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.
M.J. Dinius: Plays bass.
Well written and great read. I passed it out and hope that it falls on some open hearts and minds. We all need a dosage of reality. Fantasy will NEVER be reality, regardless of what media may tell you.
Thank you for this beautifully written piece–
Although I sympathise with you, you live in an extremely angry, violent and generally intolerant country. Until your society realises the self harm it is causing unfortunately not much will change. England isn’t perfect but I believe we can teach America a thing or two in tolerance and caring. Interracial accectance is far greater here accept for a few narrow minded sheep that follow those that try and destroy harmony. I feel sad for the lack of compassion shown by your fellow Americans, and find almost impossible to believe it happens. I also feel angry towards the lack of respect police officers have for human life of any creed or colour, you can’t tell me that full armed policeman can feel threatened by ONE youth so much that they need to out half a dozen bullets in them? Disarm police and outlaw guns, doesn’t stop violence or violent crime but certainly reduces fatalities. Our NHS was the envy of the world, now unfortunately we all require private health care and insurance. GREED is the the cause, but there are still enough truly caring people ready to give up their time to care, support and do incredible things to help others.
Thank you for this. So compassionate, so smart.
Thank you for this piece. First of all, I’m very sorry about your father’s painful illness and death. I have known people with ALS, and it is a very cruel disease. As for the ice bucket challenge: I, too, have been somewhat cynical, despite the fact that it’s a clever campaign, and that big bucks being raised. But you have reminded me that the problem isn’t just about people (regular folks and famous folks) “doing good” because it’s trendy – but that on a deeper and more political level, it’s also about a bankrupt health care system based on profit that depends on shoddy care as well as cheap labor, mainly immigrants and people of color. Does the money raised go towards research, and some administrative costs? Yes. Does it go towards addressing inequities in the labor force of the health care workers who care for sick people? No. Of course not. It’s this same failed health care system, part of our broader system, that privileges some people over others, with a profit-orientation that comprises care and stratifies its workforce. Here’s an example: the women of color taking care of our frail parents, with or without a disability, are the same women walking the streets of Ferguson. Their sons are the ones who are being targeted – having committed the crime of being black. The work of caregiving in the health care industry is undervalued and underpaid. It’s a miracle that many of these caregivers are able to get beyond the circumstances of their jobs and provide loving care. But sorry if I may be getting preachy. I was inspired by your own personal experience, and your ability to step back and link it to a broadened perspective and much-needed political analysis. Powerful writing…
“Saying this may just be another way of saying we should care about black lives, the lives of those with ALS—all lives.” I hear you and I see you. We are trying to be heard and seen as well. Find out how to be an Ice Bucket Hacker Here http://www.icebuckethack.com and here http://on.fb.me/1BI3TMI and give money directly here http://obs-onthemove.org/
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Thank you for writing this. It is very nearly identical to what I wish I could write, but four months after the death of my sweet Mama I am unable to even speak anything smart or insightful. Just rage and grief bombs. I struggle so much with the ice buckets, I feel like they are mocking the suffering she (and we) have endured. I struggle too with coverage from Ferguson – mostly delivered by clueless white people. Thank you for linking the two so eloquently.
Incredible article, capturing the consequences of a delusion mistaking form for substance. Your targeting of the root is a revolutionary wisdom, halting recurring mistakes by recognizing their engineers as opposed to their applications. Not to mention the way you have with words. Seriously, I can’t express how appreciative I am of your work, and the time you have put into transcribing your wisdom so to invest in real change. Thank you.
Well said. Thank you.
Beautifully written and full of empathy. I liked up ALS a few days ago when I got challenged and I will donate and do the challenge to help keep the money flowing. There are words, then there are words that mean something. Your words mean something so, thank you.
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i’m so moved. thank you for being so vulnerable.
This is a tangent from the main point of your article, but something resonated with me that you wrote. I’m so sorry you had a bad experience with hospice – but I hope you don’t think all hospices are like that. End-of-life care is another topic you could probably dive into very deeply and wisely like you have these others. Hospice is a wonderful service – people used to have the time and energy to care for their loved ones themselves at the end of their life. Now, the modern work schedule, men and women both working full time, and the complicated nature of people’s illnesses doesn’t allow for this as much. Instead we have other people caring for our loved ones. They will never care for our loved ones as well as we would or could, but I know many amazingly compassionate and loving hospice professionals. Just because a company is “for-profit” doesn’t mean it is heartless. I also know non-profit hospices that have their failings.
It may be far from perfect, but having hospice services is so much better than not having them. Again, you have my sympathies that you had a bad experience. I truly believe there are many good experiences out there.
Of the four family members my husband and I have lost to ALS (3 blood relatives of his, 1 a by marriage relative of mine), two were women. Working class women: a clerk at Penney’s and a school secretary. They were white middle aged women. Just want folks to know that women die of this hideous disease, as well. I do agree with Dinius’ comparison between ALS Ice Bucket challenge and Ferguson.
ALS is a terrible disease. I am so sorry that your father died from it, and I agree with you completely that our tax dollars should be going to research for diseases like this and care for sufferers. I see a couple of instances in your article, however, in which your family may have been able to circumvent the corporate status quo. For custodial care, you could have advertised for and hired caregivers without using a home care agency. You could have paid them substantially more than the agency would have, and still saved money for your family. Also, a locally-owned funeral home might have given you more prompt, caring service.
I have a chronic disability, and have hired my own workers for the past eighteen years. One has been with me for almost seventeen years, another for thirteen. They make my life possible, and I’m so glad there is no agency involved. As for funeral homes, my parents had a pre-need contract with Forest Park (now the mega-chain “Dignity Memorial”) in Houston, TX, from 1966. My father passed away in New York, though, and I used a family-owned mortuary for everything that could be done locally.
[…] social media can be used for advocacy and fundraising like this. Like one writer suggested in an article that discussed both ALS and Ferguson, it is not a mutually exclusive choice; but we need to be more […]
[…] in which the ice bucket challenge may actually be obscuring/ignoring systemic injustice, read this.) The events of Ferguson deserve at least as much attention as this viral campaign has received, […]
[…] On the ALS Ice Bucket Challenge and Ferguson […]
[…] will never have the luxury of being able to choose when to be stared at or laughed at. I read a piece by a woman, who is not a fan of this ice bucket challenge, whose father had ALS and used a […]