I want to suggest something that I think can be easily misconstrued in about 14 different ways. I want to suggest it anyway.
It is not coincidental the ALS ice bucket challenge has gone viral at the same time that Ferguson has erupted in racial tension. The protests in Ferguson have amplified what is found across homes, street corners, churches, storefronts, and schools across this nation: a pulsating, ongoing investment in anti-Blackness. It is human-made, human-protected, and human-denied. While Coates’ articulate and careful feature on reparations last year expressed this for a new generation, Cheryl Harris had analyzed how the law protects whiteness as property in 1993. As Harris put it then, and remains true, whites have a vested economic interest in racial stratification.
What does this have to do with so many people taking the ice bucket challenge to raise awareness and funding for ALS? Nothing and everything. As a person who deals with a disease that is progressive and potentially debilitating, I am not dismissive of the ways in which seemingly permanent diagnoses, unsatisfactory research precision and pharmaceutical backing can compoundly impact an individual and family’s life in one fell swoop. But let’s consider our prevailing ways of understanding progressive neurophysiologic diseases and systemic oppression. Our national rhetoric about illness, health, and disease revolves more around biological misfortune than it tends to reference social causes and contexts. Because of that, the ice bucket challenge feels, in some ways, cleaner. It performs a function of doing something for a very bad situation that is no one’s fault but that can be perhaps augmented through awareness and funding. It is a worthy cause, made worthier because of that axis of inexplicable misfortune. Add to that a little social media, celebrity culture, and social network boost, and voila. It’s OK to have fun with it, because no one feels implicated in why ALS exists, why it is such a horrible disease, and why it affects mostly middle-aged white men. These are all assumed to be mysteries of science. Of course, even a light scratch at the surface of research funding, insurance, and pharmacological advertising reveals a system that is as deeply implicated by profit and loss as any other sector of society. But that’s just not how diseases are commonly understood.
While ALS is without a doubt a horrible disease whose time is hopefully being diminished through funding for research, it would be supremely tone-deaf to say that the protests and demands for justice in Ferguson, MO have been simply unfortunate. We benefit and are set asunder based on how we are raced in this nation, and there is no getting around that. People grapple with what to do, how to have an effect, or how to not speak or act about it. Even if they are not doing anything about inequity, they are putting effort into that vacuum, constructing belief sets and justifications that locate their energies outside of racism, all of which work to justify their social location. What can one lone person in Newton MA do about tanks being rolled out in another American city to intimidate, surveille and apprehend people protesting unjust killing by the state (just abiding by the fictions of nation/state borders for the moment)? And if she does something, can she peer pressure her friends into doing something as well? Not as likely to go viral, at a minimum. To be involved in supporting ALS does not require admitting how one might have benefitted from its existence; the same situation does not exist with systemic racism. On the contrary, the nonlocation, that is proclaiming to be colorblind is, in fact, staking a claim in systemic racism.
As I previously noted, we have a staggering empathy gap that is underwriting a great deal of the racialized inequity in this nation and beyond. It is nothing new. In 1900, Ida B. Wells wrote, “In the present apathetic condition of public sentiment, North and South, this is what the Negro gets who attempts to ‘defend the law and high rights.’ Not until the white editors, preachers and teachers of the country join with him in his fight for justice and protection by law can there be any hope of success.’”
Perhaps you agree with Wells about how to change systemic racism; perhaps you don’t. Maybe you decided early on that this essay is trying to rank pain and suffering and say one is worthy and one is not. I hope not. In the teachings of Buddhism, compassion is defined as the quiver of a heart at another’s pain. There is not a hierarchy or zero sum amount of compassion that we can hold. But how and when and why do people identify with others and decide to step up? Our actions speak of our values and our commitments. This includes dumping buckets of ice over our heads while being filmed as well as being silent.