Today was the 7th annual World Down Syndrome Day, and a post from Amy Julia Becker has me thinking about the relationship between our faith communities and those affected by Down syndrome. Several incidences have brought it the forefront of my thinking lately, which has caused me to realize that I’m very conflicted about the tough decisions parents-to-be are required to make.
Since the late 1960’s, in utero testing has been used to determine chromosomal abnormalities like trisomy 21 (a third copy of chromosome 21 – the most common cause of Down syndrome). With that testing comes an enormous ethical decision for parents who learn that their child will face extreme difficulties throughout their life. Most are probably aware of the developmental challenges and physical abnormalities, but the health risks for those with Down Syndrome also include thyroid disorders, hearing loss, gastrointestinal diseases, and a 50% rate of both congenital heart disease and epilepsy.
The question then presented to potential parents are questions of quality of life, the capacity for a parent to care for their child with Down syndrome (physically, financially and emotionally), and the inevitable burden on others. For these reasons and more, studies show that the abortion rate after parents learn of chromosomal abnormalities may be as high as 90% in the US, and similar numbers can be found across the globe in developed countries.
Sarah Palin and Rick Santorum have made the choice of the ten percenters. The decision is a testament to their faith, and unfortunately, they have each made that clear by politicizing their decision, Santorum even going as far as making it a platform to end paid-for prenatal testing if elected. Even though this is a terrible idea (here’s why), their commitment to their faith in the face of exceptional adversity is what the conscientious objective is all about.
On the other side of the spectrum, Christian Post reported last week that a jury in Portland, Oregon awarded a couple $2.9 million for a wrongful birth case. Prenatal tests showed no chromosomal abnormalities, yet their baby was born with Down Syndrome. They essentially sued their doctor for improperly admitting the tests (keep in mind that no current prenatal testing is 100% accurate) which resulted in faulty test readings, and claiming that they would have aborted the fetus, they won. I’m at a loss for words with the amount of brokenness of our society to allow this situation.
These examples bring to our attention the ethical decisions and complications that arise with Down syndrome testing, but as most of us our outsiders, it doesn’t give us a sense for how we are to respond to those in need.
Capacity of our Christian Community
It is important that we understand the need for our involvement in the lives of those affected by Down syndrome. Two obvious ideas come to mind when thinking about the potential for offering radical community to those facing considerable struggles.
For a variety of reasons, I love living in a townhouse, and not only because I don’t have to do yard work (although that is nice). It actually boils down to one word: community. I run into neighbors everyday walking, taking Khai to the playground, getting the mail, or simply coming and going.
I’m not alone. A couple of weeks ago, we ran into a neighbor whose son has Down syndrome. In the course of the conversation, we discovered that their 18mo old was having his third open heart surgery the following week. When Jenna offered to help out in different ways, the support was greatly appreciated. In fact the family had specifically moved into a townhouse for the potential for community support—not help—simply community.
The emotional and physical strains of caring for a child with Down syndrome had this family seek out a place to live that could offer more community support than a traditional neighborhood. Is this necessary? If so, Christians are not living out their calling.
The implications are, of course, that my neighbors, and yours, are in desperate need of what we have to offer and what Christ calls us to—community. We don’t need to wait for others to literally move searching for community. Offering this community can be as simple as reaching out to someone we already know in our church, community, or neighborhood.
It is necessary to remember that we effect change in the culture around us. Our culture has the tendency to diminish the value of those with disabilities. Offering radical community means changing the culture around us by finding places in our congregations and communities to engage those who are overlooked and allow them to give back to the community in new and impactful ways.