Charlie Gard

Charles C. Camosy writes on what we might learn from the recent case of Charlie Gard, a little boy whose parents were denied the right to care for him despite being emotionally, financially, and medically supported in wanting to try an experimental treatment for their son’s rare condition. Instead, British courts mandated that little 11-month old Charlie should die by removal of his ventilator for subjective judgments about the nature of his life as a disabled boy. Bobby Schindler visited with Charlie and his heroic parents, Chris Gard and Connie Yates, last month, so this case is particularly close to the Terri Schiavo Life & Hope Network and to me:

Why did so many argue that Charlie’s doctors were the proper authorities for deciding whether or not he merited medical treatment? By dint of their profession, physicians still possess a generalized authority and social credibility. Polling shows that Americans trust members of the medical sciences to act in the public interest more than they trust religious leaders, elected officials, or business leaders.

But even when the condition is well studied, physicians regularly make serious mistakes. Indeed, the third-leading cause of death in the United States is medical error. Art Estopinan—who has a four-year-old son with a disease similar to Charlie’s—has helped inform judgments about the Charlie Gard case by relating the poignant story of physicians telling him to take his boy home because he had two months to live. Charlie’s physicians claimed that they were much more certain about Charlie’s case, but the point made by Estopinan (and Bambino hospital) stands. When physicians know so little about these ultra-rare diseases, it is reasonable for parents to be skeptical of sweeping judgements.

But for the sake of argument, let us assume that Charlie’s doctors got all the medical data correct and made a perfect prognosis. What moral conclusions follow from their findings? None.

Nothing moral follows from medical facts. Judgments about whether or not treatment is worth pursuing will have to be made. And physicians, even with perfect medical knowledge, are not the best persons to make them.

It is not only that physicians rarely have serious training in ethics. Like all of us, they have certain biases which come from their social location. They are better educated than the average patient, wealthier, possessed of greater freedoms and opportunities. Their privileged status often causes them to underrate the value of the lives of less fortunate people. Studies have found that physicians are profoundly ableist in judging the quality of life of their patients; they often discount the worth of the disabled.

It was the ethical judgments of Charlie’s physicians that kept Charlie from getting treatment when there was a reasonable chance it could benefit him. Charlie does not belong to his physicians. He belongs to his parents. And they to him.

Charlie Gard is a child of God who now sees that God face-to-face. That is his eternal legacy. But his temporal legacy may well be forcing Western medicine to face two disturbing trends: a return to “physician knows best,” coupled with a slouch toward euthanasia on the basis of disability.

Charles makes a point here that I made last week at the Napa Institute, which is basically this: physicians and medical experts carry legitimate authority based on their stature as bearers of important and specialized knowledge, and about objective medical realities—but too often that authority is cited as the basis for imposing subjective treatment decisions. That was certainly the case with Charlie Gard, and it’s the case for many patients and families in America who find out too late that their physician, or an institution’s ethics committee, can make a unilateral and life-ending decision without the consent of the person allegedly being cared for.

Better policies for mothers

Kristen Day of Democrats for Life writes:

Democrats who oppose abortion aren’t like Republicans who oppose abortion. Not only are their priorities different, so are their policies. While Republicans who oppose abortion usually aim simply at banning the practice or making it difficult, Democrats who oppose abortion tend to take a whole-life approach, and to focus especially on reducing incentives to have abortions, rather than creating penalties.

… Democrats who oppose abortion are keenly aware of how many abortions are the result of financial stress and economic pressures, and we advocate constantly to reduce those burdens.

Signed into law along with the Affordable Care Act were several legislation proposals crafted by Democrats for Life of America called the Pregnant Women Support Act. We intended our proposals to reduce abortion by getting rid of many of the forces that push women toward abortion in the first place. We moved to eliminate pregnancy as a pre-existing condition for insurers, require State Child Health Insurance programs to cover mothers, fully and federally fund WIC and provide federal funding for day care. Likewise, when Senate Republicans moved last year to institute a 20-week ban on abortion, we at Democrats for Life of America urged legislators to include a paid family leave package along with the bill, with the aim of reducing financial burdens on pregnant women and their families. And in 2012, antiabortion Sen. Bob Casey (D-Pa.) introduced the Pregnant Workers Fairness Act, a law that would ensure that pregnant women receive reasonable adjustments on the job and that they don’t face retribution for asking to be accommodated.

… If supporting pregnant women with government programs and employment protections isn’t enough proof of antiabortion Democrats’ commitment to women’s health, safety and liberty, antiabortion Democrats have also argued for higher minimum wages and for expanding services available to pregnant victims of domestic violence, stalking and other forms of abuse. Democrats who oppose abortion want to stop abortion, but that doesn’t entail a wholesale stripping away of women’s autonomy, as the policies outlined above indicate. And it certainly doesn’t imply a disregard for women’s lives.

