Valuing Life, Death, and Disability: Sorting People in the New York Times

[This post is a departure from my usual topics related to war, but since thinking about injured soldiers (as I do) means thinking about moral categories of embodied personhood, I hope the connection will be clear.]

I want to begin by applauding the New York Times and Danny Hakim for devoting considerable energies to their Abused and Used series exposing the deadly peril within NY state’s system of care for people with developmental disabilities. It’s not exactly a hot topic for an exposè.

But I was angry that in their contribution to the series this weekend, Hakim and co-author Russ Beuttner fed into ideas about people with disabilities that are part of the same deadly system their work has the potential to undermine.

Their focus on broken rules and poor regulation presents people with developmental disabilities as troublesome things to be managed and “dealt with.” Even their retelling of the story of James Taylor’s death conveys his life through burdens felt by others. Despite the candor and care of his mother and sister, visible in this accompanying video, Mr. Taylor’s life is primarily depicted as dead weight.

To be fair, the coverage reflects a double bind: these lives are not valued, so the series focuses on death and abuse in order to get attention. But in focusing on death and abuse, the series suggests it is deaths rather than lives that are worth attention, intervention, and resources.

So why do we care more about how some people die than how they live? As Mr. Taylor’s sister puts it: “these sorts of people are not valued in society”. This is true, but unsatisfying. We need also to ask what makes some people, but not others, people of “these sorts”.

The Used and Abused series confirms a common sense answer: These people are sorted by the biological facts of impairment; the neck that doesn’t support the head any better than a newborn, the brain that is ‘developmentally equivalent’ to a three-month-old’s. Those are facts of Mr. Taylor’s impairment due to cerebral palsy as described by Hakim and Buettner.

But this common sense is nonsense. Mr. Taylor was a 41-year-old man, not a baby. Comparing him to an infant is an (evocative, ubiquitous, offensive) analogy, not a statement of biological fact. And the strength of his neck does not explain why he was made to live in conditions that killed him.

I did fieldwork with injured U.S. soldiers rehabilitating at Walter Reed Army Medical Center. As the NYT, Washington Post, and others have reported, soldiers often sustain brain injuries with major cognitive consequences. But we don’t evaluate injured soldiers the same way as Mr. Taylor—even when their brains are injured or literally missing.

Yet there may be no quantifiable difference between how someone with cerebral palsy can think and how a brain injured soldier can think. Nonetheless, we actively support the life of an injured soldier but merely try to prevent the death of people like Mr. Taylor.

The difference between these two “sorts of people” (or kinds of people, as Ian Hacking might put it) is one we make. It is rooted in morally weighted social facts, not biological ones. It is about the lives we value as a society and those we do not to. This is a basic human inequity for which we bear collective responsibility. Luckily, it is one all of us can work to change.

Zoë Wool is a Postdoctoral Fellow in the Department of Anthropology at Columbia University. She works on the intimate, carnal, clinical and political making of fleshy life for severely injured American soldiers.

24 thoughts on “Valuing Life, Death, and Disability: Sorting People in the New York Times

  1. A powerful and provocative challenge to conventional thinking.

    How do you address the most obvious difference, i.e., between those who willingly and most likely in far better shape than any of us will be went in harm’s way in their country’s service and those, to use an ugly phrase, who were born that way?

    There is an obvious clash here between a universal ideal, that all lives are created equal, to which anti-abortion foes frequently appeal, and the sense of a debt that a nation owes those who have suffered their afflictions in its service. It is easy to assert the priority of one or the other. Can we do better than that?

  2. Justification and ethical issues aside for a moment, I think that the ‘common sense definition’ for “these kinds of people” is actually quite objective (in the sense of “can one tell the difference?” rather than “is it a good thing?”)and clear. Upon death, most people leave surplus value – over the course of their lifetimes, most people end up giving more to others than they take from them. Significant disabilities, on the other hand, often prevent people from doing this (and actually often necessitate the reverse). In the cases where it is not true (e.g. soldiers, Stephen Hawking) the treatment is different.

    For better or worse, we tend to value human beings for more than simply being a collection of functioning cells – for better or worse, we value human beings for what they are, what they were, or what they can (be expected to) become.

