I’ve always held myself out to be pro-choice – that is, I stand behind a woman’s right to have autonomous control over her body and to choose her own reproductive destiny, including safe, legal abortion if she so chooses. How does this position reconcile, however, with the desire to raise awareness about Down syndrome, especially as it pertains to prenatal screenings? Does finding the termination rate in prenatally diagnosed cases of Down syndrome (over 90%) appalling, and having a wish to better educate people about the realities of Down syndrome with the hope of impacting this termination rate make one “selectively pro-choice,” wishy-washy in one’s views, or a hypocrite?
I would argue that no, it does not.
Let’s look at prenatal screenings:
Although amniocentesis has been performed in various manners for over 100 years, it did not become widespread as a method of detecting fetal genetic conditions until the 1980s. The procedure was developed and improved upon by numerous doctors and scientists over the decades as an experimental tool to better understand pregnancy and the effects of certain environmental factors on fetuses. Its development was never demanded by the public; in fact, no form of prenatal screening has ever been demanded by the public until it entered a phase of being marketed to the public. If amniocentesis was being occasionally and selectively performed a century ago, that was certainly before “informed consent,” and it’s safe to assume that women who underwent amniocentesis in the early years and decades probably weren’t presented with a choice about it.
In the 1980s amnio gained widespread popularity as a tool for screening for birth defects – most notably Down syndrome – in older pregnant women (those over 35). Subsequently, more screening methods were developed that were less invasive than amniocentesis (and therefore didn’t carry the risk of fetal harm that amnio carries), but also less accurate. These blood screenings (most notably, AFP, triple screen, quad screen, and first trimester screening) were being offered to all pregnant women, of all ages, by the mid-1990s (although often, as I can attest to by my own experience, they’re not presented as optional, they’re presented as, “Okay, at your next appointment, we’ll be doing your AFP screening.” In truth, this is the case with just about all prenatal procedures – as well as hospital procedures administered during labor and delivery: “Next month we’ll do your glucose tolerance testing,” or “Now we’ll place your IV and get you situated with the fetal monitor,” effectively taking the element of choice out of the picture and making these non-compulsory procedures seem mandatory.) The biggest drawback of the non-invasive blood and ultrasound screenings is the high rate of false-positive results, which usually lead to the more invasive (and risky) amniocentesis anyway.
It should not escape anyone’s attention that there is a reason prenatal screenings are carried out as early in pregnancy as possible: to allow for easier termination, period. If these screenings were undertaken purely with the noble intent of preparing parents for possible outcomes, they could realistically be carried out at 25 or 30 weeks’ gestation, still allowing for plenty of time for the parents to “prepare” themselves.
It would be commendable if prenatal screenings were carried out compassionately, intending only to provide information and an opportunity for preparedness. However, the truth is that prenatal screenings are tools meant to screen out birth defects – meaning, there is a clear bias of these screenings and tests in favor of termination. Stories abound of mothers being given a prenatal diagnosis of Down syndrome and being told, “This can be taken care of quickly and easily. We can schedule your termination this week.” (And using possessive language such as “your” effectively makes it feel like a personal right that should be exercised.) Even when that’s not exactly what parents are told, they are very often painted a very grim picture of life with Down syndrome and left to conclude for themselves that abortion is the most humane option for the baby, the family, and society.
If I had a dollar for every woman who’s told me, “I wouldn’t terminate under any circumstances, but I would just want to know . . . .” Many, many women genuinely can’t fathom ever considering termination of a pregnancy; and yet, why is the termination rate so alarmingly high in prenatally diagnosed cases of Down syndrome? I would venture to guess that a great many of those same women who don’t believe they would ever consider termination also can’t fathom being faced with a doctor telling them that their child will likely never walk, talk, read, or be toilet trained, and who will forever be a burden and a financial drain on the family and the community. Even in this so-called enlightened age, this is still an all too common description of Down syndrome by medical professionals.
It’s very much a self-fulfilling prophecy that we’ve created and continue to nurture: we as a society hold onto outdated images of people with Down syndrome – odd-looking people ambling around in organized groups, unengaged, unable to communicate, perpetually childlike and dependent. These images frighten us on some level, threaten our innate desire for conformity, and so we continue to exclude them from mainstream education and life, marginalizing them, which prevents them from realizing their true potential. And so they largely remain on the fringes, dismissed, and very likely more dependent than necessary and less able than possible – a monster of our own making. Continuing to treat Down syndrome as a condition that should be terminated prenatally also effectively feeds the attitude that people living with Down syndrome are not worthy of compassion, dignity, or respect – let alone life itself. The best way to keep a class of people down is to continue to oppress and marginalize those people.
The truth is that people born now with Down syndrome on the whole do much better health-wise than ever before thanks to medical advances, and when provided with appropriate community supports, inclusion in every aspect of family life, and educational and employment opportunities, they do better socially and academically than ever before in history. Take any one of these things away, and the impact on quality of life is indisputable.
So the truth is, an honest, up-to-date picture of Down syndrome is not widely provided to parents receiving a prenatal diagnosis – or even to those contemplating prenatal screenings to begin with. Further, because people with Down syndrome – and all varieties of disabilities – are still largely excluded and marginalized, the average person does not have any first-hand knowledge or experience with Down syndrome. They likely have vague stereotypes promulgated by society, coupled with bleak predictions from medical care providers they trust, and that’s it.
No wonder the termination rate for prenatally diagnosed cases of Down syndrome is so high.
Back to the original question: can a person be pro-choice and still wish to change perceptions about Down syndrome in the hopes of impacting the termination rate?
While I believe every woman should have the right to terminate a pregnancy, I also believe that such a potentially profound decision is best made with full information. The truth is, the vast majority of women who terminate because of a prenatal diagnosis of Down syndrome wanted to be pregnant – they wanted a child. Unlike early abortions that occur because the woman, for whatever reason (in most cases, an unplanned pregnancy and a lack of resources to raise a child), does not want to be pregnant or to have a child – any child – women who allow their pregnancies to progress to the point of undergoing prenatal screenings are women who actually do want to have a baby – even if it was unplanned. So isn’t it only right and responsible to provide her with honest, current information about the realities of Down syndrome?
And the truth is, this honest information is not likely to be given by medical professionals (despite the recent enactment of the Prenatally and Postnatally Diagnosed Conditions Awareness Act), because it’s not likely that most medical professionals actually have much knowledge about Down syndrome beyond what’s found in text books. It’s going to take families directly touched by Down syndrome, and people with Down syndrome themselves, speaking out and raising awareness. And it’s going to take society allowing them a voice, and not shutting them down and dismissing what they have to say.
That’s my aim. When I talk about our life with Finn, when I post things about Finn and the impact he’s had on me and our family, I do it to provide a picture from our side of the fence. I remain steadfastly pro-choice, but I’m also pro-information and -education, as should everyone in a compassionate, enlightened, and progressive society strive to be.