By now, almost everyone has heard of or read about the severely disabled girl in Seattle known only as Ashley. Her parents, doctors and an extensive ethics panel made the decision to remove the uterus and breasts of the 9-year-old girl and also administer to her large doses of estrogen to stunt her growth and retard her sexual development.Ashley’s case, of course, sparked a serious controversy. Did her parents have the authority to make an intense medical decision for their daughter, who couldn’t, and never would be able to, speak for herself? Did the risks (blood clots, deep vein thrombosis) outweigh the benefits (rendering her easier to care for)? Does the fact that her parents call her their “pillow angel” signify that she will be infantilized, and will that be demeaning as she ages? Is there really anything wrong with that, since Ashley is stuck forever in an infant-like state?
Everyone – liberals, conservatives, the disabled, social scientists, doctors, bloggers – has an opinion, and everyone is voicing those opinions with great conviction.
Regardless of how ethical the decision of Ashley’s parents was, it seems the question that should be asked is, What next? How far is too far in cases of parents playing God?
The Ashley controversy has brought other cases to light, some hypothetical and some real. For instance, it’s one thing to want to alter a child who is already disabled to the point of a normal life never being possible, but it’s another thing altogether when parents want to inflict disabilities upon their potentially normal, healthy child.
Hard as it may be to believe, just as some parents want to create “perfect” babies, other parents with disabilities wish to create babies with genetic defects, so they can have children just like them.
According to MSNBC, a recent survey of U.S. clinics by Fertility and Sterility magazine found that the practice of creating babies with disabilities is already happening in 3 percent of clinics, though some argue this is not the case.
Members of the dwarf and deaf community don’t view themselves as disabled, so the desire of some to create dwarf and deaf children means they simply want a “normal” child – normal, just like them. Cara Reynolds, a little person from Collingsworth, N.J., proclaims, “You cannot tell me that I cannot have a child who’s going to look like me.”
So a child of Reynolds and her husband, both dwarves, would not resemble them unless he or she was also of short stature? It seems they would rather be so selfish as to pay upwards of $15,000 to inflict a disability upon their child, than have a child naturally who might be of normal height.
Even though they argue that dwarfism is not a disability, it’s inarguably a disadvantage. The Reynolds have most likely grown up combating prejudices and facing difficulties in everyday life, and they would rather force the same struggle against their child than give him or her a chance at an easier life. Isn’t life difficult enough as it is?
The case seems even more shocking when applied to deaf couples wanting deaf children. What parent, disabled or otherwise, would elect to have a deaf child when they could have a child with the ability to hear? Karen Krogstad, a 25-year-old deaf woman from Montana, says she understands why parents “would go to great lengths to make sure their child will be deaf.” She says of herself and other deaf people, “We see ourselves as fully functional beings who can’t hear.” Isn’t it a parent’s responsibility to do everything they possibly can to ensure that their child is healthy, happy and has the best opportunities they can provide? It seems sick to wish that one’s child would be deaf or otherwise disabled.
Jamie Grifo of New York University has been practicing embryo screening for more than a year but has seen no cases in which defective embryos were wanted. Grifo said he wouldn’t oppose a parent’s wish to select a baby with a genetic defect “if the parents were aware of the pros and cons, risks and benefits.”
If a parent was aware, though, of the risks, and the fact that their child would be at a disadvantage for his or her entire life, why would they go ahead with it? And just how would they benefit? By having the satisfaction of having a child who was more like them? Since when do children ever turn out like their parents, anyway?
Apparently, the question is sparking ethical debates left and right, but it seems that regardless of how far right or left your views fall, it’s wrong in all senses of the word to willingly choose for one’s child to have a disability. It should be unlawful, as it is very nearly inflicting harm upon the child. Dwarves, for example, are prone to spinal problems and bone deformities, often requiring surgery at some point in life.
It seems like the online magazine Slate had it right when they called this new process of embryo screening “the deliberate crippling of children.” There is nothing right or lawful – and certainly not humane – about that.