    It is all really a very sad and unfortunate set of circumstances. For my own part, were I ever to suffer the irreversible destruction of my cognitive capacity as a result of an accident or illness, I would certainly want my plug pulled (as in euthanasia rather than mere DNR) asap – the part of ‘me’ that I myself value would be gone already. But on what principles can we interact with people who never had (and who will never be able to have) the opportunity to evaluate their own preferences towards themselves? Do we add a fourth part to the above paragraph and value people for what they, but for a cruel turn of luck, could have been?

  3. aepxc, I’m not sure what you mean by “objective.” It’s not made any clearer because instead of discussing what you mean as this relates to a definition of disability, you switch back to justification and ethical issues when you forward a stance of social Darwinism. As we know from the history of social Darwinism, the idea that hierarchy is justifiable since different individuals have different surplus value to society is an argument that could just as easily apply to poor people versus rich people, and I assume that you don’t think class is a biological category(?). As an aside, I think it is instructive to notice that, again thinking historically, many social Darwinists were invested in this very idea of biologically-based class.

    But anyway, in contrast to the “common sense” definition that disability is a biological fact, disability studies scholars usually argue for the social basis of disability. For example, you seem to be positing that disabled lives are sort of pitiful because of, say, a “destruction of cognitive capacity”. But the thrust of this article, at least from what I gathered after quickly skimming through it and being able to extrapolate from my knowledge of other similar cases, is that the “cruel turn of luck” is to be forced into living a life within a specific set of violent institutional arrangements. This is the main way these people were “born into” disability. In other words, the problem here is not a biological fact but a social arrangement of prejudice and oppression that leads to abuse and death. As I read it, the point of the original blog post is to show that these violent institutional practices and social arrangements are propped up by “common sense” definitions and assumptions that are also intrinsically violent.

  4. After considering it, I think it might be unfair to call your position social Darwinism when it is really just some other kind of utilitarianism. But anyway, it is definitely an ethical stance rather than an “objective” definition.

  5. One of the best commentaries I’ve seen one this issue. It should be required reading.

    We’re dealing with people, not “value” units.

    Everyone should be entitled to the resources to help them build a life in the community where they are respected and treated with dignity – not one where they are merely just kept alive. And it’s up to us to align our thinking so that our support systems (all of them) are in line with these values.

  6. My reply to these thoughtful engagements in a minute, but first:

    This is the first official “Disability” post at SM: I’m embarrassed that we hadn’t yet created the tag.

    Since this is the topic’s official inauguration, I’m grateful to see we’ve got a real conversation going here and I’ll keep ‘em coming!

  7. Maniaku: Amen. I couldn’t have responded to aepxc better myself. I’ll just to add three quick points to your lucid reply

    • Critical disability scholars also point to the social construction of /impairment/ (the seemingly biological facts) in addition to /disability/ (the experience of living with impairments in a world that expects you not to have them).

      This should ring some bells (a Fausto-Sterlingian one for those who think about gender, a Latourian one for those who think about science, etc.), and I’d hope one of them is loud enough for aepxc to hear over those logic cancelling headphones that seem to be in effect

    • There is no such thing as an independent (and thereby complete, productive, and valuable) person, except in the morally weighted liberal imaginary, and I’m not talking about ‘collective’ vs ‘individual’ societies. There are many folks making this point (in anthro, queer theory, feminist philosophy, and more). For example, Lennard Davis drives it home with his concept of dismodernism pointing out that even the most mentally and physically normative citizen (and I think this is doubly true for soldiers) is dependent on/incomplete without “information technology, protective legislation, and globalized forms of securing order and peace” (Davis, 2002. “Bending Over Backwards”: 30)
    • One of the points of my post was that when we allow conversations about disability to become conversations about death, we are contributing to devaluing the lives of people with disabilities (do you hear the Mbembean bells?). I’m going to try /not/ to do that.
  8. John:

    I really appreciate your comment above and there’s a lot invites me to reflect on, so thank you. Here are a few thoughts:

    It is absolutely true that thinking about the social valuing of life in America confronts the issue of defining life that is at the heart of conservative attempts to eliminate abortion (among the latest attempts is Mississippi’s proposition 26defining fertilized eggs as people. It would be just totally fascinating, if it wasn’t so frightening). The politicization of life can indeed lead to strange bedfellows, something I’m mulling for a future post. Hope you’ll chime in then too!

