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.
Blogging Against Disabilism Day Links
Linking to BADD and general disabilism posts I find interesting.
The Hand Mirror: Lose the language. Now.: On using “lame” or “spaz” and other ablist language. YES, THIS. This:
‘ableist’ language. That is, language that uses disabilities to disparage something. Very, very simple stuff, like saying that something is lame, or that someone had a bit of a spas / spaz.
Just.Don’t.Do.It.
Here’s why. (This is very much Disabilism 101 – old, old news to people who work with these issues all the time, but evidently, not much known elsewhere.)
You can say that x is bad just by saying, “X is bad.” But another way to say it is to compare x to something (which is also perceived is bad). So, “X is lame” carries that same connotation i.e that “X is bad.” The two statements are equivalent. And from there, it’s just a short step to: “Lame is bad. You are lame. You are bad bad bad.”
For the love of god, people: STOP CALLING THINGS LAME WHEN YOU MEAN THAT THEY’RE BAD, STUPID, FAULTY, BROKEN, NOT WORKING PROPERLY. STOP. IT.
Metal Sunflower: Opening My (Shortsighted) Eyes: On opening her eyes and noticing things.
I’ve started to see things. Things like the way that you might find a supposedly progressive space, where perhaps one or two of the toilet door signs have the braille equivalent underneath, but there’s no way of knowing how to find them, because there are no braille signposts. … Things like big public events. I’ve been temping, and one of the places I was temping at was a horse race. All of the seating was up a hill, up stairs and almost completely inacessable for anybody with mobility issues. … Things like public transport, too – things I’d seen but not really registered. There are lifts now at most big stations that I’ve been through. There are announcements on some London busses, informing everybody where the next stop is, and what route the bus is on. But it’s still not really geared up for people who aren’t able-bodied.
Womanist Musings: Fibromyalgia: The Invisible Pain: Renee on living with an invisible disability and chronic illnesses.
Please just stop and think before you speak. Moving from able bodied to disabled is a life changing experience and each person needs a different kind of support. Trying to pretend that nothing has changed is insulting. Yes these chronic illnesses are invisible to the naked eye but they are felt in every fibre of my being. Respecting me means respecting my illnesses; they are a part of me just like the the hair on my head. If I have to ask for help, recognize that it is a concession of my own will and I don’t need to be shamed for asking. There will always be a time for laughter and smiles but sometimes know they exist to hide the pain I live with that you have difficulty dealing with.
Bipolar Girl: Disability and Class: With the links between disability and health care, disability is inextricably linked to class issues:
There have certainly been ups and downs and will continue to be, but overall, I’m ok. I graduated with honors, went on to law school, and now am a successful lawyer. I honestly and wholeheartedly believe that without my parents and their money, their willingness to argue with the authorities of a university, their comfort with the legal system and ability to use it successfully – I would be dead. All in all, I had seven suicide attempts, not even counting the extremely dangerous behavior I exhibited while manic. But instead of trying again until I got it right, I had the opportunity to get my treatment right.
I believe that being born into a family with socioeconomic privilege made the difference between my success and my death.
BADD: Blogging Against Disablism Day
Today is Blogging Against Disablism Day (BADD). Check out Diary of a Goldfish for links to many, many interesting posts. Over at Shakesville, Liss wrote “BADD: Out of My Closet,” a thought-provoking piece on living with Post-Traumatic Stress Disorder (PTSD) from sexual violence.
This, Shakers, is disablism in a nutshell: I’d rather call myself “fucked up” than disabled. And I’ve been doing exactly that for most of my life.
I have post-traumatic stress disorder as the result of a series of sexual assaults which began when I was 16, committed across several years by someone who started out as my boyfriend.
It is disabling. It’s it a disability. I am disabled.
SKM wrote “Domestic Work is Real Work,” a post on how living with a disability, feminism, and labor intersect:
Now that I live with chronic illness, I can feel the cost of domestic labor; it’s taken out of my hide, as my grandmother would have put it. I studied my spoon theory (PDF) first-hand. I should be way ahead of those whose understanding is limited by chronic wellness. But sometimes I still find myself surrounded by homemade food and freshly washed clothes and lamenting, “I haven’t done anything today!”
In addition to being BADD, today is also International Workers’ Day. It is fitting, therefore, to think not only about the work we do, but also about who gets the privilege of being counted as a worker and why. …
The work we do to support the wellbeing of ourselves, our families, and our dwellings is real work. Asserting that truth is not only a feminist act, but an anti-disablist one as well. It is an ongoing struggle for me; one which I don’t have the privilege of ignoring.
