I was headed to a wedding out of town last week, so I asked my online friend Stephanie Meredith to offer a guest post about resources for women with a prenatal diagnosis of Down syndrome. Stephanie is the author of the booklet created by Lettercase.org, which was prepared with assistance from representatives of both the American College of Obstetricians and Gynecologists (ACOG) and the National Down Syndrome Society (NDSS) (somewhat strange bedfellows). As a result, the Lettercase booklet is a resource that doctors actually use when offering a prenatal diagnosis of Down syndrome. It has recently become available online for free, and I wanted readers to know about the resource. I didn’t expect any controversy.
But. It turns out there’s a debate within the Down syndrome community about whether or not those of us with children with Down syndrome should allow abortion into the conversation surrounding prenatal diagnosis, and I thought the conversation that ensued via comments was worth capturing in condensed form here:
Mike Sullivan wrote:
If the Down syndrome community wants to be treated as equals, then we need to say that a prenatal diagnosis of Down syndrome is not a valid reason for taking the life of another human being. That is why we shouldn’t endorse resources that mention abortion as an option following a diagnosis. The current status of the law doesn’t mean that we shouldn’t advocate for our community to free from discrimination through birth prevention programmes. This is a social justice issue for our community and we need to oppose eugenics . . .
Of course, if the Lettercase booklet didn’t address the option of abortion, it would not be endorsed by ACOG, and many patients who are considering terminating a pregnancy with a prenatal diagnosis of DS would not see the up-to-date information about Down syndrome provided through the booklet. As Mark Leach commented,
No other resource has received the amount of support and recognition from professional medical societies than the Lettercase booklets, and this is precisely because of what information it shares. Medical providers are the gatekeepers of information about Down syndrome . . . The support of the medical leadership allows medical professionals to then provide these materials to their patients, which is significant given that studies show that otherwise, physicians more often than not do not provide educational materials about Down syndrome with a diagnosis. Indeed, the Lettercase booklets are beautiful and the images and the information that is shared is having a positive impact on both medical providers while also being the kind of information mothers say they want to receive.
As the Executive Director of the Down Syndrome Guild of Greater Kansas City I receive phone calls regularly from prenatally diagnosed parents who are in the decision making process. It is not my role to pressure them to continue a pregnancy or to tell them they have only two options (parenting or making an adoption plan) when they in fact have three options. It is my role to provide them accurate and up to date information, offer to match them with a family to learn more and to answer any questions they may have.
She goes on to provide a current story of a doctor who called her looking for exactly this type of information, which, due to Lettercase’s booklet, she was able to provide.
Nancy Iannone, of downsyndromepregnancy.org (another wonderful resource for women facing a prenatal diagnosis and for their friends and families) also offers a personal perspective in which she defends the Lettercase booklet:
By acknowledging the status of that reader where they are (not where someone else may want them to be), and preparing them for the perhaps unforeseen difficulties involved in termination, the reader is both respected and the information provided is much more credible. It is all about that audience – that reader – that patient on the table or in the office.
Many of us have concerns about the future in this new age, about the place for people with Down syndrome, about great question of ethics, morality, discrimination. But as someone who was on that table, and who has talked to so many during that critical time, those patients do not care about these bigger questions. Bringing them to the discussion with that patient – either directly or indirectly – will make us alienate those readers. They are concerned about their futures, their child, their family, their choice – giving accurate information about Down syndrome which is audience-appropriate is a challenge which “Understanding a Down Syndrome Diagnosis” meets both successfully and beautifully.
If the Down syndrome community acknowledges the option of abortion when faced with a prenatal diagnosis of Down syndrome, it becomes able to play a role in counseling women about their options. On the other hand, it may unwittingly play into negative assumptions about Down syndrome as a result. Is abortion of a fetus with Down syndrome is an act of discrimination or a realistic option for women facing a prenatal diagnosis?
Again, I’ll be writing more about these topics in my forthcoming ebook for Patheos Press, What Everyone Should Know About Prenatal Testing.