I have been thinking of writing this post for several months, since both the ACOG and its Canadian equivalent came out in favor of universal prenatal screening for Down Syndrome. Yet I keep hesitating, because I do not want to hurt any woman who has chosen to terminate a pregnancy because of poor prenatal diagnosis, nor anyone who loves a woman who has made such a choice. I have also not had the time to do the kind of exhaustive research and documentation I would prefer to include on such a difficult and complicated issue. But when I agreed to participate in Blog Against Disabilism Day, I could no longer remain silent about the fact that this is a subject very close to my heart as both a feminist and a supporter of disability rights and awareness. So I would like to offer a brief piece simply calling attention to some little known facts about the abortion of disabled fetuses. Before I begin, let me affirm that:
1) I am not interested in criminalizing women who choose abortion, whether because of disability or any other reason. I would like to see abortions decrease by feminist reforms of our massively unjust society, which places virtually all the burden of childraising on women; by better theology of sexuality, including well-thought out sex education and a wider variety of family planning options; and by education and empowerment of women to better prevent the many abortions that are not freely chosen but coerced or pressured by male partners, parents, medical professionals, and economic injustice.
2) I am not interested in shaming women who choose abortion, whether because of disability or any other reason, even as I grieve the developing lives lost to the procedure and acknowledge with gratitude that I have been fortunate enough to never seriously face such a dilemma. I can completely understand why that decision may seem to be, or actually be given present injustices, a tragic measure of self-defense of one's own life, physical and emotional health, the ability to parent other children well, and so on. If you have terminated a pregnancy and found it a painful experience I am sorry for your ordeal and for the stigma often placed on you by Christians and some pro-life activists; I pray you will find healing and consolation; and I believe that God and the spirit of your baby cherish and delight in you and watch over and bless you always.
As a pro-life feminist, I consider the frequent abortions in our culture a symptom of sexism, and something which often hurts both women and children. Abortion for poor prenatal diagnosis is a powerful example; it is accepted as obviously morally justified by almost everyone, and between 80 and 90% of Down Syndrome fetuses are aborted. (The Canadian OB-GYN group was more honest in identifying this as the major goal of increased screening, even saying it would be worth more accidental miscarriages of healthy babies through amnio to prevent the birth of those with DS). The message about the (non)worth of disabled people is clear and frightening, and has been protested by many disability activists, including some who are pro-choice overall.
Yet women who abort for this reason often suffer grave emotional consequences. This is because these pregnancies are frequently planned and very much wanted, sometimes the only child a woman will conceive after many years and countless financial burdens of infertility treatment. It is also because due to the present realities of prenatal testing these are second, sometimes third, trimester abortions of beautifully developed babies near or past viability. The mother has frequently felt movement, has almost universally seen the fetus through ultrasound and learned its sex through amniocentesis, transforming it (if names have been chosen) to "Sarah" or "Joshua." The procedure, which ends the dilemma for the doctor, and perhaps for some fathers, does not end the experience for the mother, who must go through the physical and emotional ordeal of surgery or induced premature labor as well as every day remaining until her due date and beyond.
Like other abortions, there is a rhetoric of "free choice" on the woman's part, and in some cases this is true. Yet women have told of being informed of a diagnosis and, in the same breath, that their termination has been scheduled within a few days or even immediately, on another floor of the hospital. For many doctors, the overriding factors in such a case are 1) the desire to produce a "perfect" baby and 2) the desire to avoid "wrongful birth" litigation. Few women are given the information that there are waiting lists of parents wishing to adopt both Down Syndrome and spina bifida babies, and foster homes willing to do long term care while parents discern their options and explore resources available to them. Since fewer and fewer Down Syndrome children are being born, many people have never personally interacted with them or their families and find them alien or repulsive. The inadequate health care and social service system in America means that receiving this diagnosis raises fears of a lifetime financial and caregiving burden for both the parents and any other typical children. And, in most cases, the major burden of caregiving will fall on the woman--perhaps as a single mother, if she refuses a termination preferred by her husband. Even Rayna Rapp, a strongly pro-choice scholar who terminated a pregnancy due to a Down's diagnosis, and has written an important work on the topic, admits that the structure of the prenatal testing and counseling system is strongly biased toward termination.
There is a powerful website called A Heartbreaking Choice which contains personal stories and memorial tributes from mothers and fathers who ended pregnancies due to PPD, and clearly love the babies they chose not to birth. (The preferred term for such terminations on the website is "heartbreaking choice" or "AHC" for short). There is also a closed e-group for those who have made such a choice and are seeking support. It is impossible to read these stories and judge those who have written them. But in poring over them I became concerned with some of the rhetoric I saw repeated frequently. There was much emphasis on the fact that the babies were loved and that this was in fact the sole or primary reason that they were aborted, sending them to heaven to be happy and free of pain and discrimination. Again, disabled lives are apparently painted as not worth living. There was also a motif of self-sacrifice, even heroism, on the part of the parents, especially the mother: "we are suffering so s/he doesn't have to." I can see how important it would be to claim one's real and loving parenthood in such a difficult situation, given the kind of judgement that can be imposed, but this strong emphasis strikes me as dangerous--not just because of what it says about people with disabilities, but because of the implicit pressure placed on women with PPD to make the same "heartbreaking choice." Women have always been expected to sacrifice themselves for their male partners and children, and these stories make me worry that this expectation is being revivified to help make this choice even less free.
One story that lingers with me is by "Michelle." She describes being torn apart by a decision that went against her previous values, and pressured to terminate by a verbally abusive husband who consented to unprotected sex, then blamed her for both the conception and the disability. She ultimately claims her choice as the most loving for the baby, the two living sons, the husband and herself given the social and relational realities she faced. Yet her ongoing anguish breaks my heart. I worry that the present easy acceptance of prenatal testing and abortion for PPD masks the horrible cruelty and injustice, for both disabled people and women, of a society that leaves her Down Syndrome child dead, and her "the only one crying."
In the end, I also acted out of love for myself. I freed myself of the heartbreak of caring for a disabled child. How do I deal with this? Within the waking hours of each day I am alternately sorry that I never gave my little son a chance or grateful for the medical procedures that freed us all. I am relieved that I am not the mother of a disabled child. Yet, at all times I scream inside with the agony of letting my third son go. I lie awake at night when everyone else is asleep, crying and pondering my choice. This is my comfort: I am the only one crying.
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