Wednesday, August 26, 2009

Living by another's leave

Last night, after driving back from Vermont, I caught a clip of Senator Tom Coburn (R-OK) at a town hall meeting on healthcare (Rachel Maddow Show). A woman, sobbing, describes her difficulties: a husband with a traumatic brain injury, sent home from a nursing home with a feeding tube, whom she is expected to retrain to drink and eat. She asks for help.

Sen. Coburn responds that his office will try to help her, but can't resist using this moment of someone else's pain and despair to score some conservative political points--what's really missing here, he says, is the failure of neighbors to help others who need our help. This statement is met with applause from an Oklahoma audience.

My initial reaction is that it's medically irresponsible for Tom Coburn, M.D., to suggest that neighbors can pitch in and help this man eat and drink again. And that care for the disabled, trained medical care at that, is best handled by the casual charity of the people who live on your street. Having worked with speech pathologists and doctors to evaluate and attempt to retrain Robert to eat and drink, I can testify that it is grueling, labor and time intensive work that takes most of the day. Every day. Frequent appointments with a speech pathologist are necessary to evaluate the safety of proceeding, how quickly, and with what exercises. The negative complications of allowing untrained people to assist with such a project are aspiration (accidental entry into the lungs of liquid droplets and small food particles) and choking. Incremental aspiration can lead to particularly dangerous pneumonia, and substantial aspiration can cause death. Choking, in an adult with mobility problems, can cause immediate death. It's difficult to administer the Heimlich maneuver to someone who cannot stand and who has either high or low muscle tone.

Moving beyond this initial assessment are several other serious concerns about the implications of Coburn's volunteer and charitable solution to our nation's healthcare problems. While it's sometimes easy to laugh in disbelief at this sort of thing, his response illuminates attitudes that underly and shape American attitudes and beliefs. Attitudes that deserve a closer look.

As the primary caregiver of a disabled child, I would much rather have 'government' help with caregivers, therapists, and medical needs than rely on my neighbors for help that is driven by their own schedules, interruptions to those schedules, and eventual fatigue with my family's long-term problems. Charity, too, is predicated on a sense of worthiness of the individual receiving help. And eternal gratefulness on the part of the recipient--that's a lot to live up to when your family is undergoing endless stress and fear. That is, it's difficult to be on your best behavior 24/7 under normal circumstances.

And there's a certain irony here. This morning, I listened to a clip of Ronald Reagan, running for governor of California, decrying Medicare and saying that, if socialized medicine were to be implemented, we'd be telling our children about the days when Americans used to be 'free.'

People are afraid of 'socialized' medicine because they fear losing freedom of one sort or another: freedom to choose doctors, types of care, having to pay more taxes and having to bypass other life choices, being able to make all of their own decisions. So healthy people fear losing 'freedom,' but have no problem telling the sick and disabled (and their caregivers) that it's OK for them to lose their personal freedom.

Because that's what's at stake here. Providing care for someone with disabilities or someone with a serious chronic or terminal illness is all about having your wings clipped. Relying on charity is the definition of permanent dependency. The definition of losing your personal freedom and the ability to make your own choices. If I have to rely on my neighbor to sit with my son so that I can go out and get groceries, well, obviously, that has to be driven by her schedule and availability. In fact, anything I'd like to do is out of my own hands. Including holding a job or making choices about the kind of work I'd like to do. And the charity of individuals can be rescinded at any time.

If you'll permit me to make a cheesy movie reference, there's a moment in The Last of the Mohicans that illustrates what I'm talking about. Cora and Hawkeye return to a friend's cabin only to find the occupants murdered by a group of French-controlled Indians passing through what has become a war zone in the French and Indian Wars. Cora asks why they would endure such danger, why they left England/Scotland to begin with. Hawkeye replies that they were willing to take risks because they'd tired of living in a society in which their existence was driven by the capriciousness of aristocratic politics: they were tired of "living by someone else's leave."

