No Room At the Inn - washington Post story

[Guest guest]

I received this link from a disability related listserv I

belong to – it discusses issues that overlap with this group. Is this

true – do people with cognitive disabilities get denied transplants

because of their disability? I am finding this possibility to be very upsetting

– I would like to hear other perspectives on this since I do not have

personal experience with the transplant process.

LINDA

(Mom of Suzanne,

17; IBD 1/04; PSC 3/04)

http://www.washingtonpost.com/wp-dyn/content/article/2006/12/24/AR2006122400495.html

No Room At the Inn

By Shriver

Monday, December 25, 2006; Page A29

I believe in the principle of last-first: The last thing you

think will be valuable is likely to be the first and most important. This

Christmas, the lesson came to me in a particularly powerful story: the scandal

of Misty Cargill.

Driving home from Christmas shopping, I couldn't believe

what I heard on NPR. Misty Cargill is a woman with a mild intellectual

disability living in a group home in Oklahoma.

She and her boyfriend go to movies regularly and play in a weekly bowling

league with friends. She works full time at a nearby factory. Her life is

normal in almost every respect except one: Misty Cargill needs a kidney

transplant.

I'm no expert on the gut-wrenching ethics of transplant

decisions, nor am I a doctor. But when I heard that Cargill was told that she

was not a candidate for transplant because of her lack of mental competence, I

was outraged. The University of Oklahoma Medical Center decision makers claimed

that she was unable to give informed consent and turned her away.

They did this despite her own physician saying that she is

perfectly competent. The hospital then suggested she get a medical guardian,

but state officials refused to play the role, because they rightfully

determined that she was already fully competent. Most recently, the hospital

has offered to conduct its own assessment of her competence, and that's due

next month.

I suppose we shouldn't be surprised. In one survey quoted by

reporter ph Shapiro, 60 percent of transplant centers reported that they'd

have serious concerns about giving a kidney to someone with mild to moderate

intellectual disability apparently based on fears that these patients can't handle

the complex post-transplant care. The facts are exactly the opposite: People

with intellectual disabilities who have been lucky enough to get a transplant

do as well if not better than non-disabled people, probably because of their

fidelity to instructions and their network of caregivers and supporters.

Lurking below the surface is the more likely reason for

denial: Someone determines that people with intellectual disabilities are

inferior, human beings of lesser value, the last priority. They're put last in

line because they're thought not to matter quite as much as other people. For

Misty Cargill, like another vulnerable person who is being celebrated today all

over the world, there is no bed available. And for Cargill, being turned away

may well cost her life.

But the transplant physicians' attitude is common. According

to a Special Olympics Gallup survey in 2003, a strikingly similar number of

Americans, 62 percent, don't even want a child with intellectual disabilities

in their child's school. In studies of health care providers, Special Olympics

has found rampant negligence in the care of people with intellectual

disabilities. Some doctors even report that they don't want people with

intellectual disabilities sitting in their waiting rooms. One confided that

when care is given, it's usually " quick and dirty. "

All of which brings us to the real question that Christmas

invites: Who matters? A child in a malaria-infested zone? A transplant surgeon?

Misty Cargill?

During this season when we're confronted with the world's

injustices, we're challenged to muster the willpower to make a difference for

those who suffer from inequalities.

But what about when the problem is not an absence of

willpower but the presence of won't power? What about when we are the

innkeepers -- confronted by too little space and finding ourselves uttering the

terrifying words to those who we decide matter less: " There is no room for

you. " What about when we ourselves construct the edifice on which the

shocking and outrageous devaluing of human dignity rests?

We search for a way out. The Americans With Disabilities Act

forbids such discrimination by public entities such as the hospital that turned

Misty down, does it not? The recently adopted United Nations Convention on the

Rights of Persons with Disabilities forbids such discrimination, does it not?

Medical ethics would disallow such behavior, would it not? Political leaders

committed to protecting human life will act, will they not?

Maybe. But on Christmas, we might remember that no matter

how many restrictions and rules we create, the enigma of humanity remains our

inability to follow the mystery of love all the way to its awe-filled

conclusion: Every human life matters. There are no exceptions. There is no

hierarchy. The presence of the divine can be seen in the tiniest and most

vulnerable just as it can be seen in the strong and powerful.

But it can be seen especially among those who are demeaned,

reduced to a stable, having no room at the inn.

The most celebrated character in literature with a

disability, Tiny Tim, famously proclaimed, " God bless you, one and

all. " He was an agent of change -- the cause of poor Scrooge's

transformation from misery to joy.

Perhaps Misty Cargill is today's protagonist of change

inviting us to a deep and terrifying view of the world we have created. She is

the embodiment of the last-first principle: She may be last on the transplant

list, but she may be first in her power to invite a rethinking.

I pray that she will inspire us to feel differently about

human life, both hers and our own.

The writer is chairman of the Special Olympics.

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[Guest guest]

,

I'm glad you posted this. I've never seen a mentally challenged

individual in ANY of the three places where I listed for transplant.

I've had tons of appointments. I never even considered that there

may be a reason that they're not there.

I can say that managing your health after tx can be (but isn't

always) a full-time job. But if you've already got a support system

in place, then that shouldn't be too tough. I think that if the

organ shortage weren't a reality, then doctors wouldn't get into

splitting hairs about how much help someone did or didn't need. I

think that they'd be a lot more open to all of us. You have to go in

there fighting, downright demanding an organ as a mentally competant

person (okay, in a nice way - but you do have to be assertive). I

remember feeling like if there was just one chink in my armour,

they'd deny me listing at a couple of the centers...Such a sad

reality that listing comes down to how well you make your case, who

you have fighting for/with you, and what kind of insurance you have

available.

That's one thing that the article didn't specify - how was she going

to pay for this transplant? That's probably the bigger issue than

her mental status...I wonder if she failed the " wallet biopsy. "

Just my thoughts,

Deb in VA