Elizabeth Barnes is Associate Professor of Philosophy at the University of Virginia. She works in metaphysics, social and feminist philosophy, and ethics, and is especially interested in the the places where these subjects overlap. Right now she’s finishing up a book on disability (The Minority Body) and thinking a lot about the metaphysics of social structure.
Confessions of a Bitter Cripple
Elizabeth Barnes
I didn’t expect to feel so angry. A few years ago, having established a certain amount of professional security, I decided to start doing more work on social and feminist philosophy – especially philosophical issues related to disability. I’d always done some work on the topic, but I considered doing lots of work on it a professional luxury that had to be earned. When I began to focus more of my research on disability, I expected plenty of things – a deeper sense of fulfillment from what I was doing, a fair amount of side eye from colleagues, worries that the topic was too niche to be of general interest – but I didn’t expect the emotional drain that the work would be. I feel angry – more than I could’ve anticipated and more than I often care to admit – when I write about disability. And I also, at times, feel so, so sad.
I have sat in philosophy seminars where it was asserted that I should be left to die on a desert island if the choice was between saving me and saving an arbitrary non-disabled person. I have been told it would be wrong for me to have my biological children because of my disability. I have been told that, while it isn’t bad for me to exist, it would’ve been better if my mother could’ve had a non-disabled child instead. I’ve even been told that it would’ve been better, had she known, for my mother to have an abortion and try again in hopes of conceiving a non-disabled child. I have been told that it is obvious that my life is less valuable when compared to the lives of arbitrary non-disabled people. And these things weren’t said as the conclusions of careful, extended argument. They were casual assertions. They were the kind of thing you skip over without pause because it’s the uncontroversial part of your talk.
Now, of course, no one has said these things to me specifically. They haven’t said “Hey, Elizabeth Barnes, this is what we think about you!” But they’ve said them about disabled people in general, and I’m a disabled person. Even just thinking about statements like these, as I write this, I feel so much – sadness, rage, and more than a little shame. It’s an odd thing, a hard thing, to try to take these emotions and turn them into interesting philosophy and careful arguments. My first reaction isn’t to sit down and come up with carefully crafted counterexamples for why the views I find so disgusting are false. My first reaction is to want to punch the people that say these things in the face. (Or maybe shut myself in my room and cry. Or maybe both. It depends on the day.) It’s a strange thing – an almost unnatural thing – to construct careful, analytically rigorous arguments for the value of your own life, or for the bare intelligibility of the claims made by an entire civil rights movement.
I’m now putting the very finishing touches on a book on disability, though, so that strange and unnatural thing is more or less what I’ve been doing for the last two years. My book is an attempt to show that the the kinds of things that often get said about disability within the Disability Rights Movement – that disability is a valuable part of human diversity, that disability is a social identity that disabled people should claim and be proud of, that many of the most significant harms of being disabled are social harms – have clear philosophical defenses and aren’t nearly as counterintuitive as many philosophers seem to assume. Writing this book has been one of the most eye-opening professional experiences of my life. The beginning of the process was also the period in my life when I had to transition from being mostly invisibly disabled to being mostly visibly disabled. So the last two years have been an incredible learning curve, to say the least.
One of the most difficult things I’ve encountered is that, while I feel so angry and so sad about the subject matter, I have to work hard – especially now that I am visibly disabled – to not seem that way. A few ironic jokes are fine. But real anger and sadness? That has to be kept hidden away. And that’s because one of the biggest challenges to having my work on disability taken seriously is the worry that I am too ‘personally invested’ in the topic. And seeming emotional can only amplify those worries. Don’t get me wrong, I think those worries are absurd. I am personally invested in the topic of disability. Of course I am. But the last time I checked, most non-disabled people are also rather personally invested in the topic. That is, non- disabled people are personally invested in being non-disabled just as much as I am personally invested in being disabled. Disability – or lack thereof – is something everyone takes personally. And I don’t think that’s a bad thing, or something that impedes good philosophy. But the simple fact is that my work will be seen as personal in a way that Peter Singer’s or Jeff McMahan’s won’t.
The other pitfall in expressing emotion – especially negative emotions like anger or sadness – when talking about disability – again, especially if you are visibly disabled – is that people always misinterpret you, no matter how explicit you are. You are read as a ‘bitter cripple’ or a ‘sad cripple’. And of course you’d be angry or sad – look at what happened to you! (Readers should please picture me rolling my eyes deeply at this point.) It’s a surprisingly difficult thing – sometimes it’s an impossible thing – to explain to people that you are not angry and sad about your disability, you are angry and sad about what is being said about your disability or how you are being treated because of your disability. You can say that as loud, as often, and as clearly as you want – people will still interpret your anger and sadness as the natural result of the bad luck you’ve had in life. Again, hiding the anger and the sadness is the easier way to go.
