
I ask these sharp rhetorical questions, but I am as ambivalent as anyone else. Until rather recently, mental institutions, hospitals and physicians sterilized people with cognitive or psychiatric disabilities. Criminals and others deemed socially undesirable–not to mention misdiagnosed people who had no disability at all by current standards–received similar treatment. Thousands of vasectomies and tubal ligations were performed against patients’ wishes. In many cases, patients were never told what was done.
The medical, institutional and legal practices that encouraged these acts reflected racial and eugenic politics that dishonored our nation. These practices were largely discredited in American law by the twin victories over the Nazis and official segregation. However, ambivalence toward mentally disabled citizens who are sexually active still lingers. Group homes are filled with Robbies, Timmies and Beckies with childhood nicknames they never outgrow. In some ways, the metaphor fits. In less obvious ways, it leads to mischief.
We are easily unnerved when cognitively disabled adults fail to act out the role of cute and docile children we have reserved for them. We persist in believing that the lucky ones do not know they are mentally disabled and that people with cognitive disabilities are happiest among people “like themselves.”
One wonders whom these bromides really serve. From early childhood, they watch TV, they see siblings join Little League and learn to drive. One can hide the prom pictures. It is impossible to shield people with cognitive disability from their central life reality. Infantilization of the cognitively disabled is especially destructive in delicate arenas of sexuality. Some adults with developmental disability bear a childlike sweetness as they play with dolls. Others wear muscle shirts or halter tops and lust after movie stars. They have adult hormones, a lifetime of memories and relationships with others. They are not children.
Society’s burdens?
The rise of modern genetics strengthened interest in strategies to minimize social burdens imposed by the disabled and to manage the human gene pool. Such interest was not confined to Nazis. Renowned 19th Century Harvard scholar Charles Eliot Norton, proposed “the painless destruction” of those with mental disabilities. In 1899, the first American report of vasectomy was titled “Surgical Treatment of Habitual Criminals.” The author noted the procedure’s utility for “chronic inebriates, imbeciles, perverts and paupers,” not to mention “racial degeneracy.” These words appeared in the Journal of the American Medical Association.
The history of involuntary sterilization was sorry enough. More ghastly was use of surgery as a chemical straitjacket when men and women with cognitive disability displayed unseemly sexual interest. Institutions deployed castration and hysterectomy to address embarrassing problems ranging from masturbation to real or imagined promiscuity. Images of the cognitively disabled as sexual predators encouraged pre-emptive action when a man was spotted enjoying the sight of a pretty woman.
This history cannot be ignored; nor should it become a blinder that prevents a kind but unsentimental appraisal of the case at hand. Riley must decide how best to help Kirsten Johnson and her family. He must engage the medical ethics of operating on a patient against her will. He must evaluate the ethics, skill and imagination of the people and agencies trying to regulate Johnson’s sexual life and to prevent her from becoming pregnant. He must provide a public account of whether and why this case differs from those of darker times, in which grossly unethical practices were perpetrated against the disabled with judicial approval.
Even voluntary sterilization is a serious step.
Searching for answers
Riley has ordered a delay while doctors search for less permanent and invasive strategies of contraception. I hope they find one, even if the only option is a visiting nurse administering birth-control pills every morning. Involuntary sterilization is a drastic step. In the strongest possible way, it tells everyone, not least Kirsten Johnson herself, that she is incapable of making her own decisions. It says that the prospect of her pregnancy is so dire that a judge, her guardian and her doctor are willing to operate against her will to prevent it. I am not yet convinced that this step must be taken.
This case does bring one consolation: the moral seriousness with which it is being handled and discussed. Over the past 40 years, America has enlarged its heart to embrace citizens with cognitive disabilities. We have made a different world, one in which a judge can credibly say that his decision will be based on Kirsten Johnson’s well-being rather than any presumed social costs or even on the perceived needs of her caregivers. Given our history, this is no small achievement.
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Harold Pollack is an associate professor in the school of social service administration at the University of Chicago.
