As we get older, we often tend to situate our lives in and around historical events, which serve as place markers and give us some frame of reference, especially when the events are personally salient. Because of my field and my personal experience, I see my life as demarcated in part by events in the history of disability in this country. For example, my son Tommy (who has Down syndrome) was born in 2007, the watershed year in which prenatal testing for chromosomal disabilities was recommended for all pregnant women by the American College of Obstetricians and Gynecologists and which also heralded unprecedented technological advances in prenatal screening and diagnosis.
I was born 42 years earlier, in July of 1965. In December of that same year, a professor of education named Burton Blatt, well respected in the field of disability, asked his friend Fred Kaplan to accompany him on a tour inside four institutions for persons with cognitive disabilities in four eastern states. Kaplan agreed and went along with a camera hidden in his clothes. The book which resulted from this, A Christmas in Purgatory, is the most scathing indictment of institutionalization in the US that you will ever read, and it marked the tipping point at which the field could no longer ignore or tolerate this treatment of individuals with disabilities.
Blatt’s introduction begins, “There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.” It continues, “It is difficult for ‘uninvolved’ people to believe that in our country, today, human beings are being treated less humanely, with less care, and under more deplorable conditions than animals.” The grainy black and white photos capture the utter physical neglect of humans living in filth and overcrowding, but even more so the heart-rending social desolation of those deprived of the warmth of ordinary human interactions. Kaplan’s photos are accompanied by Blatt’s commentary, and captioned by various Biblical and literary quotes which move this work beyond a merely factual exposé of deplorable conditions to a haunting meditation on man’s inhumanity to man. It is difficult to fully convey the effect here, but Blatt remarked later that what he saw is the “stuff of which nightmares are made.”
This photo-essay was distributed widely to universities, professors, advocates for the disabled and parents all over the US. Blatt also used it as part of his testimony to the Massachusetts state legislature in 1966 on the issue of legislative reform of state institutions. Indeed, Blatt was hoping it would lead to widespread significant reform in our treatment of those with disabilities—that it would be an occasion, as he put it, “for all men of good will from all walks of life and all professions to sit down at the planning table and seek viable solutions to the issues.” This hope that Blatt held out for reform despite the horrors he witnessed is striking, and it is explained in part by the final chapter of his book, where he describes a fifth institution called the “Seaside,” which was clean and orderly, where children were educated and adults engaged in meaningful work and recreation outside of the hospital. Blatt refers to this as the “Promised Land” and proposes it as a model, not only of what those with disabilities are capable of with appropriate care—but also of the type of humanity we as their caretakers are capable of.
Blatt captured this feeling of optimism by quoting another colleague:
The mentally retarded [pardon the language—I use this term as it was used historically—in a clinical and not derogatory sense] . . . The mentally retarded continue to be the least of the last minority in the United States—the least understood, the most different, the least appreciated. Still it seems probable that, in the words of Voltaire, “Their time has come,” and, in spite of the ignorance and general indifference of the public, the lot of the retarded is looking upward.
It would appear that Blatt’s hope was well-founded. His work and that of others in the field were the impetus for the deinstitutionalization movement and more generally helped advance the disability rights movement. Beginning in the 1960’s, a number of legislative measures were enacted, culminating in 1990 with the Americans with Disabilities Act, or ADA, and the case law that followed it. It is worth noting that the language and policies of the ADA and the court decisions surrounding it were not only aimed at ending discrimination, but at changing societal attitudes toward those with disabilities.
If the media is an accurate barometer of such attitudes, it would seem that this legislation has been wildly successful. Actors with Down syndrome have been stars of popular television series, children with disabilities are regularly featured in toy and clothing ads, and last year, we seem to have reached the pinnacle of acceptance when it was announced that the 2018 Gerber baby has Down syndrome. It would seem, indeed, that the future is looking up.
