About the healthcare debate- who defines what is "normal health"?

In the Healthcare Debate and Disability Studies article over at Literature, Arts and Medicine Blog, the author asks the question "who defines normal health?", noting two related items in the NY Times:

One was Dr. Abigail Zuger’s book review of Normal at Any Cost by authors Susan Cohen and Christine Cosgrove and the other was an essay entitled "To Overhaul the System, ‘Health’ Needs Redefining," by Dr. H. Gilbert Welch. What these articles have in common is that both ask us to re-examine what is meant by "normal health." And both articles raise this issue in the context of current national discussions about runaway health care costs.

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Questions about the definition of normal, about who gets to define "normal," and about the medicalization of the body are at the core of disability studies scholarship. So it would seem that in the debate about health care funding and cost control, some of this scholarship needs to be injected. Policy wonks and legislators should be aware of this body of work. In the context of these two articles we could point them to the work of those who have addressed these issues for more than a decade. For example, Robert Aronowitz demonstrated in 1998 that disease definitions are influenced by the vested interests of physicians, researchers, and policy makers in the biomedical enterprise and are not immutable biological entities, disconnected from their cultural context (Making Sense of Illness: Science, Society, and Disease. Cambridge: Cambridge University Press, 1998, pp 11-14).

Such vested interests abound - as we are all already knew, but are certainly witnessing - in the current debate.

SCI in magazines this week

Garber writes an article entitled Life Without Legs in Newsweek, where he talks about adapting to life as a paraplegic. Sports Illustrated features a story on Kevin Everett, discussing the superb medical treatment afforded to the NFL star in an article entitled The Road Back.

I'm going to Disneyland because I need a flu shot

I was having my coffee while on the phone with a friend of mine. She's disabled, has no access to transportation services right now and was telling me she has no way to get a flu shot. As we were talking, my eye caught a headline on the NY Times saying that flu shots are being given out in airports.

"Take a vacation," I quipped.

Ironic, isn't it, that conveniences like this happen but it's practically impossible to get a flu shot to someone who is having trouble getting out? Sure, some medical folks will bring care to homebound (or semi-homebound) people, but some won't. I told her that I'd see if I could find someone to come to her house.

Of course I'm not saying that everyone falls through the cracks. But my friend seems to.

"I know," I said. "Let's send you to Disneyland!"

"Yeah," she agreed. "I could do a commercial for them - I'm going to DIsneyland because I just need a flu shot!"

[visual description: An image of the Disney character Goofy is shown. Goofy, black dog with floppy ears, a wears a lime colored top hat, is smiling with two front teeth showing.]

Followup to post below: Health care access issues

Here's an article at NPR which also discusses health care access issues...

Women's Access to Health Care - "The Uphill Push"

Kara Sheridan, one of the bloggers who recently hosted the Disability Carnival, has written a great article on the health care system and how women with disabilities fare in it. It's published in the November 2007 issue of New Mobility and I've provided a link , but you need a subscription to the magazine to read the entire article. You can get a subscription at their site if you'd like.

I highly recommend this article - Kara did interviews with women of all ages and occupations - including a female medical student named Bliss Temple who uses a wheelchair and "designed a curriculum on health and disability for medical professionals".

One of the women interviewed, Stacy Milbern, talks about how accessible exam tables, which she's heard about, seem to be a myth. Another woman discusses the assumption that she needs therapy because she uses a wheelchair. And she speaks of professionals whom she's consulted who tell her that their office doesn't need to be accessible because they don't have a specialty in treating people with disabilities.

Getting into the waiting room or examining room is still an issue for those of us in wheelchairs, not to mention dealing with the attitude of some staff members who expect us to bring someone along, Kara points out. And these barriers, attitudinal and those involving access, keep us from getting adequate health care.

Clearly a great deal of advocacy is still needed in this area.

Catholic charities' statement on SCHIP veto

"It is disappointing that there were not enough House members willing to
stand up for children and vote to override this ill-conceived veto of a
bill that would have helped so many children without health insurance.
Because of President Bush's veto and the 156 House members who voted to
uphold it, thousands of poor children living in every state will not
receive health insurance coverage that they would have received under
this legislation. Their actions put the health of many of our nation's
children at risk.
"The veto may have blocked this bill, but it cannot stop our commitment
to the most vulnerable in our society. Catholic Charities USA calls on
Congress and the White House to work together to find agreement on a
bill that provides this critically needed health coverage to more poor
children."
-Rev. Larry Snyder, President Catholic Charities USA

"Life in Medicare's Waiting Period"

In this USA Today article, the impact of the two year wait for Medicare benefits for people with disabilities is discussed. It reads in part:

"Each year, tens of thousands of Americans like McCutchan find themselves disabled and unable to work. After going through the process to get Social Security disability income, most are shocked to discover that they have to wait two more years to be eligible for Medicare, the federal health program for elderly and disabled people.
...There are no precise estimates of how many people, insured or uninsured, are in the waiting period, but the number probably ranged from 1.4 million to 1.5 million in 2003, says a report by researcher Gerald Riley published in the journal Inquiry in fall 2006. Of those, a National Institute on Aging Health and Retirement Study in 2001 estimated that 27% to 39% had been uninsured at some point during their waiting period.
Often, that's because they are too ill to qualify for private insurance, their Social Security income puts them over the limit for Medicaid coverage and they can't afford to continue insurance through their former employers."

Click above to read the rest.

"The DIfficult Patient"

via NY Times

This article discusses the need for more emotional care from physicians for those with chronic conditions - and illustrates this with a scenario of an isolated patient who is in chronic pain. Makes for interesting reading and there are some issues here affecting those of us with disabilities who have experienced the medical phenomenon of being abandoned when care won't "fix" us and the social isolation that can occur.