The Church and the Cost of Disability
There is a wonderful story told of St. Lawrence, who when a Roman prefect gave him three days to hand over the wealth of the local Church, sold it all and gave the proceeds to the needy. He then gathered up the sick, the poor, and the disabled, and presented them to the official as the treasures of the Church. We can’t help but admire his audacity, which cost him his life, but we must also consider the significance of the truth that he declared, which must be as boldly proclaimed in every age.
This heroic witness is urgently needed today, where the vulnerable, especially those with disabilities, are considered not as treasures, but financial liabilities. One of the most haunting examples is a type of medical research involving the cost of disability. Economic analyses of health care costs are not inherently evil, as they often provide solutions for maximizing the good amidst scarce medical resources. But the research I’m referring to is a particular model of cost-effective analysis, widespread in the evaluation of tests that screen for prenatal conditions, which is both morally corrupt and chilling in its implications.
Its most sinister form is based on the premise that a child with a disability such as Down Syndrome presents a lifetime monetary cost to society. One prenatal screening procedure is considered cost-effective relative to another, or to no screening at all, to the extent that the amount spent on testing procedures and related costs is offset by that saved through detecting and aborting children with disabilities. Many don’t realize the full horror of these calculations.
Behind every prenatal screening test lies an appraisal of how much the rest of us—insurance companies, taxpayers, etc.—stand to gain if a disability is detected and the child is destroyed. While the Church unequivocally condemns these abortions as well as the utilitarian attitudes underlying them, she nevertheless misses many opportunities to profess the value of these children with her own life as Lawrence did.
In some instances–education and formation, for example–she, too, is reluctant to pay the costs required for those with disabilities. After briefly discussing the historical roots and current manifestations of the cost-effectiveness paradigm in prenatal medicine, I will propose how the Church’s own living tradition not only appropriately condemns this practice but also invites an entirely different response to the cost of disability.
The Way of Death
Economic calculations around disability are not new. In this country, the eugenics movement rationalized the sterilization of the “feeble-minded” in part by the amount saved through limiting their reproduction. This was taken a step further a short time later in Germany during the second world war. Euthanasia was added as a cost-saving measure, and an exact price of 60,000 Reichsmarks was assigned to the life of an individual with mental incapacities. This was presented as a cost burden for everyone; one propaganda poster warned “Fellow Citizens, this is your money, too.” Under the infamous T4 program, as this euthanasia campaign was called, an estimated 250,000-300,00 children and adults with disabilities were killed.
Although the eugenics movement became very unpopular after WWII, its ideology has persisted, especially in the medical field. Writing about this issue a few years ago, I calculated that a savings of 60,000 Reichsmark translated to about $ 446,000 per disabled individual. This was strikingly close to the $ 451,000 amount calculated in 1992 by California’s Center for Disease Control to estimate the societal costs of supporting an individual with Down syndrome. This figure from California, adjusted for inflation, has been used for decades in cost-effectiveness calculations of prenatal screening of these unborn children, and continues to inform current health care policy and practice.
One notable example of this occurred in 2007 when the American College of Obstetricians and Gynecologists (ACOG) changed its guidelines to recommend prenatal screening for every pregnant woman, not just those over 35. Infants with Down syndrome seemed particularly singled out for destruction here. The previous “over 35” screening policy had missed many of these children born to younger women. Screening every pregnant woman would ensure that the remainder be identified for destruction. Defenders of universal screening denied any eugenic motives, claiming that instead it offered women greater choice. However, the cost-effectiveness literature in the several years preceding 2007 had demonstrated the economic benefits of screening women under 35 given the high abortion rates. One study concluded, “In fact, we found no age threshold below which prenatal diagnosis would be cost ineffective.” Surely these findings, published in leading medical journals such as the Lancet, had not gone unnoticed.