But let me relate to you something else that Burton Blatt wrote. This was from a companion essay—an editorial he wrote for his colleagues at the time that Christmas in Purgatory came out. Blatt began his essay talking about what he had learned in working with those with cognitive disabilities, and then tried to explain how the atrocity of institutionalization could take place:
There is a dark side of every mirror, a side beyond inspection because it is without thought. And while the optimism and pride—the light—of our lives is for the gains made in civil rights, for our achievements in mental health, for the concepts of the Declaration of Independence and the Constitution, [he is talking about all of the achievements of the 60’s] surely a dark side in the evolution of our civilization in this mid-20th Century must be reserved for the deep unremitting, unrewarding lives of drudgery and pain we inflict upon our institutionalized brothers who are called severely mentally retarded.
Over 50 years after this was written, I believe that despite all the gains we have made in the field of disability, there still exists today a dark side of the mirror, and this is the selective abortion that happens after a diagnosis of disability in utero. I am sure most of you have heard the statistics: in this country, although we do not keep good data on this, somewhere between 70% and 90% of infants with Down syndrome are aborted after a definitive diagnosis, for a total of about 3000 infants with Down syndrome each year. Although the data is even less available for abortion rates of other disabilities, they are thought to be similar to the abortion rates for Down syndrome.
If the Guttmacher statistics are accurate as to the number of women who cite health problems of the fetus as primary reason for abortion, we would estimate that at least 27,000 children with some type of health problem or disability are aborted each year in the US. In European countries and others with progressive abortion laws, such as Western Australia and China, abortion rates tend to be even higher—consistently 90% or greater. In countries such as Denmark and Iceland, prenatal diagnosis has been carried to its logical conclusion with the achievement of an almost zero birth rate of children with Down syndrome through abortion. This can hardly seem to be what Blatt had in mind when he quoted that the future of those with cognitive disabilities is looking up.
When we look at the long struggle for rights of those with disabilities that arose from horrific maltreatment, when we consider the strong language and policies of disabilities rights legislation, it is almost incomprehensible to consider that we are at a point when we have moved from denying individuals with disabilities the right to certain aspects of society, i.e., normal living conditions, family life, education, etc., to denying them the right to live at all—the ultimate form of discrimination. How do we reconcile the rights of and positive attitudes towards children with disabilities after birth with the testing for and almost wholesale destruction of children with disabilities before they are born?
In his dark side of the mirror metaphor, Blatt evokes the idea that evil can flourish because it is hidden, on the other side of the mirror, “beyond inspection” he says. The evils of institutionalization were hidden behind physical walls, inside dark and mostly decrepit buildings. In part, the reason that selective abortion of children with disabilities can exist today is that it is hidden, in plain sight as it were, behind the guise of medicine.
This has occurred to some extent because, as much as disability rights advocates have adopted the language and strategies of the civil rights and women’s rights movements, there is a fundamental difference. With disability, there is in most cases some undesirable trait, which would be better off treated or fixed. This does not mean that the lives of those with disabilities have less value, nor deny that the disability could have contributed in positive ways to the person’s development. Indeed, my son’s extra 21st chromosome is in every cell of his body—it affects his appearance, behavior and personality such that it is impossible for us to imagine what a “cure” would look like for him, our love for him is so bound up with all of these characteristics.
And yet we recognize that we would give him better health if we could, because this extra chromosome has caused some pathologies—a heart defect, feeding problems, visual problems, learning difficulties—which make it more difficult for him to navigate the world. We acknowledge a tension here which is not present, for example, in the struggle for racial equality. It is a tension between acknowledging the dignity and value of the person on one hand—and the person in his entirety—and a sense of “but wouldn’t it be better if the disability did not exist” on the other. This tension, I think, explains in part how discrimination has come to flourish in obstetric medicine. The convergence of breakthroughs in genetic testing in the 50’s and 60’s followed by the legalization of abortion in the 70’s allowed health care to turn “wouldn’t it be better if the disability did not exist” into “wouldn’t it be better if the person with the disability did not exist?”