The abortion debate is polarized and often extremely bitter. It’s easy to imagine that there really are only two sides: yours and the other guy’s. But Americans’ views on abortion are mostly in the gray area between always legal and never legal, and each person’s moral perspective will be nuanced by his or her own values and experiences. When Luján says that Democratic candidates who run for office in districts with strong antiabortion leanings deserve funding from the party, he isn’t saying that the party is going to fund candidates whose positions are tantamount to those of Republicans. He’s rightly observing that Democrats — real, bona-fide Democrats — do have a range of views on abortion, and to win as many elections as possible, the party has to recognize that.

I joined Democrats for Life because Kristen Day seems like one of the few people who want to create a real spectrum of choice.

Ethics of sexual relationships

Nathan Smith conveys the classical understanding of sex:

Men are tempted to exploit women for pleasure and prestige, and need to be on their guard against this temptation. Exploitation is worst when the woman is underage or drunk or emotionally unstable, or when the man uses a position of power to intimidate her, tells lies to impress her, promises to marry her, conceals his marriage to someone else, gets her pregnant, or exposes her to a sexually transmitted disease. But the bottom line is that if he serves his own pleasure at the expense of her welfare, that’s exploitation. If he knew, or could have known if he thought about it, that she’d regret it the morning after, that’s exploitation. And if he knew, or could have known, that she’d regret it one year, or five years, or fifteen years later, when she’s wasted some or most or all of her remaining reproductive years on a guy who wouldn’t marry her, that’s exploitation, too. “He used me” is a standard—and just, and accurate—complaint made by women against men they’ve had sex with. … The only ethically safe course is either to marry a woman or else to leave her chastity intact. …

Humans are intensely ambivalent about sex, regarding it by turns as vulgar, gross, and unseemly, or as sublime and beautiful. We place rape among the worst of crimes, while romantic love is one of life’s crowning glories, the theme of half the novels and songs the human race has written. The deceit and damage involved in so much premarital sex—cool dude bangs insecure girl and turns her into a single mom on welfare for life—fully justifies the repugnance that is one side of this ambivalence.

On the other side is the glory of marriage, and while there’s more to that glory than the selfish genes can explain, they shed an important light on it. For when two people marry, “leaving father and mother” as the Bible says and committing to lifelong monogamy, their genetic interests are united, at least approximately, creating a harmony of instincts. Ordinarily, our instincts put us in competition with our fellow human beings. In marriage, instinct is on the side of love.

Children are the large, obvious reason why marriage is good for society and why premarital sex isn’t. Sexual relationships always absorb a lot of people’s energy and attention, so they impoverish society unless they give something back. Marriage makes the next generation, under the most favorable conditions. Premarital sex is usually not intended for procreation, and if it does result in children, they enter life at a disadvantage because they lack stable parental commitments to raising them.

But even compared to childless marriage, premarital sex has an unwholesome character because, by failing to address genetic conflicts of interest through marriage, it allows competition, exploitation, and fear of betrayal to penetrate into the heart of the most intimate human relationships, not stealthily, but openly and as if by right. There is no way to make premarital sex promote the good of society or of the individuals involved. The world would be a better place if it never happened at all.

If this perspective seems outrageous or even just incredibly distant to you, that’s an example of how revolutionary the Sexual Revolution of the 1960s really turned out to be. The ethics of human sexuality can be far richer than our present “consent” culture allows for.

Democrats for Life membership

I’ve been following Democrats for Life of America for a while now, after discovering them last year. I’ve written about my perspective on building a culture of life in America, and specifically on the need to create a true spectrum of choice in terms of our thinking and public policies. I joined Democrats for Life as a basic member today because I heard good things about their recent conference in Philadelphia and particularly because I’m impressed with their successes in advancing the Pregnant Women Support Act through the Affordable Care Act:

The Pregnant Women Support Act – the Pregnancy Assistance Fund (PAF) is one of our proudest accomplishments. Signed into law as part of the Affordable Care Act, 17 States received PAF grants and are now helping pregnant women. It is not enough to simply oppose abortion; we must provide support and provide options for women facing unplanned or crisis pregnancies.

Senator Casey (D-PA) introduced legislation to expand the PAF. Please contact your Senator and urge him or her to support S. 144, the Pregnancy Assistance Fund Expansion Act.

