Feinstein on Nelson Amendment
On Wednesday, Senator Feinstein (D-CA) made a statement against the Nelson Amendment, which would have barred any health insurance plan that accepts a single government subsidy or dollar from providing coverage for any abortion, even if that plan is privately purchased by the patient herself. Basically, Nelson, which was successfully voted down, was the Senate version of the Stupak-Pitts Amendment. The full text of the statement is at Feinstein’s Senate site, but this is the part that really stood out to me:
One of the problems in this whole debate is that everyone sees something through their own lens. They don’t see the grief and trouble and morbidity that are out there, and the circumstances that drive a woman to decide — married — she has to terminate her pregnancy for very good medical reasons. Nobody considers that.
This is all ideological and it really, deeply bothers me. So, I can tell you that I very much hope this amendment goes down.
This is why it’s important to elect more women, more people of color, more GLBTQI people, and more people with disabilities to office. We see things through different lenses, which are often influenced by our life experiences, which are in turn affected by our gender identity, sexual orientation, ethnicity, able-bodied-ness, and class background. When we elect more people from marginalized groups, they bring their life experiences with them to the halls of government and strip away the ignorance that is born out of being privileged. “One of the problems in this whole debate is that everyone sees something through their own lens.” Many men, such as Stupak, Nelson, and the representatives and senators that voted for their amendments, look at abortion and see a chance to subjugate women and wrest away their control over their own bodies. They see a chance to dictate what women can and cannot do with their bodies and with their money. They see misconceptions about what sorts of women need to have abortions. To quote Senator Feinstein, “They don’t see the grief and trouble and morbidity that are out there.” They don’t see the real lives and the real pain and at the root of it all, the real women and the real girls who are full human beings with the right to decide what to do with their bodies, just the same as men.
I wrote the Senator an email thanking her for her statement and her nay vote on the Nelson Amendment. Californians can also write her an email through hercontact page
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.
Socialized Health Care Can’t Be Worse
From today’s NYT: Some Cut Back On Prescription Drugs in Sour Economy (Stephanie Saul, 2008/10/21)
Your health or your food: that’s the choice forced by the rising cost of gas, food, and just about everything else. If you’re ill, medications are necessary for your health (I’m particularly aware of this at the moment, as I’m taking antibiotics for an infection), but the people that are the most in need of it are being forced to weigh the cost of medicine and the cost of food: long-term health versus survival.
“People are having to choose between gas, meals and medication,” said Dr. James King, the chairman of the American Academy of Family Physicians, a national professional group. He also runs his own family practice in rural Selmer, Tenn.
“I’ve seen patients today who said they stopped taking their Lipitor, their cholesterol-lowering medicine, because they can’t afford it,” Dr. King said one recent morning.
“I have patients who have stopped taking their osteoporosis medication.”
Sometimes, it’s not long-term health that’s put at risk. Stopping medication escalates into worse health, which requires more care at more expense.
But for other patients, he said, “the prescription drug is a lifesaver, and they really can’t afford to stop it.”
Dr. Thomas J. Weida, a family physician in Hershey, Pa., said one of his patients ended up in the hospital because he was unable to afford insulin.
Not everyone simply stops taking their drugs.
“They’ll split pills, take their pills every other day, do a lot of things without conferring with their doctors,” said Jack Hoadley, a health policy analyst at Georgetown University.
“We’ve had focus groups with various populations,” Mr. Hoadley said. “They’ll look at four or five prescriptions and say, ‘This is the one I can do without.’ They’re not going to stop their pain medication because they’ll feel bad if they don’t take that. They’ll stop their statin for cholesterol because they don’t feel any different whether they take that or not.”
Whether or not you have health insurance, the rising cost of medication is a problem. As usual, the problem most harshly hits the poor and the elderly.
The average co-payment for drugs on insurers’ “preferred” lists rose to $25 in 2007, from $15 in 2000, according to the Kaiser Family Foundation, a nonprofit health care research organization. And, of course, lots of people have no drug insurance at all. That includes the estimated 47 million people in the United States with no form of health coverage, but it is also true for some people who have medical insurance that does not include drug coverage — a number for which no good data may exist.
For older Americans, the addition of Medicare drug coverage in 2006 through the Part D program has meant that 90 percent of Medicare-age people now have drug insurance. And in the early going, Part D had helped stimulate growth in the nation’s overall number of prescriptions, as patients who previously had no coverage flocked to Part D.
But a potential coverage gap in each recipient’s benefit each year — the so-called Part D doughnut hole — means that many Medicare patients are without coverage for part of the year. …
Gloria Wofford, 76, of Pittsburgh, said she recently stopped taking Provigil, prescribed for her problem of falling asleep during the day, because she could no longer afford it after she entered the Medicare doughnut hole.
Her Provigil had been costing $1,695 every three months. “I have no idea who could do it,” she said. “There’s no way I could handle that.”
Without the medication, Ms. Wofford said, she falls asleep while sitting at her computer during the day but then cannot sleep during the night. Because she feels she has no choice, Ms. Wofford is paying out of pocket to continue taking an expensive diabetes medication that costs more than $500 every three months.
This situation is completely fucked up. People that are poor (disproportionately ethnic minorities), people that are uninsured, people that are elderly, people that have chronic illnesses, and people that are disabled simultaneously are the people most likely to need medications for their continued well-being and the people least able to bear increases in the cost of that medication. A profit-driven health care system that views health as a privilege rather than a right leaves all of those people in the dust.
I got sick last week. I woke up on Friday morning with a staph infection that oozed pus and throbbed with pain, so I called my doctor and got an appointment for the same day. While I was at her office, she checked with me to see if I was following up on my last test results and if I needed a referral to another specialist. We chatted about Prop. 4 as she took a look at the infection, and then she wrote a prescription and I picked up the antibiotics a few hours later. Why do I get such good care? Because my employer offers a good health insurance plan; because I pay hundreds of dollars every month for that insurance; because I pay an additional $100/year membership fee to the medical practice; because I make enough money that I don’t have to weigh the cost of the visit co-pay ($15) and the prescription co-pay ($10) and wonder if it would be better to skip the doctor’s office and see if the infection will go away on its own.
This situation is wrong. Access to quality health care shouldn’t be dependent on your ability to find an employer that offers health insurance, let alone a good plan, and it shouldn’t be dependent on your ability to pay out of pocket, either. Given that there will always be economic strata in society, tying health insurance to economic and employment status builds inequality into the system. It guarantees that there will be people without health insurance and people unable to afford health insurance and health care. Ultimately, this raises costs for everyone, since the cost of caring for uninsured people ends up being offset by higher fees for insured patients. I would much rather take the money that I’m currently using to pay for insurance premiums and pay it to the government in the form of higher taxes if it went to a nationalized health care system that covered everyone. Make preventative care accessible for everyone, lower overall costs, and give everyone access to health care.
Contact your elected officials about the shambles that is our health care system.
