A recent CBS news report on the near eradication of Down syndrome in Iceland has caused quite a stir in the Down syndrome community, for good reason. (Please, please, if you haven’t yet, watch the full segment before reading this or any other commentary.) I have thought about this story a lot over the past couple days.
First, I’d like to address the unfortunate backlash against CBS. Within hours of the story’s initial airing, several political figures posted sensationalized commentary accusing CBS of “celebrating” Iceland’s near-elimination of Down syndrome. I understand that mistrust of mainstream news media is at an all-time high, but it needs to be said: The CBS report did exactly what journalism is supposed to do, which is examine an important and complex issue as objectively as possible. CBS allowed people of various perspectives to present their views and experiences without judgement. Certainly, there is more I wish could have been said about the issue, but CBS did not take sides in its coverage. While we can all think of many examples of journalistic failures, I don’t believe this is one of them.
So, let’s agree to set aside the misplaced outrage. This piece was an important examination of a trend that has been growing across Europe. In Iceland, the rate of termination for pregnancies that test positive for Down syndrome is 100 percent; in many other European nations, it is nearly as high. This is information we need to know, and it needs to be the starting point for some soul searching and difficult conversation here in the U.S. Let’s focus on the actual issue at stake, which is: how do we as a society view and value people with Down syndrome?
This is a hard conversation for people in the Down syndrome community, because it is so intensely personal. When we hear that 100 percent of people in Iceland choose not to give birth to babies with Down syndrome, we hear them telling us that our children are not worthy of life. How can any parent not react to that? Of course it makes us angry and terribly sad. We feel the tremendous loss of the lives those children could have lived and the contributions they could have made to their families and country.
My mind also went to the two or three children who are born with Down syndrome each year in Iceland due to missed prenatal diagnoses, and what it must be like for them and their families. They will navigate their experiences without the support of a local network of other families like theirs. If Down syndrome has mostly disappeared, what type of public services will be available to support these kids’ development and independence as they grow? Who will pressure schools and other public and private organizations to make sure kids with Down syndrome are fully included with their peers?
The situation becomes self-perpetuating. With so few children with Down syndrome growing up in Iceland (and across Europe), the lack of visibility will foster further ignorance and fear. The few children who are born with Down syndrome will face shrinking opportunities. All of this makes it even harder for families to choose differently when presented with a prenatal diagnosis.
This is relevant to those of us in the U.S. because we have to grapple in our own society with the values we hold. Do we believe the lives of people with Down syndrome are worthwhile? Do we believe people with Down syndrome contribute to our society and are worthy of the medical care and supports they need? Do we believe in the innate value and dignity of every person, or do we believe that value is tied to ability and achievement?
I have always wondered what would happen if parents expecting typically developing children were faced with a scenario like the one parents of children with prenatal diagnoses face. What if early in their pregnancies, all families were met by a solemn-faced doctor informing them of all the risks and hardships their child could face and all the ways the parents’ lives would become more difficult? We often act as if the lack of a diagnosis is a guarantee of a “normal” life. The truth is far more complicated.
Most typical newborns are wrapped in an invisible cloak of infinite possibility. Parents dream of the wide-open potential futures for their tiny child. As time progresses, those possibilities by necessity narrow. There is loss along the way. We make choices for our children, and as they grow, they make choices for themselves. Circumstances shape reality. Messy uncertainty and complication is a fundamental part of the human experience. When we begin our path as parents, we take on the near certainty of heartache along the way. We do our best to protect, guide and shape our children and then hope and trust they will come out right in the end. We pray they find purpose and happiness. Through it all, love makes the times of pain more than worthwhile.