I first ran across Christine Miserandino’s The Spoon Theory (PDF) in 2004 and found it extremely educational, as an able-bodied person that had spent most of her life without even considering the existence of spoons. amandaw’s post “What Can I Do?” was similarly eye-opening and made me think about how my able-bodied privilege isn’t an abstract concept. It doesn’t exist only when I’m consciously aware of it or run into, say, broken escalators and out of service elevators at BART stations and think, “I can still make it in, but what about someone with mobility issues?” It exists every day and takes up space every single day. I wrote a post on this topic at my other blog, “Taking the Stairs“:
Elevator closures and station infrastructure as a whole are an example of ableism working at a high level. It’s not something that I or any one individual can fix. However, it’s a result and a reflection of a society full of many people who don’t think about ableism, disability, and making things handicapped-accessible. As with any society-wide prejudice, it’s the responsibility of everyone in the dominant group, even if you or I don’t think that we’re actively the cause of it, because society is built to accommodate the desires and needs of the dominant group, which in this case is able-bodied people. And so ending prejudice and able-bodied privilege requires work both in the individual and group levels.
I take the stairs. It’s not about whether it’s faster (sometimes) or easier (never) for me than the escalator, it’s about thinking and being mindful that although the escalator is convenient for me, it’s not necessary. It might be necessary for someone else, and by joining the clogged-up line, I contribute to that clog and make their day, their participation in society, that much harder when it doesn’t need to be.
Taking the stairs isn’t just about taking the stairs and thinking that’s enough; taking the stairs is about examining the idea behind taking the stairs and applying it to everything else. It’s about noticing what’s ableist and what is and isn’t accessible and working to change that rather than ignoring it or accepting it as the way things are.
That post deals specifically with the problems with the accessibility of public transit in SF and with the need to be mindful that people can have invisible as well as visible disabilities. Lauredhel touches on a similar topic in “Can I Have A Seat?“:
[B]ecause this library has put in a couple of obvious bits of effort, I feel like they are more likely to be receptive to other suggestions. Places that make no effort I just can’t deal with sometimes – once I’ve managed the effort of somehow negotiating the obstacles, I have nothing left for standing around having a conversation with strangers, especially strangers who may be clueless and obstructive.
This is the huge barrier to the “Why don’t you just ask them?” approach to disability accessibility. I’ve tried bringing this up in the course of a transaction before, and been variously ignored, insulted, belittled, lectured, stared at blankly, and offered unsuitable solutions.
Leaving accessibility enforcement to individual people with disabilities means that a whole lot of time, it just isn’t going to get done. Because we’re already running on empty from dealing with life. Sometimes, another five or ten minute conversation that could be thorny and confronting just isn’t at the top of the priority list. Sometimes we just run out of tolerance for being insulted or deliberately ignored one.more.time. And sometimes we’re just too bloody tired. When we need to sit down RIGHT NOW, standing around chatting about it doesn’t help. When we’re bled nearly dry, we have to avoid even papercuts.
Sometimes, I really just want other people to educate their own ignorant selves. For it to no longer be my job.
As someone who is able-bodied, it is my job to: educate my own damned self. To proactively be mindful of disabilities. To not default to the assumption that everyone is able-bodied. To advocate for accessibility. To take the stairs.
Reading through today’s BADD posts is a good place to start.
ETA: Check out Web Content Accessibility Guidelines 2.0, a useful resource for making your blog or website more accessible.
Gov. Palin Uses Ableist Insults
Continuing on the theme of harmful rhetoric, VP candidate Gov. Sarah Palin thinks that ableist speech that belittles disabled people is acceptable (NYT):
PALIN: In my comment there, it was a lame attempt at a joke and yours was a lame attempt at a joke, too, I guess, because nobody got it. Of course we know what a vice president does. [emphasis mine]
Using lame as an insult is ableist for the same reason that using gay as an insult is homophobic: it relies on the idea that being lame is synonymous with being bad, stupid, or whatever else you’re using it to mean.I t’s rude and insulting to people with disabilities, because those insults are talking specifically about them (see Sweet Machine’s post, “Why I don’t use the word ‘retarded’”) and demean them.
I stopped using retarded as an insult years ago, and a few months back, I realized that if retarded was ableist, so was lame. By the same logic, so was dumb. I don’t use any of those ableist insults anymore; it’s disgusting how difficult it was to eradicate lame from my vocabulary. It’s surprising how much unthinking prejudice exists in the logic behind that defines certain words as insults (using whore or prostitute as an insult is anti-sex worker and often sexist; redneck is classist; wetback is racist). Seemingly innocent words that drip with hatred and systemic discrimination: stop using them.
On the minus side: it’s hard to change up habits of speech and thought.
On the plus side: the more you do it, the easier it becomes. Someone–a teacher or a Girl Scout troop leader–explained why using retarded as an insult was wrong. Reading in the blogosphere and learning about able-bodied privilege helped me draw the connection from retarded to lame. Dumb came shortly thereafter as a natural extension of that thinking and self-examination. It becomes easier as you go.