Some researchers are more candid when stating the endgame of cost-effectiveness research. A 2018 article in the journal Prenatal Diagnosis described the result if all pregnant patients were offered a new form of diagnostic test for genetic fetal anomalies. The model estimated the lifetime cost associated with Down syndrome at $ 1 million dollars, and the average cost of caring for children with other serious chromosomal errors at $ 500,000. The authors conclude: “If, as an extreme hypothetical, all patients underwent diagnosis and all with anomalies chose to terminate, the health‐care system could save about $ 7 billion per year per 1 million patients. In the US, with approximately 4 million births per year, theoretically, the savings could be $ 28 billion. Even reducing costs by 50% would still suggest $ 14 billion savings.” The savings in this model come from the proposed abortions of 8000 infants with Down syndrome and 60,000 infants with other chromosomal anomalies per year.
The models have changed somewhat over the past decade. Lifetime costs of a disability are less commonly stated. Perhaps this more recent reticence to explicitly declare lifetime expenses is to avoid the unseemly appearance of abortion for profit. However, the emphasis remains on finding the least expensive way to identify the most cases of infants with Down syndrome and other disabilities. Readers of studies involving these models are left to draw their own conclusions, which remain inescapable. Because the abortion rates of conditions such as Down syndrome have held steady at between 70 and 90%, prenatal screening remains very “cost-effective.”
These calculations extend beyond medical research and practice. For example in March of 2016, in legislative hearings on a ban on disability-selective abortion in Indiana, one of the leading opponents fiercely argued against it on economic grounds. He warned that the proposed law “creates a bill that will have a huge fiscal [sic] for the state of Indiana”. Another senator warned that “With this bill you’re imposing a huge tax increase on families.” These words echo as though a refrain from a bygone era, “Fellow citizens, this is your money, too!” It is gut-wrenching to know that physicians and lawmakers calculate in this way the monetary savings associated with killing children with a disability.
The Way of Life
Besides horror at such a calculus, what is the proper Christian response? While circumstances have changed, such acts are repeatedly proscribed in the Old Testament. While the command not to kill is a general part of Mosaic law, taking a life for financial gain is singled out for particular condemnation. In the Book of Ezekiel, this act is one of the abominations for which the leaders of Israel are condemned, likened to that of wolves tearing apart their prey (Ez 22:27). The Book of Proverbs warns against killing the innocent to gain wealth and bemoans the fate of those who do so: “They lie in wait for their own blood, they set a trap for their own lives” (Prv 1:19). Earlier, in Deuteronomy, we see this admonition stripped of all metaphor, and presented as one of the twelve curses which Moses instructed six of the tribes of Israel to pronounce on Mount Ebal: “Cursed be anyone who accepts payment to kill an innocent person!” (Deut 27:25)
The vivid imagery paired with the consequences of killing for monetary gain that we see in the Old Testament may satisfy our desire for justice for those who calculate a profit at the deaths of innocent children. But in the spirit of understanding this within the living tradition of our faith, let’s instead follow this accursed act into the New Testament, that most profound example of living tradition: “Then one of the Twelve, who was called Judas Iscariot, went to the chief priests and said, ‘What are you willing to give me if I hand him over to you?’ They paid him thirty pieces of silver, and from that time on he looked for an opportunity to hand him over.” (Matt 26:14-16) The compensation of 30 silver pieces, the price of a slave, fulfills an Old Testament prophecy of Christ’s death. In the overall account of the Passion this may seem like a peripheral detail. For the discussion at hand however this narrative assumes central importance. We witness what happens when the old law concerning the abomination of killing for profit meets the new law found in Jesus Christ. But let’s first examine the contrasting situation of the lifeless tradition depicted through the acts of Judas and the Pharisees:
Then Judas, his betrayer, seeing that Jesus had been condemned, deeply regretted what he had done. He returned the thirty pieces of silver to the chief priests and elders, saying, “I have sinned in betraying innocent blood.” They said, “What is that to us? Look to it yourself.” Flinging the money into the temple, he departed and went off and hanged himself. The chief priests gathered up the money, but said, “It is not lawful to deposit this in the temple treasury, for it is the price of blood.” (Matt 27:3-8)
Judas repents when he realizes that he has betrayed innocent blood for a price, but takes his own life because he cannot see beyond the curse of Deuteronomy. The Pharisees also know well the law and the tradition regarding the accursed status of blood money, and so they refuse Judas’ returned silver. This act is sheer hypocrisy because they share in Judas’s guilt through their own involvement in the transaction.