But what I’ve been learning – in baby steps – is to try to channel my emotions into better philosophy. I’m trying to figure out how to use my anger and my sadness as motivation to make my work better, and I think – at least sometimes – that it’s working. (Obligatory shout-out here to Audre Lorde and Alison Jaggar on the value of outlaw emotions.) Sally Haslanger once told me to trust my anger. That was some of the best advice anyone’s ever given me. I’m trying to learn how to take my anger and use it as motivation to keep writing, especially on those days when the thought of using philosophical arguments to push back against the status quo feels somewhere between overwhelming and pointless. And while feeling this way can be exhausting – in a way that writing about, say, metaphysical indeterminacy never was – it can also make the end result deeply special and meaningful in a way I wouldn’t have anticipated.
Philosopher 
I have a child with multiple intensive disabilities, and this post needed to be written. Thank you Elizabeth Barnes! I don’t have disabilities myself and can never understand what it’s like. But I’ve had my arguments on disability waved off because of my “personal investment,” I’ve sat there while people argue that the world is a better place without my son – although they’ve never met him or spent any time with anyone like him. I love the advice to trust your anger. That’s a beautifully succinct way of putting what it’s taken me 5 years to learn how to start to do.
Thanks for this, Elizabeth
What you said about your work being interpreted as “personal” when the work of non-disabled philosophers on disability is not seems like an example of a frustratingly common phenomenon–members of a privileged group assume that they are, or can be, “neutral” or objective on issues that affect an oppressed group–while the members of that group are taken to be unavoidably, even inherently, biased and untrustworthy. Every time somebody nominates a gay judge or a judge of color, the same tired nonsense gets trotted out. Thanks for your very interesting post!
Thanks for this insightful post. I look forward to reading your book.
One small point: when philosophers casually say that the lives of disabled persons are “less valuable,” I think they often simply mean that disabled persons are worse-off for being disabled, i.e., that their welfare is non-instrumentally diminished by being disabled (though perhaps not overall diminished), i.e. that their life is going worse for them than it would be if they were not disabled.
Later passages from your post suggest that you would also reject this view. But it is at least not the terrible view that disabled persons somehow have diminished moral status – or deserve less respect –on account of being disabled.
For utilitarians, these issues may be linked: the fact that a disabled person will experience and/or produce less welfare is a reason to prioritize the interests of the non-disabled. But utilitarianism is a highly objectionable theory for many reasons, this among them. From an Aristotelian or Humean standpoint, we can say that being disabled is an intrinsically harmed condition without thereby impugning the disabled person’s moral status. This point also holds from a Kantian or contractualist standpoint, provided that the disability is not severe.
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Yes! Thank you so much for writing this. I’m feeling furious and despondent with philosophy for other prejudices than those against disability, but I still identify with this enormously. I can’t tell you how heartening your words are. Reading this felt like being thrown a philosophical lifeline.
“One small point: when philosophers casually say that the lives of disabled persons are “less valuable,” I think they often simply mean that disabled persons are worse-off for being disabled.”
Yes, I know they often mean this. But they often mean other things as well, including the reading I intended here. The particular instances I was thinking about were claims that the lives of disabled people are less valuable made in the context of allocation of scarce resources (justifying disability-based discrimination).
thank you, Elizabeth, for this post. Anger can be a motivation and guide for well-articulated just projects
I am currently raising two girls with disabilities. They were both born perfectly healthy. My girls now struggle through everyday tasks ex. getting dressed, riding the bus, attention in the classroom to outward bursts of anger. The sad reality is that none of us know what is headed our way. Disability can strike at any time to anyone. The anger and sadness is what I go through watching my girls learn correct behaviors and having them say they will hurt me. They are sad and angry they are learning the correct places to let it out as you are. I cannot focus my attention on the negative comments from family or strangers. My girls are slowly gaining. I am doing my best to enjoy the good moments, make appointments and make sure they laugh once a day. I love your post and I will be excited to read your book.
As someone with a disability, I find it intensely disturbing that writers on disability seem to make the same pro-life arguments that I hear them argue for why raped women should never be allowed an abortion (“I wouldn’t be here!” “Every child a gift!”). Whether it would be better for someone to have an abortion, or to not have been born, has no impact on the rights of people already here. It would be like me arguing that a woman who has had multiple difficult pregnancies and miscarriages absolutely MUST keep getting pregnant, because otherwise I wouldn’t be here. That argument makes no sense.
