Many of you know exactly what I mean, but for those of you shaking your head and wondering exactly what the hell I'm talking about, you obviously missed the title. Yes, I'm talking about the article about Jahi McMath in The New Yorker magazine titled "What Does it Mean to Die". In case you haven't read it, click the link, read it, and then come back.
No seriously, go read it. Yeah yeah yeah, I know it's long! JUST READ IT.
If you're anything like me, the first thing you noticed was the pictures. There aren't many, but there is one very-obviously-posed picture of Jahi looking quite bloated though peaceful in her bed covered by an "I believe in Miracles" blanket, her mother leaning in talking to her, her step-father looking on and smiling, and her little sister peering in through the doorway.
Give me a break.
Much more striking than how Jahi looks is the overriding racial overtones that are pervasive throughout. The article starts with this little tidbit from Jahi's mother Nailah in the fourth paragraph:
Is any of this true? I wasn't there, so I can neither prove nor disprove these allegations. However, the procedure was performed at a world-class children's hospital (in a city that has a larger black population than white), not a run-of-the-mill facility or some rural clinic. I obviously can't disprove it, but I find it all but impossible to believe. And of course the doctors and hospital in question cannot defend themselves due to privacy laws.
The article goes on to explain how Nailah failed to understand how Jahi could be pronounced dead even though "her skin was still warm and soft and she occasionally moved her arms, ankles, and hips". This was doubtless explained to the family dozens of times both in the immediate aftermath and in the ensuing four years. I've written about it here multiple times, though I have a strong suspicion they haven't read it. Maybe they should.
Anyway, the article then delves back into thinly veiled racism with this passage:
Probably not surprisingly, Dr. Williams remembers the conversation differently (though her contradiction is not further explained in the article). Unfortunately it gets even worse in the very next paragraph:
Sigh. I nearly put the article down and stopped reading at this point, because the slant was plainly obvious. However, Jahi's story was not about race, it was about a little girl who suffered a horrible post-operative complication and died. It was never about race until they made it about race.
The next portion of the article is a retelling of the legal struggles Nailah went through and how she eventually got Jahi out of California to New Jersey, where she remains to this day. It isn't until over 3000 words later that we finally get into the heart of the issue - what it means to die (you know, the title of the damned article). The author goes into the history of how brain death criteria came into being, and she unfortunately delves into the seemingly true (yet demonstrably false) assumption that brain death was somehow invented in order to facilitate organ transplantation.
It would have taken the author 0.211 seconds (I timed it) to find an article from the Journal of Medical Ethics written by Dr. Calixto Machado (a name that should sound strikingly familiar to anyone who knows Jahi's case and who is mentioned later in the article) in 2007 that directly refutes this point. The title is rather unambiguous: "The concept of brain death did not evolve to benefit organ transplants", and the main point is summarised quite concisely in the introduction:
It is commonly believed that the concept of brain death (BD) evolved to benefit organ transplantation. Nonetheless, a historical approach to this issue will demonstrate that both had an entirely separate origin. Organ transplantation was developed thanks to technical advances in surgery and immunosuppressive treatment. Meanwhile, the BD concept was developed thanks to the development of intensive care techniques.Later the article explains how Jahi has supposedly developed the ability to move her hand and foot in response to verbal commands. This claim is based on a series of videos that have been corroborated by exactly no one, yet they somehow have convinced neurologist Alan Shewmon to declare that she no longer meets brain death criteria. What the article fails to mention is that Jahi had brainstem auditory evoked potentials performed back in September of 2014, which revealed that there was no auditory pathway, making it therefore an anatomic impossibility for her to hear anything. She simply has no neural pathways that can allow her to hear the commands to which she is supposedly responding. This hearkens back to the Terry Shiavo case, where her parents insisted that she could see them and respond to them, but an autopsy later revealed that her visual cortex had been destroyed, rendering her completely blind.
Just like with Jahi, Terri's parents had "video evidence". Just like with Jahi, Terri's parents believed that Terri was interacting with them. And just like with Jahi, Terri's parents were wrong. What you can't see in Jahi's video clips (but can with Terri's) is the presumably hours and hours of footage it took for Nailah to get these cherry-picked video clips. I have no doubt that Nailah saw Jahi twitching her hand and foot and recorded as much footage as she needed to get exactly what she wanted. There is an excellent explanation here about why we have no reason to believe these videos.
However, the part of the article that caused me to groan the most was this:
Of all the things that have never ever happened, this never happened the most.