“Should Down syndrome be cured?” read the title of a Motherlode (the parenting blog at The New York Times) post a few weeks ago. “Would you cure your kid’s Down syndrome?” was Rod Dreher’s version of the question. Both posts and the hundreds of comments they provoked originated with a study published in Science Translational Medicine last November. The study detailed research conducted on mice that had been genetically engineered to mimic Down syndrome. The researchers provided a drug to alter the brain chemistry of these mice, and the mice who received the drug demonstrated improved cognitive function. As Dr. Ahmad Salehi, the primary author of the study, explained, “If you intervene early enough, you will be able to help kids with Down syndrome to collect and modulate information. Theoretically, that could lead to an improvement in cognitive functions in these kids.”
The study reports a theoretical possibility for improving cognition in individuals with Down syndrome. The same drug hasn’t been tested on humans with Down syndrome, so we don’t know whether these drugs would be effective or if they would have adverse side effects. Furthermore, the study’s doctors suggest that the drugs would need to be administered early in the child’s development. The individual with Down syndrome, in other words, would not be able to make his or her own decision regarding the treatment.
So the study itself raises ethical and philosophical questions, but even more problematic is the writers’ suggestion that this treatment offers a way to “cure” Down syndrome. The language implies that Down syndrome is a disease, a sickness that is currently incurable. But Down syndrome is the presence, from conception, of an extra 21st chromosome in every cell of a human body (thus the technical term, Trisomy 21). The presence of that chromosome can cause any number of medical conditions, but those conditions vary widely among those with Down syndrome. The extra chromosome itself is not a disease. It is a genetic difference. So any talk about curing Down syndrome is a misnomer.
This language demonstrates more than ignorance of biology. It reduces Down syndrome to a medical condition rather than understanding people with Down syndrome as whole—emotional, physical, social, spiritual—persons. It further reveals assumptions that Down syndrome can be conflated with mental retardation, and assumptions that a cognitive delay is a disease that needs curing. Finally, it assumes that drugs are the best way to address cognitive delays, whereas other research demonstrates that children with Down syndrome have been socially conditioned to meet low expectations for their ability to learn. (Low muscle tone as babies leads to low success at the tasks babies try to accomplish, which leads to lower expectations by parents, therapists, teachers, and others, which leads the child to try less. Taken from Teaching Reading to Children with Down Syndrome, by Patricia Logan Oelwein.)
Western culture places high value upon individual achievement and intellectual ability. In both posts, the writers referred to the concern that parents of children with Down syndrome feel about the prospect of a drug that would change the cognitive ability of their children. The parents expressed concern that using a drug to change their child’s cognition would change their child’s personality, and that it would also contribute to the cultural assumption that higher intelligence is better, always and all the time. Readers who commented on the posts reflected this perspective with comments like, “DS is a disease that limits a child’s potential. You’ll never meet a Doctor or a Lawyer with DS,” or, “The reason it is called a disability is because it is a lack of something (mental ability in the case of Downs) that makes a complete human being. That is a tragedy; it is not another equally good form of personhood.” Again, the language is telling. Limitations are bad. Being a doctor or lawyer is good. People with Down syndrome are incomplete human beings.
Christians have a version of this narrative when it comes to Down syndrome and other disabilities. Although there is a broad spectrum of theological perspectives, many Christians see Down syndrome as “evidence of the Fall.” Due to the entrance of sin into God’s good world, creation “fell.” This Fall had implications for our moral lives and our physical lives. Thus, we see the existence of cancer and other diseases. Thus, according to this narrative, we see the existence of Down syndrome.
As the mother of Penny, a four-year old with Down syndrome, I have wrestled with the theological, ethical, and medical questions posed by this extra chromosome in every cell of our daughter’s body. Was it a cosmic accident? A manifestation of sin? Something that needs healing, be that through a drug to boost cognitive function or through prayer?