It is against this backdrop that we wait for Christ’s response to the way of death. First, we can see that the Law still holds. In the gruesome scenes of the scourging and the crucifixion, we recognize the abomination described in Ezekiel as we witness the innocent Lamb torn apart as though by wolves. In fact, we can imagine here all of heaven and earth looking on in expectant horror. If one who kills a man for profit is cursed, what will befall us who have killed God made man in exchange for a small amount of silver? But as we wait for divine retribution, we are astounded to see that instead of death, we are given life. And not because the law has been abolished, but because its truth has been illuminated in full by Christ’s offering.
As we contemplate this scene, the reason for Deuteronomy’s curse becomes apparent. We cannot affix a price to any man. By exchanging his life for ours, Christ established our value as infinite in him. Likewise, no man has the right to profit from killing another, for Christ has ransomed us, and our lives belong to him. But here, revelation takes a surprising turn. We are not simply prohibited from killing for gain, but in an astonishing inversion of the curse, we are shown a new command–to offer our own lives instead for the cost of others. From Christ’s act, among other things, we learn that we can indeed compute the cost of another’s life, but only to arrange ours suitably to compensate for it.
Christ knew precisely how much we would cost him, and the cross was divided up with a share for each. In the Hours of the Passion, Servant of God Luisa Piccarreta describes Christ in the act of making these calculations as he approaches the cross:
. . . with Love You gaze on It, and with firm step You approach It and embrace It. But first You kiss It, and as a shiver of Joy runs through Your Most Holy Humanity, with highest contentment You gaze on It again, measuring Its length and breadth. In It, already, You establish the portion for each creature. You dower them all.
The language used here to describe the Passion, “ransom”, “dower”, etc., reflects the fact that Christ has opened up a new economy. He pays for us not with money, but with his blood. We could not have anticipated such a King who would come like a beggar, gathering to himself, not the riches of the world, but all the wages of sin, every form of suffering, and then proceed to spend them for us with such abandonment.
Through the cross, then, not only does our slain Lord illuminate Deuteronomy’s curse in full, but He saves us from it. Recall the hymn that sings of Christ who “bears the dreadful curse for my soul”. Only an excess of love could lead One killed in an exchange of money to also bear the curse associated with that act, along with the curses for every sin. Christ bore that curse even for Judas’ soul. However, Judas’ tragic fault was in his heart, which had been hardened against such great extravagance, hardened against Christ who offered to pay the price of his sin.
Living Fully This Way of Life
With this much more expansive view, we return to the issue of cost-effectiveness, as well as to the cost of disability more generally. The question becomes how to receive and live all that we have witnessed in the gospel. Certainly, the Church condemns the practice of killing for gain, as it has always been condemned. But she also invites us to hope that the curse will be removed from those who calculate profit at the death of a child. We pray that, unlike Judas, they do not despair when they recognize they have sinned in shedding innocent blood but instead see that Christ has already paid the wages of their terrible debt for them.
Our faith tradition changes how we see the cost of sin incurred by all the physicians and lawmakers involved in the killing of these infants. But what of the cost associated with Down syndrome and other disabilities? In Christ we see the incomparable worth of these persons, of course. And we see that much of what has been counted as cost in the equations of death–their suffering or the suffering we bear on their behalf–becomes a net gain for all in the new economy of Christ. We, like Him, are invited to spend the currency of bearing these crosses for the good of the whole world.
But there is perhaps an even more striking example of how living our tradition of faith emerges in this context. To explain this, let me note that one approach to combating this type of cost-effectiveness analysis is to simply refigure the equation, inputting a lower cost associated with disabilities such as Down syndrome (recognizing, for example, that some individuals are employed). This approach is problematic on several counts. First, it appears to concede the point that a cost-effectiveness model is licit here. It is as though the fault lies only in the numbers, and not in the mathematical equation itself. Second, if proposed as a strategy to stop the killing of these children, I am not optimistic about its success because I fear that the financial costs merely serve as a placeholder for all the perceived costs of a child with disability such as emotional suffering, loss of our own independence, and so on.