    Also you put your finger on something very important by pointing to the clash between the universal ideal that all human beings are equal and the social and moral compulsion to feel indebted to some (and not others) and value them more.

    I think the way we can do better is to pay attention to those metrics, to think more carefully about how we evaluate the worth of kinds of lives and maybe also to insist that those metrics always go beyond both the biological and the economic.

    We talk about ‘the value of life’ as if it is one thing. But it seems to me that soldiers lives are usually weighed on a moral scale (e.g. the financial compensation and social support they are offered rests on a moral obligation); in the context of abortion, the scale is increasingly biological (when does life, biologically, begin?) but the value is moral and juridical; and in the context of disability, the scale is often economic and rationalized as biological (as reflected in aepxc’ comment).

    So we’ve got many more options than just triaging to sort out the kinds of lives that are worth more and allocate the value of life as a limited resource.

    One thing we can do is to reframe conversations to consider supporting life, rather than preventing death. Another is to recognize a certain meaninglessness in the liberal concept of equality by asking ‘equal to whom, based on what?’ and further ‘what social, physical, and juridical structures ensure that people are not, in fact, born equal in America?’ Another is to erode the idea that any of us are independent or self-sufficient by asking, as Elizabeth Povinelli suggests, “which forms of intimate dependency count as freedom and which count as undue social constraint?” (Empire of Love, 2006:3).

    Also, I want to challenge your invocation of the coherent moral economy of war, some assumptions of which are: Soldiers join the military specifically to fight and die for the nation. Citizens send soldiers to war. Wars are fought to defend the nation. Soldiers injuries therefore incur a moral debt, which citizens–and governments–are bound to owe.

    I’ve written elsewhere about some of the things that model doesn’t account account for, including the experiences of injured soldiers who join the military for all sorts of reasons, the least of which is to defend the nation or (almost) die trying. If we begin from that (very uncontroversial) point, the trajectories of value, virtue, and worth look very different.

  9. GWTC– Thanks for your comment and the pingback. Really glad it resonated with you…too much to hope the same is true for the good folks at the NYT?

  10. Zoe, thanks for finding my contribution useful. Allow me to make one more suggestion. I would do a bit more thinking in purely ethical terms before bringing in biological or economic considerations. The extreme pro-life position is an unconditional one.The fertilized egg is a person with an unconditional right to life. The support the wounded troops position is, from the start, a conditional claim. They put themselves in harm’s way for us; therefore we owe them.

    Like the pro-lifers, you are making an unconditional claim, that people with disabilities are, nonetheless, people and should be accorded the same rights and respect as any other human being. It is possible, however, to raise the same sorts of questions that come up, for example, in debates about early vs late-term abortion. Is there some definable boundary between fully human but as yet not fully developed or disabled human beings and biologically homo sapiens organisms that are, nonetheless, not human at all? E.g., in a brain dead, vegetative state like Terry Schiavo.

    I have no easy answer to this dilemma. There may not be one. What I do have is a vivid memory of a trip to Seoul earlier this year, where Ruth and I were shown around by a young Korean anthropologist who is closely connected to the disabilities rights movement in Korea. She arranged for us to attend the very political wedding of two victims of cerebral palsy who had fought for the right to leave the institutions to which they had been confined and make a life of their own in a place of their own. The wedding was held outdoors in a public park, at least half the crowd were in wheel chairs, and entertainment was provided by singers and dancers who frequently participate in political demonstrations. Afterwards our friend told us that disabled activists demanding wheelchair access to subways and other public facilities in Seoul are among the most successful activist groups. Why? They chain themselves to doors, blocking normal traffic. The police arrest them, but then have a problem. Seoul has no wheelchair accessible cells in its prisons. As a result, the protestors are inevitably scolded but let off and back demonstrating the next day.

    There may be important lessons to learn from examples like these, even if, at a philosophical level, conundrums remain unresolved.

  11. Actually John, I’m suggesting that we should recognize that what think of as purely biological or purely economic are always already social, political, and moral (ie value laden).

