Intersectional IssuesPersonal Stories

First World Solutions

First World Solutions

I’ve seen the featured image show up on my facebook feed a few times now. The featured image states, “Annual deaths caused by the [sic] ALS: 5,600. Annual deaths caused by lack of access to clean water: 3,400,000.” The text is superimposed over an image of a white man doing the ice bucket challenge, which is a viral way of fundraising for ALS research that has been popular recently.

For those who have never heard of it, ALS – which stands for Amyotrophic Lateral Sclerosis – is a group of diseases with various causes that are only somewhat understood. We know it has to do with the accumulation of plaques in upper motor neurons, leading to their death. We know it’s genetic about 10% of the time. We know that it can have very different prognoses. We know that if you are North American, and you develop ALS, you are more likely to have the severe form that Lou Gherig famously had, one which is fatal in just a couple years. We know that it can cause dementia sometimes – but sometimes not, as Stephen Hawking, who has lived with ALS for almost half a century, amply demonstrates. We know there is an increased risk in athletes, possibly due to their consumption of athletic supplements containing Branched Chain Amino Acids (BCAA). And we know that there’s more to living with a terminal illness than simply dying of it at the end.

There a few possible interpretations, based on the different comments that I’ve found below the image:

1. Clean water that should be going to people dying of thirst is being diverted by first-world people, who are dumping the clean water on the ground, thus wasting it. (The hyperliteral interpretation)
2. First world people are willing to dump clean water over their heads for a relatively unimportant cause of death. (The more charitable interpretation)

The hyperliteral interpration relies on the premise that the reason people die of lack of access to clean water is fundamentally a problem of distribution of a scarce resource. I have seen several comments to the effect that individuals living in coastal cities really ought to do the ice bucket challenge in the ocean, because “it’s cold enough,” as though there were no implications for the use of clean water in the industrial manufacturing it took to create the car to actually get the individuals to the ocean and back home, the carbon load from the public bus you took, or even that went into the food used to power the bike you rode. And to be sure, it can be, but not in the way these first-world facebook slacktivists think.

The reason people die of lack of access to clean water is largely that we need clean water to treat the waterborne diseases you get from not having access to clean water. The waterborne diseases that come from lack of access to clean water don’t come from dirt getting in the water because an American was foolish enough to spill it on the ground while trying to raise money for medical research, but from the fact that humans have concentrated bacterial death coming out the back of them on the regular, especially if they get one of those waterborne diseases that makes you shit a lot. Which would pretty much be all of them. The lack of access to clean water is not merely an issue of thirst or an issue of access to markets – it’s more fundamental. It’s a lack of infrastructure – basic sanitation, plumbing, education, hygiene. It’s a structural inability to not shit where you eat. Cholera didn’t break out in Haiti after the earthquake because of a lack of first world activists showing up to redistribute the clean water to all the thirsty people, in other words.

The more charitable interpretation is actually more insidious, and is, I’d argue, an example of what Neil Degrasse Tyson called, “plenty of science denial from the left. This interpretation says that it’s not an objection to the literal use of clean water, but the figurative waste of resources going towards curing a relatively minor horrifying torturous possibilities inherent to the human condition, when you could be spending that money on the millions upon millions of people, often times infants and children, who die of diseases they contract due to lack of access to clean water. So it’s not that they’re wasting water per se, it’s just that if these ice-bucket-challengers truly wanted to help suffering people, they would be having some sort of gastroenteritis bucket challenge, in solidarity with people in countries (like Turkey, where I was once hospitalized for several days after I either opened my mouth in the shower or ate lettuce that had been rinsed in tap water – I’m not sure) where infrastructure cannot yet ensure access to clean water through municipal sources. The main treatment for that kind of gastroenteritis is largely supportive, i.e., lots of clean water to keep my hydrated until the lining of my GI tract regenerated enough that I could absorb water/nutrients adequately again.

You really can’t get much more anti-science than by making this kind of argument, that any use of resources (be they aqueous or cash-based) to fund medical research is unjustified when we should really just save as many people as possible. Aside from the counter-intuitive reasoning at play here (I don’t think more people is the solution to inadequate infrastructure; I mean, 3.5 million people are already dying every year due to lack of access to clean water, I hear), it could be used to undermine any fundraising for any cause ever. And it would be never-ending, because science sure wouldn’t innovate any solutions, because that would take money away from the people dying from all the solveable (soluble?) problems.

It’s so shortsighted. It ignores all the (unknown!) potential knowledge and ability to better the human condition that goes into researching a group of diseases known colloquially as “ALS.” It’s not one disease. It’s many diseases that are only genetic a relatively small fraction of the time. We know it has to do with an accumulation of useless proteins in the neuron, and it may have something to do with accidentally folding a functional protein in such a way that it acts more like a prion (think Mad Cow Disease). If you know much about the pathophysiology of neurological disorders in general, you can immediately see why research into ALS is, effectively, research into neuropharmacology, genetics, epigenetics, just to name a few really broad categories of research. None of us can know in advance how many lives could be saved as a result of the research the ice-bucket challenge funds but let’s put it another way.

Shall we condemn the wastefulness of Jenner, Pasteur, and Lister, too? We have the benefit of hindsight and can see that although perhaps all three could have devoted themselves to helping people dying of smallpox, for instance, or septicemia, their work saved not just their contemporaries, but indefinite people forever after, for as long as we keep safe the greater understanding of the pathophysiology of disease they gave us. ALS research holds the same promise, and should be given the same priority.

Previous post

Me and My Derp Cat

Next post

Ray Rice and Chronic Traumatic Encephalopathy: #WhyIStayed

Yessenia

Yessenia

Yessenia is a graduate student studying to be a speech therapist with an emphasis on traumatic brain injuries. She spends far too much time correcting the wrong people on the internet, lifting heavy things and training her cats. She's a proud internet atheist and trolls only for the greater good.

2 Comments

  1. September 8, 2014 at 7:31 pm —

    Thank you for your clearheaded articulation of a discomfort I feel upon seeing the fatuous false equivalence of these pious commentators.

    • September 9, 2014 at 1:07 am —

      Thanks! It’s super frustrating because it’s not only foolish, but even if ALS was the kind of disease that killed you shortly after you acquired it (like, say, lack of access to clean water will), and you didn’t have extremely famous, brilliant people spending half a goddamn century in a chair unable to move most of their body, it’s still a disease that in the modern era, still has no known cause for most cases and no known cure, meaning the usual causes of diseases have probably been ruled out, meaning the potential to advance our understanding of the human body is enormous.

      And since it is, in fact, a disease a person gets to live with for years or decades, it’s outrageous that people are casually suggesting that the suffering of chronically ill people should forever be on the backburner – or maybe not forever, just you know, until we solve all other problems (war, hunger, thirst, sanitation, education, natural disasters) that humanity faces which are wrapped up in the simple-sounding ‘lack of access to clean water.’

Leave a reply