We also have to be realistic about resource allocation and the emotional, physical, and financial strain that disability puts on family, friends, and society in general. There is a real cost that has to be paid, and while I’m all for providing for people’s basic needs (including those of non-disabled people!) and reasonable accommodation so that they can be productive citizens (without which I wouldn’t have been able to do the work I’ve done), we cannot act as though disabled people are entitled to these things at the cost of diminishing the quality of life of non-disabled people. Disability is a struggle. It often does diminish quality of life. It does put a strain on society and it’s resources. We need to be honest about that.
Elizabeth, thanks for this excellent post. It seems entirely appropriate for someone (even someone who isn’t disabled) who holds your view about these ethical issues to feel anger toward those who don’t share that view.
Do you think there’s a better way to proceed in discussing these issues? If just the content of e.g. Singer’s view will inevitably and appropriately anger disabled people and others who disagree, what can we do to make discussions about disability work better while giving such views a fair hearing?
AnonGrad, perhaps some writers on disability do make arguments as crude as ‘but I wouldn’t be here!’ – but that certainly isn’t the norm in the literature, and it certainly isn’t an argument I was supporting in my post. My complaint is about the – unreflective, un-argued for – value comparisons of different sorts of lives, particularly those with disability compared to those without. That’s not the same thing, by any means, as complaining that if people had made different reproductive choices then I wouldn’t exist.
And yes, of course we need to be honest about disability, including the struggle it often brings. Again, I think if you actually read what people who write on disability say, you won’t find many people denying that struggle. What you will find, though, is an attempt to reframe how we think about various issues. How much of the struggle of disability is social rather than simply personal or medical? How much of the issue of resource allocation should be thought of as making up for current injustices (i.e., addressing the structural inequalities in how our society is currently designed to disadvantage the disabled)? And so on. If you read Anita Silvers or Eva Kittay or Rosemarie Thomson or Ron Amundson or any of the other wonderful scholars who have done such great work on disability, you don’t find denial of struggle or unrealistic, head-in-the-clouds perspective. What you do find, though, is a demand that we rethink our standard ways of approaching how we think about these issues.
I have a lot more to say about all this, but this probably isn’t the best forum. So if you’d like to continue this conversation non-anonymously, please feel very free to email me (e.j.barnes at virginia.edu).
Solipsist, that’s a really good question! I think one of the most important issues, in discussing or teaching these topics, is just to treat them with the care and respect they deserve. What bothers me most about the way disability is often handled isn’t so much that these things are in fact said, but rather that they’re casually assumed without much thought, support, or argument. They’re taken for granted. And that, more than anything, is what’s so infuriating. If someone has a very thoughtful, careful argument the conclusion of which is that, e.g., you really should leave the disabled person to die on a desert island if you have a choice to save some arbitrary non-disabled person instead, then I’m more than willing to listen, and I want to find out why they think this. But that’s not how these discussions tend to go. It’s more “Okay, so obviously you should save the non-disabled person” or “Okay, so obviously you should avoid having a disabled child if you can”. . .etc. And then the discussion moves on from there. There’s a general ignorance that what is being said is in fact very controversial, and very much at odds with how so many disabled people think about themselves and their disabilities. So I think the issue is as much, if not more, about how things are said – what’s thought to be ‘obvious’, what you don’t need to argue for, the views of so much of the disability rights movement that just get ignored – than it is about the specific content of what is said.
Thanks for writing this. This was a really interesting read and I learned so much from reading this.
I really liked how you were able to apply ethics to this issue of disability. From an ontological point of view, it does appear that disabled people are thought to have less intrinsic value than “ordinary” or “healthy” individuals.
This kind of reminds of Foucault’s “History of Madness” and stigma bestowed upon disabled people by society.
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Elizabeth, thanks, that’s quite helpful.
Thank you so much for this post, Elizabeth. I would like to follow up on something you said in response to Solipsist’s question. So you say that part of what is so problematic about some of the philosophical discussions on disability is how certain offensive views are introduced as uncontroversial assumptions in the argument rather than as premises that have been properly defended. I can definitely see how this is often the case. But I also worry that some offensive views are actually presented as part of properly crafted arguments and that the person putting them forward is basically trying to justify/rationalise his/her prejudices. In other words, I worry that philosophy is unfortunately not immune from people who cannot see past stereotypes, and that they will inevitably find some argument in favour of their view. Now, of course, in such cases, it will be a matter of time before someone shows where the view goes wrong. But there is still something unsettling about the fact that philosophy can be so easily used by people to make sense of their prejudices, thereby, in effect, shielding them from the hard but extremely important moral work of letting go of prejudices and seeing people as people. Do you have thoughts on this?
