Today’s post was originally published last week by LARB Channel Avidly.
By M.J. Dinius
Last night on Facebook, my friend explicitly linked the two stories dominating my social media feed: The ALS Ice Bucket Challenge and the events in Ferguson, Missouri. My friend asked, “How many buckets of ice would I have to pour over my head to get people to care about black lives?” Likely meant to be more provocative than substantive—especially when compared to the real and deep connections confirmed between Ferguson and the Middle East — the question might be seen as an opportunistic, if well-meant, politicization of a charity fundraiser. Or more confrontationally, it might be challenged for implicitly setting up a false choice between caring about African Americans and people suffering from a terminal, incurable disease.
For me, the post struck a still-quick nerve, compelling me to take seriously the question of what moves people to care about others these days, to question what it means to “care.” And it made me think again about the relationship of two concepts that are strange traveling partners: care, and cure.
***
My father died of ALS—or what used to be known as Lou Gehrig’s disease—in 2007 at age 60, two years after he was diagnosed. While training for a marathon, he developed a mysterious weakness in his left foot that took over a year to diagnose. Doctors thought it was a pinched nerve; suddenly it was a death sentence. ALS is a sometimes sporadic, sometimes inherited, untreatable, terminal disease that progressively destroys the motor neurons responsible for all voluntary muscle movement. The death of these neurons results in paralysis of the limbs and, soon enough, the inability to speak, swallow, or breathe. Cruelly, ALS does not diminish its victims’ ability to feel pain and they remain fully cognizant of their rapidly increasing debility, even as they are cut off from communication, nourishment, and air without the aid of mechanical assistance. It is relatively rare, with only an estimated 30,000 Americans living with the disease at any given time. Most of these are white men (93% of patients tracked by the ALS CARE database are designated “Caucasian,” 60% are men and the average age at diagnosis is 55).
While my friend’s Facebook post would seem to present the enthusiastic response to the ALS Ice Bucket Challenge as evidence for how much more eager many Americans are to care about an obscure disease that mostly afflicts middle-aged white men than about police brutality against young African American men, I’m not sure that all of this cold water is getting poured out of caring. Do most of the people getting drenched and challenging others to donate or endure this transient physical discomfort know much about the disease? Have they known anyone suffering from it? Does it matter?
The viral campaign has been an unprecedented success for the ALS Association, raising to date over $30 million in donations and what’s now called “awareness” to an unquantifiable level. But I’d venture to say that most people participating in the Ice Bucket Challenge know very little about what the campaign is for other than a “good cause”—some kind of disease or other. Accordingly, it seems even less likely that they truly care about real people suffering from ALS. Accepting a “Double Dare”-style physical challenge without knowing much or anything about the awful physical debility that those with ALS experience leaves a number of chronic social ills unaddressed and untreated. It may do worse than that, even—the shock of an ice water drenching turning into the self-satisfied feeling of having done some kind of good may actually perpetuate social ills. If the momentary suffering of the ice bucket challenge makes people feel they’ve done their part to cure, will they also feel absolved of more substantial acts of care?
***
Here I should pause to emphasize that to treat or cure a disease—especially ALS—is to relieve real human suffering. I don’t mean to diminish that at all. Nor do I mean to suggest that the ALS Association shouldn’t be raising as much money as possible for research, or that people shouldn’t donate generously (though I am appalled by how cuts in federally-funded research have forced the privatization of much-needed medical research). And I’m sure some people pour ice water over their heads while still being aware that giving money is a necessary but nowhere near sufficient response to a disease with effects like ALS’s.
As my father and my family discovered during his illness, physical pain and debility were only part of what he suffered. The social and structural discrimination that my father encountered as a disabled person was overwhelming. In public, people openly stared at him in his complicated wheelchair and at his breathing machine, as if his eyesight and feelings were as incapacitated as the rest of his body. They hurriedly moved themselves and their children away from him, sometimes even covering their mouths with their hands, as if whatever he had might be contagious. My dad needed all of his strength to maintain the will to live; he had none left to endure such regular inconsiderateness, much less occasional outright intolerance, of his visible difference from healthy and “normal.” So he gave up on leaving the house well before he was physically unable to do so.