Ultimately, then, obstetrics has taken a good—eliminating a disability or serious medical problem—and distorted it into something evil: eliminating a person. And it is perhaps the fact that this evil continues to masquerade as a good that allows so many well-meaning physicians to participate in it and actively encourage it without (one hopes) realizing the full monstrosity of the act. And it allows parents who would not abort their children in almost any other circumstance to overwhelmingly choose this option.
So the discrimination inherent in selective abortion (offered by doctors, accepted by parents) thrives in part because it poses as health care. But public policy makers and bioethicists are not unaware of the ethical problems inherent in killing patients to treat a disease. However, rather than dealing with this ethical dilemma head-on by addressing, perhaps, whether it is ethical to screen for diseases in utero for which there are no cures, they have instead performed a sort of bioethical sleight of hand. In what amounts to little more than a parlor trick, they have accomplished this by switching the stated goal of health care screening programs from treatment and prevention of disease, to the promotion of choice and autonomy—and then by further codifying this change in medical guidelines, e.g., the 2008 World Health Organization revised guidelines for screening programs. And so, when the State of California came under fire a few years ago for its state-sponsored prenatal screening program (the only one of its kind in the US), it knew better than to defend it in terms of “improving health,” which could carry eugenic overtones, but instead argued that it ensured “options and choices” for parents.
There is a final, sinister twist in which the discriminatory practice of selective abortion, offered as health care but defended in the name of autonomy, is further hidden behind the evil of abortion itself. The offense against human life presented by abortion is so grave that sometimes we fail to see that other injustices can coexist with this most grievous one. This is beginning to change—for example, protests of the disposal of human infant remains in trash bins, of the selling of fetal body parts, of unsafe and unsanitary conditions at abortion clinics. These are all ways in which we recognize that abortion has overstepped the unsavory bounds of its legal limits, rather like a wild animal trying to escape its cage.
Disability selective abortion is another way in which the practice of abortion has gone far beyond the original intent and limits of Roe v. Wade. In a case involving a late-term abortion ban before the US Supreme Court in 2013, a friend of the court brief filed on behalf of those with disabilities stated:
This Court has never endorsed a right to abort children only because they have been detected to have a disability. In Planned Parenthood v. Casey . . . this Court repeatedly premised its reaffirmation of abortion rights in terms of the right to terminate an unintended pregnancy
Roe v. Wade, as gravely wrong as it was, was never intended to open the door to choosing one particular child over another, to discriminate on the basis of physical or cognitive differences.
And so in addition to the general harms done by abortion, there are additional harms done here. Primarily, the injustice of each act in which a child is denied life because of a disability—certainly. But this type of abortion also has consequences for the wider community of individuals with disabilities. As one father of a daughter with Down syndrome put it, these abortions say to our children “Your life is so different that it merits widespread testing to single out those like you for elimination.” This is known as the expressivist argument, because abortion expresses something about disability, it makes the clear statement that the lives of these children are to be avoided at great cost. In fact, the state of California alone spends at least $118 million annually on prenatal screening.
As we talk about the way in which discrimination of individuals with disabilities both hides behind abortion in a sense, and is also furthered by this act, it is worth pointing out that the legalization of abortion and even more so the deep political polarization it produced has had the effect of fracturing disability rights groups.
The assault on the dignity and very lives of persons with disabilities went relatively unaddressed by the field of disability rights for quite some time—perhaps because prenatal testing was confined to women over 35 until recently (2007), perhaps because the field was working to secure basic care for those already born. But whatever the reason, we did not even see the first scholarly treatment of abortion as a disability rights issue until the year 2000, over 25 years after Roe v. Wade. By the time the field recognized that abortion may be a serious disability rights issue, I believe it was already too late—deeply help convictions about abortion were so thoroughly entrenched that many advocates in this field were blinded to this deeply discriminatory injustice.