Hi Luara, thanks for your comment. I very much agree! My thoughts on this are strongly informed by what Sally Haslanger says about ‘the objective stance’ (see especially her paper ‘On Being Objective and Being Objectified’). I think it’s often the case that what gets viewed as calm, rational argument (‘just following the argument where it leads!’) in these areas is often, exactly as you say, in fact defending the status quo and established prejudice. So, e.g., Anita Silvers’ and Eva Kittay’s work gets viewed as ‘personal’ when they defend a disability-positive perspective, but the views of those who are equally invested in defending their own bias get seen as ‘objective’. So I agree that this kind of thing definitely happens, and is really pernicious when it does. On what to do about it. . .well, that’s more complicated! I am cautiously optimistic that our profession is becoming more aware of this kind of thing. I think a collective awareness is the only thing that can really change it.
Great post. Thank you.
Can I add a couple of points?
Re emotional involvement. Discounting the views of a person with disability re disability is like doing the same to a man re men’s health, or a woman re domestic violence, or a fit person on wellness, etc.
Re scarce resources. In countries like USA and mine, Australia, there is no scarcity of resources, just very inequitable allocation. The needs of we people with disability can be met easily = some very rich people might have a bit less.
As someone who has also written on disability together with someone who is disabled I found it interesting that our views regarding reproductive selection against disability are often misconstrued as critiquing personal choices made by individuals — thus we are sanctimonious– when we are concerned with the way these decisions are structured in the medical system and in society at large.
Such discussions of the value of the disabled bring to mind Adam Smith’s explanation in his introduction to ‘The Wealth of Nations’ that some nations “are so miserably poor that they are frequently reduced, or, at least think themselves reduced, to the necessity sometimes of directly destroying, and sometimes of abandoning their infants, their old people, and those afflicted with lingering diseases, to perish with hunger, or to be devoured by wild beasts,” contrasting those nations with “civilized and thriving nations” whose prosperity allows leisure for many and provision for all. The point of economic improvement for Smith is not the accumulation of ever increasing piles of goods, though some (for whom Smith had nothing but contempt) will seek this, but rather creation of a society secure enough that its members find it easier to indulge their beneficent impulses and suppress their selfish ones.
We surely are secure enough to be beneficent, and abstract discussions of the fate of poor souls marooned on a desert island are, after all, mere exercises. But though it’s understandable that insecurity and fear might drive desperate castaways to surrender to their less than beneficent impulses, that those disposing of the leisure to indulge in philosophy advocate such a surrender from a position of security and real plenty is, to say the least, unfortunate. Those who do so would seem to have either adopted the mindset of the miserably poor in the lap of a (more or less) civilized and thriving nation, or to have become hoarders of things. They merit both our disapprobation and scorn.
MJ–I get that impression by the language that gets used of “I wouldn’t have been born” or “You are saying I don’t have a right to exist” (the first isn’t an argument, and the second is only an argument if someone is claiming that we should kill disabled people). As I stated earlier, it’s almost word for word what I hear in pro-life rhetoric, so it doesn’t come across as an argument (or if it does, it only sounds like an argument against abortion). I understand critiquing the context in which we make decisions, but that’s not how it comes across. It also seems that there are real considerations why someone wouldn’t want a child that is disabled: the financial and emotional strain it will put on the parents, the toll it might take on the siblings due to reduced parental care and/or needing to help take care of the disabled sibling, etc.
My daughter has a rare chromosomal abnormality. A few years ago, she had a very serious health crisis, having contracted pneumonia. Before beginning aggressive treatment (for which our insurance was charged close to a quarter-of-a-million dollars), we were asked, given our daughter’s disabilities, we wanted to have her condition aggressively treated. Incredulous at the question, we insisted that whatever need to be done to save her be done. I have little doubt that the same question would not have been asked had one of my typical children had the same condition.
GKL, I’ve had similar. my son has a unique (as far as we’ve been able to discover) chromosomal abnormality. He was in the NICU for a few months after his birth. At one point, we were presented with a DNR, because of his “quality of life.” Clearly, the DNR came up only because of his disabilities.
A couple of other horrifying doctors: one suggested we didn’t need to treat his apnea aggressively because, “even if he loses some IQ points [due to hypoxia], it’s not as if it’s going to make the difference between his passing or failing geometry.” Another suggested we didn’t need to think about the impact of mild/moderate hearing loss on language development because “he’s not going to talk anyway.”
