Charlie Gard: Court Showed Disability Bias
It’s not often that you’ll find me linking to the Jesuit blog America but this is an excellent article on Charlie Gard. Apparently, there is more than meets the eye than we have been finding in most articles on this case. The court has shown a bias against Charlie Gard because of his brain function. That is, because of a disability and not because of “imminent death.”
Yet there is another story here. That story is the court’s repeated and consistent allusion to Charlie’s mental disability and brain damage as a key reason for not attempting the experimental treatment that the parents have sought—treatment that a doctor in the United States is willing to attempt and that people have supported with their funding. (On Friday, the Great Ormond Street Hospital said it would reconsider its decision to turn off life support for Charlie Gard and would seek a new ruling from the courts in light of “new evidence” about possible treatment.)
The decision by the Royal Courts of Justice, upheld by the European Court of Human Rights, even notes that Great Ormond Street Hospital staff had entertained the experimental procedure: “At one stage, Great Ormond Street Hospital got as far as deciding to apply for ethical permission to attempt nucleoside therapy here—a treatment that has never been used on patients with this form of MDDS—but, by the time that decision had been made, Charlie’s condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.” It is not entirely clear what “positive” might mean here, but the decision links “positive” with mental state. The court decision later notes: “But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”
The focus of the court’s documents is not on Charlie’s imminent death, but on his brain function. That does not, to me, mandate what “Evangelium Vitae” calls the “acceptance of the human condition in the face of death.” Rather, it suggests to me our own societal failure to accept people with disabilities, including and especially mental disabilities.