Monday, November 30, 2009

The Burned Women: The Deliberate Manufacture of Disability

There are almost 700 million people in the world who have some form of disability. Disability comes in many forms and with a host of causes. Some causes are genetic; some are a result of disease or accident.

That should be enough.

But it isn’t, because in many parts of the world disability is actively and deliberately created.

Recently, a 2008 New York Times story about attacks on Pakistani women has resurfaced in several other contexts (warning: graphic images of disfigured women).

Some women are attacked because they have had the temerity to divorce their husbands (warning, graphic images of disfigured women); girls are attacked because they transgressed male-dominated notions that they should not get educated. Others are assaulted for no reason at all except that they are female.

As I reread the story, I wondered why we are so silent about the hundreds of thousands of women who are horribly disfigured by their husbands or other males with a cultural weapon of choice: acid.

Yes, acid.

The question of course, is why acid? Why is it almost always flung in women’s faces?

Three reasons, at least.

One, in many cultures, men matter way more than women, and the male sense of entitlement, including the entitlement to punish women, is reinforced by the rest of the society. Men are rarely held accountable for these horrific actions and generally they feel justified in committing these atrocities.

Two, disfiguring women’s faces is particularly cruel because in many cultures, people with disabilities are shunned, especially those who have very visible “defects.” What could be more vicious than deliberately creating visible defects like grotesquely maimed faces destroyed by acid? Missing ears. Gaping holes where noses or eyes used to be. Mottled skin literally melted into contorted masks of horror.

Three, in these same societies, women so destroyed are not only shunned because of their disfigurement, but their disabilities mean they will likely not be able to work to feed themselves and their families.

Their lives are shattered. They are deliberately manufactured outcasts.

Some are speaking out in some small way.

Many more of us need to do the same.

Tuesday, November 24, 2009

If You’re Not Conscious, You’re Dead

Over the last few days the media have been marveling at the story of Belgian Rom Houben. In 1983, at age 20, Rom was severely injured in a car accident. He was diagnosed as being in a persistent non-responsive state (derogatorily often referred to as a persistent vegetative state).

Doctors using the standard diagnostic protocols reconfirmed Rom’s diagnosis several times over the years. Medical opinion was that he was severely brain damaged and permanently unconscious.

Doctors urged that his nutrition and hydration be removed so that he could die.

Thankfully, Rom’s mom refused.

For 23 years.

Then, enter Dr. Steven Laureys, who used state-of-the art diagnostic technology (unavailable until very recently) to examine Rom’s brain function.

Surprise, surprise.

Rom’s brain function was almost normal.

Bigger surprise: Rom was conscious.

He had been conscious for every one of those for those 23 long years, but was physically completely unable to move to tell anyone (he can’t even cry).

Using a fairly low-tech communication board and the tiniest movement of one finger, he’s now connected to his loved ones and the world.

Much of the media, and many bioethicists, are falling over themselves to spin this as the rarest of events.

Nope – there are hundreds of similar cases reported and validated worldwide.

Here’s the chilling part (after you get over trying to imagine what it’s like to be able to hear everything going on around you for 23 years but can’t let anyone know):

Bioethics is well on the way to redefining what death is. If some get their way, Rom would have most decidedly been pronounced ”dead” after his initial diagnosis years ago because others would have decided that (a) Rom had no quality of life and (b) because keeping people like Rom alive is futile, his organs could have been harvested for transplantation.

Making lemonade out of lemons, so to speak.

Imagine the unspeakable horror of being conscious and being starved and dehydrated to death, or euthanized for your organs.

No doubt in my mind that it’s already happened – repeatedly.

I’m also left with an even more heartrending question:

What might have been if Terri's husband had allowed Dr. Laureys to examine Terri Schiavo?

Friday, November 20, 2009

First They Came for the Mammograms….

There’s been a great deal of consternation over the last few days about the US Preventive Services Task Force recommending new guidelines for breast cancer screening and evaluation. Essentially, the task force recommends that routine screening begin at age 50 and is probably statistically useless after 75 or so. They further suggested that breast self-examination is so unreliable that women shouldn’t bother.

The history of when to begin screening women for breast cancer has a long history, as noted by ABC News. The guidelines have shifted over the years depending on what the latest studies showed.

It’s also important to understand that conflicting findings are very common in all forms of research and often leave the public confused or increasingly unwilling to believe in the accuracy of any research findings at all.

The task force’s report, however, concerns me for two other reasons.

First, the recommendations are based on statistical significance. All that means is that across all women, the most likely age for getting breast cancer is around 50 or older. Also, across all women, screening after 75 is not recommended because, statistically, they are near the end of their lives anyway.

See the shift? Breast cancer intervention based on probability, not individual medical needs.

Second, the recommendations will inevitably lead insurance companies to adopt the guidelines, which are obviously in their favor, because they can justify not paying for mammograms for women younger than 50 or older than 75. And if insurance companies know anything at all, it’s about probability and statistics.

Which brings us to rationing. The US Senate will debate its healthcare monstrosity tomorrow. Aside from all the other spending-into-oblivion by the current administration, the money to be spent in this bill will inevitably result in needed medical care far, far outstripping the resources to pay for it.

Decisions will have to be made. Some will get breast cancer screening, others will not. Guess what this will mean for your 76 year-old mother?

But the Obama administration didn’t wait for the prestigious semi-independent US Preventive Service Task Force. They have already set up an official government mechanism for using research to justify rationing: The Federal Coordinating Council for Comparative Effectiveness Research Membership.

A whole new bureaucracy to tell us what care we may or may not get by telling us that the “research” has made it so.

The government giveth, the government taketh away.