This split in the field of disability rights on the issue of abortion has rendered groups which should be powerful advocates for infants with disabilities largely ineffectual. The National Down syndrome Society, for example, adamantly refuses to take a position on abortion. And so when senior editor Ruth Marcus wrote a gleefully discriminatory piece in the Washington Post last year, admitting she would have aborted a child with Down syndrome, the leading US advocacy group for persons with Down syndrome remained silent. The ARC, a longtime advocacy group, is vehemently pro-choice, so much so that I found myself on the opposite side of a debate in an Indiana Senate subcommittee hearing with a local ARC representative, who argued against a ban on disability-selective abortions on the grounds of the suffering her clients experienced. At the same time, she requested that the use of the term “retarded” be struck from the proposed legislation, which led a legal scholar and friend of mine to remark, “Let’s kill those with disabilities, but by God, let’s be nice about it.” Certainly, we have reached a crisis point in our advocacy for those with disabilities when we cannot recognize the moral difference between calling an infant with Down syndrome names and killing her.
We are in a more difficult place with respect to disabilities than Burton Blatt was 50 years ago. Prenatal testing and abortion are seen as routine healthcare. The right to abortion is so thoroughly enshrined in the hearts and minds of much of the American public that it is difficult to argue that its further use as a tool for discrimination is doubly reprehensible. Disability advocates, like the general American public, are themselves deeply divided on this issue. The photo-essay that Blatt found so effective in his day has not proven a useful tool in fighting mainstream abortion (certainly we are wary of using graphic pictures of typical abortions) and photos would likely be no help in this case, either.
But Blatt found hope amidst the evils of institutionalization, he uses the Seaside as the model institution, as an example of this hope. But true hope for him came from two other sources. First, the glimpse he had there, in what he called the “Promised Land” of the potential of the caretakers of those with disabilities (all of us) to treat these individuals with compassion and dignity. Second, in his own unwavering belief in the potential of those with cognitive disabilities. And so, too, I see similar sources of hope amidst the ruins of prenatal medicine.
Prenatal testing has proven so devastating for infants with disabilities that it is tempting to abandon it all together. But I have seen glimpses of the potential of this field for good, both historically and today. For example, one of the most fascinating and little-told stories of prenatal testing is that in its infancy, much testing was oriented towards the health of the child. Three of the leading pioneers in the major diagnostic tools were staunch advocates for the dignified treatment of unborn children.
Many are familiar with Jerome Lejeune, who discovered the chromosomal basis of Down syndrome. Not only was he a brilliant scientist, but when he realized that his discovery was going to be used primarily to diagnose and then abort children with Down syndrome, he spent the rest of his life fighting for the lives of the children he was trying to cure. Indeed, he was convinced that Down syndrome ought to be, and could be, treated—ideally very early on, even in utero.
You may not be as familiar with the life of Ian Donald, a Scottish OB who developed the fetal ultrasound machine with the intent of providing better assessment and care of his young patients. He also vehemently opposed the 1967 Abortion Act in the UK. Another, Dr. Alfred William Liley, perfected the technique of amniocentesis not only for diagnosis, but also for treatment of Rh incompatibility—he developed a procedure to administer blood transfusions to children in the womb. He later founded The Society for Protection of the Unborn Child in 1970 in New Zealand. These men were outstanding scientists but perfected diagnostic tools because they were clinicians first, who cared deeply about their unborn patients, and were looking for ways to treat them. 50 years later, I think we are beginning to see some interest in pursuing this matter again. Most of us are familiar with the photos of the first surgery for spina bifida in utero which occurred 20 years ago. As groundbreaking as this was, it did not lead, as one might have hoped, to a general consideration of infants diagnosed with congenital anomalies before birth as patients.