Background:

DFLA proposed a comprehensive plan that will reduce the number of abortions by 95% in the next 10 years by promoting abstinence, personal responsibility, adoptions and support for women and families who are facing unplanned pregnancy. The 95-10 Initiative seeks to reduce the number of abortions in America through Federal, state and local efforts as well as support and encouragement to volunteers and dedicated people on the front lines helping pregnant women. Much attention has been given to ending abortion or keeping it legal. We believe that we must do more to reduce the abortion rate by helping and supporting pregnant women. …

We support helping pregnant women who wish to carry their children to term but because of lack of resources believe abortion is their only option. Senator Bob Casey (D-PA), Congressman Lincoln Davis (D-TN) and Pro-life Democrats in Congress who share this same commitment introduced the Pregnant Women Support Act in the U.S Senate and U.S House. The legislation is a comprehensive approach to provide support for pregnant women who want to carry their child to term. Most of the provisions were included in the Affordable Care Act (ACA) under the Pregnancy Assistance Fund (PAF).

Some of the programs included are:

  • establish a toll-free number to direct women to places that will provide support
  • collect accurate data on why women choose abortion
  • provide Pregnancy Counseling and Childcare on University Campuses
  • provide accurate information to patients receiving a positive result from prenatal testing
  • provide counseling in maternity group homes;
  • increase the adoption tax credit and it permanent
  • eliminate pregnancy as a pre-existing condition with respect to health care;
  • provide grants for ultrasound equipment;
  • support informed consent for Abortion Services;
  • increase awareness about violence against pregnant women;
  • require the SCHIP to cover pregnant women and unborn children;
  • provide free home visits by registered nurses for new mothers.

I would support Planned Parenthood if they no longer performed abortions, and instead focused on delivering on their pro-choice philosophy in a life-affirming way that equally supports both mother and child. In the meantime, measures like the ones Democrats for Life advocate are necessary steps toward public policy that recognizes that abortion should be “rare” as President Clinton envisioned. Today it’s not rare, and I have to think a huge part of the reason is because culturally we’re not empowering mothers and fathers to feel that they have any practical alternative other than abortion.

March for Life 2017

The 44th March for Life took place in Washington this morning. I stayed at the Mayflower Hotel last night, picked up my board packets for tomorrow from FedEx Office at 16th and K Street, and then Ubered to the Washington Monument where the stage was set for the Vice President Mike Pence’s noon appearance. It’s the first time in its history that anyone this high-ranking in government is attending the march.

We’re approaching the half century mark for an America where we encourage men and women to abort unexpected children rather than equip those parents with the resources they need to care for their children. In any nation, but especially the wealthiest in the world, this is social failure. There’s simply no ethical, medical, or scientific escaping what takes place in an abortion, whether at 3 weeks, 30 weeks, or the heinous and only semi-recently outlawed “partial birth” (read: birth) abortions that were banned barely a decade ago.

After Mother Teresa’s National Prayer Breakfast address in the early 1990s (which I’ve written about previously), her lawyers filed a petition that included this:

“America needs no words from me to see how your decision in Roe vs. Wade has deformed a great nation. The so-called right to abortion has pitted mothers against their children and women against men. It has sown violence and discord at the heart of the most intimate human relationships. It has aggravated the derogation of the father’s role in an increasingly fatherless society. It has portrayed the greatest of gifts—a child—as a competitor, an intrusion and an inconvenience. It has nominally accorded mothers unfettered dominion over the dependent lives of their physically dependent sons and daughters. And, in granting this unconscionable power, it has exposed many women to unjust and selfish demands from their husbands or other sexual partners.

“Human rights are not a privilege conferred by government,” she said. “They are every human being’s entitlement by virtue of his humanity. The right to life does not depend, and must not be contingent, on the pleasure of anyone else, not even a parent or sovereign. The Constitutional Court of the Federal Republic of Germany recently ruled: ‘The unborn child is entitled to its right to life independently of its acceptance by its mother; this is an elementary and inalienable right which emanates from the dignity of the human being.’

“Americans may feel justly proud that Germany in 1993 was able to recognize the sanctity of human life. You must weep that your own government, at present, seems blind to this truth.”

The first step is recognizing what abortion is. Once we achieve unity in acknowledging the reality of the thing, we can talk shop on the social policies we need to ensure no one is burdened with raising child they aren’t equipped to raise, and that every mother who wants to keep her child is supported with whatever she needs: housing, tuition assistance, anti-discrimination protections, and whatever else.

It’s as much chance as anything else that I’m here to say these things, which is why I feel an obligation to speak and get people uncomfortable when necessary to stir conversation to a point where we can reach that political unity to really empower mothers with a true spectrum of choice, rather than just giving them one choice.

Hentoff’s slippery slope

Nat Hentoff, great free speech defender and civil libertarian, died last week. I remember my grandmother reading and praising Hentoff’s incisive and provocative writing when I was growing up. I’m sharing an excerpt from Hentoff’s 1986 Chicago talk on The Indivisible Fight for Life:

I’ll begin by indicating how I became aware, very belatedly, of the “indivisibility of life.” I mention this fragment of autobiography only be cause I think it may be useful to those who are interested in bringing others like me – some people are not interested in making the ranks more heterogeneous, but others are, as I’ve been finding out – to a realization that the “slippery slope” is far more than a metaphor.

