Let us know how we're doing! Take Pipe Dream's Readership Survey
Opinion

Defining humanity in the face of disability

Illness can rob a human of the very essence that makes him human

When it comes to giving birth, it’s scary to think of the potential problems the child may have. Such instances put the parents in an emotional and moral position that they likely never imagined would occur, and while some birth defects are very manageable and put little to no stress on the family, others require a life-long commitment to sustain the child.

The profound and unwavering love attributed to parenting relies heavily on the autonomy of one’s own flesh and blood and the realization of having created a being of vast possibility in both character and future prospects.

Birth must be incredible. Women have the gift to experience something no man could ever truly fathom. But what if one’s child is born in such a way that there could never be a true and reciprocal love from the parents, or even the regard for the child as human?

Some people may not be considered human? Wow, you heartless bastard, right? Hold off the emotional reaction — for the next few paragraphs at least — and maybe this idea will prove to be more sensible.

There is a birth condition called anencephaly that causes a child to be born without a large portion of the brain and skull, often resulting in death during or shortly after birth. On YouTube, there is a video of a family whose son had this very disorder and, despite all odds, was celebrating his second birthday.

His name was Nickolas Coke, and the reason he was celebrating a birthday at all owed to the fact that his brain stem was still intact, allowing his bodily systems to function well enough to keep him “alive.” He lived to be nearly 4 years old, much longer than expected for a child with anencephaly, but passed away recently. The video may be subtly disturbing to some, as Nickolas sits expressionless on his mother’s lap, his face in intermittent spasms, while his family members talk about how much they love their child and how he seems to be aware of his mother and grandmother. They even discuss, in a previous video, how he surely feels something, some emotion, which makes him human and precious.

This syndrome begs the question: what makes one human? Is a beating heart enough? This child felt no emotion, had no cognitive thought — or any thought, whatsoever. He was a protoplasmic bundle of subroutines and completely absent of consciousness and really every quality that is associated with humanness. The most human quality about him was his striking humanoid resemblance — he is simply a shell.

I commented on the video, questioning whether or not he could be considered human, and it catalyzed many emotional responses, all of which defended his humanness with the presupposition of some sort of awareness or ineffable human quality. But none of those qualities exist.

One user made the slippery slope argument: that defining someone’s humanness based on their “quality of life” could lead to the dehumanization of those who are severely mentally handicapped or impoverished. For Nickolas, quality of life is completely inapplicable. This case isn’t a matter of quality. Nickolas Coke isn’t even eligible for placement on the spectrum of “good life versus bad life.” For such a consideration, he must be conscious of the harms and benefits his life brings him, at least in the most basic of ways. He had no concept of pleasure or pain, so the quality of his life was irrelevant.

Now, as a thought experiment, if it were known that a fetus would develop in such a way, should abortion bear ethical and moral consideration? Is such consideration even applicable? Maybe abortion in this case would simply be practical and nothing more.

The only future that will be affected is that of the parents. The heart of the abortion debate lies in the arbitrariness of when human life truly begins and, subsequently, the ineffable and almost divine nature of man that should be protected in consideration of a fetus’ potential life.

For Nickolas, unfortunately, none of that was relevant.

The family called this a miracle, but maybe “unlikely and unfortunate” is more fitting. The Cokes made the best out of a bad situation and that’s great, but there was a delusional and misguided tinge to their thankfulness.

Views expressed in the opinion pages represent the opinions of the columnists.