In the past eight years or so, I have seen this begin to change. In 2011, for example, some clinical trials began to explore the efficacy of treatment of some of the cognitive deficits associated with Down syndrome. A researcher who is now at the NIH, Dr. Diana Bianchi, extended this research to examine treatment possibilities for infants with Down syndrome in utero, and sees treatment as a viable alternative to abortion. Her lab has been experimenting with pharmacological therapies to relieve the oxidative stress seen in the brains of infants with Down syndrome as early as the second trimester, and believed to be related to cognitive functioning. This kind of research points to the hope that prenatally diagnosed infants with disabilities can be treated with the dignity accorded to any other patient. And it suggests that it is still possible to wake the sleeping giant which is the moral imagination of physicians in the field of perinatal medicine—an imagination we have seen before in those like Jerome Lejeune. What I am going to say next will sound paradoxical, because I just described how one source of hope lies in physicians realizing the true potential of prenatal diagnosis for the compassionate care of infants with disabilities.
The second reason I have for hope is quite the opposite—I also see ever-increasing signs that the field has begun to recognize the limitations of prenatal diagnosis. Let me elaborate. We need to understand what prenatal diagnosis can do—gather information for compassionate care and treatment of the most vulnerable of patients. But we also need to acknowledge what it cannot do. Prenatal tests can assess the details of our raw genetic material with ever increasing precision, but it is entirely outside the province of this field to predict the human heart and soul, to predict human happiness or suffering based on the structure of our DNA. And the physician certainly has no authority for making the most radical claim of all: that a prenatal test will reveal whether it be better for children to die rather than live with certain kinds of disability.
We live in an era of evidence-based medicine. Slowly evidence is building to refute the claim that certain genotypes are more suited to human happiness and flourishing than others. There is of course much anecdotal evidence, countless families have testified to the goodness of their lives with their loved ones with a disability. In the case of Down syndrome though, Harvard-trained physician Brian Skotko has worked to compile empirical evidence that confirms this: large sample studies show that there are more positive effects than negative of living with a child with Down syndrome, and the vast majority—actually over 90%—of individuals with Down syndrome and their parents and other family members are happy with their lives.
Even in the most serious cases of life-limiting disabilities, research shows that parents overwhelmingly choose perinatal hospice, a program which allows them to lovingly carry these fragile infants to term, as an alternative to abortion. These same parents, while certainly grieving the death of their children, report that these lives were sources of “gift” and “joy,” and researchers report that they emerge from this experience with greater psychological health and well-being than their counterparts who terminated similar pregnancies. The reason for this, that researchers are finding not just suffering, but happiness, joy even, amidst lives which prenatal testing would predict would be too burdensome to bear, stem from the most obvious limitation of prenatal testing: it cannot, of course, measure the basic human capacity to love and be loved. The great irony here is that while bioethicists and health care policy makers are loudly justifying discriminatory abortions in the name of autonomy and independence, families of children with disabilities who disregard medical advice and carry their children to term, are quietly discovering the deeper truth that we are made for interdependence and community—that we can find happiness in giving our lives to another.
Like Blatt, then, despite the darkness of this side of the mirror, I am hopeful. Hopeful, certainly, that perinatal medicine can recover its potential for good—for healing and compassionate treatment of the most vulnerable of lives under its care. But even more so, like Blatt, I am hopeful because of the potential of those with disabilities themselves. I believe that even without treatment, these children, with the most unlikely arrangements of genetic material, are sources of great joy. And it is these individuals, like my son, that give me great hope that we have not lost the battle, that we can say that the future of those with disabilities is indeed looking up.
Editorial Note: Mary O’Callaghan is a University Life Fellow who works with the Notre Dame Office of Human Dignity & Life Initiatives. A version of this essay, “Disability and Prenatal Diagnosis,” was originally delivered during a Life Fellows Meeting hosted by the Notre Dame Office of Human Dignity & Life Initiatives. Please take a look at the Office’s resources page.
Featured Image: Nikolay Argunov, Portrait of Praskovia Kovalyova, 1803; Source: Wikimedia Commons, PD-Old-100.