The Disabled Jesus

I know something about hope, enough at least to know what Senator Bill Frist meant when he said during a debate on funding embryonic stem cell research: If your daughter has diabetes, if your father has Parkinson’s, if your sister has a spinal cord injury, your views will be swayed more powerfully than you can imagine by the hope that a cure will be found in those magnificent cells, recently discovered, that today originate only in an embryo.

That kind of hope is a powerful force, which can be brought to bear on many other kinds of situations and decisions, too. I felt the power myself while lying on a table in a doctor’s office five months pregnant with my son, and the level two ultrasound that had just been performed did not conclusively establish whether my son had Down Syndrome. It was probably the hope that he did not have it that persuaded me to proceed with amniocentesis. Hope follows a logic of its own, and like love, hope takes risks. I discussed with the doctor all the scientific factors that decreased the risk of miscarriage sometimes associated with the procedure (the advanced stage of my pregnancy, the position of my baby, the easy access to a large pool of amniotic fluid and the doctor’s skill and experience). Yet it was probably that futile hope that tipped me over the edge.


My son, it turns out, has Down Syndrome and, we later learned, Autism Spectrum Disordernot anything that stem cell research promises to cure. Still, both my experience of hope and the decision to act on behalf of my son give me empathy with others, like those whose loved ones might find their illness alleviated by the findings of embryonic stem cell research.

When pregnant again five years later, I underwent the preliminary prenatal testing up through the level two ultrasound, but did not opt for amniocentesis. That time, the benefit of knowledge, I judged, did not outweigh the risk. By then, I had learned from my son that having a child with a disability was not an unmitigated tragedy. Hope no longer exerted so powerful a pull.

Now I harbor another hope, hope for a cure for autism. It causes me to identify with the people Senator Frist described. I ask myself, hypothetically, What if embryonic stem cell research could cure what ails my son?

Drawing Critical Distinctions

Alongside experience and empathy, Catholic tradition also helps me navigate the dangerous waters of medical decision-making. Is there much difference, I have wondered, between my decision to have amniocentesis and a scientist’s decision to engage in embryonic stem cell research? Both involve balancing the risk to innocent lives against the benefit of increased knowledge.

The church draws a sharp distinction between the two situations, however, one that I have found helpful. With respect to prenatal diagnostic tests, Pope John Paul II wrote in Evangelium Vitae:

When [they] do not involve disproportionate risks for the child and the mother, and are meant to make possible early therapy or even to favor a serene and informed acceptance of a child not yet born, these techniques are morally licit. But since the possibilities of prenatal therapy are today still limited, it not infrequently happens that these techniques are used with a eugenic intention which accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of normality and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well.

In undergoing amniocentesis I had not incurred disproportionate risks for my son or myself, and I had wanted to facilitate a serene and informed acceptance of his diagnosis. As a Catholic, I never considered abortion an option. Even so, the day I heard my son’s diagnosis and the weeks afterward were among the darkest times of my life. It is hard to remember why that was, now that I have lived through 11 years of a richer, sweeter life that my son has given our entire family, but I recall being utterly devastated at the time. I am glad I was able to get through those dark days while my son was still safe in my womb, rather than right after his birth when he was in the neonatal intensive care unit of the hospital.

Our church appreciates the potential benefits of knowledge in such a situation. Yet it recognizes that the knowledge is not beneficial if sought with a eugenic intention. Most prenatal testing in the United States is offered, accepted and undergone with a eugenic intentionthat is, to see if the test finds anything abnormal. Hearing a diagnosis of a condition like Down Syndrome, most women terminate their pregnancy. One can refuse to terminate it, of course, but to do so is countercultural. For that reason especially, it is supportive and comforting that the church does not condemn the desire of a family to know the probabilities, while it cautions against the temptation to destroy life that such knowing might present.

On stem cell research, the church uses the same logic. It actively encourages and supports research on stem cells obtained from living adults or from umbilical cords, but condemns research on embryonic stem cells, which cannot be obtained without destroying human embryos.

Last September, addressing the participants at an international conference on stem cell research, Pope Benedict XVI said:

[Adult] stem-cell approval and encouragement when it felicitously combines scientific knowledge, the most advanced technology in the biological field and ethics that postulate respect for the human being at every stage of his or her existence. The prospects opened by this new chapter in research are fascinating in themselves, for they give a glimpse of the possible cure of degenerative tissue diseases that subsequently threaten those affected with disability and death.

The pope also explicitly condemned those forms of research that provide for the planned suppression of human beings who already exist, even if they have not yet been born. Research, in such cases, irrespective of efficacious therapeutic results is not truly at the service of humanity.

Recognizing the potential danger of society’s pressing hard against the boundaries of what it chooses to define as life, the church warns us not even to venture down that path. Pope John Paul II had explained in Evangelium Vitae, What is at stake is so important that, from the standpoint of moral obligation, the mere probability that a human person is involved would suffice to justify an absolutely clear prohibition of any intervention aimed at killing a human embryo.

Life on the Line

How does Catholic teaching answer the question, How is deciding for amniocentesis different from deciding for embryonic stem cell research? Just as some people could legitimately disagree with my personal assessment of the relative risks and benefits of amniocentesis, don’t some people legitimately disagree with the church’s assessment of the relative risks and benefits in embryonic stem cell research? I understand the crucial distinction in this way: embryonic stem cell research does not pose a possible or probable risk to the embryos involved. Rather, it destroys the embryo. (The claim last summerthat scientists had developed a way to cultivate stem cells from single cells extracted from embryos without harming the embryosproved to be fraudulent.) That is the essential difference.

If a technology could be developed to extract embryonic stem cells with just a potential risk to the embryo, then the risk analysis would, I think, not be meaningfully different from the analysis that permits a woman to undergo amniocentesis. (Scientists claim this to be the case now with pre-implantation genetic testing of embryos created through in vitro fertilization.)

Yet it is difficult to imagine a scenario under which the extraction technique, even if perfected, could be implemented on a large enough scale to provide the number of stem cells needed for research without leading to the cultivation of embryos for the express purpose of destroying them. There is the eugenic intention. Unless scientists can guarantee a womb for each embryo from whom single cells are safely extracted (which is not currently done in the context of pre-implantation genetic testing), then the protection against deliberate destruction of life afforded by this proposed technique is illusory.

New techniques for obtaining embryonic stem cells that do not destroy the embryos are being aggressively explored. If they can be developed, the church may endorse them, as it endorses adult stem cell research. But until then I am willing to accept a bright-line limit on how far I will let my empathy and hope for a medical cure take meI will not accept the deliberate destruction of embryos.

My experience as a parent and as a Catholic bears on my willingness to accept such a limit. As I see it, the image and likeness of God reflected in every life, including embryonic life, includes conditions like Down Syndrome, autism and Parkinson’s disease. To look for cures that deny the sacredness of all human life is to reject the aspect of God’s image reflected in conditions society deems disabling. The theologian Nancy Eiesland reminds us that the Jesus we worship in our churches is not only the triumphant Christ of the Ascension, but the broken Jesus on the cross, the disabled Jesus.

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