Adding to this confinement, my parents’ health insurance—what would now be considered a “Cadillac plan”—paid for the wheelchair, and for the rental of the hoist needed to transfer him from bed to the wheelchair, but not for the modified minivan that would accommodate the wheelchair. Even worse, insurance didn’t cover what’s called “custodial care,” which includes bathing, bathroom assistance, dressing, or eating. The people who assisted us with these needs—all women of color—worked for the local franchise of a national “in-home care” subsidiary of a mega-corporation that paid them slightly above minimum wage (with no reimbursement for their transportation) and that kept the majority of the $18.25 per hour fee for its franchisees and shareholders. Let’s pause and think about this intersection: the way disease brought my disabled white father and these women of color together, in what might have been a relation of care, but which was pressured by profit motives that threatened at all times to produce frustration and resentment rather than intimacy. The company that mediated my father’s care profited precisely because there was no cure—for either the physical disease limiting my father or the social disease limiting his caretakers. (And my father’s illness makes me wonder: who profits from the lack of cure in Ferguson?)
On the night of his death, the corporate hospice service provided by insurance couldn’t find a nurse to come to our home (someone hadn’t showed up for their shift) to confirm that he was dead (it turns out it’s hard to tell when someone’s on a breathing machine) and the corporate funeral home took over six hours to arrive with an ambulance or a hearse. I forget which it was; by that point, it didn’t matter.
***
Nearly seven years after his death, remembering and recounting these aspects of his disease makes me tremble with anger. My family and I were repeatedly outraged and very nearly bankrupted by discovering just how little insurance covered and just how uncaring the “in-home care,” hospice, and end-of-life corporations were, despite all of their literature emphasizing “compassion,” “care,” and the combination of the two. Their vulturousness was undisguised, with one company triple-billing private insurance, state disability, and Medicare for a single piece of equipment or service.
One of the very hard lessons that I learned from my father’s and family’s experience of ALS is that we all submit to paying a fortune for a healthcare system and end-of-life services in which profits are the priority and patients and their families secondary at best, incidental at worst. Actual people—from specialized doctors at ALS clinics to the woman answering the phone for the hospice corporation—who expressed genuine care for my father and my family were the exception, not the rule. From this painful experience, I have come to conclude that we regularly and dangerously delude ourselves whenever we expect anything better from a for-profit healthcare system, when in every other way we accede to the system’s most destructive demands.This includes dousing ourselves with ice water instead of demanding a complete overhaul of our healthcare system, from research and treatment to how we pay for what is a basic human right. Such spectacular failures of our healthcare and justice systems, as we are seeing in Ferguson, make it hard not to conclude as well that human life has become merely incidental in an all-for-profit society.
As for the social ills (related, of course, to the structural, and likely more insidious and resistant), what I have in mind is just how much trouble Americans still have with dealing with difference of any kind. This, to me, is what connects Ferguson and the Ice Bucket Challenge most immediately. As individuals and as a society, in everyday life and in emergencies, we still have almost no tolerance for any kind of visible difference —be it physical disability or a darker skin tone—from a “normal” that is white and able-bodied (not to mention male and middle class). This intolerance, now as ever, is rooted in fear—be it fear of becoming physically incapacitated, fear of being a victim of physical violence, or, most basically, fear of having one’s habits of mind and behavior challenged or changed. It’s hard for me not to think that the people who stared at or physically distanced themselves from my father wouldn’t also cross to the other side of the street or clutch their handbags tighter if they saw a young black man in a hoodie walking towards them. How many of these people have, by now, poured ice on their heads?
In relating the ALS Ice Bucket Challenge to the events in Ferguson, and in making the political personal, I do not mean to make equivalent my father’s and family’s experiences of what we now call “microaggression” and the lethal aggression that Michael Brown and other victims of police brutality have suffered. Nor do I want to conflate race and disability. Instead, I bring them together in the interest of more fully registering just how frequently and thoroughly we police difference, not just on the streets of a racially and economically divided city when a cop shoots an unarmed teenager, but also unconsciously in our everyday interactions with others.
Saying this may just be another way of saying we should care about black lives, the lives of those with ALS—all lives. But I see registering how we deal with difference —along with caring about others —as something more like a stage of research than having found a cure for the plagues of racism, discrimination against the ill and disabled, and capitalism. I hope we’ll take special care, then, to realize how raising awareness and caring—about black lives, about the lives of those with disease—are only two stages in a very long set of procedures required to holistically treat our most refractory social ills. And I also hope that we’ll not just be open to, but advocate vigorously for experimental, alternative, and aggressive treatments for these ills. Otherwise, we risk losing the patient.