    I’m not suggesting that we identify the value of a life; I’m suggesting that we think more carefully about the differential ways we value the lives and deaths of differentiated kinds of people and what the implications of that are.

    So no, I do not think we should look for some biological threshold between life and non life. I’d go further than that. While it can be an important political and legal strategy, I think its a bad idea on a philosophical/analytical level to try and define the parameters of life, biometric/biologically or otherwise, even if we’re not going to understand the value of “it” as a zero sum (Agamben’s discussion of Karen Quinlan in the last part of “Homo Sacer” elaborates some reasons why, but again I don’t want this conversation to become about death).

    I think this approach to a singular definition of life is a bad and incoherent idea on a legal level too: In the U.S. corporations have protections as legal persons, and there are countries where Great Apes have basic rights and abortion is also legal. I don’t see how a single definition of a legal rights bearing entity (“a life” or “a person” or “a citizen”) makes sense.

    And it is a great and dangerous irony when rights–which are granted based on juridical/legal status (along the axis of citizenship)–are extended or retracted based on ‘purely’ biological bases. The tragic examples are too many to mention, but I’d direct those interested in contemporary examples to Miriam Ticktin’s work on refugees in France and Dideir Fassin’s critique of humanitarianism as a politics of life.

    On the soldier point, it hides more than it reveals to keep saying that “we owe them.” What is owed (Money? Bumper sticker displays? Attention? Political will? Respect?)? Who is the “we” (Pentagon? U.S. Citizens? Supporters of a military engagement? Opponents?)? When (In peace time? War time? During recruitment? During deployments? After injury? After discharge?) Why (Contractual obligation? Guilt? Civic duty?)? And according to whose social logic does this economy of value make sense?

    Thanks for adding the story of Korean disability activists to the mix. Very cool strategy.

    And yes, here’s to unresolved philosophical conundrums: they are the most productive kind!

  12. I think it is perspective and useful to distinguish between unconditional and conditional conditions. But I don’t see how the former bears more (than the latter) on the definition of a human life. Doesn’t this definition have an impact on vets just as much as people “born disabled”? I mean, if the vets were “not fully human” then would they be owed the same debt? Presumably not. Americans (I’d say we, but, alas, I am not American ^^) don’t have rehabilitation facilities for used ammunition and what kind of welfare and social support do Americans give to decommissioned aircraft carriers? To be a wounded troop you need to be a human being. As the original post said, if there is no quantifiable difference in how a brain-injured vet and a person with cerebreal palsy can think, then why is the first a human being and the second is not? This is perhaps where the conditional claim that vets are owed something more than the average citizen perhaps applies, but then that stance can’t be muddled up with a discussion about full/not-full human beings.

    I do see there are definite connections in stance between anti-abortion folks and disability activists (since a lot of disability activists are against selective abortion that targets certain kinds of people i.e. potential down syndrome etc.), and that can feel disquieting for a lot of people I guess. But again I don’t see how that link bears on the issue of abuse that happens inside “care” institutions. Or the subway example. Those people that chain themselves to doors seem to be, in quite an uncontroversial way, human beings. In fact, it seems like most people, apart from vets, generally assume that they should not be physically abused by public institutions and that they should get the same access to general public services as anyone else. Black people don’t need to go to war to win individually the privilege to sit wherever they want on the bus. So I guess maybe I am missing it. What exactly is the dilemma?

  13. OK, I agree. The conditional/unconditional thing doesn’t work. Still, the political dilemma remains. Are you building a coalition in which anti-abortionists and disability rights people come together under the banner of an enlarged “pro-life” banner, alienating pro-choice people? Or is there some other way?

    Is it possible to build a case around “thinking, feeling, responsible human being” that would Stephen Hawking, injured vets, and the folks with cerebral palsy we met in Seoul? I’m focusing here not on the logical boundaries where philosophical debates hang up but, instead, on the emotional center of the idea.

  14. By the way thanks for the kind words zoe and I am glad (though a bit surprised) to see a post about disability on savage minds. I did my fieldwork in Japan partly in social robot laboratories (hence the interest in the Jobs thread as well^^) and partly in an independent living center run by disabled people.

