A while ago, I read this article (http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html?pagewanted=1&_r=4&hpw) that my friend posted on Facebook. Understandably, she was outraged by this:
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? We can elicit people’s values on that too. 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 (New York Times, July 19, 2009).
In this excerpt, there is an implicit assumption that the life of a disabled person is approximately half the worth of an able-bodied person. Even if they are hypothetical figures, they’re offensive and grossly inaccurate. Having a disability of my own, I know that I am destined to have fairly expensive life-style that has to do with my Arthrogryposis, with adapted cars, showers, wheelchairs, braces, walkers, etc. that able-bodied people just don’t have to worry about. With Universal Heathcare on the table, I can understand how putting a price on someone’s life can be a very difficult task. Peter Singer, the author of the article, argues that the QALY measure should be used to objectively standardize this very task.
Admittedly, this task is immeasurably difficult to accomplish. How does one put a monetary value on extending someone else’s life? This is so difficult and subjective, to say the least. With the Universal Healthcare Debate on the table, it has become very relevant to most and very scary to some. For example, if I got a cancer – right now, at the age of 25 and physically disabled – my QALY score would be lower by default because I’ve been using a wheelchair most of my life. So, economically, extending my life another year or two would be more burdensome than extending an able-bodied woman’s life for the same amount of time, even though my physical disability has nothing to do with the cancer and does not decrease my life expectancy by default. How would political bureaucrats take that into account when making the decision to pay for my treatment or not?
Of course, resources are limited, as they have always been. And, I agree that my life may not be as valuable to society as, let’s say, the President (ok, that’s a dramatic example, but let’s go with it), and if the government had to decide between saving my life and the President’s, I would justifiably expect them to save the leader of our country. However, when it comes to a decision between my life’s worth and the worth of another random, able-bodied, 25 year old, female graduate student’s life, I would have a much more difficult time saying my life isn’t worth as much as her’s. Our potential for positively contributing to society is approximately equal (well, I’d like to think so), but because I may require assistance with something as simple as mobility, my life is assumed to have less quality than my peers’. Personally, I find this ridiculous.
So, what can we do about this grossly inadequate measure of the worthiness of one’s life?
Well, if you want to know what I think (which, obviously, you do…), I believe wholeheartedly, that the thought processes and stereotypes about the lives of persons with disabilities needs to change within the society. The mainstream community doesn’t realize that living with a disability can, at times, contribute to a person’s quality of life in a positive way. Yes, of course it’s difficult, and of course it sucks sometimes, but it also enable’s a person to view the world from a different perspective. (No, I’m not just talking about the perspective of being an expert on belt buckles.) And, if you have been disabled for some time, you realize that coping with your own limitations is easier than it seems to the able-bodied people around you. I can live a perfectly happy, productive life as a disabled woman and my quality of life is no more or less than someone else with a similar mindset.
I call upon you, society, to ask for a new way to measure the quality of someone’s life BEFORE we pass a law that would discriminate based on disability! Even if it’s not about money, I ask you to think of me as having the potential – no, to EXPECT me – to contribute to you in a meaningful way and earn my keep, so to say.