When I say “like me,” I suppose in some respects I’m regarded as a “liberal,” although I often stray from that category, and certainly a civil libertarian – though the ACLU and I are in profound disagreement on the matters of abortion, handicapped infants and euthanasia, because I think they have forsaken basic civil liberties in dealing with these issues. I’m considered a liberal except for that unaccountable heresy of recent years that has to do with pro-life matters.

It’s all the more unaccountable to a lot of people because I remain an atheist, a Jewish atheist. (That’s a special branch of the division.) I think the question I’m most often asked from both sides is, “How do you presume to have this kind of moral conception without a belief in God?” And the answer is, “It’s harder.” But it’s not impossible.

For me, this transformation started with the reporting I did on the Babies Doe. While covering the story, I came across a number of physicians, medical writers, staff people in Congress and some members of the House and Senate who were convinced that making it possible for a spina bifida or a Down syndrome infant to die was the equivalent of what they called a “late abortion.” And surely, they felt, there’s nothing wrong with that.

Now, I had not been thinking about abortion at all. I had not thought about it for years. I had what W. H. Auden called in another context a “rehearsed response.” You mentioned abortion and I would say, “Oh yeah, that’s a fundamental part of women’s liberation,” and that was the end of it.

But then I started hearing about “late abortion.” The simple “fact” that the infant had been born, proponents suggest, should not get in the way of mercifully saving him or her from a life hardly worth living. At the same time, the parents are saved from the financial and emotional burden of caring for an imperfect child.

And then I heard the head of the Reproductive Freedom Rights unit of the ACLU saying – this was at the same time as the Baby Jane Doe story was developing on Long Island – at a forum, “I don’t know what all this fuss is about. Dealing with these handicapped infants is really an extension of women’s reproductive freedom rights, women’s right to control their own bodies.”

That stopped me. It seemed to me we were not talking about Roe v. Wade. These infants were born. And having been born, as persons under the Constitution, they were entitled to at least the same rights as people on death row – due process, equal protection of the law. So for the first time, I began to pay attention to the “slippery slope” warnings of pro-lifers I read about or had seen on television. Because abortion had become legal and easily available, that argument ran – as you well know – infanticide would eventually become openly permissible, to be followed by euthanasia for infirm, expensive senior citizens.

And then in the New York Review of Books , I saw the respected, though not by me, Australian bio-ethicist Peter Singer boldly assert that the slope was not slippery at all, but rather a logical throughway once you got on to it. This is what he said – and I’ve heard this in variant forms from many, many people who consider themselves compassionate, concerned with the pow erless and all that.

Singer: “The pro-life groups were right about one thing, the location of the baby inside or outside the womb cannot make much of a moral differ ence. We cannot coherently hold it is alright to kill a fetus a week before birth, but as soon as the baby is born everything must be done to keep it alive. The solution, however,” said Singer, “is not to accept the pro-life view that the fetus is a human being with the same moral status as yours or mine. The solution is the very opposite, to abandon the idea that all human life is of equal worth.” Which, of course, the majority of the Court had already done in Roe v. Wade.

The heart of pro-life philosophy can be approached through two questions:

  1. Do we believe that all life is created equal and deserving of equal protection of its inalienable rights?
  2. Do we believe that life exists prior to birth?

Marketing specific people

Marc writes:

You cannot take a picture of a general “mother” or “child.” You cannot photograph the idea of “pregnancy,” “family,” or “abortion” — only this pregnancy, this family, and this abortion. A photograph of a child is always of a real, particular child, who stood at a particular place and a particular time and had his photo taken. Photography is always photography of the real.

The difficulty for the pro-life movement is that, as it works for the abolition of abortion, it uses pictures of children, not as pictures of this or that real, particular child, but as stand-ins for “the child in general.” When a stock-photo of Mitchell, a beautiful baby, forms the background of a sign that reads “Protect Life,” no one imagines it is demanding that we protect Mitchell’s life. Mitchell has since grown up into a pimply, 19-year old communist working at a 7-11. We do not see him in the image. We see the general idea of “the child.” He has become a symbol. The rhetorical success of the baby-sign depends on us seeing “through” Mitchell and towards the general idea of “baby,” “child,” “person.” The image presents the person anonymously — and anonymous images can inspire apathy in the gaze that sees them.

I think it’s time that pro-life marketers turn to featuring survivors of abortion, and testimonies of mothers and fathers who chose to bear their children—rather than essentially stock photos of cradled babies. We need to understand the human stories that led to, resulted in, and benefited from the choice for life.