These are the sorts of people in the Coburn audience in Oklahoma--people who migrated west, whose ancestors probably settled Appalachia and immigrated from Scotland or other areas, looking for 'freedom.' Looking for self-determination and independence. Why people of this spirit and ethos cannot understand that the sick and disabled, as well as their caregivers, might not want to live in a two-tier society, where the healthy extend charity 'by their leave' to those who've suffered devastating misfortune through no fault of their own, thereby creating an unstable culture of dependency and lack of self-determination, is beyond me.

A clearly defined social program, run perhaps by the government, offers me the ability to plan my own schedule, make stable plans for employment, and fire abusive or incompetent caregivers without the risk of shredding the social fabric of my own community. I can then, with supports, earn my own living and be available to help my neighbors with their incidental problems.

But there's an even darker note that underlies Coburn's comments, a misogynistic underpinning. In the romanticization of frontier society that underlies his call to neighborly and communal help, the typical division of labor is that the men helped with the barn raising, or with sharing the plowing or harvesting tools and labor force, while the women cooked, quilted, and shared childcare. Women also were expected to tend to the sick. In a rural community with, perhaps, more traditional family structures, it's the women who stay home and are available for this type of assistance with the disabled and ill. Men might run errands or help fix a problematic car, or some such other thing, but aren't expected to sit for hours massaging someone's mouth and tongue, preparing the muscles to try to masticate food, and spend up to two hours trying to get a few spoonfuls of food into someone's mouth and down the throat, safely. The 'natural' order of things is that women have those competencies.

So can we carry away from Coburn's homily an inference on his part that it's really the women of the community who are responsible for pitching in and sharing care of the disabled? Giving up their own aspirations and so on?

Finally, Coburn's homily suggests an old-fashioned attitude to the sick and the disabled: that they are society's throw-aways, lost causes to be baby-sat by others, and persons incapable of eventual self-determination of some sort. Right--we don't want to create a 'dependency' society with these misguided social programs.


Bill VT-2-WI said...

Hi Jeneva: What a wonderful post. I found this blog through your facebook page. I want to share this with my friends and family. You have captured wonderfully one of the missing links in our "so-called" health care debate and that is the fact the current system traps us. How free are we? I am forever grateful for what we have, and given all the uncertainties in our world why do we have to make health care another one of them? Its sad, especially when you hear the arguments against having a universal system. Its “socialist,” it will encourage people “not to work.” However for all these shallow perspective the real facts are people our ages having worked 15-20 years at company, get laid off when they are most likely to need health care. The whole system is designed to take our premiums and then work like hell not to pay out. It’s the most egregious of exclusions. “Thanks for paying your premiums for 25 years but now that your are 55, laid-off and have a pre-existing conditions, you are well….screwed, you are a leper. Thanks for doing this, I can’t imagine when you can find the time. Stay in touch Bill

Elizabeth said...

Yes. Another post that takes my breath away with its power and clarity. Thank you again, for adding to my arsenal (although I do give you credit!).

Ms. Moon said...

I am here through Elizabeth and I just have to say this is a perfect reply to Senator Coburn's inane comments. Neighbors? NEIGHBORS? What the hell is he talking about? Obviously, he has no idea.

Kimmie said...

My neighborhood is a cul de sac. People drive into their driveways, press a garage door opener, drive their car into the garage and disappear into their houses. We can guarantee a great block party every summer. People are hardwired to protect their own schedules, interests, pursuits, pleasures .... life liberty and the pursuit of happiness - right? Coburn is suggesting a communal life that would be anathema to any flag waving patriot. Does he even know that he's a communist? I say this tongue in cheek ....

your response in this post is brilliant and would win the debate - if we were civilized enough to have reasonable debate and not just free for all "town halls"

Claire said...

I am new to your blog via Elizabeth...I'm Canadian, but I like your stuff. I'll be by more often. Thanks for this post.