The larger cultural narrative that conflates cognitive delay with disease and the Christian story that assumes genetic deviations from the norm occur only as a result of the Fall are both flawed. Our daughter is fallen, yes, but she is no more fallen than I am. She is no more or less broken, no more or less beloved. She is no more or less valuable to God. Down syndrome is constitutive of who Penny is, in the smile on her face and the curl in her hair, in her poor eyesight and tiny fingers and, somehow, in her particular relationship with Jesus, her love for her little brother, and her care for her friends at school.
All that is broken in this world is broken as a result of sin. And sin is that which separates us from God, primarily, and then from one another, from creation, and from ourselves. When my husband and I need to make decisions about medical interventions for Penny, we try to think about it in these terms. For instance, she has always tested positive for a mild hearing loss. A mild hearing loss potentially separates her from other people. So we have chosen, twice, to put tubes in her ears. Or, to cite a more profound example, I have a friend with a daughter on the autism spectrum. He once described feeling as though his daughter sometimes “lost” herself, as a result of the autism. Separation loomed between father and daughter, and even, it seemed to him, within her own being. It is these places of separation where we must turn to Jesus as healer, and where we must turn to Jesus as healer in a holistic sense, as healer of body, mind, spirit, and community.
It’s possible, I suppose, that a drug could help a child with Down syndrome by changing the brain’s neurochemistry. I’m skeptical, however, that a drug would be more effective in increasing cognitive ability than a community supporting that child and believing in his or her God-given potential, whatever that might be. In fact, the cognitive ability, as measured by IQ, of people with Down syndrome has increased significantly throughout the course of the past century without any drug therapy. According to medical textbooks, it has gone from an average of 30, to 50, to 70. That increase can be explained by two factors: increased medical intervention to repair heart defects, offer hearing aids early on, etc., and increased social awareness and support for families and children with Down syndrome. If I’m going to give money, time, or energy toward improving my daughter’s cognitive ability, it’s going to be by improving those types of medical and social interventions rather than through a drug.
I’m not categorically opposed to drug interventions, but I am categorically cautious. These drugs haven’t been tested on humans. The study suggests that the drugs are effective on mice if they are administered very early on in brain development. Starting a child on a lifelong regimen of drugs raises concerns for me about potential long-term side effects. Finally, there are other potential ways to address the same problems that don’t involve drugs. As with Alzheimer’s, the best way to prevent it is to actually do things to keep your brain flexible, through crossword puzzles and other activities. Drugs can also help, but those preventative measures seem equally—if not more—important than corrective measures. As a parent, I wouldn’t want a drug to feel like a shortcut that allows me to forgo interacting with my child to help her brain become more flexible and agile on its own.
The other theological lens I use to think about Down syndrome, and about human life in general, comes from John 10:10, where Jesus says, “I have come that they might have life, and have it to the full.” When our daughter was a few months old, I wrote in my journal, “It is hard to believe that she won’t be able to solve problems or read literature. And yet it is easy to believe that she will rush to a friend, or even a stranger, in need. Easy to believe she will bring joy and light and life. Can she live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.“
This recent research demonstrates a theoretical possibility that drug therapy can increase the cognitive potential of people with Down syndrome and also potentially protect against Alzheimer’s disease, which is prevalent among people with Down syndrome. This research is probably good news for those with Down syndrome. But the language used to discuss this potential therapy demonstrates that we have a long way to go before we understand these individuals for who they are: members of the human family who, like the rest of us, are limited and vulnerable and have much to offer. We should all watch how our language and assumptions can unintentionally exclude and devalue human beings created in the image of God.
People with Down syndrome don’t need to be cured. They do need to be treated as the complete human beings they are.
Amy Julia Becker is a writer, a student at Princeton Theological Seminary, wife to Peter, and mother to Penny and William. She blogs at Thin Places.
“Speaking Out” is Christianity Today‘s guest opinion column and (unlike an editorial) does not necessarily represent the opinion of the magazine.
Copyright © 2010 Christianity Today. Click for reprint information.
Related Elsewhere:
Al and Ellen Hsu wrote on having a child with Down syndrome. Christianity Today recently editorialized on how churches should embrace people with disabilities.
