Shorter Peter Singer: Being Disabled Sucks, Or, How To Wallow In Ablism
An acquaintance of mine shared a post that linked to Peter Singer’s latest piece in the NYT Magazine, “Why We Must Ration Healthcare.” Most of the article focuses on the fact that health care is currently rationed in the U.S., whether by price or by less tangible factors such as ER wait times. I don’t disagree with that part; that’s nothing more than a clear-eyed look at the reality that the American health care system has barriers to accessibility. Where Singer goes off the rails for a demonstration of Able-Bodied Privilege 101, however, is when he discusses how to put a value on human lives as a precursor to putting a value on health care. In order to demonstrate the utility of quality-adjusted life-year (QALY) in rationing health care, he uses the example of how an able-bodied person reacts to a hypothetical situation in which they become quadraplegic, and how their desire to live changes. He then goes on to present a situation in which persons with disabilities (PWD) are damned if they do and damned if they don’t: he suggests that if a PWD is happy with their life, they don’t need any treatment that would improve their lives, and if a PWD is not happy with their life, then it would be wasteful to spend money on treatment that would improve their lives. In Singer’s QALY model, he assumes that being able-bodied is the norm and any disability is a negative deviation that makes the lives of disabled people inherently worth less than the lives of able-bodied people.
Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? … One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.
This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care. The QALY has been used by economists working in health care for more than 30 years to compare the cost-effectiveness of a wide variety of medical procedures and, in some countries, as part of the process of deciding which medical treatments will be paid for with public money. If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S. [All emphases in the piece are mine.]
In this scenario, Singer assumes that being able-bodied is the norm. He assumes that able-bodied people are neutral arbiters of the value of life as a disabled person, which ignores the reality that in an ablist society, we are steeped in ablism from the minute we’re born. After a lifetime of living in a society that considers being able-bodied to be normal and best and looks upon any form of disability, whether physical or mental, congenital or not, visible or invisible, as a negative deviation that makes a person with disabilities a lesser human being than an able-bodied person, an able-bodied person can in no wise be an objective judge–or at least no more objective than a person with disabilities. Singer later makes the assumption that PWD are self-interested when it comes to evaluating whether or not the health care system should devote resources to PWD; their bias presumably makes them bad judges. This assumption of bias, however, draws a veil over the fact that able-bodied people also have a bias: Singer outlines a system where there is a limited amount of health care, which can be devoted either to PWD or to able-bodied people. In this situation, able-bodied people are equally as self-interested as PWD. As able-bodied people, they have a vested interest in the allocation of health care, and so, when they decide that it’s only logical and reasonable to devote health care resources to the treatment of able-bodied people, they are not neutral, objective arbiters. After positioning able-bodied people as the best judges of the worth of the lives of people with disabilities, Singer further normativizes the the idea of able-bodied person as objective judge by demanding that PWD prove that their lives are worth living.
Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.
This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.
In this section of the article, the entire discussion of applying QALY to valuing disabled vs. able-bodied lives is nothing less than sheer sophism and poor logic, as the choice that Singer suggests between extending the lives of quadriplegic people and researching a cure for quadriplegia is a false one. Singer is essentially demanding that people with disabilities prove that their lives are worth living. The question is, prove it to whom? To Singer? To an objective judge? That assumes once again that PWD cannot be objective judges of their situations, making normative the idea of able-bodied person as objective and hiding the reality that able-bodied people also have a vested interest in the allocation of health care resources.
Furthermore, Singer’s doing a bait and switch. The premise of his argument is that a PWD has to prove that their life is worth living. If a PWD satisfactorily sucks up to the able-bodied masses and proves that life is worth living, even life as a PWD, then that means that their life is fine and so there’s no need to focus on research that would improve their quality of life (“If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it.”). However, if a PWD admits that they require aid to get through the day, whether in the form of anti-depressants, therapists, or crutches, then that means that the life of a PWD is worse than the life of an able-bodied person, and so it would be wasteful and inefficient for society to spend money on research that would improve their quality of life. Damned if you do, damned if you don’t. The argument is designed to be a no-win scenario that perpetuates and justifies discrimination against PWD.