    Anyway, as far as abortion, moral philosophy, etc. in relation to disability, this is a nice series of posts (not mine, just sharing the link) based on a conference from a while back :
    http://whatsortsofpeople.wordpress.com/2009/01/21/thinking-in-action-10-pack/

    But just to clarify, is there a coalition specifically about abortion? Or just because both are “pro-life” in a vague sense? If the latter, then why not the same worry about people against the death penalty, anti-war activists, and any other “pro-life” group. Maybe I am missing the point though.

  15. Why? For not altogether logical reasons (see George Lakoff on American political moralities), anti-abortion folk cluster on the right of the political spectrum, while anti-death penalty, anti-war activists, etc., cluster on the left. I say “cluster” deliberately, because these distinctions are not black and white. Jim Wallis’ Sojourners movement is Evangelical Christian and anti-abortion, but otherwise very much on the left when it comes to poverty, immigration and anti-war related positions. Effective politics may require coalition-building with people whose views do not overlap 100% and may, if push comes to shove, turn out to be on opposite sides of contradictions. Insistence on philosophical clarity can fracture coalitions, resulting in political failure.

    Shadings may be as important as black and white distinctions. I think of my daughter, who is firmly pro-choice,anti-death penalty, ex-military, has recently had a favorite, but very sick, pet put to sleep, and would never consider doing the same to one of her children. Philosophical wrangling is fun, but I sense the need for ethnography with a wider focus than the disabled and those who care for them. Where is the hook that will move people for whom the disabled are now a low-priority issue to (I borrow the late Paul Wellstone’s words), “energize, mobilize” and, then, “organize”?

  16. Based on your response, it could be that a quick explanation would address your points. To be a bit oversimplistic, but necessarily so, disability studies (and disability activism) has been modeled on identity politics. Many of the arguments are quite similar. For example, a standard binary has been the impairment/disability binary, where impairment is some physical difference and disability is the social category/social disadvantage that arises out of that impairment. This is somewhat analogous to the sex/gender binary. And likewise, zoe above questions this use of the term impairment in a move that is, at least to me, similar to the questioning of the “natural” basis of sex ala Judith Butler. Both race and gender have generally been working against biological arguments as the way to define the subject; disability also makes this move. An exclusive focus on biological basis, for disability, is therefore something like saying “but black people and white people are different! look at their skin, anyone can see!” or “but women and men are different, they have different chromosomes, and women wear their hair long!” As I said, this is simplistic but it allows an orientation if you are not familiar with discussions of disability.

    Insofar as disability studies is a kind of identity politics, it tends to be clustered on the left, in the way you put it. This again is kind of taken for granted, I think, but might help to be spelled out explicitly. Of course, there can be conflicts. Feminism has a stake in a women’s choice to control her body, ie have an abortion. Disability activists have a stake in opposing practices that could be labelled eugenicist. But, like there have been efforts to combine say feminism with black activism, or feminism with queer theory, there are also efforts to combine disability theory with, say, feminism (The Rejected Body: Feminist Philosophical Reflections on Disability by Susan Wendell is what immediately comes to mind to me). Except as a rhetorical move to sort of dismiss disability studies/activism, I don’t see much sense in saying that it is aligned with the right-wing.

    As far as your final point about a “wider focus”, I must admit it irked me a bit. It could be I misunderstand you. I’m not sure how to address the question about ethnography, because it seems to me like saying “but it seems to me a feminist anthropology needs ethnography with a wider focus than just about the women.” The answer there would be, I suppose, a perplexed look with a “yes and no” and that would be the same here. As far as the hook for people who see disability as a low-priority issue, again, imagine framing this as “what is the hook for people who think that women are a low-priority issue.” Again, a rather disturbing question to attempt to answer, when you put it quite that way. For the hardcore activist, I guess they would kind of feel “Well, to hell with you! You are a low-priority issue to me as well!” Not necessarily a constructive attitude, but not an altogether unexpected one.

  17. “What is the hook for people who think that women are a low-priority issue” is a red herring. Women are more than half the total population. No one can ignore them. Their issues make and break elections. People with disabilities are, to politically calculating eyes, only a small minority and easy to ignore when jobs, the economy, global warming, etc., are priorities for the majority. Looking for a hook isn’t an intellectual connection. Fail to link your movement with the concerns of the majority and you go the way of other victims of the all-too-human failing compassion fatigue.

