Wednesday, May 21, 2008

On the Subject of Health Care

It is believed that 2 million women are living with fistula in the world today. Sarah Omega Kidangasi was one of them. She was a 19-year-old Kenyan schoolgirl when she became pregnant as the result of rape. Like many fistula victims, she lived in a small village, far away from a hospital with the equipment and personnel to deal with a complicated pregnancy. "Due to the distance, I was late to reaching the health facility," said Sarah, now 31. "I'd been laboring for 18 hours. It was unfortunate, in that village, they were lacking some of the equipment. I was transferred to another facility, a mission hospital, and I gave birth to a stillborn baby boy who weighed 4.8 kilograms [10.6 pounds]. Three days later, I was leaking urine, and I realized that I had developed fistula. I stayed in the hospital for two months, and I was discharged in the same condition."

Sarah's ordeal began in earnest when she returned to her village, where the leaking made her an outcast. This triple punishment of losing a child, living with a hole between her vagina and bladder and being isolated from her community is common, according to Kate Ramsey, global coordinator of the U.N.'s campaign to end fistula, which is now active in 45 countries. "In some countries, there's a misperception that women did something wrong, that she was adulterous," said Ramsey.

Pretty Lady brings this up, not merely to encourage a bit of consciousness and fund-raising on the part of her friends, but to illustrate a general point, which she has been noticing in recent Healthcare Discussions. To wit: that it is a general human tendency to blame others for their problems--nominally in order to disclaim responsibility for helping them, but subconsciously to avoid facing the fear that one day, It Could Be Them.

Now, when we look at a barbaric society in a far-away place, and note honored traditions such as raping young village girls, butchering them in substandard medical facilities, and ostracizing them for the results, we may clearly and comfortably declare, 'The horror!'

But she is here to tell you that we do this in our OWN society. In our OWN culture, we turn away from the ill, the disabled, the odiferous and the unfortunate, and look for reasons to blame them for their conditions. We cannot look suffering in the face, accept it, and accept the sufferer, even though this acceptance is far less difficult and painful than enduring the suffering itself.

We do this because most of us fail to understand one salient point: We don't have to fix it. Accepting the humanity and essential blamelessness of a suffering person does not entail anything other than that. It does not mean we must swoop in, pay their medical bills, build them a house, and wait on them hand and foot; it does not mean that if they continue to suffer, we have failed.

It may be that if we get into the habit of this acceptance, we may see more clearly how certain pervasive systems contribute to the problem, and how, with diligence, clarity and efficiency, they can be made to serve a better purpose. But this comes after the fact. First, we must bear witness.


k said...

Ah, thank you.

I know it makes a lot of people uncomfortable to be around the disabled or maimed or ugly. Proportionally, there are far more of us here in Florida; when I travel elsewhere I'm startled at how much more uncomfortable people are around me. They're scared. They're just not accustomed to seeing people like me.

I also realize part of that discomfort is because they don't want to inadvertently hurt my feelings.

But see, that's also part of the *I have to fix it* issue. They don't need to fix my disability, or my feelings either. I need to come to terms with my limitations on my own. Not their job, not their business. I'm just another person. Chill.

I'm not going to jump down your throat if you happen to notice that I'm lame and look messed up, okay? I am. I already noticed I am! Stop believing all this hoopla about how we're always upset about people not being PC. That's an insult to my character.

Nope. Don't have to fix it. Just show the same respect you would for anyone else.

There's the rub.

Some of my worst moments in dealing with my disabilities in public is when people try to help me without asking first.

They don't ask if they can help; and they don't ask how they can help. They just start grabbing my things, or me.

It doesn't seem to occur to many of these people that if a total stranger started grabbing THEIR things out of their grocery cart or car or whatever without asking first, they would probably feel a very serious boundary had been violated.

It has. This is truly disrespectful, offensive, insulting, and violating.

And dangerous.

I try very hard to react politely, but the problem is, I'm trying to forestall a bad situation by acting fast in response to their actions.

If I say --no, stop! please don't touch!-- they usually keep on going, with a patronizing *kind* smile, saying,
--Oh it's okay, I don't mind!-- assuming I'm only trying to Act Independent and don't really mean it when I say,

Or some get really angry at me. A few weeks ago a lady at Sam's got so pissed off, she said, --Okay, shit, BE that way then!-- and stalked off in a fast huff. I tried calling after her, --Lady! Lady!-- to tell her she might have just contaminated herself with my MRSA but she refused to listen to me, kept on running away. So...tough, then.

In either case, they've subjected me to the humiliating sequela of explaining to them that they now must wash their hands or use hand sanitizer to avoid my MRSA, and that I now have to take extra steps to clean off my canes, etc. that they love to grab without my permission. Their hands on my canes where my hands go? An excellent way for an immunocompromised person to pick up another germ.

All this because they think they're supposed to fix me.

It's hard, these days, for me to grant them the assumption that they meant to be kind.

Because I'm a realist.

It's pretty insulting, when you get right down to it. They're assuming I'm incompetent to handle my business, or that they somehow know, better than me, how best to help me should I need it.

WTF? They're total strangers, they don't have the faintest idea what's wrong with me. How dare they assume I'm so stupid that a totally ignorant stranger Knows Best.

They often seem more interested in scoring brownie points with God, or impressing others around us, than truly helping me. If I tell them --Stop!-- they sometimes react as if I'm stealing something from them. Stealing their chance to show off how Compassionate and Helpful they are.

Luckily, those aren't the only kinds of people out there who think about helping Those Less Fortunate.

There are others. The ones who say, --Is there anything I can help you with?-- That's exactly what I say to others that might need help. I ASK.

--Can I get the door for you?
--Would you like a hand with that?

And some - precious people these - who just beam a big smile at me, letting me know they see me taking care of myself perfectly well, and that they like my style. They grin at me pulling down Diet Sprite from the top shelf with my cane. Or zipping around the slow pedestrians on my fast scooter.

We have a great time, those folks and me.

Anonymous said...

Interesting perspective. Often I think it is best to simply focus on being decent to the people we know and to some extent encounter. The idea of having a huge emotional stake in the unknown seems a bit off... what causes one to draw the boundaries they do... people should have health insurance... ok... should we give American health care to people in Africa? If not, why? Because it isn't practical? Reason has to enter into the arena somewhere.