The recent news photos of Rick Santorum tenderly cradling his stricken daughter, Isabella, touched my heart. A victim of Trisomy 18 or Edwards syndrome, Isabella suffers from a far graver condition than the better-known Down syndrome, who often live into their teens and beyond—Trisomy 18 children rarely survive the first week.
But as a fellow Catholic, the fate of such children shook me into some serious questioning about the relation among Rick Santorum’s religion, his public policies, and his personal family tragedies. And I wonder especially how Santorum’s version of Catholicism aligns with these policies.
Yes, it is one thing, once a child is born with Trisomy 18, to accept, and then care for her. Without reservation, I am in awe of those parents who do. But, why would one risk putting oneself in the position where a Trisomy 18 pregnancy would be statistically probable?
Why would one choose, in effect, to take the risk of bringing a doomed child into the world?
I am not arguing that such was the intention of Rick Santorum and his wife. But, I am arguing that the political and religious positions to which he has chosen to commit himself bear responsibility, in this case, for the unnecessary suffering of an uncomprehending young person.
As sure as Santorum’s commitment to care for his daughter, once born, arises out of his Catholic value system, so also is his version of Catholicism responsible for the many sufferings imposed upon young Isabella in the first place.
Consider these recent events. The former two-term Pennsylvania senator had just suspended his presidential campaign to be at his stricken child’s bedside. Here we catch a privileged glimpse of Rick Santorum, the tender, loving father, not the driven politician. The media images of a father, embracing a child that some might have cast off or aborted, showed a morally rigorist man in a new, humane and compassionate light. Santorum loves his daughter unconditionally and soulfully. I applaud him for revealing himself in ways that might threaten to diminish his machismo, when the harsh politics of the season seems to demand a candidate’s show of meanness.
A Kind of Spiritual Egoism?
Isabella, aged four, as many may know, is the eighth Santorum offspring. She recently came down with one of those attacks to which Trisomy 18 children are chronically, and predictably, vulnerable. One can only commiserate with the Santorums in their time of sorrow, as I do.
My quarrel, such as it is, is with the lack of responsibility shown by the Santorums and their Catholicism in contributing to the conditions which made the anguishing plight of young Isabella inevitable in the first place.
In saying this, I realize that I may be breaking the taboos protecting the private grief and religious beliefs of the Santorum family from questioning. It is their business—and nobody else’s. But, given Rick Santorum’s prominence in public discourse about sexual and reproductive politics, he himself has already well blurred the lines between the personal and the political.
So, to my questions. First, I am not questioning whether failing to abort a foetus afflicted with Trisomy 18 syndrome was itself morally responsible. (That is the subject for argument on another day.) I am concerned with judgments made at a much earlier stage. We know, for example, that some small percentage of these children live beyond the first year. Unlike Down syndrome children, the prognosis for Trisomy 18 children is grave, with death ever possible. 90% of these children have serious cardiac malformations, suffer neurological defects, spina bifida, scoliosis, hearing loss, or will suffer seizures, have difficulty with feeding, and so on. Isabella, at four years old, has survived these vulnerabilities. My admiration goes out to any Trisomy 18 syndrome parents who provide a model caring home environment in which such a child feels loved, accepted, and a part of the family. The Santorums seem to one and all to model this ideal of compassion, love and acceptance in raising Isabella. How many of us could do the same, even with the financial resources available to the Santorums?
No, the larger question for me—and the one where religion and public policy come to the fore—is why one would take the risk of such an outcome? Perhaps the Santorums never imagined that Karen, in her late 40s, like the biblical Sarah, could conceive at all? Quite possibly. Then, once conceived, the child could be none other than “God’s gift,” entailing all the “sacrifice” that the Santorums have lavished on Isabella.
Of course, in today’s pussy-footing, self-censoring public talk about religion, we never ask how Isabella feels about being the occasion for edifying “sacrifice” by the Santorums? It is fine for Rick Santorum to tell us how such sacrifice has deepened his faith, strengthened the bonds uniting their family, and so on. Good for him. Moreover, Santorum would want no pity from me. He identifies with the uplifting narrative of sacrificing for the sake of others, protecting the weak, championing “life,” building character by overcoming adversity, seeing blessing where others see only curses, and so on.
But I find all this attention to the suffering and sacrifice of Rick Santorum more than a little self-centered—a kind of spiritual egoism. I feel that this should not be about him; it should be about Isabella. But, who has asked of her in the media? Does anyone care about how she “sacrifices” so mutely, so uncomprehendingly—when not even capable of considering the choice? While high-minded theological rationales enrich Rick Santorum’s life story, what have Catholic theologians to say about how Isabella’s life story might read? Is her “character” being built up by the pain she suffers? Does she see “blessings” in the diseases that wrack her body? Is she “uplifted” by some commitment to “life” one can scarcely imagine her capable of making?
So, I must ask why potential parents would put themselves in the position where they would contribute to bringing a child into the world with Trisomy 18? Why, instead of “God’s gift,” was not the conception of a child with a genetic disorder come labeled “God’s warning”? Why doesn’t this conception chastise the parents for their irresponsibility of engaging in unprotected sex, when they full well know the high odds for conceiving such a child? Was the still-birth of Gabriel in 1996 perhaps a warning that should have been heeded? Why didn’t this cause Santorum to reconsider his attempts to thwart contraception access and education? What has to happen in the real life of still-born or Trisomy 18 infants before one takes a second look at one’s principles—religious or not?
Could it be, for example, that Santorum’s distrust of science, such as his opposition to evolutionary theory, dismissal of climate change and such has bled into his personal life? Did he sneer at medical statistics in favor of throwing up his arms in surrender to “Thy will be done”? Second, I simply cannot fathom why it would be so important for a woman of Karen Santorum’s age—48 years old—to have risked conception, and ignored all the risk factors attendant in conception, just to produce another offspring; especially when the Santorums have already been so bounteously blessed? (The same goes for the somewhat younger Sarah Palin.) Not to be hard on the Santorums in this time of pain, but what were they thinking?
When Contraception is Not an Option
Santorum’s longstanding public opposition to contraception actually makes him, oddly enough, even more stringent than the Pope, who at least permitted the use of condoms to AIDS sufferers—married or not! Doesn’t the spirit of the Pope’s grant of exemption to AIDS victims at least suggest a similarly responsible attitude might have been adopted by partners wishing to avoid the risk of something like a Trisomy 18 pregnancy? For political and religio-ideological reasons, contraception was never an option. And, that is precisely the note on which I should like now to conclude.
This confluence of politics and religion brings me right to Santorum’s public policy opposition to contraception. In his public (and apparently private) life, Santorum has, in effect, hewed to the Vatican line that so-called “artificial” contraception constitutes an “unnatural” frustration of the natural end of the sex act. But, like most good politicos Santorum hides his Catholic animus to contraceptive rights. Notably, he takes cover in legalisms. He opposed Griswold v. Connecticut—the judgment guaranteeing contraceptive right to married couples—because he disagreed with the Court that right of privacy exists in the Constitution. Beyond its cramped legalism, I find this maneuver devious. Santorum dare not say what truly moves him in this debate—namely his unswerving loyalty to the Vatican’s proscription of “artificial” methods of birth control and family planning as against nature.
So, while we cannot, and should not, stop our hearts from going out to the Santorums and their daughter, I think we need to remember the politics in the story. In particular, Rick Santorum’s Catholic sexual politics cannot be separated from the sorrows of his private life, and from his stricken child. Sadly, the private tragedy of Isabella’s illness cannot be separated from the kinds of misguided public policies for which Rick Santorum has always stood.