In reality, the situation is not an either-or choice. It’s possible to spend money and resources both on extending the lives of PWD and on researching ways to improve their quality of life. It’s also extraordinarily stupid to suggest that if a PWD enjoys living, then they’re satisfied with their lives and would be averse to improving it. Human beings, whether disabled or able-bodied, generally seek to improve their lives. The constant search for something more, something better drives our lives, and even the happiest person in the world, if given an opportunity to be even happier, would likely take it. Demanding that PWD be satisfied with their lives as-is and never allowing them to seek improvements seeks to articificially keep PWD behind.
The question of how to make health care both accessible and affordable is difficult, and Singer is correct in that it’s necessary to address the question of how to distribute health care resources. However, his QALY model discards people with disabilities from the start and ensures a system where their opinions are never as valid as those of able-bodied people. It is a system that perpetuates the ablist prejudices already pervasive in our society. In his next piece, perhaps he should actually talk with people with disabilities, both congenital and, for lack of a better word, acquired, rather than hypothesizing about how he, as an able-bodied man, thinks that PWD would think.
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NOTE: I am able-bodied and am trying to work through the social conditioning and able-bodied privilege. Feel free to tell me when I mess up.
Further reading: posts that I’ve found informative and broadening. Reading the words of PWD talking about their own experiences is different from reading about able-bodied people speaking about and for PWD.
amandaw’s writing about disability and able-bodied privilege particularly her guest posts at Feministe. Her posts on Things That Make My Life Easier (Shower Chair, Symphony Pillow, Heat, Cute Pill Case, TENS) particularly came to mind when I read Singer’s implicit demand that PWD prove that their lives are worth living–and then seek no further improvements in their quality of life. These are things that make amandaw’s life easier and enable her to improve her quality of life and do more, but Singer’s argument would deny her both the medical devices (e.g. the TENS) and the expanded opportunities that they allow her.
Pocochina’s posts on living with Delayed Sleep Phase Syndrome (DSPS). It occurs to me that both amandaw’s and Pocochina’s disabilities don’t precisely fit into the most common image of disability, which is mobility (e.g. the disability signifiers wheel chairs, ramps). Typically, it’s also the image that Singer uses, that of an able-bodied person who becomes disabled. I wonder what that means?
The posts on disability at Hoyden About Town. Lauredhel’s “Can I Have A Seat?” was also at the back of my mind when thinking about how Singer assumes that a need for accommodation automatically makes a PWD worth less than an able-bodied person.
Astraea’s post for Blog Against Disablism Day is about being neuroatypical and the positioning of neurotypical as the norm that everyone needs to adhere to.
Diary of a Goldfish hosted Blogging Against Disablism Day 2009 and has the links collected.
18-20 « Pizza Diavola said,
2009 July 17 at 4:31 PM
[...] Getting my rant on for the first time in a while. [...]
lauredhel said,
2009 July 17 at 8:55 PM
Great article. This bit particularly resonated with me:
Marginalised groups encounter these DIYD, DIYD scenarios constantly, don’t we?
jason said,
2009 July 18 at 3:56 AM
Hmmm… I scanned this so I may have missed something, but in terms of health care, why not go all the way. If you’re sick, you’re dis-eased. You are then deviating from the norm as well. Seriously, what is more dis-abling, not having a hand or having a fever and vomiting and whatnot? So, why give any health care to the sick person… let them get well on their own.
IMHO, you either value life or you do not. I value it. It is not up to me to create levels of value. For anyone to even consider saying someone’s life is not as valuable as someone else’s means to me that they do not value life. There is no rationalizing argument that can support the supposition that it is possible to assert one values life, but only some people’s life.
