IJFAB Blog

In 2003, Harriet McBryde Johnson famously engaged Peter Singer to discuss his views on disabled persons. Like so many before him–utilitarians or not–Singer argued that the lives of disabled persons involved more suffering and less joy than non-disabled persons, and he focused on the costs of their care rather than the joys of their own lives and the joy they bring others. As Johnson put it in her piece “Unspeakable Conversations” in the New York Times, “To Singer, it’s pretty simple: disability makes a person ‘worse off.'”

This view is not uncommon amongst clinicians and bioethicists who play a role in making quality of life determinations for disabled patients, and who use those in making determinations about access to care and especially when care is “futile.” A new study in Health Affairs confirms precisely this. The authors, Iezzoni et al., begin by noting that more than 61 million Americans have disabilities (about 1/5 of the population), and that they experience health care disparities. One possible cause might be physicians’ perceptions of people with disability, and so Iezzoni et al. set out to measure these perceptions. In a survey of 714 currently practicing U.S. physicians, 82% reported that “people with significant disability have worse quality of life than nondisabled people.” A majority of clinicians surveyed realized at some level that they were not well-prepared to provide the same quality of care to disabled patients as to non-disabled patients: only 40.7% of them felt “very confident” about their ability to do so, while 57% “strongly agreed” they welcome such patients into their practices. About 1 in 5 of those surveyed acknowledged that the health care system often treats these patients unfairly.

Quality of life judgments made by physicians are no less suspect than those made by Singer, if we extend Johnson’s analysis. She responds to these judgments in “Unspeakable Conversations”:

Are we ”worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.

Pressing me to admit a negative correlation between disability and happiness, Singer presents a situation: imagine a disabled child on the beach, watching the other children play…

I respond: ”As a little girl playing on the beach, I was already aware that some people felt sorry for me, that I wasn’t frolicking with the same level of frenzy as other children. This annoyed me, and still does.” I take the time to write a detailed description of how I, in fact, had fun playing on the beach, without the need of standing, walking or running….

[I] invoke the muck and mess and undeniable reality of disabled lives well lived.

Argentina’s Congress has legalised abortions up to the 14th week of pregnancy, with the Senate approving the measure by a vote of 38-29. Prior to the vote, abortion was only allowed in the case of rape or a threat to the mother’s health. This is a ground-breaking legislation as Latin America has some of the world’s strictest termination laws, due at least partially to the strong influence of the Catholic Church in the region. The bill was supported by centre-left President Alberto Fernández.

According to the BBC, pro-choice activists hope the legalization of abortion in Argentina, which is one of the largest and most influential countries in the region, will inspire other Latin American countries to follow suit. Currently, abortions are completely banned in El Salvador, Nicaragua and the Dominican Republic and are only allowed in restricted circumstances in most other Latin American nations. Only Uruguay, Cuba, Guyana and parts of Mexico currently allow women to the option of elective abortion.

According to the BBC,

President Fernández had made reintroducing it one of his campaign promises. “I’m Catholic but I have to legislate for everyone,” he argued.

The president also said providing free and legal abortions up to the 14th week of pregnancy was a matter of public health as “every year around 38,000 women” are taken to hospital due to clandestine terminations and that “since the restoration of democracy [in 1983] more than 3,000 have died”.

Vilma Ibarra, who drafted the law, was overcome with emotion as she spoke to reporters after it passed. “Never again will there be a woman killed in a clandestine abortion,” she said, crying.

While abortion continues to be one of the most contentious bioethical issues worldwide, there is wide support among bioethicists that the foundational principle of autonomy, which allows each person to choose and refuse medical treatment and decide what happens to their own body, provides support for the permissibility and legality of abortion.

Argentina’s current law makes abortion legal only in cases of rape or threat to the life of the pregnant person. As in many countries where abortion is illegal, abortions nonetheless happen, but less safely. Argentine feminists and feminist bioethicists have been arguing for legalization of abortion for decades.

On Friday, Argentina’s lower house passed legislation legalizing abortion in the first 14 weeks of pregnancy. This Editor is unsure of how many abortions in Argentina happen during that time period, but in the US almost 90% of abortions occur in the first 12 weeks of a pregnancy.

So this while 14 weeks is short compared with the US’s “until viability” criterion (which means 22-24 weeks depending on the state, and rarely as low as 20), it will radically increase access to safe, legal abortion for Argentines.