We met with one primary care doctor who said we were doing such an AMAZING job. I was already getting sick of people saying that, and I said something like I was just being a parent. He said, “You could have strangled him.” Wasn’t on our list of parenting possibilities, actually.
Happy to report we now have a bunch of wonderful, caring doctors. But I still worry any time I take him to a new doctor – what if she doesn’t think his life is worth living?
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Looking forward to your book.
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A riposte to those who put the “disabled are less valuable” line could be as follows.
“An implication of what you are saying is that, if you were to become disabled, you would be prepared to be put down like an injured animal. If so, are you prepared to sign a contract agreeing to this in advance. If not, why not?”
“You cannot be right about disability because you are disabled yourself”. That looks like an ad hominem warranting some sort of argument from authority in reply: “Yes, I am disabled. I also have an amazing CV that should lead you to think that I know how to put together sound arguments on any philosophical topic.”
It’s a specific form called the psychogenetic fallacy and it shows up in all sorts of places; race and gender studies are the most obvious, of course, but there are others as well. It’s an easy way to avoid taking someone seriously.
I find Prof. Barnes’ demand for arguments slightly baffling. All moral realist frameworks rest on foundational intuitions that can’t really be argued for. I suspect Prof. Barnes’ primary target is some form of hedonistic utilitarianism. So is the objection that the hedonistic utilitarians haven’t provided evidence for their factual claims; i.e., for the claim that those with disabilities have lives that produce fewer hedons, certeris paribus? If so then there is plenty to say. Measuring hedons (and defining pleasure) has always been one of the greatest weaknesses of hedonistic utilitarianism. But you can’t really object that the hedonists haven’t provided arguments for their foundational metaethical principles (i.e., that well-being is to be measured in terms of pleasure and suffering). No one can provide arguments for their foundational metaethical claims. If they could, the claims wouldn’t be foundational. I would also point out that it is nearly impossible to distinguish an “intuition” from a “prejudice”, mathematical visualizations aside. The intuitions in ethical cases are little more than pre-reflective inclinations toward certain judgments. In order to draw a distinction between pre-reflective ethical judgments one would actually have to have a fleshed-out account of the empirical psychology behind successful moral intuition. I’m still waiting on that one.
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Thank you for a wonderful post, Elizabeth!
If it’s not too late, I’d love to have your insight on a real-world scenario. In my spare time, I do volunteer marine search and rescue and one of the scenarios we train for is large-scale disasters with potentially many people involved. There is a very specific system that is used by the Coast Guard in Canada to efficiently triage and deal with large-scale disasters that have potentially many patients, some of which might be disabled or injured.
Here’s a possible instantiation of that scenario, as used during a recent training demo:
I am curious about what you make of this system?
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There are many disabled people, and all are different – so you may take this as one out of millions of unique stories. In general, there are three sets of disabilities: one which has no bearing on the lives work that the disabled person does; one which impinges, but does not damage; and one which strikes at the core of what is recognized to be the important work. In this case, I am in the third category: what is disabled is speaking, and all that goes along with that. Since speaking his a large part of what society recognizes as my value, does not wish to be bothered with deciding whether or not I am, in fact, useful.
The problem with this, is that certain individuals are far more able to do real work. Think of it as a professional athlete, vs. the average duffer. In sports, however, there is an objective way of measuring such capabilities. Unfortunately, not so much true in mental capabilities. A new idea creates new wildernesses which hundreds, of thousands – even millions – of individuals can work on for a lifetime – such as Bach, or Shakespeare. Thus the problem with using a triage system is that it only takes into account a very narrow section of capabilities. The unspoken agreement is as fighting men, because all of the valuable people have been extracted from the equation. There is no general Eisenhower in the mix.
However, is that in an individual setting their are an inordinate number of extreme cases in the mix, because that is the sort of individual who takes on the most dangerous, or most extreme, versions of work. Partially, they have a risk taking strategy – which is related to taking chances that they feel would be beneficial – and they are right. The ones who are wrong, are dead. Under normal circumstances, it would be difficult, but not impossible, however, under disabled conditions, the person is left to their own devices. They have to begin at 35, 40, 50 – or even later. This includes people who do not look damaged, but something in there genetics cause them to do horrible things to their own body.
Thus the brilliant that have been recognized are disadvantaged, but they have societies blessing to try again. But people who were born disadvantage, or have other strengths that people do not recognize, are in worse shape still. note that the brilliance of the recognized is not a small diversion, only that there is worse out there. And I’m one of the lucky ones – there are those who cannot participate in this discussion, even though they have useful things to say.
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