    It’s a simple, brutal fact. The likes of Judith Butler, et al, may be impressive to a handful of academics. They don’t control the votes, the cash, or the crowds to be politically effective. Facts like these are not good to think. They don’t feel good at all. But they are the awful urgencies of the moment in which we find ourselves. If we fail to consider them, where does that leave us?

  18. That’s completely backwards. Women’s suffrage is the result, not the pre-condition, of women’s political activism.

  19. The difference is that women who were activists spoke up and fought for the benefit of women, who were half the population. Activists who speak up and fight for the disabled may be equally smart, passionate, committed. Their cause is just. But they fight for what is, at the end of the day, a small minority. Thus, they need allies and finding them is hard in a world filled with good causes.

    I’m just brainstorming here, and there must be better ideas out there. What about an alliance between the disabled and Native Americans. Both are shunted aside, confined to institutional spaces (hospitals=reservations?), denied equal opportunities….are minorities who could use allies….

    My argument here is not against the disabled or those who work on their behalf. My target is an academic habitus that assumes that getting the ideas right will, ipso facto, make the world a better place. Ever read the Sermon on the Mount? How has that worked out?

  20. What I’m trying to point out is this minority/majority issue, while relevant in a sort of common sense, folk wisdom does not reflect some bare “reality”. People are not simply in a “minority” or a “majority.” It is not a straight, uncontested demographic fact. I think to imagine that women’s right to vote is historically inevitable, because of bare demographic facts, while disability is much different because disability is inherently a minority issue, is a kind of teleological argument.

    Substantially, there is already thinking in disability studies that does what you are looking for, based around the idea of the elderly. Everyone who lives long enough becomes an elderly person. And every elderly person becomes physically impaired as they age, and within our society, that leads to disability. This argument leads to the conclusion that (Almost) everyone therefore becomes a disabled person. This also applies in a pragmatic way to a lot of policy. A lot of changes that help disability people also help the elderly. Think about your Korean subway example–who else benefits from less stairs and more elevators, better access to the subway? Elderly people who can’t handle stairs are pretty candidates. What is the implication of all of this? Disability is not a minority issue. In fact it affects much more than 50% of the population, it affects almost everyone (except perhaps those who die young and die very quickly). Further, to the extent that this thinking displaces the idea that the “majority” is a young, healthy, white (in the case of the US) male, when in fact, this type of person is most definitely a “minority,” it helps all other kinds of “minorities” as well.

    Not all disability studies scholars and disability activists think this is a useful way to think. Some see it as counter-productive to blur the lines between the dominant majority and disabled people as an identity. Others think that this argument naturalizes disability by bridging it to the “natural” ageing of the elderly. These are good arguments, and they have counter-arguments. But the point I want to make is that the ideas do matter.

  21. By the way I found that argument about the elderly most clearly explicated in the Susan Wendell book I mentioned above. An academic philosopher ;)

  22. Sorry to spam post but I just wanted to clarify that I meant that I took the argument from that book, not that I found it for this thread specifcally.

    And also, no I have never read Sermon on the Mount ;)

  23. Maniaku,

    Thanks for the pointer to the argument re the elderly. That I take to be a real advance in our discussion.

    Just to clarify something on my side. I have nothing against academic thinking per se. Being able to step back and examine a topic critically, systematically and with at least a degree of dispassion is a vital step in all sorts of right directions.

    Also, I am not for a moment saying that women got the vote because women are a majority. If that were the case, several thousand years of radical male chauvinist piggery associated with traditional agrarian societies the world over (especially in East Asia, my own regional specialty) wouldn’t have happened. What I am saying is that the women who fought for the right to vote were fighting for the rights of a majority. That made it possible to build a movement big enough to win the vote.

    One of the things that is brilliant about thinking about the disabled and the elderly at the same time is that it substitutes “We are all in this together” for what are too often heard (do note, I’m not saying intended) as pleas for pity for people in special circumstances. The latter leads to compassion fatigue, the former to “Yes, this is a problem for all of us.” That’s good politics.

Comments are closed.