For parents of a child with Down syndrome, their precious newborn is missing the invisible cloak. At the moment of diagnosis, infinite possibilities suddenly contract. Those wide-open dreams, rather than narrowing gradually with time, are shattered in a moment. The loss is sudden and jarring. There is a grieving process. But the beauty of that experience is that as those parents hold their new child and watch that baby grow and learn and become, love heals the grief. Often, dreams we thought were broken are rebuilt. They may look different in their new form, but they are beautiful in their own right. New possibilities open, and new paths present themselves. And in the process, we find that while there will always be heartache in this process, there are other griefs we are spared. And always, always, love makes the times of pain more than worthwhile.
This is what I wish I could tell every frightened mother sitting in an office across from a solemn doctor, barely hearing the words “Down syndrome.” I want to tell her, “There will always be heartache in parenting. There are risks and hardships with every child. Your heartache comes now, but joy comes in the morning, if you let it. Love will make the times of pain more than worthwhile.”
This is the message I know so many organizations are attempting to spread. There are global groups working worldwide to educate medical providers, genetic counselors and families and to help them have a more balanced understanding of Down syndrome and what it means for families. U.S organizations are doing similar work here at home. There are no regulations in the U.S. around prenatal testing and the information given to parents. Many providers are operating on woefully outdated and inaccurate information. Here are a few facts from the Global Down Syndrome Foundation that I found interesting:
- The most current statistics suggest that in the U.S., 67 percent of pregnant women who receive a Down syndrome diagnosis through amniocentesis choose to terminate. However, more than 95 percent of pregnant women do not choose to have an amniocentesis.
- Studies show that most families of children with Down syndrome are stable and happy, and siblings often demonstrate increased levels of empathy and compassion. One major study showed that the divorce rate for parents of children with Down syndrome is lower than the national average.
- I’ve mentioned this before, but it bears repeating that the average life span of a person with Down syndrome today is nearly 60 years. (Compare that to 28 in the 1980s.)
- The vast majority of children with Down syndrome grow up with their families at home and are included in their local public schools. Most graduate from high school, and increasing numbers are pursing college or vocational training.
- A study referenced by the National Down Syndrome Congress found that older children, teens and adults with Down syndrome report leading happy and fulfilling lives.¹
So, what does all this mean? It means that I will continue to share our family’s story with the world, because the world needs to see people rather than an abstract diagnosis. It means that our family will continue to help raise funds for organizations that are doing the vital work of changing public perceptions of Down syndrome and educating providers so that families grappling with a diagnosis have accurate and balanced information.²
It also means that I expect politicians who score political points by condemning the Iceland story to back that up with policies that increase opportunities for people with Down syndrome here in the U.S. That means fully funding critical Medicaid programs and supporting and fully funding inclusive education. It means increasing access to postsecondary education and broadening employment options for people with intellectual disabilities. It means fostering an environment of respect, where every person is valued.
In the meantime, I plead for compassion. Families struggling with the decision of how to cope with a prenatal diagnosis are not setting out to establish a national eugenics program. Most are frightened and vulnerable, under pressure to make a decision quickly with limited information. Many of them truly are considering the best interests of their child as best they can. Compassion and slowness to judgement are not only best, they are required for those of us who follow Christ.
The response in the Down syndrome community to the Iceland story has emphasized an important truth: people who know, know how important the contributions of people with Down syndrome are to our families and the world. Help us celebrate Down syndrome, and you are helping us make the world a better place.
¹Skotko, B.G., Levine, S.P., & Goldstein, R. (2011). Self-perception from people with Down syndrome. American Journal of Medical Genetics. Part A, 0(10), 2360-2369. http://doi.org/10.1002/ajmg.a.34235
²If you are interested in joining us in supporting organizations working to make the world a more welcoming place for people with Down syndrome, here are some links:
Global Down Syndrome Foundation (Their statement on the Iceland story is worth a read.)
National Down Syndrome Society
National Down Syndrome Congress (Another excellent response to the Iceland story)
Down Syndrome Association of Middle Tennessee (our fantastic local organization)
GiGi’s Playhouse Nashville (our local Down syndrome achievement center)
GiGi’s Playhouse, Inc. (global headquarters for Down syndrome achievement centers)