On another note, as someone who is invisibly disabled (which is why I keep telling everyone that I am; and am making tshirts), according to Dr Evil’s system, it should be up to the Able-Bodied to prove they don’t have an invisible disability before they qualify as Able-Bodied. Since Singer obviously has an abnormal bias against nonAble-Bodied, he is obviously living with an invisible disability, and since we know you can’t separate the mind/body that easily, he’s got a disability, so he is one of the marginalized.
According to his system of insanity, Singer’s the first one we should be able to deny support for, if we really want to be inclusive, eh? :)
The Goldfish said,
2009 July 18 at 5:28 AM
I’d almost finished writing my post on Singer’s article before I saw this, this is an excellent response! My own post is here
Femmostroppo Reader – July 18, 2009 — Hoyden About Town said,
2009 July 18 at 4:06 AM
[...] Shorter Peter Singer: Being Disabled Sucks, Or, How To Wallow In Ablism « Pizza Diavola [...]
amandaw said,
2009 July 18 at 7:14 AM
I happen to like my life. I like to change it so that I like it better. Isn’t that what abled people do? You know — read a book, make a friend, take advantage of microwave and cell phone technology? But is that admitting that your life isn’t Good Enough, so therefore you might as well end it?
The logic is just so… stupid. And this is NYT caliber?
I look for things to make my life easier, cuz it’s nice to have an easier, more enjoyable life. And that should be the focus. Not, “disability is Awful and Tragic and the only way to value my life is if I can force it to fit the abled norm.” Just, “I have a life, I like it, but I might like it better a different way. hm, I think I’ll try it. Hey, this is nice!” I mean – should we all commit ritual suicide at age “1 day” because to go any further is to admit life wasn’t good enough to start with?
Rrrrrgh.
Thanks for the link — and thank you so much for a very thorough, reasoned post that hits all the right notes.
Sweet Machine said,
2009 July 18 at 8:15 AM
God, Singer is such an unmitigated jackass, and what’s awful is that his excuse for it is that he’s a philosopher. Yeah, and that philosophy is based on jackassery and sophism, as your post so beautifully points out.
My family recently faced a similar logical “conundrum” from an insurance agency. My mother has advanced Parkinson’s disease, and her mobility and cognition have declined greatly in the last year. For a while, she was getting physical therapy, which seemed to greatly help her use a walker and get up and down the stairs of her split-level home. But then the insurance company decided she shouldn’t get PT anymore… because she has an incurable disease. Just like Singer orders, they decided that once you’re disabled, quality of life is a moot point. She stopped getting PT, and guess what? She also stopped being able to go up and down stairs, which meant she stopped being able to leave her house, which meant she stopped being able to go to the senior center, which meant she stopped being able to socialize, which meant she stopped being able to see her friends… But whatever, she’s incurable, so suck it up, right?
amandaw said,
2009 July 18 at 10:05 AM
SM –
and then they wonder when some pwd despair and and wish to die.
They don’t consider that THEY ARE MAKING IT THAT WAY.
If we actually supported people, focused on quality of life not status of body/mind, we wouldn’t be lamenting these “conundrums” of having to pay for health care for people whose lives have been determined to have no value.
Sweet Machine said,
2009 July 18 at 2:27 PM
Exactly. “But just look at your life, PWD! Don’t you think it really sucks how nobody accommodates you? You must be so miserable. Ta ta!”
Anna said,
2009 July 18 at 6:41 PM
This is just me, expressing myself through screaming.
Mind if I link this on the Disability community on DW?
pizzadiavola said,
2009 July 19 at 11:20 AM
Hi Anna–feel free to link away!
