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Making humanitarian decisions

Dignity for all means dignity for the disabled

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Making humanitarian decisions
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The New York Times published a recent article exposing the fact that, despite government bans, some disabled European women may still be subjected to forced sterilization. Any possibility of human rights violations should concern us all. However, this press story ignores the complex relationship behind this issue and between profoundly disabled women and their caretakers. Furthermore, the report fails to consider how consent applies to severely disabled people. Meanwhile, more ominous threats facing disabled people go unquestioned.

The Times correctly highlights the dark history of forced sterilization among disabled populations, unjustly practiced as a matter of routine medical care until the 1960s and beyond. This story focuses on Iceland in particular, where forced sterilization, defined as tubal ligation for women, has been illegal since 2019. However, the 2019 law does not ban hysterectomies, considering them medical treatment rather than sterilization. Research shows that severity of disability correlates to rate of hysterectomy procedures for disabled women. It is unclear if these procedures are always medically necessary. Parents and caregivers of profoundly disabled women cite concerns of difficulty maintaining sanitation during menstruation as a primary motivator for seeking surgical interventions.

The Times reports that an official working with Iceland’s disabled population halted a planned hysterectomy for a profoundly disabled woman living in a care home. Anita, the disabled woman profiled, “cannot speak or comprehend information” and “moans and agitates” during her periods.

A hysterectomy would “eliminate monthly discomfort and ease the burden of caring for her,” according to the care home manager. The Icelandic official stopped the procedure, citing that Anita would lose her ability to have children should she want them. The implication is that the housing manager is threatening this woman’s human rights by considering a hysterectomy as part of her care, and is a closet eugenicist.

What should be a decision between Anita’s medical provider, parents, and caretakers, vested with the responsibility to make decisions in her best interest, is vetoed by a bureaucrat on a witch-hunt for eugenicists. He’s looking in the wrong place.

The pain Anita experiences during her periods is discounted in favor of enforcing a nonsensical consent paradigm.

Why does this Icelandic official wonder if Anita, who is nonverbal and cannot care for herself, may want children? The provocative nature of this question threatens her dignity. Refusing to recognize the limited capabilities of this profoundly disabled woman is sly bigotry. In this instance, a hysterectomy does not remove this woman’s agency to reproduce, but may solve what has become a clear source of pain for this woman and a burden on her caretakers.

There is a range to disability. Some disabled women are perfectly capable of offering informed consent for medical procedures. However, there is a reality to being cognitively disabled that puts into question reliance on consent as a valid framework for the basis of human interaction.

The Icelandic bureaucrat is playing a strange, shameful game. In his world, disabled people must be theoretically capable of living the same life as anyone else in order to have equal value.

My son, born blind with a complex set of birth defects, does not walk, talk, or speak. He is profoundly cognitively impaired. David is not able to consent meaningfully to any part of his life. He cannot even say when he is hungry. He is fed on a schedule, with a tube.

I am David’s consent. He is my responsibility. Noticing David’s cognitive limitations makes me more compassionate, not less. I am more able to attend to the needs of my disabled son when I am realistic about his limits—they make him extremely vulnerable. They do not determine his dignity or right to life, but instead present complex logistical issues demanding particular, nuanced care.

If David had been born female, my concerns for his vulnerability would increase. A developmentally disabled woman is more vulnerable to unwanted sexual advances: Over 80 percent of cognitively disabled women are assault victims. How could a severely cognitively impaired woman consent to sexual advances or becoming a mother? If Anita became pregnant, an act of horrific violence would have occurred.

The Icelandic bureaucrat is playing a strange, shameful game. In his world, disabled people must be theoretically capable of living the same life as anyone else in order to have equal value. The concern for consent is a cruel pantomime. In Iceland, considered a human rights leader by the Times, nearly 100 percent of children with Down syndrome are terminated in utero. The Times fails to report the stunning lack of consent that disabled children give when killed precisely because of their limits.

It’s unclear if forced sterilization procedures still haunt disabled women, according to the investigation conducted by the Times. Pitting caretakers against disabled women, instead of noticing complex interrelationships between disabled women and those who care for them, does not reveal injustice, at least in the case of Anita. It may be a humanitarian decision, not a human rights violation, to offer a particular medical intervention like a hysterectomy at the behest of parents or caregivers for a woman with profound disabilities. Blanket policies do a disservice to the disabled and their caretakers. Families and caretakers know what’s best for the disabled in their care.

Threats more ominous than hysterectomies that may ease caretaking burdens go unquestioned by the The Times. Perhaps The Times should investigate remarkable rates of abortion dependent on disability diagnosis and should turn attention to the availability of euthanasia at birth for medically complex and disabled infants. This practice, though rare, shows the dark underbelly of the West’s regard for disabled people.

The state should use its power to protect the truly vulnerable, like disabled children diagnosed in utero, and not get sidetracked on exceptional cases. I know what’s best for my son, and I would wager that most of those who lovingly chose to parent disabled children do, too.

Rachel Roth Aldhizer

Rachel Roth Aldhizer lives and writes in North Carolina, where she is an unlikely disability advocate and mom to four kids, one of whom is profoundly disabled. Her work on disability policy and a theology of suffering has appeared in numerous publications, including Public Discourse, Plough, and The American Conservative.

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