It all started with a conversation I was having with my good friend the other day. She mentioned a post from a former student she had seen on Facebook: the student was asking for prayers for their family as their young child had just been diagnosed with Rett syndrome. I had never heard of it, but it is a devastating rare disease that is caused by a spontaneous gene mutation that occurs almost always in young girls. Infants that are developing normally up until 6-18 months suddenly regress: they lose the ability to walk/crawl, talk, and use their hands–among other symptoms–which can leave them unable to dress/bathe/feed themselves. But, they continue to grow, of course, and can live into at least middle age.
This led to a conversation about a piece in The New York Times a few months ago, on “growth-attenuation therapy”: Should Parents of Severely Disabled Children be able to stop their Growth? I had never heard of this, either. Basically, it involves giving children estrogen in doses high enough to stimulate the closing of the growth plates in the long bones in the arms and legs [femurs, ulnas, etc.]. In the 1940s, the therapy was used on children who were excessively tall [and girls who were deemed too tall to be attractive. Sigh…] But, as greater height became more acceptable, this therapy had all but stopped by the 21st century.
However, in 2006, two doctors in Seattle announced that they had brought the treatment back for a different population of children: “nonambulatory children with severe, combined neurologic and cognitive impairment.” That is, children who would need to rely on caregivers for “every basic need for the rest of their lives.” The doctors reasoned that the child in their care, “Ashley,” would do better being able to stay at home with her family, continuing to go on family vacations and engage in family activities, but this could only be accomplished if she remained small enough that her parents could easily transport her. As a full grown adult, she likely would need to be cared for in an institution. So, they made the decision to treat her. As you can imagine, this is a highly controversial therapy, especially as it can be accompanied by a hysterectomy [to prevent the pain and discomfort of menstruation] and also the removal of breast nodules to avoid the growth of breasts.
Since their announcement, a survey has been published indicating that at least 65 other children also have received the therapy, but underreporting is assumed at this point. There are ethics boards, of course, that oversee these kinds of treatments, but there is no consensus on the practice.
Theologically, I have been thinking about all that might be relevant here: the creation of each individual in the image of God, the beauty and integrity of all bodies, the rights of each individual to be treated as intrinsically valuable, with love and respect. And, certainly, we don’t always know what is going on in someone else’s brain, especially someone with both physical and cognitive impairments. What do they understand? What do they experience? And, perhaps most importantly, what do they want for themselves?
At this point for me, however, what stands out the most is our inherent relationality–being created in the image of God means being created in relationship, for relationship. So, I tend to come down on the side of a treatment that is going to help foster and nurture relationships, and support an individual being surrounded by a loving community, rather than being more isolated and cared for by strangers–who may or may not form a functioning community.
Now, to be clear, that doesn’t end the conversation: I don’t know in every situation what best approximates the “life abundant” that God wills for all God’s children, especially when one form of “thriving” [physical growth] is cut off for the sake of another form [a richer family life]. I don’t know how to weigh these “goods” on a scale. And, I also know about sin, which always leads us to try and put ourselves and our own “goods” before others–is that involved here somehow, too? Probably–isn’t it always?
What I do know is that medical technology is a gift, and we can and should avail ourselves of it [with gratitude!] when it supports/enhances human flourishing. I’m not convinced at all that the “hand of God” is behind a spontaneous genetic mutation that has such devastating consequences. Chance is involved in evolution, after all–that is the kind of world God has created. So, instead, I think ultimately theology has to be willing to wade into the muck and mess of complicated ethical, biological decisions and wrestle around in there, maybe getting a little dirty and torn up the process.
The fact is, we are in the middle of transition when is comes to thinking about disability, and theology has been pretty slow to catch on. The author of the article writes, “At its core, the battle over growth attenuation is a battle between old and new ways of thinking about disability: the old ‘medical model’, which regards disabilities as a problem to be fixed, and the new, ‘social model’, which frames disability as a natural facet of the human experience. The social model promotes self-determination for those who have even the most complex disabilities; society should adapt to them, not the other way around.” I firmly believe in the “social model,” but still–what, exactly, does “adapt to” mean? We’re still in the midst of figuring that out, and as one parent says in the article, “Every child is different…Every family does the best they can.” That’s true for theology, too–we also should do “the best we can.”
Happy Lutheran 