RadFemHedonist said,
2009 July 19 at 1:55 PM
When I was vegetarian, I read at least one of Singer’s books on animal liberation, I can barely remember most of it, I think the animal rights stuff appealed to me at the time, as did Singer’s support for abortion rights (only to an extent and based on a premise other than women’s right to body ownership, unfortunately), I had no idea they espoused any of the garbage written in this article, aren’t they aware of the social model of disability? There’s always this emphasis on an innate quality of abledness that supposedly makes life always better and easier to live and of more value in all circumstances, ignoring the way that everyone benefits from a network of support and access to resources that are tailored to their specific needs, whether with regards to learning styles, or mobility, or staying organised, or getting mental health support if you need it, or whatever else. If PWD are unhappy in larger numbers than ablebodied people, that would be because they are not accommodated by society and their lives are regarded as worth less than the lives of the ablebodied, they are also percieved as lacking self awareness and individuality. It is a catch-22 to say “if you are unhappy with your life then it is not worth living, so no support, if you are happy with your life you do not need any support, even if there are ways in which your life could be made better by that support without violating the rights of others.*” Either way it comes down to not offering support and resources to disabled people.
*I am not spouting some anti-affirmative action nonsense about the rights of employers, I am saying this because I am sick of hearing parents talk about treating the minors in their care in ways that violate their rights as if it were their own personal choice, and because some men probably think that sex on demand would make them a lot happier but that doesn’t mean they’re entitled to it, and because religious people seem to need to be constantly reminded that they don’t get to practise their religion on other people’s bodies and force it on their minds, just because it makes them feel good, or for any reason.
pocochina said,
2009 July 19 at 4:45 PM
Serious trigger warning for the following paragraph.
So we should stop pumping money into suicide prevention? They clearly don’t value their lives! Clearly antidepressants and antipsychotics, not to mention therapy, are a waste of money.
I’m spitting mad. Thanks for taking this apart.
tarigwaemir said,
2009 July 20 at 6:55 AM
Isn’t Singer also the person who believes that we should kill people with disabilities in their infancy/childhood? I remember reading an article where he meets with a disability rights activist and told her to her face that he still maintained that her parents should have considered aborting her. I always thought his views were reprehensible (on par with James Watson’s suggested mandated screening for chromosomal abnormalities) but it’s good to get it framed in terms of ablism because it points out so clearly where his logicfail is.
(Oh, here’s an op-ed about that meeting, in case you haven’t seen it yet.)
*ahem* « Pizza Diavola said,
2009 July 22 at 8:44 AM
[...] July 22 at 8:44 am (2009, me) Bentseng is not a mere acquaintance, but a capital-f [...]
Liz said,
2009 July 24 at 4:24 AM
Thank you so much for this beautifully reasoned analysis of Singer’s latest efforts. His every thesis, whether it’s on animal liberation, infants with impairments, world hunger or healthcare rationing, reduces to this apparent deep-seated desire to see us off the planet. In Singer’s view of the world, it would be a far better place if we hurry up and die or, failing that, be killed. It might be okay to ridicule him, work out where he’s got this skewed take on life as it’s actually lived, but professorship at Princeton gives him influence; how many people will read this article in the NYT and nod in unthinking agreement? Because of that, this man scares the hell out of me. But he’ll not scare the life; damn it I’ll keep living if only to spite him
three rivers fog » Friday Catblogging and This Moment’s Roundup said,
2009 July 24 at 12:34 PM
[...] roundup brought to you by oh look a feather toy! Pizza Diavola deconstructs the recent Peter Singer NYT article. The introduction: An acquaintance of mine shared a post that [...]
Helene Ryles said,
2009 August 1 at 4:07 PM
I’m a vegan and animal rights activist. I am also deafblind.
I once wrote to Peter Singer about another animal rights activist who was born with spina bifida. He made a much better activist then Peter Singer. He was vegan too, which incidently Peter Singer isn’t.
I never got a response. Simply I suppose because I told him straight out that I was deafblind so he considered my views not worth bothering about.
Helene ryles.
Kathy Podgers said,
2009 August 11 at 9:35 AM
Progressives here in cambridge ma may be “challenged” by this issue, when I bring it up in the debates for cambridge city council.
kathy
J said,
2009 September 15 at 1:33 PM
[This comment has been redacted for violating the comment policy re: ableism.]