Mother Land

Alexandra F. Baldwin

As Charlie Gard enters the last stages of his tragic life, debate over his (lack of) care continues in the UK and abroad. In the US, that debate has been driven by a multitude of agendas, from those who blame socialized medicine to those who praise socialized medicine for caring for him this far, to those who see this as a right-to-life issue more than anything else.

I don’t wholly agree with any of those, although they are not all that far off. I can’t rightly credit the public health system for “keeping him alive this long” if that same system is refusing a medically viable chance to treat him further (and, before the armchair doctors start in on the child’s prognosis: the doctor offering further treatment isn’t some quack snake-oil salesman, he is a professor of neurology at Columbia University Medical Center). And while the attitudes of the “quality of life” crowd sound pretty familiar, I don’t think that this is strictly a right to life issue: Charlie’s parents should have every right to eschew low-hope treatments if they think that Charlie’s fight is over now.

More than anything, this is about the right of an individual and family to self-determination. Socialized medicine isn’t the cause of this tragedy; it is just another symptom of the root problem: a willingness to abdicate frightening power to the state under the historically debunked theory that the state knows what’s best for its citizens. Charlie Gard’s parents sought to do something – seek the best care for their child – that is so fundamentally natural that most Americans would never even stop to think that it required any sort of permission.

At a very basic level, law in the UK has now evolved to the unmistakable conclusion that children are, first and foremost, the property of the state. Parents are given quite a bit of leeway in how they foster and raise those state assets, but when the rubber meets the road, the state is the ultimate owner of every child. Under British law, un-elected and unaccountable bureaucrats are the ultimate arbiters of what is in every child’s best interest.

There is a whole spate of potential iterations of this line of thinking, and none of them are anything less than terrifying. As the state is the official arbiter of which lives are worth living and not worth living, it stands to reason that the state also holds the power to order a pregnancy terminated if the Council of Wise Doctor Folk determine that the fetus has some sort of affliction that would make the life not worth living. And, of course, they decide what is and isn’t worth living. There are already countries where babies with Down syndrome are near-universally aborted, and the British government has just ventured into territory where, with just the tiniest extension of existing law, having a baby with Down syndrome could be deemed illegal.

{I’m old enough to remember when my right to have an abortion was based on an implied Constitutional right to privacy between my doctor and me. In the UK, that now includes me, my doctor and the entire 1.4 million employees of the National Health Service.}

Clearly, NHS’s right to block treatment of a patient under “quality of life” criteria extends to more than just the rare mitochondrial DNA disease that Charlie Gard has. What would we make of a healthy adult paralyzed in some kind of accident? Is that a life worth living? Or, as a better parallel, a healthy adult who suffered brain damage such that he or she could not advocate for themselves. Or some kind of neurological deterioration like ALS (sorry, circa-1961 Stephen Hawking, you have two years, at best, and that is just not worth treating you for).

What does this mean for the 850,000 British people who currently have Alzheimer’s? I would love for the Bureau of Life Quality Assessors to reconcile the decision to refuse care to Charlie Gard with their ongoing treatment of patients with late-stage Alzheimer’s. Surely, the dignified, humane thing to do is simply to refuse to treat them at all and allow for a quicker death. Nay, to block and pro-actively obstruct anyone’s attempts to treat them. We don’t want to be dragging out anyone’s un-worthwhile life, after all. We can also alleviate ourselves of the undue burden of signing living wills and healthcare proxies as well: after all, once a person can no longer make their own decisions, the Council on Lives Worth Living takes over.

Beyond the issues surrounding medical treatments for patients who cannot speak for themselves, this line of thinking has some other frightening logical outcomes that may currently seem far-fetched, but maybe aren’t as distant as you think. If the state owns your children and has the authority to overrule parents’ wishes in the pursuit of things it deems to be in the child’s interest, what do we do with kids who have special talents? Do extraordinary British children still have the right to pursue those activities that they enjoy regardless of what the state thinks is best? Can the state take gifted students and force them into specialized academies of science or math because, well, that’s what’s “in their best interest”? Do we start taking extraordinary athletes from their parents at a young age in order to send them to a special training facility to win eventual glory for the nation? If that sounds particularly Soviet, it is because that is probably where you've heard of that before. Once you have established that the state owns every child as its ultimate parent, you’ve allowed for that level of control over your life. It’s not a coincidence they called it “The Mother Land”.

Finally, how much do you trust the state to nurture and care for children deemed “different?” Maybe a child has fallen behind in school, or suffers from some kind of learning disability. Maybe he is just kinda weird and socially awkward. Maybe he is gay or transgender. Whatever the “problem” (as defined, of course, by the bureaucracy), the state now has the right to “fix”, or not, your children, through whatever means it determines is appropriate. Obviously, that usually isn’t going to result in killing the child, but Charlie Gard has taught us that sometimes, that’s what is in the child’s best interest…

I’m not trying to imply that the government of the UK is about to round up promising rowers to go to Henley Regatta Prep school or re-educating every four-year old boy who puts on a dress at day care. I get that the facts in the Charlie Gard case are particularly tragic and his diagnosis especially grave. But the theory put forth by the government, and affirmed by the courts, is extraordinarily far reaching and utterly terrifying. This isn’t a case of the state refusing costly or difficult medical care, this is about a state asserting its authority to do as it pleases with the children of its citizens, even if that means going to court to physically detain an infant against its parents’ wishes for the explicit purpose of denying the child legitimate medical care.

This case has raised emotions on both sides of the Atlantic, and Charlie’s death will answer none of the questions the case raises. Charlie’s parents are not only losing their only child, they are being tormented by a bureaucracy that seems to be intent on allowing their son to die as it sees fit mostly just to prove to everyone in the UK that it has the authority to do it. 

The British, along with much of the rest of Europe, have chosen to turn to the state to solve their problems. They have elected to surrender enormous swaths of freedom to government bureaucracy, and this is the inevitable outcome. May we be fortunate enough that our fellow Americans don’t make the same mistakes.