A much more appropriate response is that given by Servant of God Jerome Lejeune, the scientist who discovered the chromosomal basis for Down syndrome. He, too, was asked about the cost of disability. Rather than haggling over an amount, he answered truthfully and with the most defiant courage, “It cannot be denied that the price of these diseases is high—in suffering for the individual and in burdens for society. Not to mention what parents suffer! But we can assign a value to that price: It is precisely what a society must pay to remain fully human.”
Lejeune’s claim can be interpreted in several ways. By paying the cost and thus refraining from killing those with disabilities, we are spared the fate of becoming inhuman, like the cursed ones of revelation who kill for gain. In this sense, we stoically shoulder the high costs to cling to our humanity and avoid becoming like the wolves circling their prey. But there’s a positive way to understand this as well, one which highlights a hallmark of living tradition. Thomas Merton wrote of the vitality of living tradition, that “It is a living spirit marked by freedom and by a certain originality”.
We have seen the originality of God in Christ, how he responds to the cost of another (of all of us) by pouring out his life in exchange. When we bring his act into an encounter with the costs presented by one with a disability, there seems but a single invitation—to pour out our own lives in payment, as images of God in imitation of Christ. It is in this exchange, and in the proximity to those with disabilities that this requires, that something original in us emerges. We become, in Lejeune’s words, fully human.
What does this mean in the context of responding to those with disabilities, to become fully human? Several decades earlier than Lejeune, Christian theologian Dietrich Bonhoeffer had offered one explanation. During the early days of Hitler’s regime, he spent time in a community for those with disabilities called Bethel, and came to understand that life shared with these individuals becomes, in the words of one biographer: “an embodied recognition that all human life is essentially feeble, defenseless, and dependent.” What’s more, it became clear to him that only one social model can accommodate this fact. Charity, or neighborly love, becomes the necessary “matrix of all human sociality”.
More recently, American Ukrainian Archbishop Boris Gudziak gave witness to this firsthand, when in 2002 he founded the Ukrainian Catholic University centered around The Emmaus Center, a home for individuals with intellectual disabilities. He intended to promote healing in a society that had become distrustful after years of oppression. Program director Christina Angles d’Auriac remarked in this short film that the residents “make us more human.” And in accepting one another, she says, “we can create a new world.”
The truth of our humanity revealed to us by those with disabilities does not become simply a new value that is inserted into the cost-effectiveness model, something those with disabilities can now offer to counterbalance the debt of their existence. This transactional model is abandoned entirely, and a new way of life, “a new world”, as d’Auriac says, becomes apparent. Here we see the originality of which Merton spoke, that ever-ancient-ever-newness of our faith. The kingdom of heaven is announced here once again: “Without cost you have received; without cost you are to give.” (Matt 10:8)
There is a danger, however, that we see these situations—Bonhoeffer’s Bethel, Gudziak’s Emmaus Center—not as living tradition that beckons us, but as rarified or heartwarming stories. Instead, the living spirit emergent in these communities (and in families of those with disabilities, most certainly) remains an invitation to the entire Church in all its parts, hands, feet, heart.
How often do those with disabilities come to the parish for catechesis, to our Catholic schools, to seminaries, only to be told that they are too costly to accommodate? “We don’t have the resources.” And how can we expect the secular world of medicine and public policy to ever comprehend the worth of those with disabilities, if it does not witness the Church proclaiming their dignity until it hurts by paying every cost, by laying down her own life for them in concrete ways? While the Church condemns their killing, what a tragedy it is that, nonetheless, she so often cuts herself off from life with them, from the fullness of humanity, from this matrix of charity, this new world, which their presence makes possible. Instead, how beautiful if, in gathering all those with disabilities to herself, she could proclaim like St. Lawrence that “The Church is truly rich, far richer than the emperor.”
